This is topic Looking for words of encouragement in forum Medical Questions at LymeNet Flash.


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Posted by IBelieve (Member # 6834) on :
 
I am somewhat new to this site, but not to lyme. I have been treated with IV Rocephin finishing in the middle of January this year. I kept feeling better and better until a few days ago. My energy level seems to be down and I am having jaw pain again, which I had for months in the beginning. I am on oral doxy now. Any advice? Am I just being over sensitive here?
Thanks
 
Posted by Lymetoo (Member # 743) on :
 
Hi there and welcome! Many people on IV Rocephin relapse soon after going off. Have you been taking flagyl at any point in time recently?

I would suggest calling your LLMD and ask for flagyl and a different abx. I don't think you're supposed to take flagyl with doxy.

You're not being overly sensitive by any means!

Tincup's Links for new members
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Dr. Joseph J. Burrascano's Guidelines http://www.ilads.org/burrascano_1102.htm

Rose's 15 Facts for Newcomers http://flash.lymenet.org/ubb/Forum1/HTML/011977.html

Camp A and Camp B http://flash.lymenet.org/ubb/Forum1/HTML/021395.html

Abbreviations for Lyme-speak
http://flash.lymenet.org/ubb/Forum1/HTML/020494.html

Making the most of your LLMD visit
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Western Blot explanation: http://flash.lymenet.org/ubb/Forum1/HTML/022767.html

More info: http://www.ilads.org/

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------------------
oops!
Lymetutu

 

Posted by Beverly (Member # 1271) on :
 
Hi and Welcome Ibelieve,

I agree with Lymetoo, and I don't think you are being overly sensitive either.
Here is another link by Tincup on TMJ, maybe something there will help?
http://flash.lymenet.org/ubb/Forum1/HTML/022282.html

I hope you will be feeling better soon.
 

Posted by DC (Member # 6633) on :
 
I know how ya feel. I'm having major problems with my knees. I just had 4 days of much less pain and within the last few hours the pain is comming back.

I thought I was on my way to well knees. But I know I'll get through this! Hang in there!

Psalms 55:22 "Cast thy burden upon the Lord, and He shall sustain thee He shall never suffer the righteous to be moved."

 

Posted by marblenose (Member # 6477) on :
 
IBelieve,
I send you light and healing energy. I am currently on IV Roc., I am told by others on this site who have gone before me to have faith and know the healing will come. I wish the same for you!
Blessings,
Marblenose
 
Posted by Recipegirl05 (Member # 6729) on :
 
Hi IBelieve!


Just checking on you to see how you're feeling. I meant to reply yesterday, but ran out of steam.


Anyway, I also saw your reply on the head pain thread today and wanted to encourage you a bit about the returning pain.


You said the head & nerve pain along with the jaw pain seems to be returning. I am very sorry this is happening.


I had a pain meltdown on starting my 3rd bottle of Mepron for Babesia which occurred well after I had seen great improvement with the all-consuming pain.


When symptoms start returning that you thought were long gone-----well it's disheartening to say the least. More like a a slap in the face------I know. You're left wondering---where the heck did this come from?


I hope you'll contact your doctor like the others suggested. Please don't settle for going backwards. You got better before & you can get better again.


But yes, I agree with you It's frustrating & disappointing as can be. Have a good cry if you need to.


I don't know what your doctor wants to try next, but everyone's right about the Flagyl. It's usually given with Rocephin.


Just a FYI:
Flagyl can be rough on some causing nerve pain. It penetrates the blood brain barrier and also acts against some types of fungus.


Some start with small doses and work up slowly; others like the Long-Acting Flagyl. So, as usual, it just depends on the person.


Some choose to use Tindamax in lieu of Flagyl as it's easier for some to tolerate. Just depends on what you and your doctor think is best for you.


There are many Lyme Disease ABX protocols and I'm sure you can find something that will help you get going in the right direction.


From reading on Lymenet, it seems pretty standard to follow IVs with oral ABX for as long as needed. Naturally, it depends on the patient as to how long they might need ABX. We're just all so different.


Also, eventually consider treating for Babesia (or other co-infections), at the very least, if you don't get better.


If you're still having pain while on your next treatment, be sure and tell your doctor.


Sometimes we have to tell them our pain meds are not working; otherwise, it's completely natural for them to think everything's spiffy. Sure hope you won't try to be stoic when it comes to pain.


Sometimes just taking action can be a great encourager. It is uplifting & gives us hope.


Let us know how things turn out. We're hoping things will turn around for you real soon.


Best Wishes,
Jan
 

Posted by pomegranite (Member # 3339) on :
 
Personally I'd get back on a cocktail of abx right away!

Pomegranite
 

Posted by IBelieve (Member # 6834) on :
 
Thank you everyone for your replies. I am gathering that it is more beneficial to stay on the doxycycline I am on now and not go back on Rocephin? I was only on the rocephin for 4 weeks. I go to see Dr D in Boston on March 23. I hope he can tell me more.
Thanks
 
Posted by treepatrol (Member # 4117) on :
 
Stay out of the sun and wear long sleeve shirts especially this spring no leaves on trees lets more sunlight in gotta watch that doxy
 
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