He didn't say that when he saw my wife the third time, but he mentioned that she might benefit from getting a second opinion from Dr. R on the east coast for her neuro symptoms.
He was putting it very carefully and with no hesitation that he would continue to see her as patient, and reminds confident that she will recover, though he says that in his practice, he thinks neuro Lyme is much harder to beat than other forms.
I was very encouraged at his office, but then after a few days, I am hearing second voice from the visit.
I would very much love to know what you hear. Thanks.
Posted by wtl (Member # 19883) on :
I am not sure if this is relevant, but he started her with levaquin for Bart, and will add high dose rifampin after two weeks. He says that Dr. R would want her to try levaquin first anyway, and there is no sense to see him without the initial treatment with this protocol.
Posted by lymie tony z (Member # 5130) on :
It does'n sound as if he's running out of options at all...as a matter of fact it sounds like he's just starting out....
What was your wife(if at all)diagnosed with?
It's been previously suggested that any known or symptom indicated(clinical diagnosed)babesia or bartonella(like)infestations be dealt with prior to anti-spirochetal anti-biotic treatments...
I believe so the smaller spirhchetes have no zoological hosts to imbed themselves in for hideing from antibiotic treatments...
Neuro lyme may very well be difficult due to the fact that not many antibiotic molecules are small enough to penetrate the blood brain barrier...
unlike the spirochetes themselves...either getting through due to passage up thru the
spinal collumn....csf or however else they're able to get thru the bbb!
?? zman
Posted by wtl (Member # 19883) on :
Thanks, lymie.
She was diagnosed with Lyme and co-infections last April, and has since been treating for Lyme only, I believe (not all from the same llmd). Now you mentioned about the beginning, he did say that. He thinks that the a year treatment for her is only the beginning, and he refers to say now that we have done all the homework and the real treatment is yet to begin.
Still it just sound discouraging.
Posted by CherylSue (Member # 13077) on :
Hang in there. I didn't start to feel better until I went through two years of antibiotics. It takes time....
Posted by wtl (Member # 19883) on :
Thank you, Cheryl. She needs that encouragement.
Posted by lymie tony z (Member # 5130) on :
There can be an almost instantaneous recovery from the "lyme fog" so many of us encounter with these diseases.
Usually from IV Ceftriaxone.
You should tell her to be very careful of Levaquin whenever she is
(if she is physically active),
due to the tendonitis and rupturing of the larger tendons in her body.
Connecting the larger muscles of her body to the bones.
Like in her legs, buttocks, arms, feet etc....
don't put too much strain on the body durring this particular antibiotic regimen.
There may or may not me lingering braincell dammage which some say cannot be repaired.
However I found this to be, for the most part false.
As I have not been TOTALLY cured as a nagging Encephalitis recurrs occasionally between antibiotic treatments.
I do believe I have recovered a lot of my previously mortaly wounded brain cells....
no matter what folks around me tell me....LOL!
Personality disorders seem to be the most affected area's of my brain.
I have gone however at my worst as diagnosed with schitzophrenia to now suttle to medium bi-polar disease.
You may be in for a long haul...
but should definitely feel (When your llmd hits on an abx that works in your wifes genetic
structure and or the strain or strains of Bb she may have)
a lifting of the "Black Vail" from off of her brains awareness and cognitive processes.
This should be a signal for you and your doctor to continue that particular abx or combo for awhile,
at least till it plateau's. Then switch to something else....
that either was effective previously or one that has'nt been tried at all so far in her
treatments. Don't forget the metronidazole which has been effective in breaking open the cystic forms of
these spirochetes they like to hide in whenever threatened.
good luck, zman
Posted by lou (Member # 81) on :
Lyme doctors are not all equally experienced, and it sounds like your doc wants someone with more experience on the team. That is not a bad idea. Don't know anything about Dr. R, but maybe you might ask your current doc why he thinks Dr. R is the right one. Good thing that your current doc is not dumping her. Having a local doctor on board is often important when you are consulting with a distant one.
Posted by Haley (Member # 22008) on :
I have severe neuro Lyme. Many doctors say when the brain is not functioning well it is probably Bart. I have found that treating Babesia has helped my brain fog significantly. I am convinced that it is Babesia that is causing the brain fog. It may be a combination of both.
Posted by wtl (Member # 19883) on :
Thank you.
zman - I believe her current doctor told her to be careful and she has minimum physical activities at this point. But thanks for the reminder.
lou - The current doctor thinks that Dr. R is knowledgeable with neuro Lyme and he thought it is good to get him on board before an more aggressive protocol is set up. He thinks he could personally get her in quicker than one would normally wait to see Dr. R.
Haley - I am fairly sure she has babesia as her current llmd confirms that, both through her tests and clinic diagnosis. I am not sure if her current med contains the right combo for babesia specifically but I do know the combo is designed to target bart. and Lyme.