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Question about burning sensation
Hello again, I am now 7 months into treatment with my LLMD and am doing okay. I would venture to say that I am in the 85% good range most days. I stopped all antibiotics 3 months ago and have been taking herbals twice a day since then that target the Lyme. I also take other supplements for general health but all herbal no prescription anything. So I am much better off than I was 7 months ago. However for the last month or so I have these burning sensations that will appear for about 5 seconds and then go away. They occure about 10 times a day. It is mostly on my legs but sometimes on my arms and torso.It is usally about the size of my hand and intense enough to notice when it happens. I still have tingling in my feet and legs all the time as well as headaces that got real intense a couple of months ago but seem to be letting up now. Does anybody have any thoughts about this burning senstaion and why it is developing now?
Thanks and Merry Christmas
Thanks and Merry Christmas
No I am not taking those or any supplement specifically for liver support. I do take Green Vibrance super food daily and it has some stuff for liver support in it.
My doc feels the herbals are not as hard on my organs as the chemical versions. She does believe they are a part of the plan but not the whole plan.
I am not in either camp right now, I am following her advice and at some point will decide if I think she was right or do I need to seek other advice. Jackie seems to have gotten the desired result after a year of antibiotics and that is great. Others here have gone much longer on treatment. So I don't know where the right place to declare victory or defeat is. But I do appreciate you all trying to help me figure that out.
My doc feels the herbals are not as hard on my organs as the chemical versions. She does believe they are a part of the plan but not the whole plan.
I am not in either camp right now, I am following her advice and at some point will decide if I think she was right or do I need to seek other advice. Jackie seems to have gotten the desired result after a year of antibiotics and that is great. Others here have gone much longer on treatment. So I don't know where the right place to declare victory or defeat is. But I do appreciate you all trying to help me figure that out.
Samento and banderol are the antimicrobials, burbur and pinella to help detox, lumbrokinase is the biofilm dissolver. Probiotic to help your gut. Stevia apparently targets the cyst form of the spirochete. Sounds like a good plan! Do you take any supplements to help support your liver while it's working so hard to clear the toxins? (Milk thistle, PC, glutathione?)
Thanks as always for the help understanding this crazy infection. Being a man I just wish it was something like a broken bone that we heal and move on not some thing that evolves and hangs on for years.
To answer Jackie, I took Flagyl in the beginning along with Doxycycline, then I took Biaxin for awhile. I was supposed to take Ceftin but found out I was allergic to it so that didn't happen. My LLMD,s plan all along has been to hit it with antibiotics and then move to herbals. She told me that if I had displayed a regression when we started the herbals we would have went on with more antibiotics. She has a lot of faith in the herbals I am taking, samento, Burbur, Banderol, Pinella, Lumbrokinase along with a pro biotic. It looks like I need to stop taking the pro biotic at the same time I take all the other stuff though.
I went to her last week and she is happy with where I am at in treatment, she added Stevia and I started on it this week. Since starting the Stevia I have felt not well, the old symptoms of flu like, stomach area discomfort and nausea have really kicked up. I did a search on this site and saw where others had flare ups when starting Stevia. Any thoughts on that would be appreciated.
Bottom line is that I do have faith in the LLMD I am seeing, and she has faith in the Herbals. The problem is I am like most people and don't want to have to take this stuff forever. In the big picture 7 months is not that long and if I am on the right path then it is all worth it.
Again thanks for being out there to help us through the medical wilderness.
To answer Jackie, I took Flagyl in the beginning along with Doxycycline, then I took Biaxin for awhile. I was supposed to take Ceftin but found out I was allergic to it so that didn't happen. My LLMD,s plan all along has been to hit it with antibiotics and then move to herbals. She told me that if I had displayed a regression when we started the herbals we would have went on with more antibiotics. She has a lot of faith in the herbals I am taking, samento, Burbur, Banderol, Pinella, Lumbrokinase along with a pro biotic. It looks like I need to stop taking the pro biotic at the same time I take all the other stuff though.
I went to her last week and she is happy with where I am at in treatment, she added Stevia and I started on it this week. Since starting the Stevia I have felt not well, the old symptoms of flu like, stomach area discomfort and nausea have really kicked up. I did a search on this site and saw where others had flare ups when starting Stevia. Any thoughts on that would be appreciated.
Bottom line is that I do have faith in the LLMD I am seeing, and she has faith in the Herbals. The problem is I am like most people and don't want to have to take this stuff forever. In the big picture 7 months is not that long and if I am on the right path then it is all worth it.
Again thanks for being out there to help us through the medical wilderness.
1 Comments
Since the antibiotics are working, what is your doc's reasoning to stop taking them?
I'm sorry I don't have the space or time to copy in here the reference books I have recently read on herbal antibiotics and antivirals, so I will simply say that individual pharmaceutical antibiotics have narrowing bands of effectiveness. It does take 3 abx to hit all 3 forms of Bb, because the mechanism a specific antibiotic uses will only work against 1 form of a bacteria: for example, the ones that kill by breaking down the cell wall are ineffective when the form does not have a cell wall, or when the bacteria has 2 cell walls and the ability to pump foreign substances out from between them. Bb switches forms, so once it's established 1 abx will not get rid of it. I researched different types of antibiotics and how they work, using azithromycin, cefdinir, and tinidazole as my starting points, since they were what I was taking. And I would recommend Buhner's book on natural antibiotics if you would like to learn more about how both pharmaceuticals and herbals work.
Yes, I also took and continue to take high-level probiotics, They do not replace the complex ecosystem of bacteria in our gut, but they do well enough to keep most people reasonably healthy and avoiding overt intestinal issues. There's an active debate going on about when to take probiotics (other than away from the antibiotics by at least 2 hours, which is not in question). It seems strange but apparently researchers are still debating about whether the probiotics should be taken on an empty stomach, or with, or after food.
Fear of pharmaceuticals has no bearing on my treatment or the choices made for my treatment; neither my llMD nor I are afraid of them, so the whole fear aspect is irrelevant, at least in my case. We are after the most effective way to get rid of the Bb and keep me as healthy as possible. It's also worth bearing in mind that pharmaceuticals and bacteria both evolve significantly in even 5 years!
I wish I had no issues with insurance, but the grand schism in Lyme treatment does affect insurance coverage. Add to that the fact that the insurance companies now decide how much of any particular antibiotic you should have in a given time period, and that's all they will consider for coverage. That leaves a lot to pay for out of pocket. Yes it's absolutely worth it, but I can get the same result from a different path that costs less. Besides which, I'm following what my dr recommends, and so far that's 4 months abx changing to 2 months of herbals. I have my next appt tomorrow and I'll see if we stick with the herbals or switch back. We go 2 months at a time.
Yes, I also took and continue to take high-level probiotics, They do not replace the complex ecosystem of bacteria in our gut, but they do well enough to keep most people reasonably healthy and avoiding overt intestinal issues. There's an active debate going on about when to take probiotics (other than away from the antibiotics by at least 2 hours, which is not in question). It seems strange but apparently researchers are still debating about whether the probiotics should be taken on an empty stomach, or with, or after food.
Fear of pharmaceuticals has no bearing on my treatment or the choices made for my treatment; neither my llMD nor I are afraid of them, so the whole fear aspect is irrelevant, at least in my case. We are after the most effective way to get rid of the Bb and keep me as healthy as possible. It's also worth bearing in mind that pharmaceuticals and bacteria both evolve significantly in even 5 years!
I wish I had no issues with insurance, but the grand schism in Lyme treatment does affect insurance coverage. Add to that the fact that the insurance companies now decide how much of any particular antibiotic you should have in a given time period, and that's all they will consider for coverage. That leaves a lot to pay for out of pocket. Yes it's absolutely worth it, but I can get the same result from a different path that costs less. Besides which, I'm following what my dr recommends, and so far that's 4 months abx changing to 2 months of herbals. I have my next appt tomorrow and I'll see if we stick with the herbals or switch back. We go 2 months at a time.
I take a different view -- antibiotics and herbs are both chemicals, but they are not necessarily equally effective in treating Lyme disease or other bacterial infections.
In recent years, the use of herbs instead of antibiotics has surged, because of fears about over-use of antibiotics ... but not because the antibiotics are ineffective or harmful in and of themselves.
As with any substance taken into the body, there are some people who will react badly to some antibiotics, but that individual reaction is not evidence that all antibiotics are useless or harmful.
If I were to get Lyme again, I would not hesitate to take antibiotics as prescribed by my very experienced and knowledgeable MD. If I were someone who is allergic to antibiotics, I would explore the possibilities of herbs, but my first choice would be antibiotics because they work.
I do not understand the bias against antibiotics: they are chemicals just as food and herbs are chemicals. What matters is how effective the medications are, and when dealing with serious and debilitating diseases such as Lyme, I go for the best and most effective treatments.
To my reading and in my own experience and that of others in my family, antibiotics used to kill the Lyme and other bacterial infections are the treatment of choice. If someone cannot tolerate antibiotics, that is a different situation, but fear of antibiotics should not, in my view, be the deciding vote.
These terms are not just differences in wording: 'antibiotics' is used in the medical world to mean specific groups of medication which do not include herbs. Blurring the used of the term 'antibiotics' to include herbs simply creates confusion. This is not simply a wording (or 'semantic') issue: it is a difference in meaning.
Pharmaceuticals are not necessarily 'harsher' than antibiotics: both terms apply to medications, which have a broad definition. Tylenol is a pharmaceutical, for example, and is generally tolerated by most people.
It is important to be precise about the nature of treatments and to understand the uses, advantages, and risks of each treatment. Shifting terminology does not help the situation.
You say, "Pharmaceuticals are harsher and each drug has a very specific focus, so for example it takes at least 3 different ones plus anti-biofilms to deal with the spirochetes." Do you have documentation from medical literature on that point?
You also say, "The herbal antibiotics contain multiple compounds that work together to kill the bad bacteria, and because they are not a single form of attack like our antibiotic drugs, the bacteria do not have resistance to them." -- Mmmm, not necessarily so: If the herbs don't have the right chemicals to kill particular bacteria, then it won't work on those bacteria. It's why even in tribal societies (such as in the African bush and the jungles of South America) use specific herbs to treat ailing members. Whether medications come from a pharmacy or a jungle, they must be able to attack and kill specific bacteria or viruses. Just any herbal won't do.
You touch on this point above, in commenting about samento/cat's claw: It is not a matter of how long such natural substances have been around: it is a matter of the chemical interactions between the medicinal substance and the bacteria/virus.
You say, "I think my LLMD switched me to herbals because the side effects are less; for example (don't ask me how), the herbals do not wipe out all the beneficial gut bacteria like the pharmaceuticals do." I think you are right that pharmaceuticals are 'broad band' and kill more kinds of bacteria, compared to herbs. That way the 'good bacteria' (in the gut, for example) are not all wiped out by the herbs. This fits with your comment that "Somehow they [herbs] seem to work better with the body".
There is another way to avoid that problem tho, and it's to take probiotics to replenish the gut's supply of 'good bacteria'. My Lyme doc required probiotics for that very reason, to be taken not at the same time as the antibiotics, because the ANTIbiotics will wipe out the PRObiotics if taken too close together. The probiotics labels and instructions (or your doc) will say how far apart the antibiotics and probiotics need to be taken.
You say, "Also my insurance companies do not harass me (or him) and the cost is less than half, in fact maybe about a third of what the drugs cost." I had no trouble at all with the insurance company, and what is more important than the price is having an effective and well-structured treatment.
If I got Lyme again, I would follow the same approach as I did before. It works.
In recent years, the use of herbs instead of antibiotics has surged, because of fears about over-use of antibiotics ... but not because the antibiotics are ineffective or harmful in and of themselves.
As with any substance taken into the body, there are some people who will react badly to some antibiotics, but that individual reaction is not evidence that all antibiotics are useless or harmful.
If I were to get Lyme again, I would not hesitate to take antibiotics as prescribed by my very experienced and knowledgeable MD. If I were someone who is allergic to antibiotics, I would explore the possibilities of herbs, but my first choice would be antibiotics because they work.
I do not understand the bias against antibiotics: they are chemicals just as food and herbs are chemicals. What matters is how effective the medications are, and when dealing with serious and debilitating diseases such as Lyme, I go for the best and most effective treatments.
To my reading and in my own experience and that of others in my family, antibiotics used to kill the Lyme and other bacterial infections are the treatment of choice. If someone cannot tolerate antibiotics, that is a different situation, but fear of antibiotics should not, in my view, be the deciding vote.
These terms are not just differences in wording: 'antibiotics' is used in the medical world to mean specific groups of medication which do not include herbs. Blurring the used of the term 'antibiotics' to include herbs simply creates confusion. This is not simply a wording (or 'semantic') issue: it is a difference in meaning.
Pharmaceuticals are not necessarily 'harsher' than antibiotics: both terms apply to medications, which have a broad definition. Tylenol is a pharmaceutical, for example, and is generally tolerated by most people.
It is important to be precise about the nature of treatments and to understand the uses, advantages, and risks of each treatment. Shifting terminology does not help the situation.
You say, "Pharmaceuticals are harsher and each drug has a very specific focus, so for example it takes at least 3 different ones plus anti-biofilms to deal with the spirochetes." Do you have documentation from medical literature on that point?
You also say, "The herbal antibiotics contain multiple compounds that work together to kill the bad bacteria, and because they are not a single form of attack like our antibiotic drugs, the bacteria do not have resistance to them." -- Mmmm, not necessarily so: If the herbs don't have the right chemicals to kill particular bacteria, then it won't work on those bacteria. It's why even in tribal societies (such as in the African bush and the jungles of South America) use specific herbs to treat ailing members. Whether medications come from a pharmacy or a jungle, they must be able to attack and kill specific bacteria or viruses. Just any herbal won't do.
You touch on this point above, in commenting about samento/cat's claw: It is not a matter of how long such natural substances have been around: it is a matter of the chemical interactions between the medicinal substance and the bacteria/virus.
You say, "I think my LLMD switched me to herbals because the side effects are less; for example (don't ask me how), the herbals do not wipe out all the beneficial gut bacteria like the pharmaceuticals do." I think you are right that pharmaceuticals are 'broad band' and kill more kinds of bacteria, compared to herbs. That way the 'good bacteria' (in the gut, for example) are not all wiped out by the herbs. This fits with your comment that "Somehow they [herbs] seem to work better with the body".
There is another way to avoid that problem tho, and it's to take probiotics to replenish the gut's supply of 'good bacteria'. My Lyme doc required probiotics for that very reason, to be taken not at the same time as the antibiotics, because the ANTIbiotics will wipe out the PRObiotics if taken too close together. The probiotics labels and instructions (or your doc) will say how far apart the antibiotics and probiotics need to be taken.
You say, "Also my insurance companies do not harass me (or him) and the cost is less than half, in fact maybe about a third of what the drugs cost." I had no trouble at all with the insurance company, and what is more important than the price is having an effective and well-structured treatment.
If I got Lyme again, I would follow the same approach as I did before. It works.
I think we're dealing with more of a symantics issue than anything... the antibiotics have not been stopped, we've just been moved from pharmaceutical antibiotics to herbal antibiotics. Pharmaceuticals are harsher and each drug has a very specific focus, so for example it takes at least 3 different ones plus anti-biofilms to deal with the spirochetes. Our medical science has developed by looking at more and more detail, and our drugs are extracted and refined and refined some more. Bacteria are amazingly smart in evolutionary terms - they very quickly develop mechanisms to survive new attacks, including new antibacterial drugs, and somehow they share these mechanisms with other bacteria, but I won't digress into the issue of anti-biotic drug resistance here! Plants have evolved as well, developing through the ages to keep up with the bacteria. The herbal antibiotics contain multiple compounds that work together to kill the bad bacteria, and because they are not a single form of attack like our antibiotic drugs, the bacteria do not have resistance to them. Probably the top anti-Lyme herbal is made from the inner bark of a South American plant commonly called cat's claw, this is cat's claw extract or Samento. It has been used effectively as an antibiotic for eons. Taken concurrently with other antibiotic herbals like cryptolepis, red root, teasel, and a couple others, they will kill Bb and its coinfections. Like pharmaceuticals, though, it takes time; as you point out, Bb has a long reproductive cycle and can be quite long-lived as well. A daunting invader!
I think my LLMD switched me to herbals because the side effects are less; for example (don't ask me how), the herbals do not wipe out all the beneficial gut bacteria like the pharmaceuticals do. Somehow they seem to work better with the body. Also my insurance companies do not harass me (or him) and the cost is less than half, in fact maybe about a third of what the drugs cost.
So far I have no issues with the change to herbals. I have my next appt Monday and we'll see what the dr. says. I'm still on biofilm "busters" every other week, which for the course of my treatment have been lactoferrin and xylitol (yes, the sweetener dissolves biofilms, just make sure pets don't get any because xylitol is extremely toxic to dogs).
Thank you for your continued presence here - you are proof that the far away light must be the end of the tunnel and not another train!!!
I think my LLMD switched me to herbals because the side effects are less; for example (don't ask me how), the herbals do not wipe out all the beneficial gut bacteria like the pharmaceuticals do. Somehow they seem to work better with the body. Also my insurance companies do not harass me (or him) and the cost is less than half, in fact maybe about a third of what the drugs cost.
So far I have no issues with the change to herbals. I have my next appt Monday and we'll see what the dr. says. I'm still on biofilm "busters" every other week, which for the course of my treatment have been lactoferrin and xylitol (yes, the sweetener dissolves biofilms, just make sure pets don't get any because xylitol is extremely toxic to dogs).
Thank you for your continued presence here - you are proof that the far away light must be the end of the tunnel and not another train!!!
Another question from me: May I ask on what basis your doc stopped antibiotic treatment after 4 months?
Lyme bacteria have a relatively slow reproductive cycle, so ending antibiotic treatment after 4 months may not have killed enough bacteria in enough reproductive cycles to get rid of them entirely.
If you also had more than only a Lyme infection (for example, I had Lyme and babesiosis), then the two or more other ailments may need entirely different medication over a period of time. My total antibiotic treatment went on for about a year; for example, first against babesia and then separately against Lyme, and I had and have no continuing symptoms, now several years later. Just wonderin'.
Lyme bacteria have a relatively slow reproductive cycle, so ending antibiotic treatment after 4 months may not have killed enough bacteria in enough reproductive cycles to get rid of them entirely.
If you also had more than only a Lyme infection (for example, I had Lyme and babesiosis), then the two or more other ailments may need entirely different medication over a period of time. My total antibiotic treatment went on for about a year; for example, first against babesia and then separately against Lyme, and I had and have no continuing symptoms, now several years later. Just wonderin'.
Hi RFK,
I'm finishing my 6th month of treatment and it sounds like our LLMDs might share a similar philosophy about treating with pharmaceuticals and then moving to herbals for the duration. What I have noticed is that as my primary symptoms are reduced, other things show up. I don't know if they've been present all along but overshadowed by more intense symptoms, or if, as the "clean-up" reaches new bacterial colonies in other systems in my body and they are uncovered and die off, the toxins produce new symptoms. For example, my major symptoms were overwhelming joint and muscle pain, but as that pain is reduced, I have neurological symptoms showing up: twitches, skin crawling, patchy itching and pain in small areas of skin, more mood swings, etc.; and I wonder if these are new symptoms as the antimicrobials reach deeper, or if my other symptoms have been reduced to the point where I can notice these other symptoms. I've been sick a long time so I suspect the bacteria have invaded most/all my body's systems, and I get new symptoms as the medicines get to them and they die off. Headaches weren't usual for me but I've had a couple cycles of relatively mild headaches during my treatment. I believe it's because the little buggers are being eradicated from my brain and nervous system, but they make us miserable as they die off.
Anyway, mention it to your doc but I'm going through similar symptom evolution so I'm thinking it's the antimicrobials doing their job that makes us experience changing and new symptoms. Here's to the day all the symptoms are gone! Merry Christmas to you also, and I hope you are feeling good through the holidays. (And beyond...)
I'm finishing my 6th month of treatment and it sounds like our LLMDs might share a similar philosophy about treating with pharmaceuticals and then moving to herbals for the duration. What I have noticed is that as my primary symptoms are reduced, other things show up. I don't know if they've been present all along but overshadowed by more intense symptoms, or if, as the "clean-up" reaches new bacterial colonies in other systems in my body and they are uncovered and die off, the toxins produce new symptoms. For example, my major symptoms were overwhelming joint and muscle pain, but as that pain is reduced, I have neurological symptoms showing up: twitches, skin crawling, patchy itching and pain in small areas of skin, more mood swings, etc.; and I wonder if these are new symptoms as the antimicrobials reach deeper, or if my other symptoms have been reduced to the point where I can notice these other symptoms. I've been sick a long time so I suspect the bacteria have invaded most/all my body's systems, and I get new symptoms as the medicines get to them and they die off. Headaches weren't usual for me but I've had a couple cycles of relatively mild headaches during my treatment. I believe it's because the little buggers are being eradicated from my brain and nervous system, but they make us miserable as they die off.
Anyway, mention it to your doc but I'm going through similar symptom evolution so I'm thinking it's the antimicrobials doing their job that makes us experience changing and new symptoms. Here's to the day all the symptoms are gone! Merry Christmas to you also, and I hope you are feeling good through the holidays. (And beyond...)
Greetings --
A few thoughts and questions:
-- What did the MD test you for (which possible infections: Lyme, babesiosis, Ehrlicia, and some others)?
-- What medications were you given and for how long? and ...
-- What does your Lyme doctor say about your continuing symptoms?
It is possible that you were not treated long enough, or that there were hidden infections that the medication you took was not the right ones to kill all your infection(s).
Do you have copies of all your test results? Sometimes taking those to a different Lyme specialist will bring new ideas. Lyme and its 'friends' are tricky that way.
I would not wait to see if the symptoms go away ... if there is still something lingering, then the sooner it is identified and treated, the better. Don't worry -- just keep going till you are sure everything is taken care of.
Keep us posted, okay?
A few thoughts and questions:
-- What did the MD test you for (which possible infections: Lyme, babesiosis, Ehrlicia, and some others)?
-- What medications were you given and for how long? and ...
-- What does your Lyme doctor say about your continuing symptoms?
It is possible that you were not treated long enough, or that there were hidden infections that the medication you took was not the right ones to kill all your infection(s).
Do you have copies of all your test results? Sometimes taking those to a different Lyme specialist will bring new ideas. Lyme and its 'friends' are tricky that way.
I would not wait to see if the symptoms go away ... if there is still something lingering, then the sooner it is identified and treated, the better. Don't worry -- just keep going till you are sure everything is taken care of.
Keep us posted, okay?
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