Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group lyme vs. AS - how to differentiate

oh god this is so complicated... but Jaybird brought it up so here goes.

HOW does one differentiate between chronic lyme and AS??

I am aware of the variable nature of symptoms of chronic lyme, the controversies surrounding it, etc. Coincidentally, my closest friends entire family has been treated for chronic lyme, including IV antibiotics, etc. And this friend is SO FRUSTRATED with me, as she views EVERYTHING as lyme disease.

My lyme tests have been inconclusive or negative, and there are no LLDocs here. But with disabling SIJ pain, psoriasis, pain in every joint except my ankles and flu-like symptoms AND HLA-b27 i am fairly confident that this is a spondylitis type condition.

so about 10 years ago this friend took me several hours downstate to a LLDoc (her family was done with treatment after many difficult years). THe woman took tons of money and tons of blood and then lost her license and we never heard from her again. SHE was less convinced than my friend, and her comment on that day was that she had to do some thinking about a differential diagnosis.

My personal feeling is that LLD's will see ALL of us as having lyme, and rheumies will see all of us as NOT having lyme ( unless we had a known tic bite or live in connecticut)

opinions?
wisdom?
anecdotes?

When I first got sick a year ago my symptoms were very lyme like (if you look at a chronic lyme list of symptoms which also looks like a lot of other diseases)- but I had tingling, numbness, weakness, brain fog, fatigue, eye pain and sensitivity to light plus the joint pain. I had two different doctors tell me it sounded like lyme (without me suggesting it). One a gp, another a neurologist- who ruled out MS. Two lyme titers came back negative - told that really means nothing though. So I began reading alot about lyme, but I don't remember ever reading anything about actual joint damage (except maybe knee), spine involvement or fusing.
It took about 9 months from the start of my bad symptoms for my "back" to start hurting, by then I'd had xrays by a rheumatologist who found evidence of fusing in my neck and inflammation in my sijoints. Prior to my back pain, I did have really bad ribcage pain, shortness of breath and neck pain - These were also listed in the lyme symptoms and now learn they're also AS symptoms.
I agree that a LLD will prob. see lyme, I almost went down that road and spent the money on the igenex tests. Your symptoms really sound like spondylitis. I can tell a difference on the NSD diet, that's been the confirmation for me. Good luck, mc

mcm,

I can't help but think that a no starch diet would be beneficial to some degree to many individuals affected with joint pains due to gut inflammation or permeability. There was a page on the ILADS site or a link from that site to a page where a doctor advocated a low-starch diet for those suffering from lyme. I wish I could find it. I found it an odd coincidence. I'm not denying that much of what swim2lakes communicates sounds like some form of spondylitis. However, could lyme have been a trigger, and could an infection still be present? I communicated with a woman out on the West Coast who apparently has been diagnosed with both AS and lyme. Guess which came first and was the trigger?

I'm not some kind of pro-lyme kook, think that every mysterious, undiagnosed ache and pain is due to lyme, or am a conspiracy theorist. OK, I lied about the last one. Also, that may make me a kook in the eyes of some folks, but I'm definitely not a pro-lyme kook. However, when the "off the shelf" treatments designed to help mitigate symptoms from RA, AS, and those with other "autoimmune" diseases don't help, then it really makes me wonder. Sure, not everyone is going to respond favorably to Enbrel, Humira, Suflasalzine, Methotrexate, or the myriad of other chemicals that the MDs throw at the symptoms, but you would think that one of these meds or a combo of these meds would provide some significant relief for some extended period of time. It also makes one wonder about other factors (infectious trigger and some sort of ongoing infection) when an individual suffers from significant multi-system (e.g. neurological, rheumatic, etc.) involvement.

I don't agree with the LLMD seeing nothing but lyme. I say that because I've been to at least one LLMD who did not confirm lyme based on clinical evaluation. I personally haven't ruled it out and am very suspicious, but so far no doctor has confirmed any diagnosis of lyme. I don't lobby for a diagnosis, but wouldn't be surprised if a doctor one day concludes I have an existing infection. Also, Swim2Lakes experience sounds like it doesn't support the theory that an LLMD only sees lyme. The doctor which was consulted downstate of Swim2Lakes didn't sound convinced of any sort of lyme infection in her case. Many of these LLMDs are also neurologists, rheumatologists, family internists, etc. and are oft persecuted by state medical boards for these diagnoses and treatment protocols. Therefore, it is my perception that these MDs have little to gain from diagnosing, or frequent diagnosis, or lyme.

Hi Swim2lakes i know how much it sucks trying to make sense of all of this. I think Alohaben said it best,that there really are no perfect answers when dealing with diseases like this. My first symptoms were fatigue and joint aches that turned into a constant ache starting in one and then
moved to my next ankle.

A month or two later i developed the back ache that no doctor would label AS because at that point i did not have sacrilitis and i am HLA-B27 negative. I went to Stanford Rheumatology and saw many many doctors before i found out that i have Lyme. From reading on Lymenet i learned that the Elisa misses as much as half of Lyme Disease cases within the first couple weeks and then you have a much much lower chance of testing positive later on in the infection.

After a few months of treating Lyme my AS symptoms progressed (probably from leaky gut) from my lower back into my SIJ's,hips, and neck. I started reading on here and it really became clear that i did have AS as well even though all the Rheumy's i had previously seen did not believe so. I agree with MCM that the NSD is probably the only way short of damage on MRI/Xray to prove you have AS and it is crucial to how i feel.

I am confident i also have Lyme because my Western Blot shows many positive bands both on IgM and IgG and i have a 60 on my CD-57 test a test used to measure and track the immune response specifically to Borrelia. Healthy and even unHealthy individuals should should be in the hundreds if there is no Lyme present.It might not be possible to tell which disease causes fatigue but i do feel that my ankles/wrists/knees/ and elbows are infected not inflamed because they have gotten a lot better with antibiotics and also because they do not wax and wane like my axial symptoms. Another thing to consider is that ticks to not just transmit Borrelia. Bartonella is actually much more commonly found in ticks and we test for 2 out of many known strains. Babesia and Erlichia are two other pathogens which more commonly then not come with Lyme and there a huge false negative testing rate with these a long with Lyme. Many people might disagree but it really is important to get tested with igenex because their test contains band 30 and 31 which correspond to the outer surface protein A and B generated by Lyme and were the 2 bands deemed most important enough to use for the creation of the Lymerix vaccine.(Every other Western Blot lacks these two bands)

Now that my Lyme rant is over, I would say your symptoms are more likely from AS. Especially the SIJ involvement and psoriasis really is a redflag that makes me think AS. Getting tested for Lyme and co-infections is worth it though because you could do a great deal of damage if you do have an infection and take immune suppressing drugs. I think one of the reasons people with Lyme see it in everything and everyone is because of how our medical system deals with the problem. When you learn just how many people are told they have Fibro or even worse MS for life when they could get better with antibiotics is nothing short of criminal and one feels compelled to save as many people from that fate as possible, even if they don't have Lyme. Anyway i wish you the best of luck let me know if you have any other questions i will try my best to help. Peace

Hi Everybody:

I was under the impression that blood tests could rule out Lyme disease, was I misinformed? On some tests I had in '02, when I had iritis, there is a line that says:

LYME DISEASE SCREEN 0.09 (interpretation: negative) 0.00 - 0.99 (reference level)

I had another test in '07, and was told again that I didn't have Lyme disease. We have four dogs, and a friend who I've visited a few times who lives in Old Lyme, CT, so I could certainly imagine a few ways I could have gotten it-

I probably should not have said that LLMD's always see lyme. I'm still a bit frustrated on how long it takes to get diagnosed with anything, AS sufferers at the top of the list. I def. agree that one can have lyme and AS with lyme the poss. trigger - the symptoms are so alike. I support LLMD's, wish they weren't being attacked so they wouldn't have to bill out-of-pocket, making diagnosis that much more difficult. I actually gave up the "could I have lyme" after seeing an Integrative Med. Clinic with a lyme-friendly MD and Naturopath, their testing methods were a bit "quackery" some would say, but they're successfully treating many lyme patients, told me without a doubt I don't have lyme. I still had my doubts til I saw my rheum and xray results.

I do plan to push for antibiotics at my next appt. because I'm a firm believer that bacteria are triggers (in AS, RA, even MS -I've read some MS patients have been treated with antibiotics with success.)
The NSD helping lyme patients is pretty interesting. I wish everyone the best of luck in any treatment, so very thankful for sites like this that provide us with an arsenal of information in the fight to feel better - I learned pretty quickly to take matters in my own hands if I wanted answers, its hard to find a doctor who has time to research each and every symptom and treatment.
Thanks for listening MC

Just wanted to added my two cents. When this came to a head for me two years ago. My GP tested me for everything he could think of and called in others for more help. 4 months before I got sick, I was back east for a funeral. I live in the Rocky Mtns. So I was tested for both Lyme and Rocky Mountain spotted fever. Both were negative. But I did test positive for Epstein-Barr and Parvo-virus. At the time I worked at a residential youth treatment center. (High suseptablilty in those conditions). When I seen the Infectious disease doc. He told me that unless Lyme and Rocky Mtn was tested in the proper window it would show negative. He said he did not rule it out just because the test was neg. However, he also said if it was the other problems where more important and the antibiotics I was on would help anyway. The point, I think, I am trying to make is, for me, I had several health and emotional issues come about in a short time span. The GP believes between the surgery, two funerals and two confirmed illnesses at one time my system attacked itself and may never stop. So if it is Lyme, treat the whole body. If it is not Lyme treat the whole body. Good luck what ever way it turns out.

well, aloha

strange seeing my name in post.

i had a very dear friend with toxic chronic lyme, met her kids and husband; lost track
of her several years ago ( i used her son's name in a post on another board and she
went nuke-ey on me, saying the state was tracking her and wanted to take her kids
because her lyme was all in her head and she was a danger to them...all her kids have
lyme and her husband and every friend also has it...all a doctor's/insurance company
conspiracy to keep people sick forever...on and on and on.)...

my first rheumy said i had ehler-danlos syndrome...second added AS to list; third
took away the eds but confirme the AS...my lyme friend told me many times this
doctor was trying to kill me&&& so when i grew restless and unhappy with his quality
of care and sense i sought out a lyme literate rheumy...who became the first doctor
to 'tell me the truth, as it were. He confirmed i has AS and not lyme and he looked
seriously at the whole pattern of issues and complaints and treatments.
I believe he's since died young himself, but this guy was good.

anyone going thru the diagnostic runaround ordeal OUGHT to have that
Western Blot test done by a good lab...(not QUEST)...it'll show a lot of details about
your health in general- it even showed my low-level infected teeth...each of the bands
has specific relevance.

btw...lyme does not require a tick bite and a bull'seye rash...person to person
transmission of lyme is possible (rather similarly to HIV)

diagnosis of anything difficult/rare/episodic and poorly-focused takes the most difficult
thing to get from the medical world...TIME...TIME...TIME and an informed, aware
doctor....rheumy # 4 gave me an hour and forty minutes of his time to review history
and test data before he reached his conclusions...in a world where insurance
providers want a doctor to see ten/twelve patients an hour...it's just very difficult
to get anywhere...oh, golly 'send 'em out for another test' and move on to the next case.

the conundrum...AS is a sytemic arthritis; Lyme treated and rebounding develops into
a systemic arthrtitis...after a while it all looks the same...it's all good.

Quote:

---

anyone going thru the diagnostic runaround ordeal OUGHT to have that
Western Blot test done by a good lab...(not QUEST)...it'll show a lot of details about
your health in general- it even showed my low-level infected teeth...each of the bands
has specific relevance

---

Ben,

Did your doctor show you the full results of the test? I had a lyme test done, at the encouragement of a friend whose sister was infected with lyme, by my GP a little over two years ago. She (the friend, not the doctor) thought that lyme might explain some of the "goofy" symptoms (chemical sensitivities, trigeminal neuralgia/cranial neuritis) that don't seem so common to AS that I'm still trying to resolve.

The test was done through LabCorp. It was a IgG/IgM test. Western Blot is mentioned on the results sheet, but I don't think one was done as the results of the initial testing were negative. It states that the CDC (oh...please...seriously...) recommends a Western Blot only when the IgG/IgM result returns equivocal or positive. The initial test was negative, and what I can interpret based on a copy of the lab work in my possession, no Western Blot was done.

You have piqued my interest with the fact that you state that the Western Blot picked up some low level infection in your teeth. I've been to the dentist three times, oral surgeon twice, and a TMJ doctor due to what I'm told is a facial (trigeminal) neuralgia. All of their exams and tests were negative for any structural dental problems. I continue to vacillate regarding whether I need to pursue resolution through an MD or some sort of dental explanation/solution. I've been to a neurologist who wanted me to schedule an MRI, but he was an a$$ and pushed some newfangled, chemical samples on me. Therefore, I ran and never went back. I also have not seen another neurologist. I guess the simple answer, enabled by a neurologist, is to use the drugs to cover up the symptoms. The thing is tearing my life apart, but I'm not yet willing to live in a drug induced haze as a trade-off for symptom relief (although it's getting close). A naturopath told me, based on some VEGA feedback testing gadget, that it might be NICO (Neuralgia Inducing Cavitational Osteonecrosis) and that I should see one of these biological dentists. However, 1) this diagnosis and the method used (a Cavitat scan) to diagnose the condition is rather controversial (imagine that!) 2) a pre-requisite of the condition seems to be having some sort of infected major dental work (think root canal), yet I've only ever had my wisdom teeth pulled and one minor filling on the opposite side (upper left) of the affected area (bottom right) 3) I'd like a more definitive answer from an MD before I spend thousands of dollars to have one of the biological dentists digging around in my head when it may not be necessary.

My curiosity lies in wondering if a Western Blot might shed any light on a potential dental cause, similar to the results of your Western Blot.

Any thoughts or additional insight based on your experiences would be appreciated. Thanks.

P.S. Sorry for what might be too much information, however, perhaps another member will read this and have some ideas.