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  • #362387
    Maz
    Keymaster

    @cavalier wrote:

    in the walk in type many folks sit with a towel around them & they still sweat around that area that is covered.

    I had trouble sweating at 1st in either unit I did but not as much as I do now, that is better since the IV therapy so it really is a heavier sweat now that is one thing I noticed.

    Best – Jill SD & now Saracoidosis to add to the list

    Jill, I guess you’re right that folk would have to wrap themselves in a towel in the cabin-style FIR saunas in the public ones…I secrete myself down in my basement all alone with a good book and sweat in the nude and just sit on a towel. Sorry for that nasty visual. 😯 πŸ˜† 😳

    How cool that you’re sweating more effectively since you started your IVs! Chalk up another nice benefit to them!

    So sorry to also hear about your sarcoidosis dx. Another disease to research and learn about, huh? πŸ™

    #362388
    cavalier
    Participant

    Maz – Yes in that regard the booth type saunas are have the advantage of sitting on a towel over laying on one – however I really enjoy laying down so in a full size sauan this is still my preference, probably as I never seem to get a chance to do so enuf.
    I just felt for the difference in the cost I could buy myself many blankets if needed over the years or use the funds I saved towards IV’ therapy which is what I did. πŸ˜€
    Well i got the rest of my symptoms now figured out – at least i know what it is called & why, but hit me for a curve ball as you really don’t want to have to deal with more than one disease, especially with them both can make internal scar tissue – especially the lungs, so been a bit of a challenge but not like i am the only one unfortunately.
    best –
    Jill

    #362389
    Maz
    Keymaster

    @cavalier wrote:

    Yes in that regard the booth type saunas are have the advantage of sitting on a towel over laying on one – however I really enjoy laying down so in a full size sauan this is still my preference, probably as I never seem to get a chance to do so enuf. I just felt for the difference in the cost I could buy myself many blankets if needed over the years or use the funds I saved towards IV’ therapy which is what I did. πŸ˜€

    Well i got the rest of my symptoms now figured out – at least i know what it is called & why, but hit me for a curve ball as you really don’t want to have to deal with more than one disease, especially with them both can make internal scar tissue – especially the lungs, so been a bit of a challenge but not like i am the only one unfortunately.

    Hi Jill,

    I’m glad I asked the question, because these kinds of decisions are so important to those trying to get well and wading through all the choices that need to be made on how to spend their money in the most effective ways. What is important to you may well be important to many others, too, so thank you for sharing why the blanket-style FIR sauna has been a good choice for you. πŸ™‚

    I understand what you’re saying that while it’s crushing to get a new, additional diagnosis, at least knowing what you’re dealing with can lead you on to refine your researches and to take a more focused approach to treatment. Sort of a “better the devil you know” type of situation. Where have your researches led you thus far, Jill?

    #362390
    cavalier
    Participant

    Both diseases stem from what I have read a bacterial infection the immune gets dysregulated from Th17 which is part of the inflammatory situation – eating proline rich foods can add to the immune dysregulation. Both the immune & AP need to be done to bring things back into balance again.

    I posted some links under a recent nutrition section.

    One has to consider both the right support for the immune & lowering infection in my opinion.

    Avoiding high proline foods is important & looking for foods that are low in proline & also natural herbs that help to block Th17 like Berbine AKA Barberrry which does this along with being a natural antibacterial & antiinflammatory combined with AP.
    Best –
    Jill

    #362391
    Krys
    Participant

    @Maz wrote:

    …. they have stenosis of the major veins coming from the brain and also in the chest (possibly in other parts of the body, too). The inability of blood to return to the heart and lungs leaves iron-rich blood pooling in the brain. …. is what leads to neurological inflammation and, thus, brain and nerve sclerosis (scarring).
    ……hard time tolerating heat …..

    Dr.K., the well-known LLMD,
    “…has seen CCSVI in 100% of his tested MS patients, autism patients, Parkinson’s patients, ALS patients, and Lyme patients.”[/i]

    Question is…what is causing those stenosed veins in the first place? Well, it’s more than likely inflammation and where there is inflammation there is usually a microbial culprit….

    Thank you, Maz! You are totally amazing in your genius to focus on what is essential to someone’s particular challenge. 100% of Lyme patients? Yes, it’s mainly the veins in the neck, chest and middle torso that feel very narrow and hardened. Inflammation is absolutely related to it. Any wrong food (which is almost all food in my case) causes a cascade of inflammatory responses all over the body and that’s when the veins feel almost too narrow for the blood to get pushed through.
    I was to restart abx 2 months ago, but I’ve kept postponing because of major digestive/gut issues.

    Patients will reject all treatments that affect the issue that requires treating. Patients will not guide themselves to health when the microbes have taken over.


    There may be more truth in the above statement that I am willing to admit! I am familiar with the link you’ve supplied, but I will certainly benefit from repeated studying of it! Thanks a lot. I really needed to read it again!
    I’ll be seeing my LLMD in May. So far my adjunct treatments have helped, but abx are still needed. Last week I took Diflucan for 1 week and heart palpitations that did not respond to anything, all disappeared within 1 day! Main herx was in the lungs and some joints. Pretty strange….
    Back to basic treatment again! Somehow you’ve used the right words to encourage me to look beyond fear!
    I would really like to be able to use FIR sauna!
    Warm wishes, Krys

    #362392
    A Friend
    Participant

    @Krys wrote:

    @Maz wrote:

    …. they have stenosis of the major veins coming from the brain and also in the chest (possibly in other parts of the body, too). The inability of blood to return to the heart and lungs leaves iron-rich blood pooling in the brain. …. is what leads to neurological inflammation and, thus, brain and nerve sclerosis (scarring).
    ……hard time tolerating heat …..

    Dr.K., the well-known LLMD,
    “…has seen CCSVI in 100% of his tested MS patients, autism patients, Parkinson’s patients, ALS patients, and Lyme patients.”[/i]

    Question is…what is causing those stenosed veins in the first place? Well, it’s more than likely inflammation and where there is inflammation there is usually a microbial culprit….

    Thank you, Maz! You are totally amazing in your genius to focus on what is essential to someone’s particular challenge. 100% of Lyme patients? Yes, it’s mainly the veins in the neck, chest and middle torso that feel very narrow and hardened. Inflammation is absolutely related to it. Any wrong food (which is almost all food in my case) causes a cascade of inflammatory responses all over the body and that’s when the veins feel almost too narrow for the blood to get pushed through.
    I was to restart abx 2 months ago, but I’ve kept postponing because of major digestive/gut issues.

    Patients will reject all treatments that affect the issue that requires treating. Patients will not guide themselves to health when the microbes have taken over.


    There may be more truth in the above statement that I am willing to admit! I am familiar with the link you’ve supplied, but I will certainly benefit from repeated studying of it! Thanks a lot. I really needed to read it again!
    I’ll be seeing my LLMD in May. So far my adjunct treatments have helped, but abx are still needed. Last week I took Diflucan for 1 week and heart palpitations that did not respond to anything, all disappeared within 1 day! Main herx was in the lungs and some joints. Pretty strange….
    Back to basic treatment again! Somehow you’ve used the right words to encourage me to look beyond fear!
    I would really like to be able to use FIR sauna!
    Warm wishes, Krys

    http://www.nutritionreview.org/library/collagen.connection.php
    Especially found interesting, in this paper, the information about collagen types. Thought Krys might find the Type IV Collagen information especially interesting regarding/relating to the eye and artery … and hopefully helpful.

    After constant reading/searching in work of Dr. Pauling and other scientists/physicians, I’m afraid over the years that releases from “vested interests” have tried to minimize and discredit the importance and power of this research for healing. At this time, I perceive the information I’m learning from this research an area vital to all of our diagnoses, plus diagnoses of such as Parkinson’s, ALS, Diabetes, and everything else. It was stunning to me when I realized that we humans long ago lost our ability to make this much needed and very important nutrient.

    After much searching for other copies of the book I have by Dr. Pauling, I finally found it available from the Oregon Institute named after Dr. Linus Pauling, and was the same cost as the one I got from B&N (who sold me the last one left in their central warehouse).

    AF

    #362393
    Krys
    Participant

    @A Friend wrote:

    http://www.nutritionreview.org/library/collagen.connection.php
    Especially found interesting, in this paper, the information about collagen types. Thought Krys might find the Type IV Collagen information especially interesting regarding/relating to the eye and artery … and hopefully helpful.

    …this research an area vital to all of our diagnoses, plus diagnoses of such as Parkinson’s, ALS, Diabetes, and everything else. ..
    AF

    Thank you, A Friend!!!
    I’m very grateful for your bringing Vit.C up. Keep meaning to enlarge on your Vit.C thread, but could not find the time and clarity of mind of to do that yet!
    I’ll read all the links in a couple of days. It’s been very hectic time for me now.
    I’ve found that taking Vit.C has huge impact on my well being. It even lifted up the morose state I started sinking into!
    Magnesium helps, too!
    Too much indecisiveness (Acerola or ascorbic acid, ascorbic acid + salt, Amla/Amalaki, which bioflavonoids, what proportions, etc…) postponed my bigger intake for the whole year. Last few months I’ve been taking 4 grams of non-corn C + 2 grams of Acerola. But upon experimenting with some leftover corn derived ascorbic acid, I don’t see it to be any issue, in spite of big corn allergy. Maybe no corn left there at all? I think I still need more than 4 + 2 grams. I’m sure that titrating to bowel tolerance, as advised by Linus Pauling, will show results much better.
    If I forget and don’t take any (like last couple of days), I feel definitely worse. The veins feel very clogged then.
    I only bought buffered C which isn’t the type to use to bowel tolerance, but in my case (mucous membrane challenges) buffered one seems a better choice for now. So maybe buffered one can be taken 3-4 x day in smaller amounts?

    Incidentally it solves my fear of Minocycline’s effect on collagen. I need to start regrowing it and really can’t afford losing any more. Thanks for the reminder! I can’t wait to read the links but it will have to wait as it’s very late now.
    Most of my Vit.C information comes from Andrew Saul’s “Doctor Yourself. Natural Healing That works.” I think I “discovered” him through your past link. Much of his advice (maybe all?) is based on orthomolecular medicine and thanks to Andrew Saul and your posts, Linus Pauling has become my hero, too!
    I’m happy his book is available again. Thank you for providing the link. It’s such great joy to have access to the work of a great mind that was not only a genius, but deeply cared for the well-being of all of us. Based on what I’ve read in “Doctor Yourself” vit.C in mega doses, titrated to bowel tolerance, can bring about miracles. One has to start doing it though, just reading, even repeated reading, does not do anything at all! So thank you very much for reminding me that there are some excellent and very cheap solutions!!!
    Warm wishes, Krys

    #362394
    cavalier
    Participant

    I just looked at this link – it suggests ingesting Proline & Vit C along with Lysine – while 2 of these are important amino acids – it depends on the condition or disease involved. If you look at Proline & Lysine a excess can contribute to Th1 or Th17 which is a inflammatory action & excess collagen – in a disease state where one is making too much collagen or the immune is in overdrive supplementing with these or eating proline rich foods – of which meats dairy cheeses have in large amounts – basically most veggies are safe & some fruits – anyways one can see where what we eat can contribute to inflammation – but this is mainly for those folks who have a autoimmune that is fed by a High Th1 – SD is one of them and Sarcoidosis – which I have. One can hit the net – Harvard medical has some info out there in relationship to all of this I posted it on here in one of the subjects recently.

    Vitamin C is needed of course in the boyd in collagen diseases – probably prudent to use in moderation for supplementing.

    If one thinks on it any articles say one can help their SD by eliminating meats & dairy so it all makes some sense.
    best – Jill

    #362395
    A Friend
    Participant

    @cavalier wrote:

    I just looked at this link – it suggests ingesting Proline & Vit C along with Lysine – while 2 of these are important amino acids – it depends on the condition or disease involved. If you look at Proline & Lysine a excess can contribute to Th1 or Th17 which is a inflammatory action & excess collagen – in a disease state where one is making too much collagen or the immune is in overdrive supplementing with these or eating proline rich foods – of which meats dairy cheeses have in large amounts – basically most veggies are safe & some fruits – anyways one can see where what we eat can contribute to inflammation – but this is mainly for those folks who have a autoimmune that is fed by a High Th1 – SD is one of them and Sarcoidosis – which I have. One can hit the net – Harvard medical has some info out there in relationship to all of this I posted it on here in one of the subjects recently.

    Vitamin C is needed of course in the boyd in collagen diseases – probably prudent to use in moderation for supplementing.

    If one thinks on it any articles say one can help their SD by eliminating meats & dairy so it all makes some sense.
    best – Jill

    Jill,
    In reading of Dr. Pauling’s books, and articles by him and others, I don’t believe the recommendations were a “one size fits all.” Your post is interesting, and I’d like you to edit it to include a link, or links, with points you’ve posted. This I believe can help us (or me) understand important information better. Thanks, AF

    PS In a further search on this subject, more information relating to Scleroderma and Vitamin C seems to have been found, which I’m pasting in a reply to Krys.

    #362396
    A Friend
    Participant

    @Krys wrote:

    @A Friend wrote:

    http://www.nutritionreview.org/library/collagen.connection.php
    Especially found interesting, in this paper, the information about collagen types. Thought Krys might find the Type IV Collagen information especially interesting regarding/relating to the eye and artery … and hopefully helpful.

    …this research an area vital to all of our diagnoses, plus diagnoses of such as Parkinson’s, ALS, Diabetes, and everything else. ..
    AF

    Thank you, A Friend!!!
    I’m very grateful for your bringing Vit.C up. Keep meaning to enlarge on your Vit.C thread, but could not find the time and clarity of mind of to do that yet!
    I’ll read all the links in a couple of days. It’s been very hectic time for me now.
    I’ve found that taking Vit.C has huge impact on my well being. It even lifted up the morose state I started sinking into!
    Magnesium helps, too!
    Too much indecisiveness (Acerola or ascorbic acid, ascorbic acid + salt, Amla/Amalaki, which bioflavonoids, what proportions, etc…) postponed my bigger intake for the whole year. Last few months I’ve been taking 4 grams of non-corn C + 2 grams of Acerola. But upon experimenting with some leftover corn derived ascorbic acid, I don’t see it to be any issue, in spite of big corn allergy. Maybe no corn left there at all? I think I still need more than 4 + 2 grams. I’m sure that titrating to bowel tolerance, as advised by Linus Pauling, will show results much better.
    If I forget and don’t take any (like last couple of days), I feel definitely worse. The veins feel very clogged then.
    I only bought buffered C which isn’t the type to use to bowel tolerance, but in my case (mucous membrane challenges) buffered one seems a better choice for now. So maybe buffered one can be taken 3-4 x day in smaller amounts?

    Incidentally it solves my fear of Minocycline’s effect on collagen. I need to start regrowing it and really can’t afford losing any more. Thanks for the reminder! I can’t wait to read the links but it will have to wait as it’s very late now.
    Most of my Vit.C information comes from Andrew Saul’s “Doctor Yourself. Natural Healing That works.” I think I “discovered” him through your past link. Much of his advice (maybe all?) is based on orthomolecular medicine and thanks to Andrew Saul and your posts, Linus Pauling has become my hero, too!
    I’m happy his book is available again. Thank you for providing the link. It’s such great joy to have access to the work of a great mind that was not only a genius, but deeply cared for the well-being of all of us. Based on what I’ve read in “Doctor Yourself” vit.C in mega doses, titrated to bowel tolerance, can bring about miracles. One has to start doing it though, just reading, even repeated reading, does not do anything at all! So thank you very much for reminding me that there are some excellent and very cheap solutions!!!
    Warm wishes, Krys

    Krys,
    Just what you needed…lol… more to read! πŸ˜†

    Search words used to find the following were: vitamin c+Linus pauling research+scleroderma

    http://www.vitamincfoundation.org/page2.shtml
    Featured Article: Biochemistry of Lyme Disease: Borrelia burgdorferi Spirochete/Cyst

    #362397
    cavalier
    Participant

    Dear AF – it is links I posted under nutrition & eating section of this forum – am copying them over to here again – this is only the tip of the iceberg though there is tons more on the net – if one searches under Th17 inflammation or Th1 and inflammatory foods etc.
    But this will give you a small start as I said there is tons more –
    Jill
    Getting down finally to the T cell level of understanding the why & how these links were sent to me by the maker of Scler-oeze, with nothing in it for him, but to help. Need to watch out for Proline rich foods for folks who have SD( I didn’t realize how many foods that covers I was reading on the net lists of Proline rich foods – chicken etc. Anyways i thought this 1st link ties in well with this discussion here as well as the 2nd link. Best – Jill

    http://www.med.uio.no/cir/english/resea … index.html

    This 2nd link is short &sweet, says alot of how gluten & diet plays into T cell suppression – leading to various diseases due to immune dysregulation opening the door for bacteria viral infections. Marriage of genetic suspectibility combined with enviro- you gotta love it !
    http://news.harvard.edu/gazette/story/2 … -revealed/

    http://www.examiner.com/autoimmune-dise … -life-back

    #362398
    lynnie_sydney
    Participant

    Hi Jill – just thought I’d let you know that none of these 3 links seem to be working ( although they did in your original post)- all come up as bad links or page not found.

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
    rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
    Diet: no gluten, dairy, sulphites, low salicylates
    Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

    #362399
    cavalier
    Participant

    Indeed Lynnie – many thanks for telling me. I just had to send some info over to a chinese Accupunturist & herbalist – so I had to hit the net again for info – this hopefully will be up for a bit –
    (that is the issue with only posting links they do change over time)

    http://esciencenews.com/articles/2012/02/12/researchers.discover.molecular.secrets.ancient.chinese.herbal.remedy

    http://udelldentallab.wordpress.com/ (the last sentence is especially important, gives evidence to starving prolines which are high in certain foods, which maybe why some other articles mention that if one wants to assist in slowing down SD one needs to avoid meats & other foods)

    Th17 cells play a critical role in host defense against a variety of bacteria and fungi (7), but under pathologic conditions such as autoimmunity, Th17 cells exacerbate inflammation

    #362400
    dixiegirl
    Participant

    Our sauna makes my joints feel better when I’m having a flare. Usually I can trace it to some toxic exposure: cleaning the house, going to the swimming pool (chlorine), doing a parasite cleanse, using fingernail polish (yeah… I know I shouldn’t, but I do!) etc.

    But don’t get a cheap sauna. You want it to be the real FIR sauna, or else you’re going to get expose to more toxins. We put $2000 into ours, but I’ve used it over 100 times. That’s cheaper than going to a spa or something. And, the whole family can benefit. We’ve found we all feel better (esp those of us with muscle pain) after using the sauna. And it makes your skin healthier (it curbs pimples and bumps on the skin). I like the benefits of the real thing.

    #362401
    cavalier
    Participant

    FIR is important – I have that in the FIR blanket. It does help to calm joints for sure.

    I had a few reasons for the choice of a blanket over a booth type but one was something I could take with me the bigger units are not very portable if I travel and we are not sure how long we will be in this house as we want to downsize at some point.
    We thought about only one person using at a time but we felt with our schedules we seldom would use a FIR at the same time.

    FIR without carbon is important as well as glues in the stand up booth materials used etc.

    best – Jill

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