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Joined: Feb 2009
Posts: 69
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hi friends,
i went on a pilgrimage last week and came back only today. i couldn't take ldn along so i missed it for 5 days. i would again start it from today.
meanwhile during my journey i walked almost 15 kms uphill and then 15 kms downhill in less than 24 hrs that's 30 kms by foot , though i took cox-2 inhibitor every alternate day.
i prayed for my health and wish that next time i go there i would be pain free
another point is that i drank chilled water when i was sweating and just when i thought that ldn has made my immune syste strong enough ,i am in grips of cough nd cold again.

no more info for now.bye.

Joined: Jun 2009
Posts: 180
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Hi all-

Ok - news about the hot flashes. Saturday night I had a few beers and was worried to take the LDN so I skipped that dose. No hot flashes yesterday until after my dose last night. Back to hot flashes today and they do not seem to be spaced by any regular interval. My mood has been very good- no agression, irritability, etc. Not giddy either just peaceful I guess.

My pain, especially in my SI joints is sharper. The bone weary over all ache and intense fatigue is greatly reduced. I would say that my quality of life seems better even with the sharp pains. It is all very weird and I assume this is all part of working up to full dose.

Thanks for the supplement heads up- I am going to leave off my cal/mag/zinc for a few days and see if that helps. I started that the same day as the LDN so that may be the hot flash culprit.

It really is great to have Kickas to bounce these things off of.

Any LDNers taking sulfasalazine too?


Joined: Dec 2008
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Decorated_AS_Kicker
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Hi,
I am very happy to note that you could complete your pilgrimage successfully. I am really surprised to note that you could walk 30 km in a day that too hilly area. Unthinkable. To quote my case, I got into a very severe problem after walking a little more than 20 km, before which I never knew about AS.
By the way where you had been, Kedarnath?

Regards.
Jay

Joined: Mar 2007
Posts: 1,461
Silver_AS_Kicker
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Day 20 @ 4.5 mg

• Still have the insomnia although it's abated a bit since day one
• Still good on my feet (from a pain perspective)
• Still have favorable energy levels
• Reverting back to some problems with cognitive issues (thought clarity, word recall, etc.)
• Reverting back to some problems with some muscle twitching and occasional left hand tremor
• Very tired lately (like I just ran a marathon tired), but I'm wondering if this isn't a result of me discontinuing my prescription antifungal, antibiotic, and aggressively increasing my use of bee propolis

Will report at day 40


Kind Regards,
Jay

Almost all of us long for peace and freedom; but very few of us have much enthusiasm for the thoughts, feelings, and actions that make for peace and freedom. - Aldous Huxley

Was the government to prescribe to us our medicine and diet, our bodies would be in such keeping as our souls are now. - Thomas Jefferson
Joined: Apr 2009
Posts: 1,576
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I'm starting my 3rd bottle of LDN (so I've been on it 2 full months now)and here are the benefits I have noticed.

-better sleep
-less stomach issues
-nsaids work better while on ldn
-less fatigue
-slightly less pain

On the down side, I am still in a LOT of pain and so it does me good to hear Trudi say she is sticking to it for 6 mos. Thanks Trudi. You give me strength.

I am taking Celebrex every day, it hurts my stomach and so I take a prevacid or zantac with it. I feel like I need Celebrex 2x per day. I am also taking a muscle relaxer at night to settle the cramps down. Kudos to all of you who are keeping your "chins up" while bearing the burden of this cruel disease. I know there will be a blue ribbon (or something else really really good) waiting for us in Heaven.

-Donette

Joined: Feb 2009
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i went to vaishno devi shrine in jammu nd kashmir. thereafter went to another place called shiv khori 84 kms from katra. both were wonderful. in shiv khori there is a 200 mtr long cave very narrow and we have to go through that. outside was very very hot but inside the cave it was cool. worth visiting.

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Hi,
Thank you.
Regards.

Jay

Joined: Jun 2009
Posts: 89
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End of weeks 3 & 4 - 23rd July 2009
Moved up to Doctors maximum dose LDN of 4.5mg
Extreme tiredness – daily afternoon deep sleep from 2pm – 6pm as well as full night sleep
and 'useless' and unable to function any time awake.
No vivid dreams.

Reduced dose to 3mg – tiredness remained
Stopped LDN for one day – pain returned – redness between ankle and knee returned.

Changed to day time dosing at 1.5mg – tiredness improved
pain relief now 60%
Redness between knee and ankle greatly reduced after recommencing LDN.
All other benefits (lungs) remain
Irritability has eased, family have come out of hiding places
I will now stay at 1.5mg daytime dose.

JennyF

Last edited by freeman; 07/23/09 12:28 AM.

RAI 131 - 3Gr Armour DHEA HRT Fish Oils Vit D3, Vit C, MSM, Probiotics LSD - starting LDN July 09 Cerebral Aneurysm - coiled
Joined: Oct 2008
Posts: 843
Ninja_AS_Kicker
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Hi All,
I started ldn on May 30 at 2mg and went to 4 mg on June 8th. The pain is way down, to like a 2. I'm trying to decide why my prescriber wants me to go up to 6mg. I think he read about ldn somewhere and decided to offer it, but I'm not sure he keeps up on it. has anyone else been told to go higher than the"optimum" 4.5?

hi Jenny, so you have started taking your dose in the daytime? Molly will tell you why Dr lawrence is so against this.... but I'm glad you feel better... I am oddly surprised (like from the outside looking in) to be in a pretty deep depression. Could be all kind of other things, comes and goes, but this one is impressive. So I was interested to read your feedback.

hi swim2lakes; I don't follow a special diet. And other than well balanced, I'm done with all that, too.

hi grimm: I am on ssz, 2g a day.

I've been following y'all, thanks for sharing,
cc

Joined: Mar 2008
Posts: 3,233
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Hey CC:

Sorry to hear that you have been in a funk lately- if there is anything we can do to make you feel better, or just give you a laugh...


Dow
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