Topic: PROTOMYXZOA - support for those treating it
TNT
Frequent Contributor (1K+ posts)
Member # 42349
posted
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.
Posts: 1308 | From Eastern USA | Registered: Oct 2013
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posted
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!
-------------------- 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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TNT
Frequent Contributor (1K+ posts)
Member # 42349
posted
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.
Posts: 1308 | From Eastern USA | Registered: Oct 2013
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posted
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.
-------------------- 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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TNT
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posted
That's great about gluten free helping you.
When's your next appt.? Will have to sign out with this question. Goodnight all.
Posts: 1308 | From Eastern USA | Registered: Oct 2013
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nefferdun
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posted
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.
-------------------- 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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Catgirl
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Member # 31149
posted
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.
-------------------- --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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Catgirl
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Member # 31149
posted
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.
-------------------- --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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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
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.
-------------------- 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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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Bump.
-------------------- --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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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
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.
-------------------- --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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