Need encouragement

[Guest guest]

Hi Judy - reaching out for encouragement is just the right thing to do!!!

The one thing I can say is that AP just isn't a quick fix. It can take a

few months (not weeks) before many people see any improvement after starting

on antibiotics. I know, it was at about 4 months when I knew with certainty

that it was working. The progress is slow....so slow that you don't even

realize its happening.... some of us call it " baby steps. " Or we talk about

two steps forward and one, two or even three backwards. But.....be

patient...keep on...and one day you'll say, " Oh wow, I raised my arm over my

head and I couldn't do that before. " or " Oh, wow, I turned my neck to look

for oncoming traffic, when I have been having to turn my whole body. " or

" Wow, I opened the car door with my left hand instead of reaching across

with my right arm. " or " I stood in line for 15 minutes without feeling I

would fall on the floor with fatigue. " I know we don't want to wait for

improvement and it makes us question what's happening...but it will come!!!

For the sun exposure while on doxy --I used PABA tablets - they are supposed

to guard against sunburn and skin cancer. Be careful when trying PABA--some

people are allergic to it. It used to be used in all sunscreen products,

but was taken out of a lot because of people's allergies. Judy

rheumatic Need encouragement

> Hello to all!

>

> I have been receiving messages from the group for a couple of months now

and

> appreciate the helpful information and support that you exchange. My

husband

> has been diagnosed with an unnamed autoimmune disease of the connective

> tissue. He started on the antibiotic protocol about 5 weeks ago

> (doxycycline). He is gradually building up to a target dose of 100 mg

twice

> a day M-F. Right now he is taking about 100 mg. once a day M-F..

> We have a couple of questions. First, he tested negative for mycoplasmas..

> His doctor (Biddle, in Asheville, NC) said that some people with negative

> tests still respond to the treatment, so we are trying it for at least 6

> months. My husband feels pretty hopeless about the outcome of the

treatment

> because of the negative tests. Has anyone out there tested negative for

> mycoplasmas and still had good results with AP?

> Question 2: How critical is it for him to avoid exposure to sunlight while

> on the doxy? He is a golf course superintendent and it is rather hard for

> him to stay out of the sun! He can wear a wide-brimmed hat, but I worry

> about his arms when it gets warm enough for short-sleeved shirts. He

usually

> gets VERY dark in the summers from being out in the sun..

> Question 3: All of his symptoms seem to be getting worse. It is not a

sudden

> worsening, but just a gradual, continuing thing. It would be encouraging

to

> think that it is herxing, but it probably isn't, is it, since he is

building

> up so gradually?

> Question 4: Just how important is diet? Dr. Biddle wants him to avoid

sugar,

> dairy, refined and processed foods, of course and to eat a good balance of

> protein and carbs. We do pretty well staying away from dairy and refined

and

> processed stuff, but Larry has found it harder and harder to not eat

things

> like some honey, red meat, citrus, etc. Food has always been a big comfort

> thing for him, and when he is feeling so bad and can't enjoy many of the

> other things in life that he used to, it's even harder to stay away from

> foods that he likes. Any comments or advice?

> Thanks so much for any help you can offer..

> Judy B

>

>

>

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

>

[Guest guest]

HI I also test negative, I was on Doxy for almost a year.. I guess the way I look at it is that the Doxy can not hurt him. Where as there are may other meds that can.. I only went off the AP because of some stomach problems which were not caused by the Doxy. It just kept me from being able to keep it down even with food. I have been on the list for awhile now and the things that I have been hearing had lead me to believe that this does work!!!

At this time I am not really ill, if I were and was also able to go back on the AP I would. I too have been helped many times by the wonderful people on this list they are always so willing to help. Please do not hesitate to ask questions we have all been there.

I also started on the doxy 100 mg a day but it was too much for me and I became bedridden. I then started taking it on M/W/F that really seemed to help much more and I got through the herx soon after changing the dose. My doctor at that time had heard about AP and since they did not know what to do with me as I can not take many of the normal medications. She was thankfully curious about it and I took copies off the web site to help her to know what to give me and how much. Then when I had a problem I would post to the list here and someone would give me some information to take back to her. This group was a life line of sorts for me and also for many others.

Also I don't think that 6 months will be enough time to really give the AP a fair chance to work. I saw some improvements after nine months but it was not a major change.. I think I would have done better if I had been able to stay on it.

I hope this helps you and your husband and I wish you and him both well.

Peace,

Sherry

Hello to all!I have been receiving messages from the group for a couple of months now andappreciate the helpful information and support that you exchange. My husbandhas been diagnosed with an unnamed autoimmune disease of the connectivetissue. He started on the antibiotic protocol about 5 weeks ago(doxycycline). He is gradually building up to a target dose of 100 mg twicea day M-F. Right now he is taking about 100 mg. once a day M-F.We have a couple of questions. First, he tested negative for mycoplasmas.His doctor (Biddle, in Asheville, NC) said that some people with negativetests still respond to the treatment, so we are trying it for at least 6months. My husband feels pretty hopeless about the outcome of the treatmentbecause of the negative tests. Has anyone out there tested negative formycoplasmas and still had good results with AP?Question 2: How critical is it for him to avoid exposure to sunlight whileon the doxy? He is a golf course superintendent and it is rather hard forhim to stay out of the sun! He can wear a wide-brimmed hat, but I worryabout his arms when it gets warm enough for short-sleeved shirts. He usuallygets VERY dark in the summers from being out in the sun.Question 3: All of his symptoms seem to be getting worse. It is not a suddenworsening, but just a gradual, continuing thing. It would be encouraging tothink that it is herxing, but it probably isn't, is it, since he is buildingup so gradually?Question 4: Just how important is diet? Dr. Biddle wants him to avoid sugar,dairy, refined and processed foods, of course and to eat a good balance ofprotein and carbs. We do pretty well staying away from dairy and refined andprocessed stuff, but Larry has found it harder and harder to not eat thingslike some honey, red meat, citrus, etc. Food has always been a big comfortthing for him, and when he is feeling so bad and can't enjoy many of theother things in life that he used to, it's even harder to stay away fromfoods that he likes. Any comments or advice?Thanks so much for any help you can offer.Judy BTo unsubscribe, email: rheumatic-unsubscribeegroups

[Guest guest]

Hi Judy! Geoff Crenshaw here.

Message: 10

Date: Fri, 23 Mar 2001 10:07:29 -0500

From: " Judy Brown " <ljsbrown@...>

Subject: Need encouragement

1. Has anyone out there tested negative for mycoplasmas and still had good

results with AP?

Mycoplasma are exceptionally difficult to locate. It hasn't been until just

recently that testing with ANY sense of reliability has come forward and even

then what is being searched for are DNA/RNA chain remnants... it is often

likened to looking for a needle NOT in a haystack, but in THE MIDWEST. Negative

mycoplasma testing does NOT equate to no mycoplasmal infection.

Question 2: How critical is it for him to avoid exposure to sunlight while on

the doxy?

Wide-brimmed hat, light loose-fitting 100% cotton shirts, preferrably with

sleeves, and light, loose-fitting 100% cotton trousers. Sunscreen may be

adviseable.

Not all people react in the same way.

Question 3: All of his symptoms seem to be getting worse. It is not a sudden

worsening, but just a gradual, continuing thing. It would be encouraging to

think that it is herxing, but it probably isn't, is it, since he is building up

so gradually?

Rheumatic disease do not " suddenly " set in, although they seemingly present

that way with frightening regularity. Careful analysis o the disease processes

often reveals mild symptoms even several years, as in 10+, prior to full-blown

presentation of the disease.

Beyond that, someone better qualified will doubtless address this issue.

Question 4: Just how important is diet?

Extremely. Some people have put rheumatic diseases into remission by

manipulation of their diet ALONE. Dr. Biddle's reommendations are sound and

should be followed. The bottom question is not, " How much do you like cake? " but

rather, " Would rather be able to walk, or eat cake? "

>>> but Larry has found it harder and harder to not eat things like some honey,

red meat, citrus, etc. <<<

Remember : loose diet / tight wheelchair

tight diet / no wheelchair

Doesn't work for everybody, obviously, but it might work for him.

Regards, -----------------------

Geoff ** Usual Disclaimers **

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

How can you have hope?

Get under the blood of the Passover Lamb.

EXO 12:7-3 / MAR 14:24 / REV 12:11

http://www.healingyou.org/ Nonprofit: Herbs, Homeopathics & supp's.

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[Guest guest]

oh Gregg,

you crack me up! I have been telling everyone that the weird restrictive diet I'm on is a choice between pain and eating, and of course, I'm choosing not to have pain.

then you come along and better it...loose diet/tight wheelchair! couldn't say it better myself so I'm stealing it.

happy health to you,

[Guest guest]

Our son is 2 yrs old and is ASD (still being evaluated for level).

We started the GFCG diet in Mid-february and saw subtle results (more

eye contact and attempts at interaction) after about 2 weeks and got

our hopes up. This lasted about 1 1/2 weeks and then he caught the

flu bug and regressed back to pre-diet status. I started him on Pro-

biotic (kyo-dopholis) and he has not improved. It's two weeks later

and he still has diareah and it smells terrible. Do you think he is

still fighting the bug or is there something else I can be doing? I

appreciate if anyone has advice for us. This is an awesome group.

You are all great for sharing your wisdom.

PS Haven't seen Dr G yet, we are so new that we are waiting on new

patient packet from Dr. G.

Thanks,

Cat

[Guest guest]

Cat,

Our son (dx autism, now age 3) has been on the GFCF diet since May

2002. It took a while to figure out what in addition to the gluten

and casein were contributing to the diarrhea. We actually figured

out that our son cannot tolerate soy or corn. So, I would suggest

that you try eliminating some other foods (one at a time for several

days). On several occasions we have re-introduced foods with corn or

soy and have noticed our son pinching his stomach, followed by

disgusting, smelly diarrhea. We have also found that although our

son can digest peanut butter, he cannot digest whole nuts, so we

avoid those too.

Good luck!

Kim

[Guest guest]

I would keep it off until you talk to CT. It sounds like the red spot is

getting worse over time so you don't want to do anything to continue that.

Good luck!

Molly

California

Nicolas, 22 months, tort & plagio, STARband 4/25/06-9/12/06, Graduate!

, 4.5

, 7.5

need encouragement

My 5 month old, Isabelle, started wearing her DOC Band on Friday. She

was perfectly fine in it and slept through the night Friday night.

However, yesterday she cried ALL day which she never does. I took it

off to do her therapy and she had a red mark on the back of her head.

It took about an hour for it to go away so we put the band back on.

Last night she refused to sleep in it. She did not even sleep a full

hour. I took it off her this morning to check for spots and she has

the same red spot but it is much worse. It has been an hour and a

half and it is not fading. I put her down for a nap without the

helmet and she is still sleeping. When the red spot does fade should

I put the band back on or should I keep it off until I call Cranial

Tech tomorrow morning? I am so discouraged and hope this is all worth

it.

Ginger

For more plagio info

[Guest guest]

Ginger, don't worry. They just need to shave a little foam out of the

band in that spot and it will be fine. Keep it off until you get in

to see them. It is better not to have the red spot progress into

something that would keep the band off for days after the issue with

the band is resolved. Just make sure you stick around the office for

a bit to make sure they shaved enough out.

>

> My 5 month old, Isabelle, started wearing her DOC Band on Friday.

She

> was perfectly fine in it and slept through the night Friday night.

> However, yesterday she cried ALL day which she never does. I took

it

> off to do her therapy and she had a red mark on the back of her

head.

> It took about an hour for it to go away so we put the band back

on.

> Last night she refused to sleep in it. She did not even sleep a

full

> hour. I took it off her this morning to check for spots and she

has

> the same red spot but it is much worse. It has been an hour and a

> half and it is not fading. I put her down for a nap without the

> helmet and she is still sleeping. When the red spot does fade

should

> I put the band back on or should I keep it off until I call Cranial

> Tech tomorrow morning? I am so discouraged and hope this is all

worth

> it.

>

> Ginger

>

[Guest guest]

Hi Ginger,

I would keep the band off, but don't be discouraged. It is normal to

need extra adjustments in the beginning. After the first week or two

it is much easier. Let us know how it goes.

-christine

sydney 19 mo starband grad

>

> My 5 month old, Isabelle, started wearing her DOC Band on Friday. She

> was perfectly fine in it and slept through the night Friday night.

> However, yesterday she cried ALL day which she never does. I took it

> off to do her therapy and she had a red mark on the back of her head.

> It took about an hour for it to go away so we put the band back on.

> Last night she refused to sleep in it. She did not even sleep a full

> hour. I took it off her this morning to check for spots and she has

> the same red spot but it is much worse. It has been an hour and a

> half and it is not fading. I put her down for a nap without the

> helmet and she is still sleeping. When the red spot does fade should

> I put the band back on or should I keep it off until I call Cranial

> Tech tomorrow morning? I am so discouraged and hope this is all worth

> it.

>

> Ginger

>

[Guest guest]

The band will definitely be worth it. I would keep it off as you

don't want the mark to continue to get worse because if does

Isabelle will have to wear it less. Call CT on Monday.

>

> I would keep it off until you talk to CT. It sounds like the red

spot is

> getting worse over time so you don't want to do anything to

continue that.

> Good luck!

>

> Molly

> California

> Nicolas, 22 months, tort & plagio, STARband 4/25/06-9/12/06,

Graduate!

> , 4.5

> , 7.5

>

> need encouragement

>

>

> My 5 month old, Isabelle, started wearing her DOC Band on Friday.

She

> was perfectly fine in it and slept through the night Friday

night.

> However, yesterday she cried ALL day which she never does. I took

it

> off to do her therapy and she had a red mark on the back of her

head.

> It took about an hour for it to go away so we put the band back

on.

> Last night she refused to sleep in it. She did not even sleep a

full

> hour. I took it off her this morning to check for spots and she

has

> the same red spot but it is much worse. It has been an hour and a

> half and it is not fading. I put her down for a nap without the

> helmet and she is still sleeping. When the red spot does fade

should

> I put the band back on or should I keep it off until I call

Cranial

> Tech tomorrow morning? I am so discouraged and hope this is all

worth

> it.

>

> Ginger

>

>

>

>

> For more plagio info

[Guest guest]

,

Thank you for your words of encouragement. Isabelle is doing great

in her band since we took it in yesterday. She really doesn't seem

to be uncomfortable at all. I was so stressed this weekend but I

know it will all be worth it.

Ginger

> >

> > My 5 month old, Isabelle, started wearing her DOC Band on

Friday. She

> > was perfectly fine in it and slept through the night Friday

night.

> > However, yesterday she cried ALL day which she never does. I

took it

> > off to do her therapy and she had a red mark on the back of her

head.

> > It took about an hour for it to go away so we put the band back

on.

> > Last night she refused to sleep in it. She did not even sleep a

full

> > hour. I took it off her this morning to check for spots and she

has

> > the same red spot but it is much worse. It has been an hour and

a

> > half and it is not fading. I put her down for a nap without the

> > helmet and she is still sleeping. When the red spot does fade

should

> > I put the band back on or should I keep it off until I call

Cranial

> > Tech tomorrow morning? I am so discouraged and hope this is all

worth

> > it.

> >

> > Ginger

> >

>