Many Cancer Survivors Can't Shake Pain, Fatigue, Insomnia, Foggy Brain

[Learner1]

Hi @Learner1 it reminds me of somone I talked to on Twitter, she suffered from all kinds of disabling symptoms, CFS like, following sepsis ( she was in ICU for a couple of weeks). She never recovered. She says there are,a group of them suffering from post-sepsis syndrome.

The second comment is that unfortunately, and I speak for my region, the psysicians dealing with mito diseases strictly deal with genetic mito diseases and not acquired diseases. When I had a muscle biopsy several years ago, i was dropped when my Mito DNA was normal. There,is simply nowhere to go, and we are no one's problem... unless one wants group therapy.

Infections and immune dysfunction are definitely a problem.

I agree about having nowhere to go. The wait for specialists, even if they'll see us, is far too long. Too many if us with problems and too little help.

I went to the United Mitochondrial Disease Foundation Conference this past June and saw the top miito doctors, and learned about primary and secondary mitochondrial disease. Robert Naviaux spoke there about cell danger response, toxins and mitochondrial damage from medications.

They were open to people having secondary mitochondrial disease. I spoke with a woman from the FDA whom told me I ought to be following the work being done with CFS.

So, big things are happening, but help rltoday ides elusive, and we're a long way from practically applied answers that insurance will pay for to cure us.

 

[Kati]

So, I wonder what causes the iron to go awry to cause the cancers in the article.

The IV iron infusion will cause your ferritin to be abnormal for a while.

 

[Kati]

we're a long way from practically applied answers that insurance will pay for to cure us

I am hoping things will change quickly. I need hope. The best we can do right now is to

1) make our daily living as acceptable as possible and try not to do anything that makes it worse. (Avoid over-exertion and crashes)
2) ask our political reps to fund ME research.
3) work on advocacy for awareness, education of drs, research and clinical trials. ( ME Action is a good start, it's hard work, there is no paved way, but so necessary)
4) support our researchers (give to research) / participate in studies - for instance Solve ME/CFS has a patient registry.

 

[wastwater]

I always reference Interleukin 2 because in Oslers web,a book on ME,it says they had skyhigh levels of interleukin 2
I think the body produces IL2 and would be a good explaination for ME symptoms.
I think the cytokine patterns are a bit more complex including many other cytokines like IL6 ect
Ive seen it called a few other things like t cell growth factor

 

[Crux]

However, I've had 4 iron issues over time:

1) anemia resulting from chemotherapy. I had a couple iron IVs that fixed this.

Perhaps the anemia from chemo slowed the cancer growth.

2) elevated serum ferritin (600+) for the past year, which my doctors attribute to my chronic infections. AST/ALT also rose when ferritin was highest. They're normal now and serum ferritin had been dropping as we've attacked infections.

Ferritin alone isn't diagnostic of iron overload, but even full iron panels can miss it. It's difficult to diagnose in many people.

3) compound heterozygous for the 2 main HFE SNPs. We're aware of the possibility of hemochromatosis, but this doesn't seem to be the case.

Why? I would question any doctor who believes this, especially with your results and symptoms.

"So, I wonder what causes the iron to go awry to cause the cancers in the article. There are an awful lot of variables... wondering how aberrant iron causes CFS beyond anemia or toxucity, and what causes it to go off track to begin with."

Of course, this is not a question I could answer for anyone else, but in my case, it seems that iron has deposited in many organs. I would need to get a special type of MRI to test for this. A T2* MRI.

I have had many signs and symptoms of iron overload in organs: Liver problems, cardiac, pituitary,gonads, and brain. I've also had an iron panel, with elevated Ferritin, Transferrin Saturation, low TIBC, and low UIBC.

Iron deposition can cause a variety of symptoms, including fatigue. I can't help but suspect that iron dyshomeostasis is involved with ME/CFS, but I really don't know.

Iron is the most difficult element for the body to rid ; even mercury is easier. Other metals are excreted through bile, not iron.

The Iron Disorders Institute is a good site to visit. People who've posted there have described many symptoms and test results.

http://www.irondisorders.org/diagnostic-aids

 

[Learner1]

The IV iron infusion will cause your ferritin to be abnormal for a while.

Yes, it did, but that was almost 2 years ago. Not an issue now

 

[Learner1]

Perhaps the anemia from chemo slowed the cancer growth.



Ferritin alone isn't diagnostic of iron overload, but even full iron panels can miss it. It's difficult to diagnose in many people.


Why? I would question any doctor who believes this, especially with your results and symptoms.

"So, I wonder what causes the iron to go awry to cause the cancers in the article. There are an awful lot of variables... wondering how aberrant iron causes CFS beyond anemia or toxucity, and what causes it to go off track to begin with."

Of course, this is not a question I could answer for anyone else, but in my case, it seems that iron has deposited in many organs. I would need to get a special type of MRI to test for this. A T2* MRI.

I have had many signs and symptoms of iron overload in organs: Liver problems, cardiac, pituitary,gonads, and brain. I've also had an iron panel, with elevated Ferritin, Transferrin Saturation, low TIBC, and low UIBC.

Iron deposition can cause a variety of symptoms, including fatigue. I can't help but suspect that iron dyshomeostasis is involved with ME/CFS, but I really don't know.

Iron is the most difficult element for the body to rid ; even mercury is easier. Other metals are excreted through bile, not iron.

The Iron Disorders Institute is a good site to visit. People who've posted there have described many symptoms and test results.

http://www.irondisorders.org/diagnostic-aids

I think the high dose vitamin C, curcumin, melatonin, and mushrooms did a lot to help get rid of the cancer, which was gone pretty fast. I think the chemotherapy killed a lot of things and made me anemic.

My doctor has ordered several full iron studies, and we are quite familiar with the Iron Disorders Institute.

It's the B6 deficiency anemia, and my numbers are normalizing on the large doses. B6 is used in detoxing and in several other important processes. I seem to be using it at high rates..

Thank you for your suggestions, though!

I think Fenton chemistry may have a lot to do with CFS... it's on my To Do List to find out more.

 

[Learner1]

I am hoping things will change quickly. I need hope. The best we can do right now is to

1) make our daily living as acceptable as possible and try not to do anything that makes it worse. (Avoid over-exertion and crashes)
2) ask our political reps to fund ME research.
3) work on advocacy for awareness, education of drs, research and clinical trials. ( ME Action is a good start, it's hard work, there is no paved way, but so necessary)
4) support our researchers (give to research) / participate in studies - for instance Solve ME/CFS has a patient registry.

Agreed. I'm trying to figure out where I fit in advocacy and how I can best use my story to help the cause.

I'm pretty mad that the cancer treatment triggered my CFS. And mad that billions of dollars go to poison and maim people with cancer, and so little is spent on problems like lymphedema and chronic fatigue that destroy quality of life, while little-used spent on metabolic issues that cause cancer in the first place.

 

[xrayspex]

Agreed. I'm trying to figure out where I fit in advocacy and how I can best use my story to help the cause.

I'm pretty mad that the cancer treatment triggered my CFS. And mad that billions of dollars go to poison and maim people with cancer, and so little is spent on problems like lymphedema and chronic fatigue that destroy quality of life, while little-used spent on metabolic issues that cause cancer in the first place.

I appreciate this thread, you bring up excellent points, sorry for the struggle cancer and treatment gave you. I have a good friend who had grade 3 astrocytoma 16 years ago and did go into remission after surgery and chemo. she struggles with chronic pain and fatigue that waxes and wanes. She thinks some of it is from a disc getting torn in surgery in jaw and causing trigeminal nerve problems.
I got CFS and chronic pain sort of stuff after a surgery 27 years ago, a cholecystectomy. I feel like I have PTSD from the journey I have been on since then and frustration to realize any attempts to improve my lot fall on me with little help from mainstream medicine. Pretty frustrating when you don't feel well and I don't have medical background for my education.

I try to follow similar guidelines to what Kati posted.

 

[Learner1]

I've also had an iron panel, with elevated Ferritin, Transferrin Saturation, low TIBC, and low UIBC.

Sorry I missed this before. That pattern of results is the pattern for B6 deficiency anemia.

B6 is integral to the process of using iron to make hemoglobin. The iron doesn't have anywhere to go. .. and if you are deficient, the red blood cells produced won't have enough hemoglobin, and will be funny shaped. In me, my hematocrit and ESR dropped, too.

Increasing B6 intake to 400mg caused my iron numbers to normalize. My doctor thinks I'm using a lot of B6 to get rid of toxins, and there seems to be a genetic component, too.

Maybe B6, in the P5P form will help you, too?

 

[Learner1]

I'm always curious...

Cholecystectomy... No gall bladder, no bile?
How do you escort toxins out of your body? How big is your toxic load and how much glutathione do you have? How much toxic stuff is stored in your mitochondria?

And, how do you process fats to assimilate into your cells? Does it contribute to the sphingolipid problem the Naviaux research turned up?

 

[xrayspex]

I'm always curious...

Cholecystectomy... No gall bladder, no bile?
How do you escort toxins out of your body? How big is your toxic load and how much glutathione do you have? How much toxic stuff is stored in your mitochondria?

And, how do you process fats to assimilate into your cells? Does it contribute to the sphingolipid problem the Naviaux research turned up?

Well thanks for asking Learner because actually this is the first time I recall hearing the term "sphingololipid" so will have to do some research. They also did appendectomy at same time took out gb just for "preventive" purposes( it was before research validated it has a purpose in immune system)....when I woke up from the surgery I knew I had made a mistake.......could tell things weren't right and then shortly after that my neck got injured by chiropractic that I was trying at advice of friends in some misguided indirect attempt to improve health situation even tho didnt have any significant spine complaints but was having daily headches post-surgery. Won't go into whole long thang right now but its been a carnival to sort out what did what etc I did see Dr Paul Cheney in 2008 and he said he thought some of us getting waxing waning that include spinal problems along with it because when immune system flares and more inflammation it would worsen ie the stenosis I have.

thanks tho, I will research what you brought up. I have read here and other places since then that gall bladder does tie into CFS often so even tho I didn't feel like I had CFS before surgery it could have triggered some past viral and or genetic stuff. I had gone thru a period in late teens and early 20s where I had recurring mono and or enterovirus......interestingly going on Atkins diet triggered a mono relapse, need my carbs, had gotten strept another time I tried it--that was all before the surgery. So I had epstein barr but it seemed I had beat it at the time of surgery because I was hyperactive and worked out at gym all the time.

Now I feel like the surgery was adding insult to injury. If I could know what I know now I would go back and try to see if could try alternative approaches that don't involve surgery or wait until laproscopy came out a year or 2 later. I would also never allow a chiropractor to do high velocity work on my neck/spine! I have learned in last several years that I may have Ehlers Danlos, we learned I have hypermobility. There is such an interesting cross over between structural, immune and brain issues.........

am in flare up right now that is causing worse brain fog right now, which comes and goes which i find makes it harder to hold all this info in my mind. I try to take notes, I keep meaning to put together an excellent filing system.

I have tried a lot of digestive enzymes and I don't tolerate most of them. I have tried ox bile too but problems can arise for me with that too. I have GERD of course but usually if I follow a super restrictive diet and don't eat big in 2nd half of day I can prevent big irritation with that.

 

[xrayspex]

oh and I have taken activated charcoal for years now in regard to toxins, think it helps some. But I have had tests that show dysbiosis (sp?) in past, I forget details, have done a bunch of integrative tests over years but don't tolerate meds or supplements well so trying to do what I can with nutrition of the things I can tolerate, which is short list.