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» LymeNet Flash » Questions and Discussion » Medical Questions » the road back

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Author Topic: the road back
Lily
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I just discovered this organization. I did a search on this site and learned some more.

Does anyone use this protocol? Do you do it with your LLMD? Would you need to work with a Rheumatolgist who understands/agrees with it?

Since my main Lyme issue is inflamation and high SED rates...it got me thinking. I was originally told by some MDs down here that they think I had some early auto immune tpye thing. However, I tested negative for everything that they suggested.

This protocol only uses minocycline, right? What about co-infections? It seems limited.

Anyone out there successful with this?

Lily

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Tincup
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I am doing a modified version of it. Works well for me so far.

Once I knock down the Lyme to a manageable situation... with the drug of choice... not necessairly mino.. then I'll move on to address coinfections.

The basic idea is low dose the meds... and/or pulse.... so inflammation doesn't eat your innards and herxing doesn't send you to the ER.

That's my theory anyhow.

If approaching it with LLMD... might want to send it to them in advance of your appointment... and refer to it as "pulsing" or maintence therapy. They have guidelines to cover that topic.

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Lily
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"The basic idea is low dose the meds... and/or pulse.... so inflammation doesn't eat your innards and herxing doesn't send you to the ER."


Hmmm. Interesting. Inflamation IS my main problem and I have been to the ER!

LLMD suggested pulsing and lower doses this last visit. As well, a little short term prednisone. This seems like a possible fit.

It doesn't seem opposed at all to what my LLMD is doing.

Anyone else?

Lily

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Parisa
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I've been bouncing back and forth between Roadback and Lymenet for a couple of years now. In general, it's low dose. Some people do do IV especially clindamycin however it's usually cycled in for maybe five days every month or so.

Some others if they aren't responding to the minocin or the doxycyline spice things up with some Zithromax. But compared to Lyme treatment the protocol is simpler.

The people with scleroderma who catch it early enough do great which is nice to see because otherwise they'd be dead in a few years.

Lupus is tricky and the doctors have to be careful with the antibiotics.

Rheumatoid arthritis often times does well but seems to need a little more tweaking with diet or other antibiotics.

Basically, all of these autoimmune conditions are helped with antibiotics due to the fact that they are caused by an infection. The combination that works depends on which infection(s) the person has going on in their body.

AP low dose (but not as low as Marshall Protocol)seems to work well for alot of people over there.

My husband has Lyme induced dermatomyositis with lung involvement which has a very poor prognosis. For him, the low dose AP approach is too slow and he would be dead by the time it finally kicked in. So we're doing the heavy duty Lyme approach.

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Keebler
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-

I investigated the for a while and talk with a few people from The Road Back Foundation. I was amazed at the progress they reported and it seemed quite sincere.

They are not selling anything. So, ask for someone from there to talk to. Most doctors will not do this, however, ask TRB folks and they may know of some.

Be sure, though, that co-infections are ruled out. This would not address those.

And, low dose may not be strong enough to penetrate and reach ... and with lyme, mono therapy can result in ineffective treatment. Abx are combined so as to hit the spirochete in all phases - different drugs for different forms/stages.

I wonder if doxycline would work the same way ?

One concern I have is that minocycline is often toxic to the vestibular system (that inner ear balance part).

some people seem to do okay, while others experience such vertigo and tinnitus that they cannot continue.

Taking B-6 might help . . . using the timed released, pelleted type, minocin might help, too.

Oh - and a month or so ago there was a minocycline recall (a bad batch), so be careful if you buy this over the web as it's harder to know your source or your source's source.

There have been some discussions about mino at this tread:

Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=065801


-

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riverpatrol
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I have debillitating lyme arthritis, and I have been seeing a well known Road Back rheumatologist since Nov of last year, as well as my LLMD. I was still treating for lyme at the time, but tapering off.

The rheumy put me low dose (Monday-Wednesday-Friday) minocycline - he insisted that it be name brand, not generic. Then a couple of months ago he started me on clindamycine, too. He wanted to do IV clindamycine, but insurance wouldn't pay for it. His dx is suspected mycoplasma, but he can't prove it because the tests are negative. For whatever reason, he's afraid to use the lyme dx.

He absolutely will not prescribe prednisone. But, once a month he does give me a shot of steroids. I must say, the steroid shots have provided me with the most relief from inflammation pain since I contracted this blasted disease. Since I am wary of steroids, sometimes I go every other month, but boy I sure am hurting that second month.

He also has me take several supplements: immunoglobulin, joint support (glucosamine, condroiton, MSM), 2 different probiotics and betaglucan.

I have improved, but progress is extremely slow. It's frustrating because neither the rheumy nor my LLMD can give me a prognosis. All I can do is sit and wait...

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kelmo
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When my daughter got sick, the only thing she tested positive for, along with her ANA, was myco pneumonia.

After a year of being bounced from doc to doc, I googled fibromyalgia (last doc's diagnosis), and mycoplasma(after a year, doc said it would go away on its own--nope, it was a higher titer!).
This led me to the IMMED

Garth Nicolson emailed me within an hour after I gave him my daughter's story. He couldn't refer me to a doc, but he sent me to The Road Back. From there, I was referred to my LLMD.

I came armed with information from The Road Back and the IMMED. He knew everything I came prepared with,and then some.

We burst into tears.

My daughter has been on mino for the last 10 months. She had to start VERY SLOW. She takes 200mg daily.

We talked about pulsing, and still may do that so she is functional to attend some classes.

She is using a cream for her face right now that contains clindomyacin. That explains the recent herx. She's getting a double whammy

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Keebler
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-

Kelmo - ohhhh . . . there is a clindomyacin cream. That's good to know.

RIVERPATROL:

Your doctor may have used the labs suggested here. But, if not, they may have more sensitive testing.

You problaby already know this, but (research doctor) Nicolson's life work is mycoplasma. That's the researcher Kelmo mentions in previous post. The IMMED referred to is his institute - link:

www.immed.org/index.htm

The Institute for Molecular Medicine
A nonprofit institute dedicated to discovering new diagnostic and therapeutic solutions for chronic mycoplasma infections.

www.immed.org/

www.immed.org/illness/clinical_testing.html

Patient Clinical Tests


For chronic illnesses (CFS, FMS, RA, among other illnesses) that could have an infectious component, The Institute for Molecular Medicine suggests the following lab tests (codes are CPT codes):

1. MycoplasmaTest Panel (CPT: 87798x3, 87581)--Mycoplasma species panel of 4 pathogenic mycoplasmas (M. fermentans, M. penumoniae, M. hominis, M. penetrans) by PCR. Alternatively, a Mycoplasma general (all species) test by Qualitative PCR can be substituted.

Continued at link.

This is good for EVERYONE to look at.

Other tests are discussed, too.


-

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kelmo
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The cream my daughter was prescribed for her sudden explosion of acne was Benziclin. Burns like fire. But, it has benzoyl peroxide and clindomyacin.

Her neck lymphnodes swelled up and looked like a frog. She's had to back off on the cream.

The lab we use, is our LLMD. You can do a search for Frylab on here. Lucky, huh?

My daughter has been in treatment now for two years. She has improved about 60%.

Her most tenacious symptoms are still neuro and back/head pain. Which is where she started, so I guess we're working the symptoms backward.

She went off mino for a month, and the joint pain started coming back. So, I guess she'll be a lifer.

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Lily
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Here is what I find confusing...

If you are doing low dose to help stop the crazy inflamation...

How do you know that your dose is high enough to kill the bacteria?

Lily

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Keebler
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-

Yes, that is the question. And there are different thoughts.
That is the main question you want satisfied in your mind before you begin a particular plan.

As well: will it address all forms/stages and penetrate the BBB - blood brain barrier.

Always, in early infection, treat aggressively and for long enough, according to ILADS' research methods and guidelines. This the most important time to get everything right.

However, unless treating an early infection, we are in this for a while.

The Road Back Foundation (RBF) is not intended to be a protocol for chronic lyme/TBD (tick-borne disease). However, some LD/TBD have found it to be helpful and more tolerable. They've been around for years and I do think that many who have gone through the RBF may have had undiagnosed lyme/TBD.

However, you are correct in that the RBF does not treat for a full range of TBD. If present, those much be addressed.


Speaking to the low dose approach, sometimes, not pulling out all the guns can still change the atmosphere and make it undesirable for infectious microbes. And, to have less stress on the liver's detox function can be helpful.

We can get well only as well as our liver works to take out the debris. You can support that, but you can't force it.

Be sure to read all they say about this and talk it over with a LLMD, if you are lucky enough to have one.

So, again, whatever is done, regardless of dose, it does need to cross the BBB. The protocol needs to address all forms/shapes over time and be sure to be able to penetrate or help break down the biofilm that bacteria create around themselves for a defense (I don't know if viruses and protozoa like babesia also create biofilms or not).

Some of the thinking around low dose is that it is less of a shock and strain on the body (especially the liver) and does not create the state of alert so much so the bacteria rise up in such a battle.

There are some LLMDs who take a lower dose approach with different abx than what the Road Back Foundation or the Marshall Protocol does (and MP uses Benicar and vitamin D avoidance so they are for a even more select group, mostly those who test high in the D tests).

If you are wanting a slower approach, it need not be the RBF or the MP as they are very restrictive with the abx used. The MP uses a progressive tier of combination abx yet the MP also makes using supportive supplements nearly impossible. I don't know about that with the RBF.


The RBF also may be getting benefit from effect of abx other than the antimicrobial nature - as the MP, addressing the immune system changes.

Still, for patients with various TBD, a combination approach addresses the various stages/forms of the infections.

Some LLMDs are looking into lower dose for some patients, but still a combination approach.


Ask around for LLMDs who are experienced with the works of the LLMD who retired last year from Colo. - Dr. M. (I just sent a PM with more detail). You may also learn of specific supplements, such as NAC, which must be taken to enhance the work of the abx.

NAC may be the number one supplement to make this all work better.

Good luck.

-

[ 16. June 2008, 12:41 PM: Message edited by: Keebler ]

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Keebler
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Lily,

to see if I answered your question, I went back and re-read your note.

Oh, I wish I had a nickel for everytime someone with a stealth infection was told it was "just auto-immune" - true, auto-immune dysfunction can exist without infection, however, very often, many patients have undiagnosed infections w/ immune system dysfunction as a result.

If that is the case, the underlying infection(s) must be addressed with support to the immune system. Often, auto-immune conditions are treated with steroids and that can be a disaster for anyone with lyme or other tick-borne disease.


You said you tested negative for everything your doctor tested you for. When you said "everything" - I assume you meant lyme and co-infections.

FIRST: did you ever have bulls-eye rash? Ever.

SECOND: have you ever removed an attatched tick?

THIRD: if so, did you ever feel a bout of flu after that time - or did you have any sort of rash at the time, or shortly after the tick attachment?

Then:

Do you know exactly what they tested?

Which type of test for lyme (Elisa - or Western Blots for IgG and IgM - or other method?

Which labs did the test?


I'll just address what and let others come along with more on this.

In addition to lyme these are to be clinically evaluated. Labs help.

all the other tick-borne diseases (co-infections) such as babesia, erhlichia (2 types) but it's now called anapla-something, bartonella, RMSF, and more.

Other chronic stealth infections to be considered are Cpn (Chlamydia pneumonia), mycoplasma, HHV-6 and HHV-7, etc., etc.

Hepatisis should be ruled out, but know that Hep C can also take a long time to show up on tests.

I'm not complete here - but, I wonder if you doctors really considered all that they should - and you have to know you got the right tests . . .

all that said, the tests are not all that great. that is why I hope you can work with a doctor who has seen hundreds or thousands of chronically ill patients - of which most have improved.

ILADS at www.ilads.org - See the Guidelines for Treatment there.


www.igenex.com IGENEX Lab - for testing of lyme and other tick-borne infections.

FRY LABS - I see many references by others to this. I've not used them but you might do a search here or find their site with a google search.

-

Mostly, though, the reason to use Igenex for lyme tests is that the test more "bands" than other labs. Also, though, it's important to have an LLMD do a clinical evaluation - seeing you and taking a history - talking to you for at least 30 - 60 minutes.

Tests that may come back marked "negative" may not be negative and only a LLMD can assess that. Most other doctors would give up too soon.

This sad reality is described in the Savely article to follow.

-

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Keebler
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-

This gives you an idea of why all doctors are not on the same track.

Savely does not elaborate on co-infections, as those are always assessed by a true LLMD. Her article mostly points out that the profession is split, many doctors uninformed and patients led from one incompetent doctor to another.

Therefore, the first doctor a patient "hires" matters tremendously.

-----------------

http://tinyurl.com/2dmvs2

Clinical Advisor
Clinical Feature
Issue Story
From the May 2007 issue of Clinical Advisor (home page: www.clinicaladvisor.com )

CONTROVERSY CONTINUES TO FUEL THE "LYME WAR"
By Virginia Savely, RN, FNP-C

*****
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.

Excerpts:

`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.


"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."

. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.

- FULL ARTICLE AT LINK ABOVE.

=============================
=============================

http://www.ct.gov/ag/cwp/view.asp?a=2795&q=414284

Connecticut Attorney General's Office

Press Release

Attorney General's Investigation Reveals Flawed Lyme Disease Guideline Process, IDSA Agrees To Reassess Guidelines, Install Independent Arbiter
May 1, 2008

Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.

The IDSA guidelines have sweeping and significant impacts on Lyme disease medical care.

- report continued at link above.

-

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Keebler
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-

last post - really - the hamsters are not all running today -

I went back again to see -again - if I got your question right.

when I first saw that you said "I just discovered this organization."

I think I thought you meant LymeNet and, therefore, I posted way too much stuff - and stuff you probably have already seen.

I realize now that you meant you were knew to reading the Road Back site.

so, if some of this stuff is old hat to you, just breeze on through.

and -in you've not yet seen it, the Singleton book is very good.

hope you've got a sunny day.

-

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Lymetoo
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quote:
Originally posted by riverpatrol:
He absolutely will not prescribe prednisone. But, once a month he does give me a shot of steroids................

Since I am wary of steroids, sometimes I go every other month, but boy I sure am hurting that second month.

That's very contradictory of your dr. It's really scary too. Eventually, the steroids will stop working and the Lyme will overwhelm your body. ( or they will continue to work and Lyme will overwhelm you )

I'm sorry you're in such a position that you feel this is the best option.

I've taken steroids, but thank goodness I was diagnosed with Lyme and got off of them.

[group hug]

--------------------
--Lymetutu--
Opinions, not medical advice!

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luvs2ride
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Lily,

I have rheumatoid arthritis.

I have positive bloodwork for

Lyme, Mycoplasmas, Babesia, Ebstein Barr Virus, H. Pylori, QFever and tapeworms.

The only thing positive about all those positive bloodtests is it gives me lots of hope to one day be cured of my RA.

I found roadback immediately after getting my RA diagnosis. I was already in treatment for Lyme which doctors where calling chronic.

Frankly, I think the treatment for the lyme was effectively killing but I was not effectively detoxing the die off and the inflammation that resulted brought about the RA.

The rheumatologist screamed at me when I said I wanted to try Minocycline. He screamed for the entire visit and was beet red. I thought the man would have a heart attack he was so upset.

He doesn't believe infection causes. He thinks the lyme caused the immune system to go awry and I am stuck with it even thought the lyme is gone. Sure hope he is wrong!

For sure he is wrong about the infection being gone. He wouldn't even run the test I requested for mycoplasmas and strep. It took me a year to find another rheumatologist who believes in infectious causes. In fact, she is a member of ILADS.

She found the infections listed above. But before I met her......

I worked with an integrative doctor to help me identify other things I read could cause RA such as infected root canals, heavy metal toxicity, leaky gut.

The rheumy provided the mino 100 mg MWF and the integrative doc did all the rest using only natural means. One of the best things I received was monthly IVs of glutathione. I am trying to get approval to receive this for the rest of my life. It is essential for detoxing.

During that year I went from a high moderate (almost a severe) rating to a weak positive. The rheumy was stunned and humble enough to admit it must be working as I was nearly dormant.

It was at this time I was bit by another tick and had a severe flare up. I found the other rheumy and began seeing her.

She works much like my integrative doc in that she works to heal the body. She works like ILADS in that she will use antibiotics aggressively and she works like a rheumatologist (which she is) in that she will use the DMARDS and biologics to help control the inflammation and stop joint damage while killing the bugs.

I feel she is the best of all worlds. With her I have reached full remission. All the bugs are not gone yet and the heavy metal toxicity has to be dealt with but she says not until Babesia is gone. She says parasites must go first then the metals then the bacterias. We still have lots to do, but I enjoy a normal life with very few flareups.

I never have to take pain medicine of any kind.

pm me if you would like to chat more.

Susan

--------------------
When the Power of Love overcomes the Love of Power, there will be Peace.

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Lily
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Keebler,

You are so generous with your time. Thanks.

I probably was not clear in my post. I "tested negative for everything" had to do with before I had my Lyme diagnosis and was using local docs to figure out what was wrong.

I was CDC positive for Lyme via Quest. Then, I tested through IGeneX and was positive as well. Also, I got to see more bands [Smile]

I was negative for all of the other tests like RF, ANA, (Rheumatology) and lots of other tests by ID docs. I am usually positive for strep for some reason.

Last year, all symptoms went away after 6 weeks of treatment. I stayed on ABX. for 2 extra months.

This year,I had a relapse and now my main symptom is inflamation/rash/SED rates sky high.

My LLMD is suggesting that the infection is causing an immune response in the form of this uncontrolled inflamation. It could be the infection or the die off. Either way, my BIG issue is inflamation.

That's how I got thinking about The Road Back. They seem to get what Rheumatologists obviously do not seem to get, as a whole.

I guess I cannot figure out how they determine if it is microplasma, Lyme, or other infections causing the inflamation. How do I know that the Lyme isn't gone and some other co-infection is causing the inflamation. If it were microplasma type of infection, mono-therapy with pulsing might help. If it is Lyme, I still think the therapy needs to be mulitple ABX and changed up a lot.

I thought about seeing a local Rheumy who understands AP. Still, I wonder how far I'm going to get once I mention Lyme.

The Road Back gave some local MDs but they are acting clueless when I call and ask about AP in their practices.

I wonder what additional testing might help?

Lily

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Lymetoo
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Lily,

I think a lot of Lyme patients have strep present and don't know it.

Seems I've heard of others here over the years who found that strep was a problem and was causing a high sed rate and/or inflammation.

Do some research here [see "search" above] and by googlin it. You may find some info that will be helpful!!

--------------------
--Lymetutu--
Opinions, not medical advice!

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Lily
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Susan,

That's all quite intersting. I guess I've been wondering if a Rheumy that really understood Lyme or infectious causes woul be helpful.

As of a year ago, when I did testing, there were no signs of RA in my blood. By that, I mean the RF. No ANA either.

My SED rate is always around 100 now. So, LLMD feels that there is something going on. He talked about PMR, but it does not fit.

Each time I start a new ABX, I herx and inflame more.

Are the tests for all of the "bugs" that you have something I should ask my LLMD to run? Are they ones I could run through Quest (not Lyme) or are they the expensive, specialty variety?

Who is your LLMD and are there other Rheumys that are LLMDs as well?

Thanks!

Lily

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Lily
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Lymetoo,

I've been "google - in". Yes, there is definitiely some sort of strep connection.

Thanks!

Now, to get a script to recheck these from last year [Smile]

Lily

Posts: 219 | From Florida | Registered: Sep 2007  |  IP: Logged | Report this post to a Moderator
CherylSue
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I went to a naturpathic doctor yesterday in Chicagoland. She did a blood micropscopy and analysis. In addition to Lyme, I have babesia and mycoplasma. You can see the infected cells from the blood cell which are projected on a TV screen. She recorded on a VHS tape for me.

CherylSue

Posts: 1954 | From Illinois | Registered: Aug 2007  |  IP: Logged | Report this post to a Moderator
   

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