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Suggest Treatment For Parasitic Meningitis
Question: Hi,
I am a 34 year old female that in July of 2015 was diagnosed with parasitic meningitis/ encephalitis. I almost died and have never been that sick and never want to be again! I took meds for 4 months and seemed to recover as fully as possible, have some vision problems as a after effect of the infection. The medication was stopped per my Neuroligist's orders. Unfortunately the infection relapsed, he started me on the medicine again. The infection seemed to be controlled and we stopped the medicine again, and yet again the infection returned. Started it again and it seemed to start to control it again. He then decided to put me on preventive medicine for the rest of my life. Because he said the cysts of the parasite would never be eradicated but need to be controlled. The meds I currently take our 400mg fluconazole, 160/800 sulfamethoxazole/tmP twice daily, and 1000mg of clarithromycin daily. I know this is needed for my survival as what I have can kill me if it is not treated, but my question is do people successfully take that many kinds of medicine for long term? Also is it safe? I will continue to take them because it's far better than the other outcome. Please express your thoughts on this.
Thanks XXXXXXX
I am a 34 year old female that in July of 2015 was diagnosed with parasitic meningitis/ encephalitis. I almost died and have never been that sick and never want to be again! I took meds for 4 months and seemed to recover as fully as possible, have some vision problems as a after effect of the infection. The medication was stopped per my Neuroligist's orders. Unfortunately the infection relapsed, he started me on the medicine again. The infection seemed to be controlled and we stopped the medicine again, and yet again the infection returned. Started it again and it seemed to start to control it again. He then decided to put me on preventive medicine for the rest of my life. Because he said the cysts of the parasite would never be eradicated but need to be controlled. The meds I currently take our 400mg fluconazole, 160/800 sulfamethoxazole/tmP twice daily, and 1000mg of clarithromycin daily. I know this is needed for my survival as what I have can kill me if it is not treated, but my question is do people successfully take that many kinds of medicine for long term? Also is it safe? I will continue to take them because it's far better than the other outcome. Please express your thoughts on this.
Thanks XXXXXXX
Brief Answer:
There are safety issues.
Detailed Answer:
I read your question carefully and I understand your concern.
Your situation is a really rare one, it is not common practice to continue antibiotics for ever, but on the other hand given the repeated recurrences it is understandable why that choice was made, it is not a situation for which there are established guidelines. Because of the rarity of the situation one can't make generalizations, decisions are made based on that individual patient. It is an extreme decision made only because neuroinfection consequences can be even more serious.
As for the therapy being safe, any medication can potentially cause side effects in a percentage of patients, even the seemingly safe over the counter ones, let alone antibiotics. So those medications do carry a potential for side effects, particularly on the liver, heart, allergic reactions, infections, interactions with other drugs etc. The good thing is that since you have tried them in the past it seems your body is coping pretty well, being a young individual, with I assume no other conditions you should for the close future be able to do well.
If one speaks of lifelong treatment though what applies today may not do so in many years time. As you age there is the chance you might develop other issues such as liver conditions, cardiac arrhythmias etc or need other interacting medications, which may make you more vulnerable to this therapy than at the current moment. So I am afraid one can't say them to be safe.
I would consider in time say in a year to at least try to reduce the dosages. As I said there are no general guidelines for this type of situation, I am not necessarily saying my suggestion is necessarily the right one, may lead to a recurrence of the infection. But I would try a reduction at some time in the future.
I remain at your disposal for other questions.
There are safety issues.
Detailed Answer:
I read your question carefully and I understand your concern.
Your situation is a really rare one, it is not common practice to continue antibiotics for ever, but on the other hand given the repeated recurrences it is understandable why that choice was made, it is not a situation for which there are established guidelines. Because of the rarity of the situation one can't make generalizations, decisions are made based on that individual patient. It is an extreme decision made only because neuroinfection consequences can be even more serious.
As for the therapy being safe, any medication can potentially cause side effects in a percentage of patients, even the seemingly safe over the counter ones, let alone antibiotics. So those medications do carry a potential for side effects, particularly on the liver, heart, allergic reactions, infections, interactions with other drugs etc. The good thing is that since you have tried them in the past it seems your body is coping pretty well, being a young individual, with I assume no other conditions you should for the close future be able to do well.
If one speaks of lifelong treatment though what applies today may not do so in many years time. As you age there is the chance you might develop other issues such as liver conditions, cardiac arrhythmias etc or need other interacting medications, which may make you more vulnerable to this therapy than at the current moment. So I am afraid one can't say them to be safe.
I would consider in time say in a year to at least try to reduce the dosages. As I said there are no general guidelines for this type of situation, I am not necessarily saying my suggestion is necessarily the right one, may lead to a recurrence of the infection. But I would try a reduction at some time in the future.
I remain at your disposal for other questions.
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
Thank You for your answer. My next question is, could my infection become resistant to the medication? The infection is an acanthamoeba amoeba infection. I am so thankful for the doctors and that they figured it out and saved my life, but just trying to do everything I can to keep it at bay. I was told my liver and kidneys may be affected over time with these drugs. I have blood work every three months. Is there any thing I can do to help my body out, (liver, kidney) will my immune system be ruined because of the antibiotics? Should I take a probiotic? Also have you ever know of people who were on life long antibiotics for other health problems or am I just the freak case? This all became because of water that was forced up my nose during a summer vacation. Thanks again for your help. I have a family and I am just trying to do all I can to help my body.
Brief Answer:
Read below
Detailed Answer:
There is a chance that the infection may become resistant to medication. That is the reason that a combination of drugs is given instead of only the one. This way even if a mutation leading to resistance to one drug occurs the other drugs will eliminate these resistant cells. So with such a combination therapy the risk is low. Therapy with antibiotics will not ruin immune system though, it doesn't affect it.
As for helping the liver and kidney all you can do is conduct a healthy lifestyle, pay attention to a healthy diet, avoid alcohol in particular. I would recommend taking a probiotic supplement.
You are somewhat of a freak case, amoeba infections are rare, when they happen it usually is in the setting of immune system suppression from conditions like HIV, so if not your case rarer. Most patients do not survive at all. So you are kind of special for how you've done with this condition. I have not had other cases with life long antibiotic treatment, neither have I heard that from other colleagues, the longest therapy duration in my professional experience has been for 2 years.
Let me know if I can further assist you.
Read below
Detailed Answer:
There is a chance that the infection may become resistant to medication. That is the reason that a combination of drugs is given instead of only the one. This way even if a mutation leading to resistance to one drug occurs the other drugs will eliminate these resistant cells. So with such a combination therapy the risk is low. Therapy with antibiotics will not ruin immune system though, it doesn't affect it.
As for helping the liver and kidney all you can do is conduct a healthy lifestyle, pay attention to a healthy diet, avoid alcohol in particular. I would recommend taking a probiotic supplement.
You are somewhat of a freak case, amoeba infections are rare, when they happen it usually is in the setting of immune system suppression from conditions like HIV, so if not your case rarer. Most patients do not survive at all. So you are kind of special for how you've done with this condition. I have not had other cases with life long antibiotic treatment, neither have I heard that from other colleagues, the longest therapy duration in my professional experience has been for 2 years.
Let me know if I can further assist you.
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
Thank you for your knowledge. I have never had any other health problems prior to this brain infection, other than taking a daily dose of medicine for low thyroid levels. Also hiv negative. My last question for you is, do you think I can go on living a normal long life other than some minor side effects from the meds, obviously if I don't have issues from my liver, kidneys, and heart. I have heard since my experience that some fungal meningitis survivors are treated with life long fluconazole. Sorry for all the crazy questions:).
Brief Answer:
Yes you can.
Detailed Answer:
Hello again!
Yes of course you can go on living a normal long life. If you have no issues with the organs you mentioned there is no reason why you can't conduct a normal lifestyle. When we speak of side effects and of higher risks of issues happening doesn't necessarily mean that they will happen. So as long as you are feeling well and the tests come back normal no reason not to go on living a normal life.
Wishing you good health.
Yes you can.
Detailed Answer:
Hello again!
Yes of course you can go on living a normal long life. If you have no issues with the organs you mentioned there is no reason why you can't conduct a normal lifestyle. When we speak of side effects and of higher risks of issues happening doesn't necessarily mean that they will happen. So as long as you are feeling well and the tests come back normal no reason not to go on living a normal life.
Wishing you good health.
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
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