visit to Dr. M

[Jeni]

Hello all,

I went to see Dr. M yesterday-I got his name off the list Maz gave me for lyme doctors in Washington. The funny thing was that he didn't know he was even on the list! He says that he really doesn't think that I have lyme, but ordered the cheaper test (not IgeneX) anyway, just to rule it out since I mentioned that my neck is always sore.

Anyway, he didn't seem to be overly interested in the minocycline, but he didn't dismiss it either.  He suggested that I increase my dose to 100 mg 2x a day, everyday. I decided to try it because I can actually tell that it has an anti-inflammatory effect on me. I am praying that I don't get a yeast infection! He is actually a functional medicine specialist and looks for underlying causes of disease. He was however, extremely interested in my increasing food allergies and ordered a million food allergy tests, an intestinal permeability test, a parasite test, and an adrenal function test. I guess that my old food allergy tests were done 10 years ago (!) and were probably not good anymore. He also said that it was significant that I tested borderline on the celiac test when I hadn't really been eating gluten for years…. I guess we'll see what happens with the tests.

He wants me to take a high grade fish oil and some vegetarian glucosamine. I didn't know that there was a vegetarian source until yesterday! Also, he wants me to keep up with my MSM. Oh, and he liked the probiotics I was taking from Nature's Way-“once daily bifidus and lactobacillus.” And, like I said before, he wants me to increase the mino for the anti-inflammatory effect. He is aware of the whole bacterial theory, but we didn't actually get into that discussion. He was very open and not negative about it, just not very interested in it. He said that he knows rheumatologists that are more open to it. I guess that I might ask him for a referral in the future, but I don't know.

I am a little depressed here as I am really sore today and I have to figure out how to do all these tests in little boxes…..The food allergy one I will just simply take to the lab and have them process it with my additional blood work. The others may take me a few days to figure out and get done. The thing that kind of freaked me out is that the lab he uses to process these tests is listed on some website as being questionable. I hope that I am not wasting time and money here….He has the best credentials, himself…..I guess that I am so very used to going to my rheumatologist who is extremely “straight laced” about treatments…Sigh…

Wish me luck!

Jeni

[Maz]

[user=1749]Jeni[/user] wrote:

I went to see Dr. M yesterday-I got his name off the list Maz gave me for lyme doctors in Washington. The funny thing was that he didn't know he was even on the list! He says that he really doesn't think that I have lyme, but ordered the cheaper test (not IgeneX) anyway, just to rule it out since I mentioned that my neck is always sore.

Hi Jeni,

With the AP and LLMD lists, it's really important to research these docs ahead of time, because some will be more AP and Lyme Literate than others. If you're uncomfortable with this doctor's assessment of your Lyme situation, then it's worth moving on to get a second opinion from a physician who is more Lyme Literate. Some of these docs are added to these lists, because someone, at some point, was happy with the services the doc provided. It doesn't, however, mean that they are necessarily going to be the ideal doc in every case. The best way to find a LLMD is to get the list from us, but then join a Yahoogroup Lyme support group or go to LymeNet and ask others for their personal recommendations of docs within your state. No one knows these docs on the lists better than the patients seeing them and it gives an opportunity to find out what the MO of the doc will be prior to an initial appt. I know this guy was convenient to you and you had some knowledge of him, but he may not be the best doc for you. Know what I mean?

Some of the folk here will build teams of docs…so they will have a rheumy, for monitoring and any adjunctive conventional meds they may need, as well as an AP doc (if IV clindy is needed, for instance) and a Lyme doc (if combination orals or other IVs are needed)…maybe even a naturopath for herbal adjuncts. It's quite rare to have a one-stop doc who will be able to provide all the services needed.

Dr. M may be able to get to the root of food sensitivities, which is a good part of a rheumatic's overall picture, but if he is not entirely on board with infectious causes, then that is a good indicator to add a doc to your team who is.

I know these decisions are awfully hard to make and doc appts can feel disappointing when expecting a panacea from one doc, but the truth is that it usually doesn't happen that way. I have a wonderful LLMD who is absolutely on board with infectious causes and antibiotic therapy and will use the full artillery, as necessary, but he is purely allopathic and, if I wanted adjunctive or naturopathic therapies, I'd need to find a separate doc to help with this.

I hope this helps, Jeni. I think a red flag on the Lyme thing is that this doc wants to run a different, “cheaper” Lyme test…does he mean standard ELISA and Western Blot? If so, I'd run a hundred miles, because IGeneX provides more sensitive testing and people go to this lab when their standard tests are questionable.

Peace, Maz

[Trudi]

[user=1749]Jeni[/user] wrote:

He says that he really doesn't think that I have lyme, but ordered the cheaper test (not IgeneX) anyway, just to rule it out since I mentioned that my neck is always sore.

Jeni–

When I read these words I got such a sinking sensation!!  Why would he want to run a cheap test for Lyme to rule it out–he has got to know that these tests are so unreliable.  I was clinically diagnosed with the rash, etc. and the standard test came out negative.  The Igenex, although not CDC positive, was considered positive by my LLMD and Igenex.

I get the feeling Dr. M is skimming the surface.  Is he an allergist–he seems to be focusing on food allergies?

Take care,

Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Jeni]

Hi Maz and Trudi,

Dr. M is running a western blot first to see what comes up. He just said that he really doesn't think that I have lyme at all. I know that he'll run the IgeneX test if I want him too, because he seems very agreeable to patient input. I just feel kind of overwhelmed right now with all the food allergy stuff he gave me. He is focusing on allergies because on his questionnaire/ history form that is what is the most obvious thing besides RA for me. I have tons of GI issues and I guess it put up a “red flag” for him. He's a functional medicine specialist, internist, and orthopedic doctor, too. As I understand it, functional medicine looks for underlying causes for disease and treats them to alleviate symptoms. Maybe it's my fault for not stating up front that I wanted help with the antibiotic therapy.

Another thing, my family doctor is closing her practice, but I think that I have found another group of doctors who look promising. On their site they say that they are very in tune with alternative as well as allopathic medicine. I am hoping that they might be able to help me out. Dr. M also mentioned that he knows rheumatologists that are more open and agreeable, so I may get a referral from him in the end.

I honestly don't know what to think about the lyme issue because I really never considered it before because of my classic RA symptoms and lack of lyme symptoms. I will just have to do some more research on the subject. My head is just exploding now with info overload and these darn tests! I know that I have digestive issues, so at least maybe I will learn more about those, and finally rule out celiac.

I need to get my records over to the new family doctor and maybe I can talk to them. I contacted one of the mino docs on the list a long time ago, and honestly I got a bad feeling from them, plus my family doctor didn't really feel good about them, either.

 I just don't know what to do right now……I am increasing my mino to see if it helps the inflammation and pain. I realize that I could just make things worse, but I really don't know what else to do. My understanding is that 100 mg 2x a day is a pretty standard dose to try for RA. I know that they seem to use that dose more for people that are newly diagnosed, but I think that I just have to try it, as I am getting desperate and looking at my Enbrel longingly! I am starting to get that panicked feeling that I always do when I'm in pain too long-it makes me feel really vulnerable and insecure.

Thanks Maz and Trudi,

Jeni

[Jeni]

Hi Maz,

I just wanted to tell you that I saved my list of AP doctors that I got from you guys quite a while ago, and I looked at it again. I think that one of the doctors in Seattle might provide more help with AP, and he looks to be very well educated when it comes to lyme. I think that you call these doctors LLD, right? Anyway, this guy does phone consultations too, so maybe I can call him first to see if he's what I need.

In any case, I am going to go do the food allergy stuff tomorrow, so we'll see what that yields.

Also, I think that Kim posted a list of lyme symptoms and side effects that was very interesting….

One step at a time!

Jeni

[Maz]

[user=1749]Jeni[/user] wrote:

I just wanted to tell you that I saved my list of AP doctors that I got from you guys quite a while ago, and I looked at it again. I think that one of the doctors in Seattle might provide more help with AP, and he looks to be very well educated when it comes to lyme. I think that you call these doctors LLD, right? Anyway, this guy does phone consultations too, so maybe I can call him first to see if he's what I need.

 

Hi Jeni….yes, sure is one step at a time…you're going in the right direction, just take things slowly and try not to get overwhelmed. Easy to say and not to do, I know. I felt a bit like a deer in the headlights in the beginning, but as you get more familiar with everything and do your research, you'll begin to feel more empowered about it all…knowledge really is power in this context. 🙂

Did I actually send you the LLMD list, too? LLMD stands for Lyme Literate MD. More often than not, AP docs are not Lyme Literate. They may say they are and that low dose monotherapy will be effective for Lyme, but it's not. LLMDs are highly specialised, have usually received training from ILADs and know the coinfections and how to treat them. AP docs don't. A good way to screen a doc saying they treat Lyme is to ask if they use ILADs/Burrascano treatment guidelines and IGeneX labs for testing. Some LLMDs will use other labs, too, so the clincher is really that they use ILADs/Burrascano tx guidelines. Hope that helps in your screening process when you make your call, Jeni.

If you also want the LLMD list, just let us know and one of us will send it to you.

Peace, Maz

[Jeni]

Hi Maz,
Yes, you actually did send me the lyme list too, but I found this other guy on the AP list! His website mentions IgeneX specifically and ILAD (I think!). I guess I need to call and see if he if familiar with AP for RA too….I don't know if they are experts in lyme if that means that they understand about mino for RA and all? I will call soon and find out.

Thanks for all your insight and help as always! I really appreciate it!

I am going to go pick up my frozen blood now and ship it for the food allergy test!

Thanks!

Jeni

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