Re: reaching out yet again

[Guest guest]

My story;

April 2000 : optic neuritis

April 2004 : MS - Rebif, Copaxone (Rebif made me measurably weaker!)

Aug 2006 : MS - LDN then intravenous EAP

March 2008 : Hired Lyme Literarte Medical Doctor (LLMD), diagnosed w/ Lyme

disease (aka borreliosis)

Aug 2010 : hired LLMD #2 and LLMD #3 (have two LLMDs right now)

Not all LLMDs are equal. It is likely best to sift through a couple of LLMDs.

(base decisions of how well health is going -- my story)

The rapid speed of dehabilitation is a potential marker for Lyme Disease. NONE

of the Lyme Disease tests are accurate, not even the fancy $400 western blots.

The western blots are more accurate than the standard test our front line

physicians give us. IgeneX is a good brand.

Once we have had a sickness like this, it burrows into our cells and hides

inside of us, evading our immune systems. The sooner we catch this difference,

the less time the spirochetes have to burrow into us.

List of symptoms

www.CanLyme.com

Trailer for the Lyme Disease documentary " Under Our Skin "

Potentially, Under Our Skin will have a 2-for-1 sale during the month of May

http://www.youtube.com/watch?v=uSsnMQHIJZk

News Story on Lyme Disease being misdiagnosed as MS

http://vimeo.com/2354218

Darryl Hall and his Lyme Disease

Canadian television W5 show on Lyme Disease " Out of the Wild "

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

1114?s_name=W5

I sleep a lot. Feel free to send me a note directly to wake me up.

>

> hi group

> so to summarize things up i have been on sick leave for 5 months out of last

seven months. that's not a good score and i haven't imagined my ms would take

this course after beeing syptom free sept 09 - oct10. but in the last half a

year i have had 4 relapses of different symptoms and severity. unsensitive

hands/legs, even belly and such parts. I am trying to do all I can and losing my

hope currently which even discourages me to continue on BBD as it takes so much

of my energy and effort...

[Guest guest]

I am curious what a lyme doctor typically does to treat.

Can you share what your lyme doctors doing to treat your lyme ?

pharmaceutical antibiotics ?

alternative antibiotics like Samento ?

> Not all LLMDs are equal. It is likely best to sift through a couple of

> LLMDs. (base decisions of how well health is going -- my story)

>

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[Guest guest]

We all paint our own pictures.

After my Optic Neuritis in April 2000, suspected Lyme Disease (borreliosis).

Had my family doc test me for Lyme Disease (borreliosis). As I had not been to

one of two specific areas on the east coast, and did not report a bulls eye

rash, I could not have borreliosis. I peristed and got the standard test. The

result indicated I did NOT have borreliosis. That freed me to pursue my FIRST

MS diagnosis.

The Rebif was giving me very strange results! Spent much time at the medical

school library studying this mess. That is when I began to learn the political

complexities of the disease.

The people in the documentary " Under Our Skin " , available at

www.UnderOurSkin.com, seem to be doing intravenous antibiotics that have a tube

that goes to the heart.

So far, my borreliosis diagnosis in March 2008) was a combination of a clinical

diagnosis (extensive history), and a test from Fry Laboratories. The

confirmation of my diagnosis was my herxheimer reaction to doxycycline (200mg

twice per day). a few more weeks of doxy, I went from using one (1) cane to

walk about, to no (0) canes to move about. At that point, my LLMD really ramped

up my list of abx. A few months later, I lost 40lbs and started using two (2)

canes.

My BIG list of abx from LLMD #1

Fexofenadine

Singulair

metronidazole

Doxycycline

Cefdinir

Colchicine

Unintentionally, ended up w/ TWO LLMDs at the same time in 2010. Have a

renowned (maybe even internationally renowned?). He has his own batch of abx he

prefers to use. From my experience with Rebif, and losing 40lbs with abx, have

been a little skittish on taking more prescription meds.

My LLMD #2 prefers tests from IgeneX.

Last week, started a Lyme-Tea listed in the book " Healing Lyme " by Buhner. The

book is available on Amazon.

The ingredients of the Tea are :

Cat's Claw (15g)

Japanese Knotweed (10g)

Red Root (10g)

Starsaparilla / Smilax (10g)

Stephania (20g)

Still unsure on the total results. At the very least, it's not making me any

weaker.

note: I'm in piss-poor condition. Using either 2 canes or a 4 wheel walker to

move through my house.

Spend much time sleeping / lounging about. Feel free to send me a direct

message to wake me up ;-)

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> > Not all LLMDs are equal. It is likely best to sift through a couple of

> > LLMDs. (base decisions of how well health is going -- my story)

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[Guest guest]

Hi SirR,

In regard to your Lyme diagnosis, you may find this site of interest:

http://tinyurl.com/lyme-alternatives

All the best,

Dudley Delany

http://profiles.yahoo.com/dudley_delany

[Guest guest]

Thanks. I too am convinced that there is something killing me from the inside

out and our medical community diagnosed me with PPMS on 2/1/08. I don't know

what evil is in me; parasites, bacteria, virus, heavy metals, etc. but I am on a

mission to find out. I have had blood drawn for tests so many times, I'm sick of

it. Lyme was one of the first tests.

I was on Avonex and then Copaxone for over a year. They did nothing to stop

progression, so I stopped shooting them. I have been on the Swank Diet now for

almost a year. I still take Baclofen and, like you, need a walker around the

house, forearm crutches for short trips and a wheel chair for any substantial

distances. We live in a two story, so I have to climb the stairs two or four

times a day. I don't know which is more exhausting; the stairs or the shower.

I tried chelation. I tried the O2 barametric chamber. I tried the CCSVI

Liberation procedure. I have been on hormone therapy. I tried different

supplements to try to clean up my body, and more. I spent more than I had.

Currently I am on Kopera's PowerHouse Fast. I read her book, " Cure

Yourself Naturally " , and got real interested. So far, I am only on Day3 of 30

days.

I am not blessing it yet, but you may want to research her methods more in her

book or at http://www.ginascorner.com/

Best wishes.

-Tim

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> > > Not all LLMDs are equal. It is likely best to sift through a couple of

> > > LLMDs. (base decisions of how well health is going -- my story)

> > >

> > >

> > >

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[Guest guest]

Hi Tim,

Here is a website you may find helpful in treating your MS:

http://tinyurl.com/advice-to-msers

With best wishes,

Dudley Delany

http://profiles.yahoo.com/dudley_delany

[Guest guest]

The standard Lyme Disease test is notoriously inaccurate !!! Get a test from a

company like IgeneX. Just after my optic neuritis in 2000, had my family doc

test me with the standard Lyme Test. That test reported I did NOT have Lyme

disease. That freed me mentally / emotionally to get my FIRST MS diagnosis.

My rapid loss of strength was ONE of my first symptoms that REALLY confused me.

Found an article in the physician's web site UpToDate, that reported the time

between MS diagnosis and use of a cane to be 27 years. For me, it was about 6

months between my FIRST MS diagnosis and use of a cane.

By taking walks carrying my GPS and taking a one week break from my Rebif, I was

able to measure the Rebif making me weaker. Shared my data with my renowned

neurologist, and he replied " I've never heard of that before...KEEP TAKING IT " .

Like an idiot, I kept taking my Rebif :-(

With my Comprehensive medical doctor, I took LDN, did intravenous chelation, and

even took the German intravenous MS drug Calcium Ethyl Amino Phosphate (EAP).

The comprehensive doc REALLY promoted diet / having a urine pH over 7. Only way

I was able to have an alkaline urine pH was to eat all grape fruit all the time

for a couple of days. The comprehensive physician was unable to react to my

questions and observations.

He did sign for my first Lyme Disease tests. While we reviewed the test

results, he briefly commented that a chronic infection would explain the acidic

urine.

>

> Thanks. I too am convinced that there is something killing me from the inside

out and our medical community diagnosed me with PPMS on 2/1/08. I don't know

what evil is in me; parasites, bacteria, virus, heavy metals, etc. but I am on a

mission to find out. I have had blood drawn for tests so many times, I'm sick of

it. Lyme was one of the first tests.

>

[Guest guest]

Interesting. So why IgenX? What are they doing different?

Since they are in CA and I am in NJ, I don't know if using them is possible for

me?

-Tim

> >

> > Thanks. I too am convinced that there is something killing me from the

inside out and our medical community diagnosed me with PPMS on 2/1/08. I don't

know what evil is in me; parasites, bacteria, virus, heavy metals, etc. but I am

on a mission to find out. I have had blood drawn for tests so many times, I'm

sick of it. Lyme was one of the first tests.

> >

>

[Guest guest]

Tim I responded to one of your comments and it never got posted and now I cannot

even find it so I am going to post a new message about genus protocol.

>

> hi group

> so to summarize things up i have been on sick leave for 5 months out of last

seven months. that's not a good score and i haven't imagined my ms would take

this course after beeing syptom free sept 09 - oct10. but in the last half a

year i have had 4 relapses of different symptoms and severity. unsensitive

hands/legs, even belly and such parts. I am trying to do all I can and losing my

hope currently which even discourages me to continue on BBD as it takes so much

of my energy and effort... im also taking supplements, resting a lot, going for

walks every day, trying to maintain my health and well being...

> another thing is that i have switched from avonex to rebif a month ago which i

know not many of you approve of yet I feel i dont have many other choices... but

if this doesnt work, I am not going to go for tysabri and will urge the doctor

to give me LDN..

>

> today i called my immunologist to get blood tests result and i have still

active borelia in the IgM field... plus EB virus active... i had mononucleosis

ten years back.. so what is this virus doing there and can it contribute to my

problems along with the borelia? does any of you have any ideas about this?

>

> I'm having a MRI schelduled for 12th May so I am curius what's gonna be there.

Last one I had back in november showed a huge lesion in my spinal cord between

C4-5.

>

> thanks in advance for any feedback or encouragement

>

> diagnosed nov 2008 at age 25

>