MariaA
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posted
Well, I just started antibiotics for h. pylorii (ulcer) for a month, thus ending 5 months of herbal-only treatment. I wanted to give an update while it's fresh in my memory:
history: -6 months oral antibiotics, too many side effects (including vomiting on doxycycline, and later exhaustion while on zithromax, which of course is my primary Lyme symptom as well as a side effect of azithromycin)
-took Buhner Protocol herbs for two months midway through the antibiotic treatment, had a great increase in the 'rate of improvement' during that time, stopped after 2 months when zithromax side effects kicked in and I didn't know what was causing them.
-stopped antibiotics around Thanksgiving to see if exhaustion was due to side effects or Lyme- felt great once the side effects went away
-After a month off of treatment, I relapsed very badly. 'Run over by a truck' feeling, pain I hadn't felt in years, tiredness, sleeping all the time, sore eyes, no brainfog though!
-started Buhner Protocol herbs, no antibiotics
-felt somewhat better within a week
-tested high in mercury and low CD-57, negative on suspected bartonella coinfection which I haven't treated other than with boneset and red root as per Buhner
-felt dramatically better- almost 'normal' again- very few symptoms, very functional, no brainfog, etc- within 2 weeks on herbs and assorted detox "stuff"
-started mercury chelation using DMSA and immediately all my symptoms came back, slept for four days, etc. LLMD said it was a sign of methylation pathway not working right, told me to stop (actually called me at home at 11 at night to respond to an email about this and tell me what to do!), and prescribed regular B-12 shots which I'm still on.
-So, for the past 5 months I've been on the Buhner herbs and have had some ups and downs, but it's been a slow steady improvement.
-no side effects to the herbs other than having to take a lot of pills which I dislike. I think I could do this for years if I had to and if it seems safe, it's very affordable (I buy powders and encapsulate them). I'll try lower doses soon to see if I can maintain my levels of health without the handfuls of pills.
-i'm on the core protocol plus sarsaparilla and stephania and eleuthero. Ive tried other stuff shorter-term and was doing a lot of detox (chlorella, bentonite clay, fiber, Solaray Detox formula sodium alginate) for a while but am not taking much of this now.
-It feels very effective in the long run and I have long periods where I feel symptom-free, but it felt unstable at the beginning as I'd feel worse if I missed a day or two or overdid something else.
what set off relapses/bad days: I moved during this time, and had to deal with at least three years' worth of things I'd been putting off while sick. Moving me is like moving a junkyard, by the way.
That was a massive amount of stress and hard work!
The 'downs' mainly seem to come only when I got too busy with work and strongly "overdid it" (such as welding toxic painted metal with poor ventilation for several days in a row) and a second time when I was fighting off a stomach bug/virus that my boyfriend seems to have brought back from a Third World trip. The 'downs' lasted as long as two weeks at a time, then I'd feel better for anywhere between two weeks to four weeks, then I'd overdo it again.
-I've been fighting yeast the entire time- my LLMD says it's part of my immune system being out of wack, probably due to mercury. I was on diflucan several times, with very noticable improvement in my 'Lyme' symptoms (energy mostly). I don't know if it's Lyme or just candida at this point but it seems to be playing a MAJOR role in how I feel. I have been avoiding sugar for the past 8 months but it doesn't seem to have helped.
-after 25 days of diflucan I still get yeast infections , that seems totally insane. Herbal anti-yeast stuff doesn't seem to do very much.
-I finally started a very low-carb diet- few grains or bread or potatoes- and that seems to have made the biggest difference in my symptoms- in the beginning of the low-carb thing I used to feel Lyme symptoms (tiredness, pain, minor case of a 'dizzy' feeling) coming around almost immediately when I 'lapsed', but now I can eat a little bit of rice, corn, or other grain without experiencing any problems at all.
I'm about three weeks into the low-carb diet, which is what the book The Yeast Connection suggests as a test of whether similar symptoms are caused by candida. I'm going to stay on this diet indefinitely!
It's not all that difficult to do, since I odn't have to be super-religious about ALL carbs apparently, and I'm not allergic to anything. Sugar/dessert/fruit cravings are totally gone after trying to avoid it for several months.
-Incidentally I"m not snacking as much because there's more effort required to make a vegetable or meat, and that means I've lost weight (not a problem in my case) even though I"m eating fattier food because of eating meat/eggs more often.
Which herbs specifically from the Buhner protocol are you on? And how much of each?
Thanks,
- Andrew
Posts: 443 | From The Wild West | Registered: Jan 2002
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MariaA
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posted
I just edited to add that- core protocol of polygonum cuspidatum, andrographis, and cats' claw, with the 'expanded protocol' additions of stephania and sarsaparilla. Standard dosages he recommends- 4 #00 capsules four times a day, now down to three times a day due to laziness.
I also added in the detox info above.
Mark
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MariaA
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Member # 9128
posted
My LLMD thinks I'm not going to really kick this till I address the mercury, which I'll do after the h. pylorii treatment.
I was also taking a lot of MSM for the sulfur content - because GiGi posted at this forum that your body preferentially binds up sulfur rather than mercury, or something along those lines. My LLMD checked out her info and said that Dietrich Klinghardt, whose writings she was quoting, is usually right about matters of chelation.
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Jill E.
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posted
Maria,
Thank you for the update. Your posts about the herbal protocol have always been very enlightening. I have Buhner's book and want to start it at some point - but slowly, I'm sensitive.
How are you going to do metals chelation if you have a methylation problem? I'm very interested in this because my LLMD and I think I might be one of those people who can't detox normally, although I have not had any of the tests.
I know that Dr. Amy Yasko has a whole protocol for Autism - also used by some CFS and Lyme patients - particularly focusing on genetic methylation defects. I only have an overview knowledge of it - her protocol really takes a lot of studying which I haven't had time to do.
In the meantime, I'm staying away from metals removal - I had a disasterous experience years ago.
Take care, Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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MariaA
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posted
you know, I don't know much about metals chelation yet. My doc is going by experience with his patients and the much longer experience of one of his colleagues (who's a naturopath- not my LLMD but the naturopath who practices in the same office). They seem to be taking some of their info from other sources (like Klinghardt and the Doctors Data folks who market a DMPS challenge test) as well. He's not having me remove amalgams as his colleage hasn't found it to always be necessary.
He's having me do 'stuff' to support glutathione production- like taking undenatured whey. The B12 shots are also for the detox for chelation. I'm going to use small doses of DMSA when I try this next. I bought a DMSA that also contains NAC, which he said was fine. He cautioned against using ALA which Buhner supports- because of the fact that it can supposedly move mercury into brain/nervous system tissue. I'd felt bad when taking ALA on my own. the LLMD says that I can do that later on in the process. I think the anti-ALA warning is from the Doctors Data people, I just haven't read anything they've written about chelation. Please post anything you learn about this, if you keep researching it.
-------------------- Symptom Free!!! Thank you all!!!!
MariaA
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posted
whoa, wait a minute- I think I completely mis-spoke about methylation.
I think he said it was the glutatione production that's a problem, not methylation, and that he based this on how I reacted to DMPS and DMSA. I'm sorry I misremembered, I don't really understand these metabolic/liver issues very well at all.
-------------------- Symptom Free!!! Thank you all!!!!
posted
One more question - when do you (or most people) take the herbs? Before, during, after, between meals? His book doesn't state what is best.
- Andrew
Posts: 443 | From The Wild West | Registered: Jan 2002
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Cass A
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posted
As for taking herbs, unless otherwise instructed, it's best to take them with food.
Best,
Cass A
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
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MariaA
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posted
I take them whenever. They don't really irritate the stomach as far as I know, though of course with Lyme you never quite know- there's always a patient whose illness falls outside all normal 'standards'.
I've gotten sick of swallowing them with water (I get this 'pills crawling back up my throat' feeling if I have too many to take at once) so I try to take them while eating something.
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Jill E.
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posted
Thanks, Maria, for the additional information. It sounds like you may be seeing LLMDs in the same practice where one of my closest friends goes - she sees the naturopath.
When I first became symptomatic with Lyme but did not know what it was, I saw a very good nutritionist. I had been self-medicating with NAC, ALA and other things for the Lyme neuropathy, because I had been reading of those nutrients being used for various types of neuropathy.
The nutritionist, who was very knowledgeable about heavy metals removal, got very worried when he saw I was taking NAC at fairly high doses.
He showed me an article by the VP of Doctor's Data, all about how NAC can mobilize metals, particularly mercury, out of the tissues and into the brain. To a lesser degree, ALA could, too, but NAC was the major concern.
I have since read there is some disagreement about this theory. But you might want to ask your LLMD about NAC and heavy metals mobilization.
Take care, Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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luvs2ride
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posted
The nutritionist, who was very knowledgeable about heavy metals removal, got very worried when he saw I was taking NAC at fairly high doses.
My doctor seconds this statement. I take just one NAC pill a day. I forget the mgs.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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posted
MariaA - Have you considered trying Idebenone to fight H. Pylori?
It appears to be very potent against H. Pylori (inhibits its respiration), and is generally regarded as very safe and tolerable, and also bioavailable. It's a synthetic Coq10 analogue, I take 100-500mg a day of it.
It has a MIC90 of 1.6~3.2 micrograms/mL against H. Pylori. It apparently has anti-bacterial action against other pathogens too. I wonder what else interesting it may be effective against that isn't yet studied. Bulk Nutrition sells it in bulk powder cheap, which is where I buy mine from. I wouldn't buy much else of their bulk powders though.
-------------------- "You know, the worst, meanest, nastiest, ticks in the world are politicks," - Steve Nostrum Posts: 242 | From South NJ | Registered: Dec 2006
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posted
What's NAC?
Posts: 975 | From California | Registered: Apr 2007
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JimBoB
Unregistered
posted
quote:Originally posted by AndrewInCA: One more question - when do you (or most people) take the herbs? Before, during, after, between meals? His book doesn't state what is best.
- Andrew
Hi Andrew:
Because I had such BAD, bad stomach problems BEFORE I started the herbs and the abx, I took them all with my meals. THAT is one reason I never got up to Buhner's 4 pills, 4 times a day. Instead I got up to 4 pills, 3 times a day. I am fat enough, I didn't want to gain anymore by having FOUR (4) meals a day.
Besides I was taking a lot more than just the core protocol.
Though Buhner does recommend the 4 times to keep some of the herbs, like Andrographis, that is expelled so fast, in your system.
I am now down to two times a day.
I still take them with meals. I take them BETWEEN my main course and the dessert. I now take any abx that I might need for other things BETWEEN meals with 1/3 glass of skim milk only. NO food at all. I think it gets them out of the stomach FASTER.
I do believe that GiGi has recommended taking the herbs away from meals, IF my memory serves me right. I am not sure why though.
Interesting that your doctor doesn't want you to use ALA. I just read in Bryan Rosner's new book that ALA is recommended over chorella, cilantro etc. Now I don't know what to believe. Hiker
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 10180 | From Illinois | Registered: Aug 2004
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clairenotes
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posted
And I think NAC (N-acetyl-cysteine) has really helped me.
Claire
Posts: 1111 | From Colorado | Registered: Oct 2006
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MariaA
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posted
back on herbs-only...
I sure didn't like biaxin. I got the psychiatric side effects (depression, anxiety, 'neediness', poor attention span, emotionality) which a few patients have reported, but which weren't mentioned in the patient side effects sheet that came with the medication (see askapatient.com ). It also made me tired, which azithromycin had done (it's a 'different kind of tired' than Lyme alone had made me feel).
The other more annoying problem is that I had already set up my schedule in such a way that I couldn't be tired during the day- so I ended up drinking coffee, which was very bad for the ulcer. I think the drug sort of helped the ulcer but not entirely (because of the coffee!)- I still feel some pain and I'm taking more herbs for it that were suggested by Stepnen Buhner in the book Herbal Antibiotics. The tiredness went away within a few days of stopping the biaxin- same as what happened when I stopped azithromycin- and I"m not drinking as much caffeine now so everything's better.
The anxiety side effects subsided a little a couple of weeks into the biaxin- strangely, this was at the same time as the 'metallic taste' side effect subsided even though I was still taking the foul stuff- but they were still disruptive enough that it was hard to function. I eventually couldn't stand it anymore and stopped the medication- the anxiety was making it really hard to deal with my already-stressful life. It still felt like I was very emotional for a few days after I stopped the medication.
Anyway, I"m still doing really well from a Lyme perspective. I didnt feel any increase in physical Lyme symptoms during the treatment- I'm one of the rare Lyme patients who never got anxiety or depression during their illness, and Im pretty sure this stuff wasn't a herx (I never herxed on the initial antibiotics that I took during Lyme treatment either, though).
Amazingly I avoided getting a yeast infection for most of the Biaxin treatment because I was on a really strict low-carb diet. Normally I get them all the time, antibiotics or not.
Recently I had some alcohol and a tiny bit of sweet foods over a couple of nights, and ate a slice of pizza and a couple of other carb/candida feeders over the weekend, and some of my Lyme symptoms came back for about three days afterwards (tiredness, a bit of brain fog, and a neck pain that I always had with Lyme). I know for sure that candida was part of the problem because I got a vaginal yeast infection of course. After I fought down the candida a bit (diflucan, caprylic acid, probiotics, and of course eating no grains or sugars), all of these symptoms went away and I was back to a symptom-free 'normal'.
I think I've been posting about once a month that I'm getting better, better, better. I've been symptom-free for at least two months now, I think. (I was on antibiotics for 6 months, then relapsed after quitting, then got on Buhner herbs around Christmastime, and had been steadily improving with some occasional shorter setbacks, which I haven't had in a couple of months!).
I"m still taking the core protocol and other herbs from the Buhner book.
I want to point out, again, that it seems that I only stay symptom-free if I avoid systemic candida, and it seems to be about candida (for me) as much as it seems to be about fighting Lyme. The symptoms are sooo similar for me... I got on a low-carb diet and saw an immediate improvement (to 100% symptom-free) in my Lyme symptoms (after I"d knocked the Lyme down pretty thoroughly with herbs and antibiotics, of course). The diet is hard to maintain, as sometimes it feels like theres nothing to snack on. I do a lot of work in a welding shop that's located nowhere near any restaurants and everyone at the shop is always ordering cheap pizza, and I've been too busy to cook all the time. I found that even in health food stores there's very little main-course food that's canned or nonperishable (so I could leave it at the shop) and that isn't loaded with carbs. Yuck.
Posts: 2552 | From San Francisco | Registered: Apr 2006
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MariaA
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posted
by the way, thinking about all this- I really, really want to thank LymeToo for continuing to hammer home the message about the candida diet. I never would have thought to do it had I not read her postings here. I had assumed that just avoiding sugar was going to be enough for me, which it wasn't apparently.
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bejoy
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posted
Maria,
I haven't followed your whole journey, but I notice the chronic candida problem.
I am aware that mercury in the body will promote candida growth.
My candida problem went from constant no matter what to two or three bouts a year after amalgam removal and some detox (all pre-lyme diagnosis.)
I wonder if you might want to continue a focus on mercury detox. I also understand that decreasing mercury loads allow people to heal more quickly from lyme.
Perhaps you have been through all this already. If so, my apologies.
bejoy
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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MariaA
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posted
Yep, that's exactly what my doctor says.
I'm going to work on that, but I feel a bit crunched for time- I don't really have time to get sick again and the first mercury chelation experience threw me for a serious loop.
I"m about to embark on a three or four month long road trip for some work I do (I teach seminars on a technical subject and I'm doing a tour of sorts in the fall) and it's really scary to contemplate going from feeling symptom-free to potentially getting sicker if I chelate and it doesn't go well.
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posted
Very interesting thread. I am being treating by my LLMD right now with Zithro and Plaquenil. After six months of treatment I was not progressing. I went to see a Naturopath under his recommendation.
The ND put me on an H.Pylori treatment and metal chelation. She is using a very mild chelation treatment that uses Citrus Pectin as the main component. It is called Pectasol. She also wants me to remove all my amalgams and check two crowns for problems underneath. I have visited three dentists and am so confused on what to do. They all say something different. I don't wanted to spend a ton of money on my teeth if it isn't necessary. Now after reading all these posts, I am questioning it even more.
As far as yeast goes, I was having a very difficult time as well until my ND put me on a diet free of corn, wheat, and dairy. I can eat spelt, amaranth, millet, and kamut. I eat only berries from the fruit family as well, and it has definitely worked!! No more yeast...Yeah!!!
Posts: 49 | From Grass Valley, CA | Registered: Jan 2007
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Aniek
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posted
Maria,
Cumanda was the miracle yeast treatment for me. It worked amazingly well at controlling my yeast when I couldn't be on the low carb diet.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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MariaA
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posted
From skimming the Whole Approach forums, I get the impression they're recommending rotating yeast killers rather than taking the same one for months and months?
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posted
Should I be totally avoiding fruit if I am trying to kill a Candida infection? I'm big on snacking on fruits everyday as without snacks to keep my energy up to get through the day. I am wondering what I should replace them with if I cut them out. I'm eating small amounts 8-10 times a day. I find it greatly helps my energy levels. I'm very light weight 129 pounds at 5' 11" so gaining weight isn't much of a problem.
Posts: 526 | From NJ | Registered: May 2007
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clairenotes
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posted
Here is a link to a recent discussion on fruit that might be of help:
Claire
Posts: 1111 | From Colorado | Registered: Oct 2006
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MariaA
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Member # 9128
posted
I used to be the same way. I just started making a really calorie-rich dessert made with stevia, based on this recipe:
http://wholeapproachforums.com/eve/forums/a/tpc/f/9356011311/m/7081057554 I can flavor it using other extracts besides the ones they recommend. My current batch is hazelnuts with hazelnut extract (not easy to find of course, try health food stores). It reminds me of a grainy Nutella or something- I"ll have to add cocoa next time. I find that the salt is a detriment to this recipe, though.
It's REALLY high in fat, though, watch out (and of course some of you have food allergies to things like nuts).
I now keep it in a Tupperware container and just snack on it when I need something quick. It seems to keep without refrigeration. Since there aren't options for me such as crackers or bread or chips, having a snack food that doesn't need refrigeration is really handy.
quote:Originally posted by radfaraf: Should I be totally avoiding fruit if I am trying to kill a Candida infection? I'm big on snacking on fruits everyday as without snacks to keep my energy up to get through the day. I am wondering what I should replace them with if I cut them out. I'm eating small amounts 8-10 times a day. I find it greatly helps my energy levels. I'm very light weight 129 pounds at 5' 11" so gaining weight isn't much of a problem.
-------------------- Symptom Free!!! Thank you all!!!!
MariaA
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Member # 9128
posted
Well, an update from the goofy diet front: I lost weight! In a good way. I finally made it to the gym for the first time in 6 weeks and I'd lost 15 pounds in the meantime. For me that's half of the weight I gained while having Lyme.
Mostly this weight loss is because there's nothing to snack on easily while on this dang diet. I can't really complain- I've adapted to that since it was such a gradual process cutting out 'bad' foods over the past year+. Right now I'm eating really fatty nutty foods, lots of meat, lots of dairy products, and not really exercising. Losing weight in spite of that is pretty cool. I'm going to start exercising more now since it feels so good to me, now that I'm not in any pain.
I recently tried a couple of short road trips out of town, and got to see what it's like being 'no-carb' while on the road (roadside convenience marts are notoriously awful for a lack edible semi-healthy foods). Making up a bunch of nuts-based low-carb goodies from the wholeapproach forums worked OK.
I'm experimenting with a lot more stuff that can be packed away without refrigeration and then rehydrated to make veggie dips.
My Indian friend suggested making all kinds of bean or lentil-based powdered mixes that can be quickly cooked or rehydrated easily to make 'hummus' types of pastes.
I find myself eating a lot of hummus now- it's really good on green beans or celery or other veggie sticks, as a snack.
There's also a lot of good stuff in Middle Eastern cooking that makes a good snack spread or dip- baba ganoush, a dip/spread made from eggplant, muhamarra, a spread made from walnuts and red peppers, and similar 'tahini-based' sauces. I'll report here when I come up with some thing original or type up some of these recipes.
-------------------- Symptom Free!!! Thank you all!!!!
MariaA
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posted
I'm getting a couple of amalgams removed tomorrow due to getting a crown done on one of my other teeth. Here's my MD's advice on amalgam removal:
Pre-amalgam protocol ...
vitamin C 3,000 mg 3 times daily
tons of chlorella
mercury binder- sodium alginate or metachel
selenium
whey protein or branched chain amino acids
multi vitamin double the normal dose
Im not sure how useful all of that info is to anyone, but Im also adding MSM for the sulfur content. I should be quite metallic/mineral-drenched by the time all this stuff is digested!
I also keep hearing from many different people (including a dental assistant) that it's extremely important that the dentist deal with the mercury dust and vapor properly. My dental assistant friend says that the practices in the industry vary widely and that sometimes they're quite atrocious (I"m pretty sure my dentist is good at all of this as we've discussed safety in amalgam removal before and he's an anti-amalgam dentist)
I ordered some metachel. I already have sodium alginate in the form of that Solaray Detox formula.
-------------------- Symptom Free!!! Thank you all!!!!
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