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was it lyme instead of fibro all along?

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Posted 8/5/2012 6:34 AM (GMT 0)

Hi, I am brand new to this forum, but not new to lyme forums or lyme disease itself, I was diagnosed about one year ago July 2011, I'm from nepa I had the bulls eye rash on my right outer thigh and a temp of 103.8, I went to the er they told me it was something viral and it will pass, it didnt' so I went to my family doc and was diagnosed, I also had just regular circular rashes all over my body. I was put on doxycyline for about one month and it did nothing. I'm actually a nurse but didn't pick up right away because the rash was so light and I have been suffering with severe "fibro" symptoms for about 10 years.  So I'm now being treated by an llmd since December. I've been on biaxin,ceftin,amanadine, 3wks cycled with flagyl and amanadine for one wk per month, I added iv rochephin 2 grams since march.

So despite all this treatment, I continue to get worse, I'm coming out of two month flare up somewhat, still very sick. I've been in and out of hospital, er rooms and psych hospitals because I just can't take it anymore. I'm trying to stay out because they refuse to give me my antibiotics when I am in there.

My main question that I can't get out of my head is has it been lyme all along for 10 years instead of just the past year.  Before I got sick I was the healthiest person ever, never got sick. I just want to know if someone has a similar story to mine.  My very first symptoms were butterflies in my chest, found out i had a thryroid problem, then profound fatigue for about two months, then back spasms, electric shock like feelings when trying to sleep, restless leg and arm syndrome, always feeling anxious everywhere in my body like I have to move my whole body,  very anxious feeling in my stomach, skin very sensitive like even when my body was touching my bedsheets, then came the headaches, constant burning headaches in my neck and behind my eyes, whole neck was sore. Then my whole body just became painful and stiff. Also one day at the beginning of all this , I was sitting my whole arm went numb then traveled up to my tongue it only last about 10 minutes then I passed out.

Back 10 years ago I was tested for lyme disease , the western blot which came back negative except band 58 (not def specific to lyme. I had no rash. ( I have done extensive lyme research and know all bands can come back neg and you do not have to have a rash.) I'm just pointing this out.

So now for the past year I have more of the more commone syptoms of lyme, severe stiff neck(always had this but it got stiffer) headaches are worse, whole body heaviness. I am in the worse shape of my life, I am 30. It just seems when I come out of my flares, I still have the same "fibro" symptoms I've always had for all those years. And I do have some of the specific tender points and whole body muscle pain.

This is driving me nuts, I want to know what has been wrong with me all these years,  it would be a little easier to know maybe it has been lyme all along , not saying it is easy to treat, as I'm finding out, but I cannnot do this anymore if I'm going to find out if I beat lyme, I will just go back to having fibro. And no matter what anyone says there are NO good treatments for fibro,  you are treating symptoms,  most  can't tolerate any of the pain meds, and people with just fibro don't want to address any of the infectious components, it may not be lyme , but chronic viruses ebv cmv, etc.

I'm just trying to get more input on this , I am on the verge of suicide I need to know what has been wrong with me all these years, although I really want to believe it has been lyme part of me thinks all this muscle pain will never go away.

So some things that are confusing me, maybe I have had fibro which is a disease by itself and having me immune system already so weak , I got lyme? Or did I get lyme 10 years ago, and a new occurance has given me a stronger germ load with difference and worsening of existing symptoms.

Sorry I know this is a pretty long story, but please if you have any input I would really appreciate you can share it with me. I don't know how much longer I can make it. I'm trying everything I can to get through this. thanks

Posted 8/5/2012 10:30 AM (GMT 0)
Hi seniubr11,

I can completely relate to your story. I have been really sick since last year as well. Mine was a re-infection although I didn't know definitively I had Lyme prior to last year. I've been treating for about the same amount of time as you and I have really had absolutely no improvement yet. In fact, I'm probably kind of worse than usual right now.

I think it's impossible to know whether or not your symptoms from past years were from Lyme or something else. For me, I am 100% positive my current symptoms are from Lyme and Co because they all became severe at the same time (right after a fever and several known tick bites).

I get that numbness that you talk about in your arm. I get it in my hands and legs. Several times I haven't been able to move because I can't feel my legs. It's extremely scary. It's moving into my face a little lately which is really starting to worry me.

One thing that helps me (and I am often VERY discouraged and upset by things that I can't do) is glutathione/vitamin IV's. They are literally keeping me going right now. I count the days until I can get my next one because they work so great for me. I am able to have 1-3 days where I feel so good that I can go for a jog or a long hike. On a typical non-IV day lately, I am barely able to get out of bed and I'm twitching, in a ton of pain and exhausted shortly after I get up for the day. It might be worth trying. For me it makes a tremendous difference. I don't know what I'd do without them.

Do you have a good support system at home too? That can make a huge difference if you have someone who can help you out when you aren't feeling well.
Posted 8/5/2012 11:42 AM (GMT 0)
Hello seniubr11,

Welcome to the forum!

I am sorry to hear that you have had such struggles. I hope we can help you out of this stalemate.

Personally, I would consider the fibromyalgia diagnosis as a symptom of Lyme. After all, they don't know what causes it -- it is more a description of a symptom rather than a distinct disease.

You don't mention if you have been tested for co-infections. I am thinking of Babesia and Ehrlichia, in particular. You certainly haven't been treated for them. This would explain your symptoms and why you haven't gotten better. These infections need to be addressed before the Lyme can be cured.

It may well turn out that the tests don't turn up positive, however. They are not definitive. You need to have a Lyme Literate Doctor who will treat you according to your symptoms.

Hope you get some help soon.
Posted 8/5/2012 12:41 PM (GMT 0)
Hi Seniubr,
I too think that it's quite possible that you have had Lyme all these years, although there's no way to tell for sure. I walked around with a diagnosis of Fibro for about three years - until I finally admitted that there was sooo much more going on that Fibro wasn't the 'good fit' that the doctors wanted it to be.

Have you been detoxing? The toxins that the dying bacteria are releasing are the main reason for our symptoms, so helping the body to detox would be the best way to reduce your symptoms. Frequently, those of us with Lyme and other tick-borne infections have faulty detox pathways - some are overloaded and others seem to have kind of shut down - mine were shut down for a while.

We have a great post about detoxing when a person has Tick-borne infections, plus symptom lists and a bunch of other really great info and links, in our "New to Lyme?Start here!" thread that can be found at the top of the forum. I would highly recommend that you read through that thread.

Keep on reading, researching, and asking those questions! That's the best way to be sure that you are getting the best treatment you can, and -as Achievinggrace has said, please see a Lyme Literate Medical Doctor if it's at all possible.
Posted 8/6/2012 1:06 AM (GMT 0)
Hi Seniubr,

I, too, am an RN.  You did mention that you were on the Behavioral Health Unit of a hospital and wondering if you are taking any type of a benzodiazepine?  I have run the gammit of having a toxic reaction to Levaquin to having horrible withdrawal and tolerance effects of Xanax and just got my results back from Igenix stating I am positive for Lyme's disease.  My appt. with a LLMD is later this month.  I know alot about the fluoroquinolones and benzodiazepines and am just learning about LD. 

Hang in there.  There seem to be some great members on this site.

Posted 8/6/2012 5:34 AM (GMT 0)
thanks everyone-yes this site seems a lot friendly that some of the other forums I'm on. I really appreciate all the info, it's just so frustrating that I know for sure now I have lyme , but not so sure about all these years. I know I probably won't know for sure unless all my syptoms eventually go away or get better. So I'm always trying to look back before my actual lyme diagnoses, and I'll look up symptoms that are not common with fibro that I was having like temporary blindless from black floaters, the tongue numbness, and others but something with fibro always pops up also, but makes you wonder how many with people do actually have lyme, which I know there are many. Throughout the years I have always tested positive for ebv, chlamydia pneumonia, and others, but these are also fibro symptoms. One theory I have is when I was tested initially for lyme years ago, it came back negative because I was already having symptoms for years, so my body was not producing hardly any antibodies, and now with new infection last year, it put it in full force. My cd57 has also been low for all these years, I mean low about a 16, now for the past year it's a 2. I know some doc's don't use this as a lyme marker, but my doc does, and according to a recent conference with doc B, doc B said the sickest patient have very low cd57 levels, and I do so I can't help but use it as kind of a marker because mine is so low and I am so sick and now have basically no immune function, my doctor did say he had a patient with cd57 level of 0 and they eventually did get better after I think a little over a year.

Summer3-you mentioned glutiathione- I used to do them years ago, and yes they cleared my head a lot. I'm taking oral glutiathione now. But I just can't do it with all my orals, and now I have to pay for iv's out of pocket. (still in appeal with insurance) and now my doctor suggested adding immunoglobluin im injections, whcih are very expensive, I'm stil up in the air about them. Yes I have a great family, but when I'm in so much pain, I shut myself off and don't want to talk to anyone, because no matter how good they are, they have no clue what I feel like, I would actually rather talk to people on forums, and it just seems like at work , or at the store or wherever I can go, everyone is healthy except me. And I broke up with my boyfriend of 13 years, but he couldn't handle me being so sick anymore, he was just making it worse anyway, regardless, it's still been upsetting and hard. Although I've heard at work from some people know of people who are being diagnosed more and more with lyme.

And yes me too I feel worse for the most part, flare ups are longer and more frequent but even when I'm not in a sever flare up , I still feel like crap. There are days I can exercise and stuff, but it's really hard, I push myself, pluse I work full time till this day I don't know how I do it, sometimes people are talking to me and I can't even follow their stories, feel like I'm in a different world. But I keep working because there is no way I can afford the treatment I am on now.

Acheving grace- yes I was tested for babesia and others, I guess there are only tests for the more common strands of babesia, like ducanti, etc. they came back negative, which I heard they can and you can still have it, last time I was at my doc , I told him I really feel like i have symptoms of babesia, he said probably not, but I will give you mepron if you really want. not too reassuring. He's supposed to be good, says he consults with Dr. B often but does not seem to follow his protocol. I'm actually really stuck right now wether to switch doc's or not, but there are things I do like about him, and he is somewhat affordable. I did test positive for rmsf

Traveler- yes I've been seeing an llmd since december, he does take a hollistic approach, I do detoxing, could be doing more, my diet is not good, could be a lot better. You mentioned herbs, what do you think the best herbs would be for treatment, I've been on samento and cumanda, but was not consistant, it's all about how much i could afford.

Summer 16- I do take xanax on occasion, very rarely, had to because I was becoming very anxious. I am on seroquel, low dose 50mg and have been for years, I don't want to be on it at all, but it gives me such a good sleep, plus back in the winter on some of my flares I was becoming delusional, and I would watch something upsetting or evil on tv and just keep repeating the thoughts it my head, just very scary, not that I was going to hurt anyone, but I just had very ominous and evil feelings that took over me. I just can't believe what this disease does to people, never thought my life would turn out like this, my sypmtoms started at age 20, I am know 30, I have had no quality of life for the past 10 years, and I know there are people that have been suffering longer.

Post Edited (seniubr11) : 8/6/2012 12:52:29 AM (GMT-6)

Posted 8/6/2012 1:28 PM (GMT 0)
I have lyme that has been dormnant for years and was dx with FM too.  The rheumy told me I definately had it but there was an underlying cause...like lupus, RA etc.  It was lyme all along as the main reason...
Posted 8/6/2012 5:50 PM (GMT 0)
Hi seniubr11, welcome to the forum!

I once saw a doctor who looked through my giant pile of labs from the past 15 years and commented on how my lab findings pretty much mirrored the timeline of the medical community - they seem to go through fads. At one point it was the age of fibromyalgia, now, I guess it's lyme. At one point it was chronic fatigue, at one point it was mold toxicity. All of the research being done in this whole area has a lot of little pieces to offer, but most of us (doctors and patients) want to fit our symptoms into a neat little box with one diagnosis and one cure (if only!). I tend to view my cluster of symptoms as one syndrome that can be explained in a bunch of ways - yes it could be diagnosed as lyme disease, chronic fatigue syndrome, fibromyalgia, even depression, anxiety, probably a million other diseases that I've never even heard of! Each diagnosis is more of a lens to look at the big picture through than anything else. Sometimes I get really bogged down by the thought, "what's REALLY wrong with me, then!?" and what helps is to just accept that it's uncertain, and just focus on the plus side of calling this disease many names - that there are A LOT of treatment options out there! That's just my 2 cents!

Cat's claw (samento) is supposed to be really good at getting the CD57 up - it seems to be working for me - it was either that or minocycline, but they were both done at the same time so it's hard to tell. With herbs, usually if an MD is adjuncting with them, they'll give you a much lower dose, as opposed to an herbalist who uses just the herbs and will give you much higher doses. I'm just thinking maybe the higher dose of cat's claw is necessary for boosting the cd57. Starting with a low cd57 can be challenging - mine was 11 and it took a while to get it up to near 60, at which point I feel like a normal person with a bunch of symptoms instead of a walking blob of sickness!

What does your doc say about co-infections? Testing isn't fool proof, and certain ones can prevent the cd57 from increasing, and need to be treated first. Even though it's pretty well accepted that "yes/no" testing isn't particularly accurate, even LLMDs sometimes get sucked into relying too heavily on tests and miss the giant red flags flapping around.
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