Ideas on Herpes Induced POIS

[demografx]

Unfortunately, only post-orgasmic headaches have been written about (a case study or two), but not about post-orgasmic brain inflammation.

That’s my guess as to why a doctor might not understand the difference.

[Nas]

Unfortunately, only post-orgasmic headaches have been written about (a case study or two), but not about post-orgasmic brain inflammation.

That’s my guess as to why a doctor might not understand the difference.

That's true, but brain inflammation is still brain inflammation and a doctor can at least perscribe a remedy for the brain inflammation as the main symptom.

[demografx]

Yes, Nas, that makes sense. Hopefully, the treating doctor will not look at POIS superficially, and get to the point of looking deeper and correctly identifying the brain inflammation.

You may sense that I don’t trust today’s medical POIS-and-related-symptoms’ diagnosis with great confidence

[Nas]

Yes, Nas, that makes sense. Hopefully, the treating doctor will not look at POIS superficially, and get to the point of looking deeper and correctly identifying the brain inflammation.

Exactly, if we confuse the doctor with POIS as an illness he might overlook our important sympotms, but if we came to him complaining from the sympotms without going too deep on our post orgasmic issue perhaps he can focus on what truely matters which is finding a remedy for brain inflammation.

[certainlypois2]

Yes, Nas, that makes sense. Hopefully, the treating doctor will not look at POIS superficially, and get to the point of looking deeper and correctly identifying the brain inflammation.

Exactly, if we confuse the doctor with POIS as an illness he might overlook our important sympotms, but if we came to him complaining from the sympotms without going too deep on our post orgasmic issue perhaps he can focus on what truely matters which is finding a remedy for brain inflammation.

I am going to start saying i have chronic fatigue syndrome and i will like to fix the brainfog aspect of it by reducing brain inflammation.

[certainlypois2]

hey nanna you said the antiviral+celebrex combination is already calibrated with dosage and dose timing but when i read those papers i dont see any specifics on dosages.

[Hopeoneday]

Is this posible why small dose of benzos help a lot to me.
Acute stres and mybe geneticly mutated C-realising hormone play role to Imunnity suppresion

https://www.ncbi.nlm.nih.gov/pubmed/8298983

https://nyaspubs.onlinelibrary.wiley.com/doi/abs/10.1111/j.1749-6632.1990.tb40499.x

[nanna1]

Hey certainlypois2,

Sorry for not including the Celecoxib + Famciclovir Trial info in the grant post. It is located in their patent "FAMCICLOVR AND CELECOXIB COMBINATION THERAPY KIT FOR COGNITIVE DYSFUNCTION (US20160199377A1)" on page 11 of the patent (page 17 of the .PDF): section F (Combinations and Combination Therapy): example A (Human Clinical Trials).

Twice daily with food:
-celecoxib: 200mg
-famciclovir: 500mg first week then 250mg maintanence dose

From the patent:

[certainlypois2]

Hey certainlypois2,

Sorry for not including the Celecoxib + Famciclovir Trial info in the grant post. It is located in their patent "FAMCICLOVR AND CELECOXIB COMBINATION THERAPY KIT FOR COGNITIVE DYSFUNCTION (US20160199377A1)" on page 11 of the patent (page 17 of the .PDF): section F (Combinations and Combination Therapy): example A (Human Clinical Trials).

Twice daily with food:
-celecoxib: 200mg
-famciclovir: 500mg first week then 250mg maintanence dose

From the patent:

thanks

[Hopeoneday]

Thanks Nana, those figs explane a lot, it is worth to try.

[nanna1]

Here are some of my medical test results. All of these test were taken after I started noticing I get sick after orgasm. None of the test were timed around a specific orgasm, nocturnal emission or any other POIS inducing event.

1. Summary of symptoms:
POIS: My POIS symptoms mostly occur on the left side of my body. Before I started taking supplements, the symptoms would last for 5-8 days. The POIS pain starts in the center of my brain in the left hemisphere towards the base of the brain. The pain/dullness spreads to the left ear, behind the left eye and down the left-back side of my neck in the spinal cord area. I then get a runny nose in my left nostril with occasional sneezing (rhinitis). Pain can then extend to the upper left back and left side of my stomach (IBS symptoms) and is usually accompanied by diarrhea. Pain would sometimes extend to other parts of the left side of my body. After about 24 hours post-orgasm some of the POIS symptoms (like headaches and fatigue) could be experienced on both the left and right side of my body. Acne develops on my face and back, and new freckles develop on my face. Also, there were memory and concentration problems.

Exercise: Exercise caused sneezing and runny nose in my left nostril. I also had exercise induced IBS with diarrhea, unusually long DOMS/recovery and chronic fatigue (5-8 days). I still can get fasciculation shortly after resistance exercise.

Sensory/scratching: Additionally, scratching my chin/beard on the left side of my face reproduces all the POIS symptoms that I would normally get from orgasm. I sometimes have a compulsion to scratch my beard when I am stressed or trying to concentrate on something or am sleep deprived. I've noticed that scratching and grooming hair on my face (head, eyebrow, beard) produces some affect that keeps me alert and helps me think when I am trying to figure something out (almost like caffeine). However, it is only when I repeatedly scratch my chin on the left side that I get really sick.

  I can say that there are short-term and long-term effects of my stack. In the short-term, my stack relieves all of my symptoms. When I stop taking the stack most of the POIS symptoms slowly return within a week.

Update May 2018:
  However, I have experienced long-term relief in two areas even when I do not take supplements. I currently do not experience any exercise induce POIS-like sickness. There is no DOMS anymore from exercise < 45 mins. I also no longer experience POIS on the right side of my body. If I stop supplements in my stack, POIS symptoms will only be on the left side of my body with the exception of a headache which is on the left and right side.

Update March 2019:
  When I first started posting on this forum in mid-2017, my symptoms fell into POIS clusters 1, 3, 4, 5 and 7. Now I no longer experience POIS clusters 1 and 7 even when I do not take my supplement stack. Also even when I am not following the stack-diet, the symptoms that I had in clusters 3 and 5 are reduced significantly and almost unnoticeable. I think that I still have POIS, but over the past year many of my natural symptoms have been disappearing.
 
2. Skin prick allergy test:
  I am allergic to the cedar tree, seasonal grass (bahia, bermuta, timothy, johnson), fungus (alternaria, bipolaris, phoma, stemphylium, epicoccum), and cat fur.
  I do not have food allergies. I do not have gluten or dairy allergies. I also do not have an allergic reaction to candida. (test 1, test 2)

3. Autoimmunity blood test:
  I have been tested for autoimmune diseases twice. My systemic antibodies are normal (test 1 (bottom of page), test 2, letter 1, letter 2). This may not exclude local autoimmunity in a specific region of the brain. These test do not include anti-acetylcholine and anti-NMDA receptor antibodies.

4. Virus and bacteria test abnormal:
  I tested negative for HIV, HSV-1 and HSV-2 (test 1 (bottom of page), test 2, letter). I tested negative for hepatitis A, B and C (test 1 (bottom of page), test 3). I tested negative for the bacteria H. pylori (see 7. Gut health and IBS: section). I tested negative for EBV (HHV-4) and the Lyme disease (Borrelia burgdorferi), but I tested positive for VZV (HHV-3), CMV (HHV-5) and HHV-6 (test 4, test 6, test 7). I tested negative for the bacteria Toxoplasma gondii (test 5).

5. Urine test:
 My urine is alkaline. An indicator of reproductive tract infection, leukocyte esterase, is normal. (test)

6. Hormone Tests (Thyroid and Steroid) and B12:
  My thyroid levels are normal and my vitamin D levels are normal. (test 1, test 2 - top of page). My vitamin B12 levels are normal (test 3 - middle of page).
  Testosterone, progesterone, estrogen and luteinizing hormone are normal, but sex hormone binding globulin (SHBG) is high (test 4).

7. Gut health and IBS:
  My POIS symptoms were overlapping with stomach pain on my left side. I was diagnosed with irritable bowel syndrome (IBS).
  I receive a ultrasound of my stomach where my IBS symptoms were. The ultrasound image did not show any physical abnormalities. (doctors summary 1)
  I also received a colonoscopy. No tumors or ulcers were found. There does not seem to be any inflammation in my stomach associated with the IBS symptoms (doctors summary 2).
  I also tested negative for H. pylori 3 times. (doctors summary 1)

8. Comprehensive metabolic panel:
  My electrolyte and albumin levels are normal (test)

9. Complete Blood Count abnormal:
Red blood cell (RBC) count, hemoglobin and hematocrin levels fluctuate between test, but tend to be on the low side: (test 1, test 2)
Iron levels are normal: (letter)
White blood cell (leukocytes, granulocytes) counts (WBC and Gran) are consistently low: (test 1, test 2, test 3)
The word Granulocyte is sometimes used to refer to Neutrophil.
RBC sedimentation rate (SED RATE) is normal, indicating that I do not have systemic inflammation: (test 2 - top of page)
Platelet counts are normal: (test 1 - middle of page, test 2 - middle of page, test 3 - PLT, test 8)
Other white blood cells (leukocytes, immune cells) such as Monocytes (MONO), Eosinophil (EOS), and Basophil (BASO) are normal: (test 2 -bottom of page, test 8)
Urine test show that the leukocyte esterase levels are normal. So it does not seem that I have a urinary or prostate infection: (test 4 - bottom of page)
reticulocyte (RETIC) levels are normal: (test 5 - bottom of page)
reactive lymphocyte (LYMPH) levels are normal, but the ratio of LYMPH:GRAN is high: (test 6, test 7, test 3 - LYMPH % center of page)
Update: CBC test results
Lymphocyte subset test (Outside of POIS) (test normal):
-T cells (CD3 normal, CD8 normal)
-B cells (CD19 normal)
-Natural Killer cells (NK cells) (CD16+CD56+)
Update: more CBC test (test 9, test 10)

10. Cholesterol and lipids:
  My cholesterol levels are all normal (test).

11. Brain scan:
  My first brain MRI was completely normal (summary). I was diagnosed with a saccular aneurysm by a neurologist (summary of MRI and MRA/angiogram).

12. Methylation/homocysteine blood test:
  I stopped taking the majority of my supplement stack (choline/B-vitamins/omega-3/CLA) more than a week prior to getting the blood test. No creatine loading. No creatine more than 3 days prior to the blood test. Avoided other supplemental sources of B-vitamins like sport drinks. The only supplement I took the day of the test was vitamin D3. My homocysteine levels are normal (test).

13. Mast cell activation syndrome and mastocytosis:
  (Tryptase blood levels) This test was taken at the same time and under the same conditions as the homocysteine test above. I was not experiencing POIS at the time of this test. My tryptase levels are normal (tryptase test). At a later date, I also took a histamine blood test while not in a POIS state. My histamine blood levels are normal (histamine test)

SUMMARY:
These test were not timed around an orgasm, exercise or any specific stressful event.

• Food allergy test were negative. So I do not have gluten or dairy allergies. Seasonal grass and fungus allergy test were positive.
• Viral infection: HIV, HSV-1, HSV-2, HEP-A, HEP-B, HEP-C, EBV/HHV-4 virus test are negative. Herpes virus VZV, CMV, HHV-6 test are positive
• Bacterial infection: Lyme, Helicobacter pylori and Toxoplasma gondii test are negative
• Hormones: vitamin D, testosterone, progesterone, estrogen and luteinizing hormone are normal. SHBG is high
• Systemic autoimmune antibody test (ANA panel) were negative
• Systemic inflammation test (SED RATE) were negative
• No physical damage to my stomach (ulcer, irritation, local-infection or cancer) dispite of being diagnosed with IBS
• leukocyte esterase and non-specific test for genital tract infection : negative
• Blood platelet levels are normal
• Red blood cell, hemablobin, hematocrin, iron levels fluctuate
• Granulocytes(Neutrophil) counts (WBC and Gran) are low
• Other white blood cells (immune cells) such as Lymphocyte (LYMPH), Monocytes (MONO), Eosinophil (EOS), and Basophil (BASO) are normal
• Lymphocyte subset (T cells, B cells, NK cells): normal
• MRI of brain tissue is normal. MRA/angiogram of blood vessels shows a small bulge in an artery in the left side of my brain. A possible saccular aneurysm.
• Official Neurologist Diagnosis: Hemicrania continua of the trigeminal autonomic cephalalgia group
• methylation/homocysteine levels are normal
• tryptase blood levels: normal

[Nas]

Interesting Nanna,

If you can please post your results here: http://poiscenter.com/forums/index.php?topic=2684.msg24024#msg24024 
for future ease of access.

autoimmunity blood test:
I have been tested for autoimmune diseases twice. My systemic antibodies are normal. I do not have a systemic autoimmune disease. (test 1 (bottom of page), test 2, letter, letter)

You say here that you do not have systemic autoimmune disease, but were you on POIS when you've done the test? because I'd imagine inflammation is a symptom of an active POIS.

My reactive lymphocyte (LYMPH) levels are very high (test 5, test 6).

Hmmmm, very interesting; I wish you would make a further comment upon that because that can be an evidence of a viral illness.

I do not have test for herpes viruses VZV, EBV, CMV, HHV-6 yet

We'll be waiting anxiously! Cause that would do us a lot in proving the theory!

[nanna1]

Hi Nas,

Thanks for telling me about the "Gather and Post Here Your Medical Tests Results" thread. I posted a link there to the above test results.

You say here that you do not have systemic autoimmune disease, but were you on POIS when you've done the test? because I'd imagine inflammation is a symptom of an active POIS.

  I did not time the test around an orgasm or exercise. In these test, I may be or may not be experiencing POIS symptoms. In most of these cases, I just went to the doctor when I had time or when they could schedule me. So it is still possible that an orgasm causes events leading to temporary inflammation.
  The lack of autoimmune antibodies indicates that the cause of my POIS is probably not a general property of the immune cells themselves. So if or when the immune system is activated, it is responding to something external to the immune system. Also, because my sedimentation rate is normal, the cause of my POIS most likely does not cause inflammation outside of the brain unless there is an orgasm. The sedimentation rate test is not a conclusive test, but it is a standard indicator of systemic inflammation. There still could be autoimmune antibodies that are being produced in the brain but do not cross the blood-brain-barrier (BBB). I am not sure if a blood test can show detailed immune response in the nervous system because of BBB.

My reactive lymphocyte (LYMPH) levels are very high (test 5, test 6).

Hmmmm, very interesting; I wish you would make a further comment upon that because that can be an evidence of a viral illness.

  My lymphocyte test (LYMPH) are consistent with Muon's test. His test showed abnormal T (Th-1,2) cells which are the source of chemokines (IL-8, IFN-gamma, etc...). Lymphocytes are a class of immune cells that include B cells, T cells and NK cells (see table in White Blood Cell: Types). The test the doctor ordered for me do not differentiate between B, T, and NK cells to see which ones are elevated, but I will try to get a doctor to order a more detailed lymphocyte and basophil test.

I do not have test for herpes viruses VZV, EBV, CMV, HHV-6 yet

We'll be waiting anxiously! Cause that would do us a lot in proving the theory!

I agree that the VZV, EBV, CMV, HHV-6 test are important, but they are also expensive. The cheapest price I could find in my area was $200 (USA) each. That is $800 total minimum. I am trying to get a doctor to order the test for me and hopefully the insurance company will pay for it. I wish we could create some fund to subsidize/reimburse these test.

Thanks for your great questions! 

[nanna1]

  I saw a new neurologist today and gave him all of my previous medical records, including brain MRIs and MRAs not shown above. I described my symptoms in detail, but I did not share any theories or science that I have researched. I wanted his unbiased assessment of the test results and symptoms. The neurologists official diagnosis is hemicrania continua of the trigeminal autonomic cephalalgia group. I looked this up and trigeminal autonomic cephalalgia is a group of neurological diseases. Hemicrania continua is the sub group. He prescribed the medication, Zonisamide, as a preventative.

  Also, I had another complete blood count (CBC) test ordered (CBC test results). This test was ordered the day after (about 12 hours) an orgasm. I was not experiencing POIS symptoms the day I took this blood test. The majority of my blood test improved. My red blood cell (RBC), hemoglobin, hematocrin and lymphocyte levels are normal. My neutrophil (WBC, GRAN) numbers are still low.

[Muon]

IL-8 induces chemotaxis of neutrophils. It wouldn't surprise me if your IL-8 level is elevated nanna.

[FernandoPOIS]

I have the herpes simplex virus.
Another statistic for a possible study.
I believe in this theory. It can be damaging our nerves and thereby altering the response to the orgasm event.

[nanna1]

  Interesting correlation Muon, you are right that IL-8 is one of the main chemokines for neutrophils. Maybe I should get that checked! I plan to order some more detailed test (including virus test) within the next 2 weeks.  I have been looking at your post on Parameter input from members for ideas on which test could rule out certain potential causes of POIS. My strategy is to do process of elimination to rule out certain causes. I do not want to prove the correct cause. I will rather try to disprove the wrong causes. I am open to any other blood test selection strategies.

  Thanks Fernando for sharing about your HSV. That is valuable information.

  Last Friday, I went to see a neurologist. I gave him all of my medical records and described my symptoms without mentioning any theories or biochemistry of the immune system. I did not want to bias him because I was hoping that he could give me some new ideas or information that I did not already know. He diagnosed me with hemicrania continua of the trigeminal autonomic cephalalgia group. This headache is cause by excitation/stimulation of the trigeminal nerve in the brain. I did some research on this type of headache and it is associated with watery eyes, nasal congestion and/or runny nose. The trigeminal nerves stimulation by arousal is associated with orgasm (and coitus fantasy) induced sneezing (Ref 1, Ref 2). Not all the reported symptoms match my symptoms, but I just wanted to share this as a potential lead on what might cause POIS.
  Towards the end of the doctors visit (after his diagnosis), I asked the neurologist if hemicrania continua could be caused by a viral trigeminal nerve infection. He said that there is a hypothesis that it could be caused by viral infection, but that hypothesis remains controversial. He said that hemicrania continua is idiopathic, meaning that the official cause of this type of headache is unknown. I put a picture of the trigeminal nerve at the end of the POIS as a location-specific herpes infection post (nerve outlined in orange color).

[Hopeoneday]

Hi nana, does your neurologist mention enything about yours symtomes from excercise and posible couses of this by spreading of yours aneuryasm?

[nanna1]

Hi Hopeoneday,

  I did not talk much with the doctor about the exercise component, but there were notes about exercise related symptoms in the medical files I gave him. As far as the brain MRI goes, there is some doubt about whether it is an aneurysm or an infundibulum. This is discussed at the bottom of the report (MRI angiogram summary). The second neurologist basically just gave a disease diagnosis and ordered another brain scan. So I still do not fully know what is going on with that blood vessel. However all the other blood vessels are normal, blood flow is normal and they did not find any other abnormalities. So it is not a systemic problem with my blood vessels.

  My guess is that the 2.4mm aneurysm (or infundibulum) is very near the location of a nerve infection. The immune system uses histamine to open the blood brain barrier so that immune cells (neutrophils, T cells) can enter the brain and attack the pathogen. So it seems like the process that allows immune cells to enter the brain also inflames the blood vessel at that location. This is my guess for why that aneurysm is there. So it would be something analogous to what happens for other types of tissue infections.

figure from: https://courses.lumenlearning.com/microbiology/chapter/inflammation-and-fever/

figure from: http://www.macmillanhighered.com/BrainHoney/Resource/6716/digital_first_content/trunk/test/hillis2e/asset/img_ch39/c39_fig04.html

  This blood vessel is in the left side of my brain, which is the same side as where most of my symptoms are experienced. However, the neurologist did not think this blood vessel is the cause of my POIS. Right now we are not sure what is going on with the blood vessel. But it could be the result of an immune response to a pathogen or some sort of blood pressure abnormalities.

[Muon]

Something that caught my eye today:''PGD2 plays a role in the attraction of neutrophils (chemotaxis)''
https://en.wikipedia.org/wiki/Prostaglandin_D2