PML Positive PML Negative PML positive - How could this possibly be true?

[shylarae]

I'm kind of a old-newbie. In Dec 2014 JCV antibodies in my blood had rise from approximately 65 to 133. I decided to have a LP as soon as I found out. The LP was shipped to Mayo to be done. The results were returned as POSITVE for PML in January 2015, but Mayo does not give CNS counts - just positive or negative. I was then immediately admitted to the hospital. I had MRI's, a port inserted in my neck area (for plasmapheresis), 1 treatment of plasmapheresis, and another LP. This time the test went to a lab in California and returned with at count of 133 JCV antibodies in my CNS - another POSITVE result. Within five days of my release from the hospital, which happened to be the day I had the port removed from my neck. I developed a fever of 103.7, extreme shaking, teeth chattering and even with the fever, I was always cold no matter how many blankets were piled on top of me. The diagnosis after numerous tests was that I had developed sepsis. which they believe resulted from the removal of the port from my neck. I was released on Jan 31 2015.

I returned to my neurologist, who wanted me to now have additional MRIs and another LP done. The MRI looked fairly good, meaning I had only one new small lesion. My neuro consulted with a neuro with more experience in Tysabri associated PML. I then went to a consultation with him. He agreed the MRIs looked good. The LP test had come back with a result of less than 50 JCV antibodies in my CNS which is listed as a NEGATIVE result for PML. The conclusions the neurologists drew was that my immune system had revved up and destroyed the JCV in my CNS. But they weren't sure, so for the next 6 weeks I had an MRI of my brain done once a week. Apparently when you have PML it will show up extremely quickly on a MRI. So for comparison purposes, I had the weekly MRIs. Conclusion from these MRIs was that my brain had not undergone an significant changes. YEAH!!! I am NEGATIVE for PML! What am amazing ending! Or so I thought ...

But then in October my neurologist wanted to send one more test of my blood to the lab in California just to close out this episode. This month I received the results by EMAIL - my JCV antibody count in my blood was now up to 167. I had been told previously by the neurologist that this virus antibody could no longer replicate because of the destruction done by the sepsis. When the count of 167 came back I called my neurologist with questions. She called me back so we could discuss a plan. I have none of the symptoms of PML, but we decided I should go for another LP, which will be done next week. In a week to ten days I will receive the results from that LP. But for now I just sit here worrying and waiting. I have asked the question of how it could go from POSITIVE to NEGATIVE and back to POSITIVE with no explanation from the doctor.

And so I am hoping and praying someone out there can help me try to figure this out. I know the vast majority of us aren't neurologists or physicians, but I know there are a lot of you out there with tons of knowledge. I am hoping someone out can give me some sort of an explanation as to how this could possible happen. Any info would be greatly appreciated. I think my neuro owes me some kind of explanation, but we all know there are times that just doesn't happen. I would even take 'I don't know' for an answer. I would at least understand that.

Thanks to all who take the time to read this long - long - long post. I don't know how I could explain with less words. Thanks & God Bless all of You.

[Myoak]

Hello Shylarae,

First point… how do you know that you are positive for PML if you don’t know the results of the most recent LP, yet? Especially since you have no symptoms? Don’t mistake having JCV antibodies in the blood for having JC virus in the brain. Positive for JCV antibodies is not positive for PML.

The numbers you mentioned (65 and 133) relative to JCV antibodies will be quite confusing to everyone unless JCV antibody numbers are expressed in titers that everyone is familiar with. Do you know your titer numbers before and after they spiked? If not, you should ask, so we are all talking about the same thing.

As best I can gather, you experienced a spike in JCV antibodies in the blood and decided to get an LP. Apparently, the Mayo Clinic found JC virus in the CSF and a positive diagnosis of PML ensued from that finding.

You underwent plasmapheresis to restore immune function and following that another LP was done and sent to a California lab since Mayo didn’t give a viral count; Mayo could only tell whether you were positive or negative for PML.

The California lab gave a value and said you were still positive. Personally, I would not think it unusual if a restored immune function from plasmapheresis didn’t have time to immediately clear the virus in what appears to have been a couple days. But I have to wonder also, if what they actually tested was JCV antibody in blood rather than JC viral count in CSF. But no need to get hung up on that.

Later, we see the virus did clear as demonstrated by a follow-up LP. You mentioned, “The conclusions the neurologists drew was that my immune system had revved up and destroyed the JCV in my CNS”. That is the goal of plasmapheresis.
The follow-up MRIs were good, no sign of PML. YEAH!

But then blood was sent to California for another JCV titer test although you didn’t say what the titer was. 167 is not a titer number. Did you mean 1.67? If not, do you know the titer number? Any titer number over .4 is considered positive. BUT IT IS ONLY POSITIVE FOR JCV ANTIBODIES, NOT PML!

PML is not determined by a blood test. No matter how much JCV is in your body, if it isn’t in your brain you do not and cannot have PML. Originally, the Mayo Clinic tested the fluid taken by LP and found JC virus. Later LP showed you cleared the virus.

You don’t have the results from your latest LP so you can’t possibly know if it will be positive or negative for JC virus in CSF.

You underwent plasmapheresis in January to restore immune function and clear the JC virus from the CSF. That was described by your neurologists. It seems doubtful they would put you on something which would again suppress your immune system. If the immune system is working it will clear the JC virus in virtually everyone.

Over 70% of people over 50 years old test positive for JCV antibodies. JC virus and PML is not a problem in any of those hundreds of millions except when the immune system is suppressed.

The fact that your immune system cleared the virus once is great. Remember, it isn’t going to clear JCV antibodies from the blood, those will always be there. Testing positive for antibodies is not testing positive for PML!

To review... JCV was found in your CSF, you restored immune function, you cleared the virus from CSF once, you were alarmed by JCV antibodies in the blood, you had another LP to test for JCV in the CSF but you have no MRI or clinical evidence of JCV infection in the brain. At this point you are not positive for PML by any measure; MRI, clinical presentation, or JCV in CSF. Considering all those factors I seriously doubt that you have PML.

Please let us know how the LP turns out, won’t you? Thank you for posting, we all learn so much together.

You have all my prayers and deepest considerations for your best health. God bless you, dear friend. My thoughts will always be with you and for you.

[shylarae]

Thank You Myoak

I appreciate your response to my plea for some help in understanding all these numbers and where I currently stand. My remaining question is why would the JCV count in my blood rise to 167 after being counted as less than 50. It was my understanding that a count this high would be a warning of the existence of PML in my brain. Could this increase be due to my body not really ridding itself of the PML? I know I still don't understand the correlation between these counts and the titre. I pulled copies of my medical records, but they don't consistently list what the counts are referring to. My PML is on Friday. As soon as I know something, I will let you know. You are a kind person. I know we are all in this together to figure it out. Thanks again. My thoughts and prayers will be with you and all our MSers out there.
Shyla

[Myoak]

Hi Shyla,

Thank you for your kind thoughts and words!

You will have an LP on Friday which will provide necessary information for your doctor. Guessing at the outcome is all we can do at this point and guessing has no value. I know you are worried but I and others are praying for you, that peace will be your companion with comfort in the knowledge that God loves you far more than anything I could express or even wish for in your regard.

There are times in life when we must rest and give all our concern to the Lord. It is just too heavy, too burdensome for us to carry the worry and fear which would drag us down and exhaust us.

Your doctor will be able to explain what is going on, I cannot. What I can tell you is that JCV in the blood, no matter what amount is measured can cause PML; never, never, never. The JC virus which causes PML must be a strain which is neurotropic, it must cross the blood brain barrier, and it must not be cleared by your brain; then and only then can it cause PML.

You have cleared the virus once. Plus, at this point, without the results of the LP no one can know if JCV is even present in your CSF.

Lastly, if you do have JCV in the CSF, protocols are being refined to achieve the best outcomes possible. At a MS conference last month a study was presented titled, “Fifteen non-fatal outcomes in natalizumab-associated PML/IRIS: the effects of early diagnosis and evolving novel therapeutic approaches”.

Treated with a PML management protocol under development at Rush University there were no fatalities among the 15 PML patients in the study. Eight of the 15 recovered in 5 to 9 weeks and 6 went back to work, another went back to school and another went back to volunteering as pre-PML.

Your doctor will be up to date on treatment protocol, if treatment even becomes necessary. But again, at this point, no one can predict what the LP will show. A blood test does not test what is in the CSF. You do understand that, right? Please don’t borrow worries from tomorrow today. How many times have our worst fears proven not true? Often!

Two things I believe in are prayer and good doctors. I believe in God who can give you an overwhelming sense of peace, a peace which settles down into your very bones, a peace which calms your worries and fears with such assurance that you know it comes from outside yourself to the inside of your being. This is the love God has for you, Shyla, it is yours and it will abide with you today, tomorrow, and always. You Shyla, are the very object of his affection and you have become someone of our affections, also.

Think of the ocean… as wave after wave washes over the shore... may so relentless a love wash over you again and again; and give you peace. This is a supernatural peace and it is yours.

Surrender your worries to love and peace will replace fear, dearest Shyla. This love and this peace will strengthen your mind and inner being with courage for any battle.

You are going to win this one, Shyla.

[shylarae]

God's Pot

Dear Myoak,
I was truly blessed to receive your response to my last post. Just reading it made me feel better immediately. I could feel a calm coming over me almost instantaneously. And then I realized I had to amend my thinking. The words I used to say to my Mom when she was worried or upset was 'Put it God's Pot'. I foolishly had forgotten these words in my own thoughts. I think we sometimes believe we have some control over this disease by trying to keep ourselves informed and up to date on the last developments and treatments.

Your words made me remember that I don't have control of my MS, but I do have a choice in how I handle good news and bad news about my condition. And your words helped me remember God is with me and will help me through this situation and any others to come along. Thank you so much for reminding me to put it in 'God's Pot". He will handle it without any help from me. I just have to remember to look to him and the people he has provided to help me along the way.

I truly believe you and others on this site, are his blessed assistants. I will continue to pray for all of us and leave it in God's hands. You are an amazing and inspirational person. And I thank God for putting you in my world. I will let you know when the results come back, but for now I am at peace with whatever will be and I thank you and my family for helping me feel this way. God bless you and all who travel along with us on this bumpy journey.
Shyla


** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[Myoak]

Hello Shyla,

I hope all went well with your LP last Friday. Is there any news about that which you feel comfortable sharing? Thank you for posting about your experiences which help us all to learn.

Best of health to you!

[Myoak]

Hi Shyla,

Our messages passed each other before I posted so I didn't see your thoughtful and kind expressions which mean so much to me. How gracious of you, thank you, Shyla. I am grateful that the Holy Spirit is with you and in you, giving you peace.

When a flower is crushed the fragrance released is so much more powerful. Your life has that fragrance, Shyla.

I believe the peace you have will afford your body an improved opportunity for healing. I don't know how or why but it does happen. The love of God is yours, always.

[LL60]

Hi Shyla,

Our messages passed each other before I posted so I didn't see your thoughtful and kind expressions which mean so much to me. How gracious of you, thank you, Shyla. I am grateful that the Holy Spirit is with you and in you, giving you peace.

When a flower is crushed the fragrance released is so much more powerful. Your life has that fragrance, Shyla.

I believe the peace you have will afford your body an improved opportunity for healing. I don't know how or why but it does happen. The love of God is yours, always.

Love your quote.

[Kimba22]

And then I realized I had to amend my thinking. The words I used to say to my Mom when she was worried or upset was 'Put it God's Pot'. I foolishly had forgotten these words in my own thoughts. I think we sometimes believe we have some control over this disease by trying to keep ourselves informed and up to date on the last developments and treatments.

Your words made me remember that I don't have control of my MS, but I do have a choice in how I handle good news and bad news about my condition. And your words helped me remember God is with me and will help me through this situation and any others to come along. Thank you so much for reminding me to put it in 'God's Pot". He will handle it without any help from me. I just have to remember to look to him and the people he has provided to help me along the way.

I truly believe you and others on this site, are his blessed assistants. I will continue to pray for all of us and leave it in God's hands. You are an amazing and inspirational person. And I thank God for putting you in my world. I will let you know when the results come back, but for now I am at peace with whatever will be and I thank you and my family for helping me feel this way. God bless you and all who travel along with us on this bumpy journey.
Shyla

Hi shylarae,

I'm so sorry you are being faced with this worry yet again. Times like these all we can do is let go and trust in Him. "Trust in the Lord with all your heart and lean not on your own understanding". Prov. 3:5. Trust He will handle this for you, dear Shyla.

Thank you for sharing with us, and allowing us to learn from you. I hope you recieve good news from your LP. Please keep us posted. Keeping you in my prayers.

[KatieAgain]

How are you doing now? I hope this finds you well.

[Myoak]

It would be great to hear from you, Shyla. If you get the chance please let us know how you are doing.

KatieAgain, How are you, dear lady? I know you have incredible struggles and want you to know that I think of you often and never fail to pray for you. Often with gentle thoughts for your comfort, health, and conditions to improve. I'm praying for your inner strength to never fail and that the God of all comfort shall comfort you as only he can.

I don't understand why suffering is so prevalent with us. I wish it weren't. But it is very present so we have no choice, we have to face it and deal with it, terrible as it is.

I do believe the fact that someone truly cares about our afflictions and expresses that care, no matter how clumsy or disjointed the words which are expressed, there is a benefit in knowing someone feels with you and desires for you relief from pain and torment, a stepping out of that condition and into a place of peace and more peace, greater than the pain and disappointment.

There will come a time to die for all of us but right now is the time to live. We have life and we shall live it in all the vigor and delight we can muster. We owe it to ourselves and our loved ones.

You have always delighted me, Katie. You are a wonderful, fascinating person important to so many of us. Be encouraged and uplifted because you are loved.

[KatieAgain]

Myoak-You are just wonderful! (((HUGS))).

Your prayers have certainly helped so thank you as well as all the wonderful people here who have prayed as well...yes, I feel the love.

Short story...I am doing much better and the docs are pleased with my progress...lets hope it stays that way. I think we are all amazed that through it all...I did not flare.

Shylarae...I hope you are still out there to let us know your status too. Because I have been thinking about you.

[Myoak]

Katie, what a wonderful report! It is so good to know you are doing better; you are a joy.

Shyla, we are thinking of you; check in when you can, ok?

And, Katie, you always have my heart and thoughts; you made my day!

[wallflower]

my dh has been on tysabri for 8 years and just got a positive jcv test. his neuro told him that titers of 1.0 or higher are positive, and his titers were 1.05. so barely in the positive... but i see people posting that .4 or .5 is positive? why would there be this difference? my dh neuro requiring twice as high of titer compared to you guys. any thoughts much appreciated.

[Kimba22]

Hi wallflower,

I created a new thread for you for greater visibility. http://www.msworld.org/forum/showthr...V-titer-levels

Shylarae:

How are you? We hope and pray you are ok. Please update us when you can.