Undiagnosed Newbie - PEM?

Hi guys,

I'm an undiagnosed newbie from the UK, and have some questions for all you Lyme experts if thats okay! But first, my back story...

I'm 22, male, living in England. I've been ill for almost 2 years now with what my doctor tells me is Chronic Fatigue. Summer 2011, i was training hard for the new rugby season. I was on holiday in Portugal, when one day i started feeling tired whilst exercising. This tiredness continued until i was full blown ill a month later, and the rest is history! I haven't had any tests done yet for Lyme (although i'm really regretting not doing any right at the beginning), but will hopefully get some sorted for very soon. It's only been a few weeks since i've really started researching Lyme in all it's glory, and i think i may have it. I've had no rashes, can't remember a tick bite, but i got bitten by lot of mosquitoes at the start of the week in Portugal, so i've always wondered if they gave me Lyme's.

My symptoms:
Main ones - extreme fatigue (pretty much housebound, can't walk for longer than a few mins without getting ill), very poor sleep, bad anxiety, ringing ears, brain fog, hot flushes, heat sensitivity.
Others - blurred vision, sweating, sore glands, sore neck (rare), hot feet, headaches (rare), slight knee pain (apart from the knee i don't have any aching joints).


I'm struggling with it all at the moment. My health is getting worse and i've stopped having my friends over because it makes me too ill. Got amazing support from my family though, so it could be worse i guess!

The big question i have is regarding Post Exertional Malaise. I suffer from it badly, can't do any type of exercise without being ill and groggy for days, sometimes weeks. Do Lyme sufferers get PEM?? I've read somewhere that Babesia can cause PEM, is this true??

Apologies if that was long! Any help would be much appreciated.

Mark

Mark

To answer your question, Post Exertion Malaise is very common. When I used to run I was training for half marathons. I would never be able to train like the rest of the team. I would manage to get my big miles done on a Sat (say 8 - 10 miles) and I was done for the next 4 days. Others on the team were out doing short runs the next day. I was on the couch. I also had a lot of muscle pain and it wasn't from exertion. For example in the first mile my calves were scream in burning pain. There was no stretching that would help them. They were regularly rock hard and the skin was almost shiny from being pulled so tight. I managed to always get through training and do my runs, but there were many times I was out on the course in tears trying to get past the pain.

I wish you the very best. We understand how difficult this is.

Sparky123 / Mark,

The post exercise fatigue is the trademark of the CFS/ME sufferers.

Quite a lot of them have gone on to be diagnosed with Lyme or other coinfections as their underlying problem and cause.

So in that respect, it is common for Lyme patients to have the post exercise fatigue. Many started off as being diagnosed and told they had CFS/ME. Then they found out about testing for Lyme, and voila, many came back positive.

Other than lyme testing, I can suggest testing for mycoplasma, chlamydia pneumoniae (don't worry, its not the std one), and saliva hormone testing which includes cortisol. That last one will help work out how your adrenal glands are going.

Other testing to get done (as a general healthy thing, any doctor should have no problems ordering), is to also get your Vitamin D levels checked, other blood panels, and any urine panels your doctor is happy to order as well. It's a good idea to have the whole picture.

All the best, keep us all updated.

Once you have had the lyme, mycoplasma, chlamydia pneumoniae, and other blood panels done, then if they come up positive, you will be diagnosed with that. Which will then mean you won't have ME diagnosed. The above can all be treated and immune system support given, to help keep them away and keep you healthy.

ME has an MRI done to confirm it, but, there has to be no other treatable cause. In your case, and anybody else's, if tests for those other things come back positive, then those are what you have.

Depending what comes back positive, it would therefore then be safe to say, your CFS was misdiagnosed, and caused by those other things all along. So your fatigue had/has a cause. This is the best news a CFS patient can receive.

Most CFS and ME patients suffer for yrs without being tested for other causes. You would prefer to be diagnosed with something else, which can then take away your CFS label, and also means ANSWERS!! woohoo.

Answers mean treatments and symptom relief over time.

So remember to have Lyme and coinfections done (Igenex), mycoplasma species, chlamydia pneumoniae, vit d bloodwork, other bloodwork like liver tests, urine, FBC, etc. Cortisol testing to see how your adrenals are doing (which is HIGHLY relevant for CFS patients, and also lyme even). A lot of CFS patients get EBV, CMV, and other herpes strains tested as well, as they come up as the cause for many of them.

There are doctors out there who will also say that metal toxicity testing, and bowel/gut testing needs to be done. I strongly agree with that, though get the important tests done first. Financially speaking.

Financially arranging tests to be done is the hard part, as well as waiting for results. Once they come back positive, it can be exciting to know what has been causing the months or years of CFS and other symptoms.