Tuesday, November 30, 2010
It's been hard to know for sure because the weather has been so weird as well .... rainy then cold then pretty again, so was just hoping it was an arthritic thing. However, it is the leg weakness and return of some muscle twitching that have me concerned again.
Last evening I began having a constant muscle twitch / spasm on my inner thigh muscle ... just to the right and above my left knee. It was so strong and continuous that my husband and I could both just lie there and watch it. It remained that way sporadically up until bedtime. My legs were quite achy as well. Today, my legs have felt weak and achy all day and it nearly killed me to bend over the tub and bathe my small dog this evening. I know that I am obviously in poor physical condition but this was ridiculous! Now, since bathing my dog, my legs feel so much weaker and I can just tell that tonight in bed will probably be bad.
Tomorrow was to be my next LLMD appointment ... the first since stopping my antibiotics but I cancelled my appointment! I just cannot deal with this right now ... right before Christmas! I knew he would most likely put me back on meds and because I have volunteered to host my hubby's family Christmas at our house this year, I cannot risk being sick and herxing during this time! It's not like a few more weeks off the meds will make a huge difference anyway.
As I am sitting here, my calf muscles in my left leg are twitching. *sigh* I was SO hoping I was done with all of this! :'(
Tuesday, November 16, 2010
I guess time will tell.
Tuesday, November 9, 2010
I will continue to blog and document any symptoms that I feel may be a continuance or reoccurance of Lyme and Co.
Monday, November 8, 2010
Well, after 5 hours in the ER ... 4 sticks due to dehydration to finally get an IV of fluids and nausea medicine in me ... my labwork came back fine! Liver enzymes were fine! Came home with a script for Zofran and was told to double up on my Protonix that I take nightly for reflux. I will begin taking one in the morning in addition to the one at bedtime.
Still woke up with a panic attack one hour after falling asleep (even with the nausea meds in me) and had difficulty sleeping all night again. Today was better for most of the day though I did get several periods of waves of anxiety and nausea but now I am really leaning toward all of this being hormonal in nature!
I had an endometrial thermal ablation four years ago and haven't had a period since then. Back when I did menstruate, I had panic attacks around my cycle fluctuations. Things seemed to really calm down after my surgery since my severe cramps and excessive bleedings were gone. For years now, I don't even think about my cycle anymore as it is rarely obvious to me except for tender breasts now and then. So ... I looked up the signs / symptoms of perimenopause and there are 35 of them. YEP, and I have / am experiencing MOST of them. Night sweats, panic attacks, rapid heartbeat, moodiness, depression ... GI disturbances ,..... etc.! I'm thinking that my 46 year old female body is the cause for these latest issues!
Although I don't enjoy them, just knowing that something NORMAL is occurring for once is such a relief!
Saturday, November 6, 2010
Friday, November 5, 2010
The main thing that is REALLY bothering me, is that I have extreme anxiety! I feel nervous, anxious and SCARED all the time. It gets progressively worse throughout the day and by evening I am about to come unglued! I am trying so hard to not take my Xanax ... and so far haven't given in but it sure is an extremely uncomfortable feeling that can bring me to tears. I don't know if it is a side effect of the Rifampin but it does seem to be worse the past week or so since I've been pulsing Tinidazole.
Another very annoying thing is I have a bad, metallic taste in my mouth. It really messes up trying to enjoy eating and leaves such a nasty aftertaste. Just adds insult to injury! :(
I am so tired of this disease!!!
Tuesday, November 2, 2010
Last night after supper, I had some slight nausea and indigestion .... but also discovered my blood sugar was quite high which does cause that as well. Went to bed but awoke as always about one hour past falling asleep with a bad panic attack. I had even taken 1/2 of a Xanax before bedtime. :(
Tonight, I am feeling a bit anxious again as supper is in the oven and not too sure if I want to eat or not. I'm so sick of being sick and always having to guess whether or not to eat or not and what illness is causing what symptom! :[
Saturday, October 30, 2010
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
Thursday, October 21, 2010
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
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
Thursday, October 14, 2010
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
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
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
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
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
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
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!
Wednesday, September 29, 2010
Thursday, September 16, 2010
Just wanted to note the increase in twitching again which I am attributing to the Tindimax pulse!
Wednesday, September 15, 2010
I am really getting encouraged that the Rifampin has worked well for me and that would be right on target for what I have read from other Lyme patients' experience with this drug as well! I will go back on the Rifampin after this 3 week period with the Tindamax. I may still experience a herx from starting Tindimax but I am hoping the initial headache was "it" for this drug!
Sunday, September 12, 2010
I began my pulse of 500 mg. of Tindamax twice daily for 3 weeks. No other antibiotics with this drug for the next 3 weeks. I have had a headache which began this afternoon and is still with me tonight. Wondering if I am already beginning a herx or if this is just a "normal" headache.
A couple of days ago, I began having sharp pains and burning in my chest area which is worse when I am hungry and during and after eating as well. I am thinking that all the medications are starting to wreak havoc on my esophagus and stomach. I found my bottle of Protonix (Pantoprazole) and took the last pill. I will have to call and ask for a re-fill to help with acid reflux. I just pray that is ALL that is going on and not something worse like an ulcer of gallbladder problems.
I have felt so good the past 3 or 4 days that I am really dreading another herx! I have big plans for tomorrow and the next month as I am buying a horse and will be having training classes. I want so badly to feel good and be able to enjoy this fun time and not spend it in bed! PRAYING for good times!
Saturday, September 11, 2010
I am stopping my current 3 abx and beginning a 4th new one tomorrow. I will do this change for 3 weeks then go back to the others for 3 weeks and keep teeter-tottering back and forth like that. It also has to do with the life / breeding cycles of the critters too! It is very complicated scientifically so it's not just guesswork, it's a scientific formula! Today has been my THIRD good day in a row! I am so thankful!!! Yep, I have a little fatique and a few minor aches but NOTHING like I have been up until now! The main thing is the past 2 nights I have had a true "restless leg syndrome" feeling in my left leg. The yucky feeling that only gets better if you move it constantly. It's not really a pain or ache that you can rub but an annoying sort of "nervous leg" feeling. So strange! I almost got back up and took a 2nd bedtime bath but instead just rubbed some Vicks vaporub all over my leg and tried to go to sleep. Thankfully, I did and slept well after that!
Friday, September 10, 2010
What a difference today was! Although I woke up still a bit painful, I eventually got a burst of ENERGY! Yahoo!!! I can't believe how much better I felt. I even worked outside for quite a while ... used our electric hedge trimmers, raked up all the clippings, pulled weeds and cleaned up the patio area. Normally I wouldn't have been able to even attempt any of that! What a relief to feel fairly normal again!
Surprisingly, I didn't crash afterwards either. The rest of the evening was enjoyable as well. When I got in bed ... after a bath ... I still felt pretty good. Finally the achiness returned but not nearly as bad as the past few nights. It felt more like a true restless legs syndrome type feeling. In addition, I had pronounced stabbing and burning pains particularly in my feet and toes.
I have noticed that today and even yesterday at my "worst" that I haven't had hardly any muscle twitches! I remember having one soon after going to bed last night but the pain was my worst symptom.
I don't really remember having many twitches all day today or this evening either. I do feel like I am getting "stung" by bugs or something in many areas of my body today. Such an annoying and strange sensation! Tonight, as I stated above, I had a hard time getting my legs comfortable and it kept me from getting to sleep so I got up and took 4 more Ibuprofen tablets. Hoping to go back upstairs to bed soon.
A couple more symptoms that I need to note are the icepick stabbing type pains in my head ... more so the past 2 days during my most painful times. Also most of yesterday and a bit today, I have had a sharp pain in my right breast. This evening, I had a weird feeling deep in my throat which was scary but finally passed. So basically, the twitches have improved and the terrible aches have subsided and now mostly it is stabbing, stinging pains in various areas and particularly in the bottom of my left foot.
My feelings about these past couple of days is that the Rifampin herx sort of peaked and today started to subside ... and the good results are less twitching. I sure hope it lasts! I only have to take Rifampin for two more days then I will get to stop it for 3 weeks, as well as my other antibiotics (Doryx and Cefta) while I take only Tinidazole for 3 weeks. The Tinidazole will be another new one for me ... so chances of a "new herx" are likely. Hoping it won't be as bad as the Rifampin herx.
Wednesday, September 8, 2010
Are Depends next in my future of "treatment"? :(
Monday, September 6, 2010
I am still having regular speech issues .... saying wrong words or scrambling the letters up and it really irritates me. I can hear myself doing it but can't seem to get the words to come out right. Today I got stuck on a sentence while trying to tell my granddaughter something simple. I finally just said, "I can't even talk" and gave up. :(
Lots of body aches and extreme fatigue again. I yawn so many times per day you would think I would pass out from lack of oxygen! I've also been very highly emotional and easy to break down and cry as well. This is a bad time for me right now. I am praying this will improve and SOON!
Thursday, September 2, 2010
Right now my calves and arms and back are aching .... still lots of muscle twitches as well. Started back on Cat's Claw yesterday as well ... had run out of it but found more at our local GNC store. Still waiting for the MaxGxL to come by mail so I can begin that. Couldn't find the Coenzyme B Complex anywhere locally so have ordered it by mail as well.
Monday, August 30, 2010
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.
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!
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!
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! :(
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?
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.
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!!!
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!
Tuesday, August 10, 2010
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?
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.
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*
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.
Thursday, July 29, 2010
I sure wish I knew what decides a good or bad day for me. Today I have been weak- legged again and it has gotten progressively worse through the day. I didn't do anything out of the ordinary for a normal day at home for me. I've been up and down the stairs the average amount of times I would say but just now (7:10 pm) I could barely make it.
The only thing I have done differently today is to increase my Transfer Factor Lyme Plus from 1 to 2 pills per day as the instructions on the bottle say to do. I doubt that has made a difference in how I'm feeling at all but I do want to remember to note any changes in my treatment!
My arms are feeling weak and achy now as well and I just have that all over rundown feeling. I'm feeling a bit discouraged right now and of course my left hand is still hurting. Oh, and I've noticed more muscle twitches in my legs today as well.
Tuesday, July 27, 2010
The past two days (before today) I had a headache all day. Yesterday I attempted to get some exercise by walking on my treadmill. (Something I haven't done since becoming ill.) I was disappointed to find that after only 2.5 minutes, I was looking at the meter and feeling like I wanted to stop! I managed to make it to 5.0 minutes and I mean it was all I could muster.
I find this very discouraging as I was already terribly out-of-shape but I had managed to do at least 15 or 20 minutes before I contracted Lyme. I am so worried that I'm going to lose the little bit of muscle mass that I still have ... which isn't much!
As the afternoon and evening progressed, I became achy all over. My upper body ... arms, neck and shoulders ... bothered me as well even though they hadn't been "worked" on my treadmill. By bedtime, I was feeling pretty bad and took an Epsom Salt hot bath. I almost felt worse after the bath and went to bed.
This morning I felt pretty 'ok' and managed to spend some time with my daughter, then came home and vacuumed a bit. I'm curious as to whether I had a "mini herx" last night or if it was a result of the whole 5 minutes of exercise that I "did".
Added note 8 pm: right around 5 pm tonight I began feeling very achy and weak all over as if I had been 'run over' all in a moment's notice. I started to think that it could be my "normal" shakes that I get when my blood sugar is going low before a meal. I tested and sure enough that's what it was. So ... now when my blood sugar gets low, not only do I get the "hypo" shakes but I now get the "Lyme" aches! *sigh*
So many questions .... so few answers. :(
Monday, July 26, 2010
The blood test results from my 1st visit with my LLMD came back. He tested all sorts of things but these were the ones that were abnormal.
Rheumatoid Factor - normal is 0-20 ... mine was 22
I am assuming this corresponds to the arthritis symptoms that I am now having ... such as the swollen finger joint in my left hand. Will know more at my next visit when Dr. K. actually goes over these results with me!
DHEA Sulfate - normal is 35-430 ... mine was "low" at 81
Vitamin B-12 - normal is 211-911 ... mine was "low" at 300
Vitamin D - normal is 30-89 ... mine was "low" at 29
I have already begun taking Vitamin D supplements on my own and will also purchase DHEA and the Co Enzyme B Complex supplements per his recommendation. More pills to swallow everyday ... just what I needed.
Sunday, July 25, 2010
After we got home from breakfast at Cracker Barrel this morning, I was so very sleepy that I just could not wait to go back to bed. Granted, I was still awake at 1:00 a.m. and got up at 6:00 a.m. So, around 1:00 p.m. I laid down and took a two hour nap. Once I got up I felt a bit weak and woozy so gave myself some time before starting our dinner.
After dinner, I still felt a bit questionable and then I started getting a headache. Just curious as to whether something is starting the beginning of another herx. The only thing "new" I have started is the Diflucan for this "so-called" yeast infection that I described in my earlier post from today.
This is only my 2nd day of taking the Diflucan so if it is possible to herx from it, then tomorrow would probably be worse. Guess I will just have to wait and see how this plays out.
Well, I considered not posting this very personal information but since the whole idea of this blog is to journal for my own reference as well as to share my experiences with others, here goes!
In the past day or two, I have noticed discomfort, swelling, redness and a couple of small lumps on one of my labia. This does not feel or look like a typical yeast infection that I have had during antibiotic use many times before. However, it could very well be from the heavy doses of not one but two antibiotics (abx) that I am currently taking.
Whatever the case, it is at least uncomfortable and no doubt worrysome! I have started my reserve Diflucan (anti-fungal) abx to see if that will clear this newest issue up for me. I sure hope so! If not, I suppose that I will be making a doctor's appointment early this week.
Other than this new annoyance, I have been feeling quite well physically the past few days and for that I am blessed and thankful!
Wednesday, July 21, 2010
Well, apparently I was just herxing from adding the 2nd antibiotic to my treatment because yesterday and today have been so much better, pain-wise! My fingers in my left hand are obviously already full of arthritis so I don't expect them to get any better but my aches are gone and even my spine pain is very minimal! THANK GOD!!!
If a couple of days of pain when adding medications means that the bugs are dying, then I think I can do this!
I have recently re-connected with a childhood friend through Facebook! Imagine our surprise when we discovered that we both have Lyme! She has been fighting it for about 5 years or so and is just about to the point where she is thinking she can end her treatments! She has been such an encouragement to me and I am so thankful that I have her to lean on!
Saturday, July 17, 2010
Yesterday was a bad pain day for me. Really the past two days. I've had quite a bit of lower back / spine pain and lots of flu-type body aches again all yesterday and last night. Took two hot tub baths to try and help a bit. Emotional stress and heartbreak sure didn't help any. I am thinking that these increased symptoms are another "herx" from adding the 2nd antibiotic to my regimen. It is the 3rd to 5th day which is common for a herx.
Praying for a less painful day today ... mostly emotionally. :(
Wednesday, July 14, 2010
I got the call from my PCP's office with the results of my Western Blot test that was done on Friday. (By LOCAL lab!)
There are two areas of the test .... the IGG and IGM.
IGG - I had 1 positive band .... CDC requires 5 bands out 10 to consider it "positive"
IGM - I had 1 positive band .... CDC requires 2 bands out 3 to consider it "positive"
Here lies the problem. I don't fully understand all of it but the controversy is this. Many thousands of people are ill and becoming disabled due to the under-diagnosis of Lyme! Why? Because of the flawed testing as interpreted by the CDC. How can you just have "a little" of any disease? If the bands are included in the test and they test as "positive" then you have a positive result. Right?
Lyme is a very complicated and multi-faceted disease. It can be the basis of many diagnosed illnesses such as Rheumatoid Arthritis (RA), Lupus (SLE), Chronic Fatique Syndrome (CFS), Fibromyalgia, Multiple Schlerosis (MS) and the list goes on! I cannot understand and have not found sufficient explanation as to WHY our government hasn't changed the testing protocol but it is believed to be money-driven. (IMAGINE THAT?!)
So ... what to do? Thankfully there is a lab in California ... IGENEX ... that does a more detailed Lyme test which includes many bands! It is a much more conclusive and reliable test but only the most Lyme Literate doctors (LLMD) are using this lab. However, even with IGENEX, testing is not always conclusive as is the quandry with the ever-elusive Lyme bugs. Many times there are numerous co-infections ... meaning basically that you "catch" whatever other "bugs" the tick was carrying with it!
So ... although my 2nd test through my PCP's office, did show a "positive" band on both areas of the test, I am anxiously awaiting the results of my IGENEX testing which was done on Monday.
Tuesday, July 13, 2010
Today I have had more hip, lower back / spine pain which makes my whole leg hurt. It's worse today than it was yesterday. Still pain in my fingers on both hands now and pains in my legs sporadically! I am starting to feel like I'm slowly becoming an invalid. Praying that this is just more of the symptoms coming "out" from the antibiotics killing off the "critters". Sure can get discouraging right now though. I tried to take a walk down the street but that didn't help any. I'm so afraid that I'm going to lose more muscle mass and strength if I hurt too much to walk around. :(
Yes, I am posting this a day late! Yesterday was my 46th birthday ... and I feel more like 60 than 46. I was blessed with a nice evening spent with my wonderful hubby, two precious daughters, one of my future son-in-laws and a precious call from my grandbaby Jenna! She greeted me by singing "Happy Birthday" to me over the phone! What a blessing that was!
My day began with a phone call from my LLMD's office. My 1st appointment was scheduled for July 30th but they had a cancellation at 11:20 on my birthday! What a gift to be able to get in to see him a couple of weeks early!
The doctor and his staff were very nice. He spent a full hour with me, going over all of my symptoms, examining me and drawing a ton of blood! WOW, I was weak and woozy after that .... surprised I had any left in me! LOL!
The blood will be sent to IGENEX (the lab of choice for Lyme) in California. I had to pay the lab in advance ... $260.00. The doc looked at my hands and fingers and said that I do have signs of early Arthritis. He saw things that I hadn't noticed in my fingers.
He also said that I have an inflammatory process going on in my body ... an auto-immune response in which for some reason, my body is attacking itself. He never came out and said for sure it is Lyme but he has started me on the protocol for Lyme Disease.
I received 5 prescriptions for meds and had to purchase 4 supplements which alone totalled $177.20. Thankfully, the 3 prescriptions that I had to fill immediately only amounted to about $17.00 in co-pays.
He also stressed the importance of changing my diet. Absolutely NO GLUTEN, or DAIRY .. this added to my diabetes diet of NO SUGAR or CARBS doesn't leave much to eat! I think I'm going to start "grazing" in the yard .... but only where there are no ticks! ;o)
So now, I have to figure out when and how to fit all of my new meds into my day along with the 6 pills that I already take daily! Hey, maybe I won't be hungry anyway after I fill up with pills! :o)
I will wait for the lab results which will likely take a couple of weeks and my next scheduled appointment with my Doc which is August 24th.
As far as symptoms, I have become painful again the past couple of days. Don't know if it is from changing over from plain Doxy for 10 days to my current Doryx ... and / or the one day "off meds" in between or what?
My hands and fingers continue to hurt and ache and now my lower back and hip have been painful. It was very difficult driving so far to and from Franklin yesterday ... hard to hold the accelerator pedal down for so long. Getting some sporadic pains in my calves and shins again as well.
That's it for now!
Sunday, July 11, 2010
Friday, July 9, 2010
Ok, my PCP is back from vacation and saw me this afternoon. She was very nice ...
listened thoroughly and was very open to all I told her about my symptoms and my investigations into Lyme. I withheld some of what I've learned so as to not make her feel like I don't trust her. I did tell her about the popular opinions with lab testing and that the preferred is Western Blot, and even mentioned Igenex.
After my rundown of all my symptoms and of course being able to show her my swollen finger joint ... she does clinically think that I have Lyme. She refilled my abx for another 20 days which would make a total of 30 days in all since I just completed the 10. She stated that the current recommendations is for the dosage I was on (100 mg 2x daily) even though I mentioned that I had heard that wasn't strong enough ... but again, I didn't want to seem pushy with her. She and I went to school together and there is no need to make her feel like I don't trust her care. I know she is doing all that she legally CAN do for me.
Anyway, she did send me down for another blood draw and specifically requested the Western Blot this time ... although she wasn't sure if that would "work". Also, it may be that the insurance won't cover it but we'll find that out later. I never mentioned my upcoming appt with a LLMD for the 30th of this month and I won't at this time.
Most importantly, she refilled my abx through the next 20 days which will get me to my LLMD appointment ... so that is sufficient! I am anxious though to see if the lab WILL run the western blot this time and also if it will show any IND or Positive bands.
Thanks to my knowledge gained from various web sites ... I did know to ask for the Doryx instead of just Doxy ... to help with tummy issues. I was SHOCKED when I found out how much it costs!!! TWENTY days worth ... 40 pills .... total cost was $405.89 ... thank GOD, my insurance co-pay was only $50.00. It must have been because there wasn't a generic for the Doryx! WOW!
Edit: Ok, the Doryx is the "name brand" of Doxy ... but Doryx is delay-released so it is easier on the tummy!
Thursday, July 8, 2010
Just wanted to post that yesterday and today have both been good days for me! I've felt well and gotten things done around the house finally! My hands and fingers still hurt some and I get a bit weak and tired now and then but so much better than I was feeling last week!
Today just as I was about to head out the door to have my Lipoma (on chest) removed, the surgeon's office called and cancelled my surgery. The doctor was called into emergency surgery at the hospital. It really threw me for an emotional "loop" there for a few minutes and I broke down but now I feel like I am actually a bit relieved.
I was having bad anxiety while waiting to leave for my appointment and I just really believe that things happen for a reason. So maybe the timing just wasn't right to have this Lipoma removed so I didn't even reschedule the appointment for now.
Tomorrow, I see my PCP to discuss my Lyme "diagnosis" and see what she thinks about all of this. WISH ME LUCK! ;o)
Tuesday, July 6, 2010
First thing this morning, my PCP's office did return my call and my doctor set me an appointment to see her on Friday at 1:15 p.m. I am relieved that my message did get to her and they called me back promptly!
Today, I was sort of forced to go shopping because we had to take our dog, Matilda, to the groomer's and my hubby had to go to the dentist. I had a couple of hours to kill so I went shopping. Normally, that would be a good thing but today I just wasn't "up to it". Mostly, I was just too tired and I began to get achy all over. I just really wanted to get home and lie down. Another thing, I felt depressed as I was looking at items. I found myself thinking that I shouldn't be shopping for decor for my home because I might not live much longer. What a horrible way to feel and think!
I think there has just been so much death (my grandbaby at 9 weeks) and illness around me lately and with me having this chronic new illness, that I just really feel like we are all dying! I hope and pray that God will take hold of these hopeless thoughts and give me a heart and spirit of Faith and Hope again!
Another thing weighing heavy on my mind is a speech problem I have had here lately. I can't remember how far back it has gone but I do know it's bad recently. An example is something that I said today. My husband and I were leaving the house to go to town. As I walked down the sidewalk, I noticed that some of my new flowers were very wilted. I said, "my flowers look awful, I need to iron them when I get home"! My husband didn't even say anything and I know he had to have noticed what I said. Lately he has kidded me about some of the crazy things that have gotten mixed up in my speech so I know he was just taken back and didn't dare say anything.
I don't know if this is another Lyme symptom or what but it feels like my Mom's Alzheimer's! :(
Monday, July 5, 2010
Well, I got up feeling pretty good so I decided to take advantage. I did lots and lots of vacuuming, mopping and carpet spot-cleaning. By the time I was done ... I was DONE! I was a stinky, sweaty and exhausted MESS!
This evening I have been pretty tired out and a bit achy. Not achy like I was a few days ago but just more of a over-worked type of achy. I have been getting sharp pains in the fingers of my left hand again though. The ring finger is the worst ... sharp shooting pains down it. The swollen joint on my forefinger hasn't changed one bit either.
Tomorrow is the day that my PCP gets back in her office. I left a message for her to call me ... I sure hope she does! I'll be sitting by the phone waiting anxiously all day. I am very nervous about how she will react when I tell her that although my Lyme test was negative, I'm sure I have it! You see, there is major controversy around lab testing and interpreting the tests for Lyme. It's over my head and far more than I want to try to explain here on my blog. There are many good links online though to find out more about it!
Basically it has to do with the CDC standard for what they consider positive results but there is a lab called IGENEX that does more specific testing ... and they are apparently the lab of choice for Lyme Disease patients. I will find out when I see my LLMD (Lyme Literate MD) at the end of this month.
Sunday, July 4, 2010
Independence Day ... how fitting! I was determined this morning to get up and be independent of my bed! My legs seemed to function pretty normally again this morning and I wasn't nearly as achy!
Hubby and I went to town and had lunch and I even enjoyed shopping for a while in my favorite store, Kirklands! After a bit, I did get weak and tired and ready to go home but I was so relieved to have had a better semi-normal day again!
Once we got home, my chest had a strange achy / burny feeling and my eyes felt burny as well. I took my temperature and it registered at 98.9. This was after I had given myself time to cool off a bit and rest on my bed. This could very easily be considered a low-grade fever for me compared to my usual temps.
This morning, I had even more difficulty walking and my husband witnessed it this time. I broke down in tears in his arms because I feared that I would never walk correctly again! Again, I had the lower back pain and weak feeling in my hips. My left ring and middle fingers were sore again especially when trying to type on my computer.
By afternoon and evening I seemed to have less pain than last night but did feel a bit weak and woozy by bedtime. Hopefully this means that the "herxing" was about over and maybe the "critters" were dying!
Upon waking this morning and getting out of my bed, I had a terrible time walking! My legs were extremely weak and wobbly and I walked as though I had something like MS. It felt like my legs were going to "give out" on me at any moment. My lower back / spine area and hips ached and pained terribly! By supper time I had a very bad headache and stiff neck and my legs were aching terribly again. This by far is the worst day I've had yet!
This happens to have been Day #4 of my antibiotic treatment. I have since learned that this feeling much worse is called "herxing". It is when the Lyme bugs are dying off and releasing toxins into your body. It is "normal" to feel much worse during this time and I certainly did!
Today I decided that I was tired of spending two days in bed and that I would force myself to get up and "make myself useful." I vacuumed quite a bit around the house but eventually began feeling very ill again.
I had achy calves, pains in my left shin, pains in the ball and middle toe of my left foot, body aches, back aches and pain, twitching in the left side of my face, pain and soreness in my left ring finger - hip pain, sporadic muscle twitching in my legs and shoulder and left side of my face. It became increasingly difficult to walk due to the pain in my shins and calves.
For these two days, I stayed in bed all day with really bad body aches and weakness. I had muscle pains all over but more severely in my calves, shins, chest and shoulder (left side where lipoma is located). I was very weak and felt horrible.
After joining two different online groups of Lyme sufferers, I was told to stop my steroid pack and I did. Steroids suppress the immune system and they did immediately take the swollen nodes down from the back of my head. The lymph nodes swell when fighting infection so it made perfect sense to me that by reducing the inflammation of these nodes, that I was indeed suppressing the healing process! By doing this, I would be allowing the Lyme toxins to take a firm hold in my system!!!
First thing this morning I put a call into my doctor's office. My regular doctor had no openings so I made an appointment with a Nurse Practitioner. She had blood drawn for Rheumatoid Arthritis, Rocky Mt. Spotted Tick Fever, and Lyme Disease. She wrote me prescriptions for 10 days of Doxycyline (2 x 100 mg. per day) and a dose pack of steroids.
By evening, I was having terrible flu-like body aches and pains in all of my joints and muscles and I had weird zapping pains in different areas of my body. I felt absolutely horrible and as though I would have a very high fever but when I checked it was only about 98.8. I do tend to run below "normal" temps so this might qualify as a "low grade" fever for me.
Strange things are beginning to occur .... very freaky to say the least! All of the sudden today, I had a sharp pain in my right ring finger and within seconds, I had a blue streak and bruise at the base and alongside the center of my finger and it hurt like heck! Within about a half hour, I had the exact same sensation in the ring finger on my OTHER hand! No bruising but the same pain!
By bedtime, I had a very sore and tender area under my left earlobe ... no bumps or swollen glands just very sore.
On the 27th, I experienced what felt like a blood vessel popping in my eye also! I ran to the bathroom expecting to see something but thankfully there were no marks! Throughout the day, I had continued pains in my fingers and my knees felt like they were going to "lock up" on me whenever I bent over for anything.
Just before bedtime, I looked down at my hand and discovered that a large bump had literally popped up suddenly on the knuckle joint of my left index finger! By this time, I was really freaking out and in tears. My husband had seen the bruised finger and heard all of my complaints but when he saw this swollen joint, he became concerned as well. There was now visual PROOF that something was going on inside of me!
June 21st, I experienced strange sharp pains in the bottom of my right foot throughout the night. No reason to think I had injured myself and it was very annoying while trying to sleep.
June 24th, I discovered a large swollen lymph node on the back right side of my head and my neck felt very stiff and the node was sore! I later discovered a small pea-sized swollen node under my chin on the right side as well. This was just very troublesome as I was still a bit concerned about that lump (lipoma) in my chest!
June 25th, I had an appointment with a surgeon to discuss removing the fatty lipoma since it was causing me discomfort. I was glad that I already had an appointment scheduled since these two glands had suddenly popped up since last night! Dr. Beaird wasn't sure what to think so he scheduled an ultrasound of the back of my head for 30 minutes prior to my surgery appointment set for July 8th.
Today I got the results of an ultrasound I had done of a lump I have noticed for quite some time in my chest. I had recently had my yearly mammogram which came back fine but this place is above my breast tissue and causing me discomfort so I decided to get it checked.
The ultrasound came back as it being a benign fatty tissue or Lipoma. I am relieved that it is only a fatty tumor and not cancer! Thank you, Lord!
Somewhere around May 22, I noticed one single bite on my belly just below my navel. It was slow to heal and I kept accidentally scratching it open and it would bleed. It was itchy and the center of it was deeper with raised edges. Eventually it scarred over and healed.
Other than noticing it, I never gave it much attention as to what type of bite it was but did think it strange to only have one single mosquito bite on my entire body. On May 24th, my precious second granddaughter, Airiana, passed away suddenly from SIDS at only 9 weeks of age. This was a devastating time for our family, so the least of my concerns was this bite!
Rest in peace, our precious Airiana Layne ... with our Lord Jesus ... until we meet again!