I have been very, very, ill from Lyme for years and years now. Done lots of IV antibiotics but they didn't really help. Like most of us, I haven't really had the money to try all the million different treatments out there.
But just now I have been incredibly lucky to come into a big chunk of dough through inheritance... it's a really huge blessing because I haven't been able to work and this disease was totally bankrupting me, so I don't want to waste my resources now.
So my question is: if you had the funds to choose any of the clinics out there that treat Lyme, for instance, The Envita Center in Florida, the Klinik St. Georg in Munich that does the hyperthermia treatments,
the Paracelsus clinic in Switzerland that claims to treat Lyme... or other clinics I'm not even aware of... which would you choose???
I realize probably not a lot of people on this board have experience with these clinics but I"m hoping someone out there has heard something. I have to start my search somewhere for some inside info on which way to go.
And I have to do something because this disease is really killing me.
Please chime in if you've heard anything at all about any Lyme clinic. Thanks!
............................................
(breaking up the post for easier reading for many here)
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Over the years, I've read about all three you list.
Of the three you mention, I would not choose one.
Because none of them is truly lyme literate or tick-borne infection literate in the deepest sense of understanding.
The hyperthermia holds many risks. Years ago, when I thought I would be able to scrape by enough money, I seriously considered going to Italy for similar treatment but - after much study - decided it was just far too risky and not very effective for most.
[ 11-22-2015, 05:11 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- A different consideration in Germany:
This has helped some (though not all) reach good solid, long-standing remissions (although it's not just with the initial trip . . . treatment still is a process):
BioPhoton Treatment with Dr. W -- Full Sample Chapter from book: Insights in Lyme Disease Treatment, by Connie Strasheim
Chapter 6 Bionic / Photon Therapy for Lyme Disease
[ 11-22-2015, 05:12 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- What seems most practical for the anti-infection approach, getting a rife machine
- and locating an excellent LL ND to guide you with nutrient support therapy. I would also get weekly massage if at all possible. It's so very important for so many reasons.
You can have the rife for life for all kinds of other times in the future when it may be required for yourself of loved ones (a real plus in my book):
RIFE Machine - Reference LINKS -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- As for the money you have inherited, although a large amount may not even do this, I would set aside living expenses for the next several years (actually, even see if it might extend as far into the future as possible)
BEFORE doing anything else. Secure a roof over your head and all things required to hold that up.
Whatever treatment path you choose could still take several years and any kind or remission reached will take time and go in steps. And no treatment path has the kind of guarantee that I would risk a roof over my head for it.
You would not likely be able to return to work all steady and strong - and keep that going - for a bit of time after regaining ground.
Above all, focus on what you will need to keep a roof over your head -- and if your rent realize that some landlords in some cities are now raising rents by as much as 30%.
Where I live, much of the rents have just skyrocketed, even 3 & $400 increases from around $800. a month for a 1 Bedroom to over $1,200 -- and that's nearly the lowest . . . and the word is to expect sharp jumps in rental market for some time. And, it's happening across the board in some cities / entire metro areas.
For some places, these large jumps come even overnight, they call it "an exciting fluid rental market" - the owners are loving this.
Now this may not seem a lot in California or NYC but it really IS - and it is for other locations, too. Just saying that it's higher elsewhere is no defense. But don't let reality clobber you if you can help it.
In my city just two days ago, the city board has made an announcement that EVERY neighborhood should plan on a park in their midst to allow camping for homeless. Permanent year round camping.
That's how severe it's become in just a few months. With no signs of letting up. There are no reasonably priced places to rent anymore within a several hundred mile radius in my city -- and it may well be else where now or soon.
If you own or plan to buy, also consider the way that taxes may increase and have enough for repairs & insurance (is it really going to be there if you need it?), etc.
Consider the plumbing from your home to the street, the roof, the foundation, the wiring, heat / air / appliances . . . EVERYTHING that is part of your home.
Will it survive for you, for a long, long time?
Above all, plan to keep a roof over your head. THAT is the first priority. This matters most.
Also consider likely hikes in power & water bills, and insurance policies. If your city / town is planning a new sewer system or some kind of major project, utility fees could jump. You might talk to your town's planning commission.
INVEST - Secure / invest the largest bit of that money. Make sure it can draw interest for you.
This is where a rife machine is looking like the wisest approach. Spend a little, take good care of yourself but be certain - absolutely certain - that you will have a place to live now, and for decades to come (or for as long as the gift from your departed loved ones will stretch).
If you drive, likewise, it makes sense to do a safety check of tires, and plan for upkeep, etc.
I'd splurge on some excellent walking shoes so that you can walk all over your beloved spaces & explore new ones - truly a gift to be able to do that and shoes are your body's foundation.
I'd also put a little bit of the gift toward the arts - some kinds of experience that you truly enjoy that nurture your spirit. That may be a membership to an art gallery or a music concert series -- or even find out where your favorite kind of music might have HOUSE CONCERTS in your area and make it a commitment to attend regularly.
Whatever you choose, this is a gift from your loved ones to help you enjoy experiences. A little bit set aside for this purpose -- or maybe music or art lessons -- or learning some kind of new skill or craft - would likely bring sunshine to their heart. So carry that in yours.
May a sense of peace come with your decisions.
[ 11-22-2015, 02:46 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Yolanda Foster did hyperthermia and is still sick.
I'd also consider if some of the symptoms you have lingering might have been caused by some of the drugs.
It's over a year since I've been off antibiotics and I'm still undoing the damage from levaquin.
If you've ever taken cipro, levaquin, IV avelox or the other fluoroquinolones, they ALL can cause lingering symptoms that seem like Lyme and Lyme treatment probably won't help them.
Good luck, I hope you find relief.
Posts: 2839 | From California | Registered: Jul 2012
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posted
Infusio in Germany seems to have the best, wash your blood, Cytokine bath, etc. Check into this.
Posts: 532 | From Texas | Registered: Oct 2004
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Hands down, I would read this thread, stay home, and treat with a home hyperbaric chamber...it is what ultimately gave me my life back, and is helping many others:
Cost is a deterrent for some, even though there are creative options.
I only wish I had found this therapy earlier on in my illness...I would've saved myself a fortune and years of suffering...but things happen when they're supposed to happen...
If you're interested, let me know...I'll help you get started.
Posts: 1880 | From Earth | Registered: Jul 2013
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posted
See, this is what is so tough about having this disease... I was able to start this thread over 7 days ago now, I was able to read all the replies with great interest... but I have not been able to post a reply myself! I just felt too foggy and ADD and messed up to be able to write coherently.
This disease sucks.
Keebler thanks so much for your incredibly thoughtful replies. You are 100% correct about keeping enough money to be able to live into an uncertain future when you have this disease. I know this is not possible for most, and I feel very badly about how this awful disease bankrupts so many good people.
Thanks for the advice Keebler, I'm lucky in that my living situation is very stable and secure, and I thank my lucky stars for that everyday.
The money I have set aside is for a kind of hail-mary pass to get some kind of treatment that can pull me out of my present state of near total collapse.
However, I am not at all new to Lyme or to this board. I was around here starting in 2005, and I have seen ALL SORTS of fad treatments come and go.
I have tried many, many things, and I currently own the GB-4000 rife machine, an EMEM5, and a home-made PEMF machine (the pemf machine is awesome btw, it really helps me). I think rife does do something, but I was never consistent enough with it.
So, Lymetoo, I know you have been on this board even longer than I have. I know you've seen all the treatments come and go, the endless supplements, the deadly chemical heat treatments in Italy, rife, stem cells, etc. etc...
Are you saying that of all these things, the biophoton treatments in Germany are what impressed you the most????
(You know, I have a pretty extensive background in chemistry and physiology and biochemistry, and I am humble enough to know that we are mostly still in the beginning of our understanding of how the body works...
but I have to say, the biophoton theory sounds totally, totally OUT THERE to me, anyway... I mean it's pretty fringe.)
Yes Judie, it would be almost impossible to tell what symptoms of mine are damage from drugs, and what are lyme. I don't know.
I was intrigued by going to the Paracelsus clinic in Switzerland because my worst symptom now is my poor gut. It is almost completely paralyzed and incredibly painful. I can only eat a very few foods without a bad gut reaction. I have no idea if this primary Lyme affecting my g.i. tract, or gut damage from tons of antibiotics.
But Paracelsus claims to treat the gut, so I was looking at that closely. But I'm not coming across many Lyme success stories from there.
Thanks dal, I will check out Infusio. Sounds like another version of the Klinik St. Georg, but without the whole-body hyperthermia.
Yes Phoiph, thanks for your reply. I did do a few dives back in 2005 at a facility. It was deep though. And I am a certified diver. Heck I'm even a certified Nitrox diver....
I couldn't possibly fit a home chamber into my one-bedroom, and I would have such problems doing it consistently... I sometimes wonder if it wouldn't be better to spend a year in Florida trying to do a Nitrox dive every day. At least I'd get into shape that way...
Oh man, all I know is that I'm suffering right now. I have ordered the bigger amplifier for my rife machine, maybe the added power will help me.
Thanks to all who replied to me, this board is so awesome. It's interesting that no one had resoundingly good things to say about any Lyme clinic, except maybe the biophoton stuff. Very interesting... Yikes, still not sure what to do.
...............................................
(breaking up your post for easier reading for many here)
poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
You don't know what to do because no one has the answer for all of us. We just don't know enough about how the disease works and the medical establishment has done its best to make sure it stays that way.
I've been sick longer than you have and the only thing that holds it at bay is antibiotics, especially IV. But doesn't cure. Who wants to do that forever? No one. We need a better choice.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
Yeah, I realize different people respond to different treatments differently...
I for one did an entire year of I.V. Rocephin last year, 12 full months. I was mildly, somewhat better on them, kinda, but went right back to my worst state as soon as I stopped.
So now I have no choice, to try something more alternative. But what, that's the question...
I'm not herxing from rife treatments right now, so I guess I'll get a more powerful device, like a MOPA etc. or possibly both MOPA and doug coil...
This is so tough. I can't believe no one has anything good to say about any of the clinics. That's disheartening.
Posts: 194 | Registered: Jul 2005
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
"It is almost completely paralyzed and incredibly painful. I can only eat a very few foods without a bad gut reaction. I have no idea if this primary Lyme affecting my g.i. tract, or gut damage from tons of antibiotics. "
Many years ago, that's what happened to me the first time I took levaquin. This was long before I got infected with Lyme.
I lost 1/3 of my body weight.
It took me 2 1/2 years to find a practitioner who could give me the correct diagnosis.
It may be easier to make some decisions if you know what's causing the symptoms.
I had a CDSA test and that sorted out my gut. I had all kinds of stuff going on that a bunch of doctors had missed. Infections, gut flora was off, so many problems...
posted
I would treat with anti-parasitics, rx and herbs. Rotate them. Also do raw garlic, juicing and probiotics all gut for the gut.
Raw local honey and pollen.
PEMF is also good. Infrared sauna good. Eat whole foods such as fruits and vegetables. Coconut water in the AM.
This would reduce your load. Then maybe go with Germany. Biophotons seem to have good reviews.
Wishing you the Best!
Posts: 697 | From CA | Registered: Dec 2011
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bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
Happy holidays...after considering embarking on iv abx and hearing your story i dunno... have you considered bvt ? Budget to work with? Ivig ,fmt and dr k ...
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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posted
Someone I know fixed himself with Chinese herbs and daily PEMF therapy - pulsed electromagnetic frequency treatment, to boost the body's e'm energy, to be able to function better.
Others have gotten better with stem cell injections.
I've heard a lot of support for the biophoton treatment in Germany.
I'm going to PM you -
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
I would see Dr. W in Germany (that's where I went).
There still a lot of follow up work to do to see why you got so sick, but it's easier after the borrelia is gone. I'd go to the Hansa Center in KS after Germany.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
I went to see Dr. W in Germany for a total of three trips and three months. Got worse each time. None of the lyme patients I talked to got any better afterwards.
Posts: 99 | From NJ | Registered: Mar 2010
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
Wow Rainbowriver. That's very sad. Just goes to show there's no magic bullet. Thanks for reporting back your experience.
Posts: 2839 | From California | Registered: Jul 2012
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posted
Maybe stem cell injections? I heard many say it's turned their health around. I suggest chatting with people who've done them if you want to investigate this possibility. PM me if you wish.
Oh, I just saw this is an older thread. Wonder what BorreliaBrain's been up to. I'll send a pm...
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
maybe its a destroyed gut flora now instead of the lyme.
The two are very similar in symptoms.
Maybe try no antibiotics for a while and just a strict anti yeast diet,see if you herx on just the diet.
Try just and anti fungal and see if you herd on that.
If you herx on an anti fungal then you will know gut flora is a problem,maybe the whole problem.
Posts: 227 | From fairhaven ma | Registered: May 2015
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quote:Originally posted by rainbowriver: I went to see Dr. W in Germany for a total of three trips and three months. Got worse each time. None of the lyme patients I talked to got any better afterwards.
I got better with photon treatment.
Borrelia wasn't the only issue with me (or with anyone with Lyme) so I had to treat the other conditions including coinfections, parasites, heavy metals, nutritional imbalances, etc. If I hadn't treated the other things as well as using the photons for the borrelia, I wouldn't be well.
IMO, photons only treat borrelia. There is ALWAYS much more to Lyme Disease than borrelia alone.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
I got better, but not totally well with photon treatment with Dr. W in Germany.
Then I worked with an energy healer locally and treated parasites and heavy metals.
I am over 90% well.
However, different people do better with different types of treatments.
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8880 | From Illinois | Registered: Aug 2004
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klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
FWIW..... Both the Biophoton Therapy and PEMF, plus Ozone therapy and several others are offered at the large alternative clinic here in Clearwater, FL. Look up Lifeworks Wellness Center.
My Negatives: I spent a year going there in a last ditch effort to get cured back in 2004, but did not improve, and one tx they put me on sent me to the Emer. Rm. (Monastery of Herbs Lyme tx #73).
However, the options of Biophotons, PEMF, Ozone, etc, were not available then. Also, in case it matters to anyone, most, if not all, the staff at this clinic are Scientologists, though they do not mention it or push it,
and have more experience in alt. med as a result, since that is all they've ever done, not believing in conventional meds.
The head doctor does give ABX for early Lyme infections though, and other appropriate situations, but they do not use it for treatment of chronic Lyme.
My Positives: I did have NAET therapy there for MCS, which caused amazing results that lasted for a year after only one session.
I had been sleeping on a porch for 2 months due to outgassing from a new mattress and my tolerance was not getting any better.
I had one session of NAET, waited 25 hrs. and was able to sleep in the bed just fine.
My husband had persistent tennis elbow for years from running an old table saw he should have replaced.
It was diagnosed there by muscle testing as a yeast infection in his elbow and he was given a homeopathic remedy. I thought that was pure quackery, but it was cheap, so we tried it.
It cured him in two days and it has not come back for 12 yrs. now, after he had wasted lots of money on expensive conventional treatments like cold lasers. I later used the same remedy (Pleo Alb) to cure thrush.
klutzo
........................................
(breaking up the post for easier reading for many here)
[ 08-10-2016, 03:12 AM: Message edited by: Robin123 ]
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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posted
I took my son to Dr W. in Germany as well as the clinic in Kansas and neither helped him.
Posts: 8981 | From Illinois | Registered: May 2006
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quote:Originally posted by klutzo: FWIW..... Both the Biophoton Therapy and PEMF, plus Ozone therapy and several others are offered at the large alternative clinic here in Clearwater, FL. Look up Lifeworks Wellness Center.
My husband's job is down there so I live down there part time (can't leave the kids and grandkids, so spend part time in Ohio, too!). I'll keep this place in mind if I need medical care! Thanks!
I looked up their biophoton treatment. Though it looks good and interesting, it is nothing like the photon treatment I had.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
Sixgoofykids, Thanks very much for the info that your photon tx was not the same as the Biophoton tx at Lifeworks. I would never have known, since it sounds like the same thing.
That is helpful, at least to me, since I was considering one last try at either that or the ozone, which they are currently pushing as their preferred tx, along with tx of viruses, parasites, etc.
They also include hormonal problems, nutritional deficiencies, and toxins in basic tx of Lyme.
They emphasize that people w/Lyme always have many organisms, not just BB.
That may be why 3 weeks of metronidazole made me 95% better for about 5 weeks, before sx came back. I doubt it will kill off Bb by itself, so it must be some other infection.
klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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posted
Klutzo, ours wasn't a blood treatment. It sounds like the photon treatment Lifeworks does is a UV treatment to the blood. Ours was a treatment shining near infrared light on our body.
Whatever you decide to do with them, go with your instincts. I was drawn to the photon treatment and it was great for me. I find I'm drawn to the things I need. So if you feel good about a treatment, go for it!
posted
Nobody is mentioning LDI (because this site just doesn't seem to 'like it'...the LDI people all seem to have gone to the FB group) but, there are many people with Chronic LYme treating it successfully with LDI. You can Google it and learn more and see which clinics are doing it. Good luck:)
posted
Low Dose Immune Therapy. Its pioneered by Dr V in Anchorage and modeled after LDA therapy but applied with bacterials (specifically a 'Lyme Mix').
ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
I'm well after a30 year old infection thanks to an ILADS doctor. My 23 year old son is ending maintenance after over a year symptom free. My youngest is better but not in remission. We treated everything! Intense at times. Lots of supplements and vitamins. Uncovered many issues over 5 years. Combos,of abx etc...
Hope you find the answers soon!
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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