Will 2016 Finally be Montoya's Year? Taking Stock of the Stanford ME/CFS Initiative

[Cort]

The spring newsletter from the Stanford ME/CFS Initiative lead by Dr. Montoya is out and it's time, once again, to take stock of this important program. With Stanford containing some of the brightest minds and best tools in medicine, studies coming out of the University have their own kind of legitimacy.

[fright]

[/fright] Montoya first stumbled onto chronic fatigue syndrome in 2004 but by 2005 he knew he wanted to study it. When he told his mentor that he was told he'd wind up like a drunk in the gutter if he did so.

Mammoth Single Donation

Montoya courageously persisted, however, and over time became one of our most compelling spokespeople. In 2008 he received a $5 million dollar grant from an anonymous donor. When asked if the money would make a difference, Montoya said give me five years. In 2009 the Stanford ME/CFS Initiative was borne.

Getting the Initiative off the ground couldn't have come easy. Dr. Montoya appeared to be successful, though, in enrolling members of the Stanford faculty to study a disease that most of them probably had little interest in. Ultimately he was able to put together an array of studies examining the genes, the immune system, the brain, the heart and pathogens, plus he he participated in the Lipkin/Hornig blood cytokine studies and the Synergy trial. In 2014 Montoya got the Stanford School of Medicine to sponsor what turned out to be a very successful Symposium on ME/CFS.

Impactful Symposium

The March 2014 Stanford Symposium on ME/CFS packed more bang for the buck than any conference I could remember. Jarred Younger's findings suggested leptin could be the make or break immune factor for ME/CFS. Kaushal's gene expression findings suggested ME/CFS was very similar to ‘systemic inflammatory syndrome’. The Zinn's found that ME/CFS patients were in a hypometabolic state, highlighted the brainstem and suggested ME/CFS might be a "limbic encephalitis". Montoya called his cytokine results (high pro-inflammatory/low anti-inflammatory") the "perfect storm", and Dr. Byron Hyde called Dr. Zeineh's presentation the MRI results the "most amazing" of its kind that he'd seen in ME/CFS.

Five years after its launch the Stanford ME/CFS Initiative finally appeared to be humming and the stage appeared to be set for a series of important findings. Particularly interesting was Montoya's 600 person (200 ME/CFS, 400 controls) study involving Dr. Mark Davis's mighty CyToF immune machine.

2015 Newsletter

[fright]

[/fright]That, however, has been it. A year ago Health Rising published a blog titled "Tipping Point: The Stanford Chronic Fatigue Initiative's Big Year is here" which highlighted the few publications to have come out of the group. (Younger published his leptin paper in 2013 and Zeineh published his small brain study in 2015). The 2015 Stanford ME/CFS Initiative Newsletter suggested that publication for most studies was just around the corner. It stated that:

• Pathogen Study - A manuscript featuring "exciting" results from a collaboration with Ian Lipkin and Mady Hornig was under preparation for submission to a journal.
• Gene and Immune Study - The final analysis of the big gene expression and immune study with Mark Davis was finishing up with a manuscript submission expected shortly.
• Cardiovascular Health - Two manuscripts examining cardiovascular health and exercise in ME/CFS were in preparation for publication.
• Zinn's Brain Imagining - Two manuscripts from the Zinn's were in review for publication.
• Genetic and Immune Study - The final analysis of a genetic and immune study from a Department of Defense (DoD) grant was underway and a manuscript was due to begin shortly.

New Studies - Plus the newsletter stated that four other studies - three of which were to begin in the next couple of months - were on the docket. They included

• A gene expression Lyme Disease study with Mark Davis - to begin in late spring of 2015
• A Severely Ill Patients study - to begin in the summer of 2015
• An HPA axis Biomarkers study - to begin in the summer of 2015
• A Universal Pathogen study looking for pathogens in the guts, lymph nodes, bone marrow and NK cells - no date for beginning mentioned.

2015, however, was not the breakthrough year for the Stanford Initiative. Once again no studies were published.

2016 Newsletter

The Spring 2016 Newsletter, however, looked in many ways like the 2015 newsletter.

• Zeineh Brain Imaging Study - Progress was made in the Zeineh grant application. It was submitted but turned down and is being resubmitted.
• Montoya/Lipkin/Hornig Pathogen Study -As in 2015, it stated that the group is still in the process of preparing a manuscript.
• Gene Expression and Immune Data w/ Mark Davis - Jill Anderson, reported (similar to 2015) that the data analysis from the big 600 person study was finishing up, and a manuscript would be submitted shortly.
• Cardiovascular and Endothelial Cell Study - Jill Anderson reported that Dr. Hadad had a new finding he was hoping to incorporate in a study. She reported (as in 2015), that two manuscripts for cardiovascular studies including one examining endothelial function and cytokine levels after exercise are being prepared for publication.
• The Zinn's Brain Studies - as in 2015, two studies by the Zinn's were reported to be in preparation for publication. (The Zinn's gathered and presented their data at the Symposium but are now listed as collaborators of Dr. Maldonado.) The Zinn's moved to Chicago some time ago where they redid one of their studies with new participants and published it. They also published a review paper and expect several more studies to be published soon.
• DoD Gene and Immune Profiling Study - As was reported last year the gene and immune profiling results are still being prepared for publication. A biostatistician has been added to the project

New Studies

• The Lyme Disease Study with Mark Davis - has moved forward and begun accepting patients for recruitment.
• The severely ill patients study - reported last year to begin in the summer of 2015, the severely ill patients study is now slated to begin "within the next year".
• The Universal Pathogen Study - no date was given for startup last year. Jill Anderson reported that a grant submission is expected in fall (with the study, if the submission is successful, presumably to begin in 2017.)
• The HPA axis study - expected in begin in summer of 2015 - the HPA axis study is now expected to begin in late Spring of 2016
• New GWS Study - Montoya and Zeineh have submitted a grant application for an entirely new project on brain and immune signatures in GWS.
• ME/CFS Brain and Tissue Bank - the newsletter reported that the Initiative has begun to address the regulatory hurdles of establishing a brain and tissue bank.

Ambitious Effort But Low ROI Thus Far

The first thing to note is that Montoya and the Stanford ME/CFS Initiative are engaged in a substantial and ambitious body of work which if successful could tell us much. Montoya has also continued to reach out to begin or at least fashion new, intriguing studies. The Universal Pathogen study, in particular, would fill a major hole in pathogen research.

Eight years after getting the big donation (and more donations surely followed), and three years after Montoya's deadline ("give me five years") the Stanford ME/CFS Initiative still, however, has published just two studies. Since the promising Stanford Symposium of two years ago, it has published just one.

[fright]

[/fright]A pattern has emerged of over-promise and delayed results - something that honestly may not be too uncommon in medical research. Much of the 2016 newsletter looked like the 2015 one. The return on investment (ROI) from that initial investment could change quickly but seems pretty low thus far.

In the meantime the University of Alabama at Birmingham lured away Jared Younger with a promise of his own lab, and the Zinn's moved to Chicago to work with Lenny Jason where they promptly published a study using new ME/CFS patients. Dr. Montoya also lost the researcher (Kaushal) behind the gene expression project.

On the other hand, Dr. Montoya has continued to recruit researchers including a PhD and a gastroenterologist (Universal Pathogen Study) and an endocrinologist, and has, thanks to a donation, acquired the services of a much needed biostatistician, Donn Garvert MS. He also has a new researcher working on the gene expression study, and recruited a new research assistant. He's also working with immune expert Mark Davis and Holden Maecker, the Director of the Human Immune Monitoring project.

Full Plate?

Dr. Montoya is still the Director of the National Reference Laboratory for the Study and Diagnosis of Toxoplasmosis; is a doctor seeing patients at the Infectious Disease Clinic and after 2009, has been the Director of the Stanford ME/CFS Initiative; i.e. he has a very full plate. (Montoya has co-authored over 20 studies/papers on toxoplasmosis since the Stanford ME/CFS Initiative began in 2009. His 2013 ME/CFS valganciclovir study, however, took five years after data collection had ended (2008) to get published.)

Is This the Year?

The Initiative still holds great promise, and research studies can take years. The 600 person immune study was reportedly the largest Mark Davis had ever run, and could tell us much about ME/CFS. If the 2016 newsletter is correct several major studies may be close to publication. Eight years after Montoya received his big donation 2016 will, hopefully, be the year of the Stanford Chronic ME/CFS Initiative.

 

[Rachel Riggs]

I wonder if he's losing focus -- returning to Toxoplasmosis as his primary interest?

I sure hope not - but I will say that while I am grateful to be under the care of his PA, Katie - it seems they follow a one-size-fits-all protocol: LDN + antivirals. I inquired about the possibility of Lyme as the precipitating factor for my CFS and was told there was no need to test as only approximately 5% of their patients have Lyme. Well, I happen to think that is a substantial number - especially if you are one of the 5% - and therefore warrants testing. I feel they should be taking a no stone unturned approach.

Could it be that their treatment protocol is becoming outdated as more attention is placed on a broader variety of causative factors such as mycotoxins, Lyme etc. - and treating them concurrently?

 

[Bottsie]

I wonder if he's losing focus -- returning to Toxoplasmosis as his primary interest?

I sure hope not - but I will say that while I am grateful to be under the care of his PA, Katie - it seems they follow a one-size-fits-all protocol: LDN + antivirals. I inquired about the possibility of Lyme as the precipitating factor for my CFS and was told there was no need to test as only approximately 5% of their patients have Lyme. Well, I happen to think that is a substantial number - especially if you are one of the 5% - and therefore warrants testing. I feel they should be taking a no stone unturned approach.

Could it be that their treatment protocol is becoming outdated as more attention is placed on a broader variety of causative factors such as mycotoxins, Lyme etc. - and treating them concurrently?

Rachel, I have traveled cross-country twice to see Dr. Montoya's PA, Jane. I have been taking antivirals and LDN as well. I had one brief 3-month window of some improvement on acyclovir (no LDN) when I first started treatment there. On my second visit, after trying valcyclovir, I inquired about being tested at Igenex Labs in CA for Lyme. Jane pooh-poohed that saying that all of their tests come back positive. According to the Lyme sites, most other tests come back negative. What's a patient to do??? So, I left with my script for valgancyclovir and LDN, which has only helped me maintain, not improve. I am wondering if I should totally exhaust my finances and what little energy I have for another appointment. My local PCP has agreed to try me on the first antiviral again to see if it will work again. (Im)patiently waiting....waiting...waiting for some kind of research results from Montoya...or Dr. Ron Davis' team at Open Medicine Foundation. Right now...my money is on OMF. They are independently funded and have some high-caliber intellects working on this. I will always love Dr. Montoya. Through his youtube video, he gave me my first real hope for treatment. I wish them all Godspeed.

 

[Rachel Riggs]

Rachel, I have traveled cross-country twice to see Dr. Montoya's PA, Jane. I have been taking antivirals and LDN as well. I had one brief 3-month window of some improvement on acyclovir (no LDN) when I first started treatment there. On my second visit, after trying valcyclovir, I inquired about being tested at Igenex Labs in CA for Lyme. Jane pooh-poohed that saying that all of their tests come back positive. According to the Lyme sites, most other tests come back negative. What's a patient to do??? So, I left with my script for valgancyclovir and LDN, which has only helped me maintain, not improve. I am wondering if I should totally exhaust my finances and what little energy I have for another appointment. My local PCP has agreed to try me on the first antiviral again to see if it will work again. (Im)patiently waiting....waiting...waiting for some kind of research results from Montoya...or Dr. Ron Davis' team at Open Medicine Foundation. Right now...my money is on OMF. They are independently funded and have some high-caliber intellects working on this. I will always love Dr. Montoya. Through his youtube video, he gave me my first real hope for treatment. I wish them all Godspeed.

I understand your frustration and the need to be judicious with finances. I feel the same way you do - my money is on Dr. Davis + Dr. Naviaux. Two ginormous brains, with a lot of skin in the game!

I have also added Dr. Neil Nathan to the mix. His approach is to identify whatever causative factors he can, such as microtoxins (RealTime Labs) and Lyme (IGeneX) . I show sky high levels of Gliotoxin. What does it all mean, how and when did this expose occur -- who freaking knows!

Like you, I am just trying to hang in there! xx

 

[Seven]

One thing we learnt from PACE is that it is possible to fast track a paper ) they did it in one month) how can we do that with the physiological papers coming down the pipe???! This is very important for the community to attract more money and drug development / trial tests.

 

[Cort]

One thing we learnt from PACE is that it is possible to fast track a paper ) they did it in one month) how can we do that with the physiological papers coming down the pipe???! This is very important for the community to attract more money and drug development / trial tests.

I don't know but its frustrating to have studies drag on and on and on. It's not just the Stanford group - it happens with other groups as well. On the other hand the Zinn's were able to pretty quickly do a brand new study and get it published and several more are on the way. I don't know what their secret is..

I think it does show, though, how important it is to have centers that are devoted to ME/CFS and that have doctors seeing patients and researchers doing research so that each can focus on one thing or at most two things. As I noted Dr. Montoya is the Director of two efforts and is seeing patients (at least some of them)....and has his patients involved in several outside studies. That's a lot of stuff - we need the money for independent, large ME/CFS (and FM) centers. That's one way to increase efficiency and speed.

 

[ClaireKnowles]

I was a patient at Stanford but had to move on to OMI. Stanford just doesn't seem to be progressing with the state of the neuroimmune science elsewhere. The clinic focuses solely on viruses, antivirals, and a few anti-inflammatories. I tried to participate in the Lyme study, but they are not accepting people on antivirals (basically the entire Stanford neuroimmune population... going to be hard to recruit people).

 

[Rachel Riggs]

@ClaireKnowles Would you be willing to share the details? Who are you seeing at OMI, what are they doing differently, and how have you responded to treatment? Thank you!!

 

[ClaireKnowles]

Hi @Rachel Riggs, firstly, I'm happy Stanford exists and that they do what they do. But infectious diseases are just part of the underlying immune dysfunction and neuroimmune-specific infectious profile. Stanford was the first to find elevated antibody titers to most of the herpes viruses, but my Lyme test was negative. They put me on Valtrex, then Famvir. I got a bit better initially, then started to decline. Jane and Amity suggested Plaquenil (which I didn't take due to the long half life), then LDN, which aggravated my psych symptoms badly. But, they were only offering antivirals and anti-inflammatories.

So, eight months later, in terrible pain and major decline, I went to OMI, and am now a patient of Dr. Kaufman's. He has been really great, responsive, and thorough. In addition to the typical neuroimmune illness workup that they probably do for everyone (NKC function, arginine vasopressin, methylation mutations, etc.), Dr. Kaufman suspected bartonella, CVID, and EDS/MCAS in my case. He ordered a lot more testing: flea/tick/stealth pathogens from IgeneX and Galaxy, which revealed evidence of tick and flea borne illnesses; refined immune testing, revealing low IgG subclasses; MCAS markers; hormone levels; SIBO; AChR antibodies, etc.). In my particular case, he started with foundational treatments, first H1/H2 blockers, and mast cell stabilizers, so that I could tolerate other treatments. I moved on to treat SIBO (felt better but still have SIBO), and hormone deficiencies. From there, I will be treating the CVID, the tick/flea/stealth infections and then possibly CMV and EBV with Valcyte (since 3 g of Famvir per day is not doing much except to mostly suppress HS1 breakouts).

None of this would have been known if I hadn't gone to OMI. I spent two years and $10k at UCDMC in the various specialty clinics, where no one person knew what to look for or how to help. It takes someone good, with a holistic approach, to put it all together.

Hope this helps you on your healing journey!!

Claire

 

[Scotty81]

Hi @Rachel Riggs, regarding the question of whether you have Lyme or not, I was wondering the same thing for my daughter. One of her docs recommended that she do the Nanotrap Lyme test by Ceres Nanosciences. If you have Lyme, then this test is supposed to detect the bacterial antigen vs. other indirect methods. I don't know about the false negative rate however. As far as I know this test was first commercially available in October, 2015, and it is $400. That might be a good next step before undertaking any Lyme protocol. My daughter's results were negative by the way, so we're assuming that she does not have Lyme. If you're interested, the website is: http://www.ceresnano.com/nanotrap-lyme-test

As far as gliotoxins go, I know (just a little) about that too. My daughter tested positive for that although her levels were not skyhigh as you indicated yours were. Her doctor theorizes that she might have been exposed to mold at some point in the past, and that is the source of the gliotoxins. It's possible that she has one of the HLA blood types in which her body doesn't recognize gliotoxins as a toxin and therefore never even tries to get rid of that stuff. Of course, that theory relies on the HLA theory of Dr. Ritchie Shoemaker, which I know is controversial. One other potential source of gliotoxins could be Candida (in the GI tract). I've seen some reports that say Candida and other fungi can produce toxins, including gliotoxins, so the source of the gliotoxins may not be environmental after all. I've heard of other research (but never saw) that says they didn't find evidence of Candida producing gliotoxins, but I don't know what the preponderance of evidence shows. Since my daughter also has tested highly positive for Candida, I'm going to go with the assumption that her gliotoxins were produced via Candida. If she is successfully able to eradicate the Candida, and she also eliminates the gliotoxins, then I would suspect it was the Candida after all. But, it's way too soon to say, let alone seeing if she actually feels better after treatment. If you ever find anything more about gliotoxins and whether you feel better by eliminating them, please let me know.

Thanks,
Scotty81

 

[Scotty81]

Hi @ClaireKnowles, since you posted that you have some MCAS markers and AChR antibodies, had you ever been evaluated for dysautonomia via a tilt table test? It can diagnose various forms of dysautonomia. One of the forms is Autoimmune Autonomic Ganglionopathy that I believe is sometimes associated with abnormal values of the AChR antibodies. My daughter has dysautonomia although she does not have this particular form. My daughter also had a skin biopsy to rule out "small fiber neuropathy". There has also been research by others that focus on this trifecta of disorders (Dysautonomia, EDS and MCAS). May I ask what evidence of "flea and tick borne" diseases you were tested for? Also, have any of the particular treatments you're on helped?

Thanks,
Scotty81

 

[Cort]

Hi @Rachel Riggs, firstly, I'm happy Stanford exists and that they do what they do. But infectious diseases are just part of the underlying immune dysfunction and neuroimmune-specific infectious profile. Stanford was the first to find elevated antibody titers to most of the herpes viruses, but my Lyme test was negative. They put me on Valtrex, then Famvir. I got a bit better initially, then started to decline. Jane and Amity suggested Plaquenil (which I didn't take due to the long half life), then LDN, which aggravated my psych symptoms badly. But, they were only offering antivirals and anti-inflammatories.

So, eight months later, in terrible pain and major decline, I went to OMI, and am now a patient of Dr. Kaufman's. He has been really great, responsive, and thorough. In addition to the typical neuroimmune illness workup that they probably do for everyone (NKC function, arginine vasopressin, methylation mutations, etc.), Dr. Kaufman suspected bartonella, CVID, and EDS/MCAS in my case. He ordered a lot more testing: flea/tick/stealth pathogens from IgeneX and Galaxy, which revealed evidence of tick and flea borne illnesses; refined immune testing, revealing low IgG subclasses; MCAS markers; hormone levels; SIBO; AChR antibodies, etc.). In my particular case, he started with foundational treatments, first H1/H2 blockers, and mast cell stabilizers, so that I could tolerate other treatments. I moved on to treat SIBO (felt better but still have SIBO), and hormone deficiencies. From there, I will be treating the CVID, the tick/flea/stealth infections and then possibly CMV and EBV with Valcyte (since 3 g of Famvir per day is not doing much except to mostly suppress HS1 breakouts).

None of this would have been known if I hadn't gone to OMI. I spent two years and $10k at UCDMC in the various specialty clinics, where no one person knew what to look for or how to help. It takes someone good, with a holistic approach, to put it all together.

Hope this helps you on your healing journey!!

Claire

Very impressive workup Claire! Dr. Kaufman sounds really thorough - which I've heard before actually. He was an HIV specialist before he took on ME/CFS. He sounds like he really knows his stuff. How long have you been seeing him now?

 

[Rachel Riggs]

Hi @Rachel Riggs, firstly, I'm happy Stanford exists and that they do what they do. But infectious diseases are just part of the underlying immune dysfunction and neuroimmune-specific infectious profile. Stanford was the first to find elevated antibody titers to most of the herpes viruses, but my Lyme test was negative. They put me on Valtrex, then Famvir. I got a bit better initially, then started to decline. Jane and Amity suggested Plaquenil (which I didn't take due to the long half life), then LDN, which aggravated my psych symptoms badly. But, they were only offering antivirals and anti-inflammatories.

So, eight months later, in terrible pain and major decline, I went to OMI, and am now a patient of Dr. Kaufman's. He has been really great, responsive, and thorough. In addition to the typical neuroimmune illness workup that they probably do for everyone (NKC function, arginine vasopressin, methylation mutations, etc.), Dr. Kaufman suspected bartonella, CVID, and EDS/MCAS in my case. He ordered a lot more testing: flea/tick/stealth pathogens from IgeneX and Galaxy, which revealed evidence of tick and flea borne illnesses; refined immune testing, revealing low IgG subclasses; MCAS markers; hormone levels; SIBO; AChR antibodies, etc.). In my particular case, he started with foundational treatments, first H1/H2 blockers, and mast cell stabilizers, so that I could tolerate other treatments. I moved on to treat SIBO (felt better but still have SIBO), and hormone deficiencies. From there, I will be treating the CVID, the tick/flea/stealth infections and then possibly CMV and EBV with Valcyte (since 3 g of Famvir per day is not doing much except to mostly suppress HS1 breakouts).

None of this would have been known if I hadn't gone to OMI. I spent two years and $10k at UCDMC in the various specialty clinics, where no one person knew what to look for or how to help. It takes someone good, with a holistic approach, to put it all together.

Hope this helps you on your healing journey!!

Claire

Thank you so much Claire, for so much great info, and for being so specific!!!

 

[Rachel Riggs]

Hi @Rachel Riggs, regarding the question of whether you have Lyme or not, I was wondering the same thing for my daughter. One of her docs recommended that she do the Nanotrap Lyme test by Ceres Nanosciences. If you have Lyme, then this test is supposed to detect the bacterial antigen vs. other indirect methods. I don't know about the false negative rate however. As far as I know this test was first commercially available in October, 2015, and it is $400. That might be a good next step before undertaking any Lyme protocol. My daughter's results were negative by the way, so we're assuming that she does not have Lyme. If you're interested, the website is: http://www.ceresnano.com/nanotrap-lyme-test

As far as gliotoxins go, I know (just a little) about that too. My daughter tested positive for that although her levels were not skyhigh as you indicated yours were. Her doctor theorizes that she might have been exposed to mold at some point in the past, and that is the source of the gliotoxins. It's possible that she has one of the HLA blood types in which her body doesn't recognize gliotoxins as a toxin and therefore never even tries to get rid of that stuff. Of course, that theory relies on the HLA theory of Dr. Ritchie Shoemaker, which I know is controversial. One other potential source of gliotoxins could be Candida (in the GI tract). I've seen some reports that say Candida and other fungi can produce toxins, including gliotoxins, so the source of the gliotoxins may not be environmental after all. I've heard of other research (but never saw) that says they didn't find evidence of Candida producing gliotoxins, but I don't know what the preponderance of evidence shows. Since my daughter also has tested highly positive for Candida, I'm going to go with the assumption that her gliotoxins were produced via Candida. If she is successfully able to eradicate the Candida, and she also eliminates the gliotoxins, then I would suspect it was the Candida after all. But, it's way too soon to say, let alone seeing if she actually feels better after treatment. If you ever find anything more about gliotoxins and whether you feel better by eliminating them, please let me know.

Thanks,
Scotty81

Thank you!!

 

[weyland]

AChR antibodies

By this do you mean ganglionic AChR antibodies?

 

[Carolineelizabeth]

Sorry for the length here – but I just started seeing Dr. Montoya after spending the last 5 years doing very exhaustive treatment for various tick-borne illnesses (Lyme, Babesia, Bartonella, Mycoplasma, Rickettsia, etc.). I was like many patients and grew frustrated with the CFS diagnosis from my GP and jumped fully onto the Lyme bandwagon, only to find this diagnosis is just as fraught with conflict as ME/CFS, if not more. I am seronegative with practically every pathogen, including the viruses, so my ND has been treating me primarily based on clinical symptoms (but as a field ecologist I’ve been bitten numerous times so had high risk factors). Although I’ve seen some gains over the years (especially after the rounds of ceftriaxone), these gains did not last and overall my health has declined to the point where I am now on disability and am mostly housebound. I felt it was time to address the viral piece and am now under Dr. Montoya’s care (my troubles began when I got mononucleosis at age 30 - I'm now 48).

It’s too early to say where this is going as I only just had my first consult with him and am starting with Famvir (not appreciating the side effects – anyone else have trouble with this drug?). No LDN, but I’ve taken it in the past. But at this point in my illness I’m mostly interested in treatments that actually help, not the ones that should in theory help (I put most of what is on offer for chronic Lyme treatment in this category - that has been my experience). I appreciated that Dr. Montoya did not send me down more rabbit holes (I’ve been down many) and is keeping the focus on the viruses. Interestingly, he said that a high HHV6 (and other viral) IgG antibody titer is not necessary to see gains antiviral treatment (as the Watt et al. 2012 paper intimated). So in essence he is treating me entirely based on clinical symptoms at this point. He said he likes to start with the drugs that insurance will readily cover to see if they work before bringing out the expensive ones that we have to cover out of pocket. I appreciated that after the tens of thousands of dollars I’ve spent on Lyme treatment.

Take home messages from my consult with Dr. Montoya: the antivirals simply will not work unless patients pull back (i.e. pacing) and avoid PEM as much as possible. I’ve never had a doctor say this to me. Each PEM episode makes us get worse and worse. He said PEM is caused not only by physical activity, but mental and emotional - we need to take all into account. But he was also very clear in saying that pacing alone will not get us better. He said the biggest mistake people make is jumping back into their lives when they start feeling a little better. He said I must resist this temptation (!). I am looking at 3-5 years of viral suppression treatment. He says the symptoms of ME/CFS are largely driven by chronic, unremitting inflammation. He also reminded me of the importance of keeping up with routine health care – which I find so hard given all the doctor’s appointments and poking and prodding. This really helped me reframe my approach and I am now accepting that I am a very ill person and need to start acting like one. Nothing terribly new here, but it's just what I needed to hear.

Interestingly, Dr. Montoya asked if I wanted a Lyme test – but I declined because I’ve had several at this point (all negative). So I did not get the sense that he is dismissive of Lyme. He did ask me to stop taking antibiotics, which I did a year ago. He ordered PCR tests for the viruses from Focus Diagnositics. He did not order any other tests at this time. For the past few years people have been saying they were misdiagnosed with CFS before getting a Lyme diagnosis. I predict we are going to see the tables turned - with people being misdiagnosed with Lyme when its the viruses that are creating the havoc. Or both. Either way is not good - we need better diagnostic tests (and treatment protocols!) all around.

 

[Rachel Riggs]

@Carolineelizabeth

Interesting!! I'm curious -- how did you get in to see Dr. Montoya? I was scheduled last January to meet with his PA as he was not taking on new patients at that time - I wonder if he has now opened up his schedule...

 

[Carolineelizabeth]

@Carolineelizabeth

Interesting!! I'm curious -- how did you get in to see Dr. Montoya? I was scheduled last January to meet with his PA as he was not taking on new patients at that time - I wonder if he has now opened up his schedule...

Hi Rachel! It takes persistence. I have found that doctors like Montoya variously go between not taking new patients and then they are seemingly take on new patients. I've been at this for a while and have the added bonus of living nearby in the North Bay and had really good care with my ND and other specialists while I was waiting. So my advice is to keep calling and hopefully the waitlist will re-open and you can at least get started on a protocol with one of his PAs. Good luck to you!

 

[Rachel Riggs]

Good to know - thanks! @Carolineelizabeth

 

[ClaireKnowles]

Very impressive workup Claire! Dr. Kaufman sounds really thorough - which I've heard before actually. He was an HIV specialist before he took on ME/CFS. He sounds like he really knows his stuff. How long have you been seeing him now?

Hi Cort, I've been seeing Dr. Kaufman for 8 months now. I'm having a wonderful (although we all know, probably temporary) month long remission of most symptoms since my last visit with him in June using 3g Famvir, 200 mg Celebrex, herbal antibiotics for the SIBO, t3/t4, dexamethasone, h1/h2 blockers, ketotifen, supplements (many), and a Cefaly device for migraines/trigemiinal/fibro pain. I am supposed to start IgG and Valcyte for many reactivated herpes types and/or antibiotics for bartonella in September.

By contrast, Stanford had me only on 1 g Famvir and they did not want to prescribe Celebrex despite my request (they gave me LDN, but I'm COMT++ and MAO+/- and it aggravated psych symptoms... they also use Colchicine but Jane did not suggest that one for me for some reason).

I've been sick for almost 5 years, but Kaufman thinks I have had CVID my whole life, and I agree. I had my first bout of ME in 2001 after influenza A followed by aseptic meningitis (recovered fully in a year and exercised for 10 years before experiencing more severe and persistent ME in early 2012, following a viral infection and temporary paralysis... both times, Kaufman thought EBV, and, in the most recent episode, other infectious agents, reactivated).