My husband was recently diagnosed with possible MS. Here are the basics:
- 6 weeks ago, mild flu symptoms including low-grade fever and headache, which abated after about a week (no Dr. visit) - 1 week later, more flu symptoms, this time accompanied by vertigo. Went to Dr. who prescribed anti-vert and antibiotics for "secondary infection" - 2 weeks later, vertigo still present, Bell's palsy attack, hospitalized, put on steroids (2 weeks oral), antivirals, and more antibiotics (oral) - 1 week later, weakness in left leg (note that my hubby has had a herniated disk and sciatica on that same leg for about a year)
tests: - MRI of head and spine negative - Myelin specific protein in CSF negative - oligoclonal bands positive - Evoked response test normal - Lyme seropositive (cannot prove new infection since he had Lyme 2 years ago with typical rash, etc.) - Lyme PCR negative (but as we all know this doesn't rule out Lyme)
The Lyme specialist we saw yesterday wants to talk to a few other neurologists, then put him on 3 weeks of IV antibiotics. However, if his symptoms abate, how will we know if it's not just MS remitting? The original neuro who saw him in the hosptial after the Bell's palsy insists its MS based on the Lyme PCR being negative and the oligoclonal bands in his CSF, but I think he's nuts b/c anyone who does a little research or checking with other docs knows that neither is proof one way or another.
What to do? Should he start copaxone or other MS drugs, which the neuro wants to do? Some Lyme experts say this kind of immunotherapy can prove damaging if it's Lyme.
Obviously we want LYME... anyone else have similar story? Please be gentle, as I'm very scared. thanks in advance
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quote:Originally posted by LunasMom: The Lyme specialist we saw yesterday wants to talk to a few other neurologists, then put him on 3 weeks of IV antibiotics. However, if his symptoms abate, how will we know if it's not just MS remitting?
Do antibiotics work for MS?? I don't think so. So if he improves, then Lyme looks like the real deal. However, keep in mind that he will probably have a major herx [a worsening of symptoms] and that would also indicate lyme.
His story screams LYME to me, but I'm not a dr. Bells Palsy is a big indicator, as well as the flu-like illness, and on and on.
Look through these links. You will find plenty of info on MS/Lyme. You can also do a search here by clicking on the word "search" above on this page.
You also need to consider a Lyme Western Blot by Igenex labs. www.igenex.com
The meds for MS will make Lyme go deeper....from which he may never recover if it's lyme and not MS. The steroids he was already given probably made him worse also. Sorry to tell you that, but you need to know.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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SForsgren
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Get IGenex tested for co-infections and Lyme with Panel 5060. It may help shed some light.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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LunasMom
Unregistered
posted
Scott, can you explain a little more about "Lyme with panel 5060"?
Lymetoo, I had read that steroids can cause perm. damage if its Lyme. Our original neuro is a total you-know-what, and honestly we will end up reporting him regardless of eventual dx b/c of his innaccurate insistance that it's MS. Sigh. I guess we'll just hope for the best. Essentially, antibiotics have no effect on MS, but relapsing-remitting MS comes and goes, so if the symptoms go away, it could be b/c of the antiboitics helping with Lyme, OR it could be the MS remitting. Get it?
Michelle M
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Member # 7200
posted
Hello, Luna's Mom!
Boy, this is screaming "Lyme" to me too.
First, a history of Lyme. Sigh... And only 2 years ago. Relapses are so common that this would be the FIRST thing I'd suspect.
Second, oligoclonal bands can and do appear in Lyme, same as MS.
Bell's Palsy is a Lyme GIANT red flag.
Headache is a rare presenting MS symptom, but a MAJOR presenting symptom in Lyme, especially neuroborreliosis.
Good for you for doing your homework. Scary when you know more about it than the neuro, huh? For some funny neurologist stories and an idea how widespread the problem is, check out the thread in general support forum called "Are All Neurologists Goofy?" It's a keeper.
Many, many smart docs believe Lyme is at the root of MS.
I too had a possible MS diagnosis, with multiple brain lesions, shrieking headaches x2 yrs, abnormal evoked potentials, mildly abnormal spinal tap.
I found an LLMD, ignored my neurologist, tested highly positive for Lyme, and started treatment. In 7 months, I'm like a whole new person and getting better every day.
I'd trust the LLMD because remember -- the worst he can do is not help (and I'm betting he WILL help).
The worst the neuro can do is HURT -- a LOT if it's Lyme.
Definitely do the IGeneX testing - it's the best there is and your husband is worth it!
Come here often!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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Sorry you are in a scary place right now. Try to take it one day at a time.
I don't remember a bite, never had a rash - tested seronegative twice through Quest and LabCorp - the Quest test was through John's Hopkins Hospital...
Even the John's Hopkins doctor said he felt I had at least ehrlichia...which is a coinfection...
Went through IgeneX labs in CA - was positive IgMs and IgGs antibodies for Lyme....also Ehrlichia hme and hge which are different strains, and Babesia....
All the 15+ doctors I had seen in a six month period were ready to call it MS - I knew in my heart it wasn't...
Your husband was positive for Lyme...sounds much more like a relapse to me...he was probably undertreated.
Hang in there ok? And keep us posted...Just keep researching as much as you have the time and energy for and do not trust doctors ultimately...you have to do your research.
There is an LLMD in Connecticut that has done a lot of research into Lyme and MS. He has many patients that had been misdiagnosed that years later he treated for lyme disease and they improved and realized they had been misdiagnosed. I can't post his full name here but his initials are S.P.
Take care and wishes for some answers and healing for your husband....
-------------------- �Pride is concerned with who is right. Humility is concerned with what is right.� - Ezre Taft Benson Posts: 655 | From NC, Exit 88 on the Deer SuperHighway | Registered: Dec 2004
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
Panel 5060 is the panel at Igenex that contains a good set of starting tests for Lyme. I don't see the panel listed on their site but am pretty sure that was the #. An any event ....
You want to get tested for
Borrelia Ehrlichia Bartonella Babesia
Positive tests for any of these would help support a Lyme vs. MS diagnosis in my opinion.
I think the standard Western Blot for Bb and IgG/IgM testing for the others is a useful start.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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groovy2
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posted
Hi Mom
You say he had Lyme before-- explane more-- Bullseye bruse-Yes?- Tests?
what treatment was given? how long --what meds--how much- was medicine taken contenusily-
how much time passed from infection to start of treatment-
Include anything you can think of- all symptoms that have come and gone ect- did anything help--for how long--
Lyme can definatly come back if not treated long enough with correct abx-- also look into co infections Babs -bart ect.--Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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Sammi
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posted
Hi LunasMom, welcome to the board!
I have not had a chance to read the responses here yet, so I apologize if there is duplicate information.
When your husband had Lyme before, how long was he treated? Do you know what he was treated with? Was he tested for all the co-infections that ticks can transmsit: Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma? It may be that he was not treated long enough or aggressively enough initially. It is also possible he was re-infected.
As you know, no Lyme test is completely reliable. It is very important for your husband to see a knowledgeable doctor. Is the doctor you are seeing one who relies on PCR results to treat? From what I undersand, three weeks of IV treatment is not long enough so I wonder how kowledgeable this doctor is.
Many people who have Lyme were fist diagnosed with other diseases including Fibromyalgia, CFS, MS, ALS, and Lupus. Since your husband's symptoms can be attriubted to Lyme and co-infections and since he had Lyme before, I think it is very possible this is what is wrong. If you need doctor recommendations for your area, just let us know.
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Sammi
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The new criteria for diagnosing MS absolutely include either MRI lesions found on the brain or cervical spine. That would be a very unusual case of MS if there were no lesions on his MRIs.
Lesions can also be found on the MRI for various other reasons as well. Vasculitis, Lyme disease, and migraines are a few causes of lesions.
Research David Wheldon on Google. He is doing amazing work (along with Vanderbilt University) with an antibiotic protocol for MS.
In addition, most MS occurs between ages 20-40 and is of the Relapsing-Remitting variety. RR is determined by having a very definite attack or exacerbation that lasts at least 24 hours. For example, an attack of paralysis or optic neuritis. These are not vague, intermittent type feelings of "something is not quite right."
There is Primary Progressive MS, which does occur most often after the age of 40 and strikes males equally often as females. It is a slow and insidious progression. However, there are NO currently approved drugs for PPMS on the market right now.
All the currently approved MS drugs suppress the immune system and many cause your WBC to drop. I would definitely try several antibiotic regimens first!!
Posts: 23 | From Phoenix, AZ US | Registered: Jul 2004
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dmc
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posted
MS is a disease named for a symptom...MULTIPLE SCLEROSIS...or as in the dictionary Multiple Hardening. (multiple lesions) no known cause because the drug commpanies' studies focus on treatment. Lyme can be a cause of MS as in my case. Find the cause, treat the cause and stop the progression.
I was diagnosed MS in 1988...caused by lyme. Dr. P of CT does a complete presentation tying alot of research...past, present, to lyme being the cause of alot of so called "MS".
Most neuros see lesions and AUTOMATICALLY state MS. They are not wrong but just stop with the symptom as the name.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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posted
Hi Mom, Where do you live in PA...I've seen all 3 PA LLMD's, but am FINALLY getting better in CT!!! I, too, was dx'd with ms. CT found it in 99, but I thought I could find someone closer...it's my own darn fault!
Your Hubby would be in GREAT hands.
Good Luck & God Bless~Reno
-------------------- ~Life's too short, eat dessert first Posts: 134 | From PA | Registered: May 2005
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posted
Sorry, Mom...It's almost midnight & I just jumped out of the shower & read the board...my post was confusing, so please let me explain...CT dx'd my Lyme in Summer '99, as well as 2 Lyme Co-Infections-Ehrlichiosis & Babesiosis done through Igenex. Sweet Dreams~~Reno
-------------------- ~Life's too short, eat dessert first Posts: 134 | From PA | Registered: May 2005
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posted
In reading the posts on this thread, it seems like many people are in the same boat as me.
I was dxed for MS in 12/97 and dxed for lyme and babesia in May 2005.
I am currently on a combination of zithromax and Mepron and am hurting like crazy. Additionally, I am still taking Avonex for MS.
I have an appointment with my MS neurologist today. It should be an interesting dialogue and thinking about where I go from here. I have kept him completely informed with all the testing I have done for lyme. The last time I saw him was in August and I showed him my Igenex test results. He called my a week later and said the 'literature' on Igenex poses a lot of questions. That 'literature' was the NYT and I have made a copy of Igenex' response to that article.
As part of the lyme dx process, I saw Dr. P in Connecticut. I found him to be very good and he made similar comments to me regarding MS and Lyme. As an aside, I went to day camp for two weeks for two years when I was young in Old Lyme, CT.
I currently am a patient of Dr. L in Westchester. I have found Dr. L to be excellent. His office hours are very convenient (opens at 6:30 am on Mondays and Wednesdays) for me.
As good as I think both Dr. P and Dr. L are, it is interesting how each approached their diagnosis of me and the tests they ordered. I believe that I benefitted from their collective wisdom and I am very focused on getting better and living a full life.
Good luck to everyone and here's to getting better in 2006.
Posts: 122 | From Connecticut Shoreline | Registered: Apr 2005
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posted
LunasMom....If you've read these posts, please respond so we'll know that.
Click on the "post reply" graphic.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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LunasMom
Unregistered
posted
Hello, all. Just getting back to my PC after a few days away.
Thank you all for your concern and information.
Groovy2 posted some specific questions that I'll try to answer for clarification:
"You say he had Lyme before-- explane more-- Bullseye bruse-Yes?- Tests? what treatment was given? how long --what meds--how much- was medicine taken contenusily-"
He went to the demotologist for a diffuse, non-bullseye rash along his ribs and side of torso. The doc put him on an antibiotic but it got worse and his joints began to ache, at which point I said "get your butt back there and ask about Lyme." He went back 1 week after first appointment and the doc put him on oral doxycycline for 2 weeks, 200 mg daily. No tests.
"how much time passed from infection to start of treatment-"
Probably 1 week with the rash, then another week between the two doctor visits, so maybe 2 weeks total before Doxycyline was started. He took all the Doxy and symptoms went away right away, and he felt 100%. (Thus, we assumed he was "cured.")
I agree with Michelle M. that the headache and Bell's is more Lyme than MS sounding. Also, he's had no eye problems, which are very common and often the earliest signs for MS.
Charlie felt fluish and headachy about 2 months ago, then about 3 weeks later began to feel very dizzy (is still dizzy) and fatigued, then the Bell's happened, then 4 days after the Bell's, his left leg began to feel weak and he's limping. Currently, the headache and Bell's are gone but the dizzyness, fatigue, and leg limp are still present.
Our new doc (the crappy neuro is fired, as far as I'm concerned) is Chair of the Department of Medicine and Chief Medical Officer at the hospital, and Vice Chair of the Department of Medicine at an affiliated nearby famous Philly hosptital. I know that doesn't assure that he's an LLMD, but he is certainly well-regarded in his field of Infectious Disease.
He did comment that the leg weakness coming on so quickly after the Bell's was fast if it's Lyme, but I wonder if the steroids (2 medrol dose packs back to back) that they put him on after the Bell's could have worsened his symptoms?
posted
I've been watching this thread for awhile . . . glad to see all of the help everyone has taken their time to offer LunasMom.
Just a couple of observations . . . the comment about eye problems being common w/MS hit a nerve for me since Lyme is so notorius for eye problems which makes brings me back I would consider eye problems to be a lyme symptom. Several on this board cannot see well at all.
The other thing that really struck me was the steriods query . . . steriods suppress the immune system creating a perfect environment for lyme to flourish. I rarely hear of anyone getting "better" with steroids, mostly termporaty relief of symptoms followed by additional symptoms and illness.
I'm pretty basic, the doxy worked when taken. Without it symptoms returned and multiplied. I'd be on doxy and off steroids ASAP.
Love your comment that you fired the neurologist! They are notoriously ignorant about lyme and usually so are ID doctors but then again Dr. J in the SE region is an ID and he's not ignorant. Hopefully you have someone who is going to help.
BUT, I will say that if I had any opportunity to be in a LLMD's office with the history and symptoms given, I'd be there ASAP. There is no guesswork w/a LLMD. With a good LLMD, questions are answered thoroughly and you leave knowing you are on the right track.
Good luck w/everything! From someone who is well, Curley
[ 12. January 2006, 07:20 PM: Message edited by: Curley911 ]
Posts: 982 | From Florida | Registered: Feb 2002
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posted
I would certainly pursue the lyme treatment. I had flu like symptoms,no known rash, no bell's palsy, but was checked for MS. I use to open the car door and smack myself in the face with it. I have blurry vision, limp sometimes and I think all of what your husband is experiencing is lyme. I'm no dr. either, but was treated for awhile with orals and felt better too. And then is all came back-worse than the first time. I'm glad you fired the neuro. They don't have a clue!! Good luck to your husband.
-------------------- "I can see clearly now" Posts: 22 | From midwest | Registered: Dec 2005
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david1097
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posted
With the steriods did things inprove at all? They shoudl have with either Lyme or MS.... BUT what happens after is the key. IF HE IS WORSE AFTER TAKING THE STERIODS (AND STOPS) THAN HE WAS BEFORE THEN THERE IS A VERY HIGH PROBABILITY YOU ARE DEALING WITH AN INFECTION OF SOME SORT.
The steriods will make the problems seem to go away during treatment but when you stop you will end up worse than before because of the supression of the immunue response. In addition you will likely need ever higher doses of steroids to bring the same level of releif on the next go around.
If the observations related to the steriod administration holds true as indicated in the case above and there are no other signs of lyme (ie joint prblems), strong consideration should be given to the posibility that you may be dealing with a co-infection of some sort. They can be just as bad or even worse than Lyme, complete with joint problems. In the above case if the symptoms worsen rapidly after the steriods are stopped or after abx are stopped then you are for pretty sure to be dealing with a co-infection rather than Lyme as the cause, It maybe mixed with some residual lyme. Lyme would be expected to worsen at a much slower rate in line with its longer (much longer) doubling time.
What type of co-infections?
Viruses (bad)... many of them, most are unknown to anyone but veterinarians that specialize in tropical animal diseases. Many animal viruses are viable in man. Most do not respond to antivirals.
bartonella (or something like it.... many neuro related problems).. look for odd streaks or stretch marks on the skin. Do the bottoms of the feet hurt in the AM? If so on any of these strongly suspect bart.
babesia (vertigo and severe sweat related problems) (there is a high co infection rate of this as well as bartonella)... Is the urine darker or even red looking during times of worse symtoms?, if so suspect babesia.
Thats all I can think of right now.
I have been through the ringer with this stuff more than once and as a result i have seen the above items/ symtoms in first person.... It gives you a differnt perspective (and unique knowledge) on the subject.
Finally, with nothing on the MRI (did they do a FLAIR study, they should have), this would be very unusual for MS but the lession size may be below the resoluton of the MRI so it is not unheard of.
Finally if it is MS the IV won't hurt the MS but the steriods WILL make ANY infection worse.
The oglio bands are of unknown cause and the assay method used to detect them may cross react with items unknown, but still the fact is that it is positive does suggest but does not PROVE it is MS. I would ask that the oglio test be done again to rule out any lab screw up.
Finally if it is an infection then the treatment for lyme may not be the correct one. drugs good for lyme do not work on some other infections so this is another variable. Your Dr's will have to figure this one out. The co-infection tests are almost useless (yes even igenex) unless they are positive so a negative does not rule out the posibility.
In a worst case you could be dealing with both lyme, co-infections and MS... This posibility will have to be sorted out by your Dr's. Lets hope it is not this.
I hope this gives you some background info that helps.
good luck.
Posts: 1184 | From north america | Registered: Feb 2003
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Please explain why that this would be the worse case scenario.
My current medical strategy is to take Zithromax and Mepron, while continuing Avonex.
Interesting thing about Avonex, I never get any side effects from it. I wonder if it is working or whether I have MS.
If I can get rid of the Babesia and Lyme, the LLMD thinks that my MS symptoms will decline.
Any thoughts?
Posts: 122 | From Connecticut Shoreline | Registered: Apr 2005
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david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
I indicated "worse case scenario" based on the test results that had been indicated. Obvioulsy having all three things is worse than having only one.
When i said "worst case" It was not meant to convey that it was THE worst case. There are lots of things worse than that.
MS is interesting since while its cause is unknown, it seems to follow a relapsing course just like Lyme, (and brucellosis and leptospirosis and bartonella etc.). While I have no particular expertise in the area, from my readings I think that MS is caused by some infectious organism or maybe a variety of organisms that case the MS symptoms based on some peoples genetic makeup. If this is in fact the case, Lyme is known to be immuno supressive in a cyclical fashion so getting rid of the lyme (or at least reducing to a low level) would help a lot.
Something that I have never heard mentioned is that since lyme is immuno suppresive then one would think that a so called "autoimmune" disease would actually get better during a Lyme flare cycle. It would be interesting to find out the experience on this.
I suppose another interesting question would be do AIDS patients suffer from auto immune disorders like RA or MS? if they do then I would think that these syndromes are in fact caused by an infection of some sort?
As always lots of questions, but few answers.....
Sorry for the confusion.
Also, just a reminder, MS is not a "disease" rather it is a syndrome that is called a disease. it cause has never been identified. It may in fact be casued by a lot of different things that given the same symtoms. In fact no one test yeilds 100% reliable results and there are many differnt types of MS. Itis interesting that the Medical Dr's know very very little about slow progression diseases, things like leporosy for example. Lyme is a slow disease also. the net resutl is that if it is not an acute problem and is not mechnical in nature most Dr's will miss diagnose it. Ms is like other brain disease (parkinsons, ALS, CJD etc. ) the Drs have a very hard time coming up with a diagnosis. and when A diagnosis is reached it is based on the best fit into a set of predefined criteria.
I suppose if it where a car it is like diagnosing the problem not knowing how the car actually works. So if it stalls and squeeks and makes smoke when it starts it would fall into a "multiple broken thing" category. The cause... Who knows, but if it ain't an AUTO immune problem it must be psychological
I suppose to carry to this lyme, the car would fall intot he catagory "nothing works right anymore" so either it is a Lemon (not a Lyme) or its a cycle somatic. Posts: 1184 | From north america | Registered: Feb 2003
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LunasMom
Unregistered
posted
Hi, all. GREAT news from a new doc we saw today (MS specialist in Philly)... he says there is no reason to suspect MS and my hubby's symptoms are far more indicative of a recent Lyme infection.
He thinks Charlie was probably bitten by a tick in late October of this year, just before his flu symptoms started and about 3 weeks before his Bell's palsy.
He's currently on IV Rocephin (has been for 6 days) and is already feeling less fatigued and slightly less dizzy.
So, though Lyme is no picnic, at least it's not MS.
Relieved, Luna'smom (Luna is my dog, by the way, who is still bringing deer ticks in on her coat even though it's the dead of winter here in Philadelphia!)
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posted
Congratulations on a definitive answer and getting started on meds so quickly! I am so happy for you, now you can learn about LD instead of having to split your time guessing what it is and learning about MS and LD.
I hope he has a quick response to the IV.
Good for you for firing the neurologist. If you haven't noticed, we all seem to like that part the best :-)
Posts: 982 | From Florida | Registered: Feb 2002
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quote:Originally posted by LunasMom: Hi, all. GREAT news from a new doc we saw today (MS specialist in Philly)... he says there is no reason to suspect MS and my hubby's symptoms are far more indicative of a recent Lyme infection.
Wow, a smart "duck!" Glad to know your hubby has started on IV. How long will he be on it?
You need to get some "Frontline" or something similar for Luna, or you will run the risk of more infections from the ticks.
david....I got the jokes! Very good ones, at that!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
Glad your husband is getting treated for lyme. Lyme often responds well to the first course of antibiotic. In the past the medical establishment and general public thought that meant the infection was gone. As you have learned, it regroups and rears its ugly head with other symptoms.
Regarding IV rocephin, it may being quick results, it may not. Don't be alarmed if it doesn't. Rocephin by itself doesn't always get lyme and does not address the 5-6 co-infections that your husband might have.
If you have not looked at the links for newbies, do read about co-infections. Our llmd, Chester County, recently started testing for Rocky mountain spotted fever. I was positive and feel this is the probable reason that Rocephin did not really help me very much.
You are on the right road, it might not always feel like it, just post here for more input.
After 33 months of continuous GOOD lyme treatment I'm on my first week of maintainence only! Yikes!
posted
Yeah, the scary thing about those darn deer ticks was that Luna would bring about a DOZEN in on her every day! We were putting Frontline on her every 2 weeks (normally supposed to be a once-a-month treatment).
Hmmm... I'm thinking of putting Frontline on us!
Seriously, though, my father has great success with his dog preventing ticks from attaching by using a garlic supplement in Foster's food. We are going to try that.
Last week I found 2 ticks on her (deer ticks). I guess b/c the weather warmed into the 50s here in Philly.
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