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Originally posted by TerryK:
I think the crux of the matter for many of us is immune system functioning. We need our immune system in Th1 mode.

Some infections can make your immune system tip over to a Th2 response and we need a Th1 response to help get rid of lyme.

I'm hoping that you find the answer for yourself and your girlfriend. I'm still looking for answers myself. The more reading I do, the more I think the th1 functioning of the immune system is critical. I don't think IV abx is going to solve the problem if your immune system is not functioning properly.

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Posts: 856 | From MA | Registered: Jul 2009  |  IP: Logged | 

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Bryan's argument not to use rife and abx together does not make sense to me. He contends that abx will drive borrelia into cyst form. From everything I've read, anything that threatens borrelia drives it into cyst form. If rife kills borrelia, that is a threat. Just my opinion and again, I base my rife treatment on muscle testing and I find via muscle testing that it is perfectly fine for ME to use the 2 treatments together.

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Posts: 856 | From MA | Registered: Jul 2009  |  IP: Logged | 

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Originally posted by coltman:

Well the thing if the rife works how they think it works (and it if works at all) it destroys spirochette immediately during rifing session (by breaking its cell wall). So it doesn't have a chance to convert to cyst form

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wouldn't one treatment cure you?

Perhaps I should go try to read up on rife.

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Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner.

Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006  |  IP: Logged | 

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Originally posted by METALLlC BLUE:
]I think so. I'm sure you'll get the hang of it. In a way it's probably undermining your own techniques that you've been used to. You have to focus on others and that adds a huge new dimension to your own workout. I think you're right about the challenge. Unfortunately I never overcome it since all those areas are ones where my Lyme (and others) interferes with my ability to master the task. Guitar for example. I can't get past this place I've been stuck for about 5 years now. I finally -- after a year of trying -- learned how to play and sing at the same time, but I can only play rythmn, and if it's even slightly out of sync vocally, I can't perform it.

It's **** like that, and I think It's my "smaller" version of pushing, like so many patients do physically.

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Posts: 13449 | From Ohio | Registered: Feb 2007  |  IP: Logged | 

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TerryK
Personally, I use the CAFL and muscle test for the right frequencies. Dan Bergy can probably help you determine which ones might work for you.

You can download CAFL here in .pdf format
http://tinyurl.com/yd6y92x

For the burning feet I personally need rickettsia frequencies but someone else will need frequencies for whatever is causing their problem.

Some of the frequencies that I've needed throughout have to do with viruses. Also lymph movement and lysine stimulation. Once in awhile I need lyme but I'm already on pretty heavy treatment for that so it seems to be covered pretty well which may be why I don't muscle test that I need lyme frequencies very often.

Start VERY slow as some people have a big herx. Some say 1 minute is long enough until you know how you respond. With muscle testing I do very long sessions - yesterday I did 2 1/2 hours. I think that is unusual and not the experience of most people.

Bryan's argument not to use rife and abx together does not make sense to me. He contends that abx will drive borrelia into cyst form. From everything I've read, anything that threatens borrelia drives it into cyst form. If rife kills borrelia, that is a threat. Just my opinion and again, I base my rife treatment on muscle testing and I find via muscle testing that it is perfectly fine for ME to use the 2 treatments together.

edited to add:
I have Bryans book but I don't use it to pick frequencies so I can't tell you if they work or not. Again, it will depend on what your specific issues as to which frequencies would work best for you.

Terry

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keltyl

Haven't had time today to keep up with this thread, but I did ask J about muscle testing and was poo pood. I also mentioned rifing quite awhile back and was told they "weren't fans of rifing". Of course that doesn't me if the point comes I want to try it, I will.

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TerryK

I've talked to some doctors who use muscle testing and feel it is valuable and others who don't. To each his own. It works for me. I don't bother trying to convince a doctor one way or the other. I never bring it up at all with some because it is clear that they would not be open to it. I think many of them have no experience with it and simply don't believe in it.

Same with rife. Some have patients who have success stories and thus they think it might be useful. Others don't. shrug

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glm1111

MB...FYI...Just thought i would add this info as a possibility as to why you may have fatigue when you use a certain group of muscles. This used to happen to me. Round worms can invade and travel through muscle tissue.

Google " worms in muscle tissue"

They also migrate to the lungs. I had severe asthma (rush to the hospital via ambulance asthma) for 40 yrs until I started using antiparasitics. My asthma and breathing problems are completely gone.

These parasites can do a lot of damage especially when the immune system is not functioning properly and leaves us open to a parasitic hyperinfection.

I feel them wiggle and die daily in my muscle tissues so I know they are/were there. Hope you find an answer soon,

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coltman

Some infections can make your immune system tip over to a Th2 response and we need a Th1 response to help get rid of lyme.

I'm hoping that you find the answer for yourself and your girlfriend. I'm still looking for answers myself. The more reading I do, the more I think the th1 functioning of the immune system is critical. I don't think IV abx is going to solve the problem if your immune system is not functioning properly.

Thanks for Great links Terry!

And I am myself reached conclusion that Th1 response is critical for combating chronic infection. But what is not clear is the exact nature of immune dysregulation.

Here are few other links about a Th1 subset responce and BB
http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pubmed&pubmedid=15958074 significance of TNF-α in the early eradication of borrelia

http://www.jimmunol.org/cgi/content/full/177/10/7076 IL-10 deficiency promotes BB elminiation

http://www.news-medical.net/news/2008/12/03/43759.aspx NK (t) critical for killing lyme

On the other hand it seems MS and neuro symptoms are most likely caused by Th1 responce (which is inflammatory in nature and is characterized by production of macrophages and lysis of infected cells)

So its not per se lack of th1 response. It is that its for some reason ineffective in eliminating chronic infections . One of the mechanisms is subversion of macrophages themselves- it is been documented that intracellular bacteria inhibits cell apoptosis and therefore able to stay in the cells much longer and reproduce there, s it also can subvert detection mechanisms preventing recognition of infected cells.

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coltman

Well the thing if the rife works how they think it works (and it if works at all) it destroys spirochette immediately during rifing session (by breaking its cell wall). So it doesn't have a chance to convert to cyst form

Spirochette converts into cysts when it starts sensing hostile environment - like elevated level of harmfull (to it) abx in the blood. ABX do not destroy bacteria immediately - they take time to work, so it has time to convert

All in all if rife works I think his argument makes perfect sense.

So main reason to not use abx during rife is to allow bb come out and be in spirochette form which is only form vulnerable to rife. I dunno though if intracell abx cause conversion to cyst - that a topic to be researched if some abx do not cause it it makes perfect sense to use them

I do know though which abx definitely cause the conversions to l-forms and cysts- cell wall inhibitors like cephalosporins or penicillins.

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AliG

I haven't read this thread in it's entirety. I've scanned your Sx & Txs (as best I could).

I second James' opinion in that I see persisting Babesiosis and Lyme.

I had the hardest time tackling Babesiosis but I do think I finally did.

IV Clindamycin
IV Azithromycin
Mepron
Diflucan
(all 3 weeks on, one week off - repeated 3 times)
Artemesiae (1 week on, three weeks off, repeat 3 times)

During 3rd week (before break)-
3-5 days of Flagyl(metronidazole)-depending on tolerance
& Questran (cholestyramine) to absorb toxins

That seemed to have eliminated the Babs symptoms.

Just before doing that I did Biaxin (4 mos) along with Ceftriaxone(3 mos added in after 1 mo) & Zhang's herbs, during the last week, I dropped Biaxin & added in Flagyl & Questran.

I think that made SIGNIFICANT progress against the Lyme during that Tx.

Had I taken out the Babs before that, it might have done the trick, but I believe that the Babs still protected the Lyme to some degree.

Since that last IV Lyme tx & then taking out the Babs, I've been on Mino, Rifampin, & Diflucan and had a MUCH slower creeping back of symptoms than with previous Lyme Txs.

A recent dental appointment sent me into a flare & I've now added a fairly high dose of Amoxicillin to the mix. That seemed to settle the flare.

I don't know if it will pull me back out of the creeping sx. I guess time will tell.

I'm not sure what direction we'll go in at my next appt, but I don't think it's going to be weaning me off abx like I had been hoping. [Roll Eyes] Not just yet anyway.

If I were you, I'd try to lay off the aerobic exercise & aggressively tx Babesiosis for a few months. I think it's the Babs causing you to have problems with non-aerobic exercise.

The non-aerobic exercise should be starting with stretching & resistance no more than 1 hour every other day, and working up to light weight & gradually increasing but still no more often than every other day until you get the Lyme taken care of.

I almost forgot..... I also did a month of Bactrim in between the IV Lyme & IV Babs Txs & it may have been helpful for me because the Sx didn't come back during that time.

I don't recall reading why you couldn't take it but I have no way of really knowing whether it made a difference or if I would have still felt good without it. [Roll Eyes]

If you think parasites/worms may be an issue....

Zhang's Allicin (best taken with chlorophyll capsules if you plan to keep your girlfriend [lol] unless she takes them too [Big Grin] ),
+
raw pumpkin seeds (taken first thing in am & every 6 hours after for a few days),
+
papaya (I get the large Miradol Papaya & eat 1/2 per day)
+/-
& bitter melon(if you can stand it (ICK) I think Zhang's has capsules but I haven't tried them) should address them.

I'll try to go back & re-read, but I wanted to post this in case I didn't get a chance & forgot about it later.

Ali

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TerryK

Coltman - thanks for the links and the info. I didn't know about MS and neuro symptoms and a Th1 immune response. I think when either Th1 or Th2 becomes dominate it can be hard to get rid of certain infections. I'm far from an expert although it is an area that I plan to look at more as time and energy allow.

I've recently found a plant (PawPaw) that seemed to help me quite a bit. The leaves work on malaria but I've been using a product made from the twigs. Most interesting thing that I read about it is that it downregulates ATP (energy production) of abnormal cells. It's used for cancer.

We know that babesia, bart and babs can all live inside the cell. It's possible that Paw Paw reduces the energy available to these organisms which would drive them out of the cell where maybe they can be killed or perhaps they die in the cell?

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TerryKBased on the thought that it down-regulates cellular ATP production I initially thought I might actually be more fatigued but just the opposite happened. I assume I have a lot of abnormal cells that are sucking up my energy?

I'm still looking into it and can't recommend it for anyone else because I don't know enough about it yet.

Here is an interesting site.
http://www.pawpawresearch.com/

Here is the description of the product that I take.

• Paw Paw Cell-Reg� selectively targets specific cells to enhance the overall health of the body.
  
  Paw Paw twigs contains acetogenins-active compounds that modulate the production of ATP in mitochondria of specific cells, which affects the viability of specific cells and the growth of blood vessels that nourish them.
  
  A recent clinical study with over 100 participants showed that the paw paw extract, containing a mixture of acetogenins, supports the body's normal cells during times of cellular stress. Paw Paw Cell-Reg is a valuable tool in strengthening and supporting the immune system.
  
  Only those who desire to target specific cells should take this product on a regular/daily basis.

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TerryK

I doubt that it inhibits formation of cysts but who knows?? Even if it did, it would seem unlikely that a person wouldn't have all the forms of borrelia in their body if they've been infected for very long but again, who knows? Each cyst supposedly can break open and release up to 5 borrelia. You can see how one would have to kill all cysts in order to get rid of the infection entirely.

In any case, it works for me. It's not perfect, it's not the only thing I need. It is another tool that I find very helpful.

I avoid spending time and energy trying to convince anyone. There are many discussions of this nature going on in other places. I just wanted to convey my personal experience with it in case it was helpful.

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sixgoofykids

Actually, with Pilates you don't work out with the class because you need to be free to help, so it doesn't affect my workout. What's challenging is learning to tell others what to do when I'm not doing it myself and learning to put it into words.

I play flute at Mass every Sunday. When I was sick, I could only play the melody. The harmony if it was a pretty good day. Now I can play the flute part which is typically different than what everyone else is playing/singing. I think a big part of the block with music is the Lyme, at least it was for me.

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springshowers

Here is a simple and short page that talks about how it was developed and how it works.

This site also compares and talks about other energy devices from a practitioners and patients perspective.

http://www.energetic-medicine.net/Rife.html

AliG
Terry thanks for that info, the pawpaw sounds really intriguing. I'm going to go check that out! [Smile]

Spring thanks for that link. I'll check that out too. It sounds like I might find some answers there.

Sorry to sideline your thread MB, with my questions [Roll Eyes] Shame on me [tsk]

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TerryK

Thanks for the link Spring. I think there are a number of theories about how rife works. Rather than divert this post, I'll link to AliG's post where she asks about rife. Good thinking to start a new post AliG.
http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/86466?

Hopefully the pawpaw will turn out to be something useful for us. So far I'm pretty happy with it but I've only been taking it for about a month and at low doses.

Terry

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oyvey

Some of your emotional and mental symptoms seem very close to those of my family and two friends who all have had severe Bart. The six of us tried Cipro, Factive and Rifampin and doxy but nothing worked except levaquin.

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oyveyOne thing about Bart is that it seems to respond quickly to the right antibiotic for the individual but if it isn't taken long enough--if you haven't really decimated the bacteria-- Bart comes back very quickly, and it is soon just as strong as ever.

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oyveyI have known a couple of other people like us who couldn't get anywhere with any treatment for Bart beside levaquin, and their improvement in mental and emotional stability was also rapid. So if you were improving with the levaquin and didn't take it long enough you would probably relapse quickly and then feel as if you hadn't gotten anywhere.

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oyveyI also read about a case just posted in the blog by lymeMD about a patient who wasn't improving on the lyme treatments given. It took many tries until he finally found the right antibiotic cocktail for her but now she is improving.

So God Bless and keep on keepin' on. My husband has had terrible gastro problems with lyme for over a decade--much pain and debilitation-- and he kept asking about rifaximin Finally he got some prescribed for him and he was tremendously improved within weeks. Amazing.

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Posts: 4157 | From Western Massachusetts | Registered: Dec 2004  |  IP: Logged | 

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TerryK
I'm getting ready for a doctor's appointment over the next few days but I will after that.

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TerryKI would play it by ear. I don't know which frequencies you are starting with but I'd start with no more than one minute per frequency at first and I would only do one pathogen. Your next session will depend on how you respond to the first one. If a big herx, give your body time to clear out toxins and recover. Go by how you feel. I've gone for as long as 3 weeks and as short as 3 days between sessions. Give yourself at least 2 days between sessions, ideally more time than that once you have figured out how you respond to it.

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TerryKMakes sense but we don't really know how rife affects the body. It could change PH, oxygen levels and many other things for a period of time after treatments making it a more hostile environment for borrelia or other pathogens.

I agree that borrelia has survived for a very long time by adapting. It is great at that from what I've read. I don't know how fast it could adapt or become resistant to rife. I tend to think it would not happen very fast but that's a wild guess, I have no data at all to back it up.

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TerryK
I found it helpful when trying to figure out what type of machines were out there but it is not a book I use as a reference.

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It is complicated. I'll e-mail you. Will try to get it done in the next few days but it might be Wed. or Thurs.

Glad you have some new things to try.

Terry

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kim812
MB- I had to reply to your post. I haven't been around for a while since I have discontinued treatment.I thought I had been on alot of abx/meds but you have done way more than me. I was seeing the main LLMD and N.P also and wasn't making progress. They finally told me about some chinese doctor in VT they thought I should see. They said he was good with complicated cases but that his herbs tasted and smelled terrible. Then they wanted to send me to a endocrinologist in CT. Now I never had any thing close to a positive test so in that way you are different than me.

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kim812I honestly think they didn't know what to do for me anymore and that is when I began to really doubt the Lyme diagnosis.
I was on IM for 4 months 3X weekly and IV for 9 months. Nothing....Plus countless other abx along with treatments for co-infections. I hope you find your way back to health. I am on year 5 and won't give up trying to find the answer.

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Posts: 4157 | From Western Massachusetts | Registered: Dec 2004  |  IP: Logged |