I know this probably will be moved to general support and the obituary column -- but it raises some very very important issues that we all need to think about.
What caused Sean's ALS? -- Was it pesticide exposure from the heavy flea treatments? Was it Bartonella from flea bites? Was it Lyme?
Would IV antibiotics have saved his life?
Everyone has a right to chose their own course of treatment -- but this is one of the most glaring examples I know of that shows how little we know and how badly under researched lyme and tickborne illnesses are.
Would a SPECT scan have provided meaningful info to guide treatment and diagnosis?
Did the herbs and Rife treatment totally fail or was that treatment just inadequate for this level of debility?
So many unanswered questions........
But the bottom line is the medical system failed this patient and a large part of that failure was due to lack of money.
As a community we have got to do more. There are just too many people slipping thru the cracks. I don't know what the answer is but something has got to change.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Bea,
I did not see all the details you mentioned but got a thumbnail sketch. Very sad.
Why would he have gotten heavy flea treatments?
I don't have a FaceBook account (and don't want one) so that is perhaps why I did not see the page you described.
I did see someone list specifics about rife. Those companies will not be in jeopardy. Sadness on top of sadness with this disease. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
Keebler -- I don't have a facebook account either -- not needed.
If you go to the page I linked at the very bottom it has pages 1, 2 and 3. And then many of the individual entries have more details when you click on the "read more" buttons.
On page 3 there is some history which includes the fact that the house they lived in had a bad flea problem and the ALS symptoms appeared after Sean treated the house numerous times over several months for fleas. His girlfriend or companion was not living in the house at that time so her exposure would have been much less if any.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Thanks, Bea.
At least from page one, I could sure feel the love for him. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
See recent obituaries and click on the name on the right -- d. Aug 30, 2010
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
One thing we can do is support the laws that need to be written to allow doctors to treat Lyme as they see fit, instead of being stuck with the limited IDSA guidelines.
I know that we took a bus from northern VA to Richmond last February to support this, but it got tabled until next year. Many states are trying to pass these laws, and a few have already been successful
Another way is to encourage your House and Senate members to support federal laws for Lyme.
I know that Richard Blumenthal in CT is running for Senate and Lyme is one of his big causes. He feels he can do more on the federal level, that there's nothing more he can do at the state level in CT.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
| IP: Logged |
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Bea,
This is so sad indeed. I am also a little confused as to the cause of death. It said he aspirated on some food and got pneumonia which was the immediate cause of his death.
He was also exposed to heavy chemicals from trying to get rid of the flea infestation he had. I understand that his ALS symptoms didn't appear until after the chemical exposure.
My mother passed away from so-called ALS.(positive she had Lyme because of her symptoms)The ALS symptoms came on after she fell.
Trauma to the body can cause a cascade of the immune system to fail even with appropriate tx whether it's abx, or alternatives or both.
Being poor and sick with inadequate treatment and not the correct dx is for sure not a good combo.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
| 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!
Printer-friendly view of this topic