I need a detective!!!!
 

I am 41 years old and have had burning in my feet since I was 36. I have a long, long history of lyme disease and co-infections but most of my symptoms have been far diminished. I have been tested for:

MS
Autoimmune neuropathy
Diabetes
Thryroid disorders (have hoshimoto antibodies but no symptoms adhormone evels are good)
Celiac
Lesions of the brain and spinal cord
Heriditary neuropathy
Sjorens
CIDP
Food allergies
autoimmune markers
B defficiency (trying to obtain number from OCT blood draw but prior to that it was 408)

ALL NEGATIVE.

The pain and the disease are progressing. Within the first few months of this starting in 2009,the pain was so unbelievable, I had to go on meds. One day my feet were fine, the next I had neuropathy. I can tolerate nuerontin the best so I've stayed on it and ramped up to 3600 over time. I stayed at 3100 for alomst 2 years, until 3 months ago, when everything exploded and began rising up my legs. The pain is now so bad, I can't put blankets on, or it triggers worsening pain. My legs sting, burn and pinch. My feets burn, ache and feel stiff. I have body wide tingling and burning that just terrifies me. This WHOLE disease terrfies me!

I was diagnosed with lyme disease when I was 26 and spent several years of my life on IV antibiotics along with enough oral abx to literally kill several horses. However, I have not been on any of the antibiotics known to cause PN. In 2009 when this neuropathy started, my infectious disease doc IMMEDIATELY put me back on IVantibiotics (Rocephin) to try and stop the neuropathy. It didn't work. So I went to another guy who put me on another 6 months course of IV drugs- some so aggressive, I was bedbound for weeks on end. Again, it didn't work (still needed the neurontin). I remained on oral antibiotics (which make you so so ill, so much so you can' really function and can be worse then lyme itself), but i hadn't needed to ramp up the neurontin until now----4 months into an IVIG program. HUH?!

I went on the IVIG per a Yale neuro who studies lyme and what HE believes is no longer lyme this far in, but an autoimmune condition that lyme morphs into after it's been in the body for years. This is WIDELY debated and my lyme guy strongly disagrees and believes if you still have symptoms, you still have lyme (also quick to say ANY symptom you feel is lyme!!). Not sure which is right but together, we all decided it was worth a shot since the neuropathy wasnt relenting. I have been on it now since Oct of 2012 with ZERO benefit and only worsening problems.


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To start IVIG, I had to agree to stay off all antibiotics (had been off for about 6 mos already). Though we never made any real rogress WITH the antibiotics. I got on very potent stuff only ONE month after the PN started, I feel like if this WERE lyme related, the 3 years of lyme drugs that followed, should have done the trick!! But, this is the LONGEST I have ever been off antibiotics and now im in severe pain.

Could the IVIG actually make PN WORSE?

Can treating as if you have a B problem,without a B problem, still be successful?

Where the heck do you turn when you've exhausted what feels like EVERYTHING yet you are suddenly progressing? Ive been battling something or another since I was 26 years old. I'm a fighter. I can't believe there is NO way to help this!!!

Can ANYONE give me some insight or direction PLEASE?

Kate

I'll tell you what I think... but this is not a diagnosis by any means...

Antibiotics work by affecting either the cell wall of the infectious organism, so it dies, or by attacking the DNA of the organism.
With time they will do this to you too.

If your dorsal root ganglia along the spine are damaged by the Lyme process or the drugs, that is a serious thing. Some people lack the genes to make the nerve growth factors to repair this.

There is a special MRI test that will show dorsal root damage. Have you had it?

This is the link to that thread:
http://neurotalk.psychcentral.com/thread147771.html

The fact that gabapentin works for you, hints at this because that is the level that this drug often works at.

Supplements to target mitochondrial damage are acetyl carnitine,
lipoic acid, and CoQ-10. Ribose powder (a sugar) also may help
with normalizing ATP production in the mitochondria.
Magnesium is important too, as it functions at the mitochondrial membrane.

I have these supplements in the supplement thread:
http://neurotalk.psychcentral.com/thread121683.html

If you haven't read the mito threads yet, I'd search them
"mitochondria" because this is where the damage can occur to nerves.

In your case things are really complex. Could be that a bunch of factors co-exist given your Lyme infection which impacts nerves, and the antibiotics which also carry their own risks with long term use.

For symptom relief of your feet, have you tried Biofreeze gel?
This really works for me and some other posters here too. The gel carries the menthol thru the skin quickly, and the menthol then stimulates cold receptors to override perception of the heat sensors which seem to be the most affected by PN.
Biofreeze is now available at low prices on Amazon, and iherb.
I've used it for years now when my feet flare up at night. It never fails me. I think it is worth a try... as it is under 10 dollars.
A little goes a long way. I learned this trick from physical therapy I had several years ago for a tendon injury. My therapist mixed Biofreeze 1/2 and 1/2 with the ultrasound lubricant for my Ultrasound treatments, which they ramped up in power.

Welcome to the forum. I know how it feels to not have a diagnosis or clear path to follow. Mrs. D is extremely knowledgable about supplementation, and I see she has weighed in. I am trying the Biofreeze and also the Morton's Epsom lotion, as I have quite a bit of sensory pain, especially in my left foot.

This is a great place to find people who can relate to chronic pain. :hug:

A detective is important! Mrs. D is wonderful and we all help each other here. Welcome!

I have rarely found reg. doctors to be detectives or scientists. Most only know what they learn in school. Just a few hours on nutrition and supplements. Sad. So, integrative MD's are important. They know how to safely help and they know how to use blood tests, diet and supplements. You might try to find one and bring the information you learn here.

I have not had this test and have already sent an email to my neurologist for information on where to have it done. Thank you. If it does prove to be the cause, is there anything one can do (other then trying supplements)?

My feet (all my pain is symmetrical) burn 24-7 when the Neurontin isn't working. Now, it's my legs and random places all over my body, including my mouth. The neuro stated that when it travels or is spotty, it's likely autoimmune. Given the aggressiveness and destruction lyme does to one's body it wouldn't surprise me if some of my issues were autoimmune and some were still lyme or other factors (that we can't find). HOWEVER, if the PN portion of what I'm dealing with was autoimmune, the IVIG should be helping.

I do work with an integrative doctor already but he's very lyme disease focused (for the most part). He's had me do chelation, lyme therapy, B vitamins, elimination diets, etc. As I mentioned- we've been aggressively attacking this neuropathy for 4+ years. He most recently mentioned taking silver- which I won't do.

I feel like we are MISSING something. I don't know why, but it's just the feeling I've had from day one.

I did get my B labs back and I don't understand the results. It says the normal range is "243-894" and I'm 1799. That is VERY surprising considering I hadn't started vitamin B treatments yet!

The integrative doctor wants me to go back on the antibiotics(Bicillin injections and Septra) to see if it helps calm this down but It feels like such a vicious circle. If I beef up all my B's and mito support, can I protect myself form further damage from the antibiotics?

THANK YOU so much. I truly don't know where to turn and NEVER thought I'd still be dealing with this 4 years later.

Kate

B12 can get elevated from what is called a dysbiosis in the bowel.

When certain organisms start to proliferate, sometimes after antibiotic treatments (usually oral), those organisms can make B12 and you absorb it that way.
http://www.cnelm.co.uk/Nutprac/vol9i...LevsB12.GM.pdf

There are other disease states that raise cobalamin when no supplements are taken:
http://www.ncbi.nlm.nih.gov/pubmed/14636871

http://www.ncbi.nlm.nih.gov/pubmed/17981373

I do hope for your sake that the resurgence of your symptoms are not related to a malignancy.... this type of PN is called paraneoplastic.

Good you have a integrative MD. Just like other doctors, they all have different ideas. Maybe you could find another if you need to. Sometimes it takes finding the right one...I am sorry you are dealing with all of this. Glad you found this forum.

A malignancy? And how does one get tested for a random cancer? Ugh :(

I always have "dysbiosis" btw. Always. So, that might make sense. I should also note that every. single, neuro test I've done has come back negative. All in office tests physical tests (reflexes, gait, etc) are always negative as well. **Though my skin biopsy shows the nerves diminishing, but not yet in the abnormal range. I suspect if I continue down this path, it will be my first confirmation of something actually happening.

Regarding cancer- I have to imagine there would be something in my bi-weekl blood draws that would raise a red flag or two. When on IVIG you have to have constant monitoring.

The other thing that's perplexing is the B. I KNOW I was getting relief from it. There was NO doubt it was putting out the fires until 2 days ago. If B isn't an "issue" I don't understand why it would provide relief at all.

Kate

Thank you so much for your compassion. I hope you are healing from your painful journey as well..

there are blood tests for paraneoplastic cancer that check for paraneoplastic anti bodies such as anti hu and anti yo etc. ive had those blood tests done.

I have to ask: Did you actually get bit by a tick...that you observed? Are you in a known Lyme area? Did you get the bulls-eye rash? I know in many cases the rash doesn't appear.

I ask because autoimmune disease can (and is known to frequently) cause false positive lyme tests. Did you have a Western Blot test?

And just because you have negative labs for autoimmune, doesn't mean you don't have an autoimmune disease. At least 40% of Sjogren's patients are sero-negative. Did you have any other tests for Sjogren's beside blood work...like a lip biopsy? Do you even have any symptoms associated with Sjogren's?

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Hi, yes CDC positive. Multiple times. Actually one of the highest positives you can get at 9 bands (some triple positive). To be CDC postive you need 2-5 bands. I also tested positive for the co-infection Babesia which can also cause neuropathy. It's been quite a nightmare. I was suddenly ill after being perfectly healthy my entire life but it took over 18 months to get tested because even in the most endemic state, Dr.'s ignore it. Once it goes that long without treatment, full eradication is nearly impossible. Deer ticks are the size of a period at the end of a sentance (i've pulled two off my little girl) so they are near impossible to find, unless you check daily and know what to look for. My docs believe it's likely I was bit in the head bc ALL of my symptoms have been neurological in nature. Being bit in the head, one would never see a localized rash due to hair, and only 30% of persons bit actually recall a bullseye rash (most lyme rashes look like bruises, not a bulls-eye but most peole don't realize that either).

I personally do not believe in false lyme positives, only false negatives. But, that's a debate for another day, on another forum. ;)

I do not have a single Sjorns symptom.

Thanks so much for your reply,

Kate

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Thank you! I will ask my Dr. about these tests.

Kate

I have no doubts that there are differing opinions on false pos/neg. I just know that autoimmunity does some crazy things to labs results of ALL kinds...in both directions.

Exactly why I asked about the bite. Rashes don't always appear, and on the head would never be seen...and of course ticks commonly end up on the head.

Regardless, it's a shame that so much time went by before you were tested and treated.

If the Lyme triggered an autoimmune disease (which may be sero-negative) and that's certainly possible, I'd think you would have other AI symptoms. You say you have no Sjogren's symptoms...what about symptoms that are common with other AI disease like joint pain, muscle pain, profound fatigue, etc? Do you have ANY other symptoms that haven't been explained by the Lyme?

I used IVIG for 9 years. It does have a good reputation for 'some' (but not all) types of PN associated with AI disease, but your case is not typical of that. Lyme is a whole other animal and if your DRG (dorsal root ganglia) has been damaged then IVIG may not help.

I doubt I'm much help in many aspects of this discussion. Wish I had more to offer. MrsD's suggestions are worth trying...she knows her stuff. The MRI (actually an MR Neurography) she mentioned is from my thread from a couple years ago. Mine was done at Johns Hopkins, and as far as I know, it's still the only place that does it...but I could be wrong. Certainly worth checking and asking about though.

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I have never had any type of join pain. I absolutely used to have crushing fatigue but that's been gone a long time now (several years). I don't have any muscle pain any longer either. I used to get random shooting pains in one muscle and then it would shoot somewhere else but these were all very intermittent and again, have been gone for years. Right now, my only symptom is PN. I still get brain fog but it's not nearly as bad as it was those first horrifying years (used to get lost on my own street).

Something that has me scratching my head (and has for a long time) is that I can't really pinpoint what made the other stuff clear up. I was on years and years of treatment for lyme but never really got better ON the drugs, only once I got off for a while and my body got rid of all the toxicity for the copious amouns of antibiotics. It's been very strange. When the PN started it felt like other things kinda faded away, but that's only as I think I recall it, I can't be totally sure. Im thinking this would support an autoimmune theory?

I have great energy, run with my 5 & 9 year old girls, get to the gym for a bootcamp type class 2-3 times a week, have an active social life, etc. I soak up every. sngle. moment because i have been in a place I know all too well can come back without notice. I lost a decade of my life to Lyme disease and can't imagine losing more due to PN now.

Thank you so much for your help, i'm grateful!!

Kate

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Something else to note- though I have a lot of respect for doc's willing to treat for lyme, they often blame EVERYTHING on lyme so it's hard to truly know what's causing what. Then, the ones that don't believe in lyme (chronic) blame every symptom on ANYTHING but lyme. It's an insane place for a patient to sit. The symptoms for so many diseases mirror one another, I'm not sure I'd really know what was more AI then Lyme?

Kate

Hi Kate, I may not be of much help, but I wonder if the cure itself hasn't been the cause (at least partially) of the further problems.

You mention you had a couple of long stretches on antibiotics. That surely must have killed off or at least highly stretched your immune system.

I came by this article a couple of days ago, where antibiotics are mentioned: http://www.nytimes.com/2013/05/19/ma...nted=all&_r=1&

It's a long read, but it may give you some ideas, or a different way to look at your current problems.

Hi Kate,
 

I just wanted to say Hi and let you know that I'm hoping that some of the info your getting here is helpful.

I feel a certain kinship with lots of people who post on this board who have long-ongoing pain and other problems which hit home with me (brain fog!), difficulties in finding helpful MDs to champion your/our cause and the ability to learn and search out potential causes of problems.

I don't really have anything to add, except that I'm learning from this discussion and wish you the best.

Hi Kate
 

I am so sorry to hear you have a worseing of PN. Lymn disease, or any number of auto immune disfunctions can trigger this. I don't think The IVG therapy made it worse. If you can, look into Ketamine infusions. Sometimes they do this for RSD. There is a facility near me that talks about it on their web pages. Tampa Bay Hospital. Origionally they did this for soldiers severely wounded and left with neuro pain. Doctors are now doing this for RSD and PN. If you have this body wide, I believe this treatment is available somewhere in this country. Please don't hesitate to ask your doctors for more help with pain. I hope you have good physicians that have some compassion and maybe able to stear you to another type of therapy. I take pain killers for it, I am not brave enough to do without. Have it only in my left foot and ankle. I can't imagin this being all over. I hope you can find more help. Have you tried a teaching institute or Mayo Clinic? I wish you less pain today. ginnie:hug::grouphug:

the first tests i had after muscle/nerve tests were a series of ultrasounds and x rays of the few places that had not already been done for other reasons:p.

i looked blankly at the neuro and said *why*.
"malignancy" she said, is large cause of idiopathic PN (even tho she knew the flu vaccine had done it)

i got all kinds of odd things inside me.....but nothing malignant

i wish u well. i understand the pain and frustration

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Thank you amike, I hope you are finding ways to be more comfortable, too. I appreciate your reply.

Kate

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Thank you so much Ginnie. I haven't heard of Ketamine shots but will certainly look into it. Both my neuro and lyme specialist are urging me to add elivel (sp) to the nuerontin to help ease the pain. I am being overly stubborn I suppose. I am terrified to get stuck in the pain medicine trap like I feel I've already been in the past 4 years of being on neurontin. Don't get me wrong, not feeling like the flesh is being burned off the bone had been wonderful but it also gave me a feeling of false security. Was this disease worsening all the while but I just didn't feel it?? I have a pharmacist friend who told me that neurontin does become less effective over time so perhaps that's what's happening? It may be a bit of both.

I got my skin biopsy results back and the nerve fiber density is HALF of what it was when I had my last biopsy in 12/11. NOT a good sign. I'm still within the normal range, but not for much longer. Grrrrrrrrrr.

Since I last wrote, we decided to go back to the B12 injections. I had stopped them because I was breaking out all over my face and neck. At that point, the oral seemed to do the trick. So I've been back on the 10mg injections and am at least able to sleep at night. I do burn in my feet and legs (and inside my mouth- ugh!!) from the second i wake up however, but I'll take the overnight "relief." I used to have the mouth burning a few years ago but thought I was passed it.

I met with my lyme specialist in upstate NY (I live in CT) yesterday and his two non negotiables were going back on a low dose antibiotic and intensely supporting the mitochondria with supplements. Other then that (and continued B and ALA/NAC), plus IVIG, Im not really sure what else there is.

I asked my Yale neuro about the dorsal root MRI and his receptionist told me he had never heard of it :rolleyes: WHAT-ever!

I can't seem to find where it's done, though I have scoured the internet like crazy. I think someone mentioned john's Hopkins...do you happen to know if they require a referral to be evaluated? I went through their neuro department online and it didn't mention the diagnostic equipment they have.

Thanks so much for all your support and kindness, it's greatly appreciated. Please keep the suggestions/ideas coming if you think of any. Have a wonderful day!!

Kate

hope this helps


http://www.hopkinsradiology.org/Musc...al/Neurography

http://www.youtube.com/watch?v=Y6kAZr6BUc0

http://www.neurography.com/locations

Hi Kate
 

The kind of Ketamine I have heard about is through IV. It was origionally tried on soldiers who came back injured from war. They have neuro damage, and this medication showed promising results. John Hopkins May need a refferal. I have heard mixed results from people who went there for Neuro damage.\
I came from the mid-west, and I was always worried about lymns disease, since my back yard was woods.
I hope you get some adequate help, and that your symptoms just go away. My own PN is lousy in my foot and ankle, I can't imagin what you must feel. I just wish doctors paid attention more to this kind of pain. Take care of yourself Kate. Keep trying.

I had Ketamine infusion through a catheter, before my last spinal fusion. It brought me about 4 months of pain control. The doc. used a floroscopy to thread through the spinal area that I had damaged.
Ginnie