my Rhummy sent me for an EMG. He had finally convinced me that all of my symptoms were not Lyme related but rather related to other Skeletal issues. After getting the results back I was shocked to find out that I have peripheral Neuropothy.
Is this common for people diagnosed with Lyme? If so what are some of the things to expect? I thought my pain was all joint pain onky to find out it is not at all.
Posts: 34 | From Hazlet New Jersey | Registered: Apr 2009
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my daughter's has finally disappeared, she was in extreme pain that kept her from walking
she is back to taking gym and playing a sport
she can run again, when just 2 years ago walking was very difficult
are you being txd for lyme? do you have a llmd?
bartonella can cause pain along nerve pathways, or at least in us it did
painful soles are common with bart too
have you been tested for the co-infections?
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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I tested positive for Lyme, Was treated with 1 month of antibitics...I am being treated for other things. Along the way I had an EMG which showed Peripheral Neuropothy. I am now seeing a Neurologist. He is sending me for an MRI and Additonal blood tests... I usually cannot feelmy foot at all, it very painful.
Posts: 34 | From Hazlet New Jersey | Registered: Apr 2009
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
Unfortunately, 1 month is not considered to be long enough treatment for Lyme disease. Considering that is too short a treatment protocol, I would imagine you were not evaluated or treated by a LLMD, so I am guessing you also were not given a strong enough dose of antibiotics.
Peripheral neuropathy is definitely a Lyme symptom, and is a sign that the Lyme has been able to get into your peripheral nervous system, and therefore has likely had time to reach your CNS, which by that time it becomes very difficult to treat.
I hope that you can find an Lyme specializing physician so that you can get into prompt antibiotic treatment, which will likely help or alleviate your peripheral neuropathy symptoms.
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Yes, neuropathy is common. I had it very badly when I started treatment. After the first year of treatment most of the neuropathy in my hands and feet were gone.
I agree with nenet. Unfortunately I've read many stories like yours. Standard IDSA (Infectious Disease Society of America) treatment is not long enough or strong enough to deal with lyme disease. Most doctors who are not members of ILADS (International Lyme and Associated Diseases Society) use the IDSA guidelines.
I'm not sure if you know this or not but there are battles going on regarding the treatment of lyme disease. Many who end up at lymenet with chronic lyme disease are the result of the IDSA guidelines.
The Attorney General of Conneticut found that the IDSA guideline authors had conflicts of interest and thus the IDSA has convened a new panel to review the guidelines and hopefully they will make adequate changes.
One can also get what we call co-infections from the tick that passes lyme. Some of these infections require an entirely different treatment than lyme disease. It is not unusual to have a co-infection and if you do, it is much more difficult to get rid of lyme.
Your best course of action in my non professional opinion is to seek out an ILADS trained LLMD. Most have extensive training in TBI's (Tick Borne Illnesses) and can give you proper testing and clinical evaluation for lyme disease and co-infections. Testing for most of these pathogens is poor at best.
ILADS is a group of physicians who specialize in treating chronic lyme disease. You will often hear them referred to as LLMD's (Lyme Literate Medical Doctors) http://www.ilads.org/
You can go here and register and get a list of ILADS doctors that are closest to you. http://tinyurl.com/6na364
A great book that you can read that helps to understand the situation with lyme disease is "Cure Unknown". Written by a Science Journalist who is senior editor for Discover Magazine. She and her whole family faced lyme disease. The book covers a lot, history, science and her personal story and a few others personal stories.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Nice to meet you Scoops I just wanted to reinforce what others have said above, find yourself an LLMD for proper treatment.
I also have peripheral neuropathy in my hands, arms, legs, and feet. It is a terrible feeling and I completely understand what you are going through. Now that my doctor has found the right combination of antibiotics for me, my neuropathy symptoms have greatly improved.
Another thing to look into is a medication called Metanx. Google it and talk with your doctor. It is a combination of the active forms of B12, B6, and Folic acid. I believe that it has helped me recover faster.
Take care.
Posts: 5237 | From here | Registered: Nov 2007
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posted
I was diagnosed with severe peripheral neuropathy with muscle involvment, of my arms, legs, hands and feet as well. I was on high doses of neurontin for it.
After very aggressive IV antibiotics over a 3 year period, for lyme disease, I still had symptoms, although they were not as bad.
After a year off the antibiotics and supplemental detox, I was able to wean off the neurontin. (horrible drug, IMO). I am now 80% pain free and normal function.
If I was not treated for lyme, I would be in a wheelchair or dead. Nice to meet you and hope you can find a llmd.
Lyme is certainly a diagnosis to consider, IMO.
-------------------- I found my original identity! It has been a bit over 12 years...can't blame me for forgetting my password, right?!!
Member red (Member # 1886) Registered: 26 November, 2001 70 posts Posts: 164 | From NJ | Registered: Jan 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Welcome. Glad your looking for answers. Mine is
nerve and bone pain. I hurt all over. Vitamin B12
is great for
nerves. Continue to read and I suggest tesing by
Igenex and finding a LLMD if your doctor does not
know how to treat and refuses to diagnose. Sick
for 2 years before finding out for myself before
it killed me I had Lyme/Bb. Many here can help
and there is much to read.
-------------------- 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
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posted
Wow! Taht you for they responses! It is so true that I cannot get any doctors to agree to trea me for OR that I have Lyme. Even though I have a test to prove it and a Mass amunt of symtoms. They just do not know how r what to do. I can go to LLMD BUT they do not take any Insurance.
I am 33 with 2 young children and going thrue a Divorce. I have plenty of insurance but I do nto have money to pay an LLMD out of pocket. Such a shame!
Posts: 34 | From Hazlet New Jersey | Registered: Apr 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Post in : Seeking Dr. at ... who takes insurance.
-------------------- 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
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
Scoops, as Pinelady mentioned, you can ask for LLMDs that still can take insurance. I know I have read there are some on the East coast, just don't remember where.
posted
Pretty much my only symptoms have been neuropathy and it appears to be fairly common among people who have lyme. My first symptoms were neuropathy but it took another 3 years until a neurologist finally checked for lyme (and of course it came back positive).
By the way, you mentioned that you have plenty of insurance so you might want to check out what the out of network benefits are. This way you can see what you would have to pay and what the ins company would pick up.
-------------------- Same nightmare, different day! Posts: 401 | From East Coast | Registered: Nov 2005
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posted
Infrared light treatments can help, particularly NIR infrared. Lots of info on the net and in previous posts.
Posts: 925 | From California | Registered: Sep 2004
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
I had no idea you could have peripheral neuropathy and not know it!
This has been my main most tormenting symptom that causes pain throughout my body literally scalp to feet..
Infrared sauna's help me temporarily - but even temp relief with this horrendous pain is better than nothing.
It seems that the the neuropthy has progressed after a recent visit to my Rhummy doctor. HE gave me a cortizone shot in my foot for pain. From that point on it was downhill.
THe numbness started travelling up my foot, then up my leg almost to the knee. I can not feel my skin barely at all. Then while at work after an hour long meeting i seddenly could not feel my foot at all. my foot was paralized. I tried to walk and fell. I couldn't move my toes, my foot at all. This lasted almost 10 minutes. Then feeling came back enough to walk a little and it happened again. I went to the hospital and was admitted. They ran tests again. MRI was normal . But my Lyme tests came back postitive again..
My Neurologist is finally URGING me to see an LLMD. He said that while my MRI is clean that LYME can effect individual nerves. This has peaked his curiousity. While I still have no feeling in my leg ( skin) I am hopeful.
Posts: 34 | From Hazlet New Jersey | Registered: Apr 2009
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posted
I have no feeling in my left leg...actually part of it is completely dead (you could pinch it and I wouldn't yelp) and it is so strange. When I touch it, it is like touching someone else, instead of me touching myself because there's no return feeling. It's a really raunchy feeling.
There weird thing about it is that overnight this happened to my leg and foot....and I couldn't feel my foot either. I would take HARD falls. I could not walk whatsoever. I had no control of it at all. I relearned to walk (mine didn't resolve so fast, it took me 2-3 months) but now my foot is hypersensitive and it is SO painful. It now burns and I have to wear a sock all of the time, even in the bath, but putting the sock on is a painful process.
There's a part of my leg that has normal sensation, but 80% of it is dead.
I have Lyme too. My short stint with i.v. therapy (only 30 days) didn't do much, I need much more. My leg happened 6 months after I got "treated" by an llmd.
I wonder every single day if this would have happened if I were able to have money and keep going to an llmd.
It costs so much money, I don't know how people here do it for so long. If you can do it, get an llmd. At least you have a neurologist who wants you to go. That's pretty cool. Good luck.
-------------------- ---Beautiful Disaster--- IgeneX WB: IgM: 18+, 31+, 41+, 58+, IgG: 31++, 39 IND, 41++, 31kda Epitope Test: Positive Labcorp: IgM: 23+, 41+ No LLMD due to money since Sept 2008. Was on Doxy, I.V. Rocephin (30 days), Flagyl. Also dx with Bartonella. Posts: 139 | From United States, East Coast-ish | Registered: Aug 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
You are lucky. My doc told me I was just depressed. Even when I couldn't feel my hands and feet. And when I did all I felt was pain. The sooner you get to a llmd the better.
-------------------- 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
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
BEautiful Disaster, you wrote "part of it is completely dead (you could pinch it and I wouldn't yelp) and it is so strange. When I touch it, it is like touching someone else, instead of me touching myself because there's no return feeling. It's a really raunchy feeling"
YOU JUST DESCRIBED WHAT I AM DEALING WITH TO A "T" !!!
I try to explain to people that you could put a sharp knife against my skin and I would not feel it at all!. SOme days my skin is more numb than others. I was able to walk again that same night. While I still am numb and lost strength in my foot I can walk. But i am scared that it will happenen again ( complete paralysis of the foot). IT is very frustrating.
I am seeing the neurologist now but honestly cannot afford an LLMD. I am a new single mom, going thru a divorce and trying to pay for daycare, my house. It sucks becuase I have insurance but LLMD's don't taake it. What are we supposed to do? wait until we are bed riddden? I am 33 years old with 2 small children.
sorry for venting on you all
Cheryl- New Jersey
Posts: 34 | From Hazlet New Jersey | Registered: Apr 2009
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BEautiful Disaster, you wrote "part of it is completely dead (you could pinch it and I wouldn't yelp) and it is so strange. When I touch it, it is like touching someone else, instead of me touching myself because there's no return feeling. It's a really raunchy feeling"
YOU JUST DESCRIBED WHAT I AM DEALING WITH TO A "T" !!!
I try to explain to people that you could put a sharp knife against my skin and I would not feel it at all!. SOme days my skin is more numb than others. I was able to walk again that same night. While I still am numb and lost strength in my foot I can walk. But i am scared that it will happenen again ( complete paralysis of the foot). IT is very frustrating.
I am seeing the neurologist now but honestly cannot afford an LLMD. I am a new single mom, going thru a divorce and trying to pay for daycare, my house. It sucks becuase I have insurance but LLMD's don't taake it. What are we supposed to do? wait until we are bed riddden? I am 33 years old with 2 small children.
sorry for venting on you all
Cheryl- New Jersey
Posts: 34 | From Hazlet New Jersey | Registered: Apr 2009
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posted
Benfotiamine should be pretty helpful for peripheral neuropathy.
You should look into it, it works pretty well for me...
Posts: 330 | From Colorado, USA | Registered: Nov 2008
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Cheryl there are docs who take ins. You could try
posting in Seeking Doc in xx section to get the
closest one. I would not wait till bed ridden.
Almost there I was and now doc says it will take @
a year of treatment which will cost you more in
the long run. If you can get to a LLMD he may be
able to help you with disability where you can
keep your job and ins. while you are doing the
treatment. I was stubborn and would not give it
up to expedite treatment. If I had I would have
been a lot better off. As now I am laid off. If I
had known this I would have taken leave instead.
-------------------- 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
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Depending on your insurance, you may be able to bill your insurance company and recover part of your visit. I get about 60% of the office visit. It would be the prescriptions that might be a real problem but they may be covered too. You will need to call your insurance company to find out.
IF you had been seeing an LLMD, you would have been told not to take steroids and you likely would not be dealing with the severe worsening of symptoms you've experienced with the administration of steroids. Many here have had a similar experience with steroids.
It really pays in the long run to get an LLMD even if you have to borrow money to get one. Really sucks to be so sick that you are forced to give up your job like so many of us here.
Pinelady is right, there are some LLMD's who accept insurance.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
I developed neuropathy in both feet about the same time that I discovered that I was b12 deficient! LLMD prescribed IM injections of cyanocobalium (B12) daily, for 2 months, then weekly, then as needed. PN (neuropathy) went away! It can be caused by B12 deficiency; and can be cured with B12 injections. Also helped relieve exhaustion, depression, and memory! Google for more info. B12 deficiency seems to be very common these days, not only for Lymies. It's not a common blood test run by mainstream Drs. I became sick with Lyme in 1998, and didn't get diagnosed or treated until 2007.
Not medical advice; I'm just a long time Lymie.
Posts: 5 | From Florida | Registered: Apr 2006
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