Update on month of treatment

Hello everyone!

I thought someone might be interested in my son's progress since LLND appt Aug 3.

He had joint pain, brain fog, extreme fatigue, low BP, dizziness, Low appetite (lost 20 pounds in two months) high anxiety/ocd, insomnia, random nerve tingling, bad stomach upset.

Dr. Started him on doxycycline 100 mg in am, and 200 mg in pm with azuthromycin 500 mg twice/week. Also some supplements.

He also started beyond balance bab 2 midway through the month.

Well after 3 days, it was really hellish. His joint pain was extreme -maybe 8-9/10. He didn't leave the house for the month of August because he couldn't walk. At one point I was rolling him around the house on a computer chair. I was secretly planning on getting him a wheelchair -( he's 15 and I knew he would be devastated since the year before he was one of the fastest kids in our district and played volleyball competitively. )

He couldn't sleep, the pain kept him up all night. Some days sleeping at 5 am just from exhaustion.

I tried lots of things for detox. Epsom salts baths, lemon water, quercitin, Benadryl.

Things eased up maybe a bit, we stopped the am doxy because he wasn't getting up until 3 anyway so everything was messed up.

I got a little scared, because I didn't think I could take him to the dr. Because they don't believe in lyme. Someone told me to be careful because they might take him away if they think you are pushing medication on him. I was second guessing everything. Maybe he doesn't even have lyme.

But I emailed the LLND and he said this is not uncommon.

So then, the last day of August the hell stopped. Joint pain down to 3/10 in his knees! He did have a sore right eye and cheek for two days tho.

And yesterday and today no pain at all!!
He went to the gym yesterday, no exerting, just stretching and moving. He went to a homeschooling drop in for one hour! He did last years math for 1/2 hour!

I can't tell you how happy I am! I have been praying and hoping for him to have just one day with no pain and now we have it.

He still has extreme fatigue and his brain hurt with brain fog after 1/2 math but he was outside in the sun, walking, talking to other kids!

I just want everyone to hang in there and believe we can all have happy healthier days!

Hugs to all

Post Edited (Lymiemomster) : 9/13/2016 9:21:31 PM (GMT-6)

Hi Girlie!

Omgosh! I am soo happy!

We just needed a couple good days to keep chugging along and now we have it!

He was acting like his old self, jumping and running and leaping like a colt.

I kept thinking to myself -don't do that-you will hurt your knees/hips/shoulders/ankles haha (worrywart me)

I hope you and everyone else have many more good days!!

Post Edited (Lymiemomster) : 9/13/2016 9:22:37 PM (GMT-6)

Dear Denikeef!

I wish I could hug you all!

When things were really bad I was lurking here and I was really comforted by the knowledge and empathy everyone here shares.

Group hug!

That's awesome news! And his issues sound very similar to our 14 DS last year when he had his initial month of doxy. I felt like I was reading our story again too in a lot of ways.

Will he be on longer term treatment for co-infections and keeping the Lyme in remission? DS is 10 months in and continues to improve and is back to sports pretty much full-time without the intermittent symptoms causing days/weeks of trouble - so keep the faith that your DS will be able to resume his schedule again. We do still focus a lot of adequate sleep and he is in treatment.

It took us awhile to try but we found activated charcoal to be great as a detox especially for the fatigue. Pretty much miraculous for DS so I like to pass that tip along.

Please keep us posted on his progress the next few months.

Lymiemomster,

Thank you so much for posting this! Did he ever have a tick on him that you remember? I know so many do not. You are an amazing mom-detective for figuring it out and helping to heal him. How are his spirits? Will he have to repeat school? Major healing vibes to both of you.

I am getting my 14 YO looked at in December (earliest I could get in). He has had lots of odd symptoms that seem to add up to lyme. Frequent sudden fevers (that go away in 48 hours), three rashes in the past year, sore throats, loss of appetite, ocd/anxiety, knee/joint pain, now he says back pain, exhaustion after exercise. Sent home the second week of school with sinus infection/cold. Hard to tell what is coincidence, growing, sports.

How is your son about the volleyball? Parents worry so much about sports and the college apps. - is there a space on the college apps for 'had Lyme for over a year and was healing' - I joke that my son will grow up to be an LLMD when all this is over.

Please keep us updated on his progress. LOVE that he is playing and feeling the sun on his face. Your heart must have exploded!

Oh Lymiemomster,

My heart goes out to him. 15 is too young to change life so quickly. My wish is that he heals quickly and will grow up to be a compassionate young man. I love "My brain was the best part of me." Lyme does make us appreciate the brain. In once sense you are lucky to have been so on top and know what it is. There is a woman who wrote a book, the daughter of designer Tommy Hilfiger and she was sick her entire childhood/teen years and feels so robbed of her childhood. The heartbreaking part is that she kept being told she was lazy, imagining it, creating it, etc... I wonder how many young ones are misdiagnosed. He is lucky to have you.

Please keep posting I really want to know how it goes for him.