I wonder if now he and his wife could be wondering whether she actually has Lyme and perhaps that explains his interest??
Posted by lpkayak (Member # 5230) on :
not sure what you are saying-but my attacks are aimed at the article that is full of lies
its hard to educate ppl about lyme when that kind of stuff is published
if anne doesnt think about lyme in relation to ms she would not be able to ignor it as a horse person... ticks are a major problem for horses altho the testing and treatment seem to work better for horses (like dogs) than ppl
Posted by beaches (Member # 38251) on :
As far as dogs, I wonder how and why they can be diagnosed and treated so much more aggressively than humans.
Don't know much about horses. But if she's a horse person, it's puzzling that she wouldn't connect the dots. But then again, denial is a very powerful thing especially if/when your "expert" doctors are espousing the IDSA dogma.
I just wonder why people are so willing to accept anything that doctors tell them.
Posted by dbpei (Member # 33574) on :
These articles are so upsetting to read. I signed Paul Mall's petition for an apology, but not sure it will matter with the mentality out there...
I appreciated some of the replies and wrote some lengthy replies to a few of those articles written by ill informed journalists, but ran out of steam. I am saving my energy for healing now. Glad others are doing what they can though.
Posted by RDaywillcome (Member # 21454) on :
Well, her husband's doctor is out of MA General and our famous doctor that discovered lyme disease in CT also is out of MA General and one of her sons is a doctor in Boston, so I think they probably exhausted all the thoughts of lyme disease.
Posted by lpkayak (Member # 5230) on :
ive been hearing very troubling problems about boston hosps and lyme lately. not just on here. afriend is in very bad shape with lymphoma and lyme---Bb found in spinal fluid
the difference in dogs and ppl can be genes...we know genes play an important role in how we react to Bb and tx
i have talked with many vets about this-they are as confused as anyone...just glad they have tests and tx that works
my question about testing is how come guys at war in the field have a little instrument with them that tells them if they got Bb so they can tx immediatly
if something like that is available why is it so hard for us to get good test results
dbpei-good thinking. rest.
i still think our best bet at a professional reply to the articles is Pam.W....maybe she is working on something as we speak. i hope shes not sick again. if it comes from her it will be correct and respected. i wonder who could talk to her. phyllis maybe?
Posted by map1131 (Member # 2022) on :
Makes me sad to still see the lyme ignornance in the Northeast after all these years. No thanks to the power of ID society.
It's make me realize how much harder/longer the fight in Ky is going to be.
Pam
Posted by IMHisda (Member # 6998) on :
I did send an email to Gov. Romney about the possibility of Ann having Lyme instead of MS and explained I know someone that tested positive via brain MRI for MS then was treated for Lyme and the sclera on her brain actually went away. Explained the other good Lyme tests etc.so hopefully they are fully ruling out Lyme on Ann's MS Diagnosis.
Posted by grandmother (Member # 19908) on :
Why have we NOT served idsa with a class action suit?
I'm a little slow these days so, if someone knows why, could you, please, explain it to me?
Posted by AuntyLynn (Member # 35938) on :
Grandmother -
Yep - my thoughts exactly! A class action suit is LONG Overdue!
Tried to get something started on a State Lyme Board.... get this ... the owner of the Board wrote me privately that I should take the discussion ELSEWHERE!
(Guess they didn't want to get in the middle!)
Posted by AuntyLynn (Member # 35938) on :
Wow JCarl - Thanks for alerting us to this piece of editorial tripe!
I hope the New Yorker draws and quarters this "reporter" for his obvious bias, and a complete lack of due diligence!
It's clear that the only research this guy followed was along the poltical path - pointing fingers at the religious "source." Well heck, TBDs affect Christians, Jews, Muslims and Atheists alike; and yes, even Mormons!
This writer has turned a medical controversy into political tripe - and as someone who tends to lean left of center, I find him to be a disgrace to all thinking liberals!
[ 10-05-2012, 04:14 PM: Message edited by: AuntyLynn ]
Posted by C.P. (Member # 38378) on :
I like the idea of a class action suit. Does anyone know if any legal measures have been taken to help Lyme patients? C.P.
Posted by AuntyLynn (Member # 35938) on :
None that I know of C.P.
First thing to do is to find a law firm that would be willing to take the case on speculation. I know a firm in PA was approached a few months ago, but never got any feedback on the results of that meeting. So presumably, it went nowhere.
IMHO, this is a case that may have "deep pockets" with the potential for some major damage$$$ The IDSA boasts that is has over 10,000 members - all of them doctors - what does that translate to in annual "dues?"
Surely, those with TBDs have suffered massive personal losses - in lost income, lost homes, lost relationships, and plenty of "pain and suffering" - including even "wrongful death."
And I'm betting that the IDSA would MUCH RATHER change their insipid treatment guidelines, than be forced to recompense the massive losses that their policies have caused to thousands of Lyme victims.
In reality, we have been victimized TWICE - by the disease, and by the arrogance of the IDSA!
Maybe we should be talking to a high profile ambulance-chaser like John Banzhaf, III, Esq. He's the attorney that arm twisted Big Tobacco into joining his "Master Settlement Agreement" scheme with the States (who he recruited as his Plaintiffs). But whether you can sue a "non-profit" for damages might be an open question. Obviously, former CT AG Richard Blumenthal thought the IDSA was "fair game."
Banzhaf REALLY LIKES the BIG BUCKS associated with corporate liability issues! He has even created liability issues, when others have seen none. He is notorious among the giants of Big Biz, as the "Prince of &%*ing Darkness."
Posted by lpkayak (Member # 5230) on :
years and years ago there was investigation into the class action thing
at the same conference there actually was a lawyer offerening to represent individuals
it did not last long at all.
i felt like the drug companies, health ins , real estate all sent their hitman out to that lawyer and he shut up fast.
not sure what really happened. it was a long time ago...i think tincup was there...she might remember better than me
also...maybe opti-mis-tic? it was a long time ago
Posted by lpkayak (Member # 5230) on :
part of the reason a class action wont work might be cuz in court they would have to show the facts...and the facts just arent there
it would just be a fight ilads against idsa
they both have their studies...but there is not one standard of care
Posted by beaches (Member # 38251) on :
Think about all the endemic/epidemic areas like Cape Cod in MA, N. CA wine country, Hamptons in NY, just to name a few of many. These are major tourist spots, which equal major bucks.
I don't think for a minute that any class-action lawsuit would prevail in states with areas that draw so many tourists and their money. I wish I was wrong.
Posted by C.P. (Member # 38378) on :
Are there any members on this network who are lawyers with class action law suit experience? There are so many of us with the same stories, some worse than others, and the same experience with the medical establishment. We can't even give out doctor referrals without using initials and acronyms! It's a crime that we have to live like this because of the "powers that be". How many members use this website? If we all organize, I think we can make a difference, even though we are so very sick and have no energy. I'm going to do some research. My husband is a lawyer but works for a small firm, so I'll ask his advice. C.P.
Posted by AuntyLynn (Member # 35938) on :
Beaches -
Sorry but I don't follow the logic of your comment.
Posted by AuntyLynn (Member # 35938) on :
C.P. -
It would be really interesting to get your husband's informed opinion. Thanks!
Posted by AuntyLynn (Member # 35938) on :
Ipayak -
The fact is, too many got treated as per the IDSA "standard of care" and are still SICK! There is plenty of proof of that!
Posted by lpkayak (Member # 5230) on :
i believe beaches (correct me if im wrong) is referring to the value of real estate
i lived in ct and the hudson valley ny when they were endemic and there was a huge push to hush up the tick problem because land values would fall and houses wouldnt sell. they didnt even want us to post "be careful of ticks) in parks. it took yrs to do that...
some of seacoast areas make most of the years money in 2-3 months in the summer. the tourists wouldnt come if the places were known for many ticks
no one wants ticks in their backyard and back then it seemed popular to pretend they werent there. i remember so many things that happened.
i hear what you are saying auntie and i remember when i thought like you...it was a hard lesson to learn that money and drug companies and insurance compaies are more important than the truth that hurts us---
i didnt see things start to turn around until the doctors got lyme and their close personal friends got lyme and their children and spouses got lyme. THEN they paid attention. it was harder to write off the crazy ppl coming in that the docs told it was all in their head cuz they had never seen it b4 when it was a friend they knew for many years they believed. and that was the start of llmds and ilads.
CP-i would like to hear what your husband says but i have unfortunately had my share of legal stuff in the last 10 yrs and it isnt as easy as some think
anecdotal doesnt fly. it has to be real 10 yr double-blind studies and expert testimony. ilads is new and labled rogue. it will be harder to get a judge to listen to ilads than idsa, ama, cdc etc
we have a few studies and llmds like oops...almost said the names-but F and L for sure and there are others. these llmds are trying very hard to put good studies together.
studies that will stand up-but it takes time.
unfortueatly im pretty sure the following is not the kind of "fact" that would stand up in court...
"The fact is, too many got treated as per the IDSA "standard of care" and are still SICK! There is plenty of proof of that! "
i hope you all know i am on your side...its just i have lived this. i was 15 yrs trying to get a diagnosis and i knew what i had...because of one little old lady who put up a table and sign and homemade flyers about ticks and lyme at the grocery stores. i dont know her story-she must be gone by now. i dont know if she was sick or if she had lost a child. this was in dutchess county ny in the 80s and 90s.
so i knew but the fight it was to get dx and i backed off trying cuz it was so hard but when my kids got sick...i did turn crazy until i got them dx and treated and then they finally dx me.
i do wish there was something legal but what i saw didnt work. and i do see the top ilads ppl continuing to get their ducks in a row with good studies . slowly it is changing. if a legal thing could help dont you think blumenthal would get it done?
i wish some other oldies like me would come by and chime in...im sure they remember stuff like i do. half my life now i have been living with lyme-all my kids . grand kids and some spouses too.
change comes slow when money matters
Posted by AuntyLynn (Member # 35938) on :
I can relate to the Real Estate thing Ipayak. In fact, the only tick bite I can remember getting, was on Nantucket Island in the early 80s.
I am 1000% certain that my conniving siblings who emptied my mother's house secretly and put it on the market never told potential buyers that the owner got 2 tick bites on that property, and was now living in a "memory care" unit!
I'm so sorry you had such a tough time - but I can definitely relate - like you, my Mom went from doc to doc for 15 yrs before getting diagnosed.
I think Senator Blumenthal is doing the best he can right now - which is a lot more than any other politician has managed to accomplish for Lyme victims so far. But, as a career legal secretary, it's been my observation that nothing seems to get a quicker response than to "sue the b*st*rds!"
Posted by lpkayak (Member # 5230) on :
maybe you could come help me with my mold case in your "sparetime"
i could use and insider in the legal profession
i bought a house with no heat and got laughed out of court
now i bought a house with mold...and im having a hard time
Posted by beaches (Member # 38251) on :
lpkayak, thanks for clarifying what I meant. Aunty Lynn, the real estate thing is what I was referring to.
And when you think about it, so many endemic/epidemic areas just happen to be hot hot hot tourist spots - like Nantucket where you and your mom? got bit. (Sorry to hear about your siblings BTW. I can't even imagine).
Granted, Sen. Blumenthal has done more than his fair share advocating on behalf of Lyme and bless him for continuing to do so. There are others out there too-- I think reps in MD and Schumer from NY have done some things as well but I can't recall what at the moment.
I agree totally, sue the b-----ds! I wish there was some way to do that. But I don't see it happening anytime soon with IDSA still being held to such a high regard by so many and the CDC not emphasizing strongly enough that the number of cases of LD they report are actually tenfold and that Lyme Disease is a clinical diagnosis.
They've stated these facts on their website in the past. So how come no one else but patients apparently get it? Yet another frustrating aspect of this DD.
lpkayak, so sorry to hear about your mold problem. We had it too. Cost us megabucks for remediation. And now we have another leak from the roof so I wonder if we are living among the spores once again. Hope you get some help with this problem.
Posted by dbpei (Member # 33574) on :
I came across the most powerful testimony from a woman in PA, who must have testified a year ago. It brought me to tears. Powerful stuff.
I posted it in lymenet under activism, but I have a feeling it got overlooked - as not one person responded. Take a look when you can. It is testimony like this that we need to make change happen.