gwb
Frequent Contributor (1K+ posts)
Member # 7273
posted
Well, after doing some research and talking with lyme folks on various forums, including this one, I've decide to go to see Dr. J in KS.
He has a clinic which I would be glad to post here but not sure it's allowed as it would give his name, address, etc. If I can post the clinic's website link here let me know and I'll be glad to do it. If not, pm me and I will reply to you with the link.
I plan to go for two weeks, but depending on funds (or lack of them) I may go for a shorter time. I'm trying to raise some money from family, friends and church to pay for the full two weeks.
This is a holistic approach to treating lyme. Dr J has been trained in Germany and another country (can't remember where) and mixes some of the Germany protocols along with a bit of Dr K's protocol and other things that I'm not too familiar with.
To be honest, some of the things he'll be doing sound a bit hocus pocus for my taste, but no more so than ART, AI and other alternative treatments that so many people swear by.
I'm at rock bottom right now and feel like this is pretty much my last chance to get on the road to recovery. Many people have emailed me or pm's me and have spoken very favorably about this protocol. No, not all of them are fully recovered, but most of them are much better and continue to get better.
One gal told me she bought his book and did it on her own for 8 months and got "totally well". Others told me that they are 70-90% better now and continue to do their treatments at home.
ott70 speaks in great detail about this clinic on this thread http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/89669 He's written about four or five posts on this. He suggested I start a thread sharing my experience while in treatment there.
I thought I would start this thread now and hopefully I will be able to give a day to day report or at least keep you updated two or three times during the week if I am feeling well enough to do it.
We leave this Sunday (weather permitting, and health permitting). If you are a praying person, I covet your prayers for us at this time. If you're not a praying person then wish me luck. : )
My wife is going with me which means she'll lose two weeks of wages. The clinic treatment for the full two weeks could end up costing us around 8 thousand dollars or more. Not to mention we will have hotel, travel and food expenses while there too.
Pray we will find some way to raise the money in the next few days so that I can complete the full treatment program while there. Pray too that this protocol will put me on the road to recovery.
Please understand, I'm not promoting this place I'm only telling you what I'm going to be doing and offering to share my experiences on how I'm doing while I'm there. I will try to give daily updates if at all possible. If not daily, then at least every other day.
If you have any questions or want to start a discussion about this on this thread feel free to do so.
Thanks for all your support and prayers. You are a valuable and important part of my life and I'm glad to be a part of this lyme community (family).
I think this is the right decision for you, and I'm sure you will find some improvement with this new clinic.
You will certainly be in my prayers.
Please keep us all updated as we will be thinking about you!
Hugs, txgirl
Posts: 490 | From TX- Go Cowboys! | Registered: Aug 2009
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feelfit
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posted
Good luck Gary! there is a woman here in MI. who does electro-dermal testing and works closely with Dr. Jerrigan (don't think his name is taboo as he has published books)....
She has very good success with her lyme patients and with patients with other chronic illness as well.
I hope that your experience pays off in returned health.
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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i went to the hansa center last April. Dindt seem to help me at all. BUT he did say the bacteria was morphing in my root canals and they need to be pulled.
When i had a biological dentist pull the 2 root canals she confirmed they where full of bacteria.
So its for me to give true feed back. Wish he told me on the 1st day so i didnt have to spend 10 grand... Then go home and spend another 12 grand with the dentist Very expensive month...LOL
posted
Gary, You will be in my prayers. I'm new here so don't know your story but can see you've been here for a long time.
What works for some doesn't work for other. These danged complex earthly bodies. But I like you like being on this earth right now & want to hang around for a while
I'll be watching with interest for your reports.
Posts: 75 | From Missouri | Registered: Apr 2009
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gwb
Frequent Contributor (1K+ posts)
Member # 7273
posted
quote:Originally posted by txgirl09: Gary,
I think this is the right decision for you, and I'm sure you will find some improvement with this new clinic.
You will certainly be in my prayers.
Please keep us all updated as we will be thinking about you!
Hugs, txgirl
txgirl, thank you for your encouragement and your prayers. That means a lot to me!
gwb
Frequent Contributor (1K+ posts)
Member # 7273
posted
quote:Originally posted by feelfit: Good luck Gary! there is a woman here in MI. who does electro-dermal testing and works closely with Dr. Jerrigan (don't think his name is taboo as he has published books)....
She has very good success with her lyme patients and with patients with other chronic illness as well.
I hope that your experience pays off in returned health.
Feelfit
feelfit, thanks for wishing me luck! That's encouraging to know about the electro-dermal testing and success she's having with lyme patients and others with chronic illnesses.
gwb
Frequent Contributor (1K+ posts)
Member # 7273
posted
quote:Originally posted by steelbone: gary
i went to the hansa center last April. Dindt seem to help me at all. BUT he did say the bacteria was morphing in my root canals and they need to be pulled.
When i had a biological dentist pull the 2 root canals she confirmed they where full of bacteria.
So its for me to give true feed back. Wish he told me on the 1st day so i didnt have to spend 10 grand... Then go home and spend another 12 grand with the dentist Very expensive month...LOL
Best of luck Gary- ST-8 machine is pretty awesome
steelbone, sorry you didn't have good results with the protocol. That's disappointing. Too bad you had to pay all that money to find out about the bacteria in your root canals. Glad you were able to get it taken care of.
Are you doing any better now and if so what kind of protocol are you on or were you on?
The harder you work the luckier you get! Posts: 965 | From Nebraska Cornhuskers fan in Massachusetts | Registered: Dec 2007
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gwb
Frequent Contributor (1K+ posts)
Member # 7273
posted
quote:Originally posted by lilacs48: Gary, You will be in my prayers. I'm new here so don't know your story but can see you've been here for a long time.
What works for some doesn't work for other. These danged complex earthly bodies. But I like you like being on this earth right now & want to hang around for a while
I'll be watching with interest for your reports.
lilacs, thank for you prayers. I've had this disease since about 1995 and was dx about five years ago. Been off and on abx since that time and haven't fared very well with them.
That's mostly because my stomach is sensitive and cannot tolerate abx well. I'm hoping and praying this holistic approach will get me on the road to recovery.
Thank you for your kind words. I'd like to be around for a little bit longer too so I can enjoy being around our precious grandkids.
Since they've been born they've known me as the "sick Papa with the bugs", hopefully someday soon they'll know me as the Papa without the bugs. : )
Again, thanks for your prayers and kind words. I hope and pray you continue to get better too!
daisyrlb
Frequent Contributor (1K+ posts)
Member # 15686
posted
I'm so glad Gary posted this thread.
Finally, I'm "coming out of the closet" daisyrlb (me) I'm Gary's wife. He so much needs your prayers.
Life is so crazy and yet somehow "all things really do work together for good" (Romans 8:28).
To make a long story short I got Lyme Disease through a tick bite, ended up getting treated, and got better. Gary and I realized he had the same symptoms as me. He was tested for Lyme and sure enough positive (acquired through a blood transfusion years ago).
As you all know he has not improved. This year has been a drastic turn for the worse. Among many things--Gary has lost 70 pounds and continues to lose weekly.
We'll keep you posted from The Clinic.
Prayers coveted, as well as, positive vibes our way.
Thanks all.
Rhonda
Posts: 2188 | From Oklahoma | Registered: May 2008
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springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
Good Luck Gary...
You have to follow what path feels right to you. I would love to hear that your doing great soon!!
I think that integrative and holistic approaches can really be key when you have a good doctor who can manage it for you too..
Sounds like you choose a good place and doctor.
Will be thinking of you.
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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gwb
Frequent Contributor (1K+ posts)
Member # 7273
posted
springshowers, thanks for your encouraging words of support. I hope and pray this is the road of recovery for me.
I will try to post as often as I can from the hotel next to the clinic. If I'm feeling up to it I will post something on a daily basis, if not then my wife will if possible.
posted
Daisy! I did not know you were Gary's husband! What sweet people the two of you are!
Be careful driving, and we will be thinking about both of you.
Posts: 490 | From TX- Go Cowboys! | Registered: Aug 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Good Luck to both of you. Hope you get great results.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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gwb
Frequent Contributor (1K+ posts)
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posted
Thanks Pinelady for wishing us luck. Hope I get good results too. Will keep everyone posted.
posted
Gary, Gosh, If I was in my own home I would let you guys stay with us since we live 35 minutes from the Hansa Center. But our rental house isn't ready yet, so we are with in-laws. I wish you luck with Dr. J. They just got a new office and it is quite nice. He is very sweet man who has a passion for helping lyme patients. He has a infrared sauna and the ST8 machine is (like Paul said) awesome. I chose to try meds after his protocol but I do believe he knows a lot about Lyme. The staff is very warm and sweet. You will be in good hands. Yes - some of it is hokey pokey, but he knows his herbs. Just put all your trust in him and do the full protocol. Good luck, brandi PS. Dr. J doesn't mind the publicity, he has written many books.
quote:Originally posted by Brandimc: Yes - some of it is hokey pokey, but he knows his herbs. Just put all your trust in him and do the full protocol.
Gary,
To add to Brandi's comments, "yes" some of it does feel hokey-pokey. But does he ever know his herbs. If you are going to get any type of natural or homeopathic help, and are willing to get that help, then he has to be one of the best to see.
I was in the same frame of mind as you are. I'm engineer by occupation, so I don't have time for hocus pocus. And I'm still not overly convinced that some of the treatments helped me much. But just meeting with him and getting a natural solution to follow and actually feeling better after two weeks was all worth it for me.
If you do not like some of the treatments and feel they are not doing anything for you, then you can definitely request not to do them. Still, it's best to try and follow the protocol they set for you as much as possible.
Gary, safe travels to you and your wife and thanks for starting this thread to keep us informed of your visit.
God Bless, Derek
Posts: 194 | From Colorado | Registered: Nov 2008
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Wish you all the luck in the world. Alternative care has been a Godsend for me. It will treat the entire body and not just the bugs...the body systems all get messed up with this disease
Praying daily
Renee
Posts: 130 | From Central NY | Registered: Jul 2009
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Good luck! I really hope this treatment works for you. I will be looking for your updates.
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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gwb
Frequent Contributor (1K+ posts)
Member # 7273
posted
quote:Originally posted by Brandimc: Gary, Gosh, If I was in my own home I would let you guys stay with us since we live 35 minutes from the Hansa Center. But our rental house isn't ready yet, so we are with in-laws. I wish you luck with Dr. J. They just got a new office and it is quite nice. He is very sweet man who has a passion for helping lyme patients. He has a infrared sauna and the ST8 machine is (like Paul said) awesome. I chose to try meds after his protocol but I do believe he knows a lot about Lyme. The staff is very warm and sweet. You will be in good hands. Yes - some of it is hokey pokey, but he knows his herbs. Just put all your trust in him and do the full protocol. Good luck, brandi PS. Dr. J doesn't mind the publicity, he has written many books.
Brandi, that's very kind of you to offer us to stay in your place if it were ready. Thanks for the kind words and encouraging comments about the Center.
DId you ever go there for treatment yourself? Why did you chose meds after his protocol?
My wife and are are looking forward to going there and hoping and praying this will be the path that will help me to overcome this dreadful disease.
Thanks for wishing me luck. I will keep everyone posted as often as I can.
gwb
Frequent Contributor (1K+ posts)
Member # 7273
posted
quote:Originally posted by ott70:
quote:Originally posted by Brandimc: Yes - some of it is hokey pokey, but he knows his herbs. Just put all your trust in him and do the full protocol.
Gary,
To add to Brandi's comments, "yes" some of it does feel hokey-pokey. But does he ever know his herbs. If you are going to get any type of natural or homeopathic help, and are willing to get that help, then he has to be one of the best to see.
I was in the same frame of mind as you are. I'm engineer by occupation, so I don't have time for hocus pocus. And I'm still not overly convinced that some of the treatments helped me much. But just meeting with him and getting a natural solution to follow and actually feeling better after two weeks was all worth it for me.
If you do not like some of the treatments and feel they are not doing anything for you, then you can definitely request not to do them. Still, it's best to try and follow the protocol they set for you as much as possible.
Gary, safe travels to you and your wife and thanks for starting this thread to keep us informed of your visit.
God Bless, Derek
Derek, I'm going with an open mind and an open heart. I'm ready to do what it takes to get well. I will ask a lot of questions and if there's something I'm not comfortable with I will let them know.
But I really want to be open to trying unconventional therapy, because quite frankly, the traditional therapy has gotten me nowhere. I don't blame anyone for that. I have chronic late stage lyme disease and I know this isn't an easy fix.
Thanks for all of your support, encouragement and prayers!
gwb
Frequent Contributor (1K+ posts)
Member # 7273
posted
quote:Originally posted by Renee K: Gary
Wish you all the luck in the world. Alternative care has been a Godsend for me. It will treat the entire body and not just the bugs...the body systems all get messed up with this disease
Praying daily
Renee
Renee, thanks for wishing me luck. I'm definitely looking forward to the treatment. I admit I'm apprehensive about it, but at the same time I'm excited as it gives me a glimmer of hope knowing that I just might start getting better.
Thanks for your prayers. It means a lot to my wife and me!
posted
Gary, remember I talked to you before about my experience there? I did almost 2 weeks there. I decided to do meds soon after cause I wanted to see if I could beat it. I liked the center but thought my condition was too bad to just rely on natural stuff. goo luck! Remember after you try all the treatments, you can request certain ones more than others.
posted
Did a search to see if you had mentioned any treatment for babesia in the past. Couldn't find it. Have you? I had a big weight loss with babesia, which was reversed after considerable treatment. Just thought I would mention this, in case it has any bearing on your situation.
Best of luck at the clinic.
Posts: 8430 | From Not available | Registered: Oct 2000
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gwb
Frequent Contributor (1K+ posts)
Member # 7273
posted
quote:Originally posted by Brandimc: Gary, remember I talked to you before about my experience there? I did almost 2 weeks there. I decided to do meds soon after cause I wanted to see if I could beat it. I liked the center but thought my condition was too bad to just rely on natural stuff. goo luck! Remember after you try all the treatments, you can request certain ones more than others.
Brandi, I guess my lyme brain doesn't remember that conversation. Sorry.
How have you done on the meds? Are you better yet?
gwb
Frequent Contributor (1K+ posts)
Member # 7273
posted
quote:Originally posted by lou: Did a search to see if you had mentioned any treatment for babesia in the past. Couldn't find it. Have you? I had a big weight loss with babesia, which was reversed after considerable treatment. Just thought I would mention this, in case it has any bearing on your situation.
Best of luck at the clinic.
Lou,
My previous LLMD (don't have one now) said the tests showed negative for babs. He felt that I did have it though. I cannot handle abx anymore, so, no, I didn't get treated for it to my knowledge.
Which abx is used to treat Babs? I think what happened to me is about five months ago I foolishly got three steroid shots in my back for my severe leg pain. Dr felt that's what was causing the leg pain. Sad to say, the steroid shots did not resolve the leg pain.
After I got my third shot I became very sick and could hardly get out of bed for a month. I was extremely nauseated everyday and could only eat two or three saltine crackers a day. I finally did get a little better but I haven't been the same since those shots.
I believe the steroids sent me on a downhill spiral and I have never really recovered from it. I can only eat about 800 calories a day, have severe left side abdominal pain, neurological issues, weakness and very little appetite.
I have no doubt that the steroids compromised my immune system. I've lost 75 pounds in six months and am still losing two to four pounds a week. My muscles are wasting away and I look pretty bad. My butt looks like elephant skin.
I'm hoping Dr. J at this clinic in KS will be able to help me. I'm right next door to the clinic in a hotel tonight and start treatment at 8:45 in the morning. If all goes well I will continue with the treatments for two weeks.
Thanks for you well wishes, I will keep everyone posted as I am able.
posted
Yes, the steroid shots are probably at the root of your recent problems.
I hope the clinic will consider babesia. Treatment is usually mepron + zithromax/biaxin, or sometimes malarone. There are also some other anti-malarials that are occasionally used. See Dr. B's guidelines for babesia treatment discussion.
Posts: 8430 | From Not available | Registered: Oct 2000
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Abxnomore
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posted
Good luck Gary. I hope you will find some answers and a lot of improvement. I know you will keep us posted.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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Hope your first day goes well. The Crestwood Suites are nice to stay at and it's great that all you have to do is walk across the parking lot to the new clinic.
If I recall correctly, all they do the first day is the CRT, meet with a doctor to go over the results, BRS testing, and then some supplements. I don't think they put you on the detoxing protocols until the 2nd day.
Prayers for you that you find some help and relief.
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