Discussion in 'Fibromyalgia Main Forum' started by taysmom, Dec 4, 2006.

  1. taysmom

    taysmom New Member

    I'm so confused!!! The FFC that I go to shows me the result's from my blood work and tells me that I have current Epstein-Barr Virus, Candida and that my hormone level's are low, so I go to my primary care physician she look's at the result's from the blood work and tell's me that it just show's and old infection and that it is not current.
    As for the hormone level's.....my gynocologist said they might be a little low, but as long as everything is working at the same time each month, that I should not even think of using bio-identical hormone's.
    I'm literally pulling my hair out at this point!!!!!!
    I thought I finally had some diagnose's and could start to try to maybe feel well again, but it seems that no one agree's on anything!!!
    Thanks for letting me vent!!!!
  2. musikmaker

    musikmaker New Member

    Your experience is why I haven't gone to the FFC. You have to decide which Doctor/Protocol you want to follow. The FFC's are still not accepted by many in the traditional medical community. As you know, you are lucky if your insurance helps you out. I think it will be hard to bring all of your Doctors together.

    What I did to work through my current Protocl was to read everything I could find and try things based on my symptoms. I have struggled with Fibro Fog at the extreme level for quite awhile. I never understand anything I read the first time. Good Luck....this is hard to wade through.
  3. TerryS

    TerryS Member

    My Epstein Barr panel also showed "active, chronic/recurrent". My ENT was the one who ran the test. Some of my docs have acknowledged my EBV; others have said that it shows old infection or that they can't be certain it is active.

    Well, my 16-year-old came down with a full blown case of mono approximately 6 weeks after my test was ran...my eldest daughter also had a milder case...no doubt they got it from me.

    This was in August. I was very, very ill for 8 weeks. I'm a little better now, but I STILL have a sore throat almost daily and feel like I have the flu!!!

    Just goes to show you, doctors only know what they were taught. I gave my PCP the boot after he refused to accept my FM diagnosis from a rheumatologist and/or my CFS diagnosis from an ENT, neurologist, and infectious disease. I see a new PCP now who is very cooperative and does not doubt my illness.

    Good luck to you. You're not alone!

  4. Slayadragon

    Slayadragon New Member

    It's my experience that CFS bodies are so different from other people's in what affects them that what regular doctors think they know about "everyone" doesn't apply. This seems to me _especially_ the case with specialists (e.g. endocrinologists), who think they know everything about their area and are opposed to anything neew.

    My gynecologist is very very smart (he almost became a researcher) and is quite open-minded about the hormones I take (although he doesn't do the prescribing). Probably most gyns are like the other specialists i've run into.

    Anyway, don't let the fact that the regular docs disagree discourage you. Their opinions are irrelevant for the most part because they don't know this disease.

    Now, the FFC's do know a little bit about this disease, but they're still experimenting like mad, from what i can tell. That's not necessarily a bad thing, but from what I've read on the board (there's a lot of people here that seem to be using them) you've got to be carefuly and GO SlOWLY. (They seem to want to go much too fast.

    Hormones seem to be something that the ffC's are good at. And this is actually not experimental medicine at all.....I've been taking bioidentical hormones for 10 years, and have personally used three doctors who would prescribe them for me over the years. you might want to start there, carefully. One hormone at a time., maybe. otherwise, how can you know which ones are helping?

    Candida always is a good thing for cfs patients to work on. i am of the opinion that we should all assume we have at least some candida in our systems that is ready to explode at any moment, and that we therefore should constantly be treating it (at least by not eating sugar and taking probiotics, maybe by taking herbs or--if you're diagnosed with it--Nystatin as well).

    Viruses are a whole other ballgame, because getting rid of them isn't tested. hormones and yeast are easy to get rid of. Hopefully they will get you started.

    I could be wrong of course. but really.....how recently has a "regular" doctor helped you?
  5. taysmom

    taysmom New Member

    Your right....none of my regular doc's has helped me at all. I'm currently taking Diflucan for yeast and do have a prescription filled for Famvir, but I'm waiting on that until I do the yeast thing for a few weeks.
    As for the hormone's, I guess I'm weary, because everything (cycle wise) is working on time right now and if I throw the homrone's into the mix I might become really irregular. My mother swears that my hormone's are a big problem since I started with all my symptoms right after I had my daughter. Do you use hormone cream's or take them orally?
    I've been keeping up on your Famvir reports to see how thing's are going. When I do start, I will have to titer up to the full dosage, because I'm very sensitive when overloaded.
  6. Slayadragon

    Slayadragon New Member

    What kind of hormones do they want you to take? What are their reasons?

    I saw your comment about planning to take Famvir in my other post but was too tired to expand upon it. Did the FFC prescribe it? I've not heard of the prescribing anything other than Valtrex so far.

    I did not know until recently that Dr. Teitelbaum runs these FFC's. He does have Famvir on his list these days, although in an outrageous dose. Did they tell you what dose to take yet?

    What other kinds of stuff did they tell you to take?

    I suppose you've been reading Jolie's posts on Valtrex? And the other comments on the FFC's.?

    I wish I could write more, but I think I need to go and sleep more. I was feeling better when I first woke up.

    I'll check back later and write more....
    [This Message was Edited on 12/05/2006]
  7. taysmom

    taysmom New Member

    The FFC has suggested that I use Estrogen cream and Progesterone cream, because my bloodwork showed that these horomone levels were low.
    They are also the one's that prescribed the Famvir for Epstein-Barr Virus.
    When I first started with the FFC I took a ton of supplement's that they wanted me to take and I was so sick I just wanted to die, so of course I stopped taking all of that and now just take what I think is helping.
    I also take Cortisol for adrenal insufficiency, T4/T3 for thyroid, klonopin for sleep and Effexor.
    I truly believe in the hormone replacement. My gynocologist told me they don't work and that I should just take birth control pills.............is she kiddding!!!!!
    The supplements at the FFC cost a fortune, so I try to limit what I use from there.
    Thanks for all your advice, I learn alot from everyone else's experiences.
  8. munch1958

    munch1958 Member

    If you've never tried B-HRT before it will probably make you feel better. If it improves you energy levels you'll know within a month or less.

    Obviously I'm a believer in B-HRT because I've been using them since 1997. I haven't been able to get them balanced properly yet. FFC did not help me with this even though this is componenet 3 of their protocol.

    In spite of being a patient there since March 06, I still have almost every one of the symptoms listed on their website (see below) under the hormone deficiency section. Their marketing literature says when hormone imbalances are properly treated and balanced ...tremendous results "can" be achieved. It doesn't say that they "will" be acheieved.

    "Hormone Deficiencies -- Sign up for our newsletter to receive news about hormone deficiencies and therapies used in our treatment centers.

    Do you continue to suffer from these conditions: weight gain...low sense of well-being...depression...body aches...restless sleep…dry or rough skin...joint pain...fatigue...cold sensations...low libido...thinning hair...fragile nails...frequent headaches...sore muscles...water retention...constipation...PMS...low motivation...and even low immune system?"

  9. Slayadragon

    Slayadragon New Member

    I'd really like to respond in detail, but I'm too burnt out from the Famvir to do the topic justice. (The good thing for you is that by January I will have been on it for two months and so will be able to share my experiences with you.

    I also don't know enough about you to focus in on your problems.

    I suggest you read a book called "Natural Hormone Balance for Women" by Uzzi Reiss. I haven't looked at all the hormone books that are out recently, but as of a couple of years ago that was by far the best one I'd found. It has great reviews on Amazon too.

    i looked through Suzanne Somers' book at the bookstore and was not very impressed at all, by the way.

    Hopefully if you do that, you'll get a better understanding of the subject matter and we can talk about it in more depth. (I could write a little post right now, obviously, just not give all the info I know on the subject.)

    I'm also going to have my hormones re-tested soon, since it's been a while and things in my body have changed. Perhaps that will give us further info to compare.

    As for yeast---hopefully you're trying to get rid of it with other methods in addition to the Diflucan. (Diflucan often works well, but then the yeast comes back when the drug is discontinued. And a lot of people can't take Diflucan for very long because it's a bit hard on the liver.)

    As undoubtedly you know, yeast treatment includes 1) total avoidance of all sugar, restriction of white flour and fruit juice, b) lots of probiotics (my doctor recently told me 10 billion per day, which is equal to 10 regular capsules), and c) perhaps some natural herbal yeast killers (oregano oil, pau d'arco, garlic, citrus seed extract and goldenseal are common ones). if yeast is a real problem, you may want to use Nystatin or (if that doesn't work) ampotericin b as well.

    From what I've heard of the FFC's, they can be helpful in giving advice, doing testing and giving prescriptions. I wouldn't do anythning they said without reading up on it or comparing notes with other people who have used their treatments, though.

    Good luck. Hopefully I'll be feeling better soon and we can chat further.....
  10. taysmom

    taysmom New Member

    Thanks for the information. I hope you start to feel better soon. I've been on the couch all morning myself and now have to go pick up my 4 year old from daycare!!! Hang in there!!

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