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Old 12-18-2007, 03:28 AM   #1
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Join Date: Dec 2007
Location: ME, USA
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chanson56 HB User
symptoms with no diagnosis....

Hi, I am a 51 yo f, my confirmed diagonsises are: copd/emphysema, fibro, migraines, ptsd, raynauds syndrome, tmj. For migraine prevention I am on Inderol/Topamax. This past May (while in TN) I came down sick with flu symptoms (except for the congestion), my legs from the knee down swelled and my BP started going up (normal bp was 98/62). The drs. have done all the necessary lyme testing (twice) and they have come up neg. In June on a camping trip, I came down sick again. The headaches were the worst, fever, nausea, vomiting, muscle spasms--I lost 12 lbs. in 2 wks. I was sick for about 3 wks. In Sept. (we came back to ME in July) I came down sick again. When I didn't get better by Oct. I went to the hosp. Again headaches (every day), nausea, muscle spasms, swollen legs, fever. Between Sept. and Nov. my bp went as high as 150/116, I lost over 30 lbs. When I saw a dr. in Nov. he did all the blood test, lumbar pucture nothing showed up except a slight low blood count. The last time I saw the dr. was the beginning of Dec. I was feeling better, starting to gain weight again and she said there was nothing showing on the blood work, the MRI of my head, --I had started taking myself off most of the medications a month ago. Today is the 18th. I woke up with a fever, headache, muscle spasms. I know I am getting older, but, since May I have had low energy. When I get these 'bouts' of illness I am exhausted, the type of exhaustion when it is an effort to breath. I am normally a very active person. Some of the tests have come back 'possibles' are ehrlochsis, powassans virus, lymes--2nd tests confirmed neg.? Is there anyone out there that has had to deal with this type of illness??? I know people have suffered from other 'undiagnosed' problems before dr.s finally came up with a name and a cure. I have just about given up. Is there anyone else that has had these issues? Should I find another dr.(I only found this one in Nov. she was the only one in the area accepting new pts.)? Why do the same symptoms keep coming back? Thank you for listening, I don't know where else to turn to or what else to do....

 
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Old 12-18-2007, 10:59 AM   #2
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Join Date: Jan 2007
Location: Southern Maine U.S.A
Posts: 102
Lebnin HB User
Re: symptoms with no diagnosis....

Hi chanson56, I believe you should write a post on these boards for a Lyme literate doctor in your area. There are members that will let you know of the closest Lyme doctors to you. It wouldn't hurt to at least see one and see what he or she thinks. I do not know which labs did your lyme western blot testing but Igenex Lab in Palo Alto CA. is one of the most reliable. You can have tests for lyme come back negative but still have the disease. A lyme literate doctor will base a diagnoses on the clinical data and not just a test result. There is also other lyme tests avaliable too called HNK panel 1 ( CD57) sent to Lab Corp. I hope you find some relief soon, Take Care, Leb

 
Old 12-18-2007, 01:58 PM   #3
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Join Date: Dec 2007
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chanson56 HB User
Smile Re: symptoms with no diagnosis....

Thank you, Leb... I will try a dr. that specializes in Lyme diseases. What I thought was unusual, was after my second series of testing someone from the CDC called me. (That was when there was a possibility of powassans) I told her that the dr. that did all the blood work and lumbar puncture said everything looked fine. What puzzled me was she said she had the test results from both testings and even though the blood test 'would look okay, mine was 'borderline?'. I feel tired and second rate. The family dr. I am seeing now basically dismissed how I was feeling. Actually she made me feel like I was making up the symptoms. That has bothered me. There are three 'provable' constants; my rising bp, my weight loss, the fevers. I did buy a bp monitor at the dr.s request and continue to monitor it. And of course their own blood tests...Honestly, I did not realize that a tick disease could cause recurring symptoms--that was something no one told me. Again, thank you Leb, I will start looking for a specialty dr. as soon as I can.

 
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