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Had 2nd LLMD appt

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Posted 4/20/2014 5:39 AM (GMT 0)
I left the office feeling let down, frustrated, depressed, and worried.

This is my post w/ a little background:
https://www.healingwell.com/community/default.aspx?f=30&m=3039692

Labs done 6 wks ago when we started:
- All viral tests came back active/positive/high
- CD57 was 54
- Lyme test came back questionable and she wants me to do an IGeniX test, which is confusing because I thought that's what we did so I'm going to check with the lab's record's - going back for more labs on Monday.
- Thyroid levels are good - but I accidentally took my meds right before I had labs done so this is really only an indication that the meds are working

My previous posts describes the protocol I've been on for 6+ wks. Basically, she thought I should be feeling better by now as we have been: 1) addressing viral/bacterial load; 2) healing gut and support immune system so that we can then 3) address the lyme.

- My biggest complaint: I am only about 20% better than at my worst levels of exhaustion, lethargy.
- Brain fog/disconnectedness is about 50% better but depression and agitation is the same.
- My joint pain and heavy muscles are a little better.
- The GI issues are no better - I've also been on a very restrictive diet (no grains/dairy/sugar/caffeine) for 6 wks, 2 antifungals and have been doing other things to soothe and heal and I still feel pressure, bloating, tightness and had a severe vomiting episode last weekend and she doesn't know what it is or what to do about it.
- General eye issues are the same and twice I've had this painful ice-pick stab sensation in each eye so she wants me to see an ophthalmologist to rule out any other issue besides a lyme symptom.

She is switching out an antiviral to a one that is $100/month (so it better work), added metoclopramide, alabansa(?), and cholestyramine and increased pinella/burbur/parsley (15 drops 2x/day). But I'm pretty intuitive, and I sensed a twinge of apprehension on her part - not really knowing what to do. So I guess I'm still in a holding pattern before intense lyme treatment can begin.

Any ideas? thoughts? reactions? suggestions?

-p

Post Edited (Pirouette) : 4/20/2014 11:21:28 AM (GMT-6)

Posted 4/20/2014 10:54 AM (GMT 0)
I can hear your frustration and disappointment. It seems so wrong that we can deemprogress in some small ways but then have other symps impact us do it doesnt feel like we are progressing. So frustrating and scary. I cant help much with your protocol but I sure wondervif you have been on antivirals why your blood is not showing improvement, were the numbers a lower high at least from last test?

Not sure exactly the same as your symp but back in Dec Jan when I was on abx I had quick stabbing pains in my eyeballs as if being stuck with a needle. It only happened a few times but got my attention sincd I don't recall having that symp before. Like so many of our symps it is scary when it happens and it happens without warnjng. Has not happen since but I am vack on abx again si I will be keeping an eye open ;-) for it.

I do feel sometimes that these drs are not going tovfigure out how tovget me back ti health. But I gave to keep hoping for all of us tgay they can. How long have you been sick? I am curious if you thiught she was runnjng igenex wb test and didnt, what test dud the llmd run?
Posted 4/20/2014 10:59 AM (GMT 0)
I guess I am confused as to why your doctor would expect improvement when you haven't begun to treat for Lyme. I can understand building up the immune system and working on getting toxins out of the body, but how can any progress be made if the bacteria is running amok?

It is important that you have confidence in your healer, and it doesn't sound like you do at this point. Perhaps you should set a time limit on how long you are prepared to work with this person and in the meantime look for some other options.

Also, remember that your doctor does work for you, and you can make your preferences known. You don't have to pay for an Igenex test if you feel it will not help the diagnosis (although there are several different panels offered by the lab so she may be gathering useful information). But you could insist on being started on on Lyme treatment, for example.

Sorry you are in this no-mans-land when you really want relief from your symptoms and to make progress.

Post Edited (achievinggrace) : 4/20/2014 5:02:25 AM (GMT-6)

Posted 4/20/2014 5:42 PM (GMT 0)
Thanks Roxie60 -
Sorry - I clarified my post - the labs were done 6wks ago at the point we started the protocol (I outlined the protocol in the thread in the link above). So what she was saying was that 6 wks on this antiviral protocol should be making me feel better than I do.

I am sorry that you had he same experience with your eyes - but a little glad to know that I am not alone in that - but also sorry that I feel that way. ;) Hope that is the last of it for both of us.

I previously had other symptoms on my face and eyes that I was sure were fungus related and they have lessened significantly. Do you have fungal issues? I highly suspect either fungus or parasites are causing the eye problems but I understand that 6+ weeks on 2 antifungals should be solving fungal issues.

achieving grace -
That is a good point - I'm not sure why she thought I should be feeling better if we haven't started addressing the root of the problem. These appts go so fast (even though my first appt was 2 hrs, this was 1 hr) and there is so much going on, I'm furiously taking notes and I do have problems with cognitive engagement sometimes so I always follow up with an email with questions. Maybe it would be good to ask her to clarify what she meant.

I am fortunate in that there are 2 other LLMDs in the area so I had originally planned to seek a 2nd opinion once she got me to a point where we were ready to start they lyme/co-infections protocol.

I am wondering if I am not detoxing well - she did switch the binder and we're increasing the pinella/burbur/parsley tinctures. I asked her if I should have the MTHFR genes tested and other tests done (maybe I'll do a separate thread about those tests).

These decisions are all more complicated because the insurance program she participates in (that I signed up for) has $5k deductible. So do I go "all out" and ignore cost for now just to ensure I get on the right path faster - since I have to meet the deductible anyway? Or is that point moot because treatment likely won't be covered so I'm going to be paying for everything out of pocket anyway? Or is treatment more likely to be covered since the insurance company should be familiar with these treatment protocols with this LLMD?
Posted 4/20/2014 6:51 PM (GMT 0)
Gosh, it is just so hard to negotiate all this when you are having cognitive troubles, isn't it? Any chance a loved one can go along to your next appointment as your "brain"?

So it sounds like she is trying to get your detox pathways moving before starting the Lyme and co-infections program. That could be good. You could ask for treatment now, or just go with her treatment plan.

Getting a second opinion will allow you to choose between treatment plans. Many LLMD's are finding the "low and slow" approach to treatment the most beneficial. But it has to start somewhere!

I wholeheartedly believe your distressing GI symptoms will resolve with treatment. At various times I have had spasms as well as paralysis of the intestines. These are symptoms you will find on the list for Lyme. For me, it has really gotten so much better as I have been treated.

Your insurance decision is hard to fathom. All in all, you want to be well and it will cost money. Again, is their a family member or friend you could bounce these ideas off of? Gosh, I feel somewhat useless here!
Posted 4/20/2014 9:29 PM (GMT 0)
"...trying to get your detox pathways moving before starting the Lyme and co-infections program." - yes that is a very good way to express it.

Interesting that you think the GI issues will also be addressed with treatment. I have suspected that they were more lyme/co-related than anything else. So maybe I should just suggest that we start treatment anyway and see where it takes us. I am a little impatient by nature, so I became pretty upset at the thought of waiting to start a who-knows-how-long-but-long-process as months and months go by waiting for the GI issues - that no one seems to understand - to be solved! I'm currently out of work and going broke because of all this and I don't have time to wait. I go in again in 5 wks so I should know by then if there has been progress on the changes we made to the protocol and I can talk to her about starting treatment then. Hopefully I can learn as much as I can about my options before going in so I can ask the right questions.

No family members to help with the insurance details, unfortunately. They (and my closest friends) live far away and are marginally supportive. I tried talking with insurance reps (before signing up with this plan) and they were useless - so were the admin staff at the LLMD... will keep plugging away!

-p
Posted 4/20/2014 10:20 PM (GMT 0)
The anti nausea med she put you on can cause depression, and dystonia in some people. Zofran is a much better anti nausea med.
Posted 4/21/2014 1:15 AM (GMT 0)
Thanks Maine76 -

I am not sure I want to stay on metoclopromide - for that reason plus the fact that I don't have nausea, generally. It is way down the list of things I'm concerned about. She thought it might help the cramping.

Ironically, a common side effect of the cholestyramine (an alt. binder/cholesterol reducer - my thyroid med raises cholesterol) - is cramping, gas and abdominal distress, which is one of my top symptoms - see https://www.healingwell.com/community/default.aspx?f=30&m=3057446
and I've had the symptoms all day after the first dose. So, I won't stay long on that!

-p
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