Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
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Antibiotics: complete the round or stop?

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Sinclair, Sep 10, 2014.

  1. Sinclair

    Sinclair Senior Member

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    Five days ago I started a 10 days round of an AB composed of sulphametoxazole 80% and trimetoprim 20% prescribed my GP on a plan based on anti-parasites, antibiotics, and then antiyeast and then antiparasites again
    The AB is described here: http://www.mayoclinic.org/drugs-sup...imethoprim-oral-route/description/drg-2007189

    I am feeling bad today (day 5) and some of the CFS symptoms I though I had under control seem to come back. I felt not well the first day with AB either.

    What is the most likely explanation for my symptoms at day 5?: i) a die-off or ii) the AB weakening my Th1 system even more and thus leaving viruses without control?

    You find such a bad things about ABs that I don't know what to do...what would you suggest?
    To complete the 10 days round or to stop right now?

    Many thanks for the feedback!
     
  2. snowathlete

    snowathlete Not an ol' sleazebag

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    If it's just ten days then I'd probably keep going, so long as you don't think you're allergic to that antibiotic.
     
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  3. zzz

    zzz Senior Member

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    @Sinclair, the drug you are taking is most often known by the brand names Bactrim or Septra. In certain situations, it can have serious side effects, including death. As an ME/CFS patient, I would not take this drug. You can find more information at Septra, Bactrim Linked to 'Serious' Side Effects and Bactrim-Septra: a secret epidemic. Note: the second article was written by Brian Deer, who also wrote the articles leading to the withdrawal of Andrew Wakefield's paper associating the MMR vaccine and autism from the Lancet.
    I wouldn't recommend this course of action, as you may discover the side effects too late.
     
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  4. xchocoholic

    xchocoholic Senior Member

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    I'd contact your doctor. He/she knows your lab results and medical history.

    Tc ... x
     
  5. Sinclair

    Sinclair Senior Member

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    Thanks for your replies....@zzz the information you sent me is really really frightening!! Actually, the brandname I am using is co-trimoxazole.

    My GP wrote me yesterday and she believed it was a die-off and to try to detox...

    Today I feel even worst, more weakness....

    After reading this information, what Dr. Chia thinks about ABs, and my own reactions (I intuitively suspect a Th1 harm rather than a die-off) I am inclined to stop the intake here.

    I completed 5 days of 2 daily doses of the blend of trimetoprim 160 mg & sulfametoxazole 800 mg.

    Any suggestions for a safe withdrawal? Anything I can do to eliminate these harming substancies from my body?

    Actually, I remember trying this same AB while a child...maybe an ME contributing factor?

    I got sad and really concerned about this...I was doing quite better before starting this AB....

    Many thanks for your support!

    Sinclair
     
  6. Helen

    Helen Senior Member

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    Another explanation to your symptoms could be that the drug is metabolized by an enzyme in Phase I detox system where you might have polymorphism-s. I have problems with many drugs, but got explanations to why from a Detoxigenomics gene test from Genovation.
     
  7. zzz

    zzz Senior Member

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    I doubt it. I lived in India and Nepal a number of years, and I had to take Bactrim many times, as avoiding intestinal infections and parasites there (especially in Nepal) is almost impossible. Like the vast majority of people, I never had any problems with Bactrim. I would start feeling better within a day, every time.

    I also had to take it once while I had an active case of ME/CFS. Again, no problem.

    If you weren't having any problems, I would not be concerned. But instead of getting better, you're getting worse. This appears to be an adverse drug reaction to me.

    People often mistake reactions to Bactrim as being die-off reactions. But Bactrim does not produce this type of reaction. If you Google "Bactrim Herxheimer", you will get many relevant results, such as No, this is NOT a Bactrim/Septra herxI.

    It's not just the articles I mentioned that describe the dangers of Bactrim (which is just another name for what you're taking), The following is from the manufacturer's own prescribing information, as published by the FDA:
    So do you really want to take this drug?
    If I were in your position, I would stop the drug immediately, contact your GP and let her know you stopped it, and work out a better treatment plan. Tindamax (tinidazole) is a good anti-parasitic drug that also functions well as a wide-spectrum antibiotic, and it has relatively few side effects.

    Doctors get in the habit of prescribing certain drugs, and many of them never read the entire prescribing information. How much does your GP know about CFS? How much does she know about the interaction of Bactrim with CFS? Simply attributing your reactions to a die-off without further research or investigation does not sound to me like the medical care that you need.
    I would agree with your conclusion. However, as you can see from the prescribing information, there are many other things that can be going wrong either instead of or in addition to Th1 harm.
    Yes; just stop it immediately.
    I don't know anything in specific; in general, time will take care of them.
    If anything, it would be the other way around. In other words, the infection you took it for (especially if it were giardia) would be much more likely to be a latent cause of ME.
    I don't think there's much to worry about if you stop it now. Your symptoms don't sound too severe, so they're most likely all reversible.
     
    Last edited: Sep 11, 2014
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  8. Sinclair

    Sinclair Senior Member

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  9. Helen

    Helen Senior Member

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    This information in the post from @zzz might be particularly interesting thinking of ME/CFS.

    Folate deficiency
    Bactrim should be given with caution to patients with impaired renal or hepatic function, to those with possible folate deficiency (e.g., the elderly, chronic alcoholics, patients receiving anticonvulsant therapy, patients with malabsorption syndrome, and patients in malnutrition states) and to those with severe allergies or bronchial asthma.

    Hematological changes indicative of folic acid deficiency may occur in elderly patients or in patients with preexisting folic acid deficiency or kidney failure. These effects are reversible by folinic acid therapy.

    @Sinclair. As most people with ME/CFS have one or more mutations that cause folate deficiences if not supplemented this might be of interest for you.
     
  10. snowathlete

    snowathlete Not an ol' sleazebag

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    It's worth keeping in mind though that warnings like this appear on all drugs. All drugs have risks, including fatality. Some more serious risks and more likely, than others. But I couldn't see any statistics in the list above to help make proper informed choice, just unhelpful terms like "rare" and "most common". I don't know if more specific data is available.
    I think it's unwise to just be scarred off by a list of potential negative consequences without balancing their probability in your mind along with potential benefits of taking said drug, something your doctor should have done (and idealy did do) before deciding to prescribe the med for you.
    People take drugs, including antibiotics, when the potential benefits of taking them are deemed to outweigh the risks. As @xchocoholic says above, you should discuss this with your doctor, and with their expert medical opnion, and armed with knowledge of how you are reacting to the drug, they can give you their opinion, which you can take or reject.
     
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  11. zzz

    zzz Senior Member

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    This is simply not true. As someone who is extremely sensitive to drugs, I have been reading prescribing information for all the drugs I take for over twenty years. Although virtually all of them have some side effects, the vast majority of drugs do not have fatal reactions when used as prescribed, and have far fewer possibly serious reactions than Bactrim.

    For example, take Tindamax, a powerful antibiotic that I suggested as an alternative to Bactrim. Like all powerful antibiotics, Tindamax has quite a few side effects. But they don't begin to compare to those of Bactrim. Here are the corresponding parts of the Tindamax prescribing information:
    Compare that with the equivalent info for Bactrim. Tindamax is considered a very safe drug.
    These terms are commonly used in prescribing information for drugs. Although they're not defined in the Bactrim prescribing information, I found their definition in the prescribing information for another drug:

    Looking through the prescribing information of a number of drugs, either this scheme or a similar one is used, with the same frequency accorded to the various terms.

    It is also important to remember that these statistics were gathered from an otherwise healthy population. People with ME/CFS tend to have many more drug reactions than most people; that's part of the neurological nature of the illness. For example, there are certain side effects that I always experience, and unless they're in the "very rare" category (in which case I usually experience them anyway), I can be guaranteed of experiencing them, even though their general frequency is less that 0.1%. Fortunately for me, this applies only to a certain class of side effects.
    I don't disagree. But one must keep in mind that the probability listed for various side effects is for healthy people, not people with ME/CFS. And the word "ideally" is key here; in practice, my experience is that doctors routinely prescribe certain drugs that they are comfortable with, and only the ME/CFS specialists consider their possible interactions with ME/CFS.
    I think it's a big mistake to assume that all doctors have an expert medical opinion. Some do; some don't. And almost none understand the intricacies of ME/CFS to know how a drug will work in a PWME.

    Remember that in otherwise healthy people, Bactrim caused quite a few deaths (which is in accordance with the prescribing information). Presumably, the people who died from taking this medication were prescribed it by their doctors, who thought it was a good, safe choice, and who would have maintained that position if patients questioned their choice, as that is what doctors tend to do.

    If we can really rely on doctors' "expert medical opinion", should we believe what the typical doctor says about ME/CFS? And remember, many doctors are quite convinced that they understand ME/CFS very well, even if they don't have a clue as to what it really is.

    Just ask Simon Wessely.
     
    Last edited: Sep 12, 2014
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  12. Gingergrrl

    Gingergrrl Senior Member

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    I cannot comment on whether or not to stop the antibiotic and have never taken Bactrim. But I agree wholeheartedly with @zzz that most doctors get their info on meds from their pharma reps and have no knowledge of how PWME are affected by meds.

    I am not exaggerating when I say that Levaquin almost killed me in 2010 and my doctor never warned me of the potential side effects (and I did not have ME at that time.) I would be very careful and read all the info to make the most informed decision that you can.
     
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  13. snowathlete

    snowathlete Not an ol' sleazebag

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    @zzz the bit where I said all drugs have risks, including fatality, was just a bit of poor wording by me. What I meant was all drugs have risks, fatality being one of them ( for some drugs).

    I don't agree that the probabilities listed for side effects are in regarding otherwise healthy people. Surely these are sick people, hence requiring a drug treatment and they may well have concurrent illnesses. Your argument that people with ME are more ill and sensitive to drugs and therefore more likely to experience side effects, may have some merit. But it's not a fact that's been proven as far as I'm aware. Who's to say the portion of people reported to experience those serious side effects weren't more sick than us, not less? There are worse diseases out there and people who are more sick. I think there are a lack of facts regarding this so reliable conclusions either way are harder to reach.

    Regarding doctors and their opinion, they have had training so their opinion is by definition expert. It doesn't mean it's right. But it is expert. They could be Wesley or they could be Klimas. (Just picking two different names to make the point) but I don't know and can't judge.

    Someone's come on here asking advice and personally though I have experience as a patient, i don't have an expert opinion and don't even have the full details, with the person sat in front if me. So unless they report something grossly worrying I can't see it would be appropriate to undermine their doctor. We can't just assume all doctors are morons because some are.
     
    Last edited: Sep 13, 2014
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  14. zzz

    zzz Senior Member

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    Yes, this is true.
    This is the way drug trials are done. People with comorbid conditions are specifically excluded from these trials so as not to confound the results. This is done specifically so that it is known that any adverse reactions come from the drug being tested, and not from other drugs or other conditions. Exceptions are made when the comorbid condition is common with the condition being treated; the results for these people are listed separately. Reactions that happen only when taking other drugs are also listed separately.

    I'll give you one example. My doctor had a poster up in his office advertising for people to sign up for a trial of a new asthma drug. Since I was having troubles with my asthma at the time, I asked my doctor about signing up. "They'd never let you in," he said. Why? Because of my ME/CFS and its various manifestations. I didn't think that they had anything to do with my asthma, but you never know. On reflection, I realized that the Th1 to Th2 shift might have some influence here. People running drug trials want results that are not contaminated by other conditions, so they don't admit people having such conditions to their drug trials, whether or not there's an obvious connection between the comorbid condition and the condition being treated by the drug. If they did let such people in, the FDA wouldn't consider the trials valid, and the drug could never get approved.
    If they did, they would be excluded from the drug trials, and their results would not show up. Or, if their concurrent illnesses were relevant to what was being treated, or very common, they would be listed as a separate group. By doing things this way, the most accurate and relevant results are provided to doctors and others who read the prescribing information.
    I am also unaware of any formal studies concerning this mechanism. This doesn't mean that it doesn't exist. I repeatedly and routinely see reports from PWME who describe their unusual drug sensitivity. This appears to be an integral part of dysautonomia. I can't say that all PWME have it, but it's certainly a large enough proportion that it needs to be considered.
    They wouldn't have been admitted to the studies if they were. If people like that were admitted to drug studies, the side effects reported for the drug would be badly skewed, often having nothing to do with the drug, and would not be representative of the general population. This would make the side effects report worthless.
    Yes, there are. These people were not included in the Bactrim drug trials. If they were, they would have been listed separately.
    Technically, you are correct. But if their "expert" opinion is wrong, what good is it? In fact, it can be downright dangerous, as @Gingergrrl's experience with Levaquin attests. And then there are all the ME/CFS "experts" who recommend graded exercise therapy, which can be quite dangerous.

    In complex cases, it may be difficult to judge whether a doctor's approach is correct or not. If we have doubts, the wise thing to do is to get a second opinion from an expert doctor whom we believe to be reliable. But there are many simple cases where it's easy to check. For example, if a doctor recommends GET for you, are you going to follow his advice?

    I always check the prescribing information for any new drug that a doctor gives to me. I tell the doctor ahead of time what my specific drug sensitivities are, but you would be surprised how much of the time I get prescribed drugs that aggravate those very sensitivities. Few doctors have read the prescribing information for all the drugs in the PDR, and even for those drugs that they prescribe frequently, I have not seen any who have all the adverse reactions memorized. They often have the most common reactions memorized, but that's it. How many doctors either have all the adverse drug reactions memorized, or else check them before prescribing the drug to a new patient? I haven't encountered any, which is why I learned to read the prescribing information before taking any new drug. This has saved me from a lot of adverse drug reactions.
    Based on my all too extensive experience with Bactrim, the description in the prescribing information, the reports of severe and sometimes fatal reactions to this drug (which are also reported in the prescribing information), @Sinclair's description of getting worse on the drug instead of better, and his doctor's dismissal of this situation without doing further investigation, I did find the situation grossly worrying. @Sinclair shouldn't have been having the reaction he was, and his doctor wasn't following up on it. Considering the possible side effects of Bactrim, this seemed to be potentially a very dangerous situation, and so I spoke up.

    I certainly don't assume that "all doctors are morons"; the vast majority of my doctors have ranged from "good" to "outstanding". But there are bad doctors out there; we all know that. There are also doctors who are usually quite competent, but who are unprepared for unusual situations. If you want to find one of these, just go to your average doctor and say that you want to be treated for CFS. I have seen no evidence that @Sinclair's doctor is a "moron", but it seems that she's missed something important here. Doctors are human; they make mistakes. Honest doctors admit that. (See this excellent TED video for a fascinating explanation of what this is like from the doctor's side.) This seemed to be a mistake with potentially serious consequences, so I spoke up.
     
    Last edited: Sep 14, 2014
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  15. snowathlete

    snowathlete Not an ol' sleazebag

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    I think you're confusing two different things here. How drug trials are conducted and where the information on adverse drug reactions comes from.

    You are correct that concurrent illnesses often exclude people from taking part in trials. I myself have ME and ulcerative colitis so I am normally excluded from taking part in trials for either, meaning I can't try Rituximab in a ME trial or a UC trial even though the drug is being trialled in both diseases.

    But the adverse drug reactions information comes not only from drug trials where such events may well occur and be reported (and may relate to patients who are more sick than us even without concurrent illness, which was a key point I tried to make above) but also from the drugs subsequent use in the real world, where concurrent disease are often present.

    This from the FDA (similar bodies exist in other countries/areas):
    FAERS is a useful tool for FDA for activities such as looking for new safety concerns that might be related to a marketed product, evaluating a manufacturer's compliance to reporting regulations and responding to outside requests for information. The reports in FAERS are evaluated by clinical reviewers in the Center for Drug Evaluation and Research (CDER) and the Center for Biologics Evaluation and Research (CBER) to monitor the safety of products after they are approved by FDA. If a potential safety concern is identified in FAERS, further evaluation is performed. Further evaluation might include conducting studies using other large databases, such as those available in the Sentinel System. Based on an evaluation of the potential safety concern, FDA may take regulatory action(s) to improve product safety and protect the public health, such as updating a product’s labeling information, restricting the use of the drug, communicating new safety information to the public, or, in rare cases, removing a product from the market.
    http://www.fda.gov/Drugs/GuidanceComplianceRegulatoryInformation/Surveillance/AdverseDrugEffects/

    My bolding.
    I don't know what proportion comes from trial reporting and which from the drug once released to the public but I'd bet that both types are well represented once the drug has been in use a while.
     
    Last edited: Sep 14, 2014
  16. zzz

    zzz Senior Member

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    I am well aware of this. Since these two sources of information come from different places, they are presented separately in the prescribing information. The information from the drug trials is always presented first. The information from drug usage in the general population once the drug has been approved and released is always presented in a section labeled "Postmarketing Experience" or something similar. I did not include this section with Bactrim as these adverse reactions are less certain to be connected with the drug; everything I included in my post was from the drug trials. Here is the entire Bactrim section of Postmarketing Experience:
    As you can see, all the worst reactions were discovered in the drug trials themselves, not after the drug was released.
     
    Last edited: Sep 14, 2014
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  17. snowathlete

    snowathlete Not an ol' sleazebag

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    Fair enough, I concede that point. But still, the trialist's themselves may have been more sick than us, more sick than whoever it is being prescribed the drug now. Worse still, you could be more severely ill than them and at increased risk of adverse reactions. Unless you have access to and go read the trial studies, you may not have enough information to quantify the risk as it relates to you, in which case you can only take the specified data from the patient information sheet and weigh both the seriousness of the potential reactions with the stated chance of them occurring and then decide whether the potential benefits outweigh the risks.
    This is where you need to know details about the persons disease state, which disease(s), how severe, how well has this drug been shown to work on the disease, etc.? Because this is important information in order to understand the potential benefits side if the equation. Most people need a doctor to help with this.
     
  18. Sinclair

    Sinclair Senior Member

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    Many thanks for your feedback and for raising such interesting points.

    Just want to report that after a week of stopping co-trimoxazole I still feel the bad consequences of it, in a lower degree though.

    My yellowish eyes have tended to vanish, but I have not been able to get back my previous AB ME level

    Hope this will improve in the following days. I have read the effects of ABs remain in the body for a couple of weeks at the least, after stopping intake.

    If a parallel may be built with another kind of insult to the immune system (chemotherapy), my mother experienced severe bad effects between the third day and the fourteenth day after the 4th chemotherapy round with a different drug.

    Of course I have read opinions that AB effects remain for good in the body since they permanently affect the gut ecosystem. Thus, unless you do something to fix this aggravated imbalance, significant improvements are unlikely.

    Kind Regards,
    Sinclair
     
  19. zzz

    zzz Senior Member

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    You hadn't mentioned that your eyes had turned yellowish. That's jaundice. From the prescribing information above, under "Warnings" and the subcategory "Hypersensitivity and Other Fatal Reactions":
    Under "Adverse Reactions", the following is listed under "Gastrointestinal":
    Cholestatic jaundice is jaundice that results from abnormal bile flow in the liver. Hepatic necrosis is death of the liver tissue. You didn't mention many specific symptoms of your getting worse, but you did say this:
    Symptoms of hepatic necrosis include nausea, weakness, fatigue and abdominal pain; somnolence and mental clouding. Fortunately, rapid recovery is typical after stopping the drug that caused hepatic necrosis.

    It's impossible to say for sure whether or not you had hepatic necrosis without further information, but the presence of jaundice is highly indicative. The hepatitis mentioned in the prescribing information simply means inflammation of the liver, and does not imply a viral infection. It, too, typically clears up rapidly once the drug causing it has been stopped.

    If you had not stopped the drug, your condition may have progressed to fulminant hepatic necrosis, which is a very severe form of this condition. From the "Adverse Reactions" portion of the prescribing information:
    So you are quite fortunate that you stopped this drug when you did.

    Your GP made a major mistake by telling you your symptoms were probably a die-off and not investigating further, which would have led her to tell you to stop the drug. You probably didn't tell her about the jaundice, which is a big red flag, but she's supposed to ask about your symptoms if you have a drug reaction. If you had followed her advice and continued the whole course of the drug, you might not be alive today. At the very least, you would be in much worse condition.
    It depends completely on the specific antibiotic. Bactrim clears the system rather rapidly - within a few days. If you're still feeling worse after this, as you indicated, you should probably have tests done to see if you are suffering from any of the extended reactions that Bactrim can cause. The combinations of your infections and Bactrim's (probably temporary) effect on the liver would also be enough to give you a relapse; it's impossible to say how long that would last.
    Again, it depends on the antibiotic. Most antibiotics, including Bactrim, do have a negative effect on the gut ecosystem which is not self-correcting. Taking good probiotics can help keep your gut functioning well.

    @Sinclair, you did exactly the right thing by stopping this drug when you did; you definitely minimized the damage that the drug could do. You also illustrated why it's very risky to rely on a doctor's instructions alone when you have a drug reaction, especially when you have ME/CFS. I always look at the prescribing information for a drug before I take the first dose of any drug; I have many drug sensitivities, and this course of action has saved me from many adverse drug reactions. It's also good to look at the "Adverse Reactions" section of the prescribing information if you have any new symptoms after taking the drug. Again, this has helped me minimize unexpected problems from a number of drugs I have taken. The easiest way to get the current prescribing information for a drug is just to Google "<drug name> prescribing information". Sometimes adverse reactions to a drug occur even if they're not listed in the prescribing information; if you Google the drug name and the adverse reaction, you can usually figure out if there's a likely connection.
     
    Last edited: Sep 19, 2014
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