LymeNet Flash: Any insight would be greatly appreciated

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Posted by barbaro429 (Member # 33561) on :

My husband was bit by a tick in March/April of this year. No bullseye. Started having migrating joint pain maybe 6 weeks after the bite. Finally went to the doctor (General Practitioner), was tested for lyme. Results were negative. Pain started getting worse. Ended up in the E-R because he couldn't walk. Was put on doxy. [bonk]

On doxy for about 10 days. Woke up in the middle of the night, sweating, dizzy, and vomited--herxing? Stopped the doxy for 2 days. Back to Dr., who said "I don't know what you have". Put him on amoxicillin.
Stayed on amoxiciliin for 4 weeks. Started feeling alot better over the last week or so. Stopped amoxicillin 2 days ago. Today he has joint pain again. Not nearly as bad as in the past.

Does he need a longer treatment or different antiobiotics? We're seeing an infectious disease doc in October, who ordered a bunch of blood tests, including western blot, and co-infection.
Still planning on seeing an LLMD, but her office never called me back after I left a message requesting an appointment.

Feeling very frustrated.

Any suggestions?

Posted by Susie R (Member # 30780) on :

I would suggest making a list of nearby LLMDs and calling all of them and getting the earliest possible appointment. Ask to be put on cancellation lists. Then go to the first available of any recommended MD. (You can post in seeking a doctor for NY/NJ docs.)

If hubby's symptoms came back, he's still infected and needs more abx. The good news is, this is still relatively early! Don't fool around, though, get to a good doc ASAP.

Susie

Posted by barbaro429 (Member # 33561) on :

Thanks Susie!! Great advice, which I will follow!

Posted by Tincup (Member # 5829) on :

Yes, Susie, great advise! Rock and roll!

In the meantime Barb... did he take the doxy on an empty stomach? That can cause the symptoms you described and they can be wicked. Just a though.

Keep in mind... the tests for Lyme disease... on a GOOD day... will miss 75% of those who are infected, according to Hopkins study.

Additionally, a couple of things you mentioned may make the Lyme test results even more likely to miss the infection.

1. You are going to an ID doctor. Often that is the beginning of a disaster in itself.

[toilet]

2. They ordered the Lyme tests for him after two types of antibiotics were already taken. That normally will negatively affect the test results, rendering them next to useless.

I am not a doctor, but if you can get to another doc or get a refill on the Amoxy from current doc until the date of the ID doc appointment... if you keep it... then that might be a consideration.

Here is a site where you can print out the treatment recommendations for someone who was recently bitten.

www.TreatTheBite.com

You can take it to a doc showing the recommendations there by a doctor, rather than trying to convince them yourself.

Good luck!!!

[Big Grin]

Posted by Lymetoo (Member # 743) on :

Did he take the doxy in the MIDDLE of a meal? If not, that is likely why he was vomiting. It's very hard on the stomach.

Get a test thru Igenex Lab .. www.igenex.com

Test #188 and 189

most inf disease drs will not be willing to order this test

Posted by Tincup (Member # 5829) on :

BTW- Might want to give the docs offices some breathing room. Especially considering there have been many people affected by earthquakes, hurricanes, tornadoes and massive flooding in the northeast.

Posted by Tincup (Member # 5829) on :

Hey TuTu...

After all these years and all these posts we are starting to think alike! And post at the same time too!

[Eek!]

Posted by barbaro429 (Member # 33561) on :

Thank you both tincup and tutu---it seems I can never read too much or get too much advice about this disease. The more informed, the better!!

Posted by barbaro429 (Member # 33561) on :

And I'm not sure if he took the doxy on an empty stomach, but probably wasn't in the middle of a meal..again thanks for the tip--the doctor's don't always seems to remember to tell the patient the little details....

Posted by daisyrlb (Member # 15686) on :

So sorry your husband was bit by a tick.

That was an honest doctor who admitted, "I don't know what you have".

Time is of the essence! I'm sure reading the posts on Lymenet...you are probably figuring that out already.

A wise person would not generally put off being treated for cancer and would surely go to a cancer specialist. Lyme Disease...Ditto!

May you and your husband move forward as quickly as possible to see that he gets into a Lyme Literate Doctor, LLMD/LLND and be treated by a doctor who treats Lyme Disease and Co-infections on a regular basis.

You'll be glad you did.