Topic: What put my lyme into remission, this time???
stymielymie
Frequent Contributor (1K+ posts)
Member # 10044
posted
five weeks ago i had the tractor trailor truck feeling. one knee was unbearable pain, other hurting, so was with a cane for 4 weeks.
one day after eating something five weeks ago, i felt strange in the stomach, can't explain, just didn't feel right. also metallic taste in mouth.
no visual signs of candida on tongue like i usually get.i still felt strange.
so, since i have a pharmacy in my house, i started taking vfend, similar to diflucan.
took for 5 weeks, used lots of probiotics and also metronizole troches for mouth.
over the five weeks, along with plaquenil and biaxin xl, i started feeling better and better.
joint pain went away, except the damaged knee that had surgery 10 days ago. no afternoon naps, first time in 12 years. neuro cleared up, still can't read for long period but getting better each day
puzzles that would take me an hour to do, now can do in 5 minutes.
even my vision got clearer,no light sensitivity, no squinting.need less strong reading glasses
so am i cured, NO. but it sure feels great to be in remission. i can exercise again, which increase my endophin level, norepineprine and serotonin levels.
this is the first time since treatment started 7 years ago that everything feels clear, and mostly normal. not perfect but good for a lymie.
so in conclusion: maybe we should look into research with antifungal ,antimalaria meds for extended periods of use,for lyme treatment.
at this point the bb i have have curled up and asleep in my tissues. i think at this point in time this is the best we can expect with chronic lyme. i we can get the bloodstream clear,and the rest back to sleep, maybe we can lead a more productive life.
maybe we need to treat chronic lyme like HIV, put it to sleep and live productively until the bugs activate again.
maybe there is a mechanism that activates the bugs from cysts and l forms to bloodstream.
if we can stop the activation, like HIV then maybe we can live with the bacteria in our tissues.
i will be looking into research in these areas in the next sevral days or weeks and keep you guys informed.
docdave Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
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I went into remission after 7/8 yrs of orals and IV's and then off of everything and hit the yeast trail with yeast meds and supplements.
I was not told about yeast in the early yrs of my treatment - I had to learn it on my own and by accident in a way.
So here I was treating Lyme and only lyme for all that time until I made the choice to stop the meds and SEE what would happen - and it was then I placed myself in God's hands.
1 month later I was on diflucan - herxing like he!! or like death ( I mean it ) and then onto nysistain (sp) and soon the diet - which took me to remission of both in the end.
As I looked back and as I have read more and more I think it is very IMPORTANT to treat both lyme and yeast from the get go (together).
Maybe if I did treat both I wouldn't have had to be on meds for so long and could have become a real human being a long time ago.
This forum is great for finding out new things about all infections and co/infections.
Something else I learned over the last couple of months is that diflucan stays in the body for a certain amount of days - I never knew that - no one ever told me that, and maybe that's why I herxed like death when I first started it yrs ago - at 200 mg a day!
So Glad to hear you are feeling better and Now you enjoy your xmas seeing more clearly!
Lots of wishes
Posts: 374 | From NJ | Registered: Aug 2006
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Lymelighter
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posted
Doc, does this have anything to do with your weekend with the Donald & Miss USA? Posts: 1010 | From Mars | Registered: Feb 2004
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posted
That is great news that you are feeling better. I am rooting for you and I hope it continues. I think that you are onto something with your treatment regimen.
Posts: 156 | From MA | Registered: Jul 2003
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stymielymie
Frequent Contributor (1K+ posts)
Member # 10044
posted
Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Really Cavey...
Hey Doc....don't bogarde that stuff......my friend.....
Pass it over to me!......LOL
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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Thank YOU
Posts: 374 | From NJ | Registered: Aug 2006
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MagicAcorn
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posted
My personal opinion is that it is because he is single and happy again.
-------------------- Posts: 1279 | From In hiding | Registered: Feb 2006
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
I think you may have downregulated TNF alpha and IL1 Beta
OR
Knocked out coinfections which would send your immune system flaring way up.
It's bad enough it has to try to fight Bb, add other pathogens and it is far too stressed.
Yes, it does appear nonstop abx. might indeed be causing Bb to "curl up" and just wait...
It does appear only the cell wall and cell wall deficient forms cause mischief as they "feed" on us and their cell walls trigger our immune system response.
I suspect, but can't prove, the cell wall deficient forms are the "youngsters" who have not formed their lipoprotein outer cell walls.
I suspect, Mother Nature helps out (to a degree) when barometric pressure changes happen as well as with a full moon = so long cell wall deficient pathogens. We know osmotic pressure and ultrasound can destroy cell wall deficient pathogens (step #2 in how to lyse a gram neg. pathogen).
The key looks to be to stop Bb from making its cell wall which looks to be...cholesterol...lipoproteins.
We can't be without cholesterol ourselves since all of OUR cell walls as well as our myelin sheath (insulation around the nerves) need it. But we can stop VLDL release from the liver, shutting off that way.
Which is WHY we need to INactivate HMG CoA reductase and then we need to get our cholesterol nutrients from the best foods...UNsaturated fats with emphasis on the Omega 3s too.
Why do you think the "push" is on to get tryglycerides and saturated fats OUT OF OUR DIETS?
They aren't good.
We need the fats that are MISSING hydrogen (Crisco, for example, is full of hydrogen. It is already "saturated". It prolongs the shelf life.)
Ancora Imparo!
[ 22. December 2006, 03:15 PM: Message edited by: Marnie ]
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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stymielymie
Frequent Contributor (1K+ posts)
Member # 10044
posted
yes over the last 7 years i have been on many cocktails orals and iv's. i did have 1 strech of remission for 2 years.
i have taken vfend before but stopped for acute infection only. never 6-7 weeks.
also the plaquenil is fairly new 6 months but had no effect alone with biaxin. the clearing up did not start until the vfend.
i have also taken antivirals over the past 7 years on and off which have prevented any dormant virus eruption.
one thing i think really helps put me over the top is exercise. i think this is more important than drugs, but many can't exercise without drugs, or at all.
exercise improves your immune system and kickstarts it into gear. the chemicals in the brain increase causing more signals to the white blood ceels and t cells.
marnie, could you break your info into english, i understand it, but many will not and it is good info, just too technical.
docdave
Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Yeah docdave...I'll break Marnie down for ya....
Ya did something right for a change! OR Your constant nagging drove the chetes crazy and they closed up shop in their little cystic shells...waiting for you to THINK you're cured!
hope not....
AND ACORN....IS Dave HAppy or the OBVIOUSLY sexually arrosed SQUIRREL yu talkin bout...??
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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MagicAcorn
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Member # 8786
posted
Zippity Doo Da Zman that is the little guy's zipper to his caped crusader outfit! Can't a little fella rise above the leave litter he was born into and aspire higher?
Since my little guy still needs a name and you mentioned his little unmentionables in another post I've decided to call call him Mr. Tweeter instead of Nuts.
-------------------- Posts: 1279 | From In hiding | Registered: Feb 2006
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Aniek
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Member # 5374
posted
I thought the squirrel ate Superman...
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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I am very interested in discussing your stomach ache and metallic-taste symptoms of when this flare-up hit you. I had this happen recently, a week ago.
It was also accompanied by an overwhelming headache that lasted all day...and I can only describe as (also) "metallic". The headache lasted only one day, but the symptoms that I had previously seem to be returning since this happened.
When I had my initial "train wreck" episode 4 years ago (the start of my Lyme saga) this metallic headache and flu-like symptoms/body pain/aches lasted a full week.
A trip to the ER and Doxy help pull me to an acceptable level, but throughout the 4 yrs of pulsing treatment (Oral) I found that the best combo was Zith and Mepron...an anti-malarial. All of my symptoms go away with this.
Since last week, I will intermittantly have the stomach ache...usually when empty, but NOT the normal hunger pain...It is tough to describe, and it does seem to go away when I eat. The metallic headache usually accompanies it, but is less severe than what happen a week ago.
I am convinced that it is not due to hunger itself...its a totally different feel, and doesn't always happen when I'm hungry.
I've been in remission since this summer, but something seems to have kicked it off again.
Have you been able to trace what might cause your stomach/metallic taste symptoms?
Anyone else out there have anything similar?
Thx!
B
-------------------- Bill
**Question everything...it may save your life!!!** Posts: 80 | From ATLantic Seaboard | Registered: Aug 2005
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Jellybelly
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Member # 7142
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Dave, glad you are feeling so much better. It's nice to feel good, isn't it? I have given some thought to the fungus amungus too.
Think everyone knows that I have a real rough time with ABX. Joints get hot and inflammed and eyes burn real bad. I have always thought herx.
Then this last summer after 5 weeks of very, very low dose Mino, I ended up with horrible reflux, and chest pain. Thought it was my heart sometimes. Tried some over the counter reflux stuff and it helped not at all. Then I was put on the little purple pill, Nexium. It helped for a little while and then things just got worse again.
A few things about my reflux symptoms made me wonder if the reflux could possibly be yeast related. So I filled the diflucan perscription I had and went hard core on to the yeast diet. I had to start very slow as this stuff makes me herx in almost the exact way as the ABX. Joints get hot and swollen and eyes burn. Starting at 50 mgs. seemed to work fine, discomfort was tolerable.
With in about a week, the chest pain and reflux was nearly gone. If I blew the yeast diet at all, the symptoms came back. Eventually the redness and swelling in my joints would subside along with the eyes burning, but then when I would increase the dose, all that would come back for awhile, then subside, until I worked up to 200 mgs, where I am now.
Now what I am wondering is......all of this herxing that I thought I was having while on ABX.....is it possible that it was actually an explosion of yeast because of the ABX???
I can now take 200 mgs. of Diflucan and after being on that dose for about 5 days, the joint swelling is only showing up by late in the evening after being on my feet all day. The burning in my eyes is still there on and off, but one of the things that I had been thinking before I started the Diflucan was that maybe I had a sinus infection that was actually yeast and it was draining down my throat, and exacerbating the reflux issue.
I'm feeling really good right now, and I would say that I may have even passed the 85-90% remission mark where I have seemed to be for quite some time.
If I have yeast in my sinuses, it's been there for at least 15 years, and may be pretty intrenched, so it may take more then a few months to clear it, and I may need to try some other things to clear it out. When on diflucan my sinuses drain a lot.
So I'm just wondering how much yeast is effecting us without ouor even being aware. I didn't have ANY of the obvious symptoms at all that would point to yeast as being a major issue.
Posts: 1251 | From california | Registered: Apr 2005
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Lymelighter
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Doc, now that you're a big swinger...when you have that Lyme soiree on your Hatteras?
Posts: 1010 | From Mars | Registered: Feb 2004
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trueblue
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Member # 7348
posted
quote:Originally posted by Aniek: I thought the squirrel ate Superman...
I can tell you one thing I remember. Although, I have no medical or any other scientific proof, just my experience.
In the old days when Lyme treatment worked on me... I was always on an anti-fungal at the same time as ABX. Usually a low dose of Nizoral.
Since they decided Nizoral 'might' interact with Zith I have not been given it along with ABX, maybe 7 or 8 years. No improvement on any meds.
I've also not been able to tolerate treament or seen any improvement without taking it concurrently with ABX. On it's own it does take care of the fungus, though.
Just rambling because this reminded me. Thanks, maybe I need to talk to the LLMD about an anti-fungal, maybe something less liver toxic then Nizoral.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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Vermont_Lymie
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Member # 9780
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Congratulations on your remission dave - may it last so long that you forget what it was like to have lyme disease!
what is a metronizole troches ? Sounds nasty.
Yes, please post all available thoughts, research and synthesis on lymenet, mail some of that biaxin and plaquenil up to NY, and keep writing those letters to the editors.
When my brain recovers from its latest solar flare, I'm gonna to do the same.
Posts: 2557 | From home | Registered: Aug 2006
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