posted
So I been reading a lot about lyme since I got positive test results. And it seems to me like no one really knows what "chronic lyme " is -sure sometimes test show positive infections by specific organisms, but the labs are not reliable and its not even 100% that those specific thing on labs are culprit (some people think there is auto immune component, some thing its toxins , some - other diseases ,or various combination )
Which would be ok if there was definite proof that they act so and so and in finite amount of time you get rid of all symptoms and infections - guaranteed. Which seems to be not the case for many people
From what I read it seems that abx mostly help with symptoms ,and , sometime (if you extremelt lucky) help your own immune system to keep disease in check, which could be lyme or crapload of other obscure bacterias and parasites - and no one knows for sure what it is.
Now I was reading about specific ABXs and some of them are outright dangerous: (Fluor)quinonlones for one seem to be the cure worse than the disease.
I mean , people, don't you think you might making your condition worse? Especially with stuff like plaquenil (eye toxicity) , quinolons (all kind of bad stuff - seems like quinolones can cause stuff as bad as lyme and co-infections themeselve do)
Posts: 856 | From MA | Registered: Jul 2009
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posted
Positive test results alone should not motivate you to go on antibiotics. Lyme disease is a complex illness. An LLMD makes a clinical diagnosis, based on symptoms, personal history, and, yes, blood work including antibody testing.
Antibiotics are not fun to take. They should not taken willy nilly. But a suffering patient with a full work-up and clinical diagnosis is likely not taking the situation lightly.
Antibiotics can have nasty side effects. That's why it's important to have a competent LLMD to balance the risks and benefits of an individualized treatment course.
Some of my symptoms have gone away completely, after I was treated for bartonella for six months. My remaining symptoms are troublesome, and my progress has been slow.
However, I am better now than I was one year ago. And if I had to choose between slipping back into my previous state (before treatment) or thoughtfully continuing antibiotics, even with side effects, there's no doubt I'd choose to continue treatment.
If antibiotic treatment isn't what you want to try, there are other doctors--naturopaths and also some MDs--who will treat using herbal remedies. There are those who swear by the salt/C combo. Others use Rife machines.
Still, I think that most physicians see antibiotics as the first strategy of attack against bacterial infections--like Lyme disease.
Posts: 398 | From By the Salish Sea | Registered: Dec 2008
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
coltman wrote: I mean , people, don't you think you might making your condition worse? Especially with stuff like plaquenil (eye toxicity) , quinolons (all kind of bad stuff - seems like quinolones can cause stuff as bad as lyme and co-infections themeselve do)
NO WAY!!! I speak from personal experience.
For me, the alternative was living in horrific pain 24/7, not being able to sleep, feeling very ill and fatigued, basically bedridden and getting worse.
Difficulty swallowing, burning in feet and hands, eye pain, inability to tolerate normal room temperatures, inability to sweat, blood pressure dropping a huge amount when sitting or standing, dizzyness, depression, anxiety - that is only a partial list. There is much more but you get the picture.
What is offered for people with thess symptoms are psychiatric treatment, pain medication, sleeping pills, anti-depressants, amphetamines (to keep blood pressure from dropping too much), beta blockers (to keep pulse from getting too high), anti-anxiety pills etc. etc. etc.....
The pills that I've been taking to keep my blood pressure up so that I can sit and stand have caused pulmonary hypertension. A very serious condition in itself and likely permanent for me!!
This is how my sister is living. No treatment for the real cause of her symptoms but lots of drugs to manage her symptoms. Her doctor told her that one of the drugs has caused her bones to start crumbling. Personally I think it could be the infections because my mother is sick and her bones are a problem too. My sister has had 2 steel pins put in her legs over the past few years. She stood up and her ankle literally crumbled.
My mother has been disabled in a nursing home since her early 60's. They are in constant pain. Depressed with tons of symptoms. They are waiting to die.
If you think I'm kidding, give it some time.
Uhhhh...... I think I'll take the risk.
Living with only 30% of the pain that I had previously is worth the risk alone but add to that being able to swallow without choking, having people visit my house without them having to wear a coat even in the summer and many other improvmements and I'd take even more risks if I had to.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
You said.. "And it seems to me like no one really knows what "chronic lyme " is."
Actually, most everyone here knows exactly what it is.
It isn't a mystery but to those who have a reason not to want to know.... or need to act like they don't.
`````````````````````````````````````````````````
You said.. "I mean , people, don't you think you might making your condition worse? Especially with stuff like plaquenil (eye toxicity) , quinolons (all kind of bad stuff - seems like quinolones can cause stuff as bad as lyme and co-infections themeselve do)"
Lions and tigers and bears, oh my!
Name a drug that doesn't have potential side effects, adverse events or precautions.
I didn't think so.
If you want to get better, you do what needs to be done.
Would we all like an instant one size fits all cure, that is cheap and easy... with no side effects?
You bet we would.
But it isn't in the cards right now.
And think of it this way "people"....
Would you not treat cancer or heart disease or diabetes because the meds may produce some side effects?
Would you not eat ice cream or birthday cake because you might gain weight?
The choice is yours. Get worse with an untreated complex infectious disease.... or get better with proper meds that MIGHT cause a problem in some people.
quote: The choice is yours. Get worse with an untreated complex infectious disease.... or get better with proper meds that MIGHT cause a problem in some people.
If only it was so crystal clear.... The choice looks to me like between rock and a hard place.
Let it slowly eat whatever is left -and its not a choice right now , my symptoms becoming disabling (I have never had them interfere so severly with daily activity but now they do) . I cannot lose my current job - I will have nothing left, and I am really close to it due to worsening in past 2 month.
And trying some "treatment" -which has extremely high probability of adverse effects .All protocols been reading from LLMDs - doses are very high and for very long time .
I wouldn't be too scared if it was for a week or two. But months? Only stuff I would be comfortable with for such long time is bicillin and rocephin - only cause I know I have no adverse reaction to them and those (especially the former) are considered one of the safest abxs out there.
But stuff like plaquenil or fluorquinlones.... - I do have problems with vision, joints and tendons already, if it makes it worse, its over. I cant afford to make mistakes at this stage.
I mean I read tons of info all over the net (both patients and doctors accounts) ... Ppl become worse! That "herx" -it could be the damage from abxs , from autoimmune response ,from toxins - whatever it is , "treatment" causes it, it causes damage!
And it is not for a week , or even a month. They suffer years and do not get better! WTF of a cure is that? And you risk completely destroying that little you have left with the "treatment".
I feel I make one wrong step and its over. And what is worse I cant see any right steps! And I feel neither do those LLMDs. Who just blindly trying stuff, poking in the dark. I mean if a person does not get better after 3 month of aggressive therapy (and or relapses shortly afterwards ) isn't it the sign that you are doing something seriously wrong!
quote: Would you not treat cancer or heart disease or diabetes because the meds may produce some side effects?
Diabetes I don't know . I think if cancer has high probability of relapse therapy is not worth it . I thought about chronic disabling disease and decided that living like that is not worth it at all.
And now I seem to have it this chronic disease (question is how disabling it will become ).And already it looks like options are really not worth it .
quote: Would you not eat ice cream or birthday cake because you might gain weight?
If there was high probability I would become obese just by eating cake I wouldnt eat it . I did everything I could to be in good health (exercise ,diet) but seems all in vain now.
Posts: 856 | From MA | Registered: Jul 2009
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posted
I don't think you have done enough investigating of a) what this complex infectious cocktail is b) what it can do if progression not stopped, c) how abx can (and usually DO) stop progression and d) the fact that in many people abx bring them up to a good level of health at which they can function, e)a good % of them can actually stop abx and feel well
But in the end, if you wish to wait until all the IDSA b.....ds have given your doctor the green light to go ahead with treatment, it's your choice and only you can make that decision.
If you have bad chronic Lyme and you're scared of abx, good luck to you.
Abx saved my life, not a picnic at first but no other choice so...
Nelly
Posts: 416 | From france | Registered: Oct 2001
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MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
a very large number of people do in fact get better, completely in remission, or most of the way 'normal'. And long-term antibiotics aren't usually that damaging in most people.
-------------------- Symptom Free!!! Thank you all!!!!
luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Coltman,
Very good questions indeed! The treatments are as dangerous as the disease, it is just that once the disease has hold of you, you have to do something.
I work with integrative doctors only. My doctor is an ILADS LLMD but she also practices CAM medicine.
So when she put me on Mepron, she also increased my liver protecting supplements and prescribed leuvocaran (sp?) which protects the liver.
I eat healthy and exercise and use a FIR sauna all to keep detoxing so I can not only detox the disease but also the toxicity in the drugs.
I am functioning 100% and would forget I am even sick if it were not for all the meds and supplements I take each day.
-------------------- 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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pamoisondelune
Frequent Contributor (1K+ posts)
Member # 11846
posted
You don't have to take fluoroquinolones! At least if you don't have bartonella. I would never take them. My LLMD wouldn't prescribe them. You don't have to take Plaquenil either. I always refused Flagyl and Tindamax, and am doing all right using GSE (grapefruit seed extract) instead.
There are other safer abx. And adding herbals helped me immensely, especially Buhner herbals, and others. While taking abx, be sure to take milk thistle etc to protect your liver, and plenty of probiotics for your guts.
I also am functioning 99% and take dozens of pills 5 times a day .
After a few days off antibioitcs, I feel increasingly worse, then as a few more days pass, desperate,--- desperate! At that point i am driven to find relief--- no debates or hesitation, just get some abx somehow!!!!
You are right that the herxes from antibioitcs alone would make it probably very difficult for you to hold a normal job. The herxes can be overwhelming. I think people suffer unnecessarily from unaccompanied abx; i felt that herbals helped ameliorate the herxes; i was sorry my LLMD hadn't given me herbals too.
Maybe you can devise a superb detox program with lemon juice, polygonum, sarsaparilla, and a lot of other detox things, plus a half-dose abx protocol at first to gradually reduce your bacterial load? Some people take low-dose abx because of inability to detox well.
Some people have a genetic defect that makes them unable to detox very well,; i forget what the gene is called. People here test for it, some people have it and can't take strong abx normally. You could find out what drug protocol they use.
---Polly Polygonum
Posts: 1226 | From USA | Registered: May 2007
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gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
coltman,
i can understand how you feel as i felt the same doubts as you in the beginning. i was NOT eager, and was in disbelief as well regarding my choices of treatment.
however, the best thing you can do for yourself is to get a lyme literate doctor and start treating right away. you also need to get tested for coinfections as it is very possible you have more than just lyme.
not everyone takes those specific drugs. and yes, all drugs have side effects.
you need to read as much as possible about lyme and its treatment. it is a serious bacteria. it can only be eradicated during its reproductive cycle, which is every 3-4 weeks.
that and having coinfections (other bacteria that travel with the lyme bacteria) is mostly what prolongs a treatment course.
it is a cousin to syphilis and currently our labs, diagnosis methods and supply of lyme doctors STINK.
because lyme suppresses our immune system, other viruses can emerge, making the treatment process also more complicated.
treatment is not 'cookie cutter.' and it is not based on test results alone. some people NEVER get a positive test and they are very sick from lyme and coinfections.
so they are treated on a clinical basis (symptoms) as some other disease such as lupus, ALS, etc.
there is quite a dilemma about getting treated, and there are alot of very sick people out there without a lot of choices.
yes, our testing labs sources are very few, our lyme literate doctors are very few, and they are fighting main stream philosophies every day.
until that is resolved, we need to work with what sources we have to get better.
no one likes to take drugs long term. but if you are under the care of a good lyme doctor who is very thorough, than you have a good chance to getting to remission.
if i didnt have the opportunity to treat long term i probably wouldnt be in remission at the moment. and i fight a relapse on a daily basis.
please read this document which was published by the top lyme doctor in the USA. it is a good source of information regarding lyme and its treatment.
posted
We could've said the same about tuberculosis back in the day. "Will these antibiotics work? I dunno, How long will it take? dunno" Then deal with coughing up blood and the other nasty symptoms until death. So same here with lyme. Your options are 1. Suffer until you die OR 2. Do something that has worked and has the science to back it up.
Posts: 499 | From Indiana | Registered: Oct 2007
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D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
If you are hesitant to use antibiotics, then there are alternative treatments, but of course non of them are risk free either.
Two of the best long term treatments in my opinion, and I do not have experience with many I will not mention, are Rife frequency treatments, and low dose MMS aka Miracle Mineral Supplement.
My wife has used both, but the Rife frequency treatments have worked out the best. She originally suffered from debilitating Arthritis and various fevers, Lyme Rages, and other symptoms.
She now is 95% normal and actually seems to be improving more lately. She has been in a holding pattern for two years with no worsening or improvement. Now she appears to be improving some more.
She never had the opportunity to use antibiotics after the tick bite due to incompetent doctors.
I still believe that antibiotics are your best treatment for early Lyme treatment, but am not as convinced for a case of long term Lyme.
Basically, everyone is doing the best they can to get better. There is always a chance you will have an adverse effect from most any treatment.
I have mottled teeth from the Fluoride in water and Fluoroquinolone antibiotic use as a child. It may have contributed to my Crohn's disease also, but I have no evidence that tells me that, but they can affect the immune system.
Basiclly, most people have no serious side effects from Flouroquinolones, but no one knows in advance who will be affected.
Dan
Posts: 2919 | From Minnesota | Registered: Aug 2006
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posted
Coltman- something else you have to realize, is that the people who do get better aren't as vocal as those who are struggling.
I think you would be surprised how many people recover completely.
I understand being nervous about abx- especially the fluorquinolones!
But I just wanted to tell you not to give up yet! I think there is more hope than you realize!
Good luck
Posts: 503 | From Alberta, Canada | Registered: Jun 2009
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ping
Frequent Contributor (1K+ posts)
Member # 6974
posted
coltman - I had congenital, active Lyme for almost 50 years before being diagnosed. It caused pain and a lack of quality of life that I can never get back, not to mention the lives of family members that it took from me.
Antibiotics (abx) saved my life!!!!!! It took over five years and yes there were side effects, but I made it through, while holding down a full time job, etc., etc.
You're no doubt in somewhat of a state of shock at the moment, but do yourself a huge favor and start abx tx ASAP! You don't have to take any of the Quinalones that you're so worried about; talk to your LLMD and start easy. There's no easy way out.
Get started NOW!
ping "We are more than containers for Lyme"
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
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quote: you need to read as much as possible about lyme and its treatment. it is a serious bacteria. it can only be eradicated during its reproductive cycle, which is every 3-4 weeks.
Yeah 3-4 weeks. But then why do you have to stay for much more than that?
quote: Two of the best long term treatments in my opinion, and I do not have experience with many I will not mention, are Rife frequency treatments, and low dose MMS aka Miracle Mineral Supplement.
Thanks for sharing. But btw this is another aspect which bothers me extremely- there is so much quack like treatments around lyme that it makes whole thing suspect. I mean rife machines? Something with "miracle" in its name?
I am much more open minded now - I mean I have to. Conventional docs never bothered even looking into anything (and I had joints pain and bells palsy since mid school), I myself preferred to ignore symptoms until now .
But damn I want some evidence behind stuff which looks like pure quack. I don't believe in homeopathic stuff, nor in "miracle" supplements -as it reminds me of too familiar scammers schemes, and there is ZERO supporting evidence for them. ABX for all bad they are have scientifc and clinical evidence behind them.
I mean I suspect some of the "alternative" stuff might work -for same reason herbal remedies do work, despite little clinical research done. But its just so much noise in there ...
That whole thing is such a mess...
I read Burascano protocol, all lyme cases on Raxlen' website , lymemd blog - doesnt exactly inspire confidence in allopathic side. And the alternative hearsay on personal blogs and boards is even more controversial
Posts: 856 | From MA | Registered: Jul 2009
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D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
I do not blame you for being skeptical. I had no faith in any alternative medicine either. I made it 44 years needing little in the way of medical treatment at all.
I had no other options so I did the months of research on frequency treatments, and found a valid scientific principle at work. And if you use it once for Lyme, you will not question whether it works or not.
Miracle mineral Supplement is an unfortunate name, but if you look up the properties of the active ingredient of Chlorine Dioxide you will find that it is the most effective disinfectant known to man.
An impressive name does not make a treatment work, and neither does an unimpressive name make it bogus. It works because it has the properties or mechanism to kill bacteria.
I do not have a dog in this fight. I do not sell anything or have any reason to promote one thing over another. The bottom line is you have to treat it one way or another. Pick your poison and hope for the best.
Good Luck.
Dan
Posts: 2919 | From Minnesota | Registered: Aug 2006
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Coltmain wrote: Yeah 3-4 weeks. But then why do you have to stay for much more than that?
Copied from a previous post of mine.
Tom Grier is a Microbiologist at the University of Minnesota Medical School. Or at least that is the last I heard so I assume he is still there. He has Lyme disease and is a member here. Haven't seen him post for a long time though.
He has written several very good articles. This article is full of great info. Here is an excerpt that pertains to your example about killing bacteria.
http://www.canlyme.com/tom.html "The division time of Borrelia burgdorferi is very long. Most other pathogens such as Streptococcus, or Staphylococcus, only take 20 minutes to double, the doubling time of Borrelia burgdorferi is usually estimated to be 12-24 hours.
Since most antibiotics are cell wall agent inhibitors, they can only kill bacteria when the bacteria begins to divide and form new cell wall.(35,59-62)
This means: Since most antibiotics can only kill bacteria when they are dividing, a slow doubling time means less lethal exposure to antibiotics.
Most bacteria are killed in 10-14 days of antibiotic. To get the same amount of lethal exposure during new cell wall formation of a Lyme spirochete, the antibiotic would have to be present 24 hours a day for 1 year and six months!
Note: Antibiotics kill bacteria by binding to the bacteria's ribosomes, and interrupting the formation of cell wall proteins."
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Coltman,
Regarding quack treatments, here is what I have done and it has worked very well for me.
#1-I work only with medical doctors and they have to be integrative. In other words, trained in both allopathic and alternative medicine. It is my firm belief most do best if they combine treatments.
#2-I research everything. I frequent this website and one other that is more specific to my symptoms. I don't jump right on the latest things to come out but some brave pioneers do and I thank God for them. I watch, listen and research until I either reject the treatment as not working for others or I see it is working and I give it a try. But I never try anything without running it by my doctor first.
This has served me very well.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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posted
I remember when I took Levaquin for a couple weeks and freaked when I saw the "flox" website. I said, "not for me."
Fast forward a few months. the red blood count was through the floor and "hemoBart" was susapected. I was so tired, and could not do what I do for fun which is ride the bike and run.
I said, "I'll take my chances on the Factive thank you." I feel better now. Not fine, but better. And who knows if I will continue to improve.
You do what you have to do.
A wise man once said:
"If you try you might not win. But if you do not try you will not win."
-------------------- enjoy the day.
-jmb Posts: 208 | From Maryland | Registered: Dec 2008
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gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
coltman,
if you are so skeptical of current treatments, how do you intend to get well??
better hurry, lyme multiplies very quickly.. like Terry K states..EVERY 24 hours.
the longer you wait the harder it will be to eradicate.
lyme invades your brain and central nervous system and along with a multitude of symptoms, you can be plagued with nasty neuro symtpoms on top of all the other areas of the body it destroys.
yes, we are in a mess. its all 'we got'.
feel free to speak up and get your voice heard thru you local state representative. voices can make changes possible.
there is a thread on this board from today you can voice your opinion to your local officials.
lyme treatment SUCKS!!.. we need more doctors, better labs, and research!!
Posts: 1127 | From atlantic city, nj | Registered: May 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
i understand where you are coming from a little. 3 months ago i was treated with amoxy for 4 weeks, felt good and then developed a loss of appetite, nausea and genneral bad feelings.
the loss of appetite was terrible and i started getting terrible anxiety and depression. my llmd says it is in my brain and my stomach or maybe the mental symptoms are causing the loss of appetite.
i just started IV zithromax( ist week) and no difference.
another doctor told me the loss of appetite is from the antibiotics and if i stop them it will eventually get better and your anxiety will lift as you are so streesed about the no appetite. my only symptoms now are mental and loss of appetite.
i struggle every day with stopping the abx.
-------------------- rjf Posts: 62 | From pt pleasant nj | Registered: May 2009
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posted
The side effects from antibiotics that I experienced when my first lyme infection was treated were insignificant compared to the damage that lyme disease did to my body.
Now, I am infected for a second time. I am, indeed, suffering horrible herx's. I feel ten times worse over half the time, than before I started antibiotics. But, I was infected for two and a half years prior to my first antibiotic, this time around.
Yes, undergoing treatment for lyme can be very difficult. For me, the idea of my neuropathy progressing continually with no end point in sight, was unacceptable.
Like it was said, if you had cancer, you would consent to surgery, radiation, chemo...whatever the doctor said would be the best for your cancer. After multiple rounds of treatment, you might change your mind. Then again, you might not. Who knows?
So, talk to your doctor about your concerns. Adjust your antibiotic therapy to one you can live and work with.
I haven't been able to work for over a year, so horrible herx's don't impact me as much as they would you. I'm just happy to be doing something about this nasty neuropathy. Really happy.
-------------------- Lyme is like the flu. You can get it and recover, but you can always get it again. Posts: 607 | From (deer tick)Heaven! Angeles National Forest | Registered: Oct 2000
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LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
Come back on here in 6 months and answer your own question. We'll see if your on abx then or chose to get sicker.
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
If you get sick enough and rule out all other illnesses and spend years in that process, sick and miserable, going from doctor to doctor with no answers, well, you will finally understand why we are here.
We have all been down that road, some for weeks or months and many of us for years before we realized that Lyme Disease is indeed what is causing us to be sick. And of course by then we are "Chronically Ill".
By that time we have educated ourselves about LD. We know the truth behind the illness. And we want our lives back.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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massman
Unregistered
posted
Why such a hesitation with rife ?
everything in the world is based on energy, and that is what lyme is dealing with, isn't it ?
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quote:Originally posted by massman: Why such a hesitation with rife ?
everything in the world is based on energy, and that is what lyme is dealing with, isn't it ?
Lol. yeah in a way everything is based on energy , which could be by the way interpreted as " everything is based on information"
That doesn't mean though that using some frequency producing machine will have any effect on a complex disease. there is no studies I am aware of which specifically prove that those sort of machines have any effect whatsoever (let alone targeting specific disease such as lyme).
There was plenty of EMT studies and so far it looks like pretty far away from any practical uses for purposes of therapy
Posts: 856 | From MA | Registered: Jul 2009
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ping
Frequent Contributor (1K+ posts)
Member # 6974
posted
coltman,
With all due respect, it seems that no matter what info is being offered, you reject it.
What do you want to hear? Tell us what you want us to say to you? None of us obviously has the answer you're looking for.
Best luck with whatever you do.
ping "We are more than containers for Lyme"
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
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quote: With all due respect, it seems that no matter what info is being offered, you reject it.
I am sorry if it looks that way. I am just trying to gather information , while being skeptical. I am not skeptical about that there is some sort of disease and it causes real problems . Just the treatment/diagnosis part looks very muddy
quote: What do you want to hear? Tell us what you want us to say to you? None of us obviously has the answer you're looking for.
Well the answers I got in this thread are ok. It is some sample of individual opinons which is why I use this board .Plus I got info link from this thread (thx TerryK! ) -which was valuable.
Anyways I coldn't just stand my symptoms anymore while doing nothing . Light sensitivity is killing me lately ,everything else is bad too but somewhat manageable, aside fatigue, but that part just makes me want to claw my eyes out
So I went to urgent care , told them about positive WB , they prescribed 3 weeks of doxy. They actually told me I should feel better in 2-3 days, I hope to god I will. Cause llmd appointment is in october and I am not sure how I will make those 2.5 months without relief
Posts: 856 | From MA | Registered: Jul 2009
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D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
I am pretty sure you will feel much worse in 2-3 days but I hope they are correct.
Good Luck.
Dan
Posts: 2919 | From Minnesota | Registered: Aug 2006
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losferwrds
Unregistered
posted
Dude your right, there is very little evidence that abx are the answer, there is very little evidence any one here still has bugs in em, the testing sucks and the treatment sucks cause no one definitively know what the hell they got, co infections et al, its all antibody speculation, its a joke.
And to top it off our ilads saviours will publically humiliated at the idsa bull and pony show in 2 days.
Its a joke, if ilads abx are the cure, what the deal with salt c, rife, bionic 880, herbal, holistic on and on, if burracano wrote the bible and he is/was an activist, why did he not do clinical trials, he quit and became a vitamin salesman and very part time advocate.
gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
losferwrds,
Dr, B, he has prostate cancer. Very sad and he has help the lyme community tremendously.
He is still involved in research as much as his health allows.
Maybe his successors will get to the trials, if ever they could get past the idiots of the IDSA.
Posts: 1127 | From atlantic city, nj | Registered: May 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
That's sad about Dr. B. Sorry to hear it. Did he have cancer when he quit or just decided to close shop because he got sick of being in a hostile environment?
My LLMD seems to keep endless statistics and has a percentage for every treatment, drug used, and more. I'm surprised this doc isn't performing clinical trials honestly. However the word 'response rate' may not be precise enough for the IDSA and scientists to accept.
I think my doc had some literature stating he's applying for some grant to research Doxycycline use over 1 month, but that's all I know.
EVERY ILADS doc should be involved in clinical trials and it should be top priority to disprove the IDSA. These spiroketes just can't be impossible to find in any tissues, cartilidge, bone, etc.
I've always wondered why they didn't all pay Alan MacDonald a large salary to do exclusive research on Bb /cos. I realize he's ill now. Why the hell was a talented researcher working P/T in the basement who could've blown the lid off the IDSA's theory? That't the type of forward movement we need to win against the enemy.
Los4wrds, I don't care what treatment a person does whether for AIDS, cancer, heart surgery, etc., there's always someone touting alternative medicine as an option to conventional treatment. Even if 90% of people were helped with Abx (which is a joke percentage), the 10% remaining would knock down every door looking for help and justifiably so.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Seek wrote: EVERY ILADS doc should be involved in clinical trials and it should be top priority to disprove the IDSA. These spiroketes just can't be impossible to find in any tissues, cartilidge, bone, etc.
It costs money and time to do trials. Who will pay for them? Most if not all of the public's money for Lyme Disease studies goes to the IDSA and others of their ilk.
We are short of doctors who will treat lyme disease. People are waiting months for help as it is. Who will treat us if we have even fewer docs??
Ever heard of The Lyme and Tick-borne Diseases Research Center at the Columbia University Medical Center? It was established through a joint effort of Columbia University, Time for Lyme, Inc., and the Lyme Disease Association.
http://columbia-lyme.org/research/lymetbd_center.html The Lyme and Tick-borne Diseases Research Center was established as the first academic research center in the country to focus multidisciplinary research on chronic Lyme disease.
This came about thanks to the lyme community which of course would include the efforts of ILADS doctors.
seek wrote: These spiroketes just can't be impossible to find in any tissues, cartilidge, bone, etc.
There is irrefutable proof that they survive in the tissue after aggressive abx therapy. The CDC knows it already as does the IDSA.
Yes, Dr. B. has had cancer for awhile. Last I heard he was working on a database which was to contain information to help lyme doctors treat us. He is a dedicated lyme doctor who cares about the lyme community.
LOS wrote: he quit and became a vitamin salesman and very part time advocate.
You should educate yourself before making judgements like these. Learn a little about the history of the Lyme disease community/movement.
Dr. B. is a well loved and respected doctor who has put himself on the line countless times for the lyme community.
Casting aspersions on one of the few doctors in the world who have put themselves out there to help people in our position seems like a very unwise move.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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ukcarry
Frequent Contributor (1K+ posts)
Member # 18147
posted
I can understand your reaction, Coltman, but until something better comes along, abx are the first line of defence.
There are a lot to choose from and you don't HAVE to take one that you are uncomfortable with.
Many seem to improve with long doses of amoxiciilin or doxycycline rather than rotations.
Depending on which co-infections you have [or not], you could choose a milder abx or go for herbal treatments for that part.
I think it is important to choose your LLMD carefully and discuss your concerns with him/her.
Having said this, taking the abx is often only part of what you do.
It may serve you well to be careful with how you phrase your doubts.
I used to have the luxury of doubting and dimissing radical claims.
Then I found out I have Lyme, and now I need to go against popular opinion to get any treatment.
I've learned that if someone uses a treatment that I for any reason don't care for, I simply wish them well and leave it at that.
There is no need to put others on the defense.
For the most (if not TOTAL) part, people hear do research and weigh the pros and cons of their chosen treatment.
Don't think that we all mindlessly down tons of antibiotics without first carefully considering our options.
Good luck to you and everyone else with their chosen treatment.
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
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