Giving up

[renski]

living with chronic neurological symptoms and fatigue, I’ve tried different supplements but have just made things worse, don’t have any real good help here in Australia. I have severe issues with gut, methylation, low minerals etc but everything I try seems to be a dead end. Have done a ton of functional medicine testing (Nutreval etc) and blood work. Find it hard to tolerate most supplements but don’t even know if I’m on the right track. Everything is just pointless

 

[Howard]

@renski

I'm sorry you are having such a difficult time. I feel as though I can relate far too easily to your current predicament.

I hope this is okay, but I'd like to share briefly regarding my own personal circumstances.

Three years ago I also had severe gut issues, poor reactions when ingesting supplements or vitamins, and a distinct inability to think clearly, not to mention my being overwhelmed by any and all external stimuli.

It seems as though these experiences are different for everybody. But what I did, and the only thing that's seemed to have helped was vastly altering my diet and learning how to meditate daily, quieting my mind.

Gradually over the course of the past three years I've improved to the extent that I can actively participate in this forum, I can manually write notes in a notebook, I can sit up for short periods of time without blacking out, and I have hope for today, for right now.

Eckhart Tolle’s book “Practicing the Power of Now” has been quite beneficial, despite the fact it took nearly six months to read through one hundred and forty odd pages!

Again, I don't mean to minimize your circumstances, but I'm merely sharing in a way that I would want others to share with me, by offering encouragement.

 

[Heartl]

@renski

I'm sorry you are having such a difficult time. I feel as though I can relate far too easily to your current predicament.

I hope this is okay, but I'd like to share briefly regarding my own personal circumstances.

Three years ago I also had severe gut issues, poor reactions when ingesting supplements or vitamins, and a distinct inability to think clearly, not to mention my being overwhelmed by any and all external stimuli.

It seems as though these experiences are different for everybody. But what I did, and the only thing that's seemed to have helped was vastly altering my diet and learning how to meditate daily, quieting my mind.

Gradually over the course of the past three years I've improved to the extent that I can actively participate in this forum, I can manually write notes in a notebook, I can sit up for short periods of time without blacking out, and I have hope for today, for right now.

Eckhart Tolle’s book “Practicing the Power of Now” has been quite beneficial, despite the fact it took nearly six months to read through one hundred and forty odd pages!

Again, I don't mean to minimize your circumstances, but I'm merely sharing in a way that I would want others to share with me, by offering encouragement.

That same book helped me sooo much! I’m pulling it out again, I need to start practicing again...thank you

 

[Timaca]

@renski ~ I'd like to encourage you that it is possible to see improvements. I've been sick since 2003, and while I definitely still have CFS, I am MUCH better than I used to be. Various antibiotics and antivirals have helped me, and like Howard, changing my diet has helped too.

I went on an elimination diet several years ago, and now I am eating whole foods, plant based (vegan), gluten free (also corn free, oat free, peanut free). (I do hope to retest corn soon....) I will eat some fresh fish on occasion. Taking an algae based DHA / EPA supplement seems to have helped both brain clarity and energy.

Some probiotics have helped my gut issues. I have a lot of neurological issues too, but I can say that cutting out the wheat has improved that. (At least when I tested wheat I sure got worse!)

This is a very difficult illness, and we are all different and what helps someone may not help you. I send you wishes for improvements soon!!!

@Howard ~ How did you alter your diet? I'm from Arizona also!

Best,

 

[taniaaust1]

sorry to hear this renski. Im in Australia to. Diet is one thing which has helped me with a few (of the heaps) of symptoms I have. If you havent experimented with different diets yet, give that a go. Of cause it wont cure you of ME but if you can find something to help even one of your symptoms that is always good.

When you say you have no good support. I dont know if you are just refering to medical support or home/care support. Be aware that one can get NDIS support for ME/CFS, Ive been granted quite lot though Im struggling to get that support implimented right now (which others with other illnesses are having trouble with too).

 

[percyval577]

I also felt such horrible that, then stumbeling around again with my slow information processing, I have found an influence, actually by accident. It´s low manganese, now even not too much fat and avoiding sugar.
Luckily I have also figuered out some things that are not to be avoided but to search for, making it a bit more interesting: tryptophane only together with gaba and/or tyrosin. And then chromium, believe it or not, and it´s very strong. I took a part of a socket wrench (which is covered with it), put it in a cup and then boiling water above it. The heat shock would leach chromium atoms. From this water I took a bit less than a teaspoon and put in another cup, and I often dipp a knife inside and get some chromium atoms in my drinks. The nucleus caudatus is happy.

 

[S-VV]

@Timaca what antibiotics and antivirals helped you the most? I'm currently taking Famvir + Valtrex but I'm thinking of switching to antirretrovirals

 

[Timaca]

@Timaca what antibiotics and antivirals helped you the most? I'm currently taking Famvir + Valtrex but I'm thinking of switching to antirretrovirals

Antibiotics were the first thing I was on (IV rocephin)...and after 4 months or so (this was back in 2005) I felt MUCH better. The picc line was pulled due to a fungal infection and all my symptoms came back. Since then I've been on other antibiotics as well as valcyte. Currently I am on Valtrex (generic) twice a day. A year ago I tried to reduce the dose to once a day and that did not work.

Do you feel like the Famvir and Valtrex are helping you?

Best,

 

[Howard]

Hello @Timaca

My primary diet change was eliminating high fructose corn syrup / simple sugars (I've also been gluten and dairy-free since 2000).

Next, I've done my best to eliminate simple carbs, but I'm trying to find ways to further restrict my intake.

Potato-based starches almost immediately make me feel unwell, exhausted, super tired and overheated… while sometimes contributing to brain fog.

Tart cherry juice has seemed to have an overall positive effect as well, mostly in regards to sleep quality.

It's by no means groundbreaking, and I'm sure I'm missing out on a wide array of nutritional options, but I have my specific current diet listed on my profile information page. As someone here suggested, I need to find ways to diversify my diet.


In regards to Arizona, we've been gifted with clouded skies and abundant precipitation of late, haven't we? I enjoy the idea of records breaking, despite merely witnessing October's rain through sliding doors of glass.

Thank you for asking,
H

 

[knackers323]

@Howard what are your theory's on why the potato starches have this effect on you?
I get the same issue, the hot feeling is very quick to come on like you also

 

[Howard]

@knackers323

I have no idea, besides this from a recent post by @Moof -

"... I didn't even know it was possible to have an intolerance to potatoes, so I looked it up; it turns out that it's fairly common. I stopped eating potatoes, and within four days, all my miserable IBS symptoms (which included feverishness and worse than usual POTs) disappeared completely. I can still eat other nightshade foods such as tomatoes, even though I had a true allergy to them when I was a child."


This seems reasonable, or perhaps it's the rapid breakdown of simple carbs?

Sorry, don't know how to link ....
Annoying stomach discomfort and brain fog

 

[Moof]

Potato-based starches almost immediately make me feel unwell, exhausted, super tired and overheated… while sometimes contributing to brain fog.

Same here! The hot sweats, weird sleepiness and general feeling of unwellness don't immediately make you think of a food intolerance, which is why it took me a long time to fathom it. Luckily it's easy to test yourself for it, by abstaining and then doing a food challenge a few weeks later – and it's actually worth repeating that at least twice, to make sure. If it does turn out you're intolerant, the list of foods that have potato starch hidden in them is infuriatingly huge (even some ice cream, ffs!)

 

[Wishful]

I too have tried many things with no effect, and a few that provided just a temporary improvement. However, I did manage to find two things that work reliably and have made a huge improvement in my quality of life, so it is possible to find things that work. Giving up on experimenting means giving up on the chance of finding something that will help.

As others have said here, diet can have a big effect on ME symptoms. I've discovered quite a few foods and nutrients that make my symptoms worse. Finding out which foods you are sensitive to can make a big difference in how you feel. My latest discovery: onions. I began feeling worse in the last week or so, and the cause wasn't obvious. Changing what I ate and what activities I did pointed to onions, which I had started using again in soup (it's coming into winter here). Onions didn't bother me last year, but this year they do.

For others here, potatoes are on my avoid list too, and I'm pretty sure it's the solanine damaging mitochondria. I was also very sensitive to tomatine for awhile, though I can tolerate a bit of BBQ sauce now. Then there's brassicas (gotrogenic) and lots of herbs&spices (peroxynitrie scavengers). I also had to give up foods with sugars or easily-digested starches, because those give me insomnia. I had to give up meat for a while, but supplemental l-carnitine fixed that.

My diet is quite restrictive now, but at least I'm avoiding worse ME symptoms.

I'd suggest ignoring functional medicine, blood tests, or anything else that is based on theories of what you should eat or take. No one knows what is malfunctioning in ME, so no one knows what should work. The only one who can tell you what will make your symptoms better or worse is you, by trying different things and keeping track of how you feel. No professional can do that for you at this point.

@Moof , some ice cream might have potato starch, but almost all of them have sugar.

 

[S-VV]

Antibiotics were the first thing I was on (IV rocephin)...and after 4 months or so (this was back in 2005) I felt MUCH better. The picc line was pulled due to a fungal infection and all my symptoms came back. Since then I've been on other antibiotics as well as valcyte. Currently I am on Valtrex (generic) twice a day. A year ago I tried to reduce the dose to once a day and that did not work.

Do you feel like the Famvir and Valtrex are helping you?

Best,

Good question... Within one hour of taking Valtrex, my sore throat dissapeared. This is in complete opposition to most stories of recovery after months of continuous use.

Then there is the pridgen protocol, which uses Famvir for fibro.

While I don't think they are making a huge improvement, they may be stopping further worsening, so for now I'll keep taking them.

I hope you can find some combination of anti-(X) that gives you relief!

 

[renski]

Thanks for all the kind responses!

 

[renski]

@Timaca what antibiotics and antivirals helped you the most? I'm currently taking Famvir + Valtrex but I'm thinking of switching to antirretrovirals

@S-VV Curious what these are treating you for?

 

[renski]

sorry to hear this renski. Im in Australia to. Diet is one thing which has helped me with a few (of the heaps) of symptoms I have. If you havent experimented with different diets yet, give that a go. Of cause it wont cure you of ME but if you can find something to help even one of your symptoms that is always good.

When you say you have no good support. I dont know if you are just refering to medical support or home/care support. Be aware that one can get NDIS support for ME/CFS, Ive been granted quite lot though Im struggling to get that support implimented right now (which others with other illnesses are having trouble with too).

@taniaaust1 Mostly medical support, I've found naturopaths and integrative medicine doctors but none are really familiar with ME/CFS that I can tell

 

[ahmo]

@renski There are several links in my signature for help w/ methylation. May be helpful. I had to do all my research and treatment protocols alone. It paid off, but took 5 years to get things sorted. My ME isn't gone, but there was a lot I could do to get a better quality of life. good luck.

 

[Research 1st]

living with chronic neurological symptoms and fatigue, I’ve tried different supplements but have just made things worse, don’t have any real good help here in Australia. I have severe issues with gut, methylation, low minerals etc but everything I try seems to be a dead end. Have done a ton of functional medicine testing (Nutreval etc) and blood work. Find it hard to tolerate most supplements but don’t even know if I’m on the right track. Everything is just pointless

Renski. I'd double check your diagnosis. No one here actually knows they have ME or CFS as there's no agreed upon test. There's literally thousands of reasons you could have fatigue and neuro symptoms. Just because the obvious ones have been ruled out by your doctor, doesn't mean they haven't missed less obscure ones. To be quite honest it's very common in PWME CFS to return with stories usually with the message ''turned out I had'' X,Y,Z and years later. For example, it took me years to diagnosed with POTS because I was misdiagnosed with panic disorder by emergency room doctors who refused to refer me to have a TILT table test (to diagnose it). I realise though you may not have something obviously externally wrong with you, and this is the general curse PWME PWCFS are plagued with, as we don't have something (usually) others can see, hence we are disbelieved as 'over thinkers', especially if we're intelligent people who do, ironically, think a lot. As do doctors.....

Until scientists make a break through (independent scientists funded by charity donations, not government lead) all we can do is hope the diagnosis of ME CFS we are given is 100% correct which of course, is insane (having to hope a medical diagnosis is accurate), but this is what the American CDC planned for us all in 1988. The CDC shipped this 'CFS' idea all over the world to allied countries, like UK/Australia and others who went down the psych route to save money - which is why you have no treatment, and none of us either. No matter what country we live in, none of us receive treatment. It's truly terrible but we must struggle on, or 'they' win.

What I'd do is consider your situation. Have you been sick 1 year or 30 years. I can't give you a sermon or dictate to you either way, but if you've been sick decades then yes the situation is generally hopeless (unless you have money to buy different attempts at experimental therapy). However, If you've been sick a much shorter time, if you rest and optimise your nutrition, get better sleep a reduce stress and most importantly, exposure to infection then you may well get a lot better or at least stabilise your illness. What you want to do is minimise inflammation and brain inflammation - one feeds off the other. If you're sick with this illness, the more exercise you do when unable to do this (GET), the more you increase existing low-grade inflammation. This leads to further immune activation and relapse. Hence the idea we should all use CBT/GET to reduce symptoms of ME CFS is scientifically invalid.

What we know is no one told they have ME CFS will universally have the same condition when the news comes one day, that scientists think they've cracked it. It's all guess work until you can escape the diagnosis, or at least 'add-on' another diagnosis the medical profession will accept is genuine. Depending on how sick you are, and if it's appropriate I'd rule out every possible reason you haven't been tested for for your disabilities. Then only if it's appropriate I'd try and rule out secondary conditions that we tend to develop as a group of people, subsets here, not all of us: POTS, Inflammatory disorders like PMR/Lupus, Allergies/Asthma, Seizures, bowel problems, inappropriate sinus tachycardia (IST). It's also sensible to try and find a non hostile psychologist/counsellor if you feel the need for one. I understand this all costs money, and mostly, we are denied everything we are talking about unless we are stereotypical 'Americans' blessed with private health care, or our parents are in full time work driving Range Rovers. Some people do have this life, and full power to them, they can get help more than us and this is just the lottery of life.

What do try and do to stay sane, is look at what I might have on top of ME CFS, what PWME CFS tell me they have online, read the research on 'CFS' and go searching and try and link my strange sets of fluctuating in severity symptoms, that are cyclical in nature - to known conditions. That's the only way I found out about POTS for example, and later MCAS (Mast Cell Activation Syndrome) which is almost impossible to diagnose in the community and still denied by most doctors who confuse it with Mastocytosis.

Staying positive: If you want to try and quick fix and can afford it and tolerate it, I would try taking the supplement Ubiquinol Kaneka QH which is an expensive but more bioavailable form of Q10. I found normal Q10 useless so switched to the costly variant at 200mg a day, and found it beneficial at 400mg, At 800mg it made me feel sick though. After a month of taking that I developed more stamina. To maximise Q10 and ATP you also want to consider taking something with Q10 like R Lipoic Acid. I tested my blood levels and it was low. I also had extremely low levels of Iodine, which explained even with normal TSH/T4 Thyroid tests, my body was like someone hypothyroid.

I always 'test drive' my supplements too. I stop taking them for like a month and within weeks get worse and worse and end up desperate within 3 months of zero supplements, so they can have some effect if your body needs them of course not just because others take them and they feel better! So there are a few supplements people take they find really useful. Many take B vitamins, Vitamin D, Vitamin C, Zinc and find them useful to maximise their baseline level of function.

If you can't tolerate vitamins and similar, make sure you start off at a low RDA 100% dose and work up. Often patients takes mega doses of vitamins at the first dose and feel awful and get scared off. Tapering the dose right down can help as can taking them at the right time, taking them too late in the day will keep you awake. I'd make yourself a little list of what supplements reduce oxidative stress in the body, and also try and boost your immunity.

If you can maximise your body then you brain should benefit a lot from this and you may feel less anxiety, depression, stress and even get more energy to do more in terms of being able to read, type etc. It's all down to chance really, if you can find something you're deficient in, and when fixing this, you can truly feel the difference. From spending thousands on tests, I've found myself to be deficient in many things, especially essential fatty acids (EFA), I also have almost zero 'Short Chain' Fatty Acids on testing you can also test for Very Long Chain - but as usual, this all comes down to money sadly. It now looks like from the latest research in ME CFS on metabolism, then Fatty Acids are likely depleted in ME CFS as they're be used up as an energy source, also amino acids in women especially and muscle in males.

To try not to get so fed up with the horrendous situation, try and get interested in the latest research and within reason, see if you can read messages here or post on here about ideas of question you have. This can help you feel a little less down about the very real situation we find ourselves in, something that is not our fault. So somehow when possible, we need to stick up for each other and try and remain motivated and positive, even if our own personal world is crumbling, somehow, we need to try and hold on and hope for better times, by chasing scientific knowledge. if we can begin to understand just a small amount about why were are sick personally, then the world can be a little less scary.

 

[Wayne]

I found normal Q10 useless so switched to the costly variant at 200mg a day, and found it beneficial at 400mg,

Hi @Research 1st,

Remarkable post you made. Thanks for sharing your thoughts; you wrapped up a lot of perspective in just one post, which often takes people with CFS years to begin to grasp.

Re: the unbiquinol and CoQ10, I'm currently experimenting with that as well. Interestingly, I read that even though unquinol is more bioavailable, some people actually do better on the less expensive CoQ10 form. I started out with uniquinol and didn't notice much from it. I'm now taking the CoQ10, and am not noticing much from that either. So I'll start slowly upping my doses to see what comes of this experiment (just one of literally thousands it feels I've tried).

Thanks again for your post!