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Everything posted by laure

  1. Rothman was an amazing place and Dr. Rahman is very compassionate, creative, and knowledgeable. I learned a lot that has really helped me. My daughter was still too sick to really profit from the treatment, but he was able to identify this. Still what I learned was most beneficial. It was a nice distraction to have homework to do in between sessions or at night. The area and beaches are lovely, so not a bad place to visit! The Ronald McDonald house is an amazing place to stay just a block away. They have coupons and free or reduced entry to so many venues, from the aquarium to the art museum, bikes for riding, etc. There is a lot of time between sessions to fill with peaceful, fun things to do.
  2. We have been using LDA and LDI for two and one-half years now. Our daughter is at 100% both physically and emotionally/mentally. We will continue with the injections until her immune system is at 100%, and it is slowly recovering. Her Natural Killer cells were in the single digits when we began LDI/LDA after 5 years of antibiotics/antimalarials/herbals, etc. I am not sure if the 5 years of very aggressive treatment set her up for success with LDI, but I believe it probably did. You can read my back posts from 2015 - we saw an immediate turnaround as soon as we began the injections (same day), and a much more normal life within a month. She got better and better as the months went on, and perhaps hit 100% after 9 months or so, but the constant burden and pain of all of that OCD was eliminated pretty quickly. Her LDA is for strep, and LDI for 15 strains of babesia/lyme/bartonella. She takes the injection every 8 weeks, and we get the injections in the mail every other time. Painless and so easy. There is an audio broadcast from Ty Vincent online, and that information may be helpful in educating you about this incredible treatment possibility for our kids. Hope this helps!
  3. We were definitely in a very bad place and at the end of the line. 4 years of high dose antibiotics, including a central line IV for 6 months, 3 weeks at Rothman clinic trying to address OCD, not attending school, commuting over three hours to work twice a week so she could live a slightly better life...it was a hard decision, but honestly we didn't have much to lose. We were thrilled when she qualified. Our story is too long for this thread, but our daughter is 100% and has been for the better part of two years. SO thankful to everyone on these forums and the special, determined parents and their kids we met who helped us over the finish line!
  4. In a nutshell, I wish I had known that constant strep infections can caused by the body's weakened immune system - in our case 6 months of treating PANDAS, suffering ups and downs, led to testing for Lyme and co-infections, which came back positive for Lyme, Bartonella, Ehrlichiosis, West Nile Virus, and eventually Babesia. I am grateful our PANDAS Dr. tested for Lyme after a terrible herx reaction to Augmentin.
  5. Hi Sarah, I feel for you and have been there! For detox, there are many protocols: epsom salt baths- several a day alka seltzer gold -as often as allowed burbur drops- 20 drops every 2 hours inositol- high doses (like 3000 mg) twice a day saunas- twice a day if possible We also tried to get as much exercise as possible. melatonin at night helps with sleep. Read "Saving Sammy" - it's a good info source.
  6. We did the vaccine challenge when my daughter's Natural Killer cells were at 1, and surprisingly had no ill effects. She qualified for a year of IVIG.
  7. You should absolutely address Lyme and coinfections before beginning IVIG, especially if you are paying out of pocket. You may, like so many others, find that your son needs 3 or more rounds of IVIG, and those still may not be effective if Lyme and coinfections are playing a role. Although IVIG will boost his immune system, it can't take the place of aggressive antibiotic/anti-malarial treatment.
  8. Hi, So sorry you are going through this! We also went through a period like yours. It morphed over time - for awhile my daughter would only leave the house if she could walk in another pair of shoes and leave those behind when she got in the car. Then she wouldn't get out of the car unless we were at least 3 hours away. Luckily we saw a doctor in Denver at the time. She would never reveal what her exact fears were...just wouldn't do things. But if you can get to the bottom of it, maybe you can figure out a way to get around it. Once we realized she thought she was getting "contaminated" by the driveway and sidewalks, and all the people who used them, we figured out that she could be carried or wear another pair of shoes. Another period it was the air that was contaminated - she had to hold her breath until she got in the car, and we had to leave the car windows shut until we were out of town lines before she was comfortable. And if she ran into anyone else from town once we got where we were going - disaster! Having an out-of-town doctor helped a lot. We even had to drive over an hour to get blood work done although there was a wonderful hospital a mile away from home. How crazy it all seems looking back! I know it is tough, but if there is a way to get around his fear no matter how crazy it seems, it is worth it to get treatment. After the first visit, we did a lot of phone consults. The doctors seemed used to this, and although not ideal, it was good at that time. Hope this helps. I only look at this site occasionally now. Finally 100% healthy after a long battle. Stay strong!!!
  9. Hi Rachel, You are living my life a few years ago. I'm so sorry you and your daughter are going through this. I haven't posted in awhile, always waiting for the other shoe to drop. But now I am a busy hockey mom, my daughter will attend a NE prep boarding school next fall, she has a summer job, and I am resuming my life too - I guess it is time. My daughter, now 15, at age 9 presented the exact same way as yours, in almost every way. She lived outside on our deck the summer she got sick, wouldn't enter the house. We were fortunate that a few moms on this forum sent us looking beyond PANDAS and my daughter also tested very strongly positive for Lyme. Although it is tough to tell, the doctors said it was over a year old, and looking back we thought perhaps 3-4 years. For 5 years she was off and on non-functional with crippling OCD being the primary symptom. She did have night sweats the first two years as well. We found our way to a doctor who treated for Lyme and also clinically for babesia and bartonella, with keflex, zithromax, mepron, plus herbs. She got better very quickly and returned to school. Eventually she relapsed and was home again. Couldn't eat any anything I cooked, couldn't go outside, lost 20 pounds, sat in one corner of the couch - it was horribly sad. Then a mom on this forum gave me her appointment with Dr. H in Hyde Park. Prior to this we flew to CA and Denver for our doctors, who were very good but just not in our lives often enough. She went on IV antibiotics for 6 months, improved again. Then fell back somewhat. Doctor put her on Lariam (very aggressive drug) for babesia - after 4 years during which she was always treated for babesia, she finally tested positive! Quick turnaround. Back to school and sports. Still some OCD but not as crippling. Still very hard on the family. A year later doctor determines she is largely autoimmune at this point. Moves to LDI/LDA treatment one year ago last month. Today she claims she is 100%. No OCD at all, for the first time in 6 years. She will continue this treatment, a small pinprick shot every 8 weeks. My daughter just spent the past 4 months with a school that traveled throughout South America living out of a backpack. She was the youngest of 16 girls there. She got top grades, went on 30 mile treks at high altitude, exhibited no OCD, and returned a different and more mature person. I never could have imagined that this would be possible for her. Our story is long and we were all very sad for those years. Sad for the loss of a childhood. Financially very, very difficult as well, we made and still make many sacrifices. Our memories are hard, but now we are all healing fast. It is amazing what good health will do to erase past trauma. My daughter is looking forward to her future with high hopes. Stay hopeful, keep looking, and never ever give up. Hugs, Laura
  10. First, you are a GREAT Mom! You will keep putting one foot in front of the other for your child. You will never give up on her. The one thing that helped me the most through 5 years of craziness was being able to pick up the phone and call some folks from this forum. Sometimes we would just text while sitting by our childrens' beds at night, other times talk throughout the day. It meant the world to me to not have to explain everything, to just be able to leap in and talk about the latest insanity we were experiencing. Some of these women I have met in person, others are just a friendly voice on the phone or text message from a familiar number. I will PM you my phone number and maybe others here will do the same. Call ANYTIME. Ultimately my daughter got healthy because of ideas and connections gleaned from this forum. Have hope - your daughter WILL get there!
  11. interesting link. Could explain why some of our kids with Babesia are infected with so many other unusual infections. http://www.npr.org/blogs/health/2015/04/22/401469931/why-do-mosquitoes-like-to-bite-you-best-its-in-your-genes
  12. Thank you! She looks like a great doc to start the journey with!
  13. Mt son's girlfriend in Boston believes she has Lyme. She's a PhD student at MIT so really can't travel very far. Please pm me if you have a recommendation. Thanks!
  14. I'm sorry for your loss and now to have this illness to cope with - my heart goes out to you! Someone will slap my wrist for posting this, but we were in your boat some years ago, and were able to find sites online for antibiotics without a prescription. It was expensive but worth it to tide us over.
  15. Sorry. Here is a link to a clinic in Colorado that provides this treatment. This gives a pretty good description. http://imcwc.com/html5-blank/low-dose-allergy-lda-therapy/
  16. I'm in Wolfeboro, NH now, but we drive far for everything It seems from this article there might be a different compounded mix for Lyme, babesia, Bartonella than the standard allergy fare... And I can't find East coast doctors who offer that, but it is manufactured and sold in Colorado Springs I believe, any one with more info out there?
  17. does anyone know of any docs using Low Dose Immunotherapy or Low Dose Allergy therapy for Lyme autoimmune? My friend in SF is having good success so far. Low Dose Allergy (LDA) Therapy : Integrative Medicine Center LDA is a treatment for turning off an overactive immune system. This applies to allergies, autoimmune diseases or any process in which the immune system is activated.
  18. We used IM with my daughter when she was 12. We iced her bottom for 15 min beforehand, gave Advil at first prior as well. They hurt but were manageable. We moved on to IV after two months so tough to say what helped the most.
  19. I pm'd you a couple of names of docs in your area.
  20. Michel, Lyme can be very difficult to diagnose, and many people don't test as positive until the body begins to mount an immune response, sometimes several years after being in treatment. Most llmds treat clinically in the absence of a positive test if the patient has enough symptoms. The new book "Why Can't I Get Better?" by Dr. Richard Horowitz has a symptom checklist that is a good diagnostic tool, for starters. Our dd14 only began showing up positive for Babesia after 3 1/2 years of treatment for it based on her symptoms of night sweats, shortness of breath, and OCD. Thank God her doctors treated her for that in the absence of positive bloodwork. Where are you located?
  21. Hi Michel, I'm sorry you are struggling so. I am just tuning in, and forgive me if this has been asked and answered already, but have you been evaluated and /or tested for Lyme by a LLMD? Your symptoms sound like a lot of us here, who began as PANDAS and later found Lyme and co-infections to be the larger problem. It can make all the difference.
  22. Sorry for what you are going through! Are you using a good probiotic (or three)?! We use 400-500 billion a day, which sounds like a lot but they really need it with all the antibiotics they will be taking to get well. Saccromyces boulardi really helps taken at the same time as the antibiotics, I believe it is the only probiotic you can ingest simultaneously with antibiotics and not have it canceled out. We do 25 billion with morning and dinner pills. Then we do VSL 3 mid day (112 billion) and custom probiotic powder at bedtime (250 billion). And also we have nystatin in the prescription mix. Not sure what you guys are dong, but thought I'd throw this out there. He could be drained from diarrhea and just really high yeast.
  23. I don't think bactrim would treat babesia - since it is a protozoa, things that are anti-malarials, like mepron, malarone, lariam, and also certain herbals like artemisinan, A-Bab, Bab-1, Bab-2 - I'm sure there are others we haven't been on yet.
  24. We found OCD the predominant and also the last lingering symptom, although physical symptoms emerged as treatment progressed. The most effective treatments we had for OCD were focused on babesia, (although it was only a clinical diagnosis for those years, we only got a positive babesia test after 4 years of treatment!) Very aggressive babesia treatment including lariam, malarone, and mepron, and herbals such as artemisinen, A-Bab, and cryptolepis, were all key factors in reducing OCD symptoms. Of course there was the herx and flare at first.. Although bartonella is usually blamed for OCD, I believe babesia plays a huge role as well.
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