Girl cured of lyme disease. Thoughts?

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MAF249
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Date Joined Jan 2017
Total Posts : 119
   Posted 4/18/2017 12:30 AM (GMT -6)   
http://www.wcvb.com/article/belmont-family-says-experimental-treatment-cured-daughters-lyme-disease/9268783

Has anybody had this done? I'd like to be able to do this if its possible somehow. I'm at the end of my rope.

jennydancingfish
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Date Joined Sep 2016
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   Posted 4/18/2017 1:07 AM (GMT -6)   
I know two people who went there who are still but it did help them make improvements
Currently with LLMD planning on doing modified Cowden Protocol and Buhner
Switched to this route after very bad herxing on rifampin
Diagnosed with Bartonella and Lyme. Twin has Bartonella and Mycoplasma and Lyme.
Twin improving on rifampin, zithromax, and tinidazole. Anger, rage, explosivity, emotional volatility, head and bone squeezing, sense of overheatedness all improved.

MAF249
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Total Posts : 119
   Posted 4/18/2017 1:20 AM (GMT -6)   
So I am guessing they had the same fever treatment? I may start some fever/sauna treatment at home.

bluelyme
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Date Joined Nov 2015
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   Posted 4/18/2017 3:24 AM (GMT -6)   
I have done several ozone sauna at 109 and while great for detoxing not curative ..we have some hotsprings here at 115 im gunna try

yancync
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Date Joined Nov 2015
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   Posted 4/18/2017 5:34 AM (GMT -6)   
My first thought was it's too soon to say "cured". I'd love to see a follow up report over the next few years. My second thought is I need to remember to look into it if DS isn't getting to a stable place in a year or so with the current treatment. Also, I wanted to know the co-infections. DS has lots of breathing issues and overheating causes him great duress. Plus the cost is staggering.
Parent of 15yo DS w/ CDC+ Lyme test 11/15, late stage Lyme + mycoplasma, bartonella, babesia. Treating with antibiotics/anti-malerials + Vit D, C, Vit B-12 injections, multivit, milk thistle, dandelion, parsley, cilantro, Burbur/Pinella, L acetyl carnitine, charcoal, mag etc.

Website I started: ParentsofLymeKids.com aka Lyme Disease 101 for Parents

PeteZa
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Date Joined Jul 2015
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   Posted 4/18/2017 9:05 AM (GMT -6)   
Wow, this was recent and she is still recovering. I would like to follow her progress.
____________

Life has two rules: #1 Never quit #2 Always remember rule # 1.

Traveler
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Date Joined May 2007
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   Posted 4/18/2017 9:38 AM (GMT -6)   
Let's not forget the article also said "Sara prepared with sessions in an infrared sauna and IV antibiotics. "

So it wasn't used as a stand alone treatment either. It doesn't say how long she had IV abx. While some people have had success with this type of treatment, it's also dangerous, as the body temp is raised to dangerous levels, then carefully cooled back down, with doctors watching you ever step of the way in case they have to intervene. For those considering this, please be sure to have doctors available during the process.
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New Lyme case 8/2014 - Healed 1/31/15 - unknowingly had Asymptomatic Babs and Asymptomatic Bart, being treated now though (2/2016)

Pirouette
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Date Joined Mar 2014
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   Posted 4/18/2017 10:32 AM (GMT -6)   
I think progress is good… but I totally echo Traveler's comments - this wasn't the only treatment modality implemented, which is KEY.

And also agree that the temp-raising method can be pretty dangerous. Explore this carefully. It's certainly not an option for me - I faint when subjected to the heat of hot tubs, hot showers, hot saunas… although that is probably better now that my yeast/fungal overgrowth is mostly under control, but I really don't want to find out how scary it could get. Be careful with heat!

"Cure" is also a term people toss around but generally, you're not cured from Lyme because it's impossible to eradicate all the microbes for all the same reasons it's hard to diagnose and treat. You can hopefully eliminate symptoms and heal from damage, which I think is better termed "healed". Beware of anyone saying they are cured or can cure you.

-p
Lyme Moderator
Chronic late-stage lyme—likely infected in 2000; Clinically dx Mar'14 w/ Babs, + for Bart, CDC + for Bb. Multiple viruses & GI/immune treated first; started AL-Complex in May, A-Bart & A-Bab in July; Nov'14 IV port installed-started Rocephin; added vancomycin Mar'16
DETOX: Pinella/Burbur/Parsley/Milk thistle/Burdock root; cholestyramine / jap. knotweed L-5-MTHFR LMN-V-II probiotic

Traveler
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Date Joined May 2007
Total Posts : 36310
   Posted 4/18/2017 12:07 PM (GMT -6)   
I"m like you, P. I don't do well with heat - too many times of having heat exhaustion, maybe? Especially while infected and untreated, anyway!

So it's not an option I'll even explore, but for those that wish to, just be sure that you are carefully monitored - as the temp to kill the spirochetes is high enough that seizures can easily happen because the bran and the body are so hot.
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New Lyme case 8/2014 - Healed 1/31/15 - unknowingly had Asymptomatic Babs and Asymptomatic Bart, being treated now though (2/2016)

Pirouette
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Date Joined Mar 2014
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   Posted 4/18/2017 12:11 PM (GMT -6)   
T -
you're fair-skinned, like me. I think it's in our genes… my ancestors were English/Irish/Scottish. They don't have heat there. LOL

Although, I tolerated heat well as a kid. So… I am trying to get to a point where I'm OK with heat again as I think a good sauna is probably healthy. Maybe someday...

-p
Lyme Moderator
Chronic late-stage lyme—likely infected in 2000; Clinically dx Mar'14 w/ Babs, + for Bart, CDC + for Bb. Multiple viruses & GI/immune treated first; started AL-Complex in May, A-Bart & A-Bab in July; Nov'14 IV port installed-started Rocephin; added vancomycin Mar'16
DETOX: Pinella/Burbur/Parsley/Milk thistle/Burdock root; cholestyramine / jap. knotweed L-5-MTHFR LMN-V-II probiotic

Traveler
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Date Joined May 2007
Total Posts : 36310
   Posted 4/18/2017 12:29 PM (GMT -6)   
So true P!! I'm fair skinned with freckles to boot!! And those dratted blue eyes too - they don't do well with a lot of light, but protecting them with lutien for the last several years now.

I tolerated heat well up until about 2 years before I trialed abx treatment. That first year, I had heat exhaustion twice, then it was every year after that until I got into treatment and realized that I had to stay out of the heat and why. My body got to be a real bugger, as my endocrine system was really whacked out, and I couldn't tolerate the ambient temps around me if they weren't between about 78 - 82 degrees. Soooo glad that I'm not in that stage any longer!!!

You would have to add in a lot more nationalities than that for me!! LOL! I like to say I'm a Nordic Heinz 57. I have Irish, Scottish, Welsh, Norwegian, German, and a few others that I can't think of right now.
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New Lyme case 8/2014 - Healed 1/31/15 - unknowingly had Asymptomatic Babs and Asymptomatic Bart, being treated now though (2/2016)

sebreg
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Date Joined Jun 2015
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   Posted 4/18/2017 12:31 PM (GMT -6)   
I'm very curious about combo'ing hyperthermia with antimicrobial therapies for these pathogens, specifically for lyme. As others mentioned though prob have to be very very careful.

"Pyrotherapy" certainly has an interesting history that is for sure! http://blogs.discovermagazine.com/bodyhorrors/2014/05/31/pyromania-syphilis-malaria/#.WPZNVRR8uRM

MAF249
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Date Joined Jan 2017
Total Posts : 119
   Posted 4/18/2017 5:23 PM (GMT -6)   
Bluelyme and anyone else who uses a sauna... do you take your temperature while you are doing this? What temperature does your body get up to and for how long?

I found a website that explains using a bath to help fight a cold. I did a bath earlier and got my body temp up to 100.4 and the water was not hot enough to go higher.

Lyme bacteria is slowed and damaged at 102 degrees F and every form of lyme will die at 105 degrees. So i am going to shoot for 102 at least on my own.

bluelyme
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Date Joined Nov 2015
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   Posted 4/18/2017 7:30 PM (GMT -6)   
Naw never brought a thermometer..but it takes 5 min to heatup n sweat and gets really uncomfortable at 15 ..i have made it to 27 min with tapping ,zanax and meditation. I feel aweful after then better next day ...

julymorning
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Date Joined Jul 2015
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   Posted 4/18/2017 7:38 PM (GMT -6)   
MAF249 said...
Bluelyme and anyone else who uses a sauna... do you take your temperature while you are doing this? What temperature does your body get up to and for how long?

I found a website that explains using a bath to help fight a cold. I did a bath earlier and got my body temp up to 100.4 and the water was not hot enough to go higher.

Lyme bacteria is slowed and damaged at 102 degrees F and every form of lyme will die at 105 degrees. So i am going to shoot for 102 at least on my own.



Actually 106. something F. @24 hours. www.mdjunction.com/forums/lyme-disease-support-forums/general-support/381563-heat-lyme-hates-heat-loves-cold

IF you are taking abx or other killer methods lower temps will help make them more effective, but again, be careful and be sure to keep well hydrated before and during. ETA: Lower meaning lower than 106. F but perhaps at 102F.

Sara Mulhern
New Member


Date Joined Sep 2017
Total Posts : 9
   Posted 9/7/2017 4:09 AM (GMT -6)   
yancync said...
My first thought was it's too soon to say "cured". I'd love to see a follow up report over the next few years. My second thought is I need to remember to look into it if DS isn't getting to a stable place in a year or so with the current treatment. Also, I wanted to know the co-infections. DS has lots of breathing issues and overheating causes him great duress. Plus the cost is staggering.


Well I am actually the girl in the news video. Right now I am currently living in California, as a full time student. I still have residual damage like hashimotos, and Ehlers-Danlos as a result of the 10 year untreated lyme but I am no longer bedridden and the other horrible symptoms that follow. I am fully functioning and I am being treated for my residual disabilities! My doctors and research shows the residual things go away with time. I'd love to keep you guys updated through this website. I'm currently thriving and living my life's dream. I can finally do school work without brain fog, and I can actually freaking wake up early like 8 am! If you have more questions leave a reply and I'd be happy to answer. I'm currently doing a mock TED talk on the Chronic Lyme conspiracy and Big Pharma making profit off of the sick. I will be posting on youtube later this month if you're interested in seeing me being active, vigilant, and most likely emotional because its a subject close to my heart (literally). <3

Sara Mulhern
New Member


Date Joined Sep 2017
Total Posts : 9
   Posted 9/7/2017 4:21 AM (GMT -6)   
Pirouette said...
I think progress is good… but I totally echo Traveler's comments - this wasn't the only treatment modality implemented, which is KEY.

And also agree that the temp-raising method can be pretty dangerous. Explore this carefully. It's certainly not an option for me - I faint when subjected to the heat of hot tubs, hot showers, hot saunas… although that is probably better now that my yeast/fungal overgrowth is mostly under control, but I really don't want to find out how scary it could get. Be careful with heat!

"Cure" is also a term people toss around but generally, you're not cured from Lyme because it's impossible to eradicate all the microbes for all the same reasons it's hard to diagnose and treat. You can hopefully eliminate symptoms and heal from damage, which I think is better termed "healed". Beware of anyone saying they are cured or can cure you.

-p


I would like to add I like the term "healed". My mother does reiki and they do it at the hospital in Germany as well. I was on IV antibiotics for 4 months, as well as infrared sauna treatment. To note, I do have POTS and Ehlers-Danlos as a result of misdiagnosis and no treatment. I faint quite often and still do. They put you under without anesthesia and monitor you constantly. I felt nervous at first about the whole thing. But as I said in the news report it was worth it. I have never felt better and if you do seek the treatment follow the strict supplement regimen. Keep in contact with the doctors and they can adjust the supplements as needed. I am being treated for my other residual diagnoses and studies show as well as the doctors in Germany's studies, that these will go away with time. The IV antibiotics killed the bacteria in my bloodstream and brain, erasing my brain fog. The sauna treatment prepared me for the temperatures, be sure to hydrate well (coconut water is more hydrating than water) and lay down in the sauna and do it slowly at first. Be careful getting up of course, and have people nearby to assist you if you feel faint. It was a lot of work and to be honest I wasn't even sure it would work or be worth it. I wasn't even 100% trying my best to get out of it I thought there was no way. But as you said I am healed, the bacteria that was in my bones and would've gone back into the blood stream has been eradicated. I am fully functioning with the assistance of my universities disability transportation for my tendency to faint. I have noticed it to be less and less in fact. I have hope and if you have your own regimen that works for you I am so incredibly happy you have found it. I am only trying to help those who feel they have tried everything and lost their way. Let me know if you have any further questions or concerns!

Sara Mulhern
New Member


Date Joined Sep 2017
Total Posts : 9
   Posted 9/7/2017 4:33 AM (GMT -6)   
Traveler said...
Let's not forget the article also said "Sara prepared with sessions in an infrared sauna and IV antibiotics. "

So it wasn't used as a stand alone treatment either. It doesn't say how long she had IV abx. While some people have had success with this type of treatment, it's also dangerous, as the body temp is raised to dangerous levels, then carefully cooled back down, with doctors watching you ever step of the way in case they have to intervene. For those considering this, please be sure to have doctors available during the process.


Yes I did prepare with IV antibiotics for 4 months prior, and the doctors in Germany stopped the IV treatment. They did Ozone, Colon cleansing, Reiki, Foot Detox, Magnetic Detox, and a form of Light Therapy. I would absolutely not condone trying a hot spring or any other temperature raising treatment without consulting your lyme literate doctor first. I did prepare for a few months with Infrared Sauna treatment and the combination of IV and Infrared is what I believe made my case so successful. They were able to raise my temperature up to 107 degrees F. THIS WAS ALL UNDER STRICT ICU TPYE SUPERVISION. Do NOT attempt this on your own. I admit it seemed scary at first but the doctors there were so incredibly vigilant and mindful of the patients. I woke up after being treat without anesthetics (an alternative) completely fine and a little loopy. The second treatment I woke up off the table extremely alert and my brain was so clear. They have a strict regimen about how they operate this treatment. Again please do not attempt this alone. I strongly suggest preparing with infrared sauna treatment (supervised if you faint), and IV antibiotics daily. I wish everyone in this feed the best of luck and hope I was helpful.

mpost
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Date Joined Feb 2015
Total Posts : 1527
   Posted 9/7/2017 4:52 AM (GMT -6)   
MAF249 said...
So I am guessing they had the same fever treatment? I may start some fever/sauna treatment at home.


sauna and hyperthermia are two different things. Hyperthermia is raising your core body temperature. Sauna is raising your skin and below skin temperature, so it does not have a big effect on the bacteria that is deep inside you.

Hyperthermia is very dangerous, your body does not like its temperature being raised and it will fight against it as much as it can, so probably the people that do this will give that person all sorts of things, fluids and medication to make sure damage to internal organs is minimized.

another way to do this is to take drugs that raise your body temperature artificially, that's also very risky. i think there was another clinic that was doing this.

some people are desperate enough they will inject themselves with malaria just so that they get a very high fever. that is borderline insane, imho.

anway, several things about hyperthermia out there, probably it works. that tells you that when you will eradicate all persisters, with some drug, you will regain health. it's probably not causing lasting autoimmune damage, to a large extent of the patients, that means if the persisters are gone, the disease is gone.... even more hope for people this will be history at some point...

Sara Mulhern
New Member


Date Joined Sep 2017
Total Posts : 9
   Posted 9/7/2017 5:02 AM (GMT -6)   
mpost said...
MAF249 said...
So I am guessing they had the same fever treatment? I may start some fever/sauna treatment at home.


sauna and hyperthermia are two different things. Hyperthermia is raising your core body temperature. Sauna is raising your skin and below skin temperature, so it does not have a big effect on the bacteria that is deep inside you.

Hyperthermia is very dangerous, your body does not like its temperature being raised and it will fight against it as much as it can, so probably the people that do this will give that person all sorts of things, fluids and medication to make sure damage to internal organs is minimized.

another way to do this is to take drugs that raise your body temperature artificially, that's also very risky. i think there was another clinic that was doing this.

some people are desperate enough they will inject themselves with malaria just so that they get a very high fever. that is borderline insane, imho.

anway, several things about hyperthermia out there, probably it works. that tells you that when you will eradicate all persisters, with some drug, you will regain health. it's probably not causing lasting autoimmune damage, to a large extent of the patients, that means if the persisters are gone, the disease is gone.... even more hope for people this will be history at some point...


Infrared sauna does have a different affect from normal saunas. I'm not educated enough in that area though but, its easy research. It's such a horrible feeling to be so desperate ): The only safe way is under ICU supervision. Infrared saunas help to an pretty great extent but do not heal to the point most lyme patients strive to be. Do some more research on St Georg Klinik Bad Aibling Germany and get in touch about how they supervise and protect you as a patient. It's a scary idea, hyperthermia (under doctor supervision), but thats all it really is. An idea, in fact I see it more as the most effective treatment I had and I tried almost everything. Some things work more for others though. Although I suspect this feed was started to talk about the treatment. I suggest research, and begin to treat with IV abx and INFRARED saunas after you are cleared to do so by your lyme literate doctor. Don't do anything by chance. Its a step by step process. Not a big leap into a seemingly "scary" treatment. Research. Read the testimonies. Contact the doctors and the administrators. And become more familiar with the treatment option. Best of luck <3

Sara Mulhern
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Date Joined Sep 2017
Total Posts : 9
   Posted 9/7/2017 5:06 AM (GMT -6)   
"Hyperthermia treatment has been around for centuries as a safe and successful treatment option for various illnesses. However, recently it has become a therapy that is gaining more popularity with patients suffering from cancer, Lyme disease, and co-infections. While hyperthermia treatment is offered in the states, it is only available for patients with cancer. This is due to the hyperthermia machines not reaching temperatures that are high enough to kill the spirochetes causing Lyme disease. Therefore, many people travel overseas to clinics in Germany where extreme whole-body machines are available."

-http://lymeandcancerservices.com/blog/

website for St Georg Klinik: https://www.st-george-hospital.com/

Sara Mulhern
New Member


Date Joined Sep 2017
Total Posts : 9
   Posted 9/7/2017 5:12 AM (GMT -6)   
From the Klinik Website:

This is nothing to be afraid of. Every operation has minimal chances of complications. And I am from Boston with some of the best doctors in the US. The doctors in Germany were far more advanced, and understanding. If the "dangers" of the treatment are what you are worried about, I would be more focused on the dangers of not getting some sort of treatment that works for you. This treatment might not work for everyone. In fact you may have you own way of handling things right now. I wasn't handling things, and I didn't want to just handle things, I wanted to feel 100% myself. It's why I'm advocating for it for those interested. Don't be afraid, be strong, and trust and contact the doctors.

"Side effects: A range of cardiovascular problems, hypotension, tachycardia, arrhythmias, etc. can occur during treatment, although these can be reduced to a minimum through careful preparation. We have carried out whole-body hyperthermia more than 18,000 times in the last twenty years, and side effects such as these have only occurred in less than one percent of cases.

Because the blood vessels expand during the heating phase, a slight drop in blood pressure is often observed. This can be countered through increased fluid replacement or the use of volume replacement solutions.

Seizures are extremely rare and are treated with intravenous diazepam. With proper positioning, only about three percent of patients experience lesions caused by thermal pressure. Burning on urination is normal within the first 36 hours, but requires treatment in protracted cases. Careful selection of patients in compliance with the above recommendations can reduce the risks associated with systemic whole-body hyperthermia to a minimum. In general, this form of therapy is considered to be highly effective and well tolerated."

astroman
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Date Joined Mar 2014
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   Posted 9/7/2017 11:45 AM (GMT -6)   
MAF249 said...
www.wcvb.com/article/belmont-family-says-experimental-treatment-cured-daughters-lyme-disease/9268783

Has anybody had this done? I'd like to be able to do this if its possible somehow. I'm at the end of my rope.


click link to the origional post/article

ChickenArise
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Date Joined Nov 2015
Total Posts : 1530
   Posted 9/10/2017 8:11 PM (GMT -6)   
Sara, please let us know which alias you will select when you are asked to choose one. Also I am glad you are better and I do hope this becomes available in Mexico for the rest of us at one tenth of what you were required to pay.

I would love to know the cost of treatment in Germany should you care to disclose this.

Thanks again and welcome.
AUG14:Mold Sick.FALL16:Clinical Bart/Borellia/Yeast
NOV16:Lung Pain. JAN17:Morg Scalp (resolved)
FEB17: Pupils, throat glow UV light.
Rx: Abx Break, Probiotic Rebuild, FLZ q72hr
Sup: Ozone, Magnets, Dental implants removed
Proto:Modified Klinghardt
Tx: self

Post Edited (ChickenArise) : 9/10/2017 10:41:45 PM (GMT-6)


Mojkce
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Date Joined Apr 2016
Total Posts : 85
   Posted 9/20/2017 5:48 PM (GMT -6)   
I am also very interested in the cost for treatment in Germany. Wonder if our insurance ie BCBS would cover anything over there? I hear the costs are very high perhaps $25,000 but I could be and hope I am wrong! Does anyone know if those treatments cover a place to stay and food as well while your there? Really interested and curious!
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