I was doing great off anti's for a month, then my LLMD wanted me to start again because I never really finished treatment...
I started mycobutin, zith and now doxy.
I'm also doing HUmaworm..
I was on Mycobutin and zith and then added the Humaworm and my legs have been SO SO SO SO achey!!!
my thighs are killing me! my CALVES!! ouch! my kneees & muscles around them....ohhh it's been many months since I've been in this much pain...
now I added Doxy last night and it got more intense!!!
it's really hard to sleep with this pain...
should I back off or keep going? I dunno....
do you think cause I stopped anti's and then started I caught these buggers off guard?
just wanted some sympathy and understanding...feelin super crappy....
hugs to all... fawne
Posted by bettyg (Member # 6147) on :
fawne,
24/7 OUCH! i feel for you especially trying to sleep with painful legs, etc.
please give your dr. a call for help; i'd think you would have to back off some and maybe they might cut dosage, etc. but dr. must decide what to do.
best wishes, and good to see you posting again; been a long time since i've seen your name on the board. we have missed you.
hopefully, it can be easily fixed where the pain does not linger forever.
this is just for you! Posted by CD57 (Member # 11749) on :
Hey Fawne! ouch! sounds like a bartonella herx! how are you feeling mentally?
what is mycobutin?
Posted by dguy (Member # 8979) on :
Muscle and joint aches have been real bad for me too. Lessening stress has helped me. Backing off on the abx dose helps too, but I dislike that since it seems likely to delay progress.
About 100 mg of turmeric daily can help with joint pain. Careful though as too much turmeric may reduce your immune response, and let more bugs survive. Some capsules are sized at 600 mg, which is too much IMO.
Posted by DaveNJ (Member # 17362) on :
hey folks,
please find a gym with a sauna....it will give you relief. it is making my herxes managable...
been on treatment for almost 6 weeks and just started suana last week and it makes a difference. certianly i sleep better. hot baths help but not as much as the sauna.
Hang in there.
Dave
Posted by DaveNJ (Member # 17362) on :
ps....don't sit around no matter what ...walk every other day if you if you can.
in 6 weeks i went from a slow shuttle to a brisk 1 mile....maybe longer by next week....and yes i ache but it goes away during the wak...bizarre i know
Dave
Posted by KauaiGoddess (Member # 11782) on :
Aloha~
Thank you all for the replies!
I am feeling a bit better today, as far as pain goes- it seems to really hit me at night after my anti's....
BETTYG-thank you for your kind words- yeah I haven't been around too much lately....was feeling so good off anti's I was out and about.... ...thanks for the HUGS! I LOVE HUGS!!!
hugs~ Fawne
Posted by KauaiGoddess (Member # 11782) on :
CD57- yea seems like bart because it's both legs! both thighs or both knees and the CALVES! my brain is defiantly in a twist also... lots of ANGER!!!
a lot is liver anger I feel-- I was beating my bead with my pillow last night-never done that before- but I had to release- and that's how it came out- grrr.... I am combative and argumentative--anxious too..
Mycobutin is related to Rifampin- my insurance somehow is covering it!!!! supposed to hit bart...
I looked at my symptom log and this is about 4 weeks into starting the mycobutin and about 3 for zith....so maybe it's hitting their cycle...??
thanks for your reply!
smiles and hugs!
how are you doing?
fawne
Posted by KauaiGoddess (Member # 11782) on :
dguy-
yeah know what you mean about backing off-- sometimes we have to for the sake of our liver-- I am stubborn about that though...
thanks for your sympathy~
hugs~ Fawne
Posted by KauaiGoddess (Member # 11782) on :
Dave NJ-
thanks for the sauna recommendation-
I actually own one- It does help! i love it...
the time before last I took a TOO hot of a bath and it gave me the HEADACHE from HELL!!!! it sucked so I've been reluctant to get in my nightly baths...
I absolutely agree with you about the exercise! my pain feels better if I MOVE!! this morning I jumped on my rebounder- and boy did I feel great!
TO get that oxygen flowing through our bodies is oh so important even if we FEEL like we can't move! it's a mind over matter thing!
thanks for your input!
hugs! Fawne
Posted by Alv (Member # 15192) on :
YOUR treatment sound like hitting bart.
I would not stop the treatment.Is better to hit this bugs fast and with highload of killers for a while.
Posted by CD57 (Member # 11749) on :
mycobutin, will have to ask about it. is it orange like rifampin? SOMETHING is going on. keep on keepin' on!
Posted by bettyg (Member # 6147) on :
dawne, here's some more!! maxed them out! Posted by lymie tony z (Member # 5130) on :
Yes Fawne,
What you have suggested is very likely to have ocurred. As in some studies with AIDS and
utilization of a start stop approach in treatment regimens...
When what you are treating may have hit a plateu, (cessation) of the regimen for a two week
period, may indeed keep the ketes from mutating and whenever you returned two weeks later a
larger killoff may have indeed caused your pains or level of herx (synominous).
Begining at this time may also be a way your llmd is testing your cycle of regeneration....
durring particular, successive days in the month.
I don't think the artemisinin is required at this point howeverbecause
that is generally used for babesia as it is more in tune at fighting and killing parasites....
babesial parasites...
While it has been said that this parasite should be erradicated prior to trying to treat Bb or other co-infections.
The regimen you seem to be on(with the exception of the zith and artemisinin)could be the wrong approach.
Doxy is rarely, if ever used, to erradicate parasites...I beieve...
The weather down here in "Sunny Florida" may have had something to do with your pain as
well. As cold fronts are moving in all over the globe and lower pressure may have the chetes
laughing and dancing in the streets that are your tendons, muscles...etc....
and then being WHAKED immediately by the meds you're on at present,
in turn releaseing neuro-toxins and making you ache.
Perhaps the same jetstream(coldfront and downsweep of Canadiean air may well be the ONLY reason for your pains...
Depending on how long you've been infected and have employed this llmd. He/she may be finding
a "Basis" or schedule with which to have the best possible shot at killing thus bringing down
your particular species and load of harmful pathogens.
I'm a bit tired and disalusioned this evening so I may have skipped something VERY OBVIOUS,
LIKE a possible contraindicated combination of meds you're now employing....
I think I would stop right now check with the llmd or at least the pharmacist in the morning.
There are of course some statins can cause these symptoms as well....
Gonna go for now....I'll check with you tomorrow.
You may try a icebath for calming down the nerves being affected tonight just so you can sleep....I know how distressing those "DEEP NERVE" pains can become......!!!
zman
Posted by Peedie (Member # 15355) on :
Hey Fawne
I'm sorry you are Herx'g so bad. "do you think cause I stopped anti's and then started I caught these buggers off guard?" Yes - I think so! I hope so! Have you read the book "Cure Unknown"? Here's some ideas: Buy the book - skip to chapter 44 "How I Cured My Own Lyme Disease" and read this one first. This will help the twisted mind. Start taking Sam-e. This will help the Rage. A little Ambien and counting pink cows. This will help you sleep. May you feel better soon. TC Peedie
Posted by DaveNJ (Member # 17362) on :
Hey Fawne,
for the sake of levity can we at least get a weather report for kaui? i'm in NJ and damn it was 40 this morning.
Maybe i need a treadmill...gonna be chilly during my walk.
Dave
Posted by KauaiGoddess (Member # 11782) on :
ALV- thanks for the input!
CD57-yea the pills are red/orange like Rifampin....
BETTYG-thanks for the HUGS!!!!
LYME tony z-
thanks for your detailed reply! you lost me though...why would doxy, mycobutin and zith be wrong to treat BART and some lyme too... ???
The Humaworm (parasite cleanse)I have found brings out my bart....it really responds well to their combo of herbs.... even though it's called a parasite cleanse- a lot of the herbs in it are anti-bacterial etc...never the less- I think that's what you were talking about the Art? there is wormwood in it...but I am not taking art alone at this time.....
my LLMD is currently trying to get the bart....
were you suggesting that it might be babs? confused....??
I got bit in June of 2004...got sick in end of 2005...and began treating in June of 2007....
the weather note is very true...we've had rain and stormy weather for about a week now...it's been nice- but also, true, it's when I got WORSE!!
thanks again!
lots of hugS! Fawne
Posted by KauaiGoddess (Member # 11782) on :
PEEDIE- thank you too! That book is good? my friend said it was depressing..
I assumed b/c of the ONGOING nature of this disease that was discussed, and reminds us of the struggle.... maybe i'll have to check it out though...
DAVE NJ- well today is SUNNY AS CAN BE!!!! high tradewinds.. with white clouds scattered across the sky! it's probably 80 degrees.
I actually want the rain and clouds cause I can't be in the sun with DOXY
maybe take up yoga! you can do it in your home...it's great! or a small trampoline works wonders!!!
smiles and hugs!
thanks again! Fawne
Posted by KauaiGoddess (Member # 11782) on :
Aloha-
I forgot- now last night after my bath (I gave in and took one, even though it gave me a slight headache:()...it hurt to wear my shirt!!!!
to touch me back- ouch! just the fabric rubbing my skin if I twisted....ooooohhh...
ALSO, my spine feels like there is a ROD in it....???
this has persisted still today- with the headache..
I actually got some sleep last night...my achy legs are lots better...
now the back stuff... muha...
Thank you all for your support and understanding!! it helps a great deal!!!
hugs! Fawne
Posted by Peedie (Member # 15355) on :
Yes - the book is very good. It does deal with the very serious reality of Lyme disease for people who went undiagnosed for many years and the severly effected. On a scale of one to ten, she talks a good deal about the tens. The bottom rung of the ladder. She wants to, and has exposed Lyme for all it's intensity and complications that make all our lives HELL. If you would like a really good book to uplift your spirits - the one "Marley and Me" is truly wonderful. Very well writen. For some reason the whole time I read the book I heard the warm story telling voice that was always the narration of Walt Disney on Sunday nights as a kid growing up. Cure Unknown documents many years of Lyme history and follows the politicsw and life stories of people - like you and I and the others here - the struggle to get diagnosed, treated and get well. It is more education...not entertaining. So you choose - which book is best for you now. Or buy the book and read chapter 44 for now - the rest later. TC and Best Wishes, Peedie
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...thanks for the HUGS! I LOVE HUGS!!!