posted
I regret not having started treatment soon enough, so that now treatment is the only thing that keeps me alive. But the doctors did not diagnose it in time.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
NO. But I wish I had known more about preventing candida/yeast while going thru treatment.
I took Nystatin every day and Diflucan occasionally, ate a low carb diet and took probiotics. But not ENOUGH probiotics.
That is my only regret.
But I beat the LYME and BABESIA!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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scorpiogirl
Frequent Contributor (1K+ posts)
Member # 31907
posted
Yes I regret not trying other methods first. I picked the method with the least resistant. I didn't have to courage to deviate from the well traveled path.
Why do I regret it?
1. The high cost 2. The risks of irreversible organs damage (especially my liver) 3. 18 months of this poison now I'm not even back at square one but rather at a NEGATIVE!
I will be doing detox between now until the next millennium to get rid all of all the toxins I put in my body.
-------------------- Posts: 1391 | From Lyme Land | Registered: May 2011
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
Not a bit.
I am in year four of treatment with multiple oral antibiotics, antifungals and antimalarials. Treatment is complicated and grueling, but worth it.
I can't imagine going back to the life I had pre-Lyme diagnosis.
Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
I can't say that I have any regrets. I do believe that abx have moved me along to the next level. I regret not reading Buhner's book in the very beginning. An LLMD printed out the cover and also gave me a bottle of 500mg Artemisia when I was first diagnosed. I thought "what is an herb going to do to this massive infection" I popped an Art and had the worst herx of my life. I literally felt stuff move in my brain. I swore I would never take one again which I eventually did.
The power and complexity of plants is amazing. That's all I can say. If you listened to the famous Dr. H. at the ILADs conference, you heard him say that he tried to treat Babs for 5 years in one of his patients. He threw every drug available at her. In a last ditch effort he gave her Cryptolepsis and she is now well.
Having said that. I am still on abx (I have a port in my chest) and have not switched over to herbs completely, but I beleive that the herbs are going to get me well.
Posts: 2232 | From USA | Registered: Aug 2009
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blinkie
Frequent Contributor (1K+ posts)
Member # 14470
posted
I agree with lymetoo! I don't regret the past 4 years of oral and IV meds. Anti-biotics,anti-malarial, anti-parasitics.
But, I too wish I knew more about trying to combat yeast early on. Not sure if knowing that would have changed anything though. But, I would have done other treatments in combo. Like cryptolepsis for babesia and sacc boularddi for c diff.
I'm 80% better than where I was and I'd certainly be dead if not for the treatments I've done. Even with my now, screwed up gut and even having c diff. I would do it all again. I'm still trying to get to remission but I've seen it before and I know I can get there again.
Posts: 1104 | From N.California | Registered: Jan 2008
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1. how much probio is enough? 100-200 B / day? is the friendly yeast essential or are probios enough?
2. would you please give more info on Buhner's book, like ISBN or title, etc.
Thank you so much!!
-------------------- Persistence, persistence, persistence!!! "Nothing in the world can take the place of persistence... Persistence and determination are omnipotent." attributed to Calvin Coolidge Posts: 599 | From USA | Registered: Jun 2011
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
I've only regretted not starting sooner (sick and undiagnosed or misdiagnosed for at least 23 years before Lyme diagnosis in 2008, but likely since birth 38 years ago).
I regret not being more brave with treatment, being so sick it took ages to get up to decent doses, not having enough money to treat properly for most of that time, and not knowing to take much more probiotics and do other things to keep yeast in check.
I have been using herbs all along, even before I began antibiotics. I plan to use them even more. But I also know that antibiotics are what have saved my life and gotten me those miraculous good days that keep me hoping and reaching for better.
Antibiotics gave me a recent weekend trip with my husband to Red River Gorge for our 10th wedding anniversary. Antibiotics gave me 5 miles of difficult steep-incline hiking over 2 days in utter beauty.
It was beautiful and made me cry with joy. This is the goofy old me, that I never dreamed I'd really ever see again. The old me that loved to camp and hike and be in quiet places.
I was ready to head straight back into the same lion's den of ticks that got me sick in the first place. Only this time older and wiser and covered head to toe in homemade tick repellent.
I haven't done that much or had that much fun and happiness in nearly 10 years!
I wish I could drop antibiotics and go a completely herbal and integrative approach to healing now, but I know I still have a long way to go, and the meds are what I know to help me get there.
I am still in bed on my many bad days, which are 90% of the time (versus the beginning of this trial where I was nearly dead and could barely move or put on a shirt or brush my teeth).
On a good day I'm at 50% improvement, vs the previous normal day 5% (I never used to have good days), and that's not far enough along for me to feel safe jumping off the antibiotic wagon just yet. Plus I have Bart to tackle next...
As mentioned earlier, I have yeast to contend with now, which is a big part of my pain and fatigue currently - I didn't realize I was taking less than half the recommended probiotic doses!
Sorry for the rambling, but it's been a while since I shared what's up with me and there's lots to cover.
Short answer, I don't regret, but I also know I could have used them more wisely, and I also know the value of other concurrent or complementary treatments, like herbs, NIR/near infra-red therapy (hubby made our own little NIR light box from parts ordered online) etc..
nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
quote:Originally posted by Harmony: not so hi-jack the thread but may I ask...
1. how much probio is enough? 100-200 B / day? is the friendly yeast essential or are probios enough?
2. would you please give more info on Buhner's book, like ISBN or title, etc.
Thank you so much!!
1) recommended doses of probiotics seem to be at least 100bn per day (of high-quality) at a bare minimum.
2) "Healing Lyme: Natural Healing and Prevention of Lyme Borreliosis and Its Coinfections"
Stephen Harrod Buhner, Forward by Wendy Leffel, M.D.
ISBN 0-9708696-3-0
This is a very helpful, informative, yet easy-to-read book. Even if someone decides not to use herbs at all, he explains a great deal about Lyme, and summarizes a lot of the relevant recent research (up until publication in 2005).
(If you decide to purchase from amazon.com, you can click through lymenet.org - there should be an amazon link to the left of most pages here - and they will get a small return from each purchase. - I just looked and am concerned, as there doesn't seem to be a link anymore?)
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Yikes, thanks for the reminder about ordering on Amazon through Lymenet!!! I have forgotten, and that is important! With Christmas coming up, especially.
Posts: 3771 | From around | Registered: Mar 2008
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sickmate, I think mino has helped me the most with only mild side-effects (nausea when taken with too little food on purpose to get better absorption, dizziness) - just saying it so others are not thinking mino is bad for everyone
I definiely have no regrets so far but have only been on abx since june/august, so not sure if that is "long term" - it is the longest I have ever been on anything! and I am taking three abx a day now and keep improving, so I am glad I have the drugs, finally!!!
I never took anything for long because it did not make sense - this makes sense and is helping!
-------------------- Persistence, persistence, persistence!!! "Nothing in the world can take the place of persistence... Persistence and determination are omnipotent." attributed to Calvin Coolidge Posts: 599 | From USA | Registered: Jun 2011
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posted
I have been on heavy-duty antibiotics for two years, and I am 90% improved. I have no regrets, and am very grateful we have doctors willing to buck the system and risk their licenses to get us well.
You have to be your own advocate, and make decisions that are best for you and your body - your instincts will guide you.
Posts: 964 | From san diego | Registered: Oct 2009
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I have tried stopping abx several times since starting in 2003.
I do not have a LLMD since 2005 so do what I can with what I have.
Every time I try and stop abx my health gets worse. I am not that high functioning as it is.
I have been on biaxin and amoxy when I can get it since 2008 I think.
I know I need to change abx and did get the opportunity to try mino. I will be starting soon...once I get my courage up as I really don't like those herxes.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
Kam you are self treating? How will you know what your dealing with?
-------------------- Posts: 215 | From California | Registered: Sep 2011
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I sure don't. I feel I would not be here if it was not for abx.
Even when I got tendonitis from Levaquin, I don't regret taking it. What I regret is not loading up up magnesium and vitamin C first and also taking methionine.
I regret ignoring the first signs I was in trouble and listening to the doctor who told me it was a herx. That set me back because I could not continue with the abx. I am more careful now.
I also regret not listening to my own good judgement and starting mepron when I knew I needed it. I waited 9 months for a doctor's permission and by that time I was pretty far gone.
Even though I am off abx right now, I am not closed to them. I am taking a kidney vacation. If alternative keeps me healthy, great. If not, I am back to the drugs.
I truly believe it is impossible to get well without drugs.
-------------------- 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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posted
No regrets. Just wish I would have been properly diagnosed years ago.
Posts: 671 | From Fort Myers, Florida | Registered: Jun 2009
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annxyzz
Frequent Contributor (1K+ posts)
Member # 20404
posted
Abx helped a little. But herbs and rife maade far greater difference! Artemesia annua by Herb Pharm , Grapefruit seed extract (GSE) and EMEM rife .....
ABX caused a lot of problems for me ... kidney , bladder , yeast ...
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
No regret for my daughter. At least NOW I know what abx does or doesn't do for her acute lyme. It worsened her GI problems and it didn't cure her acute lyme. Fortunately, we only used short term (5-8 weeks maximum). We stopped because she was going downwards.
Today, me too, I would go directly to herbs, they are much more friendly and in a way, more efficient if in COMBOS. Or photons.
Some herbs like andrographis, cats claw, Japanese knotweed, chewed raw garlic, cryptolepsis, artemisia annua, coptis, thyme and oregano are EXTREMELY powerful and efficient, in a way that people who never took these in the right amounts for the right pathogen, can't imagine.
And they cause less harm to the GI flora, no doubt. But herbs only work well in combos. (Well, even abx, for what I read here...)
The yeast problem is not easily solved by adding probiotics to antibiotic regimen. If it were so easy, we wouldn't be reading about the thousands of posters fighting chronic and acute yeast here.
We always think the problem is in the past: IF I HAD done that, I wouldn't be so bad today.
I do wonder if we are right thinking like that.
I somehow disagree on:
- early abx cures lyme if taken on time. Not for my daughter, who was first bitten at the age of 1, abx didn't solve her problem. She took abx from the DAY I found the attached tick.
For some, yes, I saw these people cured and never more sick, but it does NOT necessarily work for everyone. And they just take ONE abx for that, in low doses (the IDSA dosage) for 2 weeks!!!
- enough good probiotics would have saved my gut lining and prevented yeast. I also question that simple thought: you take probiotics during the least active phase of abx. OK.
But you are taking abx believing it will eliminate your bad pathogens for good, in both the active and less active phase of killing, right?
So if the abx really works, and makes you better because it kills bad pathogens for good, why will it be nice to the good bacteria and allow them to live? The more abx you take to kill the bad pathogens, the more it will kill the good ones.
It's an equation without a solution.
If you believe abx does not kill during its lowest active phase, well, it does not kill the bad pathogens at that moment then!!!
If you believe it is still killing, slowly but always, well, it is ALSO killing the good pathogens!
Besides, repopulating the gut for a few minutes / hours a day, with only 2 strains of probiotic bacteria seem far from enough to avoid yeast.
Anyway, yeast is bad but it is not as bad as lyme, so if you don't know any other options to kill borrelia, go for the abx. I would go herbs or other treatments first though.
It's like a trade.
In my case, I suffered for about 2 decades with yeast before I got bitten by a tick. When I finally fell sick with lyme and read 'it is a stubborn pathogen', well I knew exactly what that meant. My candida was a 2 decades stubborn, treatment resistant pathogen!!!!
My lyme today is gone, but I still have candida bouts here and there, only in winter or cold weather.
Anyway, I still prefer candida to lyme disease, no doubt! But that was the other reason I avoided to take abx as I didn't want to be fighting MORE candida as I have been already doing.
fortunately, my lyme treatment worked at the same time, as candida treatment, and as I took very little abx as I found herbs good enough.
Today, my candida infection is MUCH weaker than it was previous to lyme. I attribute that to heavy metal detox and electrosmog avoidance.
Just think one thing: people who get bitten by dozens of ticks a year and never fall sick. I see them all around me. The couple who lived in my house (that I rent) died next to 100 years old, and they lived on their OWN almost until the end.
It's the middle of tick land, fully in the country side, with dears and wild pigs, and these guys don't even know what are repellents. They even don't have a bank card because they don't know how to use one, they are total country side people.
I'm sure if these guys ever fell sick with lyme, the IDSA dosage would have worked for them. But they never fell sick with lyme, so they didn't need. All age people get constantly bitten by ticks and don't fall sick. They die at old age, usually of cancer or cardiovascular problems.
Why me, after a single bite, fell so sick and continue downwards despite the 2,3 week doxy dosage? Why my daughter, after 5 weeks amoxi from day 1 of tick bite, is still sick?
Every year, we would fall extremely sick after tick bites. We treat, we can get better or even healed, then again, next bite, we fall sick again.
Is only abx the miracle drug to cure people like me? Or there may be much more to be treated and abx is only one tiny part of the puzzle?
Posts: 6199 | From Brussels | Registered: Oct 2007
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posted
Hi, no regrets. misdiagnosed for years. Treated one for 3 years, stillsyptomatic but improved. then stooped got worse now back on high doses of abx and am gratsful. I take Jarrowdophillus probiotics 10 2x daily and it has prevented yeast infections ,but I have to watch the sugar intake becaues that will trigger symptoms. I get them at vitacost.com and they are inexpensive compared to health food stores. good luck!
-------------------- sprite8 Posts: 38 | From MA | Registered: Sep 2010
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posted
I don't regret long term abx but I wish initially I had stayed on them longer. I think I have always transitioned to herbs too soon and its been a very up and down cycle for a long time.
I tend to think I am 95% when I am not. When I was at my worst, barely functioning I thought I was at 80% of normal. What a joke!!!! I thought if I could walk and get myself through the day I was well over 50%.
And my first llmd thought I should be on an IV and I kept saying I didn't need it. Denial did not help me.
So be aggressive from the beginning! I do get freaked out about yeast....
-------------------- unsure445 Posts: 824 | From northeast | Registered: Jun 2008
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posted
Hi, Welcome to Lymenet, looks like you're new here. Glad you joined us.
No regrets from antibiotics. However, important to note that the antibiotics are not taken in isolation from other parts of the treatment.
By that I mean, a cleaned up Lyme diet (no sugar, no gluten, complex carbs, low glycemic fruits, veggies, avoid processed foods), herbs and supplements. Detoxing, etc.
Also, getting sleep disorders under control, addressing hormonal imbalances, adrenal fatigue, pain, and other imbalances and infections caused by the Lyme and Co.
Treating and preventing candida with nystatin or herbals.
I went undiagnosed and very sick 5 yrs. before getting the Lyme diagnosis, and beginning treatment that included all of the above. I've been on and off abx for 6 yrs, and I am much better now. However, I still have a way to go.
So, antibiotics alone are not the answer. A comprehensive approach is much better.
Best wishes.
Posts: 873 | From WA | Registered: Dec 2005
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posted
Thank you all who have responded to my post, the information is invaluable, I learned many relevant things especially when it comes to abx causing yeast problems, since I believe I have a yeast overgrowth. You can even see it on my tongue.
So my LLND put me on Diflucan (once a day) and told me to prepare my body with B12, magnesium, and Probiotics before beginning abx.
I noticed several mentions on Niastatin for yeast, is that better than Diflucan?
What herbs/supplements/diet would you recommend to replace the good flora these anti-fungals kill?
Also, what herbs/supplements/diet would you recommend to get a handle on yeast, I know it is a huge issue for me and I haven't even started on abx!
-------------------- Thanks for any and all help. Posts: 17 | From Boston, MA | Registered: Oct 2011
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you mentioned regretting not taking Mepron when your gut told you, what is it for, what symptoms were you experiencing that you felt you needed it for? I looked it up but it's very nonspecific info.
Thanks!
-------------------- Thanks for any and all help. Posts: 17 | From Boston, MA | Registered: Oct 2011
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
I think Nystatin is primarily to treat GI and/or feminine yeast, and that it is NOT effective against systemic yeast.
I'm not a doctor, and this is just my experience and collected knowledge from others, but what I understand is that if you have oral yeast (aka thrush), and/or any other symptoms associated with systemic yeast you need something other than Nystatin.
Diflucan is a systemic yeast drug, and is much stronger, and can be very hard on the liver, so is not to be taken lightly.
It is considered to be one of the last prescription lines of defense for yeast, so you need to be careful about making sure you really keep down the yeast so it doesn't become resistant.
As I understand it, frequent blood lab work should be done to check liver function when on this med for any extended length of time (more than 1-3 days).
There are many threads here and many websites about yeast (aka candida) diets. They only serve to keep the yeast from having extra food to thrive - they love sugars, and many foods and beverages can metabolize into sugars in the gut.
Hopefully someone else can add to this and answer your other questions. I hope this helps some.
Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
Why you guys don't try dr. K's suggestion of using homeopathic candida albicans nosodes, potency X5 or X6?
Google Sanum Albicansan or Pefrakehl.
I used the following for fungal or candida or mucor: Albicansan Pefrakehl Sanukehl Cand Mukokehl Mucedokehl
then for helping toxins out: Mucan, from Pekana.
It is a systemic treatment. When coupled with photons, it is very efficient if you do some heavy metal chelation together.
Good luck!
Posts: 6199 | From Brussels | Registered: Oct 2007
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Nystatin is a good preventative to take while you are on abx. I've been on it for 18 months, since day 1 of treatment. Very gentle. Prevents a yeast buildup in the gut where it all starts.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
I would like to ask a slightly different related question.
Has anyone had an infection other than Lyme and friends that did not respond to abx because of being on long term heavy duty abx? And if so, what did you your doctor do?
Posts: 1728 | From USA | Registered: May 2011
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