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Old 09-28-2007, 03:33 PM   #1
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Join Date: Sep 2007
Location: Lansing, MI, USA
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moldemom HB User
Looking for Lyme-literate doctor in Lansing, MI

I'm brand new to this group and am trying to find a doctor to help my husband.
We live in the Lansing, Mi area. We are currently on a waiting/cancellation list with Dr. Michael Ledtke (Saginaw, MI) and we have an appointment with Dr. Arnold Markowitz (Keego Harbor) in November. I would like to find someone local if possible or a doctor who is knowledgeable with Lyme Disease that we don't have to wait forever to see. I'm willing to travel outside of the immediate area if you can recommend someone good.
Many family members have suggested we go to the Mayo Clinic. Have any of you done that? I've heard wonderful things about Mayo, but I question whether they would truly be able to help us.
Thanks in advance for your response.

 
Old 09-28-2007, 04:04 PM   #2
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Posts: 5,818
ticker HB Userticker HB Userticker HB Userticker HB Userticker HB User
Re: Looking for Lyme-literate doctor in Lansing, MI

Hi moldemom, welcome to the board!

I am sorry your husband is sick. How long has he been sick?

Below is a Lyme symptom list. You can have any combination of symptoms.

Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Headache
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Tremor
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol

It is very important to see a kowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. It is estimated that 60% of people who have Lyme are co-infected. It may affect treatment choice and progress. It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA.

The doctors you mention are the only Lyme doctors I know of in MI. The Mayo and other large medical institutions are not usually the ones to see for tick-borne illnesses. If you would like out of state doctor information, let me know.

It is also important to learn as much as possible. I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses (on-line). He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. I also recommend the book "Everything You Need To Know about Lyme Disease
(2nd edition)" by Karen Vanderhoof-Forschner.

 
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Old 09-29-2007, 01:21 PM   #3
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Join Date: Sep 2007
Location: Lansing, MI, USA
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moldemom HB User
Re: Looking for Lyme-literate doctor in Lansing, MI

Thanks for your reply, ticker. My husband's illness really started a year ago in June. He had all the classic symptoms: extreme fatigue, headache, muscle twitching, soar throat, skin sensitivity, fractionated sleep, weight loss.

Ironically, he already had 3 LD blood tests prior to this illness and all came back negative. He'd had the tests because he has a neuropathy problem with his left arm. Last fall he had a 4th LD blood test and it came back negatiive. Our family doctor decided my husband had a viral infection and put him on a drug used to treat herpes infections. After several months, the symptoms subsided to the point where he could function somewhat normally, but the symptoms never went away fully. At that time, I had no idea how useless the standard LD blood test really is. And the fourth LD test had been ordered by an Infectious Disease doctor, so we just assumed he did not have LD. Now I have my doubts.

My husband had a relapse in April '07 and a second in June. Both lasted about 10 days. This current relapse occurred in July and has been the most severe, even worse than the June '06 episode. We've been to an Internal Medicine doctor and a Rheumatologist and both have no idea what to do for him. We contacted the Infectious Disease doctor who had ordered the 4th LD blood test last year only to find out he's now only seeing people with HIV.

Thank you for your suggested readings. I have already read/printed the article by Dr. Burrascano. If fact it's on my desk top for quick reference. I've contacted the MI Lyme Disease Assoc for information. I have not read the book you suggested and will set about that immediately.

Thanks again for your response. Are you a LD survivor?

Last edited by moderator2; 09-29-2007 at 01:34 PM. Reason: Please do not post websites except as described in the posting policy section titled "How to share information".

 
Old 09-29-2007, 05:41 PM   #4
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Re: Looking for Lyme-literate doctor in Lansing, MI

Hi moldemom. I have Lyme and am currently being treated. I have also had four co-infections.

I do not even know why doctors run the ELISA or titer test when it is so unreliable.

Lyme symptoms can cycle like you describe.

Infectious disease doctors are not usually the best to see for tick-borne illnesses. I know of two Lyme doctors in MI. Dr. Michael Ledtke in Saginaw comes highly recommend. I have heard that Dr. Markowitz in Keego Harbor is knowledgeable, but I don't know if he is. I hope your husband can see someone soon and get the help he needs.

Keep us posted on your progress okay?

Last edited by ticker; 09-29-2007 at 05:41 PM.

 
Old 09-30-2007, 12:04 AM   #5
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Join Date: Dec 2006
Location: MI USA
Posts: 116
bigstan HB User
Re: Looking for Lyme-literate doctor in Lansing, MI

Hello Moldemom, I tought I'd jump into your post. I live 30 miles East of you in Howell. Dr. Markowitz is my doctor, he's brillant. There are two LLMD's in Michigan worth going to. Dr. Ledke and Markowitz. Dr. Ledke has a year and a half waiting list. Partly because he only works three days a week. It's worth the wait to see Dr. Markowitz. Don't waste the time or money to see an infectious disease doctor. They are too conservative and don't believe Lyme is in MI.
Just curious, has your husband traveled out of state? What were the names of the LD blood tests already ordered? If you haven't heard there is a lab in California called IgeneX. You can fine on the web. I suggest that your husband has his blood tested there. They deal specifically with Lyme disease. Call them and have them send you their test kit. It will contain two blood test tubes, lab requisition sheet, and a return Fed Ex clinical bag. Now here's what I did and will recommend for your husband. You have a little wait to see Markowitz. The IgeneX requisition sheet has to be filled in by a doctor in the upper right hand corner. The doctor writes in his name, license, and IgeneX blood panel order number. There are different panels. I suggest that you start with The Western Blot IgG, and western Blot IgM. This is panel #6050 and is $450.00. IgeneX doesn't bill your insurance carrier. The price has to be paid out of pocket and then you can submit it to your insurance for reimbursement.

It takes about a week for the kit to arrive. Once you have received it call Markowitz's office. Explain that you have an upcoming appointment. Tell the office manager how sick your husband is and that he has neurological symptoms. Ask kindly if you could fax the requisition to Markowitz's office to have Dr. Markowitz fill in the necessary portion of the requisition. Tell them that you wanted to have the blood results with you at the appointment. This will save time in the future. Ask them to fax it back when completed. If you don't have a fax do it by mail. They did it for me. I was suprised that Dr. Markowitz filled it out without ever seeing me. But he did!

Once my results came in, a week later I had my appointment. From my results and Dr. Markowitz's evaluation, it was determined I had Lyme that had penetrated my nervous system. I now have a picc line in my arm and am doing home infusion with antibiotics. I have an appointment with Dr. Markowitz this week. I am seeing slight improvements after 5 weeks of treatment.

If there are any questions that you or your husband has for me I will be glad to answer.

Good Luck

 
Old 09-30-2007, 12:45 AM   #6
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Join Date: Dec 2006
Location: MI USA
Posts: 116
bigstan HB User
Re: Looking for Lyme-literate doctor in Lansing, MI

One more thing, A lyme blood test is never accurate. There are a lot of false positives and false negatives. In the blood test they look for antibodies created by the body to fight off infection. However, if the immune system is so compromised by Lyme bacteria, it probably isn't fuctioning well enough to even produce antibodies.

 
Old 09-30-2007, 02:58 PM   #7
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Join Date: Sep 2007
Location: Lansing, MI, USA
Posts: 7
moldemom HB User
Re: Looking for Lyme-literate doctor in Lansing, MI

Thanks bigstan for the great information. Yes, I've heard of IgeneX and will check out their Web site. I'll need to check with the doctor's who ordered my husband's LD blood test to find out specifically which one they requested. I'm almost certain it was the stnd ELISA test.

If you don't mind my asking, after your initial meeting with Dr. Markowitz, did he order more blood tests? How long did you meet with him? Did he recommend any changes in diet or exercise? Are you currently taking a probiotic to maintain a healthy flora in your intestines while you're on the IV antibiotic? Are you co-infected? Did he test you for biotoxins?

Sorry for all the questions, it's just so comforting to "talk" with someone who's going through the same nightmare.

Have you ever taken a Visual Contrast Sensitivity test? I found this information on the Chronic Neurotoxins Web site. It's a non-invasive test that can tell a doctor in 5 minutes if the patient is suffering from the harmful effects of neurotoxins on the brain's ability to distinguish contrast between black, white and gray.

As far as traveling out of state, we usually only go to the Western NY area (Buffalo). We have family there. It would be impossible for him to make the trip at this time. Even though I would be driving, the ride itself (5-6 hours) would be too much for him.

Thanks again for all your suggestions. I hope I'm not asking questions that are too personal. Please don't answer anything that makes you feel uncomfortable or is, frankly, none of my business.

 
Old 09-30-2007, 06:29 PM   #8
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Join Date: Jun 2006
Location: Bloomfield, MI USA
Posts: 86
srocc20655 HB User
Re: Looking for Lyme-literate doctor in Lansing, MI

Hello, I CAN HELP YOU.

I live in Bloomfield Township and have Lyme disease. I was also on waiting lists for Dr. Ledkte and others. I ended up getting a wonderful, very, very Lyme literate doctor in Grand Rapids. I got his name from the Lyme Disease Association. I called him on a Friday and he saw me on a Monday! He sees Lyme patients from all over and really knows what he is doing. He does the Igenex testing, checks for all co-infections and does the vision test you mentioned.

I have been battling this since January 2006. I had a picc line in summer 2006 and am now again on antibiotics because my infection came back (or regenerated). However, all in all I feel that I continue to improve.

I never see my Dr's name posted on the Healthboards and don't like to post it. To get his name go to:
lymediseaseassociation.org. Go to the doctor referral - you will have to register. Type in your zipcode and you will see his name. He is GREAT! Please let me know if you are able to get his name or need further help!

Good luck and you and your husband are in my thoughts and prayers. There is help out there.


 
Old 09-30-2007, 10:40 PM   #9
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Join Date: Dec 2006
Location: MI USA
Posts: 116
bigstan HB User
Re: Looking for Lyme-literate doctor in Lansing, MI

Hello again Moldemom, I'll do my best to answer your questions. As you probably know the standard ELISA test is garbage. Hopefully you will get some better knowledge with a different type of blood test. Dr. Markowitz in addition to other Lyme tests like co-infections, ordered a slew of blood tests. About 30 not all related to Lyme disease. I was happy to fine an aggressive doctor to order specific tests. My first visit with him was between 45 min to 1hour. Alll my other visits have been around 20 min. He recommended changes in diet and certain foods to avoid. Prety much what everyone talks about on this board. As far as excercise, he looked at me and knew I had worked out most of my entire life. We talked about it and I let him know that I hadn't been able to work out since January 2006. I'm just too sick. One of my symptoms is dizziness and ringing ears 24/7 that never lets up. I can't even drive my cars anymore. Yes I take probiotics and I gobble down a lot of yougurt everyday to keep in the good flora. It works. No he didn't test me for biotoxins. I may ask him about this on Thursday. Are there certain diseases that you had in mind? Just curious it has me thinking. No I have never taking a Visual Contrast Sensitivity test. It's the first time that I've heard of it. I've only seen Markowitz three times. So he might have this planned in the future. Where do they do these studies? I will look at the website. Interesting stuff. I am having a brain spect scan done this Tuesday that he ordered.

When I asked about your husband traveling out of state I was curious if he think's that he was bitten in Mich or elsewhere. I myself am not quit sure. I spent the summer 2005 in MD and NY, so I might have picked it up there. Or I've ran many miles in the trails throughout Michigan so I just don't know. I never had the bulls eye rash. Did your husband have the rash?

Anymore questions let me know. You might want to take srocc20655 advice and go to the website she recommended. You may be able to see a doctor quicker.

Good luck to you and your husband.

 
Old 10-02-2007, 06:12 AM   #10
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Join Date: Sep 2007
Location: Lansing, MI, USA
Posts: 7
moldemom HB User
Re: Looking for Lyme-literate doctor in Lansing, MI

Hi srocc20655. I've been to LDA doctor referral site. I've used up 2 searches so far. Can you please tell me the zip code for your doctor in Grand Rapids. That will help me narrow the search.
Thanks.

 
Old 10-02-2007, 09:46 AM   #11
Junior Member
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Join Date: Jul 2007
Location: Bloomfield, Michigan
Posts: 22
MichiganLymie HB User
Re: Looking for Lyme-literate doctor in Lansing, MI

Zip is 49546

When you are searching be sure to go to the bottom link - at the bottom of the page to search. If you can't find him I will give you his name. Let me know. I really want to help you guys.


 
Old 10-02-2007, 09:47 AM   #12
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Location: Bloomfield, Michigan
Posts: 22
MichiganLymie HB User
Re: Looking for Lyme-literate doctor in Lansing, MI

Moldemom - I am also known as Michigan Lymie - srocc20655 - (home computer and work computer)

 
Old 10-02-2007, 12:10 PM   #13
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moldemom HB User
Re: Looking for Lyme-literate doctor in Lansing, MI

Hey MichiganLymie.
It didn't work. Not sure what went wrong, but I ended up with 2 doctor's in MN and one in MD. And I can't search again until my 30 days are up.Any chance he takes medical insurance? Thanks much!

Last edited by moderator2; 10-02-2007 at 04:15 PM. Reason: Please do not ask members to violate the posting rules

 
Old 10-02-2007, 05:01 PM   #14
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Join Date: Dec 2006
Location: MI USA
Posts: 116
bigstan HB User
Re: Looking for Lyme-literate doctor in Lansing, MI

I think this is the doctor:

DO Robert DeJonge
GRAND RAPIDS MI, 49503

 
Old 10-03-2007, 04:57 AM   #15
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MichiganLymie HB User
Re: Looking for Lyme-literate doctor in Lansing, MI

Thanks Big Stan. Yes, that is my Dr. He is wonderful and doesn't make you wait to see him forever. Without him I am sure I would be totally disabled by now.

Big Stan, Hope you are doing better.

 
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