Tuesday, 11 May 2010


On a forum I follow there was a thread talking about symptoms and management of certain symptoms, someone suggested that infact a google of MS and the symptom may give some understanding, a bit like the Rosetta Stone for Lyme Disease.

So many symptoms of Multiple Sclerosis are the same as Lyme Disease and patients with Lyme Disease are diagnosed with Multiple Sclerosis, but actually get better on long term antibiotics for Lyme when properly diagnosed.

Of course I did a try with Google and it was interesting except the second one referred me back to the possibility of Lyme which made me chuckle that at last we are becoming more aware of Lyme Disease, on the Internet at least.

I asked permission to post a further post in that thread because I think it so clearly shows the problems we have with our doctors investigating our illness.

The same can be said for so many illnesses but especially Fibromyalgia, ME/CFS, Arthritis and Neurological illnesses such as MS but also Parkinson's and ALS or Motor Neurons.

Actually, I think that's one of the problems. So many conditions include what we consider "Lyme symptoms" (e.g. crushing fatigue, sleep disturbance) I think docs find it overwhelming. Especially once they've ruled out the ones they're used to. Eg thyroid issues, anaemia, raging viral infection.

I've lost count of the number of times consultants have come to the conclusion that I must have HIV. (I don't. Tested twice, at their insistence.)

Funny isn't it... at one point they think it's likely that you have a life-threatening, treatable but currently incurable disease. Then when they find out you don't have it, they decide whatever it is can't be that serious, and just label it CFS. That's quite a leap.

The very first doc I saw thought I probably had a lymphoma. I've kind of gone backwards in how seriously ill they consider me, because if they can't diagnose it, they don't think you can be ill with *anything*.

As my symptoms got progressively worse, they decided I was getting better!

Doesn't this sum up our experiences so well in just a few words.

However my symptoms were not so much Neurological apart from a few Peripheral Neuropathies and the scary Swallowing problems Dysphagia, they were mainly Arthritis and Muscle weakness. Other patients find the infection affects different areas causing all sorts of symptoms including Psychiatric, ADHD, Autism, OCD as well as Alzheimers. For all these of course a different Rosetta Stone would be needed but better still perhaps we should just stick with Burrascano Guidelines found at www.ilads.og

Perhaps ILADS will be the Rosetta Stone for so many of our health problems.


  1. Lyme is also often misdiagnosed as myalgic encephalomyelitis, aka "chronic fatigue syndrome." Discovering a quick and accurate diagnostic test for ME will also benefit Lyme patients as they won't be miscategorized, and vice versa.

  2. Cinderkeys quite right and the sooner our Health Authorities start working for us instead of against us the sooner we will find adequate tests and adequate treatment for the millions World Wide who suffer.