I am waiting to see an infectious disease specialist regarding test results from IGenex Inc.
I have been sick for over a year with an unknown illness that has stopped me in my tracks.
I have extreme malaise/fatigue, very sore achy muscles (especially buttock and legs) and some nerve burning issues as well.
My results are confusing and I thought someone here may have some insight?
#1 - Multiplex B. Whole Blood (Negative)
#2 - Multiplex B. Serum (Negative)
#3 - Western Blot Igenex Result (Postive)
#4 - Western Blot CDC NYS Result (Postive)
Then they ran the Western Blot a second time and:
#3 - Western Blot Igenex Result (Postive)
#4 - Western Blot CDC NYS Result (Negative)
So...my very straight forward question is DO I HAVE LYME DISEASE???
Thanks for reading...
[ 10-31-2009, 12:52 PM: Message edited by: callctr2000 ]
Posted by seekhelp (Member # 15067) on :
Sure looks like a positive to me. It also looks like the good ole' ID doc doesn't like your positive and in their snake-like manner are praying to see a negative by re-testing until they do.
Posted by Tincup (Member # 5829) on :
Welcome call....
Sorry you've been so sick for so long.
I am NOT a doctor.. but the results suggest you have been exposed to Lyme disease.
By the way.. in case you want to know...
It is Lyme disease.. not LymeS disease.
Like deer vs. deers.
I hope you get some answers and most of all...
I hope you feel better soon.
Posted by callctr2000 (Member # 23044) on :
Thanks for the post and lesson on the terminology ;-)
Posted by bettyg (Member # 6147) on :
welcome 2000
post in SEEKING DR. and show in subject line and NAME the closest USA STATE/S to you LLMD needed
do NOT go to infectious drs; they treat from 1 pill to 3 wks. max and "you are cured"! HOG WASH; you just become chronic then.
copy your post here there so they have some more info as well. please BREAK it up into short paragraphs and double space between each paragraph and also your blood results so it's easier to comprehend/read for us neuro lyme folks.
big thanks; use my guidelines below. hugs
Welcome to Lymenet! I'm so glad you found us! You've come to the right place for education and support!
The following is some links that may be helpful to you:
People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.
The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately.
This explains the medical politics around Lyme, and why you need an ILADS-educated or ILADS-member LLMD (and there are also some ILADS-member LL NDs (naturopathic doctors):
ILADS The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases. www.ilads.org
They will also send you a ``test kit'' with their required form, all the test vials, & box to ship it in. Be sure to download Igenex's required form. MD, DO, ND, AC, DC are all fine** must sign, date, and show diagnosis code on there why he's ordering the test.
Optional tests include: co-infection panel for your area of country and PCR whole blood
Igenex is pre-pay/out of network for most insurances. If you are on medicare, Igenex will file the paperwork & it's free to you.
Betty's suggested posting guidelines: Many of members have neuro lyme, and it is hard to read long solid block text and be able to comprehend.
For easier reading, please edit your post by clicking the ``paper pencil' icon to right of your user name, which opens up the subject line and body text.
You can break up your longer paragraphs into smaller paragraphs. Please hit ``enter'' key twice after each paragraph, also.
Go to left hand corner and mark box to receive `all replies', and click edit send.
Thank you for posting in a manner that makes it easier for all to read and help others.
Posted by Lymetoo (Member # 743) on :
You have 3 positive tests. Take them and get treated.
Most ID doctors will ONLY treat for 30 days.
Find a dr who will treat you until you are well.
Go to Seeking a Doctor here and someone will help you find one near you.
welcome!
Posted by callctr2000 (Member # 23044) on :
wow...a lot to research and take in! Thanks for all of the support and information. I do have a link to a Lyme disease specialist through my Naturopath who is taking a support role to help my body with the possibility of major Antibiotics in my treatment.
The infectious doctor is someone I have been referred to who has an excellent reputation, so I will check him out on Monday and then get into the Lyme specialist to see what the course of treatment is.
I am in Canada and it takes months sometimes to get into a specialist :-(
Posted by Pinelady (Member # 18524) on :
Getting copies of all your records is great.
You may also want to make sure you get your case
reported as CDC pos. I do suggest building up the
immune system before treatment. Many take
supplements to do that and I have recently
introduced vitamin E which I feel may help
prevent biofilm. Prayers for a easy road in treatment.
Posted by JamesNYC (Member # 15793) on :
Call,
Welcome to Lymenet.
Actually the WB test has 2 different components. One is IGG, the other IGM.
However, Lyme is a clinical diagnosis and the tests should be used to support it. Therefore, why are you even wondering???
You have the symptoms, and very positive test results.
Straight forward answer: YOU HAVE LYME!
IDMDs are not very successful in treating lyme. You should look for a Lyme Literate MD in the Seeking a DR forum.
Also, it would be really helpful to you to read "Cure Unknown: Inside the Lyme Epidemic" by Pam Weintraub so you can understand the strange way Drs will act towards you.
Good luck
James
Posted by callctr2000 (Member # 23044) on :
Thanks James.
My reason for doubt are the negative results mixed in with the positive ones...combined with a long history of many tests but no answers.
I'm a bit of a pessimist ;-)
What you say makes perfect sense and I will schedule in with a LLMD.
Thankfully my Naturopath has a good referal for me on that front.
I appreciate the information and support.
I will post the course of treatment once I have that established.
Now I have to get to all that research you guys have recommended! ;-)
Posted by JamesNYC (Member # 15793) on :
The tests are very unreliable when negative. But very reliable when positive. The fact that you had so many positive bands is a slam-dunk.
Anyway, I hope you start feeling better soon!
James
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by JamesNYC: The tests are very unreliable when negative. But very reliable when positive. The fact that you had so many positive bands is a slam-dunk.
Anyway, I hope you start feeling better soon!
Absolutely!
Some labs are not good at picking up the antibodies... hence the negatives.
Also, the CDC and NYS have different guidelines. Just because it's not considered positive by their standards does not mean much.
You have too many postive test results to ignore. Sorry!!
Posted by callctr2000 (Member # 23044) on :
Thanks for all the help.
I am pretty excited about having a diagnosis and the prospect of feeling better!!!
![[Big Grin]](biggrin.gif)