philamom Posted June 14, 2011 Report Posted June 14, 2011 Anyway, the company emailed me saying they are having quality control issues with the futhan method. It just needs to go to NJC (National Jewish). Which I'm not even certain that happened. FYI - just received bill from NJH for the C3a/C4a tests - $159 (~$80 each). You have to pay up front and try to get reimbursed by insurance. Your daughter is a trooper! Good to know - thanks!
susie Posted June 14, 2011 Report Posted June 14, 2011 Anyway, the company emailed me saying they are having quality control issues with the futhan method. It just needs to go to NJC (National Jewish). Which I'm not even certain that happened. FYI - just received bill from NJH for the C3a/C4a tests - $159 (~$80 each). You have to pay up front and try to get reimbursed by insurance. Your daughter is a trooper! So did labcorp automatically send these to National Jewish? My daughter had these run several months back and they went to Cambridge Biomedical. Both C3a and C4a were within normal limits, while she had decreased MSH, low VIP, low ADH, and TGF-b1 on the upper end of normal range. MMP-9 was normal. Our docs (2 of them), took this to mean that there was not a mold problem. When I mentioned that it was strange that the MSH, VIP, and ADH all looked like inflammatory mold or lyme illness, yet the C3a and C4a were normal, she said "they're all coming back that way". Makes me question whether labcorp was doing the test correctly at that time and if we were to re-draw now would it be different. I wish Dr. Shoemaker's website was up to date regarding how to do these labs and where to make sure they are processed.
philamom Posted June 14, 2011 Report Posted June 14, 2011 Anyway, the company emailed me saying they are having quality control issues with the futhan method. It just needs to go to NJC (National Jewish). Which I'm not even certain that happened. FYI - just received bill from NJH for the C3a/C4a tests - $159 (~$80 each). You have to pay up front and try to get reimbursed by insurance. Your daughter is a trooper! So did labcorp automatically send these to National Jewish? My daughter had these run several months back and they went to Cambridge Biomedical. Both C3a and C4a were within normal limits, while she had decreased MSH, low VIP, low ADH, and TGF-b1 on the upper end of normal range. MMP-9 was normal. Our docs (2 of them), took this to mean that there was not a mold problem. When I mentioned that it was strange that the MSH, VIP, and ADH all looked like inflammatory mold or lyme illness, yet the C3a and C4a were normal, she said "they're all coming back that way". Makes me question whether labcorp was doing the test correctly at that time and if we were to re-draw now would it be different. I wish Dr. Shoemaker's website was up to date regarding how to do these labs and where to make sure they are processed. I'm not really sure where they sent it to. I called the lab today and they told me the carrier that picks it up knows where to send it to, but they had no idea. When I told them it would have to be done again if it was not sent to the Jewish Lab, she got huffy and said they send it where the computer tells them to. Arrgh...just make a phone call and let me know! I guess I'll just wait until I get the results. The email I received today said it has to be done at the Jewish Lab ONLY. I don't know if Cambridge is the Jewish Lab (doesn't sound like it). Also, on Shoemakers website there is a section that tells you HIS reference range for results...it's not the same as LabCorp/Quest. I agree with him needing to update his website!
JuliaFaith Posted June 14, 2011 Author Report Posted June 14, 2011 (edited) Anyway, the company emailed me saying they are having quality control issues with the futhan method. It just needs to go to NJC (National Jewish). Which I'm not even certain that happened. FYI - just received bill from NJH for the C3a/C4a tests - $159 (~$80 each). You have to pay up front and try to get reimbursed by insurance. Your daughter is a trooper! So did labcorp automatically send these to National Jewish? My daughter had these run several months back and they went to Cambridge Biomedical. Both C3a and C4a were within normal limits, while she had decreased MSH, low VIP, low ADH, and TGF-b1 on the upper end of normal range. MMP-9 was normal. Our docs (2 of them), took this to mean that there was not a mold problem. When I mentioned that it was strange that the MSH, VIP, and ADH all looked like inflammatory mold or lyme illness, yet the C3a and C4a were normal, she said "they're all coming back that way". Makes me question whether labcorp was doing the test correctly at that time and if we were to re-draw now would it be different. I wish Dr. Shoemaker's website was up to date regarding how to do these labs and where to make sure they are processed. The blood was drawn at labcorp but Dr. D asked them to send the C3a/C4a to the National Jewish Health (with a phone call). They had done it before and it was not a big deal. It did have to be timed correctly. NJH would not accept deliveries on Fridays. Dr. D had a phone consult with Dr. Shoemaker too. Edited June 14, 2011 by JuliaFaith
JuliaFaith Posted June 14, 2011 Author Report Posted June 14, 2011 Also, on Shoemakers website there is a section that tells you HIS reference range for results...it's not the same as LabCorp/Quest. I agree with him needing to update his website! I heard somewhere (oh -- in Dr. Shoemakers book ) that labs sometimes change their reference ranges based on odd reasons so would look at Dr. Shoemaker ranges first.
philamom Posted July 13, 2011 Report Posted July 13, 2011 Just received some of my daughter's Shoemaker lab results from Lab Corp: TGF Beta-1 (Transforming Growth Factor) is 5260. Normal range is <2380. *TGF Beta-1 can impair T-regulatory cell function, which in turn contibutes to the activation of autoimmunity, yet TGF Beta-1 also plays a role in suppressing autoimmunity(!). MSH (Melanocyte Stimulating Hormone) is 32. It says Critical... even though Ref Range is 35-81. VIP (Vasoactive Intestinal Polypeptide) is 21.1. Normal range is 23-63. Can anyone give me their thoughts on this.
JuliaFaith Posted July 13, 2011 Author Report Posted July 13, 2011 Just received some of my daughter's Shoemaker lab results from Lab Corp: TGF Beta-1 (Transforming Growth Factor) is 5260. Normal range is <2380. *TGF Beta-1 can impair T-regulatory cell function, which in turn contibutes to the activation of autoimmunity, yet TGF Beta-1 also plays a role in suppressing autoimmunity(!). MSH (Melanocyte Stimulating Hormone) is 32. It says Critical... even though Ref Range is 35-81. VIP (Vasoactive Intestinal Polypeptide) is 21.1. Normal range is 23-63. Can anyone give me their thoughts on this. These are just my notes on the LabCorp sheet: -TGF-b1 affects the lungs and a gluten-free diet is recommended until numbers are lowered. (My son's was 9860 and he is being treated for 2 pneumonias in his lungs) -MSH----MaRCONS can destroy this. Dr. S says if this is below 35 and C4a is less than 20,000 you need a ERMI '2' or lower score on mold test -VIP----Inflammation develops in periphery (not brain) could result in inflammation that is attached to production of regulatory harmones - MSH, VIP Hope you have a good doctor to discuss these results. My dr. actually had a phone consult with Dr. Shoemaker about some of the test results (may have been the DNA part). DS is on 3rd month of MaRCONS spray (BEG spray-with positive deep nasal culture) and on 2nd month of VIP spray along with many other remediations for mold removal/remodel in our home. We found a bit of mold but not much and we are almost done. There were some questionable yellow dots on the back of a painting that had spent 3 yrs. in S. AFrica. Best wishes on treatment!
philamom Posted July 13, 2011 Report Posted July 13, 2011 Just received some of my daughter's Shoemaker lab results from Lab Corp: TGF Beta-1 (Transforming Growth Factor) is 5260. Normal range is <2380. *TGF Beta-1 can impair T-regulatory cell function, which in turn contibutes to the activation of autoimmunity, yet TGF Beta-1 also plays a role in suppressing autoimmunity(!). MSH (Melanocyte Stimulating Hormone) is 32. It says Critical... even though Ref Range is 35-81. VIP (Vasoactive Intestinal Polypeptide) is 21.1. Normal range is 23-63. Can anyone give me their thoughts on this. These are just my notes on the LabCorp sheet: -TGF-b1 affects the lungs and a gluten-free diet is recommended until numbers are lowered. (My son's was 9860 and he is being treated for 2 pneumonias in his lungs) -MSH----MaRCONS can destroy this. Dr. S says if this is below 35 and C4a is less than 20,000 you need a ERMI '2' or lower score on mold test -VIP----Inflammation develops in periphery (not brain) could result in inflammation that is attached to production of regulatory harmones - MSH, VIP Hope you have a good doctor to discuss these results. My dr. actually had a phone consult with Dr. Shoemaker about some of the test results (may have been the DNA part). DS is on 3rd month of MaRCONS spray (BEG spray-with positive deep nasal culture) and on 2nd month of VIP spray along with many other remediations for mold removal/remodel in our home. We found a bit of mold but not much and we are almost done. There were some questionable yellow dots on the back of a painting that had spent 3 yrs. in S. AFrica. Best wishes on treatment! Julia- I'm away with limited internet service. I do not have the results in front of me--only received some information via hubby. He said the C3/C4 was normal but not sure if it was done by the Jewish Lab until I see a copy. The C3A is 115.2 and C4A is 180.4. I do not have a doctor familar with any of this. I just asked asked a physician to sign off on the lab sheet. Lab Corp said the results go to Shoemaker's office. I asked for a copy as well at the time of the blood draw. I was really hoping all this would be negative! When I get home I plan to run the ERMI test and the KPU urine test. Two other results are creative protein at .3 and ACTH at 20.5 (both normal I think). I also got the results of the HLA but my hubby couldn't understand it...but we already know she is HLA DR4 positive from Dr. J. thx
JuliaFaith Posted July 14, 2011 Author Report Posted July 14, 2011 Julia- I'm away with limited internet service. I do not have the results in front of me--only received some information via hubby. He said the C3/C4 was normal but not sure if it was done by the Jewish Lab until I see a copy. The C3A is 115.2 and C4A is 180.4. I do not have a doctor familar with any of this. I just asked asked a physician to sign off on the lab sheet. Lab Corp said the results go to Shoemaker's office. I asked for a copy as well at the time of the blood draw. I was really hoping all this would be negative! When I get home I plan to run the ERMI test and the KPU urine test. Two other results are creative protein at .3 and ACTH at 20.5 (both normal I think). I also got the results of the HLA but my hubby couldn't understand it...but we already know she is HLA DR4 positive from Dr. J. thx The C3a Range 0-940 (lower the better) lyme indicator (my ds was 157 and his HLA indicated post-lyme) C4a Range 0-2,830 (lower the better) mold indicator (my ds was 2,632 and we are treating mold illness with Chlorella/VIP nasal spray) The HLA is difficult to read...son's dr. did say that everyone has something come back on these but that does not necessarily mean you will have any problems.
philamom Posted July 19, 2011 Report Posted July 19, 2011 Okay, I now have the actual test results in front of me. It seems the Complement C3a & C4a were not done through the jewish lab (arrgh). But, I'm thinking since the C4A is low (180), this is not necessarily screaming mold to me, and the low level MSH points to inflammation...right?? The only comments noted on the results are: 1) HLA- In the context of a transplant, LabCorp strongly urges timely consultation with an HLA knowledgable transplant physician. 2) Melanocyte Stimulating Hormone- 32 Critical (written in red)...but the reference interval is 0-40. And not really sure what to make of the increased TGF? My dd has no asthma or lung issues. How does one go about getting tested for Marcons? That's the really deep nasal culture - right? ~thx
JuliaFaith Posted July 19, 2011 Author Report Posted July 19, 2011 Okay, I now have the actual test results in front of me. It seems the Complement C3a & C4a were not done through the jewish lab (arrgh). But, I'm thinking since the C4A is low (180), this is not necessarily screaming mold to me, and the low level MSH points to inflammation...right?? The only comments noted on the results are: 1) HLA- In the context of a transplant, LabCorp strongly urges timely consultation with an HLA knowledgable transplant physician. 2) Melanocyte Stimulating Hormone- 32 Critical (written in red)...but the reference interval is 0-40. And not really sure what to make of the increased TGF? My dd has no asthma or lung issues. How does one go about getting tested for Marcons? That's the really deep nasal culture - right? ~thx Hi Philamom -- Just read in Dr. S's book that C3a "tells us indirectly about bacterial membranes present in blood." For the C4A Dr. S says that "any test result over 2800 is of concern" but my son's dr. said my son's was probably much higher at one time but with treatment has gone done. The transplant comment is because these tests are used for that purpose as well. It does not mean your child needs a transplant. MSH -- The range I wrote on my lab results is (35-81) not 0-40. I believe this is one Dr. S changed because the Lab changed it for some obscure reason. In Dr. S book he says that "there is a reduction in blood flow in the small blood vessels, called capillaries, all because of some increase in TGF beta-1... or C4A or in any combination, we'll see the capillary beds responding with a message that says..."hey, we're not getting enough oxygen, we have hypoxia, so something. Now!" This is taken out of context so take it as it is. MARCons Spray -- Made out of EDTA (dissolves biofilm) and Antibiotics. My son is also drinking 3-4 glasses of rock rose tea a day to destroy biofilm. His ND wanted the ENT to do the deep nasal culture while my son was getting T&A. The ENT agreed but did not prescribe the BEG spray and monitor treatment, my son's ND did that.
philamom Posted July 20, 2011 Report Posted July 20, 2011 Thanks JuliaFaith for the explanations. Sometimes I think I need a (mind) transplant, especially when trying to figure this out right before bedtime. The spray is a prescription?
lmi1973 Posted July 20, 2011 Report Posted July 20, 2011 Hi, we are in a dilemma as to how to treat the MARCONS now as my son seems to be unable to tolerate the BEG spray:(! ds's lyme doctor prescribed the BEG spray for his MARCONS and we received the spray last week. My son, who is 10 and weighs 80 lbs. said it burned terribly. He literally had tears streaming down his face after using it. It is cold/refrigerated, it's like he would spray it and then in about three seconds would start howling in pain, like a delayed reaction and he would just scream that it's burning! I was trying to have him spray once per nostril 2x/day, is this right? My LLMD and I were just guessing. I wonder if this needs to be dilluted for age/weight? LLMD just called the script into H. Drugs and it was directly shipped to us. I got him to do about 3 doses, but that's all. I don't know what to do to treat the MARCONS now because I basically talked the LLMD into prescribing the BEG spray. Any suggestions? Can we dilute the BEG spray? I read another mixture of xylitol and salt in the neti pot can help clear MARCONS, but my son said this hurts terribly too. He doesn't have a high pain tolerance, but, he's always been able to take flonase nasal sprays and regular neti pot solutions without complaint. Also, we got the MSH results back: 17; I want to have LLMD write script for VIP spray to increase this, but, it sounds like this isn't supposed to be used until MARCONS issues are resolved, which I'm not sure how to do now... I'm also scared that ds won't be able to tolerate the VIP spray like the BEG spray. Are there any other ways to increase MSH levels? We haven't had the whole panel run; just the MSH. It's my understanding that low MSH is a sign that his body can't clear out toxins properly?... I'm having ds take activated charcoal on empty stomach in mornings to help bind/clear toxins, but don't consistently get this in him as his stomach is upset every morning it seems like and he doesn't want to take pills. But, maybe three or four days/week I can get the charcoal in him and we do epsom salt baths every night. I think I could get son's doctor to write rx for cholesterol med, but have also read that not many people can tolerate this, and with my son's stomach issues from all the abx, I'm scared to throw this in. Thanks for any suggestions on the MARCONS anyone might have. I did read some notes online from the Klinghardt conference about a homemade urine nasal spray, but, my son said no way in ###### could he do it!
JuliaFaith Posted July 20, 2011 Author Report Posted July 20, 2011 Thanks JuliaFaith for the explanations. Sometimes I think I need a (mind) transplant, especially when trying to figure this out right before bedtime. The spray is a prescription? I hear you on the transplant thing! BEG spray is a prescription with Hopkinton Drugs. My son had to spray it in both nostrils 4 times a day for 3 months (he is almost done). He does say that it burns every time he uses it. Did hear that another mom only used it for 1 1/2 months so should talk to dr. about this. My son is over 120 lbs.
JuliaFaith Posted July 20, 2011 Author Report Posted July 20, 2011 Hi, we are in a dilemma as to how to treat the MARCONS now as my son seems to be unable to tolerate the BEG spray:(! ds's lyme doctor prescribed the BEG spray for his MARCONS and we received the spray last week. My son, who is 10 and weighs 80 lbs. said it burned terribly. He literally had tears streaming down his face after using it. It is cold/refrigerated, it's like he would spray it and then in about three seconds would start howling in pain, like a delayed reaction and he would just scream that it's burning! I was trying to have him spray once per nostril 2x/day, is this right? My LLMD and I were just guessing. I wonder if this needs to be dilluted for age/weight? LLMD just called the script into H. Drugs and it was directly shipped to us. I got him to do about 3 doses, but that's all. I don't know what to do to treat the MARCONS now because I basically talked the LLMD into prescribing the BEG spray. Any suggestions? Can we dilute the BEG spray? I read another mixture of xylitol and salt in the neti pot can help clear MARCONS, but my son said this hurts terribly too. He doesn't have a high pain tolerance, but, he's always been able to take flonase nasal sprays and regular neti pot solutions without complaint. Also, we got the MSH results back: 17; I want to have LLMD write script for VIP spray to increase this, but, it sounds like this isn't supposed to be used until MARCONS issues are resolved, which I'm not sure how to do now... I'm also scared that ds won't be able to tolerate the VIP spray like the BEG spray. Are there any other ways to increase MSH levels? We haven't had the whole panel run; just the MSH. It's my understanding that low MSH is a sign that his body can't clear out toxins properly?... I'm having ds take activated charcoal on empty stomach in mornings to help bind/clear toxins, but don't consistently get this in him as his stomach is upset every morning it seems like and he doesn't want to take pills. But, maybe three or four days/week I can get the charcoal in him and we do epsom salt baths every night. I think I could get son's doctor to write rx for cholesterol med, but have also read that not many people can tolerate this, and with my son's stomach issues from all the abx, I'm scared to throw this in. Thanks for any suggestions on the MARCONS anyone might have. I did read some notes online from the Klinghardt conference about a homemade urine nasal spray, but, my son said no way in ###### could he do it! Since your dr. is willing to treat, he may want to get Dr. S new DVDs for training doctors in his protocol (and for patients) which can be ordered on his website. I bought his book "Surviving Mold" and so I get newsletters monthly. The book cost less on his website than other places. You might want to call the pharmacist at Hopkinton. He told me that the spray should not get over 70 degrees (I believe) so it does not have to be refrigerated under the right circumstances. My son also said it burns but he has been doing it for almost 3 mos. now. He stops taking it this week. My son (over 120 lbs.) does it 4 times a day in both nostrils. Ds started using VIP spray 1 month after starting the BEG spray when we found out that thru ERMI test that mold was in the home. He takes the VIP spray 4 times a day but on alternate nostrils (only 1 side at a time). He is on this for 3 months as well. On my own notes on LabCorp results I wrote "MARCoNS destroy MSH". This was probably after doing some research somewhere so not sure how accurate. Another family I know, their son had staph in his sinuses and his ENT blasted the infection out of his sinuses and then used abx spray. Not sure if the biofilm is still there after this procedure. He was probably put to sleep. You may want to be looking for possible mold in your home as well. If there is mold, it will be difficult for your child to heal. I believe Dr. S only prescribes the VIP patient if removed from mold exposure. We are at the end of cleaning our home (and everything in it) in case of cross-contamination when mold was removed from our house. We are also remodeling the kitchen/bath in case there is mold. We found mold in both places that we had no idea wwas there. We are burned out but my son is getting better!
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