Mikie, need your insight

Discussion in 'Fibromyalgia Main Forum' started by KMD90603, May 24, 2006.

  1. KMD90603

    KMD90603 New Member

    I had recently went back to see my infectious disease doctor after my CFS had relapsed badly. He ran tests such as CRP, ANA, EBV antibody panel, and parvo. Everything was normal except the parvo one showed a past infection. I'm concerned, because I had a mono-like illness 9 years ago, which I strongly believe sparked my CFS. When I went back to see my ID doc to review the test results, I was prepared to ask him to test for CMV, HHV-6, and any others he could think of. But, he said he does not believe in just doing random tests.

    My question is, do you think I should insist that he test me for some of these other viruses? He's taking the approach that I'm doing well in school and at home, and that I'm functioning, so let's not do anything about it. However, I'm taking the approach that I'm running low-grade fevers EVERY day now, and I feel like I need to find out what's causing it.

    I guess I'm just at a loss as to what I should do. Should I be more aggressive in figuring this out? And, what if he still refuses to do the testing? Is there another kind of doctor that I should see for this? Please, any advice you can give me would be greatly appreciated. Thanks in advance.

    Hugs,
    Kim
  2. jane32

    jane32 New Member

    SOrry to butt in! But I too have mono 9 years ago. My parvo showed past infection and so did my EBV levels but it did not show current infection. (However they did put me on valtrex-I go to an FFC) Everything else was normal. I would push for the tests for peace of mind. I don't think you can ever be too aggressive in trying to find out answers.
  3. carebelle

    carebelle New Member

    I don't mean to sound weird or dumb, but are you talking about the Parvo that Dogs get and die from?I was told by a vet that people cant get Parvo.Is it different or spelled different?
  4. Mikie

    Mikie Moderator

    This is a tough one because in a sense, the doc is right. They really can't justify testing for everything we might possibly be sick with. The FFC's do run a lot of these tests, but not everyone's insurance pays for it. Especially if a doc is in a managed-care plan, it's an uphill battle.

    The second thing is that routine blood tests don't always indicate chronic stealth infections. PCR DNA is about the only way to find some of the infections and even then, these expensive tests often return false neg. results.

    So, what is a sensible approach? My docs and I decided that the old empirical approach is best. In my case, we knew it was a mycoplasma infection which triggered my illnesses full blown, so giving me the Doxy seemed prudent. Sure enough, it started to work.

    A lot of docs who treat CFIDS are using antivirals empirically with good results. Is this doc willing to prescribe an AV? If not, you might want to find a doc who is. The Famvir I took really helped me right away.

    Finally, one can choose to try the transfer factors. I took the TF C and the TF 200 sold here as together, they seem to target most of the usual pathogen suspects. One needn't have an Rx to try the TF's but I do think it wise to discuss them with one's doc. It was my pain doc who suggested I look into them.

    Ideally, the docs would test us for all kinds of things, but as you can see from above, a lot of things could still be missed. There is not much risk in trying the meds or TF's empirically and the payoff, if they work, is enormous. I can certainly understand your frustration but I also want you to know that you do have options. You can print out articles and papers, like I did, from prominent docs to show to your doc. You can find another doc if this one won't help you. Finally, you can give the TF's a try. The TF's carry less risk than meds and they train the immune system, something the meds don't do. They really produce a big immune response and one can feel worse before feeling better, but that is true of all the treatments which target pathogens.

    I know how horrible it is to get up every day feeling as though you have the flu or a virus. Too many docs dismiss this or simply do not know what to do about it. It's common in PWC but it's not normal nor is it acceptable. It's indicitive that there is chronic infection at a low level which escapes the immune system. We can never get well unless these infections are addressed. If our docs won't help us, we have no choice but to do things on our own. There are herbals which kill pathogens too. Colloidal silver is another good treatment option. Zappers will kill pathogens in the bloodstream.

    I believe taking meds is the best way to start. If the infections have caused hypercoagulation, it needs to be addressed as well. The HEMEX website has all the info on this and how to get the blood tested for it.

    Finally, probiotics, undenatured whey, and colostrum are excellent at helping rebuild the immune system.

    BTW, I am not a medical professional and this isn't intended to be medical advice. I'm just pointing out that there are options. I hope this helps. Best of luck and please, let us know how you make out.

    Love, Mikie
    [This Message was Edited on 05/24/2006]
  5. Mikie

    Mikie Moderator

  6. Chootik

    Chootik New Member

    Thanks for all the great info you post all the time.

    I have a quick question for you. I've just started taking Probiotics and it's helped a lot with my brain fog! Any idea why this could be? Also how do Probiotics, Undentured Whey and Colostrom build up the Immune System?

    I'm just curious, because I have Autoimmune Thyroid and don't want to do anything that would make the Immune system too reved up to have a (-) effect on the Autoimmune.

    Thanks,

    Maryam
  7. KMD90603

    KMD90603 New Member

    I know you are not a medical professional, but you have such a wealth of knowledge and I love reading what you have to say. I knew you would be the best person to ask, and I think you are right.

    Maybe I won't be able to figure out what virus is causing all of this, but it still wouldn't hurt to treat it. I'm going to call my doctor and ask him about possible antivirals as well as TF. All I know is, something needs to change. What I'm doing now I think is a pretty passive approach. I continue on my daily life, and when I start feeling sick, I lay down and rest. But, the problem comes when I'm in a place that I cannot lay down. I hate having to plan my day around when I think I'll feel the worst.

    Thank you so much for responding to me. I truly appreciate all of your insight. I'm going to print out your message and talk to the doc about some of these things.

    Gentle hugs,
    Kim
  8. Scapper

    Scapper New Member

    Just thought I'd add in my opinion, hope you don't mind :)

    The problem with asking for an anti-viral from your current doctor is that you're not showing a current infection. I would think he may give you a hard time on this one. I'm not saying it's not worth a try though!

    The most common viruses that are usually tested in PWC are:
    HHV6, EBV, CMV & coxsackie and mycoplasma (however w/ myco there are many different strains of this)

    It is hard to test for too much at once due to insurance issues, as Mikie mentioned. However, I personally would push for these tests and make sure that each of these viruses are checked. If he does cooperate with the anti-viral solution, then perhaps that will help with your current immune reactions.

    The problem with not searching for the problem and assuming you're doing OK, is that your body is telling you in the way of fevers and fatigue that everything is not ok.

    Good luck w/ your doctor. Let us know how you do.

    scapper
  9. Mikie

    Mikie Moderator

    Maryam, the probiotics replace the good bacteria in our guts which decrease over time due to age, antibiotics, illness, etc. The gut needs the good bacteria to break down our food so we can absorb the nutrients and to prevent Leaky Gut Syndrome, a serious condition. I think it is always wise to discuss supplements with one's doc. In the case of autoimmune conditions, it may not be wise to rev up the immune system. The colostrum contains immunity which a mother cow passes down to her calf. It is similar to the first mother's milk that humans produce and is why it is thought to be healthier to breast feed babies. The undenatured whey produces glutathione which Dr. Cheney believes is important in fighting CFIDS. If you go to the Store here, you can print out the info on these and give it to your doc. He or she can advise you on it.

    Kim, I hope this helps. As Scapper points out, it is better if one can be tested and the pathogens identified but unless the expensive PCR DNA tests are run, it may not be possible. Most of the tests docs rely on aren't sensitive enough to detect stealth viruses. Thing is that if there are any of the Herpes-Family Viruses present, the treatment will be the same--an antiviral. HHV-6 doesn't respond as well to AV's and that is why I like the TF's. They are evidently more efficient at driving HHV-6 into latency.

    Mycoplasmas are bacteria and not viruses. Dr. Nicolson believes that some have been altered to produce viral properties which make them more virulent. AV's will not take care of mycoplasma infections. The only way to detect mycoplasma infections, which are not currently active, is the DNA test. Even then, there are a lot of false neg. results and if the test is neg. another should be performed. ABX treatments, or the TF for mycoplasmas, are probably the best way to go but there are herbals which are antibiotics.

    PCR DNA has turned up tiny pieces of viral DNA, called Prions. Researchers believe that even these incomplete DNA fragments can cause heart damage. I feel very strongly that we cannot afford to ignore our chronic stealth infections. The question is how to get docs to perform the tests, tests which are sensitive enough to detect the pathogens. That is why, in a less than ideal world, we may have to ask to be treated empirically. My specialist is a physiatrist, a doctor of physical medicine. He just got interested in FMS and studied everything he could get his hands on regarding FMS and CFIDS. He was a God send to me in helping me to put togehter an empirical plan and writing the Rx's I needed to implement the plan.

    Good luck to you whichever way you end up going. Please do keep us updated.

    Love, Mikie
  10. KMD90603

    KMD90603 New Member

    I appreciate you sharing all of this with me. I think I may look around for CFIDS specialists in my area. My doctor is an infectious disease doctor. He's great and he does believe in CFIDS, but has not done a thing for me in the last 2 years, except of course blood tests and then charging a $30 co-pay. So, I may do some searching for a new doctor who is a bit more knowledgable about CFIDS and treatment.

    All I know is, something's got to change. It's not normal to feel like this every single day. I want answers, but even more than that, I want to do something about it. I cannot live off of Tylenol and Ibuprofen for the rest of my life.

    Thank you again for taking the time to respond to me.

    Kim
  11. Mikie

    Mikie Moderator

    You are more than welcome. Most who have used ID docs have not gotten much help. There seems to be a disconnect with them in understanding the nature of the kinds of stealth chronic infections we have. Good luck in finding a doc who can help you.

    Love, Mikie

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