Process of being diagnosed - Lyme Disease Message Board

4sons · 09-03-2007, 04:00 PM

I admire each one of you for your courage and hope. I need your advice on the process of getting diagnosed. Should I have the Western Blot from Igenex done before I search for a Lyme Doctor? Does Igenex explain the results to you? Does anyone know of a Lyme Doctor in North Carolina or surrounding states they can recommend? I heard the main one is leaving the state.Any information on Dr. B in Asheville North Carolina? Thank you for all your help. You all have provided more information to me than the medical field has. I appreciate it

bigstan · 09-03-2007, 05:37 PM

Hello 4sons, I think it's a good thing that you are taking steps to improve your health. How long have you been sick? What are your symptoms? On the IgeneX question you ask. IgeneX will send you the blood tubes, the requisition information, and a return Fed Ex clinical bag. The most common Wester Blot panel order number is #6050 this includes Wester Blot IgG and IgM, Lyme IgG/IgM/IgA Screen (IFA), and Lyme PCR-Whole Blood**. Now there are different panels depending on where you live. You should call them and ask which panel. The problem you are going to have is that IgeneX will not process your test unless you have a doctor, or LLMD fill out the diagnosis codes on the requisition form. There is a doctor that you can call at IgeneX to go over your results. Or you can post them here and there are people on board (Ticker) who can help you read them.

Ticker will also probably answer this post and help you find a LLMD nearest you.

Good Luck

4sons · 09-03-2007, 06:12 PM

Thank you very much for the information about ordering the test. I dont have a primary doctor at this point,as I dont like them. Had a neg Elisa in June. Symptoms almost 2 years that I am aware of,such as head and neckache, droopy eyelids, ringing in ears, palpations and tachycardia, can not taste much,FATIGUE, upset stomach, pain under left rib, MIND FOG< FORGETFULNESS, pain in knees,elbows and back, legs burn when walking and difficulty walking. I am sure I forgot a lot as my brain is not working. Worst symptoms come in cycles of severity-5-6 weeks I think. Primary doctors keep sending me to Neuros,all end up saying "I dont know what the matter with you". Oh wellll. Thank you for your time bigstan. I appreciate your thoughtfulness!

ticker · 09-03-2007, 07:04 PM

Hi 4sons, welcome to the board!

How long have you been sick? I suggest making an appointment with a Lyme doctor first. If you cannot get in soon, I would ask the office if you should have the testing done ahead to save time.

The kit can be sent to you, but the results will be sent to a doctor only.

Dr. Jemsek in Huntersville is the only Lyme doctor I know of in NC, and I believe he is relocating. Maybe you could see him before he moves and/or call his office to see if they could recommend someone else. Also check with support groups in the state. They may be able to recommend someone.

When Lyme disease is a possibility, it is very important to see a knowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. No test is completely reliable, and results can vary by lab.

Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. It is estimated that 60% of people who have Lyme are co-infected. It may affect treatment choice and progress. It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA.

It is also important to learn as much as possible. I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses (on-line). He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. I also recommend the book "Everything You Need To Know About Lyme Disease
(2nd edition)" by Karen Vanderhoof-Forschner.

bigstan · 09-04-2007, 12:54 AM

Hey 4sons, I just wanted to let you know that your symptoms are exactly like mine: Head and neckache, droopy eyelids, ringing in ears, palpations and tachycardia, can not taste much,FATIGUE, upset stomach, pain under left rib, MIND FOG< FORGETFULNESS, pain in knees,elbows and back, legs burn when walking and difficulty walking. I have all these and about 30 more.

The tachycardia and palpitations are the scary part. I had numerous stress test for the heart and aced them. Doctors were telling me it's all in my head. Find a good doctor. Treatment is available. I am currently doing home infusion with antibiotics daily. I'm three weeks into treatment.

Good luck to you and keep us posted.