Re: Long term late stage neuro LD etc

[Guest guest]

Helen,

I'm so sorry it has been so rough in so many ways for you and your family.

There are people getting better on the Marshall Protocol who failed to get

well on IV and oral antibiotics.

If you want to look into it, see _http://marshallprotocol.com_

(http://marshallprotocol.com) and for my experiences and an overview for

laymen see

_http://members.aol.com/SynergyHN/transcript_

(http://members.aol.com/SynergyHN/transcript) and other links on that site (if

you have trouble with a link, try

it again a few seconds later). Of course, it is also much less expensive than

IV antibiotics.

Joyce

In a message dated 4/19/2007 3:03:04 A.M. Pacific Daylight Time,

writes:

_Long term late stage neuro LD etc _

( /message/74748;_ylc=X3oDMTJvcmxuaWMxBF9TA\

zk3MzU5NzE1BGdycElkAzczODQEZ3Jwc3BJZAMx

NzA1MTA2MDEyBG1zZ0lkAzc0NzQ4BHNlYwNkbXNnBHNsawN2bXNnBHN0aW1lAzExNzY5NzY5MTk-)

Posted by: " vibranthelen " _vibranthelen@... _

(mailto:vibranthelen@...?Subject=

Re:Long%20term%20late%20stage%20neuro%20LD%20etc)

_vibranthelen _ (vibranthelen)

Wed Apr 18, 2007 6:55 pm (PST)

Hi All,

I've been fighting LD since 1987 but not dx until 1993. I know I am

one of the sickest patients of a well known LLMD. Now after being tx

with the " kitchen sink " for a year for WA-1 babesia and continuing LD

etc, etc I am on quinine and clindamycin. I want to tell you my story-

it is hard to believe even for sick people. I want to hear from any

who have tried this tx. I'm on day 2 and only doing 1 capsule each 3x

a day instead of 2 caps of each 3x a day to see if I can tolerate it

any better. I have had a daily fever for almost 5 years, drenching

sweats, severe nerve pain (forever). After my severe relapse

following a remission of only 1 year and 1/2 I was bedridden until

they dx me with the WA-1. I had babesia microti long ago. I got about

40% better but was at a standstill. I feel like this is my last hope.

I have been through hell. Our 2 daughters and husband all have been

on IV, I have been on it many times, did HBOT. My husband was

downsized almost 5 years ago from corporate America after 28 years of

hard work in the plastics industry. He is 58 this week. He works 24/7

trying to make a go in his own limo business. We lost our house,

declared bankruptcy, have gone through all our life savings due to

astronomical medical bills and job loss. I was an OR RN long ago. We

are late paying rent, etc, etc, etc. So scary. I am so sick. Don't

know why God doesn't just take me to heaven. I am such a burden to

all. God bless all of you.

Love,

Helen

************************************** See what's free at http://www.aol.com.

[Guest guest]

Hi Helen, I'm sorry to hear you still feel so ill.

Did you ever try antifungals? After all those abx and antimalarials

you might have major fungus issues.

And did you ever try antivirals? Those would be valtrex, or valcyte.

Another option, just to help your immune system, is IVIG.

>

> Hi All,

> I've been fighting LD since 1987 but not dx until 1993. I know I am

> one of the sickest patients of a well known LLMD. Now after being tx

> with the " kitchen sink " for a year for WA-1 babesia and continuing LD

> etc, etc I am on quinine and clindamycin. I want to tell you my story-

> it is hard to believe even for sick people. I want to hear from any

> who have tried this tx. I'm on day 2 and only doing 1 capsule each 3x

> a day instead of 2 caps of each 3x a day to see if I can tolerate it

> any better. I have had a daily fever for almost 5 years, drenching

> sweats, severe nerve pain (forever). After my severe relapse

> following a remission of only 1 year and 1/2 I was bedridden until

> they dx me with the WA-1. I had babesia microti long ago. I got about

> 40% better but was at a standstill. I feel like this is my last hope.

> I have been through hell. Our 2 daughters and husband all have been

> on IV, I have been on it many times, did HBOT. My husband was

> downsized almost 5 years ago from corporate America after 28 years of

> hard work in the plastics industry. He is 58 this week. He works 24/7

> trying to make a go in his own limo business. We lost our house,

> declared bankruptcy, have gone through all our life savings due to

> astronomical medical bills and job loss. I was an OR RN long ago. We

> are late paying rent, etc, etc, etc. So scary. I am so sick. Don't

> know why God doesn't just take me to heaven. I am such a burden to

> all. God bless all of you.

> Love,

> Helen

>

[Guest guest]

I feel for you and your family, Helen. But there is hope... I was no

where near as sick as you, but sick enough to have to stop my " life. "

I couldn't do normal things or work in my home jewelry business (very

distressing for us " creative types " )... thankfully my husband is the

primary breadwinner & it didn't hit us that hard (the medical bills

did, though!). I'm not pushing this way of treatment, but suggesting

it because it worked for me & I listened as others in my

teleconference group got results as well... check out

www.lymefree.com. , the founder, is very compassionate (if a bit

scattered, but in a good way)... if you don't see a response within

three sessions, he will refund your money. I feel confident in saying

that if you are in the 90% of people who respond, you will get

better. I feel that I am 100% cured of this horrible, offensive &

disgusting disease & I did it with his help. I also want to add that

I feel that part of what also helped me is a drastic change in my

attitude toward the disease & how I saw myself. Let me explain...

about halfway through my " bad " episode (which lasted a little over a

year) I realized that " hey, I am a healthy person who has become

sick " ... this was key, because I had fallen into a trap of feeling

like a sick person... I had become a sick person, not a healthy

person fighting a sickness. The realization that this was what I saw

as my persona was shocking! I truly feel that if I hadn't adjusted my

perspective, I would still be sick today... we are all healthy people

struggling to fight an invasion of our physical bodies & we can fight

this! We are the culmination of years & years (millennia even)of

evolution, we are not the new model on the street... our bodies are

toughened, time tested & able to fight disease... we just have to

help it out. I believe that my adjusted perspective allowed me to

bolster my body's defenses & my intent to fight & become the healthy

person that I knew I was helped me along much faster than would

otherwise have happened. This is not to say that it's that easy, when

you feel so rotten & physically & mentally downtrodden, it is not a

simple task to just turn on the " happy & healthy " switch... it takes

effort (it gets easier with practice, though), but I saw this as just

as important to my health as taking the medications at the right

times and doing exercise as much as I could... the effort pays off in

the long run... I feel better than I have in years! I am a much more

positive person & I feel more in balance with my body than ever. I

hope this helps you in some small way to have some hope that this is

something that can be overcome... you can do it!

Tiff

>

> Hi All,

> I've been fighting LD since 1987 but not dx until 1993. I know I am

> one of the sickest patients of a well known LLMD. Now after being

tx

> with the " kitchen sink " for a year for WA-1 babesia and continuing

LD

> etc, etc I am on quinine and clindamycin. I want to tell you my

story-

> it is hard to believe even for sick people. I want to hear from any

> who have tried this tx. I'm on day 2 and only doing 1 capsule each

3x

> a day instead of 2 caps of each 3x a day to see if I can tolerate

it

> any better. I have had a daily fever for almost 5 years, drenching

> sweats, severe nerve pain (forever). After my severe relapse

> following a remission of only 1 year and 1/2 I was bedridden until

> they dx me with the WA-1. I had babesia microti long ago. I got

about

> 40% better but was at a standstill. I feel like this is my last

hope.

> I have been through hell. Our 2 daughters and husband all have been

> on IV, I have been on it many times, did HBOT. My husband was

> downsized almost 5 years ago from corporate America after 28 years

of

> hard work in the plastics industry. He is 58 this week. He works

24/7

> trying to make a go in his own limo business. We lost our house,

> declared bankruptcy, have gone through all our life savings due to

> astronomical medical bills and job loss. I was an OR RN long ago.

We

> are late paying rent, etc, etc, etc. So scary. I am so sick. Don't

> know why God doesn't just take me to heaven. I am such a burden to

> all. God bless all of you.

> Love,

> Helen

>

[Guest guest]

helen, i am so sorry, i can kind of understand what you are going through, my

husband has been sick with chronic neurological lyme for they think at least 10

years that they know of..and after almost dying last year of meningittis and

walking with a cane for a long time (hes 32 now) my mom got an epiphany (if

thats how you spell it) and told me he had lyme, after alot of fighting and

doctors (they thought he had ms) . he was finally diagnosed.. he was on 2

antibiotics for 5 months and then on iv antibiotics for 2 months, felt better

for about a month, stopped using the cane, but now is feeling really sick again

and has only been off the iv for a month or 2. he feels he is giong to need his

cane again and sees people in wheelchairs and says thats going to be me.we dont

have the money to pay for the iv, its going to be 12,000.00 for this second

round and our insurance wont pay for it, our house is also in foreclosure. i

work full time to try to support the family, but

having to take time off when my husband is too sick to take our 2 young boys to

school or take him to appointments is affecting my job not to mention the

stress on me is also affecting my job. so i can relate to your situation. and

all i can say is fight to live for your kids. i know you feel like you live in

hell, but maybe there is hope out there, and hang on to that as long as you can,

thats what my husband is trying to do, i know its hard, i see him in agony every

day. i am so sorry for you but keep praying for god to help you, i know the

power of prayer has helped us. god bless and we all need to keep each other in

our prayers.

vibranthelen <vibranthelen@...> wrote: Hi All,

I've been fighting LD since 1987 but not dx until 1993. I know I am

one of the sickest patients of a well known LLMD. Now after being tx

with the " kitchen sink " for a year for WA-1 babesia and continuing LD

etc, etc I am on quinine and clindamycin. I want to tell you my story-

it is hard to believe even for sick people. I want to hear from any

who have tried this tx. I'm on day 2 and only doing 1 capsule each 3x

a day instead of 2 caps of each 3x a day to see if I can tolerate it

any better. I have had a daily fever for almost 5 years, drenching

sweats, severe nerve pain (forever). After my severe relapse

following a remission of only 1 year and 1/2 I was bedridden until

they dx me with the WA-1. I had babesia microti long ago. I got about

40% better but was at a standstill. I feel like this is my last hope.

I have been through hell. Our 2 daughters and husband all have been

on IV, I have been on it many times, did HBOT. My husband was

downsized almost 5 years ago from corporate America after 28 years of

hard work in the plastics industry. He is 58 this week. He works 24/7

trying to make a go in his own limo business. We lost our house,

declared bankruptcy, have gone through all our life savings due to

astronomical medical bills and job loss. I was an OR RN long ago. We

are late paying rent, etc, etc, etc. So scary. I am so sick. Don't

know why God doesn't just take me to heaven. I am such a burden to

all. God bless all of you.

Love,

Helen

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

Ahhh...imagining that irresistible " new car " smell?

Check outnew cars at Autos.

[Guest guest]

Thank you, Tiff. I think you hit the nail on the head:

" hey, I am a healthy person who has become sick "

It's hard when people look at me and make comments about me being a

hypochondriac. If I were a hypochondriac, then why didn't I go to

the doctor when I removed the deer ticks and saw the rash? Or when I

felt like I was coming down with the flu shortly after? Or when I

had headaches so severe, I threw up and could hardly drive home from

work in the middle of the day?

The reason I had ticks on me was because I was a healthy, active

woman who enjoyed hiking in forests. I want to be healthy and active

again.

Now I realize that I should have gone to the doctor's; I should have

saved the ticks; I should have taken photos of the rashes.... I wish

I knew then what I know now. Does knowledge make me a

hypochondriac? I had a doctor tell me I " read too much. " I guess

they want me to just sit down and shut up....But I can't.

Joining this and other Lyme groups has helped me so much. I feel

empowered now. Together we can make a difference. Sending emails to

the congressmen in MD and seeing that bill not pass was wonderful.

It has renewed my hope in humanity. Now they are starting a Lyme

Research Center at Columbia Univ. Maybe we are seeing a turning

point in the status of Lyme Disease.

Be well all you healthy people who have become sick,

Connie

[Guest guest]

Hello Helen,

I really feel for you in what you have been through with this disease

and what you're facing right now. Oh my. The pain and hell and

devastation that chronic Lyme can reduce one's life to is beyond

words. I have been sick since 1987 as well, and just this past fall

found out that it has been Lyme Disease all this time.

Like Tiff, I wanted to tell you that I have found help and real, true

hope of healing from this disease through IRT, after searching and

trying many things to no avail. I don't know if you're willing to

look into something kinda different, but this program is definitely

worth it. If nothing else, at least check the site out and call to get

the free information packet and watch the DVD. It's so good and

interesting. I myself am getting better with IRT, and so many others

have already gotten better and are actually 'living' again without any

symptoms of Lyme Disease.

I really love your user name, by the way. Don't give up, my vibrant

friend!! There is hope, and God will hear your prayers. Feel free to

email me off list if you like, if you just want to talk or whatever.

Also, check out another Lyme forum called Lymetopics sometime. I am a

member there as well and it's great having the extra connection with

even more lymies .

Love and blessings,

Becky

>

> Hi All,

> I've been fighting LD since 1987 but not dx until 1993. I know I am

> one of the sickest patients of a well known LLMD. Now after being tx

> with the " kitchen sink " for a year for WA-1 babesia and continuing LD

> etc, etc I am on quinine and clindamycin. I want to tell you my story-

> it is hard to believe even for sick people. I want to hear from any

> who have tried this tx. I'm on day 2 and only doing 1 capsule each 3x

> a day instead of 2 caps of each 3x a day to see if I can tolerate it

> any better. I have had a daily fever for almost 5 years, drenching

> sweats, severe nerve pain (forever). After my severe relapse

> following a remission of only 1 year and 1/2 I was bedridden until

> they dx me with the WA-1. I had babesia microti long ago. I got about

> 40% better but was at a standstill. I feel like this is my last hope.

> I have been through hell. Our 2 daughters and husband all have been

> on IV, I have been on it many times, did HBOT. My husband was

> downsized almost 5 years ago from corporate America after 28 years of

> hard work in the plastics industry. He is 58 this week. He works 24/7

> trying to make a go in his own limo business. We lost our house,

> declared bankruptcy, have gone through all our life savings due to

> astronomical medical bills and job loss. I was an OR RN long ago. We

> are late paying rent, etc, etc, etc. So scary. I am so sick. Don't

> know why God doesn't just take me to heaven. I am such a burden to

> all. God bless all of you.

> Love,

> Helen

>

[Guest guest]

I am so sorry to hear the troubles that you have had , Your story sounds a

lot like my husbands.

When I was on this sight there was a link for Arizona Lyme group. On there

was a list of help for Pharmaceutical Links. Maybe this would help you.

http://www.infuserveamerica.com/

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

Ahhh...imagining that irresistible " new car " smell?

Check outnew cars at Autos.

[Guest guest]

Nicely said Connie and you can never read enough. Knowledge is power.

Dagmar

************************************** See what's free at http://www.aol.com.

[Guest guest]

Helen,

Your story is NOT hard to believe, I feel for you, I know it's all too real. I

had Lyme and my

2 kids also. For 8 years we tried almost everything under the sun. The thing

that helped

significantly was an IV treatment, which was Argentyn Silver, Glutathione and a

bunch of

vitamins including C. I think the Argentyn Silver was the magic bullet. I feel

I'm 90% better

and my daughter who was the worst off, was symptom free for 9 months. She has

recently

started having some dizzyness again so we will do another course of it. It was

expensive

but worth it. The place that administered it did have a scholarship fund I

believe. You

gotta do what you gotta do. I'll be praying for you.

Ruth

>

>

> Helen,

> I'm so sorry it has been so rough in so many ways for you and your family.

>

> There are people getting better on the Marshall Protocol who failed to get

> well on IV and oral antibiotics.

> If you want to look into it, see _http://marshallprotocol.com_

> (http://marshallprotocol.com) and for my experiences and an overview for

laymen see

> _http://members.aol.com/SynergyHN/transcript_

> (http://members.aol.com/SynergyHN/transcript) and other links on that site

(if you

have trouble with a link, try

> it again a few seconds later). Of course, it is also much less expensive

than

> IV antibiotics.

>

> Joyce

>

[Guest guest]

where is this place that administers this?? my husband is very sick and went

through one round of antibiotics and is getting worse again...

rthbarwick <rthbarwick@...> wrote: Helen,

Your story is NOT hard to believe, I feel for you, I know it's all too real. I

had Lyme and my

2 kids also. For 8 years we tried almost everything under the sun. The thing

that helped

significantly was an IV treatment, which was Argentyn Silver, Glutathione and a

bunch of

vitamins including C. I think the Argentyn Silver was the magic bullet. I feel

I'm 90% better

and my daughter who was the worst off, was symptom free for 9 months. She has

recently

started having some dizzyness again so we will do another course of it. It was

expensive

but worth it. The place that administered it did have a scholarship fund I

believe. You

gotta do what you gotta do. I'll be praying for you.

Ruth

[Guest guest]

Helen,

> Your story is NOT hard to believe, I feel for you, I know it's all

too real. I had Lyme and my

> 2 kids also. For 8 years we tried almost everything under the sun.

The thing that helped

> significantly was an IV treatment, which was Argentyn Silver,

Glutathione and a bunch of

> vitamins including C. I think the Argentyn Silver was the magic

bullet. I feel I'm 90% better

> and my daughter who was the worst off, was symptom free for 9

months. She has recently

> started having some dizzyness again so we will do another course of

it. It was expensive

> but worth it. The place that administered it did have a scholarship

fund I believe. You

> gotta do what you gotta do. I'll be praying for you.

> Ruth

>What about someone is on disability and is extremely sick and can't

take antibiotics but can't afford alternative therapy - are we

destined to live this way until our heart gives out??

[Guest guest]

i completely understand wondering if you have to live this way? i wonder if my

husband will. where is this place, we are in pa. he did a round of rocefin but

is feeling sick again.

patticharleston <lambshop61@...> wrote:

>

> where is this place that administers this?? my husband is very sick

and went through one round of antibiotics and is getting worse

again...

[Guest guest]

Oh Helen,

God has a very special purpose for you, believe me! I have had Lyme

disease for 20 years now and I did fairly well for the first fifteen

however, the last five have just about killed me and I refuse to go

without a fight because I know God is keeping me here for a reason.

I have not had the financial burdens that you have had because, by

the grace of God, my husband does not have lyme. I always worry

about my son though, because he and I lived in Austin, Texas and that

is where I was infected. He has not shown signs however, we all know

that Lyme can remain dorment for a long time just to rear it's ugly

head years down the road! So, I pray and leave it in God's loving

hands. You are not a burden Sweetie, but a rock for your children

and husband even if they do not always show it, they need you very

much! My husband has a hard time believing how bad Lyme disease is

but, he knows that I am very sick and still stands beside me because

of our faith in God. God will take care of you, not always in the

way we think he should but, he does! I will keep you and your family

in my prayers and pray that God gives you the spiritual, financial

and medical help that you all need!!!

God Bless!!

>

> Hi All,

> I've been fighting LD since 1987 but not dx until 1993. I know I am

> one of the sickest patients of a well known LLMD. Now after being

tx

> with the " kitchen sink " for a year for WA-1 babesia and continuing

LD

> etc, etc I am on quinine and clindamycin. I want to tell you my

story-

> it is hard to believe even for sick people. I want to hear from any

> who have tried this tx. I'm on day 2 and only doing 1 capsule each

3x

> a day instead of 2 caps of each 3x a day to see if I can tolerate

it

> any better. I have had a daily fever for almost 5 years, drenching

> sweats, severe nerve pain (forever). After my severe relapse

> following a remission of only 1 year and 1/2 I was bedridden until

> they dx me with the WA-1. I had babesia microti long ago. I got

about

> 40% better but was at a standstill. I feel like this is my last

hope.

> I have been through hell. Our 2 daughters and husband all have been

> on IV, I have been on it many times, did HBOT. My husband was

> downsized almost 5 years ago from corporate America after 28 years

of

> hard work in the plastics industry. He is 58 this week. He works

24/7

> trying to make a go in his own limo business. We lost our house,

> declared bankruptcy, have gone through all our life savings due to

> astronomical medical bills and job loss. I was an OR RN long ago.

We

> are late paying rent, etc, etc, etc. So scary. I am so sick. Don't

> know why God doesn't just take me to heaven. I am such a burden to

> all. God bless all of you.

> Love,

> Helen

>