a doctor contacted me..

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ShelETN
Regular Member


Date Joined Sep 2010
Total Posts : 49
   Posted 9/10/2010 6:33 PM (GMT -7)   
well ok it was an assistant. I got a list of lyme dotors from another website and looked them all up on the internet and decided what the heck might as well give one a call. well i called one this morning and left my name and number on their answering machine and in 10 minutes an assistant called me back. i am sending her my symptoms via email and other diagnosis' so the doc can take a look at it and evaluate me...what do ya think????

oh yeh sorry for the lower case letters my brain tonight just wont allow me to do anything else....weird....

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35855
   Posted 9/11/2010 9:54 AM (GMT -7)   
Hi Shel!!
Don't worry about what your brain will & will not allow you to do - a lot of us have or are going through the exact same thing!! I usually can't post anything once I get tired!!!

I say CONGRATS!!!! Stay on course to get in to see this LLMD!!! Provide all of the info you can possibly get to them! You need to start on treatment asap. No reason to let it go any farther than it already has.

Please let us know as things develop!!
Blessed are we who can laugh at ourselves, for we will never cease to be amused!!!! :)
May we all find peace along the journey to find healing.
"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP
Trav

ShelETN
Regular Member


Date Joined Sep 2010
Total Posts : 49
   Posted 9/12/2010 6:26 PM (GMT -7)   
i am so disappointed in the info the doc sent me. nothing about even getting a diagnosis, no bloodwork just wanting me to come down for a week for voodoo treatment (hyperbaric chamber, foot baths etc). i do believe in alternative medicine but i need traditional treatment as well, i.e antibiotics! AND I NEED A DIAGNOSIS!!! the price was gonna be $4000. cry WHY IS IT SOOOOOOOOOOOOOOOO HARD TO GET A DOC WHO IS KNOWLEDGEABLE about THIS DISEASE????? sorry, just had a rough day and my brain is overloaded and i just need to scream....how long do i (we) need to suffer??????? i am hurting so bad and feel like i am having a meltdown. and i also read everyone's posts and they are in the same boat. i am getting worse by the day. and i got bit by a dog ( i am a dog groomer)....sorry just a crummy day..... cry

+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 9/12/2010 7:17 PM (GMT -7)   
ShelETN, I am so very sorry to learn of all your struggles!

Just as many regular Drs are charlatans (etc), so do many alternative Drs practice 'voodoo' for money.

There are a few folks on this board who can find an LLMD in your area, IF you ask and IF There is one -- hopefully someone who accepts your insurance and will do their best to properly test and then treat you.

I'm w/ you right now -- I am pro-abx at this point and once I feel I'm kicking some real 'A', I will look into some 'alternative' treatments for building up the immune system.

Others here may (probably ) disagree. But I think a treatment costing $4000 right off the bat seems very fishy. Esp w/o a diagnosis based on SOME kind of testing. No blood work either??

I sure don't know how long we have to suffer w/ this. I am much better of fthan many sufferers here, but in ways, I am worse. I don't know how long we are supposed to take this!

Anyway, SehlETN, I don't know how you will find a DR knowlegable of this disease. Partly because they are stubborn and don't want to deal w/ it. Partly because if they DO care and begin to treat you, they face threats and possible ruin.

ShelETN, Please do some research on this, and I think will you may note that not all alternative Drs are productive! And some are amazing! And I don't know how you will ever be able to determine if the Doc you go to is competent!

Just PLEASE make sure to get copies of your bloodwork and THEN share that w/ us

Post Edited (+Lyme) : 9/12/2010 8:20:29 PM (GMT-6)


Mamyou
Regular Member


Date Joined Aug 2010
Total Posts : 317
   Posted 9/12/2010 7:45 PM (GMT -7)   
From one who has been taken many times for thousands of dollars...there is no way I would cough up $4,000 for what this person was offering. Fishy is the perfect word. RUN is another one that comes to mind. Find a LLMD with a track record. You may drop $4,000 for that but at least there's hope. I, too am pro-abx at this point because I think a certain number of the critters must be downright slaughtered before even thinking about building and re-building. As has been stated many times in this forum, there is not just one answer for everybody...each one of us has to find what works for us.

Deejavu
Veteran Member


Date Joined Aug 2005
Total Posts : 4297
   Posted 9/12/2010 7:59 PM (GMT -7)   
Hi all,
 
The hyperbaric oxygen chamber is not voo doo according to Brooke Landau who had crippling chronic lyme:
 
 
 
"She experienced short-term memory loss and loss of hearing in her left ear. She began to lose sight in both eyes, developed heart arrhythmia, gallstones and colitis. She lost 30 pounds from her already thin frame – at one point the 6-foot-tall former model weighed 120 pounds.

She has undergone various invasive procedures and treatments that included taking 27 pills a day.

"Yet nothing has restored me to the pain-free condition I once knew," said Landau, who has undergone seven spinal taps and two surgeries.

In 1996, Landau moved to Miami in hopes a warmer climate would lessen her joint pain. But, as the illness progressed, so did the pain.

She eventually met a doctor who Landau said saved her life.

By undergoing experimental treatments five years ago, Landau is able to do everything she could before – including working out at a gym, salsa dancing five days a week and playing volleyball on the beach. "None of which I could do for years," she said.

"Brooke is a fighter," said her father. He remembers when she had several operations as a baby to correct a congenital heart defect. "It made her very tough. As a child, she always knew what she wanted. Her stick-to-it-iveness really showed during her illness. We're proud that she's never given up. But nobody should go through this stuff."

Because she was considered a research subject, she wasn't responsible for the medical costs that mounted to several hundred thousand dollars.

Treatment consisted of pumping high doses of antibiotics into her heart for 24-hours a day for two months. She also underwent 30 days of treatment in a hyperbaric oxygen chamber."
And foot baths are a must for anyone who wants to get better.
 
Denise
It's all about Detoxing Daily, strengthening the Immune System mixed with a dose of Positive Thinking!
 
This song is about my years with chronic lyme since 1995 and being symptom free for over 4 years:  http://www.youtube.com/watch?v=ds81S61UvPA
 
Currently taking Estrovera, ProgX (progesterone), Adrenotone Plus, CoQ10, Vitamin B Total, C, Green Vibrance, CALM (Magnesium/Calcium)

ShelETN
Regular Member


Date Joined Sep 2010
Total Posts : 49
   Posted 9/13/2010 1:39 PM (GMT -7)   
Thanks for all the replies. I would be willing to go to Timbuktoo (sp) for any doctor who is worth it. I just felt like in my case I NEED traditional meds etc. to start with. I totally believe in alternative treatments when traditional medicine just isn't do the trick. But the way it was proposed to me without the mention of any type of diagnostic testing or consultation just handing over $4000 for a week of detoxing seemed unrealistic.

Has anyone ever heard of spider bites carrying Lyme or maybe even mosquitoes. What about West Nile Virus?? Is that self limiting and does not cause any chronic symptoms? I may be barking up the wrong tree on the Lyme disease but that is why getting a proper diagnosis with actual blood work as "grounds to stand on" is so important to me. So my search continues....

Simela
Veteran Member


Date Joined Aug 2010
Total Posts : 552
   Posted 9/13/2010 1:51 PM (GMT -7)   
THere are at least 2 LLMDs here in PA that charge $1000 or more for the first visit. THey do not accept any insurance. There is another that charges $500 for the initial visit. That one does not accept insurance, either. It is hard to find an LLMD that accepts insurance. I'd be the happiest person to find one that accepts my insurance, so I will keep looking...

You should post a new thread here and on lymenet.org and someone will contact you with LLMDs contacts in your area. If the dr you are talking about is using oxigen chamber, it is not cheap, so maybe that's why he came up with that amount. I don't know, but those machines are probably a fortune, so they need to charge a lot to pay for them. I don't know, I'm just giving him the benefit of the doubt. If you are not comfortable, you should keep searching for another dr.
As far as I remember reading, Brooke L did a lot of abx, not just the oxigen chamber.  As dr. B said, we are sick because we are infected and we need abx, not (only) oxygen.

Post Edited (Simela) : 9/13/2010 2:55:53 PM (GMT-6)


Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35855
   Posted 9/13/2010 1:51 PM (GMT -7)   
Any critter that can bite some animal or person that has any of these tick-borne illnesses & survive to bite again can pass on these diseases.
You most certainly can use abx & get some positive test results!! Keep working on that, don't give up!! Abx work the best if it's within 3 months of the onset of symptoms, a lot of people do get well on abx alone, but if they don't work, please realize that there are other options!!
Blessed are we who can laugh at ourselves, for we will never cease to be amused!!!! :)
May we all find peace along the journey to find healing.
"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP
Trav

ShelETN
Regular Member


Date Joined Sep 2010
Total Posts : 49
   Posted 9/13/2010 6:55 PM (GMT -7)   
my husband thinks me having lyme disease is a long shot. i have researched Lyme alot and everything fits more than any other disease. i feel like i need to eliminate one thing at a time....maybe its not lyme....is it MS?? Lupus?? FMS?? i feel like my brain is going to explode....not enough hours in the day to search for doctors who might be able to help and limited funds available for treatment. i would love to take a leave of absence from work just to rest and focus on ME. but that wont pay the bills.....i get so frustrated....thanks for letting me vent on here....i dont even kow if what i just posted has anything to do with what the original post was.... smhair

Mamyou
Regular Member


Date Joined Aug 2010
Total Posts : 317
   Posted 9/13/2010 7:43 PM (GMT -7)   
I don't think it matters if we always make sense or even if we continue a thread that stays on topic. I feel very welcome here and I've so enjoyed seeing how new members are always warmly greeted. I've also learned tons. We're probably all nuts, at least part of the time.....

I am so tired of trying to stay alive, yet I'm still fighting. ShelETN, maybe you have lyme and several co-infections. I don't think lyme is a longshot at all. The more I read, it's an epidemic.

Oh, yes, by the way. If hubby thinks it's a longshot, buy the DVD "Under Our Skin" and make him watch it. He'll appreciate your efforts more once he does.... I've been lending mine to everybody I know....Take care.

Willowrose
Veteran Member


Date Joined Oct 2009
Total Posts : 699
   Posted 9/13/2010 8:16 PM (GMT -7)   
ShelETN, I am surprised any doctor would suggest a treatment plan without at least doing some tests first to shed more light on their clinical diagnosis and to see what else might be of concern. In my experience, LLMD's are expensive, and I've yet to find one that takes insurance, but if the charge is $4000 for the first week of treatment, I'd sure want to know what is the anticipated cost for treatment after that? And before I'd make an appointment for a week of treatments, I'd sure want to know the long-term plan for treatment as well as what testing would be done.

I found the LLMD I see via ILADS. I believe FeelingBetterNow also can provide LLMD info. And, of course, asking on the Lyme forums will give you lots of information from people whave actually seen the doctors.

Good luck with your search.

Rose
I have Lyme; it doesn't have me.

+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 9/13/2010 8:21 PM (GMT -7)   
Shel -- You certainly need some good blood tests. And as inaccurate as most Lyme tests are, you may STILL gain some kind of insight, or clue regarding which way you need to turn.

I say this because it is virtually impossible to prove that you do NOT have Lyme. However, it is possible that they may show Babesia or another co-infection, or chronic virus, that might support a Lyme diagnosis. A good WB is one. And altho the lab thru which you must go because of insurance is not the most sensitive, you may still receive some answers. And also, some DRs even diagnose according to a CD57 test.

After 3 yrs, I have come to realize that most other people are in denial about Lyme, just as your husband is. But YOU know what you feel like. I think you need to persue this
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
 
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.

ShelETN
Regular Member


Date Joined Sep 2010
Total Posts : 49
   Posted 9/14/2010 6:36 PM (GMT -7)   
saw my old PCP today...told her what is going on. she ordered a lyme IGM and IGG lyme titer and western blot!!!!!!! sh also is sending me to a neurologist in case it isnt lyme and she tested for west nile and gave me a b12 injection (my b12 was 258) wow what a difference!! there is hope!!!!!!!!!!!

+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 9/14/2010 7:07 PM (GMT -7)   
ShelETN, Did you request copies of all your labwork? If so, please let us know! We are neither lab techs nor DRs, but a bunch of us know what to look at/for on the WB. I am praying that you find some answers!
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
 
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.

JenShakes
New Member


Date Joined Sep 2010
Total Posts : 7
   Posted 9/14/2010 10:32 PM (GMT -7)   
All of this makes me soo angry.
The insurance companies the labs, it all.
 
Makes me wish I never ever planted a single flower
outside, *I used to love gardening.
Or even hung bird feeders, cos I would stand in the bushes.
 
Makes me wish I never went outside.
 
Shel, you are not alone, I too just want answers.
Diagniosis and just not knowing is torture.
I will be thinking about you and wishing you well.
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