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Posted 2/19/2009 5:35 AM (GMT -7)
I've been reading the boards a lot trying to gather as much information as I can so that I can properly support my wife. She is very hopeless and from reading many posts it hard to gather just how much progress anyone is making with their treatment.

I think it would be useful to gather some basic information to help assess or develop examples of what people have done and how much progress they have made. We are 1 year into treatment and it can get very discouraging when you are not getting the results you are expecting or hoped for.

Date Diagnosed:
How long had you had Lyme:
Treatment protocol to date:
Percent better:

Also it would be a good way to lay out different protocols that people are doing so you can compare and stay aware of all the options out there so that you can stay informed as much as possible.

Here is our story to date....

Date Diagnosed: Fall 2007

How long had you had Lyme: 10 years estimated

Treatment protocol to date:
Tindamax 500 mg 2x/day - Jan 08 to June 08
June08 - Dec 08 - Artemeisan(sp) and cats claw and other supplements
December 08 - Feb 09
Doxycycline 400mg 2x/day and Ceftin 500mg 2x/day
Right now just on Doxy.

My wife also does 2-3 Far-infared sauna treaments per week along with at least 1 salt bath. She also speed walks 9-12 miles per week (very determined). She also takes a whole host of other supplements, eats mostly organic and doesn't consumer very much sugar.


Percent better: 10% (maybe) it really depends on what day you ask this question.

Thanks for all your help and I look forward to your responses.

Jason in GA

Post Edited (jason915) : 2/19/2009 11:00:32 AM (GMT-7)

Posted 2/19/2009 9:48 AM (GMT -7)
There's not a whole lot of resource sharing amongst Lyme Disease patients unfortunately, so most of us are left to try to reinvent the wheel on our own. No just here but in a lot of online resources. Understandly people tend to be self-involved because they're ill. You'll see quite a lot of threads with 2 answers. Jason, I'd suggest you use the search function and narrow to the Lyme forum, since I know there is some good info here and your questions have been answered, but the search engine seems to be pretty crappy.  I've often searched for terms I know exist in this forum and it will return no results.  

I can tell you a few things I've personally confirmed about treatment though. (I'm leaving out all the stuff I'm not sure about or just hearsay) Niacin is a very potent "nutraceutical" agent against borrelia. Effects can be harsh though since it kills the infections so rapidly.  "no-flush niacin" is not effective, build up to 3000mg a day in divided doses. Freeze-dried or fresh garlic works. Only one of these two forms of it, none other, don't waste your money. Freeze-dried about 10,000mg a day, or fresh up to one full bulb a day. Chorella works very well for inflammation and maybe reduces ammonia levels in the body. Has worked great at eliminating my arthritic pain everytime it comes back. Must be taken on an empty stomach for best results.

Cat's Claw--my jury is still out on that one.  The clinical studies that showed efficacy for it's use in treating cancer and HIV were using far higher doses than anything I've heard suggested by marketers of Cat's Claw preparations, or reported by Lyme Disease patients. Those studies found efficacy for gram level dosages, not the 4 or 5 drops of tinctures you see reccommended by vendors. Yes tinctures are strong, but they are not equivilant to 20 grams of good quality bulk herb. (you can buy a one pound bulk for about $20) Small doses may help at first, but for continued improvement I suspect the amount needs to go up considerably. I'm currently making decoctions (tea basically) of bulk Cat's Claw powder, but it's too soon to say at this point if it is helping. I low boil 6 grams for 20 minutes along with 2 tsp's of lemon juice added to provide the acidity needed to fully liberate the alkaloids from the powder, and drink it on an empty stomach twice daily.  

 

Posted 2/19/2009 12:04 PM (GMT -7)
Is she taking probiotics? Because of all the abx. she has taken, she should be on a candida diet to kill yeast overgrowth in her system. The side effects from yeast can be awful so it's best to keep a check on that.
I am on the candida diet and I also take nystatin and diflucan occationally, even though I don't have any visable signs of candida, I know it's there. I've been on abx. for 1 yr. and 3 mos. I feel much worse when I go off the diet.
Just my .02.
Has she tried flagyl with the doxy? It really seems to help me. It's sepose to work on the cyst form that resists some abx.
Posted 2/19/2009 12:07 PM (GMT -7)
Thanks georgiagirl!

Yes she is taking lots of probiotics and difulcan. We have not tried the Flagyl with Doxy yet. Thanks for the advise. Have much improvement have you made in the 1 yr and 3 months?

Thanks!
Posted 2/19/2009 12:54 PM (GMT -7)
Hi jason915, I would like to say i'm about 85 percent. I was diagnose in 2005 was on abx for 2 years. In the begining i was useless. couldn't do anything but sleep..
Posted 2/19/2009 1:01 PM (GMT -7)

kendal122 said...
Hi jason915, I would like to say i'm about 85 percent. I was diagnose in 2005 was on abx for 2 years. In the begining i was useless. couldn't do anything but sleep..

Thanks Kendal122! 85 percent better is very good. Can you outline your treatment protocol of ABX? My wife feels like a train wreck probably 80% of the time. Did you experience much progress the first year or more so the 2nd year?

Thanks for all you input.

Post Edited (jason915) : 2/19/2009 1:28:00 PM (GMT-7)

Posted 2/19/2009 1:26 PM (GMT -7)

KeepHope said...
My comment would be .. My only way to tell how I am really doing is to stop abx and other treatments for a good 2 weeks or so.

Because while on treatment I have a lot of Herx reactions and I can not tell through that how I really am compared to how I was when I started. This makes it really difficult to figure out....

I hope that can help with some of your puzzle..

D

I know what you mean. With that being said, how will your Dr. gauge your progress and know when to stop treatment of abx?
Posted 2/19/2009 3:22 PM (GMT -7)
Date Diagnosed: June 2008

How long had you had Lyme: 9 months estimated

Treatment protocol to date:
Doxy 200 mg 2x/day - June 08 to Aug 08
Minocycline ?dosage Aug 08 - Dec 08
Raw Food Diet - 1 week Nov
Diflucan - Jan 08
Biaxin/Naltrexone - Feb/Mar 09 (currently)

I have cut way back on flour and sugar in my diet. And I exercise like a madman. I run 4-6 miles, 4- 6 times a week.

In 08, I was at 5-9 out of 10 on a pain scale. 10 is worst.
In 09, I'm now at 2-4 pain scale daily.
Percent better: 75% (maybe) it really depends on what day you ask this question.
Posted 2/19/2009 3:24 PM (GMT -7)
By the way, great post. I hope we get lots of responses to this...

Chief
Posted 2/19/2009 4:10 PM (GMT -7)
Date Diagnosed: 11/07 IgeneX positive IgM/CDC negative; 7/08 CDC positive IgM
How long had you had Lyme: unknown, but probably since 1978
Treatment protocol to date: homeopathy and Buhner's core Lyme herbal protocol were started (and stopped) in 2008, IV Cipro recently (for another infection, but it helps with Lyme too)
Percent better: 0%

I'm a unique case, however. I have not been able to swallow anything since June '08 (suspected to be caused by Lyme and possible Bartonella infection in my esophagus), so I am fed through a vein in my arm (via a PICC line) and the TPN (total parenteral nutrition) formula put through my PICC line contains a lot of sugar (which Lyme loves but is impossible to avoid with IV feeding). I'm trying to use a G-tube (feeding tube that goes directly through my abdomen into my stomach) but it has a severe infection around the tube site, making using the tube impossible right now...that's what the IV Cipro is for but it doesn't seem to be clearing up the infection (I've been on the Cipro for about a month so far). My doctor is looking into other antibiotics to try me on, but not many "play nice" with TPN. Lyme is a 4-letter word around here...LOL.

Take care,
Posted 2/20/2009 9:48 AM (GMT -7)
We need more on this.............
Posted 2/20/2009 11:41 AM (GMT -7)
We all got lyme in 04. But really now knowing more..think I got it in 03 when I lost a baby after getting sick in my garden. Then baby and I both got it. I treated the baby with heavy abx, amoxy, for 6 weeks. She got better. But then she got it again in 08. Did the same again, 1,200 amoxy for a 44 pounder. She herxed really badly for one day. With high fever of 106.5, then was fine. But her immune system is weak. She gets sick all of the time.
I think that I got lyme every summer. I was always covered in tiny ticks.Thought nothing of it. Baby was born with it.
I went down in one day in 04. Really ill.Was treated the day after with doxy and did it for 60 days.
Thought that was it. But no. Having a baby knocked me down. I was in and out of 30 some odd Dr.s after that. Chest pains that lead to passing out. So I had a heart Dr. and too many ekg's.
Very serious depression, started rigth after being bitten. Was treated for 5 years...to no avail.
Dementia. A nuero. dr. and many MRI's and nothing. Bells palsy. Arthritis and trouble walking. Terrible pain. Felt like car accident, some days.
Horrific migraines. Cronic fatique...and on and on.
Went to clinic in Az in Oct. started Ozone therapy and perioxide and supp. and did that for 6 weeks. Then took a month off for x-mas felt 100 % better and did not want to finish.
Got dragged back in Jan-Feb 7th after doing 6 weeks of 6 hour treatments 4 times a week. Ozone and EDTA together along with lymes being flushed twice a week, and of course a ton of supplements and other stuff. And most of the stuff was done through my port in my chest.
I am 100 % better. But I am only out of the clinic now for just a short while. I am tired of course. For now I am caring for a child and a large home. Back to life.
But I am very productive and feel good. Keeping my fingers crossed. The true test is a year without re lapse. And most of those did IV drugs or Herbs.
Posted 2/21/2009 4:39 AM (GMT -7)
Date Diagnosed: Oct 2006

How long had you had Lyme: possibly congenatially from birth (18 years), have been bitten twice, so could have had it 11 years or 5 years.

Treatment protocol to date:

Oct '06 to Jan '07---Doxy & Diflucan

Feb '07 to April '07---Doxy & Rifampin

May '07 to July '07---Doxy & Rifampin & Bicillin IM injections.  Injections got rid of most of my joint pain.

Aug '07---Never had a bad herx while taking antibiotics.  Stopped antibiotics.  Felt better off them.  But still had bad muscle pain and neuro symptoms.

Sept '07 to Sept '08---ALL natural treatment.  Various natural supplements/herbs.  Probiotics are a must (even off antibiotics).  Detox foot baths.
Oct '08 til current day---ALL natural treatment. Various natural supplements/herbs.  Probiotics are a must (even off antibiotics).  Natural tinctures for immune support and neurological support.Detox foot baths.  Daily use of a "Netty Pot" to clear out sinuses.  Chiro adjustments once every week. 

Percent better: 50%

Had food allergy/sensitivity blood test.  I went on a very restrictive diet.  Eat mostly organic food.  My current diet: no dairy, no eggs, no soy, no wheat, no oats (often contaminated w/wheat), no gluten, no refined sugar, very little corn.

Reduce sensory input/stimulus during specifc activities so my brain is not overloaded and avoid "blowing out" my brain curcuits.  Do this by wearing special colored blue "sunglasses" (diff. colors depending on individual's needs) while watching TV, using computer, reading.  Sometimes wear cotton ball in "weak" ear to reduce auditory input.

Current worst symptoms are chronic horrible insomnia, fatigue, lower back pain, neck and shoulder pain.  My brain fog is verrrrry slowly getting better.

Biggest thing is trying to keep a positive attitude and stay hopeful that life will get better.  My body will heal, eventually.  I will conquer this disease.

Posted 2/22/2009 1:17 PM (GMT -7)
Jason, I have had alot of improvement....although I seem to either be herxing or backslidding at the moment. I've been on IV rocephin for 6 mos. I think it's just time for a change in meds. My arm hurts from the picc line, I hope to get it out tomorrow and take a little break. I could also be herxing from a yeast die-off, i'm starving those little suckers big time! LOL!
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