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. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
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!
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
| IP: Logged |
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Ha ha! I have to cut back the avocado now. I eat 5 chips and 3 nuts (wow--lol!).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
| IP: Logged |
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
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.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
| IP: Logged |
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
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?
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
| IP: Logged |
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
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.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
| IP: Logged |
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
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.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
| IP: Logged |
TNT
Frequent Contributor (1K+ posts)
Member # 42349
posted
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
Posts: 1308 | From Eastern USA | Registered: Oct 2013
| IP: Logged |
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
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.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
| IP: Logged |
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
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.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
| IP: Logged |
TNT
Frequent Contributor (1K+ posts)
Member # 42349
posted
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.
Posts: 1308 | From Eastern USA | Registered: Oct 2013
| IP: Logged |
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
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.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
| IP: Logged |
posted
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?
-------------------- Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again! Posts: 941 | From AZ-MT | Registered: Oct 2004
| IP: Logged |
TNT
Frequent Contributor (1K+ posts)
Member # 42349
posted
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.
Posts: 1308 | From Eastern USA | Registered: Oct 2013
| IP: Logged |
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
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?
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
| IP: Logged |
TNT
Frequent Contributor (1K+ posts)
Member # 42349
posted
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.
Posts: 1308 | From Eastern USA | Registered: Oct 2013
| IP: Logged |
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
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.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
| IP: Logged |
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Just found this but not alert and focused enough right now to completely absorb it. It seems to address my question.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
| IP: Logged |
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
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.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
| IP: Logged |
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
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.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
| IP: Logged |
posted
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!
-------------------- Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again! Posts: 941 | From AZ-MT | Registered: Oct 2004
| IP: Logged |
TNT
Frequent Contributor (1K+ posts)
Member # 42349
posted
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.
Posts: 1308 | From Eastern USA | Registered: Oct 2013
| IP: Logged |
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
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.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
| IP: Logged |
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
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.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
| IP: Logged |
posted
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.
-------------------- Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again! Posts: 941 | From AZ-MT | Registered: Oct 2004
| IP: Logged |
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
| IP: Logged |
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
| IP: Logged |
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
| IP: Logged |
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
| IP: Logged |
TNT
Frequent Contributor (1K+ posts)
Member # 42349
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
| IP: Logged |
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
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
| IP: Logged |
Catgirl
Frequent Contributor (5K+ posts)
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
| IP: Logged |
Catgirl
Frequent Contributor (5K+ posts)
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
| IP: Logged |
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
| IP: Logged |
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
| IP: Logged |
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
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
Printer-friendly view of this topic