A member of this forum suggested lyme disease could be the cause of my 6 months headache, which specifically causes burning on the top of my head just under the skull. I also have hair loss (normal thyroid test results) and some mild tmj symptoms, usually soreness at the temple area and sometimes facial numbness and tingling. The neurologist thinks my jaw problem is not releated to the head pain/burning. Last december I did have a rash in the abdominal area that went away with cortisone cream. It was extremely itchy so I don't think it was a tick bite. Can anyone with lyme relate to this. I have no idea why the headache started and so far drugs and chiropratic treatments are not helping.
Posted by NP40 (Member # 6711) on :
Lyme is certainly in the realm of possibility for you, but so are many other things.
Perhaps, you could be tested by Igenex ? Maybe your doc can prescribe a 30 day regimen of abx to see your reaction to it ? Normally, lymies feel worse initially on abx.
Posted by Michelle M (Member # 7200) on :
Headache (of the relentless kind!!!) was my presenting symptom of Lyme...LONG after I'd filed the tickbite and rash away under 'silly thing, Lyme doesn't happen if you live in California.'
So it's certainly possible, especially with the TMJ type pain.
A trial of antibiotics would be a good choice, as NP40 suggests. Like at least 400 mg a day of doxycycline. (Your neuro will probably suggest less but lobby for at least this amount.)
It's NOT gonna kill you (despite what your neuro thinks) and if you do have Lyme, it will probably bring on a herxheimer reaction - i.e., you'll feel like crap and your headache will probably get worse (from dying bacteria & toxins).
At that point, perhaps you can suggest having your neuro sign an authorization for an IGeneX test - the IgG and IgM panel. Send off for it yourself. Post your results here since your neuro is likely to under-interpret or completely misinterpret the results.
Then perhaps an LLMD would be in order.
People with headaches of long duration also really need an MRI..not because it rules out Lyme (which it doesn't), but to rule out other brain problems. Have you had an MRI?
Hope relief is in sight for you. 'Bad head days' are NO FUN.
Michelle
Posted by smercer (Member # 8276) on :
Yes, I did have an MRI which was normal. My neurologist feels lyme disease is pretty far fetched. I plan on bringing it up again with my family doctor. I have just found out a neighbour was tested for it and a mother at our school did actually have it. I don't this it's as unheard of in our area as the doctors think. My neighbour's doctor, on the other hand, was the one who suggested the test but most don't seem to think its a problem. By the way, the neighbour who was tested had tingling and numbness in his hands but he ended up being diabetic.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by smercer: I don't this it's as unheard of in our area as the doctors think.
You're exactly right! We have alot of Canadians here.
Posted by Carol in PA (Member # 5338) on :
Smercer: Hi, I'm glad you decided to check out LymeNet. The neurologist who advised you at the other health board, didn't even consider Lyme Disease.
The symptoms you listed there were all symptoms of Lyme. The fact that a neurologist at a prominent medical center was unable to figure this out says alot about the sad state of our medical system. And it helps to explain why so many Lyme patients are misdiagnosed for so many years.
You will need to do alot of reading to educate yourself about Lyme. This is important so that you'll be able to make good choices when your doctors advise you.
As you begin to absorb some of the information, feel free to ask questions.
Try to read as many of the daily posts as you can. When I first came here, I read for seven weeks before I even registered. I learned so much!
Good luck with your journey of discovery. Carol
Posted by smercer (Member # 8276) on :
Thanks Carol, you were the one who made the suggestion at the other forum I mentioned!
Posted by johnlyme1 (Member # 7343) on :
Way to go Carol!!!! She is correct - I had the same symptoms that you did. to0 of the head , jaw pain, tingleing in the face and so on. After my 1st run of doxy all subsided.