Taking CF medication - having bad reactions

J

joshannon

New member
Hi,
First of all want to say I admire anyone with CF, so much suffering that today my body is going out in sympathy with you.
I am a klinefleter, a genetic female trapped in a male body. Naturally very low testosterone, and very high estrogen.
I have for the last 21 days had IBS-D symptoms and have been going through every related disease taking the various blood tests, CT scans and stool tests to try and find the cause and a diagnosis. CF does tick all the boxes, but this a lifelong condition that you tend to get when you are young then I don't have CF, however I am on high does of CF medication:
1) Creon (150,000 UPS of Lipase; 64,000 UPS of Amylase, 5,000 UEP Protease)/day
2) Metronidazole 600mg /day
Know its not Pancreatic Cancer or Coeliac Disease
And while the test for Giardia came back negative my specialist thinks that it doesn't always present so I have to be a guinea pig and try this medication and see whether it will work or not.
Every since I started it- the Metronidazole (today), I have been experiencing terrible stomach cramps easily and pain in the chest.
I also got a reaction off the Creon last Sunday night - two nights ago (didn't take it last night on account I only ate a small piece of chicken), soaring fever.
I know that I will have complications due to being a klinefelter (usually do). For the most part I need to find herbal remedies to everything.
Only eat certified organic, additive-free food to eliminate allergic reactions, and improve my poor immunity.
Know you are all suffering terribly - but if you have any thoughts that would be great - thanks.
 
J

joshannon

New member
Hi,
First of all want to say I admire anyone with CF, so much suffering that today my body is going out in sympathy with you.
I am a klinefleter, a genetic female trapped in a male body. Naturally very low testosterone, and very high estrogen.
I have for the last 21 days had IBS-D symptoms and have been going through every related disease taking the various blood tests, CT scans and stool tests to try and find the cause and a diagnosis. CF does tick all the boxes, but this a lifelong condition that you tend to get when you are young then I don't have CF, however I am on high does of CF medication:
1) Creon (150,000 UPS of Lipase; 64,000 UPS of Amylase, 5,000 UEP Protease)/day
2) Metronidazole 600mg /day
Know its not Pancreatic Cancer or Coeliac Disease
And while the test for Giardia came back negative my specialist thinks that it doesn't always present so I have to be a guinea pig and try this medication and see whether it will work or not.
Every since I started it- the Metronidazole (today), I have been experiencing terrible stomach cramps easily and pain in the chest.
I also got a reaction off the Creon last Sunday night - two nights ago (didn't take it last night on account I only ate a small piece of chicken), soaring fever.
I know that I will have complications due to being a klinefelter (usually do). For the most part I need to find herbal remedies to everything.
Only eat certified organic, additive-free food to eliminate allergic reactions, and improve my poor immunity.
Know you are all suffering terribly - but if you have any thoughts that would be great - thanks.
 
J

joshannon

New member
I have every CF symptom - growing up as a kid (almost died as an 8 yr old with a temperature of 108 deg F - was put in a bath of ice - to drop the temperature). My mother an Emergency Care Nurse saved my life that night.

-except the skin tasting like salt - mind you i have never done a specific sweat test.

Had lung problems - always go bronchitis, spent weeks off school at a time and took months to clear the mucus.

My mother put me into every physical sport she could safely get a frail kid into, which slowly built up my lung capacity. The real issue though was a lack of testosterone growing up - did not start puberty - let alone finish it.

I am 50 - but look 30, one of the blessings of KS, staying young you entire life.

I did: Judo (Brown Belt - concussed during a competition ->(OUT), Scouts, Fencing, Cross-country running, Cycling (had an bad accident as a 8 or 9 year old - in hospital for 3 weeks), in fact got concussed more than 20 times one way or another - was very accident prone. My favourite sport was Table Tennis - was a nationally ranked player with a credited win against the No.1 of the day.

I was DXed as a klinefelter as a 20 year old. Strange I knew all about the condition, and was relived when I found out. It was sad for my mother, as I can never naturally father a child, and yes its a little sad when friends have children, it brings those thoughts back.

In the last 7 years - I have had nasal polyps after a lung condition just would not go away, was very sick from an airborne virus, for about 7 months - on deaths door, until speaking to a specialist discovered that I had nasal polyps. Thinking that this could be the cure for the illness - the mucus was trapping the germs, and removing the sinus blockage could improve matters. While it took a month after the surgery to drain the cavity behind the sinuses of blood, it did cure my chronic lung condition and I made a full recovery.

Had a bad cold in Australia a few years later followed by Glandular Fever, another month at home. Since then I had gall stones after extreme dehydration experienced by riding 1000 km on my bike to raise $$ for the youth of Sydney.

Had a hernia op that stopped me riding for 6 months - due to the pain, not just of the surgery but due to the needle that went into my leg muscle to stop my body reacting to morphine (I am allergic to Morphine). The pain from that injection was intense and it took months to resolve.

Since then had a colonoscopy 2.5 yrs ago and it looks like Im heading for another one.

Though all this as well as the 14 years of extreme stress with my wife's mental illness, at worst panic attacks every day at 4pm, when riding 270km a week and drinking plenty of fluid, exercise generally helps cure all my body pain.

About 2 years ago switched to an all organic, additive free diet - that has improved my immune system no end such that I don't get sick or pick up viruses.

I have been relatively free of illness until this bout. Even my gastroenterologist is lost for what this is. Might need to see an endocrinologist (my last one retired). Impossible to find any specialists that know anything about klinefelters syndrome, which is because while 1:650 of so males have the condition only 1:15,000 ever know they have it in their lifetime, which equals about 1 klinefelter if you are lucky per medical practice.

Klinefleters have a different brain structure to 46XX (females) or 46XY (males). Some areas are smaller (executive thinking), and some are bigger (parietal lobe) - enhanced visual spatial thinking.

I have learnt to utilise this aspect of my brain and I like to invent new things. Have a breakthrough Medical Patent - filed in 2003, that licenses for $10 million USD (for HP), a financial patent, and 4 image processing patents. Also have 100 automotive innovations in use by GM.

Somewhere along the way discovered that I had a growth in my brain in the roof of the spine, a cyst the size of a golf ball on the pineal gland. I treat this with noni juice to stop it from growing. Any knock now will cause it to go splat, blocking off the spinal fluid duct (I will be in a coma). I have devised a wrist band, with a mind map of all my known conditions and remedies that take for them. It will give emergency staff a heads up and go straight to treating me for a known condition. Have been on deaths row in an Emergency Room a few times and its a crazy case of trail and elimination. ER and Greys Anatomy are not far off the mark.

6 years ago became the first moderator on the largest klinefelter support forum in the world http://www.xxytalk.com, after connecting and conducting research for the other large support groups AAKIS on the east coast and KSA on the west coast and UK KSA group. Helped thousands of troubled new mums with the knowledge that they are carrying a klienfelter, not to listen to uninformed medical staff, not to abort their pregnancies. Klinefelter boys are the most loving and caring children they could have, and only in the worst cases have multiple complications.

Been to hospital already over this flare-up if that is what it is, don't want to go back - always worse in the evening. Probably won't get any sleep tonight as I also have chronic onset insomnia and take a small amount of medication to get to sleep.

Don't take Asthma preventers any more, as I found a cure to breathing more easily at night time and that is a small dose of either dutch salted licorice (one drop), or organic additive free licorice. Don't eat lots of it as it will affect your blood pressure.

That's enough - as I said you guys have it way tougher than me, but Im doing it tough at the moment.

Im a short klinefelter at 5'10" but as Im untreated Im skinny as a rake, and weight in at 138 pounds.

For a women smalll frame:
Height small medium large
5' 10" 132-145 142-156 152-173

I am in the middle of the range.

For a guy small frame Im way light
5' 10" 144-154 151-163 158-180

Anyway the symptoms are passing. Must enquire what the half life of these drugs are.

From wikipedia its 6-7 hrs and takes 1-2 days to clear out of the system. That fundamentally was my problem, the period between meals must be 8 hrs to avoid drug overlap.

Thanks for reading.

Take Care and God Bless.
 
J

joshannon

New member
I have every CF symptom - growing up as a kid (almost died as an 8 yr old with a temperature of 108 deg F - was put in a bath of ice - to drop the temperature). My mother an Emergency Care Nurse saved my life that night.

-except the skin tasting like salt - mind you i have never done a specific sweat test.

Had lung problems - always go bronchitis, spent weeks off school at a time and took months to clear the mucus.

My mother put me into every physical sport she could safely get a frail kid into, which slowly built up my lung capacity. The real issue though was a lack of testosterone growing up - did not start puberty - let alone finish it.

I am 50 - but look 30, one of the blessings of KS, staying young you entire life.

I did: Judo (Brown Belt - concussed during a competition ->(OUT), Scouts, Fencing, Cross-country running, Cycling (had an bad accident as a 8 or 9 year old - in hospital for 3 weeks), in fact got concussed more than 20 times one way or another - was very accident prone. My favourite sport was Table Tennis - was a nationally ranked player with a credited win against the No.1 of the day.

I was DXed as a klinefelter as a 20 year old. Strange I knew all about the condition, and was relived when I found out. It was sad for my mother, as I can never naturally father a child, and yes its a little sad when friends have children, it brings those thoughts back.

In the last 7 years - I have had nasal polyps after a lung condition just would not go away, was very sick from an airborne virus, for about 7 months - on deaths door, until speaking to a specialist discovered that I had nasal polyps. Thinking that this could be the cure for the illness - the mucus was trapping the germs, and removing the sinus blockage could improve matters. While it took a month after the surgery to drain the cavity behind the sinuses of blood, it did cure my chronic lung condition and I made a full recovery.

Had a bad cold in Australia a few years later followed by Glandular Fever, another month at home. Since then I had gall stones after extreme dehydration experienced by riding 1000 km on my bike to raise $$ for the youth of Sydney.

Had a hernia op that stopped me riding for 6 months - due to the pain, not just of the surgery but due to the needle that went into my leg muscle to stop my body reacting to morphine (I am allergic to Morphine). The pain from that injection was intense and it took months to resolve.

Since then had a colonoscopy 2.5 yrs ago and it looks like Im heading for another one.

Though all this as well as the 14 years of extreme stress with my wife's mental illness, at worst panic attacks every day at 4pm, when riding 270km a week and drinking plenty of fluid, exercise generally helps cure all my body pain.

About 2 years ago switched to an all organic, additive free diet - that has improved my immune system no end such that I don't get sick or pick up viruses.

I have been relatively free of illness until this bout. Even my gastroenterologist is lost for what this is. Might need to see an endocrinologist (my last one retired). Impossible to find any specialists that know anything about klinefelters syndrome, which is because while 1:650 of so males have the condition only 1:15,000 ever know they have it in their lifetime, which equals about 1 klinefelter if you are lucky per medical practice.

Klinefleters have a different brain structure to 46XX (females) or 46XY (males). Some areas are smaller (executive thinking), and some are bigger (parietal lobe) - enhanced visual spatial thinking.

I have learnt to utilise this aspect of my brain and I like to invent new things. Have a breakthrough Medical Patent - filed in 2003, that licenses for $10 million USD (for HP), a financial patent, and 4 image processing patents. Also have 100 automotive innovations in use by GM.

Somewhere along the way discovered that I had a growth in my brain in the roof of the spine, a cyst the size of a golf ball on the pineal gland. I treat this with noni juice to stop it from growing. Any knock now will cause it to go splat, blocking off the spinal fluid duct (I will be in a coma). I have devised a wrist band, with a mind map of all my known conditions and remedies that take for them. It will give emergency staff a heads up and go straight to treating me for a known condition. Have been on deaths row in an Emergency Room a few times and its a crazy case of trail and elimination. ER and Greys Anatomy are not far off the mark.

6 years ago became the first moderator on the largest klinefelter support forum in the world http://www.xxytalk.com, after connecting and conducting research for the other large support groups AAKIS on the east coast and KSA on the west coast and UK KSA group. Helped thousands of troubled new mums with the knowledge that they are carrying a klienfelter, not to listen to uninformed medical staff, not to abort their pregnancies. Klinefelter boys are the most loving and caring children they could have, and only in the worst cases have multiple complications.

Been to hospital already over this flare-up if that is what it is, don't want to go back - always worse in the evening. Probably won't get any sleep tonight as I also have chronic onset insomnia and take a small amount of medication to get to sleep.

Don't take Asthma preventers any more, as I found a cure to breathing more easily at night time and that is a small dose of either dutch salted licorice (one drop), or organic additive free licorice. Don't eat lots of it as it will affect your blood pressure.

That's enough - as I said you guys have it way tougher than me, but Im doing it tough at the moment.

Im a short klinefelter at 5'10" but as Im untreated Im skinny as a rake, and weight in at 138 pounds.

For a women smalll frame:
Height small medium large
5' 10" 132-145 142-156 152-173

I am in the middle of the range.

For a guy small frame Im way light
5' 10" 144-154 151-163 158-180

Anyway the symptoms are passing. Must enquire what the half life of these drugs are.

From wikipedia its 6-7 hrs and takes 1-2 days to clear out of the system. That fundamentally was my problem, the period between meals must be 8 hrs to avoid drug overlap.

Thanks for reading.

Take Care and God Bless.
 
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