After six weeks of doxycycline, improvements have plateaued. Should I just give it more time?

I tested positive for Lyme on the ELISA test in early November. I didn't see a tick bite, but I spend a lot of time running outdoors (shorts, t-shirts) in Lyme hotspots. I saw a LLMD who prescribed me a four week course of doxycycline (200mg twice per day). Based on my symptoms timeline we estimate that I was infected at some point in September - approximately 6-8 weeks before starting treatment.

My most debilitating symptoms before treatment were: brain fog, fatigue, dizziness, lightheadedness, tingly feet, anxiety/depression (coupled with a 'butterfly' feeling in my stomach).

I noticed a drastic improvement after only 48 hours of doxycycline. The anxiety, depression and tingly feet went away completely; the other symptoms remained but much reduced. Great!

After two weeks in to treatment I was in an even better place - all that remained were random bouts of fatigue and dizziness.

Now though I am six weeks in to treatment and my symptoms are the same as they were at week two. I have not regressed, but (per my symptom diary) I have not progressed either. I have been prescribed a further course of doxycycline and will review with my LLMD after approx 10 weeks has passed.

I am awaiting results for a Lyme Immunoserology Panel B test to look for co-infections - blood was taken for this four weeks in to treatment.

Is my recovery timeline thus far "normal"? Is it a case of waiting it out and sticking with the treatment? I had led myself to believe that - after the first couple of weeks of doxycycline - my improvements would be quite linear and therefore I'd be close to 100% by now. That's not how it has played out; it's as if the recovery graph has a long tail.

I am wondering if it's worth exploring modifying the antibiotic in play, or adding a second, or perhaps exploring other ideas for kicking the fatigue and dizziness in to touch.

With regards to diet and supplementation, I've been on the keto diet for the entire duration, and am also taking: multivitamin, vitamin C, vitamin D, alpha lipoic acid, omega fish oil, magnesium glycinate, acetyl l-carnitine, CoQ10, ashwanghanda, liposomal glutathione, cucurmin, probiotics, nattokinase, artesunate.

Keen to hear the community's thoughts?

If you saw improvement with doxy but then plateaued and still have continuing symptoms best bet is to rotate therapies. Monotherapy is usually not enough, especially if the infection(s) has established itself and if there are coinfections. The improvement with doxy is good sign and a helpful indicator that likely means underlying infections are driving symptoms. Would be good to see what your llmd proposes, and as tickbite666 mentioned, a negative on a lab test doesn't mean an infection can be ruled out conclusively. Some of it comes down to clinical diagnosis based on your symptoms and response to particular therapies.

I've heard good things about keto, seems to really help some patients, Those supplements sound good.

Welcome to our community!

With acute Lyme - you should be treating until symptom free plus several more weeks.

I would discuss with your LLMD sooner than later that you have stalled out - can you talk to him sooner than 4 weeks time?

I had to stop ashwanghanda because it was making me sicker. But then 2-3 months later it worked again, and then stopped, I no longer take it but have it. What this has caused is that I have an arsenal of vitamins,herbs,medicines that sometimes work, don't work, or I know only to take at a certain stages, or I forget about and try again, sometimes negative/positive results through the process of elimination

One thing you should know is that there are high incidences of false negatives with lyme and even more so with the coinfections.

So... positive results are useful but negatives don’t rule out those particular infections.

On the topic of coinfections - my remaining symptoms are all ad-hoc, but most days:

* bouts of fatigue (exercise can induce this, but sometimes fatigue comes on with no obvious cause)
* dizziness (tasks like emptying dishwasher in to cupboards can induce this - where my attention quickly moves from point to point)
* drunk-like light headed sensation in my mind (similar to the 2-3 beer stage in a healthy individual)

Generally I'm only experiencing them in isolation, not combination.

Treating symptomatically with gotu kola or acetyl-l-cartenine really helps reduce the symptoms. Generally they disappear after 30-60 minutes if I do treat them.

Do these symptoms align with any particular coinfections? I'll ask the same of my LLMD, but keen to hear people's views here.

I received my test results today. Could I please get some help from the community in interpreting them? Here is a link to the results: https://imgur.com/a/bjateu2

I think the antibody test confirms Babesia at the very least? "Results reported as 0.81-1.199 index are considered equivocal"; my IgM BABESIA PEPTIDE result was 1.2.

Everything else I am not so sure about due to the ambiguity (and lack of expertise on my part). Edit: I know that negatives cannot be taken as gospel, but what truths can be determined from this set of results?

The blood was taken around 4 weeks in to my treatment (200mg doxycycline twice per day plus other supplements outlined in my original post in this thread.)

I am seeing my LLMD tomorrow to review the results (and will post back here with his comments + recommendations), but am keen to hear your views also.

Thanks!

Post Edited (eat_more_veggies) : 1/7/2019 1:35:55 PM (GMT-7)

Thanks for taking a look and posting your reply. What antiprotozoals are commonly used for Babesia?

Thanks. It's interesting that antibiotics are used - I thought Babesia was a parasite (not bacterial), so therefore what benefit does the antibiotic provide? The benefits of including an antibiotic for Lyme and other bacterial infections makes sense.

Yeah, that does make sense. Lyme suppresses the immune system, so by targeting both simultaneously I can see how the overall effectiveness could be greater than the sum of its parts, so to speak.

Coming from a software development background I am used to dealing in absolutes, but everything in this Lyme treatment journey is so interwoven that it's a challenge for me to think about things the right way and to see the overall picture.

Thanks for your help. I am seeing my LLMD later today (based in UK); will post an update after that.

For what it's worth, since my treatment started I have been taking Artesunate (https://en.wikipedia.org/wiki/artesunate - a form of artemisinin) four times daily, per my LLMD's direction.

Anywho, time to get ready for my appointment!

Just got back from my appointment with my LLMD.

We started by reviewing my test results (see: https://imgur.com/a/bjateu2), and he explained that this does in his opinion show active Babesia. For that he has prescribed four weeks of:

• Malarone (750mg 3x per day)
  
• Clarithromycin (Biaxin - 500mg 2x per day)
  

Plus continuing with the Artesunte (artemisinin) and nattokinase (alleged biofilm buster).

Based on clinical diagnosis, he gave me the choice of stopping the doxycycline, which I have decided to do. The alternative was to keep on it for four more weeks. I saw great results almost instantly with doxy, but the improvements have plateaued. Eight weeks of such a high dosage has affected my gut, so I think it is wise to give my microbiome a chance to recover.

That said, it looks like Clarithromycin is an antibiotic. I didn't realise this during my consultation - will this mean that I may continue to experience gut issues? I was advised to double my probiotic usage if I do have further gut issues, and to keep him updated.

We took bloods to verify my haematology and biochemistry profile is still in order (i.e. that the extended use of antibiotics hasn't had too much of a damaging impact on my body).

He has encouraged me to introduce the Buhner (or Cowden) protocol, of which I have already been taking Cat's Claw, Burbur, Pinella and Banderol.

I am also to continue with probiotics, a ketogenic diet and maintaining my focus on keeping good health.

I'll continue also with vitamins and supplements (multivit, vit C, vit C, magnesium, alpha lipoic acid, omega fish oil,, acetyl l-carnitine, CoQ10, ashwanghanda, liposomal glutathione, cucurmin, mushroom complex, moringa tea, herbal teas, etc.)

What was also encouraging was he suggested all of the above without me making any suggestions or pointers for direction. So I feel like I am in good hands.

I am going back in four weeks time for another review. I'm feeling pretty positive about all of this - I think holistically this is a good regime to crack on with for the time being.

Thanks Girlie.

Yes, have been taking Nattokinase on an empty stomach (as soon as I wake up in the morning) since treatment started.

Regarding probiotics, I have been taking Ther-Biotic Factor 1 (https://klaire.com/v771-06-therbiotic-factor-1) and Ther-Biotic Factor 4 (https://klaire.com/v774-06-therbiotic-factor-4) every evening, at least 3 hours after antibiotics. I have also been taking this drink every evening before bed; no idea how useful it is: https://www.amazon.co.uk/dp/b07kjvkp1z?ref_=pe_3187911_248764861_302_e_dde_dt_1

Are there any other probiotics you recommend I add to my rotation?

Regarding bloodwork, my LLMD agrees with your statement and has made me get all of that tested (red blood cells, white blood cells, liver, kidney, thyroid, etc.) every 4 weeks thus far. He's taking it very seriously.