Lyme Disease Support Group

Hi everyone,

I already posted this on the "general" forum, but now I realize it might be more appropriate to put it here.

I live in Massachusetts and got bitten by a deer tick (48 hrs+ embedded) in 2003 but didn't have insurance at the time and so did not get tested/treated.

As the years went on, I would have phases of weird symptoms (not all the time -- maybe twice a year, for about a month at a time) -- lots of fatigue, dizziness and nausea, forgetting/transposing words, getting frequent strep and sinus infections, and having inexplicably frequent menstruation (every 15 days). In 2005 I got a western blot test for Lyme and was only 1 band positive, so was not advised to seek treatment.

This year, I was bitten by another deer tick (I'm a scientist and I work outside in deciduous forests), got a rash (not a bulls-eye, just a 5-cm round rash that lasted for 2 weeks!), went to the doctor, and tested (by titer) negative for Lyme. I know it can take a while for a test to come back positive. I didn't have any symptoms at the time, so they gave me 2 days worth of prophylactic doxy and I went on my way. After a few weeks, I started getting horrible migraines and nausea (it woke me up at night!), it got so I had only a few days between menstruation cycles, and I was tired all the time (I'm usually a very healthy person, and I was sleeping 12+ hours a night!). So I went back to the doctor and she gave me 21 days of Doxy (100mg 3x a day)... pre-emptive for Lyme, even though I had another titer that came back negative.

I felt HORRIBLE for the first few days on Doxy, even after I began taking it with food to assuage the nausea--but I was vomiting, had a fever, had a weird rushing in my ears, and worst of all, got a terrible eye infection (never had one of those before) that ended up rupturing my cornea. My doctor suggested I stop the drugs because I was reacting so negatively... saying I probably didn't have Lyme anyway, as my titer had come back negative. But I persisted with the drugs, and I'm glad I did because I started feeling GREAT by about week 2. By the end of the drug cycle, I felt like I had my life back--I wasn't tired, my headaches were gone, my eye had gone back to normal, I hadn't had my period since before the Doxy started.

Shortly after the Doxy ended (it ended 10 days ago)--so for about the past week--I've had the following occur: more migraines (4x out of the last 6 days--though not as strong as before), a recurrence of the eye infection (my eye doctor is shocked at this, as I was all healed), extreme fatigue (sleeping 12+ hours), and my period has started again (it's been a month since my last one, though, so hooray!).

I went to the doctor today to explain all this, and I had to see someone different because my doctor was out--and he was perplexed as to how the Doxy could have helped everything so much. And I was shocked to hear that he was unwilling to put me back on antibiotics because he said that even if the symptoms had been caused by Lyme, the Doxy should have knocked it out in 21 days, and it shouldn't be coming back. Anyway, he ordered a bunch of blood work (including another Lyme titer) and sent me home. He prescribed some migraine medicine and said he'd call early next week, after the test results came back and after he'd consulted with my doctor. I'm not at all convinced that she'll do anything, either.

Is there someone else I can go see? I have a job that requires a LOT of me, both physically and mentally, and I can't function with this fatigue and pain. I don't even know what I'm asking for... perhaps a list of Massachusetts/Connecticut/New Hampshire doctors who might be willing to see me and try to make me better? Or perhaps some non-antibiotic ideas (homeopathy, certain foods) that might help? I'm totally at my wit's end, and I want my life back. THANK YOU in advance for reading all this and thinking about it!

Hey there.

If you send a PM to Jaime, one of the group leaders, she will give you a list of doctors in your area.

You will find a community of folks here who have been through situations similar to yours, so don't feel alone.

Contact Jaime, and if you have any questions, throw them out here on the boards. You never know when someone has had an experience that can be helpful to you. If I can do anything to help, feel free to send me a PM as well.

It certainly sounds like you have Lyme disease, so I think your decision to find an LLMD is a good one.

Take care and be well.

Tom

do you know which band was pos ????????? some llmd have certain bands they look for /////////// it sounds like lyme to me

Yes, please find an LLMD (PM Jaime) or email lymedocs@aol.com or info@lyme.org for a list of LLMDs in your area. The symptoms sound like Lyme and short term antibiotics are not usually enough. The worsening of symptoms with Doxy was probably a "herx" effect...as the bacteria die off you feel worse for a while...actually a sign that the doxy is working.

Have you found a Lyme Literate in MA? I live in NJ and thinking about relocating to MA but have a child with chronic Lyme and afraid I won't be able to find a doctor who knows Lyme. My child is 22 but has been in treatment for 6.5 years.

Hi:

My 18-yr-old son has had a nearly constant headache for the past 5 years. We'ver gone through the gamut of sensible and nonsensical attempts to cure him, including nerve decompression surgery and, lately, Botox injections. Nothing has worked and I'm trying to figure out if Lyme might be a culprit.

Liam went to a summer camp in the California redwoods the summer before his headaches began. There would be a good possibility of getting a tick bite in this camp. None of us recall him having a rash, and if we don't wake him, he'll sleep til 1 pm. However, he often cannot get to sleep until very late at night. His neck is usually stiff and sore.

Does this sound like lyme to you guys?

And BTW, how do I PM Jamie?

I've been active is the NDPH group occasionally

Headaches, trouble sleeping, and sore neck are all symptoms of Lyme. After being in the redwoods it sounds like it could be a connection. Lyme tests are sooo inaccurate so do not rely on them. You must get him to a Lyme Literate Medical Doctor (LLMD). To PM Jaime you can go to the Lyme group and click on the Leaders tab across the top and you should find her there.

You can also email lymedocs@aol.com or info@lyme.org

Good luck...Darla

Less than 40% of Lyme Patients get a rash.

Lyme patients also tend to get their time clocks messed up. Up during the night and sleep all day.

My son has been sick for 7 years (diagnosed 2003) @ age 17 - the Lyme Literate Doctors think he may have had Lyme since he was 7.

I constantly had him tested because of leg pains, stomach pain etc., and the test always came back negative.

At age 17 a Lyme Literate doctor tested him for the co-infections and he came back positive. We didn't get a positive Lyme titer until he was on anti-biotice for 2 years.

My daughter also had Lyme and now has "Chronic Fatigue" and tested very high for Auto-Immune.

Please make sure you find a Lyme Literate Doctor and make sure they use the best Labs - Don't waste your money if they use LabCore or Quest.

The best out there are IGenex, StonyBrook and Medical Diagnostic Labs.

Iam not a doctor so please get information and guidance from a Lyme Literate Doctor.

Terry

Post edited by: TerrySymonds, at: 01/18/2010 06:49 AM

Liamsdad,

Headaches are also a symptom of Bartonella. I got them daily, sometimes so bad I would go to the emergency room for pain meds. Have him tested for co-infections.

Mbiojane,

You need to see an LLMD. As the other members have suggested you should PM Jaime or Cmany. You can find them on the leaders tab. Let them know where you live and how far you can travel.

As for the doctor telling you 21 days is enough... Thats crap and part of why we have Chronic Lyme (which by the way the IDSA doesnt believe exists).

As for blood work coming out neg...It doesnt surprise me.

My oldest daughter didnt test postivie for 15 years and she had the bulls eye

As for your rash... It was a bulls eye. not all have the defined center. If they had biopsied it they would have found Bb.

Check out the facts forum. There is lots on the testing and the inaccuracies, symptoms and lots more.