This should perhaps serve as an update to anyone curious about how my last year has gone, what I've understood, what I've learned. Perhaps it's a way for me to get feedback from PR.
Yesterday, Cort Johnson posted a very interesting article about the mechanisms of long Covid in the context of what researchers have observed. He summarized a preliminary finding: there is no specific "signature," or pattern of autoimmunity in long Covid patients. He draws a parallel with ME/CFS patients: there is no clear-cut autoimmune presentation, no signature of auto-antibodies, but an "array of autoimmune antibodies," mimicking the predisposition and susceptibility in each individual and rendering a 'singular sick pattern' of ME/CFS for every patient.
I spent the last year in France trying getting through a one-year program in a nursing school. I specialized in caring for the disabled. This included practicums in order to build professional experience. Until I was put on prednisone, my decade-long symptoms were inevitable.
In the mornings, I suffered from dry eye, body-wide weakness, stiff muscles, and fatigue. Throughout the day, the hours upon hours of classroom energy sent me into a crash. As was also expected, I had more erratic bowel movements (IBS), dermatological flares (seborrheic dermatitis), and poorer blood circulation. I might also add recurring, aggressive episodes of torticolis, frozen shoulder, and joint displacements due to CCI and / or unspecified connective tissue disease.
From the moment I was put on prednisone, most, or the totality of my symptoms were abated. I was re-reading French medical literature on treating ME/CFS and Fibromyalgia and noticed a section where they say that corticosteroids do nothing for fibromyalgia pain. It was striking to reconcile this with the diagnosis of ME/CFS and Fibromyalgia that a rheumatologist finally gave me one month ago, upon finding nothing on my scans or labs to indicate a specific autoimmune or rheumatic condition.
Striking until one juxtaposes the observation that long covid, or ME/CFS, or post-viral fatigue are non-specific autoimmune conditions (syndromes) with symptoms that present relative to any one person's particular health risks and health predisposition. If ME/CFS is autoimmune, then we each acquire different presentations of the same syndrome.
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In attempting to treat myself, what did I learn so far?
On a urinary (catabolites) analysis, I learned a few things:
On whole genome sequencing, I "might have two short-form 5-HTTLPR" (at gs290, in SLC6A4). This is a degenerate, repeat polymorphic region that plays into the way the body handles serotonin (apparently it is a sped-up, serotonin-transporting enzyme).
In a very costly but state-covered extensive stool analysis, no abnormal bacteria, clostridium, or parasite was found. A gastroenterologist recommended a colonoscopy anyway, which I will have early next year. I have mild pancreatic insufficiency -- this was corroborated with a Genova amino acids analysis.
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Through treatment with two medications so far, two notions have a strong basis in my test results and symptomatic experience.
Inflammation: doctor is weaning me off prednisone after one year on it. I was at high levels at the beginning of the year. Toward the second half of the year, I remained at a daily dose of 5mg prednisone:
HPA axis: the other piece of the puzzle for me. A second doctor suggested I try an SSRI (Lexapro).
When these two medications were taken together, I had effectively abated most of my ME/CFS and Fibromyalgia symptoms, including IBS.
Once I was forced off one half of the protocol, the inflammation returned. The lexapro at that dose became ineffective.
I am once again left to my own devices, tending to a body replete with problems: absolutely unrefreshing and non-recuperative sleep ; muscle fatigue and stiffness throughout the day ; poor adrenal function ; a hypersensitive immune system.
At this point in time, it is nice to have state-covered health insurance, but paired with a shy, non-progressive medical system, it does not make much of a difference.
-----
I have to figure out a way to continue to wean off corticosteroids if this is what is asked of me. In the meantime, I am considering raising my dose to 10mg lexapro.
In anticipation of a work contract next year and more early morning rises, I am throwing more at the wall to see what sticks, because I know the mornings will be a struggle. I am not waiting to see my psychiatrist in one month's time. I have ordered 10mg amitriptyline based off positive feedback on Fibromyalgia Facebook groups: it appears to help with neuropathic pain.
Lastly, I am attempting whatever I can to replicate the undeniable anti-inflammatory effects of prednisone: I am trying to order low-dose naltrexone through the UK (online consultation). They absolutely do not offer it in France... nor do they conceive of its off-label use.
-----
Something about addressing inflammation (prednisone) as well as the HPA-axis (serotonin) has been undeniably and verifiably efficient for my ME/CFS and Fibromyalgia. I cling to the diagnosis not only because I believe that it manifests differently in each of us. I also cling to it because I got there through sound exclusion: no consistently elevated CRP, no positive ANA nor ANCA, no HLA B27, no joint inflammation, no obvious viral titers (I have yet to check for enterovirus). No obvious Lyme.
In the meantime, don't hesitate to leave feedback if any of you have some. I am still effectively bouncing between doctors who are too timid to properly handle the complexity of my situation -- I have been bouncing between medical systems and countries for well over a decade.
In the meantime, I am chelating (Andy Cutler). I am trying to figure out ways to raise my rock-bottom cortisol in the morning (Genova 4 pt salivary test confirms this). I am ordering 100 mg pregenolone to trial it. DHEA is not allowed into the country here.
Thanks for reading this extremely long post. I have no idea what to expect because electing to trial medication on my own is a scary position to be in (amitriptyline ; LDN if I get it).
Yesterday, Cort Johnson posted a very interesting article about the mechanisms of long Covid in the context of what researchers have observed. He summarized a preliminary finding: there is no specific "signature," or pattern of autoimmunity in long Covid patients. He draws a parallel with ME/CFS patients: there is no clear-cut autoimmune presentation, no signature of auto-antibodies, but an "array of autoimmune antibodies," mimicking the predisposition and susceptibility in each individual and rendering a 'singular sick pattern' of ME/CFS for every patient.
I spent the last year in France trying getting through a one-year program in a nursing school. I specialized in caring for the disabled. This included practicums in order to build professional experience. Until I was put on prednisone, my decade-long symptoms were inevitable.
In the mornings, I suffered from dry eye, body-wide weakness, stiff muscles, and fatigue. Throughout the day, the hours upon hours of classroom energy sent me into a crash. As was also expected, I had more erratic bowel movements (IBS), dermatological flares (seborrheic dermatitis), and poorer blood circulation. I might also add recurring, aggressive episodes of torticolis, frozen shoulder, and joint displacements due to CCI and / or unspecified connective tissue disease.
From the moment I was put on prednisone, most, or the totality of my symptoms were abated. I was re-reading French medical literature on treating ME/CFS and Fibromyalgia and noticed a section where they say that corticosteroids do nothing for fibromyalgia pain. It was striking to reconcile this with the diagnosis of ME/CFS and Fibromyalgia that a rheumatologist finally gave me one month ago, upon finding nothing on my scans or labs to indicate a specific autoimmune or rheumatic condition.
Striking until one juxtaposes the observation that long covid, or ME/CFS, or post-viral fatigue are non-specific autoimmune conditions (syndromes) with symptoms that present relative to any one person's particular health risks and health predisposition. If ME/CFS is autoimmune, then we each acquire different presentations of the same syndrome.
-----
In attempting to treat myself, what did I learn so far?
On a urinary (catabolites) analysis, I learned a few things:
- Neurotransmitters: abnormal serotonin (below range) ; very low dopamine ; abnormal noradrenaline (below range) ; abnormal HVA and VMA (below range).
- Lymphocytes: normal CD4 count ; abnormal CD8 count (below range) ; abnormal IL2R (above range).
- Microbiome: rather healthy with exceptions -- abnormal indican (above range) -- a metabolite produced by tryptophan-dependent flora / bacteria.
On whole genome sequencing, I "might have two short-form 5-HTTLPR" (at gs290, in SLC6A4). This is a degenerate, repeat polymorphic region that plays into the way the body handles serotonin (apparently it is a sped-up, serotonin-transporting enzyme).
In a very costly but state-covered extensive stool analysis, no abnormal bacteria, clostridium, or parasite was found. A gastroenterologist recommended a colonoscopy anyway, which I will have early next year. I have mild pancreatic insufficiency -- this was corroborated with a Genova amino acids analysis.
-----
Through treatment with two medications so far, two notions have a strong basis in my test results and symptomatic experience.
Inflammation: doctor is weaning me off prednisone after one year on it. I was at high levels at the beginning of the year. Toward the second half of the year, I remained at a daily dose of 5mg prednisone:
- In terms of pain, stiffness, muscular exertion, blood circulation, energy and cognitive capacity, the prednisone eliminated all of my symptoms.
- Now that I have had to replace it with hydrocortisone (a strength-equivalent dose of 20mg, split throughout the day), the entirety of my symptoms have returned: energy problems, pain, and stiffness
HPA axis: the other piece of the puzzle for me. A second doctor suggested I try an SSRI (Lexapro).
- Last year, I attempted Lexapro but struggled so badly in terms of gut reactivity that I quit.
- I attempted it again this year and adjusted of my own accord to a low dose of 5mg.
- I've been taking it for one month now. It did nothing noticeable when taken during the day.
- Like I've noticed before, when taken at night prior to going to sleep, it made me a decisively very noticeable difference. I woke up far more 'responsive' the next day (e.g. early morning rise for work).
- This ties into what seems in my case to be an endemic deficiency in serotonin transportation.
When these two medications were taken together, I had effectively abated most of my ME/CFS and Fibromyalgia symptoms, including IBS.
Once I was forced off one half of the protocol, the inflammation returned. The lexapro at that dose became ineffective.
I am once again left to my own devices, tending to a body replete with problems: absolutely unrefreshing and non-recuperative sleep ; muscle fatigue and stiffness throughout the day ; poor adrenal function ; a hypersensitive immune system.
At this point in time, it is nice to have state-covered health insurance, but paired with a shy, non-progressive medical system, it does not make much of a difference.
-----
I have to figure out a way to continue to wean off corticosteroids if this is what is asked of me. In the meantime, I am considering raising my dose to 10mg lexapro.
In anticipation of a work contract next year and more early morning rises, I am throwing more at the wall to see what sticks, because I know the mornings will be a struggle. I am not waiting to see my psychiatrist in one month's time. I have ordered 10mg amitriptyline based off positive feedback on Fibromyalgia Facebook groups: it appears to help with neuropathic pain.
Lastly, I am attempting whatever I can to replicate the undeniable anti-inflammatory effects of prednisone: I am trying to order low-dose naltrexone through the UK (online consultation). They absolutely do not offer it in France... nor do they conceive of its off-label use.
-----
Something about addressing inflammation (prednisone) as well as the HPA-axis (serotonin) has been undeniably and verifiably efficient for my ME/CFS and Fibromyalgia. I cling to the diagnosis not only because I believe that it manifests differently in each of us. I also cling to it because I got there through sound exclusion: no consistently elevated CRP, no positive ANA nor ANCA, no HLA B27, no joint inflammation, no obvious viral titers (I have yet to check for enterovirus). No obvious Lyme.
In the meantime, don't hesitate to leave feedback if any of you have some. I am still effectively bouncing between doctors who are too timid to properly handle the complexity of my situation -- I have been bouncing between medical systems and countries for well over a decade.
In the meantime, I am chelating (Andy Cutler). I am trying to figure out ways to raise my rock-bottom cortisol in the morning (Genova 4 pt salivary test confirms this). I am ordering 100 mg pregenolone to trial it. DHEA is not allowed into the country here.
Thanks for reading this extremely long post. I have no idea what to expect because electing to trial medication on my own is a scary position to be in (amitriptyline ; LDN if I get it).
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