Could it be Lyme?

[ehbeedub]

Hi all,

I have been having strange symptoms for quite some time now, and I'm wondering if it could be Lyme-related.

I'm unsure if they are related at all, but I have been getting strange skin rashes for about 3 years now. They usually flare up once or twice a year and subside in about 10 days. They're always diagnosed as allergies, but I recently had allergy testing and was only reactive with typical outdoor things (pollen, grass, etc).

In February, I started experiencing intense lower back pain and pain in the left leg, which eventually spread to my left arm and right leg, but it is still worst in the left leg. It feels like nerve pains, though recently my left knee has been achey and sore, and my shoulders have also been getting in on that action, though less frequently. I occasionally have nerve pain on the left side of my face, as well. I experience strange parasthesias -- hot/cold sensations, feeling like water is running down my leg.

I had a nerve conduction test that showed nerve damage in the left leg and left arm, and an MRI that was normal excerpt for a single lesion. I was worked up for MS, but given that there was only the single lesion, the doctor recommended I wait to be treated and come back in a few months.

I had a Lyme test done back in March, but I'm not really familiar with the tests for this. This is what the results looked like:

Lyme Disease, EIA W/RFL WB = .77 (negative)
Lyme Disease AB (IGG), WB = Negative, only band 41 was reactive.

Any thoughts?

[cave76]

Best of luck to you----- and I'm happy to see you're being active in your search.

If you've found a doctor you think might work, would you please private message me? There are Lyme doctors and then there are Lyme doctors, if you know what I mean. Although I don't live on the East coast I have tentacles everywhere with other science based thinkers. (grin)

p.s. One of my unfinished projects is to post a thread about why the term LLMD is becoming less and less the gold standard than it was 'back in the day' when they were regarded as our saviors. There are still many doctors who still deserve that nick-name but there are almost as many who do not, in my opinion.
The same is happening with the moniker ' an ILADS doctor'. But that does NOT detract from the web site and it's worth----- just with the types of doctors that can now say, truthfully, "I'm an ILADS member".

[ehbeedub]

Thanks again for all of the info -- wading through it slowly but surely! I obviously have a lot of reading to do, but it seems like some of my symptoms are certainly consistent, so I feel like it's worth pursuing.

I spoke to Igenex, and it seems like the first step is finding a doctor willing to requisition the tests for me, so I'll do my best to find an appropriate doctor.

I'll be sure to let you know if I have any other questions, and I'll try to follow up here if anything comes of it, but who knows how long it will be before I can actually be seen, etc.

[cave76]

About the costs of tests from Igenex----- Since my insurance always paid for them I didn't 'worry' about the cost----- and those were a long time ago anyway. And btw---- I was always negative! But I started treatment anyway because of 'high suspicion'. Which was later proved correct via lumbar puncture/spinal tap. I'M NOT ADVISING PEOPLE TO GET A LUMBAR PUNCTURE! Just saying I got 'lucky' and got a positive after just one.

The best way is to call Igenex---- they have an 800 number and I've always found that they are willing to give information over the phone.

Nick Harris, owner, has always, in the past, been willing to talk to people when he's in and when he has the time. But some technical info can be given by the lab manager also.

Labs are forbidden by law to give treatment advice, I'm sure you know.

[cave76]

You think THAT'S a lot of information??? LOL Just started---- and not just because I'm gabby but because Lyme and co-infections (which we haven't even touched yet!) is so very complicated. Complicated even more because of the Lyme Wars.

Back to your main quest------ a good Lyme doctor: One of the best just re-opened his practice in CT. Yeah, I know, not in NY but not that far from it.

I imagine he already has a long waiting list but I'd put my name on it while exploring other doctors

http://www.theridgefieldpress.com/20415/lyme-disease-doctor-dancing-veterans-bank-executive/

While you're waiting---- please pick up a copy of Cure Unknown by Pam Weintraub and read the best book there is about Lyme. She researched, verified and double verified everything she wrote as the responsible writer she is should do.
Her web site is http://www.astralgia.com/f

This web site that gives the telephone numbers of many support groups in NY might be a resource for you and might have the name of a good Lyme specialist:
http://www.empirestatelymediseaseassociation.org/

But it's a form of 'buyer beware' that I have to warn you that there are many Lyme specialists that I wouldn't send anyone to. You would have to ask a person who has no agenda except for science-based medicine. Unless, of course, you want to be treated by some rather ineffective methods (in my opinion of course---- that's MY agenda!)

[ehbeedub]

Wow, so much information.

How can I find a decent Lyme doctor in the city? I've seen things about how many of them don't take insurance, etc, so I'm assuming again that this will be costly.

Do you know the approximate cost of the tests that would be ordered for a case like mine? I'm completely overwhelmed here, and have no idea how to proceed.

[cave76]

"Actually, I just also remembered that my dog was treated for Lyme last year. He was never officially diagnosed but was having strange neurological symptoms, and responded well to Lyme treatment."

Have to smile, ironically! Yesterday I was reading articles/comments by veterinarians about Lyme disease. Bottom line---- vets aren't involved in this nasty  war about Lyme that doctors are. They treat, the animal gets better. If not, they treat again. No persecutions of vets that treat often and long!

I went to a site:
http://www.capcvet.org/parasite-prevalence-maps/
[about Lyme in dogs]

The HUGE irony about that map is the high risk shown for Lyme in OR for dogs!
While a human can't find a doctor that will treat longer than 10-30 days and only if they have a bulls eye! I know that for a fact!

Maybe Oregonians should grow shaggy hair and long tails!

{I'm glad your dog is better}