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Sat Jul 8, 2017, 10:11 AM

GERD, fibromyalgia, anxiety -- Lyme Disease

Hi everyone. I've posted here before about some of my chronic health problems. For three years I've had a handful of symptoms and seen many specialists. I've been diagnosed with GERD, gastritis, tennis elbow, fibromyalgia, anxiety, leaky gut and probably a few other things I'm forgetting.

My symptoms are:
(All of these symptoms wax and wane in severity)

Arthritis type pain all over body
Muscle aches for no apparent reason
Gastrointestinal issues from top to bottom (GERD, gastritis, irritable bowel)
Blurry, fluctuating vision
Intermittent chest pain
Tingling and numbness in limbs
Chronic migraine (1-3x a week)
Muscle weakness
Fatigue
Mild tremor
Heart palpitations
Shortness of breath
Tinnitus
Anxiety (who wouldn't be anxious with all those symptoms?)


Guess what....it's Lyme Disease.

If I had not tested negative for Lyme Disease three years ago, if I had not been told there is no Lyme Disease in Arkansas where I was bit by a tick five years ago, if I had not been told I had to have a bullseye rash to get Lyme Disease (I did not have the rash) I would have read more about it and recognized myself immediately by the symptoms.
All of the above are symptoms of (late stage) Lyme Disease.

I discovered the tests are very unreliable and miss many people with Lyme Disease. Thankfully I finally ran into a smart doctor who thought I should be tested again. Lo and behold, I tested positive. Follow up tests have confirmed it.

When he told me the tests are often wrong, I went back and read about Lyme Disease and almost fell out of my chair when I read the list of symptoms. There I was!! Every single mysterious symptom of the last 3-5 years!

Not everyone with Lyme Disease has ALL those symptoms (I just got lucky ). And there are more symptoms than I'm mentioning here.

Chances are you don't have Lyme Disease. But I just wanted to warn people not to write it off like I did as a possible cause of these kinds of chronic symptoms, even if they've tested negative. The tests can be wrong. You don't have to have the classic bullseye rash. Lyme Disease is in most areas of the country. Many people with Lyme don't even remember being bitten (although I do.) The ticks can be so tiny you may not notice them.

A good place to read about Lyme Disease is here. http://www.ilads.org
Be aware there is a lot of controversy around the treatment for Lyme disease. Read as much as you can about it if you suspect you might have it.

I've started treatment but I hear it may be a long road to full recovery. I've had it for so long now it's disseminated throughout my body and is affecting my central nervous system. But I finally know what's wrong with me after all this time and am ready to fight it and get better!

Hugs to all of you out there with chronic health conditions.


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Reply GERD, fibromyalgia, anxiety -- Lyme Disease (Original post)
OnionPatch Jul 2017 OP
mrs_p Jul 2017 #1
OnionPatch Jul 2017 #4
miss-nasty Jul 2017 #2
OnionPatch Jul 2017 #3
miss-nasty Jul 2017 #5
OnionPatch Jul 2017 #6
OnionPatch Jul 2017 #7
miss-nasty Jul 2017 #8

Response to OnionPatch (Original post)

Sat Jul 8, 2017, 10:31 AM

1. Best wishes on your recovery

Lyme disease can be very tricky to diagnose (as you so well illustrate). The bullseye rash certainly doesn't happen in all cases and, if present, can go unnoticed.

Smart of you to keep advocating for yourself.

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Response to mrs_p (Reply #1)

Sat Jul 8, 2017, 12:58 PM

4. Thanks!

At this point, I don't want to advocate for myself so much as to help spread the word to others that this can happen to them. It took me three years to figure out what was wrong with me. Now I can start the second half of the battle...healing. But if there had been more information and especially more accurate information out there about the testing, symptoms, etc., I would not have had to wait three years to begin treatment.

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Response to OnionPatch (Original post)

Sat Jul 8, 2017, 11:08 AM

2. I have a nearly identical story

I was bit on the calf of my leg in 2005 and presented to my physician with the classic bullseye rash. He said it was the most perfect example of the bullseye he'd ever seen. He placed me on Vibromycin twice daily for 10 days and said I would be fine. He was my doctor dor 48 yes, I believed him. 12 years later I am bedfast many days, crippled with all of the symptoms you described. I have such a severe brain fog that I feel drugged every day of my life. I have been to 5 doctors for an opinion and they all try to tell me that it's not Lyme and how they determine it's Lyme is because it happened in Indiana and Indiana doesn't have Lyme disease. That's friggin hogwash!!! I have been diagnosed with depression, anxiety, bipolar disorder, PTSD, Osteoarthritis, fibromyalgia, Gerd, personality disorder, morbid obesity, hypertension, IBS since suffering from the tick bite and now have a disability hearing soon. I'm getting really sick of this life and have periods of suicidal ideation from having to suffer with the doctors just shrugging their shoulders. I would so much rather work. They don't care and don't want to touch the fact that it is likely Lyme because of the controversy - some doctors have lost their medical license from administering the aggressive treatment. I am a nurse of 34 years - and found it is like beating my head against the wall to find a doctor to even thoroughly assess me. They would rather say I'm nuts!!! Yes, I had to give up an healthcare administration position, went broke and now on Obamacare to even receive medical care on the account of this malpractice by several doctors.

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Response to miss-nasty (Reply #2)

Sat Jul 8, 2017, 12:36 PM

3. I'm so sorry!



I've heard lots of stories like yours, unfortunately. It seems like a hard infection to get rid of. Much harder than most doctors want to admit, especially if it isn't caught right away or treated well enough initially. Since I've just been diagnosed my insurance will most likely cover several weeks to a month of antibiotics but I hear after that, if you still have symptoms, most insurance companies will label it as something else and then it's no more help from them! From all I've read it usually takes longer than that to kill a long-standing, disseminated Borrelia infection. I'm looking into herbal protocols for when my insurance decides to stop paying for my treatment. I've heard some people have had success with the Buhner herbal protocol so that's what I'm planning to try. Have you tried any herbals?

The people I know who have been helped for their Lyme Disease have treated themselves intensively with herbals or were able to go to a "Lyme-literate" doctor, or LLMD. Have you tried one of those? They seem to be hard to find. I'm lucky to be near a major metropolitan area where there are several. I found one who accepts my PPO insurance as an out-of-network provider, so I get some coverage for office visits, testing and medicine but I've had a lot of out-of-pocket expenses for some of the testing and I know they'll stop covering the antibiotics at some point, most likely before I'm well.

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Response to OnionPatch (Reply #3)

Sat Jul 8, 2017, 02:19 PM

5. Thank you

I haven't went to an LLMD yet, but I have found one about an hour from me. I'm just waiting to finish up with my battle with disability next week and then I will make an appointment and see what he thinks. It's been 12 years since my bite so I'm sure it's going to be a long hard battle for me but so is life now. I have copies of my medical documentation of my tick bite - the description of the wound and treatment in 2005 up through today and reading it is like a text book story of Lyme. It's all in hand ready to go to the LLMD. Thanks for posting this thread - there needs to be much more awareness of Lyme.

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Response to miss-nasty (Reply #5)

Sat Jul 8, 2017, 05:44 PM

6. Good, miss-nasty, I hope you can get there.

And I hope your treatment will be covered or at least affordable. And successful. I've heard of people who have had it for a very long time but eventually got their health back. But yes, it's going to be a long road probably, for both of us.

We're not alone. In the last month I've found out that a cousin, an old friend and a neice of mine also have Lyme Disease! I think it's becoming more and more common.

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Response to miss-nasty (Reply #5)

Sat Jul 8, 2017, 06:22 PM

7. Oh and good luck with your battle

to get disability! You certainly sound qualified to me! I hope it works out. I know it's really hard to function with all these issues. I don't think I have it as bad as you, and I don't have too much of the brain fog symptoms but I'm having a hard time keeping up at work. And I work a desk job at a great company with flexible hours and can work from home sometimes too. If I didn't, I don't think I could hold a job right now.

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Response to OnionPatch (Reply #7)

Sun Jul 9, 2017, 08:04 AM

8. Thank you

Thanks for your kind words of encouragement. Wishing you and yours well.

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