As some of you know, I've been diagnosed with MS, & have also received positive Lyme disease & co-infections results from Germany. I'm now going to see a US LLMD.
Interestingly, I've met a number of people whilst attending my MS clinic in London who, like me, have also had major spinal surgery.
In 2006, I had a disectomy on a prolapsed disc following what I thought was an injury sustained moving furniture, to resolve debilitating sciatica down my l leg. Genetic spinal defects (fused vertebrae) were also noted on MRI. I was told, aged 21 at the time, that I had the spine of a manual labourer in his 50s.
I now read about the groundbreaking work going on in Denmark, where they say that some back problems are actually caused by bacteria, and that abx could cure 40% of chronic back pain, and I'm seeing spinal problems in a different light:
I was wondering if any Lyme sufferers have had really bad back problems too, that have perhaps necessitated surgery.
Interestingly, Dr Schwarzbach says (on this radio call -- http://www.blogtalkradio.com/in-short-order/2013/05/12/in-short-order--dr-armin-schwarzbach) that Lyme disease symptoms can initially localise in the side of the body on which you've been bitten, and the vast majority of my problems over the years, until recently, have all congregated on my left side. Food for thought, perhaps.
I read that also---- it's very thought provoking and I'd never say 'it can't work' although there are many people who will.
One doctor reminded 'us' of previous thoughts about H. pylori and stomach gastritis and ulcers. So true. I know that while I was being treated with abx by back pain diminished to a very low level. Now, off abx, it's in full swing again.
I realize that some members won't follow links but because of copyright issues many articles can't be copy/pasted here: Just small snippets are allowed. That's too bad because they might be missing an important clue to something that might help them.
"He notes that a possible plausible mechanism is that antibiotics can also have anti-inflammatory properties independent of their anti-infectious effects."
I'm not saying 'take abx for back pain'. I'm saying it's 'thought-provoking' and may or may not be help for all back pain sufferers.
I do know that back surgery is not something I'd choose over antibiotics.
I also noticed that study on how antibiotics relieved back pain, and it didn't really surprise me since I already believed Lyme could cause back pain by infecting the cartilage in the spine. I figure if Lyme can do it, other bacteria can, too. What did surprise me is that some researchers recognized the possibility of an infectious cause and got funding to do a real study.
I've read that some doctors have noticed a link between DDD (Degenerative Disk Disease) and Lyme. I've also read stories like mojogal's of Lyme patients needing joint replacements at ages too young to write off to normal aging.
Now we just need some brilliant researchers to figure out how to get our bodies to grow back cartilage that has deteriorated or been eaten away.
I shudder to wonder how many of those MS patients with back problems that you met have long term Lyme infections. You'll have to let us know if your back problems stabilize after Lyme treatment.
When I was in my early 30's I had a chiropractor tell me my lower disk appeared to be in the condition of someone that was in their 70s. There's stuff in there that parasites need to multiply. Lately I have been locating hardened "nodes", that now are becoming painful, they get painful, from an immune response I would guess, then they soften up, and the pain subsides. The majority of these nodes are near joints. I'm glad I always had a great distrust of physicians in general.
"We have examined the adherence of the spirochete to different components of the collagen fiber and demonstrated that decorin, a proteoglycan which decorates collagen fibers, can support the attachment of B. burgdorferi."
"It's generally a good practice to check for superceding authority"
Thank you for your helpful reminder. But I have and I almost always do.
But I'm certainly willing to read any 'superceding authority' articles that I might have missed. Can you furnish me with those --- ones that refute the old references I posted? Ones that state that spirochetes no longer reside, visit or infect collagen due to the findings of newer technologies or studies?
I come from an annoying (to some) background that loves the back and forth of scientific knowledge. (Not to be in any connected to the personal and emotional help that you, Jackie, in particular, are so very good at.)
Here's how it goes:
1. A study or scientific article is presented.
2. Another person thinks the article is weak or wrong.
3. Person # 2 then presents his/her article which refutes or amends the first article.
It can go on and on (grin) but I find them not only important but also a way to learn.
I'll await your articles and perhaps I'll learn something I didn't know. For that I would thank you.
(I'm not clear what the 'here be dragons' quote is about in relationship to this discussion, but it IS clever.)
Sorry, I don't have the time to parse your citations for updates and developments over 17 years, but if you don't have the time either, please consider at least noting for your readers that your sources may be out of date after so long.
Question: I'm guessing you are referring to collagen in joints? Is the damage reversible or can it at least be slowed down or stopped? If so, how? Also, this may be a stupid question, but since collagen is in our skin as well... Here goes... IndigoRiley and I have been adament that something is horribly affecting our skin. It is very thin and loose and very impressionable, the exact opposite myxedema. We look aged beyond our years and it has happened suddenly and rapidly. Could it be due to the Bb collagen "eating" theory/fact or is it more likely that it is malnourishment? We are also both very thin for reasons unknown as well.
I ran across an article a week ago that your question brings to mind ... I can't find it again, didn't bookmark it, but just found another one that is focused on Lyme manifestations and appearance in the skin, beyond the legendary circular rash.
Here's just a bit of it, and it is a wide-ranging article with lots of photos -- does this perhaps fit with your experience?
"The cutaneous manifestations of Lyme disease have been known for more than 100 years and are specified as different diseases. All of them show similar pathophysiological mechanisms.After invasion of the borrelial pathogen, the cellular immune response leads to noticeable changes in
the skin that usually proceed without epidermal involvement. In most cases, the manifestations in early local infection (erythema migrans, borrelial lymphocytoma) do not yet lead to a measurable antibody response,whereas acrodermatitis chronica atrophicans as a classical manifestation in late persistent infection regularly shows a massive increase in IgG antibody titers. All of these Borrelia-associated skin manifestations can be quickly diagnosed by clinical inspection.The therapy follows standardized schemes and in most cases, can cure the
I have now saved this article, and here is part of the identifier that may (or may not) take you to the article if you search for this:
and/or search for
Cutaneous Manifestations of Lyme borreliosis Dieter Hassler
Hassler is the author, and I just did that exact search and it brought up the article.
Also, I think I found the article I mentioned above that I didn't bookmark -- it is in the New England Journal of Medicine edition just recently out -- it is a 'free full text' article. It has some graphic color photos to illustrate the article, perhaps that will give you some ideas. (I have a subscription to some parts of the NEJM and it's free, so I doubt you'll get busted for trying to access it):
Authors: H.-Y. Chiu and Y.-H. Liao
N Engl J Med 2013;368:e23
Since I get it in email, so don't have a link to send you. If you have problems finding it online, let me know and we'll go to plan b.
Your description of your skin made me think of these possibilities ....
Acrodermatitis chronica atrophia- that is exactly it! I didn't see the pictures, but all the definitions are clearly what i am experiencing! I have never seen a write up or heard anything about this before. I truly think mainstream doctors are unaware of this symptom. They kept saying that my skin looked like that because I lost weight, but there are areas of the body where mass has gone unchanged, such as my calves and they have skin atrophy. Also, people lose 15-20 lbs everyday and their skin, though a tad looser, is not like this at all! I really need to consult with my LLMD about a more aggressive abx treatment (as in more than 100 mg of doxy a day) or find a new one.
Then there's the fact that toxoplasma, which jx28 has, binds to glucosamine, chrondroitin and other components of joints . Tidbits like is this why I sometimes try to tell people to be careful with supplementation. When I was supplementing heavy, I got bigger and strong, but so did the presence of the parasite. This is not a simple war we are wagging. So, trying to regrow the cartilage via supplementation, wouldn't be a wise thing to do until one is positive that toxo is gone. Toxo itself, via it's ability to release GABA, an inhibitory neurotransmitter, can give one a serious case of the dumbs! Not that I'm saying anyone here has a case, other than me. When I look back at some of the things I've done in my life, which I won't go into, I just say, "I can't believe I was that stupid!" Now I have another entity to blame other than myself! Toxo made me do it. LOL!! I would suppose the amount of joint deterioration would be directly correlated with how long one has been packing the stuff around. In my case, I remember back about 3rd grade playing in a sandpile with an older uncle. I found an odd lump in the sandpile, asked him what it was. He said "taste it, it's good". Didn't really trust him at the time, and didn't, but sometime later, in another sandpile, I found one of the lumps and thought, "well, maybe he knows something I don't". Perhaps just a little nibble. I quickly spat it out, but that's all it took. Growing pains, ha!
I have also heard of thinning skin with Lyme. I haven't had it, but my PA has asked about it multiple times. There are a number of different skin manifestations of Borreliosis, and since researchers insist that there's no chronic Lyme, they miss a lot of symptoms that show up in people with long term infections. They just don't know about a lot of the symptoms that we have.
I agree with you that your solution is treatment. 100mg of Doxy is quite a low dose for Lyme. I can only guess that your doctor is starting you out low and will hopefully up the dosage. 300-400mg a day is more appropriate for Lyme.
Not long ago I went through a skin problem, after all the goop fell down into my legs. In my case however, it was a thickening of the skin after the goop was reabsorbed. It looked like the very first stages of elephantiasis, thus I got tested for the filarial worms that cause it. The NIH will test for these things if you have some reason, but with the influx of people from endemic areas into the US, and the fact that some can be carriers, but asymptomatic, it's always something to consider. Skeeter bites a carrier, then bites you on the next meal....I worked around a bunch of Yeminis in a book factory that had mosquito breeding stations hanging from the ceiling. (Buckets to catch drips rather than fix the roof.) At one point, I could push in on the skin on my shin bone and the 1/4 deep indent would stay there awhile. Previously, and thankfully now, the bone is right below the skin. Whatever it was didn't like thymol, and extra virgin olive oil, and the swelling went down real quick. I also have a thickening and discoloration of my forearms that responded to the same. Still thicker than it used to be, and slightly discolored. Slowly getting better as nodes in the ulnar nerve slowly soften. Toxo's has such an appetite for things in cartilage that even had one of the nodes on my septum!
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