A dear friend and long time lyme&co sufferer just told me,
"Increasing symptoms post 2 wks after surgery. Thought the 2 doses of IV antibiotics in hosp might have caused a major herx, but I believe this is disease re-activation.
My neuro system is so overactive. Having neuropathis pain throughout my body, severe searing, burning pain in my left eye, cheek, nose, lip and teeth, tics (involunatary muscle moves), upper and lower extremity muscle twitching, and last night, I had some bizarre heart rhythms- lasting for 5 min, but scary.
Felt so bad I thought I might die."
This is no whimpy lady. This is a strong woman, used to suffering, so when she says this, it scares me.
What would your "been there" advice to her be?
Posted by Shahbah (Member # 28735) on :
How long has she been sick? has she ever experienced those symptoms? How long has she been treating Lyme?
Posted by lululymemom (Member # 26405) on :
I hope she's not on flagyl or tinidazole, because those can increase neuropathy and must be discontinued.
Posted by Tammy N. (Member # 26835) on :
I had a surge of these symptoms after my dental work. Believe it was related to mercury. I was very high in mercury to begin with, so stirring the pot didn't take much to send me over the edge. She could be dealing with heavy metals. Very real possibility since she has Lyme and cos.
Also, I have dehydration issues, so I think that contributed to the misery. (Now I believe this is part of 'mild illness' issue... which causes these symptoms also....)
Not sure if one or both of these issues are a part of your friend's, but I wouldn't be surprised. I feel for her, this is the worst of it.
Oh, and Niacin, Holy Cow the flush for someone in my situation is too much to bear. Check and see if that's part of what she was given.
Just some thoughts....
Best always, Tammy
Posted by karenl (Member # 17753) on :
Did you discuss parasites with her?
Posted by chiquita incognita (Member # 30381) on :
This is not a diagnosis, only speculation based on personal experience. This speculation below should be considered questions to take to her doctor.
Since this happened after the surgery, could this be chemical sensitivity? Response to the trauma and the anesthesia?
In my own experience, I had neuro symptoms with chemical exposure, one of the tell-tale signs of chemical sensitivity.
For me, the following were helpful:
Liver toxicity, kidney cleansing, etc. Glutathione. Milk thistle (Paradise Herbs powdered extract has no alchohol/glycerin, is completely non-allergenic, and also is concentrated an amazing 72x!!) Check with the doctors to rule out drug-herb-supplement interactions.
See this too, I wonder if the blood-brain barrier could possibly be involved? Leaky Gut Syndrome? See here and follow the links, the article by the doctor is extremely sharp and could offer multiple leads:
My very best wishes with this, and hope she recovers soon! Beyond the darkest hour is the biggest ray of hope, and sometimes it is just around the corner! I have learned that no matter how big and looming things may look, no matter how dark they may seem, something simple can sometimes be at the root and all it takes is the right tool to take care of it, under the right professional care.
Sincerely, CI ps I think ND's would be able to help a lot in this situation if it is a toxicity matter www.naturopathic.org or chiropractic neurology www.acnb.org
[ 04-11-2011, 04:51 PM: Message edited by: chiquita incognita ]
Posted by merrygirl (Member # 12041) on :
Hopefully she was not given stetoids for her surgery. Does she have a llmd she can call?
Posted by chiquita incognita (Member # 30381) on :
PS this will not "Cure" the underlying issue but to provide some relief:
Try Hauschka (brand name) Talma MOore Lavender Oil as topical massage (very high quality, I do not work for them)
St Johnswort oil is high in flavonoids which are nerve anti-inflammatories (not the same as the tincture), use topically
Mix SJW oil with homeopathic Traumeel Oil and this could be helpful, use topically
Homeopathic Hypericum Perforatum for nerve injuries, internally
Coconut oil, topically
Everybody responds to different things, so it's a matter of trial and error to see what she responds to best. Coconut oil can really help a lot, in my experience, but so can SJW oil. Again it depends on individual responses.
I am so sorry she is going through so much and may she be well and full of hope soon. May her recovery lead to hope-filled stories for others, as testimony to conquering fear with real hope that pierces the darkest night with the tiniest spark of light. May that spark light up the whole room and bring real relief to body and psyche alike.
We are all thinking of you, and praying for her rapid healing!
Sincerely, CI
The above information has not been evaluated by the FDA and is not intended to diagnose, cure or prevent any disease.
Posted by 17hens (Member # 23747) on :
Hold on, I'll ask her and get back...
Posted by chiquita incognita (Member # 30381) on :
Hi 17 Hens For heart rhythms, the following helped me a lot in the past when I was neurotoxic:
MOre and more I am wondering if this could be a toxicity issue and it is affecting her heart and nervous system. I am not a doctor so I am asking it as a question, not making a statement. I could be wrong, I am only talking out of my own personal experience. Which does not apply to everyone, of course.
Do the doctors know about all this? They should be told and asked for a diagnosis/treatment plan.
Detox products, lots of water to flush body? Plus items to support the body during symptoms?
AGain this is doctor's material and should be reported to them. The above is only for adjunct support.
BEst wishes, CI ps and make sure all herbs/supplements do not interact and are approved by the docs.
[ 04-11-2011, 04:52 PM: Message edited by: chiquita incognita ]
Posted by chiquita incognita (Member # 30381) on :
OOOH!!!!! Last thought occurred:
Is she diabetic?
This should be checked out by her doctors at the hospital. *If* yes this could contribute a LOT! to the situation??
Best wishes, CI
Posted by psr1 (Member # 22957) on :
I had this so badly a year ago I wanted to die as well. It was finally controlled (initially) by Neurontin and then by very heavy detox - including heavy metals. Over a period of about 3 months it finally became manageable: I have slowly dropped the Neurontin down to nothing, and am still detoxing.
Posted by Tammy N. (Member # 26835) on :
Also, check Diabetes Insipidus.
Posted by 17hens (Member # 23747) on :
You guys are the best, the absolute best! Thank you so much for caring!!!!! (((((( )))))) to you!!
OK, here's what my friend says about her situation,
"Misdiagnosed for 20 years, with history of over 100 tick manifestations at summer cottage. Correctly diagnosed in 2005, when treatment began.
I've had neuropathic pain before, but never facial, and never to this severity.
Having tics (involuntary muscle contractions), nausea, brain pressure, severe upper and lower extremity muscle twitching (again- had many x before, but never to this degree or severity. CNS very involved.
No flagyl or tinidazol. No niacin flush.
Had steriod injection into knee last October to go on cruise. (yes- I know it is a no no) CNS sx. started about 12 days after the injection.
They subsided, and then 3 weeks after a TKR on Feb. 1 of this year, started with all this CNS stuff, even awakening hearing sounds in my brain. (clanging)
Symptoms much worse than in the fall, with all this searing, burning, lightening type pain every where sporadically, but consistenly in the left side of my face."
Posted by 17hens (Member # 23747) on :
CI, your mailbox is full.
Posted by 17hens (Member # 23747) on :
psr1,
Can you tell me about your detox? Anything or everything? What helped the most? Did a doctor take you thru it or did you do it on your own? If a doctor, can you tell me who it was? My friend is looking for a good one. (PM me maybe?)
CI & TN, I don't know about the diabetes. I'll ask her.
Metals, parasites? Both highly likely.
Posted by 17hens (Member # 23747) on :
My friend adds,
"No diabetes, but certainly would explain neuropathies.
Just think it is neurolyme doing its dirty "stuff", particularly with white matter lesions in the brain. Last stage.
Thanks to all of you. We are a special, unique, understanding, sensitive, compassionate FAMILY.
Won't quit until I draw my last breath, and then I'll begin again."
Posted by MDW005 (Member # 22706) on :
Hens, I think chiquita could be right with the chemical issues. When I had surgery and take chemical meds they intensify the pain.
I feel for your friend being a tough ole gal and the pain going beyond the unbearable for high tolerence woman.
This kind of burning is tough. I live with it most days in the face and head...well the whole body but you know what I am saying.
Relief? scratching my head. The only thing so far that I have found to relieve a little is detox bath. three times a week. Daisy's and hubs recipe is in Hansa center post.
Posted by LymeGoAway (Member # 25041) on :
Another thought--could she be low on magnesium?
We Lymies tend to be low in that department, and magnesium can be further depleted by stress--including the stress of surgery.
Low magnesium would certainly explain the twitching and heart arrhythmia.
Posted by willbeatthis (Member # 31111) on :
Hens: For my neuropathy- they give me B12 shots (every other day) which I do think really help. I am no where near the level of expertise like the others here... but please let your friend know that many are praying for her...
Posted by 17hens (Member # 23747) on :
MDW, you get relief from scratching your head? Wow, that's amazing!
I'm sorry you all have to go thru this. Really, my heart breaks for those in such pain.
I'll talk chemical issues with her. Yes, it really does sound like detox is key here.
Speaking of detox, you guys wouldn't believe the turn around I'm seeing in my daughter with these castor oil liver packs, mini flushes, and bile duct flushes. Talk about amazing!
She went from 50% or less functioning (brain fog & fatigue) to 90% in 2.5 months!
And she's not doing any treatment (abx or herbs) since Christmas, so it's not killing ketes that's making her feel better, it's purely detox.
Maybe I should be discussing this with my friend too.
Thanks for all your help/input and especially prayers, everyone. My friend so appreciates it (and I do too)!
Posted by 17hens (Member # 23747) on :
My dear friend says,
"I had severe metallosis when my first hip replacements failed and the metal literally "ate" my bones away; artificial bone had to be placed in the cavities left by the bone erosion.
No wonder my test is demonstrating heavy metals. Four hip replacments and two knee replacements.
You're a great group of people. I think I want to join lyme net. You have been so helpful.
I really don't do much detox, and I believe you are all absolutely correct- detox is the key.
Love, prayers, and thanks to all. WE ARE FAMILY, growing , exploring, sharing, caring and learning together!!!!"
Posted by Carol in PA (Member # 5338) on :
Magnesium should help the muscle twitching and the heart arrhythmia.
It will also reduce inflammation and help the liver detox.
Posted by momlyme (Member # 27775) on :
17hens - I just read the thread and it sounds very similar to when my son was put on prednisone... he started having neurological involvement: twitches, facial tics, shoulder shrugs, full arm movement and falling down because of leg twitches.
It was severe and unrelenting from August until whenever I found the powdered Cal-Mag supplement he takes now. I tried a few different magnesium supplements and transdermal magnesium before I went with the powder and saw his neuro symptoms disappear.
Magnesium and calcium work together. They are best taken in a 2:1 ration, at the same time with an acid (like lemon water, ascorbic acid, vitamin c)
It's also important not to take calcium with other supplements or food. Calcium blocks the absorption of many nutrients.
I buy my powder Cal-Mag pre-mixed and make a hot apple drink 1-2 times a day. Summer is coming... might have to switch to a cool lemonade.
Metanx helped me more than daily methyl b12 shots.
Posted by Razzle (Member # 30398) on :
Anasthetics use up Vitamin B12, so if she was already low or low-normal, then the surgery may have pushed it over the edge.
Vitamin B12 and antihistamines have been the most helpful for my neuro issues. Also magnesium helps with muscle issues for me...not so much nerve stuff.
And the homeopathic hypericum can be very, very helpful as well. I get mine from a local health food store, but sometimes I have needed a stronger potency so I get the stronger potency version from http://www.abchomeopathy.com (no financial connections with this website/company).
Posted by IrTabby2 (Member # 31079) on :
I literally just went through this, and still am except Im not in such bad pain as I had been, thanks to my pain management doc.
Im still trying to figure it out, but the 3 biggest things could be.
1. I had a huge herx from upping my minocycline. 2. I am overloaded with toxins and need to detox badly. 3. My chemicals and vitamin levels are out of control.
I would suggest to your friend to hang in there, see a pain management doc, and then when the pain is under control, see her llmd, try to detox like crazy and see an endocrynologist to test all her levels.
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