What works agains Lymes and Chronic Lymes and WHO THE HECK can you trust to know what the heck their doing and give you enough time so that you can recieve some real treatment? I know we are all responsible for our own health, but is this really a solo venture and are most doctors no more educated than me, you or whoever else has or deals with Lymes? Is it all just a big experiment? I've had it for 7 years now...recently reinfected, although the test came back negative and the doc says its a false negative and Rxs Minocy...which makes me dizzy and sick but you cant talk to him about it, you have to play "operator" with the staff and hope he gets the message...which half the time he doesnt and half the time they are looking at the wrong records...Now this is a top notch lyme guy...so who the heck do you trust? Am I really reinfected or is this the old stuff rearing it's ugly head? Do I go on meds or just ride it out? DOES ANYONE know what to do??? Do I once again venture out of the medical field and try alternative treatments that have really yet to work for me? Do I just keep trudging along with this angst, dread and sickness and accept that this is just how it is, which is what another supposed "top doc" told me to do? Sometimes I think I'm schizophrenic the way my personality changes and my moods swing and I feel like I'm going crazy. I know there are people out there who have ALOT worse problems than me...but WHY cant I find a DAMN DOC who really KNOWS what to do, does it and follows through with it? A FRUSTRATED run4fun
Posted by Lymetoo (Member # 743) on :
First of all, it's LYME, not Lyme's.
======================================== I know we are all responsible for our own health, but is this really a solo venture and are most doctors no more educated than me, you or whoever else has or deals with Lymes? If it's a regular dr [duck] then WE know more than them, in my opinion! LLMD's know more than we do, for sure!!
Is it all just a big experiment? You could say that.
I've had it for 7 years now...recently reinfected, although the test came back negative and the doc says its a false negative and Rxs Minocy...which makes me dizzy and sick but you cant talk to him about it, you have to play "operator" with the staff and hope he gets the message...which half the time he doesnt and half the time they are looking at the wrong records... It's normal to have increased or new symptoms when being treated with abx for lyme. No need to call the office in most cases. Just come here and whine a bit. We'll hold your hand!!
Now this is a top notch lyme guy...so who the heck do you trust? Trust HIM.
Am I really reinfected or is this the old stuff rearing it's ugly head? Do I go on meds or just ride it out? DOES ANYONE know what to do??? Doesn't matter if it's new or old. It needs to be treated!!!!!
Do I once again venture out of the medical field and try alternative treatments that have really yet to work for me? maybe, depends upon the treatment....but don't stop the abx!!
Do I just keep trudging along with this angst, dread and sickness and accept that this is just how it is, which is what another supposed "top doc" told me to do? Sometimes I think I'm schizophrenic the way my personality changes and my moods swing and I feel like I'm going crazy. I know there are people out there who have ALOT worse problems than me...but WHY cant I find a DAMN DOC who really KNOWS what to do, does it and follows through with it? Are you saying your dr doesn't follow through? For example?????
Maybe you need to change drs! There are plenty of good ones in your area.
You need to become more educated on this disease. READ, READ, AND READ more about Lyme disease. Have you been treated for coinfections??
I suggest you read these, highlight, and pass on to your doc.
robi
Posted by Lisianthus (Member # 6631) on :
Your question... "What does work?"
Antibiotics.
You also might want to look into being treated for babesia...
Especially if you have that "i'm going crazy feeling"
Posted by run4fun (Member # 10204) on :
Got checked for every other possibility and co-
infection...no discussion of results but for
a "I think your negative Lyme is false...take
this" And now a week on the phone passing
messages b/c I want Doxy (as doc b recommends)
and not the biaxin he wants me on. Would another
doc be any different with availability? I highly
doubt it. That's what is frustrating...I do the
research and then tell the doc what to do and
pay him for it with no chance to discuss my own
care and results. I have found no
recommendations of Biaxin usage. So...I wait
until their lunch hour is over and make yet the
third call today! UHG!!!!
Posted by chetesrus (Member # 10010) on :
run,
Just so you know, biaxin is the same as clarithromycin. Dr. B does consider it, if used along with hydroxychloroquine or amantadine.
Posted by brentb (Member # 6899) on :
run4fun, check up on the "alternatives". I strongly urge you to consider these THEN if needed add traditional abx. If you decide to do abx alone you may get well. You may also get MRSA or VRE or C difficile infections from the abx use. In that case your in deep trouble. Be very wary of anyone who states use abx and you'll be all right.
Posted by lymie tony z (Member # 5130) on :
Hey Brent...the question was asked and answered.
Don't go muddying the water with your "Steere FEAR propaganda".
MRSA and VRE...yeah if you're admitted to a hospital!
Clostridium difficule...maybe...but you can get that from drinking water in some places.
If proper pro-biotics are used even candida/yeast may be avoided.
However....as DR B states....anything is better than persistant lyme infection!
The risks Outweigh the rewards.....
zman
Posted by brentb (Member # 6899) on :
quote:Originally posted by lymie tony z: MRSA and VRE...yeah if you're admitted to a hospital!
zman
Zman your ignorance is astonishing. You may want to get educated before opening that flap of yours again.
A once-rare drug-resistant germ now appears to cause more than half of all skin infections treated in U.S. emergency rooms, say researchers who documented the superbug's startling spread in the general population.
Many victims mistakenly thought they just had spider bites that wouldn't heal, not drug-resistant staph bacteria. Only a decade ago, these germs were hardly ever seen outside hospitals and nursing homes.
Doctors also were caught off-guard - most of them unwittingly prescribed medicines that do not work against the bacteria.
"It is time for physicians to realize just how prevalent this is," said Dr. Gregory Moran of Olive View-UCLA Medical Center, who led the study.
Skin infections can be life-threatening if bacteria get into the bloodstream. Drug-resistant strains can also cause a vicious type of pneumonia and even "flesh-eating" wounds.
The Centers for Disease Control and Prevention paid for the study, published in today's New England Journal of Medicine. Several authors have consulted for companies that make antibiotics.
Researchers analyzed all skin infections among adults who went to hospital emergency rooms in 11 U.S. cities in August 2004. Of the 422 cases, 249, or 59 percent, were caused by methicillin-resistant Staphylococcus aureus, or MRSA. Such bacteria are impervious to the penicillin family of drugs long used for treatment.
The proportion of infections caused by MRSA ranged from 15 percent to as high as 74 percent in some hospitals.
The good news: MRSA infections contracted outside a hospital are easier to treat. The study found several antibiotics work against them, including some sulfa drugs that have been around for decades. A separate study in the journal reports the effectiveness of Cubicin.
However, doctors need to test skin infections to see what germ is causing them, researchers said.
It's easily taken care of. see thread.
[ 27. October 2006, 01:34 PM: Message edited by: brentb ]
Posted by sadie420 (Member # 9294) on :
I think you first have to decide what path you feel most comfortable going down - alternative, allopathic ... both?
If you've just recently been bitten, abx seems to help many. If you have chronic, late stage lyme, I don't think abx is going to do much (personal opinion).
You ask "what works", but that is subjective since we are individuals with different operating systems, philosophies and such. I think it really necessitates you doing some research, visiting other forums, trying things out and thus attempt to clarify what feels right for YOU.
I'm an alternative gal, always have been. I very much like the salt/c protocol as well as Stephen Buhner's core herb protocol and feel that I'm definitely making headway.
Keep asking questions, if you need to, but be open to your own intuitive process as well.
Sadie
Posted by 5dana8 (Member # 7935) on :
Your question what works for me has been : ABX detox Rife Supps(including pro-biotics) some herbs positive attitudes prayer
Posted by run4fun (Member # 10204) on :
WOW...thanks for all the feedback and ideas...Typically I'm an alternative gal myself and have tried all sorts of things that will work for a while and then I feel like I do and feel desperate and go back to the abx as those ultimately are what got me functioning again. I have the chronic stuff and so often feel conflicted and confused as to what to do and what to take or not take when it rears its ugly head again. I would like to know where I can get more info on the salt protocol and any other alternative therapies that really work. The neuro stuff is the real killer for me. Again...I appreciate any and all feedback as I feel really alone with all of this. Christina
Posted by sadie420 (Member # 9294) on :
Hi Christina,
Here are two websites - for the salt/c protocol and Buhner's herb therapy:
quote:Originally posted by run4fun: I would like to know where I can get more info on the salt protocol and any other alternative therapies that really work.
As for me I like the silver protocal with quality whole food supplements and xtra vit C. best of luck
Posted by Cobweb (Member # 10053) on :
Are you Hope4Better's cousin?
Posted by run4fun (Member # 10204) on :
no...why do you ask?
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Cobweb: Are you Hope4Better's cousin?
just wondering
Posted by lymie tony z (Member # 5130) on :
Yeah BrentB...I'M the ignorant one>>>>
And you're the smart one huh??? sticking vitC and salts in your body...silver too...???
Well you'll be easy to pick out of the crowd....you'll have that distinctive nickel colored skin tone!
I'm not ignorant enough to try your advice...
anyone who goes around spouting all these other alternative protocols....besides Dr B's alternative protocol MUST have some steere ulterior motives.
Nuff said.....zman
Posted by brentb (Member # 6899) on :
quote:Originally posted by lymie tony z: I'm not ignorant...
I doubt you are. Pharmablogging shills are all over the place. Posted by lymie tony z (Member # 5130) on :
Hey there humble BOY...
you've accused me of pharmablogging(whatever that may be...the first time I heard about it was from you)...
being ignorant....
and debased and exposed....
If by posting here that DrB's protocol or ILADS is the way to go for lyme disease then yes...guilty as charged.
People....serious,frightened,desperate people come here every day to find out "what works"...
If they have to filter thru all the non-sense themselves they get discouraged and even more desperate.
I just try to limit their frustration and give them the TRUTH as I and THOUSANDS of DrB's patients can attest.
Folks like you come on here with all the weird junk and give creadance to the IDSA,scifimed,CDC,and the Steerites calling we at lymenet "lymenuts"...
But that's OK....I'm glad to do it!
As I'm sure in the twisted minds and hearts of the trolls and such around here...it gives their puny lives some sort of "purpose" black as it may be.
TATA.....zman Posted by brentb (Member # 6899) on :
quote:Originally posted by lymie tony z: Hey there humble BOY...
Why so nasty? Oh I know...I've proven that you are either mentally challenged OR a pharmablogger. The difference between you and me is I have no problem with abx with alternatives. You have a unreasonable and irrational fear of any type of "alternatives".
I state simply that abx ALONE are a hit or miss and nasty coinfection like MRSA and VRE can pop up and cause even more problems.
It's not complicated. Yes we have a pandemic of borrelia...we also have a epidemic of mutated bacteria due to abx use such as MRSA.
If we give the abx to the masses MRSA and other nasties will cause very serious harm to not only us but all other living beings. It's a problem with cattle and horses from what I hear. Imagine a world being attacked by a flesh eating bacteria and resistant to everything. We are not far off.
The government will NOT allow abx use for the masses on a bacteria which is probably totally resistant anyhow. Why else all the BS propaganda spouted by Steere, Wormser, Shapiro, et all.
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