Feeling better, now worse?

Hi Everyone,

I tested Lyme positive in Sept 2009.  I was treated then, but unfortunately not successfully.  The DR I saw didn't know anything about Lyme, nor did I.  Three years later and I feel like I know more than most doctors!  After mistakenly having a deep tissue massage a few months, Lyme has really kicked up and I've been feeling pretty awful.  I found a new doctor who better understands Lyme, and she started me on another round of Doxy for three weeks.  I began it Wednesday, and within about a day, I was feeling great, although I knew i would be shortlived.  Now Saturday, and I feel like I have the flu, not severely, but enough that I don't want to get off my couch.  I'm starting to get some shooting pains in muscles that I didn't have problems with in the past, too.

My question to everyone is this.  Is it common to start off feeling really good, then begin Herx reactions?  With three years being ill, should I be preparing for the Herx to get worse?

I know they can be really, really bad for some people, but I've never had one to an extreme, likely because I was only treated early on.  My husband and children do not know what is in store for me, but honestly neither do I.  Has anyone had similar experience with the disease about as long as me?  I am not sure what to expect here, and I'm a little nervous.  For now, I'm going to keep plugging away, getting all my little ducks in a row in the event this does go south and I'm down for days, or worse, weeks or months.

Thanks in advance for sharing your insight!

Kerry

34, Pennsylvania

Hi Tera,

I have to agree. I've had it three years. Symptoms come and go, but something is always there. I am taking 100 mg of Doxy twice a day. As of this morning, I'm on pill #6. My right knee, right shoulder, and left wrist are usually what bother me the most, but what's funny is that now I've started treatment, none of those hurt, but other joints and muscles do. I know that it's common for the antibiotic to expose lyme in places you didn't even know it existed, so I'm not surprised.

My hope is that it gets no worse than this, but I know it can take days, weeks, or months for treatment to become effective, and that is if my strain isn't resistent to the antibiotic I'm on. I am running a low grade fever, so my assumption is that things are starting to work.

I, too, just want to have relief, to feel normal again, to not become exhausted from walking up the stairs, and to not have to decline offers to do things with my husband and sons because I know what it will do to me.

I hope things go well for you, Tera. It's no fun, but attitude is everything. Stay positive, focused, and don't take no for an answer from anyone. It took me years to find the right doctor who knows and understands. Don't ever give up on that.

I wish you well!

Kerry

Hi Summer,

Yes, she does. The doxy is our first approach, and she opted to start with a three week cycle. If it's not effective (which we both agree it likely won't be), then I'll go in for IV antibiotics, and then another round of doxy after that (or another antibiotic).

I haven't been tested for co-infections. In fact, I haven't had any tests run since my initial tests three years ago for Lyme. We've ruled out everything else, fibromyalgia, lupus, ms, etc., and Lyme is all we have left. She wants to do more bloodwork after the 3 weeks of doxy, too. She's an infectious disease dr, but she is lyme literate, so I'm hopeful I'll make some progress with her.

I've been feeling worse as the day has gone on, and I haven't yet taken my second pill for the day. I'm feeling it in my hands a lot now, and all my veins are raised up out of my hands and my fingers are tingling. Other than that and the flu like symptoms, I'm not feeling any worse... yet.

Fingers are still crossed! :D

Thanks for the advice, Summer. I appreciate you and everyone here!

Kerry

Hi Kerry,
I'm so sorry that you have been dealing with this for so long.
Besides the very valuable information that Borderlyme has shared with you, there is the fact that you are on a very low dose of Doxy. At that dose, you won't be killing off the bacteria, only preventing it from replicating, so you aren't doing anything to actually get rid of the infection, only keeping it from spreading further. Once you stop the abx, you will feel poorly once again.

Also, three weeks treatment isn't enough time to clear out an infection that was only just received, so it won't be nearly enough time in treatment for someone who has had this infection(s) unresolved for as long as you have.

You really should read through our "New to Lyme? Start here!" thread as it has a whole lot of important information and informative links, as well as symptom lists.

The symptom lists come in handy as they are used to help us understand what other tick-borne infections we most likely are dealing with. The blood tests for these infections leave a lot to be desired. For one thing, they only test for 4 or 5 (at most) strains of the different bacteria, when there are many, many more that are out there that we could be infected by. Lyme Disease has over 100 different strains here in the US, 300 world wide. Bartonella has over 30 different strains and we only test for a couple of those. Babesia has over 20 different strains and Rocky Mountain Spotted Fever has at least 19 different species.

That's not to mention that it's believed that both Lyme and Bartonella can actually "turn off" our immune system. Most of the blood tests only test for anti-bodies, and without our immune systems working properly, we don't produce those antibodies!!

You really should find a LLMD that knows more so that you have a better chance at healing completely. Chances are someone here may know of one that is near you. I would suggest that you start a new thread asking, and have the topic of the post say something about looking for a LLMD in your area (wherever that is).

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


A word about herxing. If it gets too bad, you will need to lower or stop your treatment! Herxing is a healing crisis in the body. When the body is in crisis, then it will slow or stop the healing, and if bad enough, it could actually do more damage to your body. This is not something to just 'ride out' unless it is mild. There is no reason to bring more misery into our treatments! Detoxing is key to reducing the amount of herxing we do.

Perhaps the best news though is that you aren't alone! We are all here to help you through all of the information, and trying to figure out what may be going on! These infections affect each person differently as they "play' off of our bodies weak points, but we have so many members that most likely you will find others dealing with the same symptoms!!