Part 2 of First Appointment at the Fibro and Fatigue Center
Here's my complete receipt from the FFC. Click on the individual page to see it full size.
Page 1 of the receipt shows tests I was given and their costs, and my diagnoses.
Page 2 details the "Intraveneous Infusion." I'm going to ask more about this IV drip at my next appointment. I think it might have helped me to feel better but I was totally wiped out for the rest of the day of the infusion. The majority of the cost of the drip is for the administration of the infusion. Huh. Must have been to cover the private room they set Mom and I up in - she got her own recliner. She liked that. She read for awhile then took a nap. I sat in my recliner for two hours trying to hold my arm in the right position for the drip to keep on drippin'. I'm supposed to be having these infusions weekly, but it's not possible since I live so far away. I will ask if a local doctor's office could administer this IF I decide that it's really helping. And next time I will have them set it up on my right arm in spite of the fact that I'm right handed. The neck/shoulder problems I have on my left side as a result of cervical degenerative disk disease and bulging cervical disks were severely aggravated by the whole process.
Page 3 shows all the supplements I was given and their prices. ( The complete description of each is included in the Patient Customized Instructions, which follows the receipt.)
Page 4 shows the "Energy Injection" (I have no idea if this helped or not - I think I'm supposed to be having one of these each week also...) and the grand total for the first appointment. You can finance it interest free for up to a year through Care Credit. Yes, it is VERY expensive. The appointment was $390 in and of itself, and they make you pay for it when it's scheduled. In my case that was a month before the actual appointment. More about these costs in future posts. For now I'm just laying it out there.
The following are the "Patient Customized Instructions" that they gave me at the FFC. Pages 1-3 contain more details on the supplements I was given.
Pages 3-4 contain more details on the IV and Energy Injection.
Pages 4-5 contain instructions for an (anti-) Yeast Diet which seems quite impossible to me right now. WHAT ELSE IS THERE TO EAT??? Woman cannot exist on vegetables alone.
Pages 5-7 contain descriptions of the diagnoses of CFIDS and FM.
Page 7 also has a description of Herxheimer. The doctor didn't talk to me about this at all. He did give me a prescription for Nystatin, solely on the basis of my answers to the Candida Questionnaire included in my original 25-page application, that I haven't had filled yet. Nystatin is an anti-fungal, which is a cause of the "believed to be" Herxheimer reaction. I haven't filled the prescription yet because I've been treated with anti-fungals before, with no perceived results. I'm not sure I want to go there, especially given that my current treatment philosophy is based on using evidence-based medicine. There is no evidence that this medicine does what it's supposed to do, or even that over abundance of candida causes the problems it's said to cause. For that matter, there's not even any evidence yet that I have an overabundance of candida. Where's the proof? Included in my blood work is a Candida IgG IgM IgA test. Here's an overview of the test. I'll see what these test results show, and ask the doc what they mean. And I'll also ask where I can find some scientific documentation of the whole schmear. I've looked and searched and can't find anything. I would think that 20+ years after the introduction of the concept of the Yeast Connection, that by now we would have some scientific documentation available of it's existence and treatment. This is the best that I could come up with: A randomized, double-blind trial of nystatin therapy for the candidiasis hypersensitivity syndrome. And these were the Conclusions of this study:
Also on page 7-8 is a description of the Fibromyalgia and Fatigue Patient Handbook that I was given. More on this later.
Here's a list of the handouts I was given at my first appointment:
It's no wonder I was overhwhelmed, eh?
My next appointment is on Tuesday 11/4. Election Day. I'll get my test results then.
Page 1 of the receipt shows tests I was given and their costs, and my diagnoses.
Page 2 details the "Intraveneous Infusion." I'm going to ask more about this IV drip at my next appointment. I think it might have helped me to feel better but I was totally wiped out for the rest of the day of the infusion. The majority of the cost of the drip is for the administration of the infusion. Huh. Must have been to cover the private room they set Mom and I up in - she got her own recliner. She liked that. She read for awhile then took a nap. I sat in my recliner for two hours trying to hold my arm in the right position for the drip to keep on drippin'. I'm supposed to be having these infusions weekly, but it's not possible since I live so far away. I will ask if a local doctor's office could administer this IF I decide that it's really helping. And next time I will have them set it up on my right arm in spite of the fact that I'm right handed. The neck/shoulder problems I have on my left side as a result of cervical degenerative disk disease and bulging cervical disks were severely aggravated by the whole process.
Page 3 shows all the supplements I was given and their prices. ( The complete description of each is included in the Patient Customized Instructions, which follows the receipt.)
Page 4 shows the "Energy Injection" (I have no idea if this helped or not - I think I'm supposed to be having one of these each week also...) and the grand total for the first appointment. You can finance it interest free for up to a year through Care Credit. Yes, it is VERY expensive. The appointment was $390 in and of itself, and they make you pay for it when it's scheduled. In my case that was a month before the actual appointment. More about these costs in future posts. For now I'm just laying it out there.
The following are the "Patient Customized Instructions" that they gave me at the FFC. Pages 1-3 contain more details on the supplements I was given.
Pages 3-4 contain more details on the IV and Energy Injection.
Pages 4-5 contain instructions for an (anti-) Yeast Diet which seems quite impossible to me right now. WHAT ELSE IS THERE TO EAT??? Woman cannot exist on vegetables alone.
Pages 5-7 contain descriptions of the diagnoses of CFIDS and FM.
Page 7 also has a description of Herxheimer. The doctor didn't talk to me about this at all. He did give me a prescription for Nystatin, solely on the basis of my answers to the Candida Questionnaire included in my original 25-page application, that I haven't had filled yet. Nystatin is an anti-fungal, which is a cause of the "believed to be" Herxheimer reaction. I haven't filled the prescription yet because I've been treated with anti-fungals before, with no perceived results. I'm not sure I want to go there, especially given that my current treatment philosophy is based on using evidence-based medicine. There is no evidence that this medicine does what it's supposed to do, or even that over abundance of candida causes the problems it's said to cause. For that matter, there's not even any evidence yet that I have an overabundance of candida. Where's the proof? Included in my blood work is a Candida IgG IgM IgA test. Here's an overview of the test. I'll see what these test results show, and ask the doc what they mean. And I'll also ask where I can find some scientific documentation of the whole schmear. I've looked and searched and can't find anything. I would think that 20+ years after the introduction of the concept of the Yeast Connection, that by now we would have some scientific documentation available of it's existence and treatment. This is the best that I could come up with: A randomized, double-blind trial of nystatin therapy for the candidiasis hypersensitivity syndrome. And these were the Conclusions of this study:
"In women with presumed candidiasis hypersensitivity syndrome, nystatin does not reduce systemic or psychological symptoms significantly more than placebo. Consequently, the empirical recommendation of long-term nystatin therapy for such women appears to be unwarranted."And last but not least on cancida/yeast (for now), my ol' buddy The QuackWatch M.D., Dr. Stephen Barrett, doesn't think much of the whole Yeast Connection concept either: Dubious "Yeast Allergies".
Also on page 7-8 is a description of the Fibromyalgia and Fatigue Patient Handbook that I was given. More on this later.
Here's a list of the handouts I was given at my first appointment:
3-Month Yeast Elimination Diet (AGAIN)Dr. Cuddapah also gave me these two handouts (19 pages) on Hormone Replacement Therapy (HRT) and instructed me to read and know their contents by my next appointment:
Standard Blood Tests Miss the Majority of Hypothyroid Patients
Jarisch-Herxheimer Reactions - Many Patients Ask: "Why do I feel worse after starting treatment for my infection?"
list of Pain Options
list of Sleep Options
list of Energy Options
Hormones and Their Actions
Hypercoagualable State and the Relationship in FM, CFIDS and Unrelenting Fatigue Patients
FDA Approved "HRT" is Risky, by Jonathan WrightNo other explanation was offered as to why I was being given these handouts, and I was apparently too overwhelmed at the time to question WHY.
Natural (Bio-Identical) vs. Synthetic HRT
It's no wonder I was overhwhelmed, eh?
My next appointment is on Tuesday 11/4. Election Day. I'll get my test results then.
Regarding the supplements, you can get Corvalen (same exact thing) from various online sources for $30 cheaper. You can also get a really good probiotic for about $20 from Whole Foods. I have major issues with vomiting and I couldn't digest the coating on the Super Probiotics and that's when I was informed that I could use Jarrows from Whole Foods just as long as it had certain things in it. That saves something. I can send you an unopened bottle of rest & restore, if you want. I seem to have reached my limit with those, although it helped a lot at first.
ReplyDeleteAre you on any thyroid meds? If they weren't super specific in the instructions, make sure you don't take the end fatigue until a couple of hours after the thyroid meds b/c the iron will make the thyroid meds not absorb properly.
One word of advise - as disgusting as the citrus end fatigue may be, the berry is the most vile tasting substance on the earth. Yes, the entire earth. And since I paid that much for it, i forced it down every day. I would take it around ten at work. Every day, my assistant came in to ask why i was moaning and cursing. Then she would see the sludge and chuckle and leave. Cruel.
As for the Nystatin and anti-fungal. It helped me considerably in combination with the initial meds. As for the diet that they outline - my dr said it was far more strict than it needs to be. He said I could have brown rice and whole grains (oatmeal was my big cereal) and most fruit. biggies to avoid were white flour, sugar and alcohol. It helped me a lot. I've since "fallen off the wagon" and I am about to go onto another anti-candida diet phase to see if that helps with my energy levels throughout the day (i get spikes but then i burn out at the end of the work day).
Herxheimer reaction - at first, the only major herxing that I had was a monster cold sore. That's it. I definitely don't think it was from the Nystatin. It was all of the other stuff they had me on which was causing the virus die off.
The really bad herxheimer reaction happens when they put you on an anti-viral med, like valcyte or valtrex. and the key to avoiding it is to take it with Burbur. They should sell it at your clinic. Burbur is the anti-herx. I swear by it. I forgot to take it a couple of times and I was miserable. So there was a definite difference. I'm about to start another round of valtrex, so I'll be a burbur diehard fan again.
I didn't get much from the initial IVs. I didn't really like the back and muscle IV. Didn't feel like the memory IV did much. The energy injection was fine, but it was mostly b12 (which you might be able to get a local dr to give you). Between the end fatigue and the corvalen, i didn't notice a difference when i stopped getting either of those.
I HATED the viral IVs though. I had to stop them. Besides the fact that I can't really get needles to cooperate with my body, the super viral IVs wiped me out.
Sorry for the long rambling comments, but I remember what it was like to try and navigate this maze earlier this year.
Thanks so much for the long rambling comment, Danielle! I'm just now getting back into the swing of my daily life after my second appointment at the FFC. Yes, lots more to absorb and more meds to take. Thyroid, yes, plus a half dose of Metformin for Diabetes as Dr. C. says I show signs of pre-Diebetes. Ugh. I'll write more when I'm able.
ReplyDeleteWow. I'm overwhelmed just reading through all this. I can't imagine being the patient and getting all those IV drugs and supplements, etc.
ReplyDeleteI can't wait to read more from your 2nd appointment and hear whether any of this appears to be helping yet. Did the doc give you any idea on how long it takes the "typical" patient to notice a difference? (Typical! Right! Like any of us with these kinds of symptoms is typical! :)
So what happened at the FFC? Have they helped you, would you say it was worth all the expense? I keep finding accounts of people who go from a couple of years ago but nothing recent and nothing conclusive.
ReplyDeleteCharlotte,
ReplyDeleteI've had to slow down on blogging due to additional diagnoses; they're coming at me fast and I'm busy trying to absorb the meaning and decide on courses of action. Blog posts on that coming up, too. I do still plan to continue/finish the series on the FFC, when I can. I will say that I've changed from my FFC doc to a local doctor, John Abell, M.D. of Albany, GA. He is willing and able to continue what we started at the FFC in my three appointments there. At a much reduced rate!!!