Lyme Update
 

While I don't read or post that often anymore, I still maintain an interest in the group, and maintain the Lizajane.org lab sheets, which are getting about 15 downloads a day--not bad!

So here's the update. I've been on antibiotics since February for lyme. I began feelnig much better in April and since April I have felt more well than I have felt in a decade. It's quite a marvel.

First I was on doxycycline, but as the sun came out and I began to react we switched high dose Amoxicillin---1Gm three times a day. I continue to do well on this, and will be on it until September, when I will be started on pulsed dose Flagyl, to hit the cyst form of the bacteria.

I believe my neuropathy symptoms are improving slowly over time. I can't say for sure, but they are definitely not worse. I am able to walk longer distances, and when I stop, it is NEVER because my feet are hurting. There are occasions when I get diffuse small fiber symptoms--like a prickly itch all over my skin, but these seem to go away quickly.

I continue to urge people with idiopathic axonal or small fiber disease to get tested for lyme at one of the labs approved by ilads, the lyme advocacy group of doctors. I still urge people to NOT trust routine testing.

There is a new documentary out about the underdiagnosis of lyme. It's called Under Our Skin, and can be bought for a donation from its website. There's been some publicity on this on TV, and I can't recommend this movie highly enough.

3 1/2 months of feeling relatively well. That's more than I've had in the last 15 years.

Good luck to all....

I'm so happy that you are feeling better and I hope it contnues and even gets better. Thanks always for your help.

Flagyl
 

Hi LJ - good to hear anti-b's are helping!

Just heads up on the flagyl - as a neuro-toxin its pretty brutual to the PN!!!!!! Be careful!!:eek:

update/flagyl/lyme
 

First, I want to tell you all that my neuropathy has definitely continued to improve with continuing antibiotics for lyme. I am also just generally more "well". I've been able to get a cold, and it not become a sinus infection, and I'm able to walk much greater distances, up to 3 miles at a pretty good clip. The main limit on my walking is back pain, from a fusion in 2006 which never healed. Still, 3 miles makes me happy.

Also, for those of you who commented on Flagyl...this will not be an easy decision to make. I'm still on Amoxicillin, 1500 mg three times a day, zithromax, 600 mg/day, and Diflucan (I don't rememeber the dose). But final treatment of the lyme bug requires a drug which can kill a specific life stage of the bacteria, and flagyl is the one drug known to be able to do that. My doctor has increased my supplements--putting me back on lipoic acid. He wants maximum improvement of the neuropathy before trying Flagyl. If we do it, I think he will continue to monitor me closely, as he has been.

In terms of supplements: fish oil, acetyl-L-carnitine, N-A-C, Icaps antioxidants, turmeric, 5HTP, DHEA, R lipoic acid, Quercetin (CoQ10), occasional vit B12, Calcium and Vit D3. I do believe they all help my nerves to regenerate.

So again, everybody: if you're PN is undiagnosed, or you are thought to have some sort of antibody negative immune disease, please ask your doctor to have your blood sent to a lab specializing in tick-borne diseases. Igenex was the lab to make my diagnosis, after six negative tests.

Also, if it seems you may have lyme clinically, by history, and your blood tests are negative, you ought to stil try treatment. The reason is that the antibody tests become negative with time. I was lucky enough to be in an acute flare when tested, so my acute antibody levels were high; but the antibodies that go up in chronic disease were negative! This turned out to be because my body has stopped making those antibodies (IgG) altogether. I lost my antibody response to all vaccines, for instance. This happens to lymers.

The diagnosis is as much by history and exam as by lab.

Just thought a happy update was due, along with a reminder about this disease that is way under-diagnosed and causes such havoc.

Good to hear from you about tall this--
 

--and I'm glad that the doctor working with you has enough sense to try neuroprotective supplementation prior to any heavy antibiotic regimen. (Finally someone who doesn't think nutrition is irrelevant.)

discouraging update
 

After becoming a new person around April, 2009, I remained this new person, adding strengths and losing symptoms until this February. By January, for instance, I was able to walk 4 miles, was making great progress weight-training, and was almost symptom-free of neuropathy. I say almost, because not all nerves normalized as I'd like, and there were still GI issues. But basically, my feet and hands felt normal, my tongue--which had plagued me--and my balance was quite normal.

Then I started getting tired at night, earlier, and with more of a melt-down sort of feeling. This has gradually worsened, and I am now in a melt-down sort of state way too much. My doctor has stopped antibiotics for a month's vacation from them, and put me on diflucan for a month, for any yeast which have overgrown. So during this month off, I'm just relying on my supplements and old support strategies to get by. It's quite disheartening. It seems there's no real data on how to proceed with such long-term lyme, so a vacation from drugs is just as good as switching at this point, minus the toxicty. There is nothing used for chronic lyme which does not have some neurotoxic issues: Cipro, flagyl, and such. That's a problem. We were hoping that my nerves were going to be healed enough to be able to gingerly try one of these drugs, in the hopes of knocking out the cyst-form of lyme which lives inside the nerve cells.

Things are still not as bad as before treatment. My balance is okay, and my stamina is generally better. But it's not great. I'm quite tired, and, for instance, today, a gorgeous Saturday, I just went back to bed int he afternoon for a 3 hour nap, after 10 hours sleep last night. I'm not feeling up to going out very much, and hanging out in the house, "nesting", feels about right.

It's discouraging. My doctor tells me, as do others, that I was the most dramatic "cure" they'd seen, so this is not unexpected to them. Apparently, things are rocky on the road back from lyme.

I still highly recommend that anyone with the diagnosis of idiopathic lyme get their blood sent to Igenex. You can arrange it directly with the lab, without your own doctor wanting it, I believe. They are quite helpful. It's a great lab, and no way does everybody come back positive. That's just a lie. They're very accurate.

Oh, it's the co-infections with lyme that are the real problem. Seems a tick that is infected with lyme is BOUND to be infected with other illnesses. So I'm infected with ehrlichiosis and bartonella in addition to lyme. That makes it all harder.

LizaJane,
Its great to hear that things are going better for you.

woops
 

Stagger, I think you missed the point; they're not going so well just now. But they were, and I hope they will be again soon.

I was encouraged by your progress? But, don't let
 

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 :hug::hug::hug:'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.:o

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

update
 

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.

Another Update
 

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)

One of the main carriers of bartonella are CATS.

http://www.manhattancats.com/Article...bartonella.htm

Well, then given the number of cats I had and the number of sick ones I cared for....likely add that to my list.

I don't have any kitties now....hubby has been allergic his entire life, and I finally figured he needed a break. When my grand little lady died at age 17, that was it. I still have my Labs....uff dah! Three elephants in my house resulting in my swiffing way too much.

Let's not even go where my chickens could take me.:eek:

bartonella/cats/lyme ticks
 

The bartonella one gets from the xithes (or something like that) tick, is the same family as cat scratch fever from cats, but different. It isn't generally tested for. There are many families of bartonella, and people bitten by ticks get a different on from people scratched from cats. If only life were simpler.

But LLMDs (lyme literate MDs) think that bartonella causes more cns symptoms (fogginess, word problems) than the lyme itself. Also neuropsych symptoms--depression, irritabilit..

Here are some youtubes, on bartonella, and on life with lyme and its co-infections.


http://www.youtube.com/watch?v=CVeXV...eature=related


http://www.youtube.com/watch?v=UC7ky...eature=related

http://www.youtube.com/watch?v=uOOX0lJYnKY

Lyme
 

LizaJane,

If I was scared before I read this:( I am now well past and beyond in yet another world.

In Nov my Ophtalmologist ordered blood work more then I knew I had in me and the one thing that stood out was a positive for Lyme,:cool: but he brushed it off as it was soooooooo low... later in Feb after leaving him ( another story) I had a never conduction study done and I past with flying colors> his reply was you should look into why you had antibodies for Lyme> So off I went and the next blood work came back clear of any antibodies.

I just got off the phone ealier today from my doctor at the Cleveland Clinic ( won't be going back there anytime soon:confused:) with the results of my QSART test which was normal. He suggested I return to the Clinic for Behavoir modifaction.. don't you just love B J Skinner.. I need to run not walk to my doctor!

I would like to ask about the cysts, I have multiple noduals or fatty tissue lumps or what ever:confused: on my left arm when I have ask any doctor they all seem to brush them off trying first to get to the root of the issue?
They now (new this week) are pushing down and compressing onto nerves and my pinky down the palm of my hand and up my thumb are numb (numbness is nothing new but being caused by them is).

Sue Bee

for Sue Bee
 

There is a very good Lyme support site which can refer you to an LLMD near where you live. From there your treatment should improve. If you've had a positive Lyme test from a regular lab, it is really imperative that you get into the hands of a good lyme doc, as there are so many co-infections that the same tick carries that must be looked for.

I think if you find a good lyme doc, you will be on a better road. There is a road to healing with Lyme.

http://www.lymenet.org/SupportGroups/

If you ask about how to find a doctor you will be directed to the correct links. ILADS i think also links to doctors who belong.

Good luck, it's less scarey to have a known than an unknown.

I believe when the word 'cyst' is used in relation to Borrelia it is referring to a part of the life cycle and the cyst is a microscopic organism, which encases itself as to be immune to most antibiotics. There are several forms of the organism, spirochete, cyst, plasmids.

Yes, Cycleops
 

The lyme bug can curl up into a cyst form, with a waxy type of coating, which lives in nerve cells. It doesn't do much damage there, but it sits there and waits for the right situation to come out and multiple and do its thing. Substances like steroids send it into hiding in cyst form. Flagyl is one of the few medications good against this form, but there are others. They all have some difficulties in dealing with, and that's why some doctors feel that the disease is never totally licked, because you never get all the cysts. I believe my doctors think I will always have some cysts, and what we know that's helpful, is that the bugs die off with amoxicillin when they come out, so that if they come out again, we can give them a good hit!

Thanks, LJ, I think sometimes people get confused and think that the Lyme cysts are actual cysts that one can see with the naked eye....Cysts that you can see and feel are likely due to something else and need to be examined.

Lizajane....I can't remember....Did you have IVIG?

You had asked the name of the Doctor I saw at the Cleveland Clinic:Thomas E Gretter, Neurology & and Qingping Yoa (really loved him he was so cute and charming:hug:) Rheumatology.
Doc Gretter was the one who thinks all I need is behavoir Modifaction class?:confused:
I am waiting now for the skin bio test at the University of Rochester. lesss traffic!:o

Sue Bee