PEX and illness

[searching_for_help]

We feel totally lost here. dd finished up plasma exchange last Monday, and she has been much worse mentally. She's also been completely exhausted, depressed, suicidal and is having terrible chills. Some of it we attributed to the Prozac they prescribed. But the exhaustion and chills are not going away, and I am beginning to suspect mono.

 

She had mono a year and a half ago. We thought it was strep, as she tested positive several times while ON different abx. BUT, I also suspected mono due to the symptoms of complete and utter exhaustion for 3 weeks. I just checked the mayo site, and couldn't believe it, but what I read under symptoms of mono said, "Sore throat, perhaps a strep throat that doesn't get better with antibiotic use".

 

AND ALL THOSE DOCS said she COULDN'T test positive for strep while on those abx, even though they were holding the positive results in their hands! Ugh! Infectious disease docs say that can't happen.

 

Soooo, now that I've found out that you actually CAN get mono twice, I'm wondering if somehow the plasma pheresis could cause a reoccurrence. Can't get to doc until Monday to check EBV titers.

 

Do any of you have a clue what could be going on? It's almost impossible to keep her out of a behaviorial unit, her condition is so bad, but I know they can't help her either. We are at a loss and exhausted.

 

We get totally differing stories from docs and nurses as to how plasma pheresis even works. Her doc said she should have been better DURING the pex. The nurses say it's a gradual thing. I haven't heard back from Dr. L, but got the impression it would be a gradual thing, like IVIG. If she has mono, was the PEX all for nothing? She also supposedly has Lyme. We can't take much more and no one seems to understand what is happening. Please help.

[rowingmom]

If PEX removed mono antibodies and mono is still present in her system; now with nothing to challenge it, I imagine a reoccurrence would be possible. Did she receive donor plasma, albumin or saline?

[searching_for_help]

I believe it was 5% human albumin.

[rowingmom]

If it didn't contain mono antibodies and the mono virus was remaining in her system, she will have to produce more of her own before she can overcome the infection.

 

From Wikipedia:

 

Serum albumin, often referred to simply as blood albumin, is a globular protein that in humans is encoded by the ALB gene.^[1][2][3]

Serum albumin is produced by the liver, occurs dissolved in blood plasma and is the most abundant blood protein in mammals. Albumin is essential for maintaining the oncotic pressure needed for proper distribution of body fluids between blood vessels and body tissues; without albumin, the high pressure in the blood vessels would force more fluids out into the tissues. It also acts as a plasma carrier by non-specifically binding several hydrophobic steroid hormones and as a transport protein for hemin and fatty acids. Too much or too little circulating serum albumin may be harmful.

 

• Function[edit]

Albumin functions primarily as a carrier protein for steroids, fatty acids, and thyroid hormones in the blood and plays a major role in stabilizing extracellular fluid volume by contributing to oncotic pressure (known also as colloid osmotic pressure) of plasma.

 

 

 

Not sure if albumin contains any immunoglobulins.

Edited December 6, 2014 by rowingmom

[PowPow]

my daughters' had plasmapheresis a total of three times between the two of them. The one who had been sick the longest, and was very severely affected took a solid month to see improvement. Prozac also made her much much worse. She takes clomipramine.

Pex was only a temporary fix, but I will take any remission they could get from this horrible illness. Besides the temporary help, this also give us the evidence that we need, and other doctors have needed, to finally find and treat the underlying condition. It was evidence that this truly was autoimmune in nature.

[searching_for_help]

powpow,

 

Do you mind sharing what kinds of improvement you saw after a month?

 

I'm afraid we won't see any improvement since she got so sick right after PEX.

[PowPow]

My daughter (who had been room-bound due to OCD) was able to eat a short lunch with us. She showered occasionally. She spoke to us some, with out screaming.

It was continual slow improvement for about two more months. Pex was repeated three months later. Again, a month later, we saw minor but definite improvements.

I will be honest. I have a very different approach to this illness than other people on this forum. In fact I think we, or rather our children, suffer from different illnesses with the same symptoms. I myself, would not be terribly devastated if she was sick after receiving plasmapheresis. I had no doubts my child's illness is caused by autoimmunity. Perhaps it was triggered by her Lyme disease, or another infectious trigger that I cannot pinpoint. But the fact is, treatments for autoimmune disorders have healed my child. At this point I really don't care what triggered it. And I believe there's a lot more science behind autoimmunity treatments then searching for "hidden" infections. Obviously, your daughters infection is not hidden, if she is symptomatic. But I would not waste too much stress or upset over the fact that she is still sick.

Do you have something that pointed to autoimmunoty as a cause? Any labs or positive response to ivig or steroids?

Is it possible her problem (current physical symptoms) caused by something for typical- anemia, for example?

Or even more likely, in my opinion, is the prozac. that medicine is a real mess for some people. do you have a good psychiatrist that would be willing to consider that the Prozac might actually be making her worse?

[HopeinHIM]

We feel totally lost here. dd finished up plasma exchange last Monday, and she has been much worse mentally. She's also been completely exhausted, depressed, suicidal and is having terrible chills. Some of it we attributed to the Prozac they prescribed. But the exhaustion and chills are not going away, and I am beginning to suspect mono.

 

She had mono a year and a half ago. We thought it was strep, as she tested positive several times while ON different abx. BUT, I also suspected mono due to the symptoms of complete and utter exhaustion for 3 weeks. I just checked the mayo site, and couldn't believe it, but what I read under symptoms of mono said, "Sore throat, perhaps a strep throat that doesn't get better with antibiotic use".

 

AND ALL THOSE DOCS said she COULDN'T test positive for strep while on those abx, even though they were holding the positive results in their hands! Ugh! Infectious disease docs say that can't happen.

 

Soooo, now that I've found out that you actually CAN get mono twice, I'm wondering if somehow the plasma pheresis could cause a reoccurrence. Can't get to doc until Monday to check EBV titers.

 

Do any of you have a clue what could be going on? It's almost impossible to keep her out of a behaviorial unit, her condition is so bad, but I know they can't help her either. We are at a loss and exhausted.

 

We get totally differing stories from docs and nurses as to how plasma pheresis even works. Her doc said she should have been better DURING the pex. The nurses say it's a gradual thing. I haven't heard back from Dr. L, but got the impression it would be a gradual thing, like IVIG. If she has mono, was the PEX all for nothing? She also supposedly has Lyme. We can't take much more and no one seems to understand what is happening. Please help.

Oh so sorry. I feel your exact frustration. I just pray all the time to get thru the day for our Ds10 as well. A few things to check into . You say she is tired and weak so check to see if she is G6PD deficient. . If she is on frequent Advil and sulfa drugs, they can be making her sick and weakening her immune system. Also, some of the high pro biotics we were using caused D-lactaid acidosis in our boy as well. Research that a bit. Now only giving him Lactaid free probiotics. DS has low Igg and IgM. Dr T has mentioned IvIg but we are trying other things first. After 4 months on three different anti B he started to grow so weak. It's a tuff place to be because many traditional Docs don't support treatment of Pans . Oh maybe a 10 day anti b try, but overall, l they say they don't stand behind my husband and I with long term anti B treatment. They just offer mind altering meds. Our child has been in crises state (no school) no going out ) for several months. ALSO we r treating for lymes. (his ped doesn't think we should be long term on those meds either) Like you said so many doctors and so much confusion. This illness is difficult!! Every child is different so don't be afraid to follow your instincts and seek third or even forth opinions. Our son on three different anti B came back with active Strep!!!!! HOW? I guess these children just have weak systems. For now we are removing all anti B and doing anti Viral bc his viral load is high. Focusing more on boosting his immune system and regaining strength. The Prozac made him suicidal as we titrated. PLEASE be careful increasing the SSRI. I am not sure how to calm their minds when the PANS meds are not exactly curing them at the moment. I am looking for something as we speak but Prozac and Luvox were not the answer for us. Try and stay positive and you are NOT alone!!