posted
I am recent recovery from a long and horrible last year... I was wondering if symptoms could come back or if its something else?
Last week I started feeling strange and I still do today. Ever since last week I've been having major sinus problems(so I think) and my head has been hurting alot. I've been getting this twitching near my knee that happens alot. Also I have been getting like little pinches in random parts of my hands, legs and feet.. Plus I sometimes don't feel like I have total control of my arms.. if that makes sense.. Its a very hard to describe type feeling..
I was thinking of calling my Infectious disease doc for a follow up.. I was just wondering though. could this really be a lyme affect? and now its infecting my brain even though I have been fine for a while?
I really hate how vague and uncomfortable this disease and talking to docs are... This has caused me to spend a lot of money and I thought I was through with this mess...
Posts: 11 | From Burlington County NJ | Registered: Apr 2010
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posted
My symptoms of lyme/babs came back after being gone for 8yrs.
A yr or so,ago, I had 3 sinus infections back to back.. felt like the bones in my face were broken. Then the fatique came back...I started sprialing downhill quickly.... then I got my butt back to a llmd and have been on antibiotics now for over a yr.
Stable now but not out of any woods. I have figured out that this will be my way of life actually. I can function but boy, 100% is probably never going to happen.
-------------------- Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again! Posts: 941 | From AZ-MT | Registered: Oct 2004
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I was infected in July or August 2009 and wasn't treated till December or January. My treatment was I think 1 or 2 months with doxycycline and my symptoms improved greatly(this was given by regular doctor). Months later I started having problems again but only slightly. I then was going to my Infectious disease doctor. They put me on it for another month. She said that there are bands. She said I was on the cusp. I am a 4.
I tried to seek doctors on here before. Someone sent me a list and every doctor listed are hours and hours away from me. I can't really travel too far and also most of them were $300 or more for every visit and I don't have that kinda of money.
My major concern is that I'm hoping its not doing anything to my brain or what not.
Posts: 11 | From Burlington County NJ | Registered: Apr 2010
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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
It does not sound like treatment was adequate. Very sad, and very common.
To find a local doc try lymediseaseassociation.org and go to their Doctor Referral section. Maybe someone will pop up who is closer to you.
Wishing you the best, Tammy
Posts: 2238 | From East Coast | Registered: Jul 2010
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
Quote: "...calling my Infectious disease doc for a follow up." Red flag. You were almost certainly under-treated. You NEED to see an LLMD.
It's a rare ID doc that treats past a fixed number of weeks. They don't even Consider 1 or 2 months of abx treatment beyond symptom resolution... so important to avoid relapse.
You NEED to find an LLMD. Now.
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Top two safety rules to remember:
� AVOID STEROIDS, even avoid steroid creams if suggested for the rash. Steroids can make infections works.
� LUMBAR PUNCTURE (Spinal Tap) is NOT a good test for lyme. Any doctor who suggests this to diagnose lyme is not a lyme literate MD (LLMD).
From the May 2007 issue of Clinical Advisor The Clinical Advisor is a monthly journal for nurse practitioners and physician assistants in primary care. Home page: www.clinicaladvisor.com
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR"
Discusses differences in the methods of the IDSA from those of ILADS
�� Nutritional Supplements in Disseminated Lyme Disease ��
J.J. Burrascano, Jr., MD (2008) - Four pages
==============================
It's very important to have this book as a reference tool for self-care and support measures. It answers so many questions in detail that is impossible here on the forum.
This book is based on interviews with 13 Lyme-Literate Health Care Practitioners. Each practitioner is given one chapter in which to share their healing strategies
California Lyme Disease Association (CALDA) is a non-profit corporation acting as the central voice for all tick-borne disease issues. An excellent website for anyone in any state.
PHA - Public Health Alert � an on-line newspaper devoted to education in the field of lyme and tick-borne disease.
===============================
STATE � Many states have their own Lyme disease association, network or group of a similar title. A Google search can often find that. Be sure they are ILADS-minded, though.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
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