Help needed

August 27, 2008

Well I talked to the nurse for the ped. rheumy yesterday cuz the doc

is on vacation for two weeks. They are going to be adding an oral

steroid about 2 hours prior to the Enbrel shot. Not really something

I wanted to do, but thats what they suggested. She is taking benedryl

every 6 hours currently along with Zyrtec, which were both prescribed

by her allergy doc, to keep the hives away or at least not get as

many. He is also adding Zantac as they said it is also a histamine

blocker.

The rheumy is sending me information about Arava. Has anyone on here

tried this or heard of it?

I also asked the nurse to speak with the doctor about trying the

Remicade on a higher dose.

So we will see what happens. I hated to have to add more medication

to 's already huge list.

I also wanted to thank you all for your thoughts and suggestions.

Hugs,

(, 14, Poly JRA, chronic hives, severe IBS, back issues

>

> > Hello everyone,

> >

> > I don't really post too much on here, but I do enjoy reading all

of

> > your posts. I have learned so much from all of you so I thought I

> > would see if anyone has every experienced anything like this

before.

> >

> > My daughter, aged 14, was diagnosed with Poly JRA in March

of

> > 2006. At the time she was put on naproxen as many children are

when

> > first diagnosed. Well that alone did not work so the ped. rheumy

addd

> > methotrexate injections. Of course those two didn't work either

so we

> > stopped the naproxen, continued the methotrexate and added

Remicade.

> > She took that for about 6 months until her body built up

antibodies

> > to it so it stopped working. She was switched to Humira which she

> > took for about a month an a half until we realized it was the

cause

> > of her hives. She was allergic to it. She was started on weekly

> > Enbrel, but we think she is allergic to that as well. She is

having

> > the injection site reactions, but they are real bad and last until

> > her next shot if not longer. Everywhere I've read it says it could

> > last 2 to 5 days, but hers is lasting 7 to 10 days and she is

getting

> > hives again. They ped. rheumy says it would be highly unlikely she

> > would be allergic to both, but this is the same as she was with

the

> > Humira, but her site reaction is way worse. I have put a call in

to

> > the allergist so we will see what he says.

> >

> > My main concern is that the Remicade no longer works on her and if

> > she is allergic to both Humira and Enbrel, what is our next step.

> > Aren't those the only three TNF blockers available? Has anyone

else

> > had this happen to them? What did the doctor do? I am so worried

> > right now and don't know where to turn.

> >

> > I know this was a long post. I just wanted to thank you all for

> > letting me go on and on. =]

> >

> > Hugs and Kisses,

> > mom to , 14 (Poly JRA, severe IBS, chronic

urticaria,

> > and back problems)

> >

>

December 23, 2008

You will find everything you need to know about lyme including resources at this

site.

http://www.wildcondor.com/lymelinks.html

Sudylo RN / CHT

www.juliashbot.com

From: Lane <hollywood_dreams67@...>

Subject: [ ] Help needed

lyme-aid

Cc: hollywood_dreams67@...

Date: Tuesday, December 23, 2008, 10:17 PM

A friend of mine may have Lyme Disease she has had MS, Lupus, and Parkinson

Symptoms. She was told her Lyme test were negative and doctor can't figure out

what is wrong with her. I had to send LLMD a Positive lyme test, how can she get

into see LLMD if her test are negative. I told her to get copy but I don't

understand what to look for. I know doctors go by cdc criteria, and sometimes

test are positive but they say they are negative. I am confused about VS

Western Blot. I understand that the Western Blot is more realiable but .

Which ones have bands or do they both? Which one test for Lyme Antigens or Both?

What bands would be positive if it is postive any or only certain ones?

March 3, 2009

On Tue, 03 Mar 2009 13:40:48 -0000, you wrote:

>i saw the endo today and have been told i do not qualify for T therapy

>even though i am a difficult case. he will refer me next weeks in his

>discussions with the other docs, but i think they wont help me.

>

>i am 37 and in the uk. i have one testicle working (undescended when

>young) and am in a bad way.

>

>my blood T results are here:

>april 2008 330

>jan 2009 200

>feb 2009 440

>

>my LH is always mid range, but the FSH is always way over (9)

>

>i have a sperm count of 18m and the doc agrees the testicles are

>struggling with this side of operations, but he says enough T is being

>made.

>

>i want to do a trail of a very low dose of T. can someone tell me

>where i can buy the stuff from. Tostram has been recommended.

A few things:

There's a chart in the files section that shows average T levels by

age. Your levels are below average for an 80 year old male. Show that

to your endo. Ask him why he wants to condemn you to the sexuality of

a subpar 80 year old.

A low dose of T will not help you at all. T has feedback loops through

the LH FSH and other channels that tells the brain how much T to make.

If you add T, your body will make less. It will not supplement the

level you have and add to it. Testosterone therapy is a replacement

therapy. When you take it, your body makes less on its own. To get

levels high enough you have to supply virtually all the T your body

will see. Testosterone is called a replacement therapy because the

outside source replaces the natural production.

Now there are some meds that can increase production if your testicles

are fully working. Clomiphene can increase T production in secondary

patients (where the breakdown is in the pituitary - not the

testicles). Your FSH number suggests you may be primary (your

testicles can't make enough). These will likely be no help then.

You should ask for an E2 test. Estradiol. E2 is converted from T and

can lower T levels by as much as 200 to 300 points. The conversion

takes T out of the system and it also fools the feedback systems into

making less T. If you are lucky the source of your problem is high E2.

There are medicines that prevent E2 from being formed and these can

boost T levels in some by 300 points. The most commonly used med is

arimidex. This is probably the simplest way to get good T levels.

Failing that most of us are taking shots or gels for the rest of our

life and struggling with doses, E2 conversion, and side effects.

But get the T. Don't settle for their answers. If you need to see

another doctor DO IT. COme here if you need recommendations. There's

a favorite who consults with locals by phone at www.allthings.male.com

I suggest going there and reading his documents section.

March 3, 2009

thanks for getting back to me.

i dont think we test e2 levels in the uk. can this be done by a

saliva test?

do you think it would be an idea to trial arimidex and see how i get on.

it seems i have this fertility problem and then the testosterone one.

i need both to improve. do you thin Hcg will be any good for me. or

is arimidex a similar soultion.

one final thing. i have been reading today that the average size of a

testicle is 20-30 mls. well i had mine scanned by ultra sound last

autumn as part of our fertility checks. the dead testicle is only 8

mls and the working one is 14mls - still very small compared to the

average. i wonder if this small size has affected things.

March 4, 2009

On Tue, 03 Mar 2009 19:44:08 -0000, you wrote:

>thanks for getting back to me.

>

>i dont think we test e2 levels in the uk. can this be done by a

>saliva test?

>

>do you think it would be an idea to trial arimidex and see how i get on.

>

>it seems i have this fertility problem and then the testosterone one.

> i need both to improve. do you thin Hcg will be any good for me. or

>is arimidex a similar soultion.

>

>one final thing. i have been reading today that the average size of a

>testicle is 20-30 mls. well i had mine scanned by ultra sound last

>autumn as part of our fertility checks. the dead testicle is only 8

>mls and the working one is 14mls - still very small compared to the

>average. i wonder if this small size has affected things.

With the dead testicle and small one, you are most likely primary

hypogonadic. Meaning your testicles can't produce enough to get you

where you should be. It's unlikely E2 treatment will help much.

You likely will need T replacement therapy to get you up to the right

levels. You will still want to check E2 to be sure, and on TRT you

want to keep an eye on it.

Saliva tests are near useless in reliability. There are studies on E2

in men and the use of arimidex. You may call it anastrozole in the UK

and have generic available. I don't know. But bringing studies to the

doc may help get it approved.

This is the treatment regimen used by one of our most well known docs

in the US for these conditions:

http://www.allthingsmale.com/word_docs/TRT.doc

That may help with your doctor.

March 4, 2009

There are two functions for the testicles.

Sperm and Testosterone.

It is easy to get a fertility test because you have a real need.

The hormone level is also easy to get with your problem.

In high school back in the 40's I had a strangled testicle that swelled to the

size of my fist. I could not get treatment then as no doctor knew what happened

in a small town. In a year it was the size of a grape. I developed normally and

grew to 6' tall.

We had 4 children as the remaining testicle filled in for both functions. I had

a vasectomy when 45.

When I reached 60 my ED became severe and I began TRT but the ED came back after

a few weeks.

I still continue hormone pellet therapy as the form of TRT.

I was able at that time, 1961 to get injection therapy, trimix, and restore my

performance.

ernestnolan

>

> >thanks for getting back to me.

> >

> >i dont think we test e2 levels in the uk. can this be done by a

> >saliva test?

> >

> >do you think it would be an idea to trial arimidex and see how i get on.

> >

> >it seems i have this fertility problem and then the testosterone one.

> > i need both to improve. do you thin Hcg will be any good for me. or

> >is arimidex a similar soultion.

> >

> >one final thing. i have been reading today that the average size of a

> >testicle is 20-30 mls. well i had mine scanned by ultra sound last

> >autumn as part of our fertility checks. the dead testicle is only 8

> >mls and the working one is 14mls - still very small compared to the

> >average. i wonder if this small size has affected things.

>

> With the dead testicle and small one, you are most likely primary

> hypogonadic. Meaning your testicles can't produce enough to get you

> where you should be. It's unlikely E2 treatment will help much.

>

> You likely will need T replacement therapy to get you up to the right

> levels. You will still want to check E2 to be sure, and on TRT you

> want to keep an eye on it.

>

> Saliva tests are near useless in reliability. There are studies on E2

> in men and the use of arimidex. You may call it anastrozole in the UK

> and have generic available. I don't know. But bringing studies to the

> doc may help get it approved.

>

> This is the treatment regimen used by one of our most well known docs

> in the US for these conditions:

> http://www.allthingsmale.com/word_docs/TRT.doc

>

> That may help with your doctor.

>

March 5, 2009

I too am in the UK...it is possible to get E2 measured....simply request it,

they will do it...if not demand it. I did and it was

measured.............however the problem then is getting it treated. My levels

were tested (last test results normal range 1-150 my results came back at

356).......I wanted it treated...so now got to wait until my next endo visit in

may this year. This was tested last August (08).......so prepare for a

fight...but be steadfast...it can be done...very very easily!!

Steve

> >

> > >thanks for getting back to me.

> > >

> > >i dont think we test e2 levels in the uk. can this be done by a

> > >saliva test?

> > >

> > >do you think it would be an idea to trial arimidex and see how i get on.

> > >

> > >it seems i have this fertility problem and then the testosterone one.

> > > i need both to improve. do you thin Hcg will be any good for me. or

> > >is arimidex a similar soultion.

> > >

> > >one final thing. i have been reading today that the average size of a

> > >testicle is 20-30 mls. well i had mine scanned by ultra sound last

> > >autumn as part of our fertility checks. the dead testicle is only 8

> > >mls and the working one is 14mls - still very small compared to the

> > >average. i wonder if this small size has affected things.

> >

> > With the dead testicle and small one, you are most likely primary

> > hypogonadic. Meaning your testicles can't produce enough to get you

> > where you should be. It's unlikely E2 treatment will help much.

> >

> > You likely will need T replacement therapy to get you up to the right

> > levels. You will still want to check E2 to be sure, and on TRT you

> > want to keep an eye on it.

> >

> > Saliva tests are near useless in reliability. There are studies on E2

> > in men and the use of arimidex. You may call it anastrozole in the UK

> > and have generic available. I don't know. But bringing studies to the

> > doc may help get it approved.

> >

> > This is the treatment regimen used by one of our most well known docs

> > in the US for these conditions:

> > http://www.allthingsmale.com/word_docs/TRT.doc

> >

> > That may help with your doctor.

> >

>

March 6, 2009

Why would it not be possiblt to get estradiol/estrogen measured anywhere?

I'm in UK - went to GP requested it and got it tested - that was it.

> > >

> > > >thanks for getting back to me.

> > > >

> > > >i dont think we test e2 levels in the uk. can this be done by a

> > > >saliva test?

> > > >

> > > >do you think it would be an idea to trial arimidex and see how i get on.

> > > >

> > > >it seems i have this fertility problem and then the testosterone one.

> > > > i need both to improve. do you thin Hcg will be any good for me. or

> > > >is arimidex a similar soultion.

> > > >

> > > >one final thing. i have been reading today that the average size of a

> > > >testicle is 20-30 mls. well i had mine scanned by ultra sound last

> > > >autumn as part of our fertility checks. the dead testicle is only 8

> > > >mls and the working one is 14mls - still very small compared to the

> > > >average. i wonder if this small size has affected things.

> > >

> > > With the dead testicle and small one, you are most likely primary

> > > hypogonadic. Meaning your testicles can't produce enough to get you

> > > where you should be. It's unlikely E2 treatment will help much.

> > >

> > > You likely will need T replacement therapy to get you up to the right

> > > levels. You will still want to check E2 to be sure, and on TRT you

> > > want to keep an eye on it.

> > >

> > > Saliva tests are near useless in reliability. There are studies on E2

> > > in men and the use of arimidex. You may call it anastrozole in the UK

> > > and have generic available. I don't know. But bringing studies to the

> > > doc may help get it approved.

> > >

> > > This is the treatment regimen used by one of our most well known docs

> > > in the US for these conditions:

> > > http://www.allthingsmale.com/word_docs/TRT.doc

> > >

> > > That may help with your doctor.

> > >

> >

>

June 10, 2010

Hello all,

I have been reading posts for some time now. I am in awe of all that this group

does for their children. My son has SPD. He was tested for Autism and the

results came back less than a 2% chance of him on the spectrum. I see strong

connections with SPD and autism. I have been trying my best to figure out a diet

for my son. We eliminated artificial preservatives, colorings, and high fructose

corn syrup. He seems to be sensitive to salicylates. We still allow gluten and

dairy. I am trying to figure out a vitamin supplement plan for him. I have him

on a multi. I was using additional magnesium, zinc and vitamin D supplements as

well. The ingredients in the additional supplements concern me. I was wondering

if someone could recommend a brand or brands for zinc and magnesium. He can

swallow pills fine so I don't need flavored versions. I have read so much and

feel overwhelmed. I haven't found much through my SPD sites regarding using

supplements to reduce symptoms. My son is extremely sensitive to noise. It is

one of the most impairing aspects of his disorder. I have seen notes through

this group about reducing sensitivity with the aid of supplements. We are

financially not able to pursue a DAN doctor. Our pediatrician is good for basic

illness, but not this. Any guidance that could be provided is very appreciated.

Right now I feel like a failure as a mom because I keep searching and I just

can't find the answers to help him. Thank you for listening.

Sonya

June 10, 2010

There has been some connection between bacterial issues being addressed and

sound sensitivity being reduced.

Before figuring out which anti-bacterial agent or probiotic works best, it would

need to be determined which bacteria was at play.

Help needed

Hello all,

I have been reading posts for some time now. I am in awe of all that this

group does for their children. My son has SPD. He was tested for Autism and the