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» LymeNet Flash » Questions and Discussion » Medical Questions » Husband just diagnosed and scared.

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Author Topic: Husband just diagnosed and scared.
Jamielee
Junior Member
Member # 16228

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Hi, I am new to this board.

My husband was just diagnosed with Lyme disease yesterday.

He had the bullseye rash last week and has had headaches, joint

pain, numbness in his arms and flu like symptoms for about a

week which is why we went to the doctors. He did have a deer

tick on his head about a month ago, so the doctor said this is in

the early stage. The doctor has him on 875 mg of amoxicillin

twice a day and also 500 mg of Naproxin twice a day for pain for

two weeks. Is this enough time and treatment?

The doctor acted like this was no big deal and will be gone in

two weeks but after reading these message boards, we are pretty

scared.

Thank you in advance for your help.

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Keebler
Honored Contributor (25K+ posts)
Member # 12673

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-

My MO is usually to dump some key information and then I'm too tired to soothe the fears. I assure you that everyone reading this sends a few hugs. So, you have the power of those who have been studying this for a while to help your husband not become one of us.

--

This will take some work and it's rather scary, to say the least. However, if both of you take the best care of yourselves as you can now - and learn more - and find a good doctor - that's your best chance. You have identified this much earlier than most patients.

Most here went months or years - even decades - before treatment. Some still have not gotten treatment.


He is very lucky to have the rash. That means that lyme tests are not needed. However, did he have tests for the lyme co-infections such as babesia, ehrlichia, bartonella, etc ?

If your husband might be missing his spleen, he should be checked for BABESIA - ASAP - as that can be fatal in those who have had their spleens removed. It requires a different treatment than does lyme.

more about tests at www.igenex.com IGENEX


EARLY treatment is the best ticket you can have. The fact that the tick attachment was a month ago and the rash now does seem to indicate that - unless from a fresh bite - lyme has had time to disseminate and longer treatment is likely a better chance for resolution.


Two weeks' treatment, though, is NEVER long enough, even for fresh bite. And, a single abx against the infection is not enough.


Many people do very well and get better with early, but aggressive and THOROUGH treatment. Even at this stage, you husband has a better chance. However - I would be sure your doctor has fully considered all the stuff in the articles I'll post.

Check with your local lyme support group - or at the "seeking doctors" forum here if you need to find a LLMD (that will be explained below).

And that means that co-infections should be assessed and treated, if there.

It means that mono-therapy would be replaced with combination treatment to cover various stages and forms of the lyme.


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

Two weeks' treatment is NOT ENOUGH TIME. Sorry, but there are many studies to back that up.

I hope the Naproxin does okay with his stomach. I took that a long time ago and it really ripped up my stomach. With abx (antibiotics), the naproxin might harder on the stomach.

Also, to help the lining of the stomach, probiotics and anti-fungal measures should be employed. Any abx can create systemic yeast. You want to prevent that. (I use Olive Leaf Extract for that, too).


And, I hope someone comes along who knows how Naproxin may affect the lyme - if at all - I know it's not an abx, but we have to be careful about interactions, etc. Lyme is very unique in its behavior.

The pain will lessen when the infection is treated and the liver is not so loaded with toxins. Lyme is a very toxic infection and it can affect the liver greatly.


======================================

PHOTOS

If your husband still has the rash take several photos of it and set them aside in case you need them in the future. This may be the most important insurance for future treatment.


=======================================

CO-INFECTIONS

Testing for co-infections is vital. And liver support, such as milk thistle, can be very valuable for many reasons.


I'll post a few articles and links in a little while and other will have more for you. Sorry you are here, but I hope you find the answers to help.

=======================================
=======================================

See the NEWBIE thread at the top of medical.


=======================================

ILADS

www.ilads.org

You can download the ILADS TREATMENT GUIDELINES

see the articles and presentations.

(you can also google the IDSA and find their treatment guidelines. Most likely this is what your doctor is following.

Be sure to see the Savely article - and the CT. ATTY. GEN. Press Release concerning those.

--

more about tests at www.igenex.com IGENEX

=======================================


www.lymediseaseassociation.org

LYME DISEASE ASSOCIATION

======================================


www.lymenet.org/SupportGroups/UnitedStates/

Lyme Disease Support Groups - U.S.


=======================================

see the Medical Abstracts here, at LymeNet - menu up and to the left of this page.

======================================

The new Documentary, "Under Our Skin" would be excellent to see.

I do not have the link, sorry. someone else will.

======================================


Check out Amazon (there is a link to the left of this page).

Search for the book: The Lyme Disease Solution, Singleton

This may be the best source for you at this time.


=======================================

Sorry to have loaded so much here. Information can save and improve the quality of lives. Knowledge is power.

Best of luck to you both.


-

[ 07. July 2008, 10:27 PM: Message edited by: Keebler ]

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

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-


Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed here do to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.


http://tinyurl.com/2dmvs2

From the May 2007 issue of Clinical Advisor (home page: www.clinicaladvisor.com )

CONTROVERSY CONTINUES TO FUEL THE "LYME WAR"
By Virginia Savely, RN, FNP-C

*****

As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.

Excerpts:


" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . ."


`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.


"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."

. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.


- FULL ARTICLE AT LINK ABOVE.

=======================================
=======================================


http://www.ct.gov/ag/cwp/view.asp?a=2795&q=414284

Connecticut Attorney General's Office

Press Release

Attorney General's Investigation Reveals Flawed Lyme Disease Guideline Process, IDSA Agrees To Reassess Guidelines, Install Independent Arbiter

May 1, 2008

Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.


- cont'd at link.

Printable version: www.ct.gov/ag/cwp/view.asp?a=2795&q=414284&pp=12&n=1


-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
ByronSBell 2007
Unregistered


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even though you caught it very early, go see a lyme specialist in your area to start treatment, you don't want the disease to relapse or go undertreated!
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Keebler
Honored Contributor (25K+ posts)
Member # 12673

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-

Honest, this is not intended to be dramatic or to scare you. This is what you want to PREVENT. With the right care, the chances are so much better.

-

This excellent article explains a lot about what chronic lyme (neuroborreliosis) can do.

It also details other chronic stealth infections that should also be assessed in all chronic patients, especially those with neurological symptoms.


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


http://tinyurl.com/preview.php?num=64y3rv

(then clink "PROCEED TO THIS SITE")


May 2008 Volume 39 Number 5 LABMEDICINE
www.labmedicine.com - American Society for Clinical Pathology

CHRONIC BACTERIAL AND VIRAL INFECTIONS IN NEURODEGENERATIVE AND NEUROBAHAVIORAL DISEASES

- by Garth Nicolson, Ph.D.

This author's site is:

The Institute for Molecular Medicine

A nonprofit institute dedicated to discovering new diagnostic and therapeutic solutions for chronic mycoplasma infections.

www.immed.org

He has some specific labs for testing - and more information.

Some of this overlaps with tick-borne infections.


-

[ 08. July 2008, 01:17 AM: Message edited by: Keebler ]

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
hcconn22
LymeNet Contributor
Member # 5263

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It's only a big deal if you dont get better or relapse as most of us have.

Doxy is a better treatment for early Lyme.

Also I would see if I could get 2-3 months of doxy.

If not I would spend the money and go see a LLMD.

Also get tested to co-infections.

--------------------
Positive 10 bands WB IGG & IGM
+ Babesia + Bartonolla and NOW RMSF 3/5/09 all at Quest

And still positive ELISA and WB two years after IV treatment
http://www.lymefriends.org/profile/blake

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bettyg
Unregistered


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welcome; glad you found us.


YOUR HUSBAND CAN BE ONE OF THE LUCKY ONES ON GETTING TREATED EARLY WITH APPROPRIATE MEDS AND LONG ENOUGH!!! we recommend 2-3 months of antibiotics, and 2 months with NO SYMPTOMS BEFORE GOING OFF THEM!


WELCOME, would you like a FREE copy of my newbie package of 124 pages info galore sent by LYMENET'S PRIVATE MESSAGE system here; includes TREEPATROL'S LINK of his archive of over 1000 links of good lyme info?


I've been completely REORGANIZING it; NOT DONE YET; but up to page 60 since I have now created a TABLE OF CONTENTS WITHOUT PAGE NUMBERS since it changes DAILY! The part NOT organized yet is the last 30 pages of SSDI, ss disability insurance benefits tips/forms!


also, please go to TREEPATROL'S NEWBIE INFO IN MEDICAL; at top being features; mark it as a favorite! over 1000 links of good lyme info. He/I have some duplicates.


most of mine is very DETAILED info on certain things: SSDI/ss diability insurance benefits; FINANCIAL BURDENS; about IGENEX blood testing, symptoms lists for the basic types, NOIR/no infrared SUNGLASSES, etc. and how to use this board!


If you would like my newbie package, please send me a PRIVATE MESSAGE. PMs are the 2 people standing together icon to right of your name. Just ask me to send you lyme package, and I'll get it to you promptly. Thank you!
******************************

we recommend 6-12 WEEKS of doxycycline antibiotics; 2 months symptom FREE before stopping antibiotics.


400 mg daily; 200 mg am/pm each 12 hrs. apart!
***********************************************


so glad you found dr. burrascano's 05 lyme guidelines!


call your dr. and DEMAND MORE! you are now in the LYME WAR CONTROVERSY ... another thing you didn't ask for!


please see BELOW LINK about ACTION ALERTS....CALLING 4 WASH. DC PHONE NOS. GIVING THEM YOUR FULL NAME/COMPLETE MAILING ADDRESS AND TO "PUT LYME DISEASE ON THEIR AGENDA!"!!!!

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=8;t=001271

******************************************

short/sweet version is this:


IDSA, infectious disease society of america, are infectious drs. who:

.. do NOT believe in CHRONIC LYME;

.. treat from 1 day to 3 weeks MAX ANTITIOBICS, AND YOU ARE "CURED"! HOG WASH!!


ILADS, intl lyme associated disease society, are our LLMDS, LYME LITERATE MDS, and they:


... believe in chronic lyme AND TREAT US AS LONG AS NECESSARY!!!


... another controversy; various STATE HEALTH DEPTS. FILING CHARGES on our llmds for treating antibiotics longer than 4 weeks!!!


example: see activism; read about DR. CHARLES RAY JONES, KIDS NO. 1 LLMD IN CONN! starting his 3rd year of charges trying to take away his license!!!

*********************

Also, if you are needing a LLMD, LYME LITERATE MD, please post on board in SEEKING DR. forum. Go to FORUM HOME, right corner click, and then chose seeking dr.


We ask that ALL members post in seeking dr. and START THEIR OWN ``NEW'' POSTS vs. adding on to someone else's because we can NOT keep track of who has been answered and who NEEDS to be replied to ok!

Many of you have been sending me a private message asking for llmd names and have NOT posted on the board. I require you to post online because when you show the state and largest cities nearest you; others from YOUR STATE WILL JUMP IN and give you the MOST CURRENT info that they have.


We have nationwide lists do NOT have most current info! We do what we can, but we depend on members to share all updates, deletions, phone nos. not working or changed, etc. with us. Then we let the others know promptly who have lists!

So thank you for starting YOUR OWN POST in seeking dr! We/I will help you as much as possible over there!  Betty
*******************************************

When you post or reply, please break up your solid, continuous block text [Smile]


welcome to the board! many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.


please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.


now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``THREE`` after each paragraph; we need that space for comprehension.


if you are NOT a wordy person, you can do 2 or 3 total ok. do this for your entire post.

NOTE: you do NOT have to use "", just show the name of person you are responding to, and then type your comment.


IF you need to use "", PLEASE DELETE "BOLD" CODES so it's regular type text we read vs. the DARK, HARSH/PAINFUL BOLDING.


specifically, delete the first 4 characters of 2ND LINE of a ""


[QB] just delete these 4 characters, and BOLDING is GONE! my eyes will really appreciate that; it's one very bad side effect of my having lyme for 38.5 years!! xox


then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND


we thank you for helping us; [Wink] otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. I'm also in the early stages of losing my eyesight from diabetes retinopathy. [Frown]
*******************

please go to dr. burrascano's 05 lyme treatment guidelines and print out pages 17-18 ,,, where it talks about dosages for KIDS and adults!!

http://www.ilads.org/burrascano_0905.html

p.17: Antibiotic Choices & Doses From CBB:
Amoxicillin-Children: 50 mg/kg/day divided into q8h doses.
My pharmacist did the math for me, & it means:
35 lb child - 800 mg per day
70 lb child - 1,600 mg per day
[1 kg=2.2046 lbs]

p.19: Treatment Categories
Early Localized - single erythema migrans rash with no constitutional symptoms.
Children: oral therapy for 6+ weeks.

According to Dr B's recommendation, your son did not have an adequate amt per day or long enough treatment to eliminate the bacteria.
Take a copy to your Dr and see if (s)he will treat according to these Guidelines. Do whatever it takes - beg, plead, throw yourself on the floor and cry if necessary.
*************************************************

Please go to SUPPORT GROUPS, left-hand side column by state.
CALL the nearest group leader for advise.
Do NOT email; many are too sick to reply; thanks!


People seeking doctors in certain states might be able to
get help from their state online information and support group. Over 1500
people belong to these state groups. Many of the groups are small
but quite a few have 20 or more people on them.

To find your state group, go to
http://health.groups.yahoo.com/group/statenamelyme

Type your state name and lyme as one word, e.g. newyorklyme

For SC, SD, ND and WY, put a hyphen between the statename
and lyme, e.g. northdakota-lyme

The groups are moderated so you have to apply, and we don't
allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately.
***************

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Jamielee
Junior Member
Member # 16228

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I can not thank all of you enough for all the information you have

provided. I have set up another appointment this morning for him

and am ready to go in and beg or cry for more antibiotics....I am

hoping our doctor will listen to all of the information and give us

at least 4 more weeks of antibiotics and take more blood

to test for other co-infections. THANK YOU AGAIN.

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WillBDone
Member
Member # 14269

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I would just caution you to time the coinfection testing well. My understanding is that for some coinfections, testing is needed while OFF antibiotics.

In my case, when I went to my LLMD I was already on Doxy to treat Lyme. He couldn't test for some coinfections because I was already on antibiotics.

I have been off meds now for 3 weeks...So far, so good! Even though your husband may be feeling really awful, I want to offer up the hope of MUCH improvement as PROPER treatment progresses.

--------------------
"You play the hand you're dealt. I think the game's worthwhile."

C. S. Lewis

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Keebler
Honored Contributor (25K+ posts)
Member # 12673

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-

www.igenex.com IGENEX' site has details on testing. Call them if you have questions.

I hope you don't have to beg and cry for more medicine.

It is not supposed to be our place to figure all this out and then beg for the doctor to do what we ask. Unfortunately, though, it has come to that. I hope your doctor has all the knowledge and skill required for the best treatment possible.

If not, I hope you can find another doctor. There is too much to learn for us to be our own doctors - especially at the get-go.

Now, if your doctor is not up to speed, I hope s/he may want to see the ILADS site and talk with other doctors who've walked many miles with this. www.ilads.org


Best of luck.

-

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Jamielee
Junior Member
Member # 16228

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Well....we went to the doctor today and she took him off of the

amoxicillan and put him on 200 mg a day of Doxy for three

weeks...I did everything but scream at her while she whipped

out the Infectious Disease handbook and showed us where it

recommends 3 weeks of doxy treatment and that is all she

would give us...so we took that but I am not convinced that is

going to be it....so I am going to start calling the list of LLMDS to

see if there is any who take insurance or new patients! Thank

you all again for all of your info and support....you give me hope.

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Jamielee
Junior Member
Member # 16228

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Well....we went to the doctor today and she took him off of the

amoxicillan and put him on 200 mg a day of Doxy for three

weeks...I did everything but scream at her while she whipped

out the Infectious Disease handbook and showed us where it

recommends 3 weeks of doxy treatment and that is all she

would give us...so we took that but I am not convinced that is

going to be it....so I am going to start calling the list of LLMDS to

see if there is any who take insurance or new patients! Thank

you all again for all of your info and support....you give me hope.

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sixgoofykids
Moderator
Member # 11141

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I'm glad you are becoming informed. Be sure you tell the LLMD that he just got bitten so maybe they squeeze him in before the doxy runs out.

That is a low dose of doxy .... check out the Dr. B treatment guidelines on www.ilads.org.

--------------------
sixgoofykids.blogspot.com

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