fightingmom

Vitamin D was either 17 or 11...I am having a very hard time keeping that number straight. I think it was 17 though and that was pretty low. I started supplementing the night we came home. Our next appt is for allergy testing and is in 5-6 weeks, but the more I think about it, it seems stupid to keep going with that. "Allergies" are not our issue - not true allergies.

Look into that, I was recently informed that with docs that specialize in thyroid disorders, they actually like the TSH around the 2 range so 5.5 seems high. Did that not get mentioned at your appt? It was yesterday right? Who did you see? The fatigue has been beating me down since my surgery (and aching like i have the flu)...and I have to wonder if the 3 weeks of steroids I was on a few weeks prior to surgery added fuel to the fire and I'm paying for it now...

Yes, I tested positive for band 34 and surprisingly even Dr. B told me to see an LLMD. Said they don't see that one show up often and if they do it's often indicative of a late stage infection. Have other things too that indicate lyme in labs...so... YES! More questions than answers for sure. I have been trying to search about the IVIG antibodies, but haven't seen a timeline on that yet.

Oh sorry, I'm confusing myself with who is seeing who. B12 was in normal range, but I have read that this is pretty much useless, because it just measures cobalamin in blood, but doesn't mean anything when it comes to methylation pathways. However, our homocycsteine was on the low end. The range runs from 5-15 I think it was and my son's labs were 5. This is on par with my suspicion of high histamine and undermethylation, so I feel like I'm piecing things together. Also, saw improvement with zinc and that coincides, too. Don't want to hijack this thread, just thought since Bulldog saw Dr. B. recently too (and I thought you did, sorry) it may be on their labs, too. Just curious.

Did either of you have homocysteine and B12 levels on your labs with Dr. B? Curious about those.

Well, I suck at antibody stuff, but I too tested positive myco > 5.0 and was told no big deal...but I'm here to tell you I have felt like death for a month. A trip to the grocery store and I'm completely wiped out. Walking up and down the stairs and I'm tired. I am freaking exhausted ALL THE TIME. To me, that doesn't scream no big deal...just saying.

I hope she is feeling better now! These poor kids!! Question...I thought I read somewhere about a rash with little red dots, I have had that on my stomach for a long time. Sometimes they are much more obvious, other times they fade. Right now it's VERY bright red and a few more dots are showing up. Am I crazy, or is this somehow related to coinfections? Look like red freckles.

This from the CDC site: http://www.cdc.gov/osels/ph_surveillance/nndss/casedef/babesiosis_current.htm

I think I'm going to have ours rerun through labcorp, too. What came up for you guys on bartonella and that other one that starts with an "a"? Not buying that "everyone tests positive" thing...we all obviously have different results...

Stole this from Igenex website: Seems like if you show titers at all, it's likely that is an indication at some point you had infection (otherwise it would just come up as negative I believe) because you can't have antibodies without the exposure. The lower they are, the older the infection may be? The higher they are, the more recent or a reactivated infection. I suppose if your immune sytem super sucks, the titers may not show up at all, but if they do, this is what I'm getting out of my reading.

Bulldog, let me know if you want me to grab our labs and post exactly what they say, so you can compare.

I have been wondering the SAME thing about the labs for coinfections. I found the results hard to interpret. Bartonella came back as "negative no titers found" or something along those lines, but we both had two others that came back as saying no evidence of "acute infection" or something like that and titers of 1:20 and 1:64. Is that what yours says?

I need to get on the ball with this titer stuff. It's the one thing I really can't wrap my head around. My son did not show any ASO, but has DNase of 273 (off the top of my head, maybe I'm off a little). Does that indicate he does or recently did have strep? Sure would account for his behaviors the past few months!

done!

WOW. So cool!!! SO...the enzymes keep the virus hiding. Perhaps there is an enzyme involved in 'surpressing' Lyme or prohibiting it from rearing it's ugly head in labs? Who wants to set up their basement into a science lab, like Alan MacDonald? Me, me, me! Man, I love this stuff. I'm currently wrapping up my nursing school pre-reqs...if I was younger, I totally would go back for microbiology. Yesterday, we did blood smears in class and I was totally hoping to see a spirochete. I'm sick, I know.

Singulair was one of the first meds that I noticed really impacted my son. Way back in the day when he was 4-6 dealing with really bad sinus/ear infections, etc. (prior to adenoids being removed) we were prescribed singulair (both of us, I have similar issues) and it threw him into an irritable tirade of temper tantrums. Looking back...I wish I knew how signficant all of these things were. I felt it made me pretty crazy. Irritable and anxious - just not myself and stopped taking it myself before I made it through one bottle.

Found this explanation helpful for me. It's from a fertility forum, I believe, but the concepts were the same. Taken from: http://www.fertilethoughts.com/forums/immune-issues/710721-immunology-dr-beers-testing-ivig-explained-fish-oil-info.html

I was reading up on lyme and found some references that basically seemed to say that if you had been infected for a very long time the body may no longer show antibodies, or they may not show. I would assume that at a certain point the body stops recognizing certain viruses/bacteria/fungi, etc. as being foreign if they have been living there for exceptionally long periods of time. At the end of the day though, it all boils back to autoimmune deficiency, disorder, etc. It seems none of us would be here if these kids had immune systems that were working properly. It's been referenced many times that a lack of elevated titers does not mean that you are not dealing with PANDAS, so it seems that the experts are suggesting that you can be infected or exposed to strep and other offenders, but not show the immune response via antibodies/titers.

I read something associating mitochondrial issues with long term abx. Here is a link I just found on a google search that is actually from this forum, maybe it will help: http://www.latitudes.org/forums/index.php?showtopic=6866

Sorry, I couldn't be of any help. I tried several times to find something yesterday and all I came up with is that IFN is interferon gamma and the production increases in response to viruses, bacteria, microbes, etc. -- so if candida is high, it could be in response to that, and maybe other infections. IFN kind of sends or turns on cells to fight an infection. I could have sworn I just saw that IL-6 was related to the gut. I remembered it, because I had looked up IL-6 as I was watching the seminar to see what it was, could have sworn it was during the bit on leaky gut. Sorry. Feel like there was a link to strep with it, too but I obviously don't remember. LOL TLR I believe stands for toll-like receptor. I'm remembering that from class, but I don't have a clue what that means in your situation.

I don't think I can possibly top Nancy's advice, but just wanted you to know that you are not alone. It's SO hard and some moments you just want to give up...but then you pick back up again and keep on keepin' on. It's all we can do. Hang in there.

yes, i've been noticing vit k keeps coming up..trying to get more in kids..there is one chewable for younger ds that list vit k on label....natures plus gold. has xylitol, k2, d3 ans some probiotics in it. Yep, seeing a lot of vitamin k coming up myself. My son is pretty deficient in vitamin d, which I know a lot of people are especially in the north east, but his number was 11 or 17, I'd have to look again. Either way, pretty low. SO....low, long winded way of getting to my point which is that it's pretty cool you found a vitamin with both. I'll look into that next. I went out in a hurry and picked up d3 already. I think I'm going to make it a regular thing for all of us, so it should go quickly.

I just watched a yasko lecture and she mentioned all of these things. If I remember correctly (I'm out an about now) all of those things indicate markers in the gut. Symptoms and indications of leaky gut? Seems to make sense IF you are battling consistent yeast issues, which it seems you are or maybe did at one time? I don't know exactly what IFN-g means. Maybe old yeast issue? Someone more knowledgeable will be along soon, but I think that maybe what it means.

So, I am watching a lecture by Amy Yasko. She started discussing the viruses involved in the MMR vaccine. My son and I do not have antibodies to this vaccine, even though we've both had it multiple times. Remember how we were just discussing how some chronic lyme patients, or those that have had strep for a long time may not show antibodies any more? Maybe the body just accepts it there and stops building antibodies to it? Maybe the viruses or bacteria mimic other cells and hide there? Who knows, but it's not uncommon for this to happen. So, I have wondered in my head if maybe, since the MMR vaccine is made with live viruses...maybe these viruses are still active in us and wreaking havoc? Who knows...but I have wondered. With that said, she starts talking about how Measles may affect the gut, Mumps may affect hormones the and Rubella may affect the pancreas. If this is accurate, measles and mumps are retroviruses and can insert into the DNA, and rubella isn't, BUT can behave like one IF it's together with measles and mumps. If Rubella impacts the pancreas (which they are inferring that is does) it can cause a decrease in gaba, secretin, vitamin k and gastrin.Furthermore, a decrease in vitamin k can cause an increase in HISTAMINE and a decrease in gastrin can cause an INCREASE IN STOMACH ACID. I just thought that was very interesting association...

Some type of infection in the gut maybe?