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...
Posted by onbam (Member # 23758) on :
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.
Posted by Lymetoo (Member # 743) on :
Sure it can come back.. esp if not treated adequately. How long were you treated??
MOST ID drs do NOT treat Lyme disease long term, nor do they test and treat for all possible coinfections.
We can help you find a dr if you need one. (sounds like you do)
Suggest you don't go to your ID doc and instead find an LLMD. I hypothsize you were not treated adequately before. What was your treatment?
Posted by dmc (Member # 5102) on :
Download & Print out FREE green Lyme booklet from http://lymepa.org It is a great primer on Lyme & other Tick Borne diseases.
Hope this get better soon, but if it is a TBI (tick borne infection) it may take awhile to recover.
Don't get discouraged.
Posted by andyc210 (Member # 25204) on :
quote:Originally posted by Lymetoo: Sure it can come back.. esp if not treated adequately. How long were you treated??
MOST ID drs do NOT treat Lyme disease long term, nor do they test and treat for all possible coinfections.
We can help you find a dr if you need one. (sounds like you do)
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.
Posted by Tammy N. (Member # 26835) on :
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
Posted by Lymetoo (Member # 743) on :
Way under treated. Way sad.
Posted by 'Kete-tracker (Member # 17189) on :
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.
Posted by Keebler (Member # 12673) on :
- 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.