kakrpa

We are dealing with high mycoplasma for 2 of our children. We have been on clarithromycin for a couple months, azithromycin for a month and doxycycline for one round. We take curcumin for inflammation, an initial steroid burst, and supplements for immune support. We are currently on fluconazole for yeast. We are better but not 100%. We still do have mycoplasma though. We are thinking about trying Dr. Horowitz's protocol of multiple antibiotics for bacteria without a cell wall. You can google him (he is a lyme doctor) and he has several presentations on youtube. One is "Why am I not getting better?" and "Herbs, Hormones and Heavy Metals." There are a couple different presentations on "Why am I not Getting Better" topic. The presentation on Herbs, Hormones and Heavy Metals is fabulous also. Something to consider looking into.

Hey everyone,
 
My name Is Mike B, I've been posting a lot on here recently due to my issues with severe anxiety/ocd since getting sick in early October of last year. As a young kid I got strep a lot (I am 21 now) so I pushed the strep thing a lot to all my doctors. A month after getting sick I was on Ceftin. (The one antibioitic my mom claimed fixed my pandas issues/strep) The problem is that while the ceftin did help with a lot of my physical symptoms, it did nothing for the anxiety/ocd.
I recently saw Dr. Latimar and was told to get more blood work done on mycoplasma as well as other possible triggers. Well today I found out that I have a very high number for Mycoplasma. BING. This made sense due to the fact that a majority of my remaining physical issues fall in line with the symptoms of Myco P. So now I am really hoping that that's the only other issue I am dealing with.
 
Anyways since it has been 4 months of being sick, my anxiety and ocd have gotten really bad, so bad to the point where I am considering dropping out of college this semester.

My question for everyone is, if you have dealt with a mycoplasma issue in the past what was the antibiotic/treatment that worked the best for you?
 
From a lot of online research that I've been doing it seems like Biaxin is a popular and successful choice, but I also read things about that antibiotic causing anxiety problems for some, which is the last thing I need right now.....
Anyways thanks to anyone that can help!
 
Mike B

Just thought I'd ask one last time since tomorrow is the day I get the mycoplasma p medication.
 
Anybody have any positive results for myco p with any specific antibiotic? I know Z-packs don't work for me but besides that I am open to anything. Levaquin, avelox, doxy, mino, and biaxin are the 5 I'm most likely considering.
 
Any advice would be greatly appreciated.
 
Thanks
 
Mike B

Ophelia!!!!!!!
how did you finally get these results? When w ere they run?
I am so sincerely happy that you may finally get some answers, and some treatment.
can you go back to the AE alliance. Org website and do some searching there?
thank you for posting here to share with us.

you deserve answers. I am so glad you did not give up.

I suggest starting with Dr kovacevic in chicago...

My daughter has PANS first flare November 2013. She is high functioning autism. Flipped overnite(anxiety, invasive thoughts, separation anxiety)short of long, Dr. put her on Valtrex 500 3 x day within a week she not only was better, but the BEST in her whole life. she was awakened!!!! out of a deep sleep. He mentioned she should take probiotics because Valtrex(antiviral can cause yeast growth just like antibiotics)
my daughter's PANS is from viruses HSV!, HHV6 and Varicella (chickenpox) November of 2013 was caused by Dad's fever blister (he has gotten for 30 years + when stressed.
Anyway, from December 24 2013 when we put her on Valtrex she was great!!!!!!!! She took kirkman bio complete probiotics but not regurlarly.
Then May 1 2014 she got a stomach bug, very ill, pooped blood, multiple emergency visits. They checked the usual suspects. nothing,
Had an endoscopy, colonoscopy, nothing. Her mental state was deteriorating. EEG, MRI, nothing. Spinal tap, (lumbar puncture) nothing. Her serum antibody for chicken pox thru the roof !!!
Was in a Euless TX hospital for 10 days we removed her and took her to Zale Lipsky Psy admitted thru emergency. UTSW(Univ of Tx Southwest) I told them about PANDAS AND PANS. they checked for NMDA receptor encephylitis.
I asked for an immunologists, infectious disease, they said we are addressing this from a psychiatric position she has psychosis NOS. (no idea) The best hospital that Dallas can provide......Ha. they had her
So heavily sedated. Our immunologist was out of the country.
Where am I going with this. After looking back, me the immunologist, forget Zale Lipsky.
What happened was, The Valtrex killed off the good stuff in the intestines that keeps bad bacteria in check and also keeps yeast in check. So she had Clostria Difficule and Yeast overgrowth. C-Diff can cause strange behavior and can eat holes in your intestines and she had PANS (Pediatric autoimmune neuropsychiatric syndrome)
 
She got out of hospital July 29, 2014 after many tests. Her chicken pox titer and HSV and HHV6 still high we put her back on Valtrex 1000 2 x day, also found out she had C-diff (bad bacteria) By November of this year we had her off all antipsychotic meds ie., zeprexa, zoloft, activan you name it.
As of November 2014 we had her on Valtrex (antiviral)1000 2 x day Flagyl (antibiotic) 3 x day 150mg to kill c-diff, Dyflucan (antifungal) 150 mg 3 times a week for yeast and 2 Probiotics Bio complete and Sacc/Builllari plus a host of supplements.
 
She was doing great from Nov to Jan 1 2015 then she had a flare because she quit taking the antiviral/antibiotics.(she said she had teeth in her stomach) I let my guard down.
We are still battling this, I lost my job Jan 15 due to her flare up. It has now been going on for over a year.
 
we see her immunologist in Plano, TX once a month. He is the one knowledgeable doctor in the area of PANDAS, PANS, etc.
 
Hope this helps.
 
Now with all this being said. It sounds like you already had anxiety before the valtrex, so I don't know how long you took it. But because my daughter was on Valtrex 6 mos I believe the C-diff grew, once we put her on flagyl with the VAltrex she really got better in Nov and went back to work as a sacker at a the grocery store.
 
What i am trying to tell you is. Be it antiviral, antibiotic, side effects include gut dysbiosis. You have to take probiotics for yeast and probiotics that contain yeast for the C-diff.
C-diff in itself can cause psychosis.
 
YOU WILL TAKE THE VALTREX FOR A LONG TIME BUT YOU MUST SUPPORT THE GUT AND YOUR IMMUNE SYSTEM IN GENERAL,
Your doctor needs to do more blood work up on you to check your vitamin levels.
A stool sample can be submitted to check for Clostria Difficule.

-

I am a very well educated, certified and licensed pharmacy technician. I have taken lots of pharmacy courses and worked in all the settings available except mail order. I have made IV and TPNs. I also worked in a compounding pharmacy for years, hence I am comfortable with this whole process . I can crank out about 1200 capsules in a day at home before I get too bored/tired LOL.
 
Kiddo will only drink plain water or I would give the infusions a try.

We are using his EBV protocol with what I would consider outstanding results so far (see my siggie). We are in a minor flare right now, but still manageable, and we had an awesome few months before that. I am looking forward to returning to those awesome times, and I have solid hope after we kick what is causing this flare, we will be back on track again.
 
I also recommend his herbal antiviral book for anyone who may dealing with viruses as well. We have both the viral and abx real book and a kindle edition of each (only books I have real and digital versions of!) I have never regretted buying any of it.

Just sharing an update...going to stop valtrex. Been on for 5 days, taking only half dose first couple of days to ramp up. Then started taking full dose yesterday and I'm definitely more emotional, depressed (was doing fairly well before), and anxious (which is already my biggest battle). It's not horrible, but I know my sign, and don't want to risk making my anxiety/ocd worse...and I'll not be taking anymore.

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.

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.

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.

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.

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.

Welcome to the forum! For my kids, treating methylation issues has brought great results, so I think it's great that you're pursuing this. But I will say that if you have an adult variant of Pandas/Pans, then you'll also need to treat the underlying infection before seeing complete relief. If you haven't already, you may want to read Swedo's paper from 2012 http://intramural.nimh.nih.gov/pdn/PANDAS-to-PANS2012.pdf where she lists other infections beyond strep that you may want to test yourself for. Mycoplasma infections and lyme have been big culprits in this community.
 
As for your mutations, from what I've read, I haven't come across a specific issue between CBS and MTHFR. CBS generally upregulates the entire transsulfuration pathway and therefore effects all of the methylation processes upstream and downstream, not just MTHFR. And to treat MTHFR, you need methylfolate, NOT folate. Here's a good list of what aliases a "good" methylfolate will go by and which types of folate to avoid: http://mthfr.net/l-methylfolate-methylfolate-5-mthf/2012/04/05/. You also need to supplement with either methylB12, hydroxyB12 or adenoB12, which works as a cofactor with methylfolate. In your case, I'd guess that methylB12 would be your best bet, since you don't have COMT issues that might cause you to be an overmethylator. But MAO-A can also effect this and if you found yourself a little anxious or agitated on methylB12, you could give hydroxyB12 a try instead.
 
My daughter has both MTHFR C677T +/- and CBS +/-. She found tremendous relief from anxiety and mood issues my treating her MTHFR with a very low dose of methylfolate (67mcg) every other day and 1000mcg of methylB12 every day. My husband has the same mutations and he takes 800mcg of methylfolate and 1000mcg of methylB12 sublingual daily.
 
Yasko says you're supposed to address CBS first, and for that, my family uses 75mcg molybdnenum,100mg C0Q10 in the form of ubiquinol (there are 2 types of CoQ10 - ubiquinol is better absorbed of the two - and more expensive) and they've reduced protein and dairy consumption. Yasko suggests Yucca but that's estrogenic and I didn't want to compound any problem by adding estrogen into the picture.
 
I'd personally suggest focusing on CBS for a few weeks and then introducing a very low dose of methylfolate+methylB12 and building up to a point where you feel calmer. Maybe start with 400mcg methylfolate+1000mcg methylB12 and do that for 2 weeks. Then go up to 800mcg methylfolate and see how you feel for two weeks. Then either stay there if you feel good or increase it again. Some people stay at 400-800mcg and some end up at 5-10mg. But if you go too high, you'll start to feel the anxiety and mood issues return. That means you've crossed the line and you'll need to decrease to find your sweet spot.
 
You may find that addressing these two things will do the trick for you. If not, I'd make MAO-A your next target. MAO-A + means your body doesn't degrade dopamine or serotonin as quickly as it should. It's like flooding the carburetor. It takes you longer to calm down from a fight/flight situation. So you definitely want to avoid MAO-A inhibitors like anti-depressants and cough/cold medicines. Copper helps upregulate MAO-A, so test your copper levels and pay attention to your zinc/copper balance. When my son's copper levels got low (he has MAO-A +), supplementing with 2mg copper helped his OCD.
 
You're fortunate in that you don't have COMT mutations. Most of us here have found this in our kids, adding to their anxiety issues. You can review this document if you haven't seen it already http://www.heartfixer.com/AMRI-Nutrigenomics.htm and that will help with some ideas on your other mutations. But the MTHFR issue was key for my DD and you may find that finding the right dose of methylfolate + methylB12 helps you as well (in addition to testing for Pans infections/triggers).

bumping this up
 
Welcome to the forum kakrpa