Topic: If you could pay for all treatment what would you do?
Annie C
Frequent Contributor (1K+ posts)
Member # 14
posted
If you could afford any treatment available. What would you do and or where to go get it?
Are there facilities that specialize with Lyme?
-------------------- May God Bless you every day. And Never say never and do not give up no matter what. We need you to help others. Posts: 1288 | From Tetons Wyoming | Registered: Oct 2000
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I would do a lot of things to make sure my environment was the best it could be --best water filtration system, all organic foods, all natural cleaning products.
I would get every test possible to check out my entire immune function.
As much as possible I would make sure my environment was healthy. I would remove amalgam fillings (actually am planning on this) and address heavy metal toxcity, parasites etc.
I would LOVE to add in acupuncture and any other alternative treatments that would aid in relaxation.
I would go to one of the top rated LLMD's and hope to have a treatment team that would also involve someone who specializes in supplements/herbs and ask that they consult prior to my appts so that we could really focus while I was there.
Yes...I have thought about this a bit!!
Posts: 376 | From New York | Registered: Jan 2011
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Annie C
Frequent Contributor (1K+ posts)
Member # 14
posted
Now that is some sound advice. I know acupuncture does wonders for everything, Which is why Ins. Co. will not pay for it.
Thank you.
-------------------- May God Bless you every day. And Never say never and do not give up no matter what. We need you to help others. Posts: 1288 | From Tetons Wyoming | Registered: Oct 2000
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I would see Dr K in WA, jump to see Dr. S in FL for his thoughts and maybe a few other LLMDs for their thoughts and devise a plan. Of course, I wouldn't need to be on a waiting list as I'd just 'pay them off.' Money talks!
Oh I'd probably tell the big name Naturopath in Reno who charges a huge hourly fee I could never afford to spend 20 hours looking at my records as well and order whatever tests she feels is necessary. I'd pay Dr. Burrascano to live in my home as well as my personal consultant. lol.
Hell, whip out another $600 for AI treatment, buy myself a big nice Bionic 880 to toy with, a cold laser machine, an industrial rife machine and have Bryan Rosner on standby as my full-time rife consultant.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
I believe the key is in the testing and the interpretation of those tests.
I am in NY and this is the only state (that I know of) that limits its residents to what kind of medical testing they can do.
I would find the best team of doctors I could; doctors that are experts in functional medicine, environmental medicine, tick bourne diseases, mold, metals, bacteria, viruses, bio-toxins, mycoplasmas, mycotoxins, and DETOXING!
I would live in a remediated, mold free home. My home would be climate controlled for mold control and set at 72 degrees.
I would have a garden & a gardener.
I would have a pool, a hot tub and a sauna.
I would have business with a health spa, fitness center & other ways to detox ... helping people to get well.
I would educate the 99% of doctors who are turning people away sick.
I would go to a lot more of the seminars and summits that the top doctors are speaking at... as long as they are talking about how to get well!
I would focus on positive goals and do more fun stuff. Travel across Europe, go on a safari in Africa, go scuba diving, go golfing.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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(I've been chatting with Annie and know her from 11 yrs ago)
She knows she has Lyme, but is not well after at least 11 yrs of treating. Her family is finally coming around and is willing to get her the best help they can.
Where/WHO should she turn to so she can get well? .. and what treatments?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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quote:Originally posted by Annie C: Now that is some sound advice. I know acupuncture does wonders for everything, Which is why Ins. Co. will not pay for it.
EDIT: I won't deny that there are huge problems with the insurance and healthcare industry, but I think that for some of us an inherent distrust of "big pharma" tends to cloud our judgement.
Posts: 340 | From san francisco, ca | Registered: Nov 2010
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
I have a good friend, for whom money is not a problem (within reason, not a millionaire or anything), is finding her way thru this illness at an alarmingly fast rate, I think due to the wise choices she is making.
She has had Bartonella (20/20 hindsite) as long as she can remember. She's had Babesia about 10 years and she thinks lyme was added to the mix July '10.
She found a good LLMD in September but became incredibly ill (feeling as though she would die, couldn't breath or sleep, heart rate around 145 for 5 days straight) from his aggressive treatment. She stopped his treatment.
In Oct. '10, she found a lady who treats w/ Cowden, GSE, minerals.
My friend was aware that herbs might not be enough to get her well (and she was too sick to do much more than lay around) so she found an excellent LLMD (Dr. S., MD).
About 3 months ago, she realized that her body is pretty messed up (liver, adrenals, etc) from years of these infections so she found an RN who knows how to get the organs healthy (liver packs, bile flushes) and uses natural products to feed them.
During this time, I watched her get better and better at an alarming speed. She's been back to work for 2+ months now, and running her household again.
Last month, she realized she needed help with the pain of lyme&co and found an excellent acupuncturist (located in our local hospital, paid for by insurance, go figure!) who after only 2 treatments has improved her health greatly.
What has impressed me is that for being as sick as she was, in only 6 months, she's got her life back again. She's not 100% but I bet she's 80+% which is really good compared to most.
And even after she's finished treating lyme&co, I know she won't stop until she's got 100++% of her health back.
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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My former chiropractor used acupuncture and insurance paid for it just like they would any chiropractic treatment.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
17hens, you friend is very practial with her approach. She understands there is not one magic pill or combo of abx that is going to help her.
I hope my chiro that I'm looking for does acupuncture too. That would be one like one stop shopping.
I did acupuncture back in '99 -'01. Had a great body therapist. This was early into this illness.
But I only had time to do this stuff during a long lunch hour. I would come back to my highly stressful office and within 2 hrs of work all my benefits of body work or acupuncture was wasted and gone.
Today I know how to let myself rest after such body work to gain some benefit.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Seek, you're really in La La Land. lol
Enjoy the dream. I hope you hit the big lottery this weekend.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
If money were no object, I would probably see Dr. K in WA.
I went to Germany for an alternative treatment there and am well, but I did a lot of detox, replenishing minerals, etc. after I got back, including continuing with the Bionic 880 treatment. That is also a possibility.
If you've done abx for 11 years, I'd see someone like Dr. K, for sure.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Acupuncture is a wonderful help, but it is expensive and needs to be done regularly. In California it is required by law to be covered by insurance the same way any other medical treatment is covered. Unfortunately, for me, Medicare is a federal program and will not pay for it. So I no longer get it.
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Six, I would also travel across the country for Dr K. I guess I better play the big lotteries this weekend.
Don't have any wealthy family members to leave me their money. Can't work for it. I think I'll just trust in God, if it's meant to be, it will be.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
Annie - I would go to Dr. K's clinic in Seattle. This is what I just did. Very happy with my experience. I saw one of his personally trained docs (you don't usually get to see Dr. K on a first visit). But I was very happy with everyone there. Came back 2 weeks ago. Awaiting some lab results. Will have a phone consult in a few weeks, then we will tweak my protocol. I think Dr. K. has figured out more pieces of the puzzle than ANYONE else. Read everything of his that you can get your hands on, watch every video, etc.(he is very generous with the info he publishes, so there are tons of presentations and papers of his available for review; google him, etc.) Before making this type of investment, you want to be sure it's the right fit for you. It feels right for me. But we are all different. Good luck.
Oh, and read the Allergie-Immun thread. I think this is an important treatment to consider.
momlyme - Ditto to EVERYTHING you said!!
17hens - So happy to hear of your friend's progress. That's great.
Posts: 2238 | From East Coast | Registered: Jul 2010
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
If money was no option I would do like I have done for the last 2 yrs. Take my meds in sequence prescribed. IV if offered when I was able. And then I would seek treatment in India to kick it on its way out with stem cells...
I know a woman who is well or at the very least in remission that way. And now treating her child the same...
-------------------- 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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posted
Hubby is in his 11th year of illness as well. If money was no object right now I would take him to one of the 2 or 3 LLMD's who have hospital privileges and bombard him with babesia meds. And the doc would be available to answer any and all questions!!!!!!!!!!!!!!!!!!!!!! Not enough face time with the doc is a major stumbling block in my opinion.
For hubby babesia seems to be the major undertreated infection that is holding him back. He needs to be in the hospital because the very high fevers keep interrupting his treatment and low dose treatment in the past was just bacteriostatic and at this point he is willing to risk everything to knock out this infection.
Of course in this imaginary hospital he would have a personal nurse at his side 24/7 and he would be able to take any supplements he wanted. Plus regular massages and foot detox baths and whatever other alternative treatments he thought would help.
Would also have a Chinese herbalist on the medical team. Plus a microbiologist who could help determine what meds his particular strains of babs and other infections are susceptible to.
And we would run many more nutritional tests and other tests from specialty labs that are so expensive otherwise.
Bea Seibert
P.S. Since we all know funds are limited then I would start with bloodslides from Clongen and also some tests from F lab. In my opinion it is usually some unknown or undertreated infection that is holding most people back.
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
folks, acupuncture isn't always expensive. I was stuck with no money and a relapse last year in a very rural area and I found a cheap acupuncturist. Here's the deal:
-yes, it matters VERY MUCH what acupuncturist you get- it seems to be very practitioner-dependent. It also matters in a lot of cases that you can do it frequently- we're very complex cases with a lot of things wrong with us and we often can't afford to go very frequently. once a week or more is a good frequency for people seeking inflammation relief or pain relief.
-however, there has been a movement in the last few years in the acupuncuture community to set up what are called 'community acupuncture' clinics (they also phrase this as 'offering acupuncture in a community setting', a term that usually means something different (public health) in regular MD lingo).
-community acupuncture is sometimes less comprehensive than a full treatment, but they assume that it may mean you can come more often. This can sometimes be key for some patients.
-community acupuncture is done in a group room, in armchairs- so they don't do points on the back or torso like they would if they had you on a massage table with your clothes partially off in a regular session. In a community acupuncture session they only work on points on your arms and lower legs that they can reach while you're in sweatpants or other 'roll-up' pants or shorts, and on your head and upper torso. It's a way that htey can treat multiple patients at once since a large part of the time in an acupuncture session, you're just sitting there waiting for the needles to do their work anyway, and the practitioner isn't actually doing anything to you. So they can rotate around a room of patients and charge everyone less.
-this usually costs $15-$25/session, and they're usually more willing to work with you if you're disabled/broke/etc in this situation.
-I've found clinics in some very surprising places that offer community-model acupuncture.
-------------------- Symptom Free!!! Thank you all!!!!
MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
Also, as for all this Dr K stuff- I treated for years with an LLMD who was a big follower of Dr K's and I sent many other patients to him, and even went to some appointments with the other patients. The more like Dr K he became, the less he seemed to actually do for their Lyme and the more he seemed to focus on the idea that 'other things were wrong on a deeper level... that were going to be hard to treat'. Every visit was another round of supplement suggestions that was supposedly showing 'great results' (they weren't selling the supplements at his clinic or pushing them on me, just were big believers in Anything But Antibiotics). I eventually decided that he was lost in a sort of religious denial of the need for aggressive antibiotic treatment and I realized I hadn't met anyone who's really gotten effective treatment that seemed to turn them around from that particular doctor.
After a few years of this and becoming more disabled, some of my friends were absolute angels and gave me some cash to go see anoter doctor and pay for some tests (and a lot of Lymenet people saved my butt by sending me their leftover supplements in the meantime, thank you all!)
I eventually ran away to a more conventional LLMD (one of the Maryland guys, who's sadly not taking out-of-state patients), got the proper testing and aggressive antibiotics that I needed, and got better almost immediately upon finding the right problems with the testing. He even talked me out of spending more money on testing till we got initial results back.
Incidentally all we did was use the Clongen blood slide test ($100ish) which uncovered a lot of answers about what I had, and showed us that I needed to be on bartonella medication and that it was going to be stubborn (which helped me know what was happening when I didn't respond to it immediately).
The biggest good fortune I had in all of this was that I had really, really good information from being able to be on Lymenet a lot (I know some people can't read anymore or use computers due to Lyme so this isnt' easy for everyone). Even while I was treating with the supplement guy, I was able to at least learn more about aggressive antibiotic treatment here at Lymenet and was able to get him to prescribe (though often against his advice- but he trusted that the info I was getting was good and that I knew what I was risking/what I was doing even though it wouldn't have been his preferred way to treat me). I was very lucky to make the best out of a less-than-ideal situation by taking control over my treatment thanks to all the Lymenet info.
-------------------- Symptom Free!!! Thank you all!!!!
Blood Brain Barrier info: see my thread about this, I have linked several articles by MD's and supplement info
Read Buhner, Healing Lyme and follow the protocols, with or without abx
My LLMD thinks that the products by Beyond Balance are the best herbals he has seen formulated for lyme. They sure have helped me, and fast too. I am still working on it fyi, and am far from cured, but the progress has been excellent after only six months and that is pretty good. I am really happy with them.
I think cutting back chemical exposure is terribly important as adjunct in any immune illness. A really good water filter which removes a long list of chemicals, metals, MTBE, etc from the water would be really important. My favorite is the multi pure (I do not work for them) www.multipure.com or is it .org? See the performance data sheet, it's absolutely remarkable and the water tastes really clear/good.
Organic and pesticide-free foods, hormone free, etc really important
The above is not a treatment plan nor is it to be considered medical advice. Instead, please consider these as ideas offered based on personal experience in my own healing journey, to ask your own doctor about. Ask how these ideas might be helpful, or not helpful, to you in your own unique medical case. Again the above is not advice, it is questions to ask your doctor about.
Best, CI
The above information has not been evaluated by the FDA and is not intended to diagnose, cure or prevent any disease.
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