posted
I acquired an Ill-defined degenerative auto-immune disease after getting the LYMErix vaccine.
Severe Osteoarthritis, autonomic nervous system damage, cardiac issues, mixed connective disease problems, many overlapping MS symptoms, degenerative musculoskeletal problems.
The problem is all damage from an auto-immune disease is present, but no makers in my blood to show doctors what to treat. I don't have much time left. I can't work, cannot breath well, cannot sleep due to intolerable pain. GI issues and sever reactions to medication limit my ability to treat symptoms.
I'm looking into metheltrexate as an immune modulating drug, but it is a risk. I tried IVIG but was hospitalized after it with a life-threatening reaction.
Is there anybody out there who knows of a doctor that has had experience treating people with post LYMErix syndrome?
Is there anybody out there who had a problem like me after the vaccine that was helped by any kind of treatment?
Posts: 2 | From Stamford | Registered: Mar 2013
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Any kind of information at all is appreciated, truly, truly appreciated, from the bottom of my heart.
Posts: 2 | From Stamford | Registered: Mar 2013
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I had the dreaded vaccine as well - 3 doses back in 1999 and 2000. The only thing my LLMD would offer about the vaccine is "that messed you up even more"...
The only autoimmune marker that comes up for me is thyroid antibodies.
I wish I knew of a doctor who fully understood what that vaccine did to people. Probably too late to reverse any of the damage.
Posts: 749 | From State full of ticks | Registered: Dec 2008
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posted
Have you thought about LDN to modulate the immune system?
Posts: 749 | From State full of ticks | Registered: Dec 2008
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
Hi CJC:
I have a friend being treated by Dr. K, neurologist in CT not too far from you.
He too had the Lymerix vaccine.
Don't know much else as we haven't talked too much on it.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
Some have used homeopathy to help with vaccine injury.
Maybe a good ND could help you.
A google search brings up a lot of info.
Take care.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Have you been checked for the methylation defect mutations? It sounds like maybe the reason you reacted this way to the vaccine and to subsequent treatments might be related to genetic reasons. Isn't that what was said about the vaccine, that it created problems for people with a certain genetic configuration?
If you could get to the bottom of this, and I don't know the details but there have been many posts here on the subject, then maybe some treatments might work better.
Low dose naltrexone, as someone else suggested, is being used by some with lyme for the purpose of modulating the immune system. There have also been other things, herbal for instance, that have been suggested also, don't know the details. Didn't Bea of someone else mention ashwaganda? There is another newer product, but my reaction to it made me think it revved up the immune system, not calmed it.
Anyway, good luck. It sounds like you need to move on this quickly.
Posts: 2888 | From USA | Registered: Mar 2004
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
CJC, I suggest you use the "Search" function here on LymeNet to find all of the old posts that discussed this.
Just click on "search" near the top of the screen. The, for key words, use "lymerix" and you will get 6 pages of posts that used that word in the post.
Here is just one such post I found for you when I did such a search:
It appears that the posts about LYMErix are mostly back in 1999 or so. Still, there is info in them that will help you. And, you can privately write to those who say they had a bad reaction to the vaccine. Just click on the envelope icon above their post to write to them privately.
Some folks may not come on LymeNet anymore, but some may still come on. If you click on their name, you can see if they have posted recently.
Welcome to LymeNet. I hope we can get you pointed in the right direction. It certainly seems to me that going to a lyme doctor would be a logical and good first step.
If you want the name of a really top notch lyme doctor, write to me privately and I will give it to you. So sorry this is going on. I hope it is lyme disease.
If you have not looked into lyme disease yet, I strongly suggest you read the following document:
Pages 9-10 give you a list of just some of the possible lyme symptoms. Lyme can attack any bodily system. So, when a person has at least 2 bodily systems not functioning properly, it really pays to seriously consider lyme disease. VERY few diseases can attack many bodily systems, but lyme is one of the ones that can. It can cause all of the problems you have named.
In addition, I recall hearing that the Lymerix vaccine was taken off the market because it gave lyme disease to people. You can't go by a negative lyme test, as you will see on page 7 of the Guidelines. Instead, only a doctor who specializes in lyme disease (meaning, has a medical practice that is 100% lyme patients) can give you an expert opinion as to whether or not this is lyme.
Let me know if I can help you further.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
[QUOTE]Originally posted by poppy: [QB] Have you been checked for the methylation defect mutations? It sounds like maybe the reason you reacted this way to the vaccine and to subsequent treatments might be related to genetic reasons. Isn't that what was said about the vaccine, that it created problems for people with a certain genetic configuration?
If checking on genetic detox ability is an issue at all, and I don't know whether it is, but if it is, I recommend the detoxigenomic liver bloodtest through Genova Diagnostic Labs in NC -
the test will show genetic ability to detox in 8 pathways for Phase I liver detox, and 4 major drains out of 10 for Phase II, including methylation.
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
I had two doses of the vaccine. Within a year after the second dose, I developed the same types of sypmtpoms.
I believe that the vaccine brought out lyme that my immune system was keeping in check. I have treated with extensive abx, and some alternatives, but, nothing gets rid of these symptoms. The vaccine has been suspected to cause treatment-resistant lyme, which I believe is what I have. Abx make me feel a little better while on them, but, when I go off, I go back to feeling worse.
I tested positive for HLA-DR4, but, my LLMD at the time did not believe that my symptoms were caused by the vaccine, because I had no swelling in the joints. She believed that I strictly have lyme.
I am no longer seeing an LLMD, due to financial reasons. My PCP was treating me for a positive bartonella test, but, she is stopping the abx, so I suspect I will backslide on any improvements I have gained.
My symptoms at the moment are lots of cracking joints and pain, heart issues (psvt), neurological issues-word retrieval problems, buzzing, tingling, etc., and muscle pain (knots, trigger points) and twitches.
I think I may try the Cowden program, since I can't afford an LLMD. I think a natural approach may be better for our malfunctioning immune system.
Posts: 418 | From NJ | Registered: Sep 2007
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posted
I do not recall swelling ofthe joints being mentioned here often (as a Lyme symptom) I think only a few get that
Posts: 366 | From Europe | Registered: Nov 2008
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posted
The llmd said that the people that had reactions to the vaccine during the trials had joint redness and swelling as part of their arthritic sympoms. Mine are not hot or swollen, just painful and cracking a lot. I don't believe what she said, I think that the vaccine definitely brought out some type of reaction in me, since I had all these things happen within a year of having the vaccine.
I think that in my case, I had lyme in my system for many years, but, my immune system kept it in check. I believe that the vaccine damaged my immune system, so that the lyme was able to take hold, and ruin my life.
It seems that no doctor really specializes in treating people that have had adverse reactions to this vaccine. And, there has been no research into helping people that have been injured, because that would be admitting that the vaccine actually has caused injury in people. The court has already decided that it hasn't, so those of us who have been injured by the vaccine are screwed, and have no hope of recovering from it.
Posts: 418 | From NJ | Registered: Sep 2007
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
CJC has not been back? this whole thing is very upsetting to me...i have the HLA 4 and 2 genes and my llmd said 1/3 of population has that and if you have it and get the vaccine you get bad arthritis that cant be stopped
but it can be treated the way they treat normal osteo arthritis
so take good quality cosamine cosamine ds it will help you make as much cartilage as possible and slow down your disabilities-the cracking and pain
and ibuprofen for pain
and read about what to do for arthritis...except i would stay away from steroids
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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