Agent Orange and Wegener's Granulomatosis

[catsmtn]

I am a Vietnam vet and was diagnosed with WG in November 2010. I served in the USAF in Vietnam at the close of 1966 through November, 1967. Never sick, WG came for no where. In my research, I have noted that the VA to date has determined WG Vietnam vets are not eligible for benefits. In July 2010, another autoimmune disease, Grave's Disease, was related to Agent Orange. The study was presented at the American Association of Clinical Endocrinologists annual meeting in Boston by Dr Ajay Varanasi, an endocrinology fellow in the University of Buffalo Department of Medicine. He said that the results of the survey of medical records of upstate New York veterans born between 1925 and 1953 showed that the disease was three times more common among individuals who encountered the dioxin-containing chemical as opposed to those who were not exposed.
http://www.endocrineweb.com/news/thyroid-diseases/2002-study-finds-evidence-link-between-thyroid-disease-agent-orange-exposure.
I have prepared a draft of a nexus letter for my doctor which includes the statement that "more likely than not, Paul Rosedale's Wegener's Granulomatosis was caused by exposure to Agent Orange in Vietnam". There is no other cause one can name. This letter will be submitted with my application for benefits. I need to know your experiences on this subject, and if you believe your doctor would be willing to sign a letter with a similar underlined statement for you. The more letters we have, the better our chances for benefits. Willing to share any of my research with you.

[JanW]

Hi, Catsmtn - I can't speak to your particular case, but most docs will tell you that the mechanism by which WG is activated is poorly understood/completely unknown. I do not believe that my doctor would ever say that my WG was caused by one particular thing.

[catsmtn]

Hi JanW, The key are the words "more likely than not". I understand the VA will accept this terminology.

[ScreaminMeanie]

Hi Catsmtn - I also have reason to believe my WG was caused by exposure to herbicides, but there is absolutely no evidence to back up my theory. I wish you best of luck in pursuing this. Please keep us informed how your crusade is going.

[Sangye]

Hi Catsmtn, I haven't heard of dioxin exposure as a cause of Wegs but wouldn't doubt it.

I don't think my Wegs doc at JHU would sign a letter with such a statement because there isn't enough direct evidence in your case. If you were sprayed with agent orange and soon after developed Wegs, then a direct relationship could be demonstrated.

There are a couple things that are known to cause Wegs-- silica (glass, as in glass dust) and certain solvents. Even Worker's Comp will pay claims if exposure to these can be shown to induce Wegs.

[julia]

My thoughts as to what caused wegs jumps around.

Was it pcp's in drinking water
Fertilizer on the golf course(played growing up, on kids day they fertilized)
Chlorine from swimming pool.
Asbestos in grade school building
Exhaust from near by power plant growing up
Living too close to power lines
Mono as a child
Car accident 1.5 years before diagnosis
Powder residue from airbag in car
Using Clorox-clean-up daily at work ( after a few years It really irritated my sinus)
Carpeting installed at work months before frequent sinus infections
Stress from dealing with husbands illness
Or just heridity( other family members have AI diseases)
Have I always had it and something triggered it?

These are just some of the reasons I think about ( I do not dwell on them just question once in awhile)

I do not think any of my doctors would sign but it is worth a try.


Forgot I was exposed to a child with Fifths disease 2-3 months before diagnosis. ( read somewhere this is suspect in relation to wegs)

[ScreaminMeanie]

Julia, I find it interesting that you had mono as a child. I did too. Other than stress, that's the only factor you and I seem to have in common (although playing on a golf course you certainly would have had exposure to herbicides also). I wonder how many other Weggies have had mono..........

[Psyborg]

I served in the first Gulf War, and I've pondered if its related to Gulf War Syndrome, again there is various stuff on the net that suggests there could be a link. I think the big thing here is that proving it is difficult, and getting a doctor to state it's probable is difficult considering they don't understand how Wegs develops at this time fully. Makes it difficult for those looking for medical support when the science is still fairly sketchy.

Contrast this to diabetes that they can conclusively say was cause by AO exposure for instance and they can scientifically explain exactly why. But then the large incidence of diabetics means they have a ton of attention.

[catsmtn]

Thanks for your replies. I believe it's time for the doctors to step to the plate for us Vietnam vets. After all, they have no reasonable explanation for our disease. Considering another autoimmune disease (Grave's) has been tied to Vietnam and Agent Orange, why exclude Wegener's? The VA has a benefit of the doubt rule. In 2007, Robert Aument, the VA Deputy Undersecretary for Benefits, made the following statement: "Benefit of the doubt," is something that is a fundamental part of the claims process. It is also something that we build into our claims processing training". I would ask the doctor who's hesitant to document the "more likely than not" statement for you if he/she would then give you the cause of your WG! You know the answer to that. If asked, would the doctor then be willing to document the statement that it's definitely not tied to Vietnam and Agent Orange? Never happen!

[JanW]

I'm pretty sure that my doctor would never sign something saying that my WG was caused by anything -- in fact he falls into the 'mechanism by which the disease is caused is unknown' camp. Obviously something causes it, but the disease is rare, and no studies so far have pointed to anything conclusive.

If, however, you can get a doc to say it could have been AO, obviously go for it.

[Widthofacircle]

I have reason to believe that WG hit me as a result of serious stress. A war situation would obviously also lead to seriously high stress levels.

[ScreaminMeanie]

I'm very on board with the stress theory. My first time I had experienced within about 18 months prior to DX the death of a beloved pet, my father committing suicide, a divorce, and two moves. This second time I experienced over about 20 months prior to DX the untimely and unexpected death of my best human friend, the untimely fatal illness and death of my best ever fur friend, a breast cancer scare, my husband's loss of income and the resulting bare avoidance of filing bankruptcy (literally, I was 30 minutes away from making an appointment with a bankruptcy attorney when we found a short-term alternative. The money situation has not improved much since then, but we are no longer teetering right on the edge).

[catsmtn]

Hi JanW, I know a doctor at this stage will not sign anything stating that Wegener's was definitively caused by exposure to Agent Orange. Rather, we want them to say in the case of Vietnam vets that Wegener's more likely than not was caused by exposure to Agent Orange in Vietnam. Here's parts of a statement from a very knowledgeable VA professional, Jim Strickland: "The "more likely than not" is the most important part. Most doctors really hate getting involved in such wordsmithing. It isn't something they train for and bureaucrats are sort of a natural enemy. However, this is exactly what VA will need and unless you have it phrased precisely, you can't prevail".

[catsmtn]

Hi ScreaminMeanie and widthofacircle. I will explore stress as a factor in my research. Thanks, Paul

[vdub]

I am also a Vietnam vet and retired AF, so I wish you all the luck in the world. However, linking WG with Agent Orange is probably a stretch. WG has been around for a long, long time and formally defined since 1936 -- long before agent orange. I think you'd have to prove a higher incidence of WG among those people exposed to agent orange in order to have a case and I'm not sure that is going to happen. No one knows what causes WG. Good luck. Let us know...

On edit... One of the things you might look at before going through to much trouble is to check and see if any other auto-immune diseases have been tied to Agent Orange. If so, that would be a good start. [click here for a list (http://www.publichealth.va.gov/exposures/agentorange/diseases.asp)]

[tankerB25]

I am a Vietnam vet and was diagnosed with WG in November 2010. I served in the USAF in Vietnam at the close of 1966 through November, 1967. Never sick, WG came for no where. In my research, I have noted that the VA to date has determined WG Vietnam vets are not eligible for benefits. In July 2010, another autoimmune disease, Grave's Disease, was related to Agent Orange. The study was presented at the American Association of Clinical Endocrinologists annual meeting in Boston by Dr Ajay Varanasi, an endocrinology fellow in the University of Buffalo Department of Medicine. He said that the results of the survey of medical records of upstate New York veterans born between 1925 and 1953 showed that the disease was three times more common among individuals who encountered the dioxin-containing chemical as opposed to those who were not exposed.
http://www.endocrineweb.com/news/thyroid-diseases/2002-study-finds-evidence-link-between-thyroid-disease-agent-orange-exposure.
I have prepared a draft of a nexus letter for my doctor which includes the statement that "more likely than not, Paul Rosedale's Wegener's Granulomatosis was caused by exposure to Agent Orange in Vietnam". There is no other cause one can name. This letter will be submitted with my application for benefits. I need to know your experiences on this subject, and if you believe your doctor would be willing to sign a letter with a similar underlined statement for you. The more letters we have, the better our chances for benefits. Willing to share any of my research with you.


Hey Catsmtn, I am a Vietnam Vet '68-'69 I am 20% disibilty rated and get my care at the VA. I was diagnosed Dec. of 2011 I'm interested in see how you are doing and how the claim is going. If you are still out there give me a shout.

Steve

[Sangye]

Just popping in to offer my 2 cents here. I agree with vdub. I can't imagine any doctor signing such a statement. Vietnam War veterans were also exposed to multiple vaccines, environmental toxins, local parasites and viruses, and exceedingly high levels of stress, any of which could have triggered Wegs. I was also in excellent health before Wegs struck suddenly and am not a veteran, though I grew up in a military family. There isn't a definitive causal relationship upon which a doctor could build a case.

I would like to see much more work done on researching a cause, though. The only study I know of is exploring a (highly unlikely) genetic link. If my doctors are any indication of what most docs are doing, no one is even asking for a patient history of exposure to toxins, unusual diseases, etc.... And I've been treated by a lot of doctors. It's unfortunate that they're losing such a valuable opportunity. It's the first question holistic doctors will ask.

Best of luck to you.

[pberggren1]

If my doctors are any indication of what most docs are doing, no one is even asking for a patient history of exposure to toxins, unusual diseases, etc.... And I've been treated by a lot of doctors. It's unfortunate that they're losing such a valuable opportunity. It's the first question holistic doctors will ask.

Best of luck to you.

I know what you mean Sangye. I have only had 2 doctors that would seriously discuss what I was exposed to before.

[Alysia]

intersting. is catsmtn still around here to tell us about his research ?
we have a case of veterans of the navy in Israel who were diving in a place with toxic water and got cancer. about 70 divers. but the court rejected them :thumbdn:
it sounds possible that "agent orange" caused many diseases. wg can def be one of them.
not only because of the stress but also because of exposure to toxins.

[Dirty Don]

The government, evidently many of them, are prone to not admitting errors from the past. As much as we'd like their cooperation in things like this, it most likely isn't going to happen. For one thing, those injured in the line of duty are expected to do just that, be injured...ways of military thinking. I've carried a dossier over 3 inches thick which belonged to my dad who died at 54. His death was attributed to cancer. The collection of evidence he accumulated was about the effects of radiation and his medical records. He was at Ground Zero in Nagasaki 2 weeks after the bomb dropped; he was a Marine Corps medic in WWII, stationed in Saipan so he was one of the first responders, as it were at the time, into the area to help after the devastation. NO, the government will not own up to generalized mistakes...the Agent Orange was a huge victory for those concerned, but there are so many others who will never get help...I'm afraid the weak link between war zones/activities and WG is thin at best...oh, and get in line...best to you in your efforts.

[Alysia]

I've carried a dossier over 3 inches thick which belonged to my dad who died at 54. His death was attributed to cancer. The collection of evidence he accumulated was about the effects of radiation and his medical records. He was at Ground Zero in Nagasaki 2 weeks after the bomb dropped; he was a Marine Corps medic in WWII, stationed in Saipan so he was one of the first responders, as it were at the time, into the area to help after the devastation. NO, the government will not own up to generalized mistakes...the Agent Orange was a huge victory for those concerned, but there are so many others who will never get help...I'm afraid the weak link between war zones/activities and WG is thin at best...oh, and get in line...best to you in your efforts.

I am sorry for your loss of your father when he was so young :crying: :hug1:and all the tough times that he had.... thanks for sharing.

[marcia houle]

Dear catsmtn...

My husband is a Vietnam Veteran, exposed to agent orange.....and he has Primary Central Nervous System Vasculitis......which has affected his brain, causing extensive physical and mental damage. We have filed for service related compensation....and have had a nexus letter written for him, by a vascular surgeon....Dr. Harrison Butler....Have you heard of him? He believes Dan's Vasculitis is caused by his extensive exposure to agent orange during his time in Vietnam....during 1968-69.....The VA denied his claim, and we are now in the appeals process. I am trying to get my senator here in NH to start a congressional study concerning the possible link between vasculitis and agent orange. I am definitely willing to share any of my information, because I believe there are more Vets out there with this condition....and it needs to be put on their list! Dr. Butler believes that Ischemic heart disease (which is on the VA's list of diseases agent orange has caused) is the same destructive process that vasculitis is....except that it happened in my husband's brain, not his heart. I am new to this site...so not sure how to navigate around it. I hope you get this message, and respond....I will be looking for you. My name is Marcia, and my husband's name is Dan.....He is totally disabled, and dependent on others to care for him. He can't work, or read or work on the computer (He was a software engineer) He suffers from Gran Mal seizures, has no short term memory...and can barely walk. We've been married for 38 years, and I'm trying my best to take care of him here at home. I hope I hear from you, I think we have a lot to talk about! Marcia

[tankerB25]

Marcia I am also a Vietnam Vet with Wegener's same era as your husband '68-'69 spend most of my time south west of the Danang area. I hope for the best for you and your husband Dan. I have not put in a claim yet but looking into it, the DAV said that it takes a doctor to make statements like the one your doc is making to have a chance so keep at it and good luck!

[mishb]

Marcia and Dan, Steve, catsmtn, your stories sadden me and I can't help feeling for what you are going through and also what you intend to go through. This is something very big. Don, I'm also sorry for what you have gone through with your dad and trying to get recognition. :crying:

I do believe that stress is one of the main causes for WG, as it also appears to have been for me - a final trigger anyway.

However, I don't doubt that the process of the spraying of agent orange all those years ago isn't also a big factor.
We all know that chemicals of any sort are a big no no for our bodies, even in this day and age - and ao certainly is/was a big one.

The only thing that I am thinking though, is that we have not seen any Asian or Vietnamese people with this condition know as WG/GPA. Surely with fields and forests and grounds covered in ao the soil and waterways would have been contaminated for years :crying: :unsure:

I hope that all of our Vet's (I wonder if there are any in Australia) with WG, can get some backing and a fair hearing on this case.

Just remember the claims/fights between Peter Morris Group or James Hardie in relation to proving that their products caused cancer etc - this can take a very long time.....and this makes me sad.
I think you need to enlist the help of Erin Brockovich.......and you can put WG on the map.

Wishing you all the best - and Marcia, I hope you get the support that Dan requires and also the acknowledgement (for all of you) from the Government and people concerned.

[mishb]

I also had mono (we call it Glandular Fever) as a young adult.

I put my WG down to stress as a result of a nasty car accident, followed three months later by a breast lump & biopsy and the death of my father the next day.
My sinus problems and fever started the night of his funeral, however I had been having joint and muscle pains for about a year before these events.
This also combined with demolishing/renovating a very mouldy bathroom - could all be causes of WG

[tankerB25]

Hi Michelle,

I don't have any idea if AO is in anyway a cause for WG, but with all the other health issues caused by these and other chemicals I always wonder. I read a report/paper online about toxins in moders society being a cause of all types of autoimune problems but that was just one mans opinion and I'm not a doctor so I take it all with a grain of salt.

As far as Vietnamese getting WG or any other disease how would we know? It is a pretty closed country and many people will be born in their village live there and die without benefit of modern medical care. I have a friend who went there with a medical team, some type of doctors without boarders thing, and she said the medical care even in the cities was pretty poor.

Stress may be a cause but I have to say I have been in a lot or stressful/emotional situations and WG didn't show its ugly face! I was retired and living a dream (well for me anyway) life when WG came knocking on my door. I will say that I had a bad case of the flu right before my dx back in 2011 so who knows. To me it's all a mystery that doesn't get enough attention because it is still pretty rare.

By the way I know there are plenty of Vietnam vets from Australis, I wonder, like you, if any have been struck with WG or other autoimune issues.


Best to you also,


Steve

[windchime]

I was diagnosed with Wegs in 1972 while serving in the AF. I have never been in country, but did have mono twice, once at 16 and once at 18 in tech school. One of the theories about wegs is that it is triggered by a virus in other words having something like the flu or mono. I'm certainly not saying that AO couldn't cause it because it was a nasty chemical. There are many on here that have a good idea of what their triggering event was, but of course none of us have any proof. I think that the wegs usually develops within a couple of years of the triggering event. Just some thoughts.

BTW I did get a VA disability of 30%, but the medical board opted to NOT send me on early retirement. I mostly got it because they couldn't prove it wasn't service connected since they couldn't find my induction chest X-ray. I have recently submitted paperwork to have it increased since I'm unable to work and I probably won't be able to again.

I'm saddened by the treatment that some vets receive. I know a man that recently passed of brain cancer and he was in the appeals process trying to prove that AO caused his cancer. Please keep trying although it is a lengthy, time consuming and exhausting process. A suggestion would be to get your in service medical records. You never know what's in them and you may see something that correlates to wegs or that sends up a flag. You can order them online and it takes about 8 weeks or so to get them. The VA has no doubt requested them, but get your own copy. Hope this helps in some small way.

[marta]

See I can't stay away that long...

So I just finished writing a letter to the CBC (Canada's Broadcaster for those of you not in Canada) and they were asking today about what people think about making vaccinations mandatory because of the measles outbreak, I just popped on here as I was waiting for my computer to find a site about squalene and Gulf War Syndrome, as I am so totally against mandatory vaccines and wanted to support my argument.

For those of you who might not read my rambles before, I (along with my doctors) firmly believe that my WG was trigerred by the H1N1 vaccine, which in Canada in 2009 was laden with squalene, and adjuvant banned in the US but also used in some of the northern European countries to 'spike' their vaccine efficacy. It (squalene) has been linked to GWS (Gulf War Syndrome) which is a "multi-symptom rheumatic disorder". There is a test to see if you have squalene antibodies, however I think in most our cases with the treatments we've undergone, they'd be gone by now along with most of our other antibodies. BUT, it's a piece of the puzzle.

So I don't know that it's the AO but probably something they jabbed you with under the guise of 'protection'. Here's the article I was talking about: Autoimmune Technologies LLC, New Orleans (http://www.autoimmune.com/GWSGen.html) and here's the statement of Congressman Jack Metcalf on squalene and GWS Autoimmune Technologies LLC, New Orleans (http://www.autoimmune.com/SqualeneInVaccine.html).

There was obviously a genetic predisposition and there was a trigger. They KNOW that much about Autoimmune Disease, and Wegener's along with 140 others are Autoimmune Diseases and just because we don't have Wegener's in our family does not mean that we are safe from Autoimmune Disease. Here's a list of AI diseases and if you have WG, I would wager a bet that someone in your family (at least one person, but probably more) have something on the list here: List of AI diseases and disorders | Find The Common Thread Foundation (http://findthecommonthread.com/list-of-ai-diseases-and-disorders/) . As for the trigger, it can be anything from stress, to chemical, to a subcutaneous introduction of something that is intended to ramp up your immune system (squalene) to anything else that we spray in our homes, in our gardens and based on our employers demands....

Here are some pull outs from the article that literally changed my life. It is written by Dr. Noel Rose (Chairman Emeritus, AARDA National Scientific Advisory Board; Professor of Pathology and of Molecular Microbiology and Immunology; Director, Center for Autoimmune Disease Research, Bloomberg School of Public Health, The Johns Hopkins University, Baltimore, MD)

Etiology means cause, why the disease occurs. If we are concerned with curing disease and possibly even preventing disease, the etiology is the most important information. Why have we been able to control so many infectious diseases? Because we now know the bacteria and the viruses and the parasites that cause these diseases, and we can develop antibiotics and other drugs that will specifically attack that organism. Discovering the etiology has allowed medicine to progress to its present state where we can successfully treat and even cure many diseases.
.....

Autoimmunity is an etiology: it is a cause of disease. Anatomically, autoimmune disease is very diverse; and that’s why we see specialists in so many areas of medicine studying autoimmunity. They may be rheumatologists who are interested in joints; they may be dermatologists who are interested in skin; they may be cardiologists who are interested in the heart; they may be gastroenterologists who are interested in the gastrointestinal tract. But the common etiology for all of these disease–for Crohn’s disease of the gut; for lupus of the skin; for rheumatoid arthritis of the joint–the common etiology that brings together all of these diseases is autoimmunity.


....
A major aim of the American Autoimmune Related Diseases Association is to help us to understand that all of these diseases, diverse as they are, in their anatomical location, in their clinical manifestation, are related because they have the same etiology; they are all caused by autoimmunity. In my opinion, the only way we’re going to develop really effective treatments will be to treat the cause of the disease, not the symptoms. The symptoms are late; the symptoms are at the end of the train of events. We want to get on the train at the very beginning.


....


Now, what are some of the specifics of this relationship? Let me lay out some of the principles that we now understand about the etiology of autoimmune disease.


Unlike some diseases, autoimmune diseases do not generally have a simple, single cause. There are usually two major categories of factors that are involved in causing autoimmune diseases: genetics and environment. Virtually every autoimmune disease combines these two.

.....
In autoimmune disease, multiple genes are involved; we have genes that collectively increase the vulnerability or susceptibility to autoimmune disease. What is inherited is not a specific gene that causes a specific defect in metabolism; several genes increase vulnerability or susceptibility to autoimmune disease.


How do we know that there is a genetic basis of autoimmune disease? I can cite three kinds of evidence. The first is autoimmune diseases tend to occur in families. If there’s one case of autoimmune disease in the family, there’s likely to be another case.
However, it is not a particular autoimmune disease; it is generally a tendency to autoimmunity. One family member may have lupus, another family member may have Sjogren’s disease, a third member of the family may have rheumatoid arthritis. That’s one bit of evidence for genetic involvement, and we’ve known this for a number of years. If we ask patients when they come to us, “Is there other autoimmune disease in your family?”–and we actually have to mention them because people don’t know these are all autoimmune diseases–they will usually say, “Yes, my aunt had thyroid trouble…my grandmother had that disease…my grandmother had Crohn’s disease….”


.....


There are three kinds of information that tell us if autoimmune diseases are genetic. I’ve mentioned two. One is family clustering; the second is the association with HLA. What’s the third?
The third is that autoimmune diseases occur in animals as well as in human beings. With animals we can do the breedings that are necessary


......


I would like to conclude with the second half of the story. I’ve said that genetics accounts for about half of the risk that you develop an autoimmune disease.
The other half is the agent in the environment which triggers the process. Unfortunately, we do not know very many of the triggers. We know there are certain drugs that can induce lupus. We know there are certain environmental substances like silica that can induce scleroderma. We suspect that there are certain dietary substances, such as iodine, that can exacerbate thyroid disease. So we’re beginning to define the other half of the story, the environmental half. It is going to be, I think, an equally fascinating chapter in the saga of autoimmune disease in the next decade.


There, I've had my say both for the CBC radio and here because this seems to be the topic of discussion for me today.

I know that feeling of looking back and trying to figure out what set this disease off when everything seemed to be going so well.
I am pretty sure I figured it out for me and I am lucky in that I have the support of my docs on this theory. But boy oh boy have they (not sure who 'they' are) made it a tough subject to be opinionated in. Anyone who steps out of line of popular thinking is pegged as a conspiracy theorist and quickly dismissed, but you know me, I have no problem putting my feelings out there. :wink1:

Hope everyone is doing well and feeling stronger each and every day.

[pberggren1]

I'm glad you posted this Marta. I am surprised that my last doc would agree with you on all these points as well. We talked about these things at length now and then. My current doc alos agrees with most of these points.

[marcia houle]

TankerB25,

Please file for service connected disability! Go to the DAV.....they will help you. The Dr. that helped me with a nexus letter, is Dr. Harrison Butler.....He is a retired Vascular Surgeon, retired military, and this is what he does for a living now....he helps the Veteran's get their benefits from the VA.....I have his contact information if you want it. You don't need his letter to initially apply for benefits....I didn't have it at first. The more soldiers that apply for it....the better chance we have of them paying attention! You may certainly use my information in your application...let the VA know that you are coming across more and more vets with this condition, who were in Vietnam!

If I can help in any way....let me know....I have Dr. Butler's contact information, and you can google his name....

Praying for you....

Marcia

[marcia houle]

Phil were you in Vietnam too?

If so, file for service related! We need everyone to do so....we need to get the VA's attention on this matter....

Let me know if I can help in any way.

God bless,

Marcia

[marcia houle]

Michelle, I believe the Vietnamese people also suffer with this condition, and many more....I recall a few years back, running across something that addressed this very subject, but can't remember exactly where I read it. They must have so many health issues due to their country being saturated with these poisons.....I'm just not sure if anyone is doing a study on it! Wouldn't it be interesting if someone has done that.....

Anyway, thanks for your kind words....I'm not going to give up the fight, for my husband and for any other Veteran's out there, who are suffering with this condition. Marcia

[tankerB25]

Marta,

Wow a ton of interesting information thanks!

Steve

[tankerB25]

Windchime,

Did you get the 30% for the WG? If so that's an interesting fact that could be helpful to other vets. I have seen reports that vets exposed to AO at bases where it was shipped from or prepared (not in country) for the planes that spread it have filed clames for AO related issues, some succesful some not.

A kind of funny story I applied for my service records, including all medical records. There was nothing from the time I spent in the hospital in Danang so I called them and asked about those records. The person I spoke to said I would have to go to the hospital in Danang and get them. I said "do you know that danang is in Vietnam and it was an American military hospital" she said ok you will still have to go there to get them! I gave up at that point! it was kind of fun to look at all the other sutff I recieved from the request, memory lane ya know!

Steve

[tankerB25]

Marcia,

I will google the Dr. and talk to my DAV rep about this when I have the Dr. info. I currently have a claim in for diabites and I'm waiting for a responce from the VA.

Steve

[windchime]

Windchime,

Did you get the 30% for the WG? If so that's an interesting fact that could be helpful to other vets. I have seen reports that vets exposed to AO at bases where it was shipped from or prepared (not in country) for the planes that spread it have filed clames for AO related issues, some succesful some not. Steve

Steve, I did get the 30% for the Wegs. I was stationed at McChord AFB and lived on/near the base most of the time I was in. This is the first time I'm aware of so many vets with wegs. I'd probably know more, but my PCP at the VA won't refer me to Pulmonary even with extensive outside records. She's an idiot. I was in the VA hospital in Tampa 10 years ago with complications from a bronch they did and was treated like they had never seen anyone with wegs. So I'm not sure there are many vets getting treated at the VA. With that said I only go there in case I lose my insurance and need them some day. Maybe we should start a FB page for Vets with Wegs.

How do you prove the diabetes is service connected or is it connected to something else?

[tankerB25]

Cindy, If your PCP is an idiot complain and get a new one there are patient advicoates at the VA for just this type thing. I have a Nurse Practioner that works with my rumey who told me once (when this was all new for me I had millions of questions and called her all the time) don't ever hesitate to call you have to BE YOUR OWN ADVICOATE...what a great lady. She still helps me all the time and my PCP is good too, although I get a new one every 3 years or so. My rumey says Wg is pretty rare and they don't have many but on this site it seems there are a bunch, the FB page is an interesting idea.

The diabetes is presumed service connected, as are about 11 other diseases, if a person had "boots on the ground" (VA term) in Vietnam. My brother was in Nam also and he sufferes from diabetes and some pulmanory issues. He is collecting disability for both problems. Don't give up on the VA there are some really great people there. Years ago I gave up on my disability claim but a friend convinced me to get a rep (American Legion) and go back. It resulted in 20% for hearing lose and tinitius. Never give up!


Steve

[windchime]

Thanks for the info. I had a great PCP, but she left and I went through 3 or 4 before I ended up with this one. Unfortunately I'm seen in the Woman's Clinic and I think they only have one doc there other than the gyno. I will have to call the advocate and see what I can do. I'm sure she is a good doc just frustrating to deal with. I had an excellent PA when I lived in the Tampa area. I miss her. Interesting info on the diabetes. Why is it considered SC if you were in country. Inquiring minds want to know. My request for increase is in process so we'll see. I'll post it some where when I get the information. Luckily I originally filed within a few years after getting out in 73. I had all my medical board records etc.

[tankerB25]

Cindy, Diabetes is considered SC because the percent of Nam Vets that have it is off the charts compared to non Nam Vets and general population. There are about 12 diseases that are "presumed" to be caused by the toxins in AO, it is easy to find the list if you google something like AO/vietnam disease list.

Good luck on finding a new PCP and the request for an increase.

Steve

[tankerB25]

catsmtn, Hi I recently was having a RTX infusion at the VA here in Denver when during casual conversation with staff there I found out that there are now 3 other cases of WG being treated there. Of course I wasn't able to get any information on the Vets history because of privacy laws. I have a reume apt in a few weeks and I will see if I can find out if these vets are Vietnam era or not, I'll keep ya posted.

Steve

[marcia houle]

I am working with Senator Kelly Ayotte's office here in New Hampshire....trying to get a congressional study going, concerning the connection between AO and Vasculitis....I have a conference call in her office next week, with her employee who works helping the vets. We are going to be speaking to someone down in Washington.....so I'm praying hard they will start the study....Please! Go to your Senator's and your congressman, and request the same thing....If we can get the attention of the politician's we may have a chance of helping the Vets get what they deserve....this condition needs to be on that list of presumptive conditions that AO causes....my husband Dan doesn't have Wegener's Vasculitis....his is worse...it's in his brain....but "Vasculitis" in any form, should be on that list....so let's fight for it......

[marcia houle]

Steve,

I hope they grant you SC for your diabietes.....they should....and it should be retroactive from when you first filed.....

[marcia houle]

Thanks Steve, and forgive me if I don't respond too quickly to your posts....I am having trouble figuring out how to navigate through this website. I would love it if we could start one on Facebook....much easier. Do you know how to do that, and would you be interested in it?


Marcia

[marcia houle]

Steve, there is a page already on fb...Central Nervous System Vasculitis...if you're already on fb, and are interested in getting on that page....I feel we could correspond easier....and anyone else on here that wants to do that, or start a Wegener's page.....that would be great!

[tankerB25]

Marcia, well now I don't feel so dumb about getting around the website! I am on facebook and I'll see if I can figgure out how to join that page. I like the idea of contacting a senator about this issue. This might be a good time to make some noise considering the all the bad press the VA is getting about the guys that died on a "waiting list" while VA admin folks were getting bonuses for "short wait times" down in AZ. Today I saw that the Denver VA is also having some kind of investigation going on too. A footnote i feel very lucky that I have great Docs who seem to care about my treatment but they are Docs not admin people!

Steve

[marcia houle]

Hey Steve....if you would like to friend me on fb....my full fb name is Marcia Main Houle.......hope to see you on there....Glad you have great Drs......

[LisaT]

Julia, I find it interesting that you had mono as a child. I did too. Other than stress, that's the only factor you and I seem to have in common (although playing on a golf course you certainly would have had exposure to herbicides also). I wonder how many other Weggies have had mono..........

I had mono as a child, then all of my AI issues began. I still test positive for chronic mono last time I checked. This and thyroid issues appear to be a common thread in many AI diseases.