daystar1952
Frequent Contributor (1K+ posts)
Member # 3255
posted
I am intiating the beginnings of a survey to help some researchers determine what helps lyme patients the most.
It would be so helpful if people could list the one main factor that helped them in their path to recovery...or list several ....in their order of importance. This could include natural remedies or any sort, prayer, things like the Marshall protocol, color therapy, sound therapy, uplifting movies/music, etc...antibiotics,(if so, what kind) thyroid treatment, antimalarials...whatever.
We want this to be a helpful resource for lyme patients and if we get enough response and can gather it together in a meaningful way, it will be posted on a university website.
Any ideas on how to present or organize this survey would also be appreciated.
hopeful123
Frequent Contributor (1K+ posts)
Member # 3244
posted
can't say just ONE thing.
Taking atx - a variety, seeing which "cocktails" worked the best.
dietary restrictions - sugar and yeast free - as much as possible
believing i can get better with the right treatment
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
- My llmd - I was a mess when he started treating me. If it were not for him I would be in a wheelchair completely paralyzed by pain or dead.
- Abx (there is a long list that helped so I will just mention the ones that didnt work - levaquin, amoxicillin)
- Supplements to counteract the side effects of the abx. without these I would have had to combat all kinds of secondary issues. (the list of supplements have changed many times depending on my needs at that particular time)
- The support of my family. There were points where I couldnt walk or open a bottle of water or get my pill bottles open. They also have taken me to various drs and found my current llmd.
- The cats that have stuck by my side.
- Trying not to eat to much junk food and drinking lots of water.
Sorry I couldnt pick one thing. Some of things things wouldnt have been possible without one of the other things so I cant leave them out.
mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
long term oral tetra, followed by diflucan and low carb diet to purge yeast.
Discovering food sensitivies what had lyme like symptoms brought me from 90 to 100%.
Been well almost 3 months.
Posts: 1572 | From Pa | Registered: Jun 2001
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daystar1952
Frequent Contributor (1K+ posts)
Member # 3255
posted
Azure...what about expressing yourself through art?
Posts: 1176 | Registered: Oct 2002
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bettyg
Unregistered
posted
1. This lymenet board with its 24/7 SUPPORT/EDUCATION as well as my SPOUSAL SUPPORT as well as my SPOUSAL SUPPORT: :
. talking to others walking in my shoes! . Learning from them, . tips on what to avoid, . and reading TREEPATROL'S NEWBIE LINKS, .and taking certain ones to my LLLMD/PCP.
2. GOOD LLMD who listens to me.
3. Having complete body labs done to find out what else is wrong with me and to treat those things:
. food allergies, . environmental allergies, . EBV, HHV 6 virus, & simplex herpes virus . other deficiencies showing up
4. READING, READING, READING online here and LYME BOOKS by others. Bettyg ...great survey Margie!
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
All of the following:
antibiotics
anti-fungals
suppluments
detox
& prayer.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
As for the art -
The majority of the past 6 years I have been far too ill to physically work on my art.
And for almost all of the time I have been able to work on it has been dictated and limited by the kind and severity of the symptoms at the time.
However, Knowing it was waiting for me was helpful and gave me hope even during the roughest times- the ideas were always there. It was nice to know that my art/creativity didnt abandon me.
I think in some small way it let me keep a piece of myself when just about everything had been taken.
Also when I get to work on it a little now it makes me feel like I am getting back to me.
Once I became so sick with lyme I was disabled I became a really watereddown version of myself. Just because I was in so much pain and so tired and I never got past doing the things I needed to do.(get dressed, eat, etc)
At the points I was in so much pain I couldnt walk or hold onto a fork my artwork was really not at the forefront of my thoughts. Having a minimal degree of functioning was.
I am not saying that it hasnt helped but I think the other things have healed my body and my being through my body more.
the best thing it has done for me (when I am actually capable of working on it) is giving me back a huge chunk of my idenity....
It makes me feel much more whole which is saying alot because this disease can turn ones life into swiss cheese.
I do think anything that creates or keeps hope is helpful to healing because I think that I probaly would be much sicker if I had ever given up hope.
posted
Our two new additions to our family. Earl 8months and Diesel 4 months (Bassett hound puppies) they sure have helped my son to have some better days!
I think dogs are great therapy!
-------------------- Amy Holloway Posts: 255 | From Michigan | Registered: Oct 2005
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Proper pain treatment!
Yoga
Antibiotics
Lymenet and my local support group
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
Energenic testing was the most influencial thing that I did. After starting to us this testing to guide treatment on all fronts my progress started to unfold.
Posts: 582 | From milwaukee wi | Registered: May 2005
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posted
Good Lyme understanding Doc. Finding the right mix of meds (which could go on for yrs.) Dealing with yeast issues (meds and no-no foods) Praying. Finding the right herbs and natural mixes. The courage to fight thru it all. HBO treatments. But most of all not giving up.
Posts: 374 | From NJ | Registered: Aug 2006
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posted
1. Rife machine (abx only 6 months) 2. Xango (Mangosteen Juice) 3. Steam/sauna tent with oxygen & ozone pumped in 4. detox foot pads 5. juicing twice a day 6. proper diet for Candida (no sugar/good carbs) 7. colon/parasite cleanse 8. forgot to mention getting mercury out and one abscessed root canal
daystar1952
Frequent Contributor (1K+ posts)
Member # 3255
posted
Serendipity and Johnlyme...can you explain the energetic testing? Is that with the vega machine or is it muscle testing?
Wow...what a variety of answers! I need as many responses as possible...even if you are repeating what someone else wrote....especially if you are repeating because then that means the treatment is effective for more than one person and people need to know about it. Thanks Margie
Posts: 1176 | Registered: Oct 2002
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
Like concerned mother I think the benefit of having and animal in a chronically ill persons life is unfortunately quite often overlooked.
I am not sure the type really matters. We just have to choose one that we are well enough to care for. Even though I am much better than I was I know there is no way I could care for a dog... although I love them.
At some points my family was taking care of my cat. My cousin who is diagnosed with cfs had a rat who she adored.
They are much more loyal than any of the human friends I had. (MY family has been great and stuck by me I am talking strictly non relatives)
At times when I am too sick to get up off the couch they sit next to me and purr away. They are great company becuase they never bring up the illness or how much I can or cant do. And they are so forgiving. If me being sick makes him get fed late or I cant play with him when he wants he doesnt get mad.
And both cats I have had during the time I have been disabled with this disease always seem to know when I am feeling worse. Then they dont leave my side.
The cats in my life just make my soul smile and produce such positive energy which I think aids healing.
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
1. My LLMD
2. ABX (Although I really did not know if they were going to kill me off or the bacteria first when I started out.)
3. The Power Chair
4. Rosie, the service dog (The first service dog I had did not work out. One reason was I was not well enough to take care of him. I have improved and have been able to get the second dog out of the house more which is good for both of us.)
5. Trying to stay with the food intake motto :If it is white it ain't right"
6. Supplements
7. Detoxing
8. Water, water, water
9. Learning to give myself lots of down time.
10. Last but not least...prayer and God's help.
I like the drink called "RED" but have not been able to routinely afford it.
I also felt the podi patches helped but have not been able to routinely afford them as well as other detox and supplements. It is hit and miss. Mostly miss.
I'd also like to add an acupuncturist to the team but that is on the back burner for now.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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What is "RED"?????
Posts: 374 | From NJ | Registered: Aug 2006
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daystar1952
Frequent Contributor (1K+ posts)
Member # 3255
posted
I may as well add my two cents as to my experience.
I feel that long term CONSISTENT antibiotics...switching types every few months has been the of the greatest benefits. When I was treated on and off by a lyme literate doc...5 or 6 months on and then a year off....I would get to a fairly decent point and then when taken off I would backslide. I could never really get ahead.Beta blockers also helped very much with the Postural Orthostatic Intolerance and fast heart rate.
Then I switched docs. I have to travel far but it is worth it. He has treated me consistently with high enough doses. He ordered the Bowen test which said I also had babesia. I had been tested before but always negative. When treated for that, I improved another whole degree.
Then I was tested for thyroid...was only low normal but was treated anyway...and wow what a difference that made. As I went along I also added humor, beautiful colors (himalayan salt lamps, took up painting, listened to very soothing music. And...of course the spiritual aspect is one of the most important factors, I feel.
Whole food supplements vs vitamin pills
low sugar diet
I feel it is never just one thing which helps. Oh yes, and family support all along was an immense help
Posts: 1176 | Registered: Oct 2002
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posted
I have been in a short remission once, and am now skimming the surface of another. The things that have helped me most:
1. Lymenet and knowledge of this disease 2. Abx, I think rotated works best 3. Marriage & family counseling 4. Wilson's Syndrome treatment, T3 therapy 5. Dietary changes, addressing allergies and low carb
Posts: 37 | From N. Canton, OH, Stark | Registered: Jul 2004
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posted
3 weeks oral doxycycline, stay out of sun,take with plenty of water. I had ulcerative colitis, alcohol intolerance, cognitive/emotional problems etc. Now all gone. I tested neg both tests but insisted on doxy. I've had atleast 6 tick bites i know of, many more i dont? Doxy works good.
Posts: 1 | From Daniels township Burnett co. WI | Registered: Sep 2006
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2. Get diagnosed with and treated for bartonella - 3 months of flagyl-biaxin - 3 months of cipro
Posts: 187 | From Washington, DC | Registered: Dec 2004
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
I thought I answered this the other day? dejuvue sp?
Anyway
1.God 2.My LLMD 3.this site lymenet 4.abx's
Sofar
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
quote:Originally posted by handyman: 3 weeks oral doxycycline, stay out of sun,take with plenty of water. I had ulcerative colitis, alcohol intolerance, cognitive/emotional problems etc. Now all gone. I tested neg both tests but insisted on doxy. I've had atleast 6 tick bites i know of, many more i dont? Doxy works good.
3 weeks? Caught it early I hope??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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JimBoB
Unregistered
posted
READ the Healing Lyme book by Stephen Buhner.
posted
Hi Margie I am not "well" yet but what got me out of bed...
Dr. S who believed in me-sent blood to stonybrook Dr. P who put me on massive abx Dr. K who slowed down the abx so I didn't die of herx Dr. S who put me on IV when 8 months of orals weren't doin it... time ketoprofen hubby Pug dog "Finnegin" faith, meditation watching "friends" lymenet sleep/not working painting the shoreline reading novels writing Courage to accept the illness
Jury is still out
-------------------- We are spiritual beings on a human journey...
All of the above makes me feel like a human being again.
Posts: 805 | From Utopia | Registered: Feb 2006
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daystar1952
Frequent Contributor (1K+ posts)
Member # 3255
posted
Seems like there are a few things people have in common that have helped them but what has struck me is that everyone is certainly different and there are many helpful treatments listed that are not repeated by others. I wonder what this means? Antibiotics seemed to be the most consistent answer but after that everyone's answers vary greatly.
Does this mean that it's supporting our immune system in any way we can that helps or is it a faith factor? Any thoughts on this?
quote:Originally posted by daystar1952: Seems like there are a few things people have in common that have helped them but what has struck me is that everyone is certainly different and there are many helpful treatments listed that are not repeated by others. I wonder what this means?
That's why I mentioned adding the rating of how we're doing. I'd be willing to bet that those who follow a no sugar diet, and do other natural things for their bodies are also feeling better!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
Great question. I can't add a whole lot, since I am not really improving... been on abx for 15 months and they make me feel crappy and gain weight. Hate them and am contemplating stopping them altogether. I do need pain meds though - Cymbalta for neuropathy, and an occasional Vicodin and Soma for muscle spasms.
The number one thing that made a difference was MAGNESIUM. Saw a major decrease in several symptoms almost immediately once I began supplementing. However, this is treating a symptom rather than a source....
Scalding hot baths with Epsom salts and peroxide to help relax muscles, ease pain, and sweat out toxins. Would buy a hot tub if I could!
A good massage to ease pain, stimulate circulation, and aid lymph system in removing toxins.
No-sugar diet helps too, but to be honest, it is very difficult to do when I feel so icky. I don't feel like cooking, I just want a bowl of cereal, ya know?
Posts: 220 | From central TX | Registered: Jun 2005
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daystar1952
Frequent Contributor (1K+ posts)
Member # 3255
posted
Texas Chaos.....I have found that a low sugar/refined carb diet is also very helpful.....even before I knew I had lyme but you are right it is difficult to stick to.
It's interesting that you mentioned magnesium. I have begun using transdermal magnesium in the form of magnesium oil from seawater. Too soon to know if it's making a general overall difference. But...it's supposed to be absorbed better that way....almost equal to injections
Posts: 1176 | Registered: Oct 2002
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Day star
For me it wasn't all one thing but a combinations of all things listed.
I have read the pages & the things that seem to help the most are-anything that helps kill BB and tons of stuff like nutitional & supps ect..That support a healthy body & immune system.
And what ever brings comfort and inner peace threw it all.
Diets and certain supps may vary so much because lyme hits some people in different areas. Like if you have mainly joint & inflamation problems you may take alot of stuff for this. But if your have mainly neuro and or nerve problems different things may be used.
Its such a strange disease and hit so many people differently.
For me I had such a high germ load & very bad neuro problems that I needed alot of abx's for a long time & likewise for the co's as well. Others find different killers like rife & herbs.
So there's killers & supportors.-A wide range of both
Sorry I probably rambled here a bit
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
Undoubtedly, without a moment's hesitation, removing root canals and dental infections/cavitations and detoxing heavy metals and dental neurotoxins, put me on the road to total recovery.
Posts: 9834 | From Washington State | Registered: Oct 2000
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