posted
I repeat, I do not wish to continue to discuss this in public but I have been given no choice, in order to correct misrepresentations and to defend myself.
I reported on the problems I had out of duty to tell the truth and left it to others come to their own conclusions. I gave the facts. I also explained why I felt that I had not been treated fairly and the disappointment I felt.
Some of the information that has been given at the start of the other thread is incorrect. Dr W has had my e-mail address from the start. I had some questions answered by e-mail before I went. During the time that I was supposed to 'disappear' he made no attempt to contact me by e-mail and the police must not have been informed that he had a way of contacting me at the hotel I was staying in the name of which the doctor knew. Here is the e-mail I sent him
CANCELLED APPOINTMENT Monday, 18 August, 2008 10:41 AM From: "xxxxxxxx" Add sender to Contacts To: [email protected] ( I have protected the doctors identity)
Dear Dr W
I have had to leave xxxxxx it had become too stressful to stay in the hotel since my friend went back to Berlin and I could not manage my diet and having to wait 8 days for the next visit. I am afraid my friend had let me down as I wanted to book into the same place as Gudrun at the begining but he said to wait but by then everything was booked up.
I think the best thing is to find a practitioner here in Berlin who does the photon therapy to continue with your instuctions where I have support and help, so could you send me a medical report by e-mail please that I can give her or him. I will complete the treatment before I fly back to the UK. You can send the results of the blood test to
XXXXXXXXXXX Berlin
but please send it after this weekend.
For the bill, will you send me a detailed breakdown, and the best thing to do I think is for me to give cash to someone and get a cheque from them to send you.
Thank you for your kind care of me
xxxxx
The e-mail was sent to his correct address and on the Monday of the week of my next appointment on the Wednesday 2 days before. I wanted to inform him personally and not have a message passed on by a receptionist as he is not always available on the phone (obviously), and there was the language barrier to consider.
Dr W has said he did not get the e-mail. I wrote the heading in capital letters so it would not be overlooked. I do not understand why he says he did not get it.
But back to what my complaints. I was unhappy that a patient under his care, ie me, aged nearly 60 and extremely sick according to his testings, who had run into serious difficulties during the treatment with accomodation problems due to being deserted by their helper, which was entirely out of her control, and was left with no transport to a supermarket, or means to continue with a very strict diet, and was left having to exist on rice cakes, staying in a high cost (to her) hotel, was not offered any assistance even though the doctor was totally aware of her plight. When I went for my second appointment, I told the doctor of my difficulties and that I had been left alone in a strange city and speaking little German. I don't know what I would have done if I had taken suddenly ill after a the treatment, on my own.
After the second appointment, which I attended on my own, I was informed that my next appointment would be in 8 days time, not the 2-3 days I expected. This delay of my next appointment made the situation much much worse. 8 days in a desperate situation. It got too much. I waited 3 days but had no choice but to leave, and I booked out of the hotel and took a fast train - 6 hours to Berlin where I had somewhere to stay. I was incapable of coping with the stress I was under. I was unable to communicate with the doctor till the Monday, as the train journey was terrible, I was asked to move seat about 4 times and the train to Stuttgart was taken off the line halfway there and I had to haul my suitcase up and down staircases. I was utterly exhausted.
The full realisation that I felt I should have had better treatment did not hit me till I recovered a bit. The pain in my joints was much worse and continues to be so. I knew that I would have to start treatment all over again and pay for an initial consultation with another doctor (which I have not been able to do yet)I also did not have an interpretation of my blood test and asked the doctor for this which has not happened. There was also a question about the bill which I received as requested, and it looked to me as if I had paid twice for two infusions, once to the chemist at the pharmacy. Discussing these issues proved impossible, the doctor did not answer my questions adequately and at my request that he lower the bill, as I had paid for things I felt I had not received like the interpretation for the blood test, and further testing on the ART and continuing care from him, he only said it was my choice to come to him and my choice to leave and that my communications with him should now be in German.
I wanted him to accept some responsibility for what has happened and not charge me the full bill which came to 844 euros.
My opinion that a doctor who accepts international patients, and is making a lot of money from them, could at least have some means of easing communication with them when there are difficulties like mine, by having an interpreter (English is spoken widely but obviously in some circumstances it needs to be at a more fluent level) has nothing to do with what happened to me and what I see as a lack of care. I am afraid I do not see it the way it has been stated at the beginning of this thread that the doctor did everything he could to help me. He has still charged me for things I did not get.
The person who took me to xxxx should not have been trusted, I know. He ended up being totally unreliable and broke every promise he made to me that he would look after me. His wife threw him out a few months ago and I know why now.
It is very sad when Lyme sufferers or recovered people have to rip into other sufferers.
[ 14. October 2008, 05:13 PM: Message edited by: Jenifer ]
Posts: 148 | From europe | Registered: Apr 2008
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
I also commend you for speaking up and sharing your thoughts. BRAVO
For some reason it appears that a person can not disagree with anyone on this board for fear of threads being deleted, and being warned of your "conduct" and being called negative by others.
In the last 2 weeks, I have been called stupid, told to shut up, among other things for merely disagreeing with people.
I dont think I have ever attacked anyone or started a fight here. But I will not keep all of my opinions to myself. Maybe I should just word things differently at times, but this is a discussion board and with discussion comes disagreement.
Just because you disagree with something doesnt make you a troublemaker and it is not a personal attack.
Kudo's to you for having the b***s to stand up.\
Melissa
Posts: 3905 | From USA | Registered: May 2007
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
Mati,
I will just say this - I'm sorry that you had such a rough time, and that your experience was so dissapointing. I hope things get better for you soon.
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Mati,
I don't see anything wrong with your post, past or present. It was your experience and you were reporting it.
What's wrong with that?
First rule of thumb here is that everyone experiences things differently. If I was in your condition and under the circumstances that you were in, I would have desperately acted in a simular fashion.
Duh- I don't even see why you were forced in to defending yourself.
Best, Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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Sorry you had such a stressful experience and that the treatment did not help.
If it was me I would not make any additional payments to the doc until you get a copy of your bloodwork.
Not sure how much luck you will have in negotiating your bill, but whether or not you completed the full course of treatment you should not have to pay for any treatment that was not done.
Hubby had a similar situation with a chiropractor where he ended up in the hospital and was unable to complete the treatments according to our written contract -- we settled up and everything was prorated based on the actual treatments done. I think we lost some discounts but we did not have to pay for cancelled appointments.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Angelica
Unregistered
posted
I am sure you are allowed to comment or question the treatment if you do so it in a polite way.
posted
mati don't sweat it people are allowed to express frustrations here. we are all here because we have been frustratingly treated by a frustrating medical world for a frustrating disease(s) that we have. i appreciate all input on our healing approches. it just shows the world how frustrating getting help can be, and i think that is the point of the controversy behind getting lyme and company treated. we'd not be posting here at all if we didn't have such predicaments in our way. there are posts of disagreements and i personally think they are ok because overall we are a group of friends and groups of friends are allowed to rebuttle without total insult. some posts get deleted i imagine due to the overtones that portray a certain negative attitude towards other posters. perhaps that happens because our minds have been affected by this frustrating illness as well.
feel better
-------------------- do your best to educate the rest because 9 out of 10 doctors don't know jack about tick borne illnesses Posts: 437 | From shawangunk mountains, ny | Registered: May 2008
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I hope that you find the doctor for you. Or that you and the doctor in Germany can work things out if he's what you need.
The fact that we are often so sick that we can barely cope with going to see doctors... it makes me sad.
There really should be a hospital for lymeies, where you can just be rolled in and you can walk out.
Anyway I don't usually post, but I wanted to say I appreciated knowing your experience. Especially because I was interested in the technique you tried.
Posts: 27 | From San Francisco, Ca | Registered: Apr 2007
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posted
Thanks for the support it is greatly appreciated.
Posts: 148 | From europe | Registered: Apr 2008
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
To be quite honest, and maybe this sounds mean, many of us suffer(ed) a lot with lyme and we all know about that. We know about travel. We know about restricted diets and MCS. I still find it offensive Mati would expect the doctor to come to her aid for choosing an unreliable travel companion and not planning ahead about camping or food. Really, that was Mati's responsibility, 100% and to plan for emergencies. You don't just bring one day of food.
Do I have sympathy for Mati? As much as I have for all of us. Sympathy doesn't get me very far with myself or others.
What I am interested in is treatment and whether this approach has any validity. Therefore if Mati feels WORSE and its from treatment (and not from stress of the experience) I'd like to know that.
And if others who are going now all feel better and STAY better for 3-6 months, I will find that interesting.
Posts: 2276 | From united states | Registered: Jun 2004
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MartinJS
Unregistered
posted
Oxygenbabe, you bring up some good points. I don't know about Mati's situation but many docs in this and related fields promise "help" even on their websites to out-of-town, and out-of-the country patients, often making subtle promises that in the end are never kept.
They do often leave the patient "stranded" and watch them as they succumb to the terrible stresses of not being in their familiar surroundings. However, many of us would hopefully only undertake a huge commitment such as that with plans A, B and C in place...and I speak from experience!
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Mati- I'm sorry things were difficult for you.
Going to a foreign country is stressful & I don't think it was the doctor's responsibility to plan your trip out for you, arrange accommodations, diet, etc.
It's unfortunate but this type of alternative healthcare is only for those who can afford it.
There are alot of doctors who I have seen in the past 10+ years who have charged me an arm & a leg who had no clue that I had Lyme. I live in an area which is very endemic for Lyme, too.
I wish I could sue all of them but it's very difficult with this illness.
I did the research on my own & decided to treat myself with the LightWorks. So far, I have greatly improved. I really don't think it's necessary to spend alot of money & to take a stressful trip to treat yourself with infrared light.
The main thing is - is that you have to do the research & be willing to experiment. Seeing any doctor is an experiment. None are guaranteed to cure you - either by antibiotics, supplements or other therapies.
I spent over 10 years going to various "specialists" & all I got was a huge bill.
I appreciate that GiGi posts info here but I don't think that Dr. W is the only game in town in regards to healing with light. You really have to put some time into researching this modality & consider if you can really afford to see Dr. W.
In my case, I could not - but I did find an alternative. I was also mocked for even looking into alternative but I persisted. I have found great relief by using the LightWorks. Whether it's a complete cure, I just don't know, yet.
Doctors are people not gods of healing. Sometimes they can be helpful & sometimes they aren't. If a method of healing works - it will work if I do it myself or if another doctor uses it. To me, it wasn't necessary to travel to Germany.
I can't say it enough - the LightWorks worked for me! It's the infrared light that makes the difference.... it's not the doctor.
If you want to treat yourself with the light you really need to spend the time to research it first. For me it was worth it.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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Thank you for speaking for the "silent minority". It would be truly wonderful if this treatment was actually successful for people. But, having followed these threads these past many months, I am concerned that folks are not getting both sides of the story.
Setting aside whether this "science" is real or not (I am not qualified to say)---I just use common sense when evaluating things like this. The fact that people are considered "cured" of their lyme, yet still have all their lyme symptoms, leads me to believe that something is a little fishy here. (I know, I know that's supposedly because they have other toxins to remove or "chiropractic issues" that strangely are identical to lyme symptoms.)
I would love to be wrong...it would be great to find out that something like this treatment truly helps people more than just a brief placebo effect. I hope the people over there now have real and long term success, but for those considering a trip in the future, I would think long and hard if your time and money is worth investing is such a questionable therapy.
But I sincerely wish all you all the best and hope that you find yourselves in a state of wellness someday.
Jeanne
Posts: 345 | From East Coast | Registered: Apr 2008
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
If the treatment is not completed, of course it cannot be successful and probably symptoms are worse. Did you ever step into a wasps nest? That's exactly what happens.
It takes average five treatments over a period of close to three weeks, with check-ups following. Some doctors who use the Bionic average it at 5 - 8.
Do not blame the doctor. He went as far as contacting the police trying to find the lady because he was concerned when she did not show up after her first two appointments for her next appointments. His office called even me --- halfway around the world, I live on the Pacific Coast, thinking I might have a contact number for her, saying they were concerned because she went missing. Of course I didn't, because I was not involved with her visit there.
That is the kind of doctor you are discussing here.
I have no more to say.
Posts: 9834 | From Washington State | Registered: Oct 2000
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
I don't have a clue about what happened but I am sorry you had to go through this.
I went to one so-called LLMD and after several visits, left literally in tears...
He was a complete disaster.
I don't think it's wrong to let people know what's happening out there. For me, I found out after I went that there were problems. Had I known beforehand, I would have avoided that guy at all costs.
Course people are all different and you should really do your homework before going to any doctor.
Shame we have to go through this crap....
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Angelica
Unregistered
posted
My question is if Dr. W. was practicing here in the USA would what Mati is saying about him be allowed on this board because he is a practicing LLMD even if his protocol is not the normal abx treatment? Who knows what really happened between them because we have not heard the doctor's side of the story.
Would this kind of thing be okay to post here about say Dr. C. who uses a lot of herbal tinctures in his practice?
Staying in a cold campground while getting treatment is never a good idea even if finances are a problem. You were setting yourself up for failure. Maybe the doctor saw this.
If Mati completed treatment I would be more open to hearing about how it made her feel worse but she did not complete treatment and I can not honestly say that that was the doctors fault.
None of it makes sense to me and I really feel some people are very threatened by any treatment that is not the normal abx.
Mati I wish you the best and improved health but I feel like you cannot really comment on the the protocol unless you complete it.
This is not the whole story because we are missing half of it.
Just Julie
Frequent Contributor (1K+ posts)
Member # 1119
posted
I have nothing left to say regarding the personal attacks made about me on this thread.
Perhaps other people in this forum have seen/read what I have regarding the information about this topic.
My only point in posting what I have posted is to raise questions about this treatment.
Which is NOT in the U.S., not by a U.S. LLMD, but in a foreign country.
Not supported by scientific data, not allowed to have opposing discussion made by people who have had the treatment, not allowed to have anything but wonderful, uplifting, exciting, encouraging comments made by people who have nothing to back up their experiences, except POSTS ON THIS FORUM.
[ 13. October 2008, 09:22 AM: Message edited by: Just Julie ]
-------------------- Julie Posts: 1027 | From Northern CA | Registered: May 2001
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posted
again, angry tones only make our symptoms worse and our illness more frustrating. skepticism is good, when the questions are intelligently asked and then intelligently explored. that is how doctors and patients alike learn. that is how most llmds have learned about the bugs. in my opinion, i think there is immense promise in dr w's approach. of course we have not heard a ton about it because it is realtively new, and his methods are not taught at your typical medical school. i have a TON of experience with various medical approaches, from allopathic to "alternative," and i have seen some of the best on the planet for things non-disease related. i tell the stories of some of these practitioners who helped me and many allopathic docs shun it off as "voodoo," and friends I tell of course are in disbelief until i prove the results. i have been heavily been exploring alternative medicine for 4 years now, lyme only entering the scene in teh past 3. germany, and the rest of europe, is known for successful practices considered to be "alternative" here by most docs and of course by most patients because they are undereducated about what is out there. for example, homeopathy works. will insurance or fda or almost all allopathic docs in the usa agree? doubt it. i could go on. the bottom line, in my opinion, is that there are many people who dr w has treated who are cured and feel great. that is ulltimately the same course of study in which our allopathic system tests and judges the successes of all the pills and procedures that they dispense here.
so it's ok to question things, that is how you learn. but to doubt someone's personal input, when they are just explaining their positive experience from first hand accounts, does no good. i agree that mati had a right to post about her experience, but i feel strongly that she cannot blame the doctor for her frustrations outside of the clinic.
-------------------- do your best to educate the rest because 9 out of 10 doctors don't know jack about tick borne illnesses Posts: 437 | From shawangunk mountains, ny | Registered: May 2008
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Hi Mati,
Thanks for posting your experience. Much of the value of lymenet is that we all share our information and experiences, in the hope that it will support and inform others.
I hope that you will ignore the negative nellies who are always critical of people who have experiences that do not conform to their beliefs. I have had that experience too on lymenet, and it is not supportive or enlightening.
Hope you feel better and focus on your recovery.
Posts: 2557 | From home | Registered: Aug 2006
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lymie_in_md
Frequent Contributor (1K+ posts)
Member # 14197
posted
You should very careful with the unsupported scientific treatment. It is what our LLMDs are practicing according to the IDSA.
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
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Just Julie
Frequent Contributor (1K+ posts)
Member # 1119
posted
The Germany treatments (bionic) are not supported with scientific anything that I could find here on lymenet.
I did not do any outside research on it, because I have no intention of spending thousands of $$ going to a foreign country to try out a treatment that cannot be talked about here without allowing opposing sides to make posts/comments! Much less anywhere else.
I don't follow the IDSA, so do not know what you're referencing in your post here.
Long term abx treatment is supported by the medical community for spirochetal disease such as syphilis. The lyme spirochete is in the same bacterial family as syphilis. Tuberculosis is also treated with long term abx (Rifampin).
I speak of unsupported unscientific treatment in regards to the treatment that is being tried out in Germany. Not lyme treatment with abx in the U.S.
I believe that opposing, or negative posts, along with lively, sometimes heated debate, regarding treatments that U.S. LLMD's prescribe are allowed on this board. Just not the actual naming of LLMD's names.
-------------------- Julie Posts: 1027 | From Northern CA | Registered: May 2001
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I'm sorry you had such a bad experience.
There are a number of valid reasons why someone may not get an e-mail when they have recieved them from you before. This exact same situation with another person happed to me as far as past e-mails were going through and then suddenly some of them stopped being delivered.
Off the top of my head, some ISP's have a spam filter and some e-mails are never delilvered because they are tagged as spam. Depends on the subject line sometimes. Another thing that can happen is that some servers are blacklisted. If you are sending an e-mail from a different ISP than your normal ISP (such as from the hotel service), their ISP/server may be flagged as a spamming server and e-mail is not allowed to be delivered.
Did you send it with a return receipt requested? That is the best way to know if someone has actually gotten your e-mail.
I am very sympathetic to your situation but I just want to mention that it is not the responsibility of the doctor to ensure transporation to the grocery store or any other amenities to patients that are traveling to see them unless of course it is specifically offered before hand and a hefty fee is usually required.
Many lyme patients travel to see LLMD's and I've never heard of any of them concerning themselves with travel arragements or providing help once a patient is waiting to be seen.
I agree it would have been nice had the appointment been scheduled sooner but I wonder if there is a reason that it was not. Perhaps you had to wait for a time for the previous treatment to take hold. It's also possible that the doctor had previous plans to be out of town or was booked up or?? It would have been very good if you could have insisted that you were leaving if you couldn't get the next treatment sooner. I know that can be hard to forsee sometimes though.
I don't beleive that your experience says anything about the efficacy of the treatment since you didn't complete the treatment.
Again, I'm very sorry that you had such an unpleasant experience and I appreciate that you shared so that others can beware and have plans in place to hopefully circumvent this type of situation.
BTW - The IDSA does claim that ILADS treatments are not evidence based treatments (they are unscientific) and are unwarranted, ineffective and potentially dangerous.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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lymie_in_md
Frequent Contributor (1K+ posts)
Member # 14197
posted
I'm sorry you don't see the correlation between what is scientifically acceptable and what isn't. Our LLMDs are using ABX long term, it isn't according to the IDSA scientifically acceptable to do that. However these good doctors are healers and see the benefit of using treatments not scientifically acceptable. The are also doing this while putting their careers in jeopardy. They are bucking the system, aren't they?
Is that clear enough. I meant no disrespect, just commenting on what we are fighting for. To get well!!!! If a doctor has a method whether it is long term ABX or bionic 880 shouldn't matter as long as we get well. Don't you agree?
Or how we get well has to be determined by what? by who? by what method?
And who currently determines what is scientific and what isn't? The IDSA, would they determine what is scientific and what isn't? And if they don't who then?
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
There is scientific evidence to support using infrared light for healing.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
Mati,
Am sorry that you had a very disappointing experience.
Hope that you have healed from all the stress and trauma.
Hang in there!!!
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6144 | From Columbus, GA | Registered: Jul 2004
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Mati's experience is not just her opinion, it is her experience and as such is valuable for the rest of us.
She took the time, money and trouble to travel there for treatment so apparently she was hopeful for success.
Her story should be allowed to stand on its own merit and without others shooting her down for it.
When you don't allow ALL people to report their experience in their own words based upon their perspective, then we don't get a true analysis of the situation.
Her negative experience will be weighed out by all the positive, successful experiences if this procedure is indeed successful in curing lyme.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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Just Julie
Frequent Contributor (1K+ posts)
Member # 1119
posted
VERY WELL SAID, Luvs2Ride! Brava!!! And, I completely, and utterly agree with your opinion of this situation!
-------------------- Julie Posts: 1027 | From Northern CA | Registered: May 2001
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lymie_in_md
Frequent Contributor (1K+ posts)
Member # 14197
posted
I also agree with luvs2ride view, well said luvs.
Mati's situation was unfortunate and we learned from her experience that we have to be very careful in how we make arrangements to see doctors.
As far as Dr. W. in germany, I'm sure we'll have a continuing track record of success pretty soon. So far:
Nanadubo -- success GiGi's husband -- success Clancy's husband continues to make outstanding progress Annsha's two children -- success Nanadubo mentioned someone else from this board hesitant to post -- success
Mati -- not successfull
hopingandpraying -- not sure
4 more on the way to treatment
We'll just keep tracking this and see where it ends up.
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Bob--Clancy's husband outstanding success???? You are in contact with her? As last posting on this thread he was lyme-free by Dr. W with all his lyme symptoms intact.
Gigi's husband--what is his symptom improvement? That's all I really want to know. I can't make head or tails of what a practitioner "says" without clinically proven testing (ie antibody or PCR testing).
Not to say I am not interested--just, NanaDubo's experience convinces me she is greatly improved for whatever reasons, and Annsha's kids (sp)?
Love to hear more about Clancy's husband. Thanks.
Posts: 2276 | From united states | Registered: Jun 2004
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
Bob, a slight correction, to the best of my knowledge:
Mati - treatment incomplete ( patient did not return for scheduled appointment to complete total protocol of min. 5, sometimes more)
Hopeandpraying - cleared Lyme infection - other causes for remaining symptoms which need to be addressed
Take care.
P.S. Mati was only billed for the services she received. The doctor's charges in general are less for foreign patients than for other private patients.
Posts: 9834 | From Washington State | Registered: Oct 2000
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lymie_in_md
Frequent Contributor (1K+ posts)
Member # 14197
posted
O2, I have heard that Clancy's husband had two parts to his treatment. One see Dr. W. to get rid of lyme, second see an osteopath for the second part. His symptoms are the most prominent with the second part. I heard he is doing much better with second part.
Quote from Annsha :
quote:My two "young adult" children are saying that they are well after 4 weeks of Dr. W's comprehensive photon treatment that included detox, ozone therapy, chiropractic adjustments and coaching. The first 2 weeks in August were very difficult since they revisited all their symptoms, less severe and shorter though. After 2 weeks they started to feel better.
Seems successful to me.
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
| IP: Logged |
posted
Mati's experience needs to be respected. It was very difficult for her in Germany and it is very understandable to feel sad and frustrated after her ordeal. I feel the need to stand up for Dr. W's reputation, based not only on my family's experience but 5 other Lyme patients who are not connected to Lymenet.
I am reposting parts of what I wrote on my other link: Successful treatment with Bionic and Dr. W. This describes our experience.
Dr. W is a very caring, highly trained and, lucky for us, intuitive doctor. His office staff is very competent and creates a positive, supportive atmosphere. We were actually looking forward to seeing them!
I remember very clearly a time in the middle of August when Dr. W and his staff were trying to find a patient who had not shown up for treatment twice. They were very concerned about her well being, contacted the police, followed up on any lead they had. They even called an American patient to find out if she knew the missing patient. I was very impressed with the effort, diligence and concern that everybody in the office showed. It seems like this person was Mati. I am sorry she had such a difficult time. Dr. W went way beyond what could be expected in his attempts to connect with her and help her. The office was very busy at the time. The Dr. used precious time and energy to help her. It's sad to see that Dr. W got no recognition or acknowledgement for his care.
Getting treatment in a foreign country is stressful. When you are well enough to be a "tourist" it can be a great adventure. If you can't be a tourist, you need a support person who is able to feed you, take you to the doctor and entertain you.
Several friends and family members have received or are currently receiving photon treatment in Dr. W's office. Each single one reports improvement and is happy that they found this treatment. We met several patients in the waiting room at Dr. W's who were very ill. They all have a long story to tell about their illness. I asked the question why they did not publish their experience on line. Well, it's not what they feel comfortable with. This is a private matter. They were happy to talk in person, but not on the internet. I think there are cultural and generational differences at work here.
I wish we would focus more on what the photon treatment can do or not do for Lyme patients.
Posts: 6 | From US | Registered: Mar 2008
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lymie_in_md
Frequent Contributor (1K+ posts)
Member # 14197
posted
I would also say, poor Dr. W. He had a patient who he determined to do treatment on, who ran away. I feel bad for him as well. I'm guessing there are no demons here, just a large amount of miscommunication. And maybe we are creating more here and now.
I believe Dr. W. is a wonderful doctor and like all our LLMDs needs our support and admiration to encourage him to heal.
It takes courage to be an LLMD either here or in Germany. There is large orthodoxy to prevent them from healing people. The orthodoxy determines what is scientifically acceptable not the doctors. That is why the LLMDs need our help and not our internal bickering.
What is important our bickering or getting people well? Is it better to beat up our LLMDs here or to find ways to support them? What is the objective? Why can't we start mending fences and start getting along!
If you choose long term ABX to battle this disease I support you. If you choose the bionic 880 to battle this disease I again support you. We now have choices, lets consider what is best for our own situations and be a little more supportive of each other.
Just Julie -- I have no issue with you, I just disagree with what you termed scientifically accepted. I believe the bionic 880 is going to show itself to be a method to help people rid themselves of lyme. Some will lose their symptoms some will have ancilary symptoms. We will certainly know more in 3 to 4 weeks with 4 more reports.
All the best to all of us and may we all get well.
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
I think it is really wrong that Mati is not allowed to tell his/her experience.
I know everyone is excited about the Bionic 880, but with every treatment there is positives and negatives.
name me one that doesn't.
so as more and more people try this potential treatment be prepared for both positive and negative reports.
melissa
Posts: 3905 | From USA | Registered: May 2007
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
I think, I think, it's Full Moon. The bugs are copulating and the world is going bunkers!!!! This is the time of month when my doctor used to say his phone rings off the hook!
Cool it, girls and boys. We have a fantastic treatment that works every time, if done right and for the right reasons. If it is not Lyme Disease, you cannot treat it with a Lyme protocol. Just face it - the reality is that Lyme never comes without attachments. If you can't manage to get it yet or don't want the treatment and would rather go the abx or other ways, let the people who dare, enjoy their hard-won success.
I am sending all of you blessings. Next time I find something new to cure Lyme, can you guess whom I am going to tell about it?????
Take care.
[ 14. October 2008, 01:30 AM: Message edited by: GiGi ]
Posts: 9834 | From Washington State | Registered: Oct 2000
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Just Julie
Frequent Contributor (1K+ posts)
Member # 1119
posted
Wow. I'm. Just. Speechless.
[ 13. October 2008, 09:15 PM: Message edited by: Just Julie ]
-------------------- Julie Posts: 1027 | From Northern CA | Registered: May 2001
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Angelica
Unregistered
posted
There is a full moon tomorrow at 1:02 p Pacific in Aries (fire) and Mercury is retrograde.
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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Just Julie
Frequent Contributor (1K+ posts)
Member # 1119
posted
quote:Originally posted by lymielauren28: I'm very interested in the Bionic treatments - VERY.
What I am not interested in is the one-sided, almost militant attitude of some regarding this treatment.
A treatment is a treatment period. You can't spin it, manipulate it or twist it into something it is or isn't...of course you can try.
Mati deserves to tell her truth - period - and the ones trying to disprove and discredit her truth should be ashamed.
The right thing to do is to let everyone's truth be told and then others can sift through it and take what they want and leave the rest.
Lauren
Why can't I write like this? I applaud your way with words Lauren. And agree. Mati should be allowed ONE thread with her experience on it, without any muddying of the waters.
quote:Originally posted by GiGi: I am sending all of you my blessings. Next time I find something new to cure Lyme, can you guess whom I am going to tell about it?????
posted
Hummm . . . Now I understand why my hope to go to Germany for treatment may have possibly turned into a dream. Gigi has been so kind and helpful to me. I sincerely appreciate her and all that she has done.
I expect that 'Six' and the others are receiving their excellent planned care starting this week. Hope it goes well.
Is there anyone in the USA or Canada who uses the Bionic 880 and similar protocol?
Posts: 212 | From Arizona | Registered: Jul 2008
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posted
I am sorry that posting my experience has caused so much argument. I am grateful for the kind words of some. The criticism I could do without, you don't know the whole situation and I have been misunderstood. I did not expect the doctor to help me with diet or ridiculously, with transport to a supermarket or to organise my accomodation for me. I originally intended to stay at the place that has been recommended on here and if I had stayed there, no doubt my course would have been completed. Unfortunately I got mixed up with someone whom I know now, I should not have trusted. I take it the critics have never done this before in their lives, thanks very much. The person said that he thought that this accomodation was too far out of the way and as he is German and presumably knows his country, I listened to him and wrongly presumed that he knew of something better. I am already coping with my illness totally alone in life, and suffer greatly from brain fog, and someone coming along offering help was quite irresistible as he seemed to know what he was talking about. Well he did not know and I do know more than ever now that things are very often not what they seem so in that way I have benefited from the whole mess.
Staying at a campsite was not such a crazy idea. I have stayed in tents before and have had a good improvement in my condition due to my electrical and chemical sensitivity being eased sleeping outdoors. It is usually hot in a German summer, cold in winter, and if the weather had been the usual it would have been very good indeed as the campsite was quiet and I could have spent a lot of time resting on my bed in the van. The cold and rain were very unusual and I could not have foreseen them nor my helpers inability to occupy himself or tolerate the rain. It was fine for me it was the unexpected extreme cold at night I could not tolerate as my helper did not bring along the camping equipment he should have.
I found the doctor and his helpers to be as helpful and kind during the appointments as you would expect in a private clinic. I do appreciate that the doctor made an effort to find me and was concerned about where I was, even though he did not e-mail me at all which I cannot understand in the least. But maybe he did not understand that there would be internet access at the hotel. Germans in general seem to be less internet savvy as we are.
I am not commenting on the use of photon therapy as I did not finish the course and am unable to say exactly why I am worse. It may very well cure Lyme. I hope it does. I am not however satisfied with the doctor's care regardless of him attempting to find out what happened to me, taking it that his computer rejected the e-mail from me.
I was not impressed by ART. I expected it to at least tell me some things I did not know about my condition. The doctor did say that I have a clamydia (not sexually transmitted) problem that is worse than the borreliosis. But nothing came up about my multiple chemical sensitivities which are extensive and severe, my many food allergies, and most importantly, my mercury problem.
I was poisoned with mercury at 6 months with teething powders which were later taken off the market after 25% of babies who developed 'Pink's Disease'. I was in hospital seriously ill and nearly died. it left me with much damage, to the immune system and endocrine system. An endo told me that I have been hypothyroid since then according to symptoms. Then at 7 or 8 my father brought home as vat of mercury from work and gave it to me. I played with it till it was all gone, rolling it around and poking it.
At 40 I had a serious exposure to pesticide and I have still amalgams in place. It is impossible that i am not full of mercury but the doctor did not mention it nor advise me to get the amalgams out before using the BIONIC.
I have little by way of written medical reports on these problems and due to the language difficulty I could not go into detail. I thought that the doctor would find it out with the ART testing, such faith I had in it. I was not really impressed by it besides the testing only took a few minutes whereas I expected it to be much more time consuming and thorough. The doctor, apart from this one thing, did not tell me anything I did not know, advise me on anything or even seem to have much knowledge on mercury poisoning or treatment for it long term in detoxification.
He did pick up that one leg was shorter than the other and correct this with a chiropractic session. I think he is very skilled in this.
I have mentioned my disappointments with him - that when he heard that I was experiencing serious difficulties, he did nothing to help, either in making a suggestion or otherwise, just even as another human being who is faced with someone whatever the reason, is in a bit of a fix and a major one considering their health state. If this is the usual behaviour in America ie that you sort your own problems out then I am very sorry for those who live there, it seems that we British have more compassion than this.
My other complaint is that he has not responded to my request for him to negotiate on the bill for the lack of supply for things I have paid for ie
a) interpretation of the blood test for borreliosis
b) question over me paying twice for infusions
I left because there was nobody to help me, I had said I was in trouble but was offered no advice. On top of this I feel that he is not the least interested in any aftercare. He has not suggested what I can do from here nor advises me on whom I could see in Berlin.
I think that he has taken on more than he can cope with and with his looming holiday while I was there, which is the reason why he changed my 3rd appointment so that i had to wait 8 days I am sure so that he could fit someone else in with the initial consultation, meant that he did not give me enough attention. A doctor who takes on too much like this is greedy in my eyes.
I am not one of these people who hold doctors up to be God's. I believe in telling others if there have been problems with a doctor so others can be warned and make their own minds up. Searching for me by making a couple of telephone calls does not cancel the rest out in my eyes. Of course he would be at least mildly curious of my whereabouts and hopefully perhaps feel a little guilty about my situation maybe, though not enough to reduce the bill.
My crime has been to criticise a doctor which has triggered a counterattack from some. Well at least some are pleased I spoke out.
Posts: 148 | From europe | Registered: Apr 2008
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lymie_in_md
Frequent Contributor (1K+ posts)
Member # 14197
posted
Mati, hopefully you can find another doctor, maybe purchase the device and find a practioner to help you with it. The doctor mentioned chladmidia, maybe that is a problem you can work on. As soon as the chladmidia is dealt with, maybe mercury will show up and that will have to be dealt with in combination with all the internal fungus so associated with mercury. Then make sure of kidney and liver drainage during the detoxification. Repairing the gut and so on.
By the way Mati, why do you think the Dr. is greedy? What makes him so in your opinion? Is it just because of the billing issue? Or are his rates too high, or you didn't get enough attention in your estimation for the money spent? How does he compare with other doctors you've seen as far as billing?
If anyone does decide to go to germany, please do not choose to use a campsite. Sage advice might be to stay at the Inn. There should be enough folks to have gone to help with arrangements and with any questions.
Again, I'm sorry this happened to you. I'm sure you'll find another practioner soon!
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
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posted
I did not say that Dr W is greedy, I said any doctor who takes too much on for him to give a good service is. I would prefer not to say that but I was unhappy about the things I mentioned previously regarding the billing and felt that my appointment was re-scheduled due to the doctors impending holiday. I did not feel that my condition was really gone into carefully enough, it felt a bit rushed. The Dr wanted me to find the web-site of a doctor who had diagnosed Lyme for me through darkfield microscopy but I could not and that took some time up. I did not have a lot of medical reports to show him. I do not have them and I did not feel that it was so important as it would be with a conventional doctor as I understood that through energy testing he would have all of the information he needed but as I said, I was very disappointed in what he was able to tell me about my condition. I would have expected him to know much more about it. he even asked me whether chemical sensitivity is a greater problem for me than the Lyme which of course I could not answer. Looking back I did not find him knowledgeable outside of Lyme and muscular skeleton problems.
I do feel shortchanged yes definitely apart from not completing treatment.
Posts: 148 | From europe | Registered: Apr 2008
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
Dr.W. does not practice ART. He uses other methods of testing, Biocom 2000, I believe is the device, an instrument similar to EAV. I am not familiar with. But I do practice ART myself and know that Dr. W. does not use it. I don't believe he is trained in it - it takes a long time before people become proficient. He uses the Biotensor for quick testing. The tests for Borreliosis, etc. is done on the Biocom, as is the testing for allergies, etc. The Biocom is also displayed in Dr. W. power point presentation to the medical community. That is where I first saw it.
Dr. W. has more than one e-mail address. Before I knew better, I sent a message to one of them and never got an answer either. He told me it's one he never looks at because it's private, not for the office, and he never has time to pay attention to that one. There are many occasions where I either had to wait long or never got an answer, whether from Dr. K. or Dr. W. They are in the healing business and somewhere, when the workday is done, the patients have to take the backseat, at least for a few hours. Doctors have to have a life just as we do. If they don't, they are becoming ill themselves.
Unless a doctor practices some sort of self-preservations, Lymies have a habit to take over. I know it, because I lived it, because I was in a very similar frantic situation many times --------now so long ago, I can hardly remember. Dr. K. got hundreds of e-mails by the time he looked back at the computer after a few days. That is why they have an office staff. Dr. W. had three assistants in the office when we were there --- those are the ones to contact as a rule. The doctor spends his time with patients every minute he is there --- not to answer e-mails from his many patients.
Maybe if we start thinking less of ourselves and more of others, things will work better for us.
Take care.
Posts: 9834 | From Washington State | Registered: Oct 2000
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MartinJS
Unregistered
posted
Mati, while there may have been factors not in your control don't feel guilty about talking about your experiences.
I have gone to several "experts" (not LLMD's) whom patients "swore by" and I had terrible experiences despite spending time, money and energy to travel to see them. I'm surprised some of them are still practicing, some of them in my book were true "charlatans". (I realize you don't consider Dr. W that).
But for every negative experience there were equal number of patients who loved them and would have not given them up for anything. If you feel disappointed by what you went thru then that's your perrogative. Sorry you had to go thru such a terrible ordeal, perhaps it's time to move on to different docs or different treatment! Good luck to you!
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lymie_in_md
Frequent Contributor (1K+ posts)
Member # 14197
posted
Mati this is a quote from you on a prior post.
quote:A doctor who takes on too much like this is greedy in my eyes.
It really doesn't matter, you have a billing issue with Dr. W. No one can help you with that here. It is also unfortunate you didn't feel you got the attention you expected.
That said : this is hopefully a bump in the road to your getting well.
Hopefully some of the folks can offer something constructive to help get you well. Lets see if they can give you some constructive advice as well.
As far my part, I suggest you get a biotensor for your own personal use. I think it is a marvelous device. I would get the one GiGi recommends, before you purchase you might get the advice of others and don't just take my word for it. I'm going to hopefully pass my on to one of my sons and also get the one from germany in time.
All in all you need to find a practioner who can help you assess and detox mercury. This one thing has to be done with great care. It is obvious based on your exposure to be one of the problems.
I'm also curious how you came upon the idea Dr. W. was using ART? ART is done usually with two people the practioner and surrogate. And Dr. W. doesn't use nor know how to use ART.
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
micul - You are wrong. There is scientific evidence that infrared light works on various conditions from curing blindness to healing wounds & brain tumors... just do a search on Google.
I have posted info here, repeatedly. I'm not going to post anything else. Just search this site or the internet. Scientific studies on infrared light in healing have been sponsored by NASA, DARPA, & other valid researchers. If that's not good enough proof, I don't know what is.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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lymie_in_md
Frequent Contributor (1K+ posts)
Member # 14197
posted
Lymielaurin I appologize to you, i guess it is possible I took the word militant as being inflamatory and maybe the inuendo of the guilty know who they are. I may have been on that list hard to say. Maybe I did take it too far.
IMO we should concentrate on helping each other get well. Share what we know, try and fail, pick each other up when someone falls down. I hope that is the direction we all take.
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
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Angelica
Unregistered
posted
Not to hijack your thread Mati because I think we can all agree it has been hijacked a million times over already but maybe just to change the tone of the board we can all do something positive today together.
Mati I truly hope you find a MD or healthcare provider you do feel really good about soon that you enjoy working with and that you do get well soon! I think everyone on this board would like you to get better.
I also think communicating on a board or forum can be difficult at times. I have the feeling that if all the posters on this thread were at a party together in a beautiful setting with good healthy delicious food and nice weather that we could all get along peacefully at least for the first 30 minutes.
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posted
A private doctor offers a service, just like any other business, and as such, is open to evaluation and if anyone has complaints about the service or product, it is ridiculous to say that nothing negative should be said, especially in a group of people who are considering spending their time and money on this service, unless the person/company is present to answer.
I only reported what happened, purely from the desire for others to be aware of exactly what was going on in Germany, so they could make a decision based on the full facts. I did not have the intention of blackening the doctors name and have given him praise where it was due, and I did say that I could not evaluate the BIONIC but I was driven to respond in order to defend myself, and carry this conversation on so much because of the heavy criticism from one person, saying that anything that went wrong was my own fault, and negating my evaluation that I had not received value for money and felt shortchanged. In short, denying me the right to report on my experience and have an opinion.
I did not know that it was not an ART I was tested with. I honestly believed it was and was one of the reasons I was so keen to see that doctor. I was wrong. I may not have done my research thoroughly enough, I was just so desperate to have the treatment advertised here and was worried about going over in the cold weather. My health has had such a downswing this last year and I have been practically at the stage of needing a wheelchair that I became desperate as I am alone and have no help. It seemed like my last chance especially due to my chemical sensitivity and the looming possibility of having to go the way of other sufferers who, when getting to the age of heart attacks and strokes or taken into the Accident and Emergency room, and refusing medications due to the inability to take anything chemical, are in danger of being sectioned and forced into treatment, due to the efforts of a British psychiatrist who has great influence here and has succeeded in turning the medical profession away from accepting this condition as physical. Living with this fear is not easy and it is not helping matters by being thrust into the whistle-blower role.
Posts: 148 | From europe | Registered: Apr 2008
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Just Julie
Frequent Contributor (1K+ posts)
Member # 1119
posted
.!
-------------------- Julie Posts: 1027 | From Northern CA | Registered: May 2001
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posted
To those that are interested: This thread was gutted by the moderator Jenifer. This is your proof Bob, and others that continually deny that this happens on a regular basis when actual facts, or history on the Bionic 880 fiasco is put in print on a thread that discredits it and it's originator here at Lymnenet.
-------------------- You're only a failure when you stop trying. Posts: 945 | From U.S | Registered: Oct 2004
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MartinJS
Unregistered
posted
Micul, could you pls elaborate on "this thread was gutted by Jenifer" for us folks with terrible brain fog? Thanks.
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Just Julie
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Member # 1119
posted
Gutted means that the moderator went into each "questionable" post, edited the portions that were seen to be offensive, left what wasn't intact, and totally removed posts that were inflammatory. Except for one persons. Why, only the mods know.
-------------------- Julie Posts: 1027 | From Northern CA | Registered: May 2001
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posted
I gutted out the parts where members were attacking EACH OTHER. I am allowing this topic to remain on the boards because members have a right to express his/her experiences.
For those that say I remove negative posts, this is one gigantic negative topic. mati had a bad experience and is trying to discuss it with others to get some support and insight.
If the statement you make about me removing negative posts were true, this would no longer be here.
With that note, please stop bashing each other and help mati, and others, learn from this experience.
Mati is not bashing the doctor, but is trying to get support for the painful situation that has just happened.
-------------------- Jenifer Stolow LymeNet.Org Webmaster Posts: 318 | From Upstate New York, USA | Registered: Feb 2001
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Mati - I'm sorry you are having a hard time. It's hard for all of us. I hope you will be able to find something that will work for you.
I'm glad you expressed your side of what happened when you went to Germany. It's not easy to go to a foreign country where you don't speak the language - just for a vacation - never mind medical treatment...
I hope people will feel that they have the right to post their side of an issue. It makes it more fair & balanced.
No treatment is 100% for everyone. We are all different. It helps to read all sides of each issue so we can decide for ourselves what we would like to do.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
Jenifer, thank you for the time you take to keep the personal attacking under control, that kind of thing is of no benefit to anyone and I'm sorry to see others questioning your motives.
Mati, I'm so sorry you had such a rough trip but your experience will help others watch out for the pitfalls you encountered. I hope you can find some affordable treatment close to home. Please don't stop trying.
Take care, Looking
Posts: 590 | From Canada | Registered: Oct 2007
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Thank you for posting your experience. I'm dealing with this alone also, and I don't speak German, so I know I'd have a hard time getting around by myself over there. Being alone in a foreign country w/Lyme disease can be a little scary.
I was alone in Italy for a few days earlier this year, and I got really frightened when I "got lost" a couple of times.
Patti
Posts: 975 | From California | Registered: Apr 2007
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posted
Mati, I am also sorry to hear that your trip to Germany did not work out the way you had hoped. I am considering making the journey myself and it is good to hear all sides.
It seems to me that your main issues were with Dr. W. and your traveling companion rather than with the Bionic 880 treatment itself.
I hope that perhaps you will be able to find another practitioner in order to complete the treatment. Maybe you could try contacting the UK distributor in Nottingham http://www.tradeandinnovationltd.co.uk/index.html and see if a MD or ND closer to your home has one?
posted
Mati, there is a Dr. P. in Oxford UK who is using the Bionic 880 to treat Borreliosis. I am thinking about going to see him. I can PM you when I get more info, if you wish.
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