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Jenny and LDN therapy

Jenny (in Oz) has started the Low Dose Naltrexone (LDN) therapy and is keeping a diary, which she will add to on a weekly basis, or whenever she feels the need to report something special.
Started 1.5mg LDN after taking bloods for baseline.

End of week 1: 2 July 09
Taking for Ankylosing Spondylitis (type of arthritis)
Started 1.5mg at night compounded with Avicel
No dreams, woken at 4am 3 nights.
Mild easing of hip and thigh pain.
Mild easing of neck and shoulder pain.
It was a long week and I could hardly wait for 10pm to be able to take next dose. Definitely felt it was doing ‘something’

Increasing to 3 mg tonight. (3rd July)

Additional Info: I am on a low starch diet.

Now I was going to post update a week later, however, I ‘have’ to post the reaction after upping to 3mg last night, and cant wait a week and just have to report HUGE improvement in pain relief this morning. I would say that I now have 50% pain relief. Plus more energywoohoo and that was at 9am.

Thinking clearer and noticed also that breathing is easier as well. Lungs able to expand further.

So thrilled, feel I can stand straighter and stronger, if you know what I mean. Still very early days, but I am soooo encouraged.

Info on LDN in the files section. It is being recommended for autoimmune conditions (MS, Parkinsons, Crohns, Celiac, Rheumatoid Arthritis etc). I am so excited I could cryBlood test in 6 weeks for comparison.

I will do proper end of 2nd week report.
It has been suggested that people with autoimmune thyroid disease have reduced their meds by 50%. As I had RAI 131, that is not likely to happen to me. I am also advised to be prepared for initial bit of a roller coaster of up and down relief, but thats ok as I have been in pain for so many years and it will take time to stabilize.
End of week 2: 9th July 2009

LDN 3 mg compounded with Avicel
Maintained 50% pain relief,
Mild dreams

End of weeks 3 & 4 23rd July 2009

Moved up to Doctors maximum dose LDN of 4.5mg
Maintained 50% pain relief.
Extreme tiredness daily afternoon deep sleep from 2pm 6pm as well as full night sleep and ‘useless’ 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.
I will now stay at 1.5mg daytime dose.

End of weeks 5 & 6 6th August 2009

This has been a very interesting time with the increased inability to function due to fatigue with night time dosing.

Reduced dose to 1.5mg and day time dosing helped but I was caught between a rock and a hard place as I could visually see benefits but was really unbearably tired. Keep in mind that I was irritable and bad tempered in the first couple of weeks. I also experienced change in taste and my cuppa tea tasted like dishwater and food tasted ‘strange’.

I was asked to submit my experience to a LDN UK newsletter a copy of which was sent to Dr Lawrence, an expert in LDN, and here is the interesting stuff. Part of his comments were with relation to the tiredness: *AS refers to Alkalysing Spondalytis

“The story is consistent with an exaggerated zinc deficiency prompted by the LDN. While the LDN was attempting to stabilize the AS the inevitable zinc deficiency that would be expected to occur with AS would become more obvious as current reserves were used up in an attempt by the immune system to resolve the inflammation.”

So I am coming off the LDN until I can build up my levels of zinc to be able to withstand the demands on it from the LDN. My daily zinc to go from 46mg to 100mg also copper has to be increased as zinc, iron and copper have to be brought up at the same time, although taken at separate times.

I would also mention that a ganglion cyst on my wrist that I have had for at least 5 years reduced in size last week from the size of a grape to now a pea LDN works but just like thyroid hormone needs adrenal support to travel, it appears that LDN needs a strong zinc load.

I continue to read incredible success stories, and I will repost my experience when I recommence LDN.



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