The Lyme Disease Thread

[Rpm999]

ugh my god, i called and he doesn't use igenex anymore....what a joke already

[CarlaB]

What lab does he use? There are other TBD specialty labs.

[Rpm999]

i'll call again, what should i ask if they have? i just want to make sure it's the most accurate, but hey who doesn't

[CarlaB]

I would just ask what testing they use and from what lab. Then, research the lab ... we'll help.

[home-based-mom]

Here is a link to a short bio about a local television personality who was diagnosed with Lyme in 1995.

Pay attention especially to the second paragraph. That is nasty stuff!

Open Original Shared Link

I remember watching part of an interview a while back. She related that she went to bed feeling perfectly fine with no symptoms whatsoever and woke up paralyzed. I don't think she has any idea how she got the disease.

[CarlaB]

Thank you for posting that link. I have seen that .... she was on Good Morning America and now she has a blog at her news site. It's quite a dramatic story!

[Rpm999]

well i called the woman and she said she doesn't know, and i plan to go wednesday...she said they have/do various tests, so i should be fine right? they have specific testing in the whole place and like i said, he's had it many times so i should be fine...i hear he listens and tests for a lot, so what else do you think i should get tested for carla? because you said it sounds like i have neurotoxins and it can be many things, so just want to make sure...a full thyroid panel, check my adernals, metals, levels/minerals, fibroymyalgia, blood sugar (just in case)...what about candida/yeast, is that something that's a blood test or is it a stool test? i'm sure there's plenty of things, but i figure i want to get anything checked that can cause severe/strange neuro problems, so i can be sure...since he's supposed to listen and have a passion for it all, i figure i can kill 2 birds with 1 stone if i know what should be checked with all these symptoms

[CarlaB]

First, I should warn you, I'm herxing today and am slightly brain-dead,

I think your list looks pretty complete. Metals and Lyme would be what I would be concerned about. Be sure to get a copy of all your test results.

I don't know that there is an accurate test for candida ..... but I think the test that's out there is a stool test ... maybe someone else knows.

My LLMD tested me for adrenal fatigue (it was a test done on my saliva), metals, coinfections, hemoglobin, thyroid, CBC ... maybe there was more, but I don't remember.

I hope someone else jumps in here as all LLMD's seem to do things differently, so it would be good for you to have a lot of information to draw from.

Personally, I think something must cause fibro ... sometimes it's Lyme. And I would find out the name of the lab that runs the Lyme test ... it's important to know as they are not all alike. Your doctor may even appreciate learning about IGeneX if he doesn't use it as he sounds open to learning about Lyme.

[Rpm999]

ah thanks, sounds good...these neuro symptoms are just so complex and strange, i want to make i get things tested that need to, it's horrible just having the third person/out of body feeling and problems with your senses

[aprilh]

Ok, seeing a dr. Thursday and will talk to him about the lyme. Is it the CD57 test I need to make sure he does? at this point I don't know if he will use igenex, and I will ask for that one, but just in case.....

[dlp252]

The C.D57 test just measures the amount of certain "killer" (I think that's it, lol) cells...it's a useful tool which some doctors like to use. On the OMG thread, for those of us who have had the test done, it seems to accurately correspond with how bad our symptoms were. That isn't always the case I think, but several of us had the test done and at least with those on the thread, it accurately corresponded. Those who had the lowest number were having the most problems with the symptoms. I think I had one of the highest readings at 84. Most doctors like to see a score of at least 160 I think.

The Igenix testing will be the western blots, which will test for lyme.

[dlp252]

Here's a link to an article about the CD57 test, if it doesn't open to the correct page, the article is on page 8:

Open Original Shared Link

[CarlaB]

Not all LLMD's use the C D 57 ... mine doesn't.

[Rpm999]

i thought it was a good idea to right all my symptoms down since my memory is so shot, and wow, i'm going to have like 2 pages to show this guy

[CarlaB]

i thought it was a good idea to right all my symptoms down since my memory is so shot, and wow, i'm going to have like 2 pages to show this guy

:lol: Sounds about right!

[confusedks]

I just wanted to jump in and say about a yeast test.

My LLMD used a test called D-Arabinitol for Candidiasis (Candida) and it only came out in May of '07...I guess it's quite a breakthrough because like Carla said, there never used to be ways to really test for Candida/yeast.

He may or may not know about it...I don't know. It's a fairly new test, so don't be too disappointed if he doesn't know about it or doesn't use it, etc.

It's a saliva test. They gave me a kit and it was through BioHealth. You can google them.

[Rpm999]

ahh thank you, i'll ask about that...but before i go, i was wondering, is it possible if you have lyme or anything similiar, to have problems detoxing? just with how things have been, and still being sick from the dye, i'm wondering if my system is just not getting rid of what it needs to and making me nothing but worst

[CarlaB]

Yes, it is possible. There are a couple threads on this topic on Lymenet right now. I detox fine, but I know many don't. I don't know much about detox problems.

[Rpm999]

i give you and many others on here so much credit, i would have never guessed how hard sicknesses like these can be, it hits you like a bomb...i've gotten so much help on here, let's just hope this doctor is what people say because so many doctors just can't comprehend basic things, and when you feel your body getting worst and rotting away, you need the best of the best

[CarlaB]

I'm hopeful for you. I learned about what I had on here, so I stay on here and try to help others deal with doctors and diagnoses.

[aprilh]

rpm,

I have trouble detoxing. I don't know if I have lyme yet.

Kassandra,

I heard about that test on the biohealth radio show that Rachel posted. I want that test! I am going to ask for it when i go to this new dr thursday.

Everyone,

I am so nervous because this is going to be $550 out of pocket just for the first visit. That includes the dr. visit and labs. I Have already spent so much. My hubby would FREAK if he knew. We are low on money right now so I am going to have to charge it. I am sure there will be more tests on top of that considering I am having adrenal issues (i think) right now and have never been actually tested for metals. Just been going by my kids results. We would be exposed to the same things and they would get some through pregnancy as well.

I don't mind paying as long as we get somewhere! I really just have this feeling that something deeper is going on other than candida and heavy metals. So, I have got to do it......

April

[dlp252]

April, I think you're right...and it IS a lot of money out of pocket, but the money I spent for the LLMD was the best money ever spent because he has been one of the very few who could actually tell me what is wrong with certainty (with labs to back it up).

[AndreaB]

April,

Hope all goes well. We charged a lot of stuff this summer for LED treatments. When it's your health, sometimes you need to charge it.

[aprilh]

I feel the same way Andrea. My hubby doesn't necessarily agree, though. But, I gotta do this whether or not he agrees.

I wish I could find someone that does LED and ART here!!

[Rpm999]

well i went today, wasn't the best experience with the guy, but he tested for lyme...all he said was western blot, didn't specify, so i hope it was a good test...and free t3 & free t4, anybody know which specific thyroid things that'll show? anyways, he gave factive for a week, just to see how things are, anybody know/heard anything about it? i'm nervous taking it, just with how sick i am and how everythings bothering me, i feel so bad right now that one more bad reaction would just kill me