Has anyone else had a C4a level this high?

Discussion in 'Fibromyalgia Main Forum' started by QuantumKitten, Oct 9, 2008.

  1. QuantumKitten

    QuantumKitten New Member

    I just got back some lab test results, but haven't yet met with my doctor to discuss them. I'm a little bit freaked out by the results of the C4a/C3a tests, so I figured I'd post here, where many of you seem knowledgeable about these things. I'm fairly new to the realm of neurotoxins/Dr. Shoemaker's theories, but have suffered with severe chronic fatigue and myriad other symptoms for 10 years, and have recently come to suspect mold exposure as the primary cause.

    The C4a Level/C3a Complement Protein tests were processed at National Jewish Hospital via LabCorp. My C3a level was right in the middle of the normal range at 428 (reference interval 0 - 940), but my C4a was a whopping 64740 (reference interval 0 - 2830). Eek. Has anyone else here tested this high? From what I've read online, elevated C4a and normal C3a would seem to indicate mold exposure. I'm guessing I've been tested for lupus in the past (so many tests, don't remember for certain), and I know my Lyme tests came back negative, although I did test positive for Bartonella.

    So, can anyone reassure me that I'm not the only one to have a C4a level this elevated? Is there anything other than mold or lupus that could be indicated by these results? I don't have Dr. Shoemaker's book yet, and had never even heard of C4a/C3a until I got my lab results today, so I know virtually nothing about the subject at this point.

    I also have the results of my HLA DRB, DQB Typing lab tests, if they would shed any further light on things. I have no idea how to interpret them, but I gather that Dr. Shoemaker's book is required. Finally, I'll just mention that I've done 5 VCS tests so far, the results of which were: negative, positive, positive, negative, negative.

    Thanks in advance for any feedback you can offer.
  2. richvank

    richvank New Member

    Hi, QuantumKitten.

    Yes, that's a very high C4a number. The highest I'd seen before yours was in the 20,000 range. I don't have a good grasp on what these high numbers mean yet. As you may know, C4a is a fragment of C4, which is one of the molecules in the complement cascade. The complement cascade is a set of molecules in the blood that are part of the innate immune system. When this system becomes activated by a foreign substance, such as from a pathogen, the C4b fragment binds to the foreign substance, while the C4a fragment acts as a low-activity mediator of inflammation. If C4a remains elevated, it means that the complement system is remaining activated, and that means that the body is trying to fight something, but perhaps not very successfully. Dr. Shoemaker has correlated elevated C4a with acute Lyme disease, and I think that Dr. Ray (Raphael) Stricker has associated elevated C4a with long-term Lyme disease.

    Here is the abstract of a paper by Dr. Shoemaker:

    Int Arch Allergy Immunol. 2008;146(3):255-61. Epub 2008 Feb 13.

    Complement split products C3a and C4a are early markers of acute lyme disease in tick bite patients in the United States.

    Shoemaker RC, Giclas PC, Crowder C, House D, Glovsky MM.
    Center for Research on Biotoxin Associated Illnesses, Pocomoke, Md., USA.

    BACKGROUND: Current laboratory markers do not readily detect acute Lyme disease. We assessed the utility of complement and its split products as markers of Lyme disease in patients shortly after a tick bite. METHODS: Thirty-one consecutive acute Lyme disease patients, 14 with and 17 without erythema migrans (EM) skin rash, seen by a physician within 96 h of a tick bite were matched with 24 consecutive tick bite patients without Lyme disease symptoms and 46 healthy control subjects. Complement and split products measured included factor B, Bb, C4, C3c, C3a(des Arg), C4a(des Arg), C1q- and C3d-containing immune complexes, and C2. RESULTS: C2, C4, C3 and factor B levels were within normal ranges in all groups. C3a and C4a levels were significantly higher in acute Lyme disease patients than in tick bite and healthy control groups (both p < 0.001). All acute Lyme disease patients, regardless of EM, had elevated levels of C3a or C4a. Few tick bite controls had elevated levels of C3a (2/20) or C4a (5/24) and only 1 of the healthy control subjects had elevated C3a (0/46) or C4a (1/32). CONCLUSIONS: These findings suggest that C3a and C4a may be useful markers of Lyme disease in patients seen shortly after tick bite, even in those without EM. (c) 2008 S. Karger AG, Basel

    PMID: 18270493 [PubMed - indexed for MEDLINE]

    With regard to your HLA test results, if you will post them, I will try to translate them into Dr. Shoemaker's nomenclature.

  3. QuantumKitten

    QuantumKitten New Member

    Rich, thank you so much for your very informative reply. I've seen multiple mentions online of Dr. Shoemaker believing that elevated C4a and C3a is indicative of Lyme, but that elevated C4a and normal C3a is more likely to be indicative of mold or lupus. However, I have yet to see a paper published by him to that effect. I have no reason to suspect Lyme at this point, as I've had no known exposure and have tested negative for it. I do, however, have reason to suspect mold exposure/sick building syndrome, as the onset of my illness happened very shortly after I moved into my current home.

    My HLA test results can be viewed here (I scanned and uploaded the lab report):


    For some reason, a number of the tests only have a dash in the result column. I don't know whether this means that those tests weren't ordered/run, or something else. Any info you could give me on the results that I do have would be greatly appreciated. Thanks again.
    [This Message was Edited on 10/10/2008]
  4. redhummingbird

    redhummingbird New Member


    Actually Rich is correct in that a high C4a level is correlated with lyme. It's interesting that you tested positive for Bartonella as that is a coinfection of lyme

    My doctor ordered the C4a test to try and get more clues as to how much lyme was an issue for me.

    Rich knows his stuff when talking about this.

    Did you also get your MSH, MMP 9 tested?

    I'm really glad to hear you are looking into the mold issue. All this stuff is so interrelated.
  5. QuantumKitten

    QuantumKitten New Member

    I don't think that my doctor ordered MSH and MMP 9 tests, as there are no results for those in my latest lab reports. I'll ask him about those when I see him next.

    It is possible for Bartonella to exist independent of a Lyme infection, is it not? I simultaneously tested positive for Bartonella (and then positive again after a course of treatment with antibiotics to get rid of it), and negative for Lyme. I've also never had any exposure to ticks, to my knowledge; I'm not exactly nature girl. Should I still be concerned about the possibility of Lyme? Are false negative Lyme test results common?

    The mold issue is scary. I own my home (a condo), and have been advised by a lawyer *not* to test for mold here, because should the tests be positive, I would have to disclose that info if/when I were to sell (and obviously I would have to sell and move if I knew for sure that my home had a mold problem). Of course, I also wouldn't want to subject an unknowing buyer to the same potential problems, although I suspect that I'm just highly susceptible, as nobody else in my building is sick. There's no visible mold or perceptible moldy odor here. I only suspect my building becase of my illness coinciding with me moving here, and because I know there have been multiple instances of leakage/water damage in the building during heavy rains. It's a real catch 22, as I love my place and would hate to move if my home weren't the issue. As a test, I went and stayed elsewhere for about 2 1/2 months last year, to see whether removing myself from this environment would make a difference to how I was feeling. It didn't. I don't know what to think at this point, or what to do.[This Message was Edited on 10/12/2008]
  6. acer2000

    acer2000 New Member

    If you are mold succeptible genetically, you may not feel any different after you leave the moldy place. IIRC Shoemakers book says these people need to take questran to get the mold toxin out.

    I'd be skeptical that you could have bartonella and not have lyme. They seem to occur together. Yes, testing for Lyme is very prone to errors. What antibiotic did you take for the Bartonella that didn't seem to work? And what lab did your lyme testing and was it just an ELISA test, or did they do a Western Blot test also?[This Message was Edited on 10/10/2008]
  7. QuantumKitten

    QuantumKitten New Member

    The whole time I was away from my place, and for several months beforehand, I was following the Cholestyramine (plus chlorella) detox protocol. Five and a half months of doing that religiously, and no change in my health. I still take the chlorella and am now also taking Colestipol (which is like Cholestyramine in pill form).

    I don't have my Lyme lab results handy, and I don't remember for sure what type of testing was done, but I think they did a Western Blot. I also don't remember off the top of my head which antibiotic we used to try to treat the Bartonella. I gave my only home copy of my past medical records to a new doctor I saw, so I can't look it up right now. I'll find out next time I visit the doctor.
  8. Forebearance

    Forebearance Member

    Hi QuantumKitten!

    My C3a was 196. The reference range was 0-205.

    My C4a was 5532. The reference range was 0-2830.

    Yikes, your C4a is really high! And I thought mine was really high. You must feel terrible.

    I have mold poisoning but I don't think I have Lyme, for what it's worth.

    Decoding my HLA-DR genetic test helped diagnose me, because it showed I had a mold-susceptible genotype. I didn't have a Lyme-susceptible genotype. So my case is clear-cut.

    I definitely recommend Dr. Shoemaker's books, because they help you understand what all these tests mean.

    By the way, I never felt better when I left my home, either. I now think it was because I had all my clothes and possessions with me. When I finally decided to start over fresh, I felt a difference.

    I wonder what it could mean that the cholestyramine hasn't done anything for you. It certainly sounds like you have given it a good try. I wish your doctor could do a consult with Dr. Shoemaker, since he's really good at diagnosing people.

    Best wishes to you,
    [This Message was Edited on 10/11/2008]
  9. richvank

    richvank New Member

    Hi, Quantum.

    I'm not able to access the website to see your data. Any chance you would be willing to paste it into a post here?

    Oh, also, I now see that Dr. Shoemaker has associated elevated C4a with mold illness, also, as you pointed out.

    [This Message was Edited on 10/12/2008]
  10. QuantumKitten

    QuantumKitten New Member


    Thank you for sharing your experience. Yes, I feel pretty terrible. I'm so sorry to hear that you had to deal with the mold issue, but it's heartening to know that you managed to achieve some improvement. How extreme did you need to be in getting rid of belongings? I dread the possibility of having to do that. I have a lot of furniture pieces and articles of clothing that would not be replaceable (yeah, I know, it's just stuff).

    I believe that my doctor knows Dr. Shoemaker, so maybe he will be able to get his input on my case at some point.


    I'm sorry you couldn't view my scan. I'll try to reproduce the results just as they appear on the lab report:

    DRB1: 0402
    DRB1: 0701
    HLA DQ: 02MS
    HLA DQ: 03AFB
    DRB3: -
    DRB3: -
    DRB4: 01ZDV
    DRB4: -
    DRB5: -
    DRB5: -

    Thanks again for anything you might be able to tell me.[This Message was Edited on 10/12/2008]
  11. richvank

    richvank New Member

    Hi, Quantum.

    O.K., here's what I think your HLA types are, in Dr. Shoemaker's nomenclature:

    4-3-53 and 7-2-53.

    He classifies the first one as "multisusceptible" and the second one as "mold" in Appendix 5 of his book Mold Warriors.

    I would say that these results are compatible, together with your elevated C4a and your two (out of five) positive VCS tests, with the hypothesis that you have mold illness. Sorry about that. Fortunately there are things that can be done, but removing oneself from a mold-infested environment can be a major undertaking, as you've already discussed, and as some people on this board can attest from personal experience. The other aspect is clearing the mold toxin out of the body, which Dr. Shoemaker has pioneered with cholestyramine, and which you have already tried. Beyond these actions, I suspect that some people may need to deal with a partial methylation cycle block, which the simplified treatment approach I have described is designed to do (discussed in my post to this board on July 18, 2007).

    One more thing: Do you have a cat? Bartonella is very commonly transmitted by cats ("Cat-scratch disease").

    [This Message was Edited on 10/12/2008]
  12. Forebearance

    Forebearance Member

    Oh, QK, I'm so sorry to hear that you have the multi-susceptible and mold-susceptible genetic combo.

    It must be rare among the general population to have that combo, but it's shockingly common here among us people with CFS on ProHealth. Gosh. I know of at least two other people who just found out recently they have the same combo.

    One was redhummingbird and one was rrrr. Also, I believe Erikmoldwarrior has that combo. But his posts are no longer on this board.

    Well, I had heard Erikmoldwarrior and Slayadragon talk about how they did mold avoidance. They both said they had to get away from every single possession that had been in their mold-infested homes. And I heard other people chiming in and saying that even a hairbrush bothered them, etc.

    I happen to be extremely attached to my possessions! I have some heirloom furniture and really nice clothes and lots of sentimental stuff. I wasn't about to get rid of anything that was important to me. So I put it all in storage.

    And then I did start over with absolutely nothing. It has been very bizarre but also kind of freeing to have nothing. Although I did keep my credit cards and my cell phone. (I keep my cell phone in a plastic bag and I rarely use it.)

    I happened to have an old computer and an old car, so I got new ones. I could justify it because I needed new ones anyway. It was a pretty drastic life change. But I really wanted to get well. So I decided to go for it. I'm probably still not adjusted to the major change yet.

    Now I'm looking for a place to live that is relatively mold-free. Luckily I was only renting an apartment before, so I didn't have to worry about selling a contaminated house. That would be tough.

    So anyway, I have been taking three of Rich's simplified methylation protocol supplements for 18 months now. I really like them. I take small amounts so they feel supportive rather than challenging. They help keep me regular when I take all the stuff to detox mold poisons, like csm, which can really clog a person's digestive system up.

    As far as I know, Slayadragon and I are the only two people who are doing both mold avoidance and methylation supps at the same time. We both feel Rich's supps have been really helpful.

    I still don't know how having a partial methylation block and having mold-susceptible genotypes fit together. Maybe the same people who have one thing are likely to have the other.

    [This Message was Edited on 10/13/2008]
  13. QuantumKitten

    QuantumKitten New Member

    You guys are so awesome for taking the time to answer all of my questions and then some. On the one hand, it's very comforting that others have traveled this road before me and know so much about it, but on the other hand, I almost wish that I were alone in all of this. I hate the idea of anyone else having to go through what I've been through... or worse. Honestly, if any of you feels half as lousy as I do, it's extra-kind of you to make the effort to respond in such detail.

    Having said that, I do have another question: Could you elaborate a little bit on "multisusceptible" and what that encompasses?

    Oh, and Forebearance, I can't imagine having to do what you've done (although it sounds as though I may need to start). You have to be a strong person to take such extreme measures, to let go of everything that's familiar and dear to you, even when the potential payoff is worth the sacrifice. You and the others who have managed to start over from scratch have my utmost respect. I hope that I can live up to your example, should it prove necessary.

    Rich: I've never owned a cat, nor have I ever been scratched or bitten by one, to the best of my recollection. I have no idea how the Bartonella was contracted.
    [This Message was Edited on 10/13/2008]
  14. richvank

    richvank New Member

    Hi, Quantum.

    The 4-3-53 HLA genotype is one of those that Dr. Shoemaker classifies as "multisusceptible." People who have one of these genotypes are susceptible to a variety of biotoxin illnesses, including mold illness and Lyme disease. Sorry about this, but he has called these the "dreaded" genotypes. He finds one or two of these genotypes in people who have CFS that does not reverse, even after he has cleared out the biotoxins using cholestyramine. These are his "tough" cases. It sounds as though this corresponds with your experience.

    As I mentioned earlier, I suspect that these multisusceptible people may have to clear a partial block in their methylation cycle as part of their treatment. This is an idea we have yet to test in an organized way. The methylation cycle block treatment was adopted from autism research and was applied on a theoretical biochemical basis to "pure" CFS. The "simplified treatment approach" for doing this has been in use for only a year and eight months, starting with deliarose on this board. We are just now considering trying to find out in a more structured way if it can help people with mold illness or Lyme disease. My hypothesis is that Lyme disease can lead into CFS in people with certain genetic predispositions, and perhaps that is true of mold illness as well. There are a few people on this board who have been combining treatment for Lyme disease or mold illness with treatment to lift the methylation cycyle block, and there have been some initial reports suggesting that this has been helpful. This approach is new and is still at the "cutting edge" of the research, so I can't give you quantitative data about it, but I'm hopeful.

    [This Message was Edited on 10/13/2008]
  15. Forebearance

    Forebearance Member

    According to "Mold Warriors", the multisusceptible genotype means that your body is unable to get rid of several different biotoxins by itself. Dr. Shoemaker lists mold toxins, Lyme toxins, Pfiesteria, Ciguaterra, some kinds of blue-green algae, and brown recluse spider bites as examples.

    The tricky thing about this genotype is that it doesn't point directly at one particular kind of biotoxin. So then you have to figure out which biotoxin or biotoxins are making you sick.

    Lisa P (Slayadragon) thinks that many people have both Lyme and mold toxins as a root cause of their CFS. So just finding out that one is bugging you may not be the whole answer.

    Dr. Shoemaker was pretty pessimistic about the multisusceptible genotype when he wrote Mold Warriors. He hadn't been able to fully cure his patients who had that genotype. But after he wrote the book he found out that Erikmoldwarrior HAS the dreaded genotype. And Erik manages to be 100% well by following strict mold avoidance.

    And Slayadragon says she is 100% well if she follows Erik's procedures exactly. She went and visited Erik and learned all the stuff that he does. She's even writing a manual on how to do it. (Because not everybody can go and visit Erik for a week!)

    So there is hope. And new things are developed and discovered all the time. Dr. Shoemaker wrote he thinks that if MSH supplementation were made legal, many of his tough cases would be helped.

    In my case, I was really motivated to try this drastic strategy for getting well because I had been sick for 18 years and I felt like my life was passing me by. My life was comfortable and safe and going nowhere! lol

    So I think it's something that no one can tell you you HAVE to do. I think it's up to you and your best judgment as to whether you want to try something so drastic as starting over from scratch and possibly getting totally well.

    There is a down side to it. Once you get totally away from toxic mold, then if you are around toxic mold again, it makes you really sick. Unbearably so. So it puts limits on going in certain places. I just found out my favorite restaurant in my home town has a serious toxic mold problem. So I can't go there any more. Stuff like that.

    [This Message was Edited on 10/14/2008]
  16. redhummingbird

    redhummingbird New Member

    I have the same genotypes as you do. It might be worth getting the MMP9 and MSH test done also.

    I wanted to underscore something forebearance said: having this genotype doesn't mean you can't get better.

    I've been sick a little over a year now. I started seeing a doctor who specializes in this stuff in May so I'm only 5 months into treatment.

    My doctor says Shoemaker is wrong that people with this genotype don't get better.

  17. QuantumKitten

    QuantumKitten New Member

    Thanks for the optimistic words. They're definitely welcome right now. Redhummingbird, you're fortunate to have found a good doctor relatively quickly. It took me over 8 years to find one who had the vaguest clue about my illness.

    Is there really no form of effective mold remediation that can be done for one's belongings? It seems as though there should be a way to make these things safe. If they can salvage entire buildings that have toxic mold inside the walls and the ducts, then I should be able to keep my red suede Marc Jacobs shoes, right? Or at least my CD collection?

    Oh, and as to the antibiotic that was used (unsuccessfully) to treat my Bartonella, I seem to recall that it was Levaquin.
  18. Forebearance

    Forebearance Member

    Hi QK!

    Well, this is a very new area right now. There aren't a lot of definitive answers. All we have is the experiences of other people.

    So for example, Erikmoldwarrior wrote that his hard-surfaced possessions denatured after they had been sitting in a storage unit for five years. So for example, things made out of plastic. But he said a book of his is still poisonous after 20 years have passed. So he feels that things made of porous materials like cloth and paper will hold on to the poison for a long time.

    Another person (I think on Dr. Klein's website, stachy5u) wrote that putting things through the dishwasher denatured the posions on them. So some people tried it and put their CDs through the dishwasher and it worked. I tried it with my dishes and glass items, and it didn't work for me. It probably depends on the type of mold it was and on the particular person.

    My stuff still burned my skin when I touched it, even after it came out of the dishwasher. And these were the dishes I was eating off of a couple weeks earlier! It was so bizarre. But after I got away from mold toxins I became really reactive to them.

    Lisa P. reported that she was able to clean her car keys and jewelry in an ultrasonic cleaner. I'd like to try that for small items, and I'd like to get a big ultrasonic cleaner and try putting my good clothes in it. I bet it would work. The principle is that temperatures above 500 degrees F can denature mold toxins, and ultrasonic cleaners make microscopic bubbles that are that hot. But the item itself doesn't get hot. The water stays cool because it is all happening on such a microscopic level.

    My problem is that the big ultrasonic cleaner I want costs $4000. Geez! That's a lot of money. I haven't even tried a small one yet, because I'm waiting until I find a new home and settle down again.

    Mold toxins attach to surfaces with a bond that is really hard to break. It's all a bunch of physics and is over my head. I think what we really need is a physicist to help us figure out how to break those bonds. Erik says that the military is working on the problem, because some countries are developing biological weapons made out of mold toxins. And they need to find a way to get weaponized mycotoxins off of their equipment. So I hope they invent some way to get them off.

    If you want to discuss all the nitty-gritty details of how the heck you avoid mold toxins and live the mold-avoidance lifestyle, there is a bunch of discussion of it on cfsunited. It's really just a bunch of people comparing notes. I wish there were better answers for these questions. For now all we have is one another.

    People seem to handle this challenge in different ways. I know Slaya decided to get rid of her good clothes and most of her books. I held onto most of my books and clothes and put them in storage. I decided to copy all my music CDs onto my computer, and I scanned all my favorite photos into my computer. Then I put them onto a portable hard drive and transferred them to my new computer. I still have the originals in storage, but this way I can enjoy them in the meantime.

    I know it's really daunting.

    Nobody even knows if mold avoidance is the best answer. It's the only answer we have so far, though.

  19. acer2000

    acer2000 New Member

    Well, FWIW my C3a is 183 and my C4a is 3442. The max range on C3a from labcorp is 940 and the max range for C4a is 2830.
  20. Forebearance

    Forebearance Member

    P.S. I forgot to say that for people with my genotypes and your genotypes, remediated buildings aren't safe to live in. They're fine for most people, but not us. Sigh.

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