Lyme Disease?

I’m wondering if some of the symptoms I have are Lyme Disease made worse by the extreme stress of withdrawal.

 

I have been ill for decades and had the bullseye rash in the early 90s and have never been right since and become progressively more unwell.

 

Does anyone else here have Lymes?

 

If so which test did you have and was it positive?

 

What treatment have you tried and did it help?

 

Thanks!

Ajusta: We don't want to speculate about other diseases. Many have health anxiety, so the withdrawal is enough.

I had a lot of these symptoms before a I took diazepam.

 

I don’t know what is withdrawal and what the diazepam has been covering up.

 

I was definitely infected because I had the rash.

Did you get checked out during the time you had the rash? I know there are several kinds of tests you can do and some are more accurate than others. Doesn't hurt to look into it.

I only realised it was Lyme rash once a I got online in early 2000s. My GP back in early 90s didn’t know what the rash was and after a couple of months it went away.

 

Looking back it was after that I started to get ill more often.

 

I think I had Elisa test in 1997 when I got very ill and ended up with ME diagnosis and bedridden for a couple of years. That must have been negative. I need to check it did get done though.

 

I have never had other testing done.

 

It wasn’t until yesterday that I realised that the rash is related to Lyme not just a tick bite.

 

 

Hey Ajusta,

 

I’ve just been diagnosed with Lymes ... they think I’ve had it for years dormant and that stress of WD / medications has brought it up. Explains a few things but now v hard to work out what’s WD and what’s Lymes which is not fun! Plus hard to treat as it requires lots of supplements / detoxing heavy metals / antibiotics which all complicate WD.

 

I had tests in German lab Armin but that’s not recognize, so also got Western Blot and Elisa.

Lymes is tricky as bloods can be contentious and get false positives and false negatives due to cross reactivity... so often docs rely on symptom based. Which symptoms pretty much mimic benzo WD 🙄

 

Get the WB and Elisa and go from there, that’s my suggestion...

I’m waiting on spinal tap to see if it’s gone to my brain, fun fun.

 

Feel free to pm for any advice or queries, struggling with Lymes and benzo WD both being so misunderstood is an absolute nightmare I wouldn’t wish on my worst enemy xxxx

Hi,

 

Thank you so much for replying.

 

I got hold of my medical records last eeek and the rash was actually 1987 a couple of weeks after a I got back from Germany and was covered in ticks! I had thought it was much later.

 

I am thinking about the Tickplex test - I know it is not recognised but wonder if it would be more accurate?

 

Did you get the CD57 test as well? Did that tell you anything. Did you have the Elisa Spot done via them?

 

I’m in the UK so also trying to work out best place to get Elisa and Western blot. For NHS to recognise it needs to be checked via reference lab at Porton Down I think.

 

It is interesting that yours showed up in blood after a long time. How long has it been?

 

Are you in the US.

 

If I do have it it is definitely in nervous system and possibly muscles.

My pleasure Ajusta!!

 

I’m in Aus sonits not even ‘tecognised’ Here... but as I spent time in the US a few years back it’s taken seriously. But they do believe in ‘Lyme like’ illness plus things likes rickettsia which I also have, coningections.. 🙄

 

I’ve never heard of tickplex, I spent 2000 on German testsvthat lyne docs recognize but mainstream doesn’t so it’s a hard one...

Even with positive tests they may not meet the ‘cdc’ requirements which is the requirements in tests you have to meet to be formally diagnosed... it’s so confusing.

 

I did get Cd test and it was v low, only 40. Also had HLA testing to show genetic predisposition to chronic Lyme and mould etc.

I had Elisa and w blot through standard Aus testing panels.

 

Go down the recognized path perhaps to start and keep costs down. Also seek out what they call an LLMD or Lyme literate doctor. Nhs guidelines are similar to here but at least they recognize you can catch it  inthe uk. My folks are English so I’ve spent many trips there too... so really who knows when I got it!

They can’t say when I got it... but I got symptomatic after camping in bush here in south west WA late 2016. The chronic pain and anxiety is what sent me on the benzo spiral...

 

Sorry a lot of info but I hope it helps!!

Thanks!

 

Tickplex is the Armin Labs test.

 

I can’t get to a LLMD as pretty much housebound and completely unable to travel outside of town where I live. They are very few and far between in the uk.

 

Did your symptoms get much worse in withdrawal?

Oh is it? Ha oops!

Do WB and Elisa first, that’s my advice. Then see from there...

 

Sorry to hear you’re housebound, it ducks 😢 you’re not alone!

I’m not much better I get out for small windows and doc appts.

 

There are Lyme docs that will do Skype appts? Some in Aus even that could do overseas consult.

 

My symptoms got much worse a few months after my WD last year... hence I ended up back on them thinkingbit was all psychosomatic as all the docs told me.. but I think it was a combo of both...

I’m now the worst I’ve been in the 2 years... part medication part virus... and a lot of stress making it all much worse... it’s all feeding each other!!! So frustrating 😢

 

I am in complete hell symptom wise.

 

Full list is  in ‘Progress Log’ link in signature.

 

Decided to get the Armin stuff done first - if that shows anything might then be able to persuade GP to do other testing for verification.

 

It is such a long time I have no idea if it will show up in blood test.

 

Apart from antibiotics what are you doing to treat it.

 

Hi Ajusta,

 

Sorry you are having so many tough symptoms.  I was diagnosed with Lyme disease this year after 5 years of weird symptoms.  Many were due to Benzos but, the benzo symptoms seem to have pretty much gone away.  Hard to tell the difference between benzos and lyme symptoms for sure. 

 

Testing for Lyme seems to be all over the place and it's so hard to know what tests are really reliable.  I had 2 Western Blot tests several years ago and both came back negative.  This year, one band out of 5 came back positive but test still inconclusive.  A DNA test from DNA Connexions lab for Lyme did detect B. burgdorferi Lyme disease though.  They are located in the US but, may test internationally as well?  Their phone number is 1.888.843.5832. 

 

 

 

 

 

 

Thank you!

 

Sorry you have this too.

Welcome Ajusta and best wishes for getting tested and treatment.