MAV + MDDS + New diagnosis!

I finally received a new diagnosis today that I believe is an answer to a long, rocky, dizzy 2 1/2 year journey.

I have been diagnosed with lyme disease.

Believe me, this is the last thing I ever thought I would have, but after learning about it from others and recognizing that I had much of the same symptoms, I got tested.

I have had MAV since I was 11 years old, I am now 32. So, I have lived with this much of my life but recognized there was something different after having my daughter in 2010.

I saw a top neurologist at UCLA that dx me with spontaneous Mdds but didn’t explain my other symptoms.

I am not sure when I got lyme, how I got it, if I got it as a child even which gave me Mav- who knows?

The important thing is I have an answer and I will be fighting both, well all 3 problems.

did u have a positive blood test? what testing did you have done? good luck i hope you feel better soon!

Glad u found answers!!! I too believe I have lyme, as I was bitten by a tick. It presented the bulls eye rash. I never thought much of it at the time. But 6 months later, it began with the eye floaters, then IBS, then BAM…chronic MAV and mdds, that has not stopped for a yr now. I had a simple Ab test done which was negative, I dont buy it. I am going to insist on a western blot and maybe the ingenx lab. How where u diagnosed?

Lisa

Yes, please fill us in on the details! So glad you finally have an answer. How were you diagnosed? What will be your treatment and for how long? I think lyme may be lurking in more of us than we think. I am certainly being more and more convinced to ignore my doctors and pursue this independently. Have to start saving money!

Wow another person with Lyme! I hope you get the right treatment to get you well! x

I have spent a lot of time thinking about this as it seems so many are getting diagnosed with Lyme. Could it be possible, the strict definition of MAV with episodic vertigo is actually true and all these MAV specialists are wrong about chronic symptoms? Do all of us with chronic symptoms and no relief actually have Lyme? It is beginning to seem that way. What does everyone think? My docs continue to insist that Lyme cannot be chronic and don’t want to even hear what I share on the forum. Thanks everyone!

I have chronic mav that definitely started after a barotrauma- no lyme involvement. Last summer I started to get achiness all over and thought perhaps that may be lyme- around this time my balance also got way worse. Treated for lyme, achiness went away- no change in balance. At this point I don’t think my (potential) case of lyme has impacted my chronic mav.

it also seems like those with lyme have neuro symptoms that are unusual for mav???

Sarah - it is oftentimes much less of a challenge to get rid of arthritic symptoms than neuro Lyme symptoms especially if the neuro symptoms are caused by a coinfection and not Lyme only. Those that I know who had MAV symptoms and recovered, didn’t obtain symptom relief until (on average) 6 months after addressing all coinfections.

I did not have typical episodic vertigo and my Dr. diagnosed MAV. I had dizziness, but not room spinning dizziness. I’m really posting to find out what “air hunger” is???

Thank you everyone. It’s been a tough journey as many of you can relate. The 24/7 rockiness is awful along with the other symptoms we deal with daily.

I’ve had 4 tests total. 3 results so far-

The first two are the “standard” tests that have many false negatives. I was not surprised they came back negative.
ELISA- negative
Western Blot- negative

Igenex-Positive
ispot- still waiting results. They test to see if they can grow lyme from your blood culture.

If you are going to get tested for lyme, please make sure you go to a “lyme literate medical doctor” (llmd) and I recommend skipping the first 2 and just doing the igenex which has been more successful since it tests more bands of lyme.

Beautifully Broken/Lisa- please do the igenex test! From what I’ve been researching, lyme attacks your weakest system and that must be our vestibular system. Find a LLMD and do the igenex, skip the other two. The igenex was $260 but your insurance might pay for it? There is also a lyme website that refund people who qualify financially.

I find out what treatment is on Tuesday but will stay on the topamax which has help my mav tremendously. No attacks since being on it, just the rocking, brain fog, neck pain, etc.

I now wonder, what came first? The chicken or the egg? Did I get lyme as a little girl and that gave me mav? Or, did I have mav and get lyme later? That is the million dollar question. I am ready to fight and get well. Bring it!

Very best of luck.