Jump to content
ACN Latitudes Forums

msegal7

Members
  • Content Count

    12
  • Joined

  • Last visited

  • Days Won

    3

Reputation Activity

  1. Like
    msegal7 got a reaction from MissionMama in Take a little break....and give some (fun) feedback   
    Is there more? I finished what is here and I'm so curious what happened next.
  2. Like
    msegal7 got a reaction from MissionMama in Take a little break....and give some (fun) feedback   
    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.
  3. Like
    msegal7 got a reaction from AliceInWonderland in good news PANS /PANDAS LYME   
    Hi all,
    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.
     
  4. Like
    msegal7 got a reaction from DebC in good news PANS /PANDAS LYME   
    Hi all,
    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.
     
  5. Like
    msegal7 got a reaction from jph in good news PANS /PANDAS LYME   
    Hi all,
    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.
     
  6. Like
    msegal7 got a reaction from lovemylittleguy in good news PANS /PANDAS LYME   
    Hi all,
    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.
     
  7. Like
    msegal7 got a reaction from philamom in good news PANS /PANDAS LYME   
    Hi all,
    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.
     
  8. Like
    msegal7 got a reaction from SSS in good news PANS /PANDAS LYME   
    Hi all,
    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.
     
  9. Like
    msegal7 got a reaction from rowingmom in I don't know what's going on - treatment plan?   
    Hi,
    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.
  10. Like
    msegal7 reacted to rowingmom in Mycoplasma treatment question   
    Rifampin is used by many LLMDs to treat bartonella, which we think was the major cause of DD11's PANS symptoms. An increase in herxing with rifampin could indicate bartonella infection.
     
    You have not mentioned whether or not your son presents with other symptoms that could indicate bartonella: long bone pain, pick-like headache, night-time fever, stomach pain and IBS type symptoms as well. DD11 was suffering from all of these as well as PANDAS symptoms (see my signature line below). It has taken us 2 years of combination abx treatment to bring her IgG bartonella titers from 120 to 80 (which is still positive). Her symptoms, including motor/vocal ticcing, have resolved at this time.
     
    Don't use rifampin on it's own, only in combination with other abx. The chance of developing resistance is greatly increased when it is used as monotherapy.
  11. Like
    msegal7 reacted to MamaOnAMission in Is this true   
    what would they use to treat lyme in 13 year old. would it be minocycline or doxycycline?
  12. Like
    msegal7 reacted to landamom in Allergens weaken the immune system?   
    I woke up this morning wondering the same thing! The pollen has started here this week from the pine trees and I am itching like crazy and my eyes are swelling up. A the same time, my DDs chronic cough has flared up this week. It started last April, same time but then subsided towards the end of the summer. We assumed it was a tic, as tics are her main PANS symptoms. But now I'm wondering if allergies can cause flares even before any kind of infection is present? Also, does anyone know if allergy blood tests are accurate? She had one done last year and nothing showed up.
  13. Like
    msegal7 reacted to SSS in detox does not help...what do you do?   
    Yes, 99% sure they are indeed the Bartonella stripes, look exactly like it,
    brand new, this is her very first antibiotic combo for Bartonella
    specifically- we had only been on some B. White A-Bart drops previously,
    and had only gotten to 5 drops 2x a day.
  14. Like
    msegal7 reacted to Hopeny in Prom   
    yay!
  15. Like
    msegal7 reacted to Dedee in What in the world is going on NOW?   
    Well the doctor called back today. She is stopping the amoxicillin and starting dd on Zithromax / Rifampin combination. If this isn't enough she will consider adding a third but she didn't say what it would be. We will start with the change slow as we usually do to avoid a huge herx. I will start the Zith first and add the Rifampin in a week or so. I really hopes this helps. We used Zith before but not with much luck. Don't think we ever used it with Rifampin though. Anyone out there have luck with this combo alone?
     
    Dedee
  16. Like
    msegal7 reacted to dcmom in IVIG for CVID   
    Hi Big Mighty-
     
    Well first- YAY for your son- that he is doing well!!!
     
    IMHO PANDAS needs to be treated based on symptoms alone. If a child is doing well- (IMHO) DO NOTHING! Do not even change your laundry detergent! Stay the course, and enjoy life.
     
    If/ when things go south again is the time to treat. IMHO each episode should be treated quickly, and in order of least risky to more risky treatments. This means- within 24 hours of seeing pandas again, start with advil and increased or switched antibiotics, then if needed proceed to steroids, and then if needed proceed to IVIG/ PEX.
     
    Unless your son is sick very frequently (CVID) or is in a pandas flare, I would not even consider an IVIG.
     
    My older daughter had IGG in the 600's also. Our doc took a wait and see approach, we tested about 4 mos later, and she is now back within the normal range. I think pandas can completely mess up most test results, not to mention that the immune system has gone haywire. I think it is prudent to take a "wait and see" stance, and retest, and retest with most questionable results.
     
    I personally would not consider treatment for CVID unless there is chronic or constant illness, there is chronic pandas flare ups, or if the immune numbers remain alarmingly low (not borderline) for a year.
     
    I do agree with the doc on one thing, however. I think the best case scenario would be for you to work on slowly weaning your son down to a prophylactic dose of augmentin after a six month remission. Some kids seem to be dependent on antibiotics (then by all means- keep them on) but some do not (mine) and I think it is best to figure out what situation you are in.
     
    Best of luck to you- enjoy the good days to the fullest!
  17. Like
    msegal7 reacted to sf_mom in MycoP IgG titer   
    Our older son is on Azithro, Noni (herb), A-Myco (herb) and XClear nasal spray for mycoplasma. I am on Azithro, Doxy, Noni (herb), A-Myco (herb) and XClear nasal spray for mycoplasma. We are also being treated for other chronic TBI infections while being treated for mycoplasma. Doxy is not indicated for children under 12.
     
    I had just a little stuffiness first thing in the morning. No other symptoms of mycoplasma, Older son used to suffer from predominately TICS, he is currently in full remission of TICs/OCD. He had a lot going on so its difficult to say which infection was causing the TICs. From our perspective, it was the perfect storm of many chronic issues.
     
    Good Luck
×
×
  • Create New...