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Frequently Asked Questions

New addition 10/14/2023 A background in the form of a 20 page letter, if that’s helpful or skim it or skip it entirely http://visualchemy.gallery/email

Introduction - (this faq still a draft)

This report entitled 'Frequently Asked Questions' is not about the physiology of CFS (Chronic Fatigue Syndrome), but the psychological and experiential nature of it (as told from my vantage point), in the hopes that friends, family, researchers and advocates may process, and absorb the symptamological presentations of CFS (and similar Autoimmune illnesses) in individuals and their communities.

What is the nature of the illness' psychological symptoms? What is at play, who is effected and how? What is at stake by disruptions in social order (both work related and familial) that CFS ensues?

I'd like to begin by thanking all of you for your patience and support during this arduous/confusing journey (especially) of the past 8 years (and further) as I've discovered what my condition consists of - that it is called 'pTBI-cf', or 'Post Traumatic Brain Injury Chronic Fatigue'.

I've learned that the condition of chronic fatigue may present years (even decades) after head injury and that it is a common effect of what is termed 'Secondary Injury' following head trauma. Secondary Injuries progressively affect differing systems in a 'cascading' manner (similar to the condition of CFS).

As you know I had either been: 1) not diagnosed then left on my own after Doctor visits to figure it out, or 2) misdiagnosed (by myself and others) as having Lymes, environmental illness and finally misdiagnosed as CFS (I don't have CFS, I have pTBI-cf). During this time I apologize for the confusion and this webpage will, among other things, explain the twists in the story that led me to believe each erroneous diagnoses.

pTBI-cf, like CFS can be viewed as a collection of (related) dysfunctions (why CFS is a 'syndrome').

Though I don't have CFS, I share many common traits with CFS patients including associated comorbid conditions (such as POTS, sleep irregularities, PEM, IBS, rashes and markings, etc.).

To further complicate matters, CFS has different subtypes (ME for instance, is arguably a form of CFS). As noted, CFS shares traits with Autoimmune disorders, though it encompasses different networks, as outlined in my report located at http://CFSHelp.info .

My injury was in 1994 and as Doctors hadn't mentioned the fatigue as relating to my head injury, and as there were diverse symptoms that seemed infectious in nature (rashes, dizziness etc.)...and also as I didn't yet know about the long term Secondary Injury cascading effects, I thought the effects of head injury would present immediately not decades later - so I didn't pursue head injury as the 'vector'. I sought other culprits.

That I have now the name of my condition I've made tremendous strides and am a hairsbreadth away from finishing the medical recommendation of preferred treatment to present to my Doctor. The great news is that there are many therapies to endeavor (and the Doctors I visited would best have consulted the same textbooks I have, as typically the earlier therapies are engaged, the better the outcome).

Being a report regarding psychology and experience, let's please start there.

On one hand you have the viscuous plastic elastic nature of reality, then a constant radio station mind playing that are thoughts, then your gut feeling, your heart aspirations, spirit and all manner of psychologies and psychokinetics (e.g. dreamland, astral realms etc.). I call it 'many minds' (the wide gamut of which I'm saving for my next posting ;) ).

If that doesn't already sound like a juggling and balancing act we're performing, imagine then throwing in a head injury (or autoimmune illness), and as you shall read, new elements emerge. Thank you for allowing me to share my story and here are frequently asked questions:

What it's like

New addition 10/14/2023

from letter: "As you will ascertain by the dated references that this letter took longer to complete than expected, as it was a difficult month for me, with 90% of my time spent sleeping, and during waking hours having little focus. In a month I had three good days where I was both awake and focused, hence the tardiness of the letter

I had a flare up that lasted a few days which was awful, I was feverish and achy and it felt like a bad flu. It affects me not just physically but mentally as well, and after many years, spiritually. Then after the flare up I had a productive day, but likely pushed myself too much to make up for the lost days and all the messiness pilling up so then I had PEM (post exertional malaise, a fundamental facet of the CFS experience) and slept all day and night for two days. So mostly I've been sleeping. Most days I take Stevie out for a walk, then often that's about it. Of course we're all hoping on the therapy with Dr Chan. By the way, I hear good things about an acupuncturist in Petaluma as well, perhaps with Dr Chans' approval I will book an appointment there to supplement my therapy. Then of course there are Patricia's recommendations of Jorgen Sacha, as well as an intense therapy (requiring a month in the jungle) which I've asked her to please share the details about with you

When my CFS illness began thirteen years ago, it had been intolerable (in the early years I was turning a literal shade of green and losing weight, finding myself unable even to walk across the room, etc), then I stopped taking Cymbalta and that helped immensely, it was my first 'break'. I then extracted myself from a relationship that was a near constant source of stress and that was another 'win'. I found and used Xifaxan which helped with the IBS which in turn made the CFS more bearable (strangely the two are connected, you can't have an official CFS diagnosis without exhibiting IBS as well). Things were still extremely difficult, but over time I learned a bit about managing CFS, such as that with exertion or exercise I would experience PEM (Post Exertional Malaise), so I became conditioned to avoiding both. Between Cymbalta and Venlafaxine I booked an appointment with my psychiatrist who wouldn't see me for a month and not being on medication for that month was extremely difficult, I was in a state of waking nightmares every day. It turns out mental or emotional stress are also huge CFS triggers. My third biggest break came when I found Kratom.

After said improvements, I got Covid then 'long covid' on top, and it turns out the effects and actions of 'long covid' are exactly like cfs (astrocyte build up, breakdown of the blood brain barrier, serotonin storm, disruption of neuronal stemcells) so flareups have been more frequent and severe, for instance, around seven months ago I spent two weeks straight on the couch only getting up to stumble dizzily to the bathroom, it was awwwfuuul

For those interested I have written a list of other possible vectors, physical emotional, spiritual, environmental that likely play(ed) a part in either initiating or exacerbating CFS. Seeing as it's currently written in my shorthand, I will type it up upon request (it's about 30 items long). On a side note, are coffee and cigarettes vectors? Those with CFS don't process acetylcholine correctly leading to a Nicotine deficit which all the receptors throughout our bodies crave, this is the only reason I have cigarettes and would gladly quit and coffee.

Unless you experience CFS you will have no idea how soul crushing CFS is, it's not just a lack of pep, you are drained of all energy as if drained of blood. Qi or Chi is the fundamental Life Force and without it, (as with CFS) you feel awful like a zombie and the opposite of Life, I wouldn't wish the experience on my worst enemy. Feel when walk as if 50lb weights hang on limbs, chest and inside the head. As bad as my case is there are examples (such as the notorious case of the Doctor's son, a poor guy whom can only write symbols on the bedspread). I'm doing this push for recovery this research and letter for them as for my own redemption. I feel as if part of me is missing and I seek to recover, I look to and sometimes feel a larger Nature Spirit, I consider myself a Nature Spirit Animist like Druids of yore, (I'm not sure there's many of us in the modern 'civilized West'. There is a great imbalance in this world 30 millions strong shut in with CFS (not counting 'long covid' patients) that are unheard and require justice (that number is twice as numerous if including those with Fibromyalgia, a closely related illness). If and when I am successful in beating CFS, consider saving this letter as it will count as a 'Rocky Balboa' story (the boxer in the film 'Rocky'), and to me the ultimate Rocky story

A sticky hatch is that everyone wants me to stop Kratom. I honestly don't see why, out of all the supplements and medicines which I've tried over the years it's the only thing that helps (well Maritime Bark extract helps a little, as does focus factor, Sativa marijuana though with awful side effects and occasionally Armodafinil). Kratom is the only thing that gives me energy, helps me focus and dampens OCD (even better than the Venlafaxine which I'm taking). However, for the morale of the group I will stop, perhaps in a week on Thursday (I'm just waiting to experience two to three days in a row where I feel relatively ok to have the mental fortitude to take that on). Dr Chan, reviewed tests which evaluated my digestion and in finding no glaring issues concluded that it is the Kratom causing IBS, and while Kratom use does lead to constipation, I question this assessment as I've suffered IBS long before CFS as well as before during and after Kratom use. The other advantage to quitting Kratom besides constipation is I'm then eligible for Jorgen Sacha and another month long more in depth therapy performed in the jungle.

When I have a 'flare up' it doesn't matter if I take Kratom or not, it has no noticeable effects. Also if I have overexerted and experience PEM it also won't do a dent, but on regular days it is extremely helpful, I don't know when I will have a flare up or why, and I seem to have them about the same amount as before I took Kratom. There are therapies that if taken before physical exertion theoretically prevent PEM (on the 'PEM busters' page) which I'm interested in trying. Last week I knew I would have a flare up when I saw the Granula Anuloma (a type of rash) appear, I don't think it was from Kratom. Three weeks ago when I attempted to stop Kratom use outright, I made it almost halfway through day two and had decided to sleep off the rest of the day to day three when I came home to find sewage had spilled up out of the bathtub and toilet out into the hall and my room. I couldn't let it sit there, so like Popeye with Spinach took Kratom and cleaned for eight hours. I'm hoping to replace Kratom with a different medicine (perhaps an Opioid receptor agonist, or medicine capable of increasing the amount of blood flow to the brain as Kratom does considering CFS patients lack blood volume and blood flow) yet so far what I've tried hasn't worked. If told I wouldn't have CFS if I give up Kratom, I certainly would, it is only to counter CFS that I put it to use. That said, I do not mean to cause a fuss and concern family by my dependence on it, which is why I've set a quit date. I only ask that if symptoms don't improve and no new medicines or therapies help that after a year I be allowed to take it up again.

It isn't that medicines and therapies aren't there, it's that only clinics will see you, as regular doctors have nothing to say or suggest, so the patient has to research on their own (without having medical knowledge and tired with CFS to boot). Three previous unsuccessful attempts at care took place ten years ago with Marina Del Boccio then her mentor Lawrence Fines and finally the Holtorf clinic where after paying for each with several months of therapy (each super expensive and ineffective) I ran out money

I don't consider myself a complainer by default, rather considering the length and magnitude of this ordeal I would say that mostly I've kept a stiff upper lip. That to say I wish for better circumstances and look forward to an era clear of this so that I may reconnect with you in happy ways (I miss dancing the most!

Results of head injury leads to personality changes, for me it was the development of OCD that became incrementally worse. For what OCD is like, please refer to my journal http://cfshelp.info/faq. In short, OCD is like a panic attack that, for me has lasted thirty years, it's the first thing I think when waking and continues like a radio station until I go to sleep. It feels like I'm in a war with bombs going off, yet no one knows. Relief in the form of Ketamine, rTMS sessions, the monthlong venture in the jungle or psilocybin microdosing therapies are very much welcome, as are the non medication mediated states of 'Enthia' (a state of general 'breakthrough' wellness

People do a thousands of things in a day, I do one or two things a week, unless it's a good week, then (with Kratom) I may do up to 30 things that week (washing dishes counts as between one to five things, depending on my level of exhaustion, as does laundry), and shaving counts as one thing, vacuuming, writing a letter, reading, etc). I often feel overwhelmed by the things pilled up after having been sleeping for several days.

It's a daily struggle. There are pockets of joy here and there

First off, I want to acknowledge that it is difficult to see me this way day in and day out over years, I apologize. Second it's confusing when on good days it seems like everything's normal and I interact regularly (charming, joyful etc) as if hadn't just been experiencing crisis etc, then switch back inexplicably the next day, like jeckle and hyde. Third, as I've explained before when I'm low energy I am unable to fight OCD and become extremely sensitive, and you have to walk on eggshells around me, I know this is trying. I'm doing what I can to address both my physical condition and just as importantly the mental dimension to this. I again appreciate your patience and forgiveness for outbursts when I seek to protect the shreds of sanity I retain while presented with difficult words and conversation topics etc. When I am strong enough such visual or verbal triggers roll off like water on a duck's back, but until I may consistently display physical (and therefore mental) fortitude and strength I can be somewhat unpredictable. I do my best to keep whatever promises I make, even if it takes years to fulfill.

Everything I do is difficult considering my lack of energy, focus and brain fog and OCD, even small actions are a big deal. It's a lucky day when I accomplish one thing and I've come to resent that most people perform between a dozen to a hundred per day, (for instance it took more than a month to write this email and yes while it is long, I otherwise would have put it together within two to three days, four at most). Doing one phone call, or one load of laundry, sometimes that's my whole day (on a 'good' day that is) I feel ineffective, powerless and ultimately like I don't belong

I hardly go out, I certainly no longer join or attend groups or attend social events nor venture to locations where I would socialize and have the opportunity to meet and talk, etc, I don't talk on the phone or chat on computer, so I'm stuck watching tv as books require too much focus

I don't know I'm having a flare up until I'm well into it, as I keep hoping to shake off the light headedness and drowsiness until a day or two has proceeded (which is when I realize I'm experiencing a flare up and stop fighting it). Flareups then continue sometimes to three, or 7 days, and this is distressing in itself. When the flareup has completed I'm left processing the trauma for a couple days, not feeling like picking up items from my to do list, instead turning to pleasures to soothe.

Even on good days I often feel awful all day. Being ill has become a lifestyle. As mentioned, on good days I'm often processing the trauma of just having been in a flare up. Picture a bad flu, really picture how odd and awful you feel, with the inability to focus, work, socialize and having an awful mentality and outlook etc, imagine that for a year or more (as I often feel like crap on good days as well)

Yet some days are nice, today for example seems ok, so the trick is to get a few in a row so I can pick up where I left off in order to see tasks through

Understandably, I'm depressed and traumatized

I have been trained since nine to fight via Martial Arts, and this by far has been my greatest battle

I sleep so much that I have recurring dreams which include recurring locations and characters that even have character development (which reminds me of a myriad of scifi plays where astronauts stuck in cryopods wake in a computer dream interaction, for instance. There are many variations on this trope).

It's personally difficult for me to not produce very much, instead mostly just consume (arts and letters'), something I've always been philosophically against

Then there's the social isolation. It's amazing one person can endure so much for so long, and I feel I deserve a medal of valor

Currently my self esteem is shot, I don't bother taking on any endeavors, and on top of that by the standards I've set for myself my physique is underdeveloped and overweight with embarrassing bellyfat, though I can't exercise it off as exercise leads to Post Exertional Malaise which knocks me out and feels awful, (like the worst hangover you can imagine, where while experiencing it nothing makes you feel peaceful or joy and you feel on edge from stimuli just like hangovers

What I’m currently engaged in or interested in

A background in the form of a 20 page letter, if that’s helpful or skim it or skip it entirely http://visualchemy.gallery/email

Most pertinent from letter 'out of all the supplements and medicines which I've tried over the years Kratom (the white strains such as ‘green malay’, not red) the only thing that helps (well Maritime Bark extract helps a little, as does focus factor, Sativa marijuana though with awful side effects and occasionally Armodafinil). Kratom is the only thing that gives me energy, helps me focus and dampens OCD (even better than the Venlafaxine which I'm taking

I'm now enrolled in a program of Cranial Sacral therapy, a helpful Reiki type healing touch and balancing, complete with prescribed visualizations I do at home, mixed with a bit of counseling during sessions, and look forward to a longer term relief via the proficient care of Dr Chan, the practitioner and her clinic, via a new regimen of antiviral treatments such as higher dose IV of vitamin C, and therapies such as HBOT, brainscans, Ozone perhaps hemotherapy etc. In the meantime I've been incorporating some new prescribed supplements and medicines, including some which I've avoided because I had either experienced strong reactions to them, or they require being taken with food (which I generally avoid because I'm always tired immediately after eating). Also, if I'm not careful the pills and supplements have me feeling nauseous which would also ruin my day.

On a happy note for the first time in 12 years I took a nap and woke feeling somewhat refreshed (a hallmark of CFS is that no matter how much sleep, you never feel refreshed and replenished). What have I done differently this time? Perhaps the Itraconazole and xifaxan, Taking Sacha Inchi protein, Pym pills (with Acetyl L Carnatine HCI, Tyrosine, L Taurinbe, L Theanine, L Glycine, Zinc Glycinate, Vit B6 Pyridoxine HCI, Vit b12 Nethylcobalamin). Perhaps it's the pills taking from clinic (ATP 360 capsule, Tri-fortify Glutathione gel, Pure Omega Ultra HP softgels, Active B-complex capsule, Tru Niagen® Pro 500, IVATP and IVATP2 and Injections of NAD and high dose Vit C). It may be that the two months taking econugenics Modified Citrus Pectin and ecoProbiotic had a delayed beneficial effect.

I Stopped taking Lorazepam which was possibly a trigger, and avoiding triggers such as switching from wheat base to rice based (gluten free). Psychologically knowing I've been cleared, and employing guidance meditations (such as the parable of lifting stones) perhaps, it's been three days since I wrote this and strangely I feel somewhat ok for the first time in longer than I can recall

I've been focusing on these therapies full time and there's much homework still to be done. On top of the tests I've completed, there remain two more home test kits to complete. I've largely been waiting to perform the tests after a baseline of feeling ok for two or three days in a row (in terms of regular sleep and eating) to record an accurate representation. There remains to ordering superfruit, completing another labdraw, an online test, requesting notes on a scan taken previously, perhaps a biome check and perhaps fecal transplant, figuring out which pharmacy to send Itraconazole (I requested the prescription to be sent to CVS but they didn't receive it, I'm not sure if Kaiser accepts outside prescriptions and I couldn't ask the clinic as it is closed Friday, etc), snore surgery or implementing an anti apnea device, booking a local acupuncturist, meditative paid sessions in an EMF proof crystal 'castle' in Larkspur and eventually when feel up to it local Chikung group, hormone therapy, chelation, detox, FIRS (Far infrared sauna), parasite cleanse, as well as other supplementation and medicines to try (for instance there's a supplement 'andrographis' that appears to have CURED several CFS sufferers. I have and would take it, though I'm afraid of the typical initial reaction). I'm also interested in Nimodipine, Cerebrolysin, Donepezil, Amantadine, Memantine and other nootropics. Details on these can be found on the 'Supplements and Nutrition' page https://cfshelp.info/8-supplements-and-nutrition.html, 'Personal Plan' page https://cfshelp.info/personal-plan.html, and 'Other Medicines' https://cfshelp.info/33-other-medicines.html pages

for IBS there's a new medicine that helps IBS called Isbrela which I've requested. Other medicines besides Isbrela on the near term radar to consider are in the Psychiatric arena. For instance, for generalized anxiety I like Lorazepam but it knocks me out, (and long term use may lead to dementia!). My current psychiatrist is inept and my Venlafaxine barely works for my OCD, recently I spent half an hour with his nurse practitioner going over many observations, issues and ideas and things to try and she asked many questions, she said she would pass it along to the doctor, but when he replied it was only half a sentence long. The psychologist I was assigned to is equally terrible, he would hear me for an hour then in an accusatory tone bordering on anger, zero in on a small detail that had little relevance to the overall conversation. Twice I have had counselors whom I've had good rapport with but in both instances they moved away. I welcome any relief in regards to the OCD, for if it weren't for invasive thoughts (a hallmark of OCD) I wouldn't think at all, my only escape had been Martial Arts and dreams, but nightmares until recently interfered and PEM prevents access to Martial Arts. I used to rely on Karate to balance myself out, but because of PEM couldn't, so then I thought perhaps Taichi, but after a class had PEM for a week and a half.

Some of the issues I brought up with the psychiatrist include the question, of whether I have Bipolar disorder or Cyclothymia (which could be called 'Bipolar Lite') for which I have tried the over the counter type Lithium but it made me very tired). When I saw I could not bring Kratom into the country for my trip I asked with trepidation about stimulants such as Vyvanse, but was only told to stop Kratom. Vyvanse has helped many CFS sufferers as reviews can be seen here https://www.cfshelp.info/15-allopathic-medicines.html (though I am remiss in taking stimulants, I hate how they feel). I recently switched my Kaiser location (and doctor team) and had a phone appointment with a new Kaiser psychiatrist who has prescribed a higher dose of Venlafaxine, and eventually will try Memantine which has had success with her colleague's OCD patients (and is something I've been interested in to address the head injury). Also interested in microdosing Psilocybin to help mentally but as if not more importantly boost energy levels as CFS therapy

Ketamine is a psychotropic medicine I pursued as therapy in a debacle involving a Berkeley Doctor who legally stole our money for the two sessions he accepted, wherein, after pouring my heart out to him casually declared that he wouldn't work with me (though Ketamine therapy was clearly listed on his site). I am still interested as with OCD I've been in a near constant state of fear for decades. I often have to retrace my steps, even in writing must I push through. Fortunately I don't have the daily nightmares as I had endured for decades as well (and 70% of the nights having nightsweats and night terrors where I was fully engulfed in a nightmare with all senses active and waking up screaming and shaken, such that sleep wasn't restful), but I still fight a lot in my dreams, often kicking and punching before being asked to stop by waking me up. After my head injury my OCD has become progressively worse every year. I employ radical philosophical thinking to counter the internal torrent of despair, as since my head injury my perceptions and psychology are always hyperintellectual, instead of a common way of being that 'goes with the flow' (likely brain plasticity is connecting regions out of normal order to cover for the damaged regions, see faq writeup http://cfshelp.info/faq). I can hardly imagine what it's like without severe ocd anxiety and it's hard to believe some people think and live clearly, it's my default state, and there are not enough comedies and happy media to help alleviate my perspective. I used to balance to feel whole and clear (even transcendental) while practicing Martial Arts, but as stated now with even easy walks I feel slow, so slow and so weak. Another non pharmaceutical approach to OCD is rTMS therapy https://cfshelp.info/70-transcranial-stimulation.html

1) But you look ok, and seem to act alright in social situations and at work

2) What's it feel like for other patients?

3) Haven’t you seen doctors to help with this? What do they prescribe?

4) You keep changing your mind about what you have, are you a hypochondriac?

5) What does it feel like for me?

6) What are you doing about it?

7) What's it like for friends and family?

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For a full report on CFS and pTBI-cf, please visit CFSHelp.info