"Even though there are guidelines out, I just don't see enough people reporting success, not that there arn't any, as I have seen a few report success with antibiotics, but more that arn't getting well compared with those that are."
Is this the general consensus? Are antibiotics ineffective and are we using them because we hope they will help but aren't sure?
I'm confused. How can so many LLDs claim success with antibiotics if they generally don't work well.
Please, those who've been around the Lyme block tell us less experienced ones. Are we all just wasting our time. I hope not.
Posts: 199 | From utah | Registered: Jan 2009
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lymeparfait
Unregistered
posted
Antibiotics seem to work very well if lyme is quickly diagnosed and treated. AFter that...antibiotics will not cure you of lyme. Antibiotics move it, or store it.
Chronic lyme, or undiagnosed lyme with later complications, has different success rates with antibiotics. All depending on the individual. Some claim remission, and some claim better symptoms, but no remission, and some are downright sicker with antibiotics due to allergic reactions or increased toxic load!
Seems that many chronic cases do well initially to work on co-infections. I got rid of my Ehrlichiosis and my daughter got rid of her rocky mt. spotted fever with antibiotics...but it did not work for our lyme. My LLMD wanted me to go on IV antibiotics for neuro lyme...but I already felt toxic, and needed an antibiotic break. While on break, I tried alternative remedies, and immediately started to clear my neuro symptoms!
although antibiotics did help us with aliviating symptoms some flu like symptoms in the beginning. It seems to put the lyme into hiding for most, so that those with sever symptoms can get a better lifestyle back, while still always treating the lyme with the antibiotics. Some feel they cannot live well without the antibioitcs because they were much worse before starting them. But there are always consequences of being on antibiotics for the long term, and that can be just as bad as the lyme for many!
We have found that getting off antibiotics after 1 1/2 years of treating co infections, and then doing the natural protocols, have been the best for us. I have learned over time to trust my instincts and my body signals, of when enough is enough.
I have learned here on lymenet about natural protocols, and it has taken me a year so far of questions and research, then trial and error to say that now I believe that the natural protocol is the best thing for my body.
I have many detox problems, some genetic, some acquired with the pathogens and environmental toxins, and some specifically from taking the antibiotics!
Overall, some need to start with what they know. And that means trusting LLMD's. Start with a protocol tht makes sense, and trust the wisdom of someone who hs experience with treating others with your symptoms, and with success.
As many progress, they realize that no LLMD has the exact answer and we need to become our own advocate and LLMD and direct those as to what we feel is workinig. There is no cookie cutter approach, and each need to learn to "tweek" their own protocols if you want success.
I highly recommend you be open to alternative treatments, but you will need to find a good ND in your area to help you if you are a novice.
Natural is the healthiest approach. Antibiotics will releave some symptoms, but leave you with more unknowns in the long run. In the short run, it is ok to begin there if necessary, but always have a plan, when you will get off, and when you will detox. The more you are on the ABX, the longer it will take to get rid of it's residue!
posted
How do you know if you were successfully treated.
There is no test to tell you that your better.
You can only go by how you feel.
Some feel better on antibiotic some do Rife, some do herbals, some do salt/c
In any of those groups its seem there are some cured/remission and somenot
I think honestly the best you can hope for with the current testing and treatment is temporary remissions.
Look at the support cancer, diabetes, MD and aid research gets and they are barey curing anyone. How can you expect to get better from a disease that the half the medical community doesn't believe in.
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adamm
Unregistered
posted
They seem as effective as any pretty much any other treatment, from what I've read. I believe that there is a cure, BTW, and that it's already been developed. It logically follows from the fact that Bb is a bio-weapon (see lyme-rage.info).
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
It takes a variety of approaches to get this illness under control but IMO ABX is the strongest and most effective way to bring it under control.
It is a very complex illness and we don't have all the answers yet about how to cure it but there certainly have been success stories. ABX will be very effective in reducing the spirochetal load and keeping the illness from progressing and doing serious irreversible damage to your body.
If you allowed the illness to progress without ABX you would could end up crippled, brain damaged or have any number of things happen.
But, there are so many other factors involved. What co-infections you have, viruses, and other pathogens that continue to be discovered. What strains of the bacteria you have. Some are more resistant than others and present different symptoms. Your own health, genetics and how your immune system handles things.
Also ineffective testing makes it difficult to know what pathogens a patient really has, at times.
Alternative modalities, IMO, also play a big role. I have always combined both. It's my opinion that no one will get well from ABX and anti malarial s alone, unless it is a case caught very, very early.
This illness wrecks havoc on every system in the body. You must address all of the issues that integrative doctors do. Adrenal function, neuro transmitters, candida, viral therapy, endocrine problems, hormonal imbalances, heavy metal toxicity, hypercoagulation, and removal of mercury amalgams.
Life style changes such as stress avoidance and diet. No junk food, sugar, starchy carbs, making sure the body is detoxing properly, that both phase 1 & 2 of liver detoxification are working properly and taking additional supplementation of vitamins and minerals.
Supplementation must be prescribed under the care of an ND, integrative doctor, someone knowledgeable. They should not be taken ad hock. They work as medicines for the cells.
Proper dosages, when to take them etc. is important and some work synergistically with others, some are lyme specific. Replacing magnesium is crucial for lyme and keeping glutathione levels up, as well.
Drinking plenty of filtered, clean water to help flush out toxins.
Using rife machines, infrared sauna, HBO and other alternative approaches all work.
It's a long and complicated process. There is no easy fix but even if one does not get cured you will see improvement in your functioning.
One must work on the whole body. ABX alone is not a magic fix. The body must be brought back into homeostasis and how one accomplishes that is a long path and different for each individual.
[ 05-08-2009, 11:45 AM: Message edited by: Abxnomore ]
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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lymeparfait
Unregistered
posted
Well all I can say is that most are diagnosed by symptoms, followed by blood tests, and some go further with energetic testing. From those , a protocol is developed.
All three were very positive lyme for me, and now all three are negative lyme for me! I have no lyme symptoms anymore, and negative blood tests and negative energetic testing.
I will believe what I experience. And not two people do experience the same things.
Expect the unexpected and have faith and hope, and see what positive things can happen for you. Follow the path that is opening to you, as that most likely is your unique direction to follow to health.
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
lymeparfait
Well said. I am symptom free, too. I believe ABX gave me the jump start but alternative medicine showed me the way.
All the best to you.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
bwillis-
Have you read the Success Stories thread(s)? It contains many people's accounts of remission from Lyme by taking antibiotics:
All of the folks that are focused on in "Under Our Skin" got better with their LLMD's antibiotic regimens. There are tons of great major News interviews with Mandy, who was visibly very ill, online on youtube and elsewhere. She almost died from Lyme, but she looks great now!
If you need more evidence, please start searching PubMed and Google Scholar for studies on antibiotics and Lyme - there are many positive studies and reports on improvement with antibiotics.
You really can't judge success or failure of a treatment by looking at people that are sitting in the doctor's office with you, in the middle or beginning of their treatment. The people that have gotten better aren't gonna want to hang out in a doctor's office (lymenet) anymore.
posted
I, too, got the critical condition under control with abx. I got off abx, went alternative.
The abx would get me feeling better for sure. However, whenever I stopped them I would crash back to where I was.
I am no longer dealing with Lyme, but am dealing with parasite, babs (a little, no air hunger at all in the past month and I was having it last time I was tested) and some bart. Also, mineral/vitamin imbalances.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
I think that abx generally do work well. Ask most LLMDs and they will probably tell you that better than 90% of patients recover with treatment, and abx is the primary basis of that treatment. That being said, there are probably over 100K infections yearly in the US alone, so even if 1% fail abx treatment, that is a considerable number.
Those patients that do fail to respond to abx treatment are typically more vocal (and rightly so), especially on forums like this one. That does not mean that the posts here are representative of the entire number of infected patients, the most active posters here are a very small slice of the total Lyme patient community. All the information here is invaluable, but the 100s of regular posters are a self-selected sample.
Posts: 263 | From Capital Region, NY, USA | Registered: Jun 2008
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D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
Early treatment responds quite well to antibiotic treatment.
When you have chronic Lyme it is difficult to take antibiotics long enough to completely rid yourself of the disease. They will knock it back quite effectively in many people.
We are sticking with Rife type frequency treatments simply because it allows long term treatment without the negative aspects of most other treatments. I know my wife could not tolerate a long term antibiotic regimine, even if she had that option available to her.
Dan
Posts: 2919 | From Minnesota | Registered: Aug 2006
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quote:Originally posted by tcw: I think that abx generally do work well. Ask most LLMDs and they will probably tell you that better than 90% of patients recover with treatment, and abx is the primary basis of that treatment. That being said, there are probably over 100K infections yearly in the US alone, so even if 1% fail abx treatment, that is a considerable number.
Those patients that do fail to respond to abx treatment are typically more vocal (and rightly so), especially on forums like this one. That does not mean that the posts here are representative of the entire number of infected patients, the most active posters here are a very small slice of the total Lyme patient community. All the information here is invaluable, but the 100s of regular posters are a self-selected sample.
Well said, TCW!
-------------------- Wildlife biologist working in tropics since 1997; tick bites in Nicaragua in March 2007, started getting sick May 2007; diagnosed with Lyme based on serological testing in Jan 2009; treatment starting Feb 2009. Wish me luck! Posts: 116 | From Seattle | Registered: Feb 2009
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posted
I'm seeing a LL ND now, and taking abx and antiviral meds. I'm also working hard to take the right supplements, the ones my ND says I should. I'm sleeping better, still working and eating as good as I can.
I hope that will be the enough over time to get me back to close to normal.
Dr. B's guidelines seem to be at the heart of every good protocol so abx must do something. I can't believe that a disease caused by spirochete bacteria won't respond to anti bacterial treatment but I also hope I can get my body to eventually do the job the abx are doing now to keep the germ load down.
That's my hope. My wife tells me every day," you're gonna get better" so I think faith and attitude have something to do with it too.
Posts: 199 | From utah | Registered: Jan 2009
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
A Naturapath who spoke at our Lyme Support group described fighting TBDs as a war.
In the immune system the B cells are the Army, the T cells the Marines, the Nk (Natural Killer) cells the Special Forces....but in order to win the war one needs the Air Force Bombs.
The bombs are the antibiotics/antimicrobials. They knock the "infection" down so the complementary stuff (to build the body) can do what they're supposed to do.
The NDs I know have used abxs for their own TBDs & have sent patients to LLMDs to work together.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Antibiotics worked for me and all my friends. We went to docs who follow the Burrascano protocol.
I had lyme, babs and bart for over 10 years before I was diagnosed and started treatment.
It has now been 4 years since I finished my lyme treatment and I am still symptom-free, enjoying my life--the same life I had before lyme disease.
Many people come to lymenet at the beginning of their lyme journey, get advice about finding a doc and get some of their questions answered, and then you never hear from them again. They get well and lyme is a thing of their past.
Over the 7 years I have been reading this board, I have noticed that few posters remain longer than 1 year. The names that were posting here last year are mostly gone. And, that's how it should be. They get help in their time of need and they move on with their life.
The people that continue to have problems are the ones that continue to post. They seem to fall into 3 categories:
--can't afford to see a lyme doc so they are self-treating,
--don't believe in taking antibiotics, and
--refuse to leave the doc they are with even though they are not getting better.
Burrascano treated lyme with antibiotics for at least 24 years. He was the go-to guy because he was getting lots of people well. That's how he became the recognized expert on lyme disease.
I'm one of the very few who have hung around this board after getting well. Since the people who are no longer sick don't post, it gives new people a false impression--that very few are cured/get rid of lyme disease.
That is a false impression. Just like tcw said, the posters here are not a representative sample of everyone in the country who has had lyme disease. Rather, they are the people that are still suffering with lyme disease.
Posts: 9931 | From Maryland | Registered: Dec 2007
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i'm still doing antibiotics and have been regularly since 2006.
i hate to think i'll be on them the rest of my life. ugh....
i've had problems with them also -- c. difficile, yeast, stomach pain.
i hate taking them but for me, they are relatively cheap and i can't afford a rife or travel to europe.
i wish there was some other treatment available i could use. i'd really try it, but right now i like my llmd and we're doing ok....
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
I can't help but look at a couple of these post and question if they are IDSA trolls trying to get an anti ABX post for their self interest. Probably not but ya never know.
Posts: 805 | From Utopia | Registered: Feb 2006
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ukcarry
Frequent Contributor (1K+ posts)
Member # 18147
posted
Clearly, abx are not the answer for everyone and it is hard to know how long to give them if they are not helping symptoms.
I have been ill a long time, but was only diagnosed 2 years ago: I took Doxy for 3 months, with symptom intensification, followed Stephen Buhner's herbal protocol + lots of supplements etc for 9 months, then resumed antibiotics with a rotating combination. I have babesia, bartonella and ehrlichia as well as borrelia [and who knows what else!].
Some of my symptoms always come and go, or vary in intensity naturally,so it is hard to gauge improvements, but I can't really say that I have noticed progress. Abx [with herbs,supplements probiotics, detox 'binders' etc] do not [or have not as yet] relieve my symptoms, but I would like to persevere for longer if I can because I have heard of many cases that started to respond only after at least 18 months or 2 years of treatment.
Jarjar, I'm certainly not ANTI antibiotics, and I'm sure that for many people, they represent a cure or the nearest thing we have to a cure.
But others who may still be ill despite antibiotics should be able to say so without being accused of being trolls. Having said that, I agree that the impression here may be a skewed one in the sense that people who get well enough to resume their lives may stop posting.
Posts: 1647 | From UK | Registered: Nov 2008
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
I had undiagnosed lyme and babesia WA-1 for at least two years. I had multiple brain lesions and a very MS-like neuroborreliosis presentation. I treated with antibiotics for around two years - a month of that on IV because insurance wouldn't permit longer. Plus standard mepron/zith/art for babesia.
I've gone from not being able to remember where my house is to working two jobs.
I'm mystified by posts that imply antibiotics don't work.
I would beg to differ.
Posts: 3193 | From Northern California | Registered: Apr 2005
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Thanks for sharing your story!! How encouraging as I have many of the same symptoms you once had. I am just one month into treatment.
Thank you again Posts: 515 | From In His Loving Care | Registered: Apr 2009
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LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
I can't stay on abx long enough for them to help. My body can't handle them anymore. I don't know what to do anymore. I was sick for 15 years before diagnosis. Then have been treating on and off with abx for three years. I'm sicker than ever now. I wish there would be a real cure out there. Not just hit and miss.
posted
Detox enzyme genetics and HLA-DR have a ton to do with this. It's utterly idiotic to make sweeping claims either way. They have a good chance of working for those that can tolerate drugs....but you do risk bacterial resistance and mutation that works on a far shorter timeline than we think (read: mystery bug) Long-term use absolutely do not work for those that cannot and will likely make you sicker.
Posts: 713 | From Los Angeles | Registered: Oct 2007
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posted
i am also absolutely not anti-antibiotic, but after years of successless abx-therapy think this question is worth asking.
in my first years of therapy i made great progress, but since 2006 in cant get rid of the pain again.
of course abx helps some, but obviously doesnt help others. how long should they try the antibiotic way?
Posts: 226 | From earth | Registered: Sep 2007
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I tried for one year with absolutely no improvement.
I just started treatment for autoimmune disorder because after my last visit with my LLMD, we discussed my illness in depth...... LD and or autoimmune issues. We decided it is more likely and autoimmune diorder. I am 5 weeks in to that treatment and I already feel 50% better.
I started with 3 weeks of steroids, and have been on plaquenil for 2 weeks. This is the best I have felt in 3 years.
And I was a textbook example of LD. I believed in that diagnosis so strongly; but now I am beginning to believe that not everything is LD. Of course this is early on in autoimmune treatment, but the improvement thus far is amazing.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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In the beginning of my husband's illness, they diagnosed autoimmune and started him on prednisone. He instantly felt better, got off the couch and went to work. Unfortunately, taking steroids is like making a deal with the devil. You can have instant improvement but will have to pay the price later on with: increased infection risk (in my husband' case, pneumoina three months later), osteoporosis (yep, he got that), cataracts (yes), and more.
Please look at the roadback site www.roadback.org which is the treatment of autoimmune conditions with antibiotics. One year is a very short time to treat this disease. Many people don't start to turn things around until the second year. You will have an uphill battle if you mess up your immune system with steroids.
Posts: 984 | From San Diego | Registered: Nov 2006
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Parisa, my LLMD only put me on steroids for 3 weeks. I am off of them now and just on plaquenil.
He has not ruled out LD as of yet; but if you don't improve on antibiotics and you do improve on autoimmune treatment, well its sort of like the proof is in the pudding.
I know a great deal about LD. I have been researching it forever. You could have never convinced me that I had anything but LD; but now I am started to consider that there are other answers to why some of us don't see improvement with Lyme treatment.
I personally feel that you would see at least "slight" improvement within a year of treating LD. I didn't.
I am going to explore this path with my LLMD, that way if we decide that Lyme is indeed the culprit, I will be in good hands.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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bettyg
Unregistered
posted
willis, interesting discussion among you all here.
abx kicked the spirochetes in me for 20 months; had bad flagyl herx; called llmd office leaving detailed info what happened & asked that llmd call me back.
NO CALL; so emailed him what happened; again; NO EMAIL. so i was forced to go out of state for treatment.
she was into supplements; put me on 22 !! 10 at once and then adding every 3-5 days. BROUGHT ON FATIGUE worse than i'd had prior to going there.
i used up the $ 1,000 of supplements & quit them all.
had complete body lab blood tests found many things, those things i'm working on plus a cpap for my sleep apnea, and 3 meds now for my diabetes 2 which was 7.2 vs. BELOW 7.0 and closer to 6.0 per drs. request.
frankly, i've been BLESSED; except for being so sick when i was 1st dx with MONO/EPSTEIN BARR VIRUS and in bed for 2 weeks, i have NOT BEEN BEDRIDDEN!
i thank god every day for this, and what i'm able to do here volunteering my time to help others and learning daily from each of you here.
i was lymed at age 21; now 60; the person i might have been is long gone; i accept the NEW ME as a valuable person in society and contributing to our lyme activism cause! xox
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I don't doubt you have researched LD extensively. I'm just trying to help prevent the complications of autoimmune treatment and that's why I recommended the roadback site. I have spent three years on that board and have watched the people treated with traditional autoimmune treatments come limping through with all sorts of complications caused by steroids and chemo drugs.
If predisone got rid of symptoms and didn't cause any side effects, I'd be all for it. Unfortunately, I have personally witnessed its true dark side. It took my husband two years to finally get off that horrible drug and he absolutely hated taking it but once your body gets used to it it can be very hard to get off of.
The only good autoimmune treatment is IVIG. If your doctor wants to go the autoimmune route, then see if you can qualify for that. At least that way you will be building up your immune system instead of bringing it down.
Posts: 984 | From San Diego | Registered: Nov 2006
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D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
For an Autoimmune disorder, Low Dose Naltrexone is about the safest and most effective treatments out there.
It also helps with Lyme Disease. You can cover both possibilities with LDN.
Plaquenil may interact with antacids, magnesium trisilicate a few other things.
I am glad this treatment is working for you. Make sure to get a baseline vision test.
Dan
Posts: 2919 | From Minnesota | Registered: Aug 2006
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
I for one am unsure if the ABX are doing something at this point in my treatment.
I don't herx or feel any relief, going on 2 years now.
When I was first diagnosed they did a number and helped with the initial symptoms.
I have been on IV ABX now for a while and feel that it is pushing the Lyme deeper into hiding.
I also think that maybe the toxic overload isn't helping much either.
At this point I don't know what the right thing is to do.
I fear stopping them, but fear the damage it can cause......
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
There are "upsides" AND "downsides" to abx.
They DO alter our immune response and for very complicated reasons, this DOES help. I understand!
BUT
They destroy beneficial bacteria and can cause bacteria to mutate and then we have to come up with a different abx.
The question is, do abx. ALONE CURE lyme?
The answer to that is no.
Just a few years ago, Romanian doctors discovered that abx (likely IV doses) AND restoring Mg levels (again, likely IV doses) CURED lyme in a matter of DAYS.
This is a 2 step approach.
Pick one:
Abx + MgCl
Rife + MgCl
Far infrared + MgCl
The best way is to support our OWN immune defense system which needs help.
It maybe that our own antibodies (if not damaged) can deal not only with Bb's cell walls, but (as they found out with antibodies to anthrax), the antibodies ALSO handled the "toxins" too...to the researcher's amazement.
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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WildCondor
Unregistered
posted
Antibiotics WORK. You need the right doses, the right combinations, and the right length of treatment. if you are undertreated, then they will fail.
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quote:Originally posted by WildCondor: Antibiotics WORK. You need the right doses, the right combinations, and the right length of treatment. if you are undertreated, then they will fail.
This is simply not true for everyone. They work for many, perhaps even most, but not for all.
Posts: 845 | From Eastern USA | Registered: Jul 2006
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quote:Originally posted by jarjar: I can't help but look at a couple of these post and question if they are IDSA trolls trying to get an anti ABX post for their self interest. Probably not but ya never know.
I don't think this is a fair post. Not one person has gotten on this thread and said the IDSA standards are enough.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Marnie,
This Romanian protocol of IV ABX and MgCL you speak of is it being routinely used in Romania or was it a one time trial. Has it been duplicated? How is it you
are so sure it is the answer. Not tying to be cute, just trying to get clarification and why has it been kept such a secret. Any ideas?
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
There are too many variables to state that one things works for everyone. People have Lyme but they also have other factors like co-infections & many other illnesses along with Lyme.
Some of these illnesses may be associated with Lyme & some might be from something different. We also have different genetic profiles.
re:
--
The people that continue to have problems are the ones that continue to post. They seem to fall into 3 categories:
--can't afford to see a lyme doc so they are self-treating,
--don't believe in taking antibiotics, and
--refuse to leave the doc they are with even though they are not getting better.
--
I don't agree with this. There are many people here who have gone to the best doctors for Lyme in the US & elsewhere & are still ill. Many of them have taken the abx & done everything they could to get well. Sometimes the abx just don't work.
Just because something works for "you" does not mean that it will work for everyone. We are individual & have different needs.
Sorry to say but this is a confusing illness. The tests are not accurate enough to see what works or not - so, it's difficult. One drug may work for Lyme but not for the co-infections or herpes or mycoplasmas... Many of us have more than one pathogen infecting us.
It's not "one size fits all" with Lyme. You just have to give things a try & see what works. There's alot of trial & error with this illness.
Everything you do can have it's drawbacks or side effects. Hopefully, we will all find something that will make us well - whether is abx, drugs, supplements, Rife, energy medicine, infrared light, herbs, etc.
There are no rights or wrongs - its all about your choice as an individual. Unfortunately, it can be difficult for some, especially if you've been ill for a long time.
Even some people who treat with abx right after they find a tick don't always get well from abx. It's just tricky...
Good luck to everyone.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
I also disagree with those statements, Sparkle. I check on here every day and I do not fall into any of those categories.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
I don't fall into one of your three categories either. However, I don't believe that ABX alone is the answer except in cases caught and treated ASAP and sometimes even in those cases it becomes problematic.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
There is a very small minority here that self treat. Most do not self treat because they rightly or wrongly feel that someone else is more capable of treating the disease than themselves. Or they simply want the antibiotics which are not readily available without a script.
Or, you have never been diagnosed correctly which means you will not be able to use the services of a physician.
I doubt very much the self treating group has any worse results than any of the rest. Our personal results are as good as you can get without an outright cure. Better than 90% of anyone who has had chronic Lyme, is my rough estimate.
My wife has never had the ability to get antibiotics since there is no diagnosis. If they are unable to diagnose the disease properly, with the tick in hand and all of the standard symptoms, why would we ever trust them to treat the disease?
I have rarely heard anyone state they do not take antibiotics because they "do not believe in them". I do not even know what that means. Treatments are not faith based belief systems. The treatment either works for you or it does not.
So I guess the point of it all is you can improve greatly on antibiotics, but you also can improve greatly without them. Bacteria do not die better one way or another.
Marnie has the most sensible treatment advice I have seen here. Magnesium is a critical element to getting better. How you kill the various bacteria does not matter. What matters is that you do kill them.
At some point, you need the immune system to take over. If that does not happen, you can treat all you want, you will simply not improve. That is true for virtually any disease.
Dan
Posts: 2919 | From Minnesota | Registered: Aug 2006
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
I think the reason a lot of people have trouble getting well is because we are not considering the co-infection of Filarial Worms. I can't believe this is being so ignored.
Burgdorfer found these in the ticks and as an aside found the spirochetes. Antiparasitics along with antibiotics might be much more effective.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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charlie
Frequent Contributor (1K+ posts)
Member # 25
posted
The people that continue to have problems are the ones that continue to post. They seem to fall into 3 categories:
--can't afford to see a lyme doc so they are self-treating,
--don't believe in taking antibiotics, and
--refuse to leave the doc they are with even though they are not getting better. =======================================
....I have actually seen people who are examples of the second line....they won't take abx because of 'beliefs' or because they think abx are 'harmful' and some will have every tooth yanked out of their head rather than take some amoxicillin or doxy...a really archaic approach to aches and pains when they could just take pills rather than self mutilate.
two of us in this household are examples of self treaters...and we're in remission most of the time with an additional blast of abx/anti parasitic a few times a year to keep ahead of the game.
actually I've also gotten a surprising response from using an EMEM machine I was given....back to the drawing boards I guess.
self treating is where it's at IMO...I know how to get abx without a prescription and if you read up on side effects ect you'll do fine...my non professional 2 cents worth.
Charlie
Posts: 2804 | From Texas | Registered: Oct 2000
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
quote:Originally posted by Tincup: Biofilms.
yep and also the longer your infected the longer the abx's.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
bwillis~ Antibiotics would work if a bacterial infection is the problem. Some of us have more than one pathogen causing our problems. You mention being on antivirals and antibiotics. I'm assuming you've been tested for various viruses and bacterial pathogens such as HHV-6, enterovirus, chlamydia pneumonia, lyme, babesia and bartonella. Our best chance of getting well is trying to identify what we are ill with, then treating those pathogens to the best of medical science.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Tincup, plasmin? Is that the "biofilm"?
We know that Bb locks onto our plasminogen (near the middle of this crossed shaped protein) it is in our "basement membranes".
Plasminogen converts to plasmin readily.
Bb looks to be putting on another "cloak" (protein) i.e. plasmin (Salp 15 from the tick's saliva was the first one).
ABXNOMORE...Read my post titled: how did they cure lyme in Romania.
Do the math regarding the % drop in Mg at the outset (when Bb is displacing Mg with Na). Compare the original Mg level to that when it was restored. That is a LOT of difference - percentage wise. Note the time it took to clear the infection. Likely IV doses of abx. and IV doses of Mg were given.
Also, the second Pubmed abstract in the above link points to the absolute need to restore Mg in order for us to deal with Bb's OspB. Our OWN antibodies need sufficient Mg and Ca to be made.
There is a major problem with this pathogen. It is resistant to oxidative stress (free radicals are trying to "oxidize" the cell walls) AND it can rebuild them. Add to this the fact that Bb can go into a cyst form in "hostile" conditions within a very short period of time.
Abx. may help some initially. There are over 50 strains of Bb and about 5 or 6 look to be very dangerous. It maybe that those who recovered fast (via early Doxy) did not have the esp. virulent form.
Of course, steroids are disasterous. Shutting down your own defense system completely is not a good idea IMO.
Taming it down via Humira did not cure my sis either. It helped, but did not cure.
My sis was on nonstop abx. (including IV Rocephin) for 3 years. Mepron with Azith, Doxy, Ceftin, Amox, Tinidazole (more than one round) along with a ton of supplements.
For HER...the above did not halt the joint destruction and other symptoms.
IMO...we need to make use of the chloride channel which Bb triggers when it metabolizes glutamate to GABA. Send in MgCl to displace NaCl.
We DO have many drugs that work to destroy the OTHER pathogens that accompany Bb.
List the pathogens that have "toxins" that cleave MAPKK-1.
I'll start...
Bb, anthrax...
Personally, eliminating lyme disease and ending up with IBS/Crohn's is not something I would like to see happen.
In all fairness, Wildcondor, you did (and continue to do) much more than simply abx. therapy. Most persons cannot AFFORD to do what you have done (HBO treatments, personal trainer, etc.).
IMO, supporting (certainly not shutting down via steroids) our OWN defense system i.e., making our OWN HEALTHY ANTIBIODIES, providing enough "energy" to the infected defense cells (which are making far too little ATP and suffering with "mitochondrial dysfunction)is far better and safer than any man-made drugs.
We need an AFFORDABLE, SAFE and EFFECTIVE treatment for EVERYONE and a treatment plan that DOES NOT LEAD TO OTHER PROBLEMS.
"Multispecies probiotics" (LOTS) are needed if on abx. OR if doing any of the "electromagnetic" therapies...or chemotherapy for cancer. (2009)
PMID: 19423769
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
This has been a great thread...very thoughtful..
Just to chime in with my own experience, I was misdiagnosed for 1 year after my bite and then treated off-and-on with oral abx and IV abx for 4 years....I also did HBOT...treated with antivirals...have treated with abx for all coinfections and have used many supplements... I still suffer from fatigue and a lot of stiff/sore/painful muscles...Yes, the abx helped but I'm still not "recovered" and don't know what else to try....
I think it's so frustrating to not know whether, after years of abx treatment, the continued suffering is from active infection, immune system dysregulation, muscle damage, or nerve damage...
I was at a meeting this past weekend with Pat Smith, the President of ILADS, and she said unfortuantely researchers are still not close to answering that question...
I don't really understand why some recover more than others....I know, for one, I would go anywhere and do/try anything if I could just get rid of this residual fatigue and stiff/sore/pulsating migratory pain....
Posts: 1155 | From Southeast | Registered: Oct 2005
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posted
Its getting to the point that I almost regret asking pointed questions. The posts become a tangled mess of --this works, this doesn't , you're wrong, I'm right.
I've deleted posts because people got so negative using words like "witch hunt" and "idiot".
Some say magnesium, others says worms, still others say babesia or some other co infection, and others say no matter what they do they aren't well.
I just was looking for some hope after reading an experienced poster's reply.
I agree with one thing more than any thing else, Marnie said, "We need an AFFORDABLE, SAFE and EFFECTIVE treatment for EVERYONE and a treatment plan that DOES NOT LEAD TO OTHER PROBLEMS."
There is probably someone who disagrees with that. I'm going to keep taking the abx my LLD prescribed, keep taking my magnesium and probiotics and hope for the best. Some one said abx treatment is not faith based. I think faith has more to do with it than not.
Posts: 199 | From utah | Registered: Jan 2009
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bettyg
Unregistered
posted
willis, that's what i hate most about our lyme/co-infections .... no set rules WILL help this/that situation.
each of is different; what works for one doesn't work for another. so frustrating! hang in there my friend! xox
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gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
bwillis,
On a positive note, I took antibiotics and have recovered into remission. I wasnt diagnosed until 8 months after contracting lyme.
Maybe I am just plain lucky, or had a very uncomplicated case of lyme.
I know I wouldnt have gotten better without antibiotics.
Im also glad to have found a good LLMD who will treat long term.
So yes, there can be a light at the end.
Good luck!
Posts: 1127 | From atlantic city, nj | Registered: May 2008
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
bwillis, that "experienced poster" you speak of has a very definite point of view and that is what came out in what they posted.
So, now you know that lots of us don't agree with that point of view.
I hope that gives you hope!
Posts: 9931 | From Maryland | Registered: Dec 2007
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