Great Erika!! Keep in mind, that you will have days when you think the LDN is not working, but it is, don't give up. I've had bad days but I always seem to recover faster.

Like when I was in the hosp after that fall that sent me into an exacerbation from hell. The PT Nurses were amazed that I was outta there in 10 days & not the 3 wks they had planned for me. The younger lady next to me was there for 3 weeks and she was walking.

EDITED TO ADD. I think some of our LDN members have given up on it?? Not as many posting here anymore. I hope they're OK..

Mariel,

Maybe someone here (SallyC ?), can PM you with the contact information for Skipps Pharmacy. From what I've read on this thread, he is someone you may actually be able to talk to that is very knowledgeable about LDN; and he may be able to find out for you if LDN is contra-indicated in your situation or not.
You have nothing to loose but the price of a phone call.

Pharmacists often know more about this stuff than doctors or specialists because they have the educational background, all the cool reference books and the e-links to pharmacy related info sites (from research facilities to the drug companies themselves).
It is the business of doctors to know diseases, treatments and management, but it is the business of pharmacists to know about drugs, interactions, contra-indications etc.

I hope that it turns out that you can try LDN and that it will help to at least take the edge off of your symptoms.
Good luck and please keep us posted on how you make out.

With love, Erika

It has now been one month that I have been taking LDN and some of the changes that were listed in my previous post at the two week mark have evened out.

Overall there the most significant improvement has been in cognition, vision and mood.
When I think back to the problems I was having with cognition, it is truly amazing the change that has occurred for now, all aspects of memory and cognitive function is much improved and remains fairly constant; where just two weeks ago it was still fading when fatigue set in.

Vision is better and more often I can use things like the computer without having to enlarge font or take breaks because of blurred vision. I can also read things like newsprint and books, where that was very difficult before without magnification.

With respect to mood, I think a lot of the improvement is because there is less stress and frustration present due to the extra energy that was required to accommodate problems with cognition, vision, coordination, spasticity, pain etc. Thus with the more severe aspects of those symptoms reduced, there is more energy, less fatigue and a great deal less frustration.

So have these improvements been due to the LDN or a remission? I had to find this out for myself, for along with wanting to satisfy my academic curiosity, I also wanted to differentiate between a remission and the effect of LDN. If I could get that information, there was the potential of discontinuing with the LDN if the improvements were due to a remission even if the LDN had fostered it.
Yes, I know that it is not recommended to discontinue LDN from what I have read on this thread, but it is still a drug and I would prefer to not be taking anything if at all possible.
So 3 days ago I stopped the LDN...and resumed taking it yesterday.

In short, I am now of the opinion that the improvements are due to both the LDN and a potential remission; but within the first 24 hours of the first missed dose, I was already having cognitive issues (memory mostly), general incoordination and muscular weakness, visual blurriness and whole body fatigue.

Along with that, an ankle that had become swollen and sore (apparently due to an infection and sprain) three weeks ago, flared up immediately within that 24 hours.
It had begun to improve over the last week, but I am now packing it in ice several times a day and through the night, as well as using a topical anti-inflammatory in an attempt to bring the heat, swelling and pain under control once again.
If these measures don't work more than they have since starting them 2 days ago, I will likely be looking at another round of antibiotics and/or some other form of treatment; as it is difficult and very painful to walk with it.

With love, Erika

IDIOT!!! I cudda told ye that would happen.
No matter what the non-believers say, that Placibo is strong medicine..

ROTFLOL

Thanks Sally!

Sally please give me the number for Skipp's Pharmacy. Erika suggests I give them a call to discuss what effect LDN might have on Porphyria.
I can probably find it by googling (later, after an appt.) thanks to you and thanks to those who have posted on LDN.

http://www.skipspharmacy.com/wplog/

Address & Phone

21000 Boca Rio Rd
Suite A-29
Boca Raton, Florida
33433
561-218-0111
800-553-7429
Fax: 561-218-8873

It seems that the body is undergoing another flare up. First came increased problems with swelling and pain in the ankle, then the eyes went wonky and as of yesterday morning I have the hug as a bed fellow. It kept me up most of the night last night but has finally eased off a bit now.
Ah well...I can stand to loose a couple of pounds, although I don't wish this sort of a weight loss program on anyone.

Before the hug arrived, I was sleeping the best that I have for years (4-5 hours straight) and that change came when I increased the LDN to 4.5 mg. I did try to go back down to 3mg but the ankle, eye and sleep symptoms seemed to get worse; so I am back on 4.5mg and feel better for it.
I don't think that the higher dose is increasing spasticity as some found that it has when they increased it. The hug typically does come on for me if other symptoms are increasing; so I can't really say that its return has much to do with the higher dose of LDN.

Interesting thing is that although these symptoms are present, the severity is considerably less than what has been experienced previously during flares. I am still mobile although I use a walking stick for extra support for the ankle in the mornings when it is at its worst and also if I will be walking any distances.
I attribute the milder severity of symptoms to taking LDN and do blame myself for getting into another flare by coming off of it a while back (just to see if there would be a noticeable change). That two day hiatus of not taking LDN brought on the ankle symptoms again and that seemed to have gotten the 'flare ball' rolling.
Live and learn.

Also of note, my mood is good (humour is intact) and although the body is tired from loss of sleep, coping with symptoms and more recently the hug, cog-fog is not much of an issue .
As I have said before, this is huge for me; as I found that symptom was the most difficult to cope with. Loss of coordination and/or dizziness are not very much of an issue either so far.

All in all I feel quite able to ride this flare out without the need for much intervention; although I have scheduled some massage therapy for the spasms in the back and for the ankle/leg. I am also doing electromagnetic biofeedback therapy (similar to the therapy that Dejibo is doing), to help get the body back into more optimum balance.

The eyes have been giving longer periods of clarity (a couple of hours at a time earlier in the day), but there is still a fair amount of pain so I am doing my best not to strain them too much.

With love, Erika

How's it going with the flare and LDN. I found that if I religiously took my LDN while in a flare, the flare was shortened and I did'n seem to have any lasting bad effects from the flare.

I missed/forgot a day of my LDN and Prozac last week and boy did I know it. Was nothing but a marshmallow that day. Note to self - Don't do that again.

I hope your flare has eased up on you and you're feeling better, Erika....and that goes for the rest of you too..

I stopped LDN when I had surgery a year ago. I think I'm going to start it again. Haven't had any real big problems without it but I just seemed to feel better when I was on it.

Sally, do you still talk to Dr. S?