I suffered badly from Lyme about 2 years ago. I saw a LLMD in MA who started me on a large dose of tetracycline over a few months. I started feeling so much better I thought i was cured. I recently devleoped a stomach bug last week, started feeling better after a few days then suddenly one day got extremely dizzy and lightheaded and sensitive to light. I wound up in the ER and of course they blew off lyme returning and just said i was dehydrated and it was my sinuses. Three days later i still do not feel better. My pupils have been dilated since then. Lights just seem so bright. It feels eerily similar to my symptoms 2 years ago although i cannot remember if my pupils were dilated like this.
thoughts? I'm on day 4 and it hasn't gotten any better. I'm really nervous.
Posts: 34 | From Boston, MA | Registered: Mar 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Sorry to hear of this. Sadly, it never really left. There is no cure for lyme. Many achieve remission, sometimes long lasting.
In your case, you should have had longer treatment to begin with, treating at least a couple months PAST remission.
Combination treatment, with frequent rotation also works best. One single antibiotic often fails.
However, now that you already know the ropes and have posted in "Seeking a doctor" I hope you will find an ILADS-educated LLMD soon and get on track.
You should also be assessed for other tick-borne infections. Lyme rarely travels alone.
MAGNESIUM, CALCIUM and FISH OIL may help now to reduce the sensitivity to light. Rest well. Take care. Avoid aerobics. Avoid steroids. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You will not need another test for lyme as you had a positive IgM before. Band 23 is very specific, indeed, especially with your past and current symptoms and the fact that you were under-treated before.
Other tick-borne infections should be assessed by a LLMD.
I'm posting your test results to help others with their replies. -------------------
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.
Post in �Seeking a Doctor� forum -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about: ----------
MAKING THE MOST OF YOUR LLMD VISIT -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I know all this must be frightening, overwhelming and downright sad. However, if you can get to a good LLMD soon, you may find this will have you feeling better by spring or by summer.
You mention dizziness and sensory sensitivities. That can come from many things such as inflammation, toxicity caused by infection. In addition to MAGNESIUM, CALCIUM, FISH OIL . . .
GINGER CAPSULES may help the dizziness/vertigo. Other matters of inner ear and sensory challenges in this thread compiled specifically for LYME patients - lots of details about ears and what can help.
� of the way down page one, there are lots of LIVER SUPPORT LINKS as liver support is essential to helping the ears: ----------------
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Yes. My daughter was in tx for 1 1/2 years, and we thought she was "cured" after being totally asymptomatic for a year.
Even her LLMD said that he expected never to see her again.
Her symptoms returned after a year of great health. That was almost 2 years ago, and we've been fighting to get her healthy again, with no luck. We are both infected with LD, Bart. and Babesia.
Posts: 151 | From SW US | Registered: Feb 2009
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posted
thanks Keebler. Do you recommend going back to the same LLMD I went to before? i was symptom free for over a year so i never really followed up-probably my mistake
Posts: 34 | From Boston, MA | Registered: Mar 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Well, (assuming you followed doctor's orders exactly and took excellent care of yourself both during treatment and afterward) that doctor (I would not call him a LLMD at all) seems to have:
� provided incomplete treatment for lyme with monotherapy for too short of a time period
� did not educate you sufficiently so as to know how to manage a remission and that you always had to keep an eye on this
� apparently did not assess for coinfections
so I wonder how you could ever trust that doctor again. I would not be able to do that.
However, if you left treatment early against the doctor's recommendations, you might consider returning to this doctor. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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