michelew

I live in Florida. I, too, thought my son had PITAND due to Myco P. My son has high IGG & IGM for Myco P., and we've been treating him since October of 2011. His Myco P. numbers have been coming down; however, his symptoms have shown very little improvement. We are currently in the process of pursuing the Lyme route, as well. We had him tested for Lyme through Quest Labs, which indicated "reactive" bands for Lyme. We're now considering trying IV antibiotics for the Lyme, in addition to continuing to treat the Myco P. My son has been receiving treatment for the Myco P. from his neurologist. She is extremely open to trying anything to try and get him well, which has been wonderful. The only problem is, she has never treated anyone with the symptoms my son has, so we have been pretty much following Garth Nicolson's protocol for fighting Myco P, and now we're in the process of trying to find an LLMD to help us decide what to do next. Some of the LLMD's are willing to do phone consults, so I'm hoping we'll be able to find someone willing to direct my son's treatment through his neurologist. She has been such a blessing, and refuses to give up on my son. Where do you live? I'd be happy to share more of my story with you, if you're interested. You can send me a PM.

Hello, Everyone. I'm very new to this lyme thing, so I'm feeling extremely overwhelmed and confused. What I do know is the fact that my two sons, who have been experiencing neurological problems for many years, just recently tested negative for Lyme, or so the Quest Labs report indicated. From what I understand, Quest is not very accurate, and since my sons were both reactive for bands 23 & 41, I'm now feeling, that based on their symptoms, they probably do have lyme. We have gone to North Carolina in the mountains every summer since they were very young, & they both have had ticks on them on many occasions. In addition, they both have tested positive for Mycoplasma Pneuomonia, which I have also learned is a very common co-infection with Lyme. I'm feeling very desperate, as my 12 year old son has been experiencing EXTREME neuropsychiatric symptoms for over a year. We first thought he had PITAND, because of the Myco P infection, but we've been treating the Myco with fairly high dose antibiotics for over 6 months, and are not seeing any improvement. This is what is making me think we're dealing with something else. In addition to the psychiatric issues, an MRI revealed white matter lesions on his brain & an eye exam revealed optic neuritis (enlarged optic nerve). None of the doctors had an explanation for these abnormalities, but simply said that maybe he was just born with these conditions. I have since learned that these two symptoms are also very indicative of neuroborreliosis (Neuro Lyme). Unfortunately, I live in the state of Florida, and there are only about two doctors in the entire state that are LLMD's, and they do not typically treat children. My husband said that he just wants to take our sons to a hospital and get them treated for Lyme, now that we're both convinced this is what they have. I told my husband that I did not think that the mainstream hospitals and/or infectious disease doctors are capable of treating Lyme properly. Am I correct in this assumption, or are there some hospitals known for treating late stage lyme accurately? I thought that I remembered reading that there are two different philosophies when treating Lyme & that the LLMD's are the ones who treat more aggresively and longer term? Am I right? Any input would be greatly appreciated! Michele

Hello. This is my first time posting on the Lyme Board. My son was diagnosed with PITAND (Myco P.) triggered in Oct. 2011. Since that time, we have been treating him with 200 mg of Doxycycline & 500 mg of Azithromycin, then switched out the Azithromycin (seemed to stop working) for Biaxin. So now he's on 200 mg. of Doxy & 625 mg. of Biaxin. His primary symptoms are neurological (extreme OCD, anorexia, angry all of the time, extreme sensitivity to sound, does not want to leave the house, etc.) He once was a perfectly, healthy typical boy, until about a year and a half ago, & is now completely nonfunctional. He has shown very slight improvements since we started him on the antibiotics, but he is no where near the kid he once was. Now I'm wondering if he may have Lyme Disease, and if this is the case, should we be treating him more aggressively with antibiotics. We had him tested for Lyme through Quest Labs, and we were told his test was negative for Lyme. I was okay with this, until I read that Quest is very unreliable. Also, my son's test did shown band 23 IGM to be reactive (IGG was negative) & also band 41 IGG to be reactive (IGM was negative). I have noticed that it seems as though the Lyme doctors tend to prescribe MUCH higher doses of the abx with a Lyme DX, in particular when they have neurological symptoms like my son. I am interested in learning what type of combo abx you or your children are taking & at was dose, in particular if you and/or your child is experiencing the neurological components of the disease. If you could also share age & size of your child, this would be very helpful. Any input would be greatly appreciated. Michele

My son has been on Doxycycline (200mg/day)for almost 6 mos. After two months of being on Doxy, we added Azithromycin (500mg/daily). He did well on this combo for a short while, but then started to backslide & his IGM numbers weren't really changing. As a result, we swapped out the Azithromycin for Biaxin about 3 weeks ago, and now his IGM numbers are beginning to fall again. Clinically, we haven't seen much improvement, but we were happy to see that his IGM number went down more than 500 points in less than two weeks, after switching to Biaxin. I'm now wondering if we should add Flagyl into the mix, as I have heard that this kills the cyst form of Mycoplasma. I think that I have seen on this forum that some of the kids being treated for Myco actually use something called Tindamax. Is this the same type of abx as Flagyl? Also, I think I recall seeing that it is often pulsed on weekends, as opposed to taking it daily. If you are being treated for Myco, and are on combo abx, I would be interested in hearing what combos you're on & also what dosing. I am particularly interested in hearing from those of you who are taking Tindamax and/or Flayl, and the what dosing schedule you are following. Thanks!

Colleen-I learned that it's excellent for the liver, thanks to the smart Mommas on this forum. This is important, since we know that our kids' livers are most likely being taxed with all of the antibiotics they're taking. Michele

Thanks, Mayzoo. I read some of the articles you suggested, and have decided not to try. I did read that it can interact with abx, and can cause unsafe levels in the bloodstream. Thanks for the info. Michele :-)

Has anyone ever heard of or tried Wobenzym N? I went to my health store today, and the nutritionist told me that this is an excellent supplement for anyone suffering from autoimmune diseases. She said that it helps tremendously with inflammation. Any input would be greatly appreciated. :-) Thanks, Michele

I bought two bottles of milk thistle (600 mg capsules), after having learned from all of you, how beneficial it is for the liver. I've been hesitant to use it,as I'm not sure how much, and how often I should give it to my son. He has been on heavy antibiotics for going on 6 months, and we've recently started giving him ibuprofen, so I would like to give him a supplement to help his liver, but I wasn't sure how much, and when I should give it to him (should I give it 2 hours after the abx, for example?). I have read that it can sometimes interfere with the effectiveness of certain medications, so I want to make sure it doesn't stop the antibiotics & ibuprofen from doing their jobs. Any advice would be greatly appreciated. Thanks! Michele

Hi, All. I know that I have seen some discussions regarding Glutamate and GABA, and that some of you have your children on some supplements for these two neurotransmitters. I was just wondering if there is a way to test to see whether our kids could possibly have too high or too low of levels. I was reading about how dangerous having too high of levels of glutamate can be, and that having too much can actually cause brain damage by causing brain cells to die (something called excitotoxicity). This really scared me, and made me think that if this is a possibility, then I'd better look into this. My son seems as though he might have high levels of glutamate, based on his symptoms, but how does one know, and what can be done about it if he does? It seems as though having too much glutamate, can sometimes have the same side effects as having too little. The symptoms seems to overlap. Also, he responded terribly to two SSRI's we tried (prior to his PANDAS DX) and also to Ativan (had a complete opposite reaction of what they're supposed to do.) I was wondering if being on an SSRI could actually change glutamate levels, because the psych meds DEFINITELY added to our downward spiral. As a result, I'm terrified to try another psych med, even though my son is still so extremely ill. Thanks for any information. Michele

Before we even knew our son had PANDAS/PITAND, he was experiencing extreme sensitivity to light. We were so concerned, I took him to an opthamologist for a complete eye exam. We experienced the same thing in the car, in the kitchen, etc. He now is extremely sensitive to sounds. For example, when I'm unloading the dishwasher, if I accidentally "clang" dishes together, or make noise with the untensils, this really bothers him. The senses are definitely affected by this disorder, just like with autistic children.

Hi, Everyone. I took my son to his neurologist today. She said she would be open to trying steroids as a possible treatment option, but she said she would be interested to know what has been tried and successful with PANDAS kids in the past. I know a few of you responded to a recent post of mine, but I was wondering if you could please elaborate on exactly what your doctor's dosing was, the name of the steroid, the duration (one time or did it require several treatments), and whether or not you did a burst, taper or IV. Also, if you could please share your doctors' names, and the type of doctor (ie: neurologist, immunologist, etc.), I would greatly appreciate it. My son's doctor is just very interested in knowing what exactly has worked for others with the same condition. I feel fortunate that she is willing to try just about anything I ask, but unfortunately she has never treated a PANDAS kid, so we both feel as though we're treading unknown waters (so to speak). Also, could you please share any adverse side effects you experienced, before you saw improvement. I just want to know what we're getting ourselves into. Thanks! ;-0) Michele

Lauren K-Could you please share with me your son's age, and size, and also what steroid was used. Thanks! Michele

Hi,Cobbie. My son has been on high dose abx for 5 mos., and we've been using Ultimate Flora Critical Care 50 billion for about 2 mos. I was buying BioK, but that was very pricey. Any way, the critical care seems to be doing a great job. My son has no stomach issues, and makes a solid stool everyday. I order these from a website called Lucky Vitamins. I pay extra to have it shipped in two days, as it needs to be on ice, and kept in the fridge. I had read that this was rated the best of all probiotics on a website, so this is why I decided to try it. Best of luck! :-) PS-How is your son doing with the steroids? I'm really interested in knowing, as we're considering steroids for my son.

dcmom-I would like to copy eljomom's inquiry, and would also love to have any additional info regarding dosing, side effects, etc. Thanks!

Hello Everyone. My son has been very sick for over a year. We have tried abx & IVIG, and we're still suffering with all major symptoms. We started to notice some improvements about one month ago, but unfortunately, now we seem to be in a backslide. My husband and I are considering possibly trying steroids, and would be interested to hear about all of your experiences (good & bad). It just seems as though steroids would make sense, considering that we're most likely dealing with inflammation. This is why it seems somewhat surprising that these aren't prescribed more often for our PANDAS/PITAND kids. Also, when my son first started coming down with his symptoms, the doctors thought that he may have had Hoshimoto's Encephalitis (which was later ruled out based on test results) but the doctors had said that the treatment would involve high dose steroids, and that the prognosis was good with this treatment. I'm just wondering why steroids would be used for Encephalitis but not for PANDAS/PITAND/PANS? Thanks for your input! Michele

Hi There. I was just wanting to f/u to see how your son is doing. My son has been so sick for over a year. We've tried abx & IVIG, but we're still dealing with severe symptoms. We're now considering trying steroids, so I'd be interested to hear if you have seen any improvements. Thanks so much! Michele

Hi, Cobbie. This does sound promising. You are lucky that you have found doctors willing to think outside of the box, & willing to try a combo of abx with steroids. I'm thinking that this may be what my son needs. My son is a very severe case, and has been suffering for over a year. We just learned of PANDAS/PITAND last October, and immediately started him on abx, as a Mycoplasma Infection was confirmed. At first he was only on Doxycycline, then 3 weeks after starting the Doxy, he underwent an IVIG, and then about one month later we added Azithromycin to see if this combination abx therapy would work. After about a month after adding the Azithromycin (500 mg/daily)...we started to notice some improvements. We're still not sure if the reason why he improved some was because of the Azithromycin, or maybe the IVIG had finally started to kick in, or maybe the Doxy was finally making a difference. At any rate, there's no way of knowing for sure. Unfortunately, about one month ago, almost all of the gains he had made, started to slip away. Now we're at a crossroads and wondering what to try next. We're thinking that maybe it's time to switch antibiotics, but I also like the idea of trying a steroid taper. Since inflammation is presumably what it going on, trying a steroid seems to make sense. The reason we haven't pursued steroids, is because at the end of November, we actually took our son to see Dr. Murphy, PANDAS expert here in Florda, and she acted like this would be very risky. She told us that we would have to have an entire team of doctors ready to jump into action, as she said that steroids can sometimes cause PANDAS kids to become even more psychotic. I'm sorry if it seems as though I'm rambling. I was just really interested in learning about your son's protocol. I like how they are using three different abx, and also trying the steroids. How is he doing today? Are you continuing to see improvements. Also, if you would not mind, could you please share with me the dosing of his abx, & also the dose and duration of his steroid taper. We have an appt. with my son's Neurologist on Monday, and I would like to discuss possibly getting more aggressive with his treatment. I hope your son is still improving, and that the one bad day was just a "blip" in his recovery process. Any information you can share would be greatly appreciated. Thanks, Michele

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. :-)