I'm exactly at the 72 hour mark being off my crazy 7 days of dosing Mepron 750mg 2 x day.
So, I'm at the half life. According to the Mepron blues thread, after stopping for 2 days your mood comes back.
The half life is 70 hours give or take, so I should have at least half of this out of me.
So, I guess I still have half of it in me and I still feel terrible. Perhaps it's a Herx, but I'm having terrible air hunger again this morning, I feel like I've been hit in the head with a 2 x 4. My nervous system has gone haywire once again. As of last night, I was crying my eyes out all night long. I had a big crying bought about 15 min. ago as well.
I have done so much detox it isn't funny. Lemon water and lots of water, coffee enemas, epsom salt baths, fir sauna, and binders. Also, liver support.
Sitting still, I feel like I'm rocking up and down on that same old boat. Not sure I even have a nervous system anymore. It just does what it wants. So far this morning, I have taken my Klonopin, 0.5mg of Xanax, 25mg of Liquid Benadryl, and 1/4 of a 5mg Percocet, plus my beta blocker, and neurontin.
I see my LLMD in a few days. Something has to give here. I am alive and breathing, but thats about it.
The Autonomic Dysfunction has taken over my body.
I'm sure he's gonna want me to try Malarone since this has been such a terrible experience for me.
I live for my kids as I'm all they have. I guide them with this and that and I'm here for them as much as I can be.
Now they are off for 10 days for Christmas Break. I can't do anything with them, even a puzzle in the house would be impossible for me. My parents think I've become Lyme and I have, but how do you get away from it when it's going at you 10/10 24/7. Make that 17/7 as I am able to sleep for about 7 hours per night. Even then, my dreams are usually nightmares.
I've been told that God doesn't give me anything that I can't handle. Well, I'm still alive, so I guess that part is correct, however, not only has my life been robbed, but that of my kids as well. I try to find the positives in all of this, but just can't find any. Dying cancer patients get more comfort and relief. I can't seem to find any. This disease has a mind of it's own. I'm finding it very difficult to cope with all of this as every symptoms is a 10/10. How can I not become this disease if I can't get these numbers down ?
Not looking for pitty here, just venting.
Posted by nefferdun (Member # 20157) on :
So sorry you are still feeling so horrible. Being Christmas makes it all much worse. I hope someone is there for you that understands. I have no idea what might help you right now but hang in there. Besides "God won't give you any more than you can handle", remember, "This too shall pass". You will beat it and it will be behind you.
Posted by Shahbah (Member # 28735) on :
lymetwister, if your symptoms are from babesia so it's a blood problem not nervous system, although of course blood circulation is key to a healthy nervous system... Maybe you could try massage, I tried craniosacral therapy yesterday and it did help a bit. I think B12 also helps the air hunger.
Posted by momlyme (Member # 27775) on :
Are your parents coming to help for Christmas?
I wish there was something useful I could say...
Drink lots of water with lemon... and force a smile from a comfy couch or recliner.
Do your kids understand?
Posted by phyl6648 (Member # 28522) on :
I so feel for you. I wish I had an answer but all I can do is relate to how you feel. Especially I am alive and breathing also the family issue.
I was dx on a month ago but have suffered for 10 years. I am not sure about meds or anything.
So sorry, I will say a prayer for you..
God Bless.
Posted by lymetwister (Member # 19590) on :
No one is coming for Christmas as I'm Jewish. Been doing the Lemon Water and other detox as I stated.
I need a new head or brain....
My family avoids me as they can't stand to see me suffer. When they come over, I can't enjoy their company and all I do is cry.
Great life... It's like being thrown into solitary confinement or the hole as they say in prison, then sending in an interrogator to torture you for information.
Again, I'm not looking for pitty or trying to complain.
My kids understand as best as they can. I have shown them the Mepron blues link and explain to them that the crying is a "Symptom". I think they get it, but they see their dad suffering and this will have an everlasting impact on their lives.
They know I'm doing the best that I can and they have everything that they need except their DAD (cry as I type). I miss them so much ! All I want to do is take them to a movie or do something fun and smile while doing it instead of pushing myself and being in agony the entire time faking my enjoyment while hoping I can get home soon and lay down.
It's like dangling candy in front of a child. My kids are right here in my house every day. I'm raising them on my own. Their mom is elsewhere and hardly involved with them, so it's just us 3. So, they come in my room 20 times / day and say, "Dad, how are you feeling ?". My answer is always "hanging on" or "not too well". I always tell them that I will beat this and never give up, but I fear they will be grown and off to college, married with their own families if and when I ever get well.
I just want to take them to Disney World !!!!!
Posted by sixgoofykids (Member # 11141) on :
Gary, maybe even the detox is pulling too much out. Maybe just binders, fiber, and lemon water is the right thing to try to get the toxin load down. Some detox methods pull out more toxins, like FIR sauna and coffee enemas, sounds like maybe you should just absorb what's already floating around.
I think your kids are seeing you put up a brave fight. You are a good example to them and they will remember how you never gave up. Try not to think about what you're missing, but enjoy what you can do.
Posted by seaweed brain (Member # 29547) on :
I'm so sorry about your reaction to mepron. My dr said melarone is more helpful for some people. Or do you think going back to the salt/c is a good idea?
I admire you handling your children on your own with this disease. Even though you don't celebrate C-mas your children are off school for a long break which is always difficult. Can you parents or other family members just agree to help out? Maybe take the kids out so they don't have to see you suffering.
I'm newly dx but have been living with what I thought was fibro and cfs since my son was born. I made a list for him of "activities we can do when mom is feeling sick"
watch movie together (we have a portable dvd player if I am not well enough to sit up in living room. I set it up on my bed and we have cozy movie time.
my son reads to me
I can watch him build Legos and make comments from laying on the couch.
have son put on a puppet show for me
play hangman
board games
It sounds like you are too sick right now to do those but hopefully when you are having a better day you could create a list of ideas with your kids. My son still doesn't get it. He actually refuses some of the things on the list! He knows I am sick but tries to tell me "no mom you are feeling good let's play". Or he asks/demands over and over "play with me!" It is really hard.
I hope you feel better soon.
Posted by Sheryl777 (Member # 17804) on :
After my bad reaction to Mepron, my LLMD put me on a teaspoon once a day for several months so as to get the bab load down. Then I went on twice a day. Not as miserable.
Posted by Jane2904 (Member # 15917) on :
So sorry for all you are going through. I hope it passes and you find relief.
Posted by Shahbah (Member # 28735) on :
How are you feeling today?
Posted by lymetwister (Member # 19590) on :
6 Days off Mepron and everything exactly while I'm writing this and I just woke up so far with the usual.
I'm shaking, short of breath, my eyes hurt, right eye is half shut, my head is killing me in the back of my head over those 2 notches in the base of the skull.
My brain feels like it is shaking inside of my head. Anxiety is topped out.
I cried 20 times yesterday as I have now every day since the Mepron hit me. LLMD says it's like I hit a hornets nest. Agrees to stay off everything and treat symptoms until this crap resolves.
See LLMD Tuesday to re-evaluate all of this.
I swear I'm being tortured in about 10 different ways. I keep trying to detox, but I'm not seeing results. Havn't cried yet today, so we shall see.
Gary
Posted by apljack (Member # 14233) on :
I am so sorry. Kids are pretty resilient so while you're concerned, it's just a blip for them.
Posted by iamgreek (Member # 29517) on :
A Macrobiotic diet (strict) will give you relief , I struggle with the
same symptoms and have found this to help a great deal.
Stay away from heat, hot showers and saunas for now. It sounds
like your symptoms are pots. Magnesium is your friend. Also
Hymalain Sea Salt. Get off the bete blockers. Also start
visualizing the color Green or blue throughout your body. Do you
remember what it felt like to be healthy, Feel it.
I can relate and the thought of death was my only escape, but I
promise you, I have a strong premonition that you will be
improving in a big way this year. Trust me pal ! Love to you and
your family. YOU ARE NOT ALONE
Posted by nefferdun (Member # 20157) on :
I hope the LLMD has some answers. Just want to let you know I think about you and send WELL wishes your way. Maybe your kids could spend some time with their friends to give them a break.
Don't give up on Disney World but if you can't make it - believe me is is not as big a deal as the commercials make it out to be. It was my kids only vacation and they were not too impressed. Lots of LONG lines waiting forever, even in the off season, and then the event or ride is just not as great as the expectation.
Your kids will have better memories of playing games together, reading stories and transporting themselves using their imaginations. When my adult kids talk about the happy times in their childhood it never includes DW.
If you want to give them something now, maybe a kitten if you don't already have pets. They are easy to care for, really cute and wonderful companions. My adult children's happiest memories usually include their pets.
Posted by norcal (Member # 29829) on :
Hi Gary, Iam newly registered here. I have been following some of your posts and you moved me to register so I could lend you some hope. I have two kids 10 and 12 and have been dealing with babesia for 3 months. Alinia and a-bab have been my current protocol.
l I know that mepron can be a bad experience as i was on it last spring till my liver called it quits.
It sounds like you are dealing I with alot of emotional issues as I am.One of my biggest regrets is not being as present as I know I can be for my kids.
Luckily their mom can be the glue that keeps it all functioning until I am better. That being said I still deal with severe sadness on a regular basis as I am going through treatment.
My girls have seen my cry a bunch of times ,"pathetic crying" to quote you. They let me know it is okay. I am going to be tough again some day soon.
I wanted to say ,I feel your pain, you will get well, and to keep your chin up!
Posted by nefferdun (Member # 20157) on :
Gary, when you see your LLMD ask about IV glutathione for detox. It is so powerful many people experience relief in minutes.
Hope you get some help tomorrow.
Posted by lymetwister (Member # 19590) on :
Thanks again for all of the suggestions everyone.
I feel like crap still, the emotional stuff is lifting a bit.
I went to bed last night and felt like I was falling through my mattress.
Every morning when I wake up, my head is going nuts for like the first hour. My anxiety is so high, I'm out of breath, I feel all of this craziness in my head, and I'm like "here we go again". It gets old quick.
Perhaps going from laying for about 8 hours to standing causes the shift in blood flow to create these initial morning reactions. Don't know what to make of it all.
Will address all of this again tomorrow.
Gary
Posted by iamgreek (Member # 29517) on :
Do some research on pott's disease. It's common in Lyme land. I've finally defeated most of it through treatment.
Posted by nefferdun (Member # 20157) on :
I have the anxiety too which confused me until I read it is connected to babs treatment and mepron. Good luck.