need LLMD referrals....Michigan

Welcome to the forum, Staceygar!!

You will need to enable your email for someone to send you the information.

While you're waiting for a Dr. appt, have you read the thread at the top of the page titled: "New to Lyme..Start here" ? It is packed full of great information including a section on detoxing. Detoxing is very important while trying to recover from lyme disease. When you kill off the lyme bacteria, the toxins that are created from the die-off cause a 'herxheimer' reaction (may have spelled it wrong)...or "herxing". This is a worsening of your symptoms. The detoxing helps to flush the toxins out of your body so that the herxing isn't as bad.

I'm going to see a doctor in Oakland County tomorrow (it took a few months to get in). I'll let you know how well it goes. I don't want to recommend him until after I visit. I have not been diagnosed yet but I am expecting this to be my issue. As weird as it sounds, I hope it is :-(

Hopefully me email gets through with the three ILADS name that I have, one of which im going to right now in Romeo. I also listed a couple that the Dr. gave me for Dr's who prescribe IV's if needed as the Dr. in Romeo doesn't seem to like it.

I also attached an updated IGENEX price list that IGENEX sent me since that's the lab he uses..

Cool, I just got into Dr. L. in Saginaw after your email for Monday on a cancellation. I heard good things so soon I will be able to compare Dr. Z in Romeo, Dr. L in Saginaw, and Dr. L in Beverly Hills. I Will let you know. Hopefully Dr. M will get you in sooner....(lots of secret initials going on).

I am impressed so far with Dr. L in Saginaw. The lady on the phone sent me a bunch of forms, maps, symptom list, asked me to write out my story for the Dr, and gave me the tx for the person in charge of the Michigan Lyme association if I have a question over the weekend. All I did was book an appointment, but that's more info. than I had received from any other one so far.

It appears that someone cancelled and seeing as how I had called before in the past, but they didn't call me back some time ago, they let me take the spot.

What I can tell you is that I wrote out an 8 page report on "my story" including all of my symptoms in order, tests I have taken, tests I may want, other illnesses I was considering, etc. They also sent me a history and symptom checklist prior to going. I also attached all medical records. The Dr. appeared to look a them all and read MY WHOLE story. I was surprised at that alone as im a long winded person and wrote a lot. That had to take about 1/2 hr to do in of itself. He then came in and went over the story, my paperwork and symptom list he gives you, does his physical exam, discussed specific symptoms, and then he left and came back with his diagnosis.

In my case, he confirmed lyme exposure. He also said he would treat based on ONE positive band on a IGENEX lab, giving symptoms as well. I had four positive, but he also counts the IND as positive so in total he counted six. Only 5% of his patients are on IV and the rest oral. Due to my progressive sickness, he put me on IV, gave me a B-12 injection on the spot, and wrote up prescriptions for other related things. He appeared to be very thorough and im guessing he spent at least two hours with me and reading my stuff in total. In that time there was only about one other patient that was there so he obviously takes the time to see people (at least on the first visit, but you will pay for it).

Overall, I like him. It did cost me $ 530.00 today and that is without labs or other tests. They did give me a bill to try to recover that from the insurance company. He is off next week to go to the ILADS convention in Washington so it also appears he keeps up to date on his training. I still plan on seeing Dr. Z in Romeo for a short period to finish some testing and I may take my family there just for some blood work to test through IGENEX to see if they were exposed. Dr. Z is a lot closer than Dr. L, but I do plan on staying with Dr. L for now.

I still have the appt. with Dr. M. L in Beverly Hills Michigan Wednesday. His point of view is old reactivated viruses caused by Lyme and has written books and papers on it. I will let you know how that goes in case anyone wants to visit him. I guess having too many LLMD's is better than not enough.....

Staceygar, if you dont think Dr. M. is going to get tou in sooner, i would call Dr. Z. in romeo and see what their timeline is. I ended up getting in fairly soon on their canellation list. If your symptoms fit he may put you on doxy that day while waiting for igenex to come back.

Again, 200.00 minimum for igenex, another 140.00 for visit, and if they take urine, hair sample, and a blood draw for allergies, it could be more. You may have to tell him if you dont want some of that. He may also give you high quality supplements which can add to your bill.

I had a long conversation with someone from Dr.Z's office in Romeo. I was going make appointment there initially but base on the conversation, I thought it wasn't right for me. It seemed they try to solve most things with chelation therapy.

While I'm sure that is effective therapy, I had already tried chelation therapy in the past and it had no effect. I had explained that to them and I got the classic response that I just hadn't gone to the right doctor before.

There was a lot of money to lay down initially (I think it worked out to over $1000 with the IGenex testing) and they didn't take my insurance. My first appointment with Dr. M. cost me $40 (my insurance co-pay). It is not necessarily about the money...I am willing to see a doctor that doesn't take my insurance. I am just happy when they do. Dr. M. is around the 12th doctor I've seen to date.

Dr. Z. is not off my list...I am sure they are doing great things...I just thought I'd try other avenues first.

It's so crazy how doctors are so very threatened by a good lab. Igenex gets so many positive because they use the right testing mediums and train their techs to do the tests properly - Labcorp doesn't. Doctors that are afraid of treating Lyme will say things like that.

Many people here deal with reactivated Mono/HHV6. I had mine flare badly when I started my last round of Lyme herbs after a reinfection. I took high doses of L-lysine and it's back under control, so anti-virals and expensive treatments are far from necessary. And to put off Lyme treatments so that you can treat Mono first is only going to allow your Lyme symptoms to continue to get worse.

I had an old EBV high IGG titer that quest labs said was a past infection. I think I was exposed to mono as a kid, but the hhv6 thing is the one that showed up on labcorps that Dr. M.L. is basing this on. I do see some crazy symptoms in a few studies of what hhv6 can do and several fit. I don't know how high a 2.02 is over the high range scale from labcorp of 1, so its hard to say if studies show that high enough to show active infection. I see 1:320 or higher can be a sign in one study, but the conversion ratio is different on my test and Labcorp wouldn't tell me on the phone how to change it to fit and said that's the Drs place.

Dr. M. in Keego is another Dr. and not the one im speaking of above. I have not been to Dr. M. in keego, however, my original LLMD (Dr. Z) gave me his name to confer with about possibly having IV as Dr. Z in Romeo doesn't like it. I never called Dr. M. in Keego as I ended up calling Dr. L. in Saginaw.

Dr. M.L. in Beverly hills is affiliated with Beaumont hospitals, and Chronic fatigue treatments. He writes papers, etc. on the topic, treating that syndrome with anti-virals. He is another non IGENEX Dr. but truly believes in his labs. Whats interesting is he is affiliated with studies at Stanford, Harvard, and worked at the National Institute of Health at one point. A very smart man. His nurse told me that he is actually working on a better test for Lyme than the ones available. I hope he succeeds.

As a side note though, a relative of mine sent me a message today claiming that another person our relatives spoke to went to Dr. M. in Keego after being misdiagnosed with MONO and she credited Dr. M in Keego with saving her life as she had lyme.

Thumb area. Right now I am in bed about 90% due to the head fog, pressure, dizziness, and weakness that has progressed over the past few months. There is nothing I would like more than to get better so I can do that simple type of thing, sit and drink some coffee...

Many overcome those things with tons of detoxing and treatment for Lyme disease.
Have you been doing much detoxing?

Have you had any testing done to see if you have the gene mutations that prevent the body from detoxing well?

Ammonia is the biggest culprit in brain fog. Most that use natural products to help their bodies to detox better find that yucca root powder or Dr. J's Neuro Anti-tox, or something like zeolite or activated charcoal helps a lot. There is also a prescription only product - cholestyramine - that works well for some.

I'm sure that I speak for many when I say, please post what it is and your experience with it!! We are all looking for things that might help our own symptoms as well.

I would encourage you to do more to detox. I have a specific routine that I must keep to in order to keep up with the toxins that are being created each day from my treatments and it usually takes me most of the morning. If I slack off for a day or two, I begin to get more severe symptoms.