Hidradenitis suppurativa and bacteriophage therapy – #P0001
The following is information shared by a patient who has taken bacteriophages for their condition. For privacy purposes, all personal details of the patient have been removed and patients are given an individual code.
Brief patient background:
- Condition: Hidradenitis suppurativa
- First appearance of condition – Age 8
- Stage – 3
- Other conditions – N/A
Medication taken for condition throughout the years:
- Rifampicin + Dalacin C
- Septrin forte
- Seprin forte + Flagyl
Creams, ointments, treatment & remedies:
- Autologous blood therapy
- Tea tree oil
- Levomekol ointment
- Bactroban cream
- Iodine solution
- Staphylococcal Bacteriophage (Staphylococcus)
- PYO Bacteriophage (Staphylococcus, Streptococcus, Proteus, Esherichia coli and Pseudomonas)
Hidradenitis suppurativa state prior to phage therapy
Hidradenitis suppurativa, as many chronic conditions that have a direct relationship with the immune system of a patient, is very individualized in the way it develops in accordance to the patient. In my case flare ups appeared once every few months in the beginning and the size of these inflammation ranged between the size of a hazelnut to an almond. As the peak puberty age hit, more flare ups would appear at a go and the timing between would decrease. For a few years the inflammations were on clock work and worked around the monthly cycle. For about the first 10 years, my lymph nodes would get enlarged, as the body was aware and tried to fight back. In addition, I had weakness, an elevation of temperature and an overall unwell feeling every time flares had appeared. Flare ups would normally appear in the locations as the previous ones, now the size range of flares increased from the size of an almond to the size of a walnut.
After the first 10 years, the cycle of flare ups began to be spontaneous. The appearance had no order, the duration was also unpredictable, I no longer felt unwell and my lymph nodes stopped being enlarged. My body had accepted Hidradenitis suppurativa and the inflammations as part of the norm for my body. At this stage, the multiple inflammations that were at close proximity, which appeared over the past years, had ripped through the connecting tissue from the inside, resulting in not multiple flares by one large inflammation. The smallest flare ups were the size of a walnut and some would extend to the size of a plum.
The inflammations would extend the pain outwards, causing flares in the groin to spread pain across the entire thigh area, up to the knee. The duration period of the flare ups was a minimum of weeks with some lasting for months with the pain being constant. In some cases, they would open as the inflammation spread outwards, whilst some would remain closed with the inflammation extending inwards, digging into the underlying tissue.
Hidradenitis suppurativa and bacteriophage therapy
I began a general phage therapy as soon as I came across bacteriophages. It was not a hard decision to make especially since there were no risks that my body would face. The only bad outcome I may have to face is one I have faced in the past of the therapy simply not working.
I was unable to travel to the Eliava Institute at the time; however, I had a doctor who consulted my case with some of the doctors at the institute and a general treatment plan was suggested. It is not recommended to go into phage therapy blindly as I did, as it is best to have all the tests done prior to taking the bacteriophages in order for the specialists to determine which bacteriophages you need for your condition. Phage therapy is very personalized, however in my case I didn’t want to wait and was ready to try out a treatment based on the chance and statistics.
I have not been able to find a doctor that accepted to take swabs to analyze the contents of my flares, but it was decided that I had a high chance of having Staphylococcus in my flare up, as it is the most common type of bacteria found in infections. Surely after having a chronic condition for over 20 years there was more than just Staphylococcus present, however since I did not want to wait, I wanted to try my luck in eliminating the most common bacteria for the time being and at a later stage to run all the proper tests and deal with the other bacteria.
Bacteriophage intake and treatment progress
First week of treatment
The routine of phage intake was to take a glass of water with a 2-3% baking soda mix prior to drinking the bacteriophage. The phages were to be taken by the following course:
First 20 days: One bottle (10ml) of Staphylococcal Bacteriophage on one day & one bottle of PYO Bacteriophage one the following day and to continue for in the same routine for the following 18 days. I then had to stop for two weeks and repeat the cycle.
Nothing major happened during the first week of taking the combination of Staphylococcal Bacteriophage and the PYO Bacteriophage. The only 2 things that I felt different was the pain decrease of the flare ups I had at the moment and an itching sensation of the site where my very first flare appeared back when I was 8 years old.
Month 1 to Month 3
In the period of my first 3 months of taking phages, I had no new flare ups and the pain levels of the existing flares decreased massively, to a point where there was barely any pain. The duration of the flares also decreased from months and weeks to days. The flares stopped being hot to the touch and by month 3 many stopped opening. The size also was an average of an almond, with the occasional walnut sized flare.
Month 3 to Month 6
With an appearance of a flare around month 4, I began taking a booster round of treatment. The treatment plan was the same as the first; for 20 days to take 10 bottle of Staphylococcal Bacteriophage and the PYO Bacteriophage. In the period of 3 to 6 months I had an approximate of 5 individual flare ups which occurred individually and lasted for a few days. These flare ups were also different in structure as they no longer opened, were most solid and contained. This was opposed to the multiple flare up (from 3 to 5 on average) that I would have normally had prior to treatment, which lasted for week and months.
Month 6 to Month 12
Once I hit the 6-month period of phage intake, I noticed that I had the appearance of 2 isolated flares at one time. Although their duration was within days, they were practically painless and only one of them opened. It was evident that the phages I was taking had reached a point of getting the Staphylococcus bacteria under control, but other bacteria were present which needed to be address. I changed around my routine of phage intake. I continued to take the phages orally, however I changed the intake from a soda water mix prior to phage intake, to taking the bacteriophages either half an hour prior to food intake or 2 hours after food intake. I also began applying a bandage onto the flare that was open. This allowed the bacteriophages to enter the inflamed site directly.
I still was unable to travel to the institute, which is when it was decided to start finding options to work on the underlying issue of Hidradenitis suppurativa, my immune system. At this point I changed my routine by following the Intermittent fasting 16/8 routine.
Year 1 to Year 1 and Month 6
The next 6 months my phage therapy was changed by prioritizing direct bandage application to oral intake. In these 6 months I had the appearance of 3 flare ups, of which 1 never opened, 1 appeared, opened and faded within 36 hours and the last appeared, opened after being exposed to hot water and faded in 2 days. In all 3 occasion, once a flare up appeared, after taking a hot shower, a bandage with the phages was applied and kept on the flare to up to 30 minutes, in the morning and evening. Except for the occasion for the second flare up. When the second flare up appeared, the Staphylococcal bacteriophages were also being taken orally for a period of a week.
The flare ups were no larger than an almond and painless. One very noticeable difference in this period was that my lymph nodes began to become enlarged prior to the appearance of these few flares. They have not only gotten a little bigger but expanded immensely. My body stopped reacting to the appearance of flares for many years now, but in this last period, till today, my body seems to have been once again recognizing infection and is learning to fight back.
As for the old flare up areas, they now have a small white circle. The contents seemed to be the remains of the area that contained the infection and from where the inflammation had manifested. Since the skin regenerates at quite a fast rate, this space that was once deep in the skin and has now surface. From time to time, they surface and get cleared off, similar to a pimple or hair ingrowth. They are completely painless. Many of the old scares are also less deep and are not flattened
At the moment, I am in Month 19 and plan to go to the Eliava Institute in the coming months. At the institute I will undergo the proper process of getting a full checkup and analyses of what bacteria is currently manifesting in my body, which may be the cause of the very few occasional flare ups. Overall, I feel a huge difference between the state of my HS prior to phage treatment, however I look forward to get specific tests done to focus on getting an understanding what is currently happening inside my system.
Hidradenitis Suppurativa support group:
Hidradenitis Suppurativa Support – Unique Fun Facts
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HS & Phage therapy support group:
Hidradenitis Suppurativa Phage Therapy Resource
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