Guest guest Posted February 18, 2011 Report Share Posted February 18, 2011 Hi I am still here but concentrating on the Chlamydia Pneumonia ....Cpnhelp.org website (I started seeing a specialist in Sacramento ) I was recently diagnosed with Cpn and am on an antibiotic protocol I've been meaning to update the group Not sure but I think I am getting results I am also on a lyme protocol since I may have that as well Steve On Feb 18, 2011, at 4:24 PM, Marcia wrote: > I haven't been posting much recently, just haven't felt up to it. > However, it seems like overall number of posts have fallen on this > forum as well. I can think of three, no wait, four possible reasons: > > 1. Everybody got better and went out to live their lives! (ha ha ha, > I wish) > > 2. Everybody got a lot worse, and like me didn't feel like posting > much. (I hope not) > > 3. There aren't as many burning issues at the moment, or promising > new theories or treatments to talk about. > > 4. The conversation has migrated to other places, boards, forums. > > Or maybe it's a mix of the above? > > If the conversation has migrated, mayhap someone could let me know > where. Even if I don't feel like posting, I still like to browse to > try to keep up with the discussion. > > Thanks, > > Marcia on > in Salem, Massachusetts > > > Watch your thoughts; they become words. Watch your words; they become actions. Watch your actions; they become habits. Watch your habits; they become character. Watch your character; for it becomes your destiny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2011 Report Share Posted February 18, 2011 Hi Marcia, I think posts have dropped off in this forum for several reasons. A couple of them go back a year or two. 1. I noticed that posts dropped off considerably when the group voted to allow psychological treatments and topics, such as GET, CBT, Gupta, etc. Many people were upset and left the group. /surveys?id=2728634 2. I noticed that posts dropped off as people moved over to the Yasko group to investigate that for themselves. Many people are not well enough to handle multiple groups and have temporarily moved over to one of the Yasko boards. 3. Cort revamped his Phoenix Rising site to include much easier navigation and a forum. This forum is more like the Pro Health forum and less like a forum which resolved many issues users were having with the interface. Plus, he single-handedly searches for current studies while this group is user directed. This makes it easier for those of us who are not well to keep up with the latest studies as he has done and is doing all of the hard research and footwork. http://aboutmecfs.org/ While the lead moderator's goal for this site is quality vs. quantity, I do miss the increased traffic. The archives in this forum are so rich and it is easier to do everything in one place but I just don't think that is possible to do and keep up with the latest. Seems that we should really be on at least 3 forums, a support group, an experimental group such as this one, and a research based site like Cort's. Hope that helps, Marti > > I haven't been posting much recently, just haven't felt up to it. However, it seems like overall number of posts have fallen on this forum as well. I can think of three, no wait, four possible reasons: > > 1. Everybody got better and went out to live their lives! (ha ha ha, I wish) > > 2. Everybody got a lot worse, and like me didn't feel like posting much. (I hope not) > > 3. There aren't as many burning issues at the moment, or promising new theories or treatments to talk about. > > 4. The conversation has migrated to other places, boards, forums. > > Or maybe it's a mix of the above? > > If the conversation has migrated, mayhap someone could let me know where. Even if I don't feel like posting, I still like to browse to try to keep up with the discussion. > > Thanks, > > Marcia on > in Salem, Massachusetts > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2011 Report Share Posted February 18, 2011 I am having success with LDN > > > > > > I haven't been posting much recently, just haven't felt up to it. > However, it > > seems like overall number of posts have fallen on this forum as well. > I can > > think of three, no wait, four possible reasons: > > > > > > 1. Everybody got better and went out to live their lives! (ha ha ha, > I wish) > > > > > > 2. Everybody got a lot worse, and like me didn't feel like posting > much. (I > > hope not) > > > > > > 3. There aren't as many burning issues at the moment, or promising > new > > theories or treatments to talk about. > > > > > > 4. The conversation has migrated to other places, boards, forums. > > > > > > Or maybe it's a mix of the above? > > > > > > If the conversation has migrated, mayhap someone could let me know > > where. Even if I don't feel like posting, I still like to browse to > try to keep up > > with the discussion. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2011 Report Share Posted February 19, 2011 Hi Louella and Marti I have had success also, even returned to work part time 4 hrs 4 days a week, its 7 years since I had to leave work due to cfs. Had two pay cheques already, (spent them on clothes - I'm having a ball). No relapses, walking 40 minutes everyday at 6.30am. Significant changes, have my life back, the last part in my recovery after the biofilm treatment, antibiotics for gut flora and stool implant was discovering I had high oxalates in my urine from a Great Plains Lab organic acid test. Joined the trying low oxalate group, then went on a low oxalate diet, put in mag and cal citrate with meals to bind oxalates in food and supplemented B5 (coenzyme A, krebs cycle). Haven't looked back, not cured, but the body is healing and everything is humming along brilliantly. Job now is to heal the leaky gut. Still on methylation sups and lots of other sups. > > I haven't been posting much recently, just haven't felt up to it. However, it seems like overall number of posts have fallen on this forum as well. I can think of three, no wait, four possible reasons: > > 1. Everybody got better and went out to live their lives! (ha ha ha, I wish) > > 2. Everybody got a lot worse, and like me didn't feel like posting much. (I hope not) > > 3. There aren't as many burning issues at the moment, or promising new theories or treatments to talk about. > > 4. The conversation has migrated to other places, boards, forums. > > Or maybe it's a mix of the above? > > If the conversation has migrated, mayhap someone could let me know where. Even if I don't feel like posting, I still like to browse to try to keep up with the discussion. > > Thanks, > > Marcia on > in Salem, Massachusetts > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2011 Report Share Posted February 19, 2011 Well lets see. Most importantly I feel better in general: less aches and stiffness in the morning, much,much less fatigue, get moving quicker instead of the usual which is more like and 85 yr old, sleep better, mood better not so hopeless and dark, not as befuddled with cloudy thinking, focus better & think straighter , not as sensitive to temperature and less wild reactions minute to minute to temperature, fine motor skills improved so I am able to sew and write with comfort and dont drop things, sometimes I even perspire which is a sign that my " normal " body detox process is trying to do its job, lung congestion gone,asthma gone, have been able to eliminate or cut in half medications. A couple of other things that dont have to do with usual symptoms most people with CFS complain about but seem specific to me are: have been allergic to animals since early 20's but have always had them anyway. Normally if my cat scratches me I have extreme itchiness and redness and if I pet a cat or dog or rabbit or horse and forget to wash my hands and then rub my eyes, they get itchy and swollen, thats gone. I am 65 now so this has been a problem for 50 yrs. The other thing I have and which the LDN has helped a bit with is 2 yrs ago I started getting these cystic like hard bumps on my upper arms, upper back and scalp. I dont know what they are as I have never had any problem with acne either during my youth or when my hormones went crazy through menopause and I dont even know if thats what these bumps are, but I have had some of the same ones for 2 yrs and they have not responded to any treatment, from the Dr or over the counter. I have to wear long sleeves all summer! These have subsided as in no new ones and the ones I have are getting smaller. Still have them though and whats worse still have red scars where they have gone. I guess its some detox thing but I have never seen anything in people posting having this problem on Corts forum or any of the forums or information I have read. Recently I got messed up on my LDN dosage and was measuring out my dose incorrectly because of my poor math skills(that has not improved) and had to stop the LDN for 3 days and begin all over and boy did I see in technicolor what life is like without the LDN. I hope I can get more improvement on these lesions and scars so I can wear short sleeves when it gets hot here but not holding my breath on that one. > > > > > > > > > > I haven't been posting much recently, just haven't felt up to > > it. > > > However, it > > > > seems like overall number of posts have fallen on this forum as > > well. > > > I can > > > > think of three, no wait, four possible reasons: > > > > > > > > > > 1. Everybody got better and went out to live their lives! (ha > > ha ha, > > > I wish) > > > > > > > > > > 2. Everybody got a lot worse, and like me didn't feel like > > posting > > > much. (I > > > > hope not) > > > > > > > > > > 3. There aren't as many burning issues at the moment, or > > promising > > > new > > > > theories or treatments to talk about. > > > > > > > > > > 4. The conversation has migrated to other places, boards, > > forums. > > > > > > > > > > Or maybe it's a mix of the above? > > > > > > > > > > If the conversation has migrated, mayhap someone could let me > > know > > > > where. Even if I don't feel like posting, I still like to browse > > to > > > try to keep up > > > > with the discussion. > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2011 Report Share Posted February 19, 2011 Its the only thing that has helped me. I will admit that because of a lack of funds to have all sorts of tests done and see and endless stream of dr's who know nothing, as well as being confused about which test to get and which supplements to take its really the only thing I have tried. Its cheap and I dont need a Dr to get it. I started about 5 mos ago at 0.05 for a week then 1mg for a week ,1.5,2,2.5,3,3.5......each time for a week. I never made it beyond 3.5 cause thats when I messed up the dosage and had to start over........now I am up to 2mg. In a few months I will be on Medicare and I have heard that some of the test I want to take will be covered. Looking forward to getting more info about possible toxins and nutritional imbalances that will help me add more to my protocol. But for now at least the LDN is giving my immune system some help When I first started I had a few minor unpleasant reactions, like disturbed sleep, headache, the usual CFS faux flu but it always worked itself out. I just sat with each dosage increase until my body worked it out and I stabilized. I think going slowly is very important. At least 1 week per each increase.....more if you still get uncomfortable symptoms. I take it every night around 10 right before bed. I think I started noticing improvements about the 2nd or 3rd week. Did you start low and go up slowly? Do you think you will try again sometime. I know from being on the LDN group and Corts forum that sometimes people just dont seem to do well with it. I have noticed that if I dont pace like I should, or am under enormous emotional stress I seem to spiral down, but bounce back easier. Because my fatigue is so much less I sometimes take advantage and push more than I should.....making up for lost time LOL If I go past a certain threshold , especially some type of detailed sewing project or have some complex paperwork that requires lots of concentration the CFS cognitive fog will slowly creep over me and soon everything looks the same and I cant differentiate between one thing an another......it all becomes a blur. But of course the threshold bar has been raised considerably by LDN. I really dont know if LDN will be able to get my immune system to work well enough to actually give all the toxins and viruses and retroviruses and yeasts and molds a good kick in the pants to the point that they cease to exist or whether it just makes me feel better or exactly how it works it just works. Been waiting 15 yrs to find something that would help me. > > Delores, > > This is an extremely encouraging report! (understatement of the year) > Would you mind sharing your dosage, if it's daily, and how long it took > you to realize it was working for you? > > I tried it for 4 months in '09 and had about 3-4 days where I felt I was > reborn and then all the other days I was even worse than usual. After > experimenting with different doses, down to 1/2 mg, then trying it only > every few days, I finally gave up. > > I'd give my eyeteeth to have results anywhere near yours! > > Way to go! > > Sharon > > > [mailto: ] On Behalf Of dolores > > Sent: Saturday, February 19, 2011 1:19 PM > > > Well lets see. Most importantly I feel better in general: less aches > and stiffness > > in the morning, much,much less fatigue, get moving quicker instead of > the > > usual which is more like and 85 yr old, sleep better, mood better not > so > > hopeless and dark, not as befuddled with cloudy thinking, focus better > & think > > straighter , not as sensitive to temperature and less wild reactions > minute to > > minute to temperature, fine motor skills improved so I am able to sew > and > > write with comfort and dont drop things, sometimes I even perspire > which is a > > sign that my " normal " body detox process is trying to do its job, lung > > congestion gone,asthma gone, have been able to eliminate or cut in > half > > medications. > > > > A couple of other things that dont have to do with usual symptoms most > > people with CFS complain about but seem specific to me are: have been > > allergic to animals since early 20's but have always had them anyway. > > Normally if my cat scratches me I have extreme itchiness and redness > and if I > > pet a cat or dog or rabbit or horse and forget to wash my hands and > then rub > > my eyes, they get itchy and swollen, thats gone. I am 65 now so this > has been a > > problem for 50 yrs. > > The other thing I have and which the LDN has helped a bit with is 2 > yrs ago I > > started getting these cystic like hard bumps on my upper arms, upper > back and > > scalp. I dont know what they are as I have never had any problem with > acne > > either during my youth or when my hormones went crazy through > menopause > > and I dont even know if thats what these bumps are, but I have had > some of > > the same ones for 2 yrs and they have not responded to any treatment, > from > > the Dr or over the counter. I have to wear long sleeves all summer! > > These have subsided as in no new ones and the ones I have are getting > > smaller. Still have them though and whats worse still have red scars > where > > they have gone. I guess its some detox thing but I have never seen > anything in > > people posting having this problem on Corts forum or any of the forums > or > > information I have read. > > Recently I got messed up on my LDN dosage and was measuring out my > dose > > incorrectly because of my poor math skills(that has not improved) and > had to > > stop the LDN for 3 days and begin all over and boy did I see in > technicolor > > what life is like without the LDN. > > I hope I can get more improvement on these lesions and scars so I can > wear > > short sleeves when it gets hot here but not holding my breath on that > one. > Quote Link to comment Share on other sites More sharing options...
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