I think the issue could be that you are interpreting people saying “bi-weekly” as being twice a week, when what they are meaning is once every two weeks (easy to mistinterpret this since both interpretations are “correct”).
People are typically taking rapamycin either once a week, or once every two weeks… and most people are starting really low, eg. 1mg/week and then slowly working up increasing by 1mg per week until they see some sort of side effect.
I think you want to take a few weeks off and then start slowly again…
Such body reaction is most likely from overdosing on Rapa. If you had edema in your legs, kidney panel blood work would be something that you need to do to make sure there’s no kidneys damage.
Thanks for the quick response and the heads up - I will slow down on the Rapa for sure. No edema in my legs, just the sensation of swelling last night which has passed. In reality my feet look fine.
Just as a point of comparison - @LaraPo above takes 1mg/day (no EVOO or GJF) for preventing organ transplant rejection… you’re taking about 35 to 50 times higher a dose than she is… not a good thing!
Okay just to confirm, for 1 week only I have so far taken 10mg in total. The last dose was three days before I felt unwell. So GFJ and EVOO make that much of a difference?
EVOO (or other type of "high fat " meal can boost bioavailability by 30%), then the grapefruit juice can do an additional multiple of 350% to 700%… ontop of the 30%.
So - your 10mg in a week could equal 13mg X 3.5times, or 13mg times 7X, so you could be dosing anywhere between 45mg to 91mg… which would be a record high for this forum I think (especially for a woman, and who may be much lower weight than the average guy).
Your immune system could be compromised right now - we don’t know how long it takes high dosing to cause this exactly, but be careful this next week, avoid crowds, etc…
Folks - don’t try this at home. We don’t want anyone getting hurt!
Certainly not to freak anyone out, but something to consider when figuring out a target for your peak serum levels: most adult humans have a whole list of latent viral infections that are generally no problem as long as your immune system is in working order. There are certain latent viral infections that are specifically activated by rapamycin at certain peak serum levels. I imagine this is probably not a super common thing to occur in weekly rapa doses such as what most people here are doing, but it may be a reason to avoid the feeling that “more is better” and attempting megadoses of rapa. We’re looking for a sweet spot where mtorc1 is suppresed but not mtorc2
Thanks for everyone’s concern, I am feeling much better today but will be cautious. What a valuable resource this forum is, I appreciate your advice and guidance.
I’ve just added a new warning to the site, as I’m concerned that you and other people could be jumping into extremely high doses of rapamycin accidentally, with potentially very negative health consequences.
“BUT, rapamycin is a serious drug that can have serious complications, depending on how its dosed and other factors. This is not a risk-free drug. If you are considering using rapamycin be SURE to spend a few months reading all the literature on it so you can make an informed decision, ideally working in concert with your doctor. Don’t just rush into taking rapamycin because you heard one podcast mention it.”
@Rapa4mecfs : Do you have a link to the Dr Green’s Lyme guidance? I have not seen it. Before I got sick (late 2018), I was a world traveler, spending lots of time outdoors hiking, etc. I took an IGeneX Tick Born Illness test in early 2000. I was positive for 3 different kinds of Lyme (including West Coast, East Coast, and European types) and Borreliosis and negative for the rest of the tick illnesses they test for. I did ~4-5 months of Lyme treatment (via a Lyme literate Dr.) and did not improve, so we moved on to other things (still not improved - but thankfully not getting worse).
[edited to make clear I was responding to @Rapa4mecfs who mentioned Dr. Green and Lyme not @rapadmin]
Just so you know I have done months of research and my doctor had suggested 6mg weekly.
The confusion was the mention bi and tri weekly dosing posts and talk of the half life in humans being the equivalent of 2 days when compared with the mouse studies.
Considering this information, and the fact that I am in excellent health and also very fit and strong, adding an extra two 2mg doses through the week did not seem that extreme to me.
I hope this helps. I know that dosing is not settled science and am perfectly okay that I might have found out what can happen if I take too much
I like it that people are not scared of trial and error here, the level of complexity in this topic means that only a certain group of people are going to self-select to be here.
Considering this I hope I haven’t caused any lasting concern beyond perhaps clarifying the meaning of bi and tri weekly in the dosing posts.
I hope you don’t feel you need to dummy proof this forum on my account
I’m not criticizing you. My concern is that if you did everything “right” (and I think you did… you researched, worked with doctor etc) and still stumbled into taking a dose that could be 10 times higher than organ transplant patients take - I’m concerned that many people who are not nearly as engaged and thoughtful as you could easily make the same mistake… with worse results…
Can you think of anything we might do to help prevent these types of mistakes in the future… do we need to summarize some key information in more places, etc., more warnings, etc. so people don’t miss it? Other ideas? Please, anyone, I’m open to suggestions and ideas. We don’t want anyone to accidentally hurt themselves on rapamycin.
As I mentioned, my confusion was from the dosing posts mentioning bi and tri weekly doses. It also took some time for me to figure out what GFJ and EVOO even stood for let alone take seriously the dramatic effect they might have. To be clear I did read about that, but when everyone seemed to be saying they were taking those with the Rapa it didn’t seem like a big deal.
I am also not the average bear and so maybe don’t worry too much. I react differently to things than most people and so am used to testing limits. Coffee for instance is something I cannot drink at all, yet I hear everyone else rave about it’s benefits. In that case I didn’t become aware that coffee was causing my insomnia when I drank one cup on waking for many years. It took me working in a job where I was drinking 5-6 cups a day and nearly went mad before I cut coffee out completely and discovered that one morning cup was still too much. Maybe this isn’t the best example but just one that came to mind.
I am on a waiting list to be assessed for high functioning autism and that plays a factor too. People sometimes find me arrogant, unfortunately, as I am not the best at following experts advice. In reality I am the first person to admit that I can be a slow learner. I am not stupid - I just have a mind that requires me to learn things myself by trial and error. It gets me in trouble sometimes, certainly, but once I know something I know it from experience not only because someone told me so. Lucky that this curious cat has so far had 9 lives.
I needed the break today anyway and the fever etc have all passed. I just finished listening to a very interesting podcast by Dr. Gundry on protein requirements. My doc has been saying to stop IF and up my protein intake (not for any other reason than that this is what he is doing for longevity now) and I must admit I am somewhat relieved that Dr. Gundry has different advice. It sounds like EVOO is going to be the next thing I push the limits of ingesting
In reality I am pretty cautious in life - I wouldn’t touch tons of things that other people think are safe. We all have to choose our risks I guess and hopefully my little experiment (gone wrong) with Rapa has at least made me a useful guinea pig for the readers here
Looks like the whole confusion was mostly about vaguely used “biweekly” word. Even dictionary gives 2 definitions: once every two weeks and 2 times a week (which cannot be correct). However, when translated into a foreign language (tried Russian, Polish, Ukrainian, French) - it’s more straightforward and translates as “once every 2 weeks”. There’s another word in English for “2 times a week” and it’s semiweekly. It can be helpful, especially when applied to dosing, to use the right words imo.
There is a study on stevia (liquid not powder) that was done in 2017, that killed so-called persister cells. The specific brand is nutramedix.(Authors have no ties with nutramedix). Stevia performed better than doxycycline, But that was in vitro.
Stevia was compared to doxycycline, cefoperazone, daptomycin, and their combinations. Our results demonstrated that Stevia had significant effect in eliminating B. burgdorferi spirochetes and persisters. Subculture experiments with Stevia and antibiotics treated cells were established for 7 and 14 days yielding, no and 10% viable cells, respectively compared to the above-mentioned antibiotics and antibiotic combination. When Stevia and the three antibiotics were tested against attached biofilms, Stevia significantly reduced B. burgdorferi forms.
A doctor Marty Ross from Washington State, has stated that he does not find it effective in most of his patients. He suspects that it is an absorption issue.
I would try it, were I afflicted. It is a natural sweetener. There seems to be no side effects. I would try to make a liposomal stevia concoction.
Some essential oils (at low concentrations) have also been tested in vitro.
For comparison, 0.05% cinnamaldehyde, the active component of cinnamon bark essential oil, sterilized the LD spirochete at stationary phase and garlic essential oil was successful in killing of all forms of Borrelia at a concentration of 0.05%. These results were confirmed by the absence of bacterial regrowth after 21 days of subculture and correspond to results obtained by culture treatment with 5 µg/ml of triple-drugs daptomycin + doxycycline + cefuroxime
@JeffSmith Sorry I didn’t see this sooner. I’m on a Facebook rapamycin group and a member there gave a lengthy account of their appointment with Dr Green and mentioned that he saw rapamycin as potentially risky with Lyme. The thinking seemed to be that suppressing immune function may allow Lyme to get a stronger foothold.
