Choline at the nexus of adverse reactions, is it ME?

[optative]

I've been diagnosed with Lyme Complex and Lupus. Based on my response to treatment, I'm more confident in the former dx, as symptoms of Lyme, Bartonella, and Babesia all flare up reliably when I take naturopathic or pharmaceutical antimicrobials.

Since the start of this year, I've been developing adverse reactions to supplements and meds, mostly those that affect acetylcholine. The symptoms don't match Lyme, and after months of research and progression I'm finding more in common with ME, though notably I have no post-exertional fatigue. I don't know what to make of it all, or where to turn for advice. This is an outline of the symptoms:

Acetylcholine
CDP-Choline - Taken a few times since 2015 without incident, it now causes weakness, nausea, and muscle cramps several hours later.
Codfish - Eaten for years without issue, now causes mild migrating cramps several hours after consumption.
Alpha-GPC - Irritability and migrating myalgias.
Sunflower Lecithin - 1 tablespoon TID, developed raw tingling around lips shortly after dose, then sharp needle-like cramps in thumb pad muscles later in day. That night had insomnia, reflux, and migrating raw myalgias.
Sunflower seeds - Eaten for years, following the reaction to sunflower lecithin they now cause the same symptoms.
Phosphatidylserine - No adverse reaction.
Claritin/loratadine - Taken for years for seasonal allergies, now causes severe drowsiness, hallucination, and memory loss to the point of delirium.

Misc, these reactions don't fit with a sensitivity to acetylcholine
5-HTP - Horrible irritation in throat, almost to the point of choking. Took in previous years without issue.
l-tryptophan - Painful migrating dull muscle aches throughout muscle groups (abdomen, upper back, legs) and a serious worsening of existing neuropathy. Again, had no reaction to this supplement in the past. This reaction wasn't transient, it's been a month and the increased neuropathy remains.​

Ideally I would go to a neurologist and have an answer, but I suspect most of them would shrug and send me on my way. The food intolerances (cod, sunflower seeds) following the use of supplements is almost like an allergy. I do get hives and itching from high histamine foods, and MCAS is associated with Bartonella.

Hello @joejack102! I saw your thread about choline, I am in the same boat, or one very nearby.

 

[Moof]

Have you been checked out for APS as well as lupus? (They often seem to go together.) A relative has APS, and often reports those weird migrating muscle cramps.

It sounds as if you've developed a lecithin sensitivity, which can happen with almost any food. Maybe knock off all your supplements for the time being, so that you can get a handle on what's causing what?

Loratadine is known to cause drowsiness with hallucinations – it's an unusual side-effect, but it can happen. I've only experienced it once, but it was quite frightening. I found I was fine taking cetirizine instead.

Post-exertional fatigue/malaise is a cardinal symptom of ME, and results from both physical and mental exertion. If you don't experience it, it's unlikely you'd be diagnosed with ME. It can be less than obvious in mild cases, though – when I first became ill, it never occurred to me to associate the sore throat and slightly swollen neck glands I kept getting with the activity I'd done in the previous 48 hours. My symptoms were mild to begin with, and it was really puzzling that I could wake up with a swollen throat that would then disappear by mid-morning if I rested up.

 

[Hip]

I've been diagnosed with Lyme

Is that via the CDC-recommended two-tier testing, or using labs like ArminLabs or IGeneX which have a high false positive rate (see here and here)?

 

[optative]

Have you been checked out for APS as well as lupus? (They often seem to go together.) A relative has APS, and often reports those weird migrating muscle cramps.

It sounds as if you've developed a lecithin sensitivity, which can happen with almost any food. Maybe knock off all your supplements for the time being, so that you can get a handle on what's causing what?

Loratadine is known to cause drowsiness with hallucinations – it's an unusual side-effect, but it can happen. I've only experienced it once, but it was quite frightening. I found I was fine taking cetirizine instead.

Post-exertional fatigue/malaise is a cardinal symptom of ME, and results from both physical and mental exertion. If you don't experience it, it's unlikely you'd be diagnosed with ME. It can be less than obvious in mild cases, though – when I first became ill, it never occurred to me to associate the sore throat and slightly swollen neck glands I kept getting with the activity I'd done in the previous 48 hours. My symptoms were mild to begin with, and it was really puzzling that I could wake up with a swollen throat that would then disappear by mid-morning if I rested up.

I've had coagulation testing, I'm not sure if antiphospholipid antibodies were tested also.

As for the food triggers, only soy and sunflower lecithin caused it, other sources like cauliflower don't. I have no choice about stopping the supplements, the symptoms are quite uncomfortable. I haven't felt inclined to try another antihistamine, once my allergies necessitate it I'll give cetirizine a try.

It's interesting you mention sore throat, I have that symptom and wasn't sure what was causing it. The pain can be a mild raw burning or a clamping sensation towards the roof of my mouth. I'm always fatigued so I tend to just force my way through it, rhodiola and Cytomel have helped somewhat.

 

[optative]

Is that via the CDC-recommended two-tier testing, or using labs like ArminLabs or IGeneX which have a high false positive rate (see here and here)?

My ELISA is always positive or equivocal; the WB is positive on 66 and 41, and equivocal on 39. I've never had a clearly positive result on Lyme-specific bands. I've been tested through IGeneX, LabCorp, and Quest.

My babesia duncani titre is always 1:256, blood smear is negative. Bartonella is also negative, but has the strongest herx response of any of them when I take an antibiotic or herb indicated for it.

I have a long history of tick bites, cat exposure, and one flea infestation. Reading through here the past few days I was surprised to see antibiotics being used for ME, it's possible I respond to them due to infections other than Lyme.

 

[Hip]

My ELISA is always positive or equivocal; the WB is positive on 66 and 41, and equivocal on 39. I've never had a clearly positive result on Lyme-specific bands. I've been tested through IGeneX, LabCorp, and Quest.

Unfortunately I do not understand Lyme testing enough to known what the bands mean; but it's worth pointing out that ME/CFS symptoms are also linked to infections with coxsackievirus B, echovirus, Epstein-Barr virus, HHV-6, cytomegalovirus, parvovirus B19, and Chlamydia pneumoniae.

 

[Moof]

I've had coagulation testing, I'm not sure if antiphospholipid antibodies were tested also.

In the UK at least, they would only diagnose you with APS if you'd actually had a clot – but it's worth checking whether they have tested for antibodies next time you see your doctor. Often they do this anyway as part of lupus testing.

It's interesting you mention sore throat, I have that symptom and wasn't sure what was causing it. The pain can be a mild raw burning or a clamping sensation towards the roof of my mouth. I'm always fatigued so I tend to just force my way through it, rhodiola and Cytomel have helped somewhat.

My ME throats haven't ever been severe, even when I'm very unwell, but they're quite distinctive. For instance, I've never had a 'real' throat infection that came and went throughout the course of a day, or that grumbled away at a low level for months without ever getting better or worse. With an ME throat, the swellings in my neck glands are out of proportion with the fairly mild soreness, too. My throat's never uncomfortable enough to make me wish for anaesthetic lozenges, but the swelling can be really significant when I first wake up.

It's never a great idea to force your way through fatigue on a long-term basis. Even if you haven't got ME, it could put you at risk of developing it; if you have got it, forcing through it will only make it worse. It took me many years to get diagnosed, and by that time I'd become so ill that I've never recovered. It's been more than four decades now! I'd always advise people to pursue a diagnosis, and in the meantime, to allow themselves rest whenever possible.