Tuesday, November 24, 2009

First day of LDN for MS, 2 months since my last Tysabri

I took a small dose of LDN last night. I slept ok but not great. Woke up a few times. I felt great when I woke up at 6 am. Better than I have in a while. No anxiety - I usually wake up with craploads of anxiety. Around 11 or so, I felt a bit of a crash, and then again around 3:00. More so than what usually happens to me in the afternoon.

I read Julie S.'s blog before I started, thanks to CC. That's helped me with my expectations. I don't know if I have any. I didn't with Tysabri. I hope that I can find some stability on it, and have more good days than bad. Given how much I've improved with the MS-Diet, I think it's a reasonable hope.

I saw Andrea Cohen yesterday - she's my holistic neurologist. Is it ok for me to say that I love her? I love her. She listens to me and hears me in a way that my more mainstreams neuro's don't seem to be able to. I was laughed out of town by them for even mentioned LDN - twice. Andrea wrote me a prescription. We went over all the supplements I'm taking, adding one and increasing a few others.

We also talked about the diet and she encouraged me to try going back on legumes with the appropriate enzymes on hand (well actually stomach), and, while continuing to avoid casein and gluten, trying non-cow cheeses, such as buffalo and goat. I'm all over the legume idea. I would be very, very happy to include them back into my diet. I was a vegetarian for years and years until I went on the MS-Diet. I had to start eating turkey, salmon and occasional chicken so I could get enough protein.

I will think about the non-cow cheese thing.

Andrea is so nurturing - I left feeling like everything was going to be ok somehow. I had a lot of inspirations about what my "Plan B" (post-Tysabri) will include.

I think I might have also switched my neurologists. around. Andrea used to be my "other" neuro. I think she might have become my main man. I need to keep a good relationship with the other guys, to get MRI's and bloodwork and all that. But my day-to-day life has improved so much since I've worked with Andrea, so I think my Plan B is going to revolve around her approach. I think I'm going to skip the steroids and the Rituxan, for now.

I drove a (also gluten-free) friend down to Colorado Springs today and we stopped by "Outside the Breadbox", a gluten-free bakery. WOW, that was fun. My local health food store stocks some of their stuff, but they have a whole bunch more that I had not seen. We were both like kids in a candy store. Plus we hit them on a sale day! It was a beautiful day in Colorado, today. And I've got GF, DF pizza crust waiting for dinner :-)

11 comments:

sherri said...

Good to read about your experience so far on LDN. I also went through the fatigue late in the morning and mid afternoon. It improved over time. I think taking sublingual B12 helped a lot, too.

Have you experienced any headaches yet? I did the first week, but they're gone now. It may have been because I started at 3mg instead of starting at a lower dose, though. I did eventually increase my dose to 4.5mg. I'm very happy with my results!

I really enjoy reading your blog. Keep up the great work informing others about your experiences with Tysabri and LDN.

trrish said...

Hi Sherri,

I was hoping to hear from you again. Thank you so much for your comments about LDN a few weeks ago - you are what nudged me to make my appointment with Dr. Cohen.

Whether LDN is the ticket for me or not, I really appreciate that you reached out.

I had a very mild headache today, but it didn't stay long. I'm going to ramp up to 3 mg over two weeks. I've told myself to expect various things over the next couple of weeks and not to make any judgements until I've been up to 3 mg for a few weeks.

t

sherri said...

I'm so happy for you! I guess they say pay it forward, huh? lol Please let me know if you have any questions. My personal e-mail address is sherriwhitern@gmail.com (and I welcome others, too).

sherri said...

Trrish,

I should have mentioned this earlier, but there are many LDN groups on Facebook, as well as Yahoo. I belong to all of them. They have provided me with great support during my journey on the medication. The Yahoo site is: http://health.groups.yahoo.com/group/lowdosenaltrexone/ The members of the group are from around the world and range from patients to doctors.

Courtney said...

Here's to a fresh start!! We are all on a constant journey to find what is best for our bodies and our lives. Good luck and keep us posted!

PS.. There is a great almond cheese on the market that melts well and tastes great.

Jennifer C. said...

Hi! I just found your website - I am on Tysabri #18 - thinking about taking a holiday. I noticed that you mentioned Gluten free - I was diagnosed with Celiac disease - which come to find out I have had minor symptoms of all my life. The Tysabri was thought to have severely flared it up... (lost 30lbs in 17 days) Did this happen to you?

trrish said...

Hi Jennifer,

I went gluten-free (and dairy-free and legume-free, low sat fat, low sugar...FUN free :-) because of what I'd finally read about the 'MS Recovery Diet'. There's a website here: http://www.ms-diet.org/, and also here: http://www.msrecoverydiet.com/.

The theory is that people w/MS are sensitive to the protein molecules in gluten, dairy, etc. That those protein molecules mimic the molecules of myelin, and the immune system flares up and attacks when you eat them. They get into your bloodstream via leaky gut syndrome.

There is a very nice explanation in the book "The MS Recovery Diet" by Ann Sawyer & Judi Bachrach. As with all MS treatments we use, it's not a cure, but it did significantly improve my quality of life, in terms of energy cognition and relapses.

It's interesting that Tysabri would cause your Celiac to flare-up. I've read that most MS'ers test as either celiac or gluten-sensitive.

There's so much we still don't know about this disease!

I decided to use LDN, coupled with the diet and also the inclined bed thing - have you heard that one yet? Here's a link: http://andrewkennethfletcher.blogspot.com/

I've been following the reports about CCVI. I'm skeptical, but interested.
http://www.thisisms.com/forum-40.html

Trish

Jennifer C. said...

Thanks - This is very interesting...I will check these websites out out!

Leslie said...

I have been on LDN for almost 2 months and have had great success. I started at 1.5mg for two weeks, then 3mg for two weeks and now I am at 4.5mg.
I just saw my traditional neurologist and he was very upset that I had stopped copaxone and told me I would have another exacerbation if I only do LDN. From all the information I have read on LDN, I am as well off as anyone on the FDA approved drugs.

I do have an appointment this month with Andrea Cohen. From this blog I am assuming that you are in the Denver area. Dr Cohen cannot go in Boulder hospitals and practice...so she will be my sounding board. But I still need a neurologist in the Boulder area. Does anyone have a neurologist who would be friendly to LDN and practices in the Boulder area?
Leslie

sherri said...

Leslie,

I just wanted to drop you a quick note and let you know I'm so happy about your results so far on LDN. I've been on it for seven months and I feel better than I have in years. I wish you the best and I hope you're able to find a neurologist in your area who is LDN-friendly.

I'm not sure if you're on Facebook or belong to any Yahoo groups, but these two have huge group followings for LDN. There is a woman on both boards who has a list of GPs and neurologists who prescribe LDN around the world. She may be able to offer you some information. Although you don't need someone to prescribe it, at least these docs would be LDN-friendly. I'm probably grasping at straws here, but it may be a possible suggestion.

Take care!

Sherri



Sherri

trrish said...

Hi Leslie,

You know, over the years I have seen a neurologist in Longmont, one in Boulder (Marilyn Newsom, who just retired) and then saw either John Corboy at the CU hospital or Alan Bowling at Swedish ever since. I was not doing very well for the first 8 years and wanted someone on the cutting edge, which I thought Corboy was.

I then found Dr. Cohen.

I don't know of a Boulder neurologist who is LDN-friendly. I live right outside of Boulder, in Lafayette, but I dropped out of the Boulder medical scene about 5 years ago and use University Hospital for eveything now.

My plan is continue with Dr. Cohen for now. If LDN doesn't keep me going, I'll go back to CU. I have to keep up a relationship with them to some degree. Right now, I'm so pissed at them - after they recommended I go off of Tysabri, they never called me to schedule anything at all - MRI, steroid pulse, Rituxan, etc. So I went on my merry way with the LDN and didn't feel too bad about not talking to them. I haven't even told them about being on LDN yet. And I kind of want them to know, because If I continue to do well, maybe it will help them get over their anti-LDN stance.

I'm still on 1.5 mg on LDN. It's been 3 weeks, and mostly pretty good. I'm still struggling with the insomnia. Today I bought some mega-strength melatonin to see if that will help me for a while. I'd like to bump up to 3 mg after the first month. I'm a little worried the insomnia is going to get even worse.

The plus side is, I have had, for the most part, a very consistent slow-burn kind of energy that I haven't had for years and years. I'm pretty happy about that. The nights I don't sleep well mess me up. But the nights I do sleep, I am in very good shape the next day. I feel better on those days than I have felt since I can remember - way back before my diagnosis. I hope that it continues.

Tell Dr. Cohen you 'met ' me :-) I wish you the best with your treatment. Keep in touch,

Trish