aj72's story

Member Stories
#21

Here’s my results

Ceruloplasmin 0.19 g/L (0.20 - 0.45)
Copper 11.0 umol/L (11.0 - 22.0)
Zinc 15.1 umol/L (9.0 - 19.0)

I saw JN’s doctor and he didn’t seem to concerned. He prescribed me Hydrocortisone, Copper and Zinc daily. After taking those for a couple days I crashed really bad again for about 3 months and developed a lot of new symptoms. I can’t tolerate HC or copper at all at the moment and I think the extra copper I was told to take was actually causing more problems as I don’t have enough Ceruloplasmin to transport it.

#22

This is what I came up with for mine

Non-Ceruloplasmin Copper 53.0

wilsonsdisease.org/wilson-di … ulator.php

For the past couple of months I’ve felt that a lot of my mental symptoms have to do with copper rather then just having low cortisol. I have been working on treating my adrenals first though and seeing how that affects my Ceru/Cu levels.

I’m gonna run some more tests in a week or so.

  • Copper Urine Test
  • Copper Serum
  • Ceruloplasmin Serum
  • Taurine Urine Test
  • Mineral/Metal Analysis Hair Test
#23

Just saw these posts…

53.0, in what units? That would be extremely high, given that the normal range is 5-15 ug/dL. However, your units for serum copper didn’t look right to me – are you sure ? If instead I assume the units were such that this equates to 19 ug/dL, then I calculate your free copper as 12.9ug/dL, within the normal range.

And if so, then it does seem you’re more in line with copper ‘insufficiency’, and some additional copper might be a good thing. I would suggest testing very well (through repetition) your idea that copper is causing symptoms; generally I find it more likely that hormones would cause immediate symptoms, than fluctuations in trace minerals.

And, given that glucocorticoids seem to maybe affect (increase?) ceruloplasmin levels, it seems to me you may be right that low cortisol could be causing your low serum values.

#24

An update… I did a brief run of dexamethasone – one week on, one week off, another week on. 0.5mg in the evenings. My intent was to try to emulate the improvements/recoveries reported by a few on the board, “some time after” quitting dexa.

Although the point wasn’t to feel good while actually taking it, I did! I had better mood/energy, anyway. And erections seemed a little better sustained. But libido wasn’t helped. Some of the benefits have seemed to persist since quitting.

Over this last week, I also tried ‘daily’ Cialis. I think maybe it did help erections; but not libido.

In a week, I’m going back on hCG, at a fairly low dosage, lower than last time. I’m still a little concerned of repeating the problems of last time, but this time at least I’m going to run some tests if that happens, which maybe could explain what’s happening. Last time I recovered OK after quitting; here’s hoping I do again.

#25

AJ,

Thanks for updating us on your status.

Are you still working with Dr. Khera in Houston for your current treatment? If so, are you happy with him, and would you recommend him to other PFS guys?

#26

Yes, I am. There are certainly a lot of pros. It depends on what you’re looking for.

He takes us very seriously. Depending on what someone means by the phrase “PFS doc”, I’m not sure this phrase applies – he’s a urologist who believes in PFS, is knowledgeable in it, and is very willing to see PFS patients and do what he can. I think he’s probably very knowledgeable.

He prescribes hCG (not always easy to find). He’s willing to try other things, and flexible.

He prefers email as a primary means of ongoing communication, and almost always responds – so in this sense he’s very accessible. Of course, his responses are usually one-liners, and often I’ve questioned whether he’s read the email at all. (This is probably the one negative to report.) So I keep things very simple, and we get by, more or less.

He doesn’t claim to have definitive answers as to what is really happening in PFS. At the same time, his hunch seems to be that PFS is about low DHT. From what I’ve seen on the forum, and my own experience, this explanation doesn’t cover it. He’ll probably push you hard to try hCG, for that reason; and he prescribes 1500 IU/day, which many sources (Crisler, Shippen, others) will say is too high.

Finally, my insurance covers him (with the exception of one of the urological tests he did).

If anyone is considering seeing him, feel free to PM me with questions.

#27

I had to convert from the units we use here in Australia

0.19 g/L = 19 mg/dl
11 umol/L = 110 mcg/dL

Assuming I’m correct in my conversion I get 53 ug/dl Non-Ceruloplasmin Copper

#28

Aj,

so your sexual issues started when you commenced TRT? Don’t you blame TRT for your sexual problems? Developing PFS 4 months after quitting Finasteride is quite a long time but with this medication it is likely.

#29

Returning to the boards after about five months away. First, a response to ‘keepup’…

I don’t know for certain this IS fin, but it’s the only reasonable explanation I know of. When you say TRT is a likely explanation, what do you mean? I’ve never heard of persistent libido loss from TRT. If you’re saying that it’s suppressive of endogenous T, true – but net levels should generally stay in the same ballpark. And even if not, when I quit 2-3 months later, my T levels were higher than when I started, and yet my libido hasn’t returned.

I also had strange symptoms while on fin, and throughout the four-month period – just not the libido loss. (The reason I was taking T in the first place was serious fatigue, and I was in a difficult depression unlike what I’ve experienced before.)

My best explanation is that fin set the stage somehow, and messing with T levels (probably a sudden upswing when I started TRT, possibly followed by a downswing) pulled the trigger. Given that the body’s regulatory control systems seem to play a role in the etiology, I don’t find this unreasonable. But if someone has a good alternative explanation (especially something with a known treatment), or if I’ve missed something, I’m all ears!

#30

The reason I was away for 4-5 months was that I was in a relationship. I wouldn’t have started down that road because I was unsure of my condition, but she kind of pursued me so I decided to try it. This was the first time since fin.

I found that, whenever I became close to her, I responded. It wasn’t quite like pre-fin, but I’m happy just to be able to basically perform!

It was an odd thing… I was never “in the mood”, per se; but when I felt close to her emotionally, or when I hugged her or was otherwise physically close to her, I’d suddenly get turned on. (This actually makes me think of oxytocin… I believe these situations are where oxytocin kicks in, and oxytocin also affects libido. Or maybe other things also kick in harder at those times.)

The other way things were different than pre-fin was that, despite being turned on, there was some element of it missing… which I’ve dubbed ‘momentum’. If we got interrupted in some way, it was almost like I could accept that too easily. Like, in that moment I could take it or leave it. I enjoyed it, had a drive of sorts, wanted to keep doing it; but if we couldn’t, there was no frustration.

I’m waiting on a low-dose naltrexone (LDN) prescription to arrive next week. I was going to try this anyway, but now see it’s had some good effects for others on the board. LDN is not the same as ‘taking naltrexone’ – in some ways it’s like the opposite. Naltrexone blocks your opioid receptors; LDN increases your endogenous opioids. I can think of a handful of different ways LDN might be beneficial, and it’s cheap, and I found a doc who’ll prescribe it. Worth a try.

After that, would like to try deprenyl/selegilene.

#31

aj,

Thanks for coming back and updating us. Glad to hear you had success in your relationship.

I can somewhat relate. Since PFS has been with me for the past year, I have had similar experiences. As a married guy, I’ve been able to get aroused and perform normally with my wife about one to two times a month. This often comes from just getting close in bed or waking from a sexual dream, etc. However, for the other 28-30 days of the month, I often have very low or no libido. So while the majority of the time I get depressed due to my current state, the ability to perform at times, with some level of libido, gives me a glimmer of hope and optimism.

Take care.

#32

Thanks OhioGuy. I find it interesting that some triggers “work”, and some don’t. Seems like a potential clue.

I wanted to add a couple other notes… First, something I take is 1-2T of extra virgin, cold-pressed olive oil. This is a little influenced by folks like Udo Erasmus for general health, but more specifically, b/c I think it may impact remyelination. Olive oil is 50-80% oleic acid, the major fatty acid component of myelin. Another myelin component is nervonic acid, a metabolite of oleic acid. I had a fatty acid profile done last year, and both of these were pretty low. If there’s nerve damage in PFS, it’ll be hard to heal if there isn’t enough of that stuff around. Olive oil is cheap, easy, and at the grocery store – there’s no reason to risk not having enough myelin ingredients in my diet. Butter has palmitic acid, which is a precursor to all of it, so if you get real butter in your diet, this should be good also. (Low-fat diets could be a problem.)

The other thing is with regards to deprenyl. I’ve only seen its dopamine effects mentioned on the boards, as a reason why. But there are other good things to consider… according to these studies:

  • it’s neuroprotective (ncbi.nlm.nih.gov/pubmed/9564614)
  • it increases ciliary neurotrophic factor, a neuronal growth factor (ncbi.nlm.nih.gov/pubmed/8060389)
  • it upregulates superoxide dimutase (SOD), at least in the brain’s striatum. ncbi.nlm.nih.gov/pubmed/7669938. If oxidative stress and/or inflammation is at work, this could be useful.
  • it increases “glutathione activity” in the hippocampus; could theoretically be true of other brain/nervous tissues. Glutathione is the body’s most critical anti-oxidant. ncbi.nlm.nih.gov/pubmed/15910165 (This study found SOD to not be impacted, but did verify higher neuronal count from the study above.)

In other words, deprenyl goes beyond dopamine, to two other culprits we talk about: nerve damage and oxidative stress / inflammation. Life extensions recommend everyone over 40 take a weekly dose of it, at a fairly low dosage (~5mg).

#33

Hey AJ -

We spoke some time back - I saw Dr. Khera around the same time you did. I started a month or so of HCG and it “seemed” to have helped erections etc… but I think that it might have possibly given me a NEW symptom, brain fog!! I’m not sure how this is possible but I know I didn’t have it until sometime around when I started the HCG/Arimidex…

Wanted to ask 2 questions for you though:

1.) How did the HCG work? Did you get any benefits from it the second time around?
2.) You mentioned that you have read of two guys who had permanent vision changes with Cialis - can you send me the link for that (or let me know where you found that)? This worries me, in that I have seemed to benefit from it but am very nervous about my eyesight.

Thanks

1 Like
#34

Really sorry about your brain fog… are you still on the hCG? IOW, did you quit and you still have the problem? If you haven’t quit and still intend to, be sure to go off slowly.

And be sure to tell Dr. Khera about it. As I recall, he said he’d heard reports of people getting worse on it, but it hadn’t happened to any of his patients.

I never did take hCG the second time around, between being leery about it and getting distracted by other stuff at the same time.

I don’t remember where I saw the guys who said this, but here’s Medline: nlm.nih.gov/medlineplus/drug … 04008.html: “Some patients experienced a sudden loss of some or all of their vision after they took tadalafil or other medications that are similar to tadalafil. The vision loss was permanent in some cases.”

I mentioned this to Dr. Khera, who gave me the Cialis. He’s a urologist, and so probably has quite a bit of experience/knowledge with Cialis. He seemed to doubt the connection between Cialis and vision problems.

#35

Brain Fog seems to stayed after I quit (I only did the HCG for a month or so…). I really think those with PFS have suffered a “shift” in their hormonal homeostasis. It seems that lowered DHT actually can make some symptoms better. As a side note, I recently had my 3-adiol G tested twice and I am in the very upper range. And, my genetic testing that Dr. Khera did came back completely normal. I think the researchers are barking up the wrong tree thinking that PFS sufferers are somehow more susceptible to this syndrome based on that. Because I was a “great normal responder” to the medicine for 12 years!! It wasn’t until the last two that things changed. And again, my 3-adiol G is extremely healthy and shows great 5 alpha reductase activity (along with upper level Testosterone) so I am beginning to think it’s brain (not hormonal) related.

Anyway, thanks for your experience. I am nervous about the HCG but need to do something so I may try it again. Or, I may try a round of clomid (I have a few months worth of that).

#36

I think all of our jaws will drop when they do the fMRI’s as part of the BWH study. Just my opnion…jaws drop.

#37

My jaw as got a lot smaller thanks to PFS.

#38

I should’ve posted this a few months ago, but the whole thing has been distracting.

Short version: taking LDN in January has resulted in clear improvement in erections/libido, at the expense of developing probably Peyronie’s Disease and chronic prostatitis. Yes… mixed feelings about this.

Longer version…

Low-dose naltrexone (LDN) has been mentioned on this board before. I took it in January, partly for PFS and partly for other reasons. After several nights, I began having… somewhat “uncontrolled” erections at night. (By this I mean, they developed too easily and wouldn’t easily dissipate, even after urinating… had to walk around the house thinking about baseball for 15 minutes before they’d start to break.) And then during the day, my penis would be kind of sore from the experience.

(Note that nocturnal erections haven’t really been a problem for me for much/most of my time in PFS (since 1Q12). My problem was more related to libido and ‘sexual erections’.)

When the first signs of these erections hit, I quit the LDN. I was on the lookout for it, because something like this had begun to happen when I tried LDN in summer 2013. I’d quit it back then, because I was concerned about nighttime priapism causing penile damage; the erections had quit immediately also. I decided to try it again in January. The problem is that these erections continued for several days after quitting LDN, for 4-5 days, and then they began to dissipate. But my penis hasn’t been the same since then.

The changes since then:

  • probable Peyronie’s disease; penile torsion and bend, which weren’t there before LDN. Other Peyronie’s-associated symptoms.
  • pain at the tip of my penis, especially after ejaculation; chronic prostatitis?
  • erections definitely come more easily; libido improved

In case you’ve homed in on the third item, let me remind you that the first two items are potentially very bad things. Yes, it’s nice to get easier erections again. But Peyronie’s can potentially develop into a debilitating situation. My post-ejaculatory pain is only moderate, but it’s enough to make me think twice about doing it.

Two urologists have concluded this was not priapism, per se. Most likely the erections didn’t last long enough for that; and apparently priapism is accompanied by excruciating pain. These erections weren’t really painful, just “uncomfortable” and or “sore”. No one really knows what it is that happened. (Although that may not say much, since urology seems like a poorly understood field.)

I’ve seen people get confused between normal naltrexone and LDN. Naltrexone is typically in the 50mg/day range, and is taken for the purpose of blocking opioid receptors. LDN is 4.5mg/night (taken at night) for the purpose of raising endorphine levels. Same drug, but very different physiological effects and goals.

I can’t find anything online about anyone experiencing these symptoms with LDN. I don’t know if my experiencing them has something to do with prior PFS damage? But I think others on this board have taken LDN and not experienced any of this.

I’m currently focused on doing what I can for the Peyronie’s. Fortunately I’ve caught it early, and so far the symptoms aren’t extreme or debilitating. (yet)

#39

For the sake of people trying to piece together stories afterward, I’ll write one more post to close out my PFS story (I think).

I was never sure I had PFS (see earlier posts). But my drive is now more or less back. I’m not sure it’s at the same level it used to be, but I have no problem functioning now.

I’ve decided that the biggest factor in my symptoms was a reaction to mold, combined with mental and emotional stress. Once I knew what to look for, I’ve since then seen that mold affects me significantly. The TRT I started right before my libido disappeared, may have somehow been involved also.

It didn’t happen overnight, but I seem to be mostly back. I’m not convinced PFS wasn’t actually part of it as well, but I never did quite fit the pattern.

I still stand with this community. Whether I have/had PFS or not, PFS is real. I will never touch Finasteride again, and I will spread word of the dangers. My hope and prayer is that all of you would be healed of this unspeakable disease.

aj72

#40

Did you ever figure out if you had Wilson’s?