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  • pandas-cover-cropped.pngYour Child Has Changed; Should You Consider PANDAS?

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LNN

The Biotoxin Pathway

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Prime Chlorella - A lot of information on their website: ttp://www.pure-chlorella.com/info.html

 

I take 10 pills in a.m. and 10 pills in p.m. They can instruct dosage amount via the phone for size of child.

 

-Wendy

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Hi Laura:

 

My son finished lyme treatment about 2 months ago, but he has had some lingering issues (he is around 90%) and he has had several infections post lyme (klebsiella, flu, and mycoplasma).

 

Our doctor is now checking most of his patients for KPU and said that he feels that our son's lingering issues are toxin issues and that the KPU treatment will help him deal with toxins. I am working with a nutritionist who feels that heavy detox will also help with this without having to do the KPU treatment so we plan to try the heavy detox with bentonite clay first for a couple of months. I will let you know how that goes. This will be our first week post lyme that our son has not had an additional infection and we took him off antibiotics this weekend. So, I will give you an update in the future.

 

We have not checked our daughter for KPU. She is 7 months post lyme treatment and is also off antibiotics. She is around 98%. Our experience with her has been a need for a 10 day course of antibiotics with mycoplasma or staph. We can usually tell when she has picked up a new infection by an increase in "PITANDS" symptoms. Her lowest since the end of lyme treatment has been 85%. Within a few days of starting antibiotics, she jumps back up quickly. I am hoping that as time goes on, we will no longer see ANY symptoms with illness.

 

Elizabeth

Edited by KeithandElizabeth

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I've been researching MSH (melanocyte stimulating hormone) a lot this week. This is a hormone that controls inflammation and in lyme patients tends to be seriously low. For the past 2 months, after changing abx and adding tindamax, DS has been very Pandas-like. Return of tics, handwriting looks like a stroke victim, mood issues, yada yada. We stopped tindamax a few weeks ago and things have been tapering down. But this week, I got a call from the teacher saying DS was acting inappropriately, unable to regulate behavior, unresponsive to discipline, not hearing his name when called repeatedly. At nights, he wasn't all there. He was like a Stepford wife - sort of muted and dull, on autopilot, mentally someplace far away. So I get out the motrin and see an immediate improvement. Teacher tells me yesterday he was significantly better. So I'm thinking we're really in a bad spot. If treating lyme puts him into a Pandas state, we can't use the tools to beat lyme and since he has lyme, we can't use the Pandas tools like prednisone to stop the cytokine storms.

 

So I've been awake at 3 am most of this week, chasing down our recent forum topics on MSH and the HLA gene. Then I found this:

http://www.publichea...%20pathway.html

It is important that we look deeper in terms of recognizing that there may be more than just an infection with Lyme disease or an exposure to mold at the core of one's ongoing symptom picture. Biotoxins, and the inflammatory responses which they initiate, may be at the center of the illness.

 

If a person is genetically susceptible to a biotoxin-associated illness, it is likely the case that the biotoxins themselves, rather than Lyme infection or mold exposure, are causing many of the symptoms being experienced. Even further, it is plausible to suggest that infection could be cleared, or the exposure entirely removed, and yet the remaining symptoms may be almost entirely due to circulating biotoxins. It comes down to a genetic predisposition which results in the body's inability to remove these biotoxins. Long after the initial exposure or infection is gone, the toxins may live on....

 

There are specific genotypes associated with specific susceptibility to biotoxins. For patients with Lyme disease or mold exposure, approximately 25% of the population has a genetic predisposition which results in an inability to clear biotoxins naturally. Understanding whether or not one is in this population can provide key insight into the cause of illness. Though the result may suggest a genetic make-up which cannot itself be corrected, once known, specific interventions can be put into play that may significantly improve the outcome.

 

The test is called HLA DR and it is commonly known as a test which provides insight into possible organ rejection after a transplant operation. Human Leukocyte Antigen (HLA) is a grouping of genes that lie on chromosome 6. In the case of biotoxins, HLA codes for whether or not a person is capable of clearing biotoxic substances following an exposure. For these people that are genetically incapable of clearing these toxic substances, biotoxins will continue to circulate within the body indefinitely and may reduce one's chances of recovery. There is generally no "selfhealing" in these cases without appropriate interventions.

 

The "Biotoxin Pathway" illustrates an ongoing, amplifying cascade of events that starts with exposure to a biotoxin in those individuals who are genetically susceptible. The biotoxin then binds to Toll receptors, primarily in fat-cells and cells that line blood vessels, resulting in the production of proteins called cytokines which are involved in immune response and inflammatory processes. Cytokines recognize invaders and recruit additional cytokines in response.

 

In the world of biotoxins, it is the biotoxin itself that continuously signals the body to produce more cytokines. It is this excess cytokine production that makes us feel unwell. Excess cytokines result in flu-like symptoms, body aches, temperature fluctuations, cognitive difficulties and other symptoms. This increase in cytokines has further downstream effects.

 

VEGF (vascular endothelial growth factor) is often reduced which leads to fatigue and reduced blood flow. Hypoperfusion, this resulting reduction in blood flow, results in a starving of cells for nutrients and oxygen. There is also an increase in MMP9 (matrix metalloproteinase) as the cytokine itself causes the white blood cells to release MMP9. MMP9 is a superb marker for the presence of excess cytokines.

 

MMP9 may be responsible for delivering inflammatory compounds out of the blood and into the brain which causes plaque formations similar to those seen in MS. In Lyme disease, MMP9 levels may skyrocket as the result of treatment with antibiotics and the resulting bacterial die-off in what is commonly referred to as a Herxheimer reaction. Taking this even further, if you give a Lyme-infected person antibiotics and they are not HLA-susceptible, they generally have an uneventful recovery.

 

An increase in cytokines may also trigger auto-immunity. There are three key types of antibodies observed in those with biotoxin-associated illnesses. These are myelin (the protective sheath around nerve cells) antibodies, gliadin (a protein found in gluten) antibodies, and cardiolipin antibodies which impact circulation in the small blood vessels.

 

There may be notable increases in markers which reflect activation of the complement system, namely in C3a and C4a. There is a significant difference in C3a and C4a levels between controls and the Lyme or mold population. In fact, C4a levels invariably become elevated, often as early as twelve hours after a tick bite. In the case of those with a mold-susceptible HLA type, C4a significantly increases within four hours after re-exposure to a moldy environment. C4a can be a helpful marker in determining whether or not a remediated home is still a danger for someone with mold biotoxin susceptibility. If C4a levels have been reduced via appropriate interventions and C4a levels rise upon reintroduction to the suspect environment, it is a sure sign that the environment is not safe for the patient.

 

MSH, which is made in the hypothalamus, is the most potent anti-inflammatory compound we have. It is responsible for regulating innate immune response and is involved in numerous hormone pathways. Reduced MSH is at the heart of the "Biotoxin Pathway" in that many negative downstream effects result when MSH is low. Of interest here is that in Lyme disease, chronic fatigue syndrome, mold illness and any other biotoxin illness regardless of the source of the biotoxin, MSH is low in about 95-98% of patients.

 

When MSH levels are low, people become sleep disturbed; they have chronic pain; they experience leaky gut syndrome; their recovery from illness is delayed; they develop multiple antibiotic resistant coagulase negative staph colonization (MARCoNS); they have frequent thirst as a result of lowered anti-diuretic hormone (ADH); they have a loss of libido due to a lowering of sex hormones and more.

 

MSH is involved in the production of melatonin and endorphins. This resulting lack of endorphins increases our perception of pain. MSH regulates the protective cytokine responses in the blood, skin, digestive tract, and respiratory membranes. Lowered MSH results in abnormalities in production of cortisol and fluctuations in ACTH (adrenocorticotropic hormone) which regulates adrenal function. It is when the biotoxin illness disrupts the production of MSH that so many of the symptoms begin to appear. When looking at the results of lab tests for reduced MSH and increased C4a, the difference between patients and controls is clear. Using these markers, the diagnostic accuracy of the Shoemaker model is compelling.

 

These are only excerpts. I cherry-picked paragraphs. The article goes on to discuss treatments, but geared toward adults. But I feel like I finally found the missing puzzle piece of why we do everything we're "supposed to" do and yet my son stays sick. This is beyond "herx" in the traditional sense. It's a chain reaction. We'll hopefully get the lab reqs to test MSH and HLA in the next week (must be done at Labcorp). I know a few others are in the same boat...maybe this will help all of us.

 

So how do I find this doctor. We are in NM. It took us years to find a PANDAS doctor. Now Im no thin king it is PANDAS

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I have used cholestyramine and chlorella. Lately I have used the BioPure brand of chlorella. I find that the cholestyramine works better than the chlorella for me. BioPure also has a chlorella growth factor liquid which I am now taking instead of the chlorella itself, but it is still not quite as good as the cholestyramine I am also taking. Perhaps for me the digestability is part of the issue for the chlorella, making the cholestyramine more effective.

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One more thing and not to get off topic. BUT, many children via ART or Lab tests are finding there is a huge viral component to the chronic condition. Our LLMD specifically mentioned Coxsackie's as being a common theme with the PANDAS 'like' on-set of children he is seeing. I would recommend doing a basic viral panel at next blood draw if you haven't already that includes several of the Herpies Viruses, EBV and Coxsackies - 'its a separate lab test for titers'. These particular viral panels/tests should be covered by insurance. XMRV is very expensive to test that is potentially not covered but many children are positive via ART. Or, you could also just start an anti-viral protocol. Here is what some are doing for viruses: Valtrax, ImmunoViro from Beyond Balance 'drops', SyImmune tablets 'chewable', Olive Leaf Extract 'Pills' (1,800 m.g. for older DS).... I believe there is some other herbals as well. We did notice a herx response when starting anti-viral.

 

I do believe checking for viruses/treating falls in the essential category. In our case, the Dr. said they've had the Coxsackie's for a long time due to extremely high titers. I asked if it would resolve with titers falling and he said 'yes' in time.

Edited by SF Mom

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We're using chlorella instead of chlorestyramine. Read on Klinghardts site that he feels it as good as or better. You have to work up to a high dose. The recommendation is 10g. We are at 5g. Worked up slowly to this. Not all brands are alike though. Researched that as well.

Can you share what brand you're using? Did you come across any pill forms that would be good options? I'm already looking at having to get a drink into him with fiber/miralax to prevent constipation/encourage BMs, so don't see much success in having to get multiple "disguised" drinks into him. I see NOW Foods has a 1000mg chlorella tablet - that might be an option. Any input?

 

Justine - Yes, also read bad stuff about Actos - things that made me discount it as an option for us. But now I can't find it again.

 

 

 

We're using Sun-A brand. It's supposed to have very good absorbtion. It is recommended to take high doses. Small doses won't detox. While you feel the heavy detox is necessary, you are suppose to take between at least 6g, ideal is closer to 10g. Then you can maintenace down to between 3g and 5g. I get the 500mg pills so he can take less pills. I am giving this to my older non-pandas daughter for constipation. Its working for both kids. My son has actually had some better days lately. Of course there is always a step or two back. Tics have been slightly milder. Whats known about chlorella is that you really can't take too much. No toxicity. I'm not opposed to chlorestyramine if I feel this doesn't produce results.

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Hi Laura:

 

My son finished lyme treatment about 2 months ago, but he has had some lingering issues (he is around 90%) and he has had several infections post lyme (klebsiella, flu, and mycoplasma).

 

Our doctor is now checking most of his patients for KPU and said that he feels that Quinn's lingering issues are toxin issues and that the KPU treatment will help him deal with toxins. I am working with a nutritionist who feels that heavy detox will also help with this without having to do the KPU treatment so we plan to try the heavy detox with bentonite clay first for a couple of months. I will let you know how that goes. This will be our first week post lyme that Quinn has not had an additional infection and we took him off antibiotics this weekend. So, I will give you an update in the future.

 

We have not checked our daughter for KPU. She is 7 months post lyme treatment and is also off antibiotics. She is around 98%. Our experience with her has been a need for a 10 day course of antibiotics with mycoplasma or staph. We can usually tell when she has picked up a new infection by an increase in "PITANDS" symptoms. Her lowest since the end of lyme treatment has been 85%. Within a few days of starting antibiotics, she jumps back up quickly. I am hoping that as time goes on, we will no longer see ANY symptoms with illness.

 

Elizabeth

I'm so happy to hear your children are off antibiotics for the most part. I think of you and your family often! Did you run the urine test for KPU...just wondering?

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One more thing and not to get off topic. BUT, many children via ART or Lab tests are finding there is a huge viral component to the chronic condition. Our LLMD specifically mentioned Coxsackie's as being a common theme with the PANDAS 'like' on-set of children he is seeing. I would recommend doing a basic viral panel at next blood draw if you haven't already that includes several of the Herpies Viruses, EBV and Coxsackies - 'its a separate lab test for titers'. These particular viral panels/tests should be covered by insurance. XMRV is very expensive to test that is potentially not covered but many children are positive via ART. Or, you could also just start an anti-viral protocol. Here is what some are doing for viruses: Valtrax, ImmunoViro from Beyond Balance 'drops', SyImmune tablets 'chewable', Olive Leaf Extract 'Pills' (1,800 m.g. for older DS).... I believe there is some other herbals as well. We did notice a herx response when starting anti-viral.

 

I do believe checking for viruses/treating falls in the essential category. In our case, the Dr. said they've had the Coxsackie's for a long time due to extremely high titers. I asked if it would resolve with titers falling and he said 'yes' in time.

Are you using these products together for your children's anti-viral protocol? Sy Immune - is two chewables a day? thx

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Actually, our doctor had just run out of the urine tests when we were in his office so our son tested for KPU via ART testing. So far, our LLMD has done the urine tests on all of his positive ART KPU tests and he has been right 100% with the ART. I thought my son had KPU issues long before we discovered lyme disease because of his reaction to chlorine and his complete inability to tan a few years ago. We are done with lyme treatment now and the herxing was very very rough. I have heard that if one does the KPU treatment at the onset of lyme treatment, the whole treatment will take less time and the herxing will not be as intense.

 

Elizabeth

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We do ImmunoViro and SyImmune Tablets for the twins and Olive Leaf Extract for older DS. Again, others have done just Valtrax or other herbal remedies. When ART is used its typically the anti-viral they are testing for at the time.

 

One reason our Dr. loves Alinia as a baseline antibiotic is because it is anti-parasitic, anti-viral and anti-microbial... My older DS has been on Alinia since last August. They have taken the twins off Alinia recently and will eventually rotate them back on... or at least that was the plan.

 

-Wendy

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We're using chlorella instead.

 

Can you share what brand you're using? Did you come across any pill forms that would be good options?

DS just started on BioPure Chlorella vulgaris. He has to take 20 pills (small green) 3 times a day 15 min. before meals. He does not like the taste. Dr. said we could mix in a smoothy.

 

Oops - See Michael mentioned this already. Lots of liquid recommended.

Edited by JuliaFaith

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Actually, our doctor had just run out of the urine tests when we were in his office so our son tested for KPU via ART testing. So far, our LLMD has done the urine tests on all of his positive ART KPU tests and he has been right 100% with the ART. I thought my son had KPU issues long before we discovered lyme disease because of his reaction to chlorine and his complete inability to tan a few years ago. We are done with lyme treatment now and the herxing was very very rough. I have heard that if one does the KPU treatment at the onset of lyme treatment, the whole treatment will take less time and the herxing will not be as intense.

 

Elizabeth

Good luck with your continued journey! Please keep us posted.

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It is 100% possible to overcome all these issues in our children and give them their childhood back or whats left of it. I work closely/train with two brilliant and experienced LLMDs. Genetic susceptibility can be brought under control based on your treatment protocols of choice, the order in which you treat- peeling away the layers is a good way but you and your health care practitioner need to know which layer to peel when, and overall lifestyle.

 

Several cases of the wrong stuff being gotten rid of at the wrong time sets us back a good few months. For example I've had overzealous Pandas docs or semi informed naturopaths go gung ho and start killing yeast willy nilly as the first layer to peel and that is a terrible disservice to a child/person.Sure yeast comes up high but it is holding the internal balance of heavy metals and other biotoxins bound to it. Can't just go around killing yeast just because its there.

 

Immune reeducation not immunemodulation is the key to lasting relief from Pandas and Lyme reactivity in my experience.

 

Once the underlying infections are brought under control, this should be immediately followed by introducing the body to healthy organ tissue once again. This can be done homeopathically and cold laser therapy to enhance the effect. It takes afrom 3 to 5 months in most people/kids depending on clinical status.

 

I've seen seasonal allergies, tree nut allergies all down by 60-70% in DS and we started this protocol in early March. The same goes for Mold sensitivity which is down by 50 to 60% by now. He is still affected if he sticks his nose into a flower, sits near fresh blooms for a long period, but just being outdoors is absolutely fine now. Mold wise if away from the basement of a moldy basement house, he's fine if upstairs. His best friend's house is moldy, parents are trying to save up to get it remediated.We stay only in the upper story when there and mostly try to invite them over to ours.

Neutotoxin wise- all symptoms of Aspergers have resolved. We had on the spectrum issues start at 22 months of age, progress for the better to Aspergers a couple years later after intensive Sensory Integration Therapy and Homeopathic RX and then with the Pandas and lyme you guys know about.

But anyways, its possible.Both my LLMDs are in agreement about this and follow the same philosophy themselves. One of them had Lyme, Bartonella, and MaRCONS, you name it. She is doing very well now,- same protocol as my DS- underlying infections under control, prophylaxis in place daily,etc.

 

So knowing which and when to peel a layer, working out all the underlying infections, emotional rebalancing using homeopathic hormonizing remedies that work on the hypothalamus and Limbic system (repressed emotions come to the surface- its very hard to deal with this herx), working out the nutritional and other hormonal etc imbalances in the body- we used homeopathic rebalancing the organs and cold laser to speed things along at this phase- , this ensures that the antibiotics are getting intracellular like they need to be, next retrain or entrain the immune system to normal organ tissue, work on allergies etc simultaneously and it is absolutely possible to see good results.

 

Immunemodulation, several abx, cysts busters, several herbal antimicrobials are often given to children. These in any combination will not reach all the organisms if the internal pathways are blocked as Laura's article points out.

 

KPU is one of the problems that does need to be treated but will correct with an overall approach. Going after issues symptomatically doesn't always work well in my experience. It takes a lot of energy and resources to treat each and every symtom, find relief, only to find another symptom has cropped up, now treat that one, is it a herx, is it exposure etc.

 

I agree with Wendy that we need to cast the net wide and understand all of the infections going on. Additionally in my experience treating every one of them is a huge overload of medications in the body. The goal should again be to go after the top infections that are killing the immune system and once those are identified and brought under control, the goal should be for our own bodies to be able to handle viruses, colds, stomach flu, regular flu etc. As we know reactivity will keep going down as treatments, if accurate, progress.This has been only been possible naturally, with nutritional, immune, stress, EMF support, avoiding excessive exposure,avoiding crowds, understanding that jumping back into each and every activity known to man is not going to happen for a while, and our LLMDs are in agreement too, which is a big plus.

 

Jodie

Edited by sptcmom

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