like many of you i made the decision i needed the abx to tx lyme...i needed to get my kids thru college
i needed to stay independent so i don't ruin their lives
well...i'm wondering how many of you have begun to have trouble with regular-normal bacteria infections not responding to regular dose abx like they are supposed to
i'm realizing that over the last 14 months i have had infects-eye, ear, throat, lungs...that don't respond to the 1st abx they give me
primary seems confused and trys another and another---sometimes an antifungal before i get better
weeks-months to get over what used to take 10 days tops
anyone else dealing with this
neddless to say it is sobering
i don't regret the abx i took...but wonder if this is the beginning of the end
i joke i'm old (59) but i'd really like to play awhile longer...at my own speed
Posted by seekhelp (Member # 15067) on :
I am very concerned about this too. Scary. The IDSA ain't all stupid.
Posted by adamm (Member # 11910) on :
Yep, definitely scary. Many don't have any other options, though.
Posted by TerryK (Member # 8552) on :
Good topic. I'm concerned about this too. It is a serious concern. The alternative of not treating lyme is not an option either though.
If you don't get better until an anti-fungal is added then it sounds like the problem was fungal rather than bacterial which is why abx wasn't working. Have you considered that you may have some underlying fungal infection from taking abx?
Fungus can be very difficult to get rid of and can hang around for a long time, infecting the ear, throat and lungs. I'd look into that further.
Back to the abx resistant strains. Hospitals are full of abx resistant strains of bacteria. Good idea to stay away from hospitals if at all possible for that reason alone. Of course, I think we all want to stay away from hospitals anyway.
I did read that green tea can help some abx work better for MRSA. There are some other things that supposedly help abx work better. I think I'd better start keeping notes on those. LOL
Seems like a good idea to add herbs in when you have an infection that is not responding to abx. Of course I mean an herb that is known to work on whatever infection you have. I think herbs are less likely to cause bacteria to become resistant but I don't know that for sure. I doubt there have been many studies on it.
Terry
Posted by sutherngrl (Member # 16270) on :
Okay, well the other alternative is just to stay very ill with LD and possibly die from it.
I don't think it is our fault that bacteria doesn't respond to antibiotics anymore. Years ago if you went to the doctor, no matter what was wrong with you, they gave you antibioitics.
The bacteria started changing back then to survive the antibiotics. Maybe just maybe that is why we are having so much trouble getting rid of LD now.
It's not your own body that is causing the problems, it's the changing bacteria that get into our bodies causing the problems.
Science needs to keep up and they are not. They need to get interested in coming up with antibiotics that will work on new emerging bacteria.
It's not just us, the lymies. I am hearing more and more people complaining about not being able to get over things that they use to get over quickly. This has nothing to do with us taking so many antibiotics. Bacteria are ever changing creatures.
Posted by micul (Member # 6314) on :
I don't believe that it is a matter of too many abx, but rather the manner in which they are used.
Here are some of the reasons that this happens IMO;
Monotherapies. Using a single drug at a time to fight bacteria that already have developed some kind of resistance to a wide variety of abx.
Too little abx. It just boggles my mind to see some of the rediculous protocols that are used. For instance; 1 tab of Malarone for Babesia while taking a single drug for Bart or Lyme. And then loading up on vitamins and minerals (mag esp) that breed biofilms and make super pathogens out of ordinary bacteria.
Under using probiotics, and /or Using probiotics that are dead
Stopping abx too soon because they feel ok, and/or because they don't want to be on abx anymore. This practice leaves quite a lot of bacteria/protozoa/Bb that have become even more resistant to abx, and then pass on this resistance. The list could continue.....
Posted by sutherngrl (Member # 16270) on :
I took 1 tab of Malarone for 2 months for my Babesia and it worked. I made huge improvement during that time.
Posted by lpkayak (Member # 5230) on :
yes---good topic and i hope it stays that way.
i have always been an abx first person to tx lyme because in my many years at this i have seen what happens when that isn't done...those folks may not be here to talk about it
but-i always use a lot of herbs and supps and less abx when i can
i know a few who have gotten over the hump w/o abx cuz of allergy...but they really had to change their lifestyle drastically---and be very strict about diet, exercise and complicated herb-supp protocols.
the trouble is i have seen many more get so bad they can't come back when they finally decide to tx
so... i do think it is impt for us to start to talk about this
lymestop i hope we can stay in touch-have our own mini support with others dealing with this
terry: thanks. i am aware of the fungal thing...it is just so hard to get the meds from regular docs and it really p----- me off cuz the research show like 90% or more sinus infects are fungal.
i agree about staying away form hosp and nursing homes are a problem too. and sadly i have just realized i need to limit time with friends and family who work with the elderly---i ave a close person i know dealing with multiple infects right now-she's under a lot of stress...i love her...but i'm afraid to go visit
yes-i'ver heard of the green tea?MRSA thing---thats really neat huh?
also c-diff is gettin to be a big problem so i think we need to be real careful about probiotics and esp sbc
suthgirl and micul:
this is the biggest thing i think. we need our abx to function-raise our kids...stay alinve until there is a cure.
our abx are nothing compared what is put in our food supply-theres other issues too...i can't think of them right now
and yes micul...all of your points i agree with...all a piece of the puzzle.
lets keep this going. i need the support and we can all learn from each other.
now-for the record---i took my high dose abx in 98-2000.. i am just having problems now...after starting tx at lower doses a year ago.
Posted by METALLlC BLUE (Member # 6628) on :
The antibiotics we take is less than 30-20% of the antibiotics given around the world thru animal care, farming, crops, as well as preventative treatments. People and animals are literally being given antibiotics "before" being sick, and yet Lyme patients are given what?
We're the least of the problem, and to be honest, the IDSA shouldn't even be pointing this out when they permit people with countless well known diseases that they gladly treat with multiple antibiotics or antivirals, ranging from Herpes, HIV, through Tuberculosis, Leprosy, Acne, chronic obstructive pulmonary disease and onward.
The reason we -- Lyme patients -- get sick is because our immune systems are compromised, often from multiple infections, it's not just a matter of antibiotic resistance. Immuno-compromised individuals are prone to constant chronic infection, but that's why the antibiotics are used, to kill the underlying infection that is causing the compromised immunity, in order to restore function. It's also important to recognize that an antibiotic "naturally" doesn't necessarily kill all bacteria. Bacteria by nature are sensitive to different antibiotics and that's why different antibiotics are given for different infections. So when a Lyme patient is on say Tetracycline but get's sick with say Tuberculosis too, -- this is a far fetched example -- you don't say "Oh well, look here, we've created resistance by overuse of Tetracycline and now this poor Lyme Disease patient has Tuberculosis and we can't stop it with Tetracycline." The infection was never sensitive to the drug.
The arguments put forth by the IDSA in respect to Lyme Disease and antibiotic resistant strains are impotent and a justification to support their position while ignoring a substantial aspect of the argument I've put forth.
Posted by lymeloco (Member # 7192) on :
The military in Afghanistan have to take Doxycyline so they won't get malaria. That's a lot of antibiotcs.
Kind of makes you wonder about the suicide rate and if some have lyme and don't know it. Not a doctor, just a thought.
I have seen it happen with my own family who have not been on long term antibiotics also having to switch to a different one.
I'm talking children too. Maybe the bacteria is changing and becoming more virulent.
Is there ANY proof that long term antibiotics has severley harmed or killed someone? Other than i.v. infections, which you can get being hospitalized.
How come everyone around me has been sick and yet I haven't caught anything from them?
Whoa, I better shut my mouth! Posted by glm1111 (Member # 16556) on :
I know this isn't a popular subject here, but the salt/c protocol has saved my life and I am almost symptom free. Salt is a natural broad spectrum bacteriocide.
Sea Salt, not table salt. It works on a deep cellular level, similar to when you soak an infected finger in a glass of salt water and it pulls the infection out.
If you are salt sensitive or have a pre-existing condition like diabetes than it's not for you. A lot of people are in fact salt deficient and dehyrated.
Don't negate this protocol so quickly since we don't have that many weapons. Antibiotics have saved my life in the past in an emergency, but staying on them for a long time can really break down your immune system ie yeast etc.
I took antibiotics for 4 yrs including 6 mos of IV rocephin and I couldn't get on top of these infections. I had excellent LLMDs as well.
If antibiotics work for you than great. I am not anti anything as a protocol as long as it gets rid of these infections.
I think PARASITES and WORMS are a MAJOR problem with Lyme and I think maybe long term antiparasitics might make more sense.
Posted by lpkayak (Member # 5230) on :
MB-thank you. thats the kind of stuff i have read but can't remember
i didn't know doxy got malaria---not babs tho, i guess
i really hopw we can keep this thread focussed on the supposed "overuse" of abx
a friend told me abx are now in many public water supplies
Posted by seekhelp (Member # 15067) on :
They are in the water supply if they live near a LLMD's office. lol.
Posted by lpkayak (Member # 5230) on :
but-lymestop-for me-if i didn't take them i would be in bed or a nursing home or dead-my kids would not have gotten early tx and gone on to college and become independent ppl.
my daughter is actually working with artemisisin as a malarial cure...she's a chemist working on her doctorate...who knows-maybe it will help with babs
i would not have had the last 25 yrs to help others and kayak and garden and be at the beach and raise those kids right.
for me abx were worth any problems i have now. i did the most important thing i was put on this earth to do...and without abx i would not have been able to.
there is really positive research re tx on the horizon...we just have to hold on a little longer
Posted by lpkayak (Member # 5230) on :
hey-this is almost a chat!
Posted by whome (Member # 18979) on :
MUCINEX keeps your mucus flowing and keeps you from getting secondary infections. You might try it next time you have a cold to keep it from progressing.
Posted by lpkayak (Member # 5230) on :
i take mucinex and sudafed pretty regularly-and you're right-it does prevent infections---or used to---and still does for my kids
Posted by btmb03 (Member # 18394) on :
I wonder how many people on this board have tried guaifenesin (the active ingredient in Mucinex and a protocol touted by Dr. St. Amand for fibro).
I don't mean the high doses the protocol recommends but little by little..kinda to help synergesticlly - it is a very intriguing concept though....
Posted by TerryK (Member # 8552) on :
btm - I've been on guai since 2-2000. I've posted here before about it.
I think it is helpful for detox purposes. I did have some improvement but I continued to decline overall due to all the untreated infections.
I'm not really on the protocol properly now because I'm blocking due to some herbs I've been taking. I seem to still need it so I stay on it.
Terry
Posted by btmb03 (Member # 18394) on :
Lymestop, Terry, interesting. I really would like to try small doses, I don't know of any LLMD's who really "OK" it as a detoxing agent but from what little I've read and heard about it can be very helpful...*and* the side effects seem relatively minimal, usually herxing-like stuff.
Terry I will look up some of your old posts, thx.
Posted by map1131 (Member # 2022) on :
lpk, oh yeah. Three yrs of every combo of abx did my body in. That's why if I need to go there after being abx free for over 5 yrs, I have to go with a monster like levaquin.
Levaquin is big $$$$. I will only do 30 days at a time. The last time seems to have stirred up something else to worry about.
I do better sticking with my rife machine.
Pam
Posted by btmb03 (Member # 18394) on :
map, I am curious as to what levaquin "stirred up" since I did have some good results with fluorquinilones (sp?) but only took them short-term.
Posted by lpkayak (Member # 5230) on :
i have found that guai helps me-just makes me feel better
i did read the book but sort of discounted it cuz i have just thought fibro was undx lyme
i ended up with copd from moldy school building i was forced to work in--relied on guai and sudafed-they can make insomnia worse and blood pressure go up...but mostly they just make me feel better
never took high doses---but did tae higher dose than otc
at one point my primary thought i was "drug seeking" when i wanted prescription guai to prevent bronchitis...she knew about the book and thought it was awful ppl would follow the protocol
but shes a duck
Posted by lpkayak (Member # 5230) on :
is rifampin the same type drug as levaquin?
my llmd chose rifampin for me to target bart---i was glad because i already am disabled from ortho stuff and was nervous about lev
so map-you are saing because you took abx in the beginning-now , yrs later regular abx don't work---you need the newer stronger abx? like vanco?
i'm not that clear about tpes of abx
i know i am allergic to sulfas
zith doesn't seem to work for easy stuff anymore
cipro and vanco seem to help me sometimes
Posted by lymednva (Member # 9098) on :
I had the opposite problem. Years before my dx I had six week sinus infections, regularly. Almost every infection required more than one course of abx,and usually not the basics.
Nurse practitioner knew to go straight to the big guns. Duck didn't. Fired that practice.
Posted by btmb03 (Member # 18394) on :
You don't need a prescription for guai, St. Amand's book has several sources (legal of course) so I might give it a try...
Posted by randibear (Member # 11290) on :
ever since i started having antibotics, my intestines have rebelled -- c. difficile, colitis, you name it.
there has got to be a better way...
Posted by TerryK (Member # 8552) on :
btm - I don't want to divert the post but just want to say that taking guai via the St. Amand protocol is fairly complex. You can't just take any dose. You need to get to a "cycling" dose. The cycling dose will cause symptoms, often significant.
St. Amand does not believe it "detoxifies" anything. That theory comes from other doctors I've talked to and read information from. One lyme doctor thinks it helps ATP that is blocked.
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The IDSA ain't all stupid.
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