PANDAS questions | Imamother

amother

Mon, Jul 20 2020, 9:34 pm

amother [ Periwinkle ] wrote:

From my experience working and shadowing in a pediatric office and carefully observing treatment details:
Lyme is usually treated with amoxicillin Or doxycycline
Strep is treated with a wide range of meds including amoxil.
In cases with positive Lyme iggs and slightly high steep titers- usually treated with amoxil for a month and new bloodwork a few months later to see results and what to do next.
For your info, 341 is not considered very high for strep titers, only slightly elevated
Zithromax is used for recurrent strep infections, never heard of it for Lyme

ooh can I please pick your brain?? my son has been on doxycycline for at least seven months. a few months on twice a day and a few months on once a day (still on once a day) - for acne! (he's a teen) this was before this lyme diagnosis. and we saw no help in behaviors or OCD (worsening OCD if anything). And he's allergic to Amoxil! so would zythromax be a next step? I think it's off label for lyme. Or would we try another antibiotic altogether?

is 341 high if he hasnt had a case of (known) strep in years. and I mean years! like I can't remember his last case of strep throat.

amother

Mon, Jul 20 2020, 9:41 pm

amother [ Natural ] wrote:

ocd is often the last to go. There is no specific number, but if you haven’t seen improvement after 3 months I would say you need to change something. I don’t think azith will do much for Lyme. Chronic Lyme is so hard to treat Sad

And with pandas/pans/neurolymeit’s so much harder because youre not targeting an acute infection, it’s chronic, and then there’s the neuroinflammation to contend with...I’m sorry, ocd is so rough Sad

we’ve been battling that for over 4 years. A lot of symptoms are so much better but the ocd... would you consider integrative care? have you looked into herbal protocols at all? We’ve been seeing amazing success with Stephen buhners protocols and homeopathy.

The OCD is bad, he can't function normally. we tried the usual SSRI's and they didn't help him. Our doctor also treats holistically, but def wants him on antibiotics to start. it just sounds like Lyme is more complicated to treat with an antibiotic compared to strep/pandas, so I was thinking maybe the zythromax is a good start also bec it is good for inflammation and then if not effective we know we can leave the strep out of the picture and deal with the lyme alone. but I'm not sure the dr will want to go that route, I know she wanted to treat the lyme first.

amother

Natural

Tue, Jul 21 2020, 11:05 am

amother [ OP ] wrote:

im not sure I understand. Are you saying you’re trying azith and if it doesn’t work it means strep is not a trigger here? Because if that’s what you’re saying, you can’t really know that unless you treat lyme too. Because if they are both causing ocd, even if the azith is technically helping with strep the ocd will still be there until Lyme is treated. Make sense? Lots of kids are on multiple antibiotics for different infections. Azith is not the abx of choice for Lyme.

amother

Natural

Tue, Jul 21 2020, 11:21 am

amother [ OP ] wrote:

im not periwinkle but I’m going to say that the strep titer is hardly relevant. He could have had subclinical strep, asymptomatic strep, perinanal strep, strep in the gut or anywhere else in the body. Or, his immune system is being set off by exposures to strep, which is everywhere. Or, his immune system is fighting a phantom infection. There’s also a chance that strep is not one of your triggers.

I also just saw about the doxy. So first of all the dosing may not have been right. Second of all, was he ever on both together. Third of all, what are you doing for inflammation??? Antibiotics are just one piece of healing. It won’t cure your child.

Also, how are you supporting detox? With all these heavy hitting antibiotics, you’re bound to have an awful lot of die-off/herxheimer and that can be exacerbating symptoms or why you’re not seeing an improvement.

amother

Natural

Tue, Jul 21 2020, 6:01 pm

amother [ OP ] wrote:

lots of good points here! esp I didn't think about treating strep but mostly ignoring the lyme will still have the lyme causing OCD. didn't think of that!

he's taking cholestyramine for detox.

I don't know what she wants to use to treat the inflammation. I will ask at our upcoming appointment.

cholestyramine is such an interesting choice for detox. A) it’s an rx, so stressful on liver and kidneys in its own way, B) I’ve heard it used mostly for mycotoxin detox. Not die off from strep and Lyme. There are lots of things you can use, the focus is generally on opening methylation pathways with minerals and b vitamins, transulfuration pathways with epsom salt and glutathione, binders like charcoal and pectin to escort toxins out through the gi tract, and supporting the liver with things like silymarin, castor oil packs and herbals like liver liver from bioray.

Please ask about addressing inflammation and the over active immune response, this is such a big piece over here. Allopathically there’s ivig, then alternatives like ldn etc.

One more thing, ocd has many causes, as does brain inflammation. All Lyme and pandas kids have more than just Lyme and strep going on. There are gut issues, methylation issues, heavy metal issues, mineral imbalances, nutrient deficiencies, food intolerances and hidden allergies, etc etc etc. Any of these, just on their own, can cause ocd and anxiety. So even as you address the pathogens, you need to be mindful of these other sources of neuroinflammation and treat them, or your child won’t respond. It’s like that nails in the foot analogy. I guys foot is on fire cuz there are nails stuck in the bottom. If you pull out 1 or 2 nails, his foot will still be on fire. Until all the nails are out.

Do you feel comfortable posting who your dr is?

amother

Tue, Jul 21 2020, 6:34 pm

Sorry I didn't give you the full picture..the detox IS for mycotoxins. We are just getting started on helping him beyond regular and thats the first step we are taking. (After positive labs) she is then going to add the antibiotic. (Just im not sure which, she cant do the usuals bec of reasons mentioned above) And I also brought up with my reg pediatrician and he suggested the Zithromax. But I think the "lyme" holistic dr (m.d. psychiatrist....not only holistic)will want a different one more geared to lyme. But its been a week + on the detox and Im just anxiously waiting for more of a fix! I will ask abt detox for the lyme as well. Thanks

amother

Natural

Tue, Jul 21 2020, 6:38 pm

amother [ OP ] wrote:

you need more detox support and more anti inflammatories. But a week is a very short time given everything you have going on.

OP your drs sound wonderful but they aren’t living with these kids day in day out. Speak to some mommas who have been down this road...

amother

Tue, Jul 21 2020, 6:47 pm

amother [ Natural ] wrote:

Yes I know a week is short...I just want to start treating more! Wink

Is lyme with ocd always considered pandas or would we need to do the cunningham panel in order to know that?

amother

Natural

Tue, Jul 21 2020, 6:54 pm

amother [ OP ] wrote:

Yes I know a week is short...I just want to start treating more! Wink

Is lyme with ocd always considered pandas or would we need to do the cunningham panel in order to know that?

as of now pandas and pans are clinical diagnoses because there aren’t yet any reliable bio markers. Clinically, neuro symptoms caused by Lyme would be considered pans, not pandas, or simply neurolyme. Recently there have been some exciting advances in the bio markers research, and maybe sometime not so far off there will be a reliable test to prove for certain that your child’s symptoms are being caused by autoantibodies to specific regions in the brain. Like I said, there are many pathways via which infections cause inflammation in the brain, you can have pans even with a negative cunningham. A good doctor will do the detective work for you, run all the relevant testing, to figure out what is really going on behind that pans/pandas presentation.

amother

Natural

Thu, Jul 23 2020, 5:06 am

amother [ OP ] wrote:

Looks like Dr wants to treat mold for a month first and then do the antibiotics for the Lyme. said its too overwhelming for the body to add too much at once. and can cause increased side effects.

I can hear that. Are you looking for the source of the mold?if you want you can spend the month on opening detox pathways so that when you do start treating Lyme the body is able to deal better with the die off

amother

Periwinkle

Thu, Jul 23 2020, 9:39 am

I feel bad, but doesn’t sound like his OCD is coming from Lyme or strep. His Lyme is prob old esp if there’s only IGG’s and he’s been on doxy so it should be okay. As a btw, how many positive IGG’s are there? In order to call Lyme positive you need 6 positive bands, and there are 10 total- 7 IGG’s and 3 IGM’s. IGG’s are not usually current infections, IGM’s are.
Having said that, it’s Still possible to blame his OCD on strep and therefore treating with Zithromax should help. I still stand that 341 is not so high.
I never met your son and I don’t want to bash your parenting but I absolutely hate when parents can “prove” pandas and/Lyme and then blame their kids issues on it.
It’s always nice to have a physical cause to psychological behaviors but don’t go overboard with that.

amother

Natural

Thu, Jul 23 2020, 5:14 pm

amother [ Periwinkle ] wrote:

you can’t prove that it’s NOT pandas or Lyme either. She has tried psychotropic meds and they didn’t work. What has she got to lose? Both Lyme and strep are extremely resistant infections, especially when they are chronic. You can’t go by titers, nor by amount of time treated, nor by type of meds used. And cdc positive criteria is garbage. Everyone in the Lyme world knows that.

FWIW, OP I totally believe you.

amother

Thu, Jul 23 2020, 5:27 pm

amother [ Periwinkle ] wrote:

Actually it's 5 or more positives for a lyme diagnosis according to the CDC criteria and he has 5 positive IGGs.

I don't know if the Lyme is what's causing his issues. I do know that he has had a case of "pandas" from strep years ago. I don't think Zithromax is a mistake to do, I just don't know if that will cover it all. I think it's actually worthwhile to try it and see if it helps and I'll speak to my dr at our next appointment. She said to wait a month until we start the antibiotics, to work on the mold in the meantime.

And trust me I didn't jump to pandas with this. we started with a psychologist, then a psychiatrist, and after months of different meds and none doing the job it is very possible that it's something else causing it so we are looking into the pandas route and came across the lyme and mold issues.

amother

Thu, Jul 23 2020, 5:27 pm

amother [ Natural ] wrote:

Thanks for the support!

amother

Thu, Jul 23 2020, 9:11 pm

amother [ Natural ] wrote:

yes that's the plan for the month of detox.

We are going to have to get a mold test. We might do it ourselves with mycometrics. When I called "the mold guy" they quoted up to 1k for the initial check, then another couple thousand on the testing, and then the remediation would be on top of that if necessary