Has anyone tried this? I am on day 3 test of CBD as made by Bluebird
pharmaceuticals, 15 drops twice a day. It's been on CNN as a product that
stops seizures in children. CBD is one of twentysome thing dirivatives of
cannabis. It is non psychoactive and legal in all 50 states with out any
...@gmail.comwrote:
Patti;
Have you heard of River Pharmacy? www.riverpharmacy.ca it makes it
possible to take what you need for much less money.
Dalton
From: Pat Voorheis pjv1...@chartermi.net
Date: Wed, 12 Mar 2014 20:05:27 -0400
To: James Berg molokai...@gmail.com
Cc: Janice Nichols jannic
I am still trying to find Meiling Caperton: Does anyone have contact with
her?
On Fri, Mar 21, 2014 at 10:58 AM, James Berg molokai...@gmail.com wrote:
Pat--You misunderstood what I wrote. I was taking 150mg twice a day and I
consulted with Sandy because my leg spasms had ceased. Sandy had
Meiling, if you are still in Hawaii, please give me a holler--I thought I
was alone here.
Jim
Hey Dalton,
I have been out of it since last October. A gangrenous gall bladder nearly
did me in. Doctors missed it and saw only my kidneys and bladder being
infected. then the gall bladder erupted and they were vacuuming out my
guts again and again.
But that not the reason I called, only why
, 2012 at 10:28 AM, James Berg molokai...@gmail.com wrote:
I'm very interested. I saw Sandy's review.
James Berg
PO Box 650
Kapaa, Hawaii
96761
On Fri, Jul 6, 2012 at 4:35 AM, susan zieke zri...@charter.net wrote:
Hi everyone, I wrote/drew a book about life with TM and would like to
share
Akua--Thank you for the web sites. I had never thought about doing
Wheelies and how learning the balance of it would help me daily with
visiting friends who have no ramps for getting over thresholds. Now I am
trying to learn how to do it. freedom, that is what it is all about.
I am going
Thanks to all of you--I think the Quickie 2 will be perfect for me--Colours
would be good if I were younger. But thank you all for your help.
I am looking for a manual model, removable arms
On Thu, Aug 2, 2012 at 1:21 AM, Butcher, Bernie (SFS)
bernie.butc...@honeywell.com wrote:
Electric or manual?
** **
*Bernie*
--
*From:* James Berg [mailto:molokai...@gmail.com]
*Sent:* Wednesday
I keep buying wheel chairs that are junk. Does anyone have a model to
recommend?
Hi all--I'm one who has tried all of the drugs and learned about Lyrica
from Dalton. Now I can't live without it. My legs spasm so bad that
without it that my wife would leave me if I didn't take it. Seriously,
there was no sleep for either of us before the Pregabalin (generic
Lyrica). I
Hands or legs? Not sure if I am writing to Betty or Elizabeth?- anyway
your are able to walk, not perfectly, but she can get around. Yet she has
hand coordination problems that take away from her the things she loved to
do. My legs don't work at all so I can't go anywhere with out my wheel
:* Elizabeth Clark xbeecla...@gmail.com
*Sent:* Tuesday, March 27, 2012 5:22 PM
*To:* 'Susan Kleinz' skle...@cox.net
*Cc:* 'James Berg' molokai...@gmail.com ; 'transverse
myelitis'tmic-list@eskimo.com
*Subject:* RE: [TMIC] No mail
Hi Susan,
Just curious… was the carpal tunnel due to pre-TM
Just checking if there is something wrong with my email
I have received nothing on the Tm site since March 14. Would somebody send
me a Hi so I know you all are still there?
in college and had
a very severe flu that put him in the hospital.For 3-4 days he could
not walk, then got his leg strength back. There are a few lucky ones that
get hit with a really light case, just as there
are those unlucky enough to have a severe case.
Janice
*From:* James Berg molokai
hit with a really light case, just as there
are those unlucky enough to have a severe case.
Janice
*From:* James Berg molokai...@gmail.com
*Sent:* Tuesday, February 21, 2012 2:06 PM
*To:* Bekki Briggs bekk...@live.co.uk
*Cc:* transverse myelitis tmic-list@eskimo.com
*Subject:* Re: [TMIC
That is not really a lot of steriods. My IV steriods was for 6 days, with
a new bag every eight hours-you are very lucky. I lost my legs, bladder and
bowels in an eight hour period. I have been in a wheel chair ever since.
My question is, was there someother treatment that 'cured' your symptoms?
in Texas
PS - Sorry if the typing is large, my eyes have gotten real bad this past
year.
From: Dalton Garis malugss...@gmail.com malugss...@gmail.com
To: James Berg molokai...@gmail.com molokai...@gmail.com;
a...@artfarm.com
Cc: tmic-list@eskimo.com
Sent: Saturday, February 18, 2012 5:39 PM
Wow! Dalton really says it well. I was somewhat down this morning and
then reading his email and remembering what you have been through, it
pulled me up and I can move on today instead of feeling sorry for myself.
What really got me was Dalton's reference to his wife and how she cares for
him.
That is very accurate information Akua has provided not only to you,but to
the whole community. I too have never heard of steroids being continuously
prescribed. My doctors weened me off them after a few weeks. They didn't
help anyway.
Jim
On Fri, Feb 17, 2012 at 6:37 PM, a...@artfarm.com
grandchild (boy) was born .Waiting for god to
decide for mom, then will make trip to MS to see grandson.I am having
MRI's tomorrow - will let u know outcomes when things have settled down
Candy
Sent from my iPad
On Feb 8, 2012, at 5:16 PM, James Berg molokai...@gmail.com wrote
Candy--welcome to the group. I can't wait to share stories with you!
Jim
On Mon, Feb 6, 2012 at 7:44 PM, Janice Nichols jan...@centurytel.netwrote:
Candy,
You are on the website and how are you doing?
Janice
I usually don't forward things but since I have eye problems I thought I'd
share
Jim
-- Forwarded message --
From: James Berg jamesrb...@yahoo.com
Date: Tue, Feb 7, 2012 at 10:53 AM
Subject: Fw: Motion induced blindness
To: molokai...@gmail.com molokai...@gmail.com
Thanks to all who replied. Betty and Dalton seem to have experienced the
problem. It is certainly not banding which I have all the time, Dalton
referred to possible seizures from the squeezes and that is something I
have been worried about. I will check up on the medication Dalton has
Way cheaper--Just go on line to River Pharmacy--I am ordering Symbicort
today for my COPD--it's half the price. I get my Lovastatin and Atenalol
(Cholesterol and Blood Pressure) there as well. Always generic but potency
is there.
About Lyrica or Pregabalin--I take 150mg caps four times a day at
From the discussion of Pins and Needles it seems that most of you are able
to get around and have some use of your legs. I have pins and needles from
my feet to my belly and no use of my legs at all. And they weigh a ton.
Been like this since day one. Did any of you lose the use of your legs
Definite scam
On Tue, Jan 3, 2012 at 9:00 AM, pat cooley patticoole...@gmail.com wrote:
Kevin thanks for checking into this. I figured it was a scam.
Patti - Wisconsin
On Tue, Jan 3, 2012 at 9:07 AM, kevin weilacher hwyfli...@yahoo.comwrote:
Scam
Gerry and Pati--you can control the cost by buying your meds a River
Pharmacy--out of India--they are honest and the drug is quality
Jim
On Wed, Dec 28, 2011 at 6:01 PM, pjv1...@chartermi.net wrote:
Gerry,
Many of us faced the same thing. Movement and feeling also brought the
feeling of
I agree with Dalton-Lyrica is my drug of choice. But please understand
that you will not appreciate what Lyrica does until it builds up a level
in your system and that takes about two weeks. Bacofen, neurotin etc, etc
did nothing for me even in large doses. I hate narcotics but have found
that
Did anyone see the CBS News piece on TM and Scuba diving? another
possibility.
Thank you all for the very quick response to my question about the Shingles
vaccine. I wanted to reply individually to you all but somehow the computer
won't allow me to access the 15 people who tagged on to Dalton's email.
The results indicate some interesting things.
1) Neuro's and Doctors
the neuro's who diagnosed my TM thought it may have been caused by a bout of
Shingles I had. Two years have passed and my wife is worrying I might get
another bout of shingles that would result in more TM damage. Should I get
a Shingles vaccine shot or is that risking another attack of TM? The
Roger--I used to feel that way most every day--I am a burden on my
family--too old to do anything but drink beer and watch TV. I might as well
die. They have worked very hard to improve my view on life--I am a
para--they wanted to get me into the State vocational rehab program and my
attitude
river pharnacy
On Wed, Jun 29, 2011 at 5:29 AM, Dalton Garis malugss...@gmail.com wrote:
Friends;
Can whomever posted the name of that online drug store for cheap
prescriptions please repost? It was something like Black River, or Swift
River, or something.
Thanks,
Dalton Garis
From:
Dalton--thank you so much for steering me to Lyrica. after three weeks of
450 mg a day, I guess I reached my saturation point and rather than taking
it on a schedule, I take it when my legs start to jump again and it quiets
them in about 30 minutes.
I sharpen knives as a small business and I had
:* Wednesday, June 01, 2011 11:09 PM
*To:* Janice Nichols jan...@centurytel.net
*Cc:* James Berg molokai...@gmail.com ; tmic-l...@eskimo.net
*Subject:* Re: [TMIC] Hey
Hi everyone, my sincere apologies… My e-mail account was hacked and this
e-mail was sent to everyone in my address book. I have nothing
I finally gave up my no drugs stand and started taking Lyica to see if it
would calm my legs. I slowly reached a point where at 150 mg, three times a
day (450mg total) I can see some improvement. The spasms are smaller and
the pins and needles or vibrating is less. My question is
how high a
Gunny--you know I support you. Semper fi
Did anyone see the Mystery Diagnosis program on TM? Just aired today
where I live.
I checked out the web sites today and unless you have Lou Gherigs disease
you have the two year wait from approval which takes 6 months if you are
lucky.
On Wed, Apr 27, 2011 at 11:04 AM, Akua a...@artfarm.com wrote:
I too had to wait two years. I applied immediately, too. The wait for
I am having a bad day--the thrumming is at its worst and the banding has
gotten wider and tighter--to the point I couldn't eat dinner or breakfast
this morning. Baclofen does nothing. It took four glasses of red wine and
two alergy pills to get me to sleep. Being in the chair now is making the
thanks for the input
On Tue, Apr 26, 2011 at 9:08 AM, john snodgrass jcs...@yahoo.com wrote:
ativan along with hydrocodone use to ease the banding but that does not
have much effect anymore for me
--- On *Tue, 4/26/11, James Berg molokai...@gmail.com* wrote:
From: James Berg molokai
Checking with Shepherd Center in Atlanta who started a Research project in
October to regrow the mylin sheath with stem cell injection, I was pleased
to see that there are now 5 organizations doing the same research in order
to verify results--verifying results is very important to get the FDA to
research can lead to helping others with cns problems,,i
wish them God speed!
seen a video,,a lot of people need it everyday !
--- On *Sat, 4/16/11, Susan Ebling slebl...@gmail.com* wrote:
From: Susan Ebling slebl...@gmail.com
Subject: Re: [TMIC] Stem Cell Research
To: James Berg molokai
I received my first SSDI check 6 months after filing--a one month check
with no retro active pmts. Yes my SSDI is partially taxed.
On Sat, Apr 9, 2011 at 3:20 AM, rn11...@yahoo.com rn11...@yahoo.com wrote:
Hi John,
I've been on SS disability since early 1996;got tm August 1995.
Did it
This is bullshit--my wife and I were contacted with a similar scam that our
friend was roobed and needed money and after investigation we found our
friend well and happy. Don't fall for it.
On Mon, Apr 4, 2011 at 6:29 AM, beecl...@aol.com wrote:
I'm writing this with tears in my eyes,my
I worry about chiropractors too--I would also like to know if you were ever
paralysed in both legs and confined to a wheel chair and more specifically
how long after onset did you start to get your legs back. I have been in my
chair with no improvement for a year now--is there hope?
On Fri, Apr
My son is raving about the health benefits of Kangen water. does anyone
know anything about it? I am trying to prevent him from spending $4000 on a
bogus idea.
I have started my own experiment with it but am getting it from a local
health food outlet. In the meantime mayber some one has
Not on topic but very worth reading
-- Forwarded message --
From: James Berg molokai...@gmail.com
Date: Mon, Mar 7, 2011 at 11:42 AM
Subject: Fwd: 7%
To: Lani lani_...@hotmail.com
-- Forwarded message --
From: James Berg mauiji...@gmail.com
Date: Mon, Mar 7
I have just watched the home videos of 20 or more MS patients that went thru
this angioplasti treatment to increase blood flow to the spine. Absolutely
amazing results--check for yourself. Neurologists and insurance companies
are fighting it but the results are real. I've always compared the
They have come a long way to developing a cure for our problems.--my biggest
worry is the cost
I had 16 non TM emails today--anyone else?
You guys are amazing--next month will be my first complete year with
TM--without the great support I have from friends and family I would have
pulled the trigger already. I can't see myself getting used to being wheel
chair bound.
On Thu, Feb 3, 2011 at 3:58 PM, Neil McNeil n_...@hotmail.com
The Pedal Machine is called SUNNY, bought it through Amazon and got free
freight.
I can wiggle my toes now and even pull my leg, left only, back about 6
inches and then extend it again.
good luck
On Wed, Jan 26, 2011 at 3:49 PM, Akua a...@artfarm.com wrote:
WOW! wow wow!
So so similar.
So familiar--my wife does my pt because I cannot afford $1600/day for a live
in PT facility that was prescribed for me. I know all about the buzzing--I
call it humming in my feet and the stronger thrumming in my legs. But my
wife found a solution for feet jumping off the wheel chair. I use a
wish him the very best of luck.
Janice
*From:* James Berg molokai...@gmail.com
*Sent:* Tuesday, January 11, 2011 6:32 PM
*To:* Cyril Mansperger cyril.mansper...@gmail.com
*Cc:* transverse myelitis tmic-list@eskimo.com
*Subject:* Re: [TMIC] CCSVI / Liberation Treatment
I am very excited
. I'm not real comfortable
with Internet [I'm a slow typer]. Feel free to call:845-797-9932 can
leave a message, if no answer.
On Tue, Jan 11, 2011 at 3:25 PM, James Berg molokai...@gmail.com wrote:
How are you doing? I have been reading up on this and we allneed to know
how it may
I second your opinions-quality is the same, costis much less.
On Fri, Jan 7, 2011 at 7:02 AM, Patricia Cooley patticoole...@gmail.comwrote:
Cheryl my husband always got his meds from Canada before we had
prescription coverage with Medicare. We were always satisfied with the
quality and
Are all rehabs the same? I was charged $1600/day and treated like cattle.
On Mon, Jan 3, 2011 at 2:49 PM, Akua a...@artfarm.com wrote:
The closest I came to hell on earth was in rehab. I was allowed to fall
twice. I was given the wrong meds daily for nearly two months, I was
insulted and
NOT FOR THE SQUEEMISH!
For those of you who do not know what Cindy is going through, I had a double
break of the femur in 1987 and was given a choice of a nail (rod) or a
cast. With the rod they can make your leg the exact correct length. With a
cast, probably not which means a limp for life.
Does anyone know if Ultra Sound treatment on the affected spinal area helps
or hinders recovery? I am trying it now. Any advise would be helpful.
grasping at straws.
Thanks for the warning--60 minutes did a show on something similar and
provedit was a complete rip off--I believe it was about curing Lou gerhigs
disease. time will tell with these things. they need to be independantly
repeatable.
On Tue, Dec 28, 2010 at 2:07 PM, Cody c...@austin.rr.com wrote:
I found the video on Tm quite interesting. The very short discussion about
stem cell theapy was disappointing though.
On Mon, Dec 27, 2010 at 10:28 AM, Jim Lubin jlu...@eskimo.com wrote:
The first 14 videos from the 2010 Rare Neuroimmunologic Disorders Symposium
are now online. These are all
wow--real help may be on the horizon! Thank you Candis
On Mon, Dec 27, 2010 at 2:02 AM, CANDIS KALLEY cakal...@embarqmail.comwrote:
Remarkable story regarding stem cells!
http://napervillesun.suntimes.com/2859641-417/orr-grekos-progress-bill-doctor.html
Life is short! Break the rules!
-- Forwarded message --
From: James Berg molokai...@gmail.com
Date: Mon, Dec 13, 2010 at 12:49 PM
Subject: Merry Christmas to all
To: tmic-list-requ...@eskimo.com
I want to wish everyone a Merry Christmas and I pray there is some
improvement in your lives during the next year. I
Update from Sheperd Center, Atlanta on Stem cell research with human
subjects to restore the mylan sheath
-- Forwarded message --
From: sciresea...@shepherd.org
Date: Mon, Dec 13, 2010 at 1:08 PM
Subject: Re: Stem cell patient
To: James Berg molokai...@gmail.com
Hi Mr. Berg
I stopped Baclofen because of the muddled mind--I guess we're all different
On Sat, Dec 11, 2010 at 1:36 PM, jack...@att.blackberry.net wrote:
Hi John
I was wondering, why do they think baclofen is making you stumble? I know
side effect is dizzy/tired. For me I have not experienced dizziness
-- Forwarded message --
From: James Berg molokai...@gmail.com
Date: Mon, Nov 15, 2010 at 12:10 PM
Subject: Re: [TMIC] stem cell treatment for spinal cord lesions
To: john snodgrass jcs...@yahoo.com
Now that the US is doing stem cell testing/research on those who have had
spinal
Has anyone used a peddle machine to work their legs? I am using one now
with the idea of keeping my legs from atrophy. My questions are how long
should I run my legs at one session and is it adviseable to do more than one
session a day. I am currently doing 20 minutes and one session a day at
I am told that my case of shingles (herpes zoster) is the most likely cause
of my TM. I've been advised not to have any vacinations/
On Thu, Nov 11, 2010 at 1:32 PM, CANDIS KALLEY cakal...@embarqmail.comwrote:
Carol, Shingles is one of the viruses listed as possible causes for TM.
I refuse
does anyone know when TM was first diagnosed--how long it has been around?
On Sun, Oct 31, 2010 at 12:08 PM, PAMELA S subers...@msn.com wrote:
--
From: subers...@msn.com
To: jcs...@yahoo.com
Subject: RE: [TMIC] burning spine
Date: Sun, 31 Oct 2010 15:06:57
-- Forwarded message --
From: James Berg molokai...@gmail.com
Date: Wed, Oct 20, 2010 at 3:27 PM
Subject: Fwd: Stem Cell research to regrow the myelin sheath
To: mauiji...@gmail.com
-- Forwarded message --
From: James Berg molokai...@gmail.com
Date: Wed, Oct 20
When I was getting ready to leave the hospital the dr.s were telling me I
had to cath every four hours after I left. Yet they were changing my cath
in the hospital every three days? I argued that the more cathing that was
done, the more the chance of infection increased. winning that battle I
I just found this story on the CBS News site along with the video--great
stroy and all hope
On Mon, Oct 11, 2010 at 7:54 PM, James Berg molokai...@gmail.com wrote:
CBS NEWS TONiTE--Johnson Center has injected the first human with embrionic
stem cells to repair the myelin sheath--with FDA
cindy-- you give me someone to look up to--I hope I can do half that good
On Sun, Oct 10, 2010 at 11:31 AM, Deborah Nord Capen
dca...@earthlink.netwrote:
For those of us who are NOT fortunate enough to know Cindy personally,
you need to know that she is confined to a wheelchair, but does not
That is exactly my experience--Now that I have moved I cannot find a doctor
who knows more about TM than I do.
On Sun, Oct 10, 2010 at 8:54 AM, Akua a...@artfarm.com wrote:
She did tell me that if I found anything to try that we have not tried
to bring it to her and we would try it. Thats a
CBS NEWS TONiTE--Johnson Center has injected the first human with embrionic
stem cells to repair the myelin sheath--with FDA APPROVAL--the initial
testing is for newly injured subjects (7-14 days)and it is expected that
results will show within two months. The Dr is highly optimistic. A second
Based on what you guys have written, my son went out last night and bought
me a recliner that is electrically operated. He also raised it up to a
height that matches the wheel chair so I can use the slide board to get in
and out. THANKS !!
On Wed, Oct 6, 2010 at 5:38 AM, john snodgrass
Is it better to spend more time up in my wheel chair or lying in bed? My
legs don't work at all and I want to know the best way to heal--I have
noticed thatr my feet do swll when I am in the chair for hours at a time. I
have no insurance so I can't talk to a doctor about this.
Jim in Hawaii
Osama's Armory
On Mon, Oct 4, 2010 at 10:04 AM, bgunny7...@aol.com wrote:
-- Forwarded message --
From: avi2...@aol.com
To: asaintof...@hotmail.com, anf...@aol.com, bettysilver2...@aol.com,
bgunny7...@aol.com, b...@juno.com, cindy7...@aol.com, calspee...@aol.com,
I would like to know if I am the only person with TM in Hawaii. I would
like to correspond with TM patients in my state.
I'm Jim and I've only had TM for 6 months. I'm 63 and have led a very
active life here in Hawaii. In a two day period in March I became paralyzed
from the waist down. No bladder or bowel function. A week of Solu-medrol
and then a week of IVIG treatment that cost 27,000 and no results. Neither
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