Understanding ME/CFS Today: A Clinical & Research Approach
Join the Institute for Neuro-Immune Medicine (INIM) at Nova Southeastern University to learn from the institute's clinicians and researchers as they discuss the clinical and research approach to ME/CFS.
Irina Rozenfeld, MSHS, MSN, ANP-BC, APRN - Nurse Practitioner
Maria Vera-Nunez, M.D., MSBI, DABOIM, IFMCP - Physician
Irma Rey, M.D. - Physician
Travis Craddock, Ph.D. - Director of the Clinical Systems Biology Group
May 15, 2020 12:00 PM
Free register here https://bit.ly/2SyW8rQ
I had my follow-up appointment with Dr. Rey at the Institue of Neuro-Immune Medicine at Nova Southeastern University. I think Dr. Rey is very knowledgeable and caring. They take Medicare Insurance, too! Not many ME/CFS Specialists do.
There were 5 med students with Dr. Rey (with my permission). It is good to see a new flock of doctors going into this field.
Dr. Rey believes ME/CFS is an environmental illness. We "canaries" absorb toxins throughout our lives and do not detox them. Here is the detox protocol that she gave to me (attached).
And you have to Aurora liposomal glutathione available on iHerb for $50 for 16oz. Start with 1 drop and work up to 1 tsp. This neutralizes free radicals, boosts the immune system and detoxifies the body.
You have to drink plenty of water and sweat and urinate and poop and breathe correctly as these are all detox pathways. Eat high fiber veggies to help pull out the toxins but do not eat processed foods or grains as they feed bad bacteria and mold.
You also need LDN, low dose naltrexone.
Before I saw Dr. Rey, I had put myself on a protocol that is more stringent than this. And I went from being mostly housebound / often bed bound to being able to do some things. I have gone from a 30 to a 50 on the Karnofsky Performance Scale. I believe that I am still exposed to mold and bacteria and things that I react to, so I further believe that I cannot get healthy until I get out of these conditions. I hope that when I do that I will regain my health.
I hope this is helpful. Additional resources that Dr. Rey gave to me are to watch Dr. Jeanette Hope's videos on mold and to read the book by Dr. William Rhea Optimum Environments for Optimum Health. I also recommend reading: Toxic by Dr. Neil Nathan, and Never Bet Against Occam by Dr. Lawrence Afrin, and the free books by Erik Johnson. I suggest everything on the website ParadigmChange, and following Doris Loh on Facebook and everything she has written on Mitochondria. I suggest reading everything on the BulletProof blog. Also, check out the Quantum Living in the Yucatan Facebook Group and the Facebook Group Hormones Matter.
I cite this study translational-medicine.biomedcentral.com/articles/10.1186/s12967-018-1392-z because all my many health problems began with an enterovirus. And this trial gave participants Dx w/MECFS antibiotic and probiotic treatments and diet to address enterococci and streptococci gut dysbiosis. I would like to try this protocol of 400mg erythromycin 2x/day alternating with the probiotic — one week on antibiotic alternating with one week on probiotic for 3-months and the carbohydrate (simple and complex) restricted diet plus IV and oral hydration. In this study, participants used 2 capsules daily of Pro4-50 D-lactate free multistrain probiotic (Spectrumceuticals Pty Ltd, Belrose, New South Wales, Australia). Each probiotic capsule contained Lactobacillus rhamnosus (2.5 × 1010 cfu), Bifidobacterium lactis (1.5 × 1010 cfu), Bifidobacterium breve (5 × 106 cfu), Bifidobacterium longum (5 × 106 cfu). Note that the study only trialed patients for 4 weeks. But an article in
Science Daily www.sciencedaily.com/releases/2018/08/180806095213.htm says 3-months are necessary. And an article on the Oley Foundation website outlines a similar therapy for acute and a long-term control of lactic acidosis oley.org/page/DLacticAcidosis. I have lactic acidosis. It is caused by dysbiosis. And it is comorbid with MECFS.
History: On July 2 2014, I was rushed to the ER and admitted overnight to the hospital following a trip to the Jersey Shore. The beach where I swam, Spring Lake, was closed owing to contamination with Enterococci www.nj.gov/dep/wreckpond/index.htm. I have always believed the enterovirus and subsequent microbial imbalance was causative of my MECFS. And all else: CIRS, IBS, SIBO, MCAS, HI, MCS, FMS, low T3, cataracts, weight gain, anxiety, brain fog, headache, etc. Now it seems I may have thyroid cancer. Well, there is link between dysbiosis and thyroid cancer, too, according to a study in PubMed www.ncbi.nlm.nih.gov/pubmed/30584647.
Add to this, I had a gastric bypass in 2003 and a revision in 2008. I developed severe motility issues owing to use of iron supplements and antidepressants. This facilitates bacteria staying in the small intestine where they can cause harm. Additionally, I have dyssynergic defecation (I believe caused by constipation) as shown by MRI-defacography. This can lead to leaky gut and fermentation of fecal matter. Also the blind loop / small bowel bypass is similar in effect to a small bowel resection that has been observed in D-Lactic acidosis (enterococci are d-lactic acid producing bacteria). In the ER I was found to have blood acidosis and subsequently in 2018 during my 2-day clinical trial at Weil Cornell, I was found to have high plasma lactic acid levels post exertion. That clinical trial also determined through 2-day CPET that my body uses glucose for energy, which results in d-lactic acid and l-lactic acid.
From the study linked above: “The D-lactate theory has been proposed as a possible mechanism for the neurological disturbances associated with gut dysbiosis in this population. D-Lactic acidosis is an acute metabolic acidosis with associated encephalopathy that is observed in patients with a history of small bowel resections. The shortened small bowel can lead to impaired absorption of carbohydrates, preferential growth of selected gut bacteria (e.g., increase in some species of Lactobacillus and Streptococcus) that promotes an acidic colonic environment and excess production of D-lactic acid. This abundance of D-lactic acid combined with decreased metabolic capacity can lead to excess absorption within the blood and brain believed to play a role in the neurological symptoms of D-lactic acidosis. Within ME/CFS, an overgrowth of Streptococcus and Enterococcus species (D-lactic acid producing bacteria) has been observed in culture-based microbial studies. This bacterial imbalance, combined with overlapping neurological symptoms and possible mechanisms have contributed to the proposal that subclinical concentrations of D-lactate may play a role in ME/CFS presentations.” Lactic acid in MECFS is being studied by the lead researcher, Dr. Shungu, of the trial in which I participated.
Selection of the correct probiotic is essential. According to Science Daily: “Short bowel syndrome results in a lot of undigested carbohydrates that are known to cause small intestinal bacterial overgrowth, or SIBO, and the high levels of D-lactic acid….
What we now know is that probiotic bacteria have the unique capacity to break down sugar and produce D-lactic acid. So if you inadvertently colonize your small bowel with probiotic bacteria, then you have set the stage for potentially developing lactic acidosis and brain fogginess.”
In the early stages of my illness, I would belch extensively and my stomach would bloat after eating. I went to the head of digestive disorders at IU Health and he said I was swallowing air. I knew that had SIBO but he did not believe me. He tried to treat me with a PPI, which I refused as it would have made the condition worse.
The article in Science Daily says to perform endoscopy that enables examination of fluid from the small intestines so the specific bacteria can be determined and the best antibiotics selected for treatment. However, I know the bacterial composition of my microbiota from a Genova GI Effects stool test. My commensal bacteria are borderline imbalanced: I have no Verrucomicrobia Phylum (Akkermansia muciniphila). I have low Fusobacteria Phylum and Firmicutes Phylum (Ruminococcus spp). I have high Bacteroidetes Phylum (Bacteroides vulgatus and Odoribacter spp). Calprotectin and Phospholipids fecal fats also are high. I have potentially pathogenic Candida glabrata (T. glabrata) and the test showed Nystatin or Fluconazole at a higher than normal dosage likely would be effective antifungals.
As for antibiotics, I’ve tried several antibiotic regimens throughout the years but have not tried Erythromycin. So it stands to reason it is one that will work, although there are other Abx therapies note on Oley (below).
I have in the past taken probiotics indiscriminately and eaten fermented foods containing probiotics on the advice of a clinical nutritionist. I have a history of very heavy antibiotic use from my teens through my 40s owing to chronic sinusitis and bronchitis, which alter the intestinal flora to favor D-lactate production, according to the Oley Foundation. I've done many courses of herbal antibiotics as well as rifaximin and neomycin. The only antibiotic protocols I have not tried are Erythromycin, clindamycin, tetracycline, metronidazole, vancomycin, and kanamycin. Note that Dr. Alison Siebecker, the Queen of SIBO, protocol calls for low dose Erythromycin lifelong after SIBO is eradicated so as to keep it eradicated.
What gives me hope it that treatment of acute episodes of D-lactic acidosis with carbohydrate restriction (both simple and complex), rehydration, and administration of antibiotics typically results in resolution of neurologic symptoms within hours to a few days, according to the Oley Foundation oley.org/page/DLacticAcidosis. I do not know if my condition is acute or chronic, none-the-less the treatment seems the same only the duration is longer per the sources above. “Acute episodes” could explain why I sometimes am totally out of it mentally and forget items cooking on the stove and other times I can ace a neuro-psych exam and complain it was too easy. Oley discusses how D-lactate encephalopathy is a rare neurological syndrome that can occur in individuals with short bowel syndrome (SBS) or following jejuno-ileal bypass surgery. The latter is a popular weight loss surgery that is no longer performed because it was later found to cause a slew of health problems — problems that are very similar to what I am experiencing now post gastric bypass weight loss surgery — trouble seeing at night, fatigue, anemia, kidney problems owing to malnutrition. An article in JAMA is titled Jejunoileal Bypass: A Legacy of Late Complications. Maybe we will find the gastric bypass has a slew of late complications, too, given it is a malabsorption procedure.
Oley goes on to say that a person may develop the neurological symptoms—which can be quite striking—several months to years after the initial diagnosis of a malabsorption disorder. Note that I have both a malabsorption disorder and a fat metabolism disorder (shown by the 2-day CPET). They say misdiagnosis of D-lactic acidosis is common, as the neurologic symptoms are sometimes attributed to other causes. But with proper diagnosis, D-lactic acidosis can be treated promptly and the symptoms will usually resolve within several hours to a few days.
Here is a treatment regimen detailed by a registered dietician on the Oley Foundation website oley.org/page/DLacticAcidosis. It includes IV hydration, antibiotics, diet, probiotics both for acute treatment and long-term treatment. It is old, and I think Erythromycin is a better choice of antibiotic since that is what the newer research is using, although I would not completely rule out the use of older Abx. Otherwise the protocol looks excellent.
Thus owing to the weight of evidence, I hope that the newer 3-month regimen discussed in Science Daily or the older treatment outlined on Oley will prove beneficial for me, maybe even life-changing. It is worth trying because folks that had the jejuno-ileal bypass surgery have died. And I do not want to die. Now to find a doc to Rx this.
The Administrative Law Judge rendered a fully favorable decision back in early May. But he did not approve my attorney's fee agreement. He stated, "You appointed more than one representative from a law firm, or other business; all your representatives did not sign a single fee agreement; and the representative(s) who did not sign the fee agreement, did not waive charging and collecting a fee."
What happened is I signed a fee agreement with the owner of the law firm. Later, they appointed an attorney to my case and I subsequently signed a fee agreement with her. This doesn't seem unusual to me. Law firms often have many attorneys, right?
So my entire claim for back pay is held up owing to the $6000 attorney fee. The back pay is a large sum of money.
So the law firm filed an objection. And it was recently denied! Now SSA made the law firm file a fee petition, along with proof of the work that they did on my case and hours that they spent, plus the two signed fee agreements -- the latter being signed by the law firm owner, my attorney, and me.
It is going to take SSA another few months to review this. Unbelievable. I should get interest on my money form them.
In the meantime, the IRS sends me a letter because I amended a previous years taxes. My account did all of the work and determined that I owed another $160 or so, which I paid. The IRS letter states that they reviewed my taxes and I owe them $1600+ with interest and penalties and they want it by mid October. They never even explained their calculation! My account called them and they would not speak to him without a power of attorney. I called and was placed on hold for an hour and no one ever came on the line.
What a bunch of criminals.
UPDATE: I called the IRS again and sat on hold for 90-minutes. Finally, I got an agent who could not have been less interested in talking to me. She would not give me any useful information and told me they'd mail a detailed transcript of the return. So I said to hell with this, gave my account a PoA and told him to handle it. He also waited on hold for 90-minutes and they told him that they did not accept some of my schedule C deductions. I said What ??? I've never heard of such a thing. My accountant said he's never heard of it, either. So, I am waiting on the transcript so I can give ti to the accountant and see if they made a mistake or if we can challenge them.
I recently went to the Cleveland Clinic functional medicine group and consulted with Dr. Alice Prescott. A patient told me that Dr. Prescott helped him a great deal. Dr. Prescott believes that I have MCAS mast cell activation syndrome, which I had suspected but since neither my hematologist or allergist locally are familiar with it I kind of forgot about it. So I was pleasantly surprised when Dr. Prescott brought it up. She ordered test but in the meantime told me to increase my antihistamine, start Quercetin Ascorbate 500-100 2x a day Designs for Health, and Saline wash 2x-3x a day and add 1 drop 5% lugols iodine to the saline wash. She said the AA ascorbic acid that I take is a mass cell stabilizer. She also said to read Dr. Afrin's book “Never Bet Against Occam.”
You can learn about MCAS on the TMS website https://tmsforacure.org It seems to be comorbid with ME/CFS and CIRS chronic inflammatory response syndrome. Some physicians believe it may cause ME/CFS. Others believe that mold causes MCAS. You follow the trail: Mold > MCAS > ME/CFS... it is not definitive, just a hypothesis.
Here are useful articles on ME/CFS + MCAS:
And I highly recommend reading this one: http://simmaronresearch.com/2018/09/brains-mast-cells-causing-chronic-fatigue-syndrome-mecfs/
Also within the functional medicine group, I have an RD who put me on an elimination diet, and I have a health coach who is an RD.
The Cleveland Clinic Functional Medicine Group takes insurance!!!! I have not found a single FMD who does, so yeah for me! After the initial visit in person I can do Skype-like virtual visits. These are not covered by my insurance but they certainly are convenient. The health coach is FREE and I Skype with her once a week!
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.