My story, question on LDN and platelets

[Guest guest]

I have taken LDN for about 2 months now. I do not know what is wrong

with me, but whatever it is it is helped tremendously (at least pain

and energy wise!) One symptom that remains that worries me is muscle

twitching. I get small random muscle twitches in various parts of my

body throughout the day. I think LDN actually increases them, but I

have not charted it enough to say for sure. Do you think I should worry

about this? I had an EMG but it has been a long time. One Dr said it

was slightly abnormal and one Dr repeated and said it was normal, and

the first test was wrong.

Most of my symptoms seem like MS (numbness, tingling, pins and needles,

fatigue), but add to that bouts of high C reactive protein levels,

periodic bouts of joint pain, and times of strange looking purple

bruises to get a more complete picture. Also, as I fall asleep I get a

very weird vibrating sensation sometimes in my head and arms. Anyone

have anything like this?

It has been 2 years almost now and no-one has been able to figure me

out. Sometimes I think the best plan is to forget about it and

sometimes I worry that maybe I could be treating something that I don't

even know to treat. I may end up going to Mayo or someplace but this

has already been financially draining and I am not sure they will know

more than the many specialists I have tried here. I am due to have

another MRI to look again for MS but haven't done that yet. My

bloodwork has been negative for Lupus and Rheumatoid Arthritis.

Something happened to me for the first time a couple weeks ago that was

very worrisome. My platelets dropped to 13,000. They have never been

low before. I quit all presriptions and supplements, they went back up

to normal, and now I am back on LDN (thank God). Has anyone heard of

LDN affecting platelets? I am praying it had nothing to do with LDN

since my pain level is about 80% less than it was before. I am no

longer taking pain killers daily, which would have been UNTHINKABLE

before LDN.

Anyone have advice for me? Thank you.

[Guest guest]

2 months? yep, that's about right.

It's like something is INSIDE you, PUNCHING outward, right? Never, or rarely, in the same spot twice? Once I got used to them I thought they were pretty funny to watch and feel. I think it's your muscles waking up in various spots saying HELLO and doing whatever reparations may be needed.

I didn't write down when they stopped though.. I just noticed one day that it wasn't happening any more.

It's the strangest thing, isn't it? Apparently not everyone gets this, or maybe it's what has scared some people off LDN in the past, I don't know. But I think I know Exactly what you're describing.

I now see LDN as long term healing, and short term fixes. I had immediate results, and after 890 days I think it's still going on. 3 months with LDN I suddenly started to be able to curl my toes, but only my left foot.. not sure how much sooner I would have been actually able to do it, I discovered it by accident one day. I had long ago given up on ever having curling control over my feet. I still couldn't do a thing with my right foot toes......

Until November 2004, 1 year and 7 months on LDN, and one day they responded to my attempts and have been ever since. I keep checking. I think my right foot is now better than my left event.

The method and mechanism of LDN is something I think I'm going to be living on the rest of my life. The MS is just one thing it's been helping... it's orchestrating my immune system which is also helping the MS, as well as day to day attacks... allergy, pollution, dust, germs, etc. The reason why it helps so many things is because it's not a one trick pony, it gets to the root of the problem rather than trying to work on just one thing.

And it's a long process, battling day to day things, and working on old wounds.

http://www.larrygc.com/mystory is some of my journaling from the early days. I had more, but most of it was lost back in May due to the site being hacked and my posts never got restored.

Good luck. I hope it works out well for you. Don't worry ... the fear factor is the biggest issue. We scare ourselves with every little oddity.

[low dose naltrexone] My story, question on LDN and platelets

I have taken LDN for about 2 months now. I do not know what is wrong with me, but whatever it is it is helped tremendously (at least pain and energy wise!) One symptom that remains that worries me is muscle twitching. I get small random muscle twitches in various parts of my body throughout the day. I think LDN actually increases them, but I have not charted it enough to say for sure. Do you think I should worry about this? I had an EMG but it has been a long time. One Dr said it was slightly abnormal and one Dr repeated and said it was normal, and the first test was wrong.

[Guest guest]

you need alot of enzymes for the c-reactive protein. you need alpha lipoic for the neurological sensations. you should take calcium eap capsules for the little marks on your body you are describing. Dr. Neiper spoke of these and they usually go away after eap therapy. Injections would be the best choice, capsules next. Take alot of b vitamins for the twitching and the ala helps that as well. you could also benefit from fish oil and i would look for another conncetion besides ldn concerning the platelets. you need to continue on ldn and boost your immune system. just my thoughts. boswellia and turmeric are also very good anti-inflamatories,. kathy

[low dose naltrexone] My story, question on LDN and platelets

I have taken LDN for about 2 months now. I do not know what is wrong with me, but whatever it is it is helped tremendously (at least pain and energy wise!) One symptom that remains that worries me is muscle twitching. I get small random muscle twitches in various parts of my body throughout the day. I think LDN actually increases them, but I have not charted it enough to say for sure. Do you think I should worry about this? I had an EMG but it has been a long time. One Dr said it was slightly abnormal and one Dr repeated and said it was normal, and the first test was wrong. Most of my symptoms seem like MS (numbness, tingling, pins and needles, fatigue), but add to that bouts of high C reactive protein levels, periodic bouts of joint pain, and times of strange looking purple bruises to get a more complete picture. Also, as I fall asleep I get a very weird vibrating sensation sometimes in my head and arms. Anyone have anything like this? It has been 2 years almost now and no-one has been able to figure me out. Sometimes I think the best plan is to forget about it and sometimes I worry that maybe I could be treating something that I don't even know to treat. I may end up going to Mayo or someplace but this has already been financially draining and I am not sure they will know more than the many specialists I have tried here. I am due to have another MRI to look again for MS but haven't done that yet. My bloodwork has been negative for Lupus and Rheumatoid Arthritis. Something happened to me for the first time a couple weeks ago that was very worrisome. My platelets dropped to 13,000. They have never been low before. I quit all presriptions and supplements, they went back up to normal, and now I am back on LDN (thank God). Has anyone heard of LDN affecting platelets? I am praying it had nothing to do with LDN since my pain level is about 80% less than it was before. I am no longer taking pain killers daily, which would have been UNTHINKABLE before LDN. Anyone have advice for me? Thank you.

[Guest guest]

Thank you all for your insights!!

I am glad to know I am not the only one with the muscle twitching,

but I still wonder why my body does that. It is not painful though,

and I would put up with it forever gladly to avoid the immense pain I

was in. Now I wake up in the morning without feeling like I have been

run over by a semi truck, which is miraculous for me. I almost feel

like a normal person now most of the time. I do still have stuff

going on, it is just not the immensely painful stuff. For example, I

have times when my skin feels like it is burning. I still have the

vibrating, and twitching, so I hope that does not mean that if I have

MS, damage is still being done.

When people say it halts their MS flairs, does that mean they have NO

symptoms? Or is it just less severe? I still have the vibrating,

burning, and twitching, so I hope that does not mean that if I have

MS damage is still being done.

More questions...

What kind of enzymes do you recommend? Where do you buy them?

Whay is Calcium EAP helpful and is it hard to find?

Thanks again!

K