Topic: Finished IVIG 1st dose, and I feel different this morning. 4 more doses to go
lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
The nurse showed up late so I'm not even 12 hours into my first dose. We finished at 10pm last night.
The infusion went smoothly and I actually got a small temp of 99.1 in the beginning and that went away.
I had some chest pain that went away after we paused the infusion and restarted.
I was wiped out afterwards and went right to bed. My Vertigo seemed to be a little worse, but my horrific headache went away during the infusion.
I slept about 8 hours and was awoken by the Vertigo. I wasn't as shaky out of bed as I normally am and my head feels much clearer so far today.
I feel very relaxed as if someone gave my a Valium and at the same time I am aching in my arms and feel pretty weak.
At the same time, my brain fog is much improved.
The sympathetic overdrive I normally wake up with seems to be very dampened and my anxiety is pretty much gone, which is unusual for me in the morning.
It almost feels like I Rifed and many symptoms have abated for now.
I get dose #2 today and the rest come tomorrow, Thursday, and Friday.
Will keep you updated in this thread.
LT
Posts: 1227 | From District of Columbia | Registered: Mar 2009
| IP: Logged |
dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
Thank you for posting. It is exciting to read your details of your observations.
Keeping positive thoughts for you today. Looking forward to your 2nd infusion post.
Posts: 2675 | From ct, usa | Registered: Jan 2004
| IP: Logged |
1. a slight temperature 2. slight chest pain that went away 3. Vertigo increase
Everything else was better after the infusion?
Posts: 458 | From Miss | Registered: Mar 2009
| IP: Logged |
feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Sounds good so far LT. I hope that this gives you measurable improvement. Yay for the loss of that headache!
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
| IP: Logged |
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
How did you get the Rx for this---do you meet criteria for FDA approved use, to get insurance to pay for it? What kind of doctor rx'ed it?
I think this is a great therapy that I have my eye on as well, but no one seems willing to rx it unless you fit certain criteria.
Posts: 3528 | From US | Registered: Apr 2007
| IP: Logged |
lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
All of my symptoms have NOT gone away by far.
I must say things are more tolerable today though than they have been the past few weeks.
The IVIG made me very fatigued, perhaps this is why my anxiety is down. The vertigo may be worse because the headache is gone, not sure as these headaches I have been getting are disabling, and gutrenching to say the least.
Tremors are more in check today as well.
Still achy from the IVIG. And I have actually been breaking some sweats without fever, not sure what that is about.
The best part if I had to say is that I don't feel the Depression and Anxiety that I normally feel, which makes dealing with all of this much easier.
CD57, my Neuro Doc. gave me the Rx and he had to write a letter of medical necessity.
It was all based on this Dysautonomia diagnosis he gave me, which is nothing more than CNS dysfunction that we all have with our Lyme as far as I'm concerned. He also included the POTS diagnosis the so many of us get while treating.
I didn't feel like it, but I just cleaned my entire house from top to bottom as I have people that want to see it, as I have it up for sale.
This, I would not have been able to do prior to the IVIG. I must say, I am worn out now.
LT
Posts: 1227 | From District of Columbia | Registered: Mar 2009
| IP: Logged |
lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
I want to add one more note here:
IVIG is suppose to give you the Antibodies to inactivate the Antigens that are causing infection. It is well documented that those with autoimmune have infection that the body can not ward off due to the lack Antibodies needed to do such.
What I don't get is that we all apparently have this condition. Autoimmunity is very difficult to test for and I have seen patients in my own practice get IVIG for far less suffering than what we go through such as peripheral neuropathy.
With that said, I don't understand why each and every Lyme patient is not getting IVIG. To me, this seems like a no brainer. Besides the crazy cost of IVIG, it would seem like this would be the best way to treat this when abx fail.
This video shows what I'm talking about: http://tinyurl.com/mjxb42 <--Pay attention to the three graphs towards the end of the video.
Just my thoughts.
LT
Posts: 1227 | From District of Columbia | Registered: Mar 2009
| IP: Logged |
What you wrote makes a lot of sense to me but the neurologist who prescribes it for me explained how IVIG might work which is a little different from what you wrote although I am thinking that both make sense and therefore it works in different ways.
Having an autoimmune condition means the body produces too many antibodies against itself. Somehow the infusion of gammaglobulins regulates this either temporarily or hopefully on a permanent basis.
What kind of practice do you have? What you wrote about autoimmunity being difficult to test for can be very true. I know with me it has been more difficult and I continue to have elevated IgM levels even through treatment so far.
CD57- you should check to see with your insurance to see what criteria they use to cover it. There are some approved "uses" but I think every insurance plan is different. In my case a neurologist prescribes it for me.
-David
-------------------- Same nightmare, different day! Posts: 401 | From East Coast | Registered: Nov 2005
| IP: Logged |
losferwrds
Unregistered
posted
So will IVIG completely cure you or will it just boost your immune system so the rife or salt/c or abx will work ,more effectivily? Or will it make your immunesystem just kill off the bugs on its own.
I guess I should watch the video.
Well good luck, it sounds very promising.
IP: Logged |
lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
Davidx,
There are several theories on how IVIG actually works. I don't think there is any question or debate that it definitely boosts the immune system.
Regardless of the science, I just finished dose #2 without incident.
My Vertigo is now less than it was yesterday and even less than it was prior to starting dose #2.
I am fatigued once again and feel like I'm coming down with a flu, which is very common and normal.
My body Tremors are almost gone completely. Despite the feeling of a flu coming on, I definitely, without a doubt, have a new found energy. At least for now.
Just sitting here typing, I can't really complain about anything except to say I'm very tired, yet have energy if that makes sense.
Once again, I feel a sense of being relaxed and I actually feel my personality returning a bit.
I don't want to say too much more right now as I want to see how the rest of the day goes and how I sleep, and lastly how I wake up.
I will definitely keep posting on this with each day that passes.
Just when I thought I was stuck, I am beginning to see some light here. Again, it reminds me of the Herx reaction from Rifing, as I would always get a reprieve of symptoms when I Rifed after the Herx was over.
I have everything on Hold right now, including Salt/C so that everything I report is 100% related to the IVIG.
LT
Posts: 1227 | From District of Columbia | Registered: Mar 2009
| IP: Logged |
posted
My daughter did 11 mos. of IVIG for her Movement disorder and Demeylinating Polyneuropathy. She also would spike a fever (around 100-101) after each dose. She said it made her "achy"-- like a flu-ish feeling & after each dose, she would sleep for hours.
She had infusions for 5 days out of each month, which sounds like what you're doing.
I hope the treatment is successful for you!
Posts: 371 | From CT | Registered: Jun 2008
| IP: Logged |
posted
How is your daughter after doing the treatments, JKMMCO9?
Posts: 458 | From Miss | Registered: Mar 2009
| IP: Logged |
lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
Abstract: Return of muscle strength and function after use of intravenous immunoglobulin for Lyme disease-associated acute demyelinating polyneuropathy
I'm Very achy, sleepy, and flu-ish feeling as JK describes above. Headed to bed after fighting staying awake because of my kids :-)
These symptoms are nothing compared to the agony I was in prior to starting the IVIG. I'm still with plenty of symptoms, everything is just way toned down. Thats the best way to describe what I'm feeling. Will update tomorrow.
LT
Posts: 1227 | From District of Columbia | Registered: Mar 2009
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic