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.
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)
|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
|LDN (2.5-4.5 mg/day)
|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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