I'm sure Lyme has added to the pile of sticks on the camels back. But I kept feeling my symptoms weren't typical and now I think I know why.

My LLMD kept telling me I have salmonella induced reactive arthritis. Well, I've found that is a type of arthritis called ankylosing spondylitis. With a little research, I know feel like my life is so well explained!

Ankylosing spondylitis is an arthritis of the spine. The most common symptom is lower back pain...ever since I was about 14 I had low back pain. The large joints like knees are often the first infected...I had unexplained swelling and pain in my knee starting when I was 14 and lasting for the next 8 years.

For reactive arthritis, ankylosing spondylitis usually starts about 2 weeks after infection...I had terrible gas pains on a school trip to England and my knee problems started a few weeks after I returned.

In some cases, ankylosing spondylitis causes shoulder pain...I have had pain in my shoulder blades since I started college and it has become so bad I need to take Flexeril. It also causes "sausage fingers" - I have had inflammation in my hands and fingers for 2 years now.

Do you have the classic bamboo spine x-rays and the fusing of the pelvic bones? Ankylosing spondylitis was one of the things I was looking at when I was considering Lyme.

Since it also got treated with abx, I decided not to push for the dx. I understand it also has a specific HLA type associated with it, but didn't get tested for that yet either.

I often think of Lyme as short hand for mixed, chronic bacterial infections. It may not always be Borrelia burgdorferi, but it sure is turning out to be bacterial in more cases than we can count.

I'm sorry to hear you have AS and that it's taken you so long to find it out. I wish you the best and understand that it affects women less severely than men, and that it's a highly variable disease (my doctor's words). I liked your description of feeling as though it was like finding your diary! I think I understand and hope to feel that way too someday.

It's all so confusing. I was recently diagnosed with HLA-B27 related disease. They are calling it that b/c I have the antigen for it but my x-rays do not reveal those characteristic SI joint changes demonstrated in full-blown AS. Do you know if you have those changes?

At the time I was diagnosed by a rheumatologist, I started also developing neuro symptoms and that sent me down the path to more specialists who so far have not found anything at all. On my own, I have found my way back to believing it's most likely Lyme. I don't see how I could have developed all the HLA-B27 stuff simultaneous to a totally unrelated neurological disorder. Once my doctors saw that HLA-B27, though, I think they latched onto it and disregarded the rest, taking my negative Lyme tests as definitive.

Did you ever have any neuro symptoms? Twitching etc.?

I'm not discounting the fact that my symptoms might still be HLA-B27, I think it's more likely that in my case it's Lyme because I have 97% of the symptoms often listed, not just the arthritic stuff.

I kind of discovered I was diagnosed with AS by accident. My doctor told me reactive arthritis, and that it was similar to Reiter's Syndrome only she didn't use that terminology because some doctor's will assume the Reiter's was from an STD. In researching Reactive Arthritis and Reiter's, I discovered they are considered AS.

I kind of think x-rays or MRIs now are a waste of money. Will it really change my treatment? Probably not. But I am going to bring a brochure with all the symptoms of AS into my pain specialist who still thinks I have fibro.

I have myoclonus (big twitching) which is one of my only neuro symptoms. The debate is still on as to whether burning in my legs is neuro or not.

I have checked out the Road Back already.

How did your doc arrive at the diagnosis of AS? I was told that it's those telltale changes in your sacroilliac joints that indicate full-blown AS...plus the bamboo-like changes in the spine in later AS. I know lots of ppl have the gene that causes it but a vast majority of ppl with the gene never manifest symptoms.

For me, I have the gene and all these other symptoms but I have so many non-AS symtpoms -- the neuro stuff, pains on top of my head, brain feels swollen, dizziness -- that makes me think it's Lyme. What has your twitching been attributed to?

Do your docs think they can get at the AS symptoms with abx? Did they test you for salmonella and find it? My dr didn't raise that with me, just put me on cox-2 inhibitors and told me to check in in 3 months.

Feel free to email me if you like.

My doctor never used the term AS, and I think what I have might actually be a form of Spondylitis and not Ankylosing Spondylitis. The terms my doc has used "spondyloarthritis" "reactive arthritis" and "Reiter's Syndrome" I think AS and reactive arthritis/Reiter's are types of spondylitis.

I came across a website - www.spondylitis.org that has really helped me understand this...although each day I find more on the website and understand a bit more.

I was diagnosed based on my medical history - I brought a detailed chronological history to my first appointment listing all the different times I had muscle or joint pain. I also tested positive for a current salmonella infection (showed antibodies that were still fighting the infection - IGM I think) and the antibodies increased when on abx.

My herxing has also not been as typical of Lyme as it is of spondylitis. It was the symptoms that have worsened since starting abx combined with the increase in salmonella antibodies that made my doc say that the reactive arthritis is causing more of my symptoms than the Lyme.

I need to check my blood tests to see if I have the gene - but I know not everyone with these illnesses has the HLA-B27 gene.

Sometimes we have more than one infection, so symptoms don't seem to fit one diagnosis. I still do have the positive Lyme tests, so it's possible that's where my myoclonus (twitching) comes from. But who knows, maybe it comes from the brain trying to deal with the muscle pain? There's so much we don't know about our bodies.

It is certainly important to continue to search for the root cause of all of your symptoms and not just accept that it is all caused by lyme.

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Originally posted by riversinger:
Aniek,

Do you have the classic bamboo spine x-rays and the fusing of the pelvic bones? Ankylosing spondylitis was one of the things I was looking at when I was considering Lyme.

Since it also got treated with abx, I decided not to push for the dx. I understand it also has a specific HLA type associated with it, but didn't get tested for that yet either.

I often think of Lyme as short hand for mixed, chronic bacterial infections. It may not always be Borrelia burgdorferi, but it sure is turning out to be bacterial in more cases than we can count.

Have you checked out The Road Back?

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Another illness that has many symptoms similar to Lyme is Mercury poisoning. My LLMD was smart enough to pick up on this - even though I was being treated for active Lyme at the same time.

I had mercury poisoning really bad - and it wasn't from eating a lot of fish. It was from the amalgam mercury fillings. So don't believe it if you are told they don't cause a problem ever. The problem will usually surface for people who are chronic teeth grinders. If you are, and you have these mercury fillings, be sure to get a mouthgard to help reduce this problem.

If you have mercury poisoning, a quick and easy way to find out is to have some of your hair analyzed. Also, you hair will break very, very easy (not fall out though, just break). The mercury molecules combine with your bodies digestive enzymes, and make it hard for you to digest protein. So as a result of mercury poisoning, your body, AND YOUR HAIR, will really be lacking in the protein area.

Lastly, don't think about going on an Atkins (high protein) diet, until you make sure you can actually "digest protein". I tried it, and gained weight! Only found out later the reason why, I couldn't digest protein.

Treat the metals and then treat the infections and you will get well as I did.

I posted on this yesterday under the title
Metals and Candida.

My best to all.

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Originally posted by Golf Tick44:
Aniek, Your story sounds JUST like mine! Many years ago,(30) I was sent to a arthritis Dr. He said I had Spondylitis, I also had digestive problems. I later discovered I had late,Very late, stage lyme diease. Here is my confusion with the MANY different diagnoses I have been given. If you ask the Doc. "What is the cause of this illness?" With ALL of my other diagnoses, except Lyme,they say "There is NO known cause'!! So in my mind it's just a name they are putting on a set of symptoms. Health and Happiness, Phil

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AMEN To that!

In my case, my doctor has a reason for the AS - it's a salmonella infection. The question remains as it does in chronic Lyme - is the infection still active, and can symptoms be reversed with abx treatment?