this or other set-backs set YOU BACK! I've always appreciated your web-site and the info it's offered. Please keep it up to date, as so many need to LEARN what they NEED to learn about! Meaning their tests.
Lymes' is as nasty if not one of the more nasty nerve diseases one can get. Keep and treasure the relief you got in the interim, and view this as merely a set back. I am jealous that you could walk MILES! To do one mile is one of my short/long term goals...
Now? Fight for more relief! These nerve pains, especially the 'immune' related ones, can and do morph into other issues or add to more issues. I believe we all have had that experience. Thing is they mite be connected or not...we shall never know until the bean counters count out the actual connections...if they truly do.
My heart is with you and for you and hoping for less pain in the near and long term! - j 's

As some one who had a very obvious case of Lyme 16 years ago, I know that this disease is not inocuous. That said, I feel I have a titer because I carry antibodies to Bb, just like I have antibodies to Rubella, Measles, Varicella, Hepatitis, Ditpheria, Tetanus, Polio etc. Diseases that I had or immunizations that I had. I don't believe my Lyme is active any more. I believe it did damage. Just like any infectious disease wreaks havoc on some people, Measles=deafness, Polio=post polio syndrome, etc.

At this time, I buy the autoimmune mimicry, by any other name. I think my immune system was damaged, along with my nervous system....oh, heck, all of me was damaged. So now I am stuck and whatever they end up diagnosing me with is just another name for molecular mimicry.

I did do antibiotics twice for extended periods. The only other thing I didnt do was IV ones. I did not take Metronidazole for more than 2 weeks and I took a really minute dose...I was too scared of neuropathy from it....Ironic, that I already had PN, and didnt know it.

I truly hope you can do something to stop the PN and fatigue. I do know how rotten you feel. I hope your case is acute enough and they can knock it out. My vet is more concerned about my dogs getting it, than my docs were when I got it. My vet says it is really serious.....maybe I should see him, lol.

maybe we should, a lot of good therapies for humans come from therapies first used on horses or dogs.

My dog is doing better on prozac than I did.

Jizajane,

What symptomes confinest you that you did have lyme?
I am asking you this because when i heard that i had pn i have done several test
all turned negative.
With last test i have done and send to cologne(germany)that is where the best lab is for people from holland
So what kind of symptomes did you have that made you think that you had lyme?

In addition to the PN symptoms, I have had joint aches and pains, a swollen knee with fluid, problems to eye nerves, inflamed sinuses and infections, and fatigue. Over time, my white blood cell count got lower and lower, and I stopped making antibodies to bacteria, IgG antibodies, to be precise. My CD57 level became very low, which is also typical. But mainly, it was neurological. I have symptoms of Bartonella: this affects the lining of blood vessels, and I get a new kind of "migraine", an absence phenomena that is due to extravasation of fluid around blood vessels: blind spots and numb spots on my fact and tongue or lips. I also have very cold hands, and feet which hurt when I put them on the ground, which is said to be typical of Bartonella. My adrenals pooped out and my cortisols were low. I became hypothyroid.

All this can be attributed to lyme, with the central findings bartonella.

Everything got better with treatment of the lyme until this winter, when I had a set back. But I can now say that I am improving from the setback. It seems that my adrenals were not doing well again, and my BP has been exceedingly, terribly low, which is why I've been so weak. This is improving and I am doing better.

I am now on Diflucan and beginning grapeseed extract. I am taking higher doses of circumin than before, a long acting kind, which may or may not be helping. An osteopath is working on my neck, because I was afraid that tension in my neck might be affecting how my body deals with changes in gravity, like standing up. I don't know if it was reasonable, but I do think getting better is coincidental with him at least. My BP has been running in the 80s over 40s - 50s. when I'm lightheaded. It's probably lower at the times I really feel like I'm going to pass out, but I hadn't bought the blood pressure cuff then, and now that I have the cuff, I'm getting better.

A friend says it's the talisman effect. Carry around the cuff and I won't pass out!

Best to all

LizaJanee

Sometimes I feel I send these updates to the wind...but here goes...

Last I wrote I was seemingly having a recurrence, and was having very low blood pressure, about a month ago. My doctor felt it was adrenal--not autonomic---and gave me adrecor, a supplement marketed as adrenal support. My blood pressure normalized. I had cranio-sacral massage therapy to my neck (in case it was pressure on the carotid sinus or vagus nerve which can affect blood pressure, because my neck WAS hurting). At the time I also had burning of the fingertips, and around my mouth, old neuro sx friends.

My doctor stopped the diflucan, and I'm just on grapefruit seed extract, which is said to be bacteriocidal to the lyme bacteria. ????? I no longer question too much, as long as the thing is harmless, and it seems harmless.

And now, I've been totally better for over a week. Maybe 2. This weekend I walked 6 miles on Saturday, a 10 year record. I wanted people to read that, so that you could see that even when things wax and wane, and there are bad times and good, there can be a trajectory in the right direction.

I feel that even with bad spells, the overall trend is good, and I'm grateful for the lyme diagnosis and treatment.

Hi Folks,

I don't know if anyone reads these at ALL, but I'm here to post good news, and news I think is important for all to hear.

Last update was May. My neuropathy began, seriously, in 1996-1999. So, the fact that this summer I bought myself a bicycle, says something major about advances in my balance. It took a lot of research to find the best bike for someone with weak quads and not the best balance, but I found a good bike (I do wish, in retrospect, it was an old-fashioned girls bike but just as light as it is, which I could not find). I also went hiking, biking, and kayaking. The neuropathy has continued to improve, with more sensation returning in my toes, and more movement.

I continue to feel more well, although still, I know I'm not normal, but I am aging.

It now seems that in addition to lyme, ehrlichiosis, and possibly babesiosis, I do have bartonella. I am taking an herbal antimicrobial for bartonella and have had a herzheimer's reaction to it, which indicates infection.

I am very serious that people with any chance of having lyme must find a really good LLMD, a doctor who belongs to ILADS, and not the standard infectious disease lyme organization, if one really wants to get treated thoroughly for all the diseases carried by infected ticks. My happy ending is not the only one. The lyme boards have other happy endings for people with chronic neurological infections, but mainly through ILADS doctors.

I continue to suggest that people with "idiopathic" peripheral neuropathy get tested for lyme by a lab that specializes that insect borne disease, not by a standard lab such as quest, labcorp, or a regular hospital.

It is important to understand that the infection and co-infections can cause the tests to become negative, so a good doctor can make the diagnosis evene in the absence of antibody tests. (For instance, I have granulocytic ehrlichiosis; it affects white blood cells which make antibodies; therefore, I stopped making antibodies which would have made the tests positive. I had 8 negative tests before the specialized lab got a positive, looking for a different antibody. I had a diagnosis of immunodeficiency which would make tests negative. The immunodeficiency was FROM the illness!)

So, there is hope even when there is no diagnosis for years.

I have been reading the updates.

To be honest, I think this is why my doc keeps me on IVIG.

I am a definite acute case of Lyme. I also tested + for Erlichiosis on Igenex, but I was treated immediately...well, OK three weeks after the bite, and was told or cautioned I would test negative for Lyme the rest of my life if I took the antibiotics. My titer was climbing and I had a classic EM. I live in an indemic area....no doubt it was an acute case of Bb. But you know if they told people we had that up here, it would hurt tourism.

I don't know, I have SOOO many reasons to have PN....possible hereditary, spinal trauma, Lyme and autoimmune disease....take your pick, heck take them all.

I am glad you are improving.

Am a fairly new member (7/10), and yes - some of us do read your posts or we wouldn't be responding.

Am very interested in the Lyme disease thing as you have presented it and urged that the blood be sent to Igenex. Was tested right off the bat for it when this neuropathy began in January, but at the Cleveland Clinic and who knows where the blood was sent - I don't. So will ask that more be drawn to test for Lyme and its piggybackers and sent to Igenex.

It's awful that a diagnosis was so long in arriving for you, but as you point out you do have waxes and wanes of your diseases and that's encouraging. You haven't let your problems get you by the tail without fighting back. That's real spirit.

And thanks so much for all of the tremendously informative things you've posted for the rest of us, such as the charts. Plan to take the list of tests to my next neuro appointment on 9/21, although I did have lots of bloodwork at the very beginning - but not the peripheral neuropathy panels except for maybe one.

Best wishes,

Sheltiemom
(maybe the newest member, but probably the oldest)