Topic: I am going to an Infectious Disease doctor tomorrow
WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
Yes, that's right - after four years of treatment my ILADS LLMD is sending me to an ID doctor. Not for Lyme, he's sending me because I have ongoing issues with chlamydia pneumoniae.
I'm going to go, but I'm dreading it. From what I've read of CPN, it can go chronic (which I'm sure is what happened with me) and needs long-term combos of abx. Just like Lyme.
And how can we realistically discuss my health without mention of my chronic Lyme and the effects that's caused? This guy has awful online reviews too from Lymies.
Having flashbacks now to the last time I saw an ID doctor. Is there any hope this guy will be able to help me?
Posts: 1737 | From Virginia | Registered: Aug 2011
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posted
I think I'd better pray for you. Why can't your LLMD take care of the CPN?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
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posted
- Q: You ask: How can you discuss even chronic lyme with an ID doctor?
You just cannot.
You might as well ask how you can get a auto mechanic to turn your car into a hot air balloon. It's not what they do.
You would go to whoever works with hot air balloons.
Still, as chronic lyme may slip out, be prepared to be blamed for still being ill and maybe for taking too many antibiotics for too long. Just be prepared.
So, you then be prepared to ask if he can find out what IS going on and maybe finding the right medicine that will directly work. Do not say "antibiotic" say "medicine" -
- you don't want this doctor getting the sense that you are "antibiotic seeking" (as they accuse many with lyme) but that you just want to get better and you seek his advice on how to do that.
You are walking into an office of a doctor who others with lyme say is not suited to their needs. Why? Oh, why? Unless, only:
If you have an acute case of Cpn right now, an ID doctor is likely to treat with just one Rx for about a week or two. If you even mention the possibility of becoming chronic, you will be dismissed.
You will have better luck if you approach it with the thinking that whatever is going on is not being resolved and you need it resolved.
So, if a current acute case, see what they will do now but no not expect them to think beyond their tight constraints. This is not what they do. It's just not.
ID doctors do not believe in chronic Cpn nor are they willing to treat (at least for 99%).
Really, it's best to locate a doctor through the CpnHELP site. CpnHelp is to Cpn patients as ILADS is to those with lyme, TBD.
[ 07-15-2015, 12:15 AM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- Even if for a current acute case short term, in case this category of Rx is offered, best to have this information on hand for your decision process:
Fluoroquinolones (Levaquin, Cipro, Gemifloxacin / Factive, etc.) - LINKS set
For a more detailed look into this topic, it's alarming that so many have experienced devastating effects. It's not unusual at all. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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- Well, good luck. Hope you can go in without expectations or prearranged agenda -- and present the situation and let the doctor do what they do and maybe get an answer that will allow for a perfect solution.
One can hope, eh? -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Did your llmd recommend them?
Posts: 832 | From Somewhere | Registered: Nov 2010
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randibear
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posted
good luck...
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Tincup
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posted
You need a safety pin, a black magic marker, a string about 2 ft. long and an 8 x 11 sheet of construction paper.
Put two holes in the paper on the long edge, about 2 inches from the edge. Thread the string into the two holes and tie the ends together.
On one side of the paper write in big letters "KICK ME". On the other side write "KISS MY GRITS". When you go in put the string around your neck with the KICK ME side of the paper facing outward. When you leave, flip the other side outward.
Hey, they are already going to think "crazy" when they hear the word Lyme, so might as well do it right.
posted
How did it go??
Posts: 123 | From Washington State | Registered: Dec 2013
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Keebler
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posted
- If not well, remember that it's natural (even if not wise) to want to try to make someone into who we want or need them to be for us.
When we can really see others for who they are and, in a professional role in terms of their set beliefs and parameters, it can help us figure out how to best work with them within THEIR bounds . . . if that also works for us in any way - or not.
And, if not, then to seek out those who do have fuller education, expanded awareness and skill required of the issues at hand. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
How did the visit go with the dark side of the force?
-------------------- Lyme flare June, July, August of 2013. Diagnosed September 2014 Lyme, Bartonella, Mycoplasma, Mono Posts: 595 | From Texas Crossroads | Registered: Oct 2014
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WPinVA
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posted
Thanks for all the support! : ) It could have been worse.
Yes, my LLMD did recommend him, so I was upfront that I have chronic Lyme as background, but didn't dwell on it. He didn't lecture about it. It wasn't the focus.
Re: the CPN, he provided some useful info as to which strain I have and which antibiotics will best hit it. That was actually useful. And he had reviewed all my labs ahead of time in detail, which was refreshing. He wasn't unpleasant.
However, as to treatment, he is unable to think outside of his narrow ID doctor box. He said that even though I have been dealing with CPN on and off for a full year now, that it isn't chronic and I must be getting re-infected from my kids.
I showed him literature - studies in PubMed - about how CPN can become chronic and require long-term abx in combos. His response: "I'm aware that there is literature on this but that hasn't been my personal experience. Abx combos are outside of my comfort zone."
I explained how I have low immunity and chronic Lyme and have a lot of trouble getting over things. He still said three weeks of the right antibiotics will do it. Not that I really expected anything different, but I had to try while I was there.
So in the end, I got three weeks of minocycline for the CPN, and if that doesn't work, I'm supposed to take levaquin, assuming cardiologist ok's it.
Not planning to go back. I think I got all the useful info I'll get out of this guy, and I can follow up with my LLMD to see if he'll implement the protocols on CPNHelp if that's what I end up needing, or point me to someone who can.
Keebler, thanks again for the link to the CPN website. It's really striking how much that echo's Lyme.
Posts: 1737 | From Virginia | Registered: Aug 2011
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Tincup
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posted
The Infectious Disease doctor said... "Abx combos are outside of my comfort zone."
WHAT? He is supposedly a "specialist"! He is suppose to know this stuff inside out and be able to deal with it!
Argggggggggg!!!! Don't know how you could sit there and listen to that hooey.
Do you think Mr. Mushy Pants would be more comfortable handing out lollipops for chronic infections? Sounds more like his style.
jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
Do you have kids? Is it possible you are fighting a reinfection every so often? That would explain the low immunity and your inability to recover from anything else.
I didn't realize cpnhelp had docs. I may look there myself.
Good luck and I'm glad your experience was not a typical ID doc visit.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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quote:Originally posted by Tincup: The Infectious Disease doctor said... "Abx combos are outside of my comfort zone."
- that really was kinda funny! Sheesh
Glad you got a little info from this guy .. hope he didn't cost you more than nothing.. .. hahaa.. certainly no more than a low copay!?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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WPinVA
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posted
Haha, on the lollipops comment. : ) My spouse pointed out that at least he was upfront with his limitations.
Yes, it's certainly possible that I'm being reinfected. The thing is... ID guy was hostile to the concept of chronic CPN infection so I don't feel I can trust his assessment.
I guess time will tell. If I can shake this with the antibiotic he is prescribing then it may have been a re-infection. If not, at least I know how to treat it - thanks to Keebler and cpnhelp protocols.
Posts: 1737 | From Virginia | Registered: Aug 2011
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Phoiph
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Although I realize in advance that my comments may be terribly unpopular, it was disturbing to me to read the comments in this thread.
We all understand the problems with ID doctors, but is it really appropriate to bash this guy (even before he was seen) on this forum in a way that would be grounds for banning if it were done regarding any LLMD (even an incompetent one)?
I'm surprised and disappointed that moderators would allow comments like these and name-calling when the forum rules clearly state otherwise.
It doesn't gain any points or respect for the Lyme community, either. There are more effective ways to state an opinion...
Posts: 1885 | From Earth | Registered: Jul 2013
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posted
I suppose we could discuss it a little more, re our etiquette here, but my experience also has been pretty horrendous with ID docs, a couple of them.
It's the experience of being completely dismissed, no matter what we say. So I think we're all pretty pissed off about it. LLMDs don't behave like ID docs.
Ok - here's a question - how would you interact with ID docs and other docs who don't believe in doctoring for Lyme and co's? And how would you suggest we talk about it?
Posts: 13116 | From San Francisco | Registered: May 2006
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WPinVA
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I personally didn't feel anyone's comments were inappropriate.
After a terrible experience early on with an ID doctor (different one) and a general understanding of the field's limitations, I was nervous to go to this appointment.
I appreciated that others here could relate. If we can't vent here and joke around a little, then I'm not sure where we can.
Posts: 1737 | From Virginia | Registered: Aug 2011
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Phoiph
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posted
My point has nothing to do with how bad or good ID doctors are at their practice; I am not defending them per se.
I am pointing out that there is a bias here when it comes to how the rules of discussion here are enforced.
I have not been allowed to talk respectfully about any negative experiences I may have had with LLMDs, without mentioning names, even if this information is solely intended to help or inform the next person (my posts have been deleted and I have been threatened with "banning").
I don't think name-calling anyone is productive discussion, under any circumstances. It simply lowers the bar for the credibility of the site and the Lyme cause in general.
I believe respectful discussion and opinions of every kind of doctors should be allowed here, whether positive or negative...minus the insults.
These rules have been reiterated many times by the moderators...so why the double standard?
Posts: 1885 | From Earth | Registered: Jul 2013
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posted
In fact I posted a very positive response I got from my GP, which was unexpected. I don't think anyone is biased.
I think patients have lost their patients with mostly dismissive doctors that prefer to think people are insane rather than help them.
They took an oath and they should be held to it. Despite what insurance companies attempt.
-------------------- Lyme flare June, July, August of 2013. Diagnosed September 2014 Lyme, Bartonella, Mycoplasma, Mono Posts: 595 | From Texas Crossroads | Registered: Oct 2014
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Keebler
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- The issue of name calling is one that I think is important.
It's up to us to research any doctor beforehand to see what they have chosen as their mode of operation.
They choose to practice one way that does not work for us, then we just don't go to them . . . respecting their decision to ignore lyme while we choose our option to find a doctor who had studied it.
[Or, see them for what else, how else, etc. other than lyme or other chronic stealth infection and not hold unrealistic expectations, given their stance.]
Yes, there should be doctors out there who should do their jobs regarding lyme but right now, it's not going to do us any good to try to make a doctor who chooses flat out not to learn or address lyme - it won't do us any good to try to make them practice a way they refuse.
We must seek out those who do have a level of expertise that will suit our needs while we try to change the "system" with the help of groups like LymeDisease.org, LDA and ILADS, etc.
It is entirely possible to voice opinions without name called and honestly convey the detail regarding experiences, expectations, limitations, etc. with ID doctors and others who go by strict IDSA dogma.
To say that IDSA doctors don't "get" lyme or TBD and that they are not the kind of doctor to see if one is inquiring about assessment or treatment for any king of chronic infection can be said without name calling.
It can be harder to express - just as many comics have a hard time not using profanity - but we could try to tell it like it is while reaching a little higher in word choice, perhaps. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I personally don't think ID docs are worthy of our respect if they're refusing to doctor - they blatantly laugh in our face - should we defend that? I don't think so.
Phoiph, have you ever had an experience of going to one for help? I have, three times. They're not allowed to help us.
I think their licenses should be taken off the wall and the whole lot of them jailed for medical crimes against humanity. That's why I can't defend them.
Anyone else, ok, deserving of some respect. But not those sworn to deny us. Just my opinion. I'm sure everyone has theirs, and you also have a right to express your opinion.
Posts: 13116 | From San Francisco | Registered: May 2006
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Phoiph
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posted
Robin...
Yes, I have had negative experiences with infectious disease doctors as well as LLMDs.
Regardless, I think it is in poor taste and counterproductive to name-call either, particularly on a public forum.
My point was missed. As I stated, I'm not defending ID doctors per se. I'm looking at the big picture. As a group with a cause, I feel we have a responsibility to take the "high road" if we ever hope to close the gap between disciplines.
This means, if we want to continue to move our cause forward, no matter how unjustly we are treated, as much as possible, we continue to strive to advocate and educate...not alienate.
I also understand that it is easier to take this position when you are well. I'm not sure if I could be this philosophical when I was in the throes of raging Neuro-lyme.
Just my opinion; I also mentioned that it would likely be unpopular...
Posts: 1885 | From Earth | Registered: Jul 2013
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WPinVA
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Phoiph, I take your point as a matter of advocacy and I agree in that forum it's better to take the high road. If this were a more public statement, I would absolutely agree with you.
But this is a members-only support group. I think we have to be allowed to vent a little on here when our needs are not met. Where else are we allowed to vent if not in an Lyme support group?
Posts: 1737 | From Virginia | Registered: Aug 2011
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Phoiph
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WPinVA...
Point taken...I am all for venting, support, and freedom of speech! However, LymeNet is not a "members-only" forum, as you mention, it is a public forum...you don't have to be a member to read anything that is written here. It is part of the world-wide-web.
This is one of the reasons why it is not allowable to use an LLMD's name in the forum; the information is public.
What we write here can have far-reaching implications. For example, I have had people from all over the world who have never heard of LymeNet contact me through the forum, because they had Googled a subject or keyword (e.g. hyperbaric) and pulled up LymeNet posts I had written.
The bottom line is that name-calling and insults are clearly against LymeNet rules. Arbitrarily applying these rules takes away from the quality and credibility of the forum, in my opinion.
Again, this is my observation and opinion only...I'm not expecting anyone to support it...
Posts: 1885 | From Earth | Registered: Jul 2013
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Keebler
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- ". . . this is a members-only support group."
Not really. This is a public forum. We are in public. Very much so.
Still, my thoughts on name calling may be a bit different and that statement may sound like "tone it down" whereas I'm trying to say that we can "be more specific"
Rather than calling someone a schoolyard bully, to honestly acknowledge that the IDSA stance towards those with lyme has displayed staunch arrogance is a matter of fact, backed by the experiences of hundreds of patients and beyond.
To say there is a dangerous and, yes, even criminal level of medical negligence among most IDSA leadership (and many of their members) regarding lyme is also an honest assessment - again, there are personal experiences and articles that back the fact.
There is no schoolyard nickname that can be more specific than that. The truth is stronger.
The works of Lorraine Johnson of LymeDisease.org (most specifically, her IOM address a few years ago) as well as the work of LL journalist Pamela Weintraub back up these statements and shine light on the truth. -
[ 07-19-2015, 01:30 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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WPinVA
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Now I really think we are quibbling.
Yes, I know it's on the web and perhaps you can quibble with my choice of words. My point is... it's not like anyone on here was writing a newspaper article calling anyone a name. They were simply supporting me when I posted in an support group.
No one mentioned this doctor's name or even initials. No one on here even knows who it is except for me!
While I may not have chosen to use the language some other members did, I appreciated their support and that they "got" my frustration. Coming down on them too hard creates a chilling effect and maybe they won't speak up next time. That would really make me very sad because I've personally benefitted so much from the support on here over the years.
Posts: 1737 | From Virginia | Registered: Aug 2011
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posted
There is no name-calling since the person is not a member, was not named, is not even here.
Don't be ridiculous.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
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posted
- WPinVA,
your posts were not the ones that Phoiph was talking about. Sorry if my comment about this being in full public view was not phrased quite right, either, still it was in general, not specific to anything you posted.
LymeToo's note about no one specific has been called a name is true, of course, as the names called referred to most ID doctors in general.
Still, it does seem that we are all just trying to get to doctors who really know what they are supposed to know and when they don't
and when we are abused as patients to voice concerns however best we can. My concern is that whatever words both patients (& the public who may venture here) sees here, I just hope they understand it's not just fluff but based on facts & experiences that are very real, life altering real.
Another way I might look at some of the generic IDSA "minded" doctor name calling is that editorial cartoons and some of the best humorists can make important points with a laugh. If the shoe fits, sort of thing, I suppose. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Well, it's an interesting discussion - my opinion is that there's nothing we can do at this point to get these folks to change their politics regarding us, so I don't see what the point is of taking the high road with people who could care less about our lives and whether we live or die -
no, I don't feel like being nice to that point of view. I'd like to call a spade a spade and say it's unacceptable behavior. I don't think I'd be nice to a Nazi either. Etc.
Maybe we're going to need to wait until the politics shifts a little more? Like if we're able to get the Congressional bill through, get more funding, get more recognition, then maybe the naysayers are going to have to come around as they realize they're being left in the dust as the truth comes out about these illnesses and the need to treat us adequately.
Posts: 13116 | From San Francisco | Registered: May 2006
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WPinVA
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posted
Getting back to the original point of this threat - which is treating the CPN infection... I have been on mino for the past week. Lung sx are improving.
However, now I'm unsteady on my feet and kind of dizzy. I have this strange full feeling in my head. After reading up on minocycline, I think this may be a side effect of the mino?
I hate being so sensitive to all of these meds. Wondering if I push through if this will go away, or if I need to stop it?
Posts: 1737 | From Virginia | Registered: Aug 2011
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LisaK
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see, I would be the dumb one that would do exactly like the ID says to do and then go back to him and prove he is wrong. if indeed he is wrong.
that would be me. just to help him learn and see how wrong he is, if he is indeed wrong.
I did this with a big time dr once at big university hospital for GI issues. he, like most GI drs didn't believe in food allergies or that food can actually make you feel sick when you eat it without giving you hives or the runs.
we got along, and I play dumb most of the time at drs offices and they usually like me unless I turn on my mean switch. which I only do when I am desperate or when I was bart crazed, haha.
most people in the world, including stubborn drs, will not push away intelligent thinking if it's done with a special touch. it's kind of like being a dog whisperer.... hah. Dr whisperer.....
it takes time and extreme patience for sure. which many ppl do not have. especially tick disease ppl
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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Keebler
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- You say you are dizzy and have balance issue with minocycline. That makes a lot of sense. Sorry, but at least it tends to be what many drugs that affect the ears do, too.
You may need different liver support to help your ears - to protect against the ototoxic properties of minocycline.
For some, that passes or improves. Some cannot tolerate minocycline, though, but the most important thing is that
liver support MUST be as good as possible to help protect ears / inner ear / vestibular system from damage. Do not push a harsh detox, though, it needs to be very good steady liver / kidney support.
B6 seems to also help. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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- You can read more about minocycline and the inner ear in the Tinnitus thread that is within this set, too:
LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- Even when taking the necessary liver support, Be EXTRA protective of your hearing while taking any drug that is ototoxic, and for a couple months afterward, too. That detail is in the Tinnitus thread, too. -
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WPinVA
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LisaK, I would love to do that... there are so many doctors who have misdiagnosed over the years.
Just don't have the time or energy to focus on them. but happy you are willing and able to do this!
Posts: 1737 | From Virginia | Registered: Aug 2011
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posted
Well...we went to an ID doc who was helpful and knowledgeable, and prescribed abx long-term as well as supplements and dietary adjustments. You just never know who is going to help you out.
Posts: 228 | From Mass. | Registered: Feb 2009
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Keebler
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- Richard,
Good to know. There is the hope that some will be learning more and changing - yet so far, very few and far between. You got lucky.
Also good that supplements are included as liver protection, probiotic use, etc. is just essential to any treatment plan.
However, so many of those with lyme have been just crushed by various "specialists" of ID doctors, rheumatologists, neurologists, etc.
so, as a rule, it's just really important to try to research the doctor before just going in cold and expecting them to know what we need them to know.
I hope you've shared with ALL your area lyme support groups your experience so that more will have a better chance. And this gives them the detail as they research their options in advance.
Do be sure your doctor knows about the various approaches by ILADS' doctors, presenters, authors, researchers and offers a
COMBINATION, ROTATION and address all forms of lyme (not just the spirochete form). Other kinds of Rx are required, not just antibiotics.
And also that your doctor assess for other tick borne infections.
It's not enough to just offer antibiotics, even if for longer than the IDSA would typically allow. I hope your doctor is on board with all that and the work behind it.
I really hope more and more ID doctors will change from blindly adhering solely to IDSA and get to know about ILADS' approaches. -
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