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Author Topic: I a new here....
ltowns
Junior Member
Member # 21863

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Hi... I was diagnosed with Lymes Disease July 30, 2009. I am currently on doxy 100 mg and have been feeling pretty crappy. Is this normal? I have no energy I am tired all the time and my symptoms have seemed to get worse. I have a Dr. Appt today to ask these questions and to make sure that this is "normal". Do you ever get over this disease and will it ever go away? What can I do to make myself more comfortable during this treatment?? Thanks
Posts: 6 | From Denver, CO | Registered: Aug 2009  |  IP: Logged | Report this post to a Moderator
Nicole_Denise
LymeNet Contributor
Member # 20620

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Duplicate post. TO delete this, click on the pencil icon. Then select the "delete entire post" (ignore the message- you can delete your own posts)
Posts: 503 | From Alberta, Canada | Registered: Jun 2009  |  IP: Logged | Report this post to a Moderator
DaveNJ
LymeNet Contributor
Member # 17362

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Itowns,

Yes you will feel sicker while you treat. Not sure how long you ahve had it but if you've had acute onset and were recently bit then your prognosis for a hort illness are great. if that is not the case yo ucan still beat it but it takes times. If you ahve it for a while teh 100mg is way too litte and may be too little even for a new case.

Others will chime in for sure.

Dave

--------------------
On my journey to wellness - One day at a time.

Posts: 989 | From NJ | Registered: Sep 2008  |  IP: Logged | Report this post to a Moderator
bettyg
Unregistered


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yes, please DELETE DUPLICATE post...


but please CUT DAVE'S post to you and PASTE it to your other duplicate post where we have left replies on.


this way dave's tme, efforts, and brain power are not wasted on this duplicate post.


to find other post quickly; click on your PROFILE, 1st box to right of your name.

VIEW RECENT POSTS; click on 2nd post, and PASTE dave's reply on that one. thx

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mv
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Member # 21888

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Beside the Lyme the doxy will make you fee nasty. It's pretty powerful stuff. You should also be taking probiotics with it to minimize side effects. While instructed to take it on an empty stomach I did find that if it's causing a lot of nasaeu you can take it with a small meal that does not have calcium in it. That has helped me quite a bit. Just don't quit. As crappy as it's making you feel it's a step toward getting better!!
Posts: 28 | From southwest | Registered: Aug 2009  |  IP: Logged | Report this post to a Moderator
ltowns
Junior Member
Member # 21863

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Sorry but I believe I deleted the post that several messages were left. If you could please post again i would appreciate it. I am new to this and trying to learn the ropes. Thanks and sorry for the confusion.
Posts: 6 | From Denver, CO | Registered: Aug 2009  |  IP: Logged | Report this post to a Moderator
ltowns
Junior Member
Member # 21863

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Dave - I am not sure how long I have had lyme. I started feeling really sick back in April 2009 5 months ago. I was very sick with head pressure, ear pain, neck pain and so much more. It went away for about 2 weeks and then it came back Memorial Day weekend. I have not felt like myself since. I had a blood test done ELISA test and it came back inconclusive. I then had the Western Blot test and it came back positive. My Dr. has never had a "real" lyme patient and I believe is just following the basic treatment of antibiotics for 4 weeks. How do I know if this is going to help me or if I should seek other treatment? My symptoms are day to day. Some days I feel good (not 100% but good) and some days I just feel horrible. I have 2 more weeks left of Doxy 100 mg left. Not sure how I will know if it is working. My main symptom right now is pain behind my right ear and tightness in my neck through my right shoulder that seems to never go away. When it does subside I have a different kind of pain like I have been hit on the side of the face and it its just sore. I havent had a day yet that I have been pain free. Will I ever feel normal again. How will I know if the antibiotics have killed off the bacteria? Is it a wait and see game?? My Dr. is not sure what stage I am at right now but I believe it is not acute. I think I am at a later stage. Not chronic but not acute either. I appreciate your help and I just need someone who understands the craziness I feel sometimes. My husband has seen me sick but I dont think he really understands how bad I feel. Because on the outside I look the same!!!
Posts: 6 | From Denver, CO | Registered: Aug 2009  |  IP: Logged | Report this post to a Moderator
DaveNJ
LymeNet Contributor
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Itowns,

it certainly sounds like your Lyme is a bit more advanced than a new case of someone just being bitten. That perhaps being the case means you will have to treat until you are symptom free. For sure you will need to find an LLMD unless your doctor is willing to read Dr. B's guidelines and follow them.

Based on your symptoms i would say that your dosage is not enough to do anything other than keep it from multilplying(bacteriastatic).

I too was given 100 mg x 2 days a year after getting bit and i had no response. i later read Dr. B's guidelines which state that anything less than 300 mg a day for dissemanted Lyme is not enough. your symptoms clearly sound like it is dissmenated Lyme at minimum. Just the same if you get right on this the prognosis is good.

based own experince i wuld tell you that every day mattters. Knowledge is power with this disease. You must read Dr. B's guidelines and be smarter than the doctors you are seeing. The guidelines are right here in the newbie section.

Keep the Faith,

Dave

--------------------
On my journey to wellness - One day at a time.

Posts: 989 | From NJ | Registered: Sep 2008  |  IP: Logged | Report this post to a Moderator
ltowns
Junior Member
Member # 21863

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thanks for your response ... I see my neurologist tomorrow WHOM I THANK FOR BEING THE FIRST TO EVEN THINK IT MIGHT BE LYME. I will ask him what to do next and if 100 mg doxy will be enough. He seems to be a little more educated than my Primary Dr. on Lyme! Cross fingers and hope that he gives me some good answers! Thanks again for listening!
Posts: 6 | From Denver, CO | Registered: Aug 2009  |  IP: Logged | Report this post to a Moderator
ltowns
Junior Member
Member # 21863

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I printed out Dr. B's guidelines and taking them home to add to my collection of reading material...
Thanks

Posts: 6 | From Denver, CO | Registered: Aug 2009  |  IP: Logged | Report this post to a Moderator
bettyg
Unregistered


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if you delete your posts; they are GONE FOR GOOD!!


please write SHORTER PARAGRAPHS for us neuro lyme folks who can't read or comprehend as you wrote them; then we can assist you. use my guidelines below to break up each of your longer paragarphs; thanks [Smile]


Welcome; I'm so glad you found us!! You've come to the right place for education and support!


lyme disease and CO-INFECTION symptoms lists .... check it out..
http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/81386


Dr. Burrascano's most recent "Diagnostic Hints and 2008 Treatment Guidelines for Lyme and Other Tick Borne Illnesses" .
http://www.ilads.org/lyme_disease/treatment_guidelines.html


PAGES 17-19 discuss ADULT & KIDS MED TREATMENTS!
http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/80440?#000006
Dr. B's Supplement List
http://www.lymepa.org/Nutritional_Supplements.pdf


this link, making the most of your LLMD visit, may help you also.
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic&f=1&t=020605#000005

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/77378

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

TREEPATROL'S NEWBIE LEARNING LINKS ... over 1000 links of good info and guidelines galore!! MUST SKIM & READ !!

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/29917
************************************************************************


Betty's suggested POSTING GUIDELINES . 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 ``TWICE`` after each paragraph; we need that space for comprehension.

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

we thank you for helping us; 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.
------------------------------------------------------

People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.

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

Type your state name and lyme as one word, like this -
http://health.groups.yahoo.com/group/newyorklyme

South Carolina is the only state that needs a hyphen between the statename
and lyme, e.g. http://health.groups.yahoo.com/group/southcarolina-lyme

The groups are moderated and you have to apply. Most 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.
*******************************************

This explains the medical politics around lyme WHY you need an ILADS-educated or ILADS-member LLMD (and there are also some ILADS-member LL NDs (naturopathic doctors):

www.clinicaladvisor.com/Controversy-continues-to-fuel-the-Lyme-War/article/117160/


TESTING

You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:

www.igenex.com IGENEX

-----
There are a couple other good labs for certain tests: Fry; Clognen; Focus. Your LLMD will know.
========================

VERY important to read - even BEFORE testing:

Dr C's Western Blot explanation is discussed here:

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=042077

"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.

Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.

But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.

Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.

Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.

Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.

But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM."
===========

TREATMENT *** www.ilads.org

ILADS
The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.


UNDER OUR SKIN dvd LYME DISEASE documentary,
www.lymediseasefilm.com
go to this site to view trailer of UNDER OUR SKIN 5 min. Clip! Premiering 2008!! on big screen 09 in 10 LARGE CITIES ONLY!

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


please get a western blot igm and igg blood test drawn LOCALLY on a mon. or tues. and sent to the below ok! all details are there.

IGENEX , CALIF. BLOOD TESTINGS ...check current $$!

* Please note: What you are about to read below is NOT meant to scare any of you from any lyme testings done; it's meant to be informed PRIOR to going into having various tests done and then be told what the costs will be!
* Mine was sticker $$ shock on various testings done by my 2nd LLMD/new to me in 4=06. Those tests/results are found elsewhere in my links/advise.

* Igenex's charges for these below things cost $905, which I figured up the last 2 days for 2 other folks includes

* The below tests were done for ME; you MAY NOT NEED them all ok! :

* western blot IGM & IGG, this is MANDATORY for you which costs $200 total for 2 tests done; 6.09 same prices still.
*
* *******************************************************
* OPTIONAL ONES ARE:

* co-infection panel for YOUR AREA OF COUNTRY;
* PCR WHOLE BLOOD...this is what my LLMD ordered!

It's PREPAY! unless you are on medicare; IGX will file the
paperwork & it's FREE to you.

go to www.igenex.com and read over their info.
Prices go up twice a year: MAY and NOVEMBER!!

*
* have blood drawn MON. or TUES. only; you don't want your blood sitting in post office over the weekend; will ruin the results!

* Also, call 1-800.832.3200 for CURRENT PRICES!
* They will also send you a ``test kit'' with their required form, all the test vials, & box to ship it in! OUT OF USA will take longer to receive!

* You need to DOWNLOAD IGENEX's required form.******************************************************
*
* MD, DO ,ND, AC, DC are all fine** must sign, date, and show DIAGNOSIS CODE on there why he's ordering the test.

Make sure you show to FAX results and SNAIL MAIL PAPER COPY! My results were lost for 4-5 weeks! Bettyg 
*
* When you get your results, please post them in MEDICAL;
* Post ONLY the POSITIVE & IND ones ....
not the negative ones!

GET COPIES OF ALL YOUR SPECIAL BLOOD TESTS: western blot igm/igg and/or co-infection tests always!!

* Also, look for post by LYMETOO/TUTU on DR. C's (Missouri) explanation of the western blot IGM & IGG numbers, below!

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=

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DaveNJ
LymeNet Contributor
Member # 17362

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Itowns,

just be prepared for this new Dr to tell you things that may not be in agreement with the DR. B paper. if he does you need to find a LLMD.

wouldn't tell you that unless i experienced it first hand. Very few Neuro's are educated on this IMO.

Dave

--------------------
On my journey to wellness - One day at a time.

Posts: 989 | From NJ | Registered: Sep 2008  |  IP: Logged | Report this post to a Moderator
   

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