treat reactivated virus or fix the immune system

Discussion in 'Fibromyalgia Main Forum' started by moreinfoplease, Sep 9, 2008.

  1. moreinfoplease

    moreinfoplease New Member

    Something I don't understand:

    if viruses are reactivated due to an impaired immune system (as it is therorized by some)

    don't we have to repair the immune system

    so that it can once again control illnesses we were previously exposed to

    rather than take (potentially dangerous) medications for the viruses.

    I'm not ranting, just trying to understand. Help appreciated.

  2. Catseye

    Catseye Member

    Yes, but medical doctors don't do that because the immune system is centered in the gut and they don't have the ability to treat the gut. You pretty much use diet and supplements for that and they just don't deal with those, only drugs. You do need to do this, but you need to look elsewhere than a medical doctor for help. My expert is at becomehealthynow and he's doing a fine job of getting my immune system back in shape. I can tell it's happening, too. I've stopped getting any cold sores when I eat nuts and I fought off a "stomach flu" pretty fast.

    I didn't know this in the beginning and I went through a very long and torturous round of antiviral chemotherapy. That was back when I was ignorant about how they operate and I believed everything my doctor told me. I paid a very high price for believing him.

    good luck

    karen
  3. moreinfoplease

    moreinfoplease New Member

    karen: do you mean that you get your info from becomehealthynow or that you got a consult with a dr as is advertised on the site?

    grammy27: have you found anything to be particularly helpful at rebuilding the immune system so far?

    kathy: I am glad you were able to find answers for you daughter. I agree with you that testing for everything makes sense, if only I could find drs who agree with you! BTW, I finally got a dr to order an EBV test a couple weeks ago. I asked for the results to be sent to me by mail after they were reported by phone to be "normal", and there are no numbers listed! Just positive/negative. I left a message on monday saying I want the numbers, but haven't heard back. Did your daugter have a recent case of EBV and did she have any sign or risk of a tick bite?
  4. brainfoggy

    brainfoggy New Member

    I think what Kathy meant was that once you get to the bottom of what is causing immune suppression and treat it accordingly (with anti-virals, antibiotics, supplements, diet) the immune system will eventually become strong again.

    All of these things mentioned help strengthen the immune system if you are killing the bugs that are causing the suppression. I think it takes time and is dependent on how much luggage you are carrying around and how long you've been ill.

    Things that help strengthen the immune system that I take:

    High doses Vit C (calcium ascorbate powder to bowel tolerance)
    Maitake and cordeyceps mushrooms
    transfer factor multi-immune and lyme
    antibiotics
    probiotics (florastor, bio-k)
    Pro-boost

  5. Rafiki

    Rafiki New Member

    When I was first ill in 1979 one of the notable findings was that I tested neg. for EBV early in the illness but had soaring titres a few months later. I remember my doc saying that they were "off the charts" and wouldn't be expected to be that high even during the most accute phase. So, back then they were doing more than neg./pos. tesing. I would think they still do.

    Peace out,
    Rafiki

    PS I guess I should have said I live in Ontario :~)
  6. Rafiki

    Rafiki New Member

    A friend of mine is a well respected infectious disease doc. He told me that all stress causes reactivation of HHV. He said if you break your leg you'll test positive for HHV.

    I share your confusion Moreinfoplease. Even though I have a history of reactivation of both EBV and HHV6, I have not taken antivirals and would not without more evidence. I do not think that this decision is necessarily better than the decision to take them. It is simply the decision I am most comfortable with.

    I do treat the bacteria. I'm not totally cool about that for various reasons but I use an antibiotic (Doxycycline) which has been around a long time and has a history of being used long term -- malaria prevention, for example.

    But yeah, I agree that this approach does not seem to address the underlying problem.

    Peace out,
    Rafiki
  7. Rafiki

    Rafiki New Member

    Aside from the first reactivation of EBV following the viral/bacterial/? infection that triggered my illness, reactivation of HHV has happened to me when I was stressed and/or trying to do too much. When caring for a sick child -- a combination of being too active, receiving waaay to much stimulation and being scared silly almost all the time -- HHV6 reactivated and I was very, very ill.

    As I said, for what it's worth.

    Rafiki

  8. ladybugmandy

    ladybugmandy Member

    hi znewby. i do not think you have to go to the US to have blood sent to the US labs. i just get my doc here to sign the forms (since i am paying out-of-pocket they don't mind). then a nurse friend of mine draws the blood, and i call fedex to ship it overnight to the lab.

    when i need to send blood on dry ice, i just order some dry ice and use a special box i get from my workplace (i work(ed) at a hospital). i am sure you can also purchase these boxes.

    sometimes the US lab will send you a special shipping box with the test tubes inside and instructions.

    i guess i was lucky i worked at a hospital because my friend centrifuged the blood for me when that was required. i guess not everyone would be able to have this done unless they know a nurse or lab tech.

    sue:)
  9. Catseye

    Catseye Member

    I enlisted the help of Dr. Farr after filling out his brief quiz and getting my free phone consult to speak with him. Everything he said was consistent with what I already knew about cfs. He didn't sound like a salesman and was very confident in his ability to find out what was going on. He's doing remarkably well at narrowing down my problem areas. He says cfs is like an onion, you have to peel of layer by layer, one thing at a time, to treat the various tissues and organs and metabolic systems. Also, like kathy said, you go after things like heavy metals (after you test for them, he does everything by testing) but he has his own particular order of things to do first since they all affect each other.

    The first things we worked on were inflammation and digestion, which includes the immune system and gut. They're all tied together. Everybody's plan is tailor made and none of us would be doing the same things in the same way if we all walked into his office at the same time. We'd all be selected for different tests and have different results on some of the same tests and we would have various diet changes and supplements recommended. His intent is to fix the body. He did say that lyme was particularly hard to get rid of.

    I'm doing everything by phone and email since I'm so far away. He said he could literally order about $15,000 worth of tests for all of us and understand what's happening, but he can tell a lot from the questions you answer about your symptoms. The short quiz for the consult is not that long. But when I registered and had to answer all the different questions for the organs and functions that he selected for me, it was over 200 questions and took me a couple of days to finish. He is very thorough and very specific.

    What he does is way different from what a medical doctor does. When medical doctors order tests for you, they are pretty much looking for a drug to give you. That's what they have in mind when they order tests. They work with drugs, tests and surgery. The tests find drugs or surgery for you. Since they can't treat the immune system or digestive system with drugs, they just don't use these tests and so they don't know anything about them.

    If you happen across a medical doctor who has also studied naturopathic medicine and nutrition, then maybe he would be able to. But doctors have their own peer pressure to contend with and going against the grain by using these nonstandard tests and supplements is frowned upon. Most doctors like their cushy jobs and don't feel like stirring the pot.

    good luck

    karen
  10. Mikie

    Mikie Moderator

    IMHO, we have to do both and not only with stealth, chronic viral infections, but also bacterial and fungal infections. In addition, I believe we have to deal with fibrin overgrowth in our bloodstreams if it is present. It often accompanies chronic infections.

    I keep both Acyclovir and Doxycycline on hand because if I get sick or run down, I can feel my old infections trying to reactivate. Right now, I've just recovered from food poisoning and am dealing with the worst allergy season I've known since moving to FL. I started to feel as though I were coming down with a virus and my lymph nodes were swelling. It is likely an old Herpes-Family Virus trying to reactivate. There is no fever, so I am not taking the Doxy.

    In terms of trying to rebuild my own immune system, I take probiotics, undenatured whey, and have taken the transfer factors which target specific pathogens.

    Love, Mikie
  11. xchocoholic

    xchocoholic New Member

    This is a really good explanation of how our immune system is located in our guts.

    http://www.loveyourbelly.com/resources/gut.html

    I took on gut repair 3 years ago and it's proven to be very helpful. You can check out my profile to see the details.

    We all have our own "onions" to unravel, so your CFS protocal won't be the same as mine. Healing the gut / diet is a good place to start though ...

    Your local health food store my be able to help you find an integrative or naturopathic doctor in your area who can run the correct tests for you.

    Gluten intolerance as well as other food intolerances, like dairy or corn, is a growing problem in the US, since we are eating these foods all the time. Eating the same foods over time can lead to an intolerance to them.

    IMHO, It's these digestive diseases / gut dysbiosis / leaky gut cause most, if not all, of our symptoms.

    HTH .. Marcia
    [This Message was Edited on 09/10/2008]
  12. SkeptikSharon

    SkeptikSharon New Member

    Hi Barrowinnovations,

    I have questions about Dr. Farr. How did you find him? You said you are doing everything via phone and email with him? Is he covered by your insurance, or do you have to pay out of pocket?

    I need to find someone who knows how to peel away the layers of FM (don't think I have the CFS portion or at least not full blown yet), and the docs I have found only have parts of the puzzle. But I think until I can figure out what is really truly going on in all levels, I'm not going to get well by treating symptoms.

    Do you have the website address for him? I would greatly appreciate any info you can give me! =)
  13. Mikie

    Mikie Moderator

    Wow, you have been doing a lot to heal. I'm impressed. Yes, many people stop treatments when they feel worse without realizing that sometimes, it has to get worse before it gets better.

    I did have to go extremely slowly with the TF's. They caused such an immune reaction and detox. I pulsed them for a long time after the initial several months but haven't taken them now since I can no longer get them through ProHealth.

    I always said I have a cast-iron gut. I never got sick from food. As sick as I was just following eating cooked hamburger patties which had been frozen, I'm guessing it may have been e-Coli. I still have some midriff pain but it's getting better all the time. If it keeps up, I will have to see the doc so he can try to determine what it was. There was an e-Coli outbreak from frozen hamburger patties just after I got sick but it was a different company. My guess is that, as careful as I tried to be, I somehow contaminated the cooked meat with a untensil used on raw meat.

    Good luck with the allergy shots. ABC World News did a report in which they mentioned that global warming is causing weeds, like ragweed, to grow larger, produce more pollen, and take over greater land areas. Oh, swell! Just what we need--more assaults on our immune systems. Let us know how you are doing on the shots.

    Love, Mikie
  14. Mikie

    Mikie Moderator

    Wow, you have been doing a lot to heal. I'm impressed. Yes, many people stop treatments when they feel worse without realizing that sometimes, it has to get worse before it gets better.

    I did have to go extremely slowly with the TF's. They caused such an immune reaction and detox. I pulsed them for a long time after the initial several months but haven't taken them now since I can no longer get them through ProHealth.

    I always said I have a cast-iron gut. I never got sick from food. As sick as I was just following eating cooked hamburger patties which had been frozen, I'm guessing it may have been e-Coli. I still have some midriff pain but it's getting better all the time. If it keeps up, I will have to see the doc so he can try to determine what it was. There was an e-Coli outbreak from frozen hamburger patties just after I got sick but it was a different company. My guess is that, as careful as I tried to be, I somehow contaminated the cooked meat with a untensil used on raw meat.

    Good luck with the allergy shots. ABC World News did a report in which they mentioned that global warming is causing weeds, like ragweed, to grow larger, produce more pollen, and take over greater land areas. Oh, swell! Just what we need--more assaults on our immune systems. Let us know how you are doing on the shots.

    Love, Mikie
  15. ladybugmandy

    ladybugmandy Member

    hi all. not sure i understand this post.

    isn't it genetic factors that determine whether we are susceptible to chronic infections and CFS?

    if so, how can we "fix" this immune system defect w/out gene therapy?

    sue
  16. Rafiki

    Rafiki New Member

    I had sky high EBV titres quite some time (several weeks) after first getting ill with something that certainly looked like mono but initially tested negative. That was in 1979.

    I tested postive for HHV6a more than 20 years later which was the first time I was tested for it. I also played host to a ubiquitous mycoplasma.

    I have not had NK tests and I don't know if I've been tested for CpN.

    I'm afraid that after all this time (1/2 my life as of this year) I'm not as proactive as I might be. I had a lot of energy for this in the first decade or so but can now barely bring myself to see my GP. (I am 16 years late for my baseline mammogram :~)

    If I remember correctly, you have a serious auto-immune disease. It would be interesting to see how your test results compare to someone with ME.

    Peace,
    Rafiki
  17. Rafiki

    Rafiki New Member

    Yes, HHV6a is a very interesting little critter. The fact that people with ME and people with MS show a similar pattern of activation seems a promising line of inquiry given the overlap of symptoms.

    Very interesting about your genes. Well, interesting and a huge bummer.

    My Infectious friend was talking about all the Herpes family reactivating in any healthy person when they are stressed. (I'm having a major brain fart moment here but EBV is a herpes virus too, yeah?) Anyway, his point was that "stress", and he was speaking of any stress to the organism and not emotional stress in particular, allowed herpes to reactivate. His example was a broken leg.

    Like you, I was someone who dealt with stress quite well. In fact, I enjoyed an exciting, eventful, stressful life. Crazy thing is, I know I would jump right back into exciting, eventful, stressful given a week without flattening ME. I don't learn :~) Maybe I share your gene expression and ME is keeping me alive... could be.

    I don't think that stress is the cause of ME. Did you know that the Buddhist Nun, writer, thinker and world class meditator Ani Pema Chodron has ME? So, case for emotional stress or poor coping skills closed, me thinks.

    I'm with you in suspecting that HHV6a may be a key piece of this puzzle.

    I know I'm rambling and babbling here. Sorry to put you through this :~)

    Sat looking off into space considering delete but I'm going to inflict this on you, you poor woman!

    Peace to you,
    Rafiki

    ETA More confusing spew. argh
    [This Message was Edited on 09/10/2008]
  18. Catseye

    Catseye Member

    Hi Sharon,

    I found Dr. Farr by searching for help with the guts. I found a site back in January called beatcfsandfms.org and they said that treating the guts was a crucial part of treating cfs/fibro and they explained why. So I sought out an expert and came across his site, becomehealthynow. He fills out forms for insurance, I've seen them, but I don't have any so I don't know anything about what they cover. Also see my stool analysis thread "toxic guts, toxic body, why do a comprehensive stool analysis."

    Hi Sue,

    I wouldn't assume you have genetic factors. You may have factors like a weakness to digesting certain proteins like casein and gluten. Still, you treat the gut which is the heart of the immune system while you avoid gluten and casein (milk protein). Look at Asians, they don't drink milk because they can't digest it properly. I don't think we can, either, not as well as we'd like. It causes the immune system to make antibodies and makes you hypersensitive to other allergens like cats and pollen. I got rid of 30 years of hay fever by giving up all forms of dairy.

    This disease is treatable with the right doctor, but not a medical doctor because you can't treat the immune and digestive systems with drugs. Check out the link xchocoholic provided above:

    http://www.loveyourbelly.com/resources/gut.html

    If your guts are messed up, then you're messed up. Gut dybsiosis alone can cause chronic fatigue. Have it for a long time and every opportunistic infection will find its way into your body. Did you see my post "toxic guts, toxic body, why do a comprehensive stool analysis?" That explains what tests I did and what they showed.

    I asked Dr. Farr once how many CFSers he has treated and he said hundreds. Then I asked him how many had normal stool analysis results and he said none. That was what I already suspected when I finished looking through beatcfsandfms.org. Medical doctors don't do this test because they can't treat it. Find a health expert who is experienced with it, like mine, and you can get tons better. I'm doing a low carb diet and supplements, including many for digestion.

    Medical doctors won't treat digestion or the immune system because these things require supplementation of certain nutrients and things like stomach acid. Doctors only prescribe drugs and since drugs need to be detoxified by the body, they cannot be used to assist in the treatment of the detoxification process. If you are having trouble detoxing, you can't take a bunch of things you need to detox.

    The liver can only handle so much. It needs certain nutrients and metabolites to change the chemicals you're detoxing into things that it can eliminate from the body. Giving it drugs will just congest it and it will have a harder time doing anything. The liver malfunctioning and having a hard time digesting food is a big part of cfs. It's not necessarily indigestion like in the usual sense with heartburn and stomach discomfort. It may be, but you just aren't processing food and absorbing and assimilating nutrients like a normal, healthy person. And you can't really tell unless you do a stool analysis.

    good luck

    karen
  19. simonedb

    simonedb Member

    hey barrowI and others, I get confused on whetehr to do a low carb diet or not, I think it was my research into PCn tht said for that or porphrias one should eat a 70% carb diet, I don't know if I have that stuff but I certainly could with my symptoms. I do have hypogylcemia so i do best though to have protein with evry meal......
  20. Catseye

    Catseye Member

    I don't know anything about porphyria - why do they want a high carb diet? Especially if you have hypoglycemia? That was one of my problems for 5 1/2 years. It got so bad, I would have to drink juice and eat in the middle of the night. It was horrible. Finally, after being on this low carb diet for a couple of weeks, it started to taper off. Then after a couple of months or so, it was gone. Now I never have even a hint of hypoglycemia. I can go several hours without food and eat at normal meal times and not a bunch of times in between. The carbs I was eating was part of the reason I had hypoglycemia in the first place.

    My diet consists of chicken, eggs, beef, veggies and raw nuts. Absolutely no grains or root vegetables. But I got a stool test done and my health expert was able to see what was wrong with digestion and the immune system by looking at the test results and that's how he was able to recommend a proper diet and supplement plan for me.

    If you google for porphyria, you'll get the medical profession's take on it. If you google for "porphyria natural remedies", you'll get a better idea of what to do for it, including diet and supplements. The medical treatment won't take into account the digestive system or immune system. They treat those as always working properly and never malfunctioning. But with these diseases, you have to avoid certain foods and treat digestion and the immune system. Medical doctors are not nutritionists and don't have a clue about diet or food. My first doctor, a digestive disease specialist, recommended whole wheat grains and dairy even though I told him I had CFS. Those are the first things you need to give up. Too bad you can't sue doctors for just being stupid. See my stool analysis thread for more about testing.

    good luck

    karen