treatment just got so much more complicated today. I've got a tough road ahead.

So I went to try the clindamycin iv switching from rocephin due to the rash I've been getting. And guess what. I got the rash anyway. It doesn't matter what I take apparently, it's going to happen anyway. It's from the mast cell issue I've aquired.

They pushed a ton of benadryl through my iv. And now I'm going to have to do that at home before every infusion. Iv benadryl makes you feel TERRIBLE. I felt drunk. I was slurring, clammy, stumbling around... ugh. I'm not looking forward to being a drunk zombie 5 days a week.

It doesn't take the rash away. But it does help with the pain and itching from it. So I have to be really careful about dosing otherwise I could end up anaphlyaxing. I don't have a safe option anymore. It's either take stuff that make my mast cells degranulate (allergic type reaction) or stay sick with lyme. Herbs do this too. I can't even take tumeric anymore.

At least with the picc line everything is bypassing my digestive system. So that's a plus. But it's very unfortunate. The reaction is so extreme it seems counterproductive. But I have to start somewhere, and I don't get to choose how sick I am.

I'm dissapointed obviously. But it is what it is. I can do this. I have to. It just really bummed me out. This is a terrible symptom to deal with. And it's scary knowing that I'm putting stuff in my body that doesn't agree with it. It could prove life threatening so I have to be really on the ball. I seriously doubt I'm going to die, but I do have to take the necessary precautions and that's just a fact.

Thanks Antonio.

The over the course term stuff was way different for me. In the iv for its pretty crazy. I think they ended up giving me 150 mg. Which is a ton. And guess what? I still couldn't sleep!!!! The over the counter pills are usually 25 mg. I can't believe that much in my iv still didn't make it go away.. oy. My fever doesn't respond to fever reducer either. Very weird..

I'm growing concerned with how my body is reacting to everything. Something just doesn't feel right to me. I don't know if that just me being crazy or if my intuition is trying to tell me something.

I'm confused. I pretty much cried to my guy last night about all of this. Begging for his opinion on what he thinks is happening to me because I don't trust my own judgement.. this sucks. Just have to keep getting through days. Getting through moments.

Ya I'm seeing an llmd. The problem is finding things that I can tolerate. It's been slow going finding things that I don't really mess with me.

My doctor is really good actually. I've been in treatment for a year now. He's had me on treatments for all my coinfections. He's had me on treatments for all the different forms.

I just got my picc line and we don't want to over do it. Slow and steady wins the race. I'm sure we will be adding things in in the coming months. I have a mast cell issue that could prove life threatening so we have to be really careful is all. I'll be on both drugs simultaneously now. I just don't want to add them together right off the bat.

You'd be surprised at what I've already been through that got me to this point.

Ya I was on just rocephin just enough to keep the bugs from replicating. Purely for symptom relief. Right now I'm only barely 95 pounds from puking. So my doctor is really only concerned with fixing my vomiting until we try to add more in. That's why I have the picc now. My digestive system is screwed and needs some time to heal.

I haven't improved at all. With the crazy rash stuff going on I'm completely miserable in treatment. I just have to keep plugging away and getting through the days. I figure in a few months I'll be in a better spot. I think my stomach is getting better it's just so gradual it's hard to notice.

I really.need some of this stuff to turn around. Mentally I'm on the brink of a meltdown with all the let downs. It's so dissapointing to try so hard and make yourself so sick for nothing.. I'm exhausted always trying to stay so positive. I make a lot of jokes to ease the tension. But this is getting to the point where I'm not able to laugh at it anymore. Well. Maybe just yesterday and today. There's always tomorrow!

(((HUGZ)) IHL.... Keep on truckin' you are a champ, and doing all you can. I know you can do it. So sorry this is so tough- been really rough on you.
xx~ Ali

IHL- It is really good that you think your stomach may be improving. Try and concentrate on that. Maybe if that improves and you can gain a few pounds that will help with everything. I think your body really needs a little fat and once you can do that you may feel a little better!

I am battling that with my son. He is 15 and so skinny. He is constantly getting sick and it is really hard for us. My hubby and I feel like if we could get some meat on his bones he would be able to fight these colds and flu's better. I have been feeding him bone broth with organic butter and Great Lakes protein powder. This is easy for his stomach to absorb and gives him lots nutrients he needs. You can also make jello out of the Great Lakes powder and juice. If you tolerate dairy you could add some full fat whip cream. I am on a Candida diet so that sounds so good to me. Also, if you can tolerate dairy you could make home made yogurt made with whipping cream. That has a ton of fat and calories.

Are you still vomiting? are you able to hold some things down. I think everything revolves around the stomach so if you are making progress there, you are making progress.

Good luck and stay strong. This will pass and you will be such a strong person..((((hugs))))

As tough as it is now, you are doing so much better now than prior to the diagnosis of what was causing the horrible headaches and pressure in your head.

I can imagine it seems like forever since you have felt decent yet you are better know than you were a month ago, thank goodness. You are an incredible fighter!

Cocculus is commonly used for motion sickness and works well for that, so it's interesting that it's helping you. I'm glad it is! It's much easier on your system too.

I'm sorry your battle continues to be tough on you, but I hope and pray that it is going to help you move ahead and have less complications to deal with.

My daughter has often craved food that her body needs. She'll look up her cravings and find out from a blood test that she is low on something that food will give her, so it has been interesting to see that and I'm proud of her for paying attention to that and learning from it.

Take it easy.

Yes, add butter to EVERYTHING you can! you said you wanted to add butter to your coffee, well do it!!!

It's easy and quick.

The Bearded One said...
Going to shoot you an email.......

Can I contact you somehow bearded one. Thank u

Welcome to our community, Imtrying!

I wanted to let you know that this is an old thread - and The Bearded One hasn't been on the forum for over a year...so I don't know if he will see your post.


Is there something we can help you with?

IHL posted recently:


www.healingwell.com/community/default.aspx?f=30&m=3695967