Dr. Chheda’s Road to ME/CFS
I met Dr. Chheda of the Center for Complex Diseases at Ron Davis’s Working Group Meetings funded by the Open Medicine Foundation. She graciously agreed to talk more about how she approaches treating ME/CFS in her practice. I was particularly eager to talk to one of the younger and more recent ME/CFS experts to enter this field.
She and Dr. Kaufman, her partner at the Center for Complex Diseases, exemplify a curiosity and willingness to learn about this illness that is gratifying. Dr. Kaufman, for instance, played a critical role in Jeff’s ability to get diagnosed with craniocervical instability – a condition that an immune oriented doctor like himself – would hardly be expected to know anything about.
Dr. Chheda, an infectious disease specialist, was looking for patients with complex diseases she could make a difference in.
Dr. Bela Chheda went to medical school in India, and then, stimulated by the challenge the field presents, specialized at USC in infectious diseases. Infectious diseases are different than, say, heart disease, because they can affect any part of the body; a complexity that appealed to her. She’s Board Certified in both Internal Medicine and Infectious Diseases.
She worked in infectious diseases at the huge USC County Hospital in Los Angeles. Few Infectious Disease departments encounter more unusual diseases than County/USC, a large public health hospital serving the health needs of the most populous county in the U.S. From HIV to all sorts of tropical diseases in LA’s large immigrant population, Dr Chheda said LA County was a great training ground.
A couple of years ago she moved to the San Francisco Bay Area, worked with mostly geriatric patients for a time, and then started looking for an area she felt she could make more of a difference in.
Looking to go into preventative medicine, she shadowed a bunch of integrative and functional practitioners for over a year. While their integrative/functional practices were appealing, their tendency to drop a Western medicine approach was not.
Then she shadowed Dr. David Kaufman – a practitioner with a similar path. Kaufman, who has won many accolades for his work with HIV and other diseases, was Medical Director for one of the largest HIV Centers in New York and the Director for HIV Clinical Research at St. Vincent’s Hospital. In 2012, looking for new challenges, Kaufman moved out to the Bay Area and worked with the Open Medicine Clinic for several years.
After working on the front lines of the HIV epidemic for decades, Kaufman wasn’t about to drop a Western Medicine approach either. With Kaufman, Chheda found the blend of Western and Integrative medicine she was looking for. Four things made the difference with Kaufman for her: the comprehensive approach he took, his smarts, his compassionate and empathetic approach, and then there were his patients.
Like Dr. Kaufman, Dr. Chheda loves complex problems. (They’re in the right place :))
She’d stumbled onto a set of patients she’d never seen before – patients she could possibly make a real difference with. Plus, they presented complex, fascinating cases – the kind that stimulated her intellectually – while rocking her world a bit as well.
Kaufman’s ME/CFS patients were much sicker that the younger and healthier patients she’d seen while working with the functional doctors. In fact, even to this doctor who’d worked in one of the larger public health hospitals in the country, who’s probably seen it all – they were often appallingly ill. She said that even now she’s sometimes staggered by just how sick some of her ME/CFS patients are. She said she’d just had a patient who told her things were looking up – they had enough strength to brush their teeth every other day.
In 2017, Dr.Kaufman and Dr. Chheda opened the Center for Complex Diseases which focuses on treating people suffering from ME/CFS, dysautonomia, autoimmune diseases, small intestine bacterial overgrowth (SIBO) syndromes, mast cell activation syndrome (MCAS) and chronic infectious diseases including tick borne diseases.
The Center’s website states:
“At the Center for Complex Diseases, we believe in the need to understand the interplay of the immune system, and its effect on patient health. Our personalized, multifaceted treatment aims to understand the myriad factors responsible for chronic complex diseases and design treatment plans based on patient history, laboratory data, and differential diagnosis.”
I asked her if the kind of profound disability she sometimes sees in ME/CFS is found in other diseases or if it is more unique to ME/CFS. She said that when profound disability like that shows up, it is usually in the elderly, but when it shows up in younger patients, it’s in established autoimmune diseases and drugs can often help ward off the worst ravages of those diseases.
Diagnostics
Many of the people with ME/CFS who come to her, on the other hand, have been misdiagnosed with depression, haven’t been treated properly, and, of course, drugs haven’t been developed for this disease.
I asked her how long it generally takes to know whether someone has ME/CFS or FM.
She answered that the first visit is really long. Two hours is what’s needed to dig deeply enough into the patient’s history to uncover leads or answers that have been buried by the passage of time. If her patients had gotten that kind of time with their prior doctors, at the very least she feels those doctors would have understood something was seriously wrong instead of dismissing them.
A great deal of blood is collected for testing. Panels examining metabolic disturbances, hormones, autoimmunity, thyroid, and pathogens, including tick-borne and vector borne diseases, are done.
The immune panel contains NK cell function, IgG subsets (she often finds them high or low), c-reactive protein (the highly sensitive test) and then there’s the SED or erythrocyte sedimentation rate (ESR).
Lab and insurance issues keep her from running two more general inflammatory markers (TGF-beta, C-4a) more often. (She doesn’t think TGF-beta is specific to mold as some do.)
Erythrocyte Sedimentation Rate (ESR)
ESR measured using the Westergren method
As an infectious disease specialist, Dr. Chheda has run thousands of ESR or SED rates. (High ESR rates are typically found in bacterial infections.) The ESR rate refers to how quickly red blood cells fall to the bottom of a test tube. When the red blood cells clump together and rapidly fall to the bottom of the tube, ESR or SED rates are increased.
Moderately raised ESR rates can reflect many different states including pregnancy, anemia, inflammation, infection, cancer, diabetes, heart disease and collagen vascular diseases. Very high SED rates can be found in kidney disease, cancer and collagen vascular diseases.
Dr. Chheda, however, typically sees a low ESR rate (@2) in her ME/CFS patients. In fact, low ESR rates are so common in ME/CFS that when she gets a normal reading she wonders if the person has something else.
Low ESR rates do occur in some diseases, but they’re not well studied, and most medical websites only provide a value for high ESR rates. They could, however, reflect the problems with red blood cells that Ron Davis’s Open Medicine Foundation sponsored study is finding. We’ll have more on low ESR rates in an upcoming blog.
Mast Cell Activation Syndrome
Mast cell activation syndrome (MCAS) describes just what it is – an ongoing chronic activation of the mast cells in the body which is difficult to diagnose and which can cause an incredibly wide array of symptoms.
Dr. Chheda typically runs a mast cell panel (tryptase, chromogranin, histamine, prostaglandins, IgE). She’s mostly abandoned the 24-hour urine tests that other doctors run because she felt she was rarely getting valid results – perhaps because the urine had not been constantly chilled by the patient and/or the lab.
With regards to the mast cell results:
- Tryptase – a small percentage of people have elevated tryptase. When tryptase levels are elevated, they’re usually borderline elevated (13-20)
- Chromogranin – another small percentage of patients have high chromogranin. (She noted that low stomach acid can also cause elevated chromogranin).
- Prostaglandins – The two main MCAS markers she uses involve the prostaglandins. Prostaglandin D2 is the most helpful marker, but because it can have diurnal variations, it may take several tests to capture the elevation. F2 alpha – which is a breakdown product from other cells as well as mast cells – is moderately diagnostic.
- IgE is not diagnostic, but high IgE levels suggest that something may be going on with the mast cells.
Biopsies of the GI tract or from colonoscopies can provide another clue if they show high numbers of mast cells are present. If a patient has a biopsy, she tries to get it stained and counted for mast cells. While it’s not clear yet what constitutes an abnormal number of mast cells, in her experience >30 is probably abnormal.
With mast cell activation syndrome producing a wide variety of symptoms and diagnostic tests results that are open to substantial interpretation, it’s clear that quite a bit of gray area exists in MCAS diagnostics. Often a trial of MCAS medication – which is usually well tolerated – is called for.
Dr. Chheda referred to a recent patient with a classic case of ME/CFS who did not appear at first blush to have MCAS. An antihistamine trial told the tale, though; while neither 1-2 antihistamines a day made a difference, adding a third one did – it completely removed the patient’s anxiety!
Dr. Chheda suggests starting with non-sedating antihistamines such as Claritin or Allegra. (She doesn’t recommend patients trying more than 2 antihistamines at a time on their own without supervision.) She also can use the herbal mast cell stabilizer called quercetin (500 mg twice a day). Ketotifen, she said, is a compounded antihistamine that is also a mast cell stabilizer.
If someone thinks they may have MCAS, she recommends reading Dr. Afrin’s book – Never Bet Against Occam.
Autoimmunity
Dr. Chedda usually runs a large autoimmune panel, which includes ANA, autoantibodies to thyroid, celiac proteins, rheumatoid factor, Sjogren’s Syndrome (SS), and early Sjogren’s antibodies. While noting that it’s not clear that a positive test indicates that early SS is present, she believes it suggests a problem with some type of systemic autoimmunity may be present.
Dr. Schofield found that 76% of patients with “refractory autoimmune disease” (most of whom had postural orthostatic tachycardia syndrome (POTS)) had antiphospholipid antibodies and 42% had novel Sjögren antibodies. (Several studies have found higher rates of these novel antibodies in Sjogren’s patients than the traditional antibodies tested for in the disease.) Thirty-two percent of the participants also tested positive for one or more thyroid antibodies. Very few tested positive on the Mayo Clinic’s autoimmune dysautonomia panel.
- Check out Lauren Stiles, the leader of Dysautonomia International, on the early Sjogren’s antibody tests here.
She runs an antiphospholipid panel (anti cardiolipin, beta2 glycoprotein, antiphosphatidylserine, prothrombin) in patients with a history of Raynaud’s, discoloration of upper or lower extremities, history of migraines (due to sludging of the blood), or history of stroke.
Cost considerations do play a factor in how many panels Dr. Chheda runs. She would run the Cell Trend autoantibody panel on everyone if it were not so costly. She’s found that most people test out in the low to moderate range, but it’s the very high or very low readings on that panel that are the most helpful to her diagnostically.
Very low readings suggest that any dysautonomia present is probably not autoimmune driven, while high readings provide a data point which could suggest autoimmunity is present and is playing a major role in the illness.
Cost precludes running the Cunningham panel on everyone as well. The Cam kinase results, in particular, can suggest an inflammatory process is going on.
Small Intestine Bowel Overgrowth (SIBO)
If Dr. Chheda finds evidence of autoimmunity, one of the first places she looks at and tries to fix is the gut, and that means testing for small intestinal bowel overgrowth (SIBO). SIBO refers to an overgrowth of bacteria in the small intestine which causes symptoms similar to irritable bowel syndrome including bloating, diarrhea or constipation, stomach pain, leaky gut, and immune issues.
Noting that the hydrogen/methane SIBO tests can have false negative results (i.e. may miss SIBO – when slow motility is also present), Dr. Chheda stated that she always runs the test and finds it positive 2/3 to maybe 3/4 of the time. If GI symptoms are present, Dr. Chheda thinks SIBO is probably present, even if the test is negative.
She aggressively treats SIBO, and sometimes that alone helps to shift the disease. She will use either a two-week course of Xafaxin, an antibiotic which is absorbed mostly in the gut, doesn’t impact other flora and is well tolerated – or a combination of antibiotics ( Xifaxin with flagyl or neomycin if methane is present) or herbs. Xafaxin has the advantage of quickly giving her information about the gut, while herbs, which can be effective, take 2-3 months to work and the change is more gradual.
Getting GI tract motility back to normal is critical as the SIBO will probably come back if it’s not fixed. (Motility refers to the speed at which food moves through the gut. Too high motility results in diarrhea, low motility results in constipation. Different stomach bacteria dominate in low or high GI motility states.)
Dr. Chheda noted that high levels of methane indicate the problem is not bacterial, and that some believe statins are the way to go. She’s cautious about that but noted that statins could be the future for the harder to treat methane associated SIBO.
- Check out a SIBO protocol (not examined or assessed by Dr. Chheda) – SIBO – Route-to-resolution
Spinal Issues
Craniocervical instability (CCI)
Craniocervical instability (CCI) occurs when lax ligaments that are no longer able to hold the head properly above the body cause the head to compress the brainstem, producing potentially a wide variety of symptoms. Spinal surgery enabled both Jeff and Jen Brea to recover from what had been diagnosed as severe cases of ME/CFS.
Dr. Chheda regularly tries a poor man’s office test to assess the possibility that CCI is present: when the patient is lying on the table she lifts the head up off the body (cervical traction) to see if symptoms are relieved. If they are and CCI is a possibility, she has an MRI done.
Cerebral spinal fluid leaks
If a person is hypermobile and has headaches that consistently get better when lying down and worse sitting up, Dr. Chedda suspects a cerebral spinal fluid leak may be present. If a leak is suspected, she uses a test that Dr. Carroll of Stanford recommends: she has a person lie flat for 48 hours and then stand up and see if their symptoms reappear. Leaks, she noted, show up more often in more hypermobile patients.
Intracranial hypertension
She occasionally sees indications of high intracranial pressure (intracranial hypertension) on lumbar puncture (LP), but noted that most of her patients have either not had LP’s done, or if they were done, the opening pressure was not measured – something she finds quite frustrating. Finding intracranial hypertension puts an extra focus on checking for CCI/AAI. She has tried acetozolamide and has seen it help, but only rarely.
General Treatment Plan
Newbies are generally easier to diagnose and treat. If a close examination of a patient’s history indicates that everything started with a tick or cat bite, everything may fall quickly into place. Wait ten years, though, as the memory fades and autoimmunity and other issues may have been added to the mix, and things get more complicated. (It’s clearly a good idea to take good notes and maintain a good history of your illness.)
Dr. Chheda takes a multiple pronged approach and likes to try to hit everything at once. Everyone gets a shot at low dose naltrexone (LDN). Almost everyone gets treated for SIBO and many people try histamine blockers for a couple of weeks. Dysautonomia, when present, is treated from a GI motility and POTS perspective.
Low Dose Naltrexone
About half her patients respond positively to LDN. Those that don’t respond to it but can tolerate it (most do) she keeps on the drug because of the many studies that suggest it is helpful. If people can’t tolerate the normal low starting dose (1.5 mgs), she titrates downwards. Some people start off on as low a dose as 0.1 mgs/day. Side effects usually pass within 2 weeks.
This drug does so many good things that she wants her patients taking the highest tolerated dose, up to 4.5 mg, even if they aren’t noticing a difference.
Check out many resources on LDN at Health Rising’s FM and ME/CFS LDN Resource Center
Autoimmunity
If the autoimmune panels suggest autoimmunity is present, the gut is given a strong emphasis. With regard to drugs, plaquenil has been a good drug that is generally well tolerated but can take up to 6-12 months to work. (Plaquenil or hydroxychloroquine was first used to treat malaria but is also used in autoimmune diseases such as rheumatoid arthritis and lupus.) Other autoimmune drugs can be tried, but she emphasized that they are not risk free.
IVIG
IVIG consists of antibodies drawn from thousands of healthy people which is used to treat a variety of immune disorders and sometimes disorders which fail to respond to other treatment. It’s very difficult to get insurance companies to approve this very expensive drug, but when available, Dr. Chheda has found it to be helpful, particularly with the autoimmune dysautonomia she sometimes finds. She does extensive autoimmune antibody testing and small fiber neuropathy testing to help support a request for IVIG.
She generally uses the subcutaneous (instead of the infused) form of IVIG and weekly dosing (instead of once a month). She’s found this approach cheaper and better tolerated, and while it can take a while to show benefits, it works as well in the long run.
If after a few months to six months good improvement is not seen, she drops the drug. If she sees partial improvement, she’ll either try to increase the dose or think of other drugs.
Check out Health Rising’s IVIG Series:
- An IVIG Chronic Fatigue Syndrome (ME/CFS) / POTS Treatment Success Story: IVIG#1
- Are Chronic Fatigue Syndrome, POTS and Fibromyalgia Autoimmune Dysautonomias? IVIG #2
- The Case for IVIG Treatment in Chronic Fatigue Syndrome (ME/CFS), Fibromyalgia, Small Fiber Neuropathy, and POTS: IVIG#3
Ehlers Danlos Syndrome, Hypermobility and Spinal Issue and Others
The Beighton Test is a self-questionnaire that is often used to assess whether hypermobility is present. Dr. Chedda noted, though, that people who don’t score positive on the Beighton Test or who don’t fit the criteria for Ehlers Danlos Syndrome (EDS) may still be hypermobile. She recently had a patient who scored low on the Beighton Test and seemed perfectly normal except she was able to pop her shoulder and hip in and out – which she promptly demonstrated.
Hypermobility puts people at an increased risk of craniocervical instability and cerebral spinal fluid leaks. Dr. Chheda noted that if you go deep enough into a person’s history, you will sometimes find some very odd types of hypermobility as well as a history of physical trauma such as whiplash or other kind of head injury. For a person who is hypermobile, she said, it doesn’t take much trauma to cause craniocervical instability (CCI) or a spinal fluid leak.
She guessed that more than half of her patients have some kind of hypermobility: whether that consists of stretchy skin, the ability to pop their joints in and out or some other type of hyperflexibility.
For some people, hypermobility is the starting point of their disease. For others, the hypermobility comes on later – perhaps as a side-effect of mast cell activation.
Other problematic conditions, such as median arcuate ligament syndrome (MALS), can be present. MALS occurs when the median arcuate ligament under the diaphragm compresses the autonomic center in the abdomen (celiac ganglia) and the celiac artery, causing pain and gut issues. It can be resolved surgically but is difficult to diagnose and treat.
Subsets or a Spectrum Disorder?
Dr. Chheda doesn’t think in terms of subsets. Instead, she believes that all these illnesses (MCAS, POTS, EDS, FM, ME/CFS) – are likely interrelated. They probably constitute a kind of vast, multi-dimensional spectrum disorder.
She visualizes the issues in her patients in terms of Venn diagrams. Hypermobility, MCAS, SIBO, pathogens, dysautonomia, autoimmunity, craniocervical instability, unusual sensitivities, etc. – each occupy a circle in these Venn diagrams – with each person having their own unique assemblage of circles – some larger than others.
Testing will reveal that one group of patients, for instance, will have tick-borne, vector-borne (insect-borne) diseases or herpesvirus reactivation. The pathogen circle in their unique Venn diagram will be larger than those without that issue.
The Future
Dr. Chheda had some good news about the future. The next ten years, she thinks, are going to be huge – not just for people with ME/CFS, but for ill people in general.
Stick around! Dr. Chedda thinks the next ten years are going to bring many more effective and safer drugs.
The medical field, she reported, is undergoing an explosion in multiple areas. It’s ever advancing ability to mine huge amounts of data is going to be increasingly helpful in correctly matching the right treatments with a person’s unique physiological and genetic makeup.
Immune therapies are going to become more powerful – and more commonly used – as the medical field learns how to pull out immune cells and target the specific immune issues present in a person’s illness.
Developing better means of drug delivery may not sound exciting but will have a major impact as drug companies produce drugs able to get right to the source of the problem, thus reducing their side effects and boosting their potency.
In short, ten years, Dr. Chheda believes, will bring us much more effective medicines. Nobody wants to be sick, but if you’re going to be sick, she said, 2019 is not a bad time to be ill. She encourages everyone to keep their hopes up and stick around.
She also invited physicians to come shadow her and Dr. Kaufman’s work and enter a fascinating field.
- Coming up shortly – the researcher you’ve never heard of who’s devoted the last four years of her life to understanding ME/CFS.
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Having all these things myself, its refreshing to hear that some doctors are looking at it as a whole and not focusing on just one thing. Hoping other doctors follow through and make these connections. However, not all will be treated the same as the WHYS may be different.
So, am I to understand that ME is not an illness but an umbrella for a variety of interrelated illnesses? Secondly, I am perplexed as to why no mention is made of PEM; this is so characteristic of this exertion intolerance disease. Thirdly, a diagnostic test won’t ever be found will it? Not if this is a cluster of diseases all intermeshed. I also wish we could have heard a bit about treatment outcomes. How successful is she with the patients? What functionality do they get restored? To speak of the future and say that all illness will benefit in the next ten years, is not very reassuring to the bed bound ME patient, who is waiting every second for a miracle. Having said all this, Dr Chedda sounds like a very committed and caring physician. It’s just that all this is adding confusion. Is there an ME disease or is ME just a general term for a number of similar conditions?
ME/CFS is no longer the simple disease that it was. I guess the question is what do you call a disease in which you often find MCAS, EDS, FM, POTS, etc.? (Since I don’t think I have MCAS, EDS, POTS – I may be simpler than most.) Whatever it is it’s often showing up an an assemblage of conditions – many of which are not very mainstream. My guess is that there are blends of ME/CFS.
PEM is such an integral part of this disease I didn’t see any reason to ask Dr. Chedda about it. While I think it’s highlighted more in ME/CFS than other diseases – we did after all coin the term – I imagine it’s actually found other diseases.
A unique biomarker? My guess is that we’re going to find something associated with high levels of PEM – absolutely – and then there are going to be different flavors; people with X characteristics and Y characteristics. It’s also possible that PEM is caused in different ways…
Perhaps it’s going to be end up like a plant ID key —–first you identify whether the central aspect is there – then click down the conditions; in the end you have ME/CFS with EDS.
Would Dr. Chedda be honest if she said the answer is going to come in the next year? If she had a miracle drug she was producing that she knew would work – then yes, but she’s a doctor treating patients – not a pharmaceutical company testing a drug for ME/CFS. She has no way of knowing if or when something specifically for ME/CFS – would that she did!
She does, however, to see better and more effective drugs, particularly immune drugs, coming down the pike and obviously expects they will be helpful for ME/CFS. They might not be the answer but they might get you out of bed and functional – who knows? When I asked her about the extreme disability seen in non-elderly people ME/CFS she noted that prior to the development of drugs for them people with autoimmune disorders typically were much worse off.
We don’t need to confuse symptoms with a label of a disease. PEM is a symptom with all these labels. These labels are labels for symptoms. The core issue is the WHY. What caused all these labels of symptoms to be combined into one person?
My feeling is the core issue is faulty Autoimmune system and Inflammation. Pick which comes first but definitely include them together.
Issie
Interesting to see that someone is finally noticing the low sed rate after all these years.
If Dr Chheda attends the OMF conference, then I’ll see her there.
“My name is Erik Johnson”, I am an Incline Village survivor and original prototype for Holmes CFS, and I can tell you about it.
But only if so called “researchers” bother themselves to ask.
https://www.survivingmold.com/community/erik-johnson
I agree. I’ve ALWAYS had very low SED rates and this is the first time I’ve ever heard anyone refer to that.
My SED rate is always low, too. Latest was 3 mm/h (ref. <=30). I think the docs presume this is a marker of health. I found a CFS/research article that stated 1 or 2 was a common finding but I can't find it now after my browser crashed.
We have something coming up on this very interesting subject.
It didn’t make any sense to me when I heard people keep saying “Nothing shows up on standard lab tests”
Sed rate was on almost all the old blood panels, before it was discarded because it didn’t point at “one particular disease”
It may not tell you what the specific problem is, but it sure indicates that there is one.
CIRS is also one of my issues and I also had mold exposure. Treating this has made a difference. But I’m still far from being well. I’m not in exposure, yet I still have markers as if I am. It is now being thought there could be other issues. My hypothesis is there is an internal issue making these markers high and appearing I’m in mold exposure, when I’m not. Dr. Stephen Fry also found an internal fungus in blood and organs and I have this too. Could this be causing it to be an internal fungal/mold issue, for me and others? Jury is still out.
Issie
Don’t worry Issie. Erik ‘Mold Warrior’ will insist you’re not well yet because you haven’t burned or tossed out all — and he does mean ALL — your belongings and moved to the gawd forsaken desert.
And that’s from someone who despite his book, etc., STILL has to avoid mold, or so he thinks, in order to stay well.
Meanwhile, others are improving without the so-called ‘Extreme Mold Avoidance’, the unscientific, fear-based protocol pushed by Erik and his pal Lisa Petrison.
Ooops, that’s Lisa Petrison PhD.
Mold is a tricky subject. I was taken by the fact that one of the tests that many doctors believe indicates mold exposure Dr. Chheda believes is simply a general marker of inflammation.
I just backpacked the Tahoe Rim Trail.
I’m still living where I was during the Tahoe outbreak, North Lake Tahoe.
https://en.wikipedia.org/wiki/Tahoe_Rim_Trail
It’s really been astonishing how hard the “ME/CFS community” fought to suppress the mold element to this disease.
I’ve never understood why people who say they are suffering so much would do this. I suggest that when all the dust has settled, there should be a sociological investigation of how people behaved during this bizarre “CFS” debacle.
No, no, no!
I disagree. Yes, doctors have been slow but I think most of our ME/CFS experts certainly agree that mold can be a contributing factor. I remember years ago hearing Dr. Peterson telling a patient – after she had gotten well – that if she moved back into her moldy house she was going to get sick again. (He was right.)
I think patients have generally embraced the idea that mold exposure can either cause or be a contributing factor to ME/cFS. I certainly have. It makes perfect sense to me.
There’s not a lot of certainty about the science. In that realm and regarding the very expensive doctors, testing and treatments, I think caution is warranted.
Ouch Marcia!
Tell us what you really think! 🙂
I do think you point out an important point – not much science, a lot of untested ideas from doctors, a lot of claims made – that’s where we are with mold. It’s not the doctor’s fault. For some reason, at least so far as I can tell, it just hasn’t captured researchers attention.
On the other hand, the recovery stories of people practicing mold avoidance are amazing.
Definitely IMHO a subset of ME/CFS.
I remember that.
Dr Peterson and I were discussing the mold factor and he turned to tell one of his ampligen patients, Linda B, that she needed to get out of her moldy place next to the river in Reno.
She did move to a better house in a better part of town, but she decided to take all her contaminated possessions with her, so improvement was minimal.
Naturally, I thought this meant he was finally going to take interest in it and even make some public statements about how toxic mold actually started the whole CFS debacle, but he said nothing.
And still, not a single so called “ME/CFS researcher” has looked into the history and evidence of this episode, despite their nonsense claims that they have done so.
Oh, I’m on board with CIRS and everything said in regard to it. I did get rid of all things that couldn’t be properly cleaned and am very careful about exposure. I can tell very quickly if I’m in exposure now, as my detox and change of diet and habits make me even more tuned in. But this is only one piece of my puzzle. It is not the whole picture for me. But addressing this has made more improvement for me than anything else I’ve tried.
This is a very important piece of some people’s puzzle.
I agree with Issie and Cort that mold exposure can certainly play a role in many people’s development of ME/CFS. And that getting out of a moldy house and addressing mold toxicity can improve symptoms.
What I disagree with is this ‘extreme avoidance’ protocol, that Erik once again confirmed is necessary in order to recover. It’s worth pointing out I guess again, that Erik isn’t recovered. He must continue to avoid it in order to function. Meanwhile, others have the mold remediated, others move out but DON’T toss out everything they’ve ever owned, and yet they continue to recover. Perhaps what doctors are rejecting is THAT part of his hypothesis, and not that mold may play an issue in some cases.
Erik’s BFF, Dr. Ritchie Shoemaker has made a fortune off these patients, despite his nonsensical claim that 25% of the population has a ‘dreaded’ mold gene, a claim with absolutely no scientific evidence to back it up. This egregious error was thoroughly discussed and discredited 4-5 years ago on Cort’s old stomping grounds, Phoenix Rising, yet thanks to Petrison and Johnson — and Shoemaker — this shameful lie continues to reverberate within the community.
Think about it: If 25% of the population had this mold gene, more than 250,000 people — a quarter of a million people — from the Hurricane Katrina disaster would be sick with ME/CFS. They’re not.
Don’t even get me started on Petrison’s nonsensical ‘Locations Effect’ website.
Anyway, methinks Erik will never be happy until a statue of his likeness is erected in Tahoe for his efforts. Not sure if folks would want to climb a mountain to see it though…
During the 1985 Lake Tahoe Mystery Illness outbreak, we got massive belief, in fact it scared the whole country into staying away from Tahoe and almost ruined the economy, but very little interest from researchers.
Oh, there were a few who invented theories from afar and tried to dictate them as if they were proven fact, but no serious epidemiologal investigation was ever done.
I felt this was hypocritical and frankly, “dishonest”, as these “researchers” were making claims about how desperately they wanted to “solve CFS”.
When I saw they were 100% ignorant of toxic mold, completely unable to respond in any meaningful way to our requests to look into it, I stepped up to offer my assistance.
To my utter amazement, I got total disinterest and animosity from these “good CFS researchers”
Wow!
They claim to want to “solve CFS” but act like this?
So I saw this as being just as much of an examination of the bizarre behavior of academics than about the mold clue.
It’s not every day one gets the opportunity to unveil a 100% rate of medical and research malfeasance.
So I decided to keep with it and see how far these “ME/CFS doctors” were going to push it.
And here we are.
35 years since the original Tahoe malady patients asked for help with mold, and not a single honest research response from within this community.
Dr Ritchie Shoemaker, a biotoxin researcher and not part of the “ME/CFS” rabble… was the only doctor in the world who was able to identify the clusters for what they were, and said something about it.
The mold factor, interesting as it is, is merely the evidence that substantiates what a bunch of frauds that the rest of the ME/CFS researchers are.
They need a wake up call on how to do honest science.
This is definitely one for the history books.
Erik, again repeating the story he’s told a million times. Well, maybe 999,999 times.
” When I saw they were 100% ignorant of toxic mold, completely unable to respond in any meaningful way to our requests to look into it, I stepped up to offer my assistance.
To my utter amazement, I got total disinterest and animosity from these “good CFS researchers”
So again, it’s all about Erik. Never ever answers anyone’s legitimate questions, never addresses the lie that 25% of the population has a ‘dreaded’ mold gene, etc…just repeats the same ‘no one listened to ME’ sob story.
Sad.
http://www.cortjohnson.org/blog/2014/05/02/constant-vigilance-julie-rehmeyers-mecfs-recovery-story/
“Constant Vigilance”
Julie Rehmeyer’s recovery story.
While I was in Death Valley, I felt slightly better, but well within the range of normal variability. Before I went home, I went to Reno to visit Erik Johnson, the “mold warrior” who was one of the famous Tahoe cohort and who was the first ME patient to figure out the role of mold in his illness. He took me to some bad buildings around Lake Tahoe to help me learn the early symptoms of exposure.
I was extremely skeptical at that point, not being at all sure that this theory applied to me, and I was even more skeptical when I didn’t seem to feel much in the bad places he took me to. But indeed, a few hours after my “mold tour,” I could barely walk (a symptom I hadn’t been having much at that particular period). That was the first indication that I was hypersensitive to mold. I was very excited and fired off emails to friends: “Woohoo! I can’t walk!”
Dr Scott McMahon speaking at the Jan 2019 Fort Lauderdale Mold Congress.
The mold community knows all about “Mold at Ground Zero for CFS”
It’s just the “ME/CFS researchers” who either don’t know, or actually, are pretending not to know, since I personally made sure they heard all about it.
https://youtu.be/9zqiPNnqvOA
Researchers have no right to just blow off mold as nothing more than another trigger.
This was documented as the very clue that started the entire Holmes investigation, and which led to the creation of the CFS syndrome.
It is a disservice to science that they break the rules of “Basic Science 101” and common sense, just to try and crush out this factor.
And their misbehavior is going to bite them on the ass.
https://youtu.be/v9kpZaVB8x0
Issie is hitting the bull’s eye. What is the core issue in this condition? A person is absolutely normal, then one day gets an infection from a minor surgery, and then say a flu and then bang–overnight wakes up with that horrid sick feeling, this PEM–a symptom the person never had before in his/her entire life. And the nightmare begins. What is the cause, the core issue of what is really going on in this condition? How can a person be walking around one day and then wake up the next morning and be unable to get out of bed. This is what I have seen. What ‘thing’ gives in the body? I guess the science has not yet explained this. And until it is explained, perhaps we are just walking around symptoms.
Cortene thinks they can explain it with a sudden receptor switch on the neurons. Some autoimmune diseases come on very rapidly as well: all of sudden – bam! Everything is changed. I don’t know how often it happens but sometimes it does.
Cort – Speaking of Cortene, do you know if their results will be published soon?
Not sure when results will be published but expect a statement from them fairly soon.
How about an intracellular glutathione crisis triggered by a combination of dodgy genes and infectious assault, chemical or heavy metal exposure, leaky gut and LPS, or intense or chronic stress?
That fits the bill! That could be it….
Perrier, were you or anyone you know truly ‘absolutely normal’ before you ‘bang overnight’ became ill. I don’t know of anyone with ME/CFS who, if you ask them to go into detail, was just perfectly healthy (‘absolutely normal’) before coming down with this horrible illness.
Dear Marcia,
I am not ill but a family member is: yes, she was well, all she had were recurrent strep throat infections in late childhood and then in adulthood. And she was very active. So, no one is perfectly healthy, but I would say completely normal. And this nightmare hit after a mismanaged surgery, post surgical infection, and then bang, overnight.
Thanks for your reply Perrier, very interesting.
I’m sure you’ve heard how even some marathoners or other sports figures ‘suddenly’ come down with ME/CFS? I have a theory, and it’s just that, that those cases may come down to a combination of excessive, chronic stress to the body, plus an alteration in their microbiome.
There are studies that show that the microbiome is altered:
1. By chronic stress/stressors
2. In exercised-induced stress
3. And is of course depleted by the overuse of antibiotics.
So they could’ve unknowingly been pushing themselves so hard that their gut microbiome becomes dysfunctional, their th1/th2 immunity becomes altered, and opens the door for infections to take hold.
???
But just this year they’ve discovered that some elite athletes have higher levels of a certain bacteria that boosted the performance of mice when given to them. My point — working on the gut, and the microbiome, has been helpful for many, and might be something to consider.
And certainly, and also sadly, some get ME/CFS after botched surgery, especially that surrounding or involving the gut. Perhaps due to bacterial translocation, just as in leaky gut/intestinal permeability.
I hope you find some answers, and I hope the docs at Stanford will consider emphasizing the restoration of gut health as they continue their work.
Me. In 2014 I underwent a partial laparoscopic hysterectomy. Went home the next day and was fine for the first three weeks, when I developed a nasty kidney infection. My incompetent doctor at first misdiagnosed me with a UTI, and delayed treatment for a week. When he realized it was actually a kidney infection, he prescribed me Cipro for 10 days. Even before the end of the treatment, I was sick as a dog. I felt horrible widespread pain, like I had NEVER experienced before. Worse than the pain from the kidney infection, which is already excruciating. I also felt exhaustion, PEM, and couldn’t stand up for more than a couple of minutes without feeling short of breath, and having tachycardia. I felt so weak that I didn’t have enough energy to bite my fingernails, something I’d done my entire life. Before falling sick, I was a runner and had never had any health problems, except for measles as a child. I have been seeing Dr. Vera since the year I got sick, but have not responded to any treatment. I have been house/bedbound for the last 3 years. I have tried everything: LDN, xifaxan, anti-virals, you name it. My body can’t tolerate anything. Now I suspect I might’ve poisoned by Cipro. BTW, Cort, have you ever published any articles about fluoroquinolone toxicity and our illnesses? Because I am not able to tolerate any antibiotic, I strongly suspect that I was poisoned. Dr. Vera has dx me with POTS/FM/CFS/MCAS, and multiple chemical & food sensitivities. I can’t even eat most foods. My body also reacts with severe pain. My cognitive function is also severely impaired. My husband has had MS for almost 30 years, and his memory is sharper than mine. Another strong indicator of FQ’s toxicity. I am now looking into CCI And FQ’s. I’m going to test for aortic aneurysm, a possibility with folks who have been poisoned.
OMG I was passed on an article on fluoroquinolone toxicity I think it is. Just haven’t gotten to it. Astonishing stuff. So sorry you are going through this – I will get to it
I’m a patient of Dr. Kaufman’s and have done well with his help. He is wonderful. I also am very familiar with Dr. Chedda’s approach. They are an excellent team and do a great job with patients with all the variations of this illness and set of illnesses. The new doctor who recently joined them is a great addition.
Today, your article said:
“Looking to go into preventative medicine, she shadowed a bunch of integrative and functional practitioners for over a year. While their integrative/functional practices were appealing, their tendency to drop a Western medicine approach was not.
…
After working on the front lines of the HIV epidemic for decades, Kaufman wasn’t about to drop a Western Medicine approach either. With Kaufman, Chheda found the blend of Western and Integrative medicine she was looking for.”
My one criticism of Dr. Kaufman is that he is emphatically not an integrative/functional medicine doctor, and from what I’ve observed, nor is Chedda. Kaufman is brilliant, curious, continually learning, and is respectful of what my functional medicine doctors do, but I would definitely not be where I am now without a significant functional medicine component of my treatment, directed by top-tier trained MDs and NDs.
Nancy Klimas told me that since she’s been integrating functional medicine into her team, the patients who have used it more fully have done better, in addition to her already excellent care.
Dan Peterson also told me that his patients working with alternative medicine practitioners in the community, outside of his care, have done better, too, with this care as an adjunct to what he can offer, rather than those who just see him.
I think its wonderful you highlighted Dr. Chedda, especially as many of us have been extremely disappointed with what we heard from Dr. Bateman in April and the trio of clinicians at the June conference at Harvard.
Patients need more. I believe the success rate is so dismal because patients don’t get adequate and comprehensive testing and then don’t have access to a really robust set of heavy duty conventional medicine AND functional medicine treatments. The more all of these tools can be integrated into a personalized treatment plan for each patient, the more successes we will have.
Thanks. Your point is well taken – the most diverse set of options is best and there is quite a range particularly in the U.S. where, if you have the money, so many options and so much opportunity is available. I think personalized medicine will be key – it’s getting access to it that’s the difficulty and I don’t know if there’s an answer to that. Obviously studies which demonstrate efficacy are really important but our medical research system is not designed to do multi-treatment studies. It’s a real problem.
If you don’t mind me asking, what do you mean by disappointed in what you heard from Dr. Bateman and the trio of clinicians at the Harvard conference?
What Dr Bateman has shared publicly is very conservative, goid strategy for POTS, but not addressing many other facets of this multifaceted illness.
The only treatment I heard from the Harvard trio was psychiatric drugs, which might help depression, but deplete the body of much needed folate, without addressing the many abnormalities found in this disease. If they are doing anything else for patients, they were sure quiet about it. A patient I know with serious medical issues has been torally sidelined in getting treatment by being labeled as having a “functional disorder” and treated as a psych patient. Turns out Harvard is doing big business in functional and psychosomatic disorders…
By contrast, Systrom’s team and Van Elzakker are doing great work.
You are lucky to be able to see Dr. Kaufman, since he doesn’t take new patients, and also to have found a functional medicine doctor who is also helping you. I would be happy having an MD like Dr. Chheda or Dr. Kaufman in my corner, at least looking for the answers that Western medicine can offer. To have two effective doctors in your corner is almost miraculous when it comes to ME/CFS.
The reality is that many of us are too sick to go doctor shopping and are stuck using Dr. Google to try to figure out why we are suffering, and to guess which of the infinite permutations and combinations of patient-recommended treatments to try. (These treatments run the gamut from supplement combinations to major “lifestyle” changes like sleeping for a few weeks in a tent in the desert.)
In any case, it would be very useful to hear the perspective of a functional medicine doctor like yours. How have they helped you? What do they offer that a traditional doctor cannot or will not provide? And how do we as patients differentiate between a skilled functional doctor who really cares from doctors who seem to label themselves as holistic or complementary in order to prey on the desperate?
Dear ME/CFS patient, would you be willing to share with us how sick you were please? You indicated you are doing better, but this too is not really care. And what sorts of meds did Dr Kaufman treat you with? What other treatments did you have? We are all very anxious to help our loved ones. Thanks to you, and to Cort for his extraordinary hard work.
I have been on antivirals, POTS and MCAS meds, and IVIG.
My functional med doctors have helped me with:
– mold and heavy metal toxicity
– hormones (all types)
– customized amino protocol
– mito cocktails
– natural immunomodulators and mast cell stabilizers
– both prescription drugs and supplements
– testing to uncover and monitor the above problems.
Hi, my husband sees Dr Chheda and she’s fantastic. We are looking for a functional medicine doctor with experience treating those with ME/CFS, ideally in the SF Bay Area. Can you please share the names of your functional doctors? Thanks so much!
Jeez, ME/CFS Patient…who haven’t you seen or talked to? Must be nice to be a millionaire…
The Infectious Disease doctor’s office I spoke to this week, Dr Jacobs with UPMC, doesn’t “support this diagnosis”. We have got to inform practising physicians and med students that this is a real,disabling condition.
Jeez…Did they have anything for you?
Karen, I have UPMC as well and don’t know where to turn. I’ve been through the whole progression, from bed-ridden to now fluctuating between poor and moderate. Every time I try to work I last about a month (fueled by adrenaline from pushing myself), and I get another illness on top of what I have and have to quit. I’ve been denied disability, but thankful for my friends and a roof over my head. So far I’ve avoided the psych stamp, but the struggle after almost 20 years is turning me into a psych patient. I started out as a gifted student and talented multi-sport athlete who went to college a year early.
Oh, I forgot to mention, I am smack dab in Lyme country PA and so many have been affected that the ignorance is starting to lift like a fog.
Me too Debs. Went to college early, very athletic, excellent grades – doing really well and then bam! No reason at all for me to get sick…Wasn’t even burning the midnight oil. Just one very big mystery…
I believe there are Diagnostic tests available but they are not using them yet HATS Hereditary Alpha Trypasemia Syndrome multiple copies of the tryptase Gene & also
tryptase blood test can be in Normal range at 10. Anything above 8 is highly likely copies of the Gene & GSD Panels Glycogen Storage Disease. Very surprised she does
not mention these at all…
When you’re stuck in the UK, and your (otherwise excellent) GP has told you that there is nothing more the NHS can do for you, what do you do? She has always without fail, referred me for tests etc if I highlight a new theory/possibility, but everything comes back more or less normal – with the exception of a clutch of dodgy EBV results many many years ago, for which I was told they could do nothing. So I follow the research, have attended the ME conference in London, and fund interventions myself if I feel there is enough evidence for it to stand a chance of helping me. Still ill, 15+ years on. But I count myself lucky in that I am not housebound; however it’s a tough lonely life. How do we convince the medical movement in the UK that we urgently need more attention?
Hi Wetherlam, I too am stuck in the UK feeling lost and utterly abandoned by the medical profession as a whole. It is thought that I have CFS w POTS and/or Lyme disease. My GP said it didn’t really matter which I have as nothing can be done for either. Brilliant. So frustrating when clearly there are effective medications if only some closer investigations are made; especially as I’m only two years in. I will keep an eye on developments in the US however feel that we in the UK will be years behind any progress made…. Maybe we will have to consider relocating if we can muster the energy for such an upheaval?! 🙂
Dr Chheda is a great physician, researcher and advocate for her patients. She is willing to work with physicians around the world in caring for their patients with ME/CFS. I am grateful Dr Chheda has made the switch from mainstream medicine and is now dedicated to helping the ME/CFS community.
I see Dr Chheda and I have been happy with her. I went from almost need a wheelchair (been talking to my husband about buying one) to moderate. My PEM of 4 to 12 days of rest after 3 hrs social activities to one day rest. My sore throat after social event is now gone. I thought it was from talking.
The treatments aremain stream medications plus a holistic herb/probiotics if needed. The drugs have the biggest impact for me besides NAC.
My GP said I was wasting my money when I told her I was seeing Dr Chheda. The next time I saw my GP she was surprised I was doing well. I looking for a new GP.
I’m happy with Dr Chheda and I do recommend her. I now looking forward to retiring next year and do some traveling. I love to be in remission but being moderate is great. Hopefully I will reach mild.
The biggest point is my body is under less stress. It doesn’t feel like it’s fighting an illness 24/7. I’m more comfortable.
Congratulations! That is outstanding improvement. So you haven’t returned to full health – but you are pretty functional. What a change in quality of life! I hope you keep improving and trying new things and happy travels!
Do you feel comfortable saying which drugs for which aspects of your ME/CFS have worked well?
Thanks for the reminder about NAC – I keep forgetting to add that to my list. 🙂
I so am very interested in what medications she recommends. Nac and DRibose are the biggest supplemental helpers so far, in addition to water with electrolytes. I am so happy for you that she helped you improve.
This is all way over my head (not just this, but everything medical). Diagnosed with mecfs in 1990. Since then have been diagnosed with spinal stenosis & DDD (and other spinal issues), reversed cervical lordosis, early RA, Lymphocytic Colitis, etc. So how do I find a doctor that will actually help me? I’ve been basically on my own for 30 years now and I can’t keep up with it any more. And insurance sucks.
Lis, I am in the very same boat with the exact same list of problems that you have, minus RA, although my ANA is high. Each time I attempt to work I get something else added to my list… I have collaginous colitis and constant diarrhea. Topped it off with recurring Lyme disease (and who knows what else from those sick little critters.) I have pectus excavitum. Physical therapy for my neck irritated the nerves and now i have constant headaches, occipital neuralgia, and the myriad of bizarre symptoms called “chronic migraine”. I was diagnosed with “autoimmune thyroiditis that is indistinguishable from CFS/post viral fatigue syndrome” in 2002. What’s worsening is the short blanks in my memory. If I try to do something about my situation it frustrates me to no end. It’s surreal. So I keep positive thinking and focus on other things – until I get a downturn and then I do the frantic search for a cure again…
I don’t understand why there isn’t a huge patient outcry about the fees charged. She doesn’t take insurance and you have to pay $1,000 for a single visit. This is horrifying. In addition to the massive clinical care crisis we face–with fewer than 2 dozen specialists in the entire USA–those who *are* specialists either don’t take new patients, have 2-3 YEAR long wait lists, or charge inhuman fees (without insurance or sliding scale options). Of course, those who do this I’m sure know that they can get away with it, given that there are 2 million people in the US who are desperate for help and hardly any doctors. But it’s sickening to see physicians who KNOW how debilitated we are (and consequently, most of us are poor because we can’t work proper full-time jobs) and still have massive fees like that, making it even more impossible for us to get the care that we need — and have a *right* to in virtue of our very humanity.
In Germany, there is a clinic for ME/CFC that is called the BurnOut Clinic https://www.burn-out-muenchen.de/therapie/index.php The list of tests and treatments are impressive. It appears that most of the testing is paid by their form of insurance with up to 800 euros being the maximum out of pocket costs. I don’t know if they take patients from other countries.
How do I find a list of doctors that specialize in this?
Do we have any experts like this whom we can visit in the UK?
I know we have Dr MyHill, but she mainly focuses on the mitochondria.
Is there anyone here that could truly help us move forward.
It’s my 10 th anniversary of this illness in October and I continue to decline. I’m now 85-99% bed bound.
I swing from giving up and giving in, to reading articles like this and thinking , surely there must be someone here that can help us!
Most of what I read on your posts Cort just don’t happen here in the UK to my knowledge ?.
Unfortunately not. I think there are some (Dr. Myhill) but not many.