My family rarely takes medication, except for the ocassional need for an antibiotic when really down with strep or a sinus infection, etc. So the idea of my son (almost 18 years old) taking antibiotics for months or years is completely foreign to me. Instead of meds we are used to relying on homeopathics, herbs, supplements, and lots of organic veggies (which my husband grows for the family). I am open to the concept, however, if taking antibiotics long term is necessary to kill off the lyme. (He's had it probably 4-5 years.)
Before I have him jump into long term antibiotic treathment, however, we should have our eyes wide open. Can you kind folks explain what side effects he will be in for besides herxing? Will his liver become damaged? Will he become antibiotic resistant?
Thanks for the help once again, Judy (The newbie mom with all of the questions lately) Posts: 35 | From Litchfield County | Registered: Mar 2006
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
Hi Judy/Mom,
You questions are understandable. Probably best left to ask a Lyme Literate Doctor.
There are alot of things you can do to boost you immune system. Stuff from the health food / vitamin store.
There are probiotics like acidophilus pills from the fridge section in the vitamin store or plain yogurt. There are probiotic mixes or pills that replenish the good bacteria in your stomache.
As for the liver question. Honestly don't know how your sons liver will hold up. Most of our doctors test our blood once a month. Also again at the health food store there are numerous liver support herbs and such.
My liver enzymes were slightly elavated 2 months ago so I started taking milk thistle.
By the way all the vitamins minerals physillium acidophilus and probiotics need to be taken 2 hours away from antibiotics.
8 years sick / 1 year on antibiotics (has made a big difference.)
Overall I have been getting better. Lately the pain has been minimal the past 3 weeks.
The best to you,
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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bettyg
Unregistered
posted
Welcome Judy to the board. Breaking this up for me..
quote:Originally posted by DeLo5: Hi, My family rarely takes medication, except for the ocassional need for an antibiotic when really down with strep or a sinus infection, etc. So the idea of my son (almost 18 years old) taking antibiotics for months or years is completely foreign to me.
Instead of meds we are used to relying on homeopathics, herbs, supplements, and lots of organic veggies (which my husband grows for the family).
I am open to the concept, however, if taking antibiotics long term is necessary to kill off the lyme. (He's had it probably 4-5 years.)
Before I have him jump into long term antibiotic treathment, however, we should have our eyes wide open.
Can you kind folks explain what side effects he will be in for besides herxing?
Will his liver become damaged?
Will he become antibiotic resistant?
Thanks for the help once again, Judy (The newbie mom with all of the questions lately)
Judy, good for you looking at the entire picture that you can with the symptoms, etc. you know he has.
At least your son is getting treatment NOW 4-5 yrs. after the fact vs. many of us 30-50 years later. So his chances are better in my opinion of 1.5 yrs. of chronic lyme treatment after 34 yrs. of being misdx!
Judy, I suggest your making a chart or I know of someone who has talked about a chart she uses & has posted a web site for it. Perhaps a separate post asking for this will help you get the right person.
One thing I've had to become my own sick advocate of is WHEN I need testing for my various things: diabetes a1c, urine tests for it, and now LYME issues!
I've gone to 1 PCP for 25 yrs., and to a beginner llmd for 1.5 yrs. I ask that each office send the other office my medical records from that visit. My PCP reads it, but they do NOT record any of the blood tests into THEIR records and are wanting to do DUPLICATE testing.
I don't remember your name from before, so I'll copy/paste my newbie info here, but hopefully others have directed you to TREEPATROL'S NEWBIE LINKS and other important things.
Welcome to this 24/7 LYME support group board!
Here's TREEPATROL's and Tincup's combination newbie links.
Print off the links then check them off as you read as you could spend several months reading all of this.
print & read Dr. Barrascono's 2005 info first; you will come back to this often.
Extensive info in Treepatrol's newbie links about the meaning of WESTERN BLOT IGM/IGG test results from Igenex! Be sure to read or print this info IF Igenex tested you ok!
Also, see Cheryl's extensive web sites on: LD DIAGNOSIS, SYMPTOMS, & TREATMENT ... wonderful! Read the area on CO-INFECTIONS! You could have from 1-12 other illnesses that tick is carrying...lyme, malaria, etc.
If you are showing symptoms of co-infections, I would like to suggest being tested for co-infections when you have LYME western blots done. It isn't cheap!! But if you are positive, you can treat the co-infections first, and then work on LYME symptoms.
You will need 2% amber and 10% amber ... Style no. 901 and 910. 1-800-521-9746 TOLL- FREE
mention you have lyme and marshall protocol, they will give you 20% off!
Also they have been kind enough to replace the SCRATCHED LENSES & BROKEN BOWS! How's that for service?
I don't drive often at night, but I can wear NOIR's 901 lenses at night while driving; it creates soft candle lights coming at me...tolerable. NOT to wear in town with all the action of people crossing where they shouldn't be, etc.
from LOU to Betty on LONG web links and Thank You Lou!: "If you hit the return key in the middle of a link, I don't think it will be clickable anymore. An alternative that maybe Betty should be telling people about is the tiny url website. I have it on my tool bar at the top of the page and use it for those incredablylongwebsiteaddresses.
All you have to do is ask tiny url to produce a short version, which it will do with a unique address, which you then use instead in your post. Works just the same when clicked! Here is the website, spread the word!
3-1-06, fyi, I tried dragging tinyurl to my toolbar without success, so that's why I currently have LONG addresses vs. short tiny ones! I'll keep trying.
Good to hear you are into the herbs. I wasn't till I got Stephen Buhner's Book HEALING LYME.
Once you get on the RIGHT herbal protocol, they do wonders for your Lyme.
You are SMART IF you do NOT go on long regimens of antibiotics of any kind. SOME may be okay along WITH the herbs, but us the herbs as your MAIN defense against the Spirochetes.
IF you get an LLMD, and he/she doesn't use herbs along with the abx, then please find another LLMD.
You only have ONE liver you know.
I use the Milk Thistle for the liver, but NOW I have added Red Root also, as it is not just for the liver, but also the REST of the LYMPH system that the liver is part of.
ALSO be sure to use plenty of Sarsaparilla to cleanse your blood, and yes use the Acidophilus.
I have a post up called Herbal Protocal that I am taking, HELPING! out there. Check it out. You will find pretty much all the herbs that I take on it for Lyme.
You may PM me also, if you like.
GO for it. But try not to destroy some parts of his body for the sake of fixing others.
I am also from a family who rarely uses antibiotics or medications of any kind.
It has been a shock to my family to see me take so many antibiotics over the last year and a half. I was so frightened by what was happening to my body that I decided that I needed to take some risks with alternative treatment
( alternative being using something like antibiotics which I would never have considered in the past!)
I think that it's important to note that herbs and tinctures can be just as dangerous as antibiotics- and that antibiotics are based on naturally occuring substances. I have had alot of success with Bicillin LA which is a penicillin based antibiotic for instance.
I eat yogurt every day and have had very few side effects from oral antibiotics- I have not tried IV and hope to be able to avoid that route-
I am happy that I didn't misuse antiobiotics prior to developing this- and hope that my body has been better equipped to fight Lyme disease as a result.
I also believe that herbal treatment can be very useful and powerful in fighting this.
There is so much to learn and I don't claim to have any answers, but you've come to the right place- Lymenet has been a wealth of knowledge and support for me.
Best, Sarah
Posts: 119 | From new york, NY, USA | Registered: Apr 2005
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posted
I noticed you didn't have my two faves on the list. silver and oil of oregano. Nature is chock full of antimicrobial properties, we simply do not hear about them because most require synergy and cannot be patented and produced. $$$$$$$$$
Just mho, but I would go natural first. I can state that silver and oregano are far safer than traditional abx. As to the other herbs READ up on what it does and toxicity and decide for YOURSELF whether they would be of benefit. If your lucky that may/should be enough. If not I would then throw in some abx. Now your talking effectiveness! The chances of abx alone solving the problem gets less and less as time goes by. Best of luck.
Posts: 731 | From Humble,TX | Registered: Feb 2005
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
My family- self, son, and daughter had lyme for 4yrs, then have been treated for 1yr.
We are improving.
It seems to me that understanding the disease as much as possible will help you with your decision.
I am coming from the other end of the spectrum, wasn't into organic or herbs, but now getting into it.
My concern with not treating with antibiotics is that lyme disseminates throughout every body system. It seems to me that killing the spirocheets in deep muscle tissue, brain, and everywhere else is going to take something very potent. I am not sure how symptomatic your son is but 4yrs is a good while to have lyme.
There is so much to learn and so many decisions to make. Glad you found this site and best wishes.
char
Frequent Contributor (1K+ posts)
Member # 8315
posted
PS
Studies of folks on long term abx treatment have not shown ill effects, even after years of treatment.
Posts: 1230 | From US | Registered: Nov 2005
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JimBoB
Unregistered
posted
Hi Char:
I am wondering IF you can show us the studies that you are talking about where that are NO ill affects from LONG TERM abx treatment?
I have not participated in any blind studies myself, but know that the abx's that I was on were super hard on my stomach for sure.
Because of the pain they caused me and the return of my arthritis and neuro symptoms, I gave up on them about two weeks ago.
After about 5 days, I started feeling a lot better, off doxycycline. I am continuing to improve, but had a slight setback in the vision department after a heavy protocol of Artemisinin the last three days.
I will be off the Artemisinin starting tomorrow so I feel that should resolve itself again. Will keep you posted.
I also want to make it perfectly clear that I am NOT advocating NO treatment of Lyme Disease with antibiotics. I am merely urging reconsidering LONG TERM treatment of Lyme with abx, since they are usually quite ineffective after a few months on them as the Spirochetes that are left just hide from them after awhile.
ALSO, it is a proven fact, that a large percentage of people do NOT get cured from Lyme with antibiotics only. AND many of those that DO get help from antibiotics, RELAPSE after awhile. Many are back here on this board as we have read from time to time.
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
IT WORRIES ME TO SEE PEOPLE ON HERE TELLING NEWBIES NOT TO DO LONG TERM ABX---VERY FEW OF US GET BETTER WITHOUT A GOOD DOSE OF ABX IN THE BEGINNING. WE ALL KNOW THE HORROR STORIES OF UNDERTREATMENT.
NEWBIES-REMEMBER-MOST OF US ON THIS BOARD ARE NOT DOCS...
I HAD 3 YRS OF HIGH DOSE ABX. MY LIVER WAS TESTED MONTHLY-I NEVER HAD TROUBLE. I USED ALOT OF NYSTATIN, GOOD QUALITY PROBIOTICS, SBC AND MILK THISTLE. FOR A YEAR AFTER I CLEANSED. I WAS ON A YEAST FREE DIET.
I ENDED UP WITH REFLUX. TO ME IT WAS WORTH IT. I WOULD HAVE LOST MY JOB AND ENDED UP IN A NURSING HOME IF I DIDN'T . MY KIDS WOULDN'T HAVE GONE TO COLLEGE.
BEFORE TREATMENT I HAD SCHEDULED TO HAVE MAJOR SURGERY IN MY FEET TO REMOVE 20 JOINTS IN MY TOES BECAUSE I COULDN'T STAND THE PAIN ANYMORE .. A DOC ACTUALLY AGREED TO DO THIS. I WAS ALSO IN BED 23 HRS A DAY. UP FOR BATHROOM ONLY. THANK GOD I WENT TO THE 98 CONFERENCE AND FOUND OUT THE LYME WOULD JUST FIND ANOTHER PLACE TO GO AND I WOULD BE DEFORMED AND UNABLE TO WALK W/O ASSISTANCE AND STILL IN PAIN AND FATIGUED. OTHERS HAVE HORRIBLE NERVE PAIN, DISABLING ARTHRITIS, SEIZURES AND DEMENTIA.
C-DIFICILE IS A SERIOUS SIDE AFFECT THAT CAN BE PREVENTED.
YEAST IS ALSO A PROBLEM...BUT ALL OF THESE CAN BE HANDLED. READ SOME MORE ON HERE IF YOU THINK IT MIGHT BE BETTER TO NOT DO ABX. SEE WHAT HAPPENS WHEN PEOPLE CAN'T GET TREATMENT.
JIMBOB-I JUST READ YOUR SECOND POST---I JUST THINK ITS IMPORTANT FOR US TO KEEP SAYING WE ARE NOT DOCS-AS FAR AS THE KETES HIDING AFTER A FEW MONTHS-THATS WHY WE HAVE LLMDS WHO KNOW ABOUT FLAGL AND TINI AND ENZYMES AND PULSING AND COMBOS.
WE ARE ALL DIFFERENT---BUT I REMEBER DOC B SAYING HE DID GET ONE PERSON BETTER W/O ABX BUT IT WAS VERY VERY HARD AND MOST PEOPLE COULD NOT HAVE DONE THE LIFESTYLE CHANGES NECESSAY. BUT HE SAID ONE PERSON-THATS NOT MANY CONSIDERING HOW MANY HES TREATED. MOST NEED MORE THAN THE 6-8 WEEKS UNLESS THEY FIND THE LYME RIGHT AWAY.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Lpkyak,
Thanks so much for what you wrote. I was a little sheepish in the beginning about the high-dose antibiotics, but that changed early on, when I had gone in for an acupuncture treatment.
The acupuncturist wanted a complete list of all my medications and supplements, so she could use it in developing a Chinese herb protocol that would be complementary.
I told her everything and then, a bit defensively, told her about the antibiotics. Her comment was swift and clear: If you were in China and got this disease, you would likely be treated first with antibiotics, and adjunctively with other things.
I took that to heart and haven't regrettted it. I also pursue several alternative things, especially the acupuncture and Chinese herbs.
What I do think is important is that I keep both my acupuncturist and my LLMD informed about everything I'm taking.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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posted
I understand how you feel about antibiotics(abx). I only take them when it is necessary.
From all I've read & experienced with Lyme, abx is the basis for fighting Lyme disease, but it is also very important to have a healthy lifestyle - sensible diet with as little carbs & sugar as possible, nutritional supplements, lots of water, exercise when able, plenty of rest, etc.
While cases of LD are similar, they are also different in each person & each person responds differently to the abx.
Your best resource for your son's treatment for Lyme disease will be the Lyme Literate Med Dr (LLMD) you work with. He/she will have the background & experience to know what your son needs.
One must be careful about the combination of various herbs and meds so they don't work against each other.
I don't know what symptoms your son has. That can have a lot to do with the choice of treatment (abx, dose, length of time, etc).
Neurological symptoms are more difficult because many abx do not cross the Blood Brain Barrier (BBB) very well. I don't know, but I would think that herbs would be less likely to cross the BBB, so you need the advice of an experienced Lyme doctor.
My 14 yr old grandson had Lyme about 5 yrs before seeing Dr J, the Lyme Pediatrician in CT. His diagnosis was Lyme Encephalitis (inflammation of the brain) & he will be on abx for an extended time. He has been on a combo of abx for 2 yrs. He has had no ill effects, but is showing improvement.
My recommendation is to start with abx & follow the LLMDs instructions. Your son has already had Lyme 4-5 yrs, so you don't want to put off treatment any longer. It just gives the spirochetes more time to spread & find places to hide.
Generally speaking, when young people are given adequate treatment, they respond well & bounce back faster than older patients.
In what state do you live? Your MAIN CONCERN is being sure he's under the care of a "really, truly" LLMD.
Encourage your son to join the LymeNet Family. He probably has questions he'd like to have answered, too.
Keep in touch. We care!
Posts: 4638 | From South Carolina | Registered: Mar 2001
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JimBoB
Unregistered
posted
Dear CBB:
Quite an interesting post you put up there. Course you KNOW I couldn't just let it sit, EXACTLY like that, don't you!
You stated:
"Neurological symptoms are more difficult because many abx do not cross the Blood Brain Barrier (BBB) very well. I don't know, but I would think that herbs would be less likely to cross the BBB, so you need the advice of an experienced Lyme doctor". ###
I SURE am glad you said "YOU DON"T KNOW"; because you sure do not. It appears you have been on this board a long time, but you have not done any studying of herbal treatments.
I PERSONALLY had/have neurological symptoms, and the HERBS crossed the BBB in only a few short days of my INITIAL treatment, and cleared up the brain fog AND vision problems, UNTIL I went on abx after about 6 weeks on the herbs.
I have been off the abx for two weeks now, and after about 5 days some of my symptoms got better, but it wasn't till early this evening, that I noticed that my vision had returned to the super bright, contrasty AND sharp vision that I enjoyed BEFORE going on abx a little over two months ago.
I could go on and on, on HOW I have been helped in this crummy Lyme Disease with HERBS, but WHY?!?. I have posted that so many times, it should be common knowledge by now. (Actually it IS, among those who have read my posts and are humble enough to at least check it out and try similar protocols).
So, IF someone is serious about looking into herbs, BUY the Stephen Harrod Buhner book, "Healing Lyme". READ it, STUDY it, and TRY what HE recommends. (After all, HE is the Master Herbalist). AND/or read my post: "Herbal Protocol I am taking, HELPING!". THEN do what YOU want.
Take EVERYTHING you read and/or hear with a grain of salt. Research it for yourself. Take the time to do it right. I DID! And I am not sorry.
I can tell you stories that will make your toes curl. AND stories that will make you jump up and down for joy. But I have a life too, and just don't have the time for all of that.
I am 64 years old, and MY time on this earth is MUCH reduced compared to MOST who post on here. And I want to still do some of the things I dream about. I can't do that IF I use up ALL of my time doing other things.
I am basically reporting WHAT has helped ME and others that I KNOW of, that is all. IF someone doesn't want to try it, so be it. IF they do, so be it. LYME is NOT usually a disease that will kill you in an instant. BUT it CAN kill you eventually, either by NOT treating it, OR treating it the wrong way.
There is only ONE PERSON responsible for MY health. THAT is ME. There is only one person responsible for YOUR health. THAT is YOU! Take the responsibility seriously. You may not get another chance.
I am VERY serious about getting well. I am using EVERY means at MY disposal to do so, and will continue to do so. AND I do NOT want it to go on for years, unable to get to my projects. Because then there won't be any.
Maybe that sounds a little selfish, and I even think it is. A little.
I am doing this, NOT for money. NOT for fame. NOT for the "fun" of it.
I am doing it to HOPEFULLY help someone out there that is NOT going to get cured by abx's alone. MOST with chronic Lyme will not.
I don't have much desire for money. Obviously, as I have very little of it.
I don't need fame. I already have that in my photography career.
AND this is NOT the "fun" part of my life. Old cars, street rods, racing and Idol are!
quote:Originally posted by lpkayak: IT WORRIES ME TO SEE PEOPLE ON HERE TELLING NEWBIES NOT TO DO LONG TERM ABX---VERY FEW OF US GET BETTER WITHOUT A GOOD DOSE OF ABX IN THE BEGINNING. WE ALL KNOW THE HORROR STORIES OF UNDERTREATMENT.
It worries me that people are telling others to take long term abx and everything is going to be OK. Total resistance to abx is a matter of when NOT if. By stating they will be OK by abx alone your giving a false hope that can't be backed up. Maybe they will get better maybe not. My post always state use natural abx like silver,oil of oregano, Vit C and THEN throw in the abx. Why? first do no harm.
I have nothing against abx but I fear that they by themselves are just not enough. Also it's my doc who gave me these "supplements" so it's not just my opinion.
Posts: 731 | From Humble,TX | Registered: Feb 2005
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I had the same situation. My GP, also a LLMD, wanted to avoid antibiotics and try other methods (uno de gato, rest, hi doses of vit c and IV perioxide). I even went to an alternative detox program in Mexico.
I feel these first four months of tx were a waste of time.
I had to get over my resistance to taking meds and antibiotics.
I have taken 3 different courses of oral antibiotics since July. I had terrible, long-lasting (weeks) herx reactions in the 2nd and 3rd course, which I am still in and struggling to be with / adapt to.
My herx were severe. Not everyone has these. I hope your son does not. The main symptoms are like having a bad, bad flu that does not go away -- nausea, chills, muscle and joint pain.
In the second course, after about 4 weeks, I also developed a severe depression. This is unlike me. I think it was partly discouragement at being so sick for so long and hating it. But I also think it is part of the herx or Lyme.
That is because the spirochetes are in the brain for many of us. If they stay there, and/or when they die, their toxins create encepalopathy -- swelling of the brain -- and blood flow decreases, causing strange symptoms.
I hope none of this happens to your son.
However, being prepared if it does happen, will help. You need to really work closely with his MD.
I also struggle because I don't want to take narcotics. However, they have been necessary. Anything I can do to be comfortable, and not let the herx reactions get the upper hand, I do. I have learned, and each person will be unique, that it is better to take pain medicine before the episode grows, because once it does it take more medicine and there is more physicala suffering.
For intestinal protection I take probiotics -- 25 billion -- per day.
Doctors do have to monitor liver functioning.
I also have an 18 year old with Lyme. REST is important. I retired early on disability due to Lyme so I can avoid any stress. My teen wants to be out and about, like most teens. She doesn't rest as much as me. But we have allowed her to drop out of college until she gets better, and she works maybe 15 hours a week.
Good luck. The main reason I write is because I identify with your feelings about meds. But I put myself through hell because of it. Lyme, for me, is a severe, catastrophic disease. I want to encourage you to work with your doctor and alternative methodds if that is what you want to make him as comfortable as possible during a potentially LONG treatment phase.
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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For intestinal protection I take probiotics -- 25 billion -- per day.
Doctors do have to monitor liver functioning.
.... The main reason I write is because I identify with your feelings about meds. But I put myself through hell because of it. Lyme, for me, is a severe, catastrophic disease. I want to encourage you to work with your doctor and alternative methodds if that is what you want to make him as comfortable as possible during a potentially LONG treatment phase. [/qb]
Please listen to Jeff, cbb, char, sarah, and Kayak! Your son's LIFE is at stake! Herbs have their place, but antibiotics are necessary to kill out the Bb!
I took abx for more than 4 yrs, with no ill effects! I made sure I took probiotics and watched my diet [no sugar, low carb] and had my liver enzymes checked every few months.
I never had a single test come back showing high liver enzymes or damage to kidneys, etc. I did take milk thistle the entire time.
--------------------------
KAYAK....Please lose the CAPS!!! Thanks!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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JimBoB
Unregistered
posted
To Lymetutu and others either misinformed or uninformed:
TUTU, NOTICE the paragraph directly below this; just the fact that you say: "antibiotics are NECESSARY to KILL OUT THE Bb!" shows that though you have been on this board a LONGGGGGGG time, you have little or NO knowledge about HOW to treat Lyme that is USER friendly. By USER I mean the victims, us! ###
quote from Lymetutu:
Please listen to Jeff, cbb, char, sarah, and Kayak! Your son's LIFE is at stake! Herbs have their place, but antibiotics are necessary to kill out the Bb! ## unquote. ###
Below is another quote from YOU showing that you have little if any knowledge of YOUR body and/or anyones body for that matter. THINK. There is NO WAY that you and any other superman/woman could have taken even ONE antibiotic without at least SOME ill affects. (Or effects, IF you prefer). YOU just may have been incognizant of it. (as many are). ###
quote by lymtutu:
"I took abx for more than 4 yrs, with no ill effects! I made sure I took probiotics and watched my diet [no sugar, low carb] and had my liver enzymes checked every few months.". ###
Below, you state that you used an herb: Milk THistle to HELP save your liver. GOOD, but there are many others that HELP also. ###
quote by Lymetutu: "I never had a single test come back showing high liver enzymes or damage to kidneys, etc. I did take milk thistle the entire time.". ###
--------------------------
KAYAK....Please lose the CAPS!!! Thanks! [Smile]
-------------------- ###
Lymetutu, I think THE paragraph below of YOURS, says it ALL: ###
Quote by Lymetutu:
"Do not take anything I say as medical advice. I am not a doctor, but I DID stay at a Holiday Inn Express!". ###
- oops! Lymetutu ###
Therefore PULEEEZE do NOT TRY to scare others from becoming correctly educated in WHAT is out there to help in CURING Lyme Disease. EVERYTHING is someones OPINION, (Including Yours), but do not TRY to hinder what God has given us "naturally" to take care of the earth and ourselves and the animals. It makes my blood boil. To put it mildly.
HERBS not only CAN, but DO kill Spirochetes AND they keep the balance in our systems WHILE doing it. SHORT TERM antibiotics DO have a place in this war on our total ecological imbalance that the "powers that be" have perpetrated upon us peons, YOU included.
I personally just choose NOT to sit by and LET them continue to casterate us, as it were. I am dedicated to at least TRYING to find a SUPERIOR WAY of getting control of MY system. AND not have to suffer so much along the way like you and so many seem hell bent on doing.
I offer MY time and knowledge AND experience as a HELP to those who are humble enough to accept that MAYBE there really IS a better way.
I am glad you said good dose of abx IN THE BEGINNING.
Because I DO agree with IN THE BEGINNING. NOT long term. It is the LONG TERM ABX that makes it UNDERTREATMENT that you state.
THAT is "common knowledge" among the informed, all over this earth.
It WORRIES ME even MORE to see some telling newbies TO do LONG TERM antibiotics to CURE Lyme Disease. This is especially since it IS such common knowledge that LONG TERM abx do NOT CURE Lyme Disease. JUST the opposite is true, the MAJORITY of the time.
IF one leans toward abx to CURE Lyme, and I am NOT talking EARLY LYME, which is a whole different animal; then it SHOULD be backed up by a GOOD herbal regimen. IF not, you will PROBABLY either NOT keep it in remission, OR will relapse soon after quitting the abx.
IF I find out differently, I will be the first to let you know.
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
JimBob
Your anti- antibiotic campain here is dangerous for many people, specially for the newbies.
Just because you read a book and bought some herbs doesn't make you an expert.
JimBob You THINK about the harm you are doing to sick confused new people here that- wheather you believe it or not need abx therapy at some point, specially in the beginning!
Are you so sure that herbs are the only way to go that you would be willing to stake thier lives on it?
I am not saying abx or nothing. There is a place for herbs & alternative treatments. It is good to do the research and a place for both.
For the new people: Go to a qualifyed LLD and let him decide what is the best treatment for you. Be informed. Do the research.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
sorry bout the caps guys---why do they bug you so much anyway?
brent-i'm pretty sure i didn't say ONLY abx--NO supps. i hope noone else thought i was saying that.
i take a lot of supps. but i did all alternative stuff the first year-spent $10,000.00 and got worse. it wasn't until i did 3 yrs of high dose orals that i got rid of fatigue, severe foot pain and got a handle on a lot of other symptoms.
i absolutely had to use many herbs to do the abx and i have continued to use many herbs for the past 5 years since treatment
my main message is : most people need a good dose of abx in the beginning-this is info i get from the top llmds-but it was my experience also.
NEWBIES-things are getting a little crazy here-but it is a good place and there are ways to weed out good and bad info..first of all just understanding that most of us are sick-are not docs and may have cognitive problems i a good place to start.
it's also real important to have a good llmd and now it seems certain docs are using the term llmd when they really aren't, so it's important you actually talk/email to people about their doc.
i don't think anyone will disagree that two placed to get researched based info are dr. burrascanos guidelines and www.ilads.org
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
JimBob....I'm not going to waste any time in replying to you. Not worth the effort.
I've spent five years on this board helping others. I'm doing great and don't even have to show up here. So don't talk to ME about your innate desire to help others, OK?
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kayak...for me, the all caps are VERY difficult to read .... and it does seem like "shouting"
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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liz28
Unregistered
posted
Hi, what you are about to read is a highly one-sided opinion, but as someone who has been stuck on antibiotics for years, I don't believe the "you have to be on antibiotics for years" scenario at all. If I'd known then what I know now, this would have been over in six months. Really.
Editor's note: Uh oh, just went back online to edit this post, and saw the argument written above. So one quick add-on. Yes, I believe my current treatment would have finished the job in six months, but it's a combination of antibiotics and supplements.
Maybe the most important thing you can do, is take all that energy and put it into reading. Start with Dr. B's 2005 guidelines, and then read not only Lymenet posts going back a couple of years, but Google entries on the antibiotics and supplements you read about, so you have a basis for comparison.
If you read enough Lymenet posts, you should begin to see an evolution of treatments, as people test different avenues and see what works. This may be just my perception, but what it seems like has happened, is the longterm, throw-everything-we-have antibiotic regimen is being replaced by a much more targeted one. There are many latest-generation antibiotics on the market, and people experiment to see which ones they can physically tolerate, and which ones work for what they have. Then they stick with that.
For example, I do very well on omnicef and ketek, and can't take minocycline and levaquin at all. For other, it's the reverse.
You are always better off, and get faster results, if you visit an LLMD already educated about all the cutting edge treatments. Otherwise, even the best LLMDs will feel like they are throwing darts at a dartboard of symptoms, trying to hit a bullseye. And if you happen to visit someone who is not the right match for you, you'll be able to move on quickly.
There's many alternative treatments here to explore as well.
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david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
Hi
I dont think you are asking the right question.
Simply stated, Yes there are consequneces if one takes long term anything. With antibiotics, those consequences are not known in most cases. Some anitbiotics such as tetracycline are given for very long periods of time from purely cosmetic reasons and seem to have little ill effect. Newer drugs don't have the luxury of long term experience so there is no clear picture on some of them. Some are harder on the liver than others, but there are a lot of other things you can do to your liver (like drink booze or beer) that are even worse.
The question that you should be asking is "do the short or long term effects of antibiotic treatment outweigh the effects caused by not using them and allowing the disease to progress".
From a strictly technical persecitve, the answer is yes, provided that is what the physician recommends.
The acceptance of the use of Antibiotics to treat Lyme infection is universal. The only item in dispute is the duration. Some treat until the symptoms are gone (ILADS), and other treat on an arbitraryly set limit(IDA). Recent clinical experience is showing more and more that treatments that last until the symptoms are gone yeild better long term outcome. If someone is only 18 years only , the long term outcome is an important factor.
So, even "if" the treatment were to cause liver problems and it means that you should not drink alchohol in the future then so be it.
A relentlessly progresive lyme infection will most certainly reduce your quality of life to a much more significant degree and will by many accounts result in severve neuroligical problems as one ages. These are things that are to be avoided.
As far as herbs go, Many things have been tried, some people claim that they work or at least help but there is no consistent, verfiyable and properly documented case where it has erradicated or even suppressed a lyme infection. The improvements noted are by every account subjuctive, and thus while maybe the person feels better, the reasons why, the cause and efficacy of the herb is still unknown.
Also remeber that you dont know the contents or concentrations of the herbs. decriptions like "30 mg of xxxxroot extract" means nothing. To prove this, call up one of the companies that sell herbs, indicate you hae a patient with a yyy problem that has been taking the herb, and ask for the specific contents. You won't get a strait answer from most and you basically have to use a mass spectrometer to try to figure it out your self. In addition, there are a lot of herbs and "natural" substances that can really damage your body, no daily limits or LD50's are even known. If you start taking these things on your own then you have no idea what is going on.
At least with a Dr prescribed medication, if warranted, you will be required to take periodic blood tests to look at things like your liver function and blood count. Unless you have your own lab you can't get these things done on your own.
Those are my comments, I am sure some will not agree but since you asked I thoght I would give you my version of the answer.
Good luck, and if you are really worried about it get a second opinion from a second Dr.
Posts: 1184 | From north america | Registered: Feb 2003
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Thank you to everyone that has responded. From the passionate and lengthy responses it appears that this is a topic that needed to be laid out there. I may be wrong . . . but it seems like this thread has been even therapeutic (albeit painful) for many.
I just want to clear the record . . . my son's LLMD will be treating him with antibiotics. He is now on Augmentin 2 times/day (875 mg amox and 125 mg Clavulanate) primarily for the Scarlet Fever that he developed a few of weeks ago. Although, he did say the Augmentin will start to work on the lyme also. He'll be on the Augmentin for 6 weeks.
This doctor seems thorough (Dr. S. in Bpt). He checked his blood twice (in 2 weeks) to figure out what was happening with his Scarlet Fever infection. And he wants more drawn next week to be sure the infection is resolved.
In addition, blood was sent to Igenix last Monday. We have an appointment to see the Doctor again when his Augmentin round is done . . . and he'll tell us what to do next.
He told us if he feels it is in the brain, he'll probably order a Spect Scan and MRI. He said if necessary, he'll prescribe IV abx.
In addition, this LLMD does combine herbs and supplements. Right now he has my son taking Milk Thistle, lots of Probiotics, EmergenC, and Elderberry (for immune boosting).
I also added Caprin (caprylic acid) to his regimen because I think my son already has some yeast. (Our regular homeopathic practioner has told us he's had a touch of yeast on and off for years.)
We did the saliva test this morning, which I read about on this board. He spit into a glass of water first thing (before putting anything into his mouth) and some stringers did appear. The Caprin is supposed to help kill the yeast.
His LLMD also started him on 1 mg of melatonin to help him fall asleep (thanks Pam for the suggestion!!!). And it works like a charm. Previously he had trouble falling asleep before 1:00 am for many months. And he gets up at 6:15 am each morning for school! So finding a way to fall asleep earlier is really, really wonderful for him and his recovery.
Pam also suggested that, in addition to the antibiotics and herb/supplements, it is important to keep his life stress free, help him sleep more, and provide lots of support. It sounds like a good plan.
We also already eat home cooked food using organically grown, natural ingredients. My husband grows lots of veggies year round (we have a greenhouse) so we have the luxury of picking veggies and eating them within the hour.
My son eats mostly an ova/lacto vegetarian diet . . . although he will eat organic chicken and beef a couple of times a week. (He probably would be completely vegetarian if my husband and I didn't cook and serve chicken and beef at supper during the week.)
I should add that his LLMD said that he'll be checking his immune system and may make adjustments to the supplements. He also said he'll be making suggestions for his diet. Right now his only advice was to lay off the sugar and refined carbs.
As far as our regimen so far, please feel free to comment if you think that I am missing something.
Please note that my original question was never, "should he go on antibiotics". My question was "what side effects should we be aware of". We just want to go into this with our eyes wide open.
From what I read, it sounds like the liver becoming toxic and the overgrowth of yeast are the main side effects. And it sounds like these side effects can be reduced and/or eliminated by doing two things. 1. Support and detox the liver. 2. Take lots of probiotics (and yeast killing supplements or medicine when necessary).
To support the growth of friendly bacteria I'm also giving him naturally fermented pickles and umboshi plums (macro diet stuff).
Again, feel free to respond if you know of other side effects I'm not aware of yet. Naturally, I'll ask his LLMD each time he prescribes something what to expect.
Thank you again to all that responded. I can't tell you how comforting it is to have this message board. You members are an invaluable aid to working out these issues. The amount of available information is priceless.
Love to you all . . . and wishes for a full recovery. Judy
Posts: 35 | From Litchfield County | Registered: Mar 2006
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JimBoB
Unregistered
posted
Lymetoo:
WHAT do you MEAN you are NOT going to waste your time replying to me? You just did!!!!
I am SO glad YOU have helped to CURE many others on here. Keep up the good work.
And guess what, I won't talk to you IF you don't talk to me. Sound like a plan?
I can certainly live without YOUR snide remarks too.
SO far I have been fortunate that only a few get their panties in a knot, when discussing things of importance.
MOST on this list, I have found to be very helpful AND nice at the same time.
I am ashamed of you for YOUR post. You and I have PM'd MANY times.
WHEN have I EVER been AGAINST antibiotics in the beginning? Not once.
I am so open and honest that I have described exactly WHAT I have been taking, whether abx and/or herbs, AND the side effects they have ALL had on me.
Even Buhner, who is against abx in GENERAL, (because they are SO misused/overused); states in his book that it may be important to take antibiotics in addition to the herbs for awhile.
SO now I am wondering WHY you have come up with such statements as that I am anti-antibiotics, etc.. THAT could not be further from the truth on WHAT I have stated ALL ALONG.
I am just against LONG TERM antibiotics, WHICH has NOTHING to do with what ALL pretty much have said here that: abx in the "beginning" is important to MOST people.
I have had STRONGER abx than SOME of you have had for Lyme.
Take the 24 days of CIPRO I took six years ago for it. THAT was the strongest ORAL antibiotic known to man at the time, so I was told. AND it also nearly caused two deaths in women here that MY doctor was treating. BOTH of them had to have their Colons taken out to save their lives, that the CIPRO destroyed.
MAYBE THAT was what destroyed MY colon too, as I had had it earlier, BEFORE I got the Lyme. When I got it for curing Lyme, I already had NO colon. But guess I will never know for sure.
Heck, as a matter of fact, I had more Penicillin shots than food back in 1947 when I had Polio. (That was before the Polio vaccine, by the way). I spent about three months in the hospital, in isolation, with penicillin shots every 4 hours.
I felt like a pin cushion.
I have had many antibiotics through the years. TOO many.
But NOW with this Lyme, my stomach has gone haywire and the abx made it even MUCH worse. So therefore "I" have elected to feel BETTER by doing the herbs and some vitamins, only, to get rid of this disease.
AND I have more faith than a few on this board, in that I DO believe, based on the hundreds upon hundreds of years the herbs have HELPED people get cured of MANY diseases, such as Malaria, etc.. And the fact that they have already helped me more than I could have hoped for, DOES make me a staunch supporter of them.
So let the naysayers continue NOT understanding what I am talking about, and I will NOT understand WHY they want to do what they are doing.
posted
In our experience,the main side effects w/abx can be in the gut, with yeast, gastritis, leaky gut, and resulting food allergies. This only happened with one person in our family, a teen who also has diabetes, which greatly encourages overgrowth of yeast. She also took a lot of naproxen (similar to Aleve)and Advil, both of which affect the stomach, so avoiding these is important. Probiotics are hugely helpful of course.
This daughter has been off antibiotics out of necessity, and sees an integrative medicine MD who is very good. She is doing a lot of alternatives, including herbs, immune support, special diet, etc. However, honeslty, without the antibiotics, she has developed some new problems, mainly cardiac, and it is possible that the Lyme is in her autonomic nervous system.
We are sorting out what symptoms are from yeast, and what are from Lyme. She has also been on large amount of Diflucan and Nystatin for almost 9 months. Her liver is still okay with the Diflucan. I was anti-antibiotic on her behalf, with these problems, but it is clear that the bacteria are still affecting her w/out them. So, no answers!!! We learn to live with uncertainty, and she is an expert in making the best out of life no matter what.
I have been on abx myself for 5 years, and have had not side effects other than maybe two gyn. yeast problems/year.
My only problem is that I can't get off. If I miss even one or two doses, I start slurring speech, tremors everywhere, clumsy hands etc. This is only true for a small subset of patients, according to my LLMD, but is worth mentioning. I can't say I regret going on in the first place, since I was quite sick, but I do wish I could stop at some point.
My other daughter (also a teen) did abx for 5-6 months and has been completely well since. To be more specific, her primary care MD treated her for 4 weeks after a very positive Western Blot, thinking it was a recent infection. My LLMD saw her and kept her on for another two months, and she seemed fine. She came off and developed symptoms again. He put her on tetracycline for two or three more months, and she was fine, and has remained so.
So, the LMD definitely minimized treatment, and we could tell by what happened w/symptoms when to try taking her off, when to put her back on, and when, finally to keep her off.
It is helpful to find out if your son has any autoimmunity going on. Our Lyme has been complicated due to a tendency toward autoimmune problems. Actually, the scarlet fever may also result from autoimmune tendencies (not sure, but rheumatic fever does).
We all have positive ANA's and HLA-DR4 genetic markers. Some LLMD's test these, and it can be helpful information.
There is controversy about whether autoimmune illness can continue after the bacteria are killed, and I really have not yet decided what I believe or my older daughter, who is still sick. This is still an area of mystery in medicine. It is true however, that some doctors are treating autoimmune illnesses liek rheumatoid arthritis and lupus, with antibiotics.
Finally, resistance has not been a problem. Twice my daughter has had a respiratory infection that needed another antibiotic, and once I had strep that was resistant to the Biaxin I was on for Lyme. With gum surgery, I had to switch to Augmentin for a few weeks because I was developing infection on tetracycline and zithromax. In other words, bacteria such as strep, respiratory and mouth infections may develop resistance to the abx we are on, but there are other abx that can handle the situaiton, and then we go back on our usual ones.
One other thing: we have not gotten into Mepron or flagyl, as many have on this board. I am afraid of side effects, and the LLMD we use doesn't use them. He does use Plaquenil, which is mildly anti-protozoan. There is some disagreement on treating co-inffections, but I and my family are in the minority here on this issue. Considering my daughter's sensitivity, and the damage done to her already by some meds, I am very conservative.
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Just my 2 cents
In 94 ,after 7 years being mis-diagnosised and in really bad shape, I had 5&1/2 weeks IV ABX and 9 years oral follow-up . I remained 80% better on the oral abx with- and alot of suppluments.
No side efffects.
Every time I tryed to go off I relapsed. ABX gave me 9 wonderful healthy years. Just my personal story. __________
Make sure to talk everything over first with your LLMD
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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The problem is way bigger than "lyme". google Harvey and Pandemic. IMO and from reading hundreds of pubmed articles I have no doubt he is correct. It's no coincidence that we also have a epidemic of suicides,Fibro,Chronic Fatigue and on and on. My llmd kept me alive and I'm saddened that I can't post his name. He's a hero imho as is Dr J. BUT if we look at the big picture abx alone are NOT the answer for the masses. It's really not even close. More importantly the government feels the same way. They will continue to prosecute llmds and propagandize everything concerning borrelia. At the risk of getting my head chopped off I agree with the stance. If mass media publishes most disease are caused by pathogens (and borrelia is a major player) a mad rush for abx will occur. Some might make it but most will simply just get sicker as borrelia resist the abx and unleashes it's own vicious toxins.
As for me I wish someone told me when I was taking high dose IV abx about silver,vit C,oregano and other "alternatives" with proven antimicrobial properties. I most likely wouldn't still be fighting this $%@# thing if someone had. I'm also not sure why such a fuss. Taking alternative and abx is not one or the other. Can't all sides just get along
Hopefully this doesn't make me an evil person Posts: 731 | From Humble,TX | Registered: Feb 2005
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JimBoB
Unregistered
posted
Brent:
To SOME you will be evil. To others a hero, eventually, when your post has helped them. SOME are either afraid or to close minded to TRY something else. Others have tried and it didn't work for them, for one reason or another.
It is the SAME for me. SOME have been helped greatly already, others are starting a GOOD herbal protocol and "feel" better after a few days, some much better than on abx. Some are using herbs in conjunction with abx.
Take care, keep pluggin away. I am NOT cured yet either, just feel SO MUCH better than when I was on abx. But I am on heavy herbs right now, so we will see what happens a few months down the road when I start cutting back.
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