Kickas.org Forums Ankylosing Spondylitis General Discussion Helpful Tips diagnosis

Hi Theresa,
Interesting that you bring this up. I was doing some reading on the misdiagnosis of MS and Lyme Disease. Do you know about how long ago you were infected with Lyme before receiving the proper diagnosis? Did you or your daughter have the Bull's Eye that one typically gets after being bit? I have a friend who was recently diagnosed with MS. I wonder if the doc did a check for LD. Wouldn't you think that most neurologists would check that too? Perhaps I should bring it up to him. Any info you have would be appreciated.
Take care,
Cara

My daughter was infected definately in August of 1993 and was not diagnosed (albeit I tried, but they said it was not in Oregon so they would not test) until 2001. She had the bite and what looked like ringworm, followed a week later by fever and body rash- (now the CDC says it can be any rash after tick bite, not necessarily the bulls-eye which is only seen in less than 40% of the cases). However, if seen the bullseye is a definitave for borellia according to the CDC. She is positive for Lyme and co-infections by PCR testing (testing for the dna).

Before the lyme diagnosis, Our daughter went through congestive heart failure, seizures, fibromyalgia, chronic fatigue, "recurrent flu syndome", mental "fog" followed by memory loss and processing problems. Her IQ dropped severely, and she became "late onset autistic", and finally probably MS diagnosis due to demylenation on her brain and spinal cord. During this time the other problems in her spine convinced the doctors she also had AS. After her last heart attack she was finally tested for lyme and was positive, we went to a specialist in Connecticut who ran all kinds of tests to rule out other diseases such as leukemia, lupus etc and found also some co infections. The doctors (neuros included) here did not even know what I was talking about when I told them about the babesia, erlichia and bartonella. We came very close to loosing our daughter, which is why I am so vigilant to let others know how to rule out lyme with specialists in Lyme. Three neurologists didnt even find it, and further one of them to this day wiht the positive lyme tests ! and improvement (no wheelchair anymore...no seizures...and cognitive function improvement) still says...no she has MS, we should give her steroids...(a huge NO WAY for lyme patients as it supresses the immune system)

I dont know how long I have had lyme. I have arthritic component, cardiac and verbal processing issues with mine. Since I started treatment I have become more able to speak fluently again, and cardiac symptoms have resided. Still have some arthritis though.

Hope that helps...and please do see a LLMD recommended by the INternational lyme and associated disease society. http://www.ilads.org

Other resources are http://www.lymenet.org or http://www.junipermeadow.org/lyme or http://www.lymedisease.org or http://www.lyme.org or http://www.lymediseaseassociatoin.org .

Sincerely

Theresa


I made your links clickable.

Edited by Michelle in Md on 10/15/03 07:25 PM (server time).

Lori,
Sorry I didn't see your post. But the splitting nail, The doctors, rhuemies, dermatologists say its that I have psorias under the nail that causes them to split....Ever heard that one?.. And my rhuemy said that all those systums are equated to having AS...>??/

Dan

Cape Henry Lighthouses

hmmmmm, interesting....Eric has a rhuemy appt tomorrow. If I remember, I will ask him about this....

He is always looking at Erics fingernails, and Eric does have psoriasis. Only on his knees, ankles, elbows and scalp though....

Who could tell anyways....the kid bites his nails down to the quick.

Press your point about AS being in the family! Actually, I would go to another doctor, and bring the blood test results that show that you have the marker HLB27. I went thru the same stuff; and it took 12 years to find out what I had-a Chiropractor, who used to be an MD, diagnosed it-he could tell by the way I walked that I had it.

Vinnie

I am in the process of being diagnosed for AS. I am 29 and have suffered from back pain then hip pain for approx 4 years. After seeing my 5th doctor I have narrowed it down to either RA or AS. My Dad has AS so that is a clue there. I have some of the classical symtoms of AS that I have read about. I am very stiff in the moring and the hip pain is worse in the morning as well. It seems like no matter how much I strech I cannot loosen up this joint. I also have trouble sleeping on my stomach now adays since I get a sharp pain in my lower back if I do. Most days I am OK as long as I don't wear tight clothing.. if I do it is quite painful all day. Also, I have bumps in my Lymph nodes and wonder if this is also associated with AS.
Right now I am just seeing a sports medicine doctor and he has me on anti-inflamatory medicine. I have seen some improvement in flexibility and pain on some days. However the medicine makes me feel loopy at times and I wonder about the long term affects. I am just wondering if I should request a bone-scan or other tests so I can get properly diagnosed. Also, I am confused on if the LSD diet really works. Any comments are appreciated.

Hey everyone,

I'm a 21-year old male newly diagnosed with AS. I'm still having pain in my right Achilles heel, back (mid-area), right ring finger (inflammed), left hip, and left jaw. The pain lessened since my rheumy gave me NSAIDs. Currently, i'm taking Methotrexate (weekly) and just took my first dose earlier in the week. Does it improve the pain greatly? The Indocid i take seems to lessen pain but only up to a certain level. Also, i have a question for those already fused. Just wanna know how it feels and stuff. I consider myself a bit fortunate since I was diagnosed much earlier than some of the people who post here. Thanks.

sassy, this is probably what the doctor was looking for ..

* psoriasis involving the nails :
http://www.telemedicine.org/kp1.htm
http://www.emedicine.com/derm/topic363.htm

"So long and thanks for all the fish" - Hitch Hikers Guide To The Galaxy

catm,
your symptoms are all familiar to me: stiffness in the morning, pain in lower back whilst sleeping, swollen lymph nodes.. even the reaction to the anti-inflammatory drugs. The swollen lymph nodes is something I can not remember anyone else complaining of, but I have had them several times in the past. Particularly under the armpit.

I for one do follow the NSD and LSD approach, and it does work. I had major benefits from cutting out grains, although I kept eating rice. So I followed quite an asian style of diet. Wheat causes terrible inflammation which lasts (in my case) for about 48 hours.. and if you go into the NSD forum you will find out that is a very typical reaction for people with AS. Thai food is great, as they use almost no wheat in their cooking.

"So long and thanks for all the fish" - Hitch Hikers Guide To The Galaxy

Hey maci i just recently got diagnosed with AS. I am female and 36 years old and it does event alot of women. These doctors need to go back to school and learn the one thing the appearantly didn't and that is to listen to their patients instead of pretending to know how we feel. Please don't give up and try to get the diagnose because it will help. My insurance even covered the electro machine for me to keep at home. Look forward to hearing from you Maci.

One Day At A Time ,

Dee

One Day At A Time