Continued progress!

[laure]

Hi All,

I hesitate to post, because I know so many are struggling. We were there this time last year, in fact, November was the turning point when PANDAS became correctly diagnosed as Lyme for my Dd 10. Now after nearly 5 months of targeted treatment for lyme, co-infections, and addressing viruses and funguses, my child is a new person. So I feel it is important to let folks know to KEEP PUSHING for that person, who still exists under the layers of terrible illness.

Last night my daughter completed a complicated 2 week-long biome project, (board game she invented with 48 researched facts about the 6 biomes). She did this all alone, no help from us. Last year she could not read a paragraph (she could read, just couldn't focus on even the simplest of assignments). Some days she couldn't go to school, couldn't get out of the shower, couldn't wear shoes, couldn't come in the house. As recently as last June she had to shower after school before she could do anything, and couldn't shower at home, had to come to my workplace so as not to infect the house...backpack couldn't come in the house, school assignemts or books couldn't come home, etc. etc. etc. Even eating utensils touching the sides of her mouth was (horrifyingly) becoming an issue. It was a heart-wrenching, horrible time. We yelled at her all the time, she yelled back. We all cried all the time. All of that is so in the past now, amazing.

Currently she is still being treated for lyme, babesia, and bartonella...just recently began tindamax for cyst-busting and boluoke for biofilms, no serious herxing. She is a little tired and itchy all over and achey on tindamax days, but that is all. Didn't stop her from two hockey games this weekend and a couple of goals! Although we are still in treatment and will continue for at least another 4 months, I am confident that someday antibiotics will be gone from our medicine cabinet.

Anyway...as you can imagine, all is right with the world when your child is healthy. Continued prayers for all the suffering families out there. May you find health and peace soon!

Laura

[lfran]

That is wonderful and amazing. So happy to hear it. Gives hope to those of us who are still struggling.

 

You should try to get that published as a case report in the medical literature, so that mainstream medicine will start to take notice. Do you have any journal entries, videos, etc of that terrible time, to use as information for a case report?

 

Can I ask for clarification? You say she was diagnosed almost a year ago and has finished 5 months of treatment. Were you also treating for the first 7 months, but ramped it up at the end? Or was it a different combination of meds?

My DS10 started treatment almost 7 months ago and the big change is that the anxiety and defiance are gone or almost gone. But tics and compulsions come and go in their same, frustrating, life-impairing cycle.

[MichaelTampa]

How wonderful!

[laure]

To clarify, she was diagnosed in early November 2010 with lyme, but the treatment did not include herbal or detox remedies for viral and fungal infections, or mepron for babesia, which did not show up on original bloodwork. Her current doctor says that those viral and fungal infections were interfering with the abx ability to really attack lyme and coinfections. After 8 weeks of treatment for those, everything began to click into place, and all of the defiance, depression, and OCD just disappeared little by little. We never did any CBT or anything like that, although considered it...as she got better, faucets, doorknobs, public bathrooms, etc. all became "ok" again.

[momcap]

Laura, that's awesome news!

Please don't ever hesitate to post positive updates. We so desperately need them. Especially during the hard times. These are the stories that continue to give us hope and to press on through the ups and downs! I personally needed this today, so thank you! DS8 has made amazing progress in 3 short months - nothing short of miraculous! But there is still so much going on with him. He had a new tic this weekend, and an old tic reappeared. His younger brother, also positive for lyme and on 3 different antibiotics, has the streppy breath this morning. Aaaarrrrrgggggghhhhh!!!!!! Still, we're WAY better off than this time last year, when he was non-functional and couldn't attend school. So I'm counting my blessings and celebrating with you! Yay!

[KaraM]

Great news! Congratulations. It's so wonderful to get to know your child for who they are again.

[philamom]

Very nice Laura. Congratulations!

[lismom]

Laura, that's awesome news!

Please don't ever hesitate to post positive updates. We so desperately need them. Especially during the hard times. These are the stories that continue to give us hope and to press on through the ups and downs! I personally needed this today, so thank you! DS8 has made amazing progress in 3 short months - nothing short of miraculous! But there is still so much going on with him. He had a new tic this weekend, and an old tic reappeared. His younger brother, also positive for lyme and on 3 different antibiotics, has the streppy breath this morning. Aaaarrrrrgggggghhhhh!!!!!! Still, we're WAY better off than this time last year, when he was non-functional and couldn't attend school. So I'm counting my blessings and celebrating with you! Yay!

 

 

Laura thats fantastic news. Your persistance has been rewarded. Momcap, just wanted to let you know we are right where you are. We changed meds, and an old tic reappeared. However, I have to say that even though some tics are still around, and its been 9 months for my son with treatment, they have gotten milder and milder. And the one that reappeared is actually better than the one that just left. Fustrating I know though. The tics are relentless! Kathy

[jjl]

Laura,

 

Loved your post and happy for your progress. May I ask which viruses you treated and what treatments you used? I think our two boys need to address viruses and I look forward to hearing how you treated them. Thanks, John L

 

 

 

Hi All,

I hesitate to post, because I know so many are struggling. We were there this time last year, in fact, November was the turning point when PANDAS became correctly diagnosed as Lyme for my Dd 10. Now after nearly 5 months of targeted treatment for lyme, co-infections, and addressing viruses and funguses, my child is a new person. So I feel it is important to let folks know to KEEP PUSHING for that person, who still exists under the layers of terrible illness.

Last night my daughter completed a complicated 2 week-long biome project, (board game she invented with 48 researched facts about the 6 biomes). She did this all alone, no help from us. Last year she could not read a paragraph (she could read, just couldn't focus on even the simplest of assignments). Some days she couldn't go to school, couldn't get out of the shower, couldn't wear shoes, couldn't come in the house. As recently as last June she had to shower after school before she could do anything, and couldn't shower at home, had to come to my workplace so as not to infect the house...backpack couldn't come in the house, school assignemts or books couldn't come home, etc. etc. etc. Even eating utensils touching the sides of her mouth was (horrifyingly) becoming an issue. It was a heart-wrenching, horrible time. We yelled at her all the time, she yelled back. We all cried all the time. All of that is so in the past now, amazing.

Currently she is still being treated for lyme, babesia, and bartonella...just recently began tindamax for cyst-busting and boluoke for biofilms, no serious herxing. She is a little tired and itchy all over and achey on tindamax days, but that is all. Didn't stop her from two hockey games this weekend and a couple of goals! Although we are still in treatment and will continue for at least another 4 months, I am confident that someday antibiotics will be gone from our medicine cabinet.

Anyway...as you can imagine, all is right with the world when your child is healthy. Continued prayers for all the suffering families out there. May you find health and peace soon!

Laura

[Suzan]

Amazing story and I am so happy for you all! Really fantastic!

[laure]

Laura,

 

Loved your post and happy for your progress. May I ask which viruses you treated and what treatments you used? I think our two boys need to address viruses and I look forward to hearing how you treated them. Thanks, John L

 

 

 

Hi All,

I hesitate to post, because I know so many are struggling. We were there this time last year, in fact, November was the turning point when PANDAS became correctly diagnosed as Lyme for my Dd 10. Now after nearly 5 months of targeted treatment for lyme, co-infections, and addressing viruses and funguses, my child is a new person. So I feel it is important to let folks know to KEEP PUSHING for that person, who still exists under the layers of terrible illness.

Last night my daughter completed a complicated 2 week-long biome project, (board game she invented with 48 researched facts about the 6 biomes). She did this all alone, no help from us. Last year she could not read a paragraph (she could read, just couldn't focus on even the simplest of assignments). Some days she couldn't go to school, couldn't get out of the shower, couldn't wear shoes, couldn't come in the house. As recently as last June she had to shower after school before she could do anything, and couldn't shower at home, had to come to my workplace so as not to infect the house...backpack couldn't come in the house, school assignemts or books couldn't come home, etc. etc. etc. Even eating utensils touching the sides of her mouth was (horrifyingly) becoming an issue. It was a heart-wrenching, horrible time. We yelled at her all the time, she yelled back. We all cried all the time. All of that is so in the past now, amazing.

Currently she is still being treated for lyme, babesia, and bartonella...just recently began tindamax for cyst-busting and boluoke for biofilms, no serious herxing. She is a little tired and itchy all over and achey on tindamax days, but that is all. Didn't stop her from two hockey games this weekend and a couple of goals! Although we are still in treatment and will continue for at least another 4 months, I am confident that someday antibiotics will be gone from our medicine cabinet.

Anyway...as you can imagine, all is right with the world when your child is healthy. Continued prayers for all the suffering families out there. May you find health and peace soon!

Laura

 

 

In answer to your question John, she tested for ehrlichiosis, rickettsia, and XMRV, in addition to borrelia, babesia, and bartonella. There was one more fungus, but I cannot remember if I ever got the name. There have been a huge range of treatments from current doctor, and he switches them slightly each visit, but he uses artemisinen, samento, noni, mundipur, renelix, apo-hepat, (the last 3 for detox) and abx include mepron, zithromax, and omnicef, and there have been other herbal things as well, just cannot remember them all right now... Not all at once, and alternating some during the week. Way too complex to do on your own, I would say... can't believe I used to get this info, buy online, and shoot in the dark, but those were desperate times.

[adkmom]

What great news! I remember us chatting from the very beginning when both our kids were dx in November. It's been such a year and I can so relate to all the struggles you mentioned (with yelling and fighting in the family!) So exhausting! But you've been such a determined mom to get the right help for Sophie and it's paid off! Colin is still ticing and recently a psychiatrist said "well if it doesn't bother him, it's fine, right?" I told that to Dr. B and he chuckled and said, "yeah, but kids don't just tic, we need to stop it." So, your "Keep pushing" statement hit home with me. (During an evening when I thought maybe I'm making too much of this and should just let whatever it is be.) In relation to a lot of other children, Colin is doing pretty well, but he's not 100% and that's what we're all striving for, right? To get our kids COMPLETELY better. So, thanks for your encouraging words, you give us all hope!

 

Darlene

 

 

 

 

Hi All,

I hesitate to post, because I know so many are struggling. We were there this time last year, in fact, November was the turning point when PANDAS became correctly diagnosed as Lyme for my Dd 10. Now after nearly 5 months of targeted treatment for lyme, co-infections, and addressing viruses and funguses, my child is a new person. So I feel it is important to let folks know to KEEP PUSHING for that person, who still exists under the layers of terrible illness.

Last night my daughter completed a complicated 2 week-long biome project, (board game she invented with 48 researched facts about the 6 biomes). She did this all alone, no help from us. Last year she could not read a paragraph (she could read, just couldn't focus on even the simplest of assignments). Some days she couldn't go to school, couldn't get out of the shower, couldn't wear shoes, couldn't come in the house. As recently as last June she had to shower after school before she could do anything, and couldn't shower at home, had to come to my workplace so as not to infect the house...backpack couldn't come in the house, school assignemts or books couldn't come home, etc. etc. etc. Even eating utensils touching the sides of her mouth was (horrifyingly) becoming an issue. It was a heart-wrenching, horrible time. We yelled at her all the time, she yelled back. We all cried all the time. All of that is so in the past now, amazing.

Currently she is still being treated for lyme, babesia, and bartonella...just recently began tindamax for cyst-busting and boluoke for biofilms, no serious herxing. She is a little tired and itchy all over and achey on tindamax days, but that is all. Didn't stop her from two hockey games this weekend and a couple of goals! Although we are still in treatment and will continue for at least another 4 months, I am confident that someday antibiotics will be gone from our medicine cabinet.

Anyway...as you can imagine, all is right with the world when your child is healthy. Continued prayers for all the suffering families out there. May you find health and peace soon!

Laura

[laure]

What great news! I remember us chatting from the very beginning when both our kids were dx in November. It's been such a year and I can so relate to all the struggles you mentioned (with yelling and fighting in the family!) So exhausting! But you've been such a determined mom to get the right help for Sophie and it's paid off! Colin is still ticing and recently a psychiatrist said "well if it doesn't bother him, it's fine, right?" I told that to Dr. B and he chuckled and said, "yeah, but kids don't just tic, we need to stop it." So, your "Keep pushing" statement hit home with me. (During an evening when I thought maybe I'm making too much of this and should just let whatever it is be.) In relation to a lot of other children, Colin is doing pretty well, but he's not 100% and that's what we're all striving for, right? To get our kids COMPLETELY better. So, thanks for your encouraging words, you give us all hope!

 

Darlene

 

 

Hey Darlene,

That is why I am known as a "Hard Charger" by my friends, so keep pushing, pulling and fighting until the end. The more I learn the more I believe these kids are healthy, intelligent, "normal" kids if not for this disease...a lot of folks are being misled to believe this is a permanent condition, that their kid has tourettes, autism, ADHD, OCD, ODD, etc. etc. We were being lumped in that group for a short time by a few docs.... but I turned and RAN away, and never looked back. But I will say that we were very lucky/blessed to have the two older siblings who are healthy as all get-out, and really excelling in all regards, so we suspected being a genetic match, that Sophie should be at least half as successful as the older two - makes sense, right? To that end we were just plain lucky, and if she were our oldest, or if the others were even remotely close in age, we might not have suspected anything, just thought, "Dang, we've got a kid with ADHD/Tourettes/Tics, ISSUES. To all, REFUSE to give up on your child's health being 100% until you have open and shut EVERY door.

OK, just a couple of glasses of wine down here, feeling good in Central New York... enough preaching from me.

Happy Days!

Laura

 

 

Hi All,

I hesitate to post, because I know so many are struggling. We were there this time last year, in fact, November was the turning point when PANDAS became correctly diagnosed as Lyme for my Dd 10. Now after nearly 5 months of targeted treatment for lyme, co-infections, and addressing viruses and funguses, my child is a new person. So I feel it is important to let folks know to KEEP PUSHING for that person, who still exists under the layers of terrible illness.

Last night my daughter completed a complicated 2 week-long biome project, (board game she invented with 48 researched facts about the 6 biomes). She did this all alone, no help from us. Last year she could not read a paragraph (she could read, just couldn't focus on even the simplest of assignments). Some days she couldn't go to school, couldn't get out of the shower, couldn't wear shoes, couldn't come in the house. As recently as last June she had to shower after school before she could do anything, and couldn't shower at home, had to come to my workplace so as not to infect the house...backpack couldn't come in the house, school assignemts or books couldn't come home, etc. etc. etc. Even eating utensils touching the sides of her mouth was (horrifyingly) becoming an issue. It was a heart-wrenching, horrible time. We yelled at her all the time, she yelled back. We all cried all the time. All of that is so in the past now, amazing.

Currently she is still being treated for lyme, babesia, and bartonella...just recently began tindamax for cyst-busting and boluoke for biofilms, no serious herxing. She is a little tired and itchy all over and achey on tindamax days, but that is all. Didn't stop her from two hockey games this weekend and a couple of goals! Although we are still in treatment and will continue for at least another 4 months, I am confident that someday antibiotics will be gone from our medicine cabinet.

Anyway...as you can imagine, all is right with the world when your child is healthy. Continued prayers for all the suffering families out there. May you find health and peace soon!

Laura