posted
I had my third appt. with my "LLMD" today, and I'm so frustrated!!! Just needing to vent a little, and I'd appreciate any input...
I went to get my second IgeneX test results. He ended up going through all of my other results again and didn't even have my second round of results in my file.
He ordered second tests for Magnesium, which he said was low last time but it wasn't (I have the results, and he even specifically said he was glad to see it was ok), and Chromium.
He also redid some other tests. One of them was to test "leaky cells." The first time he did this test he told me Tiger Woods used it; this time it was all about Susan Sommers. I don't need celeb name-dropping, I need to get well!!
Finally he found my second IgeneX results. IgG more positive than the first one (which was positive), IgM less positive (the first time it had 2 positive bands, 4 inc bands; this time just 2 inc. bands overall).
He said this told him that I had it once but my immune system is keeping it at bay, and that the supps are helping. My mom, who went with me, pointed out that I hadn't been taking any supps in between test 1 and 2; only abx. He didn't seem to think this was significant.
He asked if I was doing P.K. detox, which he never told me to do but briefly mentioned in appt. 1, and didn't understand why I wasn't doing it.
He wants me to be taking 10 supps/day plus an rx that's for detoxifying - Well Chol, I think it's called.
Oh, and he also half-chastised me for not having done a heavy metal urine test. But I tried to fill the Rx he wrote me in my hometown, 2.5 hours away from him, and then found out I could only fill it at the pharmacy down the road from his office. Would've been nice if somebody had told me that.
He didn't even address my thyroid issues (2 kinds of anti-thyroid antibodies were discovered in my bloodwork), which I would think is an important matter.
When he was hurriedly walking out my mom pulled him back in to ask about that and he said "well you're taking selenium, right?" ...no, never told me that one. His response was to LAUGH and say I was supposed to be taking that for my thyroid.
No mention of the progesterone challenge he had me do (which I failed, by the way). My mom and I, at this point, were both too overwhelmed and exhausted to pull him back into the room for further clarification.
Anyway, this was my 3rd visit. My mom has been to visits 2 and 3 to take ample notes. We've both come to the conclusion that this guy's a complete quack. I highly doubt I'll be going back to him.
And so my frustration continues... I guess my plan of action is to buck up and deal with whatever comes my way until my name is at the top of the other LLMD's list, which is very long, and find an endocrinologist in the meantime.
Am I overreacting, or does this guy seem like a quack??
I'm just so bummed, 'cause I finally thought I was making some headway Thanks for listening.
Posts: 106 | From Michigan | Registered: Oct 2006
| IP: Logged |
trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
you have every right to feel frustrated with the way you have been treated.
I have found several LLMDs to be rather....scattered. But only one to be as scattered as the experience you relay here. One thing is for sure....the LLMDs are taking much more time to look at so many angles of our diseases and ill health...most PCPs do not take the time to do more than scratch the surface. The level of scrutiny it takes to be a LLMD sort of creates this level of scattered conversations and appointments that leave you scratching your head.
we are complex cases as lymies and this makes the job of the doc much harder. It does not excuse what happened to you though.
If it were me, (and I have been in your position) I would ask for copies of all my medical records from that office. sometimes they charge a fee for this. You can sign a release (via fax)and have them mail you your file. Then you can have all your records for YOURSELF to look closely at and highlight for the NEXT doctor.
I would continue on treatment as long as you are relatively stable and wait for the other LLMD as you had mentioned.
It is no fair you had to go through this.
NOT all LLMDs are created equal. Be sure to give feedback about this one as people in your area ask for referrals on the seeking the doc page. It is important to let others know what your experience is.
best, trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
| IP: Logged |
bettyg
Unregistered
posted
please send me a private message with this doc's names so we can take them off our GOOD LLMD list! ***********************************************
You have a couple more in your state you could try!
IP: Logged |
posted
I have concluded that because lyme can go anywhere and cause problems in so many areas of the body and mind, plus the coinfections complications, that it really is probably too much to expect one doc to handle all this. What we need are primary care docs and specialists to handle some of these things, leaving the lyme doc to kind of coordinate what is needed from whom and deal with the TBD treatment.
So, your idea of going to an endocrinologist too is a good one. Unfortunately, although we need LL endos, cardios, psychs, etc,etc,etc, those are even more rare than the lyme docs. So, it may be a matter of open-minded and competent docs helping you with one aspect that falls into their areas of expertise. If you have thyroid problems for whatever reason, then an enlightened endo should be able to help.
Good luck with your treatment.
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
posted
I'm really curious about the test to test for leaky cells -- what lab and what is the name of the test? Hubby has been told he has this problem, but has never actually been tested for it.
It sounds like the doc you saw is heavy into nutrition and alternative treatments. While I believe strongly in supplements, treating the infection should be the top priority.
I don't know enough about your history to say if all the tests etc are really needed in your case. Also, it is best to add in things one at a time -- this includes supplements and various treatments. This is especially a good idea when the various treatments are expensive. You don't want to spend money on something that isn't helping.
Heavy metals/mercury and the lyme connection is controversial.
The Welchol is the same as Questran I think. Helps some people and not others.
The P.K. protocol is very expensive -- helps most with very severe neuro problems.
Actually your magnesium levels could be falsely high if you have leaky cells -- at least that is what the doc told hubby. And the phosphatidylcholine (P.K. protocol) is what is used to repair leaky cell membranes.
If you aren't satisfied with the doc then I would look for someone else. Another option would be to talk to his nursing staff to see if they could answer some of your questions.
Good luck.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
posted
Thank you all for your input; some good points
Bea: The "leaky cell test" consists of 4 sticky pads being placed on one side of your body - 1 on top of foot, 1 on ankle, 1 on hand and 1 on wrist. Then little clamps that are attached to a machine(they look like mini jumper cables) are attached to each pad. The nurse pushes a button, and 5 seconds later it's done; you don't feel a thing.
I don't know what it's called, but from it the "LLMD" could tell if my cells were leaking (they were), if I was retaining water (I was), if my muscle tone was good (it was), my "energy level" (whatever that means), and if I was constipated (I was not).
If anyone else has EVER heard of this, I'd be interested to know. I'd also be interested to know how it supposedly works.
I have learned that this guy, while a member of ILADS, is not on lymenet's list of good docs (thaks bettyg!). I'll definitely be seeing a different REAL LLMD asap.
Posts: 106 | From Michigan | Registered: Oct 2006
| IP: Logged |
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
I didn't read your first post carefully enough & re-read that you have been on abx.
Sorry I don't know much about some of the alternative treatment but
Good luck to you & hope you can feel better soon
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
| IP: Logged |
posted
That doctor sounds like a sibling to the first so-called "LL" doctor I saw!
He was horrible--wasted months of my time and acted like I was too distasteful to even be in his office. And I bought hundreds of dollars of vitamins from his office, while I continued to get sicker.
The only good thing he did was he changed my thyroid medication from Synthroid to Armour Thyroid which helped with some of my hypo symptoms.
That might be good for you--to find a doctor who prescribes natural hormomes. It wouldn't have to be an endocrinologist.
Many Lyme sufferers have thyroid problems. It's a popular target for immune dysfunction.
While I still feel terrible and I can't find an LLMD close enough who will take me on, I think the six months of doxycycline prescibed by the so-so doctor I went to AFTER the real bad one was responsible for lowering my anti-thyroid antibodies to normal range on the most recent test results.
My thoughts seem to be a little incoherent. In any case, I know what it's like to be so totally frustrated by a (insert really bad word here) doctor.
Posts: 353 | From Florida boonies | Registered: Nov 2005
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Frown]](frown.gif)
Thanks for listening.
![[Smile]](smile.gif)
![[group hug]](graemlins/grouphug.gif)
![[loco]](graemlins/loco.gif)
In any case, I know what it's like to be so totally frustrated by a (insert really bad word here) doctor.
Printer-friendly view of this topic