Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
On Monday morning at 8 am, I report to the Cancer Center at Harrington Hospital in Southbridge, MA for my first IVIG treatment. I will be there all day, and will receive IVIG treatments for five consecutive days.
This will continue each month for at least six months to start, for five days each month. I will likely be getting it at home instead of at the cancer center after this week or even after a couple days this week.
I'm excited and scared at the same time!!!!
This is for small fiber neuropathy, caused by Lyme and Bartonella.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Tracy I am glad that you qualified!
Posts: 3528 | From US | Registered: Apr 2007
| IP: Logged |
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Tracy what happned to Lymefriends -- is it down?
Posts: 3528 | From US | Registered: Apr 2007
| IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
It's back! You have to go in now under www.lymefriends.ning.com. We lost our domain name; it expired and the notices went into Blake's spam folder, so we didn't get them. We will be changing it into www.lymefriends.org, we bought that domain name. Easier to remember, less complicated.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Good luck! Will be thinking of you!
Posts: 4590 | From Midwest | Registered: Jun 2008
| IP: Logged |
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
joalo
Frequent Contributor (1K+ posts)
Member # 12752
posted
I really hope this helps you!! Best wishes!
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
| IP: Logged |
posted
Good luck Tracy. Hopefully, you'll be able to get it at home after the first couple of rounds as it's much more restful to be at home.
My husband started out with a nurse who came to our house and stayed during the whole infusion and we eventually progressed to just having the nurse come for the beginning of the infusion and then from there to not having a nurse come at all.
Posts: 984 | From San Diego | Registered: Nov 2006
| IP: Logged |
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Good Luck. Prayers for the best.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
| IP: Logged |
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
tracy-your pm box is full
lymefriends wont let me in...keeps asking questionas and losing answers-i cnt type so much hands hurt-dont know how to add pic
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
| IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
You can add any pic from your computer, a sample pic, etc....you can email me at my regular email, [email protected].
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Tracy...I am soooo excited for you!!! This sounds really great. My dad gets this drip once a month because he was in a "pre-leukemia" state, found accidentally in a pre surgery blood work up four years ago.
He has been getting this drip once a month for 4 years now. He wouldn't be with us if not for that drip. His immune system was not normal and we didn't even know it.
I am interested in getting this drip myself because of my tick born diseases, especially babeisa, that I can't take meds for becuase of adverse reactions.
If you can tell me any information about how you got this drip, I would be extremely appreciative.
My dad says getting the drip makes him tired and somneone has to drive him home. Bring a good book and a snack. Dress comfortably so you can snooze if you want.
I am again, so happy for you.
Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
| IP: Logged |
Good luck with your IVIG treatments: I'm very interested in your experience as I may be heading in your same direction.
I have what is probably small fiber neuropathy that has been coming and going (but never completely gone) over the past year and a half of treatment for lyme & bartonella. My LLMD just mentioned to me that I 'might' be a candidate for IVIG treatments...but I had previously had the impression that if we could successfully treat the lyme & bartonella which is the underlying cause of the neuropathy, then the neuropathy would disappear. From your earlier post on this subject, it seems that your neurologist considers this to be a "separate" disease with an autoimmune component. Can you shed any light on how your doc determined that this is something that is autoimmune rather than a symptom of the infection?
My neuropathy is getting worse over time, first it was just my feet & legs, then my hands and forearms, now it is numbness/burning in my face and other places. The burning has intensified to the point of pain that is very distracting. However, it is increasingly bad in conjunction with other symptoms that I assume are infection symptoms: aching calf muscles, weakness, out of breath, etc. So, again, I am assuming that some underlying infection is out of control again and that the proper response is to treat the infection (probably bartonella, which I was treated for with 3 months of levaquin but which may not be gone).
Posts: 1 | From Portland, OR | Registered: Sep 2008
| IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
It is a separate disease, but caused by Lyme and/or Bartonella.
He determined it by doing a biopsy, a punch skin biopsy, which is a definitive test for small fiber neuropathy. It is actually a fairly newly discovered disease, with the punch skin biopsy being the only test for diagnosing it.
In an earlier post, I listed several articles about small fiber neuropathy. It does affect the central nervous system. Many of my symptoms I would have never thought were part of a cluster of symptoms of this disease in fact are.
In fact, having learned about this and being diagnosed with it, I think I am probably one of a large number of Lymies who have been on antibiotics for YEARS and just get worse and worse and keep plugging away at it.
The reason we keep getting worse and worse is because we have small fiber neuropathy, but being a relatively newly discovered disease with very few doctors knowing about it and how to diagnose it, it goes undetected.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Maureen,
Here is the thread where I list links to a bunch of articles perhaps you will find helpful:
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
posted
So, is the small fiber neuropathy caused by the lyme and coinfections or something else?
If it is caused by the infections, do you still have the infections or is it damage?
I know several people that have lyme/co infections that have had to be put on IVIG, I almost did myself... seems like there is a connection, and I know it has been proven that lyme and co infections can cause autoimmune problems as well.
Posts: 458 | From Miss | Registered: Mar 2009
| IP: Logged |
Just wondering how things went with your first round of infusions? I've been on ivig for small fiber neuropathy and it seems to help my symptoms (and the skin biopsy numbers have gotten better with treatment). I hope it helps!
-David
-------------------- Same nightmare, different day! Posts: 401 | From East Coast | Registered: Nov 2005
| IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I'm here in the Cancer Center getting my first infusion right now. So far so good; it's been about an hour; no side effects.
How long were you on it, David? I desperately want to be able to get out of bed and be functioning again, that is my main issue; fatigue, balance issue, the dropsies. But mostly fatigue.
Buster, it can be caused by other things, but is most definitely caused by Lyme and Bartonella. I still have the Lyme but it is much better, I did not realize that the worsening of symptoms was the small fiber neuropathy this last couple of years and not the Lyme.
I think there is FAR more common of a connection than people realize, and that like myself, there are many more people who just don't get better who have this and don't know it.
It is a fairly "new" diagnosis, and the punch skin biopsy a fairly new test. Many doctors themselves are unfamiliar with. I feel very fortunate to have gone to a neurologist LLD who recognized the symptoms in me and did the test.
I am desperately hoping this is my answer, and that I will get well. If I could just get over the fatigue, weakness, and imbalance even, I could live again.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| 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!
![[Smile]](smile.gif)
![[group hug]](graemlins/grouphug.gif)
Printer-friendly view of this topic