Re: Worsening Symptoms

[Guest guest]

Hi,

Sounds like s is having a really hard time of it and her parents are

because she is so difficult to live life with at the present time!

Several things came to mind....find a really good CBT/ERP therapist and make a

deal with that she has to go at least a few times. She may not fully

understand how much it may help her.

If that does not work, then you may need to look into a residential program to

get her meds straightened out and hopefully begin therapy.

in Southeastern PA

McRobie <ocdisordermom@...> wrote:

Well, we met with our psychiatrist, whose first impulse on hearing

that my daughter's behavior had worsened, was to suggest adding a fourth

medication to her regimen. We said no. During our appointment last Friday,

said that she just wished that the Zoloft were still working. So the doc said,

okay, let's go back to 250 mg of Zoloft, and remove the Anafranil, and stop the

switchover to Lexapro. It seems so arbitrary. So far I have tried two other

psychiatrists, but no one is taking new patients. (Any recommendations for

someone in the East Bay of the San Francisco Bay Area???)

Here's the deal: at home, it's taking literally ten to twenty minutes for

to walk across a room. It takes ten minutes to get out of the car and into the

house. It takes ten to twenty minutes to say goodbye to me in the morning, which

makes me late. If I get up earlier and try to get her started earlier, there is

no improvement. We are " not allowed " to urge her on or try to make her go faster

- she gets irate and literally screams at us that we're making everything worse.

When she's tapping a glass on the dinner table, repeatedly turning a faucet on

and off, banging her foot repeatedly on the floor, whatever: if we mention it or

ask her to stop, she insists she's " not doing anything. " If we press, she gets

angry. This has always been her reaction - pure anger and rage.

We're coming up on nearly 12 weeks of treatment with Zoloft (with about a month

of decreasing the dosage to 50 and now increasing back up to 250), and frankly,

it's not looking so great for success. I've had recommendations about natural

remedies, and am considering trying that. She refuses therapy and appears to be

in some deep-felt denial. My blood pressure, even on medication, is being

adversely affected, and I am losing it. This morning, after waiting for her to

come to the door for her morning goodbye ritual, I literally turned and walked

away when she screamed at me that I was responsible for her being late. This is

the first time I have kept my promise to leave without giving her the benefit of

the ritual. I felt so awful, abandoning her on our front porch, but I did it.

Since she is at school right now and I am at work, I don't know what impact this

has had on her (her dad takes her to school).

I don't know what kind of advice anyone could give. We are just so worn out.

Thanks for reading.

---------------------------------

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who know.

[Guest guest]

You sound completely caught between a rock and a hard place. It is such

a shame that these SSRIs poop out eventually. Is this the case for

everyone?

I will keep you in my prayers that your docs get her on the right med

combination. I am so sorry, I know the hell you are going through,

been there a few months ago. This disorder is just a nightmare for all

involved. Is there an OCD treatment center near you?

God bless,

Kim M

[Guest guest]

You sound completely caught between a rock and a hard place. It is such

a shame that these SSRIs poop out eventually. Is this the case for

everyone?

I will keep you in my prayers that your docs get her on the right med

combination. I am so sorry, I know the hell you are going through,

been there a few months ago. This disorder is just a nightmare for all

involved. Is there an OCD treatment center near you?

God bless,

Kim M

[Guest guest]

I've read recently that some kids have been on the same medication for a number

of years with success. So maybe it's not universal that SSRIs lose their

effectiveness. We can hope, right? We live less than two miles from a GREAT

CBT center and took there for about four months last year. Her therapist

recommended stopping treatment because she wasn't following through and was

pretty resistant. So we've been reluctant to try to push her back to therapy,

given the experience and her lack of willingness. What changed for you - you

mentioned " a few months ago " ? We need hope!!!

Kim <missmeowza@...> wrote:

You sound completely caught between a rock and a hard place. It is

such

a shame that these SSRIs poop out eventually. Is this the case for

everyone?

I will keep you in my prayers that your docs get her on the right med

combination. I am so sorry, I know the hell you are going through,

been there a few months ago. This disorder is just a nightmare for all

involved. Is there an OCD treatment center near you?

God bless,

Kim M

---------------------------------

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on Answers.

[Guest guest]

wow!! you poor thing!! I would definately get help soon - ERP!! we

don't use meds so I can't help with that but as horrible as it is ERP

does make them see they'll be ok if they don't do this or that - good

luck

eileen

Quoting Joye <cjoye16@...>:

> Hi,

>

> Sounds like s is having a really hard time of it and her

> parents are because she is so difficult to live life with at the

> present time!

>

> Several things came to mind....find a really good CBT/ERP

> therapist and make a deal with that she has to go at least a

> few times. She may not fully understand how much it may help her.

>

> If that does not work, then you may need to look into a

> residential program to get her meds straightened out and hopefully

> begin therapy.

>

> in Southeastern PA

>

> McRobie <ocdisordermom@...> wrote:

> Well, we met with our psychiatrist, whose first impulse on

> hearing that my daughter's behavior had worsened, was to suggest

> adding a fourth medication to her regimen. We said no. During our

> appointment last Friday, said that she just wished that the

> Zoloft were still working. So the doc said, okay, let's go back to

> 250 mg of Zoloft, and remove the Anafranil, and stop the switchover

> to Lexapro. It seems so arbitrary. So far I have tried two other

> psychiatrists, but no one is taking new patients. (Any

> recommendations for someone in the East Bay of the San Francisco Bay

> Area???)

>

> Here's the deal: at home, it's taking literally ten to twenty

> minutes for to walk across a room. It takes ten minutes to get

> out of the car and into the house. It takes ten to twenty minutes

> to say goodbye to me in the morning, which makes me late. If I get

> up earlier and try to get her started earlier, there is no

> improvement. We are " not allowed " to urge her on or try to make her

> go faster - she gets irate and literally screams at us that we're

> making everything worse. When she's tapping a glass on the dinner

> table, repeatedly turning a faucet on and off, banging her foot

> repeatedly on the floor, whatever: if we mention it or ask her to

> stop, she insists she's " not doing anything. " If we press, she gets

> angry. This has always been her reaction - pure anger and rage.

>

> We're coming up on nearly 12 weeks of treatment with Zoloft (with

> about a month of decreasing the dosage to 50 and now increasing back

> up to 250), and frankly, it's not looking so great for success.

> I've had recommendations about natural remedies, and am considering

> trying that. She refuses therapy and appears to be in some

> deep-felt denial. My blood pressure, even on medication, is being

> adversely affected, and I am losing it. This morning, after waiting

> for her to come to the door for her morning goodbye ritual, I

> literally turned and walked away when she screamed at me that I was

> responsible for her being late. This is the first time I have kept

> my promise to leave without giving her the benefit of the ritual. I

> felt so awful, abandoning her on our front porch, but I did it.

> Since she is at school right now and I am at work, I don't know

> what impact this has had on her (her dad takes her to school).

>

> I don't know what kind of advice anyone could give. We are just so

> worn out. Thanks for reading.

>

>

>

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

> Have a burning question? Go to Answers and get answers from

> real people who know.

>

>

[Guest guest]

Good Morning

I wanted to ask you for some feedback

- in the past couple weeks my symptoms seem to be getting worse- when I wake up

in the morning my legs-quads mainly, inner thighs some, calfs, feet, buttocks on

both sides, same dermatomes are really achey and I have to take a hot shower, my

percocet, ibuprofen, arthritis spray and wait until the pain meds kick in before

I can walk around comfortably.

I recently had an EMG and everything was normal except that " isolated membrane

instability in the lumbar paraspinals were seen of a unknown clinical

signifigance. ...findings can be seen in nerve root irritation-radiculitis,

facet arthritis, and diabetis mellitus " .

I do not have diabetes.... anyway.. not sure what could be making the aching

worse, and again its on both sides of my buttocks, front of my legs-quads, my

hips ache, down my legs, doesnt feel like sciatica.

Could it be more pressure from the discs?

The ortho in Baltimore thinks that my smalll pedicules are causing stenosis...

the aching is getting worse every morning.

Jeez I feel like Im 80 years old, and will only be 45 in 2 weeks. (Im only

about 10 pounds overweight, so I dont think its that.)

Please give me some feeback, Im thinking about trying the lyrcia for the muscle

stiffness and aching.

Thank you

RN in DC

Re: Oxycontin

spinal problems

Date: Sunday, March 15, 2009, 3:15 PM

the reason I asked about the generic Oxycontin was because someone mentioned

that they were given a generic form of it and it didn't work as well - my

pharmacy told me there wasn't a generic version, hence the reason I had to pay

over $150 for a 30 day supply. : ( Oh well, I was just curious.

Thanks everyone for your responses about the itching. If my itching was severe,

I would definitely think it was an allergic reaction and would stop taking it,

but it is mild and actually today is a little better. I did some research and

saw that mild itching is fairly common - I just wanted to know from some of you

folks if it does subside with time. Benadryl is a good suggestion but I already

feel pretty loopy and that would probably put me over the edge to sleepytown. :

)

As far as my dosage, from what the doc told me & from the bottle - I was

prescribed 30 mg three times a day, so I space it out about 8 hours, not 12 -

maybe 12 hours for a different strength than what I have? Or maybe because of

the severity of my pain he wanted me to take it every 8 hrs vs. 12?

Thanks everyone.

Jenn

[Guest guest]

,

I am not ...but I will say that 10 lbs of overweight equates to way

more then 10 lbs of axial load in your back......especially depending on the

condition of your abdominal muscles...for women who have had a couple of

kids etc with weak abdominal....can cause problems...

Deb RN

From: spinal problems

[mailto:spinal problems ] On Behalf Of

wendy.tom@...

Sent: Monday, March 16, 2009 9:14 AM

spinal problems

Subject: Re: Re: worsening symptoms

Good Morning

I wanted to ask you for some feedback

- in the past couple weeks my symptoms seem to be getting worse- when I wake

up in the morning my legs-quads mainly, inner thighs some, calfs, feet,

buttocks on both sides, same dermatomes are really achey and I have to take

a hot shower, my percocet, ibuprofen, arthritis spray and wait until the

pain meds kick in before I can walk around comfortably.

I recently had an EMG and everything was normal except that " isolated

membrane instability in the lumbar paraspinals were seen of a unknown

clinical signifigance. ...findings can be seen in nerve root

irritation-radiculitis, facet arthritis, and diabetis mellitus " .

I do not have diabetes.... anyway.. not sure what could be making the aching

worse, and again its on both sides of my buttocks, front of my legs-quads,

my hips ache, down my legs, doesnt feel like sciatica.

Could it be more pressure from the discs?

The ortho in Baltimore thinks that my smalll pedicules are causing

stenosis... the aching is getting worse every morning.

Jeez I feel like Im 80 years old, and will only be 45 in 2 weeks. (Im only

about 10 pounds overweight, so I dont think its that.)

Please give me some feeback, Im thinking about trying the lyrcia for the

muscle stiffness and aching.

Thank you

RN in DC

Re: Oxycontin

spinal problems

<mailto:spinal problems%40>

Date: Sunday, March 15, 2009, 3:15 PM

the reason I asked about the generic Oxycontin was because someone mentioned

that they were given a generic form of it and it didn't work as well - my

pharmacy told me there wasn't a generic version, hence the reason I had to

pay over $150 for a 30 day supply. : ( Oh well, I was just curious.

Thanks everyone for your responses about the itching. If my itching was

severe, I would definitely think it was an allergic reaction and would stop

taking it, but it is mild and actually today is a little better. I did some

research and saw that mild itching is fairly common - I just wanted to know

from some of you folks if it does subside with time. Benadryl is a good

suggestion but I already feel pretty loopy and that would probably put me

over the edge to sleepytown. : )

As far as my dosage, from what the doc told me & from the bottle - I was

prescribed 30 mg three times a day, so I space it out about 8 hours, not 12

- maybe 12 hours for a different strength than what I have? Or maybe because

of the severity of my pain he wanted me to take it every 8 hrs vs. 12?

Thanks everyone.

Jenn

[Guest guest]

>

> This lack of improvement and worsening symptoms is why my LLMD has recently

> prescribed high dose of Doxy. I am concerned about adding Doxy (antibiotics)

> because of the side effects and it’s known effect to drive the spirochetes

> deeper into the muscle tissue giving only temporary relief of symptoms

creating

> greater problems in the future.

If you use doxy make sure you take at least 300 mg/day, use probiotics and liver

support, detox, stay out of the sun and have your blood levels checked regularly

(I'm pretty sure your LLMD will check these items with you). Then the risk is

relatively low, nothing to worry about. I think there are better choices then

doxy, but it is up to your LLMD to judge the situation and decide what is best

for you (and what is allowed in your area ...).

Regarding 'driving spirochetes deeper into the tissue': nobody really knows.

People claim many things based on testtube studies that are basically worthless

for this type of pathogen, that lives in the host tissues or even inside the

cells.

> I have been also learning on this site that there could be something going on

> behind the Lyme that is the reason symptoms are worsening and persisting; such

> as damage to the immune system. That the conventional focus to kill the

bacteria

> is beginning to change to the need for repair and support of the immune

system.

> Is there a more specific scientific argument that I could give to my LLMD

either

> against or in support of antibiotic use? Thank you for your comments.

Yes, we don't know for sure what the real problem is in Lyme disease, why (some)

people are so ill and others have just a bit of 'discomfort'. I don't think it

is related to spirochete numbers. It could be general 'toxins' or some kind of

immune damage. The idea of antibiotics is to help your immune system keep up

with the infection - but this will only help if the infection is the real

problem why you are not recovering.

If I were you, I would try the ABX for 1-3 months and see if there is

significant improvement. Normally you should see some obvious change within the

first month or so (change can include temporarily worse ...). Keep in mind that

doxy will decrease many symptoms even if it doesn't get rid of the spirochetes,

because it has anti-inflammatory properties (which also means that the symptoms

COULD come back after ABX treatment).

I had severe neuro issues myself, and was treated in hospital for nearly two

months. Before starting Buhner, I had 1 month of IV rocephin and nearly a year

or oral ABX (first doxy/plaquenil, later zinnat/flagyl. The rocephin helped with

some acute neuro issues, but many problems came back after it was stopped. Most

of the neuro issues remained despite the oral ABX. I finally got rid of most of

the problems with Buhner herbs; IMHO they did a better job than the ABX (and the

ABX damaged my gal bladder, gut etc. while I had no serious problems with the

herbs).

Of course my situation is different, maybe the herbs worked better for me

because the ABX had already lowered the spirochete load (btw, after 1 year of

ABX I still had positive western blot and visible spirochetes in my blood - it

is obvious that ABX are not a sure way to get rid of Borrelia).

I think in general Buhner is right: we have to improve the terrain instead of

(just) fighting the bugs. Help the body recover from the damage, help the immune

system to get functioning again etc.

[Guest guest]

I don't have a specific answer to your question. But your post made me wonder if

you're giving your brain enough detox and support? Smilax for instance, but I

was also thinking of lithium which is specific for the brain. jo

>

> Is there a more specific scientific argument that I could give to my LLMD

either

> against or in support of antibiotic use? Thank you for your comments.

>

>

>

>

> ________________________________

>

>

>

>

>

>

[Guest guest]

Hi, . Your colorful description really rang true for me: " LSD in the

punch " . Before I was diagnosed, my first indication that something was really

wrong (aside from the high fevers) was my mental state. What I would suggest

(because it helped me at the time) is to find a therapist that you can work with

to sort out your thoughts and ground you. I highly recommend a type of therapy

called " somatic experiencing " .

I don't know what to tell you re: your question about Doxy. It didn't work for

me when I took a 6 week course, but it works for some people. Just remember

that you're paying your LLMD to give you medical advice, but you don't have to

take it right now if it doesn't feel right. Stress is something you should

avoid.

Phil

>

> My LLMD prescribed recently a high dose of Doxy because my symptoms are

getting

> worst. He said we need to bring down the bacterial load to lessen the

symptoms.

> I was diagnosed with Lyme four years ago. (positive western blot) I found the

> tick on me and I had a round rash followed by excruciating knee pain and flew

> like symptoms.

>

> I have never taken antibiotics to treat Lyme. I started with a natural

> antibiotic called Allicin with many supplements. I then added Hydrotherapy

> (fever treatments) with great improvement. I did this for two years and then I

> switched to CS and Hydrotherapy for one year. I went back to the Allicen with

> supplements for six months and I am now on Buhner Herbal Protocol or the last

> four months and I have been at full strength for four weeks. I make a

decoction

> tea with the herbs and drink 4oz. three times a day.

>

> I have made steady improvement, although it has been more like one step back

and

> two forward; until about a year ago my symptoms have leveled off and even

> worsened. My symptoms are mainly neurological and it has been described it as

> Nero psychiatric Lyme disease. I feel edgy, detached, brain irritation,

> depersonalization, paranoia. . . . On a bad day it is like who put the LSD in

> the punch. These words do not begin to accurately describe the psychological

> pain I am experiencing. I have wanted to chop off my fingers and toes and

throw

> myself through the glass window to the street below.

>

> This lack of improvement and worsening symptoms is why my LLMD has recently

> prescribed high dose of Doxy. I am concerned about adding Doxy (antibiotics)

> because of the side effects and it’s known effect to drive the spirochetes

> deeper into the muscle tissue giving only temporary relief of symptoms

creating

> greater problems in the future.

> I have been also learning on this site that there could be something going on

> behind the Lyme that is the reason symptoms are worsening and persisting; such

> as damage to the immune system. That the conventional focus to kill the

bacteria

> is beginning to change to the need for repair and support of the immune

system.

> Is there a more specific scientific argument that I could give to my LLMD

either

> against or in support of antibiotic use? Thank you for your comments.