So I'm starting to think that Protomyxzoa aka "FL1953" aka "The Fry Bug" is a big part of what is left for me.
Here is why:
Dr C says the following tests can be indicative of Protomyxzoa: -Bands 23 and 41 positive on IGENEX Lyme Western Blot -Weak positive on IGENEX IFA for Babesia Duncani with Negative Babesia Fish
I have meet both of these conditions.
Dr. C says Symptoms of Protomyxzoa are the following: Signs and Symptoms – Cold hands and feet, often clammy – Poor to “pathetic” capillary refill, skin color changes – pale, dusky, hyperemic (red), purple, mottled – HA, pain behind/in eyes – Scalp sores – Sinus congestion, PND, teeth pain – Palpitations – SOB, air hunger, dry cough, episodic and periodic – Abdominal pain, nausea, IBS – Bladder pain/dysfunction, interstitial cystitis – Joint and muscle pain, weakness, twitches – Profound fatigue, complete loss of aerobic exercise tolerance – Sweats (night/day), chills, flushes, dizziness – Insomnia, profound brain fog, poor balance – Anxiety, panic, OCD, irritability, agitation, impulsivity, ADD, emotionality – Hypercoagulability
I've had nearly all of the above since my flare started in December, except for maybe the fatigue. But everything else is spot on, the bladder issues in particular. I also have tinnitus and floaters, but I think that can also be Protomyxzoa.
In addition, I flare on antiparasitics like Alinia, Ivermectin, and Artemisinin.
Bart is likely in the mix too...but I think perhaps I do have proto.
Had some blood drawn for Fry and will soon find out. Maybe this is the missing piece?
I'm also going to be seeing a local ART practitioner trained by Dr K. I've never had any energy testing so maybe that will help.
Thoughts?
Posted by bluelyme (Member # 47170) on :
I heard artminasin is effective .they just dont know...did iver /alinia help?
Posted by bcb1200 (Member # 25745) on :
Yes, treatment protocols are Ivermectin, Alinia, Artimisinin, etc.
I've flared on all in the past. The best I've ever felt was after 6 months of parasite tx with these types of drugs and herbs.
Posted by bcb1200 (Member # 25745) on :
Here are Dr. C's treatment protocols for Protomyxzoa
Approach to treatment – Eliminate dietary fats – McDougall diet • Some patients may still need restorative fats – Anti-parasitic agents – three or four at same time • Alinia, Artemisinin, Albenza, Ivermectin • Bab-2, A-Bab, Cryptolepsis, A-Bart, Coptis chinensis • Cumanda • Sometimes macrolide antibiotic – Biofilm disruptors • Enzymes – fibrinolytic, proteolytic and others
Enzymes: – Bolouke - lumbrokinase – Nattokinase (36 mg gelcap from ARG most efficacious!) – Serrapeptase – Interfase Plus – Interfase – Plant Enzyme Digestive Formula – Digestzymes – Wobenzyme – Intestazyme – Marcozymes – Others.....
Restorative fats - controversial – Omega 3, omega 3/6/9, phosphatidyl choline, phosphatidyl serine, glycerophosphocholine, PhosSerineDHA – Needed in severely debilitated patients, children • Nutrients – Trace minerals – Methylation support – Detox support for kidneys, liver/GB, lymphatics
Most common treatment regime (all used concurrently): – Alinia 500 mg BID 2-5 days on 2-7 days off pulsed up to 10 times OR Artemisinin 100 – 500 mg BID pulsed same way (often alternate both sequentially) – Bab-2 from Beyond Balance is helpful in about 80-85% cases starting as low as 5 gtts daily working up to as high as 50 ggts TID. A-Bab or A-Bart (Byron White Formulas) are helpful is about 15-20% cases. – Coptis chinensis (I use Golden Thread Supreme from Supreme Nutrition) 500mg dosed from one QD to two BID with food – Cumanda (Nutramedix)10-20 gtts daily, often at bedtime
– Enzymes: ALWAYS need fibrinolytics, either lumbrokinase or nattokinase as well as broad classes of enzymes, most commonly use Serrapeptase, Plant Enzyme Digestive Formula (DFH), Interfase Plus.
– DRAINAGE, DRAINAGE, DRAINAGE – blood, liver, kidney, CNS and lymphatic purifiers. I use Nutramedix, Energetix and Pekana remedies primarily. Xymogen, Designs for Health and Thorne very useful as well.
Herx to treatment: – Massive body pain, HA, brain fog, anxiety, paranoia, rage, impulsivity, hallucinations, irritability, twitching, fatigue, joint pains, myalgias, LE pain, teeth pain, sinus congestion/ pressure, abdominal pain, diarrhea or constipation, left upper quadrant pain, bladder pain/irritability, incontinence, sleep disturbance, worsening of hypercoagulability – Often need to resolve by increasing or changing enzymes and drainage, sometimes dramatically for few days, and holding killers until symptoms resolve – For some very chronic patients, able to make dramatic shifts in decades old symptoms by killing this organism!
Posted by NotQuiteAntonio (Member # 47277) on :
I was going to respond to a much older thread on this, but I figured, "why go digging it up?"
So, while it sucks to have to be in that situation, thanks for giving me the opportunity to be a little selfish, hoping someone will give me some fresh ideas as to how I can treat this as well, or at least keep it at bay.
See, much like you, I've begun to suspect this. I've looked into the possible symptoms, lining some of them up with my own. I've looked into the suggested treatment pathways, herbal and pharmaceutical. I'm already taking some things that could possibly have action against it, and I could easily take more, when the time is right (other health issues to get straightened first, money as well).
But, the biggest snag is the fact that a diet low in fat is called for.
Those other health issues I spoke of - a slew of GI problems, multiple chemical sensitivities, and a twisted methylation cycle. Oh, Lyme and all that too of course. All of which are tied together, in my opinion. I mean, it only makes sense.
Anyway, because of that, I can't do fruits, grains, even some of the higher carb, starchy veggies. None of that yummy stuff.
Fat, protein, and a few veggies is all I've got, and I even have reactions to those. It's a mess.
Really, the only choice is to abandon this for now, trying to eat the fats around the biofilm busters and other treatments, while I figure out my gut, methylation, and detox.
I just figured I'd put the perspective of "well, what about when I weigh 120 lbs as a 23 year old guy, because I have screwed up insides, can't eat this, can't eat that, and desperately need my fat, doctor?" out there. That's me. Well, almost - if i could afford a (good) doctor. lol
Apologies for hijacking the post.
I do hope you get some answers.
Posted by Catgirl (Member # 31149) on :
Bcb, some of those symptoms are common with babs, some lyme, some bart which is why I think many people can't distinguish proto.
You can do a quick test on yourself to see if you have it simply by eating: no animal products/arginine and very low fat. If you feel better then you'll know. I felt better in 3 days. If not, then maybe it is a combo of things.
NotQuiteAntonio, there was another person who used to post here who was successful taking nopal -cactus to absorb fat and something else (sorry can't remember). Do a search for Nefferdun. She didn't kill it, but was able to eat more food/fats, which may be a good way to keep it under wraps.
Posted by bcb1200 (Member # 25745) on :
Thanks Catgirl.
Nefferdun appears to be in 100% remission. Her last posts indicated she even stopped taking the cactus supplement/fat binders and was off Ivermectin for months. So it seems she did kill it, or at least got it 100% in remission.
I appreciate all the feedback. I am getting my Fry results in a few weeks so will know then. It could be still Babs/Bart together, but some of my sx seem specifically PR related (Sinus pressure, etc, etc)
Posted by Lymetoo (Member # 743) on :
Yes, but how did she treat it? Last I heard was that Dr F wouldn't treat her... so how did she treat it?
Posted by bcb1200 (Member # 25745) on :
She self treated. There are a few threads on it
Posted by hadlyme (Member # 6364) on :
Hi.... I go to Dr. F, and have been in treatment for years with him. Your fist post on the symptoms of the protozoan is something new to me. Never have seen that list or heard of half of those symptoms, ever.
That list did not come from Dr. F is what I'm trying to say. Interesting.
Yes, Nef is doing great, and I think it was the ivermectin that helped her, but other things too? And yes, Dr. F wasn't all that helpful with her and not treat her. It was weird. We agreed to disagree on him, as I really like him as my doctor.
We all react to drugs so differently. Dr. F said he'd never put me on ivermectin... thinking my body wouldn't handle it well.
I take in a rotating manner, antifungals.. Diflucan, antimalaria's... Malerone, and antibiotic... Zithromax. The protozoan is sort of a fungal type too as I understand it. But.... there are many different types of protozoans... so we really can't compare? Mine does well with Diflucan hitting it.
He's had me on this for years and I'm pretty 'normal'. I work full time, and forget that I'm 'sick' most of the time.
There's no talk of all those other things that you first mentioned on taking. No enzymes etc... I've asked, and it's like, if you want to take them. He's not just a protozoan\lyme type of dr... he is finding what causes autoimmune diseases, and if this protozoan triggers them. Its a fine line on 'who' he is as a doctor. If I broke an ankle or had an earache, I would see him, as he's my GP MD too.
Yes, the low fat thing is still a thing. He knows I have to have my meat... so I watch what I eat. I did the extra low fat years ago, and felt better for a long time. Then after awhile, it didn't matter if I was low fat or not.
The low fat eating and the no magnesium is because under a microscope, they are seeing that fat and magnesium builds up the biofilm around the buggers, thus they hide better and harder to 'hit' and kill. The protozoans play a different game on how to kill them. I used to think I needed magnesium a lot, but when I quit taking it, and kept taking my meds, I did feel better in the long run.
With all things, common sense on what our bodies are telling us. There just can't be a one size fits all with this.
But again, your symptoms for protozoa's is a new one for me. I don't have half of those symptoms and I have the buggers.
Posted by bcb1200 (Member # 25745) on :
Thanks hadlyme. The symptoms are what is listed on protomyzxoa.org and also from the very well respected Dr. C
She has killed this bug. I don't believe Dr. F has.
There is more info on www.betterhealthguy.com Search for Protomyxzoa and you can find lectures from her with some .pdf's of her presentations from 2012. Good stuff.
I trust Dr. C. She knows what she is talking about.