posted
Been sick for 4-5 years. Just seeing if anyone else agrees this could be chronic lyme that wasn't treated properly in 2008 when I was give the usual 2 week doxy prescription. I have the symptoms of Chronic Fatigue, joint pain, muscle weakness, cloudy vision, shooting pains all over body, constant muscle twitching, dark circles around eyes, red eyes, slow to health skin, loss of feeling (slight numbness) in neck,toes,arms,right leg, chin, constant anxiety about my physical health.
Also would the slight loss of feeling numbness indicate neuro lyme to anyone? Thanks all!
Posts: 8 | From MN | Registered: Aug 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Welcome, but sorry for why you are here.
Yes, the symptoms you describe could be neuroborreliois (neuro-lyme). Highly likely, I would say as you were
previously diagnosed with lyme &
did not receive adequate treatment in terms of combination therapy or the time for that to run.
My guess is that you were not also assessed for other tick-born infections (including parasites).
The link below has symptoms list but with what you say, it would be best to see what we call a LLMD (lyme literate MD). That is the term patients have given to those who have become the real experts.
I have one very important piece of advice if you ever mention all this to a regular doctor:
NEVER, EVER tell them that you have "constant anxiety about (your) physical health."
Now, I know what you mean as, holy smokes, with these kinds of symptoms, who would not have deep concern. But most regular doctors suggest that anxiety is all psychological and to just "get a life and stop thinking about your body."
So, it's just really important to just not "go there" with those who don't know that
lyme can cause increased physical and neuro anxiety due partly to the toxicity of lyme but also how it clobbers our endocrine system that is supposed to help us manage stress. When that goes kaput, so do we. But most doctors are clueless about that.
(What ILADS is) . . . WHY you need an ILADS-educated, Lyme Literate Doctor - starting with assessment / evaluation. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Glad to see that you have posted in seeking a doctor but sad that you don't seem to have found one in
Central MN
and have expanded your search all around to surrounding states. This group should help you connect with a LLMD right in your state:
Just to be sure you know this as the Mayo Clinic is in your backyard: AVOID MAYO they are very ignorant about lyme and other tick-borne infections. -
[ 08-21-2012, 03:50 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Bell's Palsy and steroid Rx (3 years ago) was mentioned in a previous post of yours.
I'm so sorry to hear about both of those. Bell's Palsy certain is a major lyme symptom.
That you said you got the typical treatment: doxy, steroids, anti-virals . . .
I just want to be sure that you know steroids can make lyme MUCH worse. You may or may not be aware of that and it's just so important that I didn't want to let that slip by.
I assume the steroids treatment was over long ago (?) but be sure to post this to your desktop research file as a reminder or as a resource if some other non-LL doctor ever suggests.
Unless you are on steroids, now, I would not read this. Just save it for reference. It could make you a bit sad (as it has for me and many others who got them and got worse).
DO tell the LLMD at your first appointment. Try to list the exact Rx, the dose and length of time. This will help her or him to better individualize your treatment plan, regardless of just what is going on.
After steroids, treatment protocols can require some specific attention. But, you still have every chance to get better.
posted
Ya that was my post. My thing with the steroids is they were given to me to strengthen the nerve that had made my face motionless. When I went to the most helpful LLMD in Wisc (has sense had medical license suspended) he also gave me the presnidone (steroid) even though I told him it was not the same sensation or lack of motion that I had with the bell's palsy. Yes I was given the Presnidone in 08 for 2 weeks and again 2 summers ago when I went to see a LLMD for another 2 weeks. But thank you for the posts and yes I'm looking to find a LLMD to get back ASAP!
Posts: 8 | From MN | Registered: Aug 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- When required for a life-threatening or otherwise serious reason and IF ALONG WITH the appropriate treatment for lyme, steroids can be of service.
Even if not the same as with Bell's Palsy, teh nerve involvement likely needed serious attention from a couple different fronts.
The key is WITH appropriate treatment for lyme. Antibiotics started BEFORE (if possible) and a a high enough dose, usually a combination of antibiotics, not just doxy.
If an ILADS-educated LLMD guides you, you are in better hands about that.
So, then, you know about the politics then & have been to a LLMD to have a sense of the difference. It's very unfortunate and a huge loss about the politics of it all taking some LLMD out of practice.
Good luck to you.
I think there are also some ILADS-educated LL NDs in MN. A ND is a naturopathic doctor. Do connect with your state group, though. There's a good LLMD in Minneapolis and I think that is where there is also a LL ND. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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