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  • #366109
    John McDonald
    Participant

    Suzanne – Someone that I haven’t spoken to for ages inquired about you and your sweet girl. So I popped over to see if you were still about. Your post is fantastic, just brilliant. I am so happy. All that physical activity! Fantastic.

    I am doing great as well, BTW. I am completely without symptoms of RA or anything like it and have been for years now. I haven’t taken any meds or abx for a few years now.

    -John McDonald

    #325382
    John McDonald
    Participant

    I am charging forward. I used to charge forward before I acquired RA. I was like that drop of water that you use to test the heat of a skillet just before cooking the pancakes. I was skittering and moving fast. I slowed down in the decade before getting RA and I assumed it was just aging. I didn't process information quite as fast and I figured it was time to make room for the young people. But I seem to be back, finally, even while still on some antibiotics. But let's see if I can get some traction and actually change some stuff.  😎

    Meanwhile I have turned off most of the email alerts from all of the bulletin boards so that I can concentrate. If y'all want me for interrogations please send a PM. That will get through.

    I sure do like the support and family that I get here.

    -john

     

    #325375
    John McDonald
    Participant

    Thanks all for asking and thank you JB for the PM bringing it to my attention. In quick recap I am finished with my MP vacation. I am back on all 3 abx at the same doses that were so difficult for me 6 or 8 months ago except now they are not so difficult at all. I seem to have my mind and energy back. Normally I would ramp up my antibiotics and restart the MP herxing except…. I badly want to rework my career so I have decided to hold exactly where I am on all 3 abx. I reason that my body with all this abx on board will be hostile to microbes so I will not lose ground and may even gain a bit more. I really feel sharp and entrepreneurial again and very energetic. I have thoroughly reworked and am still reworking my website velcro boot and crutches I said “When I jumped from the helicopter my skis crossed and I tumbled down the mountain”. “Really” (with big eyes)? “No, actually we were in Thailand and I tried my hand at kick boxing.” I had more. I kept going about rock climbing in Switzerland and the Husband who came home too soon and such until they laughed and gave up. But it was a trip and fall. 

    I am nearby, insanely busy as accurately reported and having fun. PM me please if anyone needs anything.

    Wonderful friends, thank you.

    -john
    (corrected spelling and typos twice now. Sigh!)

    #322814
    John McDonald
    Participant

    I have heard of things like this. The weirdest I have heard is from a woman with RA who lives near me. She and her daughter and a number of other women all got nasty food poisoning from tainted chicken at a bridal or baby shower. All suffered from upset and vomiting. But my friend also got remission from her RA for about a month.

    One possible explanation is that her immune system stopped attacking the joint mycoplasmas in order to turn to a more urgent crisis from the food borne bacteria. True? Who knows?

    We take probiotics to prevent yeast infection because we believe we have depleted our intestinal fauna with antibiotics. But the probiotics are widely sold not for that use, but because they are alledged to enhance immune response somehow. Some scientists speculate that the supposed “health advantages” from probiotics work the same way as the toxic chicken may have, that people feel better on probiotics because their macrophages are all diverted to attack the probiotics and therefore cannot cause inflammation elsewhere. It sounds plausible.

    #322382
    John McDonald
    Participant

    “if our immune systems were weaker, wouldn't we be sick all the time with every cold, flu bug, etc that came around?”

    I sort of agree except for this imponderable; I've met CFS and Lyme patients who complained that since they got CFS or Lyme, they never get colds or flu. They attributed it to a mangled immune system. I suppose our runny noses and fevers and such are an immune response to colds and flu so in that respect their claim has some merit. But I have since wondered what happens to us if we get cold or flu viruses and somehow do not manage an immune response? I find this, well,  imponderable. I don't know what to make of it. Would a cold or flu kill you if you couldn't mount an immune response? I don't know. I don't know what to make of the claim.

    #317766
    John McDonald
    Participant

    I slipped up on my probiotics and diet during a vacation while driving in Oregon and I did indeed get the yeasties. After that for a couple of weeks every carb or sugar that I ate my bowels tried to turn into beer; most unpleasant. Doc fixed me with a single dose of diflucan. After 2 weeks a struggle with supplements and careful diet I wasn't curing the yeast, but within an hour of taking the diflucan I had considerable relief and was all better within a day or so. But it was a shock to have my RA surge back when I had that infection.

    Marshall believes as I do now that our disease is caused by intra-cellular bacteria; that these bugs infect our white blood cells, especially the phagocytes. He claims that is why our gut cannot fight off yeast (or anything else), because our white cell defenders are all compromised while providing host to these bacteria. He claimed that at some point of treatment we should need probiotics anymore; that our healthy macrophages will successfully beat the yeast at that time. My gut improved amazingly on the early MP. Before that, each year I was crossing off foods that I could no longer eat comfortably, but well into phase-2 (two antibiotic combo) I found I could resume eating many of these foods again. So I tried doing without probiotics as well and he was right, I don't need them anymore.

    Tbird – At one time, when I started, there were only 3 phases on the MP. First one antibiotic, then two in combination and then 3 in combination. When I master the 3 abx combo I will rotate one of these out for another previously unused antibiotic until nothing I can do will elicit any kind of herx any more. The idea is that if I cannot elicit a herx no matter what I do, then my body may then be free of microbes and free of disease. The MP more or less ends at that point. However the endgame is more complicated for a very few people who begin to struggle with herxing even without antibiotics. One reasonable but unconfirmed theory is that  when the macrophages become well they start making antimicrobial peptides again. Those are a natural body made antibiotic that sick macrophages probably can no longer make. But that makes an additional antibiotic for the phase-3 mix over which we have no dosing control. These people also recover after this sort of 4th phase but it extends things out some more for them. I am not there yet so I don't know if I will be in that number or not.

    -john

    #317763
    John McDonald
    Participant

    I was and am very happy with my AP results but I decided to try the MP for several reasons.

    1. My RA didn't clear completely on AP, very substantially but not completely. If it is microbial, then why can't we kill of the rest of the buggers? Same idea for those of us who have a setback after 5 or 7 years. I wanted to see if I could take it further.[/*:1jzp8sq8]
    2. The MP science, the disease model, makes more sense to me than any other I have heard for RA. That doesn't mean that it is right, but the story is cogent and remarkably complete and the model seems to have remarkable predictive power. In physics at least, a model that predicts well is a good model, however complete or incomplete, until a better one comes along. MP phases 1 & 2 do to us about what they claim they will.[/*:1jzp8sq8]
    3. I got a systemic yeast infection at about 14 months and that made my RA symptoms temporarily surge. That took me back to item one above.[/*:1jzp8sq8]
    4. This is embarassing, but I couldn't resist the experiment. It turned out to be successful for me. But looking back, what made me want to be my own guinea pig? There was only maybe two others on the MP for RA at that time, now there are many. But however I rationalized it, I was just plain intrigued and curious.

    [/*]
    My RA is substantially gone now, much more so than when I was on AP alone. This is deeper than remission and I am starting to bandy the 'cured' word just a bit. But I am herxing in other tissues now. That makes sense if RA is a microbial infection. Why wouldn't other tissues also be infected? So now I am sticking it out on the MP to clean up these other areas. MP phases 1 &2 were very clear wins for me. MP phase-3 (3 antibiotics in combination with Benicar) has been hard and I wonder when it will ever be over; part of my motivation for the vacation.

    -john

    #322108
    John McDonald
    Participant

    Maria – Most SD (scleroderma) patients who post here are on the Harvard Protocol pioneered by Dr. T at Beth Israel hospital. He uses twice daily dosing and generally encourages patients to dose on an empty stomach. There aren't so many SD patients and the disease is pretty threatening so not so many docs have experimented with dosing. If it worked for Dr. T then that is what they will do. Dr. T may or may not believe that the disease is microbial. He never really has taken a position on that. If it is microbial then it isn't terribly different from the other rheumatic diseases and it will respond well to MWF or alternate day dosing. If it truly is an idiopathic, auto-immune disease and if the principle action of Minocycline is anti-inflammatory and/or anti-collagenase then perhaps twice daily dosing is superior. Unfortunately for you, you have to read all you can and then you and doc make your best guess.

    However, that said, I have been watching this bulletin board for around 4-1/2 years now. The vast majority of patients, whatever they have, seem to prosper whether or not they dose daily or dose on alternate days. That is, whatever choice you make between the two seems to be a good choice compared to not taking minocycline. So do make up your (and doc's) mind, but don't panic that you won't get it just right whilst you are learning.

    Do read both of Henry Scammell's books, the one about arthritis as well as the one about scleroderma. It will be hard for you to get too much information. Also, check out Amy Proal's introduction to the Marshall Protocol at this location: http://bacteriality.com/2008/05/07/mpintro/. The protocol is controversial, or at least Marshall is, but it is chock full of interesting science and it will inform your questions and your quest.

    Keep doing what you are doing, staying informed and active in your treatment, and you will do well. I am certain of it.

    Regards,

    -john

    #322377
    John McDonald
    Participant

    Joe said:

    So why does half the population have these infectious agents but no signs of disease?  Assuming I am one, it means my immune system is smart enough to ignore these benign agents, while yours mounts a sustained attack wreaking havoc with normal bodily functions while unable to eliminate the pathogen.  Maybe if the medical community called it “dysfunctional immunity” rather than “autoimmune” it would be easier to accept there is an inherent flaw in your immune system.  I'm not saying an “infectious” agent is not the cause but rather how the immune system responds to this agent. 

    Why does 1/3 of the earth's human population carry the tuberculosis microbe (wikipedia) but isn't symptomatic? A follow on to the human genome project is the Human Microbiome Project. They believe over at the NIH and elsewhere that the cells in our microbiota is something like 10 times larger than our own self cell count. They claim (Hmmm!) that most of these microbes are previously unknown to science and have not and can not be cultured in vitro. One researcher is quoted in a WSJ article :

    [align=left]The diversity is more than anyone expected. Dr. Segre, who specializes in the study of the skin, found one set of microbial communities thriving in the bend of the typical elbow and an entirely different set of colonies on the average forearm. In all, she identified 113 different kinds of bacteria living in concentrations of about 10,000 per square centimeter on the surface and, just beneath the skin, in densities of one million microbes per square centimeter, she reported last May.[/align]

    [align=left]So my point is that medicine is way behind science in understanding microbiota and science is admitting that they have just discovered how much they don't know. I believe when the researchers dig through this new biota they will pretty much eliminate the silly auto-immune theories. Seriously, the human immune system is marvelous and if we really did attack self then I think in a day or so we would be a puddle of fluid and cytokines on the floor where we once stood. Think how quickly a corpse decays when the immune system ultimately fails. This inflammation in our disease is a normal immune response to microbial invasion. This war between microbes and animals has been going on for long, long time, and as a result, the microbes are good, danged good. But so are our immune systems. As long as we don't deliberately disable them with TnF blockers and steroids and possibly vitamin D (given Marshall's work) then we may at least hold even. If we help ourselves out a bit with antibiotics that target microbial protein manufacturing then we get a leg up on the critters.[/align]
    [align=left]Why doesn't everyone get RA? Must be the peculiar mix of microbes in their biota along with whatever they might be ingesting or doing or stressing that might disable their immune response.[/align]
    [align=left]-john[/align]

    #322103
    John McDonald
    Participant

    Generic Minocycline is actually quite good. There have been a few patients who reported not responding to generic Mino but it is rare for that to happen. You are mostly likely just fine on generic.:)

    #317760
    John McDonald
    Participant

    On Dec. 1st I resumed the MP phase-3 right where I left off in September. My AP/MP vacation is over. Oddly enough, I had more obvious herxing when I was on only 2 of the 3 antibiotics. I didn't have much herxing on those wee doses but my hands had just a noticeable amount of arthritis. That vanished when I started all 3 abx. It is weird, almost as though the abx can only target one set of microbes in one organ at a time. I am not yet experiencing much neuro herxing again (yet) but maybe I will not until I ramp up a bit. I think I had very nearly mastered this dose before I took my break. Also, I got a great deal of sun and exercise during my break so I suspect that my 25D levels have risen. In the MP lore that is supposed to slow microbial killing. I was asked about just how I ramped down for my break.

    Sept 1          Starting break – ramped Z & C to

    #322009
    John McDonald
    Participant

    Froggy,

    Best way to test for herx vs. other is to suspend antibiotics for enough time to clear it from the body, wait a bit, and then resume. A herx should have a time relationship with your dosing. Mino is substantially gone in 48 hours and pretty much completely gone in 72 hours.

    The half life of mino is about 14 hours give or take a couple hours.

    So 14 hours, half left

    24 hours, half of that left, or 1/4

    36 hours, half of that left or 1/8 of the dose

    48 hours, 1/16 left and so on.

    -john

    #320618
    John McDonald
    Participant

    Busier than a 1 legged – how does that go? I have had some other volunteer activity together with extra work and travel. Busy. Thanks. Some day soon I should re-emerge. Today I am just back from a sodden week in Portland, Oregon for a conference and trade-show. I feared the worst because of the economy but it was a good trade-show.

    -john

    #319055
    John McDonald
    Participant

    Mumof3 – know one knows for sure what causes scleroderma yet and medicine doesn't have an excellent track record for treating idiopathic diseases. Here at the Road Back members are sort of split over whether we think it is a bacterial disease or some sort of environmental toxin (Richie) or other mysterious auto-immune disease. The late Dr. Brown thought the disease was the result of occult bacteria; he fingered mycoplasma bacteria.  Dr. S and Dr. F are probably in that school. Dr. T seems to be a fence sitter, not comitting either way. Dr. S seems to be comfortable with IVs, having learned this first hand from the late Brown. Dr. F has given at least one patient an IV but not until months and months after starting. He doesn't seem to be big on IVs. Dr. T seems to far prefer high dose oral antibiotics. Marshall PhD is big on microbial etiology but his protocol doesn't include any IVs.

    I have seen Road Back scleroderma patients treated in all of these ways. The good news is that all seem to improve with time. So the only argument would be about which is faster. I am a huge believer in the microbial etiology. I think that is the most satisfying explanation of herxing. I would favor the MP first, then alternate day dosing next and daily high dosing last. Richie doesn't like the microbial theories and he improved on straight high daily dosing, the so-called Harvard protocol. But we both seem to agree that either method seems to eventually result in improvement. It is all opinions. Want more? Ask about. Of course Richie is wrong…..;)

    But do get yourself on Minocycline in some dosage as soon as possible. Dr. F doesn't usually start people on minocycline right away. He likes to run about a bazillion tests first. So I would vote for Dr. S. There are some docs in the UK that will work with you (are you in the UK?). There was a member in Glasgow and another in Belfast and another in London somewhere. But it seems harder in the UK.

    #318812
    John McDonald
    Participant

    Kimberly, you are on a lot of Doxy and the Nystatin and flucanazole may also elicit a herx. And a herx might well include depression. In your shoes I would consider trying a lower dose of these for a while to see if your spirits re-emerge? It is a thought.

    -john

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