What are some out of the box things you did?

[Michel12]

Hi i'm wondering what are some out of the box things or "advanced" things you did to get a diagnosis? I've heard of people talking about 23andme and was wondering if its informative to a doctor and not a scam. I had once gotten a spect scan form the amen clinics and no doctor will even consider it. Any other things I should look into for PANDAs or lyme?

[JAG10]

Hi- we also did a spect scan with Amen clinic in VA. We stayed with that psych for two years trying every med under the sun slowly getting worse and worse. I remember that psych assuring me we weren't missing anything. 6 months later we got a second opinion at CHOP where pandas was suggested in a whisper. That was a turning point for us.

 

Interestingly, Dr. K thought the SPECT scans were very interesting and asked for a copy. But you are correct, most docs shake their heads like you've been swindled. We haven't done the 23 and Me but at least it isn't as expense as spect scans.

[JAG10]

BTW, we recently did a neuroadrenal test through neuroscience and the findings have resulted in us trying GABA which seems to be getting us that last 5% that has been do elusive. Dr O ordered it for us.

[Michel12]

Hi- we also did a spect scan with Amen clinic in VA. We stayed with that psych for two years trying every med under the sun slowly getting worse and worse. I remember that psych assuring me we weren't missing anything. 6 months later we got a second opinion at CHOP where pandas was suggested in a whisper. That was a turning point for us.

 

Interestingly, Dr. K thought the SPECT scans were very interesting and asked for a copy. But you are correct, most docs shake their heads like you've been swindled. We haven't done the 23 and Me but at least it isn't as expense as spect scans.

i had the same problem with medication. none were helping me after trying so many. Unfortunatley this led to them doing ECT which made me even more worse and was one of the worst turning points in my life. I will look into neuroadrenals. Any PAndas tests I should get done? My strep came back negative of course.

[LNN]

Are you looking for tests to support a Pandas dx or tests that can give you ideas on supporting general health and neurotransmitter production/balance, regardless of Pandas?

 

For Pandas, you can do the Moleculera Labs (aka Cunningham) test that looks for auto (self) antibodies against 4 key neuronal receptors and measures your levels of CaM Kinase II (a measure of cytokine response). Docs in the Pandas community give a lot of weight to this test as does the NIMH/Swedo but most docs don't let this test sway them. If they believe in Pandas ahead of time, the test will be interesting to them and may make them more comfortable prescribing abx without high strep titers. But if the doc doesn't believe in Pandas, the test results aren't going to change his/her mind. http://www.moleculera.com/testing/ The test is $925 and I don't know if anyone's had insurance coverage for it. We did it when it was in trial phase and was "only" $400 but out of pocket.

 

You can also do blood tests to measure ASO levels and Anti-DNase B levels (these are antibodies against strep). Both should be covered by insurance, tho many labs are unfamiliar with AntiDNase B and you'll need to watch over their shoulder to make sure they run the right test. But in general, you'll only have a high ASO if you measure 1-3 weeks after a strep infection. AntiDNase B levels rise 3-6 weeks post-infection. So catching that window can be tricky, making a "normal" result inconclusive. Also, some people don't produce high titers. However, a high level would certainly support that you had a recent (or current) infection and help a doctor feel more comfortable prescribing abx or making a dx.

 

If you're looking for other tests that help you rule things in or out or support your overall health, I'm a big fan of 23andMe. It's a legit test - I believe they use Labcorp to run their tests. Is it informative to a doctor? My LLMD found it somewhat helpful, my PCP looked at me like I had two heads. My OBGyn uses a similar test to help patients with infertility issues. But I've ended up becoming my own "expert" and guiding myself. But remember, the human genome was only unraveled 10 yrs ago. Understanding what various mutations mean and how to work around them with supplements or diet or medications is in its infancy. It's too new for most docs to understand or feel comfortable treating. But that doesn't make it illegitimate. People with ulcers 50 yrs ago still had h. pylori, not stress, as the cause. The fact that a dr. didn't recognize that doesn't make it less true. But there are privacy issues with doing any genetic test with any co., so you need to make your own decision on this one.

 

We've also done stool tests with metametrix and nutritional blood work with Spectracell that I found helpful. the stool test found yeast, told us what strain and what would be effective to treat it. The Spectracell told us about a few vitamin and mineral deficiencies.

 

For lyme, there's no great test. The best you can do is probably Igenex. Under the pinned threads at the top of the forum, you'll see some threads for lyme. In there are some discussions of tests and what bands mean. The reason Igenex is preferred is that in 1990, they came out with a lyme vaccine that targeted bands 31 and 34 (I think - my memory is fuzzy on details). That's because these bands are unique to lyme, not produced by other bacteria. But...anyone vaccinated would test positive if the labs used these bands for screening. So most labs do not test these bands, even tho they're among the most definitive. The vaccine was a complete failure and was pulled from the market after only 18 months. It made people who were genetically susceptible (having certain HLA-DR gene mutations) very, very disabled. But the CDC never changed their testing guidelines to add these bands back. So doing a lyme test thru labcorp won't test for these bands. Igenex is one of the few labs that does look for these bands. That said, if you've been sick for a long time, your body can stop making antibodies to lyme. So you can have it but still get a negative result. Lots of controversy. But if you're going to test for lyme, I'd suggest Igenex or Advanced Labs, which doesn't test antibodies but rather tries to culture lyme spirochettes from your blood sample. However, even this test has its shortcomings. Lyme is no easy path, for sure.

[3bmom]

Our Dr. uses the neuro spect scan to visually see areas of limited blood flow in frontal lobes and then to check improvement after infections and allergies have been addressed. It shows science based evidence. Don't understand why its not broadly accepted. Unfortunately the soft ware malfunctioned for my sons test. I think it would be very interesting.

[Guest]

I watched a bunch of videos from duke about myalgic encephalitis - that is something that needs to be checked if you're presenting the symptoms and it has to be done through spinal fluid. A lot of doctors don't know what to look for.

 

They also mentioned "neuro-psychiatric" lupus in the videos. After reviewing my labs, I realized I've never even been properly assessed for lupus myself. Had no idea it was super complex and took advance labs to really get to the bottom of it. There is also "CNS" lupus which can cause things like dysautonomia, etc.

 

So yea, I'm trying to find a doctor who can do the labs advanced enough to check for this stuff. Most doctors have never heard of it. Way back in 09 when I ended up bed-bound I trusted my GP when he said I didn't have lupus, but he ran basic basic blood work and came to his own conclusion. Even mayo clinic has a lengthy list of labs for SLE.

 

You have a great doctor though. I have a friend who is a patient of Dr. R and he is one of the best neurologist + dysautonomic specialists in the states. Does he have any ideas of where you should look next? I've talked to him before and get the vibe that's he super helpful and caring, I'd follow his lead for sure unless you guys have run into a dead end. With my friend they are looking into stiff person syndrome.