7 years and still hurting

[Jenny Wren]

Any one that reads this post can search my name on this forum and see that there are many.  I have a neuro appt on Thursday.  This will be the third neuro.  My last one wanted to jump directly to a spinal tap after my last round of brain and spinal MRIs were normal.  Never mentioned a EMG/NCS, or any evoked potential testing, so I decided to move on.  I don't know what I have, just that I am completely miserable, everyday, with this razor burn feelings that I fell throughout my body.  I really have no other symptoms of Lyme disease besides this, all my bloodwork has been normal, and there has been lots taken, believe me.  I have no joint pain, muscle pain, or any of the other typical Lyme symptoms, except for the burning.  I would imagine that this neuro will repeat my MRIs being it been a year since the last one,  and I am hoping that they remain normal, but this still doesn't tell me why I have this burning.  

If the testing that the new neuro does comes back normal, I am going to seek the testing from IGENEX.  I am just so leary about this, because everything I have read, there has been no one that has been told they don't have Lyme disease.  I know this sounds a bit rediculous, but I just wonder if there has been people that were tested through IGENEX and told that they DON'T have Lyme disease?

Could someone just have 1 symptom of Lyme, like myself, and still have it?  I do not feel sick, besides clothing hurting me sometimes and the razor burn feelings, I feel normal.  I just want to go back to where I was 7 years ago before this all started.

All my docs say either "anxiety", or fibromyalgia", which I believe docs tell you when they have nothing else to diagnose you with.  Yes, I have anxiety, but only because of the feelings that I feel throughout my body everyday.  As far as fibromyalgia, I don't believe in it, besides I have really no muscle pain, except for in my shoulders sometimes when using the computer to much.  

What do you think, anyone?  I know the ELISA test isn't that accurate.  Can you just demand a Western Blot?  

Thank you, Jen

[speechgeek]

I know all you lyme experts know this but a reminder to those new to this that  it doesn't matter how many bands you have just which ones come back positive. So a doctor may tell you your results are negative and your next question is "Did any of my bands come back positive" this is true of Igenex as well.

I was told mine was negative. Whne I asked the magic question it turned out that band 23 was positive on the igm and I had several IND on my labs. Here's a link that explains western blots and IND.

http://www.publichealthalert.org/articles/james%20schaller/western%20blots%20made%20easy.html

Rebeccah

[PlateletGal]

The protocol I'm doing is treating CFIDS, fibro, chronic lyme and autoimmune diseases. If you would like more information on this protocol, I'll zip some links to you via PM.

[Carol in PA]

Physicians have been instructed to order the ELISA test for Lyme first.
From what I remember reading, the committee that formed the guidelines for this included several doctors who owned stock in the company, so every time a lab uses one of their ELISA kits, they make money.  

Most labs only test for one strain of borrelia, and there are many strains.
Igenex tests for three strains.  
Also, they record all the "bands" that show, and most labs just give a "positive" or a "negative" as the result.

Why wait until after your visit to the neurologist to call Igenex?
Call now.  The kits are shipped quickly.

Carol

[patsy10]

The doctor I mentioned does the test.  I did not have a positive test.  He only ordered IGM.  It showed 30+, 39 and 41 were Indeterminate.  He never told me I had lyme.  He said he didn't know and that how I responded to antibiotics would be the deciding factor.  The form of lyme Carol mentioned is called Master's disease.  He did mention that I could have this strain.  The cost of the IGM was about $100.  So I guess about $200 for both.  Mine was done in 2006.  It may have gone up.  I'm a skeptic like you.  I had no positive test but had the rash.

I agree with you about the fibro diagnosis.  I have that diagnosis too.  You don't seem to have any fibro symptoms at all.  They just feel they  have to give you a diagnosis so fibro and anxiety are usually at the top of their lists....Oh and depression too.  The burning all over can be a neuropathy.

[Jenny Wren]

Thank you Carol, I appreciate your help.  Do you know what the cost is for the IGG and IGM?  Isn't there a western blot done when your elisa comes back positive?  My pcp told me that they don't do a western blot unless the elisa comes back positive, which mine did.  But this was after having symptoms for 5 years.  The longer you have it, the harder it is to trace, is that true?  I think I will be getting in touch with IGENEX after my visit to the neuro on Thursday, because so far, they all look at me like I'm crazy.  I think I may also have my hubby tested also because he has had 3 ticks on him in the last few years.  Thank you kindly, its nice to know that there are so many thoughtful and caring people out there.  Jen

[Carol in PA]

Jenny, I've been reading at LymeNet for more than four years, and there have been a number of people who got tested at Igenex and did not show Lyme bands.

There is a tick borne infection that looks exactly like Lyme, but does not show up on the tests.  Researchers think that it's a different strain of borrelia, and we do not have a test for that strain.

If you want to get the Western Blot tests done at Igenex, you can call them and ask for a ''kit'' to be sent to your home.
Their website has a toll free number.  The receptionist is helpful, and even agreed to send two kits, once when I called for a friend with Lyme symptoms.
Ask for tests #188 and #189, which are the Western Blot IgG and IgM.
The kit contains the instructions and the tubes needed, and packing materials to ship the serum back to Igenex, via FedEx.  
The kit is free, and the cost for return shipment via FedEx is included in the cost of the test.
You are not under any obligation if you request a kit, so if you change your mind, there is no problem.

Tests #188 and 189 are good for initial screening.  Any physician can order the test, all you need is that he write the order on one of his prescription sheets, which is sent along with the serum and the forms.
The whole thing seems to work better if you have the kit in hand to show him.
I copied off the page at Igenex that showed the list of tests and the CPT codes, and highlighted in yellow the ones I was requesting.

Read all the instructions.  Any lab can draw the blood and spin it down.
I told my doctor that I would enclose payment and take care of the packaging, and shipment.
There is a protective cardboard box and zippered plastic bag to use.
There are some address stickers to put on the FedEx envelope.
I made sure that everything was in order, then looked up the FedEx number in the phone book, and called to request a pick up.  The FedEx truck pulled up an hour or two later, and got it.

If you just go to a doctor's office and request that test be done at that specific lab, they will probably refuse.  If they've never done it before, they are sure to think that you are mighty strange.
So if you do it that way, you are setting yourself up for disappointment.

Go to Igenex dot com, and look at the various links.
There is a lot of information, but the initial screening tests #188 and #189 can get you moving in the right direction.

The results are sent to the physician's office, and you can request a copy for your files.
There are articles at LymeNet.org that explain about interpreting the test results.

Wishing you the best,
Carol