when Dr. Chia looked in my throat' he said he saw enterovirus infection spots. Now,.... a lot of doctors have looked in my throat and saw nothing. But I think they were all looking for white patches that looked like strep throat bacterial infections. He took a picture and showed it to me.
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Early response to equilibrant
- Thread starter .jm.
- Start date
Hip
Senior Member
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- 17,874
Are you saying that you have difficulty swallowing food or drinks?
This article says:
And this article says:
Hip
Senior Member
- Messages
- 17,874
If your throat symptoms are due to the throat muscles becoming tense, I am not sure what you can do. When I first developed generalized anxiety disorder, for several years the muscles in my entire body became tense and stiff (hypertonia), but I never found any good treatment for this.
thanks for your efforts hip, I'm not sure if you saw this....
FROM: Linda Tannenbaum
CEO/President
linda@omf.ngo
ME/CFS COLLABORATIVE RESEARCH CENTER AT STANFORD
OMF is continuing to fund the ME/CFS Collaborative Research Center at Stanford. These are the projects currently underway:
• T cells and immunology
Michael Sikora, in collaboration with Mark Davis, PhD, Lars Steinmetz, PhD, and Ron Davis, PhD, at Stanford University, will examine the role of T cells and immune-related genes in ME/CFS. This may help address the outstanding question of whether ME/CFS is an autoimmune or infectious disease, or simply an activation of the immune system. Click here to read more about the plans for this study.
• Extended big data study in families
Fereshteh Kenari Jahaniani, PhD, in collaboration with Mike Snyder, PhD, and Ron Davis, PhD, of Stanford University, are generating multiple large datasets (genomics, gene expression, metabolomics, proteomics, and cytokines) in a cohort of patients and their families. By comparing patients to healthy blood relatives, we are more likely to understand what genes cause or contribute to the development of ME/CFS. This data will also be integrated with the Severely ill Patients (Big Data) Study (SIPS), providing important validation and extension of those findings. Read and watch more about the multi-omics approach.
• Diagnostic and drug-screening technology development
Four technologies are being developed that could provide a biomarker for ME/CFS. Dr. Davis’s team is dedicated to developing these into inexpensive tests that can be easily used in a doctor’s office. In the future, all patients will be measured on all of these diagnostic platforms, enabling us to compare their efficacy and determine what combination of them will be most useful to export for diagnostic testing. Click here to read more about the plans for this study.
1. Nanoneedle: Rahim Esfandyarpour, PhD, in collaboration with Ron Davis, PhD, is validating and further developing the nanoneedle biosensor platform, which has shown promise as a blood-based diagnostic for ME/CFS. This is a nanofabricated device that measures electrical impedence from a drop of blood. Thus far, this test is able to distinguish ME/CFS patients from healthy controls. The technology will be optimized for easy clinical adoption and scaled up so that numerous FDA-approved drugs can be simultaneously screened as potential treatments. Click here to read more about why a blood-based diagnostic could be a game-changer.
2. Magnetic Levitation Device: Gozde Durmus, PhD, in collaboration with Ron Davis, PhD, has been developing a magnetic levitation device. This device uses a ferrofluid in a glass capillary surrounded by permanent magnets. This generates a density gradient and cells move to their respective densities in the capillary. Their position is imaged by a camera from a smart phone. It was discovered that white blood cells from ME/CFS patients are less dense than healthy controls. One patient was followed for several months, consistently showing a light density. It was further observed that there was a correlation between the lightness of the cells and the severity of symptoms. This could be a very inexpensive diagnostic test, and more patients will be tested in 2018.
3. Red Blood Cell Deformability Test: Mohsen Nemat-Gorgani, PhD, of Stanford University, and Anand Ramasubramanian, PhD, of San Jose State University, in collaboration with Ron Davis, PhD, are developing a micro-fluidic device that measures blood flow and deformability of red blood cells. In preliminary results, the red blood cells of ME/CFS patients and healthy controls differ in their time of entry into a capillary, rate of movement through the capillary, and the extent of deformation of the cell in the capillary. This has the potential to be yet another biomarker that would only require a drop of blood. (More)
4. Mitochondrial Function Test: Julie Wilhelmy, in Dr. Davis’s lab, has developed a protocol using the Seahorse instrument that measures mitochondrial function. This protocol reveals a significant difference between activated T-cells of ME/CFS patients and healthy controls. The instrument is commercially available, which will allow other laboratories to easily reproduce our results.
• Metabolic Trap
Dr. Robert Phair, PhD, of Integrated Bioinformatics, Inc, has been working with Dr. Davis’s team at Stanford. He has found a metabolic pathway in ME/CFS patients that he hypothesizes to be stuck in a “trap” in an unhealthy state. His metabolic trap hypothesis emerged from genetic and metabolomics data from the Severely ill Patients Study (SIPS) combined with published enzymatic kinetics using mechanistic computational modeling. Dr. Phair and the team are eager to test this hypothesis as fast as possible, as it could be the underlying cause of ME/CFS and lead to effective treatment. (More) Read Health Rising's article about the Metabolic Trap
FROM: Linda Tannenbaum
CEO/President
linda@omf.ngo
ME/CFS COLLABORATIVE RESEARCH CENTER AT STANFORD
OMF is continuing to fund the ME/CFS Collaborative Research Center at Stanford. These are the projects currently underway:
• T cells and immunology
Michael Sikora, in collaboration with Mark Davis, PhD, Lars Steinmetz, PhD, and Ron Davis, PhD, at Stanford University, will examine the role of T cells and immune-related genes in ME/CFS. This may help address the outstanding question of whether ME/CFS is an autoimmune or infectious disease, or simply an activation of the immune system. Click here to read more about the plans for this study.
• Extended big data study in families
Fereshteh Kenari Jahaniani, PhD, in collaboration with Mike Snyder, PhD, and Ron Davis, PhD, of Stanford University, are generating multiple large datasets (genomics, gene expression, metabolomics, proteomics, and cytokines) in a cohort of patients and their families. By comparing patients to healthy blood relatives, we are more likely to understand what genes cause or contribute to the development of ME/CFS. This data will also be integrated with the Severely ill Patients (Big Data) Study (SIPS), providing important validation and extension of those findings. Read and watch more about the multi-omics approach.
• Diagnostic and drug-screening technology development
Four technologies are being developed that could provide a biomarker for ME/CFS. Dr. Davis’s team is dedicated to developing these into inexpensive tests that can be easily used in a doctor’s office. In the future, all patients will be measured on all of these diagnostic platforms, enabling us to compare their efficacy and determine what combination of them will be most useful to export for diagnostic testing. Click here to read more about the plans for this study.
1. Nanoneedle: Rahim Esfandyarpour, PhD, in collaboration with Ron Davis, PhD, is validating and further developing the nanoneedle biosensor platform, which has shown promise as a blood-based diagnostic for ME/CFS. This is a nanofabricated device that measures electrical impedence from a drop of blood. Thus far, this test is able to distinguish ME/CFS patients from healthy controls. The technology will be optimized for easy clinical adoption and scaled up so that numerous FDA-approved drugs can be simultaneously screened as potential treatments. Click here to read more about why a blood-based diagnostic could be a game-changer.
2. Magnetic Levitation Device: Gozde Durmus, PhD, in collaboration with Ron Davis, PhD, has been developing a magnetic levitation device. This device uses a ferrofluid in a glass capillary surrounded by permanent magnets. This generates a density gradient and cells move to their respective densities in the capillary. Their position is imaged by a camera from a smart phone. It was discovered that white blood cells from ME/CFS patients are less dense than healthy controls. One patient was followed for several months, consistently showing a light density. It was further observed that there was a correlation between the lightness of the cells and the severity of symptoms. This could be a very inexpensive diagnostic test, and more patients will be tested in 2018.
3. Red Blood Cell Deformability Test: Mohsen Nemat-Gorgani, PhD, of Stanford University, and Anand Ramasubramanian, PhD, of San Jose State University, in collaboration with Ron Davis, PhD, are developing a micro-fluidic device that measures blood flow and deformability of red blood cells. In preliminary results, the red blood cells of ME/CFS patients and healthy controls differ in their time of entry into a capillary, rate of movement through the capillary, and the extent of deformation of the cell in the capillary. This has the potential to be yet another biomarker that would only require a drop of blood. (More)
4. Mitochondrial Function Test: Julie Wilhelmy, in Dr. Davis’s lab, has developed a protocol using the Seahorse instrument that measures mitochondrial function. This protocol reveals a significant difference between activated T-cells of ME/CFS patients and healthy controls. The instrument is commercially available, which will allow other laboratories to easily reproduce our results.
• Metabolic Trap
Dr. Robert Phair, PhD, of Integrated Bioinformatics, Inc, has been working with Dr. Davis’s team at Stanford. He has found a metabolic pathway in ME/CFS patients that he hypothesizes to be stuck in a “trap” in an unhealthy state. His metabolic trap hypothesis emerged from genetic and metabolomics data from the Severely ill Patients Study (SIPS) combined with published enzymatic kinetics using mechanistic computational modeling. Dr. Phair and the team are eager to test this hypothesis as fast as possible, as it could be the underlying cause of ME/CFS and lead to effective treatment. (More) Read Health Rising's article about the Metabolic Trap
Hip
Senior Member
- Messages
- 17,874
Yes I saw that OMF stuff on another thread, thanks.
I am not sure if you are directing this towards me. I ended up with a sore throat which was the trigger for the cascading ME. ENT doctors (2) stated that the tonsils were inflammed but no pathogen was detected according to their testing but that was likely limited to things like strep etc. Comprehensive cultures could not be taken unless the tonsils were removed which I declined.
The origin of the infection lied in the gastrointestinal tract, my understanding is the tonsils are part of the lymphoid system meaning that the infection may not be localized in the tonsil area but rather the tonsils become inflammed due to systemic infection rather than local.
I treated the ME as an infective problem addressing with natural antimicrobials and supportive nutrients and other modalites.
Hip
Senior Member
- Messages
- 17,874
To address ME/CFS as an infectious issue, ME/CFS specialists will normally test you for the infections linked to ME/CFS — mainly coxsackievirus B, echovirus, EBV, HHV-6, cytomegalovirus, parvovirus B19 and Chlamydia pneumoniae — and then depending on which infections you have, treat accordingly.
Generally speaking, natural supplements are not effective for treating these infections, with the exception of immunomodulators like oxymatrine.
Yesterday, I had a horrible night of insomnia. Sore throat got a lot worse. Feel crappy. nose might have started running. No fever. I hope this is the sickness that proceeds recovery.
I'm still on a total of 4 pills per day, which is Dr. China's current instruction. Should I go to 6 like it says on the package?
I'm still on a total of 4 pills per day, which is Dr. China's current instruction. Should I go to 6 like it says on the package?
Hip
Senior Member
- Messages
- 17,874
Hard to say, but if this is the worsening that precedes recovery, then your current dosage would seem adequate.
So one of the other things going on with the worse insomnia right now is that my resting heart rate in bed is somewhat high. Generally between 75-90bpm. Averaging around 80.
When I was a high performing athlete two years ago, something around 50 would be more normal at night.
I consume no caffeine. Is equilibrant a stimulant? Dr. Chia did say something about when you start it, take single doses in the morning.
ALso, I'll post some pictures of my poop before and after equilibrant+probiotics. It is quite a change - and hopefully indicates something is happening.
When I was a high performing athlete two years ago, something around 50 would be more normal at night.
I consume no caffeine. Is equilibrant a stimulant? Dr. Chia did say something about when you start it, take single doses in the morning.
ALso, I'll post some pictures of my poop before and after equilibrant+probiotics. It is quite a change - and hopefully indicates something is happening.
It is the licorice that is likely the culprit (raising bp and causing insomnia). My guess is the infection is GI related, there can a number of different organisms that can reside there including rogue bacteria, protozoa parasites, yeast/fungal, viral and other parasites (non-protozoa).
You can see how low my resting HR was when I was in shape before this disease. Then it just drifts up and up and up.
(the HR monitor on my Garmin forerunner 235 is a POS. So I don't trust it at all. Though it does show a relatively consistent trend that is interesting.)
(the HR monitor on my Garmin forerunner 235 is a POS. So I don't trust it at all. Though it does show a relatively consistent trend that is interesting.)
Attachments
I'm now on day number 9 of this 'flu-like illness' which isn't the flu. In fact, It is missing most of the characteristic flu symptoms. Symptoms are:
- First symptoms to appear were terrible insomnia at Wednesday night (may 31st) and a really bad sore throat. Insomnia was so bad, Ambien didn't knock me out. Heart rate kept climbing from 70 to 80 to 90 in bed overnight.
- Bad general fatigue. I feel really crappy.
- Coughing, but not coughing up anything interesting - (not like coughing up mucus from a running nose)
- gunk coming out of my eye tear ducts. So much overnight that it covers my eyes in bed (this has decreased by day 9, but is still a present symptom.) Yet, I don't have inflamed red eyes like pinkeye.
- painful sinus pressure.
- Each side of my nose clogged in different periods of times, but not very much snot comes out. And my nose isn't really running much.
- No fever.
- clogged eustachian tubes for about a week.
- Poor appetite despite being generally hungry.
Updates, Updates. First of all, I saw Dr. CHia again for appointment #2 at about 4 months after the first appointment. more on that later. I am also seeing Stanford CFS clinic in about three weeks.
the non-flu flu-like illness lasted pretty bad for about two weeks, continued in various forms for another 2-4 weeks. and at almost 2 months later seems like it was in the past. WHat is very interesting is that in the aftermath of this non-flu flu-like illness I have managed to get off of Ambien and generally sleep at night. I still wake up during the night but I sleep much better than I have in a while (and without ambien!). which seems like a huge improvement to me. I have managed to get off of ambien for short periods of time before, but this seems better than those periods. It has been at least 2 weeks without ambien. I just went all the way to california and came all the way back without ambien (except for the flight, but that is a permitted exception in my book). Only time will tell if it holds. I do take 25mg of seroquel for sleep, but I hope to titrate off of that shortly.
My poop looks bad again (usually soft and mushy, frequent diarrhea). I suspect there is still something everyone is missing, but one thing at a time.
Dr. Chia increased my Equilibrant to 3x2 day (6 total/day) He also gave me instructions to take inosine and possibly eventually start LDN (which was previously prescribed, but I hadn't started) I'll see him again in 4 months.
the non-flu flu-like illness lasted pretty bad for about two weeks, continued in various forms for another 2-4 weeks. and at almost 2 months later seems like it was in the past. WHat is very interesting is that in the aftermath of this non-flu flu-like illness I have managed to get off of Ambien and generally sleep at night. I still wake up during the night but I sleep much better than I have in a while (and without ambien!). which seems like a huge improvement to me. I have managed to get off of ambien for short periods of time before, but this seems better than those periods. It has been at least 2 weeks without ambien. I just went all the way to california and came all the way back without ambien (except for the flight, but that is a permitted exception in my book). Only time will tell if it holds. I do take 25mg of seroquel for sleep, but I hope to titrate off of that shortly.
My poop looks bad again (usually soft and mushy, frequent diarrhea). I suspect there is still something everyone is missing, but one thing at a time.
Dr. Chia increased my Equilibrant to 3x2 day (6 total/day) He also gave me instructions to take inosine and possibly eventually start LDN (which was previously prescribed, but I hadn't started) I'll see him again in 4 months.
Jennifer J
Senior Member
- Messages
- 997
- Location
- Southern California
Hi, @.jm. Was wondering how your equilibrant journey is going and things added to it?
And very curious about the specific instructions Dr. Chia gave you (and anyone else on the forum, please) for taking inosine and LDN (with equilibrant).
Also if adjustments ought to be done with your equilibrant when doing so.
One poster (who is the only one I've found so far that shared more details about dosing) wrote that he had her decrease her equilibrant dose when she added inosine. Curious if this is standard how it's done.
I know it may vary for each of us and was medical advice given to you for your specifics.
Thank you for any help. I hope you're doing better from it.. Here's to some improvements.
Gingergrrl
Senior Member
- Messages
- 16,171
I have no advice but it is GREAT to see you @Jennifer J and I think of you often. I am hoping that you are having improvements from Equilibriant and want to wish you the best in the new year 
frozenborderline
Senior Member
- Messages
- 4,405
Is the danger to doing oxymatrine if you haven’t had a full workup for autoimmunity overstated? If anything I think I may have Hashimoto but not other autoimmune diseases