God bless you two too! My word going into this year is Hope. Hope in Christ, and hope for health to improve, even if it is baby steps. Much love and hugs, Michelle 🤗
From Sunrise To Sunset I’m a big fan of that word!😊 And baby steps are still steps, so it’s still progress, so yay!😉 Prayers and gentle hugs for you from the Bluegrass.
My Word is Perseverance!! November 2019 I was diagnosed with EDS hypermobility (type 3) & Classical (type 1). It seems to be one thing after another with me but God continues to give e the strength to persevere. I continue to struggle with Lyme, Bartonella & Babesia. I also Have MCAS and refuse to let the devil win. It's good to see a video from you 2 again!! I continue pray for your health and well being.
Jennifer Brewington That’s an excellent word! I’m so sorry things keep piling on, but God WILL give you the strength to persevere until His Will is revealed. Thanks so much for sharing so I can better target my prayers for you.♥️🙏🏼
Tana Giberson That’s an awesome word, thanks for letting us know! Praying you’re able to truly feel health and healing in many ways in 2020. Even if the ways are unexpected.♥️🙏🏼
Are you asking about me, personally, or just those with EDS, in general? I currently have a definitive diagnosis of Craniocervical instability (early 2018), but the imaging for that wasn’t the same imaging needed to determine some of the other things. Chiari is suspected by my main EDS doc, and the suspicion of chiari, and many other neck/head/brain issues possible in EDS, and I was given a referral to a group of specialists (all in the same medical center) who help many with EDS determine which other issues, if any, are going on in that regard (CCI, AAI, Chiari, spinal CSF leak, other similar things), and find ways to treat and manage whatever the results show. Unfortunately, we can’t travel for me to see them just yet, because it would require a multi-night stay in a hotel, and I can’t tolerate any time in a hotel right now (smells, chemicals, etc). But, hopefully, once I can have my appointment with the recommended immunologist (another referral by my main EDS doc), we’ll be able to finally start different, and effective, treatments for MCAS, and ideally be able to travel to the other places we need to travel, since my mast cell reactions are the main reason I’m unable to travel. Right now. Along with neck/head stuff in a car, even when I’m wearing my hard collar (which was rxed by the doctor who diagnosed me with CCI in 2018). That’s kind of the answer for ME right now. I don’t want to get too specific about the things for which we don’t yet have definitive answers, but I wanted to try to cover many bases along the lines of what your question was asking. If you were wondering in general, I’m sorry for the novel above. ;-)
@@LymeStealsGodHeals yes I was asking about you. Did you ever get a Digital Motion Xray (by DMX Works - not the old Fluroscopy)? Sorry if I'm asking things I don't remember if you told me, it's been a while. Did anyone suggest prolotherapy? EDS group I was in on FB seem to do it and helps. What state you guys in?
No worries about the questions! I’m always happy to answer to the best of my ability. The DMX-ray was actually the first and main imaging that easily discovered the CCI, but my doc does want me to have an upright MRI and/or a very specific multi-positional MRI to better check the cervical spine area for some of the other things that might be going on. Prolotherapy was mentioned to me, but it wasn’t necessarily recommended, due to the nature of my head/neck symptoms and pain, but it was thrown out there just for info, and like you, I’ve seen others say it works wonders for them. I know one person, personally, in our small town who had it done 2 hours away, and it didn’t help his symptoms (which were almost identical to many symptoms of EDS-related instability, etc), but he also doesn’t have EDS-he just has symptoms that are very similar. So, it’s not exactly the best example to use for those who do have EDS or HSD, as far as a gauge of how well prolotherapy may work for EDS, but it is one in-person, real-life anecdote. I haven’t had prolotherapy myself, because until we make sure we cover all our bases in figuring out the head/neck/brain stuff, it was determined to be a risk not worth taking. Not yet, at least. We based this partially on how I’ve reacted to injections in the area before (not prolotherapy, but the physical act of an injection in the area has caused major issues before), as well as CNS sensitization, which can make even the most helpful therapies do more harm than good. Like I said near the beginning, though, I’ve heard many with EDS say prolotherapy helps them significantly, so it’s something I’d at least look into if I were you, and it’s something I’m keeping on my list of possible future treatments, if my doctor agrees, once my body can make the trip and handle the treatment. I WAS recommended to try to get a very specific, deeper, more targeted type of cold laser therapy than just basic cold laser therapy that’s been around a long time, by the doctor who discovered my CCI via DMX. This is considered “class 4” cold laser therapy, which is the level designation needed for most chronic pain patients to feel relief (as opposed to a weaker class 1 or class 2 level of laser therapy, or even many class 3 options) and see systemic improvements in health. It would have required going to the office to receive it 3x a week for 12 weeks, so it wasn’t feasible physically or financially, but I’ve heard others rave about it helping them, as well, and I definitely want to try this when I’m physically able to travel and stick to the schedule. The two brand names that were mentioned to me were LUMIX and K-LASER. There are others, but those are the ones recommended by the doc who discovered my CCI. It could be worth researching in case you ever think you want to try it. We’re in KY, but if I want to see doctors who are familiar with my conditions and the options to treat them, we have to travel or have phone/Skype appointments.
Lyme is Lame ah KY! Im such an Ale81 fan! Love KY. Used to visit Owingsville (spelling) I did 2 rounds or Prolotherapy not PRP which they recommend. Its a painful 2 weeks but tolerable. My C2 is rotated I dont see your dmx uploaded .. was it? Dying to see your CT scan if you have, I presume you’re more tigeminal with the ice? Im facet pain, loopy cerebral sensations, queasy legs, tinnitus, clunking neck. Admire your spirit and you’re husband is awesome. Romans 8 is great My spirit gets stuck in JOB chapter 6 often
God bless you two too! My word going into this year is Hope. Hope in Christ, and hope for health to improve, even if it is baby steps. Much love and hugs, Michelle 🤗
From Sunrise To Sunset I’m a big fan of that word!😊 And baby steps are still steps, so it’s still progress, so yay!😉 Prayers and gentle hugs for you from the Bluegrass.
My Word is Perseverance!!
November 2019 I was diagnosed with EDS hypermobility (type 3) & Classical (type 1). It seems to be one thing after another with me but God continues to give e the strength to persevere.
I continue to struggle with Lyme, Bartonella & Babesia. I also Have MCAS and refuse to let the devil win.
It's good to see a video from you 2 again!! I continue pray for your health and well being.
Jennifer Brewington That’s an excellent word! I’m so sorry things keep piling on, but God WILL give you the strength to persevere until His Will is revealed. Thanks so much for sharing so I can better target my prayers for you.♥️🙏🏼
you're awesome and have a great year and my word is healthy.
Tana Giberson That’s an awesome word, thanks for letting us know! Praying you’re able to truly feel health and healing in many ways in 2020. Even if the ways are unexpected.♥️🙏🏼
♥
My word would have to be hope
With EDS - no Chiari? Or CCJ instability?
Are you asking about me, personally, or just those with EDS, in general?
I currently have a definitive diagnosis of Craniocervical instability (early 2018), but the imaging for that wasn’t the same imaging needed to determine some of the other things.
Chiari is suspected by my main EDS doc, and the suspicion of chiari, and many other neck/head/brain issues possible in EDS, and I was given a referral to a group of specialists (all in the same medical center) who help many with EDS determine which other issues, if any, are going on in that regard (CCI, AAI, Chiari, spinal CSF leak, other similar things), and find ways to treat and manage whatever the results show.
Unfortunately, we can’t travel for me to see them just yet, because it would require a multi-night stay in a hotel, and I can’t tolerate any time in a hotel right now (smells, chemicals, etc).
But, hopefully, once I can have my appointment with the recommended immunologist (another referral by my main EDS doc), we’ll be able to finally start different, and effective, treatments for MCAS, and ideally be able to travel to the other places we need to travel, since my mast cell reactions are the main reason I’m unable to travel.
Right now. Along with neck/head stuff in a car, even when I’m wearing my hard collar (which was rxed by the doctor who diagnosed me with CCI in 2018).
That’s kind of the answer for ME right now. I don’t want to get too specific about the things for which we don’t yet have definitive answers, but I wanted to try to cover many bases along the lines of what your question was asking.
If you were wondering in general, I’m sorry for the novel above. ;-)
@@LymeStealsGodHeals yes I was asking about you.
Did you ever get a Digital Motion Xray (by DMX Works - not the old Fluroscopy)?
Sorry if I'm asking things I don't remember if you told me, it's been a while.
Did anyone suggest prolotherapy? EDS group I was in on FB seem to do it and helps.
What state you guys in?
No worries about the questions! I’m always happy to answer to the best of my ability.
The DMX-ray was actually the first and main imaging that easily discovered the CCI, but my doc does want me to have an upright MRI and/or a very specific multi-positional MRI to better check the cervical spine area for some of the other things that might be going on.
Prolotherapy was mentioned to me, but it wasn’t necessarily recommended, due to the nature of my head/neck symptoms and pain, but it was thrown out there just for info, and like you, I’ve seen others say it works wonders for them.
I know one person, personally, in our small town who had it done 2 hours away, and it didn’t help his symptoms (which were almost identical to many symptoms of EDS-related instability, etc), but he also doesn’t have EDS-he just has symptoms that are very similar. So, it’s not exactly the best example to use for those who do have EDS or HSD, as far as a gauge of how well prolotherapy may work for EDS, but it is one in-person, real-life anecdote.
I haven’t had prolotherapy myself, because until we make sure we cover all our bases in figuring out the head/neck/brain stuff, it was determined to be a risk not worth taking. Not yet, at least.
We based this partially on how I’ve reacted to injections in the area before (not prolotherapy, but the physical act of an injection in the area has caused major issues before), as well as CNS sensitization, which can make even the most helpful therapies do more harm than good.
Like I said near the beginning, though, I’ve heard many with EDS say prolotherapy helps them significantly, so it’s something I’d at least look into if I were you, and it’s something I’m keeping on my list of possible future treatments, if my doctor agrees, once my body can make the trip and handle the treatment.
I WAS recommended to try to get a very specific, deeper, more targeted type of cold laser therapy than just basic cold laser therapy that’s been around a long time, by the doctor who discovered my CCI via DMX.
This is considered “class 4” cold laser therapy, which is the level designation needed for most chronic pain patients to feel relief (as opposed to a weaker class 1 or class 2 level of laser therapy, or even many class 3 options) and see systemic improvements in health.
It would have required going to the office to receive it 3x a week for 12 weeks, so it wasn’t feasible physically or financially, but I’ve heard others rave about it helping them, as well, and I definitely want to try this when I’m physically able to travel and stick to the schedule.
The two brand names that were mentioned to me were LUMIX and K-LASER. There are others, but those are the ones recommended by the doc who discovered my CCI. It could be worth researching in case you ever think you want to try it.
We’re in KY, but if I want to see doctors who are familiar with my conditions and the options to treat them, we have to travel or have phone/Skype appointments.
Lyme is Lame ah KY! Im such an Ale81 fan! Love KY. Used to visit Owingsville (spelling)
I did 2 rounds or Prolotherapy not PRP which they recommend. Its a painful 2 weeks but tolerable.
My C2 is rotated
I dont see your dmx uploaded .. was it? Dying to see your CT scan if you have,
I presume you’re more tigeminal with the ice?
Im facet pain, loopy cerebral sensations, queasy legs, tinnitus, clunking neck.
Admire your spirit and you’re husband is awesome.
Romans 8 is great
My spirit gets stuck in JOB chapter 6 often