Esp if you are having them monthly .. right along the life cycle of the keets.
I herxed for 2 yrs... then it died back a bit.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96220 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
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posted
- Herxing can last all the way through treatment. All the way. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Most important information I gather from your post:
This doctor is not a "true" LLMD, ILADS "educated". Not at all, from the comments made.
Of course, a patient often has severe joint and nerve pain - for months or even YEARS during treatment.
Red Flag #1.
And, herxheimer reactions can extend far into treatment, months, even years.
Red Flag #2.
Beyond that, he seemed to not offer what ELSE could be going on (either instead of or in combination with herx) - or suggest solid support measures to ease symptoms.
Red Flags #3 and #4.
I assume he did not even mention Porphyria or KPU / HPU or MTHFR / Methlation issues as you did not mention that.
Red Flag #5. (a good LLMD will know about those liver metabolism conditions that interfer with the ability of the liver to "detox")
"isnt related to lyme. must be something else." (end quote) As you are still early in treatment, this is
RED FLAG #6 - X-Large -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- When you say he has come recommened by ILADS, do you mean the actual ILADS site or office?
Even if so, he does not sound like a well eduated doctor for anyone with lyme. So many things he says are directly opposed to all the ILADS lectures and articles I've read over the years.
The "list" for LLMDs is not all that formal. Any doctor can call or list their names as "treating lyme" and call themselves LLMDs but that does not make it so.
Now, sometimes - sadly - a doctor even recommended by ILADS or previously good can change his course. This does happen, for whatever reasons, a doctor may nearly "flip" his thinking and treatment patterns.
This could be the case here, too. Pressures from the IDSA, etc. are the usual force behind such changes.
But, he is flat out lying about how all the other LLMDs say herxing can't last beyond a few months. That's a flat out lie.
I'm not sure just what conferences he's attended but not ILADS. This I know.
Even if said in ignorance, it's still false. He may really believe that but it makes it no less false (even if not an intentional lie). -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- A good, "true" LLMD will offer detail such as this (although some may be fearful of treading into this too deeply, a good LLMD will always detail at least basic liver support):
posted
My guess is that you can't detox the Lyme antigen. Have you had the HLA DR test done? It's through Labcorp.
You will find out from that test if you can detox Lyme and Mold. The best thing to take for this situation is Cholestrymine or Welchol. These are persciption binders.
I herxed on and on. It wasn't until I switched LLMD's did I find out what whas going on. I also can't detox mold, and I was living in a moldy house. We did major renovations last year.
What basically ends up happening is that the Lyme turns on the "sicker quicker" gene and then mold starts to give you the same symptoms as Lyme. Even after you get better, a mold hit will give you symptoms.
I don't know if you have the mold factor too, but it's something you need to be aware of. 25% of the population have genes that doesn't detox mold well, and 20% have genes that don't detox Lyme well.
Lots of us have both.
Posts: 845 | From Northeast | Registered: May 2011
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posted
thank you everyone for your responses. I am truly grateful. I will not be going back to him. He was recommended thru ilads website as one of the closest to me when i entered a zipcode search.
I should have listened to others on here that did not have good things to say about him.
he is the only one i had heard of here in tn.
i feel like I know more about lyme than he.
Fortunately I am taking my entire family (three kids and husband to see a dr. out of state TOMORROW! all of them are positive for lyme and I am hopeful that the dr. we are going to see WILL be the answer for all of us.
i made an appointment last month when my dr. said he didn't feel confident treating my child.
I should have known something wasn't right when he stated that he really doesnt know how to treat lyme and diagnosing it is hard too.
He really need to throw in the towel and stop wasting people time.
This illness already makes me feel NUTS and after today-I felt REALLY NUTS! thank you all for your help.
thank you for letting me vent.
Blessings
Posts: 14 | From tn | Registered: Jan 2013
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Keebler
Honored Contributor (25K+ posts)
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posted
- Being one wanting to erase the stigma attached to chronic illness, I wonder if it might work to trade out the word "nuts" and use "frustrated" (or a similar word)?
The reason I think it's important just to never - ever - refer to even feeling "nuts" is that it does impart that (if that's the correct use of that term). It labels us in our minds, somehow even if we know we are sane.
It also has that word becoming comfortable in our language and we will use it with others - even doctors. I have. I recall (now aghast) that I actually asked several doctors along the way if I might actually be "crazy" - and they all said "yes, indeed."
Bad, bad move. Even to say, "I'm not making this up." Or "I'm not faking this." Or "I'm not crazy." Or "it sure can make one feel crazy."
The brain only sees person and hears "crazy" or "lazy" etc.
But back to why I want to stomp that out of our vocabulary, even if the word "not" is used or later it's proven that "nuts" is not at all the case, it's still in the minds of others.
When the brain hears "nuts" and sees a person, the brain does it job. It labels the person. It's how the brain works. Very literally. The brain does NOT recognize NOT. It recognizes the term.
And it just also gives a bad name to those good souls suffering from all aspects of brain illnesses.
There are not enough words that readily come to mind but "frustating" or "frustrated" is the closest non-swear word I can think of as to a "safe" term to use with others when describing how this goes.
"Dizzing" or "Twilight Zone" often come to mind, too. "Mind warp" seems to work well for some instances when recalling treatment from mainstream medicine. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96220 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Really, I don't mean to be judgemental (I know my intent gets lost, though). Rather, to help us not be labeled when we use that term about ourselves.
And, maybe I react when I see such terms used because I still hear in my mind all the doctors who shot derogatory terms at me, and even put in my file. I want to help prevent that for others.
People generally will latch onto that term when then think about us if we use that term about ourselves. It's how brain memory and sorting works.
It's like telling someone NOT to think about (anything). The brain thinks about that very thing.
Of course, anyone can use speech patterns that are comfortable to them this is just one thing to consider regarding how the stigma can follow us from how we talk to others.
I suppose, though, that those who don't understand never will unless they want to learn more. They will label us however they choose. I just don't want to hand them the label maker already loaded.
I wonder if some family members, friends and even doctors may have reacted differently had I not been so open when I felt "crazy" -- they went right there and have never come back around to see that was not at all the case.
So, when I encourage others to maybe consider language, I may be trying to undo some of the pain that cut me to the core - hoping others don't have to experience that.
All we have to explain to others is our language. It can work for us or against us. So, I guess, I come from a place of wanting to claim dignity through our speech, of painting the best, the truest picture we can. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
i felt that "negative word" today. I know that I am a sane person and I did NOT say that to the dr.
Sadly, its the dr.s that can make us feel that way, even when we know we aren't mentally challenged or making this stuff up.
This disease is maddening. That is the word i will use.
sorry if i offended anyone.
Posts: 14 | From tn | Registered: Jan 2013
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Keebler
Honored Contributor (25K+ posts)
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posted
- No. This is coming out all wrong. Sorry.
I'm trying to help . . . you did not offend. Apparently, I have, though.
I just came back to add that although it helps if we can present ourselves and think of ourselves in the best terms, holy moly, it's hard to think AT ALL with this.
So, I may be (hah, am) unrealistic to think that we can automatically turn into diplomats, especially when in casual conversation with others or, worse, with doctors who are not up to speed about lyme.
It's because of all the medical abuse around the "crazy" terms - that's a heavy load that seems to latch on and it's hard to loose. I can't even make full sentences - but - it's because of how all the bad doctors have made me feel that I was trying to make you feel better and know that it's not you, it's him.
Language sure is difficult, though, so please accept apology if what I said did not make you feel better. My way with words sure does not always convey my intent.
So, here's to hoping everyone can claim dignity. Avoiding doctors that clobber is best as it's so hard to "unhear" their assaults.
As for my use of language, I guess it is a jumble a lot and somehow think if we had the perfect explanations, we'd get the perfect understanding.
Maybe I keep thinking "if I could have just explained that BETTER . . . ." Ahhh.
I also want to say that I'm sorry you found yourself in this doctor's care. It can be very hard to find an honest and true LL doctor. I hope the next adventure is a very good one for you and your family. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- Thinking more about this. Any doctor with whom we'd have to be more careful of our speech, well, that's not a good doctor, then.
So, maybe we should not have to be so careful about what we say or how we say it (it's so hard with lyme, anyway) - but just don't even "hire" those who are not up to speed in all important ways.
Looking back, and giving this more thought now. Any doctor for whom I had to "prepare" how to present my case in the best light possible so they would be motivated to help - well, that never worked.
When you find a real LLMD, you should not have to think about how you talk. You should be able to say whatever you think or feel -- to be comfortable and just be yourself - as you are at any point in time.
You will know. The difference in feeling free and feeling fully accepted and understood is huge. Another major difference: they care enough to do a good job, to be a good detective and put some effort into the process.
Good luck. Take care. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Not all lyme doctors have the same level of experience. Not all patients need the most experienced. It is a matter of finding the right doc for the right patient, and understanding that there is a learning curve for both.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
thank you keebler. i know your intentions were only for the good of the entire lyme community. i agree that we all help to contribute to the already horrible stigma with lyme when we call ourselves names.
the bottom line on this one for me, is i should have trusted my gut. even though this dr. is very kind and willing, he doesn't have the confidence nor in depth knowledge in treating that I feel that I deserve.
it is a very hard disease to treat and every person is unique. It just doesn't help my already anxious heart to hear my dr. say "i am not sure how to treat lyme".
im sure he has helped many people already, I am just not willing to waste any time.
so i will move on.
I appreciate all your help and concern...truly.
Posts: 14 | From tn | Registered: Jan 2013
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Not all lyme doctors have the same level of experience. Not all patients need the most experienced. It is a matter of finding the right doc for the right patient, and understanding that there is a learning curve for both.
Posts: 267 | From South | Registered: Oct 2011
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Keebler
Honored Contributor (25K+ posts)
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posted
- It's a excellent point that not all are of the same level and the learning curve is very steep. And everyone has to have their first patients.
Still, there is never an excuse for dumping lies onto a patient. It's one thing to say they don't know how to address this or that in its full measure but it goes beyond reasonable to revert to false statements and dismissal of symptoms.
In fairness, some may not know when they do this. So, as we are patient with the VERY courageous doctors starting out treating lyme (for it does take a ton of courage and lots of work) but we have to be so much more educated if they are not up to speed.
It is vital to be kind and understanding - as we WANT more doctors to learn more to be able to treat. Still, if they are not yet able -- or tell us things that we know are not true -- it's just not a good thing any way you cut it.
It's worse when they tell us things that they say are true but are not and we do not know that.
I'd rather hear "I just don't know" or "I will try to figure this out but it may take some time."
This is one reason why ILADS is so important. If a doctor attends ILADS conference, gets their DVD, reads what ILADS researchers are up to, etc. that at least tells us they are taking in detail from the best professional group.
Best if that doctor has gone through the ILADS physcial training program. -
[ 04-30-2013, 05:13 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
& WHY you need an ILADS-educated, Lyme Literate Doctor (whether LLMD or LL ND, or both) -
Posts: 48021 | From Tree House | Registered: Jul 2007
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poppy
Frequent Contributor (1K+ posts)
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posted
Keebler, I don't think lies is the correct way to describe what happened with this doctor. It sounds more like lack of experience. Be careful about trashing every doctor that does not behave in the way we would like. Or the number of places we can go will become even smaller than it already is.
Posts: 2888 | From USA | Registered: Mar 2004
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Keebler
Honored Contributor (25K+ posts)
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posted
- My intent here is not to "trash" but to help someone figure out how to find the best doctor - if possible. I know this doctor is a good person and have acknowledge his courage in even treading into lyme treatment.
Still, if it's about determing what is adequate care and what is not . . .
I was going mainly on the statement: "herxing should NOT last more than a few months" (end quote)
(neutral voice tone) that statement does not seem to benefit the patient. It is not correct.
Previous posts mentioned herx support and what else could be going on but the doctor did not offer any of that.
What you say is correct in that we can't fence off the smallest area for only those who are the most expert. It's just that we've all been told things that were not correct and sometimes I do tend to stand up against that.
I got strung along for 5 full years by a ND who said he was LL but turns out was not really at all.
But at that time, there was no other choice at all in my state. And Google had not even started at that time I started with him - and it took me many more years after Google started to be able to get to a computer).
It's true, too, not all who treat lyme are experts and even the experts don't have all the answers or the same take on things. I just hate to see anyone given wrong information when their entire future depends upon that one doctor.
If they get one thing wrong, what else? It's a balancing act, waiting for a doctor to get up to speed but it helps to know he's at least on the right road.
And how do we know they are on the right road? How do we know they know what is required? Having completed the ILADS physician training program is one good measure.
I know I'm forceful about this because I spent the last of my money on a doctor who was not at all LL, as he claimed and I trusted him. I know that experience and the fact that now I have no funds to treat has me more forceful, hoping others can seek out doctors who know enough.
Still, I don't intend to "trash" well meaning doctors who just don't yet know enough. I would hope they continue to learn. And, along the way, they may shine in some ways helpful while other doctors may fill in the gaps. -
[ 04-30-2013, 07:17 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
All I can say is that I am on my way home from the new dr. The difference between the two is beyond comparison. SO happy we made the 12 hour trip.
I FINALLY felt like I was being heard, understood and helped. The knowledge this dr. has blew me away.
I am hopeful now for the first time in months. All 5 of us will be treated by this dr.
One thing was mentioned to me when I addressed the issue" above " with this dr.
this dr. said-
Some dr.s can pay the fee to join ILADS and not necessarily follow or understand all the guidelines with patients. They can claim they are ilads trained and NOT follow guidelines.
There is a question/solution in the works to have dr.s take some kind of exam to test their knowledge of treating lymes before they can join ILADS because apparently this is happening more than it should.
WE ALL DESERVE a knowledgeable dr. (no matter the learning curve) If they in fact are following ILADS guidelines and read what is CLEAR to MOST, then there wouldn't be any confusion on simple questions like herxing. EVERY PERSON IS UNIQUE AND DIFFERENT, but herxing CAN and DOES last longer than two months. There is NO BLACK and WHITE with this illness.
I applaud theses dr.s who are putting their license on the line for us. I just pray that those who are uncomfortable or not confident in treating, should move on to something not as intimidating. It is only a waste of time.
Thank you to all who have made it your mission to help newbies to LYME.
We are all in the same boat, so lets not knock one another around.
Getting better each day, Gonnakicklyme
Posts: 14 | From tn | Registered: Jan 2013
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
So happy for you!
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Just so you know, your doctor will tell you that there are a few patients that hardly herx at all even though they are sick. Rare, but it does happen.
We are all different and what makes one person herx hard, may only cause a mild herx in another person.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
Yay! So glad you found a knowledgeable LLMD and your family is in good hands!
Some dr.s can pay the fee to join ILADS and not necessarily follow or understand all the guidelines with patients. They can claim they are ilads trained and NOT follow guidelines.
- ABSOLUTELY TRUE! So glad you liked him. You are in good hands now!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96220 | From Texas | Registered: Feb 2001
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I can so relate to all you wrote. I just recently saw a note from a PCP that hubby was trying to get to accept him as a new patient back in 2005. We had an LLMD, but that doc was out of state and required a local PCP.
We took the PCP pictures of hubby's seizure like episodes and he put in his office notes that the pictures looked posed. Then he went on to say that hubby probably had psychiatric issues and his physical problems were secondary.
And after all that the doc called us the next day and sent us a 30 day letter saying he would not accept hubby as new patient and would not write any prescriptions.
At the time we just didn't bother to get the office notes, but they ended up being faxed to the hospital where Steve died because it was in the same network. So from the start they labeled him as psychiatric even though he was in lung failure and the progress notes accused me of munchausens.
So yes, labels can hurt in ways you would never expect.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Herx..What tells me I am herxing is I ease up on the herbs and/or abx for a couple days and if the herx goes away, then that is what it is. If it comes back as I ramp up the abx again. It is a herx.. I can control it completely by varying my doses. This tells me I am still herxing after 2 months.
Posts: 3 | From Boston MA | Registered: Jan 2017
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