Re: 28 days not enough

May 1, 2006

Thank you, ladies, again for all your help and encouragement! I can't tell you

what a relief it is to have the support of a knowledgable community.

I just received word from my doctor that my son has tested positive for strep

throat. It is possible that his fever is entirely from strep; it is possible

that Lyme is involved, too. I am allowing myself to be optimistic that the

fever is just from strep, but I still want to do the minimum effective measure

to ensure he doesn't get Lyme.

We will have him tested for Lyme in ten days- my doctor is confident that it

will show up by then, if he has it. He is going to have 28 days no matter what,

because that's what I want. I will read up on the guidelines you sent, Colleen,

and if 6 weeks is the standard for all tick bites, then I'll just go for it. It

occurred to me last night that my children will all grow up thinking it's normal

to be sprayed down with tick repellant, undressed and checked from head-to-toe

each time they enter the house after outdoor play. That was NOT the carefree way

I grew up! But what choice do I have but that level of vigilance? My county is

SWARMING with ticks!

You all have my heartfelt sympathy for the troubles you face with this disease.

I would hate to have to drive all over just for decent treatment. I pray for a

cure (and smarter doctors!) for your sakes.

Wishing you the best, and thank you-

Trish

________________________________________________________________________

Try Juno Platinum for Free! Then, only $9.95/month!

Unlimited Internet Access with 1GB of Email Storage.

Visit http://www.juno.com/value to sign up today!

May 1, 2006

Dr. has said that strep " feeds " on the Lyme

bacteria so strep is very common in Lyme kids. I have

two girls with Lyme and they both have had recurrent

strep throat.

--- " globe_amaranth@... "

<globe_amaranth@...> wrote:

> Thank you, ladies, again for all your help and

> encouragement! I can't tell you what a relief it is

> to have the support of a knowledgable community.

>

> I just received word from my doctor that my son has

> tested positive for strep throat. It is possible

> that his fever is entirely from strep; it is

> possible that Lyme is involved, too. I am allowing

> myself to be optimistic that the fever is just from

> strep, but I still want to do the minimum effective

> measure to ensure he doesn't get Lyme.

>

> We will have him tested for Lyme in ten days- my

> doctor is confident that it will show up by then, if

> he has it. He is going to have 28 days no matter

> what, because that's what I want. I will read up on

> the guidelines you sent, Colleen, and if 6 weeks is

> the standard for all tick bites, then I'll just go

> for it. It occurred to me last night that my

> children will all grow up thinking it's normal to be

> sprayed down with tick repellant, undressed and

> checked from head-to-toe each time they enter the

> house after outdoor play. That was NOT the carefree

> way I grew up! But what choice do I have but that

> level of vigilance? My county is SWARMING with

> ticks!

>

> You all have my heartfelt sympathy for the troubles

> you face with this disease. I would hate to have to

> drive all over just for decent treatment. I pray

> for a cure (and smarter doctors!) for your sakes.

>

> Wishing you the best, and thank you-

> Trish

>

________________________________________________________________________

> Try Juno Platinum for Free! Then, only $9.95/month!

> Unlimited Internet Access with 1GB of Email Storage.

> Visit http://www.juno.com/value to sign up today!

>

> [Non-text portions of this message have been

> removed]

>

__________________________________________________

May 1, 2006

Hi Barbara,

You wrote that strep feeds on the Lyme. OH NO!!!! But thank you- it's good to

know. I hope your daughters are alright? I guess that is too big a question,

but I hope they are alright!

Trish

________________________________________________________________________

Try Juno Platinum for Free! Then, only $9.95/month!

Unlimited Internet Access with 1GB of Email Storage.

Visit http://www.juno.com/value to sign up today!

May 2, 2006

Finette:

I really resent the insurance company who has clerks, and non medical people

making decisions about what treatment our children can and can't have. I

had at one time my oldest who was four at the time have an extra tooth in the

soft palate of her mouth with a cyst on it. I argued for six months with Blue

Cross about whether or not it was a dental procedure. (Anytime you go into

the soft palate it changes from a dental procedure to a medical procedure and

this I knew.) I had clerks telling me that my four year old who had never

been put to sleep before saying that it could be done in a dental office

because it was a dental procedure. After 6 months of argument, Blue Cross

paying,

then rescending payment, I must admit I got a little on the testy side and

according to the clerk " threatened " them.

I asked for a supervisor for the third time and finally was told that my

threats would do no good. I politely told the supervisor that I had not

threatened the clerk, I PROMISED her that not only would they hear from my

attorney

but also the state insurance commissioner if the claim was not settled within

5 working days. The ball was now in there court and I had all my calls

documented and started telling her my six months of documentation consisted of

using names, dates, and times.

Maybe if you contact you state's insurance commissioner with your concerns

you will get some action. It sure worked for me.

Jeanette

May 2, 2006

Hi

Been dealing with the nightmare of getting Evan his IM Bicillin renewed...Dr

said yes, Oxford supposedly said yes but I have to use their drug provider, then

the drug provider tells me Oxford NOT okaying...as its an injectable and

therefore a medical benefit...yet the supplier is a drug supplier and is only

allowed to charge thru pharmacy benefits ( which I have BUT it does NOT cover

injectables)...UGH

so far Im paying for it myself ( $500 for 10 shots) and I may have to SUE for

reimbursement!!! Let alone placate the Drs office who made over a dozen wasted

phone calls and another handful faxes in one day all to waste. (not to mention

the last 10-12 days!!!! of calls etc...I alone logged over 40 hrs total calls)

SIGH

As for Trish:

Please seek advice from a good LLMD...meanwhile having your baby on meds will

give you time to get into one. As for testing...once youre on meds, it may

affect the outcome ( as in give false positives and/or negatives) as the CDC

states ( and many Drs ignore: the testing is only for " surveillance " and is NOT

to be used for diagnosis...that can only be done thru exam/clinical evidence.)

Im not saying to not have testing, just dont look to it for absolute answers.IF

you do go ahead with tests, dont stop at ELISA but make sure the western blots

for both IGG and IGM are done, and tests as well as for ALL possible

co-infections: at this time includes HGE, HME (two types Ehrlichia);Babesia;

Bartonella; Mycoplasma. Some or all may need PCR's or other tests.

Also some immune systems simply dont react to early or milder infections and

come up falsely negative.

As for " Strep feeding on Lyme " ( or vice versa)...I dont think this is meant to

be literal....I think that the immune system may be overwhelmed and may even be

altered when fighting Lyme and other tick bacteria and then cant handle

additional infections like strep. Many repeat infections may also point to an

inborn tendency to being vulnerable...also making it a bit more important for

more aggressive Lyme treatment.( and perhaps to keep vigilant about other

infections) Plus the necessary antibitotics changes the balance in the body so

while necessary, we have to be aware of collateral affects.

Keep in mind that there are many protocols ( types of meds and dose/durations )

and so far there is not one single plan that works for all of us...again this

means a very experienced LLMD.

As for peds...they are very rare...Id simply call family practice Drs ( they are

also trained for peds_)and feel them out about their Lyme experience and

philosophy....and get into touch with the local Lyme support groups...theyll be

able to give you a list od LLMDs as well as ones to avoid (even more

important).Be wary of Infectious Disease Drs...some are quite anit-Lyme. and FYI

in my experience CHOP is not particularly Lyme friendly---the neuro dept

insisted my kid was " depressed " not ill despite tests to contrary...did not even

know about tick borne Bartonella or Myco...the GI dept thought " stress " gave him

a pre-ulcer...again despite tests to contrary...and the list goes on.

good luck and dont panic...just keep track of his behavior and symptoms...it

will become a valuable documentation of whether he continues with symptoms and

if and how he responds to meds!..Its harder to argue with a daily account

instead of " Uh Dr I think his crankiness is worse " ..

Finette

May 2, 2006

Hi Trish,

I just wanted to ditto a lot of what Finette says below about being cautious in

relying on the test results you get for your son regarding the Lyme, especially

if he's been on antibiotics prior to being tested. My son tested negative twice

for Lyme and he'd had some limited antibiotics before being tested also. When

he did test positive it was after being off antibiotics for a month and when Dr.

sent his bloodwork to Igenex in California. I'd like to add to Finette's

suggestions below that you seriously consider having him tested by Igenex.

Also, regarding the strep issue... I have been wondering about the connection

myself for a while because my son had a 'vague, positive strep culture' when he

first started having symptoms after his tick bite. But his reaction to

antibiotics did not fit what I'd seen about strep in the past -- ie his symptoms

didn't go away as quickly once on antibiotics like they did previous times with

strep, and he ended up having a terrible Herxheimer reaction which I wasn't

familiar with at the time. Then I met so many other people that said their

children tested positive for strep initially when they ended up having Lyme

disease that I had begun to wonder what the connection was. I don't really have

the answers but in my son's case I don't think he ever really had a strep

infection but I think the initial Lyme infection caused the test to come up with

the vague positive strep result. Just a thought...

Also, even though we knew when my son had his tick bite and his symptoms started

within a couple of weeks from the bite, he was significantly undertreated with

antibiotics initially which drove the infection deeper into his CNS and his

brain. I'm confident he will recover fully at some point but we are still

fighting the infection after 14 months on aggressive antibiotics. If he had

been treated properly initially I believe this would be behind us by now. My

point for you Trish, is not to panic, but to REALLY follow your gut and be sure

to talk to the experts so that you can feel confident that your son has proper

treatment now. Dr. has told me that stopping antibiotics too early means

that when the infection reappears it will be much tougher to eradicate.

Best of luck to you and your son...

Patty in MD