Our Morgellons Diary

(scroll down for the ‘latest’ news)

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: 

 

1.  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.   

 

2.  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.  

 

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060704

 

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). 

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060904 

 

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. 

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061404

 

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. 

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062504

 

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…

 

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062804

 

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 tuned..! 

 

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062904

 

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..! 

 

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070104

 

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…. 

 

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070204

 

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. 

 

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070504 

 

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’..!) 

 

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070904 

 

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. 

 

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071204

 

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.  

 

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071404

 

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…) 

 

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072704

 

(brief update)

 

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). 

 

 

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073104

 

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. 

 

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080504 

 

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..! 

 

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080604

 

                             ~ ~ ~ ~ ~ ~ ~   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..!” 

 

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081604

 

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.  

 

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082104

 

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…! 

 

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082704

 

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. 

 

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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). 

 

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Got Cindy’s lab work done and faxed to Ginger’s office. 

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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’. 

 

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111804   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…! 

 

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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….. 

 

Cindy sums it up thusly: 

 

            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…!!)

 

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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…. 

 

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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..! 

 

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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. 

 

 

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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… 

 

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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.  

 

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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…! 

 

 

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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).