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Autoimmune "lupus like" cranial neuritis


#1

I cannot feel my entire mouth throat or neck and burn on fire non stop causing paralysis! Please help me! Here is my story!!

I have an autoimmune disease set off by Keflex 29 years ago and biaxin for a tooth infection in February 2015 that threw me under the bus!

My body is attacking my trigememinal and glossopharngeal nerves (cranial nerves) vagus too, neck into my spine in neck down back! My entire mouth throat palate tongue sinuses cheeks occipital (I can feel the swelling of all the nerves in brain and brainstem! I have atrophy in my face from the nerves inside my mouth and swelling near my ears and atrophy with my ears as well! Please help me stop the autoantibodies from attacking my central nervous system (cranial nerves and spine)!
Looking for natural treatment only! Big Pharma ruined my life!!

I need a miracle now please!!


#2

You should consult with an acupuncturist locally in your area. In very general terms, the vast majority of autoimmune conditions respond well to acupuncture - including lupus, lyme’s, MS, rheumatoid, etc. Additionally, most conditions of those nerves, trigeminal neuralgia, bell’s palsy, etc. do very well. You should find a licensed acupuncturist in your area (use google and/or friends/family locally) and give them 3 months at least.


#3

What about autoimmune demyelinating inflammatory conditions!! I have cranial neuritis of the three largest of cranial nerves I mentioned! It’s not trigeminal neuralgia. You don’t go paralysed in your entire mouth throat and neck chest and stomach (vagus), from a neuralgia. That pain that comes and goes and does not cause parslysis!

Can my condition be helped. I’ve done acupuncture before and it never worked.
I’m now going to go 5 days a week!
My condition is dangerous and severe.

Can I be helped it I do 5 days a week as opposed to 1-2 days a week?

Are you in NJ?


#4

As much as I have compassion for you and the symptoms you are experiencing, please refrain from using exclamation points and alarmed speech. Part of your own healing will be to try to distance yourself from the severity of what you are experiencing so you can experience with as calm and rational mind as possible what is happening - don’t underestimate the value of that to whatever degree you can accomplish it. Further there is no need to re explain your situation over and over - I understand it…

Keep in mind that you are asking for help from a public community of practitioners - for free. Please realize the difficulty of giving complete advice without the benefits of being able to physically inspect you. To help, try to answer exact questions without unnecessary fanfare. Also realize that Chinese Medicine is not a bag of magic tricks - you apparently have gotten nowhere with everything else you have tried, these are not easy conditions to help.

If you can and want, however, to have a discussion of facts that will leave you with pointers of want to do to try to help your situation, we can do that. So to start (which ideally would have been the first thing you mentioned in your initial post) - let’s talk about the acupuncture you say you have had:

  1. How often did you go and how many total treatments have you had?

  2. Were these treatments from the same or multiple practitioners?

  3. Did they use any other techniques other than acupuncture? - cupping? moxibustion? herbal medicine? If so, what, how often and what was your response?

  4. Was the practitioner you saw a fully licensed acupuncturist (not an MD, PT or DC, doing “acupuncture”)? And what did they say when you discussed your poor results with them (which I hope you did)?

  5. In very general terms (assuming you don’t know the points) - what parts of the body did the acupuncturist needle?

  6. And did you really have a “never worked” response from the acupuncture treatments? - or just a limited one. Generally something will improve - if even for a few days following the treatment. So it’s rare when people can honestly say nothing happened - but it is possible with poorly planned treatments…

  7. Have you made any other lifestyle adjustments (diet, activity, etc.) to try to help your condition? If so, what? and what response have you had?

Finally, you don’t need a miracle. You simply need a skilled practitioner to treat you weekly for probably 6 - 18 months - approximately… just to put what your potential acupuncture treatment in perspective. But the answers to the questions above will help me in guiding you further.


#5

I had different acupuncturists over the years from the start of my illness from Keflex. I went 6 times to each over the years with no results.

So my question is…
How many times should I go per week and what pouts are best to get inflammation down from the largest cranial nerves mentioned and spine in neck and back? I never was so sick in my life.

My condition was at a slower pace of inflammation and now all the nerves blew up like balloons. I felt all of it like army soldiers beating me up non stop. Still going on.

I use to walk 21 miles a week 10 months ago and ate vegan organic food and saved animals and have many. Took supplements and felt it and no longer do. Everything must be powder or liquid and I must be so very careful because I also lost my gag reflex.

I’m suffering so much and so scared because o want to live. I have a husband and children and pets that need me and I need them.

Please help me! Any Chinese herbs you recommend that will help that I can drink and won’t get sick from?

Please help me and I thank you so very much!


#6

Please answer each of my questions - again without unnecessary detail. I would like to help you, but can only help you with the answers to those questions. I didn’t ask, for example, if -you- thought they were “skilled” - I asked if they were fully licensed acupuncturists and not practitioners with other licenses doing “acupuncture”. And when you say you “took supplements” - take some time and describe what you took, how much and for how long. “Took supplements” could mean anything. Further, statements like “10 months ago” you “ate vegan organic food” - does that mean you changed your diet 10 months ago, or you changed your diet for a few weeks and you went back to eating whatever you ate before the change. I need to know what you eat now - start by describing a general day of eating. For ease of discussing the acupuncture related quesetions, limit your answers to the last acupuncturist you saw.

Also keep in mind it’s not the frequency that matters - once a week should be fine. More is rarely better. But 6 treatments with serious autoimmune conditions is not going to accomplish much. You need months and months of treatment from a single practitioner who knows your case deeply - which is what my previous response stated. And, there is no way I can recommend herbal formulas to you ethically over the internet for a case like this - find a fully licensed acupuncturist who does acupuncture, Chinese herbal medicine and, ideally, tuina (medical massage) and stick with them for at least 3 months to get proper treatment.


#7

What about autoimmune demyelinating inflammatory conditions!! I have cranial neuritis of the three largest of cranial nerves I mentioned! It’s not trigeminal neuralgia. You don’t go paralysed in your entire mouth throat and neck chest and stomach (vagus), from a neuralgia. That pain that comes and goes and does not cause parslysis!

Can my condition be helped. I’ve done acupuncture before and it never worked.
I’m now going to go 5 days a week!
My condition is dangerous and severe.

Can I be helped it I do 5 days a week as opposed to 1-2 days a week?

Are you in NJ?


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