HI All, I have been reading from this site for some time and finally had the "engergy" to join. I want to share my story of the past 3 years with everyone.
One morning in late October 2007 I woke up w/ a terrible feeling. For the prior two weeks I wasn't myself. I would space out occasionally or not feel well. I just figured I'd get over whatever was nagging here and there. Well - I didn't - after about 2 weeks of mild odd symptoms out of the blue I woke up and couldn't set up straight. I had an awful feeling that I was dying. From then I struggled so much.
I had a 6 years child and was a single parent w/ no close support of any kind from family. I spent the next 2 months in and out of ther ER to be told that nothing was wrong w/ me. In January of 2008 I moved from my north Texas home to live w/ family in Alabama. While family helped w/ my daughter they also drove me from one Dr to another specialist from 01/08-08/08. I probably saw 50 different Doctors w/ no significant findings. I had hundreds of tubs of blood taken, mri, sleep study, cat scan ETC ETC. Nothing.
At 08/08 I stopped seeing Dr after Dr.. I just figured I'd live and the Drs had almost convinced me that it was me who was just crazy and everything was in my head. In late October of 2009 I was having my annual well visit and just happened to "drill" my gyno for his opinion. See - There was one symptom that came and still is present that deals w/ my uterus. The month that I became deathly ill in October of 2007 my periods changed from normal discharge to simply large mucous clots. Since then it has been the same and still is, but none the less it was a "visual" symptom.
By 10/09 I have resolved that I'd live in miserable pain and there was not anything to be done other than wait to see if it went away. Anyway - I said "what the heck" - So Gyno, Dr. C in Denton, "as he was heading for the door"- What could cause this immediate change in my periods? ...and he finally (after I asked the question a few times) said "possibly and underlying infection". - What do you mean - I've been tested for "everything" - No bugs grow from my blood draws and I've told my internist that I feel that I have a bug because I can tell that some of the antibiotics seem to make me worse/better. (You know - the antibiotics I took for all the other symptoms I had - UTI, ear infection etc. caused by the Lyme and co-infections ). He really didn't want to get into an involved conversation but recommended that I see Dr. W in Denton (former Gyno).
I went to see him and Labcor blood draws that he requested showed RMSF (Rocky Mountain) and CDC positive for Lyme. As of 11/2009 I started abx treatment. From 11/09 - 05/10 I was on high dose doxy, cefin, and cipro. From 5/10-9/10 I was on clarithromycin, augmentin and plaquenil. As on 7/10 Dr W "retired". I found a Russian Dr in Dallas to continue my treatment locally. In addition to antibiotics I have been on Rhodiola (which by the way worked good for my nerve involvement), Alpha Lipoic Acid for nerve involvement, basic vitamins w/ extra B, C, Mag, Cal, and Zine. I've also tried adrenal rebulder which seemed good for adrenal fatigue. In addition I've been on or am currently taking Nystantin (pills/liquid) and amitriptyline.
I AM IN MONTH 14 OF ABX TREATMENT AND HAVE IMPROVED. I AM NOT WEL, BUT i AM BETTER. The Dr. that I go to does not specialize in Lyme but he plans to treat me w/ abx treatment, alternating every 3-5 months as I plateau. I went two years VERY ill w/ no treatment and have spent the last year on treatment getting somewhat better VERY VERY slowly. 3 years now of what seems like a big "fog" For most of the first 2 years I slept 16-18 hours a day. Now, I'm sleeing 12 hours a day and don't seem to function well at all if I get less than that. I KNOW THAT I AM BETTER - JUST NOT WELL -
I HAVE TWO SYMPTOMS THAT ARE WEIGHING HEAVY ON ME -
1) I believe that my uterus needs attention. I'm not sure what exactly is going on, but I think that the Lyme or some co-infection may be "hiding" in my uterus and the meds are not taking care of that area. (That is just a thought - I really have no idea - i just think that there is an issue there that should be addressed and no doctors have benn able to offer any suggestions for it. ) The discharge is just too weird and has been exactly the same since I first became sick. It is mucous like and clots. It "feel" that if I could find a way to make an impact on this discharge that I might make a good stride in helping my process along.
2) My neck pain. I can wake up in the morning and the neck is tolerable now but as the day goes on my neck becomes very sore and painful. If I lay down for a couple of hours it gets better. Does anyone know of things to do to relieve neck soreness of this type? -
I am so thankful to be feeling significantly better than I did 14 months ago, but at this time, it feels like at any moment I could relapse and start feeling as awful as I have in the past. I start feeling it coming on and sometimes it does and I have to lay down other times it just feels like I'm constantly on the edge of slipping back into a state where I can't get out of bed. -
In terms of how I think I became infected. I believe that I pulled off a tick at the base of my head in the back near the hairline when I was washing my hair. At the time it hurt like heck when I was washing my hair but I just disregarded it as some acne or something and kept moving along quickly as I was in a hurry. I never saw nor knew for sure that there was a tick bite and there was no rash, but as I look back....about that time is when I started feeling sick. I believe I picked up the tick near a lake in North Texas while walking some trails.
I am absolutely amazed at the pain and suffering, that I realized first hand, of these awful TB diseases. I have only found a few Drs that will even acknowledge that what I've experienced is possible. With all the technology that we have I am amazed how someone could suffer to this degree and be told that it is in their head. Absolutely amazed.
And then the family/friend issues - Even family and friends have a very very difficult time acknowledging it. Really - If they doctors don't acknowledge it -- it is easy to understand how that family and friends would disregard the suffering and/or just not be able to fathom. To them I believe I'm just some crazy lady in her 30s.
Ya know - I knew a couple of ladies that "acted" like me. That is, before I became sick w/ Lyme I knew two ladies on my street that were just like I am now. One was an elderly lady who has passed on. No know reaon for her death other than old age and she really didn't seem that old to me. They say she had a gall bladder infection but there was nothing else wrong w/ her that would have caused her death. I used to visit w/ her frequently. She felt very ill all the time from one thing or another and saw dr after dr will no answers.
In addition, about 8 years ago there was another lady in her 30s like me. She had a 5 year old daughter at the time. She was an executive like myself raising her daughter on her own. Just like me, over night she became deathly sick and was stuck in the bed. She found a friend to live w/ her and help take care of her and her daughter. I lived a few doors down and watched this lady loose weight and do nothing but complain of one odd problem after another. She went from Dr to Dr and then finally one day she was gone and I asked neighbors what happened. "She moved" to some state to live w/ family. A couple of years later I'm thnking I'm repeating what she was going through.
I know that there are other diseases that are very devastating. You hear of things like some outbreak of some disease long ago or in other counties and the words gets around and everyone hears the word and takes it seriously...but Tick Borne illnesses - a issue in The US today - Really - How many people are scared that they will get a TB illness and suffered the type of misery it can cause? Crazy - We as a society are so smart to be this ignorant about something of this magnitude.