posted
Please bear with me on this. I am sarcastic right now.
I just word from my Doc that I should have been dead three years ago!!! I am a lucky guy!!
The last MRI stuff I had done says I have a Gliomatosis Cerebra. This has a life span of 12 months. The first and last MRI I had done was four years ago.
Well anyway my Doc is talking about a needle biopsy to check this out.
I want them to look for Lyme in the brain fluid.
How do I go about finding the lab that can do this?
Thanks and Peace me with you,
John
-------------------- Nov-08 NutraMedix, BurBur Pinella WORKS, Japanese Knotweed, d-Lenolate, ALC, Was on Salt/C 1.5 yrs ended in 06 My brain is working better!!
Feeling very good now Posts: 182 | From Northern, NJ, USA | Registered: Sep 2003
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posted
Oh you know some days the brain does not work to well.
I meant to say that that I was supposed to HAVE a life span of 12 months.
Peace be with you,
John
-------------------- Nov-08 NutraMedix, BurBur Pinella WORKS, Japanese Knotweed, d-Lenolate, ALC, Was on Salt/C 1.5 yrs ended in 06 My brain is working better!!
Feeling very good now Posts: 182 | From Northern, NJ, USA | Registered: Sep 2003
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posted
You might want to give Igenex a call. I think they do this sort of thing on a regular basis.
A friend of mine has an AO3 and is very active with brain cancer treatment, research, clinical trials, and advocacy.
If you PM your e-mail to me, I'll get you in touch with her and some of her resources.
I'm so sorry for what you're going through. It shouldn't happen to anyone, yet it does. Still, there is hope.
Sending hugs, strength, and mojo.
-------------------- If you don't know where you are going, any road will take you there. - Lewis Carroll Posts: 356 | From Body-PA, Mind-elsewhere | Registered: Dec 2007
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posted
Thanks for all the good thoughts and wishes.
My past experience says that a lab will only talk with doctors. Do I remember that correctly?
I have actually been feeling pretty good these past few weeks after starting on NutraMedix herbs and other herbs.
At least I think my brain is working better.
My concern here is that I want a test done that LOOKS for the lyme bugs in my brain. I really hope there is one. This is not for me it is really for everyone else a few years from now.
The past few weeks I have been thinking about when I was in the RAGE a few years ago. That lasted about a year. I am really sorry for being so angry with people in my life. The anger and the rage just comes on so easily. Then again I had no control over it. It was controllin me and had complete possesion of me. Now I can actual see what I was doing back then. I just don't want to be like that again.
Peace be with you,
John
-------------------- Nov-08 NutraMedix, BurBur Pinella WORKS, Japanese Knotweed, d-Lenolate, ALC, Was on Salt/C 1.5 yrs ended in 06 My brain is working better!!
Feeling very good now Posts: 182 | From Northern, NJ, USA | Registered: Sep 2003
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posted
You want to ask your doc and or a lab about dark field microscopy, wrights stain microscopy and other similar microscopy options. as well as the possibility of trying to culture the Borrelia, although that is harder from what I've read. Those were the options to look for the spirochetes in my daughter's blood samples when trying to diagnosis her TBRF/Borreliosis.
If you go to pubmed and type in Borrelia you can find lots of images of the spirochetes in various media.
Posts: 12 | From CO | Registered: Nov 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Have you been (or are you being) treated for lyme? It sounds as if you do not have a LLMD. PLEASE consult one.
If this is lyme-related, with treatment, you may be able to avoid the biopsy (it in not an easy procedure). If they are not planning surgery, the biopsy will offer little real information anyway. There are much better ways to test for lyme.
CSF (cerebral spinal fluid) is not suggested as a test for lyme. Lyme can be present but can still not show in spinal/brain fluid.
Especially if there is stress and light, spirochetes run and hide. Spirochetes HATE vibration. They will not likely hang around after the drill to show you their party costumes. They can spring to a quieter location.
posted
Try Clongen Labs. The phone is often answered by the microbiologist -- Dr Kilani. He will speak to patients. They have lots of new DNA testing available.
Yes I have a lyme doctor. Yes I have been treating this for about 4 years now. I think I had it before then. I have actually felt better more recently than I did as a kid. I could not walk when I was 5. Maybe they thought I had polio back in 1959. My legs would NOT work and my spinal cord swelled up and I spent 2 weeks laying on my back in the hospital. This so that the brain would not get affected. I don't remember too much about it BUT now I think I got bite by something back then. right now my problem is learning how the Nutramedix products affect my body as I am taking them. Thanks for your interest and peace be with you. John
-------------------- Nov-08 NutraMedix, BurBur Pinella WORKS, Japanese Knotweed, d-Lenolate, ALC, Was on Salt/C 1.5 yrs ended in 06 My brain is working better!!
Feeling very good now Posts: 182 | From Northern, NJ, USA | Registered: Sep 2003
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How big is the "thing"? That is really hard to discribe. On the MRI it just shows up as kind of cloudy. Sort of like a blurry area on the films. It does not show up on the SPEC scans and I guess that means something. There are no real area that indicate a lesion. But then again I haven't asked if this was a lesion. I thought lesions had a more intense contrast to the rest of the brain. This is on my left side and affects the area of the brain that remember names. The left frontal temporal lobe. I have had some pain in this area over the years. Pain that I could feel. The only problem that bothers me when I want it to is not being able to think to well and forgetting what I just did.
Thanks for the PubMed web site and the copy click spelling of Gliomatosis cerebri, borrelia. That put a smile on my face as you made it easy for me to find the "stuff". Not that I can understand what it talks about.
Thanks and Peace me with you,
John
-------------------- Nov-08 NutraMedix, BurBur Pinella WORKS, Japanese Knotweed, d-Lenolate, ALC, Was on Salt/C 1.5 yrs ended in 06 My brain is working better!!
Feeling very good now Posts: 182 | From Northern, NJ, USA | Registered: Sep 2003
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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From what I read, a Gliomatosis Cerebri will be rather diffuse rather than a clearly defined circle. The SPECT seems promising. I'm still wondering why they are ready to do this based on a 4-yr old MRI.
And, if you been treating for four years, I guess I'm a bit disappointed that, apparently, your LLMD is not offering any advice on this matter.
I don't know about Clongen Labs but, yes, Igenex labs ( www.igenex.com ) will talk to people. They treat everyone like an intelligent human being.
I would have hoped your neuro doctors could tell you more from the SPECT or order other brain scans. A brain biopsy is a very invasive procedure and it may not be that helpful for any of the decisions you have to make.
So, as you are doing, you are wise to ask exactly what good this will for all possible scenarios, before going ahead with it. I hope you find the answers you need to be comfortable with these tough decisions.
Case Author(s): J. Philip Moyers, M.D. and Farrokh Dehdashti, M.D. , 5/17/96 . Rating: #D4, #Q5
Diagnosis: Gliomatosis Cerebri
Excerpts:
Brief history:
This patient presented in September 1995 with worsening headaches and has had progressive changes in the white matter on serial MRI examinations.
[following 2 MRIs] . . . PET imaging of the brain was requested to evaluate for areas of most active disease to further direct future biopsy.
Discussion:
. . . On this examination, a PET study was performed to evaluate for areas of focally decreased activity which may yield positive biopsy results. . . .
. . . SPECT scans are useful, but PET scans are probably more useful. . . .
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You can scroll down to read descriptions of many types of brain imaging:
. . .
PET: see link
SPECT:
Similar to PET, single photon emission computed tomography (SPECT) uses radioactive tracers and a scanner to record data that a computer uses to construct two- or three-dimensional images of active brain regions (Ball).
SPECT tracers are considered to be more limited than PET scanners in the kinds of brain activity they have the ability to monitor.
The tracers of SPECT are longer lasting than those of PET, which allows for different, longer lasting brain functions to be examined, but this also requires more time for the SPECT to be completed. The resolution of a SPECT is poor (about 1 cm) compared to that of PET.
SPECT is often chosen over PET simply as a cost issue, for less equipment is involved and fewer staff is required to perform the tests.
posted
Keebler -- I thought he meant that he had an MRI 4 years ago and one recently and only the recent one shows the gliomatosis... But I could be wrong.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
Hello Keebler, Thanks for the info on the different scans and posting them so I can get them. You are very helpful and kind to do this. I am sort of overwelmed with your generosity, sort of brought a tear to my eye. Well enough of that! What I really want to say is thanks!!! and I send a BIG smile your way. My emotional confussion is my issue.
The first MRI I had four years ago showed a diffused area also. The doc said I had a mild stroke. The MRI I just had done shows a bigger area is affected.
I was wondering how I find out about the different brain defects that show up on the MRI films? I realize there are probably a few diferent ones.
I needle biopsy is done with a drill thru the skull???? Oh No!!! That is not a good thing unless I want to make a new area in my skull bone for the bugs to live in. The bugs just move right into damaged body parts.
The bugs love all the white body tissue because of limited blood flow in the white tissue, bones, ligiments, cartledge, fat, eyes and intestine linings.
How about a MRI film get togeather? Would that not be great? We all bring are films and compare what we got on them. I am up for that!!!
Hey look I got this foggy cloud area that covers about 5% of my brain and you got white lines on yours.
So maybe my doc doesn't know everything about LD. I think it will not be possible for any doc to know all of this. The research and information keeps changing. The doc would have to read all the time to keep up. My doc has LD. I thrust this person for that reason even on the brain fog days. I am off the typical Rx drugs and using herbs and Nutramedix products. I think these are working every well for me.
Take care and Peace be with you,
-------------------- Nov-08 NutraMedix, BurBur Pinella WORKS, Japanese Knotweed, d-Lenolate, ALC, Was on Salt/C 1.5 yrs ended in 06 My brain is working better!!
Feeling very good now Posts: 182 | From Northern, NJ, USA | Registered: Sep 2003
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Thanks for your kind words, John. Hey, this is a lot to take in so I hope these posts help more than they overwhelm. In just a bit of a check, it seem the procedure is a bit easier than in times past in that the "halo" is no longer used.
As not everything is lyme, this test can determine what else may be going on. However, to determine lyme - or even inflammation if from lyme - that would require an expert lyme doctor's advice first. I would never trust any doctor, hospital or lab to get that right. And, personally, I would never to a biopsy to hope the winning lotto ticket in a lyme test.
As for what else this might show, perhaps there is a patient advocate or someone in the hospital's patient education office who can tutor you so you know all you need to before moving ahead.
Be sure to ask if steroids would be given during or after the procedure and how they would minimize the risks of seizures from scarring.
I really don't mean to scare you. I've had too many surgeries - or tests - where I had no clue of what to ask or what to prevent. Many folks get this procedure all the time and most probably do just fine. I'm just such a fan now of learning all one can.
Can you get treatment without the biopsy?
Best of luck. I know this is daunting. Keep that sense of humor.
I don't think you've said what your LLMD advises. I hope others come along with some great leads for you.
A brain biopsy is the removal of a small piece of brain tissue for the diagnosis of abnormalities of the brain, such as Alzheimer's disease, tumors, infection, or inflammation.
Purpose
By examining the tissue sample under a microscope, the biopsy sample provides doctors with the information necessary to guide diagnosis and treatment.
Precautions
Imaging of the brain is performed to determine the precise positioning of the needle to enter the brain.
Description
When an abnormality of the brain is suspected, Stereotactic (probing in three dimensions) brain needle biopsy is performed and guided precisely by a computer system to avoid serious complications.
A small hole is drilled into the skull, and a needle is inserted into the brain tissue guided by computer-assisted imaging techniques (CT or MRI scans).
Historically, the patient's head was held in a rigid frame to direct the probe into the brain; however since the early nineties, it has been possible to perform these biopsies without the frame.
Since the frame was attached to the skull with screws, this advancement is less invasive and better tolerated by the patient. The doctor (pathologist) prepares the sample for analysis and studies it further under a microscope.
Preparation
A CT or MRI brain scan is done to find the position where the biopsy will be performed. Prior to the biopsy, the patient is placed under general anesthesia.
Aftercare
The patient is monitored in the recovery room for several hours and is usually required to spend a few days in the hospital since general anesthesia is required.
Risks
The procedure is invasive and includes risks associated with anesthesia and surgery. Brain injury may occur due to removal of brain tissue. The resulting scar, left on the brain has the potential to trigger seizures.
. . . results . . .
Various brain abnormalities can be diagnosed by microscopic analysis of the tissue sample. The pathologist (a physician trained in how disease affects the body's tissues) looks for . . .
. . .
Stereotactic brain needle biopsy
In this procedure a computer uses information from a CT or MRI to create a three-dimensional map of the operation site to better guide the needle to perform the biopsy.
posted
Thank you for concern Keebler. This little old brain tumor is not that big of deal. I have actually been feeling really well the past month. I felt much closer to being dead a few years ago. I was falling asleep all the time, had no energy, could not think, scared all the time, full of rage, totally incompident, dizzy and even after just a small amount of exercise I would ache for days and I had no good bacteria for the intestines from 2004 to 2006. The anti-botics killed it. That is all back now!!! I took fist fulls of probiotics for abot 6 months. And the best part is that I have actually been feeling better the past two years after being on salt/c than I have ever felt in my life. The salt/c made the lagest changes to my body, all very good. Then the edema came after I had some alcohol. (A weak time in my disapline of two years.) I eat organic food, no meat, juice veggies, Ezikeal ceral and pasta and keep the toxins out of my body, off my skin, out of my air, off my clothes, I continue to change and I feel good about the changes.
Peace be with you,
John
-------------------- Nov-08 NutraMedix, BurBur Pinella WORKS, Japanese Knotweed, d-Lenolate, ALC, Was on Salt/C 1.5 yrs ended in 06 My brain is working better!!
Feeling very good now Posts: 182 | From Northern, NJ, USA | Registered: Sep 2003
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posted
Well yes I went to the doc. Really high level stress before I got there. The affected area is bigger. The swelling is more. The line in the middle of the brain is pushed more over to the right side. This is from the swelling in the left side. The big deep folds on the outside of the brain are seen less in the affected area. There are some new areas by my noise that the doc says are common with my age. All of this shows with the T2 signal films. Nothing else shows anything. SPECT scans are to see if blood is leaking out around the brain cells. I have no leakage. PET scans are to see if the tissue is alive or dead. I have not had a PET done. Biopsy is to see if it's cancer, treatable or something else in the tumor family. This affects the area in my brain that words for speaking are stored in. Gliomatosis cerebri according to Wikipedia can be many types of tumors. There are many subcategories to this general name.
My doc wants me to see the doc at UMDNJ in Newark. He says they will look through a microscope and see lyme if it is there. Is this true? What kind of microscope?
I do know that my brain swells if I drink too much. I think my lymph system needs some major cleaning.
I also plan on making sure my urine stays alkalized again. I have to start juicing more. There goes my life again. I go to work and spend the rest of my time taking care of me.
The big problem? How do I tell my family about this? I am very much more concerned about them. I am not that concerned about me dying from this. It will put a lot of stress on me to tell them, too many questions for my dead word brain. My family does not handle sickness too well. We usually do not talk about it. Too many unknowns to go through, I am 54. I have two sons (24 & 21) and a wife, 4 sisters and one brother and 86 year old mother. There is not a person in my family I can talk to about this. I have to make some big decisions and plan for what could happen.
Peace be with you
John
-------------------- Nov-08 NutraMedix, BurBur Pinella WORKS, Japanese Knotweed, d-Lenolate, ALC, Was on Salt/C 1.5 yrs ended in 06 My brain is working better!!
Feeling very good now Posts: 182 | From Northern, NJ, USA | Registered: Sep 2003
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I am sorry I don't have any advice for you but it seems Keebler is doing a fine job in that area.
I just read through your posts and just wanted to say I hope everything works out for you as it sounds like you have had a really rough time of it.
Its tough having all of that family around you and not being able to confide in them. Maybe they might surprise you, It just sounds like a lot to go through alone.
You sound like a decent bloke and your attitude is top notch. Thats what will get you through in the end.
Sending you some positive vibes.
-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Posts: 648 | From Ireland | Registered: Jan 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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John,
So that I could better read this - and for others who need more white space, I reset your recent post so that you might get replies from more people:
-------------------
Well yes I went to the doc.
Really high level stress before I got there. The affected area is bigger. The swelling is more. The line in the middle of the brain is pushed more over to the right side. This is from the swelling in the left side.
The big deep folds on the outside of the brain are seen less in the affected area. There are some new areas by my noise that the doc says are common with my age.
All of this shows with the T2 signal films. Nothing else shows anything. SPECT scans are to see if blood is leaking out around the brain cells. I have no leakage.
PET scans are to see if the tissue is alive or dead. I have not had a PET done.
Biopsy is to see if it's cancer, treatable or something else in the tumor family. This affects the area in my brain that words for speaking are stored in.
Gliomatosis cerebri according to Wikipedia can be many types of tumors. There are many subcategories to this general name.
--
My doc wants me to see the doc at UMDNJ in Newark. He says they will look through a microscope and see lyme if it is there.
Is this true? What kind of microscope?
--
I do know that my brain swells if I drink too much. I think my lymph system needs some major cleaning. I also plan on making sure my urine stays alkalized again. I have to start juicing more.
There goes my life again. I go to work and spend the rest of my time taking care of me.
--
The big problem?
How do I tell my family about this?
I am very much more concerned about them. I am not that concerned about me dying from this. It will put a lot of stress on me to tell them, too many questions for my dead word brain. My family does not handle sickness too well.
We usually do not talk about it. Too many unknowns to go through, I am 54. I have two sons (24 & 21) and a wife, 4 sisters and one brother and 86 year old mother.
There is not a person in my family I can talk to about this. I have to make some big decisions and plan for what could happen.
Peace be with you
John
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[ 21. November 2008, 01:27 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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John,
First, is there some way you can talk to a counselor. As you said there is no one in your family, this might be very helpful.
As for if the pathologist either in the operating room or the lab where the tissue would go will adequately check for lyme, I think you still need more answers.
I'm really toast right now and have to rest. I'll check back later, hopefully, to find just the right connections listed for you.
I admire your courage - and do hope you find some emotional support. We all need that. It is natural and very necessary.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Yes, tissue samples from the brain (or from many other areas) can be tested. But I would definitely use a specialty lab do this.
Bea Seibert suggested this lab. Thanks, Bea!
I just spoke for several minutes with the microbiologist - Dr Kilani at Clongen Labs.
Notes from my conversation:
Brain tissue from a bioposy can, indeed be tested. ``Absolutely,'' he said. ``Better results than with blood''
He said that several LLMD's have found about 5 cases of brain tumors - Gliomas (the kind that you deal with, John) and other tumors from which tissue from a brain biopsy all tested positive for borrelia.
He said it can't be said just yet if lyme caused each of those tumors, it could be coexisting, but it is still an important finding.
Now, while if borrelia resides in the tumor or tissue same, it should show in their test -- if tissue is taken from an area of the brain where borrelia is not residing, then absence of findings could not say for sure that it might not still be in brain/body as it can evade capture in the tissue sample taken.
He says the tissue will have a better chance of testing if they capture it from any area that shows an affected area on a brain scan. Tissue directly from a tumor is helpful, too.
Contact for necessary prior arrangements - a special test kit - doctors' instructions, etc.
They don't take insurance. It is self-pay but they will provide a detailed receipt so a patient can submit it for insurance reimbursement - if such is covered out of plan. It would also serve for medical deductions for the IRS.
Current cost is $200.00 for brain tissue for borrelia test.
He said all prices on the web site (but I could not find that page - I'm too dizzy today)
Call and talk to them. Or find an advocate to take charge of your fact-finding tasks. If you do this, be sure instructions are followed precisely by all members of your team.
david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
I'm sorry to hear the news,
The image you describe is consistent with what is nornally seen with Gliomatosis Cerebri BUT The question that I have is why has the progression been so slow when it is typically much faster. This in my mind opens the possibility that there may be something else going on that may look like Gliomatosis Cerebri.
Given this atypical behavior, If it were me I would investigate further to see exactly what it is. Unfortunately Gliomatosis Cerebri is difficult to even determanstically detect using the non intrusive imaging techniques that are available today. There has been some work done with carbon 11 based PET but I think that is limited to research centers. MRI is limited and non specific but a combination of no contrast enhancment, t2 visibility, no t1 visability and physical displacment point to a tumor. Spect does not do much given the trade off between metabolic activity and tumor profusion, CT is not much good due the the tissues being very similar, FDG PET is not of much use either. This all boils down to biopsy.
Given the gravity of the problem if it were me I would do the biopsy IF it changes the treatment modality for Gliomatosis Cerebri, Ie is it treatable with what survivability should it turn out to be Gliomatosis Cerebri. If treatment is for the most part paliative then there may be not any use to do the biopsy since the analysis would not change anything.
To do tissue analysis you need to find a certified pathologist, not a lab. A pathologist would look at it anyway for suspected Gliomatosis Cerebri and all it may take is for someone to ask to also look for bacterial infection. Different stains would be used for this. A lab may apply additional tests but my question is of what bennifit this would have,
What ever the process that is going on and given that it is visibly enlarging, I am pretty sure that a pathologist would be able to see what it is... thus no need to go to high sensitivity things like PCR, in other words save your money (pcr only finds things that you are specfically looking for) unless the pathologist can't understand what is going on.
I'm sorry that I can't provide more encouraging news.
Prepare for the worst but hope and pray for the best.
Good luck.
Posts: 1184 | From north america | Registered: Feb 2003
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lymeloco
Unregistered
posted
DON'T EVER PRAY FOR THE WORST!!! yOU GOT IT????
DON'T BELIEVE EVERYTHING THEY TELL YOU!!! YOU WILL MAKE IT. YOU HEAR ME? WHAT THE HELL DO THEY KNOW??? YOU WILL MAKE IT!!! DO YOU HEAR ME??
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posted
Keebler Quote>> I'm really toast right now and have to rest. I'll check back later, hopefully, to find just the right connections listed for you. << End quote.
Thank you very much Keebler. I also saw your post on being dizzy. I didn't realize you had this going on. Thank you for your time.
I want to tell you that I have found fat to make me dizzy. When I did not eat fat the dizzy brain went away. About 24 hours after stopping the fat.
Now I can take OMEGA 3 but even this a few years ago made me dizzy.
Now I have been using Burbur and Pinella and Parsley from Nurtramedix and these really clear up the brain. I am impressed with how fast they work.
I told my son and wife on Saturday. It went good. It was decided to ask the recommended doc's about the biopsy and then think some more. The rest of my family is not going to know for know.
The tumor or lesion may not be a tumor or lesion. It could be lyme or something else. I always thought tumors were solid.
This does not look solid on the MRI. It looks more like a cloud of fog. It did not show white as bone would appear. It only shows up with the T2 signal.
Let just say IF it is a tumor and it is what they say. Then it is not very big because of the diet have been eating.
I have been on organic food for at least three years. I cannot eat toxins, hurts the brain. I have felt this.
I try to eat mostly vegtables to alkalize my body.
I use Ph-ion.com, Ph strips, to check urine and saliva Ph, acid or basic, level. This changes with the food I eat. The idea is to stay alkaline. People with cancer are acidic.
It also changes with how much stuff is being killed in my body. The more that dies the more acid the body gets.
I also take Serrapeptase that breaks down the fibrin that holds the bugs in place.
I think there are many different types of abnormal brain MRI's and this is just one of them.
Peace be with you,
John
-------------------- Nov-08 NutraMedix, BurBur Pinella WORKS, Japanese Knotweed, d-Lenolate, ALC, Was on Salt/C 1.5 yrs ended in 06 My brain is working better!!
Feeling very good now Posts: 182 | From Northern, NJ, USA | Registered: Sep 2003
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