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Posted 3/15/2014 1:42 PM (GMT 0)
I am continuing to get worse.I started treatment again in November with a new LLMD for me. He found a lot of my issues, like mold, many confections, can't detox, and I have parasites.

I am using csm or cholestermine for the mold, and on three different antibiotics. I am falling everyday now, my legs, and arms are going numb. I use a walker just to get to the washroom, I can no longer cook , clean, or even make it outside without help.

I have tried herb, and now antibiotics, on both I start to improve a little then go backwards. I have changed my diet the last year, and follow a very strict one. I detox daily with epson salt baths, and bought a foot detox to do my feet every three days.

I am running out of options. I am not sure where to turn, I have a appoint on Apris 1st to see a neuro doctor per my LLMD, he thinks something else maybe going on.

The antibiotics has helped with pain, and my head is clearing, but nothing is improving my body. I am looking into oxygen therapy as we found a place by us that is pretty cheap.

If anyone has any suggestions please let me know. I am started to believe I will be in a nursing home before my 40th birthday, as I am needing round the clock care now. My husband and kids have taken over so far, but it's wearing everyone down.

Thank you.

justme
Illinois
Posted 3/15/2014 2:16 PM (GMT 0)
So sorry to hear that you are so profoundly ill. I hope the medications you are taking start having an effect.

I hear coffee enemas are good for helping detox when you body is unable to do it automatically. I never quite managed to do it, so I can't speak directly to their effectiveness, but others I know swear by it. If the antibiotic have helped, then a lot of your symptoms will improve with more detoxing.

Hope you turn the corner soon!
Posted 3/15/2014 2:20 PM (GMT 0)
How long have you been sick? Have you had a spect scan? Also are you able to travel to see a different doc, is your doc a really really good lyme doc. I can recommend a very good, the beats actually LL neurologist. He Conn though.
Posted 3/15/2014 4:51 PM (GMT 0)
I got sick in 2012, and just continued to get worse. The last 6 months or so I have been stuck in bed. I can't travel right now, we don't have the money, but please pm the doctor, maybe in the future I can.

I have never had a spect scan, but just about every other test in the world. lol

Thank you.
Posted 3/15/2014 5:07 PM (GMT 0)
Oh Justme, I wish I could give you a big hug.

Just throwing this out there, have you tried takesumi? It's carbonized bamboo and works similarly to activated charcoal. This is helping me detox a lot.
Posted 3/15/2014 5:08 PM (GMT 0)
I e mailed you
Posted 3/15/2014 5:10 PM (GMT 0)
Also being treated for mold is great but is there a source of mold you are being exposed to, if so it can seriously hinder progress. Also what about co infections?
Posted 3/15/2014 5:23 PM (GMT 0)
I was exposed to mold at my old house, and old job. I have moved away from both, but can't seem to get the mold out of my body. I have mycoplasm, ebv, hhv6, and Chlamydophila pneumonia. I did come off one antibiotic today, it's one I just started for bart, and my body is a little more movable. I mean I can use the cane to get to the washroom.

I feel that I will be 39 years old in a nursing home, because it's a lot of work for my family, and if I get any worse, I don't know how they will be able to care for me. Right now they are doing a excellant job, bringing me food, medicine, whatever I need. It 's just a lot for my husband and kids to deal with.

Post Edited (Justme4508) : 3/15/2014 11:31:32 AM (GMT-6)

Posted 3/15/2014 6:39 PM (GMT 0)
Have you been tested for MTHFR? If you have it you will not get better until you address that. It is a genetic disorder that prevents you from digesting vitamin B9 (folate). Also, you don't mention any detox. My health started to get better after I started colonics. I feel terrible for you and what you are describing is just an absolute nightmare! Hope things get better for you!
Posted 3/15/2014 7:01 PM (GMT 0)
I understand I was very ill with lyme while I was pregnant and they didn't know I had it and I was bedridden and had to use a wheelchair when we went to stores. I already had four children who I likely passed this disease to and they cared for me through my pregnancy with their baby brother. It is a lot but families pull together. I share this only so that you know you aren't alone. There is hope, you can get better. Sometimes we just need to switch up the plan. Do you know when they've done studies of survivors of various crisis and tried to distinguish between those who survive and those who don't what they found. The major defining factor was ones ability to change the plan they had in place when it no longer worked or wasn't an option. I think your protocol needs some serious tweeking and you may need a new pair of eyes to see you.
Posted 3/15/2014 7:11 PM (GMT 0)
Hi Justme,

I'm so sorry your situation is getting worse... I wish I could help with something...

I have a detoxing problem too, but my dr was into using bentonite clay/psyllium husk shakes. He's not stressing at all on detoxing, but knowing my problems, he has adviced me this. You will have to drink a lot of water with it to keep it moving. He said that the charcole was not good for me because of my leaky gut, it would reabsorbe everything. I was having a bad brain day when he explained, but this is what I understood, the explanation is not complete at all, I'm sorry.

This is an interesting article on coinfections and how to treat them with what abx (dosages mentionned), maybe it can help you?
http://www.benthamscience.com/open/toneuj/articles/V006/SI0078TONEUJ/158TONEUJ.pdf

Hold on,

Marie
Posted 3/16/2014 4:10 AM (GMT 0)
I do have the mutation gene, I do not detox. Today I did lots of research, and talked to some great Lyme wariors. I came to the conclusion, the abx is making me worse because my liver can't detox the toxins. So I decided to come off the treatment, and focus on my liver, and detox issues first. The abx isn't going anywhere.

I do detox baths, foot baths, take charcoal, but just bought today some Gluatathione, b 12, and liver support. I am going to work on that first, try to open up my pathways, then I can work on killing off the buggers.

Thank you all

justme
Posted 3/16/2014 4:12 AM (GMT 0)
If you can get IV glutathione I would.
Posted 3/16/2014 1:47 PM (GMT 0)
Hi Justme,
I'm so very sorry that you are still so very sick with this!! My heart is so heavy and just breaks for you. You are a Lyme warrior as you still haven't quit fighting!!!

I do hope that you are on the right track with this! Once you get those detoxing pathways opened up, at least you will know that you are able to get rid of the toxins - one less thing that your body has to deal with.
Posted 3/16/2014 2:57 PM (GMT 0)
I came off all my medication, and started working on liver support today. My legs are moving better, and I am having less sharp pains in my head. I do believe that my body is so toxic with all of the die off.

Thank you all, I hope to be going in the right path.
Posted 3/16/2014 2:59 PM (GMT 0)
Good! I'm glad to hear this, detox your butt off!
Also if there's anyway you can get an infusion of glutithione it would work wonders with detoxing you.
Posted 3/16/2014 9:25 PM (GMT 0)
I can't get the IV kind, but I did buy the kind I eat on the spoon. I have never used it before, but was told it works very well.

thank you all
Posted 3/17/2014 6:54 PM (GMT 0)
Hi Justme,

I am very sorry to read about your predicament today. 

I had issues with the liver too.  My naturopath recommended the coffee enemas for this.  It specifically detoxes the liver.

Now, whenever I start herxing due to new meds, I start up the coffee enemas.  I do them every second day.  When I go to my doc for a follow-up, she is always pleased that my liver tests well after reporting my 'feeling worse due to herxing'.

It is 'wierd' first when you do them, but they have definitely helped me.  I have detoxing issues too.  I have never been tested for MTHFR, but the signs and symptoms of detox problems are there.  Somehow though, my liver is doing well.  I credit the coffee enemas for that.

Posted 3/18/2014 1:03 AM (GMT 0)
Truly praying for you justme. I do pray for you in my daily prayers and will continue to do so until you're fully healed. We are the same exact age. I just turned 39 and I'm a true believer in your healing. You will totally heal and get your life back. I love you and sending you tons of hugs and prayers from the DC area!!!!
Posted 3/18/2014 3:20 PM (GMT 0)
Thank you all, I am going to try the coffee enemas too, I hope they can help me.
Posted 3/18/2014 4:15 PM (GMT 0)
Glad you're feeling a bit better, Justme! You are on the right track :)
Posted 3/20/2014 8:09 PM (GMT 0)
I can't find anything to control the seizures, nothing has worked. I had 7 today. I am detoxing my liver hoping that will help. If anyone has good success controlling their seizures please let me know.

Thank you.
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