Doctor visit blues…don’t know what to do

[Hope_eternal]

I would definitely check with Peter Rowe's office to see if they would take a 20 year old. I think they very well might. Like @maddietod, I'd give my eyeteeth to see him. He understands ME, he has a long standing commitment to people with ME, he is smart, thinks outside the box and has illumined some very critical aspects of the illness that others did not see, and finally, he appears to be a genuinely kind and caring man.

I’m definitely going to call today. Oh I pray we can see him. Thank you for this encouraging note❤️

 

[maddietod]

I just looked at Peter Rowe's link to eating low histamine (low-inflammatory). Through trial and error I'm already not eating or restricting almost everything on that list. I'll see what happens when I stop eating cashew yogurt and chocolate every day.

 

[Hope_eternal]

Docs, pharmaceuticals and m. E cfs urrrrr...
I have no good exp to report from the UK.
'it's a brain thing' ah OK would u kindly expand on that please?

My understanding is m. E cfs is an inflammation of the brain and spine. I certainly experience a lot of brain swelling.
I'm treating mine with medical medium Anthony Williams protocol. Bringing the inflammation down via diet and natural anti virals

We haven’t either. It’s so frustrating! I have come across his books. How are you feeling on the protocol? Have you been doing it for long?

 

[Hope_eternal]

I just looked at Peter Rowe's link to eating low histamine (low-inflammatory). Through trial and error I'm already not eating or restricting almost everything on that list. I'll see what happens when I stop eating cashew yogurt and chocolate every day.

Where did you find the link?

 

[maddietod]

Where did you find the link?

Go to the link to his clinic, above, scroll down to Patient Resources, and it's there. https://www.hopkinsmedicine.org/joh...ne/chronic-fatigue-syndrome/patient-resources in case embedded links don't make sense to you.

 

[Emmarose47]

We haven’t either. It’s so frustrating! I have come across his books. How are you feeling on the protocol? Have you been doing it for long?

The celery juice most def helps inflammation and pain.
My body feels more healthy.. A lot still to work on as inflammation in my head is bad.
It's most cert a lengthy road but feels right and hopeful.

 

[hapl808]

Every day I was told he had the flu and every day I said no this isn’t the flu!! 4 nights later they did an exploratory surgery because his stomach became extremely distended. They found he had a severed intestine 😩🥹 One year later the same thing happened. I was told the same thing and I said that the year before he had a severed intestine and presented the same way. They told me not likely because he would be in agony and wouldn’t be able to poop. He had done a poop that day so they insisted it was the flu. I protested again. They did admit him. 4 days later he was in surgery again for a twisted bowel. So I agree and know first hand, they aren’t always right and illness aren’t always textbook.

I truly wish this surprised and shocked me.

 

[Emmarose47]

How old is your son hope?

 

[Hope_eternal]

How old is your son hope?

He’s 20.

 

[wabi-sabi]

'it's a brain thing' ah OK would u kindly expand on that please?

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.

 

[Hope_eternal]

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 you. That’s a good idea.,I’ll reach out tomorrow to see if he can explain to me what he meant., I still am very leary of giving him a stimulant. Doesn’t feel right. If you stimulate a brain to want to do more when the body can’t keep up it seems a recipe for disaster. When he tries to do more he crashes without a stimulant. My brain can’t process why this is a good thing. Maybe I’m missing something. I will check with him.

 

[wabi-sabi]

My brain can’t process why this is a good thing.

Cort has an article here that explains possible benefits. https://www.healthrising.org/stimulants-chronic-fatigue-syndrome-fibromyalgia/

But the general consensus is that there might be short term benefit for cognitive problems, but there is a huge risk of worsening the push-crash cycle.

That's why it's important to know the doctor's rationale. If he can describe risks and benefits and why benefits outweigh risks- fine. If he's over focused on subjective fatigue, that's concerning. If he thinks provigil will fix the OI, that's interesting but I'd want to know about exploring other options first.

 

[Hope_eternal]

Cort has an article here that explains possible benefits. https://www.healthrising.org/stimulants-chronic-fatigue-syndrome-fibromyalgia/

But the general consensus is that there might be short term benefit for cognitive problems, but there is a huge risk of worsening the push-crash cycle.

That's why it's important to know the doctor's rationale. If he can describe risks and benefits and why benefits outweigh risks- fine. If he's over focused on subjective fatigue, that's concerning. If he thinks provigil will fix the OI, that's interesting but I'd want to know about exploring other options first.

Thank you for passing that along. I felt he was dismissive of what were trying to tell him even though he quietly listened and asked lots of questions. He was trying to figure out if the fatigue came on suddenly and that’s hard to answer because the last 3 years my son has definitely had low energy which I noticed at the start of Stelara. But the crash where he became bedridden was in Oct of 22 3 months after Covid and 6 weeks into his first year at college, So then he said let’s try a stimulant 🤷‍♀️ … I’m not even going to entertain it. I don’t feel it’s right and decided this morning we’re not going to go back to him. I much prefer the functional doctor we have to him.

 

[wabi-sabi]

I felt he was dismissive of what were trying to tell him

Uh oh, that's a red flag. I'm curious what questions he asked, if that doesn't take up too much of your energy.

Finding a good doctor is always so hard, and with a disease like ME/CFS or long COVID, you generally need a lot of them. We all want the doctors that are knowledgeable and have a good bedside manner, but it's hard to find. They more often have some combo of bedside manner and knowledge. While the ones with no bedside manner at all are beyond frustrating, the ones with a good bedside manner and little knowledge are also bad. They are likeable, so you listen to them. But that doesn't mean they are giving you good advice.

When you are assessing doctors, keep both thoughts in mind: 1) what is the bedside manner and 2) what is the expert knowledge. For example, my cardiologist so so sweet and wonderful. She tells me I'm not crazy and have a serious disease. She also tells me she doesn't know how to fix it. I'm sure you knw what a balm to the soul this is. But after seeing her I am still terribly sick. My immunologist is always in a hurry, zooming through the halls with the coat flying behind him. He's not dismissive, but there's never enough time for questions and answers. But his medication is making me better, even though I'm never quite sure why because there isn't enough time for questions. I'd sure like both qualities in one doctor!

I've also had oodles of bad doctors who were dismissive and lacked knowledge. I think those things go together. My hypothesis is that lack of knowledge causes the dismissiveness. But I've also had doctors that were very nice tell me stupid things, because there's no amount of nice that can make up for not knowing your stuff. My cardio is very clear that she cannot fix my immune system and she doesn't try. That's the kind you want.

 

[maddietod]

Did you get through to Dr. Rowe?

 

[Hope_eternal]

Uh oh, that's a red flag. I'm curious what questions he asked, if that doesn't take up too much of your energy.

Finding a good doctor is always so hard, and with a disease like ME/CFS or long COVID, you generally need a lot of them. We all want the doctors that are knowledgeable and have a good bedside manner, but it's hard to find. They more often have some combo of bedside manner and knowledge. While the ones with no bedside manner at all are beyond frustrating, the ones with a good bedside manner and little knowledge are also bad. They are likeable, so you listen to them. But that doesn't mean they are giving you good advice.

When you are assessing doctors, keep both thoughts in mind: 1) what is the bedside manner and 2) what is the expert knowledge. For example, my cardiologist so so sweet and wonderful. She tells me I'm not crazy and have a serious disease. She also tells me she doesn't know how to fix it. I'm sure you knw what a balm to the soul this is. But after seeing her I am still terribly sick. My immunologist is always in a hurry, zooming through the halls with the coat flying behind him. He's not dismissive, but there's never enough time for questions and answers. But his medication is making me better, even though I'm never quite sure why because there isn't enough time for questions. I'd sure like both qualities in one doctor!

I've also had oodles of bad doctors who were dismissive and lacked knowledge. I think those things go together. My hypothesis is that lack of knowledge causes the dismissiveness. But I've also had doctors that were very nice tell me stupid things, because there's no amount of nice that can make up for not knowing your stuff. My cardio is very clear that she cannot fix my immune system and she doesn't try. That's the kind you want.

He kept asking questions about the fatigue. When it started. He couldn’t comprehend what I was telling him and he kept getting the story mixed up so he questioned when the fatigue onset came on numerous times. He asked if he had any heart palpitations, dizziness, pain etc. My son doesn’t have any of that. He has sleep disorder, extreme fatigue/bedridden, and PEM. That’s it. When he heard that he said he wanted to try a stimulant and get a sleep study. I’m ok with the sleep study. I see the importance of sleep and getting it regulated.

I feel like this is too complicated. I’m so lost. I can’t get any answers. It’s more than difficult to get answers on if changing his Crohn’s medication is safe or not in the condition he is in. He’s due for his Crohn’s medication next week and still his gastro specialist hasn’t called me to discuss. I feel like I’m constantly in a stressed state trying to get answers. Not knowing what to do. Trying so very hard to get answers but I’m not getting anywhere. I’m trying to stay strong but it’s wearing me down. I’m back to working full time and can’t keep up with all the things I need to do for 2 chronic illness. I have a 2 page list of follows ups I haven’t gotten to. — more Tests ordering, scheduling labs, sleep machine ordering, vitamin ordering, reaching out to doctors, I’m so behind 😭. I’m going to do as much as I can this weekend but I’m 2 weeks behind on stuff and most of that is because doctors don’t get back to me and I’m so busy I can’t follow-up as often, it’s so exhausting.

Very very true about the different doctor styles. It’s hard to find one that has it all. I think most doctors are too busy because the way insurance is set up. Short appts, fit as many patients as possible, money money money!

 

[Hope_eternal]

Did you get through to Dr. Rowe?

I wasn’t able to call. I work from home Monday and plan to reach out. Trying to manage all this working is so very hard.

 

[Emmarose47]

Hope sending u thoughts..
Be careful u don't get carer burnout.. Of course u want the best for your son but imp to take care of your needs, get support etc..
I know for me as a M. E patient I can find it hard to. Ask for help as I just think, well everyone else is busy. But people like to help..

 

[ilivewithcfs]

I feel like this is too complicated. I’m so lost. I can’t get any answers.

Your situation is really tough, please take care of yourself. Sending you some good energy.

I also want to share some of my thoughts. I'm not a doctor, so feel free to just ignore them.
You said, that your son has CFS and sleep problems, and that he takes Prozac and Wellbutrin. This doesn't make sense to me. Prozac and Wellbutrin are one of the most stimulating antidepressants out there. If I learned anything during 8 years of CFS, it's that stimulants don't work out in the long run. During my illness I took unimaginable amount of different antidepressants, and slightly sedating ones were always better for my energy and my sleep (i also had sleep problems). One more important thing to consider,when you choose an antidepressant, is how antiinflammatory it is. Inflammation plays a big role in cfs, and choosing the drug,that effectively fights inflammation in the brain is important. That's why I chose fluvoxamine, it's slightly sedating (which really helps my sleep), and it has one of the strongest antiinflammatory effect. For me it works much better,than any other psych drug out there. I've learnt all of that by watching dr.Syed's medical lectures, went to my psychiatrist and insisted on fluvoxamine,and it worked out much better, than the drugs I had been taking previously.

These are just my thoughts. As I said, feel free to ignore me. Maybe your doctor has some reasons for prescribing Prozac and Wellbutrin,that I'm not aware of.

 

[Hope_eternal]

Hope sending u thoughts..
Be careful u don't get carer burnout.. Of course u want the best for your son but imp to take care of your needs, get support etc..
I know for me as a M. E patient I can find it hard to. Ask for help as I just think, well everyone else is busy. But people like to help..

Thank you 🙏 yes it can be hard to ask. I know the feeling. And you’re right, most people like to help. I need to get better about delegating some of the tasks to others. I’ve been let down in the past when I’ve asked for help and was told they would help but in the end they didn’t follow through so I think that’s why I try and do a lot of it myself. I appreciate your message thank you