Hey guys,
one year passed, things only have worsened, and still no results.
After my last post I finished the immunosuppression and switched to an antibiotic regimen right away. Since lyme disease seemed to be a possible cause, I followed an appropriate antibiotic regimen against borreliosis. I had four weeks of 400mg Doxycyclin daily and 200mg of Hydroxychloroquin every two days. The terrible state of health that I was in after the immunosuppression improved within a couple of days, especially the 'foggy head' feeling got better. It did definitely not cure me but my symptoms seemed to get better slowly. Most interestingly though is the hard fact that my ALT serum level improved from 138 to 57 during the antibiotic regimen (upper normal range is 50)! I could also feel my liver pain level decrease. This is especially significant since the antibiotic is metabolized by the liver and is normally rather expected to have a negative effect on the liver.
I stopped this antibiotic regimen, waited two weeks, and then started a hard-core combined antibiotic therapy, which is used to treat borreliosis. For four weeks I had daily 2g Ceftriaxon (intravenously), 200mg Minocyclin, and 500mg Tinidazole. I experienced a slow positive reaction, my head felt clearer, and my heart and liver pain completely disappeared towards the end of the antibiotic regimen. Still, considering this long-term, high dose, combined antibiotic regimen, my symptoms only showed mild improvement. Especially the post-ejaculatory worsening could be observed throughout the therapy. After the therapy I felt better and my ALT serum level was still at 60 one month later but from there my condition deteriorated again. I did not take any further medications until this November, at which time my ALT serum level had risen again to ~100, which manifests itself as worsening liver pain.
After the two antibiotics sessions I waited some weeks for the antibiotics effects to dissipate and then had about every lab test for lyme disease performed that you can think of, including shipping a semen sample to a specialized lab in silicon valley to have it analyzed for trace amounts of borrelia DNA. This as well as most other tests were negative for borrelia. I also saw two top European lyme disease specialists, which both agree that lyme borreliosis is highly unlikely / can be ruled out.
I do agree with this conclusion but still see some kind of external vector, that thrives in an immunosuppressed system and can be controlled by antibiotics, as the most likely causative agent for my symptoms. A high ranking infectiologist at my local university hospital does not agree however and states that my reactions to immunosuppression and antibiotics are meaningless. I was denied any kind of diagnostics in that respect and he is trying to get rid of me by labeling my case as 'chronic fatigue symptom'.
I was however tested by another doctor for a broad range of antibodies against several infectious diseases and have positive IgA, IgG, IgM against EBV and Chlamydia pneumonia (not the STD). These results are only indicative and it is not clear if there is indeed an active infection of either EBV or Chlamydia pneumonia but I am currently on a treatment regimen targeted at both potential infections. I started with an immune modulation against EBV (which is also active against herpes virus) as well as loads of nutrition supplements (Vitamins etc). http://www.drugs.com/international/inosine-pranobex.html
Three weeks of the antiviral and supplements did not have any noticeable effect. Now I started again a combined antibiotic treatment targeted against chlamydia pneumonia. It consists of 600mg Azithromyzin 3 times a week, 200mg Minocyclin daily, and 800mg Artemisin daily. I am just in the 'ramping-up' phase and I cannot detect any major effect yet. It does seem that my post-ejaculatory exhaustion is milder and my post-ejaculatory prostate pain as well. I have 7 weeks on this treatment ahead of me... will keep you posted.
If anybody has made similar experiences as me, please let me know.
Hi eur79m,
You have somehow an atypical presentation of POIS. Your elevated level of alanine transaminase (ALT) is not a common finding in POIS, as far as I could see from forum members info, as well as from my own blood tests through the years. In my opinion, it seems that POIS is only a part of your health challenges, as you seems to have an underlying metabolic disorder that affect your liver, and, evidently, is worsened by POIS. What you experience as chronic, POIS symptoms are akin to what I call my low-noise, everyday POIS, which I came to understand is not caused by POIS itself, but by an underlying metabolic problem or genetic setting predisposing me to this condition, which is exacerbated anytime I have an O, so it becomes part of my POIS.
My attention was attracted by the fact that you had a worsening of your symptoms under prednisolone treatment. Although prednisolone decreases the immunity response and may worsens an existing infection, I am not totally convince that in your case, it is indeed an external vector, be it viral or bacterial, that has been the cause of this worsening, and, consequently, of your chronic symptomatology. I see another possibility, which, of course, implies personal views on what POIS is, although based on scientific grounds. Some liver enzymes have their activity modified by endogenous cortisol (hence, by prednisolone, which act on the glucocorticoid receptors, which are the natural targets of the cortisol produced by the cortex of our adrenal glands). Of particular interest for POIS sufferers is the TDO liver enzyme ( Tryptophan 2,3-dioxygenase , see
http://en.wikipedia.org/wiki/Tryptophan_2,3-dioxygenase ) . TDO plays a crucial role in the regulation of the tryptophan metabolism, which is partly in cause in my POIS problem, and I suspect the same for many POIS sufferers. TDO enzyme is upregulated by stress/cortisol, the net effect being a higher rate of Tryptophan (Trp) transformation in niacin by the liver. This higher rate of Trp use by the liver decrease peripheral levels of Trp, so less Trp is available at the blood brain barrier, hence creating a shortage of Trp supplies for the brain. This is quite dramatic, since the brain depends on adequate supplies of Trp for the synthesis of both niacin and serotonin. Serotonin does not cross the blood brain barrier, so less Trp passing to the brain means less serotonin produced in the brain, provoking symptoms as fatigue, depression, mood swings, irritability, low self-esteem, emotional distress, anxiety, and the like ( the story of my life....but less and less, now !). Less niacin in the brain leads to brain fog, memory problem, lack of mental focus, and the like. In POIS, other enzymes are activated as well by the immune reaction involved, like a non-liver enzyme called IDO, also important in Trp metabolism. But in your case, with elevated ALT, TDO seems of particular importance.
You seems to have undergone intensive medical screening. I would be interested to know if you have been tested for fatty liver disease, a metabolic disorder in which ALT are elevated (
https://en.wikipedia.org/wiki/Fatty_liver ) . You do not mention regular intake of alcohol, so I would think about the non-alcoholic form of this disorder (
https://en.wikipedia.org/wiki/Non-alcoholic_fatty_liver_disease ). I think it would worth a look, in case you never think of this possibility. You could ask your physician about this (or your father, which I think I read is a physician
) If this would be the case, a good source of choline, like lecithin, which is cheap an reliable, is advised and would help with many symptoms
( FYI, see
https://en.wikipedia.org/wiki/Choline#Health_effects_of_dietary_choline ,
and
http://lpi.oregonstate.edu/infocenter/othernuts/choline/ ).
In any case, your high ALT is a sure sign that your liver in constantly under attack, whether it is a type of chronic hepatitis, a form of cirrhosis, or another hepatic problem. I would like to share with you some general advice that has been working well for myself, since I tend to have liver problems too, like I said earlier.
But just before, let me re-copy here, for anybody reading this, an important rule of this forum, as posted by Daveman: "POISCenter is not a substitute for professional medical advice or treatment. Always consult your physician and do not rely on the information in this site when making decisions about your health. The content in POISCenter is for information only and is not reviewed by medical professionals. Similarly, do not use POISCenter to give medical advice. You may share information about your experiences, but do not play the role of health professional." As I have already mentioned on this forum, I am a pharmacist, but not your pharmacist, an important distinction. When I give advice to my patients, I am professionally responsible for what I suggest. Not here. I basically share what works for me, if this could be of any help to others here, and I am participating in this forum because I am experiencing POIS personally, not because I am a health professional.
So, in case of liver problems:
- avoid alcohol as much as possible, as well as anything that is extensively metabolized by the liver, like paracetamol/acetaminophen, or else. In my case, I never take more than half a glass of wine at a time, unless I get drowsy, a sure consequence of my mild hepatic insufficiency (read "slow liver).
- avoidance of too much lipid intake at a time is also advised. I love cheese, but must eat just a little bit at a time, unless I want to feel drained and heavy !
- water, lots of drinking water (source water, not tap water with chlorine and all kind of added stuff), is very important in hepatic problems. I drink at the least one liter a day, but 2 liters is better. A sure sign that you do not drink enough water is that your urine is dark yellow. Drink water till your urine is almost clear as the toilet water, everyday (unless you take B complex or B vitamins, which will color your urine in yellow). Another sign of not enough water is an icteric complexion (jaundice-like), or having a yellowish sclera (the white of the eyes is tainted in yellowish green)
- Milk thistle is the friend of anyone having hepatic problems. Moreover, milk thistle has added benefits in POIS, since a substance in it (DHQ) is a TDO inhibitor ( according to my current understanding of POIS, it is a benefit ). I use it as part of my pre-O pack (the supplement I take before O, in order to prevent POIS symtmtoms) Milk Thistle is a great antioxydant source that has a particular affinity for the liver (
http://en.wikipedia.org/wiki/Silybum_marianum#Protection_from_Toxin-induced_liver_damage ) It is approved by the E Commission as a valuable help in case of hepatitis and cirrhosis. Whenever I take milk thistle, I always feel a significant gain in my energy level. I would be interested to see if this affordable supplement would help lower your ALT, as well as lower the pain in your liver area.
As a side note, i have noted that in the past, milk thistle had a specific side effect for me. Before meditation has become a dally practice for me, I was far from being centered, emotionally speaking. At that time, when taking milk thistle, the extra energy would most of the time translate in a slightly more elevated level of aggressiveness and irritability. But now, being much more calm and centered, thanks to daily meditation and other things like omega-3, I get the benefit of milk thistle without it messing with my social and familial life
- Artichoke and black radish are also valuable as liver helpers. I personally use supplements with those two plus milk thistle in it, and lots of water to fully ripe the benefits for the liver.
- avoid stress and high emotional activation level, in particular anger... I have experienced serious boots of liver problems following these, and not only because cortisol is influencing hepatic metabolism. Fully activated stress/fear response and its physiological consequences is not what is needed to help the liver!
- avoid fructose ( as in concentrated fruit juices, sweets, etc...), sucrose (which is half fructose) and avoid anything a=having high glucose-fructose syrup HGFS in it. This, in fact, is not good only for hepatic problems, it is also good for any POIS sufferer, and I would say that it would benefit anybody's health, since high fast sugars concentration are not natural and our digestive system is not adapted to it, yet.
Those basic things has been good for my hepatic health. Let me know if you decide to try some of these suggestions, in particular milk thistle, and lecithin.
Have a great day!
Quantum
