Has anyone taken a short term treatment, or the CDC guidelines for treatment, and gotten better? With late-term Lyme?
Most people seem to be on antibiotics for a long time. Seems to work for some.
But i was curious if anyone did a 4 week PICC or something along those lines and ended up getting better as time went on?
Posted by adamm (Member # 11910) on :
Sure--if you consider accepting a diagnosis of MS, ALS,
Alzheimer's, Parkinson's, RA, IBS, migraines, CFIDS, ME, or Fibro
getting better.
Posted by Wimenin (Member # 15294) on :
..
To answer your question, the only people Ive known (and I know a lot who have had or are currently being treated for lyme), that have gotten better following the cdc guidelines are those that saw the tick, saw the bullseye rash, and immediately started abx.
All the people who were past the first few days... no.. they always needed more doses, etc...
...but since according to the cdc the majority of us dont have lyme....who knows... Posted by Lymetoo (Member # 743) on :
Adam is right!!
Many here received the standard treatment... to no avail. And what ID dr is going to prescribe one month of IV right off the bat? I don't know of any who would do that.
Most of the time, they give 200mg per day of doxy for 2 wks and that's it.
Doomed for failure.
Posted by cbb (Member # 788) on :
My experience: Relatively mild symptoms started 5 to 10 yrs after bull's eye rash.
In 1989, had 30 days antibiotics as recommended by the book my Dr consulted. Saw almost NO improvement, but by that time, I'd had Lyme 6 to 10 yrs.
Took three years, but found another Dr who gave IV for 30 days (symptoms were worse, but not as serious as some people have). Big improvement while on treatment and shortly after, but within a couple months, symptoms were back just as they were before IV.
Been on and off treatment since then. Also, diagnosed with Babesiosis and Bartonella.
My father's case: In the 1970s, misdiagnosed Alzhiemer's. In 1992, LLMD in New Jersey diagnosed Neurological Lyme and gave 30 days IV.
Due to numerous complications (no local Dr, ignorance of the disease and herx, too far to travel, his advanced age, etc, etc) treatment was stopped. His improvement was good, but in a short time, all improvement was lost and his condition deteriorated.
Could not find a local dr to work with us and several years later he died of complications of Lyme disease.
Grandson: In 1998, 8 yr old Grandson got Lyme and possibly Bartonella. Only obvious symptoms were developing ADD, major changes in eyesight, and mood swings.
About 2002, diagnosed Lyme. Had 30 days or more of higher dose oral antibiotics. Appeared to be cured, but symptoms returned.
About 2004, thanks to LymeNet, learned about Lyme Pediatrician in CT, who diagnosed Lyme Encephalitis and prescribed combo of oral antibiotics. He's now 16 and nearing the end of treatment.
What our family has learned.... The earlier the treatment, the better the results, but ONLY if treatment is strong enough and long enough.
Also, we contracted Lyme at different times and in different locations. Though there were some similarities, each case was very different.
I hope others will share their experiences.
Posted by Halbowitz (Member # 9541) on :
"And what ID dr is going to prescribe one month of IV right off the bat?"
Actually, my Dr did. I was just diagnosed. Positive ELSIA, WB, and spinal tap.
And im on one month of of ceftriaxone through PICC line.
Im pretty far along though as far as infection goes. Mostly all neuro. And not much, if anything has changed yet.
I was planning on continuing my medication (probably not ceftriaxone) after my month was up. Even if i have to go to a dif doctor.
But i was hoping to hear some success stories with the CDC guidelines.
Reading this board, and the replies to this thread, makes me think its rather a long shot.
Posted by smjkoj (Member # 15241) on :
Halbowitz,
This was years ago, but my dad got the bulls eye rash and was treated right away with 2 weeks of antibiotics by his PCP and has been fine since.
I must say I am concerned that it will one day rear its ugly head again, given the experience of my husband.
Don't lose hope. If your symptoms start reappearing after you finish treatment or the symptoms don't totally go away, get to a LLMD ASAP.
Smjkoj
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Halbowitz: "And what ID dr is going to prescribe one month of IV right off the bat?"
Actually, my Dr did. I was just diagnosed. Positive ELSIA, WB, and spinal tap. =================
Reading this board, and the replies to this thread, makes me think its rather a long shot.
I would think you only received that treatment because you were lucky enough to have a positive on all 3 tests.
Most ID's try very hard to prove the patient doesn't have Lyme and thus order a spinal tap. You're 80% likely to have a negative on the spinal tap for Lyme. [he knew that]
PLEASE find an LLMD right away. You don't want any down time after those first 4 wks on IV.
At least make an appointment now, in case your ID dr refuses to treat further.
Posted by hcconn22 (Member # 5263) on :
Not me- did not get better.
Also common IDSA guidelines really ignore testing or treatment for co-infections.
Posted by Hoosiers51 (Member # 15759) on :
My advice to you is that if you are going to continue after 4 weeks, do not miss one day....so maybe start looking for another doc at week 3 if you know your current doc won't keep going with it. Maybe ask the ID doc ahead of time if he would consider extending it if you are not feeling better yet.
I do know a couple people who have gotten better using the CDC guidelines, but they all caught it RIGHT away, like, within hours of being infected.
Posted by Halbowitz (Member # 9541) on :
dont know if continuing as soon as i finish my current regime is an option.
Dont have a doc who will do it in that time frame and i seriously doubt my current one will. Or anyone in my HMO for that matter.
I do have a LLMD who will be seeing my mid-late august and we already discussed meds. So i know he will treat me.
Not the best timing, but I think thats much better then nothing.
And its a good idea to ask my doc ahead of time (my current doc) if they plan on treating me after im done with the IV, regardless.
Ill do that.
Posted by cbb (Member # 788) on :
May be a good idea to check with the LLMD's office, too. See if this would have any effect on his/her treatment protocol.
Posted by adamm (Member # 11910) on :
I received the CDC-reccomended course of doxycycline right
fter my bite and it completely failed me, BTW, and I
would not expect their recommendations for IV therapy
to be any better.
Check around
here for stories about short courses of IV txment--the vast
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