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» LymeNet Flash » Questions and Discussion » Medical Questions » PLEASE PLEASE HELP. Reinfected and I don't know what to do!

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Author Topic: PLEASE PLEASE HELP. Reinfected and I don't know what to do!
SashaC
LymeNet Contributor
Member # 18968

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Hi all,
I'm sorry, I'm panicking. I was infected with Lyme, babesia and bartonella in 2007. I've taken just about evry abx imaginable. My daughter also has lyme.

My symptoms finally almost abated this summer. Finally, after feeling like I was nearly losing my life more than a few times. I have been left with trigeminal neuritis, which is now being treated by an orofacial pain specialist in NJ.

On the 2nd of October after working in my backyard (in TX, where lyme "doesn't exist") I found an embedded tick on my left side. I pulled it off, compared it to pics online, and it was a wood tick.

I looked up articles and it said the wood ticks do not carry Lyme.

I do not have an LLMD anymore. After almost 5 years of paying for my daughters and my lyme treatment, I am flat broke.

I still fly her to see Dr. J in CT and fly myself to NJ to see my orofacial doc. I have to borrow money to even do that. I cannot afford an LLMD and will never be able to.

We are going to see Dr. J in 3 weeks. I am going to ask him what he suggests, I know he'll allow me some answers, but I don't want to wait the precious time in between.

The tick I was bitten by DID have lyme. I have a huge bullseye rash where I was bitten and every single symptom I have finally gotten rid of is back, and exactly as it began in 2007.

I have nausea, a horrible headache, I'm burning up and freezing at the same time, I'm soaked in night sweats, my muscles ache all over, my joints hurt, my ankles are cracking, my veins in my hands are popping out, my body is tremoring internally.

I don't know what to do. I'm totally intolerant of doxycycline. My pcp gave me a script for tetracycline 500mg 4 times daily. It is doing nothing. He told me that he would prescribe me anything I need, but he has no idea how to treat Lyme and I don't know what to suggest.

My daughter takes bactrim, zithromax, plaquenil, mepron, nystatin and tindamax (on the weekends)

Will any of those help? I know I know that nobody is a doctor on here, I just am desperately in need of advice on what is normally effective for another early case of lyme. Besides doxy.

Could maybe anyone share with me what you were prescribed on your first visit to an LLMD? Maybe in a pm?

I don't have any recollection of what my first LLMD prescribed when I first saw him. I can't call him, the Texas Medical Board forced him to retire for treating lyme.

Again, I'm not asking for medical advice, I know it is totally inappropriate to do so.

But if anyone would be willing to just give me an idea of what LLMDs normally prescribe for an almost 10 day old infection, I would be so so grateful.

Posts: 151 | From SW US | Registered: Feb 2009  |  IP: Logged | Report this post to a Moderator
sixgoofykids
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I'm so sorry you got bitten and your symptoms are back. I would go to http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf for ideas on how to treat. Your doctor could even contact that organization for help since he's open to treating you. That is great that he is open, most are not.

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

Posts: 13449 | From Ohio | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
Lymetoo
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Man, this is so bad and I am so sorry!! In my book, ANY tick can carry ANYthing.

See if anything here helps:

www.TreatTheBite.com

Maybe Biaxin??? Your daughter's plan sounds pretty comprehensive. Perhaps you wouldn't need ALL of those at first.

Take a pic of the rash .. MAYBE it will come in handy one day. If possible, get your face in the pic.

Again, I am so sorry. I think you can get this done without an LLMD if must be .. and it sounds as if it must be.

I feel for you on the nerve pain. I've had a few bouts with that myself. Excruciating is the word.

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

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little_olive
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Of the above, I can tell you Zithromax treats Lyme, mycoplasma, bartonella, and babesia. It doesn't treat ehrlichiosis very well. I'd look up the dosing in the B guidelines for Azithomycin, and see what the entails. If I were in your situation I would take that one since it covers most of the infections. As for ehrlichiosis, if the tetra isn't working for your symptoms, you probably don't have that infection.

Hope this helps somehow! Good luck!

[group hug]

--------------------
Myalgic encephalomyelitis, 2002 | Viral onset, following Hep B vaccine
Lyme since '06 | Bartonella since '08 (cured) | Mycoplasma pneumoniae since '08
IGeneX: IgM 31IND 34IND 41+ | IgG 39IND 58+ 41+++
IgG deficiencies and MTHFR 677TT mutations

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Lymetoo
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Zith by itself won't do it for Lyme.

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

Posts: 94228 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
little_olive
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No more than Doxy alone will. Both can cause the bugs to convert into cysts, and then... [Frown] But it IS effective, especially because it gets into the nervous sytem.
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Garden
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When we found an embedded tick on my daughter this spring, our practioner called in a 10 day script for Tindamax.

--------------------
Garden

"Fibromylagia" for 8+ years
Pos IgeneX WB per both Igenex and CDC
Pos Neuroscience MyLymeImmuneID
Started tx for Lyme in March 2011

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Lymetoo
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Tindamax?????? [confused]

True, olive .. same with Biaxin.

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

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Lymedin2010
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Sorry to hear about your tick bite. How long do you think the tick was on you before you discovered it?

I have heard that higher doses of Amoxicillin are effective for Lyme in the body, not as much for neuro Lyme as Doxy. I was surprised to hear it, but it comes from a biologist who worked in pharma and is currently an activist.

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TF
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I got rid of lyme and then got a new bite with bulls eye about 3 years later. I got to my lyme doc about 5 days after the bite.

He gave me doxy and Bactrim DS. This covered all infections. The instructions for the bactrim DS were to take one twice per day. I took these meds for a total of 4 weeks. Since I never had any symptoms other than the rash, I was done. That was 3 years ago now.

So, at least take the Bactrim DS to cover babs and bart. I don't know what med you can take along with Bactrim to give you lyme coverage. I got rid of lyme the first time by taking amoxicillin. Ask doc or pharmacist if you can take amoxi with bactrim. Trouble is that amoxi doesn't cover ehrlichia like doxy does. So, it's not perfect but still pretty good coverage.

If you take amoxi, be sure to take probenecid with it. Take 1,500 mg every 8 hours. Per Burrascano, some folks need up to 6,000 mg per day (which would be 2,000 mg every 8 hours).

"*Amoxicillin- Adults: 1g q8h plus probenecid 500mg q8h; doses up to 6 grams daily are
often needed" (page 18)

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Hopeful in Holland
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What about Minocin?? Should this not work?
Posts: 50 | From Holland, MI. 49424 | Registered: Oct 2011  |  IP: Logged | Report this post to a Moderator
little_olive
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Re: Tindamax -- "Tigecycline and [Tindamax] treatment reduced both spirochetal and [cyst] forms by ~80%90%" ( Recent study about effectiveness of antibiotics and their effect on the bacteria's converstion)


little olive

--------------------
Myalgic encephalomyelitis, 2002 | Viral onset, following Hep B vaccine
Lyme since '06 | Bartonella since '08 (cured) | Mycoplasma pneumoniae since '08
IGeneX: IgM 31IND 34IND 41+ | IgG 39IND 58+ 41+++
IgG deficiencies and MTHFR 677TT mutations

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nonna05
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yep,,High dose amox and zith/biaxim just until you get to your/daughter doc .augmentin but at 1000 dose with one of the others,since from same family..

.Although most people mention Zith...it also helps with inflammation.

I'm no doctor...and not as knowledgeable as so many others here .. But you're talking 3 weeks before one of the appointments..


.Get on something. [bow] [bow] [bow] [shake]

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lymielauren28
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I was reinfected last spring and went thru the same exact thing. I took 600 mg of Zith and 200 mg of Mino for 10 days and then transitioned back into my rife treatment ( I was rifing for my old infection prior to getting reinfected) IMO the Zith and Mino cover a wide range of infections - worked for me.

I know it's easier said than done (I was FREAKING out, I'm sure you are too) but try to stay calm and focused - If you can get a hold of some meds you can lick your new infection in no time and be back to your old self. I wish you the best and I'll be praying for you.

--------------------
"The only way out is through"

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