Anybody being treated with antibiotics

[savagek]

I was diagnosed with MS, and recently diagnosed as having Lyme disease (positive western blot).

Is anyone being treated with antibiotics, IV or oral treatments for Lyme and/or MS?

And also if you are being treated with antibiotics, which doctor do you have - Neurologist, Lyme Doctor, General Practitioner?

Also, is your treatment covered by your Insurance?

Please let me know and thanks for your help,

Rob

[Quixotic1]

I did finally read your response to my warning - and it was in character.  I have not read what I presume is a storm of "them and us" which has followed, but you asked a question and I will try to answer it.

When a doctor perceives that a person is no longer interested in their input, they should bow out.  My energy is very limited, and I feel I wasted it on you.

The more I tried to warn you about this doctor,  the more entrenched you became in his recommendations and care.  It was clear you were not sharing my concern.  Yes, I began to believe (and still suspect) that this whole deal was a set-up to point out a case of Lyme misdiagnosed as MS.  Whatever, that point is now well-made.

If you are for real (and spare me the angst of how you are "simply looking for answers") then you need to realize that Neuroborreliosis is a serious brain infection and should be treated aggressively.  Conventional and Lyme experts agree that proper treatment is high-dose IV meds.  Distressing side effect to this therapy are expected, should be counselled to the patient and should also be treated aggressively.   I have treated many cases of brain infections, from neruosyphillis in babies to fungal brain infections to bacterial meningitis so I speak from a very educated experience.  Managing the side effects so that the therapy can work is the doctor's job.  Many treatments are not expected to be a walk in the park.

If the patient cannot be helped to tolerate the meds they need so badly, then a change is made.  This change ideally needs to be as effective as possible for this brain infection.  The next antibiotic recommended if ceftriaxone or cefotaxime can't be used is very high dose IV (intravenous) Penicillin G.  It should also be used for a minimum of 14 and up to 28 days.  Penicillin is a narrower spectrum drug and usually is tolerated well in extremely high doses.  This info is easy to find and your "poor badgered" doctor could have found it as easily as I.

The last thing a serious physician, treating a serious brain infection, would do is say, "Well, you have distressing side effects, so I will downgrade the aggressiveness of my therapy, so you will tolerate it better."  Nevermind the fact that the therapy he changed to has been shown for decades to be insufficient to effectively treat an infection deep with the brain.  You will be more comfortable, but your brain infection will be inadequately treated.

I seriously don't think you want to hear what I have just said, as you interpreted my previous post as simply "badgering your doctor."  I spent at least an hour of reading yesterday (which causes me a huge amount of visual fatigue) to ensure that this was sound information, from BOTH SIDES of the Lyme dabate.  Yet, it was completely lost on you.  I do feel I have wasted my time - and still am - in trying to give you good info.  

That, Rob - is what I was trying to do.  You were offering descriptions of his plan of care.  I thought it was for my - yes, VERY educated and knowledgable - opinion.  (my resume IS impressive and includes post-doctoral work in Immunology.  A little horn toot here, I was the first Pediatric AIDS Fellow in Los Angeles.  I know what I am talking about and when I don't, I say so)  I was spinning my wheels trying to get you to competent care.

Your assessment of my efforts was that I was just trying to run down some unknown practitioner?  THAT IS offensive!  So I guess, despite my apology, we are even in some childish scoring system.  Please do not prolong this with an apology - genuine or not.  I begrudge every minute I spent trying to give you the best information I could find.

You need to go some place where they will applaud your every decision.  I am done with you and you should be done with me.

[sojourner1]

Hey Mom---it's sweet that you missed me ;-) really!

Ok, so I guess you guys know everything about everything already.....and that's good. Maybe you could let others read a little bit about something that they might not know about and occupy yourselves elswhere on the forum. You sorta sound bitter.........and Mom, why do you keep saying your "outta here" but you keep coming back even when noone is addressing you?..........strange.

[Momzilla]

Once again, Carol is the one making the most sense!  

I just had a feeling we'd be hearing from sojourner.

Once again, I knew I'd be misquoted by tory.  

Once again...I'm outta here.

[grannyhotwheels]

This is like trying to change a Missionary Baptist to a Holiness!   Yes?  
You need to believe this way to get to heaven says the baptist
no,no, you only get to heaven by believing this way. (Holiness)


lol lol lol lol
Carol

[sojourner1]

First..a disclaimer.....I am just commenting here because I saw Rob's post on another forum and a reference to info that was given him on this forum......so there is no great conspiracy in my posting and I do not personally know any of the parties involved.

Kristin,
I partially agree, I think Rob has gotten some good advise here but it would serve him better to ask on a good lyme forum......however, and this is the important part!!!!

Rob was diagnosed with MS but has found out that he has lyme disease. This is important info to disseminate to people with MS. This also happened to my husband as I know it did to tory too.

And finally, a note about lyme treatment....just like in MS there is not one protocol of treatment for everyone.....Some MSers do great on interferons and some suffer terribly, etc. Same for lyme. There are no absolutes. For example, my husband has late stage neuro lyme and has never been treated with IV antibiotics...He is doing quite well on orals. If at some point our doc thinks IV might be a good idea than he would use it.

I would like to think that everyone who wants to participate would be welcome here........even though their experience with MS is a bit different-------you might actually learn something.

[floridamom2]

Here's what I think would be best for all concerned - since there is a forum for Lymes disease on this website and you both agree that you have Lymes disease and not MS then why don't you continue your conversation over there.  

I am not trying to say don't come here - just maybe everyone would be more comfortable in their own corner of diseases.  I appreciate the information about Lymes disease and before all these hostile conversations started many new people were told to be checked for it when they started with symptoms but had no clear diagnosis.  

I think that the majority of us here at this point are here for the commradery (?sp) and support, not necessarily the "what do you think I have" scenarios.  We are all open to finding out what may be going on in our particular situation and that means keeping an open mind and trusting what people have to offer.  I don't think that is what is going on in these conversations.  

I may not make any sense - honestly right now I am lucky to be able to type.  I know these exchanges are making me and alot of others here uncomfortable and we would just like to be the great little support group we used to be and stop feeling like we need to protect those we love who are being treated unfairly.

Enough said  -  Good luck to you both and I will be praying for you!
Kristin