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Posted 6/3/2017 4:23 PM (GMT 0)
I got bitten by ticks 19 years ago but my doctor did not recognize Lyme back then and didn't treat it... For ten years I didn't experience many symptoms except occasional pains which were kind of random while exercising hard. In 2009, I started having pain in my left ribs and back under shoulder. This was uncomfortable but I lived with it after CT showed nothing. Then in 2011, I started with constant nausea and bile type diarrhea. I had every test in the book and because of a HIDA scan they removed my gallbladder of which the surgeon said it didn't look diseased. It didn't help and I lost 30 pounds because it was hard to eat. I put most of the weight back on after 9 months but still got occasional flare ups. I also started with constant neck and lower back pain which was determined to be herniated discs, arthritis and some stenosis. Then after the flu this January, I developed a constant headache and MRI showed some white lesions which were said to be slight ischemia. After years of misdiagnosis, I went to a psychiatrist who did the western blot and it came back positive for Lyme disease.i have been researching the past two weeks since... I saw an LLMD( only one around here) but he has some medical issues because of a recent stroke so I see another in Arkansas in late July. Has anyone done just herbals programs ( Cowen, etc) and no antibiotics and gotten better? I am 67 and have terrible digestive issues... Just want some suggestions. Have tried the pulsed rife lights twice. I must have stayed to long because it made me worse for a week-just feeling somewhat better...will do another post for that...
Posted 6/3/2017 4:41 PM (GMT 0)
Hi Cokie,
I live in Arkansas, and I can tell you that you don't want to see anyone in our state that is treating these infections with abx. There are no real LLMD's in Arkansas, even though there are a couple of doctors calling themselves LLMD's. They don't follow ILADS treatment guidelines.

What you experience with the Rife is called a herx - it's an intensifying of current symptoms or new symptoms showing up due to the die off of the bacteria because they release toxins as they die. We always encourage members to help their bodies detox. You can find some helpful information in the "new to Lyme" thread about detoxing as well as this site:​​​​ ​​​http://www.tiredoflyme.com/detox-methods.html​​

There are quite a few of us that have relied on just herbals to heal, and we have done well. I'm one of them and although I healed, I got reinfected, so I'm back in the fight, using herbals only again.

I would encourage you to start to work on your diet - no sugar, basically low carb, lots of vegetables and high quality meats. You will need to use probiotics as well, and there are many brands to choose from. If you have one that you know works well for you, you may wish to start there, but you 'get what you pay for' with probiotics usually, so go for the ones with the most strains. I prefer to use kefir as it has the most number of strains of good bacteria and works well for me.

Do you live in Arkansas, or near by? We can help you find a LLMD if you wish to go that route. You can use an experienced herbalist to help you through any of the herbal protocols, and depending on where you live, someone here may even know of a good Herbalist.
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Posted 6/3/2017 6:21 PM (GMT 0)
Hi cokie -

Welcome to the forum! I can't add anymore than Traveler's expert post - she's your best bet for info you need immediately, locally, herb-protocols. But glad you found us - the board and its members are a wealth of info.

Please don't hesitate to ask any questions -

-p
Posted 6/3/2017 9:22 PM (GMT 0)
I am so grateful I am on here...when I was so sick in 2011 with gastritis, IBS and colitis, I met friends and found and gave support. This disease is so scary! I think I am going to take your advice Traveler and start with herbs.. I am already gluten, dairy and sugar free...I do take a good probiotic I think and it has helped my IBS... have you heard of Jay Davison? I live in Lafayette-grew up in New Orleans---where in Arkansas do you live?
I am so sorry you got reinfected---how do you know that?
Is it possible to do this slowly and gently because that severe herxi
Posted 6/4/2017 12:26 AM (GMT 0)
I'm in northern Arkansas, up in the hills.

No, I'm not aware of who Jay Davidson is.

It was pretty easy to recognize the symptoms of Lyme and company all returning, as I have lived with them for most of my life. I was infected by the age of 7 and didn't find any real help in healing until I was 47. I was healed at the age of 49, and reinfected by age 51. LOL. Not much time was in between for me to forget what it felt like having those symptoms.

The only way to go is slow!! At least that's my motto! I hate herxing and don't tolerate it much any more, so I take it all very slow. I start on very low doses (usually on a tincture and I start with only 1 drop once a day and slowly build up), detoxing quite a bit daily and stopping my treatments any time I feel the herx getting the better of me.

If you choose to use herbs, please do a full protocol, and ask for help along the way. Someone on here is usually using the herb and can give some guidance.
Posted 6/4/2017 12:30 AM (GMT 0)
I also wanted to let you know that I removed your post from the "new to Lyme" thread, as we are trying to keep that for informative posts only.

Cajungirl hasn't been around since 2008 (? I believe). I took over for her as a mod and she pretty much left the forum due to her health continuing to worsen. Of course I have no way of knowing if she is still in Louisiana or not any more.
Posted 6/4/2017 6:14 AM (GMT 0)
Jay is hosting a lymesummit 2 should be good info .his wife has it
Posted 6/4/2017 11:39 AM (GMT 0)
I know -I read about him.. do you like his protocol for ridding the body of Lyme. A friend told me about him...have you done any consults with him.
I like traveler's approach-SLOW-I can't handle that extreme herxing either.
Almost everyone who has Lyme who I have spoken to says they did antibiotics for a time and then turned to herbals... I am really afraid of this disease after all I have read, yet, I think long term antibiotics are just horrible for our bodies
Posted 6/4/2017 1:26 PM (GMT 0)
Treatment choices are highly personal, so we are open to as many as we feel are safe and effective here, but I think it's safe to say that no matter what type of protocol a person chooses, we suggest taking it slowly. Herxing is hard on the body.

But, for someone that doesn't want to use pharma abx, this in no way limits the protocols still available - there are many alternative medicine protocols that many find helpful.
Posted 6/4/2017 5:22 PM (GMT 0)
What do you use Traveler-do you use Cowden, Buhner? Do you have someone who manages your protocol? (Naturopath?)
Posted 6/4/2017 5:24 PM (GMT 0)
Can you recommend one or two I should look at? There is so much out there and it is overwhelming.. have you heard of Dr Klinghardt in washington state?
Posted 6/4/2017 5:33 PM (GMT 0)
I am trying to use Buhner's, but am seriously considering going back to the Chronic Tonic, which helped me heal the first time as I'm still struggling with trying to get up to full doses of Buhner's herbs after many months.

From what I've seen on this forum is that Buhner's works for most people.

Cowden's comes next, but usually is only helpful for Lyme infections - many people transition over to Buhner's to heal the other infections they may have.

The Chronic Tonic is one that works for the least amount of people and I'm not sure why. It could be the strains we are infected with, or that our genetic makeup just makes this the wiser choice.

Yes, I have heard of Dr. K (we don't post Dr's names in public places to help protect them) - and while I have used some of his information to help me heal, I have never used any of his suggested protocols.

No, I have not had anyone that could help me manage my protocol once my first practitioner moved away. I've been managing it on my own for the last 3 years (first two years I was healed and then had adrenal and thyroid issues only, then got reinfected 3 years ago). This is far from ideal, but we work with what we have around us - and there are no doctors around here that I'm willing to go to for these issues. If I had a broken leg, I would trust them, but not with this - and that's not to mention that I have been turned away from every doctor in my community with the statement that "the doctor is not interested in taking on such complicated cases right now" - somehow I just don't believe that they have suddenly chosen to start seeing Lyme patients. =/
Posted 6/4/2017 5:36 PM (GMT 0)
Many LLMDs near me are refusing chronic patients. They will only treat those with new bites.
Posted 6/4/2017 5:41 PM (GMT 0)
Cokie - I was antibiotics for a few years and did get better, but not fully, I'd say about 85%. But as better as I felt, I would have something, like a headache, happen.

After a stressful year, everything came back, recently. So I am trying Dr. Rawls Vital Plan. It's too early to tell if it is "working," but I can tell you some of my symptom, expecially anxiety and depression, are much better, at least for now. Rawls' plan is based, a lot, off Buhner, which Traveler mentioned.

As symptoms come and go, I will wait and see if the ones I have seen improve stay that way before making judgement. Hoping the best for you.
Posted 6/5/2017 1:03 AM (GMT 0)
Thanks for sharing your journey. I am just not sure how I can tolerate antibiotics because one of my most troubling symptoms is nausea--followed by IBS-d
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