2nd apptment with Brewer/Infectious Disease spclist

Discussion in 'Fibromyalgia Main Forum' started by deliarose, Jan 23, 2007.

  1. deliarose

    deliarose New Member

    Dunno if this is of interest to anyone, but since Brewer seems to be one of handful of docs who have embraced the idea that CFS is caused by stealth viruses, I thought I would post on my 2nd visit with him.

    So long story short. I went to see him in August of 06 after 10+ years of CFS which finally forced me to give up work.

    He put me on transfer factor, plus supps, plus glutathione.

    Went back today for 2nd visit. I am much improved. Fatigue not a problem. Cognitive function returning.

    I suggested and he agreed, to add Valtrex to the mix. I had tried this previously .. but under another doc ...and only for 6 weeks. It seemed to make a dent in the brain fog.

    So we're adding 2 grams of Valtrex a day to the 3 caps of the TF, Immune Care 64.

    We'll give it a month to see if it's working, then I'm going to increase the TF to 4 caps a day.

    I've tested positive for prior EBV infection and Valtrex is supposed to be effective against this.

    As others have posted, anti-virals and TFs should be synergistic, because the anti-virals prevent the virus replicating. The TF trains your body to recognise and kill the virus.

    Two other things I thought were interesting: it seems like he has recently added Vit D and VegEPA to the list of supps he is recommending to patients.

    Vit D: seems like the recent study showing this vit wards off MS really hit home with him. He said HHV6 is implicated in the origin of MS, and he certainly believes it's a trigger in a lot of CFS cases.

    The assumption seems to be that Vit D might be immune boosting to some point. This is not new. Not sure why he is only now acting on this, but anyway he has tested a bunch of his patients (about nine) for Vit D levels.

    All were low, some strikingly. He Rxed them 50,000 IUs a week for a while and then recommended they take the over the counter supp daily. The aim is to get their Vit D into normal range. Target is about 50 ng/ml, he said.

    That's the same target set by the Vitamin D council.

    VegEPA: this is a fatty acid supplement. Seems like one of his long-term CFS patients had some successs with this product after using regular Omega 3 supps for years with no effect.

    I think he's interested enough that he's recommending it to other patients. Also, the British researcher who helped formulate it has a track record in CFS research and has published a lot.. which seems to weigh with Brewer.

    Actually, I used this supp last year, cos my mother in England had read about it. It did make some difference at the margins.. but this was pre-anti-virals, and it didn't make enough of a difference on its own.. so I kind of forgot about it.

    But I think I will add it back in. To my mind, the British researcher .. Basant K. Puri and Patricia Kane seem to be saying much the same thing..so there is probably something in this theory about fixing the membrane of brain cells.

    Brewer says Immunity Today is going to distribute the product here in the US. (I do not sell this product ...or even particularly endorse it.. I have no commercial interest... blah, blah, blah.)

    Anyway, I've gone on far too long, but what all of this tells me is that even for docs like Brewer who have been treating this condition for years, their protocols are still evolving.

    Seems to be a matter of trial and error.. the patient's as much as the doc's.

    Brewer seems to think I could be over this in a year but certainly less than 2! Not sure why he's so optimistic, since we don't have any real good test results to go on.

    But I feel that's about right. I just hope there's no other shoe to drop.

    Delia
  2. deliarose

    deliarose New Member

    I do wonder about using a pharmaceutical drug. I prefer to use natural stuff where poss. Is TF natural? I dunno.

    I s'pose my thinking is that I've screwed up my body for the last 10 years, so now I should rebuild it naturally...without the aid of pharmacological agents like Valtrex.

    Of course, I'm out of work, almost out of money, and my career is a blurry image in the rear view mirror, so mebbe I shdl accept all the help I can get, and get on with it.

    God, it sucks to be on the cutting edge of medicine.

    Still, I shouldn't complain. I'm recovering, and six months ago, I didn't think that was possible.

    Cheers
    Deali
  3. greeneyeslk

    greeneyeslk New Member

  4. LISALOO

    LISALOO New Member

    Thanks for the updates. I may see this doctor. Did you have a high EBV or anything else viral? I don't, so I don't know If I would get anything from seeing him.
  5. Slayadragon

    Slayadragon New Member

    Wow, fatigue not a problem? Is that really true? How strong was your fatigue before that?

    Does he think toxins are a big problem for you? Or is that not his area?

    I'm of the tentative opinion that it's almost impossible for CFS patients (except kids) to get wholly better without AV's, and that even with the lighter AV's (Valtrex or Famvir) you've got to be on them for a long time (12-18 months) if you're going to do more than just improve some.

    Of course, I also think that you've got to scrupulously address the fundamentals (e.g. the stuff in Teitelbaum's book) too. Otherwise progress will be much slower, I believe.

    Probably I've made that view clear enough on the board already though. It will be interesting to see how things turn out for different people.

    I'd rather be on the cutting edge of medicine than stuck perpetually in its dark ages, which is what I thought was going to happen to me.

    I will look into that Vitamin D and Veg EPA.

    Thanks you for sharing!

  6. deliarose

    deliarose New Member

    Lisaloo: as i mentioned, i test positive for prior EBV infection, not sure about the titers, but nothing current.

    Like most of the population.

    LisaP: I don't suffer with much or any fatigue.. except a sleep hangover when I change meds, or some new med knocks me out.

    I used to have horrible fatigue. Not sure if i have as much energy as I once did, but hoping that's just a matter of time.

    Toxins: Well glutathione is a big part of his protocol, but he will not talk about heavy metals. He's v. conservative, and I don't think there's any real good scientific data on chelation.

    But he did admit some of his patients were chelating.

    Delia