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Need extended prescription for Doxy but Doctor won't give it to me... what are my options?

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Posted 2/28/2016 2:47 AM (GMT 0)
Hello,

I have been a lurker here for about a month now when I narrowed down my symptoms to Lyme disease. I never ended up getting a positive test (I got negative with some local lab test) but I had the following symptoms for a month that started suddenly on Jan 10:

(My symptom list as of Jan 30)
- pain started in testicles 3 weeks ago
- initially moved to my chest
- then moved to my neck
- feels like it moved around blood (I took a shower, and when the hot water hits my back the pain moved there)
- my knees really hurt sometimes, if I kneel on them they can be really painful
- my arm twitches like crazy some nights
- now it kind of moves randomly around body, some days I have it, some days I don't

I went to a general doctor and after they ruled out any STDs, HIV, or arthritis, they simply diagnosed me with pain due to anxiety - Lyme was out of the picture because I live in Texas and have not been up north for 6 or so months. I kept bringing up the possibility to my university doctor and she straight up laughed at me telling me it was impossible - which I thought was incredibly rude and unprofessional.

Then, in a stroke of luck, my roommate's Dad who is a Doctor agreed to prescribe me 3 weeks of Doxy, at 100mg twice a day. Though it was a bit less than I liked, given the downward spiral my symptoms were taking me, I took it as a life saver. I am currently on day 18 of this treatment, and I must say, other than the one awful headache I had on day 5, which I presume was a herx, I am feeling much better.

However, I am not completely better. I still have lingering headaches, neck pain, and very occasional twitches / pain elsewhere in my body, but they are 1/10 the intensity of the symptoms I had in January. I feel as though an extra month of doxy would be best, as I seem to be reacting quite okay to it, and everywhere I've read says that I should continue treatment until symptoms have been gone for a while.

However, my roommate's dad declined to extend my prescription, stating he would be at risk if he prescribed any more than the CDC recommended dose of 21 days for early Lyme disease. This is understandable from his perspective, but I am very worried what will happen if I can't get an extended prescription. I do have an appointment with an LLMD coming up but that is only in April, and I am worried my symptoms will go back into a downward spiral and a much more complicated scenario if I'm without the medication for so long.

Can anyone here advise what I should do? Are there any LLMDs I can call remotely to get an extended prescription? Or perhaps is there a better course of action? Thank you so much for anyone who took the time to read through my post.
Posted 2/28/2016 3:45 AM (GMT 0)
Gosh Patrick I am so very sorry. I know exactly how you feel. I got my first symptom in June and could not get in with a LLMD until August. It was horrible and I was so sick.

My lay person advice (I am not a doctor) is to do whatever you can to help your body. When you are tired, sleep. Eat healthy. Drink lots of water and if you can find good lemon juice put a squeeze of that in it.

I do not know of any doctor that will remotely help you. Most LLMD's are booked to the max and they charge up the kazoo.

Did you get a chance to read the first thread on this forum called New To Lyme?.......Start here! ????
That thread has a lot of information that will really be beneficial to you. I have been here for awhile and I still go visit that thread for information.

I am so glad you have a LLMD. That is where you start.

We are here and totally understand your plight. It stinks but there is hope.

Do not be afraid to ask any questions. We all did when we were new to this lyme stuff.
Posted 2/28/2016 4:16 AM (GMT 0)
Thank you so much for the timely response PeteZa. I'm really sorry you had to go through that, but it's comforting to know that other people have been through a similar situation and are OK.

Thank you also for the advice, I suppose that might be what's best for me to do for now. It kind of sucks I'll have to wait, but I'm glad I at least have an LLMD. I am making sure to drink a ton of lemon water already in hopes that I detox as much as possible while on Doxy.
Posted 2/28/2016 4:20 AM (GMT 0)
A couple of other things are to get a probiotic. The last thing you want is an antibiotic messing up your tummy.

And check out this site for other options on detoxing while you await your appointment -- www.tiredoflyme.com/detox-methods.html
Posted 2/28/2016 6:57 AM (GMT 0)
Patrick -Have your roommates dad take a look at this. It may help you get the extended rx you need.

www.poughkeepsiejournal.com/story/news/health/lyme-disease/2016/02/24/lyme-disease-treatments-guidelines-ngc/80805392/

He's going by the old guidelines which were just removed. The removal is a big victory.

You stated that you never got a positive test. Did you ever test positive or reactive in any Lyme specific bands?
You can check what the bands mean here lymetwistontherocks.blogspot.com/2011/01/western-blots-what-do-all-of-those-darn.html
My Internist told me I tested negative. I had his office fax me a copy of the test results. I tested positive in 3 Lyme specific bands including one that is California (where I live) specific.

If you were tested by a standard lab and not Igenex the likelihood of getting a positive test is slim.

There is Lyme in every single state so please don't accept the "There's no Lyme in Texas" comments. Even the CDC admits it's in every state. www.bayarealyme.org/blog/cdc-talk/

Worst case you can start on a low dose of herbs to keep the disease from getting worse between now and your appt. If you can't get the doxy extended with the info provided I would recommend posting a new thread asking what would be the best herb to take until your appt. You can get herbs in drop form. That form is easy and we can provide many websites that are priced right with free shipping. You start with 1 drop 2 times a day so a bottle should do you until your appointment. That's only $18-$24.
Posted 2/28/2016 4:42 PM (GMT 0)
Hi Patrick!
Welcome to our community! I'm so glad you found us.

The 'officials' don't believe that Lyme is in Arkansas either- even though I and others have CDC fully positive Western Blots. Denial is still strong in our states.

If you haven't ​yet​, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of important information, symptom lists, helpful links and pdf's, how to detox when one has these infections, information on probiotics and much more. And this is another good list of possible detoxing routines: www.tiredoflyme.com/detox-methods.html

You can use the information below to find a LLMD, or you can choose to use herbs/natural treatments to treat these infections. If you wish to see what herbal protocols there are, just ask! I don't want to push these on to you, but I healed a 40 yr old set of infections with herbs only, so they are effective.

If you choose to use an LLMD, they won't extend your prescription without seeing you first.

For information on finding a​n ILADS ​(International Lyme and Associated Diseases Society)​ trained​ Lyme Literate Medical Doctor(LLMD) in your area, 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 send me an email by clicking on my screen name or the small blue envelope under my screen name. I may have contact information for some LLMD's in your area as well.​ ​Please include your state (or province) and area that you would like to find a LLMD in and I will be happy to share the names I have.​


You can email the Tick-Borne Disease Alliance at [email protected]​ for LLMD referrals and you can go to ​tbdalliance.org​​ to learn more about these infections.


You can 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​​


ILADS has their own referral system as well:
ilads.org/ilads_media/physician-referral/


​ You will want to find an ILADS trained doctor, not one that has self proclaimed themselves as a LLMD or an ID Doc (Infectious Disease Doctor), as ID docs believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme. Go to the ILADS site to read the new (2014) Treatment guidelines to get you started on your healing journey:
www.ilads.org/lyme/treatment-guideline.php

Here is the actual link to the NGC (National Guideline Clearinghouse) showing the ILADS guidelines:
/www.guideline.gov/content.aspx?id=49320 This will show him that he may have a leg to stand on when trying to prescribe more than just the 2 weeks - but don't push him on this. He may have partners or others pushing him to stay away from this.
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