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» LymeNet Flash » Questions and Discussion » Medical Questions » Just diagnosed - should I be worried?

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Author Topic: Just diagnosed - should I be worried?
jbass
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I was just diagnosed with Lyme Disease yesterday. The rash was about 6" in diameter and I had only had it a couple of days (I think) so I (and the doctor) assumed we had caught it early. Other than the rash, I was asymptomatic. The doc started me on a 21-day course of doxycycline, 100 mg, twice a day. He (and the literature) seems to indicate that this treatment will "probably" knock out the bacteria and prevent any future chronic symptoms.

I would appreciate the expertise of this discussion group to help me determine (1)should I be concerned, (2)is the prescribed treatment adequate, or should I be doing something different, (3)what is the likelihood of having chronic problems after treatment, (4)if I do have chronic problems, what kind of doctor or treatment should I try.

Thanks ahead of time for your help. As you can imagine, I am a bit nervous about this whole thing.

[confused]

Posts: 5 | From NC | Registered: Jun 2006  |  IP: Logged | Report this post to a Moderator
dontlikeliver
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Hello,

Glad you appear to have caught this early.

Go to www.ilads.org and in the Articles and Presentations section and download/read Dr. Burrascano's diagnostic and treatment guidelines.

Personally, I would extend the antibiotic treatment by a couple of weeks and double the dose, but I am not a doctor and you should not take that as medical advice. It is only what I would do to PREVENT chronic problems.

Best wishes,
DLL

Posts: 2824 | From The Back of Beyond | Registered: Oct 2003  |  IP: Logged | Report this post to a Moderator
mojo
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Here is a link to Dr. Burrascano's info:

http://www.ilads.org/files/burrascano_0905.pdf

I think a bigger dose (200mg 2 x per day min) and longer period of time is needed.

Maybe you can take this info to your Dr. Unlesss they know a lot about Lyme most dr.s don't know how to treat it.

Glad you caught it early!

Posts: 1761 | From USA | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
SForsgren
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Sounds like your doctor is not knowledgeable on Lyme disease and may be undertreating you which could lead to a lifetime of problems.

--------------------
Be well,
Scott

Posts: 4617 | From San Jose, CA | Registered: Jul 2005  |  IP: Logged | Report this post to a Moderator
mlkeen
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Yes, you should be worried. My son had a month of doxy after a bulls-eye rash. He seemed better, but his health declined 6 months later during 7th grade.

Today is his last day of 11th and he is still being treated. He missed most of 9th grade and had to be homeschooled for 10th. He is very close to being well, we think.

There are other infections, 6-8 that are carried by ticks. One bite can give you several diseases, maybe needing differnt treatments.

I'm worried for you.

Opps! sorry, I forgot to say welcome! We are all in the same boat.

Mel

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fatigued15
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I would make an appointment with a lyme literate doctor. (llmd)
Posts: 488 | From NY | Registered: Oct 2004  |  IP: Logged | Report this post to a Moderator
Trina
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Hello,
I am new to lyme disease to.I got it around may 2 and did not get antibiotics untill around may19.

After going to many web sites and reading a couple of lyme disease books and seeing on this board what some of these people have to live with daily you better do all you can to see a lyme literate doctor.

Some tics carry two or three diffrent diseases and it takes more than one antibiotic to kill them.The center for diseae control is not sure a month is even long enough on antibiotics.And if it is Doxy it has to be at a *high enough leval to kill the spirokeets.*

Listen to these people, they know what this disease does, they live with it every day of their life.

The little Buggers can go to your brain,kidney,heart ect and pop out a couple of years later and oops.... the doc things you have lupus, maybe MS lets see here it looks like you have some white lesions on your brain...
lyme disease imitates many difftent diseases and you get the symptoms.

My sister is a PA , she prescribed the standard three weeks,I started telling her about all the problems people have and some have to be on antibiotics for years,some have major health problems.She said she looked it up in her medical book and gave me the standard dosage.

Well, she must have started doing reserch becuse she called yeserday and upped it to four more weeks.I only hope the dosage is high enough.

Welcome,
I do not want to scare you off, just want to make sure you get plenty of the right medicine by the right doctor and he knows what he is doing.You don't want to be a lymie for the rest of your life !

--------------------
Trina

Posts: 64 | From Mo. | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
bettyg
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Welcome Bass to this board. GLAD you found a GOOD, factual lyme web site PROMPTLY. That makes all the difference in the world.

Yes, your treatment needs to be extended to make the spirochetes are KILLED OFF in your body.

YOU HAVE THE OPPORTUNITY TO BE "CURED" SINCE IT WAS JUST FOUND VS. MANY, LIKE ME, MISDIAGNOSED FOR DECADES. Take every advantage of this; you are only give ONE chance to be cured.

Some others have been able to get into remission, but majority don't have this chance.

Am I trying to scare you? YOU BETCHA. I wish I was in your shoes and could be CURED EARLY from this fatal disease.

I'll copy/paste my newbie links for you here. Good luck and keep us posted.

Since you are in NC, see SUPPORT GROUPS listed on left side, USA, NC, and it should show NC groups. There are phone nos. & email to make contact with folks.

OTHERWISE, go to SEEKING DR. SECTION: Post what city/STATE you re looking for a LLMD, lyme literate MD, in. People will PM you, personal message.


Welcome to this 24/7 LYME support group board!

Here's TREEPATROL's and Tincup's combination newbie links.

http://flash.lymenet.org/ubb/Forum1/HTML/029917.html

Print off the links then check them off as you read as you could spend several months reading all of this.

print & read Dr. Burrascono's 2005 info first; you will come back to this often.

Extensive info in Treepatrol''s newbie links about the meaning of WESTERN BLOT IGM/IGG test results from Igenex! Be sure to read or print this info IF Igenex tested you ok!


Also, see Cheryl''s extensive web sites on: LD DIAGNOSIS, SYMPTOMS, & TREATMENT ... wonderful! Read the area on CO-INFECTIONS! You could have from 1-10 other illnesses that tick is carrying...lyme, malaria, etc.

http://www.lymeinfo.net/lymediseasetreatment.html

If you are showing symptoms of co-infections, I would like to suggest being tested for co-infections when you have LYME western blots done. It isn''t cheap!! But if you are positive, you can treat the co-infections first, and then work on LYME symptoms.


EYE SENSITIVIES & NOIR, no infrared sunglasses info., 2-28-06 updated YES, I have what you have! Are you on doxy too? That made my extreme eyes

200% MORE sensitive than they we were earlier.
I learned a lot about eye sensitivity/lighting on
www.marshallprotocol.com board.

Look for AUSSIE BARB'S EAST FINDER and then eyes/sunglasses, etc. Wealth of info there.

I ordered the NOIR sunglasses.
http://www.noir-medical.com/noir_amber.htm
You will need 2% amber and 10% amber ... Style no. 901 and 910.
1-800-521-9746 TOLL- FREE

mention you have lyme and marshall protocol, they will give you 20% off!
I'm NOT on MProtocol, but mention it anyway. I was on their new board almost 12 months!

Also they have been kind enough to replace the SCRATCHED LENSES & BROKEN BOWS! How's that for service?

I don't drive often at night, but I can wear NOIR's 901 lenses at night while driving; it creates soft candle lights coming at me...tolerable. NOT to wear in town with all the action of people crossing where they shouldn't be, etc.

from LOU to Betty on LONG web links and Thank You Lou!:
"If you hit the return key in the middle of a link, I don't think it will be clickable anymore. An alternative that maybe Betty should be telling people about is the tiny url website. I have it on my tool bar at the top of the page and use it for
those incredablylongwebsiteaddresses.

All you have to do is ask tiny url to produce a short version, which it will do with a unique address, which you then use instead in your post. Works just the same when clicked! Here is the website, spread the word!
http://tinyurl.com/

3-1-06, fyi, I tried dragging tinyurl to my toolbar without success, so that''s why I currently have LONG addresses vs. short tiny ones! I''ll keep trying.

UNDERSTANDING HERXING REACTIONS
http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=041517

RASH ITCHES -- use ``rubbing alcohol`` on it especially the corners good. Hubby suggested; worked great for me; rash cleared up in 2 days vs. weeks/month

Tincup''s explaination of Camp A and B, Steere vs. Burrascano, on short term antibiotics vs. long-term CHRONIC abx.
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=021395

Lymetoo/TUTU's links: yeast & candida:
Candida diet and elimination:http://flash.lymenet.org/ubb/Forum1/HTML/021412.html
http://www.wholeapproach.com/diet/
Lyme symptoms list compared with yeast symptoms
http://flash.lymenet.org/ubb/Forum1/HTML/021412.html

Tincup posted March 8, 2005, 2218

Lyme Disease Survey Responses

February 27, 2005 - March 9, 2005

1. How many doctors did you have to see before being properly diagnosed? 112 responses
Average number of doctors consulted before being diagnosed - 14
Answers ranged from 1- 120 different doctors

2. Have you had problems getting insurance to pay for doctors or treatment?
87 responses? Yes- 63 No- 24

3. Have you lost income because of Lyme disease? 106 responses
Yes- 99 No- 7

4. How much does it cost you (average) per month for Lyme related expenses? 61 responded
Average cost per month per patient- $4,472.49
Low- $500.00 High- $21,492.00

5. How many different medications do you take per day? 77 responded
Average - 14 different medications per day
Low- 3 High- 25

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ChrisBtheLymie
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200mg of Doxy will probably stop the bacteria from growing or reproducing, but it will not kill it. I suggest you print off Dr. B's guidelines and show your doctor, if he does not agree find a LLMD.
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seibertneurolyme
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Welcome to LymeNet! Sorry you are sick, but you have come to the right place to get answers. Many helpful friendly people here. Ask all the questions you need to.

Here is a link to a previous post that shares the stories of many people who were undertreated and have been sick for many years as a result.

As others have told you, the risk of a coinfection is very high and each different infection (Lyme, babesia, bartonella, anaplasmosis etc) requires a different antibiotic protocol. Some of the coinfections are actually more serious than Lyme disease.

Only a LLMD (Lyme Literate Medical Doctor) will know the symptoms of all the possible coinfections well enough to guide your treatment.

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=033426

Good luck and keep us posted.

Bea Seibert

Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004  |  IP: Logged | Report this post to a Moderator
5dana8
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Yes. You should be worried. Your doctor doesn't know how to treat lyme. He is not lyme literate.

And he is under treating you. Low dose and NOT long enough.Which leads to Chronic lyme.

Alot of us on lymenet have chronic lyme and this disease can ruin your life.

Please research and find a doctor who is lyme literate.

Good links are provided on this thread. Do yourself a favor and read them and get proper treatment and go on to have a wonderful life.

I wish I did.

--------------------
5dana8

Posts: 4432 | From some where over the rainbow | Registered: Sep 2005  |  IP: Logged | Report this post to a Moderator
TheCrimeOfLyme
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(1)should I be concerned
Yes and No. NO, because you were diagnosed early. Yes, because it MAY not be adequate treatment.

(2)is the prescribed treatment adequate, or should I be doing something different

if I were you, which Im not, I'd see a LLMD as doing something different.

(3)what is the likelihood of having chronic problems after treatment
If it's inadequate treatment, very high.

(4)if I do have chronic problems, what kind of doctor or treatment should I try.

A LLMD. Where are you located? You can PM me and I will help try to direct you to a doctor.

--------------------
You want your life back? Take it.

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groovy2
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hi jbass

I second what the others have said--
More ABX --Longer--

Check for coinfections -Very Important--

You have a chance to Not be Us --
so use your chance wisely --Jay-

Posts: 2999 | From Austin tx USA | Registered: Oct 2004  |  IP: Logged | Report this post to a Moderator
hatsnscarfs
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Yes you should be worried. Fortunately you have found the right place to get lots of information and support.

I started treatment 3 1/2 weeks after the bite. My Dr. told me Lyme was easily treatable. I took 200mgs/day doxycycline for 1 month and then stopped thinking I was cured.

Within a day all my symptoms came back worse than before. It took me 3 more months to get to a LLMD. By then I was a total mess, in extreme pain, brain not working, couldn't work...

Once I found a LLMD who gave me adequate dosages I started to get better. I'm on my 22 month of antibiotics and am making progress.

So, work on getting some more doxycycline and don't stop taking it until you have seen a LLMD.
Post in Seeking a Doctor to find some names and start trying to get an appointment ASAP. There are long wait times. Don't wait to find out how you feel in a month.
hatsnscarfs

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Andie333
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As others have said, I'm really glad you've found your way to this board and to the information here. I only wish I'd known about it when I first had the bullseye rash.

I went to a very highly regarded infectious disease doc. He put me on 200 mg of an antibiotic for 14 days. The rash disappeared, I felt fine, and I just assumed that was it. I went on with my life and didn't think about Lyme again.

That was in 1996. I started having weird medical problems about three years after that. Usually, the docs dismissed what was going on as the flu. Sometimes it was more specific. What I didn't realize was that for years and years, those Lyme bacteria were multiplying and moving into my body and very comfortably into my brain.

I was finally tested positive for Lyme in June and have been on antibiotics for the past year. I've improved a LOT since then, but I'm still far far far from being normal...

The really good news is that you still have the chance to beat this horrible disease back and claim your life. As others have said, that's a chance many of us here no longer have.

I wanted to add to this thread, because if nothing changes in your treatment, you'll probably feel okay and think you're over Lyme. Please don't let that happen; I'd hate to see you lose the two or three years I can't get back.

Find a Lyme literate doctor in your area. You can do that by posting a request for suggestions on Lymenet. You can also use the link in the menu on the left. Click on Support GRoups, find a group in your area and contact them for recommendations.

It's really NOT enough that a doc says he or she knows about Lyme or is reputable in their respective geographic area or medical field. There are doctors in the country who see people like you on a daily basis and have also seen people like me...people who had much too little treatment for too short a time.

I'm so glad you were able to find this board; keep us posted.

Andie

Posts: 2549 | From never never land | Registered: May 2005  |  IP: Logged | Report this post to a Moderator
hardynaka
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I took 100mg doxy for 14 days, was also asymptomatic (only the rash), thought I knocked the bacteria out.

3 months later, my other symptoms first appeared. Since then, hell started.

Now I'm almost 1 year sick (more a few days to complete the year). If you had the rash, you have lyme 100% sure.

Posts: 1086 | From Switzerland | Registered: Oct 2005  |  IP: Logged | Report this post to a Moderator
   

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