posted
I think I have had Lyme Disease for two years now. That's when my symptoms started. I wasn't diagnosed with it until a year later when I got very sick again and went to a new doctor. I haven't been diagnosed with any particular co-infections, but I really feel like I have Babesia and I could have more.
Are there alternative treatments for Lyme Disease and the common co-infections like Babesia that do work? I am up for something different than an extended, long-term treatment with oral antibiotics.
I have been on Artemisinin and Una de Gato (Samento) for a year now. I have definitely improved, but I still have many of my symptoms:
-severe headaches -vertigo -dizziness -fatigue -low grade fever that comes and goes -sleep disturbances (sleep too little or too much) -difficulty concentrating
I'm hoping something else could be more effective. Thanks for any help in this area!
-------------------- I was diagnosed with Lyme Disease in August 2007, but I now feel it was a misdiagnosis. I was finally properly diagnosed with Chemical Sensitivity in February 2011. My life has changed drastically since then. Posts: 128 | From Dallas, Texas | Registered: Jul 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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You have been on artemisinin for a year, now? Anything else in combination with the art for the babesia (Cat's claw is not so much for babesia) ?
Mono-therapy for babesia has a higher failure rate that combined treatment. Check your source and see if anything else was in the capsules that helped the art work better.
I assume you've probably read from several books about it and it's hard to just start over here not knowing how much you've already learned about it. As entire books have been written on babesia, it's hard to be thorough, yet concise.
Have you been under the care of a doctor during this time?
Can you get to a LLMD? There is a huge risk in trying to determine the root cause - and there are other stealth infections that should be ruled out.
A year is a very long time to be on artemesinin - was it full dose ? And, again, the combination matters.
I know very few of us can see LLMDs and we all do the best we can, but an expert would better be able to determine which way to go. But, we all do our best here to help.
If we knew where you stand with information, replies can proceed from there.
Have you read the ILADS guidelines ( www.ilads.org )?
Are you familiar with these authors: Burrascano, Schaller, Buhner, Zhang or Singleton (new book: "The Lyme Disease Solution")?
I'm sure others will be along more versed in this than I. It is good that you seek a change if you've not seen the success you desire.
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Heavy metals ?
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Also, there are some structural things in the inner/middle ear that can contribute to some of your symptoms.
Can you see a LL neurotologist ?
There is one condition, BPPV, for which the "Epley Maneuver" can help. more at this thread:
=================
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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This is a long post - and a series of them, too.
You might want to copy, paste and print so you have a reference of links. This is a lot of homework but I hope this will still streamline your search.
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Just be absolutely certain that the protocol is strong enough to address the infections - and specific to the spirochete of lyme and protozoa of babesia, etc.
Whatever medicines you take, they must cross the BBB (Blood Brain Barrier) so knowing the molecular weight is important (as Dr. Zhang details in his book - link below).
These are not like other infections and a thorough knowledge and respect is vital.
Even if you do a natural approach, you and your doctor must still read all the ILADS' research. You must know the behavior of the infections and understand the cycles and forms.
Support herbs and nutritional supplements are pretty much standard whichever path you choose, but be clear in the effect of each product you take.
Just "getting your body stronger" is not enough to fight this.
Most LLMDs use nutritional support and some LL NDs use antibiotics. Just as with many MD's, many ND's will say they know about lyme but they have barely a clue.
There are some ND's who are ILADS' members. That would be best. Starting with the ILADS guidelines is a good idea to have a grasp on the nature of this.
Some doctors are quite willing to learn, but it takes a very long time to get up to speed. It's best if you can find a doctor who has already treated many lyme/TBD patients and had success.
ILADS has DVDs and many article for doctors and patients.
The LDA, Lyme Disease Foundation, too, is a great resource.
The Bionic 880 is used in Germany and other places in Europe - We hear wonderful success reports.
Do not purchase a machine until you've read all the posts about this. They are very expensive, though, but still, if I were to be starting out with this, I'd go this route if funds were possible.
Nutritional support is still vital with this treatment and other modalities may also need to be used for treatment of heavy metals, etc. but this would be the main anti-lyme + co-infection part.
The sole reference to lyme in this book is with sarsaparilla (smilax).
However, this book should be the place to begin as it offers an excellent explantion into the language of herbs and their different forms (raw, tincture, concentrate, extract).
It also teaches us how our bodies function.
There are also full page descriptions on many herbs and help understanding the role of vitamin and nutrients in foods.
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PUB MED
When you see something of interest, this will be your number one search tool. You must realize, though, that much is not here and some of what is here can still be biased, especially in regards to lyme as most published works are from the IDSA standpoint.
You will find information from around the world here.
And you would cross search with lyme - and the with borrelia, - or malaria - and then with babesia . . . etc.
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[ 23. July 2008, 12:53 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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This is just one article illustrating the importance of treating chronic stealth infections adequately . Whichever method one chooses - serious and complete attention is required.
You also need a doctor (whether MD, DO, ND) who knows about the full range of chronic stealth infections as not everything is lyme and ticks carry a full range of infections.
You also need a doctor who fully understands the liver and endocrine/adrenal complexities the lyme + co. present.
Self-care must also be nearly perfect most of the time. More on that at the ILADS treatment guidelines.
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This excellent article explains a lot about what chronic neuroborreliosis can do.
It also details other chronic stealth infections, such as Cpn - and others - that should also be assessed in all chronic patients, especially those with neurological symptoms.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed here do to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" By Virginia Savely, RN, FNP-C
*****
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
i've had chronic lyme for at least a decade, probably longer than that, and i'm treating it almost completely naturally. it takes patience, persistence, a well-trained practitioner, an open mind, tons of research, and lots of different approaches, but yes, it is working.
do a search on some of GiGi's posts here for a wealth of info. read the book 'healing lyme' by stephen buhner. read up on dr. klinghardt's protocols.
posted
Thank you so much, Keebler, for all of the extensive information! I will have to start doing my homework and going through all of the information you posted.
I was diagnosed one year ago with Lyme Disease although I believe I had it for a year prior to my diagnosis. I have been on treatment under the care of my doctor, who prescribed me the Artemisinin and Cat's Claw.
I haven't been diagnosed with any particular co-infections, but I did take Alinia for two weeks at one point for parasites associated with Lyme Disease, and the Artemisinin does treat Babesia, which I think I have.
I am currently seeking a new Lyme-literate doctor for further treatment and diagnosis of any co-infections because my symptoms remain and I feel like I've hit a wall in treatment.
I would like to continue alternative treatment as much as possible.
I have read about BPPV when doing research on vertigo and dizziness, and thought maybe that could be my issue.
But more and more, I feel like it's a symptom of the Lyme Disease and Babesia rather than a structural problem.
My main symptoms (severe headaches, vertigo, dizziness) began at exactly the same time I was staying at a house in the woods and gardening and weeding outdoors all day (this was on a mission trip).
While there I was exposed to many areas which could have been tick-infested, so I feel like I was bitten by a tick then (although I didn't know it at the time) and had almost immediate symptoms.
-------------------- I was diagnosed with Lyme Disease in August 2007, but I now feel it was a misdiagnosis. I was finally properly diagnosed with Chemical Sensitivity in February 2011. My life has changed drastically since then. Posts: 128 | From Dallas, Texas | Registered: Jul 2008
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posted
Oh yeah, for almost three months now, I have been taking Meclizine twice daily for the vertigo and dizziness, and it does help a lot. My headaches coincide with the dizziness, so it helps my head feel better too.
I am hoping to get better treatment for what's actually causing it, so I don't have to continue to mask my symptoms with the Meclizine.
Structural problems in my ear could definitely be investigated. It's good to consider everything. I used to think I needed to see a neurotologist, but now I think it's more the infections that are causing it.
I don't think there is a LL neurotologist, unless you know about one.
-------------------- I was diagnosed with Lyme Disease in August 2007, but I now feel it was a misdiagnosis. I was finally properly diagnosed with Chemical Sensitivity in February 2011. My life has changed drastically since then. Posts: 128 | From Dallas, Texas | Registered: Jul 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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I have heard someone mention a LL neurotologist, I think on the east coast.
I am not aware of one, though.
My neurologist was the one who told me to get tested for lyme in the first place. But my PCP did the wrong tests.
My ND then sent them into Igenex and 3 TBD positives, but PCP would not acknowledge because she said "we don't have lyme in this state."
The neurologist was concerned that I could not get treatment but there was nothing he could do. He wanted to infuse steroids into my ears, though, and felt my case was so dire that it was the only thing that could calm the hyperacusis and seizures.
Knowing steroids are very dangerous with lyme, I opted out of that to flounder figuring out how to treat the lyme disease for years and years.
I hope you can find good treatments, good doctors.
. . .
Oh, electrolite - if you would kindly break up your posts in to 2-3 line sentences as they appear on the final post, they would be much easier to read by more people. It's very hard on the eyes to have so much squished together for many of us.
As you type, that would be about 2-4 lines on the composing page and then hit the spacer bar a 2-3 times in between to give it more white space between paragraphs.
posted
Keebler, to answer the rest of your questions:
1. I am on a capsule form of Artemisinin, so I don't think it's high potency. My doctor checks my liver regularly to make sure it's not being affected by the Artemisinin. I take it on an empty stomach with Inf-Zyme (good digestive enzymes to help it absorb into my bloodstream).
2. I have not read any books about Lyme Disease. I am just beginning to do research on the internet about it. I do know who Burrascano is, and I have read through some of the ILADS guidelines he wrote (I have it bookmarked!).
3. I'm not sure about heavy metals, but I don't think it's a problem. I could definitely get that checked by a new doctor (since my plan is to find another LL alternative-medicine doctor).
-------------------- I was diagnosed with Lyme Disease in August 2007, but I now feel it was a misdiagnosis. I was finally properly diagnosed with Chemical Sensitivity in February 2011. My life has changed drastically since then. Posts: 128 | From Dallas, Texas | Registered: Jul 2008
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posted
Thanks, Keebler, I edited my posts for easier reading!
I'm sorry your doctor said "Lyme Disease doesn't exist in this state." I live in Texas, so I know exactly what you're talking about.
It's good that your neurologist at least figured out what was wrong. What is TBD?
I know how steroids are bad for LD. Last summer, I took some prednisone because I thought I was having asthma problems and a respiratory infection, when now I realize it was probably the shortness of breath symptoms that are Lyme Disease.
I got much worse from taking the steroids and asthma meds instead of better. I got so worn down I had to be on bedrest.
Are you better or well now? I'm sorry you had such a struggle trying to find good treatment.
-------------------- I was diagnosed with Lyme Disease in August 2007, but I now feel it was a misdiagnosis. I was finally properly diagnosed with Chemical Sensitivity in February 2011. My life has changed drastically since then. Posts: 128 | From Dallas, Texas | Registered: Jul 2008
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