nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I finally got the test results back and I am positive for protomyxzoa. The GP had the results and I had to badger them for two days to get it. They said there were no pictures.
I asked if the GP would call Dr. F to find out the treatment protocol but the person I spoke to said he probably wouldn't. He is afraid now to treat the "tick born" illnesses.
So now what? I am taking stromectol every day for the past two weeks. I have been on the low fat vegan diet for about 3 months. I feel pretty good. What to do . . . .
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
| IP: Logged |
canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
Is this same as FLBug
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
| IP: Logged |
surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
I am wondering how the GP knew to read it?
I was told my results were in, but they don't say positive or negative,
so I am waiting for clarification.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
| IP: Logged |
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Yes, it is the same as FL1953. The new name is protomyxzoa rheumatica.
I was just told it was positive with no clarification. I thought you were sent a picture. It seems pretty vague. The F lab won't tell me anything either. I guess I will go to the doctor's office and ask for a copy of the results.
I have been responding to the diet but it is very strict, so I need the motivation of knowing I am infected to stick to it. I can feel the symptoms are different than the other infections. It can also lower the CD57 and mine was low last fall which surprised me because I have not had lyme flares (every 28 days) in years.
Maybe I will have to go to see F but I hope not.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
| IP: Logged |
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Yes, it should come with a picture and about a paragraph of commentary, including commentary of the level of biofilms seen. The GPs office should send you a copy. Fry Labs won't tell you anything.
Congrats! now you have more info about your case. Too bad the Gp can't pick up the phone and make a call, for crying out loud.
My doc thinks this bug and biofilm is why some of his patients' recovery seems very muddled. He uses Boluoke and serrapeptase and now lactoferrin for biofilm break down.
Posts: 3528 | From US | Registered: Apr 2007
| IP: Logged |
philly78
Frequent Contributor (1K+ posts)
Member # 31069
posted
My doc had me on Beyond Balance MC Bab 2, serrapeptase, nattokinase and wobenzyme, Golden Thread Supreme and something else (cannot remember) for it.
Actually just got me a script for alinia which is supposed to be going after this as well.
-------------------- When faced with pain you have two choices....either quit and accept the circumstances, OR make the decision to fight with all the resources you have at your disposal. Posts: 1000 | From PA | Registered: Mar 2011
| IP: Logged |
philly78
Frequent Contributor (1K+ posts)
Member # 31069
Click on pm lecture. Protomyxzoa is addressed on starting with slide 45 through 54.
-------------------- When faced with pain you have two choices....either quit and accept the circumstances, OR make the decision to fight with all the resources you have at your disposal. Posts: 1000 | From PA | Registered: Mar 2011
| IP: Logged |
Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
Where did you have your test done? Which lab? Cost?
Thanks.
Posts: 2238 | From East Coast | Registered: Jul 2010
| IP: Logged |
I think it depends on which test you did as to the report.
The PCR test would only say positive or negative and have no pictures.
The stain would include a picture and have some discussion regarding biofilms and pathogens visualized.
To be honest I am surprised you got a positive test result -- and if it is the PCR test only then I am even more skeptical.
I thought your improvement on the diet was primarily due to your genetic mutations you reported. Even with a positive test it would be difficult to say if the improvement from the low fat diet is because of the FL1953 or due to the interactions with your specific genetic mutations.
I do believe the FL1953 pathogen is real, but I have a hard time believing the high percentage of people who test positive based on a PCR test -- especially when PCR tests for lyme and all the other tickborne diseases have such low positive test results. I am really curious if the lab uses some different technology to get so many positives.
My question -- not sure if this has ever been answered -- is the FL1953 pathogen intracellular or extracellular? If it is extracellular (meaning not inside the red blood cell) then that might explain the higher number of positives. Most tickborne pathogens are intracellular and that makes it harder to get a positive PCR as I understand it.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I looked and it was the PCR test. Too bad. I wanted pictures.
Philly, I am trying to load that lecture. I live in the bonnies and the internet is very slow here.
My diet has not made a significant difference with the genetic mutations. The purpose of eating vegan it to lower sulfates and ammonia. I have test strips for sulfates and they are still at 1600 - as high as you can get.
Everyone, including me, was over focused on MTHFR which is not my primary problem, so I was not treating what needed to be addressed until I got that test back about two weeks ago. In fact, I am still just guessing at treatment until I get my results analyzed. I was not taking enough B12 or the right kind. I wasn't avoiding sulfur the way I should have. So my improvement was not just treatment of the mutations.
I don't question the results as a false positive. I had a lot of symptoms: low CD57, cold hands and feet (in winter), hoarse voice, dry cough, muscle and joint pain, extreme fatigue, headaches. . .
I am not sure if the stabbing pains were part of it- but all those symptoms are gone or nearly gone on stromectol and the diet. The only thing remaining is the hoarse voice now and then. I also have dry eyes and don't know what causes that.
When my CD57 was so low last fall, I thought borellia was back. This explains it. When I had trouble taking malarone but the fatigue was taking over, I panicked. This caused that too.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
| IP: Logged |
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Philly, that had a lot of information about FL1953 - protomyxzoa.
What was really interesting is one patient diagnosed with it had high urinary sulfates and dry eyes. I do too. One of the supplements she recommends it phosphytidleserene which I am taking for the mutations.
It was also interesting that urinary pain or irritation is a symptom. I had urinary frequency for a while. The first time I tried LDN I had to go constantly which is why I quit it. Perhaps it was causing a herx. Now I am ok with LDN.
My insomnia is getting better and I only have to go to the bathroom once or twice at night instead of every two hours. When I sent the blood work in for the test I had not been on any drugs for a month and the symptoms were stronger. I even had some pain in my teeth. I had a lot of nasal congestion which is a symptom I forgot about.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
| IP: Logged |
posted
I tested positive for this FL1953 bug by Dr. f. he said it is protozoa. No cure, but baxin and plaquilel are the treatment. Low fat diet is also necessary.
What are your symptoms?
My symptoms are sever burning pain all around back of my head, some section of my spine. sometimes neuropathy. insomia, air hunger, feeling sick... I don't have sweat or chill.
What are the symptoms for this FL bug?
Posts: 99 | From NJ | Registered: Mar 2010
| IP: Logged |
philly78
Frequent Contributor (1K+ posts)
Member # 31069
posted
Symptoms............
-Cold hands and feet, often clammy
-Poor to �pathetic� capillary refill, skin color changes ---- pale, dusky, hyperemic (red), purple, mottled
� HA, pain behind/in eyes
� Scalp sores
� Sinus congestion, PND, teeth pain
� Palpitations
� SOB, air hunger, dry cough, episodic and periodic
� Abdominal pain, nausea, IBS
- Bladder pain/dysfunction, interstitial cystitis
� Joint and muscle pain, weakness, twitches
� Profound fatigue, complete loss of aerobic exercise tolerance
The link above had link to a presentation which covered this. At the end of that presentation there were three links on the last slide....one of which was this:
If you go to the above link; there is a PDF dedicated to protomyxzoa.
-------------------- When faced with pain you have two choices....either quit and accept the circumstances, OR make the decision to fight with all the resources you have at your disposal. Posts: 1000 | From PA | Registered: Mar 2011
| IP: Logged |
surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Thanks for posting the above information- my LLMD has a call into F. lab for clarification on my results- next week I hope-
I got the test for around $350. no picture, either.
We are pretty sure I don't have Babesia, for a variety of reasons, but may very well have this-
I will have a difficult time with low fat diet- I am underweight, gluten free (necessary) and of course, always watch sugar.
I imagine protocol to include more biofilm busters, Ivermection, Alinia, between my current Tindamax pulses- we'll see--
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
| IP: Logged |
posted
I have FL1953protomyxzoa rheumatica, I do not have some of the symptoms that are listed above. I do have others.
I don't know where people are coming up with lists of symptoms for this?
I've been going to dr. f for over 4 yrs now. We all have different things that we feel. I thought I always had babesia and my symptoms are more to what 'that list' would be.
This 'bug' sends our bodies into overdrive to feel all sorts of things. It can create autoimmune diseases if left untreated (studies being done). It can also flip your thyroid out of whack thus you will have 'those' symptoms of hyper or hypo. Not always the FL1953 giving you symptoms, but your body being out of whack from it.
I do not do well with biaxin and plaq, so I take Zith and malarone. (diflucan too as it is an anti parasitic also).
Low fat doesn't mean NO fat. Just count your grams of fat per eating and see where you stand in what you eat. Lower it and try to get it around 15-20 grams a day. You'll feel MUCH better when you do this.
Thought is, that fat feeds the biofilm to make it thicker, thus hiding the buggers. Once you thin the biofilm out, med's can get to it better.
Whole foods, veggies, fruit... low fat. I don't look at it as a diet. Just a way of eating.
Everyone is thinking that this is a "NEW" bug. It's another type of Co Infection, only it's a stand alone type. When bugs bite us, they have a SOUP of things that infect us. If we do not have the DNA to fight some of these, thus we get sick.
This is only the beginning in finding what really is in our systems I'm afraid. This is not a true parasite and it's not a true protozoan. It's a little of both is what I have been told by F himself.
I am so 'glad' that your tests came back positive Nefferedun! You know what you are fighting now! And see how the eating low fat has made you feel better!?!
I am going to see him in a few weeks... wish you could make the trip at the same time, I'd have a car to pick you up~
-------------------- 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
| IP: Logged |
tricia386
Frequent Contributor (1K+ posts)
Member # 29623
posted
Wish I could get tested for 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
| IP: Logged |
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
No disrespect to anyone but the list of symptoms is vague & could be alot of things...
I was listening to thr radio last night & someone brought up the fact that the FDA says that 70% of all diagnosis' are not accurate. I don't know where this "factoid" came from but I could see that it's valid.
How do we know that any of the tests we take are accurate or what percentage of accuracy is in each test? It's different for each one. Lab errors are quite common. I think you would probably need to repeat the test a few times to see what percentage of times it comes up positive & then, you still don't know.
I don't mean to be a wet blanket but I'm pretty skeptical of tests - especially since the symptoms are so vague. There's comes a time when we have to stop grasping at straws. I don't know the answer & it's everyone's right to keep looking & spending. I just don't know if many of us will actually find the "answer".
If we follow a particular protocol - it may just very well be the placebo effect. It takes tme to see if nutritional changes will have a real effect on the body. It's not usually all that quick & simple.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
| IP: Logged |
philly78
Frequent Contributor (1K+ posts)
Member # 31069
posted
We don't really know sparkle. It seems like one big guessing game really!
I got the symptoms from the presentation linked to. It was in PDF format and I wasn't sure everyone could open that up.
-------------------- When faced with pain you have two choices....either quit and accept the circumstances, OR make the decision to fight with all the resources you have at your disposal. Posts: 1000 | From PA | Registered: Mar 2011
| IP: Logged |
posted
I just read that link. I do not know this lady dr. at all. I do not know where she is getting her info on FL1953 or treatment.
It is NOT the same as what I am getting with Dr. F.
Wow, so now dr.s are taking on their own swing on this and treating it as they think?
I guess we have that with lyme treatment too.
Please, I guess I just want to say... don't believe everything you read as there looks like there will be many copy cats on treatments and ideas out there now.
-------------------- 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
| IP: Logged |
philly78
Frequent Contributor (1K+ posts)
Member # 31069
posted
I believe she is going off of what she sees in her patient population. She also presents the case studies in the presentation from the first link I posted.
-------------------- When faced with pain you have two choices....either quit and accept the circumstances, OR make the decision to fight with all the resources you have at your disposal. Posts: 1000 | From PA | Registered: Mar 2011
| IP: Logged |
surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Sparkle, what you are saying about testing reminds me of what people say about Western Blots for Lyme.
I am looking at my testing for the FL 1953 like this:
Do I know I have biofilms from chronic Lyme, pockets of built up debris? Yes.
Do I know I have a significant parasite issue, based on past treatments, and what is happening to me on Tindamax? Yes.
So, my Fry test comes back positive, it confirms what I already *think* and my LLMD will put me on and oversee a protocol to go deeper with biofilm and parasites, hitting the disgusting various types best we can.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
| IP: Logged |
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I guess we can just try some of these things & see how we feel. I don't know if the tests really mean anything in the long run. Might as well flip a coin...
I went back into my medical records & I had 3 negative Lyme tests. I questioned my doctor about actually having Lyme & he said he was absolutely positive I had it. After taking the abx for 9 months & having no result - I don't really think I did. Why he told me I had Lyme - I can only guess.
It's good to study & try things but in the bigger picture - it just seems we have to try things & see how we feel. It's pretty complicated to try to ascertain what is actually making us ill. It could be alot of things... chemicals, GMOs, allergies, pathogens, parasites, fungus/yeast, etc. We just don't know for sure.
To me, the biggest proof is actually feeling better from trying something. The doctors don't really know...
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
| IP: Logged |
surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
I wasn't aware you never had Lyme and co. Hope you are feeling better through other methods of health.
I had a positive Lyme PCR blood test and high positive Bartonella henselae, but absolutely, with the shot immune system, other things can come in to play; Viruses, fungi, allergens, the lot.
I don't know enough or doesn't matter to me the debate on F. Lab, But I am glad for some, perhaps I am one, that it shines a light on deeper biofilm and parasite treatments, that may be a bigger piece than previously realized, again for some of us.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
| IP: Logged |
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Hadlyme, you are driving down there? Thanks for the offer. It is tempting.
I tested negative for bart but I didn't get tested until after I had treated it for a year. I am sure I had it because I had such a positive response to levaquin (except for getting tendonitis!). I think we are more likely to get a false negative than a false positive.
I often get better this time of year. Last year I was exhausted though. Profound fatigue. I also had not aerobic tolerance. In fact I would practically pass out if I exerted myself. I thought it was the babesia.
Stromectol made a big difference - and the diet. I spent the whole day walking around and working. I did not get tired. I was very aware of how I could walk out with a bit of energy. It feels good.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
| IP: Logged |
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I think there can be both false negatives or positives.
re: Last year I was exhausted though. Profound fatigue. I also had not aerobic tolerance. In fact I would practically pass out if I exerted myself. I thought it was the babesia.
This sounds like CFS to me. Maybe it's viral? It's really hard to tell which is what. There was a study that found that a large percentage of CFS patients had hidden lungworm. It's not easy to differentiate all of these things...
We just have to keep trying & hope we find the right treatment.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
| IP: Logged |
philly78
Frequent Contributor (1K+ posts)
Member # 31069
posted
I was reading up a bit more on this. What Dr. C states in the presentation really isn't all that different than what I'm finding Dr. F says.
-------------------- When faced with pain you have two choices....either quit and accept the circumstances, OR make the decision to fight with all the resources you have at your disposal. Posts: 1000 | From PA | Registered: Mar 2011
| IP: Logged |
annxyzz
Frequent Contributor (1K+ posts)
Member # 20404
posted
DITTO everything Sparkle said . There is nothing clear about these infections except that they seem to be mysterious and resist everything thrown at them . It appears there are many possible infections assoc with lyme and no certain effective treatment to permanently eradicate any othem , in MOST cases. That is why I would rather work with herbs than drugs if possible .
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
| IP: Logged |
posted
My husband and I both had the PCR test from Fry Labs for Protomyxzoa.
I was "not detected". My husband was "detected" in our results.
Hubby functions like a normal healthy person. He is also off all tick borne disease meds.
Meantime, I can feel better for months and then have a downswing for months.
Posts: 671 | From Fort Myers, Florida | Registered: Jun 2009
| IP: Logged |
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
The way I understand protomyxzoa is it is an opportunistic infection. You can carry it for a long time with no symptoms. The older you get, the less resistant you are too it.
It seems like people are wondering if this is real. I would question it too if I were not responding to his treatment. I am a lot better. My son was working with me today and he notice I have a lot more energy. I spent the whole day gardening.
Sometimes when I am walking I feel almost like I could jog. Instead of nearly crawling up the stairs and gasping for breath at the top. I can almost run up them.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
| IP: Logged |
posted
nefferdun, what is your treatment for this bug? I have a few of those symptoms listed above.
Posts: 99 | From NJ | Registered: Mar 2010
| IP: Logged |
posted
nefferdun, I'm flying down but will have a car the whole week I'm there. It's a vacation and to see doc again.
This bugger Does Trigger CFS and the likes if left untreated. There are many studies being done right now with patients on these factors. My bets are if I don't stay in treatment, that I could go towards ALS or MS is my guess and doc's too. My dad died of ALS and so did an aunt.
Nefferdun is correct in the thinking that the older we get the weirder this gets. But yes, we can live with it in remission and live with it period.
The Dr. C that did that presentation is NO where close to what Dr. F says in his treatment. I am going to print out that presentation and show him. Each to their own. We see it in lyme treatment and now with this FL1953.
I've always said, we each need to find what works for our bodies AND our minds. I was treated very aggressively from a lyme ny llmd my first time and almost died with his protocol being so full of so many drugs. I now have found someone to treat that doesn't want to kill my body, just the bug. And he doesn't 'sell' anything along with it.
Each person has different treatment for this rainbow. It's basically like bab's treatment only low fat diet for me.
-------------------- 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
| IP: Logged |
philly78
Frequent Contributor (1K+ posts)
Member # 31069
posted
In looking at all the links I posted Dr. C and DR. F both suggest a low fat diet....the mcdougal diet.
Dr. C suggests anti parasitic agents and addressing biofilms.
Dr. F states that this bug has profound biofilm formation. He acknowledges some herbals work better than abx.
Dr F said (per the links) Ivermectin and Flagyl are helpful....Antiprotozoals or anthelmintics may be good options. Protomyxzoa leads to vascular disease and chronic inflammation. There are coagulation impairments and retrograde venous blood flow.
They both state that this bug causes strong herx reactions.
Interesting to note: In some people where they had seen the organism and biofilms, they could not find the organism after being on the McDougall diet. Unfortunately, after starting to eat higher fat content, the microbe was again present and visible.
All of this is taken from the links I have posted in this thread. I don't really see what the big differences are and I would love to hear what Dr. F states. I hope you report back to us.
-------------------- When faced with pain you have two choices....either quit and accept the circumstances, OR make the decision to fight with all the resources you have at your disposal. Posts: 1000 | From PA | Registered: Mar 2011
| IP: Logged |
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Hadlyme, I wonder if you could sneak in a question for all of us trying to figure out the treatment protocol using ivermectin. I assume he means to take it every day but for how long?
Some of the interesting things I learned in the links philly gave are: protomyxzoa multiplies 100 times faster with fat!
It lives OUTSIDE the red blood cells. If this is true it is not like malaria so maybe it does not need continuous daily treatment for at least 5 months until all the red blood cells turn over.
As you never get fully rid of it, treatment is management rather than eradication. I am feeling pretty good now. If I take this for a whole month, maybe it will be knocked down well enough that I can manage it taking ivermectin something like three days a week. Then after awhile I will only need to take the iver once in a while.
Another interesting thing I learned is it likes folic acid. I was taking methylfolate but my methyl cycle tests show B12 is what I need most so maybe I should quit the folate.
Propolis and lactoferin are supposed to help get rid of the biofilm. I might throw those two into the mix. Xylitol is a sugar substitute that breaks up biofilm so it would probably be a good idea to eat a little every day. It prevents plaque on teeth but according to the good health guy, Dr. K recommends a nasal wash using part xylitol. He says,
"Xylitol bloats bacteria and they then die. Molds and staph are drawn to xylitol and are then killed". That is interesting. I love xylitol on berries.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
| IP: Logged |
posted
I will ask him anything... so yes, I'll ask him.
I can not tolerate ivermectin, so he will never put me on that one. Diflucan is working the same way with me as ivermectin.
I was always under the thought that it IS in our red blood cells. I will get that straight too.
What I mean by what dr f does compared to dr. c... is that he does not believe in treating with strong drugs and many of them. He likes us to have gentle herxes and gentle treatment. None of this mega doses. She had on there like 3-4 types of one drug. He is the one that found that the Mcdougal diet works. I was going to him for a year before he started asking us to try it. That was 3 yrs ago.
He starts people out with the smallest of ivermectin. Everything is gentle. Kelmo has a daughter that goes to him.. she has some ideas on what he does with ivermectin.
We have to remember. He is not treating lyme. He is treating chronic pain. He has found this because of treating pain and weirdness in his patients.
He is the one that has seen under the microscope that fat reduces the thickness of the biofilm. When we get low fat, it thins it out. It will be fun to hear the new things in the past few months I've been gone in what he's doing with patients. We're all his study victims and I do not mind.
I will report back on what he thinks of that paper. He's not god, but with this disease, I will stick close to what HE says only....
There is a special meeting for dr.s/phys/healthcare, this Sept in Phoenix that he will be speaking at. Dr. B is also speaking at it. The local lyme group is helping with is. I'm thinking I want to be down there to help, but might not be able to. It is not open to the public, only medical personal.
-------------------- 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
| IP: Logged |
posted
His website has recently been updated. This is from the lab website. I would recommend getting into both. He has a Foundation also. Chronic Diseases..... There's also twitter for fry labs. If one follows all of these, it's coming from the source itself. Not another dr. that has taken it and put their twist on to treatment. And calling the lab will also get one answers too. Not to treatment plans, but for questions on the protozoan itself type of questions.
-------------------- 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
| IP: Logged |
philly78
Frequent Contributor (1K+ posts)
Member # 31069
posted
Thanks for the info.
I'm actually treating this thing now but taking nice and slow.
-------------------- When faced with pain you have two choices....either quit and accept the circumstances, OR make the decision to fight with all the resources you have at your disposal. Posts: 1000 | From PA | Registered: Mar 2011
| IP: Logged |
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Hadlyme, I am really excited to hear what he has to say. I thought it was inside the red blood cells too so it will be good to clarify that.
Everything for me gets better day by day. I am sleeping much better, I can think more clearly, I have more energy, seldom get a pain and would describe myself as being in "good health" if I didn't know how tenuous this can be.
Something strange is I have oilier skin and I am getting pimples.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
| IP: Logged |
posted
Nefferdun - I'm doing the diet and I have oilier skin too, and am getting pimples.
I just bought some clearasil! It could be from the change of seasons though. I haven't has this happen for many years.
Posts: 845 | From Northeast | Registered: May 2011
| IP: Logged |
philly78
Frequent Contributor (1K+ posts)
Member # 31069
posted
Weird! My skin is breaking out too but I've always had oily skin so that's no change.
I figured it was just another route of getting rid of toxins. Aztec indian healing clay works well to help clear the skin. You mix up a mask.
-------------------- When faced with pain you have two choices....either quit and accept the circumstances, OR make the decision to fight with all the resources you have at your disposal. Posts: 1000 | From PA | Registered: Mar 2011
| IP: Logged |
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
There is a chiropractor here that does LLLT with a real laser (not LED which I have) for $15 a session. He says it clears up acne and I am tempted to get the "teen age" treatment.
I think it is detoxing too. The methyl cycle mutation supplements probably are pushing a lot out too.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
| IP: Logged |
springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
Regarding break outs Always have had break outs and bumps On my skin while sick and while treating And oddly After years and years
Since I started ivermectin my skin Is a complete new creature !! I am so happy . It's clear and smooth and pours see Reducing and all that good stuff I never thought I woukd see Again ..
Even my doctor noticed. And I had big pouts that filled up with gunk no matter how often I washed and I got these deep sore like bumps that were needing literally digging out . I had also little white round bumps that aldobwre not poppable so had to be razored off . Then I had oily sweaty yucky blotchy skim that woukd not Heal znd was loosing elasticity . Then I had normal pimples And black heads ibwas using one of those metal removers to not damage my skin too bad . Yes it was bad !! Before being sick I had do many compliments on my young smooth looking vibrant skin !!
this last six months has been nothing but looking better and better and I can't believe my pours just fontbfillmip anymore Like magic and all the old issues anf scars are healing and Evening out and no more breakouts otmromied bumpies or Deep sores . None !! It's magically .. I just stare in that magnified mirror unused to Need to at least be presentable and even magnified There is Nothing to work on
Also I used the new product that grows eye lashes and eye brows as after the intensive integrative treatments and IV s I did a couple years ago I lost my eye brows to about 50 percent and eye lashes too
With this product and my new healing and growing self I believe .. My eye brows got growing too much .!!! I had to Slow down as they were growing more all around as well as long .. My eye lashes too thicker and longer but I would never stop those as they always gave been a bit short .
I believe some of the treatments especiislly IV can be just like chemo ..
Anyway. My skin has improved 100 x So don't give up and get over and through the Hump of ivermectin. I had the skin improve way before Adding doxy so I know it wa the ivermectin
Loving my skins feel even as mich as look When taking a shower I wash my face and Just say wow .. It's smooth . Its such a nice New feeling .. I hope it stays !! It's been Like four to six months.
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
| IP: Logged |
springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
Yes Keep up on detoxing technichrs during Any treatments !! Sometimes needing more Than others
See thread called Detox Suppor Thread for a long list of detox Protocols started by me and added to by members here Great thread !
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
| IP: Logged |
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
That is so exciting about your skin springshowers! I was looking better when I started the methyl cycle supplements but since starting the ivermectin I got the break outs and oiliness. I hope it is pushing something out and I get over the hump.
I also have had the strange small white lumps on my face that have to be "surgically" removed. They seem like small cysts - not infections.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
| IP: Logged |
surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Okay, VERY CONFUSED.
My LLMD just spoke to Dr. F THIS WEEK, clarification on my test.
I was told Ivermection is no longer being recommended for treatment because 'not sure of long term effects of this drug.'
He recommended a list of 'regular' Lyme antibiotics, and Malarone.
I'm not happy here- don't understand. What about the protomyxzoa species? Filaria worm type?
Frustrating. Spent $350 on this test, feels like a big back pedal.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
| IP: Logged |
kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
This is concerning
Posts: 2903 | From AZ | Registered: Feb 2006
| IP: Logged |
surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
I think so too!!
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
| IP: Logged |
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
re: It seems like people are wondering if this is real. I would question it too if I were not responding to his treatment.
I am not questioning this factor... It's just that all of this is so complicated - we just don't know. I guess if I could trust the tests - but even there - they aren't accurate. These doctors are trying to help but they don't really know, either.
Hidden lungworm that was found to be present in many people with CFS is in the mucus of the lungs. I don't know why this avenue of research has dried up but no one seems to test for this of even be aware of this. I'm sure there are many bugs, allergies, yeasts, genetic mutations, chemicals, etc. that can cause the illnesses that we suffer from.
Finding how to treat & what works is really complicated. What makes it all harder is that the placebo effect is real - so, that can influence our response to treatment.
I hope people are on the right track but all these treatments & theories do change quite often. It's just that I've been dealing with this since I was in my 20's & I'm 50 now. I know that no one wnats to think it will go on forever but we just don't know enough to treat alot of this. We can follow a theory for a while & hopefully it will help but it's tricky.
One peoson who may test positive may be fine while another is ill. How can something like this be treated if we have no clue if we are fighting the right bug, chemical, allergy, getenic issue, etc.?
BTW - I got pmples, too when treating parasites. I think the toxins can come out through the skin.
Treating parasites is really important. I don't know if it's a good idea to take ivermectin for a long time. I don't think I'd want to take any drug for a long time - or even an herb. It's probably best to rotate the treatments so whatever it is does not become resistant. I would not take antibiotics for a long time, either.
Look into the research being done on the human biome. It's important to not kill off a big part of the immune system by taking an antibiotic. That's just my opinion... I'm not a doctor.
Fats probably have an important function in the body. I don't know if I would limit them for a long time. We all have to study this & make our own decisions, though. There are other ways to break up biofilms. I believe that some people have taken auravedic herbs like triphala. They also have alot of herbal anti-parasite treatments from India, too.
There are many options. It's alot of trial & error... The body is constantly changing & adapting. I think the treatments have to change & adapt, too. I'm not against drugs - they can be very effective but I don't think I would take something that damages the human biome for a long time.
The bugs just get resistant & then you are back at square one with less of an immune system to fight these things off. Like I said - just my opinion... I'm not a doctor.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
| IP: Logged |
posted
I see him soon. I never have been on Ivermection for my FL1953. I was one that he didn't put on it.
I do know that he has said it's not a true protozoan, and not a true parasite. It's a new species of a combination of these both.
I've always been on Zith and Malarone. Diflucan too. Blood pressure pills and diuretics for the inflamation it gives me. B12 Shots also. We tried Armour for hypo thyroid for a year too.
Foods that we eat are one of the most important factors with FL1953.
Why are you thinking you're back pedaling? Just because Ivermectin is not recommended now? There are others ways to control this besides that drug.
I was always glad that he didn't want me to try 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
| IP: Logged |
surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
hadlyme, thanks for responding (as you are working on this close up)
I guess I thought I had it all figured out- Ivermection, Alinia-
I was surprised by the list of antibiotics- I was hoping not to go back to some of those, ect. I am currently on Bicillin and Tindamax, I think I had it set I would just be adding anti parasites.
I have an appt. Monday w/my LLMD.
Already doing Bolouke and Triphala.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
| IP: Logged |
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
I have to chuckle a little but bc maybe the Fry lab doesn't know that a lot of people have been on long term abx, for years?! And Ivermectin seems to have one of the best safety profiles. Maybe they are just extremely cautious when it comes to recommending tx plans to other docs. Interesting though, bc I'm sure doxy, malarone, etc have similar "unknown" long term safety profiles.
From what I have heard/read about Ivermectin, seems a lot safer than other stuff we have all likely tried.
Posts: 3528 | From US | Registered: Apr 2007
| IP: Logged |
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
CD57 - Yes, I agree with you about ivermectin. I studied it & from what I read - it's pretty safe. I'm always seeing warnings about taking abx, though.
re: Diflucan - it's a medication for yeast. I'm not sure how blood pressure pills and diuretics would help with inflammation. I haven't researched it extensively but I read that tumeric is very good for inflammation. It may depend on the drug but I don't know. Sounds a bit odd. Who knows?
If/when I take a drug (or herb/supplement) - I always like to study it thoroughly. Sometimes, the side effects can be worse that the illness.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
| IP: Logged |
posted
Because of this 'disease', my blood pressure will rise for months at a time. It is one of the symptoms(in older people! 57yrs here!). A low dose of bp med's keep my ticker working just fine. No side effects.
My inflammation comes and goes as well (another symptom of this). A diuretic every 3rd day keeps my fingers and body from 'plumping' up as much as this bug wants it to.
I had a horrible herx last year on Diflucan. After 7 days straight on it (for Valley Fever,lung fungal infection from dirt in AZ) I had a herx from hell. I ended up in the ER and after a spinal tap, found to have Viral Mennigitis. Protein in spinal fluid.
After that event, he decided that diflucan effected me as an antiparasitic, which it is along with fungal/yeast. It not only helped the fungal Valley Fever, but gave me my 'normal'head spine type of herx only over the top horrible.
This is why he said no ivermectin for me when Diflucan effected me that strongly.
I do NO other 'biofilm' busters as you all seem to take.
I'm feeling ok with just thinning out the biofilm with low fat eating, which is easy and healthy.Can't get any more natural than that.
The lab/dr does know how all drugs effect us long term,that was quite the statement. If you all want to take a drug that hasn't been studied long term in humans as ivermectin, be my guest. When I hear about others taking horse ivermectin I cringe at what guessing one is doing with their body.
Do any of us have a medical degree in here? Do we all want answers? I for one will listen to medical personal that are studying and doing scientific research on all of this.
As I've said before, do whats best for your body and mind. We are ALL different in how we treat and how our treatment effects us. FIND WHAT WORKS. I have
-------------------- 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
| IP: Logged |
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Interesting about the Valley Fever. I'v read about it. I'm not sure that the anti-fungal caused the viral infection. Do you think they are connected?
The theory about detox is (as posted by GiGi awhile back)
human>parasite>yeast>metal>bacteria>virus...
They are all interconnected. I haven't read about alot of doctors who treat in that manner as to kill off pathogens in a specific order, though. Maybe Dr. K & I don't know if any other doctors actually treat in that technique.
I've been to ALOT of doctors & spent ALOT of money. Many people here have. They don't always know. They are just guessing - just like us. I can read scientific studies & research herbs & drugs, too.
I don't think the veterinary meds are that different than the ones you get at the drugstore. I recently read that 60,000 died of taking Vioxx. It might even be higher...?
I believe that Fizer or the major drug companies make Ivermectin & it's the same thing in the horse paste as what you pay $20-40 a pill for - same dosage proportion & everything. I read the studies about Ivermectin - they tested animals with something like 60 times the dosage or higher & it was safe. I'd have to go back & pull up the studies but they are on the internet if you want to read them.
I also read that when the doctors go on strike (like in the UK) - the death rate declines. The Western medical system can be directly attributed to alot of death. So, the doctors don't know everything...
If a doctor gave you a drug & you ended up in the ER - I'd say he may not know what he's/she's dealing with... Sorry, I don't mean to pick on you or your beliefs. I've just been studying all of this for a while now. I see what people here go through. I don't want to minimize anyone's suffering. I just don't think alot of the doctors know what they are dealing with or how to treat it.
Just because they have a degree doesn't mean they are smarter or better. There's alot missing from the studies that they go through to get a medical degree. They are mainly taught to dispense drugs.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
| IP: Logged |
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
As an additional thought - we have to study everything & double check what doctors tell us. Basically, we really have to think for our selves. Sad but true.
From the link I posted above about Vioxx -
Whistleblower Dr. David Graham, in testimony before the US Senate, estimated 88,000 to 139,000 Americans experienced heart attacks as a side effect from the drug, and 30 to 40 percent of these died. That would be an estimated 27,000 to 55,000 preventable deaths attributed to Vioxx.
Vioxx at its peak was being taken by 20 million Americans. In 2003 sales of Vioxx totaled about $2.5 billion. Vioxx prescriptions were 19,959,000 in 2003 and 13,994,000 in 2004, a decline of about 6 million prescriptions (about a 30% drop). (Source: IMS Health)
Nobody is saying it, but it looks like Vioxx did kill many thousands of Americans.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
| IP: Logged |
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I have spent the last 3 days working and I do not feel it. I have so much more energy and motivation. I have not felt this good in years.
The babesia drugs and abc were not getting me "well", -just keeping the beast at bay but I was still extremely tired all the time and I could not think. I got to the point I could not tolerate the drugs any more and I was really worried that I would just die. I broke down crying one night a couple of months ago. I was literal collapsed in hysterics. I could not sleep and I thought it was all over for me.
I realized my thyroid had gone hyper and started LDN again. Now I am off all thyroid meds. I have also been taking the methyl cycle mutations supplements and the hyroxy B12 is amazing. I feel like the energizer bunny.
I was having some pain in my right knee and the insomnia was hanging on so I decided to start stromectol again about 3 weeks ago. That made a huge difference. I was taking 12 mg a day for two weeks but am now only taking 6 because I am running out. I placed an order and it takes 3 weeks to arrive.
I have been on the diet over 3 months and it seems to be very helpful. I think I could get by with just the diet if I was really strict about it.
Anyway I sure do feel like a different person. Today I cleaned my whole barn, rode my horse, planted in the garden, shopped, cleaned the truck, cleaned the bathrooms and cleaned the kitchen. I didn't think I would every feel like this again -
They may not know the long term effects of ivermectin but they don't know the long term effects of most of the drugs I have taken. Many of the side effects of those drugs that they do know about are very serious. I am going to keep taking stromectol. My plan is to take it four months and then taper off.
I will stay on this diet for the rest of my life. Hopefully I can add a few fats back in like nuts and seeds. I do miss those.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
| IP: Logged |
kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Just responding to a couple of things Sparkle7 mentioned. As an AZ native, we are as aware of Valley Fever here as Lyme disease is in the east coast. We never routinely test for Lyme here, but Valley Fever is the first thing checked for symptoms similar.
Valley Fever is a fungus. It lies on the desert floor, along with other viruses. When we have our summer dust storms, the crud on the desert floor are moved through the air. Valley Fever cases go up.
Every time the dust storms move through, if I am out and about, I will invariably end up with a viral pneumonia. Never tested pos for VF, though.
As for ending up in the ER. Everyone is different. Dr. F says that he has some people start right up on 9mg of Ivermectin and have slight reactions. My daughter took ONE Ivermectin a day for four days. By day four, I had to take her to the ER. She was in a fetal position.
She ended up going back on it, but starting out a 1/4 twice a week. It has taken her ONE YEAR to get up to 9mg daily. She herxes big time with each increase.
She is also on pyrantil pamoate. She is passing tissue in her urine. She has not reported any worms. Her doc said one of his patients was on 12mg/daily of Ivermectin for four months before worms came out.
All other blood tests are still good. So, we will keep on this path.
She is also on the low fat diet. Actually, she went vegan. She doesn't have food hangovers like she used to. She is conscious of every morsel she puts in her mouth. She even took a nutrition class at the college and monitored everything she ate to make sure she was getting the proper nutrition.
She really, really wants to be well. She has not had a life.
Posts: 2903 | From AZ | Registered: Feb 2006
| IP: Logged |
annxyzz
Frequent Contributor (1K+ posts)
Member # 20404
posted
Nefferdun : google "lyme the roller coaster ivermectin" you will find a story and blog about a lady who had lyme and got her life back again with ivermectin . She takes it off and on .Her doc in another country told he iver is used for lyme in other countries.
If you google : "lyme disease Ivermectin I give that to my horse " you will find another story of a different woman with lyme . I found other websites and blogs with many people taking it for lyme or morgellons . A google search can produce interesting results . Also if you google "ivermectin babesia " it appears ivermectin has been given by African gov't to citizens for babs and I beleive for parasites .
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
| IP: Logged |
annxyzz
Frequent Contributor (1K+ posts)
Member # 20404
posted
Have to wonder if VIT C and salt would kill this organism . When I read GLM 's story I am amazed that she had 4 years of ABX anf did not begin to get better til she started attacking "lyme " with antiparasitical herbs and salt and VIT C .
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
| IP: Logged |
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I read alittle about Valley Fever. Sounds awful. This website has alot of good info-
I just didn't understand how it could be related to viruses if it's a fungus. If someone could post - I'd be interested in reading about it. It must have been bad when they had that huge dust storm about a year or so ago. I think it was in Phoenix but I might be mistaken.
The anti-parasite treatment made a big difference for me. I don't think I have babs or protomyxzoa but I don't know. I think alot of symptoms can be related to parasites.
I had no idea I had parasites at first. Whatever anyone says - you really have to start off slowly when treating them. You can actually die from the die-off... No joke. Most doctors do not know this so they either think you are nuts for asking for an anti-parasite protocol or they may give you the wrong dosages of drugs or herbs to take.
In my experience, you have to be very careful & ramp up the dosage slowly - even if it takes years. It took me 2 years to treat parasites. It was very difficult but I'm glad I did. It wasn't a complete cure for me but I was able to improve my health. It is very hard, though.
I don't know anything about this new Fry pathogen but I am reading what people are saying. I don't know if cutting out fats will help but it's worth a try. I don't know if it will have an adverse effect later. It's best to give it some thought.
Fish oil has many benefits & the body does need some fats to function. Some vitamins are fat soluable & you need to eat fats to absorb them. I don't know if cutting out all fats for a long time is feasable.
I'm sorry about your daughter, kelmo. It must be very hard. Heavy herxing is not necessarily a good thing but it probably indicates there's a problem that needs addressing. Herxing can put too much of a strain on the body so it can be counter productive. I hope you find a way to treat whatever it is.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
| IP: Logged |
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Kelmo, your daughter sounds very smart and determined. It sounds like she is getting better. If she is well enough to take a college class then her brain function is better than most of us. I would get her the methy cycle mutation test. That makes a huge difference.
Annxyzz, I saw the first blog when I was doing a search trying to figure out how much ivermectin (or stromectol) to take. I was worried about her comment that it builds up in the blood and become poisonous if you take it every day. I do not completely buy that because it has a half life of less than 18 hours.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
| IP: Logged |
kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
sparkle...thanks for telling me you treated for two years. Did you ever see anything come out? Currently there is some substance in the urine, but nothing that looks like worms.
She is not cutting out all fats. I think that would almost be impossible. Just being smart about what fats.
Last year, in Phoenix, we saw MANY dust storms, including that giant one you mentioned. It carried the wierdest stuff in that.
My daughter had a pretty manageable year, but did too much and relapsed. College is a struggle. She is having some brain issues right now. She will take a break.
Posts: 2903 | From AZ | Registered: Feb 2006
| IP: Logged |
annxyzz
Frequent Contributor (1K+ posts)
Member # 20404
posted
nefferdun, what are you doing specifically to trea this ? Ivermectin? You stated that you are on low fat diet . Anything else?
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
| IP: Logged |
annxyzz
Frequent Contributor (1K+ posts)
Member # 20404
posted
I can not see how YEARS and years of ABX can be more destructive than ivermectin .
Also, Dr F states in an interview that he thinks minerals and specifically magnesium contribute to biofilm. Unfortunately I do not know if this is conjecture or FACT - and if I cut magnesium I have very tight muscles and tendonitis in my knee .
So.. do we throw out fats and magnesium , and minerals ? There is nothing clear except that this guy found an unidentified organism that he really knows nothing about .
I would like to know if all lyme people are showing positive for it .
He implies in interview it may be the underlying causal factor for most autoimmune diseases . Frankly , I do appreciate his research . His interview states that he knows no way to eradicate the organism , but that he had been using ABX . If they do not eradicate , then why would you use them long term ?
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
| IP: Logged |
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I also take stromectol, human ivermectin.
You get fats in this diet. You just limit them. 1/2 cup dried oatmeal has 2.5 grams fat. A lot of foods have some fat.
As for the good fats, you still get them. I eat chia seeds which are the highest source of omega 3 fatty acids. If you take a flax seed capsule it is just a fraction of the 15 grams you are allowed a day. 15 grams is about one tablespoon so if you completely cut out all fat, you could gulp down a tablespoon of flax oil - much more omega 3 than you would get in a normal diet.
You don't eat animal fat. You don't saut� in fat or drench vegetables in fat. You can't have avocado because it is loaded in fat. So are nuts - they also have a lot of arginine. Seeds have a lot of arginine. Pumpkin seeds are the worst.
So there are a few "good for you" foods that you cannot eat. Plenty of good for you foods that you can eat. With the CBS mutation I am supposed to stay away from cabbage family, garlic, onion, vinegar. . . It is hard.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
| IP: Logged |
Why use antibiotics or other treatments if they do not erradicate? It comes down to bacteriocidal versus bacteriostatic.
With no treatment pathogens multiply -- with bacteriostatic treatment the hope is that at least the infection will be stabilized and not get worse. Bacteriocidal treatment attempts to erradicate the infection.
Other than the common cold not very many infections go away on their own.
Modulating the immune system is another option. But it depends on the severity of the infection and the nutritional status of the person as to whether the immune system can be boosted or not. And in some cases that can even make the infection worse if it takes on an autoimmune component.
It would be nice if there was meaningful research on tickborne diseases but the majority of research is only in regards to acute infections or based on animal models which may not be relevant for humans. And when it comes to coinfections there are only a couple of journal articles discussing people that have lyme plus babesia or lyme plus another coinfection.
Everyone has to find their own path in regards to treatment because there is no one size fits all treatment. When many patients do not even have a clear cut list of active infections it becomes a guessing game.
Just relying on one doc to get someone well is not very realistic. Both the patient and doc need to be actively involved in treatment. And learning from other patients and other docs from forums such as this one becomes even more important the longer someone has been sick in my opinion. There are almost always multiple factors involved and just focusing on one infection or one approach to treatment often does not work.
It is great when people who recover their health come back to the site and help others, but too often they attribute their recovery to just one treatment when in reality it could easily have been the whole sum of their treatments that led to their recovery.
People have different responses to the same treatments at different points in time for example -- and there is no way to know if that is because a particular med might be effective on multiple infections and at any point in time it is hard to say which infection is predominant due to symptom overlap.
Going to stop for now.
Just wanted to emphasize that any treatment that helps is valuable but that real lasting recovery is an ongoing process and usually involves treating multiple pathogens with multiple approaches.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Neff, are you still eating poultry, fish and dairy?
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
| IP: Logged |
kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
I agree with Bea. Some of the treatments my daughter has done were initiated because I did research and discussed it with her doctor. It really does take a village.
Posts: 2903 | From AZ | Registered: Feb 2006
| IP: Logged |
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I agree with Bea too. I tested positive for 3 infections besides protomyxzoa. They had to be treated individually. I hope this is the last one - but who knows. I have been fooled before.
Catgirl, I don't eat any meat at all. I do eat a little dairy and egg whites. I just can't get over the hump of not having plain yogurt now and then or a bit of cheese. Sometimes I even put a little goat's milk in my oatmeal.
If I lived near a city I would take a vegan cooking class but there is no such thing here. When you put the CBS mutation together with the F diet, it is so restrictive, I don't know how anyone could follow it perfectly.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
| IP: Logged |
surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Hi - I thought I would update, as I appreciate others who are sharing.
Saw my LLMD this morning (whom I like a lot) on my positive Protomyxzoa test.
It did have a color picture, showing the biofilm and 'whatever that thing is'.
We are doing a combo of Ivermectin at a higher dose 1x a week, Alinia, Malarone- May later mix it up and add Artemesia, cryptolis, Bab-2, etc. I have some Bonifuge. I have already been on Albendazole and Tindamax. Bolouke.
I have never treated for Babesia, much is new to me. I am a little afraid that if I do indeed have Babesia we will stir the beast, but I guess that's a good thing? I have been holding out I don't have it, we shall see. I was infected by feral cats 15 years ago. That's my best recollection, never having ever seen a tick. Plenty of mosquito's.
The low fat diet- I was told Dr. F says Yes, but the LLMD's are not saying 'Yes.' Well, it is stuck in my mind now, but,
weighing 99 pounds, gluten free/sugar free, not thrilled about cutting fats- and am prone to yeast.
But, we will see-- I looked up high protein low fat and saw:
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
| IP: Logged |
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Kelmo - yes, I did see things come out. That's how I knew I had a problem. I took photos & sent them to my doctor. He told me to contact the CDC... (which I did not do). He had no idea about ivermectin or treatments. I had to ask him a few times & he gave me the wrong dosage.
Eventually, they subsided but it took a long time. I will probably do an anti parasite protocol a couple times a year just to keep any possible eggs from hatching or kill any worms/bugs.
Bartonella can be from fleas, too. I think it's actually the fleas that spread it - not the cats... The fleas can live on cats, though.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
| IP: Logged |
kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
My daughter was infected with lice, repeatedly, in the first grade. It was VERY frustrating. One little girl in her class was not getting the proper treatment.
I often wonder if my daughter got something in Mexico. We took her across the border and ate some mystery tacos from a guy cooking in a cardboard box. My daughter was starved and we ran out of snacks.
But, it is likely we were all infected by mosquitoes on a lake in Oklahoma. We all came down sick three months after that with "epstein barre virus" It was pretty much the illness du jour.
If things are coming out in the toilet, my daughter isn't letting me see them.
Posts: 2903 | From AZ | Registered: Feb 2006
| IP: Logged |
posted
Annxyzz.... If you do a search in here you will find all sorts of info on the Fry bug and why no magnisium. Under a microscope they are seeing that magnisium and fat build up... makes thicker, the biofilm around the protozoan. I for one believe microbiologist when they have spent the time to research this fact. They aren't out selling something, they are telling it as they see it.
I used to think I couldn't go without mag. but I haven't supplemented now for over 4 yrs and I'm doing just fine with my muscles. I have never tested low on it either. This goes against what I had been told by other llmds, but I'm listening to this new info and everything is fine.
And yes, you do know that a person can not get rid of babs, lyme and FL1953 completely don't you? We can put them into remission, but NONE of this can be totally eradicated.
Alot of Dr. F's patients are NOT on any abx. They are doing just the low fat eating and have herx's and are getting better. So it's not ALL abx for everyone. I have decided to do a maintenance thing with my rotation of zith, diflucan, malarone. My choice.
I had been treated in 1999-2001 with Dr. H in NY. I almosted died from all the stupid strong drugs that were told to me that I had to take.
I was then in remission for almost 9 yrs of feeling great, not taking anything. Then it hit me again, and all symptoms came back.
I have always worked fulltime, look normal, act normal...exercise, eat well. I still am the same now. I feel pretty good. Just some days I can tell I have something 'in' me.
My herx's are always in my brain/spinal cord. So when I herx'ed with the diflucan treating valley fever, it was a big one. I now know that when I have that head/spine feeling, that I can be positive for menningitis. I had one ER dr. come up to me and ask me if it was lyme mennigitis as he was a friend of Dr. F. I was in the hospital for 4 days with that herx.
The FL1953 protozoan will not be 'seen' by the naked eye.
Search in this forum for FL1953 or Fry Bug, Protomyxzoa. Please don't 'knock' something just because you do not know the whole history 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
| IP: Logged |
annxyzz
Frequent Contributor (1K+ posts)
Member # 20404
posted
hadlyme : I did not "knock " anything . I read the doctor' s interview more than once . He mostly talked about HIMSELF and his own OPINIONS and speculation on the organism he beleives he discovered and its "possible " link to autoimmune illness . The interviewer asked many questions for which he had no definite answers . He did emphatically state that he has no ability to eradicate the mystery organism and is experimenting , which implies his info is quite limited. That is fact and not a criticism .
Hopefully he can cure your "spine herxes " , but we are glad you manage to work a full time job and exercise and that you feel you resemble a healthy person with lyme disease . Maybe the doctor will help others in time.
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
| IP: Logged |
posted
When I want to learn about anything new, I usually study it from every angle. I read as much as I can, not just one article.
I would urge you to do more reading on this subject if you are going to state opinions. hat you have said is far from truth about this dr.
I do NOT have lyme. As my name inplies, back in 2004 before I met Dr. F I even felt I didn't have 'lyme'. I knew I had something like it, but not a true lyme.
We all can have herx's from killing vector borne diseases. I'm glad my doc doesn't believe in strong herxing. What happen with me last year was from treating the Valley Fever with my FL1953 too strongly. We know now not to do that.
Live and learn... that's all any of us can do.
Best wishes in your health matters... and again, we all need to find what's best for our bodies and our minds. What works for me will maybe not work 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
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
Printer-friendly view of this topic