For in Orlando - Re: Lyme's Disease or RA or both?

[Guest guest]

Dear ,

>>>WOW! You have just related my husband's fight with what we believe to be

Lyme Disease. We are headed to the Mayo Clinic at the end of this month

because no doctor here in Orlando will diagnose him.<<<

Have you tried the Lyme's Literate doctor referral service provided at the

ILADS website?

www.LymeDiseaseAssociation.org

Just click on " Doctor Referrals " either at the top of the page or under the

Information Menu. You will need to register at the site first before being

directed to the doctor locator. Although you may not find a Lyme's Literate doc

in

your zip code, you may be lucky to find one somewhere in Florida you can get

to. I drive a good hour to get to my doc, but it's only once a month and worth

it.

If you have no luck with this website and go to the Mayo clinic, make sure

you're armed with as much info as possible before you go. I joined a Lyme's

group for CT and you may find a support group for Florida where you'll get

some great insights. For instance, I've learned that most infectious diseases

doctors, though they may be " Lyme's Literate " , may still be bound by the usual

inadequate treatment guidelines. Most believe that the standard three weeks of

antibiotics eradicates the disease and chronic Lyme's just doesn't exist, so

you can't possibly have it anymore. Chronic Lyme's arthritis and the

neurological problems it creates are no joke and require long term treatment.

Also, if this helps....unfortunately the labs commonly used for Lyme's

testing are notoriously inaccurate much of the time and most docs don't test for

Lyme's co-infections, at all. So, my Lyme's specialist sent my bloodwork to a

lab

in California that specializes in Lyme's testing, called IGenex.

A lot of people are being misdiagnosed as not having Lyme's, because the

medical guidelines say there must be a positive ELISA and 5 bands positive on

the

Western Blot...in spite of the fact that it's generally acknowledged that

there is a small window of opportunity to test for antibodies, because the

Lyme's

bacterium is very clever and 'hides' in the cells. This is why this is such a

touchy subject for mainstream docs, who are so reliant on labwork and don't

trust formulating an opinion based on clinical diagnosis alone. Your hubby is a

landscaper, for instance, and would be more exposed than most people, so

hopefully it will be recognized that he has a higher risk factor than most. In

my

case, we live in a wooded area and have long-haired cats who sit on my lap all

the time...I'm constantly picking off tics even though I regularly douse them

with tic and flea oil. So, no surprise my rash appeared right on my

belly...but some people don't even get or notice a rash.

Btw....it's interesting that your hubby has been diagnosed with Hashimoto's,

which is autoimmune in nature. I was also been diagnosed with a multi-nodular

goiter caused by thyroid nodules, four months ago when all this started for

me.

I wish your husband well and will keep you both in my thoughts, . I

totally empathise with the pain he's experiencing and all the uncertainty

surrounding it. It's very hard on our partners to see us suffer with the pain

and

also to have to take on a greater load for us. Please do keep me informed as to

his progress and fingers crossed he finds an LLMD as soon as

possible...hopefully nearer to home.

Peace, n