Lyme and MAV

Hi everyone. This is my first post. This is a wonderful board full of info. I have had MAV for 6 weeks and counting. At first I had one severe vertigo, room spinning attack and felt totally off balance. Now, I have vertigo like sensations - feel like I’m spinning and dizziness 24/7. Still feel off balance. And I do have headaches.

And I have visual stuff too - can be set off just by looking at stuff. Stores are awful. Have light sensitivity. I had two hopeful days last week but it came right back. This week has been awful. I had a normal VNG test and rotary chair test so they told me MAV.

I have had headaches for many years - always called them tension headaches. And I also thought they were lyme headaches as well. I do not have a family history of migraine. Personally, I had one migraine - an ocular migraine - two years ago.

I have been treating lyme and co-infections off and on for a few years. Someone told me that my MAV may be due to the lyme. So my lyme doc put me back on doxy. I have a neurology appt. in January for the MAV. I have been on the migraine diet for two weeks and don’t know if it is helping any.

I have been trying to curb my anxiety as that makes this super bad and I owe it to everyone on this board who has helped with that. Reading your success stories has been very helpful.

I think what I am going to do is treat my lyme for a few weeks and then add in a migraine preventive. My GP can prescribe it since the neuro can’t see me yet. I was thinking of starting with Nori.

One piece of advice I was given was that lyme may be causing this for me but it won’t go away if I don’t get the migraine turned off.

Does anyone here have MAV and also just happen to have lyme as well?

I appreciate all opinions on my situation. Thanks so much.

Julie

Julie, was your lyme recent or is it a diagnosis of lyme that is still there from years ago? Was it diagnosed by a private dr.? I dont know if you are in the UK. It cost me a lot of money in the past to be told within 5 minutes of a phone call from a private dr. that my symptoms were all due to lymes. I sent off blood on slides which were looked at through a giant microscope and I was told I had lymes and co infections and was treated with antibiotics for months. None of it worked. I did get a test on the NHS separately which showed no sign although I know the private docs are saying it wont show up etc. This dr. has now been struck off.

Christine

My lyme and co-infections were diagnosed via a Western Blot test by my doc a few years ago. I’m in the USA. I’ve heard from a few people that treating lyme did not get rid of their vertigo and that the best success was treating the lyme and MAV so that’s probably what I’m going to do. Some also told me that their lyme probably wasn’t treated long enough and that it could be the co-infection babesia causing this as well.

So hard to know. The blood test thing you had done - I don’t know how reliable that is. And what lyme treatment did you do?

So, Christine, are you feeling better? What did you take to treat MAV?

Thats interesting as it was the co infection babesia that I was told I had too. I have been told I have ME (CFS) and seeing as thats just a name as far as I am concerned for lots of people who have a list of similar symptoms I was looking for answers.
The lyme treatment was high amoxy plus metrodinazole. I didnt continue for very long, couldnt tolerate high dose antibiotics, I dont feel I have lymes. Yours may be different. I believe the Western Blot Test is more reliable. The private doc I was with said I may have been bitten by a tic when I was a teenager and lived in Cyprus for 3 years. I dont remember any bite that gave the circular rash. The MAV and probably ear problems give a set of symptoms that cross over with the CFS diagnosis.
I dont tolerate the preventatives easily, I have tried over 20. Just about to try one I did years ago.

Christine

Hi Julie…I have been treated for Lyme and MAV … I had neurological Lyme disease and was treated by six months of daily iv antibiotics (rocephin). It was not fun and although it seemed to help a bit…the end result was not much better… My Lyme treatment was about 8 years ago and was considered pretty radical, but my drs okayed it…so I would say that the Lyme has probably been a concurrent disease to MAV but don’t believe it caused it…my medical history is very complicated however as I also had an MS diagnosis from my doctors at johns Hopkins in Baltimore… So … Who knows? Hope you are able to unravel your symptoms and get proper treatment . I am doing so, but it is a day to day struggle!

Thank you Dee for sharing your experience. Did you have only lyme or also co-infections? I have heard babesia may cause this. And I also believe that it’s possible for MAV to be occurring simultaneously as lyme. I’m sorry that treating lyme did not fix this problem for you. But that is a story I’ve heard a lot. May I ask what you took to treat the MAV - what worked the best for you?

I did not have any coinfections…only lyme…at this point i am taking 80 mg verapamil, 1mg klonopin twice a day , 50 mg zoloft and 100 mg of neurontin as needed… i will be getting yet another opinion at duke in a few weeks as i have had minimal improvement… don’t mean to sound like debbie downer, lol! My understanding is the cocktail of meds is different for everyone…good luck to yo, keep in touch! Dee