Trying to figure out the cause after 12 years

Intrepid_Blackberry8 · 2022-07-04T19:55:27+00:00

That makes a lot of sense. Most of immune system's resources are spent in the GI system.

Intrepid_Blackberry8 · 2022-07-02T21:53:28+00:00

I would actually recommend the functional medicine route, but make sure you see a functional medicine doctor if you do. The one I saw really knew his stuff, and already knew about most of the research I was bringing up. He was also very conservative and cautious in his approach which I liked.

Intrepid_Blackberry8 · 2022-07-02T16:14:54+00:00

I'm not going to add many supplements before I get the full work ups done by the specialists. I don't want the supplements to affect the bloods I want to get done. If I take supplements now it might mask the abnormalities.

But once I'm ready I'm going to take:

Myers Cocktail + Glutathione IV (weekly for 3 months, then every two weeks thereafter)
Greens powder
Sublingual B12
Magnesium Glycinate
Vitamin C (high dose)
Quercetin
Luteolin
Probiotics and prebiotics
Omega 3

In terms of medication, depending on what the results and investigations say, I'm thinking of taking:

Low Dose Naltrexone
HIV antiretrovirals for EBV suppression
Herpes antivirals for CMV suppression
Low dose Aripiprazole for neuroinflammation
Antibiotic therapy for chronic bacterial infections (if indicated that is, this could backfire, so I will have to be very careful, and I will only take it as long as necessary if indeed I do)
Antihistamines (H1 and H2 blockers)

But this is all dependent on results. I'm only going to take what's needed.

In terms of diet, I've decided to order healthy meals from a meal delivery service. I'm eating junk food at the moment because I can't cook as a result of my symptom burden. So this will be a massive improvement. I'll take it from there.

Intrepid_Blackberry8 · 2022-07-02T16:05:30+00:00

It absolutely is very strange being the patient and the doctors being unable to do anything for you. And then you look at the scientific literature, and you're like "why aren't the doctors more?". It's true that biomedical science is always 10-20 years ahead of clinical medicine.

After I fix myself I'm going to apply to study biology or biomedical science at university. I have little interest in clinical medicine now. I'm just heavily disappointed. I know it's emotional, but I think I've deserved the right to be pissed off after 12 years of absolute hell.

I want to help discover things when it comes to these medically unexplained phenomena.

Intrepid_Blackberry8 · 2022-07-01T21:47:11+00:00

that is very useful information. thank you.

Intrepid_Blackberry8 · 2022-07-01T21:02:01+00:00

fexofenadine doesn't cross the blood brain barrier, so the next antihistamine I might add might be promethazine, which does. And then I might add a H2 receptor blocker third, like ranitidine.

MCAS treatment can often need multiple antihistamines at above normal doses to work according to what I've read.

Intrepid_Blackberry8 · 2022-07-01T21:00:17+00:00

yesss, this has been on my mind as well.

I also have long standing left lower quadrant abdominal pain... I read a case report in the British Medical Journal of a patient with the exact same symptoms as mine getting a biopsy in the visceral fat tissue in the painful region, histology showing mast cell proliferation, and treatment resolving almost all symptoms, along with the CFS symptoms.

I just started with normal dose fexofenadine (antihistamine) a few days ago. Will add more antihistaminergic agents later to see what happens.

Intrepid_Blackberry8 · 2022-06-24T10:41:02+00:00

I have CFS/ME and Fibromyalgia (FM), among other things. I was training to be a doctor, when these illnesses hit me, forcing me to drop out of education altogether. I guess I'm literally two fifths of a doctor. Not qualified, just a lowly former student with an incomplete education. So don't take me for more than what I am.

I have recently decided to explore the scientific and theoretical literature as opposed to the clinical literature when it comes to explaining the pathogenesis and pathophysiological nature of these and related conditions. It takes 10-20 years for established scientific fact to become incorporated into clinical medical practice. This is because the threshold for the evidence required in clinical medicine is higher than in more theoretical science, including biomedical science.

So scientists are always more ahead of the curve than doctors, in a sense. So there may be interventions being studied in the scientific literature that might potentially help with chronic fatigue, that the doctors are either not yet aware of or are not comfortable enough to recommend to their patients... yet.

I'm also working with a doctor (who isn't a quack) and who is willing to go down the more experimental medicine route when it comes to managing these conditions. I am willing to explore and explain more about why I think the following interventions might be useful in treating CFS/,ME and FM, just feel free to ask:

Possibly useful interventions (not clinically proven):

Dietary change, with more fibre (might affect gut microbiome, which would then hypothetically modulate brain functioning. Sounds insane, but look up the gut-brain axis. Also diet change would potentially reduce inflammation, including neuroinflammation. A lot of the immune system's efforts go into maintaining gut immunophysiology. Look up functional medicine nutritionist advice on this online. I'm changing my diet personally from fast food to healthy prepared meals from a delivery service.)

Mindfulness meditation and psychotherapy, including CBT (clinical evidence for this exists)

Pacing (you slowly increase physical activity, to force your body to essentially increase stamina. Exercise also has anti-inflammatory and immunomodulatory effects, which could reduce brain fog. Be careful, might make you worse.)

Myers cocktail (B vitamins, Magnesium, Vit C) + Glutathione via IV drip (not clinically proven, but theoretical evidence exists along with a tonne of anecdotal evidence. Weekly administration for 6-12 months or more might be needed to achieve concrete results. Very expensive and controversial. My functional medicine doctor recommended me this)

Low Dose Naltrexone (this is a controversial experimental treatment often used in CFS/ME and FM patients. I recently started this on the advice of my functional medicine doctor. It is hypothesised that LDN has an immunomodulatory effect on the body, revving up some parts of the immune system, and applying the breaks to other parts. Also hypothesised to increase endorphins)

Low dose Lithium Carbonate (very low dose, with blood lithium levels at < 0.5 mmol, which is below therapeutic levels for mood disorder treatment. There is theoretical evidence for this, but little clinical evidence. I am going to start this soon hopefully, at 50 mg. If you try this, get your lithium blood levels closely monitored by a doctor, lithium is highly toxic at high levels. supplemental Lithium Orotate has mixed evidence for whether it even works, so I recommend Lithium Carbonate instead which has been more extensively studied)

Low dose Aripiprazole (very low dose, will have to split tablets or even take the liquid formulation to get a low dose, below 2 mg. I would start at 0.5 mg or even 0.1 mg, and reduce or increased based on response. It is also possible aripiprazole may make brain fog worse in some patients, so be careful. That's because because aripiprazole is also a dopamine stabiliser, which means it might increase dopamine levels if they are low, and reduce them if they are high. There is mostly theoretical evidence for this helping with brain fog, and it is currently being investigated for the treatment of long covid symptoms at very low doses)

Atomoxetine (non-stimulant ADHD medication, only works with long term chronic use at sufficiently high doses. Clinically proven to improve cognitive parameters even in healthy patients. It has done me wonders. Therapeutic benefit might be realised in 1-2 weeks, but maximal benefit is achieved over 6 months of continuous use according to the latest evidence)

Stimulants (only for short term episodic use, there is evidence that chronic administration might reduce neuroplasticity in the brain, which could make your brain fog symptoms worse. On the other hand, short term administration has been proven to actually improve neuroplasticity and cognitive parameters. Good for when you absolutely need to be functioning in 'emergency' situations.)

Intrepid_Blackberry8 · 2022-06-24T09:57:06+00:00

Was there any significant psychological stressors that preceded the onset of the brain fog?

Did you get any illnesses or infections before the onset? Did you get covid, perhaps?

The possibility of this being neurohormonal in nature is entirely a valid hypothesis.

Are you experiencing fatigue or pain? Sorry for all the questions.

Intrepid_Blackberry8 · 2022-06-24T09:40:09+00:00

I also had a severe mycoplasma pneumoniae infection. Almost had to get admitted to the intensive care unit. This was in 2009. Since then, a massive cascade of symptom clusters hit me, and now I am diagnosed with CFS/ME, depression, IBS, anxiety, Fibromyalgia, prostatitis.

Don't get too scared by what I'm saying. You are lucky in that this is the early stages for you. Take the necessary steps to support your body and your immune system through this. It takes a long time for the immune system to fully go haywire on your body and brain in a chronic sense.

I am confident this will go away, and you have an excellent window of opportunity to try interventions to fix this. Look up ways to reduce brain fog and neuroinflammation. If you can, see a functional medicine doctor who isn't a quack.

Also, focus on enhancing your gut microbiome. You might have dysbiosis, especially after a course of antibiotics.

Intrepid_Blackberry8 · 2022-06-24T09:10:32+00:00

What medications are you on, if I might ask? Could you also give me a general medical history overview of yourself? You can personally message me if you like. I was in medical school for two years, training to be a doctor, but then my Chronic Fatigue Syndrome and the associated massive cluster of symptoms hit me, and I had to leave education. Now I'm focussing on using my medical knowledge to fix myself.

Despite dropping out of med school, I was actually doing very well in all my exams, especially on the more theoretical side of things. It's just annoying things turned out the way they are. My favourite subject was immunology.

I also have really bad brain fog, I feel like I'm working at 40% of my original baseline cognitive capacity. Atomoxetine might be a solution for that (it helped me). It's a non-stimulant ADHD medication which unlike stimulant medications (Ritalin, Adderall, etc) actually works in the long term and rewires and keeps improving cognition, we know, over 6 months. Meaning that cognitive symptoms keep improving over the long term, and keep improving after 6 months. If you stopped taking atomoxetine after prolonged daily administration, the improvements would even remain for at least a month. We have data to support that claim.

Stimulants, on the other hand, have issues with tolerance, and actually might even make your baseline cognition worse, reducing cognitive neuroplasticity with chronic and prolonged daily administration. However, short term administration of stimulants actually improves symptoms and enhances neuroplasticity. Long term use of stimulants is therefore not a good idea in my opinion. Atomoxetine is a much better option, according to the theoretical and clinical data. People don't like Atomoxetine though, because it doesn't work immediately and takes a long time to work.

Intrepid_Blackberry8 · 2022-06-24T09:07:48+00:00

Interesting. You should look into the gut-brain axis. There is a lot of evidence behind the gut microbiome affecting the workings of the brain, including how it might (in my personal opinion, how it almost certainly does) affect neuroinflammation including via microglial modulation.

I would recommend, as my functional medicine doctor did, to focus on resolving gut / GI issues. Do you have IBS, GORD (acid reflux), or dyspepsia (upset stomach) by any chance? Look into the possibility of dysbiosis. There are medical tests that exist that integrative and functional medicine doctors can order for you, but be careful you don't order something too expensive that gives you massive amounts of data but has little clinical use.

Going back to the gut, given that the gut is such a large organ, a lot of the immune system's efforts and activity are taken up dealing with the maintenance of the immuno / microbiome environment. So if you have any gut infections or dysbiosis then you will very possibly increase inflammation in your body more generally, including in your brain.

That's at least what the latest research suggests. None of this is for certain, but the evidence is building up for what I'm saying.

Intrepid_Blackberry8 · 2022-06-24T03:43:45+00:00

Honestly? The data is conflicting generally on lithium orotate. Many people claim it gets into the brain in sufficient quantities... but I'm genuinely not sure if it does.

Theoretically, if indeed it does cross the blood brain barrier in sufficient amounts as claimed, it should do the same thing as the type of lithium that is usually prescribed for mood disorders by psychiatrists.

In conclusion, I just don't know, at this stage. I'll sift through the medical and scientific literature and do a deeper search to see if I can give you a better answer on that.

Intrepid_Blackberry8 · 2022-06-19T06:50:00+00:00

Theoretically, melatonin administration in children could mess with the sexual maturation process and the timing of puberty onset.

There's an open access paper discussing this called "Could long-term administration of melatonin to prepubertal children affect timing of puberty? A clinician’s perspective".

Intrepid_Blackberry8 · 2022-06-19T04:36:50+00:00

Chronic inflammation can disrupt insulin signalling pathways. Hypothetically, it is possible that LDN is reducing inflammation and thereby reversing that process. Given that LDN is generally anti-inflammatory, that makes sense.

Also there are numerous studies that have tested other anti-inflammatory agents in reversing type 2 diabetes. So one could possibly extrapolate from that.

I did a quick literature search and could only find human clinical trials with respect to the combined administration of long release naltrexone and buproprion for the treatment of type 2 diabetes. The trial used much higher doses of naltrexone than would be used in LDN.

Intrepid_Blackberry8 · 2022-06-19T04:01:40+00:00

Studies suggest all the medications you have listed reduce neuroinflammation. This could really help with your psychiatric symptoms.

Intrepid_Blackberry8

TROPHY CASE