Mycoplasma/PITAND cases

[michelew]

My DS12 was diagnosed with PITAND in October of 2011. My husband and I were the ones who dx him, as like so many of the other families on this forum, our son had completely stumped all of the doctors we had taken him to for about a year. His symptoms started out in October of 2010, with major OCD, intrusive thoughts, severe separation anxiety, etc. He had been hospitalized for an adrenal crisis, and while he was in the hospital he also tested positive for Mycoplasma Pneumonia. Shortly after he was released from the hospital the OCD began, with intrusive thoughts, compulsions, etc. These symptoms continued to worsen throughout the following year and eventually my son was exhibiting ALL OF THE PANDAS symptoms, including OCD, separation anxiety, suicidal thoughts, anorexia, social withdrawal, tics/movement disorders and self injurious behaviors.

 

We felt so blessed when we learned about PANDAS/PITAND, as we were sure we would finally be able to heal our son. We shared our son's story with the neurologist who had been treating him for his sudden movement disorder (which we feel was a direct reaction to an SSRI he was on)and she agreed to get him tested for Mycoplasma and Strep. Sure enough, a full year after testing positive for Myco during his hospital stay, his IGG and IGM numbers for Myco were extremely elevated (IGG >5, and IGM 2947). As a result the neurologist did believe that what was going on with our son had be related to the infection, and she began prescribing Doxycycline at 200 mg/daily. She also felt that we should also do an IVIG. We did this about 3 weeks after we started the Doxy.

 

Today, almost 5 mos. after the Doxy was started, and approximately 4 mos. post IVIG, he has shown improvement (no longer suicidal, his eating is much improved, and the self injurious behavior is also much better), but he still has a very long way to go (always seems angry, extremely irritable, OCD continues, extremely anti-social, says he hates all people, etc.)

 

One thing I forgot to mention, is that we also added Azithromycin (500 mg) daily, to use in combination with the Doxycycline 2 months ago. My son is still on both.

 

I guess I'm posting to ask how many of you out there have successfully treated your children who had the Myco triggered PITAND, and what path was your road to success. Although we're pleased that our son has shown some improvement, we can't help but wonder if we should be doing more.

 

Also, the neurologist, all of a sudden seems to be getting nervous about continuing the long term abx, and I'm just wondering what we should try next. It seems as though we have reached a standstill in his recovery. My husband and I also worry about how long we should keep our son on these abx. We just don't know what the norm is, or if there is even a norm.

 

Sorry for the long post. Future ones I will try to keep to a minimum. :-)

[LNN]

Here's an article about myco p that might be helpful

http://www.morgellons-uk.net/?p=467

 

I don't have direct experience, but my understanding is that it sometimes takes using more than one abx at the same time to treat myco and that not everyone responds to the same abx combo. Given the length of time your son has been fighting this, it's possible there's more than one infection - either bacterial or viral. Sometimes chronically ill people then get exposed to other infections and can't mount a strong response, so they end up having layers of illness.

 

If your neurologist is getting faint of heart, you may want to look for either a Pandas doctor, a lyme literate doctor (LLMD), a DAN doctor or an integrative/osteopathic doctor. These seem to be more open minded to chronic infections and long term abx use. If you post what area of the country you're in, people may be able to offer suggestions.

 

As for duration of abx, the most important thing is to protect the gut with lots of probiotics. In lyme treatment, abx are often rotated every few months to reduce the chances of bacterial resistance. I look forward to the day I can get my kids off of abx, but we aren't there yet. My son has been on abx of one type or another for 3 years. I'm not thrilled about it but the alternative is unthinkable right now. But it remains my goal.

[HT's Mom]

Here's an article about myco p that might be helpful

http://www.morgellons-uk.net/?p=467

 

I don't have direct experience, but my understanding is that it sometimes takes using more than one abx at the same time to treat myco and that not everyone responds to the same abx combo. Given the length of time your son has been fighting this, it's possible there's more than one infection - either bacterial or viral. Sometimes chronically ill people then get exposed to other infections and can't mount a strong response, so they end up having layers of illness.

 

If your neurologist is getting faint of heart, you may want to look for either a Pandas doctor, a lyme literate doctor (LLMD), a DAN doctor or an integrative/osteopathic doctor. These seem to be more open minded to chronic infections and long term abx use. If you post what area of the country you're in, people may be able to offer suggestions.

 

As for duration of abx, the most important thing is to protect the gut with lots of probiotics. In lyme treatment, abx are often rotated every few months to reduce the chances of bacterial resistance. I look forward to the day I can get my kids off of abx, but we aren't there yet. My son has been on abx of one type or another for 3 years. I'm not thrilled about it but the alternative is unthinkable right now. But it remains my goal.

[HT's Mom]

Here's an article about myco p that might be helpful

http://www.morgellons-uk.net/?p=467

 

I don't have direct experience, but my understanding is that it sometimes takes using more than one abx at the same time to treat myco and that not everyone responds to the same abx combo. Given the length of time your son has been fighting this, it's possible there's more than one infection - either bacterial or viral. Sometimes chronically ill people then get exposed to other infections and can't mount a strong response, so they end up having layers of illness.

 

If your neurologist is getting faint of heart, you may want to look for either a Pandas doctor, a lyme literate doctor (LLMD), a DAN doctor or an integrative/osteopathic doctor. These seem to be more open minded to chronic infections and long term abx use. If you post what area of the country you're in, people may be able to offer suggestions.

 

As for duration of abx, the most important thing is to protect the gut with lots of probiotics. In lyme treatment, abx are often rotated every few months to reduce the chances of bacterial resistance. I look forward to the day I can get my kids off of abx, but we aren't there yet. My son has been on abx of one type or another for 3 years. I'm not thrilled about it but the alternative is unthinkable right now. But it remains my goal.

 

Wow, LLM, this was timely. Our son just had a positive myco p, and the local doctor wants to use the standard five day z-pack. Dr. T says that's not enough and will get back to us on which antibitotic he wants to use and for how long. This article discusses the need to rotate abx, just like you say they do for lyme. Question for you, though, about probiotics. The article, like many, mention just Lactobacillus acidophillus. Is this enough? What's the deal with this versus floramore or others with 14-50 billion microorganisms, etc. I'm so confused standing in whole foods trying to figure out what to buy.

 

I'm also curious if you know more about the diagnosis of myco p. The article says the standard bloodwork isn't necessarily reliable. Do you know if the other more intensive blood serology they mention is available or doable by standard labs, etc?

 

Thanks.

Edited February 25, 2012 by HT's Mom

[sf_mom]

Our family has recently been hit up a second time with mycoplasma "that I know of". For me, there was very little indication that I had the infection other than some stuffiness first thing in morning. I also have Lyme Disease so its easy for me to harbor these infections. We also see an integrative LLMD and use a combo of antibiotics and herbs to treat the Mycoplasma. I am on Azithro/Doryx (doxy) for antibiotics, Noni/A-Myco for herbs and XClear for nasal spray to specifically treat mycoplasma. My children are on Azithro/Noni/A-Myco and XClear nasal spray. It is my understanding doxy is not indicated for children under 12.

 

I too would recommend seeing an LLMD as they are 'typically' very versed at treating chronic mycoplasma. They will also be able to investigate further the cause of his inability to resolve the infection like viruses, other chronic infections, yeast/fungus, gut issues, etc. You might also want to check if other household members have infection and if its being passed back and forth. We too have been on antibiotics for chronic infection initially PANDAS diagnoses for 2 1/2 years. Our older son's symptoms are in full remission so we are hopeful he'll be off antibiotics within the next year. We have supported his gut in many ways while on antibiotics (tons of probiotics, ketotifen) and has never had a yeast or fungus problem as a result.

 

You might try some XClear nasal spray available at Whole Foods or Pharmica its great at treating anything that is being harbored in nose (even strep). Within two days you should notice a lot of discharge and sneezing and then in about a week hopefully some improvement. It won't completely solve mycoplasma but it should help with whatever is in his nose.

Edited February 25, 2012 by SF Mom

[abbe]

What is noni/amyco

 

 

noni juice?

[sf_mom]

Noni is an herb that we purchase through Nutrametix. We slowly build drops to 15 x 2 daily. We do this under the guidance of our LLMD and start herbs in isolation to anything else (no changes in supplements or antibiotics at the same time as starting herb). The herbs (Noni and A-Myco) are as powerful as any antibiotic and can cause a herxheimer reaction 'making symptoms worse' as die off occurs. I do not think you can purchase A-Mcyo independently on-line but is especially formulated for chronic mycoplasma. Again, the use of these powerful herbs should be guided by NP, DAN or integrative LLMD that is experienced in their use for these chronic infections.

[LNN]

Question for you, though, about probiotics. The article, like many, mention just Lactobacillus acidophillus. Is this enough? What's the deal with this versus floramore or others with 14-50 billion microorganisms, etc. I'm so confused standing in whole foods trying to figure out what to buy.

 

I'm also curious if you know more about the diagnosis of myco p. The article says the standard bloodwork isn't necessarily reliable. Do you know if the other more intensive blood serology they mention is available or doable by standard labs, etc?

 

Thanks.

 

You'll get lots of opinions on probiotics. Some people give a little (10-20 billion CFUs) others give in the hundreds. I think it depends on the individual. If you have a child who's prone to yeast, you might need a lot of probiotics. If not, less might do it for you. It's something you'll just have to experiment with. My daughter used to have yeast problems even before using abx. So she used TruFlora every day for two weeks, and now uses it twice a week. Other days of the week we rotate between Theralac (30 billion) and Sacc Boulardis (5 billion). This seems to work for her. But you just have to tinker. The goal is no behavioral problems, no outward signs of yeast (thrush, vaginal redness, etc) and regular, well formed stools. You can also use yogurt, but the kind with less sugar, or kefir, if your child will drink it (mine would not).

 

As I said, I don't have direct experience with myco p, but my understanding is a z-pak would not be enough. As for testing, my DD had a persistent cough while fighting EBV. I asked about testing but our LLMD said there's no easy way to test for myco ferrentans and the commercial tests for myco p, as Nichols points out, aren't always reliable. He opted instead to increase her zith from 125 mg to 250 mg daily and re-evaluate in 2 months. Since she responds to infections with neuropsych symptoms and she freaks with blood draws, this seemed like a reasonable approach. If she were older, or not allergic to the penicillins, augmentin and cephalosporins, maybe something other than zith would've been more appropriate. But we're somewhat limited in options. She also can't use doxy or minocycline as she's only 7 and you can't use those until all the adult teeth have come in, as those will permanently stain developing teeth.

[LaurenK]

We were just told that IV steroids are great for treatment resistant mycoplasma. There's a couple of studies published on it as well. That might be something to consider if IVIG hasn't done the trick.

[abbe]

Noni is an herb that we purchase through Nutrametix. We slowly build drops to 15 x 2 daily. We do this under the guidance of our LLMD and start herbs in isolation to anything else (no changes in supplements or antibiotics at the same time as starting herb). The herbs (Noni and A-Myco) are as powerful as any antibiotic and can cause a herxheimer reaction 'making symptoms worse' as die off occurs. I do not think you can purchase A-Mcyo independently on-line but is especially formulated for chronic mycoplasma. Again, the use of these powerful herbs should be guided by NP, DAN or integrative LLMD that is experienced in their use for these chronic infections.

 

 

Can you give me product numbers on these products? I found the site but can't find the products. Ideally I want to heal my son as naturally as possible.

 

Thanks

 

abbe

[sf_mom]

Noni: http://www.nutramedix.com/store/pc/viewPrd.asp?idcategory=3&idproduct=33

 

A-Myco:http://www.forresthealth.com/A-Myco.html

 

XClear: http://www.iherb.com/Xlear-Inc-Xclear-Xylitol-Sinus-Nasal-Spray-1-5-fl-oz-45-ml/7047?at=0

 

Again, if you are going to add anyone of the above do it independently of each other. Start out with 1 drop each day (Noni or A-Myco) and work up to 15 drops x 2 daily. Drops are suppose to be in water. We use juice otherwise our 4 year old twins would not drink it. A-Myco is really powerful and expensive and not sure you'll be able to purchase on-line easily. Your child will herx if there is a chronic infection of mycoplasma so be prepared for a worsen of symptoms. We've only gotten up to 8 drops of A-Myco for our twins and are holding until tolerated.

 

If you are interested in helping your child as naturally as possible I would recommend finding a great integrative Dr. that understands the various herbs in combination with antibiotics to treat chronic infections. Some LLMDs are integrative and will be able to assist and some are not. An integrative LLMD will look at the whole picture and help you to investigate things like: heavy metals, detox, mineral and vitamin deficiencies, mold, viruses, etc.

 

Good luck.