Hello all. This is my first post, but I have been looking around here and many other places for a couple of months now. Here is some history and I do appreciate all your advice and for listening:
My girlfriend's left arm went numb in March of this year (2008). We went to E.R. and she has multiple brain lesions and 1 spinal lesion. Diagnosed with probable MS from her neurologist. She now has optic neuritis, bladder problems and is taking medicine for that and is also on Betaseron (for MS).
Being the researcher that I am, I came to the conclusion with all her symptoms she could have MS, or she could have Lyme (and I have read enough here to know that MS might be Lyme etc...). Her neurologist said she is certain her lesions are not from Lyme. She tested negative for Lyme with the one blood test they did. However, she also tested negative for MS from the Lumbar Puncture.
I want my girlfriend to at least see a Lyme Literate MD, and get tested properly for Lyme, just to be sure.
Now, what are our first steps? We live in Denver, CO and I have not seen much here as far as finding a good LLMD. Also, which tests should be performed to ensure everything is checked properly. And from which company? I have read from multiple posts here to go through a company like IG something... I am just looking for some good solid advice on where to start.
The doctors say MS, my girlfriend has accepted MS. I have not accepted anything until I get some concrete answers. She is only 26 and is having troubles walking and seeing and our life has been turned upside down. If it is MS, then so be it. I just want to make sure we do not live with a disease that might have been treated early. Where should we start?
[ 18. August 2008, 08:24 PM: Message edited by: bonjourmoi44 ]
Posted by sixgoofykids (Member # 11141) on :
You're off to a good start reading and educating yourself .... also in talking her into seeing an LLMD.
Post under seeking doctors to find an LLMD. I fly from Ohio to NY to see mine, so don't be surprised if you have to travel.
The company name you are looking for is IGeneX. Posted by SForsgren (Member # 7686) on :
I would not accept MS. I would get:
IGeneX Western Blot LabCorp CD57 IGeneX co-infection tests
Chances are very good that if not Lyme, it is a virus or other infection.
Posted by bonjourmoi44 (Member # 15884) on :
Wow, thanks for the amazingly quick responses. I have posted in the seeking doctor forum (thanks for tip). My gut tells with her symptoms from her past, that we at least need to get the Lyme tests. Thanks for much for your help.
Posted by Vermont_Lymie (Member # 9780) on :
I think you are doing the right thing, in getting your girlfriend to a lyme literate doctor.
Lyme can cause brain and spinal lesions, and all the symptoms that you mention. And it sounds like the neurologist is uninformed about lyme and its neurological consequences.
Remember, the blood tests are not very sensitive -- they miss many true cases of lyme disease, and have many false negatives.
These tests are designed to not give any false positives (specific), but at the cost of misssing a large proportion of true positives. This goes for Igenex as well.
But if you get a positive result, you can be assured it is positive.
That is why she must see an llmd --it is a clinical diagnosis. Best wishes.
Posted by ByronSBell 2007 (Member # 11496) on :
Just to let you know, my friend who was diagnosed with MS and had all the lesions on her brain and spine are now gone after treating lyme for 4.5 months on IV's and 3 months on orals, along with other things for detox and heparin.
Posted by hcconn22 (Member # 5263) on :
Also since you like to research I would highly recommned that you get and read Pam Weintraub's new book on Lyme titled Cure Unknown. It just came out two weeks ago and is great.
This will bring you up to speed on many issues facing people with lyme, or attemping to get a proper CLINICAL Dx. Lyme is a clinical dx and not a simple blood test.
Since your girlfriend is obviously very ill (and there is a good probability that she could have Lyme and not MS) it would be well worth reading.
Also in the book you will hear about many links to Lyme & MS. Some LLMD's including mine have spend hundreds of hours researching this topic and are convinced by scientific research that they are connected. In addition in his practice he has treated hundreds of patients that have been Dx with MS, yet after further review and testing were Dx with Lyme and responded to treatment.
Last is there much Lyme in CO and or has your girlfriend been elsewhere where Lyme is more endemic?
Posted by radfaraf (Member # 11909) on :
I second the book.
Posted by bonjourmoi44 (Member # 15884) on :
Thank you all for the great information. I know it has been a few months since I originally posted, but I think we are ready to move forward.
There do not seem to be a lot of LLMDs in Denver Colorado. Is it possible for us to order a kit from IGeneX and then have our family doc draw the blood etc...? Then when we have the test results try and find a LLMD, hopefully somewhere close? Does that lab perform all the tests we need?
I really want to make sure we do this right from the start. Thanks for anymore advice. I feel lost when it comes to this and I want to help out in anyway that I can so I can be an expert.
Cameron
Posted by lymednva (Member # 9098) on :
Yes, you can order the kit for testing yourself by going to the Igenex website. Be sure the PCP will agree to do the testing first, though.
If you do go this route please post the results after you get them back. Ask the doctor for a copy of the results.
As mentioned before a test may say negative, but that doesn't mean a clinical dx might not be made by a LLMD. I have only tested positive for Babesia Duncanii, but have been treated for Lyme, Bartonella, and Babesia, and responded to each tx.
Posted by Lymetoo (Member # 743) on :
Yes, order the test kit for test #188 and 189. You may also want to get the babesia test done.
Fry lab also has cheaper testing for coinfections. So if you're going to order all of them, and your $$$ is low, consider Fry for the co's.
When the kit comes, take it to your dr and have them draw the blood. Do it early in the week so the test sample will not sit around in the post office over the weekend.
The betaseron MAY cause the test to come back "less than positive".. so keep that in mind.
Posted by jam338 (Member # 14002) on :
hi bonjourmoi44, I am new to this board too and recently diagnosed with lyme (Igenex). Here is something for you to consider since you apparently have insurance support for testing. Ask her to have her doctor authorize a CD57 Flow Cytometry Test. It can be done through Quest or LabCorp. It is a natural killer cell test that LLMDs utilize. If her CD57 score is below 60 on LabCorp or 20 on Quest, it is indicative that lyme is in play and definitely warrants an Igenex test. That is how I got diagnosed.
I had been diagnosed FM/CFS for over 15 years. Doctors say FM is not progressive. I was clearly progressively getting worse. So, either they are wrong about it being progressive or I have something else.
That lead me to online message boards looking for options on what else it could be. Many lyme literate patients told me I had lyme for months before I did!
Someone finally said at least get the CD57 test done through your HMO with Quest. I did, and WOW....I was a "2"! I knew then I HAD to get the Igenex test. I am Igenex Positive for lyme and Babesia Duncani.
So, she might consider at least getting the CD57 test first. Easy to do, no test kits, no FedEX arranging.
That said, a higher than 20/60 CD57 does not mean she doesn't have lyme. But, it is an easy place to start.
Your gf is very lucky to have such a caring bf trying to help her! Bless your heart! Good luck:)
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