posted
I was diagnosed with Lyme Disease in August of 2013 after 3 weeks of fever, night sweats, general fatigue, headaches, and waking up with Bell's Palsy.
After being misdiagnosed three times, I was final diagnosed with through inflammation in a spinal tap and a positive Western Blot analysis (they did PCR also, but was negative).
They treated me with Ceftriaxone through a PICC line for 2.5 weeks, followed by a month of doxy. My Bell's palsy (on left side of my face) was treated via acupuncture and electrical stimulation.
I had severe headaches and fatigue for approximately 6 months after treatment. They also performed a follow-up spinal tap on me after 6 months and it came out clear. I began to feel better, but still had some fatigue (which I still have)
My question is that it has been over a year, and I am getting some soreness in my left shoulder and some tingling in my left arm/ left foot that is stemming down from the left side of my neck.
I get pretty severe knots on my left side and I am just more generally weaker on the left side. I am unsure if it is due to lyme or some other issue.
I have been to the chiropractor for neck adjustments and have had an MRI on my neck (it showed I have a bulging disc at C5/C6, but that would be unrelated to my issue).
I am a biker and a runner and my doctor thought it was due to a pinched nerve, but MRI did not show this..
Is it possible that it could still be due to lyme after over a year of treatment? Are there any suggestions on how to alleviate it?
quote:Originally posted by Farmgirl13: I was diagnosed with Lyme Disease in August of 2013 after 3 weeks of fever, night sweats, general fatigue, headaches, and waking up with Bell's Palsy. After being misdiagnosed three times, I was final diagnosed with through inflammation in a spinal tap and a positive Western Blot analysis (they did PCR also, but was negative). They treated me with Ceftriaxone through a PICC line for 2.5 weeks, followed by a month of doxy. My Bell's palsy (on left side of my face) was treated via acupuncture and electrical stimulation.
I had severe headaches and fatigue for approximately 6 months after treatment. They also performed a follow-up spinal tap on me after 6 months and it came out clear. I began to feel better, but still had some fatigue (which I still have)
My question is that it has been over a year, and I am getting some soreness in my left shoulder and some tingling in my left arm/ left foot that is stemming down from the left side of my neck. I get pretty severe knots on my left side and I am just more generally weaker on the left side. I am unsure if it is due to lyme or some other issue. I have been to the chiropractor for neck adjustments and have had an MRI on my neck (it showed I have a bulging disc at C5/C6, but that would be unrelated to my issue). I am a biker and a runner and my doctor thought it was due to a pinched nerve, but MRI did not show this.. Is it possible that it could still be due to lyme after over a year of treatment? Are there any suggestions on how to alleviate it?
Posts: 2 | From Rochester, ny | Registered: Nov 2014
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
Farmgirl-most here will say you were way undertreated. Most of us-those that didnt treat immediatly after infection-ended up with about three years treatment and then mauntence
You need to get to a goid lyme doc. They are called LLMDs. You can go to our seeking a doctor firum.for help
My son lives near you and he and his wife came down to westchester cty for tx and toik their son to ct
There may be a good doc near you now
Many will come aling to help. It does sound like you still have lyme
To answer your question, many of us after long term tx, and no signs of lyme...we still deal with stuff: simetimes bells doesnt goaway, often there are thyroid, adrenal, and arthritus sx
Others will add much more. You have come to the right place for help
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
Ps-sorry bout typos. I have bad hand arthritis
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
Hi - your symptoms sound like pretty typical Lyme symptoms. You can ask for Lyme doctor referrals in Seeking a Doctor - put NY in your heading.
Posts: 13116 | From San Francisco | Registered: May 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Farmgirl,
Good news: proper treatment now can help but it can be a long road. Still, first step: find a true lyme literate doctor (most are not, not at all).
Coinfections should also be addressed. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation for lyme, OTHER tick-borne diseases, and other chronic stealth infections - and all that goes along for the ride.
Medical "models" explained here, as to differences in the ISDA & ILADS models of assessment & treatment - and exactly why it is so very important to know the differences.
Why don't LLMD's take insurance??? ( some do ) -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You do not need another lyme test (and never needed the spinal tap - too bad they did that as it's usually terrible both in accuracy and what it puts the patient through.
Be sure you have your own personal copies of that Western Blot. OTHER tick borne disease (TBD) should be assessed, though. A good LLMD will know that. Some more basics, some just FYI even if you don't need another lyme test now - or if at any time a LLMD thinks you do:
If you want to go with conventional meds, you want to find an ILADS doctor as mentioned above.
If you want to try natural cures, you might like Stephen Buhner's book "Healing Lyme", which has information about herbal treatments.
You might also continue with a good chiropractor who maybe knows about Lyme and your acupuncture doc.
Spinal taps are not the best way to determine whether Lyme is in the system. Western Blots can be used to prove exposure, but they can't tell whether you're better. You really have to base it on symptoms once you're diagnosed.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
Here are other tests the doctor probably hasn't ran. I have 15 co-infections, most requiring different treatment from Lyme.
You didn't mention if you were under the care of a LLMD (=Lyme-literate doctor). I also didn't see you post a request in "Seeking a Doctor" so I am sending you some information.
You need to be evaluated and treated by a LLMD. Non LLMDs have no clue about this horrible disease or its complex treatment!
They are far and few between, unfortunately. You need to go where they are.
Most LLMDs do not accept insurance due to the politics surrounding this horrible disease. Read poster TF's explanation, "Why Lyme Doctors Don't Take Insurance":
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