posted
I am so confused on which way to turn! I try to do research on everything but the more I research, the more confused I get....
Abx, bionic880, Gerson diet, Burrascano, PE1, ??? I just dont know what to do. We have have family of 5 who all have it and I just want to make the right decision..
I am so very confused right now. Any help is great!!
Posts: 137 | From Illinois | Registered: Jan 2010
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posted
Read what you can, then go by your instincts. There's not one universal answer for everyone, unfortunately, otherwise it would be easy to treat.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Most people start with antibiotics like the Burrascano protocol (kills as many germs as possible, gives body needed supplements, strengthens the immune system with the exercise requirement, diet requirement eliminates many symptoms also). That gets a large percentage (many more than half) of folks well.
For those who do not get well that way, then it is time to try other methods.
Hopefully you and your family will do well on antibiotics and that will be the end of it for all of you.
Your reaction to antibiotic therapy can give you clues to what you need to try next, if meds fail.
I wish you the best. Usually, it is not that hard.
Posts: 9931 | From Maryland | Registered: Dec 2007
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TF
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posted
I and a number of my friends were cured by going to doctors who followed the Burrascano protocol.
Posts: 9931 | From Maryland | Registered: Dec 2007
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-------------------- Posts: 215 | From California | Registered: Sep 2011
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nonna05
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posted
TF Is it gone completely????????? Ok my body barely has energy to get to other room and back... On days when I force it, like doc appts, I pay for it.
Yet , there are times I lay here and at least my head thinks action.... This has gotten worse recently.
Sixgoofykids says the Dr.B plan,. But exercise is important....So if usually not to hard ...how to get to the action point or whatever you call it?//
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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Brussels
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posted
Dr. K says today that abx won't cure lyme disease anymore. He is also an ILADS doctor!! It USED to be a wonder treatment, he said, when lyme was not as virulent as today. Today, it is not the solution anymore.
ABX won't strenghten your immune system. It will weaken your immune system as it kills both friendly and unfriendly bacteria. It will disrupt your gut and the immune system of a person is about 70-80 % in the area of the gut!
Having said that, I think we ALL tried abx once, at least, for lyme disease. All of us!
If you never try, you will NEVER know. In my case, it made me sure it was NOT the way to go, nor for me, nor for my daughter, and I will NEVER take the abx route again, unless I find NO other treatment.
And this goes for ANY infectious disease I get, not only for lyme. ABx for me is just short term, to be counted in days, not even weeks. But that is how I became because of own experience! Without experience, how can you know?!!
Again, some people are lucky to get lyme under control even with 2, 3 weeks of doxy. I see them around me. It usually though happens to people with the EM rash here in Switzerland.
People of all ages, from young to old, take the 2,3 weeks of abx and they get rid of the EM rash, and the disease does NOT develop. For years. I swear these people exist!!!
I know even a boy who got EM rash in winter, so he had the so called 'chronic lyme' right?, but his rash got away with 2 weeks abx and he never develop any symptoms.
It happened at least 4 years ago, if not more. He's still symptomless!!! He still gets bitten by ticks every year, quite many times and is still fine.
But, if they start to take abx for months without much progress, they will become like most of us here.
But whatever treatment you choose, I think, you will improve. Many or most of us improve, you just have to read this board for years to see. A few don't, though, but most improve.
Not to remission, but most get better and they get back to their lives, with or without continuous treatment. You just can't stop treating and trying!
Posts: 6199 | From Brussels | Registered: Oct 2007
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quote:Originally posted by nonna05: Sixgoofykids says the Dr.B plan,. But exercise is important....So if usually not to hard ...how to get to the action point or whatever you call it?//
I started on the Dr. B plan, I finished with the Bionic 880. I fall into the category TF is talking about who didn't get fully well on abx. I got to a certain point and fluctuated up and down, never getting beyond that point, so I tried something different.
I do not think I would be well today without exercise. Without exercise I do not even know that I would be staying in remission. I think it's THAT important. You don't have to become a gym rat, but you do need a good, full body workout three times per week. I choose pilates. It's full body, includes stretching, and is moderate weight training.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Rivendell
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Member # 19922
posted
willow,
It is very confusing, I know.
Some people do very well just taking long-term Doxycycline. It is a very slow process with Doxy, maybe two or three years before the improvement is significant, but they eventually get to 80% to 90% of where they were before getting sick. And they just stay on the Doxy.
Some examples of this are Phyllis Mervine of the California Lyme Disease Association. The husband of Pamela Weintraub, who wrote the book "Cure Unknown" (an excellent resource), also stays on the Doxy treatment according to her book and does quite well - working fulltime.
Pamela followed pretty much Dr. B's protocal for about four years and found that when on antiobitics she did well, but when off she got sick again. According to her book, Dr. B suggested that she go off the antibiotics until she hit bottom, then take the antibiotic until she got well, then go off again. He told her to repeat this three times. That is how he said he got well. She tried it and it worked for her, as well. But first she had been treated for years for the co-infections and the Lyme before doing this. (I guess each time she hit bottom, more of the Lyme came out of hiding, and then when she would restart the antibiotic more Lyme would be killed until it was finally gone.)
The exercise part takes time and should not be attempted aggressivly until you are doing better. I have post-exertional malaise, and right now yoga about two or three times a week (very gentle) is about my limit. You do no more than your body can handle and increase intensity very very slowly if you are exercise intolerant. Let your symptoms guide you.
Others use herbs combined with antibiotics or alone. Some use other things.
It is just trial and error. Just start with something and see what happens.
If you see a LLMD, try to see someone who also uses alternative treatments, that way you will have more options.
Best wishes.
Posts: 1358 | From Midwest | Registered: Apr 2009
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quote:Originally posted by Kramberry: Antibiotic should kill the bacteria but still many people are so sick.
Antibiotics do kill some of the bacteria. They also drive somemof the bacteria into cyst form where they can hide out until you stop the antibiotics, at which time they emerge again. This is why its so hard to treat with antibiotics.
Posts: 707 | From Colorado | Registered: Jul 2010
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I have no symptoms at all. None. I have been symptom free for over 6 1/2 years now. I have had steroid injections since completing my treatment, and I have suffered terrible stress, still the lyme and cos did not come back.
I have the exact same life I had before lyme disease.
I don't do anything to prevent relapse. Nothing at all. However, I do not smoke and I rarely drink alcohol. That is my normal lifestyle.
I used oral antibiotics only. I took flagyl to kill the lyme in the cyst form, so that is how I got rid of lyme--2 antibiotics at once. That is necessary. Read it in Burrascano.
I also had babs and bart.
I had these diseases at least 10 years before I finally was diagnosed. I suffered a lot in that time.
No more! That's why I believe in the Burrascano protocol. It worked for me and my friends.
But, it is a 4-pronged approach:
antibiotics supplements diet exercise (weight lifting 1 hour every other day) to boost the immune system
If you leave out the exercise, you will relapse when you stop treatment. You have GOT to restore your immune system, and the specific exercise Burrascano recommends will do it (calesthenics, weightlifting etc. It CANNOT be aerobic exercise such as walking).
Posts: 9931 | From Maryland | Registered: Dec 2007
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quote:Originally posted by TF: If you leave out the exercise, you will relapse when you stop treatment. You have GOT to restore your immune system, and the specific exercise Burrascano recommends will do it (calesthenics, weightlifting etc. It CANNOT be aerobic exercise such as walking).
Well stated.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Tracy9
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posted
My 22 year old son was completely cured (remission, if you will, it's been over a year) with antibiotics alone.
No supplements, no diet, no alternative treatments. I would have had I been able to get him to comply. I occassionally got him to choke down a vitamin or a milk thistle.
He was extremely ill, congential and chronic, missed 2 years of school, bedridden, profound fatigue, Lyme, Bart, Babs, horrible SPECT scan, you name it.
A year and a half of abx, including 5 months of Rocephin, and he is 100% fine and just finished Basic Training.
Everyone is different. He was in really bad shape and could not even go to school. Now he is in better physical shape than most people, and in the Army. He never did ANYTHING but antibiotics.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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TF
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Member # 14183
posted
Yes, today at the ILADS conference, Dr. J. (world famous lyme pediatrician) told how he is getting children well with antibiotics.
This includes those born with tick-borne illnesses and severely, severely ill.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
It is different for everyone depending on the severity and entrenchment and #'s of infections and our own unique health status ... I think ABX are necessary to get rid of the initial load of bacteria ( if symptoms are bad ) that would otherwise so overwhelm a depleted body , along with immune system support and organ support , lots of probiotics to offset the ABX damage and lots of rest and exercise when one is able ... dr. B suggests every other day ... when the bulk of the infection is dealt with then it may be possible to treat naturally and bring the body back into harmony by balancing all the organs with herbals and supplements...if a relapse happens then you know you need more ABX... the cyst forms are coming out of hiding and need addressing ?! This makes sense to me and if the only way to kill them is when they come out of hiding then this start and stopping of ABX makes sense to me... the adrenals and the digestive system ( among many things ) take a beating ... they need to be supported along the way ... when one is well enough and has a functioning gut, then dealing with mold , candida , heavy metals , parasites etc would seem to be the next step... I know many here say you can't beat the lyme until you address the mold issues etc... but if you cannot handle a detox and you only get sicker this cannot be helpful ... you must be in good enough shape to handle the detox... this is only what I think from my own experience ...I may be wrong ... but it's where I am at now ...I will eat my words very graciously if I must @ a later date ... fine if you can handle ABX and heavy metal detoxing and mold treatment etc all at once ... I have not been capable of that though ... who has been diagnosed with lyme & co. and NOT treated it but instead treated mold and heavy metals etc first ?! I think we learn that we must address these issues eventually , but when the body is ready to ... PS ... Tracy I am so happy your son is doing so well ... I hope he continues to enjoy good health ... PPS... it also makes sense that the bacteria is becoming immune to the ABX ... and so this treatment may lose it's effectiveness over time depending on the bacteria and its mutating capabilities and in some cases has already lost its effectiveness ... but one doesn't know until one tries it...I am primarily for natural treatments whenever possible but this lyme & co seemed stronger than anything I could throw @ it naturally ... ABX have their place ... maybe not for everyone ... but after trying a lot of other alternatives I haven't found anything that works as well @ the killing ...
-------------------- "Gratitude is not only the greatest of virtues , but the parent of all others "....Cicero Posts: 254 | From new jersey | Registered: Jul 2009
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penguingirl
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posted
Everybody is different so no one treatment will work for everyone.
Also trying to stay positive and distract yourself with whatever you can do to not let you be down all day. There will be tough moments of course but anything even a minute just to laugh about something can do a body good.
-------------------- Posts: 1204 | From USA | Registered: Oct 2010
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posted
Maybe the strains are different For all of us thats why its hard to erradicate with certain meds that work only on specific strain you got thats why other recover.
-------------------- Posts: 215 | From California | Registered: Sep 2011
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posted
Oooooops... sorry Lymetoo ... I forgot this time ...usually I do !
-------------------- "Gratitude is not only the greatest of virtues , but the parent of all others "....Cicero Posts: 254 | From new jersey | Registered: Jul 2009
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posted
I don't think Ilads doctors prescribe strictly antibiotics anymore because the relapse rate is so high.
My husband had Lyme with no coinfections and got well using just antibiotics,. No supplements, herbs etc...He was supposed to take herbs for maintenance but never did.
A close friend of mine got better using only Cowden herbs but also had Lyme with no coinfections.
I get to around 90% on antibiotics with some 100% days (Abx are definitely my friend unfortunately!) and after transitioning to herbs I usually backslide after several months. Very frustrating. I have coinfections, viruses, etc... I seem to have gotten rid of Babesia which I am thrilled about.
It really is different for everyone and coinfections make a big difference as well as genetics. Some people are genetically more prone to producing biofilms, others have a weaker immune system due to genetics.
Find a good LLMD and good luck!
-------------------- unsure445 Posts: 824 | From northeast | Registered: Jun 2008
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posted
I will add that Byron White herbs have peeled away many lyme and coinfection layers for me since starting them.
You don't realize how many layers there were until you feel a lot better.
Definitely worth looking into for you and your family. Take care!
-------------------- unsure445 Posts: 824 | From northeast | Registered: Jun 2008
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scorpiogirl
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Member # 31907
posted
18 months of Abx (oral, Bicillin injections and IV) did NOT help me. But I don't think I'm the majority though. I have the defected genes where I cannot detox. So I am going to try Dr. K's protocol next and hope for the best.
-------------------- Posts: 1391 | From Lyme Land | Registered: May 2011
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posted
Kram,.. Neither do I? I'm still lost with how to treat this and still not 100% what is best for me. My gut keeps screaming to me.. No long term abx.. It will only make me weaker. I wish this was not so complicated!!
Posts: 267 | From South | Registered: Oct 2011
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RZR
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posted
TF....Do you still exercise with weightlifting after all these years?
What supplements did you take during treatment?
-------------------- Tick bite May 2009 Diagnosed June 2009 Posts: 2329 | From SouthEast | Registered: Jun 2009
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RZR
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posted
Up
-------------------- Tick bite May 2009 Diagnosed June 2009 Posts: 2329 | From SouthEast | Registered: Jun 2009
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posted
RZR, if you're not getting an answer from a specific poster, sometimes it's best to PM them. She might not come to the board every day, or might miss the thread. I'm just speaking from my experience .... I don't see every post directed to me.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Brussels
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posted
Alice, dr. K's main focus is on detox. In a very wide sense. He uses killers of all sorts but mostly thinks that detoxing will give you back your health long term.
Just think about one thing: many people get bitten, several times, and many don't fall sick, never fall sick. I see these people in my neighborhood.
I got one bite and fell totally sick. So did my daughter. We got well after months of treatments, until next bite. Then again sick and so on. Or just relapsed without a new bite.
My neighbors of all ages get as much bitten as us and so far, none fell sick.
There must be something that makes them different to me and my daughter. That 'something' is what dr. K tries to find out and treat.
Heavy metals is one of these items. Mold another. Vaccination damage another (many people in my neighborhood are not vaccinated).
Few have amalgams in their mouth (I had MANY, so I probably passed the problem to my daughter as I breast fed her).
If the 5,000 year old ice man mummy had already Borrelia burdgodorferi in his body, well, it is not a new infection. There must be a reason why so many are getting so ill today with a bacteria that is known to infect humans for at least 5,000 years!
Posts: 6199 | From Brussels | Registered: Oct 2007
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