posted
Is this a common experience for people with Lyme? Or not so much? MRI's have shown deterioration of the joint on both my right and left side. I also have pain in my right shoulder but have been told it's bursitis. Other than that, no real joint pain elsewhere in my body.
At this point I feel confused as to what is causing what, as I've been told I have both Ankylosing Spondylitis and Lyme. There is a gene marker that in combination with a certain population demographic (white males in their 20's-30's), and certain symptoms -such as SI joint pain, add up to a dead give away for AS, all of which I have. This leads me to believe I do indeed have AS.
However, being told I have Lyme and experiencing a lot of the cognitive problems and fatigue (and other symptoms on the lyme list) makes me confused about the underlying cause...And fatigue is also very common in people with AS...
I'm trying to find a good LLMD, but also have an upcoming appointment with a Rhumatologist who is an AS specialist at a very well know medical center. I'm assuming this doctor is not what we would consider to be a lyme friendly MD, so am afraid to ask questions about Lyme being a factor in all this.
Should I wait to hear from both doctors to get a better idea of what's going on before I decide on moving forward with a treatment plan? How will I know which to trust? What if they give conflicting treatment plans?
It's all so very confusing to me...
Here's a link for a definition of AS for those who are interested:
Patients of AS usually end up on auto-immune suppressant drugs to stop the progression of the disease, not-steroids -but even stronger drugs, which I've read are supposed to be avoided for patients with lyme. (I already had a cortisone shot for the s.i. pain and the only thing it did was give me a hella nasty flare up for a few weeks.
And has anyone found any effective alternatives to NSAIDS for joint and muscle pain? I'm worried about the side effects to my digestive tract from long term use.
thanks so so much,
-c
Posts: 6 | From Berkeley, CA | Registered: Feb 2010
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posted
Sacroiliac joint pain can be a typical Lyme symptom. I get mine fixed fairly frequently by a chiropractor who specializes in low back care.
Rheumatologists generally don't acknowledge Lyme. You will most probably get an opinion that will differ from that of an LLMD. That comes with the territory at this point.
I think the best thing to do is to move forward with seeing a good LLMD.
FYI, you can do a search for any archive topic here via the search feature at the top of the screen. Just type in your key words and read what others have said.
Posts: 13171 | From San Francisco | Registered: May 2006
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
I looked at the information about ankylosing spondylitis, and much of it looks like things that happen with tick borne infection.
quote:In 40% of cases, ankylosing spondylitis is associated with an inflammation of the eye (iridocyclitis and uveitis), causing redness, eye pain, vision loss, floaters and photophobia.
This happens with Lyme Disease.
quote:Another common symptom is generalized fatigue...
...pain and swelling of large limb joints, particularly the knee.
Well, THOSE sound like Lyme symptoms, don't they.
I used to have pain in the sacroiliac area, and it improved after using a Thermotex infrared pad for several months on low back pain.
I now use an LED light therapy unit on painful spots. It's sore if I press firmly, but it doesn't hurt all the time.
Treating Ankylosing Spondylitis calls for anti inflammatory medications. I think using supplements to reduce inflammation is safer.
You can get it at any Vitamin Shoppe and many health stores now carry it.
It got me off the prescription NSAID Bextra (while it was still on the market). My vet has approved it for use in my elderly dogs.
From your link above The association of AS with HLA-B27 suggests that the condition involves CD8 T cells, which interact with HLA-B. It is not proven that this interaction involves a self antigen and at least in the related Reiter's syndrome (reactive arthritis), which follows infections, the antigens involved are likely to be derived from intracellular microorganisms.
FWIW, I'd get the second opinion if you have doubts, but would noway nohow be satisfied with a label diagnosis that has no known cause and only a rule-out diagnosis. Then run to the LLMD and see if Lyme/coinfection treatment clears up your issues.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
I have almost the same pains that you do= sacroiliac pain, and in the past I had shoulder pain on one particular tendon that looked like bursitis (i've also had knee pain but it's not as bad as all the others, and have had a meningitis sort of neck pain that's unrelated to the other types of pain).
Anyway, yeah, Lyme can do that. It can cause problems with inflammation that can either look like tendon/ligament/bursitis issues, or can cause actual joint tissues to be inflamed and in pain.
Whatever you do, don't take immune suppressants of any sort. The fact that you had a 'flare' from taking one already may tell a good LLMD a few things about you having Lyme. Turmeric (zyflamend and other supplement brands, or just the spice) certainly can help with controlling inflammation in many people
I'd suggest reading Singleton's book The Lyme Disease Solution- it talks a LOT about the many ways that inflammation happens and what to do about it, in addition to antibiotics for the underlying Lyme.
I also had resolution of my bursitis pain by going to an acupuncturist for probably 8 sessions over a month and a half (that's a bit pricey in some areas). I wish I had an acupuncturist right now for the iliosacral pain, I'm pretty sure that would help me deal with it. They can both control pain directly (as far as we know from studies) by interfering with pain signaling in the nervous system, and they can do a lot to bring down inflammation. they have very different terms for it all that come from Chinese traditional medicine, but the results are real and have been studied extensively for various pain syndromes. They do NOT need to know what exactly you have, either- they'll treat the inflammation that they see from your symptoms, and dont care if it's AS or Lyme that causes it- they have a rather different diagnostic system that they go by.
-------------------- Symptom Free!!! Thank you all!!!!
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i'm getting PT for sacroilliac pain. we think it was from a fall but i have had lyme a long time. when she evaled me she found one hip as 2 inches higher than the other...i've been walkig like that and npan 4 months.
after she wored on me my hips were even and i had no pain for about 6 hrs...she thinks i will be fi in a month
i'm dx with lots of osteo arthritis but not in hips
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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