Antibiotic?Antiviral?Diflucan/Probiotics?

Discussion in 'Fibromyalgia Main Forum' started by monicaz49, Feb 16, 2007.

  1. monicaz49

    monicaz49 New Member

    I already posted on this...I just have major fog and I cant absorb all the postings on this issue at once.
    Ive been sick for two years.

    Only diagnosis ive received are...
    Candida(homeopathic dr.), CFS/Fibro(Kaiser Rheumetologist), Lyme(Igenex test, Lyme literate Dr). Oh and lets not forget "depressed", which i wasnt until recently from dealing with this wacky health condition.

    None of the above illnesses can be proven!
    Here are my issues

    chronic dizziness/balance problem
    constant exhaustion
    head pressure/swelling
    body pain all over all day
    muscle weakness
    inner tremor feeling
    tinnitus (ear pressure, fluttering, popping and ringing)
    blurry vision/ distorted sensation
    concentration/memory probs
    irritability
    nausea
    general chronic anxiety
    insomnia
    occassional muscle twitches/jerks
    numbness in extremities
    alcohol intolerant
    hypoglycemia
    crave sugar
    symptoms of dysautonomia
    occassional heart flutter
    occassional short of breath while doing nothing
    intolerance to heat, inability to sweat
    allergies
    severe irritability during pms
    sometimes itchy feet
    never had acne ever then had a severe breakout that lasted a year.
    frequent uti's
    tightness in throat
    occassional tight weird feeling in my left bicept
    low body temp avg 96.6
    all over ill feeling, weak, feel toxic.

    Ive been tested for everything from ebv to thyroid to estrogen to mri's, etc etc.

    Whats confusing is things like tinnitus can cause alot of the issues but also can just be a symptom of something bigger.

    I dont know what or who to believe. Some INSIST i do not have lyme yet i show Igenex positive, and have many many symptoms. Some say CFS cant cause all that, but yet ive been diagnosed w/ it. Candida can cause all of this...yet my docs wont treat it cause im supposedly "healthy" and there is no real test for that anyways.

    WHAT THE HECK.
    Im more confused than i was 2 years ago..and just as sick.
    I dont want to gamble with my health and already super sensitive body reactions be experimenting with long term antibiotics needlessly or whatever.

    Anyone know the right path?! Help me find the yellow brick road.

    Ps..thx everyone for replying to my last postiing!
    pss...my cousin has fibromyalgia, ibs, numb face, 3-d like vision...i dnnt know whats wrong w/ her either!




  2. AllWXRider

    AllWXRider New Member

    I ran a hair analysis and found Lead, Antimony & Cadmium at 4X the threshold of healthy ppl. My Arsenic levels were at 1.1X.

    Toxic metals attach themselves to enzymes. Enzymes make and break things as biological catalysts. With the wrong metals attached, they make wrong things. To date, there are ~3000 enzymes in the human body.

    I got a hair analysis kit from 1to1vitamins and it cost $60. I was able to read the results on line.

    Lead and Mercury weaken the immune system.
    Cadmium inhibits the conversion of thyroid hormones
    Arsenic shuts down enzymatic reactions, WWI nerve agent!
  3. bewell4

    bewell4 New Member

    i have heard of "miracle" type cures from /of people who addressed candida. i meant to bite the bullet and ask one of my docs for nystatin, but ran out of time in my appt. maybe this is better. i have a (purportedly) excellent probiotic and i guess it is worth trying alternatives (olive leaf extract, grapefruit seed extract, whatever) before the prescription. this candida topic is so overwhelming...but i got about a dozen books from the library, and read them over time, and actually feel like i have enough clarity to give it a go. if you have the energy and motivation, i think it is worth a try. good luck!
  4. Slayadragon

    Slayadragon New Member

    You don't need a doctor to treat candida for you. You can do it yourself, with the following:

    * Don't eat any sugar/sweeteners, any white flour or white rice, or any fruit juice.

    * Use large quantities of probiotics. 60 billion per day is what my doctor recommends. (I believe this is based on work done by Dr. DeMeirleir.) This is a very high dose, and so you will have to get high-dose capsules (preferably with a number of different strains) to achieve it. (My doctor is not much into supplement sales, but he does have probiotics compounded with 60 billion units--with 18 strains--in one capsule, for about $1.50 per day.)

    * Use an herb (one at a time) to kill yeast. Oregano oil may be the most potent. Other potentially useful ones are pau d'arco, goldenseal, garlic, citrus seed extract, and caprylic acid.

    If you start feeling a good bit worse, you're likely having die-off. It won't make you worse in the long-term as antibiotics might, though.

    Nystatin will help you go quicker, if your doctor is willing to prescribe it. But going more quickly isn't necessarily a good idea with yeast anyway.

    If you're trying to get rid of yeast, taking antibiotics will be counterproductive.

    Hope this is clear enough.

    Best, Lisa

  5. monicaz49

    monicaz49 New Member

    Thanks

    First...yes..i thought i had copper but no. No overload on any metals via a hair test.

    Also, if i have systemic yeast...nystatin will not be effective. I will need something like diflucan. I think ill try that candida diet you mentioned. However, i am hypoglycemic so not eating right is horrible for me. I need things like milk from time to time. And im confused..can i have like wheat bread?? Is it the yeast or the white flour thats bad? Dumb question i know.

    Also i tried that spit test. Immediately it looked like a long web that just sank to the bottom of the glass. You arent suppose to see the results for 20 min though. At that time there were no strings. Just lots about 5 min after i spit. So who knows.

    Anyways..thanks all. You are all so supportive and i hope to be to you as well. :)
    Have a wonderful weekend.
  6. Slayadragon

    Slayadragon New Member

    I've always heard that the cooked yeast in bread is fine with regard to candida. I wouldn't eat raw bread dough though. And beer is iffy as well.

    Most "wheat bread" is made primarily with white flour, and thus should be avoided. A few brands have only wheat flour (I buy one made by Brownberry for instance), and those should be okay. Brown rice is thought to be fine too.

    Of course, as was discussed in some of the posts on the Controlling Yeast post, there is one proposed candida diet that suggests basically no carbohyrates at all. For those of us who are prone to candida because of long-standing illness like CFS, that is not very healthy nor practical.

    Let us know ho you're doing.

    Best, Lisa

  7. Slayadragon

    Slayadragon New Member

    I seem not to have lyme (including no bands on the Western blot and negative on the other tests), but I'm wondering about something.

    Cheney says in those DVD's (from Sept. 2006) that CFS patients are especially prone to yeast, lyme and chlamydia pneumoniae. (He claims it's due to the "anaerobic environment" of their bodies, but....whatever.)

    Anyway, I do believe that if you're an otherwise well person and have lyme or c.p., it's best to get rid of it.

    What if you have CFS as well as one of those things, though? Do people improve (short-term and long-term) if you try to address them?

    I honestly have no idea what the answer is, and am thus interested in your option.

    (Or the opinions of anyone else reading this post, of course.)

    Best, Lisa

  8. Slayadragon

    Slayadragon New Member

    I actually don't disagree with you at all. Yours are my instinctive conclusions, although obviously it's hard to know what's right and what's wrong at this point.

    Cheney obviously flits from idea to idea, and his repeated suggestions that he's now found the "heart" (or whatever) of the matter are overdone.

    Still, from what I can tell, his scientific methods are sound. And I don't think that anything that he's found is wrong, per se. Or at least, everything that he's announced has seemed relevant to me, and I'm about as classic in my CFS (except for the lack of fibro) as it comes.

    I do think that "agitated exhaustion" is a key component of our brain problems and that Klonopin helps to get deeper sleep. (I know some disagree, but that was a major turning point for me.)

    His observation that CFS sufferers are low in HGH and might be helped by it if they could tolerate it seems exactly right. I tried it years before he made that comment, and found exactly the same problem that he saw in his patients. I'm most definitely low in it.....a very bad ankle sprain that had not healed at all in three weeks was miraculously almost repaired totally after only two days of HGH shots. (I was dead in bed those two days, but it was worth it. I am pretty sure I still wouldn't be able to walk---a year later---if I hadn't used them.) If indeed the AV's work, I'm going to move on to using HGH, since I think there's an awfully lot of repair to be done.

    I don't know about the undenatured whey protein helping with energy, but it certainly has been useful for detoxification for me. I never would have tried it if it hadn't been for his comments.

    I didn't have any success with kutapressin or his other Th1/Th2 stuff, but I think my immune system problems and viral loads (based on my ImmunoSciences tests and results to Famvir) were simply too messed up to have an overt effect. (It could have helped at some deeper level though.) Nexavir seems to be my biggest hope at the moment to support my immune system if/when I get better.....certainly I don't want to relapse again.

    The Atrium Douglas products (particularly the frozen extracts) that my doctor frequently uses have been helpful to me, I feel quite sure. I think those were originally Cheney's "discovery." And I'm increasingly convinced that mesenchyme may be more important for me than adrenal or thymus (at this point.....adrenal used to be crucial). I'd kind of like to give Cheney's custom all-mesenchyme formula a try, just to see if it is helpful. (I thought this to begin with, and the Chinese doctor's apparent belief that a large part of my structural problem is spleen-related---and that the spleen is apparently made almost soley of mesenchyme---makes me slightly more convinced.)

    I've not yet watched the entire DVD presentation (orally presented info is hard for me to absorb), but the data he presented was fairly convincing. I don't think that CFS problems stem from the heart......if for no other reason than that only half of Cheney's own patients seem to have heart problems. My doctor thinks that it's a virus of some kind that's damaging the heart, which makes sense to me (since I'm increasingly of the opinion that a high percentage of all health problems have a viral component).

    Nonetheless, knowing that CFS patients have heart damage is really good to know. It makes me much more inclined to pursue the HGH and mesenchyme route when/if I do get better, since structural repair takes time and energy.

    I will say that his intramuscular magnesium injections did not seem to help me. And now I don't think I can take them, since I can't use any shots that come from bottles with rubber stoppers. They do seem to have helped lots of people though.

    I agree that both yeast and chlamydia pneumoniae (both of which I have) seem opportunistic to me. With my messed-up immune system, how could I not have stuff like that? (AIDS patients do too, of course.) Cheney could be right that the anaerobic environment of CFS patients (if indeed that's the case.....I haven't absorbed the DVD's well enough to judge) might exacerbate the problem.

    Anyway, Cheney is obviously a maverick, and he certainly doesn't seem to have cured anyone. And maybe he's made more money than he "deserves." He's also overly prone to hyperbole. (Although the title of "From Fatigued to Fantastic" is far more hyperbolic.)

    But I do respect Cheney as a scientist and think most of his findings have some potential relevance for at least some of us. And having a maverick around is a good thing. It's a bit unfortunate that he has been basically the only person looking into CFS for a long time.....that's not a maverick's role. That is changing though, as more people enter the field. So I'm glad that Cheney's around for Act II of his life, even if he doesn't have "the answers" to our problems.

    I wasn't aware that lyme could cause such horrid problems (e.g. "Meadow Soprano"'s), and so it sounds like it should be aggressively treated even in CFS patients.

    What do you think of chlamydia pneumoniae, though? Some on the board think it should be treated extremely aggressively, yeast be damned. That sounds a bit of overkill to me, although maybe I'm not aware of some damage it can cause.

    My own doctor thinks that once my own immune system starts to work better, the CP will be fairly easy to kill (or, at least, not cause overwhelming yeast problems in the process). It's nice to dream that might be true.

    I can't recall.....are you starting Valcyte (or maybe another AV) soon? There are so many people trying Valcyte now that it's hard to keep everybody straight.

    What dosage are you planning to use, if so?

    Thanks much for your comments!

    Best, Lisa

  9. monicaz49

    monicaz49 New Member

    Where do you live, approximately? Do you remember a "bullseye" rash anywhere on your body? How positive was your WB from Igenix? Did you test for any of the co-infections like Babesia and Bartonella?

    HI, HERE IS THE ANSWER TO YOUR QUESTIONS....
    I LIVE IN BAY AREA CA.
    IVE BEEN A TARGET FOR BITES ALL MY LIFE. I WOULD HAVE WELTS ALL OVER MY LEGS FROM MISQUITOS/FLEAS WHEN OTHER PEOPLE AROUND ME HAD NONE.(NO MEMORY OF TIC SPECIFICALLY)
    I HAD RINGWORM AT AROUND AGE 10....IM PRETTY SURE IT WASNT BULLS EYE. IT WAS THE TYPICAL SMALL RINGWORM WITH RAISED EDGES. ABOUT 2INCHES WIDE IF THAT.
    MY ELISAS WERE NEGATIVE BUT IM IGENEX POSITIVE.
    MANY PEOPLE CAN BE POSITIVE THOUGH ( AND NOT BE SICK) SO I QUESTION IF THAT IS A COINCIDENCE OR TRULY WHY IM ILL.
    MY CD 57 IS 80. LOW END BUT NORMAL.
    MY COINFECTION TEST WERE ALL NEGATIVE.MY DOC SAIDS CFS, MY NATUROPATH SAYS CANDIDA. WE TESTED THROUGH AN OUTSIDE LAB...I THINK DOCTORS DATA. MY SCORE WAS 2+
    AND MY LLMD SAYS PROB LYME.
    I HAD ONE OR 2 LYME SPECIFIC BANDS ON BOTH IGG AND IGM. NOT CDC POS.
    I ALSO AM VERY MEDICATION SENSITIVE AND CANT TOLERATE EVEN NATURAL HERBS WELL. SO I DONT RISK TAKING DRUGS LIKE CANDY CUZ IT COULD CAUSE SERIOUS CONSEQUENCES.
    ALL THE SYMPTOMS FOR LYME AND CANDIDA ARE IDENTICAL!