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!