posted
I am once again seeking advise from all my Lyme friends on this forum.
I just completed a month long run of Doxy (100 mg twice a day), saw my ID Dr. on Thur. and he did some more blood work (to include a Western Blot)
I tested negative (unk type of Lyme test) a few days prior to Christmas. My ID Dr. diagnosed me with Lyme (clinical) based on symptoms.
I felt terrible the whole month while taking the Doxy. Yesterday, after being off of the Doxy for 3 days, all hell broke loose.
My symptoms (mainly head and ear pressure, hearing loss, funny feeling in the right eye, knee pain and stiffness) hit the ceiling.
I also noticed that I had to keep going to the bathroom to urinate, and I wasn't drinking alot ofla water.
The most bizzar thing that I noticed is that whenn I went to get a piece of fruit from the "fruit" plastic drawer in the frig, the drawer felt ice old to my fingers.
My tinnitus was going crazy, and I noticed that the different tinnitus sounds were switching sides on me. I usually just have a ring on the right and a roar on the left.
This lasted all afternoon, evening, and finally subsided after midnight. I had no appetite at all; I have already lost 20 lbs since becoming sick in aug/sept.
My LD Dr did not suggest that I get the Doxy refilled; I guess I should have asked. He did schedule me for an EKG on monday, he believes that Lyme may be effecting my heart (in a non-lethal way) he advised.
Needless to say, I was quite freaked out through all this. I did feel some better this morning.
My question is, should I refill the Doxy and continue taking it? Also, did I experience another herx by natural means (my immune system), or did the Lyme critters just decide to come and play very hard yesterday?
I am finding out that this disease is very strange and unpredictable, and can really cause havic to your body.
I thank you all in advance for any advise. I received several replies to my initial post, lots of good advise and moral support.
You are all in my prayers for a recovery to better health!!
Posts: 21 | From ohio | Registered: Jan 2011
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posted
It sounds like your ID doc is open minded, which is great, and can't be said for most of them. Unfortunately, he doesn't understand how to treat Lyme properly.
I'd really recommend reading through all those replies again... a lot of good info and suggestions.
According to Dr. Burrascano, In order to properly treat Lyme you need to continue the abx until you are symptom free for two months. The one month of doxy you completed (at a pretty low dose) was not nearly enough.
If I were you, I would refill the prescription as soon as possible and find a LLMD. Schedule the soonest appointment they have, and see if you can be put on a cancellation list.
If you're able to, you should also start on the supplements detailed in the guidelines until you can consult with a LLMD.
Posts: 340 | From san francisco, ca | Registered: Nov 2010
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I agree with 5vforest - get a good LLMMD.
Your dose of doxy is 1/2 of what is normally given except for the time release types + you have not been on it nearly long enough if you have lyme. You might want to look up bacteriostatic vs bactericidal.
Symptoms that come crashing back so soon after stopping abx likely indicate a co-infection but I'm not sure if that changes given you were not on a bacterialcidal dose of doxy.
A good LLMD will run all the necessary co-infection tests and more importantly, most will do a good differential diagnosis and if it is lyme, they will treat appropriately.
If your ID doctor is interested in learning more about how to treat lyme there are programs through www.ilads.org
You may want to locate your local group to see if they have additional resources for your doctor.
Terry I'm not a doctor
Posts: 6286 | From Oregon | Registered: Jan 2006
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
You MUST get tested and treated for co-infections. And continue to treat your Lyme. Please find a competent LLMD.
Not to sound dire, but the rest of your life depends on it.
posted
When me and my LLMD were trying to see what I had (because I'm one of those who just can't seem to get a blatantly positive test on ANYTHING), we started with Doxy. We did not know I had bartonella at the time. I was on Doxycycline 400mg a day (200 twice a day) for three months. I herxed a LOT, but then I just stopped herxing, so we switced to Ceftin. Ten days after stopping Doxycycline prematurely, all hell broke loose and I ended up in the emergency room.
We THOUGHT it was because of the Ceftin killing the Lyme at the time, but it turns out it was actually because the Doxycycline "woke up" the bartonella and then we pulled away the treatment, so it didn't have anything stopping it from replicating. Doxycycline doesn't kill them, it just stops them from reproducing. Bartonella replicates every five days, which is why is took 10 days (2 replication cycles) for it to come back with enough force to hospitalize me. That coinfection comes back IMMEDIATELY if you do not eradicate it.
I'm worried for you that if you DO have bartonella and you stop treatment you might also be hospitalized. I agree with BoxerMom that you have to find an LLMD very soon and get tested for coinfections (even though they don't always show up--I STILL test negative for bartonella). And if it were me, I would go back on Doxy as soon as possible. I did not get any warning before we had to call the ambulance, I just became rapidly ill within a matter of hours.
Hope this helps somehow
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 Posts: 512 | From USA | Registered: Sep 2010
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