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4205163 tn?1354290060

Lyme it is!.

I was offically diagnosed with Lyme yesterday. She started me on Doxy. Any advice about the meds, detox or supplements? All she told me to do was to start with 1, then 2 then 3 then 4 a day and thats it. Ive been reading and it says I should be on probotics etc...I'm so overwhelmed!!
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Avatar universal
make sure you take pro biotics.
i repeat   take pro biotics.  yogurt is not enough.

antibiotics can really mess with your gut. and make you very very  ill.
I got c. Diff and it  was horrible.  look it up.
there are about 4 or 5 things that can really harm you.

this is why docs are leary of handing out abx if tests are not absolutely positive with symptoms.  if people do not take the pro biotics then they have a good chance of getting other bugs.

it inflamed my gallbladder , and my intestines. nasty bug c.diff.

i was in the hospital for 5 days. at first they thought i needed my gal bladdar removed and then the c.Diff cam back positive

  and gal bladder was only putting out 15% they think that when the everything calms down and the c.diff is gone then my gall bladder will be ok.

if you have a lot of diarrhea have your MD do tests on stool samples.

just sayin'
make sure you take pro biotics. i didn't.. they said to but i didn't dumb me....
..because no one told me that if i did not  take pro biotics that something  this bad could happen.

ABX are nothing to take lightly. they are serious meds. too many and resistance sets in and one day you may get MRSA.. nasty.

from what i understand these are the kinds of ABX that can lead to resistance...

http://en.wikipedia.org/wiki/Cephalosporin

http://en.wikipedia.org/wiki/List_of_β-lactam_antibiotics

we all have to do our homework because many docs do not have time to explain all of this..
Helpful - 0
Avatar universal
The medical world concluded that what was thought to be one illness, Ehrlichiosis, was really two, now called HME (Ehrlichiosis) and HGA (Anaplasmosis).

From what I understand, Ehrlichia is treated with the same meds that are used for Lyme.  It can be quite nasty in its own right.
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Avatar universal
Good for you for plowing ahead to get a diagnosis!  

I don't know the details on Ehrlichiosis, but I think it's usually treated with doxycycline.  I do know that it's *not* leukemia -- it's a bacterial infection that likes to mess with certain blood cells, so some of the testing for Ehrlichia may also be used in diagnosing leukemia.  But definitely different diseases.  My understanding is that it's a LOT easier and faster to treat than Lyme.

Wikipedia has a write up on ehrlichiosis -- it's confusing to me because there are different types of Ehrlichia (like HGE and HME, as you noted), and the names have been changed a bit over time as the 'family tree' of Ehrlichia has become better understood.  

You're on your way now -- getting a doc who does a proper diagnosis is the trick, and sounds like you've done it.  So don't worry, find out what the doc's game plan is, and go for it!  Keep us posted --
Helpful - 0
1763947 tn?1334055319
It is great that you got diagnosed because you can start treatment and start to get better. :)

If my Lyme brain remembers correctly HME in Lyme is in the co-infection Ehrlichios (sp?)

I don't have that co-infection so someone that has had it could tell you more.

I don't believe it is leukemia related. You will need different antibiotics though.

I know that Burascano treatment guidelines mentions the co-infections and the medications to take. On ILADS dot org.

We have all been where you are, scared and overwhelmed but you are on the right path! We are here to help!
Helpful - 0
4205163 tn?1354290060
thank you everyone for all your help. I just received the results in the mail.  It says I tested postive for burgdorferi, Lyme IgM Western Blot and weakly postive for the HME panel (monocytic) which scares me because I google it and Leukemia came up. I don't understand the results at all, I'm just reading my docs notes.
Helpful - 0
Avatar universal
Welcome! A great bunch here, with more knowledge than most of the dr's I've seen put together.

I'm pretty much a newby to all of this and can sooooo relate to the feeling of being overwhelmed.  In amongst wading through the medical info & natural herbal info I have found it really helpful to get outside whenever possible and change my focus for a little while.

As "High School Musical" would say....."We're all in this together!"
Helpful - 0
Avatar universal
Yes, Lyme can cause OCD.  I had some obsessive thoughts, especially about my Lyme symptoms. For a few weeks, it was all I could think or talk about. When my mom and husband both said I was obsessed, I bristled.  I didn't think I was obsessing at all. I was so miserable, it made complete sense to me to talk about Lyme endlessly. I am happy to say that symptom faded out. ;)

And Stargazer_Lilies said it well about multiple abx.  I have been on at least two at a time since my second week of treatment.
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4205163 tn?1354290060
thank you so much for all this information!! I would be totally lost if I didn't find this site!!
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1763947 tn?1334055319
Just got back and stargazer said it better then I could. :)
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Avatar universal
Spirochetes has ability to morph into "rounded" aka cyst forms to protect itself from the antibiotics, and revert back to "motile" form after antibiotics is withdrawn,hence relapse.

So you want to have three type of antibiotics:
cell wall inhibitor--to kill motile spirochete when they reproduce
intracellular-to kill spirochete hidden inside cells, including WBC or RBC
cyst buster--to bust open rounded form of spirochete so it can be killed

If you have all three types of antibiotcs at once, then spirochete has no place to hide.
Helpful - 0
4205163 tn?1354290060
What's a cyst buster for?
Helpful - 0
1763947 tn?1334055319
Hi, glad you are at the right place, at least now you can treat it.

I never got sick from doxy but i did herx (herxheimer reaction) which is a worsening of symptoms from a die off.  A good thing really.

I knew I had Lyme for over a year until I was treated so I was very relieved.
I would add to what everyone said that you should have a cyst buster added at some point. Tindamax or Flagyl comes to mind depending on if this was a recent bite or more chronic.

My Lyme brain doesn't let me remember if you know this but its a good thing to scan over Burascano's treatment guidelines which you can get from ILADS dot org. Knowledge is power.
Helpful - 0
4205163 tn?1354290060
I asked her for a copy, she is going to mail it to me, since she gave me the results on the phone and shes 3 hours away from me. I had a complete lyme test plus all 16 coinfections.
Helpful - 0
4205163 tn?1354290060
YES I feel so relieved. As you know I was diagnosed with MS so this is a way better alternative. I had read that you shouldn't take tums or calsium with this med. Good thing for OCD and I have researched A LOT. Isn't OCD a symptom?? I haven't been sick at all, except for anxiety attacks and numbness in the middle of back and bottoms of my feet. I also get pains in my kness. Those symtoms come and go. I've heard that doxy can make you sick, is this true? I have 4 kids oldest is 7 so I'm scared it's going to interfer with my daily life.
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Avatar universal
I don't recall my doc (an LLMD, even!) or my pharmacist saying anything about calcium or mineral supplements either.  I saw it in an article headlined about grapefruit interfering with many meds.  Way down in the article, it listed some other conflicts, including calcium and some minerals with the tetracyclines. Only after I looked at the little stickers on my prescription bottle did I see in tiny print to avoid magnesium, aluminum containing antacids, calcium or iron 2 hours before or after a dose.  I already forgot once and had a scoop of ice cream right after a dose.  I might need to put post it notes on my yogurt and cheese so I don't absent mindedly eat them near a dose.

I wonder how many cases of disseminated Lyme have occurred because patients didn't know about the calcium thing!  And of course the IDSA guidelines say that 3 weeks of doxy always kills an early case of Lyme.  BUT NOT IF YOU TAKE THE DOSE WITH CALCIUM!  You'd think with a life ruining infection on the line that doctors would be very clear on this.

If I were you, I would call up the doc and get a refill.  You'll want to take it longer if half your dosage has been compromised.
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Avatar universal
Oh jeez, I just started doxycycline 2 weeks ago and have been taking the 2nd dose at bedtime with Tums!! I am so glad I found this forum-wish the Doc or pharmacist would have told me this.
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Avatar universal
Wow!  How do you feel about it?  Relieved?  I was diagnosed exactly a year ago today, and I was just so glad to finally have an answer and a plan. How long have you had Lyme?

Yes, you'll need probiotics.  Good ones!  (I use a brand that is stored in the refrigerator.)

Make sure you avoid calcium rich foods within 2-3 hours of a dose of doxy.  Calcium bonds to the drug, rendering it ineffective.  My Rx for it also says to take iron and magnesium 2-3 hours from a dose, also.  

Are you on a magnesium supplement? It really helped me in multiple ways.
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Avatar universal
and PS, how long are you supposed to be on the antibiotics?  Did the doc say?
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Avatar universal
Welcome to the club ... I think??  But it is good to have a diagnosis, because now you can treat it.

Others here can speak in more detail, but if you have been ill for longer than a few weeks at most, taking only doxycycline may not be effective.

Also, were you tested for other infections the same ticks often bring along with Lyme?

If your doc did not give you hard copy of ALL the test results, whether positive or not, get copies of them for your own files, and let us know (if you want to) (1) what you were tested for and (2) what the results were and (3) what lab(s) ran the tests.

Taking probiotics is a good idea.  There are two kinds:  

(1) acidophilus-based probiotics, which are the most common kind; and

(2) Saccharomyces boulardii (=S. boulardii, also brand name Florastor), which are less common, but Lyme docs sometimes recommend them.

Both are available without prescription, at a pharmacy or online.

-->> The acidophilus probiotics cannot be taken within several hours of also taking antibiotics, because the probiotics will cancel out the probiotics and be useless.  I forget what number of hours of separation are recommended, but you can find it online or in the instructions or ask a pharmacist.

-->>  The advantage to the Florstor-type probiotics is that you can take them at ANY time, because they do not cancel out the antibiotics.  Some people are sensitive to these yeast-based probiotics, but it's rare.  (It happened to me, and I got a massive systemic yeast infection from it, but my LLMD said he had 'never' seen that happen, so I must be very special.  If you are inclined to get yeast infections, then talk to your doc about what approach to take.)

Hope that helps!
Helpful - 0
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