Re: endocrinologists and plateaus and normal inattention/behavior, longterm abx

[Guest guest]

Hi all

back from Ohio...the graduation festivities were wonderful as was hearing my

daughter's name followed by a LONG list of honors...but the trip was a

nightmare...10 hr drive going with my dysauto acting up...3 days of hell with my

almost ex and his meddling selfish nasty sister ( details upon request via

private email--finrussak@...) and lets just say this week I need to find a

strong and vicious lawyer...then 12 hrs back with even more severe symptoms and

a ride filled with verbal and emotional abuse...but I am back and I made it and

I even needed the rental wheelchair less than expected!!! yay~~!!!

[anyone with a recommendation for a good/hard family law attorney able tp

practice in NJ would be very appreciated!!!!)

Plateaus: I have had many many of these...for me they always mean a change of

meds...either different meds or combos OR different dosages or even different

patterns..like I was previously on mino and tinidazole and hit a wall...no

better and no worse but still miserable so then I did Ceftin--hives after 2

weeks and switched to Suprax suspension...worked up to 300 mg /day all at

once...hit another wall after 2-3 months...so now I am on Suprax for 4 days then

Biaxin for another 4 days then 1-3 days no meds ( my choice...depending upon sx

etc)...and back again to Suprax....so far its about 2 months and Ive herxed a

few times, felt awful a few more times due to meds ( its a different

miserable...after almost 11 years of on/off meds [including a fairly even 4 year

remission period] I can sorta tell---sometimes LOL)...and now Im thinking I may

be hitting another wall...I am better but " not enough " ...this Thur I will be

pleading with my LLMD for a change in pattern or drug...we'll see...Im sure

he'll say with the stress Ive just endured to wait it out a bit longer...

endocrine: its always a good idea to have an " ologist " consult during the long

haul of more lengthy Lyme treatments...the disease as well as the drugs can

really mess up every system ( cardiac, GI, endocrine/glands, etc etc)...and to

be safe as well as to monitor the changes its wise to have a team approach. Plus

there is always the possibility of a coincidental thing going on...like my

friend who happened to develop thyroid issues 4 years into Lyme

treatment...perhaps due to a family tendency, perhaps autoimmune due to Lyme

etc...who knows...and there are subtle changes in bloods and by exam that a

specialist will more readily pick up on...after all they see these things all

the time...how often for example will a FP see a minor yet significant change in

thyroid function blood tests compared to the guys who see it all the time??

and start asking for COPIES of all your kids' tests...in your own file...so you

can see patterns...I caught that Evan's IGG had a steadily dropping pattern that

meant more than the actual individual numbers!!Plus theyll be handy for any

future consult...no running around trying to get all the offices to fwd/fax to

the new guys!

as for who to go to...well let me just say that I myself have been looking for

Endos in the NY/NJ/PA areas for over 12 years now...avoid UMDNJ/ Wood

Hospital...the head of the dept is friends with the notorious Dr S of the " there

is no chronic Lyme " camp/ avoid CHOP ( see below)...perhaps ask the LLMD offices

even if you havent gotten into them yet...they keep a list of Lyme friendly

specialists and even who to avoid...I myself added to that " avoid " list at at

least 3 LLMD's as in a 6 yr period I had seen nearly 75 special;ists of various

flavors..and the info was shared....nice to know I may have helped but

c'mon...it wwas darned annoying

the smaller hospitals staff are even worse....it seems the big bucks are in

diabetes and thyroid- better known as the " Synthroid-Glucophage Money Tree "

around here..easy dx and tx options...10-15 min visit...high fees...etc UGH

A group out of town Hospital have been less Lyme negative altho

admittedly undereducated...at least willing to speak with my LLMD and entertain

out of the box issues...Im not whole heartedly recommending them except to say,

Ive found no one else = Endocrine Medical Associates, town, NJ...call and

ask to be placed with a Lyme Knowledgeable doctor...

make sure they deal with teens...it is a notoriously difficult endo age with

wildly fluctuating levels of various hormones ...and it takes a very practiced

eye to really know whats " normal "

you can always do what I do...I sit with my insurance lists of Drs and call and

ask to speak with a NURSE, and if after a few questions ( how many Lyme

patients, what are their feeling about chronic Lyme,will they consult and have a

team approach with my curren LLMD [i say 'the physician who is treating my

chronic Lyme'] if there are too many doubts I ask if the Dr will give me 5 min

on the phone so as to not waste either of our times in a useless appt...often

Ill get a call within 1-2 days and ask the Dr the same stuff...by the way he

answers I can tell if its worth it...THEN if I havent found anyone, I call the

hospitals' referral systems and call those offices they give me...

I have gone to far too many appts where I walked out more upset and hopeless

prior to this method I adopted about 3 yrs ago...it wasnt worth my getting more

ill etc...and it does save time...even iif I refuse to make appts simply due to

the impatience of the Dr and/or staff...after all I am a medically fragile

multisystem multisymptom patient and my case needs patience and knowledge of an

experienced diagnostician...and a willingness to believe my dx...the dysauto

stuff is even harder than the Lyme dx!..not a fool who wants to see as many

patients in a day as possible to pay his golfing country club dues...!{ or

someone who thinks he has all the answers]

CHOP=Childrens Hospital Of Pennsylvania

If youre child has a dx of Lyme or even if you suspect it, dont allow them to be

labeled as " well, all 11 yr olds have periods of tummy aches, inattention,

headaches, behavioral outbursts " etc...YOU as the parent know whats normal and

not...and as they approach the magic " I hate you " stage of 11-13 yrs old...pay

attention to see a pattern...if your daughter often slams her bedroom door at

the mere mention of cleaning her room rather than only when she is complaining

of aches/pains or after 2-3 weeks of being off meds etc...then thats important!!

keeping a log/diary has been invaluable to me and my son's conditions...plus as

Ive said before, at the Drs its taken more seriously when you can say

definitively that last week there were twice as many times couldnt read his

book...rather than " welll, Dr I think he is having more trouble...maybe a

little " or even quantify the numbers of headaches etc...dont make it too abvious

so the child isnt self conscious or accused of hypochondria...Evan is 16 and I

note when he looks pale or when his feet trun blue or when he appears at the

stairwell asking for when he can take more TYlenol and I say " head again? " and

he goes " uh huh " ...so when he goes back to his room, I write it down!!!

Finally about long term abx...I am NOT a fan of big Pharma...and I try to use

non drug methods when I can...BUT the bacteria that are in ticks is serious and

more dangerous to leave be than the drugs...there are MANY cases of long term

drug use when done carefully have NO really bad or permanent effects:

-antibiotics for YEARS for childhood cystitis/kidney issues

-antibiotics for months for ACNE

-antibitoics for years for TB

etc etc etc...remind the Drs who try to scare you from more abx.

and I respect the risks of all these drugs...I often use the term

" chemotherapy " ...even tho its not cancer...after all it IS putting chemicals

into the body to kill [bacterial/parasite] cells, and hopefully do little if any

damage to healthy tissue. there are side effects and There will be collateral

damage but again hopefully the benefits will outweigh the risks.

the dangers of undertreating are in my opinion far more dangerous...all those

Drs with a 4 week limit are fooling themselves or reading the wrong journals!!

forgive the long post and the many different posts I answered at once but I must

get back to unpacking...my health aide never showed up today...and my daughter

is running around with a mere 3 days before having to fly to AZ to secure grad

school housing then off to Fla to a wildlife refuge summer adventure.

Finette

[Guest guest]

Finette,

COngratulations on your daughter's graduation. I appreciate the suggestions for

an endo & share your feelings about CHOP. They were absolutely certain my

daughter didn't have Lyme, with no testing at all. They also knew she didn't

have narcolepsy, but that her problems were psychiatric. Again without the

diagnostic tests (done late elsewhere which surprisingly confirmed narcolepsy).

They thought a friend's son had ADHD & needed discipline when he was having

hundreds of seizures due to mitochondrial disease.

But everyone around here knows they are the best place to go .

Take care,

Sue

PS I take it back about her progress- her temp is 91.8 this am- no wonder she

couldn't wake up.