Adult PANS - lab results

[kakrpa]

Hi all, I received some results back today that I think might shed some light on the severe anxiety / OCD I've been dealing with for...years. Anyone out there with similar results and/or experiences??

 

Coxsackie A IgG/IgM Antibody

Coxsackie A7 IgG 1:800 High titer Neg:<1:100

Coxsackie A9 IgG 1:1600 High titer Neg:<1:100

Coxsackie A16 IgG 1:1600 High titer Neg:<1:100

Coxsackie A24 IgG 1:1600 High titer Neg:<1:100

Coxsackie B Virus Antibodies

Coxsackie B Virus, Type 1 1:320 High <1:10

Coxsackie B Virus, Type 2 1:80 High <1:10

Coxsackie B Virus, Type 3 1:160 High <1:10

Coxsackie B Virus, Type 5 1:160 High <1:10

Coxsackie B Virus, Type 6 1:80 High <1:10

Immunoglobulin G, Qn, Serum 764 mg/dL 700 - 1600

IgG, Subclass 1 408 Low mg/dL 422 - 1292

 

M pneumoniae IgG Abs

549 High U/mL 0 - 99 Negative: <100 Indeterminate: 100 - 320 Positive: >320

Immunoglobulin E

Total 3 (LOW END) IU/mL 0 - 100

[Mayzoo]

My kiddo had similar results. She does not have mycoplasma, but does have EBV, and HHV-6 along with very high titers for varicella. She had high titers for rubella, but doc got those down with amantadine for a year.

 

Now her coxsackie A IGMs are negative (doc forgot to reorder coxsackie . Her HHV-6 titers are half or less now, and I believe her EBV is going down.

 

We are using Buhner's EBV viral protocol. Below is a list of her original symptoms, many of which have resolved. We are in a minor flare right now, but still nothing like original issue:

 

Symptoms (all new since onset, so likely unrelated to other conditions)--some are slowly improving with time and lots of work:

* Insecure, clingy. I cannot go to bathroom alone any longer.
* Frequent spills of her drinks
* Difficulty transitioning from room to room everywhere including our house.
* Increase in sound sensitivity
* Selective mutism (no speaking) 98% of the last 3 months. Called selective because she mouths words sometimes when she reads and if forced, she will speak in a whisper. About 7 days ago she began speaking again (less than normal), but 90% of the time in a whisper.

* Complains of pain in ankles, knees, left hand, and shins.
* Sleep difficulties:
* Wakes up numerous times in the night "hollering/screaming" wanting to get up. Now that she is speaking a bit again, she says she had a bad dream and "can't go to sleep"
* Going to bed is now traumatic from the get go. Once in bed she 'hollers" for up to two hours until she finally goes to sleep.
* When she wakes up, if allowed to, she will lay in bed and "holler" for up to two hours before she gets up and begins the day.
* Will not get herself up out of bed at night or in the morning in any timely manner (takes hours).
* States I cannot brush her teeth (she has never completely been responsible for brushing her teeth-but never fought tooth brushing before).
* Very light sleeper now, wakes up with even tiny noises in the house.
* Frequently day/night incontinent. States she cannot pee or poop in the potty.
* No longer wants to go outside.
* No longer will get in the car without a fight/emotional upset, crying.
* No longer will shower or bathe without a fight/emotional upset, crying.
* No longer will wash hands without a fight/emotional upset, crying.
* States her daddy cannot love her. Has stated others cannot love her too.
* She will not eat lunch/dinner unless coerced or bribed. Dinner is traumatic even if when she says "I can't eat" I tell her "then don't eat".
* She will no longer read out loud to me. She never read quietly until this happened.
* She fights tooth and nail through school work.

 

I will post more or answer questions if I can tomorrow or the next day. Tired right now and going out of town tomorrow.

Edited January 15, 2015 by mayzoo

[kakrpa]

Thank u mayzoo! I just started valtrex - not sure what to expect. Am curious about Buhner protocol, but I'll see how this goes first. How is your dd doing now?? Did her symptoms improve as her numbers dropped? I started experiencing severe anxiety / pure-OCD at about 23 years old and have experienced it ever since. There was no real explanation for it either (and I'm now up to 4 diff meds for it). I'm 36 now and I'm finally maybe getting to some answers! Have you heard of others in a similar situation? I'm working with Dr T.-he's awesome! Thank you for your reply mayzoo...not sure who to talk to about all this so I appreciate your response.

[Mayzoo]

You are very welcome.

 

Here is the protocol I have her on:

 

Chinese Skullcap 750mg (h/m) 1 cap tid

Chinese Skullcap 500mg/Licorice 250mg (h/m) 1 cap 3 x day (on 30 days off 30)

Cordyceps 750mg (h/m) 1 cap 3 x day

Motherwort Tincture 1 dropperful tid

Lomatium Tincture 1 dropperful tid (on 30 days off 30)

Red Root tincture 1 dropperful tid

Rhodiola 327mg ½ tablet bid (am/3pm)

Lemon Balm 750mg 1 cap tid

Rheisi Caps 188mg 2 caps bid

L-Lysine 750mg 1 cap bid

Astragalus 470mg 1 cap tid

Ginger Tincture .75ml bid

 

Isatis tincture 2 dropperfuls tid (on 30 days off 30 days)

 

Japanese knotweed 750mg 1 cap tid

 

Kudzu 750mg 1 cap tid

 

Bid=two times a day. Tid=three times a day.

 

And she is on three herbal antibiotic: Cryptolepis, Sida Acuta, and Alchornea.

 

I make her tinctures myself now and I buy the powders in bulk and fill the caps myself now. It is saving us a ton of money to do it this way.

 

Up until my husband's Christmas party she was doing amazingly well. Her energy was back up and she wanted to go outside every day again. She had begun doing the things she loved and had not done in 18-24 months. At the party, she was exposed to something that has caused a minor flare, and we are still struggling to get back from that. I had to restart her on some pharmaceutical antibiotics since then, but now we are getting back on track. When she is stable for a while, I will titrate off the pharm abx again.

[nicklemama]

Wow, those are some coxsackie levels! Glad you are getting answers. Someday, I predict many, if not most, psychiatric issues will be addressed through medicine, not psychiatry.

[kakrpa]

I agree nicklemama! Have you all heard of such high levels causing anxiety/OCD? I feel like I've been down this road before (of thinking I've found the cause of my out of nowhere anxiety/OCD), and am afraid of setting myself up. I've been started on Valtrex, and am only a few days in, so we'll see how it goes.

 

What type of lab results did your son have? Myco? Coxsackie?

 

Thanks for your input - it greatly helps to not feel so alone.

[Mayzoo]

Kiddos were as follows:

 

Cox A7 1:1600

Cox A9 1:1600

Cox A16 1:1600

Cox A24 1:1600

 

Cox B6 1:8

Cox B4 1:16

 

 

HHV-6 10.71 <0.76

 

EBV >600 <18

 

Varicella 1113 <135

 

 

Now the Cox A is negative, and the doc forgot to order the cox B. Her HHV-6 at last testing was 4.54, and the others have not been retested yet. She still has anxiety in after exposure to illness (flare), but no anxiety otherwise.

[kakrpa]

Wow mayzoo, those are some high numbers - I think I can relate. I bet you both have been through a lot. Is there any particular part of your regimen that has seemed to help the most? Least? Btw, I'm waiting for my HHV6 and EBV results too.

Edited January 20, 2015 by kakrpa

[Mayzoo]

So far, the herbal anti-viral protocol seems to have done the most for both symptoms, reducing titers, and reducing likelihood of illness hence flares. We started in May, and in December was our first flare, and this one is pretty mild but persistent. Kiddo was sick once in August I think, but had no flare with it, then kiddo was exposed during a Christmas party to something . We refuse to stick her in a bubble however. We do hope to modulate her immune system enough so she can heal on a more long term basis and thus get sick much less. We have been on the road of PANDAS since Sept 2011.

 

Helped the least I would say was when we picked one herbal item and hoped it would cure everything, then picked another one item, then another one item. It seems to take the whole protocol for kiddo to see results. They really seem to work together much better.

 

For immune regulation she is taking:

 

Reshi

Cordyceps

Astragalus

and a few of the anti-virals modulate the immune system as well.

[Mayzoo]

Wow mayzoo, those are some high numbers - I think I can relate. I bet you both have been through a lot. Is there any particular part of your regimen that has seemed to help the most? Least? Btw, I'm waiting for my HHV6 and EBV results too.

 

I guess you and my kiddo have the same mantra....if you are going to do something, do it RIGHT. If you are going to have high viral titers.....have 'em REAL high LOL. Ten fold plus too high to be exact . You two just need to be less efficient .

 

Her rubella was 169 with a normal below 9. We have that more under control and down to 14 I believe.

[kakrpa]

@mayzoo yep, that's right...Go Big or Go Home! LOL Did u guys ever try valtrex? I'm glad to hear shes doing better,.except for recent flare. I hope to get better too...

[Mayzoo]

@mayzoo yep, that's right...Go Big or Go Home! LOL Did u guys ever try valtrex? I'm glad to hear shes doing better,.except for recent flare. I hope to get better too...

 

No, we have not tried zovirax, valtrex, valcyte or famvir. She is only 12 and the side effect profile of the two (Valcyte/Famivir) that are indicated for for all three viruses she battles concerns me. Valcyte (first choice for her viruses) has also not been on the market for long in enough, IMO, to know what effects it would have on the development or fertility of a 12 year old girl. I wanted to try the less problematic route first.

 

I hope you see improvement soon too.

Edited January 21, 2015 by mayzoo

[nicklemama]

My son has normal titers for those things you listed. He has Lyme disease. Having high coxsackie titers is a common finding in PANS, however. It's not just strep. I also see your mycoplasmas titers are high, another common PANS finding.

[kakrpa]

@nicklemama thank u...I'm glad to hear ur DS has normal levels. Did he used to have high Coxsackie levels? If so, did u use Buhner protocol??

[nicklemama]

He never had high titers to anything. We struggled to treat him. He had IVIG twice. When we tested and found lyme and two coinfections, 2.5 years after starting treatment, and treated those, he got a lot better. We use antibiotics to treat his lyme and co.