I just recently found out from my doc that I have 2 genes that do not allow me to detox (the 4-3-53 gene and the 15-6-51 gene). My labs also showed chronic inflammation from biotoxin exposure (I believe he ran the "S" mold panel).
However, my doc says he believes I may have ingested a biotoxin of some sort versus inhaled, which makes me wonder if it's mold?
Do ya'll know much about biotoxins in general? I was pretty surprised to find out my test results.
I'm starting to wonder if this has been the cause of my crazy problems.
Or, is it possible to have these test results and not even have any physical symptoms caused by it?
I just began Cholestyramine and am waiting for some type of results. Anybody have experiences with this?
Any thoughts welcome, as I know nothing about this topic!
posted
You should read Surviving Mold. It will help you to understand the whole biotoxin thing much better.
Survivingmold.com
There is so much information in that book, it can't really be summarized in a couple of paragraphs.
I'm surprised that your doc would say he thought they were ingested. The effect usually comes from inhalation (mold and others) or infection (Lyme).
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
This is the "class for dummies" regarding the Surviving Mold doctor. (The notes I took from a 2012 Lyme Conference.) It is a good summary of the subject:
Dr. S 101: An Explanation of the Treatment Protocols of Neurotoxin Illness by Dr. S (Mold Toxicity)
Presented at 2012 ILADS Conference, Nov. 3, 2012
Dr. N
He prepared this presentation in conjunction with Dr. S because so many people have commented that they cannot understand Dr. S's presentation. So, this is the presentation for "dummies."
25% of the population cannot process mold toxin. This is the definition of mold toxicity.
Not all molds are toxic. If you test your home with mold plates, the lab that analyzes them will separate out the non-toxic molds for you.
Mold is a sensitizer. So is lyme disease. They both make people hyper-sensitive to everything.
For example, there are people with electromagnetic sensitivities. These people can't think in the presence of an electric clock, for example. Tests were done that showed their brain waves go from normal (thinking) to the delta wave as an electric clock approached their head.
Delta waves are basically when "the lights are on, but nobody is at home."
Smart meters and many other electrical devices make these people unable to think.
Mold symptoms are similar to lyme disease symptoms. He discussed a few symptoms that are unique to mold. These include:
lightning bolt pains, profound nausea and vomiting (possibly projectile), weird paresthesias (that most doctors would say are impossible since "there are no nerves there"), and sensitivity to static shocks.
People with mold toxicity cannot make antibodies to mold toxins, so they stay toxic. The toxins recirculate, even if they move out of the moldy environment.
Mycoplasma and chlamydia also make these toxins.
In those with mold toxicity, the mold makes fat cells produce a flood of cytokines (causing inflammation), and people lose the ability to know when they are satiated (stomach is full). This effect is known as leptin resistance. So, they can gain 40 pounds in a year.
Also, these people cannot make enough MSH, so their endocrine system collapses. They will have many hormone imbalances (adrenal, sex hormones, etc.)
Also, the person cannot make VIPs.
Toxins can disrupt antibody formation. Therefore, these patients cannot heal. Their inflammation cannot turn off. They will have high C4a and C3a.
The mold toxin cannot leave the body. Dr. S. recommends using cholestyramine to remove it. Cholestyramine is a binder.
Also, high cytokines stop production of VEGF, so the patient will have post-exertional malaise. Without VEGF, the person cannot increase blood flow to cells when needed. That is what causes the post-exertional malaise that lasts for days after exertion.
Being low on MSH means that the body can't stop reacting to pain. (A normal person's body stops reacting to pain at some point.) So, these mold toxicity patients continually have pain. They are often diagnosed with fibromyalgia because of this symptom.
Being low on MSH also means that the person will urinate more, sweat more, and therefore have a small layer of salt on their skin. This is likely why they so strongly react to static electric shock. The salt makes them an excellent conductor of static electricity.
MRSA is a subset of MARCONS. MARCONS itself causes no symptoms, but it massively interferes with MSH. It causes more cytokines to be produced.
Culture the sinuses to look for MARCONS. Treat MARCONS with a nasal spray called BEG Spray. He uses the BEG spray and rifampin.
Also, autoimmune conditions are increased with mold toxicity. The symptoms can look like MS.
A VIP deficiency will present as air hunger. Treat this with the nasal spray. It works at the very first dose.
Next, he discussed the Visual Contrast Test. This test is a sheet of paper with various special types of lines drawn on it. It is held a certain distance from the patient to see if the patient can see all of the lines. This is a test for mold, lyme, and mercury toxicity.
(These toxins affect retinal function. So, that is how the test works. It is testing retinal function.)
Treatment of Mold Toxicity
Recommends the use of cholestyramine and sometimes also adds Actos. The cholestyramine should be obtained from a compounding pharmacy so that there is no sugar or NutraSweet in it. Welchol is weaker and is better tolerated. So, it can also be used if necessary.
The treatment mobilizes the toxins. Therefore, it produces a herx reaction.
Start with 1/4 scoop of cholestyramine per day and then increase. Don't increase dose too fast. You must take the cholestyramine at least 2 hours away from meds. He recommends taking it about 1/2 hour before lunch because the least meds are generally taken at lunch.
If the patient's leptin level is good, then you can also add Actos to the treatment. Actos can cause hypoglycemia and swelling. It works 15-20% of the time, but is well worth a try because if it works, it works within a week.
DHEA is low in 99% of his patients. Adding DHEA makes people feel better in a few weeks.
Zith 250-500 mg once or twice per week is a good biofilm buster. It liquifies body secretions and biofilm.
He gives his patients Melatonin so that they can sleep.
If the patient has pure mold toxicity and nothing else, Zocar 80 mg per day is the treatment. Take CoQ10 along with it.
If a person feels better when they get to an altitude of over 7,500 feet, that is a clue that their ? is low. (I missed the word here.) Going to high altitudes make these folks feel better, so that is the clue to this abnormality. Procrit may help. At high altitude, the body makes EPO (Procrit) and some with CFS feel better at 8,000-10,000 feet. Procrit is a series of 5 injections over 2.5 weeks
ERMI test kits are available on line to test your home for mold. Dr. S has a scoring system for the ERMI test results.
Remediation of your home may not work. It is very expensive to remediate, so he wants mold patients to know this in advance.
posted
You have one of the "dreaded" genotypes (4-3-53) along with the worst Chronic Lyme genotype (15-6-51). I've got the same Lyme genotype along with a different multisusceptible that isn't as bad as yours.
Imperative to be taking some sort of binder such as CSM, clay, charcoal, chlorella, etc. to mop up the toxins your body can't remove on its own.
I started off with CSM and now am taking Byron White Detox 2 which has clay and charcoal in it. I've managed to get my C4a level down to normal levels and I can now finally pass a VCS test.
Not sure why your doctor would think you ingested a biotoxin, usually it's from Lyme or mold. If you're not living in toxic mold exposure it's probably Lyme which will cause a lot of these panels to be off as well.
[ 05-02-2014, 02:56 PM: Message edited by: faithful777 ]
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droid1226
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Member # 34930
posted
Joe Brewer had a great talk on this and revealed his protocol at ILADS 2013. It addressed both inhaled and ingested mycotoxins. I only know one person who's tried it. She's better now after 3 weeks of trying it. She was unresponsive to IV abx, Mepron, Artemesia, etc..
Cholestyramine is a critical part of his protocol. So is inhaled ampho....
I only have a sample size of one, but she's the only one I know who's tried it. So, for me, it's 100% success rate.
posted
Droid, I've done this protocol. Some others here have too. Here is one of the threads I started about it. I did it for 2 months. I went off abx at that time and relapsed Bart. I think it's something big, but I have to put off treating it for now because I'm a little rough from the Bart.
posted
my doctor started talking to me about this too and is running some tests. sounds like an interesting book to check out.
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droid1226
Frequent Contributor (1K+ posts)
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posted
RC1
Idk why I never clicked on that thread. But I'm reading through it now. Thanks
I also have unrelenting bart but I'm foregoing anymore lyme and co's treatment for this because of $$ and also because I'm done with ABX for a while. We'll see. I feel the cholestyramine is the crucial part of the protocol for me.
I'm also switching the ampho to diflucan and tweaking a few things to start. Should be interesting.
posted
Droid, did you learn much through that talk about "ingested" toxins? My doctor is saying he believes mine was ingested, although I'm unclear on why he thinks that. Maybe it has to do with how my symptoms are presenting.
So far no problems with the good old constipation from the CSM; knock on wood. My symptoms have been increasing since I started the full dose, which I was told may happen as a result of toxins being stirred up. I've also noticed the last 2 days I'm getting achey muscles. Does that seem like some kind of reaction?
Only been taking the full dose for 4 days...I wonder how long it takes to clear out all those crazy toxins?!
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Regarding how long it takes to clear out the toxins, see this quote from Burrascano:
"It has been said that the longer one is ill with Lyme, the more neurotoxin is present in the body. It probably is stored in fatty tissues, and once present, persists for a very long time.
This may be because of enterohepatic circulation, where the toxin is excreted via the bile into the intestinal tract, but then is reabsorbed from the intestinal tract back into the blood stream. This forms the basis for treatment.
Two prescription medications that can bind these toxins include cholestyramine resin and Welchol pills.
When take orally in generous amounts, the neurotoxin present in the intestinal tract binds to the resin, is trapped, and then excreted.
Thus, over several weeks, the level of neurotoxin is depleted and clinical improvement can be seen.
Current experience is that improvement is first seen in three weeks, and treatment can continue for a month or more. Retreatment is always possible." (page 13)
posted
Thanks TF! Good to know. I've been a little frustrated because I haven't seen improvement yet, but I've only been on a full dose for 4 days. I suppose I'm being somewhat impatient? My bad habit...
Actually, I've noticed an "intensification" of my physical symptoms the last few days of finally being on the full dose. Has anyone else experienced this?
I'm taking it as a good sign that something is happening. How long does this weird intensification phase last? My doc did tell me it was normal, just didn't say how long it typically lasts.
mojo
Frequent Contributor (1K+ posts)
Member # 9309
posted
I think it depends on the person - how germ infested we are and how well we detox.
I asked my Dr. for Cholestrymin because my other meds cause severe diarrhea. I use it once per day an still get some diarrhea if I'm not super careful.
Together with my sauna it's been working fantastic for detox and I feel so much better.
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CherylSue
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posted
My LLMD gave me an RX for Questran, and I will be starting it soon.
Posts: 1954 | From Illinois | Registered: Aug 2007
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My biggest piece of advice is to watch out for constipation while taking this. I was fine the first week and a half so thought it wouldn't be an issue. After that I suddenly became terribly constipated, in so much pain and could not fix the problem. I ended up at the doctor because over the counter laxatives wouldn't even help at that point.
Drink tons of water, take laxatives or at least stool softeners, eat lots of fruits and vegetables...be proactive.
Other than that I've had no side effects. I took about 5 days off of the meds to recover from the constipation and just started taking it again.
Has anyone else suffered from the constipation? Or any other side effects worth mentioning? Did it cause a flare in original symptoms for anyone?
I think it's a good medication but a little tricky with timing, etc.
CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
Oh boy, I started the CMS today 1/2 hour before lunch. Within that half hour I started to feel lightheaded and loopy. I'm eating now, and hoping this fatigue and lightheadedness goes away.
I only took 1/2 packet. That's all I am taking today.
Posts: 1954 | From Illinois | Registered: Aug 2007
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posted
Hi Cheryl...I took a 5 day break because I was on a trip, just started back on it yesterday and today I feel just like you describe...lightheaded and sorta loopy.
CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
I have a high C4A count, and my doc wanted me to try this. The doc didn't tell me to start slowly, but after reading about it here, I started with just a 1/2 packet yesterday.
I slept 11 hours last night, and I feel sick today. A friend is coming over for a visit today, but I think I'm just herxing. I am taking burbur.
Posts: 1954 | From Illinois | Registered: Aug 2007
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Funny how we all can be a little different- I also had a sky high C4a, and was put on cholystramine
and have just 1 of the don't detox well 'dreaded' genes. I didn't feel anything from the cholystramine - boy an insomniac like me would have given anything to sleep a solid 11 hours in a row!
We (dd and I) did it for 2-3 months, and I do think it helped clear a strange bump that came up on the side of my neck during treatment finally go away.
After the 2-3 months doing it, I insisted we stop, as my dd and I are pretty lean, with no extra cholystral to spare, and I didn't want fats being pulled out of us anymore.
We also went through having our whole house checked for mold, BEG spray, etc. But, despite each of us having that 1 'dreaded' gene, and our house being okay,
the mold issue wasn't the ticket for us. It was costly, too. But I do pay attention to detox, and that is a big deal.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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