These herxes make me feel like I am going to die

[anonymous680]

So, I had herx tonight from Ceftin. I felt something coming on since late afternoon after a cardiac stress test at the cardiologist, so I popped an extra anxiety pill hoping it would prevent an attack.

A few hours later, here it comes.

Fever:100.3

This time started with intense pain in pelvic area and testicles, and then came one of those horrid panic or panic-like attack. I had to triple my tranquilizers this time as the first couple did very little to help me. When they happen, they literally feel like they are going to kill me, and I feel like I need E.R. help even though they have proven there is nothing they can do for me. The feeling of doom is the worst symptom I could wish for and comes automatically. I now feel mild aches all over my body, and chest is bothering me. The aches aren't so bad right now, but if history repeats itself, tomorrow I will be sore. Fever is back to normal.

To be honest, even though I tested WB/IFA CDC positive through Igenex, I was a little skeptical about really having Lyme disease with all the contradicting information and since I had no rash. I can now say with confidence that I atleast have a spirochetal infection, because these J-H reactions are like nothing I have ever felt. I saw some videos on YouTube of other people having severe J-H reactions, and it's comforting to know that I am not alone. Maybe I should video tape my reactions because people (such as friends and relatives) have no idea what I am going through.

I'm thankful to have family to help me through this journey. Without them, I couldn't do it. At first, I think these reactions disturbed and scared my family. They didn't know what to do, nor did I, and it wasn't their fault. Now everyone is so good and understanding since they've seen these episodes a few times. They sense my discomfort, and reassure me that I am ok, you just have to let this pass, and everything is going to be ok. While it doesn't feel like everything is going to be ok, the calm reassurance helps.

I'm supposed to be upping my Ceftin tomorrow AND starting Levaquin. I think I might call my doctor and ask if we can just stick with the current dose Ceftin for a while until I feel comfortable. It is obviously having a positive response, but I don't think I could make it through a more intense J-H right now.

[gorbybelle]

Nice to hear you have found a good doctor - and good for you for staying with your treatment.

I understand how bad the feeling of 'doom' can be  - all you can do is tell yourself 'it will pass' - Beat Wishes

gorbs xx

[anonymous680]

So, I am starting Cipro (not Levaquin like I said above), and not upping the dose of Ceftin for now. My doctor asked me if I wanted to stop the antibiotics again, and I said no! Once the feeling of doom and dying passes, I am fine. I can handle anything else, but the sense of doom is the weirdest symptom and the hardest on me. I am so glad I have a doctor that returns my calls and really cares how I am doing.

I am told that the neuropsychological symptoms may go away or at least lessen as I continue the antibiotics, so I think sticking with it is the best option.

[patsy10]

I would let your doctor know.  It sounds like you might have a lot of dye off right now.

[im_ticked_off]

hi kday, one of the major symptoms i have is testicle pain,it feels like somebody is hanging from them, when ever i go off my abx it gets worse, you might also want to talk to your llmd about your testosterone level, people with lyme disease most of the time have low hormones, my doc has me on a testosterone cream to help bring my level back up among other things.  lol  when i first got lyme i did not want sex at all, thats when my wife knew something was wrong with me.  make sure you talk to your llmd about that. my pain is not as bad also being on the cream.

[wonko]

I would definitely talk to your doc about the dosing.  My LLMD has instructed me to hold or even lower/pause my doses in the case of a bad Herx, I'm sure yours will do the same given the severity of your reaction.

I don't know much about the tranqs and other meds, but I would report your incident and the need to increase those meds during this event, as well.  

It took me awhile to find the right meds that worked well enough to advance me, but not give me constant unbearable Herx's.  I have not had fevers (that I know of), but I've had extreme reactions where I did feel like life was slipping away.  Thankfully, that feeling was not persistent.  I also was skeptical about Lyme until my Herx.  Then I thought, "OK, one month tops, and I'll be back to normal" and well, that also didn't go quite as planned, but I am much improved after 10.5 months.

I'm glad you have a strong family to support you through this.  It takes a lot out of us and those who stick around with us while we go through this.