posted
I'm taking 100 mg of doxycycline 2x a day for 28 days. Is this the standard first line approach for long term Lyme? Should they have started me on IV antibiotics or is a conservative first approach a good safe bet?
I don't have arthritis and my brain fog/exhaustion are no where near their worst BUT my doc did say she's never seen anyone test more positive for Lyme with a 9 on the titer thing.
I'm just wondering if the doxy is a waste of time or is it reasonable or is it only creating more probs down the road by not being effective enough from the start.
Thanks for your help if there's anyone out there with any knowledge on this. Just diagnosed yesterday with no prior knowledge of any of this.
Posts: 154 | From Boston | Registered: May 2014
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Hi Samlyme,
I'm sorry you are neurolyme. Me too!
Are you seeing an LLMD or an LLND?
I am glad you are starting off with doxycycline. The dose of 200mg a day is not effective for killing lyme. (I'll expand on this later).
But it is good for some common coinfections, like erlichia and rocky mountain spotted fever and anaplasma.
So if you have those, it will kill those. Ticks are filthy. Give us all sorts of bacteria.
Doxycycline alone converts 40-60% of the lyme spirochetes (the screw shape), into a cyst form. The cyst form is a 'dormant' form that is not 'killable' by the majority of antibiotics.
Also, the normal dose that a Lyme Literate doc will prescribe is 400 mg a day.
So, you take 28 days of doxycycline. It kills only 40% of the lyme in your body. (at 400mg per day).
28 days doesn't cover a complete growth cycle for lyme...
You stop taking the doxy.
The lyme bacteria that weren't killed by the 400 mg of doxy keep reproducing. (Every 28 days to maturity). They convert out of the cyst shape back into spirochete and l-form, and continue their assault through your body.
This is how many of us got chronic.
We took a low amount of doxy, by itself, for too short amount of time.
NOW, if your doc is trained by ILADS there is another possibility. (This is what mine did.)
Put me on doxycycline, 400 mg a day.
It killed my rocky mountain spotted fever, and anaplasma.
Then it converted my lyme spirochetes into cysts.
My body got a break. The bacterial load was reduced. I started to feel better.
Then, about 2 weeks in, my doc ADDED another antibiotic called Tinidazole.
This antibiotic kills the CYST and ROUND BODIED forms of lyme.
So I was taking high dose doxycycline, and tinidazole.
Then two weeks of this combo, my doc added in Biaxin.
The combo of these three antibiotics kills the majority of lyme IN THE BLOODSTREAM and TISSUES.
NOT in the cerebral spinal fluid, or the brain.
I took these for 2 months. My doc wanted to get the bacterial load down in my body. Patients with neuro lyme sometimes herx so badly, their brains swell.
Then my LL switched the doxy for minocycline. (Minocycline better crosses the blood brain barrier).
And cross it did, for 2 months, every 4 weeks I herxed like hell.
After 4 months on oral antibiotics, at least three at a time, (to bring down my bacterial load), we then ADDED in IV antibiotics to help with the neuro lyme.
And here I am, recovering day by day. My doc also treated other coinfections I had/have (bartonella, babesia and mycoplasma)
So, my question for you is:
Were you tested for any coinfections? Most of us have them, especially us neuro lymes.
Is your doc trained by ILADS? If so you can expect to get continued care until you are well again.
Is your doc a regular pcp or an infectious disease doctor? If so, you can expect to get chronic, and receive the dreaded Post Lyme Disease Syndrome diagnosis in 28 days (Which just means you still have lyme...) and a diagnosis of MS or ALS or Alzheimers in the future.
Sounds exaggerated? Nope. Sad to say, most of us are here, and chronic, because of ****ty care (aka negligence) from docs who don't stay current on the studies into lyme.
At the top of the MEdical Questions forum, there is a link called
"Dr. B's Guidelines"
This is how you should be treated for lyme. People being treated with this method, with neuro lyme, are the ones getting better (most of the time). Sadly we lose some good friends along this journey.
And if you go to Seeking a Doctor, and post your state, many seasoned lymenetters, will respond and send you contact info for GOOD, well trained, ILADS doctors closest to you.
This is a super friendly forum, with kind hearted folks.
You made a good decision asking your question and don't ever feel embarrassed to ask any more questions on this forum, everyone here is well meaning, and guaranteed one of us has had similar symptoms or experiences.
It is a supportive place.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Hi SamLyme,
Here is a link to a thread another poor person had.
Doxy, the Post Lyme Disease Syndrome diagnosis a year later.
Breaks my heart.
Lots of GREAT GREAT responses and information in this thread from other folks on lyme net.
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
There's a book called "Insights Into Lyme Treatment" with excerpts online. There's a part that talks about aggressive treatment versus ramping up. It's on pages 124-125, but the chapter starts on page 121.
I hope this link works. If not, you can find the book in google books and you want to read the chapter 4 by Ginger Savely:
posted
Thanks so much for all the info. I have a lot of learning to do. I think I've had this for at least four or five years. I have another quick question.
So is it a bad idea to even start taking doxycycline 200mgs per day for 28 days?
Should I just take my diagnosis and find a different Dr who will treat more aggressively from the start?
Or is there no harm done in taking this dosage and killing off an initial slew of other rocky mountain spotted fever type bacterias?
Posts: 154 | From Boston | Registered: May 2014
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
I would still take it. Rocky mountain, erlichia anaplasma.
It will kill those off, and also give your immune system a bit of a boost.(Note: some strains are resistant and need further combo treatment. But in theory and ideally it will kill those off if you have them).
It does kill some spirochetes.
So you will feel a bit better on it
Be sure to take each dose on a full stomach. It is hard on the guts.
And also, start loading with probiotics, at least 2 hours away from the doxycycline.
And hopefully you can get in to see an LLMD in the next 28 days
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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I just started working at a new job and initially chose the cheapest health insurance. I work at a University and the plan only covered Dr's working within the University Medical Center. Other employees have been really happy with their care and if you need a specialist they refer you out. It's great they immediately identified that I have lyme disease when the many many many Dr.'s I've gone to for years and years never thought to check but I'm guessing they won't try any aggressive type treatments.
Thankfully, since I'm still within my first thirty days here I was able to upgrade my plan to Blue Cross so I can now go to anyone who takes that insurance, and hopefully now I may have a somewhat better chance at finding a LLMD.
Posts: 154 | From Boston | Registered: May 2014
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