posted
I'm reading Dr. H's book in parts- some here, some there - its impressive. I find that the LLMD I'm seeing now doesn't seem to be addressing any of these parts and this LLMD is supposedly one of the best. I feel as though I'm paying the LLMD to prescribe me very high doses of antibiotics without considering any other factors. The LLMD actually recommended I read the book, but doesn't seem to follow most of the advice....
my main concern is that Dr. H openly states in his book that antibiotics are useful in treating the underlying infection, but the majority of his patients relapse once they stop treatment with antibiotics or herbal antimicrobials. He is admitting that antibiotics don't really work!!!! Isn't he? Of course, you can say that they don't work because there are the 16 other factors to take into account which he discusses in depth in the book. I'm skeptical....yes, they can be addressed, but that will not GET RID of the disease. It may make symptoms better, but there is still no way to keep lyme and co... from coming back. I've "met" very few people who say they've been cured by antibiotics and other herbals....its seems that it will never be over...it seems that there will always be pills to take to keep suppressed and help with symptoms (except for a few very lucky individuals).
Maybe I'm confused, and maybe someone can explain it better.....but now im almost convinced- for most people antibiotics are not the answer. He's seen thousands of patients and most have not recovered to the point where they have to take nothing or just a few supplements. Yes, we will get our bacterial load down with ABX, but most will relapse after stopping them.....
what then is the point and what is the answer?
Posts: 47 | From new york | Registered: Jul 2013
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sixgoofykids
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posted
When I originally heard him say that, it was part of the reason why I looked for what else might work.
I used photons for the bacterial infection, but while still using photons for maintenance, I worked on healing my body to restore health. Eventually, I no longer needed photons.
No matter what treatment you use, I think that's key. Restore the body alongside of treatment.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
I have come to accept that this may be a maintenance project for the rest of my life.
Once you reach acceptance you can relax some and then if you happen to stumble upon the cure all the better. I want to be happy in my life not always stressfully struggling for the unattainable and this doenst mean that I am giving up trying to get better.
At my point in my life I can handle the thought of this, but if I had not already had my family and they were not yet grown I might be feeling quite different.
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CherylSue
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posted
I heartily agree with Carmen. Antibiotics gave me my life back. I'm still on them, but trying Byron White Formulas concurrently. Hopefully, some day I can pulse the abx, and take the herbal formulas for maintenance.
For some people they go in remission indefinitely. With others it's a lifelong vigilance like those who take thyroid or diabetes meds.
Posts: 1954 | From Illinois | Registered: Aug 2007
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D Bergy
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posted
Not cured does not necessarily mean a life of misery.
My wife is not cured, but she is in very good health even with Lyme.
She was pretty ill at one time but frequency treatments got her where she is today, and will keep her there.
You just will have to find a more practical long term treatment method.
I have not given up on a cure, it just has not been discovered yet. Many are working on ot every day. I will actually be surprised if I do not find one.
Dan
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glm1111
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posted
A MAJOR part of the reason abx alone don't work is that antiparasitics are needed to treat the parasite/worm co-infections. Burgdorfer found filarial worms in the ticks that he originally dissected.
Researcher Dr. Eva Sapi is also finding these parasites in the ticks she is dissecting. Don't understand why Dr. H. is not on top of this. Dr. K. treats all of his patients FIRST for parasites and SECOND for Lyme.
Many that have been chronically ill are finding this to be the missing link. Everyone here should check out the PARASITE WARRIOR SUPPORT THREAD and www.lymephotos.com
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
I did 3 yrs of ABX with a hell of a lot of misery and almost no improvement . I also had complications from the drugs , but I was ill a long time before being diagnosed.
That said , I think GLM is on the mark with parasites , which I originally balked at . After seeing the die off of 3 antiparasiticals , I know parasites are a problem! I think they may be the real reason we stay sick forever after years of ABX! I strongly suspect it. I have been on antiparasiticals for 18 mos , rotating. I am far from cured, but I can walk 2- 3 miles most late afternoons. This is improvement for me! I still deal with herxing and die off every moring , but do feel these parasite meds are critical. Undfortunately , I do not think we get "cured" once and forever. They reproduce and we do not fully understand them.
If you are skeptical of the relationship of parasites , just try some ivermectin or albendazole. You will feel pathogens die ina miserable way . I still pulse these along with pyrantel and rotate . May I add that combining sovereign colloidal silver potentiates these , and any other drug or herb . Silver , I have read , attacks biofilm of pathogens by penetrating . Sovereign is a safe , nano particle silver used by many LLMDs.
Posts: 153 | From Huntsville Al | Registered: Jun 2013
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quote:Originally posted by glm1111: A MAJOR part of the reason abx alone don't work is that antiparasitics are needed to treat the parasite/worm co-infections. Burgdorfer found filarial worms in the ticks that he originally dissected.
Researcher Dr. Eva Sapi is also finding these parasites in the ticks she is dissecting. Don't understand why Dr. H. is not on top of this. Dr. K. treats all of his patients FIRST for parasites and SECOND for Lyme.
Many that have been chronically ill are finding this to be the missing link. Everyone here should check out the PARASITE WARRIOR SUPPORT THREAD and www.lymephotos.com
Gael
Clearly in my dark field live blood analysis this past week one of these worms was seen, or one that looks like it. Certainly a nematode of some sort. It also came up in my neighbors blood exam a year or two ago.
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Catgirl
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posted
I agree with Six (support the body), Carmen (accept it and relax) and Gael (parasites).
IMO, parasites are a huge part of lyme. I think we all have them, even if they are not visible (like BB). I started to improve once I began working on them. The same thing with heavy metals. The more I get out, the better I feel.
I also believe that a lot of people don't make much improvement or get anywhere because of proto (FL1953). IMO, it's even more missed than even parasites. I think this is a huge part of the problem. I didn't think I had it. I ate fat, nuts and animal products all the time. I thought my lyme symptoms were all lyme, bart were all bart, babs were all babs (not the case). This is probably why it's so missed.
I don't believe anyone completely gets rid of lyme--I think they knock it into remission. I do however feel that abx are needed. They aren't the sole answer though. I think we have to rotate abx, herbs and work on parasites and heavy metals. Some people can't tolerate abx so they have to do something else. For these people, and everyone else, I would start working on parasites.
I feel much better since I've been supporting my body too. I tend to get into kill-the-bugs mode too much and have to remember to support my immune system. I also feel like the more alternative things I do helps (confuses the bugs and I feel better when I do them).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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lax mom
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posted
My husband is only on a few supplements to maintain. He was on IV for 4 months and oral abx a total of a year.
I would take his progress in a heartbeat (whether it's a remission or total healing). He's back to living a full, normal life.
I've started trying to calm my Autonomic Nervous System. I finally realized that all the stress and constant cortisol was only making things worse.
posted
I think the point is that if you don't support and address other factors such as adrenal dysfunction, thyroid health, candida, food intolerances etc… It's a mute point.
Herbs are supportive in this way along with having antimicrobial and cyst busting properties.
The longer one has these infections the more complicated the entire internal terrain is to treat. Antibiotics alone will not accomplish this.
-------------------- unsure445 Posts: 824 | From northeast | Registered: Jun 2008
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lax mom
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GretaM
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posted
Excellent points made by everyone here. I agree wholeheartedly.
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Abxnomore
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posted
Unsure, you summed up his approach well.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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Brussels
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posted
Energy tests done by a good practioner can take you there, to healing, in my experience.
Whatever healing means, even if borrelia can come back again one day. If it stays dormant, you feel just nothing. It is EXACTLY like no lyme anymore, and that is how it is.
If it can come back one day, well, many things can come back one day, but while they don't, you are lyme free.
Abx in my opinion, will not help you build your body. They are on the opposite side, more on the destruction side.
But they are sometimes necessary, but I never believed they bring health. They are the emergency procedure to escape death, but they have very little to do with building health, in my opinion.
I got my life back, so did my daughter. Many who are years and decades fighting lyme, simply cannot believe this is true. Well, we are still being bitten by ticks every single year. Lyme does not come back, so far.
I still eat as well as I can, I take some enzymes, do my photons, yoga breathing, chlorella, whatever I think I need, but I'm not on killing-mode anymore, for about 4.5 years.
I am a firm believer that winning this is like lottery, if played in the dark, without energy tests. Many will get to 80% by trial and error. Few will get to 90%. Very few will reach 95-100%, but it is possible, in my opinion, with proper energy tests.
It is exactly at 80% that the major difficulties will arise, as you tried everything you could until then, and you still need 20% to finish the war.
Anyway, my daughter and I are fine, no lyme treatment, no lyme symptoms, and still being bitten every year. I can't say it will never come back, who knows? But for the moment, it doesn't.
I used to relapse about 2-4 months after I stopped herbs. It was only photon therapy that put borrelia dormant for longer (in my case, very long, in my daughter's case, for a year or 2).
Posts: 6200 | From Brussels | Registered: Oct 2007
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Lymedin2010
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posted
I bought the book & have not been feeling well enough to get to that part. I see Dr. H & I am under the same impression.
If I would have known all this, I would have never continued with ABX. I would have stopped while I was at 90% & not continued to get worst & worst over more ABX & time.
There is a reason why another book was named "Cure Unknown." Because it is not known. Everyone around me only took 4-6 weeks of ABX & there are quite a few people on my block and they stopped.
They all have symptoms, but no one is like me, the idiot who continued to take ABX in the hope of eradicating this disease. From what I know of having Lyme for years & not knowing it, is that the immune system is the best at keeping it at bay as compared to ABX.
When it gets too much, then you slam it down with ABX & then stop. I started off not knowing really if I had Lyme before any ABX. With ABX I developed over 2 pages of symptoms, where I did not have any before.
People need to hear both sides of the story. We can't paint hopes and dreams out of just a very few handful that come out of the chronically sick stage.
Posts: 2094 | From NY | Registered: Oct 2011
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Kudzuslipper
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posted
Very interesting discussion.
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lpkayak
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posted
I couldn't read this whole thread but I agree with Carmen I'm lucky enough to be old and just hope to keep going a little longer I feel so bad for the young people that get this the babies are born with it but if the drugs and the herbs can keep you going while longer maybe they will finally figure out a cure
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Brussels
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posted
Dr. K. has been talking about that for years. He said that in the 90s, people were still being miraculously 'cured' by abx (but he said many of these returned about a decade later with strange symptoms, meaning, chronic lyme).
For the 21st century lyme sufferers, he said he saw no one being healed with abx only. He suspects electrosmog is one reason for the weakening of the immune system or cell functioning, possibly increase of toxins another reason.
Building the immune system, having a good and deep sleep without much electrosmog, a nourished body and mind, clean organs that function well that is the only way out of lyme for good.
In the long term, I do not see any advantage in using hard chemicals, unless the reason is only to save a life. There are TOO MANY alternatives for abx, to insist on them as a long term treatment.
Short term, I agree, they can be a life saver. But long term, it is a life destroyer, not only for the person who takes them, but for the rest, who have to live with stronger strains of resistant bacteria, and the whole environment.
Buhner explains that well in a book, that we wee abx into the sewage and we virtually find the most pristine lakes and rivers with amazing amounts of abx. It comes back to us, then, as the food chain we consume has already resistant strains, be it veggies or animals.
Plus the mold, candida, fungi that develop, that is EVEN HARDER to eliminate than borrelia and most pathogens.
Destroying the immune system, accumulating chemical toxins (from abx and herxes), making your GI tract a paradise for candida will not take you out of chronic lyme, but send your health backwards in the long term.
Just imagine those zillions of microorganisms all over, on the skin, air, water, food, mouth, GI tract, earth... Your body is full of them.
How to keep them under control, attack only the bad, let the good one still help us?
Only an intelligent system can do that: your own body's immune defense, not a cocktail of blind chemicals. The chemicals will help you short term, I agree, but long term, your body has to take in charge.
A clogged liver, overcharged kidneys, a sluggish lymph, a GI tract full of candida, parasite and toxins, bad sleeping (not deep enough), energy meridians that are blocked, accumulated heavy metals all over, food allergens, psychological blockages that mine the immune system, these are the targets to treat.
That is what dr. K's been doing for decades, he treats not only chronic infections but any chronic disease in a similar way.
Posts: 6200 | From Brussels | Registered: Oct 2007
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ukcarry
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posted
I agree with everyone else: i would welcome ANY improvement to my current condition. If that means that i am on a maintenance programme just to keep that, then so be it.
If you are lucky enough to make big improvements, then , as had been said, I think it will help you to relax and accept that a plan to work on keeping the level you have reached is the way to go. For many people, the potential for lyme to re-emerge after a shock to the system of some sort will always be there.
The main thing surely is to be able to get some quality of life back and use what you have learned to move forward.
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map1131
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posted
It's a BIG picture and you can't do just abx, no matter how many different ones at one time or IVs and wipe out this illness.
It is very complicated and involves so much extra work on the ill persons part.
If it was so simple we (all of us) wouldn't need a on-line support group to gain knowledge, options, there are so different protocols that can be used with abx or without abx.
It's just figuring out what is best for your and treatment. Each of us are fighting a group of different animals, what I like to call the bad guys.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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GretaM
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Pam-I agree with you 100%.
Each of us has a different enemy to battle.
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Catgirl
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posted
I love everything Brussels wrote. Unfortunately, the ART practitioner I saw was not a good listener, and actually wrong about a couple of things, so that didn't work for me. I would love to find a good one, but cannot take the stress of travel, so I energy test myself.
I am off major abx and have been for a while. I occasionally take alinia though for parasites. It does help. Abx are a decision that each of us has had to consider at some point in time. I am sorry I ever started them though, but maybe I needed them.
I think Lymedin2010 is right, we need to be honest about the bad things abx do to us. There is a risk in taking them. For me, it was my gut. 2 weeks of abx destroyed it. It has never been the same since.
They help many people with lyme get to a point where they can live with their symptoms though. Some people actually recover. What the true percentage is though is unknown (relapse). I think most of us were hoping to be one of the lucky ones who actually could recover on them.
Some people don't recover, but maintain. For others, abx makes them worse. There is no way for any of us to tell which category we will fall into though. The only way to know is if we try them. That said, I wish I had followed Brussel's path.
The point is, they are not the answer for everyone. But if we start to deteriorate, we have to do something. Each of us needs to find whatever works for us. The alternative stuff seems to help me, along with treatment from my lyme specialists. I am ever so grateful for them.
I see value in having both an ART practitioner and a lyme doc who prescribes abx. I think we need to bridge both worlds. The ART practitioner I saw though was not into blood tests and completely missed some nutrients I was depleted in. This is where a doc who does use tests is quite beneficial.
Ideally a lyme center that offers both types of treatment would be so helpful to everyone. Then a patient could try something else without having to give up entirely on their doc who spent countless hours identifying patient patterns and issues (very important to help connect the dots).
Pam is right, it is a big picture. I wish you all peace and success.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Lymedin2010
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posted
How long did it take us to come to this realization? Did any of our LLMD's tell us that taking ABX might be a never-ending loop hole? That if it is not life & death, then it almost becomes pointless?
I have seen 3x LLMD's for my family & NONE of them mentioned this. They only stated, "Don't worry we will get you better!"
When I first got sick, I used to tell everyone ABX, ABX, ABX is a must when fighting Lyme. Now, I will have to tell them to role the dice and that ABX might not be the answer.
I always like to be truthful & I could simply not contain myself when warning people about Lyme & I cannot contain myself now about warning them about the hit or miss facet of ABX & Lyme.
If there is any focus it would be on lifestyle, sleep, immune support, good diet, supplements, avoiding stressful situations and avoiding environmental exposure. I always fall worst when avoiding anyone of these, more so than the continuation of ABX getting me better.
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Kudzuslipper
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I am finding this discussion so helpful having resorted back to ABX after an 11 month break.
Honestly, I did not note that admission in the book (I guess I skipped around a bit, which is easy to do on Kindle)
But hearing that this expert feels that everyone relapses... makes me more comfortable following my own intuition.
right now, ABX is good for me... many symptoms that had returned have disappeared... but I think I will not stay on for months and seek to wipe out every last bugger... doubt it's possible.
I am young enough that it still matters (and so are you Carmen and Kayak!!!) but old enough that I don't want to lose years to feeling horrible on heavy chemo/abx therapy.
But I say this as someone who was never as sick as some of you, and after having done 18 months straight of oral abx combinations with an llmd, that gave me mind back...and a lot less pain.
I think in a thread like this it's important to emphasize that abx (or herbals) are still important in initially treating... especially a new bite that can usually (we hope) be cured!
But even if you have had un dx'd lyme for years... I believe it can turn some symptoms around. I am so much better for my 18 months of sometimes torture. And got me to the point I am, so that I can focus on building up my immune system and my health.
[ 12-02-2013, 09:51 PM: Message edited by: Kudzuslipper ]
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surprise
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posted
I feel Bicillin shots with Tindamax wiped out my 'Alzheimer's' brain. So antibiotics have their place, IMO.
A lot of good points in this discussion- let us not forget the financial resources it takes for better health-
I have seen a few leading LLMD's combine their practice/ office space with a mental health counselor, hands on body healer/ massages, certified nutritionist...$$$
It can take a village, unless we are willing to do the work and education ourselves. If you eliminate almost all spirochetes, but stay in an abusive relationship, can your immune system take over for good health? Doubt it.
It does take dedication on the patient- to pay attention, and keep learning. Some of us, our body signals antibiotics are no longer working, they have served the purpose, time to move on.
Dr. H book was marvelous in the sheer detective work and testing available. I read the book, and in no way was my take away from it
Lyme and co- infection folks need to stay on antibiotics forever. The 12 point (16 point?) system or other areas to look at (thyroid, GUT health, viral, sleep)
tell us it's not always about antibiotics and kill, kill, kill.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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Lymedin2010
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I also agree & I assume we all know that ABX most definitely have their place. If it involves life & death, then it simply does not take a whole lot of convincing to attempt the risk. If it involved with an improvement of the quality of life, then of course.
I simply could not move because of my head & neck pressures and my exhaustion before ABX. It took only 3 weeks of IV Rocephin to get me to 90% with only those few symptoms before ABX. (Head & neck pressure, sudden exhaustion & shortness of breath that may accompany heart palps & slight noise & light sensitivity at times. That is it, I only had slight brain fog/pressure after 3 weeks!).
After those 3 weeks & with each passing week I got more & more Lyme like symptoms. Before that I had to only say to myself that it "HAD TO BE LYME," based on the number of people that got bit around me. It simply had to be, but still no way of knowing for sure, especially when test are negative and not being well versed in Lyme.
By year 1 of hard core ABX, I started to develop joint pain (besides 2 pages of symptoms that come & go now). I then tested for 2 Borrelia bands & knew more confidentially it was Lyme.
Exercise was hard & made me feel better at the beginning, but now I have more trouble doing exercise. In other words I am just getting worst overall.
There are only a very few drugs that helped. Once their potency wore off, which was rather quick then nothing seems to work or work as effectively as it once did.
Posts: 2094 | From NY | Registered: Oct 2011
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posted
I do not assume that WE ALL KNOW that antibiotics definately have their place. This is not true for everyone and I beleive is only true if that is the choice one makes.
I know of people who have literally been on their death beds, most literally on their death bed with lyme and who recovered not with antibiotics but with naturopathic medicine. My neighbor for one. A young girl for another who had to be carried into the clinic by the physicain after her mother pulled her out of the hospital because they weren't helping her and the doctors had given her up for dead.
Antibiotics create resistant microbes and this is why they stop working. They also impair immune function, degrade the bowel, cause candida and toxify the liver.
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lymeinhell
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posted
As one who got their life back 9 years ago and has maintained good health, I thought this discussion had a lot of merit.
From my own experience, antibiotics saved my life. I had Lyme for a decade, got rebit and caught Bartonella in 2003. Rifampin and Flagyl were my friends for 9 months, and then I was weaned off (1 pill a week) and put on Cat's Claw. I was by far symptom free, but my LLMD had the experience and good sense to differentiate my remaining symptoms from Lyme and Bart. They were from mineral deficiencies, parasites, candida, and a trashed GI tract from the abx themselves.
My LLMD is also smart enough to recognize that abx are not the end all cure-all. For me, they had their place in treatment as I was a walking Bart poster child. But without fixing all the other messes, you will never get well. Just staying on antibiotics waiting for that 'symptom free 2 months', without addressing any other issues, is taking a very simple view of a very complex illness.
I've spent the last 9 years fixing my trashed gi tract, parasite treatments, detoxing, and restoring mineral deficiencies. But I have a full and happy life, and for that I am forever grateful.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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CherylSue
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Thanks, Julie, for sharing your experience. You sound like you have a wonderful LLMD. I needed to hear that there is life after abx!
Posts: 1954 | From Illinois | Registered: Aug 2007
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desertwind
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posted
I am being treated by Dr. H. He was very clear in the beginning of treatment regarding the possibility of needing lifetime treatment of some sort because of the chronic nature of my infections.
I had been sick for close to 10 years, had multiple brain/neuro surgeries and pumped up with steroids for months and months post op. I was not in a good space when I first saw him.
Fast forward....After close to 2 years of heavy duty abx. treatment I am holding steady at about 95% functioning. I do tip on the down side every now and then but that is more from the consequences of long term abx. tx. Still dealing with yeast and parasites but can say that without hard core abx. for Lyme, Q-Fever and Bab.'s I wonder if I would still even be here. Like so many of us, I was so very sick and after seeing 3 different LLMD's, I sought out Dr. H. for that "one last chance". Glad I did.
I am in "remission" but also know that that can change at any time. If and when it does I will not hesitate to pulse in abx.'s. Till then I am doing well with herbals, yeast and parasite treatment.
I am back to doing the things that make me "me". Working and long distant running/hiking ( I know, I know..watch those ticks...)and feel so very blessed to have these things back in my life again.
Do I still have lyme and company? Probably in cyst form somewhere.....but I am functioning very well right now and know what I need to do to maintain this sense of healthy equilibrium w/out the use of abx. I do not know what tomorrow will bring so I am enjoying today.
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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CherylSue
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posted
Congratulations, Desertwind. That is inspiring to me as I've been on abx for 6 years and would love to get off.
Which of the Byron White Formulas did you use?
Best wishes, CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
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desertwind
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posted
CherylSue; It took me finding the "right" doctor for me to finally see results. Prior to Dr. H. I was off and on abx.s but never on for very long and never more then one at a time.
The Byron Whites I use now are; A-FNG Detox 2 NT Detox A-Babs A-L and sometimes A-P
I transitioned on the B.W's as I was pulsing off the abx.s. Increasing one while decreasing the other. It was not always a linear process but eventually my body sort of kicked in. Best to you as well. DW
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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CherylSue
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posted
Thank you for your response, DW. I am happy that did work for you.
I just received Dr. H's book today from Amazon. On pg 262 he states:
"Antibiotics are useful in treating the underlying infections, but they do not clinically appear to eradicate the infections completely in late Lyme Disease and MSIDS, as the vast majority of patients relapse when they're discontinued....Therefore, further investigation of herbal and integrative therapies is needed as an alternative to antibiotics."
This seems to correlate with what Desertwind said in the above post. She needed both therapies to achieve remission.
BTW, I also had 3 LLMD's including a well known one. Each had different protocols. It pays to shift gears once in awhile.
Posts: 1954 | From Illinois | Registered: Aug 2007
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TF
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posted
I got rid of lyme, babs and bart 8 1/2 years ago by going to a doctor who follows the Burrascano protocol. I had undiagnosed lyme and cos for at least 10 years before the cause of my illness was discovered. Still, I am completely well.
I don't take anything to maintain a remission--no meds, no supplements, etc. But, I don't smoke or drink.
I even had 2 epidural injections (steroids) a few years after completing lyme treatment. Still, my lyme did not come back. And, last year I took some steroid pills and inhaled steroids to treat a serious sinus infection. But, I never relapsed.
Burrascano says that a person will never get rid of lyme disease or stay in remission if they don't do a certain exercise program. It is weight lifting for one continuous hour every other day. This boosts the immune system.
My lyme doctor told me at the start that I would never get well if I didn't do the exercise requirement. So, I did it.
So, even Burrascano is saying that lyme won't go away with just antibiotics. It is a 4-pronged approach:
high-dose combinations of antibiotics supplements & life style (no smoking or alcohol, etc.) diet exercise (weight lifting)
We need to strengthen our immune system if we are ever to get rid of lyme disease. Antibiotics don't do that. Clean living, certain supplements, and non-aerobic exercise for an hour every other day strengthen the immune system.
These disease compromise our immune systems, just like AIDS. So, medications alone are not the solution. But, medications are part of the solution. The patient has to do many things to strengthen the immune system if they are ever to get rid of lyme.
There is so much the patient has to do to effect a cure. The cure involves killing germs, supplying what the body is lacking, strengthening the immune system, and cleaning up the terrain (getting rid of yeast and other things like parasites, metal poisoning, etc.)
I really think that this is all Dr. H. is talking about when he makes this statement. He is saying that it is not just a matter of giving the patient antibiotics. Antibiotics ALONE don't work. We must rely on our immune system to keep the remaining lyme and other germs in check.
Burrascano has often said that if a person can go 3 years without the lyme coming back, then the lyme won't come back. That's why I call myself cured.
Dr. H, Dr. Burrascano, my lyme doctor, and all of the top lyme doctors all had lyme disease. So did Pam Weintraub and her family. So did a number of my friends. We are all rid of it. All of these people got rid of it by following the Burrascano protocol. But, you can't think of the Burrascano protocol as just antibiotics, because it is much more than that.
You have to get your immune system back to normal if you are ever to be cured of lyme disease.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Brussels
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posted
This thread is amazingly good and interesting!
I am too in remission, for about 4.5 years. No treatment, no symptoms.
You know, when you have to build up your body to fight infections using herbs, cleaning organs, nourishing your body, etc, results may take longer.
But these results remain for longer!
When you destroy your body to fight infections, results sometimes come faster, but they wean faster too, as when you stop using the hard guns, your body has less on what to rely on, as chemicals do not build, but let your body with accumulated toxins, remaining strains of resistant bacteria, death of friendly bacteria that were helping you before, etc.
I do not agree everyone needs abx, but that is my opinion. I go backwards with abx, and no doubt, I prefer anything alternative to abx.
The problem with alternative treatments, is that you need them in combination. You need more time to try, research, and combine stuff than simply taking a chemical or another.
The advantage is that you mess less with your body long term, as many herbs and supplements help building your immune system, cleaning toxins and organs, very different from abx.
And many herbs also nourish, they have minerals that are are easier to absorb, for example. Abx never nourish. They are not designed for building, but for destroying lives (of pathogens and friendly bacteria).
When I find no alternative, I go abx too. But I swear that they usually do not work either when used alone. So I have to keep looking.
I think that to maintain remission, one has to do quite some things, like being careful with what you eat, some physical exercise, healthy life style, enough rest,....
.... take whatever supplements you think help the body to stay well (like Omega 3, enzymes, chlorella, vit D3, whatever fits your body and your problems / deficiencies...).
Once you have been through lyme hell, you don't want to go back there.
Once you get free of lyme treatment, you do not want to go back there either!!
Maintaining a healthy life style is much better and easier than suffering from lyme AND from lyme treatment.
But almost certainly, addressing ONLY pathogens will not cure anyone from chronic lyme, no matter what approach you use.
The only thing that will keep lyme under remission for years is not a drug, nor a combination of drugs. It's only your body, your organs and your immune system.
Remission of chronic lyme happened in the past only using abx, says dr. K, but chronic lyme patients infected after 2,000 are not as lucky as the ones infected before that.
Whether we got more nasty resistant cocktail of coinfections, whether borrelia got more resistant to abx, whether electrosmog and toxins increased, we don't know. It is just a fact.
Just see what Burrascano was saying long ago, when he created his abx protocol and what he says now.
So many physicians were swearing abx would have cured lyme 10 years ago. Just read past threads 8-10 years ago in this forum, that was all you needed! Few were using herbs, few were concentrating on detox, parasitism, heavy metals.
Virtually no one says that you will get cured with cocktails of abx today. Maintenance protocol of drugs for life is not a cure, nor remission.
Rebuild your body and trust your immune system to do the job no chemical can do! There is a reason why some never catch lyme even after infected tick bites.
If your immune system failed to fight borrelia, there must be one or a few reasons, and while taking your abx, I would try to fix the main problems there too!
Posts: 6200 | From Brussels | Registered: Oct 2007
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posted
Thank you CherylSue, TF and Brussels and others who support alternative treatment for this dastardley disease.
You all confirm what I have come to in my years of research on infections and you have stated the basis of my own approach to infection. And you all so eloquently stated exactly why I have decided not to choose antibiotics from the begining of my diagnosis in October.
My decision is not based on beliefs or wishful thinking, but from real world exerience of watching people die from infection, many hundreds of them, over a long career in the medical field, coupled with a passion for alternative medicine and natural healing and its practical applications to my life and that of my family.
I have been researching infectious disease and how to manage it alternatively for 7 years and was in the process of writing a book when I was struck with this Lyme. It certainly was a wake up call for me regarding what my work is lacking.
Although I was aware of Lyme I was avoiding the topic to a large degree, due to its complexity, only making casual mention of it and necessary precautions. No more. What a mistake that would have been. So its back to the drawing board for me, developing a full chapter on Lyme.
My chapter on Lyme will not be intended to tell someone how to treat Lyme but to consider the directions possible, their pitalls and plusses. Written as a lay person, which I consider myself to be even though I worked as a nurse for 27 years, the intent of the book is largely to address the nature of microbial disease and to help change the disease paradigm from the germ theory to the terrain theory... and to advance the education of families so that they can better approach infection when it comes their way.
If guys like you were not here now to help be through this it would be a very lonely trail indeed. The support on this thread has been tremendous.
One observation I make today regarding my own health is that I did't realize that I was so weak. I've fought off a number of chronic health issues over the years, each time, I thought, getting stronger. I rarely got sick. I felt invinceble... so much so that I thought I and my husband could take on starting a small ranch in our retirment years.
To be taken down by a lowly insect is a surprise. I don't exactly know just what to do to make myself stronger. It's the riddle that needs to be resolved.
Today's hunt is now on. Got to go find those hand weights burried in the storage building.
Posts: 803 | From USA | Registered: Oct 2013
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
For anyone who is not getting well, check into proto:
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
Did Dr. H really have lyme disease? he does not say anything about it in the book....
Posts: 47 | From new york | Registered: Jul 2013
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GretaM
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Member # 40917
posted
I agree with everything everyone has posted so far, from both sides/all sides.
This is why I enjoy LN so much-everyone's opinion is listened to and thought about, and welcome! It really is a great place to brainstorm and "think out loud"
My own opinion, is that antibiotics are useful to knock down infections to give the person a fighting chance at building up their immune system, and arranging their life and lifestyle to be gentler on their body.
I caught RMSF in November of last year, and every single body system went downhill drastically until doxycycline in April.
Those antibiotics, and my doc, who was the only doc who actually looked at my full body rash, saved my life.
Amazing how many docs I saw shied away from looking at my rash. It was hard to miss, obviously, haha, and they still wouldn't look at it!
Anyways, I am using oral and IV abx currently, tinctures, herbs and supplements, and am working on modifying my lifestyle somewhat to be gentler on my body.
When I feel that my body, and the infections are at equal strength, I will be stopping abx, and strictly focusing on herbs and therapies that help to keep my body strong.
The more I read, and the more people I speak to and meet, leads me to believe that lyme cannot ever be "cured" per say, but can be put into remission/hiding by a healthy immune system. That sounds great to me! Bartonella, my own personal demon, I am not so sure about. I do know that rifampin tamps down bartonella enough that I no longer consider dying on a daily basis.
Currently, I am working on building up the strength of my liver, kidneys and spleen, which I believe to be the powerhouses of the body.
And I agree with Carmen...it amazes me that we can be derailed by a tiny bugs such as ticks and fleas.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
I was a patient of Dr. H's and eco what others have said here.
His whole thing isn't that we need to be on Abx permanently. In fact...Dr. H tries to get you off of them as quickly as possible.
His point is that Abx alone won't do the job and you often need complimentary therapy (herbs, exercise, etc.)
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3139 | From Massachusetts | Registered: May 2010
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desertwind
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Member # 25256
posted
I too agree with and appreciate what everyone is sharing.
Finding a way to live in harmony with things in my body that I may not be able to change. This is my new "normal". Ebbs and flows that are not too drastic but serve as a reminder that my body, mind and spirit are a bit morphed from my original blueprint.
Dr. H.'s treatment has brought me closer to a place of healing then any doctor has because of the comprehensive approach. I also respect that he does not attribute every symptom to Lyme and rules out differentials.
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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Kudzuslipper
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Member # 31915
posted
This is truly one of the best threads here! I love this discussion. Everyone has made such good points on all sides. There are so many eloquently said things... it would take me pages to quote all of them. so let me just say thank you to Dessertwind, Greta, Carmen, Brussels and everyone for putting things into words...
The thing I want to be sure gets said (so I'll repeat it!~ LOL) for new people who may be coming to this thread and are new to the Lymenet and to Lyme in general...
TREAT THE BITE!!!! 4-8 weeks minimum (my own personal belief is with ABX,) It is still your best bet to knock out the disease. Most people who do treat early do not go on to have chronic problems... Don't wait for a test to come back... don't take no for an answer. It's your body and your future.
But I think those of us who find ourselves with chronic Lyme do need to face that abx are not the only answer. and we truly need to weigh quality of life with treatment options.
But if I knew I had a bite, If I knew what I did now, when I first got an odd intensely itchy rash (not really an EM) that wouldn't go away, followed by "fibromyalgia" I would have demanded a few months of abx... (of course, back then, they would have given me doxy, and the buggers would have turned to cysts and I'd be here anyway)
But I just want new people to realize that we are talking about chronic lyme in this thread and not a new bite!
Posts: 1728 | From USA | Registered: May 2011
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steve1906
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posted
I guess I should have wrote a book, I'm been saying this about antibiotics for years...
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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CD57
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Member # 11749
posted
Lymeinhell, if you come back, I would like to know how your super smart LLMD knew that your remaining sx were from the following:
They were from mineral deficiencies, parasites, candida, and a trashed GI tract from the abx themselves.
I feel that mine has overlooked EVERYTHING else and attributed everything that plagues me to the infections.
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canefan17
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Member # 22149
posted
Without ruffling feathers I would like to say I know plenty of people who've spent 1000's of dollars seeing Dr K & didn't get better (in a few cases got worse - kidney issues from metal detox).
That's not a knock on Dr K... but more an appreciation for how ridiculously deceptive and cunning these bacteria are & how difficult treatment can be for any patient and doctor. My guess is we understand less than 1% of how this whole "Lyme Disease" complex really works.
But in my own experience (I've done Rife, all the herbals, abxs, anti-parasitics, colonics, detoxing, juicing, saw 2 or 3 NDs (1 of whom comes from the Dr K tree), vitamins from here to Timbuktu... and nothing has helped me more than abxs. A few of the natural treatments/routes made me much worse and to this day 1 supplement I took continues to be the worst decision I've made my entire life. I wish I would've listened to TF when she said, "Follow your LLMD's advice, take the combo abxs, & get better." That would've saved me a lot of time, money, and stress from a couple of the debilitating natural treatments.
On top of abxs I have had success with Buhner's herbs & continue to take them... but I would not have recovered my brain function without abxs.
In fact I like the person I've become post-Lyme diagnosis. And I attribute most of that to finally treating a lifelong illness with abxs (I showed symptoms of Bart/Lyme as young as 12). I was always told growing up that my ADD, OCD, depression, & panic attacks were just "how I was wired."
After 6-9 months my first time through abx treatment with an LLMD (who ironically enough learned under Dr H) I, for the first time in my life, felt like a different person. I started learning and absorbing things at a really high rate. I matured beyond my years. I felt at peace, could sit & read books for hours, spoke better in public, had more confidence, & was more fun to be around.
I've talked to people who've beat Lyme with abxs (whether they remain in remission or do maintenance). My doctor is one of those. And he doesn't know squat about all this alternative medicine stuff (ignorance is bliss sometimes).
I've spoken with very few people who've beat it going the natural route only.
And on the subject of parasites... they exist in everyone (some parasites in our body actually benefit us in a few ways). But the times I've gone after intestinal parasites (did for 2 years) I only got worse. Really bad, really sick, & fast. My guess is I was 1) agitating them & 2) the ones I were killing were dumping tons of crap into my system - and yes I did all the necessary detox protocols while treating.
I'd be careful with treating parasites as those are the kind of boogers you don't want to piss off. Just feed em and keep em happy
All just my opinion.
Abxs + herbs = works for me
I'd rather be on a pulsing maintenance protocol of abxs for the rest of my life than to chase my own tail with every new alternative treatment available.
Edit: And for the record, I work 30-35 hour weeks in corporate America. I'm lucky I have a boss who understand my situation (as he allows flexibility in schedule).
I still plan on pursuing my dream of being a high school head basketball coach as well.
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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lyme in Putnam
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posted
Good 4 u canefan
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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GretaM
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posted
Kudzu-You are SO right!
This is an AWESOME thread for us chronics!
Everytime I read it, I love it more and more.
I wish I could hug all of you!
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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dbpei
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Member # 33574
posted
This is an excellent thread. There has been so much wisdom shed. Thanks to everyone for sharing your insight and stories.
I was on various ABX for a year. It was a miserable year for me, but taking herbs is no picnic either. Most of the ABX made me feel toxic. But I did start to improve by the time I decided to stop them.
I used Byron White herbs and then samento and banderol. Eventually I tried Buhner herbs. I felt better on the herbs than the ABX, but I do feel like I have regressed some unfortunately.
I am beginning to think I will probably never be rid of this monster. If I could only learn to live with the horrible tinnitus in my head and the buzzing/vibrating/crawling sensations...
I am fortunate that I am not in severe pain and I am not bed-ridden or paralyzed. But something has invaded my nervous system. I dream of having my quiet head again without these parasthesias.
I have been getting ozone and neural therapy for some infections in my jaw. I am seeing a dentist and naturopath who is out of state for this. It is a huge commitment and there are no guarantees that it will work.
I often wonder if the IV Picc line would have cured me or gotten me to a better place than I am today. I also question whether heavy metals, parasites, or other areas that need to be addressed could be keeping me from getting well.
The challenge is to find the right LLMD who can partner with me to take the right course of action... Still looking for that exceptional doc!
My lingering symptoms have all been from the neck up. So hard to describe to others as I look and seem so normal. How can I describe? Bubbly, fuzzy head? Constant noise in my brain similar to a short wave radio?
Yet, I can exercise almost daily, and am in the midst of moving from a home I have lived in for 20 years. I am traveling 500 miles weekly to get ozone treatment and work 1 or 2 days/week while packing and organizing for my move daily.
So I am trying to count my blessings but I will never give up trying to get that quality of life back that I cherished so much before this horrible disease hit me.
Posts: 2387 | From New England | Registered: Aug 2011
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TNT
Frequent Contributor (1K+ posts)
Member # 42349
posted
In regards to what canefan17 said about parasites...
I, too, have questioned that about treating parasites. I don't know if treating for them is always profitable for everyone.
What if the parasites were keeping things like the bad bacteria in check for years and then the bacteria get out of hand? Then we go and try to hit parasites and we upset the balance even further than before.
I remember reading a story of a man that was in bad shape from ulcerative colitis and he ate parasitic worms to get better!
Mainstream is using maggots for wound healing as well.
Sorry about the diversion.... I don't want to derail the good discussion... but I felt like canefan17 had a very valid point.
I guess that is where a good LLMD comes in- they know what needs to be addressed and what needs left alone.
Posts: 1308 | From Eastern USA | Registered: Oct 2013
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