Stopped Zithromax after four months and too many nighmares, depressive episodes, paranoia, etc. Things got a little better, but now, at the end of two abx free weeks... symptoms are coming back: chest aches (lymph), sore throat, knot in throat when swallowing, tremoring tongue, spacey vision, fatigue...
I went to my LLMD to follow up and ask the next step. He said I could stay off abx until after 1/25 when I go for an MRI... if I wanted to. I asked what he thought was going on and whether I should have some bloodwork done.
He said that bloodwork is too inconclusive. I asked about co-infection treatment since my 4 months of Rocephin and 4 months of zith aren't stopping the march of the spirochetes. He said co-infection diagnosis could be inaccurate.
I said, "Well I've gotta try something." He said okay take zithro and mepron.... if you want. I said, but I was having a hard time with zithro. He said, okay, try doxy... if you want.
I said, "Wait a minute, aren't you supposed to tell me what to take? Are we just taking stabs at this blindly?"
He said, "Well, we've gone slow since you are sensitive. And you feel bad whether or not we treat."
I started getting panicky, like... is he giving up on me? What's all this "...if you want..." stuff? And, I asked whether he thought there were other things I needed to rule out. He answered, "That is always a possibility..." It's not like I haven't seen a million specialists.
I told him I didn't want to stop treatment and wind up blind or with MS. He said I should sleep on it and call to tell him what choice I wanted to make.
This visit was zen without the calm. I also think that psychotropic drugs are in order, although, I do really poorly on those too.
I feel hopeless and completely unsure of myself. I thought he was the right doctor (LLMD), but I'm thoroughly baffled by this "don't know what you've got so treat yourself for whatever you think you have" approach.
Am I nuts?
wiserforit
Posts: 508 | From Banks of the Hudson | Registered: Jul 2006
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that has alsways been the difficulty with lyme-multiple symptomolgy, unreliable tests, etc
i too are extremely sensitive to any antibiotic. to me that means my spirochete load is pretty high. i'm only on 50mg zithro every other day-waiting for the hrxing to start
it is hard to be patient. we all want a quick fix-after all we are americans-
i'm not sure what is going on with your duck. he may be just as frustrated as you. but he should be more decisive and give direction. call him-maybe he has had time to think about it also. pin him down for a game plan. not all blood tests are inconclusive.
what tests have you had? maybe retesting from one of the labs that are more precise. my duck uses igenex-course i live in montana-i was recently tested for babesia-negative, but because i am having such a hard time with zithro,forget rocephin, he thought later i need to be treated for my cpn and probably one of the other co-infections
my duck has lyme and is really in tune with all the possibilitis.
call your duck and insist on a plan
Posts: 76 | From Kalispell, Montana | Registered: Dec 2006
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
No,you are not nuts. I don't know what others think, but that would've frustrated the hell out of me.
At this point, you want to put your trust in your caregiver. You need them to have strength and a backbone. It does little to your confidence when they are and shifting sand.
What are your other options?
As far as gowing "slow" on the antibiotics, that's not a bad idea. My daughter had to back off a bit because we couldn't keep up with the side affects. Slow and steady still wins the race. It's better than doing nothing.
Take a break from antibiotics and work on building your strength and immune system. Detox, detox and sweat a lot. It's a slow growing bacteria, the zith stays around for a while, so you won't lose much ground.
Looking forward to other wise opinions on this.
Posts: 2903 | From AZ | Registered: Feb 2006
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i believe i got my lyme in az. lived there 30 yrs before moving to montana. montana is just where my symptoms started
Posts: 76 | From Kalispell, Montana | Registered: Dec 2006
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Whodathunk...huh? Arizona. We don't have lyme in AZ?!
I'll PM you and we can talk.
Posts: 2903 | From AZ | Registered: Feb 2006
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
I'm another of those who didn't get lyme in AZ Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
Sounds to me like your Dr is being very good at trying to please you. It's hard for him to be decisive on drug protocols when his patient is so sensitive to abx. He's just being honest. Treatment is a crapshoot. There are no hard lines...just gudelines. There is nothing wrong with the patient having a say so in their Tx. That's the way that I prefer it.
He said, "Well, we've gone slow since you are sensitive. And you feel bad whether or not we treat." It sound slike this is true from what you said?
-------------------- You're only a failure when you stop trying. Posts: 945 | From U.S | Registered: Oct 2004
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Thanks for the replies on what feels like a swirling dark day.
Kelmo, I appreciate the regroup/detox and build up the immune system advice. It works with New Years resolutions too! I am actually going to try something wacky and dabble with the Perricone Weight Loss diet. The foundation of the diet is supposedly based on anti-inflammation... lots of salmon and veggies. I'm a little cautious about the supplements. Weight loss would be a very good thing at this rubbery stage in my body's existance!
Marsy, yes... it is Dr. C, whom I love dearly, but who is, at present, very non-committal with directives. Have you met him?
Micul, I agree also that my LLMD is trying to make the best of the bad situation of my sensitivities. Nonetheless, I'd like the chance to try/explore the more routine approaches before ruling them out. I've ridden the herxheimer rollercoaster for four months each on two different drugs; I'll gird myself for battle to do more, but I need direction... with a sprinkling of hope or confidence -- either topping would do.
Been sick for eight years, diagnosed 18 months ago, treated for about 9 months. Want to believe in getting better.
Best to all of you. Happy New Year and here's to kicking spirochete butt!
wiserforit
Posts: 508 | From Banks of the Hudson | Registered: Jul 2006
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Thanks for the replies on what feels like a swirling dark day.
Kelmo, I appreciate the regroup/detox and build up the immune system advice. It works with New Years resolutions too! I am actually going to try something wacky and dabble with the Perricone Weight Loss diet. The foundation of the diet is supposedly based on anti-inflammation... lots of salmon and veggies. I'm a little cautious about the supplements. Weight loss would be a very good thing at this rubbery stage in my body's existance!
Marsy, yes... it is Dr. C, whom I love dearly, but who is, at present, very non-committal with directives. Have you met him?
Micul, I agree also that my LLMD is trying to make the best of the bad situation of my sensitivities. Nonetheless, I'd like the chance to try/explore the more routine approaches before ruling them out. I've ridden the herxheimer rollercoaster for four months each on two different drugs; I'll gird myself for battle to do more, but I need direction... with a sprinkling of hope or confidence -- either topping would do.
Been sick for eight years, diagnosed 18 months ago, treated for about 9 months. Want to believe in getting better.
Best to all of you. Happy New Year and here's to kicking spirochete butt!
wiserforit
Posts: 508 | From Banks of the Hudson | Registered: Jul 2006
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posted
That would frustrate me, too -- I do like to have some say in my treatment, but I definitely rely on my LLNP to be the one to lay out the best possible options, and then I choose from there! After all, that is why I see a specialist!!!
Sounds like zith was doing quite a number on you -- is it possible you could pulse it?
Doxy made me herx like crazy! -- much worse than zith -- but everyone is different that way, so you might tolerate it very well.
As for the psychotropic drugs, cymbalta has saved me during treatment. I was put on it for pain (which it didn't help much) but it has made the neuro-psych stuff much more bearable!
As for other conditions, if you are symptomatic for coinfections, my personal feeling is that it is better to treat than not to treat, assuming you can swing it financially and tolerate it physically.
I personally believe that a thorough screening for the usual-suspect viruses is not a bad idea, too --- I tested incredibly high for EBV, and subsequent valtrex has really saved me, fatigue-wise.
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
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posted
Yes, I've met him. He is a wonderful epidemiologist/researcher and probably a great doctor if you only have lyme.
I have yet to talk to anybody that he has tested or treated for co-infections. I find this puzzling that someone of his caliber could do all this research and then deny his patients c-infection tests and/or treatment.
Someone who has been down this road, if the treatment is not working isn't this one of the first places an LLMD should look?
From all my reading here on LymeNet it seems that there were/are quite a few people who treated lyme for a long time and did not see any significant improvement until their co-infections were addressed. (It's been drilled into my head, took a while)
Maybe it's time to make a move or you could get tested elsewhere and continue treatment. If you present a positive test Im sure he would treat you then right?
-------
Posts: 465 | From New York, NY | Registered: Aug 2005
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posted
If you had trouble with zithro you will want to be careful with Mepron and Malarone: I had scary psychological (visual hallucinations, hearing a voice) reactions to both as well as intense nightmares and then felt depressed (hmm, wonder why?). I did manage to get in 4weeks of Mepron; later I had to stop Malarone after 3 weeks and LLMD told me he didn't want me to take either again. Hence, he had me on Doxy and Tindamax, said both have an anti-malarial effect and both go to the brain. I have tried Minocin a few trimes - just don't like the way I feel on it; feel pretty good on the Doxy-Tinda combo, despite occasional nausea.
ESG, into 3d year of 'intensive' Lyme treatment and now able to swim almost every day!
Posts: 424 | From Connecticut, USA | Registered: Nov 2003
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posted
Your Dr. sounds like a great guy, willing to put his license on the line and give you a say in your treatment. As far a treatment options, What do you expect him to do when he has tried everything in the drawer on you; At this point your guess is as good as his. If he had a cure I'm sure he would be thrilled to give it to you. If he were my dr. I'd send him a thank you note .
Posts: 789 | From CT, | Registered: Jun 2006
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Fact is, we've tried two abx over a 9 months period -- not everything in the drawer. What's in the drawer is what I'd like to know more about. I'm cautious due to sensitivities, but willing to dive in and experiment.
Also, for those of us newbies not well-versed in treatment options -- there is the expectation that the doctor would discuss possibilities including a range of co-infection ideas. Especially when prior testing from Igenex shows positive for co's.
sorry if that wasn't clear... I read a lot on this site and try to discuss it with my LLMD to sort out options. His protocols appear to be different than many others. It can be confusing to tease this all out.
It is also scarey to think that I'm supposed to dictate treatment options of which I don't fully understand. I'm cautious due to sensitivities, but willing to dive in and experiment.
Glad you feel in control of your treatment. You must have been at it longer than I have.
wiserforit
Posts: 508 | From Banks of the Hudson | Registered: Jul 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey wise..
I reckon you didn't know it.. but you are a pig.
A Guinea pig!
So am I.. so are all the folks here.
You said..
"I said, "Wait a minute, aren't you supposed to tell me what to take? Are we just taking stabs at this blindly?"
If you hope to keep your sanity and travel a less bumpy road to recovery.. you first need to know that NO ONE..
NO ONE
NO ONE
NO ONE
Has all the answers.
Right now ALL of us here have 3 choices.
1. We can follow the IDSA guidelines.. which we know don't work. Of course THEIR studies say their protocol works.. but hey.. does anyone want to be limited to 2-3 weeks of doxy.. and get that only IF they have positive tests.. and IF they meet all the other assinine criteria they set up? Been there.. done that... and it don't work!
Or..
2. We can go to a LLMD and see what MIGHT be best for our individual situation and go with what works for us. Some things will help, some won't.. but we won't know until we try them. But it's nice to have that choice... and someone who is willing to be flexible and will stick their neck out to help knowing they could be shot at sunrise for doing it.
Or..
3. We can roll over and die... whining and complaining all the way.
Your choice.
Now.. this doctor PROBABLY saw your panic and the fact you were going nuts (they are trained to do that). That is why he suggested going home to think about it. I'd LOVE a doctor who allowed me to do that. For so many years it has been.. well.. take this and taht.. and like it.
Sooooooooooo.. since NO ONE NO ONE NO ONE has all the answers.. YOU.. and each patient here.. will need to be proactive in your own health care and will need to HELP the LLMD do what is best for you. You will need to educate your self.. and try things after really studying them. You will need to consider the several options he gave you.. research them.. and make a decission.
If you do.. and ONLY if you do.. you'll be wiserforit.
PS. I like the idea of sending him/her a thank you note. Without encouragement and support.. these few LLMD's can throw in the towel and go to work on a river boat... and I am SURE they would be MUCH happier and less stressed for it.
We are NOT good patients. We are a pain in the backside to say the least. And keep in mind.. for every 1/2 hour spent with a patient.. these docs have a minimum of two hours they work on your case doing things you will never know or be able to comprehend.
posted
...shall we create a post, "Have you thanked your doctor today?"
As far as the guinea pig analogy goes... with all the science we are trying to digest to help us educate ourselves, does that reduce most doctors to mere vehicles of prescription? We should see them as only as good as their prescription pad?
To imply that I'm whining and crying and less than proactive misses the point that we are all allowed to be confused by too little and too much information... muchless mixed messages. That questioning and confusion isn't the same as rolling over and dying muchless cancelling out the efficacy of a doctor.
and so the search goes on...
wiserforit (tori)
Posts: 508 | From Banks of the Hudson | Registered: Jul 2006
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mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
Morning wiser-
I hope today feels better.
Since we are all GPs in this, how about trying the doxy, at a low dose to start if you can. It will address several co-infections that you could have, whether tested for or not.
My llmd had me on tetra, similar to doxy, I tolerated it much better and it is also good for many cos. The cos that were addressed by tetra or doxy that I had are Rocky Mountain, Bart and mycoplasma. Biaxin is the next step up, still in the same family, but generally more tolerable but more expensive. I couldn't handle the after taste.
I also relapsed quickly after rocphin and zith and was panicky and SCARED.
Hey AZ folks, I'm kickin back out here near Phoenix! Sure beats working.
kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Enjoying our unseasonably warm weather? How is 73 in January treating you?
Wiser, I'm afraid I'm with you on your response to Tincup. When you are lymebrain dead, you sometimes need someone to take control.
I understand your frustration. On our first visit to our LLMD, I had never heard of Bartonella or any of the Lyme infections. Even when I worked my un-lymed brain over on behalf of my very ill daughter, it was still overwhelming information.
You have every right to vent, and I don't want you to feel judged or chastised for it. So, I think our purpose in our responses to him should be a bird's eye view. Take a step back and check out your options.
I think taking some time off is a good idea. Make a list of symptoms, medication side effects, and take them to your doctor next time you see him.
Don't throw in the towel on your doctor. Like others tried to tell you,(in ways I wish were less condescending) LLMD's are few and far between. Some are going to be better than others. He is really on your side, I can tell.
But, once you start feeling better, you can really do your homework and work with him/her. You don't have to send him a thank you note, I'm sure he is getting paid very well; I know mine is. They don't have to take the "usual and customary", and they have a long term patient.
If your GI is out of whack, someone on this website recommended the Siberian Pine Nut Oil. It has done wonders for my daughter. I took a stab and tried it. It has put her back on track with her antibiotics.
Until then, just rest. My daughter needed medication for anxiety and depression. With all that's going on the brain, that may help stabilize your thought process and help with clearer thinking.
Bring all this up with your LLMD, as well. Take care, I know you weren't being a "baby", you are ill. It's no fun.
posted
Indeed, we are all Guinea Pigs and no one has the answer - and that costs us a lot of time and money, plus all the overwhelming confusion & frustration. After 2 years of driving to NY state every month and being bombarded by meds in combos I could not tolerate & could hardly afford, I know how important it is to have an LLMD who listens to you as an individual, not as just yet another Lyme patient... once you are lucky enough to find a doc who will treat you for Lyme & co-infections! I was very sick for 8 years before I got to that step of being able to get to an LLMD. I now have a local doc willing to treat and the first thing he said was that I should not be a Guinea Pig ... and the 2d thing he said is "let's try this" and once again I was a Guinea Pig for what he believes in as 'the best' treatment - ARGH! Yesterday I was in tears over this latest experiment (a 3d attempt at trying Minocin) and today I have gone back to what I know works for me: Doxy and Tindamax. During these 3 years, it has always been that combo that worked best, but in between I kept being told to try this or that. However, I am grateful for any treatment and I always tried the new combo because you just never know. And I will never regret trying the various combos, because I learned so much. Unfortunately, as I said, this takes time and money, and when you are still very ill you need someone to tell you what to do, to get you started on feeling well enough to be able to think again. Looking back, I was first so grateful to be able to get to an LLMD, then so grateful for the meds, then I started to feel well enough to think about what was being done to me, then I felt well enough to do more research, then I felt well enough to stand up for myself and say this does not work & this does work, please listen to me: there were many steps involved and each one was the right one at the time. And always there is the fear of not being able to get that prescription someday!
ESG
Posts: 424 | From Connecticut, USA | Registered: Nov 2003
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posted
From what you've said it sounds like you never were tested thoroughly for the coinfections- or for that matter treated. I went for 3 years after being diagnosed with Lyme without being treated for babesia. Then a certain NY doctor finally took my case and did Igenex Babesia testing on me. The FSH came out positive and the IGM came out 1280. Very high! He said wow- my immune sytem must have been keeping it in check but I could never recover from the lyme if that wasn't addrressed.
AT that point I had many months of IV Rocephin and many oral meds for the Lyme. Unfortunately since it is a bad case and never was diagnosed quickly I have a hard battle to fight now.
You haev to be your own advocate. Read, read read. This is the best website to see what tohers have gone through. If you're not getting better and coinfections were never addressed they have to be!
Also, if you look at the ILADS guidleines- Zithromax is usually used in combo with something else. It is the kind of drug that works within the blood stream I believe whereas there are others that get deep into the tissues where the bacteria like to bury so to speak.
Most of the doctors that I have dealt with for both myself and my husband and my three kids believe 2 drugs at a time kill more bacteria- one within the blood stream and one within the tissues.
I know you have sensitives but you also have to realize herxing isn't pleasant. Try to make sure you drink lots of water (with lemon) and take lots of probiotics to help keep the digestive system going. I have gone through many herxs and I know they aren't pleasant. When you know your body is not itself just take a rest and get plenty of sleep.
I hope you can truly found out what in in your body. If you need any more help feel free to pm me.
Posts: 238 | From Bethlehem, PA | Registered: Oct 2004
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hello, dear Wiser.
Certain doctors are known for having kind of fixed treatment protocols. There's another rather famous doctor who seems to use Tetracycline only, and does not test for or treat co-infections.
I really don't know the science behind this logic. Clearly these are both brilliant doctors so there must be some rationale. However, their views are not shared by the majority of LLMD's.
If it were ME, I would test for coinfections. It sounds as if your doctor would oblige. My own progress was extremely halting because I did not do so; one year into treatment I finally did and tested positive for babesia WA1. I've since come to believe it responsible for more ills than b. burgdorferi. Treating it made all the difference.
Our doctors unwittingly flatter us by assuming we stay current and read all the lyme research. My own LLMD will say stuff like, "You probably already read that hamster study on blah blah blah, right?"
If you've only done Zith and Rocephin so far, you've barely scratched the surface.
How about Biaxin/Plaquenil/Tindamax?
Minocycline has tremendous brain penetration but you might have real trouble tolerating it.
Can you get coverage for Bicillin shots? People seem to have great improvement on those.
I do wish your doc had a ready plan for you and wish there were more hard answers. However, with your sensitivity issues, he might just be reluctant from a "do no harm" perspective, and may just be looking for more input from you as to what you're willing to try next, since all of these treatments are sure to kick your butt.
If pressed, most of our LLMDs would similarly admit they are basically taking "stabs" at treatment as we move from one drug regimen to another.
My non-medical advice would be to test for co-infections. Switch drugs. Consider treating babesia regardless of test results.
I really wish you luck and hope you are making progress soon.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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This doctor did not offer co-infection testing as he believes the testing is inaccurate. Alot of Doctors would agree on this.
You presented with previous positive co-infection testing from IgeneX.
What if you tell him you slept on it and would like to treat the positive co-infections next.
When he pulls that treatment out of the drawer and you get better then you can thank him.
If he is unwilling to treat these other TBD then it might be time to move on. Especially if you believe that your IgeneX test was accurate.
It is a hard place to be, compounded by the fact that you really like your doctor.
Posts: 465 | From New York, NY | Registered: Aug 2005
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I've tried to PM everyone I could, but I may have missed someone along the way.
Please know that all of your words of wisdom have not gone unheard! I cherish your willingness to write replies and share information.
I have a new game plan wrought from all of your thoughtful ideas that includes taking doxy for now, seeking advice from a new LLMD while not throwing in the towel on my current LLMD, and making 2007 the Year of Operation Co-Infection. I hope to find all critters and take no captives...wish it were so simple...
That said, I am totally chicken, and drink the bravery of your collective words like a cactus in the desert! But my intentions are true...
Love and blessings,
wiserforit
Posts: 508 | From Banks of the Hudson | Registered: Jul 2006
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
I think, no I know, it's very easy to get frustrated, but each person is different. Each response to ABX is an individual response, and a lot cannot be predicted. Dr. C is a great doctor, imho, and I think his responses were to help you decide what meds work best for you. It's hard for any LLMD to definitely say you need to take this ABX and you will be better. It just doesn't work that way.
Just try to stay optimistic, and realize that Dr. C is trying to help you.
Best wishes.
Posts: 1366 | From Southeast | Registered: Sep 2005
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Regardless of who it is, I understand being frustrated and anxious.
I have been on abx for 15 months, and I have worked up from small doses of abx and herxed like hell, I am now on Primaxin, Zith, Plaquenil, Malarone, Nystatin, Actigall and have herxed like hell. I have felt worse than I started for 15 months, I feel like I got sucked into the Dark Side, only I wasn't a Sith.
Today for the first time I realized I was over some hump. My quality of life is finally starting to improve. But the thing is, it was a huge gamble--what medicine to take-- what protocol to follow--what Dr. to see. In the end, it is up to me to make the call on how to save my life.
gambler
Posts: 243 | From chicago | Registered: Dec 2005
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Gambler..
You said it all.. real good! And I am so VERY happy for you!!
You said.. "Today for the first time I realized I was over some hump. My quality of life is finally starting to improve. But the thing is, it was a huge gamble--what medicine to take-- what protocol to follow--what Dr. to see. In the end, it is up to me to make the call on how to save my life."
That is wonderful news! I'm dancing for you!!!
BUT.. don't.. and remember this.. don't be surprised if all of a suddden you have a bad day. I think this was the thing that freaked me out the most. I kept asking myself... WHY do I have good days.. then suddenly a bad one?
It sucked! But.. now I know..
It is normal!!!
At first this will happen. You may get one good day.. and 2 weeks of bad. But then another good one.
Then as time goes by.. and it may seem oh so slow.. you will notice you are having more good days per month than bad.
I just wanted you to know that so it wouldn't upset you as it did me and many others by not being aware this could happen.
posted
I don't know if you'll be checking back on this thread, but thanks Tincup for the kind words, and the warning.
I was actually walking home today marvelling that my body didn't feel like it was lacking shock absorbers, and my head didn't jar with each step, and then I reminded myself that this wasn't going to last.
Sure enough, tonight I leaned over and the band of pain tightened like a vice around my head.
But, as opposed to before, now when I think of my future I can see myself in it, instead of someone who looks like me on autopilot.
Wiseforit, my symptoms got so much worse after taking abx, I never had myoclonus before taking abx, or anxiety, or full on craziness, or stabbing pain, or daytime soaking sweats. And if I didn't have an infection in my brain, I am sure I would have stopped, any sane person would have. But I am no longer playing with a full deck.
When you are unsure, frustrated, tired and you wonder if you should just fold--you need to bluff yourself. Because when you have Lyme, a bacteria already put you...all in.
Good luck with your new LLMD, I think it will really help you to talk to another Dr. It will give you more confidence in whatever you choose to do.
gambler
Posts: 243 | From chicago | Registered: Dec 2005
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