Topic: My first bionic 880 treatment ...my second, my third now
lymewreck36
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Member # 4395
posted
Well folks, my first bionic 880 treatment is tomorrow. We drive two hours to get there, then a couple of hours there, then two hours home. I'm exhausted just thinking about this, and I'll have to do it twice a week.
Any words of wisdom as I begin this journey.
Forgot to say, the treatment is with Dr. W. in Germany. I live in switzerland.
Mary
[ 07-11-2009, 01:58 AM: Message edited by: lymewreck36 ]
Posts: 1032 | From North Carolina | Registered: Aug 2003
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feelfit
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posted
Just one:
BELIEVE
Best, Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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posted
Good luck, Mary. I have had good results with the bionic 880 treatment (still ongoing) and I hope you do also.
You are in good hands with Dr. W. and his staff.
If the twice-weekly drive is overwhelming for you, could you possibly stay in the area between the two weekly treatments?
-------------------- Kaitlin Posts: 67 | From CO | Registered: Apr 2007
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bettyg
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posted
MARY, best wishes that you will have a good outcome finally
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lymewreck36
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posted
Thanks guys.
We just got home and had dinner with the kids. I missed them while we were gone. Three daughters.
Well, my husband is such a good man, and we are not rolling in money, but that does not prevent him from supporting this therapy.
We were laughing on the way home and saying that if the treatment works, we will NOT be able to call it the "placebo" effect.
I know that feelfit's advice above is to "believe," and that is what I am trying to do. But with my analytical mind, and my husband being a scientist, we are stretching our minds to believe in this therapy.
Nevertheless, we agree that I have nothing to loose at this point, so we are trying it.
When we got in the car to come home, my husband smiled at me and asked me if I felt any better yet.
I can't say yes,...I am very tired, but usually am, my feet are swelling up like potatoe sacks since I quit my antibiotics.....my heart beat has become irregular again, and my babesia leaves me swimming in water (sweat) all night long.
Don't know how many treatments it will take before I see a difference, but my husband and I agree that if we don't see a difference after the recommended 5 treatments, and I find I am able to return to antibiotics/anti-malarials, that I should resume the pill route.
What do you all think?
I begged the doctor to do simultaneous babesia treatment with the lyme treatment, and he gave me some speach about Americans always listing all their co-infections when a sick body could APPEAR to have all kinds of infections.
So his approach is to treat lyme, and then see what the body is left with.
He knows I have lyme from his little machine that he pressed on my leg with, and it registered lyme. Why can't he do that for babesia? Do his own theories and practices apply to other diseases?
I didn't want to push it with him. Right now I am trying to survive with immune system boosters and artimisinin for babs. I told him I was on artimisinin because I was just dying without it. He had no reply for that.
So that is where I am tonight. I must say that he is a very warm and fuzzy man, and his staff is also. It feels very peaceful in his office, and while I had my post-treatment detox drip, I just felt that peace and enjoyed it. Good Karma in there.
Thanks you guys for your replies. It means a lot.
Mary
[ 07-04-2009, 05:43 PM: Message edited by: lymewreck36 ]
Posts: 1032 | From North Carolina | Registered: Aug 2003
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cottonbrain
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posted
Mary, thx for posting .
When you are not too tired, cuold you explain what you did exactly in the session? And did you have to consult with Dr W in advance of the session?
Also, how long have you been ill, and under other treatments?
Do I understand correctly that the treatment only takes 2 and a half weeks?
It is wonderful of you to post your experience here -- so many of us want to know more about this therapy.
Posts: 1173 | From USA | Registered: Nov 2007
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posted
LW after the MD treats you for 5 treatments and then tests you to see if your Lyme load is down if you continue to treat a bit more after that he will make a nosode of your own blood for you and start to treat all your co-infections with that nosode which contains all the diseases in your body.
My friend just started treating with a blood nosode with Dr. W. yesterday and had some old symptoms clear from that already.
Hang in there and keep doing the treatment.
Posts: 42 | From the woods | Registered: Jul 2009
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posted
The Lyme treatment is intense and it took time after I got back to treat the other infections. I would give it time after the five treatments before starting on meds again. It's just too much to treat them with the Bionic all at once, so do as the doc says and treat just Lyme first.
I found that my babs and bart aren't nearly as much of a problem as I had thought once I got rid of the Lyme. Apparently, according to testing, they are still there, but I go day after day feeling normal. I did treat them with Deseret Biologicals for six treatment like I did Lyme. Then I treated with blood. Now I treat monthly with blood.
I returned from Germany Nov. 1 so I've had lots of time to work on this. At first I had ups and downs, now I feel good.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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lymewreck36
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Well, o.k. Let me see.....
We consulted with Dr. W. two weeks ago. He tried to explain the treatment to me, but I can't wrap my head around the concepts.
I was sick with lyme for more than 15 years, possibly decades, and am aware of different points of infection that were not diagnosed....until I saw a llmd in Dec. 2002. I was diagnosed by Igenex and by Danbury Hospital lab with lyme and babesia.
I have seen llmds in New York, Connecticut, North Carolina, Alabama, and now Louisianna. WE moved twice. I now live in Switzerland and fly to the U.S. for my llmd appointments.
I have treated babesia with high dose mepron/zith, cleocin/quinine, malerone/biaxin, artimisinin, ......
For lyme, I have had levaquin, cipro, cleocin, flagyle, tinidazole, zithro, biaxin, ceftin, omnicef, I.M. claforin, and even 5 months of rocephin, not to mention the doxy and minicin and tetracycline. I bet there are others I am not remembering.
No cure....and then I was hit this year with drug-induced lupus.
So I have had to quit the meds. I have had an occasional dose of meds to hold back acute symptoms which came back as soon as I withdrew from antibiotics/anti-malarials.....some zithro for a sinus infection.....which induced lupus symptoms.
I recently quit taking my plaquenil also, which I have been on for 7 years, and noticed I could take biaxin without full blown lupus after quitting it, the plaquenil. Perhaps plaquenil was the source of my problems.....It takes a few months to get out of your system I think, so it is too early to tell.
In the meantime, I had my first bionic treatment today.
My husband and I are the worse skeptics you can find I think. He is a Ph.D. scientist, and I am a very analytical person, and between the two of us, we hope we are not being sold snake oil. But we are open to healing coming from unexpected places....so....
Dr. W. is a very warm person, but I find the answers to the questions I put to him very vague and frustrating. For example....why not treat lyme and babesia at the same time?
He wants me to be off all medication, but he will not treat babesia right now? And then there was the suggestion today that people "think" they have babesia and other co-infections, but really it is lyme or a sick body mimicking other illnesses.
Nothing bothers a chronic lyme patient/activist more than a doctor suggesting you don't know if you have babesia or not, even when you are screaming with symptoms....every babesia test comes back positive, and withdrawing malarial medications makes it flare up.
NOthing worse than a doctor who won't validate you after you have learned and suffered as much as I have.
He even said to me...."why are you takiing malaria medication for babesia?"
Oh my God, and I'm putting my money and trust in this person.... you see what I mean....?????
So I went silent on the babesia front after I told him I would have to continue to take artimisinin for babesia if my symptoms continued to be out of control.
You know, this disease IS dangerous, especially when you have central nervous system symtoms with it, and irregular heart beats.
So...o.k. We began my treatment. I was put into a little space closed off by curtains, and the bionic machine sat next to me. The nurse came in and told me to hold the machine to 10 specific places on my body. She gave me a chart which numbered the places so I would have these instructions.
For each place, I was to hold my bionic "wand" on it for five minutes. My prescription for treatment asked for full power coming from the machine...100%.
I was also given a liter of water and a glass and told to drink it all.
Finally, there are little bottles of lyme bugs taped to your abdomen. Don't laugh folks at my lack of correct lingo. Please jump in to fill in the correct language for me. :-)
The places to hold the wand are inside of wrists, on the ears, top of head, forehead, under the neck both sides, chest, and abdomen. Ten places in all, always going from the right side to the left side....right wrist then left, right ear then left....etc.
I did all of this and drank my water, which took one hour. For this process you sit in a comfortable chair that reclines and raises your feet.
When that was over, I was told to use the bathroom if I needed, then I was put on an I.V. drip to help my body deal with toxins. I was told the I.V. had magnesium, support for liver detox and kidney, other stuff I can't remember, and bicarbonate to make the body alkaline, not acid.
This drip took one hour also.
All in all, I was in the office 2 1/2 hours for treatment.
The atmosphere is always pleasant and warm, and relaxing.
Funny thing about the treatment time.....and doctor claims....
You are prescribed five separate treatments. Treatments have to have two days between, so he schedules treatments for Mon/Thurs, or Tues/Fri, so that a person can have two treatments in a week. Total treatment time to get in the five treatments then is two 1/2 weeks, five separate visits you see.
He claims in his literature that he has a 95% cure rate , and then I noticed when reading a flyer in his office that it says that if you have the treatments and are still having symptoms after the treatments, then you didn't have lyme to begin with.
Upon talking to him about this, he explained that his machine tests for the bugs, and would test for lyme. Some kind of calibrating machine. I'm sure another patient will chime in here on this thread and remind me of the name of it. Again, no laughing please.
The machine said that I had lyme, and had it for decades and was very sick. This I already knew, but felt comforted that his machine wasn't going to argue with me.
So....I would do the five treatments, then have a month off for the photons to keep working he says. Then....we retest with this machine to see if I am cleared of the infection, or if I have it still. If I still have it, we treat more.
All of this is okay dokay if that machine is omniscient.
All of this, and the babesia is NOT being treated, and I'm supposed to stay off babs medication.
The theory here is that maybe I don't have babs, and I just think I do, he says (my blood was boiling at that comment).
Now, I am fully aware that we don't know everything about the human body and its mysteries, so I am willing to try to test his theory...but I do know that I have babesia.
I find that my situation is asking me to be off medication to figure out what to do about my drug induced lupus. So I am forced to stay away from medication.
That makes doing bionic 880 a natural alternative that I have nothing to loose doing.
Tonight my legs are huge with swelling. I hoped that my first sign of something happening would be the leg swelling going down.
So that is what I know so far. I am in no way well versed in bionic 880. I only relay my own, personal impressions at this early stage in the experience. That is all. I am not concluding anything right now about the experience.
We shall see.
Hope that helps, and I didn't offend anyone.
Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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Mary, treating the Lyme first lessened the severity of babesia for me. I and my LLMD always thought my babesia infection was as bad as the Lyme, but when the Lyme was gone, I realized it was not.
Dr. B used to treat nothing but Lyme and treatment went on for years and years, then the coinfections would resolve themselves once the Lyme was gone. I have heard him say this in a talk ..... then they discovered that treating the coinfections simultaneously lessened treatment time. Taking that theory into account makes more sense of what Dr. W is saying.
I waited the month, then treated the Lyme again since I'm in the US. You can read my entire progression in my blog starting back in Oct. Now I'm well and hardly think about Lyme except from my friends who have it.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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lymewreck36
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Hi sixgoofykids:
I did read all of your blog before deciding to do this treatment. Thank you for all the time you put into doing that for all of us.
Your blog pushed me into trying this....yes, so thanks.
Like I said, my mind is open, so we shall see what happens to me. But right now, I'm feel like I'm out on the empty ocean with no flotation device.
Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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It is something you have to take on faith .... I don't even know that the good doctor can even explain HOW it works .... maybe theories on how, but not for sure how.
When you treat with the blood, that is when you get the rest of your specific infections ..... so if he seems aloof about what else you might have, that is most likely why. Your blood and saliva have all the information for what you have.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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seekhelp
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Wow, that sounds pretty goofy Lymewreck36. Not sure I could buy into all that at all either, but I wish you the best.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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lymewreck I think the bicarbonate of soda is very good for the human body. I also think it is a bit salty for my kidneys and it usually makes my ankles swell a little the next day after the magnesium IVs.
If it was me I would just try and stay as open minded as possible and give the analytical part of my brain a vacation for the next 3 weeks and try and relax and follow the MD's instructions. I know that keeping an open mind can be difficult at times. I think going through the treatment with a positive open mind can only help you and you plan to do the treatment anyway so try and stay open. This doctor is experienced. The fact he tested your thyroid when many LLMDs don't always catch thyroid issues is good.
I do think the doctor gets lots of positive results with many patients. It seems you have done a lot of abx already so why not try something new? You are lucky you already live in Europe. Many of my friends with Lyme would do almost anything to be able to go to Germany and treat with Dr. W. Try and relax and have faith and be grateful he is only two hours away from you not 11 or more.
Posts: 42 | From the woods | Registered: Jul 2009
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tickbattler
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lymewreck - I am watching this post and hoping you see good results! I have a feeling you will, but I'm sure it will take some time. What sixgoofy says about the coinfections makes sense.
Please keep us posted. Like you, I need to understand how things work, but I also am open-minded about treatment options. I would do the same as you if I were in your shoes. My entire family is infected and if we don't see results from abx, we may be over there too.
sixgoofy - thanks for all of your updates. It is wonderful news that it worked for you. I have not read as much as I should about the bionic, and one question I have is about safety.
Did you research that aspect and what did you find out? Are there any side effects besides herxes? How many years has the machine been in use? Do you understand how the lyme is killed while other things are not damaged?
posted
My understanding is that what is actually happening is the light is strengthening the body. The body itself fights the infections. The reason for the nosodes is to get the pathogen into the body's energy field so it recognizes it's there. The light itself doesn't kill the pathogens.
I believe it's close to ten years that it's been in use for Lyme???
There is also a lot on a cancer experiment they did with kids. The kids would get mouth sores from treatment and the light would help the sores heal.
I think the biggest risk is of overuse. If you overuse it and your body starts trying to kill pathogens faster than you can detox the toxins, that is when you can get into trouble. I have used it very sparingly. I also let the Bionic do the work for months and only did other treatments that helped with detoxification.
Marnie has posted a lot of information, though it's hard to understand completely, it explains exactly how the light strengthens the cells.
It may only take three weeks in Germany, but the treatment is ongoing. At this point, I am about 100% well (KPU and parasite treatment has gotten me the rest of the way here). I still treat monthly for maintenance and because babs and bart still show up on muscle testing though I have little in the way of symptoms from them (though I haven't been tested again since KPU and parasite treatment).
Even though I'm doing little now, I treated for several months when I returned. Lyme monthly. Babs, bart, then blood .... three weeks of treatment, then a month break between. I found I made as much progress during the breaks as through the treatment.
It's a great treatment. It, like anything else, takes time and perseverance.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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lymewreck36
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O.K. you folks are still in bed, middle of the night, but it is morning for me in Switzerland.
I slept well last night....
I feel a little lupusy this morning. Just a little. I was afraid that the light therapy would cause a lupus flare up, but it seems pretty safe. I would have had a full blown lupus flare by now if it were going to happen. So I am relieved about that.
I'll keep you posted.
Gee, it sure is nice to go through this with all of you, instead of alone. I mean, I'd rather none of us were sick,.....but, here we are....together.
Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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That's good news, Mary! It was after the fourth treatment that I started feeling a difference. After the first one I felt weird .... not bad, but not good either, just weird.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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ukcarry
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Good luck, Mary!
I should try to suspend analysing what is going on with the babesia for the moment [you can always do that later!] and try to go with the flow of the treatment Dr W offers: that should be more relaxing for you.
Hope you see good results,
Carry
[ 07-06-2009, 06:48 AM: Message edited by: ukcarry ]
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gemofnj
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Mary,
Thank you so much for sharing. It is wonderful that you are willing to try a new approach.
I hope you have as much luck as Six in your recovery.
I find the stories very fascinating, and hope that someday soon we will have a 'breakthrough' that will work for everyone.
Who knows, maybe this is it.
(Thank you for keeping us posted and informed) Best in health!
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Truthfinder
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Best of luck, Mary.
Though this type of therapy may seem far from being `scientific', I think history will eventually tell a different story.
Selma (Brussels here on LN) recently reminded me of a couple of articles that you or your hubby may wish to take a look at. Though it won't necessarily explain why this treatment works, it may give you some insight as to what homeopathy is, and why biophotons and homeopathic remedies may work well together in the therapeutic realm.
Or, it may seem to you like just more talk about snake oils. You'll have to decide that for yourself.
As for Dr. W's resistance to treating Babs at the same time, if he doesn't have much experience treating Babs, do you really want him experimenting on YOU? Babs may require a different frequency/ remedy combination altogether. Let him work that out. I think the prevalence of some of our American co-infections is still baffling to him.
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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Babs does require a different frequency and remedy. I treated it after Germany .... I waited a month, did another Lyme treatment, then started on babs. Did another Lyme treatment after babs to be sure I got any Lyme the babs was hiding.
My babs is slowly letting go. Air hunger is my only remaining symptom from it, and it's lessened in severity over the months. I go in spurts with drinking high quality tonic water in addition to continuing treatment with the photons and blood (which contains the info for babs).
Lyme and babs just can't be treated together with the photons. Even if you did them both in the same day, it would just be too much.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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lymewreck36
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Hi folks:
I will read through your links Truthfinder. Sometimes I get really lost in "lingo" though, but I'll give it my best shot. There are a lot of medical references that just fly over my head. I'm a literature student, not a science one, but I'll run them by my husband as well.
Thanks to you and everyone that sends a link my way to help me understand. My husband has said several times that he doesn't believe in this "treatment," but here we go spending over 1,000 Euros on this. When your health is gone, who really cares.
I had to take one Malerone today. I was so tortured by babesia last night, that I woke to crying fits today. Seems I just can't take one more day of it.
But the one malerone has dredged up lupus symptoms. My abdomen feels like hell, and the last few ribs on each side feel like they were dipped in acid.
I could just double over for the rest of the night.
God help me. How will I survive it.
I really want to see my grandchildren one day. That is what keeps me going.
Mary
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gemofnj
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Mary,
Sorry to hear you are having a bad day. Sounds like you are hitting something.
I think you are brave to give it a shot.
Hope you are feeling better tomorrow. Having grandchildren is a wonderful thing to focus on.
Posts: 1127 | From atlantic city, nj | Registered: May 2008
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Mary, when I was in Germany, I had terrible night sweats every night for over a week. I think the photons did bring out some of the babs, but it stopped after some time. I know how badly you can feel, but I would encourage you to stay away from the bug killing drugs that interfere with the photon treatment. Hang in there. The treatment is INTENSE.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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lymewreck36
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Today I had my second treatment in Germany with Bionic 880.
Before I comment on that, I want to say a few things about what I have experienced since my last appointment.
For 7 years, it has been the case that I have terrible swelling all over my body, but most visibly, in my legs and feet,... if I don't take my antibiotics.
It took almost a year of treatment in the beginning to get the leg swelling down to normal, despite using diaretics with my antibiotics. It just would not desist.
Anytime I have stopped my medication for a few short days, the swelling has come roaring back in.
Now, I have been off antibiotics for almost 8 weeks, and have been swollen to the point of misery. I did take zithro for 5 days for a sinus infection as I mentioned above, and followed it by one week of biaxin, and the swelling disappeared again.
But I quite the biaxin 3 days before my first bionic 880 treatment in order to comply with the doctor's wishes.
The day of my first appointment last Friday, I swelled to record proportions following my first I.V. drip.
But by Monday, the swelling had made remarkable progress, reducing to almost the same state as if I were taking antibiotics.
Today, despite driving four hours in the car to and from my doctor's appointment, and almost 3 hours sitting in the doctor's office, my ankles have no swelling whatsoever.
I am holding my breath.
Almost two decades ago, when I planned to have my first child, I read in a pregnancy book that a baby can die in the uterus, and the mother might not even know it. I brought this book to my husband is shear terror, and he told me to close it, that things like that would NOT happen to us.
But, during my third pregnancy, I was told what defects my baby had, when I was 20 weeks pregnant, and that she would die despite me carrying her full term. So I carried her, we waited, planned her funeral, and she died during delivery at 35 weeks gestation.
And a few years later, I finally had my diagnosis of lyme disease (which I think is what killed my third daughter).
I ran a girl scout troop at the time, and a parent noticed the pic line in my arm. I explained I had lyme disease...I was 36 years old at the time, hence my name in this forum...."lymewreck36."
The parent looked concerned and told me, "you know, that can be really impossible to get rid of."
I just smiled this smug smile, now that I think about it. I knew I had knowledge on my side, which most lyme victims dont' have in the beginning. I had done all the research, knew all the tricks, knew how to get a llmd, a pic line covered by insurance,....etc.
I also had God in my back pocket...I thought. I knew that God would see to this healing, right away. I was NOT like those other people in wheelchairs who could not get rid of lyme.
This was 2003.
By early 2004, I was floxed by fluroqinolone antibiotics, damaging my central nervous system, all my tendons and ligaments, and putting me in the hospital for emotional breakdown.
I remember crawling on the living room floor, hyperventilating, crying, and wondering how God could answer my prayer this way.
Then, I was humbled.
I have never put my faith in anything since then. And I am afraid to now. So, I hold my breath, and wait.
But something is different, after just this one treatment.
Do I still have hoards of other things wrong with my body, lyme and babesia....oh yes, absolutely. I am not seeing a light at the end of the tunnel at this early date.
I'm afraid to say more.
Today I went to my second appointment. I knew the routine. Arrive to the office, go to the treatment room, sit down and administer to myself the bionic treatment on the 10 positions instructed. Drink the liter of water.
Then, the I.V. drip to assist the body with detox. Lots of smiles in the office and a warm handshake from the doctor, and I'm in the car driving the two hours to get home.
I guess I have to say right now that I am afraid. NOt sure what of...what might not happen maybe...
Must get rest and I'll let you know tomorrow how I sleep tonight. Sleeping through the night has been actual WORK. I miss the days of sleeping 10 hours at night, when I was on my antibiotics.
Wishing wellness to all of you, Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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tick battler
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WOW Mary! The fact the the swelling has gone down is pretty amazing.
I would be interested to hear what Dr. W would attribute that to. Perhaps the detox? Or maybe the treatment itself!
Keep us posted. This is very exciting.
Hang in there. It sounds very hard. You are very brave!
Best,
tickbattler
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Thanks for the update. I'm happy for your progress.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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lymewreck36
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Slept like a baby last night, and dropped tons of fluid yesterday. Very interesting!
Mary
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Truthfinder
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"Very interesting"? Boy, I'll say.
I don't want to get overly exuberant, so I'll just give a small
.... though you might want to think about changing your name to LymeWrecker....
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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Brussels
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I wrote you in the PM.
Most people doing the Bionics follow the pattern: before they do the sessions, they are all obsessed by killing, killing, killing.
A few months later after the treatment, all of them are not anymore on the killing obsession! They are trying to find other alternatives to build the immune system, detox etc.
That is why I think it works! For the Bb killing, I mean!
I hope you'll be also someone like that. Crossing fingers for you!
Posts: 6199 | From Brussels | Registered: Oct 2007
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lymewreck36
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Member # 4395
posted
Very funny Truthfinder! I'd love to change my name to Lymewrecker, but we will have to wait and see on that one.
Brussels, you say you wrote me in the PM? Do you mean you sent a private message? Because I don't see one from you. Or did you mean something else?
ARe you saying that most people that do the bionic 880 are "cured" so they have time for other therapies? Or do they just stay off antibiotics and work on gettng the body to do the killing?
Anyway, if you mean "cure," then I also hope I am one of them.
Who are these people anyway, and do the bionic 880 people have one place where they post messages?
Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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lymewreck36
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posted
I forgot to mention, I have been so exhausted all day. I slept 10 hours last night, which is very unusual for the being off antibiotic pattern. And I have felt all day like I could just become one with my bed mattress.
It is like the fatigue after a long battle. Just exhausted.
STill no swelling in my legs. I can't get over that. All those medications to get it down, and now it is just down by itself.
Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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Cass A
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posted
Dear Lymewreck36,
Sounds like you're making some good progress!
Please continue to keep us updated!
Best,
Cass A
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
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lymewreck36
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posted
Haven't felt well at all today. Like I could just dig my grave and get in.
What could it be? Well, I quit taking plaquenil about 2-3 weeks ago. Maybe the blood levels are just beginning to drop off.
Maybe because I quit taking the very, very low dose ultram I was on 3 days ago.
Maybe because it is a herx.....6th day since my first bionic 880 treatment, but the doc said I wouldn't herx on this treatment, just feel better.
What ever it is....very discouraging. I hurt so much, and am so tired..I don't know how I can drive myself to my appointment tomorrow.
Leg swelling still down though. :-)
Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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linky123
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posted
Praying for you!
Linky
Posts: 2607 | From Hooterville | Registered: Apr 2009
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lymewreck36
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posted
Hi folks. Just got back from my third bionic 880 appointment.
Well....my pain level might be a little better than yesterday, but the fatigue in incredible. Perhaps this is my body working hard?
I really have NO way to gauge what is going on in my body. Very little response on this forum from previous bionic users...and the doctor is very absent at my appointments.
This is something I wanted to comment on. I have to wonder how the doctor can interpret how your treatment is doing when he doesn't talk to you at appointments. There is the consult before you begin treatment, with little note taking. Most of what the doctor bases his perception of your condition on is what his machine tells him.
Then, during treatment sessions, you get a handshake sometime during the photon application.
So I have to wonder, if I asked him if I were supposed to feel this way by treatment three, how would he know if he hasn't questioned people and kept records along the way? How would he know what a person like me might feel like at appointment three? How would he know if I might have a delayed response to feeling better, or immediate relief?
Seems that everything hangs on the machine, and what the machine says after your five treatments. If the machine says I no longer have lyme, then that is it. I don't have it. Just "symptoms."
If the machine says I don't have lyme, and I don't have symptoms, who am I to question!!!!!! That would be just fine.
But what if I do have symptoms.???? Retreat???
When you walk into the office, the lady at the desk tells the doctor you are there, and then tells you to go to the treatment room and begin therapy.
You go to the treatment room, she brings you the water you must drink, and sets up the photon machine, and you pull the curtain and begin.
Then, when you are done, the I.V., and you go home.
I guess I haven't known what to expect from an appointment, so anything I learn about this procedure is surprising.
(perhaps he reads the posts online? so he would know how I am doing then. When I first came to the doctor, he asked me if I heard about him from lymenet.
The office was busy today, and when I was in my little curtained room, I heard another American sounding voice in the farthest room. I introduced myself through the curtains, and so did she.
She told me some of her story. She is from Miami.....not a lymenet user right now, but I told her about you guys. She has been very crippled from tick born diseases, and she feels miraculous improvements from treatment. Today was her fifth treatment.
We never met face to face. But she sounded happy with her experience. I did not inquire further, about the future for her.
As for me, I do believe inside that if I weren't doing this therapy, I would be worse off today than the way I feel while I am doing the therapy.
No one has told me how they felt after treatment three. Not even the doctor has commented on it.
Groping around in the dark here.
Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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posted
Hang in there and don't get discouraged. I did not start to feel really better until the end. I did have improvements but they were subtle and luckily I did not have any super fatigue but everyone is different. I did do a lot of mineral baths for help with detoxing so if you can find a sauna or mineral pool use it. Bad Wildbad has some super nice mineral pools and Ms. Florida can tell you how to get there and which ones to go to. She was my mineral pool partner in crime. She also can take you on a fun shopping tour of Germany but try and save some money for treatment if possible.
Ms. Florida was not on her 5th treatment. She did her 5th treatment before I did and I just did my 6th the other day.
Joking with her made my Bionic Treatments and IV's not bad at all. Next time you run into her ask her if she has come into contact with any bears in Dobel on her late night walks.
She will turn your treatment time into a sunny hour for you if you get her joking. She is getting better. I miss my treatment and walking shopping dining and soaking and floating buddy and had to take a walk last night without her. Next time you see her tell her her treatment buddy says hello.
Posts: 42 | From the woods | Registered: Jul 2009
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SForsgren
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posted
Mary, that is how it works. There is generally not a need to see the doctor for every treatment session. Just go with it.
If you constantly question the process, the process will not work for you. You will sabotage any potential benefit. The mind is powerful and if you believe it will not work, chances are it won't.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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lymewreck36
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posted
Hey Scott, I'm examining the process and relaying my experience and thoughts/reactions to it as I promised people in this forum I would do that for them.
Also, I think it would be helpful to me and others if, instead of telling me to stop asking questions, you actually gave some feedback.
There was another thread about a week or so ago asking if some bionic people would be kind enough to explain the process, or something like that, so I am being thorough.
I noticed no doctor visits with the treatments, so that is what I report.
I noticed that there was no one to ask how I should feel after treatment three, so that is what I report.
Got it!!!! :-)
I think maybe it might bother some people for me to think out loud, but that is how I present my expereince.
People want to know what they are getting if they spend the time and money to come over here, and since I promised to tell all, I am telling exactly what happens. I feel the responsibility to do that, because I said I would.
Dr. W. is always a smiling, warm presence. I never doubt that he is concerned and watching. But the contact is very little during this part of the treatment. It's not a bad thing to say that.
And I am learning that there is less "clinical observation" in this process than "technical application." That is an interesting and surprising piece of information I have stumbled upon. I'm learning.
And examining this treatment protocol DOES NOT preempt faith. The two can co-exist. It is dangerous to think that they cannot.
No one should feel threatened by examining something.
Mary
[ 07-10-2009, 03:43 PM: Message edited by: lymewreck36 ]
Posts: 1032 | From North Carolina | Registered: Aug 2003
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lymewreck36
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posted
Hey Bamboo, I think Ms. Florida might have told me this was her last treatment, and my mind called that the 5th treatment? Hard to say since I am so tired I can't be sure.
My treatment today included 6 hours of driving to do it. Traffic was bumper to bumper stand still on the highway back to switzerland.
I do bobble in the thermal mineral baths from time to time in Bad Sackingen.
But with packing my oldest to be off to college in the U.S., and company arriving on Sunday to spend a week, I'm not able to even nap.
I guess everything has its trade offs. I don't fly over here, spend that money, and stay in a hotel.
However, I have to attend to my daily life with my family while doing the treatments. That is just how it works out for me.
I caught onto Ms. Florida's sense of humor right away. I first asked the mystery person behind the curtain if she were another American, and she said "no!"
I was silent for a second. I'm thinking, Canadain? And she confessed she was from Florida.
She has quite a story to tell. WE all do.
So Bamboo, are you in treatment for a while longer. Might I bump into you?
By the way, I think the I.V.s are really a big part of feeling better. That is just my gut feeling. Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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lymewreck36
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Gosh, I forgot one more thing. For someone who is tired, I sure am long winded tonight.
I shared the links sixgoofykids put in this thread about light therapy with my little sister. She is always interested in what I am doing with my illness.
And she sent me an email back that it was funny that I am doing this light therapy. Her very young son has type I diabetes, and she said she has read about a new procedure that uses far infrared light to treat type I diabetes.
I'll have to ask her for a link so we can all look at that. Sounds like we are all on to something.
Mary Posts: 1032 | From North Carolina | Registered: Aug 2003
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posted
lymewreck - without knowing much, could that be the language barrier that causes less communication? You speak German or he speaks English?
Isn't this teatment aiming at building up your immune system instead of killing the bugs? I am pretty confused with some conflicting theories even within this thread.
I too wish you a good luck and will be following the thread.
Posts: 822 | From midwest | Registered: Apr 2009
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posted
It builds up the immune system and directs the immune system to kill the bugs .... more or less. It is directed to the Lyme .... if it were just an overall immune system building, then the other bugs would be killed, too, but as it is, most of us have to go back and kill the other stuff later.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Ms. Florida will be around a bit longer so you might run in to her again. Last I heard she was going to still do some more treatments. I had to head home after our shopping spree last Tuesday due to spending all my Euros. Ms. Florida held a gun to my head and made me buy far too many items of clothing for "Your new life".
Actually you and I were treating on the same days for a bit just different time slots so we never ran into each other.
I finished treatment last Monday and the MD told me to go home and treat again in one month after he tested me with the Bicom 2000 and his Biotensor on Monday for Lyme and cos. Because my health has improved I used the Bionic 880 only with no nosodes and no IV's afterwards on my last treatment as instructed. He did not want me to over treat after he tested me and he found out that my spirochetes were not bothering me at the moment. I still have some cos too deal and with but for the moment I am feeling some what better.
He wrote me an Rx for 5 more magnesium zinc etc. IV's to use in the USA after my next five Bionic 880 treatments. I dragged home all the ingredients in my carry on.
If you want to talk to the MD more often you can arrange appointments with him and there will be a charge but it might help you get some assurance and questions answered. If you husband ever feels like calling or emailing the doctor I would still like to know about the MD's positive thinking instructions that he gives to all his German speaking patients.
If you want or need a acupuncture treatment let the receptionist know. Ms. Florida had one that really helped her gums and mouth feel better. Another person had a spinal adjustment that helped with her headaches.
The treatment can and does work for some! It certainly at least for me was better and faster acting then taking abx and Mepron and Malarone.
Posts: 42 | From the woods | Registered: Jul 2009
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posted
Ps I did clear bart at least for the moment and I had bart at the start of treatment when I was first tested.
Posts: 42 | From the woods | Registered: Jul 2009
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posted
Thank you for the clarification about how it works, sixgoofykids.
Not that I don't have any more questions on how one could build up immune system specifically to fight Lyme, but I guess it sounds good for now.
Posts: 822 | From midwest | Registered: Apr 2009
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posted
Well, the nosodes direct the energies to Lyme ... that's very simplistic, but basically that's it. I mean, it makes you stronger, for sure, but the nosodes point out Lyme.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Truthfinder
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posted
Mary, you said: **''So I have to wonder, if I asked him if I were supposed to feel this way by treatment three, how would he know if he hasn't questioned people and kept records along the way? How would he know what a person like me might feel like at appointment three? How would he know if I might have a delayed response to feeling better, or immediate relief?''**
After treating thousands of patients, I'm sure Dr. W. feels like he has `seen it all' at every stage of the protocol. If you were only his 20th patient using the Bionic, I suspect things would be different.
If you read most of the blogs out there posted by Bionic users, I think you probably found that no two people had the same reactions, whether it was treatment 1 or treatment 3...... what I do remember from most of the blogs is that some degree of fatigue happened to virtually everyone during the course of treatment.
Wow, you have so much OTHER stuff going on right now! Frankly, I'm amazed at what you are able to do, not the least of which is driving yourself to and from the treatments! Just my opinion, but I think you've done amazingly well, so far.
Hang in there.
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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lymewreck36
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posted
Thanks Tracy, but I feel like hell. I can't believe how much a human being can stuff down and keep going. It is pure torture. My life never stops for me to get off, and no one seems to understand that. No one in my household understands that mother is next to needing an emergency room, even though they all have lyme.
The problem is that they are all high functioning lyme people, with medication.
I could crawl into bed at any moment and never get out again.
Company tomorrow,....if my husband knew what it felt like in my skin, he would have told them to get a hotel.
I have to say for all of you watching my post, that you must remember that I am struggling with lupus, and I have been suspecting that the "light" in this treatment is causing some flaring.
I have indicators that it is flaring.
Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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Sorry, Mary, the light treatment is not easy at all. Be sure you get lots of rest (I read three novels the first two weeks of treatment because I was resting so much) .... you need the rest to heal.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Sorry Mary that you are going through this and I hope you start to feel better soon.
I just wanted to say for other people reading this who might be considering treating with light that I did breeze through the treatment with the only a tiny bit of herxing in the form of night sweats. My herxing was basically not note worthy. I had no heavy added fatigue during treatment or any discomfort so everyone is different and not everyone has a difficult time during treatment. Some people do.
I think it is important to get time alone and rest and take saunas, detox baths or do mineral pools and not to make any big plans for the first 3 or 4 weeks of treatment.
It is important to have a restful comfortable relaxing environment so camp grounds are out. Time alone is helpful when killing bugs and waking up the immune system. Walking being surrounded by beauty and detoxing and taking time to visualize a new healthy you are all important. Eating well is important too.
Mary is there anyway you can get away from your family while doing the Bionic 880 treatment and stay somewhere more restful so you are actually able to receive the treatment as the MD intended? I just don't want to see you not being able to rest while spending so much money on treatment.
Posts: 42 | From the woods | Registered: Jul 2009
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lymie_in_md
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posted
Mary -- I highly sympathise with anyone with lupus. It is problematic in your treatment, but you made a choice to find some manner of arresting lyme from your body.
I suppose it is best to look at this as a great opportunity to heal. As some of the others are saying, your body is transforming from point a to point b, rest and a positive frame of mind are sooo important. So imagine this period of time is like a moth in a crysalis and hold on to that hope.
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
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cottonbrain
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posted
Mary, I appreciate your thread so very much. In my opinion, you are right to question. And your details are really helpful.
Especially since there are no definitive studies or even polls to show how many succeed on the therapy.
That's why people like me are so appreciative of your honesty. I really wonder if many of the people who report success with the treatment have started out at a higher functioning level than you, and thus it is easier to mop up the remaining infections for them?
For instance, people who underwent treatment are saying that they walked, shopped, flew on airplanes, went to restaurants, soaked in hot tubs, or read novels while undergoing treatment. Wow!!!
For many of us, doing any ONE of those activities would send us straight to bed.
Please continue to keep us posted and to let us know when you have questions, and whether they are answered; also, we like hearing when you notice improvements (such as your leg swelling -- has it sstayed down?)
And thanks to the other users of this treatment for keeping us informed as well. Posts: 1173 | From USA | Registered: Nov 2007
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I think many people will continue to be disappointed by this therapy if they expect a cure. For those us that have gotten to the point where we need a therapy like this, there will not be a magic bullet. At least not that I can imagine. For there to be a magic bullet, you need to have the right combination of detoxification genetics, methylation cycle genetics-- in which case antibiotics alone just might do it.
But we are not so lucky. We are here because we don't have the right combination, and in the process there are many vicious cycles in our body to attend to and reverse. Most of us have major emotional traumas, some physical traumas that just add to the overall body burden when you can't detoxify toxins and bugs.
However, I have a suspicion that with time, biophoton therapy will be one therapy that can be a jack of all trades. It can do so many things: reverse allergies to allergens, foods, pathogens, resolve emotional disturbances, help the body fight pathogens, reverse hormonal deficiencies, detoxify, and even help restore imbalances in the invisible (to naked eye) biophoton field that surrounds the visible body.
Of course, for us to reap these benefits now, we need to be very proactive in finding out what our body needs on a weekly if not daily basis. It is very very easy to think we're not overtreating when in fact our organs are already overloaded without manifesting any signs of such. That is what has happened to me on so many occasions. But when I know exactly what I need to treat and what my body can handle, I feel like I'm in utter control of my body's healing and destiny. I suspect there are others that are farther along with energetic treatment that feel the same way.
Mary--I hope you keep a positive attitude regardless of where you're at by the end of your trip. This is a great big first step you are taking to heal. Just realize that our journey isn't all about killing lyme.
Posts: 713 | From Los Angeles | Registered: Oct 2007
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posted
And I wanted to add: I am certainly not one of the patients that could do much more than walk for 10-15 min a day when I was in Germany. Scott, Six, and Paul can all attest to this. i've outlined my progress very meticulously in my blog. Of course, maybe a little too meticulously (I tend to be on the verbose side) which may make the trends hard to catch. But I suspect no one that is truly curious about this therapy and has taken the time to read my blog can say I've left many stones unturned and haven't made a ton of progress in the last 9 months, much due to photon therapy
Posts: 713 | From Los Angeles | Registered: Oct 2007
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posted
I can vouch for mOjoey, he was in rough shape when he arrived in Germany.
Cottonbrain, I am hoping you did not intend to imply the rest of us were dishonest .... I am working on the assumption that is not what you meant.
I spent two days in bed after the flight over there except to go get something to eat and go to the grocery .... and the doctor .... only stuff that had to be done. Yes, I read books because I was lying in bed most of the day. By the last week, I wasn't reading at all because I was busy most of the time.
By the time Joey got there, I was highly functioning and only found the baths my last week there, so only got to go one time. I saw drastic improvement after the fourth treatment.
I, too, blogged and kept meticulous records of exactly how I felt all along.
When Dr. W tested me for Lyme with is Bicom 2000 he was very surprised how poorly I tested and was of the opinion that I have had Lyme for a very long time. My reading only went up to about 10-15 when it should have been at 70-80, which is where it was when I left. So, even though I had had long term abx, Lyme was still a major stress on my body.
So, it's not just highly functioning people doing well with this treatment.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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cottonbrain
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posted
Hey Six, in no way was I implying that anyone was being dishonest. On the contrary, I think it is great hearing from ALL of you on your treatment.
I said, "I really wonder if many of the people who report success with the treatment have started out at a higher functioning level than you, and thus it is easier to mop up the remaining infections for them?"
That's what I meant, and I'm appreciative of your explaining what your situation was.
Mojoey, lots of us can't read through the blogs that you and others have so painstakingly put together. We just skim on good days. So thanks for letting us know.
You are all doing us a service by reporting on your outcomes, and I don't think anyone here would disagree, especially me. Posts: 1173 | From USA | Registered: Nov 2007
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posted
It wasn't only that statement alone ... it was almost the whole post that made the implication .... it's hard to know what people mean since so much of our normal communication is through body language .... that's why I always assume the best.
I was only high functioning on heavy medication. Once off heavy meds, I would crash, which is where I was when I went to Germany. I believe the only reason I could get there myself was due to adrenaline the day I went over.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Dr. W. said when he tested me on the Bicom 2000 that I had Lyme over 20 years and that 80% of my energy was taken by Lyme. I have had all kinds of horrendous symptoms in the past such as non stop panic attacks, anxiety and insomnia that left me un-able to work or function to my most recent issues of lots of fatigue and lack of stamina along with ADD poor concentration and low thyroid just to name a few. I also had before Germany active EBV and CFS.
Flying makes me very ill and I arrived in Frankfurt in bad shape with a bad headache and I was feeling very nauseous. I felt like I needed oxygen on the flight yet did not ask for any. There was a child having seizures on our flight and I did not want to add my problems to the problems already going on. On the 11 hour flight home I did fine.
I do think looking back on it that the photon treatment did give me added energy and perhaps the thyroid Rx I started while I was there did so as well. The thyroid Rx though is not the fast acting kind of thyroid medicine so I am not sure if it helped or not or is even helping yet. For some reason today I am feeling rather low energy and that could be due to other variables such as jet lag or possible mold.
The further I was along in my treatment in Germany looking back on it the more energy I had. I had not been on any medication for well over a year before treating in Germany. I was taking some Buhner herbs until two weeks or so before leaving for Germany. Dr. W. advised me to treat again in one month after returning home and to try not to take a lot of supplements.
Normally shopping wears me out and in Germany it started to after too many hours spent trying on clothes. Floating in mineral pools sometimes gives me herx like symptoms the next day but in Germany it made me perhaps more tired the next day but seemed to be a good aid for me for relaxation and detoxing.
Posts: 42 | From the woods | Registered: Jul 2009
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seekhelp
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Member # 15067
posted
Is Dr. W using ART testing or simply hooking people up to a machine to give him all the answers? If one had access to a Bionic 880 and his diagnosis machine, along with IV supplements, could one do the treatment in the U.S.
I didn't realize much of the treatment while in Germany is self-administered by the patient. Very unusual. What if one has a severe herx reaction? Does he have a medical staff trained for emergency situations? Hospitals nearby? Under a universal health care system, wouldn't a U.S. resident be in HUGE trouble overseas since not entitled to emergency care if your domestic health plan doesn't provide International travel health coverage?
I guess I think about too much. lol. Mary, I hope the next two treatments help you turn the corner and make huge leaps in your health. Thanks ao much for the informative, detailed account. It's interesting to read.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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lymewreck36
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Member # 4395
posted
Lupus crash!!!!
Either the plaquenil is not out of my system, and it WAS causing THE lupus....so the "photo" of the bionic 880 is causing a flare. You see, light can cause lupus flare ups. So if the lupus was caused by plaquenil, and I am receiving "light" therapy, and the plaquenil is still in my system, then bionic 880 can cause a flare, even though Dr. W says it shouldn't.
OR
Quitting plaquenil allowed the lupus to ravage me out of control. It has been three weeks off plaquenil tomorrow. Plaquenil is also the first line treatment of lupus. I know...confusing...me too.
Lord help me. Last night was tortuous night sweats and lupus pain....abdominal, lymph nodes from hell, vision blurred out, dizziness I can hardly stand....pain all over, especially low back, just horrible pain...crippling. Lungs are sore when I breath in and out, even my heart feels sore, if that is possible.
I'm just crying today.
I took plaquenil this morning. If the pain gets WORSE, then that was the wrong thing to do, and plaquenil is CAUSING the lupus and the photos of bionic 880 are causing a flare. It takes severl months to get plaquenil completely our of your system.
If the plaquenil makes the lupus flare calm down, then definitely I can't drop it. Must stay on it.
Some people just suffer until they die.
Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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CherylSue
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posted
I'm so sorry to hear your latest travail. God hear your prayer and get relief soon!
Hugs, CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
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posted
seekhelp, there were some stories in the old long Bionic 800 thread about people who wrote that Dr. W is a very good clinician. One person happened to get an acute apppendicitis attack, and Dr. W. has excellent connections to the hospital and she got the appendix removed (and afterwards tested negative for borrelia...).
lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Thanks CherylSue and Northernlights.
I have started to plow through reading that old thread. Getting some good information in there. I read through the appendicitis episode last night! Wow. The body is such an amazing mystery.
Thanks for replying. Everything helps. Sometimes just not being alone helps.
Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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bejoy
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Member # 11129
posted
Mary, I am so sorry about how difficult this is for you right now. I'm sorry about the pain.
Some suggestions for you if you have someone you can consult with about these ideas:
Can you get a glutathione IV to help you detox?
Can you get some drainage homeopathics to help your liver and spleen? The location of abdominal pain and the swollen lymph sounds like your drainage systems are not functioning well.
In the US I use DesBio homeopathic Systemic Drainage. In Switzerland I understand the Heel products are very good, although I am not so familiar.
Are you taking some form of adrenal support? It sounds to me like your adrenals are overtaxed, and your cortisol levels very well might be very low.
There are some very good herbal and nutritional supplements to support adrenals. I have seen some people sucessfully support cortisol levels with homeopathic cortisol as well.
If you have someone who can do energy testing you can have them test your body's response to Plaquenil. It is possible that you might also benefit from a homeopathic preparation of Plaquenil if your body needs to detox from it.
Mary, this is a temporary set back. Your body is working hard to clear the pathogens and toxins. You will get through this.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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posted
Mary, I'm sorry you are having such a rotten time. Please know we understand how bad you feel, even when your family doesn't quite get it. How could they, really? They haven't experienced it. Hang in there! I hope you feel better soon. Please keep us updated.
Posts: 57 | From western Virginia | Registered: Apr 2009
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btmb03
Unregistered
posted
Cottonbrain, I too have asked the very same questions related to people's functioning levels...sightseeing, shopping, eating out, renting bicycles, etc- this controversy was covered in previous threads where (my brain fails me) someone who went to Germany had posted that they were functioning at around 90% prior to the trip.
I think it is good to ask these questions. I don't think anyone is implying anything, just seeking clarification.
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posted
One thing to remember is, when you go for this treatment, you are there for three weeks. Many of us feel a lot better, though not well, by that third week. Also, by the nature of Lyme we have good days and bad. Plus, remember that we are sightseeing with other Lymies, so there are times for breaks.
The walk to eat out in Dobel is not far and is a lot easier than shopping and cooking for yourself.
So, you're hearing about the times we go out an do something over a period of three weeks. If I had felt good the whole trip, I would have done significantly more. For most of us, the vast majority of the trip was merely doing essentials.
I know Joey rented bicycles, but when I saw him his first week there and my last, he didn't look in any shape to be riding a bike .... he was generally seen either sitting or leaning against a wall when he was out of his apartment. We all spent many hours sitting in our jammies in the hall of the guesthouse visiting.
The couple week prior to going, I was mostly bed/couch bound due to having stopped meds a few weeks before.
Scott was highly functioning when he arrived, thankfully, because it was my last week and I got to spend a day with him traveling in France .... a highlight of my trip!
My two traveling partners were in about the same shape as I was (one was probably a little worse). Let's face it, who would bother to go over there if they were essentially healthy? Except for Scott, the rest of us were very typical chronic Lymies. And no one can fault Scott for wanting more than 90% .... I know I wanted more.
One year ago this month I was just starting back on Mepron/Zith/art/plaquenil/cedax and was having a tough time. I was discussing with my dad the financing of the Germany trip. Next month will be the one year anniversary for me of stopping the abx. I can't believe so much has changed in one year. I am not a person who just got a little better.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
I folks. I have to agree, finding it hard to rest things on "faith" the way I do, that this treatment DOES do something for the lyme.
Who would have thought? Not me.
And yes, I am living in hell tonight with pain, but I don't know if it is lupus, left over plaquenil causing drug induced lupus to flare, or if I am having a HUGE detox reaction causing my immune system to get cross wired..as it has been in the past few months.
But I DO know that something has happened to some of my LYME symptoms....numbness for example, and anxiety for example....to make these things get better.
I am really a mess, but in my own mind and body, I know that that little photon machine is doing something......something....I am not sure what. But it is doing something.
I sent a quick email to Dr. W. about my situation. I'll get my husband to phone his office tomorrow to explain that I need to see him at my next photon appointment on Tuesday.
On the subject of being active while being sick....I have to say that I have dragged myself all over Switzerland with pain killers and leaning on my husband's shoulder or arm because I don't want to live here and miss anything. Then I have a good cry and spend the next few days in bed.
IT is so beautiful in Switzerland. It reminds me that I am alive even if I don't feel like it sometimes. So I go.
I can understand visiting a foreign country, sick as a dog, and making myself go out to see it.
But when I am home, I am completely bed ridden, or sofa ridden.
One life....once chance to do it....and it's over.
Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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