What is your best kept secret weapon in fighting this disease?

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KeepHope
Regular Member


Date Joined Oct 2008
Total Posts : 222
   Posted 5/20/2009 12:16 AM (GMT -6)   
If you could share something that has really worked for you either in killing bugs or in treating a symptom that you have found really works well and others do not usually seem to talk about it much or know about it...

What would it be??

Post Edited (KeepHope) : 5/21/2009 10:25:04 AM (GMT-6)


KeepHope
Regular Member


Date Joined Oct 2008
Total Posts : 222
   Posted 5/21/2009 10:26 AM (GMT -6)   
Or what is something you just could not live without that is in your group of treatments and therapies etc?

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 5/21/2009 10:49 AM (GMT -6)   
I find that supplements help me out a whole lot. It helps with the brain fog and gets my body balanced out. I would never want to be without them. I also take a low dose of pain medication. I would never want to be without them, for now, because they help me get through the day and help me push myself to do things. I know it probably doesn't sound like much, but this is all I have right now that helps.

I forgot one more thing that I've been doing for over a year now. I take a powdered energy drink to give me a little energy. It's full of vitamins and has no sugar in it. I take it every morning to get me going. I also rub a muscle rub on my muscles when they are hurting called " Sombra". This is the best muscle rub I have ever found. I used to work for a chiropractor and he used it on his patients. This stuff gets deep down in your muscles and relaxed everything including your senses. It's very calming.
2003 symptoms started with very intense panic attacks and anxiety. Also had sound and smell sensitivities. Was in and out of the hospital from 2003-2005. Diagnosed with panic disorder.
2007 found an LLMD and was diagnosed with Lyme. Didn't start treatment.
2008 symptoms came back with a vengence. Muscle pain, joint pain, floaters, stiff neck, rib pain, slow thinking, brain fog, etc...
2009 went back to see LLMD. Diagnosed again with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Biaxin 250mg to start (starting slow and working my way up, Mepron(babesia), Ultram(muscle/joint pain), Thyro Complex 60mg(Thyroid), Probiotics ,Caproyl(intestinal candidas),Psyllium Powder(intestinal cleansing support),Bentonite Magma(absorbent aid for intestinal detoxification)
-Plus a ton of other supplements

Post Edited (CajunGrl) : 5/21/2009 10:57:13 AM (GMT-6)


Dowa
Veteran Member


Date Joined Sep 2008
Total Posts : 1120
   Posted 5/21/2009 11:01 AM (GMT -6)   
Sauna! Infrared if possible. Detoxes whatever is ailing you. Lyme or otherwise. Magical...  D

nefferdun
Veteran Member


Date Joined Feb 2008
Total Posts : 900
   Posted 5/21/2009 2:25 PM (GMT -6)   
Taking herbs at 3-4 times the recommended dose. And lots of them. I see my skin improving from the bartonella "things". My mind is staying clearer. I have more energy and motivation to do things. Most of my headaches are gone and I seldom have twitching or chills or hot flahses. The following is divided into three doses.

HH capsules - 10 a day (2500mg) plus 3 1000mg of another brand houttuynia (should be 16 HH but expensive!)
TOA free cat's claw - 750mg day
75 drops cumanda or quina a day
grapefruit seed extract 750 mg a day
Reserveratrol/ Japanese Knotweed 300mg day - raising to 600 mg (should be 1200)
Ecklonia cava extract 3600 mg day
Quercetin 1500mg day
Pau D'Arco bark 600 mg day

magnesium, vitamin B, B12, multi vitamin supplement with amino acids etc., fish oil
No sugar, no red meat
ground flax for omega 3, green tea decaf,

50% DMSO rubbed on skin after bath

I have clove bud oil for bartonella but don't use it because it is so strong and burps up. I also have andrographis which I plan to add when I run out of the eclonia cava and pau d' arco. I take about 40 pills a day.

JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 5/21/2009 4:17 PM (GMT -6)   
I have no secrets. I've spillled my guts on this site. One thing I have ALWAYS done is epsom salts in my bath.
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has.  - Margaret Meade
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3, possibly just tested positive for koseri IgA, Morganella motgani,Rocky Mountain Spotted Fever (RMSF - yay! another acronym), Typhus Fever, Klebsiella pneumonia, Proteus miabilis, Citrobacter i IgA, Hafnia alvai IgA, NKC4, Interleukin 4 (IL4), IL8, Immunobillin (IM01). 
Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Acidophilus, Lyrica 600mg
"How much more can I take?", songhttp://www.youtube.com/watch?v=5gHiR1xeOSs


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 5/21/2009 4:22 PM (GMT -6)   
Things I've found helpful:

Magnesium keeps muscle cramps away, improves bowel function, and helps me relax
Vitamin B12 (methylcobolamin) for brain function, sulfite intolerance, and energy
Nettles for joint pain
Ginger because it feels good - raises body temp (I can break out in a sweat from it), helps with sluggish gut motility, and I love the taste of it... :-)
Benadryl for muscle & nerve pain
Zofran (ondansetron) for nausea
Chicle-based chewing gum, to keep my teeth & gums happy during this extended time of not being able to eat. I noticed right away that the chicle based gum has significantly reduced the amount of bleeding I see when I brush my teeth (this has been a life-long issue for me and is not related to oral hygiene).
Electric Warming Throw - curling up under a warm blanket to ease the fatigue and aches sure feels good
Comedy tv/jokes/comics - laughter helps keep my spirits up
This HealingWell Lyme Support Forum - keeps me up to date on all things Lyme/coinfection related, provides encouragement when I see others successfully getting better, and gives me something to do that is constructive; I enjoy sharing what I've learned when it helps others
Family - very fortunately I have a great family who loves and supports me despite the lyme grumpies, stress and hassle of taking care of me
Faith - my faith helps keep my spirits up too, and is a big source of my hope that things will get better
-Razzle
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, Pancytopenia, chronic malabsorption/malnutrition, etc.; G-Tube; Currently TPN-dependent.
Meds:  Zofran, Pulmicort, Heparin (to flush PICC line), Claritin, Colloidal Silver (used topically), IV Milk Thistle, probiotics.


ttlittlestar
Regular Member


Date Joined Jul 2007
Total Posts : 296
   Posted 5/21/2009 6:29 PM (GMT -6)   
I vote for infrared sauna as well.

woodswalker
Regular Member


Date Joined Oct 2008
Total Posts : 99
   Posted 5/21/2009 6:49 PM (GMT -6)   
A good sense of humor!
9/28/08 - 11/8/08 100mg Doxy b.i.d. 42 days
11/5/08 - 11/20/08 Salt/C, grapefruit seed extract, COQ10, omega 3.
11/20/08 -> reduced Salt/C, omega 3, Acidolphilus and Saccharomyces, low carb, no wheat, no alcohol, no yeast, no caffeine, no sugar.
Ceftin 500mg, 2x per day; Plaquenil 200mg, 2x per day; Mepron 750mg, 2x per day; Zithromax 500mg, 1x per day.

3/26/09 - Doxy. 200mg 4x, Plaquennil 200mg 2X, Clarithromycin 500mg X2
Acidolphilus and Saccharomyces, anti-inflammatory herbs with cat's claw & omega 3.
Low carb, no wheat, no alcohol, no yeast, no caffeine, no sugar.


RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 5/21/2009 8:56 PM (GMT -6)   
my babies (dogs,cat, bird an fish ) they need me and love me i know.if i cant care for em who will. this thought keeps me going 99.95% of the time.
   RD
                                                                                                                 
 
still looking for answers
 


sojourner
Veteran Member


Date Joined Apr 2006
Total Posts : 1173
   Posted 5/22/2009 12:13 AM (GMT -6)   
Without a doubt, Faith and wisdom.

Both are profoundly intertwined; faith provides the solid root for wisdom’s growth and wisdom nourishes the soil in which our faith has grown.

Our tested faith through this long suffering constantly leads us to seek truth in what we read, listen to, discern and determine in our choices at each crossroads. It has guided us to the most brilliant physicians and necessary therapies; it has helped us to build a team, nourish the body, attack the pathogen, speak with wisdom, overcome pain and fear, fight with integrity, forgive (okay that's a work in progress) and face our need to depend on something greater than ourselves.

It has led us to the most precious relationships, life long trusted friendships and has given us the gift of extended family that we would not have ever experienced had it not been for all that we have gone through and now know. It has kept compassion and humility as close companions and allowed us the awesome privilege of meeting, encouraging and holding others up as they too journey this horrific disease. It has affirmed to us that what we are experiencing is real and not (as those who choose to live the lie suggest) some figment of our own making.

It has taught us to pray with gratitude for the little details that most would take for granted, pray with thanksgiving for the precious gift of a deep faith in the heart of our daughter b/c it has kept her grounded and so very strong in the midst of death defying long suffering and it has brought us through some very dark times along the way, only to realize that our faith is real ~ b/c we now have an undeniable hope alive in our hearts.

The practical decisions for day to day treatment and what to do when come as the bonus package within the dynamics of this hidden secret weapon called faith.

Gr8 thread!
Blessings, Sojourner
The best way to teach people is by telling a story. ~K.Blanchard
Keep telling your story and watch the tide turn!
God loves with a great love the man whose heart is bursting with a passion for the impossible. ~WmBooth
www.stylebyheatherrose.com

Post Edited (sojourner) : 5/22/2009 12:21:04 AM (GMT-6)


RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 5/22/2009 2:00 AM (GMT -6)   
Well said, amen
   RD
                                                                                                                 
 
still looking for answers
 


peacesoul
Veteran Member


Date Joined Jan 2007
Total Posts : 2446
   Posted 5/22/2009 3:41 AM (GMT -6)   
1- sleep
 
2- detoxing
 
3- changing my diet
 
4- exercise
 
5- trying to be positive
 
 

KeepHope
Regular Member


Date Joined Oct 2008
Total Posts : 222
   Posted 5/22/2009 4:41 PM (GMT -6)   
Neff Can you tell me about the 50 percent DMSO on your body after baths. What has this done for you and what is it supposed to help with??
THANKS

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 5/22/2009 6:14 PM (GMT -6)   
That warming throw blanket makes me want to snuggle and go to sleep just reading that post. I invested in one last year and have never regretted it. I feel like Lionel in Charlie Brown.
2003 symptoms started
2007 found an LLMD and was diagnosed with Lyme. Didn't start treatment.
2008 symptoms came back with a vengence.
2009 Diagnosed with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Biaxin 250mg to start,Mepron,Ultram,Thyro Complex 60mg,Probiotics and supplements

Post Edited (CajunGrl) : 5/23/2009 5:23:32 PM (GMT-6)


hopingToFindCure
Veteran Member


Date Joined Nov 2008
Total Posts : 759
   Posted 5/23/2009 1:56 PM (GMT -6)   
Low fat diet. Eat the rainbow!
Bit June 08.


minerals
Veteran Member


Date Joined Jul 2007
Total Posts : 943
   Posted 5/23/2009 6:55 PM (GMT -6)   
Staying away from my Primary Care Physician who knows nothing about Lyme or co-infections. As a matter of fact staying away from "ALL" doctors other than my LLMD.
DX. LYME  7 /03 -I believe I 've had it since 1985- 
oral doxi, amoxi 6 months. Have been bitten 2x since                  
Developed many chemical & food sensitivities& Allergies to many Suppliments
Swollen Burning tongue/lips
Hashimotos Thyroiditis
DX. Babsiosis 4/07 -Malerone 2 wks, Mepron & Azithromax 6 mos. 
Armour Thyroid
Probiotics are a MUST   
Almost died from 3 doses of Plaquanil 12/07
IV Rocephin began 12/4/07
Bactrim began 1/22/07
Stopped Rocephin 3/04/08
DX Micoplasma
Mepron, Azithrommax, Rafampin 5/29/08
Stopped Rifampin began Bactrim and zithro 6/2/08
stopped Mepron 7 22/08
switched from bactrim to levaquin and had bad reaction to levaquin
began Mepron again till Nov, then began Malerone
began Rifampin and Minocycline 9/08
modified cowden protocol 3/09
Outstare The Darkness--The Light Will Come!


georgiagirl
Veteran Member


Date Joined Oct 2007
Total Posts : 1172
   Posted 5/23/2009 8:39 PM (GMT -6)   
I'm with Dowa, I really love the sauna also.
Detoxing is a must!  

nefferdun
Veteran Member


Date Joined Feb 2008
Total Posts : 900
   Posted 5/24/2009 8:03 PM (GMT -6)   
KeepHope, I just rub it on my body after a hot bath. You should be very clean when you apply it because whatever is on your skin or mixed in the DMSO will go into your tissue with the DMSO. It is one of the most powerful antioxidants known. It is anti-inflammatory and it kills bacteria. I wish I had a stronger solution but this was all I could find locally. You can order it online at over 90% (other 10% is water).
I have a lot of dark marks on my skin about the size of peas. I thought I suddenly got age spots but then I saw them in Schaller's book on bartonella. They have faded to almost unnoticable now. Redness in a scar has turned white. I bought some hyaluronic acid in liquid form which is collagen. I generally take it orally for my eyes but I decided to mix some with the DMSO to put on my face. It helps firm my face and makes it very soft. One peculiar spot that was a wierd crusty little mole that Schaller says is bart - I cannot find anymore. But I still have tiny raised things that look like blood blisters.
When you use DMSO stronger (75% or more) it is a good pain killer. It has been used on horses for years when they are lame or their joints inflammed. When I tried mixing it with clove oil, it made the clove oil burn and turned my skin red. I have thought about mixing it with something else like Cumanda but haven't yet as I want a stronger solution.

KeepHope
Regular Member


Date Joined Oct 2008
Total Posts : 222
   Posted 5/24/2009 11:53 PM (GMT -6)   
Hi Nefferdun.
I really appreciate you explaining that. I actually was told to buy some to help absorb some things I was applying to my body so I do know the concept of how it works. But I bought it before really understanding it so I am not using it until I learn more. I have 99 percent oh. maybe 95. I have a lot of pain so i was going to try it for that too.
How odd. I have those brown spots too figuring they are age spots and a mole or two on my face that do not seem right. Weird stuff.
So your saying it is an anti bacterial too. ? Does it happen to be anit fungal, viral or protozoan too? i wonder? I wonder if it breaks down biofilm too.
I am on a new venture of trying to treat through my skin when i can. I think our Skin is forgotten as an organ to treat through. As well I am so sick of taking pills. uggh
Thanks again and any further info or reading materials links etc. i would appreciate.
THANKS again
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