trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
I am getting those Wow--I just might pass out and die right here and right now feelings within the last two days. I have changed meds and also hormones.
I changed from rifampin to doxy. and i added prometrium to my hormones. I am taking continuos birth controll pills but AGAIN I broke thru today and started bleeding RIGHT on target---If I wasnt on continuous I woulda started my period today. my body has decided to start the bleeding in spite of the added hormones. I am stubborn I tell ya. This means I will break from hormones for 5 days.
I know others have this feeling. It washes over you and it is NOT panic. It feels like someone pulled the plug. my muscles just go pfffffffffbbbbbbbttttttttthhhhh. as in deflate. and I just feel VERY WRONG. but i can NOT describe the feeling beyond that. There does seem to be some sort of chest or heart thing going on, but no palpatations, loss of breath, panic, severe pain. there is slight dizziness, but no vertigo. there is a flushed feeling to my face, but no redness.
I am expereincing severe muscle pains, unbelievably TIGHT TIGHT TIGHT muscles and nerve pains to a degree I have not felt in some time.
I am hoping this is a herx, but I have YET to feel better between herxes. I just herx, then get back to crappy bad, then herx, then more crappy bad. I havent gotten better.
looking for buddies and sympathisers or anyone who knows what is really going ON here. wanna share your knowledge and stories? thanks, trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
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In 2005 when all my sx started, I had what I call "fainting like spells" but never hit the floor. started in my head...hard to describe although I think its similar to yours. I had to eat, which meant I had to shop. I was in the grocery store one day and I felt it come over me...thought I'd have to sit in the grocery isle. Went into the bathroom for a few minutes and it passed..but still weak yadda yadda yadda... so had a few groceries and went to the check out isle. I TOLD the cashier..please make this quick I think I'm going to faint. then the papayas rolled down the belt and he didn't have the price per pound. I'm telling him in a weak voice. "forget the papayas" He then called over another check out clerk to check the price...meanwhile I'm holding on to dear life onto my cart and saying with waht little energy I had "forget the papayas" This must have played out several times...I dont know if he didnt hear me, or he was nervous or what...but finally I YELLED , with all my energy I could muster " Forget the F... papayas" That got everyone's attention, the manager berated me for my behaviour....I rarely ever swear, and am normally quiet and mild mannered...but sometimes we must be heard...
Posts: 145 | From NorthEast US | Registered: Aug 2005
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For me, it was far and away the WORST HERX I have ever had (it was also my first abx after diagnosis -- therefore my first "real" herx, except for the mini-ones I had when on abx for other things in the past)
I, too, felt like I was going to die, right then and there. I was flat on my back, unable to function, for several days -- the pain (muscles all over, and head) was just unbearable! I lasted 3 weeks on it, then had to pulse off when I started having seizures.
Doxy did a lot of good for me, though... after the horrendous herx ended, I had a bigtime decrease in the neuro stuff that had been really bad beforehand.
The herx from Ketek was bad, but Doxy trumped it, for sure.
Hope you are feeling better soon!!!! You have just had SO, SO much to deal with this past year or so in terms of health stuff!!
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
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Jellybelly
Frequent Contributor (1K+ posts)
Member # 7142
posted
Hi Trails
Maybe I can relate. I noticed you just started Prometrium. I started 3 months ago and things have been changing, some good, some real bad.
First off, my doc said it would take 3-4 cycles to set things right. I am only on 100 mgs. per day. The first month, there were lots of good things that happened. The most important is that my anxiety decreased almost with the first dose. That was my #1 priority. second I was hoping that this new thick middle would disappear. Honestly, it just took a couple of days and that started disappearing. My period still came early as it had been for some time, when I had one, which usually came a few months in a row.
Second month, I was anxious to start again as I am on for about 12 days then off. I had so much good stuff happen in month one, but it didn't do anything for the period. Then several days into round 2, I started feeling achey and had waves of nausea. They came and they went, and again I started my period early but this time got very nauseated and had headaches and was achey and weak. I also had the flu, so I thought it was that maybe.
Month 3, several days into the propetrium I again started experiencing waves of nausea....bad. Headache, achey, really feeling bad. I couldn't even get up, reminded me a lot of morning sickness. This time period came on day 29 which is more normal for me. Couple of days into it, and I still feel awful.
I am thinking what the heck is wrong. Flair or could this possibly be the prometrium, it's been a full 3 months now. I am also feeling rather depressed, or should I saw weepy. I have stuff to weep about, but usually I can just choke it back, not this time.
I did some research and found that prometrium can cause nausea, headache, body ache, joint pain, etc, etc. Do a search on prmetrium side effects on Google. There can be many.
Doses, seem to vary, official sites will tell you, 200-300 mgs a day. I found some chat rooms, where people talked about compounding pharmacies, making up even less the 100 mgs per day for them.
We already know how we differ. I am going to call my doc and get something compounded. There were many pluses for me, so I am not ready to give up. I can't stand the anxiety, so I will give it some more time. Point is, it will take more then a few days to bring you into normal, I would think. Maybe you are also getting to much. I know it feels bad, I can't keep this up for sure, so we will fiddle with the dosing.
Sorry you feel so bad, we can feel cruddy together.
PS: You made the cardinal booboo, you changed a lot of things all at once. It will be hard to know what is causing what. You may need to stop one thing, and just see how that goes, then add the other.
Posts: 1251 | From california | Registered: Apr 2005
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Cobweb
Unregistered
posted
Trails-you described exactly how I was feeling about an hour ago-I even wondered about telling someone-but then I thought -you know- if I die I die and that's it.
I don't feel so good right now-would love to just go to bed-but want to watch House with my daughter. Anyway- I know exactly what you are talking about.
Jellybelly
Frequent Contributor (1K+ posts)
Member # 7142
posted
Oh and one more thing.....Doxy was my first herx. Landed me in the ER. Blood pressure on the floor with resting heart rate of 145 and I was so weak, I could barely stand. Thought I was going to pass out, and I don't EVER pass out.
That was at full dose and didn't happen until day 8.
Posts: 1251 | From california | Registered: Apr 2005
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Trails, Yeah, I know this and it's very weird and feel incredibly wrong.
I don't know how to explain it. I just woke up this way one day a few weeks ago. I knew something was so very wrong, wronger than anything has ever been. And that sure takes some doing, ha!
I don't know what it is but do understand. It's possible the 5 days off hormones will help.
-------------------------------------------------
and now a completely unrelated story...
I have limited experience with hormones other than to have bad things happen. I realize the ones you are taking are different but...
2 years ago, I couldn't deal with what I thought were too many hormonal symptoms. The GYN put me on the lowest dose hormone patch. I used them for a month. I never hurt so bad, my entire body felt like it was swelling up and wanting to burst. I could barely bend my fingers. Only bad things happened, still had mood swings, migraines and now my period permanently, ugh. I started bleeding 9 days in and bled for 3 weeks.
I called the doc and stopped them at 4 weeks. I continued to get a period every other week for almost a year. I was personally keeping the tampax people afloat.
Previous I had been getting like 3 day periods every 25 or so days.
What I learned and remembered this happened once before at 18 when I was bleeding through months was I cannot take progesterone.
My GYN told me it woudl take a few months for my body to level back out. It never happened and she wound up doing a D and C and hydro ablation to stop the abnormal bleeding.
alright, I told you it was an unrelated story. but maybe it has some merit in showing what happens when things are introduced that our bodies are not ready or able to deal with.
I don't know, it's not like you had a ton of choices with all that's going on but if there's anything you can cut back on, try and do that, less might be more right now.
Hang in there, know I understand and am sending something... thoughts energy, can't think of the right word... your way.
ps. sorry this makes no sense
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Doxy and hormones.
Bleah.
I'm figgerin I would just crawl in bed and stay there a while.
I did that hormone thing a very brief while; right after being infected my periods abruptly ceased at 44. I didn't know why at the time, of course, so let my ob/gyn put me on those. After a few months the whole routine seemed like a lot of trouble so I tossed em.
Combined with doxy, lyme, bart, and mult- post-surgery, oh man...
For cheap advice, I got nuthin.
'Cept hugs.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Trails,
I used to get like this a lot. and i never could figure out what it was. Its just a very odd feeling, hard to describe. I used to say it felt like something was missing in my body, like i was lacking something.
I also just started prometrium and amoxicillin (made the cardinal sin with you and started both at once)
I have almost all the side affects listed on prometrium......im on it for 14 days then off etc...to try and get my period back. Im on 100mg, but based on my weight I wonder if it is too much.
Honestly, i could lay in bed all day long.
I stopped amoxy yesterday...so i can figure out which drug is causing all this crap.
hang in there!
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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honey you have been through so much these past couple of months. I felt exactly like this for months on the doxy, it is a wicked drug.
hope to chat with you this weekend b
-------------------- Daisy Posts: 122 | From at the computer | Registered: Jul 2006
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
sorry for the delay---having a hard time getting to the site.
I ended up having a really bad flare/herx last night that came on fully within the span of 30 minuites and included: sensational amounts of twitching ringing in the ears a faint feeling hot face/cold hands fever of 99.8 (i typically run 99.1) lots of abdominal pain--particularly kidney and gallbladder sites extreme emotions--crying my face off burning muscles the fronts of my thighs are on fire while the outer sides feel bruised, although neither is actually happening intense periods of facial pain low grade headache pelvic pain
After assesing everything, decided NOT to go to ER and made it thru the night on valium. took 5 mg and it affected me more than it ever has and that is saying A LOT.
awoke this morning to entire right arm twitching constantly, fingers moving side to sidde from muscle twitching and hand alseep. did not sleep on that side.
Anyhooooo---hormones and herx is my final answer. that is what I think is causing this as well as my ureteral stent, messed up gallbladder and general stress.
Thank you all so much for replying with your own experiences. It really helps to hear what others have been through and how they got thru. Yes---i changed too much at once, but I had to. It is long story....involving surgery and internal organs so I had to STOP the rifampin right away, and get on the prometrium right away.
I recall that doxy gave me much increased abilities in 2001 when i used it after IV rocephin....so I am hoping this is massive die off. PLEASE PLEASE PLEASE.
The going to die feeling came back a bit last night when things were flaring. I still dont understand what it is. It isnt even scary--as some of you said, it is like....hmmmm, maybe I'll die.....that might be nice. I dont mean to be disrespectful to those suffering from loss.
I agree that I will need more time on the prometrium for sure....to add even more variables, i have severe endo, am having it excised for the second time in 2 weeks, have only one ovary and a huge cyst on the remaining one...so my hormones are completely WHACKO.
am i rambling? prolly, thanks again everyone! hope you are feeling better, trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Hi Trails~ I've had trouble posting too. I wrote you a nice long response, and it didn't get posted!
At any rate, I too, had my worst herx on doxy...(except for the IV vanco that Dr. R gave me)...and I started doxy after many other antibiotics.
I also felt the best after the doxy. I wish I could go back on it!
Hang in there...lots and lots of hugs to you, and STAY OUT OF THE SUN while on the doxy!
Your steroid and TBD buddy...Timaca Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
Trails, You have been through too much recently. Your tone remains upbeat somehow, even when describing how you feel like you are dying.
When I first began to rife, everything feel apart. I herxed endlessly. I didn't know if I was falling apart or healing.
It took about six months but I am coming out of it. No more wisdom to offer you. You will be in my thoughts and prayers. Posts: 628 | From the south | Registered: Dec 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Trails
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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bettyg
Unregistered
posted
Trails, sending you hugs, kisses, and prayers!
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
the worst of the herx is OVER. for now.
thanks again everyone who wrote in and PMed and let me know I am not alone.
I do want to clarify that the I-am-going-to-die feeling is rather short lived and separate than all the other herx symptoms. It is NOT a result of the symptoms. It is it's OWN symptom.
It is like I said---someone pulled the plug on me. all my electrolites are GONE...all my life force on a visceral level---GONE. Like I am about to faint, but never actually do. It happens rather quickly and then just POOF goes away.
anyhow---I am back to crappy, not herxy.
my fever has come down to 99.1 as usual instead of the 99.8 throughout the herx.
As far as humor goes....it does seem like I get more silly the more sick I am. I dont feel as silly today.
is this some sort of SICK JOKE? hahahaha get it?
oh gawd....am I crackin myself up again? thanks everyone! Posts: 1950 | From New Mexico | Registered: Sep 2001
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You mentioned elycrolytes. Perhaps you are deficient in electrolytes. That could be part of why you are feeling so unwell.
When my lytes are low I feel dizzy, weak, and about to faint.
Just a thought.These are the electrolytes that have worked well for me: Springs of Life Active Ionic Nutramedix Trace Minerals Relax Energy Boost 60
If my blood pressure falls, I add salt to my water. That takes a while to work.
I know much more is going on, but this may make a difference. I just want you to feel better. Posts: 628 | From the south | Registered: Dec 2005
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Hugs to my friend..Take it easy and praying that you will soon be much better. I will add you to my reasons to march on the DUCKS. lmt
Posts: 2360 | From SE PA | Registered: Mar 2004
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posted
I'm going through the same thing right now. I'm looking for my will but it hurts to move. Was in the hospital yesterday because I was so sick. I've been in treatment for 3 years and have had a major relapse/die off. Doc thinks it wise to start IV - haven't done it before. I'm scared. I'm afraid the herx is going to be so bad that it will kill me. Others who have done IV, how have you done? Just on oral antibiotics I've had pulmonary, heart, and seizure so I'm worried it will be 10 times worse on the IV and if I do that how can I back off it because it is constant, right?
Posts: 298 | From Maine | Registered: Jan 2004
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Cobweb
Unregistered
posted
Noticed the date for when this thread started-and I realized I just finished watching House(again) with my daughter tonight- and I wasn't floating through that I'm going to die feeling-what a difference an hour, a day, a week can make.
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