Has ANYONE one here been helped?????

Does anyone feel good?? improved???? CURED????-- I dont think so. :(

Mom to 3: How long have you been on abx for??? MAN, I am sorry that you are so sick.

stutterbug said...
Does anyone feel good?? improved???? CURED????-- I dont think so. :(

Cured? No. Better? Much!! Read my thread below and feel free to ask me any questions about my treatments or anything else.

www.healingwell.com/community/default.aspx?f=30&m=1690780&p=1

Praying things get better for you!

Gary

After 3+ years of treatment, and final treatment (still ongoing) for virals...I am at 90% - 95%.

Yes there is hope, yes you can get well!

16 months til I got treatment, 16 months of abx. Some symptoms are totally gone. Others not so much. Have some crappy days still. But some good ones, too. LONG road. I had no idea it would be this hard. Trying to stay hopeful. Hard sometimes. Thank god for my doc. Don't know where I'd be without him. I don't even want to think about it.

ROSES IN JANUARY: I guess I am the only person I know who has "kept" LD for a very, very long time---- 29 years. Short stints of aabx...thinking I was herxing, but was just really reacting to overdose of the abx, and I tok lots of supplements.-- The damage is done for me. I have had it too long and am no longer seeking, which I cant find anyway, IV abx.--ALL the abx in the world are not gong to improve damaged joints and organs.

I feel a bit like Stutterbug. I have had Lyme, apparently, for at least 20 years or more. I kept being misdiagnosed (CFS, fibro, etc). It is obvious that it is now in my brain and CNS, and my joints are ruined, especially my knees. I have never really been treated with antibiotics. When I was finally diagnosed (2005), I was handed a two-week prescription for doxycycline and told that I would need to travel far and wide to find a competent LLMD. I then started doing my own research on all possible treatments, while contining to work fulltime in the fields of IC, CFS, fibromyalgia. My work was extremely stressful and very anti-Lyme (go figure). I did try several natural therapies during this time, including samento, but the herxing (I assume) was so severe, especially affecting my mind/cognitive skills, and at the time I was still working fulltime -- there was no way I would have been able to continue to work (a necessity) and to treat it, especially with IV antibiotics, which, like Stutterbug, I have not even been able to find in my area.

It is really a mess for me, a nightmare, if you will. I am not sure where to turn or that there really IS anything, at this point, that would help me. And I cannot risk getting ANY worse through treatment(s). Top that off with not being believed regarding having Lyme, being forced to quit my job because of a new bullying boss who hates sick people (huh???), and major denial of Lyme in the medical community around here, and you can see the complexity of this problem in my life. I am still searching for the right answers for myself. This is not easy at all. I try to go with my gut instincts. They are usually right on target. There is something about longterm IV antibiotic therapy FOR ME that does not sit well, like it is not going to help, is going to make me go broke, and/or is going to cause even more major health problems/make me even sicker indefinitely. All very frightening!

 no...........

And ps: Cre, I get really scared about the possibility of ending up in a situation like yours.  I'm very sorry.  It's a tragedy. How in the world are you managing -- not being able to work, etc? I am 100% self supporting -- I've gotta work if I've gotta crawl and cry thru it! Heavens. God bless you and we must pray for help for you!

I, too, made the decision that I would not succumb to IVs. I was not opposed to long term abx, I just ran out and couldn't get another refill. I would probably not have continued for more than a year tho.

I believe in abx, but that it's difficult to find the right abx, just as it is difficult to find the right treatment for many other things.

 

Harley, with what is your new doc treating you?

HARLEYRIDER: so you feel pretty good on the IV abx, but when they stop yoo go back to feeling Bad??? I have heard this a lot.

Some more info on me to address your questions: I was a bit of a sickly child ("kidney" issues, bad allergies, etc), got better. Started getting mysterious and debilitating/itchy rashes in high school (even hospitalized once for them), followed by IBS, more allergies than when I was younger, severe tachycardia, panic attacks, brain fog, etc. I still managed to study and teach classical ballet for several years and graduated magna cum laude from college, but I never felt right. I guess you could call what I was feeling back then "fibromyalgia," but since I was having severe panic attacks at the time (beause I felt so PHYSICALLY ill), and my bloodwork was always fine, I was treated with cognitive behavioral therapy!

Then at about age 28, I got interstitital cystitis (IC), which ruined many, many aspects of my life (if you know about IC then you know what I mean). But I still did not let all of this get me down. I got involved with the IC community, ended up getting a great job in the field, and continued to work at that position until just last summmer (2009). I would probably still be working there in some capacity, but a new executive director came on board and she, being perfectly healthy, had a huge dislike for sick people (and for those who had been at the nonprofit the longest). I was basically forced to resign. Because of the extra stress that she was creating for me, I literally became sicker and sicker with the passing of each day that I still worked there. It broke my heart to quit (those people were like my own family), but I had to get out. The mindgames were endless. It was surreal. She knew exactly what she was doing.

I guess you could say that I was very, very lucky in that I was able to work from my home office for the same nonprofit for over 15 years -- and I worked my way to the top. During that time I had lots of other chronic illness issues arise (even shingles twice), but I always managed to just work right through them. It was expected of me. I was helping sick people. That was my job. No time for me to be sick. But this time around, with the new ED, I was not permitted to work through them. She wanted me (and others) O-U-T. Pretty ironic isn't it? I mean, I was working for a nonprofit that was supposed to care about people with IC, fibro, cfs, etc. What a joke. I was the one person on staff who never missed a conference call, rarely if ever took a sick day, never even took a week's vacation -- anyway, the whole ordeal took a lot out of me, damaged my health even further, and has left a really, really bad taste in my mouth and chip on my shoulder. This experience also made me a strong advocate against workplace bullying, especially for those who are chronically ill.

I was diagnosed clinically with Lyme (my doctor at the time actually has Lyme -- and still does) and also tested positive on the Igenex test (IgM positive) in 2005. I will be 47 next week. The doctor who diagnosed me felt that I had had Lyme for many, many years. That would explain why I was so sick for so many years. I am currently on unemployment and trying to figure out what to do next. It isn't easy, as I said. I am caught between a rock and a hard place. Oh, and I pay my husband (we are separated but remain friends) so that I can be on his medical insurance since I lost mine when I was forced to resign last summer.

I hope that I remembered all of your questions. If not, or if you have more, please ask away. This forum really helps me because I have had to remain silent for so many years about all of this (because of my work). I could lurk but never tell my story. I am determined to change that!

Thanks for your interest and kind words.

Oh dear, Cre, what a tragedy! And the irony in uncanny.  Did you ever document anything at your workplace?  You know, bullying or creating hostile environments these days is soooooo illegal. Even if you don't have enough documentation for a lawsuit, surely you have enough to get that ex-boss in trouble?

I have taken a lot of crap from crappy (substitute the 's' word, please) at various places I've worked. I always prided myself that I never let it interfere w/ my own good attitude and professionalism. HOWEVER, if someone even starts jacking w/ my job and my livlihood, I am up for the fight. And I have had some fights.

What you were up against is sooooo illegal, but worse, it is so insidious and downright evil.  I understand that there are plenty of evil people out there in the work place. Let them all go on and be evil and dig their own graves. But once they start jacking w/ a person's living, they need to be attacked.

Cre, it is strange, because we have some similarities.  Right at the same time as my lay off in 2007, I got the tick bite. This was the mortgage biz and I was fighting like crazy to get a job.  During the first month, the only offer I got, came after I practically begged on my hands and knees w/ a woman who was interested in hiring me, but seriously doubted I could handle the stress. Little did I know that she was being brutally honest about the stress (WHY must it be this way??)

I took the job because I HAD to. I had been a good processor (and it's normally pretty stressful, but I handled it OK). I started it appx 1 month after my tick bite and mild illness.  I suffered difficulties in training -- I couldn't keep up w/ the computer training, w/ a program I had used before. I couldn't think straight, couldn't remember anything. I was so embarrassed.

Then when I was assigned to a team, the real nightmare began -- just as you said.  It wasn't just that my team leader was a complete and total B, who insulted me (underhandedly) at every opportunity.  I could not keep up, I couldn't remember things, and I was stressing so bad I was literally sick. First I thought it was just me, but I learned that many others were suffering from the stress also. Difference was, it was making me so sick I was (not seriously) contemplating suicide, just to escape.  I had to take a xanax to go to work and needed another half way thru the day.

1)  No one should have to endure insult and such high degrees of stress at their job (unless it's paying a heck of a lot more than 35 grand, anyway)

2) I now realize that I was very sick at that time. I had cognitive problems and severe anxiety issues, probably from Babesia.  I probably could have endured had I not been sick.

The good news is that I was able to convince the State to pay me unemployment on the grounds that the position was physically too stressful for me. My quack psyche even wrote a letter for me -- he didn't believe in Lyme, but he believed that I could not handle that job and the stress.

Cre, I am not happy to hear about the place you are in now because I know how bad it sucks and because it was a nightmare finding another job. I almost killed myself about 50 times! 

So, Cre, I am here w/ you and I'm pulling for you.  You ARE definitely between a rock and hard place. I am definitely praying for you!

btw, I am currently working in a 'hostile' workplace. I work very closely w/ 3 women who are total B's, they all have their own mental disorders and  they hate me. They make mistakes, but are trying to hang me w/ my many mistakes.   Suffice to say, I never made a complaint to my boss --- SHE initially brought this up w/ me, having heard the way they treated me.  HR finally called a meeting w/ all of us, still, thru no complaint of mine -- based soley on what my boss was hearing coming from them.

And btw, the lady whose position I obtained, was fired for shoving one of these women. She was evidently working on documentation for a hostile workplace, but one evening, during court, could not contain herself and she shoved one of them. Fired the next day.

Needless to say, there had been meetings w/ HR called regarding the treatment from these women, but she was not able to hold out.  I will, by God.  They will NOT make me quit this time. I will have their 'A's' knowing that they have done this before.

So, Cre, if there is any way in heck to document anything, you should try. You had the right position for you. No one has the legal right to take that from you and ruin your life.

Sorry so long -- I just love it when some of us relate....

It is temporarily better and I am satisfied that