I still need serious help! Choline & Sensitivity to Meds....

[joejack102]

I had posted several months ago, but I'm still suffering. I still have not found relief.

Long story short... I have POTS/Dysautonomia/Chronic Fatigue Syndrome. Starting at an early age, I was extremely sensitive to medications and herbals remedies. 1mg of a drug was as if I had 100mg. I was probably the most sensitive person to meds that ever walked the planet. Eventually I noticed that when I took Choline supplements, my sensitivity started decreasing more & more & more, "permanently." This sounds like a good thing, but it made me more & more & more FATIGUED 24/7. So, something that Choline did to me made me less sensitive & more fatigued. It SHIFTED the balance (like a teeter-totter) from one extreme to the other gradually. I obviously discontinued use, but I cannot figure out how to reverse it.

Has there ever, in this history of this forum, been anybody who knew how to INCREASE their sensitivity to meds & herbs and perhaps REVERSE this problem?

Any/all tips are appreciated. I need to find what supplement reverses this, and I feel like I've been to the end of the universe trying "everything" and nothing has brought back my energy and my sensitives. Ideally, I want it 50/50 or well-balanced to where 1) meds actually work again and 2) I have enough energy to live!

 

[mariovitali]

I believe that you should turn your attention to your Liver. If you already took a 23andme test (or similar) talk to a specialist to assess how you metabolise certain Medications,

Also, take a Fibroscan test to check for any Liver Fibrosis.

 

[joejack102]

I believe that you should turn your attention to your Liver. If you already took a 23andme test (or similar) talk to a specialist to assess how you metabolise certain Medications,

Also, take a Fibroscan test to check for any Liver Fibrosis.

There's a major difference between being a "slow metabolizer" versus being hypersensitive.

Hypersensitive = effects happen immediately and are 100x's exaggerated
Slow Metabolizer = effects are 1 to 1, however after days of continuous long-term use, drugs accumulate since they are broken down too slowly.

I was hypersensitive. I was never a slow metabolizer.

 

[kangaSue]

It sounds too simplistic but have a look into drinking sodium bicarbonate as a means to activate the cholinergic anti-inflammatory pathway, something which @Hip posted about recently;
http://forums.phoenixrising.me/inde...carbonate-may-treat-autoimmune-disease.58958/

I'm similarly plagued by strong sensitivities to most meds and supplements and my pool of safe foods is down to 3 things but even these cause issues and after reading Hip's post above, decided to give this a go starting out on a very small dose, 1/8 teaspoon.

I have to mix it with ACV (apple cider vinegar though). I had tried sodium bicarbonate once before (1/4 tsp), and promptly vomited it back up. In a different experiment, I also threw up ACV taken by itself but by a lucky coincidence, I was reading about a treatment for gastric reflux that involved mixing these two together just before I found Hip's post above and figured I had nothing to lose in giving that a try.

To my surprise, this combo is well tolerated and I have had some encouraging signs of improvement after a week of having 1/8 tsp of bicarb sprinkled over 2 tsps ACV and diluted in about 150 ml of water when it stops bubbling, taken an hour before food 3 times a day.

The stomach upset and abdominal pain from eating as well as reflux are markedly improved after just a week of this. Reflux side of things improving is really interesting because I stopped taking ranitidine the day I started the bicarb/ACV regime. The bruising I always have on my hands and legs is the best it's looked for years too.

I haven't pushed things yet by adding new foods back into the mix yet but I see bicarb is used in a natural antihistamine alternative too so I'm hopeful for improvements when I do start challenging the system with previously troublesome food.
http://alisonvickery.com.au/natural-antihistamine/

 

[LINE]

Choline acts as a methyl donor, which would help the liver process things better. The liver is likely sluggish and cannot process these things correctly; multiple chemical sensitivity (MCS) also happens with a sluggish liver. There are multiple pathways that the liver uses including methylation, sulfation, glutathione and others . These pathways are dependent on specific nutrients to do their thing and when there is not adequate nutrient levels then the pathways cannot function normally.

Choline is a b vitamin and could suppress the other b vitamins, that is why it is usally advised to use the complete b complex family. This is true for most nutrients, for example if you dose calcium, in theory, you could be suppressing magnesium levels. The b family vitamins are necessary for protein, fat, carbohydrate metabolism and important functions. So it is a reasonable theory that the other b vitamins are lacking.

 

[Hip]

@joejack102, you have now posted 12 threads on exactly the same subject of your personal belief that a choline supplement triggered your ME/CFS and triggered your increased sensitivities.

Here are your previous threads on the same subject (it not really good forum etiquette to post repeated threads, by the way):

• I still need serious help! Choline & Sensitivity to Meds....
• Acetylcholine Induced MAJOR LONG-TERM FATIGUE!!!
• CRITICAL Choline / Sensitivity Problem -- Please Help
• Acetylcholine Imbalance -- Sensitivity to Meds!!!
• What increased your sensitivities?
• Sensitivity to SUPPLEMENTS (not meds)
• Sensitivity to Meds -- What disease should I be tested for?
• Emergency - What made you MORE sensitive?
• Emergency, Please Help
• Supplement made you MORE "sensitive to meds?"
• Members Only - Hello, I'm here to get help.
• What increased your sensitivity to meds?

You think that because (in your view) a choline supplement triggered your ME/CFS and sensitivities, there must exist an antidote supplement that can reverse the situation.

But that's not the way ME/CFS works. Once ME/CFS is triggered, then the disease has taken hold. You can't just reverse your steps to go back to where you were before you developed this disease.

Your general idea is that because supplement X (in your view) caused your ME/CFS, there must be some supplement Y that can undo the effects of supplement X. That's just complete nonsense; diseases are not generally caused by supplements.

You would be well advised to see an ME/CFS specialist doctor, and get some diagnosis and treatment from him. Or do your own research, and find out what treatments ME/CFS patients are using to improve their ME/CFS.

I can't see that you will get anywhere trying to find a supplement Y that can undo the effects of supplement X.

Whereas there are few treatments that can improve ME/CFS symptoms, such as oxymatrine, Valtrex, Valcyte, tenofovir, low-dose naltrexone.

 

[joejack102]

@joejack102, you have now posted 12 threads on exactly the same subject of your personal belief that a choline supplement triggered your ME/CFS and triggered your increased sensitivities.

@Hip Some of those post go back to DECEMBER 2016... Not to mention that I NEVER ONCE said that Choline triggered by disease, and I said Choline reduced my sensitivities, not increased.

(it not really good forum etiquette to post repeated threads, by the way):

@Hip Know what's not good etiquette... Criticizing somebody for posting too much without having your facts straight. You stated I claimed that Choline caused my disease. That is completely 100% false. You'd think for somebody criticizing me for posting too much, you'd know this? You also claimed I said Choline triggered my sensitivities. It did not; it reduced them.

You think that because (in your view) a choline supplement triggered your ME/CFS and sensitivities, there must exist an antidote supplement that can reverse the situation.

But that's not the way ME/CFS works. Once ME/CFS is triggered, then the disease has taken hold. You can't just reverse your steps to go back to where you were before you developed this disease.

@Hip Let me repeat for the 1000th time explicitly that I NEVER STATED that my disease was caused by taking Choline. My POTS/CFS disease existed LONG before that. You didn't read the countless times I posted this? Or perhaps you didn't comprehend? Or you are just trying to be argumentative rather than trying to help?

Your general idea is that because supplement X (in your view) caused your ME/CFS, there must be some supplement Y that can undo the effects of supplement X. That's just complete nonsense; diseases are not generally caused by supplements.

@Hip Again, how many times do I have to say that I never said Choline caused my disease???

You would be well advised to see an ME/CFS specialist doctor, and get some diagnosis and treatment from him. Or do your own research, and find out what treatments ME/CFS patients are using to improve their ME/CFS.

@Hip You think I haven't done that? Instead of making personal attacks to somebody who is in severe medical distress and on their last dime, may I suggest only posting if you have something kind and helpful to add? If not, learn some manners and be respectful to somebody who needs help. I've seen a geneticist, neurologist, and cardiologist who all specialized in POTS/Dysautonomia.


Please review this graphic I made very carefully.

Does this graphic help clarify?

 

[joejack102]

To @mariovitali @kangaSue and @LINE , Thank you very much for your posts. I'm reviewing all of your input, and it seems very helpful. Especially the advice on supplements and the liver.

Followup question for @LINE, in terms of the liver, is there something that excess Choline could slow down or down-regulate that perhaps one of the other ingredients is needed to balance?

 

[Hip]

Not to mention that I NEVER ONCE said that Choline triggered by disease, and I said Choline reduced my sensitivities, not increased.

Sorry, I got it the wrong way around: choline reduced not increased your sensitivities. And according to you, choline permanently triggered extreme fatigue, shortness of breath, overall pain and brain fog:

Choline receptors. Choline caused a permanent shift in my sensitivities, even after I stopped using them. It caused me to be left with extreme fatigue, shortness of breath, overall pain, brain fog

You mentioned the same thing in your 12 threads on the same subject.

how many times do I have to say that I never said Choline caused my disease???

OK, so according to you choline dramatically and permanently worsened your ME/CFS condition, but you already had some ME/CFS to begin with.

Criticizing somebody for posting too much without having your facts straight.

I was not talking about posting too much; nothing wrong with posting a lot. I was referring to your 12 duplicate threads on the same subject. Why not put everything into one thread? Its more helpful when a particular topic is confined to one thread, rather than spread across duplicate threads. Usually the mods will delete duplicate threads.

Instead of making personal attacks to somebody who is in severe medical distress and on their last dime, may I suggest only posting if you have something kind and helpful to add

So my suggestion that you might want see an ME/CFS specialist (which you have not yet done it seems) is a personal attack, according to you?


What I mentioned above was with the intent of being helpful: I think you are barking up the wrong tree with your unscientific ideas that if supplement X permanently triggers worsened symptoms, then there is a supplement Y which is an antidote to that.

It may not even have been choline which worsened your ME/CFS; it might just be a coincidence that your ME/CFS got worse during the time you were taking this supplement.

What I said above is that you might consider trying some of the standard ME/CFS treatments.

What standard ME/CFS treatments have you actually tried so far?

 

[joejack102]

OK, so according to you choline dramatically and permanently worsened your ME/CFS condition

Worsened symptoms and improved others, not the underlying condition.

Why not put everything into one thread?

Usually, I would gain a fantastic and beneficial fresh new "look" at my situation from new people. Once the thread got overly complicated (nobody has time to read 12 pages worth of comments), it was easier for me to try to simplify my case and get a fresh set of eyes to start back at "ground zero."

choline which worsened your ME/CFS

It didn't worsen my underlying POTS/CFS. It altered one particular subset of symptoms.

see an ME/CFS specialist (which you have not yet done it seems)

I've seen 4 specialist now who primarily, virtually exclusively, see POTS/ME/CFS/Dysautonomia patients. Why are you saying I haven't done this?

See this graphic. The normal line is a normal person's sensitivity to meds.

Due to POTS/CFS/Dysautonomia, my body is not balancing something... See the green line in the graphic above? I'm not expecting some supplement to "cure POTS", but I need to figure out what I'm deficient in to counteract what the Choline did, I promise. Does this kind of make sense?

What standard ME/CFS treatments have you actually tried so far?

Graduated exercise program specifically for POTS, lots of water, avoiding sugar, high salt diet (even tried salt tablets), Florinef to increase blood volume, avoiding all caffeine products, beta blockers, improving quality of diet overall, and more.

 

[Hip]

Worsened symptoms and improved others, not the underlying condition.

If your ME/CFS symptoms get permanently worse, then that by definition is a worsening of the underlying condition.

ME/CFS comes in various degrees of severity: Very Severe – Severe – Moderate – Mild. The more severe your symptoms, the more severe your ME/CFS condition.

Graduated exercise program specifically for POTS, lots of water, avoiding sugar, high salt diet (even tried salt tablets), Florinef to increase blood volume, avoiding all caffeine products, beta blockers, improving quality of diet overall, and more.

There are no actual ME/CFS treatments in that list.

If you say you went to an ME/CFS specialist, did't that doctor test you for viruses, and provide antiviral or immunomodulatory treatments for those infections? That's what ME/CFS doctors in the US typically do.

Due to POTS/CFS/Dysautonomia, my body is not balancing something... See the green line in the graphic above? I'm not expecting some supplement to "cure POTS", but I need to figure out what I'm deficient in to counteract what the Choline did, I promise. Does this kind of make sense?

It makes sense, but it is like a Mickey Mouse theory of ME/CFS. It's similar to these ideas you sometimes see posted on this forum that ME/CFS is due to some vitamin deficiency. You cannot reduce a complex disease like ME/CFS down to a vitamin deficiency, as some people try to do.

 

[joejack102]

If your ME/CFS symptoms get permanently worse, then that by definition is a worsening of the underlying condition.

Some symptoms drastically improved though while others got worse. Did you see my response? Fatigue got much worse, and sensitivities got much better. Underlying condition is still there.

no actual ME/CFS treatments in that list.

Visit https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3390096/

like Mickey Mouse theory of ME/CFS

I never said this was a theory for ME/CFS..... This thread pertains to how specific supplements affected specific symptoms of mine.

 

[Hip]

Some symptoms drastically improved though while others got worse.

The reduction in your response to medications is not a symptom of ME/CFS; it's not really a symptom of any disease I am aware of. I am not sure how you would classify this. But at any rate it is not considered an ME/CFS symptom.

Whereas when it comes to fatigue, pain and brain fog, which are all ME/CFS symptoms, you say these all got substantially and permanently worse. Thus your ME/CFS got worse.

Visit https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3390096/

I understand you had some POTS treatments, but POTS is only one of dozens of symptoms and conditions found in ME/CFS.

I am referring to treatments that can have an overall beneficial effect on ME/CFS, rather than a treatment which targets a specific individual symptom of ME/CFS. I take supplements like peppermint oil for my IBS, which is one of my ME/CFS symptoms; but I would not call peppermint oil an ME/CFS treatment, as it does not help any of my ME/CFS symptoms other than the IBS.

Whereas treatments such as oxymatrine, Valtrex, Valcyte, tenofovir and LDN can have an overall benefit for ME/CFS.

 

[Hip]

You did not mention whether your ME/CFS doctor tested you for viral infection.

 

[joejack102]

LINK: http://phoenixrising.me/research-2/...nic-fatigue-syndrome-by-cort-johnson-aug-2005


This article is from this same website, Phoenix Rising..........

____________________________________________________________________
Choline on the Brain? A Guide to Choline in Chronic Fatigue Syndrome
MARCH 4, 2012

(see link for entire article)

Puri’s study found that CFS patients (a) have significantly higher levels of choline in the occipital region of the brain than do controls and (b) exhibit an abnormal choline gradient between the motor and occipital cortex (Puri et. al. 2002).
...

Summary
The researchers suggest increased choline levels seen in the brains of CFS patients occur when pathogenic (or other) insults on the cell membranes in the brain trigger phospholipase activity and choline release. Increased choline levels in a part of the brain involved in task processing and motor activities (movement) could account for the fatigue associated with mental effort and movement found in CFS.

Reduced ATP levels due to high phospholipase activity in the muscles could also contribute to the exercise intolerance seen in CFS. Several processes that appear to be upregulated in CFS (cytokine production, oxidative stress) could trigger phospholipase activity.

The very small sample sizes in the studies noted automatically raises a red flag; too many small apparently significant studies of CFS patients have failed the test of replication. It is encouraging, however, when independent study groups, no matter how small their sample sizes, find similar results in two different areas of the brain.

 

[Hip]

You did not mention whether your ME/CFS doctor tested you for viral infection.

 

[iwillwin1day]

Take tulsi holy basil/ licorice. Both are antidote for choline toxicity. See which one helps you. Start with low dose and if it helps increase the dose.