Many PwME complain of episodes of feeling as if they are running a fever although body temperature read by a thermometer is normal. I have these episodes. Often they are accompanied by chills exactly like one would experience with a high-grade fever. Other times I feel as if my body is hot, as if burning up with fever. Yet people who touch me say that I feel normal. Sometimes I will flush.
Both Dr. Susan Levine and Dr. Irma Rey told me they believe it is the virus reactivating (at least in my case). I don't know which virus, as I have elevated titers for non-active EBV, HHV6, and Parvovirus.
Now here is research from Dr Jarred Younger that measured the temperature of the brains of subjects with ME. During neuroinflmmation the heat cannot be taken away fast enough fro the brain. Could this explain why we often feel as if we are burning up or running a fever? Just my musings... what are your thoughts?
BTW, Younger et al say their 2019 findings indicate that ME/CFS involves neuroinflammation. Haven't we known that for a long time?
Brains are naturally hotter than the rest of our bodies.
Temperature in the brain rises when there is inflammation present, just like body temperature does during an infection.
Blood circulation acts to ‘cool’ the brain, by taking away ‘hot’ blood and replacing it with cooler, to tryand match the core body temperature.
During neuroinflammation, metabolic reactions are happening so quickly that more heat is being produced, meaning it is less easily taken away by the circulation, as it can’t keep up with the heat being produced.
Temperature in the brain rises when inflammation is present.
Build-up of heat in the brain can start to cause cognitive problems, balance problems and mood problems, which could explain some of the symptoms of ME/CFS.
Brain temperature is very sensitively controlled and so even a 1-degree difference would be enough to create symptoms.
BTW I had this MRS done that is described in Younger's study. Mine was part of a clinical trial with Weil Cornell. The researcher NEVER interpreted my results and I have a CD with the images that none of my neurologists can make heads or tails of... thanks for that... much appreciated... very helpful... FML. DOES ANYONE KNOW WHERE I CAN HAVE THEM READ?
Lactic Acid, aka Lactate, is found at elevated levels in PwME.
You usually don’t detect this [lactate] in the brain at all – and when you do it usually means the chemical reactions in the brain are happening so fast that the blood supply cannot keep up with the demand for oxygen. When this happens, cells switch to an alternative, less efficient, way of producing energy. This alternative pathway produces lactate as a by-product.
This is similar to when athletes run too fast and burn through the oxygen supply in their muscles. They have to convert to a different means of supplying muscles with energy, which leads to a build-up of lactic acid and causes muscle fatigue and pain. The only reason for lactate to be building up in the brain is if there’s neuroinflammation or ifthere’s a problem with the blood vessels, causing a shortage in supply of oxygen, which has been suggested before in ME/CFS (Biswal et al., 2011; Yoshiuchi et al., 2006).
Typically labeled a “waste” product produced by muscles because lactate rises to high levels in the blood during extreme exercise, athletic trainers and competitive athletes think of lactate as the cause of muscle fatigue, reduced performance and pain.
Starting in the 1970s, however, Brooks, his students, postdoctoral fellows and staff were the first to show that lactate wasn’t waste. It was a fuel produced by muscle cells all the time and often the preferred source of energy in the body: The brain and heart both run more efficiently and more strongly when fueled by lactate than by glucose, another fuel that circulates through the blood.
“It’s a historic mistake,” Brooks said. “It was thought that lactate is made in muscles when there is not enough oxygen. It has been thought to be a fatigue agent, a metabolic waste product, a metabolic poison. But the classic mistake was to note that when a cell was under stress, there was a lot of lactate, then blame it on lactate. The proper interpretation is that lactate production is a strain response, it’s there to compensate for metabolic stress. It is the way cells push back on deficits in metabolism.”
I've been following the work of Doris Loh. She just released her latest research this morning about Vitamin C / ascorbic acid for mitochondrial functioning, oxidative stress, redox balancing, etc. You can read the article here https://www.evolutamente.it/vitamin...vOfHjIfP5Q2vVtrxvdWxsYqFdkR2G83AFMI3PqfeNdLSM
Doris suggested that I use ascorbic acid 1/8 tsp EVERY HOUR. Then try to up to 1 g or 1/4 tsp every hour. Add it to 8oz water and drink it up. Fresh preparation is best.
Since I have trouble remembering to do this every hour, she further suggested that I measure the whole day's worth and keep taking until I finish it by end of day. Even if it means I have to take the final dose as a large dose, which is not ideal, but what I need to live with.
This is based on waking hours. So if I am awake for 16 hours it would be 16 x 1/8 tsp into a jug of water that I sip throughout the day. DO NOT USE plastic water bottle for this. I use a stainless steel 32 oz thermos.
I have been using AA and I have noticed improvements along the way. So I am excited to try this increased dosage. I was unable to use Vitamin C because it makes me break out in acne horribly. But the AA does not bother me. A good brand is NOW Foods vitamin C crystals ascorbic acid.
If you are not familiar with my story, I am being treated by Dr. Irma Rey at Nova Southeastern (in Dr. Klimas' group). Dr. Rey believes that ME/CFS is an environmental illness with MANY factors coming together to create the condition. I have tested off the charts for 2 molds, almost all heavy metals, and other chemical toxins, plus high titers for EBV, HHV6, Parvovirus, and a bunch of other stuff consistent with ME CFS (like my 2-day CPET results). I was ill but when I moved into my current home I became extremely ill and was dying. So I've wanted to get the f*ck outta here. I made an offer on a house in Indianapolis where I lived before moving here to the pristine mountains. But I only want to move there if it will enable me to fully recover.
I found a company in Indianapolis called American Mold Experts that does mold and mycotoxin testing and remediation. They also have a sister company that sell natural enzyme remediation products and equipment. While that is normally a red flag, as of this writing I believe the company to be legitimate.
And here is why:
-- I spoke with one of the owners, Bill Niccoll, for easily 2-hours about my situation. He was extremely knowledgeable in many areas, way too much for me to detail right now, but suffice it to say he understands the severity of bio-toxin illnesses and what home environment creates mycotoxins and endotoxins and VOCs, as well as the proper steps necessary to test for and remove mycotoxins, as well as various building codes. Bill himself has overcome a bio-toxin illness working with a naturopath in Indy. And Bill has helped many very ill people be able to stay in their homes after remediation, where they could then heal.
-- What I wrote above is not only based on what Bill said to me, but also based on the reviews that I could find online on Google, Glassdoor, Yelp, Facebook, Home Advisor, and the Better Business Bureau.
-- Bill quoted me a price for mold testing and mycotoxin testing. When I made the appointment the admin Karen said the price was $200 higher. It was obviously an honest mistake on his part but Bill honored the price that he quoted me. I was extremely appreciative. That shows integrity. I doubt he is making any money on the inspection because I see how much the tests are on the Realtime Labs website.
-- Even though they did not have any availability for several weeks, they called an inspector in early to do my inspection last week owing to my project being on a super tight timeline. The inspector was there at 7am.
-- Their price for the comprehensive inspection is below what other mold inspectors are charging. They are running mold and mycotoxin panels with Realtime Labs, air samples, dust samples, moisture and humidity tests, and I believe thermal imaging.
They travel all over the country to do remediation work.
Bill suggested that I try a product for myself from their sister company US Enzyme. He says it will clear my brain fog. It only cost $40 for the cool-mist humidifier and $85 for the Renew-Air 1 gallon concentrate air cleaner (mix 16 oz of product with 112 oz water). I bought an $800 air filter from another company that was highly rated and doesn't seem to provide any benefit. So I will be very delighted if the Renew-Air and humidifier helps me. They also sell the products and equipment for you to do your own remediation, if you feel that you are up to this daunting task.
I will update this post when I get the test results back. This is being conducted on a house that I am under contract on. After a good discussion here on Phoenix Rising forum, I've decided if the test shows there are mold colonies in the house then I am going to not move forward on the house rather than ask the seller to put funds in escrow for remediation. I don't imagine being able to handle the stress of going through that on top of having to address the problems in my home -- I ended up in the ER already.
Lisa Petrison, PhD has useful information on her website about environmental mold testing https://paradigmchange.me/testing/
Dr. Shoemaker's website has a short mold remediation plan written by a mold inspector https://www.survivingmold.com/docs/CondensedRemediationPlan_v2-1.pdf
Dr. Lisa Levine Nagy has a mold getaway plan that includes some good ideas and resources that you can take away even if you don't follow the entire plan https://lisanagy.com/wp-content/uploads/2019/02/Getaway-Plan-for-Mold-victims-w.pdf
Dr. Neil Nathan's book TOXIC is required reading. It details how to get better, and even how to drop the #@^&^$& fat that we gain! https://amzn.to/2H1HXWJ
UPDATE: While I do not have the mold report in hand yet, Bill Niccoll of American Mold Experts did discuss their findings with me over the phone. The house is highly infested with several species of dangerous molds from bottom to top and there is rotting wood in the house as a result of water damage and too much moisture (humidity levels 80%).
To the naked eye the house looks clean and beautiful. My realtor said it was one of the cleanest homes he had ever been in. That goes to show how important a REAL mold inspection is (not the kind done by your general home inspector). And we haven't even gotten the mycotoxin report back yet.
What most people don't understand is that mold and bacteria will be present once humidity is ~65% although you most likely will not see the mold, as in the case of the house I had inspected. What is even worse is that bacteria release endotoxins and mold releases mycotoxins -- these are poisons that lead to chronic disease.
I would be very sick in the house, but anyone would get sick overtime and probably never know it was from their house.
UPDATE 2: Mold reports can be hard to understand. What is an safe level of mold? That's somewhat subjective and John C. Banta writes in the book TOXIC by Dr. Neil Nathan that "it is necessary for a home to work for the most sensitive person in the household." American Mold Experts who inspected the home that I wanted to buy had this to say about safe mold levels: In regard to safe levels, any species of mold that is over 500 spore count or a total of 1,000 spore count in an area we deem as unsafe and we recommend remediation. For example, in the dining room the total spore count is 9,000 and it should be no more than 1,000. The Basidiospores count is 8,400 and it should be no more than 500." I sent the report to John C. Banta for a second opinion and he replied, "I agree that the place you wanted to buy is going to be a challenge and may not be worth it."
BTW, John C. Banta recommends hiring an IICRC-certified firm for remediation. He has a website full of information and resources https://www.johncbanta.com/current-project. However, I would NOT even consider a firm who does not thoroughly understand MYCOTOXIN remediation. And I want it in writing on their website as that is a legal document. You can "locate a certified pro" on the association website https://www.iicrc.org/page/IICRCGlobalLocator I also wonder if Realtime Labs offers referrals. I recall Bill Niccols at American Mold Experts said they were one of two firms certified or something like that in IN with Realtime Labs... sorry but I don't recall his exact words.
I've attached a snapshot from the mold report.
"Unrest" documentary filmmaker and activist, Jen Brea writes, "By any definition, I no longer meet the criteria for myalgic encephalomyelitis. My physical and cognitive post-exertional malaise (PEM) are both gone. I have not crashed since I left the hospital. My POTS is gone. My peripheral neurological symptoms, sound sensitivity, sensory processing challenges, difficulty regulating my body temperature, intracranial pressure, brain inflammation and muscle fatigability are all gone. I am off Valcyte, Famvir, Mestinon, and all other ME or POTS drugs...
I was an acute, post-viral onset patient. I have never had any symptoms that I would have interpreted as structural, rather than systemic. I never had any discernible problems with my neck. As it turned out, the mechanism was structural. Its impacts were systemic...
And now, Jeff Wood and I are the first two patients (as far as we know) to meet the International Consensus Criteria for ME and to have our ME resolve due to this fusion surgery...
I found improvement of essentially all symptoms with rest/pacing (not included in the table). Specific symptoms further improved with mold avoidance, Valcyte, Mestinon and Fludrocortisone. Even with these treatments, I still met the criteria for ME but shifted from the “severe” end of the spectrum to “moderate.” I found resolution of essentially all of these symptoms after my craniocervical fusion and tethered cord release surgeries, and no longer meet any criteria for ME or CFS...
Whatever the cause or central mechanism of your ME, there is a reasonable chance that when it is discovered, a treatment may already exist, waiting to be applied to a population it never imagined could need it..."
Read her incredible story here: https://medium.com/@jenbrea/health-...0OX7PuPEPqGNeawRmDQy0xGfSfmGCcIrUWlBuRiadxwUk
I immediately reached out to Jen's surgeon, Dr. Bolognese in NY. Irene from his office replied via email. She had me fill out a bunch of forms and told me to get PT with traction ordered and to keep a log before and after of how I responded. I replied with all of the forms and said that I had already done NRCT, a form of traction on the neck, and described my response. Irene also said to get an MRI of the lumbar and cervical spine. So then I got my neurologist to order the MRIs and I sent the disc to Irene for evaluation. She emailed me and asked for the forms that I'd already sent. So I re-sent those. Then Irene emailed me and asked for the reports for the MRIs. Then Vanesa emailed and said I needed an Xray of the lumbar spine and that the doctor wanted me to do home traction for a month, as follows:
Here is the protocol for Traction
Trial of Cervical Traction with PT (manual or with devices, for a total of 5-6 times) – the patient will keep a journal recording how the chief complaints are before the traction, during the traction, and in the 2-3 hours following the traction, keeping in mind that in some cases a transient rebound effect can occur after the removal of the traction – the trial should be aborted if severe pain occurs (mandible, occiput, neck)
1.-How long should the PT hold the traction?
2.- How much pressure should the PT apply?
TRACTION WEIGHT BETWEEN 10 AND 20 LBS
3.- How many times should traction be performed?
Make a JOURNAL of how your top three MAIN symptoms are:
* Immediately before cervical traction with PT
* During cervical traction with PT
* In first few hours after cervical traction with PT
Save the JOURNAL in a WORD file.
Keep it short and to the point.
EXCUSE ME BUT DOES ANYONE UNDERSTAND THESE DIRECTIONS? I surely did not.
And shortly after this I received an email that I did not meet their criteria and would not be granted an appointment. The practice seems very impersonal and disorganized to me. I've also read some reviews of the doctor that raise a red flag. I truly don't know where to go from here.
NAC is a precursor to glutathione production in the body. According to my research, most people with ME benefit from taking this supplement and many clinicians believe it is superior to taking glutathione. You can Google it or use Google Scholar and I've posted a few links below to articles that may be of interest. I take 600mg 3x a day, which is the recommended dose for PwME based on my research.
Anyway, I want to share that I found a very good sale on NAC. I have not done business with FreshHealthNutrition in the past so I cannot vouch for them. But its a great sale so I thought I'd give them a try. I spend a small fortune on supplements so wherever I can save is very helpful.
There is a flat rate shipping of 5.95 per order. So I ordered 2 bottles of NOW NAC 600 mg 250 capsule for about $25 + shipping. That's a good price as most website are selling one bottle for ~$18. I sure hope this product is not near expiry date or anything like that. There is a phone number to call customer service but I just threw the dice and ordered.
I'll post in the comments when I receive them and let you know about my experience. BTW NOW brand is a reputable manufacturer of supplements and generally is well-priced.
My sleep had been TERRIBLE (trouble falling asleep and trouble staying asleep) when I moved into this house. But this year I have been on a supplement protocol that includes a MELATONIN tablet at night and my sleep has been perfection. Just like that. And sleep effects sooooo many things that have to do with health and well being and healing. Therefore it is fundamental to healing.
Sleep is part of the SHINE protocol that people pay a lot of money to follow. The S in SHINE stands for Sleep. Sleep replenishes your body's energy and helps heal your muscles. Inadequate sleep will leave you exhausted and in pain. Because your sleep center isn't working in CFS/FMS, aggressive sleep support is necessary.
From WebMD on MEL and sleep https://www.webmd.com/vitamins/ai/ingredientmono-940/melatonin
Low circulating levels of MEL are linked to disease https://www.ncbi.nlm.nih.gov/pubmed...YABJTOW230YQ7H53pE1MJlWzR44kvfU9MG2D6zDnH6zPI
Also it is very VERY very important to have a room that is DARK. We need to get dark adapted again, which is our natural state of being at night. It is conducive to sleep and sleep quality. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2596746/
Most especially interfering with sleep is BLUE light from electronics -- the TV, laptop, iPhone, iPad, Alexa (all things that I have in my bedroom except a TV). Lesser thought of WI FI items might be door bells, security systems, smart meters, and cell towers. An acquaintance who is a telecom specialist told me how to figure out if there are many cell towers in your area: "A simple exercise that I use. How many FM Radio Stations can you recieve in your car while parked in you driveway. First count the number using scan mode. Those are the strong ones. Second step thru and find the weak ones. Repeat this at midnight when you'd normally be asleep. Did the number of strong go up? It is Likely. The number of FM easily relates to the number of cell towers you likely have too."
Some people that are sensitive, like we canaries, are disturbed by EMF the electoermagnetic waves that are especially powerful and disruptive from electronics https://www.safespaceprotection.com/emf-health-risks/what-is-emf/ So in addition to removing electronics from our bedrooms and turning off the WI FI at night, some people even use Faraday Canopies to shelter their beds and themselves from EMF (smart meters, neighbor WI FI, cell towers, etc). My telecom specialist says, "I only support the Swiss EMF fabric cuz they supplied attenuation charts." He also says you may need faraday fabric under your bed, say if you live in a condo or apartment with people beneath you, etc. As for me, I live in a remote area on a mountaintop so I am not using a Faraday canopy.
However I do use a SafeSleeve to protect my organs from the radiation from my laptop, because I spend a lot of time on my laptop and I rest it on my lap versus a desk https://www.safesleevecases.com. Based on my research the SafeSleev offered the most protection for the best price point.
Along that vein, Dr. Rey told me to wear cotton and natural fabrics as much as possible. That's because I have a toxic overload of various "stuff" manmade (petrochemicals) and natural (like mold). So I went and got a 100% natural and organic pillow. It's filled with Buckwheat. My pillow just arrived and I must say it is hard compared to my Ghost Pillow and gel pillow (those are made of chemicals!!!). But the website says to give it a try for 30-days as your body adjusts. So I will try it. My partner loves the pillow from the get go. https://www.pinetales.com/pages/why-a-buckwheat-pillow
Here is further info on creating a sleep sanctuary http://biotoxinjourney.com/sleep/#Make_a_Sleep_Sanctuary
UPDATE: I now use a millet pillow from Pinetales.com It's the same company that makes the buckwheat pillow above. My partner loved it so much that I never got it back. LOL. I think it would be too hard for my likes. But the millet pillow is fantastic. It is supportive but soft.
So, in my first blog entry I wrote extensively about the turnaround that I had. This past week-ish, I stopped taking all of my supplements and meds (I am on a few RX meds but a ton of supplements). It wasn't really intentional and what happened was that my pill boxes/organizers simply needed to be refilled and I procrastinated. And what resulted from d/c my supplements and meds is that I crashed. I feel sick to my stomach. I have PEM. My head is killing me. I am in pain. My ears are ringing. My face is on fire. Etc. You know the deal.
So this morning I filled three weeks worth of pill boxes. I feel improved even after taking just one dose. Let's see how many days it takes to "recover."
No doubt my regimen works for ME. How far can I go?
What is the cause of my illness?
I spoke with Dr. Rey yesterday. She is my ME/CFS specialist at Nova Southeastern University's Institute of Neuro Immune Medicine in FL. I asked her what is the connection between CIRS (chronic inflammatory response syndrome) and ME/CFS. And Dr. Rey said they are the same thing, which is precisely what I had thought. She said the environmental doctors really showed "us" the way. She also said ME/CFS is a hodge podge of illnesses and that many doctors keep looking at just one aspect of it, trying to find "the" cause. I am paraphrasing Dr. Rey and working from memory so keep that in mind.
The body eliminates toxins through the liver, kidneys, intestines, lungs, lymphatic system, and skin.
I do not sweat much, which is an important part of the body's detoxification process via the skin. I used to sweat. So what happened? I thought it was because I got thin and was in great condition. HA. I am no longer thin and in great condition and I still don't sweat. Shortly before I became ill with ME/CFS I had extensive body contouring plastic surgery. And my lymphatic system was disrupted by surgical scars across my entire body and the removal of lymph nodes in my armpits. The lymphatic system is another important detox pathway for the body.
I've had chronic constipation for many years. It was so bad that I now have a hernia, a prolapsed bladder, uterus, and rectum. And I have recurrent SIBO. This seemed to have come about when I began taking mega doses of iron owing to developing iron deficiency anemia. I later learned that iron is really bad for the gut microbiome. If I recollect correctly, it feeds the bad bacteria and/or wrecks diversity of bacteria. My recent results from Genova GI Effects test show I have no lactobacillus and I have pathogenic bacteria in my gut -- this was 2 weeks after a treatment of rifaximin + neomycin that should have wiped out the pathogens. Why are these pathogens resistant to treatment AND what doctor can help me?
I don't have chronic kidney disease but I have several markers for it. I would at least say there is some dysfunction there.
So there seem to be a number of detox pathways that are compromised in my body. Add to that, mold compromises detoxification. And I, like the majority of PwME test high for Ochratoxin and one other mold mycotoxin whose name I don't recall at the moment. Here's a detailed article on mold mycotoxins https://goop.com/wellness/health/how-to-identify-hidden-mold-toxicity-and-what-to-do-about-it/
When I moved into this house I became much more ill than I was previously. This is where I became mostly house bound and often bed bound. This is where I developed tinnitus and TMJ. This is where my ANS went haywire. I thought it was owing to severe emotional trauma and physical stress. And while I do not doubt that it was, I have to wonder if there is a toxin in the house to which I react. I had a sudden weight gain when I moved here and the body will often add fat for protection because it pulls toxins away from the organs and out of the blood and stuffs them into the fat where they cause less harm to the body. What was very eye opening to me was how much better I felt when I left the house for 3 weeks. It is important to note that my partner is not at all affected by the environment of the house.
So I have pathogenic bacteria, mycotoxins, and compromised detox pathways. Are these causation or simply effects of an underlying causation? How do the vagus nerve and ANS (autonomic nervous system) and CNS (central nervous system come into play? Do I have CCI as a root cause? One of my doctors said that compression in the neck could impinge those nerves that regulate all the processes of the body.
How many people are in the same boat as me?
So, here are some further thoughts from people on chronic inflammatory response syndrome and ME/CFS. I shared before that some people think these are the same condition. Recently in one of my FB mold groups a person asked this question, if they are the same disease. And here is another perspective that I wish to share. Some people believe that CIRS causes ME/CFS but they are not the same condition because people with CIRS do not have viruses like EBV, HHV6, Parvovirus, etc., commonly found in ME/CFS. Some people also believe that viruses also are a cause of ME/CFS; in other words, ME/CFS can be caused be either CIRS or a virus. These are theories that I am sharing. Nothing has been proven, yet.
What I believe is that both CIRS and viruses come together to create ME/CFS. The really great news is that CIRS responds well to treatment. From Shoemaker's website:
The opportunity for patients is that despite the multi-system, multi-symptom nature of CIRS, it is eminently treatable if managed by a clinician skilled in the diagnosis and treatment of CIRS. Hope is available. Cures are possible.
What this means to me is that everyone with ME/CFS will feel significant improvement by treating CIRS. This is my opinion but it TRUE for me. Why? Because it is what is working for me. Because I have spoken with other people whom it has worked for. Because Dr. Rey says her patients are responding to this treatment significantly more than when she treated with antivirals. Because the exercise physiologist at Nova who works across all of the MDs and PAs who are treating ME/CFS patients says Dr. Rey's patients are getting better than the other patients.
I also stress the importance of a spiritual component such as meditation and deep breathing and a positive attitude. More on that topic another day.
I have attached Shoemaker's diagram of the bio toxin pathway that leads to CIRS. This is in the public domain and thusly can be shared with attribution. What he refers to in the diagram as HLA is a gene that he believes is associated with the inability to clear the toxins from one's body.
Thank you to the people who sent private messages to me. However, I do not have the time to respond. I simply want to share some information here on the blog that may help people on their journey. My original post has tons of resources for people who want to learn more.
Understand that I wrote "I was dying. Now I am healed." That means that I am no longer dying. Do not read more into it than what is stated.
Yes, I have all the symptoms that are attributed to ME CFS. I believe I wrote about all the very expensive tests and results in my original post. I was in several clinical trials. That is how I was able to "get" the expensive tests. The big trial that I was in is still recruiting (NY and CA). Search clinical trials.gov to find a trial near you.
And if you have tests showing that you have high levels of toxins and you have worked to detox and heal but it has not worked then I would suggest that what you are/were doing is ineffective. How do you feel? What do your recent tests show? If your load is high then that is additional proof that what you are doing is not working. There are many resources listed in my original post where the authors and communities have gone into tremendous details and explanations about what works and has not worked -- it can be extreme for some but they are no longer dying, some have even fully recovered. This does not mean they are cured -- if they go into a sick environment they become ill almost immediately or at least quickly.
Dr. Shoemaker has a list of tests that he recommends on his website Surviving Mold. These are blood tests and thus there is a better chance of insurance covering them. Some insurers do cover the tests from Great Plains Labs that I had done and I believe that info is published on their website. Or you can call them or your insurance company to inquire.
Here are some interesting drawings from Dr. Lisa Nagy, which I believe she repurposed from Dr. William Rea. My ME CFS doctor, Irma Rey, drew something similar for me regarding the etiology of ME CFS. Nagy's drawing are on the web in the public domain so I am allowed to share them with citing her versus the drawing that Dr. Irma Rey shared with me in her office.
We are the canaries.