posted
Recently got a positive diagnosis for FL1953. New type of protozoan infection similar to babesia, the next co infection. Any one getting treatment for this? I am on Alinia, Diflucan, metals detox, etc. plus intestinal enzymes and oil supplements. Also, I had tremendous body pain with this daily, but tried Lyrica 50mg 3 times a day.....its like I am a new person finally no PAIN!!! I do herx from treatment.
Posts: 12 | From Colorado | Registered: Oct 2011
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posted
My daughter has this diagnosis, also Q Fever. Takes Minocycline, Alinia, Diflucan and,of course, lots of supplements. She has been on this regimen for 2 months and sees the doctor this week. She has lots of pain that is hard for me to see what's causing it, and also what's helping or causing the herx!
Posts: 312 | From Utah | Registered: Nov 2010
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posted
Does your daughter have alot of muscle pain in legs and arms, also at the base of the neck (sometimes burning pain). I have a rash to of small red bumps that comes and goes on my torso. It your daughter isnt real young have her try the Lyrica for pain, it really did help. It is a temporary fix for pain but at least some relief. Please Let me know what your doctor has to say. I see mine next week in PA. Been looking for a reason for my intense fibromyalgia for 3 years now, hopefully this parasite is the cause and I can get rid of this disease.
Posts: 12 | From Colorado | Registered: Oct 2011
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
My doctor is pursuing this right now and having me tested and is going to start me on a therapy similar to yours. I see a Dr. in CT.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
My doctor was baffled by my symptoms for quite awhile, all the abx and other treatments werent working...until she heard about this. There is a good interview with a Dr. about this disease on the web, if you google it and look for "the better health guy" blog you will find it there. Very interesting info.
posted
I have this. Diet is a MUST with whole foods, low fat with any of the abx meds that we take.
You can even herx with the diet. Your pain can get better from the diet. Low fat...real low fat, no nuts, oils... whole foods.
Cologirl.. please go back to your post and remove doc's name...thanks!
-------------------- Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again! Posts: 941 | From AZ-MT | Registered: Oct 2004
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posted
No my dr. is in PA. I think all the LLMDs are just learning about this and testing people they are having a difficult time treating and having any results (like me).
Posts: 12 | From Colorado | Registered: Oct 2011
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posted
2young, I see this dr. that has the lab. He is doing more and more studies with ALS and this protozoan. He is here in AZ.
In the coming months you will hear about more things he's coming up with.... And it's so great to hear that other llmd's are finally listening to what he is saying and finding.
Diet is really a key though. He states we have to 'starve' this protozoan... and LOW fat is how it's done. It makes the biofilm thinner and the little bugger can't live.
McDougall diet is what you can look up. I don't do a complete no meat... I have some lean grass fed beef and org. chicken... but all whole foods.
-------------------- Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again! Posts: 941 | From AZ-MT | Registered: Oct 2004
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posted
I'll be trying it in a month. Low doses. I just had a bad herx this summer from Diflucan (which is another antifungal and antiparasitic)and it landed me in the hospital. So he wants to make sure I'm over my Valley Fever before trying Ivromectin.(fungal infection from our dirt out here in AZ). Others are getting better on this drug in low doses.
Please Please try the whole food thing. You will FEEL BETTER! Was told a story of an ALS patient that was losing their voice/talking... and with diet and drugs, is talking again.
You can reverse this.. but you need to follow the 'rules'.
No milk products, no fat.. no oils, no nuts, no cheese.... Think fresh veggies, steamed, baked, but pretty plain! I get the I can't believe it's not butter spray... and put some on my veggies for a little taste.
The whole thought is when you starve the little buggers, the biofilm gets thinner, or non exsistant, and then the meds can hit the bugger better. Fat feeds the biofilm... No fat, and you can treat the protozoan better.
Wheat products can be ate.
It's a way of life... and you will herx on the no fat low fat thing. Once you've ate like that for a few weeks... and then cheat, you will feel aweful!!
-------------------- Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again! Posts: 941 | From AZ-MT | Registered: Oct 2004
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posted
I tested positive for this bug too. For those of us that never had a positive lyme test, or a bullseye rash, it answers a lot of questions.
The lab provides a picture of the protozoa encased in biofilm, and also hemobartonella, if that is observed.
I don't know if there are any specific symptoms, or if they are similar to babesia. I think they're learning all the time, how to treat this protozoa. Ivermectin must be the newest thought. They're doing susceptibility studies to see what works best. It's exciting and cutting-edge, because it targets the exact organism.
Posts: 964 | From san diego | Registered: Oct 2009
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posted
I have not followed the low fat diet, for the exact reasons you site. How can you when you're taking 46 gr. of fat a day?
However, my tests showed few biofilm community-like structures were observed, which to me means, the Mepron, Lariam, and Daraprim were effective against this protozoa since there were "few".
Posts: 964 | From san diego | Registered: Oct 2009
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posted
Just concerned about the low fat diet because I am already under weight 5'11" and 135 lbs. I guess I can try diet for a limited amount of time and see what happens (never really ate lots of fast food, but do eat dairy products). I did eliminated all oils, nuts, argingine amino acid producing foods (berries, chocolate, etc.) Does anyone have alot of muscle fasiculations all the time day and night?
Posts: 12 | From Colorado | Registered: Oct 2011
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posted
You do NOT need fat to take Mepron and Malarone. Period. No LLMD has ever stated to eat that way that I've seen, and I have seen two top llmds in the country.
Look up the McDougall Diet...
It's not a 'diet' to lose weight. It's a WAY of life to eat this way for life. If you want to feel better, eat better for the disease. I'll probably always eat this way now... not a fad to do for a few months and stop.
And doc is a microbiologist... I will take his word on what breaks down the biofilm under his microscope.
Same symptoms as Babs, bart, you name it. This bugger is probably what has kept most of us from ever feeling better.
And this is new to taking the Ivermictin... baby doses is what I am told some are taking. Not everyone is on that yet.
Let's not jump to any conclusions here... just like this disease is different in all of us, we are all different in how drugs and treatment goes in us.
One size does not fit all when it comes to this vector borne disease thing.
But one thing is easy to do.... whole food eating will make you feel better.
-------------------- Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again! Posts: 941 | From AZ-MT | Registered: Oct 2004
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bcb1200
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posted
quote:Originally posted by hadlyme: You do NOT need fat to take Mepron and Malarone. Period. No LLMD has ever stated to eat that way that I've seen, and I have seen two top llmds in the country.
I'm sorry, hadlyme, but this is is just plan wrong.
Atovaquone, which is the only ingredient in Mepron, and one of 2 ingredients in Malarone, is FAT SOLUBLE. The literature that comes with the drug says it must be taken with a meal, or fatty substance so it can be absorbed by the body. Check out drugs.com or other drug sites for proof.
Also..Dr. S says so in his book, "The Lyme Disease Solution."
Excerpt: "(Atovaquone) should always be taken with fatty food (such as nuts, cheese, or similar food), because it is much better absorbed by the body when it is ingested along with a fatty meal. "
Not taking fat while on mepron significantly reduces its effectiveness. You may get a tiny bit in your system...but that's about it. Considering the cost of Mepron, that is a lot of $'s potentially wasted.
Malarone, on the other hand, is a bit different. Yes, the atovaquone should be taken with fat like with Mepron. But..if you didn't take it with fat, then you still may benefit from the Proguanil which is water soluble (I believe). Proguanil is only available in Malarone (which is now generic, BTW.)
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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posted
You said it... must be taken with food OR fat.. Take with food.
Again, I listen to the dr's that I have seen. Dr. H never ever talked about this with mepron/malarone.
Eating fat would be defeating the purpose of taking the drug. Quoting one dr.'s view on it doesn't make it so. So... I'll listen to my current dr. and take his point of view.
I'm getting better taking Malarone and no fat. Go figure.
Fat is only making it harder for the Malarone and Mepron to do it's work and make you feel better.
But... again.. we all have to what we think is best for our own bodies.
-------------------- Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again! Posts: 941 | From AZ-MT | Registered: Oct 2004
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bcb1200
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posted
Hadlyme...the "Food" portion assumes you ahve fat in the food you eat. Read the literature from the drugs. It can't be any clearer.
From drugs.com interations checker:
"There is 1 alcohol/food/lifestyle interaction with Malarone (atovaquone/proguanil):
Moderate Food Interaction
ADJUST DOSING INTERVAL: Food, particularly high-fat food , significantly enhances the oral absorption and bioavailability of atovaquone. In 16 healthy volunteers, administration of a single 750 mg dose of atovaquone suspension following a standard breakfast (23 g fat: 610 kCal) resulted in an approximately 3.4-fold increase in the mean peak plasma concentration (Cmax) and a 2.5-fold increase in the mean area under the plasma concentration-time curve (AUC) of atovaquone compared to administration following an overnight fast. In a study consisting of 19 HIV-infected volunteers receiving atovaquone suspension 500 mg/day, Cmax and AUC of atovaquone increased by 72% and 66%, respectively, in the fed state relative to the fasting state.
MANAGEMENT: To ensure maximal oral absorption, atovaquone products (suspension, tablet, or in combination with proguanil) should be administered with a meal or milky drink at the same time(s) each day. Because plasma atovaquone concentrations have been shown to correlate with the likelihood of successful treatment and in some cases, survival, alternative therapies may be appropriate for patients who have difficulty taking atovaquone with food.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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posted
bcb is correct. Mepron must be taken with fat, or it is not fully absorbed. Even Lariam is supposed to be taken with a glass of milk for absorption.
There are other treatment protocols for the biofilm/protozoa that do not require fat, such as Plaquenil/Mino or Plaquenil/Biaxin or the latest, Ivermectin.
There are other tools to penetrate biofilm, such as lumbrokinase and systemic enzymes, Detoxamin or EDTA, Interfase Plus, and EDTA Liposomal.
No one is discounting that this doctor advocates a low fat diet, or it's efficacy in dissolving biofilm. It may not be possible to adhere to such rigid guidelines, when taking Mepron or Malarone.
Posts: 964 | From san diego | Registered: Oct 2009
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posted
Yes my daughter had to take Malarone with fat. Says it right on the drug information insert when we picked up the prescription at the pharmacy.
Posts: 499 | From Malta, NY | Registered: Dec 2008
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Dekrator48
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posted
If you would like to read about how fat enhances the absorption of Mepron, please see pages 2-3 of this product monograph about Mepron, where it states that "Fat has been shown to enhance absorption significantly (See Pharmacology).
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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Again, everyone needs to do what you feel is correct for your body.
I will do what my llmd is saying. And since I'm feeling really good these days, something must be working. Off to do my 2 miles right now actually!
Intesting that fat is making everyone worse, and not getting better.. and then you still insist on eating it. Amazing human beings we are.
-------------------- Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again! Posts: 941 | From AZ-MT | Registered: Oct 2004
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Haley
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posted
I went on this diet as my doctor (that knows nothing about Lyme) suggested it. I am not overweight but my LDLs were 160 they went down to 80. I lost too much weight and I had to start eating some meat but the diet in many ways changed my life (not too mention it is also treating Lyme).
When you cut down on fat you are unclogging your system. Not only do you get more oxygen from plant based foods and less fat but you deprive the bug of what it needs to thrive.
If you get Netflix here is a great movie - Forks over Knives
posted
Arizona, thanks for your insight into this new protozoan. Since your so close to the source of knowledge from the Dr. in AZ I find it very informative. I am going to see my Dr in PA next week and see what new info. (in any) she has and what her next protocol with me will be. She claims FL1953 is contracted by mosquitos (sp?)in Arizona. Have your heard of any other means of contracting this disease? Thx.
Posts: 12 | From Colorado | Registered: Oct 2011
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METALLlC BLUE
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posted
quote:Originally posted by hadlyme: I will follow my llmd's instruction.
Again, everyone needs to do what you feel is correct for your body.
Intesting that fat is making everyone worse, and not getting better.. and then you still insist on eating it. Amazing human beings we are.
Patronizing post is Patronizing. LOL
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
For those of you seeign Dr. F can you pm or state what the protocol is for this? So lets say you have babesia and the protozoa and you are taking mepron for babesia and 50grms of fat daily for that. Does the lumbrokinase and an otherwise low fat diet with organic fruits and veggies help? I also need to drink goat's milk kefir to help fight the c diff I got while in ABX. Otherwise I don't get enough good bacteria. I had been on mino and plaquenil for about a month or two at the start but was making no headway against babesia which was my worst infection based on symptoms and my response to mepron. So if I ever get rid of babesia and off mepron then what is the protocol for the Pry protozoan? Ivermectin I have ben on for other parasites but it was for only two days. What's the dosages like. PM me if you must. But I would like to know as I see my llmd in MD on the 25th and woudl like to discuss this with ehr then. Thanks.
And FL1953 is a vector borne disease. Finding that many bugs can carry any and or all diseases, not just this one.
Low fat IS making us better. Yea, I am a 'lab rat' by choice and loving it.
You all can keep saying your RX info says to eat fat. But.. so interesting that no LLMDs that I know of say to do that. Again... and NOT patronzing.. do as you all feel is best for your mind and body.
Whole foods... think smart people... I eat a bit of grass fed beef.. low fat.. it's not rocket science to eat whole healthy food low in fat.
Not sure why this is such an issue. You eat fat. I don't. I'm sure there's lots of other things we do differently too.
You eat fat, you are making your biofilm THICKER. Thus the meds can not work. Go for it if you like. These new studies will be coming forth to a local llmd close to you soon! LOL.
-------------------- Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again! Posts: 941 | From AZ-MT | Registered: Oct 2004
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quote:Originally posted by cologirl: She claims FL1953 is contracted by mosquitos (sp?)in Arizona. Have your heard of any other means of contracting this disease? Thx.
- From my discussion with Jeremy Ellis today (Fry lab) you can get this anywhere .. from mosquitoes.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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No real protocol. We are all treated differently with lyme and company, same with this Protozoan. What worked for me in my lyme treatment, still works with this. Think of it as another co infection, but the one that has been making us the sickest. It's all vector borne diseases..bugs bite us...we get the germs.
Again, the only real protocol if there is one, is LOW FAT. You can NOT get better when you eat that kind of fat. 10-12 grams a day is what you want to do. Starve the little bugger of fat. Easy step to do.
What is working the best for me right now is Zith, Malarone, and Diflucan (had Valley Fever this summer which is a fungal infection)
Will be starting Ivermectin at baby doses. Nothing is ever done in mega doses, no matter what you take. One can herx on just going on low fat.
I was always told I had babesia... same type of symptoms and treatment really now too, except the low fat thing.
No milk products. McDougall Diet,ultra low fat diet. (if you must, eat grass fed lean meat) Low on the Nightshades. Low Arginine,or ratio. Vit D. NO Magnesium or baths in Epsom salts. Avoid Sugar. Exercise daily. Heat up your body temp daily. Decrease abx or stop during a herx.
There... that's pretty much what we are told. I'm sure any of your llmd's have Dr F # or the lab #.. he's in touch with many of them already from the sounds of it.
-------------------- Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again! Posts: 941 | From AZ-MT | Registered: Oct 2004
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posted
Dr. F is speaking at many many conferences, lyme and non lyme. Autism, ALS grants, many different things. And with any studies...it does take years.
No studies that I am aware of if it's contagious... think of it like lyme/babs/bart... it's a vector borne disease. Do you think babs is contagious?
-------------------- Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again! Posts: 941 | From AZ-MT | Registered: Oct 2004
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posted
Thanks Hadlyme. I will ask Dr. L if she has spoken to him, The low fat and low milk thing will be hard for me for the current few months (I am at the end of month 6 of Mepron), maybe later when I get off mepron (I hate all the sugar in that stuff!) I can happily go to a low fat diet.
I don't eat alot of milk-only goats milk and some yogurt-again because of the c diff. I need to feed the good bacteria. Now if I could just get my hands on that GcMAF stuff maybe then I could eat the low fat no milk diet and be cured!
posted
The McDougall diet makes no sense. According to Dr.F as per the latest conference on the betterhealthguy.
�He suggested that many people with chronic illness may struggle with wheat not due to the gluten content but due to the high arginine which the FL1953 protozoan thrives on.
The McDougal diet with all the beans,soy and oats is very high in arginine. So it seems to me as you are feeding it.
Posts: 433 | From new york | Registered: Dec 2004
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Catgirl
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posted
Hadlyme, I'm confused, you said no magnesium? I think we need it since lyme depletes it. I kinda feel like everything it depletes, we need more of, like vit D.
Also, bcb1200 is right, there is info on taking mepron with fat, it's just harder to find. Once I did that, I started feeling better. Maybe try to eat less fat than we are all used to eating.
I am feeling much better, and I think it's because I am getting more magnesium.
I also think its because I force myself to get more rest (was doing too much exercise--anaerobic). This has really helped. I now work out once every four or five days.
There are so many variables to lyme and company. You have to do what works for you. I guess balance is key.
It also wouldn't hurt to review Burrascano's guidelines from time to time (Lyme king). He's big on avocados, which of course are fatty (good fat).
-------------------- --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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posted
RE symptoms - our dr. thought babesia (clinical diagnosis, no positive test), began treatment w/ Mepron & Zith then when the Fry test came back positive for FL1953, thought that was cause of symptoms instead.
So it seems symptoms may be similar to babesia - shortness of breath, night sweats.
Still learning! hard to sort out symptoms with a bunch of infections!
Posts: 312 | From Utah | Registered: Nov 2010
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kelmo
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Member # 8797
posted
My daughter has been a patient of Dr. F since 2006. She has been on most of the protocols, saw some improvement with all of them. This last year, after attempting to have a life, she collapsed and relapsed big time.
She had tried Ivermectin before, as a test, and after four days, taking one pill a day, she was in a fetal position, in so much pain and mental turmoil, she had to stop.
However, Dr. F went, Eureka! As soon as he was able to replicate the organism, he started testing drugs on it.
So far, Ivermectin is the only thing to kill it.
My daughter started it again after six months of low fat (she also chose to go vegan) diet. Because of this, we can visibly see in the blood test photo comparisons of her organism, that the biofilm is breaking down.
She has tried to work up to one pill a day, but can't get past 1/2. She has had to stay on 1/4 pill daily because her lymph glands were all overworked and she was too sick to function.
For the record, she has not lost any weight on the low fat diet. Isn't that odd? I think most of her body is inflamed. We can see her visibly puff up before our eyes. Sometimes one side will be bigger than the other.
Yesterday, she went to physical therapy and told them two fingers were locked up on her right hand. They felt her forearms and said her muscles were so full of toxins, the inflamation was causing the problem.
This confirmed the ivermectin was getting into the tissues where the bug has been hiding.
Her face has SEVERELY broken out, as the toxins are trying to get out, diarreah, pores spewing foul odors. She does the FIR sauna daily, drinks detox teas, and consumes nearly two gallons of water daily.
She has never tested positive for Lyme. Symptoms are similar to all Lyme and coinfections. She had band 30 and 41 positive back in 2006
For those not getting better after years of other protocols, it's worth a look. She will be the first to tell you she has never had a herx like this. HERX FROM HELL.
(edited for grammatical errors)
Posts: 2903 | From AZ | Registered: Feb 2006
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posted
Mindy, Yes, I did go by Dr. B's protocol for years. Now I do not. What we 'know' about magnisium is not what we should be doing anymore. I used to think it made me 'feel' better to. Now I know I was just feeding it all.
I even asked Dr. F yesterday about mag. as I have muscle pain that comes and goes. I try to walk 2 miles every night... and right now my muscles are in that tightening thing. He stated its the bugs again. Sometimes I don't have this, and then months later I'll get it.
Kelmo, glad you're finding something that is hitting this with your daughter.
I do feel we're on the right track for sure.
-------------------- Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again! Posts: 941 | From AZ-MT | Registered: Oct 2004
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posted
Does anyone know if Daraprim kills this bug? My LLMD mentioned Dr. F and this new parasite to me last winter and put me on daraprim, but I can't remember if it was to treat the new bug or to continue to treat babesia.
Posts: 618 | From NC | Registered: Oct 2009
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posted
I spoke with the main researcher at F. Labs, this week. One of the comments he made was if you are taking Mepron, it MUST be taken with fat to be absorbed.
So, even though they have found a low fat diet to be effective against biofilm, there is no question, if our doctor's are prescribing Mepron or Malarone, they should be consumed with fat.
[ 10-21-2011, 09:20 PM: Message edited by: Lymetoo ]
Posts: 964 | From san diego | Registered: Oct 2009
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posted
My doctor started treating me with Artemisinin for this FL1953 bug. I had been on Alinia/Diflucan, she said it kills protozoans as well as babesia. I guess will take it and see if I get a herx from it or not to tell if its the right drug to be on. Never did mention Ivermectin though...next conference call I will.
Posts: 12 | From Colorado | Registered: Oct 2011
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posted
Not sure who said to eat the fat with Mepron and Malarone at the Lab the other day, but Dr.F himself laughed when I asked him on Wed. what he thought about how everyone is saying it HAS to be taken with fat.
He said it is very important to NOT eat the fat with it. It's protecting the bugger when you eat the fat.. so that the Malarone will not work through the biofilm. I told him there was a big discussion on it....
We all need to find what our brains want for our own bodies. I'm doing this new way of thinking.
-------------------- Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again! Posts: 941 | From AZ-MT | Registered: Oct 2004
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posted
I think if you add up all the diet restrictions that have been suggested, you will have almost nothing to eat. And people who are hypothyroid, will also have a list of things not to eat.
A herx from hell will kill a lot of ALS/Lyme patients, so someone had better be cautious about this approach with that group of patients.
And if I did not take magnesium, my life would be intolerable from cramps.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
A very interesting discussion but it brings up one of my favorite saying -- correlation without causation.
Just because patients say they are getting better on a low fat diet does not mean that the fat is the reason. Fat is found in primarily animal products. And so is iron.
Babesia and all protozoan parasites need iron to live. Has the doc considered that it might be the lack of iron in the diet that is helping starve the bug? That is the way some of the malaria meds such as bactrim and daraprim work to kill malaria parasites -- they work on folic acid which is also needed by protozoa.
Just an observation and another way of looking at the issue.
If you already have nerve damage from Lyme and tickborne parasites please be very careful about overly restricting the good fats in your diet. Fat is needed to insulate the nerves.
This is not medical advice, just my opinion based on hubby's experiences.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Bea. I was worried about this, as well. My daughter's iron was low. She is increasing spinach, raisins and dried apricots to her diet.
What we have noticed since going on the lowfat diet is the difference in the biofilm structure.
The biofilm organism used to be a cohesive blob with a distinct outer wall. Now, it's breaking up and the biofilm seems to be gone. This has allowed the organism to be covered with white cells.
Your point is well taken. It's like balancing on the head of a pin.
Posts: 2903 | From AZ | Registered: Feb 2006
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tricia386
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posted
I just posted about this!
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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tricia386
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posted
My story is a lil different. I got lyme disease after the gardasil vaccine, I had a horribble reaction and I am lucky to have survived it or ended up as "good" as I am today.
The vaccine caused all my dormant virus pathogeons to come out.
I am working with a researcher and LLMD. My immune system is shot from the shot. No pun intended!
LDN is my life force to save me. Many girls now have lyme and co's or other infections after the shot.
ANYWAYS,
I spoke to teh researcher Weds night. And he said that about 75/85% of the girls are showing to have this.
I am getting tested at my next llmd appt. He says it takes about a yr to put into remission. But if you knock this down that lyme and co's will not be as hard and ur immune system will no ppl to take care of it.
Also he did say how fats and breads are bad for it. People are using Artesismin.
He said its so common that lots of ppl have it but onces its unleashed its a beast!
Anyways best of luck to all of you!
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
That's interesting. My doc has always said he can knock Lyme out in about a year, but it was this one organism that was making things difficult.
Posts: 2903 | From AZ | Registered: Feb 2006
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posted
Kelmo, I am wondering why Dr. F. recommended plaquenil/biaxin with a low fat diet, when my doc spoke to him, if Ivermectin is the only thing known to kill it? That's odd.
I tried his recommended combo, which did nothing. I am now about to start alinia, which some are reporting severe herxes from. I'm wondering if I should have been put on Ivermectin instead of plaquenil/biaxin combo that was initially recommended by Dr. F.
Posts: 418 | From NJ | Registered: Sep 2007
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kelmo
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Member # 8797
posted
How long were you on Ivermectin? My daughter finds for her it hits hard about four weeks into it.
She took the biaxin/plaquinil combo for a while. It didn't do anything for her.
Ivermectin is doing something. After five months at 1/4 pill every other day, she had a couple of days of feeling almost normal.
I noticed her eyes were clear and bright and there was more energy and fun.
On Thanksgiving, she woke up with swollen lymph glands and nausea. She increased to 1/2 pill, and hit the four week mark. So, she is in a major flare
But, she had two days where I saw her look like she did before she got sick. It was encouraging.
Dr. F said that Ivermectin at theraputic dose of 9mg daily, is the only thing to kill the organism in the lab.
I'm sure you can knock some other tings down with biaxin/plaq.
Posts: 2903 | From AZ | Registered: Feb 2006
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
cologirl, Hi! This new Parasite? Close to Babs. are there other ways to tell if one has it...This is new to me. They have been treating babs about 3 plus weeks and 2 other treatments for basics before that.
I'm a Colorado girl also.. Did you see anybody here? You can PM me. Had you been ill long??
If you PM me ,I can or would e-mail you if that's better for you.
Is this your 1st go around ,or did you have change in symptoms??
Kelmo how do you know what the bio=film is doing??? I'm not being funny,but do you actually have something to look at this??
On mepron,Omniceft, Biaxin Salmento ,Noni, Burbur and about 9 other things.. I try hard but stuff does get missed..
You all sound like miracle eaters. I thought I was doing far with food. But after reading this, I'm sad... This illness has taken so much.
Hope to here from you Cologirl..
Hope my Dr's know something about this...
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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kelmo
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posted
The Fry Lab has tests with pictures. We have had a few taken over the years.
I am not going to promote anything. I left because there was so much heavy promotion for products.
We are experimenting right now with Ivermectin. And, all I can tell you is my observation.
My daughter has had a herx with this drug unlike any other she has taken over the past six years.
Last week, she had two days where she looked like my pre-ill daughter. Her eyes were clear, she had almost no pain, and more energy. She did start to dive at the magic 5pm hour, though.
But, for most of the day, there was something she hasn't had in six years. Almost normal.
On Thanksgiving, however, she woke up sick and with swollen lymph glands and face pain. We talked about this last night and concluded that this drug works in cycles.
For some it's four days. For her, we are seeing a four week major flare. She increased her dosage from 1/4 pill every other day, to 1/2 pill...four weeks ago. This explains the crash.
We hope to see another rebound to bright eyes again.
She needs to work up to three pills a day. But, for now, it's a slooow trek.
Even her occupational therapist says she can see my daughter is full of toxins.
I don't believe that Ivermectin alone will cure. Because this is a vector disease where the body is infected with a soup of organisms, it is prudent to go through the rounds of antibiotics and antimalarials to kill other things.
From what I have seen, these biofilm communities have all kinds of crap in them. Bacteria, yeast, etc.
Posts: 2903 | From AZ | Registered: Feb 2006
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posted
Is Ivermectin what Dr. F is now recommending? It wasn't that long ago that be told my Dr. plaquenil/biaxin. She may have to call him again.
The llmd that she just trained with said that many of her patients with FL1953 have seen good results with alinia/homeopathic combo. So, that is what I am trying now.
It's funny, though..a few years ago I really felt that I needed Ivermectin, but, my llmd wouldn't prescribe it. I must've been right!
Posts: 418 | From NJ | Registered: Sep 2007
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
cologirl,
I have a dear friend, sick with lyme for 25+ years, in treatment for 7 yrs., still sick, sick, sick.
From what you've said on this thread, I'm going to talk to her tomorrow about being tested for FL1953.
Is there anyway you could contact me, PM me, with your PA doctor's contact info so I could give it to her?
Please, please! It would be a big help!!
Thank you very much!
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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nonna05
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posted
This FL1953 is from mosquitoes mostly? I was at about 75% during Summer.
Some really bad days but I had a few when I got out ..My triplet grand-daughters visited. I wasn't able to do near as much with them as I could last X-mas,but I tried. They stay here for several weeks..
I would not have made it to their country this Summer,but when my brother died ,they came here. A blessing in the middle of it all. This is before my actual diagnoses mid Aug.
For well over 5 year have been sick,escalated after steroids shots . When talking to LLMD he thought I might have been re-infected. Don't really know why.
But I had been told to ground myself earlier from Holistic person,so I would put my feet in grass for a bit once in a while and the only thing I remember is mosquetoe bites.
This is also the only thing I remember about bites before I got so sick. So short of the test, could this be the source. Do you think people have been ill with this all along and fighting with wrong amo??
Is test hard to get.. Just put on Medicare, not do to age. But I had to .. My LLMD just stopped taking it . So I might have to ask Intern..
He is trying to help and borrowed a couple of books from me. But we all know how hard it is to get going on this.
So far is mag OK, is 5ml oil with 5ml mepron OK, enough to make it work. And this new FL1953 is what could be holding many of us back from getting better? Thanks for any help, Kinda feeling like I'm not getting what I need, or doing what I should. And feeling sick 24/7 doesn't help a bit..Love to you all. Nonna
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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posted
I'm not sure if they know where you get FL1953. It's just being seen in alot of people with lyme. I wouldn't be surprised if it came from mosquitos. I get so many mosquito bites..they just love me. And bug spray doesn't prevent the bites for me.
This is still a controversial subject, with some doctors not believing that it exists. I sometimes have my doubts, but, that has happened to me with lyme, as well.
The test at Fry labs was the blood smear, and I had to pay out of pocket. You can look it up on their website. I can't remember how much it cost. Good luck.
Posts: 418 | From NJ | Registered: Sep 2007
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kelmo
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posted
It's thought mosquitoes were the vector in our case.
Posts: 2903 | From AZ | Registered: Feb 2006
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manybites
Frequent Contributor (1K+ posts)
Member # 33750
posted
no wonder that my daughter got better in IVERMECTIN dosages for a month .She is pozitive for FRY bug and not lyme ( even though she treated lyme with bionic and with muscle test she was pozitive and not IGENEX).She also had puffiness.
It time to try ivermectin again .It helped me as well last year .I would try it again and see.
Posts: 1379 | From disable | Registered: Aug 2011
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How long does the doc say patients need to stay on ivermectin once they get to therapeutic dose? And will you continue pulsing or are you supposed to take it daily?
Hubby is starting this med tomorrow. Will take a small dose 2 times daily for 2 days in a row on a weekly basis. He is adding this to his doxy, flagyl, lariam, malarone and artemisinin.
Thanks for any input.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
My daughter just tested positive as well. We need to treat H Pylori again and then we will work on Fry bug. Right now she is currently on Mal/zith and Artemisinin Essentials.
Debg
Posts: 499 | From Malta, NY | Registered: Dec 2008
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