Desperately need feedback

Perhaps when a member asks for input, everybody can provide input -- right or wrong -- and the person asking for input can take it or leave it.

The Alternative/Co-existing or Missed diagnoses" forums are here to allow members to discuss other diagnoses they may have. We are a forum for ME/CFS but this section allows broader discussion beyond the ME/CFS diagnosis. Opinions are offered here. Take from them what you will.
Hi everyone, it has been a long time since I posted. I wanted to post an update and also get more advice. I have a lot more information to go off of now but the picture is incomplete.

I originally posted in August 2016. It's now almost one year later. Winter was hard, but I made it through without a flare, which is a huge deal for me. However, the winter time significantly increased my risk of a flare. I caught a cold and the flu and each time I almost went into flare territory.

Before I say anything further, I have two lingering problems:
1) Neutropenia -- my white blood cell counts are continually below normal, although I don't seem more susceptible to infection than usual right now. i.e. if I catch a cold I can still fend it off. However, during winter time, I caught a sore throat and it took my immune system almost 2 weeks to kick in and the glands in my neck to swell. Until then, I was really run down.
2) Chronic fatigue, brain fog, weakness (better than before but still a problem), chemical sensitivities, unexplained body pains.

The following things have helped me immensely, that I discovered along the way:
1) Taking Low Dose Naltrexone. I'm fixed at 3mg each night. This has given me my life back: a lot more daytime energy. It has brought my neutrophils up to near-normal but there is still a drag that can't be explained. When I first started LDN, within the first two weeks I caught a severe cold, which in hindsight might have been my immune system coming back online and scavenging stuff.
2) Taking up to 50,000 IU vitamin D weekly.
3) Removing all traces of dairy from my diet. I mean all of them. At the time of my last post I was drinking milk kefir to provide probiotic. I mistakenly believed that the lack of lactose made it OK, when I actually had developed an allergy to casein!
4) Taking anti-inflammatory herbs.
5) Getting iron IVs to rectify my anemia. I still need them periodically because my bowels are not absorbing iron.

I went the hormone investigation route and here are the results I have so far:
December 2016:
AM Cortisol 407 (125-536)
ACTH 14.7 (1.6-13.9)
Prolactin 20 (3.8-20.6)
Testosterone 25.9 (8.4-28.8)
IGF-1 176 (80-243)
TSH 1.94 (0.32-5.04)
T4 Free 13.3 (10.6-19.7)
FSH 1.4 (<9.5)
LH 3.0 (1.1-8.8)

June 2017:
AM Cortisol 435 (125-536)
ACTH 13.6 (1.6-13.9)
Testosterone 29.9 (8.4-28.8)
DHEA Sulphate 6.8 (<15.0)
25-Hydroxyvitamin-D 127 (75-150)

CRP and ESR are normal. Kidneys, liver, blood all normal, except neutrophils which are low.

I never got the ACTH stim test but I think I should because stressful events exhaust me. Someone also mentioned on a Facebook group that AM cortisol is not a useful read for how much cortisol my body is actually using. I may release a lot in the AM but there may be none by afternoon, or my body is poorly utilizing it. How would I track that?

I also don't get why my testosterone is so high. I'm not really that athletic, and you'll note that the levels have gone up from the first test.

My endocrinologist says that the high ACTH at the start was due to my adrenals coming back online following prednisone use. I am seeing my endocrinologist again this coming week. Any suggestions for test requests?

As I said in a previous post, I took a triple antibiotic combo last summer but I have not had a follow up stool test since then from the lab in the U.S. I instead did a standard stool lab with public health. Just finished my 3rd lab in 6 months and it says all clear. BUT they never detected blasto in the first place... it was the U.S. lab that did. So it's possible I may still be infected.

I have been reading Stephen Buhner's books on herbal protocols for Lyme disease and I sometimes wonder if I have some kind of stealth pathogen in my body, which would explain the myriad of health conditions and IBD. I just don't buy auto-immune. Nobody in my family has IBD, not even my extended family. I am still working out the infectious angle.

For now I need to figure out what's behind this fatigue. My bowels are more or less normal now. I have tons of food sensitivities and probably still have leaky gut, but I have 1 formed bowel movement per day. I just have to avoid wheat, gluten, dairy and soy like the plague. I recently ate gluten by accident and I stopped fully absorbing food for 1 week. My bowels still aren't right but they're recovering. My life on the whole is more normal than it's been in years but I can feel there is still major immune dysfunction. I feel that if I stop the LDN I may come crashing down.

EDIT: I thought I would also add, I've returned to work, but only part time. I work maybe 10 hours a week. Anymore than that and I start to get unwell. Fatigue is a constant problem.
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Interesting paper... I'm not sure how to apply its findings to my life.

I tired nicotine, as a patch and through smoking tobacco... both methods made my bowels worse.

In some people nicotine suppresses the immune system (probably through neuroglia deactivation or suppression), and in others it causes immune activation.


Senior Member
Interesting paper... I'm not sure how to apply its findings to my life.
There are some suggested therapies in the following paper based on vagus nerve stimulation.

Anti‐inflammatory properties of the vagus nerve: potential therapeutic implications of vagus nerve stimulation

Brain and viscera interplay within the autonomic nervous system where the vagus nerve (VN), containing approximately 80% afferent and 20% efferent fibres, plays multiple key roles in the homeostatic regulations of visceral functions. Recent data have suggested the anti‐inflammatory role of the VN. This vagal function is mediated through several pathways, some of them still debated. The first one is the anti‐inflammatory hypothalamic–pituitary–adrenal axis which is stimulated by vagal afferent fibres and leads to the release of cortisol by the adrenal glands. The second one, called the cholinergic anti‐inflammatory pathway, is mediated through vagal efferent fibres that synapse onto enteric neurons which release acetylcholine (ACh) at the synaptic junction with macrophages. ACh binds to α‐7‐nicotinic ACh receptors of those macrophages to inhibit the release of tumour necrosis (TNF)α, a pro‐inflammatory cytokine. The last pathway is the splenic sympathetic anti‐inflammatory pathway, where the VN stimulates the splenic sympathetic nerve. Norepinephrine (noradrenaline) released at the distal end of the splenic nerve links to the β2 adrenergic receptor of splenic lymphocytes that release ACh. Finally, ACh inhibits the release of TNFα by spleen macrophages through α‐7‐nicotinic ACh receptors. Understanding of these pathways is interesting from a therapeutic point of view, since they could be targeted in various ways to stimulate anti‐inflammatory regulation in TNFα‐related diseases such as inflammatory bowel disease and rheumatoid arthritis. Among others, VN stimulation, either as an invasive or non‐invasive procedure, is becoming increasingly frequent and several clinical trials are ongoing to evaluate the potential effectiveness of this therapy to alleviate chronic inflammation.
Perhaps more practically, Joseph Cohen has some tips on how to stimulate the vagus nerve.