Tracy9
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posted
I was just diagnosed with this after a punch skin biopsy. From what I've read online it isn't too promising. It certainly isn't life threatening or anything but appears that it can be quite debilitating and that other than IVIG if indicated, there isn't much that can be done but treat the symptoms.
I haven't spoken with my neurologist yet, just got the report yesterday. Actually many of my Lyme symptoms appear to be attributable to this, but certainly not all. I knew I had neuropathy, but did not realize it was this serious.
From what I have read this is the most severe form of neuropathy one can have. I don't have a lot of information yet, as I have not spoken with my doc about a treatment plan, though I have left him a message asking if I am going to need IVIG.
I did however stay up most of the night researching it online and was quite shocked at the dismal information I found.
I'd love to hear from anyone with firsthand information, though sorry to hear if anyone else has this.
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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I was dx'd with Small Fiber Neuropathy recently, and I feel pretty confused as well. I couldn't find a lot of DIRECT info on it while researching it, and my neurologist told me the same thing:
Treat the sx for now; tell her about any "new" sx; and that they are working on better, more precise tests to be able to determine the cause of it.
She said that 60% of patients dx'd with Small Fiber Neuropathy do NOT have the known cause of theirs discovered........making tx more difficult, except treating the sx.
She remained very optimistic that in a year or two, newer tests will be available to help identify specific causes. We're going to do a "modified barium swallow" in the next week or so, due to my increasing episodes of choking on "nothing" ----- just my saliva, or a sip of water, but sometimes food........which has been incredibly scary.
When you see stars, then you see black, and feel like okay, this is it ---- I am going to die right here and now ------ THAT really gets your attention! (Plus, I've been having some other autonomic nervous system glitches that I won't go in to right now.)
I had the punch skin/nerve fiber/whatever you want to call it biopsy done back in August. That was fun wasn't it?! She sent it off to Cleveland Clinic. (This was after she exhausted nerve conduction studies, lots of weird blood tests and an LP.)
She's been in touch with a couple of my other doctors, which has been GOLDEN! For them to compare thoughts, tests, etc. and to be in agreement on this particular dx has really helped to get a little closure on at least ONE ANSWER to some of my health issues!
Please PM me and we can talk further, if you'd like. I'd love to get some more input from someone dealing with this. It seems so hard to find info about it online.......
Carol, I'll check out the sites you graciously offered in your reply. I really appreciate any info I can get my hands on!
Anyone with any other info would be welcomed with open arms!
Thanks & take care, terri3boys
Posts: 268 | From Texas | Registered: Aug 2007
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posted
I have not seen a neurologist yet, but I have severe tingling and burning this year , getting worse and worse, which never happened before. I also lose temperature sensation in my hands and feet. One of the scariest symptoms since it means nerve degeneration
Posts: 856 | From MA | Registered: Jul 2009
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dmc
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Member # 5102
posted
maybe this will help Effective Treatment for Neuropathic (Nerve) Pain
Tracy9
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Member # 7521
posted
I have been extensively researching it now for two days and I believe I need IVIG. I have spoken with another pt of my neurologist who has the same diagnosis, and was told that was the best treatment.
It seems to be a subform of CIDP? I am concerned because I stopped my Lyme meds before I got these results three days ago to have a drug holiday for the first time ever in 5 1/2 years, and because I thought the IV Claforan was making me fatigued and weak, and now I feel like I've been taken in a back alley and beaten with a baseball bat.
I hurt in places I never thought I could hurt. I am in absolute agony. Do the Lyme meds somehow protect us from the symptoms of this?
From the reading I've done, this is most definitely caused by having Lyme a long time. You seem to have two choices, treat the symptoms, or do IVIG (monthly blood transfusions where you get a part of the blood product) and you can gain some recovery.
I am desperate, this could answer why for 5 1/2 years my Lyme has done nothing (especially the last 2 years) but gotten WORSE. Most of my symptoms now fall under the list of this disorder.
I want a chance to get out of bed again. My friend, whose name here is Achey, has gone from wheelchair bound to skiing in 2 1/2 years on IVIG. She has CIDP.
It is a progressive disease with no cure. I think I have spent at least the last two years progressing. I am lucky my LLD happens to be a neurologist who tested me for all this stuff, or I never would have known. From what I've read the punch skin biopsy is a test that is hard to come by, and I just fell into it.
I am going to try to get an appt with him ASAP and not wait till my December appt. I just don't know if I should restart my Lyme meds....the drug holiday sounded like a great idea until every part of my body started to hurt in ways I've never known they could.
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:Originally posted by Tracy9: I have been extensively researching it now for two days and I believe I need IVIG. I have spoken with another pt of my neurologist who has the same diagnosis, and was told that was the best treatment.
Be double careful about IVIG -its a complex of IGG antibodies from random people, the entirety of its effects is not researched. I personally would try other immunomodulation options before this if you havent yet.
Posts: 856 | From MA | Registered: Jul 2009
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Tracy9
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Member # 7521
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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dmc
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posted
I know someone (relative) who was cure of his polymiatis (sp?)with just 3 infusions of IVIG.
Then I read Lymetwister's post here regarding his experience, scary...
Hope you get success with it.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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quote:Originally posted by dmc: I know someone (relative) who was cure of his polymiatis (sp?)with just 3 infusions of IVIG.
Then I read Lymetwister's post here regarding his experience, scary...
Hope you get success with it.
And I hope you have a 'sleep number' bed . They are very comfortable.
Posts: 365 | From Sylvania | Registered: Aug 2008
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Tracy9
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posted
I have a Tempurpedic bed which is very comfortable and sleep in a virtual nest of pillows all around me for support. I rarely leave the bed, so this helps a lot with the pain.
I have a very good friend who has used IVIG for 2 1/2 years and has gone from wheelchair to skiing.
It seems from all the research I've done, either that or plasmapheresis are the only real options for any progress or cure other than living with this degenerative disease with pain control.
I wonder how many others of us who aren't getting better actually have this as a result of their long term Chronic Lyme yet don't know it?
[ 11-22-2009, 09:21 AM: Message edited by: Anna Lee ]
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: from all the research I've done, either that or plasmapheresis are the only real options for any progress or cure other than living with this degenerative disease with pain control.
Well consider IVIG is pooled blood from multiple random people , you dont know what they have, you dont know what they have . You can get autoimmune disease . - "IGG pooled from thousands of people" seems risky to me, though I admit I dont know much about it. So if you feel its safe all power to you.
Anyways there are other things : Standard stuff like LDN , cycloferon,autohemotherapy
And as a last resort thing that stem cell therapy in india has amazing detailed patient reports. There are also clinics which specialize in immune modulation as well .
If you do have access to IVIG covered by insurance then maybe it might, but if you going to pay out of pocket it seems it might not be worth the expenses
Posts: 856 | From MA | Registered: Jul 2009
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posted
There must be specific support groups for this condition-have you looked into those for input?
Posts: 365 | From Sylvania | Registered: Aug 2008
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Small fiber neuropathies can be caused by disorders of metabolism such as diabetes, chronic infections (such as human immunodeficiency virus), genetic abnormalities, toxicity from various drugs, and autoimmune diseases. The cause, however, often remains a mystery. As more research has been developed over the past couple of years, it has become clear that Impaired Glucose Tolerance (IGT) is a frequent cause for small fiber neuropathies.
Be sure you are not toxic from all the medications you are taking.
Posts: 365 | From Sylvania | Registered: Aug 2008
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posted
Could you tell me what your symptoms was. I have had lyme for 12 years 6 it was in remission. I fell last summer and since have went down hill and out of remmission. But seems to me my sypmtoms are different this time. More nerve issues and joint pain. Such as following:
Cannot sit or stand with out sever pain in back muscles have to lay down. Feeling of needles sticking me all over. Sever muscle weakness and pain. Joint pain My back seems the worse i cannot sit up unless i have something like a lounge chair that i can lean my head back on. The more i push the worse it gets. If i have a good day i can sit maybe an hour with support on my whole back.
I find myself absolutely freezing now. Hands and feet are first then all over cold. This happens seems everyday for about two hours or more. Then i start warming up some.
Thanks
Posts: 112 | From Ohio | Registered: Aug 2006
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Please look into CRPS or RSD. Complex regional Pain syndrome. It is also a disease of small fiber neuropathy. The national site is RSDSA.org. It can be caused by an injury, trauma,or a virus or bug. There is very little info on bacterial or viral etiology on this. This is a very old issue with relatively very new research just starting.
The two best docs in the nation are Dr. Schwartzman at MASS General and Dr. Kirkpatrick in Tampa. There are other docs who have trained with Dr. S who you can get into earlier as Dr. S has a two year waiting period. The newer treatments are Ketamine infusions and lidocaine infusions. Opiods do not help with this problem.
Children get this after a simple sprain. Anyone can get it. The more severe cases go to either Germany or Mexico to get a 5 day coma to reboot the nervous system.
The latest case in Mexico is NOT an injury case but a full body LYME CASE!!!! A 17 year old girl who has this RSD has gone full body and was started by a tick bite.
I have talked to the director of the RSD site and said to him that their symptoms are just like ours in severe cases and have they searched for bacteria and or viruses. He said they are just starting and had a PARVO 19 virus study done where 77% of RSD patients had that.
Neurotalk as well as Healthboards have great RSD forums with great info. Some people there have lyme too.
Tracy I hope you don't have this as it is a despicable thing to have. Believe me I know.
You are in the best place in the world for this at Mass General. PM me if you want info on the other docs in that area that were trained by Dr. S
Posts: 871 | From orange county, ca. | Registered: Jan 2006
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Tracy9
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posted
Well my biopsies were positive for it; and it seems many Lyme patients do develop this....it also seems most of my Lyme symptoms fit small fiber neuropathy more than Lyme disease at this point.
I think it explains why I've done nothing but worsen to the point of being bedridden over the last two years despite five years of aggressive treatment.
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
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
My sister had RSD. She is better now. ANS dysregultion is what she worked o along with trigger point therapy and scar work with trigger point and massage.
She thinks I have it and so does the PT I saw a few weeks ago. I think drugs can have something to do with it. Mine, if I have this, started up after a 12 day round of flagyl. It felt like pop rocks all up under my skin, tremors. Pain seems many times what it should be when it is acting up. Again not sure I have this. Felt better with Myers cocktails and glut but then it came back. There is s synergestic effect with emotions, anxiety, which makes sense if ANS, sympathetic is involved. Read on one site to check for glucose intolerance, diabetes as well. Something I have been wondering about.
posted
This is interesting about fat soluable form of B1 and Methyl B12 helping. Since this is an add, I question the contents, but may be helpful to some.
posted
Thanks for the info on Bentfotiamine. That sounds interesting. RSD is small fiber Neuropathy. Dr. Ann Oaklander just finished trials on tissue biopsies of RSD patients and said it is. Her atricle is on the RSDSA.org site. I think she is at MASS General.
Speaking with the people at RSDSA they are just starting to look at a bacterial/viral etiology in this disease. Clinical trials are being done right now for genetic disposition of passing it to a child from the mother.. Sound familiar?
Posts: 871 | From orange county, ca. | Registered: Jan 2006
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Tracy9
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Oh God; I've always wondered how Cody can go outside and walk barefoot in the snow and have it not bother him at all....no, not another thing.....
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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What were the actul results of your skin biopsies (the actual numberical figures)?
I have been dealing with small nerve fiber neuropathy since 2006/2007 when I was diagnosed with it via skin biopsy. I had repeated skin biopsies which showed a continued worsening of the small nerve fibers in both the ankle and thigh.
In January of this year I started IVIG and several months later had a followup skin biopsy done and for the first time ever the numbers increased and my symptoms were starting to feel better. I am going to have another follow up skin biopsy done in the next few months to see if there's been any more changes but I can tell you that it has helped so far.
Regarding the safety of IVIG you should talk to your dr about it if it's the route he/she wants you to go through.
While it is a blood derived product it has a very good safety record. IVIG contains antibodies not antigens and I am not sure how that would cause you to develop in auto-immune disease? I am always learning though and hope to know more as time goes on. I did get comfortable with it after doing my own research and talking with my doctors.
I also did plasmapherisis right before my initial 5 days of IVIG. I kind of look at plasmapheresis as the opposite of IVIG infusions. It takes away plasma (which contains Igm, Igg, etc) rather that putting it into your body so if you have elevated levels of Igm for example that is causing your small fiber neuropathy (which it can from what i understand) then this may help.
Feel free to PM me if you'd like to talk some more!
posted
I have it, and had IM IG for it. The IM shots of IG were extremely difficult and caused a severe worsening in symptoms at first, but after that diminished, things like my gastrointestinal motility, appetite, breathing, etc. got better. I had to stop though because I couldn't handle the worsening of symptoms. The shots brought out the neuropathy in my left arm and it hasn't gone away since. I want to try again sometime though. I think IVIG or IM IG is definitely beneficial.
Posts: 710 | From West Coast | Registered: May 2008
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Tracy9
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David, I have to remember to pull them out and post them... I'd love to talk more as I am going on IVIG and want all the info I can get!!!!
I just posted in "auto immmune disorders" a summary of my LLD appt yesterday. I'm hoping the IVIG will not take long to set up as I am extremely anxious to get better!
How long did it take you to feel better? What were the side effects? Did you feel worse at first, were you incapacitated at all?
Is it true you have to have a nurse present for the entire infusion?
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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