Gogan's syndrome - any suggestions?

[Guest guest]

Hi,

Young guy in Canada was diagnosed with Cogan's syndrome.

My research shows that there are no two patients with the same symptoms or disease progress. Of the 150 cases documented most are called "a-typical".

The cause is unknown, no known cure. Cortisons seem to give temporary relief to about 20-50% for a few months, then it's back to square one.

My opinion:

Cogan's does not exist. A variety of environmental influences cause a variety of symptoms

Influence A reacts with B or C or D, etc. As allopathy cannot define the causes they bundle symptoms and give them a name.

Rife experts, any idea?

I paste the guy's history below plus some additional info from his father.

Cheers,

Wilfrid

History: (Born April 18, 1986)

Mid October I had a sore throat. I took ampycillin for 2 days and stopped because my sore throat got better. A couple of days later I developed diarrhea. In the beginning I was only going to the washroom 1-2 times a day (normal for me), but the bowel movement wasn’t normal, it was diarrheic. I didn’t have pain or upset stomach. By the end of October it got worse. I was going to the washroom around 4-6 times a day, and I had pain in my belly (intestine area). Stomach was still ok. By then it was diarrheic, but not too much, very very soft. As time went by it got worse. By the third week of November I was going to the washroom 10-14 times a day, I had very bad stomach and intestine pain and cramps. The bowel movement was like water, 90% of it was just water. A lot of it was clear, yellow, light color (when I was going 10+ times a day), no blood. I had no energy, I felt very very weak. I lost 20 lbs from middle of October until the

end of November. I started eating Activia yogurt (with BL culture). The Gastro Intestinal doctor I went to see told me to eat it. He said my diarrhea could be because of C Difficil toxin or because of arthritis, so he booked me for a colonoscopy. The last week of November, the diarrhea stopped (it took a period of 2 days to stop). I became kind of constipated (it was harder than my normal). The color was dark, but not black, no blood.

November 26th I developed a sore throat (my whole throat was hurting, not just in the tonsils area), jaw pain (the last 2 teeth on upper and lower jaw, left and right was hurting), ear aches and headache. I went to the family doctor, she wasn’t there but another doctor was there covering for her. He said he didn’t see a sign of infection, he didn’t see anything except for a slight redness (inflammation, very mild he said) (he pressed in my neck around adam’s apple and it hurt) so he told me to take Advil 2 pills, 3 times a day for 5 days. I took Advil extra strength (liquid gels). It was helping a little bit, but not much.

November 30th I woke up and my left ear hearing was muffled, it felt stuffed, like I had water in it or something (even though I didn’t). I was also spaced out, I felt disconnected, kind of confused, slight weightlessness in the back of my head. At 6 pm I developed severe vertigo. It lasted for 5 minutes. I sat down and relaxed, I got better. At 8 pm it started again, this time it was very bad. Everything was spinning from left to right very very fast. I could barely walk, I had to walk short distances by holding on the wall. I vomited 3 times in 1 hour. I also went to the washroom (2nd) about 2 times within 2 hours (diarrhea). That night I went to the hospital. They checked my blood, and saw that my white blood cell count was high. They gave me Gravol (anti nausea medicine) via IV. The doctor told me that it must be a viral infection, he said my ears looked fine. He said to go home and rest.

By now my throat was ok. The headaches had stopped.

I went home, but the vertigo wasn’t stopping. Everything was spinning and I had nausea.

December 1st I went to my family doctor. She said the same thing. It must be viral, but she couldn’t see anything, no signs of infection. She cleaned out the wax in both my ears. As soon as she did that, I developed very loud ringing in my left ear. My hearing was decreasing. She told me to keep taking Advil and Gravol every morning for my nausea. I developed night sweats, to the point that I had to change 2-3 times a night because it was like I was playing soccer. I developed mild fever (37.5 – 38 degrees celcius).

December 3rd I woke up and had very bad headaches again, left ear pain, jaw pain (upper and lower, both sides), and my head especially was hurting behind my left ear (the bone). The vertigo was still the same, the tinnitus was very loud, deafening, only on the left ear. I was confused and nauseous but not vomiting. Diarrhea had stopped.

December 3rd I went to see a ENT specialist at a walk-in clinic. He said my ears looked fine. My throat was slight red and he said it was viral and would go away, but it would take time, up to 4 weeks.

Dec 4th I did a colonoscopy up to half way through my intestine. The doctor said it looked good, there was nothing wrong with it and I didn’t need to do another test until I was 50 years old. I did a test for C difficile toxins, and it came up negative. I told him that I was dizzy and the hearing in my left ear was decreasing very fast, he said it may be due to a viral infection.

December 5th I woke up with pain in my right ear. The hearing was also muffled. Over the course of 5 more days my hearing decreased dramatically.

By December 10th I could barely hear anymore, I needed to read lips to understand people, and they had to speak very loudly. Some people I could not understand no matter how much they yelled, some frequencies I could not pick up and some sounds hurt my ears. The headaches were very bad. They were on the surface, my skull was hurting, on a scale from 1 to 10, the pain was definitely a 10. The vertigo had gotten a little better. The room didn’t spin anymore, but I was still very dizzy, I felt like I was drunk, no balance, it was difficult for my eyes to follow my head movements, even if they were slight small movements (this is still true).

December 9th I did an MRI at Trillium Hospital, it showed nothing.

December 10th I went to the Emergency in Sunnybrook Hospital. From there they transferred me upstairs and gave me a bed. During the time at the hospital I did an MRI of my head, which showed inner ear inflammation. I did a CT scan of my head, chest and abdomen. They only found inflammation in lymph nodes in the right lower quadrant of my abdomen. They wanted to do a biopsy, so I did an ultrasound which showed that the lymph nodes were not big enough for a biopsy procedure. In my medical records it says that the biopsy was done, but it’s not true, they didn’t. I am scheduled for another CT scan on February 13th to see if the lymph nodes have grown, which would make it easy for the biopsy procedure. They did Xrays of my chest, hips, and they found nothing abnormal. They did a Lumbar Puncture and tested for syphilis, fungus, meningitis, lipomeningitis etc etc (from what I can remeber) and they couldn’t find

anything wrong. They did blood tests blindly and could not find anything wrong. No HIV, no influenza, no lyme disease etc etc (blood test results are attached).

They gave me Prednisone (corticosteroids) 80mg a day for 1 week and then tapered down. I got a little better during this time. I could hear better in my right ear (left nothing), headaches went away (except for the headaches due to the Lumbar Puncture), earaches went away, the pressure in my head dropped (because before I felt a lot of pressure in my head and ears), my jaw and teeth stopped hurting, my throat stopped hurting. My eyes were good (they eye doctor saw me and checked everything, she said nothing was wrong with my eyes). They sent me to the Vestibular laboratory to check my balance mechanism, and they said I almost don’t have a balance mechanism anymore, it is very damaged, in my left ear it’s not working, and in my right barely.

I was released from the hospital without a diagnosis. They scheduled follow-ups with the ENT doctor, a Internal Medicine doctor.

On Dec 23 I stopped taking Prednisone (while tapering it). Within 24 hours I got worse, the hearing on my right ear decreased again, I was almost deaf, the headaches started again, my teeth were hurting again, and I swelled up on the surface, in the jaw/ear area, in my neck (all around), joint pain (especially knees), muscle weakness and pain etc. I went to the hospital again on the 25th and they gave me Prednisone 60 mg/day for 8 days, and taper by 20 mg every 2 days. Also Valaciclovir, 500 mg, 3x a day, for 2 weeks. I got better again, I could hear a little better on my right, nothing on my left, noises bothered me (my ears seem to be sensitive to sound). Then when I started to taper the Prednisone, I started to get worse. The less Prednisone I took in 1 day, the worse I became again, like the last time. Hearing dropped again, I swelled up around the ears, throat, back of neck. On the third last day of tapering the

Prednisone (20 mg a day) I swelled up a little especially around the eyes (cheekbones). The day after in the evening my left eye became red and I was tearing a lot and light bothered it a little bit. The following morning (last day of prednisone) I woke up and it was hurting a lot, very very sensitive to light. Also the vision in my left eye was white. Not all of it, only the left portion, the outer edge of my view, like a white fog was there, like a curtain was there. No double vision. I went to the eye doctor at Sunnybrook and she said I had Iritis. She prescribed Prednisonlone (the same as prednisone, but in drops for the eyes) 4 times a day, then an ointment for during sleep and Homatropine drops 2 times a day. She suggested Cogan’s Disease (among other possible diagnosis). This made my eye much better. They started me on Prednisone the day after I stopped taking the last from the previous prescription. The ENT doctor prescribed 60 mg a day for 10

days, then taper by 10 mg every 3 days. He also suggested Cogan’s Disease. I got a little better, but not like before. As soon as I dropped to 50 mg, I got worse, my hearing decreased to almost nothing again, my head became numb, I could feel my teeth numb. No energy. I went to the Internal Medicine doctor and he scheduled an appointment with the rheumatologist and told me to stay on 50 mg a day until I saw this other doctor. I saw the rheumatologist (who also saw me during my stay at the hospital) and he said he thought I had Cogan’s Disease, atypical case.

He put me on Methotrexate, 10 mg for the first week (which I took on January 31st), following by 20 mg a week from now on (every Sunday so the next dose is on Feb 7th), folic acid every other day, calcium 500 mg 3x a day, Actonel (Risedronate Sodium) 35 mg a week. The prednisone I am tapering by 5 mg every 2 weeks. I am to see another doctor, a colleague of this rheumatologist, who has more experience in this particular matter, for a second opinion on the Cogan’s Disease diagnosis. Feb 1st I dropped the Prednisone to 45 mg a day, and 1 day later my right eye became red too, it was hurting and sensitive to light also. I went to the eye doctor again and she said it was mildly inflammated and prescribed Prednisonlone 4 times a day, no ointment.

Right now I am using Prednisone 45 mg a day, Methotrexate 20 mg a week (start this week), Actonel 35 mg a week, Folic acid 5 mg a day, except for the day I take Methotrexate, Actonel 35 mg a week, Vitamin D 1000 IU a day, Calcium 500 mg 3x a day, Prednisolone eye drops 2x a day on my left eye, 4x a day on my right, no more Homatropine drops (I stopped 2 weeks ago), no more ointment for night.

The diarrhea comes and goes. Throughout all this time (even when I was in the hospital they tested samples and found nothing abnormal) it comes and goes, with very sharp intestine and stomach pain. Also some lower back pain too. When it starts, I will go 6-7 times a day. If I eat or drink something, my stomach will hurt a lot, and after my intestines too. The night sweats (which stopped at the end of december) start also when I get diarrhea. This will last for about 5-7 days, and then stop again. Everytime it starts, I stop eating red meat and that seems to make it better (I eat a lot of red meat). Between December and January it has come and gone 3 times. It started again last week and now it is going away, but this time it’s taking longer than before, I am only going 1-2 times a day to the washroom but it’s very soft. My stomach doesn’t hurt, as this goes away, the pain and cramps go away too, and the nightsweats go away too.

For two years almost, I have been stressed and have had anxiety everyday, everytime I leave the house. My heart beats faster than normal, I get shortness of breath sometimes, and it happens randomly, I could be sitting down. I sweat in my armpits even at -20 outside. Also for a little over a year I have felt generally very tired. Never have enough energy, even if I slept a lot. I have felt spaced out, disconnected. I have had memory problems, having a hard time remembering things, kind of like being sleepy or confused, not really paying attention to everything around me. I have been smoking 1 pack a day for almost 8 years. I stopped in December (as soon as I got sick).I used to drink occasionally, not heavy. I eat a variety of foods, my mom always takes care of me like that. When I was at the hospital I went down to 170 lbs (so I dropped 10 more lbs since end of November). Now I am back at 185 lbs and I feel comfortable at this weight.

I feel very weak. I am doing Vestibular rehab (exercises for my eyes, to help me regain my balance), and walking half an hour every day. I am also doing acupuncture which is helping me relax and feel better in general. I am trying to have a stress-free life. I still get anxiety. When I get upset, I get worse, my hearing drops right away and my head gets numb and the tinnitus gets louder (I forgot to mention I still have tinnitus, which has gotten a little better over the time, unless I get tired or upset or laugh a lot). I can feel my pulse inside my head. Sometimes I can feel it in my ear too, even hear it. When I feel worse, my eyes twitch more (I forgot to mention that one of my symptoms was that when the vertigo stopped, my eyes twitched left to right slightly, my vision along with it too). Almost 3 weeks ago, some days after I dropped to 50 mg of Prednisone, my balance got a lot worse. I had made very good progress, but it got very bad again, I

became more dizzy, weightlnessnes in the back of my head. Now I am stabilizing again, but I had to step down on the eye exercises. The exercises are: I hold a letter A at arm’s length and move my head left to right, up and down 1 minute each, 20 degree movement, focusing on the letter. Then I put the letter on the wall and stand 8 ft away and do the same thing. This is how I started in the end of December. Every week I progressed a little bit. One week I added looking at the A in my hand by walking forward. Another week I put the A on a page printed with a checker board (4 squares, 2 diagonal black, 2 white) and walked with it forward and backward and placing it on the wall and standing 8 ft away doing the same. Now I am down to holding just the letter A on my hand and just the letter A on the wall, no checker board, no walking. And I am having a hard time. The tinnitus has gotten a little louder over the past week. My hearing has also gotten better

on my left and right ear (I tested them this week at the hospital). It is sensorineural hearing loss that I suffer from. But my ears have also gotten even more sensitive (or I should say my right ear, since I cannot hear from my left) to sound as I hear better. Some sounds that are loud for me (but not for everyone else) hurt my ears. If I am exposed to noise for more than one hour, the tinnitus gets louder, my hearing goes down, my head goes numb, I get tired, confused, my balance gets worse. And when I say noise, it can be my own voice too, like in having a conversation with someone (very limited conversation). I have been losing hair everywhere on my body since I got sick. Patches of hair randomly on my arms, legs, chest, belly. The hair on my head has been falling too (a lot more than usual). In some places it is growing back (2 months after) and in some places it is not. On my father’s side they have a history of diabetes. On my mother’s side

heart problems and cancer.

November 2008 I got a throat infection, the doctors could not identify the cause (what it actually was that made me sick, no mums, or strep or the usual). I was in bed for a week with 40 degrees Celsius fever. I took amoxicillin. In February 2009 again I got sick, the same thing. Throat infection, in bed for a week with 40 fever. The doctors at the emergency could not find the cause, ampicillin was prescribed (which is were I got it from when I took it for two days in middle of October when I had the sore throat for the first time, I had some left over). They suggested I go to an ENT doctor to see if I needed to remove my tonsils because getting sick in my throat twice in 3 months was not normal. I asked the family doctor for a referral, she refused saying that it was normal. Before this I had not been sick in 10+ years. I don’t even get the flu. Mostly a runny nose for a couple of days and that’s it. When I was younger, 10 years

old up until 15-16, I used to get these shortness of breath episodes, completely random. I used to feel like I was going to faint, I used to lose color in my face and could not stand on my feet and the longer I stood, the worse I got and my vision got darker and darker, my head got lighter and my blood pressure dropped (I forgot what to but my mother used to monitor it). Lying down was the only thing that stopped it. When I came to Canada, in 2002 or 2003 (not sure of the year) it happened again and the doctor sent me for a stress test of my heart. It was good. They did and EKG, good. They taped a recorder on me for 24 hours to record my heartbeat, that was normal too. Ever since then I have gotten some episodes, much less frequent and not as bad as before. I have been very athletic back home (Albania). I used to play soccer since grade 4. Basketball since grade 5. 2-4 hours a day of sports. I went to a gym in grade 5 and did light weights and aerobics

mostly (flips and stuff).

I travelled to Dominican Republic on vacation for 1 week in September of 2008. I went with my brother, mom and dad and no one got sick. I worked roofing summer of 2004, 2006, 2007, 2008. 12 hours a day, 6 days a week. Very very hard labour, My body hurt every day.

In 2005 I injured my back by lifting very heavy weights, using my back as support instead of my legs. It was so bad that I could not stay in one position for more than 30 seconds otherwise the pain would be too much (made me almost cry). The doctor said my lower back was slightly inflammated in that area where it was hurting, she said it must be a nerver and it would go away over a period of 6 months to a year. She prescribed some anti-inflammatory medicine (I forgot what it was). My back got a little better, but ever since then I have lived with chronic lower back pain (lower right), sometimes the pain shoots down to my buttocks and right leg.

The nails in my hands get this bluish/purple color a lot of times. My feet get cold very easily, even with socks on. The acupuncture lady said the circulation in my body is very bad, especially in my feet. Ever since acupuncture, it has been getting better, so has the color in my fingernails.

Update: I respond to treatment with Prednisone. When I take high doses (60mg/day) my hearing gets better soon, but then when I taper, it gets worse. Now what is happening is that the more I do of this high dose, low dose, the slower I get better and my body is building a dependency on prednisone. 60 mg now doesn’t have the same effect as 60 mg in January for example.

When I get upset or stressed or anxious or when I don’t sleep well, or when I get hungry, any imbalance I may create makes me worse. My hearing goes down, my head gets numb (my skull) as if there’s pressure from inside, originating in the back of my head and spreading as far as my face the longer I am “not okâ€. The ringing in my ears goes up. I get tired right away, my vertigo (dizziness) get worse right away. My eyes hurt, then they start to get red. Resting helps. Also, I am sensitive to sounds. If I am exposed to sounds for a while (30 minutes minimum) like from the street, or from my own voice (If I am talking to people) or from conversations with other people, TV, anything really, that makes my ears hurt and makes my head hurt and then I get worse because of this also. Diarrhea has been better. Once a day and (1 being normal and 10 being water) I would say a 3 and it’s not dark/black anymore.

****When I developed diarrhea I had a lot of heartburn and I was burping excessively. And I would feel my stomach fluid in my throat and it would burn for a long time. This happened from Mid october until end of november.

****Update April 15, 2010: It’s been 3 days that I don’t have diarrhea. But I am having a hard time going. I feel constipated.

***** today diarrhea again

***Also, for the past month I have been taking 60 mg/day prednisone and I have not responded as good as usual. My hearing in my left ear has started to come back (I can hear my fingers if I snap them very hard close to my ear). My right ear has made maybe 5-10% progress. very very little progress. Before my right ear hearing responded better, I could hear much better than now. It seems the prednisone is not having the same effect anymore. Maybe it is because I have been taking it for so long that my adrenal glands are lazy now, which means that even though I am taking 60 mg prednisone, my overall cortisol concentration in my body is lower due to lack of production in my adrenal glands.....?

Father's comments:

In september 2008 he travelled with us to Dominican Republic. He had a little bit of loose bowel movement for 2-3 days. Maybe because the food at the resort was local.

In the summer 2009, before he got really sick, he worked in Northern British Columbia, in a town called Fort . He worked 100 km away from it, in a natural gar plant/extraction field. He was exposed to natural gas (also some form of H2S, very very little), Cortron, Methanol, other carcinogenic chemicals, corrosion inhibitor chemicals (cortron), cleaning agents, fumes from very big engines used to power compressor stations in gas plants (to compress the gas), triethylene glycol (got some spilled on him twice, stayed on his body for 30-60 min before he washed up). This was in a forest, so a lot of wild animals like moose, bears, ravens, deer, a lot of mosquitoes, which bit him, and he used some sprays on his face and neck area (mosquito repellants) which he says were very toxic.

There are power lines going accross a field 500 metres away from our apartment building.