Well, I finished my month of Doxy. The only thing that had changed in that month was the swelling in my left elbow resolved...otherwise, I still feel lethargic, foggy and continue to have spasticity and nerve pain. I finished the Doxy last Saturday, saw Rheumatologist on Tuesday. I asked him about co-infections and he said he'd refer me to a ID doc if I started to show symptoms. Started to?!
Anyways, He plans on rechecking the WB in a month. (First test was IgM+ and + for #23/#41 but IGG -.) If it is IGG+ in a month, I will get IV Rochephin for 4 weeks. He told me, in the mean time, if I get any new or worsening swelling, call him. I really, really am hesitant to call him at all because I feel he isn't listening to me and his nurses are condescending and patronizing.
(A week after I started the Doxy, I developed petechiae and splinter hemorhages under my nails. I freaked and called the nurses, concerned about endocarditis, they poo-pooed me and I said "nevermind, I must be overreacting" because they made me feel stupid and they have treated me like a Psych patient since. BTW- I AM a nurse)
So.... today, two days after I last saw him, I am developing swelling and pain in my RIGHT elbow/shoulder. I never had any s/s of inflammation here, so it's a definite sign that the Lyme is still active.
My question- IS it worth it to call him now?
I kinda feel like waiting until Monday, by then it will be nice and swollen but also VERY painful but I don't want to think about this ALL weekend long and want to do something NOW!
I can't afford a LLMD at this moment. I have a new baby and have been off work because I am too sick.
I'm so frustrated! HELP!
Posts: 69 | From Wisconsin | Registered: Apr 2007
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
hey there-
sorry to hear about your quandry.
i know this is a difficult time, i am in the midst of it.
you might want to ask yourself though, what is more important right now.
if you simply have no means to see a llmd (by cash or credit) that is one thing
but if you can but just dont want to spend the $$ (i understand i spent 1500.00 on my first visit) i strongly advise you do.
do not wait until it gets out of control.
please act now if you can, there is no price for you own health.
best wishes and good luck
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Geeze! So sorry to hear you got ANOTHER tick bite!!!
I think you should head over to the nearest doctor.. even a walk in clinic... especially since you are a nurse. I think you should tell them that you were bitten by a tick and you don't feel good.
I think the nasty junk you are already getting from the dopey duck is only going to get worse. Actually I'll bet money on it.
Why wait for a month while the infection spreads more... then expect a test that is KNOWN and been PROVEN to miss up to 90 percent of those infected... to be your "savior".. and then..
Surprise! Be told you need to see the worst of the worst ducks in the world who.. IF it happens to be positive... HA!
They will tell you it is a false positive.. and you've been treated already and are cured.
If I had a nickle for everytime I've heard that story!!
May I suggest..
Pick up the pieces.. use your skills.. and go for it.
If this were your child you were trying to help.. you'd be a balistic BEAR or Tasmanian Devil by now.
You need to think that way for yourself too. YOU are that little one's protector.. and you are needed to be the best you can be.
Don't let the tick win!
And more important.. don't let the butt-heads win!
valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
Tori
I don't know what your dosage of doxy was. Should have been atleast 400 mg daily.
I hate this disease! But with that said the sooner you choose to see someone literate and recommended - the sooner you will improve. I traveled this past weekend with a nurse whose 4 children all have been diagnosed within the past year with lyme. (The mom herself was treated for 3 years with oral abx over ten years ago.) She herself has many symptoms. She admitted that she was not symptom-free when stopping and has just altered the quality of her life these years.
I don't know your history but I know that everyone I know has had to feel humiliated and crazy (numerous times) by mainstream neurologists, cardiologists and ID docs. And of course the primary physicians don't want to think outside the box on this one because they have the IDSA guidelines to control their lack of thinking.
I hope you will read the newbie links. I can tell you my one son's lyme literate primary care physician and his llmd both recommended he see an immunologist. I am thinking.....how come - we know it's the lyme/babs/bart..... but we went.
This doctor looked at my son and said: "I don't know anything about lyme but this disease scares me!"
The great thing was he welcomed the handouts that I brought for him (only going to give if he wasn't arrogant)
This disease is going to isolate you from folks.....but you are intelligent and you are going to be able to handle the doubting folks with the support of good folks here.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
I want to add, Tori, that I got treatment 6 months after I removed my tick and I was on abx for 15/16 months: the last two months I was symptom-free.
I am thrilled to say I have been symptom free now for 6 months. I continue with a good supplement protocol.....and a few herbs, too.
I wish I could say my sons were doing as well - but I did not have babesiosis like they have.
So my advice is make a call to the closest llmd. You are going to need cell wall drugs, cystic form drugs, intracellular drugs to get well.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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Tincup- I haven't been re-infected. I don't know when I was bitten. It could have been 5 years ago when I first started having neuropathy or it could have been 1 year ago when I exhibited 1st and 2nd stage ( during which I was treated with steroids for intractable migraine, Explains the - IGG, IMO.
My history is this- Having burning, numbness, tingling in various places six moths ago. Went to Neurologist, had EMG and MRI (both -) sent to Rheumatologist. Tested for Lymes because of inflammatory arthritis and fibromyalgia. He thinks WB was false positive but treats me with Doxy 200mg/day. (I brought up need for 400mg/day he says "I have NEVER prescribed 400mg/day. No one can handle that much!" )
Done with Doxy last Saturday. New symptoms today. I just called and told his nurse about the new symptoms. I'm sure they think I'm nuts.
I just wish they'd just do the IV Rocephin already!!! Posts: 69 | From Wisconsin | Registered: Apr 2007
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posted
djf2005- I really DON'T have the $$. I am seeing if the ducks can help until I save up for the initial consult fee- $400 Posts: 69 | From Wisconsin | Registered: Apr 2007
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posted
Tori, you're in a bad situation -- you can't work, so you don't have the money for an LLMD, but without an LLMD you can't get better so you can work.
I'd look to family, friends, parents, anyone who can help you pay for proper treatment. You need to see an LLMD who can make you well. You can worry about paying back whoever helped you once you are able to work again.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
You have received some very good advice. As someone who has been sick many years with this illness I can only say that I wish I had the same opportunity that you have right now. The longer you wait, the harder it will be.
Come up with the money to see an LLMD however you can but PLEASE make it a priority. You will not find a non LLMD who will know what to do and most beleive the IDSA rhetoric anyway and won't lift a finger to help. They'll be happy to offer copious drugs (but not drugs to get rid of the infection), all the while the infections are ravaging your body.
You need an LLMD for many reasons but one very important reason is that you need to ensure that you are treated for co-infections. A huge percentage of lyme patients have co-infections and they need to be diagnosed clinically since the tests are not reliable. If you have babs, you won't be able to get rid of lyme until that is treated. Without the proper help, you can spend years of unimaginable misery, stumbling around trying to figure out what is wrong.
As I'm sure you have gleaned from this forum, this is a very complex illness and requires a doctor who understands how to treat it. There are many pitfalls that ducks simply don't know anything about and don't want to know about.
I can't stress enough the importance of getting the right help ASAP.
Edited to add: You and sixgoofykids posted while I was writing my post. I agree with sixgoofykids, get the money however you can.
Wishing you the best, Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Tori,
i think TinCup was telling you to tell the story that you had a new tick bite.
A little white lie so to speak to get what you need as a bandaid until you can get the real dressing.
Hope I got that right.
You need to take care of yourself.
For the baby, and for you.
Congrats by the way. You must really be exhausted.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
The duck said "Keep taking the Piroxicam (NSAID) and we'll see what the labs say in a month." In a month!? I am here crying out of pain and frustration...a month?! Nothing for pain now?! I am calling my GP in the AM and telling him what is going on. He will be furious that the Rheumatologist isn't even giving me anything for pain. My entire right arm is swollen from the elbow down!!!
The thing is they use the Epic System here. My hospital has direct access to my full medical chart and history. They will pull that up, see that I have called the doc, see his response and guess what I am up to.
I so appreciate all of your advice and guidance......I feel so lonely and helpless about all of this.
I can't type much more, my arm is cramping.
Thank you all... Posts: 69 | From Wisconsin | Registered: Apr 2007
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Just Julie
Frequent Contributor (1K+ posts)
Member # 1119
posted
Tori, I am so so sorry. I have been up against this wall, and it is a very frightening place to be.
I say, damn American medical system. Damn them!
-------------------- Julie Posts: 1027 | From Northern CA | Registered: May 2001
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Ditto, Just Julie - from another Julie!
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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Started to?!
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I just called and told his nurse about the new symptoms. I'm sure they think I'm nuts. ![[Mad]](mad.gif)
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