I just wanted to post a little update to say that I have been off antibiotics for a week and started herbs today.
I feel much "cleaner" off antibiotics, it is very refreshing and I don't fully know how do describe wht it is like to have my system clear of that stuff after so long, but it feels nice.
I'm much more optimistic about the herbs after all your comments. Ill post an update once I start to see what they are doing for me...
This is a great conversation thread!
I take grapefruit seed extract (aka GSE) and have for quite a while ... my nonLLMD but very wise doc recommended it.
I ran out of the GSE for a few days a while back, and I could really tell the difference! It has quite a good effect in general.
I've heard of grapefruit seed extract before. Someone told me it is supposed to help prevent Lyme cysts or break them up, I'm not sure which.
I recently started on Banderol and Samento (Cat's Claw) but since I started them the same time as Tindamax, it's hard to know how much of my recent benefit is from which product.
That is really interesting what you say about citrus in compost. My dad and I were having a conversation about antibiotics, and being a treasure trove of miscellaneous information, he told me that the first guy to mass produce penicillin tried numerous different mediums, and finally found success with orange peels. When I read your post, I understood why. He needed something that wouldn't rot before he could harvest the penecillin mold.
It sounds like you have a good doctor. Is switching to IV meds a possibility? I have heard some people with Lyme can't quite get to a full cure without an IV for a while. I'm avoiding an IV by doing Bicillin LA shots. My husband gives them to me at home every 3 days and I've learned that if I ice the area really good first, it doesn't hurt. Then, I put a hot pack on it for 30-45 minutes and I don't get sore. But a friend of mine who lives alone had an IV put in 4 months ago and she's really happy with it. It doesn't bother her and her only remaining symptom is reduced stamina and some fatigue. She has BBB (as she calls it - Borrelia, Bartonella, & Babesia).
I also have Bartonella. I asked for something other than Rifampin after 3 months as my lingering stomach pain just wouldn't go away. As soon as I switched to Levaquin, the stomach pain almost completely went away and no more heartburn.
I also noticed I haven't had a single anxiety day since the Levaquin. My 5 yr old daughter got her worst skinned elbow (and side) ever yesterday and I actually remained calm as she screamed and cried. Poor kid.
Hnag in there! I'm only 4 months into this and I feel frustrated that it's too slow. I have to remember that this takes time and every body is different.
I use herbal remedies whenever I can, but don't hesitate to go for a pharmaceutical treatment if there is not an effective herbal available or it isn't getting the job done.
I'll post a web address for the most effective holistic "bug fighter" I've ever come across. t is supposed to be antibacterial, antivirus, and antifungal. I don't know why we've never had a problem with it seeming like it killed of needed bacteria, but it never seems to do that, just kill off what is ailing us. I've used this for many things, but the most impressive to me was that it worked to save an entire litter of 3 week old puppies from the Parvo Virus. The vet was so impressed that he ordered some for himself and has had great success with it against Parvo himself.
I am almost finished with my Herbalist certification and we used to be commercial farmers who were just short of being able to be 'certified organic' but we never quite made the transition because we were willing to go 'non-organic' before letting our production suffer. The rule is no chemicals on your crop or your FIELD for 7 years. About every 5 years we would end up using chemicals for something big. I just mention this to give you a better idea of the degree of earth muffin I am :)
One thing that gives me confidence that this ALC liquid should be as effective as they claim is the grapefruit seed extract. We do a lot of composting especially with what we clean out of our rabbit barn and if someone accidentally puts citrus in the compost, there is a big area surrounding the citrus peels/seeds that won't allow the bacteria to break down any material. So that is a good indicator to me that it really does kill a wide spectrum of bacteria. We had an incident when I made several batches of marmalade and my son put all of the left over peel, membrane, and seeds into the composter at an early stage of composting that batch of compost never broke down all the way after giving it about 3x the normal amount of time. .
It doesn't taste good and if you decide to try it, mixing it with orange juice or cranberry juice is the best way to get it down. :)
http://www.wisdomoftheagesllc.com/index.php?option=com_content&view=article&id=18&Itemid=60
Thanks for the data on meds. There is definitely no one-size-fits-all in this situation ... partly because of the mix of co-infections and also because the mysteries of Lyme are still being unraveled.
I was on azithromycin and metronidazole (=Zithromax and Flagyl) for Lyme, after I was on other things for babesia. It was a few years ago, and I know things continue to develop, and each doc has a preferred course of action.
Ah, Lyme! Never a dull moment. :)
Hi,
and thanks everyone for your encouragement and useful info. I really appreciate your wisdom. I'm going to follow up on the book suggestions.
The therapy I have been on is (daily doses):
Minocycline 200mg
rifampicin 300mg
hydroxochloroquine sulphate (plaquenil) 200mg (to answer Rico's Q about cysts, apparently this deals with them)
trimethoprim and sulfametoxazol (bactrim or cotrim) 960mg
I was on this for almost a year, then for 3 months (Dec to Feb) switched OFF bactrim and onto Azithromycin 600mg (3 days a week) - along with all the other stuff above. This was because my chlamydia pneumonia had flared up terribly - I have a heart condition and the effect it has on my heart is dangerous.
The azithro combination got the chlam pneumonia under control but allowed my lyme, and particularly bartonella, to flare up/relapse.
I asked the doc about metronidazole, as when I have happened to have short courses of that in the past it has made me feel really good, and it is highly effective against chlam pn, but he was against it. He said it is too heavy on the liver and best used as an absolute last resort, generally for emergency situations: He said this was discussed at the last Ilads conference and this attitude is the way things are going now.
Anyway, I went back on the original regime I listed, in March this year.
The first time I took it, I got a whopping herx reaction from the bactrim and afterwards felt a LOT better. Second time I felt nothing and I wonder if the bacteria had developed resistance to it. I asked the doc and he said yes, that is possible.
I meant to ask, but forgot ... what meds have you been on, in what combinations, and oral or IV, and for how long each?
Sorry, that's a lot of data, but Rico's comment above made me think of this.
I totally understand your perspective. I was skeptical of supplements, especially when I saw the prices on the first batch recommended to me. I decided to stick with the ones that really seem to help, and I am now a believer that natural supplements can definitely make a difference.
Last time I talked to my PA, she mentioned that if I ever come in and I was not better than the last appointment, then we need to look for something else, like yeast, mold, heavy metals, or virus loads to see if something is interfering with my immune system. Antibiotics work WITH the immune system, and if the immune system is not functioning well, antibiotics can only do so much. She also said that if I plateaued, it was probably time to rotate antibiotics.
In the book "Cure Unknown", Pamela Weintraub also describes a novel approach to treating her stubborn Lyme infection. She said Dr. Burrascano told her that he did this himself when he couldn't shake his own infection. (First time I'd heard that he had it himself.) I seem to recall it involved going off abx and waiting until the infecton got bad again, and then hitting it hard with high dose Ceftin. She had to go through 3 cycles of this, and then she was cured. It's near the end of the book, but she doesn't give any details about this approach. I've never even heard of it outside the book.
There's a study by Eva Sapi that shows that in vitro, some medications (like docycycline) actually trigger the bacteria to form cysts to hide. Then, when antibiotics are stopped, the spirochetes emerge from the cysts and go back to multiplying. Have you tried a cyst buster like Flagyl or Tindamax?
I really noticed a difference on Tindamax. I started it 2 1/2 weeks ago, and the first week I had lots of bouts of sleepiness and brain fog and irritability (brain herxes?). But last week, I had the best week I have had in many months, certainly the best since treatment started. I no longer spend most of the day in my recliner or bed.
I think of herbs as Mother Nature's pharmacy, and over time have become more open to the whole concept. My LLMD was an all-antibiotics-all-the-time kind of doc, and it worked for to me -- to a point.
I had babesia (like malaria) for which antibiotics seem to work well. Lyme is a trickier little beast, and while antibiotics work or seem to work, I have wondered if treatment of any kind really eradicates Lyme or just drives it so far underground that it FEELS like a cure -- which is fine, as long as it keeps feeling that way. Kind of like locking up murderers instead of executing them.
Modern drugs are the same idea as herbs, just derived in a different way, and I have come over the years to have more and more respect for herbal approaches. Big Pharma meds tend to be narrowly targeted to kill, kill, kill, while herbal meds have so many biochemical aspects to them that are still being understood, and so have potentially helpful effects far beyond the killing zone, such as immune support.
This is a long-winded way of saying: sure, why not try herbs? A chemical is a chemical, whether a drug or an herb.
There is a master herbalist named Stephen Buhner who has written several books, including 'Herbal Antibiotics', a short book, rather clearly written, and a good place to get comfy with the idea of herbs. You can also search on line for his name online. Another of his books is 'Healing Lyme', available on Amazon. 59 reviews give it 4.5 stars out of 5.0, so either it's a useful book or ALL his family members wrote in to support it.
I got messed up after a long but successful antibiotic treatment for babesia and Lyme, because I got a massive systemic yeast (=fungal) infection that I seem to be genetically susceptible to. My Lyme doc said he had never seen that in anyone, but I suspect there are others who just don't have the symptoms I did. Partly I think it was because my Lyme doc prescribes S. boulardii probiotic, and that is yeast-based -- and if I have, as I appear to have, a familial genetic tendency to yeasts/fungal infections, then it was not a surprise that the 'good yeast' took over and my immune system couldn't battle it.
Eventually I got over that, but it also caused me to find another doc to help me get well from the yeast, and she put me on a bunch of herbal supplements to help rebuild my immune system and also fight whatever bacteria might still be lingering in my body.
I take a bunch of supplement even now, and it is really good stuff. I was never much on a lot of vitamins etc, but I'm a believer now -- it just means having a doc who understands how to select the right ones and oversee the treatment, as with any treatment.
It's Mother Nature's own pharmacy, and she's a wise old gal. This doesn't mean antibiotics are not useful going forward, but I would not leave half the meds off the table because they don't come from Big Pharma. I'm a converted believer, and understand your concerns. In your situation, I would try the herbs as another weapon in your arsenal. I did, and I'm glad.
Let us know what you decide, what herbs you're taking, and how it goes, okay? Take care --
My doctor has spoken to me about it. I am at the start of my treatments and starting with abx but she said she has had many very ill patients that have done the herbs with great success. I guess like everything else with Lyme, some have luck and some don't. It's worth a try if you are at a stand still.
Some of the most effective herbs are the simplest ones. For me, there was not enough power, with the exception of the first die off I accidently triggered. I went the opposite of your situation, started with herbals, then I've since got to ABX. The simple and inexpensive herbs that triggered the die off are plantain, barberry or goldenseal (barberry is much less expensive), olive leave and extra virgin olive oil, and copper. I've been packing these things over 40 years, so they are firmly entrenched. The above herbs also contain antifungals, which after ABX treatment, you could have too much of.