Questions

January 9, 2004

Re fruits - the sweeter it tastes, probably the higher up on the sugar scale

wouldn't you say?

Re: Questions

As for yorgurt - try to find goat yogurt. Yum. It is much more

digestible than yogurt made from cows milk. Really good stuff for

you. I often have this for breakfast, rotating with eggs and a green

drink I have. I'd be curious to hear more on millet as well.

Sometimes I treat myself to millet (whole milet cooked for 30min)

then topped with a few blueberries and flax seed oil.

>

> Firstly, thank you everyone for being so kind and patient with me.

Food

> is my life, and its so depressing having to think all the time about

> stuff I can't eat. So after I write this I'm going to go on a recipe

> hunt.

>

> I think I am starting to resign myself to do this diet

thing 'properly',

> although I'm still so confused on what 'properly' is. So I have some

> questions, if anyone could offer any information and/or experiences

I

> would appreciate it.

>

> 1. Anti-fungals, probiotics etc:

> I'm currently taking sporanox tablets, inner health plus capsules

and

> isodine pessaries. I'm also taking silica once a week and 'candida

> antibody' drops as prescribed by my doctor/homeopath. What's the

word on

> these? Unfortunately I can't afford to buy any other anti-fungals

and/or

> pre or probiotics right now, my fiancé and I are surviving on only

one

> income as we rotate studying and work, and money's pretty tight.

> I eat a lot of fresh garlic (lucky my fiancé likes garlic a lot!

as a

> natural anti-fungal - is there anything else this cheap?

>

> 2. Plain Yoghurt

> I thought this was an absolute yes, lots of good flora etc etc, but

its

> made from milk (and I have one really yummy greek style one that

also

> has cream in it) - ?

>

> 3. What can we eat?

> Thank you everyone for providing links to pages (which I'll go look

at

> now), but there does seem to be conflicting information everywhere I

> look on the net. The only consensus seems to be: meat and vegetables

> good. But then there's conflicting reports over which meats (I know

> processed, eg ham and bacon, are bad, which is such a shame).

> So what about nuts? My doctor/homeopath said cashews, almonds,

> macadamias and brazil nuts are good, peanuts, pistachios and

walnuts are

> bad (because they split and can grow mould. Having thought about her

> prescriptions for food, it seems she was concentrating more on what

> grows mould than on what converts to sugar. Eg she said corn and

> potatoes okay but no eg tinned tomatoes or dried herbs cos they

could be

> mouldy. Any thoughts?)

> Are there any vegetables (apart from mushrooms, which I've sadly cut

> out) that are deemed 'bad' someone said carrots were high in sugar,

> which is probably why they're my favourite vegetable snack (I don't

like

> any other vegetables raw). Also what does cooking vegetables do?

> Anything bad?

>

> 4. Grains

> Are any allowed? I was thrilled to find this beautiful breakfast

cereal

> that contained no sugar or dried fruit, but its ingredients are:

rolled

> barley, rolled oats and rolled triticale, sunflower kernels,

coconut,

> sliced almonds, linseed and sesame seeds (hence has LSA - something

> highly recommended to me by several naturopaths/doctors/homeopaths -

is

> there consensus on this? Apparently the combinations forms a

protein, or

> something?)

>

> So,

> 5. Breakfast

> So this cereal is 'bad'? If Vita-Brits (my other 'allowed' cereal)

is

> also a no-no, what does everyone eat for breakfast? Surely not plain

> eggs everyday? Toast and cereal are my standard breakfast items..

meat

> for breakfast seems strange (unless its bacon - mmmm, bacon -

what do

> you eat?

>

> 6. Carbohydrates

> Just wanted to check - no carbohydrates at all? So no potatoes,

corn,

> rice, pasta, yeast-free bread (which I managed to track down, and

even

> make myself!) etc?

> What about millet? My mum heard somewhere that it was good for

candida,

> not sure why (she reads a lot of silly women's magazines) so I

bought

> some millet flour to make bread with, figured it was better than

white

> flour. This is bad?

>

> Whew! Sorry that was so long. Thanks to everyone who managed to read

> through it and an even bigger thank-you to those who can help me

with

> some (or even all!) of it.

>

> Best Wishes,

>

> Nice . (Its morning here now. I always feel better in the

> mornings)

>

> ---

> Outgoing mail is certified Virus Free.

> Checked by AVG anti-virus system (http://www.grisoft.com).

> Version: 6.0.529 / Virus Database: 324 - Release Date: 16/10/2003

January 9, 2004

That sounds nice - thanks

Unfortunately the problem is not really sugar withdrawals (esp. as I'm

still technically eating fruit and have discovered stevia) but how to

fill myself up. I don’t like salads and if I cant eat carbs it looks

like I'm eating meat and veg for every meal - boring and expensive..

Re: Re: Questions

- Here's something that might help get through the

sugar-withdrawl

hump.

Buy some plain yoghurt and strain it through cheesecloth in the fridge

overnight. You'll end up with something the consistency of cream

cheese.

Add a few drops of vanilla extract and sweeten to taste with Stevia.

Yum.

January 9, 2004

Ya, probably not so good. It’s fruit sugar, and concentrated at that. I

wouldn’t recommend it. When I cheat, I try to stick with whole foods.

Re: Questions

As for yorgurt - try to find goat yogurt. Yum. It is much more

digestible than yogurt made from cows milk. Really good stuff for

you. I often have this for breakfast, rotating with eggs and a green

drink I have. I'd be curious to hear more on millet as well.

Sometimes I treat myself to millet (whole milet cooked for 30min)

then topped with a few blueberries and flax seed oil.

>

> Firstly, thank you everyone for being so kind and patient with me.

Food

> is my life, and its so depressing having to think all the time about

> stuff I can't eat. So after I write this I'm going to go on a recipe

> hunt.

>

> I think I am starting to resign myself to do this diet

thing 'properly',

> although I'm still so confused on what 'properly' is. So I have some

> questions, if anyone could offer any information and/or experiences

I

> would appreciate it.

>

> 1. Anti-fungals, probiotics etc:

> I'm currently taking sporanox tablets, inner health plus capsules

and

> isodine pessaries. I'm also taking silica once a week and 'candida

> antibody' drops as prescribed by my doctor/homeopath. What's the

word on

> these? Unfortunately I can't afford to buy any other anti-fungals

and/or

> pre or probiotics right now, my fiancé and I are surviving on only

one

> income as we rotate studying and work, and money's pretty tight.

> I eat a lot of fresh garlic (lucky my fiancé likes garlic a lot!

as a

> natural anti-fungal - is there anything else this cheap?

>

> 2. Plain Yoghurt

> I thought this was an absolute yes, lots of good flora etc etc, but

its

> made from milk (and I have one really yummy greek style one that

also

> has cream in it) - ?

>

> 3. What can we eat?

> Thank you everyone for providing links to pages (which I'll go look

at

> now), but there does seem to be conflicting information everywhere I

> look on the net. The only consensus seems to be: meat and vegetables

> good. But then there's conflicting reports over which meats (I know

> processed, eg ham and bacon, are bad, which is such a shame).

> So what about nuts? My doctor/homeopath said cashews, almonds,

> macadamias and brazil nuts are good, peanuts, pistachios and

walnuts are

> bad (because they split and can grow mould. Having thought about her

> prescriptions for food, it seems she was concentrating more on what

> grows mould than on what converts to sugar. Eg she said corn and

> potatoes okay but no eg tinned tomatoes or dried herbs cos they

could be

> mouldy. Any thoughts?)

> Are there any vegetables (apart from mushrooms, which I've sadly cut

> out) that are deemed 'bad' someone said carrots were high in sugar,

> which is probably why they're my favourite vegetable snack (I don't

like

> any other vegetables raw). Also what does cooking vegetables do?

> Anything bad?

>

> 4. Grains

> Are any allowed? I was thrilled to find this beautiful breakfast

cereal

> that contained no sugar or dried fruit, but its ingredients are:

rolled

> barley, rolled oats and rolled triticale, sunflower kernels,

coconut,

> sliced almonds, linseed and sesame seeds (hence has LSA - something

> highly recommended to me by several naturopaths/doctors/homeopaths -

is

> there consensus on this? Apparently the combinations forms a

protein, or

> something?)

>

> So,

> 5. Breakfast

> So this cereal is 'bad'? If Vita-Brits (my other 'allowed' cereal)

is

> also a no-no, what does everyone eat for breakfast? Surely not plain

> eggs everyday? Toast and cereal are my standard breakfast items..

meat

> for breakfast seems strange (unless its bacon - mmmm, bacon -

what do

> you eat?

>

> 6. Carbohydrates

> Just wanted to check - no carbohydrates at all? So no potatoes,

corn,

> rice, pasta, yeast-free bread (which I managed to track down, and

even

> make myself!) etc?

> What about millet? My mum heard somewhere that it was good for

candida,

> not sure why (she reads a lot of silly women's magazines) so I

bought

> some millet flour to make bread with, figured it was better than

white

> flour. This is bad?

>

> Whew! Sorry that was so long. Thanks to everyone who managed to read

> through it and an even bigger thank-you to those who can help me

with

> some (or even all!) of it.

>

> Best Wishes,

>

> Nice . (Its morning here now. I always feel better in the

> mornings)

>

> ---

> Outgoing mail is certified Virus Free.

> Checked by AVG anti-virus system ( http://www.grisoft.com).

> Version: 6.0.529 / Virus Database: 324 - Release Date: 16/10/2003

January 9, 2004

hi ,

I must say that when I first started rearranging my diet I was a hater

of fruit, salad and vegetables. But there are amazing things out

there to do to your salads!

Salad dressing: olive oil and lemon. sometimes I put herbs in there

like fennel or basil and oregano - Mrs. Dash. Safflower oil, sea

salt and cinnamon for an interesting taste. NUTS! ooh yeah - they

are good too! And sea weed; wakame or kelp. Stay away from dulse

right now - you probably wont like it yet.

Just today I had a wicked salad: romain lettuce with poached scallops,

shrimp, peas, broccoli and egg plant. - the dressing was olive oil,

lemon and caraway. oooh soooo goood! Tuesday for lunch I had

spinach, romain, suey choy and then I baked eggplant, onion and tomato

with some olive oil! Good lord I almost died and went to heaven, it

was so good. Lots of flavor in this! There is no boring in my

salads. ** I don't ever buy ice berg lettuce and cucumbers anymore

because that is all you get in restaurants! And I usually (if I know I

will be eating out), I will carry a zip lock bag filled with seeds,

nuts, sea weed and seasoning to pour on top of those lame restaurant

salads.

Oh yeah, canned tuna and salmon are great too! But make sure they are

sodium free. )

Simon wrote:

>That sounds nice - thanks

>Unfortunately the problem is not really sugar withdrawals (esp. as I'm

>still technically eating fruit and have discovered stevia) but how to

>fill myself up. I don’t like salads and if I cant eat carbs it looks

>like I'm eating meat and veg for every meal - boring and expensive..

>

> Re: Re: Questions

>

> - Here's something that might help get through the

>sugar-withdrawl

>hump.

>

>Buy some plain yoghurt and strain it through cheesecloth in the fridge

>overnight. You'll end up with something the consistency of cream

>cheese.

>Add a few drops of vanilla extract and sweeten to taste with Stevia.

>Yum.

>

January 9, 2004

OMIGAUD Penny! that is soooooo goood. When I first ate this, I

cried, knowing I couldn't have it all the time - so I could enjoy it.

Penny wrote:

> - Here's something that might help get through the

> sugar-withdrawl

> hump.

>

> Buy some plain yoghurt and strain it through cheesecloth in the fridge

> overnight. You'll end up with something the consistency of cream cheese.

> Add a few drops of vanilla extract and sweeten to taste with Stevia. Yum.

>

January 9, 2004

So why can't you have it all the time? Other than the fact that it probably

has a gazillion calories in it. (I thought when I went on this regimen

months ago that one of the side benefits would be some weight loss. Ha! As

usual, I have to watch the waistline.)

But seriously, I must have missed something - is yogourt a no no? (Oh

please say it isn't so - I just waved bye bye to cashews yesterday)

January 9, 2004

> But seriously, I must have missed something - is yogourt a no no?

(Oh

> please say it isn't so - I just waved bye bye to cashews yesterday)

My holistic doctor said the benefits of plain unsweetend yogurt

(because it fights yeast) far outway the drawbacks it may have

because it's a diary product. I wouldn't do it every day but I eat it

maybe once a month with some stevia/vanilla in it.

Ellen

January 24, 2004

hi everyone

could some one please tell me about the ESR and CPR levels like what is

normal and what is considered to be high and also how high is really bad??

also an update to hubby is he is now on 2 x 10mg of MTX a week now and in 4

weeks he will reduce the prednisone from 10mg a day to 7.5mg a day.

his rhuemy also said that taking OMEGA OILS (in tablet form) may also help

with the inflamation as they are also a slight anti- inflamitory. we wonder

if anyone here has tried this and if so what the results were??

also we have been told by family member who has OA (possibily PA as well)

that she has found that glucosomine tablets are also good has anyone tried

these too??

feed back would be much appreciated

thanx

ruby and gary

_________________________________________________________________

Hot chart ringtones and polyphonics. Go to

http://ninemsn.com.au/mobilemania/default.asp

January 31, 2004

Everything you mention is lyme related. Please find a LLMD they are the only

ones who really know how to treat it. I had it for yrs before treatment. IT will

take many yrs, months,etc for her to feel better. you must go to a LLMD. Where

do you live?

[ ] Questions

My daughter is 5 years old she is 40 inches tall and 35lbs. She is so

tiny! so much smaller than her brothers at this age.

So, this is breaking my heart. My daughter got sick over the holidays

I thought the flu...we all were so sick .she caught it on 12/25 and

again, yes she got sick with the flu twice.

Never really recovering, staying tired fever off and on. by 1/5

complaining her legs hurt. i saw nothing wrong with her i told her to

stop being a baby and go to school.. by 1/6 she could not walk went

for xrays they were neg. and it was late ,i do have 3 other children

they needed to eat and go to bed

so home we went she had a horrible night no sleep...me no sleep

by 8 am she was screaming and crying in pain...carried her back to

the dr both of us in tears now my daughter who crawled at 4 months

and walked at 8 months and is little but can take on her 10 year old

brother is curled up in a fetal position not able to talk.

So dr sees her sends us to childrens hospital..we are told she has

some form of arthritis and they do lots of tests she has a terrible

UTI send us home with wait for the test results and take antibiotics

{. so now 2 weeks out today is 1/21 she still has the UTI its caused

by a strep and e-coli bacteris and they tell me that her lymes tests

came back positive, the PCR, E-LISA, and WESTERN BLOT all came back

positive.

so went to library today no book there..feeling a little over whelmed

and lost So is lymes treatable with antibiotics and when will I get

my daughter back?

she is alittle beter but not back to normal we are seeing a

Rhuemtiodoligist..ok cant spell that one on the 3rd of Feb anyone

else I should ask to see? Also she never had a tick to my that <--

wait now that I think of it almost 2 years ago she had a tiny tick<--

I know of I am her only care taker..hubby not around and do not use

babysitter..yes I have no life..lol

never a rash or anything until this so this means that it has gone

undetected for how long? over the summer she became constipated and

we have had problems ever since..is this from that too?

My question is what credentials should and what makes a LLMD?

What makes a LLMD different from my pediatrician?

What about health insurance?

this DR is out of network and I'm just going to pay for it myself but

if things continue or get worse I will not be able to afford that.

What important questions should I ask? both the Drs. and Ins? What

are some of the things you all wish someone would have told you or

thought about asking in the beginning?

I went to the county library and the only book they have was out

Lyme the cause, cure and controversy? I think that was the title? it

was out and not due back until the 2/14 .

Any of you read a book? Have the title handy? Would love to read up

on lyme disease. I'm not really ready to accept that my daughter has

this.

I read only on-line that there is no test that says YES you have

lyme...its a process of elimination and if they say your western blot

came back positive... something else could have made that happen

I'm at a disadvantage knowing nothing of this disease and not having

her records in front of me ...by the way calling for all her records

on Monday.

so far not being able to get any really hard copy proof of

anything other than my pediatrician telling me to have her take amx

for 2 more weeks and see the Rhuemitolighst.

spelled that wrong and spell check doesn't know it and to lazy to

look it up right now forgive me. Just confused.

Also let me add today 1/30 maggie has been saying her hands were

stinging and putting cold water on them. now tonight they are red and

slightly swollen. they look fire red and tight..like the skin is

tight... do any of you ever have this is this related to lyme?

Help ???

January 31, 2004

Sorry the last post was so fuzzy it was a bunch of emails/dairy of

maggies condition and some of my questions. for the last 2 weeks.

Went to the pediatrician today about her hands he told me to tell it

to the rhuemitoligst. Ugh..just some answers.

Asked about seeing an ID Dr. he said ask the rhuemitoligst.

So I live in NJ driving is no problem. I'll go anywhere to make sure

my daughter is OK. cost is an issue but, not my main concern right

now.

Was going to see a LLMD in Hammolton, NJ but canceled it because I

heard he doesn't treat young children.

also how do i convince my Drs. to refer me to a llmd? and how do I

get info about a llmd who treats young children? and how do I get the

ins to pay for it?

and how do I know I'm not an overreacting mother driving the Drs.

nuts? and school what about school? right now her teacher is

wonderful!! but next year she will be in real school Kindergarden.

She is in D-K now provided by the district.

ANY SUGGESTIONS ARE WONDERFUL.

I THANK YOU FOR BEING MY SOUNDING BOARD. JUST FOUND A SUPPORT GROUP

THAT MEETS NEAR WHERE I LIVE BUT THEY ONLY MEET ONCE A MONTH I WILL

GO IN FEB!

February 1, 2004

,

Since you don't have access to the book from the library, I have enclosed

here a copy of a couple of an article that I had filed. Maybe it will give

you some information to get you started. Because we don't attach any files

in this group, I have copied and pasted the article here, so caution, this

is a very long message!

Carol

50 Lyme Q & A - by Ginger Savely, N.P., ILADS

1. Is Lyme disease caused by a virus, bacteria, or a parasite?

Lyme disease is caused by a spirochetal bacteria.

2. Who is the doctor that identified the spirochete that causes Lyme

disease?

Dr. Willie Burgdorfer identified the spirochete responsible for Lyme disease

(Borrelia burgdorferi) in the early 1980s.

3. How long after a person is in contact with an infected source will Lyme

disease symptoms appear?

Lyme disease symptoms may appear days, to weeks, to months, to years after

the initial infection.

4. How many species of ticks carry the Lyme disease spirochetes? List three

species of ticks found. Approximately how many species of fleas, mites,

mosquitoes, or flies how been found to carry the Lyme disease spirochete?

At least nine species of ticks, six species of mosquitoes, 13 species of

mites, 15 species of flies, two species of fleas, and numerous wild and

domestic mammals including rabbits, rodents, and birds have been found to

carry the spirochete that causes Lyme disease.

5. Does a 'bulls-eye' rash go away without treatment?

A Lyme rash (EM -or- ECM) will often disappear on its own without treatment,

but it may linger for quite some time. It may reappear later as a single

rash, or emerge later as multiple rashes, or it may appear in a different

location on the body.

6. Does a Lyme rash occur at the site of the bite or elsewhere?

The ECM rash may appear at the site of the tick bite or elsewhere on the

body. Not everyone will get a rash and some will have multiple rashes.

7. If prescribing doxycycline for a tick bite, what precautions should be

advised while taking the medication?

Patients should be advised that taking doxycycline may cause sun

sensitivity. . Doxycycline is not recommended for children under 8 since it

may cause discoloration of their teeth. Doxycycline may also promote yeast

and fungal overgrowths which should be addressed. Nausea, vomiting, and

diarrhea are some of the possible side effects of Doxycycline. Birth control

pills may not be as effective while taking Doxycycline and additional

precautions to prevent pregnancy may be necessary. Doxycycline should not be

taken with antacids or supplements that contain calcium, iron, magnesium, or

sodium bicarbonate. Doxycycline use may cause liver problems or bruising.

People taking Doxycycline should be advised that severe allergic reactions

may occur and if there are any problems while taking Doxycycline, they

should be reported to the doctor.

8. List five tick borne diseases that can be passed to humans by a tick.

Lyme Borelliosis, Babesia Microti, Bartonella Henslea, Bartonella Quintana,

Rocky Mountain Spotted Fever, Brucellosis, Ehrlichia HGE, Ehrlichia HME,

Southern Tick-Associated Rash Illness (STARI), Tularemia (rabbit fever)- and

possibly Leptospirosis are some of the tick borne illnesses that may be

passed to animals or humans.

9. If a patient has previously had Lyme disease and is bitten by another

infected tick, are they immune to Lyme disease?

No, they are not immune. In fact, multiple bites may expose people to a

number of other tick borne diseases in addition to new strains of Lyme

disease.

10. Is a lumbar puncture required to confirm Neuro Lyme? Why?

No. Lyme disease, as stated by the CDC, is a 'clinical diagnosis'. Research

indicates that less than 20 percent of those with Lyme disease have shown a

positive reading in the spinal fluid.

11. List five of the most common diseases that are often mistaken for Lyme

disease.

There are many different diseases or conditions that are found in patients

with Lyme disease. All too often Borellia organisms are not being considered

as the cause for patient's complaints, signs, and symptoms. For example, an

Ophthalmologist may diagnose any of the following conditions:

conjunctivitis, ocular myalgias, keratitis, episcleritis, optic neuritis,

pars planitis, uveitis, iritis, transient or permanent blindness, iritis,

photophobia, temporal arteritis, vitritis, Horner's syndrome, ocular

myasthenia gravis, or Argyll-on pupil. All of the conditions listed

have been documented in Lyme disease patients and many of these diseases or

conditions improve with proper antibiotic therapy. Urologists, for example,

may not realize that recurring bladder infections or swollen testicles are

being caused by spirochetal organisms. Infectious disease specialists often

dismiss patients concerned about Lyme disease because many are under the

assumption that Lyme disease is very 'rare', and/or they are not familiar

with the various signs and symptoms of Lyme disease.

Lyme disease is often misdiagnosed as:

Chronic Fatigue Syndrome, Multiple Sclerosis, Alzheimer's, Parkinson's

disease, Lupus, Lou Gehrigs (ALS) disease, Guillian-Barre Syndrome,

Polymyositis, Hepatitis, Cardiac Disorders, Fibromyalgia, TMJ, Ringworm,

Tullio Phenomenon, Encephalitis, ADD, ADHD, Meningitis, Depression, Panic

Disorders, Bells Palsy, Candidiasis, Chronic Mononucleosis, Hypoglycemia,

Scleroderma, Epstein Barr Virus, Heart Disorders, Autoimmune diseases,

Bannwarths Syndrome, Cancers, Kidney disease, Raynauds Syndrome,

Stress-related Illness, Sleep Disorders, Thyroid problems, Vasculitis,

Anorexia, Agoraphobia, Cerebrovascular Disorders, Arthritis, Connective

Tissue diseases, Hearing Disorders, Crohns disease, Purpura, Pseudotumor,

Sjogrens Syndrome, Stroke, and Respiratory Insufficiency.

12. If a person has an EM rash and a negative ELISA test, should they be

treated? How?

Yes. An ECM rash is diagnostic for Lyme disease. Current guidelines approved

by ILADS (International Lyme and Associated diseases Society) recommend oral

therapy for at least 6 weeks for both adults and children when a rash is

present. Lyme patients who are pregnant have special guidelines to help

protect themselves and their unborn child. According to the CDC, Lyme

disease is a 'clinical diagnosis' and negative tests are not to be used to

rule out the disease.

13. List the studies you have read by any of the worlds leading Lyme disease

experts. Where can a patient go to be enrolled in a current Lyme study?

There are over 15,000 published medical studies, abstracts, videos, and

general brochures concerning Lyme and other tick borne illnesses. Physicians

may request assistance and information from ILADS, the International Lyme

and Associated diseases Society. There are a number of ongoing Lyme disease

studies, such as the four year study being conducted Dr. B. Fallon, which is

being funded by the NIH. The results of the chronic Lyme disease study by

Dr. Donta were recently released.

14. How many different strains of the spirochetes that cause Lyme disease

have been identified to date in the United States and world wide?

Eight different species and over three hundred strains of spirochetes that

cause Lyme disease symptoms have been identified world wide. To date, more

than 100 different strains have been identified in the United States.

15. What is STARI?

STARI is a strain of spirochete that was 'discovered' in the southeastern

sections of the United States within the past few years. It causes Lyme-like

symptoms but is not normally detected by the current standard Lyme tests. ST

ARI (Southern Tick-Associated Rash Illness)

16. What is WA-1?

WA-1 is a newly identified strain of Babesiosis which has been found in a

number of people who are also infected with Lyme disease. There have been

new tests developed to identify this specific strain in humans but the tests

are not performed at all labs. To test for this strain of Babesiosis,

physicians should have blood sent to specialty labs, such as Igenex Lab in

CA.

17. Approximately how many Lyme disease patients are co-infected with

Babesiosis (in land, USA?) What is the most effective treatment for

Babesiosis?

Estimates from labs, support group leaders, and doctors offices indicate

that approximately 25-50 percent of patients with Lyme disease in land

are also are co-infected with Babesiosis. Unfortunately, many patients are

never tested so the numbers may be even higher. A combination of

Atovaquone(Mepron-750 mg. 2x daily) and Azithromyacin (Zithromax- 250 mg

day) is considered to be the best treatment for Babesiosis. Some patients

who were untreated for long periods may need extended treatment or may need

to be retreated if symptoms return. This treatment protocol is less toxic

than the quinine sulfate and clindamycin combination that was once used and

there are fewer side effects reported.

18. What percentage of people with Lyme disease remember having a rash or

remember being bitten by a tick?

Various studies show that anywhere from 20-80 percent of seropositive Lyme

disease patients with active symptoms do not recall a rash. Less than 50

percent of Lyme disease patients remember being bitten by a tick.

19. After a person is bitten by a tick, how soon is it before the spirochete

can be found in the spinal fluid?

Reports indicate spirochetes can disseminate quickly throughout the system

(in as little as 6 hours in some cases). In addition, spirochetes are able

to change forms and remain undetected in the spinal fluid. The old 'wait and

see' if symptoms appear before treating theory allows the organism to go

unchecked, causing multiple problems and decreasing the patient's chance for

a full recovery.

20. What signs and symptoms would lead a doctor to suspect a Babesia

infection in a patient? How many strains of Babesiosis have been identified

and how many are commonly tested for in commercial labs?

The following signs/symptoms may be present in those infected with

Babesiosis: Fatigue * Arthralgias* Myalgia* Drenching sweats* Headaches*

Emotional lability* Depression* Dark urine* Splenomegaly* Dizziness* Nausea

and vomiting* Cough* Dyspnea* Fever* Chills* Hepatosplenomegaly* Jaundice*

Malaise* Shortness of breath* Bleeding tendencies, bruising*

Thrombocytopenia* Hemoglobinuria* Hyperesthesia* Pulmonary

edema*Encephalopathy* Low to normal range leukocyte counts* Possible

elevated levels of dehydrogenase, bilirubin, trans-aminase* Anorexia*

Approximately 25%- 66% of Babesia patients are known to be co-infected with

Lyme disease. These symptoms may continue for long periods of time,

decrease, then return. A low Babesiosis titer (IgG) often indicates a

chronic infection. An acute or current in-fection may show a higher reading

on an initial IgM test. There are over 100 species of Babesia in the United

States but only ONE or TWO species are currently checked by commercial labs.

21. Describe the rash seen in patients with Lyme disease and two of the most

common variations of that rash.

There is no 'typical rash' that all patients get when infected with Lyme

disease. Many people do not remember a rash or even a tick bite. If a rash

does appear, it may be anywhere from a light pink color to blazing red, to

blue, to purple depending on the skin color, the type of rash, and possible

co-infections. The ECM rash can be as small as a quarter, be present in

several locations, or be large enough to cover the entire back of an adult.

The rash may be mistaken for an insect bite reaction or even ringworm. It

may be hot, it may flake or swell. It may be well formed and expanding or

have uneven or raised edges. It may disappear and return later and it may be

slightly itchy in some individuals. Borrelial lymphocytoma may appear on the

earlobe, the scrotum, or on the nipple of the breast. It may be bright red

to a bluish color and may disappear and return later. The ACA rash

(acrodermatitis chronica atrophicans) may have the appearance of a

scleroderma rash and is often noticed on the feet and ankles and/or the

hands. It may appear elsewhere on the body and may affect organs.

22. Describe the rash seen in patients with Babesiosis.

Many patients infected with the Babesia organism do not present with a rash,

however, they may appear jaundiced and some may have a petechial rash.

23. Describe the rash seen in patients with Bartonella.

The rash/lesion that is typically associated with Bartonella may not be

present in patients or may not be noticed. If there is a rash/lesion, it may

appear to be a small reddish brown lesion (often mistaken for an insect

bite). It may heal without intervention. The patient exposed to Bartonella

may have urticaria, vesiculopapular lesions, or erythema nodosums. Many

Bartonella patients have swollen and/or tender lymph nodes which may become

infected.

24. How do you test for and treat (which drugs) the 'cyst' form or 'L' form

of the Lyme disease?

Specific tests have been developed to identify some of the various forms of

spirochetes using dark field microscopes. Flagyl, which has been shown to

burst the cell walls of the cyst form, is currently being prescribed to

patients. Normally it is prescribed along with other antibiotics, since

Flagyl alone is not effective on the intact spirochetes.

25. What has the CDC determined to be the proper testing procedure for

confirming that a patient does or does not have Lyme disease?

TRICK question- The CDC states emphatically that Lyme tests are NOT to be

used to exclude a diagnosis of Lyme disease. A negative test is NOT to be

considered absolute by any means... nor is it to be used to indicate a cure.

As the CDC states, Lyme disease is a 'clinical diagnosis'. No test has been

developed that can confirm a patient is 'cured' of Lyme disease.

26. What is the two tier testing procedure set up by the CDC for testing

patients suspected of having Lyme disease and what are the most common

problems with this procedure?

Doctors have been instructed (CDC guidelines) to obtain an ELISA (titer)

first, which, under the best circumstances, only identifies 40-50 percent of

those who actually have Lyme disease. An ELISA should NOT be used as a

screening test due to the unreliable results. The guidelines state, if the

ELISA is positive, physicians are to perform a Western Blot test which,

under the best circumstances, only identifies 70-80 percent of those who

have been exposed. Most labs do not report specific bands on the Western

Blot tests, hindering the experienced physician and the diagnosis even

further. This procedure allows many cases of Lyme disease to be missed,

therefore, patients are not being identified or properly treated. The CDC

guidelines also state which specific bands on a Western Blot are to be used

to consider a test positive. When the list was developed, certain bands

specific for Lyme disease, were not included. When these bands are positive,

it confirms exposure, but it is mistakenly reported to the doctor and

patient as a 'negative test'. Many 'borderline tests' are reported to

patients, by the physician, as being negative and many positive tests are

reported to be 'false-positive' because physicians are not familiar with

reading test results, nor with the multiple symptoms that can occur in a

person with Lyme disease, and the connection between the two is missed.

Many patients who have chronic Lyme disease will have low titers or

seronegative results.

27. Which bands normally show up first on a Western Blot test? Which bands

are specific for Lyme disease? Which bands normally appear after the patient

has had Lyme for at least one year?

The first Western Blot band to show positive is normally the 41KD band

followed intermittently by the 23KD band. Bands 18KD, 23-25KD, 31KD, 34KD,

37KD, 39KD, 83KD and 93KD are specific for indicating Bb exposure. The

problem is they may not show up early in the infectious stages or may not

appear for a year or more, or they may not show up at all. The ILADS 2002

Guidelines state that the presence of the 41KD band along with one of the

specific bands listed above indicates a person has been exposed to Lyme

disease.

28. List reasons why a Lyme test may not be accurate.

1. Antibiotic use prior to testing

2. Patient has been on steroids or cancer drugs

3. Antibodies are bound by bacteria

4. Immuno supression

5. The bacteria has shifted forms

6. Lab standards for cut off are too high

7. The test was performed too early or before antibodies had a chance to

form

8. Bands checked are for reporting purposes, not for clinical diagnosis

9. Poor lab used that does not specialize in tick borne illnesses

10. Contamination of specimen

11. Various strains are not identified using standard tests

29. Can bismuth be used for Lyme patients?

Studies have shown that bismuth will penetrate Borellia cyst walls.

Intestinal problems are especially common in children with Lyme disease and

bismuth compounds may eventually prove to be effective in treating the cyst

form of the bacteria in the intestines.

30. What are the symptoms of Bartonella, what is the standard treatment for

Bartonella, and how long should a person be treated?

Common symptoms of Bartonella include fatigue, swollen lymph nodes,

encephalopathy, headaches, cognitive dysfunction, rash/lesions, vision

problems, numbness, and tingling. Reports indicate Doxycycline may be

effective in treating Bartonella. Rifampin has also been used in

combination with Doxy, but is not as successful alone. Several other

antibiotics have been reported to be successful in Bartonella treatment.

Antibiotics have occasionally been used for over a year to attempt to

eradicate the persistent bacteria.

31. If a patient is infected with Lyme, Babesiosis, and/or Ehrlichiosis,

which infection should be treated first?

In co-infected patients, treating Babesia first has been proven to be more

effective, however, in acute situations, treatment for all infections should

be considered.

32. Where would you send blood and tissue samples to have the best available

tests done on Lyme patients?

Igenex Lab in California performs a variety of tests for tick borne diseases

(PCR, urine tests- DOT, RWB- Reverse Western Blots, Lyme, Babesia, Erhiclia,

and Bartonella). Igenex reports all WB bands, providing more factual results

in the clinical setting. Bowen Lab in Florida is licensed to perform tests

in which spirochetes in various forms can be detected and photographed from

Babesia and Ehrlichiosis. MDL Lab in NJ is also used by many physicians

treating Lyme patients.

33. What is a 'Lyme Dot'?

Lyme Dot is a urine test performed by Igenex Lab which detects spirochete

residue in urine samples.

34. What is an ACA?

ACA (acrodermatitis chronica atrophicans) is a skin rash normally seen in

patients with late stage Lyme disease which is usually attributed toBorrelia

afzelii. It is sometimes mistaken for scleroderma. The ACA rash indicates

ongoing chronic infection.

35. What is a Herxheimer reaction?

Jarisch-Herxheimer's reactions often occur during antibiotic therapy for

spirochetal infections and may be fatal in some cases. A 'herx' occurs when

the spirochetes die off and produce toxins. Symptoms may become much worse

during the reaction. Due to the replication cycle of the spirochete,

treatment for Lyme should continue for several months after all

Jarisch-Herxheimer reactions have ceased and all symptoms have cleared or

the patient is likely to relapse.

36. How does prednisone help the Lyme patient?

Trick question- NEVER take steroids if Lyme disease is even suspected!

Steroids suppress the immune system which allows the spirochetes a non

challenged place to multiply. Many people who now suffer with chronic cases

of Lyme disease were given steroids and are now chronically ill, disabled,

or have died.

37. Approximately how many Lyme and Babesia cases are reported (in land,

USA)?

At this time, Babesia cases are not reportable in land. land ranks

sixth in the nation for the most cases of Lyme disease. There were over

4,000 cases reported in land in the 1990's. It is estimated that this

figure should be at least ten times higher, therefore, about 40,000 cases

are suspected. Consequently, over 30,000 cases were missed. Since some Lyme

patients are treated 'clinically', blood tests are not always ordered. This

reduces the actual number of reported Lyme disease cases.

38. Since Lyme is a multi-systemic disease, list 20 of the over 150

documented signs, symptoms, or indications that someone may have Lyme

disease?

Lyme disease can have a wide range of symptoms, which can go dormant

(sometimes for years), can migrate, return, disappear, or change day by day.

Symptoms can be aggravated by stress, medications, weather, and other

outside influences. Symptoms may tend to worsen on a four week peaking

cycle. SOME of the symptoms that may be found in those with Lyme disease

include: Flu-like symptoms, headaches (mild to severe), recurring low grade

fevers or fevers up to 104.5 degrees. Usually in the first few weeks of Lyme

disease fevers tend to be higher. (Patients with Lyme disease often tend to

have a " normal temperature " below 98.6 degrees, therefore, a slight rise in

temperature may be all that is noted.) Often patients exhibit fatigue (mild

to extreme), joint pain (with or without swelling), muscle pain, connective

tissue pain, recurring sore throat (sometimes only on one side of the

throat), swollen glands (come and go), varying shades of red on ear lobes

and pinna, malar rash, cold hands and feet in a warm environment, weakness,

lightheadedness, eczema and psoriasis, painful or itching skin, flushing,

night or day sweats, inordinate amounts of sweating, anhydrosis (inability

to sweat), or dermatitis (acrodermatitis chronica). There may be a rash, but

it isn't noticed or does not appear in all cases. The rash may be basically

circular with outward spreading, however, other varieties are seen. The rash

may be singular or multiple, at the site of a bug bite, or in another

location, warm to touch, or slightly raised with distinct borders. In dark

skinned individuals the rash may appear to be a bruise. Numbness, sleep

disturbances, vertigo, hearing loss, feelings of being off-balance,

unexplained weight gain or loss, and feeling " infected " are also problems

associated with Lyme disease. Symptoms may develop that include: panic

attacks, anxiety, depression, mild to severe cognitive difficulties, mood

swings, coma, seizures, dementia, mania, biploar disorders, vivid

nightmares, stammering speech, confusion, memory loss (short or long term),

" brain fog " , vibrating feeling in head, topographical disorientation, and

environmental agnosia. Some patients have problems with numbers and

sequencing, disorganization of thoughts, rambling on in great detail while

talking, frequent errors in word selection or pronunciation, changes in

personality, short attention span, Tourette manifestations, OCD (obsessive

compulsive disorder), raging emotions, and cranial nerve palsies. Patients

have reported bladder disfunction (neurogenic bladder with either hesitancy,

frequency, loss of bladder awareness, urinary retention, incontinence or

symptoms of UTI, and chronic pyelonephritis). Intersitial cystitis,

irregular or severe menstrual cycles with decreased or increased bleeding,

early menopause, a new onset of P.M.S. symptoms, or disturbed estrogen and

progesterone levels are documented in many cases. Other problems include

altered pregnancy outcomes, severe symptoms during pregnancy, abdominal

bloating, irritable bowel syndrome, abdominal pain and cramping (may appear

to be ulcers), loss of sex drive, testicular or pelvic pain, breast pain,

and fibrocystic breast disease. Diarrhea (which can come and go or last for

months with no explanation), constipation (which can be severe enough to

cause blockage), irritable bowel syndrome, spastic colon, nausea, stomach

acid reflux, gastritis, abdominal myositis, and indigestion are some of the

gasto-intestinal disorders reported. In addition, patients demonstrate a

higher occurrence of various types of cysts (liver, breast, bone, ovary,

skin, pineal gland and kidney). Some Lyme patients are diagnosed by their

eye care professionals and have been documented as suffering from one or

more of the following disorders: conjunctivitis, ocular myalgias, keratitis,

episcleritis, optic neuritis, pars planitis, uveitis, iritis, transient or

permanent blindness, iritis, photophobia, temporal arteritis, vitritis,

Horner's syndrome, ocular myasthenia gravis, and Argyll-on pupil.

Often eye problems require a changing of prescription glasses more often

than normal. Heart-related problems are associated with Lyme disease and can

include: mitral valve prolapse, irregular heart beat, ocarditis,

pericarditis, enlarged heart, inflammation of muscle or membrane, shortness

of breath, strokes, and chest pain. Twitching of facial muscles, Bell's

palsy, tingling of the nose, cheek or face are reported. In addition, there

may be chest pain or soreness, enlarged spleen, liver function disorders,

tremors, extreme sensitivity to being touched or bumped, burning sensations,

stiff neck, meningitis, and encephalitis. Patients may experience continual

or recurring infections (sinus, kidney and urinary tract are most common).

Patients may suffer from a weakened immune system, the development of new

allergies, recurring upper respiratory tract infections (causing, or

worsening of pre-existing sinusitis, asthma, bronchitis, otitis,

mastoiditis), and allergic or chemical hypersensitivity's. Other noted

problems include: T.M.J., difficulty swallowing or chewing, tooth

grinding,arthritis (in small joints of fingers and larger, weight bearing

joints), Osgood-Schlatter's Syndrome (water on the knee), bone pain,

gout-like pain in toe, muscle spasms to the point of dislocating joints and

tearing muscletissue, leg and hip pain, " drawing up " of arms, " growing

pains " in children, tendonitis, heel pain, carpal tunnel syndrome, and

paravertebral lumbosacral muscle strain/spasm. Some patients tend to suffer

from a monthly " flare-up " of symptoms as the spirochetes reproduce and/or

die off.

39. When testing by EEG and MRI, what are the results that may indicate Lyme

disease could be a problem?

Some EEG's have been abnormal showing bilateral sharp waves and some

slowing. CAT Scans have usually been normal. A number of MRI's have been

abnormal showing evidence of increased signal in the white matter which may

resemble what is seen in patients with MS.

40. What are the symptoms and signs in a patient with Ehrlichiosis?

Symptoms of Ehrlichiosis may include: fever, chills, muscle pain, headaches,

confusion, nausea, vomiting, and a few patients have a rash.

41. Is Babesia a bacteria, protozoan, virus, or parasite?

Babesiosis is caused by a protozal parasite which is treated with antiviral

medication and an antibiotic. Antibiotics alone are not effective for

treating Babesiosis.

42. Is HGE or HME more common (in land, USA)?

Both HGE and HME have been responsible for infecting animals and humans in

land. Serology tests for both should be performed if Ehrlichosis is

suspected.

43. Approximately how many late cases of sero-negative Lyme patients will

become sero-positive after successful treatment?

It has been reported that increasing numbers of seronegative patients who

were diagnosed clinically and treated for Lyme disease, converted to

seropositive after the completion of antibiotic therapy. Unfortunately,

physicians unfamiliar with Lyme disease are refusing treatment to

seronegative patients even when they have active symptoms. The CDC states

Lyme disease is a clinical diagnosis and negative tests should not be used

to rule out diagnosis.

44. Why do some patients respond to certain antibiotics and others not

respond?

Certain gene types, spirochetal loads, various strains, co-infections,

previous health issues, delays in treatment, immune system activity, and

many other factors contribute to the success or failure of antibiotic

therapy. One size does not fit all. Each patient's history and clinical

picture should be considered by experienced physicians prior to treatment.

45. How high of a dose of doxycycline or tetracycline is needed for adults

to allow the medications to be bactericidal instead of bacteriostatic?

The 'typical' doses (100 mg 2 X day) of Doxycycline that were prescribed by

many doctors were not high enough to be considered bacteriostatic for Lyme

disease. To enhance antibiotic action several other agents are now being

prescribed along with the antibiotics in order to increase effectiveness. In

addition, the recommendations for doxycycline doses now range from 300-600

mg a day. If necessary, doxycycline can be administered by IV to keep blood

levels high.

46. What are the two most common medications prescribed to remove Lyme

disease neurotoxins from the body?

Welchol and Questran are the most commonly prescribed medications ordered to

remove toxins.

47. Should a patient with Lyme disease be restricted from donating blood?

Anyone who has Lyme disease or any of the co-infections often found in Lyme

patients should not donate blood or organs.

48. What special precautions should be taken with pregnant women who

contract Lyme disease?

There are special guidelines for treating pregnant women infected with Lyme

and other tick borne illnesses. Physicians are advised to contact the

International Lyme and Associated diseases Society (ILADS) for specific

treatment guidelines and precautions. All pregnant patients should be tested

for co-infections and should be aware that breast milk may also pass the

infection to children. Newborns should have cord samples and tissue sent for

PCR testing to check for Lyme disease.

49. What are the symptoms of Brucellosis?

Fever, chills, headaches, excessive sweating, fatigue, back pain, and joint

pain are some of the symptoms that may be present in a person infected with

Brucellosis.

50. How do you properly remove a tick? Where can the tick be sent for

testing and what are the costs? How do you package the tick for shipment?

Does the tick need to be alive for testing?

To remove an attached tick- Do not touch the tick with your fingers or

squeeze the tick. Use fine point tweezers to grasp the tick as close to the

skin as possible. Pull the tick out in the opposite direction from the way

it entered, with a smooth motion. Do not twist or crush the tick. Clean the

wound with alcohol to help prevent a secondary infection. Place the tick,

dead or alive, in a plastic baggy with a cotton ball that is slightly damp.

Contact your local health department or a lab that performs tick testing,

such as Igenex Lab, to determine the current shipping methods and prices for

tick testing. The current (04/03) cost to test an individual tick (or up to

20 ticks together) is approximately $50.00 for each tick borne disease.

This information is also published on Lymenet-

http://flash.lymenet.org/ubb/Forum1/HTML/013670.html

Visit Lymnet forum.

Carol Fitzgerald

VisionWork

919 Osos Way

Paso Robles, CA 93446

805.237.1807

805.550.3907

[ ] Questions

My daughter is 5 years old she is 40 inches tall and 35lbs. She is so

tiny! so much smaller than her brothers at this age.

So, this is breaking my heart. My daughter got sick over the holidays

I thought the flu...we all were so sick .she caught it on 12/25 and

again, yes she got sick with the flu twice.

Never really recovering, staying tired fever off and on. by 1/5

complaining her legs hurt. i saw nothing wrong with her i told her to

stop being a baby and go to school.. by 1/6 she could not walk went

for xrays they were neg. and it was late ,i do have 3 other children

they needed to eat and go to bed

so home we went she had a horrible night no sleep...me no sleep

by 8 am she was screaming and crying in pain...carried her back to

the dr both of us in tears now my daughter who crawled at 4 months

and walked at 8 months and is little but can take on her 10 year old

brother is curled up in a fetal position not able to talk.

So dr sees her sends us to childrens hospital..we are told she has

some form of arthritis and they do lots of tests she has a terrible

UTI send us home with wait for the test results and take antibiotics

{. so now 2 weeks out today is 1/21 she still has the UTI its caused

by a strep and e-coli bacteris and they tell me that her lymes tests

came back positive, the PCR, E-LISA, and WESTERN BLOT all came back

positive.

so went to library today no book there..feeling a little over whelmed

and lost So is lymes treatable with antibiotics and when will I get

my daughter back?

she is alittle beter but not back to normal we are seeing a

Rhuemtiodoligist..ok cant spell that one on the 3rd of Feb anyone

else I should ask to see? Also she never had a tick to my that <--

wait now that I think of it almost 2 years ago she had a tiny tick<--

I know of I am her only care taker..hubby not around and do not use

babysitter..yes I have no life..lol

never a rash or anything until this so this means that it has gone

undetected for how long? over the summer she became constipated and

we have had problems ever since..is this from that too?

My question is what credentials should and what makes a LLMD?

What makes a LLMD different from my pediatrician?

What about health insurance?

this DR is out of network and I'm just going to pay for it myself but

if things continue or get worse I will not be able to afford that.

What important questions should I ask? both the Drs. and Ins? What

are some of the things you all wish someone would have told you or

thought about asking in the beginning?

I went to the county library and the only book they have was out

Lyme the cause, cure and controversy? I think that was the title? it

was out and not due back until the 2/14 .

Any of you read a book? Have the title handy? Would love to read up

on lyme disease. I'm not really ready to accept that my daughter has

this.

I read only on-line that there is no test that says YES you have

lyme...its a process of elimination and if they say your western blot

came back positive... something else could have made that happen

I'm at a disadvantage knowing nothing of this disease and not having

her records in front of me ...by the way calling for all her records

on Monday.

so far not being able to get any really hard copy proof of

anything other than my pediatrician telling me to have her take amx

for 2 more weeks and see the Rhuemitolighst.

spelled that wrong and spell check doesn't know it and to lazy to

look it up right now forgive me. Just confused.

Also let me add today 1/30 maggie has been saying her hands were

stinging and putting cold water on them. now tonight they are red and

slightly swollen. they look fire red and tight..like the skin is

tight... do any of you ever have this is this related to lyme?

Help ???

To contact the list owner for any reason please write to:

-Owner

February 29, 2004

Dear Carey, my name is Janice and I have a son who is now 8years. He has Stills Disease (systemic JRA). His paediatrician called it a working diagnosis for quite sometime before diagonising him with the above diagnosis. I was told that there was no actual blood test that they could do to show what it is. Not sure why.Something to do with the type of arthritis it is as to whether they show rheumatoid factor, I think it's been awhile since i read all the info on it.Unfortunately this disease seems to run this extraordinary course that takes the child and the parents to places that we never even knew existed. Hope this has been of some help, this is a great group for support. People here know what your talking about.

Kind Regards Janice from downunder (N.Z)

Questions

HelloMy daughter is 2 years old has not yet been diagnosed with jra. Her pediatricians think she has it and her specialist want to wait and see. For a year she has had high spiking fevers of unknown origin. She was first diagnosed with . Then in September of last year her joints started swelling and she fevered the entire month. They at first would go from one joint to the other. In November she had her tonsils out and her fevers have gotten better. The joints have not. She also gets an unusual rash that appears either on her chest or her arms usually lasting anywheres from an hour to a few days. Her joint swelling now is mainly in her wrists and hands. The specialist said they don't see any joint deteriation although no x-rays have been done. Her blood work also comes back negative. So now the are saying it is an autoimmune disorder of unknown origin. They don't want to give her a jra diagnosis right now since it has not been long enough. I guess my question is how long does it usually take since the doctors are not very forth coming with information? What kind of tests are usually done to figure this out? Should x-rays be done? I know that early morning, bed time, cold weather and a lot of physical play seems to be when we notice an increase in swelling and pain. I am very frustrated and concerned. I want so much to help her but feel like I keep hitting a brick wall. If anyone could give me any advice I would greatly appreciate it.Carey mom to Hannah ville, TN

March 1, 2004

Hello Carey,

As far as I know, there isn't any test that can be ran to determine what type of arthritis your daughter has. It is more a "ruling out" thing that the doctors have to do. It would probably be a good idea to document when the fever occurs (the time of day and how high her fever runs), when and where the rashes are and even when she is feeling okay. This could/should give the doctor some indication as to what might be going on.

With my daughter, her fever seemed to spike to 107 in the afternoons and would drop to around 101 in several hours. This went on for many weeks and I noticed that she also had a rash on her chest and thighs. In the early mornings she would be fine only for things to happen all over again and without any warning.

Sometimes the doctors will look at the "sed-rate" to see if it is elevated but still that does not give a diagnosis. Also, there is a ANA test that can be given. Do you know of any of the test that have been ran?

I wish you the best and hope that your daughter starts feeling better really soon!

Sincerely,

March 1, 2004

In a message dated 2/29/04 6:44:21 PM Central Standard Time, app_37190@... writes:

.. The specialist said they don't see any joint deteriation although no x-

rays have been done. Her blood work also comes back negative. So now the are saying it is an autoimmune disorder of unknown origin.

They don't want to give her a jra diagnosis right now since it has not been long enough. I guess my question is how long does it usually take since the doctors are not very forth coming with information? What kind of tests are usually done to figure this out? Should x-rays be done? I know that early morning, bed time, cold weather and a lot of physical play seems to be when we notice an increase in swelling and pain. I am very frustrated and concerned. I want so much to help her but feel like I keep hitting a brick wall.

If anyone could give me any advice I would greatly appreciate it.

Hi Carey,

Persistant arthritis has to continue for 6 weeks to make a diagnosis.There are no specific blood tests for JRA.You basicaly have to rule other things out first.X rays will ownly show damage where as MRI's can detect inflimation.

You didn't mention what kind of specialist.Are you going to the department of Pediatric Immunoligy,Rheumatoligy,allergies at Vanderbilt?The reason I ask is we live in Murfreesboro Tn and I have a 5 yr old that was diagnosed in June01.We see Dr Lawton and Dr.Hummel at Vandy and Dr.Mencio is the orthopedist sees.I am sorry you feel like you keep slamming into a brick wall.It's got to be so hard when the doctors dont know exactly what your child has so they don't know the best way to treat it.In the meantime the child suffers.This list is great but if you want to talk about Vanderbilt or and how we got him in you can e-mail me at Arthurnator@...

Hugs

Becki and 5 systemic

March 1, 2004

Hi Carey,

Welcome to the group...

I think most of us here can totally understand where you are right now.. weve all been there. I know I have!

JRA, is not something that can be dx with any one simple test, unfortunatly, its more a case of ruling out other illness, keeping an eye on its course and in time you hopefully get an answer. Theres a few on here that dont have a definate rx yet, although all signs say JRA.

My son has systemic JRA, but in the begining, I was told he had untreated strep, scarlet fever, Kawssakis disease and even a "virus". The 1st few months are the worse and i think are also the times Systemic kids are at their worse. Once they start treating things get better.

Even now, Nicks rhumey made the comment at his last visit, "you are always wondering if you have the right DX" I think that the rhuemys are always keeping in the back of their minds that it might be something else and always keep an open mind and watch for any and all new symptoms.

Systemic Kids will more than likely have negative ANA and negative RF.. they will have elevated SED rates and CRPs although this is not always the case and JRA are not the only factors to make these two tests evevated.

The best advice i got was to keep a daily record, take pictures of any rashes and learn to be the best advocate you can be for your child, by reading all you can, asking lots of questions and getting to understand this disease.

It is all overwelming at 1st, but as you learn more, it will make more sense. The folks on this list have soo much knowledge between them and will be able to help answer any of your questions and more than that, they are an amazing source of support and compassion.

Hugs Helen, mom to (6,systemic)

Hugs..Helen DH Dan DS's (20)(14)(12)Zachary(9)(6)

DD (4)>From: app_37190@... >Reply- > >Subject: Questions >Date: Mon, 01 Mar 2004 00:42:10 -0000 > >Hello > >My daughter is 2 years old has not yet been diagnosed with jra. Her >pediatricians think she has it and her specialist want to wait and >see. For a year she has had high spiking fevers of unknown origin. >She was first diagnosed with . Then in September of last year >her joints started swelling and she fevered the entire month. They >at first would go from one joint to the other. In November she had >her tonsils out and her fevers have gotten better. The joints have >not. She also gets an unusual rash that appears either on her chest >or her arms usually lasting anywheres from an hour to a few days. >Her joint swelling now is mainly in her wrists and hands. The >specialist said they don't see any joint deteriation although no x- >rays have been done. Her blood work also comes back negative. So >now the are saying it is an autoimmune disorder of unknown origin. >They don't want to give her a jra diagnosis right now since it has >not been long enough. I guess my question is how long does it >usually take since the doctors are not very forth coming with >information? What kind of tests are usually done to figure this out? >Should x-rays be done? I know that early morning, bed time, cold >weather and a lot of physical play seems to be when we notice an >increase in swelling and pain. I am very frustrated and concerned. I >want so much to help her but feel like I keep hitting a brick wall. >If anyone could give me any advice I would greatly appreciate it. > >Carey mom to Hannah >ville, TN > Take off on a romantic weekend or a family adventure to these great U.S. locations.

March 1, 2004

Hi Carey:

I am glad you found this group. You will find this group to have some of the

most caring, compassionate and informative people! People who have and are

still walking in your shoes!

My daughter, Caitlin (11), is still not officially diagnosed. She became

very ill in November with a sore throat, fever (105) rash and in such pain that

she couldn't walk. During the two weeks of going back and forth many times to

the peds office, they strep cultured her twice and they were both negative.

However, at the hospital, her ASO test came back positive. She stay in the

hospital for a week and while there, they suspected Rheumatic Fever. Now the

rheumy is looking at Reactive Arthritis or Systemic JRA (Still's). Her

cardiology

check up today was perfect and I think RF is out, thankfully. She has had

just about every test done under the sun. Her sed rate was very high (120). It

is now down to normal at 11 YEAH. This just happened in the last two weeks.

She also had a bone marrow biopsy done to check for leukemia. Scary stuff,

but like people have said already, it's a process of ruling out as you go along.

The waiting is frustrating. I know. We have kept a journal of her everyday

events. Fevers, rash, meds, things that worked, things that didn't, if she

vomited, when I called the doctors, what they said, what she ate, everything!

It's great to help keep track of what seems to be going on and great for the

doctors to review if needed. I look at it now and see how very far she has

come. We took pictures also. Caitlin has had red spots, splotches and lines

(almost like someone scratched her).

At her latest blood draw her numbers are, for the most part, now good. Sed

rate is down, hemoglobin is up, etc. We have learned to live day by day with

this illness. We still want an official diagnosis, but only time will tell

that.

Caitlin is on quite a few medications for her illness. Have they put your

daughter on anything to help with the pain and the swelling?

I wish your little Hannah pain free days ahead and hope that you get some

answers soon.

Do you have other children? I know Caitlin's sisters each had a very

different reaction to her serious illness. Her twin sister, , wanted

Christmas again because " it wasn't much fun because Caitlin was so sick " (she

had the

bone marrow the day before too). She also wanted to go to church and pray

for her all the time. Meanwhile, her sister, Alyssa (13), just told her to

" stop her whining " . Typical teenager, I guess.

Take care.

Patty

March 1, 2004

In a message dated 3/1/04 5:23:05 PM Eastern Standard Time,

maryfield@... writes:

<<

Patty-

I have hard several people refer to an ASO test. What is that?

Therese

Re: Questions

>>

Hi Therese:

What is an antistreptolysin-O (ASO) test?

The antistreptolysin-O (ASO) test is a blood test that measures the levels of

ASO in the blood. ASO is an antibody produced by the body to fight

streptolysin-O â€” an enzyme produced by a specific type of bacteria called

Group A

streptococci (â€œstrepâ€). High levels of ASO may remain in the blood for

months

following the onset of infection, even after the bacteria causing the infection

have been eliminated.

Initially, I was told it was actual strep in the blood. Totally freaked me

out. The doctor, just today, explained to me that it is not actual strep in

the bloodstream, but an antibody created to fight off the strep. Makes sense to

me now:)

Take care.

Patty

March 1, 2004

Very well said Helen. Strep certainly seems to be the 'kick off' to systemic

JRA. I'd be curious to see just who with SoJRA was triggered or flared by

strep. Anyone care to answer if theirs was? We might just find out something

interesting, ehhh.

Take care.

Patty

March 1, 2004

Hi Helen-

Thanks for the answer. So, a positive ASO would be something that would possibly help in diagnosing certain forms of JRA because they start many times with strep? Is that how it relates?

Therese

Re: Questions > > > Hi Carey: > > I am glad you found this group. You will find this group to have some of the > most caring, compassionate and informative people! People who have and are > still walking in your shoes! > > My daughter, Caitlin (11), is still not officially diagnosed. She became > very ill in November with a sore throat, fever (105) rash and in such pain that > she couldn't walk. During the two weeks of going back and forth many times to > the peds office, they strep cultured her twice and they were both negative. > However, at the hospital, her ASO test came back positive. She stay in the > hospital for a week and while there, they suspected Rheumatic Fever. Now the > rheumy is looking at Reactive Arthritis or Systemic JRA (Still's). Her cardiology > check up today was perfect and I think RF is out, thankfully. She has had > just about every test done under the sun. Her sed rate was very high (120). It > is now down to normal at 11 YEAH. This just happened in the last two weeks. > She also had a bone marrow biopsy done to check for leukemia. Scary stuff, > but like people have said already, it's a process of ruling out as you go along. > > The waiting is frustrating. I know. We have kept a journal of her everyday > events. Fevers, rash, meds, things that worked, things that didn't, if she > vomited, when I called the doctors, what they said, what she ate, everything! > It's great to help keep track of what seems to be going on and great for the > doctors to review if needed. I look at it now and see how very far she has > come. We took pictures also. Caitlin has had red spots, splotches and lines > (almost like someone scratched her). > > At her latest blood draw her numbers are, for the most part, now good. Sed > rate is down, hemoglobin is up, etc. We have learned to live day by day with > this illness. We still want an official diagnosis, but only time will tell > that. > > Caitlin is on quite a few medications for her illness. Have they put your > daughter on anything to help with the pain and the swelling? > > I wish your little Hannah pain free days ahead and hope that you get some > answers soon. > > Do you have other children? I know Caitlin's sisters each had a very > different reaction to her serious illness. Her twin sister, , wanted > Christmas again because "it wasn't much fun because Caitlin was so sick" (she had the > bone marrow the day before too). She also wanted to go to church and pray > for her all the time. Meanwhile, her sister, Alyssa (13), just told her to > "stop her whining". Typical teenager, I guess. > > Take care. > Patty > > >------------------------------------------------------------------------------ >

March 1, 2004

HI Therese,

An ASO blood test (Anti-Streptolysin O Titer) checks for a prior strep infection. To see if theres been an untreated bout of strep that has shown up in the blood stream.

Hope this helps..

Hugs helen, mom to (6,systemic)

Hugs..Helen DH Dan DS's (20)(14)(12)Zachary(9)(6)

DD (4)>From: " and Therese Z." >Reply- >>Subject: Re: Questions >Date: Mon, 1 Mar 2004 16:09:09 -0600 > >Patty- >I have hard several people refer to an ASO test. What is that? >Therese > Re: Questions > > > Hi Carey: > > I am glad you found this group. You will find this group to have some of the > most caring, compassionate and informative people! People who have and are > still walking in your shoes! > > My daughter, Caitlin (11), is still not officially diagnosed. She became > very ill in November with a sore throat, fever (105) rash and in such pain that > she couldn't walk. During the two weeks of going back and forth many times to > the peds office, they strep cultured her twice and they were both negative. > However, at the hospital, her ASO test came back positive. She stay in the > hospital for a week and while there, they suspected Rheumatic Fever. Now the > rheumy is looking at Reactive Arthritis or Systemic JRA (Still's). Her cardiology > check up today was perfect and I think RF is out, thankfully. She has had > just about every test done under the sun. Her sed rate was very high (120). It > is now down to normal at 11 YEAH. This just happened in the last two weeks. > She also had a bone marrow biopsy done to check for leukemia. Scary stuff, > but like people have said already, it's a process of ruling out as you go along. > > The waiting is frustrating. I know. We have kept a journal of her everyday > events. Fevers, rash, meds, things that worked, things that didn't, if she > vomited, when I called the doctors, what they said, what she ate, everything! > It's great to help keep track of what seems to be going on and great for the > doctors to review if needed. I look at it now and see how very far she has > come. We took pictures also. Caitlin has had red spots, splotches and lines > (almost like someone scratched her). > > At her latest blood draw her numbers are, for the most part, now good. Sed > rate is down, hemoglobin is up, etc. We have learned to live day by day with > this illness. We still want an official diagnosis, but only time will tell > that. > > Caitlin is on quite a few medications for her illness. Have they put your > daughter on anything to help with the pain and the swelling? > > I wish your little Hannah pain free days ahead and hope that you get some > answers soon. > > Do you have other children? I know Caitlin's sisters each had a very > different reaction to her serious illness. Her twin sister, , wanted > Christmas again because "it wasn't much fun because Caitlin was so sick" (she had the > bone marrow the day before too). She also wanted to go to church and pray > for her all the time. Meanwhile, her sister, Alyssa (13), just told her to > "stop her whining". Typical teenager, I guess. > > Take care. > Patty > > >------------------------------------------------------------------------------ >

March 3, 2004

In a message dated 3/3/04 4:02:23 PM Eastern Standard Time, carneyval@...

writes:

<< uld be interested to see what the percentages could be and if there was

any correlation. Take care!

Val

Rob's >>

It sure does seem that anything can trigger JRA. Maybe something will show a

higher incidence.

Take care.

patty

March 3, 2004

Hi Patty,

Robbie has systemic onset JRA, and his wasn't triggered by a strep infection -

though was probably triggered by an ear infection. His MCD was triggered by

conjunctivitis - the Nephrologist said that a flare could be triggered by

anything that makes the immune system kick in, such as an injury, any type of

infection, bee sting or bug bite. I have always thought that the same was true

of JRA. Still, it would be interested to see what the percentages could be and

if there was any correlation. Take care!

Val

Rob's Mom (6, systemic)

In a message dated 3/1/2004 6:15:12 PM Eastern Standard Time, Emeraldsx3 writes:

>

> Very well said Helen. Strep certainly seems to be the 'kick off' to systemic

> JRA. I'd be curious to see just who with SoJRA was triggered or flared by

> strep. Anyone care to answer if theirs was? We might just

> find out something

> interesting, ehhh.

>

> Take care.

> Patty

>

April 26, 2004

>>BM's are still fairly non existant without intervention

> by me.

My constipation ideas

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

Anyway he is on Ritalin, a big no no to a lot of people but it has

> made a difference although still not comfortable with the idea. I know

> people have had success with various diets for children with ADHD,

diet is a

> no go area, he already looks half starved on what little he does eat,

Enzymes would be a good thing to consider then.

> wondering about him simply having some enzymes, Peptizyde is the one

I am

> thinking about, would I be able to notice a difference even if he

stayed on

> the Ritalin.

Probably. What foods will he currently eat? That makes a difference.

Peptizyde is for proteins like gluten/casein [wheat/milk] and soy.

Zyme Prime is for many foods, carbs, starches, and some proteins.

No-Fenol is for phenol foods like fruits.

>> Also the size of tablets still bother me, he can only take a

> very small capsule,

It is not a " very small " capsule, but not too large either.

>> won't chew pills, and will know if stuff is mixed into

> food. Any ideas?

I open capsules and mix supplements into peanut butter, then spread

onto a cracker. I don't hide it into food, this is a separate thing

which my kids know they are required to eat.

Other ideas here

http://www.enzymestuff.com/discussionmixing.htm

Dana

April 26, 2004

From making a list of foods the other day on another list someone suggested

there could be a wheat problem as he eats a lot of that type of product. I

have no chance of switching him to much else. That's why I was thinking

peptizyde. He doesn't eat any fruit so don't need the No Fenol one. I read

your constipation page when i first joined and took a couple of ideas from

there like the stool/feet idea, I have already used others like the

glycerine suppositories and dulcalax. The only thing I have had any success

with are Epson salts which i understand is a laxative and shouldn't be given

long term although apparently my great nan used to have a glass a day and

never had any problems!! But on the other hand he is at least getting a

strong feeling of needing to go and not ignoring it. A few grains of salt

have produced more results this past week then a high dose of senna, sodium

picasulphate or anything else that doctors have recommended

~Best Wishes~

Ruth

Re: Questions

|

| >>BM's are still fairly non existant without intervention

| > by me.

|

| My constipation ideas

|

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

|

| Anyway he is on Ritalin, a big no no to a lot of people but it has

| > made a difference although still not comfortable with the idea. I know

| > people have had success with various diets for children with ADHD,

| diet is a

| > no go area, he already looks half starved on what little he does eat,

|

| Enzymes would be a good thing to consider then.

|

| > wondering about him simply having some enzymes, Peptizyde is the one

| I am

| > thinking about, would I be able to notice a difference even if he

| stayed on

| > the Ritalin.

|

| Probably. What foods will he currently eat? That makes a difference.

| Peptizyde is for proteins like gluten/casein [wheat/milk] and soy.

| Zyme Prime is for many foods, carbs, starches, and some proteins.

| No-Fenol is for phenol foods like fruits.

|

| >> Also the size of tablets still bother me, he can only take a

| > very small capsule,

|

| It is not a " very small " capsule, but not too large either.

|

| >> won't chew pills, and will know if stuff is mixed into

| > food. Any ideas?

|

| I open capsules and mix supplements into peanut butter, then spread

| onto a cracker. I don't hide it into food, this is a separate thing

| which my kids know they are required to eat.

|

| Other ideas here

|

| http://www.enzymestuff.com/discussionmixing.htm

|

| Dana

|

April 27, 2004

Hi Ruth

As you are probably aware, Ritalin takes the appetite away. I'm not against

taking Ritalin, but its probably one of the reasons your child is on the thin

side. As far as BM could you get your son to eat salad, spinach or flax seed

oil is good too, helps them go . Drinking enough water helps too.. If your

not gluten free than s Bran is good if you can sprinkle it on his cereal.

I mix supplements with peanut butter or honey it seems to work well around

here. We haven't tried the enzyme route here either. My daughter has ADHD

also, Ritalin and Adderall made here off the wall ever the tiniest dose. But

taking red dye and additives and preservative, low sugar and low phenol helps

here too. Hope some of this helps you.

K

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