I got the full body rash again. Worse than ever. Fever of 103. Herx or allergy?!?!?!

I took my morning dose of rocephin and that angry rash came back. A little while later my fever was up to 103. I felt awful. I almost thought I should go to the hospital.

I took allegra, drank a half bottle of liquid benadryl, quercetin, and 2 gel caps of benadryl and it didn't even touch the rash. Which makes me question whether it's an allergy or mast cell issue.

I called my doctor. But it was before the fever cropped up. He said to skip 2 infusions and then this evening take 2 benadryl wait a half hour and do a tiny infusion and see if it happens. That way we will know if it's related to rocephin. I went 2 weeks without reactions to it. What the heck?

So. Some of the rash was little red dots like babesia. Most of it was mottled purple red and and white. And I got stretch mark looking things on my thighs and calf. Sooooo.... am I herxing?! I'm super confused. And super super sick. I'm a little upset too because I finally fou do a treatment that seemed to be working. And if it's giving me these symptoms I can't really call that working.

Why does my body do this?! I want to heal dangit!!!!

I'm so sorry IHL. You just don't get a long enough break. Have you looked up the side effects of the med online to see if they match the reactions you have? Here's one site that's easy to read. www.drugs.com/sfx/rocephin-side-effects.html

Let us know how the change goes. I hope tomorrow will be a better day!

Rage to me is better than succumbing to this nightmare. I'm so sorry IHL. You sure don't deserve this.

As much as you & your mate are being your own advocates (as well you should), keep that communication with your doc open. Did your fever go down? x

Ya my fever has went down I feel it coming back I think I'll take some Tylenol before it gets too bad again. My throat is really sore. The rash is almost gone.

I don't know if I should do anymore rocephin today.

I've been enjoying the cooler weather for sure. I've been sitting outside alot. I'm just too tired to even sit in a chair. This is not cool. I have sweat dripping down my sides even with deodorant. Yuck.

I felt so much better yesterday. I walked around more than usual. I was happy. I was excited to get another week of treatment down. It just felt good to know that I found something that might work. So this is a huge disappointment. Maybe I'm jumping the gun but if this is from rocephin I cannot handle. Even the tiny baby doses. So lame.

I'm just going to take it easy and let myself fall apart. I'll pick up the pieces later. I have to call you doctor I'll let you guys know what he says.

I'm glad you were able to enjoy some good days outside. I hope your doctor will change things up so you don't have a repeat. (((((((((((((Hugs))))))))))))

After doing more research I am convinced this is a herx and not an allergy. High fever and all. I must have a crazy high load or whatever because it terms of my dose, this seems a bit extreme.

My body is just extremely hypersensitive and like everything else I expect this to get better with further trestment. I don't think I'm done with rocephin. I just need to lower dose and detox more.

Ah.. feels good to be a bit more level headed. I got my frustration out and now I can regroup. I feel so childish sometimes. Oh well.

Oh, yes, IHL--I would def describe u as a "spoiled brat"-lol! Your fear was well placed so do not feel bad for sounding the alarms. U have become the poster child for this craziness so keep on keepin' on. X

Post Edited (happyjo) : 7/22/2015 10:09:05 PM (GMT-6)

I called my doctor and he devised a plan to try and see if it was the rocephin.

I skipped 2 infusions. For my next infusion I'm supposed to take 2 benadryl and then infuse a half hour later. I guess if it happens again that means it is the rocephin causing it? Or it means it's a herx rather than allergy since my histamine receptors will have already been blocked?

I'm not sure. I've just had an awful time since yesterday. I'm not feeling that much better. The rash is still here although it's not as pronounced. My fever is being kept at bay thanks to aleve.

I'm having emotional breakdowns and crying a lot. It's just not like me. I must be herxing pretty good.. my son said to me earlier "when your blood melts and your bones don't break anymore can we play again?". He's 3. A very odd thing to say, but I'm pretty sure he means he misses me being healthier. It just made me feel so sorry for him. And us. Our family. You guys get how deep Lyme can cut.

I want to go back to my usual rainbows butterfly's and unicorns. I'm not good at being depressed and crying like this. I have my moments, this is one of them.

Ya deejavu I've tried herbal stuff. My mast cell thing reacts to both herbs and abx. So treatment has been all about finding what gives me less severe reactions as they are unavoidable.

I'm doing a really really good detox routine. The majority of my time and energy goes to detox alone. It takes all day long to get everything done. Ugh. I hate it but it keeps me pretty level.

I did my infusion about an hour ago and suvived! No rash or fever. So it's comfirmed. It's a herx rash. I think that confirms it anyway?

I did 1/4 of a gram of rocephin. Which may seem pathetic to some. But I'm starting at the lowest dose possible and working my way up. If that little of dose can make herx that bad a full dose would probably kill me. I do 4 grams a week at the most and most people do 4 grams a day. That was too much. So I'm back to 2 grams a week. Fine by me.

I don't think I'm done with that rash though. I'm sure it will become a new "thing" for me. I'd be naive to think otherwise. It is really miserable. The pain is out of this world. It's like having open wounds on your entire body and then taking a bath in lemon juice.

Speaking of the pain of it does anyone know if gabapentin would help since it's for nerve pain?? I think I'm going to try that next time it happens and if it doesn't help then well, it doesnt. But it would be so nice to find something that provided relief.

You guys are so awesome. This forum is my favorite place. I reached out to a Lyme support group on Facebook for insight and ended up sort of being treated like a naive whiner. No place compares to this forum as far as support. So give yourselves hugs for me.

Thank you happyjo. My son is a pretty special little guy. He pets me a lot when I can't do anything but lay down and tries to read his books to me. He's a very brazen fellow and doesn't usually show much affection. So when he does its just that more special. His new thing is to bring me water and say "here you go sweetheart drink your water to make you feel better". Ah. Melts my heart. And my blood lol!! He also calls me baby and sugar pie. Such sweetness.

I'm feeling much more perky. I got a decent meal in me and kept it down. I'm really thankful for that. I'm ready for a new day tomorrow. I'm completely exhausted. It's funny how doing nothing and laying on the couch all day can you leave you beat.

My mood has improved immensely. Thank the lord!! I can't stand myself when I get whiny. I try not to be much of a complainer, but sometimes you just have to! I had a nice talk with my guy about everything in our lives. Not just Lyme and that feels good. He really is my best friend and biggest supporter. Last night he even woke me to talk more fever reducer because he noticed I was a thousand degrees and completely soaked. Little things like that make me very safe and loved. He's my hero. He pet me and held my hand and took pictures of the rash for my doctor. Ah. I really love my boys. He's a great father too. My blood is melting again! :):):)

Anyway. I'm ready to take this thing head on again. I fall down a thousand times and never feel like getting up, but I always do. If I can do this and still be happy about things I can do anything. Back in warrior mode. Watch out bacterial b-words!! IHL is ready for the fight!!

I am so glad to hear that you ate a good meal and kept it down. Isn't that a great accomplishment for you?

Good job, you made it thru another obstacle and you are healing.

Keep up the good work ;)

You have a sweet little man IHL. I bet he will grow up to be a compassionate person after going through this with you. Thanks to you and happyjo for the "out of the mouths of babes" stories! They are so much fun at those ages. Mine are 27 and 22, so those days are long gone for me. My oldest helps me out when times are tough, though and she comes out with some funny things. She's a trooper for putting up with her health problems. I have 2 nice daughters that I'm proud of.

The funniest thing she said when she was little came up when I asked her to clean up her room umpteenth time. She look at me and said, "who do you think I am, Cinderella??". She was dead serious. I had to turn around quick since I couln't contain my laughter and I didn't want her to see it.

Any way...I'm glad today is a better day IHL. You need to get a "lyme warrior" t-shirt. :) Have a good day and get outside while it's still cooler.