There are special threads for people doing rife and treating parasites. I hope we can keep something going for protomyxzoa because it is the neglected infection that we don't know much about.
I get the impression many LLMD's don't take PR seriously. It is almost as if the lyme community looks at PR treatment the way the mainstream medical community looks at chronic lyme treatment - quackery.
How many people have tested positive for it? How many people are on the low fat vegan(ish) diet? So far I have not found one person that has gotten rid of this completely. It seems to be exactly what Dr. F says it is - incurable.
[ 06-15-2013, 10:16 PM: Message edited by: nefferdun ]
Posted by surprise (Member # 34987) on :
Neff- I know I've said this before- but not everybody's agreeing here-
My LLMD, and another well known LLMD who treats protomyxzoa, do not recommend a low fat diet.
I treated biofilms, which is what my low positive PR test said- 'detected a small presence of biofilms'
My test from Fry labs did not say I had a new, named, incurable disease- my LLMD actually spoke to Fry about my test.
I don't know. I do believe (and 2 LLMD's thought) that I don't have babesia. I do, however, have parasites-
which I've treated and treated, and am currently doing again. Just my experience.
Posted by rera2528 (Member # 29886) on :
I have been treating it for 3 months - diet, alinia pulses (with other things such as artemisinin and cumanda), and I have felt progressively worse, not better. I am advocating to stop this treatment.
I never had the test. I treated as an experiment. Honestly, I felt I lost a lot of ground with my treatment, and Alinia makes me very sick.
I think I have babesia and bartonella, and I am hoping to return to fighting them. My "feeling sick" has felt like I did when I aggressively fought babs.
Posted by nefferdun (Member # 20157) on :
I didn't start this thread to spark a debate about whether protomyszoa is real or if you really have it or if the treatment or the diet Dr. F prescribes is necessary. I know there are LLMD that do not agree with Dr. F. There is a world of mainstream doctors that do not agree chronic Lyme disease is real too.
I am trying to get support for myself and those that know they have it.
I know from my experience the treatment works and it is the only way I can stay in remission. I know when I stray from the diet, I get sick again and I do it very quickly.
I hate the diet and don't stick to it as well as I should, but it is good for me. I think clearer, have more energy, and no pain if I am following the plan. When I relapse it is directly related to what went into my mouth.
The purpose of this thread is to share what other people are doing, other than diet, to combat this pathogen. I want to know what is most effective. I hope there may be some way to wipe PR out but we will never find out what works if it's very existence is shoved into denial.
If any of you are still battling daily to feel well, look back at all my posts over the years of my treatment. I tested CDC positive for borellia and ehrlichia and babesia duncani. I also treated bartonella. I took an arsenal of drugs and mountains of herbs. I stayed sick and was ready to give up. Then I tested positive for PR.
I am off medication as long as I follow this strict and nearly unbearable diet. It all happened within two months. My whole life changed.
I hate the *&$% diet and want there to be a cure so I can eat cookies! I want butter on my green beans and salad dressing on my lettuce. The least I could hope to expect to get from this discussion is a few good recipes to keep me going. The last thing I need is for anyone to tell me to dismiss what I know is real and pig out to my heart's content.
Posted by surprise (Member # 34987) on :
Not at all what I was saying, not at all. Sorry you took it that way.
My diet is no fun, either. Gluten free, and I have to stick to yeast free- I don't eat cupcakes all day, but god forbid I have a peanut butter and honey sandwich on GF bread 2 days in a row.
I went off treatments, still taking high count probiotics, tried to eat 'normal' and starting having stomach attacks- so back on Diflucan, strict yeast free foods,
parasite treatment again, Lauriciden, etc. (I had remained 100% gluten free.)
Again, just my thoughts- we are all different in gut health, infection compromises on our particular immune systems.
Personally, I had decades of not eating well- underweight, malnourished. Eating healthy proteins and fats, and working out with weights,
has been tremendously beneficial for ME. And I have a test and was told I had protomyxzoa.
Will I always have to be yeast and gluten free, and exercise? Yep, probably, if I want to feel well.
I won't post on your PR threads anymore Neff.
But, on the other hand, there are LLMD's that do not believe this infection is a life sentence necessarily, and are treating it differently,
and maybe some new folks need to hear that, as well as it is being treated low fat diet.
Posted by nefferdun (Member # 20157) on :
If someone posts who tested positive for PR and their doctor got them into remission so they are now free to eat fat - of course I want to know how they accomplished it! By remission, I mean symptom free, off of all drugs, essentially "well".
I hear people say they are better but they are still doing drugs. I believe I could take ivermectin every day (if I could tolerate it) and I could eat more fat too, but I would also have some symptoms.
I know the anti-malarial drugs don't do a thing for me when I eat the required fat for absorption. I took a LOT of drugs over the course of 5 years treating lyme. I had good periods and bad periods but I never felt there was a light at the end of the tunnel until last year when I began the treatment for PR.
My treatment is ivermectin when symptoms begin to emerge which is always after I loosen up on the diet. I have gone 6 months without it.
I take LDN and methyl cycle supplements. I try to follow a low fat vegetarian diet. I try to avoid foods with sulfur - soy is one of them so this limits my diet even more. I eat some egg whites and camel's milk. I eat gluten. When I do this I stay in remission.
I have to be careful of exposure to toxins too. That sets off a flare.
Posted by MichaelTampa (Member # 24868) on :
I tested positive for PR, and really was limited my fat to the 15 grams per day per pendulum testing. After I treated with Borax, I felt much better, including better energy, and was able to eat 25 grams per day. It seemed to me that it may have knocked out the PR, but who knows for sure.
At some point serious fatigue set in, it took me a while to notice it. Routine energy testing of various supplements in the past led me to start taking HomeoK BAB as a priority. This is a homeopathic to train the body to fight against babesia. Along with it I needed cryptolepis and vitamin D. From this I have been slowly regaining back my energy, and with it, I am up to 60 grams of fat a day, again, all the while with more energy.
Perhaps I got reinfected with babesia along the way, or perhaps the Borax impacted the parasites/infections balance that allowed babesia to grow unchecked. Or perhaps I am still treating PR with these babesia-type treatments, as they are similar infections. Lots of potential theories out there.
But, regardless of theories, these treatments have allowed me to increase fat intake while increasing energy. The fatigue is still there some and I still test to take these.
Along the way I added Canada Dry diet tonic water (with quinine), as I had heard this worked well for 6goofy once borrelia was gone for her. I just scored some cinchona bark and am moving to that as an improvement over the saccharin-laced tonic water. Cinchona bark is the original source of quinine.
One thing I noticed also, is that taking diosmin and hesperidine has helped get at this current infection (babesia, PR, whatever it is). I started with VaricoVein, a country life product that has these two along with grapeseed extract, and have added in Extraordinary Beauty Lovely Legs, another similar product but without the grapeseed extract.
I have had circulation issues, clearly, for years, as the spots on my lower legs indicate, and coldness of hands/feet/ears, and other issues, despite treating hormones. So it makes sense this would help get at a blood parasite better.
I really think the diosmin and hesperidin combination is something that should get much more discussion and use, I think it would be very helpful for many here.
Again, not clear if I am still treating PR with these babesia treatments, or not. And of course time will tell if all this fat catches up to me. I've been eating this high fat for just 2 weeks now. So far, only an increase in energy -- I doubt from the fat, but from treating the infection and perhaps from improving circulation as well as I am now doing both.
As far as recipes, I have so little time for cooking these days, but my favorite lunch, almost every day, I eat red lentils, cooked with onions, celery, garlic, ginger, fresh cilantro, and ground fennel seeds, ceyenne powder. I cook a big pot once a week and reheat it.
Breakfast I have been keeping simple oatmeal, and dinner eating many veggie burgers, even when I was just eating 15 grams of fat/day. Many low-fat options out there, but, without soy, Hilary's brand is the one that stands out, 6-7 grams of fat/burger makes it a possibility, no soy in them I am pretty sure.
My diet is expanding now with the extra fat, I know how limiting the 15 grams can be. When you find yourself wanting nuts, keep in mind, soaking raw nuts does decrease the fat content, by perhaps something like 40%. Of course it won't be the same, but good to be aware of the possibility.
Posted by rera2528 (Member # 29886) on :
I have found that the cookbook that accompanies Forks Over Knives has helped me tremendously with the diet. I like several recipes from fatfreevegan.com. The cookbook and blog from Happy Herbivore have given me inspiration. I also like recipes from 86lemons.com and http://www.gluten-free-vegan-girl.com/.
As a suggestion related to the thread - when I read the title, that it was for those treating it, I was moved to post. What I did not understand is that you were looking specifically for support, not feedback.
It may be helpful to change the title to include the word "support" - it may lead to posts that are more in line with what you are looking for. There are some of us who are treating it without success, and I would not have posted about that in a thread titled "support." My apologies about that.
Posted by Catgirl (Member # 31149) on :
I soak my raw nuts in a GSE/water solution. Somehow, I am able to handle a small amount of them. I know my fat limit before my joints start hurting. I can eat one meal with more fat like avocado in it a day (not including the nuts).
I also take GSE, and dmsa (not combined). I wonder if they are busting up the biofilm so I can eat this way. It's not perfect, but it's my balancing act.
Michael, great info, thank you! How much borax did you take?
Posted by nefferdun (Member # 20157) on :
That was great information Mike. Thanks. I bought borax after one of your posts but I don't know how much to take. I will try some of the things you mentioned. I hope you can keep eating the higher levels of fat which would mean you really have knocked it out or at least down. Please keep us posted how things are going so we know if it is working or not.
I didn't know soaking nuts would remove some of the fat. That would be great because when they are added to "burger" or loaves, they give it a really nice texture and taste.
I also got grapefruit seed extract, which I need to take more regularly.
EDTA breaks down biofilm too. I was taking LipoPhos EDTA and it was helpful but it got to the point that I would gag from the taste, it was so horrible, and I can't find anything to hide it in.
I have more fat free/ vegan cook books than all of the cook books I have bought in my whole life, including Forks over Knives, McDougals (which I don't like) and many others. If someone has a favorite mainstay in a book, please let me know. I just made shepherds pie from Forks over knives, and the vegan brownies. It is ok.
I got the book with the protocol for Salt/C hoping it might work to keep things under control so maybe I could eat more fat. I also ordered all the drugs for Dr. K's parasite protocol which I am afraid to do full force. I don't believe I have other parasites. I think PR is the big problem.
When I begin to relapse I start having trouble falling asleep and waking up to urinate frequently. My voice will go hoarse just now and then or I may cough a little bit. It is hardly noticeable.
Then I get a tingling nerve pain in one ankle. Recently I wake up with stiff hands, then wrists and elbows. I feel fine right now - absolutely fine, but I am on guard.
If I don't catch it right away and take stromectol, then I begin to feel depressed and anxious. I don't want to do things I used to love. Things don't matter. Finally, walking up a flight of stairs makes me feel tired.
When I keep on top of it, I can skip through the day. I feel happy. I just get very bored with what I am eating.
Posted by MichaelTampa (Member # 24868) on :
Posting a link of previous discussion on Borax, as several seem to be interested, wanting to provide the info and hopefully not derail this overall thread.
I forgot to mention in my previous thread, nattokinase is an excellent adjunct to the diosmin/hesperidin. Although I take at separate time (nattokinase bedtime; diosmin/hesperidin before breakfast and late afternoon), they work on the same thing of improving circulation in veins and smaller places (like capillaries).
I find EDTA suppositories like Detoxamin to be a good part of biofilm breaking (along with Regulat and serrapeptase), and this ultimately helps one get at all parasites, including PR. Keep in mind that it is possible that other parasites are protecting the PR, and a full Dr. K. protocol could ultimately help one get at the PR.
Posted by seibertneurolyme (Member # 6416) on :
Nefferdun,
Reading your post about nerve pain and waking up with stiff hands makes me wonder if you could be B12 deficient. Or possibly deficient in B6 which also helps with sleep.
At the Buhner conference I met a physician from Minnesota who says half of her practice went away when the patients started the Knives Over Forks diet. I am actually wondering if FL1953 might be more prevalent in certain areas of the country than in others.
You might want to read the thread I will be posting tomorrow about new herbs for babs treatment.
What finally got Steve off meds for 2 months was a combo of doxy, lariam, malarone, artemisisin plus flagyl and ivermectin. It was the addition of the last two meds to his protocol that made the difference. This was before the 2 new tick bites. He was not cured from his blood borne parasites as symptoms of headaches and sweats were starting to come back.
But in your situation I would be looking at combining either multiple meds or herbs. You could try something simple like adding cloves or black walnut hull tincture or turmeric for example which are all cheap.
One other suggestion -- Buhner advised that anyone taking herbs take them in pomegranate juice. It has a synergistic effect and makes the herbs more effective.
Bea Seibert
Posted by ticksickfamily (Member # 22786) on :
Bea, I take sublinguel B12 everyday so I should be ok. I am also a vegetarian, not vegan, although I don't know if dairy and egg white have B12. Also my nerve pain was the worst before I went on the diet and was still eating poultry and fish -over a year ago. It is not nearly as bad when I get it now - just tingling. It was stabbing before.
Ivermectrin has done the most for me too. I was not having symptoms but they just started coming back. It might be a number of things - eating too much fat, or too many sweets (even though they are natural) or the fact that I was spraying weeds again, like an idiot. I made myself sick last year spraying too.
I love pomegranate juice - buy it at Costco. I have not been taking herbs and that would probably help. I have artemix which is a very potent blend of aretmisinin. I think I have a mental block. I have been swallowing pills by the handful for so long.
Michael I have the borax but I am a little scared to try what you took. I am also scared to do Dr. K's protocol. I am back and forth on it.
I take jiaogulan which is an anticoagulant, good for energy - an adaptogen. I also take boluoke and wobenzyme. I only take these once a day in early morning because that is the only time I do not have something in my stomach.
I can still get coartem for more rounds of it but the best drug seems to be ivermectin.
Someone told me about Artemisinin Essentials which has liposomal artemisinin and EDTA. I can't find it anywhere. I was using LipoPhos EDTA with artemix instead. I just can't tolerate it any more - makes me gag.
Posted by MichaelTampa (Member # 24868) on :
quote:Originally posted by nefferdun: Michael I have the borax but I am a little scared to try what you took. I am also scared to do Dr. K's protocol. I am back and forth on it.
If you do try Borax, please go much slower and lower dose than what I did. Bear in mind that Borax is kind of in the "salt" category that treats parasites (as is salt/C and some of the Rx parasite treatments), and I had done many rounds of the Dr. K. parasite protocol prior to Borax. So, I may have had a lesser load, and still I feel lucky having pulled through what was a scary situation for a while. It can be a real help, but seems a bit risky due to its strength; much safer for those with access to energy testing on the dosage.
Posted by surprise (Member # 34987) on :
Well, this thread has really got me thinking. I realize I may come off defensive on the low fat issue, and truthfully, the thought of
having to count fat grams on top of GF and yeast free (as possible) makes me want to jump off a cliff.
But you know, I don't have any fat- I weighed 96 pounds this morning, and I work out with weights 6 days a week. I don't do cardio beyond walking and weight lifting reps/compound.
I eat skinless chicken a lot (just looked- 6 grams of fat only) dense GF protein bars (low fat) all veggies, brown rice,
yeah, some cheese, some almond/sesame butters...I eat avacodos, coconut oil. Water is my drink. So maybe I really am low fat, with my body type and such.
I treated protomyxzoa with lots of Ivermectin rounds, Alinia, Malarone, Artemisinin, Beyond Balance babs2, can't remember what else...
Took Boulke at 4 a.m. every morning for months on end, tried Klaire Interphase (with EDTA) lasted only 45 days on that- I felt it pulling minerals
out of my bones and teeth (intuitively) that I couldn't afford to lose- I don't have a heavy metal issue- Just skinny and underweight - but building muscles.
So, really, I have no idea if I still have protomyxzoa - I do know I need to keep doing parasite protocols, despite having done many...
Just musing... maybe I am low fat after all.
Posted by hadlyme (Member # 6364) on :
Most of you know where I stand on treatment and life with this bugger.
I have seen Dr. F for close to 7yrs now. I basically have been on Zith, Malarone and Diflucan for many years. I rotate them with three weeks on zith and malarone, and one week of diflucan. I have my blood work done very couple months to watch everything.
I do eat a lower fat diet, but not LOW like I did at first. I have found no difference in when I did a 15-20 grams a day to my 25-45 a day now. I do not count them anymore. I just eat common sense lower fat things. Whole foods, but I do eat grass fed beef once in a while and do chicken. I will not go without my meat. Dr. F knows this and it's fine with him. This isn't about a ONE size fits all with everyone.
We all have to find what works. For me this combo along with B12 injections, keep me alive and 'healthy'.
I have days when my joints are stiff. I have days that they are not stiff. I have days that my fatigue is great, I have days that I can be on the go for 15 hrs! I will live with this.
I do NOT take all those other things that you all have stated. I took an enzyme thing for a few months to break down the biofilm and saw no difference in how I felt. Maybe I didn't give it long enough, but good grief, I think we can over do it with what we take sometimes.
I get my rest, need sleep even though sometimes it's tough to stay asleep. Need exercise in walking. I need to sweat and heat my body up. During the winter months in MT now, Dr.F stated to sweat.... sweat was more likely the culprit than low Vit D. that we feel in the winter.
He has never wanted me to take Ivermectin. Never has said anything about taking artemisinin or anything else.
I do know that they are finding more than just our protozoan in new findings. There will be many more buggers with names soon. How do we treat them? That's the million dollar question. Time.
I have faith that even though I'm a lab rat of sorts, that soon, there will be a winning combo that might be a break through for all of this. Might not be either. So what do we do in the mean time?
We find what works for each of our bodies. What I do will maybe not work for you. Same thing with lyme... it's not a one size fits all treatment plan.
I am one that supports this little protomyxzoa. I promote that most of us that thought we had babs, probably have this. I support the thought that if this and other coinfections are left untreated, that they can be one of the triggers for ALS, MS, Parkinsons, Fibro, Lupus and the rest of the autoimmune diseases.
There is so much work going on with the F labs in so many areas, that if we wait patiently, one day the information will be released and we can all benefit from it.
I'll be back to see Dr. F in the next month or so, but I'm sure we'll stay with what we're doing, as it's keeping me on a level of 'normal' for now. I work fulltime and can be as normal as my body will let me. Somedays, yes, I do not feel or look normal. But... I do feel that attitude is half the battle. I will win this battle and I will not let this rule my life. I rule it.
Enough rambling. Posted by ms dixie (Member # 40818) on :
Neff, have you tried alnendazole? I did ivermectin pulsed for 15 mos and took a break. Then I started a substitute for albenzadole and did not expect much of a reaction. Boy was I shocked! I am having quite a herx and expect I need it .
Another possibility if you are concerned about taking these meds long term is to use a cream version ( discuss with doctor ) .
I am going back on ivermectin and may do that - pulse it every other day and use a cream. I think these parasites never completely go away , so we have to find the safest way to keep functioning.
PM me if you want more info about the cream version of these.
Posted by Catgirl (Member # 31149) on :
quote:Originally posted by MichaelTampa: I find EDTA suppositories like Detoxamin to be a good part of biofilm breaking (along with Regulat and serrapeptase), and this ultimately helps one get at all parasites, including PR. Keep in mind that it is possible that other parasites are protecting the PR, and a full Dr. K. protocol could ultimately help one get at the PR.
I agree, I think the Dr. K protocol has helped me. I've done several rounds of it. I also use detoxamin, GSE (big help), and serrapeptase. Albenza really helped too (herxed hard so know it was killing things). I feel like hitting parasites and detoxing heavy metals helped me to get a leg up on my immune system. Getting rid of my amalgams helped too. Also, ondamed. It helps chip away at parasites (the bugs can't hide), reduce inflammation, and detox.
Michael, thank you for posting the borax link. Also are you on malarone or mepron? I want to try borax but am a little hesitant (still on malarone).
Posted by nefferdun (Member # 20157) on :
I ordered everything on this and will take it with caution. I do not believe I could tolerate it at the dosage he is suggesting. After that, I will try the Salt/C to see if that does anything. I am pretty worried about the borax but if it actually cured someone, I would try it.
I have been in a tenuous remission - tenuous because it was totally dependent on diet. I have gone months, not just days, close to symptom free. It is really hard for me to keep on fighting this because it seems like I should be well. I feel really good and then it hits me again. Very frustrating.
I told one of my friends about my morning stiffness and she said, "you mean you are just now beginning to have that? I have had it for years and have to prepare to get out of bed". I don't take this stiffness as normal even though at my age, any doctor would dismiss it as such. The reason I don't take it as normal is because I didn't have it last week.
If I could go to bed and fall asleep and stay asleep throughout the night, I would consider myself cured of PR. That is one of the tell tell signs for me that it is still there. I take several thousand mg of jujube seed extract and that sends me off.
Depending on how many times I wake up, tells me where I am in terms of remission. If I wake up and stay awake, I don't want to live like that. I get so tired I can hardly function and the quality of my life is miserable. So I would rather restrict my diet to 15 grams of fat forever than live with just that one thing - insomnia.
Before treatment I had stabbing nerve pain in one knee and an ankle. I felt like I could scream sometimes it was so bad. Now it just tingles every now and then letting me know I better watch out.
When it is coming on again, my voice becomes hoarse and I am more anxious. This is kind of funny because I want to express my anxiety but can't talk.
I was doing really well until a couple of weeks ago. This time it is taking more stromectol to eliminate all the symptoms. If I take stromectol everyday I get pretty bad headaches and my eyes get blood shot so I have to juggle what I can tolerate.
I fought and got rid of borellia, bartonella, babesia duncani - but this one cannot be cured. Doesn't seem fair.
Posted by Catgirl (Member # 31149) on :
I did that whole protocol except that I did 12 mg. per day of ivermectin (not the dose listed). I really feel this would help you.
I also didn't do mimosa pudica (constipates me).
[ 06-18-2013, 03:02 PM: Message edited by: Catgirl ]
Posted by nefferdun (Member # 20157) on :
Thanks Catgirl. I have done 12 mg ivermectin for about two months but not any of the other anti-parastic drugs. I should get them soon. I wonder how they will hit me.
Posted by MichaelTampa (Member # 24868) on :
quote:Originally posted by Catgirl:
quote:Originally posted by MichaelTampa: I find EDTA suppositories like Detoxamin to be a good part of biofilm breaking (along with Regulat and serrapeptase), and this ultimately helps one get at all parasites, including PR. Keep in mind that it is possible that other parasites are protecting the PR, and a full Dr. K. protocol could ultimately help one get at the PR.
I agree, I think the Dr. K protocol has helped me. I've done several rounds of it. I also use detoxamin, GSE (big help), and serrapeptase. Albenza really helped too (herxed hard so know it was killing things). I feel like hitting parasites and detoxing heavy metals helped me to get a leg up on my immune system. Getting rid of my amalgams helped too. Also, ondamed. It helps chip away at parasites (the bugs can't hide), reduce inflammation, and detox.
Michael, thank you for posting the borax link. Also are you on malarone or mepron? I want to try borax but am a little hesitant (still on malarone).
Never taken mepron. I've been on malarone at various times here and there, but not these days.
Posted by MichaelTampa (Member # 24868) on :
That is essentially it. I've seen it with biltricide 4 times/day (every 6 hours) and also 3 times/day. Twice a day doesn't seem like enough, but that's quibbling with details. With all these things, it's not like we kill everything with with one round of this. So, more important to do with dosage that is viable, and then just keep at it as needed.
Posted by nefferdun (Member # 20157) on :
Thanks Mike. I got a new brand (to me) of quinine water that only has 9 grams of sugar instead of 23-30. I haven't opened it yet because it is so pricey I am waiting for the right "occasion" to see if I like it.
Things are settling down since I got serious again about the fat and took stromectol. I received more stromectol but none of the other drugs, like Albenza.
I get so tired of treating that it is hard to stay on top of things much less try something new. I am also taking care of a diabetic cat and 4 horses with Cushings so I am constantly giving meds and sups to everyone. I am so burned out.
Posted by Catgirl (Member # 31149) on :
Hang in there Nefferdun. :)
Posted by mlg (Member # 35383) on :
Hi,
My doctor is now working with Dr. F.
Here are the symptoms according to Dr. F hardcopy hand-out. Symptoms: Cold hands and feet, often clammy, Poor capillary refill, skin color changes including 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, sweats (night/day), chills, flushes, dizziness, insomnia, profound brain fog, poor balance, anxiety, panic, OCD, irritability, agitation, impulsivity, ADD, emotionality, hypercoagulability that has been associated with diseases such as CFS, Fibromyalgia, scleroderma, rheumatoid arthritis, Lupus, Multiple Sclerosis, ALS, Parkinsons, Autism, COPD, and others.
Treat for worms like crazy before treating proto.
I will try to post some of the recommendation in a little more than a week as I will be traveling.
Posted by CD57 (Member # 11749) on :
How can they tease out these symptoms? I don't understand. Those are all Lyme, bartonella, babesia, parasite, and viral symptoms as well.
Posted by mlg (Member # 35383) on :
Dr. Burrascano supports this. Dr K supports this.
I support this through experience and experiment.
Posted by rera2528 (Member # 29886) on :
CD57 - I think that it can be difficult, in some cases, to distinguish. I started to relapse, and I treated PR for three months with no response, except a continued progression of my symptoms.
My LLMD and I both feel that I don't have it, based on the no response. However, I do not feel that was wasted time. People who have PR have had clear responses, and I think that their responses made my trial worth the effort.
I know that I don't have it - that much was clear. My bartonella symptoms are similar to PR. As I have read on here, though, I think that enough people have responded positively that for those who are making no progress, it is a worthy path to pursue.
Posted by Catgirl (Member # 31149) on :
CD57, lyme and co infections overlap for sure, so it's hard for people to even fathom proto on top of them. It was hard for me to distinguish it because of this. The only way to tell is to cut the fat.
My my babs/proto, lyme, bart symptoms all seemed to get worse the more fat I ate. Even viruses, and myco popped back into the picture. I'm sure this is because the biofilms produced by proto allowed lyme and all the co infections to flourish (kind of explains how proto is easily missed). However, lowering the fat reduced my symptoms.
I went back to eating a reduced fat diet a week ago. Each day my lyme, babs/proto and bart symptoms have lessened. Not sure about the myco and viruses. My shoulder pain is almost gone (other painful areas are actually gone now). My raspy voice is gone too. I know if I cut more fat that I would be improving faster, as I've done this before. But I'm trying to find a livable diet, and if this is working in just a week, then I think I've found it. At least that's my hope.
As far as fats go, I've had a tiny bit of cheese, avocado and nuts (soaked) this week. I also went from having 1/2 a bag of chips a day down to 5 or 10. This works for me, as I love chips and don't want to cut them out completely. It's also helping my yeast. I am craving a pizza, so I will make one tomorrow with GF crust, some sauce, veggies and herbs.
I have to be honest, I will probably have at least one GF pizza from UNOs a month though. :) I used to have them every week. So cutting down might still work for me (fingers crossed).
Rera, did you cut the fat during your three months too?
Posted by nefferdun (Member # 20157) on :
I thought I was having a relapse but it turned out I got the bacterial infection that was on imported produce. I just heard about it on the news, and one of my friends had it too. What a relief it was not a relapse.
I am becoming an expert on cheats, believe me! I have found some pretty good recipes for cake and muffins without fat. If anyone is craving chocolate cake I will post one.
I make frozen low fat yogurt with plain organic yogurt and a little maple syrup or coconut palm syrup (glycemic index in only 35). I make a chocolate syrup with one part cocoa and two parts coconut palm syrup and a little water to thin - boil.
I cut up bananas and freeze them on a cookie sheet. Then I blend them and frozen blueberries with a little juice for a sorbet. You can also blend it with yogurt.
I try to stay away from processed food but Skinny Cow makes fudgecycles that only has 1 gram of fat. Graham crackers only have one gram per cracker. Dryers fruit bars have no fat. Fig Newtons have no fat.
I made pizza today. I cut a sour dough loaf in half (no fat and low GI), put on a little store bought pizza sauce and 1/4 cup low fat mozzarella cheese and as much no fat chedder cheese as it takes to make it look like pizza. I like a lot of vegetables like onion, mushroom and green peppers. This only has about 6 grams of fat.
So you don't have to go over the fat allowance to have a great snack that feels like you are cheating.
It is hard to find recipes I really like. One of my favorites is Thai Panaeng Curry because it has a great combinations of spices. That is what makes this diet so hard. You can only eat so much beans and rice before you feel like screaming.
Anyway I am doing really well again - no symptoms. Yeah.
Posted by nefferdun (Member # 20157) on :
What really makes this diet hard is developing a new palette and learning how to cook differently. It is also hard to find good recipes that are mainstays you can have every week.
I was a great baker and now I can't use fat. I got a cook book with no fat recipes for cookies and cakes. It requires such things as prune puree and lecithin. I still haven't found the lecithin - have to remember to check the health food store. The ones I have tried are not bad.
I use egg whites. Sponge cake has no fat and it is great with fresh fruit. You can moisten cakes etc with applesauce and of all things - refried beans or pumpkin!
I am getting used to it. I guess.
Posted by Catgirl (Member # 31149) on :
Right on Neff! So glad it wasn't a relapse!
I hear you (developing a new palette). Do you have a good muffin recipe? I miss muffins. I used to bake a ton and miss everything I used to have.
I tried a store bought gluten free pizza dough today (brown rice). It was more like flat bread. I put veggies and 1 piece of pepperoni chopped up in little pieces. It was good, but I really like the one UNOs makes (the dough). I need to find a good gluten free recipe.
My husband looked at UNOS fat content for me today. The ones I was eating had 36 and 42 grams of fat in them! No wonder proto came back (and this was their skinny little gluten free pizzas)!
Posted by beths (Member # 18864) on :
Cat girl: Muffins:
Ingredients 2 cups Oat Bran Hot Cereal, uncooked (I grind in food processor to make more flour like) 1/2 cup firmly packed brown sugar, honey or maple syrup 2 teaspoons baking powder 1 tsp orange peel Dash vanilla Dash cinnamon 1/2 teaspoon salt 1 cup unsweetened vanilla almond milk 2 egg whites, slightly beaten 2 tablespoons coconut oil, can sub apple sauce Optional : 1 cup raisins 1/4 cup chopped walnuts
Preparation Heat oven to 425° F.
Line 12 medium muffin cups with paper baking cups or spray bottoms only with no-stick cooking spray. Combine dry ingredients; mix well. Add combined milk, egg whites, honey and oil; mix just until dry ingredients are moistened.Add walnuts and raisins, mix until just combined.
*Fill prepared muffin cups ¾ full. Bake 15 to 17 minutes or until golden brown.
Posted by nefferdun (Member # 20157) on :
I'll post some of my favorite recipes that you can make as muffins or bread.
Ginger Bread
1 can pumpkin 1/3 cup molasses 1 cup coconut palm sugar (GI 35) 1/4 c egg whites 3/4 cup milk (any kind) 1 TB apple cider vinegar **********Mix wet ingredients together 3 Cups Flour (I used Spelt) 4 ts baking soda 1/2 ts salt 2 ts cinnamon 2 ts giner 1 TB pumpkin pie spice ******** Add dry ingredietns to wet and mix. Pour into oblong cake pan or muffin cups and bake at 350 degrees - abut 40 minutes for the cake, less for muffins. Check for doneness with toothpick or when you press the center, it springs back.
If you add a little more flour, this will make gingerbread cookies. Refrigerate before rolling.
Posted by nefferdun (Member # 20157) on :
I make these a lot too.
Carrot Muffins (or bread) 2 Cups whole wheat pastry flour or spelt or? 2 ts baking powder 1 ts soda 3/4 ts cinnamon 3/4 ts nutmeg **********mix dry ingredients together 1/3 cup maple syrup or coconut palm syrup (GI 35) 1/3 cup milk (any kind) 1/3 cup egg whites ********** 2 cups grated carrots raisons (as many as you want)
Add carrots to wet and then dry ingredients to wet. Bake 350 degrees about 45-60 minutes if bread; less if muffins
You know how to test for doneness.
Posted by nefferdun (Member # 20157) on :
Sponge Cake- or muffins
1 cup egg whites beaten until stiff but not dry fold in 1/3 cup maple syrup or coconut palm syrup 1 ts vanilla 1/2 salt fold in 1 cup flour (any kind)
Bake 350 degrees until lightly brown and does not leave a dent when pressed in center. About 30-40 minutes
This is great with berries. I love it.
All of these recipes I make a lot.
Posted by nefferdun (Member # 20157) on :
My newest discovery is
Prune Puree
1/2 cup pitted prunes 1 cup water or fruit juice 2 ts granular lecithin (got it at the health food store)
Blend in food processor or blender until smooth. Keep refrigerated up to 3 weeks. Substitute all the fat with the puree, substitute 1 egg white for each egg, and cut the sugar by 1/3 to 1/2.
Prune Butter
1 1/3 cup pitted prunes 6 TB water Blend in processor
It does not call for the lecithin but I would add it anyway because it makes the baked goods softer and rise better. Lecithin has 6 grams of fat per TB but it also has a lot of nutrients.
Posted by Catgirl (Member # 31149) on :
Mmmm, Beths and Nefferdun, your recipes sound great! I will have to cut the sugar and fruit, but just a little might be okay for me. Posted by Catgirl (Member # 31149) on :
Bump.
Posted by nefferdun (Member # 20157) on :
No wonder I relapsed. I was eating a lot of sweets. When I went into remission I was sticking more to the vegan diet, eating mainly vegetables, legumes and rice. It does get tedious though.
Posted by nefferdun (Member # 20157) on :
I am posting what I wrote on another thread. I think this is my mistake.
Things are getting worse - I as up 4 times last night and also had headache, sweating, hot flashing and brief cramps. Horse voice today and very tired.
I believe this relapse may have been caused from too much glucose feeding the parasite. I just go into denial as the diet is so restrictive.
I have 16 apple trees full of apples. I made apple sauce, apple butter and stewed apples. I ate a huge bowl of stewed apples telling myself it was good for me but it was sweetened with maple syrup.
Sometimes I make a none fat desert and eat the entire thing ignoring the honey and maple syrup, as well as the flour which is all very high on the GI. I am thinking it is not gluten or lactose allergies that are affecting some people, like me. It is the sugar in it.
I have been having skim milk for breakfast with none fat cereal, telling myself it was fat free and therefor ok. I ate graham crackers and fig nutens by the box. My latest discovery was rosemary crackers with only one gram of fat per very large cracker - but white flour. I should be smarter than that!
So this is probably why I am where I am right now. Boy, it is so frustrating to be hungry all the time and feel so unsatisfied with what I am eating!
It is also very frustrating to have 7 hives of honey bees and not be able to eat their treasure. Just ***** me off!
Zylitol is a sweetener that has been proven to destroy the bacteria causing plaque on your teeth. I am going on a strict diet for two weeks to see if I can get back to where I was. I will have my morning cup of tea with a ts. of zylitol. That is it. GAWD!
Posted by Lymetoo (Member # 743) on :
I would think you'd have a raging case of candida by now with all of that.
Be cautious with the Xylitol too.
Hope you can get back on track. I get angry too about not being able to eat fruits or honey! GRR!
Posted by nefferdun (Member # 20157) on :
I am not on any ABX so I don't get candida. I didn't eat anything high on the GI when I was treating the other infections. But I was not on this low fat diet either.
For a long time I wasn't taking anything - just the diet - and doing pretty well. I took stromectol now and then when I felt symptoms come back.
It isn't like I was eating candy and drinking pop. If I was half way normal it would be a very healthy diet.
Frankly sometimes it just drives me nuts - can't have those! It is easy not having meat, fish or poultry - but eggs, milk, cheese, nuts, seeds, avocado, and any kind of salad dressing!
Then because of the CBS mutation no cabbage, kale, spinach, peas, broccoli, soy, soy sauce, bread, mustard, tea, coffee, lentils. . . the list goes on.
Obviously I can't follow it perfectly.
I get very befuddled trying to decide what is the lessor of evils. If I have oatmeal for breakfast with a bit of coconut milk, that is 5 grams of fat.
If I have whole grain cereal that is unsweetened, with skim milk - that is zero fat. I can even put a banana on it. I love this. It feels so normal and fills me up. But the milk, the lactose, has glucose.
If I make french toast with Ezekiel break and egg whites, that has only 2 grams of fat. I would put peach or apple butter on it made without sugar - But the eggs have sulfur and arginine.
So I would tell myself, to hell with it. I am eating this!
Posted by Lymetoo (Member # 743) on :
I could never do it.
I haven't taken abx in years and I still battle the yeast.
Posted by nefferdun (Member # 20157) on :
When I follow the diet I feel good. When I don't, I feel bad, not just physically but emotionally and mentally too.
When I slide, I feel like I have dementia. It is so frustrating and alarming to forget what you were doing half way through doing it. I get so anxious I am afraid to ride my horse. I get irritable because I am not sleeping. I feel depressed.
I get hot flashes and sweating, muscle twitching, stabbing pains (that were so bad at times I literally screamed), headaches, pain in my joints, loss of voice, cramps, coughing. . . . seriously, headed towards death's door.
When I am doing really well, I feel energetic. I congratulate myself for remembering things, I have no pain at all (none) and I am busy, planning my life, riding my horse, painting, cleaning everything in site, playing with the dogs, planting flowers. . . .
So the point is I don't have an choice!
Posted by Lymetoo (Member # 743) on :
Same here. I feel the same way (sorta) when I don't adhere to my diet .. pain included.
Posted by nefferdun (Member # 20157) on :
I decided I get too hungry to forgo bread completely. I lasted less than 24 hours. My metabolism has shot up so much. I used to weigh 145 pounds and I ate about 1400 calories a day to maintain that weight.
Now I weight about 132 pounds and I never stop eating. I eat more than 2000 calories a day. It really doesn't matter how much I eat, I don't gain weight.
Grains have more calories and help fill me up. I am doing much better with the honey and maple syrup - none. I feel better already.
I think I will be able to have some honey but just a very small amount. I was overdoing it. I made some apple butter with a little coconut palm sugar.
I am going to start sprouting spelt again too.
Posted by Catgirl (Member # 31149) on :
I think the bread will help.
It absolutely amazes me how much sugar you can tolerate. You are so fortunate that you can eat as much fruit as you do. I can only eat one strawberry per day. That's it. Anything more gives me yeast. Even a tiny amount of syrup or any kind of sugar, even xyletol gives me yeast. I can't even take homeopathic pellets (sucrose). Just imagine if you ate my diet.
Neff, I would be so happy if I could eat your diet. I can see that you feel deprived, but it's hard for me to feel sorry for you. IMO, you are so incredibly fortunate that you are able to eat all the stuff you do. I envy you.
Posted by Keebler (Member # 12673) on :
- RIFE FREQUENCIES for Protomyxzoa Rheumatica ?
Does anyone have any numbers for me? Anyone used rife for PR?
I found this one reference from an Advanced Google Search
(I've not yet gone to the Rife discussion thread here at LymeNet with this question, though). Thought I'd start here.
Near the bottom of the page, in the comments section, Barbara posted on May 23, 2013:
she uses "a Doug Coil Rife machine and found that this will kill the Proto as I can get a good herx from treatment. . . frequency 515 and 1583. Also, by using this machine and not antibiotics, I am not encysting the Lyme while I kill the Proto. -
Posted by nefferdun (Member # 20157) on :
That is good to know Keebler. I thought about getting one but the PE1 didn't do anything and I was afraid it would be another waste of money.
Catgirl - that cheers me up actually, even though you "don't feel sorry for me". You are right, your diet sucks - except you eat avocado and chips and pizza and nuts!
Posted by Catgirl (Member # 31149) on :
Ha ha! I have to cut back the avocado now. I eat 5 chips and 3 nuts (wow--lol!).
Posted by nefferdun (Member # 20157) on :
I get crackers from costco that have 1 gram of fat per 4" by 8" cracker. I break one up and pretend they are chips.
I also make a pizza out of one of them with non fat cheese - sometimes a Mexican pizza with refried beans and non fat cheese, melted in the microwave for half a minute. When done I top with salsa. The only problem is it is white flour so I only have one or two of them. The good news is each one is 1 gram of fat!
I usually do a lot more cooking and preparing than I used to. I also use a lot of spice. Sometimes though it is nice to just be lazy and eat something not so good for you like the crackers and fat fee cheese. For lunch today I had a vegan hot dog of all things. I loved it and it only had 2 grams of fat.
The reason I am not into cooking so much right now is because I have been making gallons of cider, apple sauce and apple butter. I use no sugar or a little coconut palm sugar so it is very healthy. I have been drying apple slices too and eating them like candy. I feel better so they can't be bad for me.
Posted by Catgirl (Member # 31149) on :
quote:Originally posted by nefferdun: ...Then because of the CBS mutation no cabbage, kale, spinach, peas, broccoli, soy, soy sauce, bread, mustard, tea, coffee, lentils. . . the list goes on.
Neff, what happens when you have this stuff? I have a CBS mutation and I still eat cabbage, kale, spinach, broccoli, bread, mustard lentils. I haven't really noticed a difference, but then I've been so busy trying to avoid fat and sugar. Also, I take DMSA and other sulfur type supplements (no problems).
Do you really notice a difference not having sulfur?
Posted by nefferdun (Member # 20157) on :
I have urine test strips and have only gotten my results below 1600 for a short period of time. I was feeling pretty well during that time.
I think I sleep better when I avoid food with sulfur. Dr. Roberts says it causes you to feel stressed. I have had insomnia since I was 12 years old.
I eat some egg white and soy. That is my downfall.
When I took DMSA, it was horrible. I will never touch that stuff again. I am fine with EDTA. People with CBS do not detox heavy metals very well.
I just got my test results back from F labs and it said I had stippling on my red blood cells. I looked that up and it could be lead - or babesia. I don't know which it is but I should probably get some chelation.
I have also had migraines all of my life. WHen I drank, I loved red wine but could not tolerate it because it gave me horrible migraines. In fact, most alcohol gave me migraines so I quit drinking when I was very young.
Alcohol also caused really bad insomnia. Other people would drink to unwind but if I had a drink it sent me into overdrive. I believe it was the sulfur.
I have never been able to drink more than one cup of tea or coffee. Coffee is the worst for me. I don't drink it.
Posted by Catgirl (Member # 31149) on :
Wow, I guess I should get some strips. Thanks Neff. I can handle DMSA. But I can't take too much NAC (makes me feel worse).
Have you tried detox 2 yet (Byron White)? It's good for detoxing metals. I think it would at least get the metals in your digestive tract (from parasite meds, die off).
I've had headaches all my life, but much less since treating lyme and company. Now I just get the headache behind eyes.
Posted by TNT (Member # 42349) on :
Hi, for those with proto...
I did a short Rife treatment last week using bartonella and lyme settings.
Since then my lower teeth are tingling again; eyes are hurting worse, more joint pain. Having more trouble with breathing and shortness of breath. I used to yawn very very much, but now this.
My bowels were getting looser even before that, but seem to be worse since. Also, my subcut. nodules are worse and I am dizzier.
My question to those on this thread is this. Does PR cause less formed bm's and do any of you have this symptom of nodules with PR?
I have already read as much as possible about this bug and it's difference to bart., but still can't seem to determine what is taking precedent.
I hope you all are not tired of hearing me ask some of these same questions regarding some of my symptoms. We just can't get to the bottom of this.
I bought some ivermectin paste and am just about ready to use it topically! But if Bart. flares I might be in worse shape for it.
So the basic question is does PR cause loose bowel issues, and are these nodules ever an issue for you with PR?
thanks, TNT
Posted by nefferdun (Member # 20157) on :
It can irritate the bowels and and the bladder, so the answer is yes. I can't remember about nodules. Have you read this link?
I know how frustrating it can be getting information about this bug. It just isn't out there. I am going to see m NP this morning. She had a conference call with Dr. F about my blood test results. Maybe he told her something interesting. I sure hope so!
I will report back this afternoon if I learn anything.
I don't think using ivermectin topically is going to kill anything unless you have lice. It is a relatively safe drug so I would not be so concerned about giving it a try internally where it can do some good.
Posted by Catgirl (Member # 31149) on :
TNT, it's hard to say without knowing more about you (diet, etc). Have you changed your diet? Are you feeding proto with mag or extra minerals? There is a fine line here that we all have to find.
Eating things with fat and arginine can cause teeth tingling, jaw pain, eye pain, joint pain, and babs, lyme and bart symptoms. Parasites can cause loose bms. It sounds like you aggravated them. Killing parasites also brings on the yeast. Yeast makes everything worse, including proto.
I am not sure about the nodules. I get those with bart, but then my bart usually flares before the full moon, so it could be proto (the jury is still out).
Also, none of us are tired of you. You are more than welcome here. We all learn from each other. Posted by TNT (Member # 42349) on :
Thank you so much Catgirl, it means alot to me that people really care and want to help-and, don't get tired of my asking and searching.
I can't say that I don't eat fat. We cannot afford much and we eat alot of hamburger, some chicken, and a little turkey.
I have made an effort to cut back on fat, but really have no idea what amount I eat. And I cringe when I think about truly counting fat grams. You have to give me a break... I used to eat bowlfuls of ice-cream every night before bed, loved mushroom and swiss angus burgers, steaks, and the like. yumm
I definitely have made alot of dietary changes since my health went really bad, and, since I have malabsorbsion issues, I do use ionic minerals and magnesium.
The yeast doesn't seem to be as much of an issue as it used to be. I just got results back from Metametrix and my d-aribinitol levels are down to 23 whereas they had been near 200. So, that is an improvement and hoping that urine test is a true indicator of levels.
nefferdun... I'll be looking for any new info, thanks! And, thanks for the link, I do have that one from I think Catgirl's earlier post.
Posted by nefferdun (Member # 20157) on :
I saw the NP and she said she had an interesting conversation but nothing to report! Good grief. I don't even know what the UFO's in my blood are so I have to assume it is just PR and not something else.
She is going to try to build up my immune system by balancing my hormones etc. I am also doing IV EDTA on Monday. EDTA degrades the biofilm.
If you don't have much money beans and rice is much cheaper than meat and that is the diet you need to be on if you have PR. You should also not be taking any magnesium.
If there is any doubt you have PR, get tested - or look at your test for borellia - if you are positive for bands 23 and 41, then you probably have it. You have to change your diet if you want to get better. It is hard but it is the only way to get into remission.
Use nutritional data.com to get information on fat content. One Burger King hamburger has 15 grams of fat. That is all the fat you should have for one day. Meat also has iron, which PR uses to build biofilm.
Posted by hadlyme (Member # 6364) on :
Remember TNT, with any of these vector borne diseases, we all have our own unique symptoms and we all are unique in how a drug will help one person and then not the other.
All of this messes up our bodies in ALL areas. Low fat eating really can make you feel better. All you're doing by eating fatty foods is building up that biofilm and then it's harder to kill the little buggers when they hide in the biofilm.
Whole foods, stay on the outside aisles of grocery stores! I do eat some meat, but make sure it's small amounts and grain fed beef or no fat on any chicken. Veggies, fruits,..... it's not hard to fill up.
I recently went to gluten free and for the first time in my life, my intestines are working! I found something that works! But it might not for you...... take everything and test it with your body.
Sorry Neff that there still isn't any answers on what the 'buggers' are... but treat as if it is PR. You are correct in the bands, 41 is what Dr. F looked at with me in my old lyme tests.
He'll be coming out with more info soon, he is finding all sorts of different PR, and we'll be told more soon.
NO MAGNESIUM. TNT, that can do a number on your intestines also. And, magnesium has been found to build up the biofilm, like it's feeding it.
I thought I couldn't live without my supplement mag as I had been on it for over 9 years. I thought it was the 'thing' that was keeping me in remission and feeling ok. I was just making my "crash" worse when I finally got there!
Dr. F has no list of symptoms for the PR. He will say that it does mimic MS, Lupus, ALS, Parkinsons, Fibro, etc.... so if you look up ALL those diseases and symptoms, then you have the 'list'.... some we might not ever have, others we might all share...
Hope this NP has some answers Neff...... let me know how it goes! Hope you don't herx too much from the EDTA? Is she going to go slow with that? IV might be strong? Have you ever had this before?
Posted by TNT (Member # 42349) on :
Great replies you two.
I have been gluten free most of this year. I feel absolutely no difference without wheat. I also have reduced my fat intake, like I said, but probably not enough to starve me yet I love beans and rice, and recently told my wife we could eat more of that, to help.
I am also doing very low sugar diet because of my fungal issues from years as a chocolate, and ice cream junkie. So, not sure how much fruit I really be able to eat. I have just recently began eating some apple and bananas on occasion again. No problem so far.
And since I just got my Metametrix test results back for fungal, it looks like I should be ok in moderation. (d-aribinitol levels had been 198 a year and a half ago, now they are 23!!! I do take piles of probiotics-just not as many as Greta does
I will say that I may have to just try some low dose stromectol to see what response I get. I just don't want to half kill myself like my friend did with it -even at a low dose to start with.
I have had three Fry smears done. The first one revealed very very heavy load of biofilm, heavy PR, and considerable cocci. Second smear revealed strong improvement in PR, and biofilm, but a flare or worsening of cocci (bartonella) Between the first two smears I took two bottles of Alinia with no trouble whatsoever-in fact felt good on it.
Then she wanted me to switch over to Mino., Zithromax, and Flagyl. the flagyl started to mess me up, so I quit, took a natural break for 3 month, but the terrible exhaustion and weakness started to come back horribly. So I took Zithromax and Flagyl again, and this time it did me in and have been wasting away neurologically and in body. Have been going downhill badly for two years and can't get a griphold. I am 36, but look like 50. People don't like to look at me.
A year after the last flagyl episode I had another Fry smear done, and this time it showed no evidence of PR or biofilm in my blood (but no PCR). But still had a few cocci on the RBS.
So I am really confused as what my symptoms prove. I had heavy breathing today with the nodules on my lower legs sore and bothersome. Anxiety, and any stress makes me unfunctional. Bottom of foot hurt tonight, shins has slight pain & irritation, as well as some eye pain, and heartburn here in the evening.
Do any get really cracky joints all over with a PR flare?
I need to go to bed-all my sleep aids in me and I can hardly type-I hope I made sense and corrected all my mistakes. Lunesta, take me to LaLa land...
Thanks again for the great replies and acceptance.
Posted by nefferdun (Member # 20157) on :
It sounds more like bartonella. Bart causes nodules under the skin especially on the outside of your thighs and arms. i never noticed them until I found them and pressed them. Then they hurt. It also causes sore feet and painful burning shins.
I am wondering if I have bart coming out too. The bottoms of my feet hurt (slightly) when I wake up in the morning. I have never had this symptoms before. My anxiety is also increasing and my nerves are so on edge, I sometimes feel explosive with irritation. My anxiety is through the roof but there is a lot of stress in my life right now.
I don't have the skin symptoms typical of bart, which I did have when I treated it in 2009-10. I had pea size brown spots, crusty moles and white spots. I didn't have streaks.
Maybe this is something different than either bart or PR. Great, huh? It is so frustrating to me to pay all of these doctors for a diagnoses and none of them bothers to ask Fry what to test for. All I know is I have stippling on my red blood cells and something "with motility" moving between them. TNT, does that sound like what you have - the cocci?
Posted by TNT (Member # 42349) on :
Yes, it sounds like what I have. But my Bart. symptoms (all the typical ones like shin pain, bottoms of feet pain, strong aggression and anger, heartburn, swollen lymph glands, etc.) were really bad several years ago (before I knew what was wrong). Now my symptoms are more subdued, and I don't get as angry as I used to.
But the nodules are severe now.
I don't know what a Fry smear would show at this point. It's been a year now since the last one.
Posted by nefferdun (Member # 20157) on :
For years people talked about BLO, bartonella like organism, that Dr. F discovered. Then it switched to PR. Are these the same organism or different?
There were two things in my blood. 1. Stippling ON the red blood cells 2. something with motility moving between the cells. Then there is the biofilm.
I get so frustrated. I can't get any answers. I can't believe that NP did not ask him what I needed to be tested for or what he thought I needed to treat.
I honesty think she did not want to know because she is afraid to get involved giving ABX to a lyme patient, so she treats everything else.
Posted by nefferdun (Member # 20157) on :
Just found this but not alert and focused enough right now to completely absorb it. It seems to address my question.
Great link Neff. The link said that the BLO could be myco, and discussion below it indicates they still are not sure as symptoms overlap. I understand your desire to know what is what. I think if you want answers you will probably need to see Dr. F. I also think you're right about your NP being afraid (abx).
There is so much more that has not been discovered yet. Look how slow the docs are to treat parasites. Gael hit the nail on the head along time ago. Treat parasites in general. No need for me to name the parasite or like organism to feel better (just went for it). Look at how iver helps you Neff. It covers more than just proto.
Posted by nefferdun (Member # 20157) on :
Maybe the things showing motility are BLO. It says you can have long asymptomatic periods with flares worsened by stress. I have the headaches described and my feet are slightly sore in the AM. Just my irritation (I am usually very calm) is reason to suspect this.
Then someone says Dr. F says it is not actually bartonella. They were incorrectly using the term hemobartonella, and then it was reclassified asmycoplasma but they think it is a eperythrozoons or epierythrozoans - what in the world is that?
I get so aggravated trying to figure all of this out to treat myself.
From F. Labs " In summary, as new species of blood-borne bacteria have been discovered it is apparent that organisms identified by microscopy that are found inside or adherent to red blood cells are not necessarily Bartonella spp. and as such the general terms 'hemobartonella' and epierythrozoans '' are used to describe the features of the organism that is observed."
I found an old post where spring showers explains hemobartonella is not PR. PR became more significant so BLO took a back seat and is not even tested for as much.
I guess I am on the right tract. I am doing IV EDTA on Monday. It will bind with heavy metals and help break down the biofilm. She told me if I did not have a really bad reaction, I could do it again next week. Hopefully I can just keep hitting the biofilm this way while I continue to take ivermectin.
The biofilm protects everything so if I can get it reduced, then maybe my body will be able to deal with what is left of the BLO. As it is known to remain dormant, keeping my immune system healthy and addressing my WHOLE SELF seems logical.
Posted by hadlyme (Member # 6364) on :
Dr. F himself says this isn't a true protozoan, not a true parasite. It's something completely new as far as what 'type' of organism he is finding.
For myself, I just go with how to 'treat' 'IT'..... I really don't care what it is, where it is, how many I have.... just let's treat it and feel good.
Take care with the IV EDTA on Monday.... I just hope Neff it doesn't send you spinning downhill with a herx.
Again, last time I visited with Dr.F, he said for me to mainly take the malaria meds over the antibiotics. Then secondly, do the antifungal... then abx. So I've been taking my malarone for weeks, then diflucan for a week, then zith for only a week... seems to be ok so far, but with winter now, I'm wondering how the slippery slope of fatique might creep in. Taking lots of D3 and my injections of B12.
And to say... this is what 'works' for me.... might not work for anyone else. But I've been on this regiment for years now. We figure we'll stay with what works for now.
Neff, do you do any antifungals? I know Dr F is using it more with patients after what it did with me and the fungal meningitis that it brought on with me.
There just isn't any for sure answers with this. Our DNA decides our symptoms and how we get better with meds!
Posted by TNT (Member # 42349) on :
hadlyme,
you wrote: Neff, do you do any antifungals? I know Dr F is using it more with patients after what it did with me and the fungal meningitis that it brought on with me.
What happened with the antifungal? Did the PR somehow give you fungal meningitis?
The reason I ask is because some of my symptoms have overlapped with fungal meningitis. But I think it is just a weird overlap of symptoms from all my infections-probably mainly Bart and Babs.
Posted by Catgirl (Member # 31149) on :
Managing yeast has been crucial for me in dealing with this bug. If I don't watch it, I get a giant proto herx. I'm guessing yeast just adds to the biofilm slime (double effect).
My biggest issue has been heavy metals though. Focusing and getting rid of heavy metals has helped me more than anything for yeast. Gigi used to say how metals, parasites and yeast were all connected. She was spot on. The more parasites and metals I get out, the better I feel, and my yeast improves.
I'm not sure about doing IV chelation, but if you're going to do it, be sure to take some binders or the toxins will just recirculate in your body.
Posted by nefferdun (Member # 20157) on :
Hopefully the NP knows what she is doing. I thought the EDTA was the binder. I have taken it orally before in LipoPhos EDTA and was fine with that so hopefully this won't stir up a big herx.
I am out of anti fungals. I do have grapefruit seed extract that I can take.
Posted by hadlyme (Member # 6364) on :
TNT, I lived in AZ for 6 yrs, and while living there my last summer, I came down with a horrible itching rash, and cough. The rash would spread if I itched it, which was crazy... it was all over.
Dr. F is my major MD for everything, so here I am stumping him with these new symptoms of ??? So we did the chest xray and all ok. In AZ we have what's called Valley Fever, which is a fungal infection from the dirt. Yea... strange stuff. We figured I must be reacting to something fungal even though my lungs looked ok.
I had taken Diflucan every now and then, but with this event, he said, take the diflucan only and nothing else until we could clear this rash/itch/cough thing.
So, I did... and at 7 days of it, here comes this horrible head swelling feeling. History with me is that when I first was in treatment for lyme/babs and all back in 2001, I would herx majorly and have these swollen head feelings. So to me, here was a major herx coming on, which I hadn't had for 9 yrs!
The feeling did not go away, it got worse, and after 3 days at home in pain, a friend took me to the Scottsdale ER. After hours of tests not coming up with anything, I finally agreed to a spinal tap.
Which came up menegitis. And more tests came back as fungal. I was in the hospital for 4 more days in pain. Dr. F did not have 'rights' in the hospital that I was driven to, so I couldn't have him there, but he did have friends that were there. I didn't get to use them, but one did come into my room in the ER and ask me if I thought this had anything to do with Fry's bug... he seemed positive about it.
So anyway, after that ordeal, I cleared up. Everything went away, no more rash, no more cough. From that event, Dr. F starting looking at the antifungals in helping us. He said these protozoans/parasites are closely related to fungal/yeast little buggers. With me, we will always keep the antifungals in my "RX Diet".
Now, after I moved from my condo in Scottsdale, I found out the new owners had to tear out a bathroom wall or two, as there was water and mold in there! So, I feel now, that I was having a severe reaction to what I was living in. Even in the hot 115 summer, I had mold growing in that stupid beautiful Condo!!!
So, long story short.... haha.... yes, fungal does play a part in our protozoan according to Dr. Fry and he's researching that and other things more and more.
Posted by TNT (Member # 42349) on :
So what did the ER docs give you to treat this "fungal" infection?
I never had a reaction to mold like that that I am aware of, but wonder about that fungal connection for me because I remember moldy smells have always stood out to me-things like the smell of dough at pizza hut, freshly spread cow manure, and the musty smell of fallen leaves in the fall. I really like the smell of those leaves, but now I imagine ticks under every one. It's tooo bad.
Posted by hadlyme (Member # 6364) on :
ER doc's didn't do anything. I had an infectious dr. and another dr that I have no idea what he was or what he said each day come into my room.
They only gave me morphine for the pain, in which I vomited from, so head spine pain and vomiting... was fun.
I think what Fry is finding that we are on that fine line of fungal parasitic protozoan in our bodies anyway, and things do trigger us easier? I'm wording that in my own words so don't quote me on that....I had a feeling that my condo always felt 'moist', which is weird in the desert of AZ. But I guess whatever that reaction was, the itching hives, it was like my body's DNA could not fit the normal things... and it came out with the uncontrollable itching hives and cough.
The diflucan then set me into a LARGE herx killing what was 'in' my body big time. I have had these head swelling, spine hurt while you walk episodes before, but never had a spinal tap to confirm that they were actually meningitis. Now I know if I get them again... but not much to do with it, have to ride it out.
I now take a week of diflucan and did before this episode, and I do not get a herx. It was a flare of all that fungal that had taken over my body.
Make sense? No, but none of this does! Posted by TNT (Member # 42349) on :
I cannot imagine not getting a herx from diflucan if this critter is part fungal. It's not that I don't believe you, but you would think that it would cause a major die-off or reaction otherwise.
My LLMD told me this summer that Dr. F had told him that there were several strains of this PR and a couple of them were part fungal. I had mentioned that a recent Zyto scan hadn't come up with anything significant except a slight elevation on fungal, and he suggested that this may have been picking up PR. Though, he doesn't use Zyto and was only hypothesizing.
I get major reactions to diflucan!! Gave me parkinsonianism.
Posted by hadlyme (Member # 6364) on :
There are quite a few strains of this PR. I have personally seen the list, but not published yet. Soon, there will be more info on all this. I don't mind being a 'lab rat' to help.....and my 'fungal' episode did direct him into new areas.
Whatever was going on in my body with the hives/itching/coughing, he thinks it was a major flare.
Without 'flaring', I can handle diflucan on a weekly basis and no herx. I try and stay 'on top' of all treatment with my drugs, so to not let any 'build up' of the buggers so that the die off is huge like that again. But one never knows what will trigger the build up.
Diet I have gone more towards a gluten free one and I feel waaaayyy better than the lower fat. I still do low fat, but not the extra low. No gluten has given a new meaning in my life. But maybe I might have more of a fungal type of protozoan, and going non gluten helps me more than someone else?
I can't wait to tell Dr. F about my gluten free..... it will send him into a thinking mode for sure! First time in my LIFE, my bowels work. I've never had this ever before, ever. And the tingling vibrating in my legs are less.
Posted by TNT (Member # 42349) on :
That's great about gluten free helping you.
When's your next appt.? Will have to sign out with this question. Goodnight all.
Posted by nefferdun (Member # 20157) on :
That is great that gluten free has helped you so much hadlyme. Have you ever had 23&ME? It shows if you have a tendency for celiac disease. I do not according to that, but I wonder how accurate it is. It seems to me that soy is more of a problem - and I love that too.
I had the IV EDTA chelation today. Have a headache.
Posted by Catgirl (Member # 31149) on :
Hadlyme, awesome you are feeling better without gluten! I am actually surprised that you were eating it. I'm sure you know it's a no no for lyme patients. The fact that you do better without it is telling. IMO, lyme never completely goes away, it just goes into remission.
I'm with you, I don't do the extra low fat diet either, although I have cut it a lot. Cutting out animal products seems to make the biggest difference for me. I still have a small amount here and there though.
Posted by Catgirl (Member # 31149) on :
Neff, how are you feeling today (better I hope)?
I can no longer take soy. Have you read "The Soy Deception" yet? I happened to see it at my dentist's office. I read one sentence and bought the book: soy depletes magnesium. The Whole Soy Story (Daniels) is supposed to be good too.
I am feeling fine today. I had a little trouble sleeping but that is typical.
I believe my symptoms are more bart like lately - maybe mycoplasma. Since I can't get drugs, I am ordering some HH2 to see if that helps or at least calms it down so I don't get worse.
I get a protein drink that I love and it is full of soy. I am not supposed to have soy because of the CBS mutation but it also makes me gassy. I notice I am more wired up when I eat a lot of sulfur including soy. As it is genetically modified, that makes it even worse.
I had to develop a taste for soy and soy products like tofu. Now I like it because it adds texture and variety to an otherwise very bland diet. Soy actually has more fat that beans so it is not the best choice for this diet. It would be better for me to use whole eggs now and then.
Posted by Catgirl (Member # 31149) on :
Bump.
Posted by Catgirl (Member # 31149) on :
Forgot to update. I've tried just about everything for this bug. I don't seem to make any progress unless I'm on anti parasite meds, plant based diet, and also eating very low fat. Fat brings it right back. So does animal products (arginine), and so does minerals, which is a problem when dealing with heavy metals.
I would love to hear how Neff is doing. I don't think she killed it, but remember she did keep it down with edta and fat absorbers. I really hope she killed it somehow.
I am tired of fighting it. It feels like a never ending story. I am thinking of starving it now. Also considering rife. I would love to know if someone has been successful with rife here.
Also, every time I hit this bug hard bart pops up! I think they live together or maybe there is a BLO that is actually another form of proto. I know Dr. F has discovered many forms of this bug.
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