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CFS and Lyme? Not sure of anything. Help.

Rossy191276

Senior Member
Messages
145
Location
Brisbane, Australia
@Rossy191276 - Did you see the SBS's Insight discussion on Lyme Disease in Australia? It sounds like a lot of the labs that test for this in Australia do not actually have proper means of testing/accreditation
http://www.sbs.com.au/news/insight/explainer/what-lyme-disease-and-does-it-exist-australia and actually TV debate/discussion http://www.sbs.com.au/news/insight/tvepisode/tick-sick

They talk about accreditation around30- 33.5 min mark in the show.



I haven't been tested for lyme or anything similar, because I have been told that you can't test properly for lyme in Australia. But it does sounds like to me like ME/CFS cycles and perhaps you were just starting to improve anyway at the time of taking antibiotics or it could have been placebo. Just a theory (don't take my word for it).

I go through cycles without any medication. Although my very first bout of whatever illness I have was brought on or exacerbated by probiotics. I got the worse herx reaction every and matches up to pretty much all the symptoms you get with CFS/ME. Over the last few years I got much better, but I go through cycles and my symptoms seem to jump around within my body with each cycle.

Hi Wonderoushope yes I have been watching the programs in Australia...It's a pity that they are all so focused on whether Lyme exists in Australia when such a high percentage of people go overseas...In my case I likely got infected while working in the USA and spending some time running in forests where lyme is present...

Regarding not being able to be tested properly in Australia I got the same results from both Australian and German labs so at least there seemed to be conformity there...In my case since last writing here I have found out from the Australian lab that my 'indeterminate' PCR test was actually a positive that they have to report as indermnate because they only found the lyme DNA in my blood 1 out of 3 times they did the test...But my understanding is that if they find it with PCR testing then you almost certainly have Lyme...

But as many of you know that doesn't solve the problem of knowing whether my symptoms are now caused by active lyme or whether the Lyme is gone and I now have ME/CFS...If I had to bet based on my research and experience I would say I have me/cfs....I haven't had herx reaction to antibiotics...I can't tell whether antibiotics have helped...I actually got better without treatment for a month early this year but when I started exercising again it triggered a downward spiral...My main problem is extreme exertion intolerance...When I first got sick I had been on a paleo diet for a couple of weeks and I think its likely that combo of lyme infection and dietary metabolic changes might have triggered me/cfs...

Thanks for your reply and all the best to you!
 

Rossy191276

Senior Member
Messages
145
Location
Brisbane, Australia
@el_squared (Laura),

One question you might consider is, "do I want to treat based on mostly symptoms or do I want to get more testing"? your test results are not real definitive.

you also might try looking for another practitioner. it's possible you might find one that you can trust and respect their experience and opinions.

chronic Lyme is such a quagmire.

just to muddy the waters a little more, you might also consider these statements by Dr. Davis and Dr. Naviaux..



here is the web link:

http://www.openmedicinefoundation.o...-fatigue-syndrome-q-a-with-robert-naviaux-md/

Thanks for this article Voner its very relevant for my decision making and I've sent it to my doctor..
 

Art Vandelay

Senior Member
Messages
470
Location
Australia
@Rossy191276 - Did you see the SBS's Insight discussion on Lyme Disease in Australia? It sounds like a lot of the labs that test for this in Australia do not actually have proper means of testing/accreditation
http://www.sbs.com.au/news/insight/explainer/what-lyme-disease-and-does-it-exist-australia and actually TV debate/discussion http://www.sbs.com.au/news/insight/tvepisode/tick-sick

They talk about accreditation around30- 33.5 min mark in the show.

Statement from one of the labs mentioned on the show about some of the spurious claims made: http://www.australianbiologics.com.au/in-response-to-insight-sbs
 

CCC

Senior Member
Messages
457
Regarding not being able to be tested properly in Australia I got the same results from both Australian and German labs so at least there seemed to be conformity there...In my case since last writing here I have found out from the Australian lab that my 'indeterminate' PCR test was actually a positive that they have to report as indermnate because they only found the lyme DNA in my blood 1 out of 3 times they did the test...But my understanding is that if they find it with PCR testing then you almost certainly have Lyme...

That Australian lab wasn't based in Geelong by any chance, was it?

How long did they take to get the result back to you?
 
Messages
47
Hi there,
So with my health declining even more in recent years, I went to a functional MD outside my healthcare insurance. Recently, the doctor diagnosed me with Lyme through two alternative tests -- the Advanced Laboratories blood culture and the Igenex testing. (I appear to be "indeterminate" by the Western Blot interpretation.) I am already a CFS patient and have diagnoses of Celiac Diease, fibro, IBS and SIBO (small bowel bacteria) and a neuro movement disorder. I just told my practitioner at the Stanford Chronic Fatigue Syndrome clinic and she warned me against doing treatment for Lyme, because they at the clinic don't believe these tests. I just don't know what the hell to do!
Anyone have any thoughts on this?
thanks,
Laura

I've been to a few meetings in London at the holiday inn.

It would be far to say the NHS have been following what happens in the US.
Largely the insurance companies put payed to Lyme Diagnosis.

But the governments also know there was a epidemic back in the 80's.
So the more that can confuse everyone the better for them.

It's not the positive test that's to dought but the negative.
There's about a 3% chance. Of a false positive so that garentees the answer.

And a 50% change on a false negative.
Which does not garentee anything.

They reduced the antibodies to one that being C6 OSP In the U.K. and in the US
Yale used A OSP. That was to remove the 3% that might be false negative.

While removing more than 50% postive patients.
 

Rossy191276

Senior Member
Messages
145
Location
Brisbane, Australia
That Australian lab wasn't based in Geelong by any chance, was it?

How long did they take to get the result back to you?

I used Australian Biologics... The tests came back between 3-6 weeks from memory... I looked into getting the co-infections tests done in Geelong but they seemed so disorganised that I ended up doing them in Germany with Armin labs
 

Cheesus

Senior Member
Messages
1,292
Location
UK
@Mel9

I do not know why, but there is a high chance of false positive when used as a standalone test:

PCR positivity in seronegative patients suspected of having late manifestations of LB most likely represents a false-positive result.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1195970/

At some point in the next few years someone will probably make next generation sequencing available for Lyme testing, which is the kind of technology uBiome are currently using for testing the gut microbiome.
 

Mel9

Senior Member
Messages
995
Location
NSW Australia
@Mel9

I do not know why, but there is a high chance of false positive when used as a standalone test:



https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1195970/

At some point in the next few years someone will probably make next generation sequencing available for Lyme testing, which is the kind of technology uBiome are currently using for testing the gut microbiome.

But: Beware of papers with Gary Wormser as an author. He seems to be a well known 'Lyme denier'.

I agree, though, that It will be good when Next Generation Sequencing is used routinely for diagnostics.
 
Messages
47
But: Beware of papers with Gary Wormser as an author. He seems to be a well known 'Lyme denier'.

I agree, though, that It will be good when Next Generation Sequencing is used routinely for diagnostics.

Yes I know that's happening ELISA and imunoblot is used for the first stage.
Test I don't have the capsity to read all the artritical as I have a phone it's hard for me to down load.

I gather Australians have been using American tests and the antigens are not
quite the same. So that makes a difference.

So a negative first stage does not mean
a negative second stage.
However the U.K. And Yale university it seems designed a similar test.
The UK NHS used C6 OSP and Yale used A OSP.
This helped iliminate 50% of the positive testing. To iliminate so I read about the
3% of the false positive.

Second stage by saying the tests are inaccurate totally be they false positive or false negative allows the skeptics to get a foot in the door and twist it.
It's hard enough trying to get a straight answer out of your doctor.

I have been to 5 meetings in London
and read info on the net.
These are professionals.

They sometimes were not making it clear
there were several antigens involved in the full test.

It's mentioned 28 on John Caudwell site.
Whereas the NHS lab were only using 2
That being bird and sheep.
What ever the Latin names are.

The initial test is sheep then sometimes bird.

I was told C6 OSP was used.
Hence that misses a lot of positives.

Other labs in Germany and US use A,B and C6 OSP in combination.

So the stories grown government denial.

Natural Tick species verses imported species in Australia.

There is an epidemic across Europe and England seems to have Miss out even encephalitis which is from Tick also seems to be missing.
Yet Tick was notifiable in Scotland.

My GP still refuses to believe me he along with ex number of NHS doctors have not been interested in going to the talks on Lyme.

I told him that tree's next to the surgary are full of them.
The superstition starts because the nymphs and Egg are so small plankton sized. So doctors in their aragance have tried to make out its a mental health issue. Any excuse.

Then the story grows a tail.
It goes on for 10/20 years an ad soon as some one says it's not real. It goes backward.

One Tick can lay 20,000 eggs which you probably find hard to see.
That's the hazard we have.
Wearing long sleeves and trousers where the baby tick will just fail straight throw. You never see them in your home.

Those Tick preditors have not multiplied
at the same rate. A type of nematode worm being one which you can buy from
garden supplies on the net.

Causes a fungus in other insects as well.

What I believe has killed off the natural preditors is electropollution and not burning the land at the end of the season. To keep the tick down.

I am having to go to court because my local council refused to listen to me.
My husband quite literally was killed by Tick. My two cats had Lyme test and I had 3 positive tests. Yet my GP's in denial. Or my several GP's are.
One said he was waiting for the shit to hit the fan. So be it:sluggish:

The governments officials figures for Lyme Disease is 2 to 3000.
John Caudwell 45,000 in the U.K.

There is no national servey all we know is what's being said by Chris Packham in the U.K. The UK government try to make out its a dog problem. On UTub.com

50% of people own a cat or dog.
The rest my have a tree or potentially a large tree near their home. That tree acts as s caterpult. Keeping the surround area cut short. Does not make much difference. Because the tree is where the tick are going to go.
Even tree surgeons seem not to know.
Pest control just as bad.
Tick are not always visible to the naked eye. Till they suck blood.

Lyme is sexually transmitted mitted.
We are in for a hell of a rid.

So the skeptics can have a go as much as they like recycling information and then denying.

It's the Tick who win.
 
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