Pesticides

[mlb]

Hi Paty,

Here is an internet site where you can read all about pesticides, their uses and their effects

http://www.epa.gov/pesticides/about/types.htm

Unfortunetaly to get a doctor to agree that your husband's ALS is caused by pesticide exposure will take some doing. Most doctors go by the book. If your husband's tests did not reveal any poison in his blood, then they will conclude that it is NOT pesticides the cause. speculation on their part does not come into the equation.

Why not ask the opinion of a doctor that treats Veterans.. They could help you as they deal with similar situations.

Good luck.
Anna

 

[Paty]

Hi ANNA (mlb)

Hi Anna:

Thank you again for the link about pesticides, the problem I cannot contact a Veteran's Doctor because although I am in the border of U.S.A, I am on the Mexico's side, I am from this country, but since here we don't have information available, one day looking for answers I got to these wonderful Support Forums.

I will go to the link and will place it on Favorites, since I don't have much time, since I am my husband's only caregiver (24 hrs. a day).

I'll keep in touch.

Paty
Husband's Caregiver
Baja California, Mexico

 

[pye101]

This thread really caught my attention. My husband was diagnosed with ALS following chronic, low dose, exposure to Dursban (chlorpyrifos). His neurologist diagnosed him via his extremely low cholinesterase levels. We fought a legal battle to attempt to gain some attention to the possibility of a connection between organophosphate exposure and development of neuromuscular disease but it was nearly impossible to get any interest generated by the medical field. None of the other doctors who examined him would even entertain the possibility of a causation of toxic exposure. I really became tired of listening to the litany "we don't know WHAT causes ALS, but we're sure it's not organophosphate exposure".

John was diagnosed in late 2002 and passed away in September of 2005. It was a frustrating experience to see that none of the doctors were willing to venture "outside the box" and basically were not really that interested in what possible causes there are for ALS. They simply prefer to make a clinical diagnosis, for the most part, and then walk away.

I truly believe that his illness was caused by his exposure and possibly there was a genetic component involved as well. As in some cancer patients, there is a type of predisposition to developing some cancers and I believe they will find this same component is active with the development of ALS.

I pray that you are more successful and please don't hesitate to write to me, if you need any kind of emotional support.

hugs,
Susan

 

[Mike27]

Hi Susan,
Welcome to the forum!

What caught my eye about your post is this:

None of the other doctors who examined him would even entertain the possibility of a causation of toxic exposure. I really became tired of listening to the litany "we don't know WHAT causes ALS, but we're sure it's not organophosphate exposure".

How can they say 'they don't know the cause' and then rule something out?

There is definitely a school of thought that exposure to different chemicals may play a role. I think it's pretty assinine of the Neuros to just rule it out. I'd love to see what science they based that decision on.

 

[Al]

Rocket science Mike! You know those guys are all rocket scientists Mike. LOL
AL.

 

[Paty]

Hi Susan

Hi Susan:

I am positive sure that my husband A.L.S. has to do with ORGANOPHOSPATES PESTICIDES, (HE WAS A DUSTER PILOT FOR 23YRS.) All the Neuros he saw here in Mexico didn't pay any attention to this, since he had stopped dusting in 2000, they said it had to still be in his blood, to blame them for his A.L.S. that started showing symptoms around April 2005, (at this time I saw that his shoulders looked weird, he was always a slim person he took care of what he ate, and suddenly I wanted him to go to an Internist because the shoulders looked bony, and he had pain in one of his arms, by June he told me that when he walked to get the newspaper, he felt his left leg would not caught up with him, it would stay behind, he started with fasciculations in his back, things started to fall down from his left hand, etc. etc.
It was until early Oct. 2005 that he went to a Neuro, that had been my son's teacher at the Medicine Faculty, after some testing MR> EMG, he was DX by him with A.L.S., but since my daughter wanted a second opinion my son took him to CIMA hospital here in Mexico, more tests were done, but they didn't give a DX.
At this time he is in a hospital bed, in Jan. 2006, his started slurring and right now he can barely speak and we can only understand a few phrases, his arms are useless, and he can't use his legs, he eats by mouth (refuses the PEG) he still has no problem breathing, doesn't use a BiPap either.

I SURE BLAME THE ORGANOPHOSPATES HE APPLIED FOR 23 YRS. (THIS IS SPORADIC A.L.S. nobody in his family has had this disease, in fact they all have died very old, 96 his grandfather, 104 his grandfather's brother, his mother is 84 and very healty.
All the doctor's said that what ORGANOPHOSPATES cause is CANCER.

NOBODY CANNOT CONVINCE ME THAT ORGANOPHOSPATES WERE NOT THE CAUSE FOR HIM GETTING SICK WITH A.L.S, I remembered the time he got home and would tell me no to mix his working clothes with the family's since one of the hoses had broken and he got a shower of pesticide, of course he used to get his cholinesterase tests, don't remember how this came out.

ABOUT A YR. AGO I MET A GIRL WHOSE COUSIN'S HUSBAND WAS DX WITH A.L.S. THAT IN BARCELONA SPAIN, HE WAS ONLY 30 WHEN DX., (THIS WAS AT THE SAME TIME MY HUSBAND STARTED WITH THIS) HIS NEURO GAVE ME A CALL AND WANTED TO KNOW WHAT MY HUSBAND HAD DONE FOR A LIVING, (fernando an architect, had been in contact with RATICIDE, for a long time.

PATY
HUSBAND'S CAREGIVER DX 10-17/2005
BAJA CALIFORNIA, MEXICO

 

[pye101]

Paty, my heart goes out to both you and your husband. Even when you DO have a forward thinking neurologist on your side, it seems to be virtually impossible to open people's minds.

I have spent hundreds and hundreds of hours on my computer, following John's diagnosis and during his illness. I even contacted neurological research fellows in many foreign countries, who are researching the effects of organophosphates and other chemical toxins on human neurology. My understanding is, once the toxin damages the nerve - by demyelination - the stage is set and the disease process that ensues is identical to that of ALS. Apparently, they are seeing this in places like India. Acute exposure, that can be treated before the damage occurs to the nerve, can be reversed - or so they were thinking. Now, I understand that they are finding cases where damage continues many years after the initial exposure.

The neurologist who diagnosed John with organophosphate exposure heads up an ALS/MS clinic at one of the universities here in Florida. Even with his assertion that John's neurological problems were initiated by toxin exposure, we could get no additional attention.

In our normal, daily lives, we are all exposed to organophosphates. The government has assigned an "acceptable" level of exposure - which is supposed to be safe. However, I believe that while the majority of us will not be affected by casual exposure - some people will and those people will develop neurological diseases like ALS.

John's exposure was caused by the fact that he was carrying unopened bags of Dursban inside his work truck. The truck would sit out in the heat, with the windows closed, and he would jump in there and the effect was rather like being exposed to nerve gas. I can't prove this, but it is my assertion that this is what happened to him. He was doing this for just a few short weeks, prior to his first symptoms showing up. The first symptom was a slight weakness in his right thumb and his grip strength lessened. Fasiculations in his upper arm muscles were next and a weakness in his right leg and foot. The slight slurring began shortly after this and all of these symptoms appeared within two months after his right hand weakness was observed.

I just don't think his exposure was one that was reversible. I look back on it all and I am heartsick. He was a vital, healthy 53 year old man, when he first developed this disease. At 57, when he died, he was on a ventilator and PEG tube, unable to move his body. His mind was always sharp and so was his very dry sense of humor and the sarcasm that I loved so much. He will always be my hero!

Somewhere there is an answer to all of this and it needs to be found.

hugs to you all,
Susan

 

[pye101]

Mike and Al - thank you for your kind greeting. I really wish I had access to this forum, while I was caring for John. There really was nobody here to talk with about what he was going through. The majority of his doctors were so negative and did nothing to encourage John to have any kind of positive attitude about his illness. As a result, I believe his life was shortened measureably. I was his advocate and turned into a semi-rabid attack dog, in dealing with his doctors. Hmmmm, I don't think they liked me very well but, as I told them - I was not competing in a popularity contest and was determined that they were going to dot every "I" and cross every "T", when it came to John's care.

Mental attitude is sooooo important, when it comes to chronic diseases. How can anyone have a positive attitude, when those around them insist on being negative. I was told that I should stop living in a "fairy tale" world, wake up, and prepare myself for the inevitability of John's death. This was two years before he died. I refused to listen to them and told them that only God would decide whether or not John was going to die. I didn't need them to "help" prepare me for anything.

What is wrong with our medical professionals?

 

[Paty]

Hi Susan

As I read your post about the way your husband showed ALS symptoms, I remembered that my husband Jorge, had an accident around 1980 or 1981 at this moment I don't remember the exact time but I can recall that it was on August, he was flying around two o'clock in the afternoon with a temperature in the 120 degrees, we live in a desert zone, just like Tucson, Arizona.

I remembered that one of the hoses broke he had taken his mask off, but thank God he had his helmet on, he lost consciousness and the plane crashed, his assistants were down near so they could take him off the plane real quick because this could have exploded and gone up in flames, the thing is that Jorge hit the pesticide tank. He was taken to a nearby hospital were he was sent home after telling him that he only had a finger and a rib broken.

Many of the pesticides used here in Mexico (sad to say) were not permitted in the U.S.A.
if they weren't allowed in the U.S.A. that meant that something was wrong with them.
I hope that researchers would pay more attention to environmental causes and start looking that way.

The way you describe how your husband started with his symptoms is very familiar to the once Jorge had; and it all happened so suddenly.

We started looking the meaning of fasciculations and we really got so scared and kept on looking until we were sure, before even the DX, that he did have A.L.S. I went through my son's books the ones he had left here after leaving home to go for his General's Surgeon Residence.

Thanks a lot for your feedback and hope that you stay here with us.

Sincerely,

Paty
Husband's caregiver DX 10-17-2005
Baja California, Mexico

P.S. ONE THING THAT I QUESTION IS WHY SOME GULF WAR VETERANS ARE COMING DOWN WITH A.L.S.

ONE THING I REMEMBERED JUST THIS MOMENT, I HAD JUST POSTED THE MESSAGE BUT HAD TO GO BACK TO EDIT, TO LET YOU KNOW THIS.
WHY COULDN'T JORGE AND OTHER DUSTER PILOTS BE BLOOD DONORS?
I REMEMBER THAT WHEN HIS MOTHER NEEDED A TRANSFUSION AFTER GOING THROUGH A SURGERY I DONATED THE BLOOD BECAUSE HE WASN'T ALLOWED WHEN HE FILLED THE PAPERS AND MENTIONED HE WAS A DUSTER PILOT THE CHEMIST AT THE HOSPITAL BLOOD BANK SAID DUSTER PILOTS WEREN'T ALLOWED TO DONATE.

 

[ltr]

Susan and Paty - I think the two of you should write a book about what has happened with your husbands. The medical population and researchers may not be listening to you, but we are and I would bet the rest of the world would too. It would also help both of you! You really have something here and it makes me wonder how many others may have had contact with some type of organophosphate. Just my thoughts (and I have a lot more of them about this, too!). Leslie

 

[Paty]

Hi Leslie

Hi Leslie, that is sure a good idea, I have started thinking why if this was a disease that appeared mostly on people from 40 to 70 yrs. old, it is now appearing on people some on their late 20's some on their 30's, like young Chad Bowman.

Could it be what we are eating, (vegetables, fruits) being dusted with organophosfates, it is something to think off.

I think all kinds of chemicals which are being handled without precautions, could be to blame for Neurological diseases such as MND (all kinds), Alzheimer, Parkinson's.

I wish that researchers took this seriously to try to find a cure for such a MONSTER of a disease.

Thanks for your reply.

Paty
Husband's Caregiver DX 10/17/05
Baja California, Mexico

 

[ltr]

Ever since the Industrial Revolution we've been ruining the earth and our health! I know it may sound a little fanatical, but the environment is causing all kinds of health disorders--cancers, how about ADHD, who ever heard of that in the 1800's, radon and lung cancer, als and war vets., and the list just goes on and on. I bet, Paty, you are right, that MND's are related to chemicals and how our individual bodies react to them. If you typed a mere 1500 words a day, your book would be done in no time! Leslie

 

[pye101]

Paty - You are right about the increase in ALS from ex-military. I wish I could remember the exact percentage of increase, but I know it was much higher than in the general population. My memory seems to think it may have been double. I think I may have read this in some documents I was going through at the Department of Defense. I believe it may have been transcripted testimony from a congressional inquiry. At any rate, it will take literally years before the government will move forward on any decision regarding ALS in the military. Seems that we can thank the Freedom of Information for some things, huh?

I did discuss this with several neurologists, who did not share the opinion of my husband's doctor that John's disease was caused by pesticide exposure. They simply patronized my views, as though I was simply an idiot and therefore should be politely dismissed. The closed minded attitude was amazing to me. I even enquired of them, if the point of becoming a physician was not to search for answers, in order to attempt to prevent disease. After years of literally arguing with the medical community, I have become a pretty cynical person. What is really terrifying is the fact that it wasn't just his local doctors who were disinterested. I couldn't get much feedback from anyone and I kept feeling that I just needed to keep on looking. There is a neurological expert out there, somewhere, who knows about this and just needs to be found. John's neurologist never actually caved, under the derision of his peers, but he became less interested in laying his medical opinions out there to be ridiculed.

I know that, one day, there will be a link identified between environmental and chemical toxins, and development of neurological diseases. When this happens, believe me I will be burning a path to those doctors who refused to open their minds to possibilities. What is really scary is that, one of these doctors is heading up the local ALS clinic here in St. Petersburg. How effective can this doctor be, if he has no vision of possibilities? This doctor was one that I had a very heated discussion with, in the middle of the intensive care unit. He told me that John's double vision was absolute proof of ALS and was one of the "end stage" signs. I felt it was because they had increased his Ativan and John was very sensitive to ANY drug. Before he became ill, he seldom even took an aspirin, unless he was nearly at death's door. At any rate, when they lowered his dose of ativan, the double vision disappeared. Hmmmmmmm....... It never returned. He also advised me, at that time, that John had merely days to a week or two left. That was nearly a year before he finally did die.

When he died, it was NOT from the effects of ALS, but from a retroperitoneal hemorrhage. Although it's been over eighteen months since his death, I've just managed to force myself to sit down and read through his autopsy report. Soon now, I'll be able to pick up the phone and call the pathologist who performed that autopsy. I still have some questions that I would like to pose and I'm interested in hearing his answers. I understand there are very few causes for retroperitoneal hemorrhage and I'd like to get this clear in my mind, as far as what caused this to happen in John's case.

Too many questions and too few answers.........

I'll see if I can get all my research information together and will post links to many of the sites I managed to ferret from the internet........

hugs,

Susan

 

[Paty]

Thanks Susan

Thanks Susan we'll be waiting for all the links you can provide us with.

Feel free to e.mail me whenever you want to talk to someone, my e.mail is [email protected] , my private messages are open too.

Paty
Husband's Caregiver Dx 10/17/05
BAJA CALIFORNIA, MEXICO

 

[liz]

Anna -

How's your brother?

Liz