Thoughts On Vaccine Challenge

[davecom]

So one of the things that happened to me when I first got sick a year ago was an extreme reaction to a flu shot - not sure if that's the actual trigger of the autonomic neuropathy or not - but basically I got a flu shot, and a day later I completely lost use of the arm. For a week and a half I couldn't even open my car door with it. The elbow (shot was in the shoulder, not elbow) hurt like **** and the arm was numb from there down.

Now I saw an immunologist finally and she was pretty stumped. I showed her all my old records. The only thing she wanted to order was a T-Cell panel, some EBV antibodies, Tryptase (after I mentioned MCAS), and a vaccine challenge. I have a choice of either the flu shot or pneumonia. I'm leaning towards not doing it at all since I had that reaction at the same time that I came down with POTS/SFN.

If you were me and had had the same extreme reaction to the flu shot last year at the same time that you got sick, would you do the vaccine challenge? If yes, why?

I have no reason to believe I have immune defficiency. All my basic IGA, IGG, IGM, and complements have been normal.

[Guest Alex]

Dave,

I believe Rachel's son (looneymom is her user name on dinet) had the vaccine challenge recently - she had a thread about it.

Also, you may find this article interesting:

http://jms.ndmctsgh.edu.tw/fdarticlee%5c3102091.pdf.

If the link above doesn't work then try to do a google search for "novel H1N1 influenza vaccine the cause of postural orthostatic tachycardia"

Personally, I'd refuse the vaccine challenge.

Alex

[dkd]

In 2010, three days after I received a flu shot, I woke up with horrible pain in my armpit, front of shoulder, back of shoulder. The pain moved down the arm over the next two months. I still have numbness/tingling in that hand. I have no proof that it came from the flu shot, but I am afraid to get another one---ever again!! My dysautonomia symptoms didn't start until two years later (that I noticed anyway), but I still wonder if that contributed to it.

[Guest Hanice]

Heck no..

[Katybug]

I can't prove that this was the issue with your shots but I used to get my depo pro era shots in my arm...same place they put a flu shot. Twice in a row, three months apart, the person giving me the shot hit the nerve. You can't feel it when it is happening but several hours to a day later, hitting the nerve will cause radiating pain, weakness, numbness and tingling both down the arm and in the shoulder area.

The flip side of that is that I get an allergy shot every week in that area and every other week I also get my xolair shot in Tue opposite arm from my allergy shot. Relatively speaking, the issue with people hitting the nerve is pretty low statistically.

[HopeSprings]

Holy cow, Alex I hadn't heard about this case! With all the attention around swine flu that year, I was so torn about whether to vaccinate my children, but decided to just do it. Reading that article made me cringe. Here, let me inject with you with some POTS? I know it's a rare reaction, but living with illness, I don't think I could knowingly take that chance with my kids. Thank goodness they both did fine.

Dave - if it were me, I would be satisfied with those blood test results and not feel the need to chance it with a vaccine that I reacted badly to in the past.

[Guest Hanice]

I dont even vaccinate my kids. Their is so much scary truuullleeeyyyyy mest up things in those vaccines! My daughter has her vaccines upto a year and my son only has 1 shot.. I wont be vaccinating them after reading all that I have. No way jose.

[Jan]

I don't know what a "vaccine challenge" is? If it means getting the vaccine I would pass. Risk vs benefit, I think it has too much risk vs minor benefit.

As for the article on POTS after a flu shot. I found it hard to find any causation. His getting POTS could have been totally unrelated to the vaccine and just a coincidence of timing.

20 minutes before I got really sick with POTS I was stung by a bee. The night before I ate shrimp that didn't taste quite right and thought I was getting food poisoning the day I got POTS. The month before I had the second Hep B vaccine in a 3 shot series. I was in a super stressful life situation at the time. Did any or all of these things cause my body to lose control over my autonomic nervous system? Who knows? Should I be afraid of bees, shrimp, vaccines and stress?

I actually am afraid of all the things I just listed...lol

[Katybug]

A vaccine challenge is to determine if your immune system properly produces antibodies. They give you a flu or pneumonia vaccine, wait a few weeks, and then draw blood to test for antibodies for the vaccine you received. It tells you how your basic immune response is working.

[E Soskis]

I never thought much about vaccines until I became extremely ill after receiving the shingles shot. Turns out, I am not able to take any type of live vaccine - it sets off the AAG and launches the autoimmune dysautonomia. Who knows if this was the trigger of AAG when I received vaccines as a child? - Still in all, I vaccinated my children - I have seen first-hand the effects of tetanus, whooping cough, measles, etc. Once you have seen a child die from a preventable disease, the very slim chance that the vaccination will trigger a weird response becomes a non-issue.

[HopeSprings]

Oh yes, I agree Soskis and my children have all the recommended vaccines, but I've debated when it came to some of the optional ones.

[gertie]

I had bad reaction to flu vaccine and was so weak I could not turn over in bed for days. I don't remember losing the use of my arm but I actually felt almost paralyzed at times. I could not hold my head up to eat. It lasted about 2 weeks. I never fully recovered & I had always taken the flu vaccine. I had been able to take antibiotics & medications that I needed until that happened. Now I'm allergic to basically everything. That is the same time I started having autoimmune problems & dysautonomia. I will never take another vaccine.

[looneymom]

Hi Dave,

I would say that your body probably had a reaction to the flu shot. My son and I got our flu shots this last Thursday. His blood pressure has been really low since he took the shot. However, this afternoon, his blood pressure is up to normal. POTS is so unpredictable. If you are running a fever of 101 or more they will not let you take the shot.

My son did go through the vaccine challenge. He did the pneumonia vaccine. He did not have a problem and his body built antibodies. So this should help protect him some more.

My son has a low IGA which cannot be treated. However the immunologist actually did testing when my son was sick. He was not running a fever at all but had a sore throat. His white blood count was up but his T- cells were way low. So he has a lazy immune system. However, my son is getting ready to go through some more testing because his PANDAS Testing is borderline and low T-cells affect this. My son is taking some supplements to boost his immune system.

Last January 2013, my son did catch the flu. He had the flu shot 10 days before he caught the flu. His body did not bounce back. He has tremors and cannot stand or walk. Our cardiologist and immunologist suggested that we get the flu vaccine sooner this year and we did. We are hoping that Tyler will not get the flu again. If your immune system is not functioning well, this may be the reason why your body is reacting like it is. My best advise I can give is not to take the vaccine if your are not at a normal level that you function with POTS on a day to day basis. Tyler did not take the vaccine until his sore throat issue was resolved. He was put on a Z-Pack because it looked like strep throat but strep test came back negative.

Do you think that you could have caught the flu after the vaccine? If so, it sounds like your dysautonomia would be post viral. My son had walking pneumonia before his diagnosis of POTS.

Rachel

[yogini]

You can definitely get the flu after getting a vaccine. Vaccine only protects against some strains of flu.

[looneymom]

BTW Dave, when you were young did you react to vaccines then? My son has never reacted to shots. Before he was diagnosed with POTS, he always took the flu mist. This is a live virus. Since POTS he has always taken the flu shot. The pneumonia vaccine is not a live virus. If your body will build the antibodies that will tell you if your immune system is working. If you get sick quit easily, I can understand. However, I felt like it was worth the risk with my son because he went down hill after having the flu this last year. Our cardiologist wanted the test down because my son's pre-test showed no antibodies had ever been built up for this type of pneumonia.

Rachel

[davecom]

Thanks for the replies guys. I never had a reaction to the flu shot prior to last year. Thank you in particular for the case study, Alex. It is the same strain of H1N1 vaccine that was included in the combined flu vaccine last year.

I have decided to not get the flu vaccine this year. I have no evidence to indicate that I have any kind of immunodeficiency, and I have never had a problem getting over viral infections, nor been someone to get abnormally high amounts of them (actually probably the opposite, I'm not prone to getting sick).

Since I did clearly have a reaction to the vaccine last year, and it maybe the cause of my POTS, it just does not seem worth the risk/reward ratio. I may still do the pneumonia vaccine challenge, undecided.

Thanks again for all the replies.