Hi, for the past 17 months I've visited Dr after Dr with no definite answers. My symptoms include upper left quadrant fullness, pain in my forearms, hands, lower legs and feet. The pain is worse at night and is burning and throbbing but sometimes electric shock like. My muscels twitch everywhere all the time, but also worse at night. Even my face twitches.Tested negative for lupus, rheumatoid arthritis, lymes, hiv, mono, cmv and syphilis. The middle of my back always aches and burns also much worse at night. Have had a lymph node at the base of my skull on the right that swells and then goes away and swells again. My temerature stay 100.3-101.7 ever since this started. The only lab result that showed up abnormal is my lactic acid level which I was tole shouldn't be above 2.2, is 4.5. Any suggestions would be appreciated. Thanks for all you do.
Unfortunately, lots of people with Lyme test negative on standard blood tests. The CDC says that a negative test does not exclude Lyme. There is a specialty lab in CA called IGeneX that does more advanced testing. You could try a Western Blot test there to see what it says. (I was negative on a screening tests and positive in my IGeneX WB.)
There is another test of the CD57 immune cell that can be helpful. Only AIDS and Lyme are known to lower this cell count.
In the meantime, you could try taking 500-600mg of magnesium supplements a day, and take warm baths with a couple cups of epsom salt for 20 minutes. Lyme causes magnesium deficiency which can exacerbate neuro and heart symptoms and cause miscle twitching, especially in the face. If a week or two of magnesium helps these symptoms, that could also be a clue.
I like to watch that show called Mystery Diagnosis on the Medical Channel. Sure sounds like that is what your diagnosis is. You need to try a different hospital with specialists. I don't know where you live. I am from up North and like we have the Mayo Clinic where all the specialists are. Maybe you have a place like that somewhere near you. I hope things turn around for you. I am sure there is a answer for what you got. You just have to find that right doctor who knows or has seen what you have before. Do get well soon. Don't ever give up and something good will happen soon.
I am a nurse in a rural health clinic. I have seen similar symptoms in the past, and the patients test negative for lyme disease but end up having Ehrlichiosis -which is also transmitted by ticks. Its a shot in the dark but you may ask to be tested.
Thanks a lot for the information. I'm headed to get more labs drawn in the AM and I will definetly mention these. I'm just so ready to have this done and over with! How long did you have to wait for your lymes diagnosis? Do you remember getting a tick bite???
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