Just wondering if anyone else is plagued by this. Going on eleven times in just over a year. Anyone have any ideas or wondering if IV abx help with this part. I haven't started treatment yet still waiting for blood results.
Posted by 1tick3victims (Member # 7445) on :
Gosh, you've had a pad patch with this AWFUL side effect of lyme.
I've only had two bouts with meningitis , the first bacterial the second viral. Although I then had another brain infection that led to Guillan- Barre syndrom. Not fun.
I am on IV antibitics for 2 months, so don't really know if it is helping.
I hope that you get some releif soon. I know that it is a common side effect of lyme.
Do you have an lllmd yet? Highly recommended, even without your blood tests, I would look into this becaue waiting list can be long - and lyme can be a clinical diagnosis and you certainly have significant lyme symptoms. Hope you get some releif soon.
Posted by groovy2 (Member # 6304) on :
Hi Niki I had it non stop for 18 years-- After abx for 18 months it is mostily gone--I hope--Jay--
Posted by niki (Member # 7720) on :
Thanks for your replies, It is so helpful to know other people can actually relate to my pain. I am seeing a Infectious disease doctor who specializes in Chronic fatigue in Kansas City. Treats most of his patients with clostrum formulas. He is the one doing the blood work through Igenix. And I just checked and Everything you want to know.. is ready for me at the library how cool. My reg doctor wants me to see a Neurologiosts as well. Not ready to do that yet I've had so many wrong diagnosis from specialist in the last ten years that I spend a week researching only to be called back with the infamous Oh blood works fine eveerythings ok. I have found a llmd Dr C in spingfield MO which is only a ccouple of hours away. Do I need to go there or is it ok to continue with my ID doc I really like him and he is listed on alot of conferences speaking at the sametime with the lyme specialist. Now I am already tired of hearing oh you are not sick enough to have lyme. I have read just enough about lyme to have lots more questions. My biggest concern at the moment is I read that the LYme is one of the things that can cross the placenta barrier and I have had three children since I belive I contacted lyme. Any thoughts on this. thanks niki
Posted by seibertneurolyme (Member # 6416) on :
Niki,
So sorry to hear how sick you have been.
Hubby does see Dr C in Missouri. If you can't make the trip or if you want to stay with your current doctor, why not have him call Dr C for consultation.
Don't know if he charges a fee for this, but he seems very willing to help educate other doctors and he does require that you have a local primary care doctor even if he is your LLMD.
Hubby has had many crazy symptoms, but thankfully he has never actually had meningitis unless that was what he had when he was in the hospital in Kansas City and the neuro's said not Lyme despite prior positive tests from both IgeneX and MDL.
Even if you have a negative test from IgeneX that does not mean you do not have Lyme. No test is 100% or even close.
The COQ10 (yes I know it is expensive) and the essential fatty acids would be the best places to start and should help with your illness even if you do not have Lyme.
Don't know if you have been tested for coinfections -- babesia and bartonella etc are almost as common as Lyme. It is very unusual to only have Lyme.
You might want to post another question titled something like "Did my kids get Lyme thru pregnancy?"
There are others here who could answer that question better than me. If the kids have any physical symptoms or learning difficulties etc include that info in your post.