Talked with my LLMD recently and he is starting to worry me bc he tells me he wants to be "captain of the ship" and that I shouldn't expect to know more than he does, yet his guidance so far seems incredibly lackadaisical and insensitive.
He put me on adrenal supplements at one point and stressed that I need to take a lot of them.
I gave it a week and I felt horrible and my urine turned a rusty orange color.
I wrote him about it and barely got a response.
I have brought up MTHFR a few times because I have some snps, but he doesn't do anything about it and keeps prescribing supplements with the wrong B vitamins in them.
Three things from a recent conversation worry me:
A) When I was discussing a recent Myer's cocktail, I told him of the usual ingredients in one (Magnesium, Calcium, B-Vits, C) but he went on to inform me that I was wrong and they usually contain Magnesium, B-Vits and Glutathione.
B) He was worried that I ordered my own saliva test to check hormone levels O_o !!
Seriously?! He is lecturing me that I ordered my own test for my own information?
C) He prescribed a shake mix for leaky gut which contains a few things that are suspect for a Lyme patient: cane sugar, Glutamine, and Manganese.
When I asked him about the sugar, he quipped "you don't eat any sugar!?" as if I were from mars and went on to tell me I can find arabinogalactan on it's own if I really wanted to (and apparently this is the most important ingredient in the shake mix).
Well, guess what? There is no arabinogalactan in the shake mix he prescribed!!!
What is going on?
I hate to say it, but this guy is showing some prime flake behavior.
Also, why must doctors treat us like they are the first humans with intellect, especially with ones like this who are *clearly* getting some things wrong?
Here is the flow chart which doesn't seem to be getting honored:
I listen to my body and my doctor listens to me.
I really wish some doctors would wake up and realize that there are some smart patients out there.
I may have Lyme, but I am an intelligent, thinking human being.
Posted by Lymetoo (Member # 743) on :
There are only one or two good doctors in PA, so chances are that you have a flake.
Posted by VV (Member # 38828) on :
He's not in PA. I drive hours to see him.
Posted by poppy (Member # 5355) on :
I personally feel sorry for anyone who tries to treat patients with complex symptomology such as lyme patients have. They have the disease, the coinfections, other issues, and the consequences of all this. Seems like it would take a superman to deal with this in multitudes of patients.
Posted by linky123 (Member # 19974) on :
Does this doctor, by any chance, sell the supplements he is prescribing?
Posted by VV (Member # 38828) on :
"Does this doctor, by any chance, sell the supplements he is prescribing?"
Yup
Posted by faithful777 (Member # 22872) on :
He doesn't know what he is doing.
Posted by VV (Member # 38828) on :
"He doesn't know what he is doing."
He's *ahem* one of the most high profile LLMD's out there.
Posted by lax mom (Member # 38743) on :
I know in the past you mentioned having an appt with **edited out per Lymenet rules** coming up.
If this is him, it's inaccurate. He practically screams at me to not eat sugar because it feeds the bugs.
[ 08-27-2013, 11:30 AM: Message edited by: faithful777 ]
Posted by VV (Member # 38828) on :
Sorry, but that's exactly his reaction.
He seemed wholly unconcerned that I *was* concerned about the cane sugar in the product.
I have no explanation for the inconsistencies.
Posted by lax mom (Member # 38743) on :
Hmmm. I can't explain it either.
He even has a long spiel (which I hear during every, single appt) about "try organic brown rice cakes with almond butter, if you need the taste of sugar, try only a smidge of organic, all natural unsweetened sugar free jam".
All I know is that like all of us, he's human.
I had a Dr K Art practitioner who wanted me to take a product with cyanocobalomin in it, but I have MTHFR. I simply said, "I can't tolerate that form of B vit." and moved on.
Plus, you don't have to buy your supplements from him. I buy most of mine online.
I was on Inflammacore for almost a year. Was that the supp?
Posted by VV (Member # 38828) on :
The supp is OptiCleanse GHI by Xymogen.
Posted by lax mom (Member # 38743) on :
That looks really good except for the L-Glutamine. But that was your whole point.
Posted by WPinVA (Member # 33581) on :
My very good LLMD doesn't know much about MTHFR, so I wouldn't judge him on that alone. There seem to be too few doctors who know much about it, and although it is linked, it is somewhat separate from the Lyme specialty.
There also have been a few times when my doc has recommended a supplement, and that supplement turns out to have something in it that I should not have. It's not ideal, but it's probably inevitable with all the complexities of this.
For the MTHFR, could you find an integrative doc who knows more about that to supplement your Lyme treatment? I see both and they complement each other nicely.
That said, if the dynamic between you and this "famous" LLMD is broken and you don't trust him, then maybe he's just not the right doc for you.
Posted by sparkle7 (Member # 10397) on :
He doesn't sound good to me. You're the boss & you pay his part of his salary - I'd move on. I think we need to find doctors who are on the same wavelength as we are.
They call themselves LLMDs - we pay extra for that. They should be more knowledgeable in the different modalities to treat Lyme & the co-infections, parasites, etc. If they aren't - why are we paying them?
Posted by beaches (Member # 38251) on :
100% agree with you Sparkle.
Posted by Robin123 (Member # 9197) on :
I suggest you move on if you can't be in partnership with your doctor. I have a wonderful doctor - we have a mutual conversation. He's a nice person too.
Re your comment about the MTHFR enzyme defect, my doctor recently informed me about the www.23andme.com test - the saliva test that can check for methylation enzyme defects, and thus show the doctor which pathways to treat. The more we know about our body, the better.
Posted by kgg (Member # 5867) on :
I was just having a conversation about this with another lyme patient, with a medical background, the other day. Letting our LLMDs be "captain of the ship".
I am going to play the devil's advocate here. We as Lyme patients need to be very educated about tick born disease. There is a lot of info out there on the forums. Some of the advise given is helpful, other not so much. (I have seen emphatic information given that is wrong, but people follow it anyway).
There comes a time when we need to let go and let our LLMDs "be captain of the ship". Especially about the MTHFR information. Right now it is the newest info out there that many desperately ill patients are hanging their hat on. Hoping it will be the thing that will restore their health. It may be a piece of the puzzle, it may not. Time will tell.
We need to know our bodies (ie.: being dose sensitive, allergic to something, or don't tolerate a med/supplement). Yes, we need to be informed. We need to let the LLMD know how we react so that a helpful/safe decision can be reached about treatment. But then we need to let them decide.
I do advocate for my pocketbook. After years of buying the supplements the docs sell from their office, I typically do not do it. I find a cheaper source or an alternative that is similar. Unless of course, they are selling it cheaper. But that has only happened with one physician who sold her supplements cheaper than the local stores or online. A rarity.
Having said all of that, I would give this doc another chance but if you don't feel like he is listening then move on. Find one who will work with you and that you trust. Just be careful you are not walking away from someone who can help restore your health.
FWIW, Karen
[ 08-26-2013, 02:32 PM: Message edited by: kgg ]
Posted by Pocono Lyme (Member # 5939) on :
VV - I moved on. My husband and I were given a chewable supplement to try. Sweet?!!! WOW!!!
That wasn't the reason for moving on but I haven't recommended him in years.
It is nearly impossible to NOT purchase the supplements there. I don't want to post publicly on that.
Posted by Robin123 (Member # 9197) on :
Re what kgg said, I agree - if the doc really knows how to treat something, then that's important to listen to, and to consider trying, if it makes sense to us.
On the other hand, we're all different and I have never seen one size fits all re treatment. So if the treatment doesn't agree with us, then, yes, listening to our bodies is the other half of this. There has to be a partnership between what the doc is suggesting and how we respond.
Posted by Keebler (Member # 12673) on :
- This is not about the overall situation. Just wanted to mention this about the deserved concern about glutamine.
It's good to be aware of the reasons to avoid added glutamine / glutamate in all our supplements (and even eat foods low in it if they are too stimulating).
Just wanted to say, though, there is at least one time when this can help (maybe more). Still, even then, a very tiny amount, orally, may be enough. It can coat the stomach lining.
LEAKY GUT
IF leaky gut is so bad, L-Glutamine may be required to help heal the tissue -- and IF in small dose and also balanced with the right kind of calming things like magnesium that may be fine.
The gut tissue may not be healed in extreme circumstances with less than L-Glutamine. [A gluten-free diet is always important to consider, too.] While slippery elm, marshmallow root can be helpful, it does not always work for extreme leaky gut, so L-Glutamine can be a literal life-safer for the tissue of the gut.
I'm glad to see that people are learning it should be avoided as an added ingredient when possible. However, there may well be a time when L-Glutamine is necessary. And, it can be safely balanced with magnesium or other calming agents to make it less neuro-excitatory.
It is all about balance and knowing when to use what. L-Glutamine can stop stomach bleeding so it certainly has its time & place. When balanced. Relatively short term, followed by other things that would be less excitatory when they might be able to take over.
VV gets this but for others reading this who are not yet familiar with the issues around Glutamine / Glutamate:
See post: Caution: Aspartate; Glutamine; and Phenylalanine & even Seaweed -
[ 08-26-2013, 06:10 PM: Message edited by: Keebler ]
Posted by Hoops123 (Member # 18333) on :
I too have some issues with the doctor in question.
Posted by randibear (Member # 11290) on :
You've got to move it...move it
Posted by skies (Member # 28064) on :
VV--
Not well enough to write as much as I want to at the moment. But, I went to this doc. I found him arrogant and condescending.. I no longer go there. He also forced that same supp on me. I tried it the first time for over a month. It didn't help me and it stirred up the candida due to the sugar.
I told him that, but he forced it on me again. I explained what happened and he was like, well just take one scoop. (??) Still too much sugar for every day. For me, anyway.
He never listened to me, and he never remembered me and spent most of the appt paging through my chart repeating what we already discussed last time. He was cocky and rude.
I felt it was frowned upon when I asked questions. I always tried my best to do whatever was asked of me, but he had no patience for my low tolerance of most meds.
Anyway. I totally get your frustration. I had high hopes going there, but have moved on. The "best" isn't always the best fit for everyone.
Posted by VV (Member # 38828) on :
If anyone could message me with alternative LLMDs they have found helpful after moving on, that would be great.
I, like many have been on this Medical Mystery Tour Merry-go-Round for way too long and I'd really like to have a long-term doctor on my side rather than stagnating at every outpost along the way while docs come up with what they think is some new revelation, yet happens to be a path I already tried to no effect.
Posted by poppy (Member # 5355) on :
IMO, until there are lyme docs on every corner, they get plenty of educated support from the specialists in all the systems that lyme etc affect, there are no kangaroo courts trying to take their licenses, and insurance knows they have to pay, then it might be OK to complain on public forums. Until then, maybe a person who is dissatisfied with their care should just move on quietly and not vent on public boards for anyone who wants to collect these patient complaints to use against our docs.
Posted by lax mom (Member # 38743) on :
He's actually a funny guy with a dry sense of humor.
With all Drs, staying/leaving is a pros/cons type of thing.
Posted by skies (Member # 28064) on :
Well, if my post is wrong in some way, the moderators can delete it I guess.
Just sharing an opinion and experience, sympathizing with the person that started the post.
Posted by VV (Member # 38828) on :
quote:Originally posted by poppy: IMO, until there are lyme docs on every corner, they get plenty of educated support from the specialists in all the systems that lyme etc affect, there are no kangaroo courts trying to take their licenses, and insurance knows they have to pay, then it might be OK to complain on public forums. Until then, maybe a person who is dissatisfied with their care should just move on quietly and not vent on public boards for anyone who wants to collect these patient complaints to use against our docs.
Sorry Poppy, I doubt my one rant here would make for any sort of a case against a doctor. I'm accusing him of being a flake, not of malpractice.
I think the more we sit in the shadows trying to eek out an existence, the more we are actually allowing political marginalization to occur. I'm not interested in putting LLMDs out of practice, I'm just looking for a good one who is actually up for the task at hand.
If I were to actually go after doctors, I would start with the endo from John's Hopkins who denied that I had Lyme and completely refused to look at my lab work, then kicked me out when I asked about Lyme causing endocrine problems.
I drove hours to see that guy, stayed in a hotel, then I was treated like garbage.
Anyway, too much of this disease has people hiding away. I'm not interested in that. The CDC just upped their annual infection estimates from 30,000 to 300,000.
Time to step into the light and make this discussion public.
Posted by Anthropologista (Member # 35483) on :
Gulp. My husband has his first appointment with his PA the day after tomorrow. And he has AWFUL sensitivity to meds--even supplements.
After years of searching for a diagnosis and waiting in vain for his previous LLMD's treatment to work while he got worse, we're holding out a lot of hope for this doctor!
Catgirl, it's very helpful to read your experience of how you got him/them to hear you properly.
But is there anyone here who improved under his treatment???
Posted by Anthropologista (Member # 35483) on :
BTW--pl could someone pm me and tell me who is Dr K and what is a Dr K Art practitioner? Thanks!
Posted by lax mom (Member # 38743) on :
Anthropologista: don't let a few people's bad reports sway your opinion. For every 10 bad reports, I'm sure he has 90 good ones.
Look, my husband is working FT now, standing all day long. He goes grocery shopping, takes our son to the farmers market and the park and on and on. This is all due to this same Dr.
1 and 1/2 years ago, I thought I was going to lose my husband and now he is well! That is an absolute miracle!!! (And he had prior steroid and immunosuppressant use)
**edited out per Lymenet rules**
Yes, his ego is BIG...deservedly so. Yes, the Chinese govt sought his help to learn to treat Babesia. I'd have a big ego too if I was that highly sought after.
This Dr is not in hiding, even under persecution from the NY medical board.
No, he is not a saint and no he is not a magician. He is a genius in my book. Even though some of his personality quirks annoy me.
Yes he sells supplements...but what integrative Dr doesn't?
I have made my share of complaints to LN friends. But in the end, he's still my Dr because I trust him with my life and my husband's life...big ego and supplements and all.
I have seen his brain in action spending 4 hours with my husband going over every last medical record (reams of them) and coming up with 7 pages of handwritten notes for his first office visit.
If you need a Dr who will hold your hand, **Edited out per Lymenet rules** is not the guy. If you need a Dr who knows Lyme and co-infections inside and out...he's your guy.
Will you 100% get healed? Who knows. I'm not...yet. But I'm not giving up.
[ 08-27-2013, 11:27 AM: Message edited by: faithful777 ]
Posted by lax mom (Member # 38743) on :
P.S. Tell them "I'm extremely sensitive to meds", "I won't take that supp because it has a B vit I can't tolerate". Speak up. They will listen.
I was on liquid Septra weaning up 1 ml at a time for months. I am now on 50 mg Mino/day. Why? Because I spoke up and they listened.
If you have a difficult time with treatment from the PA, ask to switch to **edited out** only. If **edited out** is too much of a strong personality, go with the NP who may be more your style.
[ 08-27-2013, 11:37 AM: Message edited by: faithful777 ]
Posted by lax mom (Member # 38743) on :
BTW, while I'm ranting due to my face pain not being helped by Lyrica
Like someone else said, very few people truly know about all of the ins and outs of MTHFR. The one real expert/researcher passed away.
There is 1 Dr I know about, but she charges $1250 for an appt next summer AND you have to buy massive supps (like Yasko's protocol) AND you have to commit YEARS to the treatment...seriously, just for MTHFR treatment (not treating everything else)...it's that massively, horrifically complicated.
Posted by Robin123 (Member # 9197) on :
I actually have a doctor who knows what to do re detoxing issues and many other complementary care issues. Pm me if you want - means you gotta fly out to CA!
Posted by poppy (Member # 5355) on :
Patients who complain about a doctor in a way that makes it obvious who the doc is, on a board that supposedly has rules to protect doctors identities need to grow up and stop this behavior. If I were a moderator, these posts would be removed and the person(s) cautioned or banned.
Any doctor reading this would be disgusted and consider this patient an inveterate complainer and would not want to continue to treat. Doctors have been sent these posts anonymously, so maybe VV won't have to fire the doc. He will fire her. I would say her identity would be obvious from the content of her posts too.
I left this board once before, maybe it is time to leave again, if trolls are allowed and complaining patients abuse doctors in public. You have a problem with a doctor, I have a problem with you and the moderators. Any moderator reading these posts??????????????????????? On the other hand, maybe it is time to contact the list owner, since the rules of the forum are not being observed.
Posted by faithful777 (Member # 22872) on :
Having a high profile doctor doesn't mean he is doing a good job in your treatment. Get a new doctor.
This is a place to vent without using names or giving hints who the doctor really is. If it gets heated, you will be asked to PM each other and keep it off the public board.
Moderators remove posts when rules are broken. Slamming the moderators is against the rules too. We have a difficult job here keeping the peace with a multitude of personalities.
If you think someone is breaking the rules, please flag the post so we can take a closer look at it.
![[Wink]](wink.gif)
But that was your whole point.