Help please!

[Guest guest]

Dear Mami,

I believe that if your daughter was diagnosed with Lyme, she may well

still have it, and it could cause most of the problems you describe.

She needs as much help as you can afford, and then some - it's pretty

hard not to be depressed when you have Lyme disease, I am constantly

battling depression myself, and I hate to go out, mostly because I have

no energy and the world is very very difficult to navigate without full

steam.

My own experience being chronically ill is that I too have a really hard

time being around people, which demands a lot of energy and usually

tires me out very very quickly, also I am so obsessed with my own

problems that I can't enjoy myself, and others don't realize how sick I

am, mostly because I don't look sick.

I'm hearing that your daughter is still quite ill and besides medical

attention from a good Lyme doctor, needs some counseling help. It's

hard to be compassionate 24 hours a day, so get some help for yourself,

too.

Good luck,

Leana

" Mami " wrote:

> I've been having an awful time with my daughter. At the age of 7 she

> was diagnosed with lyme. Now she's 15. She's been treated 4 times

> for it and now there saying she has chronic lyme... I took her to a

> lyme doctor who says she might not have it at all. I'm pulling my

> hair out now....!!!!! She's going back to that dr. on the 14th of

> this month. He also said she has goiters and that might be what's

> causing most of her problems. Now my problem is....... She is

> majorally depressed. She wont go to school. I'm in the process of

> trying to get her a tutor... she freaks out around a lot of people

> and is hearing voices. Oh I'm not going to have any hair left! Is or

> has anyone had this problem? She also pretty much stays in her room.

> I don't know what to do!!!

> any imput would be appreciated!

> Thanks

> Dawn

>

>

>

[Guest guest]

Dawn,

Yes -- we've had almost every single problem you are describing. It is Lyme!

The health problems, including hearing voices, all come from Lyme being left

to run rampant. Don't let any local doctor tell you that it isn't. They just

simply DO NOT KNOW.

You need to get her to a good LLMD right away. Has she remained under care,

abx? If not, she needs to be put on strong antibiotics right away. She is

retreating from the world because she feels awful and is scared on top of it.

My son went through all of these same things, and with proper (strong enough,

long enough...) antibiotic treatment, those horrible symptoms were at least

kept at bay. He now has many other health problems due to Lyme being left

undiagnosed and untreated for far too long.

Hallucinations and other frightening problems are most definitely a part of

Lyme-- my son even started having uncontrollable sobbing episodes, seeing

green beings in the room, things like that. With I.V. Rocephin, that was the

very first thing to go away, thank God! If we had taken him to the E.R. the

night that much of this started, they likely would have admitted him to a

psych ward...we were waiting for a positive PCR and being forced to just

watch him go downhill while waiting for a Lyme doctor to diagnose him. It is

a nightmare that I wouldn't wish on anyone.

I wish you the best -- but you have to get her some Lyme treatment help in

order to do the best by her.

Judie

[Guest guest]

Judie,

The lyme doctor is saying it... I'm going to have to take her to Boston which i

cant afford. I wont even tell you what the regular docs say... it would make you

sick! I'm about aggravated and I swear if she has needed medication and they

haven't given it to her im going to sue the living piss out of them! Sorry

people just very p.o.ed today!!!!

Dawn

Re: [ ] Help please!

Dawn,

Yes -- we've had almost every single problem you are describing. It is Lyme!

The health problems, including hearing voices, all come from Lyme being left

to run rampant. Don't let any local doctor tell you that it isn't. They just

simply DO NOT KNOW.

You need to get her to a good LLMD right away. Has she remained under care,

abx? If not, she needs to be put on strong antibiotics right away. She is

retreating from the world because she feels awful and is scared on top of it.

My son went through all of these same things, and with proper (strong enough,

long enough...) antibiotic treatment, those horrible symptoms were at least

kept at bay. He now has many other health problems due to Lyme being left

undiagnosed and untreated for far too long.

Hallucinations and other frightening problems are most definitely a part of

Lyme-- my son even started having uncontrollable sobbing episodes, seeing

green beings in the room, things like that. With I.V. Rocephin, that was the

very first thing to go away, thank God! If we had taken him to the E.R. the

night that much of this started, they likely would have admitted him to a

psych ward...we were waiting for a positive PCR and being forced to just

watch him go downhill while waiting for a Lyme doctor to diagnose him. It is

a nightmare that I wouldn't wish on anyone.

I wish you the best -- but you have to get her some Lyme treatment help in

order to do the best by her.

Judie

[Guest guest]

Thanks Leana....

Yes, she was diagnosed with lyme when she was 7.... She couldn't walk. She's

had 4 treatments... amoxicillon. The last time she was tested they told me she

had chronic lyme and couldn't do anything for her.

She is in counseling and so am I. I wouldn't have it any other way! I'm calling

for a appointment for her on Monday.

Dawn

Re: [ ] Help please!

Dear Mami,

I believe that if your daughter was diagnosed with Lyme, she may well

still have it, and it could cause most of the problems you describe.

She needs as much help as you can afford, and then some - it's pretty

hard not to be depressed when you have Lyme disease, I am constantly

battling depression myself, and I hate to go out, mostly because I have

no energy and the world is very very difficult to navigate without full

steam.

My own experience being chronically ill is that I too have a really hard

time being around people, which demands a lot of energy and usually

tires me out very very quickly, also I am so obsessed with my own

problems that I can't enjoy myself, and others don't realize how sick I

am, mostly because I don't look sick.

I'm hearing that your daughter is still quite ill and besides medical

attention from a good Lyme doctor, needs some counseling help. It's

hard to be compassionate 24 hours a day, so get some help for yourself,

too.

Good luck,

Leana

" Mami " wrote:

> I've been having an awful time with my daughter. At the age of 7 she

> was diagnosed with lyme. Now she's 15. She's been treated 4 times

> for it and now there saying she has chronic lyme... I took her to a

> lyme doctor who says she might not have it at all. I'm pulling my

> hair out now....!!!!! She's going back to that dr. on the 14th of

> this month. He also said she has goiters and that might be what's

> causing most of her problems. Now my problem is....... She is

> majorally depressed. She wont go to school. I'm in the process of

> trying to get her a tutor... she freaks out around a lot of people

> and is hearing voices. Oh I'm not going to have any hair left! Is or

> has anyone had this problem? She also pretty much stays in her room.

> I don't know what to do!!!

> any imput would be appreciated!

> Thanks

> Dawn

>

>

>

[Guest guest]

One option for your daughter may be to have her join an online support group

for kids with Lyme, similar to Lyme Aid. The teen list I run is called Lyme

Teens and can be found here: Lyme-Teens/ . It

may help to discuss the symptoms and doubts she is experiencing with others

who have felt the same way.

You may also want to look at http://www.lymeteens.net . There is a message

board there where questions can be asked and hopefully answered.

Please let me know if you have any questions about Lyme Teens.

=)

Robynn

-Owner

[ ] Help please!

I've been having an awful time with my daughter. At the age of 7 she

was diagnosed with lyme. Now she's 15. She's been treated 4 times

for it and now there saying she has chronic lyme... I took her to a

lyme doctor who says she might not have it at all. I'm pulling my

hair out now....!!!!! She's going back to that dr. on the 14th of

this month. He also said she has goiters and that might be what's

causing most of her problems. Now my problem is....... She is

majorally depressed. She wont go to school. I'm in the process of

trying to get her a tutor... she freaks out around a lot of people

and is hearing voices. Oh I'm not going to have any hair left! Is or

has anyone had this problem? She also pretty much stays in her room.

I don't know what to do!!!

any imput would be appreciated!

Thanks

Dawn

[Guest guest]

Thanks Robynn....

I will let her know... I tried this once before and she didn't want to do it...

she is such a lump! LOL Maybe I'll tell its part of her school work!

thanks again

Dawn

[ ] Help please!

I've been having an awful time with my daughter. At the age of 7 she

was diagnosed with lyme. Now she's 15. She's been treated 4 times

for it and now there saying she has chronic lyme... I took her to a

lyme doctor who says she might not have it at all. I'm pulling my

hair out now....!!!!! She's going back to that dr. on the 14th of

this month. He also said she has goiters and that might be what's

causing most of her problems. Now my problem is....... She is

majorally depressed. She wont go to school. I'm in the process of

trying to get her a tutor... she freaks out around a lot of people

and is hearing voices. Oh I'm not going to have any hair left! Is or

has anyone had this problem? She also pretty much stays in her room.

I don't know what to do!!!

any imput would be appreciated!

Thanks

Dawn

[Guest guest]

Dear Dawn,

One suggestion is to find a local doctor who is willing to treat her with

directions from a good LLMD like the one in Boston (if there is one) and do it

that way. It would help if you could see the LLMD once and then continue her

treatment with a local doctor if you could find one open minded enough to follow

directions from the LLMD. Some doctors are willing but just don't know enough

about it. Another positive outlook is you would " create " an LLMD in your area.

Check out http://support.lymenet.org/ for a support group near you and see what

doctors they recommend. I am in PA but still drive quite a distance to see an

LLMD.

Hugs, Michele

[Guest guest]

In a message dated 3/17/03 11:01:04 AM Central Standard Time,

kagreen@... writes:

> How do you continue to take care of yourselves and a family? Do you

> cook sepearte meals for you and them? Do they go on a Candida diet

> with you? My husband has been wonderful through my entire sickness, 6

> years. He is getting a little tired of eating non traditional food

>

I don't cook two meals. My kids are perfectly happy eating spelt pasta, or

rice pasta, and I just skip the starch part. We all share the meat and

veggies. If I want a whole grain, which my family won't touch, I make it

just for me, and share the rest of the meal. Takes some planning but it can

be done.

And as far as the zapper thing goes, it does help, but I don't think it will

cure you even if you zap for 30 days. Did make me feel better though.

Hanida

[Guest guest]

see bk " yeast control in 7 days " at healthguardians.com

Simple (not easy) and effective. Also paleodiet.com

Help Please!

Hi, I am new to this forum. I am a SAHM with three children under the

age of 6. I am tired of spending so much money and still being sick.

I have only realized recently that Candida is one of or the main

problem I have. Here are the symptoms...headaches, severe joint and

muscle pain, foggy brain, gut ache, allergies to food, fragrances,

and environmental, asthma, FATIGUE.... I don't want to go on a

Candida diet, but I will if I have too. A lot of times I feel worse

and have less energy after I eat. I am not eating red meat or

drinking milk right now.

What is the diet exactly? I am on Reliv products, probiotics, Capryl

Acid, Nettles, Garlic, Zyrtec and Flonase, Flax seed oil. I can't

keep spending so much money.

Does zapping cure Candida if I do it every day for 30 days? (Dr

)

What do you think about Fitline basic Plus nutrition?

How do you continue to take care of yourselves and a family? Do you

cook sepearte meals for you and them? Do they go on a Candida diet

with you? My husband has been wonderful through my entire sickness, 6

years. He is getting a little tired of eating non traditional food

though.

Thanks so much for your help!!

Angie

kagreen@...

[Guest guest]

I did the health guardians yeast control program for 4 months.

Followed the diet very well (I have food allergies, so I was actually more

restrictive).

Took all the supplements, dioxychlor, pau d'arco tea, etc. Even ozone. Also

tried spiritual approaches advised by the practitioner, who I later discovered

to be somewhat questionable in his ethics.

My point of view on this one is, that if you have mild candida that you have

had for less than a year or two, it may work. Some of the products are

beneficial, but ultimately it did not work for me after doing it for 5 months.

I really don't think 7 days is viable though for most people with this problem.

It's not a quick fix if you've had it a long time.

That was my experience.

[Guest guest]

Oh, forgot to add that I did the program under the practitioner's guidance for 4

months, then on my own for an additional month, month and a half.

Also, if you are a woman and are thinking of working directly with the

practitioner (in person), please email me. I may have some important info for

you to consider.

[Guest guest]

Hi Angie,

The diet is complicated, and it looks much more difficult than it

really is when you see the foods to avoid list (all sugars, vinegar,

caffeine, alcohol, sometimes all grain flour, most dairy). I

recommend that you purchase a book on treating candida that includes

recipes. That way, you have a lot of choices of what you really can

cook and consume. The book that I use that I find excellent is

" Complete Candida Yeast Guidebook, Revised 2nd Edition " by Jeanne

Marie with Zoltan P. Rona, M.D. It has over 200 recipes, and

even has recipes for things like ketchup, gravy and mayonnaise. I

bought it from Amazon.ca (the Canadian version of Amazon).

I'm married without children. I cook meals for my husband and I.

Sometimes we eat different things (i.e. breakfasts). Most of the time,

we eat the same foods. He'll eat my special soups and dips. Or, I'll

pick and choose what I eat at the table (ie. we're eating salmon,

veggies and rice - I'll skip the rice). Or, I'll make my special food

and he'll eat it with someting else I can't have (i.e. ham sandwich).

Also, I keep the cookie jar stocked with cookies that I don't like

( wafers).

In good health,

> Hi, I am new to this forum. I am a SAHM with three children under

the

> age of 6. I am tired of spending so much money and still being sick.

> I have only realized recently that Candida is one of or the main

> problem I have. Here are the symptoms...headaches, severe joint and

> muscle pain, foggy brain, gut ache, allergies to food, fragrances,

> and environmental, asthma, FATIGUE.... I don't want to go on a

> Candida diet, but I will if I have too. A lot of times I feel worse

> and have less energy after I eat. I am not eating red meat or

> drinking milk right now.

>

> What is the diet exactly? I am on Reliv products, probiotics, Capryl

> Acid, Nettles, Garlic, Zyrtec and Flonase, Flax seed oil. I can't

> keep spending so much money.

>

> Does zapping cure Candida if I do it every day for 30 days? (Dr

> )

>

> What do you think about Fitline basic Plus nutrition?

>

> How do you continue to take care of yourselves and a family? Do you

> cook sepearte meals for you and them? Do they go on a Candida diet

> with you? My husband has been wonderful through my entire sickness,

6

> years. He is getting a little tired of eating non traditional food

> though.

>

> Thanks so much for your help!!

> Angie

> kagreen@c...

[Guest guest]

Where in the US did you come from? Certainly there is

a significant difference in the altitude. That can very definately

cause lightheadedness. I experience the same thing when I

go to visit my folks in northern Calif. I am in colorado, very

high altitude. I get dizzy at first, and then sluggish where

they are.

Are you at risk for diabetes?

[Guest guest]

hi, it has been a long time since we've heard from you! Certainly does sound

like your life has been a little crazy, but it does sound interesting!

Sorry about the dizziness. Have you checked your blood pressure?

I tend to have low blood pressure a lot, and when it drops too low, I feel

dizzy.

Also, have you changed your eating habits since the move? are you eating less?

are you eating less frequently? is your diet much different? I have problems

with low blood sugar, and if I change my diet much, I start to have problems.

Too many carbs make me a little dizzy. I need to nibble throughout the day,

especially if I'm active or I'll get dizzy. If I'm under a lot of stress, my

blood sugar can plummet also, and I'll experience dizziness.

were you taking supplements prior to the move and maybe have forgotten?

are you getting adequate sleep? Is your sleep restful like it was before you

moved?

are you dizzy all the time pretty much or is it mostly when you arise from a

sitting position?

I have Hashi's too, and I know it's scary when you think about these autoimmune

disorders and how it's affecting our bodies. I just had a test come back

" borderline " for another autoimmune disorder. I'll find in the next couple of

weeks what that means.

I'm sure though with you being so young and going through all this, it must be

terribly hard on you. It's hard not to worry. I know you just wanna have a good

time.

Can you see a doctor there?

Hang in!!! Hugs, sheila

ebjornseth <bjornset@...> wrote:

Hello,

It's been a while since I've posted here because I haven't been on

the internet in a while. My life has been a little hectic lately.

I just moved to England from the states in the beginning of January

to study here for 6 months. Since I've been here I've felt very

lightheaded/dizzy. I've been having problems with my thyroid and

just increased my does on Jan 5 to .125mg. And, there is a 6 hr

time difference here and I just switched my medication to the new

time instantly. Does anyone think my lightheadedness has to do with

my switching of meds? I have been having classic hypo symptoms but

they are getting better. I am so scared of Diabetes, (I also have

addison's disease.) I am 20 years old and I just want to have a

good time while abroad but I am sitting here so upset because I

don't know what to do. Dizziness is my main symptom. Can someone

please help!!! I'd appreciate it if you guys could relate. Thanks-

Confused in the UK

[Guest guest]

hi,

when I was getting really dizzy, I supplemented with iron and it went away

completely. perhaps you could get your level checked. good luck!

----Original Message Follows----

From: " ebjornseth " <bjornset@...>

Reply-hypothyroidism

hypothyroidism

Subject: help please!

Date: Sun, 25 Jan 2004 21:28:11 -0000

Hello,

It's been a while since I've posted here because I haven't been on

the internet in a while. My life has been a little hectic lately.

_________________________________________________________________

Check out the new MSN 9 Dial-up — fast & reliable Internet access with prime

features! http://join.msn.com/?pgmarket=en-us & page=dialup/home & ST=1

[Guest guest]

While I am not a physician, it sounds like Septic knee--- which can in some

cases be a manifestation of Lyme. Here are 2 articles about Septic Knee

including diagnosis and treatment. None the less, if it is septic knee prompt

treatment is critical.

http://www.emedicine.com/orthoped/TOPIC438.HTM

http://www.wheelessonline.com/ortho/septic_knee

Good luck. Hope these help. You can also google septic knee for more

information.

Carolyn

Barbara Spaulding <barbspaulding@...> wrote:

Has anyone ever seen Lyme manifest itself like this?

My 14 year old nephew lives in a Lyme endemic area and

has had headaches and fevers. What follows is my

sisters medical history, but in a nutshell he has

unexplained pain and swelling on his tibia right

around the growth plate. The IDS at the hospital of

course says 'there's no way it could be Lyme!' Thanks

to everyone who takes the time to read this and

respond! Barbara

His History...

My 14 year old son is a healthy 6’1”, 140 pound boy

involved in numerous activities such as basketball,

tennis, golf, and marching band. He also has grown

significantly over the past twelve to eighteen months.

He woke up on 2/23/08 with pain and swelling in his

upper right tibia. To his knowledge, he had not

experienced any injury or trauma to his leg. In

subsequent days, he periodically ran fevers of 100-102

degrees. For several days we treated him with Motrin

for the pain and fevers. A chronology follows:

On 2/27, visited the pediatrician. He was given

crutches, as Osgood-Schlatter was suspected.

On 3/3, visited an Orthopedic doctor. His leg was

X-rayed for possible stress fracture. X-ray came back

normal.

On 3/7, pediatrician drew blood for a culture. The

culture showed no growth. Pediatrician started him on

500 mg of Levaquin (He has an allergy to penicillin

and rocephin) to combat possible infection.

On 3/11, an MRI was done. It indicated osteomyelitis.

He was admitted to the Hospital on 3/12.

On 3/13, a bone biopsy was performed by a general

orthopedic surgeon to try and pinpoint the cause of

the indicated infection. Results of the biopsy

(received 3/15) showed a clean site with no

abnormalities. However, the site is near his growth

plate, and the surgeon was careful not to damage the

plate. He may not have extracted an adequate sample.

Also, the previous Levaquin treatment (3 days of

treatment) may have masked actual results.

Late in the day on 3/13, he was started on Vancomycin

(900 mg IV every 8 hours). This treatment lasted for

about one full day until biopsy results came back

negative and the decision was made to release him from

the hospital.

On 3/15 he was released from the hospital with no

antibiotic treatments at all so the doctors could

monitor “how the situation re-manifests itself”. At

this point, his pain was much reduced, however

swelling persisted as did the warmth of the site.

Orthopedic surgeon recommended crutches for three

weeks to let the biopsy site heal itself.

Weekly bloodwork thereafter revealed elevated ASO

titer levels (413, 386, and 376 respectively). All

CBC levels were within ranges.

On 4/3 a follow-up MRI revealed little change from the

first MRI done on 3/11.

On 4/7 a CT scan was completed. The radiologist’s

comments were as follows: 1) Moth-eaten mottled

spotty areas of resorption, subcortical and cortical

involving the proximal tibia of the right lower

extremity. There is periostitis, periosteal

calcification along the cortex anteromedially and

posteriorly. Findings most likely represent

osteomyelitis. There is evidence of previous bone

biopsy. 2) No evidence for osteoma. Continued

surveillance is recommended with follow-up imaging if

patient’s condition does not improve.

Local physician team (orthopedic surgeon, infectious

disease specialist, and pediatrician) recommends open

biopsy as the next course of action to pinpoint the

cause of the suspected infection.

On 4/9 we faxed 35 pages of documentation to

Children’s Hospital pediatric orthopedic surgeon, for

a second opinion.

On 4/11 Dr’s office left us a message recommending

that he should, in fact, have surgery. We are now

scheduled for a consultation on 4/21 with Dr's at

Children's Hospital. Dr. cannot perform his surgery

for at least 6 weeks.

In the meantime, his leg is still swollen and warm to

the touch. The pain has lessened, but is still

present. He has not taken pain medication or run a

fever in several weeks. He is no longer using

crutches.

Thanks again to anyone who might have some thoughts on

helping my nephew and his family!!

__________________________________________________________

Be a better friend, newshound, and

know-it-all with Mobile. Try it now.

http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

Carolyn Degnan, Pres/CEO

San Ramon Chamber of Commerce

12667 Alcosta Blvd, Ste 160

San Ramon, CA 94583

925-963-8938 (cell)

" Come Grow With Us "

[Guest guest]

In our area, I have had recent contact from a mother with a 15yo son whose

knees have been destroyed by Lyme (he is chronic and has had it for 5yrs+,

misdiagnosed and undertreated throughout). My own tibia at the top near the

knee has repetitively been swollen and at times tender to the touch. I know

it's kind of silly to ask - but has he been tested for lyme? I just heard from

another parent of a 13yo, whose daughter had a bulls eye last year and was

treated for 30 days, and then in the last few months significant symptoms

manifested (mostly encephalitic type)-- she's been taken to all the academic

hospitals including CHOP (Children's Hospital of University of Pennsylvania,

Phil,

Pa), and Dupont's hospital for children... all of whom diagnosed everything

but lyme -- and all only symptom-based diagnoses none causal. The father was

so disgusted because they wouldn't even try antibiotics to see if it would

make a difference -- he was infuriated (and frightened) and has found his way

to an LLMD. Not much, but hope it helps. -

**************Need a new ride? Check out the largest site for U.S. used car

listings at AOL Autos.

(http://autos.aol.com/used?NCID=aolcmp00300000002851)

[Guest guest]

Barb

to me it sounds like the osteomyelitis is on target BUT to be sure, next time

they have that area surgical--have them get samples to MDL labs in NJ ( call

first to ask how--they may want wax block or tissue tubes) and then the tissue

can be tested for TBDs too--insist the pathologist send it out or u may have to

claim the sample and you send it fedex--we had both situations with Evan's

spinal fluid and gastric biopsy!!

sometimes but rarely a Bartonella can manifest as shin lumps that look like

infections--but Im unsure if they also produce the bone changes described.

good luck

Finette

[ ] Help please!

Has anyone ever seen Lyme manifest itself like this?

My 14 year old nephew lives in a Lyme endemic area and

has had headaches and fevers. What follows is my

sisters medical history, but in a nutshell he has

unexplained pain and swelling on his tibia right

around the growth plate. The IDS at the hospital of

course says 'there's no way it could be Lyme!' Thanks

to everyone who takes the time to read this and

respond! Barbara

His History...

My 14 year old son is a healthy 6’1â€, 140 pound boy

involved in numerous activities such as basketball,

tennis, golf, and marching band. He also has grown

significantly over the past twelve to eighteen months.

He woke up on 2/23/08 with pain and swelling in his

upper right tibia. To his knowledge, he had not

experienced any injury or trauma to his leg. In

subsequent days, he periodically ran fevers of 100-102

degrees. For several days we treated him with Motrin

for the pain and fevers. A chronology follows:

On 2/27, visited the pediatrician. He was given

crutches, as Osgood-Schlatter was suspected.

On 3/3, visited an Orthopedic doctor. His leg was

X-rayed for possible stress fracture. X-ray came back

normal.

On 3/7, pediatrician drew blood for a culture. The

culture showed no growth. Pediatrician started him on

500 mg of Levaquin (He has an allergy to penicillin

and rocephin) to combat possible infection.

On 3/11, an MRI was done. It indicated osteomyelitis.

He was admitted to the Hospital on 3/12.

On 3/13, a bone biopsy was performed by a general

orthopedic surgeon to try and pinpoint the cause of

the indicated infection. Results of the biopsy

(received 3/15) showed a clean site with no

abnormalities. However, the site is near his growth

plate, and the surgeon was careful not to damage the

plate. He may not have extracted an adequate sample.

Also, the previous Levaquin treatment (3 days of

treatment) may have masked actual results.

Late in the day on 3/13, he was started on Vancomycin

(900 mg IV every 8 hours). This treatment lasted for

about one full day until biopsy results came back

negative and the decision was made to release him from

the hospital.

On 3/15 he was released from the hospital with no

antibiotic treatments at all so the doctors could

monitor “how the situation re-manifests itselfâ€. At

this point, his pain was much reduced, however

swelling persisted as did the warmth of the site.

Orthopedic surgeon recommended crutches for three

weeks to let the biopsy site heal itself.

Weekly bloodwork thereafter revealed elevated ASO

titer levels (413, 386, and 376 respectively). All

CBC levels were within ranges.

On 4/3 a follow-up MRI revealed little change from the

first MRI done on 3/11.

On 4/7 a CT scan was completed. The radiologist’s

comments were as follows: 1) Moth-eaten mottled

spotty areas of resorption, subcortical and cortical

involving the proximal tibia of the right lower

extremity. There is periostitis, periosteal

calcification along the cortex anteromedially and

posteriorly. Findings most likely represent

osteomyelitis. There is evidence of previous bone

biopsy. 2) No evidence for osteoma. Continued

surveillance is recommended with follow-up imaging if

patient’s condition does not improve.

Local physician team (orthopedic surgeon, infectious

disease specialist, and pediatrician) recommends open

biopsy as the next course of action to pinpoint the

cause of the suspected infection.

On 4/9 we faxed 35 pages of documentation to

Children’s Hospital pediatric orthopedic surgeon, for

a second opinion.

On 4/11 Dr’s office left us a message recommending

that he should, in fact, have surgery. We are now

scheduled for a consultation on 4/21 with Dr's at

Children's Hospital. Dr. cannot perform his surgery

for at least 6 weeks.

In the meantime, his leg is still swollen and warm to

the touch. The pain has lessened, but is still

present. He has not taken pain medication or run a

fever in several weeks. He is no longer using

crutches.

Thanks again to anyone who might have some thoughts on

helping my nephew and his family!!

__________________________________________________________

Be a better friend, newshound, and

know-it-all with Mobile. Try it now.

http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

[Guest guest]

isnt septic knee around the knee?? and it would appear as swelling/fluid in that

area as well. I think Barb is describing an area of shil just BELOW the

knee--plus the xray wouldve shown if fluid WAS around the knee joint!! and the

MRI wouldve confirmed it--instead the MRI confirmed bony changes hinting that

the " infection " was in the bone and not knee jt

finette

Re: [ ] Help please!

While I am not a physician, it sounds like Septic knee--- which can in some

cases be a manifestation of Lyme. Here are 2 articles about Septic Knee

including diagnosis and treatment. None the less, if it is septic knee prompt

treatment is critical.

http://www.emedicine.com/orthoped/TOPIC438.HTM

http://www.wheelessonline.com/ortho/septic_knee

Good luck. Hope these help. You can also google septic knee for more

information.

Carolyn

Barbara Spaulding <barbspaulding@...> wrote:

Has anyone ever seen Lyme manifest itself like this?

My 14 year old nephew lives in a Lyme endemic area and

has had headaches and fevers. What follows is my

sisters medical history, but in a nutshell he has

unexplained pain and swelling on his tibia right

around the growth plate. The IDS at the hospital of

course says 'there's no way it could be Lyme!' Thanks

to everyone who takes the time to read this and

respond! Barbara

His History...

My 14 year old son is a healthy 6’1â€, 140 pound boy

involved in numerous activities such as basketball,

tennis, golf, and marching band. He also has grown

significantly over the past twelve to eighteen months.

He woke up on 2/23/08 with pain and swelling in his

upper right tibia. To his knowledge, he had not

experienced any injury or trauma to his leg. In

subsequent days, he periodically ran fevers of 100-102

degrees. For several days we treated him with Motrin

for the pain and fevers. A chronology follows:

On 2/27, visited the pediatrician. He was given

crutches, as Osgood-Schlatter was suspected.

On 3/3, visited an Orthopedic doctor. His leg was

X-rayed for possible stress fracture. X-ray came back

normal.

On 3/7, pediatrician drew blood for a culture. The

culture showed no growth. Pediatrician started him on

500 mg of Levaquin (He has an allergy to penicillin

and rocephin) to combat possible infection.

On 3/11, an MRI was done. It indicated osteomyelitis.

He was admitted to the Hospital on 3/12.

On 3/13, a bone biopsy was performed by a general

orthopedic surgeon to try and pinpoint the cause of

the indicated infection. Results of the biopsy

(received 3/15) showed a clean site with no

abnormalities. However, the site is near his growth

plate, and the surgeon was careful not to damage the

plate. He may not have extracted an adequate sample.

Also, the previous Levaquin treatment (3 days of

treatment) may have masked actual results.

Late in the day on 3/13, he was started on Vancomycin

(900 mg IV every 8 hours). This treatment lasted for

about one full day until biopsy results came back

negative and the decision was made to release him from

the hospital.

On 3/15 he was released from the hospital with no

antibiotic treatments at all so the doctors could

monitor “how the situation re-manifests itselfâ€. At

this point, his pain was much reduced, however

swelling persisted as did the warmth of the site.

Orthopedic surgeon recommended crutches for three

weeks to let the biopsy site heal itself.

Weekly bloodwork thereafter revealed elevated ASO

titer levels (413, 386, and 376 respectively). All

CBC levels were within ranges.

On 4/3 a follow-up MRI revealed little change from the

first MRI done on 3/11.

On 4/7 a CT scan was completed. The radiologist’s

comments were as follows: 1) Moth-eaten mottled

spotty areas of resorption, subcortical and cortical

involving the proximal tibia of the right lower

extremity. There is periostitis, periosteal

calcification along the cortex anteromedially and

posteriorly. Findings most likely represent

osteomyelitis. There is evidence of previous bone

biopsy. 2) No evidence for osteoma. Continued

surveillance is recommended with follow-up imaging if

patient’s condition does not improve.

Local physician team (orthopedic surgeon, infectious

disease specialist, and pediatrician) recommends open

biopsy as the next course of action to pinpoint the

cause of the suspected infection.

On 4/9 we faxed 35 pages of documentation to

Children’s Hospital pediatric orthopedic surgeon, for

a second opinion.

On 4/11 Dr’s office left us a message recommending

that he should, in fact, have surgery. We are now

scheduled for a consultation on 4/21 with Dr's at

Children's Hospital. Dr. cannot perform his surgery

for at least 6 weeks.

In the meantime, his leg is still swollen and warm to

the touch. The pain has lessened, but is still

present. He has not taken pain medication or run a

fever in several weeks. He is no longer using

crutches.

Thanks again to anyone who might have some thoughts on

helping my nephew and his family!!

__________________________________________________________

Be a better friend, newshound, and

know-it-all with Mobile. Try it now.

http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

Carolyn Degnan, Pres/CEO

San Ramon Chamber of Commerce

12667 Alcosta Blvd, Ste 160

San Ramon, CA 94583

925-963-8938 (cell)

" Come Grow With Us "

[Guest guest]

Thank you to everyone who responded!! The dx right

now is osteomyelitis and he is having surgery at the

children's hospital to remove the infection and a bone

graph to repair the site. The surgeon has agreed to

test him for Lyme and Bartonella. The surgeon said

Lyme is best tested using a blood test (I encouraged

my sister to request they send the blood out to Igenex

but we'll see!). Finette, you mentioned sending a

sample to MDL, do you think this is necessary? The

surgeon also said they would be testing the bone for

all bacteria. I was confused why they can't look for

Lyme bacteria in bone but maybe its just too elusive??

Thanks again! Barb

________________________________________________________________________________\

____

Be a better friend, newshound, and

know-it-all with Mobile. Try it now.

http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

[Guest guest]

Barb

CALL MDL and ask them directly which tissues they can use for tests--and yes Id

do both Igenex and MDL--MDL better for Bart and for non blood tissues IMHO

and MDL has good history of working with pathologists all over the US too.--Once

you ask MDL about tissues and HOW they need it ( culture tube vs paraffin blocks

and what preservative or fixative) either get the info to the surgeon AND

pathologist at hospital where surgery is scheduled---OR ask if possibly the

pathology dept can contact MDL directly---they may balk

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=98500

in above, experimentally they used bone and joint tissue to culture Lyme

bacteria--proving it can be done but whether a lab will or not--again ask them!!

and when they say we will test for " all bacteria " ASK for the supposed

list--they told me that for spinal fluid and later his stomach biopsy and

my friend in Tampa's neck skin lesion and all 3 times they tested for a select

few " common " things--leaving out anything to do with TBDs!!!

I now never leave it to chance and ask for WHAT theyre going to culture

for---its not a matter of incubating and looking to see whats there--many

bacteria ( like Lyme) need specific culture and growing methods

good luck

Finette

Re: [ ] Help please!

Thank you to everyone who responded!! The dx right

now is osteomyelitis and he is having surgery at the

children's hospital to remove the infection and a bone

graph to repair the site. The surgeon has agreed to

test him for Lyme and Bartonella. The surgeon said

Lyme is best tested using a blood test (I encouraged

my sister to request they send the blood out to Igenex

but we'll see!). Finette, you mentioned sending a

sample to MDL, do you think this is necessary? The

surgeon also said they would be testing the bone for

all bacteria. I was confused why they can't look for

Lyme bacteria in bone but maybe its just too elusive??

Thanks again! Barb

__________________________________________________________

Be a better friend, newshound, and

know-it-all with Mobile. Try it now.

http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

[Guest guest]

My dd is taking a very small amount of Depakote because of an abnormal EEG. The

symptoms I see in her was racing, very odd behavour and mean mean mean. The

Depakote has helped the meaness and racing but she has tons of anxiety from the

meds. She cracks her finger knuckles and toe knuckles all day. She is so

agitated. Does anyone have any suggestions? The doctors weren't much help. They

thought is was wierd that this was happening on such a low dose (62mg). It

happens with everything I give her. She is so sensitive.

[Guest guest]

> My dd is taking a very small amount of Depakote because of an abnormal EEG.

The symptoms I see in her was racing, very odd behavour and mean mean mean. The

Depakote has helped the meaness and racing but she has tons of anxiety from the

meds. She cracks her finger knuckles and toe knuckles all day.

Knuckle cracking meant yeast in the joints for my #1.

Dana

[Guest guest]

racing, (as in running? of the frantic nature? yes?), mean, general

agitation...If I saw these types of things here, (first) would up the epsom

baths & look into the essential fatty acids/metabolism, then go from there.

elizabeth

>

> My dd is taking a very small amount of Depakote because of an abnormal EEG.

The symptoms I see in her was racing, very odd behavour and mean mean mean. The

Depakote has helped the meaness and racing but she has tons of anxiety from the

meds. She cracks her finger knuckles and toe knuckles all day. She is so

agitated. Does anyone have any suggestions? The doctors weren't much help. They

thought is was wierd that this was happening on such a low dose (62mg). It

happens with everything I give her. She is so sensitive.

>

[Guest guest]

My one son had this. Not a fun time. We found that some meds just work

backwards. For us, we used lots and lots and lots of yeast protocol, GF/cf diet

and GABA. The diet was important here because of the endomorphines that the

gluten and casien created were actually a big problem for him. Seem act like

Prescription meds seemed to fix one thing and cause 2 more. Chelation has also

done a lot. I would ask your dr if there is another med that he can use besides

depakote. And see if that helps. They tried risperdal and concerta here....and

those did help....but I just wasn't too hot on the problems it could cause down

the line. So he's not on any at the moment and doing well. But it took a lot

of work to get there.

hth

Ronni

>

> racing, (as in running? of the frantic nature? yes?), mean, general

agitation...If I saw these types of things here, (first) would up the epsom

baths & look into the essential fatty acids/metabolism, then go from there.

elizabeth

>

>

> >

> > My dd is taking a very small amount of Depakote because of an abnormal EEG.

The symptoms I see in her was racing, very odd behavour and mean mean mean. The

Depakote has helped the meaness and racing but she has tons of anxiety from the

meds. She cracks her finger knuckles and toe knuckles all day. She is so

agitated. Does anyone have any suggestions? The doctors weren't much help. They

thought is was wierd that this was happening on such a low dose (62mg). It

happens with everything I give her. She is so sensitive.

> >

>