I wasn’t going to reply again because I’m worried that it must feel like we are ganging up on you a bit, but I’m really concerned that you are being conned 
If this MD is a UK-registered neurologist and her diagnoses are therefore recognised accordingly, then I guess everything’s fine, but I must ask: why is she sure that you have MS when Lymes can also cause lesions and can also cause ON?
Karen x
I have been looking for an answer to my medical problems for a much longer time. I am happy for you, that you have a diagnosis.
Like others I’m baffled the way you were diagnosed but if you are sure that you are seeing a proper registered neurologist and not some cowboy then all is good.
I see you are also upset with the NHS, I to at times feel that I have been let down, but overall the care I have received on the NHS vs the paid appointments I had put the paid for appointments to shame.
I can go on a rant here about the private appointments but it would be ridiculous, we are just concerned and hope you are in good hands and everything goes smoothly for you now.
Whatever unifying diagnosis I receive for my symptoms I will definitely be questioning how they reached that diagnosis just to make sure I don’t end up receiving the wrong treatment which could potentially be life threatning for me.
Anyway would like to wish you good luck and all the best.
Maria,
I have been doing some reading on LLMDs or Lyme Literate MDs, as you said this is the type of specialist you are seeing. This has only increased my concerns.
This quote is directly from a major referral site in the USA for LLMDs
"Due to political controversy and legal challenges facing Lyme doctors, most of them prefer to keep a low profile. For this reason, they can be difficult to find. Additionally, good etiquette in the Lyme disease community dictates that when discussing doctors in public (including public internet discussion groups), their names should be kept private. "
And this one although long and detailed is well worth reading as it explains how the Lyme Disease Movement has gained momentum but is not based on credible evidence based science. It was published in the Lancet 2011
http://www.healthunit.org/hazards/documents/Advocacy_of_Lyme_Disease.pdf
Maria, I am in no way trying to “gang” up on you and I do understand how out frustration with getting no answers from the recognized health professionals we can gratefully listen to an “expert” who claims to have the answers. But in this case the expert is a talking a lot of bunkum and it is potentially dangerous bunkum… Please don’t risk yur health and your finances by following this pseudo science.
While I was wallowing in Limboland my neuro very wisely said to me when I shouted at him in frustration one day that, “If it is MS, it will show itself in time. We just have to wait and see.” Sadly, he was right… and I was diagnosed about a year later.
All the very best,
Belinda
Maria, I’ve known you for a long while and I know what you’ve gone through. I know the various countries you’ve lived in and some of your symptoms shout out Lymes.
You could have Lymes and MS but I’m worried about all of the other things they seem to have picked up.
Before they even start treating you with anti virals or detox I would have thought they should start treating your B12 defficiency and anaemia. This will help with some of your symptoms and could make you feel a lot better.
Maria, I know you’re desperate for answers. I know you feel the NHS has let you down and I can relate to that. Private clinics have to make a profit and this concerns me.
In my thoughts
Jacqui xx
My Goodness, Belinda. This would certainly set alarm bells ringing for me, big time.
Alison
As to the links above I am not in the states though am I?
Anyway I have asked the mods to remove this post, it is causing me so much anxiety.
I just thought i would share my news but it seems I am having to constantly explain myself.
I know you are just watching my back but I have not gone into this lightly. The Lymes test I have had done are the state of the ark the best there is and the newest there is.
There are things about my presentation that does not add up to Lymes but does to MS. I say again my neuro was always worried about me having MS, but was confused as to other symptoms I was having which did not add up to MS. I was offered the I.V. steroids in 2007 when my MS was still in the relapsing stage.
The co infection of Lymes which I have conclusively does not cause neurological symptoms.
I am addressing the B12 I have to see my gp next week and she is going to run more tests as well, I never said I wasnt having my B12 addressed.
I am not good at explaining myself, but I know what is happening.
Either way if you decide I cant possibly have MS I do have a co infection of Lymes definately called Ehrlichia chaffeensis. Either from the states or brazil. EC does not cause my neurolgoical problems.
The lymes test is not showing active at the moment becuase of other things going on. Even reuhmatoid postive factors can throw the tests results and yes I have those too (my blood test from NHS confirmed that one), as like i said so can viruses like EBV and CMV even though they are not current.
So the jury is out on full Lymes.
So anyway I am out of limbo land as I do have proven Lymes co infection.
I think this post will be removed soon anyway, but i just wanted to thank you for looking after my back, but in doing so it has just caused me more anx. Maria
Maria, I’ve sent you a pm,love,xxjo