Feel sick started LDN

[amien]

Hi,

i was excited to find a doctor who prescribes LDN, hes integrative care, wants to also see what actually is going on, ordered some blood work (d, b12. folic acid etc) and also those stool cdsa tests by genova.

its day 4 since starting LDN at 4.5 and i have no appetite and just feel sick. usually i have a good appetite and want to eat even though i have D but these past few days ive been real nauseus. i also started to take a few tablespoons of organic virgin coconut oil, since i heard that Candida will not make LDN work.

what is going on lol? is it the get worse before getting better? and for how long does this last?

 

[mnsun]

Not sure. Usually doctors incrementally increase LDN, over a couple weeks, to 4.5. If you research doctors with some experience with these matters, most say the optimum dose is 3-4.5mg--depending on the individual.

Just what kind of symptoms or signs doctors look for to keep some sensitive individuals on the lower dosages (3-4mg), I don't know. That being said, most people do experience some slight changes (usually inability to fall asleep, vivid dreams, some a slight aggravation of crohn's symptoms) for ?maybe a week? on average.

Personally--and I'm not advising you or anyone else to do this from the get-go without giving the 4.5mg standard a fair chance--I'm changing my dose from 4.5mg nightly, which I've been doing for over 9months, down to 4.5mg every 36 hours or so. I took it once in the morning a couple days ago, and just last night I took it and experienced trouble sleeping. I find that odd since I essentially lowered my dose and experienced this wakefulness definitely as a result of the new LDN schedule.

Others probably have an opinion on the matter...

 

[KatyBuckeye]

It's hard to say, it could be so many things. I've spent a lot of time researching LDN, as I am about to start it. There are many different protocols for finding the optimal dosage and most involve slowly increasing from about 1mg up to 4.5mg, in 0.5mg increments. I know that the studies that have been conducted on LDN and Crohn's used 4.5mg. But I have interacted with a lot of people who can't handle the 4.5mg and will actually feel worse if the dosage is too high. You may want to consider decreasing the dosage and slowly working up to 4.5mg. Stay on a dose for a few weeks and then try increasing by 0.5mg. If you reach a dosage where you begin to feel worse, you know to go back down to the previous dosage. Good luck.

 

[xmdmom]

I'm sure everyone is different. My son started with 4.5 mg and didn't have any side effects --not even vivid dreams -- which made me wonder if it was working. In any case, he's been on it for about 4 weeks and he feels it's helping.

 

[Kev]

My guess is that you've nailed the correct answer yourself. The 'get worse before you get better' downside of LDN. I detailed my daily experiences, which had me feeling much worse before things turned around. 4 days in is just the starting point. Give it the full 90 days (typical of the trials) AND, if I might suggest... deviating from the dosages used in the trials is, in and of itself, an experiment within an experiment, and with no trial data to back it up. This latter, is just my opinion. I claim no training, no medical expertise, nothing along that line. But taking 1 4.5mg LDN pill at bedtime beat my disease into subsidence. And repeating that basic formula has kept it that way since November of 2007. If you were to suffer some heretofore never experienced side effects from that dosage, and you still wanted to try LDN; then adjust the dosage. But, if it ain't broke, don't f.... fix it. As for how long the worse before better lasts, my guess is that it depends on you... the extent of your disease... how bad it is.. how much of your GI tract is involved... how much disease your body has to fight off once your immune system starts to work for you INSTEAD of against you. See my point?

I've never heard of the organic virgin coconut oil treatment... Candida is said to lessen or impede the LDN process. Have you tested yourself for candida overgrowth. The test is relatively easy. I know people who have treated candida using just acidophilous (sp?).

Well, that's my 2 cents worth. Luckily, Canada is phasing out the penny in Feb of 2013

 

[D Bergy]

Try a ginger capsule with meals. It usually works good for nausea
I take it for its many other benefits.

Dan

 

[D Bergy]

After looking at your list of supplements, maybe you do not need another one

Dan

 

[amien]

Hi,

Thanks for all the responses!
i did start taking ginger supplements and since my stomach is so sensistive i only take the essential supplements atm.

i did call the compounding pharm and they said it was a lactose filler so they will send me one without lactose, and to use lactaid in the mean time.

and i met with my new gi today after so many other failed gi's. she does crohns research at a UC. she said the LDN study was flawed, and that to give it two months, and she said more than likely it wont work. and that i have to take humira.

ive always wanted to stay away from the biologics. and i also have oral thrush, probably from all the prednisone. i heard candida and ldn dont work ive been taking coconut oil. she also prescribed an anti fungal wash or something

 

[Moe.]

Amien
Did she explain how it was flawed?
Kev is living proof that it works.

Kev with ur remission are u able to eat anything? Or still sensitive? Do you still get any pain? Or evil D?

Thanks

 

[Kev]

Yeah, I'd be interested in hearing how it was flawed. I just had my latest scope today at 2. Everything is fine. To celebrate, I had real pizza for supper at 6. The lactose in the mozzarella might hit me; but that isn't due to Crohns. That is due to my lactose intolerance issues. Sometimes, when we have this one, major health issue, we tend to place all the blame on everything that bothers us with the disease (natural assumption). But, that isn't always the case. I was lactose intolerant pre-Crohns, and during Crohns, and now even after all sign of the disease is gone... I'm going to pay for eating pizza, but I'm not going to lose sleep over it.

 

[amien]

thanks for the advice. im not sure she didnt explain, she said they gave a wonderful presentation but how they chose their patients(testees) and other things were flawed. but than again i dont truly believe her. shes a research univ doctor so she probably gets alot of funding maybe from the big biologics.

ive been starting to feel better, i have an appetite, and i also started vsl #3 so hopefully im doing whatever i can to make it work so when i see her i can defy her "there's a real high chance it wont work""

 

[Tesscorm]

Hi Amien,

I was just wondering how you are doing with the LDN??

Will be taking my son to a new GI next week and am hoping he will consider prescribing LDN.

Hope you have continued to see some improvement!!

 

[amien]

Hi,

Yes I have seen improvement I know it takes time. I have candida (oral thrush) so doing nystatin and antifungals and cleaner diet. Also taking vsl #3. And since I've been taking care of the candida I've noticed a bigger difference.

My Gis wouldn't prescribe it so I found an integrative doctor (crystals list) that was more than happy too. Also make sure to email or take in the studies and everything attainable to ldn.

Also there's a wonderful group on Facebook "Ibd and ldn chat group" which is great!

 

[Kev]

Yeah, trhat is a good point about the candida. Glad you caught it in time. I don't know how it affects LDN, but it can slow or stop the healing process... I don't know if anyone knows... and getting a doctor to talk about candida is harder than getting them to talk about LDN.

 

[Guest9283]

I would like to add something important. Most doctors are making this 1 careless mistake when you bring up LDN. They see the one study, and deem it not valid, because it was not a controlled double blinded study. There for the study "is flawed" or whatever nonsense wording they use to explain their p.o.v. It takes 2 extra more min in their time searching to find the other latest study. Which concludes better than the first and is a controlled double blinded study by dr Jill.

So make sure if you are going to bring up LDN to your doctor, that you show them BOTH studies.

Tell your doctor her researching is flawed after you produce the 2012 study lol