Saturday, October 30, 2010

Update - Day 7 of Tinidazole Pulse

I have been back on Tinidazole along with my Rifampin for a week now. So far the main symptoms have been more sleep issues and horrible Restless Legs Syndrome (RLS). My legs feel so awful that I have to get up and rub them down with muscle rub cream and I still am having trouble sleeping.

The only thing beside sleep and RLS symptoms is that I have noticed a return of some mile muscle twitching again but so far nothing too bad. Hoping and praying that means that the beasts that are causing the twitches are nearly all dead or dying!

Oh ... I almost forgot ... I have had some nights of waking up with a soaked head and upper body but it might be hormonal since I am "of that age" as well. Just what I need ... another health "issue" right now! :D

Tuesday, October 26, 2010

Day 23 Rifampin - Doing well!

Finally, the herx from this course of Rifampin has subsided! I had some sleep issues, anxiety and nausea this time ... which I think was because I wasn't eating enough with my other meds (took very small doses of Xanax which took care of these symptoms) ... but for the past 3 days have been doing well! I even was able to do 40minutes on the treadmill on Saturday the 23rd and another 35 minutes on Monday the 25th! YAY!!!

Thursday, October 21, 2010

Rifampin - Day 19 and COUNTING .....

Well, my LLMD returned my e-mail about pulsing with Rifampin. He said that although it is "certainly safe to pulse with Rifampin" that the other doctors at the recent ILADS conference felt it is better to take it continually for a minimum of 3 months. So, I "get" to stay on this wonderful drug indefinitely now. I was really looking for to being almost over this pulse for 3 weeks. *sigh*

So now I will only get to take a break from Doryx and Ceftin for 3 weeks and begin taking Tinidazole with the Rifampin for 3 weeks, beginning on the 24th of this month. The encouraging part of this, is that while I still have weakness and vague aches and pains, I am feeling much better the past 3 days now. I am praying that the worst of the herxing with Rifampin has now passed and maybe since I don't have to stop and re-start it, that maybe that means I won't have to herx so significantly again with it!

Didn't sleep well at all the past two nights though ... body is tired but mind isn't! I tried to take advantage of being up at 6 am this morning and made myself walk on my treadmill for the first time in months. I was pleased that I managed 10 full minutes! (YAY ME!) I have to say that it actually felt good for my legs during it and now they feel stronger already this morning than the past several weeks! MUST KEEP UP THE EXERCISE!!!

Wednesday, October 20, 2010

Day 18 - Rifampin Pulse - Herx seems to be easing finally!

Yesterday and today, I have been much less painful. Still slightly achy but more energetic. The main thing is that I just feel so weak. My legs are so weak that I just feel like I've lost all muscle mass in them. I guess each herx that I hurt for days on end, just causes muscle deterioration. :(

Well, I am thankful that I am at least feeling a lift in the horror of this herx anyway. Only 4 more days of this Rifampin pulse ... unless my LLMD says I need to take it longer as opposed to pulsing. Still have not heard back on what he found out about the safety of pulsing with Rifampin.

Saturday, October 16, 2010

14th Day of Rifampin .... So much PAIN still!

Man, will this Rifampin herx EVER end? I hurt so bad non-stop now ... I really need a break! Bottom of foot is hurting right now ... my legs, hips have been really hurting and my lower back and getting sharp pains like internally on my left side and stabbing pains in my left thigh. Head and neck pains .. basically my whole body hurts and aches. I am really getting tired of this and desperate for some relief!

Thursday, October 14, 2010

Herx Update - Day 12 of Rifampin

Had trouble falling asleep again last night. Wasn't quite as painful except in my arms and shoulders. It was somewhere around 12:30 AM before I fell asleep and I woke up with a bad pressure-type headache at 5:00 AM. I went ahead and got up because it hurt and I couldn't get back to sleep.

Overall today, I have been more achy again. Pretty much all over my body is aching and hurting. My legs are weaker again and I've had some mild hip pains and balance problems again but not the severe type as when I first became ill. My tummy still seems a bit reluctant to eat ... so I really didn't eat but a couple of bites of oatmeal for my breakfast. After both lunch and supper, I felt a tad bit queasy and had to have a BM pretty quickly afterwards. Thankfully nothing too bad ... just mildly uncomfortable.

I contacted my LLMD today and asked about the safety of pulsing with Rifampin and also requested a prescription for Xanax and possibly something for pain. He said that he was going to be attending an ILADS conference this afternoon and would find out more about the safety / issues with pulsing Rifampin! Doctors who have taken on the challenge of treating Lyme Disease are constantly learning and experimenting with this illness and its co-infections as well and I am greatly appreciative that my LLMD is open and willing to admit when he is unsure of a certain protocol!

He also said he would call me in an RX for Xanax and also Cymbalta for pain. If the Cymbalta doesn't help with pain he would prefer me see a pain specialist. I'm hoping that the Cymbalta will help. I am also thinking that the Xanax might also help but it is not something I would want to take on a regular basis just for pain!

Wednesday, October 13, 2010

Not feeling well.

Last night, in addition to the usual aches and pains, I also felt a bit nauseated and panicky. I don't know if it was one of the panic attacks that I get from time to time or another symptom. All I know is I felt awful. I was also feeling the newest symptom of chills (without fever) and the "need to chill" without actually being *able* to chill. That sounds so strange but I don't how else to describe it.

Anyway, I went up and got a hot bath (which helped with the chills) but then had to get a cold wet washcloth for my face / neck and sit in front of my desk fan to help with the nausea. I finally broke down and took 1/2 of my very last Xanax. This was from a prescription dated 10/14/08 of which I only had 10 pills. That is how very rarely I break down and take one! I have panic attacks from time to time and try to work through them without the medication. Once I get to the point where I can't handle it (usually when nausea is involved) I finally have to "give in" and take a Xanax. Even still, my RX is 0.5 mg and I only take 1/2 of a tab. I do NOT want a dependency issue with any drug ... especially something like Xanax!!!

So far this morning, I thought I was fine upon getting up but now my chest is hurting and my heart is pounding. I can feel it and hear it in my head. I have checked my BP twice in the past hour ... the first time it was 135/80 pulse rate 73 and the second time it was 127/84 pulse 75. I did just take my BP meds so I am giving it time to start helping. I really am feeling sickly again as well.

I need to go and help my Dad with his computer today but I sure feel horrible right now. Praying that this will soon pass!!!

Tuesday, October 12, 2010

Symptom Update

Another bad night. Lathered myself from head to toe with muscle rub ointment and then froze all night from it. After finally getting to sleep somewhere after 11 PM, I was awake again at 3:00 AM and stayed up until 4:00 AM. Finally got some sleep and got out of bed at about 10:00 AM.

Took Ibuprofen to try and alleviate some pain but it did nothing for it. I am having lots of bad dreams again too which doesn't make for a peaceful sleep either. Today I have just been feeling plain lazy and kind of glad it is a gloomy day .... that way it "fits" my mood and I don't feel like a beautiful day is going to waste on this illness!

Hoping and praying that tonight is better or at least no worse and that better pain-free days are coming again soon.

Monday, October 11, 2010

Day 9 - Rifampin - Second Pulse

Had a bad sleep night last night ... lots of aches and migrating sharp pains .... feeling the same today and progressively worse. Tonight I feel weak and had a difficult time walking outside and back to feed my dogs. This herx has had the usual all-over body aches and pronounced sharp pains in the sole of my left foot, pains in the sides of my neck and base of my head, a strange feeling in my head, aching hands, fingers, toes, wrists, elbows, shoulders, etc.... etc..... *sigh*

It's only 5:30 PM and I am about to head upstairs to the tub and bed for the night. Hoping this is the peak of this one!

Sunday, October 10, 2010

Symptom Update - Day 7 of 2nd Rifampin pulse...

Yesterday I had significant musle aches and pains in my hands, fingers, wrists, ankles, knees, feets, toes, soles of my feet and back. I also had some muscle twitching in my left upper arm. I had a headache and sort of "swimmy" feeling in my head as well.

I took a bath early in the evening and got in bed. I am more fatigued as well. Used lots of minty muscle rub for the first time last night and that seemed to help some. Helps to open the sinuses too ... lol!

So far today, I am achy and feel a general fatigue and weak feeling all over. I feel more unstable on my feet as well. I suppose it is "good" to know that the Rifampin is "working" to kill off germs but it is also disappointing to know that I'm still not well.

Friday, October 8, 2010

Back on Rifampin and back to herxing....

The more I thought about stopping the Rifampin just because of depression, the more worried I became. So, I decided to deal with the depression and get back on it. The result? I am still very depressed and have started having aches again and low energy as well. I've also been having lots of annoying dreams again.

I am back to crying several times per day and today I have had leg, ankle, calve, back of thigh, and hips / buttock aches as well as a bad headache. I had forgotten what this felt like and I was so very hopeful that I was "cured". The reality of this illness is adding to my depression.

Just as a note, in addition to 600 mg. daily of Rifampin, I am also back on 1000mg. daily of Ceftin and 100 mg. daily of Doryx. I also bought a Magnesium supplement today to start taking as well. Magesium is supposed to help with muscle and nerves ... so hoping that if I am deficient, then the supplementation will help with my muscle twitching.

The bottle of magnesium also states that it can help turn blood sugar into energy which is exactly what my body needs as a Type 2 diabetic. Sure would be great if I could improve my diabetes as well.

Tuesday, October 5, 2010

LLMD Visit - Stopping Rifampin for now

Well, I saw my LLMD today. I told him how much better I have felt since my first pulse (3 weeks) of Rifampin. I just realized that I didn't even tell him anything about what the Tindimax had done ... which really was just a headache the first day or two ... because I have felt so much better since the Rifampin.

The only thing I have noticed with Rifampin is that it causes depression. I just started my 2nd pulse of Rifampin on Sunday and both yesterday (Monday) and today (Tuesday) I have felt very depressed. :( I told Dr. K. about this at our visit today and he said to stop the Rifampin. So now I am back to just pulsing with Doryx and Ceftin for 3 weeks. Then I will pulse the Tindimax for 3 weeks and repeat until my next appointment with Dr. K. in about 8 weeks.

Dr. K. said that if I still feel good the next 8 weeks with no increase or return of symptoms then I might be well enough for him to "release" me!!! Wouldn't that be awesome!!! I am still having some muscle twitching though and he said that it could just be Magnesium deficiency, so he told me to supplement with Magnesium. I sure hope that is all it is because just tonight, I've noticed more leg twitching while sitting here at my desk. *sigh*

The thing that I am worried about now, is that if my symptoms return or worsen and I have stopped Rifampin ... then what can I take? Rifampin if the first drug that has really gotten me back to feeling "normal" again!!! I've had energy and no aches or pains to speak of ... and really very few muscle twitches mostly at night in bed. I really don't want to backslide any! Oh well, time will tell!