posted
Hi, I'm new to this but need help. I have been sick for at least 5 months. Irregular patterns of shooting pains through my limbs, my hands, feet, arms and legs, SEVERE joint pain, muscle pain, horrible fatigue, dizziness....I lived in Philadelphia and the area for 5 years. Moved here to Nashville 4 years ago. I've been bitten by COUNTLESS TICKS both here and in the northeast. I spend tons of time outdoors, in the woods. I don't recall a rash. Lyme titer and PCR are negative. Doc says it's not Lyme. Nothing else, no other tests show up with anything though. I have read you can have it and these tests come back neg. I am so SICK. Please, someone who knows they have confirmed late phase Lyme, please talk to me. I'm so helpless and so depressed by this debilitating situation. Thank you.
Posts: 7 | From nashville | Registered: Apr 2007
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
mb, I pm'd you when I saw one of your posts buried in another thread... I'm sorry to hear you're so sick.
I also tested negative countless times before finally being diagnosed. The docs did not know what to tell me, but they assured me it was "not Lyme". I remember it was very frightening and lonely to be that sick and not know why.
Don't know if you've seen it but there is whole thread in general support just for *welcoming you*!
Lots of great info that might be of help to you in that thread.
Check it out - it's titled "Special note to new member "mb"......others: please welcome mb!!"
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Dear Mb,
Lyme is a clinical diagnosis.
Now repeat that to yourself several times...
Blood work is helpful in supporting that diagnosis, but unfortunately it is NOT an exact science.
Were you tested via Igenex lab in California?
I was unlucky enough to be tested through Quest lab.
This was before I found this board and started to really get educated re: Lyme and co-infections.
I only had one band show up positive (lucky), Igm band 23.
Of course I also had everything else under the sun tested including my heart, lungs, Ana, Rheumatoid factor, Aids, etc.
That was the only positive test I had (except for the blood in my urine--probably related to babesia.)
You need to find a LLMD....You need to get tested through a lab that specializes in tick borne illnesses.
It is a frustrated, frightening place to know all of your symptoms match something, but nothing or no one will diagnose you.
Hang in there. Many on this board have been through the same experience.
Please find a LLMD.....as soon as possible.
That is your best hope for an accurate diagnosis and getting on the road to getting better.
I couldn't even get a MD to do a Western Blot....
took 7 different doctors to finally find one just to do the test....
The doctor who finally did do my Western Blot put me on 200mg of doxy a day.
This was supposed to be my regimen for 90 days.
When asked how many Lyme patients she had treated, the response was "oh, you are my third!!!!"
Yikes!!! I found this board, learned that 200mg of doxy a day wasn't nearly enough, found a LLMD through this board
and am slowly getting better under his care.
I shudder to think of where I may be had I not found this place and was directed to a LLMD.
Hang in there.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Welcome 'MB',,,
I agree to find an LLMD(I hope you know what that means by now) They can give you your life back ,,altho it can be a rough ride back home.
'IF' you are unable to find a LLMD locally travel,its the best thing you can do for you at this time.
here's one more angle I hate to mention here,,,but if the shoe fits sometimes we MUST wear them. I stumbled on a different site that is doing the same thing,same drugs,same time frames,,,but seems to have MUCH less insurance rejection,doc rejection, and they ARE getting the treatment.
Does it really MAKE a difference WHAT we call this crappy disease?? Isnt getting well,,,getting the drugs,,,staying on course,,,getting our lives back>???foremost thing we NEED!!! These people have same sxs,same treatments,same long term results. It claimed to be a co-infection of lyme anyway.
But I KNOW my pcp would be tickled to help me and would be glad to go thru this,,,as long as we dont say the word'lyme'. I am going to try it anyway!! These people call their disease "CPN", google it and see,,I hesitate to post a link to that site out of respect for this site, but I am in awe of what they can do and resistance is 'light'.
I see it as a way to battle the same disease by 'calling'; it a different name!!! I am NOT dis'ing either one,I think they are both right,just easier on their side of the fence!! For all you insurance and 'duck' challenged people, try it,read there you may get relief and treatment you cant get calling it something else!!
I jump down off my soap box now!!Being --just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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