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» LymeNet Flash » Questions and Discussion » Medical Questions » Best Info on FL1953-Must read if you have questions on this protozoan.

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Author Topic: Best Info on FL1953-Must read if you have questions on this protozoan.
hadlyme
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http://www.iadvocatehealth.org/protozoal_infection0.aspx

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Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again!

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nefferdun
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I have read that and it is very helpful. McDougal DOES allow wheat. I have three of his cookbooks. F says he believes it is arginine rather than gluten that disturbs patients.

Here is a site with the lysine/arginine in foods. You will see that meat is extremely high so eating lean to get less fat is not going to solve the problem of excess arginine. Nuts and seeds are also high. Meat is also highly acidic and even if you buy organic grass fed beef , it has more toxins because it is the top of the food chain.

http://www.sandiegohomeopathy.com/downloads/Lysine_Arginine_Foods.pdf

I think egg white is the least harmful cheat. There is no fat in the egg whites and the arginine is about half. Dairy has been linked with cancer in adults and type one diabetes in children. Goat's yogurt is probably the least harmful dairy. But of course it is best to stick with the diet if you can.

The McDougal diet is based on "starch". That is what he says.
This can throw everything we have told each other upside down. People think they can't have w.w. pasta, corn, rice or beans because of yeast, so they feel they will starve on the diet eating nothing but steamed vegetables.

We have to approach the McDougal diet as though we are also diabetic and eat low to medium on the GI. That will keep the yeast under control.

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old joke: idiopathic means the patient is pathological and the the doctor is an idiot

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seibertneurolyme
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I have expressed my concern about a low fat diet in numerous other posts so won't repeat myself.

Will just add 2 comments.

If you are avoiding eggs then it is very unlikely you are getting sufficient choline in your diet -- especially if you have lyme and babesia. Choline is found primarily in eggs and lecithin. Phosphatidylcholine as an IV supplement is one of the major ingredients in the old P.K. protocol along with IV glutathione. That combo reversed hubby's high GGT and fatty liver.

Choline/phosphatidylcholine is one of the good fats needed for proper liver function and also to support the myelin sheath around your nerves.

As to arginine -- hubby added that supplement to his regimen about 6 months ago based on suggestions from Buhner. It has been the best thing he has ever taken to improve blood flow to the brain and help with brain pressure/swelling type headaches. But you can't take arginine if you have any type of herpes viruses.

If FL1953 really does feed on arginine then I can only conclude that hubby does not have that pathogen. He is now on day 48 without antibiotics/antimalarials/antiparasitcs and while gradually symptoms are returning he has not had a major relapse. He ran out of the arginine for a couple of days and missed it so much he bought some at a local health food store rather than wait on it to come in the mail.

This is not medical advice, just my opinion based on hubby's experiences.

Bea Seibert

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nefferdun
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There is 15 grams of fat allowed in the diet. People consume the good fats you are worried about in tiny amounts. An omega 3 oil capsule is at most one gram. Flax is the best choice for omega 3 because fish oil can have mercury. Taking flax oil in capsule form you would be getting a tiny amount so you do not need to worry about exceeding the 15 gram limit.

One TB of flax oil is 16 grams of fat. I suppose you could saute with a little of it rather than dose it in capsules. Or you could just use a little ground flax in your food. Most of the other oils are higher in omega 6 which is inflammatory. Chia seed is very high is omega 3 and protein. All you need is a teaspoon.

You don't really need eggs to be healthy. Our blood is already hypercoagulated so we don't need animal products that are going to clog our arteries.

I am surprised no one has mentioned B12. It is the only thing lacking in a vegan diet. As many of us with MTHFR mutations cannot assimilate it well anyway, we need to supplement irregardless what we are eating.

But even if you eat mea,t that does not mean you are getting B12 in your diet because most meat is not grass fed where they pick it up in the healthy soil. Slaughter animals spend at least the last part of their lives in filthy feed lots.

More than likely when someone get's what they feel is the go ahead to consume grass fed organic beef, Dr. f is thinking it is occasional - not everyday. Who can afford it everyday?
Red meat, no matter how it is raised, is hard on the kidneys and diabetes are advised not to eat it. I am so sick of the meat argument. You eat it because you want it, not because it is good for you and you need it. I want to get well more than I care about what is on my plate.

Milagro, you need to add rice, quinoa and legumes to your diet or you will starve. They are very filling. They are also really good when you experiment with spices etc. You can have some whole wheat pasta now and then but the mainstay should be black rice, brown rice, wild rice quinoa, yams, lentils, beans and fruits and vegetables.

Most people can tolerate soy and it is also part of the McDougal diet. There are a lot of prepared soy foods that are low in fat and really good. You can substitute it for meat until you learn more about making your own versions.

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old joke: idiopathic means the patient is pathological and the the doctor is an idiot

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MichaelTampa
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I did sort of this diet for a while, I misunderstood and targeted 15% of calories as fat, not 15 grams. So I was probably at 30-35 grams of fat. It helped enormously. Over a period of 6 weeks the low fat took it's toll, I do not believe it is healthy long-term, and was time to get off.

But, again, biggest herx I've ever had with any treatment was from this diet. No doubt about its power and by the way I did not move backwards after going back to regular healthy high-fat vegan eating (nor am I over the hump yet either).

Also, FYI, oatmeal is too high in fat for those trying to do strict 15 grams of fat a day, and sauteeing flax oil is a no-no. If you're going to saute with oil, might as well use a cheaper oil that tastes good (not yucky-tasting flax) because you'll destroy the stuff that makes flax special by heating it.

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hadlyme
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I have always understood this to be using no oils of any type. I will steam or bake everything. I can't believe its not butter might be bad, but it has no fat grams... I spray it on all veggies for flavor!

My kids raise grass fed cattle. Doc knows I need my protien from meat or I will get headaches. I watch that I only eat small portions and not everyday.

I think with any of this, if you're aware of what you're eating, it's a first step. Milagro.. if you go shopping, look for low fat numbers on things... it's easier than you think.

Do I follow it every day? No... but do I live a low fat lifestyle as a whole, yes. I can feel icky when I eat a lot of fat grams and sugars.

The arginine is watching the ratio of it with lysine. Not totally no arginine.

Reading this article all the way through will give one the understanding of how magnisium and things we thought were good for us, really aren't.

But again, we need to all do what is best for our bodies and mind. Find what works. For me, this works and makes sense as my dad and aunt died of ALS. With the studies he's doing, I'm sticking close to him.

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Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again!

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trubeee
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I haven't read all the posts nor the whole article (can't) but I don't think he addresses how to treat the bug. I'll have to do a search here later to see if anyone is being treated for it. Thx for the article.
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hadlyme
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In the article it states that everyone reacts differently to different drugs and that it's not a 'one size fits all' type of treatment.

My treatment is no different than when I treated babs.

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Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again!

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trubeee
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Thx!
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nefferdun
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Thanks Michael. I forgot heating flax is not good. Actually I do not understand why the McDougal cook books "saute" in water. Why bother. If you are making soup, just throw it all in there and let it boil. I used to do that and I never noticed the difference.

The McDougal cookbooks use oatmeal. Half a cup of dry oatmeal has 2. 5 grams of fat. That is not too bad for one meal. I eat it with blueberries.

http://nutritiondata.self.com/facts/breakfast-cereals/1597/2

If high arginine is not a problem and all you have to worry about is the ratio to lysine, then why not just supplement lysine?
We might not have all the answers. F might not either but he does know that this thing dies on a low fat vegan diet so that is what he recommends.

i made lentil stew according to a recipe I got from Lauralyme and it is delicious. I am going to bake some cornbread with applesauce and or banana instead of oil.

Here is a site that explains how to make a Seventh Day Adventist vegan loaf, which they are famous for. It sounds adventurous. If we could get into this we might come up with some exciting discoveries.

http://www.veganlunchbox.com/loaf_studio.html

From what I read you use 2 parts protein (beans, lentils etc) to one part carb (rice, quinoa etc). They use nuts/seeds for fat and more protein but it is fine without it. It just gives it a much chewier texture.

I am making some pretty good loaves but this gives me even better ideas. You don't need to saute anything because it gets cooked again anyway. You can add cooked veggies - leftovers.

I was very confused at first especially with my brain fog. I made some really horrible concoctions and many of the recipes I followed to the T were just plain boring. It takes time to get the hang of this but but I am finally beginning to feel more comfortable with it.

I would not trade a good black bean "burger" for anything. The "chic" patties are to die for. I could eat the whole package but they have 5 grams fat in each one so I make a sandwich with Ezekiel bread which only has 1 gram fat in two slices. Heap it up with veggies and Mustard - my new favorite condiment. 6 grams total for lunch plus the 2.5 for breakfast and I have 6.5 left for dinner. This is possible.

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old joke: idiopathic means the patient is pathological and the the doctor is an idiot

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ladyjenie
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Are those of you on this diet feeling any better? How about losing weight?

I am dinking Nopalea juice twice daily and feeling much better. Pain and back of the neck headaches are gone, mind clearer, arthritis much improved, and I'm finally getting a life after 14 years of being ill. Nopalea claims to fight inflammation and detox which have been the exact results I've seen thus far.

I am not treating the Lyme any longer because my last treatment with IM Clafaron brought on an acute case of Morgellons which at the time I didn't realize that's what my skin issue had been for years. I had seen several dermatologists that claimed I had everything from Rosacea to Psycogenic Dermatis.

I don't know if I should re-address treating Lyme? Would like to hear from some of you that have been treating a long time and know about the process when one has found something that improves their quality of life but isn't addressing the cause.

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ladyjenie
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Are those of you on this diet feeling any better? How about losing weight?

I am dinking Nopalea juice twice daily and feeling much better. Pain and back of the neck headaches are gone, mind clearer, arthritis much improved, and I'm finally getting a life after 14 years of being ill. Nopalea claims to fight inflammation and detox which have been the exact results I've seen thus far.

I am not treating the Lyme any longer because my last treatment with IM Clafaron brought on an acute case of Morgellons which at the time I didn't realize that's what my skin issue had been for years. I had seen several dermatologists that claimed I had everything from Rosacea to Psycogenic Dermatis.

I don't know if I should re-address treating Lyme? Would like to hear from some of you that have been treating a long time and know about the process when one has found something that improves their quality of life but isn't addressing the cause.

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ladyjenie
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Thank you, hadlyme, for this reference. Sheds new light on why I was bedridden 9 years after having a failed neck fusion and why the many doctors (50+) have not found a true cause for my 14-year inflammatory illness.

I am hoping the research may one day come across the mystery of Morgellons, whether it is from the tick bite, environmental, a vector, or morphing of a bacteria or something else.

One thing I have concluded: Morgellon's patients MUST detox internally to see improvement in their lesions.

Sorry to get off the original subject, I apologize, but a few on the forum that had Lyme now have Morgellon's.

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ladyjenie
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Thank you, hadlyme, for this reference. Sheds new light on why I was bedridden 9 years after having a failed neck fusion and why the many doctors (50+) have not found a true cause for my 14-year inflammatory illness.

I am hoping the research may one day come across the mystery of Morgellons, whether it is from the tick bite, environmental, a vector, or morphing of a bacteria or something else.

One thing I have concluded: Morgellon's patients MUST detox internally to see improvement in their lesions.

Sorry to get off the original subject, I apologize, but a few on the forum that had Lyme now have Morgellon's.

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hadlyme
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Hi Ladyjenie...

You really need to listen to this radio talk with Dr. F. It's on Morgellons too!! This should shed 'more' light on your situation! He feels it's all from this protozoan.

http://betterhealthguy.com/joomla/blog/243-dr-stephen-fry-on-fl1953

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Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again!

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nefferdun
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I have just finished a week of ivermectin with mino and I have been on the diet about a month. I do feel better. I can now walk up the stairs without feeling breathless at the top. That is a major difference.

I think the ivermectin is workng for people with Morgellons too.

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old joke: idiopathic means the patient is pathological and the the doctor is an idiot

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ladyjenie
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I started Fenben this morning for detox. Going to add Iver soon. I like to add one thing at a time so I can see the results.

The Nopalea I preach about has been detoxing for weeks but I want to add Fenben & Iver tsince I am still seeing things (small seeds).

HadLyme, thank you for the link on myco's. I am going to ask my doctor to call Dr. Fry in Arizona to see which tests are necessary for me so I will know if this is an issue.

When I was tested for Lyme the lab report noted something about Mycoplasma antibodies + my daughter and I had Myco Pneumonia many years ago. I donot know if any of this is related. Does anyone know

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kelmo
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You guys are really overthinking the fat thing. LOW FAT, not NO FAT. If you cut out meat and dairy and sugars, that is half the battle.

My daughter does supplement with B12, but it doesn't take much. She has actually been high in B12, and she hasn't had meat or dairy in two years.

The diet has made a big difference. My daughter started with mycoplasma pneumonia.

He advocates the McDougall diet, so follow that. My daughter just happened to want to go vegan because she felt sick after eating meat and dairy. Since she was a baby, she disliked it.

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annxyzz
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Jenie , can you tell us more about nopalea juice ? How does it work? What has it done for you in improvements?

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annxyzz

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nefferdun
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That is great Milagro. Hang in there. There are some low fat salad dressings you can buy. I bought Newman's Own and it has 1.5 grams fat per 2 TB. No preservatives. I also did a stir fry with it and it was pretty good.

Kelmo, I am glad your daughter is doing well and the diet has helped her.

I eat a LOT on this diet.

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old joke: idiopathic means the patient is pathological and the the doctor is an idiot

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annxyzz
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What are most people treating FL 1953 with ?

Are any of the people who have it ever able to eradicate it ?

Sounds like it is somewhat like a helminth AND parasite , so maybe that is why IVERMECTIN causes intense herx .

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annxyzz

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ladyjenie
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Annxyzz, Nopalea is from the Nopal cactus. It has anti-inflammatory properties.

I take 3oz twice a day and have noticed a significant improvement in my overall health within 4 weeks.

I went to church last Sunday for the first time in years. I went to Austn, TX end of March for a weekend conference and just got in from Dallas attending a wellness conference.

It has detoxing properties and that is probably the significance of making one feel better.

I couldn't understand why my Rheumatoid Arthritis wouldn't respond to infusions of Remicade, a biologic immuno-suppressent drug (first treatment years ago @ $8400), twice weekly injections of Enbrel, mexotrexate (low-dose chemo), or Prednisone.

My thoughts are the inflammation was caused by parasites. I didn't feel better until I started detoxing internally.

I tried several protocols but no help there either. We all have to do what works for our body. God made us unique and we are different.

My bone damage can't be reversed but I don't feel the pain unless I stoop or sit in the floor. I have so much energy I don't want to go to bed until 2am. I do have a few days where I'm sluggish but it's manageable.

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