1. GBHope

    GBHope New Member

    How many of you have had high C4a levels? It is supposed to be 2830 and mine is 7436 I think or there about. Alternative med doctor said that could be lyme or mold, but have also read that those of us with CFS can have high levels. My lyme test is completely negative. My sed rate is normal and so is my CRP; although, they have been elevated at times. I have had so many tests go positive and negative, I'm totally overwhelmed. Freaking out because I got even more sick after vaccines the end of November and afraid that there is a bad mold problem in here because of off and on nasal stuffiness in sinuses and ears, etc. I'm quite the worrywort, but this is scary. I'm so sick of all this because there have been so many things that come up with folks that have been said that are making them sick. This is awful and depressing. The last ID doc said that they can't figure out what is making people sick with this and that we should be careful whenever people say they have a cure. This alternative doc wants to give me cholestyramine (Questran), which I probably would not tolerate. I'm so depressed I could just scream.
  2. Forebearance

    Forebearance Member

    Hi GBHope,

    I'm so sorry to hear about your tough situation right now. Anyone would be depressed facing all this illness and uncertainty.

    All I know is that high C4a means you have a lot of a certain type of inflammation. I think inflammation causes a lot of our symptoms. At least for me it does.

    I did have a high C4a also when I had it tested. I did it along with several other blood tests and together they painted a picture of mold poisoning. Dr. Shoemaker has a panel of tests he uses to diagnose people, and you have to have a certain number of tests come back abnormal to be diagnosed with either Lyme or mold poisoning or poisoning by some other biological neurotoxin.

    Here is a webpage with a list of the tests he does:
    http://www.survivingmold.com/diagnosis/lab-tests

    Dr. Shoemaker does claim to be able to cure people from mold illness, but people with CFS are a special case, I think. His treatment approach has helped people with CFS that I have talked to, but I don't know of anyone with CFS who has been totally cured by his treatment plan. So take it with a grain of salt.

    I couldn't tolerate cholestyramine, either. I take soluble fiber instead. It is super gentle, and of course it works a lot more slowly. Some people take Welchol if they can't tolerate cholestyramine. I think phytosterols would work, too. They were a hair too strong for me.

    The good thing is those toxin-absorbing things would work for Lyme or mold toxins, or whatever might be poisoning you, if being poisoned by something is your issue. So you could try them before doing all the tests.

    I did try some phytosterols when I lived in my moldy apartment, before I got diagnosed with mold poisoning, and I noticed they made me feel a lot better. That encouraged me to spend the money on the tests.

    I wish you all the best on getting a handle on things.
    Forebearance
  3. GBHope

    GBHope New Member

    I am taking lots of probiotics. I have heard that that can help restablish and push out the toxins. I am also taking Livaplex by Standard Process. I just don't think that I would tolerate that cholestyramine. I have a very touchy gut. I went online even before I saw your E-mail to register for the VCS testing thingy with Shoemaker, but like you said, folks with CFS are a unique case and you have to take a lot of this with a grain of salt. There is always someone out there with a supposed cure. I'm assuming you eventually moved out of your moldy apartment? Could you actually smell the moldiness? I would love to move out of here because we have a moldy smelling crawl even though it is dry because of course it is under your house so it's not gonna smell great and I know when our air conditioner ran last year it bothered me. Our ducts are in the crawl too. I have had some improvement, but not completely. I get dizzy and off-balance a lot with this lovely disease and lots of sinus and ear issues. Sometimes I feel almost normal. I hate this disease. Yes, I agree there must be a lot of inflammation somewhere, but recently on testing from Cleveland Clinic I had a normal sed rate and CRP. Very weird. They also could not do skin testing on me after being off my Allegra for 72 hours. I was itching and welting all over and when they did the scratch test, I got bumps for everything, but I only itched at the histamine control. They said dermatographic urticaria. So I had RAST tests with me that were only a couple months old and they went off that, but I reacted to nothing, which I know is not true because I'm sensitive to many, many things. Did you C4a ever come down or did they retest? I wish I knew if I had mold in here that I was sensitive too. The bad thing is our whole neighborhood is moldy and you can smell it in the summer. Wish I'd never moved here. I need to get out of here. After all, Toledo is known as the Black Swamp.
  4. Forebearance

    Forebearance Member

    Hi again GBHope,

    Oh, I haven't heard that about probiotics. Interesting. I like the Standard Process products a lot.

    Oh yeah, I did the VCS test online, too. That was one of the first things I did because it was cheap. Mine came back positive for neurotoxin poisoning. It was another clue.

    Yes, I did move out of my apartment. It was a half basement and had flooded three times while I lived there. I had some spots on the carpet tested and it turned out there were several kinds of toxin-producing molds and bacteria in it.

    It took me two months to pack and sort and get rid of about half my stuff. I had to hire help because I was so sick. By the end of the two months, it was getting warmer and was starting to smell like mold in there.

    Yes, I know someone who got vertigo from exposure to mold toxins. She has some permanent damage to her inner ear, I think. It's a scary thing. She had cleaned up some mold herself right before it happened. So I didn't try to do any cleaning of the mold in my place.

    Dr. Shoemaker is brilliant at diagnosing these kinds of things, and he says that normal blood tests don't show the markers for biological neurotoxin poisoning. Also, keep in mind that allergies are a separate issue. A person could theoretically have both allergies and poisoning. Or one or the other.

    I should get my C4a retested. It was around where yours is when I lived in the bad place. Now I've been living in better places for a few years.

    I understand what you mean about wanting to get out of your neighborhood! I grew up in southeastern Michigan and even visiting there is an ordeal now. There are so many toxins in the air.

    Wow, Toledo is known as the Black Swamp! That sounds ominous. I definitely am not going to go there any time soon, I guess.

    Best wishes,
    Forebearance
  5. GBHope

    GBHope New Member

    I'm glad you were able to get out of that apartment. Do you feel like you had permanent damage from that? My husband won't listen to me about the mold. That's terrible about what you said the gal had permanent inner ear damage from the mold. I feel like that has happened to me to some extent. Did it ever get any better for her? I hope so. I do not want to have to live my life like this. I'm scared that whatever this is it will kill me; although, until this last couple of days I have had some improvement over the last couple months. Maybe because we have less mold in the air because of frosts. I want to have someone come in and do a really thorough inspection because if there is mold in here that is making me sick, I'm going to have to leave at some point. It just scares me half to death that I could be permanently damaged from mold if it was mold. Like I may have said, my lyme test was negative at this point, twice in the last 2 or 3 months, locally and at Cleveland Clinic. I've got to find a way to find out if there is mold in the walls or down in the crawl. My house doesn't smell like mold when you walk in it, but I really smell a musty smell in the summer, but I don't actually smell mold per se. You smell the mold outside too. It's awful in this neighborhood. How did you pack things up w/o bringing the mold with you? Scary, scary stuff. Did you feel you improved when you got out of there?[This Message was Edited on 12/12/2012]
  6. I am SO sorry to hear what you are going through and have been dealing with... I know it can be overwhelming when there are so many possibilities of variables that are impacting our condition and this DD!

    I, too, have wondered if mold or the fact that we live just 5 miles from a landfill could be adding to my health problems.
    I know we have a spot in our main bathroom that has mildew... I try to have someone spray tilex on it every other week... I can't be near the fumes of bleach since I am so sensitive to all chemicals. Also, we have a wall ac/heater unit in one of our rooms that always smells like mildew now... it is almost impossible to clean because of how it was designed. We just haven't had the money to replace any of those things. The bathroom wall will be a big and costly job...
    ... and even though I rarely use that bathroom, it is near the air intake vent for our central air and heat in the house... So like you, gb, I have been concerned about this situation as well. There's just so many factors that can be contributing to or causing our health issues that it can be maddening, if we let it overwhelm us. So I always turn it over to the Lord and pray about it and ask Him to reveal to me what I need to do next to help myself (I also pray for healing)... there's just so much that we can do or handle... and it seems so impossible, that only God can help us... so I continually turn to Him for help and guidance... That is the only way I've been able to have peace in the midst of such overwhelming odds...

    I'm not familiar with any of the tests you mentioned: C4a, VCS, nor RAST.... Can you explain what these test for? I saw you mentioned (or forebearance did... can't remember) neurotoxins. So are any of those tests similar to a Provocation test? I had one of those (thinking I could start chelation by I.V.) and I tested positive for MANY neurotoxins... esp mercury (off the charts), lead, cadmium and uranium (to name a few). Those were the highest levels, I think. But sadly, I'm not a candidate for chelation... they tried one session with only a HALF dose of the chelating agents and I was so sick the next day I couldn't move or speak! I felt paralyzed and too weak to even whisper. So I took that off my list of possible help for my condition.

    But let me know what those tests are and what they're abbreviations are for. And please know that I empathize and will be praying for you! Hang in there, GBHope! Praying you will discover a solution to your mold problem... or will be able to get out of there... God bless you!

    Blessings and Gentle Hugs,
    Shel






    [This Message was Edited on 12/13/2012]
  7. GBHope

    GBHope New Member

    Hi Godismystrength. I really enjoyed your note and it is so true that we have to put things in God's hands. It has been a nightmare lately. Like yourself, I'm supersensitive to everything. I have so many doctors involved in my care that I can't keep track of everything. I know I'm tired of having these horrible sinuses and ears that get plugged sometimes, being off balance and dizzy. I'm so sorry you have those smelly areas in your home and I know how you feel that money is a big problem. I got very sick over the summer and our crawl space smells lovely, even with a functioning sump pump, but it has been so dry that it not even coming on. I pray that we both will find some relief. Some days aren't so bad. Today was rough, as I seem to have some neurologic issues along with this where I get shaking and my legs don't want to work properly. The C4a is supposed to indicate inflammation and is commonly seen with lyme or mold illness and other illnesses. I have been sick since 1995, but didn't get this bad until last fall and then this spring. I am very allergic to everything now and although I have had some improvement over the past 2-3 months, I still revert back to the bad spells, but never completely get my balance back. I did have positive inner ear test on the right this summer when I had a bad sinus/ear infection. I can't keep my sinuses clear anymore. I live on sinus medicine. I just want some relief. I had hoped when I went to Cleveland Clinic that I would improve. Unfortunately I did not completely improve. I still continued with weakness, some dizziness, sinus symptoms (mostly at the hotel because of air freshener or something), palpitations, etc. I did a little better when I came back for a day or 2, but not completely. The only thing I have found so far from that 4-day visit was high B6 (supposed to be done fasting and done nonfasting), hair low potassium at 3.3, supposed to be 3.5, and high ALT at 48, supposed to be 45. Supposed to have autonomic testing done, but so far everything is negative. There is one test they are waiting for that could indicate some type of hidden cancer we are still waiting on, but they ordered all kinds of different tests. Also kind of low-level vitamin D. Of course, they confirmed the fibromyalgia, chronic fatigue syndrome diagnosis. I could get out of this house if we proceeded with our probable bankruptcy and I would love if nothing else to get someone in here to do a more thorough exam. I'm just a nervous wreck. We came back from our trip and our house smelled like wood from being closed up. Hopefully that was not mold, but I don't smell mold when I come in here. My daughter is allergic to mold and she recently went into a building for the presidential voting and the building smelled moldly and musty and she said it screwed up her nose and made her throat choky. She does not experience that at my house, but I still think there may be a problem here. I think some of it is coming from the duct work itself because in my room and the room next to it, there is a horrible smell that comes out of the duct, which is why I have it closed. I don't know if it is pulling up the crawl smell or something is dead in there, LOL. I have no energy and feel like I have to push myself to do stuff and most of the time I get sinus issues and feel off-balance. I'm sick of it. I know at the hospital my nose was better with all their clean air, but I have had sinus issues for years. I personally think that some of my problem is the high EBV and the vaccines. That's when my sinuses got really bad and when I had to turn on the furnace for fall 2011, but the air conditioner had been running before that and no problems. I just don't know what to do anymore. My symptoms come and go so much and now I'm freaking out because of the vitamin levels. I'm a nervous wreck to say the least. Are you guys able to do anything about the possible mold at your home? I hope so. Look forward to talking with you some more.
  8. Forebearance

    Forebearance Member

    Hi GBHope,

    I don't feel like I had permanent damage from my moldy apartment. But then I didn't seem to have stachy in there. The person who got the vertigo was cleaning up some stachybotrys mold in her bathroom. I think different toxins cause different symptoms.

    I don't know if she ever got any better.

    My home didn't smell like mold, either. Many kinds of toxin-producing molds don't have a noticeable smell. But there were also bacteria in my carpet that did start to smell.

    Well, I chose to put my possessions into storage. The only things I took with me were my credit card and driver's license. And I put them in plastic bags!

    That had the result of making me feel a lot better, but it also made my immune system become very touchy about being exposed to mold toxins in the future. Whenever I am around mold toxins now, my immune system freaks out and I get symptoms of inflammation.

    People I have talked to who have moved with some carefully cleaned items have had a more gradual improvement.

    Forebearance
  9. GBHope

    GBHope New Member

    Hi Forebearance,

    I don't have anyone to clean all my stuff. I'm sure I probably wouldn't take much either. Your clothes you can wash. I don't know how I'm supposed to get away from the mold if there is mold because my husband won't believe that could be a possibility. Now on top of everything else I found out I have high levels of B6. My neurologist wants me to stop my Standard Process vitamins that have B6 in them, which I would rather not do. I just feel so overwhelmed by everything and don't understand why I started to improve, but now I'm getting a little bit worse. I feel like there is so much going on I will never feel better. I probably have had some constant mold exposure for quite some time. In our old house that we sold in 1998, you actually could smell the mold in the basement if you went down there and it is the same in my crawl space. Both places had the duct work in that area. I did get my furnace and duct replaced at the old house, but can't do that here. I need to find out for sure if there is a mold issue because it is the only way to get my husband to believe me. I can't talk to him about any of this. He gets cranky, even though he is suffering with a lot of the same symptoms as me. He does not have the trouble with walking, but he has the constant sinus issues and gets dizzy. He also works in warehouses at work and I know at least one of them he states it smells musty and moldy. I feel like there is no hope for me to get out of this situation and although I improved over a 2 or 3-month period a little, I can't completely get rid of everything. I am sick of being dizzy and stuffy and feeling like crap. If I didn't say it, we have had leaks in several different areas in the home and then there is the musty crawl. OMG I can't take anymore between that issue and the high B6 and the low vitamin D and the high C4a. Did you say you did or did not have sinus issues or ear issues with your mold exposure? This is a bloody nightmare I can't wake up from. It was nice to get away from it in Cleveland, but that didn't fix everything because the room was stinky. My nose is never completely perfect, but sometimes much better. It just depends on what I'm exposed to, the weather, etc. I just want it to end, but I'm afraid if I'm being exposed to something that I will never recover as I have been exposed to it since the first house and then quite possibly this one. You're so lucky you were able to get away from it, but it's unfortunate you are so sensitive now. Why did you say you thought you became more sensitive?
  10. ... just a quick thought: have you tried using a nose bedet (aka netty pot)? I used to have chronic sinus infections for years... and then a few years ago, I learned about the netty pot and I've not had a problem since. I use it evry night to flush out my sinuses as part of my nightly routine and it helps immensely. It has been a Godsend for me... But you have to be sure to use boiled water mixed with filtered water (to achieve a warm, not hot, water temp) ... the water must be as pure as possible and then you add a little salt to it and stir. You cam get the netty pots at the drug store... and packets of premeasured salt that comes with it too, for convenience. The netty pot has instructions telling you how to use it.... just thought I'd mention it... you can do it as often as you need it.... when I start getting a cold or congestion, I use the netty pot up to 3 times a day... and it really helps keep my sinuses clear... I just wanted to mention it in case it could help you... keep us posted...

    Still praying for you...

    Blessings,
    Shel
    [This Message was Edited on 12/13/2012]
  11. Forebearance

    Forebearance Member

    I'm sorry to hear about your husband not understanding.
    I didn't have ear or sinus issues in my moldy home, but I do now in bad places.
    I think I became more sensitive to mold toxins when I got away from them so completely.

    Maybe you guys would enjoy this blog post:
    http://blog.healclick.com/mold-sensitivity-tips/

    Forebearance
    [This Message was Edited on 12/14/2012]
  12. GBHope

    GBHope New Member

    Yes that definitely probably makes things worse having the exposure and then not being around them. I got to a point for a while through the years where I could tolerate things a lot better and now I've become so sensitive again. It's ridiculous. I do have days where it seems not as bad for whatever reason and I wish I knew. Yesterday for instance my brain fog got better and I felt better. I was even able to do some light cleaning in my bathroom and sort through some paperwork. Today is not so great. I wish I could get away from whatever is bothering me, if there is even something that is bothering me. I'm sorry you experience so much trouble when you are exposed now. At least you aren't getting where you live, which probably makes it much easier to to think and function; although, I'm sure you still have lots of symptoms, but I would give anything to not have all the issues I have been having since getting the vaccines. That is when things just got out of control. Like I said, some days are not so bad and some are awful, and like I said I was doing better before the trip. I just hate this.