Lyme Disease Misdiagnosed as Fibromyalgia

[Kayann246]

I don't know where to start because it has been a long journey. 9 years ago, yes 9 years, the day after mowing the grass in NC, I noticed a rash on my inner arm. I didn't think anything of it. It was there for a few days and went away. That is when the terrible symptoms started. Headaches, dizzy, weakness, chronic pain, bedridden for weeks etc. I went from doctor to doctor to try figure out what was wrong. I went to university doctors and major clinics, still no answers.

After months of driving and trying to figure out what was wrong with me while my then husband was deployed and having a new baby, a neurologist diagnosed me with Lyme disease because my test was positive. I have never heard of Lyme disease but I was content to have a diagnose. But since he was a private doctor that I could no longer afford, I switched over to approved doctors through Tricare and the VA. They look over my medical records from the many doctors I was visiting. They decided to test me for Lyme again. I was tested over and over again. Those tests were all negative. Even blood tests I received at Duke and UNC and U of M. It was confusing because my health continued to decline. I could no longer maintain relationships, went through a divorce, moved back home, a single parent trying to get help from the list of doctors that denied I even had Lyme. Instead, I was diagnosed with fibromyalgia, chronic migraines, arthritis, nerve damage, anxiety, depression, personality disorder etc. I'm being seen by pain manangement, physical therapy, nuerology, hemology, primary care and many other doctors because of all the symptoms and declining health. It has been a nightmare.

To try to make this short, I pray and grew close to God at this time, sometimes my faith was shaken but I feel like my prayers are being answered and God has made a way. I found a great Lyme doctor here in Michigan, I found a great Lyme protocol that I started a month ago that is making me feel better slowly and I'm finding the light at the end of the tunnel with God and his grace.

The reason I posted this is if you are diagnosed with chronic pain disorders please research and talk to other health care providers because i believed the Fibromyalgia diagnose for years. It wasn't until I went to a chiropacter and an outside PM doctor that told me I do not have it basis on my symptoms. They really cared about me and made me think about what else it could be, they stayed on me to get retested and get help. I thank God and them for it. I didn't want to type this since I'm a private person but I feel like God has given me the strength, love and grace to slowly heal and also help others along my journey.

I pray for everyone with this disease.

 

[JustRachel]

Thank you for posting! My husband has been living with chronic pain for a decade. He was tested for Lyme disease sometime near the beginning. I recently told him that he needs to be tested again. I will push him harder for the test. <3

 

[Kayann246]

Thank you. I've learned that the disease can leave your bloodstream so when there is a blood test done, of course, it will be negative. That was the reason for my false negative testing. Also, I do have co-infections. Most people that have Lyme disease have co-infections as well. Don't forget testing for those co-infections.

Once I spoke with the Lyme specialist and the CDC, there number one diagnosed is the rash and symptoms first. The VA and other doctors are not doing the correct recommended testing.

I will pray for your husband's healing.

HHS federal research updates on Lyme disease diagnostics | Lyme Disease | CDC

Two-step Laboratory Testing Process| Lyme Disease | CDC

 

[Southernscotty]

Kayann You have described my symptoms to a tee. I am in the woods everyday almost and I have been told it's fibromyalgia and I am most miserable so I am wondering because I get ticks all the time and have all my life. Thank you for this post Sister

 

[Kayann246]

Kayann You have described my symptoms to a tee. I am in the woods everyday almost and I have been told it's fibromyalgia and I am most miserable so I am wondering because I get ticks all the time and have all my life. Thank you for this post Sister

You're welcome. God is using my journey. I started Buhner's protocol a month ago. The collagen alone has helped with arthritis and knee pain. It's herbal so no scary long-lasting side effects of antibiotics that may or may not work.

 

[paul1149]

@Kayann246 , I wonder how you're doing. The Buhner protocol is literally saving my life. My lyme (neuroboreliosis, plus bartonella) was so advanced that it has taken three months to register definite improvement. Most of the problem was ironing out the protocol, but now it seems to be coming together. The man and his work is a godsend. Previous to that, nothing worked, not even a very expensive lyme specialist.

Ping: @Southernscotty @St_Worm2

 

[Southernscotty]

@Kayann246 , I wonder how you're doing. The Buhner protocol is literally saving my life. My lyme (neuroboreliosis, plus bartonella) was so advanced that it has taken three months to register definite improvement. Most of the problem was ironing out the protocol, but now it seems to be coming together. The man and his work is a godsend. Previous to that, nothing worked, not even a very expensive lyme specialist.

Ping: @Southernscotty @St_Worm2

Still suffering the pain. The Dr says it isn't Lyme disease but is fibromyalgia and arthritis. I am trying to make it as long as possible without medication but it is to the point that I am having trouble walking now.
I am so happy to hear that this is working for you Brother, Praise God.

 

[Kayann246]

@Kayann246 , I wonder how you're doing. The Buhner protocol is literally saving my life. My lyme (neuroboreliosis, plus bartonella) was so advanced that it has taken three months to register definite improvement. Most of the problem was ironing out the protocol, but now it seems to be coming together. The man and his work is a godsend. Previous to that, nothing worked, not even a very expensive lyme specialist.

Ping: @Southernscotty @St_Worm2

That's awesome. I'm so happy to hear that you are improving. I'm a private person but the Lord put it on my heart to share my story. I hope my story saves and heals even one person. I believe I'm in remission but with this illness, you never know. I did see a ID doctor. They believe the Lyme is dormant in my bloodstream BUT encouraged me not to seek a long term antibiotics treatment because of the side effects and reduced success rates. The ID doctor still believes my diagnosis of Fibro and ME (Chronic Fatigue Syndrome) was triggered by the co-infections. I want to say I'm ok because my symptoms are manageable but they change from day to day, month to month, year to year. But I've learned to manage them better and take it one day at a time. My migraines are less frequent and severe. I rarely have dizzy spells but I deal with fatigue daily. Please use your story to be a testimony of God's grace and wisdom. He wants us to help each other on our journey in this temporary place. I pray for compassion and comfort on your road to recovery. May the Lord continue to guide you in wisdom and love.

Here are two of my favorite songs from my favorite place of worship that has bought me through.

 

[Kayann246]

Still suffering the pain. The Dr says it isn't Lyme disease but is fibromyalgia and arthritis. I am trying to make it as long as possible without medication but it is to the point that I am having trouble walking now.
I am so happy to hear that this is working for you Brother, Praise God.

Praying for you. Have you heard of the Mucinex (Guaifenesin)protocol? I read about it the other day. I've never heard of it but there seem to be good reviews of it for fibro. I read some reviews for Mucinex on Amazon. It seems many people are using it for Fibro with good results. I may try it after my move because it seems like you get worse before you get better.

 

[Southernscotty]

Praying for you. Have you heard of the Mucinex (Guaifenesin)protocol? I read about it the other day. I've never heard of it but there seem to be good reviews of it for fibro. I read some reviews for Mucinex on Amazon. It seems many people are using it for Fibro with good results. I may try it after my move because it seems like you get worse before you get better.

I have never heard of that but thank you so much for this information and I will google that and see.
God bless you friend :]

 

[mama2one]

I believe I'm in remission but with this illness, you never know. ]

that's great you're in remission!

 

[Silverback]

I don't know where to start because it has been a long journey. 9 years ago, yes 9 years, the day after mowing the grass in NC, I noticed a rash on my inner arm. I didn't think anything of it. It was there for a few days and went away. That is when the terrible symptoms started. Headaches, dizzy, weakness, chronic pain, bedridden for weeks etc. I went from doctor to doctor to try figure out what was wrong. I went to university doctors and major clinics, still no answers.

After months of driving and trying to figure out what was wrong with me while my then husband was deployed and having a new baby, a neurologist diagnosed me with Lyme disease because my test was positive. I have never heard of Lyme disease but I was content to have a diagnose. But since he was a private doctor that I could no longer afford, I switched over to approved doctors through Tricare and the VA. They look over my medical records from the many doctors I was visiting. They decided to test me for Lyme again. I was tested over and over again. Those tests were all negative. Even blood tests I received at Duke and UNC and U of M. It was confusing because my health continued to decline. I could no longer maintain relationships, went through a divorce, moved back home, a single parent trying to get help from the list of doctors that denied I even had Lyme. Instead, I was diagnosed with fibromyalgia, chronic migraines, arthritis, nerve damage, anxiety, depression, personality disorder etc. I'm being seen by pain manangement, physical therapy, nuerology, hemology, primary care and many other doctors because of all the symptoms and declining health. It has been a nightmare.

To try to make this short, I pray and grew close to God at this time, sometimes my faith was shaken but I feel like my prayers are being answered and God has made a way. I found a great Lyme doctor here in Michigan, I found a great Lyme protocol that I started a month ago that is making me feel better slowly and I'm finding the light at the end of the tunnel with God and his grace.

The reason I posted this is if you are diagnosed with chronic pain disorders please research and talk to other health care providers because i believed the Fibromyalgia diagnose for years. It wasn't until I went to a chiropacter and an outside PM doctor that told me I do not have it basis on my symptoms. They really cared about me and made me think about what else it could be, they stayed on me to get retested and get help. I thank God and them for it. I didn't want to type this since I'm a private person but I feel like God has given me the strength, love and grace to slowly heal and also help others along my journey.

I pray for everyone with this disease.

I have seen that exact thing when I was in the Navy, stationed in Greece. A reservist was doing some active duty, and she came in with what appeared to be some vague viral symptoms. When she returned a few days later worse, I sent her to the Doctor who ordered labs, one of which was to rule out lyme disease. All the labs came back normal. At some point someone made the call, and after six months she was treated, and it resolved.

This is what happens when Doctors treat the labs, and scans, instead of the patient.

 

[paul1149]

Still suffering the pain. The Dr says it isn't Lyme disease but is fibromyalgia and arthritis. I am trying to make it as long as possible without medication but it is to the point that I am having trouble walking now.
I am so happy to hear that this is working for you Brother, Praise God.

Thanks. I am not a doctor, and this is not medical advice. But I do have a story to tell and some insights to give which may help. Almost every doctor I saw swore that chronic lyme doesn't exist. The medical industry (and that is what it is, replete with unethical self-interest) is woefully behind the curve on lyme and filled with misinformation.

Lyme is the great imitator. Because it attacks the myelin sheaths around the nerves, it looks like MS or ALS, or countless other neuropathies. Because it feeds on the collagen in joints and tendons, it looks like arthritis. Because it attacks the endothelial layer of the blood vessels and heart, it looks like cardiac disease. And so on.

Now, couple that with the fact that the standard lyme test is virtually worthless, and that the tell-tale rash doesn’t always show up, and you have a profound diagnostic problem. I tested negative for lyme just 6 months ago, when I actually had Stage 3 neuroborelliosis and bartonella – ie, neural lyme and a coinfection. It took two expensive tests, which most doctors do not use, to verify the disease.

The antibiotics did not work for me. Once the disease gets embedded, it is too smart for them, plus the strong antibiotics are not without seriously deleterious side effects. I tried extended fasting too, but that didn't help. What has helped is medicinal herbs. The first thing that Buhner's book did for me was impart hope. Because my situation is so advanced it has taken three months to see a little progress. And it does get worse before it gets better, but in my case, as long as I take the herbs regularly, the symptoms first were held in check, and now are improving. My biggest problem has been finding the right auxiliary herbs, eliminating the ones I don’t get along with, and adjusting dosages. Most of that seems to be behind me now.

If I may, I would suggest trying out the core Buhner protocol. It consists of only 4 herbs. Start with very light dosages and check for side effects, then increase. If you have any qualms or are on other medications, check with your doctor to make sure there are no counterindications. If you have neural symptoms, a fifth herb becomes critically essential. If it doesn't work, no big investment. You can find much of the protocol at buhnerhealinglyme.com, but the book itself literally is the "bible" of treating lyme in my estimation. Were it not for it, I would not be here at this point.

 

[paul1149]

I want to say I'm ok because my symptoms are manageable but they change from day to day, month to month, year to year. But I've learned to manage them better and take it one day at a time.

Thanks Kayann. I'm really glad you've made big progress against the disease.

You are so right about the changing symptom profile of Lyme, and that it can trigger other diseases. Dealing with this is a day-by-day experience. As Buhner says, treat the symptoms, starting with the worst. It's ironic, because I'm the guy who never would put any supplements in my body, but I've learned much through this disease.

I had stood for healing in Christ Jesus, which I fully believe in. But it didn't come and I got the release to go the herbal route. I'm beginning to see that maybe it's better this way because I can help more people with similar problems.

 

[FireDragon76]

I don't know where to start because it has been a long journey. 9 years ago, yes 9 years, the day after mowing the grass in NC, I noticed a rash on my inner arm. I didn't think anything of it. It was there for a few days and went away. That is when the terrible symptoms started. Headaches, dizzy, weakness, chronic pain, bedridden for weeks etc. I went from doctor to doctor to try figure out what was wrong. I went to university doctors and major clinics, still no answers.

After months of driving and trying to figure out what was wrong with me while my then husband was deployed and having a new baby, a neurologist diagnosed me with Lyme disease because my test was positive. I have never heard of Lyme disease but I was content to have a diagnose. But since he was a private doctor that I could no longer afford, I switched over to approved doctors through Tricare and the VA. They look over my medical records from the many doctors I was visiting. They decided to test me for Lyme again. I was tested over and over again. Those tests were all negative. Even blood tests I received at Duke and UNC and U of M. It was confusing because my health continued to decline. I could no longer maintain relationships, went through a divorce, moved back home, a single parent trying to get help from the list of doctors that denied I even had Lyme. Instead, I was diagnosed with fibromyalgia, chronic migraines, arthritis, nerve damage, anxiety, depression, personality disorder etc. I'm being seen by pain manangement, physical therapy, nuerology, hemology, primary care and many other doctors because of all the symptoms and declining health. It has been a nightmare.

To try to make this short, I pray and grew close to God at this time, sometimes my faith was shaken but I feel like my prayers are being answered and God has made a way. I found a great Lyme doctor here in Michigan, I found a great Lyme protocol that I started a month ago that is making me feel better slowly and I'm finding the light at the end of the tunnel with God and his grace.

The reason I posted this is if you are diagnosed with chronic pain disorders please research and talk to other health care providers because i believed the Fibromyalgia diagnose for years. It wasn't until I went to a chiropacter and an outside PM doctor that told me I do not have it basis on my symptoms. They really cared about me and made me think about what else it could be, they stayed on me to get retested and get help. I thank God and them for it. I didn't want to type this since I'm a private person but I feel like God has given me the strength, love and grace to slowly heal and also help others along my journey.

I pray for everyone with this disease.

Any kind of disease or stress that is unrelenting and endured for a period of time can trigger fibromyalgia and chronic fatigue.

I was diagnosed with fibromyalgia at age 35, about 7 years ago. There are no magic cures but there are things you can do to edge yourself towards feeling better. Getting enough vitamin D and magnesium has probably been the biggest help, as has been avoiding stress and getting a different perspective on life. I had to change things in my life before I started getting better.

 

[mama2one]

. I had to change things in my life before I started getting better.

my attitude has changed as not ashamed to take help/rest
i.e. if am really bad on a grocery shopping day, no longer afraid to use the motorized cart at store

learned to say "no" for doing extra things for others outside immediate family as only have so much energy per day

learning to say no was the hardest as before fibro, could do anything and everything and would volunteer, take on extra work, go out of my way

knowing my limits is hard but have to abide by that because when I overdid it, ended up bedridden for a couple months so don't want that to happen again

once told husband, am the most optimistic person I know
am thankful for what can do in a day and whatever is leftover goes to another day, lol

 

[FireDragon76]

my attitude has changed as not ashamed to take help
i.e. if am really bad on a shopping day, no longer afraid to use the motorized cart at store

learned to say "no" for doing extra things for others outside immediate family as only have so much energy per day

learning to say no was the hardest as before fibro, could do anything and everything and would volunteer, take on extra work, go out of my way

knowing my limits is hard but have to abide by that because when I overdid it, ended up bedridden for a couple months so don't want that to happen again

once told husband, am the most optimistic person I know
am thankful for what can do in a day and whatever is leftover goes to another day, lol

Learning self-respect is important to heal from this disease. Many people with fibro have people-pleasing tendencies. I know I did. I did not always do a good job valuing myself.

Also, I came down with fibro at a time I was involved in an Orthodox church that was very spiritually intense and demanding. I had some of the same types of experiences Luther did, of self-doubt and religious anxiety. That took years to unlearn, even after I left the church. For a period of time, I had to walk away from the Church altogether, and that gave me space to just be me. Cutting ties with anything that is crushing your spirit may be necessary.

 

[mama2one]

when I was working, got massotherapy by a person with extra training for fibromyalgia and that did help me enough to get through work week

so would highly suggest anyone working to try massotherapy (not covered by insurance) by someone trained for fibromyalgia as it's specific not just a massage
felt the effects of it helping for a day or two enough to enable me to work part time

 

[FireDragon76]

Another thing to try is cannabidiol or CBD from hemp, if it is legal where you live. It works much better than most perscription medications for fibro pain.

 

[mama2one]

Another thing to try is cannabidiol or CBD from hemp, if it is legal where you live. It works much better than most perscription medications for fibro pain.

was wondering about that but don't think it's legal here yet

only went to rheumatologist who dx me few times as he just suggested moving out west to less humid state if wanted relief....still wanting to move, lol