Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group just diagnosed with lyme, could use some advice

hello all
i know a few of you here have lyme disease and i am wondering if you have any advice to share with me. over the summer things got really bad for me.. i was having very extreme weird symptoms that were effecting my mental state and cognitive abilities very much so. along with debilitating physical symptoms: pain, extreme fatigue, weakness, slow pounding heart beat, losing my hair, etc etc. i had know idea what was happening.. so this all makes a lot of sense.
i am just wondering now if i even have AS, or if maybe lyme is what has been causing all of my autoimmune problems.. how would i find this out? do i stay on the no starch diet? i just have so many questions about all of this..
there is a big part of me that is scared to start researching lyme disease because it kind of terrifies me, and i have been pretty dysfunctional for about 5 months now.. i really just need some hope, i dont want to read a bunch of horror stories about lyme disease and what it can do.
i dont know where to begin.
i do have a doctor who treats lyme, and i hear he is pretty good. but i really want the best doctor i can find. i have been sick for 6 years and i want to get on top of this asap. i also dont know what to do about money, i have not been able to work because of my health.. and have no money. how do people treat this without much money?? i have insurance but i dont think they pay for too much.
anyhow, my questions could go on and on.. i am just looking for a little direction and support if possible.
thanks in advance

kelly

Hey Kelly. I'm torn with how I feel about lyme. Sometimes I feel it's the main thing responsible for most people's AS. Other times I feel like its a complete crock of you know what. I've been seeing a lyme doctor for the past 6 or 7 months and really he's done nothing for me.

What makes you think you have lyme? Did your doctor find any bacteria? If so, what tests have you had done?

i dont know the exact tests.. some tests were sent to igenex i think, and a bunch of them came back positive, and also some bacterial stuff as well as the cd57 lymphs test thing..
my back pain has been significantly better.. the lyme diagnosis makes so much sense as for what has been happening to me over the past 6 years.. the AS has only been for 3 years.. but recently, i do not have many symptoms of that, my back pain is so much better, which is weird.. just debilitating fatigue, weakness, brain fog, heart palps, anxiety, flu like feelings and weird headaches.. etc. and my adrenals tested fine.. i know i have thyroid problems, but nothing that can account for the way i have been feeling for the past 5 months. my thyroid levels have not changed much in years, but the way i have been feeling has.
i am hoping to get some help with this lyme stuff, it is really the last hope i have to help manage my health problems.

Well, first step, you have to find out what bacterias your dealing with. Once you figure that out you can look into which antibiotics work best for the particular bactera. You can also have sensetivity testing done ont he bactera to see which antibiotic will be most effective. I've also read quite a bit about diet being used to treat lyme. Particularly a low fat plant based diet.

I'll give you my experience. I was dxd with Lyme too but I have never seen a tick and I don't believe I had it. I took antibiotics for about a year and I went from a 7 in pain to a 9 because the antibiotucs make you flare. It was only after being so sick of being in A TON of pain I told myself to forget the lyme thing, I even flew to a lyme specialist. I was so despereate and in pain I would do anthing and so I started an extremely strict no starch diet. My pain levels started to drop when I ate greens(romain, green leaf lettuce)a little chicken and a few raw fruits and veggies, that is it. The antibiotics made me feel so awful and I can't beleive how bad I felt that whole year beleiving I had lyme.

I do beleive people have lyme and it can affect their joints, heart and brain. I just don't think my diagnosis was correct. It might be right for you, but I had to share with you my experience.
I hope you get better, take care.

what tests did you have done that confirmed you had lyme? that scares me, i def would not want to go on antibiotics if the lyme diagnosis is not correct. my pain is not so much of an issue these days.. it is way more the fatigue, and brain stuff.