Re: Need Help from MS/lyme folks

[Guest guest]

Fellow Lymie / former LDN / likely will take LDN again person:

Know a few Lymies that are taking LDN, along with their many antibiotics, with

some positive effect.

My sickness started out as optic neuritis in April 2000. My left dyd went from

20/15 to 20/400+ in a six day period. In 2004 I was diagnosed with MS by an MS

clinical trial neurologist. The Rebif made me worse. Copaxone caused fear.

Next was LDN. Even if the stuff did nothing, it was an improvement over the

Rebif and Copaxone.

The name " multiple sclerosis " means " a condition of many scars " and does not say

WHY we have many scars. One way to look at this sickness is the profitable

model using $1300 / month drugs is to combat a confused immune system. An

alternate way to look at the disease is an infection is attacking our immune

system and leaving scars.

I'm beginning to think MS and Lyme are the same disease.

Lyme disease can move REALLY quickly, cause jerking around, brain fog, word

fishing, chills, laying in bed sweating, and more.

Let's find your questions:

Q 1: If this is an MS flare-how do I stop it?

A 1: A Jarisch-Herxheimer reaction, aka " herx " is like being run over by a Mack

truck and left on the road dead! My Lyme Literate Medical Doctor (LLMD) had me

cut back on my antibiotics from twice per day to once per day for two weeks,

then ramp back up to the prescribed dose.

This is an EXCEEDINGLY complex topic. Write to me directly for more

information.

A couple of YouTube videos on Lyme disease:

For symptoms:

www.CanLyme.com

 

Celebrity " Endorsement "

Darryl Hall and his Lyme Disease

 

United States

Lyme disease documentary - " Under Our Skin " (UOS) trailer

NBC interviews UOS star Mandy and UOS producer Andy Abrams

http://www.youtube.com/watch?v=7jeHL1a6fCw

Lyme Expose' by Chronicle (BUNDLED WITH A PIECE ON LDN

!!)http://vimeo.com/2354218

 

Norway

Norwegian Lymie, Lyme Disease " What is going on? " , US Lyme physicians featured

 

Canada

Canadian Television Lyme Expose'

The two (2) part series is called Out of the Wild. View it here:

http://tinyurl.com/yl666t7

 

or (both links go to same place)

http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20091113/w5_lyme_091114/2009\

1114?s_name=W5

>

> ...I need help! My history is fibro 1998, optic neuritis 2006 with vision

loss, increasing neuro symptoms since 2006 (eye pain, bad brain fog, jerking,

twitching, foot scuffing when walking,). Went Lyme route (igenex positive 2

bands, 31, 41)...

>

....BUT I AM SCARED TO DEATH of treatment since treatment has put me into almost

an MS flare 2 X/this time I can't seem to get out of it and spiraling downward.

Given I'm chemially sensitive not sure if my body can handle it. My herx's are

more like MS flares to me.

>

> If this is an MS flare-how do I stop it? I know I need to get sleeping again-

I've lost 18 lbs in 3 months following an MS type diet. My diet has always been

excellent-tried no grains fora few days and did not make adifference . ...So

far MRI's from 2006 and 2008 were clear. Have appointment with NEuro next week

for another evaluation. I know my case is not typical MS (I don't have

fatigue).

>

> I'm terrified right now and need advice-- scared about which path to take in

terms of lyme (since so far treatment sets me into downward spirals) and also

terrified of MS treatments since I'm chemically senstive. Genomic liver panel

shows I do not detox phase II medications well. I also test positive for EBV

(have not tested yet for myco, herpes, cpn etc).

>

> Right now I just need to stop the downward spiral and get sleeping again.

>

> Help!

>

[Guest guest]

What do I do if I need steroids, from Dr. Lawrence

http://preview.tinyurl.com/cfr7um

>

> I need help! My history is fibro 1998, optic neuritis 2006 with vision loss,

increasing neuro symptoms since 2006 (eye pain, bad brain fog, jerking,

twitching, foot scuffing when walking,). Went Lyme route (igenex positive 2

bands, 31, 41).Zhang herbs for 8 months no improvement/added buhner -had neuro

explosion that last4 months -new symptoms jerking/twitching at night,insomnia,

burning, problems speaking, lose breath at night, gait, numbness but could

shake it off, extreme brain fog, jerky movements, spatial off , weak shaky

etc.-felt like I had MS). I improved- found my way out of it. started LDN 2.25

(could n't go to 4.5 for sleep issues). I didn't recover until I started

sleeping again. I did not recover back to baseline from neuro explosion

>

> Was stable on LDN for year 2008. Heavy periods/uterine polyp decided to go

off. Bad Brain fog persisted, eye pain went away, shaky on left side (from neuro

explosion), weaker on left side (from neuro explosion), some jerking.

>

> 2009 started to go down hill in Fall- brain fog got worse, got weaker, more

jerking, more foot scuffing, felt weak.

>

> Did Dr. McCandless flagy/Diflcan fungal treatement . Started in late November.

Got extreme brain fog to point of being non functional by day 8, tongue turend

yellow, lost all taste, smell- stopped flagyl but contined diflucan for full 3

weeks. By end felt pretty ill, shaky in brain, lots of twitching all over.

Through in lyme tea continued to go down hill-- massive jerking/twitching, total

insomnia ,etc. By end of December housebound and non functional. Started LOA at

work march 1st. Every week I get a new scary symptoms. I have head jerking,

weak neck , dizzy, both eyes hurt/major pressure, shaky feeling in brain, body

weak, legs weak, permanent numbness on left side began 1 month ago, right side

becoming numb, problems speaking , swallowing, burning that began with drugs on

back now has spread, some night sweats with the burning, gait off, spatial aware

ness off, still on 3 hours of sleep with medication, nervous system in

overdrive, can't relax or lay down due to head /neck pressure- can't sleep-in

agony basically 7X24 since mid december and spiraling downward ! So I went from

functional and not well- to totally non functional=can't drive etc.

>

> I have appointment with top aggressive LLMD in NY early May (1st available)

BUT I AM SCARED TO DEATH of treatment since treatment has put me into almost an

MS flare 2 X/this time I can't seem to get out of it and spiraling downward.

Given I'm chemially sensitive not sure if my body can handle it. My herx's are

more like MS flares to me.

>

> If this is an MS flare-how do I stop it? I know I need to get sleeping again-

I've lost 18 lbs in 3 months following an MS type diet. My diet has always been

excellent-tried no grains fora few days and did not make adifference . Started

back on LDN 1.1 Mgi in early february since sleep is already so bad- and 2

weeks later numbness started and is spreading. So far MRI's from 2006 and 2008

were clear. Have appointment with NEuro next week for another evaluation. I

know my case is not typical MS (I don't have fatigue).

>

> I'm terrified right now and need advice-- scared about which path to take in

terms of lyme (since so far treatment sets me into downward spirals) and also

terrified of MS treatments since I'm chemically senstive. Genomic liver panel

shows I do not detox phase II medications well. I also test positive for EBV

(have not tested yet for myco, herpes, cpn etc).

>

> Right now I just need to stop the downward spiral and get sleeping again.

>

> Help!

>

[Guest guest]

You NEVER go on steroids with Lyme disease as a rule...unless you want to go onto a fast track to death. Patients usually feel the benefits of the steroid initially, but then the steroid triggers this stealth pathogen to become extremely active and aggressive. There are very rare cases where an experienced Lyme literate MD will prescribe a very low dose of steroids, for a very short time, for patients who have become so chemically sensitive they can't tolerate antibiotics. This is very dangerous to do...you have to have a VERY experienced Lyme doctor doing this.

Re: Need Help from MS/lyme folks

Posted by: "art_ldn" rtee54@... art_ldn

Fri Mar 12, 2010 3:37 pm (PST)

What do I do if I need steroids, from Dr. Lawrence http://preview.tinyurl.com/cfr7um--- In low dose naltrexone , "y093666" <y093666@...> wrote:>> I need help! My history is fibro 1998, optic neuritis 2006 with vision loss, increasing neuro symptoms since 2006 (eye pain, bad brain fog, jerking, twitching, foot scuffing when walking,). Went Lyme route (igenex positive 2 bands, 31, 41).Zhang herbs for 8 months no improvement/added buhner -had neuro explosion that last4 months -new symptoms jerking/twitching at night,insomnia, burning, problems speaking, lose breath at night, gait, numbness but could shake it off, extreme brain fog, jerky movements, spatial off , weak shaky etc.-felt like I had MS). I improved- found my way out of it. started LDN 2.25 (could n't go to 4.5 for sleep issues). I didn't recover until I started sleeping again. I did not recover back to baseline from neuro explosion> > Was stable on LDN for year 2008. Heavy periods/uterine polyp decided to go off. Bad Brain fog persisted, eye pain went away, shaky on left side (from neuro explosion), weaker on left side (from neuro explosion), some jerking.> > 2009 started to go down hill in Fall- brain fog got worse, got weaker, more jerking, more foot scuffing, felt weak.> > Did Dr. McCandless flagy/Diflcan fungal treatement . Started in late November. Got extreme brain fog to point of being non functional by day 8, tongue turend yellow, lost all taste, smell- stopped flagyl but contined diflucan for full 3 weeks. By end felt pretty ill, shaky in brain, lots of twitching all over. Through in lyme tea continued to go down hill-- massive jerking/twitching, total insomnia ,etc. By end of December housebound and non functional. Started LOA at work march 1st. Every week I get a new scary symptoms. I have head jerking, weak neck , dizzy, both eyes hurt/major pressure, shaky feeling in brain, body weak, legs weak, permanent numbness on left side began 1 month ago, right side becoming numb, problems speaking , swallowing, burning that began with drugs on back now has spread, some night sweats with the burning, gait off, spatial aware ness off, still on 3 hours of sleep with medication, nervous system in overdrive, can't relax or lay down due to head /neck pressure- can't sleep-in agony basically 7X24 since mid december and spiraling downward ! So I went from functional and not well- to totally non functional=can't drive etc.> > I have appointment with top aggressive LLMD in NY early May (1st available) BUT I AM SCARED TO DEATH of treatment since treatment has put me into almost an MS flare 2 X/this time I can't seem to get out of it and spiraling downward. Given I'm chemially sensitive not sure if my body can handle it. My herx's are more like MS flares to me.> > If this is an MS flare-how do I stop it? I know I need to get sleeping again- I've lost 18 lbs in 3 months following an MS type diet. My diet has always been excellent-tried no grains fora few days and did not make adifference . Started back on LDN 1.1 Mgi in early february since sleep is already so bad- and 2 weeks later numbness started and is spreading. So far MRI's from 2006 and 2008 were clear. Have appointment with NEuro next week for another evaluation. I know my case is not typical MS (I don't have fatigue).> > I'm terrified right now and need advice-- scared about which path to take in terms of lyme (since so far treatment sets me into downward spirals) and also terrified of MS treatments since I'm chemically senstive. Genomic liver panel shows I do not detox phase II medications well. I also test positive for EBV (have not tested yet for myco, herpes, cpn etc).> > Right now I just need to stop the downward spiral and get sleeping again. > > Help!