Topic: What is going on here? some getting well with supps alone?
Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
I am about to loose it.
This has nothing personally to do with you Gwenb, I just want and have to get this out after reading your post.
Why is Gwenb getting well with supps? I thought lyme was a serious disease? I have lyme, I will die without antibiotics, and others ARE dead because of it, and here someone can get well with supps?
Can someone please let me know what is going on?
I became allergic to ALL supps, and all foods because of lyme, back on antibiotics and I started to get somewhat well. I became so ill I was waiting to die, then found out I had lyme the first time and went to see a LLMD,
and started to get well with antibitoics. I also had/have BABESIA, could this be why I canot get well with supps? I read the obituary and others are dying from it.
What is going on here? Please let me in on this.
I am not saying you are not well Gwenb, I have read your posts and you take many things, you had many symptoms, but something is wrong, if you can get
well without antibiotics and others cannot, is this because LYME is like lupus, or actual MS, that some die from it, and others can still lead normal lives? but have to watch it?
If this is true, then lyme is like MS, or Lupus, being that, it kills some of us, and some of us it disables, and some of us, can get well with supps.
Lighten this mind of mind before it blows.
Trish
Posts: 1250 | From Canada | Registered: Aug 2004
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posted
I have had four Lyme flares since 1982. In 1982 and 1986, I got better eating right, getting sunshine and exercise.
In 1991 I had another and got better having my amalgams out, chelating, and going on the anti-candida diet.
This flare began in 2003. I did not know I had Lyme until last December. This time is worse, I need antibiotics. The previous treatments helped me tremendously ... this time I don't have to worry about metals/candida (so far anyway).
I also have babs.
I think it all depends on your immune system and your bacterial load whether some of the natural stuff to support your immune system will work.
This time, it's natural along with abx/anti-protozoals.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
I have an ND who felt my massive supplements were the major thing in keeping me together. I was whining one day about all the stuff I am supposed to take, and was getting fed up with it. Tested all.....and all were beneficial for the body.
Enzymes, choline/inositol, minerals, b-complexes, omegas, flax oil, anti-fungals, things to detox liver, kidney, lymph, mushroom immune complex, mushroom neuro re-building, bla bla bla.
It is embarrassing when you go to a new dr. I am sure other people just put one or two on their forms. If they want an accurate statement from me, I have to carry a print-out. (I only do that for llmd, the rest I work from memory).
I use an ND to test which ones, and how much. Some do not pass muster.
Perhaps the brand/manufacturer may play a part in your system rejection. I just started some new liquid multi and greens, and some Cell Food.
The new multi and new greens make me feel normal/great. I can feel it when they wear off. This was not the case with the old barley greens and tablet vitamin. I like to try to rotate brands.
Northstar
p.s. CaLyme posting made me add this on. I am on abx and have been for several years. I am not ready to leave them yet. But I need to help the body heal, too, while it is fighting. So I do not do "just" supps, but they are important adjunctive to abx.
And I do take both abx and supp "vacations".
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
In 8 years of facilitating a support group I have seen ONE person get well with cats claw & colostrum & he did not get full remission.
The ONLY full remissions I have ever witnessed in real life with Lyme are with abx.
There are 2 groups with agendas pro-herbs Rife etc.
1. the people that make money selling them hype them online
2. the anti-abx anti-ILADS IDSA camp which wants people to believe that abx for Lyme aren't important
I *do* believe there are probably a few people out there who ride out Lyme flares or sickness and get better through their own immune systems BUT I believe they are rare. I do believe there are probably some people out there who are herbal successes but again, they are rare and I have never met them in real life!! Around here they don't exist, I have never met or talked to them and I am a local hotline for Lyme-
Just be aware that everyone on here does not exist... That is why I like talking on the phone with people or meeting them in real life- because otherwise I wonder-
All those people locally doing Buhner protocols longer and longer and longer now- still- not ONE remission- NOT ONE!
Sincerely, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
I guess I would be interested in asking a different question altogether. Do people who utilize herbal remedies and other supplements in addition to antibiotics fare better than those on antibiotics alone? My question is based on what seems to be a prevailing treatment modality of LLMDs who use a combination of the two. To simply question as to whether one is better than another is a false dichotomy.
I do not claim to know the answer. However, extensive review of peer review literature including meta-analysis documents and conversations with LLMDs and other patients all indicate that supplemental treatment is beneficial in reducing the severity of symptoms and may help boost the immune system.
I hope others can jump on to this thread. I really would like to hear from people who tried both abx and supplements and hear their stories.
Warmest Regards, Healing in NJ
Posts: 44 | From NJ | Registered: Aug 2005
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Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
I was the one who started this thread, and I did the herbals before the antibiotics and I still was very sick, I went on antibiotics,
and I started to get well,
I then tried herbals again, went off antibiotics, after doing much research, and still became sick again and back to antibiotics.
To get me to take an antibiotic/s I would have to be near death, or almost dead, I was so against the antibiotics because I thought I could kick this thing on my own.
It was at this time, the first week on antibiotics that a whole new world opened up for me, the power of pharmaceutical drugs, and without these,
I simply would not be.
So, for me to have to take these antibiotics, it tells me, how bad this lyme can be.
That is why I post this message.
because theres gotta be more to it then I am reading,
I thought natural therpaies cured everything, and here I am, wrong.
Trish
Posts: 1250 | From Canada | Registered: Aug 2004
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
I am not against herbs and supplements, but sometimes people believe all supplements are natural and all pharmaceuticals are bad.
The truth is, most supplements you buy are processed. When you take a processed herb, you are usually getting a much higher dose than if you just went and ate that herb, or made a tea from the herb.
I use a mix of pharmaceuticals and supplements/herbs. I felt my body failing me last year and I seeked out a doctor to help me with supplements.
I think the supplements I take counter balance the medicines I take, and the damage done by the Lyme. But I am still wary of the amount of supplements I take, because I don't know what's really in them.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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Greatcod
Unregistered
posted
There are so many variables that impact the success of any treatment, and we very often don't account for them on this board. 1. The person's level of health before being bitten. 2. The persons age, and possibly gender. 3. The amount of time between the bite and the diagnosis and treatment, by months and years. 4. The strains of Bb that the person is infected with, and the ABX used to treat. 5. The bacterial load at the begining of treatment (related to 3). 6. ABX dosage, or the herbal mix. 7. The person's immune profile--immune systems have variations. 8 Placebo effects. 9. How long the remission lasts 10. Co-infections
And I am sure more. Unfortunately, Lyme becomes a very complex illness after the first month or so. I know that I have very much wanted a "clean" answer to my problem, a "magic bullet". It seems that its just not there.
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Here's my strategy:
I have only major medical coverage, so flying out of state to see an LLMD and getting IV abx for my 30 years of lyme would be making a decision to bankrupt.
I don't want to go there. I want to have it all -including both my health and my home.
When diagnosed with lyme about four months ago, my gut was in such bad shape that if I could get someone to give me longterm orals, it would probably have deteriorated my health rather than helped.
So I went on every natural and herbal protocol I could find and could get my hands on, along with help from a good ND and kinesiologist.
I'm getting better. Fast.
Notice I didn't say cured.
My plan is to keep with the current natural/homeopathic/complementary process until I no longer get rapid progress.
Then I may still hit it hard with some Bicillin IM and flagyl, even if I have to go veterinary, and see what happens.
The protocol I am using is so labor intensive that I would be very happy to exchange it for "just abx". So when somebody says "just supps" I have to breathe a deep sigh of resignation, and recommit.
Something I especially appreciate about this forum is that for the most part folks have a healthy respect for complementary medicine.
I like being able to both read the research and get anecdotal information from people on what has worked for them. Then I get to make my own informed decisions and see how it turns out.
bejoy
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hi bejoy
glad to hear you are getting better
wondered if you could share what has been helping you
Thanks
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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JimBoB
Unregistered
posted
The only supplements that I take are vitamin C and Vitamin A.
Otherwise I pretty much stick to Traditional medicine, Herbs.
I tried the modern Western medicine of antibiotics, but it was destroying my stomache so had to quit it after about two months of it.
I went back to the traditional herbs and have been getting better ever since. From about 30/40% to about 80/95% now after 18 months.
And I have heard of many who have gotten "well" on herbs and supplements. You can even find some here on LymeNet.
Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
WE DONT KNOW enough about lyme if this is happening.
If one has lyme, which is a bacterial infection, it should then be killed with antibioics.
If herbs are getting you well, then somethign is VERY wrong here.
Lyme, it is a bacterial infection, and it cannot be killed with herbs, the herbs must be doing something else.
Herbs cannot kill a pneumonia, antibiotics do, so the herbs everyone is taking are doing somethign else, not killing lyme,
I feel this. Something is going on, and I see NOW why we are given such a hard time, we need to prove more, because this is just not good enough for me, as it is not good enough
for the other ones that are against us, in time, hopefully we can have more info, it is too much INSANITy
dealing with this for me. NO concrete answers when you want them sometimes.
PS, I know everyone does there best to figure it out, this bloody disease, so I am not calling anyone down.
Trish
Posts: 1250 | From Canada | Registered: Aug 2004
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I am not sure how to respond - I feel a little like I am under attack. When I first came to this forum I was very sick, as are many many people here. I researched and read, and researched and read and gradually over 5 years I pulled myself up to a level where I am functioning well - I still have Lyme disease but I am functioning well.
I shared my story because I believe there are many paths to getting well - abx, herbs etc. I chose not to do abx, which is not to say that I might not do abx in the future, because I have met no one, who has had Lyme disease over 10 years, for whom abx worked (that might be changing because I have a good friend who just finished 18 months of abx and has not relapsed - she had Lyme disease for approximately 10 years).
I also shared my story to give hope to people that if abx fail there are other routes that some people can use to improve their health.
I understand your frustration Trish, I was at a point not so long ago where I felt like death warmed over.
Sarah I take offense to the insinuation that I am out to make money or am part of the IDSA camp - or that I may be fictional - none of which are true. I belong to a Lyme Disease Support group in Vancouver BC (we meet in person 1x a month). I am active in the Lyme disease community in BC, including publishing an article in our national newspaper on the perils of Lyme disease.
For many people abx are the way to go, however for a large subset of people, abx do not appear to be the answer. I wrote about my experience as a means of giving other people hope.
In regards to herbs being unable to address bacterial infections that is incorrect. There are many herbs, and some vitamins, with anti-microbial and antibacterial properties. Many of the herbs I am on have these very properties.
I understand the frustration, the anger, fear and rage of being sick with Lyme disease, however, one of the reasons I first came to this forum was because of the openess and the free exchange of information about traditional and non-traditional modalities to treating Lyme disease. I hope that openess will continue.
Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
Gwen,
Herbs will not kill an infection, that is where people get into trouble with here, if you can show my studies done, then please do, but the only thing I have seen proof that kills lyme is antibiotics.
I have heard of others dying trying to fight with herbs, if there are studies done, that herbs KILL lyme or other potent germs, then
I want to see studies, there are not. THAT is how I almost died, the misleading information, and it can kill some of us if we dont know
how bad lyme can be, because it near killed me.
I dont know why you can get well with supps, but it just does not seem right, that you can have lyme, and I have lyme, and I am dead without antibiotics, and you are getting well with supps
That is not right,
I am happy you are well, but we dont understand lyme because this cannot be right.
I was lead astray by people telling me on other websites that I could get well with supps, and herbs, I could not, but, now I know.
Whatever makes us well, that is all that counts, and i am happy you are well, but you cant kill lyme with supps, or herbs, and if you can, I have to see proof, and I have never seen any.
I have with antibiotics, and I can feel that proof.
I think this is an open forum, but also many have or are VERY sick, some have died from lyme, so people just want to voice.
I sometimes wonder if I have something else besides lyme, some dealthy bug that is in my system,
Trish
Posts: 1250 | From Canada | Registered: Aug 2004
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Trish,
So you know, there are also no studies that show long-term abx is effective in curing Lyme. I'm not saying that they don't work, but the studies are not out there.
So you cannot rely simply on studies.
There are herbs that have anti-microbial properties. I don't know if they are strong enough to kill Lyme or not.
Remember that many antibiotics and other pharmaceuticals come from plants, or from chemical properties of plants. The pharmaceutical isolates the chemcials and provides them in a specified amount.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Trish, there is always a bellcurve with any pathogen. There are guys who never got AIDS in spite of repeated exposure. There are folks who die of the flu and folks who get exposed and never get it. In the days of polio there were mild cases of polio and there were cases where kids had to be in an iron lung. Many people exposed to tuberculosis never know they had it, and some get sick and die of it.
In the case of "lyme" it is a stupid name because what should be said is "multiple tickborne intracellular infections." Borrelia--300 strains, some wild type and virulent, some mild and self limiting. Babesia--many strains, probably very different virulence. Erlichia, bartonella, viruses, maybe fungi, microfilarial worms.
Probably a tick with a bunch of infections or multiple tickbites overwhelms the immune system. Your response to each of those microbes depends on your genetic individuality so it gets VERY complex as a clinical picture.
Some herbs are powerful antimicrobials which is why RIAMET is a drug that uses artemisinin which is from artemisia. They discovered it because one area of Asia, nobody got malaria. They were using the herb. So now the herb is a drug.
CaliforniaLyme, who is a wonderful person, is still on amoxicillin. She has to stay on it. Who knows why. Others take antibiotics and antimalarials and eventually reach 90-95% and hold it.
Posts: 2276 | From united states | Registered: Jun 2004
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Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
Gwen,
I am looking for specific articles and studies done on lyme, Herbs that have been clinically tested for lyme, not other infections. I;ve gone through some of those and none say lyme.
I have lyme, and babesia, that is what I need to treat. I dont have TB.
All I want is the proof that herbs kill lyme, studies done, I called a herbal company that said their herb killed lyme, guess what?
they told me there are NO studies done, that is costs too much to do a clinical study and they did not have the money, I had this happen with another company that claimed their product
killed lyme. It did not.
With info that is misleading someone can die, that is what I am getting at.
And you wrote in your comments here that you have spoken to NO one really that has had lyme over 10 years that has gotten well with antibiotics, long term. A friend you said may be better, from them
That is not at all what I found out after many days/months of research on lymenet and messaging many on here that have had lyme untreated as
long as I, 15 years, back then, now 18 years, have you done research on this site, about how many have their life back from antibiotics, and some of them, many of them infact
have had lyme undiagnosed for years.
That is when, after doing my research on here, that I knew what I needed to get well, because there were success stories MANY of them, that got well with long term antibiotics.
Some of them are on them off and on over the years, but without them, they would be dead.
I am simply saying, there has to be proof that lyme can be treated with herbals, because if there is not, and someone tries it, they coudl die,
I just about did, that is why I write this.
I was told, you cannot die from lyme, or babesia, well then, maybe i have something else, ? Nothing ever showed up, and why then woudl I get better with antibiotics, and worse when I stop them.
AND Gwen, I want you to know, that I am happy you are feeling better from all that you have done, and I dont know why it worked for you, just glad that you found something to get you back to living better.
I hope that it continues.
Trish
Posts: 1250 | From Canada | Registered: Aug 2004
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
Trish, i contacted lyme in jun 2005 but believe i've had it many years before that.
i was on biaxin, no results, cipro made me deathly ill, then ceftin, then amoxy. my symptoms became worse.
my stomach is "trashed" and so is my colon. I am left with diahhrea daily. i am getting weaker and having numbness.
i cannot travel out of state as i don't have the money but am going the herbal route. i can find no doctor in the state of Texas that believes in lyme, so i must self treat.
I, by the way, do exist. I am a real person, short chubby overweight, but a real person.
I believe that plants hold the answers to many of today's serious illnesses, if we only look. the pharmaceutical companies, i believe, are withholding the cures for many illnesses due to money -- simple as that.
i don't think anyone would say that are getting well on herbs if they were not. we are all different and respond to treatments differently.
i, for one, felt that antibiotics were killing me, sterilizing my entire system no matter what i did.
i think herbal is the route to go right now because i can't get antibiotics from any doctor.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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JimBoB
Unregistered
posted
WOW, I can't believe I am reading some of this rubbish on this thread.
All I can say is WOW!!!!!!!!!!!!
SOME of the thoughts are really sick. Not sick with Lyme but sick thinking.
I am LIVING proof that Herbs most definitely help tremendously when antibiotics do NOT.
I would think MOST of you know MY story by now. And yes, I am real also, right here in Central Wisconsin, a HOTBED of Lyme.
I got bit back in 99 as I have reported MANY times, yet you naysayers either haven't had the gumption to really read what I have written, OR you just choose to cut people down who are not on the expensive drugs.
I realize this IS a drug infested world, but give us people who want to do it the 'right' way a break. At least UNTIL YOU can come up with some kind of proof to refute us.
And ONE person who CLAIMS to have had a bad experience with Herbs is no proof IMHO.
I know for a fact that abx did NOT cure me from Lyme. Yes, it helped for a short period, but I relapsed after 8 or 9 months off the abx.
Then I go back to my duck and he says EVERYONE is cured in 21 days of abx. And won't give me any more abx. WHICH I am thankful for, because then I was forced to FIND a superior alternative.
For SOME it is herba and abx together. But NOT for me. The abx with the herbs set me back, a long way. After dropping the abx, and sticking to the herbs for awhile I got back to where I needed to be when on herbs alone.
NOT 100%, but I went from days at 30-40% up to days now that run the gammut of 80 to 95% of my potential.
DO herbs KILL bugs like so many assert? I personally do not believe they KILL very much. I do believe however that they remove many of the BAD symptoms, and let us FEEL better, and because we FEEL better, we get going again and our immune systems build up to where they need to be to get us on the road to health. Our immune systems were designed by a MUCH smarter person than any MAN or WOMAN on earth today.
MAYBE we will never get totally rid of the Borrelia bugs, BUT we NEVER get rid of THOUSANDS of bugs. The trick is to get them into balance and let them live "PEACEFULLY" in our systems, along with ALl the GOOD bugs we have in us also.
There are NO drugs made today, or probably ever will be that will get rid of all bugs from our systems. NONE.
Antibiotics are BAD for the most part for our systems. YES they will kill certain "bugs", but they ALSO destroy the GOOD ones too. AND make us WEAK so WE cannot fight the bad ones. They destroy our stomachs and intestines. I am a perfect example of that. We have yeast problems. Our livers are destroyed, etc., etc..
Puleeze Trish, DON'T tell us that it is WRONG for herbs to HELP us get well. THAT is crazy talk, and couldn't be further from the truth of it all.
IF we didn't have all these stupid MANMADE chemicals destroying GOD's eco-system, we wouldn't be in all the trouble that we are. You can only go so far, fighting fire with fire. THEN you have to find something that will put it all out.
Nature was DESIGNED to do that, IF we LET IT.
AM I "cured" from Lyme? My doctor thinks so, I do not. BUT I am a heck of a lot better off NOW than I was before herbs, and especially with abx.
I can live with the 90% plus or minus that I am at. AND I may have to.
And as far as dying, I WOULD have died if NOT for the herbs. AND I would have died IF I stuck to the abx.
I have been CLOSE to death many times in my life, so I know what it is like. I have been in this body for almost 66 years now, and I KNOW how it operates for the most part.
shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
I really appreciate the range of comments. I think it speaks to the fact that we just don't have all the answers. Yet.
Antibiotics have antimicrobial properties. Some also have anti-inflammatory properties.
Some supplements have antimicrobial properties. Some have anti-inflammatory properties.
When we take these things in late-stage Lyme, what is helping? Are we killing bacteria or feeling better due to lowered inflammation? It is probably both, depending upon what we are taking, what the disease is doing, etc.
When sick, a lot of the body's normal functions go out of whack, both from what the disease is doing, and from what our bodies are doing to fight the disease. Supplements and good diet may help replace those nutrients.
I'll bet if we went back 25 years ago and sat in on support groups for AIDS, we would have heard the same range of solutions. There is no one solution for either remission or a cure.
Yet.
Regards, Shaz
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