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Just found out my c4a is over 20,000 :(

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56
I had long suspected it, but didnt think I quite fit the "type". WOW.

cd57 is at 37 too. Anyone have just lyme or whatever drive up c4a that high without a mold susceptible genotype? Or gotten better from just doing detox/avoidance with low cd57/lyme/co infections? I will be getting drawn this week for vip, msh, and hla dr, then try cholestyramine. My house just blew up with mold last week from a leak in the shower too, thats the story of my life.

Thank you sssssoooooooooooo much lisa and erik, without your writings and knowledge I would have never looked into this and who knows what my future would have been. I at least feel like I have a shot at feeling good enough to be glad that im alive. THANK YOU THANK YOU THANK YOU.
 
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Martial

Senior Member
Messages
1,409
Location
Ventura, CA
There is specific testing you can get down to your home to find levels of stach black mold, I think Dr. Shoemaker goes over this quite extensively in his site.

survivingmold.com

According to Dr. Shoemaker there is not much other substitutes do de tox toxic mold besides welchol, and chlyestorine... I wish there was but according to the tests he has done nothing really helps as much, there is a possible exception though... FIR sauna is actually quite good for this according to the various things I have seen. Dr. Shoemaker had not attempted this in his trial testing I believe, just different supplements, drugs, clays that would bind to the mold.

He says self healing is very rare in most cases of black mold toxicity, however there is a book called Mold: The War Within; written from a families experience of exposure and their full recovery using a very specific diet to starve off any mold, fungus, etc.. Dr. Shoemaker also highly suggests a specific restricted diet alongside the chloysterine or however you spell it in the CIRS protocol as well.. If you have lyme the drug will also help in removing lyme bio toxins as well.

Do you have lyme on top of mold toxicity? This is a pretty common occurrence in chronic lyme cases, I have the same issues with mold sensitivity though I do not know if I was exposed to black mold specifically. The lyme causes your body to not de tox it as well as others, also your immune system is severely compromised from infection.

What kind of treatment are you using for the lyme right now?
 
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56
I have not tested positive for lyme, yet anyways. I have alot of the clinical indications and my symptoms & reactions to supplements point in that direction Though I have only had elisa's done. My doc wants to try me on cholestyramine and then do some real testing in a month. I got very sick while living in a place that definitely had mold, that made 2 previous tenants sick. I was also doing mold remediation professionaly previously, and my health was definitely wavering at that point too.
 

Martial

Senior Member
Messages
1,409
Location
Ventura, CA
I would definitely follow through with CIRS then. I must admit I am surprised your doctor is informed of lyme toxins yet only gave you ELISA testing for lyme, Or was this another doctor?

If you are herxing from herbs and antibiotics intended for lyme then I think it is safe to say that is your issue. The sickest patients always test negative at first as well even for IgeneX testing so keep that in mind. This is because you are already using your antibodies up to keep the current infection at bay and could be overwhelmed. That is why a blood smear is far more accurate; It checks for spirochetes rather then antibodies. Never the less you could test negative at IgeneX but have the other cross strainds show up with positive values, just not enough to be CDC positive. This was the case for me as well, or you could be a lucky one and show up positive at IgeneX and get the proper insurance coverage for necessary treatments if needed as well. Testing for Lyme is very substandard FYI, though this is hard to deal with insurance issues and the like usually people start treatment on clinical presentation and symptoms if other methods come out negative, and other possible diagnosis are cleared. Grading cam be done with progress if you are improving gradually from treatments. Any signs of herxing during treatment can also confirm diagnosis, herxing is pretty unique to lyme especially with antibiotics and anti bacterial spectrum herbal treatments.

If you have Lyme and Mold toxicity then you would be horrendously immune comprimised and very neuro toxic, I hope that the CIRS protocol helps you a ton for this! :D You may just feel like a whole new person!
 
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Yeah, it was another doc. Still an integrative doc, but one that I got worse under the care of that really wasnt that good. So I searched out one that was lyme/mold literate.

He wants to do an igenex test. Im not sure a western blot is the right test for the reasons you stated, i havent settled on what test I would like to use yet, I will look into the smear. Whats the best lab for that? I am doing a live blood analysis in a couple weeks for the heck of it, also. I have herxed from natural antibiotics . I was having health troubles before my known exposures to mold that started with terrible upper back/ neck spasms which I now understand is a pretty typical occurrence. My mental symptoms are pretty darn bad, I havent felt like I have been "awake" in eight years and the depression, anxiety, ocd, brain fog, memory problems are worse than I let myself admit.

Thanks. Im hoping it helps that much. I just have to proceed with caution, I am incredibly sensitive at this point and can react to literally anything. I am beginning to prepare for a possible summer in the mountains, time will tell. Who knows, with my house now bad enough to make my not sick girlfriend feel bad, I might have to start making drastic changes right away.
 
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I would like to add for everyone that I wish I had explored this FIRST. It was actually all the other therapies that I didnt tolerate that made me as sensitive as I am and even led to some other odd problems. I have the weirdest immune system in the universe I think. I could avoided SSSSSSSSOOOOOOOOO much had I looked for and treated this first. And I dont have most of the "typical" mold/biotoxin symptoms like vision problems or skin problems or hair falling out etc.
 

Martial

Senior Member
Messages
1,409
Location
Ventura, CA
I would like to add for everyone that I wish I had explored this FIRST. It was actually all the other therapies that I didnt tolerate that made me as sensitive as I am and even led to some other odd problems. I have the weirdest immune system in the universe I think. I could avoided SSSSSSSSOOOOOOOOO much had I looked for and treated this first. And I dont have most of the "typical" mold/biotoxin symptoms like vision problems or skin problems or hair falling out etc.


Well least you are treating it now! I don't know who does the blood smear but my LLMD suggested I do it to get the go ahead for clearance on insurance if I ever decided to use IV antibiotics. Your doctor if he is indeed Lyme literate would know though. I feel ya on the psych stuff man, I oscillate between severe depression, periods of normal, dementia like states, and hyteric/psychotic type stuff, with an added pan anxiety exagerrated fear response at times. Lyme will do all kinds of weird stuff because for our stage it is well in the nervous system and brain, I had severe hallucinations and altered states of consciousness while on traditional antibiotics, I also got way sicker back then from the herxing. It was how I found I had lyme too. I was originally using them for a sinus infection and developed severe neuropathy and fatigue, and joint pain issues shortly after the medicine caused a herx.

Do you have issues with hypersomnia? this is one of my issues, I could literally sleep for days at a time and am always feeling constantly sleep deprived and tired as hell lol.

Also have you ever gotten your test levels checked? apperantly lyme can mess with the endocrine system and hormones..


I used to be a bodybuilder and was never above 11% body fat in my life, now I have really bad muscle loss and fat gain and a bit of body fat for the first time since I was an infant lol.. Actually the low testosterone is pretty frustrating and I am sure it drives a lot of my more recent symptoms. I also had very low vitamin D levels even while supplementing 4000 i.u. and working in the sun everyday! :O

Lyme does weird stuff man, I hope you are doing well on the path to recovery and wishing you the very best!

Todd
 
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Yeah, better late than never I suppose. Man, I never woulda thought.

I used to be able to sleep till 2 or 3 in the afternoon and go back to bed at 9, and still feel tired. Now im lucky if I make it to 6 in the morning and sometimes it takes me hours to fall asleep, and I dont sleep very well 99% of the time. Last night I actually slept well, for 5 hours, and it was incredibly refreshing. Sometimes I actually do better when Im dealing with something that increases inflammation, or antibody production (it seems) to be more specific. I think that was the case last night and Ive had a pretty good day today too. But I am HYPER sensitive at the moment. Its crazy. Even my sense of smell. I could smell the garden seed display at the store from 40 feet, nobody else could smell it smell it while standing next to it. Its sssooo crazy. All from the recent mold thing in the house. Im wondering how this is going to turn out.

I had my test levels checked a few years ago, 469 total, eh, but free was only like 4.5 or something. I slowly lost about 20 pounds over the first few years and definitely didnt put any fat on myself lol. My DHEA and preg levels are just below the bottom of the "normal" range. I supplement 30mg dhea topically and I feel quite a bit better on it. My vit D level was 58 last may, but I was eating alot better than, alot of pastured eggs and near raw meats and fish. That was without supplementation too. I dont know if it would still be that high. I must say for all Ive been through and as crappy as I have felt (knock on wood) my body has held up thus far fairly well. I still have some decent enough days that I can appear normal to the rest of the world. Ive even had a few miracle days from oddball responses to sup's/meds and I felt instantaneously near normal. Still in the dream like state of reality to a degree, but other than that, great. My gut has taken a bad turn for the worse recently as im reacting to near everything I eat. We'll see how that goes.

If lyme is in fact a major problem for me, man you're not kiddin it can cause weird stuff to happen. I could write a book, and Im not sure even people on pr would believe half of it. lol.

If it is an infection, Ive got it in my sights and im going to make it regret the day it infected me :D Im a persistent die hard s.o.b.
 
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56
Have you ever tried any immune modulators, boosters, or non typical anti inflammatories? If so, what was your response. I have had some pretty wild responses myself.
 

Martial

Senior Member
Messages
1,409
Location
Ventura, CA
Yeah, better late than never I suppose. Man, I never woulda thought.

I used to be able to sleep till 2 or 3 in the afternoon and go back to bed at 9, and still feel tired. Now im lucky if I make it to 6 in the morning and sometimes it takes me hours to fall asleep, and I dont sleep very well 99% of the time. Last night I actually slept well, for 5 hours, and it was incredibly refreshing. Sometimes I actually do better when Im dealing with something that increases inflammation, or antibody production (it seems) to be more specific. I think that was the case last night and Ive had a pretty good day today too. But I am HYPER sensitive at the moment. Its crazy. Even my sense of smell. I could smell the garden seed display at the store from 40 feet, nobody else could smell it smell it while standing next to it. Its sssooo crazy. All from the recent mold thing in the house. Im wondering how this is going to turn out.

I had my test levels checked a few years ago, 469 total, eh, but free was only like 4.5 or something. I slowly lost about 20 pounds over the first few years and definitely didnt put any fat on myself lol. My DHEA and preg levels are just below the bottom of the "normal" range. I supplement 30mg dhea topically and I feel quite a bit better on it. My vit D level was 58 last may, but I was eating alot better than, alot of pastured eggs and near raw meats and fish. That was without supplementation too. I dont know if it would still be that high. I must say for all Ive been through and as crappy as I have felt (knock on wood) my body has held up thus far fairly well. I still have some decent enough days that I can appear normal to the rest of the world. Ive even had a few miracle days from oddball responses to sup's/meds and I felt instantaneously near normal. Still in the dream like state of reality to a degree, but other than that, great. My gut has taken a bad turn for the worse recently as im reacting to near everything I eat. We'll see how that goes.

If lyme is in fact a major problem for me, man you're not kiddin it can cause weird stuff to happen. I could write a book, and Im not sure even people on pr would believe half of it. lol.

If it is an infection, Ive got it in my sights and im going to make it regret the day it infected me :D Im a persistent die hard s.o.b.


I see, hmm well that all is pretty darn interesting! I can so relate to the hyper sensitive sense of smells, it happens to me everytime I herx bad, I think people have mentioned this means you are not de toxing well so you are more prone to smelling harmful scents as your body is trying to keep you safe. My nose was so strong I could pick up on animal scents, literally walked by one part of my neighborhood that also functioned as a dog park and it REEKED of ammonia, so nauseating lol.

Actually this all lifted up once I corrected my methylation issues and got on Fred's methylation protocol, since then I hardly herx that hard and feel much more vigor in usual, I had pretty bad de tox symptoms though because I want really hard and fast with the protocol. I would try to take something for parasites for the gut issues, this ended up being the problem for me and cleared right up with a few weeks of treating for parasites, wormwood works great for that. It also kills any possible tapeworms which can be another big problem.

I also have the same wierd things, some days I feel cured, others 90% better, sometimes mildy okay, and others I feel like pure death haha. sounds like pretty typical lyme stuff though, I would suggest Dr. Buhner's protocol again, get something for possible parasites, and try a methylation protocol! You can get a 23andMe test and run it through mthfr.com then find what your results show comt mutations for and get on the right methylation support from there. Yeah I am on basically all of those in herbal form, sometimes it caused major herxes or de tox, but then gradually got used to it and now I feel really off If I go off of any really helpful ones too long.. Japanese Knotweed and Cats Claw alongside eluethro root seemed to be the big three helpers.
 
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Im homozygous mtrr 66 & 664, hetero mtr and shmt. Already tried a methylation protocol. I had some awesome results, but my food sensitivities and reactions went absolutely nuts and thats when my enviro sens's started. Im looking forward to getting back on it at some point.

I'll get Buhners book, I've heard good things about the protocol, thats the general direction my doc wants to take too. I think Im going to take your advice on treating parasites too, Klinghardt has a decent looking protocol. As soon as my gut can handle it.

Thanks for the words! It means alot. I thought getting test results that really showed something would clear things up and that would make things easier but it didnt quite have that impact on me. Kinda the opposite actually.
 

Martial

Senior Member
Messages
1,409
Location
Ventura, CA
Sounds like you had some kind of folate deficiency going, same thing happened to me.. I tried 400mcg of folate alongside 3,000mcg of b12 a day at first.. The very first time I experienced extreme multiple chemical sensitivities every time I took it, along side a strong flu and cold like feeling. To get over it I just had to match the doses right and add enough folate to come out of paradoxical folate deficiency.

One of the other scary things was when I was not paying attention to potassium demand and when I got healing really started I got hit with hypokalemia hard.. I didnt have the strength to get off the coach and move, I felt like I was madev of lead and my heart rate skyrocketed! Be sure to pay attention for that too!

Yeah I am sure it will help a lot! It is a great protocol as well, however disregard what I said about wormwood, take blackwalnut, goldenseal, pumpkin seed, or another anti parasitic instead.. Though its rare without higher doses wormwood can have fatal side effects and cause CNS damage.. Apparently a chemical naturally found in it can act neuro toxic at the much higher doses, 99% of people don't seem to have issues but never worth even a small chance ya know!

No problem man! I can't wait to hear about your recovery too!

Todd
 
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56
I just wanted to give a quick update.

Ive been on cholestyramine (1 dose before bed) for a week now and things are getting a little better. I have even had a couple momentary glorious breaks in the clouds and I believe if I was in an entirely antigen free environment and not reacting to foods I would probably be doing fairly good already. Mornings are still the roughest part of the day.

I had a very bad exposure (work related, in an elementary school of all places, poor kids) a couple days before I started using it and developed some of the more typical scary mold illness symptoms everyone talks about along with a couple odd ones. Thank heavens I know what it is and have started treatment. I couldnt imagine having that happen and not know.

I did a live blood analysis last week, which I found very interesting. The lady doing the test said I had a medium level of spirochetes and some form of an unidentifiable parasite, looked like a fat short inchworm. It was pretty wild watching those things squiggle around knowing they had just been inside of me and many more still are. Otherwise, she commented that my blood looked VERY healthy.
 
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Oh, and after spreading the news to the family, I got a phone call from an uncle who said that I was bit by a huge spider on my butt at age 2 and developed a bullseye rash. In Michigan, in 1985, from a spider.


viral infection is a common cause for high cd4. Im assuming c4a is the same as a cd4 t cell??

Nope. c4a is half of the compliment # 4 protein. Read the wikipedia article on the compliment system. Cool stuff.
 
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56
After using csm and minding my exposure, I must definitely say that I am a total moldie. With new clothes on a bright sunny day outside after a shower my head is relatively clear, emotionally better, neuropathy gone, pem much better, oi ENTIRELY gone, gut problems and food sensitivities much better, pains are gone, its incredible. I havent slept this good in I cant remember how long, though im still groggy upon wakening. Im not at 100% by any means, but I would have paid with anything I had to feel that good before discovering this.

I cant wear any of my old work clothes. I now HATE rainy weather with a passion. I can tell down to the second when mold spores off, its the craziest, crappiest thing. Its actually happened like that a couple times now. Im much more sensitive to the stuff now, but I feel so much better when its not present, fairly quickly even. Part of that is awareness and better avoidance as well as detoxing im sure. I now understand my good and bad periods & good and bad days with crystal clarity.

Im moving out of my house. I looked for more mold and definitely found it. After years of being in residential & commercial construction, remodeling, and remediation, I can tell you its everywhere, the black dirt looking stuff. Im putting everything in storage, and trying to work out the details in blowing out of town and going camping out west somewhere with all new stuff for a while.

People NEED to pay attention to this. I was a typical hard case pwc for almost a decade.

THANK YOU again Erik and Lisa. You have saved my life.
 

Martial

Senior Member
Messages
1,409
Location
Ventura, CA
After using csm and minding my exposure, I must definitely say that I am a total moldie. With new clothes on a bright sunny day outside after a shower my head is relatively clear, emotionally better, neuropathy gone, pem much better, oi ENTIRELY gone, gut problems and food sensitivities much better, pains are gone, its incredible. I havent slept this good in I cant remember how long, though im still groggy upon wakening. Im not at 100% by any means, but I would have paid with anything I had to feel that good before discovering this.

I cant wear any of my old work clothes. I now HATE rainy weather with a passion. I can tell down to the second when mold spores off, its the craziest, crappiest thing. Its actually happened like that a couple times now. Im much more sensitive to the stuff now, but I feel so much better when its not present, fairly quickly even. Part of that is awareness and better avoidance as well as detoxing im sure. I now understand my good and bad periods & good and bad days with crystal clarity.

Im moving out of my house. I looked for more mold and definitely found it. After years of being in residential & commercial construction, remodeling, and remediation, I can tell you its everywhere, the black dirt looking stuff. Im putting everything in storage, and trying to work out the details in blowing out of town and going camping out west somewhere with all new stuff for a while.

People NEED to pay attention to this. I was a typical hard case pwc for almost a decade.

THANK YOU again Erik and Lisa. You have saved my life.

I would address any methylation issues that may have triggered this for you as well.. This way mold won't be an issue as much but stacho black mold still will be, with a CIRS protocol you will clear that out and if you address methylation issues then other forms of mold should not be as much of an issue!

Glad to hear you are doing so much better! That is really exciting, congrats! :D
 
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I am going to go as far as I can with mold & detox, then killing nasty bugs before I jump back on my methylation protocol in order to keep sens's & reactions to a minimum. If I were treating people myself, I would probably adopt that as a basic protocol for that reason.

Thanks!