Vaccinations to boost immune system

[SilverRose88]

Hi,

I just wondered if anyone has any useful advice on vaccinations for me.

Basically I've had ME since I was 11, not long developed after having the meningitis C vaccine, also allergic to tetanus.

I've been seeing a urogynae and immunologist most recently (I was dignosed with eds type 3 and pots in 2011 - they both have interests in these illnesses too). I had a cystoscopy under my urogynae because of my on-going bladder symptoms which I have had since I was little, turns out my bladder is severely infected and inflamed, I had a bladder instillation, some IV anti bs and now I'm on long term oral anti b's.

Basically due to my immune test results he said it shows I have immunodeficiency, but I also need to have pneumovax ll vaccine, then a month later a 3 in 1 which contains hib, men c & tetanus as I am v low in antibodies in them all.

He said it's not so much to cover me having them but it will hopefully boost my immune system into working better again. He wants these done before giving me IV anti bs again as he said he wants my immune system to help in fighting the infection...

I'm really unsure about having them done, I haven't had any vaccines since I was younger and I'm worried about 'rocking the boat' so to speak especially when I am so unwell.

I had mast cell testing as well (bloods) but they came back normal. We are waiting for the bladder biopsy results for mast cell to come back. But I am on a h1 and h2 blocker in the meantime, he says this should hopefully reduce me relapsing from the vaccinations...

Any thoughs on this would be a huge help, or if there are any ME drs who would be willing to give their opinion on what I should do?

For anyone who knows about immune tests my IgM was low alongside IgG3, mannose binding lectin deficiency and a couple of other bits which I can't remember off of the top of my head.

Thanks,

Becca

 

[minkeygirl]

@TaintedLuv @Kina I'm interested in this but I can't read your first paragraph. Can you please put paragraphs after every 2 or 3 sentences? Many of us cannot read so much text in one block.

Thanks

 

[SilverRose88]

@TaintedLuv @Kina I'm interested in this but I can't read your first paragraph. Can you please put paragraphs after every 2 or 3 sentences? Many of us cannot read so much text in one block.

Thanks

Sorry about that @minkeygirl

 

[tdog333]

I'm not a doctor and I don't want to tell you what to do but a lot of people with CFS are high in quinolinic acid which is one mechanism your body has to fight infection. The problem is that quinolinic acid is supposed to spike, kill the infection, and lower again. When it is constantly elevated it starts to damage the brain. Vaccines will SPIKE quinolinic acid, some of them also contain mercury and heavy metals(which is controversial so you can do your own research on that one).

 

[minkeygirl]

@TaintedLuv Thanks for the paragraphs.

I just found out my immunoglobulins are low and indicate I may have CVID. To determine if I have it I will get the vaccine challenge for pneumonia. I've been talking to @Ema so she might be able to help you.

The immunologist I saw wants me to also get HIB but I'm not too worried about that and not anxious to get any more vaccines than I need except to diagnose CVID. She is clueless about ME/CFS btw.

 

[SOC]

@TaintedLuv
While your immunologist has some very good points, I suspect he also doesn't understand immune dysfunction in ME/CFS. The right treatment for people with other conditions could be very wrong for PWME. Since you're in the UK, you are unlikely to find an immunologist who has any knowledge whatsoever about ME.

Probably the best thing you can do is read some of the research and try to educate your immunologist.

In general, ME/CFS specialists who understand the immune dysfunction we have advise against live virus vaccines, but recommend killed virus vaccines as long as you haven't had problems with them in the past.

You might be low in antibodies because your body can't produce them well. Exposing your immune system to the pathogen in that case is not necessarily beneficial and could be harmful.

I routinely get the killed virus seasonal flu vaccine at the recommendation of my ME/CFS specialist/immunologist and don't have much trouble with it. OTOH, I had the pneumovax several years ago (before I was seeing this specialist) and it knocked me back significantly for at least 6 months. I believe it is/was a live virus vaccine.

I would be cautious about getting a trivalent vaccine. That might be too much at once for the ME/CFS immune system.

If your immunologist is intelligent, concerned, and interested, he might be willing to consult with Dr Nancy Klimas, an immunologist and ME/CFS specialist.

 

[Ema]

@SOC , Pneumovax is a killed virus routinely given to immunocompromised people to evaluate for primary immunodeficiency.

None of that means that a bad reaction isn't possible though it doesn't seem to be terribly common.

I am flummoxed a bit about two mentions in about as many days of using vaccines to stimulate the immune system outside of protective antibodies to whatever is in the vaccine.

Is this a thing now?

 

[SilverRose88]

Thanks for the replies they're much appreciated - I'm really lost as to what to do. Ultimately they said if I don't respond to the vaccines then I would be considered for IVIG.

Do you have any contact details for Dr Klimas @SOC please?

 

[SOC]

@SOC , Pneumovax is a killed virus routinely given to immunocompromised people to evaluate for primary immunodeficiency.

None of that means that a bad reaction isn't possible though it doesn't seem to be terribly common.

I am flummoxed a bit about two mentions in about as many days of using vaccines to stimulate the immune system outside of protective antibodies to whatever is in the vaccine.

Is this a thing now?

Thanks, Ema, good to know. I guess I read/understood incorrectly. So much with vaccines is idiosyncratic with us. I do fine with some vaccines, but the pneumovax did me in both times. I think it's a good one to consider for PWME since we can be susceptible to respiratory infections. It just gives me problems.

Good question about "stimulating the immune system". I'm not even sure what that means in the carefully balanced system of checks and balances that is the immune system. Maybe it's just oversimplified layperson language doctors are using to explain that they are making the immune system more responsive to some pathogens...?

 

[Ema]

Thanks, Ema, good to know. I guess I read/understood incorrectly. So much with vaccines is idiosyncratic with us. I do fine with some vaccines, but the pneumovax did me in both times. I think it's a good one to consider for PWME since we can be susceptible to respiratory infections. It just gives me problems.

Good question about "stimulating the immune system". I'm not even sure what that means in the carefully balanced system of checks and balances that is the immune system. Maybe it's just oversimplified layperson language doctors are using to explain that they are making the immune system more responsive to some pathogens...?

I don't know.

But it reminds me of what @Hip was saying about the vaccine that is no longer available that helped some people. Is this the same idea?

I've been reading about the vet, Dr Plechner, too. I don't understand yet what he is saying fully about how cortisol and immunoglobulins interact but I find it interesting.

 

[SilverRose88]

@Ema So could I get away with having 'just' the Pneumovax ll vaccine instead of Pneumo plus plus hib, men c & tetanus? In terms of if they are wanting to see my response? They're wanting to give them a month apart from each other (the pneumo then hib/men/tet). I just feel at a loss as to where to seek advice from as they aren't specialists in ME. Is it even possible to speak to Dr Klimas do you know?

 

[Ema]

@Ema So could I get away with having 'just' the Pneumovax ll vaccine instead of Pneumo plus plus hib, men c & tetanus? In terms of if they are wanting to see my response? They're wanting to give them a month apart from each other (the pneumo then hib/men/tet). I just feel at a loss as to where to seek advice from as they aren't specialists in ME. Is it even possible to speak to Dr Klimas do you know?

I don't understand how giving you a vaccine will somehow perk up your immune system so it makes it more responsive to antibiotic treatment, if I have understood what you have written correctly.

Giving a Pneumovax is part of an assessment for Primary Immunodeficiency Disease...but this is a specific protocol of measuring pre and post antibodies. If you have PIDD, you won't produce antibodies after vaccination. That's the whole point of the test...not to perk up the immune system. It's unable to be perked because of a deficient amount of immunoglobulins.

I think the benefits of being diagnosed properly with PIDD outweigh the risks involved with the vaccine in that case since there are rarely reports of harm (except poor @SOC).

But I don't understand the giving of vaccines seemingly willy nilly in the ME/CFS population. We don't even know if it is a good idea to stimulate or suppress any or part of the immune system at this point, I have no idea what these doctors are trying to do here based on what has been said and it is not part of any typical process I have seen thus far. I would have many many more questions that would need to be answered before moving forward.

I think it would be very hard to speak with Dr Klimas without being an established patient. That said, you could certainly try calling or sending an email. Or possibly having your doctor initiate contact.

Dr Klimas
Kendall Village Center, The Professional Arts Ceneter, Suite 111, 8501 SW 124th Ave, Miami, FL
(305) 243-1661

 

[heapsreal]

In the past some vaccines have been used in cfs/me for their immune modulating effects. Staphylococcus toxoid and also mycobacterium vaccae which has been used as an immune mod for cancer, asthma, eczema. Doesnt seem to be effective for everyone but then again what is?

I found this info in the book 'reviving the broken marionette' and has references etc

 

[SOC]

I think the benefits of being diagnosed properly with PIDD outweigh the risks involved with the vaccine in that case since there are rarely reports of harm (except poor @SOC).

Hey, even I'd take the Pneumovax II vaccine if it would get me proper diagnosis and treatment for PIDD. I'd have to plan for the relapse, but it would be worth it, imo.

ETA: I wouldn't try to contact Dr K as a patient, but she might be willing to educate a fellow immunologist who was interested, so having the doc call/email would probably be better.

 

[alex3619]

The majority of vaccines stimulate a Th2 response. We usually have too much of that. Some, however, stimulate a Th1 response. I suspect those might be better tolerated.