I am posting on Lymenet after a very long hiatus of three years. For everyone here on this board. There really is hope of getting better, but the road can be hard and you have to be consistent. I got really sick in 2002 with disseminated chronic Lyme Disease. I believe I contracted the illness or was reinfected in 2001. I primarily used aromatherapy to get better. The essential oils are antibacterial, antiviral, and immune-enhancing, AND they cross the blood-brain barrier. I started using them when I could not digest antibiotics any more. I used them externally and got probably 60% better. I always did a lot of heat therapy as well. Then I hit a plateau and started to use antibiotics (mainly minocycline and amoxicillin) in combination with the oils. I also did two weeks of IV rocephin in 2003. I still used the essential oils externally in combination with the antibiotics and I got 80% better. The antibiotics seemed to mainly keep the disease frozen at the state in which I started taking them, and the essential oils seemed to be what continued to help kill the bacteria. I had a lot of crazy herxes. Then I started taking Chinese herbs that promote blood circulation to improve the tissue penetration of the essential oils and antibiotics, and I got to 90%. Then I got tired of being on antibiotics, and decided to take very small amounts of essential oils internally (not more than 3 drops three times/day). I let the oils hang out in my mouth and enter my bloodstream through my soft palate, my inner cheeks, and under my tongue. I used these in place of antibiotics. I started to primarily use oils internally and only occasionally externally. I took some other supplements, too. I continued with the Chinese herbs, and I took vitamin C and garlic, flaxseed oil, niacin, n-acetyl cysteine, and a formula with citrus in it to speed up metabolism. I am now 99.9% healthy. That means- I lead a very normal life. I work. I am mentally stable and clear. I have a good energy level, except the day before my period when I still get a bit fatigued. I have NO pain. The only thing is that I have to take the herbal and vitamin and mineral supplements I am on daily, in order to maintain this level. I do feel some symptoms if I stop for a few days. But I figure a lot of healthy health nuts take a handful of supplements daily, also, so that is not so bad. And when I remember the HELL of the Lyme disease at its worst, I am incredibly grateful for where I am now. Anyway, please remember there is hope of getting better and leading a normal life. If anyone has any questions, I am happy to share what worked for me. I have also worked with other Lymies, and the essential oils have consistently worked for others, at the very least for symptom relief. I am an acupuncturist and I was very well trained in alternative medicine before getting Lyme Disease, but having Lyme Disease trained me a lot more in terms of how to deal with a baffling and horrifying illness. Anyway, I just want people to know that getting better is possible.
Farah
Posted by GiGi (Member # 259) on :
Hi, I remember you very well and am glad that you are doing well.
I read your post because I am well and have no problems reading it, but know that many others cannot read your post. Would you please break it up into paragraphs to make it easier for all.
Thank you.
P.S. I did some oils. But the smell got to me and I stopped all for that reason. They are tough on an injured autonomic nervous system. My doctor had to cut them back for that very reason. He even "banned" the guy marketing oils from his seminars, because most people could not tolerate it.
Is there a way to avoid this for sensitive people? and still get some of the benefit? Maybe you can help.
Posted by Lymied (Member # 6704) on :
Farah,
Thanks for coming back and posting! I am so glad you are doing so well. As well, I am interested in the essential oils. I have bought a few books on medicinal applications of essential oils and am hoping to try them in the future.
I am extremely interested in Chinese herbs and Stephen Buhner's latest book on tick borne illness and herbal treatments.
Today I went for a bike ride...it was the most exercise I have gotten in a year. No heart palps. and I feel so good. A bit sore but last year at this time there is no way I could have gone a block. I am still taking aggressive abx therapy but it is for less days a month.
Today was the first day I truly felt like I could get the upper hand of these infections. So to come home and read your post was affirming and inspiring.
Thanks for taking the time to post and heres to a Happy New Year!
Posted by psano (Member # 7785) on :
Farah, is there a specific protocol that you were following w/the essential oils, or were you just making it up as you went along?
If there's a protocol, where could I get a copy of it to read?
Thanks, Patti
Posted by Andie333 (Member # 7370) on :
Farah, What a hopeful post. It was actually my acupuncturist who initially suggested Lyme to me last Spring. None of the ducks had been able to put it all together, but she did. I will always be grateful to her for that.
She also has me on Chinese herbs. I do think they're helping, but this has been a bad weekend. I have no idea if I'm herxing or what. This is the worst patch I've had since I started abx in June.
I'm very interested in the essential oils. My LLMD suggested lemon oil as a detox tool. I've been using that. I would love to know anything else you recommend, as well.
The success stories here are so wonderful, and I'm glad you came back on here and posted yours this weekend.
It's great that you have your life back again!
Andie
Posted by Dalphia (Member # 8305) on :
Farah, What a wonderful story to report to those of us battling the disease and infections. You certainly have inspired me and I'm sure your post has given many hope in the depth of dispair.
Would it be possible for you to post your protocol so those of us who are interested can at least have knowledge of what and how to implement this type treatment.
Hope you continue to do well and maintain excellent health. Gaye
Posted by elle (Member # 7721) on :
Recently to my surprise I tried using an essiential oil at the urging of my reflexologist and instead of irritating as it had in the past, I found it almost pleasant and not irritating.
I find your post to be very timely and I'm very interested in what you are using/ have used.
My immune system is tanked. It was before I got bit . . . but this certainly has not helped.
Posted by farah (Member # 8496) on :
Hi Everybody,
It is nice having the warm response back at Lymenet.
This board was frequently my main source of sanity when I was ill.
I am working on fully putting together a protocol combining Chinese herbs and aromatherapy.
I made the protocol up as I went along, but I stuck to a pretty specific group of oils through the whole process.
I think that a lot of people feel a strong reaction to the essential oils initially because of a detox reaction.
It feels like a chemical sensitivity and it feels like you are sicker, but it is actually a herx reaction. You feel better soon after.
That has been my observation.
I think taking them diluted in small amounts (1-3 drops diluted in vegetable oil) internally can reduce the aversion to the smell, perhaps in capsules. You would have to put them in a capsule and take it quickly before the capsule softens too much. It is better to take it with food.
I think sometimes people stop the most effective treatments for Lyme because they are the ones that make you herx the hardest and that can feel scary. I had some hard herxes as I worked to recover, but the herxes did steadily get milder as I got better.
I have found that the Chinese herbs that work best for Lyme disease are the ones that strongly promote blood circulation combined with antibacterial and anti-phlegm herbs. I think the anti-phlegm herbs can help with the cyst form of the illness.
The ones that promote blood circulation help the tissue penetration of other therapies, and they help with improving oxygenation so your body is better able to keep the Lyme under control.
For the autonomic and nervous system- I got this form of bodywork done called Core, which is a type of cranialsacral therapy. It really helped my neuro and cognitive Lyme disease symptoms in combination with the aromatherapy and antibiotics.
I was fairly consistent with the specific therapies I used. As I got better, I would throw in something new now and then because I felt safer trying something that might not work because I wouldn't deteriorate as badly, and I had the stuff I usually used as a backup. I tried digestive enzymes, and they seemed to be helpful, too, but I wasn't as consistent about using them.
One of the biggest thing I did to assist my recovery was to avoid stressful people and situations. A lot of family members were very abusive to me while I was sick because, of course, they thought I was crazy, not sick. That I was a lazy loser, not disabled. I looked okay, why didn't I just get a job already.....etcetera, etcetera. I would internalize a lot of self-loathing and the stress would send me into downward spirals both physically and mentally. I had no filter to block out their behavior when I was ill.
When I totally shut these people out of my life while I tried to recover and help myself, all of the other things I did to physically recover worked a heck of a lot better. I think this was a major factor in my recovery.
And slowly much more loving and accepting people entered my life, and that accelerated my recovery.
Between consistently taking and doing all of the different therapies I did, and being in a better environment around better people, every month I could look back and see how I was better than the month before.
Day by day, week by week, month by month, and year by year, I have gotten to a very solid and good place. It was not easy but it is very possible if you work hard over time, and if you are willing to deal with some unpleasant herxes
Farah
Posted by Lymied (Member # 6704) on :
Farah,
Thanks for mentioning the CORE therapy.
I just graduated from massage therapy school and will be sitting for my certification test in the coming weeks.
It is interesting because I had made up my mind two years ago to go into massage therapy because ultimately I was being called to be a craniosacral therapist. I had migraines and I wanted to help others get better. I had to get certified in massage therapy before I could pursue a career in craniosacral.
So, I pick out a school in anticipation of a move to NC from MA. We finally move - this has now been a two year dream in the making to attend massage therapy school.
With in two months of moving I get so sick. Six months without a diagnosis, had to put off going to school. Got my diagnosis, finally was able to get enough treatment that I could read and retain information again...and off to school I go.
Well with treatment my migraines have improved - I only get them when I herx...interesting, huh?!? May have been lyme and tbi related the entire time...
Anyway, I still want to pursue craniosacral work. As well I want to help out with research in massage therapy. I also want to help lyme patients.
I received at least one massage a week in class while learning for eight months. I swear it has given me a fast track to healing.
Anyway, I will check out this CORE work. Do you know who specifically teaches or developed this type of craniosacral therapy?
Thanks for any info. you can share!
Posted by Foggy (Member # 1584) on :
Welcome back Farah! Glad to hear you're doing so well. Your protocol sond very interesting. Don't be a stranger. Posted by farah (Member # 8496) on :
I learned to do the technique on myself after a number of sessions, and it helped my cognitive, neurological, and pain symptoms a lot. I had migraines, and the aromatherapy in combination with the core synchronism really helped. I think that the core synchronism was the most effective form of bodywork I received. Deep tissue work also helped.
I think an instructor at the New Mexico School of Natural Therapeutics developed the technique. It doesn't feel like much when it is being done, but you feel a LOT better after. There were times when it almost felt like there were parts of my brain that were turned off or misfiring, and the core synchronism would always get rid of that feeling, and I would feel like my brain had room to breathe again, and I could think clearly.
The French in particular, have done a lot of research on the antibacterial and antiviral effect of different essential oils. There are doctors in France that perform "aromatograms" where they will take a culture of whatever pathogen a person is infected with, grow it in a petrie dish, and test different oils on the bacteria. Whichever oil is most effective in killing off the pathogen is used in small amounts internally as an antibiotic for the person.
I have a book that is all about it, but it is in French. A lot of essential oils are broad spectrum in their antibiotic, antiviral, and antifungal effects, and they improve oxygenation of the body, and they help chelate toxins out of the body. Since they are multifaceted and broad spectrum, they really attack Lyme disease on many fronts.
I think it is important for people with Lyme who get better to come back and support those who are still feeling the worst of the disease. It is important that people maintain hope in the possibility of getting better, because it is easy to doubt that possibility during many of the darkest moments of this illness.
Farah
Posted by Lymied (Member # 6704) on :
Farah,
Thanks so much for the link! I am going to check it out.
I am so glad to hear that you are well and thanks again for taking the time to come back and tell us.
It is definitely necessary for me to hear that others have made it to the other end of the tunnel and reclaimed their life and health.
![[Wink]](wink.gif)
May have been lyme and tbi related the entire time...