Posts posted by msegal7
Wow! I am on the 5th entry and I'm completely blown away. This is the kind of thing I've long thought of writing but never did. I could not have done it so brilliantly! The writer is a gifted story teller. I know what's coming and have lived through a similar and yet I can't wait to get back to reading. Thank you so much for sharing. I'm going to binge read more entries.
I am an addicted reader here on the forum and have posted a few times but mostly dig for information. I have felt a little badly not sharing our successes and the moment I consider posting, the wheels seem to come off the bus. I wanted to post our progress now because my DS 14 is doing so well and I think it might be of help to some of you. I know I read and re read those hopeful success stories during the dark days of PANS.
My DS began treatment 2 years ago and we began to scratch at the layers thinking the sudden onset of tics, ocd, anxiety and sleeplessness was strictly strep related. Wishful thinking.....it has been quite a journey. There are moments it seems there isn't an antibiotic we didn't try. We found Dr. T, then we found another local doctor who is more familiar with Lyme and PANS in general and we were off. It has been a very long road and there have been a lot of ups and down. We tried so many different supplements I could run a vitamin shoppe from my pantry of things that held promise but didn't work or caused a rapid decline. Slowly but surely we began to peel away the onion layers. We used multiple antibiotics and we pulsed tindamax (2 weeks on and 2 weeks off). We tried every anti inflammatory supplement we could find and we really saw improvement. There were flares pretty often and just when I thought we were rounding the corner, he would turn back around and run the other way. It was very up and down.
Sometime, about 3 months ago, I realized that we were missing something. He was at about 85% but I couldn't find a way to get him all the way home. I didn't want to settle for almost back to normal. It didn't feel like antibiotics were going to get us there. I started thinking we were having a serious detox issue and that his gut was causing the problem also. I couldn't figure out what we had missed because it felt we had addressed so many angles.
I read the boards a lot but only squinted through anything on methylation. I was afraid to even consider it....thought my head would explode. Thanks to all of you (LLM) for your brilliant input and critical advice. I had my son on Quercetin, Garlic and anytime I gave him an epsom salt bath he itched for hours. He reacted to B vitamins with increased ticcing. I had to look at methylation. I ordered the 23 and me and sure enough we have some significant mutations that require us to alter the supplements we are giving. The main thing was a CBS mutation. I took him off all things that might cause a problem temporarily while waiting for our Dr. appointment to discuss the results and lo and behold he got to 90%. Then we started slowly adding in herbal remedies following Buhner (thanks Rowingmom.) We did this with the help of an herbalist and we went low and slow. I started to back down some of the western medicine (cefdiner, malarone) and we are now at 95%. I am slowly ramping up the herbal tinctures and watching in amazement as we see the re emergence of our boy.
I wanted to update all of you and give a little hope. There is a way out of all of this and it requires an ability to zig and zag and swear to something only to swear it off the next day. It requires flexibility and diligence and the support of all of the people out there who have been in your shoes and truly understand your pain. I wanted to let you know that we see the light here at the end of the tunnel.....and if it stalls out.....we will do something else.
Hang in there. You are all amazing and your kids are lucky to have you.
First I want to say that I have felt like you feel more times than I care to remember. Hopeful for a time, only to have my hopes dashed by backsliding. I'm sorry you are going through this.
I can tell you that each time this happened, we did not see a resolution in ticcing or other behaviors until we made a protocol change. I don't know why that is, but I have hypothesized that there is some bacteria that is being treated by the current antibiotic and then something else rears it's ugly head. The approach is certainly not one size fits all. It's almost a game of trial and error and the error is so overwhelming that it can actually paralyze you from the effort.
My son, 13, is at about 90% right now and on a myriad of medication. I think that most of the last 10% is a detox issue. We have tried to add several detox agents recently, only to have an increase in symptoms. I realize that this might be a good sign but it is hard for him and for us frankly. We currently use milk thistle, japanese knotweed, magnesium and pro and pre biotics.....tried chlorella and had a major tic resurgence.
When we added Minocycline, things improved quite a bit. We had a great run with biaxin for a while but then it appeared to stop helping. I am not sure why. I am about to embark on some of Buhners anti microbial protocol in an effort to move away from all the antibiotics. I have a feeling that our other 10% may not get cleaned up from traditional meds. Even when we pulse tindamax, we see improvement but not to 100%. We've been treating for 2 years.
I know it is easy to get discouraged. It's a roller coaster of emotions and it's so exhausting. The good news is that so far the flares never bring us back to where we were before diagnosis. There is hope.
Thank you so much for posting. I am not on fb, but would really like to read the full article. Can you email it to me? Please let me know how to proceed. Thanks again.
Is your son on Doxycyline? My son had a very similair and disturbing reaction to a burn on his finger and toe nails while on Doxy.
I have 2 pans kids and a clotting disorder that was not diagnosed until after all 3 of my kids were born. Factor 5 here too. That is an odd coincidence.
writing with an update and curious if any of you have had this experience. My DS12 has been through several different antibiotics which all seem to work miracles for 2 weeks and then tics, anxiety and ocd return. Dr. T agreed to try Minocycline and it was the best result so far but again backsliding at 2 weeks. I don't think it was a herx 2 weeks in but I could be wrong.....added rifampin 4 days ago and tics are going nuts. The poor kids could barely keep his eyes open last night. It is very hard to watch. I started giving ibuprofin again this am to see if that would settle things down. It's hard to send him off to school like that.
I think this crop of symptoms is a herx from the rifampin but I really don't know. The entire thing is such a guessing game. I don't want to stop the rifampin if this is just a herx. He also had fatigue and severe stomach pains including vomiting but that seems to have resolved. Have any of your kids been on this combo and what was the result. I think we are dealing with lyme and myco p along with strep....I haven't been able to sleep and am worried sick all the time that I am headed aimlessly down the wrong road.
I increased the probiotics but he reacts to those as well so we have to be careful. Any input would be greatly appreciated. Also, we are working with Dr. T who is compassionate and has frankly saved us in many ways but I feel we need a LLMD on board. I have no idea who to contact. We are in Michigan and I can't find anyone around here. Suggestions very welcome. Thank you all for your help.
I've posted here before but I'm having some trouble figuring out what to do with my DS12. He is being treated for chronic Mycoplasma by Dr. T. We have initial remarkable success after a couple of days on each new antibiotic but after 2 weeks we have a slide. His primary symptoms are Tics, anxiety and OCD. We started Minocycline 2 weeks ago and he was back to his pre pandas self in 48 hours. I was holding my breath because I've seen this before....the last 2 days I noticed he is slipping. I know many talk about a saw tooth recovery but I can't help thinking he needs another antibiotic in combination with mino. He is taking 100 mg 2x's a day. Have any of you had an experience that involved great success and then after a short time slipping back? Have any of you been on Minocycline with another antibiotic that seemed to help? I would really like to try A-Myco but can't find a way to purchase without a LLMD and we live in Michigan where there doesn't seem to be a good doctor for this.
Any information would be greatly appreciated.
Thanks so much
We are seeing pretty good results on the azith. He is feeling more like himself and if I look at the big picture rather than day by day, he is making progress. It is the sawtoothed recovery that many speak of and on a daily basis it's hard to really evaluate. Dr. T wants to switch him to Minocycline and I am willing to try it but I am afraid to take him off the azith right now. I think we will hold steady for a minute and see how he responds. It is my understanding that most kids do better on a "cocktail" of antibiotics when fighting myco pans. I haven't yet tried that but am certainly open to it. I think it makes sense to get another doctor on board and am considering calling Dr. B today. Dr. T is amazing but I can't help but think 2 heads are better than one.
I hope you continue to see good results with your new combo. It is really a long and winding road to recovery. I feel tired already.
So grateful for the input. I wonder if you could tell me your regimen on those particular drugs? Did your child have tics in addition to OCD and anxiety? Have you seen a return to baseline on that particular cocktail? And lastly, how long have you been giving this combo and how long do you expect to continue?
I am learning as I go here. Thanks for all your help.
I am writing about a newly diagnosed case of PANS. I have been reading on these websites obsessively for the last 2 months and the information has been a ray of sunshine in a horrible nightmare. My son (12) was a happy, well adjusted, sweet, easy going boy when I noticed sudden onset of tics, OCD, anxiety, insomnia and "hearing voices". The symptoms began to ramp up until a friend had me read Saving Sammy. I was shocked because this was something nobody had mentioned. I started him on 1000mg augmentin bid and he responded instantly. He was back to his old self in 48 hours.....all symptoms gone. Well I admit that I was pretty proud of myself. My ex husband is a physician and he called in the antibiotic and lo and behold he was cured! Yea right.....the symptoms stayed away for a couple weeks,at most, and then came back with a vengance. Thankfully, in the interim I found Dr. T. He ordered labs and while we waited he put him on 250 azith with 1,000 augmentin. Again, 48 hours later we were back to normal.....short lived again. The labs came back showing Mycoplasma rather than strep and my 17 year old daughter seems to be a trigger. We are now treating her with azith and my son is on 250 azith twice a day. Today and yesterday were very good days. He is not 100 percent but he is doing very well and we are temporarily relieved. I am now afraid to get too comfortable as I have been burned. I am in touch with Dr. T who is incredible and I feel supported by him but this website has saved my sanity. If I can't sleep because I am worried, I come on and read and feel better. The information is just amazing and I know there are so many of us relying on eachother out there. I just wanted to say that I appreciate all the information. In an effort to give back I wanted to share what worked and didn't for us.
My son had a very bad reaction to culturelle. His tics were at their worst when he was taking that. I know people say it is a yeast die off but it was unbearable to him. He doesn't complain of stomach pain so far. I took him off probiotics with bacteria and added yeast based at bedtime in small doses (5 billion for now)sach b. I would consider increasing that but not right now because he is holding steady. We are leaving him on this dose of azith for a while to see how he does and perhaps we will add doxycycline down the road as it seems to be the drug of choice for Mycoplasma PANS. I want to list what is taking because I always thought those were helpful entries. Obviously, each kid is different and so much of this is trial and error but I found the information helpful.
250 azith 2x's a day
2 motrin in the am (for now)
1 folic acid
juice plus in am and pm (red in am and green in pm) this is said to be immuno boosting....who knows.
2 quercetin in the am and 2 in the pm (seems to take the edge off the allergies as a natural antihistamine and is also anti inflammatory)
1 multi vitamin gummy
1 sach b at bedtime
We are holding our breath here and hoping that we continue to see good results. I am always interested in feedback and advice and will continue to keep you posted on his progress. Feel free to ask any questions.
Take a little break....and give some (fun) feedback
in PANS / PANDAS (Lyme included)
Is there more? I finished what is here and I'm so curious what happened next.