Re: Mission Accomplished - New PCP :)

[Guest guest]

I have been to him...he does NOT test for co-infections. I was treated by him

for nearly 2 years and he is very conservative. I have another dr. in that area

is anyone is interested?

Jackie

[ ] Mission Accomplished - New PCP

Things could not have gone better. Well, maybe if she had turned out to be an

LLMD who took insurance... I went armed with all sorts of convincing literature,

and I didn't need any of it.

My new PCP is a DO (Osteopath) who is very supportive of the whole chronic

Lyme thing. She says that she's not an expert, and she refers her patients to SD

in Boston for treatment. She even wrinkled her nose at the IDSA Guidelines and

commented on how no one seems troubled by treating acne with years of abx.

So, if you're in the Manchester/Bedford area in New Hampshire, and want a

Lyme-friendly primary care provider, I can recommend one.

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

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[Guest guest]

Hi, Jackie,

My Internet was down, and I'm just catching up on a bazillion messages.

I know SD is conservative, and I don't use him myself. I go to an LLMD in

Epping. My excitement was in finding a Primary Care provider who doesn't roll

her eyes at me and tell me I don't have Lyme, while insisting that this

information comes straight from the IDSA and CDC, and therefore should not be

questioned... You know the drill.

It's just nice to have a regular doctor who will happily work with my LLMD, who

understands the controversy and regularly argues Lyme with her collegues. She

hasn't taken the step to educating herself enough to treat chronic Lyme, but she

is supportive of those who do.

As PCPs go, it's really, really good.

Who are you seeing? Is it going well? I would like to know of more LLMDs in

the area. Feel free to email me.

Jacqui <dragonfly2@...> wrote: I have been to him...he does NOT test for

co-infections. I was treated by him for nearly 2 years and he is very

conservative. I have another dr. in that area is anyone is interested?

Jackie

[ ] Mission Accomplished - New PCP

Things could not have gone better. Well, maybe if she had turned out to be an

LLMD who took insurance... I went armed with all sorts of convincing literature,

and I didn't need any of it.

My new PCP is a DO (Osteopath) who is very supportive of the whole chronic

Lyme thing. She says that she's not an expert, and she refers her patients to SD

in Boston for treatment. She even wrinkled her nose at the IDSA Guidelines and

commented on how no one seems troubled by treating acne with years of abx.

So, if you're in the Manchester/Bedford area in New Hampshire, and want a

Lyme-friendly primary care provider, I can recommend one.

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

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[Guest guest]

Hi ,

Things had been going awesome on the IV Doxi but now my insurance feels that I

should be all done now! Go figure...my docor says 4-6 more weeks and the pencil

pushers tell me I should be done...not fair. I have been getting better everyday

and I am so afraid that I will go back to the darkside again! I won't go

gracefully! I want to be better! I have been thinking clearer, more energy and

everything. I never thought I would get here, but I am and now that I know I can

do it it hurts even worse to think it will all come to an end in approximately 5

days when my IV meds run out. I will have to have my picc line pulled in a week

and it just kills me to think of it.

I am thinking of calling someone at Dartmouth since my LLD in Maine isn't really

helping me right now. For some reason, I have been told she won't call the

insurance company for a peer to peer talk to see if I can stay on it just a

little longer...not sure why...any ideas?

I hope that someone has some advice for me.

Sorry if this sounds dramatic, but it has been a hellish week for me. I have

worried all week long about what to do. I have made phone calls so people are

aware of the situation, but wonder who to turn to to continue my IV care?

Thanks.

Jackie

Re: [ ] Mission Accomplished - New PCP

Hi, Jackie,

My Internet was down, and I'm just catching up on a bazillion messages.

I know SD is conservative, and I don't use him myself. I go to an LLMD in

Epping. My excitement was in finding a Primary Care provider who doesn't roll

her eyes at me and tell me I don't have Lyme, while insisting that this

information comes straight from the IDSA and CDC, and therefore should not be

questioned... You know the drill.

It's just nice to have a regular doctor who will happily work with my LLMD,

who understands the controversy and regularly argues Lyme with her collegues.

She hasn't taken the step to educating herself enough to treat chronic Lyme, but

she is supportive of those who do.

As PCPs go, it's really, really good.

Who are you seeing? Is it going well? I would like to know of more LLMDs in

the area. Feel free to email me.

[Guest guest]

Jackie,

Can you swing the cost of another month of IV Doxi without

insurance? Praying for you.

All The Best,

....

helpful support groups for people with MS

LDN_Users & www.ldnusers.org

low dose naltrexone

ldnsupport

TheChronicIllnessCafe

MySpace URL: http://www.myspace.com/jasonvaccaro

On Nov 18, 2006, at 11:42 PM, Jacqui wrote:

> Hi ,

> Things had been going awesome on the IV Doxi but now my insurance

> feels that I should be all done now! Go figure...my docor says 4-6

> more weeks and the pencil pushers tell me I should be done...not

> fair. I have been getting better everyday and I am so afraid that I

> will go back to the darkside again! I won't go gracefully! I want

> to be better! I have been thinking clearer, more energy and

> everything. I never thought I would get here, but I am and now that

> I know I can do it it hurts even worse to think it will all come to

> an end in approximately 5 days when my IV meds run out. I will have

> to have my picc line pulled in a week and it just kills me to think

> of it.

> I am thinking of calling someone at Dartmouth since my LLD in Maine

> isn't really helping me right now. For some reason, I have been

> told she won't call the insurance company for a peer to peer talk

> to see if I can stay on it just a little longer...not sure

> why...any ideas?

> I hope that someone has some advice for me.

> Sorry if this sounds dramatic, but it has been a hellish week for

> me. I have worried all week long about what to do. I have made

> phone calls so people are aware of the situation, but wonder who to

> turn to to continue my IV care?

> Thanks.

> Jackie

>

>

[Guest guest]

,

Could you e-mail me the doctor you are seeing in Epping, NH? I have tried to

get an appointment with SD since I am from the Boston area and he has not

returned my calls. I would like to start treatment ASAP. Thanks!

Mike

Re: [ ] Mission Accomplished - New PCP

Hi, Jackie,

My Internet was down, and I'm just catching up on a bazillion messages.

I know SD is conservative, and I don't use him myself. I go to an LLMD in

Epping. My excitement was in finding a Primary Care provider who doesn't roll

her eyes at me and tell me I don't have Lyme, while insisting that this

information comes straight from the IDSA and CDC, and therefore should not be

questioned... You know the drill.

It's just nice to have a regular doctor who will happily work with my LLMD, who

understands the controversy and regularly argues Lyme with her collegues. She

hasn't taken the step to educating herself enough to treat chronic Lyme, but she

is supportive of those who do.

As PCPs go, it's really, really good.

Who are you seeing? Is it going well? I would like to know of more LLMDs in the

area. Feel free to email me.

[Guest guest]

It's $140 per day without the cost of the nurse...they pulled my picc line today

because of phlebitis anyhow so I am without that...never fails that when it

rains it pours...thank you for the prayers but it's back onto the oral

antibiotics.

Take care ,

Jackie

Re: [ ] Mission Accomplished - New PCP

Jackie,

Can you swing the cost of another month of IV Doxi without

insurance? Praying for you.

All The Best,

...

helpful support groups for people with MS

LDN_Users & www.ldnusers.org

low dose naltrexone

ldnsupport

TheChronicIllnessCafe

[Guest guest]

I'm sorry, Jackie,

You may find you do OK on high doses of oral doxy now that you are on your way.

It's one of the $4 drugs at Walmart, so very affordable. Doxy is my magic

bullet. I feel wonderful on doxy. Until I stop. :-(

So, either I need to do a much longer course, or I need to do something about

the forms doxy doesn't get. But while I'm on it, Aaaaaaaaaaahhhh.

Jacqui <dragonfly2@...> wrote: It's $140 per day without the cost of the

nurse...they pulled my picc line today because of phlebitis anyhow so I am

without that...never fails that when it rains it pours...thank you for the

prayers but it's back onto the oral antibiotics.

Take care ,

Jackie

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

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[Guest guest]

Good to know ! Thank you! I have to wonder why it works so well when we

are on it? It happened to me before and what a let down when I came

off...nightmare! Why do you think that is?

I don't like how the sun " cooks " me when I am on it though...yukky!

Jackie

Re: [ ] Mission Accomplished - New PCP

I'm sorry, Jackie,

You may find you do OK on high doses of oral doxy now that you are on your

way. It's one of the $4 drugs at Walmart, so very affordable. Doxy is my magic

bullet. I feel wonderful on doxy. Until I stop. :-(

So, either I need to do a much longer course, or I need to do something about

the forms doxy doesn't get. But while I'm on it, Aaaaaaaaaaahhhh.

[Guest guest]

Jacqui <dragonfly2@...> wrote:

>Good to know !

>Thank you! I have to wonder why it works so well when we are on it?

>It happened to me before and what a let down when I came off...

>nightmare! Why do you think that is?

Doxycycline has many actions beyond antibiotic. I have been told it is

prescribed for rheumatoid arthritis. It has been shown to slow the progression

of osteoarthritis. My old PCP told me it is anti-inflammatory. And Margh says

she has heard it is an endocrine booster (Thanks, Margh!).

So it hits a lot of Lyme symptoms in addition to fighting the Lyme. Bad news, I

think it is not effective against the cyst form. So once you go off, they will

slowly come out of hiding and creep back. So, you may have to use other drugs

that do get the cyst form, or that drive it out of that form into one that doxy

can kill.

Doxy is also effective against erlichia and bartonella - two co-infections. So

if you are co-infected with one of these, it will help more than drugs that kill

only borrelia.

>I don't like how the sun " cooks " me when I am on it though...yukky!

Yup, you really have to cover up, even in Maine. It's not hard at this time

of the year here in New Hampshire. I make sure my arms are covered, and I wear

gloves when I drive to protect my hands. Only my face is at risk, and I just

ordered makeup with sunscreen - that should help.

It's a trade-off. I look forward to the day I can stand in the sun, throw my

arms open wide, and... not tip over when I close my eyes!

All the best to you - have some turkey and try to forget about fighting Lyme for

a day. You can pick it back up Friday.

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

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