• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

What is worth the money?

Messages
42
This illness can be expensive. I am trying to decide if a few things are worth the money or not.

I've never done 23andme or 24 hr cortisol saliva test, (really never done anything but mainstream MD testing). I'm leaning toward doing 23andme because I'm adopted and have no medical history.

I've also had to cut out all supplements due to a tight budget. I don't feel fantastic when I take them so I'm not sure they are worth the expense. (Although I do feel slightly better than I do now with higher dose of CoQ10, b complex, and magnesium).

I tried a few sessions of FAR sauna but had to quit because insurance didn't cover it.

I've never been to a CFS "specialist".

So I guess my questions are
1) If I were going to start throwing some money at this illness, what is worth it and what isn't that you have tried?

2) if money were no object, what would you spend it on to attempt to improve your health?

3) Is money better spend on things like cleaning service than chasing the elusive "cure" that doesn't happen?
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
I'd save your money. Medical science does not know what CFS is as of yet. Testing by 23andme seems to be pointless. What would you do with the info if you had it? And does the info really mean anything?

I haven't had this testing done, but think that Dr/researcher Nancy Klimas is requesting this type of info from patients?

Does anybody know if the testing is allowed by Big Brother now? Because, you know they are all so smart, and love innovation! LOL

GG
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
I've never been to a CFS "specialist".

a good one of those I personally think is important as you could have a like illness which has been missed, you should get confirmation from at least one specialist in this.

I had my 23andme testing done back when they gave full health reports which was extremely useful for me.

then running my raw data throu geneticgenie or whatever its called for my methylation mutations to was very useful to me as it then explained a deficiencies I had and a reaction id had to something else. you still get raw data from 23andme you could use with a program to get some info.

if you are adopted and want to learn more about your family, you'll be amazed how many family members come up in that area of 23andme. I found both second cousins, third cousins to which I then was able 2 find them in my family history books and even my uncle showed up their
 
Messages
2,562
Location
US
I think 23andme is worth it for most people, but not if you can't even afford supplements.

There is a new place that will do free genetic testing if you give them research data. https://genesforgood.sph.umich.edu/

It depends, but I think most of us regret spending so much on medical tests and treatments.

Sometimes it's better spent on a power wheelchair, moving to a place without mold, moving to be nearer to family, moving to a cheaper place so we aren't having as many money problems later, etc.

Are you still trying to get evidence for your disability case?
 
Messages
42
I think 23andme is worth it for most people, but not if you can't even afford supplements.

There is a new place that will do free genetic testing if you give them research data. https://genesforgood.sph.umich.edu/

It depends, but I think most of us regret spending so much on medical tests and treatments.

Sometimes it's better spent on a power wheelchair, moving to a place without mold, moving to be nearer to family, moving to a cheaper place so we aren't having as many money problems later, etc.

Are you still trying to get evidence for your disability case?
Thanks for the link on free testing.
I had my hearing very recently and am waiting for the decision. My lawyer did an excellent job and feels optimistic about a favorable decision based on the judge's comments at the end of the hearing. If I am blessed with an income again after 3 years, I am trying to be wise about how I spend it.
 
Messages
42
a good one of those I personally think is important as you could have a like illness which has been missed, you should get confirmation from at least one specialist in this.

I had my 23andme testing done back when they gave full health reports which was extremely useful for me.

then running my raw data throu geneticgenie or whatever its called for my methylation mutations to was very useful to me as it then explained a deficiencies I had and a reaction id had to something else. you still get raw data from 23andme you could use with a program to get some info.

if you are adopted and want to learn more about your family, you'll be amazed how many family members come up in that area of 23andme. I found both second cousins, third cousins to which I then was able 2 find them in my family history books and even my uncle showed
up their
I wonder sometimes if this could possibly be something else, but I have no idea who I would even see. I feel pretty confident it's not though.

I need to read more to understand the methylation issues better and how these test results would impact treatment.

Hmm. Glad you pointed that out. That could be more info than I was prepared to receive. I was thinking it would be nice to know a little genetic issues. Didn't know I could also be finding long lost relatives.
 

hellytheelephant

Senior Member
Messages
1,137
Location
S W England
The best money I have spent since getting really sick again is to see a counsellor- NOT I hasten to add, because I think ME is a psychological illness, but because it is so hard living with the pain, limitations and disability this illness brings. It is also good to have someone to vent at once a week without talking the ears off your caregivers/partner/friends/family ( who may just not be able to understatnd an illness they have not had themselves)
 

PatJ

Forum Support Assistant
Messages
5,288
Location
Canada
I've spent a LOT of money on supplements. Even though 90% haven't helped, or have made me worse, I have found some that have helped improve my quality of life enough that the money spend finding them has been worth it. As a bonus, the ones that help me are usually inexpensive.

The problem with CFSers is that we usually have such varied reactions to supplements that we need to try for ourselves to see what works. In my case, my life would be worse without:

* Low Dose Naltrexone which helps with mood stability, sleep, and libido

* Liposomal Vitamin C (home made) - increases stress tolerance

* Betaine HCL with pepsin - vital for digesting protein since I have such low stomach acid. Taking enough (based on the amount of protein in a meal) means I can eat an appropriately sized meal and not feel exhausted afterward.

* Methyl B12 - I'm vegetarian so need this to prevent deficiency but it has been useful for many with CFS (try a forum or Google search for the ways it has helped people)

* Methylfolate - better mood

* Brewer's yeast - reduces light and sound sensitivity, better mood and reduced brain fog

* Sunflower lecithin powder - reduces light sensitivity (for short periods)

* D-Ribose - helps me to recover more quickly from energy draining activities like taking a shower

* Melatonin (1mg time release), and either Nighty Night tea or Organic India Peaceful Sleep to improve sleep

* Magnesium citrate - eliminates mild leg ache at night
 

CFS_for_19_years

Hoarder of biscuits
Messages
2,396
Location
USA
If you are awarded a disability payment, and it leaves you enough money to spend on supplements, you might consider seeing a naturopath. They can prioritize what can/should be focused on. Some naturopaths carry expensive supplements, so I'd let them know that you'd like to find less expensive alternatives.

If you still can't afford many supplements even with a disability award, I'd recommend sticking to the bare minimum, which for me would be a good multivitamin, calcium, magnesium, fish oil and melatonin.
 
Messages
42
The best money I have spent since getting really sick again is to see a counsellor- NOT I hasten to add, because I think ME is a psychological illness, but because it is so hard living with the pain, limitations and disability this illness brings. It is also good to have someone to vent at once a week without talking the ears off your caregivers/partner/friends/family ( who may just not be able to understatnd an illness they have not had themselves)
I saw a counselor when I first had to leave my job. She was invaluable in helping me deal with that loss.
 
Messages
42
I've spent a LOT of money on supplements. Even though 90% haven't helped, or have made me worse, I have found some that have helped improve my quality of life enough that the money spend finding them has been worth it. As a bonus, the ones that help me are usually inexpensive.

The problem with CFSers is that we usually have such varied reactions to supplements that we need to try for ourselves to see what works. In my case, my life would be worse without:

* Low Dose Naltrexone which helps with mood stability, sleep, and libido

* Liposomal Vitamin C (home made) - increases stress tolerance

* Betaine HCL with pepsin - vital for digesting protein since I have such low stomach acid. Taking enough (based on the amount of protein in a meal) means I can eat an appropriately sized meal and not feel exhausted afterward.

* Methyl B12 - I'm vegetarian so need this to prevent deficiency but it has been useful for many with CFS (try a forum or Google search for the ways it has helped people)

* Methylfolate - better mood

* Brewer's yeast - reduces light and sound sensitivity, better mood and reduced brain fog

* Sunflower lecithin powder - reduces light sensitivity (for short periods)

* D-Ribose - helps me to recover more quickly from energy draining activities like taking a shower

* Melatonin (1mg time release), and either Nighty Night tea or Organic India Peaceful Sleep to improve sleep

* Magnesium citrate - eliminates mild leg ache at night

I will check into these. I've had minor improvement in d-ribose. Magnesium citrate is super helpful for me. I used to take it regularly, and will probably start using it again. I will check out the others. The daily crushing fatigue doesn't seem to be alleviated by anything, though, and it is my most severe symptom.
 
Messages
42
If you are awarded a disability payment, and it leaves you enough money to spend on supplements, you might consider seeing a naturopath. They can prioritize what can/should be focused on. Some naturopaths carry expensive supplements, so I'd let them know that you'd like to find less expensive alternatives.

If you still can't afford many supplements even with a disability award, I'd recommend sticking to the bare minimum, which for me would be a good multivitamin, calcium, magnesium, fish oil and melatonin.

I have been considering seeing one. If I am awarded disability, it will be a game changer because we are surviving without it. We have managed quite well but I have had some massive medical bills from a hospital visit that, combined with a loss of my income, have made the last several months more difficult, so I dropped the supplements. I will resume them ASAP.

I guess I made my finances sound pretty bad. I'm fine. Blessed, really. I just hate to waste money when there is no payout in quality of life. It would make a huge difference in my peace of mind to pay someone to come in and organize my house and do deep cleaning I can't do. Yet I have bought hundreds of bottles of supplements, paid tons of copays, spent countless hours in doctor's offices wasting precious money chasing health and then am let down when I make no progress.

I'll give you a perfect example. My MD, who is so wonderful to try anything to help me, sent me to an infectious disease Dr. a few months ago. He walks in the door and asks why I "think" I'm there. I explain that I have chronic fatigue, I've had a sore throat for 3 straight months, have been to the ER, and just am miserable.

He says, "There are 2 kinds of doctors, those who believe in chronic fatigue and those who don't. Guess which one I am?" Mentally, I think I would have been better off to treat myself to a housekeeper for an hour than to pay his office visit.
 
Messages
42
I would have been tempted to reply:

"There are two kinds of patients, those who still pay the medical fees even when the doctor is incompetent, and those who don't. Guess which one I am".

If only I had been able to think that quickly!! I was so mad at myself for sitting through the rest of the appointment. I wish I had stood up and walked out the door the minute it came out of his mouth. I was too stunned to respond. It has been a long time since I had experienced that attitude, and I can't remember it ever being so blatant and rude.
 

Hip

Senior Member
Messages
17,801
If only I had been able to think that quickly!! I was so mad at myself for sitting through the rest of the appointment. I wish I had stood up and walked out the door the minute it came out of his mouth.

I guess most of us, when we first develop ME/CFS and put ourselves into the supposedly caring hands of our doctors, are probably not aware that there is this incredibly dismissive attitude regarding ME/CFS to found among many medical professionals.

We only learn about that years later, when we read more on the subject. And it is only then that we wise up to the situation, and then perhaps become more politically active, and stand up more for our rights.

So I think most patients would not give a dismissive doctor the cutting response that the doctor really deserves.
 

PatJ

Forum Support Assistant
Messages
5,288
Location
Canada
The daily crushing fatigue doesn't seem to be alleviated by anything, though, and it is my most severe symptom.

I found that once I became partly bedbound that I had more energy. Not from lack of moving around but from lack of being upright. I had no idea that orthostatic intolerance was draining my energy and affecting my mood so much. One of the few upsides of being partly bedbound now is that I am less irritable and don't have anywhere near the crushing fatigue that I used to. Being horizontal more often has benefits in my case since my BP is so low, and gradually lowers the longer I am upright.

Assuming you aren't already bedbound, then you might want to try a day where you stay upright for an hour, then lie down for an hour, and cycle like that throughout the day to see if you feel better when lying down, and overall.

"There are 2 kinds of doctors, those who believe in chronic fatigue and those who don't. Guess which one I am?" Mentally, I think I would have been better off to treat myself to a housekeeper for an hour than to pay his office visit.

There are two kinds of doctors: those who rely on lack of investigation and ignorance based belief; and those who rely on inquiry, evidence, and reasoned conclusions. Guess which one he is?
 

Gingergrrl

Senior Member
Messages
16,171
My thought was, there are two kinds of doctors: ones who possess a human soul, inquisitive mind, and have a desire to at least try to help their patients and ones that are mean spirited bastards who don't actually care if their patients live or die as long as they get paid.
 

JAH

Senior Member
Messages
497
Location
Northern California
Does anybody know if the testing is allowed by Big Brother now? Because, you know they are all so smart, and love innovation! LOL

GG

Yes, they are still doing this testing. "Big brother" doesn't allow 23and me to give medical advice/ interpretation of the results. Considered unproven, specious by the FDA. 23andme trying to work that out...

I vote for cleaning services. Medical qi gong, if you can afford it. Though that gives me only temporary relief. Supplements / docs/ tests/ 23andme all a waste of money for me. I only keep doing it because I can and feel so sick that I should be seeing a doctor, you know what I mean? Hold out for real treatment.

JAH
 

PatJ

Forum Support Assistant
Messages
5,288
Location
Canada
My thought was, there are two kinds of doctors: ones who possess a human soul, inquisitive mind, and have a desire to at least try to help their patients and ones that are mean spirited bastards who don't actually care if their patients live or die as long as they get paid.

I think you've just discovered a simple method for detecting hard-core narcissists. Although, to be fair, some (many?) doctors start out well meaning and compassionate but are ground into apathy by the system they work in.