So I recently tested through Quest and my results were:
TGF Beta 1: 2240 [range 344-2400]
C4a: 4325 [range 0-2830]
I believe I have Bart, Babesia, and maybe Lyme as other tests [antibodies, Igenex FISH] indicate. Trying to solve this puzzle still.
I still lack the classic Lyme symptoms. I have no pain, brain symptoms, or fatigue at all. I do have muscle twitches, sleep disturbances, GI problems, numb hands when waking and other more mild symptoms.
I am awaiting C3a results as well.
What do you guys make of these test results in relation to my case and possible culprits? [Lyme, Bart, etc?]
Is my TGF indicative if anything as it's not quite out of range but on the higher end?
Posted by Jordana (Member # 45305) on :
My tgf beta is 18,000 so I wouldn't read it as a high number.
As to what it all means diagnostically, there are lots of theories, but high C4a is likely to be Lyme.
Posted by TerryK (Member # 8552) on :
I would get a detailed explanation from the doctor who ran the tests.
Based on my own experience (I'm not a doctor) it looks like you may have a biotoxin issue.
Consider that you may have exposure to mold or other toxins in addition to toxins created by Lyme disease or perhaps it is Lyme only.
You are on the upper end of normal for tgf beta 1 and that coupled with the higher c4a would make me think I should pursue what this might mean.
Not everyone has the same symptoms from Lyme disease and/or your symptoms may progress.
Both my tgf beta 1 and c4a are elevated and I'm currently being treated due to mold exposure but I also have lyme disease, bart and babs.
Using cholestyramine to bring down c4a and tried lorsartan to bring down tgf beta 1. I could not tolerate lorartan and am looking for other ways to bring it down.
Wow Jordana - what are you doing to bring your tgf beta 1 down? Do you know why yours is so high?
Terry
Posted by TexasBartonella (Member # 47977) on :
Terry, should I add Cholestyramine to my antibiotic and antiprotozoal regimen to see if it helps? Or is that too many things at once?
I dont think I have mold issues. I've traveled many times since being sick, and even moved to a modern apartment building and none of my symptoms have ever changed, even for 1 day. Also no brain or fatigue symptoms at all- this seems very unlikely to be mold?
I am running C3a now. If my C3a is high, in addition to my high C4a, that should rule out mold and rule in infectious pathogens right?
Posted by Jordana (Member # 45305) on :
I've tried a lot of things TerryK but nothing seems to help much. I take cholestyramine, tried losartan, etc. It went from 18,000 to 17,000.
My theory is that it's untreated babesia and it's not going to go down until it's handled.
Posted by TerryK (Member # 8552) on :
Texas, My understanding and experience is that cholestyramine is often given in conjunction with abx therapy and/or mold exposure in order to mop up biotoxins. Cholestyramine often makes lyme patients sick but without taking it some patients with certain genetic issues cannot rid themselves of the toxins.
IF you were exposed to mold at one time you can still be sick from that exposure even though you are no longer being exposed. Lots of hormones and other things get messed up and must be repaired plus some of us are not able to get rid of the mycotoxins very well and thus they continue to cause issues unless we take something to remove them from our bodies (like cholestyramine). I have had the HLA testing and I have trouble with lyme biotoxins, mold toxins and spider bites so I need cholestyramine. The link to the surviving mold site I gave above is helpful in explaining all the issues that can be a problem after exposure.
As far as a high c3a in conjunction with a high c4a ruling out mold and ruling in infectious pathogens - good question - I don't know the answer. According to this both might be elevated in acute lyme disease but c3a would not be elevated in chronic lyme disease, however c4a would be elevated. http://www.ncbi.nlm.nih.gov/pubmed/19140878
If you had acute lyme disease and mold exposure you could possibly have elevated c3a and c4a.
In any case, I would ask my doctor if cholestyramine would help - that is if the doctor is familiar with the treatment related to biotoxins.
Jordana - so sorry to hear losartan did not work for you. As you surmise, ongoing exposure seems likely. I'm still trying to find an alternative to losartan. I have not vetted all the items listed here but this seems like there might be some useful information https://selfhacked.com/2015/07/19/tgf/