posted
So I finally got my CDC positive test, even though we all knew this whole time I was sick. I am treating with natural herbs and homeopathic meds.
What should I do next? Does anyone recommend utilizing the 30-60 days of IV antibiotics through my insurance? Does anyone know exactly what they cover? Is it one antibiotic, or is it several?
Has anyone used IV therapy of any Lyme treatment through Aetna?...Please share you thoughts.
And lastly...has anyone ordered or had their Doc order IV's through mexico? Is this affordable for cash paying customers? Thanks! Posts: 148 | From AZ | Registered: Sep 2011
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posted
I never had IV, so I can't answer those questions, but you do need to get serious about your treatment.
I don't see any benefit of getting one month's worth of IV abx.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
A CDC positive does not mean that the person needs IV treatment. Usually, IV is given to the sickest patients--wheelchair bound, bed bound, having seizures, or total zombie (not you since you can still post on LymeNet).
So, orals will likely be all you need. I and all my friends got rid of lyme and coinfections on just orals.
The main thing is to get a doctor who follows the Burrascano protocol. That's how I and all of my friends got well.
Many doctors SAY they follow Burrascano, but they don't really. Many are afraid to prescribe his high dose combinations of antibiotics.
So, contact the support groups in your state and nearby states (see Support Groups on left side of page) and find out who prescribes like Burrascano recommends. Plus, if they follow Burrascano, they will have you take supplements and be on an anti-yeast diet. The fourth thing they will do is tell you that exercise (a certain kind--non-aerobic) is necessary to get well.
So, try to find a doctor who follows Burrascano. You may have to travel out of state to find one. Be willing to do so. Some top notch lyme doctors will do telephone appointments with out of state patients after the first in-person appointment.
Sorry I don't know who the good docs are in your area. I just know east coast.
Read pages 20-21 of Burrascano to see what he says about IV therapy. He recommends it for those who do not respond to oral therapy, those who took steroids while infected with lyme, those with major neurological involvement, those with lyme in the spinal fluid, etc.
So, hopefully, you will never need it. It is certainly no magic bullet. In other words, many have gone on IV and not achieved wellness. Even if you need IV, you still go on orals during and after the IV. At least, that's what good lyme treatment will be.
Being on just one IV antibiotic will not do much. That's what a non-lyme literate doctor will do.
Insurance pays for all prescriptions generally. So, they will pay whether the lyme doc has you on 4 meds at a time or just 2 or one. Being on just one med is NOT good lyme treatment, however. You will see that in Burrascano. Lyme can evade one med by changing into a form that that particular med cannot reach.
The main thing to understand is that you need a top notch lyme doctor to have the very best chance of getting rid of this disease.
Here is a post on what makes a top notch lyme doctor. You may want to read over it to understand how much the doctor's expertise is involved in getting rid of this horrendous disease:
posted
Thanks TF..you brought up a lot of good points to consider.
Posts: 148 | From AZ | Registered: Sep 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Even with a CDC positive test, that is not a golden ticket to adequate treatment by IDSA standards.
Some IDSA ID doctors would still require a lumbar puncture to also be positive (as it's a terrible test for lyme due to inaccuracy, that is not likely to happen).
Even for those IDSA aligned doctor who may not require the lumbar puncture (spinal tap), even with a CDC positive test, you may still only get 2 weeks or a month, tops, of one single oral antibiotic and then declared cured, no matter what.
TF's post is excellent. IV abx are not the first step by any means. And what insurance might cover for either oral abx or IV is certainly not at all even going to touch all that is required.
So, still try to fly under the radar with that so that you can at least get the most coverage possible -
- just don't assume that CDC positive will take you very far in the regular medical world convinced that lyme is quickly and easily treated and they then cut the patient loose regardless of how they respond.
They would not assess other tick-borne infections, a necessary step. They would not consider that with just the most used antibiotic for lyme, that can set a person up for chronic lyme.
I hope you will be seeing an ILADS-educated LLMD who is experienced with the Burrscano protocol, and that they can individualize treatment to your case. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Infect Drug Resist. 2011;4:97-113. Epub 2011 May 3.
Evaluation of in-vitro antibiotic susceptibility of different morphological forms of Borrelia burgdorferi.
Excerpt:
. . . Conclusion
Antibiotics have varying effects on the different morphological forms of B. burgdorferi.
Persistence of viable organisms in round body forms and biofilm-like colonies may explain treatment failure and persistent symptoms following antibiotic therapy of Lyme disease. =========================
Liver support & Adrenal support is also very important before and all during treatment. Most LLMDs are well aware of those methods. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
�� Nutritional Supplements in Disseminated Lyme Disease ��
J.J. Burrascano, Jr., MD (2008) - Four pages -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Q posed: "Doc order IV's through mexico?"
Well, that would certainly put the doctor at a huge risk considering their medical license, regardless of the drug or its form.
Make a circle on the map around the town where your LLMD is to be. Contact all those lyme support groups within a reasonable distance to find others who may have your same health insurance. Compare notes on coverage and how to not "red flag" yourself.
Coverage by the same company, but in different states, may vary. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- When you call to arrange an appointment with a LLMD, ask the receptionist what the doctor might suggest in the mean time, while you wait for the appointment date.
Any certain supplement, book, article?
Ask if the doctor suggests a gluten-free diet for all patients. If so (well, even if not), you might go ahead and get started on that but you may also want to first get a DNA test to rule out genetic celiac.
The self-care guidelines and the supplement list for Dr. B is good to get going with but the supplements there are for support.
As you wait for the LLMD appointment, there may be additional supplements recommended by the LLMD -- such as ALLICIN or Olive Leaf Extracts -- as these have some antimicrobial properties and could help to some degree during the waiting period.
GARLIC / ALLICIN LINKS -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- The LLMD with whom you schedule may well be familiar with both Zhang and with Buhner.
You might look over their books and websites and then ask the LLMD's office if they might suggest one or the other during the waiting period between today and your appointment date.
Even if you don't go with either, IMO, it's still really important to have both books as each contains fabulous information that will be of help regardless of which supplements you take.
Especially the Buhner "Healing Lyme" book, as it has lots of information about how lyme and other TBD (tick borne diseases) work. It also helps to educate about herbal safety and different forms.
Also, be sure to get onto the list to fill any cancellations.
Good luck.
=====================================
Allicin (from Garlic), Coptis, Smilax are key here:
Buhner ("Buh" is pronounced as first syllable of "beautiful") highlights various herbs - along with fabulous explanations of how lyme & other tick-borne or stealth infections work.
I learned so much from this book, even aside from the herbal detail. ----------
Buhner�s recommendations for professionals familiar with his work. Scroll down for list. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- If you just might have access to a Rife machine, through someone in your lyme support groups - or a LL ND near you - you might also consider RIFE for the meantime, until you can get into your LLMD.
Since there can be such a long wait (months, often), I just want to offer detail that can serve you in the meantime.
Here's just one more thought: -------------------------------------------
LL Naturopathic links here, too. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Looking back at your posting history, I see that you first posted in September to find a LLMD.
Last month you posted that you have still not found one in your state, after much searching.
I hope you can finally connect to one. Keep going.
Edited to add: taking another look at your treatment history, I see that you have been treating with a homeopathic practitioner for 2 months with various methods.
Unless they are ILADS-educated and keep up with all the ILADS conferences, etc., they may not have the science they need about how lyme works. I hope they are/do. Still, I'm not sure any herbal approach works alone.
Homeopathy is best suited for symptom relief and support. Classical homeopathy does not address infections.
Herbs are not homeopathy but some homeopathic practitioners also use herbs.
Not all homeopathic practitioners are necessarily also NDs. Also be sure yours is - or with similar advanced medical education & a degree in their field. That education really matters.
Regarding a post where you said you are getting a CD57 every two months - I just don't put much faith in that test. If money is tight, you may want to put it toward a more aggressive approach.
I looked at your protocol in your "Good News" thread and I'm sorry to say that it does not look like it's strong enough to do the job.
Garlic seems the main antimicrobial there and unless you are on the full force Zhang protocol, it may have little effect (based on my experience). Even then, other stronger herbs are always on board and abx may also be incorporated.
Has the practitioner with whom you are working seen many other chronic lyme patients into a good long and strong remission? Hope so.
I hope you can find the best ILADS-educated expert(s) possible.
Good luck. -
[ 07-31-2012, 02:37 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Thanks Keebler. This is a lot of information! LOL....I have actually thought about looking into a Rife Machine. I believe I also need to test for co-infections..or do most of you just recommend treating them all anyways?
I have looked into the Zhang protocol and plan on talking this over with my Dr. Has anyone else used it with success?
My Dr. treats many lyme patients...but I believe she wants to complete the training to be ILADS.
I do understand that the CDC positive doesn't really mean anything. But to me it says...I knew it all along..even when all those other Dr.s doubted me. I think some people in my family were thinking I was crazy. Now they are shocked saying "I can't believe you were right" Hurts to know they had doubt this whole time!
Anyways thanks again Keebler and everyone. This is a lot of information, but I will spend time going through it.
Posts: 148 | From AZ | Registered: Sep 2011
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