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Medication prior to onset of ME

Discussion in 'Other Health News and Research' started by slysaint, Jan 4, 2016.

  1. slysaint

    slysaint Senior Member

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    I am not well versed in all the scientific stuff so apologies if this sounds naive.
    Has anyone done a survey to find what medication people were on before the onset of ME/CFS symptoms?
    I've seen/participated in many surveys about symptoms and treatments but not come across any that deal with what happened before (apart from what people might have been suffering from at the time eg flu).

    My reason for asking is not to identify any specific medication as the culprit but rather try and help identify the process eg hpa-axis suppression, mitochondrial disruption, central nervous system damage etc
     
  2. xrayspex

    xrayspex Senior Member

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    not sure but had a major surgery in 1989 and figure anesthesia played a role in downfall after that
     
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  3. Jennifer J

    Jennifer J Senior Member

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    Hi, @slysaint. I'm very interested in what you wrote. I think it may have played a big role in what happened to me.

    Long story, can't go into all right now. I overdosed on Atarax 150 mg 4 times a day for 9 months. I was put on it for a constant angioedema reaction that other meds weren't relieving. (I'm a small person who has never tolerated much medicine or alcohol.) It was horrible all the side effects. You read the list of side effects and overdosing - I had them.

    Doctors blew it off as stress, except for the research doctor I worked for and my friends who knew me. Came to S. California and saw a doctor who was a friend of the family. I had bones sticking out of my chest and was shaking like I had Parkinsons, and numerous other side effects. He said they were trying to kill me on that dose. He found some other meds that worked for me.

    That was 14 years ago. I haven't been the same since (understatement). I have the usual questions regarding what caused my ME/CFS. I do think the medication played a big role in me having ME/CFS, or may have even been the cause of it being this bad. I don't know. There's a lot of other that comes into play, too.
     
    Last edited: Jan 4, 2016
  4. helen1

    helen1 Senior Member

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    Several members of PR have thought fluoroquinolone antibiotics may have triggered their illness.
     
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  5. valentinelynx

    valentinelynx Senior Member

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    Wasn't on any medications.
     
  6. Gingergrrl

    Gingergrrl Senior Member

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    Was this for MCAS or was the angiodema something separate? That is an insanely high dose of Atarax and when I take it as a rescue med it is 25 mg once per day. Am so sorry that happened to you! ETA- I don't in any way mean it was your fault, just a very high dose your doc had you on.

    I am in So. CA too and have a great MCAS doc but am not sure if he is taking new patients right now (or if you even need the info.) If you do, feel free to send me a PM.

    And in general, ground zero of my illness was Levaquin/FQ antibiotic but then multiple other triggers to follow.
     
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  7. Gingergrrl

    Gingergrrl Senior Member

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    This was my second trigger and had a minor surgery with anesthesia but never recovered properly and five days later was diagnosed with severe mono/EBV. The surgeon said there was no possible way that I got mono from the surgery but I tend to disagree. The surgery was approx 2 yrs after the Levaquin injury.
     
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  8. PDXhausted

    PDXhausted Senior Member

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    I feel oral contraceptives have played a big role in whatever is wrong with me.. Whether they are a cause or just an aggravating factor, I'm not sure.

    I was on them about a year at age 22, then stopped them. Afterward, I started developing my first episodes of post-exertional intolerance and soon after my first ruptured endometrioma.

    I went back on them continuously (no placebo weeks) for 8 years in order to suppress endometriosis and prevent further cysts. My ME/CFS symptoms gradually developed and got worse during that time.

    I saw a big improvement after I quit the pill, but later developed severe endometriosis (in the form of giant endometrial cysts on my ovaries) and have become severe and bedridden since.

    I'm in the process of dealing with the cysts and hope it helps.

    In the meantime I do wonder if I really have ME/CFS or just some kind of freakish damage from the pill but who knows. I have also had significant responses to antibiotics and activated charcoal, as well as a mild response to equilibrant. So, I'm not sure. Hoping research will eventually help either confirm or rule out ME/CFS. In the meantime just trying everything and continuing to search!

    Edited: forgot to mention, I took a course of cipro around the same time I first went on birth control right before my first symptoms appeared. I didn't have a bad reaction that I could tell.

    I was prescribed cipro again, a few years later (after my first PEM episode but before I really had full-blown CFS symptoms), and had a severe anxiety attack and felt ill after just one pill. I didn't take anymore after that, but I do wonder about that as well.
     
    Last edited: Jan 5, 2016
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  9. Countrygirl

    Countrygirl I'm with Cheesus

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    http://www.investinme.org/InfoCentre-vaccines-popup-3.htm

    Back in the '90s. I remember communicating with the people involved in the above document which strongly link the antibiotic Septrin/Bactrim to ME. I had taken it for 7 years as I have double bronchiectasis and it was during this time that I developed severe ME. I discovered that many others also developed the illness after taking this drug. A support group was started, Doris Jones who write many articles on the illness for her academic studies for higher degrees contacted me as did the two women who started the group. The findings were sent to parliament and the use of Septrin was seriously curtailed in the UK as the evidence was so strong. I understand it changed its name and was let loose on the US market as it was mostly banned here.

    I think, if I recall correctly, that a number received compensation for developing ME after taking the antibiotic.

    It is Doris Jones' work that regularly features in the papers held in the so-called UK's Secret Files.

    Whenever I read on PR that some here in the US are taking bactrim, it makes my toes curl. I guess the folk in the US aren't aware of Bactrim's murky past and it association with the onset of ME.
     
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  10. PDXhausted

    PDXhausted Senior Member

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    @Countrygirl That is interesting about Bactrim-- I was on a prophylactic dose of Bactrim for UTIs during the time I gradually developed symptoms as well. I had already begun to have symptoms prior to taking the bactrim, so probably not a causative factor for me, but definitely one to add to the list of things to wonder about. You're right that it is a commonly used treatment in the US, especially for UTIs.

    Actually, frequent UTIs is why I was given Cipro too. When I was a baby, I had a UTI so bad it ascended into my kidneys and I had to be hospitalized. Not sure which antibiotics they gave me then (early '80s). I've always been really prone to infection and have had to use antibiotics throughout my life.
     
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  11. Gingergrrl

    Gingergrrl Senior Member

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    I have never taken Bactrim but wonder how it compares in neurotoxicity to the FQ antibiotics?
     
  12. slysaint

    slysaint Senior Member

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    I'm not thinking of it as a means to identify triggers, but rather a potentially useful additional bit of information for researchers. It could show patterns that might not have been considered or help eliminate certain factors. Even if a percentage of people didn't take any medication, I would have thought that it would be logical to investigate what you do know before guessing what you don't.
    Until someone gathers the data its all speculation.
     
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  13. xrayspex

    xrayspex Senior Member

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    hey PDX--I think the pill wasn't a good thing for me either, but it didn't directly alone trigger me going over the line to permanent broken-ness but looking back it may have been another piece in compromising my system, I had done it in my early 20s too and then affter my major surgery for gb at age 29 I developed cysts like you, I thought maybe scar tissue played in there but they tried me on the pill again for that but I couldn't tolerate the pill at all anymore it had me crawling the walls, hormones do not work for me since then, although I did vitex for pms for like 5 years in my 40s,I am not sure if that was good or not to do as I went into early menopause was done with it all age 45

    I am really curious how is charcoal a risky thing? I take that to mop up stuff in my gut sometimes, but didn't think it could be chemically risky other than effecting nutrient absoprtion?
     
  14. xrayspex

    xrayspex Senior Member

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    Jennifer, I am small and always been sensitive to chemicals, now more than ever of course but I tried atarax a few years ago I thought it might help with sleep, my doc got me liquid form so that I could control dose to be minute but even with tiny amount (like a couple mgs) it caused severe hypotension or something where I felt like breathlessness and faintness, loss of oxygen feeling so I stopped it right away
    I was trying to find alternative to benadryl that I used to use for sleep that I think made me lose IQ points permanently and foul moods the next day but that is another story
     
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  15. xrayspex

    xrayspex Senior Member

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    I was going to post a question somewhere at the forum , this seems like good spot to ask too---if anyone has ever had a physician take serious action regarding an inability to process medications---I want to know if there are tests or ways to deal with it when someone has chemical sensitivity---I have had integrative docs that do boutique stuff and will give you the genova company etc tests to look at detox issues but that I pay for out of my pocket and it doesn't help me in the mainstream system

    can "mainstream" docs that are in the "accepted" systems, run any tests that would identify cause or solution to an inability to easily or safely process medication? because it is huge problem for me; I would just leave meds alone but I keep trying from time to time to find some I can tolerate because have recurring kickass chronic pain that natural methods don't always touch
    But they sure don't seem to have much of a systematic response what to do about that other than say too bad or try other things on you

    I am wondering if mainstream has capability to do like genetic or cytochrome testing or like yasko-like etc and if there are ways to help sensitive people tolerate things, like perhaps they could give meds IV or injection and bypass certain systems....they gave me recently some pain meds in a cream that they said would bypass gut that way and prevent reflux but I still got the side effects even in smaller dose that way, the pharmacist was bit freaked out and said it must have crossed my blood brain barrier as I was putting it on myneck, whereas they thought it would just act locally

    but I suppose insurance companies don't want to pay for getting that complicated
    but in meantime it seems so archaic and dangerous...I do not understand how they can justify so rudimentary in this day and age
     
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  16. PennyIA

    PennyIA Senior Member

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    I had been on oral contraceptives until I developed a Pulmonary Embolism; was put on blood thinners and Folic Acid, B6 and B12 (cyano-).

    Within 3 months was mostly recovered from the PE.

    Within 4 months started to struggle with fatigue, chronic unexplained pain, etc.

    Took a few years to identify that I had B6 toxicity (which probably started when I started to get ill). And much longer to figure out I didn't tolerate Folic Acid and that my high B12 was probably un-usable for my system before I discovered Methylation and MTHFR defects.
     
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  17. slysaint

    slysaint Senior Member

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  18. PDXhausted

    PDXhausted Senior Member

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    I apologize, I wasn't clear in my post-- I've had significant positive response to both antibiotics (not the cipro but others) and activated charcoal, as well as mild positive response to equilibrant.
     
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  19. Gingergrrl

    Gingergrrl Senior Member

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    I had an allergic reaction to two different brands of charcoal at a literal toothpick dose but I suspect this is only b/c I have MCAS and prior to this, I probably could have tolerated the charcoal. My husband and daughter take it with no problems.

    How strange b/c I have insane med reactions to micro doses of things and Atarax is one of the best meds I have ever tried. I take 25 mg as a rescue med for MCAS (only a few times per month at present) and it helps me to breathe better and is one of the best meds I have ever tried (and I cannot tolerate Benadryl.) Am only posting b/c I wonder why and what this means.

    I have never had a mainstream physician take the slightest interest in this issue. The first doc who ever looked at my SNP's from Genetic Genie and explained why I cannot process certain meds was my mold doctor.
     
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  20. xrayspex

    xrayspex Senior Member

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