Lyme recovery

[Prairie Dawn]

Ds12 got very sick with Lyme disease about a month ago, 8 days after camping near a known Lyme area. Fever of 102-103, chills, neck pain, muscle pain, headache, joint pain especially in knees and hip, weakness, dizziness, night sweats, etc. On the fourth day of sickness an expanding round rash appeared, with a couple smaller spots appearing soon after (disseminating). 

It took a couple more days with a lot of runaround and misdiagnosis and a couple different visits before someone believed me and recognized it as Lyme (after 6 days of being sick), and he got 14 days of Amoxicillin. He worsened for a short time after starting the Amoxicillin (needed to be carried and assisted in sitting up, 104 fever) but within 24 hours on the antibiotic, he made a huge turnaround. Unfortunately, he caught a stomach virus soon after, so I requested an extra week on the antibiotics. 

He has been improving every day, though still has some ongoing fatigue. A few vague symptoms have come and gone, but it was hard to determine what was Lyme, his own immune response, or the antibiotic. 

When he was finally diagnosed I was so relieved I didn't think of any questions, so I left with more info about antibiotic side effects than anything about Lyme disease. And Google REALLY is a mixed bag with Lyme searches...

If you are familiar with Lyme, and don't mind sharing from your experience:

Was 21 days of Amoxicillin, 500mg 3x/day enough? It was started about 14 days after the bite. 

What would we watch for if the Lyme isn't completely gone? Or if there were co-infections?

If it is successfully treated, how long before being completely recovered?

[Catwoman]

Ideally, he should have had doxycycline for 30 days — and very possibly longer than that because your son developed symptoms before being diagnosed. Personally, I would not trust 21 days of amoxicillin and would request that he be given a prescription for the doxycycline.

Has he had a Western Blot test for Lyme? You need to find out what’s going on. I wouldn’t trust a doctor who decided anyone was cured based on waning symptoms, because Lyme symptoms can come and go — and the last thing you want is for your son to develop chronic Lyme. 

 

[Corraleno]

I would want at least a month of doxycycline, even after the amoxicillin. I'm not sure why they gave him amoxicillin (and only 21 days), as I believe they normally prescribe doxy for ages 12 and over.

Whichever antibiotic he's on, I highly recommend adding a probiotic called Florastor. Unlike most probiotics, it's not killed off by abx and it prevents the unpleasant GI issues that usually result when your gut flora gets nuked. It's also supposed to boost your immune system. I never ever take abx without it.

[HomeAgain]

DS 8yo is currently being treated for Lyme.  He had only the rash symptom, but he was given 28 days of Amoxicillin by the on-call doc at our clinic. We'll be going in for a follow up with his regular doctor after he's done with that.

[Carrie12345]

I honestly can not remember if ds was given 21 days or 28 days, but it was not 14 days.

His symptoms were quite severe and dx took us weeks.  His symptoms ended before he was finished with the abx (of course he still took them) and he hasn't had any trouble since.  Well... sometimes we wonder if his food aversions might be related, but he was already picky before that.  Otherwise, in good health.

 

[Lizzie in Ma]

Not enough.  The spirochetes have a 28 day life cycle, you have to treat longer to get to them.

[Pippen]

5 hours ago, Catwoman said:

Ideally, he should have had doxycycline for 30 days — and very possibly longer than that because your son developed symptoms before being diagnosed. Personally, I would not trust 21 days of amoxicillin and would request that he be given a prescription for the doxycycline.

Has he had a Western Blot test for Lyme? You need to find out what’s going on. I wouldn’t trust a doctor who decided anyone was cured based on waning symptoms, because Lyme symptoms can come and go — and the last thing you want is for your son to develop chronic Lyme. 

 

My friend who has chronic Lyme would also say absolutely insist on a month of Doxy. Even now since the fatigue indicates he possibly hasn't fully recovered.

[Wheres Toto]

Sorry to hijack but is there any test to determine if someone has chronic Lyme?

Dh tested positive for Lyme disease months ago.  We don't know how long he had it but think it was probably already a while at that point.  I pulled one (large, dog) tick off him but he works out in our very overgrown back area and likely gets ticks frequently.  He never had a rash that we noticed.   He's been feeling fatigued, brain fog, muscle aches, etc.  The doctor put him on 30 days of antibiotics but he still feels most of the symptoms.  A second blood test still came out positive and doctor referred him to an immunologist (who is supposedly a Lyme specialist).  The immunologist didn't do much of anything and told dh he thinks his problem is likely sleep apnea.  ?  Now, dh is an overweight older man but he's been an overweight older man for the past 20 years.  Most of these symptoms are new for less than a year.  He's less active now that he was for a while but that's because of the fatigue and muscle aches.   He is doing a sleep study in a few weeks, but I'm just wondering if there's something we can push for to determine if the Lyme is still part of this problem.

[StephanieZ]

Was 21 days of Amoxicillin, 500mg 3x/day enough? It was started about 14 days after the bite. 

NO

What would we watch for if the Lyme isn't completely gone? Or if there were co-infections?

This is not a good approach. Don't wait and watch.

If it is successfully treated, how long before being completely recovered?

A few months, IME. (I got sick mid May 2017, in/out of ER/DR until finally diagnosed mid-June. Nuclear antibiotics for 3 months.

My healing journey:

Within a day of starting the first antibiotic (1 month from onset of flu like symptoms and 2 weeks from onset of head pain), most of the pain was gone. (I'd had Lyme meningitis, where the bacteria get into your spinal fluid and brain and cause swelling and incredible pain).

Within a week, the pain was truly gone.

At about week 4 of the drugs (8 weeks from onset of symptoms), I began having some new symptoms of knee pain. That pain came and went for months, not fully going away until about 3 months AFTER completing 3 months of antibiotics. (So about month 6-7 from onset of illness). My understanding is that that sort of joint pain can be inflammatory, so sometimes it just takes a while to heal even after the drugs are done and the bacteria is gone. Indeed, that's how it worked for me.

About 4-5 months after completing the drugs (so about 7-8 months after onset of illness), my energy levels were back to pretty much normal. If I had to try to graph it, I'd say my energy levels, with 0 being can only get out of bed for less than 30 min/day total and can do no significant work and sleep 16+ hours per day every day . . . and 10 is "normal me" . . . I was probably at 0 for about 2-3 months from onset of illness ramped up to 3 around the time I was finishing the drugs. I was up to a 6 or so by 5 months, and at a 10 by about 8-9 months. 

I could not have worked, gone to school, cared for young kids, or done any significant work for a full 4-5 months. And surely could not have worked FT until at least 6 months.

+++++

I STRONGLY urge you to find a "Lyme Literate Medical Doctor" and get better treatment. NOW. 

IME, it is an emergency, and I would take no chances.

I had a somewhat similar case of VERY severe acute Lyme a year ago. By catching Lyme during the acute phase, you have a good chance of complete cure. That chance is immeasurably higher if you treat aggressively and for several months.

If you don't cure it now, and it comes back, you're UP SHIT'S CREEK for years to lifetime of illness and treatment. There is no reliable CURE for chronic Lyme. 

So, to me, it's WELL worth the effort, cost, and risks of short term (3 months or so) of aggressive treatment for acute Lyme to drastically improve the odds of a complete cure. If there's even a 10% or even 1% chance of lifetime severe illness, isn't that worth the risks of 3 months of strong antibiotics? To me, it was, without any doubt. 

I took "nuclear level" antibiotics for 3 months. I was on 2-3 different antibiotics, all at VERY high doses, at the same time, for three months. DR would rotate antibiotics, so I'd take one regimen for a 2-3 weeks, then the next thing. Some meds were 7 days a week, others 5, etc. It was complex. The drugs were brutal. 

If my kid had Lyme, I'd absolutely spend any money and go to any trouble needed to make sure they received the best possible treatment immediately. 

IME, that treatment is NOT AVAILABLE in the traditional insurance-accepting system. You HAVE to go outside the system to get any adequate advice or treatment. 

I am CURED, and my life is now normal. Given what the alternative is . . . I would URGE you to get appropriate medical care. 

That's my advice. Take it or leave it. Your call. 

 

 

 

 

[BlsdMama]

I’m begging you to find a Lyme doc. Please. 

 

I had a very similar scenario in 2008 - antibiotics in an insufficient amount.  I cannot prove that that was the tick to put my medical journey into motion, but I’d give anything to go back and take a few months of doxycycline.

As an aside, it may not have been a tummy bug. He needs to be on an excellent probiotic while taking meds and ideally two would be better.

 

[Prairie Dawn]

Wow. *deep breath*

A little more info:

 Yes, he was taking a couple different probiotics staggered between antibiotic doses, one of them Florastor. We probably brought home the stomach virus from one of his appointments and it went through everyone, which is how sickness usually goes in a family of 8. With his Lyme symptoms, he was the ONLY one sick, very sick, so it was glaringly obvious it wasn't influenza or mono they were testing him for. 

Through it all, he never saw a doctor. First a PA, who really wanted it to be something else and tested for influenza (no respiratory symptoms), mono (he'd already had it) and reluctantly a Lyme IgM/IgG (which was negative, of course - too early on for antibodies). I really think they wanted it to be something else (since I hadn't seen the tick) and Lyme isn't really common here.

The NP who diagnosed him ("telltale signs" - I felt so validated!) went back and forth between Doxycycline and Amoxicillin, but was concerned about it with his weight (78 lbs?)so went with Amoxcillin. When I emailed my doctor to get the Amoxicillin extended, it didn't even go to her. It was such an uphill fight to get anything. 

 

 

 

[Pen]

Both @ OP and other person asking about chronic Lyme 

find Lyme Literate MD if you possibly can

get the Buhner book on Lyme disease and start reading 

iGenex testing is generally supposed to be  better than the other tests especially for chronic 

treat plenty long ... it can go into a dormant state and then re-emerge 

Edited July 11, 2018 by Pen
Misspelled igenex

[Pen]

I personally know very few people who have actually been cured from Lyme. 

I know a number who thought they were cured only to have it re-emerge as a chronic condition after a time of apparent wellbeing. 

[Pen]

Stephen Harrod Buhner. Emphasis is on herbal treatments, but explains about Lyme and is excellent for the explanation even if you have no interest in the herb part. 

[Catwoman]

1 hour ago, Where's Toto? said:

Sorry to hijack but is there any test to determine if someone has chronic Lyme?

Dh tested positive for Lyme disease months ago.  We don't know how long he had it but think it was probably already a while at that point.  I pulled one (large, dog) tick off him but he works out in our very overgrown back area and likely gets ticks frequently.  He never had a rash that we noticed.   He's been feeling fatigued, brain fog, muscle aches, etc.  The doctor put him on 30 days of antibiotics but he still feels most of the symptoms.  A second blood test still came out positive and doctor referred him to an immunologist (who is supposedly a Lyme specialist).  The immunologist didn't do much of anything and told dh he thinks his problem is likely sleep apnea.  ?  Now, dh is an overweight older man but he's been an overweight older man for the past 20 years.  Most of these symptoms are new for less than a year.  He's less active now that he was for a while but that's because of the fatigue and muscle aches.   He is doing a sleep study in a few weeks, but I'm just wondering if there's something we can push for to determine if the Lyme is still part of this problem.

 

A Western Blot blood test can check to see if Lyme is still active. If your dh had a positive test and wasn’t put on doxycycline and re-tested every 30 days to monitor the Lyme titers, that’s BAD. Please get him to a doctor and insist that he be tested and treated. 

 

[Catwoman]

Just a side note — in addition to Lyme, there are other serious tickborne diseases and people can be co-infected with them when they also have Lyme, so if someone has been diagnosed with Lyme disease, don’t automatically assume that it’s ONLY Lyme disease. That’s why it’s so important to have a Lyme-literate doctor.

[Spryte]

Just echoing those who’ve said Lyme needs more than 21 days.

Honestly, with the kind of symptoms you describe, OP, your whole post is screaming, “Babesioisis!” at me.

Get to an LLMD.  It’s worth the effort.

[StephanieZ]

On 7/11/2018 at 11:06 AM, Pen said:

I personally know very few people who have actually been cured from Lyme. 

I know a number who thought they were cured only to have it re-emerge as a chronic condition after a time of apparent wellbeing. 

 

My LLMD (who works FT with his case load probably 90% Lyme patients) knows tons of people who have been cured -- IF it is caught during the acute phase (generally about 30-45 days from onset of symptoms, IIRC).

Curing chronic Lyme, now that's a whole 'nother kettle of fish. Much, much rarer.

This, IMHO, is exactly why it is critically important to treat Lyme aggressively and immediately. Because I knew people with chronic Lyme, I understood how critical it was to avoid that at all costs, which is why I went with the very aggressive treatment I did. 

Oh, also, re: probiotics. Yes -- CRITICAL for survival on these levels of ABX. Absolutely critical. I went on them from Day1 (June 2017) and swallowed a pile of them a couple hours ago, 10 months since finishing my last ABX doses last September. 

I was on about 10 capsules several times a day for months. High quality probiotics & prebiotics among other things. General rule of thumb is 1 month of probiotics for each week of antibiotics (in addition to taking them while you are actually ON the ABX), so that was a full year for me, as I was on the ABX for about 12 weeks. My year of post-ABX time will be up in September. ?  I'm still taking them, but a bit more erratically than the first many months.

 

 

[Farrar]

Ds had the 21 days years ago when less was known and he did recover fully as far as I can tell. It's been many years now and zero symptoms that are anything like Lyme. Of course, you never know long term, but... shrug. At this point, there's nothing to be done.

If it were now, I'd absolutely insist on the 30 day course. It's so weird to me that so many doctors are SO behind on this. I mean, even years ago when ds had that classic presentation, they didn't even test for Lyme, when they saw the rash. They marched all the nurses through to say, see this, it's Lyme. Don't mess around with it and give the abx without delay or further testing. Poor ds was so out of it or I think he might have objected. He was also pretty little. But knowing that, it's crazy to me that people are still having this experience in a classic case.

[Selkie]

Ds had Lyme ten years ago and recovered fully. I think he took Doxy for three weeks - not exactly sure on that because it was so long ago, but I don't believe he took it for a full month.

Lyme is very prevalent in our area and I know quite a few people who've had it - including my dad, who had it way back in the 80s. Everyone that I know has recovered fully after the initial treatment. 

[nevergiveup]

Love Stephen Buhner.

He recommends one stay on his protocol for 8-12 months and it is not cheap.

My husband and son waited 3 months to go to an LLMD for chronic symptoms and inconclusive tests (Lyme tests are notoriously inaccurate).  They told him they were on Stephen Buhner's protocol and he said, "Great.  Keep doing that."  He did order some more testing to check for the all too common co-infections.  Waiting for results on those.  But, we plan on using Buhner's protocol for those, too.

[countrygal]

As long as he is symptomatic you can guarantee that it is a persisting infection (proven scientifically) and not just residual 'inflammation' (not proven scientifically.) Get him atleast a month of doxycycline preferably without a gap from the amoxicillin. Don't expect a mainstream doc to help him, although you can try because he is acute. Take pictures if he still has rashes. Go to ilads.org and go through the provider search. Try lymedoc.org too. Look for MD or nurse practitioners, chiropractors and many NDs dont prescribe antibiotics. RUN there, be prepared to drive far. Chronic lyme has destroyed my health and robbed me of many years of my life. Do not wait and see what happens. 

[Catwoman]

I saw this thread bumped back to the top and I was hoping Prairie Dawn had posted an update. I hope she was able to get the doxycycline for her son and that he’s on the road to a permanent recovery.