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Has anyone's speech or ability to walk gotten worse being on antibiotics?

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Posted 3/3/2016 6:59 PM (GMT 0)
Hello. I have an 18 year old daughter who was diagnosed with Lyme in September 2015. After starting antibiotics in October, we noticed that her legs became so weak and wobbly that she could no longer walk by the end of November. We added Mepron the first of January, and her speech became slurred. We are now taking her off all antibiotics for a month to see if her body can rest. Her speech for the last 2 days has been really slow and slurred, and she is struggling to form her words. The doctors feel that this is due to the high amounts of die off and inflammation. Has this happened to anyone else? I am wondering if antibiotics is too strong for her body. We have thought about going to the Hansa Center or something along those lines. Has anyone had success with this place? I am so sad to see my daughter suffer through her senior year like this. We do not know what path to take.
Thanks for any help.
Posted 3/3/2016 7:04 PM (GMT 0)
I'm so sorry your daughter is going through this. I can't imagine being a mom watching this. My heart goes out to you...

Yes, it sounds like a herx from the die-off of the bacteria.

"Has this happened to anyone else?" Most of us experience herxing at varying levels of intensity - depending on different things - how long we've been infected and how high our bacterial load is, whether we detox effectively, how aggressively we treat.

Is your daughter detoxing enough? Even though she's off the antibiotics, she needs to detox...to get the levels of toxins down to lessen her suffering.

If she's not detoxing...then have her start a.s.a.p. with a couple methods...and every few days add a couple more.

Here's a link with some good suggestions:

www.tiredoflyme.com/detox-methods.html

What was your daughter on prior to adding the Mepron in January? It sounds like it was too much too soon for her.

I know of a few members who have gone to Hansa and gotten results...
It is very expensive...and not everyone gets results.
Posted 3/3/2016 7:07 PM (GMT 0)
What advice did the LLMD give you? Has he/she suggested any detoxing throughout this?
Posted 3/3/2016 7:15 PM (GMT 0)
I did. My legs would just quite working randomly and I never knew when they would start again, or how long it would be when they would suddenly give out again. Same thing with my speech. I started stuttering really bad as well as all the regular speech issues Lyme patients could have.

I too am interested in what her LLMD has to say about this. My LLMD at the time had no idea how important it was to detox - and I had to learn the hard way, but I did it and then went on to heal very well. I'm treating a reinfection now though. eyes

What all does your daughter do for detoxing? The link Girlie posted is a really good one for suggestions. She will need to use as many as she can as the more detox pathways a person is able to "open up", the better their body will remove those toxins that are causing her issues like this.
Posted 3/3/2016 7:21 PM (GMT 0)
Frazzledmom,

I have a 21 year old daughter who I highly suspect has Lyme (a mom-daughter Lyme duo) and empathize so much with you as well. I am a newbie here, so don't have a lot of info to share....but I will share what happened with me recently.

The list Girlie posted is so wonderful (detox methods). However, I learned the hard way that these detox protocols aren't all just an innocent "flushing" out of your system. Thank goodness for this forum when I discovered that I was having severe herxing (I too have word retrieval issues and very weak legs) FROM SOME DETOX METHODS. They are powerful. I took way too much (the 10 drops recommended) of Nutramedix Burbur/Pinells (which is on that list) and suffered so much...my legs started twitching like crazy and I felt very bad.

My point is that this forum will guide you with which products to start. I even took a higher dosage of turmeric a few days ago (antimicrobial) and went downhill fast. For me, my detox pathways aren't clean enough yet, so the more I kill off or mobilize via detoxing the MORE herxing I have! I'm just "assuming" that your daughter is already overloaded with die off, like you stated, so just be careful to help get it OUT, not choosing ones that kill off MORE.

The people here have so much experience to share. I just wanted to share that detox products are strong and to have the forum help you choose which ones to start with, given overload is suspected.
Posted 3/3/2016 7:40 PM (GMT 0)
We started detoxing back in September. We do epsom salt baths, dry brushing, charcoal, infrared saunas, lemon water, burbur, pinella, etc... We are doing them all. The dr. feels that she just has an overload and the inflammation is causing all of this. We will start physical therapy in a week to help build up her legs. She was pulsing Amox. and Azithromicin with flagyl. After the doses of flagyl, she seemed really weak and stuttering started. We then switched to amox., azithromicin, enula, and mepron, with flagyl on 2 days. This was on a pulsing schedule. Before we started mepron, her speech would start slurring. Once we put her in the sauna, her speech returned to normal. Then after going on mepron, the speech would slur but not get better after detoxing. Traveler--did your speech return to normal? Has anyone ever tried Dr. Szulc's protocol? How do you know if antibiotics are just not right for you?
Posted 3/3/2016 8:44 PM (GMT 0)
Poor Mom, this has to be so very hard to watch for you.

I do know that I got sicker before I got better.

I found I could not do antibiotics because I threw up. My chest, back and stomach muscles were so very sore from getting sick. It only had to happen a couple of times and I was thinking I had to find something else.

I had times where my legs gave out. I thought it was because I have bad knees but I think it was lyme. I also had slow speech. I could not get the words to my mouth. I knew they were in my head but there was a freeway missing to get them out of my mouth. Frustrating as all get out.

If the doctor feels she has an overload and the inflammation is causing all of this -- did he offer any solutions???

Ursamajor68 is correct in that some of the detox methods can make you worse before they make you better if you do them too much or too often. They have to be worked up to. And if you combine a lot of them, they also have to be worked up to.

As for Dr. Szulc, I am not familiar with him. My first question would be is he ILADS (International Lyme And Associated Diseases Society) trained? That would tell you if he is right for your daughter.
Posted 3/3/2016 8:44 PM (GMT 0)
Yes, my speech returned to normal once I started detoxing really well and realized I needed to use something other than the "big guns" of pharmaceuticals. I'm considered an abx failure.

For me, it was simply that I couldn't stop herxing really bad. I started having seizures, had no working memory (short or long term), couldn't follow written instructions or oral instructions, couldn't follow patterns (think making shish-ka-bobs, nothing difficult), and more. It took me a while to detox enough to be ready to go on with treatments, but you can see my symptoms were really bad. My doc didn't think detoxing was that necessary, and I followed along because I was too sick to think clearly. I stopped the pharma abx, detoxed for a long time and then went back into treatment with herbs only.

Dr. S's protocol for what? I did look him up and found (if this is the right Dr.) that he advocates for Lyme treatments: "Personalized pathogen-related treatment: May last 3-4 weeks and consist of aggressive anti-pathogenic treatments,..."

([url]http://nycim.com/lyme-disease/[/ur])

I can tell you that 3 - 4 weeks won't do much at all for Lyme, unless it's caught at the very beginning stages before any symptoms appear. So I'm not terribly impressed with that part of his protocol, and he didn't list chronic Lyme.
Posted 3/3/2016 8:46 PM (GMT 0)
I found out that my body (liver) has a detox mutation. So abx was pretty hard on me. Nuero and body, speeck, word recall, slured, arms almost stopped working- and liver enzymes were high even with detoxing. So LLMD pulled me off ABX. It was freaky.
Posted 3/3/2016 8:46 PM (GMT 0)
That's actually quite amazing that after the sauna her speech would be fine. Really does speak to the power of detoxing.

I wonder if she may need a more powerful binder - like cholestyramine. Some with lyme have an "HLA genotype" that makes it very hard for us to get rid of toxins. I know that using cholestyramine is what they suggest for that. I actually have this gene - it think it's HLA 15-6-55 or something like that. I currently take modified citrus pectin which is not as strong as cholestyramine. I notice if I don't take it I have a hard time sleeping. Just a thought.
Posted 3/4/2016 12:25 AM (GMT 0)
We had a mold test done last month, and it showed mold in my daughter's blood. Therefore, she started taking cholestyramine last week. The doctor tested her and found that she has the gene that predisposes her to mold and lyme meaning it is harder for her to fight these illnesses. So we are on that binder and now dealing with two situations I feel sure that it is inflammation and toxins. Her ammonia levels were high but we did get those down. I think her doctor feels that coming off the antibiotics and detoxing will get us back to a good starting point. They feel that they will have to start slower on the antibiotics at lower doses.
Traveler--when you came on antibiotics and detoxed, what protocol did you start that you know worked for you? I guess I want to have a plan if antibiotics are not the best thing for her.
Astroman---what did you do after coming off antibiotics?
Has anyone ever been seen at John Hopkins or places like that? just curious.
Posted 3/4/2016 1:45 AM (GMT 0)
Frazzledmom- was the "mold gene" HLA-DR..........?

I didnt know it had anything to do with lyme susceptibility.

ABX: Thats when I ended ABX. No more lyme killing after that, just candida treatment. My LLMD pulsed my ABX after the first round though- because of my liver #'s. I now take a uncommon supplement for my liver mutation a few times a week.
Posted 3/4/2016 3:05 AM (GMT 0)
All I was told is she has the gene 4-3-53 which indicates that a person can be susceptible to biotoxins from lyme and mold. Do you know anything about this?
Posted 3/5/2016 8:52 AM (GMT 0)
Astro is it pathway 1 or 2...whats the supplements. Frazzmom...heathers dad like jergan at hansa...dr j in dc has clinic...if had the doughnuts id gether on cowden ..fill her with chorella ,pectin and charcoal, keep up with sauna...buy mhbot and gb4000 with mopa and doug coil, test at fry labsfor proto and coinfection , get phages and do biophotons ...and everything else. Hugs. You are a great mom
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