posted
I am a new guy here. I have seen a couple LLMD and its believed I have Lyme. I have a protocol to follow comprised of ABX. Mino, Azith, Omnicef, pulsing. I am not a pill taker before all this and hate to take pills, so as of yet I haven't started. Yes I am scared.... My Dr. joked and said I got the wrong disease if I hate to take pills. I just want to be able to compile data and form an opinion. If you would please just post on this if you are 90% or better, complete remission of symptoms or even cured if you are so bold. You may copy and past the questions below with your answers.
1. What avenue you took to reach the 90% point- ABX or Natural 2. What those ABX were or Naturals were 3. How long you were on them and what dosage 4. I have elevated ANA has anyone else had this and it went back to normal after remission. My numbers vary from 1:40 to 1:160 to even normal once over the last 4 years. 5. Every time I work out my CPK levels go high 3 to 6000. They come back down quickly "a few days" with no damage but none the less. Has anyone else experienced this. Numbers only elevated after working out 6. Thyroid has also been elevated but not much at least not enough for meds. Just the thyroid peroxidase around 70. TSH and all other markers normal. Went hyper once but came back to normal in a couple weeks. Anyone else have this and did it go back to normal after therapy or remission.
My story haven't started treating yet: Band 41 IGG reactive when tested 4 years ago std test Igenix BB g/m/a = 80 IGM + 18,23-25, 31, 41 IND, 83-93 IGG + 41 Serum and blood PCR negative Based on symptoms also gallbladder removed, elevated ANA, thyroid issues, skipped beats and palpitations, mild pots vis tilt table, elevated GGT even though I haven't drank in over 4 years. ALT & AST elevate and go back to normal, C4a over 9000 back to normal now, prostate and urinary issues, ocd & anxiety like a mofo, ringing in ears, blurred vision. Every time I work out or do strenuous work elevated CPK 3000 to 6000 I have seen a couple LLMD the last being Dr. J in DC. I have his protocol now.
Posts: 7 | From Florida | Registered: Jul 2017
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I was cured of lyme disease and babesiosis and bartonella over 12 years ago now. I was cured by a doctor who followed the Burrascano protocol.
This protocol is high-dose combinations of antibiotics taken EVERY day, not pulsed.
The Burrascano protocol is the most successful lyme treatment protocol in the world. It is here for you to read and study:
1. antibiotics to kill the germs 2. supplements to replace what the germs have depleted from the body 3. a certain diet to discourage yeast overgrowth 4. a certain type of exercise to restore the compromised immune system to normal
The exercise must be 1 continuous hour of weightlifting every other day--a full body workout each time. Read about it at page 31 and following.
So, I took a few supplements and herbs based on the disease I was treating at the time and the symptoms I was having.
Each person is different in what antibiotics get them to wellness because each patient will have different diseases, allergies and bad reactions to various meds. That's why the meds I took are really no help to you.
For example, zith gave me hives, so my lyme doc had to treat my lyme by working around this allergy. So, he gave me amoxicillin with probinecid and flagyl.
I also couldn't take Biaxin due to extreme side effects.
Same problem when it came to treating my babesiosis. So, the doc could not treat me the traditional way.
If you study Burrascano, you will see that numerous antibiotics can be used to treat lyme. There are many to choose from. The best one is the one that you can take without allergic reaction or terrible side effects. None are "better" than others.
You will also see that you must take at least 2 antibiotics together to treat lyme. That is because lyme can evade any one antibiotic by changing into a form that the antibiotic cannot kill. See "Combination Therapy" page 12.
You will also see that you must treat every single coinfection that the patient has or the person will not get well.
Besides that, you have to determine if the patient has other problems like thyroid deficiencies, trouble detoxifying, adrenal fatigue, mycoplasma infection, etc. The possibilities are endless.
Really, there is no substitute for an educated patient when it comes to lyme disease. So, study the Burrascano protocol and learn how this disease is treated.
I don't believe in Dr. J's pulsing protocol. I and at least 5 of my friends got well by following the Burrascano protocol meaning that we all took our antibiotics every day.
I was symptom free in 8 months but had to continue treatment until winter was over. So, all told I treated 13 months with my Burrascano type doctor.
However, I had gotten lousy treatment from 2 previous doctors for a total of 2 years. That was basically with amoxicillin alone.
I must tell you that very, very few people who get rid of lyme disease continue to visit LymeNet. I am one of a very, very small number that stay here to help people.
So, don't expect lots of cured people to reply. They are out living their lives, trying to forget about lyme most likely.
Welcome to LymeNet! I have often told people that if you don't like taking antibiotics, lyme is NOT the disease for you.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Thank you for your reply and I will study the guide. I have heard good things about pulsing along with scientific evidence as to why is works. Although I know of no one personally and we can be or say anything online. I also think the pulsing just makes me happier because I hate drugs and the thought of taking them. Thanks again.
Posts: 7 | From Florida | Registered: Jul 2017
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
I'm symptom-free treatment-free too, 100%, for the last 8 years (I'm 50 now)
And so is my daughter (13).
It's not that I hate drugs, but more like 'my body hates drugs'.
I over react (it feels I get most of the side effects....), then feel worse than before, have tummy pains with many drugs, feel that re-building my health after drugs is harder than if I hadn't started taking them....
So we did that drug free, practically.
Antibiotics played a very little part on my healing and my daughter's ( 1% is already too much).
Dr. K said recently that if you got a fresh bite, short term (weeks) doses of doxy or antibiotic combinations seem to be working for some still (not all though).
But after that short initial period, if you still have symptoms, continuing antibiotics does not heal anymore. He speaks out of clinical experience, not scientific papers.
He's the guy I owe my health, mostly. I was not treated by him, but by his followers here in Germany and Switzerland.
They RARELY use drugs, because of the set backs, and due to the microbiome (gut and everywhere else).
I would read all Buhners books on herbal treatments, get many herbs, and start from there, as herbs do not wipe the flora and have much less side effects than drugs.
I took LITERALLY hundreds of substances. It's not exaggeration. So don't expect me to make a list.
The list is not important as the SEQUENCE of the treatment, in my opinion. Fix a couple of problems in a certain sequence, is the most important, because treatments, herbs, supplements only work when you need them.
Sometimes you take one herb, feel nothing, then 4 months later the same herb does miracles.
The only drug I used to have in my closet was paracetamol. It kept expiring, unused, so I gave up buying it.
Now the only drugs we have is some topical cream my husband was using when he got gout. They must be expired now.
I never took drugs in regular base because my body hates them.
We live in tickland, full of infected ticks, near the Black Forest that if full of lyme MUCH longer than you guys in the US.
Documented history of EM rash after tick bites exist since the very beginning of the 20th century.
Arthritis in that region existed for many decades, probably the whole of the 20th century. Dr K worked there in the 70s and the doctor he was helping knew from which region a person came (which village sometimes) only by the symptoms the person presented.
This was due to tick infections, coinfections, Borrelia species causing different health problems!!
So lyme has been here with us for about 120 years at least, according to medical documentation.
We believe that the only thing that can fight such infections is the immune system, a healthy gut, a healthy lifestyle.
We get bitten every single year, as we live in the country side. Many times a year.
Older statistics say 25% of ticks are contaminated with Bb in the area I live.
This is official statistics, so count more, as exams are not that accurate.
I got 6 bites THIS YEAR 2017, my daughter 3. Attached ticks. It means, statistically, my chances to be infected with Bb are 150%, my daughter 75% until now. Just for 2017.
Tick season has not ended, unfortunately.
Why we don't fall ill anymore?
Exactly like all our neighbors, all of them are constantly bitten but do not fall ill.
Before, one bite was all we needed to be bed bound or wheelchair bound. We lived hell, on and on, reached remission, then relapsed, then got bitten again, and again...
Our only chance of survival, if we would like to live here longer is to treat the immune system.
No drug can do that, in my opinion. ONly a fully holistic treatment can do that.
That include herbs and supplements, lots of pills, sometimes but all far from being drugs (like Omega 3, chlorella, bear garlic, freeze garlic, propolis, royal jelly, MSM, Vit D3, and Buhner's herbs, in case we get active infection).
I also use infrared, homeopathy, and energy medicine, sometimes, on a daily base when I want to treat something (like now, we're trying to correct the HPU / KPU problem).
For me, my idea is to build my body defenses up so that it heals by itself.
I get bitten by fleas (cat fleas are also contaminated with bartonella and I'm bitten by them many times a year too),
by many mosquitoes (that also have Bb, confirmed by research),
and by ticks, not to say of microscopic insects that are known as 'aoutat' or chigger (red bug) in summer.
My daughter too, so how can we live if we only treat with antibiotics?!! Spending our whole lives on antibiotics?
That is not even possible for her, because of multiple food allergies.
Antibiotics increase these food allergies almost for sure.
If you see what happens in this forum after long term treatment of lyme, you will see that allergies are a big problem.
You may think 'fine', if you have just one allergy.
But when the list increases to the point it gets hard to find what to eat, you start to fear for your life.
Multiple food allergies are sometimes even scarier than lyme, in my experience.
then you see children with extreme nutrient deficiency, osteoporosis in early age or alike...
No, it's not a life I want for my child.
Anyway, I would follow my intuition and go for what I feel it's right.
Of course, we do make mistakes, it's somehow trial and error most of the times, but doctors also make loads of mistakes.
Statistically, medical error in Wikipedia is the 3rd leading cause of death in the States! Only after cancer and heart disease.
I'd rather die after my own bad treatment than die following a doctor I don't trust! It's just a joke...
Posts: 6199 | From Brussels | Registered: Oct 2007
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
Dozens of US citizens come every year to Paracelsus, almost all of them, after taking massive doses of antibiotics for years.
They do not use antibiotics for lyme, but nosodes.
Their approach is very similar to dr. K I mentioned.
Posts: 6199 | From Brussels | Registered: Oct 2007
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
At Paracelsus we frankly don't view Lyme as a distinct disease.
Instead, it is a syndrome of symptoms commonly associated with poor health, especially of the immune system.
The test for Lyme disease only shows whether a patient was ever exposed to Lyme, which for a healthy person is just another minor infection.
While a Lyme exposure may have added to the burden on the body, so may have other infectious agents.
These infections are opportunistic, preying on the weak.
Rather than focus on strengthening the body, as we do in biological medicine, conventional treatment adds to the problem.
Massive doses of antibiotics compromise the immune system, and toxic bacteria then flourish, overwhelming neurological and organ function and eventually debilitating the patient.
And that is usually when they come to us.
Our Stage 3 Lyme patients are always quite ill when they arrive.
In every one of them we find significant toxic loads, mainly heavy metals, chronic viruses, and severe imbalance in their inner metabolic milieu, ...
plus adrenal fatigue and even neurotoxic bacteria in their intestines – all due to antibiotics!
Very often, as a significant co-factor, these patients have a serious impairment of their metabolic detoxification pathways as well insufficient essential fatty acids and trace elements – issues for which conventional doctors, even "Lyme specialists", don't even test!
Our treatment for Lyme patients is very successful but takes time to undo the damage from years of poor health and antibiotics.
You simply can't rebuild the body overnight.
But we have countless cases considered incredible by the treating physician at home.
Patients who had almost given up hope resume their normal lives.
This is why our Lyme practice grows so dramatically – it isn't really because of an epidemic of the disease.
The epidemic is of treatment failure.
Posts: 6199 | From Brussels | Registered: Oct 2007
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posted
I became symptom free after 10+ years of hell following the approach TF took. Some great advice there.
I understand your questions, however, a poll of treatment types and duration will not help you for the various reasons mentioned. I would not advise pulsing until you have been symptom free for several months, and only with certain types of meds.
Posts: 184 | From CT | Registered: Aug 2006
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posted
I am symptom-free (cured by the medical definition).
I tried abx for almost two years, but every time I reduced them and switched to herbs, or even switched to lower abx and herb combinations, I declined.
I went to Germany for photon treatment (the same kind of treatment Brussels did). When I got off the abx, I was almost too sick to go. Three weeks later, I was the best I had felt since I got sick. I continued the treatment for a year at home.
I also addressed secondary issues like gut problems, parasites, mineral deficiencies, heavy metals, MTHFR, food intolerances, etc.
So now you have a couple people who got better with the natural/energetic treatment route, and a couple with the abx route. It's really up to what resonates with you.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Thank you for your replies. This is the most exhausting part of this which way to go and what to do...I do know going over seas for treatment is out I could never afford that, barely affording what I am or am not doing now. Tooooo overwhelming but again thank you for your replies and knowledge.
Posts: 7 | From Florida | Registered: Jul 2017
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posted
I have a friend who paid tens of thousands more for her treatment in FL than I did going to Germany. My German treatment, including eating out one meal a day, travel, car, lodging, doctor, etc., was less than $5000.
I bought the $8000 light, which brought it to $13,000. Total. I treated on my own after that, which included a lot of reading and deciding what to do. Many prefer to have a naturopath for that.
Now, many buy the $1700 light instead of the one I bought.
I'm not trying to talk you into it, I just want you to know that it's not as expensive as it sounds. Medical care over there is cheaper. People on the board have lamented that we don't have it in the US. Even if we did, it would still likely cost less to go to Germany.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Also, the photon treatment is not stand alone. There are other things you have to do to get well. It worked on the borrelia, which made it easier to treat all my other issues.
Also, I completely agree with TF. You have to exercise. Whole body strength training. I used classical Pilates on the apparatus with springs for resistance. I would not be well today without exercise.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
I shouldn't post since I'm not cured but just to say thanks for asking what I wanted to know too.
During 20 yrs., neither route (medical/holistic) cured me; my practitioners didn't combine abx nor use Buhner's herbs (just NutraMedix and many others), so neither was enough. I am open to what would work.
Just do not give up though it's overwhelming. Peace. One day at a time.
Posts: 30 | From northeast US | Registered: Jun 2017
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posted
I am 90 percent better. I treated with high dose antibiotics and then switched to the byron white herbs. I am now working, exercising and enjoying my life.
I never so much as took a tylenol before lyme hit. That all changes once you start antibiotic treatment, supplements and probiotics.
I agree with TF also-the Burrascano strength training protocol is key.
Good luck to you
Posts: 88 | From new england | Registered: Oct 2016
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I was symptom free for over six years (recent relapse or another infection).
I did high dose antibiotics for Lyme and company.
It took 3 years of treatment, but was as close to "normal" as I could be.
Hoping to be close again real soon.
Hang in there.
Posts: 6250 | From Louisiana | Registered: Oct 2006
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***Is it normal for someone to be too weak for abx.? PLEASE reply if you know.***
20 years w/ Lyme, saw 8 LLMD's, Lyme naturopath/currently, want to do abx "right" for once (Dr. B's protocol, mixing Rx's), etc.
But I'm starting into a pre-relapse state (had 4 relapses, can't do another).
My 3rd relapse started with 25mg diflucan, one pill. A friend was able to keep on it.
In the 4th relapse, I couldn't take herbs w/ alcohol base. Using NutraMedix Samento caps for a couple years+. Using Byron White's on soles. GSE pill. SerraPeptase.
HI EVERYBODY! How shall I recover?
Posts: 30 | From northeast US | Registered: Jun 2017
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posted
whew - can you start nourishing yourself with nettle tea?
Do what you can to make your terrain stronger - like grounding and a non-inflammatory diet to help stop cytokine storms.
As for your question: "***Is it normal for someone to be too weak for abx.? PLEASE reply if you know.***"
I am adding it to this reply so as to not lose your desire to know opinions.
Posts: 764 | From Northwest | Registered: Sep 2014
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Hi gnsiday,
I am not cured, nor 90%.
But I just had to reply.
I had Neuro Lyme for 4 undiagnosised years. So very sick. I wasted 6 months with inadequate treatment from a LLNP. Got LLMD from lymenet that treats with high dose multiple antibiotics. After 8 months, I m at 75%. This is remarkable.
Please listen to fellow posters. They speak the truth.
To whew,
I could not handle herbs, at all. Even at low doses. No no no. To strong for my body. Antibiotics are no walk in the park either, but for some reason, I was able to handle them. Herxs made me want to stop but I plowed through.
Antibiotics are working miracles on me, knock on wood.
Good luck to each of you.
Posts: 2977 | From Florida | Registered: Nov 2016
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
Bonnie, so happy for you!!!
It's amazing how our bodies are so different. Knockign on wood, you'll get off this awful relapse!
Whew, my problem was like yours. I could reach remission after INTENSIVE treatment, but kept relapsing... On and on again.
What stopped my relapses and my daughter's relapses was photon + nosode therapy. For some reason, it worked amazingly well specifically for BORRELIA relapses.
Both of us stopped relapsing after that.
Let's say, during these last 7 years, I think I repeated shortly the therapy 2 or 3 times with my daughter (it means, in total, about 30 minutes of treatment in 7 years), and for myself, about 2x so far (20 minutes in 7 years).
As we did not fall ill, I don't even really count as a relapse, if you see what I mean.
Day 1 of symptoms -> energy tested 'Bb relapse' -> photon treatment of 5 minutes -> stopped the progression of symptoms 100% -> repeat the treatment for 1 or 2 times more in the next 2 or 3 weeks -> we're done.
that happened about 1 or 2 years after we reached remission, in 2009. The last 3-4 years, we don't even touch those Borrelia nosodes any longer.
Since lyme went into remission, we are trying to solve other problems. Like allergies, low immunity for other diseases (mostly viruses and candida)..., trying to treat the KPU, mineral absorption problems, etc.
I guess, all goes back to the same point: gut problems, microbiome imbalance, excess of toxins, detox pathways messed up, causing immune problems.
The good point: it's slow, but we see progress.
the problem is not Borrelia and pathogens only. It's basically the immune system, I think.
I hope you find your answers, Whew. For us, it was photon therapy (at least, it solved the Borrelia problem).
My body hates antibiotics. I usually can't finish even a course of abx when a dentist prescribes. In the last 5 years, I simply do not touch drugs any more.
My daughter is abx free since the age of 3, I think. She never touched a single dose of abx after that age. She's 13 now.
Posts: 6199 | From Brussels | Registered: Oct 2007
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