Its me Jon...its been a while and I cant find my logon so reregistered.

Anyway its a bit late to reply to Saundra but here goes...."Herrings Law" sound s a bit fishy to me ; - )

Seriously though, Ive been off LDN for about 8 months..Id felt no improvement from it.

Then I stopped taking it...

Results after stopping were that my mouth wetness improved, my eye wetness improved.....strange but true.

Then one week ago I went back on LDN 4.5mg..this time making my own liquid ..

The next morning after the first dose..I felt terribly groggy.

The following day my mouth became drier.

The day after that..I felt a burst of energy...felt my body was working again..I was walking without pain and with purpose..!

It did not last however...that night I became tense and agitated..I had some chamomile tea to calm me down...

The next day I started to lose the energy gained...I missed my Thyroid meds just incase I was having a burst of hormones induced by the LDN

The next day I started to feel more like before I started the LDN cept the eyes and mouth were getting even drier

The next day I felt as though I had pressure in my head or jaw.

The next day is now and Ive a very dry mouth..trouble making any saliva.

Thats up to date...

Why did I start retaking LDN...well my body started to twitch so much and my hands were going into spasm...perhaps CIDP/GBS type thing...I got out the LDN straightaway hoping that it would help .

Well it may have helped ..as after a few days the twitching settled and the spasms stopped...yet I dont know if it was the LDN or the attack was naturally over. ?!

I may stop LDN soon to see if the symptoms reappear.

One thing I am sure of

The LDN is making me drier ...why ?

Is it making things worse ? was the agitation I felt due to the LDN ?

Is their any more understanding to what LDN really does to the immune system ?

I have a fear that it actually creates moe of the bad attacking cells..yet it offsets this by giving cells energy...so a paradox...

I dont think LDN is all good or all Bad...and it affects people differently...where is the science to what it does to the immune system ?

Cheers

REPOSTED

Hi Jon,

I'm glad you re-registered! Welcome back!

I found your comment on "Herrings Law" interesting. It's probably predicated on some notion that we lose symptoms in some kind of "reverse engineering" way. I think humans are a bit more complex than software programs. It sounds more like science fiction than fact.

As for LDN, I have no idea why some people experience eye improvement, like Lolly, or eye worsening while on LDN. The results seem so contradictory, making the case for the need for (more) studies. So, you suddenly felt pain-free, energetic and purposeful after some transient dry mouth, but then deteriorated into agitation? What dose were you on? I think that's a key question here.

I have my doubts that the burst of energy you experienced was a surge in thyroid hormone. People will say that's what they think they are experiencing, but then labs contradict that. That "surge" is likely the result of LDN. I've seen some very mixed results on lab work -- and so far in thyroid disease, I can't see a clear pattern of LDN's effect. Sometimes thyroid hormone levels are higher, lower or the same. Without a controlled study, it's hard to know what exactly is occurring.

You mention jaw pressure. This is not the first time I've heard this, but in almost all cases, it seems to resolve by lowering the dose or taking LDN every second or third day. Yet, I'm not surprised that it helps resolve Guillain-Barré Syndrome (GBS) symptoms, an inflammatory demyelinating polyneuropathy. LDN seems very successful in MS. You ask, how does one know if it's the drug that causes a cessation in symptoms or whether symptoms wouldn't have dissipated anyway? That's why studies and trials in large sample sizes are needed, IMHO.

It sounds to me like LDN helps resolve some of your symptoms but then worsens others, i.e., helping more with your neural symptoms, but worsening what sounds like Sjogren's (dryness, particularly in the mouth). I wish I had more answers for you. I would check in with Elaine Moore to get her take on it as well. I hope you get a chance to read her LDN book which does a good job of explaining how LDN works and where the research currently stands. You'll definitely want to read Chapter 4 for neurodegenerative disorders.

Jon, I'm wondering if lowering the dose or taking it every few days won't help improve neural symptoms while at the same time preventing your more undesirable symptoms like dry mouth, agitation, etc.