Klinghardt

[Guest pandas16]

If you really research the things he has done, none of them are proven with any scientific studies...or accepted and recognized by teh FDA

 

Barely any of these doctors who practice ART take insurance. Most therapies that they use dont have clinical trials which prove their efficacy and is anyone on this forum really cured using them??

Edited November 16, 2011 by pandas16

[laure]

If you really research the things he has done, noen of them are proven with any scientific studies...

Barely any of these doctors who practice ART take insurance. Most therapies that they use dont have clinical trails which prove their efficacy and is anyone on this forum really cured using them??

 

Hi Pandas16,

I beg to differ. See my recent post on "Continued progress". Of course, time will tell... My doctor takes insurance, not sure about others - $20 copay is my cost.

[dcmom]

I pm'd you.

[SSS]

If alternative methods don't sit with you well, there is always the traditional blood, urine, stool tests ;-)

[Suzan]

For me personally, I am thankful for alternative treatment. Traditional medicine is helping but is not curing us. The combination of both I think are going to be what gets us past this. I totally agree that it requires some suspension of disbelief until you experience it and see it's benefits. I will continue to post about our experience as we move forward in the event that our experience helps.

 

Susan

 

Edit - forgot to mention, Klinghardt's work with KPU for lyme patients has been a critical treatment for my dd9. Without going out on a limb about this, she would not be improving as she is. My LLMD could not find the research papers she was hoping for regarding his work on this but she agreed to give it a trial. She wants to write a paper about dd9's response to KPU treatment.

Edited November 16, 2011 by Suzan

[SSS]

All I am saying is that on this journey, there will be things that will strike as right for your path, or not.

For example, your deep brain stimulation clinical trials is something I would never consider.

Some would never consider an IVIG because it is a blood product, and that is not something for them.

 

3 years ago I found a ND who did muscle testing, did it a few times, it led me to make a few changes for dd, but I did not continue it.

I have stacks upon stacks of various blood, urine and some stool tests that I like to see and study about what is happening in the body.

Our LLMD does not utilize ART, but does have a referral for Zyto testing, which we've done a few times, and frankly it did not tell me anything I did not already know,

but it did (and I believed it) gave top issues currently plaguing the body to be worked on-

but I need to pick and choose how to spend my money on resources, and can't continue this type of ongoing testing,

but do choose to spend money on blood testing to see how our livers, etc. are doing throughout treatment.

 

There are different avenues, and the factual studies may not back it all up to your liking,

so you research it thoroughly on your own, listen to others testimonies, advice perhaps of trusted practioners, and ultimately it is your own decision.

I went through this studying Shoemaker and mold- I am willing to do part of it, (CMS powder) but not the rest of the treatments because in my research I am not comfortable going further with off label drugs...

But I don't think he is a quack, and I believe he has taken some patients all the way to their recovery with it,

see what I am saying?

Edited November 16, 2011 by S & S

[lyme_mom]

If you really research the things he has done, none of them are proven with any scientific studies...or accepted and recognized by teh FDA

 

Barely any of these doctors who practice ART take insurance. Most therapies that they use dont have clinical trials which prove their efficacy and is anyone on this forum really cured using them??

Treating lyme and other tick borne diseases is clinical-educated guesswork. The blood testing is not reliable and symptoms are what lyme specialists use to guide their treatment. SO, having the ability to do muscle testing can give you more information that may help your treatment or give you info that you have not considered. I think of it as another hunch or another light in the darkness illuminating the path. I was not looking for proof it worked b/c I just wanted some more intuition that we were doing the right thing. It can be more reliable than blood testing too...For example, my son did not test sensitive to peanuts on the blood test but he tested sensitive on the muscle testing b/c the nuts probably have mold in them unlike the pure nut samples in the lab. At various times one or another medication was not "good" for him. For example his muscle testing said samento was good for him, as was doxy, but NOT both together. See what I mean? After doing enough muscle testing and being cured of my allergy to my dog in one visit with my chiropractor (using muscle testing and light therapy) I am convinced it really works. It can calm the body's response to the family's dog or to a lyme med that the patient may benefit from but be sensitive to. Also, it can't hurt so I was willing to give it try b/c we were really sick. I'd like to learn how to do it myself. You know that feeling you get when you don't want to eat something? That is your body telling you something. If you can be more in touch with that instinct you can learn a lot. Someone told me you can put the pills or substance under your arm and then try and then take your thumb and pointer finger and interlock them on both hands so that you have two loops hooked together (left and right hand pointer/thumbs looped together) and then pull a little. If your fingers come apart fast the substance is not good, if your hold is strong, it is good. If you do a while you apparently get the feel of it.I think you need to rub your hands together beforehand. I have forgotten the exact instructions. THere are many ways to test. Every practitioner I have been to uses muscle testing (except my llmd). I am convinced it offers another tool for healing. It works so well that we got a second dog and I was desensitized to it too and have no allergy symptoms. I was not about to take allergy meds for the rest of my life just to have a dog and there are tons of studies about the allergy drugs :-) but I didn't want them.

[dcmom]

I am glad everyone is doing well with their different approaches.

 

However, it is fair to say that all of this is "fringe" medical treatment. There aren't credible studies to back up what these docs are doing.

 

If it works for you- great! I have no doubt they can hit upon the right thing for some people.

 

However, when you or your child are sick, - it is easy to want to find answers, a cure. You have to be careful. I am VERY skeptical of docs who sell dvds, their own supplements, etc. But, I acknowledge that I am a skeptical person by nature.

 

I am a humanist, so I really like to see some science and some acceptance in the mainstream community. However, after dealing with pandas, I know that sometimes you just have to grapple through the dark and figure out what works, regardless of what is accepted at the moment.

 

I guess I am just trying to say- It is very important to have a dose of skepticism when dealing with docs. It is right that we question docs and methods on the forum- it will only help us learn, and make our kids better. Then make your own decisions, and continually re evaluate to be sure you are following a path that is working.

[MichaelTampa]

There aren't "credible studies" to back up what anyone is doing with lyme disease these days.

 

To me, though, Klinghardt is the only one researching new treatments. Everything that he has suggested, all of them probably quacky sounding, that I have bothered to try, have been enormously successful for me. They have got me to feeling like I am on the verge of being over this, although I am not yet. About to try another idea of his and very optimistic, although we will see. He knows about lyme from a very personal level, it has been a part of his life since childhood, and, besides trying to help people, I am sure this is why he works so hard at it.

 

He is the furthest thing there is from a quack, despite how nonconventional his methods may appear to many. He is all about results.

[MichaelTampa]

The short answer is lyme disease. The longer answer is that I had problems of indigestion and headaches and sore throats and anxiety/nervousness all my life, things were getting progressively worse, things got way worse during a near-drowning in 2006 where I ended up with PTSD, depression, insomnia, and throbbing foot/joint pain. I have always been sensitive to fluorescent lights and flashing lights and various chemicals and various smells and wireless signals and other EMF's. They caused a host of problems including indigestion and nightmares and diarrhea and migraines and severe fatigue and rage attacks including physical attacks (and many other things). As the biggest problems arrived following psychological trauma, much focus was on emotional healing with various talk and energy-related therapy and attempts with the very popular neuropsychiatric drug prozac, and very little progress was made. I eventually ran into a psychiatrist who noticed some of the physical "tics" that have been there on an occasional basis, but not dominated my life, and diagnosed me with Tourette's and I found this message board.

 

Eventually PANDAS swept over this board and I considered that for me, and it appeared to explain things better, particularly with the rage attacks. I was "diagnosed" with PANDAS by Dr. Kovacevic via phone consult. A trial of abx helped a little bit but not a way lot. I'm inclined to see that more as misdiagnosis, as that attacks really seem triggered more by neurological input rather than infection, but perhaps both play a role as the world can be hard to sort out that way.

 

Eventually I ran into lyme disease as an idea (thanks lyme mom), which has explained all of the symptoms much better than anything else, particularly when you add in bartonella and babesia. And what's more, many of the lyme treatments have had an enormous impact, which certainly gives that diagnosis more credibility. I had just a couple bands on the IGeneX western blot (41 positive one star and 39 IND, and that's it), but also a chronically low CD57, which I test periodically, and again it is still low as of a few days ago. My sensitivities are likely still there, but are very significantly reduced. I do still have chronic fatigue and pretty significant digestive issues, and perhaps those are my worst symptoms at this time.

[sptcmom]

If you really research the things he has done, none of them are proven with any scientific studies...or accepted and recognized by teh FDA

 

Barely any of these doctors who practice ART take insurance. Most therapies that they use dont have clinical trials which prove their efficacy and is anyone on this forum really cured using them??

 

No offense but it seems to me you're just trying to start a discussion and haven't really read up a whole lot on Dr Klinghardt. If you had you would see a simple Google search come up with quackwatch along with HUNDREDS of amazing testimonials from real people.

 

I don't find it necessary to explain Dr Klinghardt or holistic approach. When someone reaches the end of the road, they find him and his methodology and other similar practitioners who practice energy medicine. One needs a basic understanding of Quantum physics and the human nervous system physiology to understand most energy medicine concepts. There are lay term DVDs available but like I said, unless you are ready to believe you won't.

 

Every person will try their best to keep themselves and their children as healthy as they can. There are those who choose symptomatic relief with every cutting edge method out there IVIG, steroids, PEX etc.This method works very well with regular repetitions of these treatments and remission is often achieved.Its like organ transplant patients who survive and live a nice life on immune suppressing meds on a regular basis.

 

Then there are those who look for a cure and take the only road that can lead to a cure- bioenergetic methodology.Its a road more and more travelled as chronic degenerative disease is fast becoming such a global epidemic. The problem is the Epigenetics which is a discussion for another day....

 

There are books, there are studies and there are clinical trials. Do your research on your own- forums, website search in depth,- even Pubmed has hundreds even thousands of articles for the benefits of individual herbs for bacterial, viral, fungal etc issues.

But one has to understand that in many ways all this is pioneering work and the double blind studies are simply not feasible right now.

 

Your life, your choice, your research, your decisions.To each his own. I don't believe there is a right or a wrong. I wouldnt be swayed by what anyone says- steroids are the best thing, herbs are great, whatever. I would do my own research. You can't assume the other person has done all the research. You may have a better understanding of certain aspects that another doesnt. A mom who choses steroids may have a certain understanding of PANDAS and how she wants her children's future to be. You may do the same research and come to a different conclusion. Trust your own instincts.

yes, I've had PANDAS since age 4 and my son has it too since age 2.5. If you truly want to understand PANDAS even better than you already perhaps do now read/Google Dr. Aristo Vojdani's work on PANDAS- its amazing.

Edited November 16, 2011 by sptcmom

[tpotter]

Michel Tampa, what exactly do you suffer from if you dont mind me asking? do you have a diagnosis of PANDAS at all?

 

 

Since PANDAS/PITANDS (PANS) causes autoimmune neuropsych symptoms, I think it's safe to say that anyone who has infection triggered autoimmune neuropsych issues does have it (no matter what infection triggered it.)

[tpotter]

If you really research the things he has done, none of them are proven with any scientific studies...or accepted and recognized by teh FDA

 

Barely any of these doctors who practice ART take insurance. Most therapies that they use dont have clinical trials which prove their efficacy and is anyone on this forum really cured using them??

 

No offense but it seems to me you're just trying to start a discussion and haven't really read up a whole lot on Dr Klinghardt. If you had you would see a simple Google search come up with quackwatch along with HUNDREDS of amazing testimonials from real people.

 

I don't find it necessary to explain Dr Klinghardt or holistic approach. When someone reaches the end of the road, they find him and his methodology and other similar practitioners who practice energy medicine. One needs a basic understanding of Quantum physics and the human nervous system physiology to understand most energy medicine concepts. There are lay term DVDs available but like I said, unless you are ready to believe you won't.

 

Every person will try their best to keep themselves and their children as healthy as they can. There are those who choose symptomatic relief with every cutting edge method out there IVIG, steroids, PEX etc.This method works very well with regular repetitions of these treatments and remission is often achieved.Its like organ transplant patients who survive and live a nice life on immune suppressing meds on a regular basis.

 

Then there are those who look for a cure and take the only road that can lead to a cure- bioenergetic methodology.Its a road more and more travelled as chronic degenerative disease is fast becoming such a global epidemic. The problem is the Epigenetics which is a discussion for another day....

 

There are books, there are studies and there are clinical trials. Do your research on your own- forums, website search in depth,- even Pubmed has hundreds even thousands of articles for the benefits of individual herbs for bacterial, viral, fungal etc issues.

But one has to understand that in many ways all this is pioneering work and the double blind studies are simply not feasible right now.

 

Your life, your choice, your research, your decisions.To each his own. I don't believe there is a right or a wrong. I wouldnt be swayed by what anyone says- steroids are the best thing, herbs are great, whatever. I would do my own research. You can't assume the other person has done all the research. You may have a better understanding of certain aspects that another doesnt. A mom who choses steroids may have a certain understanding of PANDAS and how she wants her children's future to be. You may do the same research and come to a different conclusion. Trust your own instincts.

yes, I've had PANDAS since age 4 and my son has it too since age 2.5. If you truly want to understand PANDAS even better than you already perhaps do now read/Google Dr. Aristo Vojdani's work on PANDAS- its amazing.

 

Very nice response.

[dcmom]

Quote:

Every person will try their best to keep themselves and their children as healthy as they can. There are those who choose symptomatic relief with every cutting edge method out there IVIG, steroids, PEX etc.This method works very well with regular repetitions of these treatments and remission is often achieved.Its like organ transplant patients who survive and live a nice life on immune suppressing meds on a regular basis.

 

Then there are those who look for a cure and take the only road that can lead to a cure- bioenergetic methodology.Its a road more and more travelled as chronic degenerative disease is fast becoming such a global epidemic. The problem is the Epigenetics which is a discussion for another day....

 

 

 

 

I take great offense to this post.

 

I am happy for anyone who finds answers for their child- but lets at least be honest, and admit when we are dealing with completely unproven science practiced by a handful of doctors. You can in no way credibly say that you are achieving a cure with "energy medicine" and parents using traditional medicine are using a band aid. Your statement is at best in poor taste, but more likely unbelievably condescending and irresponsible.

 

I have lots of thoughts and beliefs, yet I am sure to temper them, and speak reasonably and responsibly (keeping in mind there are new parents and some pandas patients on the forum). I consider you a friend, and in that spirit, I hope that I can call this out without you taking it as a personal attack. We have all been on a long journey and I have no interest in adding to anyone's pain. But more than anything I believe in honesty, and rational thinking.

[sptcmom]

Quote:

Every person will try their best to keep themselves and their children as healthy as they can. There are those who choose symptomatic relief with every cutting edge method out there IVIG, steroids, PEX etc.This method works very well with regular repetitions of these treatments and remission is often achieved.Its like organ transplant patients who survive and live a nice life on immune suppressing meds on a regular basis.

 

Then there are those who look for a cure and take the only road that can lead to a cure- bioenergetic methodology.Its a road more and more travelled as chronic degenerative disease is fast becoming such a global epidemic. The problem is the Epigenetics which is a discussion for another day....

 

 

 

 

I take great offense to this post.

 

I am happy for anyone who finds answers for their child- but lets at least be honest, and admit when we are dealing with completely unproven science practiced by a handful of doctors. You can in no way credibly say that you are achieving a cure with "energy medicine" and parents using traditional medicine are using a band aid. Your statement is at best in poor taste, but more likely unbelievably condescending and irresponsible.

 

I have lots of thoughts and beliefs, yet I am sure to temper them, and speak reasonably and responsibly (keeping in mind there are new parents and some pandas patients on the forum). I consider you a friend, and in that spirit, I hope that I can call this out without you taking it as a personal attack. We have all been on a long journey and I have no interest in adding to anyone's pain. But more than anything I believe in honesty, and rational thinking.

 

 

I do look upon you as a knowledgeable mom who helped me with one important aspect of PANDAS last year. But its really sad to see you still in angst and hurling insults at fellow parents. Why do you feel the need to repeatedly defend your very conventional position? Perhaps you are trying to convince yourself you've made the right choices for your girls? Im fully convinced you have. When I spoke to you, you sounded very well informed and researched on steroids, abx and pex etc. I was impressed.I wish you could move on to a happier place where you don't have to read whats not even there in other people's posts just trying to express an opinion.

NOWHERE in my post have I mentioned the word "band aid" or even implied. I have been fair and cited the respective merits of both approaches form my experiences.As I've told you before I am entitled to an opinion without knocking heads with self appointed posting police. You don't need to read my post if it offends you.You know my ID so don't pay me any mind.

 

On the other hand one has to realize this is a multicultural society we live in. PANDAS, Lyme and Co is not segregated to one culture. We have millions of people from India, Pakistan, China, Eastern Europe, Middle East, Mexico, South America etc who live in the USA. Im in NJ and thats a lot of what I see in my practice too. All ethnic parents have alternative medicine questions and want to do a combo approach to PANDAS, Lyme, Autism etc. For Autism the DAN! protocol was ridiculed in the beginning too and look how many thousand even millions the mostly holistic DAN! protocol has helped.Ancient Chinese medicine, Ayurvedic medicine from India, Unani from Pakistan and Russia, holistic approahes from Israel etc have been around for centuries, proven and tested. In my experience I find people with cultural roots to these and other countries ,they have a much deeper understanding of alternative medicine, and I KNOW they/we read these forums and Im sure are glad to read all the holistic info many moms are kind enough to share.

50% of people I meet at the tens of specialists I'm seeing around the world are infact doing ONLY holistic for their kids and themselves. Even kids as little as 6 months old or less. Im not swayed or offended by their approach. I value their opinion and choose to stick with mine- abx and holistic approach. Atleast I know I've learned all aspects of treating these horrible diseases affecting our children in every way I can.

When you so vehemently insult an approach that so many parents take, you're not only insulting me but all the parents who have chosen this path.

Just because its not published in JAMA or any other American peer reviewed journal, it doesnt mean its nonsense. Medical journals from other countries and alternative medicine journals from this and other countries are ABOUND with scientific research on alternative approaches.Like I said, you need to do real broad spectrum research.There are FULLY licensed and accredited alternative medical schools in the US and ofcourse many abroad. The sooner we realize we need a global and open minded approach to heal our kids, the sooner, I feel, will our kids heal.

 

Most people who know me on these forums know I am a combo approach type of person. I use several conventional methods and several Holistic. Its works for MY family and patients. Doesn't mean Im trying to convert anybody. Im SURE most poople, new parents and all want to read as many experiences as they can before they make a life altering treatment choice for themselves or their little ones.

 

And yes, Thanks Trudy, I appreciate it! I havent had a chance to PM but will. Going to Germany for a couple procedures and will keep you posted once I return.

Edited November 17, 2011 by sptcmom