New member LymeUnknown needs help!

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Date Joined May 2005
Total Posts : 2671
   Posted 4/21/2009 9:25 AM (GMT -6)   
I'm reposting what LymeUnknown posted in one of the sticky threads.

Original post:

Hello, I am new here and probably will not be able to be on here much, but I need advice/help. I totally sympathize with all of you -- all you have had to go thru to get a diagnosis and to survive. I really don't think I can do it all!

I have 2 dogs and we hike in a tick infested park w/ the highest density of deer in the country at least 5 days per week. We use repellent and have been pretty lucky -- I've only had one bite that I know of.

Because I had an embedded tick for at least 2 days, 2 years ago, and because of the problems I am now having, I believe I may have Lyme disease. At the time, I did not get the rash and did not get sick until a few weeks later and my illness was relatively mild, so I was not concerned. Several months later, when I kept getting sudden recurring fevers, sudden severe flu-like body aches, sudden severely worsening depression (I was in treatment and had been doing well), severe anxiety, worsening neck, back and pelvic pain, I started looking up illnesses. Lyme was one of them, along w/ Lupus, chronic fatigue syndrome, and fibromyalgia. Because of the depression and the pain, my psych increased my meds which did seem to help. However, the recurring fevers at nite (along with a bad flu-like whole body pain) and burning pains have returned, altho not as severe or as often as before. The fatigue, however, is becoming almost unbearable, as is my back and pelvic pain. (the pelvic pain feels as if it is in the pelvic bone, not in my pelvic 'area')

I am one of those people who do not go to the Dr until something becomes unbearable or demands to be addressed. (I did recently go to a walk in clinic w/ a very sudden, severe sore throat that lasted 3 weeks, which was not strep) I also went to an endocrinologist a few weeks ago because my psych did a blood test that showed slightly low thyroid. It is slightly enlarged, but does not warrant treatment. Other than that, I have not been to a Dr in 8 years!
When my local newspaper published 3 articles on Lyme disease, at first I was excited at the prospect of testing for Lyme, believing I might get a diagnosis and some treatment and voila!

But so far everything I've read has been disappointing and scary. I believe in all of you and agree w/ and admire your stance of persistence and doing all the research you can. I have only been seriously researching now for a couple of weeks and it all feels hopeless and overwhelming. I don't feel I have it in me to go from Dr to Dr and I don't have any money, except for my insurance plan.

I have called all the Drs in my area who are Lyme specialists. I am on one 9 month waiting list, and none of the others are taking new patients.

On my local Lyme disease board, one person named a family Dr who ordered a blood test and diagnosed her Lyme disease, but he could or would not treat it. But since she was able to get a diagnosis from him and because he is on my insurance, I made an appt with him. I would like to try requesting the best blood test I can get, going this route.

If it is possible that I've had Lyme for 2 years, what test do you think I should request? The Western Blot? Or maybe CD57?
Do you think a family MD will be able to read either test, or would the lab make the diagnosis? (I have copied the list of bands to take to the Dr) Since I cannot afford the test from Igenex (sp?), would you recommend requesting Quest or Labcorps? I found the western blot test on Quest's website, but Labcorps does not show theirs. I have heard good and bad about both labs.

Another question: The tick may have been a Lone Star. I wrote to the CDC and they wrote back that if my tick was a Lone Star, then I could not have Lyme disease, however, possibly STARI and that there is currently no test for STARI. I find this info on some sites and some sites cite Lyme. What is your opinion?

Apologies, but I have more questions. about 37 years ago, I had an extremely engorged tick on my head (my hair was very long and thick and I did not check for ticks). At the time, Rocky Mt fever was the big scare. about 1 week later, I got very sick w/ a high fever, tonsilitis, and lump on my neck. I never had a rash, so we didn't worry about RM fever. The Dr figured my bite got infected and treated me w/ antibiotics. I continued to get recurrent severe tonsilitis for the next 2 years, until I got my tonsils removed.

Do you think there is any significance to this bite? I have had back and neck pain all of my adult life, but I have scoliosis and have attributed to that, along w/ a crushed disc in my neck. Was also first diagnosed with hypoglycemia, mitral valve prolapse, and depression approximately 26 years ago. Dr said mitral valve was common (no treatment needed) and I attributed the hypglyma and depression to a failing marraige and those struggles.

My most recent depression is nothing like anything I had in the past. It felt/feels so physical and comes on w/ a whallop, kicks my butt, and leaves for awhile. Same for the anxiety. The fatigue is now constant. I have become extremely short of breath (interferes w/ our hikes!), but am a smoker, trying to quit.

I'm sorry, I know I am writing to you as if you are Drs. But right now I believe that you all probably know more than the Dr I will go to. I need to make this visit count, as I cannot keep missing work for many Dr appts! At this time, I am more interested in a valid diagnosis (which I realize is difficult) than treatment. I'll worry about treatment when I learn more about what's going on. I will continue to research as much as I can (I have printed and read Dr Burrascano's paper several times! And have read every site I can find!), but work and my dogs come first.

Well, I think that if anyone can answer all my questions, they will have written a publishable paper on Lyme!

Thanks for any help from anyone!

eyes HOW COULD I FORGET to add this?? I am suffering increasingly worsening short term MEMORY problems. I lost one job because of them and am having issues at my current job because of them. I also lose words and forget what I was talking about in the middle of sentences.

Post Edited (LymeUnknown) : 4/19/2009 12:27:20 PM (GMT-6)
Lyme and co-infections since approximately 2002. Diagnosed in 2005. Treated for two years solid. Diagnosed with Lymphomatoid Papulosis in October 2007. Currently back on abx.

Moderator for Lyme Disease forum

Regular Member

Date Joined Nov 2008
Total Posts : 375
   Posted 4/22/2009 7:49 PM (GMT -6)   
Hi LymeUnknown !

Welcome to the board!! I am so sorry to hear about how bad you feel and that you have to wait that long to see an LLMD. From what you wrote about your symptoms I do agree it coud be Lyme. A rash / bullseye is no indication for an infection and only about 30% get the rash at all.

I am sorry that I cannot help you with a lab for testing because I stay in Europe. I have read about Igenex to be very reliable / currently the most recommended one but I think others here will help you with this.

From the lone star tick I only know that the Borrelia species is regarded to be uncultivable - that there is no testing available (yet) and oral abx is suggested. I honestly do not know what to think about this; I did not dick deeper into the STARI stuff - as far as I know we do not have this tick here.

Its good you try to read and learn as much as possible about Lyme and co- infections b/c we have to be our own advocate very often with all this.

Sorry that I am not that big of a help for you! I hope you will get answers soon as well as treatment for full recovery!!
Greetings from dorit.
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