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Old 09-09-2005, 04:24 PM   #1
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anyone uncertain about lyme dx? just told by another dr chronic lyme is overdiagnosed

I am sorry if I posted something like this, but I am very upset at the moment. I finally am starting to adjust to my new diagnosis of chronic lyme disease after having a dx of CFS for years and years. Well, I just visited my friend, who's father is a internist- he works in a practice w/ infectious disease dr and rheumatollgist, among others) and I told him about the dx. He has known me over the years and he simply doesn't "buy it". He said that I most likely have CFS/FM and that he feels chronic lyme is overdiagnosed and often given to cFS/FM to give them some hope from an otherwise untreatable condition and that I would be doing a huge disservice to myself by going on long term antibiotics (I had a positve WB IGm from Igenex by the way, as well as other markers of lyme) but he said that Lyme and CFS/FM are so similar, there is really no way to tell one from the other.

I know he is not a LLMD, but hearing this stuff makes me so upset and makes me question things,. I am currently seeing a LLMD (one of the top!), but my mom is also leary and says "of course a LLMD will diagnosis you with chronic lyme since he wants your money (my LLMD currently takes my insurance by the way, i just had to pay for some supplements and blood testing)

I am so confused and I don't know who to believe. Dr. H, my LLMD, said this might happen as far as getting differing opinions, but I don't have the certainty yet to really believe in myself and know exactly what I have. I wonder, other than my positive Igenex test, how they would have distinguished CFS from Lyme, although I do have alot of neuro symptoms, but so do people w/ CFS. I am afraid of going on the long term abx and wonder if they will work or do further unnecessary damage to my body. I am also afraid of NOT going on the abx and possibly losing the chance to get better. Then, I am afraid of going on the abx and havng them not work and find out the lyme WAS misdiagnosed!

Sorry for the long post. very confused and upset at the moment!!! Does everyone dx'd for the first time go through this??? ;-(

-Nancy

 
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Old 09-09-2005, 05:07 PM   #2
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Re: anyone uncertain about lyme dx? just told by another dr chronic lyme is overdiagnosed

Sick&confused ,

What you are feeling is totally normal!! I think we have all gone through this and at times still do. Be easy with yourself and review everything.

As far as lyme disease being over diagnosed...Sorry Internist but I don't buy it!!! I honestly believe that CFS and Fibro are not disease but Syndromes and labels because Dr's can't figure out what is going on.

I think the reason we are seeing more lyme is because we as humans are not taking care of ourselves. Our bodies are stressed out from junk food, processed foods, stress in general, chemicals in everything, and pesticides. So its no wonder our bodies can not fight the lyme off the way we were designed to do.

I personnally do not believe that lyme is the only thing that is wrong in our bodies. On one thing that the Internist said I do agree on is that long term abx can destroy our bodies. There are other ways to regain our health back. Not to say that abx aren't needed at times but months and years are enough to destroy other parts of the body. Mind you this is MY PERSONAL opinion.

Again, try not to stress on what every one else is telling you. Take a peaceful space for yourself and go over the info and let your heart guide you!

~P

 
Old 09-09-2005, 05:09 PM   #3
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Re: anyone uncertain about lyme dx? just told by another dr chronic lyme is overdiagnosed

Nancy

I know how you feel. I was dx w/ lyme this past May so I'm pretty new to this too.

I was dx w/ MS 6 yrs ago and I have all the classic signs of that disease (they are also the same as lyme) and some abnormal results on the MRIs and other tests they do. Advanced lyme can also show these type of results. So I have had the same feelings as you are going through.

Even last week when I saw my LLMD I questioned her about the lyme dx. She did a panel of blood tests when I first went to see her called a Stricker panel. The idea is that if you are low on these two markers (CD57) this is also an indication of lyme based on Dr Stricker's study. I had never heard anyone else talk about this. I asked on here and several people knew about it and I saw some info on the internet that Dr Stricker spoke at the lyme conference. My LLMD also gave me a copy of his article. My point is the WB results(same as yours), the Stricker panel, and clinical dx adds up. I have also read about people being dx w/ lyme after being dx w/ ALS, MS, CFS etc.

I always doubted my MS and I didn't take the meds. I didn't have a relapse remitting course, which is what 95% of people w/ MS start out with. Maybe I don't want to admit that I am in that 5%(Primary Progressive from the start) but my gut has always told me this is something else.

I say what's wrong with hope. The abx are not as harmful as the interferon (MS meds) and I have noticed some small changes in a month. I have learned lyme will take time and w/ neuro it will take longer. My LLMD says some neuro damage may be irreversible. I am not one to take meds casually but I am going to follow my gut and see where it goes. No harm done and what else do I have.

I have seen 6 neuros in the past 6 years and they all have said not Lyme even though I hadn't had the testing. If that is any indication as to how open minded the medical community is about lyme...... it makes me wonder.

I didn't mean to ramble but I know what you're going through. I hope you start to feel better soon.

Kim

 
Old 09-09-2005, 05:20 PM   #4
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Re: anyone uncertain about lyme dx? just told by another dr chronic lyme is overdiagnosed

I couldn't say it 'as well' as the above two posts... it makes me NUTS that you had to experience this and quite honestly, I think that for a professioal who is also a friend to say such a thing is really stepping over some type of boundary unless it was said out of such concern that he really believes you are in harms way, need to change course, etc.

Doctors are to help, not harm, etc and I feel to make such a comment when not being asked for professional advice IS HARMFUL. And I am SO SORRY you had to experience it.

We patients, regardless of health issues tend to put docs on pedestals and even when we don't, they are in positions of authority and know it and thus, should be most careful in doling at opinions/advice...

arghhhh...

 
Old 09-09-2005, 06:08 PM   #5
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Re: anyone uncertain about lyme dx? just told by another dr chronic lyme is overdiagnosed

Hi Marsha,

Welcome to the Board! I am truly sorry that you have been sick for so long, I give you so much credit for hanging in there and thank goodness, you are finally on the right road to recovery.

There is one aspect that many people are not aware of: that is doctors do NOT want to admit that a person may have Lyme because most insurance companies will not pay the bills. So, it is easier for a doctor to tell a patient they have CFS, FM, MS, any disease so that the doctor knows he/she will get paid.

That is one part of it. More research has to be done, lyme testing has to be improved, and once that is accomplished, then insurance companies will have to pay. Then doctors will open their eyes to Lyme. They know it exists, but most doctors are ignorant and don't have a clue on how to treat Lyme properly (not 200 mg. of Doxy per day, that is incorrect).

That's my 2 cents for today! Yes, all this makes me angry and frustrated but I know one day this will all hit the fan and Lyme will be really big news.

To a positive future!
Denise

 
Old 09-09-2005, 06:24 PM   #6
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Re: anyone uncertain about lyme dx? just told by another dr chronic lyme is overdiagnosed

thank you all so much for your support. It really helps to hear other's experiences. It gives me the certainty I need to procede with treatment and to feel more confident in the lyme diagnosis.

I wish you all healthier days ahead!!

-Nancy

 
Old 09-10-2005, 07:09 AM   #7
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Re: anyone uncertain about lyme dx? just told by another dr chronic lyme is overdiagnosed

Sickandconfused,
like I told you before, I am right there with you. Its hard to believe any of them, they all want are bussiness. The llmd's are taking the rhumy's patients and vise versa. A lot of times I think none of them want us to get better because we are a constant source of money. I went through what you are for 2 years, questioning everything.

What made sence for me and helped me believe in my dx.

What is CFIDS? No one has a clue. They have found some markers here and there but they are the same markers found in FM(what is FM?) and chronic lyme. As far as they have gone with CFIDS is they think it is some sort of stealth virus or post viral syndrome. My question is why did I get this and why have I not spread it to friends or family. On the other hand what is chronic lyme? There are a lot of people who get lyme, classic lyme with EM rash and the works. These people are treated and get better and will be fine for a couple of years only to get sick again with same symptoms, but they test negitive with elisa and are given a CFIDS dx. This happens all the time. That is proff to what caused the illness. No one has proven anything to CFIDS yet. They have not found any virus or anything to prove that it exsist.

Why me? What makes me differant than everyone I know. I do not know anyone with a chronic illness. The only differance between me and everone I know is my love for critters. There are only two people on the planet that I know that do what I do. Jeff Corwin and Steve Irvin. I know alot of people who like the great outdoors but they always stay on the trail, if you know what I mean. I make my own trails, always have. If there is one tick in the SE swamps that is carrying lyme, I have met it. One other thing that made sence is the fact that I have been bitten by thousands of snakes(non-venomous). That is no big deal but when they bite you several times and then smear there po in the open wound, well that cant be good. I tested negitive to any parasites this may have caused.

Lyme makes sence, it has from the beginning. I now know this is what I have and even if the abx does not work I will still know in my heart this is what I have. I cant remember any bulls-eye rash but I do remember a day 15 years ago where I looked up lyme in my dads encyclopedia to see if that was what I had and was relieved to see that it only happened in the N.E. states. So why did I look up lyme, did I have a tick with a bulls eye around it, I cant remerber. I do remember that a year or so later I had swollen lymph nodes in groin and the problems escalated from that point on.

What really boggles me is how narrow minded Dr's are. The # of people that die acoss the world due to mosquitos and ticks every year is stagering. these animals are so very dangerous, how many lives do they have to ruin or take for science to realize we have a major problem. And for science to think that the deer tick is the only one to carry lyme is crazy.

Sickandconfused I am sure that eventually something will make sence to you. The more you read about CFIDS/FM and chronic lyme will help.

Derek

 
Old 09-10-2005, 07:54 AM   #8
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Re: anyone uncertain about lyme dx? just told by another dr chronic lyme is overdiagnosed

thanks alot derek.

I have read so much already about CFIDS (as i said have had it for 10 years) and now so much on lyme. BTW- before I had to stop working, I worked as a health educator and always was on top of health info and conducted workshops, had to sift though lots of articles, etc. Now, I have trouble totally comprehending health info due to EXTREME mental fog, so the more I read, the more confused I get. However, I am coming to the conclusion that CFIDS is not an entity within itself, it is a syndrome caused by numerous factors, and I think for me, it was lyme and the lyme has caused other things that have now resulted in a Chronic fatigue syndrome. I agree that there is so much more evidence about lyme than CFIDS. Many people doubt the existence of CFIDS (which i don't by the way), i just think it is caused by something and not a disease within itself. However, it is also hard to sift through all the info about chronic lyme, as alot of it is controversial and what you read differs greatly depending on the source, especially on how lyme disease should be treated.

So, eventually I will sort things out. for now, I am sticking witht he conclusion that I DO have lyme disease first and foremost. As for fibromyalgia, I do believe I have that secondary to the lyme and there is research that supports that fibro can result from lyme, lupus, MS, etc. My LLMD (one of the top) agrees with this too. One last thing, as I definitely did outdoor stuff as a child and an adult, including hiking and some activites upstate NY, my outdoor activities were nowhere like yours, so that could be another reason I am less confident. I really could not trace the lyme back to anything specific.

BTW- I am not sure I am allowed to post links to articles here, but I just came across an article that was a review of the accuracy of lyme information on the internet. The author reviewed at least 15-20 websites for accuracy on various aspects of lyme, i.e. diagnosis, treatment, chronic lyme, etc. Funny, most of the websites he deemed as "accurate" were all government ones, CDC, FDA, etc. Not surprisingly, he deemed Igenex.com to have the most "inaccurate" information on ALL aspects of lyme/chronic lyme. Perhaps the author was a bit biased, wouldn't ya say !!!!!!!!!!!

Thanks again for your input.

-Nancy

 
Old 09-10-2005, 09:00 AM   #9
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Re: anyone uncertain about lyme dx? just told by another dr chronic lyme is overdiagnosed

Quote:
Originally Posted by sickandconfused
thanks alot derek.

I have read so much already about CFIDS (as i said have had it for 10 years) and now so much on lyme. BTW- before I had to stop working, I worked as a health educator and always was on top of health info and conducted workshops, had to sift though lots of articles, etc. Now, I have trouble totally comprehending health info due to EXTREME mental fog, so the more I read, the more confused I get. However, I am coming to the conclusion that CFIDS is not an entity within itself, it is a syndrome caused by numerous factors, and I think for me, it was lyme and the lyme has caused other things that have now resulted in a Chronic fatigue syndrome. I agree that there is so much more evidence about lyme than CFIDS. Many people doubt the existence of CFIDS (which i don't by the way), i just think it is caused by something and not a disease within itself. However, it is also hard to sift through all the info about chronic lyme, as alot of it is controversial and what you read differs greatly depending on the source, especially on how lyme disease should be treated.

So, eventually I will sort things out. for now, I am sticking witht he conclusion that I DO have lyme disease first and foremost. As for fibromyalgia, I do believe I have that secondary to the lyme and there is research that supports that fibro can result from lyme, lupus, MS, etc. My LLMD (one of the top) agrees with this too. One last thing, as I definitely did outdoor stuff as a child and an adult, including hiking and some activites upstate NY, my outdoor activities were nowhere like yours, so that could be another reason I am less confident. I really could not trace the lyme back to anything specific.

BTW- I am not sure I am allowed to post links to articles here, but I just came across an article that was a review of the accuracy of lyme information on the internet. The author reviewed at least 15-20 websites for accuracy on various aspects of lyme, i.e. diagnosis, treatment, chronic lyme, etc. Funny, most of the websites he deemed as "accurate" were all government ones, CDC, FDA, etc. Not surprisingly, he deemed Igenex.com to have the most "inaccurate" information on ALL aspects of lyme/chronic lyme. Perhaps the author was a bit biased, wouldn't ya say !!!!!!!!!!!

Thanks again for your input.

-Nancy
Nancy I know you will sort it out. I guess the chronic lyme thing is a little hard for most Dr's to swallow. At least you got a poitive for lyme. I only got a positive for babesia.

As far as my habits are concerned, I live in SC. The rate of lyme in SC is relativly low, NY on the other hand is very high.

Like you I honestly believe in CFIDS and FM and I relly wish they could find a marker that would set it apart from chronic lyme. I am on an IV right know and will stop after 6 months if I do not have any positive results. However I still feel that what I got came from a tick, chigger, fly or mosquito.

 
Old 09-12-2005, 05:52 AM   #10
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Re: anyone uncertain about lyme dx? just told by another dr chronic lyme is overdiagnosed

I would like to add to this.

Number one if I listened to the book trained doctor idiots, I'd be dead today. They dx. Me with Parkinsonís, MS, Aids, Spinal Meningitis, and so many other things.

The only dx. that was right was the Lyme dx. Which over 30-years maybe a hundred doctors could not dx.

Chronic Lyme is under dx. Not over dx. And for your friend, please let him know until he has been educated through life not books than he can have a voice about Lyme, other wise like many others he needs to keep his book head brain to himself.

People like this are destroying our chances of getting the real word out about Lyme.

I have been getting better now, on long term antibiotics - even childhood problems such as arthritise have have diminished by 80%.

Good luck to you!

 
Old 09-12-2005, 05:56 AM   #11
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Re: anyone uncertain about lyme dx? just told by another dr chronic lyme is overdiagnosed

Ekim...

I totally agree with you!!!!! I am so glad you are getting better!! ;-)

-Nancy

 
Old 09-12-2005, 10:25 AM   #12
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Re: anyone uncertain about lyme dx? just told by another dr chronic lyme is overdiagnosed

ekim

right on man, right on.

jon

 
Old 09-12-2005, 10:31 AM   #13
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Re: anyone uncertain about lyme dx? just told by another dr chronic lyme is overdiagnosed

Ekim,

I couldn't have said it better!

Yes, Lyme is totally "under" diagnosed. Let the CFS and FM patients keep believing they have CFS, FM, etc. They are happy with that diagnosis, they buy it, and these kooky doctors are getting paid for treating these people with "syndromes". What a joke!

Denise

 
Old 09-12-2005, 10:46 AM   #14
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Re: anyone uncertain about lyme dx? just told by another dr chronic lyme is overdiagnosed

Denise..

I have to interject one thing.......

As I have said before..... I do believe that CFS/FM exists, but that they are caused my something else and that is why they are "syndromes", i.e. collections of symptoms occuring together. I do not however think that we can assume that everyone w/ CFIDS/FM has lyme. There are many underlying factors and I know many people with both syndromes that do not have lyme, even after extensive testing. Also, my LLMD believes in FM, but feels it is SECondary to the lyme, as FM happens to people w. lupus, MS, and other diseases as well.

So, I do agree that CFS is a sign of something else, but do not feel everyone w/ CFS/FM have lyme. I know 3 people that developed FM after a car accident and I had a client who developed FM after a traumatic brain injury.

As for these "cookY" drs, I think there is alot more to be said about them since they are at least willing to treat patients with controversial and not well understood illnesses. I went through years of my life with drs who would not even take any of my symptoms seriously or not even do any blood work out of the norm. That is not the case w/ most of the CFS/FM specialists.

Anyway, just had to add my two cents.

-Nancy

 
Old 09-12-2005, 11:36 AM   #15
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Re: anyone uncertain about lyme dx? just told by another dr chronic lyme is overdiagnosed

I never said (nor do I think anyone else has) that anyone with CFS/FM has Lyme, what I did say was that CFS, FM, etc., etc., are syndromes for another disease, it doesn't have to be Lyme Disease. There are plenty of diseases to go around in this world of ours.

As far as "kooky" doctors who only treat CFS patients, I have met plenty of them and once again, they love to take your money and keep telling you that you have CFS and patients buy this! LOL!

I was in a waiting room for 3 hours waiting to see a doctor who I thought was Lyme Literate (boy was I wrong!), he ended up to be only a CFS doctor. Well, I talked to the other patients and asked them if this doctor tested them for Lyme just to rule it out, their answers were "no". Why wasn't I surprised? I then asked them what their symptoms were, they told me, and I gave them lots of information. When I asked the CFS Doctor why he didn't test all his patients for Lyme, his answer was "Lyme doesn't exist". I really gave that doctor an education and asked him why he didn't attend the Lyme Conferences. He didn't have an answer for me.

So the majority of those "kooky" doctors are very happy because they are getting paid. Bottom line.

 
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