Re: New to you but not LD

[Guest guest]

LD is not an accepted diagnosis in North Texas either, though I am changing that

a bit. I am emailing to whomever requests it, Lyme disease Risk Assessments by

the US Army, done in the 80's and 90's that say Texas and many other states have

had Lyme since this period of time.

I have suffered from LD and other various co-infections for 39 years. Started

out as CFS, Fibro, irritable bowel problems, etc...

and went into full blown MS problems after the birth of our second child in

1994. Before I got to the right LLMD, in PA, I was using a walker/wheelchair and

I was slowly dying, or so I am told. I did not have the depression, but I did

have the fog brain, neuro, arthritic problems with excruciating nerve pain.

Unfortunately, I could not tolerate the medications to help the neuropathy. It

was hell, but when I found my doctor, who understood the complexity of these

illnesses, I began to respond to treatment. It has been a long hard two years,

but I am going back to college, working, and raising a busy family at the same

time. There is hope, so hang in there!

Info or evidence of chronic Lyme?....you can go to our site

www.lifelyme.org<http://www.lifelyme.org/> and if you want evidence, written by

the idiots who say there is no such thing as chronic Lyme, yet they wrote about

it in 80's and 90's, then go to

http://www.lymecryme.com/<http://www.lymecryme.com/> it starts out as a

petition to sign, but up top (it is hard to see at first) there is info you can

look at.

To understand chronic Lyme one needs to learn about the microbiology

(pleomorphic capability) and two great sites are Alan Mac's

http://stcatherines.chsli.org/research.htm<http://stcatherines.chsli.org/researc\

h.htm> scroll down to Lyme paper, and then Tom Grier's Complexities of Lyme

http://www.canlyme.com/tom.htm<http://www.canlyme.com/tom.htm>

I also have a pdf on the L form, which is the cell wall deficient form. In

order for antibiotics to kill any bacteria there has to be a cell wall

formed...and if this wasn't bad enough...when the cell wall does finally emerge

with Lyme there is only a certain window of time that antibiotics can do their

work, and if that wasn't tough enough, this bug has a long replication time of

18 months, hence long term therapies for treatment. The other infections that go

hand and hand with Lyme also have the ability to reoccur over time.

I hope this info will be helpful, and I hope 2008 will bring a healthier year to

you.

Take care-

Torrey

Vice Pres.

The Lanford Foundation- Lifelyme, Inc.

klcst@...<mailto:klcst@...>

Lifelyme of Texas

www.lifelyme.org<http://www.lifelyme.org/>

[ ] New to you but not LD

Hi guys! I am a newbie to this group & your probably going to be the

best thing going for me.

You see, in spring 1987 I was infected w/ LD, but not diagnosed or

any treatment until 1991. Thank God I had had 2 ECMs & then textbook

symptoms until diagnosis in '91. There were medical notes about the

ECMs & then all the rest. 1st you have to understand that LD is not

an accepted diagnosis here deep in South Texas where I live. You're

not going to believe me but the regional Infectious Disease

specialist made a public (newspaper) statement that LD in Texas was a

myth. Thankfully in '91 I found a wonderful lady at TX Dept. of

Health who confirmed my diagnosis & collaborated w/ my rural GP on

treatment regimens. Apparently by those years standards the treatment

had not been long enough. 6 mos ago, after years of serious health

probs (more on that shortly) my rheumatologist, knowing of LD,

thought I had been left w/ a raging auto-immune disorder. She flooded

me w/ immuno-suppressants & strong steroids. My knees exploded in

swelling & pain. I became very ill & my whole body was wracked w/

pain. And believe it or 1 of my original ECMs reappeared. The drug

combination was like gas on a fire. My system flooded w/ spirochetes.

I've been on doxicycline since then.

A short list of my health battles since '91; degenarative disc

disease - lumbar= 2 fused, 1 unstable. thorasic= 1 vertebre

inmpinging nerve. Cervical is a wreck= 3 serious damge vertebrae 4

nerves impinged (EMG), numbness in both arms. Major arthriric changes

in every major joint. Left shoulder rebuilt. Surgery both wrists.

Fibromyalgia, MFS, CFS. Major depresion & cognitive disorders.

Osteonecrosis in both knees ....(there's more).

My ? is what heppens to a person that's been LD active 20 years. I'm

sure you all know there's almost no substantive info out there about

Chronic LD. Searches come up w/ plenty of info about the 1st 2 stages

of LD. But 3rd stage or Chronic - 0, nothing.

Can anybody out there help me? I have no idea where it goes from here.

[Guest guest]

lisa,

it's great to know you're doing better. do you still have pain/fatigue? so i

take it you were misdiagnosed and it was lyme the whole time?

happy new year.

chelsea

Doyle-Torrey <klcst@...> wrote:

LD is not an accepted diagnosis in North Texas either, though I am

changing that a bit. I am emailing to whomever requests it, Lyme disease Risk

Assessments by the US Army, done in the 80's and 90's that say Texas and many

other states have had Lyme since this period of time.

I have suffered from LD and other various co-infections for 39 years. Started

out as CFS, Fibro, irritable bowel problems, etc...

and went into full blown MS problems after the birth of our second child in

1994. Before I got to the right LLMD, in PA, I was using a walker/wheelchair and

I was slowly dying, or so I am told. I did not have the depression, but I did

have the fog brain, neuro, arthritic problems with excruciating nerve pain.

Unfortunately, I could not tolerate the medications to help the neuropathy. It

was hell, but when I found my doctor, who understood the complexity of these

illnesses, I began to respond to treatment. It has been a long hard two years,

but I am going back to college, working, and raising a busy family at the same

time. There is hope, so hang in there!

Info or evidence of chronic Lyme?....you can go to our site

www.lifelyme.org<http://www.lifelyme.org/> and if you want evidence, written by

the idiots who say there is no such thing as chronic Lyme, yet they wrote about

it in 80's and 90's, then go to

http://www.lymecryme.com/<http://www.lymecryme.com/> it starts out as a petition

to sign, but up top (it is hard to see at first) there is info you can look at.

To understand chronic Lyme one needs to learn about the microbiology

(pleomorphic capability) and two great sites are Alan Mac's

http://stcatherines.chsli.org/research.htm<http://stcatherines.chsli.org/researc\

h.htm> scroll down to Lyme paper, and then Tom Grier's Complexities of Lyme

http://www.canlyme.com/tom.htm<http://www.canlyme.com/tom.htm>

I also have a pdf on the L form, which is the cell wall deficient form. In order

for antibiotics to kill any bacteria there has to be a cell wall formed...and if

this wasn't bad enough...when the cell wall does finally emerge with Lyme there

is only a certain window of time that antibiotics can do their work, and if that

wasn't tough enough, this bug has a long replication time of 18 months, hence

long term therapies for treatment. The other infections that go hand and hand

with Lyme also have the ability to reoccur over time.

I hope this info will be helpful, and I hope 2008 will bring a healthier year to

you.

Take care-

Torrey

[Guest guest]

welcome. i'm new too.

chelsea

bgpafbc <bgpa@...> wrote:

Hi guys! I am a newbie to this group & your probably going to be the

best thing going for me.

You see, in spring 1987 I was infected w/ LD, but not diagnosed or

any treatment until 1991. Thank God I had had 2 ECMs & then textbook

symptoms until diagnosis in '91. There were medical notes about the

ECMs & then all the rest. 1st you have to understand that LD is not

an accepted diagnosis here deep in South Texas where I live. You're

not going to believe me but the regional Infectious Disease

specialist made a public (newspaper) statement that LD in Texas was a

myth. Thankfully in '91 I found a wonderful lady at TX Dept. of

Health who confirmed my diagnosis & collaborated w/ my rural GP on

treatment regimens. Apparently by those years standards the treatment

had not been long enough. 6 mos ago, after years of serious health

probs (more on that shortly) my rheumatologist, knowing of LD,

thought I had been left w/ a raging auto-immune disorder. She flooded

me w/ immuno-suppressants & strong steroids. My knees exploded in

swelling & pain. I became very ill & my whole body was wracked w/

pain. And believe it or 1 of my original ECMs reappeared. The drug

combination was like gas on a fire. My system flooded w/ spirochetes.

I've been on doxicycline since then.

A short list of my health battles since '91; degenarative disc

disease - lumbar= 2 fused, 1 unstable. thorasic= 1 vertebre

inmpinging nerve. Cervical is a wreck= 3 serious damge vertebrae 4

nerves impinged (EMG), numbness in both arms. Major arthriric changes

in every major joint. Left shoulder rebuilt. Surgery both wrists.

Fibromyalgia, MFS, CFS. Major depresion & cognitive disorders.

Osteonecrosis in both knees ....(there's more).

My ? is what heppens to a person that's been LD active 20 years. I'm

sure you all know there's almost no substantive info out there about

Chronic LD. Searches come up w/ plenty of info about the 1st 2 stages

of LD. But 3rd stage or Chronic - 0, nothing.

Can anybody out there help me? I have no idea where it goes from here.

Chelsea

---------------------------------

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

Dear Chelsea:

There are many things to learn and devise a plan. Go to

_http://www.ilads.org/_ (http://www.ilads.org/) and find out about docs,

antibiotic treatments

and alternative treatments. There a good books like " Top 10 Lyme Treatments "

by Rosner, and " Healing Lyme " by Buhner. There are many forums that

talk about a specific alternative treatment, Salt-C, Rifing, Buhner herbs, MMS,

etc. I, personally, am doing herbs and supplements. Its best to look into

the different options and decide what fits your personality, budget, etc. I

am not going to say one method works better than the others because I think a

certain method works in varying degrees with the person using it and how

they use it. Some people prefer to do the medical route and even fly to LLMD's

to get good treatment. My suggestion is research and pray and go with your

gut on what feels right for you. From your description of complaints, I would

start with a chiropractor if you can find the money for it. Not that it

would cure you, but it should definitely be a good start on your healing

journey.

Heidi N

**************************************See AOL's top rated recipes

(http://food.aol.com/top-rated-recipes?NCID=aoltop00030000000004)

[Guest guest]

hi heidi!

thanks for the input and happy new year.

i have an appointment with my llmd on 1/25. she does antibiotics and herbs,

vitamins. i would never consider (for myself that is) doing only herbs and

supps. i feel antibiotics with nutrition, hormone balance, detoxing is the best

way to go. i have way too much bacteria to eschew antibiotics as i have tested

positive for more than lyme. i also have high titers of bartonella, legionella

p, mycoplasma p, chlamydia p, rickettsia and on monday i'm getting an erlicha

test. i have low hormones too. with low hormones, the immune system does not

work, no herb or vitamin can take the place of low estrogen/thyroid/adrenals,

but herbs (i don't know which ones yet until i investigate further and see my

doc) work well to help the antibiotics work better and some are used for

detoxing. i've read the article about warren levine, md he's a LLMD and has

never seen a case resolve (besides providing temporary relief )with herbs alone.

everyone can choose what is best for them. for me, i'll

combine meds with supplements. i'm too science minded--lol. i like to use as

few drugs as possible though.

chelsea

Ambitionn01@... wrote:

Dear Chelsea:

There are many things to learn and devise a plan. Go to

_http://www.ilads.org/_ (http://www.ilads.org/) and find out about docs,

antibiotic treatments

and alternative treatments. There a good books like " Top 10 Lyme Treatments "

by Rosner, and " Healing Lyme " by Buhner. There are many forums that

talk about a specific alternative treatment, Salt-C, Rifing, Buhner herbs, MMS,

etc. I, personally, am doing herbs and supplements. Its best to look into

the different options and decide what fits your personality, budget, etc. I

am not going to say one method works better than the others because I think a

certain method works in varying degrees with the person using it and how

they use it. Some people prefer to do the medical route and even fly to LLMD's

to get good treatment. My suggestion is research and pray and go with your

gut on what feels right for you. From your description of complaints, I would

start with a chiropractor if you can find the money for it. Not that it

would cure you, but it should definitely be a good start on your healing

journey.

Heidi N