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Hi all
Yes am still alive! Just still dont have a landline or internet access in my new home…..7 weeks now!!
I have just returned from seeing a highly experienced AP doc in Victoria (Oz) and the naturopath she works with. What a journey of discovery! They both are a little doubtful about my PRA diagnosis, believe I have at least 2 more pathogens to deal with (possibly Lyme issues!!!!). Anyway, both believe wholeheartedly in leaky gut – no question of it -n and that the combination of de-stressing (meditation/prayer), abx AND a diet that's specific to each of our bodies to heal our gut is the 3-way combination that works best. I am almost running out of time on this public computer but will post in more detail when I finally get back on air.
Miss you all!!!!!!!! Lynnie
Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)Lynnie!
Your new docs sound fabulous and can't wait to hear more on your progress as times passes. What you say about your dx possibly being Lyme (I think because you live down under) fascinated me, because when I first got Lyme, I did a ton of research to figure out my symptoms and kept pulling up websites on palindromic RA, over and over. Stage 2 of Lyme is pretty identical to PRA when it primarily affects the joints, waxing and waning, as well as migrating all over. The third stage, of course, being more akin to RA proper and getting more fixed.
Will your docs be testing you for this or not bothering and just commencing treatment?
Great to see your smiling face posted back here on the BB! Looking forward to your full return, once you get your internet sorted. Your gentle presence and wisdom has been missed. 😉
Peace, Maz
Hey Lynn, glad to hear your visit went well. Do say more about the diagnosis, for obvious reason this is hugely relevant to me! 😀
Maz, you mentioned this about the migratory nature of Lyme. When I first saw my RA doctor, he specifically said two things when I mentioned Lyme. First he said my symptoms were not really like Lyme, then he said Lyme patients do not have positive CCP tests. After that he said there was no reason to look anymore for my diagnosis as it was clear we were “looking a horse in the face.” Everything you have said pretty much negates that. I don't see him anymore (thank goodness), and my new doctor things completely differently, but he is not interested in testing me for pathogens. He thinks they are just too hard to pin down, so treating is the thing to do. I wonder at times, but worry that nothing would be found to treat.
Anyway, glad to hear from you, Lynn, and looking forward to more details!
[user=45]Tiff[/user] wrote:
Maz, you mentioned this about the migratory nature of Lyme. When I first saw my RA doctor, he specifically said two things when I mentioned Lyme. First he said my symptoms were not really like Lyme, then he said Lyme patients do not have positive CCP tests. After that he said there was no reason to look anymore for my diagnosis as it was clear we were “looking a horse in the face.” Everything you have said pretty much negates that. I don't see him anymore (thank goodness), and my new doctor things completely differently, but he is not interested in testing me for pathogens. He thinks they are just too hard to pin down, so treating is the thing to do. I wonder at times, but worry that nothing would be found to treat.
Hi Tiff,
Unfortunately, there are two currently existing schools of thought on Lyme. The IDSA (infectious diseases society of america) stating there is no such thing as chronic Lyme and only an untreatable post-Lyme syndrome. They say that if Lyme persists after the standard treatment of 3 to 4 weeks of doxy, it must be something else. If that's the case, then there are inordinate numbers of folk walking around with “something else” that came along right upon the heels of their Lyme infection.
Recent studies done on mice actually discredits this “belief,” as all study mice were found to have plenty of spirochetes still having a party in their tissues in spite of negative blood serum tests after standard treatment. Of course, these are mice, not humans, but I guess they use lab mice for these studies for a reason. Seems to me that this organism is just very adapative, much like the mycoplasma, and escapes further afield into the body and changing form after bombardment with a short course of treatment.
Then, there is the ILADs point of view (international Lyme and associated diseases society) that claims chronic Lyme does indeed exist and many patients are suffering needlessly, being diagnosed with all sorts of serious disorders and only getting sicker on the standard immunosuppressive drugs doled out. Patti and I were pretty fortunate in that we were aware of our initial Lyme infection…many aren't and many don't manifest chronic symptoms until years later.
So, who is right? The so-called IDSA experts say one thing, but the chronic Lyme patients are the ones living it and would say otherwise.
My LLMD did a talk at New Haven Uni last summer on the topic of Lyme Disease and its conncection with “autoimmune diseases.” In the talk, he asked, “So, is it Lyme or an autoimmune disease?” Then answers, “Actually, it's both.” He then goes on to discuss how Lyme is a stealth pathogen that mutates and is able to trick the immune system (much like mycoplasma) by molecular mimickry. Lyme has now been dubbed “the new great imitator” much as syphillis once was also dubbed, because it has the ability to mimic all kinds of diseases and has a specific proclivity for collagen rich tissues throughout the entire body. Also, like syphillis, it is a spirochete and it is widely accepted that syphillis requires open-ended antibiotic treatment. No one really knows why Lyme manifests in so many forms, triggering RA or MS or Lupus or JRA or FM or CFS or even Scleroderma in individuals….this may depend partly on the roles of genetics, strain of Bb, prior pathogen/environmental toxin load, etc., etc.
Tiff – you might find this article from Lyme Info interesting. If you scroll down to page 18, “Musculoskeletal System”, a study by Alan Steere, published in the New England Journal of Medicine, states that the musculoskeletal pain of Lyme is generally migratory in the joints, tendons, bone, bursa lasting anywhere between a few hours to days in any given location. As the disease enters chronicity, it becomes more fixed. As far as I can tell from this description and my own experience, it sounds pretty akin to PRA. That's not to say that all PRA cases are Lyme-related, but they could well be.
http://www.lymeinfo.net/medical/LDSymptoms.pdf
When I got my strong positive anti-CCP tests back from my LLMD, I asked him if I could still have Lyme, if this test is so specific to rheumatoid arthritis. He gave me a very affirmative, “Absolutely.” He also added that this didn't mean he was saying that I didn't have RA. What that meant is that my RA was triggered by Lyme Disease and that once the infection was under control, my RA would follow suit and remit. After a little over a year on his treatments, I can't argue that. 😉
It seems lots of patients get all kinds of convoluted info from their rheumies…like once you test positive for RF or anti-CCP, these numbers are irrelevant. I think quite a few of us are proving this to be wrong….Donner's anti-CCP has come down dramatically in under a year and my RF has decreased from mid-500s down to 44. I think part of the issue here is that rheumies, in general, just don't expect to see improvements in these numbers, because they're just using masking drugs and so these tests are only used for initial diagnostic purposes or to later confirm worsening.
Sounds like your original rheumy :sick: may have had his literature direct from the IDSA brochure! Your current rheumy may well be right that pathogens are hard to track down and it's more about focusing on antimicrobial treatment. Most LLMDs prefer not to rely on tests for Lyme, because they're so inadequate….they treat on patient history and clinical presentation alone and a positive test is really just a bonus, as just as many people are seronegative for Lyme.
I guess it really depends in which camp the doctor is sitting….ie. having a belief in infectious causes or not for rheumatoid disease.
Hope the link above is helpful in some way. Lynnie might find it interesting, too?
Peace, Maz
PS After clicking on the link above, you have to hit “Symptoms” to be taking to the pdf I was referring to. 😉
Maz,I?ve been following this debate a bit myself, but you sure have become an expert. When I had my thyroid out, I got that way about it. Amazing how divided docs are on how to treat thyroid disease. If I had followed up on the Hashi?s portion of my problem (no doc cared about that when they were following the cancer), I would have scared myself silly with the AI side of my problem.
I can?t imagine why they would be so convinced a short course of ABx would cure Lyme. So simplistic. Seems like they are just being dismissive. So often frustration leads to that kind of result with doctors.
Yes, your description from the site of early Lyme is what I am living. I have no recollection of a tick bite and no clear recollection of any flu-like symptoms or rash (I know the target rash doesn?t always happen). In fact, I lack any other symptoms really. Even my skin has cleared up. My RA is still, even now, not typical, and except for the CCP, I don?t think any doctor would be convinced that RA is what I have. The symptoms list on the link you gave is so vast as to be almost useless. Unless they can nail down a way to diagnose that is more accurate, how can they make progress?
What I am trying to figure out is if there is really a disease called RA (or Lupus or anything else for that matter) that IS idiopathic and autoimmune. Is there EVER a real reason to use immunosuppressive drugs and ?give up? on getting well? Last year I almost halved my CCP on minocycline (194 to 94), and I took my RF back square into the normal range. I believe it worked. Why did it STOP? I have tried everything ? yeast, diet, etc. Now I am trying MP, but how to tell if I am making progress? And what do I do if this summer when I have x-rays and labs done again I have lost a lot of ground? How patient should I be?
I know you can?t answer all of that. I?m just frustrated and getting SO TIRED of pain and fear! Every time it starts some place I wonder if this is the time it will STAY there. So far on MP (I am on Benicar and only taking 25mg mino every 48 hours ? a HUGE drop for me!) the pain has been more frequent but no more intense (still about weekly it is very bad in some places). But more spots are hurting at one time, and even some symmetry is happening (maybe), but any given spot still hurts for a short time (about 48 hours). It just rolls around in me, like a swarm of bees sometimes landing in one place and trying to kill me, but sometimes just floating mildly. Very horrible. Such a nightmare. I?m taking more pain meds, too. Sometimes they help, but never very much, and they don?t make me functional, just more comfortable. Then often I have a good day, and more often just good hours in a day (around noon to 7pm or so). Life goes on, and most people don?t have any idea what is happening to me, but they don?t seem me much either. My life is a small circle. A very good circle (my family is everything to me), but small all the same.
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When I was on straight AP I didn't much care why it worked. But when I changed protocols and started herxing like a 48 hour pendulum, on, off, on, off, I became convinced that my disease was surely microbial. I just can't think of any better explanation for that kind of herxing. When we treated Cricket's asthma with my doxy (later MP) we got 48 hour herxing. We even experiemented with a wee small 25mg of Mino on our ADD aflicted daughter and we got, guess what, a monstrous ADD herx. Glad we did that on a weekend. So I have become extremely cynical about idiopathic autoimmune diseases. I think doctors should paint their faces, strip to a loin cloth and dance about us with rattlles and smoking torches for all their useless knowledge about autoimmunity. Not that I feel strongly about that.
I hope you are right, John. I'm counting on it. I just am such a doubting Thomas. Won't you be happy when I finally am convinced? 😛
I've painted a pretty miserable picture. Truth is that I have been doing pretty well despite the coming and going pains. I'm managing, and that includes the changes needed for MP, which have fallen into place in a miraculous way. I have plenty of hope, and I am still thankful for this site and all the people who are so determined and postive!
Tiff I know this is a very important issue for you. I promise I will give as much detail as I can on the whole thing once I get back onto my own internet connection. In the meantime, I will try and journal the things so far that I remember being told. It was such a whirlwind…..so much info to take in that I probably wont remember it all. However, share I will. There may be some issue that are more specific to your puzzling over your PRA diagnosis, in which case I'll PM or email you. Take care. Be in touch soon. Lynnie
Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)Thanks Lynn, that will be great! Hope you get back online soon. I know how inconvenient that can be! Good luck!
[user=45]Tiff[/user] wrote:
Is there EVER a real reason to use immunosuppressive drugs and ?give up? on getting well? Last year I almost halved my CCP on minocycline (194 to 94), and I took my RF back square into the normal range. I believe it worked. Why did it STOP? I have tried everything ? yeast, diet, etc. Now I am trying MP, but how to tell if I am making progress? And what do I do if this summer when I have x-rays and labs done again I have lost a lot of ground? How patient should I be?Hi Tiff,
I know you're going through a really tough time and I also know I'd only be preaching to the choir, as you're already so well versed in Brown's philosophies…so I won't get into the “when to give up” thing, because I went through that every day in the beginning and even now still get some backwards days where I feel weak and frightened. It's natural to doubt this therapy, because the nature of it is that it is no overnight sensation. It's hard to be patient and I can't claim to be a paragon of patience, either. I think the only thing that kept me going through the worst times was the fact that I'm (a) stubborn as a mule and (b) knew it would have to be a cold day in hell before I went on anything immunosuppressive for what I truly believe to be a 'slow' infection.
So, why has your progress stopped? Well, it may feel that way, but it could just be that you have some coinfection that needs a new abx. If you have any suspicion whatever that it may be chronic Lyme-related, then mino alone isn't going to hack it. Brown, himself, used to change up abx protocols quite frequently, I gather, recognizing that stalling out probably meant there was some other pathogen that was just sticking its neck out when the primary one was temporarily quietened. He suggested strep as a possible villain. In Lyme, any number of coinfections may stall out progress.
You're on MP now, so I know this protocol eventually leads to a combo approach as one works through the stages. It may well be, too, that you're just going through a really bad period of herxing on this new protocol, as well. I'd suggest you post to the experts on the MP board, as they may have suggestions for regulating your dosing to alleviate the worst.
Take heart in knowing you're not alone in stalling out or even losing ground. This past year I've been on so many different protocols it's hard to recall them all at times….but there were definitely ones that I improved on and ones where I felt I lost ground. Although, it was really hard during the latter times to know if I was truly losing ground or just going through periods of massive herxing. It's the long term curve you want to keep yourself attuned to and watching the trend.
You may not be in the mood to read anything right now and I wouldn't blame you one iota…but, thought you or others on this thread may be interested to read this piece, third paragraph down, which I've cut and pasted below the link. I was pretty shocked when I came across it…. Dr Alan MacDonald is a Lyme Literate physician who has found pretty indisputable links between Alzheimer's and Lyme and he states:
http://www.lyme-disease-research-database.com/lyme-disease-symptoms.html
“The disease is frequently misdiagnosed as many other illnesses, such as Multiple Sclerosis, Chronic Fatigue Syndrome (CFS), Epstein-Barr virus and rheumatoid arthritis. Some Lyme experts estimate that up to 50% of patients diagnosed with autoimmune diseases have Lyme?s either as the cause of or as a contributor to their suffering“.
50%!!!!!! That statistic and implications of this is pretty staggering. That would quite literally mean that half of all rheumatoid patients have Lyme (and its coinfections, which include our old friend mycoplasma) as a trigger for their disease. This is not just one guy's opinion…this is the opinion of a number of experts in the field who all feel the same way. I know my LLMD who specialises in the connection of Lyme and “autoimmunity” would probably say the number is higher, in fact. He's often quoted studies to me in which it was found that 100% of MS patients who had their spinal fluid tested all showed evidence of spirochetes. It's a lot to take in and I tend to wonder if this is all just the ravings of a lunatic fringe, as there are so many possible pathogens out there that have all been implicated in our diseases….and then I swing the other way and think…well, weirder things have been suggested.
Anyway….I nearly missed your post, Tiff, and just wanted to get back to you, as you sound at such low ebb, right now. Just wanted to write a few words of support and just try to hang in there and keep fighting. Sometimes storms come in rough and stay for a while, but eventually there is a break in the clouds and the sun starts to peek through again. We're just the ones who happened to get caught up in monsoon season!
Peace, Maz
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