CD57
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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.
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sparkle7
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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
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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
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sparkle7
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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
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sparkle7
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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
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nefferdun
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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
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kelmo
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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
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annxyzz
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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
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annxyzz
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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
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sparkle7
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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
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nefferdun
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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
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kelmo
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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
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annxyzz
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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
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annxyzz
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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
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nefferdun
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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
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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
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Catgirl
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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
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kelmo
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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.
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nefferdun
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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
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surprise
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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
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sparkle7
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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
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kelmo
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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
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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
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annxyzz
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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
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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
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