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Lyme Disease Message Board

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Hi 10D:

I really do feel for you, it is so depressing to be sick and not know why. I would be happy to share a little of my story with you.

I have not felt well for probably 4 years. I had a series of miscarriages, then had some problems that required a stress echo and an upper gi series. Everything was negative. I also started to experience a lot of fatigue. All the Dr's kept telling me-stress, anxiety, depression etc. I knew in my gut that it was none of these things and that something was [I]really[/I] wrong. Fast forward to this past summer. I had a rash on my leg (petechial-not a bullseye) and started to have visual disturbances, depth perception, floaters, everything was too bright, balance and hearing issues. This all went on for a few months until I had two episodes of near fainting while driving that landed me in the ER.

I had CT scans, MRI's, balance and hearing tests, ultrsounds-carotid and abdominal, blood work, wore a holter monitor did another stress test, eeg-on and on. I had been told that I had atypical migraines, aytpical menieres, atypical seizures etc, etc,-like you said every specialist that I saw thought I had some variant of one of their diseases. The only thing that has come back abnormal is my eeg-consistent with lyme. A nurse friend asked if I had been tested for lyme and I started to research lyme. The minute I saw the symptoms and read peoples stories I new in my gut that this was what I had. I have been tested multiple times by quest, labcorp-all negative. My PCP agreed that it could be lyme and started me on 200 doxy- I herxed after 4 days and pretty much continually after that. After a month I switched to Ceftin and felt like I was making slow progress, until I had to go off the abx for a week before doing an LP. I never felt like I got back to where I was after that.

My IgM test from Igenex was indeterminate, I had 6 reactive bands 3 positives and 3 indeterminates. But many of the bands that I reacted to were lyme specific bands. This along with the fact that I have almost every symptom associated with lyme made me even more sure. I had tingling, joint pain, slight Bells palsy etc- all these things going on for a few years, but until I couldn't drive anymore I didn't stop and take notice that I was really not well. I could not find an LLMD in the twin cities who would treat me and since my issues are predominately CNS I knew what I needed were high dose orals or I.V. I have finally found an llmd about 3 hours from where I live and I am on high dose oral. I hope to avoid IV, but as I mentioned I lost my job a month ago, have two little boys, and I need my life back as quickly as possible. I feel like I am making slow, but steady progess. I have considered the natural route, and I have already decided that when I go off abx I will add in Dr. Jernigans products as I hope never to have to go through this hell again.

I hope this helps and I hope you figure out what is causing your illness. The nice thing about testing at Igenex is that first of all it is not too expensive to do just the lyme western blot ($95 a piece for the IgM and IgG-you have to do both and you have to pay, but some insurance companies will reimburse) You do not have to go to an llmd to do this test. You can call Igenex and they will send you the kit for free then your PCP can sign off on it and draw the blood. You may get a No and people do-or you may be like peregrine and after years of suffering get a glaring yes and then you have your answer. Dr. Harris at Igenex is very good about calling back if you have questions on your results.

Hope this helps and I hope you find out what is causing your illness.


P.S. I am glad the dog gets to stay :cool:

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