something is horribly wrong I feel like I'm dying

Yes, Trav., I guess my LLMD is kind of pushing me. She's had a lot of success with her patients though. I'll just go at my own pace.

I'm wondering if I should stop the abx and do herbs only, seeing as I'm having stomach issues again, alternating constipation and diarrhea, along with problems with motility.

IHL, a nurse at the ER told me that if you have a fever of ANYTHING above 103 (regardless of the cause), you should go to the ER. If the doctors don't treat you, you have to insist, or you need to ask for another doctor. Just don't mention Lyme. If you need life saving measures, you need to do whatever you can. As I said, if that happens again, your partner should call an ambulance.

I hate going to the ER, but if I thought I was going to die, I think I would go.

Margaret

Im glad you posted an update. Thanks. I always read and follow your posts.

I need better detox methods as well. I'm feeling horrible too.

Sending you a big hug.
Xoxoxo

margaret- I have a really bad habit of avoiding hospitals at any cost. And honestly when I get that sick I'm not making responsible decisions. I hate going and being scoffed at.

Mister mike- Taking a break feels right. My body is screaming at me that it really needs a break.

Utahgal- Thank you! I hope you're doing better than me!

Revive- I'm way way way too chicken to do enemas. Even if they would really really help, I couldn't bring myself to do it. Lemons give me a rash, I've always been a little sensitive. I put some in my smoothies and call it good. I do lots of alka seltzer gold.

Opugirl- Thanks so much!!

Happyjo- My doctor said the same thing, start slow and steady. And really I did. I have some MTHFR mutations, I don't know what they mean yet. But hopefully that will yeild some concrete answers as to why I'm not doing so good.




All in all, I've just really had a hell of a time. I'm pretty sure it's a detoxing problem. The flu with a damaged immune system is serious business too. I'm doing my best to hang in there. Yesterday I fell asleep at 3 pm and didn't wake up until about 6 am! I must've been really really tired. I usually can't even force myself to take a nap. Hopefully my body did some serious healing in that time.

I don't have an appetite, so I'm sticking to fruit veggies and broth. And tea of course. I've had fatigue before, but this is like I'd like rather pee my pants than get up and go in the bathroom. It's awful. I sat outside in the sun for a while yesterday and that felt really nice. But even sitting just really wore me out. I've had to be a jerk and tell my fiances family not to come around becuase I'm just too sick to play hostess. They don't get it. At all. I have to do what's right for me though, and those little things really do matter.

I'm just sticking to the charcoal for now. I really hope that it works out for me. I can't imagine having to try more things and experiment. My poor body has just been really beaten down. Typing this is making my arms really tired. Picking up my cup to take a drink leaves my arm feeling really tired like it weighed 100 pounds or something. I've never experienced weakness like this. And it's not going away. I'm sooooo so so so so twitchy.

Thank you all for sticking with me- it really means alot. I hope you're all having good days :)

Have you tried foot soaks? that might help you without bothering you.

It sounds like you need a lounge chair outside. :) It looks like there will be rain next weekend, so I'll be getting out some every day before then...hopefully.

I really hope your break from treatments will help you out a lot. Take it easy and enjoy the sun.

IHL:

What did you put in the foot bath that made it so unbearable for you?  Did you try lots of different things or just the epsom salt?  It is clear you are sensitive to a lot more things than most of us.  Maybe you can start with just a teaspoon of epsom salt, when most of us would be ok with a whole cup?

I'm trying to remember.... I did lukewarm water with a bit if Epsom salt for sure. I may have used a half drop of lemon? I can't remember....??

I know even a shower really makes me feel bad. There is something about even cold water that really bothers me. Even when u brush my teeth my hands turn black. I don't get it..

IHL, I don't want to scare you at all. So stay calm. But, could you be in septic shock? It can cause major circulatory issues, which could explain your hands turning black. I think you need to either go to the hospital or see a doctor right away. I don't want to cause you anxiety, but the toxicity issues could be septic. If that is the case, you need to take care of it right away. It can cause major confusion, fever, chills, weakness, circulatory problems and is extremely serious. It does not go away on it's own. I really don't want to panic you, but you may need prompt medical treatment. Can you call your LLMD and ask if you might be in septic shock?

http://www.merckmanuals.com/home/infections/bacteremia_sepsis_and_septic_shock/sepsis_and_septic_shock.html

http://www.medicinenet.com/sepsis/page5.htm

I don't know either. I hope not! But maybe ask him. Something seems really off. I don't know what it is. I am worried about you. It might be a circulatory issue. Hugs!

I'm also very concerned about you. Did you tell your doctor when you emailed him the last time or was his reply to a former email? If he doesn't know yet, be sure to call and tell him or his receptionist so she/he can get the info. to him.

Do your hands turn black when they're elevated without the toothpaste?

That is weird. Does it matter what temp. the water is? Are you on city water or a well and is your city water from a well or reservoir? I'm just grasping at straws!

Hopefully going after yeast will make some big changes for you, but it would be nice if he had some clues about your hands turning black.

I just want to see you feeling a lot better.

I have well water. He said it's from circulation and put me on Heparin. Maybe it's worse this week becuase I stopped taking it? No idea. It was happening last Fall too. I don't really remember when it stated back up again....

And by black I mean very blue/gray. Just dark. Not black like space black! And no, the temp of the water doesn't make a difference.

I'm not going to start the yeast treatment. It's going to make me herx more. I need more time to recover!

I hope the break helps too. I had some x rays done a couple months ago (maybe less?) and it showed that my intestines are completely packed full. The doctor that went over them with me said hes never seen someone so full of poo. The quandery is that I go everyday- sometimes up to 3 or 4 times a day!

My doctor said that it's possible that feces is moving through the center, and the sides of my intestines are completely impacted. Which means that I'm probably absorbing nutrients or detoxing properly. So I'm going to work on constipation. I've been going everyday still, but I need to really clear myself out somehow. It's probably been like that for years, stuff like that doesnt happen overnight. Maybe that's what my body needs to be able to function properly?

And no, I've never been on Doxy. Only Azithromycin, Rifampin, and Plaquenil. I was on 2 weeks of Amox back in....October?

No he didn't. I don't want to say he's a bad doctor, because he isn't. But he's way too busy. Like most Lyme Literate docs he has way too many patients..... Like when he told me to take Diflucan without realizing he never prescribed it...

I think I need to educate myself more. I need to learn what this stuff really does to your body so I can be more vigilant as things happen to me. I could insist on being seen, he will always make time for me. Even when I go to appointments he gets interrupted by the phone or has to walk out of the room 4 or 5 times. Even when I'm there I don't have his full attention. I know his intentions are good, he is a decent human and is really invested in helping people. I feel lucky that he even remembers to check on me!

He didn't seem overly concerned about my x rays. He just said that it happens to people and it's very painful. Told me to eat lots of veggies and stay hydrated. I think he figures that treating the infections are the most important and everything follows suit once they are more under control. He treats the infections and gives the power back to your body to do the real work.

My Mycoplasma and Chlamydia Pneumoniae titers were VERY high. And he said that pretty unusual. I'm not sure exactly what that means for me, but he sighed heavily and said "Hon, you're very sick and this is going to take a long time. I have to start really slow or your body will fold on you".... So I kind of knew going into this that it would be really hard. He kind of suggested that I was one of his more sick patients. That comment didn't worry me at the time, but now it's starting to.

Knowledge is power. The problem is that my brain isn't absorbing information. I'll learn something one day and two hours later I don't remember anymore. Fleeting are times of clarity.....

For now I'm only focusing on detoxing and working on this constipation thing. That's really all I can handle right now. I got a notebook and I'm writing more stuff down, I hope that helps too. I really need my body to detox efficiently if there is any hope of me surviving treatment. At least I think so...?

When my doc says that I need to get worse before better, where do we draw the line in the sand? At what point does is become dangerous for me to continue? I don't have these answers.... and that is a huge concern right now.