VERY CONFUSED WITH SYMPTOMS AND POSSIBLE LYMES

[Lucy's Daughter]

I have been sick since April 2002 when I rolled over in bed and the whole room "went with me" (extreme vertigo) and then my eyes started "acting up" somewhat. Then I began with severe stomach problems which ended up with me having my gallbladder removed in 2003 - by then I had quit work. I was having severe head pressure, vision problems and major balance problems. Then in 2004 I began with tingling in my right thigh and feet and burning sensations all over and now I twitch almost everywhere and the head pressure continues to be severe as well as the balance issues and the vision is terrible - floaters, flashes of light, vision dimming, pain behind my eyes. The balance gets so bad at times I feel as if I cannot stand up.
I was recently tested for Lymes Disease (for the fourth time).  This time the test was done through IgeneX and it showed three bands which were not positive or negative, but interminate???
The doctor wants to begin treatment of Zithromax (pill form) and Mepron (liquid form) for possible babsia which can go along with Lymes Disease which I don't even know if I have or not??  I am VERY CONFUSED.
I have had numerous MRIs done along with an MRA and an EMG and nerve conduction test and visual evoked response and lots of blood work over the years.
I am seeing an infectious disease doctor who does extensive work with Lymes patients. I have only seen him twice so far, but I don't know what to think oir what to do.  Some days the symptoms are so bad, I just want to "give up", but that's NOT an option.
Any advice would be greatly appreciated.

[jddaulton]

I too am concerned that I may have Lyme Disease, my symptons are numerous and the majority of them fit the Lyme Disease profile, except I did not develop the classic rash that I know of.  The tick bit me in the middle of my back in July of 2008.  Initial blood test 2 weeks ago came back "equivacable".  Though CDC and standard medical protocol dictates that any patient with an equivacable or positive test result be further tested via the Western Blot, I simply received a call my doctor's nurse telling me my test was negative and all was well.  Needless to say I am have the Western Blot performed which is the final "tell-all test" for Lyme Disease.

As a second note, I had gone to the emergency room twice in 1 week and 3 times in 4 weeks for the Lyme symptons and others.  Of importance was I was diagnosed with Hypokalemia.  This is when your Potassium level is too low.  It sounds minor, but potassium is required to maintain all muscle functions, inlcuding the lungs and heart.  I was immediately put on Potassium Chloride for 30 days.  Within 3 days, my migraines, heart palpatations, anxiety attacks and muscle pain and weekness had improved tremendously.  And, as long as I coninue on the Potassium, I'm able to function.  I had no idea the seriousness of our Potassium level.  After doing much research, I learned that had I waited much longer before going to the ER and this blood serum test being performed, I would have ultimately needed intrvenious potassium intake or would have died in short order.  The biggest cause of Hypokalemia is diuretics.  However, I do not take any so thus, new studies are going to started to determine the cause of the Hypokalemia, as it is serious.

Hope this helps some one and good luck.

jan1965

[LisaNSlo]

Well having read all of these comments, I am wondering if I have lyme.  Fatigue, confused, feeling of unrealness, muscle spasms, and now they have gone to that "inner nagging tremor," and that is what is freaking me out.  I cant sleep, I ache everywhere and can barely stand at times.  I have been searching for the last month for some possible reason I feel so bad.....and I do take tic's off of my dogs often.  They are everywhere at times and so this could be something....feeling this way is scarey.  I dont feel alone....this isnt in my head.

[floxie]

Have you taken any antibiotics ex: levaquin, cipro, tequin, avelox????? It sounds like you have been poisoned by one of the fluoroquinolones.
Dr.s don't seem to be able to read and see what the side effects are. Let us know...

[hbeachgrl]

YOU NEED TO READ THE "SYMPTOMS" SECTION OF THIS WEBSITE!!!!!!!!!
http://www.fluoroquinolones.org/REV10-Symptoms.htm

I hope it helps you, it did for me.

[theteenietop]

I was checking on Lucy's daughter to see if she posted again and I read your post under my response to her.

After my crazy 3 years of doctors I should not be the one dispersing info but again I feel I have to pass along what I have learned.

I got tested for babesiosis from Quest (local insurance backed lab) when I was getting tested for lyme by a lyme literate doctor.
Babesiosis (not sure of the correct spelling) is a parasite you can pick up from the bite of a tick.

I was positive and I had  muscle twitching and vertigo  or what I like to call elevator legs, feeling like I just stepped off an elevator after a long jerky ride.

I know shortness of breath is a very common symptom though it wasn't for me. I also know most primary and some infectious disease doctors will not even check you for it.

I am not suggesting you have this as it could be a lot of other things but if you had any time you were exposed to even a possible tick bite you might want to check it out. God Bless

[iltps]

about 6 years ago i also woke up with extreme vertigo and ever since then nothing has been right. the vertigo settled down after a day, but i've had all sorts of symptoms, the most annoying/scary of which is continuous shortness of breath (over the last year and a half). the doctor won't scan me because he says it's anxiety, after i had x-ray of my chest/lungs done which were clear. if you ever find out what you had let me know, but your symptoms seem similar to mine. i also have strange twitching, some balance issues, among many other things, although it doesn't seem as debilitating as yours. i'm a 22 year old male.

[theteenietop]

I felt compelled to leave you a comment after reading your post.
I had no intention of registering but I wanted you to know you are not alone.  I also had very similar symptoms as you that started 3 years ago.
I also was told it was probably lyme disease. I live in a very high risk area (dogs have lyme, deer in the yard daily). I have been treated with antibiotics for 3 years.
over the last 2 I slowly got better but had a nagging inner tremor that would not go away. One of my worst symptoms.

I added bio-identical hormones to my mix and finally felt normal again.
I have only gotten a postive lyme test thru IGENEX and though it was CDC positive (very positive) I always wondered if it was truly lyme but I was getting better so.......

Tonight I got on the computer to research menopause because around the time I started to get sick was the big hormone scare.
I started to decrease my hormone pills and eventually got off them completely. I would mention this to all the many doctors I saw while trying to find out what was wrong with me and all the doctors felt that these crazy symptoms could not be related to menopause.

Well after reading up on it tonight, it turns out a lot of the symptoms could be caused by menopause. bugs crawling under your skin, inner tremors, pounding heart, sleep problems, dizziness.

I still don't know what I had for sure and I thank God I am 95% better. I don't know what age you are but if you are approaching menopause at least read up on the symptoms it is really surprising how many are similar to lyme symptoms.