Kathryn in Mn

snommintj

Hey, I don't want to spook you, but I was curious if you've had any run ins with ticks lately. The symptoms you described and their durations sound eerily close to Lyme Disease. I have some experience with it and it is easily treated with antibiotics if you begin treatment during or immediately after phase 1 of it's progression. Please don't think I'm diagnosing you, that isn't the case. But it might be something you should look into.

snommintj

just checked a medical website and copied this little statement
Patients often can't recall the tick bite (the ticks can be as small as the periods in this paragraph). Also, they may not have the identifying rash to signal the doctor. More than one in four patients never get a rash. The redness of the skin is often accompanied by generalized fatigue, muscle and joint stiffness, swollen lymph nodes ("swollen glands"), and headache resembling symptoms of a virus infection.

abrub

snommintj said:

just checked a medical website and copied this little statement
Patients often can't recall the tick bite (the ticks can be as small as the periods in this paragraph). Also, they may not have the identifying rash to signal the doctor. More than one in four patients never get a rash. The redness of the skin is often accompanied by generalized fatigue, muscle and joint stiffness, swollen lymph nodes ("swollen glands"), and headache resembling symptoms of a virus infection.

I never saw the tick that got me...
I had Lyme disease many years ago - no recall of the tick, no bull's-eye rash.

Always worth looking into.

Kathryn_in_MN

thanks
Thanks, but I don't think it could be Lyme disease. I checked into that. I also mentioned something in the Rickettsia group, but that doesn't fit quite right either. Shingles was another possibility, and it did look a lot like that. But in the wrong places. Shingles attacks along a nerve line and on one side of the body. It would normally be on the palms of the hands - it doesn't hit the backsides of the fingers.

For me the rash was extremely painful on my fingers. First red, then blisters, then crusted over, and now most has peeled off. I saw a GP yesterday who said it looked like a chemical burn. But I know it was not. Then there are the two strange spots on my arm. Fingers on both hands, but arm is only one. Those didn't hurt like the fingers. Very odd stuff. I did get headaches, fatigue and really awful joint pain. But the fatigue is not as bad now. (I do still have a lot of fatigue, but I'm not sleeping well due to the pancreatitis, so I think that is the issue.) My joints started getting a lot better this week. I don't look like I'm 110 years old when I try to move now! The doctor said she'd never seen or heard of anything with all my symptoms - after looking at my hands and arm. I still have the one circle by my wrist which is red, but has shrunk, and only had tiny blisters - they didn't pop and crust like the fingers. It is not as bright red as it was. And the big smiley face pattern farther up my arm turned tan. It doesn't seem to be going away at all. Neither one of these hurt or itch or anything. They are just there. (The one by the wrist did hurt at first and till after the blistering, but now nothing.)

I probably had a weird virus. Now the question is, did the virus cause pancreatitis, or have I had it a lot longer? Back when omeprazole quit helping me, even at double doses, it may be because I had developed pancreatitis. It definitely flared last week, and was worse then.

I'm so happy I'm NED! But I'm a little ticked off to be dealing with pancreatitis right now. I can't get into my GI doctor - he is booked solid till July. Yesterday they couldn't find anything with another doctor in either of their offices close enough for me to travel to, until June 22. So I went to my primary clinic yesterday. The doctor there told me that my lipase level at 366 wasn't too bad - yes it is a big concern, but some bad cases of pancreatitis the level goes over 1,000. Yikes! She said there is nothing they can do for me. The only treatment is to try to rest the pancreas. If they do it in the hospital they put you on IV with nothing by mouth for a few days. Then they try clear liquids. If that is tolerated without making the enzyme production skyrocket again, you move up to soft liquids, then to soft foods, etc. If not tolerated you go back to nothing by mouth. If this goes on for too long, you need nutrition via TPN. For that you need a central vein. I'm scheduled to get my port out next Thursday. But she cautioned against that. If I end up needing TPN, it would suck to have to get a picc line because I'd just had my port out.

So I'm treating this at home, trying to avoid the hospital. I have to skip the "nothing by mouth" and move to clear liquids. Just water yesterday. They rechecked my enzymes and just called me now. My lipase dropped to 126, and amylase to 91. Still elevated, but a nice drop. I think that is very promising and means staying off food is helping. I've had green tea today, and I'll add some Gatorade or something else later. If all is going well, I can move to soft liquids tomorrow.

I'm double booked for next Thursday. I'll be keeping one appointment or the other. One is to remove my port, and the other is with another GI doctor that could get me in - that was the only appointment (due to cancellation this morning). I'm waiting for a call back with advice from the NP that works with my GI Dr. If this seems to be resolving do I go ahead and get the port out? Or is there worry of recurrance, so I should keep it for a while just in case? I just want to be done with everything and move forward.

msccolon

Kathryn_in_MN said:

thanks
Thanks, but I don't think it could be Lyme disease. I checked into that. I also mentioned something in the Rickettsia group, but that doesn't fit quite right either. Shingles was another possibility, and it did look a lot like that. But in the wrong places. Shingles attacks along a nerve line and on one side of the body. It would normally be on the palms of the hands - it doesn't hit the backsides of the fingers.

For me the rash was extremely painful on my fingers. First red, then blisters, then crusted over, and now most has peeled off. I saw a GP yesterday who said it looked like a chemical burn. But I know it was not. Then there are the two strange spots on my arm. Fingers on both hands, but arm is only one. Those didn't hurt like the fingers. Very odd stuff. I did get headaches, fatigue and really awful joint pain. But the fatigue is not as bad now. (I do still have a lot of fatigue, but I'm not sleeping well due to the pancreatitis, so I think that is the issue.) My joints started getting a lot better this week. I don't look like I'm 110 years old when I try to move now! The doctor said she'd never seen or heard of anything with all my symptoms - after looking at my hands and arm. I still have the one circle by my wrist which is red, but has shrunk, and only had tiny blisters - they didn't pop and crust like the fingers. It is not as bright red as it was. And the big smiley face pattern farther up my arm turned tan. It doesn't seem to be going away at all. Neither one of these hurt or itch or anything. They are just there. (The one by the wrist did hurt at first and till after the blistering, but now nothing.)

I probably had a weird virus. Now the question is, did the virus cause pancreatitis, or have I had it a lot longer? Back when omeprazole quit helping me, even at double doses, it may be because I had developed pancreatitis. It definitely flared last week, and was worse then.

I'm so happy I'm NED! But I'm a little ticked off to be dealing with pancreatitis right now. I can't get into my GI doctor - he is booked solid till July. Yesterday they couldn't find anything with another doctor in either of their offices close enough for me to travel to, until June 22. So I went to my primary clinic yesterday. The doctor there told me that my lipase level at 366 wasn't too bad - yes it is a big concern, but some bad cases of pancreatitis the level goes over 1,000. Yikes! She said there is nothing they can do for me. The only treatment is to try to rest the pancreas. If they do it in the hospital they put you on IV with nothing by mouth for a few days. Then they try clear liquids. If that is tolerated without making the enzyme production skyrocket again, you move up to soft liquids, then to soft foods, etc. If not tolerated you go back to nothing by mouth. If this goes on for too long, you need nutrition via TPN. For that you need a central vein. I'm scheduled to get my port out next Thursday. But she cautioned against that. If I end up needing TPN, it would suck to have to get a picc line because I'd just had my port out.

So I'm treating this at home, trying to avoid the hospital. I have to skip the "nothing by mouth" and move to clear liquids. Just water yesterday. They rechecked my enzymes and just called me now. My lipase dropped to 126, and amylase to 91. Still elevated, but a nice drop. I think that is very promising and means staying off food is helping. I've had green tea today, and I'll add some Gatorade or something else later. If all is going well, I can move to soft liquids tomorrow.

I'm double booked for next Thursday. I'll be keeping one appointment or the other. One is to remove my port, and the other is with another GI doctor that could get me in - that was the only appointment (due to cancellation this morning). I'm waiting for a call back with advice from the NP that works with my GI Dr. If this seems to be resolving do I go ahead and get the port out? Or is there worry of recurrance, so I should keep it for a while just in case? I just want to be done with everything and move forward.

sounds like things are resolving nicely
Sounds like you are really getting and following some good advice on this! Your drop in enzymes are awesome! Just remember that clear liquids includes jello and clear broths, so you can keep up your calorie intake as well! As far as the port, I would just put it off a little bit longer; it won't hurt to keep it in and you don't want to be worrying about that while you are working on healing your pancreas! I'm glad to see you are able to get into the GI as well! Good things!
mary

abrub

Kathryn_in_MN said:

thanks
Thanks, but I don't think it could be Lyme disease. I checked into that. I also mentioned something in the Rickettsia group, but that doesn't fit quite right either. Shingles was another possibility, and it did look a lot like that. But in the wrong places. Shingles attacks along a nerve line and on one side of the body. It would normally be on the palms of the hands - it doesn't hit the backsides of the fingers.

For me the rash was extremely painful on my fingers. First red, then blisters, then crusted over, and now most has peeled off. I saw a GP yesterday who said it looked like a chemical burn. But I know it was not. Then there are the two strange spots on my arm. Fingers on both hands, but arm is only one. Those didn't hurt like the fingers. Very odd stuff. I did get headaches, fatigue and really awful joint pain. But the fatigue is not as bad now. (I do still have a lot of fatigue, but I'm not sleeping well due to the pancreatitis, so I think that is the issue.) My joints started getting a lot better this week. I don't look like I'm 110 years old when I try to move now! The doctor said she'd never seen or heard of anything with all my symptoms - after looking at my hands and arm. I still have the one circle by my wrist which is red, but has shrunk, and only had tiny blisters - they didn't pop and crust like the fingers. It is not as bright red as it was. And the big smiley face pattern farther up my arm turned tan. It doesn't seem to be going away at all. Neither one of these hurt or itch or anything. They are just there. (The one by the wrist did hurt at first and till after the blistering, but now nothing.)

I probably had a weird virus. Now the question is, did the virus cause pancreatitis, or have I had it a lot longer? Back when omeprazole quit helping me, even at double doses, it may be because I had developed pancreatitis. It definitely flared last week, and was worse then.

I'm so happy I'm NED! But I'm a little ticked off to be dealing with pancreatitis right now. I can't get into my GI doctor - he is booked solid till July. Yesterday they couldn't find anything with another doctor in either of their offices close enough for me to travel to, until June 22. So I went to my primary clinic yesterday. The doctor there told me that my lipase level at 366 wasn't too bad - yes it is a big concern, but some bad cases of pancreatitis the level goes over 1,000. Yikes! She said there is nothing they can do for me. The only treatment is to try to rest the pancreas. If they do it in the hospital they put you on IV with nothing by mouth for a few days. Then they try clear liquids. If that is tolerated without making the enzyme production skyrocket again, you move up to soft liquids, then to soft foods, etc. If not tolerated you go back to nothing by mouth. If this goes on for too long, you need nutrition via TPN. For that you need a central vein. I'm scheduled to get my port out next Thursday. But she cautioned against that. If I end up needing TPN, it would suck to have to get a picc line because I'd just had my port out.

So I'm treating this at home, trying to avoid the hospital. I have to skip the "nothing by mouth" and move to clear liquids. Just water yesterday. They rechecked my enzymes and just called me now. My lipase dropped to 126, and amylase to 91. Still elevated, but a nice drop. I think that is very promising and means staying off food is helping. I've had green tea today, and I'll add some Gatorade or something else later. If all is going well, I can move to soft liquids tomorrow.

I'm double booked for next Thursday. I'll be keeping one appointment or the other. One is to remove my port, and the other is with another GI doctor that could get me in - that was the only appointment (due to cancellation this morning). I'm waiting for a call back with advice from the NP that works with my GI Dr. If this seems to be resolving do I go ahead and get the port out? Or is there worry of recurrance, so I should keep it for a while just in case? I just want to be done with everything and move forward.

I agree with Mary about keeping the port
Get through the Pancreatitis first, and then get the port out.

I'm going to need a central line next month because I can't tolerate IVs (chemo mucked up my veins such that they feel severe pain) and I no longer have a port. Mine has been out for 2 years, and I'm glad it's gone, but for a question of a few extra weeks, it's well worth keeping. However, I understand wanting to get it out - I couldn't get mine out fast enough, once we decided to stop chemo.

I'm glad that clear liquids seem to be helping. I hope that the success continues, and you don't have to go back to square 1 - NPO.

One day at a time - you'll get through this bump in the road. Get your port removed when you are a bit more secure in status.

Take care.
Alice

ron50

Kathryn_in_MN said:

thanks
Thanks, but I don't think it could be Lyme disease. I checked into that. I also mentioned something in the Rickettsia group, but that doesn't fit quite right either. Shingles was another possibility, and it did look a lot like that. But in the wrong places. Shingles attacks along a nerve line and on one side of the body. It would normally be on the palms of the hands - it doesn't hit the backsides of the fingers.

For me the rash was extremely painful on my fingers. First red, then blisters, then crusted over, and now most has peeled off. I saw a GP yesterday who said it looked like a chemical burn. But I know it was not. Then there are the two strange spots on my arm. Fingers on both hands, but arm is only one. Those didn't hurt like the fingers. Very odd stuff. I did get headaches, fatigue and really awful joint pain. But the fatigue is not as bad now. (I do still have a lot of fatigue, but I'm not sleeping well due to the pancreatitis, so I think that is the issue.) My joints started getting a lot better this week. I don't look like I'm 110 years old when I try to move now! The doctor said she'd never seen or heard of anything with all my symptoms - after looking at my hands and arm. I still have the one circle by my wrist which is red, but has shrunk, and only had tiny blisters - they didn't pop and crust like the fingers. It is not as bright red as it was. And the big smiley face pattern farther up my arm turned tan. It doesn't seem to be going away at all. Neither one of these hurt or itch or anything. They are just there. (The one by the wrist did hurt at first and till after the blistering, but now nothing.)

I probably had a weird virus. Now the question is, did the virus cause pancreatitis, or have I had it a lot longer? Back when omeprazole quit helping me, even at double doses, it may be because I had developed pancreatitis. It definitely flared last week, and was worse then.

I'm so happy I'm NED! But I'm a little ticked off to be dealing with pancreatitis right now. I can't get into my GI doctor - he is booked solid till July. Yesterday they couldn't find anything with another doctor in either of their offices close enough for me to travel to, until June 22. So I went to my primary clinic yesterday. The doctor there told me that my lipase level at 366 wasn't too bad - yes it is a big concern, but some bad cases of pancreatitis the level goes over 1,000. Yikes! She said there is nothing they can do for me. The only treatment is to try to rest the pancreas. If they do it in the hospital they put you on IV with nothing by mouth for a few days. Then they try clear liquids. If that is tolerated without making the enzyme production skyrocket again, you move up to soft liquids, then to soft foods, etc. If not tolerated you go back to nothing by mouth. If this goes on for too long, you need nutrition via TPN. For that you need a central vein. I'm scheduled to get my port out next Thursday. But she cautioned against that. If I end up needing TPN, it would suck to have to get a picc line because I'd just had my port out.

So I'm treating this at home, trying to avoid the hospital. I have to skip the "nothing by mouth" and move to clear liquids. Just water yesterday. They rechecked my enzymes and just called me now. My lipase dropped to 126, and amylase to 91. Still elevated, but a nice drop. I think that is very promising and means staying off food is helping. I've had green tea today, and I'll add some Gatorade or something else later. If all is going well, I can move to soft liquids tomorrow.

I'm double booked for next Thursday. I'll be keeping one appointment or the other. One is to remove my port, and the other is with another GI doctor that could get me in - that was the only appointment (due to cancellation this morning). I'm waiting for a call back with advice from the NP that works with my GI Dr. If this seems to be resolving do I go ahead and get the port out? Or is there worry of recurrance, so I should keep it for a while just in case? I just want to be done with everything and move forward.

pancreatitis
Hi Kath,
My commiserations pancreatitis is no fun. I had an acute dose about three years after I finished chemo. Primary treatment was no food ,oxygen and saline drip. They did an ultrasound of my gall-bladder ,looked ok but my surgeon removed it on suspicion. It was full of gunge and little black stones,one of which had blocked my pancreatic duct. No more pancreatitis but they are not sure what damage was done. Pancreatitis and gall-bladder seem to be common problems for crc survivors. Hope you are better soon,Ron.