Jan 192015
 

The Neuro thinks I need to be on a medication and it should be an Interferon. It should be fairly well established what I think of the Interferon class as a whole. In the office we got off on a slight tangent when Eriksgirl stated that they do not even know how the Interferons work. His response was because you do not know does not mean I do not know. Normally I would agree but on what level is this drug working? Furthermore, I have to come back to my older post that they just do not work.

I guess I should be fair the Neuro is equally OK with Copaxone. Unfortunately I know very little about Copaxone, and I am not really interested in finding out any more. 🙁

Aubagio

The box for Aubagio looks like birth control piils. Maybe as a warning NEVER GET PREGNANT WHILE USING!

Interestingly the Neuro is categorically against all available oral medications. His reasons was not that they are not effective it was that none of them is safe, and this is from a doctor for there is a time and place for Tysabi. He does, and has, prescribe the medication with varied results. I cannot remember all the oral drug names so forgive me. One patient he was treating the oral drug was

causing stomach issues and I think sleep issues. He did not say the drug killed her, but it did not help. Then of course the death with Gilenya, and if I recall correctly that happened on dose #2 after the supervised dose went fine. I believe the drug Aubagio was of special note because it carries a pregnancy Class X for men too. He said he would never prescribe Aubagio to a male and never to a female before menopause.

Long before this visit Eriksgirl wanted us to go on a gluten free diet. She is sure I would feel better. I agreed that if I ate better I am sure I would feel better. Eating better should help regardless of what I am suffering from, MS and or Lyme. She then purchased The Wahls Protocol which at this point I have only flipped though (and it scared me :-). Good news is the Walhs diet is clinically proven to help with MS, but do not ask me how much because I have not read that part. Eriksgirl, who looked at the book more than I have, agreed we should not start there, that was like jumping way into the deep end of the pool (can I swim?) but we should start with the paleo diet instead. I agreed and we have a friend who has had to be on a paleo diet for a while now, former vegetarian, and it fixed her problem, related to carbs I think, and in the minimum she is a good resource. The thought is the paleo is a segway to Wahls. One baby step at a time. 🙂

A couple addendum here. I will try not to post images of what I am eating. I am not on Facebook, but I hear that is a thing. I also told Eriksgirl that if we are going to get a blender for this new diet it cannot be a Vitamix because the blenders have a cult following. I do not want to be in the Vitamix cult. I think a Blendtec, etc. would be more than adequate. I know a blender sounds weird but Eriksgirl has Vitamix friends, I will not join. 😉

Nov 162011
 

I received an email recently asking my present condition, and whether I had MS and Lyme. The concern from the author was she had been treating Lyme with some degree of success and is now getting worse. I shared an experience of someone I know which seemed relevant. This other person had also been treated for Lyme, but had not gotten significantly better. He eventually went to Dr. Shoemaker and he recommended they test the house for mold; and it was discovered they had a very toxic form that needed to be fixed. While taking care of the mold, moving, and taking new medicine helped he was still having significant problems. At a future appointment Dr. Shoemaker suggested he go on a gluten free diet for a few months. During that time there was massive improvement. He continues to remains gluten free because any gluten causes sickness, fatigue, etc.  As a reminder to everyone to be wary of doctors offering advice and no solutions because he has been told by other doctors after the improvement off of the gluten products that he is not gluten intolerant but offered no other good solutions.

My point to the author of the email was not about gluten or the mold but that you can have more than one problem. If you are not getting better or are getting worse than you need to evaluate your treatment and maybe the diagnosis. Many things can cause fatigue and just because you have been diagnosed with Lyme, MS, etc. doesn’t mean something else isn’t causing the fatigue, etc.; on the other hand it could just be Lyme or MS. Be diligent and fight to be well.