Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Good morning,
I suppose this question is directed toward those who have made the decision to stop therapy after feeling better, but not necessarily feeling cured.
When I first began this long haul, I was so convinced that I would be able to conquer every symptom eventually. That was before I was aware of co-infections, residual damage, dormancy vs. active infection, etc.
Now, after 4+ years of continuous treatment, I am beginning to let up on that na�ve optimism of being back to 100%.
And more realistically, perhaps, I need to consider a new end point to therapy, or a new definition to cured.
I realize that only time will tell as to whether someone improves or relapses...and that no one can accurately predict what will happen.
I also know that the standard answer to when someone should stop meds is ``At least 2 months after all symptoms have resolved.''
Personally, I just can't imagine at this point that every symptom is going to disappear with continued treatment, and I should just be thankful for the improvement, and call it a day.
I am wondering how many of you, who have been at this for years, as I have, have now come to think of cured as `better' and not necessarily `all better'?
And at what point in your treatment did you finally make that reluctant decision to try stopping therapy? To sort of give up on the whole completely cured idea and exchange it for the idea of maintenance therapy?
I question at this point, how many of my left-over symptoms are a result of years of bombardment of antibiotics...and I wonder if I should just try a few ``mop-up'' things now like CSM to see what will happen?
But...I also worry about developing ``resistance'' by stopping and starting meds.
I guess what I am asking is for a few opinions and insights on the whole issue of maintenance vs. completely cured.
Sorry, this isn't very well-worded...(one of my current lingering symptoms)
Thanks in advance anyway, Melanie
Posts: 7052 | From Colorado | Registered: Mar 2003
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Hi sweety!!!
Sounding like its getting you down. Dont let it maybe iam more stubborn but I aint givin up untill I have worked every possible coinfection and lyme over until symptoms are all gone at least treating 16months straight or 3 months past no symptoms.
I know its pretty hard heck I just had a new one my molar rear lower right _ while chewing a bite of apple decided to break I lost a third of the tooth no cavity either wierd.
Anyway hunny keep drinking plenty of water and taking suppliments and you hang in there
You remember I first got infected 1988 and didnt get treatment started till 2001 march it gets ya down but dont let dear one.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
I think "cure" is unreaslistic if it means all the microbes are gone. I think asymptomatic is a reasonable goal and I do think we can get there. I am not there yet but keep on working towards that. I think that genetics are a big part of it for most of us as well and that may be an important area to look into and then take appropriate things to bypass genetic mutations. I also am excited about IRT (www.lymefree.com) after seeing some people with good responses to it - I am starting next month.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hi mel
Thats a hard question to rangle with. Now I can not get back to anywhere near 80% like I did in 94.
I have been in 12 years of abx total treatment. The last 4/5 years very intensive IV/oral abx combos for lyme & co's.
My stomach was the real driving force that said to me whoo, this is enough. So I didn't have to make this decision on my own, just couldn't stomach the meds anymore.
I did get better but have a ways to go. I do rife & some mild herbs now only. I think since I am so chronic I have to always be on some sort of "killing/detox program"
I took 2 weeks off from rife & some herbs to see what would happen & the neuro symptoms are slowly creeping back. So I am going to start back on my "killing/detox program"... So for now, this is my only option for maintenance.
Very frustrating it is, to know when enough is enough. I would think this depends on what your "qaulity of Life" is....how many symptoms can you live with & still have a quality of life worth living.
The best I have been able to do over many years of treatment is to try & beat back the worst of them & try like heck to live with the remaining ones I can't seem to shake.
I hope you find some answers Mel Dana
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
Personally, I don't believe there is a cure for any of this.
But a key for me has been to keep the immune system in the best shape possible so it can handle the various beasts and not let them get an upper hand.
Nutrition, exercise, sleep, etc. are very important components.
Do everything you can to improve your general health and it is possible to keep the beasts at bay.
But a stressful event comes along, I'm not getting enough sleep, etc, I feel them gaining the upper hand.
My system is pretty sensitive to any change. I have had this for 9 years now and know myself pretty well.
Posts: 2275 | From NC | Registered: Oct 2000
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bettyg
Unregistered
posted
I've had chronic lyme for 37.5 years since age 21; I'm 58 now.
34 yrs. misdiagnosed with every name like the rest of you.
was on pulsed abx 20 months of biaxin & doxy; 6 months of 22 supplements which made made me MUCH WORSE & FATIGUE is still with me 7 months after getting off them all.
i'm working on my food allergies and other things now.
i've never been as sick as the last 3 years during lyme treatment! FATIGUE IS OVERWHELMING with my taking 3-5 napes daily of 1-3 hours each time.
i've never been bedridden like Kam/many others .... so thank you God for that.
I hope to reach REMISSION but know I will NEVER BE CURED!
BUT I'M HERE TO FIGHT, FIGHT, FIGHT & EDUCATE ALL ALONG THIS ROCKY DETOUR OF LIFE!
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posted
I am quite well at this point, but I continue to take herbs and supplements as maintenance. I do much less than I used to, but I still take a few things to make sure that I keep well, and kill or control whatever remaining keets there might be.
I might feel more confident to totally go off my protocol in a year or so, but not now.
Lyme Disease is so nightmarish when it is bad, and the herbs and supplements I take now seem to be pretty safe and would generally improve anyone's health, so my feeling is why not continue the program, instead of risking a relapse.
In an ideal world I would never have to think about this disease again, but I can be quite content with where I am at now. Now, I consider the illness as a factor in my life to keep under control and kill off, but it is a small factor and I go about my normal existence.
I generally am of the opinion that if you still have symptoms, you still have Lyme. I think it is rare that people have a lot of residual damage from Lyme and are cured at the same time. The symptoms are usually a sign that the disease still persists.
The only symptoms I have now are maybe a few twitchy feelings here and there. If I really wear myself out and run myself ragged doing a bunch of things, a bit of mild pain might come back, but I shake it off pretty quickly using my protocol.
In other words, I am a lot better than a lot of people whose doctors told them they were cured, but I continue to do maintenance.
Farah
Posts: 208 | From New Mexico | Registered: Dec 2005
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
MM, That MIGHT stand for Miss Melanie from somebody who cant type cept for one finger.
I was reading the 'hope to heal' notes and of interest to me,,,it said IF you have heavy metals getting better is detered. Mostly next to impossible!!
Other thing I thouhgt I saw there was the pockets of infection remaining where they can hide best...Like in dental cavity,,,OR other places blood doesnt reach well!!
Do either of these things ring any bells for YOU??? Have you covered these bases,,thouroghly???
And need I ask??? How are you doing with the cancer sticks??? I heard someplace just recent,,,,that a huge jumbo jet airliner crashing every day in OUR country alone,,,is the toll of lives it cost us each and EVERY day.
I am NOT preaching about that last part,,,just pointing out an obvious controversay. Do yourself a favor and READ Dr. B's guidelines re: same!!
I ask these questions because I CARE!!!being--just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
Melanie,
First, lets say that your inquiry is very well written. I have often thought about what you are asking but never was able to put it down concisely. Thanks for doing that.
As far as cured vs. maintenance.......... I do not think there is a cure. Really it comes down to management. Yes, bombarding the buggers with ABX is a good thing for a while, but the body cannot take that forever. Five, six, seven + years of ABX is not the way. At least not for me. I have not seen ABX cure anyone who has had this for several years.
Our bodies will not ever be the same as before the infection. ALL of the supportive therapies are necessary for us to feel almost ok some of the time. I do think metals and detox are paramount.
Antibiotics were never meant to kill an infection entirely, they kill enough for the body to get the upper hand. Because this is such a ***** of a bug we must do far more than take ABX to get the upper hand.
Resistance ..........well I have heard that Bb does not become resistant because they are so slow growing. No I don't have the citations...... just sharing what I heard. (It is hard to know what to believe.)
For me: lots of alternative supportive therapy, alternative treatments, some hope, and incredible support of friends(yes you ).
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Dear Melanie,
I hope for a cure.....however, will be content with remission.
Realistically, I may need to be on antibiotics for the rest of my life.
On when Lyme rears it's ugly head, and off when I am symptom free.
I am only nearing my one year mark for antibiotic therapy,
however, am better than I was before.
I don't doubt that I would probably be dead (or wish I was) without antibiotics.
I can't imagine four years in a row.
I have days when I want to stop. Not take another pill.
Eat and drink what I want to.
I just take a deep breath and remind myself of
Where I have been and where I want to be (health wise).
I think I can settle for a couple of remaining symptoms as long as they are not neuro.
Please know I pray for you daily.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Greetings fair lady...
We are missing a Lyme float. How I wished we could be on that river about now.
You said..
"Personally, I just can't imagine at this point that every symptom is going to disappear with continued treatment, and I should just be thankful for the improvement, and call it a day."
My thought is that damage can be done before we ever get diagnosed and/or treated. Some things can and will improve.. but a part of the problems (symptoms- residual damage) may never go away totally... depending on how long we were infected and how badly.
My hardest thing to do with Lyme was to admit I wasn't going to be cured (cause if I could have been I would have been) and the damage wasn't going to all go away.
At THAT point I made up my mind I would have to re-think my goals... adjust my surroundings to fit my disabilities... and do the best I could with what I had left.
It sounds easy while just talking about it.. but it isn't. We don't have the luxury of having all the answers and this is a trial and error thing too.
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You said... "I am wondering how many of you, who have been at this for years, as I have, have now come to think of cured as `better' and not necessarily `all better'?"
For many I do think a cure can be had.. though we don't know what the cut-off point is when trying to figure out if it is one year or less infected and we can be cured.. or two years or less.. etc.
My observations lead me to believe some folks.. even up to two years with no treatment can be symptom free for years after they get properly treated.
I also feel the more coinfections involved.. the harder to get "cured"... or to the symptom-free point. I also see folks recognise the disease within a few months of becoming infected and still they are sick years later.. even with the best treatments we have available.
I think your body tells you when enough is enough. Stopping treatment would then be a choice. I also know that re-treatment often improves a person if they were to relapse later down the line.
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You said... "And at what point in your treatment did you finally make that reluctant decision to try stopping therapy? To sort of give up on the whole completely cured idea and exchange it for the idea of maintenance therapy?"
Like many others, I never had the choice to continue or to stop therapy on my own. It was always made for me by the repeated denial by the ducks who would not treat.. no matter what.
For years my only choice was to go with the flow and take what I could get when I could get it.
Maintenance was only recently a choice when I realized that I was not going to get "cured" because of the original delay and denial of treatment and that if I weren't "cured" by now.. after years of trying... it wasn't going to happen. I also have documented damage that isn't reversible.. and no amount of treatment will change it.
When I became what I call "medicine sick".. where the meds made me worse than the diseases... I backed off and made a better plan that I could maintain on.. and adjust as needed.
When I feel I am getting so bad I NEED to take meds.. I do. Not until... and I ONLY take what I need to bring me back to my "normal crummy level".
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You said.. "I question at this point, how many of my left-over symptoms are a result of years of bombardment of antibiotics...and I wonder if I should just try a few ``mop-up'' things now like CSM to see what will happen?"
If something inside you is saying stop antibiotics.. then I'll agree with that "something" and suggest to stop also.
I also feel a body MUST take a total break from EVERYTHING before venturing off on a new protocol for anything. You've been pounding your poor little body for a long while. I think it needs a short recess. At least a month with NOTHING.
At the end of the month.. when the residual meds have cleared.. and the immune system is saying.. hey wow, look at me... then re-evaluate your situation to see what route you want to take. Then and ONLY then will you be able to get an idea of where you stand.
You might then list the worst symptoms you may have.. if any.... and address them slowly. By then you should have an idea what was caused by "medicine sick" and what was actually caused by "disease sick".
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You said.. "But...I also worry about developing ``resistance'' by stopping and starting meds."
I honestly have NEVER seen this happen. There has NEVER been anything in the literature to show it does.. and I have.. and have seen others who have restarted meds if they go down hill later on.. and the meds worked.
The ONLY time I see a problem is if someone is steadily on a specific med for X number of months in a row and it seems to "stop working" to address specific symptoms. But even then.. if the med is stopped and then started later down the road.. it works to reduce symptoms... as it did before.
Can I say antibiotic resistance will never occur with anyone? No.
But I can say I've never seen it happen and IF it happened and was possible.. I am SURE the ducks would have proven it can happen with their Lyme studies.. as bogus as they might be... but they can't say it because it hasn't happened in MY opinion.
I take doxy. I've used it on/off for years. It has never failed to take away current symptoms and bring me back amongst the living.
If I were resistant.. or my infections were resistant to the doxy.. it would have no effect.
My GUESS is that if you stopped everything for a month.. you would feel better than you do now.
posted
I am also one who does'nt believe in residual dammage.
I was told many times that I was cured only to relapse within a month or two.
Only to find out that my infections were active again or never stopped being active.
I have somewhat resigned myself to the fact that I have yet to use the right ABX or combo or cocktail of medicine that will cure me.
So, until then, I will remain a person with a resistant, persistant infection.
Getting better with abx treatments in between times off abx when I gradually slide back downhill from feeling better to feeling worse.
Openended abx treatment is the only way for me to at least have some good periods of time when my symptoms are reduced to a managable level.
I believe without research this is all I can hope for.
I do believe someday, perhaps too late for me, but on time for others, there will be a cure found and a preventative vaccine discovered and manufactured.
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Yup, I'm with TC on the never seeing abx resistance with Bb- in fact, I have seen the opposite many times including in myself- where abx that didn't work when someone was very very sick DID work once the person got better (IV vs. orals).
I am so grateful to be as well as I am- and grateful if I have to stay on abx my whole life. I think it would have been harder if I hadn't been so sick. So I get grateful for being so sick.
The standard answer I know is NOt two months w/o symptoms- but 3!!! That is what Doc J uses and my old LLMD too!!!
I know a woman VERY sick for 9 years who is in full remission and has been for over 6 years now. In my experience Iv Rocephin, Im BIcillin, oral Bactrim, oral high dose Amoxi and oral Tindamax have put chronics into full remission-
In my experience people who stick with abx get better than people who don't- AND the ones who get into full remission tend to be treated for everything-
Lyme- Babs- Ehr/Ana- Bart- Viral infections-
That is what I see!!!
I would wonder if you have been treated for everything and if not, ask for it!!! These are tissue sequestering organisms and there are so many blood negatives!!!
Either way, in remission or maintenance, I hope you enjoy life and are grateful for what you have- we are all so lucky to be alive- an acquaintance of mine died yesterday of an aneurysm, age 34, 3 little girls who are friends of my girls- what a tragedy and what a wonderful reminder of how precious life is- and how even Lymed life is precious, precious, precious!! Best wishes, Sincerely, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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ByronSBell 2007
Unregistered
posted
Remission is very possible, you may need to try new treatments to get the last of them!
Try doing saunas and hot tub's. Get your body temp up to 104 degrees or around there several times a week, borrleia can't stand heat! they die at 106 F but have a very hard time surviving at temps below that. Rife machines could also help. ABX can get you very far and into remission but to completly get rid of them, others things need to be done!
Also check all of your blood work to make sure everthing is normal, things like all of your vitamins, calcium, magnesium, iron, regular lab work,ect. something could be off... also check all of your hormones through 24 hour urinalysis
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
I hope your okay your pm is full.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
I just started treatment only 2 months ago, but i have had lyme for over 12 years.
So, I am curious. How long have you guys had lyme, and how long have you been treating?
I saw Dana said she had been treating her lyme for 12 years... but how long has she had it? I really hope treatment starts working for her soon. And for all of us. We deserve it.
Knowing that would help put things into perspective. I am worried becasue I do not know how long I will be doing this untill i see improvement, having lyme for 12 years.
So, how long has everyone had lyme, and what improvements have ytou seen, and how long have you been treating?
I think that you post a very interesting question. No one wants to be on ABX longer than needed so looking to end is probably on everyone's mind.
That said, have you tried any of Buhner's Protocol in support of your ABX treatment? How about on it's own. He presents a pretty compelling case for using suppliments/herbs to both treat the disease and support your own body as it heals.
Thoughts?
BT
Posts: 299 | From New Hampshire | Registered: Jul 2007
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Ha!
What Tincup said! Both times. (only teasing, Sweety)
Melanie, I was going to say it just not as well as TC. Try and remember what worked on what and that should give an idea what maintanence ABX would be best.
Please contact me when you can, ok? I have something I need/want to discuss with you. (Actually several things.)
hmm... having problems deciding if that word should be should/want/need... whatever... you get the idea.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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quote:Originally posted by Melanie Reber: Any experienced long-term maintenance suggestions?
Hi dearest Melanie!!! I'm fast approaching my 3 yr anniversary of being off antibiotics. This, for the newbies, is after 4 straight years of abx.
I am maintaining by rifing and taking Xango. I don't ever want to be without either of those....especially the mangosteen.
I pray that I can continue as I am and live life as best I can. I basically have no pain as long as I drink the mangosteen and have plenty of energy and very little brain fog.
I think that's about as normal as I'm going to get!
I do hope you can find something to alleviate your symptoms. I think beginning with Rife would be a great start!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96220 | From Texas | Registered: Feb 2001
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Thank you each so much for your continuous help!
To answer your questions...
I began exhibiting random symptoms back around 1982-3, so I have been dealing with this for sometime. I was finally diagnosed in 2003, and have been on continuous ABX since then, with very few breaks.
Current symptoms include massive brain fog, creaky joints, sore neck, extreme fatigue, some sleep sweats, asthma/cough, intermittent headaches, some peripheral neuropathy and muscle twitching.
Sooo, I think I am still dealing with Lyme and possibly Babs too.
And no, my fingers are not broken...just my brain. Sorry.
For some reason, this has been the most difficult `phase' for me as far as trying to stay positive and come to some sort of terms with. Each one of you is so very appreciated.
Posts: 7052 | From Colorado | Registered: Mar 2003
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caat
Frequent Contributor (1K+ posts)
Member # 2321
posted
I got rid of the lyme and then I think the bart or whatever it was. Have been in remission for about 9 months- no abx. except when I went hiking once in tick underbrush by mistake.
I've possibly been re-exposed to bartonella or whatever it is lately. I'm thinking of going to the local vet and asking what it is that the cats have here- the most common stuff. I live between 2 cat ladies... pretty disgusting.
I do beleive I got rid of lyme itself entirely. Rocephin/flagyl at the same time.
Posts: 1436 | From Humboldt county ca usa | Registered: Mar 2002
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Sending good wishes your way, DL
Posts: 925 | From California | Registered: Sep 2004
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JimBoB
Unregistered
posted
As many of you know, I was infected in 1999, and didn't get any treatment for 5 months. Then it was just 24 days of Cipro.
IT worked for about 8 or 9 months, then I sloooowly started relapsing. I didn't realize it was Lyme, as my duck said I was cured with the more than 21 days of abx.
It got so bad by fall of 2005, I thought for sure I wouldn't see 2006. I went to my duck and he wouldn't give me any more abx, said it couldn't be Lyme as I was "cured" with the Cipro.
Oh, by the way, this was the same duck that gave me Cipro a few years earlier for Prostatitis, and helped to destroy my colon.
Anyway, I found Buhner's book Healing Lyme and ordered herbs and started taking them on Nov. 25, 2005. Then in late December I started taking Tetracyline for 28 days, which killed my stomach. Then took 7 days off the abx. Then took doxycyline for 24 days, (tried for 28 days, but couldn't, because of the pain), and quit it because of my stomach problems.
I kept taking herbs all this time, as it did not bother my stomach at all. But didn't cure it either.
I discovered C-Salts from Nutrition Wholesale, and that "cured" my stomach in a few weeks. I still take it, as Vitamin C is VERY important when fighting Lyme. I take from 3,000 to 4,000 mg a day.
I kept on the herbs at maximum dosage for five and one half months, and now have been on a maintenance dose for over a year. I have been on herbs for a total time now of 21 months as of today. I tried cutting back more on them and some of the symptoms came back again, so brought them up to my current levels.
I am at about 80% of what I used to be, before Lyme, on my "bad" days, and from 90 to 95% on my "good" days. I have the feeling this is all I can hope for, and will probably have to take them the rest of my life.
But, after hearing what so many of you have put up with for so many years, I think I am doing pretty good, overall.
I also have age against me, as I am 66 now. Young people usually fare better when on a good protocol.
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Originally posted by skyler:
"I saw Dana said she had been treating her lyme for 12 years... but how long has she had it? I really hope treatment starts working for her soon. And for all of us. We deserve it." -----------------------------------------------------------------------
Skyler ~ Got sick in 86 right out of college. I had untreated lyme for 7 years before I got my first IV in 94. I have had lyme now a total of 21 years. But 9 of those 21 years I was in 80% remmission on orals after my IV treatment in 94.
Sweet Melanie please hang in there
There is hope. But I don't think it's realistic to ever be able to use the word cured with chronic lyme... But remmission can sometimes feel alot like cured at times
I have been off abx for 1 & 1/2 years now & just doing rife & supps. I am much better than I was pre crash or re-infection 4/5 years ago.
Am happy to say , I was able to go on a 3 hour photo shoot today in 97 degree heat. No way could I have done this pre-treatment 4/5 years ago. Actually would not have been able to figure out how to use the camera or stand & walk that long either.
Still have some bad lyme days and a ways to go but am stable now & have been having some really good days.
I believe in my case the rife is holding back the lyme & the co's for now...knock on wood. So rife is my maintance.
I do herx from it, sometimes as bad as from the abx but it seems to pass's more quickly.
But if my stomach could handle the abx I would go back on them for maintance in a heart beat. They have saved my life so many times over the years & I tend to trust them more.
I was on doxy for 9 years after my first IV and it held me at 80%. But back in 94 I didn't have any co-infections that I was aware of.
I do hope you can find something that helps hold back your lyme & co's Mel.
Don't know if any of my ramlings have helped at all but I do hope so.
I admire you & only wish you the best so you can be happy
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hi Mel
some passing thoughts ~Are you going to retreat the babs? I have been rifing new babs frequencys & having, for me anyway classic babs herxs. Not sure how far I can get without nailing the co's. I think my recent good days are because of 2 things: The recent addition of hitting my babs & treatment for yeast.
I did 3 months on sporanox this spring. Chances where very good, that after 4/5 years of such intensive abx tretments my flora is low & yeast is high. It did some good . You may want to ask your doc about this. Yeast can mimic so many lyme symptoms.
Hugs Dana
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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adamm
Unregistered
posted
After how long do you suppose these infections become incurable? Obviously there are those lucky enough to knock them out during their earliest stages with appropriate treatment who CAN avoid all future complications.I will have had TBI's for 5 months when I start treatment-- what do you figure the best I can hope for is?
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hardynaka
Frequent Contributor (1K+ posts)
Member # 8099
posted
Hi, I did a two day hiking tour in the mountains! I really feel coming back again to life (after recent re-infection)!
I'm on very few herbs these last days, never really been on abx for very long, but I don't consider "being in herbs = being in remission". Not at all. I basically only used herbs in this new reinfection too! Some are really potent.
I guess for this last phase, or maintenance phase, a combination of herbs can work well. You don't get the nasty candida with them (I never got!).
You could take immune system boosters, immune modulators, some killers sometimes, and a few cleansers. That's what I'm already doing.
I've been recently re-infected, but I feel I got back again to the stage I was before reinfection: fighting basically lyme cysts and a left over from fungi in my blood.
Life is pretty much like it was before lyme, except that I need to take few herbs. I don't think I got worse than before lyme in the sense that I don't see new symptoms (except for chills that still may come while 'herxing'). My GI tract works now better than before lyme.
As for allergies, I'm doing the EFT tapping with good results. I feel some of my allergies appeared due to lyme, but many allergies will remain even after the load of borrelia/ coinfections fall.
EFT is free to do and if it doesn't work, well, at least you didn't lose money!
Brain fog for me was strongly a babs symptom. Babs can be hiding for a while (and when it does, we feel great!!), but when it comes back, we feel in hell again. It does look like you still have babs. To treat babs in the last phases is very difficult, I find, because of this 'hiding' game!
You need to treat this nasty babs to get on feeling good again! I think I finally nailed mine again (I had done that after my first tick bite), but it's still early to say (still knocking on wood!).
Good luck! Selma
Posts: 1086 | From Switzerland | Registered: Oct 2005
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northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
Hardy,
I have read all your herbal posts, and am intrigued.
What special herbs are you using/have used for babesia?
Thank you, North.
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
Hi Melanie. Have you ever done a cyst-buster such as Tinidazole in combination with another antibiotic?
Posts: 4681 | Registered: Oct 2000
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Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
I also believe that I will never get 100% back. This is my second time coming off antibiotics. The first time I think was too fast and I relapsed. This time my LLMD is going gradual and I'm doing extremely well. I'm hopeful that I can get off them and stay off them. I can live with being 95%, so much better than where I was.
-------------------- Mathias Posts: 1242 | From New Jersey | Registered: Feb 2004
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hardynaka
Frequent Contributor (1K+ posts)
Member # 8099
posted
Northstar, I just sent you a PM!
Posts: 1086 | From Switzerland | Registered: Oct 2005
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
Melanie
Your friends here all feel the heaviness of your words and want to help make the worry and pain go away. You always offer such comfort, friendship and help to all with your suggestions and questions.
I know that fatigue and cognitive problems with night sweats all can point to babs but I wonder if you have been treated adequately for bart.
I went to the notebook from the New Haven symposium and it suggests when to suspect bart:
"Ongoing symptoms despite prior courses of abx (fatigue, headache, resistant arthritis) especially, resistant encephalopathy and cognitive difficulties, new onset of seizure disorder, visual loss, neuro retinitis, lymphadenopathy, GI symptoms
(I know the Cowden protocol treats all infections except babs and many are having success with both these herbs and also Buhner's herbs.)
My one son is on the rifampin protocol for bart (7 months now) He recently started to develop night sweats. We figure it is either herxing or allowing babs to present. Who knows......I do know my friend sent me info that night sweats can also be associated with bart.
We all hate these infection mysteries, don't we.
I think Dana can be our inspiration.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Dear friends,
Thank you so much for your help. I so appreciate all the suggestions, experiences and words of encouragement.
Forgive me for not replying as well as I should- the brain fog is just so extreme, it is difficult for me to compose adequate responses, so I end up deleting most of what I write.
Anyway...I think the real issue is trying to figure out what diseases are still hanging on. They all overlap so much and share so many symptoms.
I have undergone treatment for just about everything now, Bart, Babs and Lyme. The med list is pretty thorough and extensive:
Doxycycline Amoxicillin Biaxin Nystatin liquid IV Rocephin Actigall IV Cleocin Diflucan IV Zithromax Questran Keflex Flagyl Minocycline Plaquenil Septra DS IV Levaquin Biaxin XL Ketek Mepron Zithromax- oral Omnicef IM Bicillin LA
I think after all is said and done...I made the most progress on IVs and IM. Unfortunately, neither is an option presently.
Posts: 7052 | From Colorado | Registered: Mar 2003
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adamm
Unregistered
posted
Just a question for the folks who dont think they'll ever fully recover: after how long did you begin treatment? Do you think there's any chance I'll be able to if I begin treatment 5 months after contracting my illness?
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Hello Adam,
It is so difficult to predict how long any of us will need continued treatment- we are all just so different in so many ways.
Having said that, I think you are fortunate that you were diagnosed 5 months into this, and I also think you have a very good chance for recovery.
Stay on your meds as long as possible.
My best, Melanie
Posts: 7052 | From Colorado | Registered: Mar 2003
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Hi there Miss Mel, my first real friend from Lymenet - the Angel who guided me to my LLMD and to whom I will forever be grateful....
How about the term 'Peaceful Coexistence'? This is how I choose to look at it. Cured - no, but do I have my life back - YES. In my humble non-medical opinion, I think once you hit the coinfections, you can learn to live with BB and keep it in check once you rebuild your immune system and mineral levels.
I'm approaching my 3 year anniversary off abx. I still do a full regimen of supplements, weekly IM Magnesium, and TOA Free Cat's Claw. I started the Cat's Claw while on abx, and unlike others hear, was 'weaned' off abx very very slowly.
I have remaining issues but I guess have found the appropriate regimen to keep them in check (and honestly don't consider them issues any more - I just take my rxs and supps).
For joint inflammation - Zyflamend.
For painful muscles - Flexeril.
The tinnitus that I've had for more than a decade - well, nothing has touched that.
For a pulse that's always in the upper 90's despite regular exercise - a Beta Blocker.
And a full boat of vitamins and an immune booster.
And of course, Theralac and occasional Diflucan treatment.
Perhaps now that you're abx free, you can take the opportunity to do a yeast blast. Maybe that will clear the fuzz out a bit?
If your body and brain says take a break, then go with that use the time to detox a bit.
So sorry to hear of your troubles and wishing the path to good health!
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
Hi Ms. Melanie. Here's my experience, and for "you", below, read "the hubby and I". Except where I literally mean you, of course.
- You can maintain with Bb, limpingly, on oral abx for long periods of time. Like you, the hubby has had the best results for Bb with IV, and second best with IM meds. I've done about as well on orals as on IV, once I knocked the load down. I'm getting - slowly -- stronger and healthier, although I still have significant problems with fatigue and brainfog.
- You can't maintain with babesia once it really gets going. Babs seems to be an all-or-nothing proposition when it manifests itself, and it's quite crippling mentally and physically.
The hubby's sx after babs relapse were depression, anxiety, sweats, pain, headache, weakness, breathlessness, brainfog. A second round of Mepron/zith did nothing to help. One round of riamet did nothing. Primaquine/chloroquine helped briefly but there was a fairly quick relapse.
Quinine/Clindamycin for 6 months as a pulsed tx may have worked, will let you know in several months.
-viruses can cause severe problems with weakness and brain fog. You can maintain well with them using valtrex/olive leaf extract, with various times off for the liver to recover.
- bartonella, erlichia and mycoplasma all seem to have resolved with treatment, so I don't know about maintaining with them.
- there's probably other stuff going on that there are no tests for -- for this reason, I plan to always be treating my TBD. I blame a contiuing Bb infecton and this "other stuff" for my continued major fatigue and brain farts, although I do seem much improved compared to my worst times, before I got rid of babs and bart. Am about to embark on the Cowden protocol and will post on that down the line.
- one of my Lymie friends has a huge problem detoxing, and this is causing her tremendous problems in treatment. The detox issue makes it very difficult to take abx OR herbal remedies long term, and results in long-lasting brain fog, weakness, adrenal and thyroid insufficiency, liver and kidney disfunction, depression, pain, and bloating.
She's done ALL the traditional detox stuff and is very careful with her diet. She recently saw an ND who specializes in detox pathways and genetic profile and is lyme literate, so she may be turning a corner. I'll post if the approach she uses works out.
Best of luck, Melanie. You've been a trooper and you certainly deserve to be well an have a wonderful happily ever after. (Like that makes a difference to Boris and Muriel! What boorish guests inhabit your bod. I say, Aroint thee, buggers!)
-------------------- ********************* RECIDITE, PLEBES! Gero rem imperialem! (Stand aside plebians! I am on imperial business.)
minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
Adam -- you have an excellent chance of recovery, if you have someone knowledgeable and thorough guiding your treatment.
Many of us old timers have had the disease for over 10 years -- 20 years in the case of myself and the hubby-- and either went undiagnosed or received the wrong treatment.
So be warned but us, but don't be discouraged. I personally know people who have gotten, if not completely well, well enough to have a very happy, productive, fulfilling life. I've heard from people who feel they have recovered completely (may be true, but in the interests of full disclosure I don't know them well enough to vouch for that). Hang in there.
-------------------- ********************* RECIDITE, PLEBES! Gero rem imperialem! (Stand aside plebians! I am on imperial business.)
ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
My LLMD (you know who that is) is a big believer in maintenance therapies and has told me outright that he has had several go completely off meds only to relapse badly 1 to 2 years later.
I have been off for about 6 months, and am doing so-so. He tells me if I work at keeping the beasts at bay, they will stay there.
Here is what he has recommended:
Week 1 MWF: Minocin 100 mg twice a day Septra DS, 2 twice a day Ketek 400 mg, 2 at night
Week 2: Same as above, but add Flagyl 500 mg, twice a day Thurs and Fri only
Weeks 3 and 4: off everything
Run this 2 cycles (months), with 2 weeks on, 2 weeks off.
Then do the protocol of week 2 every 1st week of the month, taking antibiotics basically 1 week of each month.
So I will be starting this Monday. Seems pretty easy and I have no idea if I will have a herx or not. But since I have been off treatment for awhile, probably will.
I personally believe that there is no cure. Based on how he treats, I think the doc feels that way as well.
Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
I couldn't possibly thank each one of you enough...
This morning, I feel absolutely horrible, so I will try to re-read each of your replies a bit later once my head stops pounding and spinning.
Much love, Melanie
Posts: 7052 | From Colorado | Registered: Mar 2003
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janet thomas
Frequent Contributor (1K+ posts)
Member # 7122
posted
I don't expect to ever be cured but I sure do plan on remission-to be mainained by my doug coil rife machine. I took abx for almost 3 years and would get some symptom control but relapsed when I stopped because of yeast. So now I'm only rifing and improving. You just can't give up.
-------------------- I am not a doctor and this is not medical advice but only my personal experience and opinion. Posts: 2001 | From NJ | Registered: Mar 2005
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Dave6002
Frequent Contributor (1K+ posts)
Member # 9064
posted
So after some time of consistent abx of Lyme therapy, pulsing of abx probably is the right way to go.
In my case, I didn't feel any benefit of consistent abx over pulsing abx
Posts: 1078 | From Fairland | Registered: Apr 2006
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