Neuropathy is killing me, need encouragement

Hi all, my feet, ankles and calves are killing me...burning.  Any thoughts would be appreciated.  I'm going back to my LLMD March 6th.  I have to say, my psych told me I have somatization disorder.  I got pretty upset.  He doesnt believe in Lyme either, so I go to my LLMD in secret.  I understand that anxiety causes alot of things, but really??!!  I don't know...what is everyone's thoughts, honestly?  I have had severe issues with anxiety for about a decade.  I have mild ulnar neuropathy on nerve conduction studies and Johns Hopkins did a small fiber biopsy that said 'possible small fiber neuropathy'.  If it's showing on tests, but they have no cause (idiopathic) does it still have the possibility of being somatization disorder??  So tired of this...

[JackieCalifornia]

Hope!  Long time no 'see'.  Sorry you're having a hard time.

What's the saying -- 'When all you have is a hammer, every problem looks like a nail.'  I think docs are similarly bound by their speciality -- likely because they wouldn't have chosen a particular specialty if it didn't call to some internal aspect of their own world view.  That's my dollar's worth of psychoanalysis for the day ....

.... and that psych who tagged you with 'somatization disorder' -- well, he too is a prisoner of his professional paradigm.  To a psych, every physical ailment could well begin in the head.  Phooey.

Till you get the Lyme beaten down into a whimpering pile of smashed bugs, I wouldn't worry a lot about whether your aches and pains are Lyme-caused or psychological in origin.  Anxiety is also common in Lyme, due to brain irritation and inflammation.  Sure you could be manifesting psychological ailments in your body ... just like I'm totally stressed out lately, and my whole body aches sometimes from the stress.  Is that somatization?  Yeah, I guess.  It goes away when I'm relaxed.  

If you feel it might help, then 'talk therapy' would be worth trying ... but if not, then continue focussing on the possible physical causes.  Just don't let them bully you into thinking 'it's all in your head.'  Lyme messes with the whole body, including hormones and emotions, and if you assume you don't have Lyme and are instead having psychological issues only, then you'll not kick the Lyme.  So I'd be cautious about accepting a psychological diagnosis that then stops you from pursuing a physical source of the ailment.

In brief:  take care of the physical causes of your suffering, and when those are treated, then consider whether there is a psychological aspect.  After being ill a long time, it does affect the mind, just as any major life upheaval would do, but that doesn't mean you don't have a physical illness.

At least that's my take ... and since I'm NOT medically trained, it's easy for me to spout off.  But cut yourself some slack

Do you take magnesium supplements?  It's very soothing.  It helped me a lot when I was really sick with Lyme, and it might also help the other symptoms you are having.

See what your LLMD says.  He/she is the one with the insight.

My approach would be to assume it's physically caused until a knowledgable doc (the LLMD) says otherwise.  Take care, let us know what the doc says, okay?

[nutrinut_bob]

Neuropathy, that quickly caught my eye as I just had a doctor try to tell me that was what was causing the movement in my hands.  Not.  What I have is some very fine threadworms known as filaria, they can cause elephantiasis.  Generally considered a tropical disease, but for several years I worked in a book making factory alongside many Yemenis.  The disease is endemic there and one can be asymptomatic yet have it.  All it would take is for a mosquito to bite the person who is carrying it, and then you.  The filaria have this interesting little symbiotic bacteria known as wolbachia that causes swelling and inflammation.  In my case there is lymph backed up below my hands and alongside the ulna.  It looks like you, but press and you might find a fluid filled lymph duct.  These wolbachia can also cause changes in skin texture and color, primarily by stimulating the formation of something known as Neutrophil Extracellar Traps, or NETS for short.  In some these really look like nets, an example being a girl I know whose skin had a red mottled appearance.  But the color was really in the lymph below her skin.  These NETS are made to trap extracellular bacteria or larger things such as the filaria I have.  These NETS however, also serve as protection for what's trapped on the other side.  It's hard to get drugs through them, so I found when my calves were recently nearly covered with them and worm medicine wouldn't get to where the worms were.  I could kill them if they came out of there, but nothing went in unless injected in. It's also hard for other components of your immune system to get through the NETS.   Wolbachia are also carried by ticks.  Wolbachia's drawing of neutrophils could be behind the bullseye rash.  In my case, the good news is kill the bacteria you kill the filaria, they can't live or reproduce without wolbachia.  Doxycycline does the wolbachia in.  In some cases your immune system will be trying to disassemble the NETS, which of course are made of your DNA, so it appears to the doctor's test that you are making antibodies to self and they call it autoimmune.  The rosacea of one of the supposedly autoimmune disorders, Lupus, stems from the production of NETS, and I'll bet wolbachia are involved somehow.

[Hope75]

Thanks guys, I do need encouragment from time to time. I'm trying to stay positive but it's really hard when you're in chronic pain.  I don't know how somatization disorder could be my case, if I have those studies showing nerve damage.  I think you're right JackieC, about the hammer/nail....and I love hearing from you by the way.  You are the calm in the storm for me, many times, and you should know how much you are appreciated - truly.  :o)

[Hope75]

Still killing me...

[JackieCalifornia]

How about a new doc for a second look?  This has been going on tooooo long, but you knew that already.

There is a (new to me) link at the ILADS website where they will send you contact info for LLMDs in your area:

contact [at] ilads [dot] org

Someone posted here after doing that, and the doc located that way sounds pretty fringe-y, even for an LLMD, ha.  So it ain't perfect, but it's better to take action, eh?  What's the saying:  'You don't ask, you don't get.'

Somatization indeed.  Good grief.  

Sending you a private message now.  Hugs!  J.

[mojogal]

Do you have Diabetes? I never did until I had Lyme and regular doctors blame it on Diabetes. My toes on both feet and balls of both feet are numb and that is just too coincidental for me but they do say out of control Diabetes it a big culprit. I say its the Lyme.

[JackieCalifornia]

Hope,  I just did a quick google search for LYME NEUROPATHY and found a lot of data, some of it reaching back 20 years, so this is not new to the medical field.  Here's just one abstract, from 1993:

========================================
Muscle Nerve. 1993 Nov;16(11):1261-4.
Acute Lyme neuropathy presenting with polyradicular pain, abdominal protrusion, and cranial neuropathy.
Krishnamurthy KB, Liu GT, Logigian EL.

Division of Neurology, Brigham and Women's Hospital, Boston, MA 02115.
Abstract

A 53-year-old man developed multifocal radicular pain. The diagnosis of Lyme neuroborreliosis was delayed until bifacial paresis and right lower abdominal wall weakness developed, prompting further evaluation.

Cerebrospinal fluid (CSF) examination showed aseptic meningitis.

Antibodies directed against Borrelia burgdorferi were present in the serum; higher titers were present in the CSF, indicating local antibody production.

Electrophysiologic studies showed both an axonal polyradiculopathy as well as demyelinative facial palsy.

Ceftriaxone therapy led to marked improvement in pain and facial palsies.

PMID:
    8413380
    [PubMed - indexed for MEDLINE]
===================================
Treatment options have likely expanded in the two decades since this was published.  What does your doc say about treatments options?  

[Hope75]

I'm still hurting:(  Thank you for the info.  My LLMD prescribed Lyrica, several oral abx, lamictal and ativan for my anxiety.  I tried the Lyrica but it didn't seem to work and my shrink put me back on Pamelor, which took an edge of the pain off, but boy is it angry today.  I took all four of my abx last night (pulsing them), so this may be a herx.  I just know that my body hurts and it's hard to keep my emotions in check...and keep going to work full time AND be a mother.  

[JackieCalifornia]

Just from what I read in postings here, it seems like Lyme affects some of us more in the muscles/joints than it does others of us ... the question is what to do about it if we are the ones with the body pain.

I skimmed the previous messages above, and didn't see anything about magnesium (Mg) supplements.  Have your tried them?  They made a big difference for me when I hurt all over.  Different formulations seem to act differently in me and in others who have commented here, and I like best a kind that is a blend of different kinds of Mg:  citrate, aspartate, orotate.  I buy mine online and have been very happy with it.  The name of the one I get is Magnesium CAO [short for the three kind of Mg in it].  I tried other formulations, but they didn't work as well for me.  Everybody's different, tho.

Also try epsom salt baths.  They are Mg, and it is absorbed easily through the skin, besides being nice and warm and relaxing.  Can't hurt to try, yes?

Epsom salts are available at most drug stores, I think.  It's what my grandparents used to use when their feet were tired and achy!  A good soak is good for the soul/soles.  :)

imho, and untrained as I am medically speaking, I think somatization disorder is a cop out when docs can't figure out a physical cause, so it MUST be in your head, right??!!  Sooooo wrong.  Sure, there are people who experience body pain from mental and emotional stress, but it's too easy for docs to slap labels on people these days.

If you were 'just' a head case, you wouldn't be worrying over whether the doc is right about you having 'emo' issues alone.  I get body pains and aches when I am stressed too, but not like when I had Lyme.  You know your body and you are not looking for attention.  So that takes us back to physical ailments.  Just focus on what the Lyme doc says and try Mg either oral or through bathing.  See if it helps, and let us know!  Hugs -- J.

[Hope75]

thanks Jackie.  I also forgot to answer the other poster about diabetes, I just completed a 3 Hr Glucose Tolerance Test - normal.  :/

I have Magnesium Malate at home and haven't taken it in a while, will do tonight.  I also have Epsom Salts.  I'll soak too.  

Thanks again, wish I could write more, but it exhausts me ;{

[mojogal]

I wrote about the diabetes but since that post I have been to my LLMD and she thinks the constant numbness in my toes and feet are not from diabetes but from the Lyme  and I get burning, like electrical shocks all over and its not in our heads. Its real. I am taking supplements galore and so far nothing has cured the numbness. I wish you luck. If you find something that works make sure you post please.

[JackieCalifornia]

Sorry, I forget if you have any co-infections ... that could be making things worse and there may be something specific the doc can do to treat the co-infection if not already underway.  

It's also possible, given the tick-y world in which we live, to be infected again without realizing it.  I was walking in a nearby park this weekend and stayed on the paths except for about 20 feet down a slightly grassy (but mowed) hillside where the path has washed away.  Got home less than an hour later, looked down at a tickle on leg, and there was a doggone tick making his way up my calf!  It was a small tick, tho not as small as Lyme ticks are said to be, and it was just motoring along.  

I think I also, some years ago now, when I got so very ill with Lyme and babesiosis, that I had been infected for a while, feeling just worn out and out of sorts for a couple of years ... and then a likely reinfection (with babesia as a kicker) suddenly made me very very ill, and that's what finally got me to an LLMD and a diagnosis.

It's easy to focus on a baseline of current illness, and also easy to forget that we are not wrapped in Saran after the first infection and can be infected with a kicker dose of the same illness or a new cocktail of reinfections.  Docs tend to think in static state as well, which doesn't help.

So .... maybe you got re-infected, or infected with an additional ailment that has made things worse?  Might be worth asking the doc about.

Take care!