Hope is good! Great update! I know how much getting a concrete diagnosis with treatment options! I hope your coming appointments shed needed light for permanent relief!
Animal house 😂. That’s so true with the Lyme. It’s easy to attribute everything to the Lyme. That’s good you have found another diagnosis, and it opens up new treatment options. That’s amazing you have the support you do with your boyfriend. I have similar support and it really is very helpful during hard times and when things are flaring. Yes immune system build up has been pretty much the number 1 thing I have been doing as well with herbals/colloidal silver, HBOT etc. Good luck, I hope this is a missing piece of the puzzle.
Thanks, man! We’re still taking things one day at a time. Some days are better than others, and we’re in a constant search to better manage and figure out all my health stuff. On another note, Rog wanted me to mention for you to keep an eye out for an opening day vlog here in the channel, hopefully in the next couple of days. He can’t get to the games or the stadium still, due to covid stuff (and having to be extremely careful because my health is so fragile), but we did celebrate opening day here at home, and I think you’ll enjoy it! We definitely decorated with all things Braves.⚾️♥️💙⚾️ -Bec
Good to hear you are figuring things out!! I too have been told by more then 1 doctor that I probably have hypermobility EDS, POTS & MCAS!! My Mast Cell is way going crazy and found out that camp fire smoke sends me into Anaphylaxis and have gone through 12 Epi pens since March!! I've also found out I have Bartonella Vinosii & Henselae, Babesia, Yersenia, Lyme & possibly Mold Exposure in my apartment. Becca can you tell me what Specialty of Doctor diagnosed you with the H-eds?? I'm still trying to find a Dr to diagnose me that accepts Medicare. Anyway, my health continues to worsen and due to my mcas & the Bartonella that we re yet to treat because I keep having reactions to the meds. I keep losing weight. I can safely eat about 8 foods w/o fear of Anaphlaxis it's very scary but I continue to keep my faith in God that he will protect me. Becca & Rog I hope you continue to get more answers and ways of treatment that will help you, Becca, feel better!!
Praise the Lors for great doctors, and for more information!! I'm so glad for you!! Thankyou for the update!! Yes, please keep us posted as you are able on how you're doing. ❤ I'd been thinking about you and wondering how you're doing, and praying too!! God bless you both!! ❤🤗🙏🏻
That’s actually one of the things on our list of referrals and to-do items. When we traveled in December 2018 for it, there was a lot of confusion, but since learning I have hEDS in July, I’ve had a referral to a medical center who has a few doctors who can not only help determine and/or fix a CSF leak, but who often treat it in the context of EDS, and they also can help determine other factors that may be at play, like the CCI which was confirmed in Feb 2018, or any number of other similar type things (e.g. Chiari malformation and other similar conditions). I’m definitely not saying I have chiari or any of the other yet-to-be-accurately-tested, confirmed, or ruled out (other than the CCI, which we already know is a factor). While my clinical symptoms have fit nearly perfectly with spinal CSF leak presentation, we haven’t been able to get to the specialists who are equipped to handle all of this, because it’s a several hour drive. The drive itself isn’t the hardest part-we’ve had to travel at least 5.5 hours every 2 months 6-7 years, so we’ve found our ways to make it work-but staying in a hotel is currently not possible for me, because my MCAS reactions and sensitivities have greatly intensified over the past 4 months or so, and hotels are filled with fragrance: cleaners, detergent, plug-ins, etc., which triggers a mast cell attack for the duration of the overnight stay/time in the hotel. So, I’m sorry this is such a long answer, but what I’m trying to get to is: I have an appointment with an immunologist who is well versed in MCAS and other immune disorders/immune dysfunction, and who also takes particular interest in, and is educated in, treating those immune conditions in those who have EDS. We’re hoping we’ll come away with an effective plan to treat and manage the systemic MCAS reactions (and other immune system-related issues), once I have the appointment with the immunologist next week.
Lyme is Lame I feel for you and am definitely interested to find out what they say! I have been diagnosed with New Daily Persistent Headache (NDPH) and have had a 24-7 headache for about 2 years, never ending, with only brief periods of relief (.5-1 pain scale) in the last 6 months or so from a variety of treatments. Although I am not positive for Lyme, (it was a possibility at one point) I empathize with your Lyme journey and struggles. Especially the chronic pain, motion sickness, photo and phonophobia, allodynia, sensitivities to fragrance, etc. The word outside my door is less friendly than it used to be, that’s for sure (major understatement). And I live in TN, so I also have to travel multiple hours to find good care, which is expensive and exhausting. I feel your pain and you are not alone! I have read a lot about CSF, hyper mobility, EDS, etc. and am excited (odd thing to say but I bet you understand) for your diagnosis. I know that desperation in looking for answers, hoping that maybe if I just try a little harder I can find a cure! A reason for all of this, and get my old life, body, and mind back. I just want you to know that I think you’re incredibly strong and brave. Keep it up. And shout out to your amazing hubby. I also have a super supportive partner in all of this, my boyfriend. They’re the real MVPs. Lol. Take good care of yourself. Sending you prayers and hugs. 🤗
Hope is good! Great update! I know how much getting a concrete diagnosis with treatment options! I hope your coming appointments shed needed light for permanent relief!
Yay, I’m glad to see you back!
🙌👏 YES! Welcome back, God is good.... his timing is questionable though 😂 You both look so relieved that’s priceless ❤️ YAY! This is very good news!
Want to mention the spero clinic in Fayetteville to you
Animal house 😂. That’s so true with the Lyme. It’s easy to attribute everything to the Lyme. That’s good you have found another diagnosis, and it opens up new treatment options. That’s amazing you have the support you do with your boyfriend. I have similar support and it really is very helpful during hard times and when things are flaring.
Yes immune system build up has been pretty much the number 1 thing I have been doing as well with herbals/colloidal silver, HBOT etc.
Good luck, I hope this is a missing piece of the puzzle.
I hope you feel better
Thanks, man! We’re still taking things one day at a time. Some days are better than others, and we’re in a constant search to better manage and figure out all my health stuff.
On another note, Rog wanted me to mention for you to keep an eye out for an opening day vlog here in the channel, hopefully in the next couple of days. He can’t get to the games or the stadium still, due to covid stuff (and having to be extremely careful because my health is so fragile), but we did celebrate opening day here at home, and I think you’ll enjoy it! We definitely decorated with all things Braves.⚾️♥️💙⚾️
-Bec
@@LymeStealsGodHeals ok! I will look for that vlog and i hope your health issue vanishes🙏🙏🙏 tell rog thanks!! Go braves!
Thanks! I’ll pass it along! Go Braves!
Good to hear you are figuring things out!! I too have been told by more then 1 doctor that I probably have hypermobility EDS, POTS & MCAS!! My Mast Cell is way going crazy and found out that camp fire smoke sends me into Anaphylaxis and have gone through 12 Epi pens since March!! I've also found out I have Bartonella Vinosii & Henselae, Babesia, Yersenia, Lyme & possibly Mold Exposure in my apartment.
Becca can you tell me what Specialty of Doctor diagnosed you with the H-eds??
I'm still trying to find a Dr to diagnose me that accepts Medicare. Anyway, my health continues to worsen and due to my mcas & the Bartonella that we re yet to treat because I keep having reactions to the meds. I keep losing weight. I can safely eat about 8 foods w/o fear of Anaphlaxis it's very scary but I continue to keep my faith in God that he will protect me.
Becca & Rog I hope you continue to get more answers and ways of treatment that will help you, Becca, feel better!!
I have hEDS too
Praise the Lors for great doctors, and for more information!! I'm so glad for you!! Thankyou for the update!! Yes, please keep us posted as you are able on how you're doing. ❤ I'd been thinking about you and wondering how you're doing, and praying too!! God bless you both!! ❤🤗🙏🏻
Ghostbusters! Mass hysteria!
Did you ever do an MRI? Because I have some of the same symptoms as you have but I have something diffrent!
Also could you tell me how much you scored on the beighton score
♥
Did you ever find out if you have a CSF leak?
That’s actually one of the things on our list of referrals and to-do items. When we traveled in December 2018 for it, there was a lot of confusion, but since learning I have hEDS in July, I’ve had a referral to a medical center who has a few doctors who can not only help determine and/or fix a CSF leak, but who often treat it in the context of EDS, and they also can help determine other factors that may be at play, like the CCI which was confirmed in Feb 2018, or any number of other similar type things (e.g. Chiari malformation and other similar conditions).
I’m definitely not saying I have chiari or any of the other yet-to-be-accurately-tested, confirmed, or ruled out (other than the CCI, which we already know is a factor).
While my clinical symptoms have fit nearly
perfectly with spinal CSF leak presentation, we haven’t been able to get to the specialists who are equipped to handle all of this, because it’s a several hour drive.
The drive itself isn’t the hardest part-we’ve had to travel at least 5.5 hours every 2 months 6-7 years, so we’ve found our ways to make it work-but staying in a hotel is currently not possible for me, because my MCAS reactions and sensitivities have greatly intensified over the past 4 months or so, and hotels are filled with fragrance: cleaners, detergent, plug-ins, etc., which triggers a mast cell attack for the duration of the overnight stay/time in the hotel.
So, I’m sorry this is such a long answer, but what I’m trying to get to is: I have an appointment with an immunologist who is well versed in MCAS and other immune disorders/immune dysfunction, and who also takes particular interest in, and is educated in, treating those immune conditions in those who have EDS.
We’re hoping we’ll come away with an effective plan to treat and manage the systemic MCAS reactions (and other immune system-related issues), once I have the appointment with the immunologist next week.
Lyme is Lame I feel for you and am definitely interested to find out what they say! I have been diagnosed with New Daily Persistent Headache (NDPH) and have had a 24-7 headache for about 2 years, never ending, with only brief periods of relief (.5-1 pain scale) in the last 6 months or so from a variety of treatments.
Although I am not positive for Lyme, (it was a possibility at one point) I empathize with your Lyme journey and struggles. Especially the chronic pain, motion sickness, photo and phonophobia, allodynia, sensitivities to fragrance, etc. The word outside my door is less friendly than it used to be, that’s for sure (major understatement). And I live in TN, so I also have to travel multiple hours to find good care, which is expensive and exhausting. I feel your pain and you are not alone!
I have read a lot about CSF, hyper mobility, EDS, etc. and am excited (odd thing to say but I bet you understand) for your diagnosis. I know that desperation in looking for answers, hoping that maybe if I just try a little harder I can find a cure! A reason for all of this, and get my old life, body, and mind back.
I just want you to know that I think you’re incredibly strong and brave. Keep it up. And shout out to your amazing hubby. I also have a super supportive partner in all of this, my boyfriend. They’re the real MVPs. Lol.
Take good care of yourself. Sending you prayers and hugs. 🤗