UK Times and Independent on ME misdiagnosed as Lyme disease, August 2023

Exactly this. My dear friend who passed away from M.E complications followed the same protocol. He had a PICC line for 9 months and shoved abxs down his throat for years and slowly deteriorated. The course of abxs destroyed his gut.

 

I would suggest the way forward and out from this is the development of readily available diagnostics that will unequivocally confirm or disprove active infection.

Anything less has time and time again proven to destroy lives - irrespective of how one perceives Lyme.

 

I’m so sorry this happened to you. That you now have such devastating consequences to deal with.

I am sure that you weren’t able to give informed consent. Not in face of someone professional emphasising the danger of not following through with their protocol. I imagine very little information was available on exactly what the dangers were. Even had you been an adult at the time and well enough to do a little research.

It does seem a really huge problem over your way. I’m in the UK and as far as I can vaguely recall (don’t quote that though, it really has been a long while since I read up on this, for obvious reasons I do not have the best memory…) people here mostly had to go to over to Germany for this type of intervention. Except in very rare cases where specialist Doctors here were convinced that this was necessary. I think the rules here are pretty tight, to protect the NHS.

 

I went through a similar struggle with misdiagnosis, and it was frustrating not knowing what was really going on. Getting tested properly made a big difference for me. If anyone is unsure whether they might have Lyme disease instead of ME, a test could help bring clarity. I found https://www.diagnostore.com/lyme-disease-test useful for checking. It’s worth ruling Lyme in or out when symptoms overlap so much.