posted
I went to see another LLMD at the urging of my family because my current LLMD herxed me so bad. All symptoms came out that I didnt realize that i had and I thought I would die. In emergency room 3X times thinking I was choking to death, felt like I coulnt breathe, the whole top of my chest was spasming, all the muscles, twiching everywhere and extreme burning of the hands and legs along with the twitching. I cant move my shoulders, and my neck muscles are all stiff as well. I felt psychotic too. I was on Mepron initially, 2 tsp full 2X a day, Sulphur, Ketek and Plaquenil (sometimes) They then decided to pulse that for 4 days and off 3, still herxing like crazy even by the 3 rd day off. Decided to switch me to just Biaxin XL 2 tabs once a day, Mepron 1 tsp, and Plaquenol also. (I have had Mepron 6 years ago with Sulphur for 3 or 4 months ot so for Babs with Larium I believe)
For the past 5 years I have been on Doxy, 4 of them self medicating by m,yself so I wouldnt get worse for fear doctors would take me off meds. Wasnt 100%, but was functional after 8 yrs of Lyme treatments.
Now the other doctor wants me back on Doxy 200Mgs twice daily. I started it yesterday after giving myself a days break from Mepron and Biaxin, and Plaquenil. Thenew doctor is an an ILADS guy. I am not really herxing now, just have the same sypmtoms just with less severity. I am terrified that the doxy will not be working as I relapsed anyway ( I was not taking enough for a long time- I was supposed to take 100 mgs a day, 3 X day and sometimes would forget to take 1. Now my Lyme is wose than it has ever been. I really didnt notice it creeping up on me or the doxy just put it sleep for a long time and got opportunistic when the levels wasnt high enough.
I am so scared i will get worse. I am supposed to go back and see him on Monday for accupaunture-( he also incorporates homeopathic in his treatment-) and blood work, but have not decided which LLMD to stay with.
I am at my wits end with this whole things an told my husband I want to stop antibiotics altogether and let this just kill me. I even went to church yesterday to see my priest because I am confident that I wlll die from this. If I am herxing this bad with the above meds nonstop from day 1, I must have some load of chetes in me, and I dont think I can make it another day living like this anymore. Not sure what my purpose is here anymore. My poor husband is terrified of leaving me alone during the day for fear I may take my life. I lost a baby in my 6th month of pregnancy 8 years ago, and the 4th of July would have been his birthdate. Theyhave given me Lexapro and Klonopin for anxiety and to try to sleep and Xanax by the other doctor. I finally took the Xanax since I had not slept for an entire month while herxing. Now the other LLMD wants me to take Klonipon instead. I never in my life took any kind of mood altering drugs, or sleep aides etc. ,so having a hard time with taking it.
Have not tried the Lexapro yet. I just want my old life back, and it seems that based on what I hear from this site that it may take me years of antibiotics to get my brain back. Thats no way to live.
Donna
Posts: 38 | From New York | Registered: Jul 2005
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GEDEN13
Frequent Contributor (1K+ posts)
Member # 4151
posted
i cannot help you with your med's.sorry.
but i can ask you ,not to hurt yourself.it is a rough road.hard to know where it lead's.
see/call your doc.tell him/her what you are going through.
sorry i couldn't be of much more help.but i do know what you are going through,with all this lyme stuff...gary
ps. sorry for the loss of your child....prayer's for you.
posted
I'm sorry you are going through this. I am too but I don't know how right it is to take xanax but I do. I was afraid of anti-depressants, anti-anxiety stuff, but I didn't have a choice when I feel this way every day of my life. I trust my psychiatrist and am scared that my llmd doesn't know what to do with me. I just started seeing a priest in my parish because of the faith I lost in myself, God, everything. When generally you are a strong person and something like this breaks you down, YOU'RE DOWN. I have a son and husband and life that I adore that I feel no connection to. Stress brings everything magnified by a million, which I know I am under like everyone else with the questions with this disease and focus is hard for everything. I remember what I used to be like, and its nothing like this. Take whatever you have to to focus on this minute - (I try,but it hardly works) take xanax or klonapin to calm down nerves. I feel like I live on it every 4 hours, but I don't know what else to do in this state at this time. I have ocd also (obsessive thinking 24/7). I am off antibiotics till beginning of AUgust - did 6 mos rocephin and brought this with stress to where I am now (some IV zithromax). I am the shell of a person I used to be, but what choice do we have. Been in the hospital 2x in one week, surgery for one - but if you really feel worse, besides herxing, have your sodium checked. Was in the hospital 2x this year with low sodium that made me delirious. It can effect you that way. We can't give up - we know life the way its supposed to be and its not that now. Hopefully soon we'll see it again And this will be a time we want to forget. It's hard when you're taking so many meds for the disease to see what's you, the disease, herxing...That's why I'm off till August. This could be wrong also, but I don't know what's what and what meds are doing good, bad... I have heart symptoms, mind stuff big time I was in the hospital and didn't care who was there and why I was there. It's a scary feeling, but what choice is there. Hang in.
Take it easy,
Cigi
[This message has been edited by cigi (edited 22 July 2005).]
Posts: 320 | From Upstate, NY USA | Registered: Dec 2004
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posted
Did you come back and read the responses to your previous post? If not, scroll back and read them. People care.
It will not take years to get your brain back, at least it didn't with me, and my case went undiagnosed for 2+ years (4 years for the babesia). So, keep your chin up and don't think the worst will happen.
In addition to the depression caused by your situation and the trouble getting treated, and the uncertainty, Lyme actually causes depression, by disease processes. So, the double whammy. Try to remember this, because when the lyme is knocked down again, that part will be lifted.
Any chance you could attend a support group meeting? Maybe some in-person support would help. I realize you feel lousy and may not be up to it and I don't know if there is one in striking distance. Just a thought.
Posts: 8430 | From Not available | Registered: Oct 2000
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