The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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What the H*** is Going On? I feel like I'm dying.

Discussion in 'General ME/CFS Discussion' started by HelloGoodbye, Mar 22, 2018.

  1. HelloGoodbye

    HelloGoodbye

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    I don't know what to do at this point. I had the HEPATITIS B vaccine three months ago and had all sorts of symptoms since then that were relatively manageable... I could work at 50% and come home and rest and that was it.

    I've been to the rheumatologist, who referred me to the immunologist, who referred me to the neurologist, who referred me BACK to the rheumatologist (!!). My GP has been of no help, thinking my symptoms were from anxiety since the onset. I see another internist tomorrow -- which will most likely produce nothing.

    Since Sunday, I have started to feel "flu-ey" with new GI symptoms (stomach cramp and aches), some dry skin, and worsening depersonalization. I've gotten worse and worse since Sunday, and now I feel like absolute death. I feel AWFUL... to the point where I've finally called all of my closest friends over the years to tell them everything I'm going through and that anything is possible at this point and to keep me in their thoughts. My parents are driving in tomorrow to stay with me for the week -- I was bawling my eyes out facetiming them. I've decided that I will most likely withdraw from my residency that I worked so hard to get through.

    I believe I may have macrophagic myofasciitis, as awfully hard as that pill is to swallow. I remember hearing max08 talk about it. The odd thing is, my brother had a negative reaction to the FLU VACCINE three years ago and missed 9 months of school. He has told me that my constellation of symptoms resemble his and he had some sort of auto-immune reaction/POTS/dysautonomia/small fiber neuropathy and maybe MCAS?. He was treated with plasmapheresis and scig among other treatments. I want to believe that that is what is going on with me, however, I can't help but think MMF seems more likely (and untreatable). The Hep B vaccine is a bigger bitch than the flu vaccine. I think the worst in these situations. Could these all be autonomic related? I will say my heart rate jumps from 70 laying down to 100+ while standing for several min.


    I don't know why I posted this... I feel lost. If anyone has any advice or ANYONE that they can direct me to (maybe with personal post-vaccine experience OR an expert), I would greatly appreciate it. I feel awful... I need help. I don't know if I'll get through this.

    Maybe I coincidentally just have the stomach flu but I highly doubt that.

    My Initial Post - http://forums.phoenixrising.me/index.php?threads/post-vaccine-onset-help-please.57516/#post-953853
     
    Last edited: Mar 22, 2018
  2. HelloGoodbye

    HelloGoodbye

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    Countrygirl likes this.
  3. mariovitali

    mariovitali Senior Member

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  4. lnester7

    lnester7 Seven

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    That is the definition of POTs (electrophysiologist is the type of cardiologist that can treat you and test you). You can google poor's men tilt table test, you will better off if you can bring a diary of BPvs HR for a few days.
     
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  5. Intuition

    Intuition Dance with ME

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    Have you had an ENA (looking for antiJo1) and CK level. With your skin rash and muscle symptoms dermatomyositis springs to mind. As with other connective tissue diseases this can cause systemic symptoms including severe fatigue and dysautonomia (eg POTS).
     
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  6. Hip

    Hip Senior Member

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    Sorry to hear you are doing so poorly at the moment.

    In this paper, they say that the average time interval between vaccination and the onset of macrophagic myofasciitis (MMF) symptoms is 7 months, and that the fastest onset they came across was 0.5 months (two weeks):

    In your other thread you said that you had your first hepatitis B vaccination on 10 Dec 2017, and 4 days later then on 14 Dec you began experiencing substantial weakness of the muscles. So that onset is extremely fast by normal MMF standards, so I wonder if MMF fits your circumstances.

    However, people who develop ME/CFS from a vaccine shot often get hit very quickly with the symptoms, in a matter of days, as you did.



    I am also wondering whether your needle stick exposure and general exposure to an ME/CFS patient on 27 Nov 2017 may have played a role. As a dental professional, you conceivably could have been exposed to ME/CFS-associated viruses just by exposure to normal respiratory secretions, as well as the needle stick exposure.

    In the case of virus-triggered ME/CFS, you either get rapid onset, where the symptoms of ME/CFS hit in full within a timescale of days; or gradual onset, where the symptoms slowly appear over several months.

    The main viruses linked to ME/CFS coxsackievirus B, echovirus, Epstein-Barr virus, HHV-6, cytomegalovirus and parvovirus B19, and ME/CFS specialist doctors will normally test you for these, to see if you have high antibody titers to any of them. High antibody titers suggests that theses viruses may be behind your ME/CFS, and in which case the doctor may prescribe appropriate antivirals.

    This document may be of help: roadmap of chronic fatigue syndrome treatment.
     
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  7. junkcrap50

    junkcrap50 Senior Member

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    I'm so sorry to hear your story. Breaks my heart, especially since nearly everyone disbelieves that vaccines can cause any sort of harm.

    I don't have much to suggest as what's going on. But will try to point you in a few directions.

    Forget about mainstream medicine docs. Few will help. Sure, some might and some might be very good doctors who will think outside the box, take a real concern, and be willing to dig to find the truth (rather than just ruling out the top most common diseases they see). But, those mainstream medicine docs are like 1 in 100. You'd waste too much time searching for one among mainstream medicine docs.

    I would turn to Integrative Medicine doctors (some may label themselves as Alternaive or Functional Medicine). They are still MDs but focus on chronic diseases and diseases that are difficult to diagnose. You'll have better odds of finding a helpful doctor there. And when you find one, demand they do cast a huge, wide net and test for nearly everything.

    I would also consider looking at doctors who deal with autism. Autism doctors are the only ones I know of that have experience with vaccine caused illnesses or vaccine damage. I'm not saying you have autism. But they see a lot of vaccine damage and may have more experience than any other type of doctors. They also think outside the box.

    It seems you have more of an immune reaction than full blown CFS yet. But CFS does come in different presentations. I would try to rule out somesort or rare immune response or disease first. But I don't know of any clinical immunologists, which is what you would need.
     
    Last edited: Mar 23, 2018
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  8. You work in the dental profession - have you had any exposures to mercury? This could be from either installing or removing amalgam fillings. And/or do you have amalgam fillings yourself?

    The symptoms of mercury toxicity and ME/CFS are extremely similar. Mercury has wide ranging negative health effects.

    In one of your posts, you mentioned tremor, which is a mercury symptom.
     
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  9. Hip

    Hip Senior Member

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    Yes, and dermatomyositis is linked to parvovirus B19 infections — a virus known to cause ME/CFS.

    Polymyositis is triggered by coxsackievirus B in mouse models (refs: 1 2), and CVB is strongly linked to ME/CFS.

    These are the viruses that ME/CFS doctors will usually test you for.
     
  10. HowToEscape?

    HowToEscape? Senior Member

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    “nearly everyone disbelieves that vaccines can cause any sort of harm."

    Sorry, that’s bull. Any medicine that is effective also has the potential to cause some degree of harm. The only medicine that can be of only benefit and never harm is called magic, and that works only in our imagination.
    None of that is any great secret, and the benefit versus harm quandary is taught in every single medical school — except for institutes of fake medicine, which teach things such as shaking distilled water to cure every disease known to man.
     
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  11. HelloGoodbye

    HelloGoodbye

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    Thank you all for the responses and the direct messages... I'm currently in crisis mode with my parents here, essentially helping me with basic life needs. All other aspects of my life (work, social life, etc.) as little as they were during the first 3 months, have completely stopped. I still feel awful... very weak, dizzy (not severe but mild)/depersonalization, significant dried skin everywhere (including face and lips). I have been documenting my B.P. from laying down (70-75 BPM) to standing up (105-115 BPM). Now I don't know if this is necessarily from POTS/dysautonomia or from the fact that I am just feeling awful.

    @mariovitali I have not had the 23andme genetic testing done, however, I have just bought the kit. Regarding the list, I had no other diseases or infections prior to the vaccine. I was perfectly healthy. No past surgical history, medications, hospital stays, etc.


    @inester7 As mentioned above, I have been documenting my B.P. from laying down (70-75 BPM) to standing up (105-115 BPM). Agreed this could be POTS and I am being seen by an autonomic neurologist for testing. Do you think POTS/dysautonomia could cause significant skin dryness, stomach issues, and me just feeling like absolute shit? It seems so unlikely...


    @Intuition I do not know what an ENA is but my ANA was normal. CK levels were the first thing they checked and my levels were normal. In fact, all my BASIC bloodwork has been normal so far.


    @Hip Agreed with your thinking of onset of MMF. However, there is a possibility, as rare as it may seem, that I may have been going through an initial negative reaction to hepatitis b vaccine (POTS, autoinflammatory response, whatever it may be) but that i have gotten worse this past week due to the start of MMF as well... it's been 2-3 months. I wish I could contact others with MMF but I don't know anyone except @Max80 .

    There have been plenty of articles discussing ASIA (autoinflammatory syndrome induced by adjuvants) and on MMF (macrophagic myofasciitis). Do you think people with vaccines experience ASIA, separate from MMF? My thinking is that ASIA and MMF are both the same... the adjuvant causing a persisent autoimmune/inflammatory effect except that people in the U.S. refer it to ASIA because MMF has not been readily tested or known here like it is in France. Most doctors here don't even know what the hell MMF is.

    I also had that thought that maybe I contracted CFS from that patient that I had the needle stick exposure from, however, it's highly unlikely. HIV is a known trigger of CFS, although I'm not sure of the exact mechanism. I believe this patient developed CFS as a result of his HIV. It might not have even actually been CFS but a result of those horrible anti-retroviral drugs that cause excessive fatigue. I have been tested negative for HIV. Furthermore, my symptoms all chronologically match the hepatitis B vaccine. Matching that with my brother's history, it's unlikely I got CFS from this patient. It is possible that maybe I contracted a virus from the patient that triggered CFS but it's highly unlikely (the needle stick was also minimal with no blood exposure). I will look into testing for these certain vaccines... no stone unturned.


    @junkcrap50 Thank you for the response! I will eventually turn to integrative medicine when all hope runs out on these traditional doctors. The autism doctor is an interesting idea and I will definitely consider that as well as i'm sure they've had experience with adverse vaccine effects. My current clinical immunologist has been pretty darn useless.


    @caledonia Thanks for your thoughts. I have had minimal exposure to mercury in my residency... less than before. However, these may be symptoms from an aluminium toxicitiy (again through macrophagic myofasciitis).


    @HowToEscape? Sure, anything you do or take in this world might not be good for you. But most medical doctors DO NOT believe that vaccines can cause SIGNIFICANT IRREVERSIBLE DEBILITATING damage... especially for a "simple shot" that's handed out like candy purely for preventative reasons. Name another easy single dose, preventative shot or medication that can cause this much of an effect, except for anaphylactic shock? My brother and I are two primary examples of that. We both went through numerous doctors for months, all of which said "No way... it's probably anxiety.. lets get you on this or that SSRI" or "I have no idea what's going on, sorry". My latest doctor, a neurologist, hilariously said "I also had a bad reaction to a hepatitis B vaccine. You'll get better and be fine". This is while I was deathly sick and tearing up from explaining my symptoms a week ago. Most doctors are oblivious to WHAT KIND of damage that vaccines can do because they've been taught in med school that vaccines logically work but you may get these "loose term" symptoms here and there.. no big deal. None of my doctors have any idea what the hell macrophagic myofasciitis even is.. which is emerging in France as a serious, debilitating, non-treatable issue from vaccines. It was only by a freak chance that it was discovered in France too. My brother is a doctor as well as numerous close friends of mine and many are oblivious to these darker issues. It's a big problem. How is it that I had to find out about aluminium and the negative effects AFTER the fact it happened to me and turned my life to hell? I am a health professional and I was naive and oblivious about the possible horrifying aspects of vaccines. Fine, my fault. Imagine others who have literally no concept of medicine or the health field... trust me, most have literally no idea.

    After you've been through the mill with this vaccine thing, you'll realize just how oblivious doctors really are, especially GP's who hand out the vaccines.

    Howtoescape, this is not a rant against you. I'm just venting to myself at how messed up our healthcare/pharmaceutical industry is sometimes.
     
    Last edited: Mar 23, 2018
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  12. Learner1

    Learner1 Forum Support Assistant

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    I second @junkcrap50 's idea of an integrative medicine doctor, and definitely wouldn't leave it for last on your list.

    Seeing an MD who's gone through the Institute for Functional Medicine's courses (preferably a few) or a Bastyr-trained naturopathic doctor could be productive moves. Both would use an evidence-based, scientific approach to help you, and may uncover something a conventional doctor could have found if only they had the patience and curiosity to do so, as well as treatments to help you.
     
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  13. Hip

    Hip Senior Member

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    The autoimmune / autoinflammatory syndrome induced by adjuvants (ASIA) I believe is more of an umbrella term rather than a specific illness. MMF is included under the umbrella ASIA, but ASIA refers to any illness triggered by adjuvants, and includes illnesses like the Gulf war syndrome, sick building syndrome, siliconosis and ME/CFS. Ref: here.

    This paper says that the adjuvants which can precipitate ASIA are mainly aluminum hydroxide, squalene and silicone. The last two do not contain any aluminum.



    You might be interested in the following thread about a cure for ME/CFS triggered by human papillomavirus (HPV) vaccination:

    Post-HPV vaccine CFS: 25% cured by treating their nasopharyngitis with zinc chloride

    Whether than simple treatment applies to other forms of vaccine-triggered ME/CFS, I do not know.



    HIV is not one of the viruses that are associate with triggering ME/CFS. Untreated HIV which progresses to AIDS does have symptoms similar to ME/CFS, but AIDS is not ME/CFS.

    There are only a small number of viruses that are linked to ME/CFS, and the main ones normally tested for and treated by ME/CFS doctors I listed above.
     
    Last edited: Mar 23, 2018
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  14. HelloGoodbye

    HelloGoodbye

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    @Hip Yup, you are correct regarding HIV. I retract my previous statement.
     
  15. junkcrap50

    junkcrap50 Senior Member

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    Do thing concurrently! You will likely have to go through 10+ traditional medicine doctors before finding one who's helpful or even marginally helpful. You will likely (unless you hit 1:1,000+ odds) never find a traditional medicine doctor curious who will do research for your disease. You will likely have to go through 2-3 Integrative Medicine doctors before finding one who's good and just doesn't just copy mainstream integrative/alternative protocols.

    And every doctor makes you wait likely 3 months (some are booked out 2 years) for an appointment. Then 1 month for test results to come back. Then another month for your next appointment. SO much time gets wasted. So do multiple things at the same time.

    Both of my parents are doctors, who immediately believed my symptoms and illness, spent minimum 3 hours per day (on average) researching my illness, called many doctors, visted doctors across the country, attended funtional/integrative medicine conferences 2-4x per year learning about my illness, and it took 5 years before we learned I had CFS. So, please, do as many things, see as many doctors at the same time as you can.
     
    Last edited: Mar 24, 2018
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  16. Wayne

    Wayne Senior Member

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    Wow @junkcrap50, your whole post is remarkable--your family story even more so. What a blessing that your parents immediately believed you!
    Levaquin, and other fluoroquinolone medications like Cipro. Also, just recently I began a nightmare experience from a single dose of an anti-cholinergic, anti-nausea drug Promethazine--which I'm still dealing with in a major way because of brain, nerve and inner ear damage. There are lots of medications out there that are very dangerous for people like us.

    Thanks for your posts @HelloGoodbye. I appreciate anybody who takes the time to speak out, and even "vent" against the evils of vaccines, which I believe may be the number 1 health threat to the human race today. Which is saying a lot, given how many other evils are out there.​
     
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  17. Check out post #51 on this thread for a link to the VAERS (vaccine adverse effects report). There is a link for vaccines which have caused CFS.

    http://forums.phoenixrising.me/inde...r-cfs-me-help-needed.48154/page-3#post-806915

    According to Andrew Hall Cutler, if aluminum has built up in your body, it's due to having mercury toxicity, which blocks your body's ability to detoxify.

    I would think if you have MM caused by aluminum toxicity, that aluminum would show up on a hair test. If you get the Doctors Data Toxic and Essential Elements hair test, you can check for aluminum in the Toxic Elements part.

    Any mercury may not show up directly - you can detect the presence of mercury by checking for deranged mineral transport in the Essential Elements with Cutler's counting rules.

    I have links to the right test in my signature link.
     
  18. msf

    msf Senior Member

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    Sorry to hear you're going through this, it probably isn't much of a consolation that most of us on here I would guess have gone through something similar. I do not know much about vaccine triggered ME, but some of the symptoms seem quite familiar so I wonder if some of the same things people without vaccine triggers have tried might work for you too. From personal experience, getting my gut and sleep sorted were the most important steps I took, so if these are issues for you I would try to work out how to fix them. Trazodone and FODMAP were the two that made a big difference for me.
     
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  19. pattismith

    pattismith Senior Member

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    I agree that the vaccine may have triggered some auto-immune reaction. This is a serious track to explore quickly.
     
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  20. msf

    msf Senior Member

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    I see you're already taking trazodone. I've found it only works well when the gut is fixed, probably because it is suppressing astrocyte-mediated inflammation caused by LPS.
     
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