update

[Guest guest]

Who did you address that too?

how did you deal with it at such a young age? I've always been very active

and now I have a hard time going shopping. My legs have always been my

strong point. Now I have to rely? on my arms for my strength. I'm the

mother of four children so I stay busy that helps. Thank God I've always

been active. Thanks for the encouragement. MTNCAT in Ohio

[Guest guest]

Thanks Judy

You're right I do still believe - but have probs with some the people in the

churches. My Christianity is on hold at the moment but some of the comments I

have had and replies have really helped me see things with a bit more

perspective.

Nigel ) (uk)

[Guest guest]

In a message dated 09/19/2001 2:46:27 PM Eastern Daylight Time,

rcrockett@... writes:

> How did you get your insurance to agree to the IV antibiotic

> therapy? At lest you will get well faster if you do the IV therapy!

> Hopefully, you will continue on the doxy,. too.

Before I left the hospital last month, my insurance company had already

agreed to the Iv therapy. Is there normally a problem with that???

Update....my dr has put me on the doxy. twice a day until the ehrlichiosis

test comes back (how long does this take, it's been forever). They took out

midline due to my white blood cell count dropping again..it was 3.7 and went

to 3.1 The specialist said that that can occur from a long therapy of meds?

So he took it out after my regular dr (on vacation) had extended it from 4 to

6 weeks a few days before. I am going to be contacting that dr you all

recommended in boston, thanks again! I've just been feeling yucky and keep

forgetting, ugh. I threw up twice last friday, bad headache and achiness last

weekend...then today I notice my lymph node on my left side of my neck

(that's the side I have the bad headaches on, especially behind the ear)...I

can't wait to go to the dr's friday< I don't thinkt his lyme is gone...I

don't think it's EVER going away and they said with 2nd stage it would. I

think they were wrong!

w

Jody

TDream what you want to dreamT

go where you want to go; be what you want to be,

because you have only one life

and one chance to do all the

things you want to do.

U <A HREF= " http://hometown.aol.com/tarabencaitysmom/index.html " >Jeff & Jody's

Family</A> U

mn

[Guest guest]

> Dear Friends,

> I emailed my LLMD to ask if I should consider a chest port.

>

> I know people discussed Picc lines vs. chest ports, but I can't

remember

> what people said. Does insurance tend to pay for it?

Marie, I can't imagine why they wouldn't. Often, chemo patients get

the port " installed " ........as a nurse, I preferred accessing a port

vs. PICC......primarily because it was SO MUCH EASIER on the patient!

I supposed there might be a few " Nazi Nurses " who enjoy inflicting

pain on their patients, but I wasn't one of them.

You still get a " needle stick " with the port......try to imagine the

stopper of a heparin vial....you know, it has that rubber center where

you insert the needle? A port is very similar to that, only it is

under the skin. So they can use it to put things in, and also to take

things out! All those phlebotomy sticks can cause damage to the veins

which can lead to all kinds of other problems we dont even want to

think about.

The other great thing about them is besides lasting a lot longer than

a PICC.......they are less prone to infection. You access it using

sterile technique (clean the area in a circular motion from the center

outward in larger concentric circles) and people just don't get nearly

the infections as the do with PICCs.

Plus..you don't have to deal with it rendering one of your arms

useless, or having to keep it dry while bathing, etc.

> Thanks for letting me " spill. " My mom isn't coming until tomorrow

night.

You know, we're never too old for our Mom

> At least I educated two doctors tonight ab. the real story of Lyme.

That, in and of itself, is such a gift to us all...the entire Lyme

community! THANK YOU! Were the docs curious? Do you think they

believed you? I would love to hear more about their " lesson " <grin>

Please post as soon as you feel up to it. You've really had rough

week, kiddo.

Take care,

NurseDeb

[Guest guest]

I have had all the symptoms you describe ,, Have you had a brain spect rather

than another tap ,, will show neurological involvement ,, as well Brain spect

along with an MRI with contrast,, I was on doxy it did not seem to do much ,

but I must confess I know it is used for various asepcts ,, I was on

rochephin developed allergy ,, now on biaxin and palquenil ,, I too had the

blurred vision at one time,, pain ,, headaches etc,,keep the faith ,, glad

you are seeking another opinion ,, I have come to believe there is only a

certain number of antibodics used to comabt this horrific disease,, keys is

right dose,, hope it all goes well ,, seems also the major concern is the

damage done once we do get better in the loosest sense ,, hugs

[Guest guest]

In a message dated 10/16/2001 2:33:23 AM Eastern Daylight Time,

tashalea@... writes:

> I was on

> rochephin developed allergy ,, now on biaxin and palquenil ,, I too had the

>

> blurred vision at one time,, pain ,, headaches etc,,keep the faith ,, glad

> you are seeking another opinion ,, I have come to believe there is only a

> certain number of antibodics used to comabt this horrific disease,, keys is

>

> right dose,, hope it all goes well ,, seems also the major concern is the

> damage done once we do get better in the loosest sense ,, hugs

>

I did ask the dr about a brain spect, not Dr. D but my other IDS. Who hasn't

called me back since I left a msg that I was going to see Dr. D, I hope he's

not upset with me. I don't think the doxy. did much either, I was having

such headaches with it...I already feel a difference with the headaches, I

don't know if it's the antibiotics or the neurontin though but my perkoset

dose is lessening!

G Jody G

O May you have enough happiness to make you sweet,

enough trials to make you strong,

enough sorrow to keep you human,

enough hope to make you happy. O

' <A HREF= " http://hometown.aol.com/tarabencaitysmom/index.html " >Jeff & Jody's

Family</A> '

[Guest guest]

Alicat: Two weeks ago I had my first Remicade and due for second tomorrow -

I can't wait! I still feel zillions better after just the first dose. I

hope you can get it and that you experience the same great results!

[Guest guest]

Ali,

I am so glad that you were able to get the help you so desperately need. I hope

you can get on the remicade asap so you can get to feeling better right away.

Best wishes.

>>> alicat1976@... 04/29/02 14:01 PM >>>

[Guest guest]

Hi Connie, Rose, and Sue,

Thank you all for your encouraging comments. Hearing that it's

common for others to notice improvements before you do yourself makes

me feel better because it sounds like the usual way it works and is a

logical early sign. I understand what you're all saying about how we

sound and dress and the words we use, etc. The thing with me though

is that since things are no better with my boyfriend and me and it's

obvious I'm gonna be cheated out of SSDI forever the two worst things

of all--that I'm sadder and more bitter every day and I cry and

complain and use not very nice words because I'm so miserable in this

vile existence and cheated out of all the good things--so in my case

I don't think these particular points apply. In fact when my mother

first commented I seemed better about four and a half weeks ago she

even added " and I don't mean happier " . I will NEVER be happy again--

with what's been done to me. I also never bothered much about

appearance and now don't at all so it's not that! But five weeks ago

a relative who hadn't seen me since right after I started the doxy

told my mother I looked better (she didn't tell ME which makes it

seem more genuine--as it wasn't just a polite comment to my face--I

mean she didn't have to say that to my mother.). It was later that

week my mother first said she thought I seemed better. No, a doctor

hasn't said to keep taking doxy--in fact he refused to refill it so I

won't be able to get any more of the liquid so now I'm gonna refill

the capsules (taste horrible since I can't swallow pills.)and when

the refills are done that's the end I guess. No doctor will diagnose

or treat me for Lyme. Also, I totally agree the dose is too low and

I've asked several MD's for a higher dose to no avail. Anyway I'm so

glad to hear my experience is common and it would give me a speck of

hope but for knowing I'll never be treated enough to have it make any

real difference. By the way anyone able to help me about whether

those two MD's are LL--they are both in Central Jersey but I don't

want to post their names of course. No, taking doxy isn't improving

my relationship with my mother--it's making it worse if anything! I

just can't win! Thanks again for the feedback. I had no intention

of stopping the doxy but now I have more incentive to know I am right-

-I always have but like y'all know I have no loved ones or doctors

who have ever believed me I have Lyme. But now I know I was right to

believe in myself. Trouble is that they all destroyed my heart and

body and life because they didn't. Thanks guys.

Madeleine

[Guest guest]

Hi Madeleine

<<<<<<<. But now I know I was right to

believe in myself>>>>>>>>>Anyway I'm so

glad to hear my experience is common and it would give me a speck of hope

>>>>>>>>

Hold on to these thoughts..........they came out of your mouth in your

email.

Its this speck of hope and belief in yourself, that will get you

better..........I know its hard to feel that in your state right

now............I do know.

I live alone.............and most of the time dependent on me and only me,

and my inner constitution to keep going, keep researching, keep trying new

things..........I just could not bring myself to continue to live this

horrible way of surviving. Sure I continued to have my days I wanted to

give up..........was even hospitalized for being suicidal.........but it was

after that experience.........that I realized how much power I have within

myself............it has to start there...........I would get my mind in a

state where I would visualize the white blood cells in my body becoming

large enough to swallow every spirochete in my body!!

The mind is a powerful tool and complicated as well, you can get your mind

so confused so negative, and feel the world is against you and then you can

get so screwed up you think about killing yourself. I was there,

fortunately, I now see how I can get my mind to get my body to go

on..............is it easy..........absolutely not!!!!!!!!!!!!!!!!!

But after a lot of hard work.............I have both my body and my mind

back............

Hang in there Madeleine.........If you don't have the resources, money,

friends, or family, or even Drs. to help you attain a normal life

again.......Start using...your mind and body to help heal yourself!! Its

better than doing nothing.

There are all sorts of methods, from meditation, to aroma therapy, to

reflexology, to yoga.........that have strong healing powers. Go for it!!

You have nothing to lose, but life itself..........fight for you!!

I find reflexology (feet-hands) really helpful.........on working on

building my immune system.

I hope you can use your mind and body to regain control of your life.

Thinking about you,

ConnieK nwnj

[Guest guest]

Madeleine,

Yes, you are right and haven't gotten the dose you

need. I had to take up to 2,200 mgs or Doxy a day

(and I couldn't tolerate the therapy for long enough

and still didn't kick the problem). Zithromax is the

answer but also needs high doses for an extended

period. It would cost several thousand dollars for me

to get the therapy I need and no doctor will write it

for me...oh, well!

Isn't it interesting when we learn that no matter

what, we still have ourselves. Hang in there and stay

tough!

Love,

-Jeff L.

--- lemans46 <Sierra376@...> wrote:

> Hi Connie, Rose, and Sue,

>

> Thank you all for your encouraging comments.

> Hearing that it's

> common for others to notice improvements before you

> do yourself makes

> me feel better because it sounds like the usual way

> it works and is a

> logical early sign. I understand what you're all

> saying about how we

> sound and dress and the words we use, etc. The

> thing with me though

> is that since things are no better with my boyfriend

> and me and it's

> obvious I'm gonna be cheated out of SSDI forever the

> two worst things

> of all--that I'm sadder and more bitter every day

> and I cry and

> complain and use not very nice words because I'm so

> miserable in this

> vile existence and cheated out of all the good

> things--so in my case

> I don't think these particular points apply. In

> fact when my mother

> first commented I seemed better about four and a

> half weeks ago she

> even added " and I don't mean happier " . I will NEVER

> be happy again--

> with what's been done to me. I also never bothered

> much about

> appearance and now don't at all so it's not that!

> But five weeks ago

> a relative who hadn't seen me since right after I

> started the doxy

> told my mother I looked better (she didn't tell ME

> which makes it

> seem more genuine--as it wasn't just a polite

> comment to my face--I

> mean she didn't have to say that to my mother.). It

> was later that

> week my mother first said she thought I seemed

> better. No, a doctor

> hasn't said to keep taking doxy--in fact he refused

> to refill it so I

> won't be able to get any more of the liquid so now

> I'm gonna refill

> the capsules (taste horrible since I can't swallow

> pills.)and when

> the refills are done that's the end I guess. No

> doctor will diagnose

> or treat me for Lyme. Also, I totally agree the

> dose is too low and

> I've asked several MD's for a higher dose to no

> avail. Anyway I'm so

> glad to hear my experience is common and it would

> give me a speck of

> hope but for knowing I'll never be treated enough to

> have it make any

> real difference. By the way anyone able to help me

> about whether

> those two MD's are LL--they are both in Central

> Jersey but I don't

> want to post their names of course. No, taking doxy

> isn't improving

> my relationship with my mother--it's making it worse

> if anything! I

> just can't win! Thanks again for the feedback. I

> had no intention

> of stopping the doxy but now I have more incentive

> to know I am right-

> -I always have but like y'all know I have no loved

> ones or doctors

> who have ever believed me I have Lyme. But now I

> know I was right to

> believe in myself. Trouble is that they all

> destroyed my heart and

> body and life because they didn't. Thanks guys.

>

> Madeleine

>

>

__________________________________________________

[Guest guest]

Hi Jeff,

I'm sorry you couldn't get cured even with that high dose of doxy--

never heard of such a high dose before! I think Dr. B. says 300-

600mg a day. There are no words fit for the internet to describe

these doctors who refuse to diagnose and treat us. Are you taking

low dose doxy or zith now and is it doing anything at all? I would

try taking 300mg a day but afraid in case I get sick with it (as the

ID said I would months ago when I asked for it.) plus that since when

these remaining refills are done I guess that will be the final end

of my tx forever and obviously I'm still gonna be very sick in just a

couple months or so since I'm no better after nearly six months of

doxy. So if I take what I have faster (by taking more at a time.)

then my tx will end even sooner. I lose no matter what. And still

getting NO sympathy and NO fighting-for (against doctors.) by loved

ones. In fact things here continue to get worse. Just yesterday my

mother gave me her usual " well, I don't know that you have Lyme "

line. Me and my father had a humongous fight yesterday so I am more

bitter than ever. Thanks for listening. Jeff hope someone will Rx

the doxy in as high a dose as you can tolerate. I certainly

understand you being unable or unwilling to lose thousands of dollars

on zithromax. I wouldn't either. Lyme victims have truly been

cursed.

Madeleine

[Guest guest]

Jeff said,

<<<<<<<<<Zithromax is the

answer but also needs high doses for an extended

period. It would cost several thousand dollars for me

to get the therapy I need and no doctor will write it

for me...oh, well! >>>>>>>>>

Why won't a Dr. write out that prescription, if you feel in your gut that

this is the answer for you? Find a Dr. that will, work with a Pharmacy,

work out a payment plan, take out a loan, do what ever it takes...........I

just finished paying back a loan..........

Worth every penny, I am in remission...........feel wonderful

Conniek nwnj

[Guest guest]

Madeleine,

Wow, that IS scary that your closest loved ones don't

believe you have LD. I had the same problem with my

loved ones as well. It really sucks. Well, I KNOW

that you have it and you can have anyone call me and

I'll tell them for ya.

The reason why your therapy is ineffective is its not

at a high enough dose. You are achieving maintenance

levels...not theraputic. This I know because I have

both cured myself of LD and failed. Do you track and

record your symtoms? If not, do so (even if not on

therapy). It documents the situation objectively and

can be used to talk rationally with physicians should

the opportunity come along. There is a good Lyme Log

posted by our group. Go to " groups " at the bottom of

this page, Select " " , select " Forms " then

select " LidickerLymeLog " . Make copies one for each

month. Record both your symtoms and your therapies

each day.

If you are difficult case with Doxy as am I, try Zith.

It is much easier on your system and more effective.

Have the physician monitor the blood levels each week

(this is a resonable request as it is a blood test the

insurance companies pay for it willingly). Make sure

to take whatever oral dose gets you the top score of

the " normal " range. You are not asking for a high

dose, just the top of the " normal " range. To tell for

yourself; if you have severe gut cramping and diarrea

and skin rashes...that is the correct dose. If the

Adverse Events fade, up the dose until they are back

again. Once you get to the right dose, all symptoms

should not be present except in trace form. The trace

symptoms should fade in a week or two. Once you are

experiencing no symptoms at all. Keep checking the

blood levels and continue for three weeks. If you

have no symptoms for three weeks, go off the meds and

you are done...forever...until you get reinfected of

course (like I did!)

Good luck!

-Jeff L.

PS: do you live in the Sierra Nevadas? I'm moving to

get away from LD and don't want to move right into it

again!

--- lemans46 <Sierra376@...> wrote:

> Hi Jeff,

>

> I'm sorry you couldn't get cured even with that high

> dose of doxy--

> never heard of such a high dose before! I think Dr.

> B. says 300-

> 600mg a day. There are no words fit for the

> internet to describe

> these doctors who refuse to diagnose and treat us.

> Are you taking

> low dose doxy or zith now and is it doing anything

> at all? I would

> try taking 300mg a day but afraid in case I get sick

> with it (as the

> ID said I would months ago when I asked for it.)

> plus that since when

> these remaining refills are done I guess that will

> be the final end

> of my tx forever and obviously I'm still gonna be

> very sick in just a

> couple months or so since I'm no better after nearly

> six months of

> doxy. So if I take what I have faster (by taking

> more at a time.)

> then my tx will end even sooner. I lose no matter

> what. And still

> getting NO sympathy and NO fighting-for (against

> doctors.) by loved

> ones. In fact things here continue to get worse.

> Just yesterday my

> mother gave me her usual " well, I don't know that

> you have Lyme "

> line. Me and my father had a humongous fight

> yesterday so I am more

> bitter than ever. Thanks for listening. Jeff hope

> someone will Rx

> the doxy in as high a dose as you can tolerate. I

> certainly

> understand you being unable or unwilling to lose

> thousands of dollars

> on zithromax. I wouldn't either. Lyme victims have

> truly been

> cursed.

>

> Madeleine

>

>

__________________________________________________

[Guest guest]

Connie,

Yes, you are correct. But what you mention is

another project I must tackle after traveling west.

Problems are the usual. Its an extremely high dose

for a long time and I've never tested positive once in

five episodes (found ticks four times). Basically

impossible until they come out with a better test.

If anyone knows a doctor who will prescribe super high

doses of Zith for someone who claims to have LD....let

me know!

-Jeff L.

--- ConnieK <conniek@...> wrote:

> Jeff said,

> <<<<<<<<<Zithromax is the

> answer but also needs high doses for an extended

> period. It would cost several thousand dollars for

> me

> to get the therapy I need and no doctor will write

> it

> for me...oh, well! >>>>>>>>>

>

> Why won't a Dr. write out that prescription, if you

> feel in your gut that

> this is the answer for you? Find a Dr. that will,

> work with a Pharmacy,

> work out a payment plan, take out a loan, do what

> ever it takes...........I

> just finished paying back a loan..........

> Worth every penny, I am in remission...........feel

> wonderful

> Conniek nwnj

>

>

>

>

__________________________________________________

[Guest guest]

GW,

If you more or less have unlimited testing at VA...I would go through

several cycles....you're doing 100 or 200 mg/wk?

A good way to test for T levels is the last day of your cycle...so if you

inject on a Tuesday....be bled on Monday (end of cycle)....inject on Tuesday

be bled on Wednesday (beginning of cycle). Do this several times to see how

your body responds. Will VA measure free T?

Estrogen/estradiol (E2) management is probably very individualistic. Will

VA also measure estradiol....that value is helpful for calculating T/E2

ratio.

My own experience is given below....i'm not going to post the values when I

was using Chry/Dim gel....most of E2 values were out of range....the 8-2-01

was baseline for my Es and that day PCP Rxed Arimidex...

.. . . . . . . . . . . . .. . .Estradiol. . . . . . . . . . . Estrogen

8-2-01.........................87..............................198

Began 1 mg/dy Arimidex

9-29-01.......................37................................85

Began 1 mg Arimidex eod

11-2-01.......................59...............................101

Resumed 1 mg Arimidex/dy

12-5-01.......................50...............................124

3-11-02.......................16.................................44

1 mg Arimidex for two days....one day off

4-29-02........................27.................................73

7-2-02..........................52................................112

So I have to tinker again...I went back to 1 mg/dy...will stay there for

maybe month. I've tried 1 mg/eod...that didn't work...so I think i'll

alternate 1 mg/dy and 0.5 mg /dy.

When my E's were so high when I went on Arimidex, PCP checked my pecs and no

breast tissue development.

Try to get E baseline if you can, even if it may mean delaying beginning an

E management....you want to know where you were for subsequent data to be

meaningful.

Just my experiences....

Good luck...

OR eon

64 yo

HIV+ gayman

[Guest guest]

" My last test result showed my estrogen total at 140 pg/ml. "

It seems very high to me for only being on 100 mg once. What form of T

are you on? Cypionate, 200mg/ml? My estrogen has never been that

high, but I've mostly been getting estradiol tested lately.

" When would be a good time to request another blood test to check my

estrogen? "

I do it every three weeks. Get estradiol checked too. There's a rough

and a sensitive estradiol test. The sensitive one is more accurate

apparently.

[Guest guest]

Hi ,

I'm going into psychiatric nursing in the next few years. I didn't know

I could choose just that when I went to work in a psych unit a few years

ago. I'm still there and I love it. One of the things that I was

thinking about was that my own experience with chronic illness would

make me an ideal candidate to work and with people who also live with

chronic illness. Those I work with now are highly supportive. It

doesn't have the same physical demands that being an RN would expose you

to. An RPN (Registered Psychiatric Nurse) specialises in psychiatry

from start to finish and mental health professionals are leaning more

and more toward hiring RPNs rather than RNs because of that special

training.

Anyway, I just wanted to show you one more option if you are thinking

about a medical profession.

Always wanted to be an RN but I know cause my illness that won't be

possible. Stepmom is an RN and she suggested it. She said maybe an LVN

would be better since they do a lot of administrative tasks. Maybe

occupational therapy? Weren't #2 an occupational therapist? Did

you have to quit because of PA? I heard that is less physically

demanding. I really need a career change so I would appreciate any

input anyone may have. We will see....

[Guest guest]

In a message dated 08/13/2002 7:24:56 PM Eastern Daylight Time,

leslieiansa@... writes:

> Obedience school can help

- it sure can and 6 months is not too young. Some are very reasonably

priced. Find out about some in your area. It should help a lot. It did

with my lab.

[Guest guest]

, we have 3 dogs (one was inherited when my mom died) and they have been

to obedience school. Although they are small, controlling 3 dogs on a walk can

be a challenge unless they think of you as the pack leader. I loved taking them

(individually) to obedience classes and doing the homework with each of the dogs

was a wonderful bonding experience. As well, having your dog spayed or neutered

is not only vital for their own health and controlling inappropriate breeding,

but it also often calms a vivacious dog down a little bit. With love, praise,

reward and consistency, you should be able to train your dog to go on walks with

a minimum of tug warfare.

Good luck.

Kathy

> Obedience school can help>

[Guest guest]

pugnfriend@... wrote:

>, we have 3 dogs (one was inherited when my mom died) and they

>have been to obedience school. <snip> As well, having your dog

>spayed or neutered is not only vital for their own health and

>controlling inappropriate breeding, but it also often calms a dog

>down a little bit. With love, praise, reward and consistency, you

>should be able to train your dog

Excellent advice! Puppies do grow up and you'll be so glad you kept her!

Loving animal companions are definitely one of God's brighter blessings.

A side note: I'm not a dog person at all; I prefer cats. However, this

week my sister and her boyfriend came to visit with both their dogs. My

sister's dog is a Lab-Newfoundland-Rottweiler mix; the other's a German

Shepherd-Rottweiler mix (both fixed). I'd been around my sister's dog

before and even though it's wa-a-ay too big and drooly for me, I can see

the dog's intrinsic loving nature; the dog isn't happy unless he's

physically touching -- by that I mean leaning against -- the people

around him. Her boyfriend's dog on the other hand I just fell in love

with. That dog is so responsive, calm, and companionable that if I'd

been asked I probably would have taken him in. Of course, he's 9 years

old too! Age -- and training -- make a huge difference. Much as I love

my cats, they don't have anywhere near this sort of out-and-out doggie

affection that's such a joy to be around.

Hope it works out for you and your puppy!!

--Louise

[Guest guest]

In a message dated 08/21/2002 4:34:52 PM Eastern Daylight Time,

xmac23@... writes:

> I have

> almost no physical activity because of this disease -

Hi - It sounds like you really enjoyed being athletic before the pa and are

missing it now. Can you join a pool near you? Your joints aren't stressed

in the pool and you might feel better if you could do some physical activity.

I know they can be expensive, but it might be worth it for you to look into.

Take care,

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

PatB moderator note: Don't forget to ask at a Motel if you can use their pool if

there isn't one available thru a recreation facility. Sometimes they will work a

deal with you for a modest amount. Like having a pass or ticket just for the

pool and/or weight room. Never hurts to ask.

[Guest guest]

Many YMCAs offer Aquatics for Arthritics programs. The classes are tailored

especially for our needs and the exercises are conducted in warm water pools

which are very kind to sore joints. The Ys (at least here in NYC) do not

require you to join the Y to enroll in the aquatics for arthritics classes.

The cost here is something like $49 for an 8 week session which is really

cheap. It might be even less expensive in other cities. In addition, the

Athritis Foundation has very inexpensive exercise videos both for the pool as

well as for land. They are well worth the investment.

Wishing you the best,

Kathy

> > I have

> > almost no physical activity because of this disease -

>

> Hi - It sounds like you really enjoyed being athletic before the pa and are

> missing it now. Can you join a pool near you? Your joints aren't stressed

> in the pool and you might feel better if you could do some physical

> activity.

> I know they can be expensive, but it might be worth it for you to look into.

> Take care,

>

>

[Guest guest]

xmac23 wrote:

> Hello all. It's been a while since my last post, so I felt like

> venting. My situation - 28 yrs old, male, P started at about 19

> years old and PA about 23.

Vent away!! My P started at exactly the same age as yours. I honestly

don't know when the arthritis component started, but on reflection, it

was a _lot_ longer ago than I realized at the time (I'm now 52). I think

it did start while I was somewhere in my 20s, misdiagnosed as tennis

elbow (never played tennis in my life).

I can sympathize with the hands hurting when someone tries to shake

yours or vice versa -- that only recently started to be a problem for

me. (Up to the past couple years it'd been only an isolated knuckle or

two that bothered me, but the hands are getting into the act now.) Yes,

it is kind of embarrassing. I also agree that turning door knobs (and

need I mention opening jars!) can be painful too. As for golf, I've

mostly stopped playing too but in my case giving up golf isn't a

hardship, ha ha :-). I only ever played for the social aspect of it (and

have never been very good, try as I might), and nine holes has always

been plenty (yes, I know, there's a lot of folks who think that's just

half a game!!).

As someone else has suggested, you might try swimming for activity;

that's quite good. And I suspect you're wanting to do outdoor sports,

(what about serious hiking or mountain biking?) but (as someone who just

basically wants to get exercise over with, unless it's swimming) I find

using a stationary bike or Nordic Track to be very good, also.

Re: antibiotic protocol (otherwise known as AP) -- I saw another post of

yours where you'd asked about this. I'm on it, 4 months now, with not

much to show for it, however, as of yet. See the other posts from

Greenly and Ron (and one of mine) from yesterday/today about that ...

you might also check the rheumatic e-mail list on for more info.

It's worth a try, especially if you've only had PA for 5 years.

best wishes,

Louise

[Guest guest]

...... Chose Sulfasalazine over MTX because my wife and I

> decided to have kids after 4 years of marriage.

Sulfasalazine can cause infertility in men. Check this with your

doctor, the information is in the standard drug reference books.

Best regards , Greenly

[Moderator's note: My 1998 PDR says that infertility has " been described in men

treated with sulfasalazine. " Note that it doesn't say what percentage of men are

affected or how much their sperm count was reduced. Your doctor should be able

to take a sperm count to see whether or not your sperm count is affected, and if

so by how much. In any case, the effect is only temporary and can be reversed by

stopping the medication. Ron]