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» LymeNet Flash » Questions and Discussion » Medical Questions » is doctor aggressive enough?

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Author Topic: is doctor aggressive enough?
concerned mother
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My son is not doing well again. He is in his fourth week of doxy and is only on 200 mg of it. He is having pain in his legs and then they go numb. We were hoping that he could go back to school this week half time. But I can see he still is not ready. We did get this early and hope that he recovers the same way. Should I see another LLMD? I do not know what to do, but want the best for him at this point.

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Amy Holloway

Posts: 255 | From Michigan | Registered: Oct 2005  |  IP: Logged | Report this post to a Moderator
robi
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This can take a long time to go in to remission/cure(?). Are you seeing a real LLMD? That is very important. I guess by real I mean someone that is familiar with and a member of ILADS.

There is really no way to know if this is your son's first exposure. So it may have been dormant for a while before he became symptomatic. It is important you trust your doc. If you don't, then take him for another opinion.

I tried 3 docs at the beginning of my journey. I ended up staying with my original choice but was glad I lookd around.

How old is your son? Is he on anything with the doxy? I did doxy alone for a month or so before getting a second drug. Have you talked to your doc about your concerns?

Peace,
robi

robi

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Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy'

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Sammi
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Hi concerned mother. How old is your son? How long was he sick before he started treatment?

Do you think he is herxing now?

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concerned mother
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son is 16 years old and is also taking herbal things with the doxy. I will be calling the doctor on Tuesday to discuss things. It is hard here in Michigan to get another doctor. [Eek!]

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Amy Holloway

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Sammi
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Is he seeing Dr. L? Good luck tomorrow. Let us know how it goes okay?
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char
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Hi Concerned Mom,

I think you should do some research and find a serious lyme dr. This is why I feel this way-

My kids got diagnosed with lyme a yr ago. They had it 4yrs by then.

We have been to a handful of drs. The first 2 were not lyme literate and had my daughter on dioxy. I cannot remember dose but between 200-400.

After 2 rounds of this with a few wks in between, we got to a lymeliterate dr who got her on IV rocephin for 11wks.

Did orals for next 6mos with little progress. So a yr has gone by and she is some improved, but was home for 8th grade and now missing 9th.

My son's story is about the same.

We moved and are now seeing a infectious disease dr who is considered one of best in country.

The care and treatment is far better and she is now improving. Our 1st lyme dr. was above average, but this specialist is phenomenol.

All this is to say my advice is to go all out right now and get your son to the best dr you can possibly get him to. I have heard from the midwest folks that there is one in MO; some go there and some go to NY.

Most drs, even ID drs do not know much about lyme and it can be a waste of money and kid's precious growing up yrs. Not to mention that longer lyme is unchecked the harder it is to get rid of it.

Char

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k-lyme
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Hi concerned mother,

Tell me, how long has your son been taking these herbal supplements? It has been published that some herbal supplements contraindicate with certain antibiotics and can either make them less effective or cause a combined toxic effect. Check this website out (it is ingenious if you ask me!)- http://www.wholehealthmd.com/

This website is special as it has a search engine to check and see if the herb that you're taking contraindicates with the pharmaceutical that you are taking.

I hope it works,
Take Care,
K-lyme

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treepatrol
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Some herbs takin to close to abx's can bind them and make them less effective. Be careful

--------------------
Do unto others as you would have them do unto you.
Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.

Newbie Links

Posts: 10564 | From PA Where the Creeks are Red | Registered: Jun 2003  |  IP: Logged | Report this post to a Moderator
Michelle M
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quote:
Originally posted by concerned mother:
My son is not doing well again. He is in his fourth week of doxy and is only on 200 mg of it.

Amy, this part really worries me.

It seems to me that he should be on twice that much.

Is this, as Robi points out, an ILADS doctor? Because I'm pretty sure the guidelines call for a higher dosage than that.

I'm sure there are lots of ducks walking around proclaiming themselves capable of treating Lyme who really haven't got a clue. I would HOPE your son isn't under the care of one of these.

Doxycycline IS a typical starting point; however, not usually 200 mg a day. Please call this LLMD and ask why your son is on such a low dose. Ask why it can't be doubled. Granted your son may herx like crazy but at least would be making progress.

Keep reading and asking questions!

[group hug]

Michelle

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concerned mother
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Thanks I'm waiting for the doctor to call me back!

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Amy Holloway

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cantgiveupyet
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im hearing more and more patients say their llmd put them on 200mg of doxy. I think it may becoming the standard for someone in their first month of treatment. Good that you are calling though. Good Luck

--------------------
"Say it straight simple and with a smile."

"Thus the task is, not so much to see what no one has seen yet,
But to think what nobody has thought yet, About what everybody sees."

-Schopenhauer

pos babs, bart, igenex WB igm/igg

Posts: 3156 | From Lyme limbo | Registered: Oct 2005  |  IP: Logged | Report this post to a Moderator
concerned mother
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Thanks between this and the stress of the school not understanding I'm going nuts over here. [bonk]

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Amy Holloway

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cbb
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Hi Amy,
Sorry your son is not doing well.
You've been given some good info to consider.

My question-
Is your son taking adequate amts of Acidophilus?

Antibiotics (abx) kill the good bacteria along with the bad bacteria. It is necessary to replenish the good bacteria with high quality Acidophilus (Health Food Store) to maintain the balance in the body.
If not, a systemic yeast infection (Candida) can develop. It is much easier to prevent the problem than to have something else to cope with.

Eating right kind of yogurt is good, but in my opinion, acidophilus capsules are needed, too.

Eliminating as much sugar & carbs as possible will help.
Lots of water each day will wash the toxins out of the body.
Adequate rest is important.

IF THE PATIENT is able, light exercise, like walking, is good, but never overdo!!
Exercise increases body temperature & increases oxygen level. Spirochetes don't like either one.

If you don't have a copy, print "Diagnostic Hints & Treatment Guidelines..."
www.ilads.org/burrascano_0905.html
It's 33 pages of excellent info!!
Includes info on nutrition, exercise, & acidophilus. He recommends 2 capsules with each meal.

If Doxy is taken with meals, plan a snack later for the acidophilus.

ALWAYS be sure there is at least 2 hours between abx & acidoph - before & after - or it won't be able to work. I plan my pills so the acidoph is always last in the evening. Gives it all night to help before hitting it with abx again in the morning.
My 13 yr old grandson takes lots of acidophilus, too.

Keep in touch.
The LymeNet Family will help as much as possible.

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concerned mother
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Thanks for the insight. We are taking some kind of good bacteria called ultral flora. So I think that is what you are talking about.

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Amy Holloway

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LymeLaura
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Was he doing OK before the 4 week point? I understand that herxes frequently occur at 4 days and 4 weeks. He may just be having a herx.

My doctor started out with Doxy for one month, then added Bactrim for month two.

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concerned mother
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We did have some good days and maybe this is just a herx. I think we were hoping he could be at school with his friends after christmas. I'm learning so much about this disease. I wish there was a way to carry the load for him. It hurts me so much to see him this way. HE loves life so much and sports too!

Today has just been a bad day!
[dizzy]

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Amy Holloway

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christelleny
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quote:
Originally posted by concerned mother:
He is in his fourth week of doxy and is only on 200 mg of it.

I stayed on Doxy for months before being able to graduate to "stronger" abx. My LLMD even had to reduce Doxy to 100mg after the first month because I had trouble tolerating it.

Even after 1 year of more aggressive treatment, I'm still on baby dosis each time a new abx is introduced.

You may want to discuss the issue with your LLMD and ask why the treatment isn't more aggressive. There may be a very valid reason behind his choice... liver problem, strong herx etc.

I discuss everything with my LLMD. He probably thinks I'm the biggest pain in the butt, but it never upset him - and it shouldn't.

Good luck to you and your son.

Posts: 159 | From CT, USA | Registered: Jan 2005  |  IP: Logged | Report this post to a Moderator
   

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