tag:blogger.com,1999:blog-55238449720061756912024-03-13T10:19:08.830-05:00Afflicted By LymeThe first week of June, 2010 I began having headaches .. by June 21st, an array of strange symptoms began. This blog will outline my journey with Lyme Disease. Whimpurrhttp://www.blogger.com/profile/03969421725576756740noreply@blogger.comBlogger78125tag:blogger.com,1999:blog-5523844972006175691.post-60147577788748288892012-07-08T17:18:00.002-05:002012-07-08T17:18:50.706-05:00Symptom Update Before I Get My MRI ResultsBecause I had called and requested to find out the results of my MRI before my next appointment, I got a call this week. The receptionist at the Neurologist's office briefly told me that my report said there where white matter spots and also a mild bulging disc. That is all she could tell me until my follow-up appointment this Tuesday (July 10).
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In the meantime, I have had continuing symptoms. Although the past two days, my headaches haven't been as bad, I am having worse balance / walking issues. Also, while eating at Cracker Barrel this weekend, I suddenly dropped my fork because my right hand went numb. On the way out of the store, I almost fell as I lost my balance while reaching for the door to leave. A brand new symptom is a buzzing / vibrating sensation that I had in my ankle or heel of my right foot as I took steps and put weight on it. Very strange indeed!
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For now, I have been reading and reading and reading all the sites I can find online that have the symptoms I am experiencing and as usual, it is always Lyme and / or MS that comes up with the closest match. At this point, I just want to know WHAT it is that I have!!!Whimpurrhttp://www.blogger.com/profile/03969421725576756740noreply@blogger.com5tag:blogger.com,1999:blog-5523844972006175691.post-35242958235756559652012-07-01T21:16:00.000-05:002012-07-01T21:16:01.119-05:00Update Since 1st Neuro AppointmentI saw the NP at the Neurologist's appointment on June 21, 2012. While going over all of my symptoms, just as predicted by other people in the Lyme community, she basically laughed and said that it is SO RARE and mostly in the Northeast of the USA. Yea, same song and dance as what I was told! *sigh*<BR><BR>
What could I do? I need serious help so I just continued to tell her all of my most recent symptoms .... terrible shooting pains basically everywhere in my body, weakness in my back and hips, and most troubling, more balance issues! She did her neurological exam but I was shocked that she didn't do anything with me standing to check my balance. WHY NOT? I have "no idea"!
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So, although her exam puzzled me and she definitely wasn't buying the Lyme Disease suggestion, she did order lots of bloodwork and most importanly an MRI of my brain and spinal cord (cervical). She also gave me a prescription for Gabapentin (generic of Neurontin) to help with my pain and told me to come back in a month in order to give the pre-cert and all labs time to be completed.<BR><BR>
I had my MRIs done on June 28, 2012 ... boy, were they nervewracking! I was told it would probably be Monday (tomorrow, July 2nd) before the results would be back. In the meantime I had my follow-up appointment with the neuro moved up to July 10th! I did NOT want to wait an extra 2 weeks to get my results!<BR><BR>
Since my 1st neuro visit, just over a week ago, I have had lots of pain and more troubling symptoms. I have a bad headache pretty much daily with lots of sharp stabbing pains in my head, temple, around my eyes and even in my face at times. I have also had what I would call a mild stiff neck although my neck / back of head/ muscles are very sore when I turn my head from side to side. I am so worried that I have some type of meningitis forming and almost went to the ER one night. It took 2 Ibuprofen and 2 pain pills to finally make it better enough to where I didn't feel like I was in a life-threatening situation!<BR><BR>
Thankfully, today I had a little more energy but now my lower back has been hurting significantly all day and at one point my right knee was as well. Right now (bedtime) I am starting with my daily / nightly headache so it is time for my pain medication.<BR><BR>
I am assuming that if something really bad showed up on my MRI that someone would call me ASAP to let me know! Praying that I don't get that call!!!<BR>Whimpurrhttp://www.blogger.com/profile/03969421725576756740noreply@blogger.com0tag:blogger.com,1999:blog-5523844972006175691.post-61144557998949461512012-06-14T15:33:00.002-05:002012-06-14T15:34:50.265-05:00Last Visit With My LLMD - 6.07.2012<BR>Well, after going to a walk-in clinic for my horrendous rash, I was told that they wouldn't treat me and that the prescribing doctor for the Doxycycline needed to be the one. So, the NP actually called and made an appointment for the next day for me to See Dr. K. in Franklin.
I was very disappointed because Dr. K just walked into the room, didn't even sit down, quickly looked at my arms and said, "Yep, that's a Doxy rash ... see them all the time!" Ummm, ok! No comments, no advise, no further treatments suggested?<BR><BR>
I asked about my labs and he basically said that everything was fine and since the tick came back "normal" then I was good. No explanation for my symptoms ... when I asked about them, he simply said, "I have no idea." I tell you, it also sounded like "and I really don't care" either!<BR><BR>
He said that if I wanted to talk more that I needed to schedule a follow-up appointment so with that, I left and felt very "let down". I knew the first visit this time that he seemed like he didn't really want to deal with another Lyme Disease patient / case and I guess I was right. Apparently he has (over the past two years) experienced some major burn-out with Lyme and co-infections and the mystery that it all entails! <BR><BR>
So here I am ... all the same symptoms when I first was bitten and tested POSITIVE for Lyme through IGENEX over 2 years ago but because my labs were "fine" then I'm on my own??? The past several days ... ever since taking my last Medrol pill (steroid) ... I have been very achy and painful again and have experienced weakness in my hips, lower back, spine and legs! Something is still WRONG! Maybe the ONE tick I sent off this time was negative but I was bitten by at least THREE others that I pulled off of me during the same week! One of them could have easily re-infected me OR they just stirred up the dormant Lyme Disease already in my body. I admittedly quit my Lyme antibiotics therapy just before the holidays during my first infection because I was so tired of it! Up until RIGHT AFTER this last TICK BITE, I had been doing pretty well. I would still get random pains and muscles twitches but nothing like I am having again NOW!<BR><BR>
Since I no longer have a "LLMD" and there is not another one that I know of in the state of Tennessee, I have decided to see a neurologist! People in the Lyme community have warned me NOT to do this because most do not "believe" in chronic Lyme infection but I want a thorough neurological exam and maybe I can start ruling out things at least!<BR><BR>
My GP got me an appointment with a local neurologist one week from today on 6.21.2012. I am so thankful!<BR><BR>Whimpurrhttp://www.blogger.com/profile/03969421725576756740noreply@blogger.com0tag:blogger.com,1999:blog-5523844972006175691.post-4840747535235369632012-05-31T13:45:00.000-05:002012-05-31T13:45:41.124-05:00Stopped the Doxycyline Due to RashI took the Doxycycline for 3.5 weeks but finally had to stop it. I developed sun sensitivity and heat / cold intolerance and eventually broke out in a red bumpy rash that developed some blistering. I am still quite achy and am having lots of tingly, burning and sharp pain sensations pretty much all over my body. I have even had sensations in my face and eyes which I do NOT like AT ALL!!!<BR><BR>
At this point, I am as confused, frustrated and upset as ever! I had cancelled my upcoming LLMD appointment just out of disgust with antibiotics but now I know that I need to continue treatment as I am still very symptomatic. I just don't know WHAT we should treat at this point! *sigh* On one hand, I just want to try to forget about it all and just see what happens to me but on the other hand, I realize that putting off treatment isn't going to make it go away and it could likely make it worse and more difficult to treat down the road.<BR><BR>
THIS REALLY STINKS!!!!!!!!!!!!!!Whimpurrhttp://www.blogger.com/profile/03969421725576756740noreply@blogger.com0tag:blogger.com,1999:blog-5523844972006175691.post-10821620131973714722012-05-24T14:08:00.000-05:002012-05-24T14:08:41.612-05:00A Whole New Can of Worms ... Not Good!I got the results from the blood tests that my LLMD did last week. Everything sort of "Lyme related" came back negative. However, I tested positive for chlamydia pneumoniae (CPn). You can imagine my first reaction was, "Clamydia ... WHAT?" (lol) well, this is different ... this is Chlamydia PNEUMONIAE which enters the body as a respiratory infection and can cause pneumonia. YES, I was hospitalized for 13 days with double pneumonia and sick at home on oxygen therapy for a couple of months back in 2004.<BR><BR>
Ok, so what is the big deal and why did my LLMD test me for past pneumonia? Well, apparently CPn is a very nasty bug (just like Lyme) and is extremely hard to rid from your body. It has been linked to many other illnesses including Rheumatoid Arthritis, Multiple Schlerosis, Chronic Fatigue Syndrome, and even Alzheimer's Disease. So, although I have not spoken with my LLMD about his opinions, I am "guessing" that much of my pain and neurological symptoms may in fact be related to lingering CPn infection instead of or in addition to Lyme Disease. I have to question though, didn't I truly have Lyme Disease 2 years ago when I started this blog? I had a VERY "postive" test result from IGENEX labs and classic symptoms PLUS I had the BITE! What I am going to suppose at this point, is that when I became infected with Lyme in 2010, it may have activated the CPn ... OR, this most recent tick bite (2012) stirred things up and activated the CPn? I know that my LLMD said he was testing things to see if the tick just caused an immune response so I'm thinking my "theory" makes sense. *sigh*Whimpurrhttp://www.blogger.com/profile/03969421725576756740noreply@blogger.com0tag:blogger.com,1999:blog-5523844972006175691.post-1386276670563331342012-05-24T00:32:00.000-05:002012-05-24T00:32:18.073-05:00Update 5.23.2012I got the lab results from IGENEX on the tick that I sent off and it was negative for Lyme. My LLMD expected that it would be, that is why he is already testing me for co-infections that I could have gotten from this tick. (Of course I had been bitten by 3 different ticks during the same week ... the one I sent off was just the one that had been attached and engorged on me for a lengthy period of time.)<BR><BR> I am definitely have more symptoms again. Today I have had body aches again and lots and lots of joint / bone cracking and popping. It is so weird, almost anytime or part of my body that I move, I hear a cracking sound! I am still having a pain and sticky sensation in the corner of my right eye as well. I'm not sure if the Doxycycline is pulling out more symptoms through die-off the bacteria or what is going on. I have now been on the Doxycycline for 3 weeks.Whimpurrhttp://www.blogger.com/profile/03969421725576756740noreply@blogger.com0tag:blogger.com,1999:blog-5523844972006175691.post-13970180432117424632012-05-17T21:03:00.000-05:002012-05-17T21:03:07.642-05:00Back to the LLMD .... 5.17.2012<BR>Today I saw my LLMD again after a year and a half. He is having me continue with the Doxycycline 400 mg. per day for the next two months at which time I will see him again. In addition he gave me Nystatin and Diflucan to help with yeast and also recommended a couple of supplements as well. <BR><BR>
I had my blood drawn today to also check for co-infections and based on those findings, he may prescribe other antibiotics. I am also still waiting to get the results from the tick test to see if it was positive or negative for Lyme. I didn't have it tested for anything else so the test won't really be totally conclusive but at least my LLMD is testing my blood for co-infections.<BR><BR>
My doctor said that it is also possible that even if this tick didn't have Lyme Disease, that it also just carried enough other infections that it caused an auto-immune response that made me symptomatic again. Anxious to see what my labs tell.<BR><BR>Whimpurrhttp://www.blogger.com/profile/03969421725576756740noreply@blogger.com0tag:blogger.com,1999:blog-5523844972006175691.post-22463335369417838282012-05-07T17:16:00.001-05:002018-06-13T19:46:30.133-05:00More Symptoms and Pictures to Prove Them!Oh, boy! I have now found a total of FOUR ticks on me in the past few weeks! Three of the four have bitten me! As far as symptoms, I continue to get sharp pains in various places ... my toes, bottoms of my feet and various joints and muscles. The rash on my breast that I mentioned in my last post is still very visible!
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In addition to this rash, I today noticed a new cyst, nodule, "bump" on my right wrist! This looks and feels exactly like the nodule that "popped up" overnight during my original infection with Lyme two years ago. In order to keep from having to search back to those pictures, I will repost the finger nodule first below and then the new nodule on my wrist that I discovered today.<BR><BR>
Finger Nodule from 2010:<BR><BR>
<a href="http://tinypic.com?ref=eq35v7" target="_blank"><img src="https://i48.tinypic.com/eq35v7.jpg" border="0" alt="Image and video hosting by TinyPic"></a><BR><BR><a href="http://tinypic.com?ref=23vl0s4" target="_blank"><img src="https://i48.tinypic.com/23vl0s4.jpg" border="0" alt="Image and video hosting by TinyPic"></a><BR><BR>
New Wrist Nodule - 5/07/2012: <BR><BR><a href="http://tinypic.com?ref=mpjxv" target="_blank"><img src="https://i45.tinypic.com/mpjxv.jpg" border="0" alt="Image and video hosting by TinyPic"></a><BR><BR><a href="http://tinypic.com?ref=29f80tc" target="_blank"><img src="https://i49.tinypic.com/29f80tc.jpg" border="0" alt="Image and video hosting by TinyPic"></a><BR><BR>
So, my confirmation that I have indeed been re-infected with Lyme Disease is becoming more validated each day. :(Whimpurrhttp://www.blogger.com/profile/03969421725576756740noreply@blogger.com0tag:blogger.com,1999:blog-5523844972006175691.post-3367764954256614142012-05-05T15:23:00.001-05:002012-05-05T15:23:52.034-05:00<BR>Symptom update: It isn't taking long to remember all the "crazy" symptoms that Lyme and co-infections can give a body! I have already had, terrible body aches which feel like I have the flu, cracking and popping in my neck and jaw, increased joint pain, a few fairly mild muscles twitches thus far and lots of the "creepy crawlies" ... feeling like bugs are crawling on me.
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Also, last night, I discovered a red bump on my right hip that looked like another tick bite! Could be another one or possibly one of the "rashes" that are common to occur after you are initially infected. The most disturbing thing that I am kind of freaked about is a large red and itchy rash on the areola of my right breast. It started probably close to a week ago and has gotten worse instead of better! I've only been on my Doxycyline for 2.5 days so I can't blame it on that! My main concern is breast cancer or something. Probably just a heat rash but the timing stinks! :(
<BR><BR>Whimpurrhttp://www.blogger.com/profile/03969421725576756740noreply@blogger.com0tag:blogger.com,1999:blog-5523844972006175691.post-84437724072948891632012-05-03T20:40:00.002-05:002012-05-03T20:40:59.317-05:00Back on Antibiotics .... Doctor Appt. ScheduledWell, here I go again! Dr. K moved my appointment up to May 17th at 12:40 PM, so that is a relief! His first opening was June 4 but when he got word of what happened, (a new tick bite that was engorged) he bumped me up! He also called me in some Doxycycline to get started on killing the Lyme beasts right away! I am to take two 100 mg. tablets twice per day for a total of 400 mg. per day. The script is for 30 days for now but guessing I will probably have another antibiotic added at my visit on the 17th.<BR><BR>
As far as symptoms, I was very achy today, a very painful and familiar feeling of what Lyme felt like 2 years ago. Not something I ever wanted to have to "remember" again but at least this time I am into treatment just barely over a week post-bite where last time it was about 6 weeks after!!! <BR><BR>
The bruise on my thumb is barely visible now so I am thankful that I took pictures of it right away! Also, I am sending the TICK off to IGENEX Lab in California to be tested for Lyme! It only costs $65.00 for the testing and is most definitely WORTH IT to know for sure if this tick carried Lyme!!! Pretty sure it did since I have symptoms again but it's always good to have proof to show for your illness ... particularly with the controversy that still surrounds Lyme Disease in Tennessee and surrounding states! My pharmacy questioned the high dosage prescribed but when I explained it was for Lyme Disease, she filled it without further question.<BR><BR>
Just to show how prevalent ticks are already this season, I had to pull a tick off of my good friend today! It was attached and so tiny she couldn't see well enough to remove it herself. I warned her to be sure to act quickly if she feels ill in any way in the near future!!!<BR>Whimpurrhttp://www.blogger.com/profile/03969421725576756740noreply@blogger.com0tag:blogger.com,1999:blog-5523844972006175691.post-45369264198884258872012-05-01T17:05:00.002-05:002012-05-01T17:28:02.383-05:00Bitten Again TWICE already this season .... Lyme is back?Well, I have already pulled two ticks off of me this season. On March 17, 2012, I pulled a tick off the top
of my right ankle. It hadn't been on me for long so I had hoped it hadn't had a chance to re-infect me. However,
I awoke at 12:30 a.m. on April 23, 2012 to find a tiny tick already stuck and engorged on my belly! It was only inches from my original bite that prompted this web blog and caused my journey with Lyme Disease. <BR><BR>
Unfortunately, today (one week after the second bite) I have what is strangely reminiscent of one of my very first "strange" symptoms when I first became ill with Lyme two years ago. While out at the barn today, I broke a carrot stick in half to give to my horse. As soon as the carrot broke, I got a sharp pain in my left thumb and it immediately bruised .... a broken blood vessel just exactly like I got at the beginning of my Lyme infection almost exactly two years ago! I am very upset at the thought that I may be battling this disease yet again. If indeed I am, then I am going to make sure and document every single thing as it happens! To start, I will be posting pictures of this bruise on my thumb, below.<BR> <BR>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhASU5411ca-wZG4wy_vBRAWgS5tZ6guL9b2CEVhaNmt9favMnWAwspH4__Gu9TVroXLZIBl12F41xzbhNG6Inui-pI4oxCCqGQDwxHE94-EPLEwTrbi4_tUAfhzZ5fGJ3a-eLitR2sEBr/s1600/Sam_1698sm.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="241" width="336" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhASU5411ca-wZG4wy_vBRAWgS5tZ6guL9b2CEVhaNmt9favMnWAwspH4__Gu9TVroXLZIBl12F41xzbhNG6Inui-pI4oxCCqGQDwxHE94-EPLEwTrbi4_tUAfhzZ5fGJ3a-eLitR2sEBr/s400/Sam_1698sm.jpg" /></a></div><BR><BR>
Just to prove how bad the tick population is this year in Tennessee .... also today while I was at the barn with my horses, even after having sprayed myself with a tick repellent containing DEET, I pulled a tick off of my neck! Yes, PULLED it off ... it had already started trying to attach! PLEASE BEWARE OF TICKS!!!!!!!!!!!!!<BR><BR>Whimpurrhttp://www.blogger.com/profile/03969421725576756740noreply@blogger.com0tag:blogger.com,1999:blog-5523844972006175691.post-22436590029845641342010-11-30T16:58:00.002-06:002010-11-30T17:07:02.689-06:00A Return of Symptoms?Well, it has been 24 days since I last took an antibiotic of any kind. For probably a couple of weeks nows, I have been having some vague leg aches but have been trying very hard to ignore them and haven't mentioned them to anyone. Somehow I hoped that if I didn't verbalize them, then they wouldn't be real and they would just go away.<br /><br />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.<br /><br />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.<br /><br />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. <br /><br />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! :'(Whimpurrhttp://www.blogger.com/profile/03969421725576756740noreply@blogger.com1tag:blogger.com,1999:blog-5523844972006175691.post-28773934476699773692010-11-16T10:08:00.004-06:002010-11-16T10:10:58.659-06:00Day 10 - NO MEDS ... updateThis is the 10th day that I have been completely medicine-free. I have been feeling great! The reason I am posting today though, is because I am getting a bit nervous. Last night at bedtime, I was a bit achy in my shins and calves again. I'm not sure if it was because of some things that I have done the past few days ... we did some painting and I also rode my horse a little while ... or if I am having a return of symptoms. I have also noticed some mild twitching again. This morning while sitting at my desk, my legs feel a bit weak again and I've had some twitching. I am SO scared that my Lyme and Co symptoms are coming back!!! I SOOOO want to be over all of this! :(<br /><br />I guess time will tell.Whimpurrhttp://www.blogger.com/profile/03969421725576756740noreply@blogger.com0tag:blogger.com,1999:blog-5523844972006175691.post-31541632968608678162010-11-09T19:36:00.003-06:002010-11-09T19:40:06.777-06:00Off ALL Meds .... for now!Well, I heard back from my LLMD's office today. His nurse returned my call and told me that Dr. K. agreed to my stopping ALL MEDS right now except for my pro-biotic! I am more than happy to do just that!!! There is no guarantee that I am "done with" Lyme or Co-infections at all but I am willing to take a break and just see what happens! I know that my stomach will be very happy about this as well!<br /><br />I will continue to blog and document any symptoms that I feel may be a continuance or reoccurance of Lyme and Co.Whimpurrhttp://www.blogger.com/profile/03969421725576756740noreply@blogger.com0tag:blogger.com,1999:blog-5523844972006175691.post-10153410532920072142010-11-08T17:42:00.002-06:002010-11-08T17:50:40.864-06:00Nausea + Panic Attacks = ER visitLast night was the final straw in tolerance for me. Feeling more nauseated and having major panic attacks throughout the day has taken its toll. Also, losing weight more everyday (though normally would be a great thing) was adding to my worries. Finally told hubby I wanted to go to the ER and have my liver checked! Because I have been on heavy long-term doses of Rifampin and it is known to cause liver dysfunction, I felt that I needed to be checked out.<br /><br />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.<br /><br />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!<br /><br />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!<br /><br />Although I don't enjoy them, just knowing that something NORMAL is occurring for once is such a relief!Whimpurrhttp://www.blogger.com/profile/03969421725576756740noreply@blogger.com0tag:blogger.com,1999:blog-5523844972006175691.post-51742943983633178152010-11-06T18:18:00.002-05:002010-11-06T18:21:17.533-05:00ANXIETY ..... I can't stand it anymore!!!I have been having anxiety for the past couple of weeks and it has gotten increasingly worse the past few days. Today, I have been anxious all day! I finally "gave in" and took just 1/2 of a .5mg Xanax .... laid down to take a nap and woke up with a panic attack one hour later (the same time I always awaken with a PA). I am coming unglued! I cannot handle these feelings anymore. They make me feel sick to my stomach and just nervous and scared and like I'm losing my mind. GOD, please make this go away!!! I just want to stop all treatments and be normal again!!! :'(Whimpurrhttp://www.blogger.com/profile/03969421725576756740noreply@blogger.com0tag:blogger.com,1999:blog-5523844972006175691.post-88235728976986211922010-11-05T20:51:00.002-05:002010-11-05T20:57:31.668-05:00Day 13 - Tinidazole Pulse (w/ Rifampin)Almost done with my 2nd week of this pulse of Tinidazole. Still taking the Rifampin with it as well. Main symptoms are still restless legs at bedtime and although I do get a few odd aches and pains, they are not enough to really call a herx at this time. I walked again for 25 minutes this morning on my treadmill and I have been lifting 5 lb. weights the past couple of days to try and strengthen my legs and arms. My achiness has mostly been from the exercise as far as I can tell!<br /><br />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. <br /><br />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! :(<br /><br />I am so tired of this disease!!!Whimpurrhttp://www.blogger.com/profile/03969421725576756740noreply@blogger.com0tag:blogger.com,1999:blog-5523844972006175691.post-52193089266014167342010-11-02T16:52:00.002-05:002010-11-02T16:55:20.550-05:00Day 10 - Tinidazole PulseToday my legs have been achy ... my left leg especially! I had to drive to town to vote and then to take hubby to lunch and my leg was killing me! Not sure if this is a herx from the Tinidazole or what.<br /><br />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. :(<br /><br />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! :[Whimpurrhttp://www.blogger.com/profile/03969421725576756740noreply@blogger.com0tag:blogger.com,1999:blog-5523844972006175691.post-46122317045257608902010-10-30T21:25:00.003-05:002010-10-30T21:34:49.404-05:00Update - Day 7 of Tinidazole PulseI 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. <br /><br />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!<br /><br />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! :DWhimpurrhttp://www.blogger.com/profile/03969421725576756740noreply@blogger.com0tag:blogger.com,1999:blog-5523844972006175691.post-79722299347247720112010-10-26T18:25:00.003-05:002010-10-26T18:29:18.373-05:00Day 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!!!Whimpurrhttp://www.blogger.com/profile/03969421725576756740noreply@blogger.com2tag:blogger.com,1999:blog-5523844972006175691.post-84923516770185836602010-10-21T08:08:00.004-05:002010-10-26T18:24:44.676-05:00Rifampin - 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*<br /><br />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!<br /><br />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!!!Whimpurrhttp://www.blogger.com/profile/03969421725576756740noreply@blogger.com0tag:blogger.com,1999:blog-5523844972006175691.post-19461127639810145592010-10-20T14:20:00.002-05:002010-10-20T14:20:50.029-05:00Day 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. :(<br /><br />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.Whimpurrhttp://www.blogger.com/profile/03969421725576756740noreply@blogger.com0tag:blogger.com,1999:blog-5523844972006175691.post-90059564321908042182010-10-16T22:18:00.002-05:002010-10-16T22:21:44.239-05:0014th 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!Whimpurrhttp://www.blogger.com/profile/03969421725576756740noreply@blogger.com1tag:blogger.com,1999:blog-5523844972006175691.post-40079099076941125522010-10-14T19:58:00.002-05:002010-10-14T20:06:46.533-05:00Herx Update - Day 12 of RifampinHad 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.<br /><br />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.<br /><br />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!<br /><br />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!Whimpurrhttp://www.blogger.com/profile/03969421725576756740noreply@blogger.com0tag:blogger.com,1999:blog-5523844972006175691.post-70329022836367678202010-10-13T11:07:00.003-05:002010-10-13T11:16:32.640-05:00Not 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.<br /><br />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!!!<br /><br />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. <br /><br />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!!!Whimpurrhttp://www.blogger.com/profile/03969421725576756740noreply@blogger.com0