Victoria I am here. Are you?

Discussion in 'Fibromyalgia Main Forum' started by CelticLadee, Jul 12, 2009.

  1. CelticLadee

    CelticLadee New Member

    Here is my update:
    7/2004-11/2007 Did the Marshall Protocol. After a couple of years of some small hopeful improvements I had to quit. The last couple years I was getting much sicker and my pain was increasing terribly. Also my liver and gall bladder were acting up. (fatty liver/gall bladder attacks)
    4/2008 Began taking NAC in hopes of trying the Stratton/Wheldon protocol. Had almost instant and very notable reactions. "NAC flu"
    Began working up dose from 600 mg. daily to 2400 mg. daily. This took a few months as I was very reactive to it. It had the benefit of helping my liver function and eliminated gall bladder attacks eventually. Worked up to take all their recommended supplements over several months.
    9/2008 Began working to ramp up recommended antibiotics on the S/W protocol. I was very reactive to them causing die off, porphyria, etc. Last several months I have finally worked my way up to do the monthly pulses which have vastly improved my energy. Finally I have no sun induced illness and my pain levels are down. I'm not well, but I am not suffering either. Also my activity level ability has not been this good since before I first was getting sick in 2001-2002. It is such a huge relief for me to finally be able to function again. You know what I mean!
    Hope to hear from you soon.
  2. spacee

    spacee Member

    Haven't seen Victoria around in a while.

    Thought I would give a hello! Sound like you are doing better glad to hear that! I have slipped and not as well as a few years ago. Just took 5 days of doxy and on the 5th/6th days had the best couple of days in a few years so have an appt to try the Road Back Foundation protocol/suggestions. I have tested positive for autoimmune problems.

    Have not heard of the Stratton/Weldon protocol. Will look into it.

    Huge relief for you to finally function glad to hear that!

    Hope Victoria shows!

  3. victoria

    victoria New Member

    I also wrote to you on your post on the lyme board here.

    Thanks for the full update. It's interesting on the overlap with not being able to tolerate the sun... I'm not familiar with S/P protocol, but my DH and I have been really helped by supplements in the past. NAC never seemed to do anything for me on its own. Did it take you 5 months before you tried abx for the CPn?

    While almost all of my gains have not reversed, I don't know how I'll do with Phase 3 since so much time elapses between each phase for me for 1 reason or another. This past year it's because I've had to go back and forth between the states and Mexico as we were moving -- add to that having to take the time to adjust to elevation (7200').

    I think that persistance is so necessary along with the courage to try different things (and a doctor to help)... even tho I think everyone's gotten down at times and just stop everything for a while. Even my son has done that (well, IS doing that) even tho he still has problems from the Lyme. That said, he is going to try an alternative protocol next month.

    Thanks for posting, I've followed your posts for a long time. So many people come and go, it's great to get updates and find out what you've found out, plus what helps or hasn't.

    all the best,

  4. CelticLadee

    CelticLadee New Member

    OMG it is good to hear from you! Way too long between. So sorry to hear that you have had a bad time of it. Glad to know you are still trying to get better. Never give up!

    Victoria sent me a message via MP board asking how I am doing? So I came here to give her an update. I figured she'd be around but guess not. I needed to do an update here anyway as Mikie had asked me to periodically drop in to do so. She around? & is Tansy? You all helped me so much during my first couple of years of figuring stuff out. Time flies! Seems like another life when I was doing Transfer Factors.

    I am on it too but the daily Doxy alone does not do the trick for me. I finally submitted to the inevitable. I am on three antibiotics (Zith on MWF) (monthly 5 day Tini pulses) and then lots of supplements everyday to clear the toxins, etc. Including vitamin D! HA! I had to slowly work my way through to full doses of everything as I had bad herxes from most all of it. But things are settling down for me now and I am so happy I am finally able to actually do things again. What hell we all go through. Healthy folks just do not have a clue even when you share things with them. They don't know the half of it. Not even those close to us. But we certainly do get an education and we certainly do get tough. LOL

    Honestly the Stratton/Wheldon protocol is the best thing I have done thus far. The Tini pulses gave me back the energy missing for so many years. I can physically do work all day now for the first time in 7 years! I just hope and pray it continues to do me so much good and I get totally well. Please do read about it at the Cpn website. Oh yeh, I have heard some good things about the Road Back Foundation. Sorry to here you have the autoimmune troubles on top of everything else you have been through. Do you hang out here much?

    Well, it's late so I better get to bed. Thanks so much for sharing and for your kind words. Truly good to hear from you!

  5. CelticLadee

    CelticLadee New Member

    I am headed to bed but saw you posted after I wrote to Spacee. I will read your messages tomorrow morning and get back to you. Great to connect with you again. Good night. CL

    ADD ON:
    Next day: Good morning Victoria. I had a rough start today. A week after a abx pulse it all can hit ya. If I don't keep the secondary porphyrins under control I have a bad time. At least I now know what ails me and what to do about it. Nothing worse than being clueless is there? Can't fight back then.

    Anyway, first thing when I wake up with nausea and headache from toxins (to get my stomach settled I drink ginger root tea). But then later the glucose tablets help me level the playing field along with methyl B12 lozenges and Emergen-C drink. At dinner I take 10 Yaeyama Chlorella tablets and before bed I take 12 caps of activated charcoal to keep my porphyria under control. All these years when I went out in the sun and got sicker it was secondary porphyria induced from Cpn. I have gotten so much better now after killing enough of the little monsters so that now I can be in the sun for hours with good energy working in my gardens without my past sick reactions. It is a glorious freedom after so many years of avoiding the sun. It took me almost a year on the S/W protocol before I could though. My poor eyes would turn red, burn and eyes & nose water and my other symptoms would flare up. High BP, light headed, heart arrhythemia, headache, achy, brain fog, sleep disorder, neuropathy, low grade fever, chills, etc.

    Quite honestly Victoria, if I knew I had Lyme or any of the other tick borne diseases I would find the best LLMD in my area and get the full combo antibiotic treatment for it. In my opinion, the MP is not a proven treatment for it and the longer you allow tick disease to spread in your body the worse it is to get rid of it. Plus the more damage it does, Not to scare you but some of which can be permanent. I understand that at times life gets in the way of treatment. But lapses in antibiotic treatment for tick disease only makes it more difficult & more resistant the experts say. But you probably know all this so am sorry if I am rubbing it in. I really don't want to be heavy handed. You know, not who I am at all. I am just so concerned for you. You and your son deserve the best you can get. I am afraid the MP may not be a help at all for you. Both Cpn and tick disease are not stopped by those subclinical doses of antibiotics according to the micro biologists actually trained in the medical field. In fact I heard that Stratton said it sets up perfect conditions like a factory for Cpn to grow. I don't doubt it is why I got so sick while on the MP and then worse when I stopped antibiotics. My nightmare!

    If I don't get completely well on the S/W protocol I am going to follow up with seeking a LLMD to find out if any other infections are hidden in me. I had high titers for Cpn but I did not test for the tick diseases yet. I wasn't well enough to travel until now and it will take a day trip to get to the LLMD. So that will be my next move if need be. DH has been resistant about going in for testing via a LLMD cause he feels fine. But that strange ring on his arm under the skin (although faded) was a tinge darker we noted last weekend.

    On another subject. After reading many research papers on the good effects vitamin D has on the immune system I no longer believe it is a bad thing for most people. Of course I know about the Sarcies and the calcium problem from it. They really should avoid it. But most other people need it for their immune system to function properly and it is proven by all the data coming out now from research. I now belief the reason I had such trouble taking the large doses of vit D my naturopath RX'd back in spring 2004 before I went on MP was that very thing. It charged up my immune system to fight the infection so my symptoms increased just like when I went out in the sun. Secondary porphyria induced by Cpn is a very painful experience. I was hospitalized in 2002 with heart pain (pericarditis)from it when this nightmare began. It was after I had been out in the hot sun that I got so sick. It is a big part of the reason I thought the MP was the answer. So I say, please be aware it isn't for everyone.

    As I said I am finally having big improvements. But of course, now I have more of a wait and see attitude cause there may be more to my story.<wink> Seems we all are a big complex puzzle to work out. But add to that the puzzle keeps changing. Yep. One size does not fit all. That is why we all need to be proactive in our own health situations. That is why I write here. Maybe someone can be helped by something I have experienced or something I say may trigger an idea. God knows I am rooting for every single person here to find the answer for them to get well. Much gratitude to you Victoria for inspiring me to come here again. It boggles the mind to see so many new victims of these life sucking illnesses. Glad we all found this place of great support.

    May blessings and goodness follow you all the days of your life.

    Be careful what you choose Victoria. Make sure you get the right stuff to really make a big difference. <wink> [This Message was Edited on 07/13/2009]
  6. Mikie

    Mikie Moderator

    I have to go but it's always good to see old timers. I'll come back to read the thread later, even though it wasn't addressed to me. I like to keep up with our long-time members. I do keep everyone here in my prayers.

    Love, Mikie
  7. victoria

    victoria New Member

    Well actually it was because of my good response to Phase 1 of the MP that clued me in that my son had Lyme & Co. Before that I had no idea that I had lyme, and as I said, hadn't really known anything at all about it.

    After going thru 7-8th grades with a lot of fatigue and a lot of colds, my son started having neuro symptoms that were hard to differentiate from 'adolescence'. It got to the point he had to drop out of 2 whole semesters of HS and only part-time the other 2, then dropped out as it was hopeless and did his GED as he could. At that point he had all the classic signs of CF and developing FM.... he was 16, his pulse 45-48, he was losing weight while sleeping 16 hours/day, neuroasthenia in all limbs, migrating pain throughout his body, etc., etc.

    We took him to our internist, who ran all kinds of 'regular tests', and some not so regular like for hemochromatosis (my DH's mother had it) - it can cause all the same symptoms as CF/FM/ME. All were negative. The doctor at least was honest and said that yes, something was wrong, but he didn't know what or even where to refer him. I thin I said this somewhere else, but I'll say it again; I think if he'd been female he'd have been dx'd with CF/FM.

    Anyway, I had been on the MP at this point for several months as my D1,25 was high and the okay of 2 doctors... plus I hadn't stopped reading. Also by then there finally was some publicity about the overlap for many between the CF/FM dx and Lyme & co-infections.

    Given that his symptoms of fatigue and brain fog at least were so close to mine and those of lyme anyway, and the fact he grew up on 40 acres in GA, I DID take him to the nearest and one of the best LLMDs, Dr. Jemsek. (I can say his name as he's been in the news a LOT, in fact has an interview in the current newsletter). My son tested positive 2X within 6 months according to the CDC tracking requirements.

    So he used abx, flagyl, etc. for 3.5 years. It did resolve most of his pain most of the time. What has not resolved for him is the neuro problems.

    Our experiences with herxing were the same. I have come to believe that with these types of stealth pathogens, includig CPn and all those that are viral, bacterial, or protozoan, that we don't get rid of them, just keep them in submission.

    I know I could not take the amount of abx he did and for as long as he did, even tho he chose to take them orally and not do IVs; I become allergic pretty quickly to most regular doses of things. I think that's why the MP has done a lot for me and hopefully will continue to do so. If not, I'll try something else. I'm always searching for both my son and me. Who knew we'd end up with the same, yet it makes sense since we're exposed to the same things.

    I am so envious of, while happy for, those who find total help from one protocol, as I believe they are in the minority when it comes to treating any of these stealth pathogens. As you know.

    It's hard to be tested for most of these things with blood tests; IGenex has stated their test for Lyme anyway is 50-70% reliable; testing for the other 'bugs' of any kind is way less reliable. My son was not positive on anything else, but it became apparent he had babesiosis (he still breaks out in head sweats for no apparent reason) plus bartonella. Likely there are other things, as...

    He has had to also treat candida and hypoglycemia; pau d'arco produced someinteresting herx-like reactions. I used to use it for candida but didn't know until he told me that it had been shown to have bacteriacidal (sp) effects. Anyway, at this point he is a health nut at 21yo. For all his hard work and discipline, I feel very sad that his neuro problems have not resolved, which mainly led him to be disabled; and his physical problems still crop up occasionally as well.

    Dr. J didn't have problems with him taking this much time off, he was also disappointed he couldn't get him 100% functioning. He has responded to the MMS protocol, and has tried Rifing - both produced herxes which says something.

    Spirochetes (Lyme, Rocky Mtn Spotted Fever, syphilis) are considered by some researchers to really be in a different class than bacteria, even tho there are a few abx that work on it. My daughter had Rocky Mtn when she was 9, was in ICU for 10 days. Sigh, I've had to learn way more than I ever wanted to know.

    OK, I sort of rambled, hope I didn't get repetitive and was fairly clear about progression of events.... but while I agree the first thing to try is abx if one's fairly sure one has or could have lyme, abx sadly do not always resolve the illnesses due to lyme's and others' complexities.

    TTYL-thanks for coming back...

  8. CelticLadee

    CelticLadee New Member

    Hey you! I was actually hoping you would pop in. I looked around but didn't see your name on any posts. So glad you are still here. I would like to hear an update from you. If you have one written somewhere... well then... just lead the way. <wink> Hope things are going good. Are you still doing the tranfer factors? I think that was the last I remember about your treatment. You were working I believe so hopefully you are able to keep up with that?

    I have been reading Gupta's chat transcript today. I have had his DVD's so started his program a few months back but it was after the S/W protocol started making big changes for me. Nevertheless, it was amazing how helpful the Gupta program is. I was feeling so good I forgot to keep doing it. LOL I need to get back into the groove with it. I admit to not being disciplined at times in small ways. Guess it is my only affordable rebellion. <wink>

    Well, I know I cannot live on these antibiotics, etc. for the whole rest of my life. From my experience with it I believe Ashok is on to something. I need to get my amygdala retrained so it can send the correct signals to my other systems so they run right. Then my immune system will work correctly hopefully. Have you tried it yourself yet?

    Look forward to hearing from you. CL

  9. CelticLadee

    CelticLadee New Member

    and also that of your son. It is incredible to read all you have learned and both been through. It sounds like you have had the advise of a very top qualified LLMD along the way. Even so they don't have all the answers unfortunately. Not that they don't try bless their hearts!

    These bugs & spiro's are like the most evil tiny demons on earth invading our bodies. Yes, I agree they are really in different classes but they have in common a trail of devastated victims trying understand how to get their lives back. It is especially heart wrenching for me when I read stories like that of your courageous son. It is a crime that his young life has been so distorted and altered from it all. We have two healthy grown sons so I likely feel it more strongly because of it.

    I hope and pray you can find a way to treat his neuro symptoms. They are so all encompassing. Mine have really been relieved by the Tinidazole more than anything. I have read that Rifampin can help with the brain infection in bartonella but must not be stopped and started or can cause resistance. I imagine you have looked into this already. It appears you have had a full education on such things. Glad to hear the MP works for you. Keep an open mind and experiment. Individually I believe it is the only way we have a chance to get well. What works for one may not for another. Keep fighting ... never give up!

    Praying for His greatest blessing upon you and your family. CL

  10. victoria

    victoria New Member

    you wrote: "What works for one may not for another."

    That's my mantra and why I keep reading and posting.

    One thing you might want to try is cholestyramine. My son felt it helped when he did it last fall even tho he 'passed' the VCS test. It's weird how symptoms show up - both my son and I got acceptable scores, my husband had a low score. It's just that he doesn't have any symptoms that stop him, he can run rings around us even tho he's over 60. I think Shoemaker said somewhere that some people really don't want to go off it because it does make them feel like they are clearer-headed, and doesn't seem to have any ill-tolerated side effects for many.

    We've considered the amygdala retraining, it sounds interesting. Keep us posted if you do it and how you do... btw, we are allowed now to post links if it's to non-competing places.

    Many doctors of all types feel that we have to pulse meds prophylactically to keep the bugs at bay/in submission.

    One of these days I hope some researchers are able to cut thru the politics and money side of everything and gets a 'whole picture'.

    all the best,

    [This Message was Edited on 07/13/2009]
  11. CelticLadee

    CelticLadee New Member

    Interesting that you shared about the VCS test Shoemaker has at his website. I have done it a couple times. My right eye showed neuro toxins but my left eye was ok. Most of my inflammation is in the right side of my head/brain so it coincides and makes perfect sense to me. It will be interesting to do the test again after I am a bit further along in my treatment.

    Several months ago some folks at the Cpn board suggested I try cholestraymine for my porphyria. Some had great results keeping symptoms down with it. I was only able to take a few packets when my stomach began having horrid pains. It took several weeks to get it back to normal. So I am a bit resistant to trying it again. Felt like it stripped all the protective elements away and left it raw & burning & cramping. Not good. But it did clear my head which was great for a short time then later clearer after Tini. I don't know if stomach trouble would occur if I repeated the experiment. I have a whole box of packets of it so either need to use it or give it to someone to use. It doesn't expire until 2011. Do you know of anyone that has had that stomach trouble with it?

    My amygdala retraining DVD's don't work on USA DVD player so I have to use my DH laptop. I used it a couple of months and it was helping me so I think it will be part of my healing process. I just need to get back into the habit of doing it each day again as I seemed to have slowly stopped along the way as I felt so great. I was spending so much time in the greenhouse and gardens I lost the discipline as it takes so much time when you are learning it.

    I have a big family party out of town this Sat to attend so I am planning to start up the retraining again tomorrow morning. I know it will help assure I am well enough to deal with all the excitement, stress, etc. of the trip & celebration. Actually this will be my first big social event since I got sick. I have only been well enough to attend small family gatherings all these years. My younger sister rented a big banquet room in a lively Irish restaurant for her DH 50th (surprise) Bday party. It is really going to be fun with live music. I am going to help her decorate and all while my DH keeps her DH away & clueless. Hee hee. So this is like my outing. My family is amazed I am going to be there. It requires I put in a 16-17 hour day so it will be interesting to see how I do. No way would I even think of trying this before the W/S protocol worked wonders. I plan on resting all day after it though since I am not 100% so know it will take a toll of some type to do it. But I know I can! How sweet is that after all these years!

    Well, I hope between the W/S protocol and the Amygdala retraining I can find good health and keep it until I die of old age. You never know what else will go wrong in life so I don't dwell on it. Don't expect much from doctors. I just keep the faith and do what I can for myself. Learn to make the best of each day whatever it brings. I hope someday you and your son do try the A. retraining. It may surprise you. CL
  12. anj211

    anj211 New Member

    hi i read your post i have cfs and fairly knew to all this but this is a good place to come a lot of good people here who give good info i was really taken by your name and wondered how you chose the name very unusual and a good name i like it.
  13. CelticLadee

    CelticLadee New Member

    I am sorry to hear you have the unfortunate need to find a place like this. But having said that, I am so glad you found it. It is the best source for support on the internet to get all the basics down and learn from others. Plus the have a great supplement store here with automatic delivery if you sign up for it. Make a habit to spend time reading research, news & articles (see above tab) It really helped me when I was beginning this journey. When were you diagnosed? Are you satisfied with your doctor and treatment?

    As far as my name goes ... I am from the Celtic descent. When I was diagnosed my doctor had asked me if I was and stated a study showing those with this ancestory tended to have a higher percentage of immune disorder diseases such as ME/CFS/MS, etc. The rest is a combo of reminding me to always be a "lady" (with this disease it is good to reflect on that) Also my name is Dee. Thank you for your nice compliment. CL
  14. anj211

    anj211 New Member

    I was just diagnosed in oct after going back and forward for 3 or 4 yrs before he eventually said i had cfs i did try a knew docs surgery but they turned out worse so i eventually went back to the original docs but i found when i went back they were a lot more prepared to look into it and eventually he diagnosed cfs so over all my docs were a lot better when i came back to them. thankyou for getting back to me.
  15. Mikie

    Mikie Moderator

    I still haven't had time to read all these posts but did catch your post to me. I was pulsing the TF's for a while but when I ran out of them, they could not be found anywhere. I guess they are available again. I've been doing OK, working and redoing my bathrooms in the condo. I don't overdo it and rest when I need to. I started the methylation protocol and believe it was helping. I need to get back to it.

    My blood pressure was a bit elevated and my doc and I were trying to find a med I can tolerate, so I stopped the MP for a bit. I still haven't found a BP med I can tolerated. I think I'll just ask him for an Rx for the diuretic to see if that, by itself, will bring the BP down. It's not a dangerous situation, just moderately high. In the meantime, in Feb. I got bronchitis. The cough lasted forever and now, it's allergies. Oy! It's always something!

    Good to talk to you. I hang out more over on the Chit Chat Board these days than I do here. I simply don't have the time to do much more here than scan. I've been here so long that much of what is discussed has been discussed before. If I see something now and then, I chirp in.

    Hugs and prayers to you.

    Love, Mikie
  16. CelticLadee

    CelticLadee New Member

    Good to know you are doing OK. Seems last time we talked you were painting inside your home. We always have projects going on too. Refinishing the kitchen cupboards now plus new hardware. Looks so beautiful I wonder what took us so long. LOL Actually until I got better I could not tolerate the fumes. Amazing how things have changed!

    I have heard some good reports about the methylation protocol but haven't looked into it for myself yet. Some folks at the Cpn website are into it along with other treatments besides. Seems we all have one infection or more going on. I did have such hope the Marshall Protocol was going to be the answer for me so by now I would be totally well again. I was so diligent and disciplined for 3.5 years and only got worse in the end. Guess I was lucky I didn't get cancer from the lack of vitamin D all that time. Just glad I got out when I did. So much better now and keeping my fingers crossed that it lasts.

    Hmmmm. Knowing you I suppose you have also tried diet and the various supplements that help with high BP. I tend to have moderate high BP when the secondary porphyria I have increases. Even while I was taking high doses of Benicar which does help with inflammation for me. Some folks get a herx response from it though. Maybe the BP meds you took had that affect on you too? Well, Mikie, you just have to experiment and try the diuretic I guess. Hope you find it is the answer so you can feel better soon.

    Gupta's program is very interesting in that perhaps it could stop us from this continual battle if it works to retrain our amygdala which would then send correct pathways to the other systems in our body. Maybe our immune systems could finally do the job right? I think it is worth my effort. I have DVD's & what little I have done with it has helped me feel good.

    I have never used the chat rooms. I'll have to swing in sometime to see what's up. Is Tansy around here anymore? So far I haven't found her posts yet. Better get to bed now. Was good to talk to you. Hugs & prayers for you too. CL
  17. Mikie

    Mikie Moderator

    I hope this treatment works well for you. I think it has been a whole bunch of things which has helped me heal to where I am now. I can now tolerate paint fumes too where they would have bothered me years ago. As we heal, a lot of our old symptoms get better.

    I haven't seen Tansy post in ages. I hope she is doing well.

    Got to go rest. I had to get up at 5:00 to open the store today and I'm tired. I overdid it yesterday.

    Take care, my friend. Hugs and prayers.

    Love, Mikie
  18. spacee

    spacee Member

    Sorry about saying "Hi" and "dropping" you! Thrilled that you can go 7 hours without stopping.

    Victoria and Mickie and you and so many others have just kept on, keeping on trying to get over this h*ll. I am proud of us!

    I agree that I think that retraining of the brain might be on to something.

    Right now we are in the throes of getting the house ready for one son, wife and 8 month old to live here so I don't get to the board except right before bedtime.

    Tomorrow is my doc appt. I am so hoping it goes well with the new protocol. He got to the point he refused to do the Marshall for me but I think since the autoimmune has cropped up, it will sway him for the Road Back...which is a form of the Marshall if you read that you should take OTC's to reduce inflammation, etc.

    Gotta a note to read up on what you friends are doing! And seeing what I can try. I am thankful that I can still exercise about a hour 3-4 times a week. Would be much worse without that.

    Hugs to you all,


  19. spacee

    spacee Member

    I got a chance to read the S/W protocol. Gee, I am just at the beginning of it with the doxy.
    Printed off the supplements they recommend. I think as things go along, my doc will work with this protocol!

    You are living proof that someone can get much, much better from this! You are the first person I have heard of this protocol from. Word needs to get out!

    Love to you and so happy you are so well.

    Another reason I am so happy to find out about this is we have so much autoimmune on both sides. DH sister is so sick with lupus and RA. And now my son's mother in law called and her sister has so much autoimmune just discovered. My kids and their kids need to know that there is help for these things. Thanks so much for this.

  20. victoria

    victoria New Member

    Wow, you are going to have a housefull... that is great you can still exercise, it's pretty hit or miss for me. No I'm not familiar with RoadBack protocol... tho I'd likely have problems taking antiinflammatories depending on what they are (typical OTC ones kick up my duodenal ulcer that is not h. pylori) - but I'll have to look at it. I've also heard of SueJay's now modified MP protocol and may also try that. I have a whole list of things to try.... continually adding to it and re-adjusting as things happen or change. Also some are relatively inexpensive to try, so no reason to not in those cases.

    It was discussed on another thread about how facing reality isn't pessimism... I agree, but I think it depends on how it's expressed. IMHO, I think one can still be looking at and trying different things realizing that many (most?) things aren't going to help or help much, yet still be hopeful. I don't think that is contradictory?

    Maybe I'm an eternal optimist, tho I would call myself more of a cynical optimist. (oxymoron?) So many things have seemed to help for a while, then reverse. At least 80-90% of the gains I have had with the mp have not, so even if I had to stop it tomorrow, it would still be my opinion it was good that I did it... if only because it's been the only thing that has so far given me 18 months (and counting) relief from 24/7 bad sinusitis.

    I realize the chances of full recovery at this point are likely slim, but any improvement is good and adds to my quality of life. I and many of us could just give up but- I still do feel I have a lot to live for, look forward to, and enjoy. I don't think that doesn't mean I have not accepted the reality of it.

    So-- I agree - here's to all of us who keep an open mind and keep on keeping on!

    all the best,