354 replies to this topic

[notlupus]

And for Zinc I'm pretty sure I read that testing through white blood cells or even a taste test was more accurate than serum.

This is interesting. The elderberry supplement I take has zinc in it. They switched it to no zinc because so many people complained about the taste and I bought all of the zinc ones I could find after the switch because it didn't taste bad to me.

Guess I'm on the right track taking 50mg zinc gluconate. Guess I should up the magnesium since I take alpha lipoic acid.

Funk, definitely keep us updated on your progress. I'm probably going to switch to pen injections and fluconazole soon. Schardt makes a lot of sense to me.

If only I could figure out a nootropic mix for the cat now. Stupid animal got too close to a candle last night and the singed fur made the whole apartment stink.

[k10]

Getting a hair mineral analysis would be a more accurate look of your recent mineral status, it is cheap and checks for over a dozen minerals. You could have it repeated every 6 months or so.

[nameless]

That makes sense regarding serum levels. But I was wondering if low serum copper could indicate something else, like lowered inflammation. And if serum copper even truly indicates copper status?

I assume you never tested low in copper or zinc previously?

I've read in an article how most Lyme people are typically low in mag, manganese and copper, but I don't know how scientifically accurate that is.

Edited by nameless, 30 March 2009 - 07:34 PM.

[FunkOdyssey]

That makes sense regarding serum levels. But I was wondering if low serum copper could indicate something else, like lowered inflammation. And if serum copper even truly indicates copper status?

I assume you never tested low in copper or zinc previously?

I've read in an article how most Lyme people are typically low in mag, manganese and copper, but I don't know how scientifically accurate that is.

I've never had a copper or zinc test before, period, so I don't have any baseline for comparison. I'm going to retest the serum levels without changing my should-be-sufficent intake of zinc and copper to see if I was correct about lipoic acid.

You do make an interesting point about copper -- if high levels are a marker for inflammation, then maybe low levels could be evidence of low or suppressed inflammation? Its logically appealing, but I don't know if its true.

My ESR and CRP are both very low for someone with Lyme. My C3a and C4a were also low. Not sure what this means, maybe weakened immunity.

Edited by FunkOdyssey, 30 March 2009 - 07:46 PM.

[nameless]

As for zinc-copper supplements, would Jarrow's (OptiZinc) be considered the best type? The fact it has methonine scared me away from it, due to the theory (admittedly just a theory) that methonine restriction could increase longevity, so supplementing with extra methonine didn't seem wise. Or is that just my scaredy-cat impulse taking over?

I'm only getting extra zinc-copper from Multi-Basics, and at around 1 cap daily that isn't a whole lot. I've also considered AOR's Zinc-Copper supplement, but it's a pain to find outside of Canada, and it's expensive shipping from Canada just for a single item. Others in the past recommended zinc citrate to me, but then I need a separate copper supplement too.

[FunkOdyssey]

As for zinc-copper supplements, would Jarrow's (OptiZinc) be considered the best type? The fact it has methonine scared me away from it, due to the theory (admittedly just a theory) that methonine restriction could increase longevity, so supplementing with extra methonine didn't seem wise. Or is that just my scaredy-cat impulse taking over?

I'm only getting extra zinc-copper from Multi-Basics, and at around 1 cap daily that isn't a whole lot. I've also considered AOR's Zinc-Copper supplement, but it's a pain to find outside of Canada, and it's expensive shipping from Canada just for a single item. Others in the past recommended zinc citrate to me, but then I need a separate copper supplement too.

That is a tiny, tiny amount of methionine in the little zinc capsule, and I think it would be invisible in the grand scheme of a day's intake of protein.

[nameless]

That is a tiny, tiny amount of methionine in the little zinc capsule, and I think it would be invisible in the grand scheme of a day's intake of protein.

Thanks, you are right. I think there is approx. 60mg of methonine is in one Jarrow zinc-copper capsule, while a burger has about 300mg or a breast of chicken 500mg (according to the place I looked up the data), so it is a tiny bit. Although I wonder if Lyme people would be better off with a higher copper ratio than 15:1? Does Lyme feed off of Zinc and other minerals and that causes mineral deficiences in many Lyme people? Curious if a Lyme person would be better off taking extra minerals, or sort of starving Lyme... but then you'd probably wreck your immune system due to mineral deficiencies, so I guess that isn't a good idea.

Edited by nameless, 30 March 2009 - 09:12 PM.

[sdxl]

Have to agree on the negligible amount of methionine. About 34 mg according to my calculation in each capsule is nothing to worry about.

And I'm certain 10 billion CFU Bifantis can't be right, since it would require you to take 10 caps Align daily. This would eat all of your budget.

[FunkOdyssey]

That's correct, it should be 1 billion.

[Lufega]

I performed a hair mineral analysis with a last that washes the hair with chemicals and solvents. It showed my mineral status all out of order. What surprised me was how accurate it actually was. I confirmed most of the deficiencies with serum and whole blood testing and the hair test was right on... I used Doctor's Data labs but if you have access to a more accurate lab, that is, one that doesn't wash the hair, use them instead! According to the Cutler theory, an impaired mineral transport problem wachamathingy implies mercury toxicity and I did feel better when I started chelating but I wonder if all these supposed mercury toxic peoples are just Lyme infected.

I think there is definitely a relationship b/w low zinc, copper, manganese, B1 and magnesium in Lyme patients. First off, copper = connective tissue. CT is the main component in the body that is affected by BB. I don't know what the mechanism is, disrupting enzymatic processes, maybe using up all the minerals, etc. I read a few reports about manganese and lyme that allude to BB using OTHER minerals as well, but fail to mention which. Also, both magnesium and manganese are needed for the proper use of B1 so I wouldn't be surprised if you found yourself low in B1 as well. I supplemented with 3 and even 6 mg copper daily for months and my ceruloplasmin levels are still low. I have never used ALA. So, where's all the copper going? I can waste time and money testing stool and urine but I suspect those will turn up positive. Up to know, all my tests have come back normal, except for the nutritional ones.

The same goes for magnesium. I don't buy the gut malabsorption problem since I feel the effect of an acute magnesium dose. I tested urine magnesium loss and it came back normal. So again, where does all the magnesium go?? The same goes for manganese...I am addicted to cashews which are high in minerals, especially copper and manganese. Over the last few months I was eating 5 pounds a week. If anything, I should have a mineral overload but I do not.

[FunkOdyssey]

Olga just gave me my first bicillin shot. Oww. I'll be sitting sideways for awhile.

[notlupus]

Olga just gave me my first bicillin shot. Oww. I'll be sitting sideways for awhile.

I now understand what you mean. I've given and received many injections (the legal kind, worked for a vet and did B12 injections for a while), but have never felt anything like the soreness the pen causes before. Small price to pay if it works though. I'm keeping a bottle of benadryl on me today just to be safe though.

[FunkOdyssey]

Changes to regimen (updates made to original post)-

Removed:
Tetracycline - switching to Minocycline
Serrapeptase - I think this may have been irritating my lungs, breathing was a bit hoarse/uncomfortable
Resveratrol - too expensive for now
Butterbur - may have been suppressing testosterone production
Benfotiamine - cost savings, still get 55mg in Advanced B Complex
Bacopa - cost savings, unconvincing evidence, new research suggests extracts standardized to bacosides A&B may be missing important actives
Andrographis - I'm incorporating more liver-taxing medications and don't want to waste liver processing capacity on a less-proven herb (andrographolides can cause liver damage at high doses)

Changed:
Armour Thyroid - dose increased to 135mg daily since T3 and T4 were a little low
Taurine - reduced to 1g at bedtime to compensate for addition of magnesium taurate
NAC - reduced to 1200mg daily
Jarrow BroccoMax - reduced to 1 cap daily for cost savings
Creatine - one 5g serving at night to reduce hassle of bulk powder dosing
Glutamine - one 10g serving at night to reduce hassle of bulk powder dosing

Added:
Pramipexole - titrated up to 0.25mg 3x daily (0.75mg total), aiming for 1.125mg or 1.5mg ultimately.
Minocycline - started at 100mg 2x daily (200mg total), hope to increase to 200mg x2 daily
Fluconazole - every other day for yeast control, I haven't had a noticeable problem yet but I am about to take more antibiotics simultaneously than ever before
IM Penicillin G Benzathine - intramuscular sustained release penicillin. 1.5" needle into my a$s every other day. Hardcore.
Magnesium Taurate - added another 500mg of magnesium daily from this excellent source, after RBC magnesium came back on the low side

I don't have the full story yet, but apparently some form of authority has been harassing my new Lyme doc and she is no longer going to treat Lyme patients. Booo. That's alright though -- I'm going to continue seeing her for various supportive therapies (thyroid replacement, etc) and for regular lab testing, while I handle the antibiotic regimen myself. I'm looking forward to doing things my way.

I'm introducing and ramping up new drugs slowly. Currently, I'm on a full dose of IM penicillin and half dose of minocycline and am doing pretty well. I will be adding roxithromycin and tinidazole soon. I also have rifampin, which I will probably introduce last or alternate with tinidazole, I haven't decided yet.

I think I hit a gold mine with pramipexole. It probably deserves it own thread. Its neuroprotective, neurotrophic, an antidepressant, anti-anhedonic, anxiolytic, improves motivation/initiative, boosts libido and reduces refractory time. It may be of specific value in Lyme as it prevents lipopolysaccharide-induced dopaminergic cell death. It may be useful as a general anti-aging drug, considering that an adult loses 5-10% of their dopaminergic neurons every decade and pramipexole may have the power to halt or reverse this loss.

[k10]

What about Iodione (Iodoral)? I've recently been reading a little about it and apparently it seems to be a fairly popular addition as a lyme treatment by many LLMD's...antibacterial, antiviral, antifungal... very potent stuff. Should allow you to require less of your thyroid medication as well. Apparently Iodine deficiency is reaching an epidemic so I wouldn't be surprised if adding iodoral to your regime would be a huge asset.

[kismet]

I'm introducing and ramping up new drugs slowly. Currently, I'm on a full dose of IM penicillin and half dose of minocycline and am doing pretty well. I will be adding roxithromycin and tinidazole soon. I also have rifampin, which I will probably introduce last or alternate with tinidazole, I haven't decided yet.

Wow, is this antibiotic onslaught really necessary? Is there any chance it will cure you? Are you getting any sides? Are there any cases of curing lyme whit those antibiotics or is it merely "managing" of disease and symptoms?

[nowayout]

I think I hit a gold mine with pramipexole. It probably deserves it own thread.

Several unusual adverse effects of this medication may include compulsive gambling, hypersexualiy, and overeating. Other compulsive behaviors, such as excessive shopping and even cross-dressing, have been reported.

I guess one must titrate very carefully.

Edited by andre, 07 April 2009 - 12:41 PM.

[FunkOdyssey]

What about Iodione (Iodoral)? I've recently been reading a little about it and apparently it seems to be a fairly popular addition as a lyme treatment by many LLMD's...antibacterial, antiviral, antifungal... very potent stuff. Should allow you to require less of your thyroid medication as well. Apparently Iodine deficiency is reaching an epidemic so I wouldn't be surprised if adding iodoral to your regime would be a huge asset.

I actually have a 24-hour iodine urine test that I haven't performed yet due to the inconvenience of peeing into a jug for 24 hours (not the kind of thing you can do on a work day). I will consider iodine supplementation only if that comes back low.

Wow, is this antibiotic onslaught really necessary? Is there any chance it will cure you? Are you getting any sides? Are there any cases of curing lyme whit those antibiotics or is it merely "managing" of disease and symptoms?

Yes, I believe it is necessary. There is a good chance it will lead to state of remission where the numbers of bacteria are too low to affect me -- many would describe this as a cure. However, it is unlikely they could ever be completely eradicated. Using my tweaked definition of the word "cure", there are many cases of curing Lyme with various combinations of the antibiotics I will be using.

Ultimately I will want to introduce LDN again at a point where these drugs are tolerated well (this will probably take some time), and then discontinue most of them once all signs and symptoms are resolved. I'll probably still remain on a low dose of minocycline for much longer and occasionally pulse other antibiotics to ensure the maintenance of remission. And I'll take LDN indefinitely.

Several unusual adverse effects of this medication may include compulsive gambling, hypersexuality, and overeating. Other compulsive behaviors, such as excessive shopping and even cross-dressing, have been reported.

Adverse effects? I call that a good time! Actually I looked into this a little more and almost exclusively, the patients that experienced those reactions were parkinson's patients that were using pramipexole combined with substantial doses of L-dopa simultaneously. When pramipexole is used alone in other groups of patients that are probably closer to me physiologically, like people with restless leg syndrome or bipolar depression, none of these effects are noted.

[notlupus]

Thanks for the post about andrographis. I'd forgotten it was hard on the liver, so I'll quit taking it now (diflucan should get here early next week). Guess I should start a different topic with everything I'm taking so I can get some advice.

[FunkOdyssey]

They were doing a trial in HIV patients with 400mg of andrographolide IIRC and had to abort the trial because too many had elevated liver enzymes.

[notlupus]

They were doing a trial in HIV patients with 400mg of andrographolide IIRC and had to abort the trial because too many had elevated liver enzymes.

I remember seeing that now and thinking it was a very high dose. Right now I'm taking 120mg of andrographolides a day, but it's probably best to stop while on the fluconazole.

[stephen_b]

Chitosan oligosaccharides have somehow flown under my radar. I have never heard of these before, ever, and yet there are 218 hits in pubmed. I'm such a noob.

PMID 18437996 found that "many metal ions could affect the antibacterial activity of chitosan, such as K+, Na+, Mg2+ and Ca2+. High concentration (about 0.5%) of metal ions could make chitosan completely lose its antibacterial activity, except for the effect of Na+ on the antibacterial activity against Staphylococcus aureus".

Perhaps this may be a best when taken before bed.

Stephen

[k10]

Funk I was planning on starting creatine very soon, and I was wondering why you chose to take it at bedtime?

Also when you started it, did you ever do a loading phase, or did you immediately start on it once a day?

I plan on taking it for my muscle weakness & for mental clarity.

[notlupus]

Another question for Funk. Are you bruising around the injection sites? I looked like I was into some serious S&M or something when I was doing the injections before. I'll be starting them again soon and was wondering if it was normal or if I should order some K to try to help reduce it.

[Pablo M]

Funk, I'd recommend you read Tom Levy's book Curing the Incurable: Vitamin C, Infectious Diseases and Toxins. He details the tremendous research supporting vitamin C in treating a wide variety of bacterial and viral diseases. If you are interested I can summarize the multiple ways vitamin C supports immune function. Here is some information related to vitamin C that may be of benefit:
Vitamin C and lyme
If I were you I'd take ascorbate to bowel tolerance (especially since you mention having a Herxheimer reaction) and consider finding a physician to deliver IV ascorbate as well.

--Pablo

[Tim1023]

Funk,

Sorry to hear about your lyme problem. That is quite an ever-changing regimen that you are on. I would throw in my 2 cents, but I get the feeling that you do not give much credence to anything that has not made its way into the hallowed halls of PUBMED. Oh well, cay sara sara!

Seriously though, I wish you best of luck. I will say this, though: you may want to consider changing to supplements that don't contain hydrogenated fats. I noticed that several that you are taking have them. Just a suggestion.

Tim

Edited by Tim1023, 06 July 2009 - 06:29 AM.

[FunkOdyssey]

I switched from bicillin to high dose Amoxicillin because Olga could not handle giving me the injections anymore, she developed some kind of phobia of giving the injections. Looks like nursing is off the table for her.

k10: I was taking creatine at bedtime because I feel it does not really matter what time of day it is taken. I now take it earlier in the day. Never any loading phase, just 5 grams daily indefinitely.

I recently learned that bismuth is apparently very effective against Lyme and that pepto-bismol can resolve digestive problems that result from Lyme infection of the gut. This makes alot of sense as it is included in protocols vs. h.pylori, another spirochete, in combination with other antibiotics (yes bismuth is an antibiotic). I am anxious to experiment with this.

Pepto-bismol, who would've thought?

Edited by FunkOdyssey, 06 July 2009 - 06:24 PM.

[rwac]

Pepto-bismol, who would've thought?

Funk, Does the aluminum in Pepto-Bismol bother you at all ?

[FunkOdyssey]

Supposedly the molecule is too large to be absorbed, and in any event Lyme is more dangerous than a little bit of complexed aluminum.

[rwac]

Supposedly the molecule is too large to be absorbed, and in any event Lyme is more dangerous than a little bit of complexed aluminum.

Probably shouldn't take it around gluten, then.

[Tom D]

First time poster. Let me start by thanking you, Funk. This is an amazing thread that give me a lot of hope and company too. I got diagnosed a year ago with Lyme. Had NO IDEA there was anything wrong with me. Just thought I kept catching bad colds and flus from time to time that laid me out. Now I believe strongly I have had it since I was a kid. I am now nine months into bicillin treatment and have recently added amoxycilin, along with Mepron and a couple other of what I call booster agents, ones that make the antibiotics function better. Will try and get those names to you, I am sure you already are aware.

Just hearing your explorations gives me a lot of food for thought, but I thought I should tell you...I do my own bicillin injections, TWO needles every two and a half days, and it is easy after the first few times. My understanding is that bicillin works intracellularly (if I am using the right word) while amoxy is a cell wall agent, or the other way around...in any case, Dr H in California, and Dr B on Long Island both seem to think that attacking from both fronts significantly increases the chance of a positive outcome. Bicillin is powerful stuff, and I have tolerated it remarkably well. Oh, and I add a touch of lidocane to the needle and that takes uncomfortability out of the equation pretty much permanently.

Wishing you the best, and hoping you consider self-injection.

Tom