Ha ha sorry Rob! I seriously doubt I have it…migraine is alot more common and likely. Olus I have a huge family history of migraine. Plus from what I’ve read and researched, the vast majority of those with chronic lyme disease have severe joint pain and many other symptoms besides vertigo, but who knows!!! Maybe…
How do you get tested for lyme?
Here is what that guy I mentioned said about Lyme in one of his posts:
I suggest you look at some of my other posts. Many on here I think are ignoring them…but I encourage everyone to consider Lyme and related co-infections (particularly Babesia and Bartonella) as players in your conditions.
You’ve probably been tested for lyme and told you didn’t have it. BIG DEAL. Are you aware the tests miss 9 out of 10 lyme cases? I originally tested negative and was told I had Labyrinthitis and anxiety. Meanwhile I had all of the twitching, tingling, numbness you describe.
MRI’s of the brain are often normal with lyme. If they happen to be Abnormal, you often see MS-like Lesions and some atrophy. If your MRI was normal, I suggest getting a brain SPECT scan which shows brain function (as compared to an MRI which shows structure.) SPECT scans are very useful to detect lyme. Almost everyone has hypoperfusion (low blood flow) in the brain due to inflammation / swelling.
To reiterate…most doctors don’t know squat about lyme. They will give you a standard blood test and if it is negative, will tell you you don’t have it. If you do test positive, they will only treat you for 21 days typically which isn’t enough.
YOu need to find an ILADS (www.igenex.com). ONly an LLMD can properly rule out, or diagnose, lyme and related co-infections.
If you want to learn more, I suggest reading the following:
Dr Burrascano’s Treatment Guidelines (The Bible of Lyme treatment…note the Symptoms a few pages in…how many do you have? (or have you had?) ilads.org/lyme_disease/B_gui … _17_08.pdf
Also watch the Oscar-nominated film “Under Our Skin” about lyme. See patients like us describing what you describe…years of illness, no progress, cluless doctors, before finding out what the real problem was. Avaialbe for free on Hulu…also on Netflix and iTunes.
Tell your story on Lymenet (flash.lymenet.org Medical Questions.)
I’ve had every symptom you describe. I"ve been treating lyme for 18 months and am 95% recovered. My dizziness is gone, as is the tingling, etc.
Be well…
Thanks so much for finding this Jem. It’s really helpful to see. I just do not know. I’m thinking I might, might fork out for tests via a private hospital I’ve found in Hertfordshire, The Brakespeare Medical Group, think it’s about £1000 though…I just don’t know if it’s worth it. It’s hard to know what is best. I guess we could request an NHS test via our GPs but from the sounds of things they are usually ngeative regardless. I know alot of people say accpeting the migraine diagnosis is part of the recovery from MAV and for me, personally I’m 99% sure that’s what I have…but I have improved on atibiotics so there’s a niggline doubt, but I’m not sure it’s one worth £1000!!! :?
Lyme symptoms seem to be very similar to MAV