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Lyme Disease/Lyme related severe headache


diana clock wrote at 2010-05-26 19:42:36
we have had the same problems with our 14 year old son.  not diagnosed yet after 2 months of pain, head, stomach, all over body aches, sometimes worse than other times. Lyme disease is a very haunting experience for the body as we are finding out on our own. we live in OK and the ID dr. claims we do not have lyme disease here...nonsense the medical community needs to wake and help these people if they can

Cindi zanki wrote at 2010-10-18 16:13:59
Can you please tell me the name of the eye doctor in Lancaster I have lyme and migrains and my vision is getting worse. I would like to go to someone so caring in the feild.

Chris wrote at 2011-02-09 13:28:12
Thank you for posting this Carol. It was a great help. My daughter too has suffered from Lyme disease, now 12 years. Headaches return even after 7 months of IV antibiotics and numerous oral antibiotics not to even mention 11 different doctors.Brain scan did show both sides of her brain with Lyme and after the IV's the right side only cleared.I don't live far from Lancaster Pa. so I would love to know the neuro-ophthalmologist there.Thanks again. Chris

rainbow wrote at 2011-12-02 22:56:35
I agree with Carol about head-related issues caused by lyme.  Minocycline is the way to go.  I had massive herx first time on mino, I thought I was going to ER.  Second time, it was better.  Third time, it is clearing my head issues after two weeks.  I am at 100mg twice per day.  I will continue until I am symptom free...

brett wrote at 2012-05-31 21:29:50
Carbamazepine (Tegretol)  was the only thing and i mean the only thing   that helped my lyme headaches...hope that helps

Karen wrote at 2013-01-04 04:00:47
I would also like to see this doctor in Lancaster.  How do I send you my contact info?  Thanks, Karen

Lcagee wrote at 2013-09-21 18:59:22
Did anyones headaches ever go away? Mine have lasted a year. Related to tic but in time but all my tests negative. No one seems interested in trying abx but id try anything. Mri negative. Lp negative.  

Gena wrote at 2013-10-06 12:23:38
I would also like the name of this neuro opthamologist in Lancaster. My daughter is suffering from extremely painful migraines that have landed us in the ER twice this week. Says she feels as if her right eye is coming out of her head.  Been off the antibiotics for Lyme treatment for 6 months and headaches are back with a vengeance.

Cindy wrote at 2015-01-17 21:26:18
I need the Lancaster doctor's info too!  My 11 year old daughter is suffering.  Is Carol still here????

Lyme Disease

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I can answer questions about Lyme disease and recommend websites where one can find good, up-to-date information. I can also tell you how to find a Lyme specialist which is critical if you or anyone you know suspects that he or she may have Lyme disease. I can, also, provide you with a symptoms list.


I suffered for 2 years with a bad case of neurological Lyme disease & finished a 37-month course of antibiotics in March, 2007. I went undiagnosed for 2 years, & saw a total of 14 various doctors and 'ologists. I attended a two-day Lyme conference in the spring of 2005 and I keep myself current on the topic of Lyme disease. I quickly learned that YOU CAN HAVE A FLAMING CASE OF LYME DISEASE AND STILL HAVE NEGATIVE TEST RESULTS! It is essential for anyone who suspects that he/she may have Lyme disease to be tested for the co-infections that can occur with it. Only a Lyme specialist can perform these tests and make these diagnoses.

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