New member

[Guest guest]

Hello,

If I do in fact have Lyme (haven't been diagnosed at this point), I was bit 20

years ago and can remember several of my symptoms going back as far as 19 years

ago. From what little research I've done, I have run into others with similar

stories going back as far as 15 or 20 years.

Hoping for remission for all of us,

lindamerkich <lindamerkich@...> wrote:

Hi KC,

I have had Lyme disease for 20 years now and I have never been in

remission. When you are in remission, does the extreme pain and

fatigue go away? I seriously cannot remember ever feeling good like I

did before I became infected! I keep hoping that someday I will be in

remission. For the first 15 years hwoever, I did pretty good. Even

though I hurt all the time and was tired alot, it was nothing near as

bad as the last three years have been. I am barely managing to keep

working and from the way it looks, I may end up on disability. I do

not even want to quit work because I am afraid I will just keep getting

worse from not getting up all the time and moving. I do exercise all

the time however, I can also sleep for days at a time. Good luck and I

pray your Lyme disease stays in remission!!

God Bless!

M.

[Guest guest]

You might want to check out the website below. I don't know if they

can help, but I guess it wouldn't hurt to try. Good luck.

http://uuhsc.utah.edu/rehabsvc/sci/SCI_mn.htm

Roni

On 6/8/07, jvanhoutensped <jvanhoutensped@...> wrote:

>

> Hello! My name is Jeannette Van Houten. I am an assistive technology

> specialist that is working with a young child with C-5 Spinal Cord

> Injury. I was asked to come up with some ideas that would be helpful

> with the following tasks:

>

> 1) hand writing. she has a computer but she wants to be able to write

> just like her peers. Does anyone have suggestions on possible writing

> tools. I have suggested:

> • Liquid Pencil (erasable)

> • Charcoal Pencil (erasable)

> • Chinese Pencil (not erasable)

> • Felt tip marker (not erasable)

> • Erasable pen (erasable)

>

> 2) Personal Hygiene: She would like to be able to wipe herself. Any

> suggestions would be helpful.

>

> Thank you in advance for any information you are willing to share. I

> can be reached privately at

jvanhoutensped@...<jvanhoutensped%40>or via the

> group.

>

> Jeannette Van Houten, M.Ed, ATP

> Curriculum - Assistive Technology Specialist

> jvanhouten@... <jvanhouten%40cpofnj.org>

> 1005 Whitehead Road Extension

> Suite 1

> Ewing NJ 08638

> tel: 609-882-4182 (530)

>

>

>

>

[Guest guest]

You might want to check out the website below. I don't know if they

can help, but I guess it wouldn't hurt to try. Good luck.

http://uuhsc.utah.edu/rehabsvc/sci/SCI_mn.htm

Roni

On 6/8/07, jvanhoutensped <jvanhoutensped@...> wrote:

>

> Hello! My name is Jeannette Van Houten. I am an assistive technology

> specialist that is working with a young child with C-5 Spinal Cord

> Injury. I was asked to come up with some ideas that would be helpful

> with the following tasks:

>

> 1) hand writing. she has a computer but she wants to be able to write

> just like her peers. Does anyone have suggestions on possible writing

> tools. I have suggested:

> • Liquid Pencil (erasable)

> • Charcoal Pencil (erasable)

> • Chinese Pencil (not erasable)

> • Felt tip marker (not erasable)

> • Erasable pen (erasable)

>

> 2) Personal Hygiene: She would like to be able to wipe herself. Any

> suggestions would be helpful.

>

> Thank you in advance for any information you are willing to share. I

> can be reached privately at

jvanhoutensped@...<jvanhoutensped%40>or via the

> group.

>

> Jeannette Van Houten, M.Ed, ATP

> Curriculum - Assistive Technology Specialist

> jvanhouten@... <jvanhouten%40cpofnj.org>

> 1005 Whitehead Road Extension

> Suite 1

> Ewing NJ 08638

> tel: 609-882-4182 (530)

>

>

>

>

[Guest guest]

>

> Hello everyone,

>

> Firstly, I must acknowledge how great this site is. The information

is plentyful and well organized, and Bee and others are so helpful in

answering member's questions. Wow!

==>Hi Lise. Welcome to our group. Sorry but I've run out of time this

morning; I have to get ready for work. A quick answer about your back

problems is that one of our members wrote to me offlist (he wished to

remain anonymous on the group) who had a diving accident 20 years ago

and was in a wheelchair. After 6 months on this program he was free of

pain for the first time and he thinks it is a great treatment for

anyone with spine problems.

Luv, Bee

[Guest guest]

> >

> > Hello everyone,

> >

> > Firstly, I must acknowledge how great this site is. The

information

> is plentyful and well organized, and Bee and others are so helpful

in

> answering member's questions. Wow!

>

> ==>Hi Lise. Welcome to our group. Sorry but I've run out of time

this

> morning; I have to get ready for work. A quick answer about your

back

> problems is that one of our members wrote to me offlist (he wished

to

> remain anonymous on the group) who had a diving accident 20 years

ago

> and was in a wheelchair. After 6 months on this program he was

free of

> pain for the first time and he thinks it is a great treatment for

> anyone with spine problems.

>

> Luv, Bee

>

[Guest guest]

> >

> Thank you for your reply Bee. It's encouraging to know that

someone

> with spinal problems has healed as a result of this program. I

still

> have alot of information to read on this site and hope to find some

> physical improvement by the new year. Do you know by any chance

how

> long it took the other person to start feeling better after

following

> the program?

==>Hi Lise. There is a lot to learn but it will be well worth it! I

do not know how long it took the other person to start feeling better

because he only wrote to me after being on my program for 6 months.

It takes 1 month of natural healing for every year you've been

unwell, and for most people nowadays that is since before they were

born. The timing starts once you are completely following the diet

and taking all of the supplements.

We are here for you Lise. We've all had to drastically change our

eating habits and life styles to get well, and it can be very tough.

It takes time, persistence, and patience.

Luv, Bee

[Guest guest]

Welcome to the group, daina. I don't think surgery is always the answer,

having had surgery and for me, it just brought on the next problem. But i do

think it is crucial to have a really great, smart, involved pain docter. I had

the same problem as you and my pain doctor who is amazing gave me a series of 3

epidurals and the pain is gone. Next up is the nerve that is being squeezed on

my right side. I think it is something to do with the disk. I have had two

epidurals so far. They have helped reduce the pain but not enough. Next up is

a radio frequency ablation. That is where they burn the nerve endings. I did

this once before and i was pain free for about six months and it was heaven.

All i am saying is that surgery should be a last resort when you have explored

everything else including non-invasive surgery. Good luck. Marsha

Sent via BlackBerry from T-Mobile

New Member

Hi Everyone,

I'm brand new to this group and I'm hoping I can get some

support, ideas, etc.

I have a herniated disc (L5-S1). I've had it for atleast 17yrs w/o much

trouble. Until June of 07. I had so much pain that I could barely walk.

I went to my orthopedic surgeon who gave me pain meds and a cortisone

shot. Majority of my pain is not in my back...its in my left hip/leg.

I went to see a spinal surgeon who recommended phsyical therapy and

Eppedural steroid injections in my back. I've had 3 and still no

relief. Somedays are better than others. I work in an office and the

continous standing/sitting is very painful. I have an appt with another

spinal surgeon for a 2nd opinion. Surgery may be my only option!

Physical therapy was extremely costly and I've been doing alot of

exercises at home.

I'm 48 yrs old and somedays I feel like I'm 80. Its hard to get out of

bed and just be mobile. My husband is supportive to a point but I guess

unless you have back issues its hard to understand how bad I feel

sometimes.

I'd like to see my options for surgery. I'm not quite sure what type it

would be. Or anything like recovery time, etc.

Thank you for listening.

Daina

[Guest guest]

---have you tried Phsical therapy? It worked very well for me. They

also did traction. Check into it with a good pt. See if that helps

before considering surgery.

, OKC

[Guest guest]

Hi Faye,

Welcome to the group. I hope you are able to find information here

that will be of use to you. If nothing else...it is great to meet

other adults who understand what you are going through.

From what you described I think it would be unusual for you to be

expereincing flatback....but not impossible. Of course I am not a

doctor nor do I have any medical knowledge...but generally doctors

understood what the risks were for putting a patient into flatback (as

a result of surgery) by the mid ninties. They tended to use a " new

generation " rod that was contoured to maintain lordosis, and/or not

fuse into the lumbar spine. What does seem to be common for man

patients as they age is accelerated degeneration on the discs below

the fusion. I hope you are able to find a doctor with experience in

helping you figure out what is going on with you.

As a general listing of ways some folks help resolve or amend their

pain levels with long fusions a lot of folks have found that

strenghtening and stretching help, as does maintaining a good weight.

I had an epidural too, and didn't find it to be very long lasting....I

thought it was kind of like putting a bandaid on a deep laceration!

Do you have a choice of doctors with experience in adult scoli patients?

Again, welcome!

Take Care, Cam

[Guest guest]

hi

sorry you have suffered so---many of us have. you can take control of your

health again though. read a bit on http://www.stopthethyroidmadness.com

http://www.optimox.com (iodine is very important)

ask questions. glad you are here.

Gracia

who loves to cook too.

Hi,

My name is , I am 28 years old, and I reside in Phoenix, AZ.

Throughout the years, I have suffered from differing and various odd

symptoms that I was never able to put my finger on. I would always

visit my primary care doctor, who would run blood tests, and always

tell me I was fine. Back in June of this year, I was working at a

brand new job that I was very excited to have gotten. I was there

two weeks, it was a new restaurant set to open, and I had a position

back in the kitchen. It was something I really wanted, since I had

also gone to Culinary school and graduated in 09/2006. I was working

basically non stop, with only two days off (not consecutively) in a

matter of 15 or 16 days. I left work on a Tuesday, and was to have

the next day off. That night, my body began to rebel against me, and

for the next seven days, I was completely physically unable to do

anything, not even get up to eat, or get myself a drink. I went to

the doctor, who did blood tests. She also wrote me a note. Long

story short, I ended up losing my job, and then my doctor tells me

all my blood results were fine. I insisted on a referral to a

rheumatologist, and he thought I could be suffering with something

related to Chronic Fatigue Syndrome or something autoimmune. Blood

work was done, and I just learned five days ago that blood results

came back as anemic, low thyroid levels, exposure to Epstein-Barr,

and the levels in my blood showed inflammatory issues. I yet for a

follow up with the rheumatologist (which I plan to remedy soon), so I

don't have a definite and/or clear diagnosis. I have done some

research on hypothyroidism, and I can see that alot of things now

make sense for me. I have one cousin (first, on my mother's side)

who suffers from Hasimoto's Hypothyroidism, and I've seen it tear her

apart. I just don't know what to think, or what to do, as all of

this is new and overwhelming to me. Just wanted to take the time to

introduce my self and let everyone know about me. Thanks for reading

and I look forward to future correspondence.

[Guest guest]

Hi , I am sorry to hear about the job situation.? I have lost jobs too due

to my hypothyroidism.? I hope things get worked out for you so you feel better.?

A job will come along.? Best wishes for your improving health.-Sandy

New Member

Hi,

My name is , I am 28 years old, and I reside in Phoenix, AZ.

Throughout the years, I have suffered from differing and various odd

symptoms that I was never able to put my finger on. I would always

visit my primary care doctor, who would run blood tests, and always

tell me I was fine. Back in June of this year, I was working at a

brand new job that I was very excited to have gotten. I was there

two weeks, it was a new restaurant set to open, and I had a position

back in the kitchen. It was something I really wanted, since I had

also gone to Culinary school and graduated in 09/2006. I was working

basically non stop, with only two days off (not consecutively) in a

matter of 15 or 16 days. I left work on a Tuesday, and was to have

the next day off. That night, my body began to rebel against me, and

for the next seven days, I was completely physically unable to do

anything, not even get up to eat, or get myself a drink. I went to

the doctor, who did blood tests. She also wrote me a note. Long

story short, I ended up losing my job, and then my doctor tells me

all my blood results were fine. I insisted on a referral to a

rheumatologist, and he thought I could be suffering with something

related to Chronic Fatigue Syndrome or something autoimmune. Blood

work was done, and I just learned five days ago that blood results

came back as anemic, low thyroid levels, exposure to Epstein-Barr,

and the levels in my blood showed inflammatory issues. I yet for a

follow up with the rheumatologist (which I plan to remedy soon), so I

don't have a definite and/or clear diagnosis. I have done some

research on hypothyroidism, and I can see that alot of things now

make sense for me. I have one cousin (first, on my mother's side)

who suffers from Hasimoto's Hypothyroidism, and I've seen it tear her

apart. I just don't know what to think, or what to do, as all of

this is new and overwhelming to me. Just wanted to take the time to

introduce my self and let everyone know about me. Thanks for reading

and I look forward to future correspondence.

[Guest guest]

Thank you.  I am in the process of looking for new job.  I will be having my

first appointment with my rheumatologist Wednesday since finding out blood

results last Thursday.  What upsets me most is that my doctor(s) for years did

blood work and never picked this up.  I've heard that docs can sometimes have

their own opinions on how to interpret blood test results.  I also think that

the state of healthcare in our country is terrible and needs vast improvement. 

From: lenosan@... <lenosan@...>

Subject: Re: New Member

hypothyroidism

Date: Monday, July 7, 2008, 3:49 PM

Hi , I am sorry to hear about the job situation.? I have lost jobs too due

to my hypothyroidism. ? I hope things get worked out for you so you feel

better.? A job will come along.? Best wishes for your improving health.-Sandy

New Member

Hi,

My name is , I am 28 years old, and I reside in Phoenix, AZ.

Throughout the years, I have suffered from differing and various odd

symptoms that I was never able to put my finger on. I would always

visit my primary care doctor, who would run blood tests, and always

tell me I was fine. Back in June of this year, I was working at a

brand new job that I was very excited to have gotten. I was there

two weeks, it was a new restaurant set to open, and I had a position

back in the kitchen. It was something I really wanted, since I had

also gone to Culinary school and graduated in 09/2006. I was working

basically non stop, with only two days off (not consecutively) in a

matter of 15 or 16 days. I left work on a Tuesday, and was to have

the next day off. That night, my body began to rebel against me, and

for the next seven days, I was completely physically unable to do

anything, not even get up to eat, or get myself a drink. I went to

the doctor, who did blood tests. She also wrote me a note. Long

story short, I ended up losing my job, and then my doctor tells me

all my blood results were fine. I insisted on a referral to a

rheumatologist, and he thought I could be suffering with something

related to Chronic Fatigue Syndrome or something autoimmune. Blood

work was done, and I just learned five days ago that blood results

came back as anemic, low thyroid levels, exposure to Epstein-Barr,

and the levels in my blood showed inflammatory issues. I yet for a

follow up with the rheumatologist (which I plan to remedy soon), so I

don't have a definite and/or clear diagnosis. I have done some

research on hypothyroidism, and I can see that alot of things now

make sense for me. I have one cousin (first, on my mother's side)

who suffers from Hasimoto's Hypothyroidism, and I've seen it tear her

apart. I just don't know what to think, or what to do, as all of

this is new and overwhelming to me. Just wanted to take the time to

introduce my self and let everyone know about me. Thanks for reading

and I look forward to future correspondence.

[Guest guest]

Thank you, I will check that out.

 

From: Gracia <circe@...>

Subject: Re: New Member

hypothyroidism

Date: Monday, July 7, 2008, 3:27 PM

hi

sorry you have suffered so---many of us have. you can take control of your

health again though. read a bit on http://www.stopthet hyroidmadness. com

http://www.optimox. com (iodine is very important)

ask questions. glad you are here.

Gracia

who loves to cook too.

Hi,

My name is , I am 28 years old, and I reside in Phoenix, AZ.

Throughout the years, I have suffered from differing and various odd

symptoms that I was never able to put my finger on. I would always

visit my primary care doctor, who would run blood tests, and always

tell me I was fine. Back in June of this year, I was working at a

brand new job that I was very excited to have gotten. I was there

two weeks, it was a new restaurant set to open, and I had a position

back in the kitchen. It was something I really wanted, since I had

also gone to Culinary school and graduated in 09/2006. I was working

basically non stop, with only two days off (not consecutively) in a

matter of 15 or 16 days. I left work on a Tuesday, and was to have

the next day off. That night, my body began to rebel against me, and

for the next seven days, I was completely physically unable to do

anything, not even get up to eat, or get myself a drink. I went to

the doctor, who did blood tests. She also wrote me a note. Long

story short, I ended up losing my job, and then my doctor tells me

all my blood results were fine. I insisted on a referral to a

rheumatologist, and he thought I could be suffering with something

related to Chronic Fatigue Syndrome or something autoimmune. Blood

work was done, and I just learned five days ago that blood results

came back as anemic, low thyroid levels, exposure to Epstein-Barr,

and the levels in my blood showed inflammatory issues. I yet for a

follow up with the rheumatologist (which I plan to remedy soon), so I

don't have a definite and/or clear diagnosis. I have done some

research on hypothyroidism, and I can see that alot of things now

make sense for me. I have one cousin (first, on my mother's side)

who suffers from Hasimoto's Hypothyroidism, and I've seen it tear her

apart. I just don't know what to think, or what to do, as all of

this is new and overwhelming to me. Just wanted to take the time to

introduce my self and let everyone know about me. Thanks for reading

and I look forward to future correspondence.

[Guest guest]

hi Kathy

you need thyroid meds but first I think you need REAL iodine/iodide--do not

depend upon salt for this. join the iodine group on .

http://www.optimox.com

Gracia

I've been reading posts for awhile, trying to educate myself as

quickly as possible. Sometimes it feels a bit overwhelming; I would

greatly appreciate any responses at all that you might have to offer.

I have not been diagnosed, but I'm having lots of problems with

almost all of the symptoms on the hypo-thyroid checklist. My doctor

does not seem to want to deal with thyroid and I don't know if I

should change dr's or what? I need more education to make that

decision.

My grandmother had her thyroid removed, and my sister is currently

medicated for hypo-thyroid. I was given sinthroid when I was a teen

for hypo-thyroid, but after moving to another state 30 years ago the

doctors here did not continue that medication.

I'm 56 years old now and I've been having considerable weight gain,

hair loss, plus I've had gallbladder removed, hysterectomy, am

medicated for high blood pressure and now my cholesterol is getting

too high. I've been taking my wake-up temp everyday for a week, and

it's usually right at 96.5, with the highest being one morning at

97.2.

My TSH was done July 17th and came back at 4.85, but I wasn't given

any numbers for FREE T3 or FREE T4. I've always had problems with

constipation, dry skin and rashes, 'weak' hair and nails, irregular

monthly cycles.

I quit using iodized salt years ago, but now I'm thinking maybe I

should go back. I throw-up every time I eat shrimp, unless I only

have a few small-sized along with other foods. Once I had shrimp the

day before a blood test and they said my TSH numbers were out of

normal range. Does anybody here have an understanding of what that

might mean? I'm just learning, and some of this is still over my

head.

Thanks in advance for any helpful information you are willing to

share!!

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

No virus found in this incoming message.

Checked by AVG.

Version: 7.5.524 / Virus Database: 270.5.10/1584 - Release Date: 7/31/2008

12:00 PM

[Guest guest]

Hi Kathy,

Since it runs in your family and you were once on meds, I would look for a

new Doctor. I don't understand why he would not give you more tests. You

need to have more that just the TSH.

Betty

New Member

> I've been reading posts for awhile, trying to educate myself as

> quickly as possible. Sometimes it feels a bit overwhelming; I would

> greatly appreciate any responses at all that you might have to offer.

> I have not been diagnosed, but I'm having lots of problems with

> almost all of the symptoms on the hypo-thyroid checklist. My doctor

> does not seem to want to deal with thyroid and I don't know if I

> should change dr's or what? I need more education to make that

> decision.

> My grandmother had her thyroid removed, and my sister is currently

> medicated for hypo-thyroid. I was given sinthroid when I was a teen

> for hypo-thyroid, but after moving to another state 30 years ago the

> doctors here did not continue that medication.

> I'm 56 years old now and I've been having considerable weight gain,

> hair loss, plus I've had gallbladder removed, hysterectomy, am

> medicated for high blood pressure and now my cholesterol is getting

> too high. I've been taking my wake-up temp everyday for a week, and

> it's usually right at 96.5, with the highest being one morning at

> 97.2.

> My TSH was done July 17th and came back at 4.85, but I wasn't given

> any numbers for FREE T3 or FREE T4. I've always had problems with

> constipation, dry skin and rashes, 'weak' hair and nails, irregular

> monthly cycles.

> I quit using iodized salt years ago, but now I'm thinking maybe I

> should go back. I throw-up every time I eat shrimp, unless I only

> have a few small-sized along with other foods. Once I had shrimp the

> day before a blood test and they said my TSH numbers were out of

> normal range. Does anybody here have an understanding of what that

> might mean? I'm just learning, and some of this is still over my

> head.

> Thanks in advance for any helpful information you are willing to

> share!!

>

>

[Guest guest]

Kathy,

You wrote:

>

> ... I quit using iodized salt years ago, but now I'm thinking maybe I

> should go back. I throw-up every time I eat shrimp, unless I only

> have a few small-sized along with other foods....

First, there is no connection between allergy to shell fish and

sensitivity to iodine. This is a myth. The first is a true allergic

reaction to characteristic proteins in the sea food, and the other is a

haptan mediated reaction. It is possible to have both, but this is

relatively rare.

Secondly, the amount of iodine in seafood and in iodized salt is not

enough to trigger sensitivity reactions, which require 1-3 mg per day.

You would be lucky to get the RDA of 0.15 mg from salt and seafood alone.

I am usually skeptical about iodine deficiencies, but if you live in a

low iodine region (the goiter belt) and have been avoiding sources of

iodine, you could well be deficient. I would suggest not going beyond 1

mg per day unless you are sure you are not sensitive.

The TSH test is confirming that you need thyroid medication. Don't wait

to get it. Even with relatively mild symptoms, you could be doing damage

to other organs besides your hair and skin.

Chuck

[Guest guest]

I would ask for a complete thyroid panel, and make sure it includes free

T3. Then post the results here, being sure to include the ranges. You

seem to have lots of hypo symptoms; however the fact it that most if not

all of those are also symptoms of other problems. Be aware that

hypothyroidism is a hormone problem, and the possible interactions of

hormones are a vast number, so it's sometimes/often not an easy problem

to solve.

Try to evaluate how well your doctor seems to work with you once the

results are back. We've had quite a number of people here who do not

seem to respond to standard treatment in the expected manner. There's

at least some anecdotal evidence that an extended period of lack of

treatment may contribute to difficulties in treating at a later date

using the standard allopathic procedures. There's also the same for the

fact that those on T3 [in addition to T4] may need a TSH level below the

bottom of the standard range, even approaching zero in some cases.

Best,

> I've been reading posts for awhile, trying to educate myself as

> quickly as possible. Sometimes it feels a bit overwhelming; I would

> greatly appreciate any responses at all that you might have to offer.

> I have not been diagnosed, but I'm having lots of problems with

> almost all of the symptoms on the hypo-thyroid checklist. My doctor

> does not seem to want to deal with thyroid and I don't know if I

> should change dr's or what? I need more education to make that

> decision.

> My grandmother had her thyroid removed, and my sister is currently

> medicated for hypo-thyroid. I was given sinthroid when I was a teen

> for hypo-thyroid, but after moving to another state 30 years ago the

> doctors here did not continue that medication.

> I'm 56 years old now and I've been having considerable weight gain,

> hair loss, plus I've had gallbladder removed, hysterectomy, am

> medicated for high blood pressure and now my cholesterol is getting

> too high. I've been taking my wake-up temp everyday for a week, and

> it's usually right at 96.5, with the highest being one morning at

> 97.2.

> My TSH was done July 17th and came back at 4.85, but I wasn't given

> any numbers for FREE T3 or FREE T4. I've always had problems with

> constipation, dry skin and rashes, 'weak' hair and nails, irregular

> monthly cycles.

> I quit using iodized salt years ago, but now I'm thinking maybe I

> should go back. I throw-up every time I eat shrimp, unless I only

> have a few small-sized along with other foods. Once I had shrimp the

> day before a blood test and they said my TSH numbers were out of

> normal range. Does anybody here have an understanding of what that

> might mean? I'm just learning, and some of this is still over my

> head.

> Thanks in advance for any helpful information you are willing to

> share!!

[Guest guest]

I have a friend here in Wisconsin with a child being treated by Dr who

wants to locate an LLMD nearby. The cost of travel for them to Connecticut

is a biggie.

Who was your doctor in Ill and who is the one in Wisconsin. Please email me

off list if you don't want to publish it here

msadams@...

Thanks

> [ ] New member

>

> Hi!

>

> My name is . I live in Wisconsin. Pam, who joined just

> recently told me about the list. I know her from another list :-)

> I was diagnosed with chronic Lyme in June. My first doctor, actually

> my gynecologist treated me only for 2 weeks with 200mg of doxycycline.

> I did feel better, but my symptoms came back. I got more informed

> about Lyme Disease and found out what I need to do to receive proper

> treatment. I do not remember being bitten by a tick recently. The last

> time was in my early teenage years...I am 30 now. Last summer I had a

> few days of fever following a stiff neck, panic attacks, dizziness,

> cramps etc. It turned out that at that time I was infected with EBV

> (mononucleosis, which I believe activated my Lyme. I did not have

> symptoms prior. Since July of last year until June this year I kept

> going from doctor to doctor until my gynecologist diagnosed me. I had

> found a great LLMD in Illinois who helped me a great deal and who

> still is. Now I have found a LLMD in Wisconsin, the same one Pam is

> seeing too, who is much closer to me. I started antibiotics again

> beginning of August. Three days a week I take 400mg doxycycline daily

> and 4 days a week I take 1000mg Cefuroxime (Ceftin. I must say I feel

> soooo much better. I am so happy! Let's hope it stays this way.

> I joined, just like Pam, to have some more discussion and support.

> Thanks.

>

>

> ------------------------------------

>

> The book, Cure Unknown: Inside the Lyme Epidemic by Pamela

> Weintraub is now

> available for purchase. Please visit the official website at

> http://cureunknown.com/index.html for more information.

>

> For free up to date information about Lyme disease and the known

> co-infections delivered to your email address see:

> Robynns_Lyme_List/

>

[Guest guest]

Dr. Stephan is great; one of the few enlightened Infectioous Disease Docs.

He's the

head of the ID department at SMDC in Duluth.

>

> I have a friend here in Wisconsin with a child being treated by Dr who

> wants to locate an LLMD nearby. The cost of travel for them to Connecticut

> is a biggie.

>

> Who was your doctor in Ill and who is the one in Wisconsin. Please email me

> off list if you don't want to publish it here

>

> msadams@...

>

> Thanks

>

>

[Guest guest]

Hi Kenda,

I am just going through the diagnosis stage myself and saw a Lyme

literate physician in Seattle one week ago.

I had acute Lyme in 2003 after pulling a tick off my leg. I thought I

did everything " right " . I got onto antibiotics within a few days of

symptoms appearing (probably 12 days after the bite) and I insisted on a

test (ELISA) which came back positive and I bullied my west coast

non-Lyme literate doctor into giving me 4 weeks of antibiotics rather

than the 2-3 he thought appropriate.

The antibiotics then seemed to do their job. After a few days, I had no

symptoms for the remainder of the 30 day ABX course and then I continued

to be well for the next five years before suddenly coming down with

Lyme-type symptoms last May.

My LLMD told me that I had been undertreated for Lyme in 2003. I was

allergic to doxycline, so I was given 500 mg of amoxicillin twice a day.

My LLMD told me that even in 2003 I should have been taking the

amoxicillin three times a day, not twice, and that LLMD's these days

feel that much higher levels of ABX in the blood are necessary.

Therefore, he felt than an appropriate dose of ABX would have been 1,000

mg three times a day.

My LLMD feels that the initial ABX knocked down the Lyme so that my

immune system could take over for a while, but that over time or with an

unusual stress, or any other event that could lower the immune system

(in my case it was using topical steroids), the remaining Lyme organisms

get the upper hand.

So....if you didn't take enough doxycyline for a long enough time, I

would be very concerned that you have Lyme re-emerging. People who don't

catch Lyme early (and you are no longer early) need to take ABX for

longer than a month.

Regarding tests, I will let someone else answer more thoroughly as I am

not so knowledgeable, but I do know you probably need to get the test

done at a lab that specializes in Lyme, such as IGeniX.

I hope someone else can answer your question about a LLMD in your area,

because you will want one!

Maureen

[Guest guest]

I would recommend the Lyme Western Blot IgG and IgM (two tests) from IGeneX

for starters. You can find out more about IGeneX ant www.igenex.com .

They report ALL Lyme bands.

Good luck.

On Fri, Sep 12, 2008 at 12:17 PM, Maureen Havenner <havenner@...>wrote:

> Hi Kenda,

>

> I am just going through the diagnosis stage myself and saw a Lyme

> literate physician in Seattle one week ago.

>

> I had acute Lyme in 2003 after pulling a tick off my leg. I thought I

> did everything " right " . I got onto antibiotics within a few days of

> symptoms appearing (probably 12 days after the bite) and I insisted on a

> test (ELISA) which came back positive and I bullied my west coast

> non-Lyme literate doctor into giving me 4 weeks of antibiotics rather

> than the 2-3 he thought appropriate.

>

> The antibiotics then seemed to do their job. After a few days, I had no

> symptoms for the remainder of the 30 day ABX course and then I continued

> to be well for the next five years before suddenly coming down with

> Lyme-type symptoms last May.

>

> My LLMD told me that I had been undertreated for Lyme in 2003. I was

> allergic to doxycline, so I was given 500 mg of amoxicillin twice a day.

> My LLMD told me that even in 2003 I should have been taking the

> amoxicillin three times a day, not twice, and that LLMD's these days

> feel that much higher levels of ABX in the blood are necessary.

> Therefore, he felt than an appropriate dose of ABX would have been 1,000

> mg three times a day.

>

> My LLMD feels that the initial ABX knocked down the Lyme so that my

> immune system could take over for a while, but that over time or with an

> unusual stress, or any other event that could lower the immune system

> (in my case it was using topical steroids), the remaining Lyme organisms

> get the upper hand.

>

> So....if you didn't take enough doxycyline for a long enough time, I

> would be very concerned that you have Lyme re-emerging. People who don't

> catch Lyme early (and you are no longer early) need to take ABX for

> longer than a month.

>

> Regarding tests, I will let someone else answer more thoroughly as I am

> not so knowledgeable, but I do know you probably need to get the test

> done at a lab that specializes in Lyme, such as IGeniX.

>

> I hope someone else can answer your question about a LLMD in your area,

> because you will want one!

>

>

> Maureen

>

>

[Guest guest]

Hi kenda, I had to reply. Im near tulsa too, would love to talk.thanks Email me

camnchloe@...

christie

[ ] New Member

Hi, my name is Kenda and I am new here.

I have not been diagnosed with Lyme but following a tick bite in June my ND

decided to

treat me because I was having Lyme-type symptoms about three weeks after the

bite.

My symptoms completely disappeared within a few days. I was treated with doxy

for two

weeks. Last week I started developing a strange fatigue and almost depression

-- I have

never been depressed. As the days following I started developing terrible body

aches

and pains, both muscular and joint. Following normal workouts I would be very

sore. I

started feeling very cold, my jaw began hurting, my neck became very stiff and

sore and

I began having migraines. My doctor once again put me on Doxy but for a month

and

ran a Lyme test. The test is a Lyme Ab/Western Blot/Reflex from LabCorp. The

test was

negative but I'm confused at to what was really run. It says Lyme IgG/IgM Abb

negative.

My doctor and I are not convinced I am truly negative. Can you tell me what

tests we

should order?

I am slowly improving but I am still very achy. In all of my reading it says

there is a

better chance of cure with early treatment. What is considered early treatment?

Also, I

live near Tulsa, Oklahoma. Does anyone know of a LLMD here?

Thank you for your help!

Kenda

[Guest guest]

Hi kenda, I live near tulsa also. Would love to talk to you. Email me if you'd

like

camnchloe@...

christie

[ ] New Member

Hi, my name is Kenda and I am new here.

I have not been diagnosed with Lyme but following a tick bite in June my ND

decided to

treat me because I was having Lyme-type symptoms about three weeks after the

bite.

My symptoms completely disappeared within a few days. I was treated with doxy

for two

weeks. Last week I started developing a strange fatigue and almost depression

-- I have

never been depressed. As the days following I started developing terrible body

aches

and pains, both muscular and joint. Following normal workouts I would be very

sore. I

started feeling very cold, my jaw began hurting, my neck became very stiff and

sore and

I began having migraines. My doctor once again put me on Doxy but for a month

and

ran a Lyme test. The test is a Lyme Ab/Western Blot/Reflex from LabCorp. The

test was

negative but I'm confused at to what was really run. It says Lyme IgG/IgM Abb

negative.

My doctor and I are not convinced I am truly negative. Can you tell me what

tests we

should order?

I am slowly improving but I am still very achy. In all of my reading it says

there is a

better chance of cure with early treatment. What is considered early treatment?

Also, I

live near Tulsa, Oklahoma. Does anyone know of a LLMD here?

Thank you for your help!

Kenda

[Guest guest]

Thank you, Maureen. This is all so frightening. My MD thought I was crazy

for insisting on being tested after being treated for Lyme for 14 days and

decided he didn't want me as a patient after 16 years when I insisted on the

Western Blot test. I love my ND but he is not covered under my insurance

plan so when I need blood work done I try to use my MD for that. I need a

new MD, one who specializes in Lyme.

Does anyone know what the recommended dose of Doxy is?

Maureen, how long was your tick attached?

I really appreciate your help!

Kenda

> Hi Kenda,

>

> I am just going through the diagnosis stage myself and saw a Lyme

> literate physician in Seattle one week ago.

>

> I had acute Lyme in 2003 after pulling a tick off my leg. I thought I

> did everything " right " . I got onto antibiotics within a few days of

> symptoms appearing (probably 12 days after the bite) and I insisted on a

> test (ELISA) which came back positive and I bullied my west coast

> non-Lyme literate doctor into giving me 4 weeks of antibiotics rather

> than the 2-3 he thought appropriate.

>

> The antibiotics then seemed to do their job. After a few days, I had no

> symptoms for the remainder of the 30 day ABX course and then I continued

> to be well for the next five years before suddenly coming down with

> Lyme-type symptoms last May.

>

> My LLMD told me that I had been undertreated for Lyme in 2003. I was

> allergic to doxycline, so I was given 500 mg of amoxicillin twice a day.

> My LLMD told me that even in 2003 I should have been taking the

> amoxicillin three times a day, not twice, and that LLMD's these days

> feel that much higher levels of ABX in the blood are necessary.

> Therefore, he felt than an appropriate dose of ABX would have been 1,000

> mg three times a day.

>

> My LLMD feels that the initial ABX knocked down the Lyme so that my

> immune system could take over for a while, but that over time or with an

> unusual stress, or any other event that could lower the immune system

> (in my case it was using topical steroids), the remaining Lyme organisms

> get the upper hand.

>

> So....if you didn't take enough doxycyline for a long enough time, I

> would be very concerned that you have Lyme re-emerging. People who don't

> catch Lyme early (and you are no longer early) need to take ABX for

> longer than a month.

>

> Regarding tests, I will let someone else answer more thoroughly as I am

> not so knowledgeable, but I do know you probably need to get the test

> done at a lab that specializes in Lyme, such as IGeniX.

>

> I hope someone else can answer your question about a LLMD in your area,

> because you will want one!

>

>

> Maureen

[Guest guest]

Kenda,

How long the tick was attached is exactly one of the earliest questions

my LLMD asked. I was in Cape Cod and got up one morning, had breakfast &

hadn't gone outside yet when I noticed the engorged tick on my leg.

Clearly, it had been on overnight at minimum. And despite having been

warned by my in-laws about checking for ticks and the proper way to

remove them, I was so disgusted when I saw it that I just grabbed it and

pulled it out.

I am currently scheduled to get the Western Blot test, but my LLMD

wanted me on three weeks of Biaxin first, he said to " provoke an immune

reaction " that might not show up otherwise in the Western Blot since it

is clear I have had symptoms for some time and the immune system can be

tricked by lyme into not creating antibodies. He said the biaxin would

kill one of three forms of Lyme--the inner cell kind-- and that the

cells would then eject the dead material causing the immune system to be

able to react to it and the test therefore be more accurate. So...I am

into week two of Biaxin...had a herx-type reaction on day 5 of

Biaxin...and am a couple more weeks off from getting test results.

Either way, I am satisfied with a clinical diagnosis from my LLMD.

Ironic, because my son has been treated now for 2 years and 4 months by

Dr. Ray for chronic lyme. I know the symptoms, but despite

all the research I had done for his illness, and despite the fact that I

knew many of my symptoms " matched " , I also believed that I didn't know

how many other potential illnesses were out there as well with my

complex of symptoms. And, having been completely well for five years

after my Lyme, I told myself that it couldn't possibly be...So, I went

from specialist to specialist, all of whom gave me a clean bill of

health whilst scratching their heads about the total list of my

symptoms. Nobody recognized the " pattern " until I reached the LLMD who

was very familiar indeed with all of my symptoms.

My LLMD doctor said that in his practice 90% of his patients get 90%

better, so do get treatment, and do not despair. (And my acknowledgments

to all those out in the lyme world who still continue to suffer...I know

treatment doesn't work for everyone.)

Maureen