Discussion in 'Fibromyalgia Main Forum' started by monicaz49, Feb 15, 2007.

  1. monicaz49

    monicaz49 New Member

    I have chronic dizziness and balance probs for 2 years along w/ many other issues. I received a cfs diagnosis. However, I was wondering how many of you actually have a balance prob/dizziness issue. I didnt think many of you do.
    I was reading that it could be cause by a virus.

    And if thats the case maybe i should try taking an antiviral.
    I just dont want to assume this is all cfs when in fact it is severe inner ear issues or a combination of both problems.
  2. Slayadragon

    Slayadragon New Member

    Try reading the thread called

    mezombie (bppv)

    It was just bumped up yesterday.

    Also read mezombie's bio. (You can find this by clicking on the name by one of her posts on that thread.)

    Best, Lisa

  3. achingbytch

    achingbytch New Member

    I went and read the mezombie post.
    I dont know if referring newbies to this thread means we should conclude that we have systemic yeast infections...does it?

    I have blood pressure that spikes, its not always high but it goes thru the roof at times, so I'm not sure if the dizziness/imbalance is from that.
    Dizziness is increasing and as my joints get stiffer the more I seem to lose my balance. I stand up and the floor seems to wave up and down in front of me as my head throbs, great oln the morning commute...doesnt quite feel dizzy, more swirling, like I'm about to collapse.
    DR. insists I take something...I'm already taking 2 types of meds, but I'm thinking I'd better behave and do what he says...:)
  4. Andrew111

    Andrew111 Member

    I have CFS and I also have dizziness problems that affects balance. An MRI also showed some congestion in the mastoid area of my left ear and my front sinuses.

    The thing to keep in mind about CFS is it's a syndrome, not a specific illness. And a syndrome is a collection of symptoms that are found to occur together. So it does not rule out ear problems, brain problems, infections (such as Lyme), etc. etc. etc. And this is why part of treating CFS includes following up on where the symptoms and tests are pointing.

    Balance issues are not always ear problems. So you might want to get help from a doctor in what the next move is. In my case, I saw a neurologist first, then ear/nose/throat doctor second.
  5. Slayadragon

    Slayadragon New Member

    Later in the thread I listed a whole bunch of things that are said to be related to CFS and dizziness, not just systemic yeast.

    The book I mentioned in the thread goes into these things in detail.

    Monica just asked if anyone else had this problem, and so I thought she might want to read about it.

    Best, Lisa
  6. achingbytch

    achingbytch New Member

    Thanks for pointing my shortsighted self to the rest of the thread, my apologies for summing up in such a way. Overall it was very helpful.
  7. monicaz49

    monicaz49 New Member

    Thank you all i will check it out!
    Actually candida was my first self diagnosis when this all started 2 years ago. None of my docs believe it.
  8. Slayadragon

    Slayadragon New Member

    I've had five "real" doctors tell me that "it exists."

    * My CFS doctor (M.D. Indiana University)
    * My hormone doctor (M.D. Stanford University)
    * My allergist (M.D. Northwestern University)
    * Two CFS-interested and well-respected general internists (on staff and adjunct professors at good teaching hospitals in Chicago--Northwestern and Rush)

    Of course, these are doctors who know something about CFS.

    (I don't talk about the problem with doctors who don't know anything about CFS, since they're never of help with any of my CFS problems. So I've actually never had an M.D. tell me that candida doesn't exist, now that I think about it.)

    Most doctors don't think that CFS exists either.

    And I'd like those doctors who don't believe that candida exists talk to someone who knows anything at all about AIDS, since it's an even bigger problem for AIDS patients than for us.

    Best, Lisa

    P.S. Monica mentions in another thread that her doctors say that you can't get candida infections unless you have a problem like "HIV or something."

    I tend to think that's exactly right. The problem is, those of us here have one of those "somethings."

    That "something" is CFS.

    [This Message was Edited on 02/15/2007]
  9. Slayadragon

    Slayadragon New Member

    I'm bumping up a thread called "Controlling Yeast."

    Apparently Dr. Lerner does not talk about much related to CFS except for viruses. I'm glad that he's working so hard on that area, of course.

    Is he one of the doctors who doesn't "believe in" candida? That would be truly surprising to me.

    In a presentation from September 2006 (available on DVD), Dr. Cheney attempts to provide an explanation for why, as he says, candida, lyme and chlamydia pneumoniae are common in CFS sufferers.

    (He makes the case that it's because heart problems cause the CFS sufferer's body to be an anaerobic environment. The frequent presence of candida, lyme and c.p. are stated as givens.)

    Dr. Teitelbaum devotes a large chunk of his book to candida problems. Except insofar AV treatments work, the information in Teitelbaum's hyperbolically named book is considered to be the default treatment for CFS patients by most knowledgeable doctors.

    Should I keep trying to come up with more evidence that candida is a real problem, or is this enough? I can go on if necessary.

    Best, Lisa

    [This Message was Edited on 02/15/2007]
  10. achingbytch

    achingbytch New Member

    As an opinionated, self diagnosing lay person who is usually on target with my own medical issues and has been very ill, I want to throw something out there I've never mentioned, to anyone.
    CFS and FM , which is what I'm diagnosed with are at least viruses but I think its a mutation of something bacterial that is transmitted LIKE a virus. Viruses are not supposed to 'get better' with antibiotics only bacterial infections respond to antibiotics. I test negative for bacterial illnesses everytime I'm sick, test negative for Rhuem, MS, lupus. 18 years ago my white count was so high (20,000K?) doc wanted to hospitalize me, husband refused with 5 kids at home. I was so ill I could not see light, rooms actually appeared darkened or black and it wasn't blindness or a sight problem. All I will say is thank god for antibiotics and I dont think we're anywhere close to understanding what either CFS or FM truly is except its bigger than we're anticipating.
  11. Slayadragon

    Slayadragon New Member

    The frustrating thing about CFS is that everybody has different symptoms. It's very hard to even diagnose a disease when that is the case.

    It sounds like you must have taken Nystatin? That certainly can cause diarrhea if taken in too large of quantities at first by people with systemic yeast. (If people don't have yeast problems it generally doesn't do anything, I don't think. It's a pretty non-toxic drug.)

    Maybe you were taking something other than Nystatin though. Or were one of those rare people who had side effects to it.

    Yeast is very similar to viruses, I think. You can guess upfront who's going to respond to antiviral treatment based on test scores and symptom analyses, but the accuracy rate is not high at all.

    The only true way to tell if someone has yeast is to treat them for yeast, just as the only true way to tell if someone has a lot of herpes family viruses is to treat them with herpes drugs. If you get the pattern of the person getting more sick and then improving (as compared to before treatment), you then know that the bugs were a problem.

    I have to admit, your comment about not taking all those supplements being good for you and it being absurd how you would need to sell a car or house to pay for them was a bit ironic. Most of the people on this board (not me) think the same thing about Valcyte treatment, you know.

    I'm glad to hear that Dr. Lerner is interested in things other than viruses. I'm glad the viruses are his focus too, though. He certainly has made a lot of progress with them, for which I am grateful.

    Best, Lisa

  12. Slayadragon

    Slayadragon New Member

    There are an awfully lot of theories that could be examined, which makes everything more difficult.

    My doctor's hypostheses are the following:

    1) One kind of CFS is caused by a single virus, as of yet undiscovered. It weakens the system, allowing all kinds of other gunk (including weird bacteria that no one's ever heard of) to come in.

    2) CFS is a grab-bag category, and a lot of people diagnosed as having CFS actually don't have the virus above (that is the root cause of the illness for some people). There could be all kinds of other causes for those people, including undiagnosed/undiscovered bacteria or parasites.

    If this is true, there's no wonder we don't understand what's going on. Hopefully we will find out soon though. I never thought anyone would have any idea in my lifetime, but things are moving pretty fast.

    Best, Lisa

  13. sammo

    sammo New Member

    ive been unwell with me,cfs,fms what ever its called on off for 4yrs but worse the past year which is why i have not been at work for 12mths. it started with dizzy spells couldnt see to walk and bad coordination aches and pains came after that and tierdness. the first doc sais depression which i laughed at, the second said cfs the rhuematologist i was referred to said fms then six months later i fainted at the shops whilst having to take a drink quickly due to dizzyness (thought it was dehydration then was flat out on the fall) and then the 1st doc said its me. i replied that it is the same as cfs to be told rather sternly NO it is completly not the same as cfs u have me !!!!!!! i have made changes to my life one was getting the stress out which unfortunatly ment my partner and i went seperate ways and with him took my best buddy my beloved dog, who had been more support to me over the past 12mths than he had. but i have found that some of my energy levels have returned and my dizzy spells gone. i didnt have a bad relationship it was a little negative on his behalf but just getting some of the responsability of someone else and the dog out of the home has imporoved my situation, sadly i still miss my dog i just hope one day he has a similar situation to cope with and then understands how we all feel coping withit on a daily basis
  14. monicaz49

    monicaz49 New Member

    thank you everyone.
    Ive read everything..even the other threads.
    Yes, to the person who said we do have "something", its CFS. You are right...but no one knows what to do for us...

    Negative Nancy
  15. krchamp

    krchamp New Member

    I have fallen 3 times in the last 2 weeks alone just from the dizziness. It is a pain.

    My first spell I woke up in the middle of the night and the room was spinning out of control. I felt like I had been on the Teacups at Disney World for the last 2 hours. I ended up in the hospital. They did all kinds of test...MRI, EKG, etc. Nothing showed up. They dxed me with inner ear and gave me antibiotics and antivert. Well needless to say, it didn't stop. It has continued and I have been to several ENT- I have no inner ear problems.

    It wouldn't hurt for you to get it checked out to make sure you don't have chronic inner ear infections or some kind of virus. Honestly, I hope you do so that you can be treated and not have to deal with the dizziness...good luck!!!!
  16. Slayadragon

    Slayadragon New Member

    Very few people are are less negative about pharmaceutical companies than me. I don't begrudge them a bit making profits, because that makes it more likely that they will have money to put into the development of drugs. I was a total mess due to mood swings before starting to take the anticonvulsant Lamictal eight years ago; due to that drug, my manic-depression isn't even an issue. I hope the same thing will be true of the antivirals.

    On the other hand, your getting Valcyte for free is at least in part due to luck. Based on what I've heard on this board, most insurance does not cover Valcyte for this purpose. People with family incomes over a certain fairly low level (which many people with working spouses or who are only partially disabled meet) do not qualify for Roche's current program.

    And Roche is being extremely generous with giving the drug to people who cannot afford it at present, due to the fact that it sees huge profit potential if it starts being prescribed for patients with CFS on a regular basis and wants to get as much evidence as possible to see if it will work.

    For drug companies to give away as much drug as Roche has of Valcyte is extremely rare, and predicated almost only on the company's belief that there may be huge amounts of money to be made on the drug in the long run. Some companies do give approved drugs for free to patients suffering from debilitating diseases (such as manic-depression), but far less frequently than Roche is at the moment.

    Insofar as I can tell, my insurance will pay for Valcyte. If it does not, I will have to pay for the drug myself. There's no way I'm going to get it with my family income. And if that happens, I certainly will pay for it (and pay for as much as it takes to get me as well as possible), just as I have paid for supplements.

    Supplements never cured me, as perhaps the AV's will. They did get me from about 30% to 60-70%, however. I thus tend to think it's inappropriate for people to make statements that it's crazy for people to spend a lot of money on supplements, just as it's inappropriate for people to make statements that it's crazy for people to spend a lot of money on AV's.

    It's possible that a lot of supplement usage carries dangers. It also is possible that AV use carries dangers. How much risk there is of each sort of treatment, it's hard to know at this poing.

    I think it's important for CFS patients to respect one another's choices with regard to trying to get well, regardless of what they do. Nothing right now is proven to work at all for more than a sliver of patients, and so we need all the options we can get. I would and have defended AV usage as strongly elsewhere on the board as I am use of supplements here.

    Anytime anyone with CFS makes an effort to get even a little bit better through any means, it seems right that we all should cheer them on and hope for the best. We get enough criticism from non-sufferers that supporting one another seems to me very important indeed.

    Best, Lisa

  17. Slayadragon

    Slayadragon New Member

    My brother acquired CFS in 1987, before anyone knew there was such a thing. He was 15.

    For a while he was treated as being depressed, even though he said he didn't feel depressed (just tired) and didn't respond to antidepressants.

    After a couple of years, my family gave up trying to figure out what to do. He's lived in seclusion with my mother ever since. Getting disability seems like a pretty lost cause, and right now he doesn't have insurance either.

    Even if there were a magic pill to get him totally better in one day, it still would be very hard for him to get a full life back.

    I'm lucky (comparatively speaking) that I got sick when I was older. I already had a life in place then, including a degree that allowed me to do pretty well-paid work on an occasional basis, a supportive husband, and the money and health insurance to allow me to pursue a wide variety of treatments.

    If I'd gotten sick in my teens, I don't think my life would be any different than my brother's at this point. Life is a very slippery slope.

    i'm glad that things have fallen into place for you as they have. Undoubtedly CFS treatments will be better a decade from now, but even two years ago they were (apart from the stuff listed in Teitelman's "textbook" of things to consider) totally non-existent.

    Best, Lisa

  18. mezombie

    mezombie Member

    Erikmoldwarrior suggested everyone with these kinds of symptoms google that. I did, and this diagnosis really made a lot of sense to me!
  19. Slayadragon

    Slayadragon New Member

    That sounds exactly what I was thinking about, except that I didn't know the name for it.

    So based on what I read in a couple of seconds of googling, it sounds like anticonvulsant drugs are the way to go if you're going to explore this possibility?

    I know a fair amount about anticonvulsant drugs, of course. It sounds like your problem may be mild enough that you have the possibility of getting successfully treated without having to take one that's too strong, even.

    I wish you lived in Chicago, because I have a truly excellent psychopharmacologist that I could recommend that you see. Hopefully you can find one in your area though. I've met one or two others that I've liked, and so as a category I think they're pretty good.

    I'm very pleased that we might have found a possible way for you to get this particular problem solved. I will keep my fingers crossed anyway.

    Best, Lisa

  20. Shalala

    Shalala New Member

    I was having problems with balance/dizziness and yes I have actually gone straight down several times (luckily I have a big rear end) ... I was also having these weird jolts/zaps/stabs in my head ... What is so strange is that I was not feeling particularly dizzy when I fell. One moment I was standing straight up then suddenly I was on my rear. I did go to the DR and I do not have an inner ear infection. I think it is just a part of this crap with have and the meds we take. The times I went down, I did not have my cane for balance. I use that outside the home since in the house I have chairs, tables, counters, walls that I can use if I need assistance with balance. I almost fell in the shower and that really frightened me (since I live alone). I have constant ringing in my head and major sensitivity to light and chemical sensitivity.

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