Discussions By Condition: I cannot get a diagnosis.

Undiagnosed Lyme Disease

Posted In: I cannot get a diagnosis. 10 Replies
  • Posted By: Sinsaint
  • April 14, 2009
  • 11:32 PM

In July 2002 I got this really bad rash on my foot. I knew it was a bug bite because it was itchy but I never actually saw the bug that did it. I went to the doctor who said they hadn't seen anything like it before but it was probably just an infected mosquito bite. I was given a topical cream along with an antibiotic. After two days of vomiting I called the doctor and said I couldn't handle the antibiotic any more. The rash looked a little lighter so I was told to just continue with cream, stop the antibotics and call them if the rash didn't go away. It did and that was that. In August I got the flu. I was told they couldn't do anything for the flu unless I got dehydrated.

From that point on I've felt like a different person. Mostly tired, moody, some memory problems. I had went to the doctor three times after the bug bite but my symptoms were always attributed to post-partum depression. I had been pregnant the year before with my son who had been diagnosed with birth defects. It was a difficult pregnancy and stressful time after the birth so I guess it was pretty easy blaming all my problems on that. By June 2003 I was pregnant again and just decided to keep my mouth shut about my problems. My memory problems are getting worse, I'm constantly tired and I have some kind of balance problem. I've fallen down the stairs a few times. But it's not just stairs. Some of my falls include twisting my ankle, slipping three discs and the worst was a broken tailbone back in January.

About three years ago my son woke up with a tick in his arm. I freaked out and instantly called his doctor (different doctor than mine) because I knew ticks carry Lyme Disease. He told me to bring him in so he could check to make sure the tick was completely removed. When I got there we discussed Lyme Disease and he showed me a picture of the "bullseye" rash that I should watch for. As soon as I saw the picture I knew that was the rash I had. When I told him I had that rash years ago he told me not to worry about it because there is no way a person can have Lyme Disease for years without having severe problems at that point.

I didn't put much more thought into it up until two weeks ago when I went in for a routine PAP. I was asked about reactions to medications. I could remember the name of the medication I was on that made me violently ill but couldn't remember why I took it. It took a couple days for me to remember I took it for the bug bite. I started looking up Lyme Disease and I've found plenty of information about Lyme Disease going undiagnosed for years although I don't know how credible that information is. I'm going to see my doctor tomorrow and I'm trying to figure out how to explain to him that I think I have Lyme Disease without sounding like a complete idiot.

Also, I never took a picture of the rash but I have records from that visit that describe the rash as "a circular slightly raised erythematous rash on her left medial ankle that is in a diffuse pattern that covers approx 4 cm with satellite rash of slightly raised circular erythema surrounding." Should I take that with me to show him that I did have the rash?

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10 Replies:

  • Okay, I'll have to agree with your doctor on the point that Lyme disease cannot simply lay dormant in the body. The late stage symptoms of actual lyme disease are quite remarkable. It's very important to understand that a bullseye rash is evidence of a certain reaction by the body's immune system and can occur in circumstances other than Lyme disease. It is simply that the characteristic rash is one of the most salient features in many, but not all, persons who are bitten by ticks carrying Borrelia burgdorferi which causes the disease to manifest in humans. In other words, it's not the disease that causes the characteristic rash, but an immune reaction by the body that can vary greatly between persons. The rash need not be in a bullseye pattern for the body to react to infection by Borrelia as well. Care must be taken when attempting to attribute vague symptoms to a specific cause, particularly where Lyme disease is concerned. You will hear from a great number of people on this forum who believe that Lyme is more proliferent than the common cold and this is absolutely false. Most ticks do not carry Borrelia. The fad of late is to see a "Lyme Literate" doctor, who upon testing you will invariably produce a positive result by selecting certain laboratories to perform the diagnostic procedure. Lyme is not, contrary to popular belief, a pandemic but a multitude of people who have unexplained symptoms readily adopt a Lyme disease diagnosis because they wish for their symptoms to be related to a physical, rather than emotional, origin. The same holds true for Chronic Fatigue Syndrome, a contemporary diagnosis that mirrors the symptoms of clinical depression but represent a far more appealing diagnosis. It also provides for long-term medical insurance reimbursement, whereas mood disorders are extremely capitated. I certainly don't infer that it's the case where you're concerned, but simply to tell you what I see as a physician on a very regular basis and from a historical context as well. My point here is to certainly undergo testing if you wish, but after such a long period of time, it would be extremely unlikely for your symptoms to be associated with Lyme disease. Poor memory is often the consequence of distraction and poor processing. Both undivided attention and sequential processing are required for long-term memory formation. Many people who complain of poor memory often use the example that they can read pages of material and upon conclusion, cannot discuss or even recall much of what they read. This is not due to neurological degeneration of some type, but merely passive circumstances. It's necessary to fully attend to anything you wish to put to memory. Distracting thoughts can also interfere with memory formation as well. Memory degredation due to neurological degenerative disease is but a single clinical sign of other neurological sequelae that occurs. The same holds true for stumbling, apparent change in coordination, or falling. The key to remember is that with all neurological diseases, and other diseases with can affect the brain and nervous system, the symptoms are relevant by the company they keep, not the relevance of a singlular symptom or clinical sign. Best regards, J Cottle, MD
    JCottleMD 580 Replies Flag this Response
  • I have the same story as you almost. You do have Lyme. If you have the money, get a test from Igenex corporation. Get the Western Blot and the ELISA lyme panel. Have blood drawn, send it back to them, have the test results sent back to you. 2 bars on the electrophoresis test is a positive. Do not have an in house test done. Drs will always say it is negative. You have to do it yourself, then take your positive test to a Dr who will listen and treat you. by now you could hve developed neumorus alergies, chemical sensitivities, light sensitivity, severe headaches pain and more. Dont go to the dr with your symptoms, they will call you crazy and put you on antideprassants. Get the results yourself from igenex and then take that to a good Dr. its $ 300.
    Anonymous 42789 Replies Flag this Response
  • I'm sorry for being vague. I didn't mean to imply it layed dormant. Up until 2002 (25 at that time) I was a typical adult who's only health problems were migraines and surgery on my cervix when I was 18. I had already had a child in '97 with no PPD. I do understand that the second pregnancy could have put me at a greater risk for PPD but I didn't have any feelings of PPD, fatigue, memory or balance issues directly after his birth. My son was almost a year old when I got the bug bite, July 2002. I got the flu a few weeks later in August. In September was when my current symptoms began. Over the next year I went back three more times with progressively worse symptoms. My symptoms didn't then just go dormant. I just stopped asking for help. And aside from the bullseye rash I live in central PA in a county with one of the higher rates of reported Lyme Disease cases. Also, we had been on a fishing trip about a week prior to getting the rash. And while I never saw the tick on me I have had to pick ticks off of two of my children (both Deer ticks, I checked) so I know tick bites in my area are very common.
    Sinsaint 2 Replies Flag this Response
  • HiFrom the area you live in and the camping activities, I would say that your chances of contracting Lyme disease are higher than those average person .You do not mention one of the commoner secondary stage symptoms of Lyme which is aching and swollen joints, particularily knees. There is also a secondary rash that ofetn occurs on the limbs of affected individuals.The newer generation of doctors are becoming more knowledgable about Lyme disease as it is now taught about in medical schools whereas it was not in my day in the UK.You need a Western blot test as this is more accurate than an ELISA although the ELISA is often used as a primary screen. It will be worth it , hopefully for you to put your mind at rest.The mental symptoms you mention are more often associated with tertiary (third) stage of the disease which usually occurs after a longer time span than you mention. Dr Cottle is right about the primary rash you had not always being associated with Lyme but it is a sign of a tick bite.I am not a doctor but I can tell you that the western blot is an accurate test if done by a reputable laboratory.I wish you well.:cool:
    chrismia 159 Replies Flag this Response
  • I went to my doctor today. He sort of said the same as JCottle in that the rash I had doesn't mean I definately have Lyme Disease. However, he did say that just based on the description of the rash by the doctor, the fact that it was tick season and the area we live he would have ordered a Lyme Disease test. I didn't have to ask for the test. He said I should have the blood work done but he's not all that optimistic that it will show I have Lyme Disease after all this time, even if I do have it. He said he's going to do some research on Lyme Disease going untreated for years so that by the time my blood work gets back he'll have a better idea about what should be done next, even if it's just to rule out Lyme Disease completely. I don't have joint pain, swelling, etc. but my doctor said not everyone who has Lyme Disease has joint issues. My doctor seemed more concerned with the symptoms I did have like the "flu" that I had during a time when the flu isn't typically seen and the health problems I had up until the time I quit asking for help. He said that all my symptoms don't point to Lyme Disease to the exclusion of all other possibilities but that it's pretty high up on the list of things to check. Chrismia, how many years approximately would third stage be? My doctor seemed a little baffled at the idea that I could possibly have had Lyme Disease for seven years. He's not even sure what the treatment would be if I do have it.
    Sinsaint 2 Replies Flag this Response
  • From what Ive previously read, lyme tests are not often accurate. They can give both many false negatives.. and also at times false positives. From what you said.. I do think it's possible you could have lyme. It may be wise having some long term treatment for it to see if this fixes your issues.
    taniaaust1 2267 Replies Flag this Response
  • Another possibility is chronic fatigue syndrome... but if i was you I would make sure you dont have lyme. Dr J Cottle posted"Lyme is not, contrary to popular belief, a pandemic but a multitude of people who have unexplained symptoms readily adopt a Lyme disease diagnosis because they wish for their symptoms to be related to a physical, rather than emotional, origin. The same holds true for Chronic Fatigue Syndrome, a contemporary diagnosis that mirrors the symptoms of clinical depression but represent a far more appealing diagnosis. " It is true that ones with Major Depressive Disorder can be falsely diagnosed as having Chronic Fatigue Sydrome using the latest CDC Empirical CFS definition. In fact research shows that 38% of those with MDD were MISCLASSIFIED eg WRONGLY DIAGNOSED as having CFS by the CDCs latest... Reeves Empirical CFS definition. When the CDC started using this defination.. it raised the rate of CFS from only .2% of the community (which was in line with many other parts of the world who use stricter CFS definitions).. up to a whooping 2.5-2.6% in America who are so called said to have this illness. There is currently petitioning going on in the CFS/ME communities worldwide to get this definition changed to one which is more accurate. This CFS defination ISNT used in many other places of the world eg Australia, due to this issue and the Canadian CFS/ME definition is far more accurate. In fact some of the other CFS/ME diagnoses definations disclude those who have MDD. The Canadian clinical case defination specifies "primary psychiatric disorders" and also "lyme" disease" to be in exlusions in CFS/ME. "Exclude active disease processes that explain most of the major symptoms of fatigue, sleep disturbance, pain and cognitive dysfunction" and that section of the canadian consensus Document contains then a whole ist of different illnesses. These illnesses must be ruled out for causing the symptoms BEFORE a CFS/ME diagnoses can be given. The CDC needs to catch up with the rest of the world and stop mixing MDD up with CFS.
    taniaaust1 2267 Replies Flag this Response
  • HiLyme Borreliosis has three stages and they can be compared to the three stages of syphilis (both organisms are cork screw shaped and screw around your body and eventually into the brain)First is the early localised stage with the bullseye rash which varies in shape and size between patients. Geveral symptoms such as fever, muscle aches and headaches can occur at this stage which lasts three to four weeks. During the second stage patients can feel quite ill and may present with fatigue headache fever, malaise, arthragia and myalgia (may be mistaken for a bad case of the flu)15 to 20 % of untreated patients in the USA go on to develop neurological symptoms (often facial palsy). Severe encephalitis is occasionally observed in stage 2.Stage 3 occurs years after the initial infection. Sorry but my book (Manual of Clinical biology) does not say the number of years but Amy Tan the author ot Saving Fish from Drowning and the Kitchen God has written a wonderful piece about her experiences of undiagnosed Lyme disease. She had terrible memory problems and some hallucinations. In her case I think she was undiagnosed for about ten years. The organism once in the brain, is shielded by the blood brain barrier from a lot of antibiotics.Your doc is doing the right thing in getting you tested and learning up about this nasty critter.:cool:
    chrismia 159 Replies Flag this Response
  • Hi, Just saw you posting (it might be very old) but I have to tell you I had exactly the same thing happen to me. Had a bug bite on my heel, doctor told me its nothing and 2 years after I had every single symptom of late stage Lyme: I started having severe migraines, heart palpitations, shortness of breath, weakness in my extremities, numbness in my arms and legs, pins and needles feelings all over my body, fever, loss of balance, I fainted, cannot fall asleep, aggravation, cannot walk one set of stairs without gasping for air, pain in my knees…etc. Doctors did diagnose me with Lyme and gave me only 21 days of antibiotics (which is not enough when infected unknowingly for 2-3 years) which made me feel better, but only for couple of months. After couple of months, the same symptoms but more sever were coming back. I had re-occurrence of Lyme 4 times due to short and inappropriate therapy. Saw ID specialist, (Dr. Hirsh NJ don’t go there ever), who told me I don’t have active Lyme since my Western blot does not show 5 IgG bands positive but rather 2….stupidity, stupidity, stupidity!!! She totally neglected my clinical picture and dismissed me telling me she is frustrated with my coming back???????? What a doctor. I had to find GP who knows more than her to give me therapy for 2.5 months and now all my symptoms are gone. Figure that! My advise to you is to seek “Lyme literate” doctor…don’t go to ID specialist, they just follow blindly CDC guidance without looking at the whole picture. In any case I would like to find the outcome of your problems. Did you have Lyme and how do you feel now?:confused: In July 2002 I got this really bad rash on my foot. I knew it was a bug bite because it was itchy but I never actually saw the bug that did it. I went to the doctor who said they hadn't seen anything like it before but it was probably just an infected mosquito bite. I was given a topical cream along with an antibiotic. After two days of vomiting I called the doctor and said I couldn't handle the antibiotic any more. The rash looked a little lighter so I was told to just continue with cream, stop the antibotics and call them if the rash didn't go away. It did and that was that. In August I got the flu. I was told they couldn't do anything for the flu unless I got dehydrated. From that point on I've felt like a different person. Mostly tired, moody, some memory problems. I had went to the doctor three times after the bug bite but my symptoms were always attributed to post-partum depression. I had been pregnant the year before with my son who had been diagnosed with birth defects. It was a difficult pregnancy and stressful time after the birth so I guess it was pretty easy blaming all my problems on that. By June 2003 I was pregnant again and just decided to keep my mouth shut about my problems. My memory problems are getting worse, I'm constantly tired and I have some kind of balance problem. I've fallen down the stairs a few times. But it's not just stairs. Some of my falls include twisting my ankle, slipping three discs and the worst was a broken tailbone back in January. About three years ago my son woke up with a tick in his arm. I freaked out and instantly called his doctor (different doctor than mine) because I knew ticks carry Lyme Disease. He told me to bring him in so he could check to make sure the tick was completely removed. When I got there we discussed Lyme Disease and he showed me a picture of the "bullseye" rash that I should watch for. As soon as I saw the picture I knew that was the rash I had. When I told him I had that rash years ago he told me not to worry about it because there is no way a person can have Lyme Disease for years without having severe problems at that point. I didn't put much more thought into it up until two weeks ago when I went in for a routine PAP. I was asked about reactions to medications. I could remember the name of the medication I was on that made me violently ill but couldn't remember why I took it. It took a couple days for me to remember I took it for the bug bite. I started looking up Lyme Disease and I've found plenty of information about Lyme Disease going undiagnosed for years although I don't know how credible that information is. I'm going to see my doctor tomorrow and I'm trying to figure out how to explain to him that I think I have Lyme Disease without sounding like a complete idiot. Also, I never took a picture of the rash but I have records from that visit that describe the rash as "a circular slightly raised erythematous rash on her left medial ankle that is in a diffuse pattern that covers approx 4 cm with satellite rash of slightly raised circular erythema surrounding." Should I take that with me to show him that I did have the rash?
    mikki11978 3 Replies
    • October 23, 2009
    • 08:16 PM
    • 0
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  • I have no idea how old this post is, I didn't even bother to look.I'm 13 years old, and I am lyme disease positive. My mom is also.I agree that you should get an IGENEX test. I go to Dr. Charles Crist in Missouri. He's world known and a specialist in lyme disease. I know this post can't be the most helpful, since i'm 13 and definitely not a doctor, but in case any tests you take (or anyone takes) that come up with a positive for igenex, borreliosis, etc, that's who to go to. He's saw millions of patients. Only problem is he's extremely busy treating people. My last appointment a few months ago was at 6am. lolRegardless, good luck in getting a diagnosis and may your recovery be good. ^-^
    Anonymous 42789 Replies
    • November 22, 2009
    • 10:07 AM
    • 0
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