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Posted 11/27/2014 4:40 AM (GMT 0)
My entire body aches. Constantly. Relentless... pain. It let's up but never fully goes away. And then comes in full force right when I really don't need it. It's like it knows that I want to do stuff so it prohibits me on purpose.

Nothing helps. Not narcotic pain meds, not heating pads castor oil packs baths.... nothing. Nothing works. Ugh.. hate this crap.

I've literally only been diagnosed for a week and I'm ready for it to be over. My doc said today she doesn't really have patients as sick as I am. I just don't understand.... I don't know why this had to happen in the first place. The laws or guidelines or whatever just have to change. They have to. People shouldn't have to go through this.

Any tick bite any of my family members have from now on are going on 6 straight weeks of antibiotics. No matter what. I'm lucky I have a doctor willing to do that. And I shouldn't be lucky for that. It needs to be standard procedure. Ugh...

I can't wait for this all to be over. So I can do something about it.
Posted 11/27/2014 8:04 AM (GMT 0)
That's the thing to do. Fight the Lyme in your body and then when you are well use all that energy to fight Lyme for everybody.

Sorry you are in such pain. This experience will make you a stronger and better person, just hold on!
Posted 11/27/2014 10:44 AM (GMT 0)
Sorry the pain is so severe, and relentless.

Have you tried Ice packs on areas? This works for my back/spine issues/pain. Only thing that really does.

Have you heard/tried coffee enemas? This helps for the all over pain.

It sounds gross, but it really works quite well. The science behind it is that the coffee goes into the intestines/colon area, and this is where so many toxins go but don't get expelled as readily/easily. The coffee will leach the toxins into itself, then get expelled. This results in many great results, pain relief is actually top of the list! Proven by cancer patients, too!

Using good quality organic regular coffee is best, but use what you have. The caffeine does not get absorbed into the stomach aread/blood, as it isn't near that area. The amount of caffeine that might be absorbed has never been an issue for others that I have read. Dr. Max Gerson, deceased, who proved diet alone could heal cancers/tb and others illnesses, came across the coffee enema's ability to remove high loads of toxins, thus resulting in proven pain relief. For interesting information, I suggest researching both, the coffee enema and Gerson, amazing info.

I've tried this with very good results. Now I need to purchase an enema bag, as I had used disposable bottles, and that's not for long term use. One or two needs, in a pinch, they work great, though. I was desperate, well worth having all on hand.

I sympathize with the tormenting, constant and non-stop pain.
It's beyond words all that one deals with having these tbd.
Lifting up with good thoughts and prayer of mercy and grace filling you to overfilling.

I pray you are able to find a place within that provides you peace,
and sustains you throughout your journey to health.
You deserve all good things. You really do.
Posted 11/27/2014 11:12 AM (GMT 0)
Hi IHL

I understand what you are going through. After over a year and a half of full body pain, trying all the painmeds I could (with no help, just turning me into a zombie), I told my dr he needed to come up with something asap cause I couldn't bear it anymore.

He then put me on LDN (Low Dose Naltrexone). How it works in short: When you take LDN at bedtime, it attaches to opioid receptors in the brain and in all types of immune cells, which temporarily blocks endorphins from attaching to them. This signals your body to increase endorphin production, the body's own opiate. (This is what it does on pain level).
It does not work as well for everyone, it is partly genetically determined, but it is worth giving it a try.
You can find a lot on the internet about LDN, there are a few good facebook pages.
www.ldnresearchtrust.org


I bought a bottle of magnesium oil, i mix it up (50-50) with a good massage oil (because it stings a bit, maybe try it on your arm the first time) and hubby gives me a full massage with it. I feel it helps with the pain, especially the day after.

There are also natural supplements that help with pain: Curcumin and Boswellia. I also read about Astaxanthine.
Many of our members use them with good results.

I hope this will help...

Hold on, it can get rough, but some people on here that were very sick made remarkable progress and got better.

MarieLS
Posted 11/27/2014 6:04 PM (GMT 0)
I just want this process to go by really fast. I'm giving myself 6 months and by then I hope to have more days out of bed than in it. My poor son can't u ser stand why his mama doesn't want to be around him... it breaks my heart..

I'll lay here in bed with a pillow over my head for hours just begging the universe to make the headache let up. Any sound light or movement is pure torture.... for a 2 year old it just doesn't make any sense. I wonder if sometimes he thinks I don't love him because his dad will constantly come and take him out of the room.

I must have pressure building up in my brain or something. My pupils being unequal sizes during an attack like that can't be a good sign. One will be the size of a poppy seed and the other is fully dilated. My face will swell up and my whole body turns red. It's so exhausting just to even lay here I'm constantly sweating and hot then cold..

My llnd is referring me to a pain management person. I can't wait to get some better pills. I've been against pills my whole life because my dad is an addict. But I just can't live like this. I'd rather get strung out on pain meds than go through this pain over and over again. I'm hardly a part of my family because of pain. I can't sit on the couch a watch a movie with them like we used to every night. I can't stand being in my body. I wish there was a pill to take that would allow me to leave it sometimes.

I just need something that provides relief for now. Until this passes. I can deal with the problems that come with it as they arise. If they even do. I'm hoping my awareness of the scary part about pills is enough to keep me safe from the trap they can force on you.

Anyone here have experiences with taking pills that are addictive? I've taken plenty before. Percocet and vicodin anyway. It's never hard for me to not take them when I'm not actually hurting. I like to be clear and present. And the "high" that comes with them is not really a feeling I enjoy. I've noticed when the pain really is that bad you don't get any of that "high" at all. I've taken 3 Percocet for that crazy headache and never got high, but I could fall asleep. And when I woke up a couple hours later I felt a lot better.

Any thoughts are appreciated. I'm probably over thinking this. It's scary because of the way those stupid things have ruined my childhood. I don't want to do that to my son. I don't think I ever would, but isn't that what they all say?
Posted 11/27/2014 6:58 PM (GMT 0)
I hear you. My total body pain was real bad '04-2008. But I didnt know it was lyme then. That LDN sound like a good try. I had vicoden once, not good. You might as well be drinking gin, it was no different.

I have asked on a few posts about body pain. Every post you will learn something new from someone, where always hoping the magic bullet will be found, maybe some day.

What got me to a better point (somedays are still bad though) befor ABX took a real long time. I'm a do it your selfer (most of us are know right?), so I learned Trigger point releasr, Active Release Technich , and John Barnes Myofacial release in that order. That saves me about $500 - $1000 per year. But you need to be creative to reach areas on your own body. A thera cane, tennis balls, kids inflateable 4-5" balls help with this. You can find this kind of releife for specific body parts on u-tube.

I also purchased an LG ultra sound for $100 on line for my tendons. I like it, it does do something for tendons.

After 25 years I think I have some damage that will not self repair after lyme is dead. So I have to fix my muscles, which is an ongoing process.

I was in less pain after one of my longest ABX plan, but as some one, I went backwards after that (not completely thogh).

Of all the suppliments for this , good old magnessium seems to help the most. Still looking for the magic bullet myself.

There was one muscle relaxant that worked better thn some without drwsyness -metatxalone (? spelling). Its not coverd by my inc now and is $100, do I ditched it.
Posted 11/29/2014 5:23 AM (GMT 0)
Omg! I'm not crazy...3 years of all over excruciating body pain...I can't even begin to tell ya everything im on to tolerate a day....and I'm in bed more days than out lately...lyme treatment started about 6 months ago when diagnosed with it and babesia duncani...Some days I pray it would just end...I dont know how I will make it thru another minute or tolerate another ounce of pain...and somehow someway...I freakin amaze myself...I've been 100% successful so far...how the heck I've survived it..I have no idea...because wow..living hell isn't it? We are some strong lymies!! We've got this xo sending strength 😊

Post Edited (LilLymFighta) : 11/28/2014 10:28:29 PM (GMT-7)

Posted 11/29/2014 6:02 PM (GMT 0)
I like your attitude lillymefighta! Nice name too! It is incredible what we go through. Seems like we should die at some point but never do hahaha. We all have to keep fighting!
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