Topic: My Treatment Update....Shocked, it's NOT always the Lyme!!!
Tracy9
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Member # 7521
posted
I met with my Lyme doctor yesterday, who is a neurologist. I am going to be undergoing a new treatment protocol.
All indicators are that I have either been cured of or am at least in remission from Babesia, so I am no longer being treated for that.
Tests also show that I have recovered significantly from Lyme Disease. Last year my CD 57 was 32. Now it is 120. This is a huge jump, and a sign that I am not struggling with Lyme disease nearly as much as I was.
I will be continuing to treat the Lyme Disease with Moxatag, a new antibiotic, as well as Plaquenil, which attacks the cystic form of Lyme. Additionally I will most likely continue on IV antibiotics, however those are prescribed by another Lyme doctor whom I will see on Monday. My Lyme neurologist is recommending either IV Tigecycline or IV Vancomycin. This is still a very aggressive Lyme disease treatment.
I am still fighting Bartonella, in fact my titer has gone up significantly. I will be treating that with Rifampin.
The most significant news and change in my treatment is that I have been diagnosed with a rare autoimmune disease called Small Fiber Neuropathy. This was caused by the Lyme and / or the Bartonella. After having had these diseases for so long, my body's immune system began ``turning on itself'' so to speak. I need to continue to treat the Lyme as it is the cause of this disease, as well as this disease too.
According to my neurologist, this disease is one that has been fairly recently discovered, and the definitive test for it has only been available for a couple of years, and is very hard to find. Luckily he does it, recognized the symptoms in me, and performed the test. The test was a punch skin biopsy, and my biopsy came back positive.
The vast majority of the symptoms I am dealing with, as it turns out, fall under this disease. This was shocking to me, as I had no idea that they all went together under anything other than Lyme disease.
This explains completely why, over the last 2-3 years, I have only worsened and not gotten better despite aggressive Lyme Disease treatment. I was not treating both diseases, and the small fiber neuropathy just got worse and worse.
It is a degenerative disease, but IVIG can sometimes halt the progression of the disease and even reverse some of the nerve damage. I will be starting this treatment as soon as possible. In addition to the IVIG, I have been put on Topamax for myoclonic seizures I have been having, also part of this disease.
IVIG is a form of blood transfusion that takes antibodies from about 1,000 donors to make one dose. Each treatment costs about $10,000. (Yes, that is $50,000 per month.) I will be getting the transfusions five consecutive days per month for the next six months to start at the Cancer Center at Harrington Hospital in Southbridge, Massachusetts. The transfusions typically take 5-6 hours, but due to the fact I have a blood clotting disorder they may have to be slowed down and may take longer.
The Cancer Center at Harrington is brand new and just opened, and is a circular room set up with patients all around receiving chemo and the nurses station in the middle.
The five days I will be getting the transfusions I will feel ill, flulike, bad headaches, tired, and nauseous. I will be monitored closely by a nurse and a doctor will be present at all times in case of an adverse reaction. In the event of an adverse reaction, they immediately stop the transfusion and follow a series of steps of other infusions that were not outlined to me.
I am hoping I will not have any adverse reactions to this treatment, that it will work well for me, and that I will regain my health and my life.
Needless to say I am deeply distressed by the complexity of the treatment I am about to undergo. It is going to be by far the hardest treatment I have ever done.
Right now I am feeling very sad and depressed about it but know that I will get past this and back to being hopeful. It is hard to imagine sitting for a whole week each month all day alone in a room feeling sick.....but I am desperate to get better and will do anything I have to.
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
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When I read autoimmune condition, I thought, Oh, no, now her neurologist is going to want to use steroids. Thankfully, it seems your neurologist is up on his Lyme (you did say he's a LLMD?).
Look at this new treatment option as a new opportunity. IVIG works really well for some people, my husband included. Maybe this will be the missing puzzle piece for your recovery.
[ 12-09-2009, 10:52 PM: Message edited by: Parisa ]
Posts: 984 | From San Diego | Registered: Nov 2006
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Tracy9
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Member # 7521
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Yes, he is an excellent LLMD. Thank you so much for telling me it worked for your husband. My biggest fear is that if this doesn't work, I think I'm out of options and I'll never get out of bed. I'm so worried about having a reaction to it or something, but from what I read it looks like that is rare; but the nurse scared me today!!!!
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
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posted
Hey sorry to hear about your small fiber neuropathy - seems really crappy disease. What were your symptoms? - did you lose cold hot/ sensation completely? - I am having paresthesias since july ,they still persists and scare the crap out of me -getting paranoid. I even started IM B complex injection - just to do something (even though I have decent blood levels)
Who is neuro BTW? - I am looking for some neuro who is not hostile to lyme (pm me please - I cant your mailbox is full)
quote: Yes, he is an excellent LLMD. Thank you so much for telling me it worked for your husband. My biggest fear is that if this doesn't work, I think I'm out of options and I'll never get out of bed. I'm so worried about having a reaction to it or something, but from what I read it looks like that is rare; but the nurse scared me today!!!!
There is stem cell option. - two people with lyme have blogs about it and report miraculous recovery . So dont give up - there might be something if not now ,then in next 5 years
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I keep saying I'll post a list of symptoms; I just haven't compiled it yet. I think a LOT of us who aren't getting better with years of Lyme treatment are in the same boat, have this same disease, but haven't been officially diagnosed. I will work on the symptoms list.
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
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Tracy9
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Member # 7521
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Here are websites I found helpful I also put on another post:
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
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quote:treatment are in the same boat, have this same disease, but haven't been officially diagnosed. I will work on the symptoms list.
You mentioned you had biopsy. Any other labs which were abnormal? - one link you reference mentions presence monoclonal antibodies as unreliable indicator
Posts: 856 | From MA | Registered: Jul 2009
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Tracy9
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Member # 7521
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YES the Plaquenil helps; I tried to take a drug holiday and OMG the pain was unbearable; that was a couple weeks ago. I made it four days and thought I was going to die. I stopped Plaquenil, Zith, and Bactrim, and am betting it was the Plaquenil that caused me the most pain.
I've been on it about a year this time, been on it even longer in the past.
I am about to have a ton of labs done, so I will let you know how they turn out. I have some abnormal ones but I don't think they are related to this. My LLD just gave me a slip yesterday for a TON of them.
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
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Tracy, I am so happy for you that you got a diagnosis. Nothing good can happen until a person gets a diagnosis.
So, congratulations.
When you get the IVIG, don't worry if you get nauseous. It is common and they know what to do about it. Just report it. I heard from someone that they stop the IVIG temporarily to treat the nausea, and then start it again more slowly.
Let us know when you will be going into the Cancer Center so we can be praying for you.
Posts: 9931 | From Maryland | Registered: Dec 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
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Tracy, I'm curious who your LLMD is. He/she sounds pretty bright. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Tracy9
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Member # 7521
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TF, thank you so much! You brought tears to my eyes.
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
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lymewreck36
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Member # 4395
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Hi Tracy:
I just read through all of these posts. Can you pm your neurologist to me? Does he live in Orange Connecticut? I saw a llmd neurologist there while I lived in Connecticut.
You are an inspiration to me Tracy. Such a fighter. I just have this feeling that this treatment is going to make you better, finally.
Keep us posted if you can.
Thank you for sharing this with us.
Prayers for you, Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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