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» LymeNet Flash » Questions and Discussion » Medical Questions » Almost Nothing Has Worked (Page 5)

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Author Topic: Almost Nothing Has Worked
BoxerMom
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Metallic - I am so happy for you!

Only on Lymenet do we congratulate someone for identifying their potentially life-threatening parasitic infection. And that's why we're so great!

I continue to rule in/rule out various tick-borne infections. The fun just never stops!

I plan to try Ivermectin on my next round, as I am currently herxing my face off on antibiotics and antiparasitic herbs.

I can't wait to hear how you do on your new program.

Again, congratulations. Your persistence has paid off.

I hope you find much healing in your very near future!!

BoxerMom

--------------------
 - Must...find...BRAIN!!!

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Haley
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Oh and MB. You should seriously write a book with the kind of notes you take.
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jackie51
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Great news. I hope you continue to do well.
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Abxnomore
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All I can say is WOW. I wish you the best with your new protocol. I hope this is the final link towards moving toward your recovery.

[group hug]

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Tammy N.
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MB - I have been thinking of you! This is great news to hear!

I felt MUCH better after being on Ivermectin for just 2 weeks. Maybe related to this infection?? Now I want to be tested also.

Please keep us posted. Routing for you!
Tammy

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nefferdun
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That is great news. Are you following Dr F's diet suggestions? I am on and off it myself but think it should be the next move for me.

I took ivermectrin horse wormer once and had no reaction at all. Does that mean anything? I squirted the amount for my weight on a cracker and ate it - it was so awful. No wonder my horses hate it so much.

--------------------
old joke: idiopathic means the patient is pathological and the the doctor is an idiot

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CD57
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Neff -- how long did you give it? Looks like it takes awhile.
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sparkle7
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It took me a few days before I had a cleansing reaction to the ivermectin. It tastes awful. I used to chase it with some yogurt & something sweet.

It great if you can do this with an MD & take the compounded version - but I did the horse paste & it went well. I took it for about a month off & on as per my dowsing.

I also added in pyrantel pamoate & praziquantel. I don't know if I'm "done" with parasites but I have to deal with yeast now. It might be the order of things - I don't know?

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sparkle7
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PS - Yes, I believe it's the drug in Heartguard.
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jdp710
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A long video but interesting to watch on her experience with FL1953.

http://www.youtube.com/watch?v=5bYdFoqQw18

In short, and if you fast forward to 1 hour in it appears cholestyramine was eventually taken.

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Dekrator48
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Thanks for the link, jdp710.

I watched the entire youtube video.

Wow! She (Christa) suffered so much....seizures, terrible headaches, intractable pain, night sweats, passing out, nausea and vomiting,etc.

Her husband (Justin) never thought once of abandoning her. Neither of them ever questioned their faith.

Their families stuck by them. She was misdiagnosed by over 40 Dr's and some told her (of course) that her symptoms were psychological in origin.

She treated for Lyme for a couple years with little improvement. Then she found out that she had Protomyxozoa Rheumatica (FL 1953).

She got C-Diff and had to stop treatment for awhile. She finally treated the FL1953 but wasn't getting better as fast as expected.

Finally her family flew her LLND in to see her because she could not get to him!!!!!

He started her on what looked like cholestyramine and she started to get better much faster.

That would make a great made-for-tv movie!

--------------------
The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.

"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11

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tickbitt
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This has probably made the rounds here already, but I think it's a fair addition to this thread....

Eva Sapi tested the effectiveness of banderol + samento in the lab and found them effective at breaking down biofilms.

http://www.townsendletter.com/July2010/sapi0710.html

I had a miserable 2011. I heard about the research in November. In early December I tried it, and had a horrible 3 week herx. Once through that I felt better than I had in all of 2011. I've since added nattokinase and serrapeptase to try and break the biofilms some more.

I'd love to see Timothy Lu's biofilm therapy applied to lymies, but it hasn't happened yet:(

MB, I wasn't surprised that rifing didn't get you well and I'm delighted to hear that you may have, after two decades, found the key to your illness. An untreated disease that builds strong biofilms explains everything you've gone through.

Thanks to your posts here, your hell may help others escape the same fate. Please keep us informed; I've been following your illness for years now.

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tickled1
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Does Protomyxoa come from a tick?
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manybites
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Dr Fry found it in mousquitos as well.
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METALLlC BLUE
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A quick response. I'm at 1mg everyday, and every 3rd day 2mg. The final outcome is to reach 3mg, but the problem with my case is this infection has had a lifetime to build up biofilm and to establish itself, so the doctor told me to not expect a quick recovery.

He did not recommend Dr. F's diet, although he is in close contact with Dr. F, Dr. H in NY, Dr. J in CT, and Dr. K in Washington.

He also stated that a single patient of his is using Rife and experimenting with frequencies on a coil machine outside the typical range. He has the same infection and did not respond to other therapies but now is substantially improving on a particular frequency that he has not officially released. He told me "If you ask me, I can tell you what the frequency is when it's given to me." In other words, I can't recommend it or tell you how to do it, or anything else.

So, we "might" have a possible option in the Rife field for treating this parasite "maybe."

I'll get the info to everyone the moment I get it and start experimenting.

Yes, it comes from Ticks and probably other vectors, but I personally do not know. Manybites above says Dr. F found it in pesky skeeters.

--------------------
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.

E-mail: [email protected]

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dal123
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Who is dr f? Plse pm me
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Tonglen
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MB, really appreciate the update and hope you feel better soon! Curious, since you tested positive for lyme and bartonella as well, do those get treated after FL 1953 or will you fold in additional treatments?
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Tammy N.
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MB, care to give us an update when you have a moment?

Wondering how you're making out.

Wishing you well!

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Tammy N.
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Up:)
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Haley
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I'm wondering myself. Where are you MB?
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METALLlC BLUE
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I haven't responded or been on Lymenet because I don't have any positive news to report.

The only information I have is that the doctor began with Ivermectin, the results were disappointing combined with Artemisinin Essentials. The AE definitely woke up a parasite of some kind (Probably Babesia). I went from no night sweats to full blown night sweats and then it vanished after a few days. We then tried Alina combined with the AE and the Alina then caused the same pattern. Night and day sweats, except the sweats didn't go away after a week like the AE. The Alina caused them to worsen and then my heart started hurting during workouts. Then it got worse and I started getting exercise induced fatigue. You all are familiar with it. When you move around too much or push, you feel like you're going to pass out and die? That's the exercise induced fatigue.

Also, breathing became more difficult, like the sweats, fatigue and heart/chest pain. My doctor suspects we're ****ing off the Babesia, which I've treated extensively. When I say extensive, I mean years and years of anti-babesia therapy. Nothing seems to really end this infection, it just gets suppressed, or at least the symptoms do somewhat. My doctor doesn't feel distressed about options like my other doctors did. Perhaps that is because my current doctor is up to date on the cutting edge data and willing to experiment with my consent. We're doing whatever it takes to try to make a dent.

So that is where I am. I wish I had better news.

--------------------
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.

E-mail: [email protected]

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nonna05
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I'm sorry to read you didn't get further along yet..
You mentioned before that you were at 45-50%.

Is that still the case?

You mentioned exercise like it's something you do often,, Does that also mean you get out and about OK?

I ask because I am not able to push through to do much at all and 50% would be a God send right now..
I of course am shooting for 100%..
So maybe , compared to some I'm at 40% (sure doesn't feel like it , sitting,laying in my room 90% of the time) and you're at 70%........
The symptom's and marker's to this illness are so crazy.......

So hitting the Parasites didn't do much...
Since you look into so many combo's have you tried GSE with anything??

Was the Bactrim incident a Herx or Allergy reation...
I ask because After being on rifampin a long time and trying it again,,I got a reaction,

So they said allergic,

This didn't feel right so I tried it back at my original dose and my original manufacturer.. Didn't have a proplem...Thay just say I'm past that now..on to other treatment's

Take care..


This new LLMD ,,what's his plan>??

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sixgoofykids
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Hey, MB, thanks for popping in, sorry you're not doing better.

When I used photons to hit the Lyme, afterward the babesia did flare up. I took something (tonic water with natural quinine in it) to help with the symptoms, but I believe it was the strength of my own immune system that finally got the babesia.

It did flare badly right before it let go. It's like it had one last hurrah.

I HOPE this is what you're experiencing. EVERY SYMPTOM with EVERY INFECTION or even stuff I didn't know about flared as I retraced/healed.

Since you used photons and it's babesia that's flaring, I can't help but wonder if it's a similar phenomenon. Keep working on getting your BODY stronger.

I hope something works soon!

--------------------
sixgoofykids.blogspot.com

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tickled1
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So sorry to hear that you haven't made more progress. Hopefully what Six said is true and this is just a last hurrah.
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tickled1
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METALLIC, you mailbox is full.
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METALLlC BLUE
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Alright, more news for everyone:

I've continued the same protocol since you last heard from me, except we added Beyond Balance CLAK Detox, and Beyond Balance MCBABS2, both of which are drops that I take 20 each x 3 per day.

I've learned a few tricks that may work for other patients since then.

The biggest one: Ultrama (Tramadol) when mixed with certain drugs appears to enhance their ability to work, or it itself enhances sleep quality. I suspect it's synergistic effect comes from a combination of Ativan @ 2mg with 50mg of Ultram(Tramadol) The difference between sleep quality was night and day. I'm now getting much more restful sleep, while before, Ambien, Ativan, Melatonin, stopped working - and even still the quality wasn't good as most of you recall from this thread. It "helped" but barely. Added the:

Marijuana significantly improved the combination (smoked), about 5-8 tokes from a pipe. It also took away pain, decreased nausea, alleviated depression and improved sleep quality. In an attempt to try to find something safer for my lungs, I tried (completely by chance) the Ultram. Clearly pot won't work for everyone and can cause the same paradoxical effects as other drugs/or not work at all/or has side effects that are unpleasant and can happen even in healthy people i.e. (paranoia, respiratory issues, anxiety, etc)

My function increased from 35-40 up to 50% on better days. This is almost near where I was in 2005 thanks to IV Vancomycin. I believe the combination of symptomatic treatment is primarily holding symptoms at bay. Sleep makes a big difference in terms of immune function, so my immune system is far more relaxed during the day up until about 6-9 p.m. when the symptoms return gradually until they become crippling, causing pain, headaches, severe neurological/psychiatric changes. I absolutely must go to bed no later than 12, but 9-10 is optimal still.

Additional news, and this applies to everyone who does treatment daily without breaks and feels a little better but never quite seems to get passed the hump.

Breaks! Take breaks, such as 1 week on, 1 week off, or something that your body responds to. If you've been treating for awhile you shouldn't get sick immediately, but if you do, it's because you're not far enough long in treatment to take breaks. Of course you should always slow down the dose or stop for a day or even a week if you have Herxheimer reactions that threaten to send you to the ER. The ER is unnecessary when a Herxheimer reaction is the cause. Don't "push" through it when it gets severe, just stop. But of course, speak to your doctor about this. Beware that many doctors say "not" to do this - and to simply push through. I disagree, and you know your body - so you decide whether the ER trip is worth it verse just a few days off.

Since I started taking breaks my behavior has changed greatly. I am more stable, not as moody. However towards the end of the week after being on AE, Alina, and the Beyond Balance Drops, I get ****y, achey, sweats at night, and other typical herxheimer like symptoms. They last usually from Thursday until the following week on Tuesday/Wednesay (my off week). So even half of my off week is consumed with recovery, which is frustrating if you're trying to have a life. I'm considering asking my doctor to give me even more breaks between treatments so I can live and not cause my personal relationships to explode - which they do, thanks to the isolation, irritability and other "mean" attitudes I get when a Herxheimer hits.

Summing it all up: So these are the basics: Pulse treatment, Ultrama/Tramadol induces high quality sleep in conjunction with Ativan or probably any Benzo (I'm presuming, but not positive), and avoid ER trips caused by Herxheimer reactions at all cost. You know your body, don't get into the danger zone or try to push through.


I also had hammered my Babesia and Bartonella previously with very long durations, so the Rife didn't really hit them much either. My big problem seems to be tied to that protomyxoa rheumatica that Dr. Fry discovered. We continue to treat it, but it's had 25-30 years to form biofilms, so breaking them down will probably take another 5-15 years, and if I go at high dose I become severely suicidal, physically disabled and close to going to the ER, so we can't go after it hard. The Herxheimer is too strong.

If anyone has questions about this post or anything else, you may also contact me there. I don't come to Lymenet often except for educational resources. There isn't much left to learn so I'm on facebook most of the time with my other Lyme pals. Love all you guys for all the support and information you've shared with me over the years.

Take care all,
Michael

** Marketing parts removed **

[ 12-10-2012, 04:04 PM: Message edited by: sixgoofykids ]

--------------------
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.

E-mail: [email protected]

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faithful777
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Glad those specific drugs worked for you. The rife machine could help you if you relapse and they are good for other illnesses. I wouldn't part with mine.

Tramadol or Ultram does not give the same results for everyone as it did for you. I am glad it solved a problem for you.

For me and others I know, insomnia was a side effect of that drug. Also, even though it is a synthetic narcotic, it can be addicting.

Be careful when you want to get off and titrate down the dose slowly. No one likes those creepy crawly feelings of drug withdrawal.

--------------------
Faithful

Just sharing my experience, I am not a doctor.

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map1131
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MB, so good to read you're seeing improvement.

I too suggest you keep that rife machine. You never know when it could come in handy down the road. I use my for colds, flu, uti, detox the little things that come up in health tx.

Pam

--------------------
"Never, never, never, never, never give up" Winston Churchill

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METALLlC BLUE
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Update: Ultram wore off after one month of use, back to not sleeping well. Marijauna still helps with falling asleep but the quality is not sufficient for proper function.

Alinia did not change the outcome of my symptoms. Artimisinin Essentials, like Alinia caused die off, but again never resulted in changes in symptoms.

I'm back to where I started, 35-50% function, with my baseline around 35% mostly.

We're re-running almost every single test all at once, and I have a sleep study coming up. We're now considering, for the first time in years, using IV antibiotics.

Personally I think it was a very bad decision for my LLMD's early on to not begin with IV, as it ended up being the only thing that really helped a lot in a short period of time. IV Vancomycin.

We tried Cucumin for symptom relief, etc, we tried GABA pharmaceutical grade, and Glutamine for digetive issues - nothing improved the symptoms.

After 30 treatments with the Coil and about 100 treatments with the Plasam Rife Labs machine, no results were seen. Reactions to treatment and all frequencies resulted in no progress.

As far as everything else, the Ativan is no longer effective and I'm lowering the dose gradually without too much suffering.

Sorry I don't have better news.

--------------------
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.

E-mail: [email protected]

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Tammy N.
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MB -- so sorry to hear this news.

You are so smart and dedicated....which leads me to believe that one day you will conquer. My sincere hope is that it will be in the near future.

Sending the best of thoughts your way.

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Jane2904
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Metallic,

So sorry to hear the updated news.

I second what Tammy wrote.

If you do go the IV route, I hope it brings you to recovery.

My best to you.

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annxyzz
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Just a thought, but I am trying sovereign silver
(nano colloidal) and having a monster herx . I can only toolerate 1/2 tsp with my herbs ( I rotate them) and have been on it a month.
I can not prove it , but my instincts lean toard believeing that nano silver can kill almost anything .
I read posts at different boards that indicated people with coinfections got their lives back to a more normal state , like 8man12 , who is a member here .

The effect of silver shocked me by the third day . I am going to continue and then add enzymes for biofilm - like serra peptase . I tried it and it was also extremely potent . It works and was almost scary for me. I will slowly add it again when I get stronger .

I wish you the best !

--------------------
annxyzz

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tickled1
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Blue,

I'm not sure if I've asked you this before but have you ever been screened for H. Pylori? With all your GI issues and the fact that Vanco has worked for you in the past I think it could be a factor.

It is for me and I've been doing some reading on how bad it can really mess someone up. It can cause neuro issues amongst many other things.

After all the abx I've done I hadn't done Flagyl till last fall (for something non Lyme related) and it is the first time I felt normal in years. The effect has slowly worn off though but I only took it for 10 days and plan to take it again.

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oxygenbabe
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Metallic--what about HCL to disrupt biofilms?
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glm1111
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MB,

Have you considered the full Dr. K. antiparasitic protocol and then doing antiparasitic herbs and salt/c in between? Just thinking you might have the Filarial worm co-infection that needs aggressive therapy.

Gael

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

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jupiter76
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I want to ad that the girl in the video above also took alinia during this three months together with cholestyrammine.
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sparkle7
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All the best to you MB. We all deserve better than to go through dealing with this rotten illness - whatever it may be.

Sometimes, you have to take a rest from trying to fight it & just try to do the best to maintain yourself. I hope something will come along to heal all of us who are suffering.

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adamoo
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MB wrote: "After 30 treatments with the Coil and about 100 treatments with the Plasam Rife Labs machine, no results were seen. Reactions to treatment and all frequencies resulted in no progress."

Could you tell something more about this?
How long 30 treatments with Coil last?
Did you have reactions after coiling sessions?

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Nula
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Metallic Blue, are you still around? If so, how are you?

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I appreciate all your replies. If it takes me a while to respond, it is either because I'm too sick or because I am unable to log in. From European servers, Lymenet is very frequently inaccessible for days at a time ...

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bluelyme
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Did you try emailing him?...im curious too, mb had resolve dicipline and organization one could tell from his writings...i had stumbled upon this thread ..i may have to try new things as bvt is getting harder..has any one come up with a frequency for proto?

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Blue

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