What blood tests are the first you'd try?

[Wombat140]

Update January 2016: Digging up this thread again to ask if anyone else has anything to advise? I'm possibly having another blood test done on Wednesday (February 3rd), this time through a private lab who could do some of the tests that my family doctor couldn't order last time, perhaps including some immune/infection-related ones, so I need as much idea as I can of what to ask for. I'm pretty sure we can't afford to do all the tests that Mayzoo's doctor ordered, so I really need some idea of which ones are considered the priorities, if any of you have any idea!

 

 

So, in a nutshell, I have really severe OCD, developed it pretty much overnight at age 13 and had it pretty much ever since (I'm now 25). We've tried various things without success including Augmentin and tinidazole and any number of vitamin supplements. We're now trying doing supplements systematically based on a 23andMe gene test, but the results aren't making any sense.

 

I've never been able to have a blood test done, despite many attempts, due to a needle phobia. I'm so bemused and desperate now that I'm thinking of trying again, though I haven't any particular reason to think I'll succeed. But I'd presumably need to sort out what it was supposed to be being analysed for, and who was going to do that, BEFORE having the sample taken.

 

Please can you tell me what would be the first things you'd try and get the blood tested for if I do succeed in having any taken - whether with regard to the vitamin/methylation question, or just generally? It may be difficult to arrange any obscure tests, because unfortunately the PANDAS doctor I saw a few years ago is no longer practising and doesn't know anyone else who is - I'm in the UK. But it's worth a try.

 

Any suggestions much appreciated.

Wombat140

Edited January 29, 2016 by Wombat140

[MomWithOCDSon]

Full immune panel (IgG, IgA, etc.), ASO (strep), anti dnase B (longer-term strep titer). I think methylation issues are a VERY worthwhile trail of exploration for someone your age dealing with these issues, and it appears from your signature line that you done that. So none of the interventions you're trying for the mutations has been effective?

 

Wombat, I don't want to discourage you from exploring every available avenue, but as the mom of a now 18-year-old who was first diagnosed with OCD at age 6, didn't get a PANDAS diagnosis until age 12, responded very well to abx (brought him back from a totally dysfunctional brink), but continues to deal with some ongoing OCD and anxiety issues (though manageable) . . .

 

I just want to encourage you to perhaps not get hung up on the testing and interventions tied to traditional PANDAS/PANs (rapid onset, pre-pubescent expression, abx, IVIG, etc.) and perhaps lean toward more "lifestyle" type interventions that will hopefully help make life more functional, more fun, and help you push away more of the OCD that interferes with your everyday life. If you do yet have underlying infection, be it lyme or strep, etc., then abx, IVIG, etc. will likely help you to an extent. (How long were the course of abx you've tried in the past? Can you get a longer-term prescription for them and journal your behavior patterns for a period of months? We found that, after the initial "burst" of palpable benefits, abx tended to yield more subtle improvements over time . . . perhaps unnoticeable to a majority of people, but by reading back through our journaling of things our DS used to do but didn't need to do anymore, or things he'd given up to the King OCD but had begun to resume as he improved).

 

But just from our experience, having contended with OCD for as many years as you have, I would not want to lead you to believe that abx or IVIG will be a panacea -- a cure-all. And if either of them is to be effective, IMHO, given your age and the term of your dealing with this condition, I'd wager that that you would need a longer and/or more repetitive course of these medical interventions than might be the case for a younger, more recently diagnosed case (our DS took abx for about 2 years). Additionally, I would suggest dietary, supplements, ERP/CBT and perhaps even some prescription medications to help you gain more leverage over the OCD, even if only as temporary measures.

 

In the end, the PANDAs tests and interventions turned our DS's life around, but even so, he continues to need supports. Whether that's because he was older and the anxiety/OCD was more entrenched by the time we determined the immune condition, or if it's because it's genetically part of who he is and the PANDAS just made it worse, I can't tell you. But I've made my peace with throwing everything at this monster that's at our disposal, and that methodology, in the end, has given my DS his life back.

 

Keep fighting, keep searching and never say never! All the best to you!

[KLW]

Hi, I know of something you could read that may help make more sense of your genetics and may help you sort out which direction you should go with testing and supplementation. I'm an alum of Dr. Amy Yasko's protocol having done that for my son five solid years. I'm positive that helped save him from what could have been a rather miserable life before finally recently learning that PANDAS is the correct diagnosis. One of her books is available free for download at http://www.dramyyasko.com/ then find the little blue link at the bottom of the page that says, "Get the Book". It will download as .pdf immediately upon clicking and you can view from the internet. It is not her most recent book but it is still very relevant. Please look beyond the "autism" title - that isn't what it is all about. One part in particular you may like to see beginning around page 139 of the book is a good explanation of MTRR and MTHFR the role of B12 and methyl groups. Actually, this book has explanations of all of the mutations you listed in your signature plus others. In case you don't know, people with COMT+/+ cannot easily handle methyl groups (I'm thinking you may know that since you are using hydroxycobalamin). But until you get enough consistent B12 levels (which are probably low due to your MTRR's) it is difficult to introduce methyl groups. It takes a while to get past the problems that ensue when you begin to give the body something it desperately needs (like B12). It took months to get my son in a place where he was not detoxing from the tiniest amount of it. But we got there. Low and slow wins the race in this case.

 

Anyway, I think the book will help you understand the mutations better and what you can do to support yourself despite having the mutations.

[Mayzoo]

Our PANDAS doc ran these on kiddos first visit:

 

CBC
Thyroid
vaccine titers
Complete Metabolic panel
IGG, IGE, IGA, IGM levels
Chlamydia pneumoniae
MTHFR mutations (insurance did not pay for this)
Mycoplasma
CMV
Vit D
EBV
Anti-Dnase
HHV-6
Coxsackie A & B
HSV I & II
Celiac
Homocysteine
Magnesium
Cerulplasmin
Copper
Zinc
Ferritin
Lactic acid
Streptozyme
Antistrptolysin o ab
Ammonia, plasma
Triiodothyronine
Selenium
OAT test (urine test)
Neurotransmitter test (urine test)
Porphyrin panel (urine test)

[Wombat140]

Thank you all very much, that's a big help! Wow, Mayzoo's doctor was very thorough - I doubt whether I'd be able to get all of those. (Though I may ask all the same, if there's time - GP appointments are rather short over here, 20 minutes, I don't know if it's the same where you are).

 

Another question: What would I actually do with the results?

That is, for which of these would my GP (family doctor) know what the results meant and what to do with them? If she didn't, where could I get information on what the results meant I should do? Don't want to get all these tests done only to find myself with a page of meaningless numbers and no way of doing anything with them. It's a problem not having a PANDAS specialist.

 

(And please don't say "do some research on the Internet and study how to understand them yourself, you need to be your own expert". We're beyond it. My parents and I are at the stage where we just need someone to sit us down and tell us what to do. :'-( )

[sarojane]

Bartonella. It's an epidemic. Causes OCD, rage, headaches, sore throat, neck pain, rash (like stretch marks or bumps) tons more symptoms. Caught from fleas, ticks, cats, dogs, lice.

Edited October 30, 2015 by sarojane

[sarojane]

Igenex, galaxy, fry labs test.

[4Nikki]

If you are cognizant enough to write this post, I would think hypnotherapy will work for you. I would try to address your phobias first so addressing you other conditions won't be impeded. To make a plan you have to have an analysis. Otherwise everything is a guess. If hypnotherapy, is not an option then medication from your phyciatriac doctor to calm you down enough to get the blood might be another way. Having said this, our dd still has symptoms with all the blood test, Cunningham and the like. This treatments have affects but the just seem to make the symptoms different not make them go away. Rage is the worst.

[Wombat140]

OK! Thanks for the suggestion 4nikki. I always heard that hypnotherapy didn't work for OCD as such, though. Has your experience been different? (It does seem odd to me, because the evidence does suggest it works a treat for phobias, which seem so close in nature to OCD.) Anyway, whether that or not, it's worth bearing in mind for the needle phobia. The trouble is I'm, or rather my OCD is, so strung out and hair-trigger reactive to EVERYTHING at the moment that I'm not sure that anyone could get near me.

 

Another question: What would I actually do with the results?

That is, for which of these would my GP (family doctor) know what the results meant and what to do with them? If she didn't, where could I get information on what the results meant I should do? Don't want to get all these tests done only to find myself with a page of meaningless numbers and no way of doing anything with them. It's a problem not having a PANDAS specialist.

Nobody? Could do with knowing, I'm speaking to my GP about it tomorrow morning.

[Wombat140]

OK, so I've spoken to my doctor. Her initial reaction was that she'd only really have thought of putting me through a blood test if I wasn't eating properly and she wanted to check my nutritional status. I explained why I thought it might be relevant (PANS and the methylation question) and she seemed to take it somewhat seriously, but she seems to be authorised to order even fewer things than I expected.

 

(One bright spot, there seems to be no problem with letting me have a single dose of Valium, so that might help with actually getting the blood.)

 

All she's offering so far is a blood count and a general inflammatory markers test (which would probably indicate whether there was an immune reaction going on, but not what). Do you think that would even be any use, if that's al I can get?

 

She says only the haematologist could order tests for strep antibodies, etc. And I can't see how I'd get a referral to the haematologist without any evidence that I've got anything of that nature the matter with me. Catch-22. Although if the inflammatory markers test came back unexpectedly high, maybe that would make them think it was worth looking into?

 

The rule is that the Vitamin D test can only be done if the alkaline phosphatase level is elevated, as the Vitamin D test costs £50 so they have to ration it a bit - so that would mean taking a second sample. Doctor said that if the alkaline phosphatase level isn't high then that means the Vitamin D level isn't causing a problem. Would this apply to things like COMT mutation issues, or is it only true of more obvious Vitamin D issues like bone density? "Alkaline phosphatase" sounds like something related to bone density.

 

I'm afraid I'm giving a rather bad impression of our health service here! Believe me, I wouldn't be without them, for any normal thing. But American doctors seem to be more willing to try anything and everything without asking too many questions, because it's your money they're spending...

 

I'm going to send her a letter and try and haggle a bit more. Mineral levels mightn't be too difficult, surely, even for our lab - would that be relevant? Oh, and they'd probably be willing to do homocysteine, now I think of it - I'd forgotten that was relevant - I'm pretty sure they throw that one in with routine cholesterol tests. Starting from this low point, is there anything else you'd particularly think of trying to negotiate for?

Edited November 2, 2015 by Wombat140

[Wombat140]

Digging up this thread again to ask if anyone else has anything to advise?

There's a possibility of sending blood to a private lab to have tests done that my regular doctor can't order, perhaps including some immune/infection-related ones, so I need as much idea as I can of what to ask for.

I'm pretty sure we can't afford to do all the tests that Mayzoo's doctor ordered, so I really need some idea of which ones are considered the priorities, if any of you have any idea!

[Wombat140]

I've seen something called CD57 mentioned as possibly a sort of preliminary test for Lyme and related stuff, is that any good? I mean, is it actually accurate? Obviously a preliminary test that rules out something that in fact shouldn't have been ruled out is worse than useless so I wouldn't want to do that.

[Wombat140]

Oh, I've just found this: http://pandasnetwork.org/understandingpandaspans/testing/immunologicalworkup/ Thank God!

 

Just to check, does that sound to you as if it's a good starting point for the PANS side of things, nothing major left out? And where it says "other bacteria and viruses", which ones would you say are priorities for testing, there are zillions of possible ones?

Edited January 31, 2016 by Wombat140

[ibcdbwc]

If you click on "other bacteria and viruses" it will list some of the more common players with regards to infections. On this board, Lyme and its coinfections - bartonella, babsia...), titers for strep, mycoplasma, and some viruses like Parvo, coxsackie and EBV are "popular." The link you posted is a very good place to start. Unfortunately, there are indeed many layers and triggers to peel away. For us personally, our most major player so far has been evidence of Celiac disease. We didn't find that until several years after our PANDAS/PANS journey began. The removal of gluten and dairy was like a night and day change for the better. It didn't "cure" us but it did indeed remove one layer. Point being, with PANS - many of us have different responses to different triggers -- or rather multiple triggers.

 

You can start looking for some of these infectious triggers. Your immune workup would include an assessment of your overall immune status. Are you immune deficient? What is your total IgG and its subclasses, your IgA? Is your IgE elevated indicating possible allergy components? Please do check an ANA, a thyroid panel and perhaps a Celiac panel.

 

For many of us a PANDAS/PANS specialist is/was a huge important step in beginning the journey toward understanding and healing. But we've had to additionally embrace the other facets of functional medicine on our own. Or we've needed the help of a functional medicine specialist. For those with lyme (and there are many), an LLMD is crucial.

 

However, I would at the same time encourage you to understand that while we are on the cutting edge in understanding things like autism, PANDAS, PANS, OCD (and even bipolar, schizophrenia - the entire field of "psychiatry" is affected by such a wonderful surge in new information -- autoimmunity, methylation, microbiome, epigenetics....) there is still much more to learn. Thus, simultaneous cognitive behavioral therapy in addition to addressing the physical roots does help - most especially for us "older folks" - the adults on this board or those of us with teens.

[Wombat140]

Thank you very much, that's quite a help.

 

I once did a strict gf/cf diet for 10 months with no difference in symptoms (weirdly, I had some of the typical "withdrawal symptoms" at the beginning, but that's all!) so I can probably rule out coeliac disease. Thyroid tests done and came back normal, my GP did manage to include that in that previous test (I didn't even ask for that, that was her suggestion, so that was a bit of luck that that's relevant!). So that's something.

 

As for CBT, yes, everyone (understandably) tells me that, but it... doesn't work. My "OCD" at the moment is such that it goes completely off the deep end at any attempt to go against it. So my ambition with all this biological stuff is at least to find some way of getting to a state where that kind of thing is even possible, without physically beating myself up! Well, here's hoping.

Thanks again,

Wombat140