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My Experience With Dr. Kaufman at the Open Medicine Institute

Gingergrrl

Senior Member
Messages
16,171
@jeff_w

He thinks that over the past three years, the EBV would periodically get partially suppressed by my immune system, but that my immune system was progressively weakening, and so the EBV would reactivate at a higher level.

I suspect something similar for me except over the course of 2.5 yrs vs. three.

I think the EBV infection was missed by other doctors for four reasons: First, because my monospot test was always negative. Secondly, because I didn't have a constant, high grade fever. Third, the fact that I was able to attend graduate school full time while working part time (until January, 2014) appeared to make the doctors take me less seriously.

When I actually had acute mono in 2012 (with high fever for three weeks, elevated liver tests off the charts, abcess on tonsil cutting off my breathing, severe swollen lymph nodes and very high EBV IgM) I still had a negative "Monospot" test and was told by my then PCP who was very good, that it was not a very high level test with lots of false readings.

Later when the EBV re-activated, I never had a fever and my temp runs consistently low.

I was also still trying to work full-time while planning my wedding b/c I didn't know anything about needing to rest after mono or that it could re-activate. Unless you see a specialist like Dr. K very early, your average doctor will never pick up on this. Thank God we are both getting solid treatment now. Please keep me posted on how you do with your treatment.

I just got lab slip from Dr. K today and in addition to checking vasopressin & renin like I mentioned, he is re-checking all the EBV tests, VZV, IgG subclasses and some other stuff. I have no idea if I have been on Famvir long enough to see any differences in the EBV numbers?
 

jeff_w

Senior Member
Messages
558
@jeff_w

Thank God we are both getting solid treatment now. Please keep me posted on how you do with your treatment.

I just got lab slip from Dr. K today and in addition to checking vasopressin & renin like I mentioned, he is re-checking all the EBV tests, VZV, IgG subclasses and some other stuff. I have no idea if I have been on Famvir long enough to see any differences in the EBV numbers?

Yes, let's definitely keep each other posted. I'll look forward to hearing about your latest lab results.

Dr. Kaufman is the best doctor I have ever had, no contest. We're in such good hands.

Last night I thought a bit more about your saline issue. Based on my own experience as well as reading other people's experiences, saline can make such a difference. Without it, I can't walk more than a few feet.

Three weeks ago (before Valcyte wiped me out), I was able to walk for 5 minutes, sit down and rest for one minute, and then walk for another 5 full minutes. This represents major progress. (I used to be able to easily run three miles in under 25 minutes, but that's another story). Anyway, when I try to cut back on the saline, I become essentially bedridden. So, I really wonder how much you might improve if you were able to tolerate the IVs!

Assuming your vasopressin and renin labs come back okay, perhaps you could try getting a saline IV in your foot. I have a friend who can't tolerate IVs anywhere other than his feet. Hands and arms would always blow his veins, which might have been due to OI issues pooling his blood to his feet and ankles. You might find that if you are able to raise your blood volume with IV saline, the veins in your hands and arms won't blow so easily.
 
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JAH

Senior Member
Messages
497
Location
Northern California
Yes, let's definitely keep each other posted. I'll look forward to hearing about your latest lab results.

Dr. Kaufman is the best doctor I have ever had, no contest. We're in such good hands.

Last night I thought a bit more about your saline issue. Based on my own experience as well as reading other people's experiences, saline can make such a difference. Without it, I can't walk more than a few feet.

Three weeks ago (before Valcyte wiped me out), I was able to walk for 5 minutes, sit down and rest for one minute, and then walk for another 5 full minutes. This represents major progress. (I used to be able to easily run three miles in under 25 minutes, but that's another story). Anyway, when I try to cut back on the saline, I become essentially bedridden. So, I really wonder how much you might improve if you were able to tolerate the IVs!

Hi Jeff,

I'm somewhat in your boat-- valcyte has been killing me and I'm arranging for saline IVs. I'm certain it will help (I also have POTs). Just wondering if you had a line put in, or you have to get poked every time.

Good luck with your treatment, I myself was at the OMI yesterday, but different doc,

J
 

Gingergrrl

Senior Member
Messages
16,171
Hi @jeff_w

Yes, let's definitely keep each other posted. I'll look forward to hearing about your latest lab results

Absolutely and we will go through this together and you can send me a PM if I can ever be of help. There are many OMI patients here on PR which has been very comforting to me.

Dr. Kaufman is the best doctor I have ever had, no contest. We're in such good hands.

I absolutely agree with you. If and when I get well, it is because of him, no question about it. Besides his medical expertise and attentiveness, he has spent a lot of time doing disability forms for me and I feel like no matter how much I express my gratitude, it does not feel like enough.

Last night I thought a bit more about your saline issue. Based on my own experience as well as reading other people's experiences, saline can make such a difference. Without it, I can't walk more than a few feet.

Thank you and although I wish I had better veins for the saline, I suspect that my body does not need it as badly as you do right now. I was able to do IV saline twice while in the hospital last week (along with IV Magnesium & Potassium) and not sure how big of a difference it actually made for me?

Part of that though was b/c they had it on a super slow drip both times (first time 6 hours and second time 10 hours for one liter of saline!!!) and I was basically lying in bed the entire time. So, without trying to get up and walk (except a few steps to the bathroom) I am not sure how much it might have helped me. Also, with the super slow drip, my body might have adapted to it in a different way than if it had been faster. I really don't know.

Three weeks ago (before Valcyte wiped me out), I was able to walk for 5 minutes, sit down and rest for one minute, and then walk for another 5 full minutes. This represents major progress. (I used to be able to easily run three miles in under 25 minutes, but that's another story). Anyway, when I try to cut back on the saline, I become essentially bedridden. So, I really wonder how much you might improve if you were able to tolerate the IVs!

Famvir does not wipe me out and other than initial headaches and some nerve pain when I first started, Famvir is pretty benign (and I have side effects from literally everything.) I wanted to ask you, when you said you can only walk for five min and then need to sit and rest, what happens at the five min mark? Are you having tachycardia or extreme fatigue, or muscle pain, or shortness of breath? I want to see how similar your experience is to mine before I say anything more.

Assuming your vasopressin and renin labs come back okay, perhaps you could try getting a saline IV in your foot. I have a friend who can't tolerate IVs anywhere other than his feet. Hands and arms would always blow his veins, which might have been due to OI issues pooling his blood to his feet and ankles. You might find that if you are able to raise your blood volume with IV saline, the veins in your hands and arms won't blow so easily.

I didn't get to do the labs yet b/c I didn't have my new insurance card but now I do and plan to do them on Mon morning. I am not sure how the labs exactly relate to the IV's except that Dr. K wanted to see them before deciding about IV's. I feel like Midodrine has helped me more than anything so far and I am taking an extremely low dose. I forgot, have you tried Midodrine? The IV in the foot sounds horrible :eek: although I am glad it is working for your friend!
 

Gingergrrl

Senior Member
Messages
16,171
Hi Jeff, I'm somewhat in your boat-- valcyte has been killing me and I'm arranging for saline IVs. I'm certain it will help (I also have POTs). Just wondering if you had a line put in, or you have to get poked every time.Good luck with your treatment, I myself was at the OMI yesterday, but different doc

@JAH I wanted to wish you the best in your treatment at OMI and assuming you saw Dr. Kogelnick, he is amazing, too. He helped me on the phone last month during a medical emergency and I know several others on PR who see him. Sorry that Valcyte is killing you and I look forward to hearing your experience with the saline IV's.
 

JAH

Senior Member
Messages
497
Location
Northern California
@JAH I wanted to wish you the best in your treatment at OMI and assuming you saw Dr. Kogelnick, he is amazing, too. He helped me on the phone last month during a medical emergency and I know several others on PR who see him. Sorry that Valcyte is killing you and I look forward to hearing your experience with the saline IV's.
Thanks, appreciate (and need) any support I can get!
 

jeff_w

Senior Member
Messages
558
Hi Jeff,

I'm somewhat in your boat-- valcyte has been killing me and I'm arranging for saline IVs. I'm certain it will help (I also have POTs). Just wondering if you had a line put in, or you have to get poked every time.

Good luck with your treatment, I myself was at the OMI yesterday, but different doc,

J

@JAH

Yes, Valcyte is a beast! I keep reminding myself of the potential long term gains. Glad to hear you'll be trying the IVs. They can make a huge difference. I haven't had a PICC line put in... yet. I'm scheduled for one in two weeks. Not looking forward to it, but I've run out of veins, so I have no other options.

Good luck to you! You're in great hands at the OMI!
 

JAH

Senior Member
Messages
497
Location
Northern California
@JAH

Yes, Valcyte is a beast! I keep reminding myself of the potential long term gains. Glad to hear you'll be trying the IVs. They can make a huge difference. I haven't had a PICC line put in... yet. I'm scheduled for one in two weeks. Not looking forward to it, but I've run out of veins, so I have no other options.

Good luck to you! You're in great hands at the OMI!
Thanks Jeff
 

jeff_w

Senior Member
Messages
558
Hi @jeff_w

Absolutely and we will go through this together and you can send me a PM if I can ever be of help. There are many OMI patients here on PR which has been very comforting to me.

Thanks so much, @Gingergrrl

Hi @jeff_w

Part of that though was b/c they had it on a super slow drip both times (first time 6 hours and second time 10 hours for one liter of saline!!!) and I was basically lying in bed the entire time. So, without trying to get up and walk (except a few steps to the bathroom) I am not sure how much it might have helped me. Also, with the super slow drip, my body might have adapted to it in a different way than if it had been faster. I really don't know.

The slow drips don't help with autonomic issues because the body adapts. Slow drips only help with dehydration. I still wonder how you'd respond to a fast drip saline IV.

Hi @jeff_w

I wanted to ask you, when you said you can only walk for five min and then need to sit and rest, what happens at the five min mark? Are you having tachycardia or extreme fatigue, or muscle pain, or shortness of breath? I want to see how similar your experience is to mine before I say anything more.

At the 5 minute mark I feel fatigue, lightheadedness, and weakness wash over me. Very slight tachycardia.
 

Gingergrrl

Senior Member
Messages
16,171
The slow drips don't help with autonomic issues because the body adapts. Slow drips only help with dehydration. I still wonder how you'd respond to a fast drip saline IV.

@jeff_w Thanks and I had wondered if the slow drip IV's were more for dehydration vs. a fast drip. I did my blood tests this morning for Dr. K so until he sees them, I am not sure if he will recommend IV's. I have had a great benefit from Midodrine and not sure if I need IV's at this point, especially with my horrible veins, but I keep it as a possibility for the future. Thanks for keeping me posted.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
@jeff_w Thanks and I had wondered if the slow drip IV's were more for dehydration vs. a fast drip.

Fast drip saline can actually hype you up a bit. I had one before a procedure and the doc wanted to run it in fast but it was very uncomfortable (a bit of chest pain and heavy heart beat) and I asked them to slow it down. Medium speed might be best for most of us.

Sushi
 

Gingergrrl

Senior Member
Messages
16,171
Thanks @Sushi and that is good to know. My new cardio said I would get too much fluid if I did daily IV's (which I never even wanted in my case!) and that 1x/wk would be good for me. He seemed to prefer the slow speed but I don't know how anyone would do a 6-10 hour drip unless they were in the hospital?!! Do you remember how many hours the medium speed lasted for you?
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Thanks @Sushi and that is good to know. My new cardio said I would get too much fluid if I did daily IV's (which I never even wanted in my case!) and that 1x/wk would be good for me. He seemed to prefer the slow speed but I don't know how anyone would do a 6-10 hour drip unless they were in the hospital?!! Do you remember how many hours the medium speed lasted for you?

This is an old memory, so probably not very accurate--2 1/2 -- 3 hours?

Sushi
 

NK17

Senior Member
Messages
592
@Gingergrrl , @jeff_w , @JAH and @Sushi I'm seriously thinking about IV saline too.
I'm a patient of Dr. Kogelnik, I've been on Valcyte for several months now with no improvement yet.

I recently saw my PCP and told her about our common problem with low blood volume and she told me that since she doesn't know much about ME she would treat me empirically only after she has communicated with Dr. Kogelnik.

@jeff_w I'm curious to know where do you get the saline IV? Do you have to go to an infusion center? The best solution for me, granted that it works, would be to get them at home.
 

Gingergrrl

Senior Member
Messages
16,171
@NK17 Although I don't actually have one, both Dr. K and my new cardio said they could give me a prescription for IV saline which I would take to a local infusion center. If I end up getting one, I will research some infusion centers and let you know what I learn. Not sure if someone can do it at home?
 

jeff_w

Senior Member
Messages
558
@jeff_w I'm curious to know where do you get the saline IV? Do you have to go to an infusion center? The best solution for me, granted that it works, would be to get them at home.

Hi @NK17

I was sick enough to qualify for home health care and got infusions at home. Every 4 or 5 days, a home health nurse would come over, insert the IV, and then start the saline. After the infusion, the peripheral IV would stay in my arm for 4 or 5 days.

I have a home health delivery service bring saline to my home once a week. I do my own infusions at home with my own IV setup. The only time I need a nurse are on the days when the peripheral IV needs changing.

All of this is covered by my insurance. My primary care doctor, not Dr. Kaufman, ordered all of it.
 

Gingergrrl

Senior Member
Messages
16,171
@jeff_w and @NK17 I wanted to let you both know that my cardiologist ordered IV saline for me for 1x/wk. His office wrote the prescription as one liter over three hours (I guess that is a medium drip as Sushi mentioned) and I can try it 1x/wk for one month to see how it goes.

He wrote the diagnosis as "Dysautonomia." Now I have to find a local infusion center or decide if I want to go to his hospital which is a bit far from me and would require my husband to drive me and then he'd have to sit around for three hours!!!

In my case, I don't want it at home b/c I have too much trouble with my veins and if the vein burst mid-IV, I want the nurse there to fix it!
 

heapsreal

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10,089
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australia (brisbane)
@jeff_w and @NK17 I wanted to let you both know that my cardiologist ordered IV saline for me for 1x/wk. His office wrote the prescription as one liter over three hours (I guess that is a medium drip as Sushi mentioned) and I can try it 1x/wk for one month to see how it goes.

He wrote the diagnosis as "Dysautonomia." Now I have to find a local infusion center or decide if I want to go to his hospital which is a bit far from me and would require my husband to drive me and then he'd have to sit around for three hours!!!

In my case, I don't want it at home b/c I have too much trouble with my veins and if the vein burst mid-IV, I want the nurse there to fix it!

Becareful, you dont want all the travel to undo the good work of the saline.

I wouldnt worry about veins bursting, abit of direct pressure, maybe an ice pack. you will expend less energy getting it done at home. :)