posted
I was recently diagnosed with the LD (pos. ELISA and Western). I have only neuro symptoms that are getting worse- burning and shooting pain all over the body, numbness in the limbs, double vision, and extreme fatigue. My neurologist suggested to see an ID doc but also insists that I go to the ER (35yo, CTs, MRIs are perfect; blood work is fine, generally excellent health, no family diseases). Should I do that and (most likely) receive 3 weeks of antibiotics that will possibly help me or should I wait for the appointment with LLMD? I am trying to schedule one but the earliest appt offered thus far is only in January...I am not sure I will be able to wait that long...
Posts: 4 | From Cherry Hill, NJ | Registered: Nov 2009
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posted
The neurologist won't treat the lyme? I'm surprised by that. Do you have a primary physician?
Posts: 207 | From NH | Registered: Jul 2009
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I can not go against a doctors direct advise unless he is a known toad and a bafoon. That said...
If you go to the ER and do the IV Rocephin, it MIGHT help to curb the infection while you wait to see the LLMD. Many patients have done the IV's and have felt better ... then some relapse.
Since you have the early January appt with LLMD already set up... you might want to start some treatment now.
LLMD's are use to many of their patients being treated prior to coming there.
My opinion.... treat... get in good with the doc who is ordering the treatment.. and if you relapse you will be more "justified" in that docs eyes to go higher up the chain to get more help.
Done nicely this can work to your benefit... and you might feel better by the Christmas holidays!
Again, I am NOT a doctor and must say to do what YOUR doc tells you to do.
I do not remember been bitten by a tick (like many folks here). My husband was diagnosed with the LD and treated 3 years ago. My guess I also have it for awhile, maybe for 5 years since we moved to New Jersey...
I went to see a family doctor about 40 days ago. They said it could be LD or MS, asked to come back within 6 weeks. My husband was furious. We went to the ER because he wanted to exclude mini stroke. Few days later I returned to a family doctor (together with my angry husband). Finally got their attention - MRI and referral to a neurologist but still no lyme tests. The neurologist did a bunch of tests and finally sent for the lyme tests that came back positive. He does not want to treat the condition and sent to an ID specialist who is not on the LLDM list. This appointment is for December 8th. I inclined to get the treatment asap, probably will go to the ER before seeing the ``IDS''. Will definitely go to LLMD after all this..
Posts: 4 | From Cherry Hill, NJ | Registered: Nov 2009
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posted
Warning-long, but hopefully encouraging post ahead!
catscan,
I was in the same boat about 2 months into my diagnosis. Had been treated for Lyme and RMSF with Doxycycline, but 4-5 days after the last dose, started with the symptoms you describe. Miserable! Felt like I was gripping an electric fence and couldn't let go!
Called my non-LLMD ID doc-he said it didn't sound typical of Lyme! But...when my GP ruled out all other causes, and referred me back to the ID, THEN he changed his tune, and put me on 28 days of IV Rocephin.
I felt great on that med....but 2 days after the last dose, the symptoms returned, only not as severe. The ID said that Rocephin has neuroprotective properties, and so while it was treating my infection (neuroboreliosis), it made it feel better too...but that my symptoms would persist for a long time (6 months to 1 year) as the damage that was done to my nerve cells will take a long time to heal.
I had no choice but to deal with the pain/numbness/tingling until my appointment with a neurologist 3 weeks down the road...but by then, it had significantly decreased, and continues to do so.
My symptoms may or may not have been due to persistent infection....I am beginning to think that at least the post-Rocephin symptoms are just as I was told...damaged nerve cells trying to heal. I have had no further pharmaceutical Lyme treatment, and I am probably 85% now, 4 months post Rocephin treatment.
My point-those symptoms are hard to deal with....at one point, I felt like it would never end. But it did. Just wanted to tell you that....while it does take time, it happens.
The waiting, and the lack of a supportive MD who understands what is happening, is almost as bad as the symptom! Posts: 283 | From where the ticks are! | Registered: Oct 2009
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