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Anyone tried Dr Zhang's protocal?


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I'd like to share my experience with Dr Zhang's protocol, and to see if anyone else has used it and what's the outcome. My DS8 has been on Dr Zhang's protoc0l for a month. It's chinese herbs extract in capsules. On the fifth day of treatment, DS started to have fever of 102 for 2 days, then I lower the dose to 1/2, and she continued to have fever for another 2 days, with headache, fatigue, muscle pain etc.

 

I put her on full dose again once her fever was gone ( total 4 days, later I learned from LLMD that I should have not used tylenol unless it's 104, she said it's good to let it out, tylenol push bad stuff back in body), 10 days after that, her tics has been coming back with vingence, new tics and more sevier, and very hyper...it's been 10 days with tics so bad, and I don't know when her tics will stop. Called Dr Zhang, he said it's the herx, usually 1-2 wks of reaction. Part of me is glad that she is having herx, but I am also concerned that some kind of toxin is hurting her CNS, might cause damage.

 

I mainly tried to keep her bowel movement smooth by giving her prune juice and emergen-c 1000-2000/day (it works), and take epsom/baking soda bath or clay bath every other day, to help her herxs. Any other suggestions that can help her? She did not complain any discomfort though during the whole tic episode, I don't know if she is aware of it. and she seems to have lots of energy going school and play outdoors.

 

Dr Zhang's clinic is located in NYC, we never met him, only consult on phone. Dr Andrew Weils said this Drs protocol is the best method he knows for treating lyme.

 

His website: http://zhangclinicnyc.com/, I ordered his book 'lyme disease and moder chinese medicine' at amazon.com, which is great for me to understand his method. Ever since I learned my DS might have lyme/co-infection, I bought 10 books at amazon and studied day and night on the web to try to find the best way to proceed.

 

The reason I chose this are as follows, and I hope I am right and my DS gets well;

(1). LLMD wants to put her on 3 antibiotics for 2 years, yet not 100% sure if she has lyme/co-infection, since with blood test you can never be 100%

sure, Igenex did show many positive bands, plus antibody to Erhlichiosis(both kinds), mycoplasma, HHV6, not Babesia nor Bart. I read that Erhlichiosis is known to cause false positive on lyme bands. So basicly we don't know what exactly we have, or if the infection is current. She has to try different antibiotics to figure out what works. But, Zhangs herbs have wide anti-micobial spectrum. that means you don't have to what you bacteria you have, it covers. He use specific herb for Babesia since it's parasites. (Energetic testing through 2 Drs only find erhlichiosis)

 

(2). Not only just kill the germs, like antibiotics, more importantly, make your immune normal again to clear the residual lyme/co-infec. he said lyme/co-infec can be eradicated, not just germ load reduction. He has gotten many well after they failed antibiotic or keep relapsing after stopping antibiotics. So to me, if he can get people failed antibiotics well, then why do I even go antibiotics in the first place.

 

(3). Side effects. His is with little to none toxicity, expesially for children, his youngest patient was 1 yr old.

 

So that's my thoughts. Am I too risky to rely on one protocol? When DS going through all these tics..I sometimes have a little doubt about am I doing the right thing? But then I don't know what's my alternatives. I have been reading in this forum for a while, and I feel for everyone with a child sick. and it seems antibiotics is a hard way to go through..I urge you Moms out there when your child is not doing well with antibiotics, pleae google 'Zhang's clinic' to find out more about this.

 

I have a question on blood testing. Now that we are on treatment for a month, and have herx, when would be a good time to do another blood test again? to see if the test come out positive for Babesia or Bart. I have spent too much money with testing already ( Igenex, and Advance culture test), want to stick with what insure will cover. Does LabCorp test Babesia? or any other mainstream lab you can suggest? How can I tell it's time to stop treatment by looking at blood/lab test? etc.

 

P.S. you can ask for a 15 free consultation with Dr Zhang. He is very nice. If you want you can pay $150 for formal consultation and become his patient, and he is very accesable via phone afterward for free, although he does not have lots of time for you but he is there for you. I was freaking out with DS herx, and called him 3 times in last month, and he is right there to talked to me 5-10min each time which is nice to ease my

mind.

 

Any advise is greatly appreciated.

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I'd like to share my experience with Dr Zhang's protocol, and to see if anyone else has used it and what's the outcome. My DS8 has been on Dr Zhang's protoc0l for a month. It's chinese herbs extract in capsules. On the fifth day of treatment, DS started to have fever of 102 for 2 days, then I lower the dose to 1/2, and she continued to have fever for another 2 days, with headache, fatigue, muscle pain etc.

 

I put her on full dose again once her fever was gone ( total 4 days, later I learned from LLMD that I should have not used tylenol unless it's 104, she said it's good to let it out, tylenol push bad stuff back in body), 10 days after that, her tics has been coming back with vingence, new tics and more sevier, and very hyper...it's been 10 days with tics so bad, and I don't know when her tics will stop. Called Dr Zhang, he said it's the herx, usually 1-2 wks of reaction. Part of me is glad that she is having herx, but I am also concerned that some kind of toxin is hurting her CNS, might cause damage.

 

I mainly tried to keep her bowel movement smooth by giving her prune juice and emergen-c 1000-2000/day (it works), and take epsom/baking soda bath or clay bath every other day, to help her herxs. Any other suggestions that can help her? She did not complain any discomfort though during the whole tic episode, I don't know if she is aware of it. and she seems to have lots of energy going school and play outdoors.

 

Dr Zhang's clinic is located in NYC, we never met him, only consult on phone. Dr Andrew Weils said this Drs protocol is the best method he knows for treating lyme.

 

His website: http://zhangclinicnyc.com/, I ordered his book 'lyme disease and moder chinese medicine' at amazon.com, which is great for me to understand his method. Ever since I learned my DS might have lyme/co-infection, I bought 10 books at amazon and studied day and night on the web to try to find the best way to proceed.

 

The reason I chose this are as follows, and I hope I am right and my DS gets well;

(1). LLMD wants to put her on 3 antibiotics for 2 years, yet not 100% sure if she has lyme/co-infection, since with blood test you can never be 100%

sure, Igenex did show many positive bands, plus antibody to Erhlichiosis(both kinds), mycoplasma, HHV6, not Babesia nor Bart. I read that Erhlichiosis is known to cause false positive on lyme bands. So basicly we don't know what exactly we have, or if the infection is current. She has to try different antibiotics to figure out what works. But, Zhangs herbs have wide anti-micobial spectrum. that means you don't have to what you bacteria you have, it covers. He use specific herb for Babesia since it's parasites. (Energetic testing through 2 Drs only find erhlichiosis)

 

(2). Not only just kill the germs, like antibiotics, more importantly, make your immune normal again to clear the residual lyme/co-infec. he said lyme/co-infec can be eradicated, not just germ load reduction. He has gotten many well after they failed antibiotic or keep relapsing after stopping antibiotics. So to me, if he can get people failed antibiotics well, then why do I even go antibiotics in the first place.

 

(3). Side effects. His is with little to none toxicity, expesially for children, his youngest patient was 1 yr old.

 

So that's my thoughts. Am I too risky to rely on one protocol? When DS going through all these tics..I sometimes have a little doubt about am I doing the right thing? But then I don't know what's my alternatives. I have been reading in this forum for a while, and I feel for everyone with a child sick. and it seems antibiotics is a hard way to go through..I urge you Moms out there when your child is not doing well with antibiotics, pleae google 'Zhang's clinic' to find out more about this.

 

I have a question on blood testing. Now that we are on treatment for a month, and have herx, when would be a good time to do another blood test again? to see if the test come out positive for Babesia or Bart. I have spent too much money with testing already ( Igenex, and Advance culture test), want to stick with what insure will cover. Does LabCorp test Babesia? or any other mainstream lab you can suggest? How can I tell it's time to stop treatment by looking at blood/lab test? etc.

 

P.S. you can ask for a 15 free consultation with Dr Zhang. He is very nice. If you want you can pay $150 for formal consultation and become his patient, and he is very accesable via phone afterward for free, although he does not have lots of time for you but he is there for you. I was freaking out with DS herx, and called him 3 times in last month, and he is right there to talked to me 5-10min each time which is nice to ease my

mind.

 

Any advise is greatly appreciated.

First you need to understand that Zhang's protocol is not Traditional Chinese Medicine. What he has done is make pharmaceutical grade products from herbs. Now many standard western drugs begin as herbs first and then they are often synthesized. Rifampin is a perfect example as if was first found in the bark of pine trees in France. So you have to understand you are giving your child pharmaceutical grade high strength drugs. Regardless of what Dr. Weil says these medicines have to be treated like others. I do not think major herxing is good. I think it is a stressor on the body and in a child it is even more dangerous. I also would be very careful about "detox". There is a lot of folklore floating around the Lyme community about detox and most of it has no science backing it. Clay is a perfect example. Clays can contain toxins of their own. Epsom salts cannot remove toxins from the body. If you were able to absorb magnesium sulfate through the skin just what happens afterward with all the Mag salt in the blood stream? How does it get out. Some people say that epsom salts "pulls the toxins" out of the body. Please someone show me one study on the physiology of epsom salts clearing toxins.

I have had some very major herx events just from treating bartonella and I think one is worse off afterwards. It can take me 5 days to clear from these events. The body/liver gets overloaded with toxins and inflammation results.

As for blood testing I think it is contraindicated when one is being treated. The only true test is to clean of all drugs for a few weeks and then be retested. For myself I have set a standard that if I can get well and stay well for 3 months I will come off the meds and then get retested for bart at Galaxy Diagnostics. Galaxy uses PCR/DAN amplification with a 99% accuracy rate. They do not uses titers or blood smears: they are looking for active DNA in the blood. You test + and you have bart.

I am trying a protocol right know that is a mixture of true TCM + western antibiotics. I am taking azithromycin + TCM herbal formula that I boil and drink a couple of times a day. I started this protocol because I was having trouble with massive herx events with multiple antibiotics and also because of GI pain from said antibiotics. I take 80-100 billion units of various probiotics including fermented kefir coconut water. The original protocol was posted on Goodbye Lyme newsletter and can be viewed at

http://goodbyelyme.com/free-articles/coinfections/busting-bartonella

I have an Oriental Medicine Doctor who is very well versed in Chinese herbs. SHe has written a textbook on herbs and has a true TCM practice which includes a full Chinese herbal pharmacy. She reviewed this protocol and said it made sense to her. Obviously she had to see me so she could tailor the formula specifically to me. The first go around I had major herxing 3 days in a row even though we were going slow. So I stopped and she made a new formula. Even though I had major herxing I recovered much quicker from the herbs than when I herxed on just antibiotics. With the new formula I have slowly worked my way up in dosage over the past 2 weeks. When I began to see an increase in herx symptoms I took 2 days off the herbs but continue on the axithro. My symptoms calmed down and I restarted today. Normally I would also have been seeing her during this time for acupuncture but she has been out of the country. So far I can say I improved considerably. Now I should also say that previous to this I thought the antibiotics were also helping but it was like riding a bucking bronco. I am able to walk again for exercise. I am walking 3 days a week and am up to a mile. I am being careful not to push myself. I have significantly less pain in my muscles and bones even after working and walking. I was going to wait on presenting this information as I have only been on this 1 month. But your post prompted me to go ahead and write about. I think this can only be done with an OMD who practices TCM. The guy who wrote this is Greg Lee at Two Frogs Healing Center.

The other thing I focus on is reducing inflammation. I believe detox is done by the liver and the best we can do is to improve our health by eating correctly and maybe using a few supplements to reduce inflammation and promote healing. Both bartonella and lyme produce the major inflammatory transcription factor called NF-kB. NF-kB can be measured in the blood stream. It causes vascular inflammation among other things. So I take a few very high quality antioxidant "inhibitors" of NF-kB. I have no idea if I am actually lowering NF-kB but I know what are good inhibitors and what are inducers. For more on NF-kB see http://www.bu.edu/nf-kb/physiological-mediators/inhibitors/

Red.

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There are different protocols, and I try to stay open minded.

What works for one, might not work for another.

Like my daughter and I.

Our first LLMD, we did a lot of alternative type things, and pulsing.

I ended up switching Dr.s, as I was looking for more of a Burrascano type Lyme and co-infection treatment plan for myself.

That type of treatment is not working out for my daughter-

and, a lot of our children's circumstances can be varied-

mine does excellent at school, has no body pains, but we have other very trying issues.

We've peeled the onion with her for years.

About to try the Cowden protocol for her- despite if others may nay say it, it is where we are at-

 

I wish you the best with Zhang, and would love to hear treatment updates-

Hang in there--

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Clay is a perfect example. Clays can contain toxins of their own.

 

I believe detox is done by the liver and the best we can do is to improve our health by eating correctly and maybe using a few supplements to reduce inflammation and promote healing.

 

Red,

I have no scientific papers on epsom salt baths, but I do know that sweating and opening skin pores can be an effect detox mechanism in general. But you say clay can contain toxins. Do you have any papers to support this? I don't use clay so I have no dog in the race but in one breath you rail against folklore but in the next breath make a similar claim against clay. I was wondering if you had anything you could share on this as it would be a really important piece of information.

 

As for detox, I feel you can do much more than just eating correctly and keeping inflammation in check. You can check your methylation status, which greatly effects many aspects of health, including your transsulfuration pathway, which is your body's main detox pathway. You can supplement with IV glutathione or precusors to glutathione and use other anti-oxidants such as vitamin C, licopene, resveratrol... you can use supplements such as milk thistle which help clear/activate liver metabolic pathways, you can make sure your bowels are moving quickly enough to clear toxins rapidly to prevent them from being reabsorbed into the blood stream, you can flush the kidneys frequently, you can check for heavy metals toxicity...I think it goes way beyond diet and anti-inflammatories. At least, that's been my personal experience.

 

I'm glad you've finally found a protocol that works for you after such a long battle. But I agree with S&S - what works for one doesn't always work for another. I've spent lots of money on herbs and tinctures that haven't done squat for my kids but seem to work wonders for others. It is, unfortunately, a matter of finding what works for you, with your individual genetic makeup, environment, diet, lifestyle, unique combination of infections, and practicality of a certain protocol for a child. Kids often won't suck it up and take a nasty tincture or be able to tell you how they feel after taking something. So I'm not comfortable suggesting to jjhealing that the path she's on is right or wrong, safe or dangerous, effective or ineffective.

 

JJHealing - yes, please let us know how things go. Best of luck with the protocol.

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Clay is a perfect example. Clays can contain toxins of their own.

 

I believe detox is done by the liver and the best we can do is to improve our health by eating correctly and maybe using a few supplements to reduce inflammation and promote healing.

 

Red,

I have no scientific papers on epsom salt baths, but I do know that sweating and opening skin pores can be an effect detox mechanism in general. But you say clay can contain toxins. Do you have any papers to support this? I don't use clay so I have no dog in the race but in one breath you rail against folklore but in the next breath make a similar claim against clay. I was wondering if you had anything you could share on this as it would be a really important piece of information.

 

As for detox, I feel you can do much more than just eating correctly and keeping inflammation in check. You can check your methylation status, which greatly effects many aspects of health, including your transsulfuration pathway, which is your body's main detox pathway. You can supplement with IV glutathione or precusors to glutathione and use other anti-oxidants such as vitamin C, licopene, resveratrol... you can use supplements such as milk thistle which help clear/activate liver metabolic pathways, you can make sure your bowels are moving quickly enough to clear toxins rapidly to prevent them from being reabsorbed into the blood stream, you can flush the kidneys frequently, you can check for heavy metals toxicity...I think it goes way beyond diet and anti-inflammatories. At least, that's been my personal experience.

 

I'm glad you've finally found a protocol that works for you after such a long battle. But I agree with S&S - what works for one doesn't always work for another. I've spent lots of money on herbs and tinctures that haven't done squat for my kids but seem to work wonders for others. It is, unfortunately, a matter of finding what works for you, with your individual genetic makeup, environment, diet, lifestyle, unique combination of infections, and practicality of a certain protocol for a child. Kids often won't suck it up and take a nasty tincture or be able to tell you how they feel after taking something. So I'm not comfortable suggesting to jjhealing that the path she's on is right or wrong, safe or dangerous, effective or ineffective.

 

JJHealing - yes, please let us know how things go. Best of luck with the protocol.

To answer your question about clays here is a full article Bentonite, Bandaids, and Borborygmi

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2895274/?tool=pubmed

All the anti-oxidants your mentioned promote inhibition of NF-kB and other inflammatory proteins. I take some of these anti-oxidants specifically to reduce inflammation. They have nothing to do with detox.

Please explain what you mean about "methylation status and transsulfuration pathway". These are incredibly complex biological mechanisms. Do you understand methylation and the transsulfration pathway? And do you understand how the supplements/chemicals you are taking might affect these biochemical processes in the body and the disease(s) you are trying to kill? I have read numerous articles about the above and this is incredibly complex and scientific.

Phagocytosis is the mechanism whereby the body is cleaning itself. The best we can do to promote "detox" with supplementation is to reduce inflammation and promote phagocytosis. Basically setting up the body to heal.

I have no idea yet if what I am doing is an effective protocol. One month of felling better is way to soon to say I have found a path to healing. I fully expect to probably have to go back on multiple antibiotics again if I am to achieve a full kill of bartonella. What I am trying to accomplish right now it get body strong enough and get more die off of the bacteria so when I have to use the heavy hitters I hopefully will not be as sick. I have two very well trained and experience clinicians, one an OMD who practices TCM and the other a western trained MD who is LLMD guiding me through this process.

I find it scary at best and horrifying at worst to put in my body supplements and chemicals that are touted on the multitude of websites claiming "cures" to Lyme/co-infections, and other bacteria. All this is promoted often with little if any scientific evidence. I never said to anybody that the pathway they are taking is wrong. What I have promoted is not playing with supplements and other products without a firm scientific understanding how these products affect the body. Many people are self treating or seeing clinicians that do not have the science and medical training to treat these very severe illnesses. How can any chiropractor claim to have the medical training to diagnose and treat the complex diseases many of us suffer from is beyond my comprehension. And it is not just chiropractors getting in on the game. I fully understand how frustrated we all are in our journeys through this mind field but turning to products, treatment plans and protocols that are promoted on websites by people selling their wares is not my idea of medicine. I am and have been an allied health care provider in medicine for 37 years. I bring a great deal of skepticism to both western and alternative medicine. I believe that only 10-20% of traditional western medicine is any good and I find the alternative medicine field no better. That does not leave much for us to choose from.

Addendum: here is a perfect example of what I am talking about. From the "Autism Coach" Subject "The Glutathione/Sulfation/Methylation Pathway" http://www.autismcoach.com/Articles.asp?ID=252

Great appearing article about a doctor who studied 20 children. Said doctor did blood samples and then supplemented these 20 children with products being sold and touted on this website. According to this website the blood work in these autistic children improved with the supplementation. But nothing was said if the symptoms of the children improved. Additionally this was a cohort of only 20 people. In science that is just a starting point. You then move on to a much larger cohort. And then you state the results of the supplements: i.e. did you actually improve the status of your patients. From the "Autism Coach" website "Autism Coach offers, supplements, dietary products, and software to help individuals of all ages within the autism spectrum reach their maximum potential."

So are you proposing that I am to assume that my Glutathione/Sulfation/Methylation Pathway needs supplementation just because I have bartonella? Should I just start taking this stuff because this doctor studied 20 autistic children? Not only am I an adult but I am not autistic. If I was do to this protocol I would at the very least need to have my blood levels checked first: wouldn't I?

Red

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Thank you for the article - very informative. While it does discuss risks, it also acknowledges several healing benefits. So I suppose you can take away several things from this, depending on your inclinations. It was helpful, so thanks for sharing it.

 

You say that the supplements I mention have nothing to do with detox. Perhaps we're using the term in different ways. I view detox as everything from the point where cysteine converts to glutathione, thru the filtering processes of the kidneys and liver and to the point of excretion. Perhaps that's not the medically correct view, but that's how I'm using it.

 

I don't have 37 years in allied health care - or any years for that matter - and I hope I don't come across as offering medical advice or like I'm trying to sound like any sort of expert. I've studied methylation and transsulfuration to the best of my abilities and feel I understand the basics fairly well but have found it next to impossible to find a practitioner who has a better understanding than I do, even tho my understanding is far from complete. I can find docs and researchers who may know a great deal about methylation or the immune system or neurology or psychiatry or cognition or....any other facet of my child's world. But I've yet to find anyone who gets the whole picture. Some autism specialists come close, but my kids aren't autistic and most autism specialists don't know lyme. And even those rare clinicians who do touch many facets are still learning - not only from peers at conferences but from parents who live and learn the hard way. Pediatrics adds a whole other layer to the problem most lyme patients face - and those layers are already pretty complex.

 

So I have many gaps in my medical knowledge. And I would give what's left of my retirement account to any doctor who could pull it all together, see my kids from every facet and take over as case manager. But that person may not exist and I can't let my kids - and the entire family - suffer in the interim. So I spend time on forums sharing information, then spend countless hours sifting thru legitimate and illegitimate research, biases, theories and claims. I limp along as best I can and ultimately pick a doc or two to help along the way. Just as there's a great deal of disagreement among doctors, there will be differences of opinion on forums, with some choosing to try things another parent wouldn't be comfortable with.

 

When I share my experiences here, it isn't with the single goal of fighting lyme. My kids have much more going on than a single infection. They have, at various times, gone stark raving mad, hid under coffee tables, curled up into balls in tears, unreachable, lost all social skills, lost academic skills they had a month earlier, and experienced neurological challenges you don't see discussed on most lyme forums. Some of our kids do present with symptoms generally associated with autism. They have also had awesomely normal times that I cherish. This forum represents a unique subset of lyme patients and parents. As such, we end up touching on a wide spectrum of ideas and throwing a lot of spaghetti at the walls. So yes, I try my best to appreciate what each supplement does not just in terms of chronic infection but especially in terms of neurotransmitters and physical development.

 

Do I make mistakes? Absolutely. I think for the most part, our kids get a LOT of blood draws and do check for many things before we turn them into guinea pigs. But go search on my mea culpa posts about my screw ups. Look in my shoebox of shame - filled with bottles of things that didn't pan out, despite what a blood test suggested. Do I read about LLMDs and Pandas docs giving advice that I know to be incomplete as well? Yes. This forum sometimes serves as a feedback loop to the handful of doctors some of us end up working with. We toss ideas around, take turns digging up research, doing doctor-guided trials of various things - then talk about what worked, what didn't and then we share thoughts at our next appointments. All of us realize (I hope) that we take the info on this forum as ideas, not as strict advice or directives. For the most part, we're just moms (and a few dads) doing the best we can.

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Thank you for the article - very informative. While it does discuss risks, it also acknowledges several healing benefits. So I suppose you can take away several things from this, depending on your inclinations. It was helpful, so thanks for sharing it.

 

You say that the supplements I mention have nothing to do with detox. Perhaps we're using the term in different ways. I view detox as everything from the point where cysteine converts to glutathione, thru the filtering processes of the kidneys and liver and to the point of excretion. Perhaps that's not the medically correct view, but that's how I'm using it.

 

I don't have 37 years in allied health care - or any years for that matter - and I hope I don't come across as offering medical advice or like I'm trying to sound like any sort of expert. I've studied methylation and transsulfuration to the best of my abilities and feel I understand the basics fairly well but have found it next to impossible to find a practitioner who has a better understanding than I do, even tho my understanding is far from complete. I can find docs and researchers who may know a great deal about methylation or the immune system or neurology or psychiatry or cognition or....any other facet of my child's world. But I've yet to find anyone who gets the whole picture. Some autism specialists come close, but my kids aren't autistic and most autism specialists don't know lyme. And even those rare clinicians who do touch many facets are still learning - not only from peers at conferences but from parents who live and learn the hard way. Pediatrics adds a whole other layer to the problem most lyme patients face - and those layers are already pretty complex.

 

So I have many gaps in my medical knowledge. And I would give what's left of my retirement account to any doctor who could pull it all together, see my kids from every facet and take over as case manager. But that person may not exist and I can't let my kids - and the entire family - suffer in the interim. So I spend time on forums sharing information, then spend countless hours sifting thru legitimate and illegitimate research, biases, theories and claims. I limp along as best I can and ultimately pick a doc or two to help along the way. Just as there's a great deal of disagreement among doctors, there will be differences of opinion on forums, with some choosing to try things another parent wouldn't be comfortable with.

 

When I share my experiences here, it isn't with the single goal of fighting lyme. My kids have much more going on than a single infection. They have, at various times, gone stark raving mad, hid under coffee tables, curled up into balls in tears, unreachable, lost all social skills, lost academic skills they had a month earlier, and experienced neurological challenges you don't see discussed on most lyme forums. Some of our kids do present with symptoms generally associated with autism. They have also had awesomely normal times that I cherish. This forum represents a unique subset of lyme patients and parents. As such, we end up touching on a wide spectrum of ideas and throwing a lot of spaghetti at the walls. So yes, I try my best to appreciate what each supplement does not just in terms of chronic infection but especially in terms of neurotransmitters and physical development.

 

Do I make mistakes? Absolutely. I think for the most part, our kids get a LOT of blood draws and do check for many things before we turn them into guinea pigs. But go search on my mea culpa posts about my screw ups. Look in my shoebox of shame - filled with bottles of things that didn't pan out, despite what a blood test suggested. Do I read about LLMDs and Pandas docs giving advice that I know to be incomplete as well? Yes. This forum sometimes serves as a feedback loop to the handful of doctors some of us end up working with. We toss ideas around, take turns digging up research, doing doctor-guided trials of various things - then talk about what worked, what didn't and then we share thoughts at our next appointments. All of us realize (I hope) that we take the info on this forum as ideas, not as strict advice or directives. For the most part, we're just moms (and a few dads) doing the best we can.

 

 

Nicely said LLM! :D

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I do believe it is possible to gain expertise on complex processes through intensive study. In medicine, non MD's even train MD's. At the ripe age of 26 or so I was runnng training sessions for neurologists on equipment I was selling, of course along with other MD's. I do agree that a degree of skepticism is extremely important. Unfortunately as LLM writes we have not been able to find practicioners who are alone capable/willing/knowledgable enough to cure our children. I would personally love to return to my "day job" and never lurk on any of these boards again, but I simply can't until my daughetr is better. I am hopeful that day will come and grateful to all who are willing to share their knowledge, experience and ideas with the common goal of healing. I find all contributions valuable, even if they are contributions that I am skeptical about, it's important to learn what not to do along with what to try.

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Thank you all for your replies and your informative discussions! I am trying to learn everything I can to help, So far we have visited more than a dozen of Drs, wasted/aganized over more than a year of time, not one remotely suggested to test for lyme. When I asked about it, the answer would be 'not possible'. Finally I found an ILADS got her tested...I am sick of these Drs..and am still upset that I did not found out about it sooner..It's been over a year since her onset (fever/vomit/pain), wasted early treatment oppotunity. I will never trust any one Dr again. The point is, To protect your family, YOU have to be the family primary care Dr, YOU have to be the Nutritionist, You have to be the chef...etc. It's exhusting to just get clean food on the table..

 

Finally DD is doing better last 2 days (Monday and Tuesday) with her tics, after herx (worse tics) for ab out 2 weeks. Hoping that we are over the hump with the herx. She does feel tired in the morning when wake up, a extra 10-15 min to get up. I was thrilled to see her actually pooped twice yesterday, which is rare..what i did differently was I bought organic whole chia seeds on Sunday (recommanded by Dr trained by klinghardt), socked about 2 tbsp in a glass of coconut milk (or water), then mixed it with berries made smooth, divided by two. had her drinking in morning and afternoon. Plus I added liver life (believe from biopure) into the mix...So I am sticking with the formula. It would be great if I can keep her bowel moving using these.

 

I am interested to know what kind of diet is good for us...I am looking for a good lunchbox (thinking about Planetbox, expensive), and try to get more variaty into her diet. Any suggeations?

 

As for the clay, we are using it for bath. DD loves it. She said makes her feel better. especially after an airplane ride. I measured Magnetic field in the Plane last time I was flying. With the plane not even taking off, the meter maxed out on reading already, same in air. So i know it's really bad up there. The reason I even took a measure was because DD offten has fever right after flight, so I suspected EMF a culprit..then I started to bring clay on board, load mud on her feet then put sockes on. Uncomfortble, but she never had fever since that practice. Clay neutralize EMF and radiation I suppose.

 

Another reason we use clay bath often is that our house (rented) has dirty electricity and copper water pipe. I moved out beds to best location but still read between 2-3. and other place high between 6-15. I know I need to move, but i am so exghusted and has been putting it off. Is it true that you can't heal lyme unless this EMF thing is resolved? the landlord is not going to do anything about it, that I know. Is there anything else I can do to ease this meanwhile?

 

 

By the way, I myself is taking Zhangs, for a treatment test (that is, if I have herx, then most likely i have it), my lab test shows band 39 IgM present, and Ca4 high, Ferretin low. my ILAD not sure if I have it or not. She did gave me Iron supplements, I took it for a day and it made me dizzy so I stopped..don't know what else to do about iron, Molases?

 

I noticed a few thing with Zhangs on me. About 2 wk into it, I did feel sick with flu-like syptoms, sore eyes, fatigue, neck/shoulder pain. lasted about 3-4 days. but who knows what it is, herx or not? I am on it for about a month now. What I did notice was that the brownish rusty shadow on my face started to lift, my face is a bit patchy but brighter. So I am very happy about that. these shadow started when I first had my hyperthyroid in 2008, and it won't go away ever since. The other thing was I have a red painful, burning bump coming out on my upperback near spine, size of a qurter. that spot have been painful for about 2 yrs now on and off (deep inside). It seems now that it came out to the surface, it does not hurt inside...I have to wait a little longer to see. What happened there? anyone has this kind of experience?

 

Wish you all well...

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I just want to add that when it comes to the complexity of methylation and how that affects detoxification and especially as it relates to MTHFR mutation, I have heard from few (including doctors) who understand it better than LLM. Several of us share in the difficulty of dealing with children who have MTHFR mutation and also KPU. For those who may not know, that causes huge issues with methylation. As a parent to those children, you have no other choice but to become a chemist. I have been a nurse for 26 years, but have learned more about the human body since my children have been diagnosed with MTHFR & KPU than I learned in Nursing school. Thank you LLM for all your help with that issue.

 

Dedee

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Hi LLM,

 

Can you tell me how to check methylation status, including transsulfuration pathway? Thanks!

 

There are many things that effect methylation. Methylation is a process that occurs thousands of times per second in your body. Think of it as a sort of metabolism, even though that may not be the medically correct word. When doctors talk about the methylation cycle, they're talking about a specific type of "metabolism" that effects a handful of essential chemical processes. Picture a rotary or roundabout on a roadway. Cars enter into a one way circle and can get off at various exits along that circle. Well, if there's a traffic jam at one of the exits, it mucks up everything in the entire circle and along all the roadways that branch off of that circle.

 

You can have a traffic jam due from two causes - poor diet or genetic mutations. Epigenetics is the emerging field of understanding how genetic mutations can cause traffic jams. Unfortunately, while there are several genes involved in methylation and related processes, there are only a few that you can test using commercial labs. The one most commonly available is the MTHFR genetic test. Here's Quest's test: http://www.questdiagnostics.com/testcenter/TestDetail.action?ntc=17911 But any lab in your area probably has a similar test.

 

If you have one type of MTHFR mutation called C677T, you need to take a modified form of folate (vitamin B9) instead of the regular form found in most vitamins and fortified cereals. If you have another mutation called A1298C you need to take different supplements to help detour around a different traffic jam. There are other mutations but these two are the only ones you can test for with a commercial lab.

 

You can also have a perfectly normal MTHFR gene but still have methylation traffic jams if your diet isn't giving your body all the right nutrients to keep traffic flowing. One thing to test is your level of homocysteine, which gives a peek into how one part of the traffic circle is doing. You can also test methionine levels which peeks into a different part of the traffic flow. But this is something that seems to be touched on only briefly in medical school. If doctors have heard of it, it's primarily in the fields of heart disease and stroke. Very little focus has been on how methylation also effects seratonin and neuropsychiatric issues. But for my daughter, this is the piece that has really improved since addressing methylation. Her seratonin levels have stabilized and her mood swings and anxiety are gone (knock wood). The best advice is to work with a doctor who's up on this emerging field - like a DAN or an LLMD who attends conferences or is tuned into new developments.

 

The other part of the methylation circle leads to a road that is your body's detox pathway, known as your transsulfuration pathway (think of this as the road to the garbage dump). Having a traffic jam in the methylation cycle can leave you short on resources to clear your body of damaged cells and toxins, meaning garbage starts to litter the highway instead of making it all the way to the dump. There are also other pathways that feed transsulfuration and they can cause problems too. My son has a genetic mutation that makes him deficient in zinc and B6 (a condition called KPU or pyroluria). Since B6 is needed for a smooth transsulfuration pathway, he got a lot of traffic jams in this part of the highway system. So one thing you can do is test for pyroluria to see if this is a problem. You can also take supplements that help the transsulfuration pathway and encourage the body to make glutathione (the body's most important/bountiful antioxidant). These are the things Red and I discussed earlier in the thread - alpha lipoic acid gets converted into glutathione, so you can take alpha lipoic acid supplements. Resveratrol, vitamin C, CoQ10, tumeric, curcumin, taurine - also work in various ways to support your body's efforts to get rid of damaging substances and reduce inflammation.

 

As Red pointed out, this is a very complex topic - since I have no formal medical training, you need to realize I'm greatly simplifying my explanation and may not always get things 100% medically correct, I'm only trying to paint a picture, not give medical advice. A doctor who understands this stuff is worth his/her weight in gold. Unfortunatley, they are very hard to find. But by looking at the traffic jams, you can really make great gains in your overall health. I'd personally start by testing for MTHFR mutations, pyroluria and homocystiene and cysteine levels. You can also test your HLA-DR gene, which effects how well you can get rid of toxins and discuss with your doctor how well you tolerate sulfur, which plays a big role in transsulfuration.

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