TGF Beta-1 Sky High Again

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WalkingbyFaith
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   Posted 2/27/2018 4:16 PM (GMT -6)   
At baseline when I found out I had mold illness, my TGF Beta-1 was over 27,000. Three months after getting out of the moldy environment, it was normal at 1,481.

I just got my last lab results back and it is sky high again at over 15,000. I'm still in the same house I moved to when my labs were normal, so I don't think it's from mold.

Has anyone else had this lab marker normalize only to shoot way up again? What was the cause?

Can Lyme, MARCONS, or possibly coinfections cause TGFB-1 to be high?

I was not expecting this. I feel discouraged and confused.

k07
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   Posted 2/27/2018 4:23 PM (GMT -6)   
Mine is a lot lower (around 5,000) and went up just a tad on last lab but my mmp-9 went way down. Being that lyme is a biotoxin I think it can increase it. Are you doing anything new from when it was normal? Also, the link below has some things that can increase it. Maybe browse through and see if anything rings true.

/www.selfhacked.com/blog/tgf/

k07
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   Posted 2/27/2018 4:31 PM (GMT -6)   
One more thing - I don’t believe MARCoNS increases tgf beta. At least I did not have that experience. In fact, if I’m now clear (find out this week) then my value increased after treatment.

Are you feeling worse?

WalkingbyFaith
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   Posted 2/27/2018 5:18 PM (GMT -6)   
k07 said...
One more thing - I don’t believe MARCoNS increases tgf beta. At least I did not have that experience. In fact, if I’m now clear (find out this week) then my value increased after treatment.

Are you feeling worse?


Yes. I am feeling worse. Pain is my worst and most constant symptom. I've also been weaker and more tired. I thought it was just a really long herx or flare triggered by taking Augmentin for 7 days back in December. Not that I was feeling good before that, though.

A year ago when my TGFB-1 came down to normal, I felt horrible. I had no improvement in symptoms to correlate to the normalization of the lab markers. The doctor explained that the labs normalized due to getting out of the moldy environment and were not indicative of getting the mycotoxins out of my body. That's what is so confusing and concerning to me now.

I expected it might be slightly elevated due to normal exposures from going in stores and such, but definitely not that kind of elevated. This just leaves me baffled. Logically, it doesn't appear mold would be the cause in this case, although I have no way to prove it isn't. But if it's not from current mold exposure, then what is it from?

BTW, I had MSH tested, too. At baseline it was 19. A year ago it was <8. Now it's up a little at 13. At least it's moving in the right direction.

I really wish Shoemaker had dug deeper and compiled data on coinfections. He all but ignores those or lumps them in with Lyme, but I have a feeling a few of the coinfections could have some anomalies that would be good to identify with lab data if someone would make the effort. I'm not even sure if his genomics testing will help make any distinctions among the infectious agents. We really need that.

k07
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   Posted 2/27/2018 9:23 PM (GMT -6)   
So it looks like I was wrong - nasal staph can increase tgf beta according to Shoemaker (buried in these notes)
www.betterhealthguy.com/biotoxin-illness-conference-2011

A low msh can cause chronic pain.

I don’t seem to fit the perfect mold picture either. All very confusing. However, in the last 3 years, I had the most significant change taking desmopressin for low adh. My urination pretty much normalized! No going at night even weeks after I stopped desmopressin. It was like a reset. Then last week I did a urine culture that showed a uti. I was having no symptoms! They told me to take bactrim so I did and immediately after first pill I started urinating more. Now up 3-4 times at night. So abx just undid my progress. Not sure why but I’d love to figure it out.

WalkingbyFaith
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   Posted 2/27/2018 10:59 PM (GMT -6)   
k07 said...
So it looks like I was wrong - nasal staph can increase tgf beta according to Shoemaker (buried in these notes)
www.betterhealthguy.com/biotoxin-illness-conference-2011

A low msh can cause chronic pain.

I don’t seem to fit the perfect mold picture either. All very confusing. However, in the last 3 years, I had the most significant change taking desmopressin for low adh. My urination pretty much normalized! No going at night even weeks after I stopped desmopressin. It was like a reset. Then last week I did a urine culture that showed a uti. I was having no symptoms! They told me to take bactrim so I did and immediately after first pill I started urinating more. Now up 3-4 times at night. So abx just undid my progress. Not sure why but I’d love to figure it out.


So sorry. Can you take desmopressin again and see if it works like it did before?

I don't understand why taking short time abx messes me up so bad and for so long. It's scary, and I have no satisfactory explanation from doctors as to why this happened. It's happened to me twice now. A year ago with 7 days of minocycline and this time with 7 days of Augmentin. I'd taken Augmentin, amoxycillin, Zpak numerous times over the years for sinus infections and they never did anything bad before, even for years after my chronic symptoms started. There's just so much I don't understand. It worries me and makes me think I'm incurable. I have the 4-3-53 HLA type, too. That's like a curse.

k07
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   Posted 2/28/2018 8:21 AM (GMT -6)   
I feel somewhat similar - I cannot take abx anymore. It does not feel like a herx should and I guess this is proof that is messing with adh. Are you following the Shoemaker protocol now? I’m really hoping VIP will fix things. I have to believe I’m on the right path. I don’t necessarily know for sure if the cause was mold though. Shoemaker keeps expanding his list of things that can cause CIRS.

Did you test adh or vip? I can’t recall. I think next I’m doing losartan to get tgf beta down. You may want to retest marcons. When they tested did they numb you and go in all the way? I think it’s like 4 inches. I have turbinites or something in there that they have to maneuver over. The nurse tried 3 times and it burned bad and my nose started to bleed. The doctor is the only one who can do it successfully on me.

WalkingbyFaith
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Date Joined Aug 2017
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   Posted 2/28/2018 12:10 PM (GMT -6)   
k07 said...
I feel somewhat similar - I cannot take abx anymore. It does not feel like a herx should and I guess this is proof that is messing with adh. Are you following the Shoemaker protocol now? I’m really hoping VIP will fix things. I have to believe I’m on the right path. I don’t necessarily know for sure if the cause was mold though. Shoemaker keeps expanding his list of things that can cause CIRS.

Did you test adh or vip? I can’t recall. I think next I’m doing losartan to get tgf beta down. You may want to retest marcons. When they tested did they numb you and go in all the way? I think it’s like 4 inches. I have turbinites or something in there that they have to maneuver over. The nurse tried 3 times and it burned bad and my nose started to bleed. The doctor is the only one who can do it successfully on me.


I'm not doing the Shoemaker protocol. The doctor I initially saw, who diagnosed me with CIRS, used a modified Shoemaker protocol. She initially put me on liposomal glutathione and EPA/DHA for 30 days. Then she put me on cholestyramine. She told me to start with 1/4 dose one time a day and slowly work up. I worked up too much too fast and got horribly worse. I thought I was going to die. She finally told me to stop after 11 days. What followed was about 5 more months of spinning in circles with this doctor and getting nowhere except a positive DNA Connexions test for borrelia and ehrlichia, which I felt was the key for me and the initial cause of my illness and chronic symptoms. I felt the mold was secondary.

I did test adh and VIP when initially diagnosed with CIRS. My VIP was 31.8 but MSH was low at 19 and dropped much lower later. I just looked at those labs and ADH was <.8. Osmololity was in the lab normal range at 279. I don't remember the doctor addressing that specifically. She just kept talking like, oh you just take some cholestyramine and la-te-da, everything will be normal again. She was overly positive and optimistic. Maybe she just didn't want to scare me, but I knew I was in for a much harder picture than she was painting.

As for the MARCONS test, I don't remember it hurting any worse than the ENT. I've been poked and jabbed by ENT's since infancy, so I was accustomed to all that. However, the Lyme doctor I consulted with most recently questioned my negative MARCONS result and said they may not have gone deep enough. I may test again, but if it's positive then I'll be faced with dilemma of whether or not to take the drugs to treat it. I'm afraid of the drugs and not 100% sure if it needs to be specifically treated. It's such a tough call with all this stuff. I just seem to be so sensitive to everything.

I really hope the VIP will help you. From what I gather, some swear by it while others have not been helped so much or relapsed after going off it. You absolutely have to be clear of current mold exposure to be successful with it. Do you have one of the multi susceptible genes?

WalkingbyFaith
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Date Joined Aug 2017
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   Posted 2/28/2018 12:36 PM (GMT -6)   
k07,

I almost forgot. You mentioned Shoemaker keeps expanding his list of things that can cause CIRS. Is there something new that he's recently added? I was diagnosed in Sep 2016. I get emails from survivingmold, but I don't remember any mention of newly identified pathogens.

I know from his FAQ's or other interviews that he only considers biological organisms KNOWN to produce toxins. His answer to one question was that he did not know of toxins produced by mycoplasma or chlamydia pneumonia. (According to Neil Nathan in his into to Buhner's Healing Lyme book 2nd edition, chlamydia pneumonia produces the porphyria toxin.) Shoemaker also stated in his FAQs that there is "no room for 'clinical diagnosis' of co-infections". Shoemaker is a die-hard data guy. IMO, that is both his strength and his weakness. He is not supportive of "unproven" alternative treatments. He asks, "where's the data."

I'm impressed with his work and want to hear what he has to say, but because I don't fit perfectly into his neat little data boxes, I have to look for alternative means of getting better. At least for now. I hope and pray the herbs will at least get me up to par enough that I can tolerate other treatments at some point or alter my dysfunctional immune responses.

k07
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Date Joined Sep 2015
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   Posted 2/28/2018 12:42 PM (GMT -6)   
I think the latest is shoemaker says edta & silver spray for marcons. So that should be better.

Your adh is low. Do you urinate a lot or feel dehydrated?

I am not mold susceptible, but lyme gene 15-6-51.

WalkingbyFaith
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Date Joined Aug 2017
Total Posts : 2047
   Posted 2/28/2018 12:56 PM (GMT -6)   
k07 said...
I think the latest is shoemaker says edta & silver spray for marcons. So that should be better.

Your adh is low. Do you urinate a lot or feel dehydrated?

I am not mold susceptible, but lyme gene 15-6-51.


Thanks! That's good news he's finally looked at non-pharma options.

I'm 100% convinced I've had bartonella since birth or early childhood, and I know bartonella messes with the bladder, so I'm sure that's part of my issues. My chronic symptoms started in 2009. For years (decades) until 2009, I had to urinate frequently and always felt like I had to go all the time even when I couldn't do much. I also rarely ever drank water and typically only drank with meals.

After I got sick in 2009, all that changed. I felt thirsty all the time and drank massive amounts of water. I frequently had a salty taste in my mouth and on my tongue. I would go for hours without urinating and wouldn't feel the urge to go until I was about to bust. At some point in the last 3-4 years, the excessive thirst got more normalized and I only rarely have the salty taste now. My bladder function seems more normal, too. I still go during the night, usually just one time now. Sometimes not until around 6 or 7 in the morning, which is pretty good.
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