Topic: please sign in if you have gotten lyme under control with only herbs-no abx
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
name -number -or just an x...i just want to have an idea how many. i still only know of one that dr b helped-and she had to really change her lifestyle for it to help...maybe with the new herbal protocols things are different...so check in!
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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klutzo
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posted
How do you define "under control"? My answer would depend upon your definition.
I was mis-diagnosed and untreated for 21 yrs. before starting herbal tx. I have been on herbals only for 3 years and have never taken ABX for Lyme, as I am allergic.
I am about 60% better,and the only reason I said 60% rather than 85%, is that my brain is taking a lot longer than my body to improve. I have the energy of a normal person now, but my brain still gets so easily over-stimulated that it causes problems that prohibit my returning to work.
The fact that I had a serious brain injury before Lyme may have something to do with it, and I have no way to tell if my brain damage is permanent, or how much, if any, of my residual brain problems are caused by Lyme.
I do know that anyone trying to take my Samento away would be looking down the barrel of my gun! I also needed help with the other effects of the disease, and consider Mg Citrate, D-Ribose, DHEA, B Complex, Armour Thyroid, and digestive enzymes to be essential to my improvement.
Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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hardynaka
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posted
Hi, me. But for how long, no one knows. I took very little abx (all days together don't make a month, certainly). Only Doxy, amoxy and Riamet.
I'm not cured, but I feel I'm getting better.
Selma
Posts: 1086 | From Switzerland | Registered: Oct 2005
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JimBoB
Unregistered
posted
JWF needs to sign in here.
I personally got MUCH better on herbs only. But then I made the mistake of taking almost two months of abx and had a big setback this past winter. I am much, much better again now on just the herbs only. And will keep on with them until I feel I am cured.
lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Hey there Jimbob...
why don't you tell her how many different pills,supplements etc you take a day and how much it costs you...
I'm glad herbs alone work for some...skeptical tho I may be...cuz the numbers just don't justify the regimen...
abx and herb supplements I think are a better way to go...
I did try just herbs alone and although I did get a herx and felt somewhat better at times...I never got to the levels of relief I have attained without IV abx's...somewhere along the way...
Good luck...........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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luvs2ride
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Member # 8090
posted
Well, I'm not cured yet. But here is my progress so far.
When I was first diagnosed with chronic lyme last August 05, (I originally was treated for lyme 10 yrs ago with 6 mths of rotating abx)my symptoms were: migraines, shortterm memory loss, mental confusion, hearing loss, stiff neck issues, and some minor migrating joint pain.
The lyme literate medical doctor I was referred to does not believe abx are the answer to chronic illness of any kind. He is a certified homeopath and put me on 13 different remedies.
Within weeks, ALL SYMPTOMS DISAPPEARED except joint pain which escalated. None of the symptoms have returned. NONE! Additionally, one of the remedies deals with emotions and I felt so good on this regimin (excepting the excrutiating joint pain). It also felt good mentally to know this medicine had no harmful side effects.
I kept riding out the joint pain thinking it was die-off herx, but in Jan 06 I was diagnosed with Rheum. Arthritis. This really frightened me even though there is lots of evidence it is caused by Lyme. Still, joint damage is not reversible.
So I gave up the homeopathy and pursued treatment for RA. I rejected the methotrexate the rheumy wanted to use because it is an immunosuppressant drug which isn't good with a bacterial infection.
I quickly found an antibiotic protocol for RA which assumes a bacterial cause and uses very low dose (safe!) minocycline. I have been taking this since 2/23/06.
I also altered my diet significantly based upon a Leaky Gut Syndrome cause to RA and to date, this change has had the most dramatic results.
I pursued the root canal connection which led me to another medical doctor who practices integrative medicine (though he will not touch lyme). Through testing, he has confirmed Leaky gut, heavy metal toxicity and systemic yeast.
We are currently working to correct these conditions and it may take as long as a year to clear this all up.
Every treatment I pursue (all natural) for lyme or yeast gives me such tremendous joint pain, I can't tolerate it. Dr is building up my elimination systems as tests showed they are stressed and depleted. This also was true of my adrenals and I was very low on DHEA.
Heavy metal toxicity can cause these deficencies. Since joint pain is my only symptom remaining and tests show I have all these other things wrong with me, any of which can lead to joint pain, I am very hopeful I can reach full recovery.
Except for the minocycline (100 mg MWF)all my treatment to date has been natural and has had very good effect.
Even the joint pain which is still very much with me, has reduced to the point I am fully functional most days.
I have a lot of hope.
I have nothing against abx, but I know most traditional doctors would never have pursued diet, heavy metal toxicity, infected teeth, systemic yeast. If I had only taken abx, I do not believe I would have achieved the level of recovery I have to date as the abx would have done nothing for the underlying conditions and would have excacerbated the yeast at the very least.
I believe Lyme is the reason why I developed these other conditions. But I highly suspect the homeopathy knocked the lyme out rather quickly which then brought the other conditions to the forefront.
I will not know for sure about the current lyme status until I have eliminated these other contributors and see how I stand then. But if lyme were still at work, would I not have had a relapse of the migraines, stiff neck, hearing loss, mental confusion or at least one of them?
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
thank you for the answers
tony-i've been meaning to ask you for awhile...do i know you from a group in nys quite a few yrs ago? di you speak or something and then you were going to move? i started this thread to see how many really are getting better on just herbs...i took abx 3 yrs and think most need to...but there are some who are allergic and i wondered about them-i also wasted a yr on herbs and alt treatments and i know i am worse because of that
there are some important things that everyone can do to make the problems of abx less-but some really are allergic
luvs2ride-is your llmd involved with ilads? i don't know enought about alt stuff to comment with what is happeneing with you-i tried homeo pathic and a bunchh of other stuff that didn't help me. abx did,. but after abx i use a lot of herbs for support and to maintain. and i do have some residual gi stuff going on.
do you understand about the 2 genes that if you have thema nd you get lym e you will have continual problems? this is not related to all your alt tx...only a relationship between the gene and borrelia
i'm too foggy to explain-but if you search gene it will probably come up...good luck
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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JimBoB
Unregistered
posted
Hmmmmmmmmmmm......, IF you are too foggy to explain, it sounds like you have the Lyme bug pretty bad yet, huh?
I have almost no brain fog anymore. A little forgetfulness at times, but not the brain fog I had last year. That was terrible.
As far as the COST of the herbs I take, it is quite low compared to abx. I understand some of the abx are $800 a bottle?!??!!
I know Cipro was very expensive too.
Mepron super expensive?
I fill my own capsules so the cost of herbs is about one fifth that of already filled in bottles.
Some herbs are more expensive than others. I buy my herbs by the pound except for Hu Zhang which I can only get in 100 gram bottles. (3.5 oz.).
Some herbs are about $7 a pound, others can be $36 to $73 a pound. And everything else in between the lowest and next highest.
I was taking up to 89 pills a day, but now am down to about 70 pills a day.
quote:Originally posted by lpkayak: name -number -or just an x...i just want to have an idea how many. i still only know of one that dr b helped-and she had to really change her lifestyle for it to help...maybe with the new herbal protocols things are different...so check in!
YES, the NEW herbal protocols ARE different. I feel like a real person again these days. IF I had to feel like I did when I was on the abx back a few months ago, I don't know IF I could stand to live.
It was horrible.
I HOPE I never have to take abx again. I don't say I WON'T ever, but say I hope I don't have to, ever.
Time will tell, I am sure. But I like the way it is going NOW.
It is good to feel somewhat normal again after all these years.
The FIRST person to diagnos me with lyme was a nateropath. I think he practises biokinesiology??? Anyways after i gave him a saliva sample he HE TOLD ME I HAD LYME DISEASE AND A PARASITE. This was MONTHS before i sent in blood work to igenex. He gave me a mixture of herbs to take in powder form. I ate 1/8 of a teaspoon 3 times a day and i felt almost 60 percent better after 4-5 months.
THis was during my University Campus life where i would occasionally drink heavily. And I still saw huge improvements. I relapsed a few times and felt horrible symptoms, but after a week i was back on the road to feeling well. My anxiety+ depression+ no sex drive all IMPROVED. IS IT POSSIBLE TO FEEL 60% BETTER FROM LYME WITHOUT TAKING ANTIBIOTICS? I'm asking this because if this is not possible than his herbs were doing something.
He said that this wuold take at least 1-2 years to return to my original self.
Its been almost 1.5 months since stopping his herbs and beginnig mepron+zinth treatment and i'm beginning to see some of my anxiety+depression return. I plan on going on conventional medicine for a yaer then switching back to his herbs when i feel that i've destroyed as much of the lyme bacteria and babs as possible.
Posts: 170 | From Vancouver | Registered: Apr 2006
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lymie tony z
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Nope Ipkayak...that was'nt me...
Ok folks...from what I have read on this post...NO one has used herbs exclusively to become "cured"
Somewhere along the line you've all had some abx treatment...which is contrary to the question asked of this post...
be that as it may...I believe the best treatment is a combination of the two regimens for optimal efficacy...
let's not forget that for all our similar symptoms we all have different bodies and possibly much different strains of this disease and coinfections... Not to mention other contributing pathogens in our individual systems, different genes...etc
Consensus......Do whatever helps you feel better.......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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Truthfinder
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posted
You are forgetting Klutzo, zman. She is allergic to abx so has not taken them.
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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luvs2ride
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Member # 8090
posted
Tony Z
I have not used any abx this go round for Lyme.
The 100 mg MWF of minocycline is for RA induced mycoplasmas and the jury is not in yet as to whether it is working. Too low a dose for Lyme.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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posted
I think abx has a place in the treatment of Lyme, but not as a continous treatment.
The way I view abx is as an instant way of making your body an unhappy home for Lyme.
We also know that Lyme can hide from abx. And we know that long term use of abx is generally not good for your body and encourages other bacteria to become resistant to the abx.
So in my view, abx should be short term only.
Having said this, I was on abx continously for almost 2 y (oral only.) But I became increasingly suspectful of them not doing anything over the last year or so.
The general solution, IMO, is to do everything in your power to make your body an unhappy home for Lyme.
And you can do that all by yourself.
Abx is sort of an instant fix to accomplish the above. But by no means is this the only thing you need to do. You probably need to basically change the way you live and breath every day if you wanna get cured.
Here's what I do:
Get sufficient quality sleep - move out of the house if you have to - or threaten to do so.
Eat low carb foods.
Generally eat healthy foods - grains, nuts, goat products, berries, cheeses, hot spicy foods, salty foods, etc.
Drink purposeful teas - ginger, sage, licorice - and they help to keep you warm too.
Attend to my hormone levels.
Continously detoxify yourself.
Drink plenty of good water.
Take the proper supplements - mag, zinc, vit-c, vit-b, cats claw, reveratrol, etc.
Take probiotics.
Dress warmly.
Do everything I can to raise body temp.
Stay the hell away from sugary foods.
Have a positive purposeful mindset. Don't be the disease. This is war! Fight it and win it! It won't be quick. Be in it for the long haul.
Read, read and read more about Lyme. Don't assume you Dr, even if an LLMD, will be of much help. It's team work, but 99% up to you to get better. This is a hard one for most to swallow!
...and there's probably more.
Michael
-------------------- I'm not an MD. The above is IMO and in my experience as well as from health related books.
I've had symptoms consistent with neurological Lyme disease since 1986. Was diagnosed with Lyme in 2004. Am feeling better now than ever before. Posts: 702 | From NY | Registered: Jul 2004
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posted
My guess is that a lot of the people who are doing only herbs are not posting here.
In my opinion, I think the herbs in the Healing Lyme book plus a few others could probably work if Lyme and coinfections were caught early enough -- don't know if they will work exclusively for long-term undiagnosed infections.
Hubby started with the herbal route -- the first book by Dr J in Kansas -- Surviving Lyme Disease Using Alternative Medicine.
Ended up in the ER and Hospital 4 times within a month I think (one hospitalization was a psych admit)-- last time had elevated protein in the CSF and was unconscious for 15 hours one day. Had had no antibiotics at that point. Seizures also started after herbal treatment. Was doing COQ10, and some detox things like saunas and ION foot baths.
My point is that some people need to be supervised by a doc (not a chiropractor) even if they are only taking herbs. We didn't know much about Lyme at the time and the chiropractor did not explain enough about herxheimer reactions and did not know how to mitigate them in hubby.
Hubby has similar reactions to antibiotics, but now we know what to expect and stop or reduce treatment when things get out of control. Plus we do have some meds and additional supplements to mitigate reactions.
Don't be scared of herbs, but remember that some of them can be very powerful and treat them with respect.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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JimBoB
Unregistered
posted
quote:Originally posted by seibertneurolyme: My guess is that a lot of the people who are doing only herbs are not posting here.
In my opinion, I think the herbs in the Healing Lyme book plus a few others could probably work if Lyme and coinfections were caught early enough -- don't know if they will work exclusively for long-term undiagnosed infections.
Bea Seibert
IMHO the Herbs in the Healing Lyme book will not only work on early Lyme but also and more importantly on late Lyme. As a matter of fact, that is WHY the book was written. Because many people do NOT get cured on abx. And the herbs HELP THEM to get rid of this thing.
I know I for one feel much better with the herbs, than I did with the herbs AND abx together. But like it has been said many times, we ARE all different.
Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
Oh my gosh! You swallow 70-90 pills a day? How on earth do you manage and decide what pills to take when? That amazes me.....
Posts: 1366 | From Southeast | Registered: Sep 2005
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JimBoB
Unregistered
posted
I WAS taking 89 pills a day when I was at my maximum protocol. Now that my Lyme is better, I am down to 70 and of course that will go down more later.
IT is quite easy to know WHAT to take. I take them ALL three times a day WITH my meals. So not difficult at all. Really pretty simple.
I eat my main meal. Then take my capsules with my C-salts of which I have mixed in Tintures of Periwinkle and Red Root, and sometimes Oil of Oregano. Then I have some dessert.
WHEN I was taking abx too, I took that about two hours before the meal, as I had to take Acidophilus then too. And you don't want to take Acidophilus and abx together.
Very simple now without any abx.
As far as WHAT protocol to take I use mainly the protocols from the healing Lyme book by Buhner. He tells you how many to take. I do take others also, but learned that by more reading and studying and picked those that help with my asthma and arthritis.
Best part is, these herbs do not ruin your stomach like abx does.
posted
lp kayack no abx have had lyme for about 11 months -just tested + at Igenex in May
I have been on herbs for 9 months - able to work now and have less neuro symptoms - the brain is functioning
I still have the muscle aches and some bad days I would say i am back about 65 %
mags
Posts: 259 | From California | Registered: Mar 2006
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lymie tony z
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posted
No I did'nt forget Klutzo...she said she was "treated for lyme in earlier years"...if you ask her you'll probably find out whe was given abx at some point...
How else would she know she's allergic?
70 pills a day made up yourself..."you're a better man than me, gunga jim bob"...
most of us with chronic lyme could'nt sit long enough to fill all those capsules...OR remember when and which to take...
the word preposterous comes to mind...give me a break already........
and how do you know these "herbs" are'nt sawdust and crap? or are doing you more harm than good in the long run? You simply don't know for sure...
somewhere on here I see a troll pattern debunking antibiotic use long term...
There is NO evidence that long term open ended antibiotic use is as harmful to the body as lyme disease gone untreated.....
You all have the right to do whatever you wish....I sincerely wish all here good health...but some of the stuff on this thread is absurd...
It hurts the credability of this board... Good luck all............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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Truthfinder
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Member # 8512
posted
Ah, Tony...... it is always nice to see others who have trouble understanding what they read...
Here's what Klutzo said:
"I was mis-diagnosed and untreated for 21 yrs. before starting herbal tx. I have been on herbals only for 3 years and have never taken ABX for Lyme , as I am allergic."
Most of us have been on abx for SOMETHING long before we ever knew we had Lyme....
Anyway, although none have posted on this thread yet, we can't discount all of those people doing the salt/ Vitamin C protocol who tend to hang out over at Lyme Srategies on the Yahoo Groups rather than at LymeNet. The salt/C thing is still a relatively new treatment, but I know there are people doing it who are making significant headway.
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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luvs2ride
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posted
tony z,
I believe it is you who is sounding absurd.
You do not want to believe in anything but man-made manufactured chemicals. It doesn't matter that many people take antibiotics without getting well. You just gloss over that fact, but you ridicule and scream like a banshee about the foolishness of medicine that has existed on record for 3,000 years.
Antibiotics have their pros and cons as do more traditional medicines like herbs and homeopathy.
Everyone should have the right to choose which course they want to take. This means mainstream doctors should be trained in both methods and should ALWAYS give the patient information so the patient can make an informed choice.
Research provided by our tax dollars (NIH) should be conducted on safe, natural alternatives. Yes, the herbal products should be monitored by the FDA to be sure the ingredients are as claimed.
BTW, my homeopathic remedies were FDA regulated and administered by an MD.
A doctor at the 2005 Lyme Symposium in Reston, VA who uses integrative care stated that "he always leans towards that which is SAFE first". I like this approach.
I should be allowed this choice. If you prefer the more aggressive approach, you should have that choice.
When you accuse us who use alternative care as being trolls, you have gone too far over the line. Your ridicule of JimBob and Klutzo is also out of line. Of course a person has to take antibiotics in order to know if they are allergic to them. I know from personal experience that anyone at any time can develop an allergy to an antibiotic.
You owe many on this board an apology.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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klutzo
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posted
Tony, I have had zero ABX for Lyme.
I found out I was allergic by having skin tests in an allergists office, due to a previous reaction to ampicillin, which was given to me for PID in 1970, and a reaction to tetracycline given me for a UTI in 1983.
I got Lyme in 1986. Because of those previous reactions, I would not try any ABX without tests, and I am glad I didn't. The allergist tested me for all ABX and found me highly allergic to all but the fluroquinolones, which as you know, are not effective alone.
Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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lpkayak
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posted
well-thank you to all for the input.
i'll bring this up and then count how many did well w/o abx in a few days. lp
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
Infected since several years I'm on herbal treatment for three months or a bit more.
Let's say 75% improvement up to now.
No ABX in the last 10 years except 5 or 7 days after a dental treatment four years ago.
Posts: 71 | From germany | Registered: Mar 2006
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JimBoB
Unregistered
posted
Tony, tony, tony, me thinks YOU are the one bordering on being a troll. A troll of our freedoms.
Freedom to chose our TYPE of protocol.
Freedom to Speak about it to others.
Freedom to HELP others with OUR experiences without ridicule or opression.
Freedom to Chose medicines that GOD made for us, instead of the crap man tries to dream up.
Freedom to ask you to leave IF you don't like what you are reading here for those of us that have in good faith chosen a "natural" way of taking care of our bodies.
I could go on and on, but I won't. Hopefully even YOU can get the drift of what I am saying, AND what a few up above have said in answer to your negative comments.
As far as being absurd; how about the $200,000 a person out east spent on abx and doctors and still didn't get well?
I did not START filling my own capsules, I bought them like a lot of people in the beginning, and started feeling better almost immediately, and when the brain fog lifted after a week or so, and my vision came back, then I was able to start saving a bunch of money by filling my own capsules and making my own tincture.
I buy ALL my herbs from two places now, wholesale, from outfits that I know do their best to handle only the highest quality herbs at a reasonable price because of high volume sales.
How do YOU know what goes into the man made artificial antibiotics that you and others take?
You DON'T.
NO one does. How many of the college kid sweepers dump their sweepings into the vats? It is the same with big business prepared foods. I have first hand confessions of one of those "college kids" and what they did.
Many things are absurd to the uninformed, the ignorant, the conformists.
Like my signature says:
"The person who says it cannot be done, should not interrupt the one doing it".
posted
PS: I NEVER said I take 70 different herbs at a time. I am taking 70 capsules of herbs.
DO you think I am a robot or a lower animal that can't THINK?
Puleezzzzzz!
What is so hard about taking 3 or this or 1 of that, or 3 of the other?
I have about 10 0r 11 bottles with the capsules in them, all nicely marked and in original herb for herb bottles, all in a row, with the number to take on the top of the cap of each one. SIMPLE, eh? Bet you wished YOU had thought of that, eh?
The GOOD thing is "I" get to decide HOW MANY of each pill I take a day. After about 4 months at maximum recommended dosage, I felt good enough to decide I wanted to cut down some and see how it went. It is going good, so in another month or so, I will probably cut down some more to maybe 50 pills a day, etc., etc.. IF I feel like I am relapsing, then all I have to do is add more back in to MY regimen.
Again, very simple, cost effective AND it IS working.
posted
1 month low dose doxy to start; 2 years 2 months herbs only since then
Did not test negative with IgeneX until aboout 2 years on herbs. Only symptom now is some fatigue.
Blue Skies........John
Posts: 134 | From North Carolina | Registered: Sep 2004
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JimBoB
Unregistered
posted
quote:Originally posted by lymie tony z:
most of us with chronic lyme could'nt sit long enough to fill all those capsules...OR remember when and which to take...
the word preposterous comes to mind...give me a break already........
and how do you know these "herbs" are'nt sawdust and crap? or are doing you more harm than good in the long run? You simply don't know for sure...
Snip . . . .
You all have the right to do whatever you wish....I sincerely wish all here good health...but some of the stuff on this thread is absurd...
It hurts the credability of this board... Good luck all............zman
Thanks for your positive sentence at the end anyway.
I see very little on this thread that "hurts . . . this board".
I also didn't see much that was absurd on this thread, except for maybe your tantrum.
SOME of the herbs ARE sawdust, so to speak. SOME come from trees. BUT aren't really sawn, but rather "ground up".
I buy, and I hope others do also, those that I feel are of the highest quality, cleaned properly, and many are vacuum sealed with NO "crap" like those you buy already done. ANd like most abx have in them.
Also, I feel very sorry for you, that you are STILL in such bad shape after ALL your abx that you can't sit down and do simple menial tasks like filling capsules with "dust", with the aid of a very simple manual machine.
klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
Hey everyone,
Even though my post was attacked too,I feel maybe we are being a bit unkind here. This could be a manifestation of neurolyme. Maybe Lyme rages are the reason for Tony's attacks....I don't know.
I used to dislike someone on another Board I go to, because she attacked people constantly for no real reason just like this, so much so, that most people stopped posting. But, once she had her port removed, she became a kind and helpful person, and I ended up liking her a lot. She then saw that she had been raging almost constantly, and apologized.
Many of us have been in that kind of mood.....I stay off the computer when it happens to me, which is much more rarely now, thanks to my tx.
I am trying to have a little compassion, at least until proven otherwise. Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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lymie tony z
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Member # 5130
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Hey there all you folks I guess you need to read a little better and understand...
This is typical of trolls when someone utilizes there freedom of objective opinion...
They accuse them of "attacking" folks and calling them names...I did nothing of the kind...
I expressed my objective opinion which I have the freedom to excercise...I threw NO tantrum as I was accused.
Perhaps the use of trolls to those who are makes them overly sensitive and feel they must strike back...which is obvious to those who are'nt.
A lot of you said you don't take abx for lyme disease...but that does'nt really matter now does it...
You have been or are using abx for some other symptom...the lyme does'nt really care why you're taking it or have taken it...it will give you a herxeimer reaction anyway...
or don't you get that... Klutzo did take ampicillin...as she stated...she had a reaction...I suspect she'sconfusing the herx with an allergic reaction and the allergin tests may also illicit a herx like reaction.
Most people are not allergic to all antibiotics because they are in different families. I am not also saying it's impossible either.
Long before I knew I had lyme I had bad reactions to antibiotics and I thought cuz they made me feel fatigued and achey I was having an allergic reaction of some kind.
when I told the doctors about it(back in the seventies) all they said was "hmmm that's interesting".
I also had a reaction to the hepatitis vaccine after all three shots....again I got Hmmmm that should'nt be happening....but it did just the same.
Now I know it was a herxeimer reaction even though I was'nt taking the abx for lyme cuz no one knew lyme existed yet!
Thanks for the pseudo understanding Klutzo...but I REALLY don't suffer from rage...but I can denote a cold shoulder from you on several other occasions.
I am also adept at recognizing baloney when I read it...and I suspect it sometimes
and have deduced that some of the off topic folks or steere folks put junk on the medical board just so it can be referenced by the "powers that be that are against our scientific approach to this disease"
for purposes of discrediting this forum...like those from the sci-fi board.
I never said abx alone is the only answer...if you'll read my previous post, I to used both abx and herbs to gain some relief from my symptoms...
Dr B's protocol...however there is a cost problem involved with most of we lymies as our incomes have been severly depleted due to our illness...
and if we have prescription insurance then we would naturally choose that route... which is also most in line with Dr Fallon's research on prolonged utilization of antibiotics...
I still do supplement with some herbs as I feel they help me...BUT I don't believe they will cure me anymore than abx will at this point in my fight with this disease...
None of you have been "cured" by using herbs alone...as you state that when you stop your protocol you feel wrotten until you return.
I know this thread just asked if we can keep it under control with herbs alone...and some of you have said you can...but I'm interested in eradicating this from my system. So I don't relapse whenever I stop fighting it with whatever I choose to fight it with...
I made my comments and stand by them...this is after all a board of discussion...opinions are supposed to be freely exchanged...
Some of you have chosen to ignore some of the posts by persons who have become more ill by using JUST herbs...what about them?
In closing, you can all do what makes you feel better...and God bless....and I will continue to give real advice as I have experienced same to folks who want real advice..instead of remedies that were popular when they burned witches for concocting the same stuff....zman
[ 16. June 2006, 09:40 AM: Message edited by: lymie tony z ]
-------------------- 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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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
I personaly read this thread and I dont see a problem with anything lymie tony z said. ps I dont know him either maybe some of what he said has points.
-------------------- 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.
posted
Regarding the trouble filling pill capsules with herbal remedies.
I used to do that in the beginning. Dang, what a chore.
Now I make dococtions instead and drink the stuff.
Specifically i make dococtions of Andrographis, Stephania Root and Smilax. I put it all together in a 1 Gl pot and let it simmer for about 1/2 hr. Then it let it cool off for at least 2hrs before straining it into bottles.
I make about 1 liter every day. Takes a couple of minutes only. It brews and cools off all by itself . Smells good in the house too.
In the beginning I could hardly drink it. Particularly the Andrographis is extremely faul tasting and bitter.
However, I got used to it. And now it's not a big deal anymore.
All in all, during the course of 1 day, I estimate I spend 15-30min on taking/preparing supplements/pills/dococtions/mixtures.
If I include the time to make my teas too (ginger, sage, etc), add another 10min to that.
Michael
-------------------- I'm not an MD. The above is IMO and in my experience as well as from health related books.
I've had symptoms consistent with neurological Lyme disease since 1986. Was diagnosed with Lyme in 2004. Am feeling better now than ever before. Posts: 702 | From NY | Registered: Jul 2004
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quote: please sign in if you have gotten lyme under control with only herbs-no abx � Post A Reply
So argueing here for Dr.B.'s protocol is at least not very close to the topic, even if expressed as "objective opinion". Maybe to do so is not a real problem either, but why then call others trolls if they express their "objective opinions" here and there?
Pluralistic spirit is a great thing @ the LymeNet forum (imoo), shouldn't hurt anybody, let's keep it!
Posts: 71 | From germany | Registered: Mar 2006
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klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
I take back all of my compassion for Tony.
It would be nice if he actually READ what I said, but I don't think it would matter, since he has had it in for me for awhile, for NO reason I can think of.
I have NEVER said anything bad to him, in fact I have never even spoken to him before, until he sent me a nasty PM awhile back, also out of the blue, for no reason at all, since we had never posted to on each others posts.
I took ampicillin 16 YEARS BEFORE being ill and did not have a herx but an anyaphylactic reaction where I could not breathe.
I was BITTEN by a TICK, TWO WEEKS prior to becoming ill, 16 years later.
I had allergy skin testing whcih showed severe allergy to ABX. Not herx, ALLERGY confirmed by skin testing.
I have documented Lyme by two tests, and documented brain and heart damage, and ran a 3 city support group for ten years.
I don't know why you have a bug up your *** ,but I'd kick it if I could reach that far. Which one of us is a troll? It ain't me, buster.
Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
well-again - thanks for the answers .
i'm sorry for the tangents.
i really did want to hear from people who are successful with herbs. i'm not trying to start a problem here.
i had a bad experience with alt tx at first-then 3 yrs orals now maintain with alt tx. i would not be independent with out my alt therapies and herbs now. they are very impt. but so were my abx.
i talk to a lot of newbies and i wanted to see if things had changd. i used to think a good zap with abx and then a lot of cleanup and maintenece with herbs and alt therapies and lifestyle changes was the best we could do.
it will take me while to weed thru this thread now-but i thank you all for your input. i know there are other threads that debate whether herbs or abx are better. maybe some of you could finish the debate over there or even start a new thread for that.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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JimBoB
Unregistered
posted
Thanks 777 for REMINDING us what THIS is supposed to be about, again.
I personally don't have any "trouble" at all filling my capsules. I normally do it while watching TV so it really isn't taking any extra time from my other chores.
It takes me a little longer, being distracted by the TV, but I don't mind at all. I am very relaxed doing it. I did a bunch today, watching the Cup qualifying on Speed.
Tomorrow I will probably do some more while watching the NASCAR truck race. And maybe some more when watching the Cup race on Sunday. Course I am retired now and can do what I damn well please WHEN I want to. IF I wasn't filling the capsules I would be reading a car magazine during commercials anyway.
So, while it may be a hassle to some of you, it is not to me.
I look at it as a good paying job. I save tons of money doing it. IF you are a Lymie who isn't working anyway, why not save yourself money and help yourself to good health at the same time?
Besides this is not an every day thing. Making them I mean. Taking them, yes.
Also, I detect mr. z to be a politician or lawyer. He doesn't actually accuse, but cleverly insinuates.
lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Thanks Tree for being able to read correctly my comments...
Hey jimbob, yeah I'm a real clever fellow...glad you can recognize that...
Klutzo...you have put stuff on this thread that is just not true about me....we live close enough to meet...so where and when would you like to meet...
I'll let you try to kick my *** if you want...NOW who has lyme rage honey? Or it could be that knock on the head you say you got.
Ipkayak...I appologize for my part in somehow having this thread go the way it did... It seems that when an honest person uncovers some questionable contributors a war of words ensues...
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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Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Ipkayak, there's a Lyme Disease Alternatives Forum over at Curezone. Some very interesting posts there.....
I'm not sure if you have to be a member to read the posts, so not sure if this link will work. It is set up a lot different than LymeNet, but see what you think. http://curezone.com/forums/fd150.asp?f=58
Klutzo, I agree with you. 'Nuff said.
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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Since everyone is different, everyone needs to address their issues in whatever way they feel makes the best use of their time, money and tolerance for medicinal regimens.
That is to say, to each his own.
For myself, I had years and years of oral abx, some IM injections, many operations and a bout with septicemia BEFORE I was even diagnosed with Lyme disease.
After lyme, lots of abx but sporadically, and I was allergic to many of them, well, the ingredients within them, like povodone, iodine, annatto, and some other stuff. So it severely limits abx for me. I get anaphylaxis. But since lyme does that in me with food items, my diet is extremely limited too.
I found that there are certain foods that if eliminated from the diet, do seem to improve the process a bit. But that is transient, as if you return to the diet, symptoms return.
Most improvement with me came from switching to whole, organic foods, no spices, no processed salt (which causes anaphylaxis too!!!) I eat meat, fruits and veggies that are not grown in high-iodine containing soil (WI & IL are completely depleted of it and I live in WI, so that works out great for me to eat locally grown).
I can no longer tolerate shellfish or most fish, so I'm cross-reacting to these as well, with yup, you guessed it, anaphylaxis. I am also reacting now to bee and insect stings and bites with yup, anaphylaxis.
Funny thing Lyme does to the immune system, and sends it into hyper-overdrive. If you test me via skin and serum, my tests all show I am not allergic to anything. Nope, anything. My guess is that the medicinal allergies are not really allergies at all, just the body freaking out due to the lyme disease.
I have been wondering what the common thread is with the shellfish, salt preservatives, annatto and iodine that the lyme critters react so strongly. And if I even come close to a food containing pesticide, an anchovie, or one of my animals' wormer medications, my nervous system goes into immediate panic attack mode.
Very weird indeed.
I had IV abx for several weeks and it was pure hell on my system....but I got better. Substantially better. But it took a long time, and I had to cooperate with the process by eliminating sugar, and exercising with strength training to get reconditioned. That was the hardest part. I went from being unable to walk across the floor to being able to horseback ride.
I am still not better, but IV abx gave me the longest, strongest sense of a "better" self than I have had in the 14 years since I was infected with lyme. I vote for a combo therapy, but would not rule out abx.....despite the risks and problems associated with them. If you can get a good jump on the bug and then support that process with herbs, supplements, etc. that is "a good thing" says Martha.
Read "The Singing Forest, A Journey Through Lyme Disease" available at www.lulu.com/lyme
Post your name and lyme story on www.lymeleague.com the place for patient stories.
PJ
-------------------- PJ
www.LymeLeague.com"Together We Grow Stronger" Posts: 139 | From A tiny little home office in the middle of Wisconsin | Registered: Feb 2005
| IP: Logged |
Since everyone is different, everyone needs to address their issues in whatever way they feel makes the best use of their time, money and tolerance for medicinal regimens.
That is to say, to each his own.
For myself, I had years and years of oral abx, some IM injections, many operations and a bout with septicemia BEFORE I was even diagnosed with Lyme disease.
After lyme, lots of abx but sporadically, and I was allergic to many of them, well, the ingredients within them, like povodone, iodine, annatto, and some other stuff. So it severely limits abx for me. I get anaphylaxis. But since lyme does that in me with food items, my diet is extremely limited too.
I found that there are certain foods that if eliminated from the diet, do seem to improve the process a bit. But that is transient, as if you return to the diet, symptoms return.
Most improvement with me came from switching to whole, organic foods, no spices, no processed salt (which causes anaphylaxis too!!!) I eat meat, fruits and veggies that are not grown in high-iodine containing soil (WI & IL are completely depleted of it and I live in WI, so that works out great for me to eat locally grown).
I can no longer tolerate shellfish or most fish, so I'm cross-reacting to these as well, with yup, you guessed it, anaphylaxis. I am also reacting now to bee and insect stings and bites with yup, anaphylaxis.
Funny thing Lyme does to the immune system, and sends it into hyper-overdrive. If you test me via skin and serum, my tests all show I am not allergic to anything. Nope, anything. My guess is that the medicinal allergies are not really allergies at all, just the body freaking out due to the lyme disease.
I have been wondering what the common thread is with the shellfish, salt preservatives, annatto and iodine that the lyme critters react so strongly. And if I even come close to a food containing pesticide, an anchovie, or one of my animals' wormer medications, my nervous system goes into immediate panic attack mode.
Very weird indeed.
I had IV abx for several weeks and it was pure hell on my system....but I got better. Substantially better. But it took a long time, and I had to cooperate with the process by eliminating sugar, and exercising with strength training to get reconditioned. That was the hardest part. I went from being unable to walk across the floor to being able to horseback ride.
I am still not better, but IV abx gave me the longest, strongest sense of a "better" self than I have had in the 14 years since I was infected with lyme. I vote for a combo therapy, but would not rule out abx.....despite the risks and problems associated with them. If you can get a good jump on the bug and then support that process with herbs, supplements, etc. that is "a good thing" says Martha.
Read "The Singing Forest, A Journey Through Lyme Disease" available at www.lulu.com/lyme
Post your name and lyme story on www.lymeleague.com the place for patient stories.
70 capsules a day? I would gag on the third or fourth. Anyone who can take that many is a G-O-D!
-------------------- PJ
www.LymeLeague.com"Together We Grow Stronger" Posts: 139 | From A tiny little home office in the middle of Wisconsin | Registered: Feb 2005
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posted
There is a family of seven I know who has lyme - some very severely who have made incredible progess from taking samento.
I guess many people dont post here on alternative things that help them because they feel that they will get attacked and that is a shame. We should have an open mind and be happy for whatever works for someone so they can move on to better health.
[ 17. June 2006, 10:08 AM: Message edited by: Nori ]
-------------------- Nori Posts: 109 | From Virginia | Registered: Mar 2006
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Amen Nori.
People who don't believe in alternative should stay out of posts directly discussing alternative care.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
We are trying to hit it from all angles...abx and herbal supplements. So, any information I get from both sides is of benefit. Keep posting, someone is listening!
Posts: 2903 | From AZ | Registered: Feb 2006
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Have you been tested or treated for leaky gut? Sounds like that could be the cause of some of the food reactions you are having.
As for the iodine, I posted a couple of times on this in the past. I don't think you actually have an allergy -- I think the iodine is stimulating your immune system -- hubby used to have seizure-like episodes within about 30 minutes of taking transfer factor which is another immune booster. This is the same reaction he has to antibiotics and any herbs or anything that actually is effective against the Lyme. Over time the reactions have decreased slightly.
Don't necessarily think your immune system is overactive -- more likely that the toxins created by the dieoff are the problem.
Shellfish and most all fish have a fairly high iodine content -- you may simply be reacting to the increased immune response. Pretty sure that this actually indicates an underactive immune system and a deficiency in iodine.
Hubby did actually have the runny nose response to the iodine -- the day before this happened he actually had a zero mg Ativan day -- that is almost unheard of -- normal is about 4 mg daily -- give 1/2 -1 mg doses for multiple daily seizure-like episodes.
One other time this past year he had a zero mg day as well -- that was the day before he got a head cold. In my opinion, both times the immune system was in transition between Th1 and Th2 response I think -- just haven't figured out how to keep it in the right groove -- whatever that is.
klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
Hi Barbara, I just want to tell you that I took Dr. Z's herbal Protocol for six months. They will make you stink of garlic, so prepare your husband, if you have one! Buy him a clothespin to put on his nose . Actually, I like the smell of garlic.
One of the products, Circulation P, raised my blood pressure too high, but if you are a typical Lymie with low blood pressure, that may even help you get more energy. I already had high blood pressure before that.
Good luck to you,and I hope someone will come along who can answer your other question.
Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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JimBoB
Unregistered
posted
I had arthritis BEFORE I got Lyme. Then it seemed to disappear when my Lyme arthritis came along. Now that the Lyme arthritis is better, the regular Arthritis is back. I some ways more painful than the Lyme arthritis.
The Lyme affected my tendons more and the regular arthritis affects my knee JOINTS more so, along with my shoulder and foot joints.
IT is hard to explain the difference, but I can usually tell.
HERBS help alot on the Lyme arthritis. I just reported on this on a thread just above this one.
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