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ANY LYME DISEASE SUFFERS OUT THERE?

Posted by sundancerdb78 @sundancerdb78, 4 days ago

I came down with what doctors and we decided was Lyme Disease 8 years ago!
I still have "EPISODIES" where i hurt all over or in a particular spot and extreme fog and dizziness! I take Oxycodone to help my headaches that I have had from the beginning! The rest I have to live with!
I subscribe to the Lyme web pages! Always looking for answers!
I guess I'm reaching out for some new things or research someone has done to help! Or just some help dealing with it!
In doing my initial research 8 years ago I read a quote, "you can put 30 people in a room with Lyme and they will have 30 different symptoms!"
My last PCP , that I fired, said he talked to 2 infectious disease doctors and they said that "LYME DOES NOT EXISIT!"
It's very frustrating to have your life turned upside down and so many people don't understand!
Thanks, RB

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Profile picture for car0
car0 | @car0 | 3 days ago

How ironic.
I've long stopped looking at these, and glanced at this because I was notified someone agreed with a post from last year! I've got LC, but I've done a boatload of research on Lyme.
My child has had Lyme ( + 2co-infections) for 10 years. Got it at 11. He has gone thru hell. Is going thru currently. He has been so disabled he wasn't able to attend middle or high school, and we've seen 3 of the "biggest names" of Lyme--- nothing has helped. ----I get it----

I am so sorry.

Hope this helps? Adopt as see fit.
My Rules:
1. Never go infectious disease route ever
2. Vet drs before if you can: your mental health does NOT need to hear "its in your head". Protect yourself.
3. Be persistent, but not pesky with drs who are good. (NOT so with insurance... ALL they know is pesky! They havent paid for anything.)
4. Subscribe to Lyme Times and any other Lyme newsletter you can. That is where I've found out about new treatments and "new successful" Lyme "treating doctors." The last 3 protocols have been found by me, and then taken to our Dr.
5. ILLADS is for prof. medical providers, but they have good educational stuff. Look through every place that treats Lyme. BUT: Many "big name" hospitals or med centers don't believe in chronic Lyme ( like our host here)
6. Get recs on providers!. (We see a psychiatrist as our Lyme Dr, because he is the one who diagnosed him; and now our doc has kind of been dragged into the Lyme world.) Those are the good (medical) ones: they start out as rheumatologists, pediatricians,etc. (but NOT inf. Disease.) and then they had patients no one could or would help, so they become Lyme drs.
7. Get a support system. Find people you can trust and tell them what is going on. Online is ok, but there are lots of crackpots pushing their cure
( you know? Dip magnets from Mexico into mayo and suck at night? I just made that up, but it gets old.) Do therapy, but w/ a therapist who specializes in chronic illness. (We've tried others, and telling them what is going on just doesn't compute--they wanted to make exercise goals, or "fix it". A bug is causing this, not a pulled muscle, or your slovenly lack of energy!! Most models of therapy/treatment cannot look beyond what THEY know or were taught. Find someone near you, and ask them if they have recs for health therapists.
8. This is the worst. I think. Hands down. I almost died from Covid, and then from Long Covid... but this?? This never stops. When you get treatments you get Herxheimer reactions: your body reacts to the drugs, the bugs react, and your body becomes the battlefield-- think WWI: toxic killing mustard gas floating around the air, trenches filled with crying wounded parts, reeking, miserable and traumatic.

I hope this helps? Or... At least you know you're not alone.

REPLY
2 replies
Profile picture for Becky, Volunteer Mentor
Mentor
Becky, Volunteer Mentor | @becsbuddy | 2 days ago
In reply to @car0 "How ironic. I've long stopped looking at these, and glanced at this because I was notified..." + (show)
Profile picture for car0 @car0

How ironic.
I've long stopped looking at these, and glanced at this because I was notified someone agreed with a post from last year! I've got LC, but I've done a boatload of research on Lyme.
My child has had Lyme ( + 2co-infections) for 10 years. Got it at 11. He has gone thru hell. Is going thru currently. He has been so disabled he wasn't able to attend middle or high school, and we've seen 3 of the "biggest names" of Lyme--- nothing has helped. ----I get it----

I am so sorry.

Hope this helps? Adopt as see fit.
My Rules:
1. Never go infectious disease route ever
2. Vet drs before if you can: your mental health does NOT need to hear "its in your head". Protect yourself.
3. Be persistent, but not pesky with drs who are good. (NOT so with insurance... ALL they know is pesky! They havent paid for anything.)
4. Subscribe to Lyme Times and any other Lyme newsletter you can. That is where I've found out about new treatments and "new successful" Lyme "treating doctors." The last 3 protocols have been found by me, and then taken to our Dr.
5. ILLADS is for prof. medical providers, but they have good educational stuff. Look through every place that treats Lyme. BUT: Many "big name" hospitals or med centers don't believe in chronic Lyme ( like our host here)
6. Get recs on providers!. (We see a psychiatrist as our Lyme Dr, because he is the one who diagnosed him; and now our doc has kind of been dragged into the Lyme world.) Those are the good (medical) ones: they start out as rheumatologists, pediatricians,etc. (but NOT inf. Disease.) and then they had patients no one could or would help, so they become Lyme drs.
7. Get a support system. Find people you can trust and tell them what is going on. Online is ok, but there are lots of crackpots pushing their cure
( you know? Dip magnets from Mexico into mayo and suck at night? I just made that up, but it gets old.) Do therapy, but w/ a therapist who specializes in chronic illness. (We've tried others, and telling them what is going on just doesn't compute--they wanted to make exercise goals, or "fix it". A bug is causing this, not a pulled muscle, or your slovenly lack of energy!! Most models of therapy/treatment cannot look beyond what THEY know or were taught. Find someone near you, and ask them if they have recs for health therapists.
8. This is the worst. I think. Hands down. I almost died from Covid, and then from Long Covid... but this?? This never stops. When you get treatments you get Herxheimer reactions: your body reacts to the drugs, the bugs react, and your body becomes the battlefield-- think WWI: toxic killing mustard gas floating around the air, trenches filled with crying wounded parts, reeking, miserable and traumatic.

I hope this helps? Or... At least you know you're not alone.

Jump to this post

@car0 Thank you for this information! I just read a book, titled “Chronic” by Steven Phillip, which told of his journey thru Lyme toward becoming a Lyme specialist. I know/knew nothing about Lyme disease so the book was very interesting. Hopefully, it was a good choice1

REPLY
Profile picture for car0
car0 | @car0 | 1 day ago

I'm so glad it was helpful to read, both the book and my self

REPLY
Profile picture for sundancerdb78
sundancerdb78 | @sundancerdb78 | 1 day ago

car0,
Your post made me cry!
Your advice was Heartwarming!
ONE OF THE BEST SUMATIONS OF LYME I HAVE SEEN!
Through the 8 years I have read thousands of pages of research and all of the prominent doctors books on Lyme!
So Sad many of doctors refuse to admit it exist!
Being a long time suffer my journey has reached a new unfortunately a new stage! In reading the latest information I have found the Late Stage Lyme that Naprapathy is symptom some older people develop!
Started first in my feet! My toes feel like I have a 1,000 needles in them! Especially debilitating when I get into bed for the night!
Many of the same symptoms are exasperated by the Naprapathy! Dizziness, balance, ability to walk and so on!
My Best to both you and your son!
I hope more Lyme Suffers join like we had several years ago1
THANKS!
RB -SUNDANCE

REPLY
Profile picture for sueborfl
sueborfl | @sueborfl | 12 hours ago
In reply to @car0 "How ironic. I've long stopped looking at these, and glanced at this because I was notified..." + (show)
Profile picture for car0 @car0

How ironic.
I've long stopped looking at these, and glanced at this because I was notified someone agreed with a post from last year! I've got LC, but I've done a boatload of research on Lyme.
My child has had Lyme ( + 2co-infections) for 10 years. Got it at 11. He has gone thru hell. Is going thru currently. He has been so disabled he wasn't able to attend middle or high school, and we've seen 3 of the "biggest names" of Lyme--- nothing has helped. ----I get it----

I am so sorry.

Hope this helps? Adopt as see fit.
My Rules:
1. Never go infectious disease route ever
2. Vet drs before if you can: your mental health does NOT need to hear "its in your head". Protect yourself.
3. Be persistent, but not pesky with drs who are good. (NOT so with insurance... ALL they know is pesky! They havent paid for anything.)
4. Subscribe to Lyme Times and any other Lyme newsletter you can. That is where I've found out about new treatments and "new successful" Lyme "treating doctors." The last 3 protocols have been found by me, and then taken to our Dr.
5. ILLADS is for prof. medical providers, but they have good educational stuff. Look through every place that treats Lyme. BUT: Many "big name" hospitals or med centers don't believe in chronic Lyme ( like our host here)
6. Get recs on providers!. (We see a psychiatrist as our Lyme Dr, because he is the one who diagnosed him; and now our doc has kind of been dragged into the Lyme world.) Those are the good (medical) ones: they start out as rheumatologists, pediatricians,etc. (but NOT inf. Disease.) and then they had patients no one could or would help, so they become Lyme drs.
7. Get a support system. Find people you can trust and tell them what is going on. Online is ok, but there are lots of crackpots pushing their cure
( you know? Dip magnets from Mexico into mayo and suck at night? I just made that up, but it gets old.) Do therapy, but w/ a therapist who specializes in chronic illness. (We've tried others, and telling them what is going on just doesn't compute--they wanted to make exercise goals, or "fix it". A bug is causing this, not a pulled muscle, or your slovenly lack of energy!! Most models of therapy/treatment cannot look beyond what THEY know or were taught. Find someone near you, and ask them if they have recs for health therapists.
8. This is the worst. I think. Hands down. I almost died from Covid, and then from Long Covid... but this?? This never stops. When you get treatments you get Herxheimer reactions: your body reacts to the drugs, the bugs react, and your body becomes the battlefield-- think WWI: toxic killing mustard gas floating around the air, trenches filled with crying wounded parts, reeking, miserable and traumatic.

I hope this helps? Or... At least you know you're not alone.

Jump to this post

Agree with everything you said and to the first person who opened up the subject, you will be met with more nuts than legitimate Lyme literate mds. Yes they cost a fortune but we’ve found a way to be reimbursed.
I was bitten in NY and now retired in Florida. It’s the worst. I’ve had to deal with this TBD for cover 30 years and NOTHING has changed. Good luck to all.

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