Diary of another ME/CFS patient: natural therapies

[researcher]

Hi,

As I just said in the introductory thread, I am a ME/CFS patient since April 2013, that is 21 months. Prior to that, I was the healthiest guy around (I had very good health habits since ever). I have a very good idea of what triggered of my illness, and I believe that I can reverse/mitigate some of the symptoms I have or maybe all the them. To that end, I will work in a holistic way (to enhance my whole system) and apply specific therapies for specific symptoms, so I can raise my overall health level.

The list of my symptoms includes:

- Very high fatigue levels (I am still able to work on a very flexible scheduling, which is fortunately possible for me because I do research for a living). The extent of my fatigue changes from one day to the other (I am never at 10/10, but the minimum I get is like 3/10).
- Dizziness and brain fog. I do have brain fog (or a very similar sensation) on a daily basis, but fortunately I am not dizzy every day. The latter is indeed the symptom I hate the most.
- Muscle pain. This is mainly noticeable in my neck - the rest of my body is pretty much fine, since I only have pain every now and then.
- Troubles in catching my breath, especially if I talk for a while without stopping.
- Very bad thoughts and depression. I am being followed by a psychotherapist.

I use to have/experience pain in my groins, chest pain, itchiness all over my body, and a couple minor symptoms.

I am also currently fighting against a recurrent fungi infection in my genital area, which might or might not be connected to my condition (I prefer to use the word "condition" instead of "illness"). I am fighting it with pharmaceutical drugs, which I use in last resource only. However, in this particular case, I am using a creme, which hasn't many side effects.

I intend to create a diary of my recovery, so I can keep myself motivated, learn from others with similar conditions and sharing my experience.

In the last 3 months of 2014, I didn't take any supplements, since I wanted to evaluate how my health was affected when I remove all supplements. Overall, I think that I didn't notice a thing, which means that what I was using was not that effective.

I am currently thinking about giving the following supplements a shot:

- Chinese and Korean Ginseng for fatigue
- Anti-oxidant combo (Ultra Anti-Oxidant - Douglas Laboratories) for fatigue
- Black cumin seed oil (Nigella Sativa) for fatigue
- Co-E1 and NADH (from ENADA) for fatigue
- 5-HTP for depression and good mood
- Lemon balm (Melissa officinalis) for brain fog
- Special teas for dizziness
- Complete multi-vitamin combo
- Oregano oil for anti-microbial activity
- Magnesium for muscle pain and relaxation

Other than that, I plan to do

- Meditation on a daily basis
- Moderate exercise, such as swimming
- Stretching exercises every hour
- Between 7 and 8 hours of sleep (different periods make me more tired)
- Very clean diet

Any tips and comments on my progress are welcome. I will update the list of supplements with the exact amounts I am taking and keep track of what is effective or not.

 

[Dreambirdie]

Good luck!

 

[Gondwanaland]

This person reversed early stage of multiple sclerosis with Ayurvedic medicine. I read about her on my local newspaper.

 

[jeff_w]

Hello @researcher ,

I'm a researcher too, though too ill to work at this point. Like you, I was extremely healthy before all of this happened. I've been sick for 3.5 years now. Looking back, when I was in your position (fairly mildly affected after only 9 months), I wish I had seen a CFS/ME specialist at that early stage.

Good luck with whatever you choose to do. I stand by my recommendation of seeing a specialist at the early stages of this condition.

 

[researcher]

Hi @Jess_w ,

Did your condition get worse? Is it common to get better as time or worse, as time goes by?

Thanks

 

[jeff_w]

Hi @Jess_w ,

Did your condition get worse? Is it common to get better as time or worse, as time goes by?

Thanks

My condition definitely got worse. Before all of this happened, I was an extremely healthy young guy who ate well and worked out 5 days per week, pumping iron and running.

My illness started out with fatigue, brain fog, muscle and joint pain, and depression. When I first became sick, I was quite fatigued but was still able to attend school and work. As time wore on, after 3 years being mildly/moderately ill, I became bedridden last June. I was unable to feed myself or even walk to the kitchen to get a drink of water. I required around-the-clock care, home health nurses, and needed help getting out of bed to use the restroom. There were times when I couldn't speak due to vocal paralysis caused by extreme exhaustion. I had to use a pen and paper to communicate.

After seeing my specialist, I'm much better. I can speak, walk around the house, get water, and feed myself without any problems. However, I'm not well enough to work. I can't drive yet either, due to dizziness caused by orthostatic intolerance which is very common with this illness.

The really good news: I'm somewhat back to normal in a few ways now. My personality is coming back, and I'm less depressed. Also, I'm able to stay out of the house for 4 hours before needing to go home and lie down. I can go out to coffee with friends again. I went to Black Angus with family for a New Years Eve dinner, and I made it through and had a lot of fun. I am definitely continuing to improve, but progress is slow. Had I seen my specialist early on, especially before I became bedridden, I'd be in much better shape! I lost so much time to this illness, and that was unnecessary.

There are no guarantees with this illness. Getting worse is very common, particularly if you push yourself to your energy limits. With early intervention from a specialist, you maximize your chances of becoming well again and are less likely to deteriorate as I did.

Where are you located? There are several specialists throughout the United States, and there's one in Belgium. There may be a tiny handful in other countries as well.

 

[Hip]

You might want to focus on treatments, both supplements and drugs, that are known to help ME/CFS.

 

[jeff_w]

@researcher ,

Something else I meant to add: There are a lot of subdiagnoses within CFS/ME (viral, orthostatic, autoimmune, etc). This is a complex illness with multiple pieces. This is why it is so important to see a specialist. He or she will be able to determine the jigsaw pieces that form the entire picture of your particular form of this illness.

Your average doctor will know next to nothing about this condition.

Also, many people "crash" before seeking specialist help. It is very important to seek help early. You haven't crashed at this point, you are fairly functional. Now is the time to be aggressive, if you are financially able to seek specialist help.

If you do crash, you may become bedridden. At that point, the road back is slow and difficult. Returning to health often takes years. Some people don't fully recover. I would hate to see this happen to you as it has to so many on this board.

 

[taniaaust1]

I think the others gave you good advice. I too crashed after about a year and suddenly found myself bedridden and needing another to care for me. I was bedridden for over 9mths and couldnt even walk to the loo. I strongly suggest too for you to seek out a ME/CFS specialist NOW, dont wait. A ME/CFS specialist will find actual things which need treating! Right now you are doing the needle in the haystack thing which rarely works....

As far as your current plan goes, those things have been tried by the general ME/CFS community (a few do find magnesium helps, in my own case it dont) and most of us will say they didnt work at all. I trialed about 30 different things before I finally found something which helped just a little for one symptom (and I had over 90 symptoms and abnormalities). It was only when I stopped doing the find the needle in the haystack thing..guessing what may help and actually get some tests done to work out what I needed did I start to trial things which proved to be more useful to my case (with that I get about a 50% chance I will find the thing Im trialing benefical).

Some of your plan eg moderate exercise, could well end up making you worst if its ME/CFS which is the big issue rather then depression (exercise helps depression but it can be terrible for ME). As far as 'clean diet" goes, it may be a different kind of diet you need, diet does help many of us a bit but its often more complicated then just avoiding junk food and eatting healthy.

I suggest if you have ME/CFS, do check to see what works the most for others which seem to be in the same subgroup of it as you. Better still get more tests so you can find out more about what you need rather then guess. (When you trial so many different things at once too, if something does help, it can be hard to work out which it is). 75% of ME/CFS patients find one of the vitamin Bs helpful, B12 helps 50% (thing is different of us need different forms of it) .. so if you want to trialing something.. that would be a good start. (check out methylation protocols)

Multi-vitamin Combos "can" can be an issue for many of us eg it turned out I had sky high copper so I obviously wasnt doing mysel any good when I took a complete multi-vitamin.

I also had gene mutation I didnt know about at the time so couldnt convert certain things in the multi-vitamin so was quite deficient in things eg folate.. instead I need active form.. I also need active form of B12. The vitamins I do need, I need at a far higher level then the multi-vitamins provide eg D3.. I need more then double of the standard dose of D3 pills and what is in multi-vitamin wouldnt touch my D deficiency. So once again Im going to say you need to find out exactly what you really need.

You may want to consider if you also have some form of orthostatic intollerance affecting you..as that too can cause fatigue, brain fog, chest pain and dizziness and other symptoms (I assume you are upright when talking).

You need a ME/CFS specialist to guide you on what may be worth trialing as from your list I can see you are going to end up wasting a heap of money trialing things which are doubtful to work based on what often helps us and what doesnt. eg Ask the community how many have tried Ginseng and if it helped.. it doesnt help many. A non ME/CFS person it is a good booster but for us, I dont think Ive heard anyone here who's had success with it (I tried pure concentrated extract which I made teas of it for a while, it didnt touch my ME)

 

[WillowJ]

Hi @Jess_w ,

Did your condition get worse? Is it common to get better as time or worse, as time goes by?

Thanks

Most people who have postinfectious fatigue get better in the first months or years.

Most people who do not recover during the first 3-5 years remain ill. Of these, many have a relapsing-remitting course, some improve, and some get worse.

Some people are able to find things they can do now (on their own or with a doctor), to improve their situation. In the next few years, we should get approved drugs which will more reliably work to improve more people (and possibly cure some).

Welcome to the forum.

 

[researcher]

You might want to focus on treatments, both supplements and drugs, that are known to help ME/CFS.

Do you suggest anything else than what I listed?

Thanks!

 

[researcher]

@researcher ,

Something else I meant to add: There are a lot of subdiagnoses within CFS/ME (viral, orthostatic, autoimmune, etc). This is a complex illness with multiple pieces. This is why it is so important to see a specialist. He or she will be able to determine the jigsaw pieces that form the entire picture of your particular form of this illness.

Your average doctor will know next to nothing about this condition.

Also, many people "crash" before seeking specialist help. It is very important to seek help early. You haven't crashed at this point, you are fairly functional. Now is the time to be aggressive, if you are financially able to seek specialist help.

If you do crash, you may become bedridden. At that point, the road back is slow and difficult. Returning to health often takes years. Some people don't fully recover. I would hate to see this happen to you as it has to so many on this board.

Thanks for the advice - I will seek specialist help. The reason why I didn't do such thing up until now is because I was given the diagnose of "something similar to CFS or a mild version of CFS".

 

[researcher]

Thank you @taniaaust1 and @WillowJ !

 

[Hip]

Do you suggest anything else than what I listed?

Thanks!

Where to begin!

Many ME/CFS supplement and drug treatments are outlined in this ME/CFS roadmap.

Then there is the free abridged edition of Maija Haavisto's book Reviving the Broken Marionette, which lists lots of drugs that are effective for ME/CFS. See also her summary here: Anecdotal evidence of different CFS/ME treatments.

Erica Verillo's inexpensive but comprehensive book, CFS — A Treatment Guide also lists lots of treatments that are effective for ME/CFS.

Dr Jay Goldstein's treatments (some of which have occasionally led to almost instant remission from ME/CFS) are listed here.

 

[NilaJones]

You might want to consider forgoing the ginseng. For me, it would feel good but then I would crash when it wore off, and if I took it over time I would get much sicker.

 

[researcher]

You might want to consider forgoing the ginseng. For me, it would feel good but then I would crash when it wore off, and if I took it over time I would get much sicker.

What dosages and how often did you use? What was the exact type of ginseng?

 

[researcher]

Hello @researcher ,

I'm a researcher too, though too ill to work at this point. Like you, I was extremely healthy before all of this happened. I've been sick for 3.5 years now. Looking back, when I was in your position (fairly mildly affected after only 9 months), I wish I had seen a CFS/ME specialist at that early stage.

Good luck with whatever you choose to do. I stand by my recommendation of seeing a specialist at the early stages of this condition.

Hi again Jeff,

I just revised some blood work and such and it turned out that I am sick since April 2013, i.e. 21 months, not 9.

Best

 

[liverock]

@Hip
From 'Fixing the Broken Marrionette'

Captopril and enalapril are ACE (angiotensin converting enzyme) inhibitors. They are used to treat e.g. hypertension, congestive heart failure and diabetic nephropathy. ACE levels have been found to elevated in the majority of patients of CFS/ME.

Interestingly gene polymorphisms which increase ACE levels have been associated with GWS. Dr. David Moskowitz believes that ACE inhibitors can be very useful
in both CFS/ME and fibromyalgia.

Besides inducing vasodilation ACE inhibitors inhibit some other enzymes, such as dipeptidyl
carboxypeptidase, which breaks down opioid peptides like beta endorphin. They appear to reduce the secretion of Th2 cytokines, TGF–beta, NF–kappa B and NO, all of which are thought to be elevated in CFS/ME and fibromyalgia.

ACE inhibitors can also help orthostatic hypotension. They improve cerebral blood flow which may be beneficial in the treatment of cognitive problems. Captopril significantly reduces platelet aggregation
(similar to the “blood thinning” effect of aspirin), but enalapril does not.
In animal studies captopril has demonstrated analgesic properties. It has shown efficacy against migraine and other headaches.

Captopril is sometimes been used to treat chronic pain in CFS/ME in conjunction with other drugs. Jay Goldstein notes captopril and possibly enalapril to have antidepressive action.

I can understand ACE inhibitors helping GWS sufferers as the ACE Del mutation causes anxiety, but to find they also help POTS as well was a new one for me, a drug for lowering BP treating a low BP condition. Very interesting.

 

[ukxmrv]

In the 80's we didn't have much in the way of drug treatments so patients look a lot of supplements and vitamins. They did very little to help me and in the end my gut rebelled and in the end I was left with terrible stomach problems when I tried to take them any more.

I've taken most of the things you have listed and

some did help (like the CoQ10 and the Enada)
but most had no effect
and a couple (like a multi-vitamin combo and oregano oil) made me worse and feel poisoned or gave me a terrible gut ache.

My advice would to be

1. Don't take them all at once. Your gut may be effected by the sheer volume and you will never know which help and which harm and which are a waste of money

2. For the dizziness have a look at POTs and other BP/HR ideas

3. Get a proper diagnosis from a good CFS doctor. You mention fatigue so I am not sure what you are treating. My apologies if you have been down that route already

4. Have you tried a tea-tree wash for the fungal infection

and finally

Set a time limit for giving up the "natural" approach if it doesn't help you. It didn't help me and I am very grateful for the drug developments of the 80's, 90's and to date.

 

[Hip]

I am also currently fighting against a recurrent fungi infection in my genital area, which might or might not be connected to my condition (I prefer to use the word "condition" instead of "illness"). I am fighting it with pharmaceutical drugs, which I use in last resource only. However, in this particular case, I am using a creme, which hasn't many side effects.

I had exactly this, and I could not get rid of it for years, in spite of trying many anti-fungal creams and anti-fungal drugs.

I then read that sodium bicarbonate (baking soda) is a very potent anti-fungal, and I found that dampening and then lightly dusting the fungal infection each day with sodium bicarbonate powder rapidly got rid of the infection. Don't put too much powder on though because it can irritate the skin.