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Debilitating chronic symptoms after IV infusions - basically bedridden / couchridden

~ Background ~

26M. 6'0", 135-140lbs. Very healthy eater (cook 3 fresh meals a day). Was very active (mountain biker). Not on any medications. Currently taking vitamin D, K2, Benfotiamine, B12, digestive enzymes (w/ Betaine HCL), and some magnesium. Potassium and glycine have always made me feel very fatigued and lethargic for over 24hrs. I have reoccurring SIBO and Candida (got rid of them a while ago but they're back now), high oxalates, some methylation problems (heterozygous MTHFR gene mutation and low SAMe), some high bacterial & fungal markers, and mostly normal hormone levels besides low FSH (but normal LH), very low IGF-BP3 (but normal IGF-1) and low vitamin D. These were all tested before the IVs. I've also always had difficulty gaining weight despite eating a normal amount. In 2021, I took very high dose Betahistine for 2 weeks and then stopped cold turkey. A day later, I developed chronic extreme neurological sleepiness / numbness / suppression, lack of alertness, and some other debilitating issues, which is part of the reason I was seeing the doctor who gave me those IVs.

~ How it Began ~

This all started for me about 6 months ago, after doing some IV treatments (glutathione, COQ10, ALA, FastVitamin, all in separate IVs. Also did a course of NAD+ a month prior), recommended by my doctor for other chronic problems I was dealing with. None of them seemed to help with anything except for maybe the glutathione a tiny bit. I was in the middle of a COQ10 infusion when I started to feel like I could pass out, like my brain was just going to shut down. I had to reach over and turn the drip rate dial all the way down myself. I remember they set the drip rate a little higher than they probably should have. A week later, I went in for a FastVitamin IV (methylated b vitamins, magnesium sulfate, some amino acids, etc.). About 5 minutes into the IV, I started getting that same feeling so I reached over and turned down the dial again. Driving home was scary that day. Ever since then, I've been dealing with these symptoms:

~ The Symptoms ~

* Weird feeling like my brain wants to shut down or pass out
* Extreme fatigue and neurological sleepiness. Body often feels super heavy and slow, like my brain doesn't want to move my body.
* When I try to go to sleep, it feels like I'm going to pass out instead of fall asleep (this has improved)
* Light tingling/zinging/burning sensation on top of head sometimes
* Sometimes some anxiety
* High heart rate while standing / walking (up to 130 sometimes just walking around the house)
* Headaches at night sometimes (I never used to get them. These have improved)
* Lower body temp (used to be 99°, now 97.3°), but head feels hot sometimes
* I had one week where I really struggled to breath. It felt like my body had so little energy that it couldn't even do basic functions like that. Everything from my brain down to my gut just felt like a heavy inactive lump
* Digestion feels worse (this has improved)
* Chest pain and/or pressure sometimes (echocardiogram + heart monitor showed heart is perfectly healthy. This has improved a good bit)
* Nasal passage often feels blocked / swollen
* More susceptible to panic attacks (never ever had any trouble with that before, not even close)

~ Things That Help ~

I've increased my salt intake which seems to help a tiny bit. Ice packs on the head also seems to ease some of the symptoms a bit when they're bad. My doctor prescribed a Fisher Wallace stimulator, which basically just encourages calming brain waves. This has allowed me to sleep, and has reduced the restlessness and heart rate a little.

~ Things That Make it Worse ~

Any kind of physical or mental exertion seems to make symptoms worse for the next couple days. Doing anything in the heat/sun is the worst, even if it's just a mellow walk. Before this happened, I could do intense mountain bike rides in humid 95° weather and be fine the next day. Now, I have to be super conscious about every little move I make. Something as simple as watching the wrong TV show can trigger symptoms. Eating also used to make symptoms worse, but that part seems to have gotten better. Symptoms seem to worsen after I do things that increase endorphins or adrenaline (talk and laugh with family, watch something that gets me excited, listen to music I like, have an argument, etc.)

Do any of you have some ideas for what could have happened? I basically can't do anything and am stuck in a chair for the majority of the day. Seems like many of the symptoms match up with those of dysautonomia, but I know it's more complex than that because I still have symptoms even when my heart rate has been pretty good all day, and my blood pressure has been fine every time I've checked it. My neurological PT doctor thinks there may be some weird things going on with blood flow, and that a small piece of it might be dysautonomia, but he's still not sure. Hopefully those IVs didn't cause some kind of permanent damage.
9 Responses
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1081992 tn?1389903637
Last for today: temperature dysregulation can be a not-uncommon feature of Chronic Fatigue Syndrome (CFS)

So while the pathophysiology might not be exactly understood in CFS, there is cause to say that temperature dysregulation *can* be immune mediated. We don't have to just be confined to saying it's standalone dysautonomia.
Helpful - 1
1081992 tn?1389903637
"aerobic exercise but not anaerobic"
Exercise is tricky, too, in chronic inflammation. Post Exertional Malaise is a feature of CFS and also long Covid. Not in everybody, of course. But then, well... some say that PEM is pathognomonic for CFS. So what exactly is CFS? Nobody can say really. It's a syndrome (collection of symptoms). But we can say it's been known for a while and it's a good example of a mystery immune condition that has no standard sure treatment.

Exercise causes release of IL-10. Although most InterLeukins are pro-inflammatory, IL-10 is anti-inflammatory, usually but not always.

Helpful - 1
Interesting. It was weird because before the Betahistine, it was the opposite. Weight lifting made me feel better but cardio exercise sometimes worsened symptoms. After the Betahistine, I couldn't do weight lifting for more than a few minutes without my symptoms worsening.
1081992 tn?1389903637
You can run this by your neuro doc: emerging evidence is describing a role of MCs via inflammatory Substance P and also CGRP in peripheral and central neuropathy.


What did I miss?
Helpful - 1
1081992 tn?1389903637
Do not let any doc say they have ruled out MCAS because your serum tryptase is normal. There are many false negatives.

What to do then? Best is probably empiric treatment, as an experiment:
-H1 blocker
-H2 blocker
-MC stabilizer such as quercetin or luteolin
-possibly anti-leukotriene for lungs

If you improve, that's pretty much a Dx.

And overall being as anti-inflammatory as possible. Stress is pro-inflammatory. The MC stabilizer Rx cromolyn was developed out of plant flavonoids such as anthocyanins.
Helpful - 1
I'll definitely look more into the MCAS route! I actually tried H1 and H2 blockers after the Betahistine and they didn't help with anything. I can't take H2 blockers because they reduce stomach acid, and mine is already low. I will try quercetin sometime though. I have some lying around.
1081992 tn?1389903637
Hey, you answered!  :)  Cool, let's proceed then.

Betahistine is an H3 antagonist, but an H1 agonist. If you have high H (and probably do), then it's likely not from over production but reduced breakdown. However, in a background milieu of high H levels, MCs are likely to degranulate more H in a vicious cycle. MCs are paracrine.  Maybe you know all that, but it can help to bounce things back and forth to coalesce knowledge. There is a urine test for N-methylhistamine. It would be ideal to get measured during bad symptoms, not on a good day. (Btw, H itself lasts very briefly in circulation mtaht's why we look for the longer lasting metabolites.)

You didn't mention MCAS though, which is very heterogeneous and so can do many things, and also not do things that are common in others.

"Something as simple as watching the wrong TV show can trigger symptoms."
That's not unusual in CFS/ME, which is associated with MCAS.

In these mystery cases, what we want to identify is:
1) the underlying cause/tendency (such as MTHFR C677T and others)
2) some precipitating profound incident (such as the Betahistine)
3) current acute triggers, which can change at any time

As for #2, there is such as thing as post viral syndrome. Also post infection syndrome, and post vaxx syndrome. The general idea is that the immune system gets changed. That might mean a long time of managing symptoms, rather than having a cure. (What you have is likely auto-inflammatory, not autoimmune; but it's worth knowing that there is no cure for autoimmune diseases, only immune suppression.) Some people with heavy metal or organic poison exposures also exhibit ME/CFS-like symptoms. So it's not unreasonable to suspect your Betahistine experience as similarly changing your immune system; though the mechanism is not the same, they result can be the same.

All that leads to thinking: be as anti-inflammatory as possible, and avoid anything pro-inflammatory.

"high oxalates"
Are you vegan or plant-based? You might be aware that the "super healthy" kale smoothies ruin some peoples' health. If you quell the over active MCs, you might lose oxalate sensitivity.

Do you know that Benadryl/diphenhydramine is the same thing as the sleep aid Sominex? That the stomach antacid Pepcid is really an H2 blocker?

There is some ex-Soviet doc in Canada who treats hyper histamine with... histamine. So you never know for sure how the immune system will react. All you can do is try things in a prudent fashion.

"After the Betahistine, my doctor actually said my results showed slight overmethylation"
That would take some pondering. Btw, the common workout supp TMG is a methyl donor with little or no side effects, and not expensive like SAMe.

Let's see... long Covid is similar to MCAS, so is vaxx injury. People with pre-existing MCAS seem to do worse with both of those, in general.

Helpful - 1
Oh I'll always try to reply to comments that are genuinely trying to help! Maybe I'll see if my doctor can order that urine test. I don't really have random flares though. My symptoms are kinda just horrible 24/7 and if I exert myself mentally or physically, then I get worse for a couple days. I'll definitely talk with my doctors about potential MCAS issues. They're pretty open to exploring new ideas.

To your point about inflammation, I did take low dose naltrexone for several months (which massively reduces inflammation) and my post-Betahistine symptoms definitely did improve. So did some of the other chronic issues I was dealing with. However, it was also giving me additional symptoms that were almost just as bad, no matter the dose: weight loss (I'm already underweight), feelings of spaciness and sleepiness, and I think it worsened my candida. So I eventually stopped taking it.

No I'm definitely not a vegan haha. The foods I avoid are rye, wheat, barley, oats, corn, alcohol, dairy, sugar, and processed foods. I eat lots of chicken, turkey, vegetables, brown rice, leafy greens, water, olive/coconut/avocado oil, nuts, and egg whites, some salmon a few times a month, and occasional red meat. I started eating this way in 2020 and it was the first thing that gave me some relief from my symptoms. The things I had been experiencing for many years up to that point were POIS, stomach problems, and this "hectic brain" feeling. The hectic brain thing felt like my brain would get overstressed/overstimulated, my acne would worsen, my face would feel clammy and it would be harder to retain information. It was often triggered or worsened by artificial lights, conversations with friends and POIS. All of these symptoms are much better now though and not life-altering issues anymore.

Yeah I've actually heard something similar, that peoples histamine issues were greatly improved after taking histidine.

I've looked into TMG, but after looking back at my methylation profile test and talking with my doctor, we both agreed that TMG would not be the way to go for me. Unlike most people with low SAMe, my methionine is on the normal/high side, and my homocysteine is normal, so TMG wouldn't really work for me. He said he either recommends straight SAMe or methylated B vitamins minus Folate.

I have an appointment scheduled with a genetic specialist, so maybe I'll get some good information from that.
1081992 tn?1389903637
Hi, I've found that if I knock myself out for 20-30 minutes writing a detailed and precise reply, that gets ignored 90% of the time. Yet this is likely an easy Dx, so I can't just ignore you. So here's the short & quick version:

MTHFR --> under methylator --> hyperhistaminemia

hi dose IV histamine analogue (Betahistine) + hyperhistaminemia -->  major error --> chronic mast cell hyperactivity

which gives a host of effects such as:
----mast cell hyperactivity --> vasodilation --> blood pools in legs --> orthostatic hypotension --> reflex orthostatic tachycardia (try the "poor man's tilt table test")

---histamine is a bronchoconstrictor

and on and on.

Helpful - 1
Thank you so much for the reply! The Betahistine was not administered via IV. I just took high doses orally back in 2021 (gradually increased up to 224mg). The IVs were more recent (6 months ago).

After the Betahistine, wouldn't it be the opposite  though? It being a strong H3R antagonist, wouldn't it cause the body to upregulate H3 histamine receptors, which then leads to less histamine being produced in the brain after I stopped? I remember for many months after the Betahistine, things like histidine and Conessine (natural H3R antagonist) helped ease some of the symptoms. The way I felt after the Betahistine was exactly the opposite of how I felt during the 2 weeks I took it.

You're definitely right about me having histamine issues before the Betahistine though. The allergist I went to actually mentioned that I had an unusually strong reaction to the histamine itself. That seems to have improved though, after the Betahistine and from taking things like magnesium and Vitamin D. I think healing some gut problems also helped. After the Betahistine, my doctor actually said my results showed slight overmethylation (was definitely an undermethylator before though).

I should mention that the post-Betahistine symptoms and the post-IV symptoms are completely different. The former includes only neurological symptoms like intense neurological sleepiness / "suppression", lack of alertness, feeling like brain-limb connection was weak, inability to feel excitement, etc., but also better concentration and less of the hectic feeling I used to have in my brain. The latter includes pots-like symptoms, anxiety and tingling in head, lightheadedness, extreme fatigue, anxiety, lowered body temperature, etc. The things that used to help my post-Betahistine symptoms (aerobic exercise but not anaerobic, Ginkgo Biloba, histidine, caffeine, etc.) do not help my current post-IV symptoms. In fact, some of them would probably worsen them.

I do think the Betahistine incident and the post-IV symptoms could be connected in some way. Just don't know how yet.
1756321 tn?1547095325
Your question reminds me of the clinical trial that went horribly wrong back in the UK in 2016. I watched this a few days ago on YouTube: The Infamous Drug Trial That Shocked Britain | Real Stories Full-Length Medical Documentary.  

In short, the men were given too much of the drug too quickly which caused an overreaction of the immune system called a cytokine storm.  Years later the same drug was used again in a clinical trial at 0.1% of the original dosage for a longer period with no issues.
Helpful - 0
1081992 tn?1389903637
"I was in the middle of a COQ10 infusion when I started to feel like I could pass out, like my brain was just going to shut down."
Things like that made me think of excess vasodilation from a histamine reaction. It would have been ideal if you had a BP wrist monitor for all of those spells. Likewise for now standing up while checking BP.

(The extreme case of the same hypotensive mechanism is hypovolemic shock from anaphylaxis. MCs are central to anaphylaxis.)

Besides histamine, bradykinin is another inflammatory vasodilator. Maybe rthat's why H1 blockade didn't benefit you, because bradykinin was the cause. MCs make bradykinin, also endothelial cells do.
Helpful - 0
1081992 tn?1389903637
You're a very advanced patient, both in experiences and knowledge. I'll throw out some ideas, they're more than just casual thoughts.

Since you've already been on and had benefit from LDN, what about trying a DMARDs like methotrexate or hydroxychloroquine /Plaquenil? Getting out from under inflammation somewhat might let the natural healing processes get some traction.


Why avoid egg yolks? I see you are getting some SFAs, but maybe your nutrition is too calculated. I'd seriously start eating the SAD "junk food" diet, to gain some weight. Maybe being too lean and too underweight can be a bad factor in itself.

Just as there are some vegans who get ill, there are Paleos and Carnivores who react badly to their own regimen. Some thrive, some don't. Btw, I disagree with the current demonization of seed oils; that's just a fad and there are always fads that have to demonize something and glorify something else (though Carnivore is an effective total-elimination approach). Seed oils have anti-inflammatory phytosterols.

Also, sugar is not innately bad - except e.g. for those with Candida. Over consuming sugar is bad, though. (That "Bitter Truth About Sugar" guy Lustig ended his first viral talk with saying that he doesn't have a book he's pushing, so he is unbiased. Then he got in with some diet hucksters and now he has books he's pushing.)


Brown rice seems to be your only food-for-Candida. What about getting more grains for calories, but also judiciously taking Candida killers with them? Raw garlic, ginger, oregano, etc.  Maybe your anti-Candida measures are harming your health in the long run, by being too restrictive and causing inadvertent deficiencies.

Highly processed grains might be better that whole grains, since there is less in them to react to.


Magnesium deficiency?
Helpful - 0
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