This is topic SURVEY: WHAT HAS HELPED YOU THE MOST in forum Medical Questions at LymeNet Flash.


To visit this topic, use this URL:
https://flash.lymenet.org/ubb/ultimatebb.php/topic/1/47529

---

Posted by daystar1952 (Member # 3255) on :
 
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.

Thanks!
Margie T
 

---

Posted by hopeful123 (Member # 3244) on :
 
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
 

---

Posted by AZURE WISH (Member # 804) on :
 
- 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.
 

---

Posted by mlkeen (Member # 1260) on :
 
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.
 

---

Posted by daystar1952 (Member # 3255) on :
 
Azure...what about expressing yourself through art?
 

---

Posted by bettyg (Member # 6147) on :
 
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!
 

---

Posted by 5dana8 (Member # 7935) on :
 
All of the following:

antibiotics

anti-fungals

suppluments

detox

& prayer.
 

---

Posted by AZURE WISH (Member # 804) on :
 
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.

Sorry this is so long
 

---

Posted by concerned mother (Member # 8128) on :
 
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!

 

---

Posted by Aniek (Member # 5374) on :
 
Proper pain treatment!

Yoga

Antibiotics

Lymenet and my local support group
 

---

Posted by johnlyme1 (Member # 7343) on :
 
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.
 

---

Posted by serendipity (Member # 8474) on :
 
Finging a LLMD who is proficient in energetic testing.

My recovery began during my first appointment with him.
 

---

Posted by Ladylee210 (Member # 9945) on :
 
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.
 

---

Posted by karatelady (Member # 7854) on :
 
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

[ 16. September 2006, 08:03 AM: Message edited by: karatelady ]
 

---

Posted by daystar1952 (Member # 3255) on :
 
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
 

---

Posted by AZURE WISH (Member # 804) on :
 
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.

sorry it is so long. Hope it is not too rambly
 

---

Posted by kam (Member # 3410) on :
 
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.
 

---

Posted by Ladylee210 (Member # 9945) on :
 
Kam I hear you on the cost of certain things.
 

---

Posted by nan (Member # 63) on :
 
Ditto what Cave says about

longterm antibiotics!

Tindamax really helped

Adrenal Complex

Adrenal Essence
 

---

Posted by Ladylee210 (Member # 9945) on :
 
KAM...

What is "RED"?????
 

---

Posted by daystar1952 (Member # 3255) on :
 
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
 

---

Posted by Lymetoo (Member # 743) on :
 
1. antibiotics, esp Biaxin
2. babesia treatment: clindamycin/quinine/artemisinin
3. Xango [mangosteen juice]
4. A POSITIVE ATTITIDE
5. PRAYER
6. A good DIET, including low carb, no sugar
7. Rife!
 

---

Posted by shazdancer (Member # 1436) on :
 
1.) Lymenet -- gave me the knowledge

2.) Ceftin -- kicked an early infection into remission, though the $$$ ran out so I couldn't continue treatment

3.) Mepron/Zith -- for babesia, kicked it HARD into remission when I relapsed

4.) Hot water soaks -- aah!

5.) CoQ-10, magnesium, and a good multivitamin

Margie, maybe the responses you are geting are dictating the form your poll might take...

Most effective meds

Most effective supplements

Most helpful non-med support

Best educational resource

Regards,
Shaz
 

---

Posted by Lymeindunkirk (Member # 7118) on :
 
Bicillin shots three times a week has helped the most.
 

---

Posted by Lynette (Member # 5993) on :
 
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
 

---

Posted by efsd25 (Member # 2272) on :
 
Summary: Infected in 1987, not diagnosed until 2000. First 2 years on abx, then mainly rife & supplements since then.

What has helped me the most:

1) Rife
2) Exercise + detox(chlorella, milk thistle + lipase concentrate)
3) Acetyl L-Carnitine, SAM-e, CoQ-10, Iodine supplement & Alpha Lipoic acid(congnitive & energy)
4) B vitamins + Mg
5) Diet low sugar/carb (don't feed the bugs)
6) Steering body towards Krebs cycle and away from Cori cycle(oxidize sugars don't ferment them)
7) Transfer factor and Host defense (Immune).
8) Melatonin (for sleep)

It works! Am working full time and climbing, in fact, hope to climb Kilimanjaro this December!
Based on a 1 to 10 scale, I am a 9.

To your health!! Ernie

[ 19. September 2006, 11:12 PM: Message edited by: efsd25 ]
 

---

Posted by Andie333 (Member # 7370) on :
 
1. My LLMD

2. Lymenet (without this board, I would have known nothing about this disease; without the support of the people here, I would have felt lost)

3. longterm antibiotics

4. treating co-infections

5. supplements

6. incredible support of SO and friends

7. detox foot pads

8. diet (no white foods)

9. sleep

10. believing I could beat these diseases and have a full recovery

11. prayer and meditation

12. two faithful, furry friends, one of whom gets me to the park each day
 

---

Posted by handyman (Member # 10127) on :
 
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.
 

---

Posted by imanurse (Member # 7022) on :
 
What has helped me the most ?

Plain and simple: Long term antibiotics
 

---

Posted by Walnut (Member # 6585) on :
 
1. New LLMD

2. Get diagnosed with and treated for bartonella
- 3 months of flagyl-biaxin
- 3 months of cipro
 

---

Posted by treepatrol (Member # 4117) on :
 
I thought I answered this the other day? dejuvue sp?

Anyway

1.God
2.My LLMD
3.this site lymenet
4.abx's


Sofar
 

---

Posted by Lymetoo (Member # 743) on :
 

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??
 

---

Posted by JimBoB (Member # 8454) on :
 
READ the Healing Lyme book by Stephen Buhner.

FOLLOWED the Healing Lyme Book.

Stopped abx.

Continuing to FOLLOW the HEALING LYME Book.

Patience.

Stopping HOT herbs.

Jim
 

---

Posted by humanbeing (Member # 8572) on :
 
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
 

---

Posted by Lymetoo (Member # 743) on :
 
Might be helpful for each person to rate how they are doing physically ... maybe on a rate of 1 to 10?
 

---

Posted by Lymetoo (Member # 743) on :
 
There are a lot of things that helped me, including antidepressants [not SSRI's]... I listed the main things that helped.

I also had mercury fillings removed.
 

---

Posted by Andie333 (Member # 7370) on :
 
In terms of rating recovery (on a 1 to 100 scale):

When I started treatment, I was at about 17 or 18%.

Now, after 14 months of treatment:

I'm at 75%.

For me, that's not completely well, but it is a LOT of progress!

Andie
 

---

Posted by Lymetoo (Member # 743) on :
 
I'm a 9 with 10 being best. 95% well
 

---

Posted by jarjar (Member # 8847) on :
 
1 The Marshall Protocol

2 Glyconutrients

3 Diet, cut out sugar etc.

4 Nature's Biotics


All of the above makes me feel like a human being again.
 

---

Posted by daystar1952 (Member # 3255) on :
 
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?

Margie
 

---

Posted by Lymetoo (Member # 743) on :
 

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?

---