New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

HaleyBugs07
Regular Member


Date Joined Sep 2017
Total Posts : 36
   Posted 1/29/2018 6:09 PM (GMT -6)   
Anyone get a TGFB-1 test done and come back very high. This is Transforming growth factor beta 1 blood test. I am not even sure why they ran it. I am having it retested as there can be sensitivity in the result if not done properly. I know it means high inflammation and sometimes connected with mold issues.

k07
Veteran Member


Date Joined Sep 2015
Total Posts : 2556
   Posted 1/29/2018 6:51 PM (GMT -6)   
Mine was high but not sky high. Did you have any of the other mold tests like mmp9, msh, adh, vip, vegf?

Lapis_29
Veteran Member


Date Joined Sep 2017
Total Posts : 882
   Posted 1/29/2018 7:01 PM (GMT -6)   
/www.selfhacked.com/blog/tgf/

really great article there with tons of great info

HaleyBugs07
Regular Member


Date Joined Sep 2017
Total Posts : 36
   Posted 1/29/2018 7:09 PM (GMT -6)   
I did not have any other mold tests done. Just C4 which was in normal range.

Evanston1
Regular Member


Date Joined Jan 2017
Total Posts : 410
   Posted 1/29/2018 9:00 PM (GMT -6)   
Mine was sky high. Like 19000

Aerose91
Veteran Member


Date Joined Feb 2016
Total Posts : 581
   Posted 1/30/2018 7:31 AM (GMT -6)   
Mine is high and also a normal c4a, therefore my doctors moved away from biotoxin disease. However, my MSH is low, MMP-9 is high, ADH is low, and i have brutal exercise intolerance so my VEGF may be off. I'm thinking lately that my doctors missed this so I'm revisiting biotoxin disease

k07
Veteran Member


Date Joined Sep 2015
Total Posts : 2556
   Posted 1/30/2018 7:38 AM (GMT -6)   
Are you guys looking at complement c4a?

Aerose91-did they check VIP level? It can also cause out of breath. Do you have frequent urination with low adh?

Aerose91
Veteran Member


Date Joined Feb 2016
Total Posts : 581
   Posted 1/30/2018 11:53 AM (GMT -6)   
k07-

Yes my complement c4a was normal, c3a was low. I did have VIP checked and that was normal so i habe some things that fit into Dr Shoemaker's CIRS and others that don't. Kinda confusing

HaleyBugs07
Regular Member


Date Joined Sep 2017
Total Posts : 36
   Posted 1/30/2018 12:13 PM (GMT -6)   
Yes normal c4a. They have not checked any of the other functions that go along with the biotoxin CIRS protocol. I am retesting the TGF-b1 again. I don't think the person I am seeing really knows much about it. They told me if high they would refer out to a Hematologist to make sure everything else if ok. But the majority of my bloodwork has come back normal except high b12 and bilirubin.

Psilociraptor
Veteran Member


Date Joined Jul 2016
Total Posts : 1355
   Posted 1/31/2018 9:08 AM (GMT -6)   
Mine was very high. 22,000. My C4a was also normal. I have big issues with running these tests for mold illness. These are all basic immune mediators and their use as diagnostic markers has been poorly explored. Even if people with mold illness all have these markers it doesn't mean that all people with these markers necessarily have mold illness. I did a lot of expensive renovation for mold and treatment to no avail. I now work in a super super moldy work environment, and while I'm sure it's not healthy, my health hasn't obviously declined. The only thing that helps me is Lyme treatment and the only thing that hurts me noticeably is not treating Lyme. I do believe molds can be problematic, I'm just very skeptical about the use of nonspecific immune markers to diagnose mold illness. All TGF-beta1 tells you is that you have some whacky stuff going on with your immune system. It doesn't say what's causing it. If Shoemakers work has any credibility then it's only in the context of clinical diagnosis and thorough patient intake as supportive laboratory work. Maybe that's the intended purpose, but that's not how i've noticed it being used online and in my personal experience. Using it as the primary evidence for diagnosis is seriously sketchy imo.

k07
Veteran Member


Date Joined Sep 2015
Total Posts : 2556
   Posted 1/31/2018 10:18 AM (GMT -6)   
I think these markers are indicators of biotoxin illness - which can be mold OR lyme (and other things). I am currently following the Shoemaker protocol in hopes of correcting this dysfunctional loop that my body seems to be stuck in. I recently did 10 doses of desmopressin (every other day) and am now having nights where I don't have to urinate. It doesn't seem to be consistent at this point, but I NEVER had a night prior to this where I wasn't waking up a few times at least. My ADH level was not detectable prior to supplementation. I am retesting levels in 15 days. I don't really know or care if it is lyme or mold, just want to see if I can get these things corrected.

I too had some of the Shoemaker labs be normal and some abnormal. My MSH, which is supposedly one of the big ones for mold, was 40. Kinda low but not under 35 which is what Shoemaker uses.

I was undetectably low in VIP. VIP seems to be a big one for supporting hormone levels, correcting inflammatory response and regulating the immune system. I need to get a clean MARCoNs test and then I'll be on to VIP.

HaleyBugs07
Regular Member


Date Joined Sep 2017
Total Posts : 36
   Posted 1/31/2018 11:58 AM (GMT -6)   
Mine was 18,000. I agree all of these tests cannot diagnose anything specific. As my doctor explained an indication of inflammation which can be mold or lyme. There is nothing in our house with mold or never had any leaks or flooding plus the house is not all that old. Also, I am very sensitive to smells and do not smell anything musty that would indicate mold.

I guess I will see what the new re-test reveals.

Joe183288
Regular Member


Date Joined May 2017
Total Posts : 68
   Posted 2/7/2018 8:27 AM (GMT -6)   
hey, I need some opinions/help on my tests...

I had all the shoemaker tests done this last may. The two that came back really high were c4a(9,799) and TGFB-1(10,360), everything else shoemaker recommends were normal. I just tested both of these again in December and the numbers are still high but decreased a lot( TGFB-1-6,420, c4a-6,401)

I've been treating for Lyme pulsing Dr J protocol since last January. I finish up with this treatment in about a month. My symptoms have gotten somewhat better but I'm almost positive I won't be back to my old self when treatment has completed. By far my worst symptom is brain fog(concentration issues, short term memory issues, hard to listen and learn, I just feel drunk all the time) I feel like the brain fog not only causes the brain fog issues, but also causes my depression among other things.

I do want to mention what else I have tested positive for in the past: lyme-per igenex test, EBV, mycoplasma, toxoplasma

I've also done stool test, mold test, food allergy test, heavy metals, and pretty much all the other tests you can take with all coming back negative. I did try a myxtoxin spray for 30 days a little while back.

Like I said I am feeling better than I did a year ago(my mood I would say is the biggest improvement). If I could just get rid of my brain fog I would be satisfied as that is 90% my issue. I still work and am very functional but the brain fog is ruining my life. Sorry for the long post and maybe I should have made this a new post all together I'm just feeling down because I'm finishing up this long treatment and I'm not feeling like I was hoping I would.

k07
Veteran Member


Date Joined Sep 2015
Total Posts : 2556
   Posted 2/7/2018 9:54 AM (GMT -6)   
Joe183288 said...
hey, I need some opinions/help on my tests...

I had all the shoemaker tests done this last may. The two that came back really high were c4a(9,799) and TGFB-1(10,360), everything else shoemaker recommends were normal. I just tested both of these again in December and the numbers are still high but decreased a lot( TGFB-1-6,420, c4a-6,401)

I've been treating for Lyme pulsing Dr J protocol since last January. I finish up with this treatment in about a month. My symptoms have gotten somewhat better but I'm almost positive I won't be back to my old self when treatment has completed. By far my worst symptom is brain fog(concentration issues, short term memory issues, hard to listen and learn, I just feel drunk all the time) I feel like the brain fog not only causes the brain fog issues, but also causes my depression among other things.

I do want to mention what else I have tested positive for in the past: lyme-per igenex test, EBV, mycoplasma, toxoplasma

I've also done stool test, mold test, food allergy test, heavy metals, and pretty much all the other tests you can take with all coming back negative. I did try a myxtoxin spray for 30 days a little while back.

Like I said I am feeling better than I did a year ago(my mood I would say is the biggest improvement). If I could just get rid of my brain fog I would be satisfied as that is 90% my issue. I still work and am very functional but the brain fog is ruining my life. Sorry for the long post and maybe I should have made this a new post all together I'm just feeling down because I'm finishing up this long treatment and I'm not feeling like I was hoping I would.

This can be so many things. Testing is not always the best. Have you tried liposomal glutathione. I felt like it helped my brain some. Binders? Heavy metal tests - what type? Genetics? Maybe even emf’s? You can consult with Tree of Life on genetics - not too expensive but supplements can add up.

Joe183288
Regular Member


Date Joined May 2017
Total Posts : 68
   Posted 2/7/2018 12:29 PM (GMT -6)   
thanks for your reply. umm I don't think I've tried liposomal glutathione, I'll look into that. as for binders I tried cholestyramine for a short time. I thnk only for a week though, so maybe I need to try that again? I do a lot of other things but not sure it's considered binders. Enula microbial defense, burbur-pinella detox brain nerve cleanse, motherwort extract. I did have the heavy metals test done and I believe it was through Geneva if they have one. I had a 23 and me genetics test done and because of that I am having a test ran. I can't remember exactly what the test is but the dr should be getting it back within the next week or two. She said my genetics had a ffew things off but nothing crazy, but this test I had taken could tell us a lot more. I'm not sure what an emf is?

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 2041
   Posted 2/7/2018 12:55 PM (GMT -6)   
HaleyBugs07 said...
Anyone get a TGFB-1 test done and come back very high. This is Transforming growth factor beta 1 blood test. I am not even sure why they ran it. I am having it retested as there can be sensitivity in the result if not done properly. I know it means high inflammation and sometimes connected with mold issues.


When my CIRS baseline labs were done, my TGFB-1 was almost 27,000. Some of my other CIRS labs were normal and some were abnormal. My TGFB-1 was retested 2 months after leaving my moldy home and workplace and was then normal at 1,481. NOTE: My symptoms did NOT improve after getting away from the mold. In fact, they got much worse. It was 7 months before I started to feel any symptom relief. I was and still am very toxic.

Two months after the normal TGFB-1 result, I was retested again. Unfortunately, I had just come from a very moldy dentist office right before the retest labs were drawn, and that time my TGFB-1 was elevated again at around 4,400. Shoemaker has said that just a few minutes of mold exposure can elevate those results. TGFB-1 can be elevated due to exposure to other biotoxins as well and even in other illnesses. Do your homework. Read everything you can find on www.survivingmold.com, especially the Q&A's. You can learn a lot if you want to.

At baseline, my VIP was normal and MSH was low at 19. Months later after trying minocycline for 7 days to treat Lyme and ehrlichia and having to stop due to symptom exacerbation, my MSH plummeted to less than 8. I did not have VIP retested. I just retested yesterday for TGFB-1, C4a, C3a, MSH, and VEGF.


It is not necessary for all the CIRS labs to be abnormal. It is best to be evaluated by a doctor certified or at least fully trained in the Shoemaker protocol for best results. I'm getting the impression that a lot of doctors are trying to kinda sorta halfway follow his protocol without any solid knowledge or understanding of his work and no consultation with him. Those doctors are not likely to get successful results and can get patients more lost and confused than they already are IMO.
New Topic Post Reply Printable Version
Forum Information
Currently it is Tuesday, August 21, 2018 5:13 PM (GMT -6)
There are a total of 2,995,209 posts in 328,210 threads.
View Active Threads


Who's Online
This forum has 161321 registered members. Please welcome our newest member, livin'life.
319 Guest(s), 14 Registered Member(s) are currently online.  Details
Alcie, tedgard, mattamx, netsavy006, Michael_T, Amy12170485196, HitchHiker, 18yearsandcounting, InTheShop, garyi, UCer23, Nowitshell, BOB 46, lapilot