MS and/or Lyme's disease?

[Brittan]

My neuro did a lyme's test and it came back positive. Now they are looking to verify if what I have is ms or Lyme's or both because Lyme's causes lesions similar to MS. So they may have to do the LP or do a biopsy.

They r/o lupus, sjogren's, ra, and tons of other things.

Does anyone else have lyme's? I am wondering how long I have had it for. Because I spoke with my neuro and he said he had many ms patients come in and they discovered it was lyme's and after a lengthy time on antibiotics they had very minimal symptoms. So he is going to test me for coinfections for lyme's also.

I guess I'm back in Limbo land...lol. Any thoughts on this? Anyone else with a similar situation.

[Twenty Miles]

My first Lyme's test came back with a "positive" (ELISA). My neuro said that test could have a false positive. He then did the Western Blot test "to put it to rest" and it came back negative.

[justmsme1012]

me to

I tested positive for lyme also.... took some antibiotics couple years ago, and it came back negetive, still having issues, so the lyme may have added to my issues or it could have been a false positive.....

[Brittan]

Thanks for your responses.

My neuro did the western blot and it came back positive. It stated that I have had for a long time and it's active now.

I previously took the elisa but it always came back negative but I've heard the elisa test is inaccurate by 30% false negatives ... that's 1 in 3 people are actually positive but received a false negative... that's huge.

Imagine those who are sick w/ lyme's and they do not even know it... so sad.

I guess we'll see what happens.

JustMSMe ... how long did you take the antibiotics for? I've heard if it's a chronic form of lyme's it can take up to 3 years before feeling 90% of feeling back to normal on antibiotics. After taking antibiotics it can come back a false negative there should be a window from the time you stop taking it to the time you take the test or it will come back negative.

Interesting huh? In otherwords, the window is to allow the lyme's to build back up into the body so it does come up correctly not right after antibiotics possibly 3 weeks, 6 and 9 weeks to take it to ensure it is gone.

It's frustrating.

[justmsme1012]

hummm

If i remember correctly, it was about 2 weeks..... memory sucks sorry.... waited a month and retested, it was negitive, but my question is i did have some of the markers, just not enough or what ever to say it was positive, Very confusing.....but i think i took 2 antibiotics for 2 weeks.....

[Brittan]

From what I've read the only doctors who are knowledeable on Lyme's is LLMDs - Lyme Literate MD. If you had some markers depending on what they were you could still have it or a coinfection or it could be something not even related to lymes.

Here's is info on what is considered a positive lymes for western blot.

Western Blot

1. Reflects antibody response to specific Bb antigens

2. Different sensitivities and specificities of the bands

3. Some bands are potentially seen in different bacteria - "nonspecific bands"

4. Some bands are specific to spirochetes

5. Some bands are specific to Bb

6. Specific: 18, 23-25, 28, 31, 34, 37, 39, 58, 83 & 93

7. Spirochetes in general: 41 (flagellum)

8. First immune response if present is usually 41 and 23 KD bands

9. Response to the 31 KD proteins is not usually seen for a year after initial infection


CDC IGG Western Blot Criteria

1. IGG Western Blot 5 of the 10 bands (18,23,28,30,39,41,45,58,66)

2. Criteria based on early Lyme

3. IGENEX adds 3 specific bands (31,83 and 34) and 3 non-specific bands (22,37,73)


CDC IGM Western Blot Criteria

1. IGM WB 2 of the 3 bands 23, 39, 41

2. IGENEX adds 3 specific bands (31,34 and 83) and 3 non-specific bands (22,37,73)


Revised Criteria with Western Blot

1. IGG WB: 2 specific band criteria has demonstrated improved sensitivity and maintained specificity

2. Can diagnose Lyme if any one band (IgG or IgM) of 18, 23, 28, 39 or 58 kDa or if any 2 or more of the following bands are present; 30, 45,41 and 93

3. If negative or require further confirmation, can obtain IGENEX WB (adds specific bands of 31, 34 an 83, which are typically seen in chronic disease)

4. Positive if any one band of 18, 23, 28,31,34, 39, 58 or 83

5. If positive for Borrelia on any test, consider testing for neurotoxins

6. Consider testing for co-infections (discussed below)

7. Check for coagulation defect (See Hypercoaguable State in CFS and FM)

Here's the link: http://www.medhelp.org/posts/Lyme-Di...-/show/1973936

I started the thread above to find out more. I have bands 23 igg and 39 igm. Because I have 23 igg it shows I've had it for a significant amount of time and the 39 igm shows it's active. These bands are 2 of the 3 that are specific to lymes.

If you have your records for the blood tests I would look over to verify which bands you had and see if they meet any of the above criterias because many docs are not as knowledgeable as they should be on lymes.

Hope this helps.