Hello from a new member

Posted July 14, 2002 · July 14, 2002

Hello Rob,

Welcome to the group! You've given us a great run down of your story.

My wrists are tired and achy right now, but I did want to address

your question about vitamin D in food. For some reason, this doesn't

seem to be very effective in redressing the P (psoriasis) and PA

(arthritis). Sunlight and Dovonex are actually better. It may be that

the body doesn't adequately absorb vitamin D. Plus vitamin D doesn't

really naturally occur in food. Sunlight on the skin is the natural

method of manufacture.

I hope you'll feel welcome to ask more questions, share your

experiences and vent with us!

Best wishes,

meghan

> Hi Everyone,

>

> I'm a newbie to the group and really appreciate hearing all the

experiences and advice.

>

> A little about me:

> 36 years old, living in San Diego (Carmel Valley), had just a

little patch of psoriasis on my elbow for a few years and never

thought of it as a ticking time bomb.

>

> PA hit me as a swollen toe on New Year's Day. I thought it was

sprained from Rollerblading the day before. When I went to my GP six

weeks later, she thought it was broken or sprained too (but stange

that it hadn't healed by now, she said), but when it didn't heal

within another month, it was off to the podiatrist who gave me a

blood test that sent me to a rhumy. By then it had spread to my big

toe and I had to hop around on what foot not knowing what was wrong.

Initially, all signs pointed to gout, but from my rhumy, I heard the

cute (but not really) phrase " sausage digit " and " psoriatic

arthritis " for the first time. My rhumy started me on Indomethacin,

which helped the foot but made me sick as heck for a good part of a

couple days a couple weeks into the treatment (thought it was stomach

flu at first). Tried one cortisone shot to reduce the inflamation

and switched to Bextra which helped for a while, but then the heel in

my other foot got sore and we've added MTX (with folic acid) since

then. No dramatic change with 6 weeks on MTX and hoping for

improvement.

>

> I take small steps these days and avoid long walks, but have

otherwise tried to keep life as normal as possible. I'm sticking

with modest weight training and now bicycle instead of treadmill for

my warm-up and aerobics. Since I don't hurt so much when taking

little steps, I don't feel too bad, but it sure invokes sorrow and

sympathy in my friends and coworkers, who think from the limp that I

must be in great pain (I'm still not quite used to the reaction).

>

> A couple questions/concerns that I have:

> 1) On my blood tests, my ALK has been around 170 to 190 for the

last couple months, which means my liver may be unhappy. My rhumy

said he's never seen anyone with high ALK like mine, but all the

other liver items in the normal range. I'll see a specialist on that

next month for an ultrasound checkup (speedy HMO service), but in the

mean time, anybody out there have experience with the high ALK and

what it means?

>

> 2) Does increasing plain old vitamin D intake help with PA (I'm

thinking foods and vitamins rather than the external creams and

sunshine)?

>

> Best Regards to All,

>

> -

>

> [Moderator's note: Welcome to the group ! Your introductory

message was excellent, and I hope you benefit from the support and

information on the PA forum. Ron]

Posted July 14, 2002 · July 14, 2002

...I too live in San Diego. My wife used to live in Carmel Valley but we

live in Stone Crest Village now. I had a similar experience with PA except it

started in my hands instead of my feet. I ran the gambit of drugs. I could not

tolerate MTX. I have been on Enbrel a year with astounding results. If you

are getting bad liver test this early in the game I would suggest you consider

Enbrel. Especially since you have had obvious PA for only a short time and are

an athlete. I have been diagnosed for only three years but the PA was very

aggressive. The trick is to avoid joint damage. After a little over a year on

Enbrel I may be in remission. I am planning to discontinue in a few months and

see what happens. I am a guitarist and Enbrel has given my hands back.

That said. The best RD I know of in San Diego is just around the corner from

you. Dr. M. Jaffer, 9850 Genesse Avenue, Suite 860. 858-457-3270 in the

Ximed building next to Scripps Memorial Hospital. I think he is conducting some

clinical trials for several TNF drugs. My wife is an executive scientist in

biotech and swears he is the best in town.

Ebrel may stop the advance of the disease and give you a chance to go into

remission. Please get an opinion from this guy since he is in your

neighborhood. RGDS Ronnie E.

[ ] Hello from a New Member

Hi Everyone,

I'm a newbie to the group and really appreciate hearing all the experiences

and advice.

A little about me:

36 years old, living in San Diego (Carmel Valley), had just a little patch of

psoriasis on my elbow for a few years and never thought of it as a ticking time

bomb.

PA hit me as a swollen toe on New Year's Day. I thought it was sprained from

Rollerblading the day before. When I went to my GP six weeks later, she thought

it was broken or sprained too (but stange that it hadn't healed by now, she

said), but when it didn't heal within another month, it was off to the

podiatrist who gave me a blood test that sent me to a rhumy. By then it had

spread to my big toe and I had to hop around on what foot not knowing what was

wrong. Initially, all signs pointed to gout, but from my rhumy, I heard the

cute (but not really) phrase " sausage digit " and " psoriatic arthritis " for the

first time. My rhumy started me on Indomethacin, which helped the foot but made

me sick as heck for a good part of a couple days a couple weeks into the

treatment (thought it was stomach flu at first). Tried one cortisone shot to

reduce the inflamation and switched to Bextra which helped for a while, but then

the heel in my! other foot got sore and we've added MTX (with folic acid) since

then. No dramatic change with 6 weeks on MTX and hoping for improvement.

I take small steps these days and avoid long walks, but have otherwise tried

to keep life as normal as possible. I'm sticking with modest weight training

and now bicycle instead of treadmill for my warm-up and aerobics. Since I don't

hurt so much when taking little steps, I don't feel too bad, but it sure invokes

sorrow and sympathy in my friends and coworkers, who think from the limp that I

must be in great pain (I'm still not quite used to the reaction).

A couple questions/concerns that I have:

1) On my blood tests, my ALK has been around 170 to 190 for the last couple

months, which means my liver may be unhappy. My rhumy said he's never seen

anyone with high ALK like mine, but all the other liver items in the normal

range. I'll see a specialist on that next month for an ultrasound checkup

(speedy HMO service), but in the mean time, anybody out there have experience

with the high ALK and what it means?

2) Does increasing plain old vitamin D intake help with PA (I'm thinking foods

and vitamins rather than the external creams and sunshine)?

Best Regards to All,

-

[Moderator's note: Welcome to the group ! Your introductory message was

excellent, and I hope you benefit from the support and information on the PA

forum. Ron]

Posted July 14, 2002 · July 14, 2002

Meghan,

I cannot tell you how much is helps to have you moderate/create this board.

Your calm, sweet insight really encourages me. Until you started talking

about Vitamin D, I did not clue in to what my phyiscal therapist had been

pushing me to take short walks in the sun. He wants me to spend at least 2 x

5 minutes per day befoer 9:00 am in the sun, walking, sitting, etc. He said

this is what makes the VitaminD and calcium work in your body, and that it is

critical for my well being. It you hadn't been talking about it, I probably

would have just glossed over it, but the importance is critical. Thank you,

Hugs,

Carol

Posted September 6, 2005 · September 6, 2005

Hi Becky and welcome!

Can you please let us know what State you are located in? Perhaps

we can as a group find some local support for you.

You say " we suspect she's trying hard to say far more and even

string words together "

What concerns me most is that if your child is having trouble

signing or pointing on command she can be misdiagnosed by some as

having a receptive delay.

The lack of ability to sign or point on command could be a sign of a

motor planning problem in her limbs such as global apraxia. That

could stand alone or co exist with weakness in her limbs as well.

For this reason, in addition to a speech and hearing evaluation

which is of course needed and essential, I would recommend you also

seek as soon as possible an occupational therapy exam and a

neuromedical exam with either a pediatric neurologist or

developmental pediatrician. When it comes to therapists in

general, you want therapists who look at the whole body even when

it's " just a late talker " .

What are the reasons in your opinion that the SLP wanted your

daughter to also have an evaluation by an oral motor specialist (one

who treats eating and swallowing disorders) Does your child show

any of the following signs?

http://www.cherab.org/information/speechlanguage/oralapraxia.html

And I know you probably read The Late Talker -but here are some

online parent signs of verbal apraxia

http://www.cherab.org/information/speechlanguage/verbalapraxia.html

And some " soft signs "

http://www.cherab.org/information/speechlanguage/parentfriendlysoftsigns.html

Your daughter is the perfect age at 2 to bring her up to speed and

give her the best chances to overcome all through Early

Intervention.

http://www.cherab.org/information/speechlanguage/earlyintervention.html

(are these your adorable kids?! http://www.growingacorns.com )

=====

Posted September 11, 2005 · September 11, 2005

> Hi Becky and welcome!

Hi, ! Thank you for the warm welcome and so much helpful information!

> Can you please let us know what State you are located in? Perhaps we

> can as a group find some local support for you.

I'm in Oregon.

> You say " we suspect she's trying hard to say far more and even string

> words together "

>

> What concerns me most is that if your child is having trouble signing

> or pointing on command she can be misdiagnosed by some as having a

> receptive delay.

That is a major concern for me as well so when we saw the private SLP

for her evaluation, I made it very clear that I do not believe she has

any kind of receptive delay. I believe she could also see that while

she observed my dd in her office.

> The lack of ability to sign or point on command could be a sign of a

> motor planning problem in her limbs such as global apraxia. That

> could stand alone or co exist with weakness in her limbs as well.

The SLP who evaluated my dd called after I had posted. I asked her

specifically about apraxia at that time and she said that global and/or

verbal or oral apraxia are some things that came to mind for her and she

strongly recommended a team evaluation through Early Intervention, which

we now have set up for later this month.

> What are the reasons in your opinion that the SLP wanted your

> daughter to also have an evaluation by an oral motor specialist (one

> who treats eating and swallowing disorders)

I told her about our early breastfeeding difficulties, my dd's difficult

transition to solid foods, and her strong preference for only certain

textures and not mixing textures. Because she is very small for her

age, we're often concerned about how much she eating. We discovered

that she does far better if we just spoon feed her pureed (stage 2) baby

foods for at least one of her meals. We try to encourage as much

self-feeding as possible, but at least once a day we'd like to know

something got into her tummy. We're not the kind of parents who hover

over our children's eating habits. We're actually rather laid back, but

with Dawsyn, our guts tell us to pay closer attention. KWIM?

> Does your child show any of the following signs?

> http://www.cherab.org/information/speechlanguage/oralapraxia.html

> * smile?

She's always smiling and usually such a happy child that it's hard to

say whether she does this on command or not. Just paying attention to

her brings a bright smile.

> * kiss or make a kiss face?

She can not pucker her lips for a kiss. Just kind of smacks her lips

while moving her lower jaw. It's really hard to describe, and she will

do it when we ask for a kiss.

> * stick out his/her tongue?

Sometimes. This is one of the early signs that I noticed. She'll try

to stick it out, but instead it goes the other way or doesn't move at all.

> * try to touch his/her tongue to his/her nose?

No.

> * make raspberries?

No.

> * lick peanut butter off his/her upper, side, or lower lip?

No.

> * imitate making a funny face?

No.

> * blow out candles or blow bubbles? (a typically-developing ten-month

> old can do this)

Recently she has come closer to doing this, but still no.

> * bite his/her lower lip?

I've never asked her to do this on command, but she does this when she's

eating to scrape off the food from her lower lip.

> * show vvarious emotions in facial expressions?

I think so.

> * blow his/her nose on command?

No.

> And I know you probably read The Late Talker

Actually, I just started it. I didn't know about the book until I found

your website. It arrive the other day and I'm several pages into it now.

> -but here are some online parent signs of verbal apraxia

> http://www.cherab.org/information/speechlanguage/verbalapraxia.html

It's hard to say from that list as it seems like things that would be

expected of a much older child. My dd will be two this week. The only

motor planning difficulties she seems to have are with speech and using

her hands to communicate. Her only sensory " issues " are with her

mouth. I'm not an expert so I could easily be missing something.

Here is a list of the words she can say and the best way I can write

them how she says them. She did not say her first word until she was

16mo...

uh-oh -- uh-oh

Da -- Daddy

meh-meh -- binky/snuggly

my-my -- eat/more

no -- no

nigh-nigh -- night night

baw-ee -- bye

eye-ee -- hi

eh-oh -- hello

Mama/Mom -- Mommy

ay-ee -- hey

ca -- cat

duh -- all done

baw-oh -- bottle

baw-oo -- ball

baw -- block

daw-oo -- doll

wuh-ee-uh -- What is that?

wuh-ee-oo -- What are you doing?

gee -- cheese

> (are these your adorable kids?! http://www.growingacorns.com )

That's Dawsyn right there on the front page. That picture was taken in

June. She loves to read next to me on the couch. She's a very happy,

social, playful, inquisitive, busy little girl... except when she's made

so many attempts to express herself and we don't understand her. Then

she morphs into screaming pitifully and hitting or scratching us.

Sometimes she'll even attempt to bite us. We've worked so hard to help

her find her voice in a variety of ways and we know she understands us.

She just can't express it with anything but her eyes, tantrums, and the

cute little excited thing she does when she's thrilled about something.

Thanks for reading if you got this far! )

Becky

Posted September 6, 2007 · September 6, 2007

Glen,

Since you mentioned you are in New Jersey, I wonder if you would recommend

any LLMDs who work with people with the ALS component of this illness. I

live in a state - Arizona - that have no experienced LLMDs and we need one

to deal with this complication for my husband. I am from NJ and am

considering visiting with my sister while going to a knowledgeable doctor

for treatment.

If you know of any contacts for support groups in New Jersey, I'd appreciate

those also.

Thank you for any help you can be.

Ann Prow

aprow@...

Posted September 7, 2007 · September 7, 2007

GLEN.... I JUST NEEDED TO SAY THAT I LOVE YOUR VIEW ON THIS> I'VE BEEN TOYING

WITH THE IDEA OF THE SAME WAY OF LOOKING AT ALL THIS MYSELF> YOU STILL TAKE ALL

YOUR PHYSICAL TREATMENT THO TOO RIGHT? LIKE ABX ETC? kath

Glenroy Wolfsen <wolfsen@...> wrote: Welcome to the Group. The

Lyme community here is wonderful, knowledgeable, supportive, understanding and

communicative. I read it all the time, and post sometimes. My name is Glen and I

live in New Jersey. I am a person who used to have Lyme and two co-infections. I

myself to not have Lyme - my body is fighting Lyme along with energies that are

original with the Origin of the Universe. But, I, myself do not entertain the

idea that " I have Lyme " . I do not give Lyme permission like that. I am friendly

with it, because it has taught me so very many things I would never have learned

otherwise - so I am not in a fight with it at all. What is, of course, is. I am

being a person of health, intentionality, focus, stress-free, positive (beyond

the polarity of positive/negative) and imaginal in the manifestation of the

healthy body which in cooperation with its own Source, will make a living

environment where Lyme finds that I am

NOT a good host.

Welcome to this group and I am happy to be able to greet you. I love you and

hold you in the love of God. I pray for your wellness and hope you write often.

- Glen

Posted September 7, 2007 · September 7, 2007

Welcome to the Group. The Lyme community here is wonderful, knowledgeable,

supportive, understanding and communicative. I read it all the time, and post

sometimes. My name is Glen and I live in New Jersey. I am a person who used to

have Lyme and two co-infections. I myself to not have Lyme - my body is

fighting Lyme along with energies that are original with the Origin of the

Universe. But, I, myself do not entertain the idea that " I have Lyme " . I do

not give Lyme permission like that. I am friendly with it, because it has

taught me so very many things I would never have learned otherwise - so I am not

in a fight with it at all. What is, of course, is. I am being a person of

health, intentionality, focus, stress-free, positive (beyond the polarity of

positive/negative) and imaginal in the manifestation of the healthy body which

in cooperation with its own Source, will make a living environment where Lyme

finds that I am NOT a good host.

Welcome to this group and I am happy to be able to greet you. I love you and

hold you in the love of God. I pray for your wellness and hope you write often.

- Glen

[ ] Hello from a new member

Hi Everyone,

I'm new here. I've had Lyme since I was a kid, but went undiagnosed

until 2 years ago. I'm just looking to give and receive support, from

friends who understand how devastating and life altering this disease

and it's co-infections can be.

I wish you all a quick journey back to a place of wholeness and health.

Kindest regards,

- The Lyme Contender!!

Posted September 9, 2007 · September 9, 2007

Dear Kath.:

I was on three antibiotics (Doxy., Mepron & {can't remember this one!!!}) for a

little over 3 years (along with a host of supplements, etc. .... all this with

some, but limited success. [i had gotten Lyme most likely some time during a

period when I was caring for my wife who was bed-ridden with MS, so I was not

very much aware of how I was feeling - so because of that, the Lyme {plus two

co-infections} had a chance to become advanced]. One of my daughters talked to

me about a naturopath (plus many other abilities that are not advertised because

of the risk to his work from the " establishment " ). I was of course, hesitant -

but eventually went for his evaluation. I decided to work with his protocol

which did not include abx. For another 3 years I worked with this doctor. Now

I am at the point where I do not go to any doctor, and I take no abx... only one

natural antibiotic and other things that support the health of my

body/mind/spirit as well as diet and exercise....this is the long way of

answering your question...I hope I this gives you a small idea of what is going

on with me. (This is not a very complete answer, but I don't want to write too

long or give you information that isn't something you want....but, if you want

to know more, I'll be happy to answer)

Thank you for writing again and write anytime.

Love and Peace: Glen

Re: [ ] Hello from a new member

GLEN.... I JUST NEEDED TO SAY THAT I LOVE YOUR VIEW ON THIS> I'VE BEEN TOYING

WITH THE IDEA OF THE SAME WAY OF LOOKING AT ALL THIS MYSELF> YOU STILL TAKE ALL

YOUR PHYSICAL TREATMENT THO TOO RIGHT? LIKE ABX ETC? kath

Glenroy Wolfsen <wolfsen@...> wrote: Welcome to the Group. The Lyme

community here is wonderful, knowledgeable, supportive, understanding and