My Long PFS Journey

Sorry to hear this @giuseppek . It appears as if something is messing with your immune system and triggering a response. Elevated lymphocytes (immune cells) and antibodies (IgE) are clear signs. Allergy/allergic reaction to something is also a possibility here. Do you suffer from IBS/IBD?

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@doomed80 I am also looking into Th1/Th2 balance. I think it would be a decent idea to get cytokines tested. (IL-4 etc)

The IgE being elevated is linked to Th2 dominance. I have not found much about elevated lymphocytes being linked to Th2 dominance, but I have found that it is suggestive of a viral infection! So this theory I will post below makes complete sense to me and would explain my ill health.

Th2 Dominance -> Th1 Supressed -> Body unable to fight off intracellular pathogens. Body is tired from this constant losing battle and my guess is the adrenals get messed up badly as well.

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Update:

I continue to improve in several aspects. I’ve taken several crucial steps in my journey to recovery:

  1. Got surgery to remove the titanium screws and plate that have been fixed in my zygomatic bone for 10+ years. My face is so swollen at the moment and I’m in pain but I can take it.

  2. Continue to healing my gut. I’ve finished experimenting with Clostridium Butyricum probiotics in an attempt to increase butyrate and heal intestinal lining. I’m now revisiting commensal E. Coli probiotics. I have reason to believe I’m low in E. Coli. I’m experiencing some herx symptoms (eg. trouble breathing) but it’s manageable. I’m also consuming natural prebiotics foods such as onion, fruits, garlic (inulin; fos; gos; onion; mos, etc.).

  3. I’m back to working out with lowered intensity. I managed to drop about 5KGs and this is helping to balance hormones especially T:E2

  4. Supplements-wise, I’m on ~300mg Vitamin C + 5mg Zinc + ~80mg Magnesium + Amino acid combo + occasionally 0.15mg Melatonin

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You think titanium had any influence on your condition?

Hard to tell @Das . I’ve looked everywhere for silent inflammation and used elimination process to rule out any potential triggers.

I first checked for hidden infections and have done a number of tests but results were negative. I then focused on healing the gut and have gone along way in healing my longstanding IBS. This made me feel like 70% recovered but there was still a missing piece. Then I read on metal hypersensitivity and came across case studies for people experiencing reactions to titanium implants. This is rare but it’s definitely a possibility that worths further investigation. I suffered prolonged rhinitis and ringing ears that begun years after getting titanium implant fixed. I’m not holding my breath just yet but I think I’ll be able to tell for certain in couple months.

Sadpenis

Nov '19

3000 IGE. It has dropped significantly since I started Dupixent though.

Dupilumab binds to the alpha subunit of the interleukin-4 receptor (IL-4Rα), making it a receptor antagonist.[13] Through blockade of IL-4Rα, dupilumab modulates signaling of both the interleukin 4 and interleukin 13 pathways. In clinical trials, specimens from people receiving dupilumab showed decreased levels of Th2 bio-markers.[14]

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Quick update:

Woke up horny today and experienced both nocturnal and morning erections. I thought about my ex(es) and imagined my favorite sexual positions :joy:

The interesting part, however, is I’m more sweaty and my body odor is stronger and needing more showers. Also getting “bad breath” even though my oral hygiene is the same :thinking: Not that I’m happy about it :see_no_evil:

My recent routine:
• Colostrum 2X day (empty stomach)
• 3000mg amino acid
• High fiber/high fat/juices/fruits/veggies/nuts/beans
• No wheat/oats/pasta/lasagna/macaroni/sweets
• Two meals a day & skipping dinner (sort of intermittent fasting).
• No multivitamins/supplements/hormones
• Exemptions are 5mg Zinc, 250mg Vitamin C & low dose fish oil (omega 3 6 9 combo)
• No coffee
• Dark Chocolate 90% (20g per day)
• Tea Geschwindner black tea
• Garlic 1-2 clove & ½ onion per day
• 3X (Sometimes 4X) resistance training per week

I wish this lasts a life time.

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Hey @doomed80, thank you for sharing your journey with us! It’s excellent! I love the fact that you bring a wealth of knowledge to the forum. That said, I wanted your thoughts on some things:

  1. Do you think symptoms like tinnitus/voice weakness are thyroid related? Or androgen related? Do you think these are usually reversible?
  2. I read one of your comments where you mentioned a key factor of recovering is lowering TSH from 3 to around 1. With a TSH of 2.3, how would one go about doing this?
  3. Do you think calcification/plaques in the penis are just a result of inflammation, and can be reversed one the root is addressed? Same with the sshrinkage/fibrosis?
  4. You did assure another member that sensitivity eventually does return, but do you think it is serotonin relates? What biological factors do you think bring about sensitivity?

Welcome to the forum @blackkey1996

My healing journey has been long and with more ups and downs than I can recall. I learned from from feeling good and bad.

  1. I mentioned this elsewhere but tinnitus is usually a symptom of something else. I’ve had it on and off but it does get better if you treat the cause. These are some things to look for:
  • Middle ear infection. An ENT can rule this out.
  • Hypothyroidism. Meaning thyroid is under-functioning. Check for TSH, ft4 & ft3 through blood test.
  • Hypoglycemia (low blood sugar). Also causes tinnitus especially when blood glucose gets too low.
  • Stress & anxiety. It triggers adrenaline which causes blood pressure changes and thus tinnitus.
  • Hypertension. High blood pressure can also be a cause.
  • Low dopamine. This one is tricky. When Testosterone gets low, it causes lower dopamine and according to studies this can cause tinnitus to flare.
  • Excess inflammation . When ever the ear nerves get inflammed, tinnitus can occur.
  • Loud noises can also cause it.

So, the only way to go about treating tinnitus is to try elimination proccess but yes it does get better.

  1. I recall back in 2017 and 2018 my TSH was > 2.00. Optimal TSH is closer to 1.00, Thyroid is involved in so many body functions including metabolism, body temperature, sex hormones, gut motility, etc. So, it’s critical to healing. You need to go over your daily routine and see if you’re doing the following:
  • Getting enough iodine from iodized table salt.
  • Are you on any supplements? Multivitamins? Medication? Hormones?
  • Deficiency in copper can lead to higher TSH. Try to get it tested through hair analysis or through testing Ceruloplasmin level (copper carrying protein).
  • Getting enough protein because thyroid hormones are made from amino acid Tyrosine, which is found in protein.
  • Low Adrenals. Low cortisol causes higher TSH. This is why I always say that one must always heal the adrenals first because they affect thyroid, which then can affect testosterone.
  • Check for hashimoto’s (antibodies test). This is an autoimmune disorder in which immune system attacks thyroid.
  1. Inflammation can theoretically cause anything within the body to go awry. We know plagues is a connective tissue disorder involving the growth of fibrous plaques (scar tissue) in the soft tissue of the penis. Testosterone, for example, is anti-inflammatory and thus may modulate immune system and prevent excess inflammation from occurring. Treating the root cause of excess inflammation can result in improvement of the problem. My latest hypothesis is that shifting hormones can affect the body in so many ways including immune system and gut microbiome. I started my journey not knowing what to look for. I focused too much on increasing androgens which have fixed me temporarily (testosterone replacement therapy + hydrocortisone). Notice that I added hydrocortisone to testosterone therapy to curb inflammation. In recent years, I sought for all potential sources of inflammation and tried best to treat them and the result is better than anything I’ve done in the last 10 years.

  2. I had experienced the penile sensitivity problem when I was taking finesteride and after quitting. It slowly improved over time. As I said above, I did testosterone therapy and added some hydrocortisone. So, maybe this is what helped it but I really can’t say for certain. However, I noticed something strange recently, I experienced some temporary penile sensitivity when I was experimenting with a certain probiotic that raises Progesterone level. Progesterone is known as anti-androgenic and Anti-Estrogenic.

" Progesterone is an anti - androgen because it competes with androgens for androgen receptors and an anti -estrogen because it downregulates estrogen receptors (Johnson and Everitt, 1995)."

The problem was gone after I stopped the probiotic. So, I think penile sensitivity has something to do with androgens (DHT) and/or estrogen (E2). Try and test for LH, T, E2, Progesterone & possibly DHT.

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Thank you for your detailed response! Really appreciate your presence here.

  1. I definitely believe that my tinnitus was caused by extreme stress during my crash. But it could also be due to my barely optimal TSH of 2.37, Praying that it will get better. But what do you think about relatively weak voice? My voice feels a little croaky and wispy sometimes, not as booming. I am assuming that could be androgen related OR thyroid.
  2. I switched to solely to Celtic sea salt to get all the trace minerals so I believe i don’t get iodine in my diet. I will now supplement 3-4 drops every few days of iodine to cover that.
    The only supplements I am on right now are to prevent/ cure penile plaque/fibrosis:
    L citrulline
    Calcium/ Magnesium with a 1:2 ratio
    Pentoxifyllin
    Taurine 3000 mg/day
    Very very rare cialis. Very rare.
    Planning on adding Propolis & Acetyl L Carnitine.
    My serum copper level was 104 in a range of 63-121, so im guessing im good on that front.
    I did have a thyroid panel:
    Thyroid P antibodies: 12 in a range of 0-34,
    Free T4: 1.32 in a range of 0.82-1.77
    Free T3: 2.7 in a range of 2.0-4.4
    Reverse T3: 17.7 in a range of 9.2-24.1
    TSH: 2.37 in a range of 0.450-4.500
  3. I noticed you mentioned you experienced temporary sensitivity from a probiotic that raises Progesterone. Did you mean to say insensitivity? Because wouldn’t it be good to have sensitivity back even with a progesterone raising probiotic?

By the way, speaking of your inflammation theory, I am sure you have heard of Josh Abrahams from pfshealing. This guy researched extensively on the root cause and came up with 5 articles. The website got deleted though but it can be found on waybackmachine.com: https://web.archive.org/web/20161023142354/http://www.pfshealing.com/

On another note, I had a GI MAP stool with zonulin assay done which will be giving me a detailed picture of my gut microbiota. Do you mind if I share my results with you? New here, so I don’t know how PMing works. I had my T and E tested two months after my crash which came out to be 512 and 17.9 (E values were in such a range that made increased imprecision likely according to the lab)

Hi doomed. Happy for your improved health . Can you pls tell us your daily regimen and what you feel turned around your health to be consistently better ?

I’ve been dealing with PFS for many years and willing to try anything for consistent improvement. The more specific the diet / supplements the better

Yes, weak voice can be tied to hypothyroidism and low androgens. Thyroid issues would result in hoarseness and lower androgens cause high pitch voice. I experienced both at different stages in the past 3 years. You could definitely benefit from boosting your thyroid and achieve TSH closer to 1.00

But like I said, adrenals should be made a priority since it can affect numerous bodily processes including thyroid function. Also controls level of inflammation, electrolytes (Na, K, Ca, Mg, P), sex hormones, blood pressure, blood sugar, capacity to stress, etc. In my case, I had DHEA-s (precursor to testosterone) at the rock bottom and high 24hrs cortisol. I dug deeper to find out why is my body pumping too much cortisol and it hit me: excess inflammation.

This is when I shifted my attention away from trying to raise my testosterone/androgens to finding and treating the cause(s) behind my excess inflammation. I found several potential causes:

  1. I had past Titanium implants removed.
  2. Removed amalgam teeth fillings.
  3. Removed leftover stitches in my nose from a past surgery that used to get inflammed regularly.
  4. FIX MY GUT. This is the most important!

See, I observed I always had GI problems that I didn’t pay much attention to in the past (constipation; food sensitivities; random stomach aches; bloating; flatulence) in addition to random allergies. On top of finesteride, I also had taken antibiotics. I had numerous tests including microbiome analysis. I’ve been working on fixing my gut and it really did it for me eventually.

So back to your case, your rT3 looks like it’s a bit high and this may also indicate inflammation. The Progesterone raising probiotic caused me penis insensitivity (sorry my mistake). Insensitivity went away after stoppage.

Do share your gut tests and I can attempt to pass my opinion. If your E2 is 17.9 pg/ml then it’s considered low(ish) in relation to your T level (512). This actually produces T:E2 ratio 28.6, which is a bit high(ish) in my experience. I felt best with E2 around 22-30. So, you’re not far off.

Why are you taking taurine, pentoxifyllin, L citrulline, Calcium/ Magnesium & iodine for? Are you referring to lugol’s iodine solution? High dose iodine also acts as antibacterial and may lead to higher TSH.

@blackkey1996

@Gwhm

Did you ever get microbiome analysis done? We can start there.

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I’m wondering why my replies here are getting removed. I am not sure how to contact the mods here because i really am trying to respect the decorum of this forum. Is there any reason for this?

Hi @blackkey1996 our apologies, as you’re a new user who hasn’t completed a member story or the survey, your posts are always flagged for review. Just a part of the system unfortunately.

If you could add a story and fill out the survey, that would be much appreciated.

@Sugarhouse Done, sorry! Just hoping i’m able to get my old posts back!

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Got my gut results! the values in the brackets are the normal range):

H. Pylori:

Helicobacter pylori 3.6e3 High (<1.0e3)

Normal Bacterial Flora:

Clostridia (class) 1.72e8 High (5.00e6 - 5.00e7)

Enterobacter spp. 5.95e7 High (1.00e6 - 5.00e7)

Phyla Microbiota

Bacteroidetes 1.13e13 High (8.61e11 - 3.31e12)

Firmicutes 7.13e11 High (5.70e10 - 3.04e11)

Opportunistic Bacteria:

Bacillus spp. 2.38e6 High (<1.50e5)

Morganella spp. 3.36e4 High (<1.00e3)

Pseudomonas spp. 1.56e6 High (<1.00e4)

Pseudomonas aeruginosa 2.04e4 High (<5.00e2)

Streptococcus spp. 2.85e4 High (<1.00e3)

Intestinal Health:

Steatocrit 20 High (<15 %)

Anti-gliadin IgA 52 (0 - 157 U/L)

Secretory IgA 239 Low (510 - 2010 ug/g)

Add-On:

Zonulin 44.1 (<107ng/g)

Apparently I don’t have leaky gut based on this which I guess is great! But this definitely explains my GI symptoms and underlying inflammation. My doctor told me i can eat anything but in moderation and to choose veggies more over fruits, along with the supplement protocol she will be prescribing me. However, I don’t think letting all hell break loose on food without knowing which one is right for my personal microbiome is a good approach…even with the correct supplements lol.
I got diagnosed with LaryngoPharyngeal reflux (LPR/Silent Reflux) by an ENT, which kind of explains the voice hoarseness. Now I’m just going to be testing to rule out GERD or anything cause I really don’t want that lol.

Re adrenals, do you think my adrenals are busy/depleted because of fighting these gut pathogens and additional stress? My doctor said all can go back in order when gut is fixed…
My blood cortisol level was 13 in a range of 5-25, and my DHEA-S Blood test came out to be 432 in a range of 80-560.

I am taking taurine pentoxifylline, L Citrulline, Calcium/Magnesium strictly to prevent plaques and fibrosis. That’s my most worrying sympton.
Iodine I am taking only because I don’t get iodine in my diet since I only use sea salt. It’s not lugol’s iodine but it’s some i got from this supplement store. I only do like once or twice a week 3 drops.

Congrats on getting the test @blackkey1996 . I’ve scanned your results and here are my findings:

  • Having high H. Pylori is problematic. Have you been on antibiotics in the past? It’s a pathogenic bacteria that’s been linked to several health issues including gastrointestinal cancer, ulcers, and autoimmunity/inflammation. It’s in your best interest to try to eradicate it or at least manage it. Most doctors would recommend a course of antibiotics but it’s a double edged sword since they can also kill other beneficial bacteria and wreak havoc in your gut. My advice is to try the natural route first: Broccoli sprouts; ginger; celery/juice. You can also couple these with these probiotics: BioGaia Protectis (L. Reuteri); Pro4-50 D-Lactate Free; & Align.

  • I’m trying to calculate your Firmicutes to Bacteroidetes ratio. Do you have percentages of each? Calculating the ratio would help setup an individualized food plan.

  • I couldn’t see any results for Lactobacillus, Bifidobacteria or E. Coli. It’s important to know if you have enough of them. They serve critical functions. I had lowish Bifidobacteria and ZERO Lactobacillus. So, I focused on including food items that help them grow. My symptoms have improved dramatically within a few weeks.

  • Stool analysis report also doesn’t mention what is your microbiome diversity. People with low diversity usually have more issues or dysbiosis.

  • Try the following protocol if you can: Bimuno (prebiotic to help increase Bifidobacteria); BioGaia Protectis probiotic drops (L. Reuteri to help reduce H. Pylori overgrowth; boost oxytocin & B12); Align (B Infantis) probiotic; plain Activia yogurt; oraganic Ghee (contains natural butyrate to help lower inflammation); boiled potato that’s left to cool down (contains resistant starch to boost gut SCFAs); raw cacao (dark chocolate to boost dopamine); blueberry; more cooked beans & legumes; limit coffee; replace dairy with goat milk; low dose Zinc-Carnosine & low dose vitamin C before bed.

Do the above for 3-4 weeks and see how you feel. Btw, your DHEA-s level is great but your cortisol is on the lowish end. What time of the day your cortisol was tested?

When ever your body is under stress, your adrenals will work overdrive to help you survive. Stress can be physical effort, injuries, getting sick, emotional trauma, allergy to foods or any substance, and of course immune system being activated and causes inflammation.

When stress hormones are chronically high, your testosterone and growth hormone decline and result in low mood, low libido, poor sleep, and reduced strength and recovery. You would typically feel wiped out/rundownt/tired but wired. How much iodine in 3 drops? RDA is set at only 150mcg. I suggest you ran microbiome analysis from ThryveInside or Vbiome in the future for more data.

  1. I went to an ENT and he did a laryngoscopy and diagnosed me with Laryngopharyngeal reflux (LPR) he prescribed proton pump inhibitor but i’m not taking any medication, i’ll just go with lifestyle changes. It’s also a factor that every time a vocal chord is inflamed doctors usually just mark it as LPR, whereas there could be several other reasons as well. And more microbiome disruption doesn’t sound good to me.
    He said LPR could mean I have GERD too but i’m like…whatever lol.

The reason i am taking all these supplements and pentoxifyllin is because they are known to work against plaque. That is my biggest concern right now so i’m throwing the kitchen sink at this problem. I want these plaques to go away or dissolve and not get worse and calcify. Taurine, magnesium are known to work against fibrosis and pentoxifyllin dilates the blood vessels to improve blood flow. I am just afraid that this might effect sensitivity.

Iodine i’m taking because i only use celtic sea salt. That means i don’t have any other way to get iodine in my diet. And apparently iodine is necessary for thyroid function? I just bought iodine from “trace minerals” from the vitamin shoppe, supplementing like twice a week 3 drops each time.

Its good to have a presence like yours on this forum.