Chronic Fatigue and lymes disease - Myalgic Encephalo...

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Chronic Fatigue and lymes disease

smilingjane profile image
β€’21 Replies

Good afternoon

I am working through illnesses with overlapping symptoms in an attempt to find out what if anything is underpinning or causing my chronic fatigue.

Test results for Lyme disease have come back stating thatI have been exposed to the Borrelia bordorferi bacterium at some time.

Has anyone out there experience of this test on relation to lyme disease.

I have just read that it is possible for the test to show up a false positive with some that are infected with other diseases or who have autoimmune diseases.

I would be interested yo hear of any experience others may have had.

😊

21 Replies
β€’

I'm in the same boat. Been struggling with ME and listening to others badger me about Lyme's even though I had post exertional malise which isn't a symptom of Lyme's.

One test with a positive to one of the Borrelia antigens and I thought I had my answer.

I made a trip to my GP's expecting a course of antibiotics and my life handed back to me. Unfortunately I was told that the positive I had was indicative of an infection - any infection and my bodies response. There needed to be a corresponding positive in other areas.

SO - I wouldn't get my hopes up but make an appointment with your G.P. and keep your fingers crossed.

My results:

B. burgdorferi: Indeterminate

IgM Borrelia p41 antigen POSITIVE

all others negative

Hope that helps

PS: I've been told, and indeed read in some places that German and US labs, but particularly German, are meant to be better at carrying out testing and even a negative Lyme test in Ireland or the UK could in fact be positive!

smilingjane profile image
smilingjane in reply to

Hi Raffs

Thanks for getting back.

My IgG antibodies were positive IgM - negative. As I'm understanding, the IgG is a sign of 'older' infection and IgM current?

I may have that wrong. Maybe it's that my autoimmune disease , (hashis) shows up with this test then?

So basically the Lymes test is a raised antibody test then 🀨

I rang the nurse attached to the test centre and she like you suggested my GP or maybe to email my endo who is super efficient but ... I dont want my GP to think I'm going over his head. Cause he is great too.

Did you get the second test from your GP?

Looks like lymes is another if those controversial, difficult to diognose illnesses πŸ€”

in reply to smilingjane

Lyme disease carrying ticks need to be latched onto you for a long enough time to infect:

cdc.gov/lyme/transmission/i....

So it seems unlikely that many will have ticks on that long but if you do then according to here:

amjmed.com/article/S0002-93...

(246.e3)

Because the IgG response develops in 4-6

weeks, patients with symptoms of longer

duration than this should be IgG positive;

isolated IgM bands in such patients are

almost always a false.

So it would seem to read - if you have a new infection you should be showing +ive on IgG NOT IgM. If you are IgM EARLY ON then its likely false, according to the document.

Same Document (264.e4)

In infections, the host immune system initially produces IgM antibodies; IgG antibodies are usually

demonstrable by about 4 weeks after onset of B. burgdorferi infection.

This seems to contradict the earlier statement - to my little fatigued mind :)

The p41 antigen was found in a number of health controls and hence it not being thought to be involved in Lyme's hence my GP ruling it out as an issue for me. What antigen are you showing positive on?

smilingjane profile image
smilingjane in reply to

how do I send a pic on here that would be simpler. I'm not understanding the report πŸ€”

in reply to smilingjane

I don't think you can, many forums offer it but this is a very basic one.

smilingjane profile image
smilingjane in reply to

Ah okay

It reads:

result suggests exposure to Borrelia burgorferi at some time. If confirmatory testing by immunoblot is required. request BORC as an additional test. Above that is says AU/ML Positive = (sideways v) 15

BB IgG 153.8

BB IgM neg

Hope this is clear?

😊

in reply to smilingjane

As mud!

smilingjane profile image
smilingjane in reply to

Ha!!!

The nurse said that it shows I have infection but that it had probs been around for a while.

It dosnt say which antigen unless... is BB the antigen?

in reply to smilingjane

Now I maybe shooting off the mark so hopefully someone else will come along and correct me if I am wrong but - there are two tests for Lyme's Elisa and Westerblot.

It seems you may have had the Elisa one and that further clarification may have/may be necessary depending on what it has shown. I am assuming, if the nurse knew what (s)he was talking about, that the test has shown something old as mine had but I am not sure if that is an old infection or an old Lyme's infection.

I have looked over my results and trying to see what test it was but cannot work it out from them what test was done.

There is a heading BORRELLA (Lyme Disease) Results

Borrelia LgG Lineblot

then follows 11 IgG antigens that are tested followed by an interpretation result. Then there is

Borrelia IgM Lineblot

followed by 5 antigens

It is page 1 of 2 but I have no page 2 for some reason.

Sorry but that's as far as I can help :(

smilingjane profile image
smilingjane in reply to

Raffs

Thank you for all that investigating.

So, looks like the Linebot was the 2 nd test after the Elisa. And that test is where they test for the individual antigens. Whereas the elisa just shows whether there is infection and then antigens to test for.

Thank you again for all your help.

😊

Sorry, the sideways v isnt on my titchy keyboard did you get what I meant?

smilingjane profile image
smilingjane in reply to

Raffs

Just re-read your response.

I very definately have post exertional malaise. So probs wont be persuading the Lymes. Thanks for that.

😊

interesting post thank you - I cannot help but have often wondered about Lyme's and Veils (wrong spelling), I used to swim in the Cam and the Cherwell.

Good luck with getting some answers. P

smilingjane profile image
smilingjane in reply to peege

Peege

Thanks for your response.

Glanced a couple of your past posts and I see you had some success with Q 10.

Just remembered back when I didnt need energy, Oh sweet beautifull days ...... I used to take them for health optimisation . And I do remember it added to my vitality then.

Do you still use it?

😊

peege profile image
peege in reply to smilingjane

Hi, Yes i do smilingjane. Still take 100mg daily of Ubiquinol. At times of extra activity when I'm shattered I have to take 200mg daily probably for a week to get back on track. Still fatigued all of the time but try to walk every day with the dog. Yesterday I drove 80 miles x 2 through torrential rain and can barely move today (should have taken 200mg)! Im convinced it's helping, recovery is a week instead of 3. P

smilingjane profile image
smilingjane in reply to peege

Excellent!

Interesting to hear the difference it's making for you.

Thinking I'll go back to the Q10 then.

OOI, which brand do you use? I used to buy Pharma Nord gelatine capsules.

😊

peege profile image
peege in reply to smilingjane

Hi, I only get the Ubiqinol 100mg from Healthspan. 60 capsules per pack. Each capsule = 280mg of converted CoQ10 (apparently).

A Naturopath friend (who has ME) suggested I blast my system with 2 capsules per day for a couple of months.

Healthspan have 15% off this weekend. I usually top up my supplies when they have a sale for those times I need to double up.

Hope it works as well for you as if has for me. P x

smilingjane profile image
smilingjane in reply to peege

Thanks for the tip top recommendation peege.

I'll get on the case

😊

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