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Tgf beta 1 levels are high, anybody else had theirs tested?

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Posted 6/4/2013 3:24 AM (GMT 0)
Hello fellow Lymies. I was curious if anyone has high TGF B1 levels? I just found out that I do which may be contributing to my pain issues. I also read that it can be due to Mold Sickness. Does anybody have elevated levels and can they be addressed in some way? My LLMD us starting me on Cholestyramine to try and draw some of the toxins out of my system as well. Any comments on TGF B1 or Cholestyramine would be great to read.
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Posted 6/4/2013 7:32 AM (GMT 0)
Hi Lymebean,

MEEEEEE! lol

it's been a while since I was tested (about 1 year ago), but that's what I had in the past. I had 2142 (ref range is 0,00-290,00). I had to refresh what I knew (past time - lol).

(my TGF Beta1 mRNA is within range though, it wasn't in the past, but it is now)

Dr Shoemaker says that in chronic Lyme patients, this marker is increased by elevated levels of toxins. Long-term exposure to toxins also disrupts the balance of hormones and endorphins. As a result, these people become much more sensitive to pain, get tired much more quickly, and feel overwhelmed by normal sounds, lighting, or smells. These patients often need extra help in removing toxins.

I copied this from this link, there's much more information on it: http://goodbyelyme.com/free-articles/detoxification/remove_toxins

I had this test done before I started Lyme treatment. I'm curious to know what my incapability to detox has done to it. Maybe it's better to not know - lol.

Marie

Posted 6/5/2013 8:40 PM (GMT 0)
Hi Marie LS,
Thanks for the response. It is good to know that elevated levels mean excess toxins as that us what I am currently treating with Cholestyramine. My melanocytes stimulating hormone level is low also which I understand is another sign of toxin buildup issues. My TGF B1 was 6967 which is pretty high. I'll probably have it checked again after I have been on Cholestyramine for 8 weeks. We'll see if it goes down. Please post your results if you get your levels retested again.
Posted 8/5/2014 7:40 PM (GMT 0)
I was just diagnosed with mold exposure and my tgf was 14220? which apparently sounds crazy. I'm trying to understand what exactly this means and if it could be signalling something other than mold exposure. How are you guys now?
Posted 8/5/2014 8:20 PM (GMT 0)
Still treating, no amelioration though. My pain levels have gone down due to taking LDN, which makes your body produce more endorphins (in short).

I have not been tested on tgf beta1serum lately. I'm seeing my dr next week, will see what he says....
Posted 3/10/2016 6:48 PM (GMT 0)
My TGF-b1 is 19220 pg/mL . Outrageously high.

How are you all doing? Any updates?
Posted 3/10/2016 8:41 PM (GMT 0)
My TGF-b1 was 12,480 or something. My MSH was low, which all indicate mold sickness and toxin overload. I was on welchol for a few months than cholesteryamine for a month or so. I didn't feel much difference, I am going to ask my doctor to retest my TGF-b1, MSH and other markers for mold testing. I may need to go back on cholesteryamine.

Has anyone taken anything ELSE other than cholesteryamine or welchol to remove mold from the body? Of course removing mold if you are in a mold infested house is step #1, but I'm wondering what are the other steps to remove mold. I'm quite certain mold is a big player in my being sick.
Posted 3/11/2016 4:05 PM (GMT 0)
DaveNJ41, what are your symptoms?
Posted 3/11/2016 4:09 PM (GMT 0)
Planny- it's s hard to say what are mold symptoms vs. lyme vs. bart vs. anything else. I have bad anxiety, constantly, nerve pain in my feet and goes up to my legs and other parts sometimes, palpitations, joint pain in shoulders and knees and sometimes lower back, terrible fatigue, gut problems, difficulty focusing and concentrating, restlessness. that's all I can think of right now.
Posted 3/11/2016 4:57 PM (GMT 0)
Completely Understand you, DaveNJ41. I have 99% of Lyme symptoms in addition to high TGF-b1 and low MSH....

but my doctor thinks tha the reason my TGF is hight and MSH is low is because I have neuro-toxic illness caused by lyme. I do not have exposure to the mold. Unless my old house had mold and I was not aware of it. But neither my husband nor my daugter are sick but me...
Go figure...
So, I am being treated for Lyme...
Good Luck to you and all of us!!! We are all at the same boat tryign to ride to become healthy agian!
Posted 9/1/2016 8:51 PM (GMT 0)
I just found out that my tgf-B1 is 11920! I read an article that that is more than high. I do have Lyme disease (Positive Igenex test) but is it because of Lyme? Or is it because of mold?

I'm a little confused by some of the replies.

Thank you for your help!
Posted 9/1/2016 9:53 PM (GMT 0)
Hi LadyVMAC

I'm sorry, I can't answer your question about Tgf beta 1 levels...I'm not familiar with that.

But, I wanted to welcome you to our community!

We have a large group of people here, so I bet someone will be on here soon to post and give you some information.

We suggest that all new members take a look through the thread at the top of the page titled: "New to Lyme?..Start Here!" It's packed full of useful information.


Hope you stick around to read, post, ask any questions that you have...
Posted 9/1/2016 10:33 PM (GMT 0)
"these people become much more sensitive to pain, get tired much more quickly, and feel overwhelmed by normal sounds, lighting, or smells. These patients often need extra help in removing toxins."

What does TGF stand for and how is it tested? I was reading Marie's excerpt and thought all of those symptoms are me. But before Lyme.

Thanks.
Posted 9/6/2016 4:51 PM (GMT 0)
Thank you Girlie!
Posted 9/6/2016 5:16 PM (GMT 0)
I really don't know much at all about mold issues, but I do know that elevated TGF beta 1 levels are highly suggestive of mold or possibly nasal staph issues, even if the person has Lyme.

This article might bring some things to light: www.betterhealthguy.com/biotoxin-illness-conference-2011
Posted 9/6/2016 6:11 PM (GMT 0)
Huddie - you may want to get tested through realtime labs. They offer a good urine mycotoxin test. Unfortunately it's $700 but your insurance may pick up some.
Posted 9/6/2016 11:00 PM (GMT 0)
I have high TGF Beta1, low MSH and other issues related to mold/post lyme. I was multi-susceptible on my gene test, which means I don't do a good job of removing any biotoxin, be it from mold or Lyme or any of these other pesky infections... My C4a was normal, which is an indication of current moldy environment. that was good news. After 8 weeks on CSM, my VCS test had improved and my VIP returned to normal... MSH sadly dropped further, and I am waiting on the other results... the updated TGF Beta1, MMP-9, VEGF etc.

I feel CSM has helped me a lot, but I am not fully clearing, which means I am still having bacterial issues since my mold exposure is normal... we did test our house and thank goodness it was clean. My work was not tested, but I don't feel sick at the office at all.
Posted 9/9/2016 3:20 AM (GMT 0)
Thanks for the link Traveler!
Posted 9/9/2016 4:49 PM (GMT 0)
I hope you find it helpful!!
Posted 9/13/2016 9:03 PM (GMT 0)
When I was first diagnosed with Chronic Lymes' (via CD-57) my TGF-B1 level was at 3500 (normal is 344-2382). This was March 2016 (I had been symptomatic for 2 years prior). While on antibiotic treatments (which lasted roughly 8-10 weeks) my level was measured at 2960. First measurement after the antibiotics were finished I was at 5240. Last reading, which was Aug 19th, my TGF-B1 was now up to 17,780. So it can definitely climb. My Lymes was complicated by MTHFR (heterozygous) so I am currently treating with weekly injections of Glutathione and Vit B12. I'll spare you the long story, just thought the TGF-B1 numbers might be helpful to someone. Luckily, my level of discomfort has climbed as fast as these numbers!
Posted 9/13/2016 9:07 PM (GMT 0)
Welcome to our community, Dale L.

I'm sorry you have Lyme Disease, but glad you found us here.

Since you stopped antibiotics after 8-10 weeks, have you been on an herbal protocol to continue treatment?
Posted 9/13/2016 9:23 PM (GMT 0)
Hi Dale,
Welcome to our community!! I'm glad you found us.

I have the same question as Girlie. LOL!

Also, even though you are not new to Lyme, I would encourage you to take a look at our "New to Lyme?" thread, just to be sure that you are aware of the information listed in that thread.
Posted 9/13/2016 10:17 PM (GMT 0)
HA i beat you all. ~22,000. For those who got your house inspected how much did it cost?
Posted 9/14/2016 11:31 PM (GMT 0)
@psilo, the guy we had test our house did it custom for what we wanted to spend. We got to pick the type of test and the rooms of the house that were tested. He also checked the entire interior/exterior of the house for water damage with infrared, and checked the basement and attic. I don't remember the exact cost... I can't remember what I had for lunch, sadly. It was around $1500 I think.
Posted 1/26/2017 4:41 PM (GMT 0)
I'm going to re-test some of this , would like to bump this post up from last fall. Now
i see it started even earlier, oh well.

I had slightly elevated TGF beta 1 in the past, I find this interesting since its not mentioned much.

Also had elevated C4a that bounces around quite a bit. C3a was normal.

VIP test was normal - so I guess that means it cant be mold. (?)

Never had MSH test, might soon.

Post Edited (astroman) : 1/28/2017 9:54:01 AM (GMT-7)

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