-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Amanda
Frequent Contributor (1K+ posts)
Member # 14107
posted
I'd wait and make sure that you do not have structural damage like a disc ruptured. If you can get one, a MRI with and without contrast is really better.
Any good chiropractor should do an x-ray or ask to see one.
There are many different modalities, some chiropractors are very gentle, others a little more forceful.
I have bad neck pain. I went to one of the more forceful ones, before I got sick I loved a good "crunch".
But a couple years after being sick, I went back and holy smokes it was horrible. Not only neck pain, but all my other symptoms worse as well. I went deaf in my left ear for 2 days (my left jaw also gives me problems).
Which doesnt mean that you will have my problems.
But I suggest you talk to your chiropractor before they do a treatment.
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- This must be Deja Vu. I thought you asked this early and I thought I replied. So, to be sure you have this (and if, for some reason I was dreaming) . . .
Anyone who has or might have lyme should never put force on their neck or spine. Sudden twists can cause damage so are not to be done on anyone with lyme. I had several otherwise excellent professionals do a lot of damage by adjustments that should have never been done on someone with neurolyme to my degree.
My brain felt like it had been electrocuted by the wrong kind of person doing the wrong techniques - many times over the years. Later, with Upledger, that worked very well, though.
This is very important for someone new to all this. Later, after you have this sorted out and know the expertise of who works with you . . . there may be some leeway. But not now - not until you can get more detail about what's going on.
No imaging technique can tell you everything. A good LLMD can guide you to the one they think most appropriate for what is going on for you. They should see you first and physically examine your neck / jaw so they know what to suggest.
But, in the meantime . . .
No handstands, either, sorry ! (Hope that brings a smile!) No hard movements of the head, no "whipping your hair" as is in some teen video that simply astounded me to see. Remember, the brain, brain stem, spine may be swollen. You don't want to push on that.
Gentle techniques such as used by those trained in UPLEDGER INSTITUTE are safe, still remind the PT or DO, or whomever not to suddenly twist, even if they do it with a different technique.
Search Upledger and see who's on their list of practitioners. Often PTs are, or DO (osteopathic) and often they are on insurance plans.
Talk to your area lyme support groups about who they might suggest for body work.
Once you get in to see a LLMD, you will know more about this. And, this is also why, even now before you see a LLMD, call one near you and ask who they recommend for body work.
It is very important that anyone who touches you is LL, not that they will treat lyme but they will know enough about the very special circumstances of a person with (or maybe) with lyme.
Jaw trouble is often about lyme but also often about MAGNESIUM DEFICIENCY. So be sure you are on board with that 3-4 x a day, not all at once.
Body mechanics. Be mindful of your habits.
For some techniques you can do on your own, search FELDENKRAIS TECHNIQUE. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Topic: MAGNESIUM - LINKS sets -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Google: Feldenkrais, TMJ
There are some good links / videos there. This is a gentle approach.
I recall when TMJ was so bad that it really helped to learn how to move my mouth. Apparently, I had been doing it all wrong. Some mirror exercises really showed my how far to the side I was pulling my jaw rather than just going up and down. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I'm just always achy and my jaw is constantly too, and headaches and eye pain .. Making sure my neck is aligned with an xray would be helpful but itd probably be better to wait out to see the llmd. Someone told me a chiro is less pricy than a PT and better to see? I assume PT deals mostly with muscle and my tmj is probably the joint. It never locks but is always achy especially when i develop headaches
Posts: 315 | From Allentown | Registered: May 2014
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posted
The jaw pain i remember started like last year i am assuming it is most likely the lyme..
Posts: 315 | From Allentown | Registered: May 2014
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posted
And keebler, yes i might have already i'm sorry! But i was curious about chiro's and PT's and which would be better .. Not sure what they both exactly deal with
Posts: 315 | From Allentown | Registered: May 2014
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posted
We're all different in how we respond to anything when it comes to Lyme!
Evidently it didn't work for Keebler, but I have benefitted from chiropractic care throughout. I get medium force - not too strong, not too light.
I think any chiropractor should take xrays first, to see what we're doing with.
I also found that Natural Calm magnesium relaxed all my tight muscles for a little while, so mg-deficient tight tissues could be involved and need supplementation.
Cranial work can ease head discomfort.
TMJ can be addressed with a splint. After I had a splint made, the jaw pain went away. That was way long time ago.
My chiropractor handles it with an arthrostim machine - looks like a hand-held gun that rat-a-tats at 12x/sec. He's trained in the Koren Specific Technique to adjust the jaw joint when we hold our mouth in various positions - closed, open, jut forward, pull back.
You could contact the KST folks to see if they have any chiropractors trained in the method in your area.
PTs work on mobility, muscle flexibility and strength.
Every modality does something different. If you have the option to try out various treatment modalities, then you'll find out what works for you.
May I say, everyone promised me they could fix me in the years I was undiagnosed. They couldn't - they could only relieve the symptoms. We have to treat the Lyme disease.
Posts: 13116 | From San Francisco | Registered: May 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- What did not work for was not following advise from a LLMD. Well, I had none and I had not yet read the article that I so wish I had saved the link to but I did not.
It's not just from me, this is expert LLMD advise to not twist the neck, spine. No jumping up and down, whipping the head in dance or sport, no handstands or other undue pressure on the neck. I cannot phrase it as well yet will try.
Well, the brain can be inflamed, too, and that can go along with this and the reasons to be careful.
With lyme, the entire spinal column is so often swollen, compromised in other ways such as myelin sheath around nerves can be less or missing in places . . . the nerve fibers themselves can be so irritated . . . and all the body / brain nerves run through the spine (and that includes the neck).
Problems with soft tissue will NOT show on an x-ray that the standard chiropractor takes.
So, if someone is not as LL as they should be to work on someone with such issues, damage can occur. And there have been numerous reports so that's why that article was written. It was by an ILADS LLMD. I just can't remember who or at what conference or in what capacity . . . it may have been in a presentation and I read the transcript.
At least back 4 years but it could have been more.
I found good Upledger trained DO and PTs and an excellent LMT to work with my body. And they helped in various ways.
What I am saying is to do your homework no less on finding someone to work with your body than you will to find a good LLMD for a treatment plan.
And, if you don't yet have a LLMD, ask the LLMDs near you who they refer patients to for body work.
Ask at the support group meetings.
And if money is out of your pocket for body work, I would first consider putting that toward a LLMD and do what you can on your own for your body until you can be fully assessed by a LLMD.
Even if you can only afford an assessment, and that is clear going in, you can get some detail about what direction you would need to go on your own.
After a LLMD assesses even just the neck / jaw issue, they can tell you what KIND of imaging might be needed, if any. And what kind of other medical support they know of that may be on your insurance plan for safe body work along the way in a support manner.
Robin found the right body work professional for her.
I found many otherwise good ones (for other people) but they must have majoring in "severing spine by hand" technique for those who may have lyme / TBD. The brutality experienced in my brain, nerves that ran all over my body . . . by what were not really harsh by other standards, well, there are no words. And they all seemed as puzzled as I when I hobbled out a worse disaster than when I walked in.
The wrong fit, over and over with various DCs, DOs, PTs, LMTs in the span of many years. Until I just lucked out and a wise GP referred me to the right DO trained in Upledger technique (and there are other similar ones that don't use sudden twisting).
Aside from the matter of finding the right fit, though . . . understand the expectations.
Robin is so correct in that while some of this can help a bit, it's NOT going to fix it if lyme / TBD &/or magnesium or other nutrient issues are the cause.
Alignments can fail to hold when the nerves are irritated by toxins from lyme and cause the muscles to spasm and go bonkers. So, while an adjustment / alignment session might put things back in place, so very often with lyme, it won't stay if the lyme / TBD are not fully addressed.
And, that's also the importance of MAGNESIUM along the way. Magnesium is the best helper to soothe the muscle contractions that pull our bones out of place. And magnesium can help lessen the toxicity of lyme. Win - win. -
[ 10-11-2014, 01:43 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Chiari Malformation (at the base of the neck) is another reason to not just have any imaging. Most imaging techniques can miss it. It must be done a very specific way.
Some TMJ structure issues can hide in a typical x-ray, too. But, as to structure issues, again, if the muscles are pulling the bone / structure, that's not necessary as "structural" a matter as say a defect with actual bone would be.
Any imaging technique costs not just you / insurance but also there's a toll on the body. When one is needed, it's best to be sure it is going to be as specific as possible for you.
A LLMD who has seen for years what lyme / TBD does to the body - as their primary medical focus - can help the most to steer you before embarking on any imaging decisions.
And those in support groups who have been all around the body work block will serve as key guides for you, too. There is a very wide range of skill and technique among DCs, DOs, NDs, PTs, LMTs who do body work.
Some are excellent, some are not. I just hope you find a good fit and can jump to the head of the line right off the bat knowing what to first consider. Someone who does the NUCCA approach might also be a good fit, although UPLEDGER worked better for me and it's full body cranial sacral as opposed to just parts work. -
[ 10-11-2014, 04:02 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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I always say the proof's in the pudding - each of us needs to find out what's going to work for us.
What's good about going to a good chiropractor is they can see exactly which vertebrae are out and fix it - then we feel symptom relief. I'm all for reduction in symptoms! Definitely picks up my mood when I feel better again.
The corrections are temporary, with Lyme, so that's why we have to treat the illness, and any co-infections.
We need to take supplements to restore missing levels of magnesium, thyroid, etc, etc.
I have tried lots of PT, and it never was able to fix neck pain for me. That's just me - we could all be different in how we respond to modalities.
And, there are TMJ dentists you could see who can make you a splint.
Posts: 13116 | From San Francisco | Registered: May 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Robin,
To be clear (as it may not seem like it) but not discounting your notes or experiences, just adding other stuff to consider for someone all new to this.
It is true that if something is out of place and that piece can be set right relief is mighty good.
I hope it does not come across that I'm saying not to do that (for we must have relief where we can find it, eh?), only stressing some thought to just who will put our parts back in place and how. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- A night splint also made a world of difference for me. My experience, though, is to make sure it's out of very hard material, not soft gummy bear stuff (I bit my way right through some of those!)
And the upper & lower set kind that have the screws & hinges off to the side, well, if you get that kind, make sure those are smooth as can be. Mine never were and no amount of wax would help.
The kind that just sat on my upper teeth, hard molded material worked best for me. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Thx, Keebler - I went into all this experience double-blind - I didn't know and they didn't know. So, I do feel like I have a good handle on what contributed to relief and what didn't.
And in that way, we're going to be all different in how we respond.
The bottom line for me still is, symptom relief is good because we feel more sane again!! But, Lyme/co treatment is required, to get anywhere.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
So is tmj pain from lyme the joint itself or the muscle?
What about neck pain?
My dentist said i could try seeing a PT, but i figured theyre more for injury. Do chiro's do alignment AND muscle techniques? When i think of chiro i think of alignment
Posts: 315 | From Allentown | Registered: May 2014
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posted
Oh, inflamed tissues and nerves. To save money, do you recommend i just wait to see the doctor?
Still confused whether a chiro or pt is better for neck and jaw pain Posts: 315 | From Allentown | Registered: May 2014
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Anyone trained in UPLEDGER technique of cranial sacral, IMO.
Ask first at your closest LLMD's office for who they refer people to . . . and ask at your area lyme support groups.
There are various professionals who can work with you. You can never say a DC is better than a PT or the other way around - or a DO better than a LMT, or visa versa. It all depends on their approach and skill.
At UPLEDGER's site, you can see you in your area is trained in that technique. Then ask at your area lyme groups if anyone has been to anyone on that list.
Same with calling the LLMD closest to you. Ask their office manager if anyone on the UPLEDGER trained list they are familiar with, or who else they might recommend.
If someone has this kind of training and if covered by your insurance - and if the lyme community has some experience with them, that would be fantastic. And it's possible. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
I read chiro is good for returning mobility.
Hmm
Posts: 315 | From Allentown | Registered: May 2014
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- It's all about the context and particulars. Generalizations often fail where one has particular needs and the context can be out of the ordinary with serious matters that, well, really matter - as for someone with lyme / TBD.
We can't just throw darts at the phone book.
I have worked with (and not been helped at all or even been damaged by) terrible DCs, DOs, PTs, LMTs, and I have also worked with fabulous, talented and responsible DCs, DOs, PTs, and LMTs who brought some level of relief at various times.
Look to the individual, their skill set, experience and recommendations from the lyme community in your area. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Thank you so much Keebler. It'd be beyyer to wait it out i am assuming, since you never know how doctors do their approach..
Posts: 315 | From Allentown | Registered: May 2014
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You DO know their approach, if you choose someone trained in Upledger technique - it's very specific - and if you talk to others first in your area with similar considerations - the local lyme support groups.
It's a good place to begin, please connect with one or more because you just can't make decisions until you get a sense of who have helped others around you.
From there, you'll learn more at a first appointment. And it can take a while to know if it's a good fit, even with the best research beforehand.
I'm not saying wait for relief. I'm saying wait until you've been able to research your choices. So don't stop now, research your choices by connecting with your local lyme groups. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- This is an excellent group. It's hard to know just where some of the regional groups are with so many "valley" locations but you will know. You will likely find some wonderful people who want to help you connect to the best professionals to help you, in various ways.
Even if just by phone, connections are life-sustaining in, oh, so many ways.
posted
[QUOTE]Originally posted by Kaseyyy: [QB] So is tmj pain from lyme the joint itself or the muscle?
What about neck pain?
My dentist said i could try seeing a PT, but i figured theyre more for injury. Do chiro's do alignment AND muscle techniques? When i think of chiro i think of alignment
TMJ and neck pain are two different entities, I think. The jaw joint muscles are impacted with TMJ. I've mentioned above you can either see a TMJ dentist to get a splint made,
or contact the Koren Specific Technique national headquarters and ask them if there's any practitioners, probably chiropractors, who are trained in using the arthrostim, which for me is staving off TMJ, and I don't have a splint now - I used to.
The neck pain - that's a common Lyme symptom. It can start early on, like it did in my case. Not sure I completely understand why. Perhaps it also involves cranial nerves hitting the neck/shoulder area?
Neck muscles can be tight, maybe it's a weak place in us that we've overused - remember, the ketes like to go where there isn't much oxygen, and tight muscles fit that bill.
In my experience, PT could never help. It was only chiro adjustments putting my bones back in the right place that help me.
If you've lost a neck curve by having a head-forward position, then I can see some common sense value to trying to restore the neck curve so the muscles won't be so tight. That, the chiropractor can tell you about.
What PT can do is stretch out muscles and teach you alignment and strengthening. But, I had sooooo much of that, every year, and it never seemed to do a thing for my neck pain.
Re alignment, that can be important if your head is forward - that in itself is going to tighten muscles. PT, chiro and lots of bodyworkers can work with that.
I was actually most amazed when I took some Natural Calm magnesium powder and all the muscle relaxed for the first time. That's why I think what we're going through is Lyme-related and needs Lyme treatment.
Re who to go see for any of this, do you have any local support groups you could check in with for referrals?
Posts: 13116 | From San Francisco | Registered: May 2006
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Keebler
Honored Contributor (25K+ posts)
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posted
- With a couple different technique names, you can ask those in your area lyme support groups of their experiences. You might also ask as those support groups for things similar to lyme. There may be a TMJ support group near you, too.
"Very gentle, no snapping, cracking or twisting of body . . . "
[and that's what makes this a safe technique in light of the issues discussed above. Very different from Upledger technique yet both have this in common: no snapping, cracking or twisting.] -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I'm so glad Robin repeats this for the emphasis it deserves. I have also found it to be instantly helpful. To make it easier for you, here are some choices from iHerb.com
Their website. Just plug in your city / town / zip. There are at least a half dozen stores with an Allentown address that have some form of this brand on their shelves. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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quote: If you've lost a neck curve by having a head-forward position, then I can see some common sense value to trying to restore the neck curve so the muscles won't be so tight. That, the chiropractor can tell you about.
Did you have the forward neck position and if so did a chiro help you restore it?
Posts: 832 | From Somewhere | Registered: Nov 2010
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posted
So do chiropractors tell you excercises to stretch muscles also? I will be asking my dentist for a splint just in case.
Posts: 315 | From Allentown | Registered: May 2014
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posted
I didn't mean to make anyone upsets with these posts and questions. Sorry.
Posts: 315 | From Allentown | Registered: May 2014
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Kasey,
It's not that but we see you running in circles. Understandably, it's hard to know what to do first.
No one here can answer the questions that can only be answered by a medical assessment. You have to make some phone calls now to figure out who to see to assess your neck. What I suggest
in light of the fact you do not yet have a LLMD and finances / insurance seems to be a delay - for now.
1. Check both the Upledger links and the Koren links to see the lists of practitioners in your area.
2. Call the LLMD of your choice near you and see who they refer patients to for neck issues. They may suggest a couple outright.
See if any on the Upledger or Koren lists may also be whom they suggest
3. Call your area lyme support groups. Do the same thing.
You may get some new names from both the LLMD(s) and from the support groups for someone who has been good for those with lyme and understand key issues.
And / or, of the lists from those two techniques that do not use sudden twisting movements, you may find one who has also been helpful to others with lyme.
4. Then check your insurance coverage and hopefully, some name will match.
Keep in mind that there are at least 3 kinds of medical professionals who do similar work and all could receive training in either Upledger or Koren . . . or otherwise be on the "lyme friendly" list.
DC - chiropractor
DO - doctor of osteopathy
PT - physical therapist
LMT - Licensed Massage Therapist. They not likely covered by insurance yet you may find one familiar with lyme / good for others and affordable.
All of these kinds of professionals will guide you in practical matters of posture, the kinds of stretching (nor NOT) to do and other matters
The first 2 (DC or DO) would be able to determine if you might need some kind of imaging done and what kind. They need to see you first to know - and to know the exact kind of image and how, exactly to order how that would be done.
And, if they think a referral to someone else is needed, they can also do that.
5. MAGNESIUM is still really important. 3-4 x a day, never all at once. And a good kind that is absorbable. See the details in the magnesium links set previous posted. -
[ 10-14-2014, 12:19 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- If you have bruxism (clenching, grinding of teeth - usually when sleeping) your dental insurance may cover some kinds of treatment such as a dental splint.
Often, a mouth splint / guard is for TMJ and, often, TMJ stuff is not covered by any dental or medical insurance. There may be a few exceptions. Talk to your dentist's office manager as to how they handle it and how it might be covered, if needed. It may not be needed so the dentist would first check the teeth wear pattern and other things to determine.
The dentist is not usually the one who does the impressions / molds and makes the splint. That is someone else your dentist refers you to.
Magnesium is the number one helper, though, so be sure to get that on board with consistency. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
okay. Could the jaw pain, neck pain, headache from lyme cause otc to not help completely? Or maybe i have a high tolerance now. Also can you talk to support groups online or does it have to be in person, i just see the persons email and where they meet
Posts: 315 | From Allentown | Registered: May 2014
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posted
I think you could also ask some of the health providers your questions - call them up and ask them what they could offer you re adjustments, stretching, strengthening.
It's a double experience, between what they do and how you respond. If you like something, do more of it. If you don't, stop and do something else.
We here cannot tell you how you're going to do.
Frankly, support group can give you referrals to people they like, but they also cannot know how you're going to respond.
So I agree with posters here - start making some calls, and try some people out.
Still the bottom line with us is, we have an infection or two or three that needs treatment. Chiros and PTs and massage people are not going to fix our Lyme/co illnesses - they can make us feel better.
Posts: 13116 | From San Francisco | Registered: May 2006
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do chiros do massages / excercises too?
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