I've been in and out of doctors offices today. (BTW, angiogram today showed that everything is in perfect order, but cardiologist said that still doesn't rule out vasculitis and is sending me to JH's vasculitis clinic. So ridiculous! I will go to be on the safe side, but I am so over "mystery diagnosis 2011-13" that I am ready for my padded room! Focusing on the good news: the vasculitis scare got me to quit smoking, which I had no intention of ever really doing, to be honest. Though the cravings are getting bad, I'm done! Woo hoo!)
Also, got my prescription for LDN and it will be at my doorstep tomorrow! I'm calling my LLMD tomorrow morning to make sure it's ok with her to take it, but curiously looked on the Internet (I know, I said I wasn't going to do that anymore) to see if LDN could be taken with plaquenil (just to educate myself before I get docs ok. Don't worry doc will make the final call). Anyway, there was another Lyme board that popped up where many are taking a combo of abx, plaquenil, and LDN and doing much better. (Though, I won't get my hopes up.).
They were all also talking about following the "AP" protocol. Does anyone know what that is? Do you have any experiences with it?
I did 5 minutes of digging on the net (sorry, pinched for time today) and it seems the term AP is used in relation to scleroderma -- and AP stands for 'antibiotic protocol'.
I didn't have time to see what abx that includes, but interestingly the message board I was looking had some people saying they had scleroderma AND Lyme. Makes me wonder if there is a connection (as in, can a Lyme infection show itself as skin problems such as scleroderma), but that was all I got in 5 minutes!
I noticed a lot of people with Lyme, RA, fibromyalgia, MS, dermatomyosis, and even people in remission from cancer on the AP forum that google took me to. I initially thought it was JUST a Lyme forum, but it was an "AP" forum. Not surprisingly that i landed there bc I was looking up plaquenil, but the use of abx with it for all of those diagnoses left me curious.
I was reading something recently about theories that many of these mysterious and seemingly orphaned illnesses may be caused by bacteria and viruses that are so entwined with humankind over the millennia that it all becomes part of the background noise in our bodies, in symbiotic relationships more or less beneficial to one or both of 'host' and 'guest', but that can still make us chronically ill at some level. And if these infections respond to antibiotics like plaquenil, that could lend support to the concept. Mother Nature, up to her tricks.
Glad your heart consult came out well! And yes, a golden opportunity to give up smoking, as a gift to yourself. :) Think how much extra cash you'll have --
Keep us posted -- you sound strong -- all good wishes to you --
Jackie- thanks for the quitting smoking pat on the back! Pretty proud of myself;). There is definitely something to long term abx treating many different illnesses. When I first research plaquenil a month ago for it's anti-inflammatory effect, they was so much information about the mystery behind plaquenil, which was primarily a anti-malarial, yet aided patients with various autoimmune disorders. It is the very reason why I specifically, with much thought, asked my LLMD for this med. I figured if one doc says this autoimmune disorder (MS, hashi, lupus) and another doc says Lyme, then how could I possibly go wrong with a med that helps both? Hope my theory holds true.
Besides the chest pain, mild tremor, fatigue, vision, and minor digestive issues. I am in a much better place than I was a week ago. Not strong, yet, but it's pretty cool that I at least sound that way now:)
Cave- maybe? I'm thinking it might be abx protocol, though, only because the one common thread between everyone there that I noticed was an abx regimen. It appears a lot of them take them every other day, for some reason. It's "the road back foundation". Ever heard of it?
I think you're right! About it being Antibiotic Protocol----- I've heard of the Roadback Foundation but just refreshed my memory.
There is a link on their web site for 'newcomers' and AP (Antibiotic Protocol) is mentioned.
Seems the backbone for the AP is minocycline. But the site also mentions doxycycline.
snippet (I can't give the url a la MedHelp, sorry)
"You have reached a unique resource. The Road Back Foundation's (RBF) Website includes information and support regarding an important and often overlooked treatment option for rheumatic and related diseases. The particular focus here is antibiotic therapy, proven safe and effective in NIH-sponsored clinical trials. Thousands of patients have reported successfully using antibiotics for conditions including rheumatoid arthritis, scleroderma, juvenile rheumatoid arthritis, lupus, dermatomyositis, ankylosing spondylitis, Lyme disease, Reiter's syndrome, mixed connective tissue disease, fibromyalgia and psoriatic arthritis. Results of an international survey of patients documented dramatic results including relief of pain, the lessening of swollen joints and an overall successful return of quality of life."
Without saying I think they're right---- I do think it's worth investigating. :) And it might 'fit in' with the lastest news about antibiotics for from Denmark about antibiotics for back pain. That one I'm definitely interested in!
There were a lot of nay-sayers circulating around Thomas McPherson Brown, MD and his 'theory'. "Serious, boat-rocking troublemaker" was one of the qualities ascribed to him. LOL
Is he right? Is he wrong? Who knows, I sure don't------ but there is room for investigation.
More kudos for quitting smoking! Yayy! That's a huge boost to your health (and your kids'!) in so many ways. :) Nicotine almost immediately causes blood vessels to dilate and that is bad news for someone with inflammation. Since tick borne illnesses can form biofilms in blood vessels, I suspect nicotine makes them worse. My doc requires his patients to quit because it interferes with treatment so much.
I keep seeing more and more references to people with "unexplained" chronic conditions who get better with minocycline. It's an intracellular antibiotic (as is Doxy), and it just makes sense to me that what might look like an autoimmune disorder is really just the immune system attacking infected cells. Since plaquenil makes it easier for intracellular abx to penetrate cells, it also makes sense that it would help with treatment.
I just learned that my mom felt really tired and crummy for a couple years as a teenager. She sometimes had trouble getting out of bed. It sounds like a version of Chronic Fatigue Syndrome. She eventually improved, and shortly after that tested positive for Valley Fever, a hard to treat fungal infection that can be fatal to immune compromised people (which would include chronic Lyme patients). All the symptoms are on the Lyme list, too. How many other conditions with the same symptoms, like RA, Fibro, etc., are from chronic infections we just haven't figured out yet? (If I ever get these symptoms and it's not a Lyme relapse, I'm going to find a doc who will treat me with abx and possibly anti-virals and anti-fungals.)
Sorry to get off track, as we're dealing with Lyme infections, here, which are bad enough and difficult enough to treat all by themselves. Next time you see your LLMD I encourage you to ask about her general approach to treatment so you have some idea of what's next.
Treatment should be adjusted as needed, so there isn't a hard and fast path to follow, but you should still have some sense of next steps. Being on 100mg/day of Doxy is a conservative first step, and if she's not willing to do much more than that you'll want to know so you can find a new doc. I know someone whose doc just gave her doxy for 3 years after which she concluded that antibiotics didn't work. She didn't know that the doc didn't know how to treat her properly.
I am so glad you're in a better place this week! It's always good to hear of improvement. :) Hopefully you don't have any negative experiences at the vasculitis clinic. Just don't agree to take any steroids!
I found that if I went in expecting the doc (or dentist) to be unaware of Lyme and not believing that I had it, I wasn't disappointed. Then, if the doc was supportive, it was a nice bonus.
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