Folks around here are getting into essential oils... I've rolled on immune therapy for my swollen neck gland, and it seemed to help some... but I have a sore throat and cough that has hung on... I'd been on Claritin for a year and it did help... but I've read of test results that Claritin and Xanax long term resulted in 30% of participants developing dementia. I have been taking Xanax for 30 years for sleeping only...addicted, so would not stop. Stopped Claritin, and have had respiratory problems since. Dr. just put me on Amoxicillin 500 for 10 days... hoping it will cure it. Ultrasound shows many lesions on my spleen... going to see Oncologist in two weeks... requesting not a PA. Anyone have any advice? I've very much appreciated this site... as I don't know anything about CLL, except I'm W&W. I'm a 78-year-old who knows the Lord, so I'm not too concerned about the future... With this world the state it is in, I'm looking forward to the next!
Is anyone on Essential Oils for W&W? - CLL Support
Is anyone on Essential Oils for W&W?
Read the section "Evidence for essential oils" in this article from Science Based Medicine: sciencebasedmedicine.org/es...
I hope you get some helpful answers from your visit with your oncologist.
Neil
Thank you for the advice... will check it out
I’m sorry to hear about your respiratory problems but please don’t rush towards the next world, I’m sure that there are people who would miss you!
Be careful about essential oils if you have pets. Some are toxic to animals. I doubt that they would be what you need for your sore throat and cough. Have you seen a good ENT (ear, nose, and throat specialist)?
I am very allergic to many scents - almost all perfumes and cigarette smoke especially, something that wasn't an issue when I was young - so some of the oils could make things worse if allergies are your issue. The fact that stopping Claritin seemed to have made things worse would point toward that as a possibility. At the same time many find some of the scents to be relaxing.
When l was diagnosed with CLL 3 years ago. I went to an integrative alternative medicine doctor. She suggested Dottera Frankincense essential oil....2 to 3 drops under my tongue per day. Also vitamin C infusions , Metagenics Vitamin D3 With K2, a mushroom supplement called Mycotaki by Metogenics and Teavigo by Pure Encapsulated, a highly purified green tea extract containing 94% EGCG, Curcumin 500 with bioperine by Pure Encapsulated, eating a diet rich in organic vegetables, greens like kale and healthy salads, lower glycemic fruits , salmon and small amounts of organic lean grass fed beef, no processes food, eliminate sugar, exercise and drink ESSIAC tea, which l buy in bulk and brew myself and juicing. I also use immune power EO along and others essential oils, such as lavendar, Theives, Copiaba, oregano etc. So far, by the grace of God, my numbers have stayed low and have not risen. I hope this helps. 
Look up online ,Chris Beat Cancer, very helpful!
Metagenics makes some
Solid products I like the phytomulti, I’ll try the mycotski
Where do you get vitamin C incursions ?
Canuck - Please talk to your doctor before playing around with this stuff!!! If you want an "integrative" approach, find an MD who specializes in integrative or complementary medicine and who will work with your hematologist. No one on this site is qualified to name products or doses that would be the right thing for your particular CLL!
Agreed I don’t think I’d consider vitamin C injections a good multi vitamin and a healthy diet are important plus lots of omega 3 and veggies
Please read more about your final recommendation and consider whether you want to continue supporting this person's misleading business: rationalwiki.org/wiki/Chris... (Do view the 6 minute video)
Not as inspirational, but far more probable reason why Chris beat cancer:
sciencebasedmedicine.org/ch...
You can edit your submissions by selecting the 'v' below them and selecting 'Edit'
Neil
I've been blending essential oils for quite a while, not necessarily as a treatment for the SLL, but for symptom relief. i.e. sore muscles, fatigue, headache, insomnia, sinus congestion, etc.
How often do you get the injections ? How much do they cost ? Thanks
The vitamin C infusions go directly into your veins and take over an hour depending on the grams of vitamin C delivered. It is costs $150 for 20GM of vitamin C, and an additional $14 /10GM
I get 60GM costing $206. I used to try to get the infusions once a week. The doctor recommended twice a week or three times if possible. Financially I could not do that. So I would go twice a month.
That’s costly! Wow , have your blood counts improved ? I’ve heard reishi mushroom
Is good to take as
Well as chaga
I was diagnosed 3 years ago with CLL at the age of 55. The diagnosis came to a complete shock to me. It was found through routine blood work. I am in the W&W phase. I wanted to take a holistic approach to my diagnosis. My white blood cell count and lymphocytes counts have remained the same in the past 3 years. The ingredients in the Mycotaki l take by Metogenics is....
Serving Size2 Tablets
Servings Per Container45
A Proprietary 10:1† Water Extract of:
Reishi (Ganoderma lucidum) Fruiting Body, Shiitake (Lentinus edodes) Fruiting Body, Fu-Ling (Poria cocos) Sclerotium, Turkey Tail Mushroom (Coriolus versicolor) Fruiting Body, Oyster Mushroom (Pleurotus ostreatus) Fruiting Body, Cordyceps (Paecilomyces hepiali ††) Mycelia, Maitake (Grifola frondosa) Fruiting Body1300 mg*
Another member reported doing IV vitamin C 3 times per week for a year at $US250 a session. He reported a tiny boost in energy and no noticeable change in his CLL by him or his doctor: healthunlocked.com/cllsuppo...
DianeM20 , have you or your doctor noticed any change in your blood counts, node sizes, etc that you believe is due to your infusions? (I've deleted your reply above because you have shared where you live in an open post and also promoted an unproven alternative treatment, which contravenes our community guideline item 29: healthunlocked.com/cllsuppo... .)
Neil
Thank you ☺👍 I'm in the W&W phase and do not have and node issues. The only thing I can say is, in the past 3 years following the protocol of the integrative Services doctor I go to, my white blood cell count and lymphocytes have stayed the same. No increase as of yet.
Diane - What you don't know is whether your counts would have stayed stable without the supplements. Mine were stable for 10 years. After testing my levels my doctor added Vitamin B12 and Vitamin D3. He monitors my levels about every 6 months, and occasionally makes adjustments in my doses as appropriate.
Excellent ...l will ask my Dr about vitamen B12. Thank you! 😊
Good to hear you've remained stable for 3 years. I note that you shared 8 months ago that you take green tea and curcumin. I do too. I presume that you been taking these for 3 years too based on advice from your integrative doctor? EGCG in green tea was shown to reduce the CLL burden in the majority of patients in a phase 2 Mayo Clinic trial of early stage patients. Curcumin has been shown to cause apoptosis in vitro, so how do know whether you are gaining a benefit from the IV vitamin C or these supplements? Do you take the green tea and curcumin alternate days as this was shown to work better in in vitro studies? Was your lymphocyte count climbing before you started 3 years ago? Do you happen to know your staging, FISH or IgHV hypermutation status?
Sorry for all the questions, but I'm sure many members would be interested in how relevant your experience is to them.
Neil
I do take the curcumin and green tea extract as advised by my Dr. I do not take them alternatively as the studies shows, as you stated. Maybe l should be. Correct l do not know which supplement or if the infusions are helping. My lymphocytes were very slowly creeping up, nothing significant. In one month l saw an oncologist. I felt W&W was not being proactive. So within 4 mos of my diagnoses, I went to a holistic Dr. I'm at stage one. My oncologist monitors my blood work . I had the FISH test to confirm my CLL , he does monitor my lgHV and tells me all is good with that.
Maybe my approach has been throw "the kitchen sink" at it. Not sure if that is good or bad.... or if any of it has had a positive impact or not. It's just what l have done for 3 years. 😊
Is your oncologist a hematologist, preferably with a special interest in CLL? A Flow Cytometry test is the one normally used to confirm a CLL diagnosis, and IgHV (mutational status) is normally only done once, if done. It doesn't change, though a few people have been retested when they changed cancer centers and have gotten different results, most probably due to lab error.
Yes, my Dr is an oncologist a hematologist and was specifically recommended to me by my Primary Dr. because he specializes in CLL. He did change facilities and that may have been why lgHV was retested.
I guess each case is different , vitamin C infusions May help in early stages, but probably less effective after a certain point .
If you take the time to read this post: healthunlocked.com/cllsuppo...
you'll begin to appreciate that IV vitamin C is unlikely to provide any benefit to those with CLL, other than perhaps the "rare cases of this disease (which) showed TET2 mutations", which fits in with what has been reported by those trying it.
Neil
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