Catgirl
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posted
So far, they haven't found anything that absolutely kills proto off. I think killing parasites helps knock it back though (just my opinion). Babs is a parasite, so I imagine whatever is used to kill babs might also help fight proto. I would think the beyond balance would help.
The best way to knock it back is through diet. Cut the fat, and animal products (arginine), and then your meds for all your other co infections will have a better chance of doing their job. Anyone with recurring co infections might want to try this. It's the easiest way to tell if you have it, and IMO, worth the effort to feel better.
After all, it's just food. We still get to breathe air, see our friends, family, pets, football, art, etc. I would rather change my diet than allow proto and my co infections to make me suffer further.
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-------------------- 13 yo DX PANS/Tourette's/Asperger's/ADHD treated for Igenex positive bartonella/IND lyme with 2 years of abx treatment. Weaned off abx April 2013 at 80% improvement. Continuing with Buhner bartonella/babesia protocols. Aug 2014 99% improvement. Posts: 265 | From Canada, Ontario | Registered: Jul 2013
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Catgirl
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posted
Nefferdun posted this on another thread (best description I've found):
You may have insomnia, bladder irritation, irritability, anxiety and twitching and think it is bart. You may have hot flashes, sweating, headaches behind your eyes, body pain, profound fatigue, inability to concentrate and air hunger, diagnosing babesia. However with babesia you would be oversleeping, not insomnia.
However now and then you lose your voice, talking like there is a frog in your throat. You get nasal congestion, perhaps thinking you have developed an allergy. Sometimes you get a stabbing feeling in one tooth like you have a bad cavity but the dentist doesn't find anything. In winter your hands, feet and nose are so cold you just can't keep them warm. You get stabbing or tingling nerve pains in various parts of your body.
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Rivendell
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Thanks everyone.
Well, of course there could be other good explanations for the following symptoms I have, but maybe it is proto:
Post-exertional malaise, head and eye pressure, tippiness at times (but also have othostatic hypotension, so maybe that causes it), etc.
but these symptoms maybe are unique: if I don't take antibiotic I get ho****, frog in my throat, have had the teeth pain,
And, more importantly, when I went off of Zithromax for 1 month, I got sores on my head.
The sores are still there even though I'm back on Zithromax.
Of course the sores could be Bart, which I have been diagnosed with.
Well, the herzing with Bab-1 has been unbearable, so I have stopped it for awhile until I hear back from LLMD.
nefferdun
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posted
It does sound like PR especially the sores on your head (which I never had), the horse voice and the tooth pain.
It isn't exactly a protozoa.
Now people who see Dr. F are talking about PR and the "variant". The people with PR respond to ivermectin while those with the "variant" respond to a combo of drugs including ivermectin, alinia and abendazole.
I get the impression there is more than one variant because some of his patients are taking anti malairal drugs like malarone and Plaquinil.
I responded well to ivermectin and the diet. Like catgirl said, the diet is critical. Very funny, what she said - "it is just food. . . we still get to breath air. . . ."
That darned diet is so important.
-------------------- 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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Rivendell
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Thanks Nef.
I'm sure there are variants with every microbe.
Is Ivermectin a prescription drug?
I am basically vegetarian.
The problem I have is that I have hypoglycemia. Have had it all of my adult life.
If is very difficult to manage. But fat is very important in controlling the blood sugar level.
When I don't get enough fat, I feel so much worse.
So, I fix one thing, and make another thing worse.
Catgirl
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posted
Rivendell, I've had hypoglycemia. You'll never guess what's getting rid of it for me--parasite treatment. It's so much better now. The nervousness, intense hunger, palpitations, and weakness (like a kitten) that came with it are all gone.
At this point, it's no surprise to me that parasites are responsible for many if not the majority of the issues lyme patients have. Just look what those of us with proto are taking: parasite meds.
There's a fine line with fat here. I don't have to go nearly as low on it as Dr. F recommends. I cut it back to find my tolerance level. I eat a little cheese (space it out), a few nuts and a little meat mixed with lots of grains, and veggies. You have to cut the fat first to find your level though. Once you feel better, you'll know what it feels like when you do up the fat, then you will find your level (the proto symptoms will come back).
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Rivendell
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Thanks Catgirl,
The Bab-1 was difinitely killing parasites.
But it was making me way too ill. I'm taking a break. Waiting to hear from LLMD.
Good to hear that the parasite treatments took care of the hypoglycemia.
Your diet sounds similar to mine, except for the meat. However, I have been eating a lot of "cornies" snack food lately.
I have been feeling so weak, and that snack seems to help to pull me out of it.
Trying to figure this out. I eat lots of salt to help with orthostatic hypotension, take florinef and herbs for this condition.
Yet the cornies are part of what make me stronger, along with decaf green tea and licorice root.
I also eat cheese, but I seem to need the cornies.
sweating, headaches behind your eyes, body pain, profound fatigue, inability to concentrate -yes again.
sometimes you get a stabbing feeling in one tooth like you have a bad cavity but the dentist doesn't find anything. In winter your hands, feet and nose are so cold you just can't keep them warm. - YES
I will not diagnose myself, but perhaps this is what has been keeping the Babesia symptoms present for me.
I was doing very well, but lately I have been slipping back into the wooziness. And my tooth problems are out of control. I get tooth pain, gum pain and irritation, I've lost 2 teeth in 3 years. I know there will be more coming out. HAd my amalgams removed and it seemed to do nothing.
I can FEEL the infection in the sinus/jaw/ear area. My ears are hopelessly clogged. For all of the improvement I've made, the majority of symptoms above the shoulders have stayed the same (NEuro and physical) I've been treating with Mepron for almost two years. Increasing the dosage every 8 months or so. Could this be Proto? How can I find out without spending money? I have none.
A no fat diet would be incredibly difficult for me. I eat half an avacado /day and a lot of protein rich meats (mostly fish and chicken). I cannot afford a special diet. I also think that this diet would leave me incredibly hungry ALL OF THE TIME. I am hungry as it is, on the protein rich diet.
Don't we NEED fats? I know we do. How is health maintained without fats and protein for strength? I can only eat so many carrots and quinoa. I'm not opposed to it, but perhaps this is a lifestyle that wouldn't work for everyone?
I am Italian. I've been raised on rich, hearty foods. It is in my blood. WHen I smell garlic, I salivate. I'd give it all up in a second if I knew it would work.
Plus, it is more expensive to eat this way, is it not? I currently spend about 20 - $25 on myself/week for food. That's pretty cheap. And even being that thrifty, I still wind up in debt at the end of every month.
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Catgirl
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Lymeboy, you can easily find out if you have it simply by reducing your fat and meat/animal products. Try fat first and see how you feel. Everyone is different. Some people feel better in 3-5 weeks or more. I felt better in 3 days. And even better once I cut back on meat. I eat low fat meat, and hardly cook with any oil.
There are others who are already at a low weight and can't afford to lose more, so they take protein powder. It's the only way to make sure they are getting enough protein.
That woozy drunk feeling sucks. It's proto on me. The key is to hit parasites and reduce your fat so you can kill them. Reducing fat starves proto, and knocks it back. Less biofilm means your meds/herbs can get through to do their jobs.
I eat fish and chicken, I just make them a smaller portion on my plate. I up the grains and veggies instead. It gives me a lower fat ratio of food. I also have UNOs gluten free pizza. I just don't eat the whole pizza anymore (flat pizza). I eat just a few pieces and then have some greens, and a sandwich with no added fats on gluten free bread.
I also eat reduced fat chips whenever I have a couple of sandwiches and greens. Just 5 chips with the sandwiches and greens. I used to eat half a bag to a whole bag. 5 at least gives me some crunch. It's all about balance.
Unfortunately, most docs don't know enough about proto. They are still learning as there are so many varying things that can through them off when it comes to diagnosing. It's easier for the patient, than the doc, IMO. Keeping a journal helps.
You can try cutting the fat, upping your greens, grains, veggies, and adding some protein powder if you need to. If you feel better, you will have your answer. It's better to know than struggle for years feeding it (if you have it).
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Catgirl
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I forgot to mention that I've been good with the diet before. Then I cheated and proto slowly gained ground again. But it's not the end of the world if you cheat. It's sort of being good, then cheating. Not crazy cheating--just a little. Then being good, then cheating. At least, that's my story.
When I'm good, I feel much better though (It's worth it). People with proto just have to find some balance. My guess is tons of lyme patients have it. It is difficult to detect.
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lymeboy
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I have Ivermectin, Biltricide Alinia, Albenza and M Pudica. I could get through about 6 months of treatment with what I have. I'm hesitating until I find out more about treating parasites. I understand it's tough on the liver. Mine's already working pretty hard with Mepron and various other meds. I don't want to make things worse. Maybe I'll start by cutting some fats down, and go from there.
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Catgirl
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Rivendell, are cornies corn nuts? Sorry, I'm clueless (lol)! If so, maybe it's the salt making you feel better? I eat tons of salt (salt freak). It's great for my adrenals. If you love cornies, I would still eat them, just a lot less of them if they have fat in them.
Check out THE PARASITE WARRIOR'S THREAD. Parasites are a HUGE part of lyme and company (they affect everything, IMO).
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Catgirl
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Lymeboy, I know it's tough trying to decide what to do. You will figure out what's best for you.
I'm going to bump some threads to help people who don't know about proto. There's much more info in them.
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Reading thread has actually made me feel so much better, as I think I have found the answer to what has been going on with my son.
He had terrible classic lyme symptoms that we treated successfully with photon therapy, but there were some low grade problems that still bothered him.
Head sores, random ho**** throat, stabbing pains, and stuffy nose, as well as sore legs and sometimes arms.
We had been treating parasites with some success, but having to take it slowly.
Recently he got much worse again. We did EAV testing and couldn't figure it out lyme, mold, babasia and bart all tested negative, but my son is feeling terrible.
The thing that really gets me is that my son is under weight so recently I added way more animal products, meat and fats. I upped his omegas, added coconut oil to things.
Now I'm thinking I may have found the answer.
Any tips on the diet?
Catgirl I saw you mentioned arginine. So is soy out?
Any thoughts would be appreciated.
Posts: 372 | From british columbia | Registered: Feb 2012
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Catgirl
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I would avoid the soy. Here are some threads on proto (food tips included):
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Catgirl
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quote:Originally posted by lymeboy: Maybe I'll start by cutting some fats down, and go from there.
Good idea. :) Also, if you are going to stay on high dose abx, I would try parasite herbs and see how you feel. I did parasite herbs and felt better.
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Rivendell
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So soy is high in arginine?
What about whey?
Arginine would be present on all protein I would guess.
Catgirl
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If you don't have any problems with soy or whey as far as proto symptoms, then go for it. I also eat a small amount meat, so I don't need the added arginine. There's enough soy in my supplements too (I don't want or need more--processed).
Unfortunately, there is no one answer that is an across the board answer for everyone. Kinda like treating lyme. We all have different symptoms, issues, etc. I have already discovered how much fat I can tolerate without proto dragging me down. Everyone is different and must find what works for them.
There are so many things with arginine, it's difficult to avoid it completely. The point is to cut back.
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