Lobkos way's secret and new treatments for fibro

[Tipnatee N]

I may have lost most sense of taste and smell but once a while I'll get what my doctor called the phantom smell. I'm think I'm getting it right now lol. talk about it. It's gonna be a very very long while before I could be as brave as you Lubkos way. Very Very

Longggggggggg while. :mrgreen:

 

[Lubkos way]

I just was so sick and tired of being sick and tired!It is changing my life and even if I had no other improvements,it was more than worth it.

 

[Tipnatee N]

Good for you Lubkos way. I'm very glad you are doing so much better.

 

[medicmurphy]

If you don't mind medicmurphy,just one question.Do you have IBS or other digestive issues?

Yes, of course I have IBS; lol.....I’m a woman, don’t we all. :lol:

 

[medicmurphy]

I may have lost most sense of taste and smell but once a while I'll get what my doctor called the phantom smell. I'm think I'm getting it right now lol. talk about it. It's gonna be a very very long while before I could be as brave as you Lubkos way. Very Very

Longggggggggg while. :mrgreen:

Does your phantom smell suspiciously of poo.. :lol:

 

[medicmurphy]

I agree with you about the question of long term efficacy of this fecal matter transplant, Tipnatee. I’ve heard of this procedure for C-difficile.

 

[diamond]

I was 100% healthy also before i got fibro...no antibiotics....no antivirals and have never had flu and rarely even a cold and haven't had one for over 15 years despite fibro.

I also ate pretty super healthy diet....low carbs very little sugar and vegetarian.

I was never sick in anyway like medicmurohy before fibro hit out of no where...but i had been under tremendous emotional stress for about 3 years and then slipped off my back doorstep and broke my right foot...twice in 18 months!

I had never fell before in my life....and yes i should have had the steps that were old soft bricks and narrow fixed after the first slip.

Fibro set in first in my foot after it physically healed i still struggled with severe pain in it .......then the same pain spread through my whole body over the next few months.

I kept blaming it on the fall...thinking i would recover.

Good Luck to you Lubkos way..if its working for you that's great.

I have heard of this therapy for C.diff too. I know they have used it in UK and it apparently worked...at least it did in the documentary i watched.

I only started with digestive issues about 8 years into fibro.... but i truly believe mine has been caused by cocodamol giving me constipation ...colon stretching as a consequence and getting sluggish as its a muscle too ...then having to take lactulose and my whole system messed up between the two meds and inactivity not helping either.

I gave in and started taking cocodamol but only after many years with no meds to try and keep me more active and instead got bowel issues too!

 

[vickythecat]

I weirdly ok with the whole feces idea (especially if it comes from a vegan)

It is more and more evident that the bacteria in our gut play a huge part in our overall well-being. (There was a recent detailed article about it in many newspapers incl. The Guardian as well) I don't think you necessarily have to had (childhood) illnesses, use of antibiotics, lots of medications etc., because we are all being exposed to toxins every single day. There is so much crap in the every day food we all eat - they are filled with antibiotics, hormones, pesticides etc. Even the air we breathe is toxic in so many ways, or the water we drink etc.

I would give this a try only if it was quiet easily available and affordable to be honest. But yes, it is promising stuff. I really hope more and more scientists begin to work on this and that there are trials I could maybe be a part of (only way I could possibly afford a possible new treatment).

I am very glad it works for you Lubkos way - and thanks for sharing all the information on it. Please do keep us informed on your progress or any news you might hear on the topic (I surely will be keeping an even more open mind on the topic, and stay up-to-date).

 

[Tipnatee N]

Does your phantom smell suspiciously of poo.. :lol:

Most of my phantom smell are mostly like sulfur or something burning. Which I had it checked and was cleared of any sign of tumors, but last night was quite close after the unexpected vivid imagination that I had lol:lol:

 

[Lubkos way]

Unfortunately there are a ton of unknowns,but I will not argue with success.It is quite possible that chronic stress,trauma(physical or emotional)can provoke change in microbiota compositions.

There is the brain stomach axis,which is linked by a second brain(your gut) and I believe that the microbes play the role of being the button pushers of your immune system,so to speak,and 95% of our seratonin is made in our gut,which would explain why depression is almost guarenteed in fibro patients.

We all have a different set of buttons that control everything in our wildly different microbiata components.That is why,I believe,we all have differences between our illness symptoms.No one knows how much we ingest that damages us daily.

The other point about not having illness,thus no major meds in your pasts,the only thing that I have come up with is that generally women take better care of themselves and go to see doctors more often.They also have more infections,because their lady part has its own microbial set up,they suffer from UTI's,I have not read up on it,but are they not treated always with antibiotics?

I am guessing that that is why more women than men have fibro or it can be as simple as women are predisposed genetically or suffer disruptions easier because of complex hormonal systems compared to men.

I can't stress the importance of reading the many sites that offer info,google FMT treatment for fibromyalgia,there is a site that discusses a man who says he was cured after 6 different donor enemas,over a few years.I dream of being the second,and I do not know if it is our holy grail(hidden in poo!),but I intend to find out!

Besides,after the first time,you get desensitized to the procedure,because you know what you are getting back in return,your life!! There was a reason I kept quiet,most people think I am nuts but I must say,I would rather be considered nuts than suffer from fibro,without a doubt!

 

[vickythecat]

I can't stress the importance of reading the many sites that offer info,google FMT treatment for fibromyalgia.

I will definitely do extensive research on this; but because I am little foggy right now to do that tonight, and you might have the answer to my question, I am really curious;

Like you mentioned this treatment also helps with mental health issues (research showed how gut bacteria differ for people PTSD - amazing finding!). Would the same treatment for fibro also work for mental health illnesses (and more) or is the treatment tailor-made for every illness?

Thanks!

 

[diamond]

It's all fascinating...i only recently learnt that seratonin is made in the gut. So bravo its helping and i will have a read too.

Although i know it has no real bearings on your findings i probably went to the doctors less than anyone i know before fibro and never had a UTI..but it's true we ladies do have more hormonal stuff going on all our lives and often fibro hits mid life when our female hormones are falling....but then young people also get fibro.

Keep us updated lubkos way..i think you are pretty brave to have a go yourself at this treatment....putting someone else's poo inside is not the most pleasant treatment that comes to mind!

 

[Lubkos way]

I am sure of several things,before I began it,I was going crazy with pain.I was waking up everyday in agony.It was always the same,a sharp stabbing pain in my left lower quadrant.That was on top of all the other issues and it was nine months with no end in sight.

I was at the end of my rope!It was,do it,or spiral into another deep depression.I was so wound up in anxiety,pain and isolation that it was my last hope.Everything has changed,I am calm,able to think much clearer,most of the anxiety has lifted and I really do feel happier.I believe strongly that I have begun to heal physically and emotionally.

I actually sleep about six and a half hours a night now,every night,and most nights I sleep so soundly that I barely have to make the bed in the morning because the sheets have not been moved at all.I actually have begun to have a feeling of restorative sleep again,and I am sure that it has improved my psychological state as well.

All the changes have been magical,and the only side effect if you get it right,you will sleep and be tired because the immune system has been engaged.I feel like it has been turned on because both herniated discs in my neck seem to be regenerating.They do not feel like they are crunching my cartilage when I turn my head anymore.Both they,and my shoulders tingled for 2 months after the first treatment,and now only hurt from overworking.

The results are unbelievable,because there are improvements that are coming from all over the place!

 

[diamond]

So the pain that was troubling you the most was in your stomach?...i can see why this would drive your determination and focus to be on resolving stomach issues with the benefits it seems to have helped your whole body improve a lot.

Was the rest of your body as painful fibro wise as your stomach issues.

The pain in your herniated disks reducing is wonderful but do you think that is a separate issue to body wide fibro pain? Or would you say there has been a huge reduction in body wide fibro pain....say in your legs back arms feet or where ever else you suffer from pain?

Hope you don't mind the questions...i only ask as all information shared is helpful in getting the full picture.

 

[Lubkos way]

You know what,the sharp pain in my gut,was on top of head to toe fibro muscle pain.That is why I could not handle it anymore,it was also neck and shoulder pain.
The point about my neck is that since I was told that I had disc disease,it got progressively worse over the last ten years then it changed direction 180'.My immune system has begun to repair the area,which means it has finally been switched on again!
My shoulders have hurt constanly since the year 2000,they too have virtually stopped hurting.I had many symptoms that have faded away,all fibro related.