LymeNet Flash: Progress report....Magic

LymeNet on Facebook

LymeNet on Twitter

Follow @LymeDiseaseNet

The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet 2020 fund drive

The Lyme Disease Network is a non-profit organization funded by individual donations.

»	LymeNet Flash » Questions and Discussion » General Support » Progress report....Magic

UBBFriend: Email this page to someone!

Author

Topic: Progress report....Magic

Bob054
Member
Member # 26027

posted

Hello again, I'm in New york, Ossining, having left Vermont by the full of the moon on Wed. nite.

Pam , my wife, under Rosepherine tx for 2 weeks now, daily. Like Magic! After suffering under the hands of the sadists/docs of VT, Pam is responding very well. She was "home-bound" the last two years.

Yesterday, she got up at 10am, Her neuro's are coming back, and she can already get back to reading.

She made her 2pm appointment, 25 mins away at one of the most friendyliest docs offices we have been to in the last 12 years. We were out of there in 20 mins, refuelled, without infusion invasion. They use a "butterfly" for injection, and humor for relaxation.

Then went to Knitting shop up the road in Katonah, more friendly people who directed me to the place "where the husbands go" (the A&P) while the wives chat and assist each other with knitting tips.
She was in there for an hour and a half.

We came home, to my mothers house, and then went for a walk, thats right, a walk, around my old swimming pond with the dog.

Today it's rosepherine at 11am, BBQ in afternoon at little sis's, and tonight Under our Skin presentation at Ridgefield Conn, with question answer period with good docs.

Homebound! Ignorance and oxycodone, Can't wait to get back to VT, and have Pam walk back into primary care office, less the Lymes, narcotics gained weight, and she is already researching cheapest physical/water/swimming therapy to lose weight and do her part....She is caring about herself again and smiling.

Next week we are attending the Great Hudson River revival Music concert, at a difeerent location, but it was 21 years ago that we attended same in Pleasantvill NY, and the next day found the Tick between her toes. What a long, long trip.
Wish I had the money to open up a house down here and assist folks in getting the treatment and respect they deserve. Sorta like a "Bed and Breakfast" that re-opens endless possibilities, instead of dead-end ignorance.

Will continue updates and thrills and spills.

Bobby

Posts: 24 | From Vermont | Registered: May 2010 | IP: Logged |

Lymetoo
Moderator
Member # 743

posted

That's awesome, Bob!! So glad she is responding so quickly to the Rocephin. Are you the one who was going to move so she could get infusions??

If so, I'm glad you figured out how to do it without moving!!

[woohoo]

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 96222 | From Texas | Registered: Feb 2001 | IP: Logged |

feelfit
Frequent Contributor (1K+ posts)
Member # 12770

posted

Wow Bobby, that's quite a story! Your wife homebound for 2 years and now amongst the living!!

How wonderful that must feel to her and to you who obviously loves her very much!!

Wishing the BOTH of you continued success on the road to recovery....

Just awesome,
Feelfit

Posts: 3975 | From usa | Registered: Aug 2007 | IP: Logged |

Bob054
Member
Member # 26027

posted

Yes, I was the one thinking about moving. Its still up in the air, but may become a priority.

Although "quick reponse" is great, sights are still long range, with rosepherin and other

oral's being added, could be long term. But for today, it's great to be able to have a

conservation and be out of the house.

Went to screening last nite, with "Q&A".Docs at

meeting said they are not afraid to have names

announced and answered all our questions.

In attendance, Dr. Ray Jones, now 82, the doc

from the movie treating adol., accompaning him

was the young ballerina from the movie, now

studying to be a doc, Dr. Steven Phillips, and

Dr, Ken Liegner.

Asked about advancements, one doc said I have

been fighting this for 15 years, not afraid to

take on the ins, med boards, and Resarch to

treatment has gone from BAD. to Crappy. No

funding, no advocacy, little advancement. Doc

Jones said he is still practicing and will

continue untill he dies, and that the lgeal

wrangaling, will still be going on over his case,

long after he's gone, but he will continue to

make a differance untill then.

New Knowns and Unknonws, Lymes can be passed

through pregnancy, however if the women is being

treated for lymes the baby will be ok. Sexual

transfer still up in the air. However it can be

transferred through breast milk, but if the women

is on treatment (correct treatment) it may be

safe. Also may be transfered through urine. Don't

let anybody pee on you, Lots of jokes about lyme

illiterate docs after that one.

My question, "in order to advocate, how can a

spouse, caregiver, find the time, assist in care,

without support for themselves, and write, speak,

etc to advocate without the rage, and anger that

turns people off?"...Best answers were we need a

"Famous" spokesperson, on shows, commercials etc,

or develop a group like "ACT OUT!" who advocated

for aids.

Docs advice, stay focused, since research is

minimum, what the patient presents to the doc is

what they have to go on. So stick to the basics,

if you think eletro magnets and kozmic dust is

kooky, don't try it, don't waste time and money

on herbs and such as it may feel good at the

time, but theres no valid eviedence that it makes

you better. The way they find these things out is

by patients reporting to them the avenues they

took that didn't work. So basiciy, the patient is

the researcher, and the docs above have proven,

medically accepted evidence that thier methods

work.

Very good evening...To see the ballerina, now 20

years old, walk up the stage, her 82 year old

doc, cane in hand, with three men helping him up

the three steps to the stage, and the fight,

honesty and determination of these docs and the

full house of suppotive Lymes disease victims,

was totally inspiring.

GET THE WORD OUT!!!
Bobby

Posts: 24 | From Vermont | Registered: May 2010 | IP: Logged |

dmc
Frequent Contributor (1K+ posts)
Member # 5102

posted

bumping up for Bob

great summary of the Q & A

Thanks for posting.

May your wife continue to heal.

Posts: 2675 | From ct, usa | Registered: Jan 2004 | IP: Logged |

Lymetoo
Moderator
Member # 743

posted

That was great, Bob. Thanks so much for the report!! [Smile]

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 96222 | From Texas | Registered: Feb 2001 | IP: Logged |

lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561

posted

I hope your wife continues on the upswing. You've been a blessing to your wife through this. Wish I would have made the ridgefield viewing. My son was a pt. of dr. J. for 3 years. He is doing well and has been off antibiotics for nearly 3 years. He's 15 and I love Dr. J.

--------------------
He took u to it, He'll you through

Posts: 2837 | From NE. | Registered: Apr 2007 | IP: Logged |

Printer-friendly view of this topic

The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:

The Lyme Disease Network of New Jersey
907 Pebble Creek Court, Pennington, NJ 08534 USA
http://www.lymenet.org/