Victoria

Discussion in 'Lyme Disease Archives' started by wld285, Jan 2, 2008.

  1. wld285

    wld285 New Member


    Hi,
    Someone thought you might be able to help me in the search for a LLMD in N.Carolina for my brother.

    I tried The doctor search on Lymenet and was very little help. Seems like there would be alot more in that area than in my little nitch of upstate N.Y.

    Thanks for any help you could give me.

    Linda
  2. wld285

    wld285 New Member


    Thank you! What are his fees like. My brother has no insurance?
  3. munch1958

    munch1958 Member

    This crazy persecution is making it nearly impossible to find a decent doctor!

    When we do finally manage to hunt one down that knows anything about this none of them take insurance. This is putting treatment beyond the reach of so many that desparately need it.

    If I was a doc I wouldn't accept insurance either. 10 out of 10 times they have their hand in what can and can't be prescribed because of the costs involved.
  4. victoria

    victoria New Member

    I think the initial app't is high now but don't know what it is; the blood testing was the highest tho as we had him tested for all kinds of things from mycoplasma to etc.

    We now pay $225 for visits, used to be $80 to $120 when he was still able to take insurance. It may sound high, but he spends a LOT of time generally with the patient. Also there's been no charge for phone calls if the pt needs some advice in between visits.

    His travails have been chronicled ... he'd done pioneering work in treating HIV/AIDS for which he won awards... and was still treating HIV/AIDS when we first saw him in 2005. He has sold off that part of his practice, declared business & personal bankruptcy... his treating lyme and subsequent problems with the medical board has been used against him now by insurance companies to not pay him for ANY kind of medical service, not just lyme...

    & - don't believe all the articles you read about these doctors being $-hungry, I saw an article by Forbes that was extremely inaccurate about his Dr. They implied for instance that treating lyme paid for his clinic that opened in 2005 (now gone) - not! TG for the internet, if one does their homework, it's not hard to get accurate facts.

    good luck, it's hard, but seriously, very little insurance will pay these days unless you live in one of the NE states that have legislated that the insurance companies HAVE to pay.

    all the best,
    Victoria


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  5. wld285

    wld285 New Member

    Buy googling "lyme net doctors" in one of your earlier postings I, I did get a list of 6 family physicians in his area that treated lyme.

    Thank you!

    Linda
  6. victoria

    victoria New Member

    the other thing you &/or your brother should read is Dr. Burrascano's 2005 guidelines........ if he is treated for lyme, be sure that he is given flagyl routinely to break up the cyst forms.... not all docs do that initially. One of son's doctor's innovations was to also pulse meds, lets the pt's immune system recover.

    Again not all docs do this, but after watching my son deal with his strong herxes, I can say the 'rest periods' or 'vacations' between pulses of meds makes a huge difference, physically & mentally. I've also experienced this pulsing meds on the marshall protocol. The only 'good' thing is that lyme has a reproductive cycle of about 28 days (compared to strep's, which is 20 minutes!).

    Also google 'Townsend Letter Lyme' - they did a really good article in 2005, talks about supplements etc that are helpful. The more we can educate ourselves, the better. My family was just lucky, really, that his doctor was the closest Dr. who knew what he was doing... despite the fact we are so close to Atlanta.

    all the best,
    Victoria


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  7. wld285

    wld285 New Member

    My doc did not even mention that. Right ow I am fighting to get on Diflucan. Doc in city told me it would be easier if my PCP here prescribed them since liver enzymes would have to be done routinely. He was going to give me 1 pill! Ended up with 7, yesterday I took the last.

    Next week I 'm going to get a phone consult with Dr. E. I am sort of stuck here right now since I had knee surgery on Mon. I really saw some different improvements when I was on the Diflucan a couple of days.

    I really don't think he is having me take enough doxy either, since I have had Lyme many, many yrs. 200 mg. 2x a day for a week, then 100 mg. 2x a day. I cheated and tookthe 400 a day almost 2 wks. The only herxing you might say I've had was utter fatigue and exhaustion. That seemed to improve a little when I started the Diflucan.

    Am going to try to keep track of all these things and hope he'll listen to me. So far I haven't had a problem with that.

    Thanks for all your help, Victoria.

    Linda
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  8. highcotton

    highcotton New Member

    Hi all!

    I am at a really confusing point in my "therapy." I started seeing Dr J six weeks ago and am still waiting to begin IV treatment. He wants to wait 6-8 weeks from now, which would be 3 months from my initial visit.

    The reason he does not want to put me on the IV abx right away is because I have bad neuro symptoms and have been ill for many years, so he wants to try to get my headaches under control prior to beginning the IV's.

    Otherwise, he is afraid that I will herx too severely and the treatment will fail or be prolonged.

    I explained to him that I have been trying to get the headaches under control for fifteen years, but he asked me to try more meds that were in the same family of drugs I had already tried. I took the headache meds he prescribed and became ill with migraines and nausea for 10 days and had to stop them.

    DLW, the first visit was $750 and the next one was $350. Labs are additional and very thorough.

    He also provides you with a typed and extensive case history.

    However, after my first visit I had some irregular lab results that have not been explained to me yet, despite my calls.

    As for cost of IV's: Dr J told me that he combines different Abx's and pulses them, and that i could expect to pay about $20,000 for "a few weeks" of IV treatment. He said he no longer believes that it is necessary to go longer than a few weeks.

    Someone else at his office told me that one patient is in his sixteenth week of IV treatment and that the cost is $500-600 a day,depending on how many Abx you use in a day. This includes all supplies except saline bags.

    Some of the abx you use 5 days per week, so that would be $2500 per week, unless you combined abx, then you can add another $500.

    (Please note that these figures were not given to me by Dr J himself, so I can only guess at their accuracy.)

    Here is what really confuses me: I read some posts at Lymnet that generic Rocephin is now available and that many people are getting their LLMD to write a prescription for the generic drug and supplies.

    Apparently, people get the scripts filled and do all the mixing and infusions and change the dressings themselves, or have home health care change the dressings.

    The whole thing, they say, (not counting home health care) with all supplies, costs about $600 a month. This would compare to somewhere between $6000 to $10,000 per month at Dr J's! wow!!!

    Does anybody know how you go about getting your own drugs and supplies and doing it yourself at home??

    Does anyone know of a LLMD near NC who puts his/her patients on a more economical protocol?


    DLW, I doubt that your brother would be faced with these expenses if he does not have to do IV's.

    Otherwise, his costs of $350 per office visit would seem reasonable to me, given that Dr J is highly esteemed for his expertise and he is close to Charlotte.

    Good luck.
  9. wld285

    wld285 New Member


    There is no way my brother could afford to go to him. I got a list of family physicians that treat Lyme in his area, and he will check them out.

    This whole thing is truly ridiculous, especially being that Lyme is a true disease. He is not one to even go to the dr., so I doubt he will even go for any extravagant treatments, even if he does have Lyme.

    Linda
  10. highcotton

    highcotton New Member

    wld285,

    I would love to know how to get the list of family physicians; can you tell me?

    I have a PCP who is very nice but she is ignorant as to LYme disease, and unmotivated to learn more.

    I wish I knew somebody your brother could go to. He really needs to treat the illness before it gets really embedded, as mine has.

    Have you checked LYmenet? they have a flash discussion board where you can send private messages to find LLMDs.

    Ditto on the high costs!! Many people say that Lyme docs are so kind, etc, helping those of us who are sick, etc. But the rates my current doc charges are NOT kind,they are extremely frustrating!

    I know there are good docs out there. MollysTwin and Twinof Dar mentioned that they have quality care at reasonable prices from a doc in the Detroit area, i think.

    Good luck, and pleae keep trying to get your brother to a good doctor. THANK you for helping him -- not many families are as supportive as you.



  11. wld285

    wld285 New Member


    I found the family Physicians by googling "lyme net doctors" and putting in his zip code and state. It came up with the name of 6 family physicians in his town. No phone or address, just names.

    Hope this helps.

    Linda
  12. victoria

    victoria New Member

    Bottom line is we're used to insurance paying the extraordinary costs of the drug companies, and it doesn't hit home until we have to pay out of pocket. The US is the only country that did not negotiate prices with the pharmaceutical companies, btw. And, if we had institionalized healthcare, nobody would even be treated for chronic lyme here.

    So, oral abx and abx IVs are costly-- and in most states, insurance will not pay for abx IVs for Lyme, or at least for very many of them, OR for more than 60 days of oral abx, unless it's been legislated/mandated by the state law! So in most cases people with chronic lyme have had to pay out of pocket for IV abx... and for prolonged oral abx. The people to be mad at includes the IDSA and the insurance companies who do not want to recognize it, besides our gov't for not negotiating drug prices and not funding more research.

    My son's doc did not go up on office visits, initial or otherwise, until he could not take insurance. (Again, the insurance companies don't want to pay him because of his treating lyme with more than 28-60 days of abx of any kind... not because of his preference.)

    I know that my gynecologist won't take insurance anymore (her decision), and her office visit runs $150. Most specialists are expensive... and, the more they specialize, the more risk they take... and prices go up because of malpractice insurance.

    My son's doc has had to declare personal as well as professional bankruptcy because of his belief in what he's doing and his refusal to back down ... I do not think he's getting rich on out of pocket payments. The medical board would not even let him re-organize as a research institute for Lyme, btw. It was the IDSA way or no way.

    So please do not bash these LLMDs because of their prices, they ARE taking extraordinary risks to stick their necks out to try to treat lyme pts instead of having a nice 'safe' practice with little to no stress or risk ... think of all the 'do-nothing' doctors we ALL have seen and spent thousands on. Worse are people like Jacob Teitlebaum MD that charges $5,000 for initial consult for CF/FM alone.

    I am really wondering if ANY NC doctor can do more than what's been told to my son's Dr. by the NC medical board? (Unless they're perhaps currently flying under 'the radar' of the medical board.) So I am really curious to see if any NC MD will RX more than 60 days of oral abx, much less dispense IV abx, despite a pt's continuance of symptoms or herxing.

    By the way, everyone has a choice when it comes to IV abx.

    They were recommended for our son. He chose not to do it, and that was OK with his doctor... for our son's own reasons mostly, but also plus, I think, his guilt over not wanting to cost us so much -- as yes, even then it would've meant about $1,000/week out of pocket as he has no insurance.

    However, if our son HAD chosen to, he could not have done so locally, as no local doctor will take responsibility to prescribe anything for chronic lyme, much less oversee the IVs -- unless we moved him to NC.

    Would we still pay for it for him, now, if we thought it was necessary? YES-- as long as it could be given & monitored safely. We may still have to do it, even tho he's come a long way in the 2.9 months.

    WHY?
    -Because lyme can not only totally derail one's life, it can kill.

    On the other hand, I've read on lymenet and elsewhere reports made by people who did oral abx and got absolutely nowhere until doing the IVs. I've also read the reverse, where people never got better on IVs OR oral abx.

    I've also read where it took an AVERAGE of $65,000 to just get the diagnosis of Lyme!!!!! And I know others who have gone into extraordinary debt, way beyond the $65K, on other doctors' protocols for CF/FM, and other 'autoimmune diseases', with absolutely no success despite promises to the contrary ... as again there's NO magic bullet for any of these.

    Unfortunately there is no one protocol that CURES Lyme or puts it into remission. (Sounds familiar doesn't it?) Lyme is a REALLY difficult thing to treat, in other words, and there's no guarantees... just like CANCER unfortunately.

    (I have a friend who is currently undergoing cancer treatment for brain and lung cancer who has no insurance and going into debt for chemo & radiation with no guarantees etc... and certainly, despite the MANY cancer treatment centers, PRICES HAVE NOT COME DOWN.)

    Yes, it is probably well worth the risks involved to see if there's a cheaper way to get the IV abx and if it is possible to be trained how to adequately self-treat. However, I am not sure where the generic IV form of rocephin comes from, I'd be hesitant if any part of it comes from China, a very real danger today. Also, if one runs into trouble with the IV... not only might the pt be in trouble as s/he may delay going to an ER, the trouble in turn is going to show up ultimately on the doorstep of whom/wherever the person received it.

    I definitely understand if one tries to spend less: I myself have chosen to not get tested and am doing an alternative approach. (and sadly EVERY approach seems to be controversial.)








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  13. victoria

    victoria New Member

    There are many alternative approaches (Klinghardt, Cowden, Schardt to name a few), Buhner's book about herbal approaches, Salt/C, Marshall Protocol, HBOT, combinations thereof, as well as Rife machines (altho they're not cheap either, usually about $3,500) and some other things. You might want to get 'Top 10 Treatments for Lyme' by Brian Rosner.

    You might also read the article in the library here too, and consider trying Hyperbaric Oxygen to see if it helps you (Highcotton have you tried this?).

    Here's the url & title for it:
    http://www.immunesupport.com/library/showarticle.cfm/ID/6515/T/CFIDS_FM/searchtext/hyperbaric%20oxygen%20lyme
    Healing Chronic Illness at Home: Update - Lyme, Chronic Fatigue Syndrome, and Fibromyalgia Related News/ImmuneSupport.com/06-27-2005/By Jill Neimark

    The author's done Hyperbaric Oxygen every day for a long time, it kept her lyme symptoms at bay after abx failed her. The cost of a refurbished HBO machine overall may not be 'much' ($7500-$10K), compared to the costs of IV treatment. She also outlines some other alternative treatments she did that have helped her live a normal life.

    There also was someone on here last year who was in Scotland, where they had a charity set up to provide HBOT for lymies and other pts so that it was economical as their health system doesn't provide much if anything for treatment; they found it was also a real help.

    The library here also has many articles on Lyme treatments... as do the lyme organizations, lymenet etc.



    PS: no we are NOT wealthy ourselves. We have very little left.





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  14. highcotton

    highcotton New Member

    what great info! thanks so much. I will definitely check out the sites and the book you recommend.

    Sometimes it is easy to get frustrated and confused by all of this, especially when my main problems are cognitive--your info will help me assess where I am right now.

    I agree that Dr J is really taking some big risks to help us, and I am very grateful for that. I have the HLA-DR4 gene, which means there's a 50-50 chance that I may not respond well to abx.

    So you can see how I'd hate to spend tens of thousands of dollars and be left right where I started. I'll peruse everything you noted and see if my brain won't switch into gear. Thanks!



  15. victoria

    victoria New Member

    Highcotton - I hadn't heard about that ... How/why did you have the genetic testing that found that out? How much did it cost, and did you have a whole genetic screening or was it more specific? wonder how many have had it done...?

    Also another resource besides what I suggested above, is the online newsletter about Lyme (http://www.publichealthalert.org), Rosner's books, and the "Townsend Letter"- all of their articles are online and available, and they've had a couple of articles about Lyme and alternative treatments....



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  16. highcotton

    highcotton New Member

    I wish i could explain it but i can only offer my simplistic layperson's idea of it: it's a genetic variation that affects a protein on the cell wall exteriors in cartilage (and synovial fluid?)

    so that the abx sort of bounce off the cartilage cells instead of penetrating them. The spirochetes just hide out in the cartilage where they are safe until you stop antibiotic treatment, and then they come out and you relapse.

    People with this gene have a good chance of developing arthritis.

    Although most people who fail abx treatment have this genetic variation, not everyone with this genetic variation will fail abx treatment.

    At least that's my understanding of it. If you google HLA-DR4, you will find it discussed in arthritis sites,as the gene seems to be implicated in RA.

    I'm reading Buhner's book now and he does mention that Stephania works to fight against the HLA-DR4 actions. However, I have not been able to find that herb and have read that it is often tainted, and the stuff they taint it with can cause kidney failure.

    So I am still trying to figure out how to combat this darn genetic variation.

    It was Dr J who tested for and discovered that i have this -- I had never heard of it before. He certainly knows his stuff!

    I dont know the cost because it was lumped into eleven pages of other tests -- sorry.

    Actually, Vic, you make me wonder if a rife machine might be just the ticket for this. If the spirochetes could be jolted out of the cartilage, they might meet their doom.

    Or maybe I could just taser my joints -- lol.

    I will check out the rife angle...hmmm.. Thanks again!
  17. highcotton

    highcotton New Member

    the test was called:

    HLA DR DQ Phenotype


    I had the test done at Spectrum -- I think any lab can do it
  18. victoria

    victoria New Member

    I'll have to dig out my son's original testing, he had so much done too!

    But since no one mentioned it ever, I'm doubting he had that variation. Maybe that's why his pain was the first thing to start to improve. The toughest thing to change for him has been neuro symptoms, but it's suspected that the co-infections have been the reason why.

    Good luck with the Rife... there is a rife-and-lyme group on yahoo that has info, help, and files of info, too... Richard Loyd gets on it somewhat regularly (he has a very good website btw), as has Rosner and others who have had successes.

    Main thing imho is that everyone keeps updating here and on other board/s... I feel like this is such a great info site to give people possibilities to look into, since there are so many here with CF/FM, arthritis, etc. So keep us all posted as to what you try and your results...

    all the best,
    Victoria


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