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11/23/2008 05:17
CaseyLei13
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Good Morning from Connecticut the birth place of "Lyme's" Wonderful. Anyway my name is Casey and I contracted Lymes a few months ago. My feet/legs began to hurt after a surgery I had. It went undiagnosed for a month or so in which time my hands and arms began to hurt as well. I am now being treated for Lymes and hae been for about one month (Doxycycline) and I have been taking Celebrex for the joint pain for about 2 weeks. It doesnt help at all!! I am a hairdresser and jewelry maker and I can't do ANYTHING. I am angry at my Doc because I tried to express my concern and he blew me off like: "Keep taking the Celebrex!" Darnit I have been still nothing, my fiance is taking an emergency trip to Canada for a week, WHAT AM I GOING TO DO? Its only because of him I have been well fed and the chores are done. >sigh< any suggestions??
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11/23/2008 05:24
CaseyLei13
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Oh I forgot to say that my heart feels like its beating REALLY hard sometimes and my right pinky and ring finger keep going numb....
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11/23/2008 05:38
Julie4848
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Good Morning:

Have you tried Lyrica (Side effects can be tuff for two weeks)...It did help me, I stayed on it for 3 months then went off due to the weight gain...However my sister is still on it (8 months) no weight gain, she has shingles....

When I first got Lyme Jim was was on a trip for work for the 1st 1.5 weeks, it was awful but I had to do what I had to do...House did not get cleaned, (that can wait), I had to go part time at work due to being so awful sick....

Have him make you food that you can freeze and pop into the oven, I lived on soup for a month as I could not eat....Before he goes go and stock up on food you like so you will have it and won't have to go to the store....

After he got home, I was even sicker, thank god he got home when he did, I truly thought I was dying....Plus I was planning my wedding, etc, very hard time...But with proper treatment you will begin to feel better, it takes a lot of time....

Have you asked about the Pain patch, I have tried it and it does work at least for me, can't remember the name of it, it was after I broke my foot a few years back...

If you don't like your doctor, can you find another one??? Believe me don't stick with one that will not listen to you...I did that with my ID doctor, he did help in the beginning of my treatment (3 months) then after that he said I was "CURED"...Ya right...Then my family doctor took over and he has been wonderful and very understanding during this awful time in my life....

Jaime, Connie, and CLayton can help you find an LLMD if you want an LLMD, just PM them with where you live etc...

I wish you well and remember the Chores can wait...

Wishing you a speedy recovery

Julie

p.s. For the finger pain I applied ICE packs that seemed to help a lot...

Post edited by: Julie4848, at: 11/23/2008 05:39

Lyme will not win, we will and we WILL…

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11/23/2008 05:41
cave76

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Are you seeing a top tier LLMD? (I mean one who treats mostly by the ILADS guidelines or Burrascano's guidelines?

You haven't told us how much doxy you're taking---- Burrascano's Guidelines mention 400 mg of doxy a day for an 'average' adult, with no extenuating circumstances.

Anything under that amount is not treating. (By normal standards)

How long after your tick bite did you start antibiotics? If it wasn't IMMEDIATELY then you might be looking at months (sometimes years) of antibiotic treatment.

Don't get upset with me for presenting the facts.

Read Burrascano's Guidelines.

Read www.ilads. org

Read www.lymeinfo.net

And to touch on another subject:

Your doctor said:

****he blew me off like: "Keep taking the Celebrex!"****

Ask him what he thinks of the Black Box warning issued for Celebrex om 2005.

*****

Celebrex Gets Black Box Label

August 2, 2005

Celebrex, the only COX-2 painkiller still on the market in the U.S., will carry the Food and Drug Administration�s toughest warning. The FDA has announced the drug will carry a so-called �black box� on its label, warning consumers of increased cardiovascular risks.

Celebrex

• Celebrex May Disrupt Heart Rhythm

• Celebrex Gets Black Box Label

• FDA Blasts Ads For Celebrex, Bextra

• Can Pfizer Prevent Celebrex Ban?

• Pfizer Finds Health Risk With Celebrex

• Study Finds Celebrex Safer Than Vioxx

• Celebrex Implicated in 14 Canadian Deaths

---

Similar warnings have been mandated for ibuprofen and naproxen.

Celebrex has been under close scrutiny since late last year, [2005] when Merck withdrew another COX-2 drug, Vioxx from the market. The FDA then asked Pfizer to take similar action with its COX-2 drug, Bextra.

"We have worked closely with the FDA to ensure that Celebrex's label provides physicians and patients with the information they need to make the most appropriate and most informed treatment decisions," said Dr. Joseph Feczko, Pfizer's chief medical officer.

The new warning on Celebrex's label will recommend the drug be prescribed at the lowest dose and shortest time possible. Doctors are also being cautioned that Celebrex should not be used following heart bypass surgery.

While toughening the warning label, the FDA has approved the use of Celebrex for treatment of ankylosing spondylitis, a rare form of arthritis in the spine. It continues as an approved pain reliever for osteoarthritis and rheumatoid arthritis.

Pfizer says the recommended dose for Celebrex is 200 mg daily for osteoarthritis and 200 mg to 400 mg daily for adult rheumatoid arthritis. For the management of the signs and symptoms of ankylosing spondylitis, the recommended dose of Celebrex is 200 mg daily in single or divided twice per day doses.

In a way, the �black box� warning marks a victory for Pfizer�s strategy of keeping Celebrex on the market. The pharmaceutical company came under strong pressure late last year to withdraw the drug, as Merck had done with Vioxx. A Toronto newspaper published documents in which Canadian health officials blamed Celebrex for 14 deaths in Canada.

But Merck took a major financial hit when it withdrew Vioxx and Pfizer seemed determined to avoid that fate.

In December company executives strongly defended Celebrex, but pulled all radio and TV advertising for the drug.

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11/23/2008 07:09
CaseyLei13
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I am currently taking 100mg Doxycycline 2x per day, and the Celebrex 200mg 2x per day. Now mind you I am only 105lbs, 5'3'' I have always been on the thin-side but I lost about 10+lbs this year due to an ectopic that almost killed me, and pelvic congestion syndrome. Now lymes what cruddy luck. I started taking the doxy about one month after I was bitten. Truth is I never even found the tick, but noticed a red circular rash under my right breast, I had noticed it for weeks because I thought I had scratched myself and couldnt understand why it stayed... oh if it were only a scratch..

Thank you for your response Julie, I will try to put ice packs on my hands, and trust me I can let chores wait, it's just the basics that are hard right now feeding my cats, letting them out, feeding my parrot paying some attention, feeding myself washing myself, everything just hurts and I'm so tired, I hate to complain but you know the frozen food idea was really good, I have to eat food wth the doxy or I get sick. I haven't tried Lyrica but will check it out. I really want to call my Doc and just get some regular pain meds (5mg percocet with tylenol) I am sure just one of those would take care of my pain enough that I can just do what I need to do. Much more comfortable taking those than this bull spit celebrex that is dangerous and doesnt work.

Also, just realized that i've had the celebrex for 10 days now, still no effect, how should I say this to my doctor, what should be expected from a good doc?

Post edited by: CaseyLei13, at: 11/23/2008 07:46

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11/23/2008 08:35
cave76

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Read Dr. Burrascano's guidelines for Lyme and co-infections. He recommends 400 mg per day for an adult. (Although you're petite, you still fall into that category, I'm pretty sure.)

So, you're being undertreated for Lyme, according to Dr. B. And according to most llmds.

I'll hazard a guess that you aren't seeing an LLMD. Or you're seeing one who hasn't had much experience with Lyme.

Also, no mention of you having been tested for tick borne co-infections. IGeneX labs or MDL are considered the only ones that specialize in tick diseases.

One bite from one tick can give a person:

Lyme disease

HGE/anaplasmosis

Bartonella henselae

Babesia (three strains)

Please don't depend on the information you receive from ANY forum, where none of us can give medical advice.

All I can do is point a person to sites that are reliable. The rest is up to them.

Anything else can and might be considered 'just my opinion', although I've been on forums for more than a decade. Enough time to recognize when a person might be under-treated.

These are SERIOUS diseases and nothing to take lightly.

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11/23/2008 09:06
kittiekat
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I too get very sick when i take doxy, in fact i posted here about it last night and some very kind people advised me to be sure i take it with food, eat a little , take the doxy and eat some more...thats what i am doing

also to build your tummy up with good probiotics, dont be afraid to load up on the good stuff and protect ur gut!

I personally stay awaaaaay from Lyrica, it put on 15 pounds of fluid in 3 weeks and is a new drug...i personally am leary of new drugs, most drugs actually, if u google lyrica and weight gain u will see that allot of people have this problem and it didnt do anything for my pain but that is just me. I didnt have luck with any of the NSAIDS like celebrex ( also eats ur stomach so unless it gives if relief, i stay away but that is just me) back when this nightmare started. Like Julie so wisely posted, I also roast garlic in the oven( garlic once roasted with a bit of olive oil on a baking sheet in over is not offensive n fact it carmalises and becomes rather dolce and for me who used to hate garlic, i can not pop them like candy!...tummy good luck!, i make tea from a piece of ginger root as there are many ways to reduce inflammation, vitamin C is imparitive in this battle with Lyme.

I found something for the burning hands ( sometimes feels like someone has poured gasoline and lit me on fire) and u can pm me if u like. I am just full of suggestions that worked for me as I have been battling nearly 7 years but i am certainly not a doctor and we are all different.

Good luck, one day at a time

Kitty xo

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11/23/2008 10:21
Zennia
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Doryx (non-generic) doxycycline has helped me stomach the stuff. Much slower release -- non-capsule - tablets. Can only take 300 mgs per day!

That's all I could work up to. And I still get a tad queasy, but it's nothing like how sick I got with the capsules.

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11/23/2008 10:29
kittiekat
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good to know thanks. i am worried as my apt with LLMd is nottill ust before xmas and the stuff is literally gagging me.

i will look into the tabs and see what i find

thx

Kitty

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11/23/2008 11:01
Julie4848
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What I look for in a doctor: One that will listen with an open mind (mine does thank god), who understands the pain I was in, not telling me "Julie you are crazy" which he did not. One that will take my calls no matter how little my complaint is. One that will not blow me off after 30 days of abx (for lyme). My doctor worked hard and long with me and still does regarding my lyme treatment. At this time we both believe I am in remission, but I did call him a few weeks back because my neck was hurting so bad, he saw me ASAP, same day I called...However it was not from lyme but the way I sit at my computer chair is way to high and I have to keep looking up to type...Fixed that with a new chair, no more neck pain...

I never took the full amount (of doxy) like everyone will say you have to per the guild lines, my body would not/can not handle high amounts of abx's..., I would want to throw up, and since I don't have the ability to throw up I ended up in the ER having my stomach pumped so he had to lower the amount and then finally get off it due to a reaction....

I was on abx's from the beginning of August, break in September back on in October until end of Dec. That was it. But we caught my lyme very early within a few weeks after I removed my "Love bug" as I call the thing....

Stay strong, I know its hard to do...

Julie

Lyme will not win, we will and we WILL…

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