New Member

Report post · October 21, 2006

I too like Jo am interested in hearing what success peeps have had

using different alternative measures.It would also be of benefit I

think to have people incorporate as many specifics into their emails

as possible. there is no substiture for clarity.

I have just finished a 5 month abx regimen, basicaly 3 months on doxy

and 2 months on IV rocephin plus a bit of azithromycin thrown in. I'm

better than when I began treatment but I still have most of the

classic syptoms but in a lessened form. I'm taking a short break and

then will probably start bicillin injections but like you folks, I

hate the medical dynamic which exists out there and the fact that Drs.

are really at sea about chronic lyme. I'd much prefer something

alternative and natural but don't have the necessary info to make a

sound decision

Best to all

mike in ny

> >

> > 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

> >

>

Report post · October 22, 2006

Thanks Ballady for sharing a little about your experience. I've heard

salt/c mentioned but don't know about it. Whose protocol is it; do you

know where I could read about it. I'm more inclined to try the Buhner

protocol but am interested in knowing all the ideas that are out there

if I don't end up being overwhelmed. jo

Report post · October 23, 2006

Hi Jo,

You can visit the Lyme Strategies board and find info. about the

salt/c protocol in the links section. Here is the URL:

lymestrategies/

You can also do both salt/c and Buhner's at the same time.

Buhner said this was definitley okay and many of us here are also on

the salt/c protocol.

All the best,

Ballady

>

> Thanks Ballady for sharing a little about your experience. I've heard

> salt/c mentioned but don't know about it. Whose protocol is it; do you

> know where I could read about it. I'm more inclined to try the Buhner

> protocol but am interested in knowing all the ideas that are out there

> if I don't end up being overwhelmed. jo

>

Report post · October 23, 2006

In a message dated 10/16/2006 7:42:14 P.M. Eastern Standard Time,

itsbetsy@... writes:

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

Betz,

Insist that you get a certificate that states you were insurable, it you

find out that you are really dropped. If you don't get one, everything can be

considered a pre-existing condition when you go to get new insurance.

At least that's the way it works in Ohio. Sorry it took so long for me to

get to this. I've been eating chocolate -- for my heart. lol

Sandy swOhio

Report post · October 23, 2006

I did get the certificate. I also found out today from a patient

advocate group that works through the Dept. of Labor that in order

to qualify for medical leave, the company has to have at least fifty

employees and I would have had to work for them for a year. I only

worked two months. Oh well. It appears that they actually had the

right to chose to be cruel and thoughtless. They could have financed

me for three hundred dollars and instead they put me in a position

where I OWE ten thousand. I got the bill from three of the five

specialists I saw and that was over nine hundred dollars. You can't

get blood from a turnip and my first responsibility is to pay the

rent and living expenses and feed my daughter and myself. I spoke to

my old Medicaid case worker and she told me that I do NOT have to go

to the social services office to reapply. I can go to my local

Community Action office and do the interview there. That office is a

few blocks from my apt. The person I spoke with before told me I HAD

to go to the main office (thirty miles from my home with parking

blocks from the building). She hung up on me twice, not giving me

time to tell her that I was physically unable to go there. Today I

ask my old case worker what becomes of people fresh out of the

hospital in need of medical attention nad medication when they are

too sick to go to Social Services. I guess you have to ask the right

question to the right human. With human being the key word here. She

was kind and gave me a sensible answer. So the ball is rolling

now...ever so slowly but do see slight movement. lol. I've been home

for two weeks today. BP is low again so I need to get to see my doc

soon. All of this makes me want to help people. The community action

office is having trouble finding help so maybe I could man the phone

there until I can really work a real job. Ya never know....-Betz

Report post · November 6, 2006

In a message dated 15/10/2006 22:18:57 GMT Standard Time,

SweetStuff1956@... writes:

I am excited...never expected to find a group for psoriatic arthritis.

I have had it for 10 years now and thanks to remacaide my psoriasis

went away completly...went away completly...<WBR>then when medicare sta

we pay 10% I missed 2 treatments and it came back...sigh.we pay 10% I m

getting it under control again.

Hi Weetie,

I hope you manage to do that ok. Welcome to the group. I'm sorry that I am so

late in welcoming you but I am in Scotland and you know the way the emails

come over here by boat and it takes about a month each way. lol Ok I am always

way behind. You will get used to it. There are lots of wonderful people here so

you should be well looked after.

Take care,

Report post · November 6, 2006

Hi & Everyone,

I am new to the group. I am in need of a LLD in the Northshore area

of MA and I came upon this posting from you stating you knew

of some in the area. Would you please be able to email me the

names?... I would appreciate it very much...

all the best to everyone...

from MA

> >

> > Hello Everyone. My name is and I'm new to the group.

I've

> was

> > diagnosed with MS in Dec of 05'. I've had MS like symptoms for

7

> or

> > 8 years now. A friend of mine has been harassing me for 2 years

> now

> > to get tested for Lyme through Igenex. Like most people I've

been

> > tested for Lyme a few times during those 6 or 7 years and

they've

> all

> > come back negative. About a month ago I decided to listen to

my

> > friend's advice and have another test done through Igenex. The

> IgG

> > Western Blot came back positive showing 3 bands. I was stunned

> when

> > I received the news. Right now I'm trying to set up an

> appointment

> > to go see a LLMD. I live in northern MA and we have a couple in

> the

> > area. I'm concerned about the new guidelines the IDSA has

> > published. Do you guys think I'll run into trouble receiving

> proper

> > treatment?

> >

> > All The Best,

> >

>

Report post · November 6, 2006

, the only trouble you will receive is that you will have to pay

for everything on your own. Those damn ISDA guidelines give the

insurance companies amunition for not paying claims. It so seriously

sucks, and I have no doubt that the ISDA and insurance companies are in

cahoots.

Good luck and God bless!

Debbie

Report post · November 8, 2006

Hi Teena,

I'm also from Australia - Sydney actually.

Don't post much, but have found the group very informative

From my experience, if you are still considering having kids, doctors will not

put you on any of the really strong drugs. Maybe you will feel better from the

other drugs (if you are lucky). They did not do much for me.

Currently I am on Methotrexate, which seems to have finally kicked in, but I've

been in alot of pain over the last 2 years.

Sorry to hear that you have joined us.

Please feel free to email me privately if you wish michelleb@...

Report post · November 8, 2006

> My name is Teena I'm 29 from Australia. Only found out that I have

PA

> last Wednesday.

Hi Teena & Welcome! I'm 34yrs old, and had psoriasis & arthritis

since age 10! The diagnosis is a toss up between psoriatic &

rheumatoid... I had the psoriasis flare & arthrits within 9 mo. of

each other, and I'm still doing pretty well with only some minor joint

damage after all these years. At any rate, I wanted to welcome

another young patient... even after years of this, I get a lot of

misunderstanding about how people under 50 can suffer (badly!) from

arthritis. It hits us younger people too.

I'm sure someone else will fill you in on all the med options, etc.

Again, welcome to this great group!!

-Marietta in Phoenix, AZ

Report post · November 8, 2006

Teena ask: any ideas what

> questions I should be asking? Good and Bad drugs?

>

Teena...I'd read as many posts as you can right now. You'll learn

alot about " PA " life on here. I'd think you'd want to ask how much

damage you have to your joints. Some of us have lots of pain and

minimal damage so it's not always very consistant but you'll need to

know. They will track the damage and that will tell them what meds to

use and how much. Most likely they'll want to be aggressive in

treatment because this IS a progressive disease. Ya gotta slow it

down one way or another. All of the drugs have side effects. Read the

literature but remember that most of the side effects are RARE. With

Enbrel, Humira, and Remicaid, the only side effect that is a given is

that you are prone to infections with them. The other effects listed

may or may not be from the drugs but occured during testing. Would

they have happened to the test participants regardless? Maybe. We

will never know for sure. You'll have to decide what risks you are

willing to take. It's different for each of us, usually depending on

the severity of our symptoms. Ideally, we'd all need NO drugs. I

don't really think there are any " good " ones. Tramadal works for me

for pain. Other drugs that some members of the group praise, don't

touch my pain. It's usually trial and error there. Just accept that

as part of the process and be glad when you hit on a good one first

try. Most of us have learned to be thankful for things that we never

thought much about before PA. We learn to live differently. But we

STILL live. Determine to not let the disease be the whole of who you

are. Do your own research. Doctors are not always sure how much you

know and they might leave out some details assuming you " know " more.

Use the internet and this group and any other sources you can come up

with. They see lots of patients. Ultimately your health is your

responsibility and you'll get better at managing it in time....you

might even be proud of how good you'll get at that. You'll find you

can do many things you did not know you could do. We'll be here for

you when you need us. Sorry you had reason to join the group but

welcome just the same. -Betz

Report post · November 9, 2006

Hi Teena,

Welcome to the group. We've all been where your at in this present

moment. You will find much of the information that you need to know

on this list plus we understand how you feel. So what parts of me

are affected, head, shoulders knees and toes.....knees and toes..

LOL.

Keep the light shining,

Ian.

Report post · November 9, 2006

Thanks Marietta

fortunatly the people at my work have been great.. so far. Had to

yesterday explain to one of my managers that I'll be going on some new

drugs which may affect me adversly. She was pretty cool about it and

said we could work around it.

Cheers,

Teena

Report post · November 9, 2006

Hi ,

I was wondering if I would find any other Aussies on the list =) I'm

in Melbourne.

As for medication I will ask my doctor about pregnacy because whilst I

don't want kids as yet I don't want to rule it out.

Will mail you off list about that.

Teena

Report post · November 9, 2006

LOL thanks Ian.. scary bit is knowing the rest of the words to that

song

Report post · November 10, 2006

Catey - welcome to our group; I'm sorry you have to be a part of us,

though. How difficult for a mom to hear this diagnosis about her

precious 5-year old daughter! Please don't panic, though; an early

diagnosis should mean that your sweetie won't suffer any permanent

damage from the disease and that she will have a much better quality

of life than if it had been missed or misdiagnosed until much

later. Did the diagnosis come from a rheumatologist? Where are you

located?

Feel free to vent here, and to ask all the questions you need to -

even the ones you fear might be " dumb " . We are all here to help one

another manage the best possible quality of life.

best regards,

sherry z

Report post · November 10, 2006

Catey Hi I am sorry to hear about your daughter do you also have PA?

What symtoms was your daughter having that led to the diagnosis and

who made it? I have a 5 year old who complains of hand and foot pain

and I try to dismiss but it is in the back of my mind and other family

members always tell me oh its nothing so when I read your post it hit

a nerve and it made me wonder about those weird pains that sometimes

wake him up at night or just seem to come out of the blue I also

suffer from PA so I know how bad the pain can get so I don't want to

ignore it. Good luck with your daughter and take care. LINDA

Report post · November 11, 2006

nice to meet you. cathy from ma

Report post · November 11, 2006

Hi,

I don't have PA. I have a brother and sister in their 40's with Psoriasis, but

no arthritis. Her teachers actually noticed when school started this year. She

was sitting out of activities more often. Then there was noticable swelling in

her knee and her ankle was turning in. Once we saw the Pediatric Rheumotologist

and he pointed out the swelling in her fingers and toes, it was quite obvious.

I can't believe I did notice it myself. She never really complained that it

hurt, she would just say her legs were tired and she wanted to be carried.

Also, she was kinda stiff in the morning. We initally took her to our

Pediatrician who ran blood test that indicated possible arthritis so we were

referred to a specialist. You might want to start there just for your piece of

mind. No sense worrying about it if a simple blood test could rule it out.

`°º¤ø,¸¸,ø¤º°`°º¤ø,¸,ø¤º°`°º¤ø,¸,ø¤º°`°º¤ø,¸,ø¤º°`

Catey

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