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» LymeNet Flash » Questions and Discussion » Medical Questions » Treatment Question

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Author Topic: Treatment Question
cjohnson
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Hi all, I have recently been diagnosed clinically for Lyme and started treatment. I am currently on 100mg Doxy (3 a day) and 500mg Ceftin (3 a day). Does this seem like aggressive treatment or is this a normal dose? What are others taking?
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Leelee
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I think there are many different protocols. I am on 100 mg minocycline and 600 mg Zithromax. I started treatment in April.

Hopefully next week my LLMD will add Bactrim. He has been talking about doing that at some point.

--------------------
The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr

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DaveNJ
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CJohnson,


if you want to check to ensure your dosages are strong enough please read Dr. B's guidelines...off the top of my head i think you are good to go.

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
sutherngrl
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I think it is a matter of what can your body take. Not everyone can do aggressive treatment and many have gotten well on lower doses than what is recommended in Dr B's guidelines.

So many people here think that it has to be aggressive and hard hitting and IMO that is just not neccessarily so. I have watched as many people have treated that way for years and are still not well, and I have seen people treat slow and steady and get well.

I don't think anyone has the answers for what dosage you should be on. That is between you and your LLMD and depends on what your body can handle, your medical history, etc. The treatment should be talored to your needs.

I never get why so many of us, come here and ask is this the right amount? Why do we even need LLMDs if we don't trust them to get us well?

Sorry for the rant, but this just gets to me! Why are we asking other lymies if our doctors are giving us enough meds? How can there be a set guideline for every single person to follow, when we are all so different? Meds should be prescribed according to our weight and our ability to de-tox, and many other things.

I hope I don't make anybody mad, but this has been brewing in me for a while. I apologize ahead of time if I do!

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cjohnson
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Hi, I'm actually posing this question because I was worried too much antibiotic. I'm not the type of person that likes taking medication so a little apprehensive and was just wondering what protocols others have used in initial stage.
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sutherngrl
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CJ, I totally understand your apprehension!

I actually started I guess you could say "moderate". I never did aggressive treatment like some people. Did okay for a while and then I had to back off. I am now on low doses and I think it is much better for me.

Like I said, I think it depends on what you can handle. You can always start slow and work up until you find the point that works for you. You really just have to work with your doctor.

To me there should not be any set standard for dosing. That doesn't even make sense.

Posts: 4035 | From Mississippi | Registered: Jul 2008  |  IP: Logged | Report this post to a Moderator
sixgoofykids
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Normal for Lyme .... you need to be more aggressive with it than other bacteria.

Be sure you are exercising as you are able, eating right, drinking lots of water, getting some sunshine, etc. so that you can get your body in as good of shape as you can. A healthy immune system is what you need, so it can help the abx to fight the Lyme.

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

Posts: 13449 | From Ohio | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
bettyg
Unregistered


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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; [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 found Turn the Corner Foundation through the website for the Under Our Skin movie. Here is the link for their website. At the bottom of their webpage there is a link to click if you are interested in getting help finding and LLMD.

http://turnthecorner.org/lyme-disease-quick-facts.htm

I emailed them for help and got a response with the names of over 10 LLMDS in two states in less than a days time. What an incredible blessing! Thought I'd pass it on.
By member Aimee, 7.11.09
------------------------------------------------------

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 $$!

OCT. 2008 PRICE LIST ... info only!! Showing what tests they do. PRICES HAVE GONE UP ON SOME!

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/78648?#000003


* 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!!

OVERSEAS INSTRUCTIONS FOR SENDING TO IGENEX/FRY LABORATORY! 2-23-08

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=063751


* 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=get_topic;f=1;t=042077

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Pinelady
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Are you sure he did not intend for doxy first and

then go to the Cef ? Did he give you anything to

control yeast? If this is truly what he intends you

may have to start slow and ramp up slowly.

--------------------
Suspected Lyme 07 Test neg One band migrating in IgG region
unable to identify.Igenex Jan.09IFA titer 1:40 IND
IgM neg pos
31 +++ 34 IND 39 IND 41 IND 83-93 +
DX:Neuroborreliosis

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cjohnson
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Hi Pinelady, yes I asked him twice and he advised to start both at the same time. There is one typo though, the Ceftin is 500mg twice a day.
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seekhelp
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More aggressive than any drug protocol I've ever been given by my LLMDs in 11 months. [Smile] Seems like a good combo. I can't handle Doxy so it wouldn't be for me though.

Sutherngrl, I know what you're saying. I think a lot of people hope to follow Dr. B's protocols because he got everyone cured/in remission.

Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008  |  IP: Logged | Report this post to a Moderator
Lymetoo
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Your protocol sounds like a good one!

--------------------
--Lymetutu--
Opinions, not medical advice!

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jtavares76
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I am taking Ceftin 1000mg twice a day. This was my LLMD's initial protocol along with various supplements and diflucan to control the yeast.

JT

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gemofnj
Frequent Contributor (1K+ posts)
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cj,

Your protocol sounds like a very thorough one.

Just want you to be aware to read the product info on the doxy. You MUST stay out of the sun or you can get a bad sunburn without turning red in just a few minutes.

DO NOT lay down within at least a 1/2 hour of taking this and do not take with dairy products. (you can do serious damage to your intestinal tract). Do take near mealtime or with food to avoid gastro problems or stomach upsets.

Doxy is a very powerful antibiotic.

Also, you LLMD may have you on loads of supplements, but one important one I would strongly recommend is to take either a REFRIGERATED prescription strength probiotic recommended by your LLMD, or a high culture/high strain probiotic purchased over the counter.

You can purchase this at a local health food store. Look for HIGH STRAIN and refrigerated.

Probiotics will replenish all the good bacteria that the antibiotics will destroy. You need to protect your gut from serious gastro distress that long term abx can cause.

They should be taken at bedtime and at LEAST 2-3 hours away from antibiotics or it will kill the live cultures. You can replenish often as you will need it while on your protocol.

There are lots of posts on probiotics. If you do a search of 'probiotics' at the top you will get loads of info and product recommendations.

Good luck and keep us posted. [Smile]

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cjohnson
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Thanks for the advise and guidance everyone. I'm currently taking a Probiotic, but nothing to control yeast. Also, I was not aware of the dairy/doxy combo being bad...so thanks for letting me know. I have been eating a yogurt and having cereal in the morning before taking the meds; I will start spacing out my yogurt.

Thanks again,
Chris

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