RE: Digest Number 543

May 12, 2000

Has anyone heard of a medication called " Procrite " . It is used with

chemotherapy agents (such as MTX) to reduce the fatigue associated with

the treatment. I'm doing some internet searches but I figure someone in

this group will already have the info.

Barry

February 22, 2002

Dear

I think we should definately write to the BBC about this. It might be worth

asking the CPHVA to do it as our professional organisation or getting your

branch at the CPHVA to do it. What about contacting Shaun Nobel at the CPHVA

he is the press officer and might be able to give some advise. I will

contact him if you like I will wait to hear what you think. We could also

contact RCM and RCN if anyone is also a member.

nne

Digest Number 543

February 22, 2002

Thanks nne that sounds like a good option our next branch

meeting is march 26 so wont be able to raise this til then if you

could ask shaun his thoughts they may be doing something already

regards sarahg

> Dear

> I think we should definately write to the BBC about this. It might

be worth

> asking the CPHVA to do it as our professional organisation or

getting your

> branch at the CPHVA to do it. What about contacting Shaun Nobel at

the CPHVA

> he is the press officer and might be able to give some advise. I

will

> contact him if you like I will wait to hear what you think. We

could also

> contact RCM and RCN if anyone is also a member.

> nne

>

> Digest Number 543

>

February 22, 2002

Thanks nne that sounds like a good option our next branch

meeting is march 26 so wont be able to raise this til then if you

could ask shaun his thoughts they may be doing something already

regards sarahg

> Dear

> I think we should definately write to the BBC about this. It might

be worth

> asking the CPHVA to do it as our professional organisation or

getting your

> branch at the CPHVA to do it. What about contacting Shaun Nobel at

the CPHVA

> he is the press officer and might be able to give some advise. I

will

> contact him if you like I will wait to hear what you think. We

could also

> contact RCM and RCN if anyone is also a member.

> nne

>

> Digest Number 543

>

December 12, 2003

Vicki,

Our original doc misdiagnosed it, saying it was " part of the lower lumbar "

that was effecting my husband, and it turned out to be cervical. Luckily, we

found a good surgeon who knew enough to do a complete cervical and thorasic MRI.

Dont wait on it.. He had massive bone spurs almost severing the spinal

cord... it's best to catch it early.

" I came to a place where a Path split up till two. I choose the One I didn't

know and enriched my Life " ~The Tao of Pooh~

December 12, 2003

Thank you I will get right on that Monday morning

Vicki

April 16, 2005

Dear Charlotte, (and Hi Sheila!)

We are in Iowa City, IA, daughter is 22 now. We've had to make " a case "

for getting insurance coverage, but it hasn't been difficult. Wish I'd

been able to be in touch with others back in 1983...this support would

have been so great...still is... We had canthoplasty first, then

fascial slings at age 5. replaced with gortex slings at age 16.

everything can stretch as we age & grow! Had to " create " upper lid

creases...ongoing problem remains a " gap " in the lower lid..chronic

irritation & corneal concerns (so those are legitimate medical issues,

not cosmetic). My daughter says she is glad we pursued surgery when she

was little; it was/will be her decision as she became older.

Feel free to call: Cheryl Vahl, 319 338 8285

blepharophimosis paying for surgery

Hi my son and I have Bleph and my ins. will not cver it what should i

do.

February 6, 2006

Hi, my name is Regina and my best friend, Anjanette and I are scheduled to

have our surgeries on February 17. We've got the financing finished,

started our exercise plans, made the travel arrangements and even started

packing.....so now we just wait. Both of us have been overweight since

childhood and are looking forward to our " new " life. Is there anything that

we need to know? What kind of clothing for after the surgery? Is our

return flight going to be really uncomfortable? 11 days and counting

down.....

Regina

Re: acid reflux.....I " m desperate!!!!!!!!!!!!!!!

Becky,

Penny is right, it is better to spit out the thick saliva specially

inthe morning when youa re tighter.

Gaviscon before going to bed may also help with the reflux. It will

get better the swelling has to go down really soon,just hang in there

and take care in the meanwhile.

Please follow the instructions the doctor gave you today and call us

tomorrow to see how you are doing.

Nina

//So now my decision is do I spend

double the amount and have a $325

monthly payment? Or do I sell my car and pretty much pay for it all

that way and go to Mexico? //

,

Here is my suggestion. If you can get surgery financed then you have

pretty good credit. I would sell the car to pay for the surgery in

Mexico then have a NEW car financed fur $325 a month :-)

You get more for your money this way. Hope this helps

7/18/05

280/210/140

February 6, 2006

Hi Regina and friend,

Best of luck to you both on your journey. Sounds like you have the

plans all set which are good. You'll be in GREAT hands there, they are

so nice at the hospital and you'll feel comfortable. Dr. A, Yolanda,

Nina, and the rest of the team are just very caring and

considerate of how you are feeling. They will come in at differnt

times to ask how you are doing, and what they can do to make you

comfortable...it's awesome!

Things to bring, well you may want to bring a heating pad if you

experience shoulder pains...which can happen after surgery or down the

road like me, the heat works wonders. If you are packing light, try

the Thermacare Patches...they work great! They have some for the

shoulders as well. It was warm when I was there so you may want to

bring a light sweater or jacket for SDiego, it's been overcasted here

and a tad chilly in the mornings but for Mexico you want to keep it

light. I took 2 sets of pjs with me, slippers, oversized shirts just

in case. You'll be in the gown for a day or two depending on how you

feel. I brought chapstick, lotion cause my skin was dry plus it was

nice to have some comforts of home...I love Bath and Body lotions! You

might want to bring magazines, there are some stations in english, I

had brought my laptop to watch dvds. Gas X to help with the gas, but

you may want to run this by DR. A. You may have to wait to take them,

I'm not sure I didn't have too much of a problem.

Anyways, good luck to the both of you!!!

Kelli

//So now my decision is do I spend

> double the amount and have a $325

> monthly payment? Or do I sell my car and pretty much pay for it all

> that way and go to Mexico? //

>

> ,

> Here is my suggestion. If you can get surgery financed then you have

> pretty good credit. I would sell the car to pay for the surgery in

> Mexico then have a NEW car financed fur $325 a month :-)

> You get more for your money this way. Hope this helps

>

> 7/18/05

> 280/210/140

>

February 8, 2006

Thanks so much for all the tips. We have 8 days until we fly to San

Diego. We have never even been on a plane. We leave from

Fayetteville, Arkansas early in 2/16. We are both looking forward to

the trip. Now it seems like I have to find things to keep me busy -

just to help the time go by. It seems like once I finally made the

decision that I'm impatient to get on with it. I'll let you know

afterwards but I'm confident that everything is going to go great.

Regina //So now my decision is do I spend

> > double the amount and have a $325

> > monthly payment? Or do I sell my car and pretty much pay for it

all

> > that way and go to Mexico? //

> >

> > ,

> > Here is my suggestion. If you can get surgery financed then you

have

> > pretty good credit. I would sell the car to pay for the surgery

in

> > Mexico then have a NEW car financed fur $325 a month :-)

> > You get more for your money this way. Hope this helps

> >

> > 7/18/05

> > 280/210/140

> >

October 11, 2008

Hi Barbara,

Do you remember how many months your daughter was on the Rifampin?

I have a son who also tested positive for that and has extreme OCD,

which is an anxiety-driven disorder, certainly. He has never been on

that drug.

Thanks,

Carla

1b.

Re: kids with lyme

Posted by: " Barbara Spaulding "

barbspaulding@...

?

barbspaulding

Fri Oct?10,?2008 5:42?pm (PDT)

Hi, I have two daughters with congenital Lyme but I live in Oregon so I

can't help with the support group but I have some ideas for you about

your daughter.? My eldest (11) deals with anxiety and mood swings too,

she also has Mycoplasma Fermentens which is a co-infection of Lyme that

often doesn't show up very often?in blood tests (lucky for us it did so

we could treat it).? The MF can cause extreme anxiety and can cause

children to become psychotic.? We see Dr. J too and he put her on

Rifampin for many months for the MF and it really helped with these

symptoms.?

?

We have taken them off antibiotics?couple times over the last 3 years

and each time we end up putting them back on.? Both my daughters do

better with the oral antibiotics than when they are off although they

have needed to switch meds over the years because I think they plateau

and begin to experience side effects instead of it helping (fatigue,etc.).?

?

My eldest is now on minocycline which crosses the blood-brain barrier

and her anxiety/focus challenges are virtually non-existent now.? My

youngest (8) is using the same and her memory challenges have improved

too.? Dr. J told us from the start the treatment would be 1-7 years, as

I said we have tried a couple times over the last 3 years to take them

off hoping that we're done with this but have found we've got to keep

attacking it.? Its so hard to see your child herx, my advice is to

start her very slow on any new antibiotic, build up to full dose over a

few weeks, and if at full dose she feels bad all the time back her down

to what she can tolerate.? Keep at it, Dr. J always says kids do get

over this and I choose to believe him! ? Good health to you and your

daughter! Barb

?

October 11, 2008

all of the tick bornes can trigger or worsen anxiety!! and when herxing they get

much worse--I had UNBEARABLE panic every time I relapsed or when starting abx

and yet without so much as a single antianxiety med they lessened then went away

with only abx!!!

Of course the drs ( inckluding the pschychiatrists) dont believe it.

Dont just count on any one drug, you need a good LLMD or other Dr experienced in

Lyme and the various [and now MANY] coinfections and test but also be aware

false negatives and so sx and sx patterns are more important to figure out the

other non-Lyme causes and try the appropriate meds for those!!

Some think sequential treatments others find taking several drugs at once

better--all different.Be careful with some more risky drugs..like rifampin and

plaquenil to name but 2--they have to be monitored carefully and even stopped

after a while for a rest. Theyre not as safe to take for extended time periods.

and be aware that some again like rifampin cant be started and stopped a

lot--somehow that triggers some reaction ( autoimmune, allergy???)

And the drugs themselves can trigger worse anxiety/OCD etc---hard to tell if its

the drug or the die-off but that again is a good reason to be releatively sure

you have the coinfections to begin with beyond the Lyme.Be aware some drug

formulas contain additives and colorings and artifical sweeteners too which will

possibly worsen psychological sx too.

always ask about the inactive ingredients!! and if there is an issue your

pharmacist can compound--make up a formula without those things!!!

and minocycline, its ototoxic--watch and do hearing tests--that drug took my

left side hearing (Im 80% deaf now) and my balance/inner ear too--hence the

vertigo ( which my luck is made worse by the neurolyme and the Chiari so

basically Im " lucky " the few hours a day when the world isnt spinning)

Finette

Re: [ ] Digest Number 543