posted
Hello Lymies, I am a newly registered participant to this site but I have lurked here and on other Lyme sites for quite a while. I have been too ill to work for the last 10 years after multi-diagnoses of fibro, CFS, ad nauseum. I had an appt. with dear Dr. J in NC earlier this month. The impetus was both my grandsons testing positive for Lyme. Both my grown children have been ill for years and when my grandsons started having health problems my daughter did an amazing amount of research on Lyme despite feeling terribly sick herself. Now all of this is making some sense. I believe that we all have Lyme. Dr. J was wonderful and spent a full 3 hours with me with one break. He is so thorough! He gave me a test form with about 30+ tests he would like me to have performed. He took blood for the Western Blot through IGenex which I will have to pay for out of pocket. Because he is an out-of-network doctor, any tests he orders from NC will not be paid by my insurance (a Medicare HMO.) I was already scheduled to see my Endocrinologist earlier this week and I took the test form in with me. His office procedure calls for blood drawn prior to seeing him. I showed his lab staff the form and after looking up most of the tests, they took over a dozen vials of blood. My Endo is the most compassionate and interested doc I see. (My PCP is sweet but glazes over when I mention anything that is new within the last decade or so.) Anyway, my Endo agreed to order all the tests which Dr. J wanted done! I was thrilled. I think he could see how desperate I am. Though Dr. J will send all his findings to my PCP (he said he writes notes that end up being 8-10 typed pages) he agreed to also include my Endo doc too. My Endo doc agreed to speak with Dr. J if the need arises. Now, my question: (sorry...long-winded...am digressing) Dr. J wants me to have a brain SPECT scan. His office made an appt. for me with a hospital near him. It is to be before my appt. with him the first part of November. I am certain that my insurance will not pay for this. Those of you who have had this test....how much does this cost generally? Also, have you found it to be useful when other test results are not yet in? My test results will be in before my visit to Dr. J but probably not to me. In addition, Dr. J's office initially scheduled the SPECT scan at the Univ. of TN Medical Ctr near my home. Dr. J's nurse called to tell me that Dr. J did not like the particular scan they do there and instead wants me to have it at the NC hospital. Anyone have a SPECT scan at the Presbyterian Hosp. in NC? Results? I have spent so much time, energy and money on health care over these many years. I am almost tapped out. I need to get the biggest bang for my buck for all this testing and future treatment. I am a bit overwhelmed but this site has answered so many of my questions and the success stories have given me renewed hope. Please feel free to write me directly or on this forum. Thanks to all of you....Janet
-------------------- DISCLAIMER: No information presented above should be considered medical advice or take the place of advice given by a medical professional. Links to other sites are provided merely for ease of research. Posts: 287 | From Tennessee | Registered: Sep 2006
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
Hi-
sorry to hear you're having a rough time. but what a difference it will make to have a great LLMD!
To answer your question, I had a brain SPECT done at Columbia Presb in NYC. It cost about $2,000.
Was it worth it? For me, the answer is yes. My MRI and spinal tap came back normal, my blood labs would have been considered neg by a regular doctor (duck).
The SPECT clearly demonstrated serious problems, the only "objective" test to do so. It helped me feel less crazy, and I sue am hoping it will help me get SS disability.
Hope this helps.. Dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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I had a spect scan done in Dallas and it too was close to $2000
The SPECT in no way changed my treatment. I had a positive Igenex Western Blot for Lyme and Bartonella. My treatment was based on symptoms and energetic testing.
I had the SPECT done for Long Term Disabiity and my insurance covered it. I would not have done it for diagnositic purposes, there are better cheaper ways to diagnosis.
It would seem reasonable to wait for your Igenex test results if money is a factor. Even if the tests are negative, your LLMD can diagnosis Lyme based on clinical symptoms and treat. A response to treatment would be more useful than a SPECT scan.
Money is a factor for me, unfortunately, in deciding what tests and treatments to get. The SPECT is one of the most nonspecific of the tests.
I reviewed my results with a LLMD researcher in NYC and he said that there are people with similar SPECT scan results who do not have lyme, and are not even ill. I wished I had asked him more questions, but I was so ill at that point.
Take care
[ 30. September 2006, 05:16 PM: Message edited by: serendipity ]
Posts: 628 | From the south | Registered: Dec 2005
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posted
A big thank you to those who replied to my post. I have enough money saved to pay around $2000 for a SPECT scan but I think I will talk to Dr. J's nurse and see if I might be scheduled for one at my next appt. rather than the upcoming one.
My upcoming appt. is to go over test results and get a plan for treatment. Dr. J requires at least 3 visits per year to maintain patient status. This is a big commitment for me to drive to NC from home and stay in a hotel. After my first appt. it took about a week to get over the fatigue of travel.
Please, if anyone else has had the SPECT scan, I would really appreciate hearing from you.
Thanks so much! Janet
-------------------- DISCLAIMER: No information presented above should be considered medical advice or take the place of advice given by a medical professional. Links to other sites are provided merely for ease of research. Posts: 287 | From Tennessee | Registered: Sep 2006
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posted
You're crazy! It's all in your head ... you need to see a psychiatrist! Love you mom.
-------------------- "Data over dogma, Evidence over egos, Patients over politics" -- one smart dude from Missouri Posts: 112 | From TN USA | Registered: Nov 2005
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
My Spect was done at Columbia in March of 2005. I think it was $1200-1400 at that time. My insurance covered it entirely. It showed moderate global hypoperfusion, consistent with lyme. It was worth doing for me, since many of my other tests had come back normal (including Brain, C-Spine and Lumbar MRIs and spinal tap)
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
One other thought, can you take the prescription from Dr. J to an in-network dotor to order the test? It would require a bit more work but then it would be covered?
Unless money is absolutely no issue for you, I would find ways to save money on the SPECT as this disease can get quite pricey to treat. Especially once it is chronic.
Posts: 628 | From the south | Registered: Dec 2005
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posted
I had my spect at columbia presbyterian....this test is very specific as long as you dont have the other three things that it may be...it is a very useful test in that it show there is a problem...however they now do both tests..the pet and the spct at the same time...the pet is another important test as it will show if the brain has been damaged from the lyme...often the pet will show a normal brain...as the spect will show sick cells...this is what my doctor told me and he is a lyme neuro.... eric
Posts: 593 | From long island ny | Registered: Apr 2006
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posted
Thanks again to all who replied to my question!
I hope I didn't sound as if money isn't a huge issue for me because it is. I am living on disability income and a small amount from an IRA I inherited when my mother died.
Getting diagnosed and treated for Lyme seems to have gotten even more difficult in the last few months, according to what I've read here. So knowing how to spend limited funds is more important than ever.
None of my treatment will be covered by my HMO insurance. And the local infectuous disease docs are worse than DUCKS....they are swine.
I will be reading carefully to stay up-to-date since this is the one place I've found where knowledge flourishes.
-------------------- DISCLAIMER: No information presented above should be considered medical advice or take the place of advice given by a medical professional. Links to other sites are provided merely for ease of research. Posts: 287 | From Tennessee | Registered: Sep 2006
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posted
I turned down all of hte SPECT scan and MRI's until my insurance owuld pay for it. My blue cross put it towards my deductible, however, I did get to pay Blue Cross's expected payment. You can find out how much the SPECT costs by calling your insurance company and the hospital.
He probably wants you to have it done at Presbyterian in Huntersville or Charlotte. I think that this test is not something you HAVE to have, especially if you don't have the money. You have to realize that your treatment for LYME is going to be very expensive, regardless of what is covered by insurance.
Dr. J. will tell you that you do not have to have the test done, especially if the bloodwork comes back positive.
Be careful about the antibiotics when you go on them. Be sure to start taking a probiotic, maybe even now. I almost died from all the antibiotics and it has taken me a year to recover from being toxic and not knowing that i had Yeast of the gut.
Use Dr. J's nurses as much as you can and be sure you go there there and no other doctors where you will be just wasting your time.
If Dr. j isn't available, ask for his nurse C.R. who is excellent.
His first visit with you will be the most comprehensive. After that, you almost are better seeing his nurse C.R. who spends a lot of time with you and knows everything about lyme.
Good luck to you! Email me if you want, I rarely go on this post, so send it to my personal email.
Posts: 75 | From NC | Registered: Dec 2004
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JRWagner
Frequent Contributor (1K+ posts)
Member # 3229
posted
Everyone is forgetting an important issue here.
Dr. J is being watched very closely by the Idiots in the NC State Medical Board, and he has to back up his diagnosis with hard evidence, which the Spect Scan is.
TNJanet...perhaps your endo can order the SPect Scan just like he is ordering your Blood Tests...through the insurance carrier so you are not out of pocket.
A positive Spect Scan will be powerful evidence that "Something" is wrong, and, with the absence of other possibilities, a Lyme Diagnosis will hold water.
Peace, Love and Wellness, JRW
Posts: 1414 | From Ny, Ny | Registered: Oct 2002
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