Re: Intro... with questions, of course!

[Guest guest]

Take the doxy and find a LLMD

[ ] Intro... with questions, of course!

Hi, I'm Sharon. I'm a 43 year old wife and mom of 2 young daughters, and I'm

always in a hurry and constantly interrupted, so I apppologize in advance if

this email is fragmented. I recently had a bout of painful bilateral eye

inflammation with extreme light sensitivity (panuveitis). The first

opthamologist referred me for an autoimmune work-up. I went to s Hopkins

occular immunology department. JH did a battery of tests and treated the eye

inflammation successfully with steriod drops. All the tests were inconclusive,

and because of a history of joint pain, the doc then ordered a western blot.

Well, the lab mistakenly ran the preliminary test instead, the results were

apparently positive, and the lab recommended a western blot (grr). The doc then

said, let's just go ahead and treat you for lyme. Today I filled the rx: 100mg

Doxycycline 3x/day for 30 days. I haven't taken it yet, because I read on the

net that joint pain and eye involvement usually signal the later stages of the

disease and that IV antibiotics are then recommended. So I wonder, should I go

ahead and take the oral doxy and see how it goes, or wait and demand a Western

Blot?

Thanks experts!

Sharon

[Guest guest]

Hi Sharon,

Time is of the essence. Get on the Doxycyline right away. How long have you

had symptoms like joint pain? That may be a clue as to how long you've been

infected. You need to find a Lyme Literate MD with lots of experience with Lyme

& co-infections beyond the acute phase. If you tell us where you live (state)

people will be able to give you names PRIVATELY through personal email.

If the MD prescribing the Doxycycline follows CDC/Infectious Disease Society

Guidelines (which most MDs feel compelled to follow) --you will only get one

month, at most two, of antibiotics. That is not nearly enough treatment if

you've been infected for more than a few months.

You may feel worse at some point during the month on Doxy because when the

spirochetes that cause Lyme die-off they release toxins. It's called the

herxheimer reaction. This is one of those disease where you feel worse before

you feel better. Make sure you take a strong probiotic to replenish the natural

bacteria in the gut. Don't take it at the same time as the antibiotics. I can

recommend Ultimate Flora Critical Care 50 billion (must be refrigerated). I

take 1 caps at bedtime and I " ve had no gastro-intestinal problems despite the

fact I've been on massive doses of oral antibiotics for 6 months (I went

undiagnosed for 5 1/2 yrs).

You will find this group a great resource. If you want to, compare the

treatment guidelines between the CDC/IDSA with those developed of ILADS (the

International Lyme and Associated Disease Society) available online. Also watch

Under Our Skin a new documentary short-listed for an . The book Cure

Unknown by Pamela Weintraub, a former NY Times science journalist whose whole

family became infected (probably multiple times) and went undiagnosed for years.

Unfortunately the diagnosis & treatment of Lyme & other tick-borne infections

has stirred an ongoing controversy among treating physicians (LLMD) & their

patients, scientists, & grant-funded researchers and insurance companies.

You will find a lot of support from this group.

Welcome!

Kim in Western Mass.

[ ] Intro... with questions, of course!

Hi, I'm Sharon. I'm a 43 year old wife and mom of 2 young daughters, and I'm

always in a hurry and constantly interrupted, so I apppologize in advance if

this email is fragmented. I recently had a bout of painful bilateral eye

inflammation with extreme light sensitivity (panuveitis). The first

opthamologist referred me for an autoimmune work-up. I went to s Hopkins

occular immunology department. JH did a battery of tests and treated the eye

inflammation successfully with steriod drops. All the tests were inconclusive,

and because of a history of joint pain, the doc then ordered a western blot.

Well, the lab mistakenly ran the preliminary test instead, the results were

apparently positive, and the lab recommended a western blot (grr). The doc then

said, let's just go ahead and treat you for lyme. Today I filled the rx: 100mg

Doxycycline 3x/day for 30 days. I haven't taken it yet, because I read on the

net that joint pain and eye involvement usually sig nal the later stages of the

disease and that IV antibiotics are then recommended. So I wonder, should I go

ahead and take the oral doxy and see how it goes, or wait and demand a Western

Blot?

Thanks experts!

Sharon

=

[Guest guest]

Hi Sharon,

I went through same problem(eye problems), I went ahead with Doxycylin for 2

months i was prescribed with 100 mg 3x a day for 2 months.Dont wait...becuase

the sooner you get your ABX, the better. My eyes got better. I have severe

hexing after a month of taking it, i thought I was dying but I combine it with

sweating excercise for 3 hours to kill the Lyme, I felt better after. So I went

to see my LLMD Doc to get an opinion for IV but when they did my brain MRI, it

was negative for Lyme, they have ways to find Lyme in MRI of Brain, it was

oredered due to Neuropathy both hands. My Dr state that I was properly teated

and no need for IV and I agree sometimes, but I know I have bad days and good

days. They said as long as Im not getting worst, I should be alright. It takes

time for the ????I cant remember the terms?

Lonera

From: sayheysharon <heysharon@...>

Subject: [ ] Intro... with questions, of course!

Date: Tuesday, January 12, 2010, 6:48 PM

 

Hi, I'm Sharon. I'm a 43 year old wife and mom of 2 young daughters, and I'm

always in a hurry and constantly interrupted, so I apppologize in advance if

this email is fragmented. I recently had a bout of painful bilateral eye

inflammation with extreme light sensitivity (panuveitis) . The first

opthamologist referred me for an autoimmune work-up. I went to s Hopkins

occular immunology department. JH did a battery of tests and treated the eye

inflammation successfully with steriod drops. All the tests were inconclusive,

and because of a history of joint pain, the doc then ordered a western blot.

Well, the lab mistakenly ran the preliminary test instead, the results were

apparently positive, and the lab recommended a western blot (grr). The doc then

said, let's just go ahead and treat you for lyme. Today I filled the rx: 100mg

Doxycycline 3x/day for 30 days. I haven't taken it yet, because I read on the

net that joint pain and eye involvement usually

signal the later stages of the disease and that IV antibiotics are then

recommended. So I wonder, should I go ahead and take the oral doxy and see how

it goes, or wait and demand a Western Blot?

Thanks experts!

Sharon

[Guest guest]

Hi, Sharon. Welcome to the list.

Go with the doxy. It won't hurt you to take it (assuming you're taking the usual

precautions, like lots of probiotics); and the reaction you get will help

confirm your diagnosis and show that antibiotics will work for you. However, the

odds that it will actually cure you at this late stage of the disease is slim to

none.

There is no broad consensus among Lyme-literate doctors (which you are most

assuredly NOT seeing at s Hopkins, btw) as to whether IV or oral antibiotics

work better. I have very late-state Lyme (it took 23 years to get a diagnosis),

and have been entirely treated with orals to the point of significant remission.

There appears to be some regional preference -- in the east, doctors go straight

to IVs; in the west, they tend to try a year or two of oral antibiotics before

putting put the ones that don't get good recoveries on IV drugs. Nobody's

compared the outcomes, but their clinical sense is that it all works out about

the same.

You definitely want the Western Blot, because Lyme is a very political disease

(really, you have no idea); and having a clear CDC positive on a Western Blot

will make some of the rest of the fight you're in for easier. If it comes up

negative (not likely if you've already had a positive ELISA, which is test

notorious for false negatives), don't assume you're Lyme-free: the Western Blot

is also a crippled test that omits the two bands that are most indicative of

Lyme. There are labs that offer a Western Blot that includes those bands --

which are definitive if positive -- but doctors don't offer them because

insurers won't cover them. (Why? It's political.)

See if you can also get your doctors to test for Lyme's known co-infections:

bartonella, babesia, ehrlichia, and mycoplasma. The docs at s Hopkins, in

particular, generally do know about these; and failing to treat them will

complicate and probably thwart your efforts to shake off the Lyme.

The bad news is that you're almost certainly going to be in this for a lot

longer than 30 days -- 3 to 5 years is more like it. And insurance will not

cover anything beyond the Western Blot, your month of doxy, and a month of IV

Rocephin. After that, you will be on your own. The good news is: you're here,

which is going to make this a little easier.

Also: do what you can to stay the hell away from steroids. They're strongly

contraindicated in Lyme.

Sara

On Jan 12, 2010, at 3:48 42PM, sayheysharon wrote:

> Hi, I'm Sharon. I'm a 43 year old wife and mom of 2 young daughters, and I'm

always in a hurry and constantly interrupted, so I apppologize in advance if

this email is fragmented. I recently had a bout of painful bilateral eye

inflammation with extreme light sensitivity (panuveitis). The first

opthamologist referred me for an autoimmune work-up. I went to s Hopkins

occular immunology department. JH did a battery of tests and treated the eye

inflammation successfully with steriod drops. All the tests were inconclusive,

and because of a history of joint pain, the doc then ordered a western blot.

Well, the lab mistakenly ran the preliminary test instead, the results were

apparently positive, and the lab recommended a western blot (grr). The doc then

said, let's just go ahead and treat you for lyme. Today I filled the rx: 100mg

Doxycycline 3x/day for 30 days. I haven't taken it yet, because I read on the

net that joint pain and eye involvement usually signal the later stages of the

disease and that IV antibiotics are then recommended. So I wonder, should I go

ahead and take the oral doxy and see how it goes, or wait and demand a Western

Blot?

>

> Thanks experts!

>

> Sharon

>

>

>

> ------------------------------------

>

> Lyme Disease News continually updated from thousands of sources around the

> net: http://www.topix.net/health/lyme-disease

>

> MedWorm: The latest items on: Lyme Disease

> http://tinyurl.com/23dgy8

>

[Guest guest]

It takes time for the residual to go away, that means I should be patient.

Lonera

From: sayheysharon <heysharonhotmail (DOT) com>

Subject: [ ] Intro... with questions, of course!

@group s.com

Date: Tuesday, January 12, 2010, 6:48 PM

 

Hi, I'm Sharon. I'm a 43 year old wife and mom of 2 young daughters, and I'm

always in a hurry and constantly interrupted, so I apppologize in advance if

this email is fragmented. I recently had a bout of painful bilateral eye

inflammation with extreme light sensitivity (panuveitis) . The first

opthamologist referred me for an autoimmune work-up. I went to s Hopkins

occular immunology department. JH did a battery of tests and treated the eye

inflammation successfully with steriod drops. All the tests were inconclusive,

and because of a history of joint pain, the doc then ordered a western blot.

Well, the lab mistakenly ran the preliminary test instead, the results were

apparently positive, and the lab recommended a western blot (grr). The doc then

said, let's just go ahead and treat you for lyme. Today I filled the rx: 100mg

Doxycycline 3x/day for 30 days. I haven't taken it yet, because I read on the

net that joint pain and eye involvement usually

signal the later stages of the disease and that IV antibiotics are then

recommended. So I wonder, should I go ahead and take the oral doxy and see how

it goes, or wait and demand a Western Blot?

Thanks experts!

Sharon

[Guest guest]

Hi Sharon -

I would def start the doxy right away. I'm kind of amazed that a JH doc

prescribed 300mg a day - usually they'll say 100mg (or less) for 30 days

and then wait and see. But like others have said, you'll need to find a

Lyme Literate Doctor (LLMD). They are rather scarce and practice in a

bit of secrecy since they usually must prescribe meds far outside the

accepted norm of their governing associations. If you post your

location someone will be able to send you (off list) a name hopefully.

One good way to indicate if your symptoms are caused by Lyme is to see

if you have a Herx reaction after starting the Doxy. A herx is

indicated by a sudden worsening of your symptoms (and in my case a bunch

of new lyme symptoms) as the anti-biotics start to kill the bacteria.

My herx's have usually only lasted about a week, but everybody is

different. After the herx you will gradually start to feel better.

Testing is good - if only to get a positive to show the insurance

companies so they'll cover your lyme treatments. I'm no expert on

testing, but I think it's generally understood that lyme tests are

notoriously inaccurate - meaning that a negative doesn't necessarily

mean you don't have lyme.

Hope you feel better soon,

Don

sayheysharon wrote:

> Hi, I'm Sharon. I'm a 43 year old wife and mom of 2 young daughters, and I'm

always in a hurry and constantly interrupted, so I apppologize in advance if

this email is fragmented. I recently had a bout of painful bilateral eye

inflammation with extreme light sensitivity (panuveitis). The first

opthamologist referred me for an autoimmune work-up. I went to s Hopkins

occular immunology department. JH did a battery of tests and treated the eye

inflammation successfully with steriod drops. All the tests were inconclusive,

and because of a history of joint pain, the doc then ordered a western blot.

Well, the lab mistakenly ran the preliminary test instead, the results were

apparently positive, and the lab recommended a western blot (grr). The doc then

said, let's just go ahead and treat you for lyme. Today I filled the rx: 100mg

Doxycycline 3x/day for 30 days. I haven't taken it yet, because I read on the

net that joint pain and eye involvement usually signal the later stages

> of the disease and that IV antibiotics are then recommended. So I wonder,

should I go ahead and take the oral doxy and see how it goes, or wait and demand

a Western Blot?

>

> Thanks experts!

>

> Sharon

>

>

>

> ------------------------------------

>

> Lyme Disease News continually updated from thousands of sources around the

> net: http://www.topix.net/health/lyme-disease

>

> MedWorm: The latest items on: Lyme Disease

> http://tinyurl.com/23dgy8

>

[Guest guest]

Welcome Sharon.

I'm sorry you've had to become one of the victims of Lyme. I hope your recovery

is swift and complete. Being sick isn't fun and is even worse with little ones

at home.

I can only speak for myself regarding the treatment. I was a few years into late

stage when I was diagnosed but my rheumatologist ignored my neurlogical symptoms

and gave me the oral doxy for 30 days. The only thing that was helped was the

knee arthritis; they've never swollen up again. Several months later my spinal

fluid tested positive and I was put on the IV rocephin.

That's my experience. I hope you get the treatment that will work for you.

all best,

>

> Hi, I'm Sharon. I'm a 43 year old wife and mom of 2 young daughters, and I'm

always in a hurry and constantly interrupted, so I apppologize in advance if

this email is fragmented. I recently had a bout of painful bilateral eye

inflammation with extreme light sensitivity (panuveitis). The first

opthamologist referred me for an autoimmune work-up. I went to s Hopkins

occular immunology department. JH did a battery of tests and treated the eye

inflammation successfully with steriod drops. All the tests were inconclusive,

and because of a history of joint pain, the doc then ordered a western blot.

Well, the lab mistakenly ran the preliminary test instead, the results were

apparently positive, and the lab recommended a western blot (grr). The doc then

said, let's just go ahead and treat you for lyme. Today I filled the rx: 100mg

Doxycycline 3x/day for 30 days. I haven't taken it yet, because I read on the

net that joint pain and eye involvement usually signal the later stages of the

disease and that IV antibiotics are then recommended. So I wonder, should I go

ahead and take the oral doxy and see how it goes, or wait and demand a Western

Blot?

>

> Thanks experts!

>

> Sharon

>

[Guest guest]

Thank you very much for all the replies. I gather that the consensus is that I

take the doxy ASAP. If I were to get the western blot later, would it still be

positive after taking the doxy?

I live in Columbia, land, and I would appreciate a referral to a lyme

literate doc. I had read about lyme and it's controversy a few years back.

Very discouraging to have to fight an illness and battle a system as well.

Sharon

[Guest guest]

Hi Sharon,

I am a 39 year old mom of 3 little ones and I have been battling Lyme Disease

for about 2 years. I am currently on hold with all meds after having abnormal

labwork come back, but I was on IV Levaquin and Mepron prior to this setback. I

have multiple co-infections including Babesia, Erlichia, and Bartonella ( I

think those are the right names), that we know of. I live in Northern Virginia

and I see a wonderful doctor in Reston. I know that is a hike for you, but would

you travel to DC to see a doctor? I know that there are some great ones out

there. My best piece of advice I can give you is to stay away from the

Infectious Disease specialists. They will beat you down emotionally and make you

think yourself crazy. Follow the advice on the board and get to an LLMD.

Remember, this is going to be a marathon, not a sprint and there will be

advances and setbacks, be prepared and be honest with your children about what

is going on. I tell my children that mommy is sick, but that I will get better

and some days I just don't feel well. They understand and are incredibly

compassionate and accepting. Mind you, I have not laid down to die. I am still

out there doing the mommy thing and some days its hard and I have to slow down,

but I think my kids know that I am doing the best that I possibly can to give

them a great life.

Take Care,

Lissa

>

> Thank you very much for all the replies. I gather that the consensus is that

I take the doxy ASAP. If I were to get the western blot later, would it still

be positive after taking the doxy?

>

> I live in Columbia, land, and I would appreciate a referral to a lyme

literate doc. I had read about lyme and it's controversy a few years back.

Very discouraging to have to fight an illness and battle a system as well.

>

> Sharon

>

[Guest guest]

Hi there, welcome! Hopefully you get the support and positive advice that I have

gotten from everyone here! I was on doxy for a month before I got my Igenex

test, and it came back positive, so I wouldn't worry about it, start it and

start killing those bugs!

good luck

Bridget

>

> Thank you very much for all the replies. I gather that the consensus is that

I take the doxy ASAP. If I were to get the western blot later, would it still

be positive after taking the doxy?

>

> I live in Columbia, land, and I would appreciate a referral to a lyme

literate doc. I had read about lyme and it's controversy a few years back.

Very discouraging to have to fight an illness and battle a system as well.

>

> Sharon

>

[Guest guest]

>

One good way to indicate if your symptoms are caused by Lyme is to see

if you have a Herx reaction after starting the Doxy. A herx is

indicated by a sudden worsening of your symptoms (and in my case a bunch

of new lyme symptoms) as the anti-biotics start to kill the bacteria.

My herx's have usually only lasted about a week, but everybody is

different. After the herx you will gradually start to feel better.

I would take exception with the " you Herx if you have Lyme " theory. I was

positive on every test taken (inc. spinal fluid & CDC's tests) and at more than

one lab, and did NOT Herx at all... ever. There was a bit of stomach upset from

the antibiotics, but nothing at all like the poor folks I hear talking about

herxing. I never even heard of Herxing until I joined online groups (years after

treatment).

I'm not saying that most people don't Herx, not at all! I'm just saying that you

can positively have Lyme even if you don't. I think new-to-Lyme folks need to

hear that too.

Now I'll butt my nose back out...