354 replies to this topic

[ajnast4r]

Natrol 5-HTP TR (Time Released) - 100mg a bit before bedtime. Using to circumvent broken tryptophan metabolism due to chronic infection. Instant release 5-htp seems to wreak havoc on everything with brief, super high serotonin spike. Noticed improved sleep quality and daytime alertness and mood with the time released version.

I also added Olga's regimen to the original post. Now that we are married I thought it was worthy of documentation.

can you comment on the tryptophan metabolism thing a bit more... youre familiar with my problem and i find 5htp helps my mood and sleep a lot better than trytophan.

[FunkOdyssey]

Natrol 5-HTP TR (Time Released) - 100mg a bit before bedtime. Using to circumvent broken tryptophan metabolism due to chronic infection. Instant release 5-htp seems to wreak havoc on everything with brief, super high serotonin spike. Noticed improved sleep quality and daytime alertness and mood with the time released version.

I also added Olga's regimen to the original post. Now that we are married I thought it was worthy of documentation.

can you comment on the tryptophan metabolism thing a bit more... youre familiar with my problem and i find 5htp helps my mood and sleep a lot better than trytophan.

In chronic infection or any other state that results in elevated production of IFN-gamma, an enzyme called IDO is induced which steals tryptophan away from the tryptophan -> serotonin -> melatonin pathway. The metabolites of tryptophan that IDO produces have variable effects, some benefit the immune system, some are neurotoxic, and some eventually become NAD. It is via the IDO pathway that tryptophan can replace the function of vitamin B3. The immune system does this either to deny tryptophan to infecting pathogens or to generate more NAD to power the immune cells. I personally believe it is the latter.

Taking more tryptophan in this scenario is a bad idea because it will simply generate more undesirable metabolites (like the neurotoxic quinolinic acid). You can skirt around the entire problem with 5-HTP. I've also seen evidence that supplementing with high doses of niacin can reduce IDO-mediated tryptophan metabolism and improve tryptophan availability for serotonin production (at least in people with HIV), which led me to include a total of 500mg nicotinic acid in my regimen, spread throughout the day.

I am personally having much better results with 100mg of time-released 5-HTP than 100mg instant release. The regular 5-HTP caused digestive discomfort and a spike-then-crash effect on mood.

Edited by FunkOdyssey, 18 February 2009 - 08:23 PM.

[FunkOdyssey]

I don't think NAD lozenges do anything. I can't discern any difference between taking them or not. Boo. Taking them out of regimen and sticking with my 4x daily nicotinic acid.

Added Jarrow CarotenALL to Olga's regimen in original post and updated with total monthly cost.

[notlupus]

Thanks for posting and updating this topic! It's been nearly impossible to find info on supplements to take for Lyme, unless it's some doctor trying to sell their own proprietary blend. I think I'm going to try taking some andrographis and olive leaf in addition to what I'm doing now. I'll have good days where I feel almost normal and bad days where I can barely get out of bed and haven't been able to figure out the trigger so far.

Funny thing is I found this forum while trying to look for a more affordable source of modafinil. I have a script but my insurance won't cover it and I can't afford over $400 a month for a single medication.

[k10]

Funk just curious are you currently working? I'm just trying to comprehend how you can afford all of this, and fit all these dosing schedules into your schedule.

I'm taking a lot of supplements for lymes right now, but I'll probably be changing a lot around thanks to the regimen you posted. It seems excellent.

[FunkOdyssey]

Funk just curious are you currently working? I'm just trying to comprehend how you can afford all of this, and fit all these dosing schedules into your schedule.

I'm taking a lot of supplements for lymes right now, but I'll probably be changing a lot around thanks to the regimen you posted. It seems excellent.

Thanks, I'm pretty happy with it. I do work full-time. I have a couple things going for me in that regard, my job is not particularly demanding for me, and I have alot of flexibility with hours and time off. I also work alone a little cubicle, so no one really notices if I'm in a fog, spacing out in lala land. My work is basically a series of projects and when I am feeling well and have energy I burn through them, when I feel like crap I can back off for awhile.

I am really careful and frugal with money with the exception of this particular area. Instead of gambling or going out in the city every weekend, health is my money-sucking hobby.

Edited by FunkOdyssey, 22 February 2009 - 07:16 PM.

[FunkOdyssey]

Changed:
Creatine - 3.33g 2x daily
L-Glutamine - 10g 2x daily. I am not coming home for lunch anymore and don't want to mess with bulk powder supplements at work.
5-HTP - reduced to 50mg (cut tablet with pill splitter). The time release tablet appears homogenous internally, and since it does not have distinct layers I believe it will function normally when split in half. 100mg seemed a little too high. I'm not looking for any therapeutic effect from this supplement, I want only to provide a physiologically normal amount of serotonin and melatonin precursor.
PureWay-C - reduced to 500mg 2x daily. I decided 500mg 4x daily is probably a waste of money.
P-5-P - reduced to 100mg 2x daily. I realized there is 50mg in the AOR Advanced B Complex I am taking at lunch.

Added:
CDP Choline - 250mg at breakfast. I found a bottle in the basement. Why not.
Memantine - currently at 15mg, will move to 20mg tomorrow or the next day depending on severity of transient memantine-induced zombie'ism. Lyme-literate psychiatrists are finding it effective for treating Lyme-related cognitive problems:

http://www.psychiatr...56?pageNumber=2
"Memantine can improve white matter dysfunction and processing speed, reduce word inventions (neologisms), improve word retrieval, and reduce "static and crackle in the head." In addition, better verbal comprehension, and better focus have been reported."

I also expect it to prevent tolerance to the motivating and focus enhancing effects of the low-dose (3.5 - 5.25mg) nicotine patches I will be experimenting with next week. I have very high hopes for these.

Edited by FunkOdyssey, 22 February 2009 - 08:39 PM.

[k10]

My work is basically a series of projects and when I am feeling well and have energy I burn through them, when I feel like crap I can back off for awhile.

This sounds like an amazing job... what is it?

Creatine - 3.33g 2x daily

What is the creatine helping with?

[FunkOdyssey]

My work is basically a series of projects and when I am feeling well and have energy I burn through them, when I feel like crap I can back off for awhile.

This sounds like an amazing job... what is it?

Creatine - 3.33g 2x daily

What is the creatine helping with?

I work in the two-way radio industry designing communication systems primarily for public safety (police, fire depts). Creatine is neuroprotective, improves cognition, and I do lift weights regularly so it is expected to help there as well.

[ajnast4r]

5-HTP - reduced to 50mg (cut tablet with pill splitter). The time release tablet appears homogenous internally, and since it does not have distinct layers I believe it will function normally when split in half. 100mg seemed a little too high. I'm not looking for any therapeutic effect from this supplement, I want only to provide a physiologically normal amount of serotonin and melatonin precursor.

i would call and ask to make sure.. most time released tablets ive seen do not have layers. also this product has [among other things] 25mg sustained release 5-htp

Edited by ajnast4r, 23 February 2009 - 07:46 AM.

[Lufega]

I also work alone a little cubicle, so no one really notices if I'm in a fog, spacing out in lala land. My work is basically a series of projects and when I am feeling well and have energy I burn through them, when I feel like crap I can back off for awhile.

I worked for a seafood importer/exporter and my job was very similar...cubicle, project based. Some days I would literally sit there bobbing my head from side to side (except when my manager walked by). Other days I was productive and got worked done but either way, I always got my worked done on time...and right! This is even though I have terrible cognitive problems. I wonder how bad-ass we could all be if we somehow figured out a cure??? Too bad I wasn't into health and supplements at that time :(

[FunkOdyssey]

I wonder how bad-ass we could all be if we somehow figured out a cure???

I am absolutely definitely getting better and when I am 100% its game over for the rest of the world. That's right, I just put the entire world on notice.

Edited by FunkOdyssey, 24 February 2009 - 03:37 AM.

[notlupus]

I worked for a seafood importer/exporter and my job was very similar...cubicle, project based. Some days I would literally sit there bobbing my head from side to side (except when my manager walked by). Other days I was productive and got worked done but either way, I always got my worked done on time...and right! This is even though I have terrible cognitive problems. I wonder how bad-ass we could all be if we somehow figured out a cure??? Too bad I wasn't into health and supplements at that time :(

What I would give for that job...

Try using sterile procedure in a lyme fog. Better yet, liquid nitrogen (thankfully no incidents, but it always scared me knowing how accident prone I have become) I'd forget about my cells for days and ruin experiments. It was truly awful and depressing, thankfully the fog is slowly lifting and I've been able to focus on other things.

I shouldn't complain though, I used to love to program and the lyme fog made it nearly impossible.

Edited by notlupus, 24 February 2009 - 05:15 AM.

[FunkOdyssey]

I made it to 20mg of memantine in a record short titration time of 5 days. Don't try this at home folks, unless you are willing to sacrifice a few days of brain functioning life. The view is good from this side of the zombie-fog-time-warp though. Using Teamfortress 2 as my benchmark for processing speed, I am performing much better than my pre-memantine state.

Next up, nicotine patches. I'll begin with a 21mg patch cut into fourths, for 5.25mg, and expect a delivered dose of approximately 2.625mg over 12 hours of exposure. This is roughly equivalent to 2 1/2 cigarettes, with vastly superior pharmacokinetics of course.

Edited by FunkOdyssey, 24 February 2009 - 04:44 PM.

[rwac]

I also work alone a little cubicle, so no one really notices if I'm in a fog, spacing out in lala land. My work is basically a series of projects and when I am feeling well and have energy I burn through them, when I feel like crap I can back off for awhile.

I used to have a good, challenging job.
Since I just figured out I have Lyme, I'm hoping the antibiotics will improve things.

It would have been useful to figure out that it was Lyme say 6 months ago, but what do you do.

[FunkOdyssey]

I saw my new Lyme doctor on Friday. My old one was too conservative for me, he liked monotherapy or a maximum of two-drug combinations, and he'd only run each for 4-6 weeks before forcing a 10 day break and switching regimens. This new doctor studied under the infamous Dr. H in NY (its customary not to print LLMD names on the internet to protect them from lawsuits and medical boards) and uses aggressive multi-drug protocols to target all forms of borrelia simultaneously (spirochete, CWD / L-form, cyst) as well as any co-infections that are present.

I had 14 vials of blood drawn and the most comprehensive testing I could imagine, everything from hormones to minerals to bugs like rocky mountain spotted fever, brucella, chlamydia pneumoniae, tularemia, etc. I'm also getting a Babesia Fluorescent In-Situ Hybridization (FISH) test done through Igenex, which detects the RNA of Babesia rather than looking for antibodies. I love this doctor, she is super thorough and super competent. She is also heavily into supplements and wants me to bring in all of my supplements to check them out, which is going to be hilarious when I show up with 30 bottles, but hey, she asked for it.

We're waiting on the results of my testing and an eye exam to clear me for Plaquenil (hydroxychloroquine) before changing my regimen from the current tetracycline. She said I'd be an ideal candidate for IV rocephin because of my long-standing illness and neurological involvement, however I am scared of sepsis and restriction of activity imposed by the PICC line. We will go with IM bicillin shots instead, since these are the second best option and nearly as effective. I was joking that Olga's first duties as my wife will include 3x weekly injections in the a$s, and that probably wasn't what she signed up for. Laughs were had by all. You have to inject the bicillin into the upper outside quadrant of the butt cheek, so Olga is planning to draw a grid on me with a marker to ensure accurate placement. No, I will not be posting pics.

I see her March 21st to decide on the new regimen which will likely include IM bicillin, plaquenil, a tetracycline and/or a macrolide, and one or two additional antibiotics depending on the results of testing.

In the meantime I have been taking bromelain along with my doses of tetracycline and it absolutely does increase the potency of a given dose. I felt like I got hit by a mack truck the first time I tried it and experienced some new joint pains. Subsequent doses have become more tolerable.

[notlupus]

I've been thinking about trying bicillin, let me know how it goes! If I forget to take the amoxi or take it late it makes me feel awful for days so the bicillin is very tempting.

Edited by notlupus, 09 March 2009 - 08:34 PM.

[krillin]

Here's an anti-herxing agent that ARG calls NanoTek Chitosan.

[FunkOdyssey]

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.

[FunkOdyssey]

After some review that stuff looks really good and I am still shocked and appalled that I have never heard of it before. I ordered a bottle. It binds to bacterial lipopolysaccharides (this is probably the mechanism for reduction of herx severity), has direct anti-bacterial action, stimulates the immune system, protects against glutamate neurotoxicity (how? I have no idea), inhibits fat accumulation, fights cancer, and more

It must be the best thing I've never heard of.

[Lufega]

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.

I read about this a few days ago because it also has anti-biofilm actions but got turned away from it because it can deplete a lot of minerals like magnesium, copper, and others, which I'm trying to elevate. However, there seems to be more to this than mineral chelation....I'll have a closer look.

Speaking of minerals, I was trying to figure out what the cause of magnesium deficiency is for me. It's not "diet" per se, since I've been supplementing with an amount higher than the RDA for over a year and I think I'm absorbing it well. Yet, my levels always test low. I always feel the effects of magnesium and I have no diarrhea so for that reason I discarded malabsorption problems due to Candida, which is a common excuse in the forums. Finally, other possibility is renal loss but that test just came back negative. So what else could it be? Well, what if, in a chronic infective state such as Lyme disease, assuming that I'm positive, BB uses other minerals like magnesium, copper, etc. aside from manganese for it's metabolism? This would explain the constant low levels for me. This is seen in some parasites, for example, where they cause anemia in patients by taking up all the dietary B12, so the idea is a possibility. Bleh.

[nameless]

Yet, my levels always test low. I always feel the effects of magnesium and I have no diarrhea so for that reason I discarded malabsorption problems due to Candida, which is a common excuse in the forums

How are you measuring your mag levels? Serum levels are usually inaccurate, unless you are on your deathbed due to a magnesium deficiency. Mag RBC may be somewhat better. Intracellular (which can be hard to get) or mag loading tests probably are the most accurate.

What type of magnesium are you using?

[notlupus]

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.

I read about this a few days ago because it also has anti-biofilm actions but got turned away from it because it can deplete a lot of minerals like magnesium, copper, and others, which I'm trying to elevate. However, there seems to be more to this than mineral chelation....I'll have a closer look.

Sounds like activated charcoal. I will admit to considering stopping all the supplements and doing a couple days of activated charcoal during a really bad herx but haven't tried it since I don't have any around.

[FunkOdyssey]

I'm going to experiment with it when I'm not feeling well, not as a continuous supplement, since it does seem to have the potential to interfere with absorption of various nutrients.

[Lufega]

Yet, my levels always test low. I always feel the effects of magnesium and I have no diarrhea so for that reason I discarded malabsorption problems due to Candida, which is a common excuse in the forums

How are you measuring your mag levels? Serum levels are usually inaccurate, unless you are on your deathbed due to a magnesium deficiency. Mag RBC may be somewhat better. Intracellular (which can be hard to get) or mag loading tests probably are the most accurate.

What type of magnesium are you using?

I just performed serum magnesium levels and even though that test is innacurate turning out many false negatives, my values always show up positive for magnesium deficiency. So I can only imagine how deplete my intracellular levels are. I've used every kind in the book except for magnesium orotate which I have an order coming in. This is daunting but I still believe something else is using up all my mag. There was an article I read about Lyme and manganese that eluded to the idea that other minerals are involved in its metabolism but failed to mention with ones. Bleh....

Edited by Lufega, 12 March 2009 - 12:32 AM.

[youandme]

Hi Funk,

Just reading your updates...'Plaq'...would you say that is an immunosuppressant ..any idea how it works ?

Cheers

[notlupus]

Plaquenil is an antimalarial also used to treat rheumatoid arthritis. It sounds scary because of the vision tests, but those are just so they catch it before there is any permanent loss of peripheral vision. Many people are on it for years and years without problems. In lyme it helps break up the cystic form of the spirochetes so they will be susceptible to the other antibiotics that are being taken. I'm going to be taking metronidazole instead of plaquenil because I don't think my insurance covers the vision tests and my doctor (non-LLMD) is more familiar with it.

[FunkOdyssey]

Plaquenil kills the cyst form of Lyme and potentiates the action of macrolide antibiotics against Lyme, possibly by increasing the pH of cell compartments where borrelia is hiding (macrolides are more effective at higher pH). That plaquenil synergizes with macrolides is without doubt, the mechanism is not 100% certain but the prevailing pH hypothesis sounds good to me.

Int Microbiol. 2002 Mar;5(1):25-31.
An in vitro study of the susceptibility of mobile and cystic forms of Borrelia burgdorferi to hydroxychloroquine.
Brorson O, Brorson SH.

Department of Microbiology, Vestfold Sentralsykehus, Tønsberg, Norway.

In this work the susceptibility of mobile and cystic forms of Borrelia burgdorferi to hydroxychloroquine (HCQ) was studied. The minimal bactericidal concentration (MBC) of HCQ against the mobile spirochetes was > 32 microg/ml at 37 degrees C, and > 128 microg/ml at 30 degrees C. Incubation with HCQ significantly reduced the conversion of mobile spirochetes to cystic forms. When incubated at 37 degrees C, the MBC for young biologically active cysts (1-day old) was > 8 microg/ml, but it was > 32 microg/ml for old cysts (1-week old). Acridine orange staining, dark-field microscopy and transmission electron microscopy revealed that the contents of the cysts were partly degraded when the concentration of HCQ was > or = MBC. At high concentrations of HCQ (256 microg/ml) about 95% of the cysts were ruptured. When the concentration of HCQ was > or = MBC, core structures did not develop inside the cysts, and the amount of RNA in these cysts decreased significantly. Spirochetal structures inside the cysts dissolved in the presence of high concentrations of HCQ. When the concentration of HCQ was > or = MBC, the core structures inside the cysts were eliminated. These observations may be valuable in the treatment of resistant infections caused by B. burgdorferi, and suggest that a combination of HCQ and a macrolide antibiotic could eradicate both cystic and mobile forms of B. burgdorferi.

PMID: 12102233

Med Sci Monit. 2003 Nov;9(11):PI136-42.
Macrolide therapy of chronic Lyme Disease.
Donta ST.

Boston University Medical Center, 650 Albany Street-8th Floor, Boston, MA 02118, U.S.A. sam.donta@bmc.org

BACKGROUND: Macrolide antibiotics are highly active in vitro against B.burgdorferi, but have limited efficacy in the treatment of patients with Lyme Disease. As macrolides are less active at a low pH, their poor clinical activity might be due to localization of borrelia to an acidic endosome, and their activity improved by alkalinization of that compartment with hydroxychloroquine. MATERIAL/METHODS: 235 patients with a multi-symptom complex typical of chronic Lyme disease, ie fatigue, musculoskeletal pain, and neurocognitive dysfunction and with serologic reactivity against B.burgdorferi were treated with a macrolide antibiotic (eg clarithromycin) and hydroxychloroquine. RESULTS: Eighty % of patients had self-reported improvement of 50% or more at the end of 3 months. After 2 months of treatment, 20% of patients felt markedly improved (75-100% of normal); after 3 months of treatment, 45% were markedly improved. Improvement frequently did not begin until after several weeks of therapy. There were no differences among the three macrolide antibiotics used. Patients who had been on hydroxychloroquine or macrolide antibiotic alone had experienced little or no improvement. Compared to patients ill for less than 3 years, the onset of improvement was slower, and the failure rate higher in patients who were ill for longer time periods. CONCLUSIONS: These results support the hypothesis that the Lyme borrelia reside in an acidic endosome and that the use of a lysosomotropic agent augments the clinical activity of macrolide antibiotics in the treatment of patients with chronic Lyme Disease. In contrast, the efficacy of tetracycline in such patients is not affected by hydroxychloroquine.

Med Hypotheses. 2005;64(3):438-48.
Chronic Lyme borreliosis at the root of multiple sclerosis--is a cure with antibiotics attainable?
Fritzsche M.

Clinic for Internal and Geographical Medicine, Soodstrasse 13, 8134 Adliswil, Switzerland. markus.fritzsche@gmx.ch

Apart from its devastating impact on individuals and their families, multiple sclerosis (MS) creates a huge economic burden for society by mainly afflicting young adults in their most productive years. Although effective strategies for symptom management and disease modifying therapies have evolved, there exists no curative treatment yet. Worldwide, MS prevalence parallels the distribution of the Lyme disease pathogen Borrelia (B.) burgdorferi, and in America and Europe, the birth excesses of those individuals who later in life develop MS exactly mirror the seasonal distributions of Borrelia transmitting Ixodes ticks. In addition to known acute infections, no other disease exhibits equally marked epidemiological clusters by season and locality, nurturing the hope that prevention might ultimately be attainable. As minocycline, tinidazole and hydroxychloroquine are reportedly capable of destroying both the spirochaetal and cystic L-form of B. burgdorferi found in MS brains, there emerges also new hope for those already afflicted. The immunomodulating anti-inflammatory potential of minocycline and hydroxychloroquine may furthermore reduce the Jarisch Herxheimer reaction triggered by decaying Borrelia at treatment initiation. Even in those cases unrelated to B. burgdorferi, minocycline is known for its beneficial effect on several factors considered to be detrimental in MS. Patients receiving a combination of these pharmaceuticals are thus expected to be cured or to have a longer period of remission compared to untreated controls. Although the goal of this rational, cost-effective and potentially curative treatment seems simple enough, the importance of a scientifically sound approach cannot be overemphasised. A randomised, prospective, double blinded trial is necessary in patients from B. burgdorferi endemic areas with established MS and/or Borrelia L-forms in their cerebrospinal fluid, and to yield reasonable significance within due time, the groups must be large enough and preferably taken together in a multi-centre study.

PMID: 15617845

Plaquenil is a weak immunosuppressant, barely worthy of the name. I don't think that aspect of its pharmacology is of much relevance.

Edited by FunkOdyssey, 12 March 2009 - 03:30 PM.

[FunkOdyssey]

I'm hatching a plan to incorporate alternate day fasting / protein cycling / slight calorie restriction into my lifestyle. On Monday, Wednesday, and Friday, I will eat only a light breakfast of 88% dark chocolate and blueberries, about 350 calories and <10g of protein. So I will be fasting in an absolute sense for three 24 hour periods weekly and protein-fasting for three 36 hour periods weekly. I will consume most of the same supplements on the fast days, except that I will take fat soluble vitamins with breakfast rather than dinner (since there will be no dinner), and I will use a combination of micronized, tween80-dissolved resveratrol and nano-curcumin (AOR curecumin) at my normal lunchtime and dinnertime on the fast days to promote autophagy.

On Tuesday, Thursday, Saturday, and Sunday, I will aim for about 150% of my normal calories, or about 3500. Something like four 800 calorie meals and a 300 calorie snack should be feasible without pushing my capacity for digestion. This should result in a slight reduction in total calories for the week of about 10%. Hopefully my metabolism will slow a bit to compensate so that I do not lose any weight, since I am already very lean. If I do begin to lose significant weight I will make necessary changes to stop and reverse the trend. I will be doing my usual workouts on the "eat" days: tuesday, thursday, saturday.

I'm going to spend a week or two easing into this by skipping only dinner on what will become the fast days.

I have a commitment to myself to do everything within my power to facilitate my fastest possible recovery from Lyme, and as I become more convinced this could be beneficial I cannot in good conscience continue to ignore it, as inconvenient or difficult as it may be to implement.

I'm also dropping r-lipoic acid from my regimen so it doesn't interfere with the adaptation process. Hopefully that mouse research suggesting a long-term after-effect of lipoic acid supplementation is not applicable to humans (or I'm screwed).

Edited by FunkOdyssey, 12 March 2009 - 06:12 PM.

[Matt]

http://www.activamun...data_center.htm

You probably know about this already, but thought I'd share just in case