Feel like ****... don't know what to expect

[anonymous680]

So, lately I've been feeling bad just all the time. I'm not having specific pain, but the neuro-psycho (or whatever it is) stuff is taking a toll on me. I've tried one week on doxycycline. When I started it I was actually feeling well and didn't feel any different for a few days. Suddenly, for no apparent reason, I felt my heart skipping beats and fluttering, I was knocked to the ground, and I had a severe panic attack. I had a really severe panic attack to the point I couldn't communicate and had shocking sensations and ringing in my ears. However, I do remember everything very clearly. I was having trouble communicating with the E.R. doc at first, so he thought I was on drugs and he ordered a drug screen (all negative).

I saw a neurologist wants to do a video EEG to make sure it's not some type of seizure, etc. Just a few days ago (and even a little now) my consciousness was altered to the point where I couldn't think at all, and external stimuli (sound, lights, visual surroundings) were confusing, and felt like torture. Although I am feeling better than before I am still not feeling well. She also wants to do a brain MRI and another echo-cardiogram of the heart because of my heart symptoms (I had one 8 months ago or so). I was going to have the EEG Monday, but I changed the appointment because I am not ready to be trapped for 3 days with electrodes on my head. I am doing it the following week instead. Has anyone here had a video EEG? I am hoping to get everything else done this week. I haven't felt any numbness, twitching, or nerve symptoms for a couple months, so I am skipping the nerve conduction test.

I also saw a psychiatrist, because at this point, I just want my symptoms under control. The psychiatrist was very nice, but she didn't want to give me anything besides some more tranquilizers (benzodiazepines) until everything is done at the neuro.

So, right now I am not feeling very mentally or physically strong. The pills for anxiety haven't been making me feel too much better lately. I have low grade fevers (99.5) that comes and goes, I have some strange rash on my back, and each day I feel different. I'm trying to be positive, but there is so many curve balls. Each day when I wake up, I don't know what to expect. I want to be able to move out of my parents house and get on with life, but I am having trouble even starting treatment. I am IFA and Western Blot CDC positive, and have all the antibiotics to get started. I just need to feel comfortable enough to get to that step again.

Sorry for the long rant and cluttering the board, but I am feeling more relaxed now, and I think I can get to sleep.

[anonymous680]

Sore muscles gone. My head feels clear. I think I herxed with the ceftin very quickly and it was nothing like the last herx I had with the doxycycline (thank god). I'm still on a low dose, but with the sore muscles/ribs/feet and altered state, I think it was really working.

Knock on wood, my chest feels better. I feel like I can get a good breath. My heart is not skipping fluttering and no palpitations. I was even able to watch a football game (high school) outside in the cold tonight. Made me feel a ill for a while, but my body adjusted. I have a lot of trouble with heat and cold, and I was so surprised I was able to make it through all 4 quarters without needing to leave.

I know this will be an up and downhill battle, but it feels good to make progress and have good days. Best day in a long time.

[JackieCalifornia]

Good luck!  Hang in there.  

[anonymous680]

I am taking magnesium along with CO-Q10 Fish Oil, and a good quality multi-vitamin. When I feel worse, I seem to avoid taking supplements (not logical, know), so I am trying to get in a habit of taking them all the time. I am also supposed to be getting B12 shots soon.

Well, the herx is coming on and I woke up feeling aches and soreness in my legs and ribs along with that altered conciousness and anxiety. I had to double up on the anxiety meds today, and while it's helping with the anxious feeling, the brainfog and altered state is something else. This is no typical flare by any means, but I am going to make it through it this time.

Wish me luck.

[JackieCalifornia]

I think the paramedics may be required to roll on any call.  To avoid liability later.

Lyme uses up magnesium in your body, and magnesium is what keeps your muscles (including your heart) operating smoothly.  I get twitches in various muscles and also leg cramps when my magnesium is down.  

It's hard to test for, because most Mg sits inside your cells and not in your bloodstream, and blood tests only measure ... what's in your blood.  When the cells are getting depleted of Mg, then the blood levels eventually drop, which mine do and so it shows up on blood tests -- but at that point, I'm pretty low.  My first symptoms of Lyme were fatigue and heart irregularities.

You might ask your dr if it's okay to try some magnesium supplements.

[anonymous680]

Well, tonight was interesting.

I felt a heart arrhythmia. It got me worried a bit, but I brushed it off as anxiety. Had another one and while having it called 911. While on the phone, it passed, and I told them they no longer needed to come, and everything was fine. Well, they came anyway. A little embarrassing as I have never called for emergency help. Heart rate fine, EKG fine, blood pressure fine, everything fine. It wasn't panic that time. I'm living with my parents right now, and after they left, I got a big lecture from my parents that I don't need to call 911. You aren't going to die. You need to convince yourself your not going to die. Grow up. Bla bla bla bla.

I wish that the ambulance didn't come when I told them not to. I'm feeling stressed out now too since everyone got mad at me. I am 23 years old and back with my parents. I wish I felt well enough to be independent again. I don't think anyone understands.

[JackieCalifornia]

Glad you're feeling better.  Be sure to have a list of all the meds you are on at any one time and show it to every dr you see, so that all your MDs know what you are taking -- unknown drug interactions on top of illness are surely something you could do without.

Take care.

[anonymous680]

So, I am starting antibiotics again (Ceftin). After 4 days of the doxycycline, I didn't only feel horrible, I was in a strange, scary, continuous altered mental state for at least a few days. I was in constant indescribable fear. No matter how much hypnotic drugs I was on, the feeling of impending doom was always present. I had one unproductive E.R. visit, but for several days straight, I felt like I needed to be hospitalized. Thank god I have family. I literally couldn't talk to anybody as any sound or visual stimuli was paunful for a while. Watching T.V., going on the computer, using a phone, etc gave me a strange sense of anxiety and a nauseous feeling. This is gone most of the time now, and my brain is feels more normal every day.

At one point I was saying to myself I am never going back on antibiotics, but I don't have those feelings anymore. It's like having a hangover and saying you are never going to drink again. My brain is letting go of the negative experiences so I can give it another shot! We'll see how the Ceftin goes, and if all is well, go on the doxy too.

My doctor thinks I may have bartonella, so he gave me a prescription for that that I need to fill. I haven't been extensively tested for it and I think he may have tested for it through LabCorp, but he said there are new types of bartonella that aren't known/tested for. It sounds like a little bit of a shot in the dark to me, but after nearly a year of this nonsense, what do I have to lose? I really don't care anymore. I just want to feel better.

My family has noticed that I got my personality back. My dad thought I was suddenly becoming schizophrenic (he never directly told me, but I caught him researching it on his iPhone browser). I replied, "The person you saw wasn't me. I was in a really strange altered state that I had no control over."

Everyone seems to understand now. My dad doesn't say too much, but I think he was just scared too.

[jkv44]

Morning,
I read your post and have been there myself. Starting treatment for me was the toughest part. Then like you said dealing with the ever changing symptoms of the lyme. It's very scary and know exactly how you feel.

just know with time and patience things do get better. I promise. Even now I've been diagnosed for almost three months. New symptoms pop up and others go away. My doctor said if you know that it's the lyme and usually it is, try and right it down. I don't get to freaked right now because I know what it is. If I feel something is really unusual, then I call my doctor and my primary and ask for an appt.

good luck and vent as much as you like. I do all the time and everyone here is so understanding. It really feels so much better after ranting here. :)

[anonymous680]

Yes, you have to have a sense of humor when it comes to this disease. I laugh about myself sometimes. It's horrible, but how the symptoms change can make one look crazy. I mean, if I were a doctor, I probably would think someone is crazy if there symptoms just keep evolving on a week to week basis. I am finally feeling a little bit more normalcy day to day. I am still on benzodiazepine tranquilizers for random horrible panic attacks that I get, and I will remain on them when I continue the antibiotics again. I have had panic with this illness, but my doctor thinks it was a herxheimer that caused or contributed to this one.

The attack I got while on the antibiotics was the worse torture I could imagine (and I thought my previous were bad). I just laid face first on the tile floor sure I was about to die. I wasn't freaking out, I was laying on the ground like I was paralyzed doing my best to not fight it.

All other thoughts put aside, I am feeling really good and optimistic that everything is going to go the right direction. I've been letting negative thoughts intrude (conciously or not) the last couple weeks, and I am trying my best to put them all aside and just focus on the moment. I have to stay mentally strong. I am doing my best to get all the help I need.

Thanks for all your support! Everything helps. Stay strong.

[margypops]

I know how you feel, today and yesterday I woke with tinging toes and middle 3 fingers , maybe I am typing too much, I got static shocks from the metal shelves in the new WallMart since then I have had tingling LOL  or maybe its Lyme ..who knows as you say always something new, my eyes are so dry..I got new anti histimine drop today for them, now my hands are aching ....LOL wow I still have my sense of Humor

[JackieCalifornia]

Sorry to hear you're not feeling well.  It sounds like you are trying hard to get a handle on things.  Ask your doctor whether your episode was a 'Herxheimer reaction' to the doxcycycline -- it happens sometimes when the medicine is killing the bacteria at a high rate and it makes you feel temporarily worse, sometimes much worse than you would expect.  Your doctor might change your medications or lower the dose so you don't get such a reaction, if that's what it is.

Also be sure all your MDs know what your other MDs are prescribing for you -- that way they can watch for interactions.

Good wishes to you --