Lyme question - how to test your progress

[LNN]

DS10 is 2.5 yrs into lyme treatment. The first yr, we made steady progress - saw herxing and rotated abx and went up and down the way you'd expect. We did cyst busting which was really traumatic. When we stopped, life was good but then we stalled. Then ruled out mold and found pyroluria. That jump started progress in a big way and we did 9 more months of combo abx and saw more gains with much less herxing. So last May (18 mos of treatment) we weaned off abx and DS was abx-free all summer.

 

He did ok for the first month, then second month he got more irritable and the third month, some OCD and body pain returned. So he went back on zith + rifampin last Sept and he climbed back up to 90%, then 95%. He enjoyed most of the school year between 90-99% and has had an awesome year of healing and making up for lost time academically. He survived the flu at Xmas without any OCD or Pans symptoms. In January, I did two weekends of tindamax but DS got very angry and he lost some friends for awhile. So I stopped. No herxing per se, just angry. So I stopped. At our last LLMD visit in Feb I was thinking we were in the homestretch (which of course you know is just begging the universe to knock you down a notch).

 

At the end of Feb, OCD crept back in. No illness, no swollen glands or congestion. Nothing unusual healthwise. Happliy, no brain fog, which in the past has always accompanied backslides (perhaps b/c in Dec I added phosphatidylserine). It's been mild, subclinical, "feels right" stuff. No one notices except me and DH. Hovers between a 2-3 on a scale of 10. But it isn't going away (6 weeks now). LLMD added augmentin at my request b/c in the past, adding augmentin has returned things to baseline. This time, it did nothing.

 

I just got DS's 23andMe results back and I stopped a few supplements that were "bad" for his mutations - still no change. I've added a low dose of a B complex which is supposed to help with some overmethylation issues. Not much change - a little mellower but no change in OCD. We see the LLMD in 2 weeks and I'm not sure which avenue to pursue. Do we stop abx and see where we're at? Is this a methylation thing? How do you know if lyme is still the issue or something else? What labs can be run? No point looking for lyme antibodies. Maybe a C3d? Not sure the C3a/C4a is still a valid measure since Quest doesn't use Jewish Labs anymore, Not sure LLMD puts a lot of faith in CD57 results for kids.

 

Guess I'm looking for a way to see if lyme is still part of the problem or if it's more of a "biological" problem like methylation or imbalance. He feels "off" and has OCD. But the other stuff that always came with lyme flares is gone. I'm tired of the merry-go-round and don't have tons of money to run every test under the sun (5 yrs of Pans crap leaves you pretty broke). He's always been able to handle viruses "normally" - they aren't a Pans trigger for him. Looking for targeted ideas....

[Christianmom]

My son just had the C3a/C4a tests run a couple of days ago and these are the Quest tests that I asked the hospital to order:

 

http://www.questdiagnostics.com/testcenter/BUOrderInfo.action?tc=52642&labCode=QBA

http://www.questdiagnostics.com/testcenter/BUOrderInfo.action?tc=42658&labCode=QBA

 

I told them it was important that these exact tests were ordered so it would go through Jewish Health. I haven't gotten the results back yet, so I don't know if they actually did order the right tests.

 

If you have trouble getting these Quest tests run, you can have the hospital send your son's blood directly to Jewish Health. I believe the tests are pretty inexpensive ($60?).

 

Also, maybe try running the TGF-b1 since insurance will cover it?

[sf_mom]

You could also test VEGA numbers if you haven't already to see if they are normal or elevated (this should be covered by insurance). If elevated it indicates Bartonella is still there. If normal and there are symptoms (OCD) it can indicate Babesia. See Dr. Schaller's 2009 update to Babesia Treatment explains VEGA in detail.

[smartyjones]

parasites? could be worth a conversation with LLMD about. often go with TBI.

 

toxoplasma gondii is one that can be a big problem.

[SSS]

Some thoughts:

You could look at gut health. The metamatrix stool test will tell you yeast, bad bacteria's, gluten sensitivity, how well food is being absorbed, and how well probiotics are keeping the gut lined despite antibiotics.

It also tests for parasites.

$499. though, expensive.

 

I think doing a C4a will just tell you if there is still inflammation, but it won't tell you from what: Lyme? Mold? Gluten?

 

The Vega test- I had it done 1/2 way through my own treatment, it was normal, but I didn't feel I was done with Bartonella- but, I didn't have OCD- or Babesia.

 

Another thought: Stop the antibiotics. He is just now on the Augmentin, right? And you say it hasn't made a difference this time?

Do you think he could live with the OCD being a 2-3 out of 10?

He has come such a long way: doing well in school, friends, no physical pains anymore-

I know he has also done CBT- do you think he could use these tools to deal with the 'not right' feelings?

Edited March 30, 2013 by S & S

[LNN]

No augmentin. He's been on zith+rifampin since sept. Then we added augmentin for 3 weeks in Feb/Mar and that made no change (had helped several times in the past). Now back to just zith+rifampin.

 

We are doing CBT except he often just finds it easier to give in. It's not distressing enough for him to want to do the work. Could he live with it? Yes, he's living with it now and only mildly concerned about friends noticing. But that's not acceptable to me - because I know this beast. Give it an inch and soon it's demanding a mile, then more. Besides, it's always been caused by something. Which means I'm still missing something. And you know me. I'll tie myself in knots trying to get to the bottom of it.

[lfran]

Have you looked into his h. Pylori status? Ds 11 was very high for that.

[cobbiemommy]

Yeast? On the plus side, I am glad you have gotten this far. It still gives all of us hope!

Edited April 1, 2013 by cobbiemommy

[tpotter]

Have you considered getting evaluated by an ART practitioner? I don't know what you are spending on all the tests that you're doing, and I know that money is tight, but would it pay to get tested to see where you stand? From what we've found, ART has told us that my younger son, for instance, was dealing with strep in the kidney, some bartonella, mold, and several other things. I wasn't expecting some of the answers she came up with, but they made sense and are responding step by step to tx. Just an idea.

[LNN]

Christianmom - Thanks for the lab links! Unfortunately, they can't be found when I type in our state (CT). So not sure I'll be able to get them done here, but I'll talk to the LLMD.

 

SFMom/Smarty/lfran - no symptoms of any sort of infection. I know parasites can be stealthy but there's nothing aside from OCD. No erratic behavior, no physical symptoms, no gut distress or cravings (other than a 10yo boy who's always hungry). But I'll run these ideas by the LLMD.

 

Cobbie - yes, yeast popped into my mind this weekend. You know - just after I handed him a basket with 20 pounds of processed sugar! (kidding about the 20 lbs). Will definitely ask about a candida antibody blood test.

 

I'm also going to stop Vitamin D supplements tho I'm doubtful that's the problem - he's been on D for over a year without issue. But just to rule out...I may also break out the motrin or enhansa to see if that helps - tho it's always helped more with the mood/impulsivity piece and not the OCD piece.

 

TPotter - my LLMD is an ART practitioner but it's not a diagnostic tool I can embrace. I know some swear by it and I mean no disrespect to those who are guided by it. But it's never been something I could wrap my brain around. Tho my LLMD has offered in the past, it's something we agree to disagree on. We're not spending any money on any tests at the moment (aside for 23andMe and regular CBC panel to keep an eye on liver and general health). The being broke part comes from a half decade of medical treatments/tests, not from any recent tests. I just want to avoid going on an expensive scavenger hunt and know that the moms here often have great ideas.

 

Thank you all for your thoughts. Gives me a good starting list for next week.

[Hopeny]

SFMom what is VEGA? We did VEGF for Bart (was normal) but I had not heard of VEGA

You could also test VEGA numbers if you haven't already to see if they are normal or elevated (this should be covered by insurance). If elevated it indicates Bartonella is still there. If normal and there are symptoms (OCD) it can indicate Babesia. See Dr. Schaller's 2009 update to Babesia Treatment explains VEGA in detail.

[sf_mom]

Just wanted to encourage you to keep digging (I know you will).

 

If you read Better Health Guy's website in detail he does talk about his symptoms and one of them being OCD that is now resolved. Our LLMD described Lyme treatment like the game of "Whack a Mole". You pound down one infection and another one surfaces... hence an increase in symptoms. We now make a rotation in antibiotics when we see mood liability creep back up for more than two week with older DS.

 

As for comprehensive stool analysis, a decent portion was covered by our insurance once we submitted independently making the cost more acceptable. I am worried it might be a yeast or 'fungus' not picked up via blood. Yeast was such a huge impact to our overall symptoms and again thought we had it covered with regular dose of nystatin. We did not have a single symptom except emotional stuff of mood liability and AD/HD. This side benefit of comprehensive stool, is a good understanding where your child stands with good bacteria, digestive enzymes and of course other opportunistic bacteria. Our experience with enzymes has made such a "huge" difference for younger DD. Like magic, similar to what you probably experienced with KPU treatment for your older DS. The book "Enzymes for Autism and Other Neurological Disorders" why they are so effective and the amazing results they have seen in Autism community. If the testing is not a option maybe a trail of specific enzymes might help. Book is $14.99 and guides you through types.

 

http://www.amazon.com/Enzymes-Neurological-Conditions-Updated-Edition/dp/0972591850

[sf_mom]

Hopeny: I am not sure what it is testing but I do know how to interpret results. If normal and there are symptoms Schaller believes Babesia is most likely in the mix of co-infections. Some friends have used the test for guidance with treatment. Dr. Schaller explains the VEGA in detail in his 2009 Update to Babesia. Honestly, had to read it several times as its a lot of information to take in.

 

I can't remember if your child is suspected of Babesia or not? What is your LLMD saying about Babesia? The best description that fit our symptoms of Babesia is attached. Our older son lacked positive results but had one symptom and that was temp intolerance early evening. He always needed to pull his covers off before bed even in winter. Dr. Anderson also has some good information on Fungus on his website.

 

http://www.wayneanderson.com/pages/diseases/babesia

[LNN]

Wendy, thanks for the encouragement. Yes, you can bet I'll keep digging. Part of my nature. I read thru your link and thru other babesia lists - none of it hits home. I've been feeling like we're done with the lyme stuff - or at least to a point where it's at a low enough threshold where life has almost felt normal for months at a time. I suppose I should stay open minded about poop but at almost 11, DS is far less cooperative than he used to be and really doesn't want his nutty mother shoving a pan under his butt before he uses the bathroom. But you give me something to mull over for the next week.

 

We're just so close to the finish line. His brain is sharper than it's been since he was a toddler. He is indistinguishable from his classmates and even in better shape than some. We got an email last week from a teacher - one that wasn't meant for us but instead was meant for parents of one of my son's friends (our email name autofilled and she hit send w/o catching the error). This friend struggles with ADHD and the teacher was updating the parents on some issues. I was like "wow - how cool is that - it's not my son she's talking about!". (yes, I know it's bad form to revel in others' problems but sometimes, you just jump for joy anyway). I haven't even emailed the teachers about this bout of OCD because they won't see it and things are so normal, I'd sound like a hypochondriac. DS really looks very, very typical - which is light years from where we started.

 

So I can't seem to find room in my brain to think we're sliding backward in our lyme war. Yes, there's films and a strengthening immune system that could be going deeper at finding infection. But lately, my journey has been about less is more. I've found nice improvements from taking away supplements that are no longer (or never were) needed. The kids are gleeful that that "only" have to take 2-4 pills at breakfast or bedtime right now - it's time to shed some layers. I'm starting to feel like abx may be part of the problem rather than the solution at this moment - something I never thought I'd say.

 

So maybe poopology 101 is in order along with a discussion about yeast. I appreciate all your support and ideas.

[sf_mom]

Boy, can I relate... we are having many normal days with older DS and no PANS symptoms. THE TICS TOOK FOREVER TO RESOLVE but now gone (knock on wood). He is "a typical" to all his friends (his best friend TICs horribly), he is meeting all school requirements and finally keeping pace athletically. We are just getting over a bout of the flu with all three kids over spring break and we had no increase in symptoms. Treating the yeast/fungus aggressively really got us there. If you read Dr. Wayne Anderson's statements about fungus (link above), I find it interesting how he looks at it as primary infection or secondary infection to Lyme depending genetic disposition to detoxify. I believe he is referencing more the terrain of the body and not your environmental exposures to mold. Our other LLMD who does ART says he typically finds yeast to be a problem at the tail end of Lyme treatment. Anyway, something to think about.

 

We are continuing treatment for older DS for two reasons. Heavy metals and biofilm results. We know we have a problem with both. We have not started chelation yet and will perhaps hold off until summer. I honestly believe in our situation they go hand in hand - biofilms/metals . Our hope is to stripe out heavy metals weakening the biofilms. Once those metals dump I will feel confident we can take him down and off antibiotics.

 

As you know, it doesn't hurt to stop antibiotics. I think you will know if there is a regression occurring over the next several months and then perhaps reconsider some of the above testing if he worsens. To some degree antibiotics are immune suppressing and if there is anything left in terms of infection would be nice to see if he could fight it on his own.

Edited April 1, 2013 by SF Mom