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amother




OP
 

Post  Fri, Jul 17 2020, 3:47 pm
Looking for answers from those who treated PANDAS with long term antibiotics.

Did your Dr run labs to check on titers to know if the antibiotics was helping or did you monitor by behavior only?
Is there any solid way to check and know when to stop treatment?
How long before normally seeing improvement in symptoms?
Additionally, how long after symptoms are better do you stop the antibiotics?
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amother




Red
 

Post  Fri, Jul 17 2020, 4:37 pm
Antibiotics are first in the treatment protocol if you found an infectious trigger (strep, lyme, mycoplasma etc).
You need to remember that it isn't the strep titers causing the symptoms, but autoantibodies attacking brain AFTER the virus and infection. Those are measurable by a blood test called the Cunningham Panel or by regular bloodwork looking for autoimmune markers (like Ana, gad65, etc.)
Antibiotics take time to work, for sure a month or more before improvement is seen.
You need anti-inflammatory TOGETHER with antibiotics and you might see faster improvement.
The idea of long term antibiotics is to try to prevent another infection and the subsequent autoimmune reaction.
For mild cases, antibiotics plus anti-inflammatory might achieve full 100 percent improvement.
For more severe cases, or cases that were caught months or years after it started, immune therapy is necessary to see maximum gains.
The process of healing is LONG, think months and years, not days. (Plus, without immune therapy, there is nothing to prevent the body from having ANOTHER flare when getting sick again with strep etc.)
Think management of flares instead of cures for the disease.
Like the the Marvelous Middos Machine song,
"You gotta have Paaaaaatience".
Hugs to you and your child.
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amother




Red
 

Post  Fri, Jul 17 2020, 4:41 pm
I will also add that you can try holistically.
Natural antibiotics like olive leaf and biocidin.
Natural antiinflammatory like turmeric etc.
They will accomplish the same goal.
Kill the bacteria or virus causing the response and relieve brain inflammation.
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amother




OP
 

Post  Fri, Jul 17 2020, 6:12 pm
Thank you for that really thorough reply!
The symptoms have been going on for more than 1 year. Dr. wants to treat with antibiotics.
Mycoplasma is high. Strep titers is high at 341 (no known strep in years). and positive for lyme (IGGs only).

The problem is the doctor said it's one antibiotic for strep and another for Lyme. Dr. wanted to start with treating the Lyme first, doesn't want to treat both at once because then we won't know what's helping. Is that a good line of thought? I can't remember if the plan is to add an anti-inflammatory but that makes a lot of sense and I will ask for that. strep titers are 341, are we making a mistake to not treat that right away too?

As far as long term antibiotics, once improvement is seen would we stop the antibiotics? (If not using for prevention) Because I'm inclined to treat with two antibiotics for both Lyme and Strep at the same time if we are talking a couple months.

With symptoms of OCD, would flareups mean blood work to check if there's raised titers each time, or automatically return to antibiotics?

Thanks again!
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amother




OP
 

Post  Fri, Jul 17 2020, 6:15 pm
amother [ Red ] wrote:
I will also add that you can try holistically.
Natural antibiotics like olive leaf and biocidin.
Natural antiinflammatory like turmeric etc.
They will accomplish the same goal.
Kill the bacteria or virus causing the response and relieve brain inflammation.


Thanks, I remember seeing turmeric as an antiinflammatory. is that a capsule?

Wondering if holistic is the way to go, would the antibiotics treat both lyme and strep? Not sure what the dr would say to that-definately was planning to prescribe regular antibiotics.
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amother




Red
 

Post  Fri, Jul 17 2020, 6:49 pm
Lyme needs thorough, aggressive treatment. Usually for a year or more. And for sure starting the antibiotics route before adding herbal etc.
Again, monitoring the titers is NOT the way to go because you can clear infections and STILL have brain inflammation and/or get another infection that causes the same autoimmune response (ie. Attack the brain).
You usually need treatment until symptoms clear up (my neurologist says for a at least year after the last symptom cleared but others may hold differently).
Getting Lyme treatment will also cause herxheimer reaction (where symptoms get worse before getting better as bacteria dies off).
Are you with a LLMD (Lyme literate doctor)?
They will usually be extremely knowledgeable on which antibiotic works best for which infection and if or when you should treat all infections together.
For now, I would start with minimum Sandoz brand Zithromax which helps inflammation and the strep and is usually great for Pandas kids. (My child stopped having panic attacks within a month of this antibiotics. His journey isn't over by far due to his many other symptoms etc. But there was a clear noticeable difference in at least one major symptom on this antibiotic.)

Good luck and feel free to ask more questions and I will try to help as much as I can.
There is a great watsapp support group for moms of pandas. Let me know if ud like access.
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amother




OP
 

Post  Fri, Jul 17 2020, 7:35 pm
our dr is part of ILADS, internation lyme and associated diseases society. is that what you mean by LLMD? She's also part of the pandas physicians network. She did say Lyme is hard to treat until you find the right antibiotics, she said there are several different antibiotics that treat it but not everyone's infection responds the same.
She did NOT warn me that there could be a herxheimer reaction... yikes!
did your dr. specifically say Sandoz brand? That would be for the strep though and she wanted to start with treating the lyme.

thanks again for the help!!
not ready to join the whatsapp but I'll let you know if I change my mind.
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amother




OP
 

Post  Fri, Jul 17 2020, 7:42 pm
and last question before shabbos Smile what anti-inflammatory does your son take? Also did they give anything to build up the immune system to prevent future "attacks"?
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FranticFrummie




 
 
 
 

Post  Sat, Jul 18 2020, 2:26 pm
I'm not a PANDAS expert, but I want to warn you that NSAID anti-inflammatories should not be taken for more than 2 weeks in a row. It can cause constipation, stomach ulcers, and liver damage.

You also have to be careful that any other medications will not strain the liver while taking NSAIDs.
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amother




Natural
 

Post  Sat, Jul 18 2020, 11:03 pm
OP if you are on FB you should join some of the pandas groups. Or join Facebook just for the support groups. There are literally thousands of parents treating pandas/pans with strep and Lyme as the triggers and the information sharing is invaluable.

You might want to look up Stephen Buhners protocols, his herbal protocols address both pathogens and inflammation, and he’s helped lots of people where antibiotics have failed them.

The only real way to prevent recurrences is to address the reason it happened in the first place, and the reason is not the infection, the infection is just the tip of the iceberg. You need to address gut health and immune health as well.
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amother




Emerald
 

Post  Sat, Jul 18 2020, 11:27 pm
My pediatrician goes by behavior observation only. Says strep levels in blood aren't reliable indicator.
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amother




Lawngreen
 

Post  Sat, Jul 18 2020, 11:30 pm
amother [ Emerald ] wrote:
My pediatrician goes by behavior observation only. Says strep levels in blood aren't reliable indicator.


Yes, same. I wonder if we are talking about the same doctor.
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amother




OP
 

Post  Sun, Jul 19 2020, 12:21 pm
For the dr that goes by behavior.. how long after behavior subsides does he stop medicine?

For those that test inflammation, any other inflammation markers besides the Cunningham panel and the ones mentioned above. We took a TON of labs, except Cunningham, and I can't find either of those.
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ra_mom




 
 
 
 

Post  Sun, Jul 19 2020, 12:52 pm
amother [ OP ] wrote:
our dr is part of ILADS, internation lyme and associated diseases society. is that what you mean by LLMD? She's also part of the pandas physicians network. She did say Lyme is hard to treat until you find the right antibiotics, she said there are several different antibiotics that treat it but not everyone's infection responds the same.
She did NOT warn me that there could be a herxheimer reaction... yikes!
did your dr. specifically say Sandoz brand? That would be for the strep though and she wanted to start with treating the lyme.

thanks again for the help!!
not ready to join the whatsapp but I'll let you know if I change my mind.

Sandoz azithromycin is used for its anti-inflammatory properties when there is no active infection.
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amother




Emerald
 

Post  Sun, Jul 19 2020, 1:51 pm
My doc goes by my judgement and when I feel my so is ready to wean his antibiotics. Similarly, he goes by my report and judgement when we need to restart antibiotics too. It generally takes about 3 months for my son's behaviors to settle
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amother




Natural
 

Post  Sun, Jul 19 2020, 11:51 pm
Sometimes you need to trial going off keeping in mind that you might have to go right back on. Thee is no clear cut way to know if you are ready to go off.are you working on gut and immune health at all?
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amother




OP
 

Post  Mon, Jul 20 2020, 6:32 pm
If we are doing trial of zythromax for strep/off label lyme and inflammation. How soon would I see results? how many weeks, months etc to know we are on the right track? I'm talking about seeing noticeable difference in OCD symptoms. Thanks.
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amother




Periwinkle
 

Post  Mon, Jul 20 2020, 6:52 pm
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
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amother




Natural
 

Post  Mon, Jul 20 2020, 7:26 pm
amother [ OP ] wrote:
If we are doing trial of zythromax for strep/off label lyme and inflammation. How soon would I see results? how many weeks, months etc to know we are on the right track? I'm talking about seeing noticeable difference in OCD symptoms. Thanks.
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.
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amother




Papaya
 

Post  Mon, Jul 20 2020, 8:07 pm
amother [ OP ] wrote:
If we are doing trial of zythromax for strep/off label lyme and inflammation. How soon would I see results? how many weeks, months etc to know we are on the right track? I'm talking about seeing noticeable difference in OCD symptoms. Thanks.

You should see something within a few days, a week max. If no change at all, you're barking up the wrong tree.
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