Diary of Cindy Casey, RN
In June of 2004 people from all over the world discovered & began to follow the adventures of “Cindy”. This was an almost, day to day drama of Cindy Casey-Holman (written by her husband Charles “Chas” Holman) in dealing with Morgellons Disease. The time is from mid- 2004 to mid-2005; just about 1 year in her life.
“We” (morgies) lived on the edge of our seats waiting to read the next entry. The real life drama she faced going up against every professional (doctors) that she could get appointments with, was better than any TV Soap Opera or mega-blockbuster that Hollywood could produce. Morgellons patients could relate in the “first-person” sense to what was happening. Charles was there every step of the way to support his wife, Cindy, while she was dealing with all these “supposed” medical experts. Charles did not have Morgellons. He loved, respected, and stood up for & with his wife, regardless.
Sadly, Charles Holman was not able to complete the diary. On September 6, 2007, “Chas” was taken from this world. Cindy’s Diary was just the beginning of a mission that continues to this day as the Charles E. Holman Morgellons Disease Foundation.
I would encourage anyone connected with Morgellons— patients, family, friends, and professionals– to take the time to read this legacy. You will be glad you did.
Gwen “Sunny” Simmons, RN
NOTE: You may need to hit your ‘refresh’ button if you’ve been here before
This is a portion of what goes on in the life of someone with this disease and I will try to document as much of the reality as I can.
It’s been going on for quite awhile now, so I’ll have to back up and give you a bit of the history here…
I met Cindy in the fall of 2001 the day after she was released from the hospital following a total hip replacement. The hip is great, but about a year ago Cindy began developing some rashes in various places on her body and complained of the areas “itching like crazy”. Talked her into a visit to a Dermatologist who immediately pronounced his astute observation: Diagnoses..? Atopic Dermatitis. Sheer genius.
Countless salves, ointments, steroidal creams and anti-depressants later ( Oh, yeah, anti-depressants.. Cindy thinks they prescribe these in hopes that you’ll be so knocked-out you won’t even want to call the doctor..! ) anyway, she just wasn’t getting any better. Oh there were ‘other’ diagnoses and some very interesting ‘prescriptions’ as well. My personal favorite was: “Instead of drinking that one glass of wine in the evening, try some Chamomile tea.”
The one recurring question I kept hearing doctors ask Cindy was: “Are you under a lot of stress?” She was always quick to respond that her life “has never been better..!” Oh, did I mention that we fell in love and were recently married..? I think we’ve tried everything from Antihistamines and Acupuncture to Zen and Zoloft, all with no significant improvement.
Then, one week after our wedding ceremony, a friend called to tell us to watch a news item on KTVU (in San Francisco) that very evening. Sure enough, we saw and heard people who were experiencing the same symptoms and getting the identical “run around” by their Dermatologists. We also learned of the Morgellons Research Foundation and quickly accessed their website: http://www.morgellons.org
That’s when we found out that we were going to be treated like ‘fruitcakes’ due to the medical establishment’s view on this ‘new’ disease. We bought a ten dollar microscope and started looking at the fibrous ‘things’ on Cindy’s skin. I’ll stop right here to let you know a few things about us:
- Cindy has been a Registered Nurse for 15 years and an LPN for 10 years prior. She works in the Intensive Care Unit of a prominent San Francisco Hospital. She is well respected in her field, which consists mainly of transplant patients with heart surgery patients as her specialty. She also doubles as Charge Nurse for her unit when necessary. She has always received excellent employee evaluations and is ranked in the top ten percent of the nursing staff at her hospital. Even the most ‘god-complexed’ of the doctors in her hospital listen to this woman.
- I am a sixteen year veteran Field Operations Manager for an international provider of video products and a semi-retired musician. Things in my life are fairly well structured, i.e., when my equipment at a customer’s site is malfunctioning, it requires testing, analysis, repair and resolution. When playing music, I don’t play country licks on an Etta James song and I don’t play jazz licks on a George Jones song. The stuff of my life is structured that way.
In other words, neither one of us is anywhere near “delusional”.
Okay (back to the microscope) we began examining some of the lesions we see crop up and just like most of the victims of this insidious disease, there are these fiber–like strands in every place the itching is present.
I will caution you about this little marvel, the microscope, use of it can be addictive..! Cindy will sometimes get caught up with looking at lesions or scabs and before she realizes it hours have gone by. My advice (if this happens to you) is get out and take a walk or a drive in the country or, better yet, just carry on with your life as ‘normally’ as possible. None of us can afford to let this disease take over our existence.
Anyway, I have seen with my own eyes at 50x to 100x, the ‘critters’ and for anyone to tell me otherwise only magnifies the stupidity of that individual. Having said that, and because I agree with Cindy (and believe that I too can see these microscopic ‘bugs’) I am afflicted with something referred to as: ‘Folie a deux’, or ‘the madness of two’. So, this is now MY new disease, as I have seen the little culprits and I admit that they are real and present.
While we were on our honeymoon, in the South Caribbean, Cindy ran out of her antibiotics and the itching came back with a vengeance. After a few days of ‘toughing it out’, she decided to go see the ship’s doctor. Dr. Deryek N. Gowland, is probably the most honest doctor I have encountered in a very long time. He actually ‘looked’ at the lesions on Cindy’s arms and legs, and was seemingly shocked at the fact that this had been on-going for over a year. As he put it: “It’s unacceptable for… this… this… condition to not have been diagnosed and treated before now.” Realizing my ‘opportunity’ I immediately asked, “Do you have a 50 power scope on board?” The look on his face was as if he’d just been kicked in the chest. “Uh… no… no. We don’t have those types of lab-like facilities here.” I thought to myself, “Of course not, Jeez, for a minute there I thought you were a ‘Man of Science’…! What was I thinking?” To his credit, he did ‘observe’ a few of the lesions with his Otoscope. That’s the closest any doctor I’ve seen has come to actually looking at this situation.
He was very helpful in getting Cindy the antibiotics… and medication for the yeast infection that had ensued with the use of the antibiotics. I echoed Cindy’s request to him for the above treatment and explained that this part of it was “ruining my honeymoon..!” He looked across his desk at Cindy and replied, “Selfish sort, isn’t he..?”
Before we left his company, he told us, almost apologetically: “Look. What we, as General Practioners, do is prescribe one of four things; antihistamines, antibiotics, steroids or referrals.” ……like I said, he was honest.
Dr. Dennis Tuffanelli
Cindy has seen many doctors over the years in an effort to find out what these ‘skin flare-ups’ were, but most of them want to point to ‘stress’ or ‘anxiety’. The current dermatologist she has been seeing, for close to two years, is Dennis Tuffanelli, who I have decided has the best gig in the entire medical profession. From what I can tell all he has to do is walk in to the exam room, look at your skin, say something like, “hmmmm”, write a prescription and in five minutes, he’s gone…!
…………I should have gone to Med School like mom wanted.
Went to visit Dennis Tuffanelli and the only thing we walked out of his office with was a 4”x5” piece of paper with his “prescription” in scrawled handwriting, which read:
“Suggest referral Dr. John Koo UCSF”
I was ecstatic..! Finally, a referral to a University Medical Center. I asked Dr. Tuffanelli, “Does he deal with strange things like this?” “Oh, yeah,” Tuffenelli answered and then rolled his eyes as he went on, “VERY STRANGE THINGS!”
Cindy very politely reminded me on the way down the elevator of Dr. Koo’s stance on the Morgellons issue. I now refer to him as “Dr. Koo-koo” as that’s the way most of his patients are diagnosed. For those of you who don’t know, Dr. Koo is not only a dermatologist but also a psychiatrist. …just what the Morgellons patient needs, don’t you think..?
I’ll talk to those who are supporting someone with this disease here: There WILL be tears… lots and lots of tears. Best advice I can give here is to help them dry as quickly as possible. For me, it’s usually humor that seems to do the trick. But mostly it’s just being there and being supportive. I believe that with Cindy, most of the tears emanate from the absolute disbelief that her own peers will not even take the time to actually look at this. Imagine, if you can, the feeling of betrayal and abandonment when people in your own profession believe your condition to be psychosomatic.
And by the way, that ‘brainfog’ thing..? Oh, yeah… it’s real. I have watched this highly intelligent person take minutes considering something that used to take her seconds. This is the thing that will take most of one’s patience… I’ve found it’s best just to wait and let her sort through the ‘fog’ (though sometimes I do suggest things to help expedite the process).
Whooppee..! We got a call back from Virginia Savely’s office (in Austin, Texas) this morning and they are sending a ‘kit’ whereby we can get a blood sample to the IGeneX lab (here in the bay area) which will then be sent back to Savely’s office in Austin. We had been referred to Savely by the Morgellons Research Foundation.
Getting the blood for the Lyme disease testing was interesting, thought we had a butterfly here, but didn’t. Luckily, Cindy does know a few nurses and she wound up with ‘the best stick in West’ to draw it for her and the sample is gone to IGeneX labs for the testing that Savely’s office wants. Should be two weeks before it gets to them, in the interim we faxed the five page history of Cindy’s medical past to Savely’s office… can’t wait for an appointment date.
Diane (from Virginia Savely’s office in Austin) called this morning to tell us that the blood work had come in from the IGeneX lab. The results of the Lyme Disease test was positive. We were both ecstatic..! Imagine that; here we were actually glad that Cindy has Lyme Disease. We started to laugh at ourselves, for being happy about an otherwise serious diagnosis, but at least now, we know (makes us wonder what kind of “Lyme” test Dr. Tuffanelli had done at his lab..??)
We set the appointment with Saveley’s office for July 9th, so stay tuned…
Diane called back and confirmed the July 9th appt. Got an email from the producer of the “Mystery Disease” segment that ran on KTVU here in the Bay Area – the one that led us to the Morgellons Foundation and ultimately, the truth. Cindy has agreed to do an interview so…. stay tune
Got a great dissertation on Lyme Disease testing from Mary at the Morgellons Research Foundation… Very interesting read… (link on the previous page). Cindy tested negative for the past five years and only recently got the real testing done… which turned out positive. Best $180.00 we ever spent..
We’re beginning to get some emails – people who have seen the site and are mainly happy to know that there are other folk out here who are in this situation. I’m sometimes a bit slow on answering my email (I get a healthy dose doing my real job) but I will get around to answering you. And Cindy and I thank all of you for your prayers and support..! Hang in there guys and gals, we will be triumphant….
09:45 appointment with dr. Tuffanelli (where appropriate, I no longer capitalize the ‘doctor’ thing) . . . boy, oh, boy… what a joy this visit was..! We needed four things; first, Cindy’s hospital wanted a new set of forms filled out to keep her on Medical Leave of Absence, mainly so she won’t lose her job..! (this had to be in by July 5th), second, copies of her entire file, including all lab work, third, antibiotics and something to help her sleep, fourth, we wanted the State Disability Claim form filled out – so that, hopefully, Cindy can have some money coming in (this was the lowest on our priority list).
Let’s be clear on all of this; Tuffanelli is the one who wanted Cindy to stop working in the ICU due to the ‘open lesions’ on her skin. He’s also the one who has referred her to dr. Koo at UCSF (which is one reason we needed her file – of course the other is for Virginia Saveley visit on July 9th , he..he..he).
Anyway, we had all the documents ‘ready to go’ with only his input on some Yes/No questions and two signatures… Cindy elected not to don a gown… hell, he’s never actually looked at her skin on any prior visit, except from a distance, so why bother now… Okay, so, the ‘dr.’ comes in and we begin explaining the need for the documents and his immediate response is, “Oh, I couldn’t do that now…
I have a waiting room full of patients..!” And I’m thinking to myself, ‘what do you think Cindy is, you moron..!’, but I held my tongue. I did show him the letter from Human Resources stating that we had only until July 5th to turn these papers in, if not Cindy would be fired.
I further stated that with the 5th , being a holiday for some, we were hoping to get the forms in by today. “Well,” says the ‘dr.’, “the 5th is Tuesday…”. I didn’t even start to correct him, I’m just standing there thinking, ‘this is our medical profession.. may God help us all..!’ I had myself in position to block his exit – and I was determined to get my ‘four things’ or we weren’t leaving – me, Cindy or the ‘dr.’.!
He grabbed the form and with his hand, clamped the thing to his clipboard. “Well this is ‘No’, and this too…! And, well, this is ‘yet to be determined’…”, blah, blah, blah… and in about 30 seconds he’d finished the forms and signed all the documents..! I was watching ‘sheer genius’ at work here.
Then he broke out the script pad and wrote her up for enough meds to get us to Austin…
I checked my cell phone for the time.. He was outa there in his usual five minutes….!
Which doesn’t matter… we got our four things..! and I’d venture to say that’s the last time my shadow will darken that man’s doorway. Some of his notes from Cindy’s file are absolute “Morgellons Gems”, it’s obvious that all along he was gearing for a ‘neuro-dermatitis’ diagnosis. What a putz.
Updates will be a little ‘sketchy’ for the next couple of weeks. We leave for Austin, Texas tomorrow and I’m not sure if I will have Web access on the road.. I’ll post all that happens as soon as I can – may have to wait until we get to the ranch in East Texas (that’ll be after the Austin visit)..
By the way, I’ve put up Mary’s letter to the California Department of Health Services and the ridiculous responses from Stan Husted, Supervising Public Health Biologist (gotta say – with public health officials like him.. yeah, ‘God help us’..!)
We made it to Austin and just got back to our hotel from the appointment. Virginia Savely, NP-C, is just WONDERFUL..! She and Diane (her assisting nurse) actually used the “M” word twice each in the first fifteen minutes we were there. VALIDATION..!
I couldn’t believe my ears..! Health Care Professionals actually saying, “Oh, yeah..! we’ve seen that.. and much worse..!”
All in all, it was a great visit..! (lasted about an hour and a half) Ginger prescribed some serious anti-biotic therapy – 1 gram of Rocephin® injected intramuscularly every three days (maybe I should get my nurse’s license as it looks like I’ll be administering) – this will change to 1 gram every two days, in about a month.
She tells us that her Morgellons patients are responding very well to this type of therapy and we’re actually glad that we can deliver it with a syringe as opposed to having a PICC line installed. Soooo… so far, so good..! Cindy is feeling so much better after hearing a couple of her peers talk openly about this disease…
I’ve been very worried about Cindy having to take all of these antibiotics, but some of the documentation we received states that: ‘the very real consequences of untreated chronic Lyme infection, far out way the potential consequences of long term antibiotic therapy.’
Needless to say, I feel a little better now…
Looks like we’ll hang out in Texas for a while, as they want some more tests done, and we’ll be glad to give them whatever they want.
We’re just happy to have found someone in the medical profession who is interested in this situation and wants to help.
We spent the weekend with our friends, Lee and Ava, in Ft. Bend County (near Houston) and had a wonderful visit. They are now completely aware of our situation with this disease and very supportive.. as well as incensed by the lack of attention the Morgellons issue is getting from the medical profession, health officials, etc. Ava is also a Registered Nurse and has a strong background in Infectious Disease, so she is very interested in what’s going on with Cindy. She helped us round up the necessary paraphernalia for Cindy’s injections and gave me some great advice for giving the intramuscular shots that Cindy will be needing every three days for the next eight months.
I gave Cindy her second dose of Rocephin® and boy was I nervous..! It all looks so simple but when it comes to sticking a needle in your wife’s behind, well… I almost froze. Cindy said the shot (this was my first time) was almost as good as the shot Diane gave her at the clinic in Austin. BTW – the shots really help her with the itching and even seem to help with the ‘fog’ and tiredness.
We’re headed to Austin for another visit to Ginger’s office. Although Ginger won’t be in on Tuesday, Diane has agreed to get everything together for us so we can get the CD-57, LFT and CBC tests done.
Diane was great (on the 12th) and we got all the lab stuff submitted and went over a bunch of questions we had. Ginger had left our scripts with Diane so we headed south to see an aunt of mine down in Wimberley, Texas. Our visit was short and very sweet but we had to get on the road to the ranch. Stopped in Austin and picked up most of the meds and finally arrived here about 3:00am. So nice to be back in the pines and watch Cindy get a good night’s sleep for once. It’s very quiet out here and almost no traffic as our place is pretty much in the middle of nowhere.
Plans do get sketchy from here though, as we have a lot of work to do on the place but need to be back in the Bay Area by July 27th for our appointment with Dr. Vera Price, a dermatologist who works at UCSF with the great dr. John Koo… I wouldn’t miss this meeting for all the tea in China. In fact I intend to tape record the entire session. My plan is to transcribe the dialogue and post it for anyone who wants to read how these people operate. (I’ll hang on to the tape….. for ….. whatever…)
Anyway, we’re wanting to get to Oklahoma to see my Mom (who loves Cindy like a daughter) but our schedule and hers may not be compatible. Lots of house and land related stuff I have to get done here, so we might just be here in Texas for a week or so…
Overall, Cindy is doing better on the Rocephin® with a few ‘flare ups’ of itching attacks a few times each day. The Gentamycin™ that Ginger prescribed, is also helping Cindy. When she feels the itching start, she applies the ointment directly to the ‘itchy’ area and (usually) within minutes it subsides. Still, it’s ‘bugging’ her….
(extremely long delay…)
Cindy is doing much better – fatigue is minimal, energy and stamina are way up..! and we’re having a hard time finding any fibers or critters – the ones left are short and straight, unlike the knotted, gnarly ‘bow-ties’ and ‘wrap-arounds’ that we have been used to seeing with the microscope. Oh and the mood swings and brain fog are really improving..!
Had a wonderful time at the cabin in East Texas… major downtime… I’m getting better at giving Cindy her shot. Got to visit with our good friends, Chris and Rob and their son Josh and his friend “Mr. D”… cool folks..!
Didn’t make it to Oklahoma but we came back to California via my sister’s place in Colorado… just beautiful..! Utah…. Nevada… ‘nuf said.. made it back to Sausalito last night and then today…
The Infamous U.C.S.F. Dermatology Department Visit
We had been referred to dr. John Koo (by the great Tuffanelli) but prior to that we had made an appointment with Vera Price. As they are in the same office we were denied the Koo appointment in lieu of the scheduled meeting with Price. We never saw Price… instead we were interviewed by an intern named Liao… woops… did I say ‘intern’..? I meant to say Resident (they don’t use ‘intern’ anymore.. it scares too many patients). He was quite thorough in his questions and (believe it or not..!) he donned a pair of latex gloves and actually LOOKED at the lesions on Cindy’s legs, arms and buttocks. I’m thinking, ‘this might be good’… Liao then left and returned with Dr. Janellen Smith. Cindy told her the entire story. We explained the Lyme connection and the treatment we have begun. About all she had to say was, “I’m very skeptical.” I then asked her, “Skeptical about the treatment..?” She replied, “Skeptical about the treatment and the diagnosis.!”
(I’m glad I don’t carry a gun….)
I told her that I was initially skeptical but after seeing the incredible results, I can only be ‘skeptical’ now about a skin disorder being diagnosed as ‘atopic dermatitis’ and treated for a year, with absolutely no results..!! One of dr. Smith’s observations was that the antibiotic therapy was having an anti-inflammatory effect on her and that is the reason the itching has lessened. (at this point, I’m beginning to wonder exactly where this woman got her degree). Also, when told of the fibers coming from the lesions, she explained how all wounds create fibers as part of the healing process. I reminded her that Cindy is an ICU nurse and Cindy politely explained that she has seen a few wounds having been a nurse for over 20 years, and that the ‘fibers’ we were speaking of were NOT the ‘healing’ variety…
I’m getting so tired of doctors who don’t have a clue about developments in their own field of expertise… isn’t that part of the gig..?? to keep up with what is happening in the world of medicine..? (sorry, Mom, but I’m beginning to hope I never have that “Ph.D.” thing appear after my name). We did inform the good doctor, that the Nurse Practitioner, Ginger Savely, was just named Texas Nurse Practitioner of the year (okay… we we’re one day premature on this, but we new she’d win..!) anyway, that didn’t impress ‘doctor’ God-ess… she did say she’d be ‘interested in how Cindy is doing after the therapy’. (After all… she does work at a “teaching” hospital… which is a good thing… they should be “teaching”… because they’re damn sure not “LEARNING” anything..!!!)
The intern… er… I mean ‘resident’, Liao, did ask for Cindy to return in about eight months, “just to see how you have progressed.” Oh, yeah… we WILL be back . . ! if for no other reason than to rub their noses in it..!!
Bottom line…?? Just like everyone predicted, going to a university medical facility is a major waste of time… and a five dollar co-pay… and the five dollar bridge toll… and the fourteen dollar parking (yeah… well, it’s Frisco.. everything’s high here…)
Cindy is feeling so much better that she’s actually talking about going back to work..! Ginger has told her that her new schedule will have to be less hours and days so instead of the 12 hour shifts, she will most likely shoot for 8’s and maybe only 3 days a week. Of course, she’ll also need two weeks off every three months so we can drive back to Texas for our face to face appointments with Ginger (they totally discourage any flying as most patients with this don’t do well in airplanes).
Okay..!! I stand corrected..! My dear Aunt Mimi (a Ph.D. herself) has indeed pointed out the error in my previous post. I must now apologize to all those who might have taken offense at my earlier ‘soap boxing’. It seems that I was ignorant of the ways in which ‘doctors’ are addressed….
As she so eloquently puts it: “…When you refer to ‘Ph.D.’, as you did in reference to your own education, be advised that Ph.D. is of philosophy, not medical. The “medical practitioners” are MD and really look down on PHD. Rarely will one call us “Dr.”…”
My problem with all of this is: these folks (with the letters at the end of their names) are surely the smartest kids in the class… right..? So why do they act so ignorant..? All we really need here, is for one of them, any of them, to actually take a look at what is going on with these lesions, fibers, etc., that are invading peoples’ skin.
Cindy has been contacted by a Micro Biologist whose daughter has ‘fibers’ coming out of her skin. Luckily, she is in Marin County, so we may hook up and have her take some samples to her lab at Marin General. Her colleagues are very interested in what they have examined from her daughter, so we’re hoping this will be a ‘good thing’. Cindy has fewer and fewer lesions since we have started the Rocephin® therapy, so finding a ‘good sample’ may be a bit difficult but we do still see some from time to time.
BTW – we are going to one shot every other day starting 080604 as Diane (from Ginger Savely’s office) told us that as soon as Cindy can handle a shot every other day – Go For It..!
One Month Review
Cindy’s first IM shot of antibiotics was delivered four (4) weeks ago and here is where we stand:
1. Far and away less itching and lesions
2. Less tired and she’s only getting on average, nine (9) hours of sleep each night
3. Major reduction in tears and mood swings
4. Brain Fog is less and less with each day
5. Energy level is WAY up… she’s actually going back to work in the ICU in a week or so…!!
By the way – we’ve started going to the park (every day that we can) and playing catch…
I believe it’s just the right amount of exercise… we play ‘til Cindy gets tired. She loves it and I’d forgotten how much fun throwing a ball back and forth can be..!
I DO believe this therapy is WORKING…!!!
God bless Ginger Savely and Diane Gay… and (as the song says) “God bless Texas..!”
Quite a bit to update so here goes… we met with the microbiologist, Jenny Haverty, who is a fifteen (15) year veteran of Marin General, on August 12. The purpose of the meeting was for her to get some samples of the fibers from Cindy’s skin.
We got some ‘good’ samples, though I will admit, with the way the therapy has gone, it’s getting harder and harder to find real ‘good’ examples of the involved strands that we have previously seen almost anywhere we looked.
Jenny’s daughter is able to wipe off ‘hairballs’ of the fibers, pretty much, at will – but has no lesions or skin breakouts of any kind. We’re looking for some news in a few weeks, and even though I’m not sure what they’ll find, it’s good to have someone looking at this stuff.
Next new item is: Cindy is going back to work – with some restrictions, tomorrow..! She is looking forward to getting back and seeing all of her old nursing buddies.
We had our con-call with Ginger Savely yesterday and she is so impressed with Cindy’s progress that we are going to introduce the Flagyl® portion of the treatment as soon as we can. Cindy is excited and is really enjoying being back at work. The three days a week and only eight hour shifts is a breeze for her, compared to her former twelve hour / four day a week schedule. All in all, things are really going well
Woops…! Major screw up…! We picked up the Flagyl® and Cindy began taking one 500mg tablet on the days she doesn’t receive her Rocephin® shot. Bad move..! It was a combination of the tablets being 500mg in size and her doing so well, that we decided to go for 500mg dosage as opposed to the recommended 250mg. Well… it weren’t pretty, to put it mildly, and within a day of starting on the Flagyl® she began to itch like crazy again, which scared her – maybe ‘freaked her out’ would be a better description. Anyway, a few thousand tears later we dropped the dosage to 250mg and I think things will get back to ‘normal’.
For those who are unclear on the process, here is what I understand about the structure of this therapy: It starts with the Rocephin®, which seems to kill off the ‘bugs’ – at least there are less of them, itching lessens, lesions begin to dry up, brain fog gets better and energy levels improve.
Then, we introduce the Flagyl®, which attacks the ‘critters’ in their cyst form – it’s kind of like ‘they’ retreat from the bombardment of the antibiotic (Rocephin®) and the introduction of the anti-fungal (Flagyl®) gets ‘em back out into the open – for continued bombardment by the antibiotic.
I can now see why the treatment lasts for eight (8) months and I can also see how millions of people are going to suffer for a long, long time being treated by doctors who refuse to give them a long enough course of antibiotics…
The only ‘good’ thing to come out of this is we wound up with some great new Morgellons examples, which we are photographing with a digital microscopic camera. I’ll post a few of them when I can – look for a new ‘Images’ category on the Morgellons page of this website.
( Wow..! long time no blog…! )
Sorry to any of the avid blog readers… things have just been kinda crazy ‘round here..!
Okay… so where’d I leave off…. Oh yeah, end of August…. So, September was like a roller coaster ride… good days, bad days. Cindy was able to work 3 shifts a week all month long with little problems (while at work) and it has also given her the opportunity to show her lesions and fibers to several of her nurse buddies… (God bless you; Paula, Becky, Tim, Joi, Stephanie, Susan, Poul, Los and all of you who have shown interest as well as support..!) and even a few of the doctors..! (well . . . . a guy can hope, can’t he…?)
Another thing that has become a reality, is Cindy is taking care of people in the ICU that are WAY sicker than she is, and she tells me quite often how lucky she is and how she really doesn’t have a ‘problem’ compared to the guy who just had a heart transplant..!
Another cool thing that happened in September is that Aunt Mimi came to see us and spent a long weekend… it was really special to have her out here. Took her to see an old time jazz band at the “No Name Bar”, in Sausalito and she just loved the entire scene..! Couldn’t have had a better time if we’d paid for it…!
October 1st we left for Texas; spent the first night in beautiful Santa Barbara… I’d have to check the gas receipts to tell you where we went next…. Anyway, we got to our appointment with Ginger in Austin on the fifth. Ginger listened to what Cindy had been going through and immediately told us to STOP the Flagyl® as it might be causing too much discomfort.
Great visit with Ginger and Diane, and we stayed over to do the TV spot for Ginger which aired on the 10:00 PM news; they thought the piece was a bit morbid for the 6:00 PM broadcast. Many in my family watched the piece on the local news (both of my sisters live in Austin) and they were amazed at what they saw.
Went to see my best friend (an old musician buddy) Lee and his wife Ava, who live down near Houston. They took us to see Wayne Toupes – who I now believe is the unknown hero of Zaedeco music. What a band..! We also saw Jason Boland and the Stragglers, great alternative country band. We wound up talking to the steel guitar player for half an hour, which got us Jason’s autograph on his latest CD. All in all it was a spectacular night of music and Cindy and I both had one hell of a good time.
Spent a few days at the ranch and of course had to go for a “porch sit” over at Rob and Chris’s… I am sometimes overwhelmed with the greatness of our friends. They listen and understand… what more could anyone ask for in a friend..? We love you Rob & Chris, Lee & Ava, Mark & Deb, Dino & Jami….! Thank you all for understanding, for helping and for looking out for us.
We went by to see my Mom in Oklahoma on the way back to California and had a wonderful visit. Stayed the night and she even called the pharmacy for us and we were able to get enough syringes for the trip home. Cindy just fell in love with Mom’s one hundred year old house.
Cindy’s been ‘itchin’ ‘n bitchin’ which gets me ‘trippin’ ‘n flippin’ so we got on an emergency con-call with Ginger. Thinking that a co-infection of Lyme, called Babesiosis (a protozoal thing) might be what’s wrong, she prescribed Mepron® as well as Zithromax (another antibiotic).
Got Cindy’s lab work done and faxed to Ginger’s office.
I am going to try my best to describe, arguably, the weirdest day in our medical visiting history….
Ginger’s office (that’s Diane…love you, Girlfriend..!) called to tell me that Cindy’s eosinophil level (on the re-draw labs from Monday) had gone to ‘69’. The norm is ‘0’ to ‘7’. She had spoken with Ginger (who is on vacation… God bless Ginger..!) and Ginger called her old mentor and the man she interned under, the infamous Dr. Raphael Stricker who is well know for his work with Lyme patients and also happens to be a hematologist. Stricker told Ginger that he was willing to see Cindy – today – to ‘see if he could help’. Diane was faxing his office every hour as well as calling the office (and leaving messages), we started calling at 0900 (and emailing) to find out “when” we should head out to the city. No response… so about 1400 we decided to head to the city, after all, we’d left messages, both our cell numbers; at least this way we’d be close to the office when they did finally return our call(s).
Arrived on the 15th floor of 450 Sutter in San Francisco around 1440 and saw a sign on the door which said: “Out to lunch will return by 3:00”. So we were trying to decide what to do when Dr. Stricker himself walks out of the office. Cindy recognized him and explained who we were and his reply was a courteous, yet very cautious, “Yes… yes… we were going to ‘squeeze you in’ today. Just ask David in the office to set it up and I will be back soon.”
We had seen, earlier, two women go to the door and knock and they were immediately let in. Well, we knocked on the locked door and a man answered, looking a bit perturbed. I asked if he was David and he nodded in the affirmative and I quickly outlined who we were and why we were here and he then closed the door… curious, I thought, but the door came open again and he invited us in and waived toward the waiting room. After about four steps inside the office, David turned to us and asked, “Do you realize that this is a “practice” here?” Cindy was quick to answer, “Oh, Yes..! Yes, we do..!” David put his hands on his hips and in a raised voice said, “Well, obviously you DO NOT..!!” He then motioned toward his desk area and exclaimed, “We got the faxes and the phone messages; we would have called you..!” At this point, I’m ready to scrub the mission and I replied, “We could come back tomorrow, if that would be better..” Then David went off on tirade that went something like this, “Well, you’re here so just go in the waiting room and make yourselves comfortable. I’ll have to rearrange Dr. Stricker’s schedule to accommodate you… Of course, NOW he’ll be working late and that will take away from him spending time with his wife and children..!” This strikes a deep chord in me and now, I am definitely ready to LEAVE….! David walked away and I turned to look at Cindy and even as the words “you wanna go” came out of my mouth, I saw the answer streaming down her cheeks. I grabbed her and held her right there in the waiting room and she said, “Let’s get out of here. I don’t need this.”
Oddly, Ginger called as we got to the car and as those of you who know her can imagine, she was devastated when I told her what had transpired… she also knows how I feel; excluding medical procedures which must be done, if it makes my baby cry… we ain’t doin’ it..!
Tomorrow Cindy has an appointment with Dr. Kathleen Grant who is a hematologist at CPMC, the hospital where Cindy works. This could be very good..!! We were able to get a referral from Cindy’s primary care physician to Dr. Grant. When told by her office staff what Cindy’s blood results showed, this woman called us immediately…! Then set the appt. for the following day…!
Ginger called and told us to “Stop the Rocephin® shots, immediately..!” Cindy’s eosinophil levels were “off the charts”. We went and had a re-draw just to rule out a lab error. Sometimes a reaction to the antibiotic can cause an elevation in the eosinophil, but Cindy’s was ‘58’ and normal is below ‘10’.
A very good day… We met with Dr. Kathleen Grant who gave Cindy the most thorough exam and questioning I have seen since this whole thing started. Wonderful lady and very professional. Even took a few minutes to examine the pictures of Cindy’s lesions and excoriations that I showed her on my laptop… but her job is the blood work and though she was ‘interested’ in the fibers and lesions, that’s not her focus. She even indicated that Cindy’s elevated white count might not be related to the rash at all. (That’s okay, Doc… hell, we’re open to anything, at this point…!) Dr. Grant explained that not only would the blood go to the lab, she would also personally view the blood under a microscope. She also recommended that we stop everything, including nutritional supplements for the time being. We went down to her lab for blood draws and seven vials later…..
- Golden Gate Bridge Toll: $ 5.00
- Downtown Parking Garage: $ 10.50
- Insurance Co-Pay for visit: $ 5.00
- Seeing a ‘real’ doctor: priceless….!
Crazy footnote, when we got back home this afternoon, there was a message on the answering machine, from Dr. Stricker’s office. They wanted Cindy to call and confirm an appointment date on the 22nd. Also, they needed to remind her that the initial consult was $500.00 and any follow-up appointments would cost $250.00. They don’t deal with insurance, at all… period. Too bad we have already scheduled that day to re-arrange our sock drawer…. Oh, well…
(do you think they have wine and cheese in the waiting room..? for 500 bucks… you oughta get something extra…!!
Cindy’s going to call in sick… she’s feeling a little better physically but the FFT syndrome has become extremely emergent… (for those of you unaware, that’s Free Flowing Tears syndrome)…
After revisiting our ‘bizarre’ visit to Stricker’s office, Cindy came up with an interesting analogy:
It was like Dorothy and the Scarecrow (Cindy and me) finally getting to the end of the Yellow Brick Road (Golden Gate Bridge) and there we were in Emerald City (San Francisco) where the Great Oz (Dr. Stricker) resides. Trouble was; we couldn’t get past the Wicked Witch of the West (David, aka, Prissy Bitch of the West)…. Hmmm, if we could just get hold of that broomstick he rides to work on…. Maybe, just maybe….
This happens to us all the time… we get started on talking about something, and in a few days we’ll see something about what we were discussing on TV or in real life. After the above analogy, and searching for something ‘good’ to watch on TV…. We wound up on TNT and watched The Wizard of OZ . . . coincidence…? I don’t know anymore… like I said; this happens to us all the time.
Cindy’s feeling much better today and has decided to go to work this evening… in other words… it’s one of those Good Days..!
Happy Thanksgiving…! No turkey for us today as Cindy is going in to work this evening. She got sick at work last night and I had to go pick her up early, but by the time we got home she was feeling much better. I told her it sounded like that “3:30 virus” my Mom used to accuse us of getting so we didn’t have to go to school – but wanted to go out and play when everybody got home..!
Even with all of this going on – much to be thankful for. Mary Leitao, Ginger Savely (you too, Diane.!), Jenny Haverty, Dr. Grant (thanks for seeing us on such short notice..!) All of the helpful folks on the new Lymebuster.com (you rock, AntHill, Jane D, JJ and especially Patti and Kerri). Of course, all of our collective family members who have come to be so supportive. Also, we have each other, and that’s a very good thing..!
It’s so difficult to explain this disease and how hard it is to deal with when one has it. On the message board last week, someone made the comment that ‘if this were cancer, and you were on chemo, people would readily understand how bad the treatment sometimes make you feel. But most folks seem to think that with Lyme and all it’s co-infections you should be able to take your meds and roll on with life’ – it just ain’t that way.
We’re still off of all medication and supplements…. And Cindy’s still feeling okay, the lesions all over her buttocks, back, legs and arms have improved – slightly.… I hope the next labs show up halfway normal, but I keep wondering… then what..? Go back to the original treatment..? How do we weed out ‘what’ caused the weirdness in the white blood cell count…?
Note to God: Thank you, Father God, for all the blessings you have bestowed upon us…! By the way – I don’t like this disease that my wife has. Not bitchin’, Lord, we’ll deal with whatever you hand us. Just want to go on record here that I don’t like this disease.
Eosinophils are down, per the last round of labs, to 33 (from 58 remember ‘normal’ 0-7) and the WBC’s are now at 8, which is ‘normal’ (down from 24.4). So, we’re feeling a little better about things and expect to find everything A-OK on the next visit tomorrow.
We did the trip to L.A. last week and I promise to update as soon as possible, but I will say that the trip was great and the doctors seem to be ready to attack this on a research level as well as a ‘relief’ level… more later as I get all the details. I’m very hopeful though.. Cindy’s feeling much better these days – without the meds (go figure..??). We plan on heading back to Texas for what should have been our last treatment appointment. From there I think we’ll be able to plan out, with Ginger, where we’re headed next… stay tuned…
Got a lab update from the draw yesterday and the eosinophils are down to 23 – still high, but comin’ on down.! We’re trying to figure out what to do next and plan to call Ginger tomorrow. She may not want us to come back down there until the blood work is back in line. We also have the remainder of the labs from the L.A. trip that should be back by tomorrow so we’ll try to contact them also…. this was an extensive bunch of tests and we’re anxious to hear how they came out. Also gearin’ up for the infamous Infectious Disease doctor’s appointment on the 15th with Shelly Gordon, who works at CPMC where Cindy has been a nurse for the past fifteen years. This oughta be interesting… main thrust here, is to have her help us collect samples, biopsies, scrapings, (whatever it takes) per the required guidelines of the CDC, for submission to the CDC in an effort to get this disease documented and FINALLY recognized. We’ll see if she earns the capital “D” (in ‘doctor’) in front of her name. And if she disappoints us… we move on to plan B.
Jenny Haverty, Clinical Microbiologist at Marin General Hospital, has completed her study of the fibers extracted from four Bay Area residents – one of whom was Cindy. You can view the report by clicking on the “new” button on the previous page – the names were changed pending approval of each of the participants (but ‘Candy’ is Cindy in the report). Great report and our hat’s off to Jenny for a wonderful and thorough report. We are so jazzed that we’ll be able to take this scientific report with us to the Infectious Disease doctor, Shelley Gordon, tomorrow. I’m sure I’ll have a lot to say on that visit – so stay tuned…!
Well, well, well…. finally the doctor’s appt with Shelley Gordon. We went this way because:
1. we got a referral
2. she IS an Infectious Disease doctor
3. most importantly, she works for the same hospital that Cindy has worked at for the past 15 years
This has been a plan in the works of my miniscule military mind for quite some time… work this problem form the ‘inside’, e.g., Cindy’s own hospital, using the doctors that she has worked with for all these years… who knows..? might be just what we need to get this damn thing recognized.
Okay – we got there and right off Shelly mentions that some of Cindy’s co-workers have been telling her about Cindy’s condition, etc. I’m thinking, ‘this could be good’… Sat down in Shelley’s office and Cindy started from the top – very articulately outlining what she has been through so far. Six years of ‘on again – off again’ rashes, fatigue, flu-like symptoms, some headaches, Lyme positive, antibiotic therapy, eosinophils, and on and on… Shelley took notes the whole time and seemed quite interested. When Cindy got to the fibers, I proudly presented Jenny Haverty’s report which she put on the side of her desk – Shelley even mentioned that she “saw a report on the news about ‘Morgellons’ awhile back”. WOW – we got a winner..!
Exam room – Cindy disrobed and Shelley looked at the lesions, which now are all over her buttocks, lower legs, forearms, thighs (these are very recent), upper back and (very few) on the scalp. She was appalled that Cindy had been scratching them – well… they ITCH, (bitch)..! Shelley grabbed an Otoscope (why on earth do they even make these things – better question; why do they allow them in a doctor’s hand..?) Cindy explained that she might want to use our pocket microscope, as it is 6 to 10 times more powerful. I’ll give her this – she actually looked at a few of the lesions with our scope and commented that the fibers were most likely from Cindy’s clothing. She then rendered her verdict… er, I mean diagnosis: most likely this is Neuro Dermatitis, basically; self-mutilation. She left and Cindy got dressed and we looked at each other and just smiled…
Sat back down with Shelley at her desk and Cindy explained that we are on a mission here and I explained that I’d just like her help in getting some samples to the CDC in Atlanta for diagnosis. I then handed her a copy of the letter from the Director of the CDC – which states in part that the CDC has not received samples submitted in the proper format to make any decision on Morgellons. I told the doctor, “As I am not a doctor, anything I submit is, obviously, questionable. All I need here is your help in getting the samples submitted via the proper protocol.” Shelley started with a, “well… I, um..” I interrupted her by handing her the CDC’s submission form and instructions sheet. “Well..!” was all she said. (I’ll be very surprised if that ever happens).
Shelley gave Cindy explicit orders not to scratch and Cindy explained that it would take general anesthesia to keep her form scratching something that burns and itches as bad as this condition. Gordon ordered a bunch of labs and gave Cindy a script for Vicodin. Oh well, so far Ms. Gordon has a lower-case “d” in front of her name, as in: dr. Shelley M. Gordon. She will remain this way until she proves her worth at our
‘follow up’ appointment on January 4th. Hopefully, she will read the documentation we left with her and rethink her position on this. If not…. We’re going to see a fellow at Cindy’s hospital with whom Cindy has worked for many years – and if that don’t work…
I will call the CEO of CPMC, Martin Brotman and we will make an appointment with him – give him a chance to help one of his own. KTVU’s producer of the first two TV segments (that aired here in the Bay Area) has agreed to accompany us on that visit (in fact she wanted to go with us today..!) If Brotman won’t let the news crew in his office, I’ll hold a press conference in front of California Pacific Medical Center after I’m done with him.
Any of you who know Brotman – you might want to get the word to him… you can tell him… there’s a new gun in town, he’s a Texan, he’s quick on the draw, he’s mad as hell and he’s comin’ for you, dr. Brotman..!
Yeah, I rant and rave a bit, but I am hopeful that CPMC will rise to the occasion and actually get something done with this disease. They have all the research facilities, all the doctors and the ability to get this done. I started this day in a back and forth email battle with Cindy’s nurse manager. I won’t go into how ridiculous the exchange was (only speaks to incredible ignorance of this disease) but I will give her this; the last thing she told Cindy today was that she is sending the information to the hospital’s Research Department. Great…!! That’s what I’ve been wanting to hear.
People don’t realize how insidious this disease is and how much pain and suffering it delivers to the people who have it. Some emails I receive from sufferers of this explain how, for whatever reason, they can’t leave their home. Prisoners of grotesque lesions, constant scratching, feeling fluish and drained, not able to concentrate on anything, and the inability to deal or function with people. A few (they say) have died from this via suicide or improper treatment… I say there are so many, we’ll never know the number of deaths attributable to this disease. The other thing I just hate hearing is how someone loses everything because of this. Home, kids (yeah, as in their children), spouses, jobs, insurance, family… interesting that if this were cancer or some other ‘known’ disease, most of that kinda crap simply would not be. People ‘understand’ those kind of things, but I find fewer and fewer these days who actually grasp what is going on with this disease.
We are lucky in that Cindy has very good days and some that are not so good. I do my dead level best to keep her on track, spirits up, we’re doin’ the right thing here, yadda-yadda…. But in reality, a ‘not so good’ day is just ‘not so good’ and we deal with it as it comes – and laugh about it when it’s gone. Like I said, we’re lucky. Whatever journey this is we have now embarked upon, we both want some form of fruition. We have drawn that line in the sand and we shall see what the outcome will be.
We had our con-call with Ginger today and looks like we’re gonna try some Doxycycline® – Whooooppppieeee…! No injections…! Anyway, this is the same antibiotic that Cindy’s dentist gives as her as pre-med’s for anything they do since her hip replacement – it’s a legal thing. She has always praised her dentist visits as ‘good days’ and attributes this to the Doxy. Maybe this is the alternative to the Rocephin®. Latest labs have the eosinophils down to 9. Still a bit high but a hell of a lot better than 69. We told Ginger about the visit with the ID doc and all of us had a good laugh about the fact that it turned out exactly as everyone warned us.
It looks like the hospital is gonna be gettin’ some letters from people who know this wife of mine. Lord only knows where this is headed now.
We found some sulphur (finally) in the form of MSM ointment, which Cindy has found a small amount of relief with. Our buddy in Idaho is trying the DSMO treatment – but I think he’s adding sulphur directly to it… with any of this sulphur stuff, there’s a bit of a burn (like sunburn) but the relief is longer lasting than anything else we’ve seen so far. From what I understand, this stuff has been used for skin therapy forever… what a drag to have to experiment with different things to try to get to a point where one can deal with life. All we are after with the MSM is a little relief for Cindy’s itching. I’ve always said that if we can get past the itching, it’s much easier to be ‘normal’, in spite of this disease.
I think I’ll just write a letter to Brotman… call him out… and see what he’s made of.
December 24, 2004
Martin Brotman, MD
2100 Webster Street Suite 423
San Fransico, CA 94115
Charles E. Holman
Subject: Cindy Casey, RN
Dear Dr. Brotman:
I understand that we are now family. On April 24th of this year, I married one of CPMC’s finest nurses. Her name is Cindy G. Casey and she has worked in your MSICU for over fifteen years. One of her recent duties includes a patient with Dr. DeBakey’s latest VAD implanted by Dr. Soon Park. My point here is that this woman is no stranger to challenge. She also loves her job and loves working at CPMC. I know this is true; I’m the one who listens to the stories each night as we drive home from the hospital.
The fact that Cindy always ranks within the top ten percent of hospital staff during annual review coupled with all the friends I’ve met that she works with, I know that she must be an outstanding employee. Perhaps that is why she was on the ‘A’ list when CPMC’s new E-ICU began operation. Which brings me to our current dilemma; Cindy is ill, Dr. Brotman. She has a condition, referred to as Morgellons, only because the medical community has, so far, refused to investigate this disease.
On my web site I will invite you and all medical professionals, to view the agony this woman has gone through. We’ve been the gamut of dermatology (including UCSF) only to be consistently diagnosed with Atopic dermatitis and always, even if not blatantly stated, the ‘lean’ toward some form of ‘neuro-dermatitis’. No one is ‘delusional’ when it comes to this disease. There are many, from coast to coast, who have the same condition. Twelve hundred similar sufferers have made it to the web site of the Morgellons Foundation, and those numbers are just the ones who have had the tenacity to seek out, on their own, whatever information they can find about their condition. Most have just about given up all hope on the medical community. Oddly enough, most of those are nurses. As only 27 physicians are actively treating this disease nationwide, we have had to travel to Los Angeles and as far away as Texas for treatment. None of which has provided us a cure. Of course, all of these visits are out of pocket as we are operating ‘out of network’ in all cases.
Cindy and I recently had an appointment, at CPMC, with Shelley Gordon. We went to Shelley because we were able to finagle a referral and we’d heard what a fantastic Infectious Disease specialist she was. Gordon’s conclusion was that the etiology of my wife’s condition was not infectious. “This looks exactly like neuro-dermatitis. Self mutilation.” were her exact words. I find it very sad that a ‘fantastic’ ID specialist, with all the tools she has at her disposal, would reach for an “easy way out”. That borders on malpractice, Dr. Brotman.
Let me be perfectly clear on this, Dr. Brotman, I am on a mission here, and I will not stop until we get the answers to this medical mystery. I will invite you to join us on this search and hopefully, in the process, heal one of your own.
Charles E. Holman
Husband of C. G. Casey, RN
Mailed the above. Guess we’ll see… The MSM is off the program – too much burn for the little girl. We have been using the UV light on areas of lesions but only for about ten minutes on each area per day. Cindy says it does seem to help. Then again maybe it’s the Doxycycline®. Anyway, she’s feeling better so we must be doing something right.
The letter should be there by now…. Ain’t heard nothin’. Cindy has had two really fantastic days. We went to the grocery store and she’s been cookin’ up a storm these days. She even got to doin’ the laundry. We’re keeping up the UV treatments and the sulphur soap seems to be another thing that’s helping.
Still no word from the CEO…. However, today was our follow-up with the fantastic ID specialist, Shelley Gordon. Now I’m not exactly sure if someone jumped up and down on Shelley’s desk or if she read the volume of literature I left on her desk during our last visit… or maybe some of the nurses in the ICU cornered her in the elevator (they all know about “the diagnosis” now – more on that later) but, anyway…. Shelley came out to meet us with a “Happy New Year” and rushed us straight into the exam room. I’m thinking, ‘what..? no pre-game show in the office..?’ – she wasn’t gonna give us a chance. “Let’s look at your lesions” and she even brought her own jeweler’s loupe (maybe 8X at best). She immediately wanted to know Cindy’s ‘dermatology doctor’ experience… “been to seven – all with the same outcome”. Shelley said she wanted a punch biopsy done of one of the lesions and asked if we’d see the CPMC dermatologist. She told us, “I’m not completely on board with this “Morgellons” thing, but I want to see what the biopsy will show.” I was kinda blown away that she actually used the “M” word but before she left the exam room I told her that we’d go back to a dermatologist, but I don’t want to hear anything about ‘neuro-dermatitis or self-mutilation’. She made the call in front of us and told the dermatologist’s office that she didn’t want the doctor to make any ‘judgments’ and for him to just ‘do the punch biopsy’.
We’ve been to so many damn doctors that I can’t even remember all of their names. Most of those appointments took anywhere from two weeks to two months (from the time of the call) to actually get in to see the doctor. Well…. before close of business, we had an appointment with this dermatologist for tomorrow morning..! Interesting, eh..? Anyway, Cindy calls it a “turf out” – which basically means a ‘referral’ when the doctor doesn’t want to see you anymore – doesn’t matter… it’s so obvious to me that Brotman is involved that I can’t wait for the next segment. I love watching a ‘professional’ squirm when the boss asks, “What the hell’s goin’ on down there…?? Get it FIXED, damn it!” And I don’t care that Brotman won’t show his face, or even answer my letter…. It’s obvious that he’s “on the job”, so to speak. Keep it up, Marty… ‘cause the minute the interest in Cindy’s DISEASE OF UNKNOWN ETIOLOGY begins to fade… I’ll be all over your ass, my friend… all over you ass.
I hope I’m not boring you guys……
09:45 we’re in to see Dr. Lawrence S. Kaminsky, M.D., the dermatologist we were referred to yesterday by Shelley Gordon. It seemed he was ‘edgy’ at first but Cindy began explaining that she had Morgellons (she had actually written ‘Morgellons’ on the admission form as her ‘reason for visit’) and he actually admitted that he had heard of Morgellons. I asked “where he’d heard of this” and he responded that he’d seen the piece on KTVU about the disease and had actually seen a Morgellons sufferer, “Of course, I saw that patient prior to seeing the TV piece…. Naturally, I assumed it was psychological,” he told us, and looked at me and stated, “We don’t know everything…. And we should remain open to a new disease.”
The next few minutes were consumed with me training the doctor on the use of a handheld Radio Shack 60X microscope. After Cindy identified an ‘itchy spot’ the doctor looked and decided that all he saw was a ‘hair’ at which point he took his tweezers and scraped the ever lovin’ shit out of my wife’s wound, I assume in an effort to ‘dislodge’ the mean old ‘hair’. After a bit of review on ‘what’ we are looking for, we observed and found the good doctor a beautiful view of three little Morgies all clustered together in a typical ‘triangulation cross-fire’ mode. I will identify them as follows: one ‘support the troops banner’ type, one ‘curly-que question mark’ and one ‘classic bow-tie’ all in the same field of view…. (and “yes”… those are ‘technical terms’ around this household).
“I can get ALL OF THOSE..!” he stated… and then the “little procedure” started… I almost passed out watching what this guy did to my wife. First the short needle with the Lydocaine which he rammed under the lesion and started to squirt as he rotated that damn needle under her skin..! I watched in horror as the lesion became engorged and actually raised up a good fourth of an inch as I observed it. Cindy was turning pale and asked, “Do you think I’m having a reaction to the Lydocaine?” But all I could see was that she needed to lay down, which she did on her own… then came this syringe with – instead of a needle – a razor sharp cylinder of about the size of 9mm round (or ~ .38 caliber) on the end. I’m thinkin’ “what’s that for?” and about that time he drove the aforementioned device into Cindy’s arm, with a decisive ‘twisting’ motion. A pull on the plunger ‘locked in’ the selection and then…. He pulled this ‘specimen’ up about an inch away from the arm and calmly laid a pair of scissors down near the lesion and cut the entire piece of dermal matter loose from the skin. I almost puked. The blood immediately filled the 9mm hole and started to run down the arm, so he covered that with gauze and asked Cindy to hold it in place. Did I mention that I almost puked..? I’m still picturing that HOLE in my wife and then came the sutures….
I never expected sutures… I thought it was gonna be like a small diameter ‘prick’ or something… I wasn’t ready for the volume of epidermal matter that he chopped from my wife’s arm… whew…!!!
We questioned him on the ability to split the sample and send half of it off for an Electron Microscopy examination. CPMC doesn’t have one….. hmmm… how much did Brotman make in ‘bonuses’ last year…? Anyway, closest one is at UCSF… I offered to drive the specimen to UCSF… then he asked if we had a ‘connection’ at UCSF… no…. we’re just lay-people, we thought the DOCTORS had the damn ‘connections’…!!
Bottom line – this doc went from ‘edgy’ ( I understand… hell he’s had this thing shoved down his throat… and Brotman’s involved… no pressure here..!!) to actually being ‘interested’. I shook his hand on the way out and thanked him for being involved.
Under the bottom line – don’t ever get a ‘punch biopsy’ . . . . did I mention that I almost puked..?
We had been told to call the dermatologist’s office today, for the results of the punch biopsy. Called twice – they finally told us that the doctor had left early… Cindy checked through her CPMC contacts to see if we could get the results faxed to us, but the results are not ‘in the system’ – and neither is the order. I don’t guess it’s going to matter much, they wouldn’t look at what we wanted them to look at, so they’ll most likely find ‘nothing significant’.
Then there’s Marty… it’s been over two weeks now since dr. Brotman received my letter. I wish he had sent some form of reply by now. That’s a shame…..
Sorry for the lack of reporting on the biopsy… Dillon King died on January 5th, and it’s kinda put us in a bit of spin. I’m so sick of this part of this stupid condition. The very day he took his life, I had written in an email, that I did not want to hear of any more suicides. This makes five; that we know of… and that’s five too damn many..!! KTVU is going to run a story on the whole thing, so stay tuned to KTVU – FOX (channel 2 on Bay Area Comcast).
About that biopsy… We called and called trying to find out where the results were. Finally got them faxed to us only to learn that nothing significant was found. The report itself was issued on the 8th, so it sat there for a good four days, with us calling everyday asking about it. Interesting thing is that the report came from UCSF…!! (which explains why Cindy could not access the information through the CPMC lab) UCSF is EXACTLY where dr. Kaminsky told us the sample would have to go for Electron Microscopy… but… we didn’t have a “connection” there. (good grief..!! YOU PUTZ..!!) And if that isn’t bad enough, when Cindy called for “what do we do next, good doctor?” she was told to see Dr. Timothy Berger at UCSF and what we need is to have this examined by Electron Microscopy… (I give up..!!)
Here’s a bit of what was said in the report:
_______________________________________________ Clinical Data: 6 year RX of itchy rash arms…tubers coming out of skin; R/O Morgenelosis
Diagnosis: Crusted Ulceration, flanked by changes of Lichen Simplex Chronicus
Note: The changes herein appear to represent a consequence of excoriation or trauma to the skin. We considered the possibility of an unusual infection, but a PAS-D stain did not reveal fungi, and a Brown-Brenn (Gram) stain did not reveal Gram positive or Gram-negative bacteria. I concede that I am not familiar with the infectious disease mentioned in the submitted clinical history.
I just loved the spelling (and the added ‘–osis’) of Morgellons…
Anyway, we’ve set up the appointment with Dr. Berger at UCSF for January 31st and this time, if he wants a biopsy we will make sure that ALL of the tests that WE want are done… that simple. If not…. we walk…
And we think we’ve got troubles….
The Ballad of Dillon King -C. Holman
An’ the paper did it’s best with the bad news from out West
’bout a comrade who’d been sick and finally died
An’ I can’t describe my rage as I scrolled down that page
An’ found a name I surely recognized
Dillon King was one of those with an illness no one knows
An’ there’s thousands like him all across this land
An’ the doctors say delusion… to add to the confusion
Leaving no one left to lend a healing hand
So, I’m gonna sing.. who killed Dillon King…
No one was around the day he died
All the doctors, all the pain.. they can’t seem to explain
How he took his life with drugs that they prescribed
An’ those that knew him say… he won their hearts some way
An’ in the hearts of many lives his fame
An’ they said he died of Lyme… perhaps we’ll know in time
An’ they’re settin’ up a fund in Dillon’s name
An’ I’m sure he had his fears all of thirty-seven years
He’s left us way to soon ‘n that’s for sure
Elizabeth be Strong Girl, you helped him for so long
An’ I’ve felt the pain that you must now endure
An’ his friends and family could never really see
Any help the doctors gave for his disease
The fibers, they contend, that were coming through his skin
Were just stitches from his past surgeries
So, I’m gonna sing.. who killed Dillon King…
No one was around the day he died
All the doctors, all the pain.. they can’t seem to explain
How he took his life with drugs that they prescribed
An’ those that knew him say… he won their hearts some way
An’ they say he tried to smile through his pain
An’ I’m sure it plagued his mind… but a cure they’ll someday find
An’ then Dillon King will not have died in vain
Sorry for the lack of info, but it’s been a bit busy ‘round here of late. Gotta quote a dear friend of ours who asked the following in an email:
”I have to tell you that I almost puked while reading about Cindy’s procedure by Dr. Kaminsky. Although I had to read it. I’m interested to hear if you’ve heard from the CEO prick or if he’s done what every other overpaid administrator does and let someone else take care of you. I’m also a good KTVU watcher and never seem to catch the clips on tv. I’ll be more diligent.
I’m sorry about Dillon King. So young.”
Well, here’s where we stand:
dr. Brotman, CPMC CEO = No Response
dr. Kaminsky, CPMC Dermatology Dept. = turfed us out to UCSF
dr. Shelley Gordon, CPMC Infectious Disease = worthless
Tomorrow Cindy will be interviewed by the KTVU news team along with Jenny Haverty, Microbiologist… I hope the three doctors above will be watching when it’s aired in early February, as Cindy would like to mention each of them by name. I don’t think they’ll want to talk to me on camera… it would just come out one ‘bleep’ after another…
Yesterday, the local FOX news team came to our house and interviewed Cindy and Jenny Haverty in our living room. Cindy told John Fowler, Health Science Editor for KTVU, of her frustration with the medical establishment and about our ongoing battle to get Morgellons recognized. She was focused, concise and sounded very professional – I’m so proud of my Baby..!
Jenny Haverty, Clinical Microbiologist Scientist, spoke eloquently about the study she had done on the fibers from four Bay Area residents, explaining in detail the characteristics and similarities of the fibers. She then gave an excellent disertation on what they “are not” and expounded on several of the many theories about how and why they are formed. Absolutely brilliant..! You are my hero, Jenny..!
This taping will be added to the large amount of footage that KTVU has accumulated over the past three weeks, which includes coverage of Dillon King’s memorial service as well as interviews with his parents, his girlfriend Elizabeth Strong and Dr. Jennifer Choate who was Dillon’s last doctor.
The piece will air on February 6th during the 10:00 PM news. John Fowler told me that he’s looking at a possible five minute segment for the entire story, which is a huge amount of time in broadcast news.
Yeah…. yesterday was a very good day for the cause,
Here are the latest updated stats from Mary:
Morgellons Research Foundation
01/27/05 Registration Totals
U.S. = 1,249 CA = 337
State Percentile = 26.98%
Did I ever tell you the one about how my wife went to the dermatologist’s office and came home with a cast on her arm..? (stop me if you’ve heard this one)
We did the referral to UCSF and saw Dr. Timothy Berger. After the resident’s bit was over, Berger, the resident and two ‘other doctors’ came in the room. I’m not gonna elaborate on my suspicions here, but one of them was Epstein (that’s Tuffanelli’s partner – also CPMC affiliated) and the other one, Cindy thinks she has seen him around the hospital (CPMC). Did I ever expound on my theory of ‘coincidence’..? An interesting conversation, if you ever wanna have it.
Berger started in on a dissertation that offered no room for ‘return fire’ from either of us. Basically, the ‘disease’ has been around for 100 years (I’m thinkin’ ‘he’s gotta be talkin’ about Ekbom’s or he knows a whole lot more than the rest of the planet). Well, I guess he WAS talkin’ about Ekbom’s… BUT, he is taking the absolute clinical approach to this ‘condition’. This alone is why he has retained his uppercase “D”. He stated that ‘many’ tests would be ordered to rule out anything environmental as well as internal. BTW – that’s the way any suspected D.O.P. case SHOULD be investigated. And if it IS investigated in this manner, any clinician, worth their salt, should be able to find the systemic situation going on with the Morgellons phenomenon. Guess we’ll see if he’s ‘worth his salt’.
One of the initial tests is to cover one area of lesions with a cast, or Unna Boot, which will rule out anything environmental getting into the skin. The left forearm was the area that was selected and a nurse came in and secured the cast. Cindy is to wear this and not get it wet until her next appointment.
Here’s the good part of this visit; he wants to follow up every week with Cindy. Sounds like somehow, somewhere someone is interested in this situation. And, as this is the ‘last stand’ for what I now call “The Brotman Turf Out”, we have to play this out and see what the outcome will be.
So, anyway….. did I ever tell you the one about how my wife went to the dermatologist’s office and came home with a cast on her arm..?
Cindy just called from the hospital (she’s at work tonight) and guess who showed up in her unit..? None other than the infamous Shelley Gordon, she’s the Infectious Disease doc (Dx = “self-mutilation”). Shelley quizzed Cindy on what Kaminsky had done with the biopsy (he’s the CPMC derm she turf’d us out to). Cindy explained that it had revealed nothing. “Did he get the Electron Microscopy done?” asks Shelley. No…! damn it..! He didn’t. Cindy said something like ‘Kaminsky thinks I’m crazy’ and Shelley responds with:
( I hope you’re sittin’ down for this )
“Kaminsky and I neither one think you’re crazy… we both saw the tiny black fibers..!”
Cindy asked Shelley to call Dr. Berger at UCSF (the current derm expert on the case)… and Shelley said that she would. As she left the unit Shelley told Cindy to call her …
Okay…. I know…. I know what you’re all thinkin’…. and I am seriously considering awarding her an uppercase ‘d’ for her ‘title’….
but I have trouble forgettin’ that particular appointment…. hmmmmmm….. is there perhaps a ‘middle case’….?
Dear dr. Timothy Berger,
We came by your office today, Cindy and me, but you weren’t there. Now, as I recall we were gonna “agree to disagree” on your ‘prognosis’ of my wife’s ‘disorder’. Okay, that’s all well and good, but here’s my dilemma, doc. I can’t “agree” or “disagree” with you WHEN YOU”RE NOT PRESENT…! Your reference to a disease which has “been around for over a hundred years” has yielded only Eckbom’s Syndrome as a ‘possible’ candidate for Cindy’s condition, based on my meager means of medical research. I, sir, applaud your scientific approach to this antique ‘condition’ and anxiously await the beginnings of the “huge amounts of tests” that were to be performed on my wife… trouble is, the intern (who DID show up for our appointment) couldn’t seem to explain why it has taken over a week to get that request initiated. Cindy asked her if the info was on her chart, but it seems even that was ‘unavailable’. So, Cindy pressed on for a formal, definitive ‘diagnosis’ from the intern, who stated that, “…the disease is known by different names in different countries.” Cool…. So what are they callin’ it in… let’s say, the USA..? or the UK…? maybe Australia..?
Cindy and I are much dismayed by your arrogance, dr. Berger. And I believe that your little intern would be better suited in another profession, after the events of today… You see, Cindy is an ICU nurse and teeny tiny little first year interns like yours are, generally speaking, EATEN FOR FUN in the ICU, by seasoned nurses like my wife. Sorry if you missed that in your ‘rotation’ sequence, but ask any doc who’s worked the ICU or the ER (what am I thinkin’ – you’re in Dermatology.. you probably don’t even talk to real doctors, do you..?). I do hope the intern will recover… funny, we were on the Golden Gate Bridge (on our way to your office) when Cindy cautioned me about my “tone” with the doctors… I told her I was going to be just a quiet, concerned husband, and promised that I would NOT “go off” on anyone. Turns out, SHE’s the one who put that poor little intern into a tailspin that I don’t think any intern should have to experience. Anyway – I really DO hope she’s gonna be alright.
Well, we certainly look forward to our next appointment with you, on Monday. And this time I hope our visit isn’t just to change an Unna boot… Cindy’s a Registered Nurse and I think between the two of us we can handle doin’ that ourselves… Which reminds me, if it’s not too much trouble, please bring along a fifty dollar bill. That’s what you owe us for today: 5 dollar bridge toll charge, 5 dollar co-pay, 7.50 parking, and 32.50 for lunch (turns out – Cindy was still hungry after eatin’ that intern for lunch).
Cindy’s at work tonight and dr. Gordon dropped by and informed Cindy that she and Kaminsky have EACH received about 20 calls from Morgellons sufferers toady. Imagine if you will, on this day, in the heart of California Pacific Medical Center, two assistants had to answer a call about Morgellons Disease, and then tell the doctor – FORTY times….!! Bad news is, I quess they’re NOT going to see any Mogies.. BUT… Shelley told Cindy “we’re going to concentrate on You for now”. Cindy – Warrior Princess responded with “What about the 400 Morgellons sufferers right here in California.? And how ’bout the the other thousand… where do these people go.? Are you gonna help me get the state and federal health agencies to investigate this disease.?” (you guys pickin’ up on why I married this Gal..?) Shelley said, “We’re going to concentrate on you for now”. I think she was wise to be very ‘docile’ about the events of the day.. after all she was standing in the middle of the ICU – that’s Cindy’s ‘hood’ and her entire ‘posse’ was looking on . . . I think a couple of the nurses would secretly like to hurt dr. Gordon, on Cindy’s behalf…
Mark this day – We are turning a corner here…
Okay, I promise to not expound on my theory of synchronicity, but on the way to pick up Cindy at the hospital tonight, I tuned in to the Coast to Coast program (haven’t listened to this stuff since pre-Y2K) but sure enough, someone calls in (I think from Florida) and asks George if he’s heard about the Morgellons phenomenon. “Fibers comin’ out of these peoples skin. And it’s happening in ‘pockets’ all over the U.S…!”
George Noory admitted that he’d heard of it several times in the last couple of days. He added, “We WILL look into it”.
Bottom line..? Okay… his audience is freakin’ HUGE..!
I’m thinkin’ about sending him an email
Long walk by the sea wall and through some of the little shops in Sausalito… People from all over have called after seeing the video stream of Cindy as well as the Florida pieces. Finally got to see a lot of the faces of the people we’ve heard about or talked with personally. All in all, good media blitz on both ends of the country… Thank you, Mary Leitao of the Morgellons Research Foundation – you done good..!
Abraham Lincoln, Charles Darwin and I were all born on this date. Thanks to everyone who called and reminded me of how old I am. Yesterday we went and picked up the Capsaicin cream… I can’t believe the freakin’ hoops Cindy and I jump through to placate the egos of idiot doctors. This is a Berger script that we haven’t been able to get filled because it was written up wrong on day one…! Fifty bucks (this one’s not covered by insurance) for four ounces of this crap that I could have made at home for about two dollars.
So much to catch up on…. I don’t know where to start. Berger showed up at Cindy’s appointment on Monday and explained quite a bit about getting a ‘new’ disease discovered. He also stated that he had spoken with Shelley for about 30 minutes and “she is in agreement with me”. So…. Shelley (I’m guessing) has changed her mind (again) and now thinks that this is neuro in origin. I find it disgusting enough when anyone knifes you in the back… but to have a professional, a doctor..! suddenly go back on everything she has said, is an outrage. And this is a doctor at Cindy’s own hospital; family, if you will. Cindy was hurt beyond words and I knew it hit home very hard. I hope I don’t have to cross Shelley Gordon’s path anymore, ‘cause I will be glad to let her know, that I think she is bitch… no, not just a bitch… she’s a lying bitch… and I will scour the obituary columns on a daily basis for the remainder of my life, in anticipation of the day I can go to her grave and dance a jig thereon.
I’m not going to elaborate on the entire Berger visit, he’s a smart doc and acted like he might want to get involved in a study, but he has a lot of projects he’s currently tied up with. However, at the ‘end of the day’, Berger still insists that ‘his experience’ has shown ‘most cases of this nature to be neuro’ in origin…. So we’re gonna do the Unna Boot Shuffle for a few weeks to verify that the lesions will heal if left occluded. I did ask him if it might not prove instead, that the ‘agent’ was aerobic, and denial of air or light might retard it’s ‘growth’. He said, “It will prove… something.” (can’t argue with a dermatologist… they’re real smart)
Still it amazes me that a doctor would play bootie games, trying to prove it’s what HE thinks it is; in lieu of actually LOOKING at the fibers and lesions…
I don’t know how many times I’ve said, “Oh, Baby. Please don’t cry”, in the past year. I’m not sure how much more of the BS Cindy (or I) can take.
Media is pickin’ up on this all over the country now… we see Cindy or her lesions or her excoriations from Florida to San Antonio to Reno… I married a TV star…! Calls and emails… too many to count, but thanks to everyone who is still out there supporting us in this crazy struggle.
BTW – a doc out in New Mexico recently stated on Coast to Coast Radio that he has treated one patient with this and the causative agent is a prevalent bacterium named stenotrophomonas maltophilia; and he’s treating it with sulfa drugs, or sulfonamides. Guess we’ll see if we can get a test for that now… jeeeez the challenges never end.
This just in:
Morgellons Research Foundation
02/22/05 Registration Totals
U.S. = 1,552 CA = 414
State Percentile = 26.57%
Don’t know where to start… this is one incredible journey we’re on. I attended the San Francisco Lyme Conference last weekend… incredible..!
Okay, so I took some time off… April 24, 2005 – Cindy and I celebrated our first wedding anniversary. I asked her that morning if she still loved me “after all these year.”
To preface what you’re about to read let me explain that I no longer go to Cindy’s appointments with Berger – he’s just too frustrating for me to deal with but Cindy handles him just like she would any of the prima Donna doctors at her hospital. He did have another biopsy done; which revealed “textile fibers”… (Yeah, Timmy, we hear that a lot with Morgellons sufferers who have had punch biopsies performed). Wonder what kind of medium they use to identify the fibers as ‘textile’..? (“Yeah, Dude… just put a couple of drops of that “Fiber Identification Compound” in there – that oughta show us what we got here..!”)
The very interesting side of what’s happened lately is that on one of Cindy’s visits with Berger (back in April), he looked at her and said he’d been contacted by Popular Mechanics magazine to be interviewed about Morgellons. Now, the thing is, he was looking at Cindy as if she were somehow responsible for the magazine contacting him. Trust me, Cindy has never read even one edition of Popular Mechanics, and I doubt I’ve looked at one since I was a teenager. We have no affiliation with them, nor has the MRF. We were all quite surprised that PM even wanted to do a story about Morgellons.
Well, Popular Mechanics’ recently released June 2005 issue had a report on this disease entitled: Making Their Skin Crawl. Benjamin Chertoff was the author and it reads as middle of the road as any one would expect, having been written by someone trying to report on this in an open and scientific manner. But the part that really stuck out was toward the bottom of the second page:
Another prominent dermatologist, who insisted on anonymity out of concern for his safety, says he has diagnosed 50 or so Morgellons patients with cutaneous dysaesthesia–a neurological disorder that can result in the sensation of scuttling insects. And the spiny things? “in every case I’ve seen it’s a textile fiber, and it’s on the surface of the skin,” he says. He typically puts a cast over the lesions to prevent further irritation and after four weeks removes it. “Guess what?” he says. “The lesions are healed.”
Let me break this down for you:
“Another prominent dermatologist” = Berger
“insisted on anonymity out of concern for his safety” = (probably due to the following line…)
“he has diagnosed 50 or so Morgellons patients” – (ooooohh… don’t believe I would have admitted that, Timmy)
“cutaneous dysaesthesia” = Berger’s DermoBabble term for D.O.P. (they don’t actually say ‘D.O.P.’ anymore)
“sensation of scuttling insects” – I’ve sat and watched Berger force Cindy say that it feels like ‘something crawling’
“in every case I’ve seen it’s a textile fiber” – utilizing the aforementioned ‘Fiber Identification Compound’, no doubt
“and it’s on the surface of the skin” – that’s odd… I’ve never seen him actually look at one fiber – on or in the skin..!
“puts a cast over the lesions” – this is Berger’s infamous Unna Boot Therapy
“after four weeks…. Guess what? The lesions are healed.” – Guess what, Timmy – NOT..!
Cindy had been diligently occluding the lesions (per Berger’s instruction) mainly because she is very concerned about the possibility of contaminating her patients in the ICU – the other fear being what she might contract (from the same patients) with all the open lesions exposed. We had found TegAsorb® to be a much easier solution to the occlusion therapy than the Unna Boot (with that gooey Zinc-Oxide crap) and Berger himself thought the use of them made much more sense as well. Then, shortly after her last visit to Berger’s office (btw – he was a no-show; a ‘new’ derm handled the appointment) she took off the bandages (the itching was ferocious at this point) and what we found shocked us. The lesions were all coming back in a new, smaller form and the entire site was oozing some form of thick pinkish fluid. Fibers were present in every area and it took more than six hours for the oozing to stop and the burning to subside. We took some photographs and I will post them in the Images section as soon as I can free up a little web space.
Timmy has moved himself up on my list…. let’s see; Martin Brotman, Shelley Gordon, Tim Berger – who should be first..? Decisions, decisions…!
Don’t be TOO upset with the idiot doctors who ‘reach’ for some ridiculous diagnosis…
Remember, it’s a short reach to the corners of a narrow mind…!