Involuntary muscle twitches are part of my neuroborreliosis. (Neuro Lyme Disease) They happen frequently through the day and always when I lie down. They happen frequently while sitting at my computer as well.
Twitching occurs not only in my legs and feet but also in my hands, arms, and even my shoulders from time to time.
Tuesday, August 24, 2010
Well, was I feeling stupid today! Found out that the 3 weeks on / off of Flagyl was supposed to be INSTEAD of my Doryx and Ceftin, NOT in ADDITION to! oops! LOL!
So I have been really dosing myself the abx! He said that's ok but he prefers to give me a break from the Doryx and Ceftin while switching to the Flagyl and kind of take the spirochetes by surprise!
This week is supposed to start my Flagyl 3 week break but now he's changed my Flagyl to Tinidazole because I have neuroborreliosis. In addition to changing Flagyl to Tinidazole, he also added Rifampin to my protocol. He suspects that I also have Bartonella ... which I was expecting him to conclude as well, based on my symptoms!
I had quite a few "bad" labs so I am also to add DHEA, CoEnzyme B complex, Vitamin D-3, and something called MaxGXL that alone will be $80.00 per month! *sigh* He also did say that we would wait and see how I do over the next 6 weeks and could possibly look into a PICC in the future if my symptoms don't improve. So that's pretty much it for this visit.
EDIT TO ADD: Oh, he also confirmed that my Igenex Lyme test was VERY positive. He said that the Bb specific bands are 18, 31, 34, & 66 and I have them all.
Posted by Whimpurr at 4:31 PM
Sunday, August 22, 2010
As soon as I got out of bed this morning, I knew I wasn't feeling well. All day I have had weakness all over but particularly in my legs and hips which is what tends to make it hard for me to walk. Thankfully I was still able to walk but slower and more cautiously than normal. I also had some tingling again in my face which really concerns me!
My husband and I did manage to go into town and buy groceries but walking through Wal-Mart was very tiring for me and by the time we left, I had a bad headache. I took some Ibuprofen after we got back home and even now at 7:30 p.m., my head still is hurting quite significantly.
My Rx for Doryx ran out a day or two ago, so I am wondering if just that simple change in meds is causing this effect on me. I won't be able to get it re-filled for a few more days but thankfully I see my Lyme specialist on Tuesday!
Posted by Whimpurr at 7:27 PM
Saturday, August 21, 2010
The pain in my upper arm is BACK with a vengeance! It is the strangest thing ... it seems like whenever it is hurting me, I can feel a bump .. tonight the bump is larger than yesterday! If it isn't hurting me, then the bump is hard to find or completely gone! I am wondering if this is a cyst of a spirochete itself or if it is something like a knotted-up muscle ... but if so, why is it perfectly round and hard like a cyst?
This disease is so complex and SOOOO frustrating!
Posted by Whimpurr at 10:10 PM
Friday, August 20, 2010
The strange sharp pain in my right upper arm happened in the exact same place while driving for the first time this week ... today ... only in my left arm this time. Same spot, and I could even feel a tiny bump again!
Now, as I am typing this, it is happening again back on the right side and my right shin is hurting as well. My right hip and upper leg feel achy as well. For some reason, driving starts pain for me. I had a 30 minute one-way trip to meet my friend for lunch and about halfway there, the arm pain started.
On top of the frustration of more pain, I am very upset and embarrassed. When the waiter brought our checks for lunch, I discovered that somehow my debit card has "magically" disappeared from my wallet, purse and apparently the face of the earth! My friend had to cover my tab and I was so embarrassed since I asked her to lunch! :( I've looked everywhere for my card and can't find it anywhere. It's pretty upsetting that the one day this week that I finally venture out on my own, I screw up like this! :(
Posted by Whimpurr at 3:03 PM
Thursday, August 19, 2010
Just when I thought I couldn't find anything new happening ... here come two more new symptoms. A couple of nights ago, I awoke to a sharp pain in my right upper arm. Upon feeling the area with my hand, I found a very tender spot and a small "bump" down under the skin. Not sure what to think of it but never have noticed it before now. It is still there today ... about 3 days later.
In addition, this next one sounds a bit far-fetched but upon further study, it is apparently another common "ailment". Night before last, I could not get to sleep (after being awoken) by an insane itching of my head and neck! I had no reason to think that my scalp was dirty ... heck, this was the first truly "coolish" day we have had in months! I was beginning to think that I had bed bugs but just on my pillow. Ugh! Anyway, as I stated above, this is another common symptom of parasites. UUGH, I hate that word!!! Where is House when you need him?
Posted by Whimpurr at 9:10 AM
Thursday, August 12, 2010
Yep, two posts for today. BAD pain day today. Sleepless nights can't be helping. Upper body aches really bad ... arms, shoulder, elbows ache just trying to hold phone up or even my food to eat. Depressed too which makes matters worse. Praying for relief tomorrow!
Thought my "bump" was gone but it is not. I just didn't feel in the right spot. *rolls eyes* Hoping for a more positive outlook tomorrow as well.
Posted by Whimpurr at 8:03 PM
Last night makes the 3rd night that I've had minimal sleep. It takes me hours to fall asleep and then I woke up several times and this morning just went ahead and got up at 5:00 a.m. Lots of aches and pains and just could not get comfortable. I even got up sometime after midnight and took a hot Epsom Salt bath. That is what finally made me go to sleep for an hour or two before waking back up.
The worst part about this, is the fact that I have been taking my OTC sleep-aid every night and I get sleepy but still can't sleep. NOT a good feeling! The bump in my groin area is still there and the area surrounding it is still very tender. I'm going to give it a couple of days to see if it goes down on its own. Of course if my fever goes up or there is any sign of infection, I will certainly do something right away. Guessing it's just another "lyme thing" and will settle back down in a day or two.
Feeling discouraged today as I had enjoyed spending time out with my daughter yesterday and paid for it last night. It seems like I can't spend too much time "on my feet" without later being very achy and painful. Each day that things are still bad and not better just get me down. Praying for strength in this journey, dear Lord!!!
Posted by Whimpurr at 11:26 AM
Wednesday, August 11, 2010
The past two nights in bed, I have had a throbbing pain in my forehead over my left eye. Still don't seem to have any sinus "issues" so who knows what this is? I've also noticed that my head / neck area seem to crack and pop more often and more easily. Funny that this is even one of the noted symptoms. Isn't that weird? uugh!
I am still having continued muscle twitching and sometimes it is more frequent and more pronounced than at other times. My hands are getting more stiff and painful it seems nearly every day and I'm sure that continuing to use my computer isn't helping matters but I will NOT give up my computer time. Heck, what else do I have for entertainment right now? Honestly, NOTHING! :(
Hubby and Bear and I took our "nightly" walk last night and then I came home to read that walking isn't "good" for me right now per the infamous Dr. Burrascano! *sigh* I guess I will just try to do some stretching exercises and maybe only walk once or twice a week and go more slowly? Who knows?
My knees were more painful last night and I had that sharp pain in my second to big toe but this time on my right foot. The worst thing though is that this morning, I woke up with major soreness in my right groin area! Upon investigation, I found another "bump". This isn't quite as "personal" as the last ... it is closer to the groin area where my leg meets my body. All through that area is extremely tender and sore and this REALLY concerns me as that is the location where I had my heart catheterization and that StarClose clip is "installed" permanently in me! :(
Just what I need ... more worries!
Posted by Whimpurr at 1:16 PM
Tuesday, August 10, 2010
Well, I finally got my results back from Igenex. They are the preferred lab for Lyme testing. They give results by their more detailed standards as well as by what the CDC considers to be sufficient standards. Many people get Igenex "positives" but still do not meet the CDC "positive" criteria but I met both on the IGM test which is what shows current infection with Borrelia Burgdorferi (Bb) which is the organism that most commonly causes Lyme Disease.
The IGG (current or previous infection) was "negative" for me by CDC standards but was "positive" by Igenex standards. I'm still not sure why both IGM and IGG say "current" infection but from what I've determined so far .... the IGG shows up later on ... the longer you are sick. So, my IGG may very well meet the CDC criteria if I remain symptomatic for a while longer. (Which I'd prefer NOT to do!)
The positive bands are indicated by (+) the negative by (-) and the IND means a very weak positive result.
Posted by Whimpurr at 1:20 PM
Saturday, August 7, 2010
Well, I did have a pretty bad herx last night. I was very achy again and painful and finally broke down and had a good long cry. My sweet husband just knelt over my bed and consoled me. Thank GOD I have him to comfort me!
This morning I mostly just felt weak. We did go into town and had lunch and did a little bit of shopping. Towards the end, my legs were weak and I felt a bit unsteady and very ready to get home. I was tired and yawning the whole drive home.
This evening I made myself take my 2nd dose of Flagyl. I had only one dose the past 2 days so decided to suck it up and take both today. So far, so good! I really want to get as much action from all these antibiotics as I can ... without totally making myself miserable! My theory is no pain, no gain! I pray that is the right one!
We also took our dog, Bear, on a 15 minute walk tonight. Not feeling too terrible from that which yesterday, the same walk is what seemed to set-off the herxing! Maybe the worst of this one is over?
Posted by Whimpurr at 8:45 PM
Friday, August 6, 2010
Ok, so this is the 4th full day of Flagyl. and just like clockwork, I'm having a herx. I thought I might be starting one last night as I had some random pains and more muscle twitches but now I have the lovely all-over body aches.
There are two ways to look at this. One is to feel (can't even think of a word to describe how it "should" feel) .... maybe somewhat "assured" that the meds are killing off whatever organisms I have in me. The other option would be to feel depressed, disappointed, bummed that this just confirms my diagnosis of Lyme that much more. I suppose that I am stuck somewhere between the two feelings. Do I have a choice at this point? Not really thinking that I do.
For now, I choose to continue my treatment as prescribed and have faith in God that it will work in His time!
Symptoms: Body Aches, weakness, back, shoulders, legs, lightheaded feeling, heading up to a bath and bed. :( 8:02 p.m.
Posted by Whimpurr at 5:54 PM
Thursday, August 5, 2010
The past two nights before bedtime, I've had a bit of indigestion and today after lunch my tummy was a bit upset. A bit of cramping and a good "emptying" but nothing too serious so far.
Day before yesterday, my 2nd toe (beside big toe) on my left foot was shooting sharp pains on the backside and this continued through the night. It was quite uncomfortable but sort of came and went. Yesterday it was gone as quickly as it came.
Yesterday late in the day, I began having a sharp sort of throbbing or pulsating pain in my right thigh which also continued through the night. It is still causing pain off and on today as well. I have also had noticeable muscle twitches a bit more in my feet and legs while sitting at my desk.
Perhaps the most worrysome symptom is one I had last night and a while ago today as well. I have had some heart palpitations which leave me feeling a bit breathless for a few minutes afterwards. I asked some of my Lyme friends online and they said it could be part of a herx as well from beginning the Flagyl but Magnesium deficiency can also cause them. So, tonight I will take a hot Epsom Salt bath to try and help with that!
I'm considering not taking my suppertime dose of Flagyl tonight but again, I am trying so hard to be "brave" with my treatment. *sigh*
Posted by Whimpurr at 3:46 PM
Tuesday, August 3, 2010
I've been dreading adding the antibiotic Flagyl to my treatment but I did my research and decided to just go at it as prescribed. I've read good and bad things about this drug ... some people experience stomach upset which is really what I'm most concerned with. Others say that it causes severe herxes ... which is an increase in symptoms and pain as the cyst form of the spirochetes are being killed and releasing toxin into the blood stream. Sounds lovely, doesn't it?
So, yesterday I began with just one pill and did fine with it. This morning I took my first dose of the day and still no issues. I just ate dinner and had my 2nd dose for today ... feeling fine. Don't want to jinx myself here so I am just extremely thankful to GOD that this is going so well this far!
The only thing that could possibly be signs of a herx reaction that I am having right now is a sharp pain in the middle toe of my left foot. Of course my fingers are hurting as they usually do pretty much all the time now anyway.
I will update tomorrow.
Posted by Whimpurr at 5:02 PM