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LNN

The Biotoxin Pathway

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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.publichealthalert.org/Articles/scottforsgren/biotoxin%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.

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LLM-

 

Sorry you are awake at night :(

 

I kinda skimmed the post, kids, dh and tv on- so not able to fully concentrate. But, this does sound plausible to me. I mean really, if you are addressing an illness, you should be seeing improvement. I have not delved into the science of the article, but on the surface it sounds a lot like pandas. Inflammation, autoimmunity and cykotines in response to illness, or actually the toxins produced by the illness. All of this due to a genetic succeptibility.

 

Am I getting it?

 

So I am curious- what are the treatments?

 

You know how I have/ am struggling with lyme vs pandas- and this is the thing I find so frustrating. In my kids case, treating for lyme has done nothing (yet, anyway) good or bad. But, treating for pandas with immunomodulation has always helped, and yet, is contraindicated in lyme. Ggrrr.

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I remember reading this with great interest and feel that it is very important. But I came away not really knowing what to do next. I wish I had a doc that knew what direction to take. I'll ask our neurologist next time we go if I can get this printed off. If we can come up with a biotoxin protocol with testing and treatment, I think it would help a lot of people. Maybe it's already out there and I just don't get it.

 

Susan

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I saw a doctor yesterday that said my daughter's +HLA DR4 needs to be seriously addressed for any healing to occur. He couldn't believe all the elevated IGG's of other infections she is harboring. I think anyone with Lyme should be tested for HLA's to see if they will have a treatment resisant case. I wish I would have known this information in September. It comes down to what SFmom and others have been saying all along...detox and drainge - very, very important!

 

I hope to check my HLA & MSH this week. I wake up at night every hour extremely thirsty and have a drink at the edge of my bedside. I bet my MSH will be low. I start a product next week that will help thin my blood to assist in killing the Bb. Lyme likes thick blood.

 

Thanks again LLM! Now get some sleep! :o

Edited by philamom

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LLM: I have been researching this same topic lately because my son has been diagnosed with KPU (HPU). I suspect both of my children are positive for different variants of the HLA gene since many of my family members have been tested positive for these genes because they have serious autoimmune issues. I believe there is a correlation between KPU and the HLA gene since both are dealing with poor detox mechanisms. Following is a great article my doctor gave me about KPU:

 

 

http://lymelighters.org/uploads/012610_KPU_Forsgren_explore_18-6.pdf

 

Interestingly, roughly 1 out of 4 people have a positive HLA gene and 1 out of 4 kids will tic at some point. I wonder if these 1 out of 4 kids who tic have the HLA gene? My good friend has three kids who tic with illness and they all have problems with mycoplasma. So far, 2 out of 3 of her children have been diagnosed with KPU. Here is a quote from the article about HLA and KPU:

 

 

"Dr. Klinghardt has followed the interest in HLA

genetic typing in regards to biotoxin illnesses such as

Lyme disease and mold. Until now, patients with certain

halotypes were considered more difficult to treat as the

body could not properly and effectively respond to and

remove biotoxins from Lyme disease, molds, or in the

worst cases, both. In his experience, once the HPU

issue is addressed, these HLA types become far less of a

concern in most patients."

 

Most people can test for KPU via a $55 urine test.

 

Ideally, you are supposed to treat for KPU at the beginning of lyme treatment and then dealing with lyme is supposed be a much simpler process since you have dealt with your detox issues first. Both of my children are finished with lyme treatment and I am trying to figure out if I will still do the KPU treatment. It is an intense treatment because you are replenishing the body with high dose minerals that are vital for detox and in doing so, you are dislodging heavy metals which took the place of the zinc in your body. So, you need to make sure you are on a heavy metal detox program.

 

Has anyone done the KPU treatment?

 

Elizabeth

Edited by KeithandElizabeth

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OK so a couple of us have been discussing this off forum. The other issue that there is typcially a problem with KPU. A urine test is available to test for KPU and it is believed by Dr. Ann Corson that about 80% of all chronic Lyme patients suffer from KPU. Obvious signs of KPU would be white spots on finger nails, white patches on skin not vitiligo and adverse reaction to chlorine. So a rise in symptoms after swimming in a pool.

 

What it has come down to after many discussions.... is that KPU and HLA DR markers indicate ones ability to DETOX properly toxins (endotoxins, exotoxins, biotoxins, heavy metals, etc). There is a protocol to treat KPU and some will be attempting over the summer but also has a herxheimer response involved.

 

LLM I definitely think you are on to something and should be investigated for your son. I would also read up on KPU 'sorry more to read this weekend'. I think your son's response to the hdIVIG might be an indication too.

 

In the interim keep that detox stuff in the essential column: Milk Thistle and Charcoal pills (as many as your son will take). They have bentonite pills now available at Iherb. I think its more the consistency within reason verses how much. So if your son will only take four pills.... then it is four pills.

 

Thanks for posting.

 

Edit: Obviously Elizabeth and I were posting at same time and she too mentions KPU. We will be testing older DS for KPU also as we wind down on treatment so a few of us may/or may not have experience treating it shortly and will be able to give perspective on HOW ROUGH IT is to treat.

Edited by SF Mom

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It is an intense treatment because you are replenishing the body with high dose minerals that are vital for detox and in doing so, you are dislodging heavy metals which took the place of the zinc in your body. So, you need to make sure you are on a heavy metal detox program.

 

Has anyone done the KPU treatment?

 

Elizabeth

This rings a bell with treatment my ds was doing. He was on 'CORE' BioPure mineral supplements for at least 3 months but has now been taken off of them. They had to be taken with a meal.

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this does sound plausible to me. I mean really, if you are addressing an illness, you should be seeing improvement. I have not delved into the science of the article, but on the surface it sounds a lot like pandas. Inflammation, autoimmunity and cykotines in response to illness, or actually the toxins produced by the illness. All of this due to a genetic succeptibility.

 

Am I getting it?

 

So I am curious- what are the treatments?

 

You know how I have/ am struggling with lyme vs pandas- and this is the thing I find so frustrating. In my kids case, treating for lyme has done nothing (yet, anyway) good or bad. But, treating for pandas with immunomodulation has always helped, and yet, is contraindicated in lyme. Ggrrr.

 

Yes - what took me 3000 words = you summed up in 4 sentences! You get it!

 

I too wondered why DS did so great on month-long prednisone tapers. Like your girls, it was a miracle for him. Which is why I dismissed lyme for so long. But now I think that if this is true for DS, then the lyme lowers MSH, sets off a cytokine storm, genetic susceptibility results in poor detox/autoimmunity/immune dysfunction, and the inflammation in the basal ganglia interrupts normal signalling and results in neuropsych symptoms. Prednisone would halt to cytokine storm (but chronic lyme would set the whole thing back in motion which could explain our inability to sustain remission longer than 2 months (vs. the strep "exposure" theory I once thought).

 

Shoemaker advocates using binding agents in a big way as part of the regular lyme treatments. He likes Actos (a diabetes drug) + Cholestryamine (a cholesterol drug that works by binding) but don't think either are appropriate for kids.

 

And for the record - yes, I woke up at 3am on Wed due to stress and worry. But then Thur night was woken by DS who had lost his blanket (and felt I should be awake to know this) and last night by DD who also felt I needed to know she was cold and uncovered. Once I get fully woken, it's hard for me to get back to sleep. But I'm not quite as stressed as I sounded. Tonight I will duct tape the blankets to their shoulders and hopefully sleep well.

 

Got 10 charcoal pills into DS without issue today. Isn't practical during school days, but will be putting together a serious plan for the summer. I think DS feels so bad right now that he'll cooperate (at least until he starts to feel better).

Edited by LLM

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Did I read somewhere that there were some potential issues with Actos - talk of a recall?

 

 

:mellow:

 

Shoemaker advocates using binding agents in a big way as part of the regular lyme treatments. He likes Actos (a diabetes drug) + Cholestryamine (a cholesterol drug that works by binding) but don't think either are appropriate for kids.

 

Edited by justinekno

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I have to chyme in here...this is everything that I have been dealing with for almost 5 years now. For the record, I do want to say that cholesyramine has been miraculous at keeping my children healthy. I have never used natural toxin binders, and maybe a I should. But, since moving out of our moldy home (almost two years ago) and continuing to take cholestyramine, none of my three children, nor myself have needed an antibiotic to cure an ilness, their health has continued to improve greatly. We all have the mold HLA susceptibility gene. I have wondered since clearing out toxins and keeping the cytokine storm at a minimum has this enhanced my childrens' ability to fight off infection?. Which leads me to also wonder, in the case of pandas, whether many pandas strep infections/reactions would clear up if they underwent longterm toxin removal therapy, i.e., cholestyramine. Just a thought. I do not claim to know much abou Pandas, except what I read on this forum. But, I can share my experience, which is that my kids have made it through the first two winters of their lives without a serious cold, or bacterial infection. Before their treatment for biotoxin illness, they had chronic ear, sinus, pnemonia, infections.

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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.

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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.

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LLM: I have been researching this same topic lately because my son has been diagnosed with KPU (HPU).

 

Elizabeth,

Are you looking at KPU because of treatment relapse or some other reason?

 

Thanks for the article link - very helpful. Getting zinc/copper et al tested this week as part of a blood draw to check on liver function. My antenna is now really up on all this stuff. Its like pulling on a loose thread. You find it's attached to so much other stuff and sometimes I feel like I'm on dance step #4, thinking we're making progress, only to find we need to take steps backward and start at an earlier step. It would be one thing if we were dealing with an adult. But with kids, they're forming their identities, missing key steps in building an academic foundation, while we flop around, trying to figure this out before they lose even more time.

 

I think it's this sense of lost childhood that is the hardest thing for me to deal with.

Laura

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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.

I just started with Chlorella (Pyrenoidosa) by BioPure. They are tiny round pills that are very easy to swallow. I was told to take six with breakfast and dinner (and lunch if I wanted more). I think you need to purchase it through a doctors office, though. Six pills equal 1200mg. This amount is for myself (not daughter).

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I just started with Chlorella (Pyrenoidosa) by BioPure. They are tiny round pills that are very easy to swallow. I was told to take six with breakfast and dinner (and lunch if I wanted more). I think you need to purchase it through a doctors office, though. Six pills equal 1200mg. This amount is for myself (not daughter).

 

My dd9 and I are taking 2 400 mg pills a day, we just started last week so we were starting slow to see how it went. I don't know how much to work up to though. We just have Jarrow brand, nothing fancy or special so hopefully it will work!

 

Susan

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