Richvank taking my posts off the other thread...

Discussion in 'Fibromyalgia Main Forum' started by frango2, Oct 10, 2008.

  1. frango2

    frango2 New Member

    I feel that thread had too many different conversations going...

    Thanks as always for your interest in researching the cause of these poorly understood illnesses.

    It is very frustrating to be dealing with these illnesses when there is so little known about cause, effect and proper treatment.

    I also have high Rnase L and Elastase levels as well as an elevated C4a.

    Any thoughts on how all those play into these illnesses? I see others here with those same issues.

    We had our house tested for mold ( there was non found ).

    Dr. Vrchota suspects chronic Lyme for the C4a elevation, but she said any neurotoxin could cause the high levels.

    I wonder of on-going food sensitivities could be causing this type of inflammation?
  2. richvank

    richvank New Member

    Hi, frango2.

    In my hypothesis, the persistently elevated RNase-L in CFS results from inability of the immune system to mount a normal cell-mediated immune response against viruses, intracellular bacteria and/or fungi. Normally, when there is a viral infection, for example, the immune system responds early on with an elevation of interferon alpha, which stimulates some efforts to slow down the propagation of the viruses. One of these efforts involves elevating RNase-L, which chops up messenger RNA and slows the production of new viruses. This is intended only to be a holding action, while the T cells mobilize a more specific cell-mediated attack on the cells that are infected with the virus, and kill them. However, in CFS this "cavalry" never arrives, because the depletion of glutathione and the partial block in the methylation and folate cycles prevent a normal cell-mediated immune response. So the RNase-L just stays elevated and keeps trying to fight the battle against the viruses alone. Based on this hypothesis, I would say that if RNase-L is staying elevated, it usually means that there is a viral infection and that glutathione depletion and a partial methylation cycle block are preventing an appropriate immune response.

    Elastase is an enzyme that breaks down proteins, and it is produced by certain white blood cells (neutrophils and monocytes) when there is inflammation. In CFS, persistent inflammation is common. I think it results from a combination of the presence of infections that are not knocked out because of the immune dysfunction (again due to glutathione depletion), and because the level of cortisol is too low to control the inflammation in a normal way. I believe the low cortisol problem usually stems from low glutathione in the pituitary, which inhibits the proper production and regulation of ACTH, which is the hormone that controls cortisol secretion by the adrenal glands.

    Persistently elevated C4a is another marker showing that the immune system is not functioning normally. In this case, it shows that the complement system is remaining activated. The complement system is part of the innate immune system. Dr. Shoemaker has found that elevated C4a correlates with Lyme disease and with mold illness. I'm not sure of the precise mechanism, but perhaps the complement system is attempting to deal with the biotoxins produced both in Lyme disease and in mold illness, though in Lyme disease it may be combating the Borrelia bacteria directly. In these cases, according to Dr. Shoemaker, the HLA polymorphisms cause the immune system not to recognize the biotoxins, and thus the T cells are not mobilized to take care of them in the normal way. The complement system may be the "back-up" system in this situation.

    As far as I know, food sensitivities would not be involved with these markers, but they can certainly cause other problems, such as elevated cytokines, which can produce unpleasant symptoms.

    [This Message was Edited on 10/12/2008]
  3. frango2

    frango2 New Member

    I do ( or did, haven't rechecked them ) have re-elevated hhv-6, Parvovirus, CMV, and EBV.

    I have not treated the virus's and have only chosen to treat the Lyme. Since I saw the tick that bit me and have a positive Lyme test I have some degree of confidence that that is what kicked this whole thing off, at least for me. But, I guess we need to keep in mind that these ticks are passing on things that are in the other animals they feed off of which could include other unknown bacteria, viruses and even parasites. Pretty gross to think too much about...:(

    The reason for the question on RNase-L and Elastase is that I know of one person who was able to bring their numbers back to normal by only eating protein and veggies for 6 months. I was wondering if offending food allergies could cause the inflammation in the gut that would trigger a cascade of immune deficiency. If the allergies were bad enough, could it lead to vitamin (particularly B vitamin) deficiency that could help jump start a Methylation defect?

    Here is another question for you? It seems that many folks with this illness have thyroid issues. Do you have any theories on a connection there?

    Thanks for your insight... It is always fascinating.

  4. richvank

    richvank New Member

    Hi, frango2.

    I think it is possible that CFS could start in the gut. As you may know, Dr. Kenny de Meirleir is focusing on this type of hypothesis. Recently, he suggested a way in which this might tie in with the methylation cycle block. It's known that beneficial bacteria in the gut make some of the nutrients that we need in our bodies--sort of a symbiotic relationship. One of them is folate. If we don't have the right set of bugs down there, maybe we can go low in folate, especially if our diet is not too good, so that we are not getting enough folate from our food. Inflammation in the gut might also interfere with folate absorption, and food sensitivities might be a possible cause of that.

    Another possibility that has occurred to me is that if the digestive system is not functioning well, there may be a problem with absorbing vitamin B12 from our food. For example, low stomach acid can make it difficult to separate B12 from protein so that it can be bound by intrinsic factor. Also, in the latter part of the small intestine (the terminal ileum), if there are problems there, the absorption of the B12-intrinsic complex may not go so well. Perhaps inflammation associated with food sensitivities could contribute to a problem like this.

    As you probably know, both folate and B12 are needed to keep the methylation cycle running well. So if either goes low, I think that could trigger a methylation cycle partial block, which could then bring down glutathione and produce CFS.

    With regard to the thyroid, I think (based on the work of Duthoit) that the connection with CFS is that when glutathione goes low in the thyroid, proteins in the thyroid are attacked by hydrogen peroxide, which the thyroid generates as part of the process for making thyroid hormones. The damaged proteins appear foreign to the immune system, and that causes an autoimmune response (Hashimoto's thyroiditis). It's very common in CFS. A few people have found that their thyroid has bounced back when they've started treatment to lift the methylation cycle block and raise glutathione. A couple of people reported that they went into a hyperthyroid condition right away, and had to stop taking their thyroid supplements.

    [This Message was Edited on 10/13/2008]
  5. frango2

    frango2 New Member

    It appears that I am one of those folks that you mention who need a lot of B12. I am on daily injections plus 5 perQue B12 a day. My husband seems to get a big burts of energy from his B12... not so for me.

    But, I continue with Methylation and it seems to be slowly helping.

    Now my 7 year old is exhibiting some of the symptoms that are my worst symptoms. He has dizziness, headaches and has been shown to have poor Thyroid function, which is unusual for children.

    He tests positive for Anaplasmosis (formerly Erlichiosis HGE). My older son and husband test positive for Lyme.

    I am thinking about asking Dr. V about Methylation for my 7 year old.

    I don't know if it is the tick borne illnesses that are kicking all this off for him, or if it is genetic, but I do not want him to go through what I have been through.
  6. deliarose

    deliarose New Member

    So Rich based on what you say here, would R-Nase L be a good proxy marker for viral activity?

    Sounds like it could be a better marker than IGG titers or whatever.

    Ditto, Elastase for inflammation & C4a for lyme, or mold?


  7. redhummingbird

    redhummingbird New Member

    I was going to ask the same question as deliarose.

    I'm also trying to figure something out. I'm hoping you can shed some light on this.

    My MSH is low, MMP9 is high but my C4a levels are normal.

    I just did a little petri dish experiment for mold (my doctor recommended it) and found out mold is most likely a problem where I live but my C4a doesn't reflect that.

    It's very puzzling.

    I'm 10 weeks onto the methylation protocol. How long before seeing results? I'm trying to figure out if I need to add more supplements in or keep increasing the ones I'm on. I've had some improvement but have had a recent backslide.

    My doctor would like me to start valcyte pending the RNase L panel results. I'm very reluctant. My doctor said we could stop the valcyte if I start feeling too poorly. I think he's a very good doctor and trust his judgment but I'm worried about the toxicity factor.

    I'm interested in your opinion (I'm posting everwhere about this and gathering opinions so I can make an informed decision).

    Thanks so much for what you do for us.
  8. richvank

    richvank New Member

    Hi, deliarose.

    Yes, I think so.

    As I understand it, Dr. de Meirleir uses a combination of the RNaseL Protein Assay and the RNaseL Activity Assay to determine both the level of RNaseL and its degree of cleavage to form the unregulated lower molecular weight version of RNase-L. Elevated levels usually mean that there is an ongoing viral infection. However, a few years ago, Vojdani et al. showed that some chemical toxins can also cause elevation of RNase-L.

    It isn't yet clear what cleaves the RNaseL. The literature from RedLabs has attributed it to elastase, but I don't think that's possible inside living cells, because inside the cells, elastase is sequestered within granules and vesicles, and it doesn't have physical access to RNase-L, which is located in the cytosol and the nucleus. I have had some correspondence with Dr. de Meirleir's associate, and he agreed that this is not established. I suspect that calpain is responsible for cleaving RNase-L, and that it is activated because of depletion of glutathione, but this is just a hypothesis at this point. Dr. de Meirleir's group has shown that calpain can cleave RNase-L, and there is literature evidence that low glutathione will allow it to activate.

    The elastase level in the blood is an indicator of inflammation. I don't know how well it correlates with the other indicators of inflammation, C-reactive protein and the erythrocyte sedimentation (Sed) rate.

    Elevated C4a does seem to correlate with both acute (based on Shoemaker's work) and long-term (based on Stricker's work) Lyme disease and with mold illness (based on Shoemaker's work). These are fairly new results, and people are still studying how general they are, and whether other factors can elevate C4a and confuse the diagnostic situation.


  9. frango2

    frango2 New Member

    My sed rate and c-reactive protein levels are both low. Sed rate is actually really low. (2)

    My Elastase and Rnase-L are among the half a dozen or so who have the highest levels on this board.

    My C3a is normal, but my C4a is over 13,000. We do not have mold. The rest of my Shoemaker tests were within normal range.

    I am not genetically one of those people who have a difficult time removing toxins.

    I test positive for Lyme and have re-elevated CMV, EBV, Parvovirus and HHV-6 levels.

  10. deliarose

    deliarose New Member

    did u do the R L Nase and elastase thru Redlabs?

    Those are some expensive tests if one needs to run them repeatedly.

    Thanks for posting yr results.
  11. redhummingbird

    redhummingbird New Member

    Thanks for posting your results. Are you treating the thick blood? My sed rate was also 2.

  12. frango2

    frango2 New Member

    deliarose- Yes, it was through Redlabs.... I haven't repeated it.

    Redhummingbird- I am on Nattokinase for the Sed rate issues.
  13. Slayadragon

    Slayadragon New Member

    Lots of interesting stuff on this thread!

    Thyroid problems are very strongly associated with toxic mold. This is discussed in basic mold literature.

    (For instance, "Mold: The War Within" by Kurt and Lee Ann Billings.)

    I tend to think that one way that all the hormones are related to CFS (which is increasingly seeming to me a disease of toxicity) is through the fat cells.

    Fat cells are used as a "safe" storage space for excess toxins. They aren't great there, but they don't do as much damage as in other parts of the body.

    This could be one reason why CFS sufferers often have problems losing weight. If the fat cells are sequestering toxins, the body's going to be loathe to have the fat go away since then the toxins will be "loose."

    Fat cells are strongly involved in the endocrine system too. If they are not working properly, it would make sense that our hormones (including possibly thyroid) would be messed up.

    Prior to pursuing mold avoidance, I took every hormone that I could get my hands on. If anything helped, they did.

    Over the past nine months (since starting mold avoidance), I've been able to taper off all of them.

    The T3 (thyroid) was the last to go. I even have full eyebrows now! (I never did even on thyroid supplements.)

    The methylation support I'm doing may have had an impact on this as well. I've been using that for about 15 months.
  14. Slayadragon

    Slayadragon New Member

    Some random thoughts regarding your first post:

    I think we talked about this a long time, but are you still of the opinion that mycotoxins or lyme toxins does not have the ability to cleave Rnase-L into LMW Rnase-L? (Obviously it wouldn't be doing it directly, but perhaps through a cytokine effect?)

    I keep going back to this one. Would you mind explaining your logic or giving me a reference?

    I feel certain that mycotoxin exposures cause inflammation for me. As one very strong effect, my TMJ gets horrendous if I've been around a lot of mold, but goes down to absolutely non-existent if I get clear enough.

    (I think my brain gets inflamed along with the TMJ, though I have yet to be able to figure out how to prove this.)

    C4a (complement) is an allergy-like component. With allergies, the body misidentifies a benign substance as dangerous and then overreacts. With mold toxicity, the body correctly identifies a dangerous substance and overreacts.

    (Obviously you know this. It's just prelude.)

    One phenomenon that seems clear in allergy theory is that of "allergic load." The body can handle a little bit of what it sees (incorrectly) as dangerous stuff. When it goes beyond a certain point, allergies to everything let go.

    For instance, I used to have bad hay fever. After I stopped drinking milk (which I think I have a slight "real" allergy to), the hayfever went away.

    I tend to think that when the complement goes out of control through mold exposures, it becomes overreactive to other stuff too. Food allergies would be amongst those.

    The other issue is that the mold seems to have the ability to tear up the intestinal system, creating leaky gut. That leads to food sensitivities too.

    Prior to mold avoidance, avoiding food allergens was one of the few things (along with hormone supplementation and yeast control) that helped me the most. I was in very bad shape if I didn't control them diligently.

    Now that I'm avoiding mold, I seem to be able to eat whatever I want without negative consequence. Erik says he has seen this in others as well. (For instance, his then-girlfriend had gluten problems but saw them go away entirely when she started doing his mold-avoidance stuff.)

    I wish that avoiding food allergens would allow my mold reactivity to go down, but it doesn't work that way.

    A similar effect is with my MCS. Prior to mold avoidance, my MCS was mild. Shortly after I started to try to avoid mold, the MCS went out of control. Now it's gone entirely. (Khaly and Erik report the same pattern.)

    I still try to avoid all chemicals, of course. It's just unfortunate that this does not seem to help me with my "primary" (the mold) any more than avoiding the food allergens does.
  15. Slayadragon

    Slayadragon New Member

    I am of the strong belief that when multiple people in a household (especially when they are of different ages and not all genetically related) get sick with similar mysterious illnesses, mold toxicity should be expected.

    Apart from the presence of an extremely virulent pathogen (the kind that would headline the nightly news), it's hard to think of a good alternative explanation for this type of phenomenon.

    How do you know you don't have mold??????

    Stachybotrys is impossible to rule out even when the best remediators and inspectors are used. The mold hides in walls where it cannot be found.

    It almost never shows up on air tests even when the amount in the air is enough to kill people. The mold releases its spores in waves, which means that the air can test clear for 23 3/4 hours per day and at a deadly level for 15 minutes.

    Stachy spores fall to the ground and disintegrate very fast. The particle fragments that remain are just as dangerous as the whole spores.

    Stachy's poison is extremely dangerous even when no spores are present. It soaks into all kinds of belongings and cannot be washed off. It can make its way through all kinds of walls even when there is no mold to be seen.

    The only way to know for sure whether you have mold is to have a mold-sensitive person visit you. If I go to a building that is poisoned with toxic mold (or especially stachy), I am aware of it instantaneously. (Dr. Shoemaker talks about being able to do this in his book.) This is the case even if the mold has no odor (usually not), cannot be noted visually and doesn't come up in lab tests.

    The only test that might be of any use is the ERMI, which does a DNA test of dust in a house. Dr. Shoemaker talks about it on his site,

    I am going to be traveling the country a bit over the next few months. If you let me know where you live, perhaps I might be able to come by and give you an assessment.

    Until then, you most certainly should not rule the possibility that you have a toxic mold problem out.

    If I had not ruled out the idea that I had a toxic mold problem in my absolutely beautiful home, I would be in much better shape now. The longer that mold exposure goes on, the harder it is to recover from it.

    Thank God I got out when I did.[This Message was Edited on 10/15/2008]
  16. Slayadragon

    Slayadragon New Member

    Dr. Guyer uses Rnase-L as a proxy for total viral activity.

    He used to use interferon-alpha in addition, but ImmunoSciences stopped doing that test.

    He doesn't pay a lot of attention to those viral titers, though he runs them on occasion.
  17. frango2

    frango2 New Member

    We have done mold inspection- actually, I owe you the name of a guy in the Chicago area. ( you and I were on a thread about that topic this summer ) I am in Minneapolis... if you are this way, which is not too far from you, let me know and I would love to have you come and see if you react...

    My son has a friend who has a severe mold allergy. He slept over at our house with no problems.

    We have even knocked out the wall in one area that we were a little suspicious about... it was bone dry.

    My husband is an environmental consultant, one of the things he specializes in ground water remediation. This can often lead to contamination in buildings so he is pretty vigilant about moisture in the house. You have to have moisture to have mold. He really does not think we have a mold issues.

    In light of the testing that we have done, looking behind the walls, and my sons friend, I think he is right.

    BUT, we could be all getting exposed to mold somewhere else.

    My mom lives in the south in a stucco house, perhaps that could be a place for exposure.

  18. Forebearance

    Forebearance Member

    Hi frango2 (are you a fan of those candies?),

    In reading this thread, one thing stood out for me.
    You said you don't have the genetic susceptibility to neurotoxins. So if your C4a level is that high, then something in your present environment is poisoning you like crazy!
    What could it be?? An active Lyme infection could explain it. Meaning that the Lyme bacteria are alive and producing toxins right now in your body.
    If you get rid of the source of poison, whatever it is, you should get well naturally. Unlike some of us who have the genetic susceptibility and need the help of detoxing supplements/drugs. Although I'm sure it would help anyone to get well faster to take those detoxing things.

    Do you have a work place that could have some kind of biotoxin in it?

    Like Slayadragon noticed, it is striking that several members of your family are sick. That must be a big clue.

    I hope you can figure things out for you and your family.

  19. frango2

    frango2 New Member

    Oh yes, the candies are good! Frango is our Chocolate Lab and we named her after Frango mints. In my neck of the woods we are still not over Macy's as a supposed 'replacement' for Marshall Fields. In fact, I am still boycotting it- there is no comparison.

    My Dr. who is very good thinks chronic Lyme. She is very familiar with Dr. Shoemakers theories and has tested me for all of the things he recommends. Everything except the C4a is normal.

    I saw the tick that bit me, had a rash, test positive for Lyme. My flares are still cyclical and my most problematic issues at this point are vestibular in nature, which I was always warned, may be permanent damage.

    Hy husband also saw the tick that bit him. My youngest tested positive for Erlichiosis- different tick borne illness than Lyme. We also have neighbors who test positive for Lyme and a couple who have co-infections.

    While we are all sick, we all test positive for different tick borne infections. We live in one of the most endemic states and have a wooded yard full of deer. No one is any where near as bad as I am, and I have the best 'genetic' makeup for dealing with these illness so I am quite certain they are tick borne.

    Believe me... I have gone down so many routes of questioning the nature of the illness and the roads always lead right back to Lyme. Having said that we are planning on looking into the possibility of issues in our master bathroom a little more closely. My husband is more concerned about Formaldehyde, which they use to treat lumber, than mold. I don't know how you test for that or what you would do if it was shown to be a problem other than move and in this market I am not up for that.

    [This Message was Edited on 10/17/2008]
    [This Message was Edited on 10/17/2008]
    [This Message was Edited on 10/17/2008]
  20. Forebearance

    Forebearance Member

    I see. So the fact that you're all sick means the ticks are thick.

    I'm eyeing the deer in the backyard here with suspicion! They stand by the compost pile and wait for me to bring them scraps! geez!

    I did not realize that Lyme was so bad in Minnesota! What a shame. I suppose Wisconsin is equally bad by now.

    I lived in St. Louis Park for three years in my younger days.

    I have not spoken to anyone before who was normal on all the Shoemaker tests except the C4a. So you don't even have the classic signs of neurotoxin poisoning. Hmmm. You must be a tough case to diagnose!

    Dr. Vrchota sounds really good. Maybe I'll go see her some day.

    I hope you will feel better in the near future.

    I have seen the top of the line Austin Health Mate air cleaner that says it is supposed to work on formaldehyde.


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