Jordana
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posted
I'm really starting to wonder if what I have going on is more than just Lyme symptoms.
I am really losing strength. My neck aches all the time and feels a lot weaker. I have these sensations of vibrating that aren't the same as the typical Lyme vibration -- it's more like sometimes when I move my legs I can feel them vibrating as if the nerves aren't connecting all the way or something,to the muscle.
Just sitting up can be really tiring. My neck is really weak. My back shakes and I'll find myself leaning really far forward on my elbows and when I straighten all the way up in a sitting position I'm trembling.
I went to see a couple neurologists last summer;I even went to see an MS specialist who specifically said no MS and no CIDP.
Does what I'm describing sound "normal" to a Lyme person or does it sound more serious? I'm finding myself just laying flat on my back way way more often than a year ago.
Posts: 2057 | From Florida | Registered: Feb 2015
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Rumigirl
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posted
Groan, no this does NOT sound good! Yes, it can be from Lyme, of course, but that isn't a sufficent answer.
I'll PM you tomorrow about someone to see to check out CDIP and for treatment with IVIG (along with your TBD treatment).
Is your TBD treatment the best that it can be? Are you on IV? It sounds like you need to go for the best treatment you can get, which surely means travel and expense. But you need to do everything you can.
It's not easy, I know.
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bluelyme
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posted
The llmd i first went gave me dx of peripheral demylinating neuropathy. ..it just decribes what is going on like ms is immune system attacking mylein sheith ,hashimotos is immune sys4em attacking thyroid,
if the buggers are eating our nerves and they are ,then kill and repair is all we can hope for...i started large amounts of flax coconut oils and chinese cats claw and lions mane. Plus royal jelly lots
It calmed the shakes with lots of magnesium. Lou's neuro who im not sure is still here said once you see atrophy the nerves are half dead.and will take a long while to regrow if they can...its like building a house while its still on fire..
At the lyme clinic i had them test out port with iv curcumin...it calmed inflammation down but lady recommended iv phosphatidylcholine for nerves...
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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Jordana
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posted
Thanks Rumigirl.
I'm not on IV;I am on minocycline oral, lol.
I don't think my treatment is the best that it can be at all but I'm so confused about what to do next. I've had two appointments with the "LLMD" who never answers my emails.
I was looking at Dr J's website ( DC) the past few days but the thought of having to navigate all that is just beyond my comprehension.
I keep telling myself this is all because of a lack of conditioning from barely moving for a year but...I dunno...
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Jordana
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posted
That's been my line of thinking too Blue. This is why I keep worrying about whether my treatment is enough.
ALA, benfotiamine, coconut oil, saturated fat, etc.
I tried Lion's Mane but it made my nerves jangle inside my arms. I still don't have a good explanation about why it does that.
From the neurologists, I have been diagnosed with Nothing.
Posts: 2057 | From Florida | Registered: Feb 2015
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Jordana
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posted
I can still do a Down Dog, a Plank, lift my arms over my head, do one very shaky pushup, stand on tiptoe, get up and down my stairs and drive a car, not that I ever do. I don't see any signs of atrophy but everything is just bubbling and twitching under the surface. And my core strength lasts like ten minutes tops. Without shaking, not at all.
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Jordana
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posted
I don't think I have it. I'm missing most of the signs. No stretchy skin, etc.
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Rumigirl
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posted
[Sorry, I kept working on this, and the computer kept going wonky, so I apologize for errors, etc. It keeps jumping around and mangling words; don't know what I"m hitting that's making it happen. 'm at the end of what I can do tonight!].
When I wrote the above comments, I didn't realize that you were just starting out with treatment. And I don't know the details of your treatment, etc. But the first thing is to get the best TBD treatment that you can.
You may well need to look into IVIG treatment later, and I could PM with you on that.
But your symptoms aren't good, so as quickly as you can comfortably ramp up to a good, comprehensive treatment for the infections you may have the better. Knowing though that what your body can handle is always an issue.
You definitely should check with people here on LN and also more local to where you live about the best LLMD's to see, and whether your doctor and you treatment are the best they can be.
Join your local support group (state/area) online and/or in-person to get more help with doctors, etc. There is a link on the left here on LN to the support groups.
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Jordana
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posted
Thanks Rumigirl. I've been working on getting up to a killing dose with pulsed flagyl and a consistent herbal regimen.
I also just made an appointment with a non LD neuro for a check to see how I'm doing. I think I might need IVIG too eventually. She saw me last year and should at least be able to tell if I'm deteriorating.
Posts: 2057 | From Florida | Registered: Feb 2015
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quote:Originally posted by Jordana: I'm really starting to wonder if what I have going on is more than just Lyme symptoms.
I am really losing strength. My neck aches all the time and feels a lot weaker. I have these sensations of vibrating that aren't the same as the typical Lyme vibration -- it's more like sometimes when I move my legs I can feel them vibrating as if the nerves aren't connecting all the way or something,to the muscle.
Just sitting up can be really tiring. My neck is really weak. My back shakes and I'll find myself leaning really far forward on my elbows and when I straighten all the way up in a sitting position I'm trembling.
I went to see a couple neurologists last summer;I even went to see an MS specialist who specifically said no MS and no CIDP.
Does what I'm describing sound "normal" to a Lyme person or does it sound more serious? I'm finding myself just laying flat on my back way way more often than a year ago.
Have you had any immunizations in the past month or so? In early December I got a Pneuomav shot and 2 weeks later I ended up in the ER with similar symptoms that I am fairly sure was Brachial Plexus Neuritis(parsonage-turner-syndrome).
It cost me two weeks of work and it took 2 months for my shoulder to straighten out.
Never did have a electromyogram test to confirm but all the symptoms fit to a tee.
Still have random numbness in various areas from time to time.
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Jordana
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posted
No, no vaccinations. This all seems to change day to day. Yesterday I seemed to have some strength in my neck; today my hands are stiff.
My back and trunk just aren't very strong. I end up spending a lot of time on the computer on my belly propped up on my arms -- so much that the elbows of my shirts are wearing out.
I also don't have the symptoms I described continuously. I can go a whole day with nothing new happening - just generalized weakness and vibrating, and then get hit worse.
I think my whole nervous system is infected and the spirochetes just decide what they're going to pick on on any given day.
I really really hope it's just Lyme and it goes away with treatment.
Posts: 2057 | From Florida | Registered: Feb 2015
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Rumigirl
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posted
I"m not a doctor, of course, but it sounds to me like you could really use IV treatment. Maybe it is wisest to start out with orals, since you are just starting out. Actually, now I"m not sure, did you
just start treatment, or did you start last year? In any case, it sounds like time is of the essence for you. You, like most of us, probably need plenty of detox to keep up with the die-off, etc.
Seeing the neuro is a good idea to assess, even though they aren't LL. You just don't want to go too far down the path of weakness, etc.
This may not be the cause at all, but you should read Dr. B's exercise instructions in his Lyme treatment guidelines in a sticky at the top of Medical. Even though it may feel impossible, it is
really important to start from where you are and do whatever strengthening and stretching you are capable of and slowly build. Maybe working with a PT who understands chronic illness
like this. It feels impossible at first, but it is essential; he's right about that. Slow and steady wins the "race" on this one, no extremes, of course.
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Jordana
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posted
I started Lyme treatment officially at the end of January. The LLMD started me with 50mgs of minocycline daily plus 250mgs of tinidazole twice a week.
I really didn't think it was enough so I've been working up -- now I'm at 150mgs a day. I still don't think it's enough but the LLMD says I'll herx worse if I'm on an IV.
Also taking a whole cocktail of buhner herbs 3x a day.
Still not sure it's enough. But if I get up to 200 mino that's a killing dose and it might accomplish something. I also keep thinking that if I end up on IV this will have at least knocked some of this down.
My only problem with IV is that I'm allergic to penicillin and Keflex, so IV rocephin is out. I read that I can do IV doxy or vanco and some others I don't remember but those aren't PICC lines, those are central lines.
I agree time is of the essence though.
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Phoiph
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posted
Jordana...
How long do you think you've had Lyme?
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Jordana
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posted
Hi Phoiph
I got a bite I was told was a spiderbite on August 2, 2012. Never treated. I felt completely fine really.
I started getting hot flashes about six months later that I thought were from perimenopause.
November 2014; parotitis, then meningitis. January 2015 the vibrating started.
So about 3.5 years.
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Phoiph
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posted
What kind of condition do you feel your gut is in?
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Jordana
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posted
Pretty bad.But better than it used to be. My stomach took a dive along with everything else so I stopped gluten, eventually got gallbladder surgery and was diagnosed with bile acid reflux and put on cholestyramine. Had an endo and colonoscopy, polyps removed; they found gastritis.
My stomach doesn't bother me the way it did but it's pretty beat up.
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Phoiph
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posted
Do you know what your cholesterol levels are?
Cholesterol is neuro-protective.
Cholestyramine binds cholesterol, and can absorb good fats, deplete fat soluble vitamins A,D,E,K & other nutrients, all of which can lead to neurological and autoimmune issues...
Cholesterol is also necessary for hormone/neurotransmitter production, and your brain and nervous system require good fats to function properly and repair.
Just wondering if your increasing CIDP symptoms are related to this drug...
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Jordana
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Thanks for the thought but I don't think so. I've had shaking and muscle/nerve issues for a year. It literally just started one day and never got better, especially at the neck and shoulders.
I started the Colestyramine because of the bile reflux but also to bind toxins. My cholesterol was not low to begin with but I agree completely it's essential and that was one of the things that made me hesitate to go on it.
Even if I replaced it with the binder I've got bile reflux, which is what they thought was causing the gastritis so I'm stuck with it for now.
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