To vaccinate or not me and my children

[nina_online]

Thanks, everyone.

Well, I don't think I will fully vaccinate, then. Now I just have to figure out which vaccines to do and which not. I guess I will do Hep-A, since we are going to Mexico and the MEA website poll returns only 1%. Hep B I might want to skip.

But there are reasons I'd like to stay with our current clinic. They allow exceptions to their full vax policy for "compromised immune systems, or documented adverse reactions to vaccines." I can't think of any way to prove the compromised immune system. I don't suppose there's any study or report on inheritance of CFS?

The CMO report says
A few case reports have suggested that CFS/ME has occurred
after immunisations, though intercurrent events, including infection, might have
played a part in the disease process. It is biologically plausible that some processes
seen after infections could also occur after immunisations, but this has yet to be
confirmed by a good quality cohort study in the case of CFS/ME. Current advice
to avoid immunisations during infections is designed to avoid such triggering.

and

The familial incidence of CFS/ME is slightly higher than expected,
which suggests that familial factors may play a part in susceptibility.Twin studies
suggest a hereditary component but family environmental factors also may have an
influence.

So neither of those statements get me very far. :-(

 

[Amaya2014]

@nina_online I share your concerns with vaccinations. It is my belief that the live influenza quadrivalent I received in late 2013 was the trigger for ME/CFS in me.

That being said I was reluctant to get another vaccine but had no choice as I was active duty military. I did receive another vaccine the next flu season but it was not live. I tolerated it fairly well I suppose as my condition did not worsen.

My experience made me apprehensive for my son but I agreed to his vaccination (for his and others greater good). It was not live and I waited in prayer and he has not shown any ill affects.

Here is a link to vaccine adverse reactions from the HHS. Ultimately, it's a personal decision but I agree more with the "for the greater good" argument.
https://vaers.hhs.gov/data/data

 

[barbc56]

@nina_online

Hate to show my ignorance but what is the CMO report? The only site I could find was surveys for businesses. Did I miss something?

I have mixed feelings about pediatricians who refuse to see children who haven't been vaccinated. I understand the the reasoning but think there are other solutions such as separate waiting rooms or wearing a mask.

@Amaya2014

I also believe in the greater good.

I am very sensitive to medications, especially as I get older but knock on wood have not reacted to vaccines other than a sore arm. Anecdotal but just wanted to share my experience.

Infants may run a low temp after vaccines but that may mean the shot is working. Emphasis on low. If it was high, it's probably prudent to see a doctor.

One of the scariest situations for me was when I was pregnant I had a bloodtest and it turned out I didn't have antibodies for the type of measles that cause birth defects. Children did not get the measles shot when I was growing up. I was teaching at the time and the school policy was that students were required to be up to date with vaccinations but some students were allowed to enroll but had a time limit to get vaccinated. So that was somewhat reassuring. After giving birth I got the vaccination and about a week later did have a rash but was not sick.

 

[nina_online]

@barbc56: re CMO, see Charles Shepherd's posts above.

 

[charles shepherd]

@nina_online

Hate to show my ignorance but what is the CMO report? The only site I could find was surveys for businesses. Did I miss something?

I have mixed feelings about pediatricians who refuse to see children who haven't been vaccinated. I understand the the reasoning but think there are other solutions such as separate waiting rooms or wearing a mask.

@Amaya2014

I also believe in the greater good.

I am very sensitive to medications, especially as I get older but knock on wood have not reacted to vaccines other than a sore arm. Anecdotal but just wanted to share my experience.

Infants may run a low temp after vaccines but that may mean the shot is working. Emphasis on low. If it was high, it's probably prudent to see a doctor.

One of the scariest situations for me was when I was pregnant I had a bloodtest and it turned out I didn't have antibodies for the type of measles that cause birth defects. Children did not get the measles shot when I was growing up. I was teaching at the time and the school policy was that students were required to be up to date with vaccinations but some students were allowed to enroll but had a time limit to get vaccinated. So that was somewhat reassuring. After giving birth I got the vaccination and about a week later did have a rash but was not sick.

Nina

CMO report = (UK) Chief Medical Officer's Working Group Report

This is a report that was prepared by a multidisciplinary Working Group (CS was a member) for the UK Chief Medical Officer of Health at the time (Professor Sir Liam Donaldson)

It was published in 2002

Although I obviously have a conflict of interest, it was a good report at the time and contained a lot of useful information relating to clinical assessment and management

The chapter on children, where the medical input largely came from Dr Nigel Speight, is one of the best reports to date here in the UK on children and adolescent ME/CFS

The psychiatrists on the WG, including Professor Peter White, walked out in the final lap and refused to sign/endorse the report - mainly because they objected to the content of the section covering CBT, GET and Pacing - where we summarised research evidence along with clinician and patient evidence

Well worth a read……..

Can be downloaded from the document archive section on the MEA website:

http://www.meassociation.org.uk/how-you-can-help/about-the-mea/policies-and-documents/

 

[barbc56]

Thanks! Will definitely read this!

 

[Rvanson]

Hi everyone,

I've been searching through the forum to read what people think about vaccinations but came to nothing conclusive. I looked at some of the scientific research, but I don't have access to PubMeds I can't read the full papers. It seems like some of the research, e.g. linking vax with diabetes-1, had since been reversed. Some of the CFS doctors I have seen recommend the flu shot and others don't. I don't have a current CFS doc to ask about vaccines.

The clinic where my children (ages 9 and 12) see their pediatrician is now requiring full vaccinations. My children are partially vaxed. I went to see another pede who is flexible about vaccines, to see what she thought about vaccinations for my children given that I have CFS. I hope they don't get CFS and don't want to do anything to trigger it. (FYI, one daughter has ADHD and the other, Anxiety disorder. They and I seem like candidates to have a methylation disorder, although I do NOT have the MTHFR genetic mutation. I doubt my husband does, bc he has no related health issues.)

Her points were:
- The issue is the live vaccines, so don't give more than 1 live vaccine at the same time (and she made up a vax scheule for us to follow).
- They are not young children / babies, so less likely to have neuro effects.
- They have had some vaccines, including rotovirus and flumist, both live vaccines, without reactions.
- Some of the diseases, like Hep A, can leave you with diarrhea, etc, for weeks.

About my "type" of CFS: I have had CFS probably since adolescence, and I am 50 now. I don't recall anything virus related. My CFS is mostly fatigue (no sore throat, etc), sleep disorders, thyroid and adrenal problems. I always felt like the world was moving too fast for me. I also have significant treatment-resistant anxiety and major depression. I did have a lot of mercury fillings as a child, but I did a SPECT scan and they said I didn't have toxic brain. I had extra vaccines (though not as many as kids get now) because my dad was a diplomat and we traveled abroad. My brother had diabetes type 1 since age 3. My sister has CFS.

We are going to Mexico, and Hep-A and typhoid are recommended. Also it would probably be recommended that we update our tetanus. My husband and I would theoretically do this, too.

What is the current consensus, if there is one, on vaccinations for people with CFS, and for their children?

Thanks,
Nina

I personally wont and never have taken a flu
shot. The risks outweigh the benifits for me.
I did get the Shingles shot last year, however,
since I had chicken pox as a child.

 

[panckage]

Please allow your children to be vaccinated. There is a far higher chance of something bad happening if they are not vaccinated.

 

[nina_online]

at least one study into us has shown that one in twenty of us believe we actually got ME/CFS from being vaccinated.

taniaaust1, do you have any idea what this study might be? I'm asking because when talking to doctors, they want to see studies, not "someone on a forum said..."

a childrens risk of getting me/cfs when a mother has me/cfs, according to at least one well known me/cfs specialist would already be one in four according to his statistics of his ME/cfs patients and thier family

Could you tell me more about this as well? Is this from Dr. Shepherd? I'm actually going to start a new thread on this, so maybe reply over there.

Thanks so much,
Nina

 

[barbc56]

I think the general rule should stand for those who are immune compromised and other health conditions that mean you shouldn't get vaccinated. whether you have me/cfs or not. If someone gets a reaction seeing a doctor would be prudent to check this out.

This might lead to actual evidence that could be collected which is stronger than ancedotal reports. Sorry @charles shepherd as I have to respectfully disagree with your use of observations. However observations or ancedotes can lead to hypothesis.

Edit

Actually, after rereading your posts I think you are saying the same thing about the limitations of this type of data. But at least it's a start.

 

[Eeyore]

@nina_online - In general, I'm very pro-vax and think the benefits outweigh the risks for most if not all patients.

That said, I have relapsed acutely twice from vaccinations - timing was quite clear - and in each case it took months to years to revert to normal.

My experience is that live attenuated vaccines do not cause problems. The dead vaccines cause problems - I suspect the issue for me at least is the immune overactivation caused by the body's reaction to the aluminum salt adjuvants used in dead vaccines. The live vaccines are more like a REALLY weak infection (weaker than a cold) - so I do not think they pose significant risk. I would definitely vaccinate for serious diseases. For flu, I think I'd do the inhaled nasal version as it's live attenuated and not killed and thus doesn't require adjuvants.

In my own body, I do have some understanding of what is happening. I have specific genetic markers associated with rare but understood diseases which prevent me from effectively resolving the inflammatory response. I have reason to believe these occur with significantly greater frequency in ME patients based on looking at 23andme data for about 30-40 patients.

Keep in mind this is all preliminary and not established fact - so take it with a grain of salt. I'm trying to give you the best info I can in an area where well supported scientific knowledge is meager.

Your doc may not be willing, but with heat killed vaccines, I would recommend being ready to downregulate the immune response if the reaction is bad (for example, dexamethasone, a corticosteroid that penetrates the BBB).

One ME doc I went to said that he did not recommend flu shots for his patients unless they'd had them before and not had a reaction. That might be a good gauge. Either way I'd recommend the live attenuated as safer. If you don't get a bad relapse or ME from each minor 24 hour cold, then it's unlikely you'd get anything from these extremely attenuated strains.

Dr. Byron Hyde (google - you can even read his book for free, which is like 1k pages) writes that a number of his patients had problems with the Hep B vaccine. This is not a live vaccine - it's not even inactivated. It's a recombinant subunit vaccine - which means there's no plausible way it can cause infection. They just take the genes for the outside of the virus - not enough to make a whole virus - and grow them in bacteria by transfecting the genes into the bacteria (recombinant tech). Hep A vaccine also uses a similar technology, as do the HPV vaccines (gardasil, cervarix, and the new gardasil-9).

I had the hep B vaccine in college a few years after I got sick, all 3 shots, and had no bad reactions, and since then have been tested and decades later have good immunity. I also had hep A vax in college and no adverse reaction. Whatever it is, it's not completely predictable. My grandfather nearly died from a tetanus shot - and they couldn't figure out why - although I might now be able to shed light on it based on some genetic studies.

This is a jumble of conflicting and partial info because I cannot give you a definitive correct answer - I don't think anyone can - but I thought I'd share what I know.

I would urge you to not underestimate the severity of the diseases that these vaccines protect against. There are reasons we have these vaccines. The diseases were horrible. I definitely would not skip vaccines for whooping cough, the MMR for measles/mumps/rubella, and a bunch of others that are very serious. Also, it's not unreasonable to hold off on vaccinating babies against diseases that they have almost no chance of encountering in the near future if you believe they are at elevated risk, but don't forget later! If a baby gets HPV that baby has bigger problems... that shouldn't happen. Similarly, Hep B is blood borne or sexually transmitted - similar to HIV, but actually much easier to spread, and can be fatal. Hep A is often acquired through food - so anyone can get that.

Talk to your doc though. Do not read all the crazy anti-vaxxer sites. If you didn't have a family history of ME, I would say the evidence is overwhelming that they are likely to be safe. Even with ME, I still get vaccines to this day because some of the diseases they prevent are simply too serious to ignore. Measles is NOT a joke and it is EXTREMELY contagious. This is why many pediatricians won't take patients who don't get the vaccine - once the sick measles patient comes to the office, there is infectious measles virus floating around for the rest of the day, at least, even after the kid is gone, and there are young children there who are too young for vaccines. So it's not safe for the other patients for pediatricians to allow an unvaccinated measles patient in their practice. Mumps causes sterility in men, and rubella causes birth defects. Any of them can, sometimes, kill. Chicken pox leads to a future risk of shingles - often many decades later. Those of us who had the virus and not the vax have low levels of activity of the varicella zoster virus for life (VZV or HHV3) - when the immune system weakens, out it comes.

I can tell you that each time I've had a vaccine I have recovered, even if it took a while. Recovery in my case is sped up by corticosteroids (dramatically). You can't take those right after a live attenuated - but your doc will know this and they are rx only.

Tricky decisions but don't underestimate the severity of the diseases against which we vaccinate.

 

[u&iraok]

There's been a couple studies of normal flu vaccines in ME patients. Both showed objective abnormal immune reactions and corresponding reports of symptoms, though the vaccination was also effective.

But basically there are immune side-effects occurring in ME patients which last at least a month (the end of the longer study), and they don't really know why it's happening, what it's doing, or when it will end.

So personally I'd stay away from a flu vaccination. But the ones inoculating against very serious illnesses are probably worth it.

I got the flu shot as a requirement on my job for a period of about 6 or 7 years with I believe 2 non-consecutive years during that time that I didn't get the shot. The years that I got the flu shot I didn't get the flu but the years that I didn't get the flu shot I got a really bad case of the flu each time. It was some kind of weird re-bound effect.

I also got bronchitis for the first time in my life 2 1/2 weeks after the first flu shot, then a bad case of bronchitis 6 months later, then bronchitis every year after that up until 1 year after I stopped having the flu shots altogether.

At this time is when my health started going down hill before I got ME/CFS--got candida, MCS, cognitive problems, adrenal problems, hormone problems.

 

[u&iraok]

If you do get a flu vaccine, here is Dr. Russell Blayock, M.D. a retired neurosurgeon's recommendations to reduce autoimmune reactions to the flu vaccine only but don't use if you have the flu:

1. Place a cold compress on the site of the injection immediately after the injection and continue this as often as possible for at least two days. If symptoms of fever, irritability, fatigue or flu-like symptoms reoccur -- continue the cold compresses until they abate. A cold shower or bath will also help.
2. Take fish oils -- I recommend the Norwegian fish oil made by Carlson Labs -- it has the correct balance of EPA and DHA to reduce the cytokine storm. The dose is one tablespoon a day -- if severe symptoms develop -- two tablespoons a day until well and then switch to one tablespoon a day. Children -- one teaspoon a day.
3. Curcumin, quercetin, ferulic acid and ellagic acid as a mixture -- the first two must be mixed with extravirgin olive in one teaspoon. Take the mix three times a day (500 mg of each)
4. Vitamin E (natural form) 400 IU a day (high in gamma-E)
5. Vitamin C 1000 mg four times a day
6. Astaxanthin 4 mg a day
7. Zinc 20 mg a day for one week then 5 mg a day
8. Avoid all immune stimulating supplements (mushroom extracts, whey protein) except beta-glucan -- it has been shown to reduce inflammation, microglial activation and has a reduced risk of aggravating autoimmunity, while increasing antiviral cellular immunity.
9. Take a multivitamin/mineral daily (one without iron -- Extend Core)
10. Magnesium citrate/malate 500 mg of elemental magnesium two capsules three times a day
11. Vitamin D3:
    1. All Children -- 5000 IU a day for two weeks after vaccine then 2000 IU a day thereafter
    2. Adults -- 20,000 IU a day after vaccine for two weeks then 10,000 IU a day thereafter
    3. Take 500 mg to 1000 mg of calcium citrate a day for adults and 250 mg a day for children under age 12 years.
12. Avoid all mercury-containing seafood
13. Avoid omega-6 oils (corn, safflower, sunflower, soybean, canola and peanut oils)
14. Blenderize parsley and celery and drink 8 ounces twice a day
15. Take Jatoba tea extract (add 20 drops in on cup of tea) one day before the vaccine and the twice a day thereafter. (you can get it at http://www.iherb.com/Amazon-Therapeutics-Jatoba-1-oz-30-ml/14429?at=0) It is inexpensive.

 

[barbc56]

@u&iraok

Do you have a url for thr quote? I'd like to bookmark it with the original. Thanks!

Edit. Found it!

http://www.rense.com/general87/vaccin.htm

 

[Eeyore]

I'd be careful with those megadoses of vit d3. It's a fat soluble vitamin, and you can take too much. (In fact, Vitamin D3 is used as a mouse poison - they eat too much d3 and they develop hypercalcemia and kidney failure).

In the long term my endo says about 5000iu is what adults should take, but it should be tested if you are taking that much to make sure it's not too high. For kids, the doses will vary tremendously and I'd ask a pediatrician - a 17 yr old is not dosed like a 17 month old).

 

[barbc56]

'd be careful with those megadoses of vit d3. It's a fat soluble vitamin, and you can take too much. (In fact, Vitamin D3 is used as a mouse poison - they eat too much d3 and they develop hypercalcemia and kidney failure)

Yikes, this is why I have to be careful when supplementing with D3, even though I am deficient. My kidneys leak too much calcium and this calcium is taken from your bones which has led to osteopenia. My calcium levels in the blood are normal. So I take small doses of D3. I can't take the calcium supplements at all but for this you increase your dietary calcium. Slowly my D3 levels are rising. I take a thiazide diuretic and this should halt any deterioration of the bones and frequent kidney stones.

So yeah, you have to be careful. Not everyone with kidney stones has this, so it's important to talk to your doctor, whatever your health status.

Frankly, I think Blaylock's list is ridiculous.

I found the citation for his approach here.

 

[Sushi]

So yeah, you have to be careful.

Have you tested Vit D 1,25? That can indicate if D3 is being metabolized well. High D 1,25 sometimes points to a rise in calcium.

 

[Eeyore]

My endo tests it, at least yearly, and I've been stable. He only tests D2/D3 levels, not calcitriol - unless there are problems with the kidneys then this usually is sufficient. I've been stable on 5000IU for a while and generally run about 60-70 and I'm an average sized adult male.

Having enough Vit D3 is important for many reasons, including bone density (especially in post-menopausal women). The VDR (Vitamin D Receptor) is important in controlling inflammation, and that's why Vectical and Dovonex are used on inflammatory skin diseases like psoriasis.

The vast majority of adults are fine at 5000IU / day, but not everyone. Siince it's fat soluble, it can take many months or even years to come up to a steady state with daily supplementation. Don't expect it to go up fast. Testing too frequently is pointless.

 

[barbc56]

Have you tested Vit D 1,25? That can indicate if D3 is being metabolized well. High D 1,25 sometimes points to a rise in calcium.

Yes. Maybe both kinds? Are there two types of vitamin D tests! Fuzzy memory today.

I see an endocrinologist who specializes in metabolic bone conditions.

Thanks!

 

[barbc56]

The VDR (Vitamin D Receptor) is important in controlling inflammation, and that's why Vectical and Dovonex are used on inflammatory skin diseases like psoriasis

Interesting. My mother had fairly severe psoriasis outbreaks. It can be quite miserable.