Re: Post-Syndrome Lyme and LDN

[Guest guest]

I am the Brad on this link to LDN database under LYME from Dr. Zahavi, look under,

LYME! MS then after 4th IGENEX LYME test,, LYME/Co-Infections

I am still convinced LDN helped me figure out my MS was LYME, and has helped me push through the LYME without going on disability (missed one week of work when I herx'ed after 4th week into LDN, wow that was fall of 2009. It takes a leap of faith to try LDN, I was desperate when I got to LDN, but my right leg and arm are no longer numb, I no longer hold on to walls to walk, and no longer slur uncontrollably when I talk!

I have always done 3 mg LDN (Doc I found to prescribe it did 3 mg for everybody!), I was 251 lbs, now 233 lbs a year later; this might be mainly due to my "antibiotic diet" of 2010 and early 2011. I am still taking 3mg LDN, I skip 1 night a week.

LDN will not cure your LYME, I have done oral and IV antibiotics so far to fight off the LYME, and still a work in progress/"remission".

Ask me anything, all I can do is tell my story, I am not a doctor just and angry engineer.

I have old posts out here on the LDN blog, more my story than anything, look under my ID. Or email ME direct off the group with anything you want to talk about further, ANYTHING.

There are more LYMIES out here that know more than me! Listen to them as well!

Why I am still angry, it's not about me any more, I can/will push through this, it's about the kids I am running into with LYME, chronic LYME; sign Gabbi's Guestbook at the link below, read her STORY, spread the word LYMIES, just tell your stories to those around you! Like Gabbi is saying, it's about AWARENESS!

http://www.withatwistoflyme.org/Home_Page.html

I wish ALL of you on LDN and trying LDN the best. I hope it can do for you, what it has done for me!

BRAD

From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of zahaviSent: Wednesday, February 09, 2011 5:08 AMlow dose naltrexone Subject: [low dose naltrexone] Re: Post-Syndrome LymeImportance: High

Here you will find the experience of 4 lyme patients

https://ldndatabase.dabbledb.com/page/other/tbdgPxzK#

I am using the Free version of SPAMfighter.SPAMfighter has removed 1881 of my spam emails to date.Do you have a slow PC? Try free scan!

[Guest guest]

Fellow Lymie here !

>

This LDN board was instrumental in me escaping the clutches of the

medical-industrial-complex MS Cult. For the group opening my mind, I am forever

grateful !!

>

The new open-mind gave me room to explore neuroborreliosis, aka Lyme disease.

Currently up to Lyme Literate Medical Doctor (LLMD) #3.

>

After being sick / losing vast amounts of health and strength, I had come to the

conclusion that ALL of our docs treat to a protocol of some sort. They are NOT

trouble shooters. If we don't fit the protocol, either we will be made to fit

the protocol, or we have to hire the next physician / protocol combo.

I too am angry how my early physicians only seemed able to watch me get sick /

go from normal walking to walking w/ a cane to walking w/ two canes. they only

prescribed more medicine, supplements, or tests so they could feel " medical " .

It was ME, the PATIENT that had to finally figure the mess out!

Give the physician / protocol combo about six months before deciding to stay or

go. LLMDs typically have a 6 month wait. It's tricky to time the mess.

>

Did used to have my own bio-tech lab. Feel STRONGLY that the Rebif was the end

of my life. My sickness forced me to a normal laboratory and eventual

disability retirement. On my Patients Like Me chat board was able to pull about

6 others out of the MS-cult.

>

> I am the Brad on this link to LDN database under LYME from Dr. Zahavi,

> look under,

> LYME! MS then after 4th IGENEX LYME test,, LYME/Co-Infections

>

> I am still convinced LDN helped me figure out my MS was LYME, and has

> helped me push through the LYME without going on disability (missed one

> week of work when I herx'ed after 4th week into LDN, wow that was fall

> of 2009. It takes a leap of faith to try LDN, I was desperate when I

> got to LDN, but my right leg and arm are no longer numb, I no longer

> hold on to walls to walk, and no longer slur uncontrollably when I talk!

>

> I have always done 3 mg LDN (Doc I found to prescribe it did 3 mg for

> everybody!), I was 251 lbs, now 233 lbs a year later; this might be

> mainly due to my " antibiotic diet " of 2010 and early 2011. I am still

> taking 3mg LDN, I skip 1 night a week.

>

> LDN will not cure your LYME, I have done oral and IV antibiotics so far

> to fight off the LYME, and still a work in progress/ " remission " .

>

> Ask me anything, all I can do is tell my story, I am not a doctor just

> and angry engineer.

>

> I have old posts out here on the LDN blog, more my story than anything,

> look under my ID. Or email ME direct off the group with anything you

> want to talk about further, ANYTHING.

>

> There are more LYMIES out here that know more than me! Listen to them

> as well!

>

> Why I am still angry, it's not about me any more, I can/will push

> through this, it's about the kids I am running into with LYME, chronic

> LYME; sign Gabbi's Guestbook at the link below, read her STORY, spread

> the word LYMIES, just tell your stories to those around you! Like Gabbi

> is saying, it's about AWARENESS!

> http://www.withatwistoflyme.org/Home_Page.html

>

> I wish ALL of you on LDN and trying LDN the best. I hope it can do for

> you, what it has done for me!

>

> BRAD

>

>

> ________________________________

>

> From: low dose naltrexone

> [mailto:low dose naltrexone ] On Behalf Of zahavi

> Sent: Wednesday, February 09, 2011 5:08 AM

> low dose naltrexone

> Subject: [low dose naltrexone] Re: Post-Syndrome Lyme

> Importance: High

>

>

>

>

> Here you will find the experience of 4 lyme patients

>

> https://ldndatabase.dabbledb.com/page/other/tbdgPxzK#

> <https://ldndatabase.dabbledb.com/page/other/tbdgPxzK>

>

>

> ________________________________

>

> I am using the Free version of SPAMfighter

> <http://www.spamfighter.com/len> .

> SPAMfighter has removed 1881 of my spam emails to date.

>

> Do you have a slow PC?

> <http://www.spamfighter.com/SLOW-PCfighter?cid=sigen> Try free scan!

>

[Guest guest]

I don't have MS, or LYme (as far as I know...) but my story is similar to

yours.

I hardly went to the doc. Quite suddenly, intermittent achiness I'd been having

became constant and quite severe. I was darkening the doc's doorstep

increasingly frequently.

I, too went from walking, to a cane and ultimately I was in a wheelchair.

My doc just kept adjusting meds. I was never really given anythng for pain.

Once I got the FM dx, it was like all effort stopped.

Finally the nurse at the office gave the doc a lecture or something and told her

to DO something. I finally got sent to the big city rheumy who, without any

further testing, dx'd osteoarthritis. Yep, some rare tropical disease that was,

LOL! She did, of course, do tests, but they did not change the dx.

The whirlwind that resulted in my having both hips replaced about 4 months later

did not solve the FM problem, but it reduced my pain by about 95% and increased

my mobility to a place where I don't think it's every been (I'd had ortho

problems as a kid, and this was corrected with my hip replacement).

I do think that the physiological stress of the surgery worsened the FM/CFS

(which I'm actually beginning to think is a thyroid problem), so I am still

'disabled' but I believe that groups like this one will help me to get myself

back in action.

L'chaim

Jaye

> >