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Everything posted by Megan

  1. Thanks so much! That helps a lot. By the way, if your son has lyme....we have done many protocols (abx with Dr. J in CT, then Cowden protocol, which was better than abx, and finally the Dr. K (seattle) lyme cocktail, which works more effectively and faster than anything. Dr. K is a genius. You can find a practitioner that follows his protocols and they can help with PANS as well.
  2. Hi all, My son has improved a lot with parasite treatment (I will post a more detailed update later on both him and my daughter who are much improved through natural treatments) but recently came down with a terrible sore throat and a rash on his cheeks and chest. I did a throat swab and it was clearly positive for strep. I have a month of keflex on the shelf that I never had to use for my daughter and am going to start it since the infection is so bad. Can you all share what dose of keflex your child has been on for active strep throat infections and how many times it was given per day? My daughter was given it 4 times/day but I wonder if 3 times/day would work? I have read that it can even be given twice/day. My son is 67 lbs. Thanks, Megan
  3. I would start with a check for lyme, as it can cause tics. You should try to find a LLMD (lyme literate MD). You can research a bit on www.lymenet.org go to the flash discussion and you can post to see what others think. It is the best lyme site in my opinion. Do you have any other symptoms such as fatigue or migrating muscle pains or headaches or sleep issues? It can be subtle.
  4. Dedee - thanks so much for the great info. So glad to hear it has helped your daughter! How much did you start with per day in the beginning? Thanks, Megan
  5. I read some positive info on camel's milk and how it can heal the gut and the immune system. Has anyone tried it? If so, did it help and where did you get it? Thanks!
  6. Thank so much - I will look into that Enhansa product. Have you tried it or know of others who have? Can ibuprofen actually end a flare without using abx if the flare is caused by a virus? My son's tourrettes has gradually worsened over the past 3 months as he became sicker and sicker with what we think is mono from CMV. Wondering if I should try to keep him on the ibuprofen or if it will evenutally stop working if that is what helped us in the beginning. My daughter has had virus flares for the past two years - I only now realize it must have been PANDAS or PANS. She would have good days between but now the good days don't seem to be happening much. She has good periods in the day but the tantrums happen almost every night. I wonder if ibuprogen or the enhansa might help her. Her stomach is sensitive to abx after having them for so long when we first treated lyme years aso. Thanks.
  7. dcmom - how did you get a handle on it? Would love to hear protocols that have helped.
  8. THanks all so much for your replies. I will respond again later when I have more time but wanted to ask how long your child's mono virus lasted? My son has had it for 3 months now. Which antivirals do you find helpful? Do you need to use them full time? Do you give abx too if the cause is viral? Philamom - would love the name of the ENT! Also - we saw some improvement recently with parasite treatment in my son. He was much worse when on the treatment, then made improvements after. Has anyone experienced this? THanks!
  9. Hi, I gave my son ibuprofen for a fever over the weekend and the next day he was so much better - his tourrettes was much less. I am wondering if this was just coincidence because I have read it can help. If it helps, how long does it last for you? Do you give it daily? If it does reduce inflammation in the brain, are there natural alternatives that can work? Has anyone looked into this? Thanks so much.
  10. I wonder if there are many of you whose child had gradual onset of symptoms and think their case may be from PANS rather than PANDAS? My son has been battling a bad viral infection for the past 3 months which we think is mono after having very high titers of CMV and HHV-6. He is still dizzy, nauseous, weak, fatigued and cannot focus. He also developed tourettes type behaviors and is extremely emtional. When he is upset, he says terrible violent things and when he is not he says inappropriate things like, "poo" over and over. He is also not listening as well as he used to and refuses to do what he is told more often. He did have scarlet fever last year so he has also had strep in the past but not many positive throat swabs and blood work is normal for ASO. We have been getting him to school about 3 days/week but he is a mess when he gets home. I am considering trying home-bound for a month or two to see if he heals faster. I am hoping that as he recovers from the mono, his tourettes will go away. Has anyone had this experience? If the cause is viral, has anyone taken antiviral meds with some success? Thanks.
  11. I have two children I feel have PANS or PANDAS. My DD (6) primarily has severe, violent tantrums when she doesn't get what she wants and my son (8) has tourrettes behaviors saying violent things especially when he is agitated like, "I am going to kill you" or "I hate my family". They have other symptoms as well but these are the most prominent. My son is battling a bad case of a mono-like virus which I feel brought this on. I am waiting to get in to see Dr. Latimer next month but do not feel comfortable with IVIG for my kids due to their past history of lyme/coinfections and my concern that they could be reinfected through the blood supply. Does anyone know if she recommends PEX? Which doctors recommend this treatment now? I know it is much less common than IVIG. Thanks, Megan
  12. Beeskneesmommy- thanks for your reply. I have been calling about Dr. Elia and they still don't have a date. Yes, we are on the mainline. I may call you sometime soon. My daughter's tantrums are worsening lately. Thanks, Megan
  13. Hi all, I'm still waiting to get my child into DR. L and DR. E but was wondering whether it is essential to get the symptoms down prior to trying either IVIG or PEX? My daughter is reallly struggling with tantrums and now multiple personalities. It normally happens in the evening but can be set off during the day if she doesn't get what she wants. Two different antibiotics didn't help much and now she has stomach pain so I am worried she cannot tolerate more abx. If your child had symptoms going into these treatments, did the treatments work? Thanks so much, Megan
  14. LLM- thanks for the lysine tip....she has been taking it for a month and actually her ANA was normal this past week which, according to our practitioner, is a sign that the EBV is going down. It's nice to have the confirmation from you that it helped. Thanks all for the info about the tantrums....I was actually wondering if it was some sort of ritual because it normally happens in the evening as we try to get her up to bed. At around 7 pm, we try to head it off by letting her watch a movie on the DVD player in her bed. We thought we had done so last night be she wasn't tired enough when it ended and she came back downstairs and started to run around acting like she was a horse and grabbing her brothers stuffed animals and harassing him. I had to physically carry her upstairs to her room screaming, which woke up her other brother, because she was messing up the house. When I carry her she claims I am hurting her because her skin is so sensitive from the neuro issues. Once the tantrum ends, she has to spit a lot of mucous. I feel so sad right now because her stomach is hurting too so I feel helpless...I feel the abx are too hard on her stomach. Thanks, Megan
  15. Thanks for all of your replies. Now my son is acting terribly and saying violent things - he didn't go to school today either. He must have strep again, along with parasites. It is crazy in our house. Very depressing. Both my kids have stomachaches and I don't think can tolerate the abx. SmartyJones - we have tried some homeopathy through one of our doctors but didn't have much success. I do want to look into it again though. I'm curious, where is your intergrative MD located? Can you give me more info about the nosode that you had such good results with? Did it bring down a big infection or did you have to knock it down with abx first? Yes, the two testing results don't always totally match but most often do. I can get more info by going to both though. My practitioner who does EDS testing says that most myco is resistant to abx, but she uses a form of rife therapy which is remedies imprinted with frequencies. I have a rife machine myself as well. JuliaFaith - thanks for the info about the marcons....will have that checked. Where is your ND who treats PANDAS? junkyardjean - They hydrotherapy sounds great. I couldn't find a practitioner near me but will keep looking. Thanks again for all of your help during this very difficult time. Megan
  16. Christianmom, Thanks so much for your detailed reply. My three kids are all on the lyme cocktail as well. And my son just started the acytyl glutathione and we are waiting for the B 12 injections to be ready. I know all of the things you mentioned except the TGF-B1....what is that? How old is your son? Is he in school? I am just so overwhelmed because my 8 year old son is having similar issues as my daughter....both home today. My son just did ivermectin through Dr. S over a week ago and it helped him temporarily but now he is back to square one. And his stomach is terrible now and his tourrettes is back. It is very difficult. Thanks again for all of the info. Best, Megan
  17. LLM, Thanks for the idea about the biofilms - we do give her grapefruit seed extract as part of her lyme treatment. I may add serrapeptase as I think that is a good biofilm breaker and we have used it in the past. Junkyardjean - thank you for your post. How nice you have been able to help your daughter naturally. I hope to get to that point. Did you need the abx to get rid of the strep initially? I presume your naturopath is in Canada? I have not heard of hydrotherapy...what is that? Thanks, Megan
  18. THanks LLM. I know that these symptoms could be lyme symptoms, however, she did have her typical lyme symmptoms this summer when she was reinfected. She is on the Dr. Klinghardt lyme cocktail which is very effective for lyme and I have seen "her" typical lyme/coinfection symptoms disappear over the past few months. She is cheerful during the day and does not have a herx reaction after taking her lyme cocktail like she did two months ago. I have been researching lyme for years since my entire family became sick. Have been to many of the top LLMD's and our best progress was through natural treatments after doing 2 years of abx through Dr. J in CT. The abx worked for the first year and then stopped working and my children plataued but were not healed. Then I discovered natural therapies and actually healed my children on those until they became reinfected with lyme many times this year as well as parasites from our well water going bad and then passing strep back and forth and everything has gone down hill. We use electrodermal screening from one practitioner and muscle testing from another to see which infections are present. That is another reason why I feel these symptoms are not from lyme. Our EDS practitioner feels that EBV and mycoplasma are causing a lot of her symptoms right now. We also go to a more mainstream doc to get blood testing done. Thanks for your help. Megan
  19. Thanks mdmom, yes, we are well versed in lyme and she has had many reinfections. She is on lyme treatment and we don't think her current symptoms are related to lyme. Her ANA is elevated and I wonder if she has EBV. We are awaiting more blood work which hopefully will show something. KathyN - how did the Rheumatologist diagnose your son? Was there a blood test or was it based on symptoms? That's wonderful the joint pain went away. Dedee - thanks for your thoughts - did you ever try zithromax for your daughter and found it didn't work but the biaxin did?
  20. Christianmom, Thank you for your post. Actually I bring all of my children to Dr. Schwartz! We live outside of Philly and have had lyme disease so that's why we went to him initially. He has found strep in my daughter when no one else can (except our other pracitioner who does electrodermal screening). He actually recommended zithromax again for my daughter so we just started it up again but I am concerned that it will not work as it did not before. He says we need to stay on it for a couple of months. He is not seeing lyme or mycoplasma in my daughter now but our EDS practitioner sees mycoplasma and EBV which could be the cause of her joint pain. Have you met with any PANDAS doctors or do you feel that your son's symptoms are improving so there is no need? Do you mind sharing which antibiotic herbs you are using? We tried silver and goldenseal for a while but it couldn't knock it out. Thanks so much, Megan
  21. My 6 year old daughter has such severe joint pain that she cannot walk some days. She also has severe tantrums every night and neuro issues (blurred vision, hearing and skin sensitivity). She has a constant sore throat and headache and often has to spit mucous in the sink because I suspect there is an infection deep in her throat, even when on zithromax or keflex. Doctors say her throat looks fine. She has not been to school in a month. Has anyone had a similar presentation? We are waiting to get into see a PANDAS expert. Thanks for any input. Megan
  22. We are waiting to get my 6 year old daughter in to see Dr. L in MD and Dr. E in DE. In the meantime, we have a family doctor who has given us two different antibiotics to try. 3 weeks of Zithromax did not stop my daughter's sore throat and nightly tantrums. We then tried 8 days of keflex with helped her sore throat for the first couple of days and then it came back on the 4th day of the med. She had to stop the keflex due to severe itching on the 8th day. I am concerned that the antiobiotics will not be able to knock out the infection. Has anyone had success with natural treatments? My daughter clearly has a throat infection but doctors don't see anything wrong when they look in her throat. But she is often spitting mucous because there is so much of it. She is not congested but I feel that there is a big infection deep down in her throat which is not visible. She continues to have very violent tantrums and personality changes every night. She has heachaches, stomachaches, blurred vision and hearing and skin sensitivity, which are all more pronounced during the tantrums. She has never had an elevated ASO or DNASE b. Thanks, Megan
  23. S&S - thanks- yes, definitely treated the coinfections. I know bartonella can cause behavior issues and has in the past for us but we have seen the grumpiness from bart go down recently as we have aggressively treated bartonella, babesia, ehrlichia and lyme. These tantrums are nothing like we have ever seen and have not improved with the lyme treatment, nor has the vision and hearing issues. They have gotten worse despite the lyme treatment. She also has some kind of infection in her throat despite the zithromax because she often has to spit frothy mucus and says it feels like stuff is stuck in there. It is possible that the lyme and coinfections could be causing the vision and hearing issues but my hunch is that it is PANDAS.
  24. Thank you all for your replies. It helps to hear everyone's stories although I realize that we are all different. But perhaps one treatment from each story may help my children. I feel it is important to gather all of the info and sift through it. My children have been battling chronic lyme/coinfections for years and have beaten it through my resaearch into various treatments until this summer when they were reinfected several times from mosquitos. I think that set us up for the pandas/pans to appear, along with battling strep all winter. I feel that their lyme infections are down so that's why I'm wondering about the vision and hearing issues. It really helps to hear other experiences. Thanks nicklemama for the info about the tantrums and the relief from the neuro issues from treatment. Best, Megan
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