My wife was recently diagnosed with chronic Lyme so we're starting on the journey with which many of you are already familiar.
Based on my reading, I have a basic understanding of what to expect from long term antibiotic treatment. But with all the information available online it's hard to separate what's common from what is possible yet unlikely.
That said, can you please post about your experience with treatment no matter how insignificant? Even if it's just to say your treatment progressed without many difficulties.
Any insight is helpful but my wife and I are especially interested in understanding the following:
1) How much pain does the treatment tend to introduce? 2) How likely is it that candida will be a problem during and after treatment? 3) After treatment, what can we expect in the way of long-term/permanent side effects? 4) We've heard long-term antibiotic treatment is like firebombing your system (akin to chemo). Is that a legitimate analogy? 5) After everything you've gone through in treatment, what would you do differently if you could do it over again?
Thank you very much for your insight!
Happy to answer any questions if it's helpful to have additional context.
Posts: 1 | From Austin | Registered: May 2014
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
The answers you will get will be all over the map. Because people differ in their response to treatment, their symptoms, their outcomes, and their feelings about allopathic vs alternative medicine. Sometimes the people who have the most to say do not represent the majority.
This is a self selected group of people, not a random sample. So you will still have to pick and choose what seems logical to your case and situation.
Good luck in your lyme journey. Hope your wife will be able to get the treatment she needs and improve. If she has had it a long time, you should be prepared for treatment to be lengthy.
Would be a good idea for you to view the film "Under Our Skin" which I have heard is on youtube and netflix, but I cannot vouch for this. Can also buy a copy of the DVD.
The book "Cure Unknown" by Weintraub is excellent too. These are more about the circumstances around lyme diagnosis and treatment than about treatment itself. But those circumstances greatly affect a patient's experience..
[ 05-04-2014, 04:15 PM: Message edited by: Robin123 ]
Posts: 2888 | From USA | Registered: Mar 2004
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Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Welcome to Lymenet!
I remember pondering the idea of starting Buhner herbs or doing abx. I wanted to do the herbs, but my lifetime conditioning of western medicine won out so I started on abx.
Unfortunately, after a few weeks of abx, my gut was destroyed, and has never been the same since. This is something my doc never warned me about. He put me on 30 billion of probiotics and it was no where near enough to protect my gut.
If I were your wife, I would take no less than 100 billion (probiotics). She might want to start working up slowly now. Also, I actually ended up needing 400-450 billion (many people do). We are all different, so people take whatever keeps their gut happy and the yeast beast away.
That said, the abx and other meds hit my lyme and co infections well, but the cost was great (destroyed my gut). Your reference to chemo might be a good metaphor here.
When abx destroy the gut, food choices drop. Mine dropped exponentially to just a few foods or I would get yeast. We cannot heal with yeast, so I HAD to change my diet (no choice).
So I not only felt like crap, I also lost the ability to eat normal food (a huge loss, IMO). I wish I had tried herbs and alternative routes prior to ever even considering abx.
Had I known then what I know now I never would have tried abx. The gut is so very important to the human body.
Alternative stuff freaked me out when I first got on this board. Now I know it is quite valuable as it has truly helped me along with herbs. I know people who went the alternative route and never touched abx. They are happy, doing well and can eat foods that I can't.
There is a good book about another person's journey through lyme (The Tick Slayer). The author (Fields) started and stopped abx realizing they were not for her, and searched for alternative stuff to get well. Her book opened my mind to try other things and I'm so glad I did.
There is so much more to lyme than just abx. It is a multi systemic compilation of co infections, bacteria, heavy metals, viruses, microbes, mineral deficiencies, along with detoxing issues (genetic), parasites and more.
Parasites are a huge part of lyme, yet most docs miss them. I am so glad I started treating for them as I'm getting better. You might want to visit the PARASITE WARRIOR'S SUPPORT THREAD. http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/122300
Fortunately, Lymenet is loaded with other people's experiences trying things, so you and your wife have vast material to read here at your fingertips. It takes time to absorb it all, but so worth it, IMO. My best advice is to keep an open mind about all of it.
.................................................
Breaking up the text for easier reading for many here - Robin
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
1) How much pain does the treatment tend to introduce? I didn't get body pain from treatment. Sometimes an intense headache, but I'd been suffering from those before treatment.
2) How likely is it that candida will be a problem during and after treatment? If you modify your diet (re: Burrascano guidelines) and take quality and quantity probiotics, you might be just fine.
3) After treatment, what can we expect in the way of long-term/permanent side effects? No- one can answer that question for you, individual. I was infected and untreated for so many years, hard to discern the difference. But I'm better, very glad I was able to treat.
4) We've heard long-term antibiotic treatment is like firebombing your system (akin to chemo). Is that a legitimate analogy? Never been through chemo, but, think I'd rather do Lyme treatment. Don't set your mind to negative/ horrible. Learn about detox.
5) After everything you've gone through in treatment, what would you do differently if you could do it over again? I wish it would have been cheaper $$ wise, but I'm satisfied- I switched LLMD's partway through- it was scary, but correct- no regrets.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
1) How much pain does the treatment tend to introduce?
Not much. Rarely, maybe the third day when I had a herxheimer reaction and it still wasn't horrible. Bad PMS was way worse.
The antibiotics got rid of the horrendous headache that I had for months and joint pain.
If you have to do intramuscular shots, they can be painful at the injection site, however, I had my fastest progress with these so they've been worth it.
2) How likely is it that candida will be a problem during and after treatment?
I'd take nystatin or diflucan along with antibiotics to prevent the problem. I haven't had much of an issue with candida, but I've taken stuff to prevent it all along. I cut down on sugar and carbs, but nothing too extreme like you'll read from others. No yeast or candida infections for me.
I also take probiotics away from antibiotics.
IM shots and IV bypass the stomach so less likely to result in gut problems.
3) After treatment, what can we expect in the way of long-term/permanent side effects?
The first time I treated, I was a little more tired than before treatment. I'm in treatment again because of reinfection.
4) We've heard long-term antibiotic treatment is like firebombing your system (akin to chemo). Is that a legitimate analogy?
I'd much rather do Lyme treatment. I felt BETTER when I got on the right combo of several meds. My immune system finally had a break because the antibiotics were taking over killing off stuff that was too strong for it.
I'm also allergic to several antibiotics and that's when I get a bad reaction.
I have friends who went through chemo. They were very tired like me. Fatigue and weakness were really the only thing I had in common with what they were going through, but I had that with or without treatment.
They had such a long recovery time after chemo. Nothing like that for me the first time I treated Lyme.
5) After everything you've gone through in treatment, what would you do differently if you could do it over again?
I've treated twice (the first time with antibiotics and the second time starting with alternative/herbals, then going back to antibiotics).
Personally, I wouldn't waste my time on alternative treatments as the main way to get rid of Lyme. Trying to do the "gentle" route of supporting my immune system with herbals/energy medicine, just made the infections grow out of control and caused the chronic mess I'm in now.
The only thing that's holding me together is taking antibiotics.
On that note, you'll hear a lot about detox. Supplements and alternative treatments can support you while taking the antibiotics. You must take some kind of binder to capture all the die off that's going to happen from the infection. I take Toxin Absorbmax.
Also, getting tested for MTHFR genes is helpful. It's a blood test. Some people can't detox correctly and it's good to know this so you can take the right vitamins.
Posts: 2839 | From California | Registered: Jul 2012
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posted
What works for one does not necessarily work for another and how people respond is also individual.
I would also recommend you read the top Lyme-literate doctor's book entitled, "Why Can't I Get Better?" It is an excellent source of information as is Lymenet.
posted
About treatment - there's three categories: kill/deter the organisms, detox and fortify the body. A large number of options for all three.
1) Yep, we're all different. I put myself on oral clindamycin and my pain disappeared in a week's yime. No suffering then! It was a month later I started to herx - ie the die-off then - so I dropped back in dosage. You'll see how you do and change your dosages. Best to start low to see how you tolerate a treatment.
2) Depends also on whether you're starting with any candida. Just take really good probiotics and to be safe, eat as much of a noncandida diet as you can.
3) If it's chronic, it's going to take awhile to treat. A lot of us are in maintenance, meaning we do what we need to do to maintain our health. It's really a full body sytsem thing we're dealing here.
4) Not in my case - I did fine on antibiotics for five years, and then it no longer worked. There are plenty of treatment options besides antibiotics.
5) Find out whether I could detox genetically. I went through some pretty difficult reactions before I found out I'm a difficult detoxer.
The 23andme site has a saliva spit test that will show whether we can detox ok or not and where the stuck enzyme pathways are - that analysis can get done by geneticgenie.org. Then a doctor familiar with boosting the metabolic pathways will know what to do with us.
Posts: 13116 | From San Francisco | Registered: May 2006
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
My experience is similar to Robin and Judie. I'm a neuro lyme mimicing MS and/or ALS, not rheumatic lyme. I have/had a boatload of coinfections, viral and bacterial
1) only had improvement in pain since starting treatment. Occasionally day 2-day 3 on my pulse ON with IV rocephin, I herx bad and get bone pain and neuro issues.
But will take these any day over the awful neuro lyme symptoms I had before starting treatment.
If I keep up on detox, they are mild.
2) candida is/has not been an issue for me. I ate mostly paleo/low carb before starting treatment. It is very important to eat a diet high in fibrous, leafy green, nutritionally dense vegetables, variety of protein sources, and lower sugar fruits (like berries), and naturally fermented foods like kefir, yogurt, homemage fermented veggies/sauerkraut, while on antibiotics.
Living on the wild side for me is having a slice of Ezekiel bread, or eating a small yam, or eating bean based meal.
Sometimes I will eat a half cup of rice. Rice is a big yeast former, so I don't do it too often.
I also take 400 billion-500 billion cfu's of probiotics daily. (I mix the brands I use for better cfu strain variety)
3) I feel SO MUCH BETTER on antibiotics than off. Antibiotics have/are saving my life.
Everyone is different, some feel awful on abx, feel better on herbs or rife, or mHBOT etc.
For me, I would be dead by now without antibiotics.
Doesn't mean I will stay on them forever, because I don't want to, but I will stay on them until they stop being effective, or until I find something else that works in place of.
4) best advice I can give is to get some safe detox routines in your life. Detoxing will keep any herxes milder.
Also put the mindset in your mind that you are doing this to help your body, and it will help you, and you will start to feel better.
And read read read. Ask questions. the more you learn about every modality and treatment, the better.
Get used to saying, "No thank you. I would love to, but I need my rest. When I am better, let's ______" to invites. At first you will feel guilty, but not overtaxing your body or mind will help your body to heal.
And avoid cardio for now. (in dr b's guidelines)
Is your mostly rheumatic lyme, or neurolyme? How many wrond diagnoses did you have before the lyme dx?
I had 16. Saw 32 docs since being real sick. Tried treating all the other diagnosis, of course didn't work.
Anyways, as you can see I still have some neuro issues, but they are peeling away.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
Had the bull's-eye rash in 2009, some joint aches I thought old age and tinnitis, then extreme muscle aches and neuropathy symptoms hit in 2013.
Tested positive for Bb and later for mycoplasma and some yeast.
I researched and started taking Serrapeptase(Dr's Best) for biofilms, grapefruit seed extract(Nutramedix) to pop cysts, turmeric (Source Naturals) and resveratrol (NOW brand from knotweed) for inflammation and antibacterial, Kyolic garlic (formula 100) for inflammation & antibacterial, antifungal, antiviral.
Then chlorella (Source Naturals) for detox.
These stopped all my symptoms except for slight neck/back and occasional joint aches mild, and left hand neuropathy (tingling, some numbness) and the tinnitis and light sensitivity.
No antibiotics. This worked fine for a few months, then I started getting brain fog, word retrieval problems, and some balance problems.
Not very tolerant of andrographis herb, but this helped my brain a bit. Chewing/eating some apple seeds daily (5-12) helped my brain the most, and eating amygdalin foods helped some.
I tried samento & banderol for a month. Very mild, I could not tell that it helped at all, but I didn't have bad symptoms either. Still taking my daily supplements throughout this whole time.
I tried artemisinin for a few weeks, which is supposed to kill several forms of Bb and also supposed to help treat babesia (you have to take a week off after 3, for liver). This definitely helped my brain some.
Now I am finally, after 8 months, seeing an LLMD and taking minocycline and tinidazole (same as tindamax), pulsing them somewhat. I am very sensitive to antibiotics and this has been working for me. My left hand neuropathy has been getting better ( the positive change started this week(4th week)and nothing touched it before this.
Of course I take probiotics.
I tried taking the 2 abx together twice a day for 4 days and could not continue. Now I take mino about every other day and tindy every 2 or 3 (it stays 48-72 hours in the system.) And eat apple seeds and Red Zinger tea on the off abx days.
So far so good.
I found herbals can keep away all symptoms except brain/neuro. These are the scariest to me. But I cannot take heavy sustained antibiotics. Time will tell if this modified pulsing mino/tindy protocol is curative or just temporary improvement.
Here is good German treatment protocol info for Bb (translated). Lyme is rampant in Germany.
posted
1) How much pain does the treatment tend to introduce? -----> My joints were a wee bit more achy at times, but for the most part, this was not an issue for me. For my best friend, whose lyme is worse than mine, it is. But, one thing you will learn EVERYONE responds to treatment differently.
2) How likely is it that candida will be a problem during and after treatment?
-----> For me, this is my biggest issue. If I were to do it all over again, I would go very low carb, no sugar... I only went gluten free and cut down on all processed foods and desserts, but it was not enough. I took nystain and took approximately 300 Billion probiotics for the 9 months I was on abx. It was not enough... I am worried that candida will haunt me for a long time.
3) After treatment, what can we expect in the way of long-term/permanent side effects?
-----> Only candida
4) We've heard long-term antibiotic treatment is like firebombing your system (akin to chemo). Is that a legitimate analogy?
-----> I've never had cancer so I cannot truly say. Some people compare long term abx/lyme treatment to chemo, but while it might be somewhat similar, I personally think chemo drugs are much more dangerous and toxic to the body than abx.
5) After everything you've gone through in treatment, what would you do differently if you could do it over again?
I would rest more...definitely get more sleep. Exercise according to Dr B's protocol. And, watch my diet more closely. Eat only 1 serving of fruit per day and cut down/out all refined sugar, carbs and processed foods. Eat only a whole foods diet - meat, seafood, veggies, some cheese (mostly a paleo type diet), gluten/grain free
Good luck to your wife. Remember that everyone is different. I was terrified of herxing and my herxs were never that bad. I had some herxing, but it was tolerable. Make sure you detox - lemon water, alka seltzer gold, epsom salt baths, etc.
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