sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
This is a 360 degree huge turn of events for me. But at my last LLMD visit, it came up that my LD symptoms were triggered when I started taking an antidepressant, literally within a day or 2 of starting them I was extremely ill. I then spent 2 years getting a diagnosis of LD.
Anyway, after discussing how my illness started my LLMD thinks I may not have LD, but instead I may have an autoimmune illness triggered by the drug. It is a rare accurance that the autoimmune reaction will continue after discontinuing the drug, but it does happen. I took the antidepressant for 3 months and that was 3 years ago.
Anyway, I started taking steroids,(but only for 3 weeks). I am weaning off of them and on to plaquenil. Plaquenil is an anti-malarial drug also used to treat autoimmune illnesses.
Another piece of the puzzle is that during a whole year of treating LD, the only time I felt the least bit better was while taking Malarone, also an anti-malarial.
We haven't ruled out LD altogether; but my doctor is leaning toward the autoimmune reaction and it does make sense to me.
According to my doc, when I started the antidepressant it was like toxic to me and my body started making antibodies against it. Once I withdrew the drug, my body should have stopped making the antibodies, but didn't. They then started attacking my own body.
It has taken me a couple of weeks to really absorb all of this new information; but I really hope we are on the right track.
I remember when I first got sick, my first instinct was that the antidepressant did something horrible to my body; but none of the ducks I went to believed in that theory. So eventually I started looking at other options, which is when I discovered LD. All of my symptoms were textbook LD symptoms. But of course these symptoms also fit perfect with autoimmune symptoms.
Anyway, just thought this might be interesting to you guys. Maybe someone has some insight into this.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Could you share WHICH drug so we'll all be forewarned?
Are you feeling better??
I hope for your sake that your dr is correct.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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sutherngrl
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Member # 16270
posted
My WB, done by Labcorp, had positive band 41 only.
The antidepressant I took was Imipramine. It is one of the older ones. Antidepressants always make me feel bad, but this one was the worst. I had only tried them a few times prior to this.
I actually have noticed some slight improvement but not enough to feel complete confidence yet.
Not sure if this diagnosis will be any better, since it could be something I have for the rest of my life. Doc says there is no way to predict the outcome. I could get better, get worse or stay the same. The hope is that at least with medication I might feel better or possibly make it go away. Just figuring out what is wrong would be a plus.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Leelee
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Member # 19112
posted
Oh, sutherngirl, that is a lot for you to have to take in! I don't know if this is good or not-so-good news in your opinion. Certainly the best would be that you were healed from whatever caused your troubles.
I am really sorry you have struggled so long. I hope your new treatment plan and diagnosis make you healthy.
All the best.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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sutherngrl
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Member # 16270
posted
Leelee, I don't think I have figured that part out yet. I think since not much is documented in cases like this and since my doctor can't predict what the outcome might be that the news is not so good. But LD wasn't good either.
I guess just hoping for the best and learning to take one day at a time is the best way to live in any situation. And that is what I am trying to do.
We still haven't completely dismissed LD from the scenario either. Both of these illnesses are mostly based on medical history, symptoms and reactions to treatment. The outcome remains to be seen. So please don't throw me overboard yet!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Alv
Unregistered
posted
suthergirl ...you might as well have the mistery bug ( blo ) protozoa type that has reached its stage in the brain .I reacted the same way as you when I was given antidepresant.
2Years later I was numb.Read please my lasts post...I hope that can be helpful.Please list all your symtmoms...
Like , back pain , fatigu , muscle pain , floatares( yes or not) in the eys..dizynes....TMJ , foot pain , tired all the time...sleepy ...etc...I would compare them with mines.....
I will try to offer from my own eksperience...I have had THEM ALL ...and now DEALING with the stages of this BLO that is FINALLY showing alone and needs to be treated with MALARONE bactrim , azithr and artemisin.....because you respond only to antimalarial drugs...
I do not buy anymore the autoimune RESPOND...ALL I can say the disease has made enought damage to interupt my autonomic nervous system due to the fact that has reached his cycle and the stage in my brain has been long enought to create this hevock....
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posted
I took imipramine for years. But I was sick way before that.
Thanks for the information!
I'm still worried for you.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Alv, fatigue was the major reason I had to quit my job. Also plenty of pain, achy type and migrating pains, and yes on the foot pain and heels. Also neck pain, eye issues and dizziness. Plenty of tingling and burning sensations, muscle twitches, involuntary movements, and insomnia. Can't think of all my symptoms right now.
I definetly feel the brain is being affected. Lots of anxiety, and not just regular anxiety. I have always called it weird anxiety.
I hope that all of this may somehow prove helpful in solving why many of us can't get well. Maybe there is some kind of autoimmune connection to LD.
Somewhere out there are the answers!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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You said: "My WB, done by Labcorp, had positive band 41 only."
===
IGENEX is the most reliable lab to test lyme. It seems odd that your doctor did not know that. Not all the other labs even test all the important bands. Labcorp does not have the best reputation.
This could still be lyme. Can you be re-evaluated with another LLMD and use another lab so that you have the best testing?
-----
First Question: Is your LLMD a member of ILADS? Has he read all the works by ILADS authors and gone to some of the ILADS seminars?
-----
Until all chronic stealth infections are ruled out, taking steroids can be very dangerous. And, it could still be lyme, too.
I am very alarmed by the steroid Rx from your doctor. If the anxiety is increased with steroids, that is a HUGE sign that infections are present. The other symptoms, too, are frequent with infections.
Whatever you decide, I hope this all works out well for you but I'd feel better if you had a doctor who knew all about all the stealth infections in Timaca's thread below.
A lot of doctors will take the easy way out and say this is autoimmune when it's just the stealth nature of very sophisticated bacteria, protozoa or viruses (or even fungus).
As well, if certain drugs are toxic to you, you likely have elevated porphyrins. Did you have good liver support to address the toxic reactions.
What is your liver support NOW? It should be very specific as many of the symptoms can also be from a dysfunctional liver (as well as adrenal system that has been attacked by lyme or other infections).
Good luck. I hope you find what you need to soon see progress.
===========
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" -- (author's details at link)
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
- Full article at link above, containing MUCH more detailed information.
Integrated in vitro analysis for the in vivo prediction of cytochrome P450-mediated drug-drug interactions.
Excerpt:
. . .
Integrating inhibition and reaction phenotyping data from automated rP450 screens have shown applicability to predict the occurrence and degree of in vivo drug-drug interactions, and
*** such data may identify the clinical consequences for candidate drugs as both "perpetrators" and "victims" of P450-mediated interactions.***
Major pathway of imipramine metabolism is catalyzed by cytochromes P- 450 1A2 and P-450 3A4 in human liver
Excerpt:
Caution might be advised in the clinical use of tricyclic antidepressants when drugs are also administered that induce or inhibit P-450s 3A4 and 1A2.
=======
Please be sure to go to the Porphyria thread posted above and read all about secondary porphyria symptoms and how for another chronic stealth infections similar to lyme, Cpn, porphryia goes hand in hand with the infection and precautions are vital.
So, too, many lyme patients have stressed liver function. Taking any drug that requires metabolization through the liver detox pathway C P-450 should be done with caution.
And, within that Cytochrome P-450 pathway, are other pathways, so it's pretty complex. -----
And, by the way, depression is often a symptom of poor absorption of nutrition, infection, stressed liver or weak adrenals - or other endocrine function. All that can go with lyme.
It's always best to treat the cause. Depression is, far too often, a waste basket diagnosis for which drugs can really stress the liver.
And, if your symptoms are related to a chronic stealth infection, the steroids can likely increase the depression, but after you've enjoyed some surge in energy - but then - there might be an adrenal crash when you come off steroids.
Be sure to come off them very slowly in tapered doses.
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I have the same questions as Keebler. Is your doctor an ILADS member?
The fact that you've had some improvement casts some doubt on the autoimmune diagnosis but I suppose autoimmune illnesses wax and wane.
Before accepting the diagnosis of autoimmune, I'd get an IgeneX WB and a fry labs smear.
Have you been tested for co-infections? If you've had a response to anti-malarial drugs then seems like you may have a protozoan infection, possibly the one ID'd by Fry labs or babesia.
My sister developed lupus while being treated for lyme. Lyme can cause autoimmune illnesses and in fact I think that many of the so called "autoimmune" illnesses are actually infections.
I'm with tutu, I'm worried about you. Wishing you the best in solving this mystery.
Terry I'm not a doctor
Posts: 6286 | From Oregon | Registered: Jan 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
TESTING
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM."
posted
I have a similar thing happening to me too. My doctor thinks now I was orginally infected with a virus and not Lyme.
I have been on abx for over two years with little improvement. My WB only had a 41 +++.
I was recently tested for many virus's and all the tests were negative. I was never tested when I first became sick.
My symptoms too were all on the Lyme list but also on the chronic fatigue list. I even was seeing a well known LLMD in NY who honestly has no idea what to do with me.
So my doctor here has put me on an anti viral to see if I have any kind of response. I was actually beginning to wonder about my Lyme diagnosis too. I still am very confused as what to think but since I have had no luck with abx I need to move on.
Fatigue/exhaustion is my worse symptom still after 4 years..
Posts: 343 | From North Carolina | Registered: Oct 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Have you been tested for Cpn, HHV-6, mycoplasma . . . and all the other things at TIMACA's thread?
posted
I have been tested for all of those and more from my LLMD in NY. Everything was negative so they started treatment for Lyme..actually the only one I am not sure of is the VZV cause I have no idea what that is..
Posts: 343 | From North Carolina | Registered: Oct 2008
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sutherngrl
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Member # 16270
posted
My doc is ILADS and has researched LD for 30 years. He has not ruled out LD as of yet. I am actually glad that I have a Lyme doctor that is willing to think outside of the box.
I could have done an Igenex test, but since my doctor diagnosis LD mostly based on clinical we just never went there. It is something I will consider if I don't feel confidence in this new diagnosis.
As far as the steroids, I will only be on them for 3 weeks. I think it is worth pursuing the autoimmune thing, since I have not improved on any of the antibiotics I have tried. That would include Flagyl, zith, biaxin, and minocycline. And also since it just makes sense looking at the history of how this illness started.
The improvement on the anti-malarial, could also lean toward autoimmune, since they now use anti-malarials for autoimmune illnesses.
I am glad that I posted this, because it does bring up interesting considerations. Thanks for all the responses. Keep them coming!
My hope is that everyones experiences could add just a little more to the Lyme puzzle and possibly how many illness may interconnect.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
My first test had only 1 band unidentified in the
IgG region. IgeneX a year later got a positive IgM
and IgG neg. after taking homemade antibiotic for 3
months. All labs differ. Anything is possible with Lyme.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Good point, Pinelady.
I think it is vital to get to know EVERYTHING about the spirochete. It is a remarkable and intricate thing. Once we understand more about it, in all it's forms, shapes and modes of action, it's far easier to understand the task at hand.
The same goes with many of the other stealth infections.
posted
I always felt best on Plaquenil, Mepron, etc., too. In my case, I definitely have/had Lyme though. I think we all just have so many things going on, addressing Lyme alone just isn't enough. It's good you're looking at other things.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
Oh man.
I am one of the unlucky ones that have only had 41++ positive EVER. I doubt lyme SOOOOOOOOO often it's not even funny. The only other thing I have is that stupid 'mystery bug'. Sorry for calling it stupid, but it just upsets me when at one point in time I thought it was Bartonella and was SOOOOO extremely happy to have an answer and then to have that pulled out from under you... So yeah, I'm gonna call it stupid.
I have noticed times I felt better while on abx though and have noticed some symptoms that have gotten much better. Though overall, at this point, I am feeling WORSE. I think I'm having a flare. I have felt extrmely sick for about five days and just blah for an entire month.
I can't stand this anymore... augh.... so hard to push through this when I have no energy to. I feel like I barely have any life left in me to do so. I feel like I'm 120 years old...
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Hi.
That is interesting.
It may be worth doing an Igenex test....
I know it is expensive, but since you were thinking of doing
Other family members, there is actually a discount of 15%
For 3 or more family members.
I'm glad our LLMD does think out of the box.
It helps too that he has had Lyme.
So he knows this disease very well.
He is ILAD's affiliated as well.
I'm thinking I have the "mystery" bug too.
Too many months on mepron and malarone.
Definite relief of most symptoms, but never all gone...not yet.
I jokingly said the other day if I need two malarone a day for
Life just to keep from backsliding and just maintain where I am,
I'd be just fine with that.
Did you ever go see the other doc? The one at our support group?
Glad to see you are still kicking.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
I have doubted the Lyme diagnosis alot too. I know whatever I have is the direct result of some type of infection. Whether that is viral or bacterial I just don't know.
I had flu symptoms first and every thing else came afterwards. I had high liver enzymes, high sed rate, high albumin and high CRP. So doctor said it could have been viral or bacterial.
Since I have had no luck on abx I guess going on the anti viral is the thing to do for me at this point.
I still have my PICC in so who knows in the future. I just want to get well...
I have had a total of 3 WB and only ever had the 41+++ each time.
Posts: 343 | From North Carolina | Registered: Oct 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
I have had the same thing until I got bit again in 2 years after.
I HAVE the BLO BIG time but have had other COinfections that needed to put them in remission and now I am left with less but almost what you have.But the twitches are so random.
This is NOT LYME ( my lyme , muc fermentas , bart -still have some bugs in exstremeties , ehrlichia , brucella ) in remission.
My twitches are from the gramn negative bacteria and from BLO ( protozoa -babesia-malaria ) you name what you want...but I TEST NOW with this SYMTOMS only for the list that you mentioned above.
ALSO BACTRIM need to be in there NOT ONLY MALARONE and AZITHROMAXIN ...ARTEMISIA also has been constant showing positive all along... It has become like a food to me and have even used it up to 15 a day ...
I reach a level of feeling great and once I stop..the whole thing comes back ..but never used malarone...NOW THAT EVERYTHING is in controll ( I can tell by heart bart and the rest) ..this twitches are random in diferent parts ..BEFORE ( some twitches were from BART ) this type is like pinch type and itcheness all over ...
My daughter..treated bart henselae and now her lowed is so low..she stoped tested for every thing...
SHE TEST now for malarone , artemisin , bactrim but not MEPRON as in MY CASE.
She is positive on FRY bug also Seems to show some type of babs ( seems more towards wa-1 strain) .
She has been on HH , homepathics , rife , rifaqmpin , mino, plaquinil and clarythromycin....before...but not in Antiprotozoals...NOW she test on them and no other infections shows positive...
if you are better on that combo ...than add some bactrim ( ask the doctor ) to reinforce the combo and some ARTEMISIN .
ALSO have you thought about NEMATODES ( the ticks brings in parasitic infections as well ) .
So if you body is responding strongly that need this medication ...than YOU NEED to continue treatment to address the protozoas family but add the two I mentioned..as this is covering babs and fry bug in my case and my daughters..
Beilive it or not ...my son test the same thing..
after many treatment and his coinfecions...bart etc are showing very low...he is left with gram negative bacteria and protozoa babs bug.
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posted
This is very interesting to me because my 14 year old daughter had her first Lyme symptoms at age 4, new onset of incontinence.
After exhaustive testing she was put on Imiprimine. It cured the incontinence (a side effect of the antidepressant), but she went from very outgoing to extremely anxious. I had to be with her around the clock, not even her dad would do.
We stopped the drug after five months and the incontinence came back. She never returned to that happy-go-lucky, outgoing girl that she was. I berated myself and the doc for years, until she was dxd with Lyme in 12/07.
Imipramine is a scary drug. I feel confident that she and I have Lyme, but she isn't getting better and maybe that is a piece. Thanks for sharing.
-------------------- "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Anonymous Posts: 450 | From California | Registered: Feb 2008
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Michelle M
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Member # 7200
posted
It is very concerning that an LLMD would consider a LabCorp western blot definitive.
It is further concerning that even though he hasn't "ruled out" lyme, he would put you on a course of steroids.
If you only had band 41 on an IGeneX western blot, I'd be feeling better about your treatment.
I certainly don't believe that everyone has lyme disease.
But unless you present with a rash or other frank sign, it's pretty standard ILADS procedure to test with a good lab for not only lyme but coinfections. Have you tested for coinfections?
Posts: 3193 | From Northern California | Registered: Apr 2005
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
quote:If you only had band 41 on an IGeneX western blot, I'd be feeling better about your treatment.
Hey, comon!!!!!! I only had 41++ on IGeneX.... don't make me doubt more than I already do.... Geesh.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Just want to apologize for mistaking one poster for another.
I apologize for writing about an LLMD that I know nothing about.
So very sorry.
Forgive my Lyme brain lapse.
That being said, I hope you get to the bottom of your illness.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I am loving all the concern you guys. This is all a little scary; but I am very confident with my LLMD. He is only keeping me on steroids for 3 weeks and I have just added in the plaquenil.
When he says he hasn't ruled out Lyme, I think he is just being a little cautious; but he does lean more toward the autoimmune reaction and thus feels that it is imparitive to begin treatment for that right away. We can still go back to Lyme if things point in that direction.
My LLMD feels that if you have LD, that at some point in a years time, you would at least feel somewhat better on antibiotics, which I really haven't.
As far as researching autoimmune reaction to drugs.... there is just not much documented, since most people return to normal after the medication is withdrawn; which didn't happen in my case. I became ill within a day or 2 of starting the med with flu like symptoms, and then the pain and fatigue. My first instinct was that the medication did it. It seemed so obvious at the time; but ducks convinced me otherwise. It took me 2 years to find out about LD and to find a LLMD that doesn't just settle for Lyme each and every time.
Okay, I know I am repeating myself..... Sorry.
I do find all of this very intriguing though. We will just have to wait and see where this all leads.
Today was my 3rd day on plaquenil. I only have 6 more days on the steroids. Yes the steroids have me slightly more energized, but I still feel crappy, just not as crappy. Once I stop the steroids we will see what happens.
Thanks for all the responses. I really appreciate it, because this change is a little stressful for me. Thanks for all the support!
nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
I wish you the beest of luck Sutherngirl! I hope you both can find the solution to your illness.
I hate to throw more confusion into this mix, but I seem to recall talk here a while back of proton pump inhibitors having an effect against Lyme.
Imipramine (and some other anti-depressants) is a proton pump inhibitor, so if it does have an effect against Lyme, it is possible it could stir up symptoms by causing Herxing, which could come and go as Herxing can cycle.
And you could be feeling pretty crappy because a proton pump inhibitor alone might be just enough to cause Herxing, but not enough to really kill the Lyme rapidly enough to noticeably lower your overall load. I hope that makes some sense.
Does anyone else here recall more about this finding (proton pump inhibitors vs. Lyme), or have any further info? I think the science was that the Lyme uses a proton pump to flush out the antibiotic or your body's own immune system response, so the proton pump inhibitor makes it less resistant.
I believe some Doctors even prescribe a proton pump inhibitor with antibiotics to increase the Lyme-killing effects.
This sound familiar to anyone? I will try to research this more today.
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