posted
I am too sick to read thorugh all this... Can soemone PLEASE give me the gist of it....
What test do I need?
What remedies/meds/supps help to detox mold out of the system??
I BELIEVE that this is the BIG piece to my puzzle... I KNOW my house has mold and my illness started while living in a moldy/humid/damp basement apartment.
Any help wold be GREATLY appreciated!
Thank you
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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I'm so glad you're looking into this. I believe this could be a huge problem for you too.
I'd start with going to home depot (or a place of the like) and getting a 10 dollar mold plate for each room in your house. It's so important to test your environment, especially if you are bedridden or unable to leave your house.
Then I'm sure someone in this thread could explain to you where to go from there based on the results. You could have the mold sent in to be tested, or you could have someone come out and inspect the house. I think it's best to take things step-by-step though because it's all so overwhelming when you can barely think past breakfast.
I'd also recommend the esoterix IgE and definitely IgG mold exposure and sensitivity test. That'll show if you you're sensitive to mold and if you've had long term exposure.
I hope you are well. Tons of love....
Posts: 710 | From West Coast | Registered: May 2008
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Thank you for replying!! I agree... step by step... Where can I get this test and can my LLMD or LLND order it?? If so, where do I tell them to order it from??
Having a hard time being on the computer for more than a minute at a time... EMF's REALLY getting to me..
Thank you
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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posted
This is a very pertinent topic. My daughter decided to clean and empty the basement a few days ago.
I knew it had that basement smell, but not necessarily moldy (dusty and dirty for sure). We now have stuff all over the house and it's definitely affecting me.
What I'm wondering is if the musty smell bothers you more than others around you. No one else seems able to smell it like I do. Sometime I have to cover my nose because it seems so strong.
When I go to my moms I smell it at times when no one else does also. My mom says my dad used to smell it when she didn't and he had some of the same physical ailments that I do.
Anyone?
-------------------- "His faithful love endures forever." Psalm 136 Posts: 189 | From MN | Registered: Dec 2007
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emla999/Lyme
Frequent Contributor (1K+ posts)
Member # 12606
posted
Shandy,
Except for the bull's eye rash, toxic mold/fungi and their mycotoxins can cause symptoms and health problems that are nearly identical to those caused by Lyme Disease.
At the very least I would recommend that you get an IgG antibody blood test for toxic molds/fungi such as Aspergillus, Penicillium, Stachybotrys etc..
An elevated IgG would mean that you have been exposed to toxic mold in the past or that you are currently experiencing ongoing exposure to toxic molds.
Also, since toxic molds are capable of producing mycotoxins you may eventually also want to have your mold mycotoxins levels checked via RealTime Laboratories.
Mold/fungal mycotoxins are EXTREMELY toxic!!!!!!! And mycotoxins also suppress the immune system.
RealTime Laboratories can also perform fungal cultures on your blood to determine exactly if and what kind of fungus is in your blood. Plus they can test for indoor molds and indoor mycotoxins.
posted
Hi Everyone, been too sick to stay up on this thread. Started mold treatment and beginning the journey back. A myriad of things are happening with symptoms. Some slightly improving and strange odd ones erupting. Even things I didn't have before but not sure they are related. Too soon to know.
UNEXPECTEDCHILLS, sounds like you could well be dealing with a mold issue. As others have said start with the Esoterix Mold Panel. Call Esoterix (1/800-444-9111)<owned by LabCorp I think as that is where my bill came from and is where you go to get blood draws done> to find out the right regional area test panel number for your area.
You may need to be persistent with whomever answers the phone; even ask to speak with a lab technician if the person who answers doesn't know. The range of customer responsiveness varies based on whomever answers the phone there. So, keep calling until you get someone who will get you the information.
My LLMD ordered the test. In his opinion the only relevant panel is IgG or it is the only one he cared about. Another doctor (LLND) ordered both the IgE and IgG. The main one for mold reactivity is IgG as the IgE relates more to your body's sensitivity and the IgG relates more to your body's actual exposure.
My LLND said that the IgG levels start to come down within 3 months of being removed from the source of the mold (along with treatment). In other words, levels don't stay static just because you are exposed. If you are re-exposed levels will spike high again. Same is true for C4a levels.
Based on individual body chemistry people tolerate different levels. For example, my C4a was over 9800 (anything over 2800 is high). I developed Parkinsons~like tremors and voice trembling which was my body screaming through my central nervous system for some relief.
When I reached that stage they said I had to start treatment asap. I had been delaying starting treatment because I am now displaced from my house in a hotel while my house undergoes professional mold remediation.
My doctor said she has had other patients with C4a at over 30,000 where they did not exhibit that Parkinson~like symptom. But, I think other things were also contributing to those symptoms for me. This has been extremely stressful and caused my husband to have a meltdown and in therapy. After 4 yrs of me being bedridden and then to learn all this with mold and the house. It was just to much. A person can only handle so much pressure.
I hope others are also evaluating the possibility of mold in your symptoms. I think many of you have clinical diagnosis of lyme could actually have mold sickness.
In my case, I was told by 3 different very lyme literate doctors that my sickness was lyme disease and babesia duncani based on Igenex positive tests on both. However, my PCR test was negative and my urine confirmation test was negative. So, I really think that means that my lyme and babesia diagnosis were actually clinical diagnosis.
My instinct told me something more was wrong. Like a dog with a rag I keep pursuing mold testing. Quite frankly because I had been told by a medical intutive that my illness was primarily caused by mold.
Not sure what (if anything) this changes in their diagnosis of lyme and babesia for me, but all have said that it should be MUCH more successfully and easily treated after the mold issue is resolved.
So, anyone who has treated lyme for years and is still sick or anyone with a clinical only diagnosis, PLEASE evaluate mold risks in your home and/or work place. The symptoms are the same!!!
The Esoterix test is a starting place, but other tests are important as well. If you are paying out of pocket I'd start with Esoterix. The price varies vastly depending on what doctor orders the test. That was a shocker. Through my LLND the test was $600 and through my LLMD it was $120!! Just so you know.
Other tests are the C4a, HLA DQB, MMP9, MSH, VIP, VEGF, LEPTIN, also the C3a complement. However, your doctor will need to know how to interpret the tests. Maybe some experienced folks here can help. Some of the testing values are in Mold Warriors a book by Ritchie Shoemaker, M.D., also discussed in mold books by James Schaller, M.D., but the Shoemaker book is the most comprehensive information in one book. Schaller's info is spread out among several books.
As for testing. I started with the Home Depot gravity plate testing discussed in detail earlier on this thread. I subsequently had air spore trap testing done by a professional remediator (through a lab) and where I learned my house has stachbybotrys. That did not show up at all on the gravity plate tests, which are not as accurate as air spore trap testing. Just so you know. However, gravity plate testing will give you a snapshot look at things for far less money.
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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posted
FAITH6, I would say yes regarding your sensitivity. If you are smelling the basement that is your first signal.
All of the books and DVDS I have say first go by your nose. You will smell it before you can see it. Some times you can't see it at all. It is usually BEHIND walls/floors/ceilings.
In fact many of these sources say if you suspect it but can't quite tell on the smell, leave for 2-3 days or a week. Let your nose clear. When you return your nose will alert you to any dangers it senses for your body.
You are likely smelling it because you might have the genetic risk factor. Others who don't have the factor would not smell it as early you do. Make sense?
The problem is that once you have long term exposure is that your nasal passages become so overwhelmed and perhaps swollen that you may no longer be "detecting" well. That is what has happned to me. I can barely breathe through my nose at all and have predominantly become a mouth breather. Mouth breathing alone induces or exacerbates some of our symptoms as it does not oxygenate the body the same as breathing through your nose!!
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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posted
I have a few questions about this..wow, it's so overwhelming.
I had my house tested with the airtrap method. They told me it was okay because the levels outside were higher than inside, but I had all but one kind of mold in my house. I don't have any that you can see on the walls or ceilings.
The basement is wet and damp though. I didn't have that tested but the guy that came and did the test visually checked it out and said he didn't see any problems.
My LLMD ran the gene tests for mold and lyme and said I have 2 for mold and 3 for lyme. I have no idea what that means. Other than I have trouble detoxing.
He also did allergy testing which showed nothing. My C4a was almost 50,000 last summer, the last time I had it tested it had dropped to about 28,000 I think, but that's still extremely high. He ran the c3a which he told me is specific to mold and that came up normal.
My PCP tells me that my problem is the mold in my house and I need to get out. Unfortunately I have no where to go.
Does anyone know anything about the c-tests and if my c4a could be that high because of mold? No one with lyme seems to have numbers that high.
What does the gene testing mean? My doctor didn't tell me specifically.
What scares me is my cognitive stuff. I hope it's not from mold because it sounds like that may be permanent. That scares me to death.
I just don't know what to do. I feel so much better when I'm not home..wish I could move out!! Thanks
Posts: 86 | From new york | Registered: Jun 2008
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posted
My LLMD says C4a is specific to mostly to mold but can have some lyme influences I think. Your levels are EXTREMELY high. My LLND who treats lots of mold cases says the highest she has seen is 32,000. Anything over 2800 is high.
So, YES, you have a serious mold issue in your house. Your PCP is right. The guru doc on understanding all of this is Ritchie Shoemaker, M.D. in Maryland. He has book, Mold Warriors which much of the testing information is discussed in detail. He also has free youtube videos discussing a variety of things on biotoxins/mycotoxins. You might want to google and read more.
With C4a that high you might have the mold susceptibility genetic risk factor testable through HLA DQB testing through LabCorp.
What that means is whether you inherited the mold susceptibility risk factors from one or both parents. That increases your risks.
However, I also think it depends on how your symptoms are effecting you. For example, I have the double genetic factor (from both parents), and at almost 10,000 C4a. I have been bedridden for the better part of 4 yrs.
I think symptoms may hit harder for those with genetic risk factors, but not sure about that. Still learning the nuances of it all myself. There is a lot to learn.
What this could mean for you however is that most of your illness/symptoms might be mold, not lyme. Or could be both? The symptoms of lyme and mold illness are the same. So, if your lyme diagnosis is a clinical diagnosis it could very well mean that you don't have lume at all, but might exclusively have mold illness. The symptoms are primarily indistinguishable for the most part.
At a minimum, it means that lyme treatment will not be as effective until you resolve your mold. Mold substantially suppresses the immune system and will present cancer risks, especially if your CD57 NK count is low. NK cells are lowered by lyme and mold.
Mold sickness is treatable, but takes a long time. See my post above on treatment options my doctors are trying for me.
If your basement is wet and damp, therein is likely your problem. Mold loves and needs moisture. In confined dark moist areas it thrives, and indoors develops into toxic mold that can make your family members extremely sick. At highest risk are children, elderly, and immune compromised individuals. Certain molds can cause cancer in the brain, kidneys, liver, and bone marrow. It can be deadly. I hope you address it.
Your C4a levels will not come down until you are removed the source of the mold and begin treatment. Over time once removed from the source C4a can lower on its own, but will take much longer. Even with aggressive treatment my doctor told me to estimate 2 yrs.
Sorry you are dealing with this. I know it is terrifying to hear this, but better to know than to not know! Educate yourself well, lots of great information contributed by many on this thread. It is probably the best learning source you will have to help you orient yourself to risks and options to consider.
Ask questions and several of us will try to help you if we can.
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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How do you treat mold illness?? You said you have been treating... can you describe some of those treatments?
Thank you!
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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I read somewhere ca3 is for mold and ca4 for brain swelling. This is all so confusing.
Does the exoterix test tell if you have current problems with IgE responses which indicate ongoing exposure in envirmoment and or in the body with the toxins?
Unexpected, I think modifilin is one thing that has been recommended on this thread for mold toxins.
Posts: 861 | From USA | Registered: Dec 2008
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posted
Hopefully someone more literate in C3a/C4a can help us to better understand these.
I was told C4a is more mold related, but I have been through so much these past few weeks, please don't trust my memory on it. I will ask my doctor to explain in more detail at my next visit (6 wks) and post what he says here. He is in direct ongoing contact with Ritchie Shoemaker M.D. (author of book, Mold Warriors) so I think we can probably rely on what he says about it.
UNEXPECTEDCHILLS, yes I will post what they are doing for me with treatment. I hope it helps others to better navigate their own possible treatment options.
R62, the mold antibody tests that my LLMDs focused on was the Esoterix IgG mold panel. Neither doctors felt that IgE was significant as it does not relate directly to exposure to mold like IgG does. One doc I think only ran the IgG panel. If so, then that may explain some of the differences in costs between the two doctors with the same test. I am too brainfogged to resolve how that varied so greatly, and doctors and labs hold the testing/cost partnership agreement so close to the vest that neither reveal it enough to know that the doctor is making money on the labs. I didn't know that until I learned it here on this board from posts by others.
Esoterix has a regional panel for each area of the country depending on where you live so you need to contact them and find out what the test panel number is for your area of the country.
You may need to be persistent and ask for a lab technician to get through and get the right information. Do not assume the person who answers the phone is going to know or be correct in what they tell you. I have found that the people who answer the phone there are not the brightest bulbs in the box if you know what I mean. It isn't like calling Igenex where the person who answers the phone can reliably answer your questions. Or, it hasn't been on the two occassions I have called them anyway, but I could have called close to lunch when they were on minimal staff schedule, who knows. Just be aware and know that there IS a regional test number for your area. Keep calling and talking with different staff until you finally connect with one who will take the time to look it up and give it to you. The Esoterix lab number is 1/800-444-9111. You will need a doctor's order for the lab draw which will be done at LabCorp and the billing is through LabCorp. One of my blood draws were arranged with a blood draw at another facility locally where we refrigerated/overnighted the shipment to Esoterix so many things are possible though out of their customary practice.
Be armed with the knowledge that the test panel number exists, and be insistent about connecting to someone who knows.
My experience in talking with staff there is they will be adamant about information given to you and be wrong about it. For example, one of my doctors had given me the Esoterix lab blood test kit with shipping instructions and written instructions for the blood draw and processing.
I called Esoterix lab to verify about the overnight shipment and that shipping on a Thrs would be okay and that someone would be there on Friday to receive it. Some labs aren't and say ship only M-W. The staff person at Esoterix did not listen to what they were being asked at all and instead adamantly told me I could not ship at all and that blood draws were only possible through LabCorp where it is a direct shipment process. She said under no circumstances would they give the blood draw kit out to patients. I was sitting there holding a blood draw kit in my hands as I was listening to her tell me that it was impossible. See what I mean?
The doctor who gave me the kit deals in chronolically ill patients who are not always near a LabCorp facility. She has arranged with the lab to have blood draw kits shipped to her for patients to take to any blood draw facility and direct ship to LabCorp. That is not uncommon. All labs do it (Genova, Doctors Data, BioHealth) Many of us are given multiple lab kits to get courtesy blood draws done and shipped to the lab for testing.
But this staff member adamantly told me it was not possible when it was. So, know there is a test panel for your region and hammer away until you find out what it is. I think the problem seems to be that Esoterix is not used to dealing directly with the public. They are not a service feature lab like Doctors Data or Genova who deals constantly with public inquiries. Esoterix deals mostly with staff from doctor's offices. So, that is where the communication disrupt is happening. They aren't geared to answering public inquiry type questions. Most doctor offices who run these tests already know what their regional test panel number is, so they aren't getting many inquiries about that kind of thing.
In my case the person who answered the phone both times seemed to be more of an administrative processing staff person.
Yes, Modiflan is one the strongly recommended treatments by Dr. Mary Beth Short-Ray. Though I have not yet incorporated it into my regimen. It is a brown seaweed extract, known to be used in eastern medicine for detoxing the body. You can buy it in asian markets to put in soups/stews as well. It has no particular flavor to nasty tasting according to some; tastebuds vary. I am wondering if it might not be possible to take the dehydrated version in the asian markets and put in the food processor or a blender to finely chop/mince and then just sprinkle it on food or use in making a tea? Though I am sure it would need to be used in small amounts. It is important to remember that we don't want to overmobilize toxins!! You want to get them out but not stir them up at a level that your body can't get out through urine/stools/sweating/detox baths. Especially since some of us have methylation pathway blocks!!! That means we can only detox eliminate small amounts at the time.
If you over do it, then you overmobilize toxins, most significantly heavy metals, which are known to be pulled from tissue from other body areas and when can't be eliminated risk resettling into the brain and can cause the onset of Alzheimers and other disorders. So, you want a slow, safe toxin mobilization/elimination process that works for your chemistry. Carefully monitor your symptoms and if toxins seem to be overmobilizing reduce your process a bit. It is a bit of a delicately managed dance with your own body.
Your body will tell you and guide you in what is right and what it needs. You just need to open those communication channels and pay attention to things you may have been ignoring for a long time. I definitely did that for years which is why I am in such bad shape. I was a workaholic (as many of us probably are/were). I learned to tune out and override any body symptom feedback.
It has taken a lot of time but I am gradually getting back in tune with my body signalling system again, thank God. If I can do it, trust me anyone can. I had completely turned the switch off for over 20 years.
It has been only through the result of being bedridden that I have been forced to lay here and pay attention to body signals.
That is probably the only thing that would have stopped me and caused me to pay more attention to what is important (my body) not just what is urgent (the next meeting).
For years my body was responding to what someone else determined is constantly urgent (meetings/projects/deadlines) instead of what was really important with my body needs(rest/exercise/proper nutrition). I wish I had all that to do again. I would make much wiser decisions. Once your health is gone, so is your job, and sometimes your family as well. It is a high stakes gamble, but we don't realize that until we get like this. Until then you just keep robbing Peter to pay Paul with your body energy and hope that Peter doesn't run out of energy reserves. One day he will, and that is when it all comes crashing down like what has happened to me. It is a painful life lesson.
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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emla999/Lyme
Frequent Contributor (1K+ posts)
Member # 12606
posted
Apparently, the C3a and C4a peptides posses anti-fungal properties.
"Activation of the complement system leads to a rapid and amplified response which includes the generation of small peptides like C3a and C4a that display antimicrobial, anti-fungal and anaphylactic activity.
Here we report how these antimicrobial peptides are generated during the immune response and summarize the functional mechanisms of these intrinsically generated anti microbial peptides."
Posts: 1223 | From U.S.A | Registered: Jul 2007
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I'm still confused why my LLMD would run the c3a for mold and the c4a for lyme. I did read that Dr Shoemaker thought the c4a was more for mold.
I can't imagine how my number got so drastically high. That number almost seems unheard of.
I do have some kind of genes that show I can't detoxify mold and lyme. Not sure what they are exactly. I guess I have 3 for mold.
Scary to think that most of my symptoms could be from mold..especially since my brain has gotten so bad. I hope I could get improvement on that. Fortunately that wasn't a slow process, the brainfog hit me virtually overnight. I would think with mold it would have been building over a longer period of time. Hopefully.
Guess it's time to get out of here for sure.
Oh, and I do have a very low cd57.
Thanks for all the information..this is great!
Posts: 86 | From new york | Registered: Jun 2008
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I dont understand why the range for my complement c3 and c4 are low and my tests result are in range. The range goes a little over 100..
Those of you who have tested.. did your test give higher ranges into the 1000s or is it that your numbers are into the 1000s and the range given by quest or labcorp (mine was labcorp) is lower?
mine says (lapcorp): Complement c4 reference interval 9-36 result 26 Complement c3 reference interval 90-180 result 122
I do test to have the lyme/mold gene via shoemaker
I also take 6 modifilin a day.
Posts: 861 | From USA | Registered: Dec 2008
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emla999/Lyme
Frequent Contributor (1K+ posts)
Member # 12606
posted
You all might find this interview with toxocologist, Dr. Jack Thrasher interesting.
In that interview Dr. Jack Thrasher discusses the negative health effects of toxic indoor mold and the toxic indoor bacteria, Streptomyces, Nocardia and Mycobacterium.
I didn't even know that exposure to indoor bacteria was a problem!!
Posts: 1223 | From U.S.A | Registered: Jul 2007
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Guys and Gals,
CA4 is an indicator of inflammation. HLA measures ability to detox molds, lyme, blue algae, and other mycotoxins.
It is my understanding after reading MOLD WARRIORS that one could have abnormal testing on C4A because of lyme toxins alone and the inability to clear them.
If you have tested positive for Lyme, lyme toxicity could be the reason for your results, not mold...
Feelfit
PS, my C4A is 44,520 after 2 years of lyme treatment. I think I have a lot of toxins to remove!
Posts: 3975 | From usa | Registered: Aug 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I assume none of these tests are covered by insurance? I guess it doesn't matter as I'm about to toss in the towel on all these lab tests. It can go on indefinitely as there's always another possibility and another..
I really do wish one of my LLMDs, regular docs would've ran the HLA test on me as I've always wondered. I can't get them to do it. Some say the test has no real meaning anyway though so I guess inability to detox is Dxed on a clincial basis.
Feelfit, how on earth do you remove them all? Drink endless wheatgrass? Take 500 milk thistle capsules? Swallow a canister of Cholyestrimine? Wouldn't it be nice if they'd all say bye-bye at once?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Seek,
The HLA, C3A, C4A, leptin, MSH, testing is all covered by insurance.
I don't know about the mold antibody testing as I have not had it done, but guess that I should. I can't believe that I totally missed this thread until now!!!!!
I also can;t believe that I had a C3A result like the one that I posted and was not told about it....just found it in my labs today. I also found low MSH results. And I have the "dreaded" inability to detox molds, lyme, brown spider, ect.
The guy in FL who ordered all of this stuff, (not my LLMD) was very incomplete in both his explanations and treatment. He gave me CSM but did not remembewr doing so at the next appt.
So I am on my own, with these disturbing results and trying to figure out how to get somewhere in treatment.
It is truly a living nightmare!!!!!!!!!!!!!!!!!!!!!!!! I want to wake up.
Thanks Jam and everyone else for all of this amazing info.
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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emla999/Lyme
Frequent Contributor (1K+ posts)
Member # 12606
posted
Feelfit, the C3a and C4a peptides also posses anti-fungal properties and they can become elevated due to a fungal infection such as mold or yeast.
"Activation of the complement system leads to a rapid and amplified response which includes the generation of small peptides like C3a and C4a that display antimicrobial, anti-fungal and anaphylactic activity.
Here we report how these antimicrobial peptides are generated during the immune response and summarize the functional mechanisms of these intrinsically generated anti microbial peptides."
Posts: 1223 | From U.S.A | Registered: Jul 2007
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Can someone provide a list of ways to treat mold mycotoxis? For example someone medntioned modifilan, someone else said CMS/glucomanna.
I really don't want to have to do another consult with another expensive specialists to treat. I just want to assume I have a problem (based on Esoterix test) and start treating, you know what I mean?
Posts: 3528 | From US | Registered: Apr 2007
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I'm sick of going to all the specialists and not getting anywhere.
I think it's unfair to give you the knowledge that you have an issue with mold and/or lyme and then not provide a solution.
It's so frustrating..I've tried everything. Besides moving, that's next.
Posts: 86 | From new york | Registered: Jun 2008
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emla999/Lyme
Frequent Contributor (1K+ posts)
Member # 12606
posted
CD57 and Sarah,
Here's what I am currently doing to remove the mycotoxins from my body.
I take the following mycotoxin binders.
Cholestyramine(CSM): 1 packet at noon and 1 packet at bedtime.
Activated Charcoal: 1 gram at noon and 1 gram a bedtime.(Sometimes I take even more than this).
ZeoGold (Zeolite): 1 capsule in the morning and then 1 capsule at in the evening. (Sometimes more when I can afford it).
Psyllium Husk Fiber: 1 or 2 teaspoons daily.
Sometimes, I also take some Bentonite Clay with the CSM and activated charcoal.
I am also trying to limit my daily exposure to mycotoxins.
Our diet is a very common way for us to be exposed to mycotoxins. For example grains are often contaminated with mycotoxins. So, I am on a "No Grain" and sort of a low carbohydrate diet for the time being.
I also try to avoid eating meat from animals that were grain fed. I try to eat fish or meat from animals that were "grassfed".
So, I am trying to follow the anti-fungal/ anti-mycotoxin diet described in the book "The Fungal Link".
Also, if you have toxic mold in your home then you would most likely be exposing yourself to mycotoxins everyday. So, if possible then you should try to remove yourself from those mycotoxins or remove the fungi and mycotoxins from your home.
To kill the fungus within my body I take the drug Sporanox (Itraconazole): 1 capsule twice daily. (Taken a few hours away from the mycotoxin binders.)
I also take between 1,000 - 2,000 mg of EGCG daily. EGCG is a dietary supplement and it is also found in green tea. It supposedly makes the anti-fungals work better. EGCG inhibits the Hsp90 protein in fungi.
I also take various other nutritional supplements such as vitamins, minerals and herbs but listed above is the "core" of my anti-fungal and anti-mycotoxin protocol.
posted
When you say one SCOOP of CSM... how much is that?? Mine come in packets....
Also, what brand of EGCG do you use?? i have been drinking a lot of Match Green tea....
Thank you for all of this VERY useful info.
I aslo was looking at old bloodwork and my C4a was high... I also have very high levels of CRP inflammation and My WBC's and NEUTROPHILS are ALWAYS high... I only had one normal test for those in 2 years... so I have chronic high WBC and Neuts... also I just had an elevated Basophil which I never had before... My body seems to be in some kind of allergic/fighting mode constantly.. like an autoimmune.. I also have autoimmune markers... so i start to wonder if what I have is autoimmune or LYme>>>
OR lyme and MOLD turning on the autoimmine???
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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emla999/Lyme
Frequent Contributor (1K+ posts)
Member # 12606
posted
UnexpectedIlls,
I am sorry but I meant to say packet because my Cholestyramine comes in packets as well. It's the aspartame free kind.
The brand of EGCG that I am currently using is Teavigo. At the dosage that I am currently taking Teavigo is rather expensive though. So, I am looking for a cheaper brand.
Hsp90 protein inhibitors help anti-fungals work more effectively:
quote: I also have autoimmune markers... so i start to wonder if what I have is autoimmune or LYme>>>
OR lyme and MOLD turning on the autoimmine???
Maybe it's a combination of Lyme and mold.
But it can be difficult to know what's truly causing what because Lyme and fungi and their mycotoxins can cause very similar symptoms.
Posts: 1223 | From U.S.A | Registered: Jul 2007
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
As we know, an internal mold problem can be the result of a moldy house.
I have had good success clearing out mold.
First of all we removed all obvious mold from the house. That's a big job in itself, and different with every situation.
Then we left the house for several days. We ran the heaters to dry everything out, then ran a professional strength ozonator 16,000 (cost $400.) to kill and oxydize the remaining spores, along with a strong hepa filter (cost $500.)to pick up any unoxydized mycotoxins.
We did a section of the house at a time to maximize the ozone strength, and repeated each section to minimize reinfection.
Severely affected items of value were placed in a plastic trunk and ozonated for an hour. Bookshelves with books from basement storage were covered with a tarp and ozonated an extra time.
Eighty to one hundred hours of 03 later, it worked like a charm. After that my health and energy improved dramatically, even regardless of the month of rain we have had here.
Big job, but it beats throwing away all our stuff, moving out and starting over, or scrubbing every single item you are keeping, or living with the problem and the illness!
I also had good success with taking an air sample in a glass of water for a week, and making a homeopathic remedy from it.
I don't know all what strains of mold and mycotoxins are in there, but I know I was treating my body for all of them.
Good luck to you all in your recovery!
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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posted
are then any homeopathic remedies for mold????
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
A good homeopathic combination is FNG from Deseret Biologicals. That's one of my favorites, but I'm sure there are many others as well.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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CD57
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Member # 11749
posted
Wow, emla/Lyme....that's intense. Are you....constipated? Sorry if that's too personal. How did you get around this? CSM makes me totally blocked and I hate the way that feels.
Anyone heard of modifilan, a la Dr Mary Beth Short Ray? JAM had a consult with her and she promotes this on her website....it's seaweed.
Posts: 3528 | From US | Registered: Apr 2007
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emla999/Lyme
Frequent Contributor (1K+ posts)
Member # 12606
posted
CD57,
At first the CSM and the charcoal caused me to have a little constipation. So, I started to take some extra fiber and now I have at least two bowel movements per day.
I also eat loads of vegetables and drink a lot of water everyday. Plus I take a lot of Vitamin C. So, those things may also be helping me to not have any constipation.
I have heard of the Limu seaweed product but I have never taken any of it. So, I can't say whether it is helpful or not.
Posts: 1223 | From U.S.A | Registered: Jul 2007
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Would taking all these binders during the day cause an issue with the abx?
I wouldn't want to draw out the meds as well as the toxins. It's so hard to fit everything in during the day..not to mention you have to eat too!!
Posts: 86 | From new york | Registered: Jun 2008
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posted
can you take all these binders while on abx and herbs?? What is a good source of modilifin?? and... Is 2 packets of CSM a day enough?
Also, has ANYONE seen improvement in symptoms?
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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posted
can you take all these binders while on abx and herbs?? What is a good source of modilifin?? and... Is 2 packets of CSM a day enough?
Also, has ANYONE seen improvement in symptoms?
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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posted
CSM is much cheaper if you buy it in bulk and not little packets unless you have insurance that covers your Rx.
Thanks JAM for this thread.
Too much CSM can mess with your bile and make you cold all the time. If it was me I would try a more natural binder instead. I did CSM and wished I had not.
Posts: 42 | From the woods | Registered: Jul 2009
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What the Primary Care Pediatrician Should Know about Syndromes Associated with Exposures to Mycotoxins
Ruth A. Etzel, MD, PhD
Abstract
Disease associated with exposure to mycotoxins is known as the ``Great Masquerader'' of the 21st century because of its complex natural history involving different tissues and resembling different diseases at each stage in its evolution.
It can present with a variety of nonspecific clinical signs and symptoms such as rash, conjunctivitis, epistaxis, apnea, cough, wheezing, nausea, and vomiting.
Some cases of vomiting illness, bone marrow failure, acute pulmonary hemorrhage, and recurrent apnea and/or ``pneumonia'' are associated with exposure to mycotoxins.
Familiarity with the symptoms of exposure to the major classes of mycotoxins enables the clinician to ask pertinent questions about possible fungal exposures and to remove the infant or child from the source of exposure, which could be contaminated food(s), clothing and furniture, or the indoor air of the home.
Failure to prevent recurrent exposure often results in recurrent illness.
A variety of other conditions, including hepatocellular and esophageal cancer and neural tube defects, are associated with consumption of foods contaminated with mycotoxins.
Awareness of the short- and long-term consequences of exposures to these natural toxins helps pediatricians to serve as better advocates for children and families.
Division of Environmental and Occupational Health, George Washington University, School of Public Health and Health Services, Washington, DC
Parts of this review appeared previously in reference 16 and in Chapter 16, ``Mycotoxins and Human Disease'' in Microbial Toxins:
Molecular and Cellular Biology, edited by Thomas Proft (Norfolk, England: Horizon Bioscience), 2005, pp. 447-472.
PII: S1538-5442(06)00059-9
doi:10.1016/j.cppeds.2006.05.003
� 2006 Mosby, Inc. All rights reserved.
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CD57
Frequent Contributor (1K+ posts)
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posted
Bringing this up to see if there is more info?
Posts: 3528 | From US | Registered: Apr 2007
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posted
Like CD57, I'd like to hear more from everyone here as well.
I've begun treatment with Sporanox and I've never felt so ill in my entire life. I think this is seizure activity?
So I'd love to hear from anyone who's been through treatment and I'd like to know what you felt, if you don't mind sharing.
Posts: 710 | From West Coast | Registered: May 2008
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posted
I wanted to share my thoughts about the issues in this thread and what some of you have gone through, and what I have gone through. I wish I could have seen this 2 years ago. For 2 years I have suffered like many of you have and I think it has been unnecessary.
Mold is probably 1/3 of the way into it. He talks about a propolis vaporizer that will take all toxins out of the air. I just ordered one today and can update you on if it makes a difference or not.
Now to me..
When getting tested with zyto my stressers are 1. emf, 2. chemical exposure, 3. bacteria.
I have been treating EMF, Bacteria and now working on what I think is the chemical exposure, or rather, MOLD.
EMF Waves
EMF disrupts melatonin, serotonin, nervous system, nerve and tissue regeneration and healing, dna, rna, and multiplies biotoxins.
You can watch Dr. K's videos above to learn more about EMF.
I do computer work for a living - I am around computers all day. Including many electronics in my apartment. It's like I am living in a microwave.
To help with this I bought universal chips from bioprotechnologies.com and applied them to all my electrical devices.
Since then some symptoms like tingling and burning has subsided to a large degree and I feel I am healing faster. I have felt a very noticeable physical change, for the better.
BEFORE WE GET TO MOLD - DO NOT MAKE THE SAME MISTAKE I MADE. FIND OUT IF YOU HAVE DETOX PROBLEMS BEFORE ANYTHING! SEE BELOW:
Sulfur Detox Problems
Another important factor which has been making me sick that I want to stress is sulfur.
Through trial and error and then eventually ART I found out I have an issue with detoxing sulfur. This means I cannot take certain compounds that contain sulfur, which many on here are able to take and suggest to you to take! I was trying to treat some symptoms for 1 year! that were caused by me taking supps and food containing sulfur!
Sulfur compounds that make me sick: - Glutathione - nac - epsom salt - bananas - garlic - alphia liopic acid
Examples:
One time I had a glutathione IV and ended up in the er as I felt so sick and toxic and could not stand being in my body for one minute.
Another time I tried to do a liver flush and took epsom salt and I think I was close to having a heart attack, I was ready to call the paramedics.
Treatment so far
TerryK has helped me with learning about the issue. I take Nutramedix Sparga, and RNA a polysacharride sugar from holistic heal and it seems to help.
I am doing a methylation detox panel next week from holisticheal.com to receive a specific diagnosis of what is wrong with my detox capability so that I can correct it through possible supplements.
Some Back Story
I had been living at my parents since last January. I had my own apartment. Aug 08 I came home from a trip to europe.
Upon returning, I had panic attacks almost every other day ( it could have been the issues with sulfa). Like Jam I could not for the life of me breathe through my nose... it was SOOO inflamed.
My Symptoms:
- fatigue and intolerance of exercize - intolerance to alcohol and caffeine - panic attacks - brain fog - skin paleness - stomach paralyzed
This is when I started learning about lyme and babesia.
I tried taking arteminisin, garlic, etc. all of it made me very sick (The Sulfa). So I ended up moving to my parents to help deal with my sickness.
After moving to my parents: - unable to eat - lost 60 lbs - became bedridden - stop working full time
Keep in mind I am 21 at the time, and as my Dad had a tragic event a year before I was financially responsible for my family (4 other people).
Doctors were unable to help me!
What has happened during the last 30 days
1. Address sulfa - 20% of my symptoms cleared 2. Address emf - 20-30% of my symptoms cleared.. still watching the effects
And now...
MOLD
I found this thread about a week ago.
And sure enough, my parents have BLACK MOLD growing in their home!
6 Days ago I moved back into my apartment and away from the black mold
Improvements since moving home away from the mold
- able to walk - new energy - mental clarity - better digestion - feel more like my old normal self than ever!
But I have not escaped mold altogether! there is some mold in my apartment!
- We tested my apartment for Mold, 3 rooms tested were positive - My bedroom was the worst - Both me and my Gf get sick immediately after entering the most infested room (we experienced this yesterday)
Why I think mold has been an issue
Traveling
Whenever I spent time away from my apartment or my parents home, like when I drove out to see dr. f in az, or spent time at my gf's dad's house, I felt fine, almost cured... then I get back home and its like I get slammed with a pile of bricks.
My Bedroom
Both my Gf and I were watching tv in my bedroom yesterday. When we were ready to go eat dinner, neither of us could move. It felt like we had been hit with a pile of bricks. Leaving the apartment lets us feel better.
She will feel sick for 24 hours after if she spends the night.
My Apartment
If it makes me sick now, then it was making me sick ever since I have lived here.
This thread and my plan
I am now all about treating mold. I feel like I am so close to gaining my life back.
What I have done so far - Run propolis vaporizer that Dr. K talks about in video - Run two ultra violet ray hepa filters - Get results on mold test plates - Get rid of mold if I can find any - Cover vents with Merv 11 filters and run fan on ON to stop recirculation of spores - Scrub everything down with borax - Use hepa filter vaccum - Take binders
Since moving home
I can walk longer and further, have more energy, better digestion and can think clearly. This is all too surreal!
Thank you!
It was all because of the people who have shared so far in this thread, 2 years of suffering and now I feel like there is hope.
[ 09-13-2009, 04:01 AM: Message edited by: bigdreams87 ]
Posts: 73 | From ca, usa | Registered: May 2009
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posted
Thanks all for this great information! I'm just starting to read up on Mold along with outher toxins! Jam338 - it is so good of you to take the time to communicate your experience and information. I hope you will fully recover and be well again. -peedie
Posts: 641 | From So. CA | Registered: May 2008
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emla999/Lyme
Frequent Contributor (1K+ posts)
Member # 12606
posted
Dr.S and his video interview about mold and biotoxins.
Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Up for research... Thanks for putting the info here on LymeNet to All involved!!!
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I just found this product. EPA certified mold killer, non-toxic to humans. It crushes the mold. Personally I would still wear a mask because of exposure to mycotoxins.
I called the company and they said it will discourage mold growth if a light film is left on after you scrub the mold off. They also said that it will go into wallboard or porous surfaces some but will not go in far enough if the other side of the wallboard has mold too.
Apparently you can buy it at home depot, lowes, ace hardware etc..
I really like the sounds of this product because it is EPA certified as a mold killer AND it is non-toxic. You can use a fogger to disperse if you need to.
Edited to add: You would want to use a special mask N95 (I think that is the right one). Also, if you are dealing with really nasty mold, please do research and protect yourself and your house from further contamination.
In my reading, it seems important to remove porous material rather than just clean. This is because the mold roots go into the walls etc.. You can't kill them from the surface from what I've read.
I bought his e-books. An amazing amount of great info. They are very helpful for figuring out how to discourage mold and many other tips about how to get rid of it. How to protect your home from mold from the dirt floor basement and throughout the house. Home recipes. Legal info. Lots of other info too. Kind of a cheesy, sales oriented site but good information none-the-less. I have no financial relationship to them.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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emla999/Lyme
Frequent Contributor (1K+ posts)
Member # 12606
posted
For those interested.....
The documentary film, "Black Mold Exposure" is now available on DVD. That DVD can be purchased at the website down bellow.
Imagine becoming so sensitive to almost everything you're exposed to daily like common chemicals, furniture, foods, and pollen that it makes you so ill you can't function. You must isolate yourself from others. You become unable to work, the doctors don't believe you, and neither does your family.
You're mocked and you struggle daily to maintain your surroundings and health. Watch this entertaining and shocking film as filmmaker Michael Roland Williams chronicles the agonizing struggle of those who have endured after being exposed to toxic mold.
Most are still overwhelmed with debilitating symptoms years after exposure, while doctors, lawmakers, and attorneys take sides and dismiss their claims.
Black Mold Exposure follows Michael Roland Williams, filmmaker, and Karen Noseff, founder and designer of Fortune Denim, struggling to regain their livelihood and well-being after they were unknowingly exposed to high levels of various molds that had infested Karen's apartment.
The entire 264-unit apartment community was evacuated and closed indefinitely. Michael and Karen claim to have developed allergies and sensitivities to virtually everything, causing them difficulty in finding ``safe'' housing as well as numerous other bizarre problems that have continued over the last five years.
A growing number of people from all ages and walks of life claim mold made them ill while physicians, lawmakers, and medical associations dispute the validity of these claims.
Most of the symptoms of those claiming illness from mold can be caused by, and diagnosed as, any number of other illnesses. There are no standardized methods to measure what molds, at what exposure levels, over what period of time, might cause any given person to become ill.
BLACK MOLD EXPOSURE explores the bizarre illnesses associated with exposure to toxic mold and the film participants' difficult task of regaining their health and lives in an atmosphere of political and social intolerance and disbelief.
BLACK MOLD EXPOSURE is a first-ever look into the lives of those claiming to be ill from mold and the controversial and volatile climate surrounding it.Posts: 1223 | From U.S.A | Registered: Jul 2007
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