Am I going down a functional doctor rabbit hole?

[wabi-sabi]

It is very interesting that men with Crohns have higher rates of CFS according to their study or was it just a fluke that those particular men in the study just happened to contract it or did it have something to do with the type of medication they are on?

Yep, would be great to know! And... it's exactly what this study design can't tell us. I'll keep looking, but I'll take a break for a few days to rest the brain cells.

 

[Hope_eternal]

Yep, would be great to know! And... it's exactly what this study design can't tell us. I'll keep looking, but I'll take a break for a few days to rest the brain cells.

Oh yes please take care of yourself. I can do some more research this weekend. I don’t want to wear you out! You’ve done enough. I’m very appreciative. Thank you 🙏

 

[Wayne]

If your son genuinely has candida he should be treated according to guidelines put out by the Infectious Diseases Society of America. Those are available here: https://academic.oup.com/cid/article/62/4/e1/2462830

Too much evidence points to the ISDA being untrustworthy.

 

[Hope_eternal]

@Hope_eternal, there's a very good group for candida on facebook, if you're interested. The person who runs it also interfaces on a group for mitochondria nutrients which is based on a book about thiamine by Dr. Lonsdale.

I saw someone mention getting worse on nystatin, and that's very common, but there are a lot of natural remedies that don't have bad side effects. Hopefully your doctor, or even yourself, will be able to find something that doesn't make the problem worse.

Take care, don't give up.

Thank you! Yes I’d be interested in the group. I will look for the book you mentioned too. His doctor mentioned putting him on an anti fungal called diflucan. I need to look into this. She did say there’s natural treatments but the diflucan would be better for his case. I’m going to have to hold off though on treatment because his gastro wants to change his medication and I don’t want to do two med changes at one time. Thanks again for your message and encouragement.

 

[Violeta]

Thank you! Yes I’d be interested in the group. I will look for the book you mentioned too. His doctor mentioned putting him on an anti fungal called diflucan. I need to look into this. She did say there’s natural treatments but the diflucan would be better for his case. I’m going to have to hold off though on treatment because his gastro wants to change his medication and I don’t want to do two med changes at one time. Thanks again for your message and encouragement.

The group is called Candida Hangover be Gone. The owner compiles so much helpful information.

This doctor's online site is an incredible source of information.

https://www.drlamcoaching.com/nem-t...y-from-candida-infection-and-adrenal-fatigue/

This page looks interesting, too.

https://www.drlamcoaching.com/blog/candida-diet-natural-safe-and-effective/

He has a very realistic, safe, comprehensive approach.

Take care

 

[Johnmac]

I've worked on biology for a long time & have had limited results. The Australian transdermal B12 got rid of my food sensitivities, but not the fatigue.

If you google "How I cured CFS", most people did so via brain retraining & neuroplasticity & therapy for old traumas, etc. Almost no-one did so via nutrition - tho it often helped. There is a facebook group that explores all this - hosted by Raelen Agle.

(Haven't been doing all this long enough to report any results yet.)

So I’m beginning to wonder if my son is right and we’re going down a rabbit hole of trying this supplement and that supplement for all the deficiencies and funguses and viruses that show up on the functional doctors testing. For the last three months, we have been working with a functional doctor, whom I really like and trust but we put so much money into all the appointments and testing and supplements and aren’t seeing much outward progress, except for the initial positive improvement with his ability to speak in an audible voice, and that he now consistently can get out of bed for 20 minutes almost every day. Those are really great and we’re grateful but I’m just wondering if I’m buying into something that may in the end just disappoint him and me. I had an appointment with her today and she’s so lovely. I know she’s trying to help us she has a son as well so I know she feels empathy for us as she said it many times. She’s really thoughtful about her approach and is very gentle. His numbers are looking so much better with her treatment yet as typical with ME it’s not helping at all with the fatigue. Now she wants to treat a Candida overgrowth, which can be pretty intense. She promised to do it slowly to hopefully avoid any die off reactions but I don’t know …has anyone gone the functional route and had much success. Did they try the antivirals and antifungals and supplements for adrenal health and inflammation supplements like boseilla? I had such high hopes that she could help him. I found a doctor near us that worked with Jacob Teitelbaum. I’ve heard mixed reviews about whether his protocol works. His book boast 70%+ improvement in MOST his patients. I’m really at a loss. I’m so desperate to help my son. I’ve already spent thousands of dollars just this past year which I’m OK with if the end result is his return to health or at least to some capacity. Ug my hope flame is flickering today. I’m so worried for him. Sometimes it feels like a monumental responsibility carrying all decisions in so far as his health. It’s a lot. Thank you for letting me vent and if anyone has any experience with all the above and can shine some light on my worries, I’d be very appreciative. Have a good night. ❤️‍🩹

 

[Hope_eternal]

I've worked on biology for a long time & have had limited results. The Australian transdermal B12 got rid of my food sensitivities, but not the fatigue.

If you google "How I cured CFS", most people did so via brain retraining & neuroplasticity & therapy for old traumas, etc. Almost no-one did so via nutrition - tho it often helped. There is a facebook group that explores all this - hosted by Raelen Agle.

(Haven't been doing all this long enough to report any results yet.)

Thank you 🙏 I’ve come across some YouTube videos that promoted brain training/neuroplasticity. I hear mixed reviews on this. Please let me know how it goes for you. I’m almost certain I won’t be able to convince my son to do those things. He only wants to take pills. But maybe if he has absolute proof he would be willing to try.

 

[Judee]

Not to discourage anyone. I do think it could possibly help those with fatigue. However, ME is a whole 'nother disease. https://forums.phoenixrising.me/threads/poll-has-anyone-recovered-with-the-gupta-program.83523/ (see results)

 

[Seadragon]

Thank you 🙏 I’ve come across some YouTube videos that promoted brain training/neuroplasticity. I hear mixed reviews on this. Please let me know how it goes for you. I’m almost certain I won’t be able to convince my son to do those things. He only wants to take pills. But maybe if he has absolute proof he would be willing to try.

Obviously I am not a doctor so this is just my own thoughts, but I still think that either the drug your son is taking for his Crohns and the resulting immunosuppression or the Crohns itself or possibly a combination of both could very likely be the cause of your son's extreme fatigue considering the timing with the onset of his illness - that surely cannot be coincidental.

I'm unconvinced any alternative treatments will do anything to alleviate this unless the primary culprit is identified first.

I wonder if talking to a reputable immunologist about all this who has an interest and knowledge of autoimmune diseases also (as well as his usual consultant) might shed some light on whether it could be the immunosuppressant properties of the drug or the Crohns or both causing the extreme fatigue.

You are such a wonderful and caring and sensitive mother. I am one who had no such support and was virtually left to deal with my illness alone at the age of 19. I would have given anything for the loving parental support and care you give your son. I think we all think you are amazing here!

 

[Hope_eternal]

Obviously I am not a doctor so this is just my own thoughts, but I still think that either the drug your son is taking for his Crohns and the resulting immunosuppression or the Crohns itself or possibly a combination of both could very likely be the cause of your son's extreme fatigue considering the timing with the onset of his illness - that surely cannot be coincidental.

I'm unconvinced any alternative treatments will do anything to alleviate this unless the primary culprit is identified first.

I wonder if talking to a reputable immunologist about all this who has an interest and knowledge of autoimmune diseases also (as well as his usual consultant) might shed some light on whether it could be the immunosuppressant properties of the drug or the Crohns or both causing the extreme fatigue.

You are such a wonderful and caring and sensitive mother. I am one who had no such support and was virtually left to deal with my illness alone at the age of 19. I would have given anything for the loving parental support and care you give your son. I think we all think you are amazing here!

Thank you so much @Seadragon ❤️ that is the very age my son’s fatigue set in. I’m so sorry you were left on your own. How incredibly sad. You deserved better.. How very difficult and heartbreaking that must have been for you! I’m amazed at your strength and courage in navigating this on your own. You are quite incredible. How ever did you do it?? I’m in awe ❤️‍🩹

I thought that too about the Crohns and the medication but 4 Crohns specialists have all said the fatigue he has isn’t something they’ve ever seen or heard of in patients. That it’s not the typical fatigue that Crohns patients experience. The one specialist that is treating him now said she would change his medication to see if he does better on it but I’m terrified to change it. He will be getting 3 large doses (a 1 1/2 hour infusion each time) for the next 3 months. I’m not sure if that’s a good idea and they don’t seem to know either. I’m so worried 😟.

I’ve never heard of an immunologist until I got on this forum —that’s a great suggestion! I will look into finding one tomorrow.

Thank you so much for your note and your kind words. They truly touched my heart., ❤️ I wish I could do more for him. It hurts so much that I can’t seem to fix this for him! I really thought we were going to find the answer but with each passing month I’m beginning to feel more and more heartbroken as he stay stuck in his bed 😢

 

[wabi-sabi]

I thought that too about the Crohns and the medication but 4 Crohns specialists have all said the fatigue he has isn’t something they’ve ever seen or heard of in patients. That it’s not the typical fatigue that Crohns patients experience. The one specialist that is treating him now said she would change his medication to see if he does better on it but I’m terrified to change it. He will be getting 3 large doses (a 1 1/2 hour infusion each time) for the next 3 months. I’m not sure if that’s a good idea and they don’t seem to know either. I’m so worried

It's so hard to know what to do in these situations. There does not seem to be any data on ME/CFS and Crohn's together. So here's one way of looking at it:

1) The new medication will makes his Crohn's better and the ME/CFS better.
2) The new medication will make his Crohn's better and have no effect on the ME/CFS.
3) The new medication will make his Crohn's better and the ME/CFS worse.

Now, I know you're scared of 3 and that is a scary thing. But it's only once chance out of three, so the odds are in your favor.

The other thing to consider is that your son has two serious illnesses. One of them (Crohn's) is more treatable than the other (ME/CFS). There's no possible way that not treating the thing that's treatable will make him better. By trying the new Crohn's med, you are at least doing all you can for one of his diseases. I just have to think that if his Crohn's is better he will feel a bit better, even with the ME/CFS.

I guess it boils down to: don't be so afraid of the unknown that you lose sight of the benefits of the known.

On the brain training front, well that's a sore point for most of us. Wouldn't it be wonderful if we could just change our thoughts and our illness will go away? But I can't think of any disease where this works. Even mental illnesses just don't go away when you think happy thoughts.

I think brain training is attractive because it gives a sense of control in the face of uncertainty, terror, and all the things you are facing right now. But in the face of serious stuff, people deserve effective treatments. I'm going to go out on a limb and say brain training isn't it. We are sick, not disobedient puppies in need of training.

Now that's not to say that how you think about serious chronic illness doesn't matter. You need enormous mental strength to get through it. Things like meditation, prayer, community, therapy etc., are terribly important. But the key is, none of those things promises to cure the illness. They just give you the strength to bear it and care for it.

He only wants to take pills.

That strikes me as quite sensible. I've done lots of therapy and meditation and all of that self-care stuff to deal with the illness, but the only thing that's made the illness itself better was finding the right medication. And man, did it take years! I have a bedside table full of pill bottles right now, and it makes me so happy. They each make me feel a bit better, even if I am still sick. Without them I would not be able to roll over in bed, feed myself, or type this to you right now.

It's scary to think that a person can be so sick that he needs medicine. But many of us are that sick, with a variety of diseases. I'm thankful everyday that I live in the 21st century. Now I'd rather live on Star Trek, because I think this illness will be curable by then, but anyway. I'm starting to ramble again, but what I'm trying to say is, don't be more afraid of the treatment than the disease. Admitting you need meds, if just a form of admitting you need help and can't do everything on your own, and we all need that.

If you don't know Hank Green, you might take a look at some of his talks about chronic illness. He also has IBD.

Sorry about rambling on- the brain you know.

I'm thinking of you and sending hugs.

 

[Violeta]

Dr Gominak has several videos about the effectiveness of Vitamin D, B vitamins, and especially B5 on autoimmune diseases such as Crohn's.

Here's one video in case you are interested.

https://www.findinggeniuspodcast.co...urologist-and-expert-on-the-human-microbiome/

Also, Korean panax ginseng may help.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6606836/

 

[Hope_eternal]

Not to discourage anyone. I do think it could possibly help those with fatigue. However, ME is a whole 'nother disease. https://forums.phoenixrising.me/threads/poll-has-anyone-recovered-with-the-gupta-program.83523/ (see results)

That was a very interesting thread. Thank you for sharing it. It seems in target with the information I came across. My son was diagnosed by an endocrinologist and rheumatologist as having ME but honestly he only has a handful of the symptom. Extreme fatigue, insomnia/messed up sleep cycle, PEM and inability to focus. In a weird way I feel he’s fortunate to not have more than that even though I acknowledge his situation is quite difficult. When I hear about what many of you are going through it boggles my mind how this illness was never taken seriously. How could they not “see” how desperately this illness needs attention! It’s absolutely mind boggling.

 

[Hope_eternal]

Now, I know you're scared of 3 and that is a scary thing. But it's only once chance out of three, so the odds are in your favor.

That’s a good way to look at it. I guess I’m having a hard time playing the odds I want absolute definite guarantee that he’ll be ok. He’s my baby and I definitely don’t want a decision I made to make things worse. I have considered it might very well make things better. In fact if they had listened to me 8 months ago, before he got diagnosed with ME, they would have changed his med and I wouldn’t be none the wiser and never even blinked twice! Because back then I was convinced his med or Covid caused his current condition. But now that ME could be a factor it’s making things so hard.

That strikes me as quite sensible. I've done lots of therapy and meditation and all of that self-care stuff to deal with the illness, but the only thing that's made the illness itself better was finding the right medication. And man, did it take years! I have a bedside table full of pill bottles right now, and it makes me so happy. They each make me feel a bit better, even if I am still sick. Without them I would not be able to roll over in bed, feed myself, or type this to you right now.

Agreed. It’s because of the medication and supplements that he gained some energy back and for that I’m grateful he’s willing to take them. If you don’t mind me asking, what to you find most helpful in your pill arsenal? We started noticing improvements when he started valacyclovir and a combination of supplements but it hasn’t been enough to get him out of the bed for more than 20 mins a day.

Now I'd rather live on Star Trek, because I think this illness will be curable by then, but anyway. I'm starting to ramble again, but what I'm trying to say is, don't be more afraid of the treatment than the disease. Admitting you need meds, if just a form of admitting you need help and can't do everything on your own, and we all need that.

Now wouldn’t that be nice! Beam me up Scotty lol 😆 and yes I too am glad we live in the 21st century and have medication to assist in the healing process ❤️‍🩹

If you don't know Hank Green,

I hadn’t heard of him. Thank you for sharing. Oh man he had me cracking up 😂 only because I can relate. Although I don’t have Crohns I do have similar symptoms and issues of that of a Crohn’s sufferer. At 38 I had to have my large colon removed due to colon cancer. So although I’ve never pooped my pants I’ve come very close and have even had to drop my drawers on the side of the road to avoid a poop my pants disaster! I like his attitude. He’s quite likable and has a great deal of wisdom. I will share it with my son. I think he’ll enjoy listening to him. Thank you!

 

[wabi-sabi]

That’s a good way to look at it. I guess I’m having a hard time playing the odds I want absolute definite guarantee that he’ll be ok. He’s my baby and I definitely don’t want a decision I made to make things worse.

That's so understandable. I think it's much harder to make these decisions for your child than it would be for yourself. Maybe you can temper that awful responsibility with thinking that he's getting old enough to make some of these decisions with you?

If you don’t mind me asking, what to you find most helpful in your pill arsenal?

I'll give some general info, but I'm not comfortable giving much specifics because I don't want to suggest what works for me would be the exact thing that helps your son- we have different medical situations. I don't mean to be obstreperous, just being careful. It's like this: my sister has anxiety and is quite worried about me. At one point (right after she had been diagnosed) she started haranguing my to take anxiety medication (a disease I thankfully don't have) because she felt so much better when when she got the rights medication for her disease. I couldn't get through to her that taking meds for a disease you don't have isn't likely to be helpful. That's anxiety for you!

Anyway, the meds that have made a big difference for me are the ones that treat MCAS. That's partly why I think the Crohn's treatment will help your son. ME/CFS isn't (yet) as treatable as we'd like, but other diseases that we have are. The right meds to treat my other disease have made a good difference to the ME/CFS. I've no idea how or why, but I'm grateful.

I also had iron deficiency which showed up on a blood test by my doctor. Wonder of wonders, taking iron makes me feel better! Now, why did it take 9 years for a doctor to test this?! I'm sure your Crohn's doctor is looking at nutrition stuff, since that's such a big issue in Crohn's. But if he hasn't mentioned good nutrition stuff, ask him about it. Healthy diet is really important in chronic illness (see my iron issues), but no diet will cure an autoimmune disease no matter what internet influencer says it will.

Hank has a funny video on this too:

In terms of the ME/CFS, the things that have helped are the things that treat orthostatic intolerance. That's a large part of why I'm stuck in bed. I can manage the fatigue and PEM part with pacing, but there's no amount of lifestyle changes or happy thoughts that will keep my blood pressure up. There are a number of meds that work on this and that different doctors use. I've tried a number of them, and the one that helps me is mestinon, the one that Dr. Systrom researches. This is not to suggest that one will work for your son. First you need to find out if your son even has orthostatic intolerance. (That principle of treating the disease you have and not the one you don't!) Do any of your docs have familiarity with this? Finding the mestinon was a combo of luck and persistence. There's a whole list of appropriate and good medications for orthostatic intolerance that the ME/CFS doctors use. I didn't get to see an ME/CFS specialist, so it took years of trial and error to finally get mestinon. A doctor who knew about orthostatic intolerance and didn't just think I was deconditioned could have figured out what medication to use a lot faster. At any rate, orthostatic intolerance is one of the treatable symptoms of ME/CFS. If your son has this one, treating it would probably help.

Here is Dr. Bateman's handout on orthostatic intolerance:
https://batemanhornecenter.org/wp-c...Orthostatic-Intolerance-Education-Handout.pdf

You'll notice on the salt and fluid recommendations that she says you need to talk to your doctor about your other conditions before taking in lots of extra fluid and salt. Crohn's is definitely one of those other conditions. So if your son does have OI, you would want to run dietary changes by the Crohn's doctor to make sure they work for Crohn's too. Also, if he's having diarrhea and malabsorption from the Crohn's that would make OI worse, so one more reason for controlling the Crohn's as much as possible.

Oh man he had me cracking up

You gotta have some humor to survive!

 

[Seadragon]

Thank you so much @Seadragon ❤️ that is the very age my son’s fatigue set in. I’m so sorry you were left on your own. How incredibly sad. You deserved better.. How very difficult and heartbreaking that must have been for you! I’m amazed at your strength and courage in navigating this on your own. You are quite incredible. How ever did you do it?? I’m in awe ❤️‍🩹

I thought that too about the Crohns and the medication but 4 Crohns specialists have all said the fatigue he has isn’t something they’ve ever seen or heard of in patients. That it’s not the typical fatigue that Crohns patients experience. The one specialist that is treating him now said she would change his medication to see if he does better on it but I’m terrified to change it. He will be getting 3 large doses (a 1 1/2 hour infusion each time) for the next 3 months. I’m not sure if that’s a good idea and they don’t seem to know either. I’m so worried 😟.

I’ve never heard of an immunologist until I got on this forum —that’s a great suggestion! I will look into finding one tomorrow.

Thank you so much for your note and your kind words. They truly touched my heart., ❤️ I wish I could do more for him. It hurts so much that I can’t seem to fix this for him! I really thought we were going to find the answer but with each passing month I’m beginning to feel more and more heartbroken as he stay stuck in his bed 😢

I'm very lucky that I have a wonderful supportive and very loving husband and sister even though my parents were not there for me

Don't give up hope - keep researching, keep looking for answers, keep talking to consultants and keep posting on forums and hopefully in time, the answers will come and things may improve.

 

[Wayne]

Don't give up hope - keep researching, keep looking for answers, keep talking to consultants and keep posting on forums and hopefully in time, the answers will come and things may improve.

Bingo, bingo, bingo!!! Very succinctly sums up my own philosophy. I think it's unlikely any one health care practitioner is going to have all the answers for us, whether conventional, alternative, functional, or whatever. In the end it behooves us all to keep looking for the specific solutions to our own unique health profile. And we're all different!

 

[Hope_eternal]

I'll give some general info, but I'm not comfortable giving much specifics because I don't want to suggest what works for me would be the exact thing that helps your son- we have different medical situations. I don't mean to be obstreperous, just being careful.

I understand. I completely get where you’re coming from. We all have differences and I never assume what works for one will work for him. I never try anything with him until I’ve done considerable research and feel there’s little chance for it to go badly. All bodies have their unique strengths and weaknesses. That’s for sure.

The right meds to treat my other disease have made a good difference to the ME/CFS. I've no idea how or why, but I'm grateful.

That’s wonderful. I’m happy to hear that for you! Gives me some hope. He’s due to have his med change in a couple weeks and my anxiety is high. I do hope it’s a positive move for him.

Also, if he's having diarrhea and malabsorption from the Crohn's that would make OI worse, so one more reason for controlling the Crohn's as much as possible.

Thank you for the OI information. I do t think that is an issue with him for now. He maintains his only symptoms are chronic physical fatigue, mental fatigue, PEM and sleep issues. He just spent the last 2 days sleeping 15 hrs a day because he took an extra shower :/ I’ve tried to tell him you all say that’s a real energy zapper but …not sure why he doesn’t listen. I think this illness is very hard to understand. To him a shower seems benign. I didn’t realize myself that it was an energy zapping activity until I heard that from you all. It’s something we take for granted when we’re healthy and seems so easy. But when you’re dealing with chronic fatigue, it’s a whole different story.

Thanks so much for your note. Have a wonderful day!

 

[Hope_eternal]

I'm very lucky that I have a wonderful supportive and very loving husband and sister even though my parents were not there for me

Don't give up hope - keep researching, keep looking for answers, keep talking to consultants and keep posting on forums and hopefully in time, the answers will come and things may improve.

That’s wonderful! To have people in your corner is everything. I appreciate the encouragement 😊 especially today as I’m really feeling frustrated exhausted and sad. Thank you!

 

[Hope_eternal]

Bingo, bingo, bingo!!! Very succinctly sums up my own philosophy. I think it's unlikely any one health care practitioner is going to have all the answers for us, whether conventional, alternative, functional, or whatever. In the end it behooves us all to keep looking for the specific solutions to our own unique health profile. And we're all different!

I agree. I don’t think, for at least right now, the treatment for this is a one stop shop. I hope one day soon it will be and people get some real answers and some real treatments that bring healing and relief from this.