Was just told I had Lyme

Hi Everyone,

I am new and I've just been through the "read first". My doc told me the other day I had Lyme. I was tested through Igenix sp? I have two markers. 1 IgM and 1 IgG
all I remember is one of them is # 37 . He took blood that day for a CD57, EB, and several co-infections. The results are in but since it is a holiday weekend I have to wait until Tuesday to find out more.

I have tested positive in the past for EB & CPN, and diagnosed with Fibromyalgia. Also, 3 1/2 years ago the neurologist started to treat me for the most excruciating facial pain. It was finally decided I had trigeminal neuralgia After having bad rxn to Lyrica I had gamma knife surgery. But the pain just got worse over time, and seemed to be like it had a life cycle. First every six months, then every 3, now I've had crazy symptoms since March that have not gone away.

In mid March of this year I went to my doc complaining that my tongue was hurting really bad. ( like too much OJ and you get a sore only all over my tongue) Nothing was visible to him but it hurt for days. Also, my ear started to hurt like I had a bad ear infection. Then suddenly I was sitting in my classroom (I teach high school science) and my face started to go numb. It moved up into my cheek and all on the right side of my face and even into my ear. My hand, arm, leg and foot also went numb. I thought I was having a stroke and went to the ER Nothing showed on the CT scan, heart monitor and whatever else they checked for. Several nurses thought I had bell's palsy but my face wasn't droopy, just numb.

The day after the CT scan, I went to see my neurologist who promptly ordered an MRI. The MRI results were that the trigeminal nerve was inflamed and that it was probably an infection. The neurologist sent me to the neurosurgeon for a second opinion, who said if I was having a rxn to the gamma knife surgery it would have happened over a year ago so I probably didn't have TN after all, and he couldn't help me.

I begged the neurologist for a spinal. He did the usual MS and RA and a few other tests. Cultures turned up negative. It showed nothing but low B-12.
I've had all the regular thyroid, hormones, sugar, cholesterol, yada yada all normal.

During this entire time, I have the feeling that something is crawling under my cheeks and chin back and forth from my nose to my ear, then from my chin to my ear, then around my eye. Imagine a sci-fi movie where an alien is crawling around but you can't see anything from the outside. My skin sometimes itches deep inside, yet was and is numb like I just got a shot from the dentist on one whole side of my face. My right ear feels like there are bugs or worms crawling inside. Sometimes it itches way down inside especially when I lay down. It sometimes feels like there is fluid in my ear. What worries me the most is my right eye feels like I'm being stabbed with an ice pick or knitting needle, also it is dry most of the time and itches often. Many days my whole eye hurts. I am afraid I will tear my retina. Over the months, the pain has increased in my head, my right temple feels like it is bruised all the time. I get bad headaches. I am afraid that I will lose my vision. I get electric shock feelings in my lips or they are numb. Over half my tongue is numb, I can't taste much of anything.

about every three to 4 weeks I start hurting really bad all over ( classic FM symptoms I thought ) then my tongue starts to hurt and has been getting small blisters? white bumps on it. This cycle started this week and tonight I have blisters again.

Two weeks ago, I begged my regular GP for Herpes shingles & simplex 1,2, 6 test thinking that could be the problem because it affects the trigeminal nerve. But tests came back negative. So last week he said I probably had Lyme although I had twice done LabCorp testing in previous years with negative results, so I agreed to Igenix.

And now I find that Lyme it is positive and he thinks it is probably chronic?

I have been taking 300 mg of Lyrica for months now, which knocks me on my butt and hasn't been doing much good lately. I barely made it through the end of the school year.

I have many questions:

Do these symptoms sound familiar to anyone? Do they sound like Lyme? can Lyme cause the depression I've had for twenty five years? And the fibro symptoms? Do I have enough markers to cause all of this mess?

I'm sure I've had tick bites over the years but never noticed any rash or maybe thought I had a spider bite. I summered and then lived in Colorado in the 70's & 80's. I've had flea bites too, from cats. How long can someone have Lyme before it shows up?

Can I have imaging done to prove there are spirochetes or whatever? My doc says they typically hide out in the jawbone.

I am about ready to have someone drill into my head and take a biopsy. Is that possible?

Has anyone tried silver and if so what kind worked that doesn't cause you to turn blue?

What about Japanese Bushy Knotweed or Hu Zhang ?

If you are reading this and it sounds like anything else you can think of I certainly would appreciate some clues.

If you have any suggestions I am open.

Thank you for reading this I know it is long and I deeply appreciate any information you can share.

Understandably, you have a lot of questions and you are right to be concerned whether or not you have Lyme disease. about taking Silver, knotweed, etc, all that is not important at this point. To take a bunch of stuff and hope your symptoms go away isn't the way to go about treating Lyme disease (assuming you have it).

If you really want to get to the bottom of this, the best thing you can do is make an appointment with a Lyme Literate Medical Doctor (LLMD) or a Lyme Literate Naturopathic Doctor (LLND) and let him/her look over your test results. Did your GP do those tests or did you see and LLMD? If you want to know for sure whether or not you have Lyme disease, see a LLMD because no other doctor is qualified to diagnose AND treat this disease. The fact that you were diagnosed by some doctor is fine, but what's he going to do about it? Nothing, because he doesn't have the experience or qualifications to treat Lyme disease.

By the way, yes, many of your symptoms are similar to Lyme disease and co-infections, and the fact that you think you were bit by a tick (or more than one) is pretty good evidence that you may have Lyme disease, especially in light of your Igenex test results.

Make an appointment to see an LLMD and he/she will help you get to the bottom of this. Sorry for all of the suffering you are going through. You can beat this disease, but you need to see a qualified LLMD to help you do it.

Gary

Post Edited (GWB) : 7/5/2010 6:55:24 AM (GMT-6)

Hi you said you were positive for CPN at one time were you treated for that. I have been diagnosed with MS, then Lyme and now CPN, We treated Lyme heavily at first went into remission for over 2 years and had a baby and boom I was sick again. My LLMD now believes CPN is causing my MS symotoms and lesions on my spine. I have been doing the Stratton Vandebelt protocol for months now, I haven't improved alot but have had no new symptoms. Which is good for me because when I've been sick and not been on antibiotics I have constant new Nuero flare ups that last a couple months at a time. There is a great website http://www.cpnhelp.org/home that has helped me alot.

I am not convinced fully this is the right treatment for me but they say it takes 3-5 years. When they treated my Lyme before I started with Minocycline while waiting for 90 days of IV Rocephen that is what kicked my butt. But after that my MRI went from 11 lesions to none. My MS doctor was shocked but still won't consider antibiotics. Couldn't really believe that my LLMD I fly 3000 miles away would not perscribe IV again. And now i can't afford another LLMD so we will go with the CPN for now.

Just my story I hope you get the help you need. Best of luck!