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

[savagek]

Thanks so much for the reply!

I agree chapter closed.

I am sorry to hear about your situation and I wish you the very best.

Thanks,

Rob

[Quixotic1]

I just felt calm enough to read through this horrible mess.  Rob, I did not realize that you apparently did not know...Yes, I am an MD.  I practiced general pediatrics in poor and rural areas for 23 years.  I also trained  briefly in Infectious Diseases and did my post-doctoral Fellowship in Immunology at UCLA, serving as the Pediatric AIDS Fellow.  I was disabled by Autoimmune Inner Ear Disease in 2001.  I had my first symptoms of MS in 2004, diagnosed this spring, and I have been studying intensively on MS for the last 8 months or so.  Fatigue and difficulty reading (tracking with my eyes) have been my biggest enemies.  I now understand your query of whether I was "a doctor or what?"

As to my motives in finding and giving you the most up-to-date medical info from REAL experts in the fields of Lyme and Infectious Disease, because I CAN search the medical literature, read and understand it; I did it to arm you with facts.  I hoped you would use those facts to evaluate your very charismatic doctor.  You indicated that insulting him, rather than helping you, seemed to be my goal and, yes, that offended me greatly.  I may be many things, but mean-spirited is not one of them.

I accept your apology.  Now, lets close this chapter.  Quix

[savagek]

It is an analogy of the whole thing. I know I am free to use this forum, but I do feel I lost some friends over this, mainly you, the one who has helped me most. This has had horrible repercussions which I did not expect or intend.

I sincerely do apologize.

Rob

[Quixotic1]

Don't be ridiculous.  This is a public forum.  No can be Banished.  Anyone can talk - or not - to anyone else.

[Momzilla]

I'm sorry I acted so childishly.  'Political diseases' bring out the worst in me.  

I wish you the best, too, and good health.

Chris*

[savagek]

I have been Banished, Sent to jail for a crime I did not commit, I feel like I lost some good friends.

I wish you all the best,

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

[savagek]

Yes, I have only had 3 treatments of the IV Rocephin then got put on the oral treatment.

This kind of stuff I do not understand, is this another argument starting. This is why I chose to talk mainly about certain subjects with certain people as you can see some people just join the post to argue!

Have a great day Tory,

Rob

[tory2457]

Zilla,
You've gotta be joking! This is serious; this is Rob's health!

firstly, Rob said he had 3 treatments......

Rob? Did you have 6 weeks like MomZ states?

and no,
I don't know Rob, only through the forums.....I do know that the doc he currently has is considered a good doctor; I can only hope gives his lyme doc a chance...

[Momzilla]

What is a "political disease?"  

Is this a planned script?  Do you two know each other?  It doesn't seem like Rob has had enough time to have been treated with the IV drugs.  Six weeks.  This seems so hokey all of a sudden.

I'm out of here.

[savagek]

Hi Tory,

As you know Quix has helped me a lot through my MS and Lyme problems. But you are right I do need to broaden my investigating at this point and get more information and opinions.

Thanks,

Rob

[tory2457]

I've been away since early posts yesterday...I started with a reply and the doorbell rang.
Then, the above couple of posts came in..

Can I please say this:

Rob, like myself is confused and scared!   He now has 2 diagnoses...A neuro said it's MS and a Lyme doc says it Lyme..well the CDC even agrees with that,,,anyway

I don't find Rob asking for an opinion from Quix to be rude, nor did I read Rob stating her advice was bad. Rob is doing what we in the Lyme community want him to do...ask questions, check things out,,and ask some more.

Rob and I also a part of this community; whether you like it or not--and no fault of our own....so please do be nice; we didn't diagnose us with MS..ok?

This whole disease (lyme) is a tough one..

There are 2 very different approaches to treatment.

One is the IDSA
The other is ILADS.

Quix stated above correctly according to the IDSA guidelines....

Rob however will be treated and has begun his treatment with a doctor who will use the ILADS guidelines.

The IDSA doesn't recognize " chronic Lyme".  and only treats for 6 weeks. re-treats later if nec,,See Quix's remarks)

ILADS treats until symptom free: they do use abx that crosses the BBB - they treat lyme in it's cyst form.

So, Rob expect to get a point of view from Quix that reflects the IDSA guidelines. And she's correct when she says that IV is the drug to use for early infection..

you however are past early infection;

So, an ILADS doctor will interprete your treatment differently.
This is why LP's don't do a good job in detecting spirochetes; they change into a cyst form quickly.

I don't think this is the place to discuss all of this; so I will say this to Rob

With Lyme disease the reality is you the patient should read and understand all that you can about this political disease.

Getting back to your change in meds:

imo, this change might be simply because you have a yeast problem,,,,,and you were also on steroids? You obviously reacted to the IV so your doc changed your meds..Very common. there's another gal with a MS diagnosis ( now has Lyme) and her Lyme doc wouldn't start her on any abx because of her yeast problem,,,,a bad yeast problem. She needs to clear that up first....then she'll begin treatment. IV I think...I didn't start with IV, but again each of us is different, and lyme docs treat us differently.

You Rob have both yeast and just got off steroids...The amoxy, flagyl and probiotic is a nice easy way to get you on tract.

Thanks Quix for your research and time, but Rob you need to understand that is only 1 point of view.

[savagek]

I hope you know I respect you and very much appreciate your help. I chose to cumminicate with you as you have had sound logical advice. I really wanted to know if you are a doctor as it would not surprise me. Please understand me as things are getting very mixed up here and I cannot believe I am getting defensive, this truly is not my way or my intension. I am a simple person not knowledge on either subject at all.

If I have offended or insulted you Quix, I am very sorry!!!

I also appologize to Penn, grannyhotwheels, and Momzilla. Sorry if I have offended any of you!!!

Thanks,

Rob

[grannyhotwheels]

Please, if you will ready my post again I never said that you insulted Quix, I said that you seem to always want to argue with what she has to say.

Chris is right in that we are all grown ups here, lets act like it.   I'll go first,:
I am very sorry if I have offended you or anyone else.  Sometimes I let my emotions speak for me and maybe I should'nt.  Please lets all be one big happy family and move past this.  I hope that you will except my apology for possibly offending you.  I still think you want desperately to prove Quix wrong on all of this but that is my opinion so please do not take it personal.

I'll be praying,
Carol

[Momzilla]

"Are you a doctor or what?"  WOW!!!!!

No, not insulting whatsoever.

We are all reading your posts carefully with great interest.  We are concerned about your health and want to learn more about Lyme.  It's crazy how, when the subject of Lyme comes up, the boxing gloves come on.  

Quix is giving you excellent information.  You do not have to listen to her.  She is NOT your doctor. She is one of the members of our forum here who deserves some respect.  Just like you do.  She is doing her best to in form and help you.  She did, in her passion, once, insult you, as you said.  She apologized, as you said.  Grown-ups do that.

You have insulted her.   Own up to that.  We can get past it.  We are a family here.  Family members sometimes squabble.  If you don't want to get past it, we don't have to.  Grown-ups sometimes choose that, too.

You called Penn and Carol 'nuts.'  Not nice.  Cool off.  We all want good health for you.  That's why we're here.

Feel well.  Let's move forward and onward.

Chris

[savagek]

I think you both do not know what the hell your talking about. Try reading my posts and you tell me how I have been out of line at all. You guys are nuts.

Again, I have never ever once insulted her at all or have intensions of arguing just clarifying and trying to understand this. For the record Quix has in fact insulted me and appologized for it, not me insulting her. Again, try reading my posts and you tell me how I have been out of line at all. You guys are nuts.

Quix knows I respect her and very much appreciate her help.

WOW!!!!!

[grannyhotwheels]

I totally agree with Penn.  Why do you keep coming back to Quix if your only going to disagree with what she is trying to tell you?  She is and has done extensive study just for you and you still seem to only want to argue with what she has found out for you.

Quix is only after you best interest, as we all are.  We all are here to help each other, not fight.  Everyone here wants you to get better the same as they would want me to get better.  Can you not just listen to what she is telling you and ask you doctor about it?  Is that to hard?

Rob, I wish only the best for you but you seem to enjoy this little game your playing with Quix, and I for one wish it would stop.  She does not need the added stress in her life.  

I'll be praying for you,
Carol

[savagek]

Well, Obviously you missed my point and you do not understand me at all. I am clearly, clearly seeking her advice and everybody including her knows this. I am trying to get through to that and understand her at these certain points. We have been here before.

I have never ever once insulted her at all. But, it is nice of you to step in this post at this point.

Thanks,

Rob

[pennst8r]

If you feel that Quix is giving you bad advise, why do you keep coming back tp her??? Shame on you for being so ignorant to someone who tried to help you when YOU asked her for help. If you like your doc and agree with the treatment, then why continue to ask Quix?? Ask your wonderful doctor. Quix has always prefaced responses with the fact that she is retired and that neurology is not her specialty, but she will help as she can. She has never tried to represent herself as something she is not. She has done alot of reading to help answer your questions, and you insult her. There really are lyme forums, you know. I'm really tired of Quix being badgered by people who are only trying to set her up.

Penn