I wonder if your doctors should test for interleukin 2?
AnonymousJuly 29, 2007 at 2:16 pm
Dell was tested months back for IL 2 (interleukin 2). The description for IL 2 is “hormone of the immune system that is instrumental in the body’s natural response to microbial infection and in discriminating between foreign and self.”
Normal for Dell’s size for IL 2 is 100-500. His is a little over 2000 now. The dr. has him on Copaxone, a MS drug that we inject every other night. It must be working, because his level has doubled in the past month.
I think there are very little side effects to Copaxone. I thought I would mention this to you and maybe some of you could benefit from this. I don’t know how many drs. are using this, before I posted a question regarding “what is your IL2 level” and I don’t think anyone responsed.
We were seeing Dell’s SED rate go through the roof, normal being 10 (which it is now) and a few months ago (before the shot) it was 80. He was constantly getting a fever. Knock on wood, we have not seen a fever since the shot was started.
AnonymousJuly 29, 2007 at 5:15 pm
Hello…I’ve been on the internet all day looking up information from FAS
to bovine colostrom.
Whew…my head is about to explode…lol. Anyway, I did research on the
interleukin 2 and it is used for cancer of the kidneys. It is in clinical trials
for other uses. It lowers the white blood counts as well as red plasma cells.
It does increase the NK cells (natural killers) of which is the problem with
CIDP patients – they are out of control. They attack good cells as well.
The side effects are enormous…please watch for them. If this works for
Dell, then that is wonderful news, however, for anyone else please research
and ask your doctor.
I need Norb here with his immunology book…Norb,
AnonymousJuly 29, 2007 at 9:29 pm
Yes, Dell does have CIDP. I’m sorry I did not write that in the post. He was about 5-8 months when everything started happening to him. We were dx at 19 months, therefore, his body had so much damage already. If we could have started IVIG at 8months or around a year, I wonder what he would be like now.
I guess you can’t go back, but you can dream.
AnonymousJuly 29, 2007 at 9:48 pm
Thank you for posting that. I’m curious as to why he is on Copaxone when
it is for MS and I had read elsewhere that he had a hard time holding his
head up. What I found out about the medicine is that it isn’t a steroid and
really doesn’t have many reactions. It is a immunmodulator which helps to
boost the immune system like IVIG, but less costly…30 syringes pre-filled for
$247.00 vs. the IVIG cost…however, I’m not so sure I could give myself
I guess my question was wondering if Dell had MS instead of CIDP. They are
close together…does he have a reflex reaction when struck under the
front of the knee? Or does he not react?
I’ll ask my doctor next time about it…
AnonymousJuly 29, 2007 at 9:59 pm
I’m a little confused by your post – are you trying to say that Copaxone has doubled his level of IL2 in the past month?
I got it!!! I just did a search for IL2 + IL17. I wouldn’t have thought of it until I read your post.
Naive T-cells can differentitate into Th1, Th2, or Th17 cells. In the past few years there has been a “discovery” concerning th17 – it has been said in some of the medical literature that this is the cell that produces the cytokine (IL17) which initiates many models of autoimmunity.
My search resulted in this article:
IL-2 Antagonizes Th17 Differentiation
So, taking this one step further, if IL2 reduces the production of IL17, and IL2 comes from Th1 cells, then raising Th1 can be an effective way of “controlling” autoimmunity.
This is important to me, because the literature for the product I give my daughter claims to increase the production of Th1 cells. At the time, I was worried by the risk of the unknown, but I was wondering along this line of thought if it would help. (and it seems to have done just that)
OK – I’ll admit, this is just a theory, but eventually, someone is going to figure this out!
Whatever your doing, Lori, keep it up – and keep us informed of Dell’s progress.
best wishes always,
AnonymousJuly 30, 2007 at 9:32 am
I am excited too. Sometimes his dr. makes me crazy, he goes in a million different directions when we are talking but he’s a “brain”.
Dell was tested for MS and does not have it. His MRI does not show it. He is BEGINNING to get reflexes back. If we can stay on this course of getting better, I think the reflexes will slowly start showing up again.
His PT showed me the reflex in the knee area. We are so excited by this. Can’t believe I was seeing that.
The medication was $2200 but he only takes 1/2 of syringe, every other night. It should last him 4 months. I paid $150 after insurance.
July 30, 2007 at 9:49 am
I cannot express my joy for you! I am so happy that things are going so well. How fortunate you were to find this doctor, I remember last year around this time you were so desperate in your search to make your baby well. It appears as though your patience and persistance has payed off! I can’t wait for the day to come that you are posting to us that Dell is riding his bike and wrestling with his siblings.
Also, I really think your post will open the doors for many on this sight who have continual fevers, thanks for taking the time to share it with the forum so that others can benefit! I hope you don’t mind, I made a new thread directing people with fevers specifically to read your post. I wanted to make sure everyone with fevers has the opportunity to read your info!
Dawn Kevies mom 😮
AnonymousJuly 30, 2007 at 12:17 pm
Okay, I’m really trying to grasp this. Dell is starting to get his reflex back?
One of the delineations between MS and CIDP is that with CIDP, you have
no knee reflexes. With Dell taking this medicine for MS it really is strange.
If this works well for him, that is terrific.
I’ll ask my neurologist about this…it would be great.
July 30, 2007 at 1:54 pm
Yes, you would get your reflexes back as the myelin repairs itself. Not everyone does get them back. Kevin did.
AnonymousJuly 30, 2007 at 3:13 pm
I was told by my neurologist that once the myelin sheath goes, it’s gone.
He said that not all nerves will regenerate due to axonal damage.
Maybe b/c the children are still growing, they have that capacity.
My nerves have not regenerated at all. I never felt any pain as others have.
It seems that this is my destiny to be in.
AnonymousJuly 30, 2007 at 4:28 pm
Maybe someone that really knows what they are talking about (like Compactdisc) will reply. I don’t know about the myelin not growing back. I thought the nerves can repair themselves. I googled cidp/reflexes after I saw Miami Girls post and someone was talking years ago on the forum about getting reflexes back in the right knee.
Have you seen the recent article that was just on MSN (I think) about them discovering 2 genes that MS patients have in common. They talk about IL2alpha in the article.
I think we are on to something with this.
July 30, 2007 at 5:56 pm
If there is NOT axonal damage, nerves can repair themselves. The myelin itself is separate from the nerves, it is around the nerves, kind of like the orange part around an etension cord, the wires under the orange part being the nerves. The myelin is the buffer or the insulator. If enough inflamation occurs through demylienation, the myelin is penetrated and the nerves are then demylienated. If there is no axonal (core of the nerve) damage, the nerves can repair at a mm a day. The reason it seems faster for children is because they are obviously shorter. If you are short, I guess you would have quicker results than an adult that may be taller.
Our doctor (head of pediatric neurology at Rush Univ, top 10 in neuro and cancer treatment) said that the reason some repair faster than others is because they may have had more myelin damage than nerve damage. It all depends on how soon treatment was started, or how mild or severe of a case you had to begin with.
You are right, Compact Disc could give a more detailed explanation. She always has the best info!
Dawn Kevies mom 😮
AnonymousJuly 30, 2007 at 6:42 pm
My sister told me today about the genes that were discovered.
I do know about the sheath being the covering of the nerves, but I guess
what I am saying is that in my case, there obviously has been damage to
the nerves because in my right foot, I can’t pull it up voluntarily.
This is getting depressing…I’d rather have a curable disease…
AnonymousJuly 30, 2007 at 7:56 pm
I have a pdf document that I saved a long time ago – I don’t have any idea where I found it, but I’d be glad to share it with anyone that is interested. It is titled:
Chapter 1 Literature Review
First, a little info about myelin:
Section 1.1 Components and structure of peripheral nerve
Peripheral nerve myelin (PNM) is a greatly extended and modified plasma
membrane wrapped around the nerve axon in a spiral fashion which originates from
and is a part of the SC. Each myelin-generating SC furnishes myelin for only one
segment of any given axon. The periodic interruptions where short portions of the
axon are left uncovered by myelin are the nodes of Ranvier.
My understanding of the descriptions of myelin is that it is a part (extension) of the schwaan cell. It seems like there is a different schwaan cell for each predetermined portion of the nerve. Somewhere I read that if the schwaan cell dies, then that section of nerves will not be remyelinated, otherwise, as long as the schwaan cell is functionally intact, then it can repair the damage caused by cytokines & anti-bodies. Myelin is composed of layers of lipids (76%) & proteins.
Glycolipids found in infectious agents are similar to the the glycolipid composition of myelin.
For those of you who have anti-bodies against MAG (myelin associated glycoprotein):
MAG is a transmembrane glycoprotein and a member of the immunoglobulin (Ig) supergene family. . . . MAG is not essential for myelination. . . . . .in the PNS it is essential for the signaling from SCs to axons that is needed for the normal maintenance of myelinated axons
Here, a little about the Axons:
Axons, the unique extensions from the neuronal cell body, are long cellular processes that make up the nerve . . . .The length of axons varies, ranging from a few millimeters to about a meter in human . . . . three types of peripheral nerve fibers can be distinguished: somatic motor fibers, somatic sensory fibers and autonomic fibers. neurons are formed into bundles
by connective tissue . . . between axons as the endoneurium, as the wrapping around
bundles of fibers – the perineurium, and surrounds the entire nerve as the epineurium. Nerves are
richly supplied by intraneural blood vessels
Axons that have been damaged can be repaired as long as the cell body has not died – it is a long, slow process as I know most of your are familiar with. In axonal damage, the cytokines &/or anti-bodies are sometimes “delivered” by way of intraneural blood vessels – in these types of injuries the myelin can be left intact. Not all damage starts at the myelin. Another point of entry on the nerves involves the exposed areas of the nerves at the Nodes of Ranvier where a gap exists in the myelin.
Well, that’s the end of this brief biology lesson (just kidding). The entire document is 192 pages – quite a lot of detailed info for those brave enough to wade through it. Hope it provided some answers. Let me know if any of you want to take a gander at it.
AnonymousJuly 31, 2007 at 1:59 am
Ok, I don’t know if this has something to do with this il2 stuff or not, I’m curious if anyone else gets really hot and sweaty All over their bodies from doing even the smallest of chores. For instance, eating, the movements to the mouth and up and down, do you feel like you are on fire, and glissen with sweat. I can do alot of things, it always happens, in any type of weather, inside or out, day or night, always. I think it has something to do with the nerves and not firing right or firing into nothing, its really hard to pinpoint and describe. It feels like an instant fever that takes resting time to get over. I have taken my temp during these hot times, it varies from 96 to 100, my heart rate is elevated and my bp is on the low side(for me) Does this sound familiar, or is it just me?:o
CD thank you for finding and posting that info, I find it interesting. 🙂
AnonymousJuly 31, 2007 at 2:15 am
Yes, I sweat by sweeping the kitchen floor, feeding my cats (8), doing litlle
things…but on my face and the back of my neck. I don’t get a fever, but
My blood pressure usually stays at 90/60…anything higher and I usually am
upset…I normally have low pressure.
AnonymousAugust 1, 2007 at 7:21 am
Not only do I sweat doing things but I sweat all night too and wake up smelling like mildew – yech! I do run a fever though so that’s probably what is causing it for me. Yesterday I was sweating like crazy and realized my fever had dropped from 101.7 to100.8 so that explains it. 😉
AnonymousAugust 1, 2007 at 7:45 pm
Mason has his reflexes back. He has CIDP. He and Dell see the same Dr. Masons symptoms are different than Dell. Dr M is thinking about starting Mason on the same medicine Dell in on. Masons blood work doesn’t look good. Dr M is talking about putting a port in next week. Last IVIG he was stuck 6 times before they got a vein.
Lori, Mason really misses Dell. Give him a hug for us.
Love Trish and Mason
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