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Good Lyme Update


Suzan

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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

Edited by Suzan
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Strep 5 times already this year tho, yikes. Has anyone mentioned tonsil removal?

 

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.

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Hello Suzan. My heart goes out to you in terms of your expectations not exactly what you had thought. I just went thru the same when my son caught a chest infection and his PANS reaction was extreme and did not have plan really in place after 1 1/2 yrs. of focus on lyme etc. After this exacurbation dr. is now saying another year of treatment! Lyme, thank goodness, is not an issue.

 

Feel a bit mislead but after looking at last dr.'s notes I realize how far son had gone in relatively short amt. of time with current dr. Right before this exacur. hit, son was just starting to feel really better in over 2 yrs. We just hope to get back to that point sooner rather than later.

 

Best wishes on getting the strep under control. Have you checked for MaRCONs? Just a thought.

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Best wishes on getting the strep under control. Have you checked for MaRCONs? Just a thought.

 

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!

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Glad to hear things are fairly well minus the strep issues. It also might be biofilms in nose and the strep keeps releasing back into tonsil area and reinfecting. You can do a nasal swab to test for bacterias (might also be causing what appears to be allergies). The friend of mine you spoke with... they found 5 different bacterias that way hence biofilms.

 

I also wanted to let you know we just started homeopathy for Bartonella similar series on top of antibiotics protocol. Our younger son flaire'd immediately!!!!! We still have a ways to go with the series but I am hopeful it will help.

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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!

When my son had T&A, we had ENT do deep nasal culture. This can be very uncomfortable when they are awake (per dh). We asked ENT to test for MARCoNS, coagulase negative staph, & mold growth. His test came back surpisingly positive with MARCoNS, so did 3 months BEG nasal spray from Hopkinton Drugs. ND was very surprised that it came back positive the first time. She said it usually takes several tests in the office to get a positive. We figured it was because of how deep they did son's culture while he was in surgery.

 

Good luck with all of this. You may find some answers soon. :)

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