MRI ruled out MS. All testing inc. lyme test says I'm fine. I believe it's lyme. My doctor wants me to believe my symptoms are caused by stress. This is not stress and it's getting worse! Two years ago when my husband and I were house sitting he got sick and was diagnosed and treated for lyme. Ever since around that time I have had a series of weird symptoms. Tingling in arms and hands that has since turned to pain and not eased up, now there is pain that travels from place to place including my jaw and neck, supposed rosacea that burns on my face, head aches, ringing popping and pain in my ears, supposed reynoids that started in fingers and toes but now includes hands and feet, eye floaters and not often but halos and explosion of floaters after rubbing my eye, fogginess and confusion inc. not being able to find the right words or saying wrong words, short term memory loss (this is the one that is putting me right over the edge!)
As I feel I must tell my doctor what to do (instead of the other way around) I was hoping someone could tell me what else if not lyme they think I should be considering. No luck finding LLMD yet and doc that treats lyme can't see me until May. Going back to my neurologist this week and want to be prepared. I just figured out this could be lyme about a week ago, so this is all new to me.Thank you so much!
Good for you for pressing ahead on this. Before I forget to say it, be sure you get your own personal copies of all your test results -- including the MRI and everything else that is done. It may save you from being retested, since docs don't believe what patients tell them about what a prior test said, and waiting till later to get copies from a doc's office is often problematic in my experience ... the file clerks have that 'it's time for my coffee break' look in their eyes when they are supposed to go copy your old test results if you ask for them later, so get a full copy AT the appointment. If you don't have them now, start calling. (I know, it's not like you've got a lot of extra time and energy.)
"All testing inc. lyme test says I'm fine." -- You may already know that the tests are very inaccurate, esp the tests that most docs use. Lyme specialists use additional tests, and they will also consider testing for other diseases that the same ticks carry. Seeing a Lyme specialist (LLMD, patient slang for Lyme-Literate MD, meaning a doc who thinks progressively about Lyme) is important. I hope the doc you are waiting to see is in that camp. Take copies of your tests already done to your appointment with the new doc -- as imperfect as the tests are, they are useful to a doc who knows how to read them. What looks negative to a nonLLMD may speak to an LLMD.
"My doctor wants me to believe my symptoms are caused by stress." -- You're not the first to hear this.
"This is not stress and it's getting worse!" -- I hear you.
Your symptoms are all consistent with what I personally experienced and what I have read about Lyme -- but no one here is medically trained, just battle-hardened.
"As I feel I must tell my doctor what to do (instead of the other way around) I was hoping someone could tell me what else if not lyme they think I should be considering." -- I'd focus on Lyme till you have some clearer answers.
"No luck finding LLMD yet and doc that treats lyme can't see me until May." -- So is the 'doc that treats Lyme' (and treated your husband, I assume?) not an LLMD-type doc? An LLMD can be any specialty, it's a mindset. Often the specialists you would think could help, like infectious disease docs, are the most blind to Lyme.
Oh, and call the Lyme doc's office and ask to be put on the cancellation list so they will call you if an earlier slot opens up.
"Going back to my neurologist this week and want to be prepared." -- Be prepared to be blown off ... neurologists are very often unLLMDs -- the official position of their specialty is that Lyme is hard to get and easy to cure with a couple weeks of antibiotics, but due to peculiar characteristics of Lyme, it often doesn't work that way unless it is a VERY recent infection. I saw a couple of neuros when I was very very ill with Lyme and babesiosis (like malaria); they had no diagnosis, and one thought I was flat-out faking.
So ... maybe you'll be lucky and your neuro has an open mind, but be braced for him not to be. Sorry to be Debby Downer here, but none of us has any experience in dealing with a split in the medical community like this one -- until we hit Lyme and its little cousins.
Best wishes -- let us know how you do, okay? We've all been where you are.
Thank you so much for your comments. The doc I am waiting to see in May treats lyme disease and RA out of Yale. I trust Yale but when I made the appointment I asked the receptionist if this doc is a LLMD and she said "what's that" so I will keep looking. I did ask for a ref. from ILADs so I'm checking my email next. I am in CT and the most ironic part of this is that my GP who had me thinking I was nuts is located in LYME! LOL can you believe it? We find ticks here all the time. My husband got very sick right away and was treated in the ER after his GP sent him home to sleep off the flu. This is just mind bogeling to me. I will get all my tests together, that is a great thought. It become clear as soon as I discovered on my own that lyme might be the culprit that I would have to be my advocate so I've already started a file, which needs to be done since I can't think straight half the time. I'm glad I found this forum. Thank you so much! Have you been treated with success?
This neuro is pretty good thus far. He has listened to me and really seems to care. He wanted to do more testing after MRI for MS came back clean but both he and the gp thought it could be stress so I told them I would try meds and see what happens. Symtoms have gotten worse, so we'll see what he says. I'll let you know. Thanks again!!!
I'm not surprised the nurse you spoke with didn't know what an LLMD is -- it's not an official title, and I don't know of any docs who call themselves LLMDs -- it's just a tag we patients use to identify a broadminded doc.
The two docs who first 'discovered' and studied Lyme were Gary Wormser and Alan Steere. These two docs are still very active in defending their views on Lyme as hard to get, easy to cure. Just for yuks, I just looked up Steere's wikipedia entry (or in his case, his public relations release):
"Allen C. Steere is a professor of rheumatology at Harvard University and previously at Yale University. Steere is credited with discovering and naming Lyme disease, and he published almost 200 scholarly articles on Lyme disease between 1977 and 2007. At a ceremony in Hartford, Connecticut in 1998, Governor John G. Rowland declared September 24 to be 'Allen C. Steere Day.'...
"By the mid-1990s, ... Steere was concerned that many people with no evidence of past or present Lyme disease receiving antibiotic treatments, especially treatments beyond the recommended four week treatment guideline protocol, 'were being done more harm than good'.
"Writing in the Journal of the American Medical Association (JAMA) in 1993, Steere and colleagues stated that Lyme disease had become 'overdiagnosed' and overtreated. This statement became a rallying point for what advocacy groups call the Lyme disease controversy. In the face of some elements of mainstream medical opinion, some doctors and patient advocacy groups [this means ILADS and LLMDs] ***claim*** that Lyme disease can develop into a chronic disease requiring high doses of antibiotics over long periods of time. However aside from the issue of terminology, some mainstream medical opinion goes as far as to assert that some Lyme disease cases can become "difficult to treat" if not quickly diagnosed."
"Although the term 'chronic Lyme' was once used by Steere and others to define persistent complications following acute Lyme disease, various Lyme advocacy organizations and a ***dissident*** group of doctors called the International Lyme and Associated Diseases Society (ILADS) have redefined the term to describe a wide range of symptoms, mostly in patients who have no evidence of Lyme disease...."
[[ note from me: Gotta love that "MOSTLY IN PATIENTS WHO HAVE NO EVIDENCE OF LYME DISEASE". Yeah, except for being terribly ill and having positive blood tests. ]]
"Steere and his colleagues averred that ***even patients with a positive serology for Borrelia infection and with symptoms*** resembling those of CFS or fibromyalgia, would not be helped by further antibiotics.
[[ note from me: 'WOULD NOT BE HELPED BY FURTHER ANTIBIOTICS' -- yeah, let 'em rot if the symptoms and tests disagree with my theories. And here comes the pity party Steere is throwing for himself: ]]
"Steere's prominence, and his support of the medical view that patients with "chronic Lyme disease" often have no actual evidence of Lyme disease and are not helped by long courses of antibiotics, led to him being targeted, harassed, and threatened with death by patients and advocacy groups angered by his refusal to validate their belief that they suffer from chronic Lyme disease."
So, what sent me off to wiki for his bio was to confirm my memory that Steere, one of the two greatest Lyme deniers, did much of his Lyme research at Yale. So, the doc you see at Yale may or may not be a Steere fan, but just have your guard up and (if I were you) I wouldn't ask him about being an LLMD. When one of my nonLyme docs learned from me that I was being treated by an LLMD (who is well known hereabouts), he took two steps back, stuck his hands in his white coat pockets, and literally sneered.
I hope you are fortunate at Yale, and it's certainly worth doing, but be aware that you stand a good chance of seeing a nonbeliever. But I'd go, just for a cross check on what else it could be. Let us know how it goes, okay?
I keep a big three ring binder with all my past tests in it ... docs roll their eyes when they see it, but I don't refer to it unless there is a past test from another doc that bears on whatever we are talking about. Then the doc relaxes a bit ... but it does put the docs off generally. I started carrying the binder in a tote so the doc couldn't see it right off. Heh.
After 20 docs, one kindly doc, the third endocrinologist I had seen, ran a Lyme test, which came back somewhat positive (which may not happen when the infection is not very recent, because it measures the immune system reaction to the infection, and after a reasonably short time, the immune system figures the infection is gone and stops making the antibodies that the test measures. It's why LLMDs will sometimes give a short course of antibiotics and then (re)test, because that can 'stir up' the immune system to react to the infection and thus produce a positive result.
Thanks for asking, yes, I was treated for about 18 months by an LLMD using oral antibiotics. There is still a big black hole in my life from when I was so sick, but I am back to the old me now. YAY!!! It was definitely worth the hassle of treatment for babesiosis and Lyme. I was nonfunctional while ill.
You comment: "This neuro is pretty good thus far. He has listened to me and really seems to care. He wanted to do more testing after MRI for MS came back clean but both he and the gp thought it could be stress so I told them I would try meds and see what happens."
Interesting, isn't it, that they stopped short of considering whether you have a physical ailment other than MS, and went straight to psychological issues? See what they explore and what they think, but above all don't get downhearted if they tell you it's all in your head or that nothing is wrong. It's good to go through ruling out other things, and when nothing is left but psych issues and Lyme, then pursue Lyme till it's ruled out or treated ***by an LLMD***.
===>>> In your situation, I personally would NOT tell the Yale neuro and GP that I was going to see a Lyme specialist (again, the term "LLMD" is meaningless to them, and is not official in any way, and to those not 'believing' in Lyme, marks you as a wacko). Just say thank you and take your copies of tests and then decide what to do next. Some mainstream docs like the Yalies may refuse to see you again if they know you are seeing an LLMD, because they may consider it potential malpractice to tolerate a patient who is also seeing a doc who gives improper treatment (in the eyes of mainstream medicine) -- and you may need these guys again in the future. Keeping options open.....
Wow! I am so glad to hear you are better. What type of antibiotics are we talking about? Just one dose?
My neuro in local and I'll let you know what he says. The Yale doctor is someone I found that says she treats lyme disease and the doc I am hoping is a LLMD or close to one, she says right on the web she treats lyme.
The google search appears to give LLMd's but I'm still having trouble finding one, most sights are advertisements. The referal I had emailed to me was for a LLMD Opthamologist, which I will call tomorrow, and a cardiologist. Also a optomitrist. What a joke.
My dad is a gp in another state and maybe he can help me? I'm trying to at least get diagnosed. Would someone get treated based on the clinical diagnosis alone?
Sorry for all the questions. You have been wonderful! Thank you!
First I was on Mepron and Zithromax for Babesiosis -- that lasted 4 months.
Then I was on Biaxin and Omnicef for Lyme -- that lasted 5 months, then was switched to Flagyl and Zithromax for 4 more months.
Total: 13 months.
Depending on what co-infections you have and how you respond, it can take longer.
Will be interested to hear what your Yale doc says and what the approach is. NonLLMDs believe they are treating appropriately and that the LLMDs are the ones who are doing the wrong thing. The Yalie is worth trying -- will be very interested to hear her recommendations if you want to share them here.
It seems logical that a Lyme specialist should be an infectious disease (ID) doc, but that specialty in particular leans away from the LLMD approach. That is a generality, tho, and what counts is what the individual doc does. Because of the restrictions sometimes put in place by state and local medical boards in different places, some docs are very very quiet about treating Lyme in a broadminded way. There are various groups that give referrals, and you just have to have your antennae up to back away from the crackpots. NonLLMDs think LLMDs are ALL crackpots, but the trick is to find an LLMD who is a good doc and just views Lyme in a slightly different way than nonLLMDs do.
I'm with you, I'm not big on docs who advertise a lot, and I esp. am suspicious of docs who want you to buy a lot of vitamins from THEM. If they can tell me why their vitamins are so much better than the kind I get from good vitamin companies, I would listen, but most docs don't push vitamins at appointments. My LLMD didn't care about vitamins at all, as many docs don't, but I found it necessary and still take quite a selection every day.
About the LLMD ophthalmologist, s/he would (I'm guessing) focus on Lyme effects on the eyes, because Lyme can have a big impact on vision. My eye doc takes it very seriously, but he only deals with the eye aspects, if any, not the overall treatment approach etc.
There is no such thing as a Lyme specialist, because that's not a recognized medical 'specialty'. There are neurologists for the nervous system, gastroenterologists for the digestive system, etc., and that's how all doc specialize. A doc can then be interested in a particular disease area (such as Lyme) and build a practice in that direction, but there is no specialty in Lyme as such. My LLMD is an immunologist by training. Others are GPs, internists, whatever. I wouldn't think an ophthalmologist would oversee your entire Lyme treatment program, but maybe they would. I just don't think so.
It's great news that you have a doc in the family. If your father is willing and interested, he could be a great resource. If he tells you the IDSA is right (those are the 'Lyme is hard to catch, easy to cure' docs) and ILADS docs are wrong, then you might not be able to bridge the difference. I have an old, old friend who is an immunologist (a different person from my Lyme doc) and when I contacted him to try to get some perspective on the whole Lyme treatment mess, he took the IDSA hard line and advised me not to see anyone in the LLMD category. So ... if your father takes that approach, it might not help you much when you go to an LLMD, but I certainly understand why he might take that position. LLMD = quack in the minds of most docs.
"Would someone get treated based on the clinical diagnosis alone?" Maybe, but in each case I've heard of here, the docs come up with some evidence of infection, because it is obtainable. The standard tests, Western blot and ELISA, are done in a pair, but are not all that accurate -- however they are still usually done. I had been infected over a year, and my W.blot/ELISA tests came back positive, tho they could easily have not done so, given how long I had been infected.
LLMDs often use those two test, plus an additional test, often a PCR test from IGeneX labs in California. The PCR test looks for actual Lyme bacteria DNA in your blood, instead of the W.blot/ELISA tests, which rely on measuring your immune system's reaction to the infection, which is not terribly reliable, because (so I read) the immune system stops reacting not long after infection, and if you are tested months into the illness, the W.blot/ELISA tests may well be negative. There are other scientific reasons these tests aren't great, too. IGeneX has a website with useful data on their tests, but nonLLMDs often sneer at IGeneX testing, for reasons not clear to me.
The ILADS website is where I would send your father. He may or may not react well to what is there, but you don't know till you try.
Another word about finding an LLMD -- googling will often find you other websites similar to this one that may have posts recommending docs. Try the ILADS referral email above, and also look at their website for docs mentioned there who are in your area. It takes a bit of scouting, but it's worth it.
Thank you so much! I really appreciate your help and your knowledge that you were willing to take the time to share. Of course having lived with docs telling me I'm crazy has made me a little crazy, if you know what I mean :) so finding someone to validate me has been a gift. I'll keep you posted on what happens.
Warning about "Lyme" doctors at Yale!! Yale is a major source of chronic Lyme denial. They have sent out information to doctors around the country calling themselves "The Dream Team" for Lyme and insisting that antibiotics be withheld from suspected cases unless there is a rash and the patients is CDC positive on the blood tests. Don't be surprised if this doctor insists you don't have Lyme. (See Pamela Weintraub's book "Cure Unknown")
Even if a doctor there does agree to treat you, it will be highly unlikely you'll get treated for more than a month. That might be helpful to get the process started, but you'll have to go elsewhere for longer term treatment that might actually cure you.
Check out the ILADS website. They have a whole section on treatment guidelines
I saw my neuro today. What a joke. He said I prob did not have lyme because I did not have a rash and wanted me to have carpel tunnel testing at about $1000 for the pain in my hand and arm, but what about the other places I have pain? Anyway, my white blood cell count was low and cholestrol high. I have never had high cholesterol. No diet changes. I read these may be indicators. I also remebered my liver enzymes although normal now were high in the past. Question now is do I keep an appointment I made with the LLMD opthamologist? My eyes are bad, but it's $650 out of pocket, he does not accept insurance and I still need a regular LLMD to treat me. Will antibiotic treatment fix my eyes, so skip the opthamologist?
It IS possible that the LLMD ophthalmologist treats all aspects of Lyme (tho offhand I'd guess not), so you might want to call the office and say you need to see an LLMD who will treat all aspects and not just eyes, and would they please tell you whether the ophth addresses the whole body or just eyes. I can't imagine they would mislead you.
Personally, I'd find an overall LLMD and then if s/he thinks you should also see an ophthalmologist, deal with it then -- but an inquiry to the ophth is probably worth the phone call, since you're already on their schedule.
Lyme can definitely cause vision issues. It has for me. The right eye on my glasses is not right, but I'm going to wait for a cure to see how my vision settles out before I pay hundreds of dollars for a new exam and lenses. If you can't see well enough to drive, that's definitely a concern. I just have two different cheap reading glasses, one for reading andone for computer work. They're a lot cheaper than Rx glasses.
Saw the LLMD today and started treatment this afternoon. He seemed to think 30 days would "cure" me. Maybe I'm being to hopeful but I'm going with it for now. I did have one band on the western blot show up. The GP had her assistant call me and say all my tests were negative. I insisted on having them fax me the all my blood work. I had to pester them daily for four days until I got it. On the western blot (which I demanded they do) she had written negative and underlined it three times. I have been telling her my sympotms for two years. On my last visit I told her I stutter sometimes and I have alot of floaters in my eyes and I just can't think clearly. Even though she aggred stress does not cause floaters she still insisted all my problems were "stress" and offered no explanation for the floaters. I guess I am going off on this rant because I feel hurt. I just can't wrap my head around this yet. But, I also feel lucky as I said in my other post. Thank you for your help. It has meant the world to me.
I know someone who went to Yale with Lyme and had no luck at all. No LLMD's. You would think Yale would have it but no. He wound up going to someone else, I will find out the name for you if you would like.
Thank you. I ended realizing Yale would not help me through my ecperiences with ENT there and because of this site. I did find an LLMD in NY and he knew exactly what I was talking about. It felt so good to have someone validate you after hearing nothing but that I was stressed, had anxiety, basically I was crazy.
A thought that came to me.... my doctor has never specified how long it might take me to get well. A true LLMD knows that some patients are trickier than others, and gives antibiotics for 1-2 (some say "several") months AFTER all symptoms are completely gone. This is because the spirochetes are known to ball up into cysts to hide. They go dormant for a while, then come back out when the antibiotics are gone.
I don't know who you're seeing, but if a doctor is insisting on the first visit that you'll be "cured" in just 30 days, I would be cautious. If he wants you to stop the antibiotics in a month, insisting you're cured even though you don't quite feel normal, or if he tells you that your symptoms will slowly resolve over time, find a different one.
Some doctors have picked up on the "LLMD" terminology and describe themselves as one even if they have nothing to do with ILADS and don't necessarily follow the ILADS treatment recommendations. The primary thing to remember is that the ILADS philosophy is that every patient is different and needs to be treated as needed, and that antibiotics need to be used for an extended period of time in combination and in rotation until after all symptoms have resolved. (Of course there is an exception for permanent damage, but that needs to be confirmed first.)
All I can think is that he was trying to keep me hopeful. He is the ILADS doc so we know he knows what he's doing. He also did testing for co-infections. I'm supposed to go back in one month. Maybe I took what he said wrong. I'll have to ask my husband. Thank God I brought him along. It was just nice to have someone there to help you take notes and ask questions. Plus now I hope he understands a bit better why I have been so hard to live with.
No, I think I misunderstood your post about what your doc said. I missed the part about joking and "until you relapse", which is what happens to people who are told they're cured in 30 days. They always relapse.
Anyway, he seems like a terrific doc. I am glad you were able to get in to see him quickly!
I'd qualify the statement that people with Lyme 'always relapse' after 30 days of treatment.
If the infection is caught right away, like immediately after the tick is found attached, then 30 days of antibiotics *may* be enough. However, it is (from what I read) not often that the ticks are found while attached and that people get to a knowledgeable doc quickly enough.
What I had in mind was people like me who have had it for years. After 30 days of treatment, I could barely be up and around for 1/2 hour before I'd have to sit down again and rest for 4 hours. From what it sounds like, most people are cured in 30 days early in the disease. Thats why it's so sad to me that doctors and patients don't recognize it, as it's so much worse when it gets to the later stages.
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