So in 2005 I was diagnosed w/LD in California. It was through my university health center and the only reason they caught it was that I had the typical bulls eye rash, but they never found the tick.
I honestly don't know what tests they ran, but they ran two of them. The first one came out positive. The second one had about 8 or 9 different ways it could be positive or negative and I was negative on all but 1. They gave me 2 weeks doxycycline (sp?) and never retested or even saw me again.
I have continued to have chronic fatigue, though I only sleep 12-13 hours instead of 18-19 like before. My body temp runs low now, my back and some joints still hurt, and I am starting to believe that I may still have lyme. I also get these really bad migrains. I used to get them once a year, I am averaging them once to twice a month now.
Is it just in my head that I may still have it? Any suggestions? I am in California and most people want to believe that LD is not in California so there is not a lot of help out there for those with LD. I am just tired of not being able to function without tons of sleep.
Posted by bettyg (Member # 6147) on :
just logging off...
you never got rid of lyme; you were UNDERTREATED! print off dr. burrascano's lyme guidelines below ok. read thru it and you'll learn more.
post in SEEKING DR. for a california dr. can't remember...what part of calif. is sacramento in?? N., s, central by la, etc.
copy your entire post from here to over there so we have details!!
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Dr. Burrascano's most recent "Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses" @ http://www.ilads.org/burrascano_0905.html suggests that you discuss with your doctor continuing treatment until you are symptom free for 2 months.
please see BettyG's newbie package info on the link below; click on link at bottom of my package. Check it out as time permits for you! @ http://tinyurl.com/58eyou Posted by Hoosiers51 (Member # 15759) on :
If you got the bullseye rash in CA, how could Lyme not exist in CA?
I would follow your intuitions.
You are right to be fed up by needing 12 hours of sleep......no perfectly healthy person should need that much. So first of all, despite how your tests come back, don't let anyone tell you you don't have anything wrong. It's not in your head.
You should see a good Lyme doctor (LLMD) to have this investigated.
Get some tests ran for the coinfections.
Keep in mind, it could be something else besides Lyme, but you should definitely be evaluated by a professional that knows Lyme and follows the ILADS guidelines, because doctors following the IDSA guidelines would probably tell you you don't have it, which could end up hurting you if you do, obviously!
From what you have told us, obviously, Lyme seems likely, considering it is a serious illness you have had in the past.
The fatigue could suggest babesia too, so please don't rule that one out.
Posted by webmeg (Member # 13647) on :
I would definitely pursue the Lyme thing, it's a very good possibility that you still have it. Even the non lyme litereate docs tend to give 3 to 4 week of Doxy initially for lyme. You were very undertreated.
Get an IGeneX test. Call them and ask for a free test kit. Do the simple Western Blot IgM/IgG which will cost you $200 total. You'll need to find a lab that will draw the blood for you. Maybe your doctor will do it? You do need a doctor to sign the IGeneX form.
IGeneX is very accurate with their testing so this should give you some good information on whether or not to pursue lyme treatment.
If you are positive (or have any significant bands) then ask your current doctor for at least a month of Doxy and then find yourself an LLMD.
Lyme is not going to go away on its own. It can wax and wane a bit, but you've got to blast it with meds to get rid of it. If you do have Lyme and have had it 3 years not treated it will take you a while (many months) to get rid of it. But you can do it with a good LLMD!
~webmeg
Posted by lymie tony z (Member # 5130) on :
I certainly agree with the above posters....
PALO ALTO is where IGENIX lab is located in California....
You may need your regular physician to order the test but I believe I heard someone around
here or from IGENIX themselves discuss a way around that.
The NEWBIE links also contain a plethora of information and or you can use the search function on this website....
But there's also usually someone around to answer your personal questions...
zman
Posted by adamm (Member # 11910) on :
You were told untruths, as we all were.
Check out the stuff on lymecryme.com and lymeinfo.net, then
get a doc who treats it as the chronic condition it is.
Posted by James Marschner (Member # 13073) on :
No doubt about it!
Your treatment wasn't even CLOSE to being done.
You felt better on orals, which is VERy lucky. Many don't respond so fast! Or at all.
If your tests were POSITIVE the first time like that...YOU"RE LUCKY again! Now you're CDC positive so no Dr's can deny that the Dx was CORRECT.
Since your test WERE so easily positive, you must have been overwhelmed with Borrelia at the time...so it seems likely you would need at least 6 months of strong abx. Retest w/ western blot until YOUR IgM half is completely NEGATIVE.
Then you're cured. I would NEVER stop abx until I got a NEGATIVE IgM western.
Posted by bwlrchick268 (Member # 17302) on :
Thank you for the info. I am in the process of ordering a test through the website Igenex, I think. As I don't have insurance right now, I have to kind of do things on my own. Thanks for the new info! I will be taking all of this valuable information with me when I go back to the doctor's.
Apparently, after speaking with an insurance broker, if you have lyme or have had lyme in the last 5 years, you are uninsurable!! I lost group insurance and am trying to get it again. Anyway..thanks