How long after Lyme treatment did you start really seeing results?

[Guest pandas16]

How long Lyme treatment did you start really seeing results?.. I mean to the point where your kid can function again off all antibiotics.

[MichaelTampa]

Before lyme treatment I was too sensitive to wireless signals to work. (The wireless signals were at work, not in my home.) There were times before I stopped trying to work that I couldn't carry on meaningful conversations, and I would forget the beginning of your sentence by the time you had finished it. I was forced back to work after one month of treatment, and that first month was absolutely horrible in terms of functioning poorly at work but trying to get by well enough, and in terms of the incredible level of fatigue I had each evening during the week, and really it took the full weekend to recover from the week. But, after two months of treatment, despite being put through one month of it while working, I was functioning much better. I did stop abx at that time, for insurance/money reasons, and did backslide slowly and restarted abx about 6 months later, and things see-sawed for a while. Now 18 months after I started treatment, I have been off abx now for 5 months and have not been backsliding, nor am I perfectly healed, and nor am I without significant treatment, I am just without abx as a treatment, mainly because I cannot tolerate the abx anymore.

[lyme_mom]

How long Lyme treatment did you start really seeing results?.. I mean to the point where your kid can function again off all antibiotics.

My son was treated for 2 years and 3 months by two llmds. When they thought he was finished he was and has been symptom free for over a year now off antibiotics. Same thing for me. I feel great and have no fatigue which was my biggest symptom. The llmds have a pretty good idea how long it will take and a year or two is common. I felt much better four months into treatment and I felt really amazing after nine months of treatment to give you an idea. My son went up and down over his long treatment but he was able to go to school most of the time. He was diagnosed in early summer so the worst of his lyme symptoms were when he was out of school.

[momcap]

We are not there yet. But 4 months into treatment my PANDAS DS8 is hardly the same kid. Yesterday we went to his psych appointment at a major teaching hospital. The psychiatrist engaged DS in conversation for 10 mins, then turned to me and said, "He's not the same kid anymore, is he?" No, he's not! We discussed the improvements for 15 mins, and he concluded the appointment by saying DS would be discharged and no longer needed the support of the mood disorders clinic. He really isn't the same kid. He could barely function last year. He missed 88 days of grade 2 last year, and when he did go it was only for a couple of hours a day. His OCD at times was so bad he couldn't leave the house, change clothes, shower, sit on a toilet, etc. He had severe mood dysregulation. Today he is happily attending grade 3 full time and catching up academically. OCD only flares up on occassion, but most days is gone.

 

So we are nowhere near the level of improvement you are talking about. He's still on combo antibiotics and we are experiencing a saw-toothed recovery. Our LLMD says from her experience he will require a minimum of 12 months on antibiotics, and quite likely longer. But I did want to share what we are seeing so far.

[momaine]

This isn't really what you asked, (because she's still on antibiotics) but I thought I'd chime in. 16 weeks into Lyme treatment, my dd made significant improvement, enough so that she could function relatively well during the day. (She even got a part time job at 15 this summer) She is now 9 months into treatment, and although she still has a ways to go, she is functional. The worst thing for her is still OCD difficulties at bedtime.

 

At her worst, she was non-functional.....thought she'd never be a functional member of society.

 

Weeks 4-16 after beginning lyme treatment were extrememly difficult with constant herxing.

[cidermill]

We are not there yet. But 4 months into treatment my PANDAS DS8 is hardly the same kid. Yesterday we went to his psych appointment at a major teaching hospital. The psychiatrist engaged DS in conversation for 10 mins, then turned to me and said, "He's not the same kid anymore, is he?" No, he's not! We discussed the improvements for 15 mins, and he concluded the appointment by saying DS would be discharged and no longer needed the support of the mood disorders clinic. He really isn't the same kid. He could barely function last year. He missed 88 days of grade 2 last year, and when he did go it was only for a couple of hours a day. His OCD at times was so bad he couldn't leave the house, change clothes, shower, sit on a toilet, etc. He had severe mood dysregulation. Today he is happily attending grade 3 full time and catching up academically. OCD only flares up on occassion, but most days is gone.

 

So we are nowhere near the level of improvement you are talking about. He's still on combo antibiotics and we are experiencing a saw-toothed recovery. Our LLMD says from her experience he will require a minimum of 12 months on antibiotics, and quite likely longer. But I did want to share what we are seeing so far.

 

 

Momcap ~ That is amazing news! So happy to hear that about your son. Can you tell me what his major lyme symptoms were that have changed so much? Also, what types of meds is/was he on? Thanks.

Christy

[momcap]

 

Momcap ~ That is amazing news! So happy to hear that about your son. Can you tell me what his major lyme symptoms were that have changed so much? Also, what types of meds is/was he on? Thanks.

Christy

 

Sent you a PM.