As Health Rising continues its series of recovery/recovering stories, their sheer diversity continues to surprise. We’ve had simple cures (Lucie’s hydration cure), spontaneous, unexpected cures (Rachel’s JEV vaccine cure), complex, multifaceted “cures” (James CIRS, Jason’s H202+ cure), and a drug cure (Jeremy’s Rapamycin cure).
- Can the Japanese Encephalitis Vaccine Reduce Symptoms of Long COVID?
- Lucie’s Surprisingly Simple Chronic Fatigue Syndrome (ME/CFS) Recovery Story
- Up from the Ashes: James’s Severe ME/CFS Recovery/Recovering Story – CIRS-based treatment approach
- A Rapamycin Resurgence: An MD Moves the Needle on his ME/CFS – Rapamycin
- Jason’s Eclectic Mix of Treatments Returns Him to Near Normal Health After 16 Years with ME/CFS
Interestingly, except for James’ CIRS treatments, every recovery/recovering story has come through the patient’s own efforts – not through a doctor’s treatment program. Adam’s story highlights that theme in spades.
Using his past temporary successes as a guide, Adam researched his condition, came up with a possible candidate – in this case, a novel candidate (the BCG vaccine) – and gave it a try. Like some others in our series, he went out on the skinny branches a bit – using the BCG vaccine in a way it wasn’t intended to be used. Like some others who had to navigate the medical system while not engaging in standard practices, it took some real work. In the end, though, he was successful.
First, a look at vaccines and what they do, then some background on the vaccine Adam used, and then onto his story.
Please note that Health Rising does not provide medical advice or promote treatments – it is an information resource only.
The vaccine situation in chronic fatigue syndrome (ME/CFS) and long COVID is fascinating. Since they were first developed in the 1720s, vaccines, have, of course, saved hundreds of millions of people from coming down with serious infectious diseases. Adverse reactions to vaccines have, however, produced relapses in some people with ME/CFS or long COVID or have even triggered these diseases. Paradoxically, they have also at times improved the symptoms of people with ME/CFS/long COVID, or even helped some people recover.
A vaccine typically contains an agent that resembles a pathogen. Once introduced into the body, it stimulates the body’s immune system to quickly recognize the pathogen and destroy it. The vaccine – which often consists of a killed or weakened form of the pathogen, a toxin it produced, or one of its surface proteins – prepares the body to attack the pathogen.
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Doing so, however, triggers an immune response that is often not pleasant and consists of flu-like symptoms, often referred to as “sickness behavior”, that encourage rest and isolation.
Many different kinds of vaccines exist; some contain live, attenuated, or disabled microorganisms, others inactivated microorganisms (“ghosts”) that have been destroyed by chemicals or other means, others are made up of toxins, and mRNA vaccine is composed of RNA from the offending pathogen.
The Bacillus Calmette–Guérin (BCG) Vaccine
The BCG vaccine was developed in the early 1900s by two French doctors, Albert Calmette and Camille Guérin, against tuberculosis and is still used regularly where tuberculosis or leprosy are common threats. This live vaccine consists of a weakened virus called Mycobacterium bovis, which has lost its ability to cause disease in humans. Its efficacy is variable but has been used in dozens of countries across the world (but not the U.S.).
The vaccine’s protective effects vary depending on which genetic strain is used and which lab produces it. The Tokyo strain, for instance, is considered particularly potent, while the Denmark strain is easier to obtain.
The BCG vaccine’s ability to protect against diseases other than tuberculosis has been in evidence for over 90 years. This appears to come from its ability to stimulate the early nonspecific innate immune system. Studies suggest that BCG vaccination is protective against respiratory syncytial virus (RSV) infection, some types of influenza and other respiratory infections, and the human papillomavirus. (Study results with the coronavirus have had mixed results.)
This appears to be due to something called “trained immunity” which occurs when innate immune cells like monocytes and macrophages develop a “memory” response; i.e. once exposed to a pathogen, they can respond more quickly and powerfully. We recently came across trained immunity in Rachel’s long-COVID JEV vaccine recovery story.
Interestingly, given the recent reports of monocyte/macrophage activity in long COVID and ME/CFS, the vaccine appears to help cytotoxic T-cells kill infected macrophages.
The vaccine appears to enhance pathogen killing via an inflammatory cascade (TNF-α, IL-1β, and IL-6) and may be able the enhance the activity of natural killer cells. The enhanced pro-inflammatory response that results eliminates or reduces the levels of a pathogen, ultimately resulting in reduced inflammation over time.
Given the evidence that the immune system in ME/CFS leans towards a Th2 or allergic-type response, it’s intriguing that this vaccine may also help reduce the risk of eczema and dermatitis in children.
Interestingly, the BCG vaccine may also be helpful in type I diabetes. While the evidence is still out, several studies suggest that its ability to restore immune balance and improve metabolic functioning may be responsible. Besides better-managed diabetes, a study found a major decrease in bladder infections, less flu and fewer colds, and fewer respiratory tract and sinus infections. One researcher reported that the vaccine “seems to be resetting the immune response of the host to be more alert, to be more primed, not as sluggish.”
Animal studies also suggest the vaccine may be helpful in atherosclerosis by impacting the macrophages that attack the blood vessel walls and by reducing cholesterol levels.
Adam’s BCG Vaccination Story
My success with BCG vaccination therapy
I am 46 years old, living and working in Europe. I administer a 0.6 dose of BCG vaccine every 14 days (twice a month). By doing that, I’ve managed to improve my medical condition from not being able to work to now being able to work full-time in a job where attention to detail is crucial. In addition, I’ve gone from not being able to exercise to being able to work out in the gym twice a week and swim once a week. I am still not 100%, but it is manageable.
To understand how I managed to get better, I will tell you my story in a nutshell including my recent treatment schedule.
My CFS started in 2001
In 2001, was the picture of health. In an effort to develop more muscle, I started – following what I read in Arnold Schwarzenegger’s book – eating raw eggs (20-30 per day). In addition, I also took many dietary supplements, many of which were available only in the USA (but banned in the European Union (EU)).
Subsequently, I developed tonsillitis, which turned out to be therapy-resistant. The bacteria in the raw eggs seemed to attack my tonsils and they were resisting antibiotics. Finally, my tonsils have been removed, but persistent drowsiness remained.
Then, I applied for a grant to study law in the USA. I got admitted to the University of Georgia, School of Law, Athens (UGA), and started my graduate legal studies in 2004, and finished in 2006. After a rainy day in 2005, I got a cold in a heavily air-conditioned classroom. My health declined and I developed fatigue and brain fog.
I was able to successfully finish my legal studies with good results, though. I wanted to pursue a Ph.D. in political science and justice at UGA and get a job as a court clerk in DC. I’d received my work permit and was ready to go, but my health continued to get worse. When the medical center at UGA was unable to identify (diagnose) my disease (all of my lab tests were negative) and provide treatment, I had to return home in late 2006.
While in Europe, my medical condition continued slowly deteriorating until 2008, when a medical professional told me that this could be chronic fatigue. She added that there is no approved treatment for CFS but that I should find a clinical trial or a research facility abroad somewhere in the European Union. She referred me to the National Institute of Virology in my home country to see if I have Epstein-Barr virus (EBV) or cytomegalovirus (CMV) reactivation. My results were conflicting.
Next, I started reading medical journals and looking for places where doctors are specialized in CFS and where novel treatments were applied.
2008-2013: Treatments in Brussels: How I temporarily won the war against CFS
I managed to find a clinic in Brussels which was focusing on CFS and which diagnosed me with it. My routine lab tests were normal and no autoimmunity was found, but further testing revealed that I had low NK cell number and function, reactivated EBV (by nested PCR), and highly elevated IL8. Some of my inflammatory markers were also elevated. I was also told that this was not a viral disease, I have some immune deregulation.
I was prescribed the following treatments. As you can see, I responded well to several treatments (Nexavir, Isoprinosine) but developed tolerance to both. GcMAF, however, largely returned me to health.
|Nexavir Sc. 2ml/day + Hydroxocobalamin 10mg IM, twice per week
|Good result: ability to work and perform sport returned.||Patients develop tolerance to Nexavir. I did it after 2 years. In addition, It cost me a fortune Once you develop tolerance, it will not work again. I had to discard a package of unopened Nexavir vials, which cost me several thousand dollars.|
|Isoprinosine 3×2 tablet (immunovir in the USA)
|Good results||I developed tolerance in 3 months. No more clinical benefit.|
|During the long treatment period, fatigue and foggy brain was permanent, but I was able to perform some legal work. After the treatment, CFS disappeared for 2 years! I was at 90%.
My lymphocyte number, NK cell number and function rose to high normal.
|During the treatment:
-drastic weight loss (-7kg, 10 pounds)
-continuing low fever
-my testosterone level increased 3-fold (and who knows what else had happened)
Unexpected side effects by other patients:
-GcMAF caused balding in many female patients, caused premature menopause, and upset hormonal balance.
Vials were unlabeled and the origin was not known. This product derives from human blood and is not licensed anywhere.
|IgG SC, 6ml/week||no result||very expensive|
|LDN (2.5-4.5 mg/day)||no result||Increasing weight loss with increasing dosage|
2013-2015: Living without CFS
I was very fortunate with GcMAF treatment (I was probably the only one in Brussels); CFS had disappeared for 2 years. I was working full-time and actively participated in sports as well. I simply forgot about CFS.
2016 – 2018: CFS returns, and my fight to find new medications reappears
CFS, however, slowly returned without any apparent cause. I was considering obtaining GcMAF again, but my doctor in Brussels told me that it had been banned in Belgium and that many patients had suffered significant side effects with symptom deterioration. Therefore, this therapy was discontinued at the clinic. I decided to look for something else. I tried many treatments, but none of them worked. I again developed low NK cell number and function, elevated IL8, fatigue, and brain fog. I tested EBV and HHV6 negative by nested PCR.
Why I chose the Bacillus Calmette–Guérin (BCG) Vaccine
I concluded from my experiences the following:
- Since I had gone from having no ability to work and perform sport to full ability to do both, I concluded that while ME/CFS is a permanent medical condition, you can significantly improve. Dietary supplements, however, do not work.
- Given my positive experiences with Nexavir, Isoprinosine, and GcMAF, I concluded that immunomodulating substances are crucial. However, they are very expensive, and with my limited ability to work, I needed a cheaper treatment.
- Access to famous doctors and novel treatments was out and even if I had access to them, my chances of recovery were probably low. I also knew my medical test results in detail – more detail than many of the doctors I worked with knew them. I concluded that I was going to have to discover the way out on my own. Consequently, I started again reading medical journals to find my own treatment.
- Based on my experiences and my test results, I needed a substance that improves cellular immunity and decreases inflammation. If I could manage to find that, my ability to work and participate in sports would return.
- I browsed clinical trial results looking for substances that decreased inflammation and IL8 and improved cellular immunity, and found something. This was vaccination therapy. You have to identify a substance where tolerance will not be an issue. Tolerance is the gradual loss of efficacy due to adaptation. No tolerance can be developed regarding BCG. In addition, BCG has been applied in autoimmune medical conditions as well. This means that even if this disease ever turns out to be of autoimmune origin, I would probably not harm myself.
2018: Obtaining BCG is a nightmare but manageable (better than being sick)
Clinical trial results of a vaccine called Staphypan Berna fit my parameters. This was a staphyloccus vaccine administered by a Swedish doctor named Carl Gottfries to his ME/CFS patients. I located this doctor and started corresponding with him.
Carl, who was over 90 in 2018, was an ME/CFS patient himself and used this therapy himself. Sadly, though, Staphypan wasn’t being produced anymore. I tried to find some leftover reserves from the vaccine, but production had been halted in 2004.
I talked to Carl about the possibility to use the Russian version of Staphypan, but Carl said it wasn’t as effective as the Swiss product. (He’d tried it.) After I started searching the medical literature again for a vaccine with the same effect, I focused on vaccines I received when I was a child (because they are accessible) and I found BCG. According to clinical research, BCG may be effective in inflammatory diseases which resemble autoimmunity. That, I thought, is ME/CFS!
This is from a clinical trial paper:
“Several studies have demonstrated that BCG induces TH1/TH17 responses against TB and other unrelated pathogens, its capacity to exert a regulatory effect over autoimmune diseases, such as T1D and MS is very surprising. BCG induces a tolerogenic response via enhancement of glycolysis, contributing to the reduction of inflammation in autoimmune diseases.
Another possible mechanism through which BCG can mediate protection in the context of autoimmune diseases relies on the immune response to the infection with the mycobacterium. After infection, it has been shown that activated, but not naïve, CD4+ T cells undergo apoptosis in an IFN-γ-dependent manner. Thus, apoptosis of activated T cells may have as a consequence the diminution of activated autoreactive cells, improving the health condition of the individual receiving vaccination.”
I also realized that BCG strain also matters.
Then, I contacted Carl again and asked him what he thought about using BCG for ME/CFS. He said it was a good idea and that he, himself, was also considering BCG, but it was difficult to obtain and he was too old to start experimenting with this treatment. I asked him to send me his treatment plan with Staphypan and also asked what he thought about using the same schedule with BCG. He thought it was a good idea. I was happy to identify a possible treatment.
Next, I was in need of the BCG vaccine. I realized that it is very difficult to obtain BCG because it is distributed in hospitals only. (Note that this is different from country to country. Herbert reported in the comments that you can purchase the BCG vaccine in Germany without a prescription). In addition, you will need an off-label permit to buy it. I drafted an off-label petition for myself, citing clinical trial results and I looked for an immunologist to sign off on it. It took me 8 months, but I finally managed to find someone to stamp my petition and I filed it to the National Drug Agency in my home country. It was quickly approved, probably because no financial contribution was asked for.
That done, the next hurdle was obtaining the vaccine. First, I contacted a producer, but they were not very helpful and were afraid of off-label use. I would also have been required to pay a fee (1000,-EUR) just to investigate my request regarding BCG for off-label treatment (for the procedure). Therefore, I turned to another pharmaceutical company that uses the Moreau strain, which is even more active immunologically!
Finally, I realized that I could only obtain it through a wholesaler only. You cannot buy a drug directly from the producer. I found a wholesaler and obtained BCG. It took me 12 months.
- Health Rising’s recent Recovery/Recovering series has had simple cures (Lucie’s hydration cure), spontaneous, unexpected cures (Rachel’s JEV vaccine cure), complex, multifaceted “cures” (James CIRS, Jason’s H202+ cure), and a drug cure (Jeremy’s Rapamycin cure).
- Now comes Adam’s BCG vaccine recovering story – a story that highlights a familiar theme – a person with ME/CFS creates their own pathway to recovery.
- The Bacillus Calmette–Guérin (BCG) vaccine is a century-old tuberculosis vaccine that is still in use in many countries around the world.
- The vaccine has aroused a great deal of interest due to its ability to reduce the risk of falling ill with other respiratory infections. Studies suggest it may also be helpful in type I diabetes and is being used in bladder cancer.
- Interestingly, given the recent reports of monocyte/macrophage dysregulation in long COVID and ME/CFS, the vaccine appears to help cytotoxic T-cells kill infected macrophages. The vaccine appears to enhance pathogen killing, ramping up an inflammatory cascade (TNF-α, IL-1β, and IL-6). It may also be able the enhance the activity of natural killer cells.
- Formerly athletic and abundantly healthy, Adam first developed health issues (drowsiness) in 2001, and then in 2005 while at college in the U.S., he got worse. He finished his college degree, but due to illness, was unable to start the Ph.D. he envisioned and had to leave the U.S. and return to his native Europe.
- With his condition slowly deteriorating, Adam was diagnosed with chronic fatigue syndrome in 2008 and made his way to a clinic in Belgium, where tests indicated that he had immune dysregulation (low NK cell number and function, reactivated EBV, highly elevated IL8).
- He responded well to Nexavir Sc. 2ml/day + Hydroxocobalamin 10mg IM, twice per week and was able to return to work and exercise for the next two years until the treatment stopped working. Isoprinosine worked for three months as well and then stopped working.
- Despite severe early side effects, a blood product called GcMAF 100ng/week returned him to 90% health for two years. His immune results normalized and his testosterone levels increased threefold.
- After 2 years, his health declined and his immune test results cratered. By then, though, GcMAF had been banned in Belgium and was considered unsafe. He tried other treatments including low-dose naltrexone (LDN).
- Based on his past successes, he concluded that immunomodulating substances were crucial for him. His health and financial limitations precluded him, however, from seeing expensive doctors and trying expensive treatments. He struck out on his own in an attempt to find something that would improve his cellular immunity and decrease inflammation.
- After consulting with Carl Gerhard-Gottfries – a Swedish doctor who’d successfully treated his ME/CFS using regular doses of a vaccine (which is no longer being made) – he learned that the BCG may be effective in inflammatory diseases which resemble autoimmunity. That, he thought, is ME/CFS!
- After getting the go-ahead from Gottfries, it took Adam 12 months to get a doctor to sign off on a petition to get the drug and then get a strong strain of the drug in quantity ($1,000 Euros – 36 vials – enough for a year). Over ten weeks, he slowly ramped up the dose (every 14 days) and after 3 months began to slowly improve. Over time, it returned him to 85% of his health, allowing him to work again and engage in some exercise again.
- He says “Never give up!” Be stubborn and keep going.
My results with BCG: full-time work and sport
I followed, at the beginning, the same treatment schedule as Carl:
- Week 1.: 0.1 dose BCG
- Week 2.: 0.2 dose BCG
- Week 3.: 0.3 dose BCG
- Week 10: one full dose BCG, which equals 0.1ml. When you use small doses, you have to dilute it (ask your doctor how to do it – not difficult).
In my experience, it’s better to use it every 10th day. After I had a flare-up after dose 5, I paused it for a month and then continued to use it as planned. After I reached the full dose, I switched to vaccination every 10 days. Next, I decreased somewhat the dosage to avoid flare-ups. In addition, Carl told me to watch the redness of the vaccination site too. “Listen to your body, he wrote.” If the redness is too big, I should decrease (adjust) the dosage. Thus, I went back to 0.6 dosages (0.6 x 0.1mg).
It was a slow process, but my symptoms started to improve after 3 months. I was gradually able to start working out in the gym and then begin swimming. I am now experimenting with running on a treadmill at low speed. Aerobic exercises do not help with CFS. BCG provides for an 85% increase in health, but it is stable. This is not bad at all! In addition, it shows that health can further be improved.
Some BCG-related advice: not all brands are created equal
First, find a helpful medical professional who is willing to file an off-label petition on your behalf and who is assisting (and supervising) you in general. I drafted the petition myself (and collected medical literature) – you can do it. No one helped me (I received a stamp on the petition I drafted), but you may find more helpful doctors. Do not treat yourself!
Next, find a wholesaler trading with BCG vaccine. Compare brands and prices. I pay 1,000 -EUR for 36 vials (good for a year). Another brand may cost significantly more! The Moreau strain is good, but research papers on the efficacy of various strains are conflicting. After opening the vial (which is good for 10 vaccinations), you must discard it. Opened BCG vaccine cannot be stored anymore! BCG has to be stored in the fridge, but it cannot be frozen.
Ask your doctor to show you how to administer it. Intracutaneous administration is not easy but manageable. I watched a UN video with African children getting vaccines on YouTube.
Then, you can manage it weekly or every 10 days. Because it is a small dosage, you have to dilute it at the beginning (0.1 dose of 0.1 ml is very small). It’s not difficult – a doctor can show you at the beginning. Adjust the dose and frequency as needed. Right now, I am using 0.6 doses every 14 days. I do not have to dilute it because this is almost half a vaccine dose. For me, every 10th day (and 0.4 dosages) would be even more effective, but it is not easy to obtain the vaccine and it would create too many wounds on my shoulder.
At the beginning, you may develop fever, weakness, etc. It will disappear. You cannot stop using it; symptoms come back. Your shoulder will be full of scars, but it is better than CFS. Summer helps a lot, sunshine resolves redness. Do not apply antibiotics to the wounds; it will weaken BCG’s effectiveness.
Moderate sunshine helps a lot. It is not about Vitamin D – it helps with reducing inflammation. From April until October, I am often out in our yard and enjoy the sunshine (sunbathing) as long as the UV radiation is not higher than 4. Tanning beds do not work at all. While on GcMAF, I had to be out in the sun for 7 hours a week.
Final thought: Never give up! This disease is manageable.
As you can see, I had a long journey. I am stubborn (I was born in April) and you have to be stubborn too. Never give up, this disease is manageable. As you increase mental and physical activity, do it step by step. Give yourself time to adjust. Sometimes you may think that physical activity will not be tolerated, but that is not the case. Slowly, your capacity to exercise increases.
You may add some other substances too. Low-dose naltrexone (LDN) helps, but it hurts my digestion and l lose weight (and muscle mass). My maximum dosage was 1.5 mg LDN. Do not forget, BCG is immunologically active. If you add something, you may develop side effects.
Finally, doctors may find this treatment not serious enough, but I never cared. I had to contact at least 20 doctors before I was able to identify someone willing to stamp my off-label petition. Of course, risks shall always be balanced against benefits. This is why I dropped the idea of using GcMAF again. At the same time, I do not have 30 years to wait for an approved treatment. Vaccine therapy seemed to me reasonable and it worked.
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Thank you Adam, for sharing your story with us. And thank you, Cort for this other fascinating perspective on treatment.
Hey Adam. Thank you so much for the information. I have had CFS for over 30 years from a severe case of Mono/EBV in college. I’m now 8 months in as Long Covid. I would love to know if you hear of anyone in the US obtaining this. I live in Atlanta, home of the CDC and Emory Hospital (large renowned teaching hospital next door to CDC) and Atlanta doctors still suggesting Cognitive Behavior Therapy and progressing exercise or a psychiatrist! While the US healthcare is not as poor as other countries mentioned in the comments, it is HIGHLY regulated and doctors are afraid of losing their medical licenses for off label prescriptions or being sued. I was able to get low dose Abilify off label (based on Stanford researcher’s use) but the doctor was forced out and Abilify caused big weight gain and what seems to be a permanent altered metabolism. Due to long covid I’m eating 1200 calories or less, sometimes nothing, and haven’t lost a pound. Sorry, I’m oversharing but CFS and LC have left me mostly bedbound/couchbound with double the brain fog. Thank you again for sharing.
Hi Kelly !!
I loved Georgia !!
The biggest issue with US health care is the lack of universal health care. It was surprising to me how people cannot understand it there. When I got cold there, I had to pay 100,-dollars for 5 pills of antibiotics. In my home country it is for free or under 5 dollars. Health care is a rippoff in the US.
Try to find a doctor who is willing to experiment. It wasn’t easy for me either. What about dr. Klimas in Florida ? she is close to you. Never give up. You will need a doctor to consult with and monitor your advances. I have never been bedridden but was hardly able to walk from fatigue….
Thank you so much. I will check out Dr. K in Florida. I don’t have a problem without Universal Healthcare bc our private insurance is really good. Private insurance got worse and more expensive and restricted when Obama passed Obama care. Glad some of it was reversed. I see our biggest problem is doctors not even educated on CFS/ME. NIH just received $170M for Long Covid (60% of LC patients have post viral ME/CFS) research and decided to spend 1st $4M and 2 years on graduated exercise. Makes me want to scream as this has already been proven detrimental. Only helps healthy but deconditioned patients and already have studies proving that. No out-of-the-box thinking or education in medical schools. Very quick to diagnose mental health issues because doctor doesn’t know how to look or think further. Thanks again and congratulations on your breakthrough.
Happy for Adam, but it’s ultimately an exercise in head-desk frustration to read stories like this because 99.99% of ME/CFS patients will never be able to obtain this vaccine.
It’s certainly not easy and I don’t know how you’d do this in the U.S. Adam is also unusually stubborn! If he can do it, though, other people can. Herbert just reported that you can buy it in Germany without a prescription.
The BCG vaccine is safe and has been used for over 100 years. I would hope that some doctors would take a shot at it given Gottfries effective and documented use of vaccines to treat ME/CFS in a similar way over many years.
Beyond that I think Adam’s and Rachel’s stories indicate that immunomodulators can be very helpful and with long COVID there’s a lot more attention on these. Other things are going to pop up!
Nancy, this is not true. You live in the USA, I live in Hungary, in a much poorer country. If this is a frustrating story for you, I fear it will be difficult for you to identify any treatment bc there is no traditional treatment for this disease..
Another note. I made a deep analysis. It is far from being easy in Europe to obtain BCG especially in such a big quantity. In addition, the United Nations also warned that there is scarcity of BCG vaccine and therefor it shall be preserved for the newborn. Anyway, it is still easier to obtain than for instance Ampligen. Easier and cheaper.
Do not make excuses Nancy. I succeeded bc I realized if I cannot make it no one will make it for me.
This is a heck of a story. Wonderful. On another note, are any researchers at all studying this and the other vaccine mentioned? There are dozens of different areas of study going on, it seems like this should be prioritized?
Yes Julie, there is documented evidence that some live vaccines have similar effect line polio. The problem is the newest polio vaccine is different and synthetic. You can do a research with other vaccines too. At the same time, BCG is a century old (we know it) and well documented.
I may also experiment with others later.
This is very very interesting, thank you Adam! One of your comments on health rising a few years ago inspired my own search about this treatment modality (which I summarize here: https://www.kinder-verstehen.de/wp-content/uploads/BCG_hypothesis_short_251222.pdf) – also your help with so many informations have greatly advanced my understanding. Thank you!
A few patients that I know of (myself included) have started BCG and there will be hopefully more and more reports coming in.
A few comments on BCG therapy:
The protocol described here (let´s call it the Adam/Gottfries approach) is unique. Other protocols will use either a one-time full dose (this was done in the MS trials in Italy) or go up to 3 full doses (1st dose, then 2nd dose 4 weeks later, then 3rd dose after another years – as in the Faustman protocol used in the type 1 diabetes trials. Effects (according to these trials and biological considerations) may take a few years (!) to develop – this was the case in the MS trials and this was the case in the T1D trials. This is explained by the fact that immune modulation by BCG relies on epigenetic reprogramming of bone marrow stem cells.
When would effects in ME/CFS show up if a 1 or 3 dose regimen is used? No one knows. We may have some more information in the months to years to come. Could the effects of a 1 or 3 dose regimen be insufficient to make a change in ME/CFS? Possible, so far we do not know, it remains a blackbox.
Some practical comments: in my country BCG can be ordered by any doctor using import pharmacies, no “approval” needed. I do not know how this is in the US.
Strains: they are all safe and immunogenic, for studies of trained immunity effects the Tokyo 172, the “Danish” strain 1331 and also Moreau strain have been used. But no one knows which one is superior.
A caveat: BCG being a life vaccine should not be used in immune compromised patients, and as always: check with your doctor.
And a last comment: to me BCG appears as a powerful and at the same time time-proven, cheap, and surprisingly powerful immunemodulatory therapy. I would be very disappointed if this wasn´t picked up and rigorously studied. It really should. They trialed Rituximab with heavy costs and potentially heavy sideeffects, come-on!
You make the case so well Herbert. Here we have an agent that appears to be safe, is cheaply and widely available – why not try it out in ME/CFS and long COVID?
Thanks for your lengthy explanation. Unfortunately the very short-time frame (and single dose) BCG studies for acute Covid-19 showed BCG had no effect. I actually know one of the doctors who did the South African study https://clinicaltrials.gov/ct2/show/NCT04379336. Do you think it could be meaningful to do a follow-up study for Long-Covid or do you think it’s rather irrelevant as the time-frame and dose were too low and the vaccine was adminstered before possible infection and Long-Covid? Doing follow-up studies for the already done studies would at least be very easy and given that the numbers of people participating are in the thousands it should be statistically meanigful.
I agree Oscar, single dose will probably not make any result. Note that symptoms in CFS are drastic and persisting. Not very realistic to wait from a vaccine to exert any effect from a single vaccination and resolve persisting symptoms.
I hadn’t had any effect for 3 months (and 10 vaccination).
Yes, of course ME/CFS is extremely severe. But Long-Covid also has non severe cases that recover in a short time frame. I was thinking that a follow-up study for Long-Covid would be extremely easy & cheap and could yield some statistical significance (especially in the aforementioned lighter cases) which would motivate further more detailed studies. Note: The BCG vaccine for acute Covid-19 studies already have data for tens of thousands of patients, we could easily use these patients in a first step.
Oscar, what sort of conclusions are you waiting for ? You will find in clinical trials both positive and negative results. In additions, not treatment is similar to that of Carls (with Staphyan). Continuing treatment is unique and this is a problem bc other trials will never be comparable. By the way, Carl shared my view that you cannot cut frequency to less than once a month.
Unfortunately, you have to find out something with a doctor and try it if you do not want to wait for 10-20 more years.
If doctors would be interested in cfs, there is plenty of information about this disease. They could also draw conclusions from cases where recovery was achieved and compare cases where it was not. Similarly, it would be interesting to see why tolerance develops over time with many treatments. Unfortunately, only patients are so deeply interested in it, which is a very perverted situation. I also tried bee venom therapy, very similar to BCG ! I developed allergy to bee venom though.
Adam, you are so right! There is enough information to draw conclusions but the information is diffuse and the individuals who recover are often disbelieved by both the medical profession and fellow sufferers. My 20 year old son recovered from CFS (brought on from EBV) and has been free of its symptoms for 20 months now. He used a cocktail of mitochondrial enhancers along with a stimulant and he got partial results. After his second Pfizer covid vaccination he got flu like symptoms and his first migraine. After recovering he realised he didn’t feel fatigued anymore! We are hopeful he will remain healthy but I continue to engage with this community to encourage others to try everything possible to recover. Thank you for your story.
your son was probably young enough to recover and I am happy for that ! It is a real frustration for a parent too.
The worst moment was when I realized that it can be permanent and and I may even forget how I felt when I was healthy.
Sometimes it is difficult to understand why things occur in life. It was good for one thing for sure: to learn that I do not have an impact over my life. This is a fundamental truth we often forget about. Nothing happens by chance. Before the onset of CFS, I was very successful in everything. Success – ass opposed to what people think and teach – does not have a good impact on your character. In such cases, sometime God intervenes and shows you how pitiful you were….
Thanks Adam. Yes, he was young but I know of many young who go on to be adult sufferers and my research showed there was a narrow window of opportunity to be one of the one’s who didn’t go on to be a lifelong sufferer. So many of our young succumb to CFS and fail to recover! They tend to then become the most severe sufferers. 2 years is what I had to prevent the lifelong prognosis so I researched like crazy and took every opportunity and even some risks. I’m glad to see you took your recovery as a risk that was worth the effort too.
yes, I understand your concern. As with cancer, CFS can be very aggressive for young patients. At the same time, age does not help recovery.
What EBV is concerned, antivirals shall be administered early on, if I know correctly to prevent the onset of autoimmune-like reactions.
If your son does not have any symptoms he seems to have avoided this nightmare. Check his NK cell number and function. If it is not low normal than everything is OK. If it is low or low normal, there are immunomodulators which are useful. This is my experience.
It’s not as narrow as literature makes people believe. The medical industry engages in fear mongering, to keep patients in a state of learned helplesness (and purchasing their products – medicines and treatments)
Many can and do recover, even when they are not as. Or they can regain enough functionality to live life again.
And this ia not onky in Me/CFs. My favorite atory is the greek man who beat cancer by refusing his doctor’s treatment and lived wayyyy into old age, paat what most so and healthy and able at that.
Adam you seem to be missing the point of what I’m saying. Doing follow-up studies for these already existing studies is a lot easier and cheaper, since funding is always the main issue in ME/CFS. If we could already get a positive result from these patients, (as I mentioned these are way more than 10 000 patients, i.e. any positive result will be statistically significant) this motivates further studies very easily. It’s a cheap, very quick and easy way, not an optimal way.
I have no information about 10 000 patients using any treatment with CFS but you may be better informed. To assess results patients should use the same vaccine (or substance), same schedule and exclude other treatments. It is not so easy to find positive results as you can imagine. I haven’t used any treatment where patients’ experience was similar. I basically recovered from GcMAF. If you google GcMAF, you can find only complaints and caution for risks. For me it was very good. CFS is complex and there are subgroups.
What BCG is concerned, I found no positive results with cfs. Just because there is some information regarding BCG and post-covid, it is not something to rely on.
My example shows an absurd situation where a patient (without any doctor) relies on some clinical results (unrelated to CFS) and where the treatment proved successful. No one uses BCG for this disease, neither did Carl. This is a nightmare for a doctor.
To clarify things: Studies were peformed for the BCG vaccination and acute Covid-19 by adminstering a BCG vaccine and subsequently looking to see if the patient developed Covid-19 and looking at their disease severeity. These RCT were performed with a total patient cohort larger than 10 000 people. This a priori has nothing to do with ME/CFS or Long-Covid.
The BCG vaccine hypothesis as I understand it for ME/CFS and Long-Covid is that with its proven immunemodulatory effect administering possibly multiple BCG vaccines or even mix-and-match vaccinations with other immunemodulatory vaccines (for instance JEV or Carl’s vaccine) can have a positive outcome on already sick people. Wether these vaccine’s have to be given biweekly, monthly or for how many patients this works is something we do not know. Getting funding for a RCT for ME/CFS and different BCG vaccines administered at at different intervals is very unlikely given the lack of funding for ME/CFS research.
What I’m suggesting is that follow-up studies for Long-Covid to the already existing BCG and acute Covid studies can be easily, quickly and cheaply performed. Of course this is not equivalent to a RCT for ME/CFS and biweekly BCG vaccines. However not ever case of Long-Covid is severe and a immunemodularoty effect preventing, shorting the duration or severity of Long-Covid could be present. Given the sheer numbers of patients (>10 000) any statistical significance will be a relevant one. These results could then motivate a proper BCG study for ME/CFS.
Of course these were single dose vaccinations, in a short time frame and vaccination before infection, but this could still yield statistical significance, given Long-Covid doesn’t have to be severe. This is not a perfect plan but it could be a cheap, quick and very easy first step.
Hi Oscar, thanks for the clear explanation !
This is a cheap and low risk treatment option and results will always be conflicting. Some doctors could simply try it based on risk/benefit analysis.
Time flies quickly.
Of course, you’re right about that, but what we need desperately is research and studies. Results will never be 100% for anything, especially for ME/CFS, but that doesn’t matter once you find different things that are staistically relevant.
Let’s also not forget that many doctors won’t give you a BCG vaccine without scientific evidence of it working for ME/CFS. Many doctors and countries still treat ME/CFS as a psychological disease the same applies to Long-Covid, you won’t have any luck with them…
Oscar, in Hungary, this is not considered a disease either. In addition, health care is severely underfunded. I was advised by the chair of the medical faculty to look for some reckless doctor to assist….
The only reason why I summarized my experiences was to motivate patients not to give up. Sooner or later you will find a supporting doctor, you try it and if it not effective stop using it.
Scientific evidence is difficult to obtain when there are no disease markers ! When I was in Brussels lab tests changed every 6 months. I had to pay for them every time more than 1000,-EUR (same in dollars) !
You’re absolutely right and this was no critique in any way. We’re extremely thankful for you sharing your experiences!
Have anyone done stem cell therapy in ME patiënts? It helps MS patiënts. Are there ME patiënts with expercience of this therapy? I never read that. It is a dangerous therapy but our disease is awfull too.
Dr. Paul Cheney took a group of patients to Panama for stem cell therapy some years ago. It was $20,000 for each patient. Middle-aged and older patients seemed to do well for a year or so, but relapsed. Some younger patients appeared to be cured.
This experience influenced Dr. C to develop Cell Signaling Factors, one is MTF which he described as stem-cells in a bottle. A tiny amount on your foot at night will have a profound effect the next day. I feel worse the next day, but better after that. The other two CSFs are for heart and brain. I have had good results will all of them, but only use the MTF sporadically because of its strong effects.
Thank you Betty for this information! Very interesting!
How fascinating. Glad BCG shows promise.
I just wanted to add a note about LDN which I’ve found to be helpful with fibromyalgia, hypothyroidism & my worst problem of all, multiple chemical sensitivity.
I couldn’t take the drops that you swallow, ruined my life with constant diarrhoea. The sublingual drops have been very helpful though. Sensitivity reduced and PEM much reduced. I’m proud to say I walked 17 kilometres the other day & was able to walk a reasonable distance the next day too.
Another quick comment, this time relating to the Japanese encephalitis vaccine story : https://www.healthrising.org/blog/2023/03/17/japanese-encephalitis-vaccine-long-covid/
While this may well be an effect of the JEV vaccine, there is another possibility opening up from looking at Rachel´s vaccination schedule. As pointed out by @5ter_Timo_vl on twitter (https://twitter.com/5ter_Timo_vl/status/1640800660240191490), the positive effects may have also been caused by the typhoid fever vaccine Typhim vi. The latter is not a life vaccine but could have non-specific immune effects as indicated in this experimental mouse model of MS (here, Typhim vi improves the course of multiple sclerosis in mice: https://ncbi.nlm.nih.gov/pmc/articles/PMC6092617/?report=reader ). Just to keep our minds open to all possibilites!
I don’t believe in the once-in-a-year vaccination protocol for BCG in CFS. MS is a different disease and I do not know Herbert how the symptomatic improvement was checked. In addition, in my experience, as soon as I decrease the frequency bellow twice a months, the results starts fading. Carl’s approach is also monthly vaccination and not yearly. You can test it on yourself. If you do not experience any effect, switch to bi-weekly administration.
I do benchpress at the gym with 100 kg (220pounds) twice a week. In addition, I swim once week for an hour without being tired. Vaccinating once a year would leave me in a medical condition with no work and no sport. I don’t even catch COVID.
This is a very hard-to-treat disease. As Dr. Klimas also added no chronic disease can be healed with a single drug therapy. The reason is the chronic state means that many pathways are boggled and not working. You cannot just tip back.
What a great article thank you
If anyone figures out how to obtain BCG vaccine in the US – or how US citizens can obtain it by traveling abroad – I hope it is shared here. I’ve been trying to get access for years and keep hitting roadblocks. My doctor even called US hospitals and health departments arguing my case, but was told I’d have to prove TB exposure to be allowed the vaccine.
Blythe, BCG is distributed NOT in hospitals. This is how you can obtain it:
1. Off-Label licence
2. Forward it to a wholesaler trading with BCG
3. You get your BCG in a pharmacy.
I am sure it can be ordered in the USA.
I went through the same, though. Now, hospitals call me to tell how to administer it :)))
Congratulations Adam, you’ve won the lotto! I usually find personal recovery stories more interesting than some convoluted hypotheses that only explains a particular aspect of MECFS. And I think it’s worthwhile for other patients to try, however small chance at the recovery it may offer, as long as the treatment is not dangerous or expensive. If it works, the payoff is huge. If it doesn’t, well, it didn’t cost too much. No idea about the cost/danger of this vaccine though.
The thing about recovery is that you finally realize that how sick you were, wallowing in semi-delirium day in and day out for years. You finally remember how life used to be, and should be, with a cup of coffee on your hand and cool air on your face in early morning hours in the back porch, fully awake and alive. I wish there was a proven treatment for everybody, but anecdotal one that may work for some people is still better than nothing.
yes, that is true. It is interesting that as your health improves you start comparing yourself to healthy subjects. I do everything I did when I was healthy except running. I walk on the treadmill. Working out in the gym and swimming satisfies me. Of course, 4-6 hours of sleep is no more enough but I am getting older too….
There is something pernicious about running. I myself can do just about everything, but I still get knocked out for about 6 hours the next day if I jog 4 blocks without pacing. Funny thing is, I’ve been skiing hard this winter and the post-skiing recovery hasn’t been much worse than normal.
I have a feeling that I’ll get knocked out for only 6 hours even if I jogged 8 blocks instead of 4. I think the little remaining exertion-hypersensitivity is getting triggered at the same old threshold level and still causing the problem, but it doen’t get any worse with more/harder exertion since only small number of hyperactive microglial cells remaining. I’ll give that a try when the skiing season is over and I get my money’s worth out of the Epic Pass.
TK: Subsequent to a year of Famvir and LDN 4.5 mg (gradual increase in dose) my stamina improved. I find if I walk briskly and jog intermittently (I jog until HR increases to 105-115 BPM, which takes a bit since I’m on a beta blocker; then I walk until HR is down to 85 , the jog again). This intermittent approach, with workouts limited to 15-20 minutes tops, yields decent cardio without relapsing.
Yeah, that’s about what I do: run a block slowly and then walk till HR comes down, and then repeat 4 times. I call it Low Intensity Interval Training LOL.
Hi Cort. Isn’t there a trial going on using BCG for Fibromyalgia?
Massachusetts General Hospital was going to do the trial but I don’t think it ever got started because they couldn’t find enough male participants (of all possible reasons):
I took Gillis’ FM/a test maybe seven years ago when he promised all participants that that he could “diagnose and cure FM” with BCG and we would all receive the cure at MGH after a trial. He has gotten people to pay for his test and pay to donate their own blood to be part of the biggest blood bank of people diagnosed positive with his test. He told us all that the blood would be analyzed to contribute to FM understanding. i believe he started testing 10 years ago and none of us has been notified of any cure available at MGH or anywhere else. He was going to use the BCG vaccine, administered by an MGH neurologist who apparently saids Gillis has not been in contact with her for some time. Gillis stopped the trial before completion and has never communicated with any of the thousands of applicants/subjects to my knowledge. This has been a tremendous disappointment, possibly criminal, for all of these people but no one seem to be following this up with legal action. People with fibromyalgia do a worse job of advocating for help with their disorder than any nother disorder i know. I’m sure some of the participants have died while waiting for Gillis’ cure; I’m pretty old and sick myself and have given up hope of help from him.
Thank you very much for your story, Adam. I feel compelled to comment on several items. First is *never give up* because no one is going to help you. You are going to have to do this all by yourself. There are people working on this, but even if a cure was discovered today, it wouldn’t filter down to us plebs for a generation, no matter how much we scream for it.
Sunshine. I agree, but I live in Canada (nine months good sledding, three months poor sledding). After I saw red light therapy completely eliminate symptoms of IVDD (Intervertebral Disk Disease) in my dachshund I started investigating red light therapy for people. So many people who bought the Australian version of a red light pad for dogs and horses said they used it on themselves and found that it was a great non-pharmaceutical anti-inflammatory. Then I found more information. Many people are aware of laser therapy and use it on dogs, horses, and people. The thing is, *it’s not the source that matters – it’s the wavelength* so I looked into LED’s because they are cheaper. I now use a Platinum LED setup on the wall in the bedroom twice a day. It’s not the UV light, it’s not the ultraviolet. It’s 630nm, 660nm, 810nm, 830nm, and 850nm that helps. It took me a full year to work up to 10 minutes at 6 inches twice a day. Recently I thought it wasn’t doing anything helpful, but if I stop I get a a flare. I also realized that I stand up and turn around for the light to reach my entire body. However, it never touches the top of my head because the light is on the wall. The top of my head hurts a lot and I am losing hair there, as well. So I added 3 minutes twice a day to the top of my head. Now, I can scratch the top of my head and it doesn’t feel like red hot iron nails scraping my scalp and my hair is coming back in (looks kind of weird). It took a month for that to work, so you have to have patience.
LDN is very helpful for me but I had difficulty getting it to work. 1.5mg just simply killed my stomach and gave me headaches and a terrible flare. I dropped to .25mg and it was better, but not good enough. I begged and pressured my naturopathic physician and my pharmacist to make it a topical. Bingo – that worked. I worked my way up *extremely slowly* to 6mg each bedtime, but it became expensive that way and I was a walking slime ball all day long. Then I read that Naltrexone is water soluble, so I tried getting 50mg or 100mg tablets and crushing them, adding distilled water and letting all the white crap settle to the bottom of the dropper bottle. Then I use an eyedropper to dose. That did it – it was the additives that did me in, not the naltrexone itself. After two years, I’m steady on 6mg in water at bedtime, and I wouldn’t be without this medication. Ever.
I also use Thymosin alpha-1 but not as an injectable. I buy the injectable powder in a vial and I reconstitute it with bacteriostatic water and make a nasal spray out of it. One spray am and pm and my nose is not bleeding constantly (very embarrassing). A thought: could you use the BCG vaccine as a nasal spray? Maybe a pharmacist could advise.
I take a lot of other things, too, and I am tolerating more activity than ever before. 5-HTP, NAC, heroic doses of DAO and Quercetin, Fisetin, Luteolin, 7-Keto DHEA, NMN, PEA, Resveratrol, Ashwagandha, plus Magnesium and vitamins A, B, D and K2.
Do you think nasal spray BCG is worth investigating?
I investigated nasal administration too to avoid scares on my shoulder. I do not care for it too much but for female individuals it is worse I can imagine. When I go swimming people think I use steroids bc my shoulder are inflamed. I have on average one open wound on my shoulder. I use now pure aloe juice and it is better.
The problem with nasal administration is that BCG causes inflammation of tissue. I would not experiment with it. In addition, you do not know the right dosage this way. Results come slowly. If you change the way of administration who knows what you can expect and when.
I think that sunshine is unique not just bc of light. It is documented that sunshine exerts anti-inflammatory effect AND it decreases unregulated immune response. Thus, it helps with the autoimmune side of this disease. At least with this disease. With lupus, sunshine causes deterioration. With CFS it proved to be useful. Of course, I participate at skin cancer screening once a year and watch my moles.
In Hungary, I also have problems with sunshine. Although we do not have winter any more but enjoying sunshine in a bathing suit is possible only from May to early October at best. Weather changes a lot. Winter is warm but spring is often cold….. This year, January was much warmer than February and March is also cold. Last year, we had snow in April. Beaches open on 1 May in Hungary. The temperature was bellow 20 degrees…. Crazy environmental changes….
Dear Adam, for how long have you been taking BCG by now?
You write “I have on average one open wound on my shoulder”, so I assume you are still taking it? Do you think you’ll need to take it continuously or stop after some time?
And will you update us in a year or two if the effect was lasting?
Thank you very much!!
I started using it 3 or 4 years ago (before the COVID pandemic) and yes, I still use it twice a month.
This vaccine helps re-regulate your immune deregulation. As soon as you stop using it or decrease frequency, symptoms come back. Honestly, I was considering using even more often (even smaller dosage) but it is not manageable. Too many wounds.
Many researcher is of the opinion that chronic diseases require more than one substances to treat with (various systems are intertwined). Therefore, I do not think it will ever get me to 100% but it is manageable. No one knows I am not healthy and I do not think of myself as sick either.
Thank you very much Adam! It’s great to hear you’ve been using it for 3-4 yrs already – so this really sounds like a lasting success!
I assume the wounds is at the point of injection where the bacille makes a bubble? Or did you get additional skin irritation in other places? Kind regards!
The result is lasting and there is no tolerance to it.
This (redness, scar) is the normal reaction to vaccination. I sent photos to Carl, he said it was perfectly fine.
If I am in the sauna or swim, it is visible (like someone in puberty). It is not disgusting but female patients could assess it differently.
Even though few people with CFS/ME report that sunshine helps them significantly, I have known for more than a decade that sunshine helps me a lot. I can have energy for several days after a few hours of sunshine in the spring, summer and autumn. Light therapy at 10000 lux and Vit-D can help in the Winter but not anywhere close to the real sun.
I did not deteriorate this winter after being put on Atorvastain 20mg (since last September). I concluded that I may have endothelial dysfunction and there is some evidence that statins increase NO (Nitric Oxide) production in endothelial cells so I likely have an NO problem as part of my condition (NO controls the targeting of blood flow to the various organs, muscles etc)
After a lot of reading, I uncovered that UVA light, between 340 and 370nm, stimulates the skin to produce NO and the effect can last for several days after exposure (which matches my experience).
Separately, I found literature which suggests that moderate exercise stimulates the muscles to produce NO and this also seems to match my experience of getting better with light exercise (brisk walk) but worse with intense aerobic exercise (running).
I have not risked UVA specific treatment (but do expose large areas of my body to the sun for 15min periods on sunny days) because the statins and exercise keep me good enough for now (as long as I keep within physical and mental energy limits). I will investigate it as a Winter treatment if statins cease to benefit me.
Note that I don’t believe that methods of increasing NO levels are a cure because my issue appears to be in the dynamic regulation of NO. However, a higher average level helps at a cost of waking earlier in the morning and having lighter sleep overall.
The sun has numerous other benefits so any one of them may be helping you but NO production is a significant one which may be worth looking into.
thanks for sharing your experience !! Statins have lots of side effects, you are lucky if you can tolerate it.
What NO production in CFS is concerned, it is dysregulated too. This is why I administer myself 10 mg hydroxocobalamin (B12) IM twice per week. It binds NO which would cause nitrosative stress if not bound.
Note that I am hesitant to use any artificial light therapy. I believe in what nature created bc the human body developed in a symbiotic relationship with nature.
Under sunbathing I mean sitting or lying out in the sun for an hour or more (in bathing suit, uncovered). You have to do it on a continuing basis. You will perceive the benefits after 2 weeks. The difference is drastic and comparable to an immunomodulatory treatment. The only reason why we have to identify some immunomodulatory treatment is bc too much sunshine increases the risk of melanoma. This is why I enjoy sunshine only between May and October and only in the morning and in the evening. We also travel once a year (during winter) to the Canary Island for 3 weeks. In November and December, UVB radiation is moderate there. Moderate UVB radiation has numerous medical benefits. Of course, if you have a fair skin complexion, the situation is different. Burning from the sunshine is dangerous.
I have had no side effects so far from the statin but it is a low dose (20mg) and I have to take it because of a minor heart attack in September (which suggests an endothelial problem since I have low cholesterol, low blood pressure, low weight, low stress and the angiogram found no blockage).
I get the sun in the Summer similar to you but am very white (Irish) so I am cautious.
You seem to imply that NO is bad for you and that you take the B12 to offset some of its effects but I speculate that I am not producing enough NO to direct blood flow to my muscles (leading to frequent injuries) and to my brain (leading to brain fog and poor memory). Without enough blood flow to the brain for a sustained period, inflammation eventually occurs (that’s what it feels like) and that is when I have to literally shut my brain down (by lying down in a quite room and dosing for a few hours (can’t sleep properly)).
This lack of NO also leads to my temperature regulation issues.
Everything that causes NO to be produced helps me a lot so higher levels of NO are good for me and I get that from moderate exercise, sunshine, Vit-D and the statin. The fact, that sunshine helps you as well could suggest that you need higher levels of NO and not lower levels.
according to clinical researches, there is oxidative and nitrosative stress in CFS. This means that NO is high and not low. This is well documented. b12 is part of every single medical protocol I know. Carl also used it in addition to folic acid (methylfolate).
The brain issue is a little bit different according to those papers. Due to endothelial dysfunction, blood supply of the brain is low even if NO is high!. This is kind of a regulatory dysfunction.
Temperature regulation is a basic symptom is CFS. It can be traced back to numerous deviations.
Your current status is the result of your genetics. If statins work it means you have something else for which it is good. We all have genetic defects (even healthy individuals).
If you are blond be careful with sunshine and participate in regular skin tests.
Many substances in the body need to be tightly controlled and NO is one of these. Too much will lead to oxidative stress but too little is even worse because the vascular system will not get sufficient blood to where it is needed. If sufficient blood does not get to various organs then inflammation can occur as well as a lot of the symptoms of CFS. If too much NO is in circulation, it may lead to oxidative stress and eventually result in CFS symptoms. Either path leads to the same end-game of potential inflammation, PEM, ANS dysfunction, brain fog etc.
As we are all too familiar with, what is good for one person often makes another person worse and that is what makes this so difficult to understand not to mind treat.
Some day, all of this will be understood and there will be a name for what each of us really have. In the meantime, each of us must experiment to determine which treatments works for us.
For me that is to increase NO levels by taking statins, getting plenty sunshine in the Summer, taking Vit-D, doing a lot of moderate exercise (all of this comes from various medical research papers showing how each contributes to NO production). Of course, each of these has numerous other effects as well so we can never truly know the exact mechanism by which a positive effect resulted.
My initial point was simply that one of the effects of UVA light was to generate NO in the skin with the generation continuing for several days after exposure (https://www.nature.com/articles/s41598-017-11567-5).
I appreciate you sharing your story with us.
I checked out this link, very interesting. Take care !!
Adam: Thank you for sharing your inspiring story: Re:sunshine and autoimmunity: 35 years ago I traveled to the Dead Sea in Israel to treat my psoriasis. Daily sun and mudbaths cleared it up 100% and it never returned. The heat was hard on the CFS though.
Yes, the heat can be hard. Avoid heat if possible. I also experienced heat intolerance but it is long over. Once I had fainted during mowing the lawn bc my blood pressure dropped bellow 90/40.
Hi Ann 1, where you the one who asked me longer time ago if i used the HTTP and if your info on it was usefull for me? I could not answer at that moment… And now I have even deleated cort’s mail, had to findthis blog online, so will not get automaticly a notice (i think) if you write something if it was you or not…
Yes, konijn, it was me. Did you try 5-HTP? If you did, did it help you?
Hi Ann 1,
i got your message in mij mailbox allthough i had deleated by coincidence the mail from the blog… when you first wrote it, i was and am still “scokked” because, really sorry, i could and can not remember a thing that you wrote for me about HTTP. I am really not doing verry well…. I remember long long long time ago, i tryd-do not remember the dose, the meds, etc I was on , only a “light” memorry that i was not well on it. can even not remember what was wrong, so long ago. do you maybe know in wich blog you wrote it to me? was it to me or someone else? sorry i could not react immediatelly! And sorry for your effort! hope you are doing better then me…!!!
I don’t remember the blog, but here is the information:
1. Buy 5-HTP here, just replace the [dot] with a period in the following link:
https://www.bulksupplements [dot] com/products/5-htp-griffonia-seed-extract-powder?_pos=2&_sid=3d6e5bec5&_ss=r
2. Put 1/4 teaspoon of the white powder under your tongue and leave it there for 20 minutes. Then spit it out and rinse your mouth. Do this once a day for a week and then twice a day.
Try it and then tell us if it helped you or not.
thank you Ann1. I will print it out. Now way to ill and must see what i do because tappering of meds for sleep with ashwaganda. must watch closely if i decline, how i react, etc. No several things together and like now, i even could not stand on my leggs to spit it out. for what was it good? i thought from my trial verry long time ago for sleep? but reacted not good. May i ask if ashwaganda helps you sleep (i take it at bedtime) but read some take it in the morning. read some good results with withdrawal but feel awfull today. when do you take it if i may ask? and how much mg. Mine is 300mg. at bedtime. it went well but not last night…and today…
Yes, konijn, don’t make any more than one change at a time so you know the effects are from that one change and not something else. It will take a while for your order to be delivered, so order it now and do all of your other experimenting before it arrives.
Ashwagandha keeps me awake. No way could I sleep if I took 300mg at night. I take ashwagandha in the morning.
Take 5-HTP in the morning and at 3:00pm. Not later in the day or you won’t sleep. 5-HTP helps me with mood, focus, energy, and helps reduce my stiffness.
thank you for your info Ann 1. the strange things in the reviews was that people slept from it, could tapper of meds, but 1 cfs patient took it during the day and got also awake from it. on the bottle stands for sleep and stress. now you make me wonder if i slept so bad last night because of it..?? or coincidence…I do not take it so verry long. how much ashwaganda do you take if i may ask? i take 300 mg. It is a verry long tapper of (if i even make it) and then first other supplements needed. or a med. like NAC… but i certainly will let you know if i test the 5 HTTP. What does ashwaganda then do for you? if you can not sleep on it? you wrote repale the dot with a period. what does period mean? sorry my english. why ordering it from there? with what do you sleep if i may ask? or do you not have insomnia?
I take 150mg of ashwagandha with breakfast. It does not make my insomnia worse. If you move your dose of ashwagandha from bedtime to morning, you will not have to taper the dose. Just move the dose to morning.
Ashwagandha helps me have a better mood. It helps me have more energy. It makes my pain less.
I included the link for you to go to Bulk Supplements to buy 5-HTP. I cannot put the corrrect link in my post because the post will not show up on this blog.
So I changed the link. The link will not work if you click on it as it is. To make this link work, you will have to copy the whole link in my post above into your browser, and then change it before you search. You will have to replace the [dot] that I put in there. You will have to remove these letters
and put one of these in there instead:
with no spaces before or after. Then search. It will take you to the page where you can buy 5-HTP.
For sleep I take CBD, CBDA, quercetin, melatonin, and pycnogenol. I sleep well.
thank you Ann 1! I will print this out. slept last night like a baby, even while furtertappering of… with ashwaganda etc. Ofcource i do not know if it stays so but if i can tapper of, it is good for me if i do not decline dramaticly. Unfortunetly in my country, except for MS on prescription nothing with THC is allowed. And i live so long time isolated, no one would get me some …I do not know, i thought they sold here CBD pure. But long time ago, i saw a documentery from a child, do not know wich desease anymore who got CBD+in it 2 or 3% THC. Soi do not know if your CBD is the same, only CBD, nothing else then yours? the pycnogenol is also available here. But still on meds and with a positive reumafactor witch needs to be controlled again I must watch out says webmd. that is also with the ashwaganda i take but have my reasons to give it a try. But quercitine, pycnogenol, i can not find as sleep aids. yes, melatonin, CBDA probebly?… I woke up fine but as allways, one step out of the bed, lympnodes, runny nose, (often my ears and bronchi)..
ps and my throath ofcource. and the lead feeling as if I am glued to my matras…And can almost do nothing.98% bedridden.
Glad to hear you slept well. Remember to take your ashwagandha only in the morning, not at night.
I take pure CBD. No THC. You should be able to get that in Belgium.
If you have problems with a runny nose and sore throat and bronchi you could try an H1 blocker like Claritin. One in the morning and one at bedtime. These are over-the-counter.
Melatonin is very good for sleep, but you must take 20mg at bedtime. No less.
Adam, I am in awe of your perseverance and generosity in sharing your story with us. Thank you!
Thanks Sarah. I have to admit it is a perverse situation when a lawyer has to find out and try a treatment…. We needed curious doctors to rely on.
First, I was trying to obtain a BCG off-label permit from the director of a big medical school. His specialization was immunology. He told me that “this is funny when patients come with treatments options”. He also added that “while BCG would not kill you, it will make no difference”. He suggested using steroids. I replied that there are no favorable results with steroids with this disease. He replied that he could also use it with me to show that it is harmless. He was unable to understand that this is not about being harmless, I would like to regain health and have a life…..
Finally he suggested finding a “careless doctor” who is willing to give me a stamp on my petition which is clearly against ethical rules….
Now you can write him about your success 🙂
This professor would say I have always been healthy….
I also visited a church hospital for children hoping it will be more receptive and I also knew the director. He responded by his secretary as follows:
“Please inform the lawyer that we are not willing to participate in clinical research. Should he not understand, I can communicate it orally too” :DDD
To be fair, I do not blame the doctor. CFS is not a well known disease. In addition, sometimes patients are irritating. My neighbor was an 80-year-old pediatrician. Very sweet old lady 🙂 She kept telling me that the biggest competition for her was the “Polish market”. People went home, discussed with one another (and the sellers) the proposed treatment and came to the conclusion that the proposed treatment was bad and some herbal tee would be the best solution. Everyone today is a COVID expert…
Hi Adam, Good for you, i am jealous 🙂 I have some guestions because CFS is not caused by one thing. Also we have different type of patiënts. Did you experience any of the following symptoms when you had CFS?
1. Did you have tachycardia or POTS?
2. Did you expercience any breathing problems?
3. Did you have any food allergy or intolerance?
4. Did you have the feeling of stress, anxiety?
5. Did you have a feeling like your in the overdrive and the body can’t relax?
6. Did you have the feeling of sleepiness and sleep all day?
7. Did you have sleepproblems?
8. Did you have more infections when you have CFS? If yes, what kind?
9. You have had exercise intolerance or PEM
10. Did you experience intestinal complaints such as irritable bowel?
I hope you want answer the questions so we can learn and see what type of patiënt you are.
That might be very helpfull.
Good luck and thx for sharing your story!
I had overstimulation (GAD), sleepiness, PEM and digestive problems in addition to severe fatigue. What digestive issues are concerned, antibiotics therapy in Brussel harmed a lot.
Adam, Did you struggle with pain? And, if so, did this resolve with BCG too?
I have never had pain. My biggest concern was fatigue, foggy brain and generalized anxiety. All of these can be traced back to immune dysfunction. My family doctor told me he had feared ethical procedure of the medical chamber bc I was prescribed so many medications…
Right now I do not take anything.
Adam, You’re a fighter and a hero for never giving up. Trials require immense bravery but to participate in those and then go steps beyond that with doing your own research and trials is incredible. You’re an inspiration and your message of never giving up and taking matters into your own hands even if it takes a long time is deeply moving. Thank you for your bravery, willingness to share, inspire and, most of all, for your grit. Your story is my reminder to keep seeking and trying new treatments because no one in this world is going to do it for us. I hope for you continued improvement for all your hard efforts.
Thanks Shea ! My purpose was to motivate by truth ! If you have immune deregulation, the symptoms are almost unbearable. As soon as you find some substance to improve your immune status, the difference is day and night.
This disease is manageable and that is very important. Healing is something else but we all have to manage this disease until someone finds out what is wrong.
Life requires bravery but is is worth !!
Finally, I often have fear that my abilities will not be enough in the legal profession. Big workload, need to react quickly etc. My pastor kept telling me that success is not necessarily the result of any ability or talent. Sometimes, life teaches you that you will succeed despite your abilities. This is the lesson. If you work hard and you are fair to others, you will simply get it back. I believe in it. This was not always the case with me.
Take care and never give up ! I just lost one of my colleague who suffered from ovarian cancer. She was 42. During her last 2 years she was restricted to wheelchair, had no hair, her vision diminished and suffered from constant diarrhea from chemo. Her petitions for immunomodulatory treatments were rejected bc of supposed lack of success at this late stage. She wanted to live despite everything ! She even registered to PhD studies 6 months before her death. We live only once 🙂
Adam – thank you. Question – you said that LDN decreases your muscle mass. That’s interesting. I take 4.5mg of LDN. But lately I’ve been suffering from serious tendonitis in my legs (whenever I exercise). I’ve been biking and I get this serious inflammation which feels like shin splints. I am wondering if you think LDN has something to do with it? I’ve been thinkin of eliminating my supplements one by one to see if that’s the problem.
You are the first person to say that LDN decreases muscle mass. Would love to hear more! – Susi G
Susannah: Also awaiting Adam’s comments on LDN and muscle changes. Remember though, LDN has been shown to improve muscle pain among FM patients. Most patients adapt to it over time. It took me more than a year w increase my dose from 1.5 mg to 4.5 mg.
LDN is a useful substance. All immunomodulating substances may cause muscle wasting to some degree. From taking GcMAF my jeans size went down from 33 to 29. LDN is weaker in effect and therefore better with side effects too.
Yes, it may improve muscle pain and at the same time cause muscle loss.
I do not want to lose muscle mass and therefor limited LDN to 1.5 mg. Later, I further decreased it.
LDN is not the first supplement which has catabolic effect. From GcMAF, I lost 15 pounds even without diarrhea.
LDN also causes weight loss which is muscle loss. This is dose dependent.
I do not know if tendonitis can be caused by LDN but you cannot rule it out. Because you muscles break down from LDN, it may be a result.
Note that this is a natural reaction of the body. Immunomodulators improve the operation of your immune system and this effects metabolism. In my case, I lost 5 kilos (almost 10 pounds) from 4.5 mg LDN. I also looked worn from LDN which is not good. I do not want to look sick, I have clients 🙂
Note also that LDN may have different impact on female patients. For some female patients, it may cause hair loss (by inducing androgenic alopecia). I had never experienced that. Such symptoms resolve after stopping the use of LDN.
Unfortunately, you have to watch it yourself. Clinical research is limited and doctors do not have enough experience. Try to eliminate your supplements and see what happens.
Thank you! This is SO helpful. I am also experiencing hair loss! I started taking LDN to combat CF type symptoms. And it appears to work. But maybe I can back off it and see. Can you share any research or studies? I didn’t know about the side effects. I ramped up to 4.5 pretty quickly and I’ve been feeling good – but the tendon thing and hair loss is worrying. So grateful to you for posting!
there are no clinical studies regarding LDN and hair loss. This is just my experience with friends. Female patients tend to have hair loss from LDN (some of them). I have never had. I had hair loss from GcMAF but that was moderate.
Any more info about this? “Herbert reported in the comments that you can purchase the BCG vaccine in Germany” I could ask someone to get it for me in Germany.
Тhanks Adam for sharing your BCG experience. I wanted to use the Russian staphilococcus vaccine, but unfortunately the manufactururs from Medgamal doesn’t supply it at the moment and they don’t know when they will start production again. So I’m going to buy some BCG and start the experiment. I’m hoping to have it delivered to me within 2 months because I’m in the UK and it’s impossible to get it here and my supplier is in Eastern Europe so it will take time for them to deliver it to me in person.
the Russian staph vaccine does not work for this purpose ! Carl tried it. Its composition is different. Just bc that is a BCG vaccine does not mean it has the same immunomodulating effect.
If you can obtain BCG in 2 months, that is very good !
Good luck !
New research paper (2023):
Several suppliers on Indiamart are selling Onco BCG vaccine for about $10 per vial. It would need to be shipped in an icebox within four days to keep it within the 2-8 degrees storage temp.
I just got my 20 ampoules 0.5mg(10 doses) powder for suspension for injection (freeze dried) and diluent for BCG vaccine(saline). Now i have to figure out how to use it, as i have no idea. Probably i have to take one lesson. Everything cost me 25 Euro , so very inexpensive. We’ll see how it is going to work for me, now first i’m starting Nimodipine
Where did you get it from please? Hope you figure it out. Keep us posted
I got it from Bulgaria. I can’tunderstand why each ampule is 10 doses, so i will waste a lot of them(Adam suggested to use it after opening only once)
Note that the BCG vaccine is *NOT* targeting a virus, as is incorrectly stated in the article. Mycobacterium bovis is a bacteria – the one that causes TB in cattle (and some humans). Like most live vaccines, it is a weakened strain of the pathogen that cannot cause disease.
I think it is important to mention that BCG, although weakened, can cause illness. It is a live bacteria and must be handled with caution, especially around those who are immunecompromised. It is commonly considered the gold standard in the treatment of bladder cancer. It is used at much higher doses than the vaccine and is placed directly into the bladder. Instructions for bladder cancer patients include using a separate bathroom from other family members for six hours post–treatment and using bleach to clean the toilet to kill the bacteria after each use.
Although the bladder usually prevents the BCG from entering systemically, in rare cases, it can disseminate, leading to serious illness that can show up in different organs of the body or lead to sepsis. BCG infection after bladder cancer treatment is difficult to diagnose. The treatment is at least 6 months of four different antibiotics with the potential risk of liver toxicity. We are in the midst of trying to figure out the best course of treatment for a family member in this situation.
BCG may be a good treatment for ME/CFS and I appreciate Adam generously sharing his experience as well as all the helpful comments here. I imagine that the low dose of the vaccine makes it very unlikely that it will cause disease. But it is important to note that BCG, though weakened, is still a live bacteria and in certain cases can cause illness and should be handled appropriately.
In addition, there is currently a serious shortage of BCG for the treatment of bladder cancer in the US and some other parts of the world. Many patients are receiving partial doses or a substitute treatment so that makes it harder to attain.
Hi Adam, just wanted to check with you about response times. It seems that only after 3 months did you start to experience improvement. Was there any sigh it was working before the three month mark?
Hi Adam, I live in Hungary too. Did you find a local specialist maybe, who understands this disease?