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i just sent her an email mentioning “us” hopefully she gets on board 🙂 though it sounds like shes in alot of pain. 🙁
Poor kid – hope she makes it here, Gord….and so glad to hear you’re okay and sticking around, too. 🙂
yah im still here. doctor and my father are begging me to leave the group and just take the antibiotics and enjoy life. im enjoying life but this place feels like a family sorta. a family of people who get it yah know? i feel great though. i did some pushup training the other day and my shoulders have been mighty sore from it from a lack of physical activity. think i gotta start off a little slower but other than the sore shoulders which is more from using muscles i havnt used in awhile im pretty good. my knees have remained healed and no pain is going back. the burning thing is still there but not even noticable really it comes for a few minutes then leaves. all in all i feel like im a solid track here. dr. bob gave me another 3 month supply of life savers (minocycline) and we now have established i am having a recurrence of arthritis from an h-pylori infection 2 years ago which gave me a super sore back. so it seems something else has infected me and brought the arthritis back. but from the sounds of my symptoms even regressing before i started AP we are confident that this is on its way out. i prolly have antigens still left over in my system from whatever was bugging me. it should be gone hopefully within the next three months for good. but bob says he has heard of cases of reactive arthritis lasting 18 months 😯
@gordbentley wrote:
all in all i feel like im a solid track here. dr. bob gave me another 3 month supply of life savers (minocycline) and we now have established i am having a recurrence of arthritis from an h-pylori infection 2 years ago which gave me a super sore back. so it seems something else has infected me and brought the arthritis back.
Oh my goodness, Gord, I don’t think you mentioned H Pylori before…or I missed it! No wonder you’re showing similar symptoms to Lyme disease!!! 😮 H Pylori is another nasty spirochetal infection, similar to borreliosis, another type of corkscrew-shaped organism…just a different species. Other spirochetal infections include things like oral spirochetes and syphilis. Syphilis was dubbed, “The Great Imitator,” because it could mimic all kinds of diseases – neurological, rheumatological, gastro-intestinal, cardio-vascular, etc? Today, Lyme is recognized as being so similar in how it can mimic or trigger other diseases that it has been dubbed, “The Second Great Imitator.”
H Pylori is not so dissimilar in those genetically pre-disposed to chronic symptoms and has been tied in a good number of studies now to rheumatoid arthritis. So, if you’ve had a past run-in with H Pylori, this would definitely tie in with rheumatic symptoms. Just do a google search on key terms, such as “Rheumatoid Arthritis, Helicobacter Pylori and Clarithromycin.” Studies were done on RA patients over a long study period to assess their improvements in RA while receiving longterm antibiotic treatment.” The results were undeniable! If Bob needs these studies to continue your treatment, they would be easy to dig out. This chronic infection would also account for some of the peripheral neuropathies you’ve been describing…Lyme can do the same thing, as can syphilis.
The trouble is, for treatment of chronic H Pylori, you might find a combination protocol to be of more longterm value. On the official Barry Marshall website, he outlines various antibiotic protocols for H Pylori. This was the Aussie researcher who actually infected himself with H Pylori to demonstrate that stomach ulcers were caused by this infection. He was dissed by his peers as being a fringe researcher, but is now hailed as the discoverer of the cause of stomach ulcers (a small percent of which can also be caused by NSAIDs and other meds).
http://www.helico.com/treat_therapy.html
Treatment usually involves a tetracycline, a macrolide and an azole, like Flagyl or Tinidazole (for the dormant cystic form that can revert back to active spirochetes when abx are stopped), but you’ll see all the various suggested protocols on the above page.
I’m sorry both your doc and you family feel you shouldn’t particpate on an online peer-to-peer forum. I can understand the fears surrounding these diseases and the concerns about misinformation being passed between patients. However, on this forum, although we provide educative resources to one another, we also ask one another to research everything for one’s self and not to take our word for it. Something along these lines is stated in the forum guidelines (above). Patients are the ones experiencing these diseases and, unfortunately, even those closest to us cannot understand what we face or go through on a daily basis, including the depression. Reaching out to others who understand exactly what one is going through can be very healing to the soul and mind. Of course, this isn’t always the case, I know, and everyone is different – some may well go into deeper fear states, but mostly, “knowledge is power,” enabling patients to become partners with their treating physicians in their own health-care, helping to make informed decisions. In fact, if this helps, Tufts Medical School has actually pointed their students to this forum as a valuable resource in an attempt to train physicians in a new way of thinking about patient interactions. This is because, in the past, patients were not as pro-active in self-advocacy as they are today with all the information available for self-education about our conditions. Med Schools are actually beginning to accept that patients will be doing their own research and, in some cases, be very informed about their conditions and the treatments available. Patients have never before in the history of man been as informed about their diseases as they are today and as we’ve sometimes witnessed here, in some cases, patients are even better informed about their diseases than their own physicians who may only see one or two cases of rare rheumatic diseases during their career…and, even then, will shoot patients off to a specialist. There have been some instances when patients have been told “fibs” by their doctors about minocycline, for instance, as patients are being swayed not to use abx therapy, that it causes drug-induced lupus or even real lupus. The truth is that drug-induced lupus is a condition that is statistically very rare and minocycline cannot cause real lupus, at all.
Anyway, I felt it was worth talking about this, because you aren’t the first person here who has been told to “stay off the internet” and “let the doctor do the doctoring.” The bottom line is that most people who wind up here aren’t the kind to not be pro-active in their disease and want to learn about abx therapy as a viable treatment. It is a treatment that is usually regarded as ineffective and sometimes even with disdain by physicians. We’re here to say it IS a viable treatment and it works very well for both mild (as in your case) and severe (as in my case) rheumatic diseases.
All this said, if anyone (and I don’t mean you, Gord) is finding they are obsessing about their disease and finding they are crippled by fear, is it the right thing to do to ignore that? Surely, some form of counseling is needed, not to just shove it under the rug. I dunno…I’m just a patient, myself, so I can’t claim to have all the answers either. 😉
yah when i had h pylori it was not fun at all. couldnt keep food down. my back hurt like the worst thing ever. (worse then the pain im in now but just in the back). maybe i should be tested again? i had to eat nothing but porridge for 3 months as that was all my stomach would keep down, if i ate anything else i had the worse acide reflux on the face of the earth. similar to swallowing gasoline and then chasing it with a match. funny thing is this is when my health went south. i didnt feel right for at least 6 months after i was treated and then i came back life was good and everything. then two years down the road my joint pain symptoms came back. however i dont think i have RA. my symptoms just dont fit. i dont even get joint morning stiffness. never have. i just get aches and pains here and there. and the back pain comes back every once in a while. i even had it a year before this started happening but it was only in the morning and only if i slept in past 8am. its all very weird but were all starting to see the connection here with the h pylori. my tummy is a little uneasy these days at times but its nothing like when i had the full blown h pylori. that was worse then this joint pain issue. i wouldnt wish it upon my worst enemy. i lost a ton of weight and was hospitalized for a week. i went from my regular 150 pounds all the way to 115. and i could barely walk for a month i was so weak. the reason bob wants me off the RBF is he says its key i forget that im sick (uhuh like thats gunna happen) so i can remain happy so my immune system remains unnaffected by stress or unhappiness. which makes sense cuz when i get down the pain gets worse for sure. and yes i did read breifly awhile back about the connection of RA and h-pylori. as well h -pylori is linked to reactive arthritis. i have no rheumatoid factor at all and no anti ccp so the RA diagnosis is out the window im thinking. plus ive never had hand or wrist or toe involvement. its just shoulders (rarely) elbows (rarely), spine kinda, knees (no longer) and ankles (still a problem but not bad still fully functional). thats where im standing right now. im just waiting on igenex but bob now thinks we just wasted my money cuz i never mentioned the h-pylori and back pain till last week as he wasnt my doctor when that happened. we have definitley made the connection so hopefully this brings my issue to an end.
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