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Suzan

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Everything posted by Suzan

  1. My daughters and I initially were taking the lyme series (started a year ago) and we had great herxes from it and were much improved. Our doc (not a LLMD but a natural doc who also treated lyme) was quick to say we were cured so we continued to take it periodically on our own. Then it became apparent that dd11 had bartonella too so she started taking the bartonella series with intense herxes as well. I just started taking the bartonella this month after realizing I most likely had it as well. My plan is to alternate every so often (not sure how often yet) between the lyme series and bartonella. I really believe it's helping us get better. Soon I will also introduce the rife machine and work with the two together. Susan
  2. Update, I've gotten a horrible anxiety herx. Once I realized my anxiety was from the treatment, I got very glad to see a nice herx, LOL. Susan
  3. One dd was 118 (thought to be lowered due to her high taurine intake at the time) and the other was around 175 (can't remember exact number). Both had PANDAS symptoms and have been diagnosed with lyme. Both still react to strep but oldest dd with the highest cam k reacts the strongest and gets strep all the time still. Susan
  4. Lilly, my dd (who was 7 at the time of this post and is now 11) is much improved. She still has yeast issues due to her continued antibiotic usage but it is controlled now by periodic caprylic acid and also daily threelac plus rotating probiotics like PB8 and New Chapter Total Flora. Her behavior and itching, gut issues and most symptoms are significanlty improved that I attribute to all her treatments including lyme treatment and also total body support through xyto scans which showed her imbalances. We can't afford to do that anymore so hopefully we can keep her on track now. Good luck to you! Susan
  5. Great update! I am so happy for you and your family! It's really great to hear especially since I have been down this week wondering what will happen to us. I don't have any more money for treatment so I am having to change our protocol so we an do the best we can with what we have. Hopefully I've learned enough along the way to continue to get well! susan
  6. Thank you Nightengale! Great information and I really like to hear the experiences of others. I did very well on the lyme series and I just started the bartonella series. My 11 yr old daughter has been doing the bartonella treatment for a while now and although the herxing was bad, she's improving. I have not noticed much with my bartonella treatment (I'm 3 vials in) except for a wicked cold. I think I have bartonella but not sure. Susan
  7. I will keep you posted! I will make my purchase after I get my tax refund back. I have not tried a-bart or A-l. Do you need a doctor's prescription for those? I there was one other homeopathic treatment I planned to try at Michael's recommendation but I need to look up what that was. Timing was not right yet but it might be now.
  8. Yes we are still doing deseret homeopathic protocol and I really like it. I think it helps us a lot. DD11 did the lyme series for several months and is now doing Bartonella treatment. I stopped the lyme protocol for myself but realized I still need it. I am about to buy a rife machine so maybe I can be the resident rife expert after give it a try. I am out of money and can't do too much more with professional help so I'm looking for anything that can help us that we can do on our own. I hope to stick with our current lyme doc as long as I can while dd11 needs the zith. I tried homeopathic strep remedy for her but it was too powerful. I hope to try it again after she gets more stable. Have you thought about trying it for her?
  9. Hi! Thank goodness for email notification since I haven't been online for a while. We did get this test at the time but ours was 100% negative. I'm not sure what value it could add, probably a lot if you found something there. My dd continues to have trouble with strep throat (had it 6 times last year and is on daily zith again) and she still is battling bartonella and probably lyme. But the strep didn't show up on this panel for us at the time we took it. Susan
  10. Hello, I don't have great info for you but I will send you a private message with what I know.
  11. Shoot! I didn't see this until today
  12. Wow, fantastic! Thank you for posting!
  13. Our doc has me give a GABA spray at bedtime and melatonin. He says we can go up to 50 mg! I've never heard anyone say that high. Obviously we have not done that but I give 2.5 mg sublingual tabs and typically will give 2. 5 mg usually does the trick (not without a lot of anxiety still)...It does not help to keep her asleep though. Maybe I should try time released. Hmmmmmm Susan
  14. Mostly big HUGS from me. We use epsom salt baths that seem to help. We are just learning about bart and getting that all stirred up with my dd11. She is showing signs of confusion along with other things. I'm hoping to get some tips from others too.
  15. My 9 yr old (10 next week!) has not relapsed. She has been off abx since January. In January, we went on Deseret Biological lyme remedy and she reacted to that with rashes and mood liability. But then she improved. She is off all lyme treatment now and holding strong. Her primary symptom was food restriction, food ODC, difficulty gaining weight and impulsivity. I watch carefully for any of these to come back. She still has a loud volume and some impulsivity that we are treating with other supplements. Susan
  16. OMG, I am so sorry! This is just awful. Treating KPU helped us a lot. Also, Deseret Biological Series therapies are very helpful for us too. Still abx help my dd the most and we can't get any right now either! LLM, I didn't realize Ann Corson does not use abx! I'll read up on her protocol again. HUGS! Susan
  17. We use it and our wellness doc loves this product. I can't say whether I think it's helping or not but it's been a part of our overall wellness protocol. Susan
  18. Well, I am the only adult in our house and dd11 can hold things together pretty well when others are around. But when it's just us, she can really fall apart and I can get very frustrated, scared, worried, stressed and yell or get angry when I know I should not. It is very sad since I know she has no control over her behavior and I feel I should know better by now! Hugs!
  19. Really great gains! Contrats! The buzzing in my back and head is finally GONE! (knock on wood ) and all of my bad lyme symptoms are gone. But you probably were asking about the kids dd11's pain is GONE! Emotional outbursts don't last all night anymore. dd9 eats more than a teenage boy (seems like it anyway)...had perfect attendance last year! Not sick once. She can read and write now. There's lots more for us I'm sure but those are some highlights. We are busy stirring things up right now and I know things can ebb and flow but we have many happy stories to share! Susan
  20. Hi, my perception is really that they are both correct. I believe you can have PANS without lyme but that Lyme can cause PANS. We are having a strep issue this year after treating our lyme and the pandas symptoms are flairing. Is it because there is still lyme in her body? I don't know. Is lyme the only underlying cause of pans? I don't really know that either but I suspect that it's not. Just my thoughts on it. I had hoped that curing the lyme would cure our pandas but now I am thinking there are other things at play.... Or maybe the lyme created the PANS but it can exist on it's own until the body is totally healed?
  21. Julia, I have not looked into MaRCONs yet. What can you tell me? I'll google it too. I am glad your son is imprvoing too and hope you don't back slide for long! Thanks!
  22. She already has her tonsils removed (age 5)! ENT appt last week showed everything looks ok. Did you know adenoids can grow back? Hers have not and he doesn't have any other suggestions except replace tooth brushes, wash hands, avoid exposure.
  23. Hello everyone! I wanted to update you on our lyme situation to say that we are all doing very well overall! We are off all lyme meds including homeopathic and holding our own. I don't know if our lyme is gone (I figure it is not) but seeing the natural doctor really helped us by getting personalized supplements and taking the homeopathic treatment (deseret biological lyme series). I have to still assume it will rear it's ugly head again and send us on a new direction but otherwise I'm not sure which direction to take right now. The credit cards are maxed and I don't know what more I can put on them without being unable to pay the bills. My brain function is close to 100% and the feelings of overwhelm are very low. I have the energy I need to get through the day and I think inability to exercise really comes from years of not exercising so I'm going to work on that very slowly and see if I can tolerate it. We do find ourselves back in the strep situation however. dd11 has gotten strep 5 times this year after we came off of 4 years of abx. Our doctor's don't know what to do and each time she gets strep her anxiety, fears and emotional pandas symptoms come back. I am crushed to say the least as I hoped beyond hope that treating the lyme would cure our pandas too. Of course she is in much better shape than she was before we treated the lyme. She is back on a 3 week high abx dose and not sure what will happen after that. However after going the homeopathic route for lyme, I did buy some deseret biologicals staph/strep homeopathic treatment to try to uncover her hidden strep. After using that for a week, she has broken out in a rash and is having an increase in symptoms. I was researching what some autism mom's had done with their children who battled strep and I have a few homeopathic treatments to try. dd9 showed high levels of peptostrepoccous so I got a homeopathic treatment to help purge this and she is having increased symptoms as well right now. My hope is to get rid of some of these things in their body so that maybe their immune system will work better to fight any remaining lyme and the strep. Anyway, just wanted to check in and say hello. Thank you all for all your help and suggestions that helped us get to where we are today. I can only hope that things stay at this level and then continue to improve. Any homeopathic discussion would be great if you have tried anything for strep or other viruses, etc. I know I've posted some of this before regarding lyme. I still have those discussions saved and once I get back to being able to think about any remaining lyme for me, I will probably start down that route. Thanks, Susan
  24. My VEGF was high and my original LLMD wanted to track it to monitor possible bartonella. She retired and my new doc's have not gone down that route. But it was something she felt strongly about and she was a great LLMD. Good luck with your dd! Susan
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