This Is MS Multiple Sclerosis Knowledge & Support Community

Hi there,

My name is John and my wife has had "MS" since 2001. Looking for answers as she has steadily got worse has been hard. We tried betaseron to no effect (actually seemed to make the desease more progressive in nature), Steriods (did nothing), LDN no great impact. I started to come to the conclusion that maybe this was not MS so started looking at mis-diagnosis. This led me to Hughes syndrome (tested -ve) and Lyme.

Lyme seemed to fit the symptoms so we went to an LLMD in the UK and got tested. The results were: positive LTT Elispot, +ve CD57 (though not that low at 80), -ve Western Blot from Igenex but had band 41++ and several key bands rated IND which is a weak =ve)

DR diagnosed Lyme and we are treating with Cefuroxine at 100mg/day but I have now started looking into CPn as well and have some questions:

Bearing in mind the MS diagnosis, do you think it is likely that Avril has Lyme and CPn?

Will the CPn treatment treat Lyme effectively as well?

Will her Lyme treatment treat Cpn effectively if present?

WOuld it be worth trying to speak with/see Dr DW in the UK?

Thanks so much in advance for your help, I feel I am so close to an answer to all this but not quite there yet!

Yes, write to David if your wife has a positive MS diagnosis. I'm his wife and he got me better. You will find an address on this page: http://www.davidwheldon.co.uk/contact.html

and another one here:
http://www.davidwheldon.co.uk/ms-treatment1.html

They both come to the same place.

Sarah

Me again:

Yes, the Cpn treatment is also effective for lyme, but the treatment she is on at present is not enough for Cpn.

Sarah

Hello, Our story sounds very similiar. Was Diagnosed with MS in 2004 and also tested positive for Lyme. I thought Lyme was my biggest peoblem. It took alot of time and travel to get a Dr here to treat my Lyme in my state of oregon we don't have Lyme. I did get better after IV treatment went on to have a baby stopped my low dose antibiotics a few months after she was born. And it all came back.

Just got back from seeing LLMD and he noticed 2 years ago i tested positive for CPN and mt LLMD at the time did nothing. So I am just about to start the Vanderbelt protocol for CPN and we may do IVs for Lyme. I have to wait another week for a phone appt. and all my Labs to be sure of treatment.

I know antibiotics helped me in the past and I know they will again. I am just so mad that I didn't know about the CPN and stayed in Mino or Doxy and maybe I wouldn't be so sick again.

2 years ago after IV meds my MRI was pretty much clear all lesions gone. Last month I have a prob 9 new lesions and am feeling really bad. we have a 1 year old that I can't take care of by myself because I might drop her.

Let us know how your wife is doing.