lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Public hearing on HB 798, Lyme and tick borne disease education-Main Capital rotunda. Room 140. 1pm.
Come to hear testimony from, reps from PA Health Dept, Dr. Roger Neiman, Pat Smith, Ron Hamlen, 2 llmds, 2 patients.
Sorry about the short notice. Parking is not great and you will have to go thru security. lmt For extra info, contact lymepa.org
Posts: 2360 | From SE PA | Registered: Mar 2004
| IP: Logged |
cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Anyone know how this went?
I couldnt make that long of a drive.
I hope it went well.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
| IP: Logged |
lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Can't, I think it went well.
The Health Dept didn't even know about Bartonella existing, let alone now overtaking Lyme in our part of PA., so that was depressing. They want more committees, well they need to get up off of their duff and get education out there. I was not impressed by them at all. I think the #2 Health Dept man of the state did most of the talking and also walked out soon after his presentation..But he was against part of the bill.
The ID Doc was of course a DUCK. The tests are fine, the magic two weeks to 4 weeks max of ABX is fine...blah, blah..YOu know the routine. He also left immediately after his presentation and there were others to present. Very rude and he was unwilling to listen to another point of view, I guess.
Pat Smith was outstanding and I have heard her before. She was definitely on her best. She had everyone on the legislative side listening to her every word. Some nodded in agreement. She was powerful!!!
We also had two llmd's (Dr. B and Dr. C) that did a great job but the legislators seemed to be nodding a bit. They did not seem to be as interested in the medical nitty gritty. With short presentation times, some remarkable info was passed along. Kudos to these presentors, for their time, travel and contributions.
I was a bit disappointed that some legislators came late and a couple left before the presentation was over.
They made sure we knew we had to be out of the room by 3..What a great schedule they have.
A father and a female patient also had a good presentation. That added a feature to the presentation that was difficult to refute.
One of the legislators made some positive comments about his area being heavily infected. Another asked a few tricky questions but was great when his final question of would we be here is this was infectious? Of course the llmd had a great answer and it became obvious he was on our side. Later we discovered he had a personal issue with the disease and did seek help from the llmds who were in attendance.
Mr. Phillips was wonderful and is continuing to push his fellow legislators to pass this bill.
I did not do a head count but I think it would have been less than 30. However with short notice, I think that was a fair number. lmt
Posts: 2360 | From SE PA | Registered: Mar 2004
| IP: Logged |
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Thanks lymemomtoo for the update
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
| IP: Logged |
bettyg
Unregistered
posted
lmt, great feedback!! glad you all could attend.
IP: Logged |
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
The health dept in CA is in the dark re Bartonella too. In Sacramento when our LDAC met my angel LLMD brought up Bartonella and they rousted him saying it was not proven to be tick TRANSMITTED even though tick borne!!! He was up against a bunch of NINCOMPOOPS! It was strange. Public health can be a very mysterious field...
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
| IP: Logged |
cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Thanks for the update, it sounds like it went well.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
| IP: Logged |
posted
I have to add my 2 cents to what Lymemomtoo said.
I felt that the Dept. of Health seemed more supportive of "our" side. They conveyed that Lyme is a BIG problem in PA, especially S.E. and south central PA.
Whereas the partyline ID duck that was there, said nothing specific. Went as far as to say that ILADS was treating based on "testimonial" not EVIDENCE BASED MEDICINE!!! - GRRRRRRR
All in all he gave a pretty sad, badly flawed testimony. If I were a member of IDSA I would have been embarrassed.
He also said Bb is "extra-cellular" and can be quickly wiped out ..... Obviously he has not read ANY studies showing that it is still present many months and years after treatment.
The state health dept. even admitted that the current rate of infection is way above normal and that the current rate was about 30 per every 100,000. THEY KNOW THEY HAVE A PROBLEM. The goal will be to reduce it to below 9 per 100,000 under a new program called Healthy People 2010.
They had a working Lyme taskforce that only met once, in May. There were no meetings the rest of the Summer; no reason given.
However at the hearing on Friday they committed to having 2 more meetings.....the next of which will be a public "expert" testimony hearing. The 3rd will rap up our recommendations and these will be presented in writing to the Secretary of Health for action.
They also revealed that they had applied for a grant for CDC money to be used for a Lyme taskforce group and to study long term treatments.
When asked by a representative as to what their take on the bill was.....the only reply I remember (cause I wrote it down, maybe there was another comment??) was that they felt that they could take care of some of the issues in the bill i.e. - educating the public and doctors on treating and diagnosing Lyme disease. They did not say they were against the bill. Another positive in my book.
It was obvious there were a few well educated representatives by the questions they asked: What are the most common misdiagnosis given to patients that actually have lyme?? Discussion of coinfections!! YES - some of them actually knew the names!!!
One of the representatives asked the Dept of Health about treating lyme for a short period of time (forget how specifically worded).
They replied early treatment is most beneficial but that it was NOT a question of NOT treating in the later stages or chronic form. Antibiotitcs were definitely of benefit in treating later stages of Lyme disease. I thought that was pretty awesome that they came out and said that!!!!!!!
They were not spewing the IDSA party line!!!
Pat Smith also had some great pointers. The first and best was that she mentioned the Johns Hopkins study that stated the tests we use now only pick up 20% of Lyme cases.
She also said that in our country animals for the grocery store are fed tons of antitiotics and gee maybe that is part of the problem with anitbiotic resistance!!!
Dr. C was awesome!! She relayed the story of her son, and how she could not find the cause of his illness for several months.
She stated that 80% of her pediatric practice has coinfections. Also that IDSA contradicts itself, and gave several quotes from Steere & Dattwyler. If only the ID duck would have stuck around to hear that; he MAY have learned something!!!!
Dr. B was also dynamite as usual. After his testimony, he was asked a question about long term treatment. He responded "Well it's like cancer. Some people get better with an initial round of chemo and treatment. Others do not, so we go on to treat if it is expected that they will improve. Why should Lyme disease be any different??"
He also mentioned pneummonia as an illness requiring varying lengths of time to treat. Some can be treated at home and get better in a matter of days or 2-3 weeks. Others are so sick they must be hospitalized for treatment and require long treatment. Others also die from it.
Ron Hamlen also spoke from the LDA SEP and unfortunately had to shorten his original testimony. He stated that in 2005, PA was #2 in the U.S. for highest number of cases.
One patient told her story of how she was sick for a number of years and saw many doctors for extreme back pain, light headedness, anxiety, panic attacks and many other debilitating symptoms.
She asked one i.d. duck about her continual fevers she was running. He replied, (i kid you not!)...STOP TAKING YOUR TEMPERATURE!!!
Another testimony was given from a father, whose son contracted Lyme & Babesia as a teenager. It took 5 long years, and depletion of all their savings while his wife worked to support them. He stayed home (farmed when he could) and took care of his son.
He did go to college and graduated #1 in his pre-med class from Penn State!!! He was accepted at 7 med schools, but is at Johns Hopkins right now studying to be a pediatric oncologist!!!! There was not a dry eye in the house.
MANY, MANY thanks to both doctors, Pat Smith, Ron Hamlen, Mr. Peters, and Tresa for their time and testimony. I know I've missed many other great details, but have to stop here.
The Health and Human Resources committee stated at the end of the day that there would be another public hearing. We will keep you posted. I hope we are given more notice next time.
p.s. - thanks Lymemomtoo for coming to the hearing and posting for others right away. Please feel free to add to anything or correct me.
Gail
-------------------- Strength does not come from physical capacity. It comes from an indomitable will ~ Gandhi Posts: 562 | From Wellsville, PA, USA | Registered: Jan 2004
| IP: Logged |
bettyg
Unregistered
posted
thx gail for your details also; sounds very positive. best to you all.
IP: Logged |
valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
Thanks for all the information. My friend is a counselor at a southeastern PA highschool and there have been too many suicides in the past three years. She is becoming interested in finding out if there is an infectious link.
I am going to send her your info and then encourage her to get in touch with Dr. C. or Pat Smith or Sandy B.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
| IP: Logged |
lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
VA mom, my daughter has made 16 attempts that I know of. A few days ago we were talking and she said you will never know them all...
She has Lyme, Bart, diabetes(after the onset of LD)OCD, plus a basket full of others.
Lyme and Co's can cause brain damage. I have the brain spect scans to prove it...So yes these infections can provoke teens to attempt /or commit suicide...
My daughter would have spells nightly for a year when she was out of her mind. But the attempts were before, during and after this year.
She was in such pain and anguish from being so ill and different from others and unable to do anything that suicide was her hoped for end to it all. I have heard that many teens go to alcohol and drugs to self medicate.
No one knows what is wrong with them and they give up..lymemomtooo
Posts: 2360 | From SE PA | Registered: Mar 2004
| IP: Logged |
kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
lymemomtoo, is she doing better? I remember when she was going through this.
My daughter had suicidal thoughts, as well. Mepron was very difficult for her.
She is now taking one ON CAMPUS class of sign language at the community college.
Two years ago, she couldn't use her hands due to the pain!
She is still in pain (not her hands though), but she is open to taking something for it, so she can start to have some kind of life other than the sofa.
Thank you, thank you for attending and reporting.
I wish they would come out our way!
Posts: 2903 | From AZ | Registered: Feb 2006
| IP: Logged |
lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Kelmo, it has been a long path for us but we have had a safer and more hopeful time of it since her LLMD recommended she go to a clinic for brain damaged patients.
WE were there for 3 days and they were so helpful. We could see the areas of brain damage and the Drs have a great deal of positive experience and are able to pinpoint meds that are appropriate. We wasted much time and money with meds that were of no use or that may have been detrimental.
Since the second day of new meds and protocols with supplements and food, there has been much improvement. She is far from 100% but I would settle for less as long as she has climbed out of the deep hole.
She takes a med called abilify, cymbalta, a super multi, an omega oil, a brain supplement, extra mineral supplements, and is on a partial South Beach diet. When she is strict with it, she is better.
Good luck with your daughter. Hope she finds some pain relief. At my daughter's worst, she received no relief from anything. lymemomtooo
Posts: 2360 | From SE PA | Registered: Mar 2004
| IP: Logged |
pmerv
Frequent Contributor (1K+ posts)
Member # 1504
posted
This is an encouraging sign of progress but you will have to keep the pressure on to make sure the ball goes into the basket!
I hope those of you who live in PA will share this news with the folks on PennsylvaniaLyme and maybe gain some new allies there who can help in the fight.
posted
Hello! My name is Leslie. I was quite active on this forum from 2003 until about 2005. I am using my free time more locally now but will begin coming around more often now that I have a computer again
I'm from the Harrisburg area and my friend Becca and I attended on Friday.
Gail, you summarized the day beautifully -- saw you taking lots of notes Thank you for all you do.
On a personal note it was a pleasure to get one step closer to actually meeting you in person my dear! We've emailed occasionally over 3 years, a phone call or two, missed each other at support group meetings (nuts!) and it was great to finally see ya! Unfortunately, we had to rush out of the meeting, otherwise would've loved to chat in person.
Anyhow, I only wanted to add that I left feeling cautiously optimistic! Our side was passionate, well-spoken, effective, educational, AMAZING!! The patient testimonies were extremely emotionally effective and very moving. They truely painted the picture of the long-term agony that lyme patients and their families experience.
When I first arrived I was sitting 3 seats away from the IDSA duck and didn't know who he was at the time. He was a little, squirrely man, fancy suit, legs crossed, arms crossed the whole time AND HE HAD HIS HEAD DOWN AND WAS SLEEPING!!!! I wondered who this jerk was and when he got up to present his lies I realized he was an IDSA representative. grrrr! And he did leave immediately after his testimony. Rude.
Hi Lymemomtoo! Were you sitting in the very last row, middle?? I thought you looked familiar. We met on the bus to the Reading lyme fundraiser. Glad to see you are still active here, helping others. Glad to hear of some improvements in your daughter.
I was so proud of all the speakers. They absolutely made the most of the day and this chance to educate.
I'll be at the next one. Anyone from far away may contact me here and I will put you up for the night if there is a need.
Take care all. Leslie
Posts: 340 | From Harrisburg, PA | Registered: Jun 2003
| IP: Logged |
lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Hey fish..Yes, I remember the trip to Reading. Thought we would never get there or get home. I was sitting to the right of the legislators. There were two other ladies sitting behind me.
We kept trying to get copies of the presentors testimony. Actually they (ducks) snuck one in for a DR that was not there. Very slimmy move, think it was also to confuse the legislators since the contributor had a similar name to one of our presentors..
I had my trick or treat for lyme bag, lime green that I flashed from time to time. Mostly used it to fan myself when I was fuming over the ID ducks presentation.
I would have given it to him as a gift but he left so quickly. Maybe he was afraid of us..lmt
Posts: 2360 | From SE PA | Registered: Mar 2004
| IP: Logged |
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,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[kiss]](graemlins/kissing.gif)
![[group hug]](graemlins/grouphug.gif)
![[Big Grin]](biggrin.gif)
![[cussing]](graemlins/cussing.gif)
![[shake]](graemlins/shake.gif)
..... Obviously he has not read ANY studies showing that it is still present many months and years after treatment. ![[woohoo]](graemlins/woohoo.gif)
![[bow]](graemlins/bow.gif)
![[bonk]](graemlins/bonk.gif)
![[Smile]](smile.gif)
Printer-friendly view of this topic