posted
How will I know when to stop ABX? 9 months treatment~feel 95% pre-Lyme only a flare up now and again for a day or two. Just SOOOO tired and scared of the damage the ABX are doing to my body.
Posts: 501 | From Hudson Ticky Valley, NY | Registered: Aug 2009
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seekhelp
Frequent Contributor (5K+ posts)
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posted
I wish I knew. I ask myself this question every single day. I personally feel the 'until all symptoms resolve' theory is unrealistic and foolish to a degree. You WILL lose your health status when you are ill for years. You're not the same person anymore.
It's easy to live in the past and remember how you felt 10+ years ago. Well, we all age too! Even normal people who are 40 won't feel like they did at 30. Just gotta be realistic and think it out well.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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sutherngrl
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I totally agree with Seekhelp on this one. They say treat a few months after symptom free; but I'm not sure that most of us will ever feel symptom free again.
My doc says even when the ketes are all dead it will take a few years to ever feel "normal" again. The body has to "recondition".
You have to realize that you have a "DISEASE". Once you have a disease......not sure you can ever be the same again. Not trying to be negative. I think it is a realistic view point.
I have great intentions of feeling normal again at some point; but I also want to be prepared for the possibility that I won't ever feel like I did before lyme.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
I agree as well with Seekhelp. Looking for our symptoms to resolve 100% before stopping treatment is not realistic for many.
I treated until I stopped seeing progress. I got to about 90% with treatment and was stuck there for a few months. I stopped antibiotics over a year ago and actually improved a little further...I'm at probably 95% most days.
It has been a relief in many ways coming to terms with the fact that the residual symptoms are just permanent damage but to be thankful for how far I've come...
Posts: 561 | From mass | Registered: Jul 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
My only hurdle before I stop treatment is to go to a LLMD who actually treats as they should (Dr. B protocols). Until I try the real deal, I go on. I owe it to myself to do the right thing. He didn't become the 'Lyme kingpin' for no reason. None of the LLMDs I've seen to date were anywhere nesr his recommendations and that bothers me a lot.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
I have to agree with the above posters except for on one thing... True as you get older you will feel less entergetic but I believe you can get to 100% again.
Also, you say you are 95% which is great! but you are sooo tired. Perhaps you have something minor going on that has not been addressed vitamins, minerals etc.
Have you started working out... I started working out two weeks into treatment and that is what really helped me with fatigue. remember to ramp yourself up when you start dont try to do to much to quick I did that yesterday and learned my lesson haha.
Personally, and please remember I am not a doctor I am just a guy at a computer giving you his opinion. If I was at 95% and could jog, workout and felt good I would stop ABX but keep preventive measures up. Include needed vitamins, diet and a general healthy lifestyle and see how I do.
The doctor I see right now from what I understands treats to 90%, thats 90% but symptom free so I may feel tired or deconditioned, but then I believe we are stopping abx.
good luck
Posts: 286 | From St. Louis | Registered: Dec 2009
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posted
I trust my LLMD's judgement on this topic, but personally I also think a way to gauge if treatment is still productive is whether or not you still get Herx reactions.
Every time my LLMD changes my line up of abx or adjusts the doses, I Herx. So while I'd like to think that if I stopped now I might slowly recover from damage caused by Lyme, the Herxing makes me aware of ongoing active infection.
I'm very concerned about stopping too soon and leaving myself open to relapses in the future. I believe that Lyme can go dormant for a time, waiting for opportunistic conditions to resurface.
Since my LLMD advices me to continue, and my Herxing and concerns about relapse are consistent with it, I'm staying the course for now. I've been treating for about 1.5 years.
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
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TF
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Member # 14183
posted
I completed my lyme treatment 5 years ago. I treated for a total of 3 years--2 years of poor treatment and 1 year of good treatment.
I had had lyme disease undiagnosed for 10 years.
Part of my mandatory treatment was the Burrascano type 1 hour weight lifting program every other day. My lyme doc said I would NEVER get well unless I did it.
This was tough for me because my primary symptom for those 10 years was extreme muscle weakness. Nevertheless, I started to do the weight lifting.
It took me a few months to work up to a 1 hour program. I did a full body workout every other day. As time went by, I was able to lift heavier and heavier weights.
By the time my doc said I could stop meds, I was not deconditioned at all. In fact, I was in great condition.
That's how I got my same life back as what I had before lyme disease. And, I have never relapsed in spite of getting steroid injections in my spine about 2 years after finishing treatment.
That Burrascano exercise program is a MUST if you don't want to relapse once you stop meds. It does many important things such as boost your immune system so it can successfully fight any germs that remain, drive the meds deep into the muscles, raise the body temp which probably helps kill the germs, etc.
It was thrilling to me to see my progress with this program. I was getting muscles, looking good, feeling strong, etc.
I started this about 9 months before I completed my treatment. Don't wait to stop meds to start getting your body conditioned. Lifting weights is the best thing you can do for yourself if you are contemplating stopping medications. It is the best insurance against relapse (as long as you put one day of rest in between sessions).
I refer people to 2 different lyme docs who both follow Burrascano, and both of them tell their patients that this exercise program is a must. You will feel alive and well again. Please try it.
From p. 31 of Burrascano:
LYME DISEASE REHABILITATION
Despite antibiotic treatments, patients will NOT return to normal unless they exercise, so therefore an aggressive rehab program is absolutely necessary. It is a fact that a properly executed exercise program can actually go beyond the antibiotics in helping to clear the symptoms and to maintain a remission.
Although the scientific basis for the benefits of exercises is not known, there are several reasonable theories. It is known that Bb will die if exposed to all but the tiniest oxygen concentrations. If an aggressive exercise program can increase tissue perfusion and oxygen levels, then this may play a role in what is being seen.
Also, during aggressive exercise, the core body temperature can rise above 102 degrees; it is known that B. burgdorferi is very heat sensitive. Perhaps it is the added tissue oxygenation, or higher body temperature, or the combination that weakens the Lyme Borrelia, and allows the antibiotics and our defenses to be more effective. Regular exercise-related movements can help mobilize lymph and enhance circulation. In addition, there is now evidence that a carefully structured exercise program may benefit T-cell function: this function will depress for 12 to 24+ hours after exercise, but then rebound. This T-cell depression is more pronounced after aerobics which is why aerobics are not allowed.
The goal is to exercise intermittently, with exercise days separated by days of total rest, including an effort to have plenty of quality sleep. The trick is to time the exercise days to take advantage of these rebounds. For an example, begin with an exercise day followed by 3 to 5 rest days; as stamina improves, then fewer rest days will be needed in between workouts. However, because T-cell functions do fall for at least one day after aggressive exercises, be sure to never exercise two days in a row.
Finally, an in intermittent exercise program, properly executed, may help to reset the HPA axis more towards normal.
Posts: 9931 | From Maryland | Registered: Dec 2007
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WildCondor
Unregistered
posted
Usually when you get to the point of 95% better (congratulations) you can start a pulse program and only treat with antibiotics for a few days each month, instead of daily.
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Brussels
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Member # 13480
posted
Jen, I wouldn't stop treating until I'm 100% symptom free. No way.
In my case, if active infection was left and I abandoned treatment, I fell sick too fast and going back to stage zero-health again was too risky.
If I were 95% better, I would simply shift to more natural treatments, make an exercise plan as suggested above, certainly continue on healthy diet without cheating much, and work out to get rid of the 5% left.
The last symptoms are the HARDEST to treat.
Reason is logic: the first symptoms that disappeared reacted to treatment you tried. The stubborn symptoms that rested are the most difficult to go because you still haven't found the right treatment!
They usually require a very different approach from only 'killing-cleansing' approach, in my view.
This is the point most practioners get clueless on how to help patients further.
I was lucky to have got good practioners that were really holistic. And I try lots of things by myself.
I would NEVER imagine that problems can get better with dental work, with scar treatment, switching treatment, tapping, with psychological work, with things like EFT, with heavy metal detox, cranio sacral massage, pulsed infra red therapy, green laser therapy and so on...
And homeopathy can also help many of the last problems in amazing ways too.
Every new tick bite, or every relapse, it took me not too long to get to 50% better, even to 70% better. Once I knew the treatment to do, it was rather 'fast' to reach 70%.
The next 20% took rather longer. But it was the last 5-10% of symptoms that were left that took the longest in matter of time. When you reach 95%, you even don't even know what are your last symptoms for sure.
I'll explain you why. Some things like 'seeing more sharp' suddenly made me realize I was not seeing as sharply before. But I didn't know it, until my vision became sharper!
Another symptom I had and I didn't know (at close to feel 100% better): lack of pleasure for food and for music. When taste started to really come back, it was like paradise on earth! I even didn't know I didn't taste food properly for years!
I realize that deeply enjoying food tastes is an ability and that requires a healthy body! The same apples I ate during lyme didn't taste as they did after lyme. The difference was huge!
I almost felt like having an orgasm just by tasting fruits!
Same as feeling music back! I will never forget the emotion of being 'able' to feel Bach again. I only realized I couldn't feel Bach as well during lyme when the profound feeling came back!
Then dreams coming back, and the memory of dreams....
At close to 100%, believe me, symptoms will still clear on. And many symptoms, you couldn't even call them symptoms, like the ones I cite above.
I am 43 and I feel better now than 15 years ago.
15 years ago, I suffered from many GI troubles, I suffered from a very bad chronic yeast infection on skin, I was not as strong as now.
Lyme left me as damage more white hair than I wished to have and I think my teeth got older looking than before lyme. I couldn't get pregnant again after having lyme either.
But in terms of energy and lyme symptoms, I swear to you guys, they are gone. 100% gone. I feel that during lyme disease and after fighting years of chronic yeast, I aged more than I should, that is true. High oxidation, for sure.
There's another lady in this forum, Sixgoofkids. She also feels better now than she ever has memory of. She's got 6 kids!
In my opinion, if you still didn't reach 65, you can feel better than 10 years before. After 65, I guess age is will speak louder.
Posts: 6199 | From Brussels | Registered: Oct 2007
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posted
I have always had only mild Lyme symptoms. I would guess at my worst, I have been at 90% or more. On abx, I feel better. I have had days where I have felt more energetic than I remember ever feeling so I can't really say what my normal is.
I have been treating for 20 months and don't plan to stop until all of my symptoms are gone. I don't believe any muscle twitching or air hunger is a good thing and something to accept.
I just started with a new LLMD and we are upping my abx in hopes of knocking it out for good. I am more scared of what Lyme can do than I am of long term antibiotics.
Posts: 984 | From US | Registered: Dec 2007
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posted
Like jkmom, my Lyme symptoms have never been very severe. I have been sick for just over a year now, and in treatment since 10 weeks after the tick bite.
I have noticed slight improvement over the past 2 months, but otherwise I have felt about the same ever since I got sick--maybe 70-80% on my worst days, and 90-95% on the best ones.
I made the mistake of thinking, at first, that because my symptoms were relatively mild compared to what some people suffer, and because I found the tick and diagnosed myself early and got on antibiotics in weeks instead of years, and because I don't have any obvious symptoms of coinfections apart from Lyme, that it would be easy to get rid of.
Well, I've been treating for about 10 months now with only slight improvement. I'm not sure I've even had a handful of days when I felt completely normal.
The fact that I still have any mild symptom means it is persistently still with me, and I don't intend to stop treating until it feels completely gone and then some. If I quit too soon or don't take care of myself, I may make a relapse more likely, and it might not treat me as gently as this first round has.
Planning to make it the last round if it's up to me.
However, if people have been treating for a long time with no more improvement, then there may be a point where you either need to try a different treatment or decide you've done as much as you can.
It's hard to know because everything about Lyme is so uncertain. On the one hand, effective treatment can take years and years, and on the other hand, there is a point where doing the same thing again in the same way that didn't work before is of limited usefulness.
I guess I would say, if you have any doubt about stopping, don't stop. If you are completely convinced that it's time to stop, then maybe it is, if your experienced LLMD agrees.
I am far more concerned with the possible damage from untreated or undertreated Lyme than with the risks of antibiotics, which can be counteracted and managed.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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ping
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Member # 6974
posted
quote:Originally posted by WildCondor: Usually when you get to the point of 95% better (congratulations) you can start a pulse program and only treat with antibiotics for a few days each month, instead of daily.
BINGO! You have to pull back to find out where you are, sx wise, in the first place. I went through this a couple of times until into remission. I had active infection for almost 50 years before being diagnosed, so I have left overs and will never be 100% free of everything because of permanent damage. However, I hold a full time job of 10 hours per day, I swim, BBQ with friends; all sorts of things.
Might be time to start weaning yourself away from full dose abx and find out. Not suggesting you do this without your LLMD's knowledge or that you quit abx altogether. You should be able to re-start tx should sx's return quickly or severly.
Best to you. I know it's a tough decision.
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
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