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has anyone had an llmd tell them that they DON'T have lyme?

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Posted 6/25/2009 7:10 PM (GMT 0)
it seems like LLMDs almost always diagnose people with lyme's, which is one of the reasons i am so skeptical of seeing one. there are soooo many disorders that can cause lyme-like symptoms. i just don't want to be told i have lyme's, which i feel confidently a doctor could clinically diagnose seeing as how i have over 50 symptoms and no diagnosis, and take hard-core antibiotics and supplements if something else is going. so i am curious if LLMDs ever tell patients they don't have lyme's and pursue other conditions?
Posted 6/25/2009 7:19 PM (GMT 0)
Interesting..I'm awaiting to see how this is answered. Great question
Posted 6/25/2009 8:00 PM (GMT 0)

gracetiger, I do not think a competent doctor would tell you that you have Lyme disease unless she/he really believed that you did.

Have you ruled out other diseases?  Have you had any Lyme and co-infection testing done?

 

Posted 6/25/2009 8:56 PM (GMT 0)
When I first started seeing my LLMD I asked him up front if he thought I had Lyme. After looking at my tests (not a positive WB) he said he believed so. He did take about 12 tubes of blood and did tons of other testing for virus's and other co-infections etc. I think about 20 or 25 different tests in all. Nothing showed up on any of them.

In my opinion these doctors are Lyme specialists and that is what they do..I honestly still am not sure I really do have Lyme after being in treatment for so long and still suffering symptoms. All of my specific symptoms could be related to other illnesses especially for me CFS. I know people don't believe in that but I do and since fatigue is my most debilitating problem (5 years) then I have to assume that my illness was caused by a virus and my body can't get well.

Lyme most of the time has to be diagnosed clinically so I think the LLMD's look at it in that way. I don't think I will ever know what ever happened to me when I became sick. I have had 3 WB done and none of them were even close to being positive so who knows.

So I think that if a LLMD didn't believe you had Lyme then they would not treat it. There are waiting lists of 3-4 months for people trying to get in and I just don't think they would give out massive amounts of abx if they didn't think so. But in my case even though he said he believed I did I am not so sure...

Posted 6/25/2009 10:45 PM (GMT 0)
Though this isn't really a direct answer there is a factor that causes a limit to the number of non-lyme patients who end up at LLMDs - since some or many LLMDs don't take insurance, people with other conditions don't usually end up seeing an LLMD; since most people know the first step in getting health care is to find a doctor on their health insurance network.
Posted 6/25/2009 10:57 PM (GMT 0)
Hi gracietiger,

Many people are scared of lyme disease which I can truly understand.  I had so many symptoms and every doctor I went to told me I didn't have lyme but gave me other "names" for what they "thought" I had.   Obviously, those doctors were not lyme literate.   I did my own research after I typed up a timeline of when I first started feeling sick and diagnosed myself.   It was almost fate that after 5 long years that I found a nurse who I asked to perform Dark Field Microscopy on me and sure enough, we watched my spirochetes on a monitor.  Then I found another doctor who sent my blood to IgeneX and sure enough, I was positive for lyme and ehrlichiosis.   

I was so relieved that I was finally diagnosed with lyme (yeah, I know that sounds crazy) but I said to myself "now that I know what I have I can start getting better"...  and I did become better after lots of trial and error protocols.  I had to find the protocol that worked for me.

I believe it's a combination of one's symptoms and blood tests (though blood tests are not always accurate).

The good news is that lyme is treatable!   I did "not" use long-term antibiotics and I have been in remission from chronic lyme for almost 4 years!

I hope that helps,

Denise

Posted 6/25/2009 11:21 PM (GMT 0)
When I first made my appt. with my LLMD, I called very upset(was crying) after being turned away by the ID specialist I had. I told her I was scared and I wasn't even sure what I had. Although all of my symptoms pointed to Lyme. And her response was... If it is NOT Lyme, Dr. ---- will find out what it is. So even at my first visit I was unsure if he would find something else.

He tested me for everything, did a physical and asked a million questions about my past medical history. My quest test was negative but he said just by looking at my labs he could tell it was Lyme. Been in treatment for 7 months and slowly improving and experiencing herx reactions like clockwork every 3 -4 weeks.

I do not think they would treat you for something they honestly think you didn't have. They put their license on the line to help us so I think they are very careful who the prescribe meds to. Another words, they are in it to help you. My doc is the most caring doctor in the world. I know he would never lie about something so serious. I don't think any of them would. Well I take that back, most non Lyme literate docs will lie and tell you you don't have it.

One more thing...our immune systems are all do different. I know someone who had Lyme untreated for 15 months like me and got better with 4 months of doxy. I am still symptomatic after 7 months of treatment. Yesterday I was biking and felt great...today I can't move my neck.ugh
Posted 6/26/2009 1:46 AM (GMT 0)
I think that once someone actually makes to a hard to find lyme doc they have exhausted other avenues and pretty much know they have lyme. Lyme docs prob dont see many patients actually get to their office who dont have it .
Posted 6/26/2009 2:28 AM (GMT 0)
Maybe if labs come back normal for everything else, and there was possible bb exposure then they treat. I think they(doc) learns a lot at the follow up appt to see how the patient reacts to antibiotics. I think that is part of the puzzle.
Posted 6/26/2009 2:34 AM (GMT 0)
I intend to be very clear w/ the LLMD I will see next week. I will tell him that altho I believe I have Lyme, I do not want to push or accept this diagnosis if there is a good chance I do not have Lyme. I will be asking him to help me figure out if I do have it or don't have it. I intend to gauge the response, see what he says about my positive 39, and try to reach a decision.

Killer, maybe this is something like the talk you should have w/ your Dr.

Oh, and an important PS: we do not know that LLMDs DO diagnose everyone w/ Lyme, because we aren't hearing from those who did not receive a positive diagnosis, right??

Posted 6/26/2009 3:36 AM (GMT 0)
bring someone to your appointment with you. You need that second pair of ears. My first appt he gave me SO much information that it was hard to process. My husband was with me so it was nice to get his perspective, too. Bring a notebook with questions. Easy to forget things it is a lot of info. Good luck!!! Sorry 4 all my typos above. I am on my phone and hard to see the letters. I am really not that stupid. Sounds that way, though.
Posted 6/26/2009 6:53 AM (GMT 0)
I don't believe a reputable llmd would give a diagnosis of Lyme unless other diseases were ruled out first. They need to be on their toes as it is and I don't think they would jeopardize their practice or reputation by being careless or reckless. The best llmds have very long wait lists and don't need to recruit patients, especially those who are not in need of their help.
Posted 6/26/2009 8:06 AM (GMT 0)
LLMD's - in my experience - are very caring doctors - o.k. I have only seen one - and heard other peoples experiences - none have been bad.

I am soooo grateful these docs. are out there - what would we do without them?

get made to feel 'crazy' - frowned upon - and left with high anxiety from 'no diagnosis' - as said above - I do not believe these docs. would just say 'yes - you have lyme' - I trust my LLMD. and I can't say that about any of the other docs./specialists I have consulted with.
Posted 6/26/2009 10:52 AM (GMT 0)
I agree. Very well said.
Posted 6/26/2009 12:16 PM (GMT 0)
I agree that the LLMD's are extremely busy and don't need to be seeing patients who probably don't have Lyme.

I believe I got in to see mine so quickly because my doctor that had been treating me here called and got me in within a few weeks.

Remember that these are Lyme specialists and at least in my case my doctor was not about to go looking for other causes. He told me that was up to my other doctors and he was there to check for problems that Lyme can cause like adrenal/thyroid or virus's and to look over my prior testing and see what they showed. He did recommend I see an endo for my hormonal problems but never tested them himself. I had been sick for 3 years when I finally saw an LLMD so I had tons of testing already completed.

My LLMD is very thorough and so are his PA's but they are there to treat Lyme and related co's and other Lyme problems. I do believe that they probably start almost everyone on a trial of abx to see what the response is. I know my sister did not have Lyme but was finally diagnosed with MS and she was originally given a 3 month course of abx with only a 41 + on IGG. She has now been on MS medications for 2 years and is doing great.

It is all a clinical diagnosis for these docs especially when so many tests don't show definate Lyme. So they are doing the best they can in terms of treatment.

Posted 6/26/2009 4:41 PM (GMT 0)
Graciestiger: Where you are questioning the LD diagnosis may I ask, have you been exposed to any mold or chemicals in or around your home or work that you are aware of ? Toxins from mold or toxic chemicals such as pesticides cause symptoms VERY similar to LD, even the stiff neck. If you cannot find a LLMD see if you can find a clinic that works with toxic exposures and start there. You could start by ruling that out. Just an idea. D
Posted 6/27/2009 12:16 AM (GMT 0)
Hi guys,
Thank you all so much for all of your responses. I don't have much time right now but wanted to thank you for taking time to respond.
I am not denying that lyme's docs do not adequately diagnose their patients, however, when there are so many symptoms of lyme's that coincide with other disorders, it is difficult for me to agree that a clinical diagnosis is always correct. I have also read before that lyme's docs can make a LOT of money, way more than their peers in private practice who deal with insurance and work many more hours, so I couldn't help but wonder if *some* lyme docs are just in it for the bank. However, I think the lyme docs who test for a lot of other conditions to rule them out sound very thorough.
I have no diagnosis, and a long list of symptoms. Doctors have diagnosed me in the past with POTS and CFS. However, I went and found myself a POTS specialist and a CFS specialist, both of whom ruled out those conditions. So doctors continue to search for a cause of my problems. I have to be honest, and don't intend to offend anyone here, but I am not one who agrees that an undiagnosed illness with symptoms like that of CFS, or fibro, or POTS must mean lyme's disease. I do think it is very possible for a lot of things to go wrong with the body, much of which doctors don't know or understand yet. I am very fearful that being as desperate for an answer as I am, for I went from a totally healthy 23 year old with no health problems at all, to having over 50 crushing symptoms, that I would be willing to hear and do anything. I can't imagine a reason a lyme doc wouldn't diagnose me with lyme's. I have most of the symptoms and have had everything ruled out. So naturally, lyme's is looking like the major possibility. But I don't want someone to just tell me that because he/she knows I'm desperate and see dollar signs in his/her eyes.
I do not like to take any medications or supplements, so for me to even trail doxy for three or so months would be difficult for me. I would do it if I, and my doctor, really believed that this was lyme's. Plus, all of that would be SO expensive for me. I was living in Africa prior to getting sick, had just graduated from college before I went to Africa, so I don't have savings or a cushion to support this. That's really my main concern, I think. The money. I just don't want to be led on because of my obvious desperation for an answer.
I hope this makes sense, and like I said, doesn't offend anyone by coming out wrong. I am not thinking clearly today (head and neck pressure is killing me) so I am sure my wording is not the best. I do believe in lyme's and lyme docs, but I don't think everyone with a chronic undiagnosed illness has lyme's. In fact, I think many don't. And I think I could be one of those people. I did'nt have a rash, I only had a positive 41 and an indeterminate 31, so I don't have a strong case to believe I have lyme's. I just don't want a doctor to clinically diagnose from my symptoms and empty my pockets.
Thanks again everyone!
Posted 6/27/2009 12:44 AM (GMT 0)
I understand your hesitations, and I share many of your concerns.

I do want to tell you, though, that Doxy is a very cheap drug, and what you *could* gain from a three or so month trial could potentially outweigh you doing nothing at all out of dislike for medication.

If I were you, I'd try it, and I hate taking things as well. It's do or die for me now, so I have to give it a shot.

Good luck...
Posted 6/27/2009 3:37 AM (GMT 0)
gracietiger,

didnt you say you was bit by a tick, and got sick right afterwards? if this is the case more then likely you have been exposed to lyme, and maybe even co-infections as well. if you can get treatment in the first few weeks is the only time you have a chance to totaly treat and cure lyme disease. so many have not had the right treatment and then go on to suffer for many yrs. i would hate to see anyone suffer needlessle. after all is said and done tho remeber advice is free, its your choice what you do with it.

wish you all the best
Posted 6/27/2009 7:44 PM (GMT 0)
hi rottendog -
i was bit by a tick in africa, where there are no reports of lyme's, though there are reports of tick relapsing fever, which i do not have. i was also living in a very tick endemic area upon my return from africa, when i became sick. but the onset of my symptoms seems very un-lyme like, which is why i am a bit dubious.
but at the end of the day, i think you are right. trialing some abx is probably worth so much more than continuing to live like this. i've just heard that the abx can take so long to have an effect, and a year's worth seems like a lot to me.
do you guys know if someone who tested negative for lyme (by igenex) and took three months or so of abx, should later test positive? would a llmd ever consider a person who always tests negative to still have lyme's or is at that point that they might suggest covering other bases?
Posted 6/27/2009 8:01 PM (GMT 0)
I tested negative through Igenex after 5 months of antibiotics. A few more bands came up positive & indeterminate. My LLMD still has no doubt it is Lyme. I have responded well to antibiotics but not there yet.
Posted 6/27/2009 8:42 PM (GMT 0)
I went on abx for 6 months and tested again. It was about the same..the dreaded 41+++ and a few IND.

To be honest I was happy to be clinically diagnosed with Lyme after 3 years of unknowns but since I have done a ton of research on Lyme and everything surrounding it..now I am not so sure of this diagnosis. Yes I have lots of symptoms, yes I live in an endemic area and was very much exposed.

But there are so many illnesses that overlap with my particular symptoms and I do feel that just because I have not shown anything at all in various testing doesn't mean I have Lyme. With the amount of abx I have been on with no resolution then I have serious doubts.

I feel that my body was attacked by something either viral or bacterial and did some damage. I don't think I will ever find out what it was since I too was a very healthy person before becoming sick. I don't have CFS as I don't fit the criteria but I have constant chronic fatigue from whatever infected me and nothing seems to help that.

Posted 6/27/2009 9:00 PM (GMT 0)
I think the longer you have it the harder it is to eradicate it. I went 15 months with basically no medication. Except 2 weeks of doxy before I got in with my doctor. I remembered the bulls eye rash about 8-9 months later. It all made sense. I did have some doubts especially with a couple clueless doctors input, but I know for a fact that I am dealing with CLD. You know the tests really stink so I wouldn't put much stock into a positive blood test. Just my 2 cents
Posted 6/27/2009 10:40 PM (GMT 0)
I really don't know what is wrong with me. I basically became sick overnight with flu symptoms and from there over the next few years countless random symptoms. I was originally diagnosed with CFS even though I didn't fit the criteria other than having debilitating chronic fatigue.

But the more I read over symptom lists I have many more on the CFS listing than the Lyme lists. I do also have adrenal insufficiency and hypothyroid but those are under control with medication.

I never had a rash or any tests close to positive. I have been doing alot of research on Lyme, CFS and similar illnesses and I don't fit into any of them. Some of this and some of that. Because of my chronic fatigue of almost 5 years I can't believe that Lyme is the culprit especially where I have been on well over 15 different abx including IV. It should have relieved the fatigue by now if caused by bacteria.

I am currently not on any abx even though I am suppose to be. My current doc wanted me on rifampin-mino-plaquenil but I just can't put anything more into my body.

I never had brain fog so I can't say what might help with that. I know my doc told me most of his patients have it but I said dealing with unrelenting fatigue is bad enough...although I have heard from other people that IV rocephin seems to help with brain fog.

So in answer finally...I am not sure I ever had Lyme.

 

Posted 6/28/2009 2:48 AM (GMT 0)
Ok, I have to chime in. My Western blot had 1 indeterminate band. I developed POTs suddenly-I was extremely healthy before. My doctor thought it was cardiac, even though I pulled a tick off. Second western blot showed a different indeterminate band. My POTS specialist told me my POTS was a "little different" than what he usually sees..and he is considered oe of the best. He did tell me that POTS is oftern caused by an infection...or can be from a parasite. Bingo..saw an LLMD and had a babesia titer out the roof..which, after the first test never showed up positive again.

So, lyme wasn't really my issue..babesia caused a lot more problems for me. Incidentally, after we sort of "beat it down" my POTS went away! Now, I have to beat down lyme, and bart. Funny thing..my latest babs titer..almost 3 years later is positive for IGGM (past infection).

You could also have Chagas..a parasite known to cause POTS..not found inthe US, but in Africa and Mexico.

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