Diagnosed with Chronic Lyme Disease: Anyone else?

Posted by Sundance(RB) @sundance6, Dec 11, 2020

Two and half years ago I came down with Lyme Disease! Living in a State, New Mexico ,that does not reognize it my chances of getting properly diagnoised and treated were Slim to None! I found Mayo Connect, MY LIFE SAVIOR!
My Lyme has turned int Late Stage Chronic Lyme Disease! This last year it has been particularly Hard. The week that Covid hit I was on a business trip that was long and involved! Needless to say, those of you who have Lyme know, doing such a trip is a sure fire way to what I call my "Lyme Episodes"!
I was down for over two months! But I decided to spend this time to do research on Lyme!
I've read several books by Dr. Richard Horowitz, Dr. Rawls, and Susan Strasheim plus continuing resereach on line. They were all very helpfull in understanding this Horrible Disease!
Unfortunately there are no easy answers for a cure or help without going to great deal of travel and medical Expense, non of which offered a better that 50/50 change they could help you for the rest of your life!
Seeing that Covid and Lyme have similar symptons I have been tested several time to make sure I don't have the virus. Everytime it comes back Negative! Which is Good and Bad! Good because I don't have the virus, bad because it just means Lyme is taking its tolll on me! This last 9 months have been the worst I've experenced with Lyme!
FIRST, for some reason Mayo Connect dropped out of my computer system! It just came back up yesterday! Glad to be back on board!
SECOND, I'D LIKE TO SEND OUT A THANK YOU FOR ALL OF THE MENTORS, AND OTHER SUBSCRIBERS WHO HAVE HELPED ME MENTALLY THROUGH THIS LAST TWO AND A HALF YEARS.
I welcome any help or suggestions you may have to help me through this! I'm also here to answer any questions new people may have about Lyme Disease! Not that I have all or any of the answers, I can let you know how I have made it through it.
In the past year there have been more websites who have come on board to help Lyme patients. I would be glad to send you a list of them that you may not know about! Or let me know the ones I don't know about!
THANKS FOR YOUR TIME
SUNDANCE

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@krisjb1

The doctor prescribed doxycycline and did not disparage my account of my illnesses. Oh happy day. I will take it until my dizziness subsides. Hopefully side effects will be limited. I have not taken an antibiotic for so many years I am almost afraid to take it but I have to try this.

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Hi @krisjb1 it’s wonderful you have a doctor who finally listened to you about your Lyme disease. What a relief to be taken seriously! Doxycycline is the go-to treatment for long-haul Lyme disease.
I live in the north woods of Wisconsin where it’s prevalent. We have a new research center up here called the Aspiris Tick Borne Disease Center. There’s some good information on their site. http://www.tickcenter.org/

I’m familiar with several acquaintances who had Lyme’s disease and finally found relief with the Doxycycline therapy. They were on the medication for a few months but it paid off,.
So, stay the course. Hopefully you don’t have any side effects but with any antibiotic there is always the chance for some disruption in the lower digestive tract. So make sure you supplement your diet daily with a cup of live culture yogurt. Don’t eat it at the same time as your Doxycycline though. Space it several hours after a dose and before the next.

Don’t be afraid to take the antibiotic. For a different medical condition I was on 2 antibiotics at the same time for over 2.5 years. We do what’s required to stay healthy and in your case, ridding your body of that Lyme Disease…both take precedence over our fear of being on long term meds! Wishing you all the best! Keep us posted, ok?

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@loribmt

Hi @krisjb1 it’s wonderful you have a doctor who finally listened to you about your Lyme disease. What a relief to be taken seriously! Doxycycline is the go-to treatment for long-haul Lyme disease.
I live in the north woods of Wisconsin where it’s prevalent. We have a new research center up here called the Aspiris Tick Borne Disease Center. There’s some good information on their site. http://www.tickcenter.org/

I’m familiar with several acquaintances who had Lyme’s disease and finally found relief with the Doxycycline therapy. They were on the medication for a few months but it paid off,.
So, stay the course. Hopefully you don’t have any side effects but with any antibiotic there is always the chance for some disruption in the lower digestive tract. So make sure you supplement your diet daily with a cup of live culture yogurt. Don’t eat it at the same time as your Doxycycline though. Space it several hours after a dose and before the next.

Don’t be afraid to take the antibiotic. For a different medical condition I was on 2 antibiotics at the same time for over 2.5 years. We do what’s required to stay healthy and in your case, ridding your body of that Lyme Disease…both take precedence over our fear of being on long term meds! Wishing you all the best! Keep us posted, ok?

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Thank you for the information which I will look at when I feel up to it. I took two doses of med yesterday and am paying for it today with dizziness that has put me back in bed. However, I have an appointment that I have to meet today so my husband will drive me there and help me navigate. This is one of those things that makes Lyme life altering. I just cannot expect that on any particular day I am going to be OK. If I cancel a dr. appt on the day I am expected to be there they may charge for that missed appointment. If I make a plan for an overnight at a hotel and don't cancel in time then I will pay for a stay I can't make. This is all very discouraging, but there doesn't seem to be a solution. Now, the doxycycline has shown what it can create in a side effect, dizzyness, I don't want to continue taking it. I would prefer a different side effect please!

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@krisjb1

Thank you for the information which I will look at when I feel up to it. I took two doses of med yesterday and am paying for it today with dizziness that has put me back in bed. However, I have an appointment that I have to meet today so my husband will drive me there and help me navigate. This is one of those things that makes Lyme life altering. I just cannot expect that on any particular day I am going to be OK. If I cancel a dr. appt on the day I am expected to be there they may charge for that missed appointment. If I make a plan for an overnight at a hotel and don't cancel in time then I will pay for a stay I can't make. This is all very discouraging, but there doesn't seem to be a solution. Now, the doxycycline has shown what it can create in a side effect, dizzyness, I don't want to continue taking it. I would prefer a different side effect please!

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I can truly empathize with your unexpected dizziness from the new med, along with your unpredictable days. I’ve been through similar and it’s pretty deflating to not be able to face each day with certainty.
The side effect from the Doxy might only be temporary for you as your body gets used to it. You already have those unpredictable days with Lyme’s disease. So I’d encourage you to give it a few more days unless it’s really unbearable.

Sometimes it feels like the cure is worse than the ailment but in the case of Lyme’s disease, if this Doxycycline works for you, then you might be free of that disease. It would be worth a try, right?

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I went for my annual thermogram today with the help of my husband. I wasn't able to navigate on my own. The woman doing the thermogram helped me too so I was able to complete what was needed. She told me she became interested in lymphatic drainage when she was diagnosed with Bartonella. As you may know that is one of the infections often present with Lyme. She told me she took the training after she recovered through the use of Lymphatic drainage. So, that is my next step. Hopefully it will not be too difficult to accept the effects of detox. She told me that some people cannot endure the die off and quit. If the die off is pain in my legs and feet, no problem. I have been able to work and do what has to be done with that. However, if it causes unbearable headaches or massive dizziness, I cannot. So, I may try again with the Doxy, but if I am again disabled completely by it I won't pursue it. Because the only pain reliever that has ever been useful for the head pain is nearly impossible to get as it is a class 2 narcotic I won't invite the pain by using Doxy. I have taken antibiotics before and the positive effects are short lived. The bacteria lodged in the brain cannot be reached by antibiotics as far as I know.

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@krisjb1

I went for my annual thermogram today with the help of my husband. I wasn't able to navigate on my own. The woman doing the thermogram helped me too so I was able to complete what was needed. She told me she became interested in lymphatic drainage when she was diagnosed with Bartonella. As you may know that is one of the infections often present with Lyme. She told me she took the training after she recovered through the use of Lymphatic drainage. So, that is my next step. Hopefully it will not be too difficult to accept the effects of detox. She told me that some people cannot endure the die off and quit. If the die off is pain in my legs and feet, no problem. I have been able to work and do what has to be done with that. However, if it causes unbearable headaches or massive dizziness, I cannot. So, I may try again with the Doxy, but if I am again disabled completely by it I won't pursue it. Because the only pain reliever that has ever been useful for the head pain is nearly impossible to get as it is a class 2 narcotic I won't invite the pain by using Doxy. I have taken antibiotics before and the positive effects are short lived. The bacteria lodged in the brain cannot be reached by antibiotics as far as I know.

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Good morning, @krisjb1, I’m relieved you were able to get your appointment completed yesterday…and pretty amazing that your technician is experienced in lymphatic drainage after having your same diagnosis! She knows what you’re going through! I really hope it helps you as much as it did for her with her Lyme’s disease.

I can’t even imagine what you’re going through with this disease. You are the only person who can decided what you can deal with and tolerate at any given time. If treatment brings on unbearable headaches and massive dizziness it’s certainly understandable that you may not choose to continue the medications.
You mentioned that antibiotics don’t cross the blood/brain barrier. Some do have that capability and Doxycycline is one of them. Not pushing for you to continue. I just thought you might be interested why Doxy is used for Lyme’s.

Found an article on the Clinical Infectious Disease site regarding the efficacy of Doxycycline crossing the blood brain barrier in treatment of Lyme’s disease that you might find interesting. https://academic.oup.com/cid/article/30/1/237/322583?login=false

I really hope you find some relief with the lymphatic drainage and that there’s no awful detox symptoms for you. Being in capable hands of someone who has walked your walk will be comforting. She’ll be empathic and understanding of your situation.
When will you start treatment? This could be really valuable for anyone suffering from Lyme disease. Will you please let us know how you’re doing?

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The tech told me that lymphatic drainage will be contingent upon my dr. saying I am good to go as kidney disease might be one of those issues that may not allow detox. My kidneys were at 3 and have recovered a bit back to 2 which is a good thing, I think that being too ill to drink liquids and then not being able to keep them down has been at least partially to blame. So, based upon recent tests the dr. should be OK with getting started with lymphatic drainage work. Just have to broach that with him next week and then if OK is given get started. Of note is that I am also recovering from Covid so I need to feel stable before entering into something that could cause a herx.

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I became very ill in the fall of 1985. Our family had been on vacation in Vermont and Canada hiking and outdoors during the late summer. Also, I lived in Connecticut all my life. I had so many symptoms including fever, knee pain, extreme fatigue, bells palsy, sleep disturbances, heart palpitations, stomach issues, etc. Went to over 20 doctors and never received any diagnosis until 9 yrs later. In the meantime I had to stop working and became very depressed because there were no answers as to my symptoms. Was put on antibiotics through a pic line for 6 weeks. I never got any relief from any if my symptoms. I was 39 yrs old in 1985. My life has never been the same. I have arthritis, sleep disturbances, never feel rested in the morning, fatigue, headaches, heart problems, joint pain, and so on. I was put on antidepressants, anti anxiety meds and pain meds. I would like to have some quality of life. Never really feel good. I hope and pray for some answers. God bless you all.

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