Lyme community says we all have it

[JAH]

I've started treatment for suspected chronic lyme after 3 and a half years of disability with a CFS diagnosis, which started a few months after being treated for lyme disease, by an NHS doctor. I had a western blot when it started which came back equivocal (maybe yes, maybe no) which combined with the symptoms and a suspicious bite which I picked up hiking in the woods in America, which the doctor never saw, but from my description and it being in a lyme area (Virginia) it lead him to a lyme diagnosis. I was put on 2 or maybe 3 weeks of doxy, I can't remember. It's still possible it was never lyme though, but it seems like it probably was.

Also relevant, I had great improvement after 2 weeks of IV antibiotics (about 5 different kinds all at once) with a perferated appendix a couple of years ago, but relapsed about 2 months later. A POTS doctor in london initially said I improved then due to IV fluids, not the antibiotics, as the fluids would have helped with the POTS, but then they did a load of autonomic testing on me and found I only had mild autonomic disfunction and that POTS was only a mild part of what is going on. So maybe it was the antibiotics after all?

This has led me to seek a lyme diagnosis so I could give antibiotics another go again. It seems chronic lyme (if it exists) gets much harder to treat if you wait longer than a few years, so I thought, it's now or never, there are no other treatment options, so I'll give it a shot, if I can find a doctor who will treat me for it.

I also managed to get an Elisa test done recently from my GP recently but it came back negative. I was on a course of doxy for chronic sinusitus (which I still have) and got a bit better straight away, but then got worse and worse, causing me to stop taking them as I felt so aweful, but then I just got even worse still after I stopped taking them and could barely stand up. I felt I could die I was so weak. I started to think that this is what it felt like when I had lyme diseaes, so I thought, maybe I still do?

I started buying doxy myself online and that seemed to stabilize things a bit, but it was still pretty aweful (housebound, struggleing on the stairs, sometimes not even enough energy to watch TV, which is what I usually do all day now due to the chronic exhaustion). I was in a pretty desperate state, I couldn't come off the doxy as I feared I would plummet into that state I went into when I first came off it, where I felt so weak I could die, but if I stayed on it I would feel really rough too, quite a lot worse than my usual CFS state. So it seemed like the doxy had 'stirred things up', so I thought, I can't go on without any treatment, and I can't keep buying doxy myself and taking without being under the care of a physician, so I went to a clinic known to treat lyme in the UK and told the doctor my story. I didn't want to do any tests as I know how unreliable they are, and even if they came back negative I would want treating for lyme anyway. She said I do still have lyme disease and prescribed Ceftin, Artesunate and nattokinase as well as an IV antibiotic which I had to decline due to the cost.

So now I am 1 month into the oral antibiotics (plus the 2 months of doxy I had before). The first week of this new antibiotic combination I felt a bit better, just like how I felt a bit better on the first week of doxy, but just like the doxy I got worse and worse in week 2-3. It's still pretty bad but a slightly better today, better enough to be able to just about write this post.

I've no idea if I actually have lyme or not, but I see no other options so I'm giving it a shot. The professor of infectious diseases who diagnosed me with CFS explicitly said I do not have lyme anymore. But there are some some findings in studies suggesting it could be, albeit quite weak findings. I consider it a long shot, but oral antibiotics don't have too serious a side effects so I'm going to stick with it for 6 months and then see how things are going.

My heart goes out to you, man. You're on a rough road right now, and just am hoping for the best for you, including a little time to play your guitar...JAH

 

[helperofearth123]

My heart goes out to you, man. You're on a rough road right now, and just am hoping for the best for you, including a little time to play your guitar...JAH

Thank you JAH

 

[fibrodude84]

Had some parts come back positive others negative. One doctor isn't worried and the other wants to do 1 month of antibiotics.

Will 1 month even do anything if I have lyme?

 

[roxie60]

From all ive read 1 month will not likely be enough if you have lyme. I have been sick for ten years. I started treatment 4 months ago and im just seeing zome improvement in some symps. Best to find an llmd to have chance at proper treatment. Good luck. If you have no other options maybe 1 mo th better than none but I dont know that for sure. I am on a combination of abx.

 

[TigerLilea]

Many in the lyme community insist everyone with ME/CFS, fibromyalgia and the like all likely have lyme and don't know it.

Many of the symptoms do overlap and many with lyme went undiagnosed or had previous diagnosis like ours.

Now I'm panicked that what if it is lyme. I had the blood test come back negative but so do many who have lyme. I just want to be confident in knowing what's wrong with me so I can begin a game plan and that's different if it's lyme, fibro or ME.

And many in the Thyroid community swear that we all have thyroid disease.

 

[serg1942]

Hi everyone!

Please excuse if you have read this already. I just thought some people who might have missed my request for participating in the survey I am carrying out, could read it in this other thread.

Please read below the explanation of the survey and what data I need. It is REALLY SIMPLE, so PLEASE HELP ME OUT to reach the 100 I need (I have still like 35 so far)

(Note that I am trying to get the data from BOTH, PWCFS/ME with + or - results for Lyme/Co-infections. I am trying to avoid bias, and that's why I am not asking in Lyme-forums, as they would all be PWCFS-LYME +.

Here's the thread where you can write your data:, as other fellows are doing:

http://forums.phoenixrising.me/inde...cfs-fm-etc-with-lyme.32176/page-4#post-497163

And here's the thread on the ME/CFS-research Spanish forum I run, where I am compiling all the information, and from where I'll took the data and draw the statistics from it.:

http://www.sfc-em-investigacion.com/viewtopic.php?p=23496&f=24#p23496

I do apreciate your time, energy and collaboration!

Thank you very much in advance!
Sergio

Given tha Borrelia Infection (which causes Lyme disease), seems to be present in the majority of EM/CFS and similar conditions such as FM, MQS or MS, I have opened this thread so that all of us tested for Lyme disease by any available test can share our results.

As many of you know, most test are quite unreliable, and many doctors known as Lyme Literate MDs perform symtomatologic diagnoses, and treat the infection even when lacking a positive result.

However, there is a test known as Borrelia Elispot-LTT that has demonstrated to be highly reliable:http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3474945/

(Also the LTT MELISA: http://www.ncbi.nlm.nih.gov/pubmed/16876371)

We don't know as of yet any laboratory which performs the exact methodology, that allowed the team who undertook this study to reach such a high sensitivity and specificity. There are already a few laboratories running this test. However, the most known and used laboratories to perform this test is Infectolabs (Germany): http://www.infectolab.de/

According to some Lyme expert doctors, about a 90-95% of people with ME/CFS are testing positive by the LTT test. This percentage is similar to the 70% that many doctors had been stating over the last decade in books, conferences, etc. (observed normally by running the battery of tests offered by IgeneX in the USA). It'd be normal that the LTT sheds a higher percentage, given the theoretical higher reliability of this test and the fact that people is being slowly better diagnosed by using the canadian criteria.

Because of this and due to the fact that many doctors believe that actually the borrelia infection cold be the actual cause of ME/CFS--or at least to contribute significantly to its pathogenecy, I think it would be really useful to compile our tests results here, in order to get our own statistics and conclusions.

IT WOULD BE ENOUGH TO JUST WRITE:

I HAVE THE DIAGNOSIS OF "X" AND I HAVE TESTED POSITIVE/NEGATIVE FOR LYME/ANY OTHER CO-INFECTION BY THE TEST/S "Y"

 

[Antares in NYC]

Also relevant, I had great improvement after 2 weeks of IV antibiotics (about 5 different kinds all at once) with a perferated appendix a couple of years ago, but relapsed about 2 months later. A POTS doctor in london initially said I improved then due to IV fluids, not the antibiotics, as the fluids would have helped with the POTS, but then they did a load of autonomic testing on me and found I only had mild autonomic disfunction and that POTS was only a mild part of what is going on. So maybe it was the antibiotics after all?

Hi Matthew,

Welcome to the forum. I read your post and something you mentioned really clicked with me. I highlighted the passage in your quote above, and wanted to share a similar experience.

For your reference, I have been dealing with ME/CFS for almost 16 years now. Sigh... This very year I was tested positive for Lyme after an ELISPOT test, and also positive for the Bartonella co-infection. My neurological and cognitive symptoms have always been terrible, from the start, and there were only a few occasions in the last 16 years when those symptoms vanished for a few days, before coming back again. Last year I wrote about that strange phenomenon in a thread called The 3 times my ME/CFS almost completely vanished.

The first two times I experienced such short-lived relief happened while I was traveling abroad. The third time my severe neurological/cognitive symptoms almost completely went away happened in 2011, after I was hospitalized for more than two weeks for a major surgical procedure (unrelated to ME/CFS). This was also the most vivid, longest and clearest my mind had been in 16 years. During those two weeks I was under heavy monitoring 24/7, with IV serum fluids, major painkillers... and a cocktail of several IV antibiotics supplied intravenously for the duration of my stay!

Matthew, this little fact didn't dawn on me until I read your post!
This is major for me; my memory is so awful I have been unable to close the loop on this puzzle.

That summer of 2011 my mind felt clearly and distinctively improved within a week of my hospitalization. Not only did my memory and concentration come back, but it felt as if I had never been affected, as if I was just waking up from a nasty decade-long nightmare. What's more, even though I was under heavy painkillers due to the major surgery, for a few days my mind was clearer and sharper than it had been for a decade. I was amazed of what was happening.

A couple of days after I was discharged from the hospital and sent home to recover, the brain-fog and memory issues came back and settled, and never went away since then. It was quite depressing to fall back into the abyss... but the experience gave me a very clear indication that whatever had afflicted me for so long could go away. It gave me a glimmer of hope.

Since that surgery in 2011 I thought a lot about what conditions made the difference during my hospital stay. What did happen during those two weeks that brought my brain back, fully functioning and clear? I obsessed about the pristine cleanness of the hospital environment. I read about the IV fluids as the possible culprit, as it increases the blood volume... but it didn't make sense to me. I have had IV drip with serum during other hospital stays, and I have also had IV vitamins and mineral infusions, but they never produced this quick sense of recovery at all.

Now it is clear to me: it had to be the IV antibiotics. That's the main thing that was different and unique to that specific hospital stay.

For those two weeks I had bags of abx connected to the IV drip twice a day (every 12 hours), and the nurse would also inject another abx into the IV drip line several times a day. The second week of my stay they decreased the dosage, but still, I was getting massive doses of antibiotics administered intravenously day after day, on account of the large and deep surgical procedure.

Three years later, in light of my recent and unequivocal diagnosis with Lyme, it all makes a lot of sense.

Thanks for your post. You never know when sharing our own experiences may help others. Your post definitely brought a 'eureka' moment for me, and helped me remember details that are extremely difficult to recall due to the severe cognitive issues that plague me.

PS: I will try to call the hospital and see if they can tell me what IV antibiotics I was given during my hospitalization.

 

[Antares in NYC]

Hi everyone!

Please excuse if you have read this already. I just thought some people who might have missed my request for participating in the survey I am carrying out, could read it in this other thread.

Please read below the explanation of the survey and what data I need. It is REALLY SIMPLE, so PLEASE HELP ME OUT to reach the 100 I need (I have still like 35 so far)

(Note that I am trying to get the data from BOTH, PWCFS/ME with + or - results for Lyme/Co-infections. I am trying to avoid bias, and that's why I am not asking in Lyme-forums, as they would all be PWCFS-LYME +.

Here's the thread where you can write your data:, as other fellows are doing:

http://forums.phoenixrising.me/inde...cfs-fm-etc-with-lyme.32176/page-4#post-497163

And here's the thread on the ME/CFS-research Spanish forum I run, where I am compiling all the information, and from where I'll took the data and draw the statistics from it.:

http://www.sfc-em-investigacion.com/viewtopic.php?p=23496&f=24#p23496

I do apreciate your time, energy and collaboration!

Thank you very much in advance!
Sergio

Hola Sergio!

Count on me for this one. I'm increasingly convinced there's a link between Borrelia and CFS, and my own experience is leading me to that conclusion. To make a very long story short:

• Suffering from ME/CFS for over 15 years, bouncing from doctor to clueless doctor, being misdiagnosed with unrelated stuff, most often dismissed and been told "we don't know what you have".
• Finally diagnosed with ME/CFS by a major CFS specialist in the summer of 2013. Yes, it took that long!
• Recent ELISPOT and WB test came our positive for Lyme, and also positive for the Bartonella coinfection.

Aside from the dismal state of research funding for CFS and Lyme, one major reason why most lab tests for Borrelia are worthless is because they only test for ONE strain of the bacterium. The standard Elisa and WB lab tests only look for the original Borrelia Burgdoferi strain. In reality there are more than 300 strains of Borrelia, and only the ELISPOT test looks for those.

I think I may be the poster boy for this theory, so let me know if you need my help. Please feel free to email me directly. Y por cierto, conmigo puedes hablar directamente en español, pues soy bilingüe. Buena suerte, Sergio y no dudes en ponerte en contacto conmigo si necesitas mi testimonio. Ciao.

 

[Valentijn]

@Antares in NYC - with long term infection and lots of neurological symptoms, ceftriaxone is a good antibiotic to get in IV form, as it can get into the central nervous system. A week after finishing 6 weeks of it, I felt pretty damned good. Though a week after that I had to start the 2nd antibiotic to get rid of the cyst forms, which has me feeling crappy again

Though having both Bartonella + Borrelia can complicate things somewhat. So hopefully you've got a good doc experienced in that area.

 

[justy]

@Antares in NYC - IT ALSO TOOK ME 15 YEARS TO GET A DIAGNOSIS OF m.e/cfs (SORRY CAPS LOCK NOT SHOUTING) and now after being sick to varying degrees for nearly 20 years I have a diagnosis of Bartonella, Chlamydia pneumonia and possible Lyme (my Elispot LTT was negative, but my M.E doctor thinks I have it for various other reasons and we are going to re test)

These long term chronic infections have played havoc with my immune system which doesn't work terribly well, I am always sick with something, but the bugs/infections/viruses just linger as I don't mount a good immune response.

My neuor symptoms have also been fairly bad in some areas, I guess due to the Bart, but I also have had a lot of psychiatric symptoms which is common with Bart, and led to many year of misdiagnosis with anxiety, panic attacks etc. I have a lot of de realisation issues as well as memory problems - my memory is similar in some ways to my 75 year old mothers who is slowly losing her ability to hold onto information.

I am hoping to start treatment soon - although I have no idea where the money will come from! good luck with your journey.

 

[brenda]

@Antares in NYC

Hi

I got a cfs diagnosis 14 years ago but that was when I am certain I contracted Lyme as I suddenly got so much worse with Lyme symptoms, but have previously suffered cfs symptoms undiagnosed for as long as I remember (mercury poisoning at 6 months). LTT plus Elisa.

 

[serg1942]

Hola @Antares in NYC,

¡Qué sorpresa leer español por aquí!

Thank you very much for sharing your data. Here's the post on my Spanish forum where I have posted and translated your text pls verify the anonymity):

http://www.sfc-em-investigacion.com/viewtopic.php?p=23784&f=24#p23784

May I ask by which test were you positive for Bart?? And, was the WB, IgM or IgG??

Thank you also for offering your help! I actually need it. I have compiled, so far, about 40-45 cases, and it is my intention to reach 100.

If you think about it, this is like an informal observational trial. So my goal is, once having the statistics drawn (I am already designing the Excel file), pass it onto some ME/CFS and Lyme associations from different countries, in order for them to try to take a step further, and do the same, but under the strictness of a study, that would ensure a scientific value.

So, if you could help me to get more data from patients, I would really appreciate it.

I don't want with this first survey to draw any conclusion about the role of Lyme in ME/CFS. I just want to confirm or deny the high prevalence of Lyme in ME/CFS patients, and also break down the percentages according to the different tests performed.

I need to emphasize the importance of trying to avoid biases in the collection of the data. For instance, I am not getting data from Lyme forums, cause most would be people previously diagnosed with ME/CFS, and Lyme +... So, what I am trying is to try to know the veracity of the data. How? Well, I do know many patients who have shared their data--and if I don't know them, I am asking people I know to confirm that they are "trustworthy" patients. Finally, I am also getting "in situ" data from the clinic where I am at the moment getting the ABX IVs, so I can actually see their tests results...

So, if we the above in mind, you can get data from more patients, the results will be more much more valid!

Let me know ok?, I am going to send you my FB by PM in case you use it.

Un abrazo, gracias, y hasta pronto!
Sergio

 

[Snow Leopard]

There are alternative views of course. Based on the same evidence someone might say that most of these diagnosed with Lyme do not have it, they used to and its gone, and they are dealing with post-Lyme disease.

This is my opinion too.

It is just unfortunate how little study there has been on post-Lyme disease, investigating the underlying biology.

 

[justy]

This is my opinion too.

It is just unfortunate how little study there has been on post-Lyme disease, investigating the underlying biology.

There is a difference, of course, between what is termed post Lyme disease where people knew they had Lyme, were treated and in the long run still had symptoms and those of us who have chronic Lyme because it has never been diagnosed and treated and has been allowed to run rampant in our bodies for years, and sometimes decades. Post Lyme only refers to those who have been treated for Lyme.

Of course if you are in the second scenario like me then any symptoms left after treatment could be long term irreparable damage from the Lyme itself.

 

[serg1942]

Hi @Snow Leopard,

Well, actually, if you have a positive LTT, or a high IgM or quite high IgG, the infection is active (not talking about possible cross reactions now)... If on the other hand you have a PCR, or a DNA sequencing, there's no way to know if the infection is active or not... So, these are ways to differentiate...

Also we need to have into account that, if you don't have the infection anymore, you shouldn't have DNA floating in your bloodstream, if the infection is not present or even if it is latent...

But anyway, it is not my goal to address this matter. Just to assess the percentage of people properly diagnosed with ME/CFS, and negative/positive for Lyme. that's my only target.

Best!
Sergio

 

[serg1942]

Hi @justy!

Excuse me!, Bc the data I am compiling is anonymous, I am not sure if I already got yours, or this is the first time you are sharing it... Sorry, my brain...:thumbdown:

 

[justy]

Hi @justy!

Excuse me!, Bc the data I am compiling is anonymous, I am not sure if I already got yours, or this is the first time you are sharing it... Sorry, my brain...:thumbdown:

Think you got mine from page 1 or 2 of this thread... as you say so hard to rememeber, but you definitely have it.

Hope all goes well with your Iv's.

 

[serg1942]

Hello @brenda!

Thank you very much for sharing your info for the survey I am undertaking.

Here's your text and my translation right below:

http://www.sfc-em-investigacion.com/viewtopic.php?p=23785&f=24#p23785

Pls check the anonymity for yourself,

Best!!
Sergio

 

[serg1942]

Hi @justy! thank you for jogging my memory! I didn't want to add your data twice!

Thank you also for your good wishes! actually, it's been both hard and encouraging... It seems to be accumulative, meaning that by the last day I get the IV (on Wednesday, since Monday), I crash that day and the next... but then over the weekend it seems I am actually feeling better than before starting the ABX. I cannot tell for sure, so I will be cautious and wait.

Anyway, in 10 days I am going to request to have comprehensive tests done to check the status of both my immune system and the infection, to really know if the treatment is working...

I'll let you all know!
Best!

Sergio

 

[brenda]

@sergiobt29
Sorry I wrote that wrong. Should be:

CFS was undiagnosed, lifelong due to mercury poisoning from teething powders at 6 months old (Pinks Disease). Gained a CFS diagnosis 14 years ago after worsening symptoms but found out 7 years later with self diagnosis that it was Lyme confirmed by LTT and Elisa. Guessed it was due to walking in woods at that time. Have found out what is wrong with me from Dr Google.