Doctor visit blues…don’t know what to do

[lenora]

Well, you made a major decision concerning the Crohn's medication. It's made...let it go for as long as possible. My thoughts are with you, I know you're worn out and do wish you had some help or would take better care of yourself. TV? Something on down streaming, anything? Something to take your mind off your problems long enough for a break.

My guess is that you're sleep is badly interrupted also. I'm so sorry. Yours, Lenora

 

[Hope_eternal]

@maddietod @kushami Well I called JH to see if we could see Dr Rowe. They are only accepting people for a study on POTS and you have to be a resident of MD. They are taking ages 15 to 25 I believe. Since we don’t live in MD that leaves us out. I asked if they recommend doctors and was told no. I need to call my GP.

 

[Rufous McKinney]

He suggested we put my son on a stimulant called provgil (modafinil)

My GP wanted me to try Modafinil as well. Stanford was using it, back when we had more researchers there.

My GP has one ME patient, probably in her late 70s' who uses Modafinil and she really likes it. Loves it.

I could not tolerate even a very low dose, and it crashes me, even if I do nothing out of the ordinary at all.

I don't think this means the doctor you saw gave you a bad recommendation. I think it's just they don't entirely understand how sensitive we often are.

I"m not convinced it's very helpful. A cup of coffee is probably less dangerous.

 

[Rufous McKinney]

My GP wanted me to try Modafinil as well

My GP actually knew about ME and diagnosed me with SEID. My doctor is quite sophisticated. Very smart. Runs an atypical office. Fifty minute appointments. Writes books. Got nominated for a Nobel Prize (he told me)

He got me on LDN a number of years ago, which I don't think I'd heard of at the time. That has helped me. altho it's not a cure. Some very unpleasant symptoms, went away or became far less intense.

 

[Rufous McKinney]

brain inflammation

that is just what this has always felt like to me...lower brain stem centered.

 

[Hope_eternal]

Well, you made a major decision concerning the Crohn's medication. It's made...let it go for as long as possible. My thoughts are with you, I know you're worn out and do wish you had some help or would take better care of yourself. TV? Something on down streaming, anything? Something to take your mind off your problems long enough for a break.

My guess is that you're sleep is badly interrupted also. I'm so sorry. Yours, Lenora

We may try a new medication in a few months. I’m sad I couldn’t figure it out and feel very torn about it. But yes, a decision was made and I hope despite it that we can still find him some relief from the fatigue.

My sleep is better the last three months. I had to stop trying to check on him so much during my sleep hours. Sometimes it would keep me up 2 to 3 hrs due to brain trying to figure everything out.

I do get in some down time. When I break free from the research, I watch TV, take walks, crochet or paint. Not as much as I’d like but having those moments quiets my mind. Thank you for your care. You are very sweet.,I appreciate it.

 

[Hope_eternal]

My GP actually knew about ME and diagnosed me with SEID. My doctor is quite sophisticated. Very smart. Runs an atypical office. Fifty minute appointments. Writes books. Got nominated for a Nobel Prize (he told me)

He got me on LDN a number of years ago, which I don't think I'd heard of at the time. That has helped me. altho it's not a cure. Some very unpleasant symptoms, went away or became far less intense.

One functional doctor recommended we try LDN. They wanted to hold off for now but keep it as an option. I. Will ask about it again. It’s supposed to be good for Crohns too.

 

[Hope_eternal]

don't think this means the doctor you saw gave you a bad recommendation. I think it's just they don't entirely understand how sensitive we often are.

I"m not convinced it's very helpful. A cup of coffee is probably less dangerous.

I’m pretty certain it would cause my son to crash too. I don’t think it’s worth a try in the state he is in. I feel like his body needs support, not stimulating drugs. I’m not a doctor but just my sense about things and seeing how his body responds to activity.

 

[Mary]

Hi @Hope_eternal - I thought you might find this interesting: https://forums.phoenixrising.me/thr...ng-major-improvements-with-lactoferrin.90502/

I bought lactoferrin after reading about it here on PR and to my surprise, it improved my gut functioning quite quickly. It hasn't improved my ME/CFS but I am considered a moderate case anyways.

I've done a lot of experimenting over the years and overall my experimenting has improved my functioning by maybe 30%, it's hard to quantify. I was never bedridden (unless crashed) but I never felt well or had any real energy for many years and that changed with several different supplements.

And I've only had one doctor who was able to help me a little (he recommended d-ribose) but at least he believed me and was willing to work with me if I wanted to try something or get certain testing, which is the best many of us can hope for.

I agree you need to follow your gut here (no pun intended!). I think lactoferrin is a pretty safe thing to try. I'm quite sensitive to meds though it's not a pharmaceutical but I had no bad reaction to it, and a positive one rather quickly, to my surprise. But I don't have Crohn's.

I just saw this article you might find interesting: https://www.frontiersin.org/articles/10.3389/fnut.2021.759507/full

(The Functional Role of Lactoferrin in Intestine Mucosal Immune System and Inflammatory Bowel Disease)​

 

[Hope_eternal]

Hi @Hope_eternal - I thought you might find this interesting: https://forums.phoenixrising.me/thr...ng-major-improvements-with-lactoferrin.90502/

I bought lactoferrin after reading about it here on PR and to my surprise, it improved my gut functioning quite quickly. It hasn't improved my ME/CFS but I am considered a moderate case anyways.

I've done a lot of experimenting over the years and overall my experimenting has improved my functioning by maybe 30%, it's hard to quantify. I was never bedridden (unless crashed) but I never felt well or had any real energy for many years and that changed with several different supplements.

And I've only had one doctor who was able to help me a little (he recommended d-ribose) but at least he believed me and was willing to work with me if I wanted to try something or get certain testing, which is the best many of us can hope for.

I agree you need to follow your gut here (no pun intended!). I think lactoferrin is a pretty safe thing to try. I'm quite sensitive to meds though it's not a pharmaceutical but I had no bad reaction to it, and a positive one rather quickly, to my surprise. But I don't have Crohn's.

I just saw this article you might find interesting: https://www.frontiersin.org/articles/10.3389/fnut.2021.759507/full

(The Functional Role of Lactoferrin in Intestine Mucosal Immune System and Inflammatory Bowel Disease)​

This is so wonderful! Thank you so much for bringing it to my attention. I think this is definitely worth a try. I read a few of the success stories and it gives me hope. I pray this brings him some relief. Bless you for sharing this!! I’m going to reach out to his doctor tomorrow just to make sure she doesn’t have any concerns. If there’s no concerns, we will be trying this.

 

[Hope_eternal]

This is so wonderful! Thank you so much for bringing it to my attention. I think this is definitely worth a try. I read a few of the success stories and it gives me hope. I pray this brings him some relief. Bless you for sharing this!! I’m going to reach out to his doctor tomorrow just to make sure she doesn’t have any concerns. If there’s no concerns, we will be trying this.

I got the ok from his doctor. Will start this as soon as the supplement arrives and will post results. Please let this bring some relief and hope for my son !

 

[Mary]

I got the ok from his doctor. Will start this as soon as the supplement arrives and will post results. Please let this bring some relief and hope for my son !

I'm amazed you were able to contact his doctor and get a reply in one day! That is almost unheard of but I'm very glad you have a doctor like that..

I do hope the lactoferrin helps your son in some way(s). The only thing I would caution is to not get too hopeful. I've tried literally dozens (perhaps 100s) of things, and it's a rather small handful which has made a difference for me, so I've learned to just take a neutral attitude when I try something new - I will think, it may or may not help, but it seems worth a try. But getting hopes dashed is very painful so I don't get my hopes up.

 

[Hope_eternal]

I'm amazed you were able to contact his doctor and get a reply in one day! That is almost unheard of but I'm very glad you have a doctor like that..

I do hope the lactoferrin helps your son in some way(s). The only thing I would caution is to not get too hopeful. I've tried literally dozens (perhaps 100s) of things, and it's a rather small handful which has made a difference for me, so I've learned to just take a neutral attitude when I try something new - I will think, it may or may not help, but it seems worth a try. But getting hopes dashed is very painful so I don't get my hopes up.

Haha I just got lucky I think. It surprised me as well. It normally does take a few days! Yes so true getting hopes dashed is no fun. Been going through quite a bit of that this past year. I think it’s aged me 10 years I will try and be neutral. Thanks again.

 

[L'engle]

When I first started trying things I didn't have much success. It was discouraging. I started with things for 'energy' and 'adrenal fatigue' which either didn't help or led to pushing and crashing with no improvement. Ive had better luck with basic vitamins and minerals and with things that are anti-inflammtory. Upstream of the 'low energy' which is more a result than a cause I think.

Don't get discouraged if several things in a row don't help, just take a break and keep carefully trying.

I've never tried lactoferrin. I hope it helps your son!

 

[Hope_eternal]

When I first started trying things I didn't have much success. It was discouraging. I started with things for 'energy' and 'adrenal fatigue' which either didn't help or led to pushing and crashing with no improvement. Ive had better luck with basic vitamins and minerals and with things that are anti-inflammtory. Upstream of the 'low energy' which is more a result than a cause I think.

Don't get discouraged if several things in a row don't help, just take a break and keep carefully trying.

I've never tried lactoferrin. I hope it helps your son!

I’d be very interested in the vitamins and minerals and things that are anti inflammatory that made a positive difference for you.,We have him on vit c, probiotics, fish oil, vit d, homocystex plus, HPA support, boswellia, liver support, valacyclovir and depression meds. We will be trying LDN soon. I appreciate your words of encouragement. It means a lot! Thank you.

 

[Hope_eternal]

And I've only had one doctor who was able to help me a little (he recommended d-ribose) but at least he believed me and was willing to work with me if I wanted to try

We have a container of d ribose we haven’t tried yet. Was that helpful for you?

 

[Hope_eternal]

My GP actually knew about ME and diagnosed me with SEID. My doctor is quite sophisticated. Very smart. Runs an atypical office. Fifty minute appointments. Writes books. Got nominated for a Nobel Prize (he told me)

He got me on LDN a number of years ago, which I don't think I'd heard of at the time. That has helped me. altho it's not a cure. Some very unpleasant symptoms, went away or became far less intense.

That’s great you have a doctor that actually knew about ME. That’s amazing. We are thinking about trying LDN. I’m just trying to figure out if it will help with his symptoms which are extreme fatigue, bedridden, PEM and brain fog if tries to concentrate. We are mostly looking for something to help him be able to get out of the bed.

 

[L'engle]

I’d be very interested in the vitamins and minerals and things that are anti inflammatory that made a positive difference for you.,We have him on vit c, probiotics, fish oil, vit d, homocystex plus, HPA support, boswellia, liver support, valacyclovir and depression meds. We will be trying LDN soon. I appreciate your words of encouragement. It means a lot! Thank you.

Quercetin and resveratrol have helped me, as well as luteolin but it is harder to get. Pomegranate extract is helping some people but I haven't got to try it yet. You can probably try out small quantities and not have to spend a lot to test them.

For minerals I take magnesium and zinc regularly, and potassium if I get leg cramps.

Sounds like you've already done a fair bit of homework with the things you're trying. That should put him in a good place to start healing. Also a good sign if he's able to tolerate those different things.

 

[Hope_eternal]

Quercetin and resveratrol have helped me, as well as luteolin but it is harder to get. Pomegranate extract is helping some people but I haven't got to try it yet. You can probably try out small quantities and not have to spend a lot to test them.

For minerals I take magnesium and zinc regularly, and potassium if I get leg cramps.

Sounds like you've already done a fair bit of homework with the things you're trying. That should put him in a good place to start healing. Also a good sign if he's able to tolerate those different things.

Thank you for sharing. We haven’t tried any of the items you listed except zinc., We tried it a couple days ago with dinner and he was up to 4 am. So I thought it caused insomnia but he does that sleep cycling where his sleep times change frequently so it may be just that. We will try it again but maybe earlier in the day. His doctor recommended to take it at dinner, I’m not sure why. I’m going to look into the vit/supps you suggested. Thank you so much!

 

[Emmarose47]

Happily!

The WHO classifies ME/CFS as a neurologic disease. Yes, there's lots of stuff wrong with us in many body systems, but the brain rules them all, like the One Ring.

The NIH Research Roadmap is doing a webinar on each problem area, starting with neurology. I've linked the webinar below. If/when I have the energy I will watch and try to explain. One of the presenters is Jarred Younger, from University of Alabama, Birmingham. He's a scientist, not a physician, and he is studying our brains for inflammation. He uses MRI and PET scans to document the inflammation and I heard him say in a talk (can't remember which one) that if a person doesn't have brain inflammation he/she probably doesn't have ME/CFS. The brain is that important in our illness. He also looks at long Covid and Gulf War Syndrome.

https://event.roseliassociates.com/me-cfs-research-roadmap/recordings/

@Hope_eternal The CFS specialist isn't wrong in saying ME/CFS is a brain disease. The question is whether stimulants are an appropriate treatment. If you have the energy you might the doctor to explain in more detail what he means by a brain disease and have him explain what he thinks is going wrong exactly. That will give you more information about whether the provigil would be beneficial or not. Of course you don't have to do this if you're feeling too overwhelmed. You are doing a lot already.

Thank u v much wabi sabi I'm going to come back and read this later