New here- many questions

[lilyloo]

Hi all,

I'm new here, just diagnosed with Lyme today. I kind of don't believe it though, just because I've read about other things that can cause a false positive test, and I do have one of those things. Also I don't trust my lab b/c they said my mono test was negative, but I've had mono before so I know it should have been positive....

migrating, intermittent pains all over my body, my joints, muscle, abdomen, CHEST!!, head, everywhere. sometimes aches, sometimes burning, sometimes tingling, sometimes cramping. there is no pattern to these random sensations.

Also waves of dizziness accompanied by nausea
parasthesias
feelings of weakness in my hands, but no actual muscle weakness.
fatigue
stiff toe
some back pain (I think i actually pulled a muscle- may be unrelated)

These feelings began in earnest about 3 weeks ago. As my MD pointed out, there are no ticks in NY in January. I do remember having been bitten in August, but I felt the tick and pulled it right out.

Today my doctor started me on amoxicillin twice daily for 3 weeks. I was breastfeeding but stopped immediately today. My baby is 11 months. I'm going to ask the ped to test her for Lyme too.

Does this all make sense? Does it really sound like I have Lyme? What are the chances that it will actually resolve with the antibiotics my MD is prescribing?

should I have an MRI to look for lesions? does it sound like it's affected my brain?

[lilyloo]

Carrie- I'm so glad that you're feeling better! That gives me hope.

I went to an LLMD today and do feel better about some of the answers I've received, most importantly that I will be able to get rid of the Lyme and have another baby some day. I'm 31 and only have one, and I'd really like her to have a sibling.

I wanted to know how true that is. Has anyone actually heard of people being cured of this chronic lyme? How long does it take? I so badly want another baby but I couldn't bear to have a child and risk Lyme transmission in-utero.

Thanks for the support ladies!  

[JackieCalifornia]

Lilyloo

Sorry you're feeling rotten -- but it's part of getting well.  As Carrie says, it's a 'herx', or die off reaction in your body when the antibiotics are killing the bacteria, which then as they disintegrate leave behind trash that irritates your body.  The reaction will be over in a day or so, and then tends to happen again periodically, like weekly or biweekly, depends on the person and which infections you have.  If you want to look it up, the formal name is 'Jarisch-Herxheimer Reaction'.  Think of it as having to clean up the house after a wild party.

Sometimes the meds kill off too aggressively, and your doctor should hear if your Herx is too much for you to handle.  The usual remedy is to back off on the meds dose, or to change meds, but your DOC should always be the one to make that call, it's not a do-it-yourself decision.

Take care --

and PS -- Carrie, glad you're feeling better!

[carrie235]

Hi Lily,

I was just diagnosed with Lyme last month.  Nearly everyone of your symptoms sounded like the same exact symptoms I was having.  My symptoms started right after having had my gallbladder removed.  My immune system was keeping the lyme in-check but the stress and trauma of having my gallbladder removed, caused it to become activated I guess.

Anyway, I'm just a little over four weeks into my treatment, and I feel AMAZING.  I just posted in the MS forum (because that's what I thought I had for a year and was involved in that forum) that all my symptoms are gone.   I'm sure I'll have some flairs because from what I understand, Lyme goes through life cycles.

I like you started having doubts that lyme could be the culprit, but now....there is no question in my mind.  I am so freaking happy now.  I've spent the last year of my life being miserable and have seen sooooo many doctors and had sooooo many tests.  I also have 20 lesions on my brain, so i believe that I've had lyme for many many years.  I know for certain I was bitten by a tick (buried in my belly button for most likely a few days) back when I was 13 or 14 and I'm 48 now (will be 49 in a few weeks...Yikes!).

Anyway, believe it, get on treatment and you WILL feel better.  And, like Jackie said, find an LLMD to treat you.  Had I done that a year ago, I could have saved myself (and my poor family) a lot of grief!!

Oh, and regarding your last post, I felt horrible right after starting treatment too (by the way which is amoxicillin and biaxin for now).  That is your body herxing I think (I'm still pretty new to this) and I felt horrible off and on for a while.  Did a lot of sleeping because I was so fatigued.  But as time is passing, I'm feeling better and better.

[lilyloo]

Thanks for the advice. I started the amoxicillin yesterday, and today I feel significantly worse. I woke up with my entire body stiff, my hands were weak and i had difficulty combing my hair. My strength has returned to my hands and my limbs started moving fine, but now I feel flu-ish. What the hell is going on? My husband said I looked "wide-eyed and terrified" when I first woke up.

Thanks for your advice

[JackieCalifornia]

About your doc's comment that there are no ticks in NY in January.  What, the doc thinks the ticks all go to Florida till spring?  No, they live on furry creatures, including cats and dogs, all winter long.  And you could have been bitten in summer but your immune system suppressed the symptoms until you got run down with some other ailment like the flu.  Also, when you were pregnant, your body is on high alert to keep you well, so it may have been suppressing symptoms until your baby was born.

You may indeed have Lyme and/or other diseases carried by the same ticks.  My best advice (and I'm not medically trained) would be to find a Lyme specialist for testing and evaluation of you and your baby.  Three weeks of amoxicillin and no other evaluation for coinfections is almost certainly NOT what a Lyme specialist would do.  If you need help finding a Lyme doc (casually called by patients Lyme-literate MDs, or LLMDs), let us know.

In the meantime, try not to worry.  Take care --