picc line pansy

We do herx and so will you. On those days all you can do is recognize the symptoms and lay low until it passes. Dr V also prescribed "perq" for the herxs. It seems to work well. My Doxy i two bags a day at 2 hours each. I take them one right after other.

We still have a very small amount of leaking. But it is very very minimal. We have also begun, or better said, regained our ability to lift weights. So all in all the pic lines cause zero discomfort. We certainly don't let them interfere with our lives.

Sorry for the rushed response. But have to go to work. Wish all lymies out there the best.

Kim

Some pain may be expected but always ask--it shouldnt become unbearable--sometimes the cath rubs the inside of the vessel; sometimes the vessel lining inflames and the brand of cath has to change ( with regular IVs I can react to one and not another type) and even if not latex allergic always use latex free supplies to cut chances of any reaction

IF you suspect problems ask for a fluroscopic xray--this way theyre not guessing where the cath is.( sometimes an ultrasound will do as well)

FYI chest caths have a slightly higher risk of infection ( and being closer to heart can quickly get very dangerous making it very important to keep on top of any changes) but seem to clot less--with all things there is a give and take of risks.

Many here on this site do a lot of alternatives either disliking or not preferring antibiotics --there are MANY with PICC etc experience at www.lymeneteurope.org--a US/international site with a lot of great solid information that is a great supplement to this site!! you may want to read/post there as well as here

good luck and keep a notebook to track infusions and symptoms and wound changes--so that when your Dr says in 2 weeks, are the headaches less--you can say exactly by how much ( last week 3 headaches a day and this week all you had was 2 in the week)

Finette

Teri

not everyone "Herxes" some can tolerate the toxins when the buggers die--some hjave better inflammatory responses than others...and some simply feel better gradually.

A herx depend upon so many things

the right drugs to kill bacteria

the bacteria releasing toxins in large amts over short periods of time

a person reacting to those toxins and having a large enough inflammatory response ( not a good thing btw)

having a high enough amount of bacteria to begin with ( more buggers more toxins)

having a die off thats punctuated ( large amounts dying at intervals)

the bottom line is IF youre feeliong better, sx are less etc etc--not if you have a herx or how bad

and not confusing a reaction to the meds or supps with a true Herx helps too

Finette

--Hot water bottle-Thanks for the idea- I'll try it on my other arm where the nurse went fishing for blood today. OUCH!

--Leaking has improved a lot-open site looks goods and isn't giving me any pain.

--I haven't had a major herx- but I have been building up my immune system and am able to take it easy-I have the summer off. I am also doing inferred sauna every day. If I try to do much- I fatigue easily and am grouchy

time for bed- wantabe

Post edited by: wantabe, at: 06/13/2008 20:22

BUT the one thing that stands out is they INSIST that NO abx be used with their treatment or it wont work--so maybe do NOT do the infra red treatments until youre ready for a break from abx??? it sounds lke the infr red may work against the abx or vice versa...until we know more why take a chance and have the PICC be for nothing??

also NASA is using infra red and far infra red to see if they can stop the bone and muscle loss in astronauts--it enhances cell and tissue GRWOTH and their studies dont show that for those of us on earth ( with gravity) that its safe--i.e. wont cause overgrowth of connective tissue or cancers...some studies HAVE shown infra red to be good to fight cancer--but theyre very specific with wavelengths as well as PRE TREATING the tumor with chemicals to make them be affected by that light

all said--Id not play with infra red stuff until this all pans out--why have long term risks??

I have also heard of the new information on infrared therapy. I'm waiting to hear more specifics and proof before making any changes in my treatment.

My LLMD highly recommends sauna time and I see a big help with some of my symptoms. Mental and muscle relaxation is a big plus. I have Raynauds and the heat is a blessing with circulation and joint pain.

IV insertion site leaking has stopped and arm pain is gone.

Herxing had me down most of the weekend and I'm slowly

trying to find that fine line of activity vs. inactivity so I can function w/out the major effects

I keep a log on lymelog.com This has been very helpful and easy to use!

have a good day,

wantabe

Suzie and I both are starting to feel a lot better.

We believe the sauna's sessions plays it's part along with the ABX and numerous natural treatments to help us get better.

I recall someone I was working with ordering a neat cover so she and her kids could shower, bathe and even swim if they were careful with their PICCs in place!! but that was 3 yrs ago--memeory fails

maybe google " waterproof covers for PICC" ???

as for saunas whatever works for YOU, and if it isnt making anything worse--DO it!!!

for me thatd be death ( Evan too) due to our dysautonomia--we cant effectively handle any heat and our sweating reflexes as well as blood vessel dilation /constriction necessary with saunas to keep you alive--no longer works right with us

as I said--everyone has their own package of body challenges---

be very careful about lymelog--I have contacted the site owner to see IF they insure privacy ( you dont want insurance, employers etc knwoing your business)and what if there is a breach...as well as where donations go, and WHO actually owns this site

IF they reply Ill let you know

right now in Lymeland we all have to be so much more vigilant due to the horrid politics out there...and careful too ...Some say "paranoid" BUT if they really ARE following you are you then still paranoid???

be well

Finette