LymeNet Flash: True or False-Lyme worse before better?

This is topic True or False-Lyme worse before better? in forum Medical Questions at LymeNet Flash.

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Posted by HECE99 (Member # 6749) on :

I have started my treatment for Lyme approximately 6 weeks now. I am guessing that I have had Lyme Disease for about 2 years.

I have been taking 400 mg of doxy/daily. I was told that when taking this within the first day or so, I would experience some unpleasant reactions "feeling worse before better".

After reading many stories and researching, most people say that they start feeling really bad after the antibiotics are given.

As of today's date, I have never had any symptoms of getting better or worse. I'm exactly the same as the first day I walked into the doctors office. I was a bit concerned when my physician had a puzzled look on his face after telling him I never experienced any abnormal/worse symptoms. He just suggested keep taking them for another 30 days and see what happens. My doctor's advice was more of a guess than an answer.

I'm starting to think that this is not working for me. Maybe higher dosage or another alternative?

Do you have to "get worse" to know if it's working or not?

Any thoughts????? I'm still new to this.

Posted by nan (Member # 63) on :

Hello....and sorry to hear you have experienced no improvement or herx reaction which does make you feel worse. You are kind of staying at status quo?

Six weeks is perhaps too soon to throw in the towel. Treatment for lyme takes a huge amount of patience and fortitude. I know I felt as lousy as ever up until about 6 months when I began seeing a slight improvement and then it was sporadic.

That being said, I would hope you have been tested for coinfections. The general consensus is if you have a coinfection you need to treat that first before you will see
improvement with the lyme.

I also wonder if you are seeing a Lyme Literate MD (LLMD) who has had experience treating lyme and the coinfections. Most of us have discovered that this is the key to getting better.

You may find that any day now you will experience the worsening of symptoms which is called a herx. On the other hand, people here have reported that they never have experienced a herx. It is variable from patient to patient.

Hang in there a bit longer...and check out coinfections and be sure you are being treated by an experienced doctor.

Wish you all the best.
nan

Posted by riversinger (Member # 4851) on :

nan has given you good advice, and I can only second what she said. Herxing or not is extremely variable. Improvement can take a very long time.

I don't know how knowledgable your doctor is. Unfortunately, even the best have to make their best guess as to which med will work in any specific situation. Treating Lyme is not an exact science.

Were you also tested for coinfections? That can have an impact on how quickly you recover. If you haven't read much about Lyme, you might want to start here:

Treepatrol's Newbie Links

------------------
Sonoma County Lyme Support
[email protected]

Posted by hatsnscarfs (Member # 6562) on :

I noticed improvement on day 90 of doxycycline. Hang in there. Also remember to avoid calcium, antacids etc. near doxy time.

I've since switched to tetracycline 1500mgs day (750+750). It is working better for me and is easier on my stomach than Doxy.
h&s

Posted by Lyddie on :

We also experienced nothing-bad or good-on doxy. Doxy is also good for erlichiosis, so at least that's covered.
Tetracycline was much more potent with our Lyme, sometimes too much so!

Posted by Walnut (Member # 6585) on :

I think that the experience after starting antibiotics differs much from person to person. I have been undergoing treatment for over 1 1/2 year and never have been herxing. I have been on doxy, ceftin, omnicef, zithromax, ketek and IV rocephin.

I have heard from others who also never herxed, but just slowly started to get better after months of treatment.

Posted by HECE99 (Member # 6749) on :

Thanks everyone for your help! That makes me feel a lot better. Patience I suppose is the key to getting well and back to my normal self again. This has been a real nightmare (for everyone, I'm sure). I guess patience, rest and taking care of myself is the answer to getting well.....at least a good start. THANKS EVERYONE!!!!!

Posted by TheCrimeOfLyme (Member # 4019) on :

It all depends on the individual, their strain of BB, coinfections, and whether or nto the abx is doing the job, and how they respond.

There are so many other variables.

I never went back , herxing wise, BEYOND my deathly ill lyme symptoms. It was a gradual improvement upwards. HOwever, I did get stuck for about 5 months

where I was sliding further and further back.

A little bit of changes, and I made headway again.

Posted by SteveInMinnesota (Member # 6661) on :

Just as a comparison, my first herxing episode started 14 days after starting 400 mg of doxy/daily and lasted about 36 hours.

I don't know anything at all about this disease other than it seems to affect everyone a little differently.