Kickas.org Forums Treatments, Drugs and Alternatives AS Pharmacy LDN Started last night!

Ok- Day 2, again sleep was easy and very good. Not a huge improvement in pain levels but much better energy and a nice clear head and moods.

This is kind of what I have seen after almost 1.5 years on LDN. I am better, but my blood work and inflammation markers never really improved, I slept better, my stomach settled down, and the fatigue lifted quite a bit.

Not a miracle drug for me but its effects really help alot.

New possible side effect- I am having hot flashes. Now keep in mind that I am in Arizona and it was 106 here today. I think I was having them some before the LDN but it is hard to say- they have been fairly frequent the last 2 days. Anyone have this??

I think the improved sleep has to be good for the pain in the long run. I don't know if I can deal with it better after a good sleep or if there is an actual decrease.

This may sound odd but I feel like the pain keeps me from over doing my physical activity- I try so hard to stay active but not to push too far. I don't if any one else is like this- it is such a balancing act for me to try and manage this AS. Making myself walk the dog during a flare just so I get moving is equally as difficult as reining in my super women "get it done attitude" when I feel better.

I will take an easing of some symptom with many thanks!

End of week 2: - 9th July 2009
LDN 3 mg compounded with avicel
Maintained 50% pain relief,
Mild dreams
woken 4am two nights, returned to sleep easily
Breathing Easier, deeper
Redness in lower legs (below knee to ankle) has greatly improved
sleeping in the afternoon
**Very Irritable and very tired (on the list of side affects which can last 7/10
days but depends on individual)

Move up to 4.5mg and will report back in two weeks.


I dont like the feelings of 'depression/irritability' I am having as this is
very out of character for me and hope it goes away soon.

Seems to be differences of opinion regarding taking LDN with steroids.
I was told under 10mcg Prednisone was OK, then another source says NO steroid.

JennyF

Grimm:

Glad and sorry to hear of the hot flashes. Good to know i am not alone. Could you elaborate a bit?

I posted this symptom on the ldn yahoo group last week.. was that you that replied? If not, then there are at least 3 of us.

Like you, i cannot tell if it is the LDN or real hot flashes ( i'm perimenopausal, age 52) or both. Always 2 hours after taking at bedtime, i wake up with a MAJOR hot flash. Sometimes there are more in the night, othertimes not. The only other time i had hot flashes was for the last two winters when i missed a few months of periods. BUT THEN they started in the afternoons and were every two hours on the dot all night long. This is different.

Wondering if this will ease up, or if i should go back to 3mg. What fun it will be when i go into my next round of missed periods and have hot flashes from both causes.

yippie

Jenny - I was speaking with Dr Lawrence about this side effect (IF side effect it is) and he made an intresting comment: "are those new to LDN use also making use of the diet and nutrient therapy? Might, for example, be using too much zinc with no apposing balance of copper, which will increase aggression and irritability. Taking copper in the absence of zinc, or even failing to take an inadequate dose of zinc, might increase feelings of depression.

Depression, often associated with auto-immune disease, may be offset by taking a balanced proportion of zinc, copper, B complex , and EPA (Omega 3) oils."

Thought I'd pass that on.

Can't say that I have noticed increased agression/irritability in myself. Keep us posted as to any improvement, and do check out the supplements and dietary factors - dietary, being no red meat! Lamb being particularly bad... (I like lamb - wonder IF this would include goat? Hmmmmm.) Also, cut down on starches. So an LSD diet and cut out red meat and adding in supplements looks to be the way forward.

Molly C (France)

anyone else using LDN who is NOT also using a modified diet and or supplements?

Personally, after trying [**BLEEP**] near every healing diet on the planet and spending a small fortune in supplements over 20+ years ago i missed things like strawberries in season, chocolate, pizza etc. and decided that i had ENOUGH losses for one person in a lifetime. Not one of the diets, which i stuck to religiously, ever made a difference anyhow. I think these diseases need bigger guns than " no nightshades" or "macrobiotics" or NSD or vegan/vegetarian etc etc. Or maybe i am just an ostrich with my head in the sand refusing to see The Truth.

Thanks so much for passing on that info.

I have very low zinc even after taking daily zinc replacement for over 10 months. Also low iron which came back as 6 (10-33) in recent bloods.........
would you believe I have been eating liver every day for the last two weeks to try and bring up my iron !!!!!!!!!!! Oh my......... that could be the cause.

I used to have low copper as well.........yikes..... its good to get an insight to answers.


now I will have to 're-arrange' all my bottles and potions.........lol

I have thankfully had a LSD for years, except I used to have wholemeal bread and rice until I found out about starch here. I always had problems after eating bread, so only used w/meal wraps occasionally

JennyF

Hi Swim
I totally understand your frustration, personally I have listened to my body and how it 'reacts' to food and found that some food it just doesn't like.

For example when I ate grandsons ice-cream birthday cake and half a glass of soda, within 20 mins I was in excrutiating pain.........so I dont eat ice-cream or drink soda, I honestly dont miss it.

Mind you, take away my 'cuppa tea' and we would have a fight going on (I am english)


JennyF
* I get Australian Brand Madura Tea which has no tanic acid but actually tastes like a real 'cuppa tea'.

Jenny - another nugget for you: "...extra doses of zinc (Zipvit: £6-99 for 360 x 25 mg) will also impede the absorption of both copper and iron. Solgar chelated iron and copper are best. All these supplements should be taken on separate occasions throughout the day (zinc in the morning).

Avoid liver, it contains too much vit A, which is detrimental in excess."

Solgar is a supplements firm/company. Their supplements are considered amongst the best going, very *pure (no, I have no shares in em, but do take their enzymes for stomach/gut.)

Glad to have been of help - but really it is Dr L. (He's terrific.)

Molly C (France)
Keeping on Keeping on (a'diggin an a'findin)