Another disease with PEM?

[Learner1]

totally believe that there are two main subgroups - hyper and hypo immune as you put it, and then other subgroups within that.

Some of us are immunodeficient and have autoimmunity as well.

I think there isn't strong consensus on what cytokine is low and what high in the cytokine studies that have been performed on ME/CFS patients. I reckon we are still guessing a bit, just like with autoantibodies.

This is true. Many of us have very different combinations of cytokines. My IL-1b and IL-6 have never been high, butvibhad several others high that were interrelated and indicated autoimmunity.

Because of a chlamydial infection, I was given ciprofloxacin in January 2016 and got floxed

This is not a proper treatment for Chlamydia infections. It took 3 different non-fluoroquinolone antibiotics, azithromycin, doxycycline, and rifampin to go after it, as they work on different life cycle steps of the chlamydia. Otherwise, it comes back. Have you been retested lately?

• Another hint (for a completely different search) is you mentioning chlamydia AND hhv-6. Both have their own ways of evading our immune systems, but they also have been found to interact. Dr. Bhupesh Prusty has worked on that.

Imbalanced Oxidative Stress Causes Chlamydial Persistence during Non-Productive Human Herpes VirusCo-Infection

Chlamydia trachomatis Infection Induces Replication of Latent HHV-6

Good point! I had both co-occurring and treating both very much helped.

The sudden exercise intolerance was brought on by a vaccine.

I recently had my 2 COVID vaccines reactivate HHV6 - it was PCR positive, then went negative.

I also had 4 years of stress prior to the vaccine. and a minor head injury. I have tested positive for EBV and CMV i actually managed to get the test in a crash and had active CMV in the crash.

Any stress or trauma can weaken the immune system a bit and cause these viruses to re-emerge. I hope you got them treated as they alone can cause ME/CFS symptoms....

On another note HRV monitoring is very important for athletes training and no one, even healthy people, should poo poo it.

Not if one is on certain drugs. I've found both beta blockers and benadryl artificially lower my HRV, making it useless.

 

[Martin aka paused||M.E.]

Some of us are immunodeficient and have autoimmunity as well.

This is true. Many of us have very different combinations of cytokines. My IL-1b and IL-6 have never been high, butvibhad several others high that were interrelated and indicated autoimmunity.
This is not a proper treatment for Chlamydia infections. It took 3 different non-fluoroquinolone antibiotics, azithromycin, doxycycline, and rifampin to go after it, as they work on different life cycle steps of the chlamydia. Otherwise, it comes back. Have you been retested lately?

Good point! I had both co-occurring and treating both very much helped.
I recently had my 2 COVID vaccines reactivate HHV6 - it was PCR positive, then went negative.

Any stress or trauma can weaken the immune system a bit and cause these viruses to re-emerge. I hope you got them treated as they alone can cause ME/CFS symptoms....
Not if one is on certain drugs. I've found both beta blockers and benadryl artificially lower my HRV, making it useless.

1. Totally agree. When I was moderate I inhaled books about psoriasis and autoimmunity and it has nothing to do with a strong or weak immune system. You can have AIDS and suffer from psoriasis…

2. Yes now I know that too. But @Learner1 you won’t believe it: they gave me both! Back then I didn’t control docs. Big mistake.
i monitor my chlamydia. Waiting for the current results. Has always been negative. Pneumonia is a bit questionable though. Tricky to test accurately.

3. HHV-6 is a story of its own. No matter what material I test I get back 400 copies. IgM always negative, IgG stable 1:160. In Germany they treat from 1000 copies.

4. HRV is useless for me. I can crash within seconds. Only HR gives me a live input on my stress levels.

thank you

 

[Lisa108]

Good point! I had both co-occurring and treating both very much helped.

Hi @Learner1, what kind of treatment has helped you?

 

[Learner1]

Hi @Learner1, what kind of treatment has helped you?

1. Hormones - hydrocortisone, thyroid, melatonin, vitamin D, sex hormones including DHEA and testosterone
2. Valcyte
3. Antibiotics IVs (azithromycin, rifampin, doxycycline)
4. LDN
5. IVIG
6. Rituximab
7. Probiotics
8. Nutrient dense diet
9. B vitamins
10. Antioxidants
11. Amino acids
12. Minerals
13. Huperzine A (instead of Mestinon)
14. Beta blockers
15. Clonidine
16. Melatonin
17. Mast cell meds and supps - quercetin, diphenhydramine, ketotifen, cromolyn sodium, and (only with IVIG) lorazepam
18. Kuvan
19. Botanicals - curcumin, boswellia, mushrooms

Not all at the same time, but in phases! I know this will seem daunting, but this was over 6 years. The attached diagram, which I found online helps explain the phases (I've never met Dr. Holtorf.)

 

[dave11]

Other conditions marked by PEM type crashes are hypoglycemia and adrenal fatigue. If a person has both ME and these other problems, it would be confusing to distinguish the source of symptoms.

Any stress generates the secretion by the adrenals of cortisol. The stress can by physical, mental, emotional, viral, bacterial, or an allergen. This process can weaken the adrenals when they have to work too hard.

Low cortisol/adrenal fatigue may include any of the following symptoms: chronic fatigue, weakness, apnea, insomnia, autoimmune issues, clouded thinking, muscle wasting, blurred vision, salt wasting, dizziness, shakiness, low blood pressure, impaired thyroid function, shortness of breath, allergies, and low blood glucose (hypoglycemia).

Fasting hypoglycemia can result from low cortisol, poor diet, skipping breakfast, some supplements and drugs, and several other reasons.
The blood glucose level is at its lowest from about 11:00PM to 5:00 AM, and again low in the middle of the afternoon.

Low blood glucose symptoms may include weakness, shakiness, dizziness, fast heartbeat, tachycardia, apnea, bradycardia, hypothermia, inability to concentrate, confusion, shortness of breath, lethargy, blurred vision, acute pulmonary edema, seizures, tremors, insomnia, a reduction in the production of serotonin and dopamine, and adrenergic and neuroglycopenic signs.

A person with a "normal" cortisol test reading may suffer from adrenal fatigue. Similarly, a person with a "normal" blood glucose test result may have hypoglycemic symptoms.

Onset of adrenal fatigue and hypoglycemic symptoms can be sudden like a switch has flipped. After adrenal /hypoglycemia illness has manifested, PEM type crashes can readily occur, frequently, and at a mild stress level. Crashes can be severe, and if not treated, long lasting.

A good read from Amazon on adrenal fatigue is: "Adrenal Fatigue, The 21st Century Stress Syndrome" by James Wilson, N.D., D.C., PhD.

This post from YippeeKi YOW is right on target:

The late-nite-waking effect screams cortisol and adrenal issues, specifically adrenal exhaustion. MECFS shares over 39 symptoms with Addison's Disease, which is entirely, or almost entirely, adrenal-insufficiency based. In fact, in reading thru the symptoms of Addison's, I found it hard to believe I wasn't on a MECFS site.

Maybe, at the risk of being accused of reductionism, you might want to resort to the Univ of Google and check out adrenal insufficiency, Addison's, and MECFS. There way be a simpler way to get from A to Z.

I know that by doing adrenal-based dietary and supplement adjustments, I've greatly reduced several of my symptoms, and improved several others. This doesn't preclude episodes of insomnia, PEMS, POTS, muscle and joint pains, spastic muscles and jerky marionette-type movements, severe global dizziness, nausea, head pressure and pain, ditto chest, and all the other many little treats this illness produces, but the incidence is greatly decreased, and usually requires a solid, negative trigger instead of just showing up whenever, willy-nilly. It's a vast improvement

 

[Martin aka paused||M.E.]

Other conditions marked by PEM type crashes are hypoglycemia and adrenal fatigue. If a person has both ME and these other problems, it would be confusing to distinguish the source of symptoms.

Any stress generates the secretion by the adrenals of cortisol. The stress can by physical, mental, emotional, viral, bacterial, or an allergen. This process can weaken the adrenals when they have to work too hard.

Low cortisol/adrenal fatigue may include any of the following symptoms: chronic fatigue, weakness, apnea, insomnia, autoimmune issues, clouded thinking, muscle wasting, blurred vision, salt wasting, dizziness, shakiness, low blood pressure, impaired thyroid function, shortness of breath, allergies, and low blood glucose (hypoglycemia).

Fasting hypoglycemia can result from low cortisol, poor diet, skipping breakfast, some supplements and drugs, and several other reasons.
The blood glucose level is at its lowest from about 11:00PM to 5:00 AM, and again low in the middle of the afternoon.

Low blood glucose symptoms may include weakness, shakiness, dizziness, fast heartbeat, tachycardia, apnea, bradycardia, hypothermia, inability to concentrate, confusion, shortness of breath, lethargy, blurred vision, acute pulmonary edema, seizures, tremors, insomnia, a reduction in the production of serotonin and dopamine, and adrenergic and neuroglycopenic signs.

A person with a "normal" cortisol test reading may suffer from adrenal fatigue. Similarly, a person with a "normal" blood glucose test result may have hypoglycemic symptoms.

Onset of adrenal fatigue and hypoglycemic symptoms can be sudden like a switch has flipped. After adrenal /hypoglycemia illness has manifested, PEM type crashes can readily occur, frequently, and at a mild stress level. Crashes can be severe, and if not treated, long lasting.

A good read from Amazon on adrenal fatigue is: "Adrenal Fatigue, The 21st Century Stress Syndrome" by James Wilson, N.D., D.C., PhD.

This post from YippeeKi YOW is right on target:

Good read. But why then do Abilify and benzos help. Why do I crash from looking at the phone. Flu-like feeling...? Glucose levels where always in check. Measuring adrenaline is tricky. Had it measured via 2. Morning urine, was normal

 

[dave11]

But why then do Abilify and benzos help.

From what I have read, low dose Abilify increases dopamine, which reportedly benefits people with ME/CFS and neuroinflammation.
https://www.healthrising.org/blog/2021/03/09/abilify-chronic-fatigue-syndrome-promise/

Benzos also increase dopamine levels.
https://boardwalkrecoverycenter.com/why-are-benzodiazepines-so-addictive/

As to the remainder of your question, I don't know if the information on adrenal fatigue/hypoglycemia is relevant to your situation. My post on AF and hypoglycemia was in response to the thread title "Another Disease with PEM?"

I do not have ME, but I have suffered from CFS with PEM type crashes due to AF and hypoglycemia. This includes three years in bed about 95 percent of each day. Whether you may have these other conditions, or not, I do not know. I wish I could be more helpful.

 

[Learner1]

. If a person has both ME and these other problems, it would be confusing to distinguish the source of symptoms.

Any stress generates the secretion by the adrenals of cortisol. The stress can by physical, mental, emotional, viral, bacterial, or an allergen. This process can weaken the adrenals when they have to work too hard.

Low cortisol/adrenal fatigue may include any of the following symptoms: chronic fatigue, weakness, apnea, insomnia, autoimmune issues, clouded thinking, muscle wasting, blurred vision, salt wasting, dizziness, shakiness, low blood pressure, impaired thyroid function, shortness of breath, allergies, and low blood glucose (hypoglycemia)

Adrenal fatigue isn't really a thing. I read just about every book I could get my hands on when I first got sick on adrenal fatigue, and it was all very confusing. I couldn't figure out if I was stage 6 and nearly dead or stage 3 or what, but I never had the high cortisol that proceeded the low cortisol And I was doing everything that the experts like Wilson recommend without any improvement.

Most endocrinologists only recognize Addison's disease and Cushing's disease and if you don't have either, they won't help.

I had low morning cortisol but not devastatingly low, my cortisol was lower at 9:00 a.m. than it was at 6:00 to 7:00 a.m., which only became evident when doing a 24-hour saliva or urine cortisol test. I also did an ACTH stimulation test, which dictates a certain amount of rise in cortisol production with stimulated by ACTH, and mine didn't rise the stated amount, though it did rise a bit. So an endocrinologist Saw it and said I was normal. I checked with other patients online, and with my ME/CFS specialist, and all said that it was abnormal, and that I had adrenal insufficiency which is on the road to Addison's, but not yet Addison's. I also had low aldosterone which is also produced by the adrenal glands.

Both my functional medicine doctor and my ME/CS best specialist thought I should be on replacement hydrocortisone, so I started at 30 mg a day, then, as We treated other problems, like infections, and I improved, I was able to reduce it to 25, then 10, then 5 and 2.5, then 1mg a day over a period of about 2 years. I also take the Vital Nutrients Adrenal Support product and keep vitamin C at an adequate level.

Again, no amount of following "adrenal fatigue" advice was helpful. There was a time when I was drinking five cups of espresso a day to stay awake, And then it got to the point where the caffeine did nothing, and I could drink the coffee and 5 minutes later be sound asleep. I knew I was really sick then. I had also tried not drinking coffee, and it didn't care my adrenal fatigue, I was just worse.

A person with a "normal" cortisol test reading may suffer from adrenal fatigue.

It is worthwhile to do a 24-hour saliva or urine cortisol test, ACTH, an ACTH stim test (which is usually fine at a large clinic with a lab or a hospital).

A good read from Amazon on adrenal fatigue is: "Adrenal Fatigue, The 21st Century Stress Syndrome" by James Wilson, N.D., D.C., PhD.

Though there's some decent advice in there, The main issues for ME/CFS patients, like infections, autoimmunity, nutrient deficiencies, hormone deficiencies, CCI / Chiari, POTS, MCAS, EDS, microbiome disruption, etc. are likely contributing to the load on the adrenals, and treating them will likely improve things.

I do not have ME, but I have suffered from CFS with PEM type crashes due to AF and hypoglycemia. This includes three years in bed about 95 percent of each day.

You have stated that ME/CFS can be confused with adrenal fatigue, Or at least, that patients would be confused by this. I don't find it very confusing. I have ME/CFS and several of the things that put me into a subset of patients that put a load on my adrenals. I found with adrenal insufficiency, I needed to supplement hydrocortisone, which helped my day-to-day function, but did not make my ME/CFS go away. I also learned that if my body did not have enough cortisol, either that I have produced or through hydrocortisone supplementation, when my body had an extra stress, I went into adrenal crisis, which can be life-threatening. It manifested as fatigue initially, and then within 36 hours, I had excruciating pain at the top of my kidneys where my adrenal glands are, and taking either dexamethasone, a steroid, or a high dose of hydrocortisone, immediately caused the pain to go away, only for it to return when the steroid wore off And that I had to be on a high dose for about 3 days and then taper down to my usual hydrocortisone dose over about 2 weeks.

Obviously, working with a doctor who knows about all of the above would be useful, particularly as prescriptions are needed for the steroids. And, warning any doctor before trying a new treatment about your adrenal insufficiency is wise. I got caught because a doctor didn't take it seriously and cavalierly gave me an IV medication for another condition that triggered the adrenal crisis, without explaining the potential side effects. I believe they also make alert bracelets if this is an ongoing danger.

 

[Martin aka paused||M.E.]

I crawled the literature again because of my normal ATP levels and found out that different studies come to different results. And then some finds are transferrable to me. I’ve attached some pics of an article.
I got a proton lack, very low pyruvate in urine and they calculated my ATP output bc of the lack to be insufficient. Always found that not very reliable but who knows. Another explanation is compensation of ATP metabolism in different complexes of the mitochondria.

Here is the article: https://www.meresearch.org.uk/wiped-out/

 

[Martin aka paused||M.E.]

The lab recommended these infusions over 6-8 months three times per week:

 

[dave11]

The following links concerning ME/CFS discuss several of the items mentioned in this thread, including possible adrenal issues:

https://academic.oup.com/jcem/article/86/8/3545/2848467?login=true

https://www.degruyter.com/document/doi/10.1515/reveh-2015-0026/html

 

[hapl808]

This is the problem. I read all these things and try them looking for answers, but in the end I'm convinced that until we know the actual mechanisms of the diseases, can verify them empirically, and can treat them - then it's all just guesswork.

Even ME/CFS - what is it? Are we using the Fukuda criteria? Just PEM? Adrenal fatigue, chronic lyme, Long Covid, mold or CIRS, Markov's kidney hypothesis, etc. These are all just symptom baskets that we're giving names and subscribing to theory clusters. It helps to have that so we can discuss it more intelligently, but until we know the actual causes and effective cures - then we're just guessing. It bothers me when I see people (often on social media) claim that a new doctor finally diagnosed them correctly - with mold or adrenal fatigue or lyme or whatever. My immediate thought is - diagnosed how? With Shoemaker's visual contrast, with Igenex, etc. And while I think western medicine's general approach is shit (you're fine - just push through), the naturopathic bullshit approach lacks rigor and validation. I think Hip maybe said it in another thread - easier to blame everything on candida than to actually go to medical school.

With ME/CFS - we're still looking for a unified theory. Mine was triggered by an illness while traveling, but I probably already had signs of very mild CFS before that. What does it all mean? Well, that's why I still read papers and watch newly converted doctors (ie. doctors seeing new dollar signs) opine about Long Covid and how it's so, so different than anything else they've seen! Oh my god, we've never seen a virus that leaves people with some of these symptoms (except for every one of us who has described the exact same symptoms after getting sick and was ignored). I'm glad they'll get some extra cash but I expect very little will filter down to us.

Rant over.

 

[Martin aka paused||M.E.]

@Learner1 my chl. Trachomatis is borderline high (just one titer under positive). Don’t have symptoms … should I ask for doxy?

 

[Learner1]

@Learner1 my chl. Trachomatis is borderline high (just one titer under positive). Don’t have symptoms … should I ask for doxy?

I'm not a doctor, but I did look it up, and it looks like azithromycin and doxycycline are the drugs for chlamydia trachomatis. I'm not sure if rifampin along with both of those would be the best treatment, as in the chlamydia pneumonia I had, but that would be worth further investigating. The idea behind using multiple antibiotics is it gets to the different life cycle phases of the chlamydia, in contrast to only using one drug, where it can evade eradication by converting to another life form and carrying on. I think this is what happened when I was only given azithromycin, and only given azithromycin and rifampin. It took all three drugs to eradicate the chlamydia pneumonia.. I don't have time today to research it, but you might look for any studies on rifampin and then go from there.

As for symptoms, if you're immune system isn't working properly You may not be having symptoms, but it could be doing damage. Once you do a little more digging, I would be worth discussing with your doctor.

Best wishes