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Almost 2 years with Lyme, now what??

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Lyme Disease
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Posted 5/25/2014 2:21 AM (GMT 0)
I wish I could come on here and report I was better, but I am not. I have been working on getting rid of parasites, I have tons of worms, not sure how they come about, but I think most people with Lyme has them.

Also I have many co infections, and the darn seizures, that seem to love to cause me pain. I have tried the herbal route, the antibiotics route , the all natural route, and even odd things like bees venom, my body will do okay for a few weeks to a month, and then pow , I am back to where I started in bed, can't walk, can't do much else.

I do believe if I keep trying things, I will find something to help me, but at this point not sure what that would be. I am out of money, and had to file for disability.

I have also been looking at the big Lyme clinics, if I ever get enough money, I am not sure which one I would try. I have mold issues to , so I am trying to address that now.

I also have tried cinnamon oil, and it did help, but then again here I am back in bed, unable to walk, everything for me only works for a short period of time.

I have two of the mthfr genes, so my body won't detox on it's own I am trying some stuff to get it to detox.


If you all know something that may be able to help me , I appreciate it, I am now back on antibiotics, to try and help with whatever that is going on with my brain, getting brain zaps lately.

I can no longer afford my llmd, so I am doing this on my own for now, with some support from my family.

justme in Illinois
Posted 5/25/2014 4:09 AM (GMT 0)
Things that helped me: colonics, Cholestyramine for mold, Purify by The Tree Life for parasites and Protomyxzoa. When I started doing colonics my health started to improve. Now that I take Cholestyramine I feel like I get better and better every day. I have the mold gene HLA and I am compound heterozygous MTHFR so I know what you are talking about. Good luck, hope this helps! I also do green coffee enemas on days I don't have a colonic. I do two colonics per week. Also, you need to make sure your house is mold free. You need to get someone who treats with TM100.
Posted 5/25/2014 4:18 AM (GMT 0)
JustMe, about your mold issues - you can actually see mold in your home or you know that it is there ? ... That is a sure way to keep from progressing ...

How about wheat and gluten ?

Years ago, there was a family that opened a lighting store near where I live - and the owner was always in a wheelchair .. For a while, she was gone, and then she returned completely well and out of the wheelchair - she was severely gluten intolerant, and has been contemplating treatment for MS

The wheat was killing her ...

And how about metal exposures ? Do you have a lot of silver fillings ??

Post Edited (Tano) : 5/24/2014 10:23:02 PM (GMT-6)

Posted 5/25/2014 12:52 PM (GMT 0)
We moved from our old house after five years, when I found out it had really bad mold. The rental we are in , we had it checked , we did a ermi on it, and it's clean of mold.

I do have silver fillings, I am hoping to have them removed soon as I can afford to.

I am have very bad gluten issues, so I try to stay gluten free 95 percent of the time, sometimes my family forgets to check the box or package, and I may ingest a little.

I have heavy metal poisoning. I am trying to get it out of my body. I did do cholestermine for about 3 months, I did not do well on it, it caused my neruo issues to get worse. I am not sure why, it just did.

I am now taking other binders, but may go back to the cholestermine once I get some more of this junk out of my body.

thank you all very much.
Posted 5/25/2014 2:06 PM (GMT 0)
There is also Welchol which is not a great of a binder but still works. Some people say activated charcoal helps.
Posted 5/25/2014 4:57 PM (GMT 0)
hi justme, i am so sorry what all you are going through, but i was happy to see you wrote a post. :)

I can relate, I too, have 2 copies of mthfr gene

(I am out of money. I have tried two very expensive lyme drs, and did not progress into wellness. It just kept me alive.

I have moved 4 times in the past 2 years. Now, i am in a place that does not have mold, but has a lot of emfs, or less than 2 yrs a bit. So i plan on moving again at some point)

I have been through hell, and i know you too

but we are strong inside, so we will get well and find the right regimne,soon & somehow, so many hugs and prayers to you.

to us all!!!

i am glad you posted, we will get through this. We made it this far.


healing wishes to you and to all of us.
Posted 5/25/2014 6:18 PM (GMT 0)
Yes, it's been a rough road, I wish I knew of something that would help us, even with all the research I haven't figured it out.

I am treating the parasites, the mold, the mthfr gene, and on antibiotics my legs just don't work.

I don't know what else to do, but I am not giving up, and I am so glad wellbeatufiul spirit you are not giving up either.

You are right we are strong, and this is a very tough decease.
Posted 5/25/2014 7:47 PM (GMT 0)
my legs are giving me trouble as well, i was sliding my body agains the floor to get around, i have my cane as well, it is like stuff is blocked in the mitochondria,

back to doing daily epsom salt baths,

one hour at a time, one day at a time, again...

but we will get there, our determination , we will well get well again, adn walk, and jump and dance and do everything we use to do!


we all are strong lyme warriors!
Posted 5/25/2014 8:09 PM (GMT 0)
You guys my heart is broken just reading your posts! I hope you find treatment soon!
Posted 5/26/2014 1:31 AM (GMT 0)
I have seen three different LLMD's , I am now self treating, and doing the best I can. Some of us just don't get well until we get to all the layers I think.

Lyme patients are very tough people, we have to be, we don't have any other choice.
Posted 5/26/2014 1:51 AM (GMT 0)
Justme how horrible! Sending my prayers!
Posted 5/26/2014 1:53 AM (GMT 0)
After I started addressing the mold issue I started improving.
Posted 5/26/2014 3:48 AM (GMT 0)
I am so sorry for what you are going through. I just wondered how long you tried the bee stings for. A friend of mine who was experiencing symptoms of lyme, seizures, and periods of being non ambulatory has claimed to have great success with bee stings. It is low cost if you have family willing to administer the treatment. I tried it for three months with her support and did not get better, but then again I am not certain I have lyme. I am certain of severe hypothyroidism and the thought of my ND is that lyme is infecting my thyroid and causing many of my symptoms.
Posted 5/26/2014 7:06 AM (GMT 0)
I've had Lyme >30 years...diagnosed 2007...messed around with some herbal stuff and some abx...got nowhere because I couldn't handle enough to do any significant killing of the Lyme/coinfections.

So earlier this year, I got a Ray Tube machine, and also am using essential oils topically. I also am on IV Flagyl (cyst-buster), and once my stomach works better again, I will restart the Andrographis and other herbs that were helping.

But I am seeing progress with the Ray Tube machine & essential oils that I was not seeing with abx.
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