gigimac
Frequent Contributor (1K+ posts)
Member # 33353
posted
Hmm, I was prescribed csm and it made me feel scrappy. I wonder if it was a herx and maybe it was helping? It is interesting that it caused a herx and then u felt Better
Posts: 1534 | From Greensboro NC | Registered: Aug 2011
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
I may get bashed for this, sorry, JMO and experience.
Our 1st LLMD was very much into the Dr S thing. We tested, both came back with one gene of the 'dreaded'
I am sorry, but I do not think this is a death sentence. Yes, went on cholystramine powder- felt nothing, really, like any other binding agent- and,
I am very thin, no extra fat or cholysteral- I kept getting pushed to use more and more of this- didn't think that was good for me or a thin child after a point.
Did the whole ERMI testing of my home, had mold inspector come out, found nothing except an area in the garage, had it correctly fixed.
Dr. wanted more extensive Dr S tests, then scripts for off label use- it was so much money, all of this! Big money.
It turned me off. I was willing to go at this to a point- but basically, I felt I was there because I wanted treatment for Lyme and co. infections-
Not spending untold thousands spent starting with a color charted eye test online- not sure how scientific that analysis is-
Throughout my own Lyme treatment, I did concentrate on detox- with homeopathic remedies, many quality supporting supplements
Keeping bowels moving, glutathione suppositories, Epsom salt baths that produced sweat, walking for circulation...etc. I knew detox was vital.
At the last ILADS conference, I was very concerned when a speaker started talking about leaving every possession you own,
give up your house, uproot your family, pitch a tent.
Yes, real mold infested buildings and homes can and do make some people sick. But, I think this does not apply to everyone, and can be off putting.
I do not (JMO!) think having 1 of these genes, who by the way, something 1 man only designed, thought up,
-------------------- 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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BoxerMom
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Member # 25251
posted
I am happy for any opinions.
This is good to hear. I also don't consider it a death sentence, but I think it's very relevant for me. My C4a has been at 57,000 for years. I am inflammation run amok.
And I have no tolerance for carbs, so the anti-gliadin antibodies could be a player for me.
I am also thin with low cholesterol, but I think I'll continue CSM while I increase other detox methods. Detox always makes me feel better.
And get our house mold tested. I need to know.
This just bums me out because it adds a level of complication to my treatment that I don't want to deal with. 20 years is enough!! I want a life!! So so so sick of all this!!!!
posted
Boxer Mom, You and I have the same exact genes. I had a feeling it might be mold for you too. We have both treated long and hard, and when I get a mold hit it is like Babesia symptoms.
We did major house remodeling last year, I've been feeling really good so when I get a mold hit now it's really obvious. Yesterday, went to a mall 30 miles away because the one that is close has mold. Well, that one does too.
This is a really hard way to live, I'm no going to lie to you. I can't go to so many places, can't eat gluten either. I cried about the mall thing last night, there is just so much I can't do. It's hard to adjust to this.
Posts: 845 | From Northeast | Registered: May 2011
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posted
I haven't been tested for the gene, but I must be a bad detoxer--even small amounts of abx cause me to herx. The antibiotics seem to be working, it's just that I have to take them in such tiny amounts, and I spend so much time being sick from a herx.
Well, recently I started saline enemas (as part of my parasite treatment) and WOW, all of a sudden I'm feeling better, have skipped my usual herx days and am even starting to think of increasing my abx.
Try enemas? Along with all the other detox things you do (I do saunas, charcoal, DE, massage, etc.)
Posts: 261 | From Nebraska | Registered: Jan 2010
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
When originally tested, my C4a was sky high-
There is no proof this is from mold only! It is an inflammation marker, obviously can be from chronic infections.
-------------------- 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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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- This herbal formula addresses porphyria, which is likley an issue (even if not genetically but "secondarily") for anyone who has toxicity of any kind -
- and much more likey that there is a porphyrin overload for anyone who has trouble metabolizing toxins for ANY reason. -
and also those taking any Rx requires the Cytochrome P-450 liver detox pathway (as do most drugs do).
It's of note that those on the CAP (combined antibiotic protocol) for Cpn are instructed to address "secondary porphyria" - see article in the Porphyria thread.
Hsin Kuang Herbal Store and Clinic (Est. 1956)- London, UK
------------------
More about porphryia, see the "secondary" article first relating to Cpn treatment. Everyone on the Cpn protocol ( www.cpnhelp.org ) is instructed to also address porphyria.
See the "Secondary Porphyria" thread first. Although I would change the kinds of carbs suggested in that article, it's vital to avoid low carb diets or fasting.
Many good links here -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I'm sure you know all of this but for others in a similar position, there may be something here that will serve as a key of some sort (although, in addition to key liver support, porphyria support goes the important step further):
LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Did you test positive for the HLA gene that has you not able to detox mold toxins, but ok with Lyme ones? That's what I have as well. You're on the CSM already so I would say keep going with that. It seems like it helps some folks but takes quite awhile. Consider calling the pharmacy (call Clark's compounding and ask about it) and getting some info from them. I also don't think it's a death sentence.
BTW Dr H northeast said that 25% of patients get better with mold treatment...or wait, was that metals?
Posts: 3528 | From US | Registered: Apr 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Here are the notes I took on Mold Toxicity, the Dr. S explanation "for dummies." There may be something here that helps you.
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. Neil Nathan
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. (Sorry, I missed the word here.) Going to high altitudes make these folks feel better, so that is the clue to this abnormality.
ERMI test kits are available on line to test your home for mold. Dr. Shoemaker 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.
Final word: mold toxicity is treatable.
Posts: 9931 | From Maryland | Registered: Dec 2007
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beths
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Member # 18864
posted
I have the "bad HLA gene". And I am getting better. I found out a few weeks ago there was mold in my basement- really high levels! I work out down there!
I do take phytosterols (instead of cholestyramine) as my stomach is pretty sensitive. I also had my basement "fixed"- drywall removed, rugs cleaned etc.
I don't think the bad gene means you can't get better, but more attention to detox is required
Posts: 1276 | From maryland | Registered: Jan 2009
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