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Posted 7/25/2017 9:57 PM (GMT 0)
So as most of you know, my mom is getting continuously worse. She took a week off of antibiotics but it didn't seem to help at all. I informed the doctor and this is what she said:

"if she is clearly worsening, I recommending stopping all her lyme related treatment at this point. It is possible her neurological condition is worsening despite our efforts to treat tick borne illness; could also be toxin build up. Would see how she does over the next week off all lyme meds, just do probiotics and detoxifiers, and would do the following labs (cbc, cp, magnesium, phosphorous, b12, b6, vit d), then let us know how she is in a week."

What are your thoughts? I don't think there is any saving my mom at this point. Idk what to do anymore.

-Kari
Posted 7/25/2017 10:37 PM (GMT 0)
Kari - she has been on IV abx, right?


I would not give up as long as your mom is willing to fight.

My thoughts are less aggressive - was the IV daily? (I'm thinking it was)

Talk to the clinic and ask for a pulsed approach...where she does M/W/F only or something like that.

And two weeks on, one off...


How long was she on these abx?
Posted 7/25/2017 10:49 PM (GMT 0)
Girlie - she has last week off all abx to give her body some recovery time. She did not seem to get any better at all.

She started abx again yesterday and they are going to do mon/wed/fri going forward. It was 5 days/week before.

She started out with only 3 days/week and they brought her up to 5. Then she started going downhill so I asked them to back it off. She's been doing the IV abx in general for a litttle over 2 months.

-Kari
Posted 7/25/2017 11:15 PM (GMT 0)
Hi KariW93,

Just offering support and wishing the best for you and your mom. Take care, Sincerely, Jo
Posted 7/25/2017 11:22 PM (GMT 0)
Is she taking anything to bind toxins/metals? If so, what? How many different antibiotics has she tried? They all hit different things so maybe this particular one is not working for her?

I can't recall if her symptoms are more ms or als? If ms, check cpnhelp.org.

Praying for you both...
Posted 7/26/2017 1:06 AM (GMT 0)
Does she get B12 regularly? B12 deficiency can cause severe neurological issues.

This book is very useful about what lack of B12 can mimic:

https://www.amazon.com/Could-Be-B12-Epidemic-Misdiagnoses/dp/1884995691/ref=sr_1_1?ie=UTF8&qid=1501031224&sr=8-1&keywords=could+it+be+b12

Documentary about B12:
https://www.youtube.com/watch?v=BvEizypoyO0
Posted 7/26/2017 1:09 AM (GMT 0)
K07-She was diagnosed with ALS. She is not taking any bind toxins/metals that I know of. She is on IV rocephin and IV Bactrim which I think are the best she can get?

Cake-she has had testing for B12 but they say her levels are good as far as I know :/
Posted 7/26/2017 1:12 AM (GMT 0)
Testing for B12 is like testing for Lyme. You can have "normal" lab-work but still be deficient. There are folks diagnosed with ALS who actually had severe B12 deficiency that are mentioned in the book.
Posted 7/26/2017 1:50 AM (GMT 0)
A family member of mine is going majorly downhill with lyme. Can no longer speak, choking, heavy limbs. I think it must be a perfect storm of infections/metals and possibly mold illness. Does she happen to have mercury amalgams? I could be wrong, but a mild binder shouldn't hurt. Sometimes, genetically, we can't get rid of lyme biotoxins on our own and will continue to get sicker if they are not cleared. I like modified citrus pectin (mcp - NOW brand) but cycling through a few different ones may be something to try. Many like charcoal, chlorella, cholestyramine (prescription), etc. MCP can mildly bind toxins from lyme and also some metals.

I wish I had an answer to help her. This is such a DIY disease.
Posted 7/26/2017 1:56 AM (GMT 0)
Hi Kari -

I agree with Girlie - if your mom hasn't given up yet, keep trying. Getting the dose and peripheral protocol right is extremely difficult for most of us and your mom's case is even more complicated. The fact that she is getting worse could mean many things, including that her body is trying to fight. I think your instinct to go back to 3 days/wk is good. Try that.

It took me about a month when I started both my IV abx (at diff times) to recover from the initial hit--and I was in better shape than your mom was, and younger, when she started.

I also agree with the gut binder. I'm sorry - I cannot remember if we've talked about this but it could help her body process the toxins and meds in a less disruptive way. k07 described it well.

-p
Posted 7/26/2017 2:21 AM (GMT 0)
I am so sorry you and your mother are going thru this. Just know we care! I wish I could offer advice but I am new in my Lyme journey. I do know detoxing has helped tremendously. I wish I could offer some advice.
Posted 7/26/2017 3:04 AM (GMT 0)
Kari this breaks my heart.

I so wish she could do herbs. They would be so much more gentle on her already weakened condition. Just my opinion. I surely am not a doctor.

She just sounds so frail..... sad.
Posted 7/26/2017 8:19 AM (GMT 0)
Did they turn down rifampin ?.creek trail is dave martz place they start with roceph 4 days ,zith 3 days a week ,riffy and tini ...can you take her home and do bvt it will give strength not deplete...praying for you kari

some 10 or 25g iv vit c or iv glutithione would help detox her

Post Edited (bluelyme) : 7/26/2017 2:22:36 AM (GMT-6)

Posted 7/26/2017 4:34 PM (GMT 0)
Kari - the week off probably wasn't long enough after doing consecutive weeks of daily for two weeks or more.

Are you able to add in a binder? You could purchase the Activated charcoal from a health food store.

It just needs to be a couple hours away from food, meds, other supplements.

And. lots. of. water. - it can be constipating otherwise.

Even if you could do the binder when you visit her...if the timing is right.

Kari - did you (and your mom) watch the video - where Dr. Martz speaks about his ALS diagnosis and recovery?
If not...it may be something to help your mom dig deep to continue.

I'm thinking even with the M/W/F - she should have a week off after two weeks.
Posted 8/23/2017 1:33 AM (GMT 0)
How is your mom doing?
Posted 8/23/2017 2:28 PM (GMT 0)
I'm not on here as much as I used to be, so I wanted to say that I'm so sorry Kari, that your Mom is still struggling so much. I hope that you can find something to encourage her to hang on and work through treatments. I was certain I would die (and was just hoping it to hurry up as I was laying in bed as things were shutting down in my body), but because I stuck with it, although I changed methods/approaches, I ended up healing and moving ahead with my life to do things I never thought I would do.

Thinking of you - and you, cakegirl - and wanted you to know.
Posted 8/23/2017 3:15 PM (GMT 0)
Kari hasn't been on since this post. Cakegirl, I worry about her and her Mom too.

I hope she comes and gives us an update.
Posted 8/23/2017 9:32 PM (GMT 0)

Traveler said...
I'm not on here as much as I used to be, so I wanted to say that I'm so sorry Kari, that your Mom is still struggling so much. I hope that you can find something to encourage her to hang on and work through treatments. I was certain I would die (and was just hoping it to hurry up as I was laying in bed as things were shutting down in my body), but because I stuck with it, although I changed methods/approaches, I ended up healing and moving ahead with my life to do things I never thought I would do.

Thinking of you - and you, cakegirl - and wanted you to know.

Thanks, Trav. I think about you guys too. Hope all is well with you and hubby.
Posted 8/23/2017 9:48 PM (GMT 0)

cakegirl said...

Traveler said...
I'm not on here as much as I used to be, so I wanted to say that I'm so sorry Kari, that your Mom is still struggling so much. I hope that you can find something to encourage her to hang on and work through treatments. I was certain I would die (and was just hoping it to hurry up as I was laying in bed as things were shutting down in my body), but because I stuck with it, although I changed methods/approaches, I ended up healing and moving ahead with my life to do things I never thought I would do.

Thinking of you - and you, cakegirl - and wanted you to know.

Thanks, Trav. I think about you guys too. Hope all is well with you and hubby.

Thank you! Yes, we are doing well - hubby is now doing much better than I am!!! LOL! What a wonderful thing. Now, to get me back on my feet more.

Take care, Cakegirl.
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