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

Interested in more discussions like this? Go to the Infectious Diseases group.

@sundance6 It sounds like you have had a productive period in a time of confusion, isolation, and social withdrawal. Good for you! Like other autoimmune disorders, Lyme Disease can present differently for different people.

I am sure you will have people question about your own case, so thank you in advance for being open to sharing! How are you feeling today?
Ginger

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@gingerw

@sundance6 It sounds like you have had a productive period in a time of confusion, isolation, and social withdrawal. Good for you! Like other autoimmune disorders, Lyme Disease can present differently for different people.

I am sure you will have people question about your own case, so thank you in advance for being open to sharing! How are you feeling today?
Ginger

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Yes, Ginger in regaurd to a Productive, learning time about Lyme I have made it through it so far! So much new Info and websites have come into being since two and a half years ago!
Every lesson is "GIVEN TO US TO LEARN AND GROW" no matter how diffulct they may seem to be!
Thanks,
Sundance
Please Everyone Stay Safe and Healthy during this time!
Sundance

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Hello to the entire community!

This is my first post. I was diagnosed 11 months after a unknown tick-bite that I had Lyme Disease. After 8 weeks of Doxy, and currently on Plaquenil/Biaxin, I have seen little improvement. Symptoms that have been persistent are: Muscle Twitching (more as of late), quick twitching random throughout body that lasts 10 seconds or less, Eye Floaters and Light Sensitivity whenever outside, Ringing in Ear, Upper Mid Back Pain, Anxiety (never had prior), and hand pain (pain when holding something for any amount of time/grip pain).

The Western Blot was positive for 5 bands (4 Lyme Inclusive) and the other 2 lyme bands were equivocal, this was enough for the doctors to clinically diagnose.

At this point, I'm not sure next steps, to re-visit a neurologist, or give it time. I'm a 28 y/o, Male, in otherwise good health. Just not sure if I should seek out any alternative diagnoses as the twitching and hand fatigue is recent.

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@anthonymichael15

Hello to the entire community!

This is my first post. I was diagnosed 11 months after a unknown tick-bite that I had Lyme Disease. After 8 weeks of Doxy, and currently on Plaquenil/Biaxin, I have seen little improvement. Symptoms that have been persistent are: Muscle Twitching (more as of late), quick twitching random throughout body that lasts 10 seconds or less, Eye Floaters and Light Sensitivity whenever outside, Ringing in Ear, Upper Mid Back Pain, Anxiety (never had prior), and hand pain (pain when holding something for any amount of time/grip pain).

The Western Blot was positive for 5 bands (4 Lyme Inclusive) and the other 2 lyme bands were equivocal, this was enough for the doctors to clinically diagnose.

At this point, I'm not sure next steps, to re-visit a neurologist, or give it time. I'm a 28 y/o, Male, in otherwise good health. Just not sure if I should seek out any alternative diagnoses as the twitching and hand fatigue is recent.

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Hello @anthonymichael15 and welcome to Mayo Clinic Connect. I can see how you are struggling to know what to do next after all you have been through.

That said, I am tagging @sundance6 who has shared information previously on Lyme to see if they may be able to help provide some additional information based on their experience.

I am wondering if these are symptoms your neurologist prepared you for as possible side effects and/or long-term symptoms? If not, it may be best to update your neurologist to let them know of your new symptoms and let he/she decide if you need to be seen.

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@anthonymichael15

Hello to the entire community!

This is my first post. I was diagnosed 11 months after a unknown tick-bite that I had Lyme Disease. After 8 weeks of Doxy, and currently on Plaquenil/Biaxin, I have seen little improvement. Symptoms that have been persistent are: Muscle Twitching (more as of late), quick twitching random throughout body that lasts 10 seconds or less, Eye Floaters and Light Sensitivity whenever outside, Ringing in Ear, Upper Mid Back Pain, Anxiety (never had prior), and hand pain (pain when holding something for any amount of time/grip pain).

The Western Blot was positive for 5 bands (4 Lyme Inclusive) and the other 2 lyme bands were equivocal, this was enough for the doctors to clinically diagnose.

At this point, I'm not sure next steps, to re-visit a neurologist, or give it time. I'm a 28 y/o, Male, in otherwise good health. Just not sure if I should seek out any alternative diagnoses as the twitching and hand fatigue is recent.

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AnthonyMicheal, I feel very much for you! I did not come down with Lyme until I was 72. Having lived a very active and athletic for 72 years, it has been very difficult!
I live out in New Mexico, so we are not supposed to have Lyme!
Over the past three years I have attended many Lyme seminars online,, read thousands of pages in books and read more articles than has overloaded my brain!
Things I have learned, 1. You can get Lyme at any time in your life, and it may not appear for many years! 2. You do not have to live in the east all your life, you can do a visit and you don't realize you have been bitten. As a matter of affect, they are showing golfers have a better chance of being bitten by a tick than the average person. Two PGA Tour Pros, Jimmy Walker and Tim Herron. I am also in the golf industry and have played all over the country and the world. Problem is they spray the fairways but not the rough where many golfers end up. 3. When I first started coming down with my symptoms, it took them over 6 months to even say it may be Lyme. It was only symptom diagnosed by a very smart doctor who actually recognized it because he had studied it early on. 4. At that time there were maybe 12 symptoms? Now you read research and there are over 60! I have a friend who was from Lyme Con. and her daughter has it.
She went to a Lyme group session with her and she said of the 30 people in attendance all had different symptoms.
What you have said are some similar to some of mine. My worst were the constant headaches, fatigue, denseness, joint soreness and muscle fatigue!
My PCP would only do the Doxy for two weeks, which helped then came back. Frustrating is that it can cause the bacteria to die and then cause joint pain, I believe it's called a Herchimier Reaction, not sure of the spelling but you can look it up.
I finally about six months ago had a Heart the Heart conversation with him. What we worked out was to Journal my every day every hour so I could ID my symptoms better! I know how many hours I can push myself and when to Jump off the Merry-go-round!
I hope this helps a little!
Some people to read, Dr. Richard Horwitz, Dr. Bill Rawls are to very good sources.
There are many more current books on Lyme than there were three years ago.
You will have stages. My biggest frustration was people not understanding the Disease, in my case my family.
Know that your are not alone! For one Mayo Connect got me through some very hard times when I was ready to Check Out!
The members are so Wonderful and Blessed!
My Blessing and faith to you.
Sundance(RB)

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@anthonymichael15

Hello to the entire community!

This is my first post. I was diagnosed 11 months after a unknown tick-bite that I had Lyme Disease. After 8 weeks of Doxy, and currently on Plaquenil/Biaxin, I have seen little improvement. Symptoms that have been persistent are: Muscle Twitching (more as of late), quick twitching random throughout body that lasts 10 seconds or less, Eye Floaters and Light Sensitivity whenever outside, Ringing in Ear, Upper Mid Back Pain, Anxiety (never had prior), and hand pain (pain when holding something for any amount of time/grip pain).

The Western Blot was positive for 5 bands (4 Lyme Inclusive) and the other 2 lyme bands were equivocal, this was enough for the doctors to clinically diagnose.

At this point, I'm not sure next steps, to re-visit a neurologist, or give it time. I'm a 28 y/o, Male, in otherwise good health. Just not sure if I should seek out any alternative diagnoses as the twitching and hand fatigue is recent.

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Hang in there I have the same thing going on it will reside Just run out the meds and wait we will get better . Barb Baker Northern MN

REPLY
@anthonymichael15

Hello to the entire community!

This is my first post. I was diagnosed 11 months after a unknown tick-bite that I had Lyme Disease. After 8 weeks of Doxy, and currently on Plaquenil/Biaxin, I have seen little improvement. Symptoms that have been persistent are: Muscle Twitching (more as of late), quick twitching random throughout body that lasts 10 seconds or less, Eye Floaters and Light Sensitivity whenever outside, Ringing in Ear, Upper Mid Back Pain, Anxiety (never had prior), and hand pain (pain when holding something for any amount of time/grip pain).

The Western Blot was positive for 5 bands (4 Lyme Inclusive) and the other 2 lyme bands were equivocal, this was enough for the doctors to clinically diagnose.

At this point, I'm not sure next steps, to re-visit a neurologist, or give it time. I'm a 28 y/o, Male, in otherwise good health. Just not sure if I should seek out any alternative diagnoses as the twitching and hand fatigue is recent.

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Thank you all for your replies, I am hopeful this lengthy course of antibiotics will lead to some improvement and that the double vision at night will improve. It really does boggle my mind how it is not a more heavily funded disease, especially considering the long-term and debilitating affects many of us have to live with due to being 'dismissed'. I remain positive and hope to tackle those symptoms in time.

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I want to talk about the Hell I have endured since 1992. I found a tick in the back of my elbow. I listened to the tv broadcast. Cure Lyme with a little antibiotic. NO. The dr. said I had a virus. My husband had to support me all the way up and down the stairs to get to that appointment. Since then I have had so many issues including apnea. I am not overweight, so why? But I can live with that. The absolute worst thing is the complete relapses I have 2X annually. Leading up to it I know what is coming because I have migrating pains, dizziness, slight headache, painful legs and feet, but I continue to forge on until I get a headache that is so bad it cannot be remediated. Sometimes I cannot move from my bed because I am too dizzy. I cannot drink or eat. I sleep 24X7 with an ice pack and cannot be left alone. When I get help to get to the bathroom I retch, but of course there is no food or water in my stomach. I just got out of bed to join the living this morning after 11 days in bed. I feel so blessed because at 74 years old I fear that each time could be the last. There is no hope. The NIH has done some work with an antibiotic that works. Hygromycin A, but it is not available yet. It may be years. Lyme specialists are expensive and cannot guarantee any positive results. Insurance provides no coverage for their fees. I have never tested positive, but I have been sick since that engorged tick infected me. I have taken antibiotics and haven't gone that route for at least 15-20 years. I am seeing a dr. today and asking for meds. I don't know how sympathetic he will be. I will print out a page to show an antibiotic that might be helpful and if given to me I will take it. I am in limbo far too often because I cannot count on being mobile any particular day. Making plans to travel away from home is a challenge. I try to make believe I will be OK. If I did not do that I would be confined to the area around my home feeling more or less like a prisoner of this disease. It is stealing the time I have left and shortening my stay here on this planet.

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@krisjb1

I want to talk about the Hell I have endured since 1992. I found a tick in the back of my elbow. I listened to the tv broadcast. Cure Lyme with a little antibiotic. NO. The dr. said I had a virus. My husband had to support me all the way up and down the stairs to get to that appointment. Since then I have had so many issues including apnea. I am not overweight, so why? But I can live with that. The absolute worst thing is the complete relapses I have 2X annually. Leading up to it I know what is coming because I have migrating pains, dizziness, slight headache, painful legs and feet, but I continue to forge on until I get a headache that is so bad it cannot be remediated. Sometimes I cannot move from my bed because I am too dizzy. I cannot drink or eat. I sleep 24X7 with an ice pack and cannot be left alone. When I get help to get to the bathroom I retch, but of course there is no food or water in my stomach. I just got out of bed to join the living this morning after 11 days in bed. I feel so blessed because at 74 years old I fear that each time could be the last. There is no hope. The NIH has done some work with an antibiotic that works. Hygromycin A, but it is not available yet. It may be years. Lyme specialists are expensive and cannot guarantee any positive results. Insurance provides no coverage for their fees. I have never tested positive, but I have been sick since that engorged tick infected me. I have taken antibiotics and haven't gone that route for at least 15-20 years. I am seeing a dr. today and asking for meds. I don't know how sympathetic he will be. I will print out a page to show an antibiotic that might be helpful and if given to me I will take it. I am in limbo far too often because I cannot count on being mobile any particular day. Making plans to travel away from home is a challenge. I try to make believe I will be OK. If I did not do that I would be confined to the area around my home feeling more or less like a prisoner of this disease. It is stealing the time I have left and shortening my stay here on this planet.

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@krisjb1, I can't imagine how difficult it has been for you to deal with Lyme disease for so long. I also didn't know how many people are affected by Lyme disease until I saw this Mayo Clinic article from this past June.

— Mayo Clinic expert speaks of significance of Lyme disease uptick:
https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-expert-speaks-of-significance-of-lyme-disease-uptick/
There is a good website for learning more about the condition in case you haven't seen it already.
— Welcome to the Lyme Disease Association Website:
https://lymediseaseassociation.org/
Hopefully you will get some help and relief when you see your doctor today.

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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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