Compile the % of PWCFS/FM/etc. with Lyme

[JBB]

Re the reliability of this poll: How about we have a "general" poll section on PR to post small surveys like this? It would be useful for all sorts of stuff.

Best wishes,

J

 

[Helen]

Hi @serg1942 ,

I hope you are doing better and better on the IV abx! We are eager to get another ME-doctor !

I was diagnosed with ME according to CCC based on symptoms that I had for 20 years. I have also typical signs and symptoms of neuroborreliosis except for the white cells in spinal fluid that is a must according to the official critera for NB in Sweden. Doctor friends tell there is no doubt I have NB , but I haven´t got any IV abx due to the official criteria (though at least three drs would like to prescribe it). Symptoms and signs are getting worse and worse since 4 years ago. I have an appointment with KDM at the end of October.

If you would like to get my test results from Infectolabs for Lyme and for co-infections, just PM me your e-mail address.

IgG ( 240 a year ago -now 1137 (ref > 15 positiv)
IgM (neg " -now 46 (ref > 1.1 positiv)

I have had courses of Doxyferm for months during the past year. I haven´t , so far, got any explanation to the increasing IgG and IgM antibodies, or to the increasing sign and symptoms. I also have a high C3 and C4 just below ref range.
No explanation to this.

If you have any comments to my results, please tell!

Best,
Helen

 

[JBB]

Hi @serg1942

Just got my results back. I am positive by PCR so please add me to your list...I have posted my results here:

http://forums.phoenixrising.me/index.php?threads/igenex-results.32911/


Best wishes,

JBB

 

[maryb]

Diagnosed ME by several ME doctors in the UK and Belgium (got sick 9yrs ago) Meet all criteria for ME?CFS

2014 - Positive Igenex test including HGA, IFA, also positive epitope test on band 31kda (was IND on previous one)
2014 - Positive Redlabs, CPn, Yersinia,
2014 - Negative Lyme LTT Infectolab >2

 

[serg1942]

Thank you very much @maryb! I'm going home tomorrow, so next week I will add your data and will finish the survey! I'll let you know!

Best!
Sergio

 

[maryb]

@serg1942
thanks Sergio, well done on getting through the IV treatment, good luck, hope you see some major improvements and you're able to get on with finishing your studies.

 

[cigana]

I tested positive for borrelia by PCR (RED labs) and confirmed by genetic sequencing. If you need for info let me know.

 

[Hip]

I tested positive for borrelia by PCR (RED labs) and confirmed by genetic sequencing.

I haven't heard of genetic sequencing as a means to test for Borrelia. Which test was that, and how reliable is it considered to be?

Do you live in a Lyme area of the UK, by the way?

 

[Min]

I have tested negative for Lyme by the UK's standard blood test, but positive with coinfections (including microccoci on the red blood cells) by private live blood dark field microscopsy.

I am unable to access any medical treatment for it.

 

[cigana]

I haven't heard of genetic sequencing as a means to test for Borrelia. Which test was that, and how reliable is it considered to be?

Do you live in a Lyme area of the UK, by the way?

All I know is that when RED Labs (Belgium) get a positive by PCR, they like to confirm this by sending the sample to Liege University who do the DNA sequencing. I can't remember the exact chances of a false negative for the sequencing, but it was very low (my doctor either said 1 in a million or 1 in a billion, I can't remember).
So I know they found Borrelia, but I suppose I don't know how significant that result is - i.e. could it be found in many people with this test who are not symptomatic...if you look hard enough do you always find it?

I live in London, so I was quite surprised to find this out (I also had Bartonella and Rickettsia, which kind of confirms to me I've been bitten by a tick carrying something). I have however visited a few Lyme areas over the years eg. the Scottish highlands and the Rocky Mountains.

 

[serg1942]

Hi @cigana, thank you very much for adding your info! Could I ask you weather you have been diagnosed with ME/CFS and/or meet any of the recognized criteria?

Hi @Min! Thanks! May I also ask you if you have been diagnosed with ME/CFS and/or meet any of the criteria? Also, could you please let me know which tests did you have done?

Best!
Sergio

 

[Min]

Hi @Min! Thanks! May I also ask you if you have been diagnosed with ME/CFS and/or meet any of the criteria? Also, could you please let me know which tests did you have done?

Yes, I have been diagnosed with and meet the criteria for myalgic encephalomyelitis. My ELISA test came back negative but Lyme spirochaetes and co-infections were visible on several private darkfield microscopy blood tests. Our health service in the UK will not accept the latter as valid.

The only insect bites I recall were when on holiday in Croatia.

if I were a dog I would be treated; because I am a human being I am refused essential medical treatment and instead offered only graded exercise and cognitive behavioural 'therapies'.

 

[cigana]

Hi @cigana, thank you very much for adding your info! Could I ask you weather you have been diagnosed with ME/CFS and/or meet any of the recognized criteria?
Best!
Sergio

I have no official diagnosis but I meet the Canadian criteria.

 

[roxie60]

@serg1942 Have a good trip. Look forward to the compiled results.

@Min sadly true dogs and cats get better diagnostics and treatment than the horrible guidelines humans are subject to by the CDC and IDSA. There must be a special lace in Dante's hell for doctors and politicians that perpetuate the lies and denials regarding lyme and co-infections and the damage being done to thousands...

 

[paolo]

Hi, after many years of suffering with a CFS-like disease, I've discovered to have an active borrelia infection (positive PCR in periferic blood). I've been taking specific antibiotic treatments for almost six months but I've had only temporary improvment.

How many patients with CFS-like symptoms do have a borrelia infection? How to treat this infection?

Thanks so much for your attention.

 

[Hanna]

It seems that numerous members here discover after years of CFS diagnostic that they are also positive for a Tick Born Disease.
You may search for "Lyme" in the box in the upper right corner and you'll have access directly to the threads that are dealing with the problem.

I have been treating lyme and co with antibiotics for 6 months and herbals for 9, with the support of a LLMD. So far, I had some improvement (the first one in 16 years of illness) but experience also a setback lately.

 

[paolo]

It seems that numerous members here discover after years of CFS diagnostic that they are also positive for a Tick Born Disease.

Do you think that Lyme disease is the real illness behind our CFS? Do you think it is treatable?

 

[Hanna]

I don't know Paolo, maybe yes. I have decided to give the Lyme treatment enough time to see if it makes a real difference. Lyme is known to cause immune dysfunction in patients, so you may be prone to suffer from ongoing viruses etc too.
My health problems began 17 years ago with EBV infection. Maybe, there is some chronic reactivation of the virus + other things. I can't be properly tested where I live.

I know a few patients who suffered from chronic lyme for years and where also house bound, and are symptom free now (after one to 3 years of ABX), but they still take herbals on a regurlar basis to keep their health and prevent the bugs to multiplicate. In fact, there is no real cure known.

 

[paolo]

I have been suffering for the same number of years as you. In my case during the first four years I had a recoveries and relapses then -after an EBV infection- my illness became stronger and without recoveries.

My EBV IgG antibodies disappeared after some months and I'm now investigating this issue with an immunologist, after some personal studies in Immunology and Immunodeficiencies.

Did you mesure your EBV IgG recently?
What kind of test did you do for Lyme?

Thank so much for your kind attention, Hanna.

 

[paolo]

Hola Sergio,

I have a CFS diagnose and I have a positive PCR for Borrelia burgdorferi sensu lato in periferic blood. I test positive for Chlamydia psittaci IgM too.

PS- I will share the statistics here.

I would like to see the statistic you have to share. Hasta luego!