Lyme Disease Support Group

I have something physically wrong with me, although every single test that has been run has come back okay. Better than okay, actually.

The symptoms i have is a loss of equilibrium, sudden&severe anxiety attacks, random blurred vision (sometimes in both eyes or just one), heart palpitations, constant sweating of my underarms (even when it's 54 degrees), random stammering of speech, random mind blanks, dizziness, shortness of breath to the point of seeing spots(usually accompanied by palpitations), a vibrational "humming" feeling in my upper body (from one elbow, through chest down to other elbow) and head, random "weakness" feeling in my arms and legs.

These symptoms have been around for 4 years now. 3 years ago I went to my clinic in regards to the symptoms. I passed every test they threw at me. EEG, EKG, MRI, CTScan (with and without contrast), neurological testing, and all vestibular testing.

The thoughts at the time was Hypoglycemia, anxiety disorder and a damaged inner ear.

After tests were completed, I am not diabetic in any way, my inner ears are perfectly healthy, I have the heart of an athlete, clear lungs, very healthy brain function and all blood work was normal.

The clinic figured it was stress induced symptoms and prescribed me anti-depressants and anti-anxiety pills. The anti-depressants my body severely reacted to and outside of stopping the anxiety attacks.. the meds have no effect on my other symptoms. So I shut my mouth for 3 years.

This year the symptoms have reached a level of unbearable nature, so I went to the clinic again.. asking for a lyme test. I specifically requested a western blot test due to its accuracy. They ran the lyme reflex test and got a negative result on the ELISA test. Western Blot was never run. My PA-C prescribed me prozac and Meclizine (anti-nausea). Stating it was NOT lyme, refusing me a western blot test and blaming my symptoms on stress.

I wound up in the ER a week later. I requested (nearly begged) for a western blot testing for lyme, thoroughly explained why I believed to have lyme and why I believed ELISA won't pick it up in me. They said they would. After all blood tests at the hospital as well as neurological tests (again), all tests passed with flying colors. I waited a week for the test results for the blot and they told me the reflex results were negative and within normal parameters. I asked her what my titer readings were because it was supposed to be a western blot tests and she said she only had a reflex read out.

I need serious help here. I know something is wrong.

The hospitals contingency plan was for me to repeat every single test I have already passed.

Why won't they run Western Blot?

Is it possible that my symptoms are Lyme? If not, what could it be? I have analyzed the symptoms for the last 4 years and have exhausted every outlet I can think of. I am out of answers. Currently out of work due to this as well.

Hopefully someone can help me.

To have someone working with you, not dodging your requests. Best of luck in finding your doctor

i sent you a private messge left side with my welcome letter of good links/info.

i bolded 2-3 links, print off the ones i noted, and post in LLMD REQUEST FORUM bolded too.

after youread dr. corson's 2 articles, you'll have a good idea if you have lyme and/or any of the other diseases, co-infections, the ticks carry!

bettyg, iowa leader

Also have pins and needles in my body, numb patches on my legs. I also had the weakness in the arms and legs, although I don't have it right now.

I can also relate to the mind blanks and stammering of words. In addition, I have lower back and knee pain as well as left shoulder pain.

I went on a dose of antibiotics for a UTI and had a major reaction to them and stopped taking them halfway through....I just started another 10 days of antibiotics for a sinus infection yesterday and really am hoping I don't have another reaction.

I to had the ELISA test come back negative and am about to do the same thing you did..I told my husband I am about to go to the hospital and insist on the Western Blot test...

Also I have Gastro problems that come and go...

I also had a back reaction to antidepressants that I was put on although it did help my anxiety but everything else felt worse

Also have the eye problems that are worse some days than others...

I have had normal bloodwork except low vitamin D, normal cat scan of my head and neck, normal MRI with and without contrast of my head and cervical spine, normal ekg, normal ultrasound of my gall bladder because of the stomach problems, normal chest x-ray, and now am having an EMG of my legs tomorrow.

I have called and 5 weeks going to see a LLMD, I don't know what else to do, my doctors think it is all in my head.

Post edited by: NJDevChick, at: 06/22/2011 06:44 AM

Post edited by: NJDevChick, at: 06/22/2011 06:47 AM

I would send your bloods to Igenix and go from there. Also PM the moderators for an LLMD in the area. There are so few, unfortunately.

If you are in RI do NOT go to the South County Lyme clinic - it's a big scam.

I'm not commenting on whether or not you have Lyme but Igenix and an LLMD are the best combo to really figure this out.

Also, we all know we aren't crazy, and can read the weird symptoms that Lyme causes. Most of us have been blown off by ignorant doctors as the disease has spread, making it more difficult to cure.

Igenix costs a lot but is worth it for you health. Shortness of breath also suggests Babesiosis and there are many subspecies that are not tested for. That's what happened to me but I was treated for Babesia and Lyme, anyway.

Take care - good luck.

S

The hospital told me they would run a western blot, but, when I called for the read out of it, they told me the "reflex" came back negative. If i am right, a "reflex" reading is the ELISA testing only, not western blot. I asked what the titers had r ead and they told me there was no titer read out. Either there was a screw up at the lab or they simply did not run it. I hope you have better luck getting the proper testing done.

Post edited by: RIRed, at: 06/22/2011 10:44 AM

Yes, you need to get an IGenex test. I called the insurance to see how they would reimburse. Since it is the only accurate (or closest) test that I know of, they would reimburse if I had my blood drawn at the hospital. I had to borrow the money for the test, but most of it was reimbursed. Best thing I did! (I know some have lost their insurance, and I am very sorry for that. I just thought it would help to have a process to go through if a member still has insurance.)

After over 3 decades of what you described and more, I am improving due to LLMDs treatment and care. Keep plugging away at finding a LLMD and getting the IGenex testing. Our prayers are with you.