posted
I'd had Lyme disease for almost a year before beginning antibiotics. I've been taking antibiotics for 1 month now. I'm no better and sometimes feel worse than before I started treatment.
I'm interested in hearing about some of your personal experiences. How long did it take for you to feel better after you started antibiotics?
Posts: 18 | From Tennessee | Registered: Jun 2011
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posted
I had it for 16 months, been on abx for 9 months. I also have Babesia, and Bartonella. Everyone is different, different immune systems, and there are different strains of Lyme and co infections.
I am doing sooo much better than I was, I started to turn a corner after about 6 months.
I am also doing Buhner protocol, doing a strength version of yoga every other day with some weight lifting. Eating an anti inflammatory diet. No gluten, dairy or sugar.
Posts: 845 | From Northeast | Registered: May 2011
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posted
I've had it for at least 4 years and have been on abx for almost 8 months. I also have bartonella. I'm about 50% better on good days...
Posts: 56 | From California | Registered: Mar 2010
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I had it for one and a half years before diagnosis. I was in bed the first month and then began the crawl back to life the second month. By the fourth month I was doing things again.
But I made the mistake of thinking I was only infected with Borellia. The following winter I got sick again and needed to treat bartonella. Then Babesia emerged and I was very sick last fall when I started treatment for that.
I am usually much better in the summer and worsen in the fall/winter. Be sure you see a good LLMD and figure out which co-infections you have - earlier rather than later - so you are addressing everything in your treatment.
Follow the "rules" - eat for optimum health and take good care of yourself.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
Recent research indicates that because of biofilm it takes 1000times the amount of antibiotics. So it is important to work on breaking down the biofilm.
[ 06-26-2011, 03:07 PM: Message edited by: GiGi ]
Posts: 9834 | From Washington State | Registered: Oct 2000
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lymeboy
Unregistered
posted
does this apply even if you are treating biofilms as well?
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
lymeboy, that would depend on how successful you are in breaking up the biofilm, and whether you are adding more biofilm by your daily intake (such as mag stearate).
Posts: 9834 | From Washington State | Registered: Oct 2000
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James1979
Unregistered
posted
Gigi - you sound like you know a lot about biofilms. Can you recommend a favorite book or source so we can learn about them? Thanks!
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lymeboy
Unregistered
posted
are there foods that create biofilms?
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posted
Hey Tennessee1, I had it for almost a year before being treated as well, I also have Bartonella along with Lyme. After 2-3 months on abx I came back to about 90% healthy but then plateaued. I would go a few months without symptoms but would then relapse. I was getting frustrated. (I've been treating for 14 months now) About a month ago I began to exercise 5 days per week, hitting the steam room for 20-30 mins after each workout to detox and to kill the bugs that hide in the dermal layer. I have felt 99-100% back to normal since I have started exercising. I had read Dr. B's guidelines but didn't have the energy to workout, however I fully believe that you WILL NOT get 100% better without exercising.
Good luck to you!
Paul
Posts: 43 | From Cleveland, OH | Registered: Apr 2010
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I had undiagnosed lyme disease (and babs and bart) for at least 10 years before starting treatment.
I didn't notice any change until after taking meds for 6 months.
In April, it was 6 years since I completed my treatment and I am still symptom free, enjoying my life.
The doc is the key to getting rid of this disease. Can't emphasize that enough.
I went to a doc who followed the Burrascano lyme treatment guidelines. That's what got all my friends well also.
TF, I always love your posts. They help me feel not so hopeless.
When you started seeing improvement at 6 months, was it subtle or pretty big? ( I have seen several things go away, but many things stay the same or get worse ).
And, how long were you in treatment? How long until you KNEW you would be ok again?
Posts: 1142 | From South | Registered: Dec 2010
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I treated for a little over 3 years. I had 3 months of "try everything" type treatment with many different meds (1st doc), then 2 years of lousy treatment which consisted of high dose amoxicillin the entire time (2nd doc). Then, I had one year of Burrascano type treatment (3rd doc) where I was tested through Igenex for coinfections, treated for lyme with 2 meds, and treated for my coinfections.
I started noticing an improvement on the amoxicillin (6 months into treatment--3 months on amoxi). It was some improvement in my absolutely horrendous fatigue.
However, on the amoxi, I still had the extreme muscle weakness. So, for those 2 years, I still could not stand for longer than a minute, walk more than 2 blocks, etc. I still had the false menopause, and after 2 years of this treatment, I began getting new neurological symptoms--specifically, I got trigeminal neuralgia which was a complete nightmare.
I knew I would be OK again when my Burrascano doc treated lyme, bart, and then babs and I saw the very noticeable babs flares diminish to nothing. I had no symptoms of any illness when the flares left.
So, I knew I would be OK again when I got to the symptom free point.
Then, winter was coming on, so I had to stay on meds for 5 more months. I knew during all that time that I was OK because I felt totally normal.
It was hard to continue the meds, diet, probiotics, etc. all that time, just to ensure I did not relapse. But, I did. Plus I did the 1 hour every other day weight lifting program prescribed by Burrascano for at least the last 9 months of my treatment. I continued the weight lifting for at least a year or more after completing treatment.
Plus, I don't drink or smoke.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Hambone
Frequent Contributor (1K+ posts)
Member # 29535
posted
Thank you TF!!!! This makes me feel better.
Please forgive me for the million questions, but......
quote:Originally posted by TF: I knew I would be OK again when my Burrascano doc treated lyme, bart, and then babs and I saw the very noticeable babs flares diminish to nothing. I had no symptoms of any illness when the flares left.
What does a Babs flare feel like?
I tested negative for it, but have no idea if I actually have it or not. Not quite sure how to tell what is what.
Posts: 1142 | From South | Registered: Dec 2010
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
I went more than a decade untreated. I also had Bartonella. Months 3-4 I started to turn a corner as my monthly herxes started to become less debilitating. I too did a Burrascano type of treatment plan, and was off antibiotics within 9 months. I have my life back and have been off abx for over 6.5 yrs now.
The first couple months of treatment were pretty tough with a lot of ups and downs. I had Bartonella and treatment for it started from the getgo once I finally got to an LLMD. It was tough to see improvement, unless I looked back at my daily symptom log.
If you aren't keeping a daily sympton log, I suggest you do so. It will enable you to see miniscule improvements and also patterns in your symptoms and if any type of cycling is occurring (which could also help your LLMD in determining if you have coinfections).
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2257 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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posted
I have no idea how long I've had lyme and babesia, but have had CFS for ten years.
I started with toxo treatment, and quickly moved to babesia meds, and had significant improvement within nine months.
Posts: 964 | From san diego | Registered: Oct 2009
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posted
@GiGi... you said "that would depend on how successful you are in breaking up the biofilm, and whether you are adding more biofilm by your daily intake (such as mag stearate)."
I've noticed that consuming products with Magnesium Stearate makes my symptoms worse. Is there any more information anywhere on how Magnesium Stearate contributes to biofilm? I'd like to learn more about it.
-------------------- IgM: [18++,31+++,34++,41++,83-93+] [39 IND] IgG: [41 IND] Positive according to IGeneX. Negative according to CDC. Negative for co-infections. Currently treating for Lyme, Bartonella, Babesia Posts: 225 | From Minnesota | Registered: May 2011
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Hambone, I give a description of my babs flares here:
posted
I was 1/2 year sick before treatment, turned corner 2 years later, lyme, bart, mycoplasms and possible babesia. Cd57 200-390. Hard to knock out this nasty bugs
Posts: 371 | From velocity of light | Registered: Sep 2009
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Haley
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Member # 22008
posted
I was sick 1 1/2 years before treating. I would say that I started to believe I might turn a corner after 2 years of treatment.
I attribute my finally feeling better to a drastic change in diet, treating Babesia, and exercising with weights. I am also trying to address biofilms but I don't know if my methods are effective.
My biggest problem is brain function and it took a while to figure out that it is probably due to Babs or some parasite. I still have not had a positive test for Babs but the meds for Babs seem to be most effective for brain function.
Posts: 2232 | From USA | Registered: Aug 2009
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
I'm still fighting the fight and it's been too long. But I seem to get blood sucked too often and it just seems like it changes so often.
I don't believe abx is the "magic" pill for everyone. Some people can't find the right tx with abx. That's my honest opinion. That's my honest experience.
It's much bigger than just the perfect abx or combo of abx or combo and triple doses of anything. It's not easily answered by anyone or any LLMD.
It's a process and really a lifelong process of finding what works for you.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6444 | From Louisville, Ky | Registered: Jan 2002
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Hambone
Frequent Contributor (1K+ posts)
Member # 29535
posted
quote:Originally posted by TF: Hambone, I give a description of my babs flares here:
posted
I have been on treatment for a month as well. I am feeling very badly now. I had a good first week, then relapsed, then maybe a good third week, and now feel really really really badly. I really feel like crying. I just went back to work today, but started feeling lousy a week ago.
Doc told me to expect a backslide about now. What I don't get is why? And why is it that I am eating only protein veggies and water and gain weight when I feel like this. Is it toxins? I just need some support.
I also need to go to sleep...and wish I could when I feel like this.
None of this makes sense to me.
-------------------- Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009) Dx with chronic Lyme May 2011. LLMD April 2012, Treating with omnicef/zith Lots of supplements! Posts: 640 | From Connecticut | Registered: Apr 2011
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posted
I've been on abx for about 2 years now -- just started using Rocephin -- and I'm still suffering from the brain inflammation issues and accompanying symptoms. Sucking my life away.
Posts: 372 | From west of the mississitty | Registered: Jul 2009
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posted
2 years on orals. When i cut out sugar, refined carbs and gluten I really noticed an improvement.
Posts: 234 | From BC Canada | Registered: Aug 2008
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posted
I tried that and think that I do, sometimes, but I really can't totally cut all that stuff out of my diet.
Posts: 372 | From west of the mississitty | Registered: Jul 2009
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