May 8, 2019 at 9:12 am #18980
Greetings forum Members!
I am a 67 y.o. from Athens, Greece and was diagnosed with IPF this past February after having dry coughs followed by breathing difficulty after exercise for about a year or so. For the time being I am taking Serrapeptase and Natokinase plus a series of homeopathic remedies therapy (in my case Sulphur and Medorrhinum which was substituted by Stannum Metall. last week with good results on my coughing bouts) prescribed by my homeopathic MD, certified by the famous George Vithoulkas academy (https://www.vithoulkas.com/). I am also considering K-laser therapy -after reading about it in this forum- but there seem to be no specifically certified K-laser labs in Athens, as yet.
In a couple of weeks I will undergo BAL bronchoscopy by a classic MD pulmonologist who’s insisting to start me on Pirfenidone ASAP. Of course this therapy, besides all the concomitant heavy side effects, would eliminate any benefits derived in the past couple of months from homeopathy. Obviously this leaves me here sitting on a fence…
My question is: has anyone in this forum had any previous experience, knowledge or information on potential benefits from homeopathic therapy in IPF?
Thank You for your precious time,
May 8, 2019 at 9:19 am #18986Charlene MarshallKeymaster
Welcome again to the PF forums and thanks for starting this topic thread!
Sorry to hear of your IPF diagnosis, but glad you found this community. As much as I wish it wasn’t this cruel disease that brings us all together; everyone is so kind and welcoming on this site. Glad you’re here.
I know @steve-dragoo takes both the supplements you’re taking, and he vouches for much success with them too. I’m not sure what his regimen of homeopathic remedies is like, and I unfortunately don’t have any experience to share my thoughts with you either. I’m glad to hear they’re having good results on your cough though, that sounds promising! There are a lot of forum members using the k-laser therapy too, so feel free to ask any questions you may have or be curious about. I’m not trying it myself, but I know many others are and would be happy to share their experience with you.
Goodluck with the upcoming bronch as well. I take Ofev, not Esbriet (Pirfenidone) but feel free to read the following thread on Esbriet if you have questions about starting it: https://pulmonaryfibrosisnews.com/forums/forums/forum/esbriet-pirfenidone/ … given the side effects with both anti-fibrotic medications, I understand your hesitation to starting it. I shared that when I started Ofev…
Thanks again for writing, and I hope someone responds with answers to your question regarding homeopathic remedies!
Take good care and write anytime!
May 9, 2019 at 5:37 am #19016
Thank You for your welcome and kind words. Indeed this forum is a treasure trove of useful info and guidance for PF people.
Regarding homeopathy remedies, I mentioned my particular recipe mix just for information since homeo treatments are based on each individual ‘s psycho-somatic profile and tailor made accordingly. Thank you for the link to the Pirfenidone discussion; my decision regarding use of Esbriet will take into account the results of my BAL bronchoscopy.
May 9, 2019 at 5:56 pm #19053Charlene MarshallKeymaster
So glad you’ve found the forum Mike ( @mikepapa ) — everyone here is so lovely 🙂
That makes sense re: your homeopathic remedy as it is unique just to you. Glad you’ve been in some discussions about Wei as well. Keep us posted if you find anything particularly effective and thanks again for posting about the homeopathic remedies, I see it has sparked some conversation and curiosity which is what the forums are all about.
Warmest regards and thanks again for writing.
May 8, 2019 at 10:26 am #18994
I have intentionally avoided the two western traditional medicines as the side effects outweigh the benefit to me. BUT I know many have good success so I am certainly not suggesting to avoid them.
Regards homeopathic – I have several doctor and nurse friends and also do my best to keep updated with the supplements I take. A close friend used to have a successful orthopedics practice in the USA but he noticed surgery and prescriptions are typically after the problem. Now he tours and talks a lot about this phrase, “pills are for dying people, food is for living people. So I can send you his newsletter info if you want. Currently, he and his family live in Australia for the past 3.5 years.
Ask what you want and I will answer what I can. I know food and supplements like serrapeptase etc. are a great help. So is the k-laser and others here on the PF forums like WEI Laboratories for their herbal remedy that may help cure IPF – emphasis “may” or possibly help IPF… – I may try it because I am moving back to the Philippines soon and have not been able to find a class 4 laser.
May 9, 2019 at 5:54 am #19017
thank you for sharing your homeopathy experience. Still, I haven’t quite understood whether you did initiate some allopathic treatment and then decided to terminate due to side effects or haven’t done any at all. I agree with your friend’s motto and would appreciate his newsletter very much, plus any link to info regarding the WEI Laboratories herbal remedy.
May 9, 2019 at 8:20 am #19020
Mike, I posted to you but because I put in my email address – that post needs approval by the admin. Hopefully, it will post soon for you.
June 19, 2019 at 10:14 pm #19956
May 9, 2019 at 8:51 am #19021DennyParticipant
Michael, I just sent a post to Steve about my experience with Chinese herbs. They helped me a lot and have improved my last 3 lung function tests significantly. I get them from WEI Laboratories. I took 2 months of the herbs back in the summer of 2017 after my diagnosis when my breathing had fallen off a lot. After 2 months of the herbs I was back playing hockey and feeling great which I am doing several times per week now. I have taken a 2 week supply twice since then for maintenance. They were the answer for me. I have IPF and I am 68.
May 9, 2019 at 11:41 am #19031
Thank you vert much for the info, Denny… I found WEI labs web page and I will advise my homeopath to contact them about their herbals, since it’s their policy to sell only to certified MDs.
June 20, 2019 at 9:24 pm #19990
All I did was call them. The rep I spoke to suggested I talk to an outside free doctor consult that they will provide before I start the pills but I declined, however I will call that doctor before I order a maintenance 6 months to a year from now. Wei is very accommodating and shipped my second order to the Philippines with no problem.
I talked to Jane Bro (my rep) at 612 808 8985 in CA USA. Hope that helps you. – Steve
June 21, 2019 at 12:07 am #19993linda waldschmidtParticipant
@Steve-Dragoo, I’m confused, on one of your posts about WEI products in May you said you might try the products. Your response to my question, I take it that you have taken the WEI products. How long did you take the WEI products for amonth or several months? Did you receive positive results from taking them?
- This reply was modified 3 years, 1 month ago by Charlene Marshall.
May 9, 2019 at 9:03 am #19019
I am not doing a specific regimen for homeopathy accept avoidance of most meat and trying to increase raw veggies more – even in smoothies. Pineapple is supposed to be good for the lungs but I eat it and smoothie (new verb) it fresh. Links don’t post here a lot of times very well so send me your email. Mine is [email protected]. Regards Wei Laboratories, I see others here using the soup a and soup b + some sort of balancer. I need to decide soon if I will get their stuff because I have been using laser successfully but can find none in the Philippines. So their website is www Wei Laboratories dot com. I know I didn’t help much – sorry if I mislead you about homeopathy. I’ll send you Dr. John Clark’s newsletter link in your email.
Please ask any questions you want… – Steve
May 9, 2019 at 5:56 pm #19033
June 21, 2019 at 1:15 am #19994
As mentioned, I started Wei because I could not find a class 4 laser in the Philippines. Contact Wei and their free consult doctor to help you determine length, for me it is 2, four week supplies which seems to be somewhat the standard recommendation. They have helped me substantially and have some advantages over some of the other options that these great forums have posted the past year.
May 9, 2019 at 11:47 am #19032
May 9, 2019 at 12:54 pm #19034Tom NicholasParticipant
Michael…I have been on Esbriet for about 2+ years. While waiting for my initial Esbriet prescription, my pulmonary doctor had me on NAC and asked me to continue NAC after the prescription was filled. I am 69, not on oxygen, and seem to be (at the moment) “stable”, after losing about 1/3 of my lung function. I am not on oxygen. I have done considerable research on supplements for IPF, I do not claim to be an expert by any means. I am on the following supplements:
Turmeric, NAC, Nattokinase, Serrapeptase, Multi Vitamin, Potassium, Magnesium, Vitamin D. My son is both a Doctor of Pharmacology and a Naturopathic Doctor. My brother was diagnosed with IPF about a year ago, my mother died from it 20+ years ago. Due to the potential possibility of our IPF being due to heredity he takes many of the same supplements as a precautionary measure.
I read an article which indicated many IPF patients are really sort on vitamin D. I started taking 2000IU 2X per day. I recently had an initial evaluation for a lung transplant program. The blood work indicated, I was still way low on vitamin D. so they recommended 50,000IU once a week. I do notice a bit more energy since I began taking the large weekly dose of vitamin D.
After all is said and done it is really difficult to prove whether these supplements are helping, while they are not hurting me.
Good luck and I hope this helps in some way!
May 9, 2019 at 2:41 pm #19036
thanks for sharing your experience with us!.. I have read about NAC and will talk to my MD about including it in my regimen. May I ask you how you’ve managed these 2+ years with Esbriet’s multiple side effects?
Regarding vitamin D deficiency, it is a fact that most people who live in apartments in our modern cities and work 9 to 5 in office buildings most of their lives sheltered from sunlight, do have a problem with this vitamin.
IPF being hereditary is a possibility. On the other hand, I am surprised by the increasing numbers of IPF cases in our time! I don’t recall so many during the 60’s, 70’s or 80’s, or even before that, in our parents or grandparents time…
- This reply was modified 3 years, 3 months ago by Michael Panagiotopoulos.
May 9, 2019 at 4:03 pm #19039
I take serra and natto – empty stomach and separately. Serrapeptase 205000 SU 2x daily has especially helped my lungs. Also using a K-laser and good B vitamin complex. D3 was low but increased it on my own and always take K2 with m7 with the D3 – it is a big help.
I think we might all benefit knowing more about homeopathic over time too.
May 9, 2019 at 5:59 pm #19041Tom NicholasParticipant
Michael ( @mikepapa ), thank you for the kind words. Regarding Esbriet, initially as we increased the dosage, when I got to 3 pills 3X a day I started having loose stools. In fact, I called it “battery acid” diarrhea, it burned like heck. Thank goodness for this site, as many of us have had similar experiences, and there is no need to “reinvent the wheel”. The simple suggestion was to add probiotic yogurt to my morning meal. In 2 weeks I was back to normal…and been so ever since. that was the only side effect I had. being “fair skinned” I was scared regarding the sun light effect, but never had any problem with it. My brother is on OFEV and he tolerated it very well. then the manufacture offered a new improved dosage…less pills to take…shortly there after he did have diarrhea and went back to the original dosage scheme. it is my belief both drugs have similar side effects…and not everyone experiences the side effects or in the “same way”.
Regarding Vitamin D deficiency. One of the surprising results of my study…was that as you say most folks these days are out of the sunlight. however, when they go into the sun, they wear sun block. They now believe the use of sun block is causing deficiency in even healthy people. I read here PF 13 blocks out 99% any potential gain of vitamin D…who’d a thought?
When my mother had IPF…they did not call in IPF…that was in the 70’s…there were several references of what pulmonary fibrosis was called. In my mother’s case they called it Interstitial Pulmonary fibrosis…and the only real treatment was steroids (which did not work for her).
Best Regards to all, Tom
June 20, 2019 at 7:18 pm #19988Betty EdwardsParticipant
Not everyone has side effects from Esbriet. I’ve been on it for a couple of years with virtually no side effects. Give it a try before you decide.
June 21, 2019 at 8:22 am #20005
Hi Betty ( @betty-edwards )
Thanks for your feedback. Eventually I did start Esbriet 3 weeks ago, and now I’m on phase 3, i.e. triple pills three times a day. Side effects so far are mainly a constant fatigue, an upset and heavy tummy coupled with a loss of appetite and an increase in my blood Eosinophila cells population which, according to my MD, is an expected reaction to IPF and the drug. If by the end of the 6th week I’m still relatively OK, I’ll switch to the triplex pills (801 mg. each) and see how it goes.
On the other hand, I’m also still taking my homeopathic remedies…
- This reply was modified 3 years, 1 month ago by Charlene Marshall.
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