richedie
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I brought this up before but has anyone recently been tested for this protozoan and started treatment? I was told the treatment is plaquenil and biaxin which I am on now, plus a very low fat diet. But I have not been given a time line? I am sick of taking antibiotics and need a break and may only give this 2-3 months before stopping. I also hear it can't be cured.
What about some of the herbal protocols, do they hit this thing?
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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richedie
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Anyone?
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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Personally I would try cryptolepis tincture in large doses -- up to 15 droppers or 1/2 ounce 3 times per day. But start with maybe 1/2 dropper and work up. If you are really brave you could combine that with something like yarrow tincture -- I only got to 1 dropper 2 times per day with hubby. And it would probably be a good idea to add in prickly ash tincture at maybe a dropper with each dose of herbs.
Other possible herbs would be spilanthes tincture (instead of the prickly ash). Or maybe the Byron White or Healthy Directions formulas. If you have not done artemisinin then that would be another option. I would start with one herb or formula and gradually increase the dose and keep adding in additional herbs until you herx or start feeling better.
I think that babs meds or herbs are your best bet for treatment. Plus I would take something like lumbrokinase or wobenzyme and also papaya enzymes -- all on an empty stomach. You could also take lactoferrin which is supposed to help starve parasites of iron but make it available to people.
This is not medical advice, just based on hubby's experience.
Hubby has not had the test for the F lab protozoa -- but most likely has babesia duncani (WA1) and some other unknown blood borne parasite (see previous posts regarding his dumbbell shaped protozoa).
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Time line? Does any of this lyme and co infections have a time line? FL1952 is the same as a co infection.. Again. it's like Babs...
I don't know any LLMD saying there's a time line for treatment. It all goes on how each person does with treatment.
I'm doing Great on plaquenil and the different combo's that this lab llmd has prescribed.
I've been seeing him for almost two years. This is my SECOND time in treatment, the other time 1999-2001.
Yes, we can get any of this lyme and co infections, FL1952 in remission.... but?? who out there has found a 'cure' yet? I know no one llmd that says it's 'cured'.
I'm feeling the best I have felt in years... that low fat thing and then the abx has really worked.
I'm sick of taking abx too... but ya know what? It's making a difference. SO... will keep taking a low dose and live my life.
Do what you need to do for your own body and mind... we all are different in the levels of treatment we're in... and how long we've had it to treat 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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richedie
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Cryptolepis tincture? Never herad of it, it is cheap! Where have you read about it working? I have been avoiding alcohol however since I think that is a yeast issue and I am told to avoid yeast since my test showed me sensitive to it. So I might hold off on all herbs for at least a few months. When I do want to try some, what are the best sources of cryptolepis? By that point, I might just be ready to go the Cowden protocol!
When I started with my doc in MD, she told me it typically takes about a year for people to get better and that did not hold true for me.
The thing about the low fat and vegan thing is that I am probably feeding the heck out of myyeast which is horrible right now! I will keep eating the low fat vegan thing till my next visit and if I notice no change I might go back to normal eating for me.
Sometimes I wonder if the antibiotics ARE my problem, causing the increase of gungus and also supressing my immune system. My doctor is pulling me off all antibiotics at the end of April, thank goodness!!!!!!!!! I will come off the rifampin, biaxin and plaquenil. Dr. F is now saying more than anything one just needs the low fat vegan diet to rid themselves of this protozoan. That is what my doc said after meeting with Dr. F a few weeks back, they talk all the time now.
Been taking abx and a host of other things for 3 years and no change in how I feel. Took artemisinin for close to 2 years and no luck.
Thing that is frustrating is the only issue I have is pain and always in the same spot for three years!
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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posted
This organism is the latest candidate for what we thought of as the "bartonella like organism" or "haemobartonella" and exhibits both "Bartonella-type" and "Babesia/protozoa" characteristics.
I've been speaking with a few docs who have spoken with Dr. F, who is the one talking about the low fat vegan diet. The problem is exactly HOW low fat is to be considered, and what sources are all right. There can be health repercussions for depriving the body of lipids, so its something to try for a period of time but not keep going. I'm rather skeptical of its efficiency, as unless these bugs require an unusually high amount of fat, there isn't a way to "starve" them without doing harm to the patient.
Posts: 690 | From East coast, USA | Registered: Jun 2006
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richedie
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I don;t know what to think. A friend of mine got tested at F labs and they found the bartonella like organism" or "haemobartonella". He never got direct treatment for that. He only received Lyme, Bart and Babs and he is fine.
On the fat thing, I don't think there is anything wrong with avoiding fat. You will still get trace amounts in your food. I did it for years and felt great.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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AliG
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My LLMD had spoken with Dr F & I was told Biaxin + Plaquenil should be done for about 6 months. He made no mention to me about low-fat diet.
Did this news come out within the past 4 months?
As far as I know healthy fats are important for proper brain function. Was it all fats or non-organic fats & trans fats?
I'm wondering where your pain is located (same place for 3 yrs?) I just recently noticed a painful lump in my breast & have been dxd with "Invasive Ductal Carcinoma". Not intending to scare you but, if the pain is in a focused location, I'd think you may want to have it evaluated.
I've had positive tests for my plethora of coinfections & some believe that cancer may have an infectious cause. I wouldn't put it past some combination of these stupid microorganisms or their impact on my immune system to be responsible for my latest predicament.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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posted
Yes, this low fat diet did come out in the last 4 months.
And it's not just a vegan low fat diet folks.
It's low fat.
I see Dr. F.... Wouldn't he be the one telling me Vegan if it was?
Low fat.
I am off abx right now... feeling GREAT... staying with my low fat, NO Vegan diet.
-------------------- 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
FYI... when Dr. first came out talking about the low fat thing, he did talk about the McDougal diet which is vegan.
Since then, that diet has not been talked about.
Just low fat grams 15-25 a day is what is said.
And when He and I talked about Grass fed beef, he said that was ok. But not ok grain feed.
-------------------- 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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AliG
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posted March 31, 2011 09:45 PM:
quote:Originally posted by hadlyme:
I'm sick of taking abx too... but ya know what? It's making a difference. SO... will keep taking a low dose and live my life.
posted April 01, 2011 05:06 PM:
quote:Originally posted by hadlyme: I am off abx right now... feeling GREAT... staying with my low fat, NO Vegan diet.
I'm confused, are you ON or OFF abx right now? Is your diet "no vegan" as in NOT eating any veggies?
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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posted
I'm 'off' for full time. I can now pulse as I see fit as of Wed. with appt with my llmd. No more full time abx. He said, do what I've been doing, pulsing the plaquenil and pulsing my zith, and eating my low fat.
This doesn't apply to everyone folks... This is my body and how I've reacted to all this. I'm a retreat also.
I eat Low Fat... everything. Of course I eat Veggies.... but I also eat meat, Grass Fed beef only, and organic/natural chicken only.
I know this will be my life, taking abx at some times each month. But not full time as it has been.
-------------------- 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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AliG
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Thanks for the clarification.
I think I was told that after the six months we would "wean" me off of it. Perhaps that's where the pulsing would come in.
For the most part I eat a pretty low fat diet anyway. I realized that when I had to eat high-fat meals with Mepron. I do like my EVO though
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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posted
AliG- I am so sorry to hear about your newest health concern. I have missed seeing you on this board and will keep you in my prayers for sure.
-------------------- Corinne Posts: 529 | From Raleigh, NC | Registered: Jun 2006
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AliG
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((((hugs)))) Thanks Corinne! I've missed you too:( You've been in my thoughts & prayers often. How are you feeling? I've been hoping you've seen some better progress.
hugs, Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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richedie
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Dr. Fry has been saying this for about 4-5 months I believe, I have two docs who alked to him with the same answer, low to no fat. You get all the fats you need in trace amounts in food. Don't get caught up in all the propaganda campaigns trying to get you to eat more "good" fat.
Dr. F is apparently now saying you can do the lowto no fat thing alone without the plaquenil and biaxin but I might ask my doctor to keep me on it for 6 months just in case. To complicate things, my doctor from Maryland said she has treated people many times with plaquenil and biaxin in her ten years and it has never helped anyone.
My pain is all in the right foot, upper back and left arm, horribly painful shoulder, elbow and wrist and forearm muscles...for years now.
Hadlyme, your diet is promising that I will be able to make changes as well. Right now I am sticking to the vegan because Dr. M told me that Dr. F told him to have his patients do this. What can I say. Did you do plaquenil and biaxin for a while? How long???
Plaquenil and biaxin are hitting the protozoan and I guess the biaxin is a carrier of sorts. I am thikning I might want to come off these and switch to all herbals, maybe cowden as they also hit the same bugs and won't be as much an issue with candida! I want to come off abx for good and rely on herbals if needed. I am starting to wonder if the abx are now causing half my pain!
My point is also on meat having lots of fat, even if the package says 98% fat free. Can't trust those labels, that's all. Any meat I did buy was from Whole Foods and free range organic as well.
So Hadlyme, did Dr. F run food allergy testing with you?
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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posted
I've been seeing Dr. F for almost 2 years. Yes, did the biaxin, but didn't sit well with my stomach so stopped it. I've done zith most of the time. Malarone too.
Now back to Plaquenil and Doxy, but doxy doesn't sit well with my intestines.. so... Just doing zith and plaquenil off and on. One week zith and then one week plaquenil.
But remember... I'm a retreat.. so I wasn't all that bad this second time. I caught getting sick again and got my butt back into treatment.
No, my LLMD has NEVER said anything about food allergies. That is NOT coming from him.
My LLMD is NOT saying low fat and no antibiotics. That is NOT coming from him. It's a combo of abx and low fat. AND again.. Doesn't have to be all Vegan.
Not sure if in the translation He is being misunderstood. But.. I'm pretty good friends with my LLMD by now... and Seeing him every month for almost 2 years, I would think I would know what he is saying.
I've even invited him to other lyme speakers that our lyme group puts on... he comes to them and we visit and catch up on what he's finding at those meetings also.
Hope this clears this up... I've stated these facts before. Maybe your dr. is tweaking a few things.. ?? But.. abx and low fat. No allergy testing. GRASS FED beef is ok... not all vegan.
I know by being one of Dr.F patients, that we have been the 'testing' people for all his studies. I don't mind, and yes.. was one of the very first he talked to about the McDougal diet about 1/2 yr ago.. At that time we talked about meat and he ok'd eating lean back then and now just on Wed. when I saw him again.
Everyone is different. We all react to meds differently and will react to low fat differently. We all want to be better.. we all need to find what works for our bodies.
We are all in different phases of treatment too. So what works for me at the end of two years, might not work for someone that is 6 months into treatment.
I feel if I hadn't done the real abx that I wouldn't be this good now. I believe in abx in killing this protozoan. Babs/Fry bug/ or whatever they are.. it's a protozoan.
-------------------- 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
Last thing I'll say, as we've been over this in many threads.
When you get to a maintance level... then low fat should help keep this in remission.. per my LLMD.
It's not that you treat this with low fat only.
Somehow,please do not say that he is saying low fat only as he is not. Somehow, you have mis-interupt what is being said.
At the 'end' of treatment, how ever long that may be for any one... then maintance for a life time of low fat/lean meats... and that's not a bad life to lead.
I'm done with talking about this... but please again, don't say he's saying things that he's not saying. He's controversal as it is... making it out that he believes in low fat diet only for treating this is just wrong.
End of my comments.... best wishes in your treatment and everyones. Do what is best for your body please. What works for me doesn't work for you, and how long it takes for me, might not be what time frame it is for you.
-------------------- 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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richedie
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Maybe my doctor is lying. That anger's me. Dr. F recemmended to my Dr. M that his patients follow the McDougall diet. But my Dr. is hardcore vegan so maybe he was exagerating.
I feel I am just sick of taking ABX and destroying my gut. Been on ABX for 3 years and tired of it. I think I could go 100% herbs and forget ABX. I want to give the plaquenil a chance but my Dr. M wants me off all ABX. He told me Dr. F said nothing about Plaquenil although another doctor I saw was the one who said Dr. F recommends it so I know like you said, he is big on it. I am going to try and keep my doctor giving it to me for at least months and then switch to herbs.
The low fat thing is tough if you are trying to avoid candida. Really tough. Oh well....
ABX don't kill protozoans, that is part of the confusion. When I saw Dr. L in MD she said plaquenil and biaxin are for Lyme, so she was confused. I am really wondering if I could go 100% herbals like the Cowden protocol.
On the low fat thing, my doctor told me all he got from Dr. F was the low fat thing, no bolouke or anything, that is why he is fighting me on this plaquenil thing, said he never heard of using it in this case. I have to convince him and maybe have him call Dr. F again. Then I talk to Dr. L who said she found plaquenil useless. So confusing.
Hadlyme, thanks for all the advice! I don;t think you mentioned how much carbs and what type of carbs you eat???
Do you think it is OK to cheat? On Easter I was going to eat what I want for dinner and have a slice of my Mom's cheese pie!
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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I watch carbs, but not concentrating on them. Really just watching my fat grams.
I would eat the pie, but thats me. Just don't eat anything that your allergic too?
I have never been told to watch carbs. I never have been told to watch gluten. I don't have a problem with yeast that I know of. I eat pretty bland and simple to begin with. So, for me it's ok to cheap a bit sometimes... but again.. watch what you need for your body. I can't say yes or no to anything for you.. Common sense on not going over board on anything is probably the best.
I think it would be best if your dr. did call my dr again... he must be selective hearing? Hard to say why he's saying those things.
Plaqunel and or Malerone has done me wonders!
-------------------- 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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AliG
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I was told the Plaquenil helps the abx get into the cells. Was on Plaq + Biaxin + Malarone, just switched to Plaq + Biaxin + coartem.
Perhaps FL-1953 is protecting the Lyme & hence the need for abx in addition to antiprotozoal?
My Dr definitely heard the Plaq + Biaxin, though IDK if he heard the low-fat diet yet or maybe didn't suggest because fat needed with Malarone ??? I'll have to ask at next appt.
Thanks for all the info!
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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richedie
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With the yeast issues I have, I would love to know if there is an herbal combination to match the plaquenil and biaxin tandem. I'd be curious Dr. F's thoughts on that one!
One thing I have to consider is that it looks like I might have Ankylosing Spondilitis and it is debatable acording to most doctors I have seen. The number one diet recommendation for AS patients is high protein, low carbs. I am not sure I could eat lots of meat and still be low fat. That could mean a lot of meat!
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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richedie
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This no meat AND avoiding so called sensitive foods is killing me. A feel deprived because I am eating mostly the same things. I guess I should feel lucky, lots of people have it much worse. I feel selfish for feeling this way. I will keep trying it.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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richedie
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Mabye I am herxing????? I have been doing the low fat diet thing and plaquenil and biaxin and the pain is much worse in my feet and arms!
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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richedie
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I have been on plaquenil and biaxin for this for almost two months. When should I see a difference? How to know?
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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Any meat I did buy was from Whole Foods and free range organic as well. 
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