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Diet additions that might help AND WEI Institute cure claim – really?
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Has anybody tried WEI products since the last above post?
Denny/Richard, how are you guys doing the last few months on the WEI products? They are very expensive and make many claims about being able to reverse lung damage so am skeptical but want to keep an open mind.
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Hi Leontis,
Nice to hear from you, how have you been doing? I have to admit, I haven’t tried WEI yet either due to the cost, and I think the “verdict” is still uncertain as to their claims and how they say they can help those of us with IPF. That said, there have been a number of people including Denny and Steve who mentioned that they think Wei is helping them. It is hard to be skeptical when folks have a positive experience. Hopefully they see your note and let you know how it has worked for them, both different experiences but seemingly positive.
Take care,
Charlene.-
@let666
Hey Leontis – I was not interested in Wei so much because the claims are too vague and the cost. But I knew when I returned to the Philippines, there would be no more laser treatments for a long time so I decided to try Wei. I started 1 week before returning here in mid-May. Some had said maybe 2 months would be good but after 2 months I was not experiencing any changes I could note. So when I contacted my account rep, she then told me for the first time it could be 2 – 6 months for significant results. I was not prepared for this but I gulped and plunged in for month 3 and then month 4. In the middle of month 3, I really started having more energy, much-reduced cough, more stamina. That decided me on month 4 and I could have (should have) stopped mid-month 4 and saved the rest for the “maintenance dose needed maybe 2x per year.
So I have not been on any O2 for 4 months and get up at 4 AM daily to fix my wife and me hot calamansi juice, start laundry, start rice and potatoes, fix coffee and enjoy the quiet for a while before my sweetheart has to get up.
O2 readings are steady in the mid to high 90’s, heart rate is reduced (could be from other things I do) and Wei may help PAH. These are subjective but I will continue Wei when the need arises. Had no problem shipping over here. I call Wei a success after my original skepticism BUT each of us will have different results because ILD and IPF come in many avenues. – Steve
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Looking over the 3 Wei products for tespiratory problems do not see why would need more than the one that reduces scar tissue and fibrosis. Seems like a waste of money to use other 2. However, could be wrong and that is just my initial reaction.
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@let666
If you are referring to Soup A, Soup B, and L/C balancer – they come as a package together. Also, you may need 2-6 months as I did 4 months and will do a maintenance round probably at the end of this year… – Steve
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If you mean they will not sell them seperately that makes me very suspicious, especially since they are charging what seems to me very excessive prices.
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@let666
They seem to work better as a package and I don’t know if they sell separately but why would you only take part of a medicine? Yes, they are pricey and I definitely would have balked if I had known I need up to 6 months, however, they helped significantly.
So I took them for 4 months instead of 2 I thought would work. Mostly I noticed very little difference until month 3 and now post pills 3 weeks, I have stayed the same. – No O2 for 4 months but I do take a number of different supplements and I think that each person’s response may be slightly different since there are a number of different pathways to this dreaded disease.
Ideally, I will do pills and laser when I get back to the USA as Andy is/was doing. Hope that helps. – Steve
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@rjshank
Hi Richard. Hope you are doing well. I’m a newbie here and just started looking into WEI. On Feb 1 2019 you indicated that you just started taking their products. I haven’t found any subsequent comments from you regarding how you are doing with it and what you think. If you have, could you point me in the right direction?
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Dennis,
In your Dec 20 post you said your only bad number was CO2 at 79%.
Think this means you are not expelling enough CO2 when you breathe out. Has the CO2 number changed since you have been taking the Wei products? Believe to test your CO2 level you need to do an arterial gas test. Do think it is part of a PFT test.
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Leontis, my co2 level was 59% at diagnosis. It has improved to 69%, 72% twice and 89% in my last lung function test in June after the WEI lab herbs.
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Denny,
I have a feeling you are not referring to co2 as this is not measured in a pulmonary function test and needs a special blood test to be measured. Are you referring to your oxygen saturation level, which is known as sp02 and is nmeasured by a liitle device you put in your finger?
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No, those are my percentages on my dlco on my function test. 59% at diagnosis and 89% in June.
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Leontis, I am not exchanging gases and my carbon dioxide is not being expelled as it should. My Oxygen level ranges from 95 to 97 on my finger.
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@deliassen
Deeny – how do you know co2 is not expelling properly? Also, do you have PAH (is your heart rate high and P, Artery high BP)? – steve – Post Wei 8 weeks and doing pretty good…
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An arterial gas test is really the only way you can find out if expelling co2 properly.
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Denny,
Do you think the DLOC improvement could be due to anything else except the Wei products? For example if you stated playing hockey again you probably improved your lung function quite a bit just from that. I am also a hockey player and notice a big difference in lung function when I play regulartly. It is like doing interval training.
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No, it was absolutely the WEI herbs. I was close to quitting hockey after 50 years because my breathing was decreasing rapidly. I took the herbs for 2 months and my breathing was greatly increased!! everyone on this forum that has taken Wei herbs has improved, in fact everyone from the west has improved.
Denny
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oops!! where did my post go about WEI???
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I also believe herbs can make a difference in your breathing ability. I called Wei Institute right after I was diagnosed and was about to try their product. But I could not justify the cost ($3000 for 3 month supply). I started running and taking EGCG extract, green tea and other herbs such as ginger, turmeric and cinnamon. My recent breathing test showed improvement over the last one I took 5 months ago. The only area which showed a slight decrease is diffusion. My doctor feels that is not a reliable indicator. I also have little or no cough. I plan to start playing tennis again as the weather is warming up here in the south. Can anyone explain what diffusion means in terms of lung functions?
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I just started the Wei and breaking open the capsules takes time. I am at a Hail Mary point and heard good feedback on line. I will spend about $10 grand on it. I will let you know how it goes. I work hard remotely for a reason. Good Health insurance and the sheckles for medical items like this and other and a 1000 a month German shepherd to keep me company. Putting off transplant as long as possible. China is good and bad right. LoL.
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@6yearvet Ben – is the Wei helping you and why do you take the capsules apart? Thanks – Steve
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Ben, good luck! Keep us all in the loop. I am considering more research on this Wei Labs stuff after CT scan and breathing test this month.
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Hi, I’m marylou and I have had IPF for 3 years or diagnosed. I too saw the Wei article and got there soup recipe. Then decided to find a herbalist locally because the Wei location was 350 miles away. I started on the basic soup then my herbalist started making little changes to fit me. This was about 1 1/2 year ago. About a month ago I started only drinking 1/2 the dose a day. Then a week ago I got this deep cough with lots of secretions. I called my new pulmonary guy and he says I have chronic COPD. He is new. He sent the diagnosis on email. Well I know better. I then increased my herbs to the full dose and took another herb that really stops my cough. After two days of my increasing my herbs I’m feeling better and my cough is down to the normal chronic cough. I may be unusual but I like to see the herbs so I boil my preparations. This is just what happened to me. The herbs haven’t cured me but they make my life better.
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@marylouplay
Hi Mary Lou,
That’s really interesting you found a way to get similar herbs. I am about ready to order Wei again if I can cut a dear but really interested in your source and costs if you are willing to share.
Look into a class 4 laser there is a forum that may help you. I take a bunch of supplements that help as I round the 5 year corner of ILD/IPF in October, PAH is a growing problem.
Thanks for sharing! – Steve
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I buy my herbs at my local herbalist and it’s about $400 a month.
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I was diagnosed with IPF in the summer of 2019. I was 77 at the time but am older now (this aging thing is so relentless!).
I was coughing often and coughing up phlegm. Regular breathing was a growl. My wife used to pat me on the back in hopes of loosening up the chest. Sometimes I thought I might choke from the phlegm when it didn’t seem to come up far ennough.
I started colloidal silver (truly colloidal) in March of 2020. I started colloidal because my pulmonologist said many of his patients reported doing much better on colloidal. “I can’t recommend it, but I can tell you what they report.” I interpreted that to mean, “You can’t sue me if things go wrong.” I certainly couldn’t afford medications as my insurance, although pretty good addition to medicare, wouldn’t cover it.
My two boys flew down to see me in June in order to see good ol’ dad one last time. I had to apologize to them, because by the time June rolled around, I was getting better and better. By September, I had no coughing, no phlegm, no breathing problems. My tests haven’t changed in two years.
I use a nebulizer and only inhale 5 ml (about a teaspon) in about 15 minutes. I also use the Ultrabreathe respiratory trainer to strengthen the lungs, although I don’t know if that helps. Figured it couldn’t hurt and IPF doesn’t afford much good news.
My athritis doctor put me on actemra in October of 2019. Actemra might have helped me as research indicates it stops the progression of IPF. It’s difficult to decide what causes what when you have more than one indpendent variable. I personally think the colloidal did the trick, but the two could be working together.
I’m going to write up my story after another year with my test results and my ‘technique.’ The person who evaluated my lung CT scan gave me a mild to moderate level of IPF and gave me a less than happy prediction for years remaining (two). That is based on large averages, so may not have been accurate as I should be dead this summer (2021).
Dave
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I am not sure but it might be helping me. I improved but I am not sure if it is the prednisone bursts, the Wei, the disease cycle, the oxygen adjustments, the Tyvaso or the Ofev. I am not going to chance stopping the Wei in case that is a contributor to the upturn. I was breaking the capsules because I didn’t want to ingest all of that plastic. Also because 19 pills is a lot to swallow on top of the many meds I already take. Then I found out that they were vegetable capsules and not plastic so I didn’t mind putting them in to my system. Also the pile of marijuana hemp looking inerts in a drink was not very tasty. So I got used to the capsules and routine. That’s my story with Wei. Throw everything but the kitchen sink at my disease. Stem Cells included drove a long way but were a no go.
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@6yearvet
Ben – thanks for responding. Hope Wei works for you. There are other tea(s) you might investigate such as Hibiscus and others. – Steve
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Hello folks,
I have been taking the Wei regimen now for the second time.
First time was almost a year ago
and used it for 3 months, but didn’t see any
improvements so I stop. I am again using it and this is my 3rd month
and give it another try. If after 5 months I see no improvement, I will discontinue it.
Allan Byron
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@abyron888
Hey Allan,
Nice to hear from you. I am considering going into my third set soon and will do 3.5 months. Let me/us know how you are doing in another month or so with the Wei.
Thanks,
Steve
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