I started going to an LLMD in June of 2009. I was told because I had the bulls eye rash back in 1988 it was most likely Lymes. I started treatment, but the antibiotics I used were to treat my ulcer. Then I got my Lyme treatment in August when my test results came back and took the second sometime about 4-6 weeks later. So I've doing the treatment now for about 4 months. I will get tested again in about 4 more weeks.
I hope you decide to get tested again too and I would very interested to know your progress.
When did you begin treatment and how long have you been on abx? Were you off abx when they retested your western blot?
I have been thinking about getting retested too, but am wondering if I've been on abx too long now for abx challenge.
I'm happy to hear that you are improving and that you are CDC pos now!
Keep us posted!
Bravo! Keep up the fight! This is tremendous progress, especially after suffering for so very long.
Very glad for you.
My first test results before any treatment were this:
IgM 39 kDa IND
IgM 41 kDa +++
IGG
31 kDa IND
39 kDa +
41 kDa ++
According the test results key
+ is weak positive
++ medium
+++ high
++++ very high
Wonko, yes I was the one who was diagnosed with RA from a Rhuematologist, but I was considered Seronegative. Every since all my problems I have had diagnoses such as a virus, it's all in your head, migraine w/aura disorder (which is true) but likely due to Lymes, duodenal ulcer disease from unknown source, and about 6 months after my car accident in 06 the Neurologist was almost sure I had MS because I became weak on the left side of my body and I was tested for stroke which showed negative on the CT Scan. It's been a real struggle.
I agree that it is better I am CDC positive finally and I hope to get taken seriously more often. I've been laughed out of some many offices it's ridiculous. Thanks for listing your examples because it is true and it would be highly worth it for you to get another test and to all others out there who are wondering.
I am so happy I pursued this diagnosis because I was bitten by a tick w/ bullseye only it happened 20 years ago and I didn't get symptoms until something happened to my body maybe 10 years later then it would go away and come back after a traumatic event. I have had really bad joint lately to point of almost being crippled and ever since the antibiotics it almost disappeared. Right now I am just dealing numbness in hands and legs and chronic fatigue must at least I can take of things better! Hurray!
As for the IND, +, ++, +++, ++++ scale:
These are details that Igenex provides that other labs (Quest, Labcorp) usually do not supply.
The Western blot looks for antibodies. The test sorts the different antibodies by weight using a method called chromatography. In chromatography, a "plate" is used. The plate is specially designed so that when a liquid sample is placed on it, different "stuff" in the sample travels a different distance on the plate due to differences in weight.
(Note: I don't know the exact type of chromatography employed in the Western blot. It could be based on a factor other than weight, such as affinity to different binding agents on the plate, etc, but it's easier to discuss in terms of weight and it is conceptually the same.)
Relatively small antibodies will travel the farthest on the plate, while heavy ones travel less. Just like if you lined runners up at a starting line and gave them 5 seconds to run: The fastest would make it to the finish, while the slower would be somewhere farther behind.
If the sample has many antibodies of different weights, the final plate will have many lines, or bands on it, at different distances. The lab can assign the bands by comparing to standards so they know what antibodies reach what distance on the plate.
If the sample has a lot of one kind of antibody, the band will be darker. (++++) If the sample has only a tiny bit of one kind of antibody, the band will be light (IND or +). Again, standards are used to interpret the results. To my knowledge, the interpretation is not automated, a human eye needs to look at the plate and assign the intensity (-, IND, +, ... ++++).
So the number of bands represents the variety of antibodies, while the - IND + scale reports how much of each band is present.
Take any explanation I offer with a grain of salt. I have zero medical training! You can probably find more (and better) info about the Western blot on the Igenex web site.
Thank you so much for posting this.
Your case is a great example of:
1. How people can test negative even though they do have Lyme,
2. How a so-called "antibiotic challenge" (single course of antibiotics given before retesting) can lead to a (more) positive Western blot. I've read about this a lot, how the Western blot tests for antibodies and not the bacteria directly. In people who have been sick for a long time, the body may have "given up" and slowed antibody production but a course of antibiotics causes the immune system to wake up, produce antibodies to fight infection, and show up on tests.
3. How 1 month of antibiotics does NOT eradicate infection!
If I recall, you also had other diagnoses, like RA? I could be mixing up stories, though.
I never had a 2nd Western blot. I'm not sure at this time (over a year on antibiotics) if it would be worthwhile. I do wish I had one done shortly after starting treatment. I had a couple of bands, but not CDC positive.
Again, thanks for the update and I hope you are seeing improvement with treatment.
PS-Can you remind us of your original W. blot results, for comparison? From your post you were CDC negative before, but you did have some signs?
Also congrats on being CDC positive maybe now they will take you more seriously if you go to a regular doctor if they werent before! I hope all goes well!!
the only thing i heard is that when you take the medicine you get worse before you egt better because the lyme is coming out to fight it so maybe thats why its more active? just a thought
Just a question to you mrs k75... why is it + at one then +++ or ++ is there different positves? or like you have more of the disease in those places?
Sorry if this questions sounds dumb im still a beginer but trying to get it all right with the info!
The list I printed out (and have taped to the kitchen door for easy reference) says that band 58 is unknown but may be a 'heat shock protein' of the Lyme bug. I am guessing that means it could be a part of a Lyme bug, but they're not sure.
Congratulations on the CD 57 increase, and (sadly, but encouragingly) on being CDC positive. Sounds like you are moving in the right direction!!! Glad you are feeling better as well -- a good way to start the new year.