posted
After a year of 4 different Abx protocols without success and experiencing significant adverse reactions such as Claforan IV after 3 1/2 weeks liver rejected Claforan and sent me to ER septic,
10 weeks of 5,000 Mgs of Amox a day my GI system arrested transporting me by ambulance to ER...distended and toxic.
Rifampin & Azythromyacin after 8 weeks did nothing and 30 days of doxycycline awarded me no relief.
All of these treatments together over the last year has shut collapsed my immune system, as evidcine of contracting an upper respiratory infection this past march, no abx would cure almost sending me to ER with Pneumonia.
My Lyme symptoms are predominatley neurological (migraine, bifocals at 38, vertigo, ears ringing and buzzing, short term memory loss, mental confusion ie directionally challenged, cardiac, OB/GYN; (3 miscarriages, 1 toddler death age 2.5),
orthopedic (broke a toe bone in foot after walking around the block without falling or injuring foot at all, came home took my shoe off and my pinky toe swelled up like a balloon turn black and blue as I say down and it was broken, low back, knees and hip pain) and GI related issues.
My symptoms are severe and the ABX hassle me more sick, like that's possible but it is....
My Husband and Mother have been scouring Lyme Tx books and finally came upon "The Tick Slayer." She was very sick like me and did one year of Abx Tx and became more ill. She finally started her own journey of how to get well.
She uncovered statistics that show that each Lyme patient who attempts and therapies has a 50/50 shot at recovery. A 1 in 2 shot of healing but those it doesn't work for t either kills them or injures them further and in permanent ways, like liver damage.
So after hunting and discovering holistic drs who went after the spirochetes through intense detoxification found that the bacteria can't form bio films they can't hide like they do from abx
and she actually achieved a place of healing, without revisiting abx in the future for reoccurring Lyme symptoms.
Has anyone in this online community had success with detoxification vs abx????
I am embarking on this same journey, detoxification. I met a gal who had done it: not the author of the book i am referencing: it took her 4 years it was just as difficult at abx Tx but it had an end and she's much better, she says healed.
At the same time my Mother poured through this book, this gal was introduced to me and had found a Dr who follows this kind of intense detoxification a protocol.
He is 4 hours from where I live. My husband and I are traveling today and I will have my first patient appt with him tomorrow.
The journey will be challenging and intense but for the first time I am hopeful that I will get to a really good place and my quality of life will be restored.
Just wondering if there are any other folks on here like me and what is your experiences like during detoxification?
I'm trying to prepare but I have had such extreme reactions to "standard" Lyme Tx that others haven't had I'm trying to gather information on what I should looks for or expect.
-------------------- Take your life back! Posts: 17 | From Southern Part of N. America | Registered: Sep 2012
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- 25-1/2 weeks of treatment is what I counted. If I counted correctly, that is likely not enough if you are still ill. I'm sorry to be so blunt or not say what I know you want to hear. I can't be thorough, even in reading all you write or in my reply.
My eyes just can't follow even medium lenght paragraphs but I made the mistake of going just to support methods years ago, with an otherwise excellent ND -- who said they know all about lyme and I trusted them. They were wrong and then I was broke and still very, very ill. Still am. Spent my options, mostly.
But the key points I've found through all this are:
Two "rules" IMO:
1. INFECTION(s) MUST BE ADDRESSED (directly, specifically, adequately) - "detoxification" alone is NEVER enough. Lyme requires atttention of all its forms, too. Antibiotics do not affect the cyst form of lyme, nor biofilm.
This includes all coinfections, parasites.
2. SUPPORT MUST ALWAYS BE ON BOARD - be careful not to think of "detoxification" as an event but, rather, ongoing support of the body organs that actually do the work.
"Intense Detoxification" can be very dangerous. Detailed - yes, that is good - but not "intense" as the body organs are best treated in accordance with their needs and rhythm. Some ideas of "intense" are for machines, not for bodies. Be very careful as to what all that entails.
The definitions and methods can vary widely, though. And different approaches work for different people. Some basic starting points:
LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too.
Naturopathic links in this set, too.
IMO, it's absolutely vital to consider why the Burrascano treatment guidelines incorporate all they do. Each step matters, even if approached differently but, again IMO, ONLY an ILADS educated doctor will know the science of lyme well enough. They must be expert in the "science" of lyme - and all that goes with that. It's very complex.
If you are looking for other ways, see the "How to Find a LL ND" and "RIFE LINKS" here for more detail about adjunct methods.
And "Why You Need an ILADS educated doctor, whether LLMD or LL ND"
MOLD issues, other issues also explored there.
Various liver dysfunctions, porphyria, MTHFR issues - all discussed here, too.
Heavy Metals also need to be considered but, again, only with an ILADS educated LL professional. They need that background in how the tick-borne infections work. -
[ 05-13-2013, 02:43 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Going back over your note a bit (I'm sure I missed a lot) . . . I see you are traveling to this new professional for an appointment tomorrow.
I wish you the best. Hopefully, this will be a good match and their education and experience is enough for someone with a case like yours.
Even if somene has not had what I needed, I found I could usually learn something anyway - or they might be able to fit a very particular niche of the treatment plan, along with a LL expert.
I still - and will always insist - that an ILADS "educated" fully tick-borne infection-literate doctor must be on board to steer the ship (or, if one is on one's own, infections must still be addressed directly).
There is still plenty of room for individualized and adjunct approaches.
RIFE sounds especially appropriate for someone who has trouble tolerating treatment. Many have done very well with it. -
[ 05-13-2013, 03:01 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
Hi - if you can type in smaller paragraphs, it will be easier for many people to follow you here.
It's the concept of the situation - it's not abx vs detoxing.
When I went to see one of my first LLMDs, they explained treatment happens in three categories: kill/deter the organisms, detox, and fortify the body. All three need to happen, some more extensively depending on length of time we've been exposed.
We're all different when it comes to any treatment that works.
For me, I like detoxing in a far infrared sauna tent - you can get them on amazon or ebay. I can handle heat. I sit in it for around a half hour till I sweat, then shower off in alternating warm and cool water. Saunaing also stimulates internal bile flow, which is also a part of the detoxing.
My LLMD also recommends that we take Takesumi activated charcoal, 1-2 scoops/day with meals, to aid in detoxing.
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
posted
I am so glad that you are feeling hopeful. I have read many posts on this site where people started out having intense reactions to antibiotics.
It turned out that they could not detox for various reasons like genetics. Once they worked on getting support products to detox, they began feeling better.
Then, they were able to handle treatment if that was what was required...Slowly, they ramped up their medications. It has worked for some people.
I can't emphasis enough how important feeling hopeful is. That feeling gives you the courage to keep fighting.
May God bless your appointment tomorrow. I pray that it is a fruitful one.
Posts: 538 | From kentucky | Registered: Nov 2011
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic