posted
I was hoping to get some medical advice. I have had muscle twitches in legs and arms for about 2 years and was told it was bfs. My health seemed good until I got bite by a tick.
The problem is I can't get a positive lyme test and was wondering if I might have a coinfection (my drs wont test me for this.
After I got but by the tick I had lots of pressure in both my feet, finger feel arthritic, upper back pain along the spine, involuntary joint movements, tingling in my feet and just didn't feel right. I was given 28 of doxy and felt a lot better but my symptoms have come back and are a lot worse now.
I have fasiculations in my hands and feet, cramps in my ankles and legs, chest pain, muscle loss especially in my left foot, cold feet, tingling feet, tight leg muscles and stabbing ankle pains.
Sometimes my symptoms flare up really bad then they return to a much slow rate. I feel like I'm slowly going down the tube and would really appreciate any feedback.
I have tested on elisa, igg, igm and all negative. I also had a clean emg/nvc, normal kidney iunction, normal liver function, normal white bllood cells, normal esr, normal glucose, normal thyroid, no rhuamtory arthritis, normal esr, normal foliate.
I also had a normal ekg back in febuary when i had chest pains but they have come back.
................................................
Breaking up the text for easier reading for many here -
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Dale, welcome to Lymenet!
It sounds very much like lyme. You need to find a lyme literate MD (LLMD). You can go to SEEKING A DR, or to www.lymediseaseassociation.org.
Look for a doc who is ILADS affiliated (International Lyme and Associated Diseases Society). ILADS docs are cutting edge when it comes to lyme (no one else will do, not even an ID doc). Call a LLMD fast and ask to get on their cancellation list, that way you wont have to wait a long time to see them.
The tests are seriously flawed for several reasons. The correct diagnosis for lyme is a clinical one (symptoms), so don't go by your test.
28 days of doxy won't cut it. You need someone who knows this disease. Other docs think they are experts, but unless they are affiliated with ILADS, they're clueless. They simply don't know what they don't know.
There is a really good book called: Cure Unknown (Weintraub) worth reading. It will explain so much.
Also, you should watch this award winning documentary below (Under Our Skin). Keep in mind that lyme does different things to everyone. We are all different, so what happened to these people won't necessarily happen to you.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
By the way, lyme makes it difficult for people to read single spacing, so we break things up here when we respond so everyone can read it. Also, I wouldn't use a real name either. If that's your real name, you can edit your profile to change it.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Dale,
Absolutely, you need to find an ILADS educated lyme literate doctor. And you need to also be assessed for other tick borne infections. Sorry to hear of your experience . . . and so many others tell the same.
Welcome. Yet, it would be best for you to remove your full name from your signature. And, even with the real initial of your last name, I would not put my town or even state on line either.
This is so that insurance companies can't trace you. Rejection of lyme treatment is hard enough. Sometimes, we can fly under the radar to some degree (maybe) but you can sure bet that they are on the look out for ways to cut us out completely.
And, for anyone here not belonging . . . some who want to steal drugs do browse medical discussion boards. If you give them your name and city, you've given them your address, your phone, etc.
And, just for your own privacy. Work, etc. more detail here:
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.
How just doxycycline (or other antibiotics, alone) can cause chronic lyme:
Topic: replication within cystic forms of lyme -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Dale, as Catgirl mentions above, many hear have trouble reading more than about 3-4 finished lines in a paragraph. That's about 5-6 lines in the edit mode if on a computer. You can go back and forth as you compose, see it on screen and then just hit the little paper & pencil icon to go back and alter anything you like.
And, when listing lots of things, it often helps to have some more breathing room for the eyes to sort it all out in the brain, too. Normally, single spacing is also hard in the eyes yet with lists as I've grouped here, many things will get lost if bunched together. -------------------------------------
Backing up, breaking up your post so more can read it:
Dale writes:
I was hoping to get some medical advice.
I have had muscle twitches in legs and arms for about 2 years and was told it was bfs.
My health seemed good until I got bite by a tick.
The problem is I can't get a positive lyme test and was wondering if I might have a coinfection (my drs wont test me for this.
After I got but by the tick I had lots of pressure in both my feet, finger feel arthritic, upper back pain along the spine, involuntary joint movements, tingling in my feet and just didn't feel right.
I was given 28 of doxy and felt a lot better but my symptoms have come back and are a lot worse now.
I have fasiculations in my hands and feet, cramps in my ankles and legs, chest pain, muscle loss especially in my left foot, cold feet, tingling feet, tight leg muscles and stabbing ankle pains.
Sometimes my symptoms flare up really bad then they return to a much slow rate. I feel like I'm slowly going down the tube and would really appreciate any feedback.
I have tested on elisa, igg, igm and all negative.
I also had a clean emg/nvc, normal kidney iunction, normal liver function,
normal white bllood cells, normal esr, normal glucose, normal thyroid,
no rhuamtory arthritis, normal esr, normal foliate.
I also had a normal ekg back in febuary when i had chest pains but they have come back.
[end post by Dale, New England] -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- What can help while you sort out a LL doctor: it is not antimicrobial yet it can help support liver to lessen toxicity from lyme & also help ease muscle twitching.
Topic: MAGNESIUM - LINKS sets -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Oh, about your spine. Lyme changes so much. With lyme, the spine can be very affected. Don't let anyone suddenly twist it if you get any kind of body work. Never, ever let anyone suddenly twist neck or spine. And avoid pressure, too, such as head stands, etc. ;-)
A good LL doctor can direct you to lyme aware body work professionals. UPLEDGER institute is gentle yet if lyme is the reason, it's best to have lyme, et.al. addresses first.
Also avoid any suggestion of lumbar puncture / spinal tap . . . avoid steroids, or other immune suppression.
I know this is a lot but I think you are on the right track. Best of luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Hi Dale - to get LLMD referrals, you need to make a new thread in Seeking A Doctor with a heading that says what state or area you want referrals for. In the text you can go into more detail if you'd like.
Posts: 13117 | From San Francisco | Registered: May 2006
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