feelfit
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posted
All I know is that this is the research out of the lab in Arizona who was finding something on red blood cells that they were previously calling hemobartonella/mycoplasma.
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METALLlC BLUE
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I'm very excited about this information. This is a new chapter, if I had to guess.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
feelfit
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posted
Luecovin is the folic acid treatment. I was confused about this aspect.
so the Tx Combo is: Pyrimethamine Sulfadiazine med Leucovin
This I am told is only one potential combo, there may be others as well.
Yes Mike I looked up toxoplasmosis and it does make sense and is very exciting indeed.
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METALLlC BLUE
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As soon as you find out more, contact me. I'll be doing my homework quickly on this and I suspect it'll be much easier to make sensible combinations simply based on what "hasn't" been used on patients vs what I've seen who had the F-smear.
In another thread earlier -- two days ago or so, I made this comment.
quote: I also think we're looking at a very persistent pathogen. It probably is a parasite. I've been on IV Vanco, Oral Pen, Oral Bactrim, Oral and IV Levaquin, Tetracycline, Biaxen/Plaquenil, Azithromycin/Amantadine, and it still showed up on Dr. F's slide.
I then mentioned I was on 6 caps of Artemesiae, 4tsp of Mepron, and 500mg Azithromycin, that I was concerned I wouldn't see progress. No Bactrim or other sulfa medication is being used, yet when I talked to the doctor a couple weeks ago she told me "If we can add Bactrim, I'd be so excited for you, that would be the perfect combination in my opinion, for what you're dealing with."
Now, what clicks with me is that it's the combination that is probably the issue and the narrow spectrum of treatment that this parasite responds to. I know very few people who have been on Mepron and Clindamycin or the other medications. I've always heard of people using one or the other. Occasionally Bactrim and Mepron at high dose were mentioned, but it was rare. These patients usually reported strong results but didn't recover fully.
It must be a very narrow spectrum, and this may be why the approaches are fraught with mixed results, but often strong reactions.
[ 04-02-2009, 05:34 AM: Message edited by: METALLlC BLUE ]
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
feelfit
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posted
Look for Kelmos post tomorrow. She has an appt and said she will post info regarding same.
I know nothing else other than what this person told me anonymously.....I am just the messenger.
Feelfit
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seekhelp
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Thanks Feelfit. You're a miracle worker!!! Now, I wish I knew if I had this bug. Never got a Fry blood smear. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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cantgiveupyet
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Yup Metallicblue....makes perfect sense about the similarity to the toxoplasmosis.
Thanks so much Feelfit :-)
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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posted
I don't understand. Is Clongen and Fry seeing the same bug? Suggesting the same treatment? I have been following both.
Thanks for any help with this!
Chris
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sparkle7
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posted
I just posted in another thread about:
Intrinsic B12/folate (This includes 200 micrograms of folate as a combination of folic acid, 5-methyl tetrahydrofolate, and 5-formyl tetrahydrofolate, also known as folinic acid or leucovorin (another active form of folate), 125 micrograms of vitamin B12 as cyanocobalamin, 22.5 milligrams of calcium, 17.25 milligrams of phosphorus, and 5 milligrams of intrinsic factor)
What a coincidence...
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feelfit
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posted
I can't speak for Clongen, this info pertains to the F lab in Arizona.
If you have had a F blood smear and were told that Hemobartonella/Mycoplasma was present, this is the same bug, now identified as a protozoa with a similar DNA as toxoplasmosis.
Feelfit
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feelfit
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Good Link Myco, that article was dated 2003, wonder if they made anymore headway?
Feelfit
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cottonbrain
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posted
wow, thanks for the news!
now i wonder:
there are apparently two different pictures people have reported with the F smears:
the first,(and less common, perhaps?) like mine, shows little black 'dots' that appear to be on the inside of the cell, or at least on the surface, not outside the cell walls
the second type of bugs appear to adhere to the outside of the cell walls
my question is, is this new protozoa only the type of bug that appears outside the cell wall? or both types?
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bettyg
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posted
feelfit, thanks for update; i forwarded your post to my lyme list group fyi ...
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posted
One of my docs prescribed VRM4 for toxoplasmosis. Will ask my doc to test that for me and see if it comes up even though I don't seem to have toxo
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Hoosiers51
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posted
I wonder if it is more important to get rid of the mystery bug first (as in, could this bug be a 'gatekeeper' for Lyme), or Lyme first. Seems like this treatment wouldn't have much of an effect on Lyme, from what I'm reading.
There is an "alternative" protocol for toxoplasmosis that uses pyrimethamine, leucovin, and either minocycline or doxycycline (instead of the sulfadiazine). I wonder if that would be an option for some people who think Lyme is still a concern and want to treat both at once.
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kelmo
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We see Dr. F tomorrow at 4pm. I am not going to bring this up, but I'm sure he knows someone who watches the blogs.
I know it will be a patient-specific protocol, so we can't put up a blanket treatment.
My daughter just happens to need a refill on some meds, which is the main reason we are seenig him.
But, I'm going to encourage him to take blood and get this show on the road.
Will let you know what he says.
Thanks for the information.
Oh, by the way, Clongen didn't develop this testing on their own. They are using Fry Lab's model. What they have found is the same bug, but they aren't pursuing it since Fry Lab is already moving forward.
Fry has been pursuing this for the last 10+ years. A passion on his own. We've been keeping up with his work for the last 3.5 years. I'm glad for him.
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posted
I wonder if Alinia will/would help with this.
I've been on it for a month, and have had a huge unpleasant herx-type thing happening.
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quote:Originally posted by Hoosiers51: There is an "alternative" protocol for toxoplasmosis that uses pyrimethamine, leucovin, and either minocycline or doxycycline (instead of the sulfadiazine).
I really do hope that this alternative treatment would also work. I cannot take Sulpha drugs.
Gabrielle
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Hoosiers51
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posted
Gabrielle,
It may be too early for those of us with the mystery bug to even speculate about treatment though. Maybe the combo feelfit mentioned won't work for everyone, and we'll need to send our blood to Fry Labs to find out which drug combo we need.
I don't know, on second thought, if I will be bringing this up to my LLMD just yet, because what if that combo isn't right for me, and I would just be wasting my time on it, feeling worse?
So I was moreso "thinking out loud".....and it might be too early for those of us on the outside to just kind of guess what's right right now.
That's just my two cents and what I've been pondering in regards to this.
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heiwalove
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posted
does anyone know if the fry lab testing for the mystery bug is 100 percent accurate, or close to it? i doubt it, given what we all know about the reliability of even the most sensitive TBD tests, but thought i'd ask regardless because my fry tests came back totally negative. i wonder if this means definitively that i'm not infected with the mystery/toxo-like organism..? (wishful thinking, perhaps..)
heiwalove
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posted
also, i wonder what people think about the current fry lab tests (which, i gather, have changed since i had their bart and babs test nearly two years ago) vs. the clongen tests. it seems that clongen can test the specific DNA of a whole series of bart and babs genus PCRs? i admit i haven't been following this as closely as i should..
You are right. It's too early to jump into a treatment. In any case we should wait until Dr. F. will officially publish something (I hope he will). Then, we should get tested again. Until then, there will be maybe some experience with some of his patients who started the treatment.
Tosho,
Thanks for the great info. It gives me hope to see that there might be alternatives.
Gabrielle
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beths
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posted
In case this helps-
Treatment of choice (with sulfadiazine and leucovorin) for CNS toxoplasmosis. Fansidar (pyrimethamine/sulfadoxine) is not a first line agent for malaria prophylaxis due to high incidence of rash and the availability of better tolerated alternatives (e.g., atovaquone/proguanil, mefloquine, and doxycycline).
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merrygirl
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posted
I have toxoplasmosis, and one of my llmds said that mepron would treat it FWIW.
havent had a fry smear
doing well on bactrim, bicillin, mepron, biaxin, diflucan famvir
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posted
My son's doctor (not a LLMD) put him on leucovorin for low folic acid levels. It caused him to have cracking eczema in the bend of his arms. Over the counter folic acid (Intrinsic B12/folate) does not do this.
I can't wait to hear/read more!
Jen
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posted
Are there particular symptoms associated with this mystery bug?
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disturbedme
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posted
Sooo... I have a question......
If I had a positive "Bartonella spp." smear from F labs, is that the mystery bug or is that really Bartonella? Or does the mystery bug just pertain to the tests that said "Hemobartonella/Mycoplasma"???
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
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lymie tony z
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posted
Sorry, but I believe this is an "Old" advesary.
Perhaps with just a new name but protozoans are known pathogens associated with the co-infections delivered by vectors!
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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charlie
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posted
...since sulfa and folic acid were mentioned, maybe this is part of the key to why bactrim seems to work for many of us despite no pharmacological evidence why it should??
Charlie
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feelfit
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posted
Disturbedme,
I can';t answer your question other than to say that my hemobart/mycoplasma smear looked exactly like your bartonella smear to my untrained eye.
Little black dots attached to the sides of the cell wall.
Feelfit
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feelfit
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posted
Also, as Hoosiers has said, there are potentially several treatment combinations. The one that I posted above is just one of those that my source knew about.
As I understand it, treatment combinatins may be tailor made to the particulair patient by testing their blood.
Again, I am only the messenger.
Feelfit
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Hoosiers51
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posted
Has anyone here taken Mepron and Bactrim together for more than 4-5 months and still tested positive for the mystery bug?
(I'm wondering if maybe Bea's husband did....)
I agree with charlie that I wonder if this is why people respond to Bactrim.
If you look at the regimens lined out for toxoplasmosis encephalitis in AIDS patients, you'll see there are quite a few options, but they are specific and usually invovle at least two drugs.
I've speculated in my own mind if a toxoplasmosis-like organism is at play in tick borne disease patients for awhile. It started with an article I read about toxoplasmosisis' link to psych disorders, and then when I started reading about what Mepron does it began to make me go "hmmm" (and maybe others here have too) just because of the drugs that seem to help TBI patients (clindamycin, Bactrim), and the fact that that parasite is so easy to pick up anyways, I'm sure it has cousins that would be easy to get too.
But there are still other questions, like why wasn't this seen before (and then someone wondered what it is) if it is also in the blood of ALS, MS, etc patients? That's one of my main questions....I'm sure Dr. Fry couldn't have been the first person to see this bug in a smear, but why was he one of the first to wonder what it was? Does it look a lot like something else, so that other scientists just readily dismissed it?
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METALLlC BLUE
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Here is the thing though. The BLO that Dr. Burrascano noted and this pathogen that Dr. F is talking about may not be the same.
Regardless, it doesn't matter to me since if you had the Smeart done, and the DNA testing has been finalized, it's quite an easy conclusion to draw that we have clear visibility and a go-ahead to begin attacking with the help of an LLMD who has been following this circumstance with Dr. F.
[ 04-02-2009, 05:30 AM: Message edited by: METALLlC BLUE ]
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
Hoosiers51
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posted
I agree with Metallic Blue.
I think the mystery bug and BLO have always been separate.
BLO was very clearly described by Dr. Burrascano as a bug that responds to Levaquin in his practice. Then it seems like people started jumping to all sorts of conclusions about "BLO", taking it farther than it should have been taken. (in my opinion)
The whole original point of BLO, (again, in my opinion, because it seems like it began to mean different things to different people), is that some patients who test negative for Bartonella (before all these Fry and Clongen tests became available) respond to Levaquin and/or Rifampin. One of Clongen's bugs might still be the BLO though.
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hshbmom
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posted
Is this announcement an April Fool's joke?
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METALLlC BLUE
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posted
Ok, here is another consideration. If BLO responds strongly in some cases to Levaquin, and patients with BLO also happen to respond well to Bactrim, but often Levaquin and Mepron or anti-parasitic treatments aren't given together, what is the connection, if -- BLO is connected in someway through the Levaquin inhibitory effect on whatever it's killing.
Levofloxacin is a broad-spectrum antibiotic that is active against both Gram-positive and Gram-negative bacteria. It functions by inhibiting DNA gyrase, a type II topoisomerase, and topoisomerase iv[23], which is an enzyme necessary to separate replicated DNA, thereby inhibiting cell division.
The fluoroquinolones interfere with DNA replication by inhibiting an enzyme complex called DNA gyrase. This can also affect mammalian cell replication. In particular, some congeners of this drug family display high activity not only against bacterial topoisomerases, but also against eukaryotic topoisomerases and are toxic to cultured mammalian cells and in vivo tumor models. Although the quinolone is highly toxic to mammalian cells in culture, its mechanism of cytotoxic action is not known. Quinolone induced DNA damage was first reported in 1986 (Hussy et al.)[24].
Bactrim
Co-trimoxazole exhibits a theoretical, although perhaps not a clinical,[1] synergistic antibacterial effect when compared to each of its components administered singly. This is because trimethoprim and sulfamethoxazole inhibit successive steps in the folate synthesis pathway (see diagram below). They did not exhibit synergistic effects, due to the requirement of a 1 in 5 ratio, which was observed in the laboratory. However, in clinical situations the ratio in the tissue was observed to be 1 in 20, resulting in no synergy. Tetrahydrofolate synthesis pathway
Sulfamethoxazole acts as a false-substrate inhibitor of dihydropteroate synthetase. Sulfonamides such as sulfamethoxazole are analogues of p-aminobenzoic acid (PABA) and are competitive inhibitors of the enzyme; inhibiting the production of dihydropteroic acid.
Trimethoprim acts by interfering with the action of bacterial dihydrofolate reductase, inhibiting synthesis of tetrahydrofolic acid.
Folic acid is an essential precursor in the de novo synthesis of the DNA nucleosides thymidine and uridine. Bacteria are unable to take up folic acid from the environment (i.e. the infection host) thus are dependent on their own de novo synthesis - inhibition of the enzyme starves the bacteria of two bases necessary for DNA replication and transcription.
Now look at the first main grouping on this image belong:
Scroll down to the bottom and look at this chart. On the far left side of the chart, you'll see it's broken down into three categories. The first being: Bikont: Chromalveolate: Apicomplexa
Now these break down further, but notice all the treatments and medications that are listed as you break down the groups.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
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posted
What we're seeing is a pattern connecting Babesia, Malaria, Toxoplasmosis, then we're seeing a combination of drugs that are both common and uncommonly given. Often these are given because of antibacterial effects, yet -- we're dealing with a Parasite.
Could the issue simply be a lack of appropriate "narrow" spectrum treatment? We've been taking "buck-shots" aiming with a shot gun at a bacterium when it just happened that those antibiotics also concidentally hit this parasite when we now ought to be aiming with a sniper rifle.
It appears to be a species that has a cross biological pattern between Malaria and Toxoplasmosis, this would mean, the guns you aim have to be specific, antifolates -- Dihydrofolate reductase inhibitor, and Dihydropteroate synthetase inhibitor
These drug combinations of: Pyrimethamine, Sulfadiazine, with supporting potential treatments being: diaminopyridines (Pyrimethamine #), biguanides (Proguanil #, Cycloguanil), Sulfadoxine seem most appropriate for most people, and then altering the treatment slightly for different strains, which would require
Because of the likely rapid rate of resistence, I'll hypothesize that patients who used only a dihydrofolate reductase inhibitor without the other inhibitor, built resistence. Improved quickly, then failed quickly, unless on another drug that accidentally was interfereing with the parasite, like (drum roll), Mepron, Clindamycin, Bactrim etc.
You need: dihydrofolate reductase inhibitor and dihydropteroate synthetase inhibitor plus an additional supporting drug like "Artemesiae, Mepron, -- different drugs that inhibit proazoans along the same genetic hallmark.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
My lyme friend met Dr. Fry the weekend of his lyme conference. Dr. Fry is doing some interesting stuff. I don't know details but it is what I was told.
I look back, there has been A LOT of progress made in the treatment of lyme/co's in the last 3 years.
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Hoosiers51
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posted
hoot,
Thanks, that is what i was wondering and that makes a lot of sense.
Metallic,
Could you restate what you are saying two posts above this one about Levaquin in that first paragraph? I'm confused as to what you're saying.
Are you saying Levaquin and the anti-toxoplasmosis drugs need to be given in combo to beat this TBD syndrome we're struggling with?
I am starting to loose my focus/reading abilities, but I scanned what you said under "Cha-ching" and saw artememisinin there.
I have been thinking artemisinin plays some kind of huge role in this TBD thing for awhile.........I herx like "h-e-double hockey sticks" under Bactrim and artemisinin. Mepron just stirs things up, but provides no relief for me. I have tested positive for lyme/bart hen/babs dun/myco pneu.....but I know there is more to this illness.
I'm glad others are as interested in this discovery as I am.
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posted
I have a positive Toxoplasmosis IGG, IGM, had a cat etc... and my LLMD has never specifically treated it.
Hm.....
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METALLlC BLUE
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Member # 6628
posted
Hoosier, what I'm saying is Levaquin seems to have no effect on this particular infection. Those who respond strongly to Levaquin are responding to something else, a bacterium, not a parasite.
I'm saying that
quote: Because of the likely rapid rate of resistence, I'll hypothesize that patients who used only a dihydrofolate reductase inhibitor without the other inhibitor, built resistence. Improved quickly, then failed quickly, unless on another drug that accidentally was interfereing with the parasite, like (drum roll), Mepron, Clindamycin, Bactrim etc.
You need: dihydrofolate reductase inhibitor and dihydropteroate synthetase inhibitor plus an additional supporting drug like "Artemesiae, Mepron, -- different drugs that inhibit proazoans along the same genetic hallmark.
If you try only one or two, and one is in a supporting group rather than the dihydrofolate (reductase or synthetase), it's going to resist treatment quickly. You may note improvement and then failure in the majority.
If the patient is given both folate inhibitors, plus a supportive inhibitor outside the folate family, the next broad spectrum inhibitor would be Artemesiae with Hemozoin inhibitors, or Mepron or a cycline, like Doxy, Mino, Tetra.
It appears that alone, these are mostly worthless, just like with Babesia. So take Babesia treatment, cross it with Malaria's "Folate Inhibitor", and you'll be attacking Toxoplasmosis, if you slightly alter the particular Sulfa drug you use. The Sulfa drug can't just be random, it needs to be as closely related to Sulfadoxine as possible, which explains why Bactrim "helps" but isn't the holy grail.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
While it is good to have some more information about the bug, this is pretty discouraging news with regards to treatment. Presumably the bug is intracellular but not intra-erythrocytic (lives in tissue but not inside RBCs like malaria or babesia). I wonder if Drs. will push the doses of tmp-smz (Bactrim) before trying pyrimethamine/sulfadiazine. That combo carries a relatively high risk of serious (sometimes fatal) complications. Treatment for some of the intracellular parasites like toxo can be a lifetime affair as well. Hopefully that will not be the case here as the lifecycle of this bug is worked out.
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blaze
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posted
My Fry test says I have hemobartonella/mycoplasma. Do all LLMDs know about this yet?
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METALLlC BLUE
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posted
Many do Blaze at least secondhand from other patients. It doesn't mean they're doing anything about it.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
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