nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Just keeping my fingers crossed -
I have no symptoms except occasional hoarseness in my voice and occasionally a bit of a cough, which indicates protomyxzoa is still active. I can't emphasis enough how much treating protomyxzoa has helped me. Last winter I was very sick.
I began the low fat vegan(ish) diet the end of March. Around the same time I began the methyl cycle supplements for my specific mutations. I have CBS so it also requires a vegan diet.
I began taking ivermectin around April, and about two weeks later got stromectol. I only had a months worth of stromectol which I stretched into 6 weeks. When I ran out I tried taking ivermectin again but it did not agree with me. By this time though the stromectol had gotten me pretty much symptom free. I had a great summer.
When I got my new order of stromectol (which was months overdue) I took it off and on as tolerated. I tried adding in mino and then doxy but could not tolerate either of them longer than a couple of weeks. Currently I only take 12 mg of stromectol about every 7 o 10 days. It makes my stomach burn and gives me headaches so I wait until I begin to get PR symptoms before taking it again.
I began LDN in the spring after several weeks on stromectol, and had no trouble with it like I did before. I believe when I tried to use it in the fall, it was bringing out the Protomyxzoa, which was causing me to have bladder irritation.
So that is what I have done and it has made a huge difference. I feel great. I used to gage where I was at by how hard it was to climb a flight of stairs. Last winter I was gasping for breath and had to sit and recover at the top. Now I can climb two flights of stairs without losing breath. In fact, I can run up the first flight.
The LDN corrected the thyroid condition I have - probably Hashimoto's disease. My body temperature was between 96.8 and 97 degrees all of my life. Now, for the first time, it is around normal 98.6. I don't take any thyroid meds any more.
I have no problem with the low fat diet but I do include some dairy and occasionally egg whites. I have lost 20 pounds but I eat as much as I want and feel very satisfied. I hesitate to say this as I might jinx myself. . . . I feel healthy.
I have hyper coagulation which is of course is worsened by PR which causes biofilm. I take boluoke for that and the methyl supplements help. I also had high ferritin which makes pathogens more virulent. I took lactoferrin for awhile and IP6. Not eating meat probably helps keep my iron levels low.
I hope some of you that are struggling and not getting better will try this and see if it helps you. You do need to address all the infections you have but I believe the underlying culprit that makes it so hard to recover is protomyxzoa.
-------------------- 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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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Great news. Sounds like you have really worked hard to achieve this result.
Posts: 2888 | From USA | Registered: Mar 2004
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
So glad to hear it Neff! And keep posting please.
I am on LDN and having a hard time with it....I think it brought out/activated viruses...I have a real problem with swollen ln, sore throat, and mouth sores now. Wondering if I should stop it and restart.
Also on Ivermectin every 4 days. I'm not at all sure that it's the answer to all my problems but I have seen a bit of a clearer head and lessened twitching which is great. Also anxiety is back full force which may be a herx.
Posts: 3528 | From US | Registered: Apr 2007
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Thanks
Posts: 499 | From Malta, NY | Registered: Dec 2008
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Dogsandcats
Frequent Contributor (1K+ posts)
Member # 28544
posted
Low Dose Naltrexone
Good for you nefferdun. You have had a long haul and it is great to hear you have had some improvements!
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Wonderful news, Nefferdun!
Do you know if your high ferritin was caused by the infections? I'm asking because I have extremely high ferritin with normal iron level.
I'm going to ask my new LLMD about it tomorrow, but just wondering what you know about this.
Thanks,
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
My daughter has just cut out all pain medications and is managing very well. She wanted to find out where she was after one year of Ivermectin.
Big improvement, so far.
Posts: 2903 | From AZ | Registered: Feb 2006
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Thanks for the "well wishes" everyone. I usually relapse in winter so I have been apprehensive but so far I am still ok. I also got a "daylight" lamp to help with SAD and that might be helping too.
CD57, more than likely the LDN is bringing out something you need to treat. PR can causes sores on the head, sore throats, hoarse voice, dry cough, lung inflammation, tooth pain - maybe it is causing the sores in your throat and mouth too. Have you tried ivermectin to see if it helps?
Kelmo it is great your daughter is pain free. I hope she continues to improve.
Razzle, I don't know much about my ferratin versus iron. I just had the one blood test last winter but I remember two other doctors commenting on my high iron levels and one of them was way before I got lyme - so I am pretty sure I overload it. One of the mutations I have causes this. I need to get everything retested.
-------------------- 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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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
Glad to hear you're doing better. Hope it continues on the upswing. I couldn't handle Ldn, made my nervous system whacky hyper.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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