Discussion in 'Fibromyalgia Main Forum' started by Bunchy, Feb 21, 2007.

  1. Bunchy

    Bunchy New Member

    Hi there,

    You (Lisa) recently answered a post of mine very thoroughly ( for which I was very grateful) and wrote what you thought were causing each symptom of the very long list I gave.

    From what I could gather, you seemed to think toxins such as viruses and anaerobic bacteria (and others??) were playing a big part in my illness.

    It is strange in the run up to and at the onset of a cold/flu I get a lot of my symptoms diminishing during that time which, I imagine, must be due to the immune system doing two things.

    Firstly, because it is building a stronger than usual immune response it may be killing off some of the toxins.

    Secondly, it may be that my immune system is focusing on the offending cold/flu virus and not on attacking itself for a while. I'm sure there is some autoimmune issues going on even if non-specific.

    So for after much research on the web and on this forum, I believe I need to get rid of whatever toxins there are in my system and also try to modulate the immune system to stop it attacking my CNS.

    Have you any ideas (natural as doctors not interested in letting me try conventional stuff) what could achieve these things?

    I asked you because you seem quite experienced and knowledgeable and showed an interest in my illness in the first place.

    I hope you have a few ideas.

    If it helps at all, I have recently started on an oxygen supplement and herxed (not strongly but it was definitely a herx) for the first time ever. I have also felt a little better since then. Does this point to what else I should be trying?

    Love Bunchy x

  2. AllWXRider

    AllWXRider New Member

    It would help to know what viruses you have but the tests are expensive. I have Epstein-Barr and cytomegalo viruses, and perhaps others. I got a cold virus from my wife and can't seem to shake it off.

    Olive Leaf extract inhibits the growth of many viruses. Tumeric inhibits EBV.

    Also, Mercury & Lead weaken the immune system. I have high Lead found via a Hair analysis and am chelating it out.

    Lastly, consider hyperbaric oxygen therapy. Do a search on this forum and also on the internet. HBOT chelates out toxic metals and the intense oxygen kills off viruses.

    Normally only red blood cells exchange oxygen and carbon dioxide but at 2 ATM of pressure (15psi), the clear plasma of our blood also carries it. In our capillaries, the red blood cells go through single file. The oxygen is exchanged by osmosis from cell to cell as not every cell is next to a capillary. The plasma leaks past the cell interstice space and gets collected by lymph vessels and goes to lymph nodes and finally back into the heart.

    If the plasma carries the oxygen too, all the cells can have viruses wiped out and the lymph nodes will detoxify as well.

    The Dallas Cowboys have their own HBOT chamber, I thought about volunteering as a water boy just to get rights to use it. I could hand out bottled water while each injured player is treated!!!!
  3. deliarose

    deliarose New Member

    I'm not an expert.. took a quick look at your histoyr.. Phase I seemed like classic viral onset CFS. And some of the later symptoms have been reported by others...

    Here's a thought. There's a guy called Rich Van Konyenburg who has a theory and protocol for treating CFS. Teh first phase is simple, it's natural, it's doable without a doctor, and it involves only non-toxic substances.

    He has posted it on the message board at

    The first phase ... adding methyl donors to your supplememt regime and increasing glutathione .. is very easy to do. (Be sure to stick to the recommended dosage.. I didnt' and paid for it!)

    This is the short version.. and you can do it without a doctor. If this doesn't work, there is a longer, more complicated protocol.

    His theory is that if you raise glutathione, the body can take care of any pathogens. It will also detox any toxins that have accumulated in your body...

    He basically believes that the methylation system is broken in people with CFS, and there's a vicious circle of glutathione suppression.

    This all sounds a bit out there.. but I'm trying it .. and my brain fog seems to be improving.. (but I've only been on it a short time).

    If this interests you, you may want to check out the CFSFMexperimental group where Rich does some work.

    All the best. I understand how difficult it can be dealing with this problem in teh UK.

  4. deliarose

    deliarose New Member

    you may want to do a search for the posts of people who say they have recovered from CFS.

    The ones i know of: MATN/ Elsa/Stormyskye/Rich Carson -- moderator.

    This will give you a sense of what worked for others. I kept a Word document with all of their posts, and then tried to see what the common denominators were.

    Food was one. Treating stealth pathogens was another.

    If you check out my posts, you'll see I did Transfer FActor. My doc also recommended glutathione, but I don't think my body was able to really "use it" until I stumbled on Rich Van Konyenburg's theory and added in the methyl donors in the form of : Folapro, Intrinsic B12 and Biotin's sublingual B12.

  5. deliarose

    deliarose New Member

    you have to go carefully with the glutathione. Too much can mobilise too many toxins and make you sick.

  6. cherylsue

    cherylsue Member

    In the ProHealth library site do a search for "De Meirleir." Read the 8/26/06 article carefully, and determine which CFS Group profile you fit under.

    Do you have an underlying viral infection? Is it bacterial? Do you have pain?

    If you figure you have an underlying viral infection, you can have your doctor prescribe Nexavir gel from a Village Compounding pharmacy in Texas. According to Dr. Cheney, it is the most potent antiviral around.

    Although it does smell, there are no side effects. It has helped others, and it may be helping my viral issues.

    However, if you don't live in the United States, I don't know if they ship overseas.

    Good luck.
  7. deliarose

    deliarose New Member

    Bunchy is in teh UK, so she doesn't pay for tests. It shouldn't be too hard to get a GP to run blood tests for common viruses like EBV, CMV, and mebbe even HHV6.

    The trick is to look at the IGG readings as opposed to the IGM.. as per Jose Montoya/Stanford.

    Bunchy: I tested positive for previous EBV and CMV infection .. my infectious disease doc assumed I had a chronic or reactivated infection and treated with OLE and Transfer Factor.

    I started improving in a couple of days.. esp. with respect to the brain fog... But it did wipe me out phsyically.. made me more tired for a while.

    Eventually that tiredness wore off..

  8. Catseye

    Catseye Member

    For modulating the immune system, I searched and came up with several supplements that are supposed to shift the th2 overactive part of the immune system to th1. The th2 overactive means the RNase-L is running around eating messenger RNA of viruses AND our own messenger RNA, thereby disrupting protein synthesis. And considering the liver is home to most of the protein synthesis in our bodies, it's functions are inhibited causing all kinds of problems.

    So these are the things I've found that shift th2 to th1, which is what we want:

    transfer factor
    deer antler velvet - I'm using
    IP6 - I'm using
    colostrum - used, but sneezed from diary allergy
    beta glucan
    probiotics - I'm using
    chlorella (also for heavy metals, esp mercury) - I'm using
    pine bark extract is also pycnogenol (same chemicals) - I'm using, you could also use grapeseed extract, much cheaper
    glutathione - I'm using NAC to help my body make this

    Another thing that bothers the CNS in cfs patients is elevated homocysteine levels. TMG (trimethylglycine) is from plant and animal sources and is used in the conversion of homocysteine to methionine. It lowers homocysteine levels, helps protect the liver and raises SAMe levels. And make sure you are getting B vitamins. I take about 1000 mg of TMG everyday.

    good luck!

  9. Bunchy

    Bunchy New Member

    I'll get back to you all tomorrow - I crashed really hard today so not up to writing tonight - really appreciate all your input though :)

    Love Bunchy x
  10. Slayadragon

    Slayadragon New Member

    When you first wrote your post, I was thinking about the idea of chemical toxicity, since your symptoms didn't seem to be consistent with straight CFS or FM or any other disease I'd ever heard of.

    This was just a random guess though. And it sounded like you well may have a viral component too.

    I know almost nothing about chemical toxicity and hope you can find more info through research. There may be people on the board who can offer you advice too, if you put a headline under that topic.

    From what I've heard, the following OTC remedies seem to be most helpful for detoxing:

    * Glutathione. A common way to get glutathione is from undenatured whey protein. (I use ImmunoPro Rx; this and other brands are listed in the store section of this board.) Some people report that they can take only a tiny bit of this, although I have yet to figure out whether those people are the ones who have the most neeed for detoxification. Some people (Delia is one) also use a product called liposomal glutathione, although I believe this is prescription. I found the undenatured whey protein to be more helpful.

    * Juicing. This was surprising to me, but juicing seems to be very useful with regards to detoxing, especially if it's done with fasting. (A product like UltraClear can be added for nutrition, and maybe brown rice if hunger is an issue.) There's a thread on this topic permanently at the top of this board. Some produce items (cilantro and beets are two) are supposed to be especially good at detoxing.

    * Some herbs have detox capacity. One of these is licorice. Other people are more knowledgeable about this topic than I.

    * Vitamin C. My doctor states that as much as my bowels can tolerate is helpful both for pathogens and toxins.

    If you do try doing detoxification, I'd suggest going very very very slowly at the beginning, until you find out what you can tolerate. If this really is an issue for you, you could get really sick if you went too fast.

    I'm not sure what to suggest re the viruses. Someone recommended Nexavir, but that's a prescription item in the U.S., and I'm not sure it's available in the UK at all. I'm using antiviral herpes-family drugs, but they're quite experimental. Some herbs or natural remedies might be useful.

    I would guess that there are a good number of Traditional Chinese Medicine doctors in England.....and, moreoever, that they speak English (since most would be from Hong Kong). If so, that might be something to pursue. Conceivably they could be very helpful with detoxification, and maybe at least a little helpful with viral problems. (I'm currently seeing a TCM doctor to help to support my system with regard to the AV drug treatment, and I think it's been useful.)

    Again, my expertise in this topic is quite limited. I really have no idea if toxins are your problem, and am not sure what the best path for you to go if they indeed are. However, since you seem to be at an impasse regarding treating your illness in general, it could be worth at least investigating.

    Good luck and please keep us informed.

    Best, Lisa

    [This Message was Edited on 03/02/2007]
  11. Slayadragon

    Slayadragon New Member

    It looks like you should read the post on Alpha Lipoic Acid (ALA) currently at the top of the board too.

    Best, Lisa

  12. monicaz49

    monicaz49 New Member

    i agree! many of my symptoms do in fact ease up when im sick. But i get very sick with the stomach flu. :(
  13. Slayadragon

    Slayadragon New Member

  14. Bunchy

    Bunchy New Member

    Thanks for bumping my post - I have tried so many useless supplements I am all out of money and patience with it all.

    The only things I am taking now are:

    Milk Thistle
    N acetyl cysteine for glutathione
    An oxygen supplement with trace minerals in it

    I give up on the rest...sigh

    Thanks to all, anyway. I hope you all do better than me..LOL!

    Love Bunchy x
  15. Slayadragon

    Slayadragon New Member

    Sometimes we've just got to put trying to get better aside for a while and get on with our lives, I think.

    I did that for a great number of years, thinking that I never would improve.

    Now I'm pretty obsessed with getting better, and hopefully it will work. If it doesn't, I will stop thinking about it (much) as well.

    Report back with regard to how you're doing if you feel like it, though.

    Best, Lisa

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