posted
Thank you, everyone, for the hugs and support. It means a lot.
I'm definitely going to check out "Under Our Skin." I think there's a bit of denial going on around me, with my husband and with my mom. My mom, who is completely supportive of detoxing and natural remedies for more "everyday" reasons, was even speculative about me trying to find an LLMD. There's this collective trust of the medical profession, it seems, and also maybe the sense that because TBDs are quite common in our state, that docs must simply know how to treat them. I'm not so trusting. Five years ago, I contracted viral meningitis on the job and it was misdiagnosed at first, mainly due to doctor "opinion" on my spinal tap results. I just don't feel like they know what they're doing.
I'm not thrilled about the NP I'm planning on seeing...she doesn't take insurance...but I can't see it being worth getting "wrong" by not seeing a provider who knows how to treat TBDs. I feel so terribly toxic and sick right now, and I need to get a concrete plan nailed down.
Aura
Posts: 19 | From Hudson, WI, USA | Registered: Nov 2010
| IP: Logged |
lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Hi Aura
I was in the same boat you were re the neck/shoulder pain and sent to a Pain Mgt Specialist (pre-diagnosis). I too fell prey to the cervical epidural procedures, which in the end made me feel MUCH WORSE. And I too had my pain blamed on herniated discs from a car accident 15 yrs prior.
Anyhoo, you were on the right track when you mentioned it was MUSCLE pain. Carol gave you important information regarding Magnesium deficiency.
What she didn't clearly point out that I feel you should look for are Muscle Spazms. (Even my pain guy missed them).
The Mag deficiency causes these spazms - they may look or feel like lumps around the base of your skull, your shoulders, neck region. Just poke around with your knuckle. Find a sore spot and lump any place? The back of my skull was COVERED in them, and they refer pain all over the place. ie. through your ear, jaw, over the top of your skull to behind your eye or making to top of your skull sore, down your arm to your shoulder. If you find one, press really hard and see if the pain elsewhere stops.... If so, you've found one and you've also now figured out what 'referred pain' is.
These things are combatable, and your Pain Mgt guy could help you with this (and insurance should cover it). They give Trigger Point Injections of lidocaine directly into the spasms. (lidocaine only, NO STEROIDS or what they like to call anti-inflammatories). The needle point helps bust the spazm in the muscle and returns blood flow to the area. Plus the lidocaine BLISSFULLY numbs the whole area. I can recall getting up to 7 shots at one time.
Trigger point injections may only provide temporary relief at first, depending on the severity and multitude of spazms you may have. You may have to return for another series in 10 days or so. Took me a few rounds to completely get rid of them.
Then you also need to address the CAUSE of the spazms, which is Magnesium deficiency. For this, the most effective route is IV Magnesium Chloride, followed by IM (inter muscular) IM Sulfate shots.
The thing is, once your body gets low on magnesium, taking an oral supplement will not get you back to normal levels. The body can only absorb a tiny amount at one time. The rest literally ends up in the toilet. An IV is not a big deal - just a bag and a needle and 30 minutes of your time.
Until you can get your hands on a doctor that will properly treat you (and that includes addressing the magnesium deficiency), I would suggest getting a topical Magnesium oil such as Ancient Minerals Magnesium Oil. You spray it on thin skinned areas of your body numerous times throughout the day. It's a bit itchy, but way more effective than taking an oral supplement.
Hope this helps you.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
| IP: Logged |
posted
I've had several knots/areas that spasm for the last few months, mainly in my neck and around my right shoulder; they correspond to the bulging disc in my neck--which has only gotten worse with this infection. The spasms are bad enough that sometimes it feels like there's something crawling around underneath my shoulder. They've tried a few types of muscle relaxants, trigger point injections (steroidal--before I was diagnosed with a TBD)and opioids, which have given me the most relief so far. At least, for the time being, I don't notice the pain much. I'll have to ask my pain doc about the lidocaine injections.
I now have an appointment with an NP who specializes in TBDs..I had a really good phone conversation with her this morning, and feel a little better even knowing that I have the appointment.
Posts: 19 | From Hudson, WI, USA | Registered: Nov 2010
| IP: Logged |
lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
I guess everybody around here is still hung up on calling these TBD's Lyme disease exclusively.
If you've read anything substantial from the ILADS folks or even just Dr B....
(even here on lymenet with the blue underlines),
they should have clearly shows anaplasmosis as one of the little crummy diseases
that come along for the ride down the saliva tubes of the blood sucking varmit that bit you!
Of course you could have picked it up any number of ways...
but the above would be my best guess for contracting the
(IDSA and CDCP are calling a misnomer!
Tick or other vector borne diseases should not all be filed
under the lyme-disease category! However this is what generally happens!@
Just as I was getting off of the puter in another area discussing "Mitral Valve Regurg"
I plunked down in front of the boob tube only to see the latest actor talking about
his "Mitral Valve fibrilation/mini stroke and the
"just out of the test tube box or labrat cure for such a malady!
And darned if I did'nt get rid of mine with KETEK an ABX that they took off the market because of some liver problem complaints.....I took it lots of times....well three to four times anyway....
danged if it did'nt subdue most of the mitral valve problems I had....
probably because of the cystic forms of the chetes not allowing that
heart valve to close properly...so it kinda whistled in the bloodflow....!
Oh Boy!
Did I ever tell you the one about the lab test I was asked to become a part of while down in
Florida....not more then a few months I was back up in Cleveburg and they were advertiing
the same drug in the test at a much increased dose to combat the pain of fibro/myalgia....
that's right....folks....llyrica......
I doubt the testing is conclusive or even finished for that matter!
Does Big Pharma think that the whole country is filled up with lyme desperate morons who believe
the actors and actresses playing patients or doctors on our television sets?
At least they discuss SOME of the side affects....
ya know like "sudden death" and little things like that!
What's SUPER DISAPOINTING is the religious shows on different stations....like the J. Baker
man show....fresh out of "COLLAGE" and back to his old tricks again....white hair....
then black.....now a ball cap....what....
hair transplants?
Gee....does'nt the new blondie help you look and feel young enough?
And instead of selling everyone "survival kits"
" you should be preaching how to become a part of the "RAPTURE"....duhhhhh
Get your fresh permanent grey shaded facials here folks....
with that silver-soul....that's how they pronounce it as if it's something "spiritual" for crying out loud!
You folks have got to be kidding! It has been on all the INFORMATION SHOWS....
Nuff Said! nope....God Bless YFICHRIST AMZ.,Sr
good luck zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD or LL ND should know about: ----------
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Wink]](wink.gif)
Printer-friendly view of this topic