This Is MS Multiple Sclerosis Knowledge & Support Community

I have been on LDN for a few months now, probably around 6 months.

I am on the full 4.5mg/night dose.

I have never suffered from the side effects a lot of people talk about, and also, have not noticed the kick in energy levels either.

My filler is avicel, and its compounded by a reputable pharmacy (I got the name from someone else on this board).

In the begining, when my MS symptoms were worse, I noticed that my stiffness and spacicity were worse the day after I took a dose. I have also tried doses of 1.5 and 3mg, with similar results.

I have never had a vivid dream, or felt the burst of energy the next day.

I guess i am just hoping for anyones comments or similar experience.

Yes, I have not had a relapse since starting the LDN, but i am also on Statins and ABX's, so who knows what is giving the most benefit.

I'm kinda the same way. no vivid dreams, no restless night. I too am on a avicel filler. Not seeing the results I had before on a calcium carb filler.
But at least trying something, better that paying a fortune for that CRAB crap.

adjanimals wrote:Not seeing the results I had before on a calcium carb filler.

Wait a sec, are you saying you saw more or better results when you were knowingly on a calcium carb filler?

adjanimals wrote:But at least trying something

Yep, me too, with LDN, statins, abx's, diet, recently adding prokarin and in the past aimspro and rebif as well as supplements (curcumin, inosine and the others). Id like to think of myself as the poster child for "trying something"

adjanimals wrote:better than paying a fortune for that CRAB crap.

"luckily" in aus, the crabs are mostly paid by the govt (I think it cost around $28/month or something). But it left me worse off.

CureOrBust,

Out of curiousity, how long have you been on Prokarin and did you notice any change in your symptoms once you started on it?

My wife has been using Prokarin for 5 1/2 years now and is one of the fotunate ones who has had several of her symptoms reduced or eliminated.

Harry

HarryZ wrote:how long have you been on Prokarin

I thinks its been about 11days

HarryZ wrote: ...and did you notice any change in your symptoms once you started on it?

If I have noticed any, its been very minor.

HarryZ wrote:several of her symptoms reduced or eliminated

Was she "heat sensitive"? They say this indicates that the person will be responsive to prokarin. I dont think I am all that heat sensitive.

When I got my script, the pharmacy tried to talk me into waiting another week becaused they supposedly have changed their source of histamine (ie the people from prokarin), and it wasnt to arrive in aus for another few days. Were you told of this change? and do you know if your chemist is using the "new histamine"?

PS: I didnt wait, i'll get the new histamine in the next batch. If that has no measurable effect, i will stop using it.

CureOrBust,

Marg was very sensitive to heat and especially the humidity and suffered from terrible fatigue. Once she started on Prokarin, these problems were greatly reduced in a very short period of time. It also really helped her digestion, tingling in her feet and the burning sensation she experienced in her legs so often.

And yes, the general rule of thumb is that those who are sensitive to the heat normally get the most benefit from Prokarin.

Marg started on the new histamine diphosphate this past June. Originally, Prokarin users had to apply two patches a day but then in 2003, the company who develops Proakrin, discovered that histamine diphosphate had a shelf life of about 5 years and it started to lose its effectiveness. They went to a new histamine supplier (not very many of them around in the entire world) and used a different, more potent type. This resulted in Prokarin users only having to apply one patch for the entire day which was very convenient. Then in the past year, this histamine started to have the same problem and again, a newer, better histamine was provided. But now the users must use two patches again and Marg finds that a real drag.

Marg has SPMS and I feel that without Prokarin, she would be bedridden. Her SPMS has stabilized since starting on the Prokarin 5 1/2 years ago and even her neuro at the MS Clinic here prescribes it for her even though he isn't a real believer in the drug. But he has seen what is has done for her and fortunately he believes in what's best for the patient as opposed to what's best for the doc's beliefs!! Unfortunately, breaking her leg almost 5 years ago has done more damage to Marg's health than the previous 30 years of MS!!


You'll know after about a month or so if Prokarin will help you or not. About 1/3 of the users experience multiple symptom relief, 1/3 get one or two symptoms relieved and 1/3 get no benefit at all. But at least there are no bad side effects and the drug is applied with a patch and not injected.

Harry