This post is geared toward those with a Fibromyalgia diagnosis, but might be a good read and please share this information as I feel it could help people find answers and a path to a normal life.
I know this post is going to offend. Ok maybe REALLY offend. But with the recent great article posted by Envita, I think this topic needs some further dwelling and consideration. But readers, I am blogging with all the good intentions as I want nothing more than you all to get your lives back. Many of you are completely debilitated, and your lives have been destroyed.
I am hoping that you can all read this with an open mind.
This one really hits home to me since I was misdiagnosed with Fibromyalgia and CFS at the age of 21. I was an overachiever and had all the “trigger points”, IBS, and my blood work didn’t give any revelations so I got slapped with the FMS diagnosis. I had little improvement in the next few years, other than a bit more energy by cutting gluten from my diet.
By the age of 25, in September 2012, I found myself at a Lyme Literate Doctors office as I could no longer feel my left leg. And then came my real diagnoses and my journey began.
I write this for those with Fibro in hopes that you will consider seeing a Lyme Literate Doctor. It could save your life.
Please read my story. Start from the beginning. My first post was on June 22nd. I guarantee that my story will sound very similar to yours. You have been there. You will understand.
Across the United States, there is an estimated 5 million cases of Fibromyalgia. That is a lot! It generally effects women from the ages of 20-50 but no one is exempt from having Fibro as men, and those older and much younger can also be diagnosed with FMS as well.
The Mayo Clinic describes Fibromyalgia as a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory, and mood issues. Researchers believe that this condition amplifies painful sensations by affecting the way your brain processes pain signals.
Like it or not, I am trying to help those who are NOT getting better. I only wish everyone to feel well. Fibromyalgia is term that describes an array of symptoms… it is technically not a diagnosis. Many doctors slap this on you when they cannot find the root of the problem. Many prescriptions have probably been prescribed to you. A variety of antidepressants: Cymbalta, Savella, Prozac, Anticonvulsants: Lyrica, Neurontin, Painkillers: Percocets, Vicodin, and other medications such as Ativan, Klonopin, and Xanax have been prescribed. Some have found relief with these scripts, but truth be told many are used to treat Lyme symptoms as well. With Lyme, your kill the bastards, treat the symptoms, keep your immune system in check. So these are fairly common tools. You are also told to exercise, sleep, and eat well. Ok. Easier said than done. Especially when you feel like dog doo. I HAVE BEEN THERE!
Although it has been said there is “no known cause” for Fibromyalgia, researchers are now beginning to see some things in blood work that can be linked to having Fibromyalgia. Inflammatory markers, hormone production, HPA levels, Vitamin D levels…. Once again… things that commonly also pop up with Lyme disease.
In my personal opinion, after this diagnosis that I had accepted even though it never felt right, and progressively got worse, even by doing “all the right things”, I do not believe Fibromyalgia exists. There, I said it. Hate me or not. I say this not as if your pain and suffering is not real, because it is indeed VERY REAL, but I am saying this because there is a legitimate cause for how you are feeling. And it could be Lyme.
I will share with you some important facts about Lyme disease:
– Lyme disease is also called “the great imitator”. It is called the great imitator because Lyme mimics so many other diseases and illnesses, including Fibromyalgia and Chronic Fatigue Syndrome (As I am sure you all are aware, when you get a FMS diagnoses you generally also get a CFS diagnosis as well). A picture to illustrate some of the most common illnesses and diseases Lyme mimics:
– Fewer than 50% of people with Lyme disease get the classic “bulls-eye rash”. Only 25-30% of people with Lyme recall being bit by a tick.
– Lyme is not just a “New England thing”. It has been reported in every single state in the U.S, and every continent, except Antarctica.
– If you are reading this thinking, “well, I never had a positive Lyme test!”.. think again. The test that is generally given is called an ELISA test. It produces false negatives SEVENTY PERCENT of the time. The test that I highly recommend is called a Western Blot and the best company I have found is Igenex. Their website is http://www.igenex.com if you would like further information about the test as well as another test they provide called a PCR. Although the Western Blot is more reliable, the tests are still flawed and a clinical diagnosis can be made by a LLMD (Lyme Literate Medical Doctor).
If you get the test from a doctor that is not Lyme literate, get your hands on a copy. The CDC holds a different set of standards than ILADS (International Lyme and Associated Diseases) do. The CDC requires 5 bands to be positive, while if you have bands, you are positive. Everyone just doesn’t go walking around with the Borrelia Burgdorferi bacteria in their body. It is like saying you are “a little pregnant”. Once again, good doctor = clinical diagnosis.
A chart of some of the symptoms of Lyme:
A chart of some of the symptoms of Fibro:
Look familiar? As you can see there is an extremely high overlap in symptoms.
Dr. Daniel C. Dartini has found 70% of patients with Fibromyalgia to have a viral or bacterial cause for their illness. Being sick, your immune system depresses, causing a worsening of symptoms. Many things can also trigger a worsening of symptoms or “flares” such as stress. He found many to have food allergies and sensitivities, and has treated many with a short course of antibiotics such as doxycycline (Lyme first line of defense) to find that many had improvements.
I am not a doctor. I am just sharing information to those who have been sick for years and never see improvements. I truly believe that there is a real cause for your suffering. Lyme disease. A diagnoses that can finally give you the answers you deserve and with the right treatment plan, you CAN get to a symptom free level of remission.
http://www.mayoclinic.com/health/fibromyalgia/DS00079, http://www.ilads.org, http://www.cdc.gov, http://www.igenex.com, http://www.fmtlc.com, http://www.collectiveevolution.com, http://www.4fibromyalgia.com, mylymediseasetreatment.com,lymedisease.org, fmnetnews.com,www.niams.nih.gov, http://www.envita.com/lyme-disease/the-surprising-link-between-fibromyalgia-and-lyme-disease Illustrations http://www.docstoc.com/docs/78023043/Symptom-Checklist-Lyme-disease-evaluation, http://www.erheumatoidarthritissymptoms.com/fibromyalgia-symptoms
kimmiecakeskickslyme 
Very well written and informative post!! I’m sure it will help many many people finally get some real answers and hopefully some much needed relief in the future.
Thanks! That’s my intention! Hopefully some will consider it. I was “stuck” on Fibro for years because I didn’t know any better by taking too much trust in what I was told and didn’t do my own research.
I have a false positive on my lupus test–have about 80-90% of the lyme symptoms – willing to give this a shot as I am slowly going down hill. Only 60 and feel 85 Thanks for this (also, can you address the ‘lupus’ connection? as lupus, M.S. and fibro. all seem to intersect! can they all be linked to Lyme??)
Yup 🙂
Thanks for another informative post, Kimmie!
why thank you 🙂
Thank you very informative, Iv’e been diagnosed with Fibro here in UK from NHS now waiting to see the only LLMD in UK.
You’re welcome. Wishing you luck!
Good luck! Where is this doctor by the way?
I don’t use names but mine is in DC 🙂
Hi Claire,
I have had fibromyalgia 14 yrs now and also have artharitis all over but very bad in the spine.
I’m surprised your doctor send you for the test straight away. I hope your not suffering to badly, and like you I’m in the UK too.
My LLMD called Fibro a “garbage can diagnosis.” He thinks it’s a cop-out, for doctors that don’t know what’s wrong with you and are out of ideas.
I got diagnosed with all sorts of things, Fibro among them. It’s effectively a syndrome, though, which just means it’s a particular constellation of symptoms that often occur together. But there are all manner of diseases that can CAUSE that constellation of symptoms. Treating for fibromyalgia is just treating the symptoms, not the cause.
I wasted a lot of years being sick because a rheumatologist basically told me that antidepressants were all they had to offer. And if those didn’t work, well… sorry?
I am glad I am not the only one who thinks this.
I did the same thing. I held onto that diagnosis for a long time…. my Dad even told me about a year after to go get a Lyme test and I insisted I already had a test (an Elisa crappy one) and that there was NO WAY I could have it…. wish I had listened up!
Thank you for your informative report. When I first read about this connection, I cried off & on for hours, thinking I may have wasted the last 10+ years treating the symptoms of FMS, when that might not be my problem! Then I decided I should be glad that it’s possible to find a cure, or better treatment of my symptoms. I’ve been on neurontin, cymbalta, lyrica, and various antidepressants. But sometimes I wonder why none of it works. I refuse to ever take neurontin or cymbalta EVER EVER! Neurontin made me “goofy headed” & I lost 3 years of my life taking it, because I don’t remember alot of what happened during that time. Cymbalta made me fall alot. I had a couple of ambulance rides from the falls. I cracked my head open on a concrete wall when I fell once. Had to have 6 staples in my head. Another fall, ended up being whip lash, & they thought I’d broken my neck @ the ER. I was tested during that time for parkinsons, epilepsy, and several other diseases, that I was glad the tests were negative. Then, I couldn’t get my Rx’s for a month due to an insurance mix up, and I didn’t fall any of that time….so I researched it & found these to be side effects of cymbalta. I refused to take it after that. I am going to print your article off to give to my doctors, to see if my neurologist will look into it. He is very good, and has been amazing helping with my degenerative disc disease & 6 herniated discs. I know he will try to find out more. Thanks again!
We have a Dr at Vanderbilt that told us about Fibro, that there were so many patients with real pain and the doctors got together and named it Fibro. He said they had to come up with a name. I have Lyme the doctor is forcing another illness on me and I know what I have been through. I have test to prove it but they still do think Lyme exsist in Tennessee. I am fighting a losing battle that I don’t have the strength to do..
Wishing you the best of luck.
Yes… I believe in what you are saying… but to anyone trying to get on disability… don’t mention Lyme. Stick with the symptom list and dxs such as FMS, CFS, BiPolar, etc… Lyme is the kiss of death in soooo many ways. Great post Kim!
Oh I absolutely agree! I have learned the hard way by mentioning Lyme. Mainstream medicine as well as insurance, disability, ect. doesn’t have a clue! Thank you for your feedback!
You are 100% right. My daughter was treated for fbro and cfs for 3 yrs before we realised she had lyme. She was possitive with 2 bands 3 yrs ago we had no idea, the results said negative! Now she has 4 bands and is so sick. Treatment sucks but we have to do it. We have a great llmd hopefully she will get better soon. She is 16 now and her high school yrs are ruined. Very sad. I just hate lyme. More than that I hate the medical community for the treament of lyme patients.
I am so sorry to hear that, especially during high school. Fortunately for me I crashed after I was done College. That has to be incredibly hard. Glad you are in good hands and sending well wishes.
So sorry to hear of your daughter’s sufferings. It breaks my heart when kids get sick! I’ve never trusted the medical community, and though I adore my doctor’s spirit in trying to figure out what is happening, when referred to other doctors, they ignore a Lot! No one will listen to us regarding lyme due to 2 tests coming out negative for it. We don’t buy it but don’t know where to go next. Hang in there Mom! Our kids are our life, I can only imagine what you feel inside!
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Great article. Fought for last 5 years for Fibro diagnosis rather than postnatal depression. Finally realise its lyme after realising the rash and flu I had 16 years ago in oz was the lyme initial infection. No doctor has helped me. Totally and utterly useless.
Totally agree with ya!!! I gave up ins. Because idiot RA doc said fibro. Obamacare made my ppo skyrocket and since I just had “fibro” I let it go. I should have went with my gut that this just wasn’t that!! But after 5 years of a million dx fibro seemed to be the closest plus the RA doc was suppose to be the best!! More like an idiot!!! Three months later I couldn’t move out of bed!!! FIBROMYALGIA My ass!!! Xoxo.
Yup! Oh how I wish everyone with a Fibro diagnoses would keep an open mind with Lyme disease.
lol yup!
Right?!?! In 10 months I went from flu symptom to bed ridden. Not a first time run….my Mom and I have pin pointed symptoms drom early childhood. From 30-40 yrs. Of age, lived abroad and the tick problems for our dogs was insane! I can’t remember if I’ve had the rash…..I’ve had lots of odd rashes and things in my life, but can not at all recall a particular one. Still, had more good days then bad. Now…..mostly bed ridden. 45 feeling 145! Fibro my ass too!!!
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A different stance on Fibromyalgia. I hope that people will read and consider the alternate possibilites. Best wishes to everyone who is sick and suffering..
I have an Igenex positive lyme test and I am getting better w/ 3 abx 2qd but my walking is unsteady and my legs feel heavy–do you think I should go for other testing….I am wondering what else this could be?
It is not worth retesting for Lyme. Once you have it, you have it. Sounds like you need further treatment. Treatment exacerbates symptoms which is entirely normal. It might be worth getting tested for Coinfections, however… But do know these testings are also unreliable. Seek out a good LLMD, they will give clinical diagnosises and a really good one will work at improving your immune system along the way.
Love this post and great research as usual. I also had a fibro diagnosis before I found out it was really Lyme. Five miserable years. One thing I wanted to add: From blogging I found out about people who get fibromyalgia-type symptoms from toxic chemical exposures, e.g. pesticides, Sick Building Syndrome, and other types of chemical poisoning. A lot of these people don’t have Lyme, or at least have tested negative on good tests like IGeneX and Fry. So I wanted to add multiple chemical sensitivities as another cause of fibro. Other than that I agree with everything you said and have actually gotten yelled at by fibro/ME patients when I suggested they take an IGeneX test. I don’t know why people cling to the fibro diagnosis … I think fear of taking antibiotics may be a factor. Also, fibro is less stigmatized. I linked to the great Envita article you mentioned in my Lyme story on my blog and also Dr. H’s article on fibro and Lyme. Great blog!.
Yes,
I totally agree… Worked at a big fortune 500 company for 9 years total, always had allergies, but they would worsen in the building, then moved to a sanitation position, when I was stricken with almost every effect on this blogs lymes chart… When I started to notice the pods of people suffering some same symptoms … that they never had before they started working there,
I had to blow the whistle….
Called Osha
and all with their fake I know what I’m doing , test and evaluation selves…..
it was a shame ….
because at the end, all the osha field inspector could say was … we only know a LITTLE bit about the components (chemicals) your using We set the standard for toxins and everything else, and when riding with western medacine we are loosing sight of reality…..
So sad !
12 years all together I have diagnosed with Fibromyalgia, migraines, acid reflux, gurd, IBS, vision problems, all over degenerative joints, no diagnosis of the memory issues…
Hiw do we get people to open their eyes and realize, we must be more connected to our bodies to one another go back to the natural side of life
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Wonderful article! From day 1, my husband has requested lyme tests from every doctor I see. I had 2 general tests and both came out negative. Every month my body gets weaker and weaker. Diagnosed with fibromyalgia due to the fact all blood work, MRI, x rays come out clean. Have had severe headaches since early childhood. Weak since early childhood and in my very early twenties gave up on the medical system. Now at 45 I can barely walk. Use a wheelchair in public and can barely stand for more than a few minutes. At 128 weight, with a 10 lb gain from meds….we feel we’ve exhausted everyone. We live in tick land and when I lived abroad have removed hundreds of ticks off my dogs. Yet they insist I don’t have lyme. I’m exhausted! Medicaid only covers so much and I’m fighting depression because no one lisyens to us about lyme testing. NY state doesn’t do the igenix test and monetary resources are limited. I don’t buy the fibromyalgia dx. I adore my doctor. I believe she is really trying and is open to suggestions, but still insists it’s not lyme. I guess I just needed to vent.
This is a great article. Our household has insisted exactly this. As MS also has a lyme connection as well for doctors who do believe lyme disease is real.
Good luck to all of you!
It is a process to get a diagnosis! I hope you get some answers. I would suggest in the mean time of finding a doctor to do some research on your own. Foods, detox, supplements.. wishing you luck on your journey.
We have done extensive research. In fact before I met my husband, I thought I may have had CFS, through detailed research of symptoms I had since childhood. My doctor says I have earned a medical degree practically from all the studying we have done. I live on Turmeric, raw honey, black pepper and cinnamon daily along with many teas, herbs. They do help, but not enough as of yet. Still seeking. Will never give up.
great supplements. Never give up xo
Reblogged this on It's the Lyme Life 4 Me and commented:
I was originally diagnosed with Fibromyalgia and I think I was close to getting a Chronic Fatigue syndrome Dx too. Now we know better. It was really Lyme and friends.
Very interesting. Have been diagnosed with both fibromyalgia and idiopathic intracranial hypertension. I have developed facial flushing that can’t be explained by either. Thanks for your information.
You’re welcome! Hope it helps!
Oh my. This article was amazing thank you. I have Fibro from what my Rheumatologist tells me. lol. I have tried every medication there is for it. They didn’t help. They gave me Tramadol for my pain which on a good day will help me, but a BAD day nothing helps. I went to an Infectious Disease Dr. and she ran every test under the sun. My lymes test comes back at .98 equivocal. I don’t know what that means. I am now anemic and have a vitamin D issue. I don’t know what to do. But my I.D dr told me that I did have the human strand of Parvo. I don’t even know what that is. Your article was great I will be paying my DR a visit again. They ran labs over a year ago and they were the same and the ones they ran just 2 months ago. Im at a loss. Any idea’s? Thank for all the help! hope everyone is doing better!
I would suggest seeking out a Lyme literate doctor. If you have a FB there are many groups out there, and someone should be able to point you in the right direction. MDjunction’s website also has a forum that you can request information and someone will privately send you a list. You can also visit ILADS website and they will give you information. Good luck to you
Bless your heart. You are doing a fantastic job educating others. Thank you!
You’re welcome ❤
Ok everyone, lets rally at maydayproject.org!!!
Thank you!! After 10+ years of being misdiagnosed bipolar and schizophrenic, dx with Lyme at 22 years old, did abx (oral and IV for 7 years) and was still bed bound. I finally came to Peru to do an herbal protocol (Buhner protocol), diet, exercise, Kambo, plant medicines and healing using the mind, body, spirit approach. I am finally starting to get better; gone from being bed bound to hiking mountains! My mom has a fibro dx but it drives me crazy that she wont get tested even after everything I have gone through. Glad you are doing better!
Thanks. Ugh it is so difficult that people won’t at least investigate the possibility of Lyme.
What a great article! this issue needs awareness and thank you for taking that risk and speaking up. I would like to add that I have been sick since I was 15 and I am now 34. at age 19 I got worse and started to go through all the standard doctors and test and of course they found nothing and diagnosed me with fibro and chronic fatigue syndrome along with depression and “psychosis” by age 22. A few doctors along the way said your symptoms sound like Lyme disease but your test came back negative and that was that. These tests are so inaccurate, plus it was never caught at age 15 because I did not have the bullseye rash but yet a Sun burn like rash all over my body . as I got sicker and sicker and my life and health started to fall apart I just knew this was much more serious. I went to a fancy out of pocket Health Center specifically for Fibromyalgia and Chronic Fatigue Syndrome. there was a brilliant doctor from Italy at the time working there and after taking 32 vials of blood! He came back to tell me that I had chronic Lyme disease! Huh? Relieved to finally have answers yet so angry that this was missed and I was robbed of my teenage and young adult years. he also said that he is finding over 80% of his patients are testing positive for Lyme anti bodies with the new (at the time) Igenex Western blot test. 80%! I knew there was something wrong with me and I would not accept the diagnosis of fibro and CFS so I kept pushing and fighting, was labeled by numerous doctors and treated horribly and unfairly but I never gave up fighting and I spent a lot of time doing my own research. I was lucky to have found this center and how the doctor was aware and educated in Lyme because that is far and few between among physicians. I am still searching to regain my health. We must bring awareness to this issue for the poor souls who know nothing about lyme, merely due to lack of opportunity to gain the information and unfortunately those that blindly believe in the main stream medical system in which is controlled and driven by big Pharm and $ Thank you and I will share this!
Glad it helped! Your story is all too familiar. Share away. I know that people get angry because they hold onto their fake diagnosis’s, but I always think it is worth it if at least one person keeps an open mind and looks into Lyme.
I got lyme last year and know I have fibromyalgia depression anxiety and overall just ask out your pain through my whole body my feet get tingly I have now I have diabetes level 2 is it’s all related someone please give me some information
Check out ILADS website to find a doc. 🙂
I was perfectly healthy. After having Lyme disease for over 3 years undetected. I finally went to a neurologist who in turn tested me. I had short term antibiotics. After 11 years of severe pain and depression. I’m changing doctors and I want to go to the root of what changed my life. Hopefully, he can help. I have no quality of life. I’m on alot of meds and I want to get off all of it. I truly believe Lyme was what changed my life. Doctors don’t want to treat the Lyme. I have been diagnosed with Fybromyalgia.
Check out ILADS and I think they can give you some doctors names
it’s sad when we have to apologize for ad fending people, isn’t it?! I totally understand why you said that. It breaks my heart. You’re trying to tell the truth. As am I. I shared this with my fb friends. I know it takes a lot for people to open their minds… But if we reach a few people, we’ve done good. Thank you for sharing this. I too was diagnosed with CFS at 14 years old and Fibromyalgia at 19 years old. I finally got the correct diagnosis after many many struggles. I have lost so much faith in the medical community. At the age of 35 I was diagnosed with late stage Lyme disease. Now, I am incurable. But I’m fighting hard to get well… and spread the truth!
thank you so much for speaking out!
http://teespring.com/stores/lymie-22
Wishing you well! Don’t give up hope!
1974 was the year that deer tick fever was being talked about I was in South Carolina guess what there was a tick on the top part of my butt check. And it had a red spot on its back? I got it off then the bulls eye came I almost died the doctors were of no help they at the time called it neither hep a or b? Well I got over this by making myself eat after about two weeks of no energy what so ever. So since that time I have hep c, Firbro, chronic pain, Cfs, it’s, clinical depression, anxiety, and other things which have been named in the above reading. Yes I was given a test for Lyme but it came back neg.. This fits right in with me so I believe I’m going to be looking into this test to see if this is really Lyme or Fibro? Very interesting
Best of luck! Lyme can also be diagnosed clinically. i hope you get answers.
Ive had cfs most my life it took doc 8 or 9 yrs to diagnose fybro i new that there was somthing mre serious going on then i read about lymes d bingo i have all the symptoms i was devastated i have gioter multiple noduals n cystes nn docs n endos r useless none of them have ever explained the crawling n sharp pains iv jst started gf wf diet to heal gut issues do u think i should treat my thyriod as all my hairs eyelashes eybrows r falling out 16 yrs ive asked my pharmacist to hlp with dosin n hes agread to help iv give up on mds n tryin to hlp my self this site is grt pls keep sharing so people r aware thk u
thank you! keep on fighting!
I was wondering how much will igenex test cost & is this the onli test i need i no ive had lymes d since i was a child iv jst started gf wf diet to heal my skin issues then i will treat my lymes i dnt av much income is a lymes doc expensive iv had so called fybro for many yrs n cfs all my life
I would seek out an LLMD. The igenex ranges in price depending on what test you take. I think the regular Lyme test is around 200$, but the coinfection panel is much higher. A good doctor will diagnose based on symptoms, and the tests are not perfect, and the coinfection tests are less reliable. Igenex is what you would want though…. But like I said, if you get a good doctor you probably won’t even need the testing.
i was a fitness instructor, artist, line dance teacher, mom, this angers me, i was diagnosed at a young age of 1988 to 89,after child #2 , i spent hours int he bush cutting firewood, hiking … i remember being bit in the abdomen, i did not connect it to the red circle i had found, when i was treated for ring worm?? i do also remember, it hurt allot more than a mosquitto bite. the chronic fatigue diagnosis was first, then lupus, then ms, then md, muscle atrophy, yes and lyme disease so they said etc…13 years of testing led them to fibromyalgia, i was ochd! it had maxed after that , my feet had collapsed, pins n needles started, bursistis started, tendinitis, other complications my muscle pain enhanced, i always knew being a mentally stable and strong minded woman that the fibro was a garbage bag diagnosis, the only symptpms i didnt have on that st was depression and bi polar(they held my pension on that fact that i was too mentally sane for my illness and no proof it was prolonged?years of trigger point injections where he kept missing led me to tumors in dangerous areas (inside my sciatica nerve and latched onto my central nervous system, these spread up to my left breast and lung now and mal formed 😦 then a routine spinal freezing for of course spinal pain they slipped poked a hole into my spinal cord pulled it and left me to leak (told i can have 7 through my life but they plug on way out and with spinal tapp needle not an ephideral needle which was 20 times the size instead of admitting to err they left me leaking i now have aracnonditis sorry if spelt that wrong, one of the membranes holding in my fluid is haf gone the other is like a sponge and im losing my arms and legs(told terminaly ill 8 years ago . do you understand if i hadnt gone to an doctor but did my own research i may of lived long norma life to think that angers me to death, they didnt have the same testing nor the same amount of symtoms listed i may if hunt for months find the original lyme disease paperwork i used to have, although for a full year i did go on heavy antibiotics from a impacted tooth even landed n iv from it it only gave me numerous allergies i never had either what a grande mess. looks like i was one of many swept under the rug from thin to fat from energetic young woman to an 80 year old 54 whats a grande mess whats the point now, and is the test costly? one large doctor mess up huh and many of
them here
Sounds like you have a lot going on. The Igenex is around 200$ I believe for a Lyme test, but significantly higher for the additional tests. A good LLMD will treat and diagnose clinically though. Wishing you luck ❤
The Oregon Lyme DIsease network did a short study in 3 FM/CFS support groups. N=67. and found that within the FM/CFS support group there were 84%,82% and 87% respectively that were positive for Lyme Disease. We recommend finding ILADS trained providers.
You are SPOT ON!!!! Thank you for this article. If you don’t mind, I would love to use it as one of the letters I send to docs offices and Legislators after I send brief one page bulleted info. Once I can get any of their attentions with the short-to the point page, I call to make sure they don’t have questions and I say thanks and then I send more detailed info. This would be a GREAT addition to any extra information!!!
You can gladly share my information, but I kindly ask that you include my website and name, as my work is copywrited. I wish you the very best of luck!
Thanks, Kimmie, for your communications about fibro being Lyme disease. I agree with you – I think most of it is Lyme. My case is very clear – I had a known tick bite in my foot in 1981 in Big Sur, CA. My symptoms started 10 weeks later, with sore neck and shoulders. 15 months later, I had full body pain, declared to be fibrocitis then, with the name changed to fibromyalgia in 1990. I met in support groups large and small – this was prior to computers, when all we had was face-to-face meetings, reporting back on what remedies helped or didn’t help. After 25 years of searching for answers and getting none, finally in 2006 a nurse 3000 miles away told me online what she thought my symptoms were. I then tested positive through IGeneX lab testing (IgM and IgG Western Blot antibody tests – not everyone tests positive who has Lyme – 27 reasons for not testing positive. It’s complicated). And here’s the kicker – I was reading by then that people take antibiotics to treat. I am allergic to most, so decided to try some clindamycin abx left over from a recent finger infection. I took 150mg every 6 hours like I’d been instructed to do for the finger infection, only this time I didn’t stop taking it. At the end of a week’s time, I had NO MORE PAIN, AFTER 25 YEARS OF IT!!! It was hard to believe – took me two years to fully take it in what had happened, since I had just been told all that time that it was fibro, an unknown condition. Folks, it’s not an unknown condition anymore. If you watch the Lyme documentary, “Under Our Skin,” for free at http://www.hulu.com, you’ll see a lot of patients saying their initial diagnosis was fibromyalgia, which basically just means pain in the muscles/fibers. It’s a descriptive term for symptoms – IT IS NOT ITS OWN DISEASE. I always recommend now that people go to http://www.lymenet.org, read up there about Lyme disease (and sometimes people have co-infections too, like babesia, bartonella and ehrlichia), ask some questions, and ask for referrals to Lyme-treating doctors in your area. WE CANNOT GO TO JUST ANY DOCTOR – THEY DON’T KNOW WHAT’S GOING ON. WE MUST GET REFERRALS TO LYME-TREATING DOCTORS, CALLED LLMDS – LYME-LITERATE MEDICAL DOCTORS. ONLY THEN ARE YOU GOING TO HAVE A CHANCE TO GET OFF THIS NOT-SO-MERRYGOROUND THAT WE’VE ALL BEEN ON!!!
Everyone should google symptoms for Lyme disease and see whether you think you match them. If so, you can go to http://www.lymedisease.org to discuss in the Medical Questions section or the General Support section. You can ask for a Lyme-treating doctor in the Seeking A Doctor section. We MUST go to Lyme-treating doctors because the others have not trained to diagnose or treat Lyme and co-infections (babesia, bartonella and erhlichia the main ones). There’s also a Search function at the top of the page you can click on to type in any word or phrase and archived discussion threads will come up that you can read through. So for example, if you want to read threads on fibromyalgia, you can there. Also, real important to know that tests for Lyme and co’s don’t always come back positive. A positive Lyme test rules you in but a negative one does NOT rule you out. There are 27 reasons why the Western Blot antibody test might not test negative. And the ELISA screening is only 50% accurate, meaning it’s like a coin toss, as compared to the AIDS screening test being 95% accurate – ie no comparison at this point in time. Hopefully in the future we will get a 100% accurate Lyme test but we don’t have it now. So don’t be put off by a negative result if you match Lyme symptoms.
Thanks for pointing out the connection between fibromyalgia and lyme disease.
I have had a cluster of mystery symptoms, that no doc is able to get a grip on; hence I was diagnosed with Fibromyalgia. Now that I know of all the symptoms of Lyme Disease which ironically I have, I got tested for Lyme at my Primary Care doc’s office. It came out negative, I am on the lookout for a LLMD who might better be able to understand my condition.
Those who have been diagnosed with Lyme; the key part to your treatment is detoxing; your LLMD would have more info on that. Amazon has some good books as to what diet, herbs would help you in your recovery.
Tests for Lyme don’t always come back positive. There are 27 reasons for that, which are listed at http://www.lymenet.org in the sticky, Important information about Lyme and co-infections. You can get referrals for Lyme-treating doctors in the Seeking A Doctor section there.
I’ve been suffering with severe pain for almost 4 years! In January of this year, I was diagnosed with Lyme Disease! I’ve been on the Doxy for almost a month, but I can’t tell any difference! I have just about every symptom on Lyme chart including Interstitial Cystitis which my urologist says is rare! I live in Alabama, and they don’t even recognize Lyme Disease! I’m scared to death! Can anyone recommend anything natural to help? I need advice because I’m an emotional wreck!
I guess my best advise would be to join a Facebook group with natural treatments or one in general… a lot of people can give advice, Drs names etc. Or try a naturopath! They are fantastic in my opinion. They treat your body as a whole and I know mine has helped a lot.
Hi Michele – I suggest you sign up with a screen name at http://www.lymenet.org and post in a couple sections there – one, in the Seeking A Doctor section, with a heading like Need LLMD in AL. Then you can post in the Medical Questions and/or General Support section about your history and your questions, and experienced patients from all over the US and also in the world will respond!! We will help orient you there to what’s going on, including re some natural remedies as well. So many of us have been through what you’re going through – ie sick and then finding out it’s Lyme. – Robin
Reblogged this on A Migraineur's Life and commented:
What is Fibromyalgia #3?
I think @Kimmiecakes explains what I have been thinking and posting about very well.
I used to holiday in S.C for several years visiting family walked the dog in woods fields etc started with flu type symptoms after one visit in 2007 then started getting most of symptoms i was given various medications eventually being diagnosed with Fibro approx 2010. I was not aware of having been bitten by a tick whilst in USA but possible could have been However i was constantly bit by Mosquitos no matter how much i covered up or how much i sprayed on myself. In the summer of 2015 i was bitten by a tick in the Uk and tested positive for Lymes i was given one months Doxy .I have found the GPs to be almost hostile since being diagnosed they wont answer questions the one doctor who did help me told me i was cured on the phone even though i hadnt had a follow up test and was angry with me . I hate this illness I am seeing a Rhumotologist on Monday but am so wary now . I find it very confusing and have paid out a lot of money with Cranial Osteopaths and Chiropractors natural remedies on limited income . Some days i look like there is nothing wrong and other days i look like a Zombie . I am coming off some medications i cut out Statins recently . I dont know if Rumo will do follow up test fo Lymes and even if you pay for tests where do you go from there ? Thank you i am saving and following x Carol U.K
Follow up tests are unnecessary. Once you have Lyme, it only goes into remission. It does not completely go away, so you can become symptomatic again. I would try to find a Lyme literate doctor. My suggestion is asking in a Lyme fb group, or a good website is mdjunction. I was emailed a list of recommended Lyme docs in my area when I was first diagnosed .Best of luck to you!
Bravo
Very interesting article! Thanks for sharing!
My doctor…has known this for years yet doctors in Houstin don’ t even have a clue what this disease entails.
Texas really needs to get in board with this epidemic.
I had lymes for years and was misdiagnosed. I was on every pill known to man for 6 months. Nothing worked. Finally, I demanded a lymes blood test. All 13 markers positive. IV for 30 days and now I’m cured. So why do I still ,have the same symptoms? The entire system is broken. Are doctors offended when they realize they are not as smart as the thought? I need help, not a pat on the back. I am constantly in pain, especially my legs. I sleep 12 hours and wake up feeling like I’ve been run over by a truck, and still exhausted. After 40 years of feeling this way, it’s starting to get a little old. Do you know what I mean?
I get it. You clearly still have an active infection and need to see an LLMD. research, ILADS can help you find a doctor or a good tool as asking on FB and people will private message you doctors names and their experiences.
@Arthur Lemise – 30 days of IV is not long enough to treat your chronic symptoms. You need longer treatment. You can also go to www lymenet org and sign up there and post in the Seeking a Doctor section for referrals to Lyme-literate doctors – LLMDs or LLNDs – medical doctors or naturopaths – who treat. Knowledgeable doctors know what to do. Everyone on the board there will know what you’ve been going through. It took 25 years for me to find out my fibromyalgia of 25 years was Lyme disease, and I had a KNOWN tick bite that preceded all the symptoms.
When I heard what I probably had, I tested positive and put myself on clindamycin, since I knew I could take it, vs being allergic to most other antibiotics, and in a week’s time, all my fibro pain went to ZERO – because I was finally treating properly – ie, a BACTERIAL infection – hello out there? Please pay attention – not all fibro is Lyme, but a big proportion of it is.
We all respond differently to different remedies and the trick is to discover what we respond successfully to,
Lyme tests may not come back positive even though someone may have it. 27 reasons for that, listed at www lymenet org, Medical Questions section, in the sticky at the top called Important Information about Lyme and Co-infections. That’s why Lyme doctors often treat clinically, by history and symptoms. Sometimes a person tests positive after some treatment, when the immune system gets stronger and more able to mount a defense.
I agree! I blogged about being anti-Fibromyalgia a while ago. Thanks for the well written article. Hope it helps others.
Thanks for bringing this up, Kim! Very important to get the word out to others who may be searching for answers. I’d say most fibro is Lyme.
Thank you for sharing this information! I only wish I had come across your blog a few years ago. I completely agree that most (if not all!) of those diagnosed with fibromyalgia and possibly CFS in fact have lyme. I live in CT, spend hours outside daily.. went from being an Ironman and marathon runner to literally feeling so dizzy, unable to get out of bed, and finally had to quit my jobs as a fitness instructor and consultant and had to hire full time help to take care of my little girls. In one year I saw an ENT(2x), primary care (countless times), neurologist (4X), oncologist, neuro oncologist, gastroenterologist, orthopedic and dermatologist.. oh yeah and an infectious disease doctor (who claimed I did not have lyme but his nurse sure thought so). I was prescribed most of the drugs you mentioned in your post (gabpentin, cymbalta, lexapro, zoloft, etc etc). Long story short – yes it was lyme – and bartonella and babesia. Throughout my nightmare of a year I was took the Elisa test multiple times -and never showed up positive. Really Doctors need to be aware that the test is a complete joke, and the bullseye rash is also a completely inaccurate method of detecting lyme. And so yes, the conclusion was small fiber neuropathy and fibromyalgia. Within 2 days of starting doxy, I knew it was lyme. Found a great LLMD and I’m on my road to recovery. hope everyone finds relief.. and if you are in doubt about whether you have lyme, try doxycycline and within days you will know if that’s what you are dealing with..
“Fibromyalgia” literally means “muscle pain”. It is only a syndrome with no known cause. I had been misdiagnosed with it 13 years ago and would not accept the ‘diagnosis’. My health had been exceptional, yet in 2004 I was bedridden with body-wide pain. The only thing that made sense to me and my husband was that I was experiencing infection, inflammation, and immune dysfunction. Our own research led us to Lyme disease. A Lyme-literate physician saved my life in 2005. Please learn more at lymedisease.org and ILADS.org. ILADS stands for “International Lyme and Associated Diseases Society”. You know your own body more than anyone else!
I agree. I have been treating for years with Lyme and cos but I was really stubborn for awhile with the Fibro diagnosis before finally getting my answer. It never felt right with the fibro diagnosis, but hey, that’s what the doctor says, it must be true!
I cannot thank you enough. I had a fibro diagnosis 6 years ago and I have only gotten worse, not better. I have lost friends and almost my business bc I can’t keep appts; I will fell fine one moment and unable to even crawl out of bed to use the bathroom the next. I have almost every symptom of mtme on the great immitator chart (only thing I don’t have, thank God, is an MS or AS diagnosis). My cognitive function and memory and speech have suffered greatly I. The past several months, and I’m scared. Thank you. Thank you, thank you. This wife and mom of 4 want her body and life back. I want to be there for my family in every way, and currently, I feel I simply only exist. Thank you!!!!!!!!!!
Sorry for the late response. I hope you are doing some healing and sending well wishes your way.