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Going wrong way, Nystatin?
I've been posting more than normal as my conditions have gone backwards in recent weeks. My apologizes for so many questions, but I am really getting "out there" with all this.
Bottom line: Have been taking Bicillin shots for about 6 months. Took Nystatin with it when first started then stopped Nystatin. Kept getting shots. Now I have nausea, dizziness, fatigue and anxiety with some depression, especially when I wake in the morning.
Tried one pill of Nystatin again last night and things seemed to really bottom out quickly. Woke up severely depressed and have stayed that way all day. Having thoughts I haven't had in a while (not suicide), but negative thoughts and a felling of hopelessness.
Could that happen on that small of dose of Nystatin? Could it be die off from that one pill? I am thinking I'm loaded with antibiotics and this is a quick reaction die off, but I have no idea. If so, how do I keep taking Nystatin?
So damn tired of not knowing what to do. My LLMD is not a big help, and I have been financially devastated from all this, as many have. Is there a natural alternative to Nystatin that will not cause a severe reaction, if that is what it is?
Thsi isn't a pity party for myself, but am really not sure what is happening or even where to go to find direction now. My kids do not live with me except every other Thursday, Friday, Sat. and Sunday, so I am here alone most of the time. Have a lot of friends, but they have no way to understand this.
Can you get so far into this there is no way to get better?
Bottom line: Have been taking Bicillin shots for about 6 months. Took Nystatin with it when first started then stopped Nystatin. Kept getting shots. Now I have nausea, dizziness, fatigue and anxiety with some depression, especially when I wake in the morning.
Tried one pill of Nystatin again last night and things seemed to really bottom out quickly. Woke up severely depressed and have stayed that way all day. Having thoughts I haven't had in a while (not suicide), but negative thoughts and a felling of hopelessness.
Could that happen on that small of dose of Nystatin? Could it be die off from that one pill? I am thinking I'm loaded with antibiotics and this is a quick reaction die off, but I have no idea. If so, how do I keep taking Nystatin?
So damn tired of not knowing what to do. My LLMD is not a big help, and I have been financially devastated from all this, as many have. Is there a natural alternative to Nystatin that will not cause a severe reaction, if that is what it is?
Thsi isn't a pity party for myself, but am really not sure what is happening or even where to go to find direction now. My kids do not live with me except every other Thursday, Friday, Sat. and Sunday, so I am here alone most of the time. Have a lot of friends, but they have no way to understand this.
Can you get so far into this there is no way to get better?
Forgot to add how much your time and thoughts are appreciated. There are some very good people on this forum, and for all of you tot take time out of your day to help tells a lot about you. I try to pitch in where I can, but don't add in a lot because I don't know a lot yet.
No one really understands this, but you do on this forum. That helps so much.
No one really understands this, but you do on this forum. That helps so much.
Thanks for all the ideas, thoughts and comments, Different points of view and experiences help with direction.
Started caprylic ccid (500 mg) a day, along with one week's worth of Diflucan. I read Diflucan simply keeps the fungus from replicating but does not kill. Using the caprylic acid instead of the Nystatin, I get very tired after taking the caprylic acid, so I take it at night.
Wondering if the reason the Bicillin shots seemed to stop working may be related to the yeast. Don't know. Don't know a lot of anything but just keep trying.
Main goal is to stop the Lyme Disease because it is still causing loss of body fat. Anyone know if a yeast problem might impact stopping the Lyme? One more note - anyone get extremely tired from about 3 to 6 p.m. then feel better in the evening?
Started caprylic ccid (500 mg) a day, along with one week's worth of Diflucan. I read Diflucan simply keeps the fungus from replicating but does not kill. Using the caprylic acid instead of the Nystatin, I get very tired after taking the caprylic acid, so I take it at night.
Wondering if the reason the Bicillin shots seemed to stop working may be related to the yeast. Don't know. Don't know a lot of anything but just keep trying.
Main goal is to stop the Lyme Disease because it is still causing loss of body fat. Anyone know if a yeast problem might impact stopping the Lyme? One more note - anyone get extremely tired from about 3 to 6 p.m. then feel better in the evening?
If you felt terrible after a Nystatin pill, then I would venture to say that yes, you have a yeast problem.
Yeast Cleanse is the only supplement that has kept my yeast in check. Three or four others did nothing for me.
It's important to keep the yeast in check as it can block treatment.
Yeast Cleanse is the only supplement that has kept my yeast in check. Three or four others did nothing for me.
It's important to keep the yeast in check as it can block treatment.
I took nystatin a little while ago. One of my herxes when I start a new herb or drug are mouth and tongue sores. My LLMD think they are yeast related. After swishing and swallowing nystatin I feel better.
... and Wonko mentions above my battle with yeast/fungal infection that arrived along with Lyme.
I suspect there are some of us more susceptible to fungal infections than others ... you know, like the person in gym class who ALWAYS had athlete's foot, but the rest of us never got it? And yeast is a fungus, an opportunistic little beast that sneaks in when the body's defenses are at low ebb.
One of my parents had chronic, life-long sinus trouble that I suspect now, looking back, was a fungal infection and susceptibility to fungus. The docs didn't see it for anything important, so there were just constant quantities of over-the-counter sinus meds like Coricidin being consumed. No doc ever thought to look beyond the symptoms for the cause.
Years later, when I started treatment for Lyme, my LLMD insisted on all his patients taking a probiotic called Florastor (generic: Saccharomyces boulardii, or S. boulardii for short), because the long-term antibiotics the doc prescribed wipe out all the bad Lyme bacteria as well as the good bacteria that normally populate the digestive tract. S.boulardii is yeast-based and so not killed by antibiotics.
Acidophilus is also a commonly used anti-fungal, but is itself in the bacteria family, so it is killed by the same antibiotics that the Lyme is being treated with (Lyme being in the bacteria family). By careful spacing of when to take the acidophilus so that it doesn't collide with the antibiotics, however, it can work, but my doc figured it was a better bet to put patients on Florastor and not have to worry about timing the meds so closely.
Good theory, but it turns out some of us are susceptible to fungal infections, and I got a systemic fungal infection from the Florastor. I was bloated, my teeth were loose and aching, my eyes were bloodshot, my brain was on holiday somewhere, and I was a mess. My doc said he had never seen that happen before, so it may be rare ... or maybe just overlooked. A lot of Diflucan later, the fungal infection was gone, and I stuck with acidophilus after that, just careful to space the timing of the antibiotics and the acidophilus. Worked fine.
Long story short, as I was battling the yeast (and Lyme and babesia), I had to get the yeast thing under control, so along with Diflucan (an antifungal med which is strong and can't be used indefinitely, due to potential liver damage), I stripped out of my diet anything and everything the yeast/fungus would feed on: sugar and carbohydrates generally, as well as anything that had any fungal qualities of its own, like cheese.
I was living on 'greens and proteins' for several months at least, and nothing with sugar or grain, because it's what the yeast likes to feed on. The doc had me on Diflucan by then too, so we were battling on all fronts. It took several months, but the yeast was eradicated by meds like Diflucan [hard on the liver, so can't be taken indefinitely] and by my diet -- take away the yeast's meal card, and they starve to death. Yeah!
All that was several years ago, and I just don't crave candy or anything related to it, like cookies etc. Fruit is as sweet as things get nowadays. Fruit is something that I had taken out of my diet during the yeast battle because of its high sugar content, but I do fine with it now.
All in all, it's a much healthier diet I have now, and no regrets. I also got back to my 'fighting weight' and have no trouble staying there now. I keep to a basic diet of vegetables, fruit, protein, grains, and milk/yogurt, but stay away from cheese because it could be a problem I don't want to deal with.
The die-off when I start killing the yeast on all fronts really wasn't that bad ... not much worse than how I was feeling day to day already. The important thing is to be sure you are getting all the necessary nutrients while avoiding the yeast-related stuff.
And my mental outlook improved significantly too ... because the yeast was affecting that as well. I suspect I may have a little lingering yeast in one sinus, which seems to flare up a bit now and again, and I'm about to go after it again with something called 'NeilMed sinus rinse', which is a washing out of the sinuses to get in the nooks and crannies where the fungus likes to hide. It's the same concept as a 'neti' pot, I think. Nasal lavage. fwiw.
It's not an overnight battle, but one worth waging. You go, Murph! We're here for you. Keep us posted.
I suspect there are some of us more susceptible to fungal infections than others ... you know, like the person in gym class who ALWAYS had athlete's foot, but the rest of us never got it? And yeast is a fungus, an opportunistic little beast that sneaks in when the body's defenses are at low ebb.
One of my parents had chronic, life-long sinus trouble that I suspect now, looking back, was a fungal infection and susceptibility to fungus. The docs didn't see it for anything important, so there were just constant quantities of over-the-counter sinus meds like Coricidin being consumed. No doc ever thought to look beyond the symptoms for the cause.
Years later, when I started treatment for Lyme, my LLMD insisted on all his patients taking a probiotic called Florastor (generic: Saccharomyces boulardii, or S. boulardii for short), because the long-term antibiotics the doc prescribed wipe out all the bad Lyme bacteria as well as the good bacteria that normally populate the digestive tract. S.boulardii is yeast-based and so not killed by antibiotics.
Acidophilus is also a commonly used anti-fungal, but is itself in the bacteria family, so it is killed by the same antibiotics that the Lyme is being treated with (Lyme being in the bacteria family). By careful spacing of when to take the acidophilus so that it doesn't collide with the antibiotics, however, it can work, but my doc figured it was a better bet to put patients on Florastor and not have to worry about timing the meds so closely.
Good theory, but it turns out some of us are susceptible to fungal infections, and I got a systemic fungal infection from the Florastor. I was bloated, my teeth were loose and aching, my eyes were bloodshot, my brain was on holiday somewhere, and I was a mess. My doc said he had never seen that happen before, so it may be rare ... or maybe just overlooked. A lot of Diflucan later, the fungal infection was gone, and I stuck with acidophilus after that, just careful to space the timing of the antibiotics and the acidophilus. Worked fine.
Long story short, as I was battling the yeast (and Lyme and babesia), I had to get the yeast thing under control, so along with Diflucan (an antifungal med which is strong and can't be used indefinitely, due to potential liver damage), I stripped out of my diet anything and everything the yeast/fungus would feed on: sugar and carbohydrates generally, as well as anything that had any fungal qualities of its own, like cheese.
I was living on 'greens and proteins' for several months at least, and nothing with sugar or grain, because it's what the yeast likes to feed on. The doc had me on Diflucan by then too, so we were battling on all fronts. It took several months, but the yeast was eradicated by meds like Diflucan [hard on the liver, so can't be taken indefinitely] and by my diet -- take away the yeast's meal card, and they starve to death. Yeah!
All that was several years ago, and I just don't crave candy or anything related to it, like cookies etc. Fruit is as sweet as things get nowadays. Fruit is something that I had taken out of my diet during the yeast battle because of its high sugar content, but I do fine with it now.
All in all, it's a much healthier diet I have now, and no regrets. I also got back to my 'fighting weight' and have no trouble staying there now. I keep to a basic diet of vegetables, fruit, protein, grains, and milk/yogurt, but stay away from cheese because it could be a problem I don't want to deal with.
The die-off when I start killing the yeast on all fronts really wasn't that bad ... not much worse than how I was feeling day to day already. The important thing is to be sure you are getting all the necessary nutrients while avoiding the yeast-related stuff.
And my mental outlook improved significantly too ... because the yeast was affecting that as well. I suspect I may have a little lingering yeast in one sinus, which seems to flare up a bit now and again, and I'm about to go after it again with something called 'NeilMed sinus rinse', which is a washing out of the sinuses to get in the nooks and crannies where the fungus likes to hide. It's the same concept as a 'neti' pot, I think. Nasal lavage. fwiw.
It's not an overnight battle, but one worth waging. You go, Murph! We're here for you. Keep us posted.
"Can you get so far into this there is no way to get better?"
It certainly can feel that way sometimes, but there are many who do recover fully, including me and my family and others I have come to know over time.
Lyme affects the endocrine system, and thus the emotions, so it is part of Lyme's rude ways to not only make one feel lousy physically, but also downhearted. And truly, if one were not distressed and saddened by what Lyme can do to one's body and mind and life, then I'd think they were in denial at some level ... but mainly I think it's just another symptom of Lyme. A double whammy.
It can be a long slog for some of us, but much seems to depend on the mix of co-infections that come along with Lyme and also on an individual's body chemistry -- all things the medical profession is still working through.
Have you spoken with your doc about how you are feeling emotionally? It's something the doc should be aware of and may be able to address with medication till things square up.
Just hang on, and keep 'working the problem', as an engineer once explained to me about his profession. Keep thinking what can be done and where to get help, and just keep plowing ahead.
Many if not all of us understand how you are feeling, and please know that you are not alone. We're here.
It certainly can feel that way sometimes, but there are many who do recover fully, including me and my family and others I have come to know over time.
Lyme affects the endocrine system, and thus the emotions, so it is part of Lyme's rude ways to not only make one feel lousy physically, but also downhearted. And truly, if one were not distressed and saddened by what Lyme can do to one's body and mind and life, then I'd think they were in denial at some level ... but mainly I think it's just another symptom of Lyme. A double whammy.
It can be a long slog for some of us, but much seems to depend on the mix of co-infections that come along with Lyme and also on an individual's body chemistry -- all things the medical profession is still working through.
Have you spoken with your doc about how you are feeling emotionally? It's something the doc should be aware of and may be able to address with medication till things square up.
Just hang on, and keep 'working the problem', as an engineer once explained to me about his profession. Keep thinking what can be done and where to get help, and just keep plowing ahead.
Many if not all of us understand how you are feeling, and please know that you are not alone. We're here.
I'm sorry to hear you are going through so much.
I never had very much in the way of yeast problems. Honestly, though I was on oral abx for >3.5 years, I often went for long stretches not taking probiotics. Others I know have major yeast issues, so it must vary a lot from person to person. I was at times on nystatin,but don't recall having any strong reactions such as you report. (However, in general I was overly sensitive to many medications/stimuli while I was sick, so I can relate to how you feel.)
I don't know if JackieCalifornia is still posting much at this time, but I know she went through a lot with yeast issues and found dietary changes to be very effective. The site allows you to message users directly, too. So if the yeast meds are hard for you, yeast unfriendly diets may be worth investigating, either through folks here or beyond.
It is also unfortunate that you have little faith in your LLMD. Though I had my doubts and criticisms along the way, I overall was satisfied with my treatment plan. This illness is so complicated and variable, if you don't trust your doc that is a definite set-back. I assume you can't easily switch, but even if it is not easy you may at least want to get contact information for other options for LLMDs.
I know platitudes don't heal Lyme disease, but I personally think your determination will be an asset in getting well. I consider myself to be on the "other side" of the illness, but I have not forgotten the many times I felt that I was just getting worse and/or making no progress. But I stuck with treating and I stuck with living my life as if I would get better. It takes resilience to not give up, so give yourself some credit for that.
Even when I first stopped abx, I didn't really feel that great and in fact a different LLMD (I had moved) recommended more treatment. Instead I addressed other medical issues and let some time pass for my body to renormalize after the years of abx. I guess what I'm saying is, from my experience, it was unrealistic to expect to suddenly wake up and be "cured," it was more of a process than flipping a light switch!
Sorry I don't have much in the way of a technical response, but wishing you well and good luck moving forward.
I never had very much in the way of yeast problems. Honestly, though I was on oral abx for >3.5 years, I often went for long stretches not taking probiotics. Others I know have major yeast issues, so it must vary a lot from person to person. I was at times on nystatin,but don't recall having any strong reactions such as you report. (However, in general I was overly sensitive to many medications/stimuli while I was sick, so I can relate to how you feel.)
I don't know if JackieCalifornia is still posting much at this time, but I know she went through a lot with yeast issues and found dietary changes to be very effective. The site allows you to message users directly, too. So if the yeast meds are hard for you, yeast unfriendly diets may be worth investigating, either through folks here or beyond.
It is also unfortunate that you have little faith in your LLMD. Though I had my doubts and criticisms along the way, I overall was satisfied with my treatment plan. This illness is so complicated and variable, if you don't trust your doc that is a definite set-back. I assume you can't easily switch, but even if it is not easy you may at least want to get contact information for other options for LLMDs.
I know platitudes don't heal Lyme disease, but I personally think your determination will be an asset in getting well. I consider myself to be on the "other side" of the illness, but I have not forgotten the many times I felt that I was just getting worse and/or making no progress. But I stuck with treating and I stuck with living my life as if I would get better. It takes resilience to not give up, so give yourself some credit for that.
Even when I first stopped abx, I didn't really feel that great and in fact a different LLMD (I had moved) recommended more treatment. Instead I addressed other medical issues and let some time pass for my body to renormalize after the years of abx. I guess what I'm saying is, from my experience, it was unrealistic to expect to suddenly wake up and be "cured," it was more of a process than flipping a light switch!
Sorry I don't have much in the way of a technical response, but wishing you well and good luck moving forward.
"Can you get so far into this there is no way to get better?"
I doubt that but the disease does have a way of waxing and waning. "Better" is the goal---- not back to pre Lyme.
The reasons for Lyme to hang around are myriad and very technical---- I think I've posted all those or directed people to sites and articles that should be read as often as possible----- until they make sense. To post those over again would take me months and months---- because it took me years and years to be able to assimilate them.
I doubt that but the disease does have a way of waxing and waning. "Better" is the goal---- not back to pre Lyme.
The reasons for Lyme to hang around are myriad and very technical---- I think I've posted all those or directed people to sites and articles that should be read as often as possible----- until they make sense. To post those over again would take me months and months---- because it took me years and years to be able to assimilate them.
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