posted
Well, I've been on ABX since mid July. (400mg doxy per day and 500 levoquin) I have slowly improved. Kinda like 2 steps forward and 1 step back.
MY last bad day was 3 weeks ago, but it was much less severe than it used to be and I think I brought it on by drinking fresh veggie juice on an empty stomach and then taking my doxy.
I just finished my second month of levoquin and I'm not refilling it.
Why? Because I want to rebuild my gut flora and kick this Lyme to the curb with:
massive probiotics, (200 billion a day)
a low sugar diet,
gentle exercise
lots of rest
PRAYER
supplements like chlorella, he shou wu adya clarity cordyceps a ton of Dr. B's recommended vitamins and minerals
And I'm hoping to transition from gut destroying to gut building BY CHRISTMAS.
Wish me luck cuz I'm taking a leap of faith here!
Posts: 42 | From Virginia | Registered: Aug 2011
| IP: Logged |
posted
Good!! And you may want even higher CFU's for a while. Next to NO sugar would be great if you can do it.
prayer is awesome!!
Best wishes!!
PS... How long were you sick?? And .. you should be symptom FREE for 2 months before quitting abx. Did you have bart??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I would do all of that while still continuing antibiotics. You have not been on them for very long at all. Did you have a recent infection, or have you been ill for a long time?
Posts: 4035 | From Mississippi | Registered: Jul 2008
| IP: Logged |
steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
This works for some, and doesn�t for others. Personally, I like your plan, and I do think you need to take a break at times.
I hope you�re one of the lucky ones, and never need to go back on ABX.
I wish you all the luck in the world!!!
PS. Watch out for the SUGAR, it's a killer!
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
| IP: Logged |
scorpiogirl
Frequent Contributor (1K+ posts)
Member # 31907
posted
Sounds awesome!!
Try it and see... you can always adjust things as you go. There is no law that said you can't go back on antibiotics if you need them down the road!
I wish you the best of luck! Please keep us posted!!
God Bless you!
-------------------- Posts: 1391 | From Lyme Land | Registered: May 2011
| IP: Logged |
blinkie
Frequent Contributor (1K+ posts)
Member # 14470
posted
butyrate is supposed to build back the lining of the gut.
Posts: 1104 | From N.California | Registered: Jan 2008
| IP: Logged |
posted
My doctor refuses to put me on anything but the "natural abx," which is the Nutramedix drops, plus tons of supplements and vitamins, plus my good diet. I discussed the possibility with her during my last appointment (I was losing my patience), and she said absolutely not, due to the damage she has witnessed in those who came to her after being on months and years of abx.
When I started, I wanted to start with naturals and only switch to abx if absolutely necessary, not start on abx and have to switch to naturals due to damage done.
I have complete and total faith in my doctor and my protocol, so I wish you all the luck in the world.
I know my plan is not a popular one, but I feel very good about it, and when she explained it all to me, it made perfect sense.
Gotta have faith...and hope!
-------------------- Best Wishes,
Hope
"Hope is a good thing, maybe the best of things, and no good thing ever dies."
~~The Shawshank Redemption~~ Posts: 234 | From Minnesota | Registered: Dec 2010
| IP: Logged |
I started getting sick last fall (they would be major incidents) and then nothing for a few months. Perfectly healthy in between.
Then this spring, it started getting worse as it got warmer and I was having Neurally Mediated Hyportension and basically Bart symptoms once a month starting in May.
No one knew WHAT was wrong with me! I had it pegged to Lyme by July and started ABX treatment. I started improving within 6 weeks. I know it hasn't been long, but I am ready to get well and I am determined to rebuild my immune system!
Posts: 42 | From Virginia | Registered: Aug 2011
| IP: Logged |
Well, I don't feel so great. I can definitely "feel" the Lyme trying to multiply whereas before, I didn't. Also a bit of depression today and i am not the sad type...
I am tempted to go out and refill the levoquin, but I think I'll give it a week. My system isn't going to kick the Lyme over night...
Right now, (starting today) I'm taking 800 billion probiotics a day in 8 0z water treated with Adya Clarity. I'm considering trying to do an Adya Clarity supershot, but I'm worried that I'll really feel like crap after that.
Also got a scrip for VSL #3 which I'll fill today.
I'll keep updating on my experiment.
Posts: 42 | From Virginia | Registered: Aug 2011
| IP: Logged |
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Try some antiparasitic herbs or pharma antiparasitics if you want to take a break from abx. Parasites/worms can be a co-infection of Lyme. Dr.K. treats parasites FIRST and Lyme SECOND.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
| IP: Logged |
posted
I'll check out the L-glutamine. Thanks for the suggestion. I have 2 baskets. one for empty stomach supplements and one for full stomach. It's ridiculous! Makes my pill poppin grandma look like an ascetic monk!
Posts: 42 | From Virginia | Registered: Aug 2011
| IP: Logged |
lymeboy
Unregistered
posted
I broke from antibiotics and did a cleanse after a year. I had been doing really good and I backslid into oblivion after the cleanse. I think part of it was that I released a lot of toxins, and stirred the bugs up considerably.
posted
Healthy living, unfortunately, does not cure lyme. It is a good thing to do, but most people need abx too. I hope your doctor will reconsider if it looks like that plan isn't working.
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
-------------------- 3 months Doxy 8 months of Tetra 7 months of Biaxin/Plaq. 4 months Doxy/Biaxin/Plaq. 5 months Biaxin/Plaq. Back on Doxy/Biax/Plaq On the road to recovery. Trying to make people Lyme Aware....... Posts: 289 | From R.I. | Registered: Jun 2009
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Lou posted: "Healthy living, unfortunately, does not cure lyme."
DITTO. Of course the very best health habits are required but are simply not enough, alone.
I would not stop treatment yet, either. You can talk to your doctor about all this and what changes can be made. You can change doctors but it's vital to have an ILADS-educated LL doctor who has experience and lots of study in how these infections work - and what support your body needs.
If you stop, wait and then restart some anti-infective Rx, it may not work again - ever. The infection can create a resistance. A good LL doctor can tell you which infection and which abx, when stopped, may not work again. Different Rx may be needed.
To think one can rebuild the immune system before the infections are properly dealt with can cause treatment failure. Lyme (and some other infections) DISABLE THE IMMUNE SYSTEM. They are sneaky beyond belief.
It's vital to address such infections head on AND - at the same time - support G.I., immune, adrenal, nervous systems and organs like the liver, kidneys, etc.
Tick-borne infections are incredibly "brilliant" and can outwit us if we don't have the very best of professional advice every step of the way.
Please do not stop treating infections (and that include parasites). But also DO support your body so that it can all work better.
Now, there may be other ways to address infection. You might consider RIFE machine, etc.
There are some complementary protocols that might be considered.
It's dangerous to think "oh, if I can only get my body stronger . . ." That just cannot happen unless the infections (including parasites but also the heavy metal issue, etc.) are being properly addressed.
Please talk to experts who have successfully worked with thousands of others with tick-borne infections. Their front line education is worth a mint.
You might also consider seeing an ILADS-educated LL ND (naturopathic doctor).
Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- JessJoy,
about L-glutamine (you mentioned considering that).
yes, it can really help the stomach but it's not for anyone with anxiety, startles or seizures. Just in case any of those bother you, it's important to know that L-glutamine can make those worse - however, there are still ways to work with that.
And some find they do well with reasonable doses. Just start with a low dose in the evening time, after you are settling in your home.
You really need just a small amount in water on an empty stomach. Maybe start with 1/4 tsp. in 1/2 cup water and see how that goes to calm an inflamed gut. If you feel jittery at all, cut back or switch to other methods.
In any case, it's good to balance it with magnesium (not necessary at the same time, but spread out throughout the day). As L-glutamine can cause neuro-excitability, magnesium can calm that.
Holy Basil (Tulsi) is just one herb that can also balance out any kind excitatory sensation.
Also for the gut, although I think L-glutamine works the best if tolerated, other things that help: DGL, marshmallow root, slippery elm, etc.
A gluten-free, dairy-free, soy-free, corn-free diet. Going gluten-free is the very best help. But, I assume your doctor's already told you that and you may already be gluten-free. If not, it's amazing how much better the gut of a lyme patient does without it.
How to find an ILADS-educated LL ND (naturopathic doctor), Acupuncturist, Holistic LLMD, etc.
RIFE machines and many other avenues are discussed here, too.
Articles and books covering complementary methods are listed, so you can get an idea of the differences in support measures and those that address the infections, heavy metals, parasites, etc.
But, as this is so involved, it really points to finding a LL doctor who has the experience and skill set you need. There are some ways to individualize your care while also sticking to the rule of addressing the underlying causes.
It might be easier to start with the Buhner book & the RIFE book. Bionic 880 is another plan to check out.
It may be worth noting that not one single LL ND goes with "just getting the body stronger." They all address the causes, along with body support.
Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
6 weeks ago, I got off the levoquin and thought I was going to die after a few days. Almost went to Walmart at 3 a.m. a couple times to get a refill. But I kept telling myself, "give your body a chance to adjust and pick up the slack on its own". After a week, I was ok.
Then I got all crazy and decided to cut my doxy in half as well. BAD MOVE. Had an ear infection with 6 hours of cutting the dose. Went right back on the 400 per day dose.
Found out that Adya Clarity is pure poison masquerading as a health supplement. It's actually battery acid processed further with sulfuric acid. I was on it for a month! I sent it back and got my money back! Luckily no detectable damage!
I've had a rough month with barely a let up in symptoms. 3 weeks ago, the Lyme moved to my head and presented as a migraine and serious neck pain that extended to the shoulder blades. My MIL gave me a massage (she's a therapist) and I was amazed at the difference. In fact, since then, all my symptoms seem concentrated in my head with headaches as my warning bell.
Then, very unexpectedly, my stomach began rejecting the doxy. I would just get a tight cramp that never went away and always felt worse after my doxy. It got so bad, I said, "to hell with it, I'm not taking the doxy til this resolves." It took 36 hours. When I took another dose of doxy it came right back.
At the same time, I felt FOR THE FIRST TIME, MY BODY FIGHT THE LYME ON ITS OWN. Before, I'd get a bad body buzzing feeling that basically was a warning to get in bed because it was going to be bad. But now, I feel my immune system actually kick in and fight if I just sit and rest for a few minutes! It's a great feeling!
I complained to my wonderful doc (not an LLMD, but very open minded and flexible) about the stomach issue and she wants me to get off doxy for a week (I've been on it for 5 months) and see how I feel. I was terrified! But I'm doing it and I'm ok! In the past, I had symptoms within 4 hours if I skipped a dose of doxy... hOpe it doesn't all blow up in my face before Thanksgiving! For the first time, I really feel like I'm turning a corner. I think the acupuncture really contributed. Got a doc appt next week so we'll see the next step in the plan. Bicilin shots for a month?? Or just the herbs??
Supplements I felt a noticable difference on:
* Vitamin c (the pure powder up to 6000 mg per day) * probiotics (up to 500 billion per day from custom probiotics. I use the 6 strain) * artemesia tincture (when the antibiotics just weren't cutting it, I'd take a double does of this along with vit c and probiotics... * massage * acupuncture * raw milk * avoiding sugar (CAN"T EMPHASIZE ENOUGH!!)
ALSO VERY HELPFUL BUT NOT AS MUCH AS THE ABOVE: * chromium * co Q10 * alpha linoic acid * vit b complex * vit D * potassium * milk thistle tincture * kidney tonic herbal tincture * motherwort tincture (for the sad times!)
WASTE OF MONEY:
* Adya Clarity * Prescription Assist soil based probiotics (never felt a difference on these) * cleansing enzymes by RAw Food World * Tranfer factor Lyme (sometime I felt a slight herx after I took this but that's about it) * zeolyte * chlorella tablets (YUCK! never did anything noticable)
STILL GOING TO TRY: * banderol * samento (cat's claw) * siberian ginseng (1:1 dilution) * andrographis * burbur
Posts: 42 | From Virginia | Registered: Aug 2011
| IP: Logged |
Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
Youhou!! Congrats to you! I once put my lyme in remission with fasting. Difficult to believe, I know, but it happened!
Instead of all the herbs you are going to try, I would suggest slowly to start on Japanese Knotweed, which is HERB NUMBER 1 Buhner recommends today, after 6 years his Healing Lyme has been used by many people.
Siberian ginseng is great, I feel.
Andrographis is not for everyone, too strong and only effective when you have full blown symptoms, less effective as you go on with treatment.
Another wonderful and soft herb is stephania tetandra. I loved it too.
I used Buhners herbs for more than 2 whole years. Cats claw (whole herb is my preference) is also wonderful, but you need to take this forever... I took more than 2 whole years of it, almost no stop.
Anyway, wishing you good continuation. I was someone that refused to be treated with abx for longer than 2 months as I saw no long term benefit.
My gut feeling was literally right as I did reach remission a couple of times until next bite or next relapse. Now I'm on remission for 2.5 years, going to reach the 3rd if I pass this winter!
Winter time is the worst for lyme, in my experience. Either lyme symptoms get worse, or candida or a person with full remission can get a relapse in winter.
Artemisia annua tincture... I see you are taking killers!! This is very powerful, or the whole herb in decoctions.
I loved artemisia annua too, much better tolerated than artemisinin and hits borrelia too, not only babesia.
It feels you react well with herbs! The only problem is that both herbs and abx are long term treatments. What short cut my treatment, after 3.5 years on herbs, was photon therapy with homeopathy.
With herbs, one can get to remission, but for me, it was short lived (about 4-5 months maximum). Even buhner says that, after finishing lyme symptoms, he recommends at least one whole year on herbal supplementation to avoid relapses.
It was photon treatment that put my lyme disease dormant for long.
Anyway, I find shifting to herbs nicer and finer for the gut flora and general well being.
Good luck!!
Posts: 6199 | From Brussels | Registered: Oct 2007
| IP: Logged |
posted
THanks, Brussels! I will def check into photon therapy. Yes, I forgot to add Japanese knotweed! So many to remember. I had read about Stephania and I'm glad to hear your personal endorsement! Also for got to mention PRAYER!!!
You know, for me, my Lyme is more active in the warm months. The cold brings relief...
So glad to hear a kindred spirit's opinion on the ABX.THank you!
Posts: 42 | From Virginia | Registered: Aug 2011
| IP: Logged |
Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
Japanese knotweed, start very very slow. I only put one finger (1cm) of bark in the tea pot, boiled it for a while (perhaps 10 minutes if my memory is good) in a liter of water (4 cups), and drank that during a couple of days. Just few sips of that yellow decoction made something in my brain, I think because it crosses the BB barrier so well, that I swear, I felt like being drugged.
So start slow. It is very powerful, in a different way than andrographis...
Stephania for me was wonderful, very easy to take.
cats claw, like artemisia annua, made me herx the whole time. Artemisia started to upset my stomach after a while and did not work long term as cats claw. Cats claw, I feel it's the herb people take for ages. Most people, if my memory is good, prefer whole herb. It is stronger than Samento, in my opinion.
For coinfections, you need to add other Chinese herbs, like houttunya, frozen garlic, forsythia, etc... Take a look at some of Zhang's products. You can buy herbs separate in bulk for next to nothing (very unexpensive).
Buhner' protocol does not address coinfections well, except for cryptolepsis... that I never took. He swears by it today.
Funny you got more active lyme in summer.
Today I took a classic homeopathic substance, and was knocked down. I suppose these can also help deeply, a bit like a prayer does.
Another plant I love, is cardamon powder. It deals with lyme cysts (according to my energetic tests), clears lymph (I can see that happening in my body as swelling disappears minutes after cardamon tea), and it deals with spores or candida. Not a single treatment for any of these problems, but it is a supportive treatment, I find.
And another that helped me with coinfections was gervao, from rain tree. That is the one that I remember, plus pau d'arco, of course, but gervao was gentler than pure killers like pau d'arco, andrographis... as it does cleansing or balancing together!!
Good luck, really! I never regretted not to have taken abx. I had loads at home, just in case, but rarely used them. I find herbs MUCH easier to take, much better for the GI tract, but you need to find the good combinations!
Posts: 6199 | From Brussels | Registered: Oct 2007
| IP: Logged |
posted
Brussels , this is so informative and very encouraging to read ... thx so much
for sharing so definitively ... I have been searching for alternatives
to ABX myself and after a year on herbals and other alternatives ,
went back on ABX short term ( I hope ) because I felt the need ...
but want to get back to natural therapies alone again , just as
soon as I am able... your words here have given me hope again
that I too can find the right combo for me and kick this darn
disease out the door ...
many thanks !
-------------------- "Gratitude is not only the greatest of virtues , but the parent of all others "....Cicero Posts: 254 | From new jersey | Registered: Jul 2009
| IP: Logged |
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Interesting thread. How are you doing JessJoy?
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
| IP: Logged |
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Ah, now I remember. This is what she did and it worked!
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
Printer-friendly view of this topic