When I was taking SO many different types of abx, I was worse. I bet I had the same llmd as you.
I quit taking them for 8 yrs and was great.
Now, back on minimim abx, and very slow and not much of anything... but better. (had a relapse?).
I so agree with you, as far as I was worse taking all the different combo's and so much strength of them.
I'm pretty 'normal' and feeling great now too.
I felt that the drugs were killing me, and not killing the disease. I feel a lot of people in here are over medicating big time. Whether its with rx types and/or/even supplements.
We are all so different in disease and how we handle things... I'm so happy to have found the llmd I did this second time that believes in treating the disease slow and gentle on the body. He won't allow any hard or harsh herxs as it's too hard on the body.
-------------------- Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again! Posts: 941 | From AZ-MT | Registered: Oct 2004
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posted
I've been wondering the same thing recently. I got significantly better the first month of Doxy, but I've gotten sicker since. But I've taken med breaks and also seen little improvement, so who knows. My greatest wish is there were more research so that doctors really knew how to treat this.
-------------------- Lyme, Bart, possible Babs Currently on IV Doxy, Bactrim, Zithromax, Nystatin, Mepron Been on nearly every antibiotic since 10/09
posted
I was at the point of seriously considering chinese herbal treatment. I'd have thought it was working too, when really i doubt it would have done anything.
My "mantra" when i stopped meds was: "I am not going to start back up unless i get worse than was while i was taking them"
I still had bad days for quite a while afterwards. But eventually they stopped.
Posts: 339 | From Outer Space | Registered: Aug 2009
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
I agree... This rule about continuing abx until you are symptom free for 2 months is what is keeping everyone on them.
I have heard from a reputable source that the time it takes to clear your body of all the toxins you've put into it, will cause all kinds of symptoms. Some may even think they are relapsing when they are actually going through the necessary process of eliminating those toxins.
posted
I don't agree with typical ILADS abx dosing.
There are 2 extremes: The IDSA and ILADS. There is not enough middle ground.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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quote:Originally posted by BHealthyNow: Also, how long have you felt better? I've had symptom free weeks, but never sustained.
What matters is that i'm improved immensely. I didn't have a symptom free MINUTE before.
Posts: 339 | From Outer Space | Registered: Aug 2009
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lululymemom
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posted
I, for one, hope your trend continues.. It would put a new perspective on the way we view lyme treatment.
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Wow, amazing. I'm scared as the doc you're referring to is my LLMD I believe. You really believe they would medicate forever? I hope not. Do LLMDs EVER say enough is enough or does the ride go indefinitely?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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quote:Originally posted by seekhelp: Wow, amazing. I'm scared as the doc you're referring to is my LLMD I believe. You really believe they would medicate forever? I hope not. Do LLMDs EVER say enough is enough or does the ride go indefinitely?
No. I don't think they would medicate forever.
I may also be an exception.
All i know is i was very sick 6 weeks ago. Today i am not. All i did was stop.
Posts: 339 | From Outer Space | Registered: Aug 2009
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quote:Originally posted by BHealthyNow: How long were you sick before abx?
Not long at all. I was well aware of Lyme so i was tested and started treatment the same day i had symptoms.
But i don't think that's really even relevant to my case. Because i have no idea when my lyme symptoms overlapped with the drug toxicity symptoms. I'd still be sick today if i were treating.
Posts: 339 | From Outer Space | Registered: Aug 2009
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
The good news for you is co infections don't sound like they are a problem for you.
Most would have relapsed already w/ Bart/Babs
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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quote:Originally posted by canefan17: The good news for you is co infections don't sound like they are a problem for you.
Most would have relapsed already w/ Bart/Babs
I had babs. I had the symptoms and the blood test to prove it.
Either my body beat it on it's own, or 19 days of mepron and biaxin took care of it.
Posts: 339 | From Outer Space | Registered: Aug 2009
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onbam
Unregistered
posted
Congrats! I hope you remain well.
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TerryK
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posted
I'm so glad you are feeling better however your response is preditctable. I'm sure if you asked your LLMD about it he would explain it to you.
I've had several experiences where I responded in a similar way. I had a 5 year remission once after abx for a non-lyme condition. I didn't know lyme was causing my illness. I was taking abx for pneumonia
The abx were making me very sick which I thought at the time was an allergic reaction but my doctor insisted that I continue abx to clear the pneumonia. I was on for a long time since I had such a hard time keeping it down. Now I know that abx made me so sick due to a high pathogen load and my body's inabiity to deal with the die-off. I can't say that is the case for everyone but it certainly was for me and for a number of others.
For years. the IDSA doctors would tell people to wait for awhile after abx because they would get better after a time. Sometimes they did, sometomes they didn't. Probably depended on many variables.
As long as you are feeling really sick on abx and it is not due to candida, abx allergies, porphyria and other known issues with abx (besides lyme) then you probably still have a fairly high pathogen load.
If one doesn't have co-infections (and maybe even if they do) and their pathogen load is down very low and they have good immune system function and nothing compromises that, I think one could stay in remission for a number of years.
I'd be a little concerned that your pathogen load is still high because you were still sick on abx BUT I don't know your history or the liklihood that the abx could be causing other issues that have symptoms that overlap with lyme (herx) AND I'm not a doctor.
This scenario is one very good reason to have an LLMD whose judgement you trust. They will use their clinical judgement to determine whether your pathogen load is down enough to expect a long term remission or if something else is causing symptoms besides lyme or if you need to stay on for awhile longer.
As you know, there is much about this infection that is unknown but from reading. talking to my doctor and my own experience I think this makes sense.
Good luck and enjoy feeling good!!!
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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lululymemom
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posted
Or maybe your immune system is strong enough to keep things in check..
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I quit abx twice because, like you, I thought i was experiencing toxicity from the drugs I went on herbs both times. Both times I lasted about 5 months before a major relapse. As herbs do not cause toxicity I know it was the disease and nothing else.
The end of October, this year, I quit abx to detox and get rid of yeast. Three weeks later i could hardly walk. I am still trying to recover from that.
I did not know all of the infections I had so I would treat for one and get hit by another - treat for that one and then another one would emerge.
If I never took anything for bart or babs, how could my body's immune system, which is weakened by Lyme (that it what it does), clear it up on it's own? That I believe is one reason I have not recovered yet.
There is some danger in your claim. I would wait several more months before announcing yourself cured. Perhaps you do not have bartonella which is the quickest infection to reemerge when you quit drugs. Experiments have shown that the longer lyme is forced into the cyst state, the longer it will take to become active again. Even before my diagnosis there were periods of time that I felt ok. That is the way it is with lyme.
I have had more than my share of frustration with LLMDs but they actually put themselves at tremendous risk treating us, as they could lose their license to practice medicine. There are many many people that are sick and need help. And there is often a long waiting list to get in to to see the best doctors, so no need to keep us detained in treatment longer than absolutely necessary.
-------------------- 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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quote:Originally posted by nefferdun: There is some danger in your claim. I would wait several more months before announcing yourself cured.
I never used the word cured. I said i'm "better" and "symptom free"
I am 6 weeks without meds now. So far each day is better than the next. I feel great.
Posts: 339 | From Outer Space | Registered: Aug 2009
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posted
I think this is a good example of why we need to be our own health advocate.
I have done very well on an aggressive lyme/babesia treatment protocol. I have known others who just don't improve on abx. There is someone in our lyme support group who has tried many modalities, and is still sick years later.
We must know what resonates with us. There are so many nuances to this illness. At the least, I believe in muscle testing products and abx. If we are putting products in our body that are not good for us, then we are further stressing our system. I'm a believer in electro-dermal testing to ensure the treatment protocol is what my body needs.
Sounds like your immune system was able to kick in and keep the critters at bay. That is the goal for all of us!
Posts: 964 | From san diego | Registered: Oct 2009
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posted
Congratulations on your recovery! I believe you had acute Lyme and not chronic Lyme, as you say you started treatment as soon as symptoms appeared. Most ILADS doctors would agree that acute Lyme is curable with a fairly short course of antibiotics. I agree with you that the continued use of alot of unnecessary drugs was probably making you sick.
Most people on this site suffer from chronic Lyme, not acute Lyme, have had years of symptoms before they started treatment.
With acute Lyme, the spirochetes are circulating in your blood and have not morphed into cyst forms or gone intracellular to any great degree, and antibiotics quickly knock them out.
I have not heard of anyone with chronic Lyme who was cured or even put into remission with a short course of antibiotic treatment.
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
I spoke with a representative on the CanLyme website who had Lyme for 8 years. She told me she went on Doxy for 3 weeks and it made her very ill. She then switched to herbals and FIR Sauna treatments and went into remission.
That was 7 years ago and she is still in remission today. I do believe it can happen, but you have to find that magic bullet that will work.
posted
Congrats on getting better. I'm glad you caught the illness early - that probably made all the difference.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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quote:Originally posted by lululymemom: I spoke with a representative on the CanLyme website who had Lyme for 8 years. She told me she went on Doxy for 3 weeks and it made her very ill. She then switched to herbals and FIR Sauna treatments and went into remission.
That was 7 years ago and she is still in remission today. I do believe it can happen, but you have to find that magic bullet that will work.
Cases like these stand out to me as potential "over-treatment" cases. I'd say there's certainly a chance that the sauna and herbs were doing nothing. And she got better simply because she stop taking the medication that was actually making her sick.
Posts: 339 | From Outer Space | Registered: Aug 2009
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beths
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Member # 18864
posted
After 4 years of taking abx, I felt I was "done" I still had symptoms, but my LLMD said ..lets try a break. The key is to make sure off abx you are not getting WORSE. The first 3 weeks I felt pretty bad..I detoxed a lot. Now it's been 5 months, and I feel better every day. Keeping track to make sure I don't feel worse. i have many symptom free days, and keep feeling better. i think "breaks" are good so we can re-assess.
Posts: 1276 | From maryland | Registered: Jan 2009
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posted
So the take home message is that we are wasting our time taking antibiotics, that the treatment is worse than the disease? Sorry, I don't buy this. People who say this kind of thing never do come back and tell us a year later whether that was still true for them or not. Or if it was true for them, it certainly is not for everyone.
For every claim like this, I can tell your about someone who was refused continued treatment by their insurance companies and ended up incapacitated or dead. On abx, they were getting better. Off them, they got worse.
Posts: 8430 | From Not available | Registered: Oct 2000
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quote:Originally posted by lululymemom: I spoke with a representative on the CanLyme website who had Lyme for 8 years. She told me she went on Doxy for 3 weeks and it made her very ill. She then switched to herbals and FIR Sauna treatments and went into remission.
That was 7 years ago and she is still in remission today. I do believe it can happen, but you have to find that magic bullet that will work.
Cases like these stand out to me as potential "over-treatment" cases. I'd say there's certainly a chance that the sauna and herbs were doing nothing. And she got better simply because she stop taking the medication that was actually making her sick.
So you're saying 3 weeks of Doxy is overtreatment?
-------------------- Lyme, Bart, possible Babs Currently on IV Doxy, Bactrim, Zithromax, Nystatin, Mepron Been on nearly every antibiotic since 10/09
Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
I agree with Paulie. this was a case of acute Lyme. If I stop my abx I get very ill. I have tried and it doesn't work. My main problem is with my brain. Maybe the brain stuff is more difficult to get rid of.
Posts: 2232 | From USA | Registered: Aug 2009
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
You have to be careful not to oversimplify this message. If the immune system is stable, it can hold back lyme for quite sometime until there is another trigger.
For me, mono was the spark that caused the fire.
Doing nothing, which is essentially what is being advocated, can be very dangerous.
Meds do not always make people feel terrible if they are used correctly.
There are exceptions to most rules of course.
For me, the initial year I spent doing nothing had me running to every MD under the sun looking for answers.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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quote:Originally posted by lou: So the take home message is that we are wasting our time taking antibiotics, that the treatment is worse than the disease? Sorry, I don't buy this. People who say this kind of thing never do come back and tell us a year later whether that was still true for them or not. Or if it was true for them, it certainly is not for everyone.
For every claim like this, I can tell your about someone who was refused continued treatment by their insurance companies and ended up incapacitated or dead. On abx, they were getting better. Off them, they got worse.
The take home message is that over-treatment is very real. I'm not saying it's the case with everyone, or even anyone else.
I'm not lying, it was the case with me. Sorry if you don't buy it.
Posts: 339 | From Outer Space | Registered: Aug 2009
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posted
I appreciate you sharing your story. There are a lot of people here who hesitate to take antibiotics. If there's any consistency with lyme, it's that it's inconsistent. It affects everyone different. I'm a little surprised at the responses here -- it seems like people are trying to debate your choice of treatment (or should I say lack thereof). I think we all need to be supportive of each others choices.
Posts: 707 | From Colorado | Registered: Jul 2010
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quote:Originally posted by jlp38: I appreciate you sharing your story. There are a lot of people here who hesitate to take antibiotics. If there's any consistency with lyme, it's that it's inconsistent. It affects everyone different. I'm a little surprised at the responses here -- it seems like people are trying to debate your choice of treatment (or should I say lack thereof). I think we all need to be supportive of each others choices.
i wouldn't hesitate for a second. I do believe they are what made me better. However, i believe that i continued treating for too long and it caused symptoms that i mistook for continued lyme symptoms.
Posts: 339 | From Outer Space | Registered: Aug 2009
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posted
glad you figured it out!
Posts: 707 | From Colorado | Registered: Jul 2010
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
There is debate about this for a number of reasons but the most important reason is that we don't want to see a slew of newbies stop antibiotics against their doctors orders and end up sicker than when they started or worse yet, stuck with chronic lyme.
Those of us who have been around for awhile have seen time and time again that treatment that is too short does not work. After all, this is at the root of the chronic lyme disease debate. Most LLMD's are well aware of treatment issues and give advice based on thier training and experience. I would not take the advice of a non-literate lyme doctor over an LLMD.
There are issues that make 3030club's current scenario happen even though he may be stopping treatment too early. Not saying that he is because we simply do not know at this point in time.
Those who have not been infected for very long have a very narrow window of opportunity where they may be able to stop themslves from having chronic lyme disease. If one stops treatment too soon, that window is gone. This is a BIG deal!!!
Terry I'm not a doctor
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
I agree that you should never do anything against the word of your doctor. I simply sought a second opinion from another trusted doctor.
I don't think you can beat lyme without apropriate treatment. Which for me included Antibiotics, i would think most if not all people with lyme need an extended course of abx.(although i don't know all that much about alternative treatments)
I'm just trying to bring attention to the fact that, in my opinion and experience, over medication can bring on other symptoms and side effects that overlap with lyme and keep you thinking you're sick.
Posts: 339 | From Outer Space | Registered: Aug 2009
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lululymemom
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Member # 26405
posted
I think it's sad that you have to defend your progress report when we should be encouraging you.
You've made a valid point and one worth considering. Nobody ever said not to treat with abx, just to be mindful of the symptoms and where they're coming from.
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
the303club wrote: I'm just trying to bring attention to the fact that, in my opinion and experience, over medication can bring on other symptoms and side effects that overlap with lyme and keep you thinking you're sick.
Just to clarify, I think it's a good thing to bring this up. I know one person who used to post here who was sick and treating for a long time. He got well on anti-fungal treatment. I *think* he is still doing well. It does happen and it's a good thing to be aware of that fact.
It's also good to know that this is a phenomena that can and often does happen even when treatment isn't long enough.
The3030club wrote:
"I was giving my llmd 300 bucks a month for a follow up visit and paying another 300 to them for supplements, so why wouldn't they want me back."
That comment alone warrants that someone fill you in on at least the rudimentary reason that you could be having the response you are having despite inadequate treatment which I've already explained in a previous post.
The majority of LLMD's are honorable and would never consider treating for lyme if they didn't firmly believe it was necessary. From the sounds of it, both LLMD's that were treating you felt that you needed treatment and you got an opinion from another LLMD who agreed. Your regular doctor did not agree. No surprise there.
It would make me very happy if you never needed to treat lyme again!
posted
No surprise that a lyme ignorant doctor would tell you to stop taking meds. They do this all the time. They also tell you that you don't have lyme and don't need any treatment, regardless of your test results or symptoms.
The problem with what you have written is that it is not just a success story about yourself. It slams the lyme doctor who helped you and it gives advice to others who may not be experienced enough to know that every case is different and they cannot assume they should just stop their meds and everything will be fine. We have had several newbies wanting to do just that recently. You are not a doctor. Don't give strangers medical advice of this type.
For instance here is one of your statements:
"Please truly evaluate your situation accordingly.Get second Opinions. If you�re not getting better really think about who gains from your continued treatment.
This is really obnoxious.
If you get second opinions from people who know nothing about lyme, what good are they? If you are not getting better, maybe the answer is different meds, maybe it is because you waited too long to start treatment. With a complicated set of pathogens from a tickbite, it produces an illness that takes years for doctors to understand. How do you expect a newby with no medical experience to evaluate it? Etc.
[ 12-06-2010, 11:44 AM: Message edited by: lou ]
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Kudos! So happy that you are feeling better....let's hope that it continues!
Posts: 14 | From Port Allegany, PA | Registered: Sep 2010
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IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
I can understand this working for someone who had not had Lyme disease for very long.
But for someone like me, undiagnosed with Lyme for over 20 years... I know I would have died without starting abx treatment. I was already dying.
My LLMD had to start me out very slowly on mono-therapy because my bacterial load was so high, and it took over a year of abx before I was functional again.
His plan was 4 years of abx with small breaks in between. I have not been on abx that long, was only on them for about 2 years but during that two years I would stop ...feeling pretty darn good, and within a couple months my old symptoms would come back. And my immune panel shows that my immune system is functioning VERY well.
I also had been previously dx with Lupus, MS, and had a positive ANA.
No doubt that long term abx helped me. Would I want to stay on them for years and years... absolutely not. Yes, I believe they are toxic. But to die from the Lyme, or risk getting toxic from treating it..there was no second thinking on deciding to do the abx treatment.
I am now, almost 3 years later, off of abx (for the past two months or so) I did very well, but symptoms started coming back. I'm still very much functional though. I am moving on to trying herbal protocols (as my LLMD suggested we'd do after beating down the bacterial load with abx).
Everyone is different, so treatment will have to vary. But I did want to also point out... even if you are not on abx..it is ALWAYS a good idea to add probiotics. We need the good bacteria for good immune function.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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MichaelTampa
Frequent Contributor (1K+ posts)
Member # 24868
posted
3030 - thanks for sharing your story, another possibility to keep in mind!
Posts: 1927 | From se usa | Registered: Mar 2010
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
Hi the3030club, I for one appreciate your post. I don�t think you need to defend yourself in regards to your treatment plans.
If any new members have questions they should ask, we don�t find many shy members on this site.
I respect your decisions, after all, you don�t need our approval. Follow your heart, and I hope you continue to get well!
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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lymeboy
Unregistered
posted
so is the sentiment here that not treating is the key to recovery? I think you were overtreated, maybe. But overtreated for Acute Lyme. And you didn't have coinfections. Maybe. Congratulations on your feeling well.
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quote:Originally posted by the3030club: I agree that you should never do anything against the word of your doctor. I simply sought a second opinion from another trusted doctor.
I don't think you can beat lyme without apropriate treatment. Which for me included Antibiotics, i would think most if not all people with lyme need an extended course of abx.(although i don't know all that much about alternative treatments)
I'm just trying to bring attention to the fact that, in my opinion and experience, over medication can bring on other symptoms and side effects that overlap with lyme and keep you thinking you're sick.
Agreed. You don't have to defend yourself. Why can't some people accept or believe your story?
Generally,the only people here, on these forums, are the ones who did not get better easily.
There are many co-morbidities (other illness, predispositions,immune system function, etc) that affect ones ability to recover.
Some recover easly, some not. No need to be angry or unbeleiving.
Congrats 3030Club!!!
Posts: 819 | From East Coast | Registered: Apr 2009
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posted
Coming from someone who's had symptoms for over 10 years, I had periods of of time where Lyme was almost completely held in check.
It wasn't until I was put on steroids and I got sick last year that this all became a nightmare.
My problems before were all Bartonella related, but I could get by on a day-to-day basis just fine.
Sadly, and maybe because of my condition, once I stop 1 particular ABX, my symptoms come back within a week.
After reading everyone's posts it does make a lot of sense to me that this illness is only worse when something else is overloading the immune system.
Someone once said, "let disease run through, and do not try to smear it all over the place as it will only get worse."
I'm trying to find the line behind this, and accepted that I cannot eradicate this forever. Only live in harmony with it.
Posts: 829 | From MD | Registered: Dec 2009
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
kittywrote: Generally,the only people here, on these forums, are the ones who did not get better easily.
Not true! We get many new people looking for help. Some who have recovered come back to help new people and some of us who were sick a long time prior to diagnosis and treatment and (thus in treatment much longer) give of our precious time and energy to help newbies. We do it because we do not want to see others suffer the way we have.
I don't think anyone here is trying to make 3030 defend himself and in fact he has been very decent about those of us who are trying to explain why one might get the type of response he is getting when they may actually need more treatment. Not saying that is his case, just saying it happens often.
Lyme is a vry complicated illness. If it weren't, there would not be so much controversy around diagnosis and treatment.
Sorry to hear what happened to you wolfed out.:-(
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
I also think it's great that 3030's symptom free. I asked questions because I too have considered stopping antibiotics. I don't want to compare apples to oranges though, so I asked questions to understand how my case related to this one.
I'm sorry if you felt like you needed to defend yourself!
-------------------- Lyme, Bart, possible Babs Currently on IV Doxy, Bactrim, Zithromax, Nystatin, Mepron Been on nearly every antibiotic since 10/09
posted
Thank you for bringing a perspective to lyme treatment 3030.
it is your experience the best you now know. That is all anyone brings here best I can see.
It is quite possible that overtreatment could occur perhaps from a milder acute lyme. Not every bite delivers the same load.
Yours was explicitly acute by your description.
As for newbies, I would also hate to see a newbie choose unwisely.
However, I am not new to lyme but going on 4 months here and over and over and over again I hear the urgings to learn, self advocate and learn some more.
So many disclaimers are made in most posts that what works for one may not work for another.
I could read that in the first day. It hammers home. of necessity.
I find people sharing their own experiences and often...very often...very disparate experiences and treatment types.
No matter what thread you are on you have to pick and choose and evaluate.
Anyone could jump into nearly any thread on Med Questions and hear symptoms experiences and treatments that function quite differently for them than you.
I get that there is risk to stopping any treatment. There is risk to lyme & co and risk to all treatments.
for someone with acute lyme where is the line of stopping acute treatment? It is somewhere. With acute lyme you don't treat ad infinitum.
There is risk because there is no test to test for lyme itself and inadequate research to provide some quantifying factors to large numbers of people.
Even then, even then, there will still be variables between persons for too many factors to possibly list.
I agree you have responded well to remarks.
I will file in my mind this possibility. I learn from most anyone's experiences that I spend much time reading about.
To date I am not overtreated on dual high dosae abx, and my "proof" is I am getting better. I have been wrongly and undertreated over years, especially for bartonella.
Furthermore, abx as esential as it is is not the only factor that contributes to our recovery.
Unless we refuse to believe the stories of folks in here who share getting better with herbs, intense exercise, rife and so on.
So 3030 experience is one to learn on and from the responses as well
When I say learn I do not mean take it all as gospel for you. I mean use your discernemtn within what you know for you or file it for future.
From what I can tell that is the standard here. A place to share experiences strength, information, and hope.
The responsbility is ours.
-------------------- Not everything in life that can be counted counts and not every thing that counts can be counted...Albert Einstein Posts: 208 | From Northeast | Registered: Aug 2010
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quote:Originally posted by BHealthyNow: I also think it's great that 3030's symptom free. I asked questions because I too have considered stopping antibiotics. I don't want to compare apples to oranges though, so I asked questions to understand how my case related to this one.
I'm sorry if you felt like you needed to defend yourself!
The important thing (i think) is to monitor your health. If you get worse, you need to take appropriate action.
Even my LLMD said i was not an "especially time critical case"
Of course time is very important, but he told me of patients with rapidly deteriorating health, losing motor function, vision etc.
My case was very stubborn, but wasn't improving, or getting worse.
That said, i was still very careful to make sure there wasn't a downward trend off the meds. If there had been, or if it happens in the future, i will asses accordingly.
Posts: 339 | From Outer Space | Registered: Aug 2009
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
Thanks for sharing 3030, and I agree ABX can be toxic. I was given Levaquin and Cipro early in my illness before I was diagnosed, and it fried my brain for a year. I was practically a vegetable. Now, I know it probably was too high a pathogen load, and the die off created more problems.
7 1/2 years later I was diagnosed with Lyme, and started various abx very slowly. Many of them made me sicker, but doxyclyine actually made me feel a bit better after 10 days. Ceftin later worked even better. I'm still on abx 3 years later, but I work full time, and like to remain that way until I retire.
I think you make a valid point, and that not all Lyme experiences are the same.Everyone has a different pathogen "soup". It sounds like your rounds of abx killed off whatever was ailing you, and your immune system took over.
Congratulations! I hope you enjoy a long remission, but if symptoms do come back, try a less vigorous regimen of abx. It sounds like it was overkill in your instance.
IMO, CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
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quote:Originally posted by Al: I was symptom free until the Placebos stooped working, now I'm sick again.
If that's really true, you should maybe consider a mental health evaluation. Never under estimate the power of depression and anxiety to cause very real physical symptoms.
Posts: 339 | From Outer Space | Registered: Aug 2009
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Posting this so that when this thread is found in the archives, others can consider 3030's experience.
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I hope not. Do LLMDs EVER say enough is enough or does the ride go indefinitely?
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