Lyme Disease/Lyme??

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Brian wrote at 2008-01-03 16:39:36
Gee, this sounds just like me. Both of you. I am a 42 year old male avid hunter, fisherman etc. Although I have had borderline tests igenex did call mine positive very similar to numbers as Karl's. I beg for pain meds, I beg for pick line, currently I am only taking ceftin 1000 mg 2x's daily, was taking perc 7.5/325 three times a day for pain. Doc went on vacation and basically told me to suck it up. I also had the babesiosis. Sweats and shakes, yuk. zithomax and mepron seemed to work on that. The doc was not real sure that I had it but I did have a positive titer so why not, hell, I would have tried anything. Currently I am seeing Dr. Gaito, see is great but unfortunately three hours one way. North New Jersey, she is a strong advocate looking out for patients like us. Google her name she is all over the web and currently the only person in my corner.

I like Karl have been to the "Neuros" who seem to be out of there league. The Infectious Disease guys who tell you it is not infectious. There are  many doctors in denial, a very sad state of affairs, keep searching, keep praying, and have faith. This can be very depressing, until now I have avoided the Shrink. no more, I will be going tonight at 4pm.

My loving wife has put up with this for three years. There are time when she doesn't belive me I know, but she comes around. The feeling that there is something physically wrong with me is too strong to be a mental issue. Last fall I went to bed thinking something is not quite right. At three pm my heart bounced hard in my chest, I felt sick and nauseous, I went to the ER, three hours later and much to my surprise, I was released. I went directly to my doctor who admitted me to the same hospital where I was released from earlier. By the time I got there I was have severe chest, neck and jaw pains. I was having my first bout of peri/myo carditis. A result of the Lyme bug.

So I say to you all, you are your best advocate, you know something is wrong, keep it up, the prayer the phone calls to doctors and most of all be a pain in the butt. It is the only way you will get better.

I will now also be trying the hypoglycemic route. I think the ph of your body needs to be around 8 or so. Several companies sell strips that measure this. you just stick them on your tongue.

The pain meds scare me a little but is is the only way I feel "Normal." Very odd for me, they used to knock me out, now they clear me head and wake me up.

Keep up the fight, it is your health and quite a battle. God Bless and achieve good health.


Jamie wrote at 2011-01-01 00:43:14
Hello All Interested in Lyme Disease: I was reading some of the other posts & wanted to add to it since I know how frustrating it can be to be told, "Its all in your head!" Let me start by telling a little about my journey with this disease. In early 2006 I moved from UT to FL and led a normal life that a 24 yr. old mother of 3 would live. About 6 months after my move, I started having constant infections of the ears, nose, throat, sinuses, etc. Which was not typical for me. I've always been pretty healthy & active except I've always sufferd from migraines & headaches since the age of 7. So I constantly went to the dr. Seeking advice on what to do for these chronic infections. Seems like I was always on antibiotics for one thing or another. About 8 months after my move & a few months of these chronic infections I became very sick. I had a flu like illness with sweats & chills & horrible headaches but no matter what, the fever wouldn't break. I was always tired & couldn't stay awake for very long. I was sleeping up to 18 hrs. A day and couldn't stay awake no matter what. My memory seemed to be horrible where before I had a photographic memory. I couldn't even remember the rest of my sentence sometimes. My heart was beating rapidly & irregularly so bad to where I went to the ER thinking I was having heart attacks. I also was very weak & couldn't lift even grocery bags. My whole body was just weak, tired, sickly feeling all the time. I was diagnosed with fibromyalgia & rhematoid arthritis. Also, the time I had the horrible fever thst wouldn't break...it finally broke by causing my whole mouth & throat to break out with sores everywhere. This went on for a year and a half until I moved back to UT & found a dr. Here to find out what was really going on with me. Luckily for me, his wife & daughter both had Lyme disease & it prompted him to do an ELISA test on me, which 2 of 3 bands came back positive. After further testing & months of antibiotics, he concluded I had Chronic Lyme Disease. Chronic because it had gone untreated for almost 2 yrs. Until I was properly diagnosed. My CD57 test came back showing my immune system was the same as an AIDS patient. I was taking zithromax, doxycyline, & omnicef for a year with little improvement. After a year with no results on oral antibiotics, my dr. Chose to have me on a picc line with rocephin injections. I did the picc line thing for about a month, because after having pain in my arm that would not go away, I was diagnosed with a DVT (blood clot) in my arm where the line was put in. Of course you can imagine my fear...being 27 yrs. Old with 3 kids and a life threatening DVT. I continued on oral antibiotics after the picc line had to be removed. It seems like my fatigue improved for a bit & my CD57 was a little higher, meaning my immune system was getting stronger. So now it's been almost 3 yrs. Since I was diagnosed with Lyme & about 5 yrs. Since my first symptoms manifested themselves. I am now starting to have the same, recurring infections, depression, muscle twitching, etc. That I had before. It's very discouraging since trying to find a new dr. Has no knowledge of this disease & some have flat out told me it doesn't exist. I can tell you the symptoms I've had from this disease are no joke. Muscle twitching, fatigue, night sweats, infections, spitting blood, muscle pain & weakness, etc. Are just some of them. I am so fatigued again lately to the point I fall asleep anywhere, anytime. I feel so bad that drs. Just don't understand enough about the disease to diagnose & treat it, because if it's diagnosed & treated early you have such a better chance of beating it. When it's not treated promptly, you have low chances of ever recovering from it. There is a movie called UNDER OUR SKIN which shows the vast differences of symptoms between patients. Some cannot even walk anymore. The actress joanna kerns has a daughter who is completely bedridden from Lyme. I suggest you go to the website & view the trailer for the movie UNDER OUR SKIN & you will learn so much in just a few minutes of watching it. From the emotional, physical, & mental effects it can take on you. I hope my comment helps & feel free to ask anything else you wanna know. Thanks for listening...and sharing.


Pip wrote at 2012-04-06 07:36:29
Hi Carol, I have agoraphobia, bad joints, depression and have been tested for everything,I think I have Lyme disease.  


cat wrote at 2013-09-16 15:20:27
I have just read all this. Your sysptoms could also be from a thyroid condition. It could also be from a neck or spine issue.  


Lyme Disease

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Carol

Expertise

I can answer questions about Lyme disease and recommend websites where one can find good, up-to-date information. I can also tell you how to find a Lyme specialist which is critical if you or anyone you know suspects that he or she may have Lyme disease. I can, also, provide you with a symptoms list.

Experience

I suffered for 2 years with a bad case of neurological Lyme disease & finished a 37-month course of antibiotics in March, 2007. I went undiagnosed for 2 years, & saw a total of 14 various doctors and 'ologists. I attended a two-day Lyme conference in the spring of 2005 and I keep myself current on the topic of Lyme disease. I quickly learned that YOU CAN HAVE A FLAMING CASE OF LYME DISEASE AND STILL HAVE NEGATIVE TEST RESULTS! It is essential for anyone who suspects that he/she may have Lyme disease to be tested for the co-infections that can occur with it. Only a Lyme specialist can perform these tests and make these diagnoses.

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