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Posted 8/17/2016 11:30 AM (GMT -5)
I got an appt. with an LLMD in Manhattan. It is mid September and of course he doesn't take insurance. Has anyone heard of, and/or had success with a Dr. Y - he is trained as a neurologist. He does lots of testing for neuro/nerve lyme which I am most concerned about. Thanks.
Posted 8/17/2016 11:37 AM (GMT -5)
So you got the name from ILADS?
Posted 8/17/2016 11:39 AM (GMT -5)
I think so. I'll go check. I was keeping a running list of NY lyme doctors and most were from the list - however, I couldn't get into any of them. I'll go check.
Posted 8/17/2016 12:07 PM (GMT -5)
So excited I just called Dr. R's office (I called him first as soon as I was bitten but it was a three month waiting list). I was first given November and I took CD's advice and asked to be placed on the WL. I just got in for next week - August 24. Why am I excited? I have Lyme and have to spend an obscene amount of money which I could have gone on vacation with - and I have to cancel two vacations this summer. This is one crazy disease. Thanks CD for the advice! And thanks Trav, Cd, Girlie, Peteza (and if I forgot anyone I'm grateful to you too!)- for being on top of me to see an ILADS only. You guys rock.
Posted 8/17/2016 12:08 PM (GMT -5)
I think he is in zip code 10021 and if that is the right one, he is ILADS.

I don't know anything about him but he is a neurologist and that makes me leery because of my past experience of going to a neurologist when I first had lyme. He was ready to put me in debt with all the tests he wanted to run.

I wanted to add that even if it says a doctor is ILADS trained, I think you just go to a seminar and get your name registered. One seminar is all it takes. This is my understanding and if someone has better information on this, please let me know.
Posted 8/17/2016 12:12 PM (GMT -5)
Peteza,

Hi. Yes you are correct but I am canceling Dr. Y. I called the famous Dr. R. (who I called right after being bitten but was too nervous to wait three months) and I am seeing him next week. Thanks for everything.
Posted 8/17/2016 12:16 PM (GMT -5)
Awww, glad you found an ILADS doc!!
Posted 8/17/2016 12:18 PM (GMT -5)
Is he on 7th Avenue???

Please remember to fill us in on how you like him and what he suggests!!

I'm excited for you getting to see him.
Posted 8/17/2016 12:22 PM (GMT -5)
Yes that's him - 7th avenue and my first born child as payment :)

Since my usually self sufficient, independent and resourceful personality has been taken over by a new very needy, cannot make a decision, and need to constantly ask questions like a child, personality - you know I'll be updating you!

Thanks for the support.
Posted 8/17/2016 12:23 PM (GMT -5)
You made me laugh -- thank you!!
Posted 8/17/2016 12:27 PM (GMT -5)
:) Us Lymies need extra laughter.

I'll be updating you all after my appointment and posting my gofundme page at that time - don't worry that is another joke
Posted 8/17/2016 3:10 PM (GMT -5)
Huddie you are completely right - this is an expensive illness. You were lucky to start treatment on time. I was undiagnosed 5 years. I gave a fortune during those 5 years to various doctors that didn't know what is wrong with me and gave me wrong treatment. I got cortico shots that wreack havoc on my immune system. And now I continue to give money for Lyme treatment. I cannot work and I depend on my parents.
I want to give you one advice - make a list of questions for your LLMD for the 1st appointment, it is helpful, because otherwise you may forget to ask something important. Meanwhile, while you are waiting for your appointment, don't forget to do detoxing. Best of luck!
Posted 8/17/2016 3:17 PM (GMT -5)
Blueberry,

Thank you. I am so sorry you are going through all that you are going through. I agree it is life changing and not in a good way. Spiritually, it is said that everything brings a gift, so I am trying to figure that out. I was about to start a new job that I am beyond excited about. I am not sure I can do that now. I have been stalling in hope I have a miraculous recovery. I didn't have an excellent immune system to begin with but overall healthy lifestyle and dealt with fibro. for the past four years. I have a very detailed time line and list of everything I have been doing. Thanks for the question advice. I would not have thought about that. Not even sure what I will ask. Everything I want to know will not have an answer "When the heck will I feel better????" "Why do you charge so much?" The price of the visit is crazy. I better leave completely cured.

Are you better now? Did you do abx/herbs? I hope you are finding comfort and healing.
Posted 8/18/2016 1:48 PM (GMT -5)
Thank you Huddie.
Well, it is difficult to say if I am better - I am only 3 months in the treatment, some things are slightly better but others are worse, so I don't know what to say. I am on abx.
I see some obstacles in my treatment but it is so difficult to address them - for example, stomach issues, because of them I can't eat enough.
How much does it cost, the appointment with your LLMD? I am in Europe and it would be good to know what are the prices in US.
Posted 8/18/2016 2:43 PM (GMT -5)
Blueberry,

Hi. I'm sorry it is getting worse before completely better. Are you doing herbs as well? Sounds like the antibiotics. Are you taking probiotic and eating very well? I think that really matters. The angels on this board told me about Alka Selzer Gold for tummy troubles and it really works. The doctor is insanely expensive. He is $900 for the visit. It is two hours long and he is very well known lyme doctor in Manhattan. He has a long waiting list and I got very lucky. Although I am now thinking "what can he possibly do worthy of that much money and will there be tests that add up on top of that?" So thinking of canceling. I feel I just need to go so I will know I have done everything for my health. Let's face it most of us have spent so much on doctors trying to figure out what we have. I'll view it as one stop shopping and since I was too sick to go a vacation this summer I'll view the doctors office as my summer vacation - he better have a pretty office! Aint Lyme grand?

I drink a smoothie every morning with Coconut water (electrolytes) and spirulina mana and half a banana or avocado and ice. It really helps me to feel better and is easy on the digestive tract. Perhaps that will help.

I hope you feel better very soon.
Posted 8/18/2016 3:51 PM (GMT -5)
And I thought my $640 yesterday was expensive. Even though I have easily spent well over $40,000 to date and that may be a little on the conservative of estimates.

I would go and see what he says. Then you can decide if he is worth investing in further.
Posted 8/18/2016 3:55 PM (GMT -5)
Krimpet,

$40K? What??? How?? Did you go to a healing center and live there? Ok feeling much better about things now. Do you also live in a very expensive city? Thanks for sharing your story. So this gets very expensive fast. I hope it has all been worth it for you and is helping.
Posted 8/18/2016 4:07 PM (GMT -5)
I've been at this for 2 years. In the beginning I was seeing different doctors because no one knew what was wrong. Out of pocket for most of them. Oh, can't forget my $7,000 nutritionist. Actually she is more like a NP. She was a huge, huge help, but still didn't solve the puzzle. Actually as our time was rounding down, she did do some reasearch that led me to some of the viral things I have. She did help a lot with diet, adrenals, SIBO, etc. I finally found a doctor in March of this year who began to put the pieces together (well at least some of them--the ones that matter). Was doing acupuncture for about a year. And yes, I was at a clinic in FL. That was a tremendous help as well. So yes, Huddie it does add up.
Posted 8/18/2016 5:04 PM (GMT -5)
Krimpet,

Well I guess two years of doctors, supplements and alternative medicine can add up. How long did you have Lyme before being diagnosed? How are you now? I mean are you up and about - always eager to hear how others are doing. Have been thinking about acupuncture. Do you think it works well for Lyme? Again, so sorry you have gone though so much. How did they treat at the clinic? I am really wanting to avoid IV abx. Do not want to that route at all. I hope you are better now and that next weeks mad money goes to vacations and fun.
Posted 8/18/2016 6:02 PM (GMT -5)
Well here is the thing. I fall into that group of never been bitten and tests are not absolute. The only thing I know definitely is that I have EBV, HHV6, and mycoplasma. But treating nevertheless. Yes I'm up and about. I was very tired earlier this year before I went to the clinic. No abx at clinic. Just ozone, nutrition, and other services. I probably should have stayed at least another month. Most people stay minimally 3 months, but I was homesick and that wasn't helping. But I came home much better than when I left and that was only after 5 weeks.

I stopped acupuncture once I began to get more anxiety after the sessions. One of my doctors said that can happen with adrenal fatigue. So not sure what that was about, but stopped.

I'm actually getting ready to start ozone again, once a week. So no mad money yet. I seem to be doing better since I added monolaurin into my regimen. But it's still up/down.
Posted 8/18/2016 6:42 PM (GMT -5)
Krimpet,

Hi. Thanks for updating me. It really helps to hear the stories. My internist said many people have EBV in their bodies - that it isn't necessarily worrisome. I have weakened adrenals as well and staying way from caffeine and sugar help a lot. Have you had your cortisol levels checked? Usually weak adrenals/anxiety can mean high cortisol levels which make us feel lousy. Health mysteries are pretty awful. Glad the monolaurin is helping. Were you tested for candida? That can also make you feel lousy and monolaurin helps candida - the candida diet in general will make you feel better. Love that the place in Florida wasn't antibiotics. I may look it up - if you tell me a town. I don't think we are allowed to name places but maybe I'm wrong about that. I'm glad you are home - I think that is its own healing and comfort. I have heard very good things about ozone therapy. I may look into that and will avoid acupuncture for the reasons you mention. I hope you are feeling more energetic.
Posted 8/18/2016 6:57 PM (GMT -5)
That's true. 90% of the population has it and for most it presents few problems, however it is a common cause of CFS. I know for a fact that my EBV is very active and wreaks havoc. Over the last 3 years I've become very versed in a lot of health issues, SIBO, Candida, adrenals, gut health, to name a few. I've learned a lot working with so many doctors and nutritionists and also doing a lot of research on my own. I can't tell you the number of different tests I've done for Candida and that's never been an issue. I've had other things appear on stool tests, etc. As far as adrenals I order my own test and treat because I've done at least 12 tests over the last 2 years. When I was doing ozone it was lowering my EBV numbers and I was feeling much better. So for me EBV, HHV6, etc are definitely my fatiguers which is why I reacted so positively after only a few sessions of ozone.
Posted 8/18/2016 7:28 PM (GMT -5)
25 k one year in ....enjoy the fruit ..once you start abx no more anything that tasts good ...not a club you wanna be in for very long
Posted 8/19/2016 8:03 AM (GMT -5)
Krimpet,

Hi. I am definitely going to try ozone thanks to you. I am sorry you are going through so much but it sounds like you have surrounded yourself with very good helpers and I hope you have regained some energy. How is the at home adrenal test done and what has helped you to heal them? I have been better since cutting out all caffeine (was never a big coffee drinker but love a cup of tea in the morning and would sneak coffee in now and then) and doing meditation. I also stopped watching any television and will read at night which helps with anxiety and a better sleep. I slept three nights this week without waking up - a miracle.

Bluelyme was does 'enjoy the fruit' mean? sorry don't understand - oh maybe meaning the candida diet, no fruit? I still have 1/2 banana but not I need to stop. I did over four months of it in 2014 (I joined this board for candida which I don't see as a topic any longer) and it helped a lot.

Feel better everyone.
Posted 8/20/2016 8:49 AM (GMT -5)
thank you Huddie

no, not on herbs, my LLMD goes abx route, so I need to take this route as well, but I'm thinking about starting some herbs just to help abx to do their job better...
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