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carrie48

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Lyme Disease
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Posted 12/4/2011 8:33 PM (GMT 0)
Hi carrie48,

Hello everyone else who reads this. I usually post in the fibro forum.

Carrie, I posted these questions in the fibromyalgia forum in the vibration thread. Thanks for sharing about your experiences with lymes disease. I was bit by a tick not too long before coming down with fibro and I'd like to know more about how you've been treated for it. Are you being treated with antibiotics? Is it very costly? Is it covered by insurance? How have your symptoms improved?

Thanks!

Posted 12/4/2011 9:24 PM (GMT 0)
Hi Almost Medfree!!
Welcome to our spot in the Healing Well site!! We are sure glad to have you!! yeah

While you wait for our most wonderful member Carrie, I have a few thought s for you!!

If you haven't already, it would be beneficial for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of relevant information, symptom lists and informative links that have been put together by our members here! Most of those who have read through it have said that it was very helpful!! We also have a pretty good search function on this forum to help you narrow down your search for information from past posts. We must be our own health advocates now and the best thing to arm yourself with is knowledge!

Lyme and the other tick-borne infections are often misdiagnosed as other things such as Fibro, ALS, Ms and even autism. Lyme actually mimics over 300 other conditions/illnesses!!!

With the scenario that you mentioned, I would highly suspect Lyme or another tick-borne infection (TBI) as the culprit! You will need to see a very knowledgeable doctor in order to be properly evaluated for a tick-borne infection, called a LLMD - Lyme literate medical doctor.

Treatments Tick-borne infections have to be as unique as your body is! Lyme suppresses the immune system, so testing is not very reliable, you need to be evaluated by someone who can recognize this infection by the symptoms and give a diagnosis based on them. If you need to find a doctor like this we can help some!! Just let us know what area you live in (not your exact location, but an area you are willing to travel to in order to get treatment), and we may have a member who gets treatment in that area, or we have some links that can be followed for signing up for referrals.

Some Lyme literate medical doctors accept insurance, although most don't. There is a huge controversy over the treatments, so in order to avoid a lot of issues some LLMD's just ask that you pay out of pocket up front, but you are always allowed to submit the proper forms to your insurance company to be reimbursed - lots of our members here do this.

Please take your time to go through the different posts here looking for the info that pertains to you, and don't forget to use the search function to help narrow down your search!

We look forward to getting to know you through your posts! smilewinkgrin
Posted 12/4/2011 10:03 PM (GMT 0)
Just a note here...semi-related topic. I used to post on this site under depression forum abt 5-6 years ago. I had had recurring bouts of anxiety that would cause depression since I was a teenager. I am now 52. They would occur about every five years and last about a year at a time. Turns out, it had been Lyme that has caused these recurring bouts all my life. So, the moral here I guess is that Lyme is the great mimic. And fibromyalgia is one of its favorites! If you have fibro and ahistory of a tickets bite, I'd get an opinion from a good Lyme doc. I just wish someone would have told me this many years ago! But, strangely, I am glad they did not. Lyme has actually been good for my life even with all its ugly symptoms. I have done far more with my life that I think I ever would without it....!
Posted 12/4/2011 10:54 PM (GMT 0)
Hi almost medfree. I am out of town and posting from my iPhone. I will be glad to answer your questions when I get to my desktop computer in the morning. I'm glad you came to this forum. I will be back on in morning.
Posted 12/5/2011 5:24 PM (GMT 0)
Hi Almost Medfree:

I posted a lot about my symptoms on the fibro thread so if you need any more info on that, let me know. When I received my positive test, I immediately saw an LLMD (lyme Literate MD). He started me on antibiotics that day. My insurance is paying for the antibiotics. We have to order our ABX through Medco - a 90 day mail in program). Medco called me and they do not support longterm abx treatment and would not refill my prescriptions. So, I just get them filled through the local pharmacy and my insurance is still covering them....

Anyhow, YES, my symptoms have improved a Lot!!!! It seems like I go through cycles...I have a couple of really good weeks followed by a bad couple of days, and then the cycle starts over again. With lyme, we get what are called "herxes". This happens when a large die off of bacteria floods your body with toxins. Until though toxins are released from your body, you basically feel like doo doo. Like, today, I'm feeling creepy crawlies and bubbles under my skin on my legs but I think it's because I'm herxing. Prior to starting treatment, I had numbness in my face, my feet, ankle area and toes. Also, I had very bad pain in my feet and toes. The sheets even touching my toes would really hurt and walking on bare feet was horrible. It hurt like crazy. The numbness and the pain are completely gone. I still get them off and on but it's rare now whereas, before treatment, I had it everyday.

I would highly suggest that you get a lyme test done. But...see an LLMD and be tested through Igenex. Chances are you have lyme and that is causing your fibro. Another person from the fibro/vibrating thread came over to this forum. Speaking of vibrating....I have that still, but MUCH LESS than before treatment. It used to drive me crazy! Also, I would get a horrible pulsating feeling...like the blood was pulsating in my leg with the timing of my heartbeat (which it probably was...but only it was driving my nuts). Anyway, that really made me nuts. That is pretty rare these days too but I still get it occasionally.

I am still testing positive for lyme, so I still have a ways to go with my treatment but I have to tell you, I'm WAY better now than I was a year ago!!!!
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