Anyone gotten well on long term abx?

[LaurenK]

Just looking for some happy stories with Lyme. Anyone out of the fog with this horrible disease?

[LNN]

I gather from your flurry of posts that you're in that tornado of emotions that come when you first try to wrap your head around all this. Is it lyme? Is it Pandas? Is it both? Will it ever stop? How did it happen? What do I do?????? It's a really awful place and we've all been there. It's like any dramatic event - you get the wind knocked out of you and you need time to adjust.

 

I'm not sure you'll get the exact sort of story you're hoping for, at least on this forum. Most of us started on the Pandas forum. Most of us are still in some part of the journey. Most of us have found more than just lyme in our stories (co-infections, mold, pyroluria, methylation blocks, viruses...). So you have to consider what any of us was dealing with in order to not get discouraged by how long it's taken. We're all on treasure hunts. Hopefully, as we discover clues and we share them, someone else's trip gets shortened.

 

With that as a background, yes, my son has gotten remarkably better since starting with our LLMD 15 months ago. But not from abx alone. We've also pursued some of the things I mentioned above. But I have my kid back - a kid I hadn't seen in 3-4 yrs. He may not be entirely done with treatment, but I'm feeling like we might be over the biggest humps and I can finally picture a time when he's done with treatment. I can imagine his getting strep and not going insane. I can imagine a time when my pharmacist isn't on speed dial.

 

(When you see me post now, it's usually about by younger daughter - I know it can get confusing).

[NancyD]

I know it may be a little too soon to say anything but I have been off abx for 3 weeks now and so far I am feeling GREAT! I'm still on supplements but off Doxy, Tindamax, and Rifampin. Time will tell...

 

My DD is also doing well. So much better than ever before. Too soon for her to go off abx but I'm pleased with her treatment. Right now our focus is on methylation and KPU. With the exception of anxiety and some obsessive tendencies most of her symptoms seem to be gone. Again, time will tell...

 

So have hope!

[Suzan]

We were greatly improved in abx (kids treated for 2 years for pandas with zithromax and 1 year for lyme with zithromax, amoxcillin and flagyl). However we are still on our journey and going down the naturals path. I am hoping the naturals will take us to the next level. We have learned a lot along the way and working on deotx, KPU and supporting the whole body for all the damage done by the lyme.

 

Susan

[SSS]

Way to go NancyD!

LLM says it best.

 

I don't feel my story is 'happy', but...we have seen improvements.

We took dd off antibiotics recently- in 1 week, she fell apart. Verbal tic's and onslaughts, impulsive,

etc., it was ROUGH and just miserable (at home.)

Called the LLMD, he called in 2 antibiotic prescriptions:

Viola! In literally 2 days we are good again (manageable and doable, have peace.)

 

I have been trying to work on dd's health for 2 1/2 years now- when I figured out health issues was what seemed to be her underlying heartbreaking and family breaking issues.

We did not know about PANS until 1 year ago, and just 5 months ago we finally learned it was Lyme and co-infections she was born with-

Since starting to work on her health, she went from a child with selective mutism who could not speak in a group, except to whisper in my or teacher's ear,

to being in an all day first grade public school class and thriving- good grades and excellent behavior there-fully engaged.

She wore gray colored ONLY sweatpants for 18 months straight- the same 3-4 shirts rotated-

now she wears different kinds of jeans (gasp!) and shirts.

The child with whom I could NOT leave a room without her, is now begging me to ride the bus to school by herself.

The child who was racked with fear for 3 hours at night trying to go to sleep, now goes right down.

These are just some things.

 

Oh yes, we have a ways to go, and we have set backs. But, just seeing her rapidly change from wild animal off antibiotics, to content within 2 days of back on antibiotics, tells me quite a bit. But like LLM, we have layers as well.

[MichaelTampa]

I feel I was helped enormously by abx I took for perhaps 8-12 months, something like that. I stopped not because I was better, but because it didn't seem they could do any more for me. I have been off them perhaps almost a year now and am doing better than that still. I have done MANY things both before lyme abx treatment started, during, and after that in order to continue getting improvements. I am still working at it.

 

I think all the alternative health care things I did prior to knowing it was lyme at least helped some basic detox and methylation pathways function pretty well, and the fungus was beaten down at least a little bit, and I think all that helped tolerate the abx without much in the way of herxing kind of symptoms. There are so many non-abx things that can also be done to help.

 

Before treatment started, I was off work for months, for the third time in a 4 year period. The first two were covered by insurance as the dx was something more acceptable, something psychiatric. The last one was not covered. As I was finally diagnosed with lyme and just getting treatment, I had been off work a couple/few months and disability was denied and I was appealing and being told I would have to get back to work. The appeal slowed that down a little, and I had 1 month of IV+oral abx before being told to return to work or be fired. I returned to work and it was horrific in terms of how badly I was impaired and how painful and fatiguing it was, but I managed to do well enough to keep my job through that period and to this day. Before that, I left work because employer had installed wireless routers that meant I couldn't have a conversation in there, I couldn't remember the beginning of your sentence by the time you ended your sentence. You might say I was a little bit sensitive to those microwaves. So the abx helped a lot, just in the nick of time as replacing the job would have been difficult. I have stayed at work as I continued to treat and do not have many symptoms these days, although still some minor ones and still working at it.

[momcap]

Just looking for some happy stories with Lyme. Anyone out of the fog with this horrible disease?

 

I keep telling myself when we get better I will remember this forum and come back to post our success story from time to time, and encourage others. But really, how many days will I spend on the forum when all is well and I'm not looking for answers and support any more? This forum is (mostly) a place for people still looking for answers, healing, and hope. It's probably not the best place to look for success stories. JMO.

 

That said, we are 6 months into lyme treatment and the improvements in our DS8 were nothing short of miraculous. Family members, principal, teachers, neighbours are using words like "not the same kid anymore" and it's true. Last year he was non-functional. Eventually he couldn't attend school and missed 88 days of grade 2. He had severe germaphobia that prevented him from showering, using a toilet, brushing his teeth, etc. At times he was unable to leave our home. He had near constant verbal tics. He was attending a juvenile mood disorders clinic, and also had generalized anxiety disorder. He was supposed go to a new school with a special class for kids with severe mental health issues. It was a nightmare. Then 2 months into high-dose combo antibiotics to target lyme and bartonella he was completely different. His OCD and germaphobia were all but gone. His brain literally turned back on and suddenly he could read and write, and was caught up academically in a regular classroom within a few short months. Verbal tics were 100% gone. He was relaxed, calm, even happy. We were seeing his smile again. He was making friends and going to their homes (first time ever). He started taking music lessons. In short, life was becoming normal for the first time since we could remember.

 

Then our family doc got really concerned about the high-dose long-term antibiotics and begged us to try him off for a few weeks and get another opinion. We agreed since we wanted to try the new lyme blood culture test anyway. Within 24 hours the "wheels fell off". It's been 1.5 weeks since stopping antibiotics and we're not sure if we can make it 4 weeks to do the new test. Our LLMD said it would take a minimum of 12 months to treat him, and probably longer. We were only 6 months in when we stopped last week. We continued all supplements and yeast meds, so now I'm 100% sure it's the antibiotics and not something else that was healing him. I'm very anxious to get back on track with our LLMD and get my son better!

[LaurenK]

Thx everyone. Im so lost right now.