posted
I may have had lyme for 5 years. It was diagnosed as CFS.
My question, if I have had lyme for this long, is it still treatable?
I can't do antibiotics because of yeast, can't do Cowden's protocol because the alcohol in the tinctures irritates my Interstitial Cystitis so I'm going to start Buhner's protocol (hoping it won't irritate my IC. But is it really feasible to get better, will I be left with illness if I had Lyme and it was untreated for so long? I don't want to suffer through lyme die-off and be left with CFS.
Igenix results from two years ago: IGM 34 ING 39 ++ 41 IND 66 +
IGG 41 IND 58 ++
-------------------- lisa theobald Posts: 111 | From madison wi | Registered: Nov 2008
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Sure! I had it for 30 years before I was diagnosed. I was extremely ill .... and I'm about 90% of normal now with some days completely symptom-free.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Dawnee
Unregistered
posted
I've had Lyme disease for at LEAST 21 years. After a year of ABX (taking meds also for systemic yeast) I am at least 80% better than I was a year ago.. when all crap hit the fan with symptoms. CURED... I don't know. Nobody does honestly. Remission... absolutely.
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posted
You weren't diagnosed in time for a cure, however, your lyme can most likely be managed to a level of wellness where you won't care because you will FEEL cured.
Posts: 982 | From Florida | Registered: Feb 2002
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adamm
Unregistered
posted
You can stop the disease process, but I don't think the spirochete can be completely purged at any stage with what's currently available.
Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
I have chronic Lyme, but I am so much better off after treatment than I was before. I feel cured because I was in such horrible pain before it was unbearable. I can atleast work a couple of days a week, go for a walk..etc.
-------------------- God Bless You! Everything..is just my opinion. Posts: 6641 | From Michigan | Registered: Jun 2001
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Sometimes i find that people who think they're cured from long-term lyme after long-term treatment have a remission for about 6 months, then come out of remission and get back to the beginning again.
is that probable?
I don't know if I realy want to fight this if i'm just going to go through months of die-off, distroying my bladder beceause of herbs bothering ic, just for it to only go away for ahwile.
Have people on this board gotten 100% better permanently from treatment?
-------------------- lisa theobald Posts: 111 | From madison wi | Registered: Nov 2008
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posted
I had LD for 13 years and I'm about 90% better. This is about 3 years after diagnoses.
I am courious as to why you can't take the abx because of yeast. I eat lots of yogurt and probiotics when I'm on them. This helps me. I don't even do the no sugar thing. I also take breaks from the abx, very long breaks.
I take collodial silver with a nasal spray and garlique brand garlic when not on abx though.
Posts: 15 | From New Hampshire | Registered: Jan 2009
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I can't have yogurt because it's too acidic for someone with intersitial cystitis. I was on he anti-candida diet, took probiotics and diflucan and within 2 weeks had a yest infection that would not go away until 2 weeks after I quit the antibiotics.
I can't do natural antifungals like garlic or others due to my IC too!
-------------------- lisa theobald Posts: 111 | From madison wi | Registered: Nov 2008
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I had lyme, babesiosis, and bartonella for at least 5 years prior to diagnosis--more likely had it 10 years or more prior to diagnosis.
I completed my lyme treatment 4 years ago. I am still symptom-free, enjoying my life--the same life I had before lyme disease.
I still hang around LymeNet to point people to the good doctors. The doc is the key to getting and staying well, in my experience.
I went through a few before I found one who knew enough to get me well.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
You can get better. Many have done that.
First question: Can you tolerate diflucan?
And: have you ever used Olive Leaf Extract? It can help keep candida away even with on abx.
Whatever path you now take, be sure to cover this for at least 30 weeks (and be sure to assess and address an co-infections, too).
Buhner suggests at least one full year at a high dose of andrographis, etc. And he says abx are required for one of the tick-borne infections so be sure to be assessed for that (sorry, I can remember but it's in his book).
Andrographis can be very helpful but, be ready, it can increase fatigue dramatically - especially for the first few weeks. Yet, this is the most affordable of all choices. It takes a lot of work to get all the supplements from different places.
Since you can't do abx, it is best to see a LL ND (naturopathic doctor). Still, you may be able to do abx with the correct supplement supports. Some ND are ILADS members and, in many states, NDs can also prescribe some abx.
It is essential for a ND (who is treating any lyme patient) to be a member of ILADS - as it's essential to their understanding of the nature of the spirochete and the task at hand, so that whatever approach they take, they have the knowledge base upon which to work.
It's still important to study the ILADS guidelines, Burrascano's and Singleton's book.
She is an ILADS member and a ND (naturopathic physician), so she has knowledge of the unique nature of the spirochete and what is required but also knows all about supportive techniques.
The One Earth Herbal Sourcebook (Tilltotson, et.al.)
While the only reference to lyme is in the chapter about Sarsaparilla, this is an excellent resource book about the forms and functions of herbs. Liver and adrenal support herbs are described in detail here, too.
If you have a LL ND near you, that would be best so that you can have individualized care. Acupuncture is also very helpful as a support - it can help the herbs work better.
=================
While intended as support and not primary therapy, some of the supplements here are essential for lyme patients.
groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Yep you can get better-- Much Better-- I had Lyme and Babs for 18 plus years-
I feel Great Most of the time-- Took 3 yrs of good treatment--
Make sure to figure out if you have co infections and treat them too--
Today I walked 10 plus miles filming a Giant yearly party that Austin has- EEyoures Birthday Party -- plus I road my bike 15 miles there and Back- Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Jay, can you PM me or write what form of Glucosamine you took and how much? Seeing your post reminded me. Kind of off topic, but... Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
[QUOTE]Originally posted by Keebler: [QB] -
You can get better. Many have done that.
First question: Can you tolerate diflucan?
And: have you ever used Olive Leaf Extract? It can help keep candida away even with on abx.
I was taking diflucan but it wasn't enough to keep yeast from getting out of control on anibiotics, or keep it away, even with the candida diet and everything else. I can't do Olive Leaf extract, it irritates my IC. Or oil of oregano, which was given to me because my intestines and stomach have bad bacteria
I can't find a naturopath who has a clue about how to letalone treat Lyme in my area, especially how to treat lyme without irritating IC.
I've been tyring to follow Buhner, but within 2 days the Cat's claw turned my Bladder into one big pain.
It's hard - I am full of yeast and have gone throuh protocols, my numbers never showed improvement, having issues with herbals irritating my Interstitial Cystitis and putting my bladder in extreme pain (that and having to use the bathroom every second.)
Also, I'm on SSD, my husband just lost his job friday so things not covered by insurnace, bad! So most LLMD's, ND's, not covered, can't afford.
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