Topic: Update: Mepron is killing me, had to stop. I'll never get better !!
lymetwister
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Member # 19590
posted
I completed 7 days at 2 tsp/day yesterday morning. I was in tears all day. My kids came home from school and I just cried so hard like someone died every time I looked or thought about how this ruining all of our lives.
This is pathetic uncontrollable crying I'm talking about. On top of that, I got a flu bug and coughing up all sorts of thick tan secretions.
I skipped dosing last night of everything including the Bactrim, Rocephin, and Mepron. I was aching all over and took an Epson salt bath. While in the tub, I started crying again, out of nowhere. It's that despair type crying that your life is over and you will never get well.
On top of the emotional stuff, my head feels like 1000 pounds and zappy stuff and other weird head sensations. My entire spine is aching, Left flank pain that is now a week old, but it doesn't appear to be a stone.
I know some of this is Flu symptoms, but if I didn't stop, I was fearful that I might wind up in the hospital, the floor that I would dread (Psych).
So, I'm thinking about taking a few days off due to the long half life of Mepron and restarting at half the dose. Others have posted this is no good and you'll just build Mepron resistance. I have tried every way I know to detox.
I see LLMD 3 days after Christmas. No point in calling him as he will just tell me to stop as he has done in the past.
How in the hell am I ever gonna get out of this crap if the meds do this to me ?
I was a MD state wrestling champion. I am built as tough as they come, so when I tell you I have to stop, there is no pushing myself as I have already pushed myself to my limits.
Had a fever of 100.0 last night and I've been sneezing I guess b/c of this flu, but I havn't sneezed in 2 years if I had to guess. Not sure what thats about.
AS I sit here and type, I feel like I've been run over by a train. I'm aching like I've never ached before. Treating the Flu with Tylenol and Expectorants, etc.
I keep hitting walls and so sick of it. I keep telling my kids were going to Disney World when I'm better. The way I'm going, they will be grown and married by the time I'm well, if I ever get well.
Sorry for my bleak outlook on life, but this thing has me by the crotch. My patience is thin. I know my kids love me no matter what, but none of us have a life and I'm so tired of suffering. My Nervous system is so involved in this thing as well.
God, please show me the light !!!
[ 12-23-2010, 07:50 AM: Message edited by: lymetwister ]
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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posted
Gary, the meds do that to many of us. I plowed through it. Period. It was go through the herx or get sicker. You've been stopping every time you herx and you're not getting better. Maybe it's time to change your method and deal with the herx. I couldn't even get to the bathroom without help during my first Mepron herx.
it's not fun, but you need to kill these bugs.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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lymetwister
Frequent Contributor (1K+ posts)
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I guess I'm just weak then when I thought I was so strong. I can't just plow through what I'm feeling. Another dose and I fear death.
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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posted
What are you doing to detoxify? I did coffee enemas daily (my LLMD knew). They helped immensely, but not completely. I also drank whey protein powder.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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And iamgreek is right, it's what all of us deal with. You're not going to be able to walk around and pretend you feel normal when you start meds. It's going to knock you on your butt. If you feel your life is in danger, call your LLMD, don't just stop taking the meds on your own. Don't play doctor.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
Fir Sauna, lots of water, Epsom salt Baths, Milk Thistle, Coffee enemas, lemons, Benadryl, Sometimes I take binders. I don't all of the above every day.
Coffee enemas are my first choice, followed by Epsom salt baths.
I felt 100 times worse after the bath last night which is not common for me. I usually get some type of relief from the Epsom salt baths.
My head is going crazy, feel like I'm on the "Rocking boat", way worse than normal. The aching is 10 x worse today than yesterday.
I'm not crying as much today, but the rest of me feels like death... Not use to this feeling nor will I ever get use to it.
Perhaps fighting a Flu virus at the same time is not a good combination.
Try and remember I'm raising 2 kids on my own. They are 8 and 10 and they are pretty self sufficient, but I can't afford to be in a Hospital whether it be a Medical or Psych floor. My Psyche is better today from skipping 2 doses, but the rest of me is fried.
I'll go try a coffee enema right now and report back. Thanks Six !!! I mean that too. Your awesome support. I honestly took 4 more doses of everything than I should have. I felt this getting worse and thought I should have backed off 3 days ago, but kept pushing as you suggest. I just hit a wall where I could go no further for now.
My entire family is very upset and concerned seeing me like this. They even get upset with me telling me I do this to myself. Perhaps I do, but I'm just doing what my LLMD tells me. I hope I clear up in a few days and I will try again at a smaller dose. I've been told I'm "Loaded" with Babs by more than one Dr., so perhaps this is a factor to be considered.
Again, very lost....
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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posted
That is for sure a factor to consider. Also, once you work through this, if you're at all like me, you will then start seeing improvement. I'm concerned that you stop and start on your own without talking to your LLMD. He should be in the loop on this.
It's not abnormal to feel bad after a salt bath.
I couldn't walk without someone to hold onto with early babs treatment I was so off balance. Aching is bad, bad, bad. In my experience, I think the crying is another way for your body to detox. I always had crying spells at the start of a herx.
My biggest point is, talk to your doctor, don't just stop and start the meds on your own. Your LLMD will be able to tell you whether it's better to push through or stop. I had to push through, and once I did, I saw improvement.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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glm1111
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Member # 16556
posted
I don't agree with pushing through these herxes if you're hitting a cement wall. I have been there, and when you know you can't go any further, you have to stop. You can't push through cement.
I had babs very badly where I had air hunger couldn't take a deep breath for 2 yrs. I never took Mepron. I refused it mainly because of the cost. My babs symptoms are gone from doing the salt/c protocol and lots of antiparasitic herbs. I really think the pace not race approach can work very well.
Gary, I was afraid if you added Mepron or anything else it would push you back from doing the salt/c and herbs which you seemed to be doing well on. You were herxing, but not as brutal.
You were able to go out and do some things and take your kids out. I hope you reconsider going back to what was making your life somewhat bearable and killing the infections at the same time.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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Gary: As one who's been misdiagnosed for decades and is now getting better, I'm telling you please know there is hope.
Lyme/co. can cause severe psych. symptoms, and herxing can manifest as black depression with crying jags and even psychosis with delusions and hallucinations. Both my parents have had psychotic episodes that I now know were caused by untreared Lyme disease.
I urge you to see a good LL psychiatrist. I myself was put on Paxil to miraculous effect. Yes, my Mepron herx was wicked, pain and aching deep in the bones, seemed like the flu without the fever, but I kept going. I believe Paxil is what kept me glued together. After 6 mos, the Mepron herxes are much milder, and I'm going to the gym 2 or 3 times a week for a good workout (strength-training, not cardio).
A few weeks ago, I actually moved ONE TON of bagged wood pellets from my driveway into my house without assistance and with an ARTIFICIAL SHOULDER JOINT (joint ravaged by Lyme and repeated steroid injections).
Psychiatric herxes are REAL. My LLMD told me yesterday he has seen a patient become psychotic during a herx, and that the psychosis eventually disappeared with continued antibiotic treatement. A dumb shrink wanted to institutionalize the patient but my LLMD kept telling the shrink it was a temporary psych herx. He was right!!!!!
Hang in there Gary. You will regain your physical and mental health.
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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quote:Originally posted by glm1111: You were herxing, but not as brutal.
You were able to go out and do some things and take your kids out. I hope you reconsider going back to what was making your life somewhat bearable and killing the infections at the same time.
Gael
I can agree with this. I'm all for things that help us progress. Stopping and starting and stopping and starting again is not a good thing though. If you want to go the hit them hard route, you need to work through it, or at least be working with the advice of the doctor who has you on the meds.
When I was waiting for the Bionic to work on the babesia, I was drinking tonic water every day to help with the babs symptoms. Fever Tree or Q Tonic (Fever Tree tastes a thousand times better than Q Tonic) have natural quinine. They are small bottles and I'd drink two per day. It was hard to keep my kids away from the Fever Tree, LOL.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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nefferdun
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Just a minute, there is a warning on here somewhere about the serious side effect Mepron can have of suicidal depression - the ultimate pits of despair. Be careful. I think backing off is a good idea.
I also got a cold when I started Mepron and it was hard to distinguish the misery of whatever I had with the side effects of the drug or a herx.
I think it is ok to back off until after Christmas when you can see your LLMD. After all it IS CHRISTMAS!
Take the drugs that do not knock you down so much and enjoy your family as much as you can. You can get back to business in two weeks. Maybe a change of drugs will work a lot better for you. If you have Bactrim DS and zithro, that will help keep it under control until then.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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TerryK
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I know you will see your doctor in a week but given your current condition, please call and at least leave a message letting them know what has happened and that you are stopping meds.
It is our responsibility as a patient to make sure that we are not putting ourselves in danger with the medications that our LLMD's are prescribing. It's their neck on the line too!
Personally I would STOP if I were in your situation. The flu is increasing your cytokines + increased cytokines from your treatment + increased cytokines from the illness. Too much can be life threatening so stop when you must but at the same time call and at least give your doctor the opportunity to guide you with their expertise. At your appointment, talk to your doctor about what he would like you to do in the future if/when this happens again!
Gary- I know how it feels to think you are never going to get better because you have been so very ill for so long and the herxes are so brutal. I still feel awful off and on but I used to feel horrific 24/7. It gets old but you will come through it. You will get better!! Make that your mantra.
When you start to feel so ill that you think you might end up in the hospital or die, STOP!!! Call your doctor!!!
You can do it. Slow and steady.
Terry I'm not a doctor
Posts: 6286 | From Oregon | Registered: Jan 2006
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You've received so much good advice, all I can add is that I will pray for you and your children today.
Posts: 246 | From south florida | Registered: Mar 2010
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lymetwister
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Thank you all for your support. Things are easing up a bit today.
I gotta kick this flu, thats for sure. Will call Dr. and make him aware of situation.
I will add one other thing that I left out that maybe some of you may or may not be able to relate to.
The entire time I've been sick, not once have I been able to lay and bed and just sleep it off.
Because I have such extensive CNS involvement, my body has always felt like it has been in a state of overdrive.
Therefore, there are no naps. I can't even lay in bed for long because I can't sit still half the time, or I'm gasping for air.
It makes for a very long day, one that is exhausting.
Anyway, thank you all again for the very much needed support. I will keep marching along, fighting as I have been all along.
Gary
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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You even sound calmer, Gary. I'm glad it's letting up.
I had very bad insomnia, but severe fatigue and weakness, so I'd end up in bed all day, but with no sleep. The only time I slept is when I took heavy duty drugs to make me sleep. It's terrible not being able to sleep it off.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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I agree with stopping when things seem like too much. Hubby had 3 psych admits early on before he got any antibiotics. Because of that I have never pushed him med wise. He is somewhat unique in that he never had typical herxes -- rather he had a reaction to every single dose of meds for years.
We eventually overcame this by doing low dose meds and gradually adding in meds until he was treating all 3 of his infections at the same time -- was on 5 meds at one time plus full dose on Buhner herbs.
Yes this route took a couple of years -- but now he does have a clean bloodslide for bartonella -- which I think is accurate. Now we just have to deal with the lyme and babesia. But he can tolerate multiple meds at very high doses.
I think it depends greatly on what part of your brain is infected or impacted by these infections.
I also think it is extremely important to correct any nutritional deficiencies as well.
Detox is not always the answer. If you have a severe brain infection you cannot detox that. If your liver is overloaded then that is different. And I am sorry -- but I don't think detox can do much to replace missing nutritients or even to balance neurotransmitters.
If you have episodes of encephalopathy (mental confusion) or severe emotional issues then you need to be very cautious not to tip the scales.
As Gale said -- if you can stick to a program then you will eventually get there.
But do keep in touch with your docs office.
Happy Holidays
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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djf2005
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DETOX DETOX DETOX. YOU WILL NOT GET BETTER W/O IT.
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
Like all the above mentioned, don't just push through it. Get on the phone and keep calling your doc until you get through.
You can't push through that. I've been there, in that hole staring at a whole bottle of sleeping pills. It's not you, it's the drug
I also have children 8 and 10. Are you on any antidepressants? They saved my life. Also for the constant anxiety and inability to sleep, may be something to calm you down, periodically, I use klonopin- it takes the edge off
Hugs and Prayers
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Tammy N.
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I finally read this post today. I am so sorry for all you are going through. Some good thoughts were shared above. I wish I had further words of wisdom but I don't. Just wanted to send you a note with caring words. You will be in my thoughts and prayers. I hope the right answers come your way to bring relief and healing.
Wishing you well, Tammy
Posts: 2238 | From East Coast | Registered: Jul 2010
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lymetwister
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Member # 19590
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UPDATE: I'm 48 hours since my last Mepron dose. One more day and I'll be at the half life.
Whatever the Mepron is doing, apparently, it's still doing it. I don't see restarting this med even at a low dose, but perhaps if I come out of this bad place I will reassess the lower dose option with my LLMD or try Malarone.
I thought I might be clearing up a bit last night, but woke up this morning at 6:30am with the worst Migraine I've ever had.
I was having nightmares during my sleep as well.
Trying some caffeine right now, but thats not the only problem. I feel like this stuff binded up all of my Serotonin and just sucked it right out. Perhaps this is why people get depressed from this drug.
My True Flu symptoms persist, coughing up thick tan secretions, feels like a bronchitis if not for the tan secretions.
Body aches are not as bad so far, but this drug is brutal. It's messing with my entire nervous system.
Like Gael said, there is no pushing through a cement wall, which is exactly what I hit. I can't wait to have this out of me and see some sort of returning baseline. I hope this isn't it !!
Bea, I agree with you about not being able to detox the brain. I'm trying so many things on this end by the terrible head symptoms remain. One thing is for sure and that is that Mepron sure does cross the blood brain barrier.
The utter agony is just too much !!! I can only say that I know this is all from the Mepron and I'm banking on a few more days of misery, hoping and praying that I will get back to where I was, which wasn't great, but tolerable.
Feel free to cut/paste my experience in the Mepron Blues thread.
How I got this so bad, I have no clue. Why I have trouble with most meds, I have no idea. I'm obviously infected with a huge load of bacteria. I guess when it's in a bad area of the brain, you pay that much more, who knows ?
Thank you all again for your kind and supportive posts.
I will keep you updated.
Gary
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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Not sure if your flu symptoms started after you started on the Mepron? If so, it is possible that it is not really a cold or the flu but herx symptoms from the babesia.
I had forgotten that babs hangs out in the lungs. See the comments Dr K from Clongen made to hubby at the post below.
posted
Gary, thinking of you! Hope you are feeling better soon. Drop me an email when you feel up to it. Sending get well thoughts.
-------------------- gatorade girl
"I still have Mt.Everest to climb, but I have traveled across the world and arrived at the mountain". Posts: 633 | From baltimore | Registered: Mar 2010
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