Want to warn what my PCP said

[tpotter]

I was telling my PCP the other day about all my family's problems, the fact that I was just dx with MycoP (IgM 1750, IgG 250), and both my boys and DH have tested positive for IgG (180 - 250.) I told her about our forum (she's VERY understanding of the whole thing), and that I wanted a lyme test (I'm going to start with a full Western Blot...the insurance paid one.) I then told her about going to an LLMD, and she started on a rampage (not a bad one,) because she "hates to see her patients taken to the laundry." She said that before she was diagnosed with RA, she also went the lyme route, and there is a dr. in our area (on the Ilads list) who had her do a bunch of very expensive tests, then go to a specific dr., who diagnosed her (inaccurately) with definite Lyme, and treated her as such. The more she told me, the more I realized that the person she was talking about was the person down the street from my house, who I had also called (but hadn't gone to, yet.) She said you have to be very, very careful, and just because they are Ilads drs, doesn't mean they all know what they are talking about. She said that many of them are family practice drs, who have decided that they have this specialty in Lyme. When I told her that I had spoken to a Lyme specialist recommended by another mom on the forum, and he is out of a major university (I told her which,) she said that that's probably fine.

 

She doesn't deny that there are definitely people with Lyme, but she also wants to make sure her patients don't end up paying a ton of money, and then still end up with an incorrect dx. So, all I'm saying is to be careful. I really think that many of us, and our kids may have Lyme, but many don't, and maybe whatever is wrong with our families is mimicking lyme. But I also think that it may be going a little overboard, and we need to be careful as we try to find answers.

[justinekno]

I think that's true for any dr you see. You have to do your homework on the dr and his credentials & experience and in the beginning, take everything they say with a grain of salt. I think that's why second opinions are always a good idea too.

 

I was telling my PCP the other day about all my family's problems, the fact that I was just dx with MycoP (IgM 1750, IgG 250), and both my boys and DH have tested positive for IgG (180 - 250.) I told her about our forum (she's VERY understanding of the whole thing), and that I wanted a lyme test (I'm going to start with a full Western Blot...the insurance paid one.) I then told her about going to an LLMD, and she started on a rampage (not a bad one,) because she "hates to see her patients taken to the laundry." She said that before she was diagnosed with RA, she also went the lyme route, and there is a dr. in our area (on the Ilads list) who had her do a bunch of very expensive tests, then go to a specific dr., who diagnosed her (inaccurately) with definite Lyme, and treated her as such. The more she told me, the more I realized that the person she was talking about was the person down the street from my house, who I had also called (but hadn't gone to, yet.) She said you have to be very, very careful, and just because they are Ilads drs, doesn't mean they all know what they are talking about. She said that many of them are family practice drs, who have decided that they have this specialty in Lyme. When I told her that I had spoken to a Lyme specialist recommended by another mom on the forum, and he is out of a major university (I told her which,) she said that that's probably fine.

 

She doesn't deny that there are definitely people with Lyme, but she also wants to make sure her patients don't end up paying a ton of money, and then still end up with an incorrect dx. So, all I'm saying is to be careful. I really think that many of us, and our kids may have Lyme, but many don't, and maybe whatever is wrong with our families is mimicking lyme. But I also think that it may be going a little overboard, and we need to be careful as we try to find answers.

 

[matis_mom]

Thanks for that post, Tpotter! I really needed to hear that, since I am going into panic mode here! I think your PCP is right.

I am going to look for a PRUDENT doctor. One who neither dismisses the whole thing, nor orders every test in the list (Our dear PANDAS doc called it "the rule of 35": if you order 35 tests, one of them is bound to find SOMETHING!). Not saying tests are not useful, but yes, we need to be prudent, especially since this can be a long battle, you don't want to spend all your $ in round 1, and then find you are out of resources to fight it to the last.

That's why I am so thankful for my PCP. She is treating me without a positive test. I brought up IGENEX and she said yes, sometimes it's worth doing, but she doesn't need it at this point.

[sptcmom]

I would agree with all.

We did a TON of Igenex testing (we wanted to) and 99.9% came back negative but Bartonella was borderline or high normal. Dr Jones saw DS and the bloodwork and ordered ONLy additional Bartonella labs from a lab that goes deeper than Igenex since Igenex caps off at 1:20. DS has 1:230 Bartonella and with new meds he's herxing badly right now but we're on the right track I think.

A second opinion before starting any meds and tons of prior research, doc ratings etc are all very imp. Lyme is a clinical diagnosis and after a clinical eval a good doc should be able to pinpoint only the very minimum testing needed.

We had 1.5 years worth of futile specialist visits, all ordering very intense labs and procedures, radiactive tests etc just to see and all came back negative. Its been very frustrating.

Goodluck.

[tpotter]

You're welcome. My DH was going to see Dr. B, and I was going to go for a followup (my DH about his non-responsive RA, and now the positive MycoP), and my about the MycoP and asthma. We had appointments for 2 weeks ago when my boys were supposed to get IVIG, but insurance is still fighting us! So, I cancelled the appointments, but I think we may have to drive up there by ourselves if it doesn't get approved for the boys on Tuesday (2nd level appeal.) I want to talk to him about everyone in the family getting treated for MycoP, because I'm quite positive that in our case, I keep getting MycoP (just didn't know it before this), treating short term with azith (it was the only thing working), then it went back and forth to my whole family over and over again for the past 3 years (that's how long my asthma has been out of control!) I also want to talk to him about treating with Lyme meds (which are similar to MycoP meds), and maybe he can ask Dr. J. or someone their opinion on the whole thing, since there are so many false negatives and positives with Lyme testing.)

 

Given my family's history, I really think it would make sense, even if the Western Blot comes back negative. The problem with Igenex is that it might be a little more specific, but it is not failproof (even they admit that), and there are just too many false positives and negatives.

 

Also, one more thing, concerning MycoP testing. Many doctors say not to tx elevated IgG levels, because they think that it only means that there was a previous infection, and that they don't still have it. Well, I read the comments that came with the test, and it clearly states that the IgG levels DO NOT differentiate between current and previous infection! That's why I want my whole family treated. I know that if Dr. B. says to treat, our pediatrician will follow his directions (took 3 pediatricians to find someone finally willing to listen), and my PCP certainly won't have a problem. My husband's PCP may refuse (I switched from him years ago, because I got fed up with him telling me I wasn't really sick, and didn't need abx (I'm sure I already had the MycoP.) The only reason he tested my husband (and they didn't even know how to order the test , was because I told my husband to tell them that I had it, and that both boys also tested positive for exposure! But, his dr. wrote on the results that it only means that he's been exposed, but doesn't have an active infection (even though they wrote right next to the explanation saying the opposite!)

 

I have to tell everyone...thank you so much for being part of this forum...I can just say all these things, and no one thinks I'm crazy

[sptcmom]

The Igg for Myco Pneumo treat or not to treat also varies with docs. Dr B. said IgG is of no consequence. BUT Dr T treated DS for it stat, back in April and Ds's asthma has been TOTALLy under control with NO meds. We did Biaxin 10 days and then more of that course twice later.

Seems like a crap shoot most of the time- all these IgGs and IgMs.

[lyme_mom]

I would guess that most doctors would say the same thing because there is a raging debate going on about Lyme. I have gotten similar reactions from many doctors during our Lyme treatment but none of these doctors understands Lyme. I have tons of stories and i have gotten everything from smirks to outright hostility towards our llmd. All I can say is thankfully I didn't listen to them. The llmds we have used are the best doctors we have ever had and they healed us Like anything else some are better than others so references are important. If Anyone needs an excellent llmd in MD pm me. Read Cure Unknown for more info Aboutthe war over Lyme disease. It prepared me for all the opposition I encountered.

[lyme_mom]

I would guess that many if nott most doctors would say the same thing because there is a raging debate going on about Lyme. I have gotten similar reactions from many doctors during our Lyme treatment but none of these doctors understands Lyme. I have tons of stories and i have gotten everything from smirks to outright hostility towards our llmd or our Lyme treatment. All I can say is thankfully I didn't listen to them. The llmds we have used are the best doctors we have ever had and they healed us Like anything else some are better than others so references are important. If Anyone needs an excellent llmd in MD who is reasonably priced pm me. Read Cure Unknown for more info about the war over Lyme disease. It prepared me for all the opposition I encountered. Good luck!