I pulled tick off in JUNE 27th of 2005 a week later i did not feel well. Went to the clinic and they saw bullseye. Gave me 200 mgs of doxy a day for three weeks said that should do it.
I live pretty much in the heart of tick land here in Ct. My wifes whole family and most of our friends out here have had lyme, of course out of all of them they were all helped with the 3 week course.my wife had it bad 10 years ago multiple bullseyes very sick, took two weeks of amoxil and never has had a problem since. GO figure...
Well i took that original dose, when those three weeks were up, i felt great, all behind me right? Little did i know i had just opened pandoras box of lyme.
three weeks later, huge fever, major symtoms, and feeling like death, go to clinic again and tells me relapse is uncommon and that i just had a fever probably a bug. Take into consideration this was all before i read or studied or was a member of this site or anything, real dumb.
So for the next 3-4 weeks i pretty much fall apart, think i am going to die, i finally realize through the little bit of research that i need to see someone else. I go to a doc in madison that a friend with lyme said helped her.
she orders up all kinds of blood work, says i still have lyme, puts me on 200 mgs of doxy for the next three months, at this time i have every single symptom on the checklist and am telling my wife if i die, that i really love her, stupid i know but i felt this to be true.
sorry to be a windbag but i am getting somewhere with this.....
so three months into this treatment and an hiv, thyroid, diabetes, hepc, lupas, 4 ekgs, and multiple blood work for co infections later, i am feeling better. I find lymenet and start really reading for hours, wow a place where people feel like i do, this is great i thought to my self.
well a bunch of you told me that my doxy was not enough in your opinion and that sparked my interest if my doc was undertreating me. so i go see her and i question the treatment and she says that this protocol works well for her,and her patients, well i leave with another month of doxy and then post looking for llmd on this site.
i find doc in wilton, doc P. and get an appt. HE too runs me for hiv, hepc, thyroid, and chem panel, looks at past results for co infections and does not say anything, he is very matter of fact and i feel like it is hard to go in and see him with a plan of attack.
So here we are at the present time, i have been on tetra 1500 mgs for a month, he just filled a script for month two, and wants me back in four weeks. i am pleased to say that he feels unconfortable dx me with chronic lyme because of undertreatment, and says if i got better on low dose, that was a good thing.
I am much better, matter of fact the two things that still bother me almost everyday is heat in the face, with redness, most of the time no temp. and fatigue. considering i had every single symptom to be down to these two is progress i know. i started back to a gym three weeks ago and have gone every other day. 2=3 miles on the tred, and 1 hour of weights.
THis must mean i am getting better right? Well the heat in the face, bothers the crap out of me, it has been with me every day almost, since june and i wonder if i will have it for ever. should the heat in face and fatigue be reason enough to treat for longer?
i did not have this before lyme, so i know most of this sounds like rambling cause it is, but what questions should i ask him? any ideas, at 300 dollars for thirty minutes after a 3 hour drive, i need to have a real plan, please give your ideas. you all have been so great and just logging on everyday makes me feel so happy and not so alone.
sorry so long, but after reading this, what do you think i should ask him as far as where this treatment is going.
Most of you are all on so much stuff and i am not and i wonder why, why am i still on doxy then tetra, when most here are on a bunch of cocktails. any replys would be helpfull. thanks DJ
-------------------- D.J. Lyme Posts: 69 | From shoreline CT | Registered: Dec 2005
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Doxy, and I believe tetracycline, make you very sensitive to the sun. The heat on your face may simply be sunburn.
Try some sunscreen and see what happens.
-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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posted
Hi DJ, Ready for the big storm tonight? (At least I know the ticks will get a good snow cover in my yard so they can't latch on and kill me...)
So dr. P put you on tetra? Lets see...I also have maddening heat in my face (also ears neck and back of head...) This heat was there before tmt and now comes and goes - usually less in the AM worse by around 4pm till bedtime.
No doubt in my mind that it is the inflamed nerves in the neck and head that cause this burning sensation. I read that demylenation of the nerve sheath occurs w/neuro lyme and once the ketes are gone, it takes a long time for the nerves to repair themselves...but they will.
Glad to hear most of your smpts are gone. For me, the heat as well as headaches and eye/ear pain are still hanging on after 6 weeks of tmt. Again, I think this has less to do with active ketes than with damage to my trigeminal and other nerves.
Dr. p has me on doxy 300 and biaxin 1000. I take neurontin...300mg helps a bit with nerve pain.
Also, my new pcp is dr. K. I like her alot. Between the two I feel like I am in good hands.
Keep me posted! Dont' workout too hard if I gives you smpts... Kim
-------------------- We are spiritual beings on a human journey...
shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
The GOOD news is, you're getting better.
The proof is in the pudding. It must be working, because you are getting better.
You don't need fancy drug combos, because you are getting better.
Did I say, it's important to note that you're getting better?
Everyone reacts differently to treatment. One factor is how strong your own immune system is to help fight the bacteria. Another is how long you have been infected before treatment, how entrenched those little bugs are. Another is your genetic predisposition to certain reactions to the bacteria (such as arthritis).
I was rarely sick before Lyme, and rarely took medication for anything. I was also in good physical condition before Lyme. Dr. P told me that I would likely respond well to antibiotics, having always had a strong immune system. I did.
You might want to ask Dr. P if the fatigue and "hot face" you're still experiencing should be considered ongoing Lyme symptoms, or side effects of the antibiotic.
And remember, a lot of us on Lymenet have additional health problems, allergies to antibiotics, etc. Your mileage may vary.
Take care, Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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bettyg
Unregistered
posted
ALWAYS request a copy of EACH medical visit! I have a special calendar I wrote ALL my appts., xrays, blood work, etc. on.
. I note if he prescribed new meds & what they were.
. I show WHEN my notes were received from dr. after 2 wk. waiting period & then start calling until they mail them to me.
. I keep the drs. card w/name, address, phone no. on this calendar too. (This is NECESSARY if you file for SSDI, SS disability benefits since you have to list EVERY DR. YOU'VE SEEN & WHEN!)
Human being is right! ALWAYS have a prepared list to give your dr. & YOU KEEP ONE TOO..... ALWAYS MAKE SURE MOST IMPORTANT THING IS ON TOP!
Don't start with trivial stuff; you're limited for time so get straight to the point.
I also put my symptoms on there for EVERY thing I'm going to talk with my LLMD & PCP.
This way they can use it when they dictate and NOT FORGET to note important things they may have forgotten due to seeing so many patients.
YES, my face was red & burning at first. It was the 1st HERX I was experiencing. I wasn't in the sun, and kept covered up with hat, long sleeves, etc.
Doxy caused my EXTREMELY sensitive eyes to be 200% worse. I bought the NOIR, no infrared sunglasses, which I learned about on the marshallprotocol.com site, and about extreme skin sensitivities. www.noir.net or .com
If you order NOIR, mention you have lyme and marshall protocol, they will give you 20% discount! They have replaced my SCRATCHED LENSES & BROKEN BOW without additional charges. good luck to you.
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
DJ,
Before my llmd appt., I also write down things I want to discuss and issues I've had since the last visit.
I really depend on my Palm and keep all my notes there. I take my SO along with me to the appointment. I'm too Lymey to keep up with what the doc is saying and what I want to say.
I've found it helps having someone there who can keep things more straight than I. My SO also write everything down in a notebook I've had with me from the start.
I also track my symptoms on a daily basis, so I bring in those charts. There's a really good one at the Lyme Disease Assn of SE PA. (can't remember the web address).
Like you, DJ, I was treated for a rash with short term abx, only to have the symptoms come raging back. But with me, the bite was in 1996, and the symptoms didn't strike with full force until last year.
I also had horrible facial flushing. Horrible! I recently saw pictures of me taken at a party in 2003. I looked like I had some weird skin disease.
Anyway, that symptom gradually began to disappear during my abx treatment (probably around the 5th month). One day, I realized it wasn't happening any longer.
Of course, I've still got some of the other pesky things.
Hope this is helpful!
Andie
Posts: 2549 | From never never land | Registered: May 2005
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posted
Hey guys...Can't this face flushing and fatigue be from babesia??
Co-infection testing is no better than Lyme testing. I'd ask for a round of clindamycin/quinine or mepron/zith. The clindy is much cheaper and not as nasty!
If you herx, you'll know you're on to something.
I'm glad you're much better!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96227 | From Texas | Registered: Feb 2001
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mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
Yes, it could be Babs too. I had flushing and have tested + for lyme, bart, RMSF. I was treated for babs too.
Doxy + sun gave me severe pain. Tetra just sensitivity.
Posts: 1572 | From Pa | Registered: Jun 2001
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posted
WOW. thank you all so much, i swear since finding this site, i feel like i have so much support. You all are amazing. thaks for all your ideas, i too have wondered from day one about babs. I was suprised that doc p didnt even ponder this considering he knows so much on this issue. i have my follow up soon and i will definitely have more of a plan, at 10 dollars a minute you have too. thanks again, dj
-------------------- D.J. Lyme Posts: 69 | From shoreline CT | Registered: Dec 2005
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posted
i forgot to say thanks humanbeing, i am glad you are seeing good people, i too liked dr. K i just had issues with my treatment protocol with her, sometimes i would be asking her what alot after she said something cause of the accent.
SO i meant to ask everyone who reads this, based on what you read, what are some of your opinions on my treatment, how much longer, and what other meds do you thinks i should try, i know its just opinions so i wont hold you to anything, thanks again all.....
human being, i hear what you are saying about the ticks and the snow, i was happy for it as well, i just pulled a tick off my golden retrievers eye last night and it freaks me out to know those things are out, people here in ct all say they arent out in winter, YEAH RIGHT, now when i see a meadow or the woods i go wow think about how many ticks are out there......PATHETIC EH?
-------------------- D.J. Lyme Posts: 69 | From shoreline CT | Registered: Dec 2005
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Welcome. If this is treatment based on a tick bite last summer than I understand why Doc P wouldn't consider you a chronic Lyme person.
I flushed for a LONG time. Bit in 96 and severe relapse in 2004. On abx for over 1 yr now. 300mg doxy and 1 zithromax has relieved pain, numbness, forgetfulness, fatigue. But it has taken a long time. It sounds like your body is flushing with being on abx, then off , then the bacteria is in a limbo state.
When you are herxing, it's the same way. It can be one of the most confusing things you'll ever have to deal with besides trying to express to those you love what the hell it feels like physically and mentally!
I used to lay on the bed and just try to figure out why I was so sick and from which toxins were making me sicker... the lyme or all of the abx.?
My best source was my journal which I took with me to every appt so that I could refer to it. I was bit on the neck after abx treatment for one month and my chest would flush also. Felt like my temperature would rise, and then where the tick was would turn all red.
I got with the serious treatment after finding all of my symptoms here. There are so many you forget. write them down. Did you ever feel your skin hurt? Now that is weird crap. What about when your skin moves and creeps all by itself? Invasion of the body snatchers.
Been there. Hang in.
-------------------- Lymester Posts: 519 | From CT | Registered: Jun 2004
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
That's exactly the page I mentioned, Bluetick.
Thanks for finding the link!
Andie
Posts: 2549 | From never never land | Registered: May 2005
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mbroderick
Frequent Contributor (1K+ posts)
Member # 5220
posted
Thanks Andie for the chart idea. I just printed a few out and will start using them instead of the 'diary' that I've been keeping online. The charts may help boost my spirits if I see positive things happening (which I have yet to do).
Posts: 2097 | From PA | Registered: Jan 2004
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Hey, Marian!
I'm a big fan of the chart and have mine since May. I hit a point last month where I wasn't sure I was really making progress.
So I got out all the charts and laid them end to end.
Visually, it was clear that I've definitely been making steady (albeit slow) progress.
Hope they work out for you!
Andie
Posts: 2549 | From never never land | Registered: May 2005
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