The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
Discuss the article on the Forums.

What increased your sensitivity to meds?

Discussion in 'Hypersensitivity and Intolerance' started by joejack102, Dec 12, 2016.

  1. joejack102

    joejack102 Senior Member

    Messages:
    110
    Likes:
    59
    For those that are really sensitive to meds, drugs, herbs, medications, etc.... What do you think could have caused this? Were you taking anything at the time? Any supplement or drug? etc.
     
    Invisible Woman and Jennifer J like this.
  2. caledonia

    caledonia

    Messages:
    4,351
    Likes:
    3,451
    Cincinnati, OH, USA
    In some cases it could be genetic. You may be an especially fast or slow detoxifier in the various CYP 450 detoxification pathways where drugs are metabolized.

    If you have a general sensitivity to meds, supps, cleaning products, paints, perfumes and other chemicals, etc. you may have mercury toxicity, and specifically mercury + arsenic exposure.
     
  3. TigerLilea

    TigerLilea Senior Member

    Messages:
    1,136
    Likes:
    3,419
    Vancouver, British Columbia
    I've been sensitive to meds since I was a young kid. My dad also had the same problem. So I'm guessing it is something genetic. I don't believe that there was any one thing that caused it.
     
    Invisible Woman and Jennifer J like this.
  4. Mary

    Mary Senior Member

    Messages:
    3,113
    Likes:
    7,152
    Southern California
    @joejack102 - 13 years ago my liver was overloaded with toxins, and this made me quite sensitive to meds, OTC and otherwise, and alcohol. I did a liver detox under the supervision of my chiropractor who does muscle testing, and that extreme sensitivity went away.

    However, I'm still sensitive to meds, though not as sensitive. But I also think that medicines are foreign substances - they're not things we should tolerate easily, IMO.
     
    Jennifer J likes this.
  5. Dechi

    Dechi Senior Member

    Messages:
    1,054
    Likes:
    1,956
    I have no idea, I wish I knew. I have sensitivity to meds, supplements, chemical scents, body creams or products. Also frequent urination when I eat too much protein and when I take certain supplements, such as multivitamins and many others.

    I started doing helpful testing with someone who knows what he's doing not too long ago, so hopefully one day we'll get to this and find out.
     
    Invisible Woman and Jennifer J like this.
  6. taniaaust1

    taniaaust1 Senior Member

    Messages:
    11,990
    Likes:
    12,985
    Sth Australia
    I have many mutations with the CYP 450 detoxification pathways (see my genes below) where drugs are metabolized. I wasn't though originally sensitive to medications or foods before ME but I guess the faults with the detox genes would of made me more susceptible to developing issues with these.

    I had ME for about 10 years before I developed MCS. In my case I'm sure it was cause I got a part time job as a cleaner so I was then being exposed to lots of chemicals.. so I think that finally crashed my detox system. I often think I wouldn't have MCS now if I hadn't taken on that part time cleaning job while I had ME.

    My food intollerances developed around the same time as I developed MCS so I believe there is a possible connection there too with things.

    So I want to say to all who have ME.. take care, do not exposure yourself to more chemicals then you have to in case this also happens to you. MCS is a horrible issue to have and causes a lot of issues.
     
    Invisible Woman and Jennifer J like this.
  7. justy

    justy Donate Advocate Demonstrate

    Messages:
    5,361
    Likes:
    12,321
    U.K
    what causes my sensitivity to meds, smells, chemicals etc is MCAS - mast cell activation syndrome. My MCAS was bought on by Lyme disease, which is proven to be able to do this.

    Drugs for MCAS are helping with reactions - but not helping with drug reactions. My drug reactions include: atypical anaphylaxis, itching, seizures, rare side effects, inability to tolerate normal doses, paradoxical reactions.
     
    Invisible Woman and Jennifer J like this.
  8. Dechi

    Dechi Senior Member

    Messages:
    1,054
    Likes:
    1,956
    @justy So you have MCAS, Lyme and ME ?
     
  9. justy

    justy Donate Advocate Demonstrate

    Messages:
    5,361
    Likes:
    12,321
    U.K
    yes, and EDS III This cluster of illnesses/co morbidities is not unusual. I have met a lot of people with all of them.
     
    Dechi likes this.
  10. Dechi

    Dechi Senior Member

    Messages:
    1,054
    Likes:
    1,956
    @justy Did you get a SPECt scan to diagnose ME and were there cerebral cortex anomalies ? This is a lot of illnesses at once, I am sorry about that.
     
  11. justy

    justy Donate Advocate Demonstrate

    Messages:
    5,361
    Likes:
    12,321
    U.K
    This
    No - hardly anyone in the world gets a Spect scan. Have you had one?
    I have a dx of M.E from two top M.E Drs, one of whom helped write the ICC definition. I also took part in a research study on definitions by Leonard Jason and was told I fit every definition going for M.E including the CCC and the ICC
     
    Dechi likes this.
  12. btdt

    btdt Senior Member

    Messages:
    113
    Likes:
    61
    Ontario
    I think I started out clean did not have many drugs or illnesses my entire life my first drug reaction was a TIA from birth control pills when I was 18. I was not ill before then so I think I may have a genetic issue with drugs this was the first drug I had which I needed to take an extended period of time previously a couple antibiotics and a steroid cream for a rash is all I recall.
    I have a long list of drugs reactions since... so long the idea of posting them exhausts my brain to the point of pulling the plug on the computer for the day. I may come back another time and talk about it if it becomes important.
    It seems to me I got cfs after a serious reaction to prozac given to me to treat leg nerve pain after a car accident. I had been on antibiotics after the accident for a long time to treat a sinus infection and prevent surgical infections .. the sinus infection was endless. I went quite crazy on prozac very short term use less than a month maybe less than two wks I can't recall now but it was short.

    In 2004 I had an ovary removed ... some woman say mcs has something to do with hormones so I am stating this. My house flooded I know mold comes onto the list of things to investigate. After 2004 I was ill with one infection after the other. At one point I took avelox with effexor and was later told by a different pharmacist... I can't take both but I already had. I developed high cholesterol was put on a statin I know all the trouble they cause... I know now not then. I also developed gerd and was given ppi drugs....

    Fast forward 2006 still having infections was given levaquin... was quite stupid doing a lot of things that were not in my best interest mostly I could not get up... later that years head drops and foot dragging started. A neurologist for those symptoms took my off effexor tried to switch me to cymbalta ... it did not work.. he tried mirapex lyrica I could not tolerate any... I tried to go back on effexor my body rejected full dose I did not know then to try a small dose.

    Cold turkey from not only antidepressants but gerd meds cholesterol meds 2007...there were more meds by then I can't recall them all... I quit everything I felt poisoned could not eat could not get up I could not get a doctor and I could not find any real help just treating presenting symptoms and it was not working.

    2007 I noticed dishwasher soap made me ill I kept switching brands .. nail polish made me ill... I could no longer dye my hair ... grew to hate perfume. I was still sick so it was easy to avoid using these things I was in bed.

    Oddly enough I was having reactions to shampoo and soap in the shower after a shower I would have to go to bed sometimes just for the day other times for a wk the whites of my eyes would turn red extreme fatigue and cognitive issues... I reported all this to doctors who checked my heart... it was ok.

    I threw away all scented products a couple years ago... still could not escape other scents other people used... did not know about mcs until after that... just got dx two months ago.

    I have had extreme reactions to drugs... TIA seizure like episodes with dental drugs... lidocaine marcaine... I avoid the dentist now. The lidocaine reaction lasted for months I could not walk straight or see properly .. an eye test the wk of the reaction showed problems .. I still have but my body has adapted some to this. (ask I will tell you otherwise this will be pages long.

    In 2012 I had a car accident broke a rib got a concussion and was treated with levaquin for resulting pneumonia... I took it 3-4 days getting increaingly worse with every pill I took... I kept thinking it was a concussion maybe it was the drug gastro issues were ridiculous. I needed to treat the pneumonia end stop... so did with a different drug.

    The last couple of years I have had anaphylaxis reactions to antibiotics and started with food reactions. Blistering of lips and mouth and other reactions... tomato when tested at an allergist I do not react to tomato prick test... it is all very confusing to me.

    low Igg... that I know...
    waiting on 23 and me maybe that will help

    I have presented with this shaking and jerking since Aug... had a seizure like event around the same time... not sure if there was an initiator if there was it has not been identified. My doctor says it looks like huntingtons but it isn't... my brain looks good... so I am told yet here I am. EEG showed movement disorder of my one leg... that is all I know.

    I think the sensitivities snow ball... the more you have the more you get and I do not know what to do about them ... apparently neither does my doctor.
    So if you know what to do about them pm me please.
     
    Invisible Woman, xrayspex and justy like this.
  13. Dechi

    Dechi Senior Member

    Messages:
    1,054
    Likes:
    1,956
    @justy Yes, I had one a few weeks ago. The results were sent in Chile for analysis, so I am waiting for them. I hope the meds I was on will not influence the results. I stopped nimotop 3-4 days before the test, hopefully it's enough and it works.
     
  14. justy

    justy Donate Advocate Demonstrate

    Messages:
    5,361
    Likes:
    12,321
    U.K
    You say you have been diagnosed with MCAS/ have youi had Mastocytosis ruled out with correct testing? Tryptase and Bone marrow biopsy? MCAS can be treated, but it can take a long time and lots of trial and error to find the correct drugs etc. Are you on a low Histamine diet? if not then that would be my first port of call, followed by vitamin C and quercetin - these are things you can do yourself. What country are you in? perhaps you don't have a Dr that can treat MCAS?

    I also suggest reading Dr Afrin's book 'Never Bet Against Occam' It is the most thorough book written on MCAS so far and not a difficult read -a real eye opener.
     
    btdt likes this.
  15. btdt

    btdt Senior Member

    Messages:
    113
    Likes:
    61
    Ontario
    MCAS? What does the extra A stand for? Could it be I don't know the name of the disorder I have been dx with? Anything is possible.
    ps in the middle thanks to edit...
    I looked... Mast Cell Activation Disease nobody has suggested this is my problem. So I have had no testing for it. Is Tryptase an easier test than a bone marrow biopsy? I see a blood test is this what you mean that I could likely get.

    "MCAS/ have youi had Mastocytosis ruled out with correct testing? Tryptase and Bone marrow biopsy? MCAS can be treated"

    No testing for those things that I recall... and how is it treated... are you talking about multiple chemical sensitivity? or something else? I live in Ontario Canada.
    So far I do not have a doctor that treats mcs I am on a two year waiting list... what am I to expect from quercetin I tried it and did not notice a thing... vit c I take and many other things.

    Tryptase sounds like trypsin... as in alpha 1 antitrypsin deficiency which came up on my 23 and me I just made a post about it and mcs... today here at this site.

    I now need to know how they are related... if they are as I have no clue what either really are.
    if this link is any good I am too dim to catch it today putting it here for a later look
    http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0138748
     
    Last edited: Apr 1, 2017
  16. btdt

    btdt Senior Member

    Messages:
    113
    Likes:
    61
    Ontario

    It has taken a bit of time and a nap to get back to this sorry Justy I was confused in the message above. I was diagnosed with MCS Multiple Chemical Sensitivity not MCAS I easily get lost in acronyms as my memory is so bad lately.

    I have had a tooth infection that got out of control and had dental surgery 4 rounds of antibiotics and what I think was a seizure due to ultra caine.. dentist thinks it was just my movement disorder. It has been a rough couple of months hoping my memory issues are related to the events above hoping to bounce back with enough recovery time.
    It takes me a long time to recover from these reactions... and my thinking will likely be impaired hit and miss for a time... how long is unknown.

    All in a way to explain the post above...

    I did read some about MCAS on this site and do have a problem with the BH4 gene if I recall correctly.

    I took a look at MCAS here too
    http://ohtwist.com/what-is-mcad/
    found I had that coma after eating for a long time but it seems to have eased now... the study mentioned brings up the trypsin or something like it again...

    bit to read if you like from that site... I don't know what I have would not doubt it is this

    "
    Dr. Milner’s study did find a subset of patients who exhibited an elevated baseline tryptase in a familial inheritance pattern, who all also exhibited signs of hypermobility characteristic of Hypermobile type Ehlers-Danlos and many of the comorbidities. That said, not all patients with hEDS have an elevated baseline tryptase, and I’m not sure if all patients with an elevated trpytase are also hypermobile – he only studied those who are. You can learn more about this subset here:

    By the way, Dr. Milner’s term for this comorbidity he calls “Familial Tryptasemia”, is not a new disease technically. And, you can’t get diagnosed with it – yet. (Commercial testing is not yet available for this, nor is there a billing code.) It’s just a study result so far, but a solid one. Many other patients will still have what we affectionately call “The Trifecta” of EDS, MCAD and POTS or other dysautonomia forms still, even in the absence of “Familial Tryptasemia”. Again, it just explains one small subset. We still need to explain the majority, and more.

    Patients with MCAD are those people who may have some (or even lots of) “traditional” common IgE-mediated pollen, food and drug allergies, though not always! Many are totally negative for any “traditional” IgE-mediated allergies you can test for.

    But we often also have additional food and drug and environmental sensitivities and intolerances (IgG and IgA mediated reactions that don’t tend to require epi-pen use) AND…

    …many reactions of any severity (including any grade of anaphylaxis) to foods and drugs and also non-proteins like scents, dyes, chemicals, sunlight and stress not explained by either IgE or IgG as well. This even includes electromagnetic radiation for some.

    Some get mis-diagnosed with “multiple chemical sensitivity”, porphyria or idiopathic anaphylaxis among other things besides the common throw-away mental health diagnoses of depression, anxiety and hypochondria. Those in a hurry to find the best articles for your doctors, please see my MCAD Resources, else read on to learn more about MCAD and when to suspect it.

    From the gene mutation link above ...this is the gene and possible treatment maybe to come.

    "
    Armed with this clue, the researchers then went back through thousands of patient records for healthy people. When they looked at the DNA results of people with high tryptase levels, they found that all of them also had the TPSAB1 mutation. The scientists then interviewed a number of these supposedly hearty specimens and found that all of them were living with symptoms that sounded suspiciously similar to those of EDS-HT, POTS, and MCAS. They'd just never been diagnosed. (This is unsurprising—the average time to diagnosis for a person with EDS-HT is 10 years.)

    In short, Milner and his team had discovered a genetic biomarker for Ehlers-Danlos Syndrome. Now, EDS-HT is a very variable condition, and the few experts that do exist suspect it's actually a bunch of different diseases called by the same name. Still, this finding represents one possible clinical test for what has been an un-testable illness.

    Alpha-tryptase is a funny thing. About 30 percent of people don't make it at all, and they seem just fine without it, which means that a potential treatment pathway for the EDS-HT/MCAS/POTS hat trick could involve simply shutting down the alpha-tryptase factory."
    http://mentalfloss.com/article/87506/one-gene-mutation-links-three-mysterious-debilitating-diseases

    OK that is it for me for now.
     
  17. justy

    justy Donate Advocate Demonstrate

    Messages:
    5,361
    Likes:
    12,321
    U.K
    Sorry, not able to read all of your post above due to brain fog.

    I firmly believe that MCS is actually MCAS which is now being fully recognised as a disease. You cannot just take a blood test for it - it needs a specialist who knows what they are doing to dx, either with complex testing that is sensitive to the way it is handled and must be done correctly or testing plus symptoms. I suggest you read Dr Afrins book - he is the world expert on the disorder.

    If you have this, find a good Dr and get treatment you may be able to feel a lot better than you do now.
     
    Plum likes this.
  18. btdt

    btdt Senior Member

    Messages:
    113
    Likes:
    61
    Ontario
    This is information about the gene if anyone is up to the reading and understanding of it... I can read it but nothing goes in.
    https://www.wikigenes.org/e/gene/e/7177.html

    Thanks for the help Justy I have added the book to my list of books to get when I am up to reading a book.
     

See more popular forum discussions.

Share This Page