Recently diagnosed with lyme after 4 years of severe symptoms. Will 200mg of Doxy a day be enough?

I was recently diagnosed with lyme disease after 4 years of trying to find the cause of my symptoms. Symptoms have gotten increasing worse over time and include low grade fever, extreme fatigue, painful joints, swollen painful lymph nodes, muscle spasms, brain fog, loss of coordination ,dry blurry heavy feeling eyes and more.

I've been prescribed 100 mg of doxycycline twice a day for three weeks by my GP. She wants to send me to an infectious disease doctor.

My question is will the doxy be enough considering this has been in my body for 4+ years? Also should I try to see an LLMD or go to an infectious disease doctor first and see what that have to say? The medical community doesn't even seem to be unified on treatment and their ideas about if chronic lyme is or isn't a real thing. Some seem to think lyme can't outlive three weeks of antibiotics some think it takes long term antibiotics combined with other methods to truely defeat the bateria.
I'm at a loss as to which doctors and methods to trust so any advice from experience would be greatly appreciated.

Thanks.

Something you can start doing right away - is detoxing.

Effective detoxing will flush out the toxins that are created when the bacteria dies-off.

There are some ideas in the "New to Lyme..." thread.

Also, here's a link to a website that has a lot of great ideas:

www.tiredoflyme.com/detox-methods.html


Start off making sure you drink lots of water - minimum 8 glasses daily.

You can add some fresh squeeze lemon juice into some glasses. Be careful - the acidic nature of the juice can damage the tooth enamel. Drinking with a straw helps...and rinsing mouth with clear water after.... Don't brush your teeth right after drinking the lemon juice.

Hi Kaitlin!
Welcome to our community! I'm so glad you found us.

Girlie has given you a lot of really good information. That amount of Doxy alone will not heal you - also, as Girlie said, this is not a sprint, but a marathon for treatment. It's not easy, but we are here to help you through this too. The Lyme bacteria are one of the more complex bacteria that is known at this time, as it can change into 3 distinct forms during the course of the infection process - or when it's feeling threatened.

​As Girlie said, 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, here's another good place to find helpful detoxing routines: ​http://www.tiredoflyme.com/detox-methods.html​​

F​​or 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 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 ​​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 and area that you would like to find a LLMD in and I will see how close I can get to your location.​

​​
​​
You can start a new thread titled something like "Looking for LLMD in the ​​
(insert the nearest larger city & state)​​ area". Members can email you about the LLMD's that they see in that area if you have your email enabled. We don't allow doctors names to be posted though.

​​
​​You can email the Tick-Borne Disease Alliance at
​[​​url]​[email protected]​ for LLMD referrals

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


​ ​
And www.LymeDoc.org

You will want to find an ILADS trained doctor, as ID Docs (Infectious Disease Doctors) as well as many others, 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

Hi Kaitlin. I just wanted to welcome you to the forum. There is a lot of info to learn but don't get overwhelmed just yet. Our brains have a hard time comprehending info so just ask questions. On
top of the page is a google search box that you can use to find more info but you have to type the word "lyme" first. For instance.......lyme what foods can I eat. By the way, no sugar, dairy or gluten.

My sister has a friend who went to an infectious disease doc who put her on doxy for 2 months. She was feeling better and he told her she was cured. Two months later she was worse than before she started treatment. Not good.

Take care.

Patty

By the way I am trying to detox and do plan to start trying herbal remedies as well.

You might want to watch the documentary "Under Our Skin" and the sequel "Emergence"

They can be rented on the website:

underourskin.vhx.tv

Hi Kaitlan,
I would like to say welcome. When I read your posts I noticed you have a question about why some of us with Lyme seek out help from llmd's or we use other treatments with or without antibiotics. I can only speak of my personal reasons, but I hope this will help you in some way.

I was bitten twice by ticks and had serious neurological symptoms and after a year of these terrible issues, and numerous tests, mri's, cat scans, 3 hospital stays,etc. my Gen. Practitioner, 2 neurologists, and infectious disease specialist still didn't think I had Lyme, or MS, or Lupus. My tests were negative. I was going downhill fast, I was sure I had Lyme. They wouldn't listen or give me any Doxy at all.

I realized I had to find a knowledgeable and experienced MD and soon. I found one and he is an internist/Epidemiologist and has over 30 years treating Lyme .
He clinically diagnosed me with Lyme and started antibiotic treatment.
My experience with him is very good, however, he doesn't do herbals and that's alright. He is aware I am doing them and he understand how they are beneficial.

I started the BuhnerHerbal protocol on my own because I wanted to make sure I would have the best chance to recover. Also I wanted to restore health to anything that was damaged in my body.
In my case I believe I have done the right thing, ABX and Herbals.
I am doing much better and it has only been 6 months in treatment so far. I know I could have set backs and I still have a long way to go, but it works for me.

Please don't settle for any thing less than the healthy life you deserve.

I understand if I have lasting symptoms I will have to accept that, but I will know that I took control of my care/healing and gave it my best shot.

Follow your heart, you are reaching out here on this forum, just like I did looking for answers and hope.

I can assure you that I never will regret not listening to all those other doctors that were wrong and seeking out an llmd.

I wish you the best of healing, Take care, Jo

Kaitlan said...

If I understand correctly most doctors have been taught and believe that any symptoms remaining after treatment with the 3 weeks antibiotics protocol are due to irreversible damage done to your body by the lyme or are related to another health issue.

that is a lie, untreated lyme infection this long will not be cured in a large percentage of people treated (30-40% maybe). They just dont want to give u antibiotics long term because they know they cannot cure you and by giving u antibiotics long term u can develop pathogenic flora, like C diff , VRE and then you can die...

On the other hand, other diseases are treated with long term antibiotics , like Tuberculosis. So long term ABX treatment is not something unusual. It's a balance between risk of treating vs risk of not treating. In case of TB the risk of not treating is very high and leads to death. In case of lyme the risk of not treating it is just moderate, you have a poor quality of life but most probably you will not die of it.

Kaitlan said...

And the only thing they can do is manage the symptoms.
Thanks again for any advice.

yes that is true. but u can manage the symptoms so well that u will not have any symptoms. it is called "remission", you still have the infection but you are asymptomatic ... that is what we are trying to achieve here on this forum. many people do achieve this, and then they sometimes pass by to send us best wishes and then leave. Sometimes they get back after years because they went through a trauma and their infection is back. Remission is not cure...

Just wanted to chime i and say welcome!

I am one who is thankfully well on the way to recovery and just want to tell you that it is possible!! I was, like you told that 3 weeks of abx was enough....it wasn't. I too was told that I would have to live with my symptoms...I didn't. I was also told by an ID doctor that what I have isn't Lyme...it is, lol!!

You have been given some excellent info, keep asking questions and the fab peeps here will always be around to help you where they can. Just know that it may seem a little overwhelming at first and you may need to try different treatments to find what works for you (I haven't used long term abx, that was my personal choice) but that it is possible to treat and heal and get your life back. Heck if I can do it, LOL!!

I hope you find help and support on this forum and that you keep us posted with how you are getting on too.

Thanks again for all the responses and advice.
I probably will end up finding a LLMD doctor. I think there is one in D.C. I just hope my insurance will cover it. I'm going to buy the documentary on amazon and watch it tonight. I'm going to look into herbal treatments to try. I've never done any kind of herbal remedies before so it's completely new to me but I'll use the information on here to get started.