New to group with questions

[Guest guest]

Welcome, Theodora. I think you may be in a bit of a panic if you are

expecting a wheelchair in his future! There is no reason it should

come to that. Although I understand his reluctance to take strong

medications, they are proven to actually STOP the progression of the

disease so that irreversible bone and joint damage does NOT occur.

The problem is that if you wait until the destruction occurs, there

is no fixing it. Methotrexate and the biologicals are disease-

modifying drugs that PREVENT the damage from occuring. Yes, there

are some unpleasant but usually manageable side effects. Yes, there

are some slight risks of serious consequences. However, the risk of

destructive damage is also high, and being confined to a wheelchair

or not being able to play his instrument is a pretty serious

consequence as well, wouldn't you say? I'm only offering another

perspective on these meds. I finally decided that the risk of not

taking the better meds was greater for me than the risk of taking

them.

best regards to you and your husband,

sherry z

[Guest guest]

Thank you Sherry,

I in no way meant to offend anyone at all. (I am surrounded by

wheelchairs in my life as I caretake for three grandparents. In fact

I met with a contractor today about making the house more

accessabile) Yes I guess am in a panic. We just got the diagnosis

and do not know what to expect. I have spent every night researching

this disease and it seems that there is no set course.

Accepting this.. it requires a life reframe. What really is

important? The whole issue of mediating stress, respecting and taking care of

the body on a deeper level... you can go by half your life and miss this until

you are confronted with a health issue such as this.

I went back into this groups archives and did learn a lot. In terms

of medications I have already been telling him exactly what you tell

me in terms of halting the joint deterioration. That is why I am

setting an appointment with a rheumotologist. My husbands general

practitioner never even made a referral for one! I wonder if a lot

of doctors are uneducated on the subject.

Hearing your stories and thoughts is very helpful because we do not

know anyone with PsA. As you share your day to day issues and how you manage

them ... I do respect it very much.. So thank you to all of you. Theodora

> I think you may be in a bit of a panic if you are expecting a

> wheelchair in his future!

[Guest guest]

Hi Theodora,

I know it can be tough without healthcare insurance, I don't want to

change the topic, but in that you have children, you should really look

into some sort of healthcare insurance. In the long run, it will cost

less than not having it.

ANYWAY, homeopathic remedies can work for some, eliminating different

things from his diet might help, I certainly tried some and had no

positive results. Others, swear by whatever works for them. I believe

the reality is that PA is a dissease that affects everyone

differently. Therefore, whatever alleviates (not CURE, as there is NO

cure)the disease is also different for everyone. I know PA is an auto-

immune disease, therefore it should be treated with auto immune drugs.

In conventional drug treatment this means, Methotrexate, Enbrel, Humira

and others. I have no idea if any homeopathic remedies address this.

Stay Well,

[Guest guest]

No offense taken, Theodora! I just don't want you both to imagine

more trouble that may never happen. PA is enough to deal with as it

is now, without jumping ahead and imagining a bleak future. But I do

understand! A year and a half ago I couldn't imagine ever

being " normal " again. Although I'm still not back to my previous

activities, I'm so much better now that I can imagine a day when I am

like my old self.

wishing you the best,

sherry z

--- In , " theodorams "

> Thank you Sherry,

> I in no way meant to offend anyone at all.

[Guest guest]

Theodora,

You're doing the right thing to research this disease because

education gives you the power to make educated decisions. Just don't

overreact by spending your hard earned money on what could likely be

unnecessary changes. Panic is a natural response to perceived threats

of any kind. Just recognize your emotional reactions and try to think

things through before acting.

Finding a good rheumatologist who treats others with this diagnosis

and empathizes with your husband's " complaints " without making him

feel badly about voicing them. None of us appreciate the latter but

especially men. IMHO

One rheumy at the University of Texas Medical Branch in Galveston, TX

told me that PsA often begins in the lower spine with hip pain. That

was about 20 years ago and I'm still able to motivate. Giving in

to a wheelchair would make his condition worse; staying mobile is

best. The grandparents have different issues than your hubby.

His PCP laid a foundation by ordering blood work and x-rays; the

specialists will take it from there. Get copies of all these tests. I

find it helpful to carry a hard copy with me to others treating me. It

has also been enlightening to me to read their comments in their

notes. By law now, we can request and get these records, so I usually

ask for them at each visit.

And, yes, many if not most general practice physicians are not well

educated (or forgot) about PsA; keep in mind that many of the symptoms are

similar. The general idea in medicine is to rule out the common diseases first.

If you and hubby have trusted his GP before, why not ASK him for a

referral? I'm thinking of seeing an internal medicine clinic because

I'm not happy with the only rheumatologist in our area.

There's been some good advice from others about insurance. It's less

expensive in your early years BEFORE anyone develops problems that

some companies will deny coverage for a pre-existing condition. I

waited several months to allow my insurance to take effect and be able to say

I'd not seen a physician in the previous 6 months for PsA. I had self-diagnosed

long before that.

You are doing so many of the right things, especially when you

re-think your priorities! Keep in mind that all this effects the

entire family, especially if you're spending all your evenings at the

computer. Don't neglect anyone, particularly your marriage! PsA can

become the third person in a couple.

Hang in there! This is a great group; I've learned so much from them

even though I'm not personally very active.

Wishing you and your family the very best,

Patty in a cool Pineywoods of East Texas

[Guest guest]

Hi Theodora,

I thought I would add my 2 cents worth. You don't ever have to worry about

offending any of us. We are all pretty tough by now, and you will be, too. It

is normal to panic in a situation such as this. You will find that a lot of

doctors really don't understand this disease and a lot of rheumies are not so

good either. Many of us have gone from one to another until we find the one

that takes the best care of us.

I also felt like my life had ended when I first was diagnosed, but once the

medicine started working I found I only had to modify. Which meant I couldn't

do my retail job any longer, so am on SS Disability,

and that is not like finding a gold mine by any means. I now live with my

oldest daughter and as she works all the time, I take care of the house and

have many hobbies. By the way, I'll be 65 in July, so

I don't have any little ones to worry about. My heart goes out to those who

still have young families.

Any time you need someone to talk to, we are always here.

God Bless,

Janet in Ca

[Guest guest]

I am new to this group and supplements. This is going to be pretty long and I

apologize for that ahead of time!

My son is 6 yrs. old, non-verbal, Autistic. (I also have a " typical " 5 yr. old

and 2 yr. old).

We do Neurofeedback 2 x per week with him, which has basically fixed his

horrible sleep since starting 1 1/2 yrs. ago to 99%.

NCD 10 drops 2 x per day since Sept. 2007. Only added 1 drop per week and

have kept it at the 10 drops 2 x per day 3 months now.

Threelac - 3 packets in the morning. Started at 1 packet for almost 2 months

and increased slowly to 3. Was told to keep it at 3 packets for 1 month then

maintain at 2 packets.

Started to try enzymes, then he got a stomach bug. Trying to introduce them

again.

My son was vomiting this past week every night for 6 nights and not eating

great. He has just started eating again (wasn't sure if it was stomach bug or

viral detox someone had mentioned to me). And his constipation is back. We

have done Miralax - had a bad reaction to it, fish oil until he would take it

anymore, mineral oil again wouldn't take any more, baby enemas, suppositories.

I just bought Aloe Juice to try with him.

I skipped the NCD and Threelac a couple of times while he was sick.

While sick, he developed some more behaviors we hadn't seen before ex; every

door has to be shut; the light switches have to be in the same direction; no

blankets, clothes etc. can be on any furniture... He has also been hyper,

whiny and defiant and really impatient. We have been really lucky with our son.

He is usually a great listener, really sweet kid who loves to hug etc.. This is

a huge change for us with him.

My question is, should I cut back on the Threelac and start the enzymes again?

Or, maintain the Threelac at this dose and start the enzymes again? I have an

assortment of enzymes here and would like to put him on one of the combination

ones (ex; Trienza or Kirkmans Maximum Spectrum Enzym-Complete DPP-IV) which one

would be the best out of the two?

I give him the threelac mixed with just enough applesauce first thing in the

morning. How can I get the enzyme into him in a food that he would detect the

least amount of taste? I have read the suggestions about the wafers, but he is

not a big chocolate kid. He does however love the Popsicle Mighty Minis (I know

he is getty plenty of sugar with those, but it is his one favorite thing). He

drinks from juice boxes and small bottles of water. He can't swallow pills.

Has anyone seen great improvements giving the enzymes with breakfast and

dinner? My son's school is not very receptive to these things. He also eats

the school lunches, so sneaking them in a lunch wouldn't work.

I did call a DAN Dr., but they wanted $1,000 before I could make an

appointment. Another one I called said she couldn't tell me how much it would

cost until the Dr. decided what tests to do and the girl was extremely rude to

me and my husband on the phone. Therefore, I am trying to do this by reading

all your posts in the NCD/Enzyme and Miralax groups.

I also called a Homeopath in my area, but they are not taking new patients.

Thank you for all your help and suggestions.

Kelley

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

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[Guest guest]

>>And his constipation is back. We have done Miralax - had a bad

reaction to it,

Miralax can be nasty

http://www.danasview.net/miralax.htm

Here are other constipation ideas

http://www.danasview.net/constip.htm

Viral die off tends to cause a lot of yeast, and yeast overgrowth can

cause constipation, so consider that

http://www.danasview.net/yeast.htm

> While sick, he developed some more behaviors we hadn't seen before

ex; every door has to be shut; the light switches have to be in the

same direction; no blankets, clothes etc. can be on any furniture...

Latent viruses caused OCD for my son. As I learned later, viruses

went straight into his brain. It took many years of OLE, vitamin C,

lysine, and Virastop to eliminate his viruses. So based on my son's

experience, it is likely your son's virus went into his brain. Give

vitamin C and lysine, those were required by my son to keep viruses

out of his brain, and pull out the ones that were already there.

Watch for more yeast overgrowth. As I mentioned above, viral die off

causes a LOT of yeast.

> My question is, should I cut back on the Threelac and start the

enzymes again?

I would increase the yeast protocol, and add vitamin C and lysine.

Start with low doses of the vitamin C and lysine, because they will

likely cause more yeast.

Dana