New Member

[Guest guest]

Hi and Welcome! What did cranial Tech say? Did they give you a severity level? Get a referral (if needed) to a Cranial-Facial specialist. That is who gave us our RX for the band. Go in armed w/ the Cranial Tech info - Hopefully that will help!

Our dd has mild/mod plagio - but you can see it in her face so we wanted to band. My philosophy is better to do all you can now and at worse case see no results than to do nothing and wish you had when you could have.

This is a great place to get wonderful support and info from other parents who've been there! Feel free to ask any question!

JEN

Mommy to 4...and 1 more!!!!

Luli - Tort/Plagio - Hanger Band - CA

"Luli"

www.babiesonline.com/babies/j/jens5th/

[Guest guest]

Hi Maura, yes there is hope and some positive signs in your situation. I had hepatitis for over 20 years and was treated in the year 2000. I have been undetectable since 6 mos into the treatment. I had very high viral counts, but I was lucky to have little liver damage. Younger people, historically, have responded better to the current therapy than we old dogs. The treatment saps your energy, and I suppose I could have handled that much better at 17 than 47. Technology has not been able to "prove" a cure, there is not enough long-term data, and the virus is so small, there is a threshhold number it takes to detect. In other words, even though I've tested undetectable, there could still be a small amount of the

virus present and they wouldn't be able to detect it. After 5 years, I like to think it's gone, though I will have to keep a watch on my physical results for out of wac liver enzymes. Good luck, keep us posted. -dz-

[ ] New Member

Hi everyone. I am looking for some words of hope. My 17 year old nephew has really gotten a raw deal in life- drug addicted mother and no father ( never met him). Now it looks as though he is showing signs of HepC which my sister has. She is mentally disabled after many years of drug addiction and Methodone maintenance. He is the sweetest looking boy with white blond hait and sparkling blue eyes- my heart is crushed- he does not deserve this. Doctors think that he got it before birth. He is so healthy looking that I cannot process that he has this disease. Will he have a full and normal life.He will be seeing a specialist soon. Are there any cures on the horizon? Thank you for reading this! Maura

[Guest guest]

In a message dated 9/26/2006 9:12:11 AM Eastern Standard Time, dhz920@... writes:

In other words, even though I've tested undetectable, there could still be a small amount of the virus present and they wouldn't be able to detect it. After 5 years, I like to think it's gone, though I will have to keep a watch on my physical results for out of wac liver enzymes. Good luck, keep us posted. -dz-

Thank you for the words of encouragement dz. I hope that you remain free from this virus! I am worried about how my nephew will handle this mentally. How will he ever have a serious girlfriend? I hope that there will be a cure in his future.

Maura

[Guest guest]

Hello,,((I am worried about how my nephew will handle this mentally. How will he ever have a serious girlfriend?)) I always understood Hep.C as not being able to contract it by Serious Sexual Relations.Thank YouJMLKJ@... wrote: In a message dated 9/26/2006 9:12:11 AM Eastern Standard Time, dhz920sbcglobal (DOT) net writes: In other words, even though I've tested undetectable, there could still be a

small amount of the virus present and they wouldn't be able to detect it. After 5 years, I like to think it's gone, though I will have to keep a watch on my physical results for out of wac liver enzymes. Good luck, keep us posted. -dz- Thank you for the words of encouragement dz. I hope that you remain free from this virus! I am worried about how my nephew will handle this mentally. How will he ever have a serious girlfriend? I hope that there will be a cure in his future.

Maura

All-new - Fire up a more powerful email and get things done faster.

[Guest guest]

There are alot of us who have spouses that have never contacted Hep C from us..If I am not mistaken it is like 1 in 500 chances of anyone contactin git like that..As far as a serious relationship it should be no problem for him..I hope this helped.. FFFF, JanElite Enterprise <wildckaatt@...> wrote: Hello,,((I am worried about how my nephew will handle this mentally. How will he ever have a serious girlfriend?)) I always understood Hep.C as not

being able to contract it by Serious Sexual Relations.Thank YouJMLKJ@... wrote: In a message dated 9/26/2006 9:12:11 AM Eastern Standard Time, dhz920sbcglobal (DOT) net writes: In other words, even though I've tested undetectable, there could still be a small amount of the virus present and they wouldn't be able to detect it. After 5 years, I like to think it's gone, though I will have to keep a watch on my physical results for out of wac liver enzymes. Good luck, keep us posted. -dz- Thank you for the words of encouragement dz. I hope that you remain free from this virus! I am worried about how my nephew will handle this mentally. How will he ever have a

serious girlfriend? I hope that there will be a cure in his future. Maura All-new - Fire up a more powerful email and get things done faster. Jan

Get your own web address for just $1.99/1st yr. We'll help. Small Business.

[Guest guest]

It is rarely transmitted through sexual contact. Neither my ex-wife or my current wife have gotten the virus. It needs blood to blood contact, most cases are from blood transfusions, iv drug use, or unsafe inoculations. Many veterans got the virus when getting mass inoculations prior to going to Vietnam. There are people who cannot pin down any of these obvious events causing the disease. -dz- JMLKJ@... wrote: In a message dated 9/26/2006 9:12:11 AM Eastern Standard Time, dhz920sbcglobal (DOT) net

writes: In other words, even though I've tested undetectable, there could still be a small amount of the virus present and they wouldn't be able to detect it. After 5 years, I like to think it's gone, though I will have to keep a watch on my physical results for out of wac liver enzymes. Good luck, keep us posted. -dz- Thank you for the words of encouragement dz. I hope that you remain free from this virus! I am worried about how my nephew will handle this mentally. How will he ever have a serious girlfriend? I hope that there will be a cure in his future. Maura

[Guest guest]

In a message dated 9/28/2006 10:11:43 AM Eastern Standard Time, dhz920@... writes:

It is rarely transmitted through sexual contact

Thank you to everyone who responded. You are giving me hope and helping me to contain undue worry when it comes to my nephew. His mother was a heroin addict (started when she was a nurse in the army during the 70's). She has spent many years on methodone and is still on it at age 52. He does not have a father that he has met (from what I understand that's a good thing). He was really born with the cards stacked against him. He is currently in a court ordered facility (big surprise_not) for problems with truancy and alcohol and taking my father's car (his grandfather) etc. It was this facility that tested him and said that he is showing signs of Hep C which his mother has. They say that he was probably born with it.

He is in a court ordered facility 6 hours from Long Island where we live- he is way upstate. I am going to visit him on Saturday. With all his problems, he is really a great kid and doesn't deserve the life he got.

Thank you to everyone here for giving me hope that I can pass on to him!!!!

Maura

[Guest guest]

Hi Maura, I am Jan and have a step daughter also in a facility like that for similiar reasons..One difference..She is a TROUBLED child..She has got serious issues that only meds I think would help..I don't know..All I do know is when she was here on a visit and asked for my hair spray which I never got backcause the can was empty..I found out later she had been huffing it right hhere in my house..Ok her dad and I called the workers in Tenn. and told them all of this..Supposedly now she is going back to her mother who turnedo ver custody to the state of Tenn and was irresponsible enoug hto let her date a 22 year old man and she was 13 at the time..So what dopes this say about the state? Not very much in my book..We were willing to hae herlive here till we kjept finding out door un locked in the mornings and she was very rude with her language and pitching fits..Your nephew on the other hand as you say does seem like a good kid and just needs love..Show him

all you can and hopefully his life will change to the better and he can get help especially beings he is so young with the Hep if he does have it..We are here to listen not just about Hep but with other issues youcare to ven tabout..Lord knows this gorup has listened to mine!! FFFF, JanJMLKJ@... wrote: In a message dated 9/28/2006 10:11:43 AM Eastern Standard Time, dhz920sbcglobal (DOT) net writes: It is rarely transmitted through sexual contact Thank you to everyone who responded. You are giving me hope and helping me to contain undue worry when it comes to my nephew. His mother was a heroin addict (started when she was a nurse in the army during the 70's). She has spent many years on methodone and is still on it at age 52. He does not have a father that he has met (from what I understand that's a good thing). He was really born with the cards stacked against him. He is currently in a court ordered facility (big surprise_not) for problems with truancy and alcohol and taking my father's car (his grandfather) etc. It was this facility that tested him and said that he is showing signs of Hep C which his mother has. They say that he was probably born with it. He is in a court ordered facility 6 hours from Long Island where we live- he is way upstate. I am going to visit

him on Saturday. With all his problems, he is really a great kid and doesn't deserve the life he got. Thank you to everyone here for giving me hope that I can pass on to him!!!! Maura Jan

Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less.

[Guest guest]

Maura if you want someone very good with pedeatric or teenage hcv get in touch with Murrison at Beatinhep@... in your subject on the e mail mention my name, eric and the 17 yr old , Shes the best with young ones . She is basically retired from the hcv thing but always helps the young and no one knows more then her when it comes to the young and their special problems . I already mentioned him to her in a small way . Dont forget to do what i said in your subject title ,put my name 1st or she could

delete it . Let me know what happins its possible i may have to get her myself but i believe you will be ok.

[Guest guest]

Thats pretty true but if you want to be honist with your partner as you should that scares many away ,even though the risk is slight you should still inform , the disease is a pain in the ass to get rid of but you can bring your odds way up by doing treatment right . That means not blowing your 1st shot at treatment ,after each failed treatment the virus gains more drug restiance makeing your chance of a cure harder . Their are things most doctors dont know to bring your odds of a cure way past the 45,50% mark. I was considered a non responder and have been hcv neg for 4 years .Thats cause i worked in a level 3 research lab with hcv aids and many other killers and knew how to intensify the meds action very easy and how to protect my treatment time in case of a failed treatment i wouldnt have to start from ground 0

again. The first treatment time is the most important and your best shot. Ask and i will help put him on thr road to ger thr cure,and it is curable many studies have pointed this out. its not just remission . Get me his lab work genotype , viral load , liver profile biopsy result and we will see how to approach this disease ,best medication to use ect ect .

[Guest guest]

Welcome Tamra!!! You will see that this board is a wonderful and safe place with incredible parents who have so much knowledge and real experience w/ plagio!

If you do a search w/ specific keywords about what you are looking for - at the main message board - you may find alot of info before anyone gets back to you!

I can't help w/ the painting - we didn't paint.

I'm glad is doing well in his band - just keep an eye out for redness that doesn't go away after an hour - call your ortho if you see that! They can adjust the band to keep for having skin break down.

HTH! And Welcome!

JEN

Mommy to 4...and 1 more!!!!

Luli - Tort/Plagio - Hanger Band - CA

"Luli"

www.babiesonline.com/babies/j/jens5th/

[Guest guest]

Hi Tamra,

Welcome to the group. my daughter has a starband for brachy (flat in

back) and has received a lot of correction so far. we are going to

wear it a few more weeks since it still fits but she's basically done.

My daughter was younger, but I've seen a lot of posts about good

results after a year.

we got a pattern on our helmet (bunnies) but I am kind of tired of it,

so I sometimes put stickers too. it is a lot easier than painting.

they last about a week before they look messy. then I change them.

I hope you see good results soon. My daughter learned to crawl with

her band on and still falls over sometimes, but I don't think its the

band in her case ;-) she's also learning to walk, so the band helps a

lot (fewer bumps and bruised).

I hope you'll see some progress soon.

-christine

mom to sydney/ 9 mo/ starband 5-31-06

>

> Hi, I'm a 1st time mommy to a 14 month old. He was born 7 weeks

> premature. My husband & I noticed the plagiocephaly when he was 4-5

> months old. I kept on his pediatricians about it & they told me to

> reposition & it will round out on it's own. His head isn't real bad

> & it has gotten somewhat better, but we was still concerned. Finally

> a pediatrician in the Preemie clinic saw him & he agreed w/ me, that

> he needed a helmet. This was 2 months ago. We had to switch

> insurances once he was a year old, so we just now got his band. We

> was going to get a DOC band, but they are out of network, so he has

> a STARband. We went ahead w/ casting & measuring at the 1st visit,

> as we didn't want to wait on insurance, especially since the Dynamic

> O & P aren't sure if my insurance will pay. We took III today

> & got his helmet. He is doing pretty good w/ it. He's not fussy or

> pitching a fit. He has fell over twice while crawling. Did ya'lls

> babies do this? What paint should we use to paint his band? We

> ordered the camo 1, but it doesn't look like the picture did. Is

> there any babies 1 year old or older that got STARbands )DOC Bands

> too), how was the outcomes? I'm praying & hoping this works since I

> want his head to round out & we just spent $3000.00 on this helmet.

> I'm so glad there is a place to talk about this, as I don't know a

> lot on Plagiocephaly & cranial helmets.

>

> Thanks,

> Tamra

> III's Mommy

>

[Guest guest]

Hi Kelli,

Your situation sounds pretty similar to what we went through when my daughter was that age. Since you're dealing with both tort and plagio and can already see that his ears aren't aligned and head is asymmetrical it sounds like he'll probably need a helmet. The good thing is that even if you decide to wait and see for another month or two (and keep up with that PT!) he'll still be young enough that hopefully he won't need the helmet for very long. My daughter was 8 months old when she started wearing her helmet--she only ended up needing it for 10 weeks and we were very pleased with the amount of correction that we saw. The important thing is to keep up the stretches at home-- even if his head shape doesn't improve that will help keep it from getting worse. Also, if he has a tilt (as most tort babies do) you might want to ask your PT about starting to use a TOT collar(or kinesiotaping) once he's big enough (probably around 5-6 months of age) because correcting the tilt will also help you keep the plagio from getting worse. Best of luck to you!

Alison

mom to Leila, born 9/25/05 (tort/plagio, STARband grad)Boynton Beach, FL

Plagiocephaly From: kgranade@...Date: Wed, 4 Oct 2006 16:07:53 +0000Subject: New Member

Hello all:I just found you all today and am so thankful you are here! My son is 4 months old and has torticollis as well as plagio. We have been going to physical therapy for just over a month, and the torticollis is really improving, but I am concerned about his head shape. Last week, our pediatrician said that he thought his head would round out on its own as we continue the PT and he spends more time up off his head. However, he has somewhat of a bulge behind his ear on the non-flattened side, and his ears don't exactly line up. If we were just dealing with flatness, then I'd be more optimistic, but I'm not sure the bulging area will be remedied simply by time and repositioning strategies. Since he's 4 months old already, I don't want to wait too long before we intervene if it's necessary. Do any of you have experience with the bulging area resolving itself, or will that nearly always require band/helmet intervention?Thanks so much,Kelli & Try the new Live Search today! Check it out!

[Guest guest]

Hi Mark, Just want to welcome you. I am on my way out so not time to respond to

your ?. I would ask Buhner about cancer and herb.

Blessings to your healing Joyce

Mark Scarrott <water_parsnip@...> wrote:

Hi guys. I've just signed up to this site as I have recently started

herbal remedies for Lyme after reading Buhners book.. I was on

the euro lyme website but no one really wants to talk about herbs on

there. I've had Lyme for over a year now and I've been on Cats claw

complex, andrographis complex, and garlic for about three weeks. After

the first two weeks the symptoms started to fade, now some of them

have magnified. I am assuming this is a herx, would anyone care to

comment? Also my herbalist was reluctant to perscribe knot as I am

also recovering from cancer (yes, I know - bad luck isn't even in the

race). Is what I'm taking besides knotweed a sufficient start?

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

All-new - Fire up a more powerful email and get things done faster.

[Guest guest]

Mark, glad you joined!

I feel what you describe is a herx, specially if you get better after a

few days. For me, I felt the pattern of increase of pain (arthritis)

then decrease after a few hours, to get again an increase after the new

dose. I now don't herx like that, really, I get chills after herbs.

Sideways, I got incredible improvements on sleep and other lyme

symptoms, without noticing a 'herx' there (no magnification of these

symptoms).

I just heard a radio interview with Dr. K. who said that herbs like

andrographis, smilax (sarsaparilla) and cats claw work as well as

antibiotics to kill spirochettes (interview is in his 'new' site, on

the neurotoxin part).

Hope others will come with more answers for you!

Selma

>

> Hi guys. I've just signed up to this site as I have recently started

> herbal remedies for Lyme after reading Buhners book.. I was

on

> the euro lyme website but no one really wants to talk about herbs on

> there. I've had Lyme for over a year now and I've been on Cats claw

> complex, andrographis complex, and garlic for about three weeks.

After

> the first two weeks the symptoms started to fade, now some of them

> have magnified. I am assuming this is a herx, would anyone care to

> comment? Also my herbalist was reluctant to perscribe knot as I am

> also recovering from cancer (yes, I know - bad luck isn't even in the

> race). Is what I'm taking besides knotweed a sufficient start?

>

[Guest guest]

Hi Selma, yes its strange I had a massive bout of fatigue earlier

this evening but now it's gone again. Definately a herx I think.

What do you detox with and how often?

-- In , " selmanaka " <hardynaka@...>

wrote:

>

> Mark, glad you joined!

>

> I feel what you describe is a herx, specially if you get better

after a

> few days. For me, I felt the pattern of increase of pain

(arthritis)

> then decrease after a few hours, to get again an increase after

the new

> dose. I now don't herx like that, really, I get chills after herbs.

>

> Sideways, I got incredible improvements on sleep and other lyme

> symptoms, without noticing a 'herx' there (no magnification of

these

> symptoms).

>

> I just heard a radio interview with Dr. K. who said that herbs

like

> andrographis, smilax (sarsaparilla) and cats claw work as well as

> antibiotics to kill spirochettes (interview is in his 'new' site,

on

> the neurotoxin part).

>

> Hope others will come with more answers for you!

>

> Selma

>

>

[Guest guest]

Maura Did did you get evelyne ? send to my mail box dont use the gp it seems pretty dead. I have some good groups you can visit give me an e mail

[Guest guest]

Welcome Weetie. Glad you are here. It's a great group full of knowledge

and compassion. Glad the Remicaid is helping you and may you discover

even more to guide you along. -Betz

[Guest guest]

Thank you...I am rnjoying the posts and am learning quite a bit...like

I need to start eating healthier...lol...ok..I already knew that but

the more I hear it the harder it is to ignore...my next trip to the

grocery will be fruits and vegies (and ice cream) if it's in () it does

not count. I am very thankful for the remicade, however it is very

expensive. Medicare used to pay 100% but now requires that you pay

10%, which for me is 620.00 a month. That's alot. I have 1 more

treatment that I have the funds for and then I am not sure what I will

do. I have been on it for almost 5 years now. I missed 2 months...feb

and march because of finances and my psorasis came back and also my

right hand got very swollen and weak. My hips are screaming and it is

very hard to walk. As soon as I go for my IV I feel great when I am

about 1/2 done. I did Enbrel and it worked for a couple years. Now I

take methotrexate, remicade and medrol. I was off the medrol for 2

years but when I missed my remicade I had to go back on it. I would

much rather not take it because it makes me eat and bulks me up. I also

take Loritab and oxycontin...which I am not thrilled about. I have one

symptom that drives me nuts and wonder if anyone else has it or might

know the cause. Often my legs will feel as if they are about to

explode. Does that make sense...they just feel so full and tight and

it is impossible to ignore...forget sleeping. The pain meds help that

but of course I talke that " extra " pill to get it to stop and I know

that is not good. Things could be a lot worse....I am thankful I have

legs to hurt. I try to think of that when it is almost impossible to

walk to the mailbox Weetie

>

> Welcome Weetie. Glad you are here. It's a great group full of

knowledge

> and compassion. Glad the Remicaid is helping you and may you discover

> even more to guide you along. -Betz

>

[Guest guest]

From what I understand, if you contact your drug companies, they

often have grants available for their medications if you are in a

pickle. I just found out today I'm in one...apparently my job

canceled my health insurance with full knowledge that I was in the

hospital so I cannot get my medications or go to my follow-up appts.

I'm taking whatever action I need to of course but I'm in no shape

to do it. I guess I'll be calling attorney's tomorrow and the drug

companies too. Don't give up. Make some calls. We still have our

brains (on less foggier days...lol). This disease can only take our

will away from us if we let it. -Betz

[Editor's Note: Betz, also call the NYS Commissioner of Insurance. I don't

think they can cancel your insurance without a notice period. In addition, the

insurance company apparently kept approving your medications and hospital fees

so I think they know they cannot unilaterally pull the plug on you without

notice. Depending on how long you were covered, you might also qualify for

COBRA. Kathy F.]

>

> Thank you...I am rnjoying the posts and am learning quite a

bit...like

> I need to start eating healthier...lol...ok..I already knew that

but

> the more I hear it the harder it is to ignore...my next trip to the

> grocery will be fruits and vegies (and ice cream) if it's in () it

does

> not count. I am very thankful for the remicade, however it is very

> expensive. Medicare used to pay 100% but now requires that you

pay

> 10%, which for me is 620.00 a month. That's alot. I have 1 more

> treatment that I have the funds for and then I am not sure what I

will

> do. I have been on it for almost 5 years now. I missed 2

months...feb

> and march because of finances and my psorasis came back and also my

> right hand got very swollen and weak. My hips are screaming and

it is

> very hard to walk. As soon as I go for my IV I feel great when I

am

> about 1/2 done. I did Enbrel and it worked for a couple years.

Now I

> take methotrexate, remicade and medrol. I was off the medrol for 2

> years but when I missed my remicade I had to go back on it. I

would

> much rather not take it because it makes me eat and bulks me up. I

also

> take Loritab and oxycontin...which I am not thrilled about. I

have one

> symptom that drives me nuts and wonder if anyone else has it or

might

> know the cause. Often my legs will feel as if they are about to

> explode. Does that make sense...they just feel so full and tight

and

> it is impossible to ignore...forget sleeping. The pain meds help

that

> but of course I talke that " extra " pill to get it to stop and I

know

> that is not good. Things could be a lot worse....I am thankful I

have

> legs to hurt. I try to think of that when it is almost impossible

to

> walk to the mailbox Weetie

>

[Guest guest]

Betsy...that is just wron...I do not see how they could do

that...they better have a very good reason...and they cannot cancell

without a notice and grace period...even if you are not paying your

premiums for whatever reason they have to geive you a notice...I

believe 30 days. That is pretty low to do to someone in the hosp!!!!

I am goint to try and contact the company...I am alos going to

cintact Providence Hosp...my ins is Providence Medicare

Extra....Providence being my supplemental coverage. They are non

profit so I am going to see if there is some way they can pick up the

tab if I get my remacaide there instead of thrumy RA doc...it was his

idea...I can still see him...he is on the HMO...but his clinic is not

non profit like the hosp...plus it will be MUCH closer to my

home...when I started receiving it there was no set up to do it at

Providence...but now there is. I hope you can get things workied out

with your insurance....if there is anything you need...something I

can research for you or just an ear to bed...I am here. Weetie

>

> From what I understand, if you contact your drug companies, they

> often have grants available for their medications if you are in a

> pickle. I just found out today I'm in one...apparently my job

> canceled my health insurance with full knowledge that I was in the

> hospital so I cannot get my medications or go to my follow-up appts.

> I'm taking whatever action I need to of course but I'm in no shape

> to do it. I guess I'll be calling attorney's tomorrow and the drug

> companies too. Don't give up. Make some calls. We still have our

> brains (on less foggier days...lol). This disease can only take our

> will away from us if we let it. -Betz

>

> [Editor's Note: Betz, also call the NYS Commissioner of

Insurance. I don't think they can cancel your insurance without a

notice period. In addition, the insurance company apparently kept

approving your medications and hospital fees so I think they know

they cannot unilaterally pull the plug on you without notice.

Depending on how long you were covered, you might also qualify for

COBRA. Kathy F.]

[Guest guest]

Weetie - welcome aboard. I also have occasionally the problem of

having my lower legs feel like they will explode. They look only

mildly swollen at that time, but they feel so tight that you would

think they would split open (like my fingers do!) By the way, I don't

have P on my legs at all.

It lasts a few days, then it subsides. It's only happened about 3

times. Each time, the skin on my lower legs has peeled off

afterwards - just like if I had a mild sunburn. Not like the rest of

my P at all.

The last time it was happening it was time for my rheumy appointment.

It was mostly in my left leg. She could see the difference in size

and was worried about a possible blood clot. She did not have an

explanation for what causes it. I get the impression my rheumy is

accustomed to seeing inexplicable weird things happen with both her RA

and PA patients. She tries to make sure it's nothing serious and then

just accepts it and moves on with trying to get me into remission.

Let me know if you learn anything more definite about this.

best regards,

sherry z

[Editor's Note: Weight gain in the lower legs is often a sign that you are

retaining too much water and you may need a water pill or alteration in your

diet. Check with your doctor. Kathy F.]

>

I have one

> symptom that drives me nuts and wonder if anyone else has it or might

> know the cause. Often my legs will feel as if they are about to

> explode. Does that make sense...they just feel so full and tight and

> it is impossible to ignore...forget sleeping. The pain meds help

that

> but of course I talke that " extra " pill to get it to stop and I know

> that is not good. Things could be a lot worse....I am thankful I

have

> legs to hurt. I try to think of that when it is almost impossible to

> walk to the mailbox Weetie

[Guest guest]

Oh I'm not letting them get away with it. I consider this " pain and

suffering " . I've never been quick to sue, but this is one time that

I'm seriously considering it. I had doctors misdiagnose me with

terminal cancer once and I did not sue because they did not

intentionally hurt me. This kind of thing that my employer pulled is

different. They had to know that this would put my life in a

tailspin. I'm making calls today from my bed. Thanks for your offer

to help. -Betz

>

> Betsy...that is just wron...I do not see how they could do

> that...they better have a very good reason...and they cannot

cancell

> without a notice and grace period...even if you are not paying your

> premiums for whatever reason they have to geive you a notice...I

> believe 30 days. That is pretty low to do to someone in the

hosp!!!!

> I am goint to try and contact the company...I am alos going to

> cintact Providence Hosp...my ins is Providence Medicare

> Extra....Providence being my supplemental coverage. They are non

> profit so I am going to see if there is some way they can pick up

the

> tab if I get my remacaide there instead of thrumy RA doc...it was

his

> idea...I can still see him...he is on the HMO...but his clinic is

not

> non profit like the hosp...plus it will be MUCH closer to my

> home...when I started receiving it there was no set up to do it at

> Providence...but now there is. I hope you can get things workied

out

> with your insurance....if there is anything you need...something I

> can research for you or just an ear to bed...I am here. Weetie

>

[Guest guest]

Hi Jo,

welcome to the list. It's kinda quiet right now.

re your questions:

look thru the archives, eg, msg#912 is the end of a thread about

peoples' experiences on the Buhner protocol.

My own story: I was diagnosed in May 06 with advanced Lyme. I went

on Buhner's protocol for 2 months (the minimum according to him) and

I had great improvement. Then I went off the herbs and the pain in

my leg came back. Now I'm using some of Buhner's herbs and some

others. and am feeling pretty well.

I think if you look over the archives, esp at the beginning, you'll

learn a lot about how people are faring on the protocol.

re doing it on your own - when I started I had only the book (and my

knowledge of Buhner which led me to trust him) and then this

list started, which has been a lot of support and information, about

Buhner's herbs, but also about many other natural treatments.

I don't have a doctor, I would definitely like to have a natural

holistic md who knows about Lyme to consult with, but I haven't

found one.

I feel confident following Buhner's recommendations, as he is very

specific, and he relies on research.

My opinion- the natural approach is especially effective for people

who haven't responded to antibiotics. Personally I wouldn't take an

antibiotic. Just my opinion.

I can certainly understand that after being what I assume is a mis-

diagnosis for 17 years, you are properly skeptical and want

information to make your decision.

I'm sure others will chime in.

Feel free to keep asking quesitons.

best,

ellen

-- In , wyomin@... wrote:

>

> I'm new to the list, and new to a diagnosis of Lyme, although I've

been

> sick for 17 years (diagnosed with cfids). I read Buhner's book and

am

> more optimistic about it than the abx protocols that I see.

>

> But I also wonder if they are enough on their own. Have people had

> success doing his protocol and foregoing the abx?

>

> Also, I have not been able to find a lyme literate doctor yet so am

> wondering if I can start the protocol on my own. Does everyone

work with

> a knowledgeable doctor or is it something I can do on my own? I am

> reluctant to do that because I have a lot of contact with people on

> other protocols and they all have LLMD's. And I've done enough

reading,

> and been sick long enough to know that it can be quite a process

to deal

> with lyme.

>

> I am happy to have found the list, and would appreciate any input

other

> members have. Thanks, jo

>

[Guest guest]

Hi Jo,

I agree with much of what Ellen posted.

Like you, I was misdiagnosed with CFIDS 15 years ago. I am no longer

looking for an LLMD as most I have encountered are locked into abx

treatment, which I don't want to do. I am also tired of the arrogance

and lack of communication that I think abounds in the western medical

community. I think that I do better relying on all that I've learned

throughout the years (and continue to learn)as well as the very

knowledgeable community of other lymies on this and other lists.

Again, like Ellen, I would love to find a Lyme savvy Naturopathic type

doctor (a friend just found a great one in Canada!), but then my

insurance wouldn't cover it. I think the dearth of doctors to work

with just hones our own intuitive skills so that we can heal ourselves.

My main protocol is salt/c and I added Buhner's cp a week or so ago.

Welcome here!

Ballady

>

> I'm new to the list, and new to a diagnosis of Lyme, although I've been

> sick for 17 years (diagnosed with cfids). I read Buhner's book and am

> more optimistic about it than the abx protocols that I see.

>

> But I also wonder if they are enough on their own. Have people had

> success doing his protocol and foregoing the abx?

>

> Also, I have not been able to find a lyme literate doctor yet so am

> wondering if I can start the protocol on my own. Does everyone work with

> a knowledgeable doctor or is it something I can do on my own? I am

> reluctant to do that because I have a lot of contact with people on

> other protocols and they all have LLMD's. And I've done enough reading,

> and been sick long enough to know that it can be quite a process to deal

> with lyme.

>

> I am happy to have found the list, and would appreciate any input other

> members have. Thanks, jo

>