posted
Hi Everybody,I want to let everybody know how I made out today. And how I am doing after the scary weekend and with being so ill Sunday night and everybody's help and calls. There are no words to let everybody know how wonderful you all are in my heart for being there for me at my darkest time. And to give everybody and update on how I made out today with getting the help I need I met with my primary doctor to start and to get him on board with what was about to happen.and then I called my Lyme doctor and he called me back and talked to me for 20 minutes to set up treatment and he checked with me if I was able to get a port and yes it is scheduled for Thursday morning at 7:30. and everybody is working together which is awesome they are no all happy about the port but it is not there call it is my call and I have been told by my Lyme doctor it is what I really need to di if I am going to attempt to regain the brain situation. And to deal with my over all health. So I start IV treatment Thursday and then the first week in April I travel to NY where I have to go to the Presbyterian hospital the first week in April for brain studies. The Lyme doctor said he was going to need to work on one thing at a time and that I am probably so ill because I have active multi infections that need to be brought under control but he said I needed to understand I was looking at at least 6 months of different treatment to get me in a better place. and that they wouldn't be all IV antibiotics because my chemistry is so off he will need to work on different things. one at a time. but my immune system is so complimented and my vitamins are so off that he will be doing a lot through the IV so he couldn't of been happier that a port was going in so he had the access he needed . I am still just as ill but at-least I have a great group of MD working together and a plan to do everything they can to try to help me and at this point I can't ask for more. His goal is to get me to a better place with a little quality of life. I am so grateful. I couldn't of thanked him enough. And I want to thank all you so kind folks. It was just beautiful the help I received by so many and I didn't feel alone anymore after I reached out to you all and I am so grateful thank you so much you are all so beautiful and wonderful people and so kind folks here on helping me in my darkest time yesterday. You are truly a beautiful bunch of folks. Thank you again from my heart. Everybody was so nice to me thank you. I will be posting more as I get hopefully to a better place mentally and posting more on my diagnosis and putting out what I am being treated for and testing positive for as I would really appreciate every bodies input and help with this. I have gone the last 15 year doing it alone and I throw in the towel. I am facing the fact that I can't do it anymore without some support. I would greatly appreciate anybodies in put as time goes on you will all get to know me better as I am not shy at expressing myself and hopefully being able to be help to somebody else that might be in that awful place I was in yesterday. Maybe even if I am well enough I would also like to start a new Lyme support group someday here as there is not one and there are hundreds of people but no support group to access. I don't drive and the nearest group is over 60 miles away and not accessible by public transportation so if you are like me that do not drive you are out of luck and that is not good. Basically we have no support. If a person can't get to it. then it doesn't do so many of us that need one any good. Thank you again to all. You are all the best. Larry [/QB][/QUOTE]
Posts: 39 | From Massachusetts | Registered: Mar 2017
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Breaking up post above so all can read it:
Hi Everybody,I want to let everybody know how I made out today. And how I am doing after the scary weekend and with being so ill Sunday night and everybody's help and calls.
There are no words to let everybody know how wonderful you all are in my heart for being there for me at my darkest time. And to give everybody and update on how I made out today with getting the help I need
I met with my primary doctor to start and to get him on board with what was about to happen.and then I called my Lyme doctor and he called me back and talked to me for 20 minutes to set up treatment and he checked with me if I was able to get a port and yes it is scheduled for Thursday morning at 7:30. and everybody is working together which is awesome
they are no all happy about the port but it is not there call it is my call and I have been told by my Lyme doctor it is what I really need to di if I am going to attempt to regain the brain situation. And to deal with my over all health.
So I start IV treatment Thursday and then the first week in April I travel to NY where I have to go to the Presbyterian hospital the first week in April for brain studies.
The Lyme doctor said he was going to need to work on one thing at a time and that I am probably so ill because I have active multi infections that need to be brought under control but he said I needed to understand I was looking at at least 6 months of different treatment to get me in a better place. and that they wouldn't be all IV antibiotics because my chemistry is so off he will need to work on different things. one at a time.
but my immune system is so complimented and my vitamins are so off that he will be doing a lot through the IV so he couldn't of been happier that a port was going in so he had the access he needed .
I am still just as ill but at-least I have a great group of MD working together and a plan to do everything they can to try to help me and at this point I can't ask for more.
His goal is to get me to a better place with a little quality of life. I am so grateful. I couldn't of thanked him enough. And I want to thank all you so kind folks.
It was just beautiful the help I received by so many and I didn't feel alone anymore after I reached out to you all and I am so grateful thank you so much you are all so beautiful and wonderful people and so kind folks here on helping me in my darkest time yesterday.
You are truly a beautiful bunch of folks. Thank you again from my heart. Everybody was so nice to me thank you.
I will be posting more as I get hopefully to a better place mentally and posting more on my diagnosis and putting out what I am being treated for and testing positive for as I would really appreciate every bodies input and help with this.
I have gone the last 15 year doing it alone and I throw in the towel. I am facing the fact that I can't do it anymore without some support.
I would greatly appreciate anybodies in put as time goes on you will all get to know me better as I am not shy at expressing myself and hopefully being able to be help to somebody else that might be in that awful place I was in yesterday.
Maybe even if I am well enough I would also like to start a new Lyme support group someday here as there is not one and there are hundreds of people but no support group to access.
I don't drive and the nearest group is over 60 miles away and not accessible by public transportation so if you are like me that do not drive you are out of luck and that is not good.
Basically we have no support. If a person can't get to it. then it doesn't do so many of us that need one any good. Thank you again to all. You are all the best. Larry
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Larry, it is wonderful to hear from you and to hear how everything is working out for this week!
I prayed and prayed, and it looks like my prayers for you and your situation have been answered.
Keep us informed as to how it goes each step of the way.
This is how we help each other to get through this horrendous disease. Each person tells what they know to help every other person.
So, we are an on-line support group.
I am so, so happy you wrote! Keep on writing.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
posted
Good to hear from you, Larry, and that you're taking action!
One idea for bringing people together - in time, start a facebook page for people in your area - up to you how broad an area to make it for. Then you can all chat.
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Larry!
Good to hear from you! And you've made very good progress. NICE!
Along with prayers, I was hoping you would also feel better because the full moon had finally passed. That surely made your road to hoe even harder.
As legend has it...
The March full moon is known as the Worm Moon. It is the last full moon of winter.
As the temperature begins to warm and the ground begins to thaw, earthworm casts appear, bringing back the robins.
So now we all have something special to look forward to... IV antibiotics for Larry and for all of us the robins will be heading home!
Please do keep in touch. We will do what we can to help and we want you to know you are not alone.
Wishing you luck and better health!
And thanks again to all who reached out to assist Larry!
dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
Such good news, Larry! Thanks for writing to let us know how you are doing. We were worried! Best of luck with the port and all of your treatments ahead. It sounds like you are in good hands now. God bless.
Posts: 2386 | From New England | Registered: Aug 2011
| IP: Logged |
posted
It was great to read your update (and a relief!) to hear things are moving forward because of many people praying for you and having prayers answered.
Never forget you are NOT alone in this and if you are not getting better, consider finding a new LLMD.
Try to connect with other Lyme patients on the MA Online Support Group link I sent you.
Please continue to keep us posted.
God bless you always.
Posts: 8981 | From Illinois | Registered: May 2006
| IP: Logged |
posted
You sound in much better spirits! Hurray for some Dr.'s working together.
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
| IP: Logged |
posted
It's so good to hear that things are improving, Larry.
I'll be praying for you .. esp on Thursday.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hi <<<<< Larry/mamman >>>>>,
We were glad to be able to visit on phone for a bit, this is Trekcoords Wife.
Prayers going up for you and for the Thursday a.m appointment as well.
Jus' Silverwolf here,and TrekC' to,he's getting groceries at the moment.
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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ukcarry
Frequent Contributor (1K+ posts)
Member # 18147
posted
I am very pleased to hear that there is a plan of action now for you and I wish you every success with your treatment.
Posts: 1647 | From UK | Registered: Nov 2008
| IP: Logged |
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