Gulf War Illness Treatments Discovered. Will Veterans Affairs Officials Listen Now?

[rangerrebew]

 Gulf War Illness Treatments Discovered. Will Veterans Affairs Officials Listen Now?
April 8, 2021|Kelly Kennedy

The science is clear and treatments are available now. Everyone—advocates, researchers, and officials alike—say there’s reason to expect even more progress, and more solutions, soon. But for decades, the Department of Veterans Affairs has focused on data collection that experts say will not increase health care outcomes and has ignored study after study as 250,000 veterans continue to suffer symptoms that make it impossible to lead healthy, pain-free lives.

 *   *   *   *

As veterans returned to Fort Devens, Massachusetts, after Operation Desert Storm, Kimberly Sullivan started seeing symptoms that startled her:

Stomach problems. Headaches. Extreme fatigue. Muscle pain. Memory problems. Joint pain. Respiratory issues.

 â€œHere are our veterans in their 20s and 30s, trying to come back from a deployment and trying to go back to full-time civilian work and go to school on the GI Bill and raise a family,” Sullivan said. “And they should have been able to do all that—and more—at that age. And it was very clear that many of our veterans were having difficulty with that.”

https://thewarhorse.org/gulf-war-illness-healthcare-treatments-discovered-veterans-affairs-officials/

[sneakypete]

Will Veterans Affairs Officials Listen Now?

@rangerrebew

ONLY if they are told to listen by their political bosses.
 

[SZonian]

I have zero confidence any "official" will listen.

They will do to us what they did to the Vietnam Agent Orange victims...slow roll it until most, if not all are passed on and then just shrug.

We were shot up with all manner of "vaccinations" and took the PB pills the first few weeks of the deployment.  So it's no surprise really that many are afflicted.  Hell, I still have a golf ball sized lump in my a$$ from the "witches brew" shot given in the deployment line.

[sneakypete]

I have zero confidence any "official" will listen.

They will do to us what they did to the Vietnam Agent Orange victims...slow roll it until most, if not all are passed on and then just shrug.

@SZonian


I know all about that one. I was medievaced from VN for what they were calling "Tropical Acne",but they knew,or strongly suspected it was more than that,even then. I know this because I was in Special Forces,and have never heard of anyone else in SF being medievaced that didn't want to leave. We even rescued a few guys that were shot up and in the Army hospital in Pleiku waiting to be flown out of the country,and brought them back to our camp to be treated by our camp medics because they didn't want to leave.

Yet by the time I got back to Kontum,my orders out of VN had already been published,and my personal items already packed to ship back home. This,despite having already received the warning order and being briefed on a upcoming mission into Laos that was to kick off in a day or two. They had to replace me with a new guy that had never heard a shot fired in combat,and I was later told he died the first few minutes on the ground,due to not knowing what to do. He stood up to look around to see where the enemy fire was coming from,and took an AK round in the head. He was in VN for less than a month before he was KIA.

I had already been running missions for a little more than 14 months at that time,and would have never made that mistake. After you have been under fire a few times,you gain a "feel" of where the shots are coming from by sound. It's a unconscious thing you don't even think about after being under fire a few times.

I go back to Bragg,report into the Special Warfare Center,and am pretty much immediately promoted and sent to a conventional unit because I am no longer on jump status thanks to the "Tropical Acne",and am undeployable because I am under medical orders to remain clean and shower and change clothes every day.

Meanwhile,I PERSONALLY knew people still on active duty in SF with wooden legs,blown-out ear drums,etc,etc,etc.

Yeah,they thought it was "just acne that would go away",right?

My stomach started getting bloated. To the point where I could be riding in a car and hit a railroad track,and you could actually HEAR the water sloshing in my stomach. The VA response was "You are drinking too much beer and trying to rip the government off for a pension.

Meahwhile,they were giving me a generous disability pension of $46 a month for a bad back due to parachute jumps,and this cut me out of drawing unemployment. I had been in the army for almost 7 years at that point,and ALL I knew how to do was "SF-Related". Not many job opportunities for that in the civilian world back then,so I ended up living in the back of a 50 Ford panel truck parked in the woods for a while,and showering at friends houses.

It also kept me from getting any sort of permanent job that paid anything.  In addition to that,EVERYBODY knew back then that VN vets were psycho killers and drug addicts,and former "Green Berets were the worse of the "Baby Killers".

Several years later when the VA and Agent Orange were investigated,I was one of the ones called into a VA Hospital for thorough physical,as well as one at the Oschler Cancer Clinic in New Orleans. A few months later I got the official report on that,and it said I had been exposed to cancer-causing agents in VN and would likely get cancer (para-phrase).

In the same letter I get from the VA telling me that I am now 30 % disabled due to Agent Orange exposure,the VA tells me I no longer have a bad back. They did that to keep me from having a combined disability rating of 50 percent because it would have cost them a lot more money.

I now have Stage 4 Lymphoma and a 100 percent disability rating from the VA.  The same VA that is responsible for destroying the circulation in my left leg from failing to re-connect a blood vein after removing an "unspecified growth" from my leg. My leg turned black and purple and all they wanted to do was give me more fluid pills to make the swelling go down. I finally went to a civilian doctor locally and after killing the infection,he did a "varicose vein replacement surgery" right there in his office in about 20 minutes that saved my leg. I later found out the VA hospital didn't offer that service,and the docs weren't allowed to tell me about it because THEY didn't offer it.

[SZonian]

 
Sorry to hear and wishing you the best @sneakypete.

Damned sad how a bunch of bureaucrats can get away with screwing vets and nothing happens to them when caught.

We really need the ability to seek care anywhere, not just VA or VA approved facilities. 

[sneakypete]

Sorry to hear and wishing you the best @sneakypete.

@SZonian

Thanks,but it was nothing personal. Pretty much ALL combat vets were treated that way from the 60's to the 80's. There was nothing special about me.

We really need the ability to seek care anywhere, not just VA or VA approved facilities.

Now that I am rated at 100 percent and live more than 35 miles from the closest VA hospital,I do get to go where every I want,and bill it to the VA. It is a clumsy system,though. For example,the VA doesn't want to pay the local hospital or doctor for bandages,so they mail them to me and I have to take them to the doc or the hospital to have them applied. I am GUESSING this is because the VA can buy them cheaper in bulk.

Also,there are some doctors and hospitals that try to refuse treatment to vets with VA payment plans because the VA is so slow with paying. I STILL get bills from the local hospital that are months old,even though I told them in writing to bill the VA. Crap like that can add a lot of stress to an already stressful situation.

BTW,the clever plan the VA had before I complained in writing was to have me drive 275 to a VA hospital,get a room overnight,have my bandages changed the next day,and then drive another 275 miles to get back home. To add to the stupidity,they were paying me mileage expenses,and paying for the motel room. All to avoid paying the bills at a local non-VA hospital only 25 miles from my house.

I ended this by contacting my congresscritter and explaining how they were paying more by doing this than just allowing me to go to local doctors.

BTW,you can NOT sue the VA or any of their doctors for malpractice,either.

Ya just GOTTA love a bureaucracy!

[libertybele]

@sneakypete   I sincerely thank you from the very bottom of my heart for your service.  It is an absolute disgrace how you have been treated.  Still praying for you. 

[sneakypete]

@sneakypete   I sincerely thank you from the very bottom of my heart for your service.  It is an absolute disgrace how you have been treated.  Still praying for you. 

@libertybele

Thanks,but once again,I SINCEREY want to point out there is nothing special about me or the treatment I received. Many have been treated far worse than me because I had sense enough to realize I was about to get hostile,and just quit going to the VA altogether for maybe 10 years.  I can be sarcastic as hell and love to "punch holes in ego balloons",but I am lucky enough to realize that when I DO "lose it",I lose it BIG-TIME. Dragging a VA clerk across his desk by the front of his shirt and explaining to him the day I decided to take a break from going to the VA Hospital that "ONE of us is going to see a doctor today,bleep! Me,or you. Make your choice."

I did get to see a doctor that day,but it's safe to say I didn't make many VA friends that day.

THAT is the disgraceful part. NO ONE should be backed into a corner that far that they have to come out,grab people,and make physical threats,just to get the treatment they SHOULD  have received with a smile when they walked in the door.

I KNOW I am not going to make any friends here when I say this,but THAT particular VA hospital was staffed mainly by black employees,and they really seemed to hate white vets.  I have stood in line to see a clerk at that hospital,and when I got up to the front of the line,had the clerk look over my shoulder at the black guy behind me,and say "May I help you,sir?" This sort of thing should never happen anywhere,at any time.

[libertybele]

@libertybele

Thanks,but once again,I SINCEREY want to point out there is nothing special about me or the treatment I received. Many have been treated far worse than me because I had sense enough to realize I was about to get hostile,and just quit going to the VA altogether for maybe 10 years.  I can be sarcastic as hell and love to "punch holes in ego balloons",but I am lucky enough to realize that when I DO "lose it",I lose it BIG-TIME. Dragging a VA clerk across his desk by the front of his shirt and explaining to him the day I decided to take a break from going to the VA Hospital that "ONE of us is going to see a doctor today,bleep! Me,or you. Make your choice."

I did get to see a doctor that day,but it's safe to say I didn't make many VA friends that day.

THAT is the disgraceful part. NO ONE should be backed into a corner that far that they have to come out,grab people,and make physical threats,just to get the treatment they SHOULD  have received with a smile when they walked in the door.

I KNOW I am not going to make any friends here when I say this,but THAT particular VA hospital was staffed mainly by black employees,and they really seemed to hate white vets.  I have stood in line to see a clerk at that hospital,and when I got up to the front of the line,had the clerk look over my shoulder at the black guy behind me,and say "May I help you,sir?" This sort of thing should never happen anywhere,at any time.

I hear ya. When my hubby tried calling the VA to get help for my father in law a few years back he was told by a black man working at the VA to go f**k himself.  I called my state representative and complained.  I omitted the race issue but he did respond and turned it over to someone higher up.  Never had any problems afterwards.

You are right that sort of thing should never happen but especially at the VA!

Nothing special about you?  I disagree.  You served our country and fought for my freedom.  That's special in my books. 

[rangerrebew]

ONLY if they are told to listen by their political bosses.

I wonder who the military puppet masters really are?  I'm sure the flags who are supposed to be pulling the military strings are taking their orders from outside the military.  And I don't mean uncle Joe.

[SZonian]

Now that I am rated at 100 percent and live more than 35 miles from the closest VA hospital,I do get to go where every I want,and bill it to the VA. It is a clumsy system,though. For example,the VA doesn't want to pay the local hospital or doctor for bandages,so they mail them to me and I have to take them to the doc or the hospital to have them applied. I am GUESSING this is because the VA can buy them cheaper in bulk.

Also,there are some doctors and hospitals that try to refuse treatment to vets with VA payment plans because the VA is so slow with paying. I STILL get bills from the local hospital that are months old,even though I told them in writing to bill the VA. Crap like that can add a lot of stress to an already stressful situation.

BTW,the clever plan the VA had before I complained in writing was to have me drive 275 to a VA hospital,get a room overnight,have my bandages changed the next day,and then drive another 275 miles to get back home. To add to the stupidity,they were paying me mileage expenses,and paying for the motel room. All to avoid paying the bills at a local non-VA hospital only 25 miles from my house.

I ended this by contacting my congresscritter and explaining how they were paying more by doing this than just allowing me to go to local doctors.

BTW,you can NOT sue the VA or any of their doctors for malpractice,either.

Ya just GOTTA love a bureaucracy!

I'd heard that, but couldn't believe it could be that inefficient.  I suppose it's progress to some extent.  I imagine the VA is about as efficient as TriCare/TriWest when it comes to reimbursements.  Fortunately where we live, most local providers accept TriCare/TriWest but there was a time where many were not due to slow payment and also losing providers due to reimbursement rates.  Gov't bureaucracy again.

[PeteS in CA]

If you wade really deep into the article you can find what these possible treatments are:

But in recent years, though his symptoms can still be debilitating, he has found some relief—and almost entirely through supplements. He finds coenzyme Q10 “extremely helpful,” he said. Gingko biloba improves blood flow to the brain and may boost cognitive speed. And he takes curcumin, which is an antioxidant and anti-inflammatory shown to help Gulf War vets. And the low FODMAP diet, often recommended for those with irritable bowel syndrome, has also helped, he said. That diet is also being researched now for Gulf War illness. A sleep study led to a CPAP machine, which he said has been life-changing.

But those treatments appear to be just the hint of what’s coming—and the new treatments likely provide promise for civilians, too.

“We have multiple treatment trials that are ongoing right now,” Sullivan said.

Oleamide, which is available over the counter and may be helpful as a sleep aid or as a weight-loss supplement, is being studied to see if it can help reduce inflammation in the brains of Gulf War vets.

“That looks like it may be promising,” she said. “And that will be coming to the clinic soon.”

The researchers are also working with Nancy Klimas, director of the Institute for Neuro-Immune Medicine at Nova Southeastern University, as well as the director of clinical immunology research at the Miami VA Medical Center, on research that looks at possible differences between men and women in treatments for chronic fatigue syndrome.

In 2011, Beatrice Golomb, with the University of California-San Diego’s medical school, found that Gulf War veterans who took the supplement coenzyme Q10 saw improvement in their symptoms, including headaches, inability to focus, and feeling tired after exercising or other exertion. That was the first research to offer potential help to the sick veterans. Golomb’s finishing up a phase 3 on CoQ10 now through the Gulf War Illness Consortium.

“Phase three is the last trial before you bring it to the formulary at the VA,” Sullivan said. “If this is successful, this may be the first medication that could be approved through the formulary at the VA for Gulf War Illness for Gulf War veterans.

“So we’re very excited about that possibility.”

They’re running treatment trials of acetylcysteine, which is typically used as a cough medication, to reduce swelling in the brain and oxidative stress. It may also be effective as a treatment for people with chronic Covid symptoms.

“We’re really excited about getting that one off the ground soon,” Sullivan said.

Other treatment trials will check the efficacy of bacopa, which is used in traditional medicine to treat cognitive issues; etanercept, which is used to treat types of arthritis and psoriasis; and mifepristone, which is used to terminate pregnancies but also appears to lessen neuroinflammation.

My quote is long, but is a fairly small fraction of the article. Earlier in the article it discusses what are believed to be the several contributing causes that compound each others' effects.