2 types of ME/CFS? A short, informal poll

[PennyIA]

IBS - Sans Constipation - which is still IBS no matter how much my doctor tries to tell me it isn't - No, it came later

Sinus Problems - Yes

Autoimmune disease - No

MCS? Yes

LDN - Haven't tried

 

[melamine]

Did you have IBS before or early on in your symptoms?

Do you have sinus problems?

Do you have autoimmune disease also? (Perhaps I could say "another" but that's a bit loaded)

Do you have MCS?

If you have tried it, did you get lasting benefit from LDN?

I will be interested to see responses to your poll!

1. Yes
2. Yes
3. Yes, much later in the course of disease and after more environmental insults and infections. I also have HLA genes but no obvious family history of autoimmune disease. I would call the autoimmune aspect of it just that, an aspect rather than a definable autoimmune disease in its own right.
4. No, but I have developed sensitivities to supplements and some drugs. Not sure if that's related.
5. I am just starting LDN and cannot yet say.

 

[ebethc]

Did you have IBS before or early on in your symptoms? YES

Do you have sinus problems? YES

Do you have autoimmune disease also? (Perhaps I could say "another" but that's a bit loaded) NO - but I have lots of genetic markers, so maybe a an AI disease that's not defined yet.

Do you have MCS? YES (not yet confirmed by a doctor)

If you have tried it, did you get lasting benefit from LDN? HMMMM.... LDN helps, BUT it's not a panacea... possibly, I need to fix other things before getting more benefit out of LDN.

 

[MeSci]

Shame this isn't a formal, structured poll using the poll template. It would be good to be able to see how people compare.

 

[bertiedog]

Did you have IBS before or early on in your symptoms? Yes but got rid of it but not eating gluten

Do you have sinus problems? No

Do you have autoimmune disease also? Yes, Hashimotos

Do you have MCS? No but don't like to be near paint or perfume

If you have tried it, did you get lasting benefit from LDN? I could only tolerate 1 mg and it didn't make any major difference

What has got me really quite well, is 7 months of Cowden protocol for Lyme and co-infections. I am now averaging about 8800 steps daily with excellent energy in my legs almost all the time as long as I have some rests in between.

Pam

 

[ebethc]

Did you have IBS before or early on in your symptoms? Yes but got rid of it but not eating gluten

Do you have sinus problems? No

Do you have autoimmune disease also? Yes, Hashimotos

Do you have MCS? No but don't like to be near paint or perfume

If you have tried it, did you get lasting benefit from LDN? I could only tolerate 1 mg and it didn't make any major difference

What has got me really quite well, is 7 months of Cowden protocol for Lyme and co-infections. I am now averaging about 8800 steps daily with excellent energy in my legs almost all the time as long as I have some rests in between.

Pam

Has giving up gluten improved your thyroid issues?

 

[SOC]

Shame this isn't a formal, structured poll using the poll template. It would be good to be able to see how people compare.

True, but he wants to know the combination each person has, not just how many people have each symptom, so I don't think it's possible to do what he wants with the poll template we have. From a crude review of this thread, there would be no clear pattern in Y and N if we only looked at each individual symptom -- half would say Y and half would say N to each one. The only way to get a rough picture of what is wanted here is to ask something like, "Do you have more Y's or more N's to this collection of questions?" That might pick up the pattern he is trying to tease out.

 

[cigana]

Did you have IBS before or early on in your symptoms?
Yes.

Do you have sinus problems?
Yes.

Do you have autoimmune disease also? (Perhaps I could say "another" but that's a bit loaded)
No (but I'm male)

Do you have MCS?
No

If you have tried it, did you get lasting benefit from LDN?
No (I have tried it)

 

[amaru7]

As kdm has put it, there are as many different subgroups as there are patients, watch from 7:24
CFS is not a homogenous disease at all

To your poll, the answer would be no to all questions

 

[bird78]

1. Yes
2. Yes
3. Yes
4. Yes
5. Not tried

 

[Antares in NYC]

Ok stevesayshi, here you have my answers:

- Did you have IBS before or early on in your symptoms?
No, but they evolved over time, and got extremely bad at times, still ongoing and worsening with each onset.

- Do you have sinus problems?
Yes, constant, even after having sinus surgery to help make it better. To this day, very few things relieve the nasal/sinus congestion (certain antifungals seems to help more than standard sinus sprays).

- Do you have autoimmune disease also?
Not sure how to answer this. On the tests, I don't show specific markers for auto-immune diseases, yet if I take any supplements intended to increase or activate the immune system (echinacea, astragalus, Del-V), I get the worst physical reactions, including severe IBS that often includes bleeding. I have to avoid immune-boosting supplements and immune modulators just like people with auto-immune issues do.

- Do you have MCS?
If I do, it's mild. I have not done specific tests for MCS. Maybe I'm not paying attention.

- If you have tried it, did you get lasting benefit from LDN?
I have not tried it, but my doctor just wants me to start using it. I may be able to report back in a few months on this one.

Hope it helps with your research.

I wanted to update my answers after trying LDN for a few months. Here we go:

1. No IBS before CFS
2. Yes to sinus problems, since my teenage years
3. Yes, I have been diagnosed with severe malabsorption issues and pernicious anemia caused by parietal cell antibodies. So to add to my litany of problems, autoimmunity is now another thing to worry about.
4. Not sure if I have MCS, maybe mild.
5. Nope, several months on LDN didn't do a damned thing.

Hope it helps.

 

[valentinelynx]

Did you have IBS before or early on in your symptoms?

Do you have sinus problems?

Do you have autoimmune disease also? (Perhaps I could say "another" but that's a bit loaded)

Do you have MCS?

If you have tried it, did you get lasting benefit from LDN? not tried yet

1. No, I developed lactose intolerance not IBS (lactose intolerance resolved after a couple of years)
2. No, just allergies
3. Maybe, but no evidence of auto antibodies
4. YES MCS particularly early on
5. Never tried it, need to take opioids.