Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hi <<<<< LymeNet Family >>>>>,
It's Silverwolfi of many questions again.
I've been trying extra Methyl- B-12, and heat, ice makes me get chilled right now.
The headache and Myo' bit keeps coming and going. I've been trying to mostly rest, tho' I have done a bit of laundry.
Monday, the Neuro' Doc had m do the walk on tippy toes, then on heals bit, Tuesday I felt like ankle is sprained, and Plantar fascitis acting up, and very tired.
Yesterday the ornery headache kicked in, and this a.m the Myclonic jerking caught up to me. It wasn't as bad as some times, but I am trying to find a gentle way to deal with myself.
There are a few things TxCoord and I have to get done, so I'm trying not to overdo. We have some of TxC's family coming,to area. It's good that they can come, but still a stress for me [I think maybe for him too].
We'll meet them elsewhere, as our place isn't set up for company. They know of our health issues somewhat,and have a few challenges of their own.
Then Monday is my Oral Surgery Appt. and company leaves early Tuesday. Other things happening, and I have a blood test coming up March 1st.
I am trying to figure out what else I might do, I also use Andrographis, the weather is changeable right now,and that often helps ease headaches.
As usual finances are fairly tight, so If anyone has an idea, that may help,it'd be good to know.
A heated rice buddy, resting when I'm able, and using what supplements I have here,is my main option right now.
I am glad, that the Myoclonus,isn't flaring too harshly right now. It is painful, but when it is less jerking, it helps a little.
Lets see Lady silverwolf that I am, wearing my better bra, hoping the support, may ease the neck and shoulder area... and trying not to do to much,as my feet are tender,especially the left.
I use a Turmeric/Resveratrol blend product also.Any other inexpensive ideas? I know I've read some stuff recently, but my brain is being befogged again.
Jus' Silverwolfi
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Just me, slapping forehead ,only figuratively tho'.
I read some stuff on Jordanas post 'Options for Shaking and Weakness',just yesterday I think.
Sometimes this Lady Silverwolf is spacey fog brained...
If anyone does think of something else simple, low cost or free, please add your ideas.
Boy,I cannot spell, lately 'iceas appricated'.
Okay Jus' Silverwolfi ringin' ears here
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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posted
Silver .. I know nothing about myoclonus, so I can't help you there. There should be info in the archives..not sure...
But the ear ringing may be from the salicylates in your foods or from the turmeric/reservratol itself. Maybe when you buy again, try to find Curcumin.. it is derived from turmeric but is much lower in sals.
I use the NOW brand from Swanson's Vitamins online. Cheapest I've found that works.
Do you have migraines or do you know which kind of headaches you are having? That makes a difference when it comes to treatments.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hi <<<<< Lymetoo >>>>>,
I am still learning about the Myoclonus Jerking-seizure issues. I need to look up proper spelling.
There is evidently more than one type, it is my understanding, that Mandy from 'Under our Skin' was having them. I know tht mine look similar to hers. I cried the first time I saw the example in the Film.
There was nothing in testing so far to explain if my problem is from a form of epilepsy. The Neuro' said that there are some muscle problems that can cause it as well.
Since Medicaid will not approve me for the 24 hour, EEG test, we don't have much option right now. That is why the Neuro' wants a' Neuro' blood test' work up.
I'm not sure they'll find anything, SED rate, ANA, Thyroid and so on. The Thyroid is usualy on the low side of normal for me[ I'm suspicious, but IDSA type Drs. will ignore it].
I get Migraine headaches, light sensitivity, spots and bright flares in front of my eyes, some nausea [not to awful on the nausea usually]. Some years ago, the seizure like jerking started, well, actually it is slowly increasing.
I maybe should say since around 1990, when I had the first couple, they called it Migraine variant, w/' migranic seizure' initially.
About 10 years ago, it became a little more frequent,and we tho't it was 'herx' reaction to some of the treatments. The last three years the seizure like jerks have gotten really bad.
And now they are very painful, muscle spasm like pain, it starts in my head/neck, and then shoulders and arms. If I cannot get it to stop it goes into my legs.
When they are finally over [and trying to slow them down and hold still makes it worse...] I feel exhausted,and my muscles cramp and knot.
Slowly my hearing has worsened, and the tinnitus and Musical Ear syndrome has worsened. So We'll need to check into the Curcumin rather than just Turmeric, we had found it w/ the Resveratrol[Japanese knotweed type],and were trying to save money.
I have had to guess at what is happening w/ the seizure type problem, My cousin an RN since the mid 70's, has a son w/ seizures. Talking to her,and the Docotrs, they seem to feel it is this Myoclonus problem.
I feel it is Lyme and Co's related, but w/o a CDC positive test, they will look everywhere but the Lyme and Co's. So right now this is what is up.
I am praying I don't have a seizure like issue during the Oral surgeons check-up[or probable teeth extractions]or the next blood test, March 1st.
Will be checking in again later, TxC' got dinner going and ready for us.
Thanks for the reply...I appreciate it!
Jus' Silverwolfi
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
Gou teng is unicaria rhynchophylla.=chinese cats claw ..may help...sympathys and hugs ...my heart goes out to you Definitely sounds like bugs are in the nerves cns and or mylein sheath is compromised. Thinking codliver ,monolaurin and lions mane.Dont get lumbar puncture.
hearing good things about frequency medicine ?and also found nice ol couple that will ship bees for .10 ea.. can you get epi pen ,are you on statins?
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
sometimes at night I jerk so hardit feels like a massive cramp. it will wake me up. its usually a whole body kind of jerk.
nothing seems to help.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hello <<<<< bluelyme, and randibear >>>>>,
I take regular Cat's Claw Daily, will have to research the Chinese one. I do use a good coconut oil too. And i'm pretty sure the 'signs of aging' the Nuero' doc saw,im myMRI,are the same lesions that I saw on CT scan films 10 years ago, some are demyleniating.
I am highly allergic to statins, and had a very bad experience with them back in 2010,and before. So I will not take them. Also one Lumbar puncture [spinal tap and mylogram ]was one to many, I had it done in 1974. I would refuse a Lumbar puncture.
TxC' and I are researching info' and wondering about Lion's mane,too.
Hi Randi', what research we've found on the Myclonus,says that acrually really hard jerking when we fall asleep can be a form of Myclonus.
Mine usually happen while I am awake,and last anywhere from a few minutes,to one being almost an hour, and painful. I am sorry that the sleep jerks are happening to you, not fun,when it hurts.
I've woken up in pain,and have wondered if I am having jerking seizures in my sleep a few times.
I better close for now thanks for info'and replies!
Jus' Silverwolfi
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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