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Update / Tips for My Lyme Appointment on Tuesday?
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Update / Tips for My Lyme Appointment on Tuesday?

Hi everyone :D,

I hope everyone is doing good and had a great Saint Patrick's Day! I'm just posting to follow up on some stuff. I've been dealing with health problems since late September and a couple months ago I got a positive IGeneX test for Lyme so I've been waiting for my appointment with an integrative medicine doctor at KU Med (Recommended by IGeneX). My appointment was supposed to be at the end of April but they called me up and said they had an unexpected opening for day after tomorrow :D!

I was wondering if anyone had any tips or suggestions on what I should mention to the doctor and what things I might do to prepare for the appointment? I don't wanna go all over the place but I'm not sure what might or might not have anything to do with Lyme.

So far I wanna mention:

- The Constant Fatigue
- Mental Cloudiness / Sluggishness
- Frequent fevers (99.6 - 100+)
- Elevated Liver Enzymes
- Muscle Twitching
- The positive IGeneX Lyme Test

I'm kinda surprised my doctor didn't pay more attention to the Liver enzymes as I just found an older blood test done in the summer that also showed my liver enzymes, bilirubin and alkaline phosphatase, elevated. What's a little concerning is those same liver enzymes tested again three months ago had risen compared to the previous by at least 150% and are now way out of range, I don't know what that could mean :/...

Maybe Lyme can mess with your Liver?

Anyway does this sound pretty straight forward to ask the doctor about? I've also gotten copies of all my blood work including the Lyme tests, the IGeneX Lyme test, and my Liver enzyme and CBC tests to bring to the appointment. Am I forgetting anything?

I just don't want to mess this up since I've waited so long. I hope to leave this appointment with some progress and answers unlike my countless other appointments I've had :/.

Thank you for reading this :D I know it got kinda long.
11 Comments Post a Comment
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Avatar_f_tn
Sounds like you've got what you need for your appointment. That is great that you're getting in weeks earlier!  What a relief!  I truly hope you get a sympathetic doctor who is willing to look beyond the old dogma about Lyme.

Every time I got more bad news or a new symptom, I went home and googled it along with the word "Lyme."  Every time, results came up, including my search for "Liver Lyme."  I would print out reputable sources and take them to my doctor. (Luckily, I had a sympathetic neuro.)

There are coinfections of Lyme that can also cause elevated enzymes, including Ehrlichiosis (present in middle America), Babesia (acknowledged in Northeast, but present nationwide), and Bartonella (not acknowledged to be tick borne, usually dismissed as a mild disease,, but known to LLMDs to cause neurologic and GI symptoms).

I can't remember what tests you've had, but it's worth a conversation with a doc about getting tested for these three other infections, especially since you show Lyme antibodies. Just know that many people test false negative for Bartonella and Babesia. I tested false negative for Babesia 3 times.  

Many doctors know little or nothing of Babesia, but you can let them know that the Red Cross is worried about the blood supply, as they have no reliable test for it.  Babesia is on their donor questionaire.  (They were more concerned when they heard I had Babesia than they were about me having Lyme. I am now on the "indefinite suspension" list because of the Babesia.)  

I hope your appointment goes well!

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Avatar_f_tn
You sound *very* well prepared for the appointment.

If you don't have an extra set of test results for the doc to keep, I'd suggest you either copy them before you go to the doc's or ask the doc's staff to make copies for you.  Once test results disappear into a folder at a doc's office, you can never be sure you get copies of everything later if you need them for a future doc.

And it does happen that you can need copies of those tests in future, if nothing else for your own satisfaction and history.  (Trust me, you won't remember any of this stuff in any detail a year from now.)  It's possible you would change docs in future, or need to see a different specialist, or who knows what ... Lyme is a tricky devil, and a future doc may see things in the current tests that the current doc didn't.  

If you have specific questions, you might take a piece of paper with a couple of notes written on it to remind you of what you want to ask -- I was always so brain-addled and so wigged out at Seeing The Doc At Last that I would be forgetful.  Lyme does strange things with memory.  I usually couldn't write down what the doc was saying at the appointment, but as soon as he said goodbye, I'd sit down in the office lobby and write down everything I could remember.  Even the trip home caused me to forget stuff!

Okay, end of lecture.  Very glad for you!  We look forward to hearing how it goes.  :)
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I agree, you sound well prepared. I also had high liver enzymes and still do so I agree you should ask the LLMD for a co-infection test.

It turns out that the Bartonella lesions that are in my brain are also on my liver. They are very small and not worth taking out or anything but that could be a reason for your test result.

I take a notebook with me to my appointments and write down as much as I can, even little phrases that will remind me in the car where I fill in the rest of the notes.

Good luck on your appointment.
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Avatar_f_tn
Hi,

I agree with Mojogal you should take a notebook and write your questions and jot down the answers you get, you really do forget afterwards when you have brain fog.

According to my lyme doc, it's really unusual for lyme to mess with liver results, and so I think you need to ask which co infections could be causing that. I had mildly off liver enzymes at some times in the past and I have 2 of the co-infections in Jackie's list.

Ask if you should have further tests before starting treatment.

Assuming you'll get put on abx, ask the doc
- what monitoring will be done ongoing of your liver, heart etc to make sure they're not having nasty side effects
- What is his availability for urgent advice, in case of sudden new symptoms or herxheimer reactions etc; eg should you email him? when can you pohone him?
- how many patients he has cured with the protocol he proposes for you (Perhaps a bit cheeky, but if he does know what he's doing he should be happy to field this question. I've wasted to many years being deferential to doctors who, it eventually turned out, didn't know their stuff and had an unimpressive track record.)
- ask what nutrients you should take
- ask about symptom relief whilst on treatment, eg. what should you do to get the fevers under control.

Good luck with it.
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Avatar_f_tn
Good advice from youvegot.  I would definitely follow that approach.
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Avatar_m_tn
Hi thank you all for your suggestions I used them all :D.

I had my appointment today with the doctor from Integrative Medicine and I have to say I left very disappointed, worried, and with possibly thousands of dollars worth of blood work he wants to run :(.  He was very bad at communicating.

Anyway here's the short(ish) version, I went into the appointment and he looked over my results asked tons of random questions about my exposure to harmful chemicals before I was born, while I was a child, my social life, everything. When we finally got to my symptoms, fever, chills, extreme fatigue, and mental cloudiness he seemed uninterested.

He did look at my IGeneX Lyme results and says I for sure 100% have Lyme :D. However he went on to say people die from Lyme because of heart complications it can cause (thanks). I also have a heart condition that my cardiologist said is benign but warned me could be effected by diseases such as Lyme to the point where I may need a pacemaker. So obviously this scared me a lot and the importance of getting treated for Lyme is even more important considering this condition.

I thought surely then after saying all this he's going to focus on the Lyme right? Get me treatment? Considering I have fever (a sign of infectious disease), a positive Lyme test, and according to him an active infection of Lyme. But no, I'm given hundreds of dollars worth of blood tests he wants to run to test my Vitamins and test for food sensitivities even though I take Vitamins and have no GI trouble at all which I told him. He says before he considers treating the Lyme he "wants to get my body into a healing state" and that involves waiting another month to get these results and then waiting three more to change my diet and add supplements and see if that helps first.

I don't know I'm so frustrated, sad, scared, and disappointing. Am I missing something? Why change my diet and add supplements when he admits I have an active infection of Lyme. That's like saying "You have strep throat  but we're going to get your body into a healing state with vitamins, diet change, and supplements before we give you antibiotics to get rid of your strep throat, the thing that's making you sick...."

I don't know what to do I feel sick and at the end of my rope. I know its not my diet or Vitamins and I see myself at the end of this with a table full of supplements and no treatment :(? I waited so long for this appointment :(.

What should I do ?


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Avatar_f_tn
You relate the situation and your concerns so very well ... and I would have exactly the same reaction you are having to the situation.

If your impression is that the doc will not proceed without buffing up your immune system or whatever the truckload of other tests and stuff are supposed to do, then I would find another doc and try again.  

Now that you have in your hands EVIDENCE of Lyme infection (you got full copies, right??  Not just a summary page?), you can take those to another doc and try again.  This doc you just saw is a strange combo of acknowledging Lyme but wanting to take the long road to treating it.

A few questions, not necessarily in order of importance:

Question 1:  Did the doc say how long the abx treatment would be?  

If after all this, he wants to treat you only for a couple of weeks, then I'd find another doc.  A couple weeks of treatment is almost always insufficient, from what I read, except possibly immediately after infection.

Question 2:  Does the doc sell vitamins etc from his office?  

If so, and if he seems to do so less out of protecting the patients from junky vitamins and more to line his pockets, then that's another bad mark against this doc.

Question 3:  Another problem I would have is that he wants to wait 4 months before treating, while you change your diet and get more tests run.  Time is of the essence in treating Lyme etc. -- it can be cured later in the game, but why let the beggars get entrenched?  

Unless you are REALLY run down, I would not wait.  I'm not sure being run down is even a valid excuse for not treating.  

Question 4:  Did the doc discuss or test for possible co-infections?  

Rico has commented here that her doc discovered well into treatment that there was a *hidden* co-infection lurking and is now treating it, but that's very different from not even considering the possibility.
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You say you are so frustrated, sad, scared, and disappointed.  I would feel exactly the same.  I am glad you are not blaming yourself.  It's the doc; it's not you.

And you are *not* at the end of your rope.  We will take up a collection here and send you by UPS a truckload of extra rope if necessary. It's good that you can untangle the situation and how you feel about it .... the question now is what to do.

Here's my suggestion:

1.  Be sure you got copies of ALL the tests in full, and not just summary pages.  You might want to ask the doc's office person that question, in an innocent fashion, and I'd even throw in that I'd be willing to pay for them.  The office person should decline that offer, but it might make him/her more cooperative to know that you are not just being demanding.  Office staff = petty tyrants too often.

2.  Confirm from the test results whether the doc tested for coinfections or not, and if not, whether he indicated he intends to do so.  If he didn't and won't, then I would find another doc if it were I.  (Sometimes doc's offices don't copy for the patient the tests that were negative -- stupid, but true.)

Sorry, I'm rambling here, but it's late and I don't want to wait till morning to make it more coherent.

You are entitled to feel let down, but don't blame yourself.  You're doing all the right things, as far as I can tell from my own experience and that of others.  We're here, let us know how we can help.  "Suggestions R us."
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Avatar_f_tn
Hi Neptune,

I'm so sorry it happened like this.

Knowinghyou have a Lyme infection and delaying treatment of it is medical negligence and it is clear proof that this doctor iis only interested in making money off you.

I saw a doc before my current one who made me have a 7,000 Euro workup. Thanks to his tests, I can now tell you my liver contains seven times as much stored copper as it could, that my body has 81 times more than the maximum amount of mercury considered "safe" by the World Health Organisation, that I have antibodies to all kinds of rare bacteria that I should not really have antibodies to, that I am mildly allergic to about 20 different foods (even though I have gut ache non stop no matter what I eat), that I .... oh, I cannot even be bothered typing any more of this cr@ppola.
None of this explains my symptoms, none of it can be treated, all of it is caused by having lyme disease. Do you get the point?

You have lyme disease and there is no need to do more tests except the following:
look for co-infections (after asking in detail about your symptoms so you only spend your money testing for ones you actually have symptoms of)
Full blood count to expose if you are anaemic of have white blood cell deficiencies
CD57, which most lyme docs use as the bet available measure of how much lyme is suppressing your immune system
liver function enzymes, to make sure you are fit to take a truckload of antibiotics
ECG for the same reason as some abtibiotics can give you heart arrhythia symptoms

I cannot be more emphatic, this doctor just wants to make money from you because if he wanted to get you better as fast as possible, you'd be put on antibiotics right away, like you said.

On another note, when doctors are poor communicators, they are muddled thinkers, and that means they are bad doctors.



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Avatar_f_tn
Now I want to talk abotu the heart thing.

I had a heart condition, an arrhythmia that may have been congenital or may have been caused by having lyme.

7 percent of patients get lyme in their hearts so it's not a very common area of the body to get attacked, BUT I personally think lyme seeks out your weak points, and went into my heart because there was already something wrong in there.

An extremely common lyme co infection that causes heart problems is chlamydia pneumonia. You need to get tested for this so the right antibiotics can be included in your protocol if necessary. You get lots of false negatives with this test so you need to get tested over adn over up to 5 times - any doctor who is half decent knows this adn will prescribe multiple tests.

back to my heart thing.
It grdually got worse and in the end it was beating irregularly all the time and I couldn't really function, the docs all said it was dangerous and I had an operation that fixed it.
Yay!
It's perfect now. .
Except
Boo! I do still have chlamydia pneumonia which makes it thump sometimes, and hurt when the weather is muggy adn stormy.

Anyway, please tell me exactly what your heart problems and symptoms are, I spent about 20 years trying to find a doctor who knew what was wrong with my heart and trying to find out what could be causing the problem (in the end 3 different things) so I can probably give you a lot of suggestions.

I'd bet you 100 dollars I know more relevant stuff than that doctor you saw yesterday!!!!
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I agree with everyone. There is no need to wait because as he is treating you he can change your diet and test for certain things. Not all those tests your doc suggests. It's important to check for co-infections and run a CD-57. So sorry you have to go through this but it sounds like you need another LLMD. Most of us have been there, exhausted and angry that we have to keep searching but in the long run it will be worth it!
Keep us posted.
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Avatar_f_tn
I could just feel your disappointment while reading your update! I know what that *thud* feels like in your insides when you realize the doctor is out to lunch.  It's almost like he's teasing you with a diagnoses, but then not treating you.  Strange.  Maybe he's trying to get you into optimal condition in the hopes of giving you a shorter course of antibiotics.  He might be trying to avoid the scrutiny that usually comes with long term antibiotics for Lyme.

I think it is ridiculous to tell a sick patient with an infectious disease to do a bunch of other stuff for four months before starting treatment.  YouveGot... said it well.  Having a whole bunch of information about how messed up you are from Lyme doesn't help one whit, unless it changes what antibiotics you should take, and whether you need to treat mold or address heavy metal toxicity.  

But there is no need to delay treatment to wait for these test results.  Also, it seems odd that he's assuming you will need to address all these other things first.  What if you don't have any other issues?  What you really need to do is start killing some of those spirochetes so your body can begin to recover and fight back.

Yes, detoxing and good nutrition are critical. It is true that some people's bodies are so messed up that they can't get well even with antibiotics.  But to assume that you're in such bad shape doesn't make sense to me, especially when you describe your symptoms.  My doc starts out easy with some oral antibiotics while he also starts supplements to help whatever is bothering me the most.  I have been detoxing as I go.

My doc ordered some additional testing to find out what condition my gut was in (really messed up according to the results), but I still started antibiotics while we waited for results.  I was put on shots shortly after the results came in as shots bypass the gut. This gave my gut a better chance to heal without the additional burden of abx.  I know this part about the gut isn't relevant for you, but it shows the example of treatment being an ongoing process.  For me, it has been adjusted every single appointment.

Every appointment I get a handful of new supplements.  Some I buy from the doctor because the manufacturer won't sell direct.  Most I get online from the cheapest seller I can find.  I make sure I know what each one is for so I can pay attention to whether it helps.  When it runs out, I go without for a few days to see if I notice its absence. If not, I don't order any more. (I do have a couple exceptions, including a high dose of Omega 3 and Meriva Curcumin, both for brain inflammation.)

I encourage you to contact the doctor to say you don't see how you can wait four months before starting treatment.  Let him know you want to start treatment now while you proceed in parallel with the testing he wants.  If your insurance will cover the testing, then fine.  But if you have to pay cash, then I wouldn't do it.  (My doc usually orders additional testing if a patient isn't progressing as expected. He waits until he sees the need.) I'd save that cash for antibiotics and the doctor who will prescribe them.  I'd also save that cash for testing for coinfections.

Were you able to book a follow up appointment?

It's bittersweet to me that some mainstream doctors see a greater need in treating Lyme than the "official" guidelines, but then they try to stick their toe in the water, either unaware of or unwilling to embrace the sheer complexity of the Lyme Complex.  I think the knowledge my doc and his PA have of the whole body and the enormous variation of Lyme and coinfections exceed the complexity of some other specialties.  ILADS offers a 2 week training program, and I wonder how they can even scratch the surface in 2 weeks.  I think a year of training, like many other specialities, is more appropriate.  I think that's a long way off.

Anyway, keep pushing forward for yourself. Don't ever just sit back and accept something or go along with a doctor who really doesn't make sense.  Having hope is important, but it doesn't cure Lyme.  Pursue this path as much as you feel you can before moving on to a different one.  I know in my case I could feel myself deteriorating and it scared me. I knew I was getting much sicker, and I'm so glad I went to my LLMD when I did.  While my recovery has been very slow, at least we stopped the slide when I started treatment.
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