What's Wrong With You?

#626
#626
Weezer said:
Do you have to do a regular course on the antibiotics? When I was in the hospital, that's what I hated most. They were running two IV lines, pumping various antibiotics through me because they couldn't determine where exactly the infection was that had me running a fever. After a while, your veins start to burn. Probably sounds weird considering all that was going on with me, but that was what I hated most.

Is the clinic in Germany doing trials, or have they moved on to more of a treatment stage? Have you researched how to actually get into their program? I was just wondering if there were criteria you had to meet? And what exactly goes into the expenses for that kind of trip? I know Slice can be a bit prideful, but maybe we could start a fund in the Pub. Others have done it.

Thoughts and prayers are with you.
Click to expand...

I'm thankful for this port a Cath. My veins are dead and I don't have to be stuck so much.
I rotate different antibiotics each week to trick the bacteria. In addition to traditional medicine I do alternative medicine too. High dose vitamin c, Meyers cocktail, magnesium to counter act neuro symptoms.

I have contacted Klinik St Georg in Bad Aibling Germany. They have requested information on my history and lab readings.
They are treating Lyme very similar to cancer.
Treatments include whole body hyperthermia. They sedate you and heat you up to 104. I haven't run a fever in years. I run at 96-97.
Insulin potentiated Rocephin. The Lyme cell has a large number of insulin receptors. By giving insulin to the point of hypoglycemia, the cells are open doors and suck up the antibiotic.
Numerous other therapies. Some available in the US, but not all of them and certainly not in one place.

It is a humbling experience to ask for a fund me account. I know I would do it in a heartbeat for someone else, but to ask is.....ouch!!
 
#627
#627
Weezer said:
Do you have to do a regular course on the antibiotics? When I was in the hospital, that's what I hated most. They were running two IV lines, pumping various antibiotics through me because they couldn't determine where exactly the infection was that had me running a fever. After a while, your veins start to burn. Probably sounds weird considering all that was going on with me, but that was what I hated most.

Is the clinic in Germany doing trials, or have they moved on to more of a treatment stage? Have you researched how to actually get into their program? I was just wondering if there were criteria you had to meet? And what exactly goes into the expenses for that kind of trip? I know Slice can be a bit prideful, but maybe we could start a fund in the Pub. Others have done it.

Thoughts and prayers are with you.
Click to expand...

Also, it costs 17,500 for treatment. Need travel money and food so estimated about $20,000

Slice say you have NASH? Have you looked into Gluten intolerance? I am not allergic but am intolerant. I have PBC and new studies are showing Gluten can cause liver damage. Maybe a connection with NASH too.
 
#628
#628
Red13 said:
Also, it costs 17,500 for treatment. Need travel money and food so estimated about $20,000

Slice say you have NASH? Have you looked into Gluten intolerance? I am not allergic but am intolerant. I have PBC and new studies are showing Gluten can cause liver damage. Maybe a connection with NASH too.
Click to expand...

I hope and pray you get to make the trip and get help.
 
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#629
#629
Red13 said:
Also, it costs 17,500 for treatment. Need travel money and food so estimated about $20,000

Slice say you have NASH? Have you looked into Gluten intolerance? I am not allergic but am intolerant. I have PBC and new studies are showing Gluten can cause liver damage. Maybe a connection with NASH too.
Click to expand...

I haven't noticed any problems with gluten, but too much dairy has started to have an effect on me. I used to drink milk a lot, but anymore, it tears me up.

I'm not sure how you start a fund like that. I think Freak would be perfectly okay with it though. Maybe a mod could explain the process to us. Even if we only raised half, that would be a start.
 
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#631
#631
Red13 said:
I have Lyme Disease.
Was diagnosed after 4 years of multiple diagnosis and doctors, I was diagnosed in April 2015.
Did I mention a psychiatrist was one of my doctors because it was "all in my head"?
Turns out it was in my head, a brain infection.

I have a port a Cath in my chest for IV s, 7 antibiotics, prescriptions, supplements, etc.
It is late stage Lyme. Very little hope for a cure. I am left with debilitating fatigue, severe joint damage, brain fog, numbness and burning in my extremities, the left side of my face and lips are numb always, chronic sore throat, swollen lymph nodes, after little exertion I collapse, and more.
Haven't been to a Tennessee game in 3 years.

Hoping to fund a trip to a clinic in Germany having success with Lyme. The treatments are not available here.

Oh did I mention I also have PBC (primary biliary cirrhosis) Walter Peytons disease.

Ok start your violins......Now!!!
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I'll check to see if I can give you air miles from American for your airfare, maybe enough for slice too.
 
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#635
#635
I know in the Pub they've set up some kind of Paypal accounts in the past to help fellow VNers. I'm not sure how you do it, but it would be easy to email Freak and ask permission. Then it would just be a matter of logistics. Surely someone in the zone knows how to set up one of these accounts.
 
#637
#637
Weezer said:
I know in the Pub they've set up some kind of Paypal accounts in the past to help fellow VNers. I'm not sure how you do it, but it would be easy to email Freak and ask permission. Then it would just be a matter of logistics. Surely someone in the zone knows how to set up one of these accounts.
Click to expand...

Tex is working on it for me!

You guys are amazing.
 
#639
#639
Weezer said:
I haven't noticed any problems with gluten, but too much dairy has started to have an effect on me. I used to drink milk a lot, but anymore, it tears me up.

I'm not sure how you start a fund like that. I think Freak would be perfectly okay with it though. Maybe a mod could explain the process to us. Even if we only raised half, that would be a start.
Click to expand...


I had not idea how Gluten affected me until I stopped it for a couple weeks, then ate it.
Give it a try.
 
#641
#641
I remember strange little tidbits like that. It's the important stuff I always forget.
 
#642
#642
Out of work for at least the next few days, again. They think it's just dehydration from my diuretics(to keep the fluids off my liver), but they want to be sure. Had blood drawn for several tests today, and have to go back to have more drawn tomorrow. I hate this.
 
#643
#643
One of the more frustrating things about all of this is I can't push myself anywhere near as far as I used to be able to physically. Things I used to just be able to work through, they knock me down on my knees anymore. Makes me feel like a weakling. I don't like it.
 
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#644
#644
Red13 said:
I'm thankful for this port a Cath. My veins are dead and I don't have to be stuck so much.
I rotate different antibiotics each week to trick the bacteria. In addition to traditional medicine I do alternative medicine too. High dose vitamin c, Meyers cocktail, magnesium to counter act neuro symptoms.

I have contacted Klinik St Georg in Bad Aibling Germany. They have requested information on my history and lab readings.
They are treating Lyme very similar to cancer.
Treatments include whole body hyperthermia. They sedate you and heat you up to 104. I haven't run a fever in years. I run at 96-97.
Insulin potentiated Rocephin. The Lyme cell has a large number of insulin receptors. By giving insulin to the point of hypoglycemia, the cells are open doors and suck up the antibiotic.
Numerous other therapies. Some available in the US, but not all of them and certainly not in one place.

It is a humbling experience to ask for a fund me account. I know I would do it in a heartbeat for someone else, but to ask is.....ouch!!
Click to expand...

Lyme is a horrible disease, and I hate reading about anyone who has to deal with it. I was diagnosed about 2 years ago (Lyme, and the co-infections Babesia, and Mycoplasma), but had symptoms and bounced around to different doctors in the same way you did for a few years previously. I am not nearly at symptomatic as you, but it is still not fun. I hope you can find something to help you work towards remission. If you haven't already, you should read up on the Buhner Protocol. It's based around a combination of herbal antibiotics and herbs that help regulate the immune system. It doesn't help everyone, but I've had a lot of luck with it.

Good luck to you with your treatment. FYI, if there were a donation page set up, I would donate to it in a second.
 
#645
#645
Weezer said:
One of the more frustrating things about all of this is I can't push myself anywhere near as far as I used to be able to physically. Things I used to just be able to work through, they knock me down on my knees anymore. Makes me feel like a weakling. I don't like it.
Click to expand...

I just found this thread and admittedly only read the first few posts and the last page. I know next to nothing about liver disease. Is there treatment that will get you back on track?
 
#646
#646
Weezer said:
One of the more frustrating things about all of this is I can't push myself anywhere near as far as I used to be able to physically. Things I used to just be able to work through, they knock me down on my knees anymore. Makes me feel like a weakling. I don't like it.
Click to expand...

My wife says the lupus makes her feel this way. She can't make it through a day without napping from exhaustion.
 
#647
#647
jjay2518 said:
I just found this thread and admittedly only read the first few posts and the last page. I know next to nothing about liver disease. Is there treatment that will get you back on track?
Click to expand...

Not sure that I'll ever get back to 100% normal, but I think I can eventually get back to functional. They need to find a balance on my diuretics to keep the fluid off my liver, but not dehydrate me. My cirrhosis won't get better, it'll only get worse, but no one seems certain at what pace. Some day I'll have to have a transplant, but whether that's in years or decades, no one has said with certainty. I don't think they know. I think prognosis has a lot to do with a case by case basis. Different people respond in different ways. I know they said I'll be monitored closely going forward.
 
#648
#648
Weezer said:
Not sure that I'll ever get back to 100% normal, but I think I can eventually get back to functional. They need to find a balance on my diuretics to keep the fluid off my liver, but not dehydrate me. My cirrhosis won't get better, it'll only get worse, but no one seems certain at what pace. Some day I'll have to have a transplant, but whether that's in years or decades, no one has said with certainty. I don't think they know. I think prognosis has a lot to do with a case by case basis. Different people respond in different ways. I know they said I'll be monitored closely going forward.
Click to expand...

That sucks. I will say that functional but not totally normal can feel pretty good after you've been in worse shape for awhile though. I'm guessing you have to be pretty careful with your activities, food, liquids, etc too. Hopefully you respond well to the treatment and someday a transplant will fix you for good.
 
#649
#649
joevol33 said:
My wife says the lupus makes her feel this way. She can't make it through a day without napping from exhaustion.
Click to expand...

It's hard to have new limitations thrust upon you when you're used to being able to do more.
 
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