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Damaged by drugs

Discussion in 'General ME/CFS Discussion' started by digital dog, Dec 28, 2015.

  1. digital dog

    digital dog Senior Member

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    How many of us have been damaged by drugs?
    How many of us have ME type symptoms because of prescription medications?
    I sometimes wonder whether the antidepressants I took made me much, much worse.
    Are we just genetically lacking in something that cannot metabolise these drugs?
     
  2. Mary

    Mary Senior Member

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    @digital dog - There is at least one gene which can cause a problem metabolizing ADs. I have it, I found it once on my Sterling's app report, and tried to find it this morning but couldn't. Another time when I have more energy, I'll look again. FWIW, I tried Elavil once (took 2 pills) and Prozac for about 3 or 4 days, and hated them, and never took any again. I've since learned about the importance of vitamin D for mental health, and omega 3's are crucial for preventing depression. I also take 5-htp with no problem.

    I think all drugs potentially can harm us regardless of genetic status. Drugs by definition are unnatural substances often with tons of unwanted "side" (actual) effects. And doctors often don't seem to be aware of or pay attention to consequences of taking them long-term (or even short-term). Someone recently posted about problems she had from taking a PPI for over 10 years, I forget how long. That never should have happened. But people rely on their doctors and I think people have to stop doing this. I no longer rely on any doctor for any recommendation - I'll listen but then do my own research. Doctors seem to know very little about nutrition or restoring health - instead they mainly seem to hand out drugs for symptoms. I'm sure you know all this.

    My niece took an AD for 4 years. She said it made her numb, so she didn't feel bad feelings - she just didn't feel anything at all. And supposedly that's okay - it's just not.

    So I don't think the problem is genetically lacking something to metabolize certain drugs, but rather the drugs themselves. I don't think anyone ever got sick from a drug deficiency - there is no such thing. But there are loads of potential nutritional deficiencies and imbalances.
     
  3. digital dog

    digital dog Senior Member

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    Yes, I think are problems metabolising these drugs. I would imagine a lot of us with ME have this dysfunction and it is why we react so poorly to inoculations etc.

    I can't take fish oil or 5HTP. Anything like that makes me extremely ill.

    I wish I could take something (anything) but I've learnt the hard way.
     
    justy likes this.
  4. Skippa

    Skippa Anti-BS

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    Aha, I knew I'd seen this thread somewhere.

    Just reading up on POTS and found a website that states that SSRI and SNRI meds affect the central regulation of heart rate and blood pressure.

    That is all, needs more research.
     
    helen1 likes this.
  5. svetoslav80

    svetoslav80 svetoslav80 at gmail.com

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    I used to have problems with overeating and my digestive system has become hypersensitive. They prescribed me PPIs , I continued to overeat, and I think my condition worsened a lot in this period. I think it was the combination of overeating + PPIs which is very bad - lots of food and stomach is unable to digest it due to lack of acid. Of course it is partly my fault but I was in a period when I just couldn't control myself. And doctors did nothing about that (not even mentioned it), they just prescribed me PPIs and my condition become worse.

    p.s. Well as I'm thinking now, some of them had problems with overeating themselves, so maybe better not blame them.
     
    Jennifer J and justy like this.
  6. seunderwood

    seunderwood

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    Prescription drugs, anti-depressants & oral - contraceptives deplete Glutathione and other antioxidants, and also harm good Gut bacteria. Sooo, what can we do ???
     
  7. justy

    justy Donate Advocate Demonstrate

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    I agree with DD that for some of us with M.E we have strange and unusual reactions to drugs plus often rare side effects - why would that be? that's not just normal side effects that some people get. From my own experience so far I have had:

    Severe two/three year long akasthesia after two tabs of the SSRI Citalopram
    Steroid psychosis on only 5 mg of prednisolone
    suicidal ideation and severe depression - so rare not even listed as a side effect on Fexofenadine (Allegra)
    Hyperthyroid symptoms after two weeks of levothyroxine, but bloods still showed low readings (Hypothyroid)
    Psychosis on two tabs of the antibiotic Rifampicin
    Heart palpitations (but not related to QT interval after two doses of Clarithromycin
    Mast cell activation kicked off after two doses of the antibiotic Doxycycline
    Severe mast cell reaction after the probiotic VSL#3
    Agitation and low blood sugar type symptoms after:
    Co Q 10, Acteyl L Carnitine, Gingko herb, Ginseng herb, Neuroprotek, B12 injections and many other supplements
    Severe stomach pain and diarrhoea after one tablet of Curcumin
    A seizure after two inhaled puffs of a steroid.

    I wonder if this correlates with severeity of illness? I am more on the severe end of the scale now and have more reactions, and of course I also now have MCAS which makes so many things very difficult in life...
     
  8. digital dog

    digital dog Senior Member

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    This condition would be so much easier for me if I could tolerate medication. I can't. I have such acute insomnia but I cannot take any medication as my reactions are so unpredictable.

    Like Justy, I could take a seemingly innocuous substance that everyone else seems to be able to tolerate and it could render me bed-bound for six months (or longer) screaming in agony (mentally and physically).

    Why is it that people like Justy and myself take a SSRI and become incapacitated for years? What on earth is going on? It must be a form of brain damage Justy because if it was the liver, kidneys, etc they would heal faster.

    This drug/supplement vulnerability makes everything so hard as there is so little we can try. I for one cannot risk taking something for a couple of days that renders me psychotic and suicidal for two years (which is what happened to me too).

    Justy, did you take any drugs prior to being ill? Can you think of any reason that your brain may be so susceptible? I wonder whether there is a subsection of people like us who actually have a rare (ish) genetic mutation.

    My daughter can't take fish oil. She went insane. Not something I can even talk about it was so traumatic.
     
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  9. brenda

    brenda Senior Member

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    It is a long long time since l took any pharmaceuticals, like 15 years, because of my extreme reaction to them. The last time was antibiotic ear drops that made me nearly pass out and before that amitriptyline which left me with a permanently inflammed bladder.

    But even if l could l would not take them now as l have found natural remedies much better. Well apart from pain relief but l have taught myself to switch off from pain.

    For a lot of symptoms l have found food avoidance works very well. The foods which cause inflammation and which are avoided have made a big difference and the number one is gluten. I had no idea l was sensitive as l had no symptoms.
     
    seunderwood likes this.
  10. digital dog

    digital dog Senior Member

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    Natural supplements are out for me too unfortunately. Just had too many hideous reactions to things.
    I've been gluten free for five months now. No change in how I feel but I do formed poos (sorry) for first time in years so I feel it must be helping (obviously far too much to ask to FEEL any difference).

    My biggest fear is pain although pain meds actually seem to be the only type of medication I can tolerate.
     
  11. brenda

    brenda Senior Member

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    I said natural remedies not supplements as l am also sensitive to them. So for example l use garlic for infections.

    It is possible to be taking in gluten without knowing.
     
  12. Sushi

    Sushi Moderation Resource Albuquerque

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    Genova has a test called DetoxiGenomic which identifies common SNPs associated with detoxification of toxins--including medications. This test might be helpful as a guide. I'd guess that those who have had real problems with many medications could well have some of these SNPs. Here is a sample report to show what they test: https://www.gdx.net/core/sample-reports/Detoxi-Genomics-Sample-Report.pdf
     
    justy likes this.
  13. Gingergrrl

    Gingergrrl Senior Member

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    @justy Did you ever have an MCAS reaction prior to taking Doxycycline? For some reason, I thought you had but now reading this made me wonder- Do you feel that Doxy was the trigger for your MCAS? I have heard that it can be an immune modulator (besides an antibiotic) and I've never taken it but I was trying Valcyte shortly before my MCAS began which can also be an immune mod (besides an anti-viral.) I had assumed that breathing in the toxic mold triggered my MCAS, since mold is a known trigger of histamine, but in discussing this with a friend, I now wonder what role the Valcyte played?

    As far as horrible med reactions, I also have too many to count but will list a few for old times sake LOL...

    Levaquin- full body neurotoxic reaction leading to hospitalization and nearly rupturing my triceps tendon

    B12 & Folate- Extreme over-methylation reaction with agitation, confusion, tachycardia that lasted off & on for about a week

    Valcyte- Severe Akathisia even at doses as small as 1/64th of a pill

    Benadryl- respiratory depression along with agitation, confusion, muscle weakness

    and the grand finale of...

    One liter of IV saline with IV magnesium gave me flash pulmonary edema
     
    justy likes this.
  14. Gingergrrl

    Gingergrrl Senior Member

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    @Mary I think it is both in the sense that my 23andMe showed that I have very slow liver detox of the CYP2D6 pathway and metabolize certain meds at 1/4 of the speed of a normal person.

    But this is a separate issue from the fact that meds like Levaquin are neurotoxic to healthy people (I was one of them prior to taking it) not to mention that many of these meds have food dyes that can cause anaphylaxis in people with MCAS. All of my meds now are either dye free or made by a compounding pharm.

    I've also had some meds that I tolerate with no issues but cannot explain why.
     
    justy likes this.
  15. Mary

    Mary Senior Member

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    Hi @Gingergrrl - you're absoloutely right in that there are genetic factors which affect our ability to metabolize various drugs and other substances. And I totally agree about the dangers of Levaquin and other fluoroquinolones. One of my sisters suffered tendon damage from one of them. (BTW, I read about fluoroquinolones being linked to causing thiamine deficiency (http://onlinelibrary.wiley.com/doi/10.1111/chf.12037/full, and thiamine deficiency is linked to all sorts of issues, including POTS (I did a post awhile ago about this: http://forums.phoenixrising.me/index.php?threads/pots-and-thiamine-possible-remedy.31079/

    I guess the point I was trying to make was that I believe, in most cases, drugs are not a real solution, regardless of whether someone can metabolize them or not - drugs don't address or resolve underlying issues, which I believe for the most part are nutritional in basis. So whether or not someone can metabolize a certain drug, like anti-depressants, isn't the issue to me. A better solution, to me, is to address nutritional bases, such as lack of omega 3's, B vitamin deficiencies, hypophosphatemia, and so on.

    It's like with cancer treatment - they've been using extremely toxic drugs which destroy the immune system to kill cancer cells, but ensuring that it returns at the same time. It's crazy, and only recently (I think) is research turning towards helping and understanding the immune system and its ability to destroy cancer cells, instead of destroying the immune system with toxic drugs.

    But I know for now all we have for lots of conditions are drugs, with all their effects, good and bad. One of my sisters has rheumatoid arthritis. she's on 2 pretty toxic drugs right now to manage symptoms and they're starting to help.
    Unfortunately the long-term consequences of those drugs are not good, but for now it's the best modern medicine has. But the drugs are doing nothing to eradicate RA and are leading to long-term damage (including possibly cancer) and I think it's a huge mistake for modern medicine to keep the focus on developing new drugs, instead of understanding the nutritional origins of disease and dealing with those.
     
  16. Gingergrrl

    Gingergrrl Senior Member

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    @Mary Thank you for explaining and I totally understand what you are saying now. I am sorry about your sister being injured by an FQ antibiotic and hoping she is okay.

    At the time it happened to me (early 2010) there was far less knowledge about it than there is today (or actually I think the info was there but is was more hidden by Pharma.) I knew it caused both magnesium and glutathione to be depleted from the body (both of which I now supplement) but did not know about the Thiamine connection and will definitely be reading your links later today re: thiamine and FQ damage and POTS.

    I am really starting to wonder again about the role of FQ damage in my overall illness and in another thread we are discussing a genetic test to see if the FQ molecule has been adducting into a person's DNA. I have links to catch up on in there, too. But if the molecule is really added to DNA, it seems like the smoking gun to me. I am pursuing any and all treatment options in 2016 and appreciate the info.
     
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  17. TigerLilea

    TigerLilea Senior Member

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    I did not have CFS until three days after starting Penicillin. I have always wondered if there is a connection between the two.
     
    Skippa likes this.
  18. Gingergrrl

    Gingergrrl Senior Member

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    @Mary I read the links and am curious if thiamine ultimately helped your POTS and what dose you took. You said the high dose was not good for you and was curious if you tried again with a lower dose or just stopped it? Also, did it help your sister who had the FQ toxicity or did she not try it? Thanks!
     
  19. Mary

    Mary Senior Member

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    Hi @Gingergrrl - actually, I haven't had much of a problem with POTS, certainly nothing like you or others on this board. I started taking thiamine because of crashing - PEM. For me at least PEM involves a build-up of lactic acid way out of proportion to energy expended - it causes achiness and severe fatigue, and I know my crash is over when the achiness goes away. So I recently read that thiamine can help resolve lactic acidosis, which is not the same thing as PEM, but I'm sure they're related because of the issue with lactic acid. And then I read about thiamine being so important with energy production. I may have stated all this elsewhere. So recently - within the last 2 months I think - I re-started taking B1 in smaller doses than before. First I took I think 100 mg. and then cut back to about 30 - about 1/4 of a 100 mg. capsules.

    Initially it really boosted my energy a lot (unlike when I tried 400 mg. quite awhile ago) and then after a couple of days I started going downhill, extra fatigue, not feeling well. It's a long story but I'm now theorizing that it was causing hypophosphatemia (low phosphorus). I got this idea from first reading Freddd's post about refeeding syndrome. (http://forums.phoenixrising.me/inde...es-to-healing-via-induced-deficiencies.41605/) and then doing a little more research on my own about refeeding syndrome:
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2440847/:
    I was pretty sure my extra fatigue was not due to low potassium as I was already taking supplemental potassium and when I upped it, my symptoms did not abate.

    So I'm currently working on the idea that induced-low phosphorus was causing my difficulty with taking B1, and am drinking lots of kefir (which is high in phosphorus), but also today I found a source for taking phosphate as a supplement. I understand you have to be careful with supplementing with phosphate, and am seeing my CFS doctor this week and will run it all by him.

    So I know none of this ostensibly has anything to do with POTS, your initial question, and I apologize for the sidetrack, but it's what I've been dealing with.

    But in my reading about thiamine - which is so crucial for so many processes - I came across its relationship with POTS and did my post linked above, hoping it might help someone.

    Interestingly, I came across this article regarding a connection between hypophosphatemia and POTS:
    http://www.ncbi.nlm.nih.gov/pubmed/6706445

    I also came across this reference, which talks about both hypophosphatemia and thiamine (separately):
    https://books.google.com/books?id=w...INTAD#v=onepage&q=thiamine phosphorus&f=false

    It mentions cardiac issues, which sound suspiciously like some of my abnormal results from impedance cardiography testing several years ago, which I'm also going to run by my doctor.

    When my sister had FQ toxicity, it was several years ago, before I knew anything about thiamine etc. And she did not get sick like you, though she did have tendon damage and I think had a couple of surgeries. But I will be seeing her in about 6 weeks and will talk to her about thiamine then. Thanks for the reminder!

    So I'm sorry this reply is so long in answer to your questions, but nothing is simple with this DD!












    Anyways, initially
     
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  20. Gingergrrl

    Gingergrrl Senior Member

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    Thank you for your long reply and I think you also live in So CA and am very curious where you found a doc who does the impedance cardiography test? Can PM if you don't want to say publicly. I have been curious about this test since reading the article on low cardiac output (from Cheney and Peckerman) but no docs here use that machine and say it is outdated, etc, but I am still curious.

    Wow, am sorry she required tendon surgery and mine did not progress to that point but we monitored it for a good six months for fear of tendon rupture. Will be looking further into the thiamine for my own knowledge but right now do not take any B vitamins (only Vit C & D.)
     

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