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Went months misdiagnosed

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Posted 3/21/2010 12:49 PM (GMT 0)
After being in horrible pain and many tests (except lymes) I had high CK levels for muscle breakdown.  Finally got to a rheumatologist.  Now I find out I have Lymes Disease.  Since I am hurting now, are the antibiotics going to work? I have been on doxycyline for two days and have been put on them for 3 weeks, when am I going to see any results? Is this permanant??? Please help!! Thanks!
Posted 3/21/2010 1:03 PM (GMT 0)

Helpless34 said...
After being in horrible pain and many tests (except lymes) I had high CK levels for muscle breakdown. Finally got to a rheumatologist. Now I find out I have Lymes Disease. Since I am hurting now, are the antibiotics going to work? I have been on doxycyline for two days and have been put on them for 3 weeks, when am I going to see any results? Is this permanant??? Please help!! Thanks!

How do you know you have lyme disease? Did you have a Western Blot test? You obviously aren't being seen by a Lyme Literate Medical Doctor (LLMD) or he/she would have put you on doxy for more than three weeks. Do you recall getting bit by a tick and if so how long ago? You need to be treated by an LLMD.

Three weeks of doxy isn't going to do anything for your lyme disease if that's really what you have. If you get immediate and appropriate treatment from a LLMD you'll be fine, eventually. But you will not get better from a rheumatologist who gives you only 3 weeks of doxy. Email me if you'd like to find a LLMD in your area.

Gary
Posted 3/21/2010 1:11 PM (GMT 0)
They ran a panel for Lymes and it came back positive.  They tested for everything under the sun and that is the only one that came back pos.  I had a strange bump back in september that wouldnt go away with bactrum (they thought it was a boyle) Then it suddenly disapeared after three weeks on its own. It never opened.  I saw a rheumatologist and she ran tests after my dr found out that my ck levels were high. So yes, its been confirmed.  Ever since then I have had muscle aches, and an over all sickly feeling (since october)

Please recomend me some people, their is one in my area that is not taking new patients.  I was given three weeks worth of meds, but I am to follow up with the rheumatologist in the next few weeks.  So she may give me more antibiotics, i dont know.  I live in the Baltimore area.

Thanks!

Posted 3/21/2010 1:15 PM (GMT 0)
Sorry to hear about your situation. I too went several months without being diagnosed and treated for lyme. Some people recover after the initial treatment of doxycyline and for others it takes a bit longer. You should try to find a LLMD (lyme literate medical doctor) in your area who can put you on the right path. What kind of symptoms are you experiencing?
Posted 3/21/2010 2:15 PM (GMT 0)
Hello! Thanks for responding... Here were my symptoms before i knew I had it:

Headaches, burning int the front of my throat and burning and tingling in my lower back.  Slowly the back pain creeped up to my mid back, then my hands started to hurt really bad, that crept up to my forearms.  My elbows and kness hurt really bad but it seemed like it moved from one place to another, but stayed mostly in my hands.  My theory is that the bump that had red all over it (i was told it was a boyle and put on bactrum in case of mrsa) Never popped and went away on its own after about three weeks was the tick bite.. That was the first place i had severe muscle pain.  My dr tested for everything, lupus, RA, MS, Vitamin Def, Glucose, Hepatitis, etc.  I also saw a neurolgist, and had many MRI's of the brain, neck, and lower back.  Also they checked for carpel tunnel by doing an xray on my hands.  Then I saw the rheumatolgist a week ago, and she ran all those tests and more (lymes finally) All was neg except for Lymes, that came back positive.  SO I am thinking that bump was the tick, you see we just went camping at the end of august. and that bump popped up during vacation. 

What were your symptoms?

Posted 3/21/2010 2:46 PM (GMT 0)
My initial symptoms were fever, chills, lower back pain and night sweats. I think I had a tick bite on the back of my head above my hair line. I never developed the classic bullseye rash. I had all kinds of tests and blood work done but the lyme test came back negative initially. My symptoms progressed similar to yours, radiating pain that would migrate up and down my spine and numbness started in arm pits and chest. The radiating back pain eventually settled in my lower back where it remains today. When this happened the numbness started radiating into my legs and feet. I now have numbness over most of my body including my head and eyes. Today my biggest issues are brain fog and numbness.

I had deteriated to the point where I didn't sleep for 10 days straight. I could not sit still even for sleep, the only releif I could get was from hot baths and contant movement, pacing. I ended up in the hospital for a week where my lyme tests came back very positive. After a number of rounds of antibiotics and continued testing, I am still looking for relief.

I hope that your treatments result in a speedy recovery.
Posted 3/21/2010 3:21 PM (GMT 0)
If you go to a llmd you will be tested for other tick borne infections (co-infections). Making sure they are treated properly will hasten your recovery from Lyme disease. Three weeks is not enough for you to be treated, most non-llmd's will not treat you properly -- it is more than worth it to go to an llmd.

To answer your original question, many of us went years mis-diagnosed. Everybody's disease progression and response to treatment is different, but their is no reason to think that you won't recovery full despite your delayed diagnosis.

Take care and put your mind to putting up a good fight!
Posted 3/21/2010 7:14 PM (GMT 0)
Hi Helpless,
Welcome to HW's Lyme forum!! I'm sorry you have a need for this forum, but I believe that this forum is really great for those newly diagnosed or suspecting any Tick-borne illness. A tidbit about me - I was infected with at least Rocky Mountain Spotted Fever (only mine was of the spotless variety) at the age of 5. At the age of 44 I was clinically dxed with Masters' Disease (another tick-born infection) & told I needed to assume that I was infected with all co-infections, & at the age of 45 was finally CDC positive for RMSF & Lyme (after 1 yr on strong abx). There is no way of telling when I was actually infected with any of these.

The absolute best thing you can do to help your recovery is to educate yourself (at least a bit). A great place to start is to read the thread "New to Lyme? Start here" that stays on the top of all the threads. There is a ton of good basic info there & you will come to understand what you are now battling. This is an aggressive infection & you will need to have a certain dosage of doxy, for a certain period of time, or your infection WILL become chronic & much harder to rid yourself of it.

So, my advice??? read, read, read!! You really do need to be your own health advocate!!
Posted 3/21/2010 7:44 PM (GMT 0)
Thanks so much guys! I am at my witts end! I didnt know that their were so many different types of lymes.  I am going to cancel my rhematolgist visit and request a referral for a specialist.. The one specialist in this area isnt taking new patients, so I am on the hunt.  If anyone knows of any in the Baltimore area, please let me know. 

The burning and pain, the headaches and brain fog, dizziness etc I hope can be treated.  My back feels like its on fire sometimes and my hands hurt terrible.  I worked out at the gym one day, I couldnt get off the bike, my thighs cramped horrible.  Should I still keep working out?

Gosh their are so many questions, but I am so glad I found this forum! I get so depressed sometimes i just want to cry!

 

Posted 3/21/2010 9:41 PM (GMT 0)
I think I would take it easy on the work outs for a while, not stopping all together, but think of some 'gentler' ways to get your exercise.
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