Lyme Disease Support Group

Hope all is well. Things are not great with me. I have been on IV rocephin for 7 months and am also on mepron and biaxin for lyme and coinfections.

I was getting so much better and was starting to get my life back. I was able to do so much more, and even applied to go back to university in the fall.

Well, the past month has not been good. I am getting worse again, and I don't know what's going on. I am so frustrated.

After starting to get so much better, slipping back again is so discouraging. I want to get rid of this so bad. I don't know what else I need to do!

My pain is out of control again, and I need to find a way to talk to my doctor about stronger pain medicine without sounding like some crazy drug addict. It has gotten so bad, that I have literally been curled up in a ball crying at multiple times during the day. Any suggestions? I need help!

I also wanted to see if anyone has been on multiple IV's at once. If so, what combos were they? I feel like, if I have the picc line, I might as well hook up as many IV's as will help me!

I am so sorry to hear that you're having such pain..

It is so discouraging when we have these setbacks, but that's all they are, is a setback..

Please try to keep that in mind in these times..just that one little glimmer can help light your way through it..

Can you talk to your llmd about this?

To me, it almost sounds like you're doing too much, or need to mix things up a little..

I don't know a thing about abx, so I'm hoping someone on here that does can chime in..

Just know that we're here for you and that we'll help in any way possible..

You will get your life back, your body is just saying it needs a little more time to heal, that's all..

Be well and be strong..

peace

Amanda, here's my take ~ you do not need more antibiotics right now ~ Antibiotics on their own are toxic, and will cause dysfunction in your system, resulting in many of the same symptoms of the infections you have been fighting ...

Antibiotics completely inhibit your body from absorbing minerals and nutrients ~ for example, in order for your body to effectively flush out the toxins ( dead bacteria, metals, molds, antibiotics, etc ), you need zinc ~ without zinc, you do not detox ~ and antibiotics inhibit your body from absorbing zinc ...

In other words, you could stay on antibiotics forever and never feel well ....

Another VERY important part of this is the fact that the lyme bacteria is notorious for biofilm ~ Now, biofilm is not exclusive to lyme, however, the presence of lyme, babesia, etc will create an ongoing immune response in you, and the result is the clotting agent called fibrin ~

The bacteria actually use what you body produces ( fibrin ) against you ~ Now, this biofilm/fibrin matrix also is made up of most any toxic metal in your system ie mercury, lead, aluminum, etc ...

When you kill the lyme ( and babesia and whatever else is in there ), this biofilm breaks apart releasing mass amounts of mercury. lead, etc ... and if you read the symptoms list of mercury toxicity, you'd think you were looking at all the classic lyme symptoms ...

IMHO, you probably would do best right now taking some time to purge all the toxins that are in your body ~ after all, the little bacteria do not cause the symptoms ~ the TOXINS they release do ~ these toxins are fat-soluble and bind to nerve tissue and other vunerable places ... and the metals will create the same symptoms as the lyme ...

betty- I will edit and repost, thank you for your quick and thoughtful responses. It means a lot to me, that nearly every time I post, you chime in and say something!

fabajenna- Thank you for the encouragement. It was definitely needed. I talked to my LLMD about switching up my treatment. He added rifampin and flagyl, and took away the mepron and biaxin.

inkyblack-

I am sure that you are right that my body needs to detox. I know that at some point I am going to need a break from the antibiotics, but I am terrified to do it!

I have made so many improvements (other than this month, lol) on antibiotic therapy, that I am scared that if I go off of the antibiotics, I will get worse again. I never want to go back to how I was before! I will definitely add zinc to my regimen.

Also, I just saw your post banner. I was reading Ezekiel 47:12, 2 days ago! WOW! I think the Lord is definitely trying to show me something!

Thank you for the time you spent responding!

This week is a little better than last week. Hopefully, these new medications will help me! Hope all is well with you guys!

My llmd will give me oxycotin and/or percaset when im herding horribly. You have to be careful with that stuff but it definitely can help at least get some sleep!

I take long baths in warm water and Epsom salts, usually three or four hours a day. I use bengay cream when I get out, and use heating pads a lot too for pain management.

Hope some of those ideas help!

~~~My mother was just here fixing me lunch,I can't do it.

~~~She asks me many questions about me and a mutual friend's lyme patient son.

~~~I said let me read you some stories from this forum.

~~~I read MBC'S "just feeling devestated" post. Before finishing I burst into tears.

~~~Then I came to this "Discouraged" post and began reading this to her and burst into tears.

~~~So she says "My God, why do you do this to yourself? Does this help you? "

~~~"Because if they can't come here for support where will they, we, go? We are abondoned by friends,family,Drs,etc. Life is for the living,this is not living."

~~~"Do you have to do this while eating lunch. Can't you do this another time? "

~~~" If one comes here reaching for help,discouraged,devastated,disappointed,depressed,suicidal, they can't be left hanging alone. I won't let'em. I used to be more active,but I am just too weak. But it's ok because there are others who will respond if I don't get there in time. So many who care. We have each others backs. This is real medicine."

~~~"Soup For The Soul"

~~~I love you all!

~~~Now my hot soup is cold. Big deal!

~~~from my straight jacket~~~out on a limb~~~lookin like a cocoon~~~hangin by a thread~~~waitin for a butterfly~~~under the moon~~~lovey-dovey~~~Mitchell

Amanda, I'm glad your llmd switched things around for you, hopefully that will make a difference and you will feel more like you did when things were improved for you..

Let us know how you do with the new treatment..I'm keeping you in my thoughts and prayers..

peace