Re: My Introduction-long message

[Guest guest]

Have you been tested for Lyme disease? If not, it is best to take an

antibiotic at least one week before the blood work is done to help bring out

the germ. There is lots of seronegative lyme disease. Lyme is more

infectious than previously thought. You mentioned bacterial origins and I am

responding to that.

I have RA but later we found I have lyme (as well or lyme that cause RA ---

take your pick) I suspect that I have carried Lyme disease quite

asymptomatically for years, but as we age and face increase stress in our

lives we can pick up additional pathnogenic bacteria, viruses and heavy

metal and parasites (especially from travel) this results in a messed up

immune system that can no longer cope. Remember however, you might never be

able to clearly peg which bacteria or other bug is wreaking havok in your

system. In general however the tetracyclines cover many different

pathnogens, for instance it can be used for malaria, various pararsites,

Lyme disease (borrelia borgdorferi) and mycoplasms....so it is a good first

choice as it covers various different organisms. Get a hold of the

Arthritis Breakthrough book by henry scammel. It should help to answer some

of your questions. Best of luck. kathy

rheumatic My Introduction-long message

>Hi, I'm new here. In the fall of 1999, I came down with a headache, upset

>stomach and diarrhea a couple hours after attending my grandfather's

>funeral. The next few days I had a slight headache and generally felt weak

>but was not to concerned. Then the fourth day after the funeral I woke up

>kind of stiff, went for a walk, stretched muscles and jogged some. That

>night the pain in my shoulder blade and back got really bad. I figured I

>must have pulled a muscle so I took some Naprozen and long hot baths and

>slept a lot for the next four days. The pain in my leg went away, but had

>intense pain in my neck, shoulder, and clavicle. Then I noticed that my

>left clavicle was swollen and hot to the touch. This scared the #$#@!! out

>of me. I thought I had a tumor or cancer. I saw my GP two days later. He

>said that I probably had a virus that was making my bones, muscles, and

>joints ache. He took blood for a complete fasting blood profile and gave

>me a prescription for Flexeril and Naproxen. The medicine helped with the

>stiffness, but I had muscle spasms in my back that woke me after 3-4 hours

>of sleep every night.

>

>I know it was madness, but my husband and I had been trying to conceive for

>1 year and I was afraid of the side effects from the drugs, so I stopped

>all meds except 6-8 aspirin per day for pain when I thought I had a chance

>at conception. Over the next couple weeks, I started noticing pain in my

>right thumb and left foot. Both became very painful and swollen, had a

>hard time walking. I was in much pain and by then knew I wasn't pregnant

>so I started the Flexeril and Naprosyn. I was very depressed and cried

>easily.

>

>My GP finally got my blood profile results back and found that I had high

>C-reactive protein (49.7 mg/L) and sedimentation rate (107 mm/hr), low iron

>and RBC but was negative for RA. He suggested that I take vitamins and

>continue with the Naproxyn. I continued to have a lot of pain, depression,

>loss of appetite and weight. I stayed in bed almost 24 hours a day.

> Didn't sleep much because of the pain. It was painful to even roll over

>or get out of bed. I cried a lot and had suicidal thoughts. I dragged my

>carcass back to my GP and told him about my lack of sleep, intense pain,

>depression and weight loss. He gave me Darvocet for pain and Vioxx for

>arthritis symptoms. Well, the medicines worked great! I slept all night

>for the first time in weeks. It took just over one month to discover that

>I had arthritis at the age of 38 but now that I had drugs I felt I could

>deal with it.

>

>My GP recommend me to a rheumatologist in Birmingham, Dr. Holly Bastian.

> She switched me from Vioxx to Celebrex (200 mg 2x/day) which is basically

>the same thing, at least I remain fairly pain free with it also. She

>thinks I have Ankylosing Spondylitis (sero-negative RA) but is not sure.

> So far I don't think I have any permanent bone or joint damage. One toe

>on my right foot has remained enlarged but doesn't hurt much. If I miss

>one of my Celebrex pills, I pay for it later. The pain crops up mostly in

>my feet, ankles, hips, back and wrists. I don't have to resort to Darvocet

>very often, maybe once or twice a month when my work requires me to walk

>long distances and my feet can't take it.

>

>My husband and I have again been trying to conceive, without much luck. It

>has now been 2 1/2 years since the first arthritis flare-up episode. My

>fertility doctor says that my egg quality is poor, probably due to the

>arthritis. We are now considering adoption.

>

>I just happened to run across this web group that treats arthritis with

>antibiotics. I am very curious whether it could help me. I have an

>appointment with my Rheumatologist in 2 weeks so I have been making a

>collection of articles to present to her. I remember asking her before

>whether she thought what I had originated from some kind of bacterial

>infection. I have no family history of arthritis on either side of my f

>amily and my initial onslaught of the disease was cold or flu-like

>symptoms. She thought it likely, but said that it is virtually impossible

>to discover the actual pathogen and so therefore would not know how to

>treat it. She is a fairly young doctor, three years younger than me, and I

>hope I can convince her to at least try this therapy since it is relatively

>inexpensive and fairly harmless.

>

>If anyone in this group has had similar experiences or has a convincing

>collection or articles that backs up this treatment I would appreciate

>hearing from you. Sorry this is so long. Best wishes to all fellow

>sufferers,

>

>Karan

>

>

>

>To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

>

[Guest guest]

Hi Karan! Geoff Crenshaw here.

Happy, but also sad, to welcome you to our not-so-little group, as will

many others, I'm sure.

> Date: Fri, 1 Jun 2001 16:43:20 -0700

> From: Karan <kbailey@...>

> Subject: My Introduction-long message

>

> Hi, I'm new here. In the fall of 1999, I came down with a headache,

> upset stomach and diarrhea a couple hours after attending my

> grandfather's funeral. The next few days I had a slight headache and

> generally felt

(snip)

> My GP recommend me to a rheumatologist in Birmingham, Dr. Holly

Bastian. (snip)

> symptoms. She thought it likely, but said that it is virtually

> impossible to discover the actual pathogen and so therefore would not

> know how to treat it. She is a fairly young doctor, three years

younger

> than me, and

Sounds like you *may* be a candidate for the parasite-related type

infection that is tossed around here under the acronym JMT

(Jaffey-Mellore Technique.) There was / is a really helpful fellow on

this board named Joe Graff (j) that has been getting treated this way

and may be able to help you, if you are interested in that.

The reason I say that is the proximity of the funeral to the onset. Now

this is a huge, make that H-U-G-E assumption on my part, but most

funerals in the U.S. include some sort of food service, usually under

less-than-sanitary conditions, often accompanied by flies and other

pests. The circumstances are ripe for food poisoning, parasites, etc.

Then again, it may have nothing to do with food at all, but might be a

result of the immune system being compromised by grief, depending on how

you felt at the loss of your Grandfather -- different people, different

ways.

You may just be in a really good place having a young Dr., as they tend

to be open to experimenting, etc. Obviously this can be a bad thing, but

for you it may be advantageous.

Print out the protocol from http://www.rheumatic.org/, read it, and take

a copy to your Dr. BTW, there are some very effective natural/herbal aid

s for the pain, inflammation and swelling too.

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

Geoff ** Usual Disclaimers **

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

The Formula of Life:

Ge12.2+2Sa7.12.13(1Ch17.12.14)+(Ps2+69.4\72/78.2+107.9)+

Is2.3/7.14\11.1-5/35.4-6(42.1-4+45.21+50.6+52.13)53+59.16+

Je31.15+Mi5:2=HaMoshiach

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

http://www.800-800-cruise.com/index-aff.html Make money & travel!

http://www.800-800-cruise.com/ Over a MILLION travel deals!

[Guest guest]

Hi Karan,

I was also surprised to have been diagnosed with rheumatoid arthritis. I was

diagnosed in November of 2000. My pain started in my left foot. I thought

it was due to a favorite pair of clogs that I wore practically everyday.

After switching to a new pair of shoes I quickly realized something was

wrong. I had also been tired REALLY tired. More than the usual mom with two

young kids tired. While at the doctors for a flu shot, I told him about my

symptoms. I asked him to check for Lymes since we are in a high risk area

and our dog had tested positive. Little did I know he ran a rheumatoid

factor test as well. I was a 98. Looking back on it all, it had started way

before my foot. I had been waking in the morning to numbness and what we

call a pins and needles (which is what we refer to the feeling caused by

having a limb " fall asleep " , in both of my arms and hands from the elbow down.

I thought I was sleeping in an awkward position or something.

Anyway, not to ramble on, I found Dr Brown's book while looking on the net

for alternatives to some of the RA drugs that were now in my future. I'm

only 37 and the thought of taking some of that stuff scared the heck out of

me. After reading the book and finding this great group I gave the AP a try.

That was three months ago and I am happy to report that as long as I watch

what I eat, I am feeling better everyday. I do take Vioxx 25mg twice a day

in addition to the Minocin but I can do whatever I need to in a pretty pain

free state. You do have to be careful not to overdo it though or the fatigue

does kick in. I can't urge you strongly enough to give this a try. There

are lots of the groups case histories at the rheumatic.org site. Perhaps

some of these stories would compel your Dr to try it. My doctor was

convinced it wouldn't work and only gave me the Minocin to shut me up. Now

he sheepishly admits it looks like it's working. I brought him the protocol

from the rheumatic.org website. Anyway, please consider trying this. If it

doesn't work you can always try the hard stuff. Let me know if I can help

you in anyway.

Best Wishes and Welcome,

Dee

ljdsll@...

[Guest guest]

Hi, my name is Caroline Stronge and I am new to the group. I have a 10 year

old daughter diagnosed with RA, sero positive (RF of 500 odd!) in January of

this year. I have just started her on the AP under Dr. Chiu in Wellington,

New Zealand. I picked up on your comment that so long as you watch what

you eat you do fine. I am trying some dietary changes for , with

much difficulty I might add as she is such a picky eater and I wondered what

things you add or avoid to keep well.

If anyone else is reading this, I would love to be in contact with parents

of children on AP.

Keep the information rolling ...thank you.

Caroline Stronge.

Re: rheumatic My Introduction-long message

> Hi Karan,

>

> I was also surprised to have been diagnosed with rheumatoid arthritis. I

was

> diagnosed in November of 2000. My pain started in my left foot. I

thought

> it was due to a favorite pair of clogs that I wore practically everyday.

> After switching to a new pair of shoes I quickly realized something was

> wrong. I had also been tired REALLY tired. More than the usual mom with

two

> young kids tired. While at the doctors for a flu shot, I told him about

my

> symptoms. I asked him to check for Lymes since we are in a high risk area

> and our dog had tested positive. Little did I know he ran a rheumatoid

> factor test as well. I was a 98. Looking back on it all, it had started

way

> before my foot. I had been waking in the morning to numbness and what we

> call a pins and needles (which is what we refer to the feeling caused by

> having a limb " fall asleep " , in both of my arms and hands from the elbow

down.

> I thought I was sleeping in an awkward position or something.

> Anyway, not to ramble on, I found Dr Brown's book while looking on the net

> for alternatives to some of the RA drugs that were now in my future. I'm

> only 37 and the thought of taking some of that stuff scared the heck out

of

> me. After reading the book and finding this great group I gave the AP a

try.

> That was three months ago and I am happy to report that as long as I

watch

> what I eat, I am feeling better everyday. I do take Vioxx 25mg twice a

day

> in addition to the Minocin but I can do whatever I need to in a pretty

pain

> free state. You do have to be careful not to overdo it though or the

fatigue

> does kick in. I can't urge you strongly enough to give this a try. There

> are lots of the groups case histories at the rheumatic.org site. Perhaps

> some of these stories would compel your Dr to try it. My doctor was

> convinced it wouldn't work and only gave me the Minocin to shut me up.

Now

> he sheepishly admits it looks like it's working. I brought him the

protocol

> from the rheumatic.org website. Anyway, please consider trying this. If

it

> doesn't work you can always try the hard stuff. Let me know if I can help

> you in anyway.

>

> Best Wishes and Welcome,

> Dee

> ljdsll@...

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

>

[Guest guest]

Hi Caroline and welcome

I'm another patient of Dr Chiu and there is another on this group also.

Where do you live? I'm in Auckland.

ABout your diet request: I have found it tremendously beneficial to keep

off gluten. We are also advised to stay away from the nightshade family

(tomatoes, capsicums, potatoes, aubergine) and from red meat. There are

diet suggestions on or linked to the website. Various supplements also

help, and flax seed.

Gail

> From: " Stronge " <stronges@...>

> Date: Sun, 3 Jun 2001 19:56:54 +1200

> <LJDSLL@...>

> Cc: <rheumatic >

> Subject: Re: rheumatic My Introduction-long message

>

> Hi, my name is Caroline Stronge and I am new to the group. I have a 10 year

> old daughter diagnosed with RA, sero positive (RF of 500 odd!) in January of

> this year. I have just started her on the AP under Dr. Chiu in Wellington,

> New Zealand. I picked up on your comment that so long as you watch what

> you eat you do fine. I am trying some dietary changes for , with

> much difficulty I might add as she is such a picky eater and I wondered what

> things you add or avoid to keep well.

> If anyone else is reading this, I would love to be in contact with parents

> of children on AP.

> Keep the information rolling ...thank you.

> Caroline Stronge.

> ----- Original Message -----

> From: <LJDSLL@...>

> <kbailey@...>

> Cc: <rheumatic >

>

[Guest guest]

Right you are - I was corn-fused! I remembered Joe writing about

parasitic stuff and JMT and got the two married -- sorry.

GC

Re: My Introduction-long message

> Geoff,

>

> I think you may be a little confused here. JMT is an

> accupuncture/accupressure technique similar to NAET that changes the

> body's reaction to specific energies that were found to be commonly

> problematic to people with these two types of arthritis. JMT is

> specific treatment protocols for osteo (eight problem energies) and

> rheumatoid (thirteen problem energies, I think) arthritis. NAET is to

> eliminate allergies by changing the body's reaction to an allergen.

> The protocol for osteo arthritis usually takes 8 treatments, while the

> protocol for rheumatoid arthritis usually takes 20 treatments. This

> varies greatly! Jaffe and Mellor claim a 100% success rate in the

> treatment of osteo arthritis and an 80% success rate in the treatment

> of rheumatoid arthritis. I have had about 14 JMT treatments so far

> and have had good results but still have a ways to go. As far as I

> know, there is no specific parasitic infection that JMT treats. For

> instance, my last treatment was to turn off the attack on my bursa (I

> have ischial bursitis besides RA). For more information about JMT, go

> to http://www.JMT-jafmeltechnique.com/. For more information about

> NAET, go to http://www.NAET.com .

>

> Criss

[Guest guest]

Hi Teressa and sorry I haven't replied sooner. We have had a rocky couple

of weeks and is going into hospital today to have steroid

injections in her wrists and ankles. They are pushing for us to start the

Methotrexate which we are stalling on, wanting to give the AP a chance. She

is on 250mg Erythromicin 3x daily and I wonder if that is a common

antibiotic and/or dose to be on? She is losing too much movement though in

those areas and that is why we are trying the injections, to see if it gives

first, some relief and secondly, more range of motion. I have been reading

with interest the messages on here about Moducare. I have looked up a bit

about what it is but wonder why if it has been around since 1998 people are

just trying it now. Has it recently become available in the US maybe ... I

can't seem to get any leads on whether it is available in NZ and/or if it is

suitable for children. Any thoughts?

How are things progressing for you. Please keep in touch and thank you for

your concern.

Caroline Stronge.

Re: rheumatic My Introduction-long message

>

>

> > Hi, my name is Caroline Stronge and I am new to the group. I have a 10

> year

> > old daughter diagnosed with RA, sero positive (RF of 500 odd!) in

January

> of

> > this year. I have just started her on the AP under Dr. Chiu in

> Wellington,

> > New Zealand. I picked up on your comment that so long as you watch

what

> > you eat you do fine. I am trying some dietary changes for ,

with

> > much difficulty I might add as she is such a picky eater and I wondered

> what

> > things you add or avoid to keep well.

> > If anyone else is reading this, I would love to be in contact with

parents

> > of children on AP.

> > Keep the information rolling ...thank you.

> > Caroline Stronge.

>

[Guest guest]

Caroline

I am sorry about what you are dealing with. I had one thought I wanted to

share with you, I had adult onset RA three years ago. it was aggressive and

hit me intensly. My RA factor was 660. I could barely walk, or sit on the

toilet or pull up the covers. We tried minocycline and Cipro and even the

tiniest amount would make me flare. About 8 months into my diagnosis and one

month into AP I found an alternative doctor who ran a western blot IgG and

it was positve for lyme disease. I had a whole lot of other pathnogens too.

We found a protocal for lyme disease that we thought we would try because

nothing else was tolerable....it was twice weekly intramuscular injections

of Bicillin. This was not a painful injection (but you mustn't look at the

needle because it is large and the injection takes a while -- like three

minutes -- to administer) it is given in the buttock area. For myself and

two other women in the clinic -- one with longstanding RA, the relief was

within two days. I had no herx and after two months of injections, I was so

much better and then I was able to tolerate oral macrolides (biaxin,

zithromax, cipro, doxy, yiou name it). the doctor only administers once a

week (not twice a week with same results) and that would be simplier for a

child. I understand why you took the steroid, but if possible try to stay

away from it because it allows the infectious cause to disseminate. Cod

liver oil and flax oil made a huge difference for me too. here is the

protocal for the bicillin (also the injections sidestep the GI system and

that is a benefit too....no GI consequences)

Finally, Lyme disease was first discovered by a group of mothers whose

children came down with JRA in Lyme conneticut. The mothers knew too many

of the children had JRA in the town and sought to discover the cause. Lyme

exists all over the world, in some parts of the world it is called tick

bite fever.

I am sending a link on the bicillin protocal in another post but here is the

short version of protocal.

Benzathine penicillin-

Surprisingly effective IM alternative to oral therapy. May need to begin at

lower doses as strong, prolonged (6 or more week) Herxheimer-like reactions

have been observed.

Adults: 1.2 million U once to twice weekly.

Adolescents: 300,000 to 1.2 million U weekly.

Should not be used in pregnancy.

Poorly studied but anecdotally effective

Good Luck. My prays are with you. kathy

Re: rheumatic My Introduction-long message

>Hi Teressa and sorry I haven't replied sooner. We have had a rocky couple

>of weeks and is going into hospital today to have steroid

>injections in her wrists and ankles. They are pushing for us to start the

>Methotrexate which we are stalling on, wanting to give the AP a chance.

She

>is on 250mg Erythromicin 3x daily and I wonder if that is a common

>antibiotic and/or dose to be on? She is losing too much movement though

in

>those areas and that is why we are trying the injections, to see if it

gives

>first, some relief and secondly, more range of motion. I have been

reading

>with interest the messages on here about Moducare. I have looked up a bit

>about what it is but wonder why if it has been around since 1998 people are

>just trying it now. Has it recently become available in the US maybe ...

I

>can't seem to get any leads on whether it is available in NZ and/or if it

is

>suitable for children. Any thoughts?

>

>How are things progressing for you. Please keep in touch and thank you for

>your concern.

>

>Caroline Stronge.

> Re: rheumatic My Introduction-long message

>>

>>

>> > Hi, my name is Caroline Stronge and I am new to the group. I have a 10

>> year

>> > old daughter diagnosed with RA, sero positive (RF of 500 odd!) in

>January

>> of

>> > this year. I have just started her on the AP under Dr. Chiu in

>> Wellington,

>> > New Zealand. I picked up on your comment that so long as you watch

>what

>> > you eat you do fine. I am trying some dietary changes for ,

>with

>> > much difficulty I might add as she is such a picky eater and I wondered

>> what

>> > things you add or avoid to keep well.

>> > If anyone else is reading this, I would love to be in contact with

>parents

>> > of children on AP.

>> > Keep the information rolling ...thank you.

>> > Caroline Stronge.

>>

>

>

>To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

>

[Guest guest]

I forgot to add that TESTING FOR LYME IS NOTORIOUSLY INACCURATE.....usually

a positive is a positive, but there are zillions of seronegative Lyme.

Basically, I was lucky to discover lyme, but I would encourage the protocal

irrespective of diagnosis, ie I would use it for RA or JRA since it is a

very beniegn protocal, very safe and if it works you should see results with

three weeks. kathy

Re: rheumatic My Introduction-long message

>

>

>>Hi Teressa and sorry I haven't replied sooner. We have had a rocky

couple

>>of weeks and is going into hospital today to have steroid

>>injections in her wrists and ankles. They are pushing for us to start

the

>>Methotrexate which we are stalling on, wanting to give the AP a chance.

>She

>>is on 250mg Erythromicin 3x daily and I wonder if that is a common

>>antibiotic and/or dose to be on? She is losing too much movement though

>in

>>those areas and that is why we are trying the injections, to see if it

>gives

>>first, some relief and secondly, more range of motion. I have been

>reading

>>with interest the messages on here about Moducare. I have looked up a

bit

>>about what it is but wonder why if it has been around since 1998 people

are

>>just trying it now. Has it recently become available in the US maybe ...

>I

>>can't seem to get any leads on whether it is available in NZ and/or if it

>is

>>suitable for children. Any thoughts?

>>

>>How are things progressing for you. Please keep in touch and thank you

for

>>your concern.

>>

>>Caroline Stronge.

>> Re: rheumatic My Introduction-long message

>>>

>>>

>>> > Hi, my name is Caroline Stronge and I am new to the group. I have a

10

>>> year

>>> > old daughter diagnosed with RA, sero positive (RF of 500 odd!) in

>>January

>>> of

>>> > this year. I have just started her on the AP under Dr. Chiu in

>>> Wellington,

>>> > New Zealand. I picked up on your comment that so long as you watch

>>what

>>> > you eat you do fine. I am trying some dietary changes for ,

>>with

>>> > much difficulty I might add as she is such a picky eater and I

wondered

>>> what

>>> > things you add or avoid to keep well.

>>> > If anyone else is reading this, I would love to be in contact with

>>parents

>>> > of children on AP.

>>> > Keep the information rolling ...thank you.

>>> > Caroline Stronge.

>>>

>>

>>

>>To unsubscribe, email: rheumatic-unsubscribeegroups

>>

>>

>>

[Guest guest]

Hi Caroline

I thought you were under Dr Chiu? He would surely have a clear idea of the

best approach to take with .

Gail

> From: " Stronge " <stronges@...>

> Date: Tue, 12 Jun 2001 13:00:53 +1200

> <Teressa.Inabinett@...>

> Cc: <rheumatic >

> Subject: Re: rheumatic My Introduction-long message

>

> Hi Teressa and sorry I haven't replied sooner. We have had a rocky couple

> of weeks and is going into hospital today to have steroid

> injections in her wrists and ankles. They are pushing for us to start the

> Methotrexate which we are stalling on, wanting to give the AP a chance. She

> is on 250mg Erythromicin 3x daily and I wonder if that is a common

> antibiotic and/or dose to be on? She is losing too much movement though in

> those areas and that is why we are trying the injections, to see if it gives

> first, some relief and secondly, more range of motion. I have been reading

> with interest the messages on here about Moducare. I have looked up a bit

> about what it is but wonder why if it has been around since 1998 people are

> just trying it now. Has it recently become available in the US maybe ... I

> can't seem to get any leads on whether it is available in NZ and/or if it is

> suitable for children. Any thoughts?

>

> How are things progressing for you. Please keep in touch and thank you for

> your concern.

>

> Caroline Stronge.

> Re: rheumatic My Introduction-long message

>>

>>

>>> Hi, my name is Caroline Stronge and I am new to the group. I have a 10

>> year

>>> old daughter diagnosed with RA, sero positive (RF of 500 odd!) in

> January

>> of

>>> this year. I have just started her on the AP under Dr. Chiu in

>> Wellington,

>>> New Zealand. I picked up on your comment that so long as you watch

> what

>>> you eat you do fine. I am trying some dietary changes for ,

> with

>>> much difficulty I might add as she is such a picky eater and I wondered

>> what

>>> things you add or avoid to keep well.

>>> If anyone else is reading this, I would love to be in contact with

> parents

>>> of children on AP.

>>> Keep the information rolling ...thank you.

>>> Caroline Stronge.

>>

>

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

>

[Guest guest]

Dear Karan,

Many in this group have not shown positive on tests for various organisms

but have still responded to the antibiotic therapy. If a patient showed

signs of rheumatic disease, Dr. McPherson Brown would start

antibiotic therapy straight away, regardless of whether tests showed up

any problem.

We have a list of doctors who offer antibiotic therapy if you would like

it.

Welcome to the group

Chris.

On Fri, 1 Jun 2001, Karan wrote:

> Hi, I'm new here. In the fall of 1999, I came down with a headache, upset

> stomach and diarrhea a couple hours after attending my grandfather's

> funeral. The next few days I had a slight headache and generally felt weak

> but was not to concerned. Then the fourth day after the funeral I woke up

> kind of stiff, went for a walk, stretched muscles and jogged some. That

> night the pain in my shoulder blade and back got really bad. I figured I

> must have pulled a muscle so I took some Naprozen and long hot baths and

> slept a lot for the next four days. The pain in my leg went away, but had

> intense pain in my neck, shoulder, and clavicle. Then I noticed that my

> left clavicle was swollen and hot to the touch. This scared the #$#@!! out

> of me. I thought I had a tumor or cancer. I saw my GP two days later. He

> said that I probably had a virus that was making my bones, muscles, and

> joints ache. He took blood for a complete fasting blood profile and gave

> me a prescription for Flexeril and Naproxen. The medicine helped with the

> stiffness, but I had muscle spasms in my back that woke me after 3-4 hours

> of sleep every night.

>

> I know it was madness, but my husband and I had been trying to conceive for

> 1 year and I was afraid of the side effects from the drugs, so I stopped

> all meds except 6-8 aspirin per day for pain when I thought I had a chance

> at conception. Over the next couple weeks, I started noticing pain in my

> right thumb and left foot. Both became very painful and swollen, had a

> hard time walking. I was in much pain and by then knew I wasn't pregnant

> so I started the Flexeril and Naprosyn. I was very depressed and cried

> easily.

>

> My GP finally got my blood profile results back and found that I had high

> C-reactive protein (49.7 mg/L) and sedimentation rate (107 mm/hr), low iron

> and RBC but was negative for RA. He suggested that I take vitamins and

> continue with the Naproxyn. I continued to have a lot of pain, depression,

> loss of appetite and weight. I stayed in bed almost 24 hours a day.

> Didn't sleep much because of the pain. It was painful to even roll over

> or get out of bed. I cried a lot and had suicidal thoughts. I dragged my

> carcass back to my GP and told him about my lack of sleep, intense pain,

> depression and weight loss. He gave me Darvocet for pain and Vioxx for

> arthritis symptoms. Well, the medicines worked great! I slept all night

> for the first time in weeks. It took just over one month to discover that

> I had arthritis at the age of 38 but now that I had drugs I felt I could

> deal with it.

>

> My GP recommend me to a rheumatologist in Birmingham, Dr. Holly Bastian.

> She switched me from Vioxx to Celebrex (200 mg 2x/day) which is basically

> the same thing, at least I remain fairly pain free with it also. She

> thinks I have Ankylosing Spondylitis (sero-negative RA) but is not sure.

> So far I don't think I have any permanent bone or joint damage. One toe

> on my right foot has remained enlarged but doesn't hurt much. If I miss

> one of my Celebrex pills, I pay for it later. The pain crops up mostly in

> my feet, ankles, hips, back and wrists. I don't have to resort to Darvocet

> very often, maybe once or twice a month when my work requires me to walk

> long distances and my feet can't take it.

>

> My husband and I have again been trying to conceive, without much luck. It

> has now been 2 1/2 years since the first arthritis flare-up episode. My

> fertility doctor says that my egg quality is poor, probably due to the

> arthritis. We are now considering adoption.

>

> I just happened to run across this web group that treats arthritis with

> antibiotics. I am very curious whether it could help me. I have an

> appointment with my Rheumatologist in 2 weeks so I have been making a

> collection of articles to present to her. I remember asking her before

> whether she thought what I had originated from some kind of bacterial

> infection. I have no family history of arthritis on either side of my f

> amily and my initial onslaught of the disease was cold or flu-like

> symptoms. She thought it likely, but said that it is virtually impossible

> to discover the actual pathogen and so therefore would not know how to

> treat it. She is a fairly young doctor, three years younger than me, and I

> hope I can convince her to at least try this therapy since it is relatively

> inexpensive and fairly harmless.

>

> If anyone in this group has had similar experiences or has a convincing

> collection or articles that backs up this treatment I would appreciate

> hearing from you. Sorry this is so long. Best wishes to all fellow

> sufferers,

>

> Karan

>

>

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

>

[Guest guest]

Hi Carolyn,

> Methotrexate which we are stalling on, wanting to give the AP a chance. She

> is on 250mg Erythromicin 3x daily and I wonder if that is a common

> antibiotic and/or dose to be on? She is losing too much movement though in

Erythromycin is usually used for children under twelve as it doesn't stain

the teeth. I know that the dose for a nine year old was 400mg Eryped

(liquid erythromycin) every day. Perhaps you might like to phone Dr.

Franco, a rheumatologist in Riverside, California, who is one of

the most experienced rheumatologists in the world with antibiotic therapy,

and who has treated many children. His phone number is US 909-788-0850.

Let us know how we can help,

Chris.