APS and vaccines
I just read an article that swears APS is linked to the tetanus vaccine. Is this true or a conspiracy theory?
Hi there are probably many triggers for Hughes Syndrome/APS, narrowing down exactly what the trigger is for each individual is not easy. infection, environment, reaction to possible vaccinations may well play a part, I know for my own self it would be difficult to work out which one it was. Some people do have very bad reactions to vaccines, I suspect I would not tolerate any more of them. MaryF
I read that article as well. I'm convinced it was Epstein Barr that caused it to develop in me though.
I'm sure not everyone who develops Hughes gets it due to a tetanus shot just like not everyone who gets Epstein Barr will develop it. Lots of various triggers x
If you carry a genetic predisposition to something then any number of triggers may set it off. At this point they don't know what ours is. I suspect it could be any number of things but infection would be high on the list.
Lynn I believe mine I had when young. I had a heart murmur when born.. and always had trouble with memory dating back to 2nd grade that I can recall. But it really kicked in after my appendix went gangrenous. I was very weak for four months afterwards and have not been right since then. So big infection for me as well, two urgent surgeries due to infection.
I know you live in Texas and I wonder if you have found a Specialist of APS there? I know you had symptoms and had too low INR (like so many in your country with Doctors that are not up to date with our illness or does not even know what it is).
You also have a diagnose of Fibromyalgia which could be APS also if you could see someone who knows autoimmun illnesses. Fibromyalgia is often misdiagnosed when we have APS or Sjögrens or Thyroid-illnesses (they are "cousins" and often go hand in hand).
Anything can be a trigger and start this illness. It is genetic and often run i families.
If you could see an "ear/balance"- Specialist (I did that) he might perhaps tell you that you have micro-emboli or clots that are so tiny and not seen on a Scan. Do not know if that could be a possibility though. The dizziness and hearing loss could be from your APS and not from allergy as they say. You should see someone who is willing to accept the higher INR around 4.0 as Prof Hughes recommend. He is the only one who really knows us!
Best wishes from Kerstin in Stockholm
She's in TEXAS?!?!?!?
When I answer a post I often read what has happended before to understand better and to give a better answer.
She said she was in Texas but that was from an old post 2 years ago. I assumed she lived still in Texas I did read it again today.
Can I ask what you mean with OMG!!!! ?
OMG= Oh My God!!!!!
As in, that's AMAZING!!!! I can't believe I found a fellow Texan!!!!! We can share information and help each other eliminate the "bad" doctors and combine out lists of "good" ones and HELP each other!!!
Look at her old post 2 years ago. On the first line on an answer she writes she is in Texas. Now ......... I do not know.
You could put a question on our site to find out if there is another member who is in Texax.
I wish you GOOD LUCK!
The post 2 years ago "Missing too much work"
Hey Kelly, I'm a Texan too!!!! I'm so thrilled to hear there are 2 Texans on here. I used to live in Houston and now I live near Austin. Where are you located? I'd love to get together, if you are close, to support each other. YAY. I'm so excited. I hope you are close.
Near Kerrville! Not so far away!
Just west by 6 miles. On the Guadalupe between Ingram and Hunt.
I'll be 48 soon- still have a freshman in high school. Tennis season in full swing .
Managing the Throes of this APS gig. INR not to thinness yet. Team is in SA. No specialists per se. But I believe I can be of help to you. Hopefully vise versa.
I am loosing my vision though... FYI. Thanks, APS!
I'm at a loss of about 33% so night driving in new places plus Coumadin = not so bueno!
So nice to hear from you Kelly.
I'm so sorry you have lost some of your vision. Is that because of a clot?
It sounds like you are a busy lady with kids at home still and in tennis.
I am 58 and was diagnosed in 2002. My husband and I have been living north of Austin in Georgetown since June of last year.
We have 2 children in Austin.
It sounds like phone visits might be our best bet at this time.
I'm away in Denver visiting family at the moment but will be back on Wednesday.
I'm seeing a new Dr this week and will hope to get a referral to a hematologist.
Maybe we can talk Thursday, if it's a good day for you. My number is 936-443-0999.
I look forward to our visits.
Hi!,,,I went to Texas this weekend. So didn't keep up with my posts. I moved to Hot Springs, AR about a year ago. Where do you live in Texas?
Check out Galveston. The doctors there are studying APS. I will find the clinic info and get back to you.
Thank you for posting all of this information. I have APS & Fibro as well. If I was to get on blood thinners would that help my dizziness & balance? I had to do vestibular Therapy for 4 months and it went away for about 2 years and then came back
Hope it is ok that I message you with an answer.
Hi, I have tried to message you but something is not getting through. I do not know know why!
I wonder if you have APS and who diagnosed you and where you live. I think you should put a question on our site and tell a little more about yourself and you would get good answers from our members.
Shortly I would say: We need an APS-Specialist when we have this rare illness and also as we have very thick blood our main problem is to have the blood enough thinned. When it is properly thinned at a stable INR (if we use Warfarin that is) and an INR high enough we feel much better and also secure from more clots, DVTs TIAs and strokes etc etc.
Warfarin helped my dizziness and balance and several other neurological symptoms. Prof Hughes says we need an INR between 3.5 - 4.0. Read "Sticky Blood Explained" by Kay Thackray. Stay on this site also.
Hi! There is a center on Galveston TX that studies APS. ONE OF LIKE 3 in the whole country. I moved to Hot Springs, AR now. My Dr. Keeps my INR around 3.5 now. That is better for me. I will take you advice on the ear specialist. Sounds like good advice to me!
I have read this too, but it doesn't really make much sense when virtually everyone has had a tetanus shot, but APS is considered a "rare disease."
Haven't read it, but there are so many theories abounding about so many conditions it would make your eyes water. Personally I would not avoid the tetanus vaccination because I would not like to get tetanus which can be fatal.
I believe tetanus shot is what caused mine. Within a few months of getting a tetanus shot I went from great health in great physical shape to gaining weight, bad joint pain, fatigue, and the following year had three miscarriages and then was diagnosed with APS. I saw that study and recalled getting bitten by a dog, receiving the vaccine and then all was downhill from there.
Hi GraceEllie (I think of an actress)
When you say that you were bitten by a dog, perhaps there was also blood involved and you got a shock. We can get APS from a Trauma.
When we are very shocked by an accident our blood gets thick to save us from bleeding too much probably. Especially when there is a blood-accident. Then the Tetanus on top of it - to much and APS as a result.
Just a thought. I am convinced I got APS by a blood-accident and a shock.
Hi, I have seen multiple medical articles on Pubmed stating exactly that . My daughter at age 2 got the vaccine for tetanus had a severe reaction . And since she has been diagnosed with APS, borderline SLE, and Hasimotos thyroid at Seattle children's hospital. Beware of flu vaccines as they contain phospholipid adjuvants which are also linked to APS. This was also documented in Pubmed. This is the most acclaimed peer reviewed medical sight. I have SLE and diagnosed with APS at age 47. I often have to remind physicians that we, with APS, cannot have flu vaccine. It shocks me everytime they push the flu vaccines.
Sometimes we have to take control of our health and lives and learn more about the disease than the doctors, at least in the US.
I disagree. Like everything in life and not least because we have a serious condition, we must always think about risk versus benefit. There is absolutely no proven risk factor why Hughes patients cannot be given the Flu vaccine per se, however in some individual cases their Doctors may recommend those individuals not to have it for specific reasons but generally it is safe. In fact NOT having it may well put you at greater risk because of complications when getting a bad dose of the flu.
I absolutely agree with your final sentence however.
My APS-Specialist in Stockholm wants me to take the flu vaccine and I have done that now every year.
Also I think I have less viruses than people in genaral. Triple-positive with high antibodies though.
Yes I have it every year too with no reactions and also the Pneumonia vaccine too. I think it has helped to cut down on illnesses in general and the effect of them.
I am not allowed to have it! MaryF
But you have Steven Johnsons so thats very different.
Yes, I m so lucky that my now retired doctor really began to observe the various strange things that happened to me, including films of my extreme sneezing. Alos the swelling of my hands and feet and loss of nails with anbitiotics or infections. As said above different people have different triggers, I don't believe it is one thing. I also had glandular fever and some diabolical infections in childhood. MaryF
Sorry, but I believe in science. These researchers know more than we do. When I discuss the benefits verses possible negative side effects with our medical providers, I have never had a doctor disagree with me, with the exception of one doctor at Seattle Childrens who said that the only vaccine my daughter should have is the chicken pox vaccine. When I discussed with her that the vaccine is for the man-made strain and not the wild one of chicken pox she agreed. But she still wanted her to have it because there is a small risk of blood clots with chicken pox. I will state again guys, it is okay to learn as much as you can about this condition and educate yourself. And question!! Do not blindly follow doctors, I say simply ask questions, ask para-professionals. Check out Pubmed....lots of research some proposing certain vaccines can cause APS. Don't be an addict to your disease empower yourself, live, take care. My specialist tell me often that I am the healthiest sick person they know. I thought this sight was more than a group that tells you only do what a doctor tells you, maybe some of you are different but after following this sight for years the ones "in control" have an agenda. Question evertything what are you so afraid of?
Yours in health,
Dr. Lisa M. Nelsen
Dr Nelson - The only agenda we have is to support everyone who has Hughes in a equal and consistent way but we cannot allow anyone, not even one Dr to come on here and advise people to not have a specific treatment. This may be your opinion and you are welcome to it. If you have the specific studies that show specifically that Antiphospholipid Syndrome is caused by the Flu vaccine, or that they should not have it, then I suggest that you send it to us so that we can give it to our medical advisers and they can then decide if they agree with it.
As a Dr, you will know, papers that are written are the opinion of the Drs that write them and may well be not the opinion of many or they may reflect a growing or general opinion. Some studies are early stage research which will take years to have meaning in humans.
You will also know if you have followed this site and read the posts especially in the past few months, that we do advocate patients becoming their own experts by arming themselves with as much information about this condition as possible and we help with this as much as we can. This may mean different things for different people and therefore insisting that one persons opinion on one subject is therefore the status quo is not helpful.
Im sorry if you don't like that but our regular members know that we are not a group as you describe more than a group that tells you only do what a doctor tells you and I suggest that you read some of the more recent posts which will prove that - or are you just selective in your opinions?
Im also sorry that you have a unwell child and Im sure that must bias your opinions. Im sure that it must be very stressful for you. I wish both your child and you well for the future.
I agree with what you are saying here. I have researched my own medication, some suits me that the doctors have suggested, and some does not, we are all different, but I am grateful for instance that the Plaquenil I can't take, suits my daughter very well, and that we can all tolerate Aspirin. MaryF
You did not read the post. Or you did not understand the post.
I have autoimmune issues unfortunately many, my husband, my daughter, my brother, two first cousins, one second cousin , and a great aunt. My mom died from APS and RA. If I am biased so are you and the bias helps me explore alternatives and cutting edge science so I gladly embrace my bias. I live with this every day and I am not afraid to question. I hope you will consider learning new things especially new research. The researchers have our best interest and health in mind...just because it has always been that way doesn't mean it still works or ever did. I was on this sight to stay up to date, it appears that's not mosts agenda here. I can respect that but I feel this isn't a good fit for me. I wish you best of luck! Stay well! And Kelly if you want to stay in touch let me know and I will give you my email
I think you have grossly misunderstood. This Forum is about support, be that of people with Hughes Syndrome and their families, educating everyone be that patients, the medical arena or research and raising awareness to whoever and wherever that may be. I believe that includes you regardless of your title and you are very welcome to our support but that is of course a decision for you despite your opinions. I shall leave it there.
I constantly read new research myself, which is how I came to be on a drug called LDN, and follow the particular diet I am on. However on this forum we give support and careful information, and we certainly do keep up to date. My entire family is riddled with autoimmune disease, and myself also! Our agenda is definitely to provide accurate information and provide a balanced platform. I am sure APsnotFab will verify that also. You are also not aware of how much information myself and co administrators do digest and also which medical professionals provide world wide input, and by those I mean actual medical doctors and professors! MaryF
I have been on this site for over 5 years I think. We are not medical trained here we just have APS and know how it is to have that illness.
We have Specialists who are researchers and who also learn from us. It is trial and error with APS.
What we do here is to listen and understand together with all the other members of the site. We share information and understanding and that way we learn from eachother and also feel better. I say that knowledge is power. My schoolenglish has improved a lot by reading about APS.
There is one person who knows APS better than others and that is Prof Graham Hughes.
I like this site as there are a lot of kindhearted and knowledgable persons here who are willing to fight this illness which we all have.
Kerstin in Stockholm
Not afraid of anything. I come from a family of several doctors in different specialities but that doesn't stop me from questioning my GP or consultant about treatment or medication before accepting what is on offer, although I do bow to the fact that they have had years of training that I haven't. I also use homeopathic medicine and osteopathy for treatment and sometimes acupuncture also.
As for vaccinations - have had the flu one for years and wouldn't not, I was seriously ill with flu when heavily pregnant and it took weeks to recover. But fortunately I was one of the lucky ones who didn't end up in hospital with pneumonia But I would not dream of advising others what to do - that is a matter for them to discuss with the medical profession. I had all the vaccinations available in the 1950s when polio epidemics were still around and my children were vaccinated in the 1980s and I would never have not considered any other path for their protection. But again that is a matter for discussion with medical professionals to deal with.
Don't see any agenda on here - thought people were always questioning consultations and medication and asking for advice on how to take control of their condition or conditions. Has helped me a lot.
Check out APS phospholipid adjuvants under Pubmed....it is in most flu vaccines, tetanus, and , HBV. Can cause a disease called, ASIA, APS and even lupus....
Are you in Texas?
I'm in the San Antonio area- I've been on a quick learning curve to get the best team assembled - quickly.
I've been only partially successful and it's still a work in progress. ( as you are well aware there is no real " APS specialist" per se.)
Do you mind sharing your location? I do feel if you are sharing even some of the complications along your journey that I am, I could be of help to you, and likely vise versa.
Do feel free to offer me the benefit of your failures and successes, and I'll do the same.
Very nice to hear of ," someone from my neck of the woods" even though Texas is ... well. Kinda big.
Hi, I appreciate that. I am in western Washington and have a huge problem getting care by doctors that know about APS...
I would be more than happy to share, that is if I don't get kicked off this sight for questioning things, lol!
We don not kick people off this site unless they break our guidelines, are abusive and refuse to follow our or HU rules. So far I don't think you have done that! I hope you and Kelly manage to work things out as I know, with our help, she has had a positive experience!
Found it. Adult Rheumatology Clinic at UTMB 409-772-2222 or 800-917-8906.
In late 1976 there was a panic in the US over the swine flu. Since I worked in a hospital then, I was lined up to get the vaccine. I started to get symptoms in the beginning of '77. That vaccine actually was found to be the cause of a very severe autoimmune disease Guillain-Barre in a number of people which attacks the peripheral nerves. I'm sure it was some months later that I got sick. I do have peripheral neuropathy, but that started years later.
I also had a very achy 1 day flu a couple of weeks before I got sick, and I had a car using leaded gas with a bad exhaust system. I have a friend who is a homeopath who blames it on the vaccine, but homeopathy people are very anti-vaccine. I'm not. But being born in the beginning of the 50s, I wasn't given the number of vaccines kids are given these days. Even so, I'm not the picture of health.
I expect I will never know what triggered it, but I have blamed the flu more than anything else.
Really made me mad. I died in 2016 during a cardiac cath due to this disease.
aware of the information that follows, that has just come out in the HSF newsletter today 27th October...
For more information please read: nhs.uk/Conditions/vaccinati...