Topic: I really believe this is the best treatment for Protomyxzoa
nefferdun
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My symptoms of PR are gone. My bart symptoms are going away too but PR is supposed to be incurable, so I wanted to share what is working for me.
First Ivermectin really knocks it down.
Second the low fat diet is critical. What has REALLY helped me is using Proactol Fat Binders, which is made of prickly pear cactus, -so perfectly safe. It binds with fat you just ate so it is easy to keep the grams of fat you absorb very low. I can eat things like egg yolk and even some cheese.
Third is liposomal EDTA. I use LipoPhos EDTA because it was recommended by Dr. Roberts, a heart surgeon who does methyl cycle mutation analysis.
The liposome is made from phosphytidycholine and P.Serene, the most essential fats your body needs. It encapsulates the EDTA and is reduced to a nano size that by passes the intestines, passing directly into the blood. The biofilm only see the fat and quickly absorb it because - you are on fat binders, your fat is very low, and the PR needs fat to build biofillm.
Trojan Horse - after being brought into the biofilm, as the fat is stripped away, the EDTA is exposed. This is just one of many studies confirming how EDTA destroys biofilm. It also weakens pathogens making them more susceptible to abx.
The EDTA binds with heavy metals too - of course. It will not get into your saliva so it does not affect the mercury in your teeth. It is not the best binder for mercury any way. If it has bound with a mineral and comes across a heavy metal, it will exchange the mineral for the metal. The metals keep us sick. The pathogens use the metals.
Anyway, I am at 95%. I am still treating the remains of bartonella but the PR symptoms are gone. I am on a vegetarian diet. Iron is a big part of biofilm and meat is full of it, especially red meat. If you have to eat meat, you should take an iron binder. There is a lot of toxins in meat so I think it is helpful not to eat it.
I really think this is the key to my recovery. I seldom take the EDTA now. I was taking it about twice a week for months. I almost never take Stomectol/Ivermectin - so I am using no drugs at all for the PR.
The fat binders are keeping everything in check. For breakfast I had one egg with the yolk so I took one binder. I feel the PR is so far removed, that I sometimes wonder if I could eat something high in fat and get away with it - but I don't go there. Too dangerous. I do eat home made pizza though and other things with cheese.
Anyone struggling with PR should give this a try. I wish the blood tests were not so expensive because I would like to see how much biofilm I have left. I test positive for PR and had substantial biofilm - that was last fall.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Catgirl
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Right on Neff! So happy this is working for you!
How much iver did you take when you were able to knock it down? I knock mine down, but once I go off the iver, it comes back.
Do you take any restorative fats, and if so, do you take them on the same day you take a fat binder?
Also, what do you think of someone trying just prickly pear instead of the Proactol?
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Im also wondering what the right dosage for Ivermectin is? Most say 12mg once a day, but klinghardt says 12mg 2-4 times a day. At first i thought it was a typo in his protocol or something, but he also mentions it in an interview with mercola: http://youtu.be/RkXqxRfG0jk?t=56m50s
Klinghardt now even makes it liposomal, for additional benefit. Perhaps i may try that once. But im not sure if it would work with the horse paste?
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ukcarry
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Congratulations, Nefferdun....I am so pleased that you get to eat a wider range of food now too because of the fat binder. Thanks for letting us know what you did that worked.
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lyme in Putnam
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I give u all credit for knowing your body so well, what u have, snd works for u. God bless.
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Ivermectin: "The main concern is neurotoxicity, which in most mammalian species may manifest as central nervous system depression, and consequent ataxia, as might be expected from potentiation of inhibitory GABA-ergic synapses."
Thoughts?
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In humans the Ivermectin does not cross the blood-brain-barrier due to the presence of P-glycoprotein. So with normal dosage neurotoxicity is not a problem.
"Significant lethality was observed in mice and rats after single oral doses of 25 to 50 mg/kg and 40 to 50 mg/kg, respectively. No significant lethality was observed in dogs after single oral doses of up to 10 mg/kg. At these doses, the treatment-related signs that were observed in these animals include ataxia, bradypnea, tremors, ptosis, decreased activity, emesis, and mydriasis."
So for dogs a 10mg/kg dose does not give adverse effects.
"The safety and pharmacokinetic properties of ivermectin were further assessed in a multiple-dose clinical pharmacokinetic study involving healthy volunteers. Subjects received oral doses of 30 to 120 mg (333 to 2000 mcg/kg) ivermectin in a fasted state or 30 mg (333 to 600 mcg/kg) ivermectin following a standard high-fat (48.6 g of fat) meal. Administration of 30 mg ivermectin following a high-fat meal resulted in an approximate 2.5-fold increase in bioavailability relative to administration of 30 mg ivermectin in the fasted state"
So i can only assume that the low doses we use (like 12mg) is considered safe.
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Haley
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Great to know nefferdun. I have followed your posts for a while. How long have you been on the low fat diet? It would be great to re-test, maybe Dr. F would give you a break on the price to help prove his theory about the low fat diet.
I did the low fat diet for about a year and then became very weak. I can't eat Quinoi and I'm not sure that I get enough protein with that diet. What were your sources of protein?
Did you replace minerals after taking EDTA?
Also, one practitioner told me to take lipase to breakdown the fats because that is what makes up the biofilm. She said that wobenzyme and others wouldn't really work on biofilm.
BobG - my doc told me to stop the Ivermectin due to that issue.
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CD57
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Neff has treating the PR made the Bart treatment effective finally? What do you use for Bart?
I wonder if the low dose ivermectin has hit Bart and that could be responsible for some improvement also? My doc thinks Bart has a parasitical component to it.
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nefferdun
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Sorry I am so late responding back to your questions. You can buy both the LipoPhos EDTA and the Proactol fat binders on amazon.com. There is another fat binder called Medical XLS (not sure about the letters) but it is more expensive. I don't know if prickly pear cactus would work as well although I have wondered the same thing myself.
When I first started ivermectin, it was horse wormer and I tried to take what was on the syringe for my weight. That is not very accurate and I am pretty sure I got more than I was supposed to. If I was doing it again, I would squirt it all out and measure it and then do the math to figure out what to take.
I ordered Stomectol from India, which is the human version of ivermectin. It took about 3 weeks to arrive. Then I took 12 mg tablets every day for about two months. By that time I felt much better but the stomectol was giving me headaches so I quit using it daily. Again, if I was starting over, I would pulse it 4 days on, 3 off. I don't know how anyone can tolerate as much as Dr. K is prescribing.
I began the low fat diet before I began the stromectol. It was March 2012. At first I was going to allow myself turkey and fish but then I decided to quit it all so I haven't had any kind of meat since April 2012. I was very strict following the low fat and it was hard.
When the holidays came around, I didn't want to make my family such boring meals so I added nuts to my loaf. In a couple of days I was sick again. Whenever I went over the 15 grams, I got sick.
I discovered the benefits of EDTA over a year ago. I was just doing one of my online searches. Dr. Roberts also recommended using it for detoxing heavy metals. He analyzed my methl cycle mutations. It tastes horrible but I took 4 bottles of it and bought 4 more bottles I didn't use up right away.
Last fall I was trying to get help from a local NP. She was a quack and rigged my metals test to come back very high. She was giving me IV EDTA. When she gave me the test, she told me to collect urine for half the allocated time and since most of the metals are expelled during the first few hours after chelation and I was collecting half as much urine, my lead and cadmium came back really high.
I did 5 IV's altogether when I discovered she was using the cheapest form of EDTA that leaches calcium from your bones - Magnesium Disodium EDTA I also read in several places that liposomal EDTA is just as effective as IV so I went back to the LipoPhos EDTA. It is the good form of EDTA that does not affect your bones and some believe actually help them - Calcium Disodium EDTA.
I stumbled across the fat binder the beginning of this year. I thought why not try them to see if they help. Since then I have not had any relapses of PR at all. Sometimes I wonder if I am cured of it. I eat cheese almost every day now. Low fat mozzarella only has 6 grams per 1/3 cup but recently I have been eating other cheeses as well. I just take the fat binders after I eat it.
I was taking phosphyticylcholine - the best restorative fat - the most essential fat required by the body - but I ran out and have not gotten more because it is in the liposomes. I bought some minerals but seldom take them.
You want to be careful not to take a fat binder after a liposome but the liposome is taken into the blood stream very quickly so a couple of hours would be fine. If you replace minerals, do it far away from the EDTA so it does not bind with them. EDTA goes through they system in a few hours.
Altogether I think I used about 12 bottles. These two things works so well, that I think everyone should try them that has PR or suspects they might have it.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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nefferdun
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For some reason after taking ivermectin for two months I was also getting very blood shot eyes from it and visual hallucinations - looked like smoke rising in front of me. I develop sensitivity to drugs.
Now I just take it very infrequently. When I saw Dr. F, although he refused to do anything for my bartonella, he told me to take the stromectol once a week. He was interested that the low fat diet was working for me because it supported his research - but he had no interest in the fat binders, which should have been a big discovery for him. Too bad for his patients!
I don't take the stromectol except every now and then for the heck of it because I have a script. I would say once every two months.
I am trying to erase the bartonella I have. As bart also hides out in biofilm the EDTA should help with that too. The big problem with a liposome is the taste. It is worse than Mepron. If I could bring myself to take it regularly I am sure I would get well much faster.
I also made liposomes out of Knotweed and A-Bart but again - just can't tolerate the tasted. I am not sick enough right now to force myself to take it. I posted something about how to make your own liposomes and I read Dr. K does this with all his cocktails. You can't make liposomal EDTA though - have to buy it.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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nefferdun
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They aren't selling the Proactol on Amazon right now. You can buy the XLS Medical but it is more expensive. The XLS has bigger pills and one package lasted me over a month. Here is another site for Proactol.
There are other companies selling prickly pear cactus and I wonder if they would work. Might be worth a try because they are a fraction of the cost but they do not claim to bind with fat so might be made from a different part of the cactus.
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nefferdun
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XLS Medical. I am doing a search to see if Listramine is the same thing and if it can be bought cheaper.
OK I AM EDITING BECAUSE I FOUND THIS AND IT IS THE NON TRADEMARK VERSION OF PRICKLY PEAR CACTUS THAT IS LESS THAN $10. SURE WORTH A TRY! ALSO I DISCOVERED PRICKLY PEAR IS GOOD FOR INFLAMMATION, AND ANTI BACTERIAL AND ANTI VIRAL. THIS SITE IS OUT OF STOCK BUT YOU CAN GET THE SAME STUFF ON AMAZON.COM. I JUST SAW IT SAYS IT IS THE SAME THING AS PROACTOL.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Just tried making some liposomal ivermectin horse paste. Not disappointed! The yucky taste of the paste is completely gone!
Also a good way to get some of the good fats inside your body, which act like the trojan horse that nefferdun talks about.
Perhaps this is the reason why Klinghardt reports success with his liposomal mixes (artemisinin, ivermectin, etc..)?
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Perhaps albenza can also be made liposomal? Since it is poorly absorbed by the GI tract without fat. Making it liposomal could increase absorption? Has anyone tried this?
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CD57
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why did Dr F refuse to do anything about your bartonella, Neff? How odd.
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springshowers
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Can you report your symptoms prior and after that makes you feel you have addressed the protozoan and biofilms
Thanks so much Love your protocol and thank you for links to products.
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springshowers
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Ps also have you been tested or suspect CCSVI or do you feel you have addressed things so well your veins are clear ?
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Catgirl
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Loving this thread. Thank you Neff (so much great info)!
I noticed allergy research's brand of lipophos edta has 40 mg of mag in it. I know mag makes proto grow. I saw the lipo forte but it is nanoized. Nanoized stuff makes me itch (don't know why). All that said, there are suppositories with edta (the good kind) and cocoa butter--what do you think?
Also, Did Proactol make you lose weight? I'm already thin and can't afford to lose much weight.
What is the difference between phosphatiydl choline and serine? I guess I need one of them for this to work?
S13, thanks for the iver info (with fat)! I can't take much fat, but will space it out to take it with the iver. How did you make the iver liposmal (can you please pm me recipe)? I wish we could make liposmal albenza (so expensive). If anyone has tried this, please pm me!
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The recipe is no different from making liposomal vit C. I just blend lecithin granules in warm water with the ivermectin paste for a couple of minutes and then put it in the ultrasonic cleaner for ~15mins.
I use about 3grams of lecithin to ~640mg of paste (=12mg ivermectin) and a small cup of water.
I take the lecithin liposomal ivermectin solution at the same time as my omega 3-6 capsules, so i have all the fats for the day combined in that single moment.
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Amanda
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Havent been on this site for a while. Good thread.
I just wanted to add that you have to be careful with the EDTA and iron/minerals.
Several months ago my red blood cells got very small, I was hihghly anemic, sever muscle pains difiiculty breathing. I have been struggling with Babesea (though after reading this thread, I really wonder if its not PR), so for the first couple of months I just thought my Bab meds were not working anymore. I had been taking EDTA (not liposomal even) every day for lyme biofilm.
Anyway, I ended up getting a bone marrow biospsy. My iron levels had gotten so low iron had leached out of my bones, and even my bone marrow did not have hardly any iron.
Because iron is the central atom of your hemoglobin, you do have to take in some iron.
I saw that neff took hers twice a week. I wish the MDs were as careful
Its so hard, you are supposed to avoid all these minerals and iron to decrease biofilm. But at the same time you have to make sure you don't suck your bones dry.
Trust me you do not want to end up having to do IV iron....Or end up like a friend of mine with osteoporosis at 45 yrs....
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nefferdun
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S13, that was adventurous that you dared to make ivermectin into a liposome. I took it once with the LipoPhos EDTA and got very blood shot eyes. Iver has a rare side effect of causing rupture of the cornea. I was scarred to death but it got better. You are right though - Dr. K makes all of his cocktails into liposomes.
Springshowers I haven't been tested for CCSVI - don't even know what it is. My PR symptoms were profound fatigue, headaches, mental confusion, inability to concentrate, muscle pain, frequent urination (4-5 times a night), stabbing nerve pains and insomnia.
Catgirl, it is too bad it makes you itch. Maybe what you bought was made with something you have an allergy to. Most of it is made with soy but Dr. K also uses egg yolks.
Amanda, You could overdo it. When you do IV's of EDTA, they give you minerals every 5th time. My body stores too much iron so I don't have to worry about that but other minerals can also be taken out. I took a mineral supplement when I was doing it more often.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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nefferdun
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I got the cheaper Planetary Herbals Nopal prickly pear cactus and it looks like exactly the same stuff as the Proactol. MUCH cheaper!!!
Although the EDTA did wonders, I feel the real benefit comes from the fat binders. You have to keep your fat low and this makes it easy. I hardly ever take the liposomes now and I am doing very well.
If you are feeling sick, they work best together. Your body needs the essential fats the liposomes are providing and they have killers in them. It doesn't just go into the biofilm. It goes into all of your cells.
You can make liposomes out of just about anything. The only problem, and it is a big one for me, is the taste. I think I might try Dr. K's method of making it with egg yolk. It tastes better to me.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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nefferdun
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For breakfast, I had an egg sandwich, which is about 6 grams of fat. Then I was still hungry so I had a granola bar - 4 more grams. I took 3 Proactol.
I don't know how many grams of fat each tablet will bind. They say up to 28% but that is no help. One site said 150 calories per meal or 450 calories a day. Another site said 450 calories of fat equals 50 grams of fat. That is a lot!
They suggest taking 1-3 with each meal. Assuming their figures were for the highest amount you could take, that would mean each tablet binds with about 5.5 grams of fat. That is much more than I realized. That would mean I got no fat at all from my breakfast. In fact, I should have just taken two tablets (maybe I will have another granola bar!).
This is why I am doing so well.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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springshowers
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CCSVI is blockages of veins in neck . Jugulars mostly and between neck and heart. Can happen in other areas of body like groin.
But these blockages are thought to be from biofilm build up over years and get more attached and solidified and take hold then block blood flow to brain and back. 1/3 our blood flow.
Treating biofilms and PR I have done well with and do low fat diet etc. But I got stuck in progress with left fatigue. So I was told to do this test to see if my veins are blocked and they are. I have had illnesses many years. Most my life and Lyme for 15 at least. I think this is the last area and most stubborn to treat in my case. Many Lyme patients are testing positive for this condition if veins. There are doctors doing surgical ballon treatments but some people just block back up over next years. They are saying treating biofilms before and after surgery to maintain success of procedure is key.
I'm trying to clear them without surgery but it's proving way more difficult than what I have done up til now which cleared a ton if it but this area is harder and more embedded and stuck.
Anyway. I hope that I can keep chipping away without intervention but considering procedure to lift fatigue It's supposed to be an immediate relief for most.
If you do a web search for CCSVI and Lyme you can find lots of material and videos etc.
The whole point is that the biofilms and bigs cause vascular issues in the end and that its a vascular disease
Also thought to play a part in all autoimmune disorders with infectious causes like MS and CFS and ALS etc
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Catgirl
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quote: "Last fall I was trying to get help from a local NP. She was a quack and rigged my metals test to come back very high. She was giving me IV EDTA. When she gave me the test, she told me to collect urine for half the allocated time and since most of the metals are expelled during the first few hours after chelation and I was collecting half as much urine, my lead and cadmium came back really high."
[/QB]
Neff, I did this too (mine wasn't quackery though). My doc combines edta with dmsa because it pulls much more metals out than the oral dmsa test (dmsa without edta doesn't reach some metals). I also did it for 6 hours (not sure what you did).
I was surprised how high my metals were even after chelating for over a year. Also new metals popped up too. No one could compare this test with just an oral dmsa (captomer) provocation. This form of heavy metal testing will always be higher because it is actually pulling out more metals. IMO, it's more accurate.
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droid1226
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Awesome Neff!!
Frye bug definitely is not incurable. Low fat and cholestyramine worked for my friend with terrible neurological and breathing issues. He thought it was babs but this protocol got him to 100%
He wasted thousands on Mepron. I think this issue should be addressed before the monster babs is taken on. It's so much cheaper and can make a difference quicker.
nefferdun
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Springshowers, I hope I don't have that blockage. Are there any other symptoms besides fatigue?
Catgirl, I can't tolerate DMSA because of the sulfur I guess although I do all right with Bactrim. I took it once and thought I was headed to the looney bin. The LP EDTA doesn't bother me.
Droid, I have heard about cholestryamine but have never tried it. A person could easily confuse PR with babesia and/or bartonella. I did too. If the Planetary Herbal Prickly Pear works as well as the Proactol (it looks identical) then a person could use these fat binders for about ten dollars a month.
The difference between just taking oral EDTA or even IV EDTA and taking it as a liposome, is that the liposome is more attractive to the biofilm because it is encapsulated in fat. Taking any liposome with a killer is helpful to get inside the biofilm where it can attack the pathogens. This makes a lot of sense to me.
Some LLMD's are using Artemisinin Essentials, which has artemisia and EDTA but in a very small amount. That is where I got the idea. Then I found out Dr. K has been doing this with his patients. I believe that is why he can be successful without a lot of drugs.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Have you guys been able to figure out the cycle length for your PR / other Frye bug / other protozoa?
How long did it take from the point of feeling better to stopping treatment? What about going back to work?
What do y'all use as a maintenance protocol for protozoa?
I've been feeling good for about 2 weeks. I know only time will tell, and my doctor warned me that I may crash every 6 weeks, but i just want to believe this is real recovery, get back to work, wean off these expensive supplements etc, and stop thinking about sickness, return to the fun, bubbly fascinating topics of conversations of B.I. (Before Illness). I would rather slide down a razor blade into a pool of alcohol than think about sickness anymore. blerg.
Catgirl
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It's so weird what we can handle. I can't tolerate bactrim, but fine on dmsa (lol)--go figure!
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nefferdun
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What an analogy SickSci!! Yikes.
These two things did the trick for me. I got much better on the ivermecin but like I said, I would relapse whenever I ate too much fat and too much was anything over 15 grams. It is really hard to keep your fat that low.
I believe the LP EDTA was a slow progression as it bound with the metals and then helped break down the biofilm. I am sure it helps a lot. Making liposomes out of tinctures etc is the way to go. Makes so much more sense.
There was a big leap when I began the fat binders. I don't even worry about the PR any more although I do keep track of how much fat I am eating. I used to get stabbing nerve pain with it but that has been gone a pretty long time.
Catgirl, it is funny what we can tolerate and what we can't.
If you are treating PR, I would seriously try the fat binders. Just buy the cheap ones first. I don't know if there is any difference between them and the more expensive ones but why pay $50 for them if you can probably get the same thing for $10 - 13.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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CD57
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Can you really make your herbal tinctures liposomal? Where is your thread/post on that?
I wonder why we never see posts from Dr K people on here. Perhaps they have their own board?
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quote:Originally posted by nefferdun: S13, that was adventurous that you dared to make ivermectin into a liposome. I took it once with the LipoPhos EDTA and got very blood shot eyes. Iver has a rare side effect of causing rupture of the cornea. I was scarred to death but it got better. You are right though - Dr. K makes all of his cocktails into liposomes.
Yeah my protozoan infection doesnt seem to respond that hard to ivermectin. It only stuns it slightly, so i was not afraid to try the lipsomal. I do get the bloodshot eyes though.
Now liposomal albendazole, which i tried to make yesterday, is a whole different story! My god, ive never reacted much to any kind of antibiotics (aside from mepron), but this was freakin brutal! I couldnt sleep until 8am, felt horrible, nauseous, muscles aching, fatigue, dizzyness, confusion.
But now the day after i see a slight difference in neurological functioning. Positive that is. Also some of the noises i keep hearing in my head have lessened! That has never happened before
So liposomal albendazole; good way to get absorption without a high fat meal.
I think i begin to understand why mepron never did anything for my neurological symptoms. Its because the protozoa is hiding in the brain! And mepron doesnt go there very well (and neither does ivermectin).
So it might depend on the kind of protozoa you have which treatment works and which doesnt. I think i have one of the Fry variants, instead of the FL1953 bug. Or perhaps some kind of rare/unknown babesiosis.
Next week i will do a trial with alinia, since that also gets in to the brain.
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I have a question for everyone. Does anyone get leg burning symptoms? I think it is bart but does the protozoa manifest its symptoms in this way. Leg pain also in my calves and thighs.
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Cards, not sure that is a proto symptom.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Is anyone familiar with how exactly Nefferdun implemented her protocol? She seems to have not been on here for a while.
She says earlier in this thread that she took 12 bottles altogether of the EDTA? I think she meant the 4oz bottles, since she also said twice a week for months, so that would be 3 months.
And then she watched her fat intake like a hawk, taking the fat binders if she was taking in more than 5g? Sounds like she starting the fat binders at the start of 2014 and ended sometime in October of 2014 based on her last post here:
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