Lyme Disease Support Group

Hi Everyone,

I need to ask some questions to see if you think I may have lyme disease. All of my symptoms started back in September. I never saw a tick or rash on my body. It all started with a low grade fever and muscle pain and fatigue. They tested me for Lyme through a blood test about a month after I had these symptoms and the test came back negative (I am not sure which test they did). I went through tons of blood tests, MRI's and nerve tests and all came back normal. In January I was diagnosed with fibromyalgia because of the muscle pain. At the beginning of April, I started feeling lightheaded and had alot of pressure in my head, jaw, and sinuses. I have been feeling this way ever since. It comes and goes, but I get tingling in my face, numbness and all of this makes me feel nauseous. I also feel off balance alot and have difficulty concentrating at times.

So my question is: Could this be Lyme Disease and if so, what type of test should I ask my doctor to administer? I go to see a new nuerologist in one week. Any help would be appreciateed!

Lori

Hi Lori, from what i remember (correct me here if i am wrong) that you can get a negative result if it is too soon for the infection to show. ELISA tests are nortorious for false neg and pos. I have had only Western Blots and would highly recommend them. I would ask to be retested. If you get the usual...blah blah blah, DEMAND to be retested. you have been experiencing symptoms too long and may be headed towards the next two stages when it becomes more difficult to erradicate the infection. As i have stated before, i am a little rusty with my information cause i kinda gave up trying to get someone to realize that i am still not normal!!! I know that everyone here is terrific with information. Keep fighting for that test!! I wish you the best and good luck and please keep us all posted!!

Teri P.S. i never had the rash and never saw a tick!! Mine was found in the third stage.

Could you tell me if my symptoms are consistent with lyme disease? did you experience these symptoms? What are the treatments for lyme disease?

I would say that your symptoms really do sound like Lyme. Most of us were undiagnosed and/or misdiagnosed for many years because the testing is basically crap. You really need to have someone test you through Igenex Labs. They have a decent track record and a good reputation! I was misdiagnosed for over 20 years. We all have similar stories on here.

www.igenex.com

You can order a test kit there and have your doctor administer it. It's a bit pricey but worth every penny because it's a better test.

Good luck!

Oh, treatments vary. Check out some sites:

www.chroniclymedisease.com

www.truthaboutlymedisease.com

Lori,

I would agree that your symptoms sound very Lyme possible. I would get tested again (Igenex Labs if possible). Western Blot is what they use, the ELISA tests are basically worthless.

Keep attention to yourself on new symptoms, as Lyme progresses more may come... like joint pain, that tingling... I get it on the souls of my feet (it hurts), constant headache mine can last 3 or 4 days without a break, my skin itches lots (high CU index), etc...

Read and study as much as you can about Lyme (and symptoms), it helps.

If your current Doctors won't listen look for a LLMD (Lime Literate Medical Doctor). People on this form can help you look for one if you need it. I have to head 8 hours to an out of state location for an LLMD. (I will be leaving for my first apt in the next couple of weeks.)

Best of luck,

Bob

Thanks for all of your information! It is very helpful! I already contacted Ingenix Lab and they are sending me a test kit and price list (still haven't received it yet). I will definitely ask my new doctor about getting re-tested to make sure it isn't lyme disease. It is definitely a scary thing to go through, but I think the more I learn about it, the better I will be.

Ok, I went out to my mailbox and TaDa! The test kit and price list from Ingenix was there. Now I have a few questions about it. First, which of the tests on the test sheet should I order? There are so many tests and I don't know which one to order. Also, could I get a western blot test through somewhere else, so that my insurance will pay for it? It is very pricey and I don't have too much money right now.

Hi:

I had some of them and I have lyme...But a friend of mine has the same and she does not have lyme and no reason to think she does...So its a hard questions to answer. I sometimes think we tend to blame every little thing we feel on lyme when in fact something else is going on. At least you got your kit and will know the answer soon

I don't have the sheet in front of me, but I know all mine were over 1,000 and my insurance gave us back 750 of it, but we had to pay up front. I had the western blot and all the co-infections done

I'm responding on my husband's site (don't want to get double the info on our emails). My husband and I were both diagnosed early last year with late stage neurological lyme's. He had very severe symptoms ranging from balance difficulty, rheumatoid arthritis-like conditions, brain fog, fibromyalgia, just to name a few. After he tested positive for lyme and co-infections, while I was researching lyme I noticed I had a few signs which I contributed to being older (52). His LLMD recommended I be tested and sure enough I was positive for the same stuff. We know his exposure to a deer tick was in June "01 and the doc in KC, MO said they didn't have lyme's and threw away the tick and only put my husband on doxy for 2 weeks. His conditions cascaded, seeing many MDs, being blown off to check for lyme until last year. I am much like you are. I don't ever recall having a tick exposure, never had the bulls-eye rash, but some symptoms included 4 years of ribs pain, tingling in the face that would come and go, numbness that shifted around didn't body parts for short period of times, slight balance trouble, difficulty concentrating, roaming joint pain, muscle weakness and many other symptoms that would come and go over the past few years.

Our LLMD uses Igenex labs. From what I understand they are the most reliable.....however, even our LLMD said based on the cycle of the bacteria growth a lyme infected person can still have negative results.....our doctor also treats according to existing symptoms and has a great deal of respect for Dr Burrascano treatment protocol for lyme and associated illnesses.

Another very important aspect of our healing has been to reduce yeast overgrowth in our systems which cause neurotoxins (from too much sugar originally and now from antibiotics and sugar) I can honestly say I have a big sweet tooth, but have completely changed my eating in order to get completely healthy again.....we are ever gluten free and lactose (casiene) free too. This eating style has helped tremendously.

We both have pic lines in to deliver antibiotics now after plateauing with oral antibiotics for many months....we're both feeling remarkably better.

Sorry this is sooooo wordy, but I seldom write and want all lymies and potential lymies to get better

Best of luck with your search for the right doctor.

Suzie