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Hello,
I am a chronic Lyme patient. My recent Metametrix results reported a positive protozoan infection “taxonomy unknown”. Based on my research and my very slow recovery rate, I am guessing it must be FL1953. I am not ready to drop $450 on the test. I am already over 15K in out of pocket expenses for treating this insidious disease. I finally convinced my doctor to perscribe Ivermetcin and I want to see if I have die-off. I asked him for the .6mg once a week dose (that I have been reading is effective) and my questions are 1. is this amount accurate and for how long must I take it? 2. Does anyone know a compounding pharmacy that will fill my script? My doctor said that if I can’t locate one, I will have to cut a standard 3mg pill in fourths, which will result in a higher dose than .6 and also it won’t be the exact amount since I will do it with a pill cuter at home. Any advice is appreciated.Hello
Sorry it has taken so long to respond. By 0.6mg i assume you actually meant 0.6mg/kg. For a 75kg person this is 45mg. 0.6mg is a very small dose that will not be effective. My doc uses 0.6mg/kg, once weekly.
I tried ivermectin alone for several weeks (0.6mg/kg once weekly) and did not find it effective. My symptoms slowly returned. I hear that some people do find ivermectin alone effective, but I dont think anyone can confirm cure from ivermectin alone.
In my experience, ivermectin must be combined with another drug. And I do not think that any single drug can cure PR. Combinations are necessary. This isnt so surprising because there are other protozoal diseases that require combination therapy, like malaria and Chagas disease.
If your doc is being an idiot and giving you a hard time, I suggest you simply buy horse dewormer, like this product:
Veterinary medicines are exactly the same as medicines labeled for human use. They are just a lot cheaper, typically. You will need a scale to dose this accurately, since its a paste. its 1.87% so calculate the amount needed for 0.6mg/kg body weight.
Ivermectin can cause some neurological side effects like mild hallucinations and visual disturbances. This effect is minimixed by taking it as a single large dose, instead of multiple doses over a few days. It takes time for the ivermectin to penetrate the brain, so taking it as a single large dose minimizes this effect.
Ivermectin is fat-soluble, so always take it with food. This is an advantage of getting the horse paste. Its already dissolved in oil, so I think it provides better absorption than the pills. My personal experience with both is that the paste is absorbed better and works better.
Below are some papers on ivermectin-toxicity and such.
I began treatment with horse ivermectin dosed as closely as possible to my weight. It is hard to get an exact dose with the horse tube so it would be better to remove it all and measure it. The second month I did 12 mg of stomectol, the human version of ivermectin. I ordered two months from India. When I began to run out, I cut back to 6 mg.
The first day on ivermectin I had overall body pain as though I had a virus but after that it was all up hill. In two months I was feeling close to well. I had been very sick so this was pretty miraculous.
A month after starting the ivermectin I began taking Low Dose Naltrexone to help boost my immune system and also to try to calm a thyroid flair. I had lost 20 pounds even though I was eating constantly and I could not sleep. By the time I got the LDN to 3 mg my thyroid seemed normal. In fact, for the first time in my life I had a normal (rather than sub-normal) body temperature.
I began the vegan(ish) low fat diet the same time I began the ivermectin. I have not had any red meat in 5 years but no meat at all in over a year, since starting the PR treatment. It is hard for me to not eat any eggs at all so I eat some egg whites. I also eat bread as the gluten does not seem to bother me, and some dairy.
I have gotten 3 orders (28 pints each) of raw frozen camel’s milk. It is supposed to have antibodies identical to human ones, only one tenth the size. It is supposed to be helpful for infections like lyme disease, allergies, auto-immune responses and even autism. I am not sure if it is worth the money or even if it works but I was off all drugs for several months while drinking it. If you get it from a good supplier it tastes just like regular milk but the first batch I got was pretty disgusting.
The low fat diet is critical. Whenever I try to incorporate nuts or seeds or any other healthy but high fat foods, I get a return of symptoms. I know fat=symptoms is related and wish I could believe otherwise because the diet is very restrictive. I try to keep my fat grams to 15 a day but often it is 20 and sometimes as much as 25. I feel the difference, believe me.
I was off stromectol/ivermectin for about 6 months doing well on just the diet. The only symptom I had was dry eyes which have always been with me since my tick bite in 2006. I am not sure if it is actually caused by PR or maybe another pathogen.
I lapsed in the diet and began to slide so I started pulsing stromectol again. I just take it now and then. The returning symptoms I have are stiffness in the morning and headaches – some dizziness now and then. I know when PR is emerging because my voice will go hoarse periodically.
I have to manage this disease because I can’t cure it. If any of you have not done the diet, you are missing out on feeling so much better. It is a pain but worth it.
I began to have trouble with stromectol after taking it everyday for several months. My eyes became very blood shot. I did an experiment taking the ivermectin with LipoPhos EDTA and grapefruit juice. That was such a punch my eyes looked like they had pink eye for days. I am just taking it now and then since that time. I like the idea posted above of 0.6/kg once a week. I may give that a try.
Dr. C. also prescribes alinia and albenza which I have and I may add those in if necessary. I could ignore my symptoms but I know they will get worse so I need to get back to where I was.
Hope this information is interesting to someone else.
Thats interesting about the fat. Are you sure its the fat? I believe its typically iron that causes symptoms to flare. Thats what I experience anyway.
Have you tried IP6?
I took Ivermectin( the generic Stromectol) for 4 months and also did the vegan diet for 4 months. My PCR form Fry lab came back “not detected” in May so I am in remission now. I have been feeling better than what I was but still not great. My doctor retested my C4a and CD57 NK cells and they were both abnormal. My doctor is telling me now that I have Lyme. I went to a second doctor about the Lyme and the results have not come back yet (from IGenex lab). I went back to eating meat so we will see how long this lasts.
Sorry I am so late getting back. I just forgot.
Yes, I am absolutely certain it is the fat. I wish it wasn’t – so much that I have cheated over and over trying to convince myself > “there must be some mistake, because nuts and seeds and avocado are good for you”!
It isn’t the iron because I eat a very low iron diet, having a CPS mutation that requires me to stay away from foods rich in sulfur, which happen to also be rich in iron. When I eat more than 15-20 grams of fat a day, I get a return of symptoms. Excess sugar in any form also increases symptoms but not as quickly. I was eating too much honey and maple syrup and got symptoms back.
When I was treating babesia with mepron and malarone I took those meds with massive amounts of fat. I was getting worse and worse and was ready to give up. Then I tested positive for PR. I began methyl cycle supplements to support my ability to detox, LDN to stimulate my immune system, ivermectin (alone) and the low fat vegan(ish) diet. Within two months I was a new person. I was in remission > a very tenuous remission because Pr is there always ready to come back. Not getting sick again is completely dependent upon what goes into my mouth.
I am coming out of another relapse. I was up every 2 hours all night long for over a week, insomnia, hoarse voice, anxiety. Then it dawned on me how much honey I had been eating all summer – making frozen yogurt with maple syrup covered with dark chocolate syrup and cherries. All home made and would have been good for you if I was a normal person eating in moderation but I was eating this almost every singe day! I was obsessed.
We thing we can’t live without a favorite comfort food. We crave it. We go into denial and eat it. We stay sick.
I have been back on the program about a week. I have to also take the ivermectin once a week and this time have added in Alinia twice a week. I feel better. I climbed two flights of stairs today without losing my breath. Now if I can just sleep!
So if you haven’t tried the low fat vegan diet – what is there to lose? Give it a try for a couple of months and see if you don’t get out of that black hole.
Here is another update. I posted a topic about the fat binders I bought. They are a God Send! This means I can eat a whole egg and two pieces of toast for breakfast, take one fat binder and have zero fat absorbed from that meal. This makes my diet MUCH more interesting and enjoyable.
Then I use the LipoPhos EDTA, which I also mentioned in that post. No PR symptoms. My voice has not gone hoarse since starting it. I don’t have any nerve pain. I can climb two flights of stairs and do so several times a day.
I am treating bartonella though and that gives me headaches. I am recovering very quickly. I am sleeping better already and the soles of my feet do not hurt in the morning. I would say I am very close to over that in just a month or so of taking Bactrim.
I saw Dr. Fry. I flew all the way to AZ. What a complete waste! He refused to do anything at all. He said he could not order a test from his own lab to check for bartonella. I had gotten a blood smear looked at by his lab. They said I had Substantial biofilm, stippling on my RBC and organisms showing motility. He had no comment about what those organisms were.
I believe I may have become re-infected with bartonella from one of our cats. Depending upon where you live, as many as half the cats have bartonella ; most asymptomatic but they can transfer it to us. One of our cats is diabetic and needs shots of insulin. I accidentally poked myself with his needles (which is used several times and refrigerated before being thrown out). I read 44% of cats with bartonella develop diabetes. I went to Seattle and saw a LLNP, who agreed this is bartonella and put me on exactly what I was taking – Bactrim.
There are so many infections out there!
…I began the vegan(ish) low fat diet the same time I began the ivermectin. I have not had any red meat in 5 years but no meat at all in over a year, since starting the PR treatment. It is hard for me to not eat any eggs at all so I eat some egg whites. I also eat bread as the gluten does not seem to bother me, and some dairy. … The low fat diet is critical. Whenever I try to incorporate nuts or seeds or any other healthy but high fat foods, I get a return of symptoms. I know fat=symptoms is related and wish I could believe otherwise because the diet is very restrictive. I try to keep my fat grams to 15 a day but often it is 20 and sometimes as much as 25. I feel the difference, believe me. I was off stromectol/ivermectin for about 6 months doing well on just the diet. The only symptom I had was dry eyes which have always been with me since my tick bite in 2006. I am not sure if it is actually caused by PR or maybe another pathogen. I lapsed in the diet and began to slide so I started pulsing stromectol again. I just take it now and then. The returning symptoms I have are stiffness in the morning and headaches – some dizziness now and then. I know when PR is emerging because my voice will go hoarse periodically. I have to manage this disease because I can’t cure it. If any of you have not done the diet, you are missing out on feeling so much better. It is a pain but worth it.
Hi Nefferdun, I know this is an old thread, so not sure you’ll see my reply here…
I’m also curious about the value of the low-fat diet. I see other explanations as to it’s efficacy or lack thereof, based on the overall diet people end up doing, and/or things they’re excluding and having problems with.
In the case of nuts, to me it seems unlikely that it’s the fat in the nuts that are the source of problems. Nuts are high in arginine – I believe Dr. Fry states that the PR love arginine and to avoid it. It could also be the seed proteins which can cause problems for those who have immune issues, and/or antinutrients notably phytic acid – depending on how they are prepared (e.g. if they aren’t soaked or sprouted to remove the antinutrients).
I’m curious if you’ve tried other fats and specifically what reactions you have.
In general I’m curious about this topic and wonder how to get feedback from a greater number of people who are attempting to eradicate PR via this very low fat vegan diet. My sense is there are other “explanations” for those who have good results, and I also get the impression that some people end up struggling with essential fatty acid deficiencies and imbalances.
Nefferdun, perhaps by this time you have further feedback as to how you’ve been doing with diet? Oops – I see you very recently gave an update… sorry I missed that before I originally submitted this post. Although it’s kind of unclear whether you’ve been doing the low fat diet all this time – and if it’s just recently that you added the fat binders (sorry if I’m missing something you already said – I find the small light-colored text on this site is a little hard on my eyes!).
If you have been doing the low-fat diet all this time – I’m even more curious since apparently your blood shows substantial biofilm still? Although wondering if this is a typo: ” They said I had substantial biofilm, stippling on my RBC and organisms showing motility”. Should this read *SLOWING* motility? I think that makes more sense in the context of the sentence…
Well, sorry to hear about your unhelpful experience with Dr. Fry. I guess I should go re-read your other post about the binders… The other question that arises from your follow up is – how long have you been doing the lipo EDTA? If it’s just recent, that might also correlate with your report of substantial biofilm. But if you’ve been using it for awhile, we might hope that this has been effective on the biofilms, correct?
Anyways – I’m just curious… And wish there were more feedback from PR patients following the low-fat diet and these different protocols… Does anyone here have suggestions as to how to collect more patient feedback – this forum or elsewhere?
TIA
-AzyaHello Azya,
Thank you for your comment on Nefferdum’s post regarding your experience of a low-fat diet for Protomyxzoa.
I’m just a voice out here but I appreciate this site, what keymaster Dan S. setup, and all the comments from Nefferdum and others. You all are helping us out here trying to puzzle this thing out!
On this site, not sure where to post, so in response to Azya:
I’m having similar experiences with what I call the
“zero-or-low-fat” diet
because like you, I find less fat dramatically reflects on my daily health.I aim for zero – 10 fat grams a day, not easy, nice to meet others who understand. It takes discipline and sometimes humor!
I aim for vegan mostly: once a week non-fat diary with my beloved espresso, a little rare fish, and try not to eat wheat,/gluten/bread, because I notice reactions if I do. I avoid sugar because intellectually I know I’d just be adding on another problem if I transferred how it feels to go without fat by adding more sugar into my diet. It’s not easy! Over time it does get better. Your body adjusts to what you let go of and feels better on what you notice works for it. It takes time. I’m amazed at how good vegetables taste sautéed in a little water (not sautéing in ghee, butter, or oil, as they add fat). I save my extra fat gram allowances for things that really matter, try not to add in everyday fat.
Though I’m still open to it, haven’t cancelled out the possibility, I haven’t seen benefits (for myself only), from staying low in iron, or a lowered iron protocol as Dan S. has thoughtfully detailed. It’s possible it’s helping and I’m not as aware of it, and that it could help others. Maybe we respond differently too. Different co-infections and illnesses along with PR could affect the outcome.
Would be interested also in ANY forum or way where more of us feel comfortable to speak up and share results of diet/other protocols on PR.
For myself, this is the first time I’ve spoken. I’m a little intimidated not knowing where to post on sites. Also I’ve wondered….if the nature of Protomyxzoa, PR, makes those who have it too sick -or less inclined to share and know the best place to do this.
Thank you to everyone who’s sharing their experiences, and to everyone:
Hello, we’re researching and looking for answers just like you.
You’re not alone out there.
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