posted
After 10 months of abx, I feel the worse I've ever felt on Mepron (Babesia abx).
Somehow, the first week on most drugs (mepron too) is great, then it's soooooooo downhill. I feel like rubbish!
I am so upset about my lack of improvement, I feel like giving up. I was much better when I went into the Lyme dr's office with a cane. Now, I can barely use a walker!
I even suspect I have Bartonella since taking Levaquin a year ago (as per Dr B). I had to stop when my stomach hurt a lot from the medicine. I actually felt better during this first week too.
I didn't have Bart streaks though. I do have the bumps. All I know for sure is that I walked during the first week of levaquin.
Thanks for being here to listen to my whimper. I just feel so hopeless- like I'm losing this fight.
Has anyone else felt better for such a short time (first week) on meds and then yuck. Or is this just lucky me??
-------------------- Be well, SAK Posts: 371 | From Up North | Registered: May 2005
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Sak, do not loose hope..Call the dr and ask about alternative meds/different abx or taking a break.
I also think that Bart is a big player with my daughter not being well..However she is her own worst enemy with poor attitude and non-compliance..But she has never been able to tolerate the killer doses needed to eradicate the bugs.
And another thought, are you doing anything to detox? Lemon and water, chlorella, CSM, etc..It is essential..So many of those that have the diseases do not eliminate toxins adequately.
Good luck and hang in there..
Posts: 2360 | From SE PA | Registered: Mar 2004
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Carol B
Unregistered
posted
SAK- I like your kitty kat with the butterfly wings ! I am only in my third month of treatment, and I have to admit I am a bit concerned about the treatment road ahead.
I have been let go from work on disability- with the idea that i was to use the summer to get "all better' and return to work-as a teacher - in mid August.
I feel as naive as my employer about the course of treatment. Sure wish I knew how I was going to respond. At this point I am feeling better, but realize I must prepare myself for a setback which I guess is not really a setback, but an indication that the meds are valiantly carrying on with their seek and destroy mission.
When I get down like you have, I always post so that other people can remind me it does get better. 11 months seems like a long time right now while you are in the thick of it, but in the whole scheme of your life it may just be a blip on the radar.
Just for today. Just for today-keep putting one foot in front of the other, or one prayer in front of another, and before you know it, when you least expect it-the sun will be shining again, and you will know JOY. That's what I am hoping for.
Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Just wanted to let you know you're in my thoughts.
I started treatment in June 2005. In December, I really took a nosedive with treatment -- in fact I had one of the most horrible holidays on record. I also had a number of new symptoms surface, and that bothered me a lot.
I discussed all this at my next LLMD appointment, and I was told I have Bart in addition to Lyme. After two months of rifampin, most of those new symptoms disappeared completely.
Now at a year of treatment, I'm feeling pretty darn good. Not 100% but pretty good. I do remember reading posts here where people didn't make any progress until they'd been in treatment for at least a year, sometimes more.
I think it's just best to think positively. I keep a daily record of my symptoms (www.lymepa.org has an excellent symptom chart). That helps me really track things month or month, as well as day to day.
Anyway, I mostly just wanted to let you know I'm cheering you on. You take care and hang in there and keep us all posted.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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posted
Yes..do hang in there..I too have felt awful with verious abx,but the bad times,the killing-off times,the herxing..unfortunately are all apart of this trail back to better health. Try not to be too down,but when you do..have a good cry,wash your face with nice cool water,step outside and think of the positive things in your life..even the most basic of things...the beauty of a sunrise and the warm smile of a friend.
I DO know this place you are in...I have been there many times on the lyme train..my tickets and destinations have been from doxycyclene to ciprofloxacin with various ugly stops inbetween.It's a lousy painful ride on the lyme train...my own journey has been going on for 6 years and as you know,some travelers have been on this ride for many many years. The bad times WILL lessen up and the easier times will eventually last longer...Identifying exactly what bugs you have(ie,co-infections) and which antibiotic,supplements,etc work for you will take time. But please believe me,with a good lyme-dr.you will improve in time. Remember that detoxing is very important.My own lyme dr. believes that 50% of treament is the meds and the other 50% is detoxing. Once you start killing off the little devils,you must clear them out.My detox routine involves daily infra-red saunas (5 min)followed by cool shower with loofa brushing entire body. I also take chlorella in graduated doses..getting up to 30 per day.. lots of water and a proper diet of course...but ATTITUDE is so important. At the end of 2003,I was considering taking a jump off the G.G. bridge. But since then,Ive gotten a grip on it..I do see a psychiatrist once a month and have been on an anti-depressent for the past 2 years..It has helped greatly. Sooo hang in there,use this forum often and try to understand that you WILL get better. Write to me anytime. Good thoughts you way, Bartonella Blues.
Posts: 42 | From northern calif. | Registered: Mar 2006
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posted
Thank you all so much. It means a lot to have some others who know about this battle to share with.
I'm trying to focus on my few abilities that are left to stay positive. I'm wetting my feet in epsom salts, drinking lemon/water, and started taking chlorella.
I hope something helps, if only a little. I'll take what I can get. I have Babesia for sure.
Mepron is giving me the worst herx ever. I suspect Bartonella too but can't prove it.
I appreciate your help and good thoughts. They help!
-------------------- Be well, SAK Posts: 371 | From Up North | Registered: May 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hi SAK
I have had breif periods of time where I would feel better untill the herx's hit. It may be the herx's that are whamming you back into the ground.
I got much worse before I got better.
Unfortunately,this is not unusual for alot of people I have heard from.
I know 10 months seem like an eternity but if you have been sick for a while it may take a long time to feel better again.
It took me two years of herxing like a dog(on and off) to feel better. There where many ups and downs. Many. So you are intitled to cry, whine, scream moan. This is a very hard beast to beat. But over time you will beat it!
Since you felt better after your bart treament for a while maybe to have another go at that? This could be holding you back.
The tests for bart are unreliable. I tested neg too but have all the symptoms except the streaks. The streaks, like the "classic bull's eye lyme rash"- not everyone gets the bart streaks.
The babs treatment was the hardest part for me. Durning my treatments I got worse and was also discouraged. But over time I did get better and the herx's where less.
Are you detoxing? This seems to help me clear a herx faster.
detox teas detox foot pads warm epson baths drinking tons of water
These are the top 4 things I do that seem to help me the most.
I hope you can feel better soon. I know its a long road to wellness .
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
SAK,
Are you treating your symptoms as well as the Lyme? I don't know why you have difficulty walking, but trying to treat that seperately may help you improve faster.
I had severe muscle and tendon pain when I started treatment. Treating the pain is one of the reasons I believe I improved in Lyme treatment.
Pain stresses the immune system. It's harder to get better if you are in pain.
Also, by treating the pain, I was eventually able to do yoga. I really think that exercise is important, once you can get there. I realize it's not always possible. I was there once. I first found the meds that helped, then worked with a phsyical therapist to relax my muscles and then strengthen them.
I stopped using my hands before diagnosis because I was told I had tendinitis. I ended up in a much worse spot because of muscle atrophy.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
Lots of people on my support group from Cali have been sick for twenty years or more and just realized they had lyme and co-infections.
So, they are a mess and most of us haven't been in treatment that long, maybe one to two years.
What seems to generally have helped alot of the group is Rampifin(?sp) for bartonella and not so much Cipro or Levaquin.
Also most of us also have mold issues and problems detoxing neurotoxins. So CSM has helped alot of people get rid of the neurotoxins so they don't build up from the lyme, mold and babesia. If you are feeling worse this could be one of your problems for sure.
Also most of us are on chlorella for heavy metals and detoxing. Starting with 4 and building up to 30 at noon everday.
Posts: 293 | From healdsburg, ca , sonoma | Registered: Feb 2005
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posted
Thanks again for your support and suggestions.
I have no pain, just symptoms. I wish there was something I could take that would help my balance and walking!
For sure I'm sensitive to mold. Makes me a lot worse! We had sewer blockage in the basement which made it worse. Cleaning it up now.
I'm taking chlorella but not 30, just 6/day.
What's CSM? I did a search but nothing came up about it.
I appreciate sooo much. I'm trying everything suggested and praying lots.
-------------------- Be well, SAK Posts: 371 | From Up North | Registered: May 2005
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bettyg
Unregistered
posted
Sak, I do not have bart or any of the co-infections; just chronic lyme and all these other things I found out about after my 4-06 new LLMD complete body lab testings.
I was on abx 18 months pulsing: 3 days on doxy; 2 off, and 3 days on biaxin, 2 days off; then doxy, etc. Had to write this on my bathroom calendar where I keep those pills to keep me straight.
I herxed in my right arm/shoulder for 18 entire months! I thought I'd never get rid of the 24/7 PAin I had in that arm. Felt like I was someone's punching bag. Then one day it was GONE; thank you God!
I still have lower back, excruciating pain in my left joint/thigh area, and neck/upper spine PAIN, but use my frozen ice packs or moistened heating pad on them.
So don't give up; there is HOPE and success along life's bumpy super highway, but there is light at the END OF THE TUNNEL. Bettyg
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
Hi SAK,
How are you doing? Sorry it has been so hard.
I have been on abx about the same amount of time as you. I started a round of Malarone for Babs last month. I got so sick. Also more overwhelmed and angry! So I am on a break, but have to face the music soon. Maybe we can encourage each other.
You mentioned balence--I read that equilibrium problems are a bab symptom. The kids and I have it to some extent. So could the problems walking be partly a herx? I think the Mepron will help.
posted
CSM is cholestyramine -- probably spelled that wrong. The guy who coauthored the Mold Warriors book came up with the protocol using CSM for neurotoxins. Helps some people more than others.
The way hubby used to describe his babesia problems was he said it felt like he was trying to walk in waist deep water. He didn't have true vertigo or room spinning dizziness -- just felt off balance.
Hang in there.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Hi sak I have lyme and earlickia (not spelled right, I spelled it as its pronounced)
I been on doxy 600mg a day & cholestyramine 3 to 4 packs a day, and tons of water, the first 2 weeks everywhare that hurt in the past now all
hurt at the same time and 10 times as bad, then after a 2 weeks the pain went down. If you havent tryed the cholestyramine, you may want to,
it does bind up and remove bacterial die off but may increase pain for 2 or weeks, ask your lyme doc about it.
My thoughts and prayers are with you hang in there, Later Bruce
-------------------- CFS for 20 Years then found LYME the root cause! Am dealing with several viruses also. Posts: 89 | From Alliance Ne | Registered: May 2006
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