New member

Report post · September 13, 2008

SGF, MO there is a LLMD.

_____

From: [mailto: ] On Behalf

Of olliebluekitty

Sent: Friday, September 12, 2008 8:36 AM

Subject: [ ] 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

Report post · September 13, 2008

Kenda,

The recommended dosage of doxycycline is 200 mg twice per day.

On Fri, Sep 12, 2008 at 3:27 PM, Kenda Skaggs <oliverblue@...> wrote:

> 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

>

Report post · September 13, 2008

Hi Kenda,

what may help you finding an LLMD is the following link:

www.lymediseaseassociation.org

There is a link on the left side that says " Doctor Referral " . This is

how I started out. There may not be someone listed real close to you,

but it is a start. My first LLMD was 5hours away in Illinois (I'm in

Wisconsin). He helped me a great deal....and now I have found someone

much closer to me.

Good luck!!

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

>

> Thank you for your help!

>

> Kenda

>

Report post · September 13, 2008

Maureen, Your experience was exactly like mine.....seeing the

engorged tick on my leg, I yanked it off and put it down the kitchen

drain, rather than removing it carefully and preserving it in

alcohol. I knew better, but acted in haste.

A week later, I had developed a red ring around the site of the

bite. It wasn't a perfect bulls-eye, but did match some of the

pictures found on the internet. Enough so that my doctor (not an

LLMD) felt it was almost certainly lyme, because the red ring was

continuing to expand -- a fairly reliable indicator of lyme.

I never did experience any other symptoms, but it took almost the

entire 3 weeks of doxy treatment before the red ring disappeared.

The doctor felt that the three weeks of doxy had wiped out the lyme,

but I can't help expecting the other shoe to drop some day. Every

time I feel unexpectedly tired, or get a joint twinge, I think " Oh

oh, can that be lyme again? "

Dottie

>

> 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.

>

Report post · September 13, 2008

Hi, Maureen,

My tick was attached for nearly 24 hours and it was tiny, not that it

matters at all. I have read that Lyme usually occurs after a tick has been

attached for 36 hours or longer but if I have Lyme, that certainly wasn't

the case for me.

Wow, Biaxin. I hope I don't need to take it, it makes me REALLY sick. I'm

on Doxy now but I'm concerned it's not a strong enough dose. Would you mind

sharing the name of your LLMD? My ND is from Seattle and perhaps he knows

him or knows of him. So far I haven't found any LLMD's in my area so I may

need to travel or perhaps my ND can consult with an LLMD as to proper

testing and treatment.

If you don't mind me asking, what are your symptoms and what is the pattern?

Again, thank you for your kind help. I appreciate it so much.

Kenda

> 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

Report post · September 13, 2008

I don't know where people get this info that a tick must be attached for

36 hours before it transmits diseases. That seems like misinformation to

me. Mosquitos are attached for a few seconds and people get all kinds of

diseases from them. West Nile, Malaria, Dengue Fever and many more. Dogs

get Heartworms from Mosquitos too.

cathleen

Kenda Skaggs wrote:

>

> Hi, Maureen,

>

> My tick was attached for nearly 24 hours and it was tiny, not that it

> matters at all. I have read that Lyme usually occurs after a tick has been

> attached for 36 hours or longer but if I have Lyme, that certainly wasn't

> the case for me.

>

> Wow, Biaxin. I hope I don't need to take it, it makes me REALLY sick. I'm

> on Doxy now but I'm concerned it's not a strong enough dose. Would you

> mind

> sharing the name of your LLMD? My ND is from Seattle and perhaps he knows

> him or knows of him. So far I haven't found any LLMD's in my area so I may

> need to travel or perhaps my ND can consult with an LLMD as to proper

> testing and treatment.

>

> If you don't mind me asking, what are your symptoms and what is the

> pattern?

>

> Again, thank you for your kind help. I appreciate it so much.

>

> Kenda

>

Report post · September 13, 2008

Hi, ,

Thank you! Is the dose weight dependent at all? I only weigh 95 pounds

Kenda

> Kenda,

>

> The recommended dosage of doxycycline is 200 mg twice per day.

>

> On Fri, Sep 12, 2008 at 3:27 PM, Kenda Skaggs <oliverblue@...> wrote:

>

>> 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

>>

Report post · September 14, 2008

I weigh 110, sometimes less, and I still take the same dosage as others much

heavier.

Report post · September 14, 2008

Adult dosages are generally for individuals 100 pounds and over. So

technically at 95 pounds, your dosage should be slightly less than

Doxycycline 200 mg twice per day. However, it is hard to break the

capsule/tablet into the correct fraction! If it were me, I would just take

the regular dosage since it is close enough. Your doctor would have to tell

you if he/she wants you to do it differently.

Good luck!

On Sat, Sep 13, 2008 at 11:26 PM, Kenda Skaggs <oliverblue@...> wrote:

> Hi, ,

>

> Thank you! Is the dose weight dependent at all? I only weigh 95 pounds

>

> Kenda

>

Report post · September 14, 2008

Thank you very much. I see my ND on Tuesday so I'll discuss this with him.

He's not lyme literate and there doesn't appear to be a LLMD in my area. He

and I are both getting a huge education! Had I been treated at a higher

level initially perhaps I wouldn't be sick now. It's all so frustrating.

While researching, I found an interesting site. http://cassia.org/ If you

haven't seen it yet, it's a man's natural approach to treating Lyme. Does

doesn't advocate not using antibiotics but didn't want to live on

antibiotics long term.

Kenda

> Adult dosages are generally for individuals 100 pounds and over. So

> technically at 95 pounds, your dosage should be slightly less than

> Doxycycline 200 mg twice per day. However, it is hard to break the

> capsule/tablet into the correct fraction! If it were me, I would just take

> the regular dosage since it is close enough. Your doctor would have to tell

> you if he/she wants you to do it differently.

>

> Good luck!

>

> On Sat, Sep 13, 2008 at 11:26 PM, Kenda Skaggs <oliverblue@...> wrote:

>

>> Hi, ,

>>

>> Thank you! Is the dose weight dependent at all? I only weigh 95 pounds

>>

>> Kenda

>>

Report post · September 14, 2008

Thanks, . It sounds like my dosage isn't nearly high enough.

Kenda

> I weigh 110, sometimes less, and I still take the same dosage as others much

> heavier.

>

Report post · September 14, 2008

>

> I don't know where people get this info that a tick must be

>attached for 36 hours before it transmits diseases. That seems like

>misinformation to me. Mosquitos are attached for a few seconds and

>people get all kinds of diseases from them.

>snip<

>cathleen

Cathleen,

The lyme spirochete resides in the carrier tick's midgut, and it

takes approximately 36 hours after attachment for the spirochete to

move to the tick's salivary gland. It is when the spirochete in the

tick's gut senses the supply of blood confirming there is a host

(victim) available, that it instinctively begins its journey to the

salivary gland in order to move from the tick to the host. There is

some disagreement about the time span, but most researchers believe

the process takes about 24-36 hours.

Others believe there are cases where the spirochete can already be

present in the tick's salivary gland, so in those cases, of course,

transmission can be very soon after the bite.

If you will just Google for lyme + tick + " 36 hours " you will

get more results than you have time to read (11,000!)

Here are excerpts and URLs from just a few:

" Unlike mosquitoes, the process by which ixodid ticks feed is slow,

lasting a few days. "

http://www.cirrusimage.com/Arachnid_deer_tick.htm

Good video by Dr. Bob Arnot:

http://www.5min.com/Video/Minute-Clinic---Deer-Ticks-21798495

" While it is true that it takes the spirochete some time to travel to

the salivary glands from the tick's midgut where it resides, at the

Lyme Conference, Willy Burgdorfer described a study in which they

found 5 to 10 percent of ticks already have the spirochete in their

salivary glands. That means they transmit the disease as soon as

they bite. "

http://www.lymesite.com/how_long_must_a_tick_that_is_inf.htm

I hope this helps.

Dottie

Report post · September 15, 2008

that confirms my thoughts exactly. you can't say with certainty, that

you won't get Lyme unless the tick is attached for a " certain amount of

time " . you are not safe if a tick has bitten you at all.

cathleen

Dorothy wrote:

>

> >

> > I don't know where people get this info that a tick must be

> >attached for 36 hours before it transmits diseases. That seems like

> >misinformation to me. Mosquitos are attached for a few seconds and

> >people get all kinds of diseases from them.

> >snip<

> >cathleen

>

> Cathleen,

>

> The lyme spirochete resides in the carrier tick's midgut, and it

> takes approximately 36 hours after attachment for the spirochete to

> move to the tick's salivary gland. It is when the spirochete in the

> tick's gut senses the supply of blood confirming there is a host

> (victim) available, that it instinctively begins its journey to the

> salivary gland in order to move from the tick to the host. There is

> some disagreement about the time span, but most researchers believe

> the process takes about 24-36 hours.

>

> Others believe there are cases where the spirochete can already be

> present in the tick's salivary gland, so in those cases, of course,

> transmission can be very soon after the bite.

>

> If you will just Google for lyme + tick + " 36 hours " you will

> get more results than you have time to read (11,000!)

>

> Here are excerpts and URLs from just a few:

>

> " Unlike mosquitoes, the process by which ixodid ticks feed is slow,

> lasting a few days. "

> http://www.cirrusimage.com/Arachnid_deer_tick.htm

> <http://www.cirrusimage.com/Arachnid_deer_tick.htm>

>

> Good video by Dr. Bob Arnot:

> http://www.5min.com/Video/Minute-Clinic---Deer-Ticks-21798495

> <http://www.5min.com/Video/Minute-Clinic---Deer-Ticks-21798495>

>

> " While it is true that it takes the spirochete some time to travel to

> the salivary glands from the tick's midgut where it resides, at the

> Lyme Conference, Willy Burgdorfer described a study in which they

> found 5 to 10 percent of ticks already have the spirochete in their

> salivary glands. That means they transmit the disease as soon as

> they bite. "

> http://www.lymesite.com/how_long_must_a_tick_that_is_inf.htm

> <http://www.lymesite.com/how_long_must_a_tick_that_is_inf.htm>

>

> I hope this helps.

>

> Dottie

>

Report post · September 16, 2008

Regarding how long a tick must be attached to transmit disease:

In my own personal experience - I have been infected with Lyme from a Lone Star

tick that I am sure was attached approx. 12 hours. Many bites later, and after

apparently being cured of that initial Lyme, I acquired Lyme again from another

Lone Star tick that was probably only attched for 4 hours. 2 years later, I

acquired Babesia (and maybe more Lyme, Bartonella, and Ehrlichia) from a tick

that was embedded for 12 hours AT MOST. Then 6 months later I definitely got

Bartonella (and probably more Lyme...) from another Lone Star tick that was

attached for less than 12 hours. I am sure of the times because I know what I

was doing when I picked up the ticks and know when I removed them.

My husband also acquired Lyme, Babesia and Ehrlichia 2 years ago from a Lone

Star tick bite that was probably attached for 8-12 hours. He now has Lyme,

Babesia and Bartonella from any of numerous tick bites he's had - but they have

never been on for extended periods of time, because we are diligent in checking

for them whenever we've been outside. Our woods here in Middle Georgia are full

of them, so we have stopped going into our woods. However lots of wildlife bring

them into the yard, too, evidently.

Report post · September 28, 2008

Hi Judy,

I am in RI too! Who is your PM doc? I'm looking for a new one myself. Hoping I

won't need much from pne now that I've had my hardware out and am doing so much

better! I do have arthritis now and have found it to be worse since my last

surgery. This rain we've had for days is killing me. I have barely cooked or

cleaned since it started a few days ago. I feel so lazy and tired. I hate that

my life is commanded by my back. ---

New Member

Hi, My name is Judy, I'm a new member and have been reading all the posts. I

have sympathy for what all of you are going through with chronic back and neck

pain. Although my problems are not as serious of some of yours, I do suffer from

arthritis of the thoracic and lumbar spine as well as hips and sacroiliac

joints. I have an excellent pain management Dr who treats me with cortisone

shots when I need them and prescribes Baclofen and the Flector patch for bad

times. I also take Tramadol when needed but try to rely mostly on Tylenol.

Walking really helps me and I'm looking into some water aerobics for the winter

months.

I really appreciate all the information I'm getting from this group. thank

you so much for sharing your knowledge and honesty with us. I saw my PM Dr

yesterday and asked if he had fellowship training in pain management which he

does and is board certified but, I never would have known to ask that question

without your suggestion.

Judy (53) Rhode Island

Report post · September 29, 2008

,

I know what you mean about the rain and arthritis, I have suffered a very long

time with OA, even before I was diganosed with it. I had a CT once in an ER and

the reader came to me personally to tell me she just wanted to see if I was

really the age I stated, because my spine looked like it belonged to a 68 year

old instead of 48.

Rain and bad weather even down in the southern states is a killer when you have

OA or arthritis, what ever the case may be.