HealingWell
Search Close Search
☰

Newly Diagnosed

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 12/11/2012 12:16 AM (GMT 0)
I was diagnosed on the 7th by my PCP. Tests came back negative, but I have been exhausted and having horrible muscle pain, to the extent I could barely get out of bed. Also, sore throat, fever, other blood work showed elevated sed and alt. The latter tests, recent trips to a highly tick infested area in MA and symptoms were the basis for her diagnosis. There was no evidence of a tick bite. The trips to MA have been ongoing for a couple years to visit family.

Over the course of the last year I have been diagnosed with IBS, and have had bouts of horrible abdominal pain. The fatigue comes and goes. I started 100 mg of doxy 2x, last Friday. Any thoughts as to how I should pursue this? Shouldn't I be feeling somewhat better with the antibiotics? I felt well enough to go to work this morning, and 7 hours later, I was exhausted.
Posted 12/11/2012 12:28 AM (GMT 0)
your not alone! Ive been years chasing symtoms, (always changing.) I personaly dont know of anyone thats had lyme for that long and had any luck with doxy. I too am still on them. 6mo.s I cant wait to get started on IV's.
Posted 12/11/2012 2:20 AM (GMT 0)
There is a lot of info. on Lyme and Treatment on the "new to Lyme thread".
How long have you been infected? Lyme, especially when one does not catch it right away, is difficult to treat and takes a long time.

Also, when initially starting treatment, symptoms usually worsen due to a process called herxing.

Doxy 200mg/day is not enough to kill the infection, it just keeps it from replicating. 400mg/day is recommended to kill the infection and is typically prescribed in combo. therapy to reach all forms of the infection (example-cyst form, spriochete, L-form). And there are coinfections that often come w/ Lyme that require different types of abx.

Lyme is a very complicated infection. You need to find a LLMD (Lyme Literate MD) that is knowledgeable in treating these infections in order to be properly treated. Also, false negatives are very common w/ Lyme testing.
Posted 12/11/2012 2:46 AM (GMT 0)
I've been reading everything I can find on the forums. I'm really not sure how long I've been infected, I've never had a rash, and don't have knowledge of a tick bite, and only various symptoms to go on, symptoms the doctor ran tests for, but they came up negative. I've also experienced nausea over the last year, very frequently. The Doxy 200mg/day is for 10 days only. I tried to advocate for other tests and the Dr. "assured" me the test was reliable, however I had already done some research so knew otherwise.

I'm searching for a LLMD at the moment.
Posted 12/11/2012 3:17 AM (GMT 0)
Even if your doctor is following the IDSA guidelines, 10 days at 200mg of doxy is literally the minimum recommended dose for a very recent infection (ie you still have a bullseye rash) with no evidence of arthritis. Given your elevated sed rate and pain, the IDSA guidelines clearly call for 28 days of treatment.

The IDSA guidelines are poor and your doctor isn't following them in the first place. I wouldn't expect much good to come of it. If you get any significant change in symptoms, either for the better or worse, it will be useful to keep track of if you actually get to a LLMD; this will be very useful information for them.
Posted 12/11/2012 9:40 PM (GMT 0)
Hi Chasing Rainbows and Ocala!
I'm so glad that you both found us! Welcome to our forum! I'm glad to hear that you've been doing some research type reading! Knowledge is power to heal with these infections!!

If you haven't yet, please do read through our "New to Lyme? Start here!" thread that sits at the top of our forum. It's packed full of important information, helpful links and pdf's, symptom lists (as Lyme rarely travels alone!!), and even a list of questions to ask any doc that you are seeking treatment from.

Please don't make the mistake of not getting proper treatment from your Primary care doc or an Infectious Disease doc! IDSA (Infectious Disease Society of America) is not the organization anyone should be following guidelines for treatment of tick-borne infections from. In a nut shell, and borrowed from this site: www.clinicaladvisor.com/controversy-continues-to-fuel-the-lyme-war/article/117160/#

"IDSA maintains that Lyme disease is relatively rare, overdiagnosed, difficult to contract, easy to diagnose through blood testing, and straightforward to treat (www.journals.uchicago.edu/CID/journal/issues/v43n9/40897/40897.html. Accessed April 6, 2007). ILADS, by contrast, asserts that the illness is much more common than reported, underdiagnosed, easier to contract than previously believed, difficult to diagnose through commercial blood tests, and difficult to treat, especially when treatment is delayed because of commonly encountered diagnostic difficulties (www.ilads.org /guidelines.html. Accessed April 6, 2007)"

As Mystery has said, 200 mgs of Doxy isn't enough to kill the bacteria - it's only bacteriostatic at that dose, meaning it will only stop the bacteria from replicating. Doses of 400 - 600 mgs a day of Doxy are required to actually kill the bacteria.

You will want to use a LLMD (Lyme Literate Medical Doctor) or a Holistic Practitioner. For information on finding a LLMD in your area, you can start a new thread titled something like:"Looking for LLMD in the _______ area." Although you will need to enable your email option in your profile in order to receive any recommendations, as we don't allow doctor's names and contact info to be posted on the forum for several reasons. You can enable your email option in your profile, under 'edit profile'. Be sure to click the submit button to actually save your preference.

You can also email our long time member, Dan's Mother at:[email protected]

You can also email Stephanie at: [email protected] You can also go to: www.turnthecorner.org/ if you want to learn a little bit more about Lyme Disease.

You can also go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74

You will want to find an ILADS (International Lyme And Associated Diseases Society) doctor. The ILADS site is another great place to read to get you started on your Lyme journey. www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html
Posted 12/12/2012 1:47 PM (GMT 0)
Thank you all for your informative and helpful responses. I am so overwhelmed at the moment. The doxy 100 mg 2x was prescribed for only 10 days, and right now I feel much worse. I am working only 3 days a week for the next few weeks, it seemed the day after work was so much more difficult, symptom-wise. With commute factored in, my days are generally 12-14 hours in a highly stressful environment and it was not helpful. Now I'm working/resting for the time being.
Posted 12/12/2012 4:35 PM (GMT 0)
If you haven't started detoxing yet, please do, Chasingrainbows. It will make a difference in how you feel. Just be sure to start off slowly- use only warm water and only stay in for 7 - 10 minutes to start. You can slowly build up the amount of time that you stay in the water and increase the temp of the water as your body adjusts to it.

Realize that the stress and the long days will work against you. I'm not trying to convince you to quit your job or anything, just be aware of these things and do all that you can to help your body overcome these extra stressors.
Posted 12/13/2012 2:07 PM (GMT 0)
Thank you, I will do that asap. And yes, the hours are working against me, even though I have cut back as much as possible.
✚ New Topic ✚ Reply