Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
O.k., this might be too much information. I apologize upfront.
I have been really sick for 11 days now. Totally bedridden. Original Neuro symptoms back but it's different. Also no energy,head pressure, blurry vision and horrible pain.
I have another sinus infection. I think I ve had at least 6 sinus infections this year. My E.N.T doc usually gives me antibiotics and I get better eventually.
I also have another interstitial cystitis. My last I.C. infection was 2 months ago. My urologist put a cathedeter in my kitty cat and injected a numbing agent for pain and an antibiotic. It was instantaneous relief and cure.
Why, why, why, am I so sick with these infections when I have been on, and still am on antibiotics ? ? ? ? ? ? ? ? ? ?
I have been diagnosised with CIVD so it makes sense that I keep getting infections but I m on a lot of meds.
Tomorrow I get pneumonvax vaccine in order to qualify for IVIG treatments.
I m so scared to put this vaccine into my body but I have NO choice ! Plus.i m so sick right now. . .
Lyme s gotta a hold on me, BIG TIME !!!!!!
Posts: 2977 | From Florida | Registered: Nov 2016
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me
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Member # 45475
posted
Oh, I'm so sorry. I suffered from IC very bad for a long time. They didn't have the numbing agent then. I'm glad that is providing relief.
I'm thinking of you BartenderBonnie. I send happy thoughts and positive vibes your way. I don't know where you are, but they will be really good vibes so they will be sure to find you!
Now, when you wrote that they stuck a catheter in your kitty cat and put in a numbing agent and antibiotic, I must admit, I honestly thought you were talking about your pet cat and was like--I can't believe the vet could help the cats bladder but not Bonnie's! That's ridiculous. So I read the sentences again.
Then I was like, oh, kitty cat. Duh. I'm not joking. Well, at least I can blame it on Lyme brain??!
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Thanks for the well-wishes, me.
I m doing every within my power to get well. I eat clean. Detox, take meds, walk when able, listen to positive music, sleep well, seek out medical professionals that are specialists in their fields, research extensively.
I m in trouble.
X-mas tree is gonna stay up until I m better. Have no energy to take it down anyway.
Posts: 2977 | From Florida | Registered: Nov 2016
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Hey.
You're not in trouble. You're lyme sick and overwhelmed. You're going to have a better day -- maybe not tomorrow, but pretty soon, and you won't think you're in trouble anymore.
That's how this bull**** goes. Keeps us busy for a lifetime it seems like.
Outside of a very unlikely adverse reaction ( VERY unlikely, like .00001 percent or something) the expected outcome of your flu shot is that you will feel absolutely nothing. Nothing whatsoever. At all.
Unless you don't feel well enough to go, and you can then reschedule -- right? So no worries.
Right now you're not in trouble, you're on a flare. Killing chetes. Go to sleep, netflix and chill, and wait for the reboot. It's coming.
Posts: 2057 | From Florida | Registered: Feb 2015
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You say: "I have been really sick for 11 days now. Totally bedridden."
and
"Tomorrow I get pneumonvax vaccine in order to qualify for IVIG treatments.
I m so scared to put this vaccine into my body but I have NO choice !" (end quotes)
No one should get any kind of vaccine when they are sick to start with. No one. Ever.
There is a choice to wait.
and be sure that IVIG is what you really want. so that all options and outcomes have been considered - if you are to do the vaccine at a time when you are feeling better.
Apart from the not getting a vaccine when you are ill . . . for study before any further decisions. Even if you decide to go ahead AFTER you feel better, this is key detail to know and there are some things to do to help your body out prior and afterward if there is a vaccine to be done.
VACCINE INGREDIENTS - Informational Links set -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- PROBIOTICS ?
Have you been using probiotics along with the antibiotics -- just never at the same time, though as abx can destroy their goodness?
Candida infection of sinuses / bladder are very common with antibiotic use and require antifungal methods.
IDENTIFY offending agents
Could also be different kinds of bacteria that are not affected by the particular antibiotics you take. That's very likely with sinuses and with bladder. A urine test to determine what is going on is important. And a sinus swab, too.
Avoid baths, scented personal products and rinse with water each time you use the toilet with squirt water bottle. Dab with tissue but do not wipe.
If you are in an intimate relationship, it's best to avoid sexual relations during IC. And maybe have partner checked if you keep getting recurrent infections, too. Sometimes allergy to products such as condoms can also trigger IC.
A Goldenseal / myrrh salve might be of some help for tender outer urogenital tissues. Avoid any chemicals.
Sinus SALINE spray with xylitol usually helpful.
Dairy free diet important for sinuses to avoid phlegm build up that harbors germs.
Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Search archives. There are several excellent past threads on IC. Search "Cystitis" in the medical forum, subject box. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
To clarify. . . I do not want IVIG. I need to have it. There is a difference. I was told straight up from LLMD that I will never get better without it. I have no immune system.
As far a sex, non existant. Who would want me with all my missing skin and muscle mass. I never smile. And I have no energy to sustain a relationship. Plus it must be so stressful, I can't imagine.
I have researched the vaccine. It must be done. Unless you can prove small fiber nerve disorder. Then you need to have punch holes of skin and muscle biopsies. NO THANKS.
My pain threshold is so low, if I get a hangnail, I gotta get an ice pack on it.
I take 3 different probiotics that I keep in the refrigerator purchased through LLMD.
I mentioned anti fungal meds to ENT doc but he said he didn't think that was my problem. Probably because I thought of that before he did.
I want to get shot tomorrow because I have to wait 4 weeks after the shot to get blood retested for antibody response. The longer I wait, the longer the treatment is delayed.
This is the insurance company's protocol, not doctors.
As far as the Interstitial cystitis, it's a quick fix. Go to urologist, drop your drawers, and it's over in 1 minute.
I ve had these infections before. Many times. But never when I was on antibiotics which is what concerns me so.
Posts: 2977 | From Florida | Registered: Nov 2016
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
Bonnie - sorry you are having such troubles.
IC is bladder problems w/o an infection isn't it? Are you taking D-Mannose?
I am curious what your IgG and IgA levels are. It sounds like they must be low. If you don't want to share them here - perhaps PM me?
You are getting the Pneumovax 23, right? What about HiB?
When I first was Dx'd - and started IVIG - not sure what happened - I had no record of having done the vaccinations. I had the titer results though - I always ask for copies.
New doctor required I do the vaccine challenges. I went to GP to get them. They gave me a "card" - listing the vacc's. and date given. Now I have proof I did them.
I failed the Pn23. The immuno said I responded well enough (I didn't). Some types I did not respond at all. The immuno said - "well we don't know if you did the Pn23".
I did the Pn23 vaccs and the Pn23 titer tests. If I had done the Prevnar (12 types?) of course that would have shown no response on some types. Geez.
I did what I was supposed to do - and now have the proof. Won't have to do it again.
IMHO I think you will qualify for IVIG/SCIG and it will help you.
I now have yet another immuno. Sometimes I feel like I know more than the doctors. That's sad.
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
"me" - I read it the same way you did. Thinking her cat got better treatment for bladder problems at the vet than she got. The numbing agent.
I mention this - have been thinking along those lines.
Also in severe pain - don't know if neuropathic or actual damage to muscles and tendons.
A horse vet would palpate the animal - do nerve blocks - to help find source of pain.
Why can't they do that for humans?
Bonnie - for IC - one has to watch the diet. Many things cause flares. Perhaps you know that already - but thought to mention.
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
I don't take d-mannose but take lots of supplements.
I can't remember my exact numbers but they were very low. Diagnosised with hypogammaglobinemia and CVID.. If your number is below 200, then you don't have to do the vaccine challenge. I just missed it.
They also told me after 6 months of IVIG, the insurance company might stop treatment for a couple of months and retest my antibody numbers.
Nothing comes easy with Lyme. Nothing.
Posts: 2977 | From Florida | Registered: Nov 2016
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
NO ONE UNDERSTANDS PAIN LIKE A LYME WARRIOR !
Posts: 2977 | From Florida | Registered: Nov 2016
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
Research D-Mannose - it helps me people. (many people - oops).
I've never had to stop treatment to test antibody levels. I've never really had problems with insurance companies - "just" doctors.
I forgot to mention on the above - years ago when having bladder problems - Dx'd with IC - the doctor offered to blow up my bladder.
With water - to stretch it - I guess is a treatment. I said no thank you.
I did some research - somehow - pre-internet I think and pre-Lyme AFAIK.
I had been drinking a V8 juice every day for forever. Stopped doing that - was mindful of what I ate/drank - and the IC went away.
Also FWIW my sister and I call a kitty cat a Yahtzee. Don't know how we came up with that one. Yahtzee is a board game - like Monopoly - played last century. Probably one must be old to have played the game and remember the name of it.
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
After another restless night and all morning arguing back and forth with myself over whether I m healthy enough to get vaccine, I called off doctor s appointment.
If I wait till I m healthy enough, then that would probably take me till the end of time plus 1 day.
Anyway, it's for the best. I know better than to have any medical procedure done on a Friday.
Went into my bag of tricks and pulled out a bottle of silvercillin. My naturopath doc turned me on to this outstanding remedy for all kinds of viruses and bacteria disorders.
I m taking 1 TB twice a day. Don't count me out just yet !!!!!
Posts: 2977 | From Florida | Registered: Nov 2016
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
total agreement with keebler. I wouldnot get any type of shot or booster.
your system jus couldnt handle it.
my doc wanted to give me tetanus and I said no way.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
If you have a virus, yes, you should wait to get the vaccine until you are feeling more your Lyme sick normal.
If you are just suffering from a Lyme flare, there is no reason to wait. You would continue waiting in vain because, if like me, no matter how many high powered IV antibiotic combos that your doctor tries to treat you with, none will work without immune support!!!
You have an Immunodeficiency, the vaccine challenge will better help your doctors to understand what exactly is wrong with your Immune system, and what actually works. It will help them to better treat you.
Also, once you take the vaccine challenge, you will never take it again.
About every 3 months you will need to recheck your antibody panels to prove to insurance companies that you have CVID.
This is to prove that you do not have another disease like protein losing enteropathy that allows the body to lose the immunoglobulins in your stool. Insurance does not cover IVIG for other diseases like that.
When you get your antibodies checked after starting IVIG, you do not stop treatment. The doctor expects to see a low normal IVIG result. This shows that your treatment is being absorbed. They also want to see a reduction in the number & severity of your illnesses.
As for Lyme, it is not a miracle cure. It will be much much harder for you to fight Lyme than it is for all those here without CVID. Sorry friend.
Begin the fight.
Posts: 5237 | From here | Registered: Nov 2007
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Thanks for the feed back Sammy. I wanted to hear from someone who has gone through this.
I had 42 tubes of blood taken a few months back, ordered from 2 of my doctors. I split them up over a weeks time.
My IGG panels were duplicated because both doctors ordered the same work-up.
First test very low. Second test, numbers plummeted farther a week later. 0 out of 23 antibodies for pneumonia.
What more do I need to prove ?
Anyways, all I ever wanted was for 1 doctor to give it to me straight, tell the truth, tell me what I m in for treatment wise, time wise, and prognosis wise.
Since I ll never get that from them, I thank you that I got it from you !
Posts: 2977 | From Florida | Registered: Nov 2016
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
Be your own doctor, like many of us here.
You can still go see normal docs, but just add up own research...
Be surprised when you realize your own treatments work much better than all of their treatments combined (that sometimes mean anyway NO treatment).
We're left to treat ourselves in great part for lack of choice ...
....and because a couple of months of study with what is left from our brains brings us MORE answers than 99% of MDs and specialists together.
It's not a joke, it's the sad reality.
They have no interest in your health, your sanity, your pain, your feeling of being eaten up alive and no one is doing a thing to help you.
Even for some few who do care, they simply cannot help for lack of experience, understanding and due to complexity of the picture.
Who would believe you are dealing with dozens of active infections AT ONCE?
start mentioning your overlapping symptoms, they'll stop listening to you.
They can't be true, like 50 symptoms a day, no way. They won't believe.
No normal person, no common MD, no specialist will believe. They'll all doubt your sanity.
It's been like that for ages, for ALL chronic lyme sufferers.
You're just one more, unfortunately, going through the same lyme nightmare.
Don't expect help unless your found lyme literate doctors /healers / naturopaths, but GOOD ones!
The best is: keep learning, trying, diagnosing yourself and treating yourself WHILE you still try to get some help with them.
Waiting is not good. You know it. Shouting to them will not help.
There are herbs, alternative treatments, many have got rid of lyme or can live /work/ study with lyme only due to their own treatments.
Knowledge is power and the only way to receive treatment, for many of us.
AT least, until you find REAL help.
Even when you get the best (expensive) professionals to help you, your health still depends GREATLY on what you do every day, what you eat, what you do to detox, what kind of supplements or drinks you are taking...
DO NOT TAKE THE JAB.
When a jab damages, it may take years to get well from it. If ever.
I got rid of lyme, but what I fear most, is not lyme, but it is jab damage.
that's of course, my personal opinion.
I don't vaccinate my child any longer (after age 2), after so many allergic reactions.
I'll do all in my power to avoid that she gets any jab whatsoever, until she's 18.
I'm not a doctor, I know there are dangerous things out there (herbs or crazy treatments) but really, I feel many of us know more about lyme than all these common MDs and specialists combined.
Posts: 6199 | From Brussels | Registered: Oct 2007
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Brussels, I agree with you regarding the safety of vaccines.
Unfortunately, I have no choice. I need the IVIG treatment in order to fight any infection, not just Lyme.
I ve been on antibiotics and steroids all my life, way before I got Lyme. My misfortune was not of one my doctors ever gave a **** as to why I was always getting so sick.
I now have a diagnosis and a treatment plan.
I have to take the vaccine challenge or become a vampire.
Posts: 2977 | From Florida | Registered: Nov 2016
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
do you plan on getting a flu shot?
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
The flu shot is for influenza, which is a virus.
The pneumonvax is for pneumonia, a bacteria infection.
There are many side effects. Everyone reacts differently because of their genetic make-up and immune systems.
I do not take this decision lightly.
All the antibiotics, herbs, supplements, healthy diet, exercise, and sleep will not provide my body to produce enough antibodies to fight infections.
I need help in that area. The treatment is to use donor plasma, which contain donor antibodies.
And the donor plasma is not without risks either. Whatever latent viruses and bacteria that are not screened out of the donor plasma, is past onto you.
This is serious stuff.
That's why I HAD to drink Steve s shot.
Posts: 2977 | From Florida | Registered: Nov 2016
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bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
quote:Originally posted by Bartenderbonnie: NO ONE UNDERSTANDS PAIN LIKE A LYME WARRIOR !
My nurse friend with ic did ozone installation via catheter. ..and said she felt it was bartonella vinconii at the root ..not many abx hit bart ..fq ,rif and tetra ,gent ...have them shoot som of that there and see if it give you that relief ..
another person with lyme may one day want accompany your brokenness, dont lose hope
also for the nasal stuff if beg spray works it gram neg ..if a spray with gse its probably fungal ..
i mix xylatol ,gse ,silver ,saline and thieves .in a spray .burns good but works ..
doc said same thing with ivif and my wasting ...however ..they only have offered to punch holes ..still waiting while i use bvt ..wbc is up ..platelets still low ...dern marathon
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Sorry you re still awake Bluelyme.
I m trying to medicate to control pain but not working.
I m diagnosised with Lyme, bartonella, m pneumonia. Along with many other disorders to numerous to mention.
Currently severe pain in upper left area under ribs. It raps around to back and down through spinal cord into urethra and into sciatica nerve through ass to lower leg.
Another restless night with this dreaded disease.
I researched skin biopsy punch test. It seems barbaric and painful. Not the route I want to take.
Hope you find relief soon. Not much more we can take.
Posts: 2977 | From Florida | Registered: Nov 2016
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posted
Here's something I used to melt mucous down deep at the infection site - Pulsatilla 30C homeopathic. And I believe Bluelyme has a good sinus spray. You might want to pm her.
Posts: 653 | From Northern Virginia | Registered: Oct 2014
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
My bag of tricks is really a large BOX of tricks.
Assorted homeopathic meds, herbals, essential oils, prescriptions, tens unit, OTC products for every maladies known to mankind.
Not to mention groceries of healthy diet.
Broke $$$$$$$$$$
Want to get deep tissue massage but scared the Keyes will burrow deeper into areas they haven't invaded yet on their own.
Everyday is a new battle that I seem to be losing at this point of time.
I thank God for lymenet as a place to connect with people who truly understand this unbelievable mess I find myself in.
Posts: 2977 | From Florida | Registered: Nov 2016
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
Bonnie, I'm just crossing my fingers this damn vaccine will help you.
I wouldn't take it, because I have another arsenal of possible treatments, energy testing, a couple alternative doctors and other naturopaths I could see.
I would go away from it, because in my experience, no one can really help you out of vaccine damage.
Some can help you a bit, others will try their best guns, but unfortunately, when a damage is done, is for very long.
An infection is something I wouldn't fear too much, as it is still a bit 'natural'. Your body evolved with it, as your immune system.
A vaccine is not natural, and your body does not have any specific gun to fight it, in case of damage. That is why I would avoid it.
Inject me with bacteria, viruses, anything, I can still 'take' it.
But with mercury, aluminum, plus additives... to play with my immune system, then damage nerves or brain, well, I'm very chicken with that.
Unfortunately, there is no warranty you'll get cured from pneumonia with a vaccine.
If there were, why not risk it (as you are risking your life with pneumonia)?
----------------------------- What are the possible outcomes?
1. the vaccine works perfectly, it stops your infection, you get no damage at all, long term.
GREAT.
2. the vaccine helps your body, but not completely, still no damage long term.
You still have to though find a solution for pneumonia, but you feel less overwhelmed with the infection.
GREAT.
3. the vaccine helps only minimally, still not damage long term.
You got anyway to find other solutions for pneumonia, but you didn't lose anything.
GOOD
4. the vaccine helps with pneumonia, but you get damaged long term, not too seriously.
At least, you didn't collapse from pneumonia, but you got to find help for your vaccine damage. I think homeopathy or some therapies may help.
OK.
5. the vaccine helps with pneumonia, but you get severely damaged, long term.
BAD. Extreme vaccine damage is hard to fix.
Harder than chronic infections for this reason: vaccine damaged people do fight chronic infections plus the neuro damage, immune damage.
you get a double problem, both very hard puzzles, with only one probable solution (the infectious side of the problem can be somewhat solved, but the neuro damage from vaccine, I doubt).
6. BAD 7. BAD
What I mean, is that even if you get cured from pneumonia with a vaccine, the main problem will be damage: how much is the damage done?
Little damage is still okay.
Big damage cannot be okay because of the double problem you will have later: chronic infections + vaccine immune and neuro damage.
Of course, if you feel you have no choice, try to get all homeopathic treatments to prevent VACCINE DAMAGE before, during and AFTER vaccination.
Take the injection or the vaccine empty vial home to prepare your own homeopathic dilution to avoid reactions.
This exact vial that was injected is worth more than gold, I swear (it contains the whole information for future use, in case damage is done and to prevent damage).
I would preserve it with pharmacy grade alcohol, in a dark fresh place, and treat it like gold.
Just my opinion.
Some people don't react badly to vaccines. But they are usually in better health than most of us.
Posts: 6199 | From Brussels | Registered: Oct 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- To correspond with Brussels' post above:
1. Yes, there are always other ways to approach anything - not just lyme - regarding treatment options. A good LL ND would be a good person to ask - be sure to read all you can from this thread:
For those considering complementary support methods / or other avenues entirely:
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
I have read all the helpful links and posts from everyone who responded, so thank you .
As for my I.C., I love my urologist. After all, I don't drop my drawers for just anyone.
I have a LLNP and she s really impressive with energy testing, reki, supplements, and herbs.
But I needed more aggressive treatment so I got a LLMD. My LLMD has been on holiday and returns Monday. I will hold off on vaccine until I pick her brains.
Posts: 2977 | From Florida | Registered: Nov 2016
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Most NPs (nurse practitioners) are not fully educated in the area of herbs. They may know of a couple but an ND will have a four years medical degree in this disciple.
While some LL NPs might have a better grasp than the average NP,
A LL ND will have a fuller educational background and many more options to explore. Of course, ILADS physician training also matters much.
ND = naturopathic doctor - it might be helpful to see the background / training of who you are working. Some might acquire various training along the way and they would likely include that on their bio pages -- or ask them. Most are glad to share. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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