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» LymeNet Flash » Questions and Discussion » Medical Questions » Sickest I have Ever Been -- Scared

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Author Topic: Sickest I have Ever Been -- Scared
LymeCFIDSMCS
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I spent 4 1/2 days at the hospital last month, and since I got home I can't recover from the hospital stay and am much sicker than I have ever been. Although the hospital actually took great strides to accommodate my MCS (they have a fragrance free staff policy now, miraculously, and they were really trying to be helpful), I have severe MCS and CFIDS and really can't be around any scents ever, or that much stimulation ever.

I'm a total invalid since I got home. I was already pretty bedbound but now I can't reach to the foot of my bed to grab something without a major relapse. I'm totally immobilized except for trips to the bathroom -- can't bathe, barely have the energy to eat, feel like i'm dying 24/7.

I am trying to figure out what happened exactly. I was taking Mepron in the months before this all went down, and it was giving me extreme anxiety and insomnia. I feel neurologically jacked up. It also seemed to be helping with some babs symptoms, such as overwhelming tiredness and some of my cognitive problems. However it was messing me up so much that I had begun tapering back on it a little before the hospital and that was starting to make me feel BETTER, not worse.

Right before the hospital visit there was a horrendous ice storm here and I lost power for three days. That was the event that pushed me over the edge so that I had to be hospitalized. It's a long story but that's what finally did me in.

However, I feel like the Mepron/babesia might have some involvement here as I'm now having the worst drenching night sweats of my life. I wake up two or three times a night absolutely drenched in sweat. I had drenching night sweats in the beginning while herxing on Mepron but this is bad.

I also felt as if my bartonella was getting worse again while I was on Mepron, though I continued with Rifampin (which I'm taking for bart) and Houttuynia (bart herb) the whole time and was careful to take Rifampin and Mepron apart from each other. I also wonder if I'm having a major bart relapse though, and if the sweats are actually bart.

Does anyone have any thoughts? The infectious disease doc at the hospital was totally anti-Lyme (I posted about this before) so I know he won't be helpful. He was insistent I had no infections at all as my white blood cell counts were normal, I had no fever, etc. I was having the night sweats at the hospital too -- sure seems like infection to me!

This is also why I wonder about bart though -- doesn't bart switch off the immune system? Of course, my immune system was already impaired with CFIDS.

Does anyone have any thoughts to pull me back from the edge? My LLMD feels strongly I should stay off of Mepron and I do too. I'm taking artemesia for babs which I was taking all along.

I also wonder if I developed some kind of super babs as I could not take Biaxin or Zithro along with the Mepron due to Long QT. I was taking Bicillin as well though, and the Artemesia.

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nenet
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Hi LymeCFIDSMCS,

I am really sorry to hear what suffering you have been going through, and I hope that you will return to better health very soon. I'm sorry that I can't speak to your med concerns regarding babesia and bart, as I haven't been on them (yet), and I am far from an expert.

I am wondering about how you are detoxing though, considering your hefty problems with MCS and all the drugs you have been on, as well as the Houttuynia and Artemesia. All of these will be causing die-off and adding to your already toxic state, as I am sure you are aware.

May I ask what your detox regimen is and how long you have been doing it?

All I can say from my limited perspective, is if what you described were my state, I would probably be seriously considering a supportive and detox regimen, paring down my meds, and keeping it as simple and low-variable as possible, as in using whole herbs, vs. capsules from a bottle, etc. All with an LLMD and GP's knowledge and approval, of course [Smile]

I can give you my personal detox tea that helps me a lot, but I can't guarantee it will help you with all the meds and herbs you are on. I am currently only able to tolerate 1/3 a 500mg Ceftin pill every other day right now.

I'm sorry I can't be of any more help right now, I am not doing so great today and posting is taking a lot out of me. I just wanted you to know that someone cares and wants to help, and I am sure more will be around to give their support.

Hopefully I can maybe post more later, but I don't want to take up too much of your time since I am not able to answer your med questions very well or at all.

You have my best wishes.

--------------------
Dr. C's Western Blot Explanation

Lymenet Success Stories

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TO LIFE
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Make a list of every SX., make sure it's dated. MAKE SURE YOU HAVE A COPY FOR YOURSELF AS WELL.

All MD"S have to dot their i's and cross their t's.

In the meantime to not push yourself, or over do it, this can lead to serious heart damage.

I want to PM my phone number to you. But I do not know how to use the PM.

HANG IN THEIR. ROZ

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LymeCFIDSMCS
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Thank you so much for these responses and the support.

Detox: I am taking alpha-lipoic acid, milk thistle, yellow dock, and a kidney detox blend. I was doing regular coffee enemas and detox baths before I got so sick (can't bathe at all now). Also red root tincture. I would welcome any more detox tips.

And good idea about the symptom list, keeping things organized, etc. Thank you.

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TO LIFE
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What exactly are your SX.
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Hi Their,

I BELIEVE You. Where are the MD's for this forum? You are in a sink or swim issue. I have no clue on herbs, but if I was you I would drink alot of water and get them out of my system.

Much Love. Roz

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oxygenbabe
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Were you without heat and hot water during the power outtage?

You posted recently that a year of meds had improved you so you could handle the hospital.

Frankly, what LLMD is putting you on both strong drugs and mixing herbs as well??? Who *knows* how they'd interact in the liver and kidney of a healthy person much less a CFIDS MCS person. This does not seem like safe medicine to me at all, what kind of doctor is this???

If on abx stick to those. Don't add in all these herbs. Each one requires metabolizing and detoxifing and their side effects are not nearly as well studied.

If using herbs do so under care of an herbalist who is experienced.

In your place I would go off most stuff and let the body rest, rest, rest, keep warm, rest in bed, and take lots of good nutrition, soups, green juices, etc. If you can get to a mild hyperbaric chamber do some sessions in there to detoxify or even just get an Rx for oxygen at home.

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nenet
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LymeCFIDSMCS Quote:
Detox: I am taking alpha-lipoic acid, milk thistle, yellow dock, and a kidney detox blend. I was doing regular coffee enemas and detox baths before I got so sick (can't bathe at all now). Also red root tincture. I would welcome any more detox tips.
__________________________________________________

I have a couple of suggestions, but they are only based on my own experience and what research I and my husband have done over the years in both Lyme and herbs.

First of all - I would stop taking your current list of herbs, blends, tinctures, detox baths, coffee enemas, and supplements (except for any minerals or vitamins you need to be taking according to your doctor). Depending on what is in your herbal supplements, you might want to taper off of them slowly.

Second, I would discuss with your LLMD removing all but the most essential meds for a cooling down period until you can detoxify, and pare down to the minimum doseage level required according to your doctor.

Third, (with your doctor's approval only!) I would have someone help you make a simple detox tea like the one I use, and use it every day without fail (unless of course it doesn't agree with you for some reason).

My reasoning:
Many of the items you are using for detox have ingredients that either directly or indirectly lead to pathogen die-off, causing an exacerbated toxic load. Many detox supplements contain herbs that are anti-bacterial, anti-viral, and anti-microbial/fungal etc.

Also, many of the herbs, like milk thistle, can be too strong for our system, and relaly shouldnt be taken on a regular basis even in the most healthy individual.

They stimulate and boost the activity of your organs, and therefore stress them if they are dealing with a large toxin load. Also, the more they work, the more your body will push toxins through.

It will also stimlate your body to attack more Lyme, and cause more die-off. Your strategy should probably be "slow and steady wins the race."

If you have MCS you are in a very toxic state already - your body has so many toxins it can't deal with any more toxins from the environment, much less those you apply yourself.

You need to help your body back into a state where it can cope with removing toxins on its own, and actually use the medicines (herbal and or pharmaceutical) that you take.

One thing I have found to be very valuable for me (in my opinion of course) is that lessening variables is very very useful. The fewer things you take in, the less chance something you are taking will be a risk.

You will be able to determine the offender or the useless much more easily if you only add one thing at a time, with as much time between additions as possible. 3-6 months is a good way to get a baseline for how I am responding, but we are all different.

Pay careful attention to contraindications between herbs themselves, and between herbs and pharmaceuticals. Many doctors are completely unaware of what herbs and supplements can do.

I want to go into more detail about the herbs you are taking and why they may be hurting you in your current state, but I will have to come back later.

If you are interested in the detox tea I use, I will post the recipe below. Hopefully someone can help you and make it for you.

Lastly, I am only another Lymie, like you, and dontt have the answers. This is all just my personal opinion and I don't claim to be right about anything, but I have tried to learn from others and have done a lot of herbal research.

Please use your own good judgement and speak with your doctor to make sure you are in agreement on your regimen, whatever it is, and that you keep reassessing its value to you, and making careful changes as needed.

And like someone else said, keep very good notes - that is SO hard to do, but I am always grateful to myself when I manage to do it.

I will copy and paste the recipe from an earlier post. Please let me know if you have any questions. I wish you the best. Please take it easy and try to remove as much strain from your system as possible.

**************************************************
Ok, here is my husband's recipe for my Lyme Detox Tea:

Per 1 quart of water (preferably bottled spring water or at least filtered), boil in pot on stove:

3 Tblsp Sarsaparilla root (dry, chopped)
2 Tblsp Chamomile (dry, chopped)
1 Tblsp Wintergreen (dry, chopped)

for 5 minutes. Then let steep for 1 hour or more - strain through a clean cheesecloth laid across the inside of a sieve strainer.

Drink 1/2 cup mixed with additional 1/2 cup water 2x per day (heat on stove to normal hot tea drinking temp).

You can make a week's worth (7 cups or so) and store in sealed container in fridge.

Your mileage may vary, but in my experience, this has been a very soothing and helpful tea. I have noticed a huge difference in my regular and herxing symptoms when I have missed a dose or two.

If you are interested in using this tea or these herbs, I would highly recommend reading up on them (Buhner's "Healing Lyme" is a good printed resource, and there are many herb research sites online), and talking with your doctor, to make sure this is right for you.

I hope this is helpful to anyone who decides to try it. I have been using this tea every day for over 6 months.


Caveat: I am not a doctor or a medical professional, and this is not offered as medical advice.
**************************************************

--------------------
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Lymenet Success Stories

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Medical & Scientific Literature on Lyme

"Long-Term Antibiotic Therapy Improves Persistent Symptoms Associated with Lyme Disease"

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karatelady
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Try to drink as much water as you can with fresh lemons (I add Stevia to mine). The lemons help alkaline the body plus they are a great detoxifier.

I cut a lemon in forths and try to add some of the white part of the rind. If you feel too sick to do all that, just squeeze the lemon in your glass.

Also, have you tried charcoal to clean up the gut? Some say its best to take it away from other meds.

Hope you feel better soon.

Sandy

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seibertneurolyme
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I don't agree with Oxygen babe regarding the herbs. Herbs are the only way hubby can tolerate therapeutic doses of antibiotics. He does consult with a herbalist though.

However, he is on all the herbs and supplements you are taking plus more and has had no problem with taking them along with multiple antibiotics.

The stuff you are taking is mostly supportive and not killing and unless you are on super high doses there are very few side effects from those herbs listed.

Hubby's LLMD told him night sweats were babs and daytime sweats were more likely bart -- if that helps any.

I haven't had a chance to read all the other comments yet, but my guess is that the art is not working for the babs. You could try adding something simple like turmeric or neem or be more aggressive and add in cryptolepis or elecampane.

I am almost convinced that cryptolepsis works on both babs, bart and the mystery bug as well. Woodland Essence has extended their 10% off sale through January 30th on liquid herbal extracts.

Will try to come back to this thread if I can think of anything else to suggest.

Hang in there.

Bea Seibert

P.S. Are you still having fevers or just the night sweats?

As for the HH -- yes that is supposed to work on Bart. What I have been doing is pulsing that for hubby. He takes 2 or 3 capsules for a couple of weeks and then takes a week or two off.

Initially this herb seemed somewhat helpful, but since hubby crashed back in October I don't think it is doing too much. I personally think his bugs may have become resistant to this herb. He initally took it for 2 or 3 months straight and then we ran out and restarted it a few days before he crashed.

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oxygenbabe
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Bea, CFIDS/MCS is a whole different ball of wax which I know from firsthand experience. Your hubby is very sick but he seems to tolerate many and mutiple drugs even five at once. CFIDS/MCS *cannot* do that without risking their life further. Houttynia and artemisinin are NOT benign "supportive" herbs and frankly I can't and never have been able to tolerate milk thistle! Nobody knows how all these drugs and herbs interact and for a CFIDS/MCS person this is not a good idea at all.

Also this story just rings so familiar to me. CFIDS/MCS people who go on these major drugs often end up worse off in the end. Their systems are fragile and brittle and supportive measures and gentle approaches are best. I will never forget how Artist Di was saved by very low dose steroids and then IV doxy TWENTY MILLIGRAMS twice a week. Eventually I believe she got up to 60 or 80.

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bettyg
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i sent instructions to life on how she can pm the sender [Smile]


poster, so sorry for what you are going thru now [group hug] [kiss]

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seibertneurolyme
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LymeCFIDSMCS,

I certainly didn't mean to imply that HH or art were not strong herbs. I was referring to the others you listed.

However, if you were tolerating these herbs prior to your hospital stay, then it seems logical to me that the problem is not with the herbs.

With your serious heart condition, you are obviuously between a rock and a hard place.

I think the best idea might be to back up and concentrate on just one infection at a time. Since babesia symptoms seem to be the worst, maybe work on that infeection for now and stop the Rifampin and HH.

Rifampin interferes with liver enzymes and can be very hard to tolerate.

One idea I thought of is to try either Flagyl or Alinia at low doses to knock the babs down a little. Hubby could only tolerate 1/4 of a Flagyl when he first tried it. He took that for about 2 weeks and his headaches and eye pain went away back in 2004. Then he moved on to 4 months of quinine and clindamycin. I know that is probably not an option for you though.

According to hubby's LLMD Alinia is Flagyl plus one other ingredient. Hubby may have finally gotten rid of his babs. He took 1 Alinia daily for 4 months and then 2 daily for an additional 4 months. Added in other things along the way.

Just an idea that might work.

This is not medical advice, just my opinion based on hubby's experiences.

Bea Seibert

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glm1111
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OMG...I feel soooo bad for you. I had severe MCS and CFSIDS when I collapsed in 1983. What meds did they give you while you were in the hospital? Any steroids?


It sounds like your system can't tolerate much except nourishment. Is there anyone that can juice for you?


I used to drink a lot of plain Kefir every day and it helped stabilize and heal me. Also some healing foods for inflammation.


Taking anything like herbs or other meds probably would be way to strong for your liver and nervous system. (just my opinion)


There is a book "Foods That Heal" If I can think of anything else I 'll come back. I think you have gotten some similiar responses here and some good suggestions.


Hope this helps some, [group hug]


Gael

--------------------
PARASITES/WORMS ARE NOW
RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS*

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ArtistDi
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I see you are from MA, and I am not sure if you
are from the Western part or Eastern. If you are close to Northampton, the Northampton Wellness Clinic deals with mcs. I became very ill after Mepron with other drugs. I had to slowly and lower dose--take IV nutrients. Also,
IV glutathione can help detox the liver.

You can try to take TwinLabs glutathione and put
some under your tongue for 1 minute to dissolve.

Milk thistle tea is good.

If you can do sauna detox, that would be great,
and I learned that Groton Wellness Center will
be installing an infrared sauna. This is also
in Groton, MA.

You need to detox slowly also, too fast will make
you sicker. Rest, and if you can take a shot of
B 12 or magnesium that can help as well.

I think the gut needs a rest. Fresh air when you can. The mcs is a bad ride, I know.

Much better if I do the IV route.

Artist

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LymeCFIDSMCS
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I tried to post earlier but couldn't -- so this is a test.
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polar blast
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stop the art...
stop the rifampin...
these are really heavy hitters...
you need to detox..
i would consider coq10 to detox..

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LymeCFIDSMCS
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Oh phew -- glad that went through. It told me earlier I was banned but I guess it was a fluke.

Thanks so much for all of these suggestions.

Just a few answers:

-- Lemon juice and water -- great idea, I forgot about that one

-- I have sarsparilla and chamomile tinctures here by my bed and was thinking of taking those, so that seems along the lines of the detox tea -- do you think putting those in hot water would have a similar effect? (don't have any wintergreen but can try to get some)

-- I was wondering about bart w/ Houttuynia becoming resistant, Bea, so that's interesting. Also interesting about cryptoleptis possibly working on bart. I took cryptoleptis over a year ago when I first got babs, but since Buhner recommends doing it short-term I stopped. Do you think a second round is okay?

-- If I can get anyone to juice for me, do you have any juicing suggestions for gentle rebuilding/not harsh juices?

-- Yes, I lost heat/light in the storm: had heat erratically with borrowed generator but it's a long story

-- I have glutathione I can nebulize but it might be too much right now

On the sensitivity scale, I'm kind of weird: sometimes I can tolerate more than most sensitive people, sometimes hardly anything. It really depends on the substance. For example, I had some of the most adverse reactions EVER to homeopathic remedies.

Keep the ideas coming -- sorry if my reply isn't totally thorough but I can only write short bits right now. I really appreciate all of the support.

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polar blast
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again stop the art..dont take it again..
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heiwalove
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i'm so so sorry to read this. i didn't realize things were this bad right now (or maybe i was just in denial?). sending love and gentle hugs across the miles..

for what it's worth, i agree with those who say your system sounds like it's completely overloaded. i wonder if maybe you were exposed to something in the hospital -- chemical or infectious or otherwise -- that contributed to your worsening condition post-hospital stay?

anyway, maybe lay off the killers (abx, anti-bacterial herbs) for awhile and focus entirely on detox, or at least lessen the dose of the anti-bacterials. lemon water is great. chlorella might be helpful, if you have a clean source. charcoal taken away from all other meds/herbs and food. apple pectin (grate up an apple, wait till it browns). rest, rest, rest, nourishment. do you have someone there who can help with meals, nourishing soups, juices, etc? i know how impossible it is to cook for yourself when you feel so devastatingly ill.

i just googled and found this site for gentle detox recipes.. i haven't tried them myself but thought they might be of interest nonetheless:

http://www.kripalu.org/article/373/

i hope so much that you feel better soon. please let me know if there's anything at all i can do from too-far-away.

xo.

--------------------
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luvs2ride
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LymeCFIDSMCS

Slow down and listen carefully to the advice about food.

You are detoxing too fast. Not only do you detox bad stuff but you also detox nutrients your body needs.

All the drugs you take deplete your body of the nutrients it needs to function. You don't want to just function, you want to OPTIMALLY function so your BODY FIGHTS THE FIGHT. Your body is what will save you.

Nutritional healing must be practiced by everyone who is sick in order to heal. Nutritional healing is the foundatation. All your medicines will work OPTIMALLY if your body is FUNCTIONING OPTIMALLY.

I bet you are deplete in so many essential nutrients.

Food and supplementation need to become the absolute focus of your thinking.

Find a medical doctor trained in nutritional healing to help you. I only work with Medical Doctors who have advanced their training into CAM medicine. That way I get the very best of both worlds.

www.acam.org

www.functionalmedicine.org

are two organizations that train medical doctors in functional medicine.

If you are lucky, you will find an LLMD like mine who has expanded their training into nutritional healing. I do believe more and more LLMDs are going this way. If not, use two doctors. Your LLMD for infections and a CAM doctor to heal your body.

I have gone from totally disabled to 100% functional. It only took 6 mths to get me up and walking and working. I am now 3 yrs into treatment and the last 1 1/2 yrs has been mostly painfree, symptom free and fully functioning.

I am stronger today than ever. Nutritional healing is the foundation upon which you will be cured and it must be followed for life.

It takes a longtime to repair and replace all the damaged cells and DNA. It also requires removing the pathogens, toxins, parasites that are making you sick.

There is no magic pill. You must become part of your healing process. It can be done.

Luvs

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

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oxygenbabe
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My green juice recipe is:
Organic dandelion, organic spinach, organic parsley, organic romaine, organic cucumber, and one whole lemon (without the rind).

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heiwalove
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Member # 6467

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up for more suggestions/help..

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http://www.myspace.com/violinexplosion

Posts: 1848 | From seattle, wa | Registered: Nov 2004  |  IP: Logged | Report this post to a Moderator
WeRAll1
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Visualize being in the middle... and everyone Hugging you.

I hope it helps..  -

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