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My Doc's response to LYME disease
10 Replies
nburnett5 - October 20

Ok so all of this telling us that we have Lyme disease is not right. According to my Rheuma and my research and seeing photos, they all say that you will see an infected area. Not necessarily where you might have been bitten from a tick, but a huge red area on your body that you can not miss due to a tick bite. If you haven't seen this anywhere in your body and you never experienced a tick bite, It would be safe to say you dont have Lyme.
I say this with the same concern and right motive as Robin, but to mention it with everyone that rights on the forum with a question or concern is not right to me.
Yes we should mention it to our Doctors, but to worry us of such a serious disease is worrisome in itself.

 

Gabbie - October 20

Thank you nburnett5. I politely responded to Robin's many posts of lyme and I see that she has continued to comment on every new post from today. I have been diagnosed with fibro by a rheum as many of the others posting here have and I'm certain that like myself they have also been subjected to extensive blood tests and lyme along with many other things has been ruled out. I wonder how Robin would feel if we went to the site that she continues to mention and insist that all the people there are suffering from fibro and not lyme. I am sure, Robin, that you were frustrated to find that you were misdiagnosed but that does not mean that the rest of us have been also. We are on this site to share our symptoms of Fibro and to help one another with understanding and compassion. I'm sure any comments and information about lyme would be more appreciated on the lyme disease site. You comments and insistance that all of us are suffering from lyme is surely causing more frustration and panic for many of the people coming here to find help dealing with fibromyalgia. Please, have consideration for us.

 

nburnett5 - October 20

Yes Gabbie, thank you. I just want to say that it is not my nature to put anyone down and we are all aware that you (Robin) want us to mention it to our Doctors, (as I have). But I think Gabbie is right, we all need to support each other with what we are dealing with now. I am glad to see though that (Robin) is dealing with her disease and that she is getting the care she needs.
In the mean time, we all need to have consideration to everyone elses concerns and be uplifting. As Iam finding more people that I know coming up with this disease it really makes me wonder how exactly it comes about.
I have seen some other info about woman with breast implants also getting fibro and other bad diseases from implants that their body has rejected. So would they have Lyme too. I know 1 friend that has Lupus and Fibro. not Lyme. Dont mean to push the subject.

 

Gabbie - October 20

I wonder myself what causes fibro although I have thought that maybe stress in ones life may have something to do with it. Although formally diagnosed just this past year, I really believe that I' ve had this for many years but blamed the symptoms on other things. Also years ago, I only suffered with one symptom at a time. My knees would hurt then it would go away. Then I thought I had sciatica (but maybe it was fibro) and that subsided, then my elbows would hurt and let up.; The list goes on which includes pretty much all the things that fibro includes, including other symptoms in addition to the pain. It was only the last couple of years that each of the symptoms started and as time went on, more and more things were added and none of pain went away anymore. It just stayed and became more constant. My first "ache" was in my knees, about 15 years ago and started after about 1-1/2 years of stress that included the loss of a very young and dear friend, followed by my father-in-law and then 2 months later, my Dad which was very sudden. I am a worry-wort, I have a tendency to stress, have my feelings hurt very easily and so on. I would be interested in hearing if others have this "type" of personality because I wonder if that contributes to fibro. Maybe that's why it's so hard to diagnose since nothing out of the ordinary shows up in the blood or x-rays or any other test. Any opinions from anyone else about this possibility?

 

Robin1237 - October 20

Hi nburnett -- Only about 20-30% develop the red bull's eye rash after being bitten. If they do, that for sure means a Lyme infection and people need to start antibiotic treatment immediately. I didn't have any symptoms from my tick bite at the time. So when my symptoms started three months later, with sore shoulder muscles, sore neck muscles and then full-blown muscle pain that was called fibromyalgia by a rheumatolist, I never knew all that was from a tick bite. I went 25 years before being told. That's why I'm here -- not to scare you or worry you, but to inform you that so many people with Lyme disease present with fibromyalgia. I think the best place for you and others to at least take a look at the discussion is at lymenet. Just do a little reading about it and see what you think after reading what people with Lyme and fibromyalgia symptoms have to say(see the post I mentioned in recommended reading, plus you can do a search for fibromyalgia there). Doctors don't always understand what's going on. That's why us Lyme patients are communicating now. I have helped many of my prior doctors to understand what really happened to me, because they didn't know at the time, and so many doctors still don't know about the symptoms of Lyme disease and the coinfections. The doctors who do know about Lyme disease are called LLMDs, meaning Lyme-literate medical doctors. They are connected with the organization ILADS(International Lyme and Associated Diseases Society; www.ILADS.com) I think we have to go to a doctor connected with ILADS because they know how to recognize the symptoms, test for them and treat them. I know I must be trying your patience here, but bear with me -- I mean no harm, and only wanting to help people with fibromyalgia take a look at the case for a Lyme diagnosis. If so, people need treatment. When I did clindamycin antibiotic 150mg 4x/day, my fibro symptoms went to zero in one week. That's a tremendous result, don't you think? That antibiotic treament is the only treatment that ever got that fibro pain to disappear, meaning I was treating a bacterial infection, in my nerves, in my soft tissues. The pain was down for six months and now I'm having to figure out whcih treatment I'm going to try next. We're all different, and different treatments work for different people. My treatment result is the reason I'm talking with you here, because I do want to see people have a chance to feel better, instead of having to suffer all the rest of their lives.

 

Robin1237 - October 20

Sorry, guys, I responded with a long post to nburnett before I saw the rest of the discussion. Bloodtests don't always pick up Lyme, and that's why it's also a history/clinical diagnosis that gets tested with antibiotic treatment. If you went to the site I'm nmentioning, all those folks with fm symptoms know now they have Lyme. And Lyme disease presents as lots of different conditions because the bacteria invade our nerves and soft tissue. And Gabbie, the one symptom at a time is a classic Lyme presentation, as the bacteria affect different parts of us. All I am asking is that you folks study Lyme symptoms, like I did, to see what you think about what you are reading and what you are experiencing. Please, I don't mean to harm here, but to help.

 

nburnett5 - October 21

thank u robin1237, I understand.

 

JJ1 - October 21

I don't think my doctor ever checked my for Lyme. I have gone to some of Robin's links and they do say that the tick, the tick bite and the inflamation are not always noticed. The ticks can be very small (pinhead), the bite could be on a part of the body you would never see a rash (such as on your scalp). I have read a number of articles about people being mistakenly treated for Lyme and it turned out to be fibromyalgia, so it seems to go both ways. I don't think anyone can say ALL cases of Fibromyalgia are Lyme disease any more than they can say all cases of Lyme are Fibromyalgia. There are also a number of other ailments with similar symptoms.

 

SarahO. - October 26

A huge red area on your body?

That is simply not true. It's a clearly demonstrable untruth.

If you look at the CDC website or ANY reputable website you would see that the EM rash does NOT tend to stick around and that only a fraction of people EVER have a rash.

Your Rheumatologist is plain ignorant or incredibly fanciful and your putting it down here as fact makes me wonder what your motives are- because that is simply not true and it does NOT say that ANYWHERE on ANY site.

Most people never notice ticks because it is the nymphal ones which are responsible- and they are as tiny as the period at the end of this sentence AND release an enzyme which numbs the skin when they bite.

EM rashes *rarely* stick around long at all.

ANYONE can go to ANY site with ANY info about Lyme and there will NEVER be the following information:

According to my Rheuma and my research and seeing photos, they all say that you will see an infected area. Not necessarily where you might have been bitten from a tick, but a huge red area on your body that you can not miss due to a tick bite. If you haven't seen this anywhere in your body and you never experienced a tick bite, It would be safe to say you dont have Lyme.

 

skidoo - October 26

But you cannot say ALL fibro sufferers have lyme any more than you can say ALL lyme sufferers have fibro. Tick bite or no tick bite.

 

SarahO. - October 27

Skidoo, I absolutely agree with you- all fibro people do NOT have LYme disease or other TBDs- but in my experience- in an endemic area- many do who are first diagnosed plain fibromyalgia- and they can get rid of pain.

I would hope you would want anyone here to get out of pain if they can.

I was in agony 24 hours a day 7 days a week for over 2 years. I used to go into the laundry room away from my children and just lay my face against the cool metal of the washer and just try not to cry when it was bad.

I haven't had pain for years and years now.

It is awesome*)!*)!*!)!

I hope the same for you folks. Really.

I know over a dozen people who formerly had fibromyalgia that was Lyme disease and only a couple of them had a rash or tick bite to start with.

I went to TWO Rheumies who told me they could not help me get better. 2!!!!

Dr. Lester MIller in SC and Dr. T Ramanujam in SC- they said I had to live with the pain and learn to live with it.

They were wrong.

If you go to LymeNet.org and go to the Seeking Doctors section you can find a Lyme doctor near you and find out. A Rheumie will rarely know anything about TBDs even if they think they do.

Here's a way to tell!!

If they didn't test you for Babesiosis, a TBD which can share all the same symptoms as fibromyalgia as well, theyknow notihng about Lyme, period.

So ask for your files.

If they tested you for Babesiosis, theyknow what they are doing.

Most likely, they will say, "Ba-what?" and not know anything.

Take care you guys-
Sincerely,
Sarah

 

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