Has ANYONE one here been helped?????

New Topic Post Reply Printable Version
39 posts in this thread.
Viewing Page :
 1  2 
[ << Previous Thread | Next Thread >> ]

stutterbug
Regular Member


Date Joined Jul 2007
Total Posts : 478
   Posted 3/13/2010 6:25 PM (GMT -6)   
Does anyone feel good?? improved???? CURED????-- I dont think so. :(

Mom to 3 kids
Regular Member


Date Joined Mar 2010
Total Posts : 37
   Posted 3/13/2010 7:02 PM (GMT -6)   
i dont at all..even more horribly ill....im suffering more than words can say...24/7 never any releif...so much pain and strange symptoms...i feel like im dying everday...doc is starting me on another antiboitc and none of them help just make me much sicker than i was in the first place...i truly feel like im dying each day..body is so ill..i have late stage neruolyme and babesi...we can talk if you need too..i ve suffered horrific migrianes all day with aura and am in misery..Cynthia

stutterbug
Regular Member


Date Joined Jul 2007
Total Posts : 478
   Posted 3/13/2010 7:04 PM (GMT -6)   
Mom to 3: How long have you been on abx for??? MAN, I am sorry that you are so sick.

momtomonsters
Regular Member


Date Joined Aug 2009
Total Posts : 89
   Posted 3/13/2010 7:46 PM (GMT -6)   
I would have to say I am much better. Most of my symptoms are gone. I am scared to stop all treatment but I do feel better. I have been left with severe osteoarthritis in my knees that will require treatment on its own. But, the fatigue is finally lifting, the crawling on my scalp sensation, numbness, pain, vision issues are all resolving. I am down to 2 antibiotics. I am feeling hopeful.
 
Momtomonsters

GWB
Veteran Member


Date Joined Jul 2005
Total Posts : 570
   Posted 3/13/2010 9:46 PM (GMT -6)   
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

rosesinjanuary
Veteran Member


Date Joined Oct 2007
Total Posts : 748
   Posted 3/13/2010 9:54 PM (GMT -6)   
What would you think is the longest anybody you know has "kept" this disease

1bitten2xshy
Veteran Member


Date Joined Jun 2007
Total Posts : 849
   Posted 3/13/2010 10:03 PM (GMT -6)   
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!
 Co-Moderator
Lyme Forum


betterhealth
Regular Member


Date Joined Mar 2010
Total Posts : 230
   Posted 3/13/2010 11:15 PM (GMT -6)   
Not there yet.... Have been sick for 10-months now and have completed 3-months of abx.
I will see a LLMD this month that I hope will put me on the right track.

Glad to read the posts above of people getting good results.

Lovelabs
Regular Member


Date Joined Jun 2009
Total Posts : 367
   Posted 3/14/2010 7:57 AM (GMT -6)   
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.

springsjean
Forum Moderator


Date Joined Mar 2009
Total Posts : 2154
   Posted 3/14/2010 8:01 AM (GMT -6)   
One year on antibiotics and was feeling a lot better. Recently though started with eye problems and now pins and needles and stabbing joint pains. So depressed this morning but I won't give in. I'm going for MRI soon and hope to once again go full steam ahead!!!!!!!!!!!! There is no other option.

stutterbug
Regular Member


Date Joined Jul 2007
Total Posts : 478
   Posted 3/14/2010 8:57 AM (GMT -6)   
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.

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35853
   Posted 3/14/2010 9:55 AM (GMT -6)   
Stutterbug,
I don't know that I can say I've been "cured", but I do feel much, much better. I believe that I not only get re-infected from time to time (I live in a wooded area & I won't stay inside!) and most likely have the post-Lyme issues to live with.

I was infected with RMSF at the age of 5 & wasn't dxed until the age of 44. I was treated with some very powerful abx at the time, but it was considered a 'mystery' illness until I was dxed at the age of 44, when I was finally tested for a handful of TBI's - by my GP!!

There is no way of knowing just how long I went without treatment for Lyme, as no one has any idea when I got infected, but I have always had something going on with my health my entire life. Now, I know what it has been all of those years.

I have been a member here for some time & have seen quite a few members come & go. I have to assume that not all of them have been healed or got significantly better, but I assume the majority of them have. The reason why anyone will find so few that have been 'healed', or have at least improved quite a bit here (or most likely on any Lyme site), is because, once you get your life back, it is hard to keep re-living (in a way) the time when you were so ill. As most anyone here can attest to - it's a hard time in a persons' life when they are dealing with TBI's.

Yeppers!! I'm still around here and frequent a few other Lyme places, because I do want to help out a bit more, and I haven't worked in so very long, that I don't have a job or a career that I had to put on hold. My hubby is disabled now, soo I'm home all of the time. I'm sure there will come a time when I will quit going to where those with Lyme are seeking help. My life will get busier, and I will find all kinds of things I couldn't do before that are suddenly available to me now. Although for now, you all are stuck with me!!! smilewinkgrin
It's been said:LD patients can be as ill as people w/ congest. heart failure & in as much pain as post-op patients.


Cre
Regular Member


Date Joined Mar 2010
Total Posts : 25
   Posted 3/14/2010 10:03 AM (GMT -6)   
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!

+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 3/14/2010 10:31 AM (GMT -6)   
rosesinjanuary,

If you'll note my signature, I believe it's obvious that I contracted a TBI in 1972. I had the bite, the tick was hugely engorged (I had very long, thick hair back then) and I got extremely sick 1 week after that tick. I know I had something for years. I do not know if it ever completely resolved, but I have suffered misc stuff w/ no explanation, since. I did go thru a long period of good health, except for bad neck and back issues and pain. I went thru a long period of high energy and strength, and healthy mind, so whatever it was either resolved or went into remission.

I was re-infected in 2007. I don't know if I'm well and now stuck w/ damages, or if I am still ill.
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
 
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.


mother natures child
Regular Member


Date Joined Oct 2009
Total Posts : 231
   Posted 3/14/2010 11:06 AM (GMT -6)   
mad no...........
 I am a Zebra


stutterbug
Regular Member


Date Joined Jul 2007
Total Posts : 478
   Posted 3/14/2010 11:58 AM (GMT -6)   
CRE::: I was just wondering if you were clinically diagnosed or you have a positive test result. Not that it really matters, I was just wondering.-- The only "proof" I have is a classic story, invovling a JRA diagnosis, the rash, and a low CD57 score done 1 year ago.--- It is hard to find people that have had this a long, long time.

+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 3/14/2010 12:00 PM (GMT -6)   
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.
 
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
 
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.


Harleyrider
Regular Member


Date Joined Sep 2008
Total Posts : 283
   Posted 3/14/2010 12:17 PM (GMT -6)   
I have to say I am still struggling with this disease and so far the ONLY thing that made me feel
normal was IV abx even if its only for a month at a time. My head was clear, my body pain was
gone, I could walk standing up straight and at a normal pace. I still had low energy and got tired
quickly but without all the fog, and pain I was able to concentrate and speak in full sentences.
I wish the doc would put me back on IV's . I guess I havent mentioned it enough with this new doc
that IV's make me feel normal. The longest I was on any IV was 90days.

Good Luck to All
 


+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 3/14/2010 12:36 PM (GMT -6)   
Harley, with what is your new doc treating you?
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
 
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.


Harleyrider
Regular Member


Date Joined Sep 2008
Total Posts : 283
   Posted 3/14/2010 12:41 PM (GMT -6)   
last 5 months have been treating with mepron and zithromax for babesia.
Had appt last week and he suggest that i finish with my 6month plan of
zithro and mepron and then I will be part of a research study for XMRV.

If this route I take next does not help then I will be begging for IV's.
 


stutterbug
Regular Member


Date Joined Jul 2007
Total Posts : 478
   Posted 3/14/2010 1:43 PM (GMT -6)   
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.

Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 3/14/2010 3:53 PM (GMT -6)   
I've been infected with Lyme for an unknown time (never had a bull's eye rash or known tick bite), but my symptoms point to the start of the infection over 30 years ago...and I have a CDC-positive test result from 2008.

I believe that there has been extensive damage done to my GI tract and the nerves that control the GI tract, as that has been the greatest source of symptoms for me for a long, long time. However, I also have cognative, joint, muscle, and other nerve issues that do affect me...I have been unable to hold a job for more than a brief time since 2000 because of very poor health from the schedule I had to keep while working, and low endurance levels.

It is likely that some of my symptoms are from damage caused by Lyme (+Bart and any other coinfections I might have) and this damage may need to be dealt with in addition to killing off the infections. My LLND is working with me on all of this stuff...he has been a Godsend to me.

While on IV Abx, the leg pains are not nearly as frequent or severe, and my brain seems to work a little better...so I know it is helping. It is just that when I stop them, everything goes back to being really bad again...so we have tried different abx and now finally Doxycycline, which has really stirred up the nausea (probably a herx...combined with Spring allergies).

Will I ever get better? I don't know...but I have to hope so, or there is no point in trying. I'm too young still to not try...
-Razzle
Chronic Lyme Disease, Chronic Bartonella (clinical dx only), Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, chronic Lymphopenia, etc.; G-Tube; Currently weaning off TPN.
Meds:  Pulmicort, IV Doxycycline, Heparin (to flush PICC line), Claritin, Singulair, Domperidone, Colloidal Silver (topically & nasally), probiotics, Liver support herbs, Ailanthus, digestive enzymes, homeopathy.


Cre
Regular Member


Date Joined Mar 2010
Total Posts : 25
   Posted 3/14/2010 4:12 PM (GMT -6)   
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.

Cre
Regular Member


Date Joined Mar 2010
Total Posts : 25
   Posted 3/14/2010 4:29 PM (GMT -6)   
I wanted to add that I seem to be one of the oddballs who continues to get Lyme rashes, years into the disease. I get several a year, typically. They are oval-ish, travel up my body, and itch like hell. I take photos of them occasionally. I have shown these photos to various docs (besides the one who diagnosed me). They don't want to "go there."
 
Anyone else experience this aspect?

+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 3/14/2010 4:56 PM (GMT -6)   
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

Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
 
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.

New Topic Post Reply Printable Version
39 posts in this thread.
Viewing Page :
 1  2 
Forum Information
Currently it is Tuesday, September 26, 2017 10:33 AM (GMT -6)
There are a total of 2,873,498 posts in 315,344 threads.
View Active Threads


Who's Online
This forum has 156841 registered members. Please welcome our newest member, LymeMomCO.
413 Guest(s), 18 Registered Member(s) are currently online.  Details
Michelejc, Froggy88, sheepla, c009j, everseeking, dacarte3, Asnape3228, cakegirl, Loutucky, UserANONYMOUS, Starlight*, owleyes, InTheShop, jmoore06, Mustard Seed, fighter87, Dirtfarmerswife, straydog


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2017 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer