posted
I was just looking around on the internet and found this sad story about a young woman horse-rider who talks about her battle with lyme- and her treatment plans with Dr. H in NY.
Does anyone else here think that mistakes were made in her case? Or that she was re-infected? because this case sounds about as bad as I can immagine and quite frankly I think she might have been better off taking no Abx at all or at least low doses. Looking forward to thoughts on this? thanks, JL
Posts: 268 | From new york city | Registered: May 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I personally believe 18 months is just too long to be on Abx. Especially on powerful ones. There's some point where one may have to say "I'm not winning" with this method. The costs must have been astronomical.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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quote:Originally posted by seekhelp: I personally believe 18 months is just too long to be on Abx. Especially on powerful ones. There's some point where one may have to say "I'm not winning" with this method. The costs must have been astronomical.
Actually its much more than 18 months, the first round was 18 months and the second round was 18 months and still counting, so thats 36 months- 3 years.
Maybe this is why I hear that Dr. H now tries to only use 6 months of abx with herbals later. Boy I feel terrible for this woman. Though again I do wonder if see got re-infected. JL
Posts: 268 | From new york city | Registered: May 2008
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
you do not know much of the tenacity of this pathogen if you think 18 months is too long to be on abx.
what is the alternative? let the patient rot in bed?
how long have you two been sick and what is the level of your functionality?
i find it so amusing when people knock long term abx treatment citing it is immunosuppressive and can result in disastrous outcomes, but again, what is the alternative?
long term abx have been shown to be one of the only things that DO help chronic lyme sufferers.
it is easy to stand on one side of the fence and comment on people who are on the other side
one day (or god willing you wont) you might find yourself on THAT person's side of the fence, and faced with the option of being bedridden or taking high doses or oral or iv abx i think the decision you would make would be clear.
granted, she may not have been treated perfectly and this could have complicated things for her, but no one single patient has a perfect course of treatment once he/she has become chronic.
think about it
as far as dr h and other llmds only uding 6 month of abx then herbals or trying to, this simply nis just not true.
and as far as feeling bad for "her", you mine as well feel bad for many many people on here and else where alike, because there are thousands if not tens of thousands just like her and equally as sick as her.
most likely you are fortunate to not be incapacitated by this illness thus the assumption that six months of abx are a terrible idea.
unfortunately life without abx for many of us is a MUCH grimmer picture than possible immunosuppression from them.
cheers
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
"and as far as feeling bad for "her", you mine as well feel bad for many many people on here and else where alike, because there are thousands if not tens of thousands just like her and equally as sick as her."
Please do not put words in my mouth sir. I feel bad for each any every one of us.
I have been fairly incapacitated by lyme for about 7 years myself- though I have few neuro symtoms and I can walk about a mile a day- but cannot work or do anything strenuous at all.
But to be honest having not been on abx yet- I was not diagnosed until a year ago, I am seriously thinking about herbal or other treatment. I am wary of abx for those of us who are still semi-functional with few neuro symptoms.
For those that have more severe lyme related problems I of course think all options need to be on the table. However I think some may benefit from lower doses of abx. thanks, JL
Posts: 268 | From new york city | Registered: May 2008
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quote:Originally posted by djf2005: you do not know much of the tenacity of this pathogen if you think 18 months is too long to be on abx.
what is the alternative? let the patient rot in bed?
I took abx nonstop for 4 yrs. I've now been off abx for 4 yrs.
< I didn't read the story. >
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
That's actually a typical everyday story of many Lyme Disease patients.
Dr. Horowitz followed the correct protocol, and the treatment isn't unsuccessful until the person stops treating and gives up, dies, or the physician ends treatment prematurely or doesn't take into account the complexity of the illness.
Many patients on here have heard me say how long it took for me to see some improvement. 3 1/2 years of antibiotics, including IV. Even then, I got better, but I didn't get well. Was my treatment unsuccessful? No, it's simply not over, that's all.
I'm only at 40% functional on my best days. Compared to nearly 7 years ago, I'm on top of the world. Death was a certainty if I had not indulged in massive amounts of antibiotics.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I must say the reading was difficult due to the small letters and form.
However, I don't see the story as unsuccessful.
While progress has been slow, it has been progress.
The unsuccessful part of this story is the complete failure
Of the medical community to recognize Lyme disease.
Think of where both riders could have been now,
If properly diagnosed earlier on.
What is a "mega" dose?
Is it slightly more than the average dose?
Double? Triple?
While I must admit that I am still treating two years in on antibiotics,
There is no doubt in my mind that I am better.
Fully functional yet? No.
However, a heck of a lot closer to "normal" than I've ever been.
I don't advocate my treatment plan to or for anyone else.
We all march to the beat of a different drum.
What works for me may not work for the next one.
How will I measure success?
Well remission would be great.
However, if I get even close to that I will be content.
Again my concern is that it isn't the treatment...
It is the failure of the medical community as a whole
To properly diagnose and treat Lyme and/or co-infections.
Also not mentioned is the treatment for the "other" diagnosis'.
How do you know that "mega" doses of steroids weren't used?
I feel the tone of this article to actually be encouraging.
Especially helpful to others who may be experiencing the same.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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ByronSBell 2007
Unregistered
posted
More information is needed...
After a skim over the story I didn't see much or any talk about:
IV heparin Cyst Busters Diets co-infections hormones antibiotics used doses any potential viruses
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I'm not looking to start wars or compare my situation to others on this forum. That's not right.
Derek, well let's say my functionality isn't too good in my eyes. If you consider being on disability to be OK, not being able to do routine housework, take care of your daughter, drive places, etc. OK, then yes I'm good. Unfortunately, I don't!
But, I do appreciate I have a couple days a month where I can function at 30% of what I was. I'd do anything to be 100% again.
Maybe I read the article incorrectly. I got the impression the person wasn't seeing much progress. The difference maybe is in someone having a clinical vs. solid diagnosis proven with lab tests (yes I know rare).
IF I saw consistent improvement, IF I know Lyme is what I'm fighting 100%, then I'll go full guns. I'm not going to pretend to know what I would do in others' shoes as I can't walk in my own the last year!
At this point in time, I'd opt to try alternative treatments such as rifing, herbs, and certainly the Bionic 880 before spending $100k on Abx. Everyone's opinion will vary.
quote:Originally posted by djf2005: you do not know much of the tenacity of this pathogen if you think 18 months is too long to be on abx.
what is the alternative? let the patient rot in bed?
how long have you two been sick and what is the level of your functionality?
i find it so amusing when people knock long term abx treatment citing it is immunosuppressive and can result in disastrous outcomes, but again, what is the alternative?
long term abx have been shown to be one of the only things that DO help chronic lyme sufferers.
it is easy to stand on one side of the fence and comment on people who are on the other side
one day (or god willing you wont) you might find yourself on THAT person's side of the fence, and faced with the option of being bedridden or taking high doses or oral or iv abx i think the decision you would make would be clear.
granted, she may not have been treated perfectly and this could have complicated things for her, but no one single patient has a perfect course of treatment once he/she has become chronic.
think about it
as far as dr h and other llmds only uding 6 month of abx then herbals or trying to, this simply nis just not true.
and as far as feeling bad for "her", you mine as well feel bad for many many people on here and else where alike, because there are thousands if not tens of thousands just like her and equally as sick as her.
most likely you are fortunate to not be incapacitated by this illness thus the assumption that six months of abx are a terrible idea.
unfortunately life without abx for many of us is a MUCH grimmer picture than possible immunosuppression from them.
cheers
derek
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I wanted to say I'm happy to hear you've made some great strides, even if it's not the whole way. That must be a great feeling. You deserve it as well as others who commit theirselves to fighting this Lyme war.
quote:Originally posted by METALLlC BLUE: That's actually a typical everyday story of many Lyme Disease patients.
Dr. Horowitz followed the correct protocol, and the treatment isn't unsuccessful until the person stops treating and gives up, dies, or the physician ends treatment prematurely or doesn't take into account the complexity of the illness.
Many patients on here have heard me say how long it took for me to see some improvement. 3 1/2 years of antibiotics, including IV. Even then, I got better, but I didn't get well. Was my treatment unsuccessful? No, it's simply not over, that's all.
I'm only at 40% functional on my best days. Compared to nearly 7 years ago, I'm on top of the world. Death was a certainty if I had not indulged in massive amounts of antibiotics.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
The park ranger in Under Our Skin said that he made his most progress in his third year of antibiotics and if he had stopped short he wouldn't have improved the way he did.
Posts: 984 | From San Diego | Registered: Nov 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
As G said.. everyone marches to the beat of a different drummer.
That said...
The quote above... "At this point in time, I'd opt to try alternative treatments such as rifing, herbs, and certainly the Bionic 880 before spending $100k on Abx."
To note- After 20 plus years and thousands and thousands of patients...
I can say I've never seen anyone recover successfully from Lyme, et al unless they were on antibiotics at some point.
Please don't toss out that option for yourself. It is sad to see the destruction that can be caused by a delay in proper treatment.
Every patient I've seen that went "au natural" because they had a negative "thing" about antibiotics... ended up failing treatment and/or relapsing (some to the point of no return)... and eventually had to take antibiotics. Sadly, some died.
luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Whether you choose abx, alternative or a combination of both, you have to treat your body aside from the bugs.
Your body is the ultimate healer and it cannot function without proper nutrition. A healthy person can get by on minimal healthy nutrition for a time. But we sick people must take nutrition extremely serious. Our bodies are not functioning normally.
Dr Richard Blaylock, a neurosurgeon, says inflammation is behind all illness. Causes of inflammation are:
infections toxins bad diet stress
There are foods that cause inflammation such as red meat, sugar, food additives and preservatives and there are foods that stop inflammation such as cruciferous vegetables and low sugar fruits.
It is so serious and so many of you shrug it off as not important. If you want to get well, you need to heal on the cellular level.
So, many of you have taken abx for years and you are at 30 to 40% functionality? And that seems good to you?
3 yrs ago when I first became ill, it only took 5 mths for me to become completely housebound. I had to quit my job.
I was diagnosed late stage lyme right away and the first doctor placed me on homeopathy. He was focused on killing lyme and coinfections. What he didn't address was my incredibly toxic state. The homeopathy was very effective at killing the bugs and I became even more toxic. Hence my rapid digression and descent into rheumatoid arthritis. Aggressive, severe, crippling RA.
By the time I was diagnosed RA (5 mths into tx) it was in every joint of my body except my hips and spine. I was so sick I felt I could die at any time.
I found a diet connection to RA and tried a vegan diet for 2 weeks. 50% improvement in inflammation and pain. Based upon this, I rejected the rheumatologist's recommendation of methotrexate (a chemotherapy drug used for RA by suppressing the immune system). I did convince the Rheumy to give me low dose minocycline which is an old RA treatment and would not be contraindicated to my bacterial infection.
I went in search of a doctor who would help me test for, identify and treat suspected causes of RA. Rheumatologists will not do any of this. They will only put you on immune suppressing drugs which they admit will only slow down the disease.
I found a wonderful medical doctor who advanced his training into natural medicine. This doctor did not prescribe one single antibiotic for me, but he saved my life. He saved my life and gave me back a life by detoxifying me and building up my weak areas with supplementation. He tested me for food allergies and we eliminated them from my diet. He helped me establish a healthy diet that could help me heal.
One year later, I was functioning at 90%. At this point, I was finally able to get into a rheumatologist who is ILADS LLMD. I have been working with her now for 1 yr. She does all my first doctor does plus she uses medications. Right away she found H. Pylori and we treated that with antibiotics. Finally, my leaky gut was healed. I tested positive for babesia, C. Pneumoniae, EBV, mycoplasmas, H. Pylori, QFever. I was a bacteria factory and needed some medications.
She has me on a few meds and a lot of supplements. The ones I can feel help are Vit D3 5000 IU daily (Vit D has actually caused my herboden's nodules which are deformities on my finger joints to shrink rapidly) Vit C keeps my blood pressure down, glutathione suppositories I will take for life. I have no joint pain anymore.
Today I am functioning at 100%. Yep. 100%. Diet remains crucial to my success. Eat your junkfood and pop your pills and believe the best you can achieve is 30 to 40% if you like, or dump the junkfood and eat really nutritiously and watch your percentages soar.
This ain't no bull. This is my true and actual experience and it is backed by tons of medical research.
-------------------- 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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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Dr B--the famous one of Long Island now retired--sent this email to a doctor friend of mine. This should show you why some people get better and some don't. It is a very confusing picture and that from lyme alone let alone the coinfections and genetic variations of hosts/victims. Something better than abx needs to be found as Dr. L wrote in an essay in 1993. Abx are not the answer if you have to take them for years as a significant portion of the population gets really ill on them with serious side effects. The bug *has* to be interrupted either with targeted double or triple abx therapy that is either pulsed or short-term, or some other add-in drug that helps disrupt its life cycle, rendering abx much more effective. The current state of affairs of lyme treatment is MISERABLE and PATHETIC.
Here's the email:
"The divergence in claims concerning chronic Lyme disease has basis in science, as recent research has revealed.
There are the two types or subsets of Lyme disease. As documented in pages 342 - 344 of P. Weintraub's book, based on recent research by Stonybrook researcher Gan Qui, there appear to be two different types of disease caused by two different acting organisms.
The first is a short term disease which manifests a skin rash, divides by cloning, and is a fairly short cure. The second is a chronic disease, spreads throughout the body, disseminates into organs, brain and bone, and is differentiated from the first by division by sexual reproduction, utilizing genetic exchange. Of the TWENTY strains recently found on the East Coast of the continental USA by Qui, there appear to be 10 strains which do not cause disease, and six strains which cause only a rash, indicating a short=term, easily cured disease picture.
However, researchers found four strains of the long term and invasive disease - the most virulent of the chronic strains apparently the B-31, originally found in Block Island and currently found widespread in Europe and the USA. This research supports the long-held ideas that Lyme disease can be a chronic, disseminated disease requiring longer term treatment.
Although more work needs to be done in this area of differentiating between the two subsets of disease, for now, physicians need to be aware that there are two distinct subsets of Lyme disease with very different presentations, therefore, a wide range of treatment is appropriate and should not be artificially limited by academic physicians who are unaware of the most recent research on disease strains."
Posts: 2276 | From united states | Registered: Jun 2004
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
OMG, there is NO WAY that I can read the attached article.....the words are so small.
That being said, I agree with luvstoride. An integrated approach with healing coming from a cellular level is so very important.
And as Derek has said and TC, have you got a better solution than abx for late diseminated disease?
Until some miracle is found, I choose to treat with what we have available, rather than sit and let this disease process have it's way with me.
It is well known that late disease takes a long time to respond to abx in almost all cases.
Rife while useful, can also take YEARS to lower the Bb load. It hits Bb at only one window of opportunity per month, a 27-28 day cycle usually.
So, there just isn't a quick fix available. Period. Praying for the day that the medical community opens it's eyes and finds a solution for us.
Best to all of us, Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
ignoring the abx route early on because they dont sound appealing to you is not only not prudent, its just silly.
at least give them a try.
the earlier you hit it the better as tincup said.
you can wait and rife and herbalize etc etc but all the while it grows stronger and could have been beat down a bit by some good abx combos.
NO, abx are not a cure. YES, they are the best weve got SO FAR.
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
If I read the article correctly it was about 2 different people. They each trained under the same rider is how the 2nd one who wrote the article figured out her diagnosis.
OxygenBabe,
Thanks so much for posting that info from Dr B. I had always had 2 theories regarding the rash -- either that it was caused by certain strains or that it only happened when a person's immune system was very active.
This info explains why many like hubby who have the most severe neuro symptoms never had a rash.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Personally, I've been taking abx nonstop for over a year now. I'm back to about 80% now, 90% some days. I've gone from not being able to get off the couch most days to playing ice hockey, so, it seems to be working.
I seem to be one of very few people here that hadn't noticed a difference on different diets. I tried all the recommendations of things to cut out (for yeast), I've tried vegan. I just don't see any real difference. How long do you usually stick with these diet plans before you feel any better?
Posts: 306 | From Brownsville, PA | Registered: Jul 2007
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posted
I'm with Byron on this. If we don't know the whole story we shouldn't let it get us down. This person could've had Bartonella the whole time and never treated what was causing her symptoms. Same thing with any other co-infection.
Posts: 499 | From Indiana | Registered: Oct 2007
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quote:Originally posted by pryorka: I'm with Byron on this. If we don't know the whole story we shouldn't let it get us down. This person could've had Bartonella the whole time and never treated what was causing her symptoms. Same thing with any other co-infection.
Thats exactly what I was saying. I know people can and do get well. But sometimes I think people fall through the cracks and moreover are MOVED ALONG too fast through treatment. JL
Posts: 268 | From new york city | Registered: May 2008
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
newbies...at the bottom of each post you can see how many each has posted...that can give you an idea of how long they have been dealing with lyme+ and how much experience they have...
it took 3 yrs high dose abx for me to be able to keep working and get my kids thru college...
my gi tract is messed up now...but i was able to work long enough to get a pension and get the kids independent. now i work on me. before the abx i slept 23 hours a day and couldn't pick up my toddlers
there are decisions to make in this disease. but in my 20 yrs of dealing with it and going to over 10 support groups now i have seen many, many more people who chose not to do abx first and chose to rely on alt stuff go downhill. some are the saddest stories i know. they will never be able to get better.
i'm not sure if any of us will ever get back to 100%-with the stories i know about...i'm happy to get a few more years without dementia or seizures. my whole plan for the future has changed... and after 10 years without my horses i leased a mare in july and august and rode every other day...intro level stuff ...but it actually helped me continue with my tx. a continuation of pt---quad strenght after knee replacement. i guess it was really therapeutic riding...but that little mare improved in those two months so i must have done something.
doing something more than i did yesterday is progress for me.
i wonder where that was published. it's a pretty narrow view of lyme+
if you do only alternative-from what i have seen first hand ( and heard from the dr b) you really need to make major lifestyle changes and do it in an organized, intelligent, and disciplined way. i think i know of one person it worked for-she was allergic to every abx. really allergic---not just "having problems tolerating them."
there is something to be said for experience...both in patients and llmds
and as far as the story goes: i got sick in the same area. i rode and showed dressage in the same area. i had to break up my farm and sell or give away all my horses tho-as soon as i started tx and herxing. but i was too sick to ride. i'm tuff...but there was no way i could do chores let alone train while i was herxing.
it doesn't sound like either rider took tx seriously. treating lyme is not cookbook. you have to educate yourself. and work with your doc.
and dr h is one of the best-he would have covered co-infections. but-a year is just getting started...and all llmds do it a little differently, so if things are not going the way you think they should after a year...try someone else.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
lpkayak said:
i'm not sure if any of us will ever get back to 100%-with the stories i know about...i'm happy to get a few more years without dementia or seizures. my whole plan for the future has changed... and after 10 years without my horses i leased a mare in july and august and rode every other day...intro level stuff ...but it actually helped me continue with my tx. a continuation of pt---quad strenght after knee replacement. i guess it was really therapeutic riding...but that little mare improved in those two months so i must have done something.
lp, go back and read my post. I am 100% well and I am riding and caring for my 3 horses.
ladycakes, if leaky gut is at the core of your problems then switching to a vegan (least inflammatory) diet for just 2 weeks will yield SIGNIFICANT results. If you do not see significant improvement, then you may not have leaky gut at the core of your health issues. See the link regarding leaky gut.
However, that does not mean you do not have to eat a nutrient rich diet and skip the junkfood. Even if you do not have leaky gut, food is the only nutritional source your body has available to it. If you put poisonous junk in your body, then your body can't heal itself from lyme or anything else. As for how long do you have to eat healthy? For as long as you wish to live and regain your health.
-------------------- 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
luvs-thank you. i printed out your post. i have been going thru a tuff patch and can't read all the posts. thank you again. you will be my new guru---no more 30-40% for me!
wed morning i am meeting with some dressage people who live close to me and have two horses that need riding...who knows???
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
I did read the article, and I have to agree with those who did NOT see it as a tale of Lyme treatment failure.
It's a tale of NOT DONE YET and of EXPECTING TOO MUCH TOO SOON and of NOT ADDRESSING BIOFILM with Heparin or proteolytic enzymes during treatment.
And while I'm on my soapbox, I have some comments on antibiotic paranoia.
It has become socially fashionable to consider antibiotics as evil and dangerous.
Yes, I acknowledge that antibiotics are overused in food production and that overuse leads to antibiotic resistance in bacteria. We don't need that!
Yes, I acknowledge that some doctors over-prescribe antibiotics and that also leads to the development of antibiotic resistance in bacteria.
I also acknowledge that a great many doctors fiddle-fart around with an infection and under-prescribe antibiotics (too low a dosage/not a long enough course).
I also acknowledge that most doctors don't prescribe an appropriate combination of antibiotics for an infection, a course of action which should result in more effective treatment and avoid development of antibiotic resistance.
I also acknowledge that some patients don't take their prescribed antibiotics as directed or don't even finish the course. That also leads to development of antibiotic resistance.
I also acknowledge that antibiotics kill your good gut flora and render you vulnerable to yeast overgrowth. Probiotics are available to replace good gut bugs, and effective antifungals are available OTC to fight yeast.
I also acknowledge that many doctors prescribe bacteriostatic drugs instead of bacteriocidal drugs when they should be treating the infection with a more serious plan of attack.
Guess what?! Doctors are affected by what's socially fashionable too, just like the rest of society. It affects how they treat.
Dead bugs don't mutate! Infections should be treated seriously---bacteriocidal antibiotics, high enough doses, long enough courses, combinations of antibiotics that get at the bugs in different ways.
As I watch my husband trip because his foot is dragging and his balance is off-kilter, fall, struggle to get back up, become disoriented in familiar places, his inability to read a map anymore, his inability to figure a tip in a restaurant, coughing and strangling from impaired swallowing, conked out from fatigue, I'm struck with wonder that so many of the same people who have no doubt that those with TB or syphilis certainly need heavy-duty antibiotics for a long time are some of the same ones who are loath to consider the same to be necessary for Lyme disease.
These must be the same ones who think they need fruit and vegetables in their hair products, assuming they are using the best hair goop because they are so "natural."
Gimme a break!!!!
This is a serious disease that can kill, directly or indirectly...much less cripple, incapacitate, or turn a mind to mush.
So please, if you are averse to the use of antibiotics, ask yourself why...is it based on something concrete that is applicable and appropriate to this situation, or is it based on a currently fashionable attitude founded on non-germaine antibiotic abuse?
What are they going to use if they get pneumonia or a life-threatening systemic bacterial infection?
What are they going to use for the puss-pocket that comes with a root canal?
What if their kid picks up MRSA at the school gym?
Please get educated about antibiotics (broadly and specifically), check interactions, take antifungal precautions seriously, take sufficient probiotics religiously (don't be cheap and skimp).
Stepping down from my soapbox now. Thanks for "listening," Joyce
-------------------- Dallas caregiver for husband Steve who has Bb, Cpn, Mpn, EBV, CMV, other Herpes family viruses Posts: 51 | From Dallas, TX | Registered: May 2008
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Antibiotics are not always the answer. For those whose infections are susceptible and who can tolerate the antibiotics without serious side effects, yes. For many others, no. Such as fungal balls, systemic yeast that makes them seriously ill, sepsis, and other major toxic side effects leading to a severe worsening of their condition from overall toxicity.
In addition, there is the problem of bacterial persisters:
To quote: "Chronic persisting infection not yielding to antibiotic treatment presents a dilemma for the patient, the physician, and for insurance companies that are contractually obliged to pay for medically necessary treatment (34). The solution is not denial of the reality of patient illness or imposition of arbitrary restrictions on allowable durations of treatment but the design of more effective and less costly treatments that can keep the patients well. Aside from prevention of the illness in the first place, methods achieving sure cure for those already infected must be developed. Antibiotics may not be the answer. Rather, application of new techniques of molecular biology to interfere irreversibly with key metabolic or reproductive processes of the bacterium wherever it may be found in the body, including intracellular sites, may provide more effective targeted therapy in the future (2, 13, 27, 31, 35)."
He's right.
Posts: 2276 | From united states | Registered: Jun 2004
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Peacesoul
Unregistered
posted
quote:Originally posted by lpkayak: newbies...at the bottom of each post you can see how many each has posted...that can give you an idea of how long they have been dealing with lyme+ and how much experience they have...
There are MANY other lyme sources on the net for lyme. Lymenet is not the only source.
A persons post count on lymenet has ZERO relevance to their experience with lyme.
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Peacesoul
Unregistered
posted
My opinion..long term abx are not the answer. If anyone was "cured" from lyme on them (which no one has), it's because they have also detoxed, changed their diets and slowed down giving their immune systems a change to fight.
I'm one of the people who got well off abx. When I was on abx, I was sick and in bed. It was 5 months of hell. Then I decided to take charge and strengthen my body with sups, diet, exercise and therapy. I'm now 90% functional. I work out 4 days a week and do more than I did before I was sick.
Keep in mind, you're taking high doses of very serious meds for an illness that we really don't even know much about. My LLMD has lyme and her Dr is Dr H. Dr H is an advocate of alternative therapies as is my LLMD.
There is NO conclusive tests for lyme and dr's are making clinic dx alone. That's not enough of an answer for me to take high doses of 3 or 4 diff abx for years. Abx were not made to take for years.
If a dr told me I MAY have cancer so let's do chemo just in case, well, no thanks!
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Peacesoul
Unregistered
posted
Luvs2ride, I agree with your posts 100%. You are bang on, but here's the thing, most people don't want to have to work to get well.
Most people are looking for the quick fix, the magic pill to make them all better.
Getting well involves as much work as anything else worthwhile.
Obese people don't want to work out, they would rather take a diet pill.
Making the body strong with diet change, detoxing and just getting healthy is a lot of work.
quote:Originally posted by djf2005: i find it so amusing when people knock long term abx treatment citing it is immunosuppressive and can result in disastrous outcomes, but again, what is the alternative?
long term abx have been shown to be one of the only things that DO help chronic lyme sufferers.
You shouldn't find it amusing. You should take note on how others got well. Abx do supress the immune system?! The alternative is to build the immune system.
I was not helped my abx but by changing my entire way of living and I am/was a chronic lyme sufferer. So I guess abx are not the ONLY thing
What I find amusing is how little knowledge we have of this illness and how little proof there is of anything and how people come on to sites and declare they are experts.
My LLMd ASSUMED I had bart, but there is no real test. She assumed I had babs cause I had night sweats so she put me on intense cocktails of meds. Back then, I was too naive and uneducated about lyme to know any better. I took them, got more sick and stopped.
My night sweats were perimenopause and my anxiety well it just that, anxiety. My anxiety is pretty much gone now from cognative therapy and "alternative" therapies
quote:Originally posted by luvs2ride: Your body is the ultimate healer and it cannot function without proper nutrition. A healthy person can get by on minimal healthy nutrition for a time. But we sick people must take nutrition extremely serious. Our bodies are not functioning normally.
Causes of inflammation are:
infections toxins bad diet stress
There are foods that cause inflammation such as red meat, sugar, food additives and preservatives and there are foods that stop inflammation such as cruciferous vegetables and low sugar fruits.
It is so serious and so many of you shrug it off as not important. If you want to get well, you need to heal on the cellular level.
Amen to almost everything you said.
Add this to your list: sleep, water and exercise.
Water and sleep probably occupy the top two spots in the way they impact your health. Water can easily be had. But it can be difficult to obtain quality sleep once you've gotten ill. There are other ways to achieve the health promoting aspects of sleep, e.g. hypnosis, meditation. It also makes sense to use all the [natural] tricks in the book to actually get some real sleep.
Whether a specific food causes inflammation or not depends on your nutritional type. Qualitatively speaking, beef is not supposed to cause much inflammation, if any, in a person who inherently needs a predominantly protein based diet. However, an apple would cause inflammation in that person. The opposite would be true for a person who needs a predominantly carb based diet.
I totally agree that people ignore diet. Even most people who say they live healthy are ignoring diet. I suspect the same is true for Lyme sufferers.
There is this generic belief among people that as long as you eat according to the food pyramid, you're eating healthy. Or that as long as you avoid refined grain/sugar products, you're doing good. Granted, doing any of these is a vast improvement over the SAD diet. But it's only a small step towards eating healthy.
The food pyramid is littered with bad foods for certain types of people. The food pyramid is heavily grain and dairy based. This may work for a subset of people.
It surely would help if they made the food pyramid more of a 40% carb, 40% protein and 20% fat thingy. Undoubtedly this would benefit a larger portion of the population than the 70% carb, 20% protein and 10% fat that is roughly being recommended in the pyramid's present form.
It's no wonder people are overweight and have healthy problems. It is only but a minority who needs this amount of carbs. The average person needs roughly an equal amount of carbs and protein.
Since there are so many sick people in the US today, I can only imagine how many of these people's health problems would improve if they started eating a nutritious balanced diet. I'm theorizing that those who eat the SAD diet and who are the most sick are not unlikely to actually be protein types. But people generally do not want to change their diets. They can not believe that diet could be that important to their health. Afterall, it's just food.
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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Peacesoul
Unregistered
posted
Amen Michael
There is also something called the KETO diet. I follow it for bodybuiling purposes but the diet was designed for epilepsy. Kids on the keto diet report less seizures.
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quote:Originally posted by Peacesoul: Luvs2ride, I agree with your posts 100%. You are bang on, but here's the thing, most people don't want to have to work to get well.
Most people are looking for the quick fix, the magic pill to make them all better.
Getting well involves as much work as anything else worthwhile.
Obese people don't want to work out, they would rather take a diet pill.
Making the body strong with diet change, detoxing and just getting healthy is a lot of work.
For me, it was worth it!
Well said.
Figuring out what is healthy for you, researching foods, buying it, preparing it and even eating it is a non-trivial and time consuming issue.
Add to this the issues of detoxing, drinking good water, spending more time sleeping and even creating an environment to promote quality sleep and then of course exercising...wow, now we're talking about a lot of weekly hours here.
It boils down to priorities and the willpower to implement radical changes in your life. But most importantly it boils down to making the decision to take charge of your own health and to let go of the in-grown western obsession with doctors and pills to address health concerns.
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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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
What about the people that followed a PERFECT, very strict anti-inflammation diet, lifestyle changes, drink plenty of water, get sun, etc for a long time before touching any antibiotics or prescription drugs, and didn't improve at all?
I got very sick very suddenly after playing lacrosse in PA.....didn't get a diagnosis until 9 months later but did all these lifestyle changes starting soon after i crashed.
I saw a "healing" nutritionist. I didn't consume refined anything. Ever. Everything fresh fresh fresh...vegetables, whole grains, and only certain fruits, with chicken a couple times a week. Walked when I could (trust me, i couldn't), sat in the sun, got massages, etc.
I was not like luvs2ride who got to 90% by changing my lifestyle....I didn't even get 1% better with lifestyle changes. Not a single friggin percent. Just got worse.
I am now on lots and lots of drugs. I am not guessing I have tick diseases, I KNOW I do, they all showed up in bloodwork, IgM or "present infection." The meds have brought me from 5% to 40% or more at my best.
So does that mean that NOW I'm supposed to adopt the diet? You can see why I have little faith in it. I have taken breaks from the medicines where I lived a healthy lifestyle as well, thinking I just needed to "build my body up" and it never works.
So now if I do the diet will it actually make a difference? Is it just that you have to COMBINE the diet with the pills?
Thanks in advance for any advice.
Posts: 4590 | From Midwest | Registered: Jun 2008
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
im sorry if you dont think i should find certain things amusing, but, i am after all a body to my own self.
as far as abx being the "only" proven method for healing, perhaps you should re read what i wrote.
i think i said they are "one" of the "only" ways which is proven to work.
everyone is uniquely different and no set protocol, abx combo, etc etc is going to work for everyone.
that being said, ive yet to speak to one person that is well now and that did not take abx.
you all say that 'they did not help" yet you took them then so how could you possibly know the difference?
once one's body becomes so compromised with lyme and other active infections there becomes an urgent need to eliminate or lower the infection load by whatever means possible so that the human immune system can come back online.
whether that is abx, rife, 880, WHATEVER, it has to be done.
then begins the argous process of balancing the rest of what is wrong with the body such as adrenals, metal toxicity, TSH, on and on it goes.
lyme is not the only reason we are sick, it is merely the straw that broke our already stressed immune systems.
i am not advocating the SOLE use of abx. i am stating that the world's best llmds have the MOST success with multiple combos of aggressive abx therapy for long periods of time while SIMULTANEOUSLY addressing all the aforementioned things that can possibly go wrong (and as i have said before no i did not mention everything that needs to be address as there are many thing and everyone is different)
again, i find it amusing, ironic, sad, whatever you want to call it that newbies come onto LN and are basically getting the idea of abx dont work into their impressionable heads, freaking out after not seeing a + result from 2 months therapy, and throwing the towel in!
no good peoples...
this is a marathon, not a sprint.
again, ive yet to speak to anyone who is well that has not had abx as SOME part of thei regimen.
and MORE importantly, ive not spoken to anyone who was very very ill who got well without addressing the many many causative factors that contribute to our state of unwelleness...
thanks for listening, pardon me while i go stick some bicillin into my buttocks....
cheers
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
quote:Originally posted by Hoosiers51: What about the people that followed a PERFECT, very strict anti-inflammation diet, lifestyle changes, drink plenty of water, get sun, etc for a long time before touching any antibiotics or prescription drugs, and didn't improve at all?
Any specific diet you read about is never a one-size-fits-all solution. Including the anti-inflammatory diet, alkaline diet, southbeach diet, bla bla.
It is so true that "one man's food is another man's poison".
Even the advice that we should drink 8 glasses of water every day is rediculous. What we need is a SUFFFICIENT amount of GOOD water every day. To make sure we never get anywhere close to being dehydrated. Slightly overhydrated is OK.
All I can encourage you to do is to NOT follow any specific diet. It will be a hit and miss thing, most likely all misses. But you could get lucky with some particular diet.
Instead I would encourage you to find out what kind of foods are good for you. Which foods you respond well to and which you don't. Go to google and search for "metabolic typing" should get you started.
You need to find out what works for YOU. Not what works for others. The only way you'll be able to figure this out is if you invest the time in researching the issue. Noone will ever tell you, cause there's not enough money to be made on this.
-------------------- 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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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
that post about what dr b wrote was interesting
every once in awhile now, i get some new info
i'm really glad there is a solid base of long term lymies on here who can express themselves better than me...and who have seen the same thing i have over time
ps-it was liegner who got me well with abx and liegner who helped me decide when to stop them and clean up the mess
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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quote:Originally posted by Hoosiers51: What about the people that followed a PERFECT, very strict anti-inflammation diet, lifestyle changes, drink plenty of water, get sun, etc for a long time before touching any antibiotics or prescription drugs, and didn't improve at all?
I got very sick very suddenly after playing lacrosse in PA.....didn't get a diagnosis until 9 months later but did all these lifestyle changes starting soon after i crashed.
I saw a "healing" nutritionist. I didn't consume refined anything. Ever. Everything fresh fresh fresh...vegetables, whole grains, and only certain fruits, with chicken a couple times a week. Walked when I could (trust me, i couldn't), sat in the sun, got massages, etc.
I was not like luvs2ride who got to 90% by changing my lifestyle....I didn't even get 1% better with lifestyle changes. Not a single friggin percent. Just got worse.
I am now on lots and lots of drugs. I am not guessing I have tick diseases, I KNOW I do, they all showed up in bloodwork, IgM or "present infection." The meds have brought me from 5% to 40% or more at my best.
So does that mean that NOW I'm supposed to adopt the diet? You can see why I have little faith in it. I have taken breaks from the medicines where I lived a healthy lifestyle as well, thinking I just needed to "build my body up" and it never works.
So now if I do the diet will it actually make a difference? Is it just that you have to COMBINE the diet with the pills?
Thanks in advance for any advice.
Hi there, all good point but I need to ask
How long did you work on this lifestyle change before you realized it wasn't working?
Were you healthy before getting sick?
Did you also do any herbs of suppliments with the diet/lifestyle change?
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Hi!
Maybe tried the diet/lifestyle for 6 months or so. I was very very ill though, almost overnight, so could barely walk, let alone exercise.
Was extremely healthy before I crashed, 17 years old, athletic, no prescriptions, very good diet but nothing too extreme. Probably got bit by a tick a week or so before getting sick. Or, a virus triggered one of my childhood tick bites.
Wasn't really on any supplements when I was initially trying to heal because the nutritionist thought lifestyle alone would fix me. I did parsley pills. Maybe some immune stuff. That's about it.
All the doctors thought I had CFS because I live in Indiana. I had been in Eastern PA though before getting sick.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
My husband was very healthy before he became sick. He became very seriously ill overnight.
Posts: 984 | From San Diego | Registered: Nov 2006
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Hoosier,
Many of us thought we were healthy before we "crashed". This disease seemed to come on me suddenly too.
I have pointed out before that so many of us on this website were athletes before getting sick. Well, too much physical exertion weakens the immune system and I think it is no coincidence that so many of us were into extreme sports.
As for healthy diet, many people think they eat healthy but they don't. Or, as was my case, you may be eating foods that are considered healthy but for you they are poison. Some foods to which I tested allergic were some very healthy foods I ate regularly. In fact, eating a food too often is one way to develop an allergy to it. I was allergic to red bell pepper, egg whites, lettuce, milk and soy proteins. Each time I would eat one of these foods, it would generate inflammation in my gut (none of which caused me any physical pain) until finally my gut became damaged....Leaky Gut Syndrome. From LGS comes all kinds of illness as bacteria, parasites, fungi that were never meant to leave the gut entered my bloodstream.
You may not realize it, but almost everything in a package has milk and/or soy proteins. Just check it out the next time you are in a store.
Just cutting dairy and soy from my diet stopped sooooo much of my pain.
So, some of your "healthy" foods may not have been healthy for you at all. And, I only advocate working with medical doctors who have advanced their education into nutritional healing.
I also advocate working with LLMDs and many times you need two doctors to cover all the bases. I am very fortunate to have one doctor who is trained in both arenas.
-------------------- 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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