My dermatologist suggested Doxycycline to help with my boils since there been there for a while without any signs of it going away or draining.
I do have some issues with it.
I have sleep issues (mainly due to mental health) and for a little over two weeks I find myself getting super tired in the morning that I need to nap for an hour or two. I also go to bed early; it depends but usually around or after 8pm.
My dermatologist wants me to sit up for an hour after taking Doxycycline. I have taken the med in the past for a skin rash (due to Intertrigo) and I waited 30 minutes before laying down. I haven't asked my dermatologist or a pharmacist yet if it's still okay to do 30 minutes.
Secondly, there's my diet. It's important to take Doxycyline with food but you need to avoid Dairy products and I believe other foods that contain (or high in?) Calcium, Magnesium, and Iron. I struggling to trying to figure out what to eat for Breakfast and Dinner. I don't want to change my diet. I think it would be easier to take Doxycycline 2-3 hours however that's when I usually get tired.
I'm not sure how long it will take for my sleepiness issue to improve.

Late last year I ended up on 5 different antibiotics within 3.5 months, one was a 2 week course of doxycycline. I developed “the ick” for meats and vegetables- even though I liked the taste of the food, something about the texture or something made it disgusting to me. I would use water to swallow partially chewed food like pills, just to get the food in me, and tried not to gag.
This improved a lot over time after I went off the antibiotics and went on ProBiota HistaminX*, and found one kind of yogurt with cultures that I could tolerate (I have dairy allergy and histamine intolerance from MCAS).
The ick never completely went away. Then it started getting worse again. Now eating meat and veg is awful again- and I’m diabetic so that is most of my diet. I like the taste, I want to enjoy it, but I’m fighting disgust the whole time.
Is there any particular probiotic strains that might be able to help me? I think I did some serious damage to my microbiome. I found out recently I’m now deficient in vitamin k1, which is rare because we have bacteria that make it in our guts. But sometimes after multiple courses of antibiotics it can be wiped out.
Can I fix this mess? I eat loads of fiber, but I can’t eat most aged or fermented foods, or any dairy. Supplements are best since I have so many reactions to foods due to the MCAS. Thanks!
*ProBiota HistaminX Probiotic Blend: Bifidobacterium infantis Bifidobacterium bifidum Bifidobacterium longum Bifidobacterium lactisz Lactobacillus salivarius Lactobacillus plantarum Bifidobacterium breve Total cultures 10 Billion CFU

Dealing with gut dysbiosis/leaky gut, acne, chronic fatigue, food intolerances/sensitivities, unfinished bowel movements,
Hello everyone, I have previously posted a thread on my gut issues. I’m keeping it because I’ve had some very useful comments.
I wanted to create a new post and easily break down everything I have done and what I am doing to make it easier to read and understand.
I am seeking any and all advice, everyone is so different in healing but can have similar symptoms
I’ve been struggling for about a year now.

• I took accutane for 5 months over a year ago which cleared my acne
• My acne came back after 6 months
• After my acne came back I started experiencing major bloating and gas, I don’t remember my stools.
• I would eat at Korean bbq a lot which isn’t good for your gut!
  
• Started to change my eating habits, have healthier alternatives
  
• Started to incorporate brown rice, quinoa, lots of raw veggies, siete chips, simple mills crackers and cookies, poppi, ollipop, plantain chips
  
• Cut out eggs, gluten & dairy
  
• Dealing with stomach pain and bloating constantly
  
• Took gas-x
  
• Something felt off and I found out I had bacterial infection for a while, got put on doxycycline for one week
  

This Is when everything changed

• I ate more brown rice, quinoa, oatmeal, 80/20 beef, cooked and raw veggies, coconut aminos, siete chips, simple mills snacks, chicken, salmon, kimchi, coconut milk, coconut flour
• Didn’t realize how hard my gut was working to digest these foods which were only furthering my damage
• Extremely loose stools
• Terrible cystic painful acne
• Extremely painful periods
• Stopped working out due to not being Able to eat

I started cutting out grains as well. - At this point im dairy free, egg free, grain free, gluten free, sugar free - I ate only steamed sweet potatoes, spinach, chicken, ground beef, salmon, soups w added coconut milk, cassava chips/ cassava flou tapioca flour for tuna patties, cooked carrots, - Acne still worsening, starting to get gassier - Needing to poop after every meal and running to the bathroom - Bloating
Fast forward from January-march

• LOW FODMAP, dairy free, egg free, grain free, gluten free, sugar free, paleo, AIP mixed diet
• Strictly eating bone broth, chicken, fish, red meat, steamed sweet potatoes, carrots, ground turkey, turkey bacon, ground chicken, siete chips, sweet potato chips
• Taking sacchromyces boullardi which started to bulk up my stools
• Started taking slippery elm
• Quinoa in stool

Early march - Sweet potatoes and butternut squash in low fodmap quantities started causing discomfort - Fully cut out veggies - Cut out 80/20 beef (causing bad acne) - Not running to the bathroom but having unfinished bowel movements, boating, brain fog, fatigue - Still taking sacchromyces boullardi (life-saver), slippery elm
Mid-end of march - Low fodmap, aip, paleo, lectin free - Had to cut everything out due to too much digestive discomfort, gas and bloating - Only eating steamed sweet potatoes and protein, - Occasional spinach - Same supplements April to now - Started GAPS diet but egg yolks caused discomfort, bone broth was fine, started to have less bowel movements - Went through maybe a die off? Fevers, headache, chills, night sweats, brain fog, fatigue - Got past this stage now I’m just hungry and stressed because I need to put weight on - Worried about caloric deficit, not enough diversity but everytime I introduce veggies or fruits in small amounts I get discomfort - Kimchi or sauerkraut cause issues - I stay away from raw veggies, major gas and bloating - Even one Brussel sprout caused bloating - Tried some digestive bitters, can’t tell if its doing anything - Digestive enzymes with betaine and pepsin - Slippery elm and sacchromyces boullardi - PROBIOTICS CAUSE MAJOR DISCOMFORT EVERYTIME I TRY - Taking vitamin d3+k2 in a kids liquid form - no discomfort - seems to help - Eating lots of carrots, overate on my birthday the past week so I have been struggling again - Added onion to flavor my broth (big mistake had a flare) - Barely eating my veggies because I can’t tolerate them but I want to eat cooked veggies - No lectins, no nuts, tried zucchini caused gas and bloating - Garlic infused olive oil caused issues (homemade ) - Cocoyo probiotic yogurt not causing issues - Too much coconut oil will cause diarrhea - Spaghetti squash and carrots were good but then I had to recently cut them out after my onion fare up - I make bone broth with bone marrow, oxtail, whole chicken, chicken feet (causes no issues) - Acne has been quite painful lately, mainly around cheeks, around mouth and chin - Period was like one week last cycle which is extremely uncommon of me - I’m carnivore right now after my yolk incident - Carnivore isn’t sustainable - I started working out again which is helping - Less brain fog - Less gas but if I eat the wrong thing or introduce new food I’ll get gassy
SUPPLEMENTS I TRIED AND DID NOT WORK (bad side effects) - probiotics (bad bloating/gas/upset stomach, pain) - Magnesium glycinate - L-glutamine - terrible bloating - Dandelion root - Marshmallow root - Vitamin d3+k2 in capsule form , liquid works for me - Zinc - I am considering a ginger and artichoke root supplement, not sure though
STOOL TESTS - Calprotectin, extremely elevated, tested a week later, lowered so my doctor said I can’t be referred to gastroenterology - Negative for candida overgrowth - Negative for celiac - Negative for Crohn’s disease - Negative for h pylori and parasites
OVERALL: I’m scared to eat now. I’ve developed a bad relationship with food because I can’t heal with it, my symptoms get worse. GAPS was helping a lot but I’m scared to add dairy since it’s been years and yolks just aren’t tolerated by my stomach at the moment. Recently I ate two tablespoons of coconut oil as a snack, felt fine. Added 1 tbsp of coconut oil to broth with egg yolk and immediately ran to the bathroom.
I’m not sure what to eat and yes i am hungry. I’m always bloated and feel full with unfinished bowel movements. I have 1-2 bowel movements a day. I want to put weight on but having unfinished bowel movements, feeling like I need to go but can’t, can’t tolerate any foods so how can I eat and grow is getting depressing. I’m so stressed and depressed which doesn’t help but I’m stuck in a cycle of “this is working” for a few days and then i have a reaction when I introduce something. I am a female so OMAD is not sustainable for my hormones.
I’m struggling, my doctors aren’t helping. Any advice/recommendations would help. Yes, I should get more testing done however it’s very pricey and my health insurance doesn’t cover a lot of testing. I was told my calprotectin levels are low now so my body is fighting whatever I had. This is definitely not true, I can’t digest or tolerate ANYTHING. It’s a ridiculous comment from my doctor….
THANK YOU SO MUCH FOR READING ALL THIS IF YOU DID <3

Getting bloodwork done soon, 30M, whole foods plant based diet, have done a few rounds of doxycycline for acne over the last few years, I take probiotics and eat a ton of veggies now, I supplement zinc and B12 regularly, am normally physically active but I wasn't able to workout for 6 months due to injury.
I have had mild to moderate but persistent acne since 17. Dropping dairy and sugar helped a lot.
I noticed that if I take 4-6 packets of Emergen-C daily plus 30-40mg zinc, my facial skin does really well. 95% clear. I am trying to figure out what exactly in the Emergen-C is helping because I don't want to be taking that much. Chromium?
Currently taking just 1000mg of vitamin C daily with my zinc but it's not as effective.
Sugar and coffee and white bread/rice tend to make me breakout still regardless of what supplements I'm taking.
If I sweat at all while wearing a shirt I break out on my chest, torso, shoulders and back. If I use a backpack I'll get cystic acne where the straps touch.
My face gets clogged easily so I can't leave moisturizers on for too long.
If I workout after not having done so for a long time, I'll get acne on that particular muscle.
Supplementing D3 seems to help me sleep better but I haven't been tracking this long enough to confirm.
I have had insomnia a lot lately but I think it's due to not working out (I had insomnia as a teen and it went away when I started weightlifting).
My skin has been scarring quite easily lately. I spent a lot of time in the sun my whole life and barely used sunscreen so it may be due to this. I also dropped my calories quite a bit the last year and have lost some weight due to this.

27f newly diagnosed after two months of the same two boils coming back again and again. Never had this happen before. It’s just out of the blue. Now almost 3 months of open wounds on my groin. I was in denial for a long time. Reading about HS scared the shit out of me. And I just refused to accept it. And now I have and I’m trying to get my inflammation under control first. I’ve been really good about cutting out gluten and sugar but dairy is so hard for me. I have a Greek yogurt every single morning bc it’s pretty much the only thing I can eat (eating disorder and that’s a whole other convo). Just got some turmeric/curcumin/ginger capsules. Sarsaparilla capsules. Fish oil. Regular vitamins and I’m also still taking doxycycline my dermatologist gave me. I have another appt with them in a few weeks and I want to go in having tried some things to see if I can get it under control myself before they prescribe me any other medication.
Anything else I can do to reduce inflammation? I’m pretty good on getting them to pop. Clindamycine gel or whatever it’s called, castor oil, Vicks, heating pad all work pretty good for me usually get them draining within a day.

Height: 5’10 Weight: 193 lbs Age: 30 Gender: Male
Simplified Symptoms list: Experiencing a lot of symptoms, but here is a list:
1. Visual disturbances (blurry vision, visual snow, afterimages, flickering vision, can see pressure phosphenes in vision that come in from the side, closed eye hallucinations, floaters, eyes cross at times, Trails, Entoptic phenomena (can see sparks flying in the sky that are different from floaters), right eye twitching, can see vein pulsing in left eye when I am walking or exercising, light sensitivity) 2. Tinnitus (both regular and pulsatile on right side) 3. Extremely dry, gritty eyes after waking up 4. Sound sensitivity 5. Internal vibrations (especially after waking up from sleeping, or when eating something really carby like pizza) 6. Creaky extremities, crunchy hands that can lock up sometimes if I am playing the guitar or if I am gripping grocery bags for 5 minutes. 7. Muscle weakness and Droopy eyelids 8. Moments of visual/auditory hallucinations only when waking up from sleeping or falling asleep 9. Muscle twitches 10. Blood feels like it is running towards my hands when standing up and putting arms down by waist (bier spots, maybe?). Becomes splotchy. Goes away when I have my arms up. 11. Watery sensations, especially after eating. If I put even mild pressure on my arms or legs, I get a cold sensation back, maybe poor circulation? 12. Blood rushes to head sometimes when I stand up 13. Body jerks me awake some times (this has gotten less over the four years since it started but it still happens from time to time) 14. Notice burning, inflamed eyes after I eat or drink (food sensitivities). Lot of my symptoms change with food, will describe below. 15. Extreme dryness in hands after shower (mostly hot water) and washing hands. Hands look very wrinkled and pruney right after. Left side more affected than right.
Family History: Mom: Diabetes, Breast Cancer Dad: Diabetes, Prostate Cancer, High Blood Pressure Grandma (Father’s side): Low thyroid issues
Health Background: Currently diagnosed as Prediabetic (A1C 5.7%). Have lost 30 pounds to help this. Wisdom teeth surgery, Tonsillectomy in 2004. Allergic to dust and pollen. No other issues until all of these issues starting happening in 2020.
Background of symptoms: Symptoms began in November 2020. My first symptom was dry eyes, especially in my left eye. When I would wake up, it would feel like sand was stuck in my eye (gritty feeling). This went on until I ended up getting a corneal scratch in February 2021. Doc gave me salt drops for my eyes, which made it better. Got the vaccine in April, May 2021, had some weird symptoms for 3-4 days following each shot but back to normal after. In around June 2021, I got a corneal ulcer in my left eye from the constant dryness. Opthalmologist gave me doxycycline and Lotemax steroid drops and antibiotic eye drops for it and to treat the dry eyes. A day or couple days after I started getting tinnitus on my right side. A week later, after bowel movement, I started noticing a bunch of visual disturbances (static in vision, afterimages, etc.). From then on, I started getting all the symptoms mentioned before, including muscle twitches, pulsatile tinnitus, etc. When I was almost about to fall asleep, my body would instantly wake me up and it felt as if my breath had stopped for a millisecond. As the months went by, my vision also started to get more disturbances. Everything looked sharper and more glarey than it should. Also, I started to get vibrating vision too, where if I look at a block of text, I could see the words move. Started seeing a wave effect. Noticed that this barely happens if I close and use one eye. Another disturbance that I get is that when I close my eyes, I sometimes notice two tiny balls of light that move towards my nose (in the left eye, the ball moves from the left side of eye to my nose and in the right eye, the ball moves from the right side of my eye to my nose). Closest that anything has come to describe it is “pressure phosphenes.”
Here is an accurate description of some of my visual disturbances:
Glare: http://VisionSimulations.com/daytimeglare.htm?backgroundBlur=19&spreadOfGlare=4&opacityOfGlare=100
Static:
http://VisionSimulations.com/visual-snow.htm?background=office1.png&density=0.79&speed=10&grainsize=1
Ghosting:
http://VisionSimulations.com/simple-ghosting.htm?background=office1.png&ghostX=10&ghostY=10&ghostOpacity=8
Then I started noticing a lot more cardiovascular issues in Feb 2022. Heart rate would spike up after standing up from sitting down. Also noticed that my tinnitus behaved differently when I was lying down. While my regular tinnitus is predominantly in my right ear, I would start hearing some of it in my left ear if I was sleeping on my left side. And sometimes, it would actually DROP 30%-50% if I was sleeping on my right side. which is strange. Also noticed that I was getting watery sensations in my ears too, especially when I was lying down on the side my bed. I also notice that my eyes crossed more as well, especially in the first hour after I get off my bed and sit on my computer chair. The cold sensations happen a lot more after I eat, so I am assuming it’s from poor circulation but I am not sure.
Around the same time, I also started getting splotchy spots in my hands when I kept them below my waist. It felt like blood was moving down to my hands. Raising them up below the waist would stop the pooling and the spots go away. When I drop my hands down, I notice that my fingers start twitching more too as the blood moves into my hands. My testicles would also start to tingle as well, but not constantly. I get waves of tingling in my testicles for 1-2 seconds and then it goes away for a while.
I started getting internal vibrations in my body as well, like a cell phone is stuck in my body. This happens mostly when I wake up from sleeping initially, and then goes away as soon as I am awake. My muscles started twitching a lot more, started getting more burning/cold sensations around my body, and I noticed my hands were very creaky as well. If I close my hands into a fist and slowly open them, they do not feel smooth at all. The feeling is similar to that of a door creaking. I noticed that this is also happening all around my body, not only in my fingers. I just don't notice it as much as I do in my fingers. Also noticed some loss of muscle in my hands. They're more pruney looking. Also have some weird unexplained yellowish/oorange spots on my hands. Confirmed that it's not jaundice but doctors dont know what it is either.
Here are some images of my hands. This is what my hand looks like on a regular day.
https://postimg.cc/qNVX3jXz
https://postimg.cc/p5j5VMSk
It gets better if I have electrolytes (which I started in the last week). Gets worse after loose bowel movement. Noticed it got WAY worse when I was prepping for my colonoscopy by drinking only liquids and not eating any solid food (lot more pruney and wrinkled).
Similarly, my left eye is droopy (left side in general is more droopy):
https://postimg.cc/tYHN1Bz7
Also, this is what my hand looks like if I have my hand down at times (splotchy, bier spots, orangeish lines):
https://postimg.cc/rdpd0rbD
In late 2022 is when I started noticing a vein pulsing in the vision of my left eye. This normally happens when I am standing up or walking, and then goes away after 3-4 seconds of pulsing. Around the same time, I started noticing that I was getting dizzy when sitting down. Similar to the sensation of sitting on a boat in water. My eyes started twitching more as well and my joints were a lot more clicky. Another interesting thing that I have noticed is that I've started getting weird hallucinations when I am sleeping or drifting off into sleep. For example, I start hearing random noises as soon as I drift into sleep sometimes, which causes me to wake up instantly. Additionally, when I am starting to wake up from sleep, sometimes I can literally see scenes of a movie or a tv show or something random while my eyes are closed. It's like I'm watching a movie with my eyes closed, it's by far the strangest thing I've ever experienced. This happens more if I have bowel movement and then try to go to sleep or if I have loose bowel movement the day of.
In early 2023, I started getting reactive hyperglycemia as well. I'm suspecting this was happening to me a bit in 2022 as well. This led to a lot of fatigue after eating, but I realized the fatigue wasnt as bad if I ate less carbs and smaller portions. Also started noticing that my bladder control was weaker too. When I was urinating, I noticed more dribbling. During this year, one doctor also told me it could be Lyme disease, so I tried to go on intravenous antibiotics for 3 months but they did not help me.
I also started to get food intolerances slowly. For example, my left eye starts getting inflamed when I drink coffee. Also, sometimes dairy causes burning/stinging in my eyes. Multiple other foods started to cause reactions as well, including increased muscle twitches, tinnitus, light sensitivity, burning/watery sensations, fatigue, dizziness. Went gluten free and dairy free for a while, did not really help. Also, I noticed that one day I would get a reaction from eating oranges, and the next day I would not get any reaction from eating oranges. Same thing happened with a bunch of other fruits and foods as well.
Tests/Results:
I can provide tests for anything upon request if I have them. My tests are basically 99% normal so far. Here is a quick summary of my medical journey:
I've been to over 25-30 doctors since this started. Most blood tests are normal. My immunologist saw that I have high IL-6, which is an inflammatory marker. He thinks that maybe I can try an immunosuppressive drug (Rituxan), but my other doctors have told me that this is kind of hardcore so I'm not sure if I want to do that yet.
My interventional neuroradiologist took an MRA/MRV of my head. He noticed I have stenosis on the right side (which is also where my pulsatile tinnitus is). However my pulsatile tinnitus is very infrequent, and does not cause me much discomfort as much as my regular tinnitus. He says that the stenosis is ONLY causing the pulsatile tinnitus, not any other symptoms that I have. He told me to revisit if the pulsatile tinnitus gets extremely bothersome, and then he'll think about stenting.
All my other rheumatology/neurological blood tests are normal. Neurological (EEG, etc.) tests are also normal. Worked up for Myasthenia Gravis but also negative for that. Tried dose of Mestinon, it made me worse temporarily. Don't have Sjogren's either according to bloodwork.
Endocrinology blood tests are also mostly normal, including thyroid. A1C is at 5.9% last we checked, but the last couple years it was at 5.4% as all of this was happening (it’s always been between 5.0% and 5.4%). I’ve been losing weight to keep it under control as I have diabetes in my family history. Only other thing is that I have low Ferritin, but my doctor said that this is okay as my Iron and hemoglobin are normal. I have done an iron infusion recently as well, but it did not help. We are going to monitor to see if my Ferritin drops in a month or so.
Endo also noticed I have a benign pituitary tumor in my brain. I went to a neurosurgeon to get his consultation for this and he said there’s nothing to worry about, it is benign and is not causing my symptoms. It just needs to be monitored every year, so we will do a scan every year.
Did a colonoscopy and endoscopy to check for malabsorption, celiac, crohn’s etc. I am all clear on that front too.
Some quirks, possible clues, and interesting points that I’ve noticed regarding my symptoms:
1. My constant blurry vision gets 70-80% better at times when I have a sugary drink. Goes back to being blurry after about 5-10 minutes. This is the only thing that makes my blurry vision better. Droopy eyelids also lift up a bit when I have a sugary drink or after I eat a carby meal. Also, I noticed that the tear production in my eye increases especially when I have sugary desserts. And if I have a pretty carby meal(s) day the day before, I generally wake up with less irritation in my eyes. Sweating all over my body also increases when I eat or drink something sugary. At all other times, my body is extremely dry. I also get a prickly feeling in my back sometimes as I am drinking the sugary drink. All in all, my symptoms are *mostly* worse when my blood sugar is normal, but better at higher sugars. Either that or carbs just help some of my symptoms and I am not sure if my body is having trouble processing them?
2. My visual snow generally gets worse after eating food or going for a walk/doing exercise. My tinnitus gets betteworse after food as well.
3. My bladder control/dribbling is worse after going for a walk/doing exercise.
4. When I took an iron supplement a couple months ago, I was getting loose bowel movements every couple of days. After the loose bowel movement, I noticed that most of my issues would be way worse for the next couple of days (muscle twitches, static in vision, tinnitus worse, hallucinations would reappear) -- I’m assuming dehydration/fluid balance has a part to play in all this too.
5. Also, one day after I woke up and took an iron supplement on an empty stomach, I got a migraine with aura for the first time in my life. Seemed to mostly affect my left side but I did experience a kaleidoscope sort of vision and vision loss for around 10-15 minutes. Didn’t happen again after.
6. Bowel movement causes dizziness (boat like sensation). I am assuming this is because the Vagus nerve is affected. Get same type of dizziness when I sit up from laying down on my bed or after I eat food.
7. Bowel movement also (even if not loose) generally makes my vision worse. Right after, my vision gets pretty blurry and I generally feel weaker. There have been times where my eyesight has been decent after I wake up (after I have a big, somewhat carby dinner the night before), but then it gets noticeably worse after bowel movement in the morning (can possibly be connected to point #4, not sure).
8. My neurological symptoms most closely match the symptoms of those that have had B6 toxicity (mostly triggered by a dehydration event), those that have intracranial pressure (don’t have headaches at all, doctors don’t think this is it), and those that have mold toxicity (don’t have mold in my house).
9. The inflammation in my left eye gets worse after I drink coffee, but also I noticed that it would consistently become inflamed when I tried Betaine HCL supplements specifically. The more Betaine HCL supplements I took at a time, the more inflammation I was getting. Not sure what that could mean, but something isn’t right with my stomach and acid maybe.
That’s all I can write for now, I tried to explain everything as best as I could. This thing has been ruining my life for the past 4 years, and I need help. Feel free to request or suggest anything you may think can possibly lead me in the right direction, as this has taken over my life and it's really difficult to hold a job. Thanks

I have been to hell and back with this bacteria. Name the co-infection, I probably had it. Not out of the woods with co-infections yet though.
The mental toll this bacteria has had on me is insane, the last 7 months have been both the best but worst months of my life. I have never been so anxious and uncomfortable, I was a virgin when all this started which made it worse as I had no understanding of what was happening. I still have symptoms, so I don't have full relief yet unfortunately. Waiting for my partners results to come back tomorrow. Once we get the all clear and this is all over I will probably cry so hard !!
​
My story:
August 2023: Virgin, unprotected oral sex with partner. Yeast infection & thin yellow discharge.
September & October 2023: Would test positive for BV every time my partner went down on me. The antibiotics would never clear the yellow thin discharge.
November 2023: My anxiety plummeted, not knowing why it wasn't gone. Assumed it was AV as it was yellow and did a course of antibiotics. The worst idea. I killed all my good bacteria, and actually gave myself AV. PLEASE TEST DON'T GUESS!! It will put you back I am now still with low levels of good bacteria.
November 2023: I tested positive high load of UU and UP through a microbiome test. Did 14 days doxycycline but MISTAKE I took dairy with it nearly every time as I had no idea, so I think it reduced its effectiveness significantly. Took 1g Azithromycin about 36-48h after the doxy. I only treated, my partner did not (we did not have any unprotected sex during this time including oral). Still had the same Ureaplasma yellow discharge after the course.
January 2024: Tested positive with a low load of just UU. Treated with 7 days doxycycline and 1g azithromycin. My partner took this course as well this time with no positive result. We get his PCR urine results tomorrow. We have not had any unprotected sex including oral since treatment.
​
Fingers crossed he will be negative, but if he is positive as I have done a different course than him... what treatment do we ask for? Note: his test results won't show the load, only detected or not.
​
I will come back to update on what his results say tomorrow.
​
Thank you to all that have replied to my posts and comments.
Remember, ureaplasma is only a bacteria, it can be easily treated, it is just unfortunate it doesn't have the protocols and attention it needs. Your body is built for healing and in due course it will. If you need any help PM me, I am unfortunately very knowledgable about the microbiome now 🤣
Sending healing to you x
​

I 22F in Australia have been dealing with acne for 9 years (since being 13). I have oily combination skin prone to redness. My first flare-up of acne was solely on my forehead 9 years ago (cystic, papules, etc.) which was resolved completely through using topical adapalene (Differin) gel. I spent a couple of years acne-free, before it flared up immensively when I was 15 in high school. This time, the acne was on my cheeks, chin and temple area, with forehead being clear (with occasional pimples).
Previous Treatment Attempts
In previous dermatology appointments, I had also been put on antibiotics. I had taken a course of Doxycycline tablets for 3 months. My skin has seen no flare up of acne during this course. Sadly, after the antibiotics were finished, my skin gradually became a little worse for a while, before returning to its usual acne-state.
I continued to use Differin gel 0.1%. It was vital for me to keep the break outs at bay. I tried stopping Differin, which only resulted in my acne flaring up way worse.
My blood tests results have always been ALL within normal ranges, including my hormones. That was why I was hesitant to try birth control. My cycle has always been stable and normal, and didn't want to mess around with that. But I tried birth control for 2 months, which messed up my cycle a bit without improving my acne. It was stressful dealing with spotting and mood swings while on BC, so I stopped.
I had tried professional acne extractions. LED blue-and-red light therapy. I regretted the extractions, which left me with deep acne scarring. Both of these treatments were high-cost, painful, and ineffective in the long run.
Lifestyle
My diet since highschool was rid of dairy products, in fear that they would trigger my acne. I was always very healthy in my diet, regular periods, 6-8 hours sleep religiously, no drinking or smoking. I always kept my skincare to a minimum of moisturiser and Differin gel.
Now As of now, my acne has been slightly better than when it was during high school, but never has it been clear. I have cystic acne on cheeks, temple and chin area. Textured skin on cheeks, with closed comedones, pastules and papules (which come and go in 3-4 days, only to frustratingly reappear again routinely). I have acne scars. Only my forehead is the clearest compared to the rest of my face.
I want to feel confident enough in my skin to leave the house without covering my acne in makeup. Or checking my skin for new pimples being the first thing I do every morning when I wake up.
Accutane
I have been suggested on Accutane by dermatologists. I have never committed to starting it. The horror stories, the Purge, side effects, the intense dry skin I've reviewed on many social media platforms in the past always scared me off it.
However, now, I have booked my dermatology appointment 26th next month to tell my dermatologist that I am open to trying Accutane.
I've heard it takes a whole month for iPledge/blood tests to be confirmed to the dermatology--if true, I'd have to wait at least 2 months before I can start :(. Can anybody confirm/give any tips about that?
For those who had Accutane, did antihistamines help with your purge at all? Did taking Omega-3 supplements (i.e. fish oil) help with dryness?
What dosage did you start on? I heard positive experiences of people going on low-dose Accutane to minimise side-effects (with a longer overall course). I only weigh around 46kg, so would that be something worth pursuing?

Please skip to the last paragraph for my query.
A bit of personal background, I think I am having this bout of adult acne in my late 20s. I have been having acne almost all over my face since 27, I am 28 now. I used to have a bit of fungal acne before and was prescribed Doxycycline which helped a lot. After that I took quite a few rounds of Doxy every time the acne came back, and it ruined my gut health. Now the acne is consistent and worse than ever. My derm suggested tests for hormonal changes (I have PCOS). But I have decided not to take any oral medicines as my digestive system is in shambles and I have to choose between gut and skin. Hormonal meds don't suit me too as they give me nausea and other ill effects due to which I feel like sitting in the loo all day. Leaving dairy for a few weeks didn't work out, so I added it again to my diet. My last option is using topicals and waiting for the acne to go away on its own. When this phase of acne began, it looked mostly cystic but now it looks like fungal acne. I am observing changes in my menstruation cycles after I took Clomid sometime ago. I use a SA facewash daily, a Clindamycin + Nicotinamide gel in the AM, Deriva BPO in the PM and sometimes leave in BP cream overnight.
Did any of you have such adult acne in your late 20s which lasted years but then eventually went away on its own?

My 16 year old domestic, short haired, black cat has hyperthyroidism. Last seen by a vet in early February and full senior blood panel showed no issues with thyroid and current treatment of 5mg tapazole, twice daily working. Fourth month of Solensia and responding well. Early signs of kidney disease noted with a recommendation that he begin prescribed food. Lungs and heart both sounded fine. He has had a cough at times in the past but we chalked it up to him aspirating some of his whiskas cat milk. (Not real dairy). A week after the vet visit he had a week long illness with some coughing, lack of appetite and lethargy. No vaccinations at vet visit, but many pets had been seen in the make shift clinic at our community Center that day. Gave very small dose of metacam (pulled to 2.5 lbs mark) and kept humidifier on. He recovered such that when he had his March dose of Solensia, he had a zoomie for the first time in years! Four days ago he started to cough again, showed signs of lethargy, started open mouth breathing. (I know how bad that is) respiratory rate about 24/minute. Vetster visit we got a script for doxycycline but to date have only administered three doses. He normally pills well but he struggled with the last dose. He is still able to get to water fountain and is drinking lots. Eaten each day as well. Using the litter box on his own but collapsing once he leaves it. Last night we were given a script for lasix. I’ve just given it to him 30 mins ago. He is struggling. I have no access to oxygen. The closest vet is either a minimum $1500 plane ride with him in cargo or a 5 hour train voyage followed by a night in a hotel then an hour long drive to a vet. I can’t do that to him. If he responds to the lasix, we are postponing the inevitable.
I am legitimately asking how to safely euthanize my cat at home. We can’t take him to a vet without hurting him more and potentially making his last hours nothing but fear. I take care of my cat. I love him. Watching him struggle to breathe and still try to get up to follow me to another room is breaking my heart. Please help.

Introduction

This will be a long post and I will attempt to break it down into digestible sections. I am very grateful for you taking the time to read my story and potentially provide whatever help you can. I am based in Seattle and starting my own business so I don't have access to health insurance unfortunately, but when I was working in a corporate environment I had the opportunity to see an ENT specialist and I'll share those findings below.

Sections:

1. Overall Health & Lifestyle
2. Daily Symptoms
3. Medical History
4. Conclusion

Overall Health & Lifestyle

I consider myself to be a very active individual. I'm engaging in some level of physical activity everyday:

• Monday, Wednesday, Friday - 90 min strenuous gym session
• Tuesday, Thursday, sometimes Saturday - 60 min of yoga
• Weekends - Hiking, Snowboarding, playing sports, long walks, etc.

I am currently on no medications, and my body fat% is between 15-20% I would say. I try to eat as healthy as I can, lots of whole foods and proteins, but I do occasionally indulge in sweets and "unhealthy food" here and there. I would say I'm probably eating fast food maybe once a week, but that is paired with a pretty high intensity activity such as snowboarding or going for a very long hike.
I try to exclude dairy from my regular diet as I'm fairly lactose and tolerant, and out of the 21 or so meals we eat in a week (7 days a week X 3 meals a day) I would say I maybe eat out 2 or 3 of those meals on a weekly basis.
I would say that I'm very emotionally stable, my mood is generally quite high, and I feel good about the place I am in life. Great friends, great partner, awesome living situation all around and I feel very blessed and grateful to be where I am in life.

Daily Symptoms

For as long as I can remember, I've had issues with breathing through my nose. Ever since my highschool cross country coach told me how you're supposed to breathe while running - in through the nose, out through the mouth, and me feeling like drowning whenever I tried and employ that technique, I knew something was off.
I snore quite explosively (many friends have shared this with me) and there have been certain instances where my friends/partner check to see if I'm still breathing because it sounds like I'm choking in my sleep or something. I'm 99% certain I have some level of sleep apnea because I never feel like I feel totally rested whenever I wake up. Of course I feel rested when I get like 10 hours of sleep in, but I feel like there's another level of "restfulness" that I have not had the opportunity to experience yet in life due to my sinuses.
Every morning, I'm coughing up phlegm to a certain degree and trying to clear out my pharynx/throat and everything feels quite clogged and backed up in the morning after waking up.
I have also been experiencing tonsil stones quite frequently over the past year and I read that that was a potential symptom of sinus issues.
Overall I feel like breathing through my nose definitely requires more deliberate effort than it should.

Medical History

My first time encountering this issue with doctors was actually with an orthodontist initially. They were doing a scan on my jaw to see if I needed to get some kind of surgery to move my jaw back to better fit my bite or something. And during the scan, the doctors said they saw a large blockage of some sort and they emphasized that they typically wouldn't be able to see something like that on the kind of scan they were doing.
This was back in high school and heaven knows what in the world I was thinking not getting it addressed at the time, but here we are.
Last year I had the opportunity to see an ENT specialist about my sinuses. He prescribed me the following routine for 3 weeks:
Twice a day (AM/PM)

• Doxycycline
• Mucinex DM
• Afrin Spray (3 days on, 3 days off)

This routine didn't really do much for me other than give me diarrhea for a couple of days. The doctor was very confident this would succeed, but it did not work.

Conclusion

What should I try and do from here on out? I've tried the nose tape, it sort of helps a little bit but not much. I haven't tried mouth taping yet, but I'm open to any potential solutions that are available based on my situation.
I've been trying to mitigate this issue by living a healthy lifestyle, but sleep is definitely something I would love to have a healthier relationship with. Thank you very much for reading through this, have a great day!

So… this is gonna be a long post.
The first time I had issues with folliculitis was about 3 years ago. It was all over my face, neck and chest, it spread fast, but didn’t (and still doesn’t) itch at all. I got a corticosteroid cream from my family doctor, which helped tremendously.
Unfortunately, it came back after a couple of weeks and I went to see a dermatologist. She diagnosed me with folliculitis instantly. Since she didn’t know what was causing it, she gave me clindamycin, which only made the folliculitis angrier - my skin was red, itchy, burning after the first use. Then we tried with a ketoconazole shampoo, but that didn’t help at all so I stopped using it. At that point, the folliculitis had spread all over my body - literally from head to toe in a matter of 7 days! Needless to say, I was terrified.
I finally found a cure in potassium permanganate baths which erased every trace of folliculitis from my body in about 3 days. However, two months ago my nightmare came back… and literally nothing has worked, not even potassium permanganate baths. It just kept getting worse!
My new dermatologist did a throat, nose and pustule swab culture, I had multiple blood tests done and checked my thyroid. I turned out to have a colony of staphylococcus aureus in my nose, but the pustule swab showed nothing. Nevertheless, my derm put me on 200mg doxycycline for 2 weeks and then 100mg for another 3 weeks, plus probiotics to maintain my gut health. He also gave me an erythromycin solution to apply to the pustules. I was so hopeful that we had finally found the cause AND cure for this. Unfortunately, while the solution did dry out some pustules, they just kept showing up and the doxy wasn’t showing any results, it didn’t even calm the inflammation down. The folliculitis was not budging from my skin at all!! Not even a tiny bit! I might as well have been drinking water..
I then tried the ketoconazole shampoo again. I was convinced it was helping for two days, but on the 3rd day I had a horrible flare up. I thought it damaged my moisture barrier so I immediately stopped everything and only used Uriage cica-gel for a while. I then switched to Panoxyl 10% and saw no results whatsoever after 10 days. I changed my diet (no gluten, no dairy, no sugar). I switched my shampoos, makeup and skincare to FA safe products. I only wear cotton and change my sheets every night. None of it has had any effect whatsoever on my folliculitis.
I’m considering going to a new dermatologist but I’m losing my mind (and actually crying typing this). Like I said, it doesn’t itch but it is a bit painful and i feel it on my skin… I’m mentally exhausted and unwell, tbh. I haven’t been able to focus on work, I stopped going places, missed my friends wedding, literally isolated myself and stopped touching my family members because I don’t know if this is contagious or not. At this point I’m tempted to just ask for a corticosteroid cream again and keep using it. I’m devastated that nothing has worked except for that…

This is going to be a long post, but hopefully, it’ll help other people who are currently struggling with folliculitis in potentially finding some relief.
I’m going to write my story using a timeline because I think it’ll make it easier to read and understand. Also, English is my second language, so I apologize for any mistakes I might have made.
It all started in April 2021 when, out of nowhere, I started developing cystic bumps in my beard. At that time, I didn’t know what folliculitis was and I just thought I had some crazy pimples that eventually would just go away so I didn’t think much of it and just went on with my life.
August 2021 - Several months went by and the “crazy pimples” not only did not go away but had gotten worse. My entire beard area was now inflamed, red, and painful. This is when I decided to see a dermatologist.
The outcome of my derm visit was that I had cystic acne. I never struggled with acne before, and it seemed a bit strange that at 25 years old, all of a sudden, I had developed this condition, but I trusted my dermatologist and based on his advice I was put on Accutane. For the first few weeks, I also took Prednisolone (a strong steroid) to calm down the inflammation and to help with the pain. Over the following year, my Accutane daily dosage increased gradually. At some point I reached 80mg a day, and that’s when I decided to stop taking it. The side effects were too hectic, and I was still dealing with new bumps daily; I remember that one day I was driving and all of a sudden, I had tunnel vision. I couldn’t see anything but a small area, and all the corners were like blacked out. I also started having what I can only describe as electric shocks down my legs every morning.
End of 2022 - One year of Accutane didn’t work. My skin was breaking out while taking this medication and kept breaking out after I stopped. I also started developing the same bumps on my scalp, not as many, but they were becoming more frequent with time passing, and obviously my morale was at record lows. By this point I had accepted the fact that I would have to live with whatever was going on with my skin and that there was no cure.
Beginning to mid-2023 - I finally found out about folliculitis and realized that I could be dealing with that and not “cystic acne”. I began to hyper-fixate on it, and I started researching everything I could to learn more about it. I started reading studies and papers, and I came to the conclusion that the only real way of finding a cure is to know what kind of pathogen is creating this infection. I then booked an appointment with another dermatologist, who confirmed that what I could be dealing with is bacterial folliculitis as this infection only seemed to affect the areas of my face covered in hairs and the rest of my skin was perfect. What follows is a swab test of the lesions and eventually a diagnosis of gram-negative folliculitis caused by Klebsiella Aerogenes. A different doctor had put me on a 2-week course of Ciprofloxacin, which permanently got rid of the bumps on my scalp but unfortunately didn’t eradicate the pathogen from my beard.
Mid to late 2023 - The pathogen was identified, antibiotic sensitivity was also performed, and I was then put on Bactrim indefinitely. One week into taking Bactrim I finally had relief for the first time in years. It felt amazing. While taking this antibiotic my skin was clear, the bald patches were filling up, and my confidence came back, up until I realized that for me it wasn’t an option to be on permanent antibiotics. I personally can’t justify that for something that isn’t life-threatening, so I was pretty much back to square one: if I take antibiotics I can keep this at bay but if I stop.. it’ll come back.
Beginning of 2024 to now - The next step for me was to address this condition more as a symptom. I started looking into how diet can affect the skin, what foods can trigger this condition, and exploring the possibility that my body is trying to tell me something’s wrong rather than thinking a random bacteria just decided one day that my beard was a good place to live in. That’s when I started to deep dive into various posts and articles about how a ketogenic/carnivore diet can help with inflammation and a whole array of other conditions, including folliculitis.
I personally never ended up trying either of those diets, but what I did instead was removing anything “inflammatory” from my diet. I never had a bad diet in itself; I exercise and eat carbs, protein, healthy fats, and I’ve always been toned and of a healthy weight. Being Italian, carbs like pasta, bread, etc have been part of my diet since I was born, but 3 years into this I decided that maybe it was a good idea to remove them to see if the situation improved at all.
Now - My dietary experiment started by removing the following:

• Wheat
  
• Dairy
  
• Added sugars and more in general foods with high sugar content like fruit/honey, etc.
  
• High GI foods/carbs, so foods that can spike your blood sugar like white rice, potatoes, etc.
  

Upon starting my new diet, I didn’t get to appreciate the benefit straight away as I was still taking antibiotics; the goal was to see if my skin would stay clear upon quitting them or if it would break out again like last time I quit the antibiotics but wasn’t on an elimination diet.
The day I started my new diet was also the day I stopped taking antibiotics, I was scared but also hopeful. The first thing I noticed is that a whole array of other smaller issues I had started to go away; I began to have more regular bowel movements, the bloating I’ve been experiencing for the past few years pretty much disappeared overnight, my permanently congested nose cleared significantly, the eye irritation I’d experience every day also went away, my skin also wasn’t breaking out, and for the first time in a long time, the redness I had in the affected area (even while I was taking antibiotics) began to dissipate.
Over the years, I became so familiar with this condition that I could almost anticipate when I would get a severe breakout. The skin would start by going red and kind of tender and then the bumps would start to appear. Seeing the redness going down and the tenderness with it was definitely relieving.
I’m still figuring out the best way to manage this condition. I’m also aware that just because I’m not breaking out now doesn’t mean I won’t break out in the future. Ever since I started the elimination diet I’ve reintroduced dairy (in small quantities as it’s been bothering me since forever so I don’t want to have too much regardless) and sugar (again, in moderation, as sugar isn’t good for you regardless of the skin).
One thing I must say is that the only time I slipped and had some cake (made with wheat flour), I experienced all of the symptoms again along with one new bump and redness/tenderness.
It is very much still trial and error for me. I went from trying to kill the bacteria to approaching this more as a broader issue, and so far, it’s been working! Hence why the title “fix your diet fix your skin”.
I believe that in some cases, folliculitis is more of an autoimmune condition, see it like as if your body is trying to tell you you’re doing something wrong. Most doctors, unfortunately, won’t have all the answers and will treat this condition with antibiotics/accutane/whatever and won’t deep dive into other reasons as to why you developed this condition in the first place.
General notes:

• Please keep in mind that my condition was caused by what I would describe as an immune system over-reaction to a gram negative pathogen; staph, fungal infections etc are a different thing.
  
• I don’t know how or why I got this condition in the first place. Some studies show that antibiotic usage can cause gram-negative folliculitis, and to be fair, I did take doxycycline for a bit before I started getting these bumps in my beard, but again, there’s no way to prove it.
  
• I’ve been tested for celiac, and even though I’m not celiac, I do have the celiac gene (from memory 30% of the population does). From my understanding, people with the inactive celiac gene shouldn’t eat gluten/wheat anyway, or they should at least limit it, but don’t quote me on that.
  
• I’ve tried several other ways to get rid of it over the years, including but not limited to: BP, bleach baths, isopropyl alcohol, chlorexidine, anti-fungal shampoos, various creams including ones with antibiotics in it, etc.
  
• The reason why gram-negative folliculitis is so persistent and hard to get rid of is because the bacteria creating the infection lives and breeds in the nose and travels down to then infect the follicles. By hiding in the nose, it can also escape antibiotics and start reinfecting once the antibiotics are stopped, hence why antibiotic therapy is considered suppressive and not curative in most cases.
  
• Accutane has shown to be the most effective cure, as it seems to be effective in rebalancing the flora on your skin. It didn’t work for me, but I also believe it can work for some people.
  
• If my dietary protocol doesn’t work, my next step is going to be laser, it seems to be effective in a lot of people.
  
• I think I will stick to my new diet regardless of my skin, as by switching to this diet I’ve gained so many other benefits, and my body is definitely thanking me for it.
  
• I’ve read of some people reporting that the covid vaccine has caused some autoimmune skin conditions on them. Again, there’s no way to prove that, so I won’t really address it, but make it of it what you wish.
  
• Different people react to different things, in my case so far it seems to be gluten/wheat. I don’t seem to react to anything else, some people might need to be on a stricter protocol than me some others might find relief in having smaller quantities of whatever could be bothering them; my best advice again is to listen to your body, it won’t do any harm to remove all the unhealthy and inflammatory stuff from your diet: best case scenario you’ll fix your folliculitis worst case scenario you won’t fix it but you’ll be healthier regardless.
  

I’m also going to attach some pictures with timestamps so you can visually see what I’ve been dealing with.
This is it, everyone. I know this post is really long, but I hope it’s gonna help someone out there struggling with the same condition as me. I’m going to try my best to reply to the comments and to keep this post updated.
Cheers 🙏

Just wanted to share some positive news on this sub since I know there are a lot of you struggling out there!
I tested positive for ureaplasma around Valentine’s Day lol and was prescribed a week of doxycycline (to be taken twice a day). I know that the Bible here says to follow up w azy, but my nyc gyno wouldn’t give it to me; said to try just doxy first and then we’d see.
I was nervous since there are a bunch of stories on here saying that doxy alone wouldn’t cut it, so I did everything in my power to make sure the antibiotics were at full strength. Took on an empty stomach (no meals two hours before or after pills), kept dairy to minimum, cut out caffeine and alcohol for the week, avoided foods high in zinc.
My noticeable symptoms were a pang-like feeling in the pelvic area, not all the time, but in spurts, pressure/bloating in urethra, not feeling like I could empty my bladder unless I really really sit there and relax, and radiating pain from my hip joint.
While on doxy, these symptoms definitely revved up on all fronts, and I have you guys to thank for keeping my anxiety in check— apparently that was all very normal.
And this morning I got my labcorp results back and they say I’m clear !!!! I’m stoked !! It’s possible, you guys!!
My only persisting symptom is the slight pain radiation, as well as slight issues with fully emptying bladder (which is def from unintentional muscle contraction down there, and also stems from me having a huge cyst so can’t fully attribute that to ureaplasma), otherwise I feel back to normal!
Keep hanging in there, ladies and gents! We can beat this!

Height: 5’10
Weight: 193 lbs Age: 30
Sex assigned at birth: Male
Geographic region(s) your ancestors are from: India Medications: Vitamin D
Simplified Symptoms list: Experiencing a lot of symptoms, but here is a list:
1. Visual disturbances (blurry vision, visual snow, afterimages, flickering vision, can see pressure phosphenes in vision that come in from the side, closed eye hallucinations, floaters, eyes cross at times, Trails, Entoptic phenomena (can see sparks flying in the sky that are different from floaters), right eye twitching, can see vein pulsing in left eye when I am walking or exercising, light sensitivity) 2. Tinnitus (both regular and pulsatile on right side) 3. Extremely dry, gritty eyes after waking up 4. Sound sensitivity 5. Internal vibrations (especially after waking up from sleeping, or when eating something really carby like pizza) 6. Creaky extremities, crunchy hands that can lock up sometimes if I am playing the guitar or if I am gripping grocery bags for 5 minutes. 7. Muscle weakness and Droopy eyelids 8. Moments of visual/auditory hallucinations only when waking up from sleeping or falling asleep 9. Muscle twitches 10. Blood feels like it is running towards my hands when standing up and putting arms down by waist (bier spots, maybe?). Becomes splotchy. Goes away when I have my arms up. 11. Watery sensations, especially after eating. If I put even mild pressure on my arms or legs, I get a cold sensation back, maybe poor circulation? 12. Blood rushes to head sometimes when I stand up 13. Body jerks me awake some times (this has gotten less over the four years since it started but it still happens from time to time) 14. Notice burning, inflamed eyes after I eat or drink (food sensitivities). Lot of my symptoms change with food, will describe below. 15. Extreme dryness in hands after shower (mostly hot water) and washing hands. Hands look very wrinkled and pruney right after. Left side more affected than right.
Family History: Mom: Diabetes, Breast Cancer Dad: Diabetes, Prostate Cancer, High Blood Pressure Grandma (Father’s side): Low thyroid issues
Health Background: Currently diagnosed as Prediabetic (A1C 5.7%). Have lost 30 pounds to help this. Wisdom teeth surgery, Tonsillectomy in 2004. Allergic to dust and pollen. No other issues until all of these issues starting happening in 2020.
Background of symptoms: Symptoms began in November 2020. My first symptom was dry eyes, especially in my left eye. When I would wake up, it would feel like sand was stuck in my eye (gritty feeling). This went on until I ended up getting a corneal scratch in February 2021. Doc gave me salt drops for my eyes, which made it better. Got the vaccine in April, May 2021, had some weird symptoms for 3-4 days following each shot but back to normal after. In around June 2021, I got a corneal ulcer in my left eye from the constant dryness. Opthalmologist gave me doxycycline and Lotemax steroid drops and antibiotic eye drops for it and to treat the dry eyes. A day or couple days after I started getting tinnitus on my right side. A week later, after bowel movement, I started noticing a bunch of visual disturbances (static in vision, afterimages, etc.). From then on, I started getting all the symptoms mentioned before, including muscle twitches, pulsatile tinnitus, etc. When I was almost about to fall asleep, my body would instantly wake me up and it felt as if my breath had stopped for a millisecond. As the months went by, my vision also started to get more disturbances. Everything looked sharper and more glarey than it should. Also, I started to get vibrating vision too, where if I look at a block of text, I could see the words move. Started seeing a wave effect. Noticed that this barely happens if I close and use one eye. Another disturbance that I get is that when I close my eyes, I sometimes notice two tiny balls of light that move towards my nose (in the left eye, the ball moves from the left side of eye to my nose and in the right eye, the ball moves from the right side of my eye to my nose). Closest that anything has come to describe it is “pressure phosphenes.”
Here is an accurate description of some of my visual disturbances:
Glare: http://VisionSimulations.com/daytimeglare.htm?backgroundBlur=19&spreadOfGlare=4&opacityOfGlare=100
Static:
http://VisionSimulations.com/visual-snow.htm?background=office1.png&density=0.79&speed=10&grainsize=1
Ghosting:
http://VisionSimulations.com/simple-ghosting.htm?background=office1.png&ghostX=10&ghostY=10&ghostOpacity=8
Then I started noticing a lot more cardiovascular issues in Feb 2022. Heart rate would spike up after standing up from sitting down. Also noticed that my tinnitus behaved differently when I was lying down. While my regular tinnitus is predominantly in my right ear, I would start hearing some of it in my left ear if I was sleeping on my left side. And sometimes, it would actually DROP 30%-50% if I was sleeping on my right side. which is strange. Also noticed that I was getting watery sensations in my ears too, especially when I was lying down on the side my bed. I also notice that my eyes crossed more as well, especially in the first hour after I get off my bed and sit on my computer chair. The cold sensations happen a lot more after I eat, so I am assuming it’s from poor circulation but I am not sure.
Around the same time, I also started getting splotchy spots in my hands when I kept them below my waist. It felt like blood was moving down to my hands. Raising them up below the waist would stop the pooling and the spots go away. When I drop my hands down, I notice that my fingers start twitching more too as the blood moves into my hands. My testicles would also start to tingle as well, but not constantly. I get waves of tingling in my testicles for 1-2 seconds and then it goes away for a while.
I started getting internal vibrations in my body as well, like a cell phone is stuck in my body. This happens mostly when I wake up from sleeping initially, and then goes away as soon as I am awake. My muscles started twitching a lot more, started getting more burning/cold sensations around my body, and I noticed my hands were very creaky as well. If I close my hands into a fist and slowly open them, they do not feel smooth at all. The feeling is similar to that of a door creaking. I noticed that this is also happening all around my body, not only in my fingers. I just don't notice it as much as I do in my fingers. Also noticed some loss of muscle in my hands. They're more pruney looking. Also have some weird unexplained yellowish/oorange spots on my hands. Confirmed that it's not jaundice but doctors dont know what it is either.
Here are some images of my hands. This is what my hand looks like on a regular day.
https://postimg.cc/qNVX3jXz
https://postimg.cc/p5j5VMSk
It gets better if I have electrolytes (which I started in the last week). Gets worse after loose bowel movement. Noticed it got WAY worse when I was prepping for my colonoscopy by drinking only liquids and not eating any solid food (lot more pruney and wrinkled).
Similarly, my left eye is droopy (left side in general is more droopy):
https://postimg.cc/tYHN1Bz7
Also, this is what my hand looks like if I have my hand down at times (splotchy, bier spots, orangeish lines):
https://postimg.cc/rdpd0rbD
In late 2022 is when I started noticing a vein pulsing in the vision of my left eye. This normally happens when I am standing up or walking, and then goes away after 3-4 seconds of pulsing. Around the same time, I started noticing that I was getting dizzy when sitting down. Similar to the sensation of sitting on a boat in water. My eyes started twitching more as well and my joints were a lot more clicky. Another interesting thing that I have noticed is that I've started getting weird hallucinations when I am sleeping or drifting off into sleep. For example, I start hearing random noises as soon as I drift into sleep sometimes, which causes me to wake up instantly. Additionally, when I am starting to wake up from sleep, sometimes I can literally see scenes of a movie or a tv show or something random while my eyes are closed. It's like I'm watching a movie with my eyes closed, it's by far the strangest thing I've ever experienced. This happens more if I have bowel movement and then try to go to sleep or if I have loose bowel movement the day of.
In early 2023, I started getting reactive hyperglycemia as well. I'm suspecting this was happening to me a bit in 2022 as well. This led to a lot of fatigue after eating, but I realized the fatigue wasnt as bad if I ate less carbs and smaller portions. Also started noticing that my bladder control was weaker too. When I was urinating, I noticed more dribbling. During this year, one doctor also told me it could be Lyme disease, so I tried to go on intravenous antibiotics for 3 months but they did not help me.
I also started to get food intolerances slowly. For example, my left eye starts getting inflamed when I drink coffee. Also, sometimes dairy causes burning/stinging in my eyes. Multiple other foods started to cause reactions as well, including increased muscle twitches, tinnitus, light sensitivity, burning/watery sensations, fatigue, dizziness. Went gluten free and dairy free for a while, did not really help. Also, I noticed that one day I would get a reaction from eating oranges, and the next day I would not get any reaction from eating oranges. Same thing happened with a bunch of other fruits and foods as well.
Tests/Results:
I can provide tests for anything upon request if I have them. My tests are basically 99% normal so far. Here is a quick summary of my medical journey:
I've been to over 25-30 doctors since this started. Most blood tests are normal. My immunologist saw that I have high IL-6, which is an inflammatory marker. He thinks that maybe I can try an immunosuppressive drug (Rituxan), but my other doctors have told me that this is kind of hardcore so I'm not sure if I want to do that yet.
My interventional neuroradiologist took an MRA/MRV of my head. He noticed I have stenosis on the right side (which is also where my pulsatile tinnitus is). However my pulsatile tinnitus is very infrequent, and does not cause me much discomfort as much as my regular tinnitus. He says that the stenosis is ONLY causing the pulsatile tinnitus, not any other symptoms that I have. He told me to revisit if the pulsatile tinnitus gets extremely bothersome, and then he'll think about stenting.
All my other rheumatology/neurological blood tests are normal. Neurological (EEG, etc.) tests are also normal. Worked up for Myasthenia Gravis but also negative for that. Tried dose of Mestinon, it made me worse temporarily. Don't have Sjogren's either according to bloodwork.
Endocrinology blood tests are also mostly normal, including thyroid. A1C is at 5.9% last we checked, but the last couple years it was at 5.4% as all of this was happening (it’s always been between 5.0% and 5.4%). I’ve been losing weight to keep it under control as I have diabetes in my family history. Only other thing is that I have low Ferritin, but my doctor said that this is okay as my Iron and hemoglobin are normal. I have done an iron infusion recently as well, but it did not help. We are going to monitor to see if my Ferritin drops in a month or so.
Endo also noticed I have a benign pituitary tumor in my brain. I went to a neurosurgeon to get his consultation for this and he said there’s nothing to worry about, it is benign and is not causing my symptoms. It just needs to be monitored every year, so we will do a scan every year.
Did a colonoscopy and endoscopy to check for malabsorption, celiac, crohn’s etc. I am all clear on that front too.
Some quirks, possible clues, and interesting points that I’ve noticed regarding my symptoms:
1. My constant blurry vision gets 70-80% better at times when I have a sugary drink. Goes back to being blurry after about 5-10 minutes. This is the only thing that makes my blurry vision better. Droopy eyelids also lift up a bit when I have a sugary drink or after I eat a carby meal. Also, I noticed that the tear production in my eye increases especially when I have sugary desserts. And if I have a pretty carby meal(s) day the day before, I generally wake up with less irritation in my eyes. Sweating all over my body also increases when I eat or drink something sugary. At all other times, my body is extremely dry. I also get a prickly feeling in my back sometimes as I am drinking the sugary drink. All in all, my symptoms are *mostly* worse when my blood sugar is normal, but better at higher sugars. Either that or carbs just help some of my symptoms and I am not sure if my body is having trouble processing them?
2. My visual snow generally gets worse after eating food or going for a walk/doing exercise. My tinnitus gets betteworse after food as well.
3. My bladder control/dribbling is worse after going for a walk/doing exercise.
4. When I took an iron supplement a couple months ago, I was getting loose bowel movements every couple of days. After the loose bowel movement, I noticed that most of my issues would be way worse for the next couple of days (muscle twitches, static in vision, tinnitus worse, hallucinations would reappear) -- I’m assuming dehydration/fluid balance has a part to play in all this too.
5. Also, one day after I woke up and took an iron supplement on an empty stomach, I got a migraine with aura for the first time in my life. Seemed to mostly affect my left side but I did experience a kaleidoscope sort of vision and vision loss for around 10-15 minutes. Didn’t happen again after.
6. Bowel movement causes dizziness (boat like sensation). I am assuming this is because the Vagus nerve is affected. Get same type of dizziness when I sit up from laying down on my bed or after I eat food.
7. Bowel movement also (even if not loose) generally makes my vision worse. Right after, my vision gets pretty blurry and I generally feel weaker. There have been times where my eyesight has been decent after I wake up (after I have a big, somewhat carby dinner the night before), but then it gets noticeably worse after bowel movement in the morning (can possibly be connected to point #4, not sure).
8. My neurological symptoms most closely match the symptoms of those that have had B6 toxicity (mostly triggered by a dehydration event), those that have intracranial pressure (don’t have headaches at all, doctors don’t think this is it), and those that have mold toxicity (don’t have mold in my house).
9. The inflammation in my left eye gets worse after I drink coffee, but also I noticed that it would consistently become inflamed when I tried Betaine HCL supplements specifically. The more Betaine HCL supplements I took at a time, the more inflammation I was getting. Not sure what that could mean, but something isn’t right with my stomach and acid maybe.
That’s all I can write for now, I tried to explain everything as best as I could. This thing has been ruining my life for the past 4 years, and I need help. Feel free to request or suggest anything you may think can possibly lead me in the right direction. Thanks

So in july 2023 I was diagnosed with pilonidal sinus and because it was infected I used to have light fever and swelling in my armpits. Those swelling used to be deep and on pressing over it i could feel some gland/tunnel type thing. I contacted my dermatologist online and he prescribed me some antibiotics for 10 days after which those swelling were gone. Last that month I had minimal invasive surgery for pilonidal sinus. For a month everything was going fine. Exactly on 31st day after the surgery I had a recurrence of the disease. Went through the same treatment again as my surgeon was positive and confident that It can be cured as I had a small cyst. And luckily he was right and since then I didn't had any issue. I went through 6 sessions of laser hair removal as a preventive measure.
I used to get a swelling in my public area when ever I used to wear those micromodal innerwear and maybe because of friction from belt rubbing on that area at the same time. But it used to get better and disappear within 2-3 days whenever I used to put some clindamycin gel on it. And sometimes those swelling in armpits. Till this time I wasn't sure if it was HS or regular boils.
Fast forward to jan 2024. I was having a tender spot in my right armpit so i visited a general physician near by and he told me keeping that area trimmed will help as due to friction some hair follicles get irritated and then infected because of moisture and bacteria. And he prescribed me oral antibiotics for 10 days. After 3 days the swelling and pain went away and then after 2 days I got swelling on my left armpit. Again took antibiotics for 10 days and it went away again. Had relief for 5-7 days and got a swelling again in my right armpit. No at this time I started panicking about lymphomo as I was under the impression that these swellings are lymp nodes and thus it can be lymphoma. I asked my GP and a different dermatologist about these bumps and whether it's lymphoma or something else. Dermatologist told me that it's not lymphoma but normal boils and prescribed me topical antibiotics and medicated soap and also asked me not to shave that area and to get laser hair removal. The swelling went away in a few days and then came back again after 4-5 days. I visited the same dermatologist again and asked him about HS. On looking at my lumps he said your lumps are not identical to HS bumps and you have not been having any tunnel or scar or 2 header blackhead. So I asked him about the diagnosis and he told me that these are recurrent boils and I don't need to worry about them much. Just keep it clean and get laser hair removal done to eliminate as much hair as we can.
Now I was tired and frustrated because of taking these many medications and an emotional baggage and health anxiety from my pilonidal sinus. I called my family dermatologist again (the 1st dermatologist) and described him my symptoms and he told me that just by the symptoms and my history of pilonidal sinus HS is a strong candidate for diagnosis. And he prescribed me 100 mg doxycycline twice daily and a topical antibiotic. And to get laser hair removal done. Now I started searching about HS and in that rabbit hole after looking to what it can turn into my health anxiety got worse. And then I eliminated junk food from my diet, packed snacks, processed food, added sugars, all dairy except clarified butter (as I read a few articles that any dairy product that has more fat than heavy cream is fine to consume so clarified is mostly all fat so I consume it in moderation), completely removed baked breads that include any type of yeast. I am not over weight, i don't smoke and I don't drink. I thought I am just doing good for my body. Initially it was hard to say no to all those tasty sugar and calories but I am pretty good at following diet so now I am pretty comfortable avoiding all those inflammatory food and triggers. I haven't found my exact triggers yet but I hope I find them soon. I still consume some 2 night shades potatoes and tomatoes.
Now after following diet for 20 days my boil from public area is gone, left armpit is normal again, right armpit was also clear for 2 days a few days back and thats when I had my 1st laser hair removal session for groin and armpits. Now I am having boils in my right armpit and I am still taking doxycycline 100mg twice per day. And applying topic antibiotics on my boils. The boils seems to become painless within 24 hours or 48 hours at max. But i wish I could say I got completely rid of them but sadly they are playing with my right armpit 😂 changing location within that armpit. I am not sure if it is because of the recent laser hair removal session that I am having this minor flare up.
On the positive side of things I can see something is working for me or maybe a combination of things (my diet and laser hair removal ).
FYI: from past 7 days I have started taking some supplements: multivitamins, probiotic+prebiotics and have ordered a specific probiotic i.e bacillus subtilis. I read a small study on this and decided to try it as all these antibiotics have surely destroyed my gut microbiome.
I hope everyone gets better and go into remission. Or somehow some great minds come up with a cure for this frustrating disease. Wishing you all a better health and better days ahead. ❤️

Dear Community,
I've just created this account to join this sub to finally show the middle finger to HS.
As I don't have many people to share what I've been through in the last year, I feel the need to relieve some things that have been bothering me for a long time. I hope it's not a problem for the sub.
I don't remember when exactly HS symptoms started but I do remember after I was 17 or 18, I started having small pimples on my buttocks. They did not bother me much as they were relatively small and had no bursts, just popping up and disappearing after some point. It was OK for a couple of years.
Throughout the college, I had lots of stress, cigarettes, plenty of alcohol, sugary stuff, bad fast food and overall an unhealthy diet. Flare ups were simply after drinking a lot of beealcohol, consuming sweets/chocolate, fast food, etc. Despite this very bad diet and habits, the flare ups were OK enough that I did not even notice that I needed help, I didn't even think that I had a disease. The worst cases were when I had those small pimples on my buttocks bursting "under the skin", just a little of pain afterwards and that was mainly it. It mostly felt funny to be honest.
Last year, I had the possibility of moving abroad for work (Germany). I wanted to change my diet beforehand, removing refined sugar forever due to a feeling in those days that the small pimples occured in the buttocks when I consumed a lot of refined sugar. Along with that, I visited my doctor to get a check up and get some vitamin supplements as well to support my new healthy life.
To recap, in April 2023 I stopped eating refined sugar, took Omega-3, Vitamin D, Magnesium and Vitamin B12 supplements. Soon after I realized a small pimple on my buttock getting bigger and bigger everyday. I thought that it'd be fine after some point, meanwhile moved to Germany. It did not get any better and I had to visit the emergency room as it was impossible for me to sit, properly walk and stuff. I had an operation that night and left with a very deep open wound which basically destroyed me physiologically. Considering the stress of moving to a foreign country, with a new work, it was not easy to overcome this.
However, I recovered somehow, focused on work and moved on, continued my supplements and modified my lifestyle a bit (still no sugar, almost no alcohol, not so much fast food, etc.). During this time, I had some boils which disappeared after some time. Months later, I found a dermatologist and figured out that I have HS. I was prescribed with Doxycycline for 1,5 months almost no flare ups except for the times I consume dairy but disappearing the next day. I felt better so the dermatologist told me to stop. One month later, I had another boil like the first one and in the end another surgery.. I'd like to mention here that I took some Vitamin B12 for a week or so, which I believe affected my flare ups negatively.
Now I modified my diet a lot, removed dairy products, alcohol, still no refined sugar, healthy fats, etc. Started taking doxycycline again these days after I had a flare up but it's not going very well. I think I'll be taking Doxy for the following 2-3-4 months now and I just hope that everything will get better. I hate the possibility of having another surgery after all this.
With that said, sorry for the headache and very long personal experience, but I couldn't keep these things to myself anymore. I'm just sad but trying to get better, but the worst part is that my condition got much worse than before when I decided to build good habits, be healthy, and so on, one year ago.
I guess my body just did not like it.
Thanks.