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Ila
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| Joined: | Fri Oct 5th, 2007 |
| Location: | Lenexa, Kansas USA |
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Posted: Fri Jan 29th, 2010 04:33 am |
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| Hang in there. People are finally getting into see the DR. Yes the wait is long, but eventually you will move to the top of the list. You may want to call the hotline to see if you could travel to a Dr out of town. Take care.
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Becky
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| Joined: | Fri Apr 10th, 2009 |
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Posted: Sat Nov 7th, 2009 03:04 am |
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Ila, I was never called by Dr B's office. I have called them repeatedly, begging, and have never turned down an appt. I would never pull a no show on a Dr such as Dr B. The last I was told when I called this office was that they'd had a meeting and it was clear that the wait would be at least another 6 months to never.
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Ila
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Posted: Sat Nov 7th, 2009 02:03 am |
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If you were called for and appointment and did not call back in then you may have been dropped for the waiting list. If you miss an appointment then they usually won't reschedule you either. The wait list is very long and just last week a new patient didn't show up that is one more sick person that may have been helped. Please these doctors are full and if you are lucky enough to be on the list then show up for your appointments.
I would call and check to see if your still on the list.
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Becky
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Posted: Fri Nov 6th, 2009 04:19 am |
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Kathy, I apologize profusely. I'm sorry, but I have found more than several Dr's names on this board. And it was a person in this forum that told me this Dr was on the Board of this association. A Family Practice MD specifically referred me to him around June of this year.
The PCP who referred me to him stated he was 'Passionate' about Lyme. This LLMD told me that his children were infected and that is how he got started as an LLMD.
I do know that he worked for a time w/ Dr. R in KCMO, but that he couldn't handle the hours and left that practice, as well as his former practice at College Park, to dedicate his study/practice to Lyme.
I am sorry, I did not know anything about his decision to stop treating Lyme. I last saw him the end of July and he refilled my Amox script in late Sept. So I don't know anything about what happened w/ him.
Also, I sent you an email regarding the practice you suggested to me. The Dr I saw there laughed at me, as well as the referral. He was not respectful at all. He stated that he was not knowlegable of Lyme, nor was anybody because it is so very rare. He stated that there have only been a 'handlful' of cases in KS.
He had no answer to my question: If Lyme is so very rare in KS, WHY are all the LLMDs full up and no longer taking patients?
Needless to say, I am still desperate for a Dr who can help me. I am out of money and credit, so I must find an LLMD that my insurance accepts. I believe I am not even still on Dr. D B's waiting list, as, after putting me on a 9 mo waiting list, I was then told the waiting list was 6 months and within days, was told he is taking no new patients.
Back to Square One....
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Kathy
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Posted: Fri Nov 6th, 2009 03:52 am |
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Becky,
Lyme doctors in many states, including Kansas, are having their licenses threatened. Therefore, we don't post doctors' names on this board. If you want to give people information about doctors, please have them email you privately.
The doctor you referred to is not on the board of the Lyme Association, does not take new Lyme patients, and does not want to treat Lyme disease. Despite his skill, he has decided not to be a Lyme doctor.
Kathy White, Corresponding Secretary
Lyme Association of Greater Kansas City
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Becky
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Posted: Fri Nov 6th, 2009 03:30 am |
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Amanda, I don't know my KS geography very well, but there is a LLMD in Wellsville, KS by the name of Dr. J. I believe he is on the board of this Lyme Association. He does not take insurance, but keeps his fees much more affordable than most LLMDs. He also gives you a form/receipt that you can submit to your insurance company
He knows what tests to order and he knows about the levels of abx needed, as well as length of time on them.
Let me now if you are not able to find his contact info -- email me at bwtoto @yahoo.com. (close the space between bwtoto and yahoo.com)
Last edited on Sat Nov 7th, 2009 02:05 am by Ila
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Kathy
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Posted: Mon Nov 2nd, 2009 01:17 am |
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Amanda,
You need to get back on antibiotics as soon as possible to have the best chance for a full recovery. Lyme doctors are finding that 200 mg. of doxycyline a day is not a high enough dose for many people. Many Lyme specialists prescribe 300-600 mg. (3 to 6 pills) per day. That's hard for the stomach to tolerate. A study in Europe found that 400 mg. works better than 200 mg. Lyme doctors have found that treatment needs to continue for at least one month or more after all signs (rash) and symptoms are gone, which can mean several months of treatment for the early stage. Other antibiotics may be needed for some of the coinfections.
I can send you a list of Lyme doctors in Kansas City and other parts of Kansas if you email me privately at Lymefight@aol.com. I can also email you information papers that you may be able to give to you doctor to persuade the doctor to continue treatment longer. One of the papers is titled "Why isn't 3 weeks of antibiotics enough for Lyme disease?"
You may want to go to the website http://www.ilads.org and download their "Basic Information" paper that tells about treatment. That website also has Dr. Burrascano's 37-page booklet of Lyme disease treatment guidelines which might interest your doctor.
Kathy
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Ila
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Posted: Tue Oct 27th, 2009 12:56 pm |
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| i will try and send you the AG's findings on the 28 days of treatment being faulty.
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amandarg@k-state.edu
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Posted: Mon Oct 26th, 2009 07:14 pm |
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Thanks, Yes, I have just finished my first round of doxy and am still getting worse which was when I started to worry. I'll try contacting my doctor who is very reluctant to do anything different from what the CDC guy he consulted has said which is why i've become a bit frustrated as I think I probably need another round and some more tests to look into other infections that I may have.
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Ila
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Posted: Mon Oct 26th, 2009 01:38 am |
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stay on the docy. the die off of the bacteria seems to make people feel worse before the get better. Everyone I know who started treatment feels more tired or has more pain in the initial treatment. Most of the KC doctor's are full with so long a waiting list they have closed the waiting list for new patients at this time. I can send you a lyme packet and You need to know that 28 days is not enough treatment if you are still having symptoms.
The Attorney General in Connecticut investigated those 2006 guidelines and found them faulty. A copy of this findings is on the internet and should be taken to all doctors you are seeing.
Also Co-invections are a big problem when discussing tick born diseases. many people have 4 or 5 other infections besides the Lyme or borillia , most of the continued symptoms is from a multi infection.
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amandarg@k-state.edu
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Posted: Sun Oct 25th, 2009 10:41 pm |
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I have just finished up my first month of doxycyclin but my headaches and pressure in my head are getting worse and I'm starting to think I should go and see a specialist rather than the local doctor. I have an appointment with a neurologist but it's not for another month and I really don't want to take a chance of more damage/permanent damage to my body. Does anyone know of a good doctor I should contact. I live in Manhattan and just moved to KS so I really don't know any doctors out here. At this point I'll drive to KC or where ever.
Thanks
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