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?

--------------------------

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

-----
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.

---------
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

--------------------------
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: