Lyme Disease Support Group

It started in June of this year with numbness & tingling in his hand/arm on right side of body and we noticed his balance and coordination was suffering. He has had several MRI’s and a CAT SCAN along with extensive blood work (2 lymes tests) and a spinal tap. This has been going on all summer and getting referred from Dr. to Dr. He has since been to a neurologist at Froedtert Hospital in Milwaukee WI. All of his tests (blood, spinal tap, MRI) have come back clean. The only thing that DID come up is when running a “15 ban” Lyme Test 3 out of the 15 came back positive. The neurologist “got in touch” with a specialist infectious doctor and they said “NO it is not Lymes, and we are not treating you for it” Why would 3 come back positive??

In the mean time my brother is out of work. (He is otherwise a healthy 39 year old carpenter) He is walking with a walker, numb on his right side of body including that side of his face impairing some slurred speech. His stance is wide and his balance is very clumsy. (His hand also is pulling to one side) Also some headaches and tiredness. All of these symptoms are listed as classic lymes disease, yet they will not treat him. I understand it is hard to diagnose and some can only be diagnosed through clinical diagnosis only.

It seems like doctors do not like to diagnosis Lyme’s Disease because it is expensive to treat the insurance companies don’t like it. I need your help in finding an aggressive doctor in treating my brother. Any information you can give me is MUCH appreciated.

Thanks for listening. I NEED A LLMD THAT'S GOOD IN WI

If you PM Jaime1978 she might have a list of Dr's in Wisconsin. Many of us have had similar symptoms as your brother's so it sounds like you are on the right track.

It is great that you are stepping in to help him. Just having someone believe you is so important.

Good luck to your brother!

I'm going to PM you one that I know of since Jamie is recovering from surgery.

Denise

Wolfpack

I'm so sorry about your brother. I'm glad he has you to help him. Wolfpack mentioned a good place to get a doctor's referral. You can also go to ilads.org which is a professional organization for lyme doctors with some extra training.

Also, it's hard to answer the question on the lyme test (I assume western blot? Elisa?) but if it was the western blot, CDC positive (the point at which the CDC declares you have lyme disease by blood test alone) requires, I believe 5 bands or 2 (depends on which test)to be positive.

Lyme disease, however, should be a clinical diagnosis. If somebody tests positive for it on a western blot, then they are diagnosed with it, but that is not necessary.

It's very important to go to an MD with extra lyme training initially. The diagnosis is very important and a good lyme doctor should know what to look for. Be aware, not all doctors who are recommded are that great so tell you brother to use common sense. If something seems out of place, it probably is.

I hope something I wrote helps you in some way. Good luck to your brother and you are a great sister!

I live in Lake VIlla, IL border of Wi, and there is no one up my way that I can think of...If I do I will let you know ASAP....

I woke up with the same thing your brother has, the tingling, burning feeling flu, you name it I woke up one day with it all...After 6 months of treatment I am doing 99.9% better...There is hope, you will find someone to treat him...

I wish you luck

Julie