I was diagnosed with MS in 2002 when i was 17 after an MRI scan showing lesions in my brain and lower spine. I also had a lumber puncture but i was never told the results - i asked my Dr for the results recently.
I had the typical MS systems of bad balance, leg weakness, and bladder frequency/urgency/control problems.
But also had other symptoms too, I had an involuntary twitch in my eye, although i could control it sometimes,
I also get urgencies to make noises but only in discreet environments, and i can fully control this.
At the age of 14 lost lots of weight and appetite vanished, and has never returned since, and since that age have turned from being stock /slightly chubby to stick thin. i find it very difficult to put weight on, to do so i have to seriousky over eat.
At the age of 9-10 Eczema appeared and has ever since , randoly comes and goes.
I started using LDN in January 2008 i started LDN on 3mg, for the first 4-6 weeks i had great results, my symptoms slightly improved - walking/balance/bladder all slightly improved, and i didnt progress.
Around March - July 2008 i started to get much worse, for no reason, my symptoms deteriorated much quicker than if i hadnt taken LDN.
Every dose i took made me alot worse, besides 2mg , which didmt make me progress.
Since July 08 i have stuck to the only dose which doesnt make me worse, and stops my progression - 2mg
Anyway thanks to someone on a different forum this led to me having a specialist Lyme disease test - lympochete transformation test , which came back Positive showing 'current ongoing active lyme borrelia'
(i had a western blot test in July 08 which came back negative, but they are well known to show false negatives)
So i then researched treatments and came to the decision to use a Rife machine (the Doug Coil machine) , which kills only spirochetes but with no side effects/risks/doesnt trigger the spirochetes defense mechanism.
Which i started using in May 09. I have never done antibiotics for Lyme.
I understand Lyme treatments prove effectiveness by the patient having a Herxheimer reaction, but since starting my Rife machine in May 2009, i have NEVER had a herx reaction. Which everyone with Lyme using a Rife machine cannot understand why, as everyone does.
This is showing that none of the bugs/spirochetes are being killed.
So i researched more and came across a message on the LDN yahoo group from November 08 saying:
> > LDN can and usually does backfire with untreated Lyme disease. That
> > is how I discovered that I have Lyme, because I tried LDN and
> > everything got much worse, and prompted me to get testing done that
> > revealed Lyme. Since then I have heard the same story repeated again
> > and again from many people with Lyme.
> > In my opinion, the ability to tolerate LDN is a good test of the
> > relative severity of infection when you do have Lyme. LDN seems to
> > "turn the lights on" for your immune system and reveal everything that
> > was previously invisible. If there's nothing there, you're fine. If
> > your body is riddled with spirochetes, you're in for a BUMPY ride as
> > all-out warfare commences.
> > Lyme sufferers that have been on antibiotics for extended lengths of
> > time or have less severe cases seem to do alright with LDN. I hope to
> > introduce it again in the future to help maintain progress or
> > remission achieved with antibiotics.
This is what made me realise that LDN could be forcing the spirochetes into their stealth forms :"L" and "Cyst" forms which the rife machine cannot reach, hence not killing any spirochetes and 'herxing'.
I have now stopped taking 2mg LDN for 3 weeks and have started to notice a slight decrease in my mobility, but not too major.
I have been using the doug coil machine once a week but havent had a herx reaction yet.
My question is does my hypothesis of stopping LDN so that the Spirochetes come out of 'hiding' so i can kill them with the rife machine sound realistic/possible?
Also how long would you expect it to take after stopping LDN for my immune system to return completely to normal, and how long for the spirochetes to come out of "L" and Cyst form?
i dont want to stop LDN for too long if the spirochetes never come out, as i will just get worse and less mobile.
Is there a time limit for stopping LDN before i should give up on this theory and go back on LDN?
Do you think aswell as my Central Nervous System (MS) symtoms the eczema and urge to twitch and make noise could be caused by Lyme disease?
Thank you for reading and sorry for writing so much, i just thought it would draw a bigger picture.
Post Edited (adamt) : 9/10/2009 3:47:41 PM (GMT-6)