I came across this forum back in the summer when I was diligently trying to find an answer, to the question of why I have felt terrible for so long. I'd just like to describe what I have felt over the past year and a half, and the discouraging and unfruitful path of finding the solution, in the hopes that it will at least feel good to describe my issues to a group which will truly understand them, like only someone who has experienced this adversity could. I feel like every day for the past year and a half I have been run-over by a Mack truck, in body and mind!!!
My ultimate goal is to find a LLMD, someone who will understand that what I fell is very real, and be as determined to fix me as I am myself. I live in My entire story follows, to show you why I truly need this doctor. I know the story is long, so if anyone takes time to read this and understand me, I really appreciate it. All i want is to be me again.
Starting in the summer of 2007, I can't remember an exact day or moment anymore, I suddenly found myself in a bout of debilitating fatigue, muscle weakness, and complete lack of vitality and energy. It was so impairing that I distinctly remember having a difficult time even climbing the steps at night, to go to bed. I knew something was not right, and I went in to see my family doctor, who actually did test me for Lyme as one of the first things, since I told him I spend much of my free time hiking with my golden retriever, or working on a horse farm helping take care of my best friend who I'm lucky enough to own there. The test came back negative, of course, with a bunch of other negative tests. Nothing could explain me so far.
I tried just "putting up with" the symptoms, not complaining and just trying hard to go about my life. The problem was, I just couldn't. The symptoms kept progressing, soon my mind just was not working right, and my GI was so upset. My brain always felt so terribly foggy, and I was unable to concentrate, focus, or even think intelligently and clearly, and I couldn't speak as intelligently or witty either. My GI felt like someone was squeezing my insides.
One of the main causes everyone in my life pointed to as the culprit was my diet, to my discouragement. I have always been interested and enthusiastic about healthy eating, and after eating vegetarian for a while I decided to go completely vegan. When I started having all of these problems, my friends, family, and even doctors couldn't help but try to shine the light there as the problem. This really hurt me, because I did all the research and knew about getting what I needed, nutrient wise, and so many reports of people eating my lifestyle was to the contrary, them getting more energy! I have since changed everything about my diet, introducing meat and dairy again, and it definitely did not help.
Doctors, after not being able to find anything wrong with me, indicated depression and anxiety as the problem. I had a hard time trying to argue this one with everyone, because I actually took Effexor XR during college, for social anxiety, and this was of course in back of every doctor's mind who saw me. (I never even credit Effexor with helping me that much, or at all, since it was actually my confidence and comfort with myself that really solved the intense shyness). I stopped Effexor not long after school, as I knew that I had beaten this social anxiety problem of mine. We were now into January, and my doctors could still not find an explanation despite my insisting that there was something absolutely not right with me. I felt like every single day I had gotten hit by a Mack truck. Finally, my doctor said that he thinks this is all caused by depression, and that I should go back on Effexor and see if that helps.
Well, Effexor made my life even more miserable. I kept all of my fatigue, and it all only got worse because added into the mix was constipation, major GI upset (like my body was just rejecting the medication), and I could not sleep at night and was even more tired and run down. Everyone undervalued my symptoms and the side effects I tried to describe. I gave the drug 3 months to help, and it was horrible and did not. I actually switched family doctors, and at my new one underwent all new blood work and weaned myself off Effexor. He could not find anything either, and even tested me for Lyme again . After so many visits, being embarrassed because I was complaining about things that, as far as test could prove, weren't really happening and I really felt like even the most supportive people in my life just weren't understanding how bad I really felt, I knew they couldn't understand.
This path continued, and I had many more visits and more blood tests, no results and never feeling good. It took literally everything I had in me to hike, horseback ride, or work on the farm taking care of all the horses. I was switched to other antidepressants, anti-anxiety meds, sent to a psychiatrist and psychologist, and even went up to a crazy high dose of Effexor as the result of that, which was horrible. Nothing helped me, and no one believed me that those drugs made my life worse.
My GI discomfort got so severe that I went to the ER one night. The GI squeezing, bloating, and discomfort persists pretty much 24/7, no matter what I eat or don't eat. I had X-rays, CT scans, etc. As usual, all negative, no explanation.
This path has gone on for a year and a half, and I just have no explanation to this day. I kept the symptoms and explanation of Lyme in the back of my head constantly, and decided to revisit this theory of mine today, despite the fact that my tests were negative. The varying nature of my symptoms makes me really believe it's lyme. The extreme fatigue is always there, and a pathetic list of symptoms come and go around it.
I believe it could be lyme based on the fact that my golden was diagnosed with lyme herself. I watched what it did to her, and I even had to carry all 85 pounds of her up and down our huge flight of steps many times a day. I pull at least 10 ticks a week off my dog and cats, as we life in the woods here in PA, and I'm always in the mountain or on a horse farm.
So, the bottom line, is that I have not given up on finding my solution. I have so much I am working at right now, I have to try as hard as I can just to overcome these debilitating symptoms. I come here in help, looking for a doctor in my area which is literate in lyme and the symptoms and treatment of it, one which will understand me and not just look at a lab sheet and shove a prescription for an antidepressant at me and send me packing.
As hard to believe as it us, I feel all of these:
foggy mind feels like head is in a vise anxiety attacks depression cravings aggressive behavior irritability mental dullness mental lethargy confusion excessive daydreaming hyperactivity restlessness learning disabilities poor work habits slurred speech stuttering inability to concentrate indifference cloudy or foggy thinking
swollen neck glands groin pain, horrible that is! chronically fatigued muscle weakness muscle aches and pains joint aches and pains swelling of the hands
headaches faintness dizziness feeling of fullness in the head excessive drowsiness after eating insomnia
blurring of vision darkness under eyes earache fullness in ears fluid in middle ear
increased heart rate rapid heart rate
nausea constipation severe bloating alter meals flatulence feeling of fullness in the stomach long after finishing a meal abdominal pains / cramps
I really appreciate your help. I need it.
Posts: 2 | From Pottsville, PA 17901 | Registered: Feb 2009
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bettyg
Unregistered
posted
welcome! check your profile for PENN llmds
please break up your long paragraphs above into shorter ones for us NEURO lyme folks who can NOT read or comprehend what you wrote. my guidelines are below for you to use in editing it. i have to scroll on by, sob; unable to read as is.
Welcome; i'm so glad you found us!! You've come to the right place for education and support!
Dr. Burrascano's most recent "Diagnostic Hints and 2008 Treatment Guidelines for Lyme and Other Tick Borne Illnesses" @
please see BettyG's newbie package info on the link below; click on link at bottom of my package. Check it out as time permits for you! @ http://tinyurl.com/58eyou
sorry, link takes you to END vs. beginning, so just use UP ARROW and go to the TOP for detailed info! thanks! *************** please go to my newbie links, copy the entire thing, and then print this off....FINANCIAL BURDENS compiled by melanie reber print off pages 74 - 92; outstanding info there. i believe there are a few more general comments there without links!! print that off too as it's newer info from members thru their own personal, tragic experiences.
Betty's POSTING GUIDELINES . many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``TWICE`` after each paragraph; we need that space for comprehension.
NOTE: you do NOT have to use "", just show the name of person you are responding to, and then type your comment.
IF you need to use "", PLEASE DELETE "BOLD" CODES so it's regular type text we read vs. the DARK, HARSH/PAINFUL BOLDING. delete the first 4 characters of 2ND LINE of a ""
[QB] just delete these 4 characters, and BOLDING is GONE! my eyes will really appreciate that; it's one very bad side effect of my having lyme for 38.5 years!! xox
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. ------------------------------------------------------
People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.
The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately. *******************************************
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
I sent you a private message.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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![[Frown]](frown.gif)
. After so many visits, being embarrassed because I was complaining about things that, as far as test could prove, weren't really happening and I really felt like even the most supportive people in my life just weren't understanding how bad I really felt, I knew they couldn't understand.
![[Smile]](smile.gif)
![[Wink]](wink.gif)
otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. 
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