New to the forum, but I have been lurking for a while at this site, and a few others, trying to figure out what's wrong with me. Been sick almost 12 years, worse lately. Been offered different diagnosis of everything from mild Guillien Barre, to post viral, to CFS. I have the majority of symptoms that many here suffer with. I live in Toronto, Canada, and there is not a LLMD in the city, only one in the country that I am aware of in Vancouver.
I managed to get my current doctor to do an Igenex test on me. He is not sure on how to interpret the results and is setting up an appointment with an infectious disease specialist for me. I don't know how Lyme literate he will be and I would appreciate any help interrupting my results in adavance of seeing him.
I have been reading a lot about the testing for a few days, trying to figure out what the results mean, but I am little lost, the brain just does not work like it used to. I do realize the is no black and white, but any help/feedback would be greatly appreciated.
Thanks,
Karyn
Posted by 5dana8 (Member # 7935) on :
K-Tee
Here's a good link that explains better than I could about the western Blot
You should try and find a lyme literate doctor as soon as possible.
How long have you been having symptoms?
Lyme disease is a clinical diagnosis- Meaning based on symptoms & patient history
Posted by Thomas Parkman (Member # 3669) on :
Dear Karyn:
Get thee to Vancouver and that LLMD. The infectious disease people are the worst when it comes to dealing with lyme disease. Find Dr. C' s essay on Western Blot Tests, see if you can find it on the archives here. It will explain it far better than I ever could.
LD is a clinical diagnosis because the serological testing is so crapulent. Of course what do you expect from a disease whose primary defense mechanisms evade or undermine the immune system. Then we are testing for the disease by looking at the immune response????? again ?????
So for the two cents worth from a complete ignornamus. The strong kDa 41 is indicative of some kind of spirochaetal infection. The positive 30 is very close to a positive 31. 31, 34 and 39 are among the strongest indicators for LD with 39 kDa being absolutly unique to LD. Given your symptoms the IND after the 39 reading is certainly suspicious. All of this merely to clearly indicate the reasons for going to an LLMD who will know how to read the tests for what they actually say and do not say. Good Luck, Thomas Parkman
[ 11. March 2006, 05:38 PM: Message edited by: Thomas Parkman ]
Posted by bettyg (Member # 6147) on :
Welcome Karyn,
IGM has 7 positives; you have LYME disease; now you need the CLINICAL DX OF LYME from your PCP!
My LLMD explained it this way to me. + and ++ = 1 +++ = 2 ++++ = 3 positives
Go to the support group, left hand column, and look for Canada & their support groups. Get to the Vancouver LLMD as Thomas suggested ASAP.
Here is some other newbie stuff for you ok.
Welcome to this 24/7 LYME support group board!
Here's TREEPATROL's and Tincup's combination newbie links.
Print off the links then check them off as you read as you could spend several months reading all of this.
print & read Dr. Barrascono's 2005 info first; you will come back to this often.
Extensive info in Treepatrol's newbie links about the meaning of WESTERN BLOT IGM/IGG test results from Igenex! Be sure to read or print this info IF Igenex tested you ok!
Also, see Cheryl's extensive web sites on: LD DIAGNOSIS, SYMPTOMS, & TREATMENT ... wonderful! Read the area on CO-INFECTIONS! You could have from 1-12 other illnesses that tick is carrying...lyme, malaria, etc.
If you are showing symptoms of co-infections, I would like to suggest being tested for co-infections when you have LYME western blots done. It isn't cheap!! But if you are positive, you can treat the co-infections first, and then work on LYME symptoms.
EYE SENSITIVIES & NOIR, no infrared sunglasses info., 2-28-06 updated
YES, I have what you have! Are you on doxy too? That made my extreme eyes 200% MORE sensitive than they we were earlier. I learned a lot about eye sensitivity/lighting on www.marshallprotocol.com board. Look for AUSSIE BARB'S EAST FINDER and then eyes/sunglasses, etc. Wealth of info there.
You will need 2% amber and 10% amber ... Style no. 901 and 910. 1-800-521-9746 TOLL- FREE
mention you have lyme and marshall protocol, they will give you 20% off! Also they have been kind enough to replace the SCRATCHED LENSES & BROKEN BOWS! How's that for service?
I don't drive often at night, but I can wear NOIR's 901 lenses at night while driving; it creates soft candle lights coming at me...tolerable. NOT to wear in town with all the action of people crossing where they shouldn't be, etc.
from LOU to Betty on LONG web links and Thank You Lou!: "If you hit the return key in the middle of a link, I don't think it will be clickable anymore. An alternative that maybe Betty should be telling people about is the tiny url website. I have it on my tool bar at the top of the page and use it for those incredablylongwebsiteaddresses.
All you have to do is ask tiny url to produce a short version, which it will do with a unique address, which you then use instead in your post. Works just the same when clicked! Here is the website, spread the word!
3-1-06, fyi, I tried dragging tinyurl to my toolbar without success, so that's why I currently have LONG addresses vs. short tiny ones! I'll keep trying.
There is an LLMD on the East coast of Canada. Go to canlyme.com and ask for his name and someone will private message you with it.
Gwen
Posted by Lymetoo (Member # 743) on :
18: An outer surface protein.
22: Possibly a variant of outer surface protein C.
23-25: Outer surface protein C (osp C).
28: An outer surface protein.
30: Possibly a variant of outer surface protein A.
31: Outer surface protein A (osp A). 34: Outer surface protein B (osp B).
37: Unknown, but it is in the medical literature that it is a borrelia-associated antibody. Other labs consider it significant.
39: Unknown what this antigen is, but based on research at the National Institute of Health (NIH), other Borrelia (such as Borrelia recurrentis that causes relapsing fever), do not even have the genetics to code for the 39 kDa antigen, much less produce it. It is the most specific antibody for borreliosis of all.
41: Flagella or tail. This is how Borrelia burgdorferi moves around, by moving the flagella. Many bacteria have flagella. This is the most common borreliosis antibody.
45: Heat shock protein. This helps the bacteria survive fever. The only bacteria in the world that does not have heat shock proteins is Treponema pallidum, the cause of syphilis.
58: Heat shock protein.
66: Heat shock protein. This is the second most common borrelia antibody.
73: Heat shock protein.
83: This is the DNA or genetic material of Borrelia burgdorferi. It is the same thing as the 93, based upon the medical literature. But laboratories vary in assigning significance to the 83 versus the 93.
93: The DNA or genetic material of Borrelia burgdorferi. In my clinical experience, if a patient has symptoms suspicious for borreliosis, and has one or more of the following bands, there is a very high probability the patient has borreliosis.
These bands are 18, 22, 23-25, 28, 30, 31, 34, 37, 39, 41, 83, and 93. This is true regardless of whether it is IgG or IgM..
If you'll read the link Dana gave you, you will also see that "IND" is a weak positive. Dr C refers to it as "equivocal" since that is what it used to be called, and his essay is several years old.
Posted by Lymetoo (Member # 743) on :
PS.... Band 93 alone says you have Lyme because ... "93: The DNA or genetic material of Borrelia burgdorferi" .... it is the DNA of the Bb.
You can't argue with DNA.
Posted by K-Tee (Member # 8955) on :
Thanks ever so much everyone, for the welcome, and for the quick response to my post.
I have had a feeling for many years that I was infected with something, either bacterial or viral, that was just not being picked up.
I will try to make an appointment with Dr. M. next week and if not him, the LLMD on the east coast as was suggested.
I will be reading all the links you all have kindly provided me with. It seems I am on the start of a whole new journey. I will be printing the responses I received, and any others that are posted, to take with me to the doctors.
I really just wish my brain worked better to absorb and analyze all the information, and then retain it. I actually used to feel like I was a bright person at one time in my life. However, in the last few years of being sick it really is a struggle to even read without feeling fatigued quickly and then can't seem to recall what I read.
What on Earth did we ever do before the Internet, sit alone and think we are the only ones suffering, or it's all in our heads (as was once politely suggested to me by my family physician after running a million tests, all normal,- since retired by the way), I guess.
[ 13. March 2006, 12:38 PM: Message edited by: K-Tee ]
Posted by sunnygirl (Member # 8339) on :
Welcome:
I'm in Alberta. My Igenex readings were almost the same as yours. IND- IGm and Negative- IgG. Similar positive and IND bands.
I started seeing Dr. M. last month. He's great, said the only other thing I could have is syphillus, which I don't have.
I know how frustrating it is going from doctor to doctor and I've spent so much money on alternative doctors with no real help. I finally got so pissed last summer I booked a flight to Denver and went to the FFC Clinic. They took many blood tests and came up with many underlying problems including lyme and pneumoniae.
Go to the canlyme group. Jim Wilson is the spokesman for the group. You can e-mail him. He's so helpful.
Cindy
Posted by K-Tee (Member # 8955) on :
Hi Cindy,
Like you, I have spent more money that I care to remember on alternative treatments with no real changes and I could probably stock a small health food store with the amount of vitamins and supplements I still have around that had no discernible affect on me and that I no longer use.
I am hoping to start to make some real progress as a result of the Igenex tests and with the help of the right doctor. I feel like I have at last found the root of my ills. Thanks for the report on Dr. M.
Karyn
[ 13. March 2006, 12:36 PM: Message edited by: K-Tee ]
Posted by Lymetoo (Member # 743) on :
Hey K-Tee .. would you please go back and edit out your dr's name? We like to protect our docs!!
Just click on the "letter/people" icon above your post. Then edit it out. Thanks!!!! Posted by K-Tee (Member # 8955) on :
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