I Can't Believe This Dr.

[Generic]

About a month ago my mom and I was going through old paper work to get rid of. She found my old shot record from when I was little. Which sparked my memory of getting allergy shots when I was 3 or 4. I asked her what it was for. She then went on to explain that the DR. thought I had developed an allergy to wheat.

This was after having "the flu". Mind you I was NEVER tested for any allergies. Here is the OH MY GAWD! He took my blood and sent it to a lab to have it altered some how. The proceeded to inject me with the altered concoction every day for 2 weeks.

I started thinking about this. Talked to my mom, some more and then started to wonder. I started showing symptoms of celiac when I was 2.5 y/o. So basicly, he took my own auto-immune response and mutated it some how and shot it back into me.

Out of curiosity I asked my current DR. about this (0n valentines' day). He asked me when this occured. I said about 1977 or 78. He then looked at me all weird. Then explained, that it was some sort experimental thing. He had only ever heard of them trying to do that sort of thing on HIV paitents. And that had terrible side effects.

So he then said "I couldn't imagine the repercussions that could have on you and your health. That it could be detromental. That it would explain the health problems you are having now".

Needless to say I am a little freaked out about this. There is nothing I can do about this. I couldn't sue the Dr. if I wanted to. He is probably long dead by now and I'm sure my medical records are too.

Any thoughts on this?

[chrissy]

i've never heard of such a thing, but it might be a good idea to check into things a little more before taking your doctor's word about it-----i was a teenager during those years and we had never even heard about HIV back then, so it may not necessarily be the same thing.

[gfp]

i've never heard of such a thing, but it might be a good idea to check into things a little more before taking your doctor's word about it-----i was a teenager during those years and we had never even heard about HIV back then, so it may not necessarily be the same thing.

I don't think thats what her present MD meant... only that the technique was later tried on HIV patients...

laurie@xtreme

Any thoughts on this?

Wow lots but how to articulate them?

I'm rarely stuck for words, indeed I would often be better saying nothing but this is one of those rare occaisions I want to say something and am truly lost for words...

I can't begin to imagine how you feel about this....

[Generic]

Yes what the Dr. said, was the same technique was later used on HIV paitents, not that I was injected with HIV.

If you are at a loss for words, then OH BOY! You are always full of info and a great perspective.

[CarlaB]

It's a shame they didn't know more about celiac back then ... and it's a shame that now doctors should know more and don't.

[Generic]

What really pisses me off, is my mom told him she thought I had celiac disease. She is a nurse and had remembered it from her training. He poo-pooed her and told her she was a paranoid mother. There was no possible way I could have it.

Now due to all this, I am constantly battling health problems and over half my teeth have fallen out of my head. I could have been saved a lifetime of health problems. Plus he compounded the problem.

Sorry to rant, I have lived with disease for 19 years (diagnosed). I accepted it along time ago and was thankful it was discovered at a fairly early age. I was assured as long as I stayed on the gluten-free diet, my likely hood of developing other problems was slim to none.

Now I find this out, they think I may have MS, myositis or rheumatoid arthritis. Plus gawd only knows what. Thanks for listening.

[CarlaB]

Now I find this out, they think I may have MS, myositis or rheumatoid arthritis.

This is a celiac board, I know, but I wanted to point out that these are common misdiagnoses for Lyme Disease. For more info on Lyme -- Open Original Shared Link, Open Original Shared Link (the only reliable lab), www.lymenet.com.

You can PM me if you want more info ...

[Generic]

This is a celiac board, I know, but I wanted to point out that these are common misdiagnoses for Lyme Disease. For more info on Lyme -- Open Original Shared Link, Open Original Shared Link (the only reliable lab), www.lymenet.com.

You can PM me if you want more info ...

At this point I am almost willing to try anything. Aside from standing on my head and chanting. LOL I'll P.M. you.

[CarlaB]

At this point I am almost willing to try anything. Aside from standing on my head and chanting. LOL I'll P.M. you.

Okay. I'm on my way out right now, but I'll answer later. You will find tons of info on the websites I posted to keep you busy in the meantime.

It's a bad diagnosis to have, but it sure beats treating MS or RA when you don't actually have them!!!

[Generic]

Any one have any more thoughts? I think I am going through the grief process. I'm angry right now.

[jerseyangel]

Hi Laurie,

I just want to say that I was horrified by what your doctor did. I don't have the scientific mind that others here do, but it is just unthinkable to me that your doctor would have taken it upon himself to do such a thing.

I wish he would have at least listened to your mom back then. Of course you're angry--I'm angry for you! Take care

[gfp]

Hi Laurie,

I just want to say that I was horrified by what your doctor did. I don't have the scientific mind that others here do, but it is just unthinkable to me that your doctor would have taken it upon himself to do such a thing.

I wish he would have at least listened to your mom back then. Of course you're angry--I'm angry for you! Take care

Other than the underlined part that's how I feel.... Wow ... and trying to look at this with scientific detachment doesn't help. You must be really angry and I can't say I blame you... of course it won't do any good but I'm angry for you.

I'm still at a loss for words.... well a few choice ones come to mind regarding your childhood Dr. but non of them are really repeatable.

[Generic]

I'm still at a loss for words.... well a few choice ones come to mind regarding your childhood Dr. but non of them are really repeatable.

You are probably thinking along the same lines as me. I don't even know where to go from here. Should I try to see a neurologist? A Dr. who specializes in auto-immune diseases? I just don't know and I feel so helpless. Gawd I would love to give that man a piece of my mind.

[2kids4me]

I would seek the guidance of a rheumatologist. Present him with whatever info you have about what they injected back into you. There are "rheumatology screens", ENA profiles, and other tests they can run.

Likely what this idiot dr was doing was an experimental use of using one's own serum to vaccinate you against the perceived allergen.

In animals - they can make an "autogenous vaccine" for warts. In an animal (cattle) with severe wart issues, they take some warts, send to a lab where they are processed and made into a vaccine for that animal against that particular strain of wart. Sounds bizzarre but it works. Now - that is a vaccine for a viral issue (warts are caused by viruses).....

it sounds like they were trying some sort of similar protocol for you - an autogenous vaccine - which in my mind is outrageous beyond comprehension - they used an experimental unproven program on a CHILD..... and they were taking immune compenents (most likely) and injecting them back in an altered state....yeah I'm guessing that had an impact

Sandy

EDIT -add on - I am adding a definition of autogenous vaccine. I did a bit of looking and it appears your doc was likely an old world medicine guy - apparently before the advent of antibiotics - taking a person's blood and altering it then injecting it back in was an accepted practice ( to stimulate antibody production)..but was for use in bacterial infections that were not responding to current therapy.

autogenous vaccine a vaccine prepared from microorganisms which have been freshly isolated from the lesion of the patient who is to be treated with it

[plantime]

Using children for lab rats! Did they tell your mom everything, including the risks involved?

[Generic]

She told me, she had no idea that it could be bad for me. She was going under the advise of a Dr. and was trying to get me well. She feels terrible about it. I keep telling her it isn't her fault. Back then people didn't question Dr.s much. let alone get a second opinion.

[Generic]

I would seek the guidance of a rheumatologist. Present him with whatever info you have about what they injected back into you. There are "rheumatology screens", ENA profiles, and other tests they can run.

Likely what this idiot dr was doing was an experimental use of using one's own serum to vaccinate you against the perceived allergen.

In animals - they can make an "autogenous vaccine" for warts. In an animal (cattle) with severe wart issues, they take some warts, send to a lab where they are processed and made into a vaccine for that animal against that particular strain of wart. Sounds bizzarre but it works. Now - that is a vaccine for a viral issue (warts are caused by viruses).....

it sounds like they were trying some sort of similar protocol for you - an autogenous vaccine - which in my mind is outrageous beyond comprehension - they used an experimental unproven program on a CHILD..... and they were taking immune compenents (most likely) and injecting them back in an altered state....yeah I'm guessing that had an impact

Sandy

EDIT -add on - I am adding a definition of autogenous vaccine. I did a bit of looking and it appears your doc was likely an old world medicine guy - apparently before the advent of antibiotics - taking a person's blood and altering it then injecting it back in was an accepted practice ( to stimulate antibody production)..but was for use in bacterial infections that were not responding to current therapy.

autogenous vaccine a vaccine prepared from microorganisms which have been freshly isolated from the lesion of the patient who is to be treated with it

Thank you I will explore that avenue. Very interesting information, I am going to research this some more. I believe he was a military Dr. before opening his private practice as a pediatrician. Maybe he learned to experiment on people in the army.

[Rachel--24]

Now I find this out, they think I may have MS, myositis or rheumatoid arthritis. Plus gawd only knows what. Thanks for listening.

-Laurie

Hi Laurie,

I dont know anything about the autogenous vaccine to comment on its possible impact on your health or to say whether or not your current issues are a consequence of this Dr.'s actions??

All that I *can* say is that other autoimmune diseases are common amongst those with Celiac Disease....you are certainly not alone with these ongoing problems.

Do you know what triggered your Celiac Disease when you were a child?? Autoimmune disease is believed to be caused by the immune systems response to virus or bacteria. Its possible that you may have an unidentified infection....which your immune system is still fighting. This could potentially lead to further autoimmune disease and ongoing "unwellness".

Its something to look into.

As CarlaB stated....MS and Rhematoid Arthritis are very frquently found to be actual symptoms of Lyme Disease...a result of the immune system actively fighting the infection causing maifestation of these symptoms.

The bacteria or virus will generally "hide" in the bodies own tissue...whether it be in the brain, in the joints, in the thyroid gland, etc. Once the immune system launches an attack on the "enemy".....autoimmune conditions can be a direct result of that attack....considering the "enemy" is existing within our own tissue.

Autoimmune and Degenerative Diseases are complex, multiorgan diseases of unknown etiology. Although we do not know exactly what causes Autoimmune and Degenerative Diseases, there is increasing evidence that in many patients chronic infections, particularly by certain bacteria and viruses, play an important role in these diseases along with genetic predisposition and immune dysfunction. How could infections be important in Autoimmune Diseases? They could be involved in helping to cause the illness, or they can affect patients by serving as cofactors for the illness (not causing illness on their own but serving as important factors in the disease process) or even as opportunistic infections that increase patient morbidity (sickness) and complications associated with the disease (see Nicolson et al., Antimicrobics and Infectious Diseases Newsletter, 1999).

Infections have been found in a variety of Autoimmune Diseases, particularly in Rheumatic Diseases, such as Rheumatoid Arthritis, Scleroderma, and other rheumatic disorders. We and others have gathered substantial evidence that chronic bacterial and viral infections are commonly associated with Rheumatic Diseases, and many of these patients respond to antibiotic therapy. These patients are now recovering from their illnesses after decades of inadequate diagnoses and treatments. The recovery is slow; it usually takes up to or over a year to recover, but these patients had no alternative or effective treatments for their conditions, other than the alleviation of pain.

Chronic infections are important in a variety of autoimmune and neurodegenerative diseases, such as MS, Lupus (SLE), among others, and neurodegenerative diseases, such as Amyotrophic Lateral Sclerosis (ALS). We previously proposed that many and perhaps a majority of these patients might be suffering from mycoplasmal and other infections that can cause, in part, their complex signs and symptoms. Systemic chronic infections (caused by bacteria such as Mycoplasma, Chlamydia, Borrelia, Brucella, etc. or viruses such as CMV, HHV6, EV or enterovirus, etc.) can invade virtually every human tissue and can compromise the immune system, permitting opportunistic infections by other bacteria, viruses, fungi and yeast. Mycoplasma, Chlamydia, Borrelia, Rickettsia and other pathogens can also directly damage and kill nerve cells in a process called apoptosis, resulting in nervous system degeneration.

When mycoplasmas exit certain cells, such as synovial cells, nerve cells, among others that can be infected, they can stimulate an autoimmune response. This can occur by different mechanisms. One mechanism that has intrigued us is that when certain microorganisms, such as certain species of mycoplasmas, exit from invaded cells, they carry part of the host cell membrane on their surface. This may trigger the immune system to respond to the host antigens on the foreign microorganism. Alternatively, some microorganisms display surface antigens that mimic host cell surface antigens, and these may stimulate autoimmune responses.

New Insight into Autoimmune Disease: Bacterial Infections

The immune system is a complex and powerful weapon that provides protection against bacteria and viruses that, if left unchecked, would wreak havoc throughout the human body. The ability of the immune system to recognize the body's own tissues is essential, but sometimes the immune system loses the ability to distinguish "self" from potentially harmful invaders. This can lead to autoimmune diseases (such as Hashimoto's thyroiditis, and Graves' disease), which are characterized by destruction of healthy tissues. Although it is not clear exactly what causes the immune system to go awry, there is increasing evidence that in some cases infections with viruses or bacteria may play a role. Now, a new study published in the June issue of Immunity provides evidence that bacterial infections induce a kind of self-recognition that may contribute to some autoimmune diseases.

There is evidence that the development of certain autoimmune diseases may be associated with a bacterial or viral infection that stimulates production of antibodies and immune cells called T cells, which are targeted against bacterial proteins that closely resemble "self" proteins, leading to crossreactivity with healthy tissues. Dr. Gennaro De Libero from University Hospital in Basel, Switzerland, and colleagues identified a different mechanism where bacterial infections promote activation of T cells that recognize molecules called glycosphingolipids (GSL) that are present in bacteria and humans. The researchers show that infection with some bacteria or even just exposure to pieces of the outer wall of the bacteria results in an increase in "self" GSL synthesis by cells that promote the immune response and subsequent stimulation of autoreactive GSL-specific T cells.

[Generic]

Yes, unfortunately I have known for 19 years, that other problems could occur. That is why I have always done my best to adhere to a gluten free diet. I have no idea what could have triggered my celiac. I was about 2.5 y/o when I first started having symptoms.

However I believe it was not fully triggered into full blown celiac until I was 12 y/o. That was when my niece died and it was a horrendous stress on the whole family. I know for a fact that I suffered until I was 13 y/o and my body was shutting down. I went through an entire year of testing while they tried to figure out what was wrong with me. That is my old pediatricians fault.

If he would have even remotely listened to my mom's concerns and tried me out on a gluten free diet, I could have been saved all those years of suffering. I am 100% positive that I would have allot more of my teeth, if I had gone gluten free back then.

My mom took me off wheat on her own, but she didn't know that gluten was in barley, rye & oats. She gave me rye crisp crackers as an alternative to bread. She saw an improvement but I was still sick, so she thought maybe that wasn't the problem after all.

Yes, I am going to save up some money and get tested for lyme disease. That way I can check it off the list one way or another. I am going to try and get a referral to a rheumatologist also.

The bottom line is I am just angry that I was used as a guinea pig. That Dr. had no right to do that to me.

Hope that didn't come off as grumpy, I appreciate everyone's thoughts and suggestions. Thank you.

[Rachel--24]

The bottom line is I am just angry that I was used as a guinea pig. That Dr. had no right to do that to me.

Hope that didn't come off as grumpy, I appreciate everyone's thoughts and suggestions. Thank you.

Laurie,

Of course you have every right to feel what you're feeling. I think most of us here have felt in some way that we've been "wronged" by our Dr.'s. I dont think you come off as grumpy......but even if you *are* grumpy....you have every right to be....and we all understand where you're coming from.

I would be angry too.

About the Lyme testing. If you dont know already you should use Igenix lab for testing. Other labs arent very sensitive and miss most cases of Lyme Disease....unfortunately. If you have questions about this....feel free to pm me.

[Generic]

Rachel, I got the info from Carla already. Thanks. LOL, that is why I have to save up for the testing. It's kinda spendy, but it's worth it. Now I need to find a Dr. that is willing to do the testing. I will find that through the WA state lyme info web site.

I just wanted to make sure I wasn't coming off as a B****. It's hard to tell, sometimes on the net.

Thanks