Chronic Lyme Disease??

pbthompson

Mouseketeer
Joined
Feb 28, 2009
Messages
163
Hello,
My brother believes he has chronic lyme disease. He recently tested positive, but is so depressed because he is very sick and doesn't think he will recover. He is having a hard time getting treated, some doctors have even told him they don't believe in lyme disease...really? :confused3

Have any of you had it and recovered or do you know of anyone that did? What did they do?
 
Working in peds, I have seen numerous children diagnosed with it. Diagnosed and treated early, you can get rid of it. My docs usually prescribe Amoxicillin for 14 days.

I know a lady who was not diagnosed early, and she has periods where it really affects her. A lot of joint pain. I haven't seen her lately to find out if anything has changed, but she didn't expect it to. The symptoms just rear their ugly head every now and then.
 
I am taking him to another appointment on Monday. I feel so bad for him. He is in constant pain. I hope they can help. We have done alot of research on the net and it ranges from no big deal to death (same with just about anything). He is convinced he will die from this. His main concern is his breathing. He has many, many other symptoms too many to list.

Thanks for your reply.
 
I have known a few people with lyme disease. Some have had very serious cases. They have all recovered (though it can take a very long time) and are living active lives again. I have a friend right now who is older and trying to combat it. From what I have seen, feeling depressed or overwhelmed is not uncommon. It is a tough battle if it has advanced in your body. My friend right now has chosen to not look at the information on the internet because so much of it is doom and gloom, it was adding fear.
 

I am taking him to another appointment on Monday. I feel so bad for him. He is in constant pain. I hope they can help. We have done alot of research on the net and it ranges from no big deal to death (same with just about anything). He is convinced he will die from this. His main concern is his breathing. He has many, many other symptoms too many to list.

Thanks for your reply.

What type of doc are you taking your friend to? How long has he had symptoms? If he is seeing a primary care doctor, maybe discuss with this doc about going to an infectious disease doctor. That would be my next step.
 
DH had it back in the mid 80's. He was VERY sick with it for about 6 months, but did slowly recuperate. He says he never did get back to feeling "normal" completely though.
We used to live in a high risk area, so I know many people who have had it. Don't know if any studies have been done about this, but one weird thing that I've noticed is that many of my friends who have had Lyme's disease years ago are all now diabetic, so I wonder if it does some damage to the pancreas.
 
DH's 41 year old brother passed away in March due to complications from Lyme disease. He was diagnosed about 4 years ago and had alot of joint pain, but nothing more than that. He went to the hospital Dec 29 with abdominal pain and was told he was in end stage liver failure. He died 65 days later. He was a drinker, but not to the extent that it would kill him. They said his liver shouldn't have looked the way it did at his age no matter how much he drank. They believe that the Lyme disease was beating up his body and made him suseptible to other illness. I am certainly not a medical professional, just telling you what was explained to us.

I think he will just have to be much more diligent about his health, which obviously my BIL was not. Best wishes.
 
My son had lyme, and every once in awhile still gets symptoms, even though he was given antibiotics after the VERY LONG 4 months of the doctors not knowing what he had (OK so 4 months doesn't seem like a long time, but picture a child screaming at night and holding his legs, and crying at mini golf because all of a sudden he can't walk... it felt long to me) he is getting joint pain now. Which leads to the pedi sending me to a juvenille rheumatoid arhtritis doctor (the pedi says chronic lyme doesn't exist :confused3 ), and the JRA doctor sending me right back and saying it is chronic lyme.

And to add a kicker the symptoms come and go so by the time he gets to an appointment he doesn't always have the symptoms anymore.


Sorry to threadjack....

I have heard of doctors not believing in chronic lyme, but I have never heard of a doctor not believing in lyme disease. And as for testing positive.. there is no clear cut lyme test. There are indicators, but no black and white lyme test. My best friend was diagnosed with lyme because of all her indicators and then when nothing was getting better went back for more tests and was diagnosed with Rheumatoid Arthritis.

Good luck with your brother. Hope all goes well and he gets treated and starts to feel better!
 
Lyme's disease is not fun at all. As a PP stated, a lot of doctors don't believe in it being chronic. I used to be a skier - addicted to the sport. Would get a house and season pass and would ski from first chair to last chair - 7.5 hours straight with short bathroom breaks and lunch breaks. No matter the weather! About 2 years ago I suddenly couldn't ski! My legs would just give out from under me. Thought it was from my new boots, orthotics, etc. Went the the doctor, but since it was the end of the season, I let it go. The next winter comes and again - I can't ski. My thighs would burn like I had done 10000 squats. I was falling constantly (and I never fell!). Still tried to work with the boots - but no help. I already had my house and pass and wasn't even able to ski more than an hour - and I was back on bunny slopes after doing black diamonds.

Finally - that January I was diagnosed with Lymes! I was actually happy bc I thought I was going nuts! Went through tons of antiobiotics on and off for 6 months, but my legs and knees and wrists were still awful. Really never got back on the slopes full force bc then I had fear - and you can't ski when you are scared.

Fast forward to a year and a half later. I haven't skied since Feb 09. Never went at all this past season. Quit my gym after being a gym rat for 8 straight years. The pain in my knees is unbearable at times. I am on meds for the joints, it does help - but at this point it's just masking the pain. My knees pop constantly - but it hurts like crazy. My last trip to Disney it was extremely humid. I couldn't stand in line. I was on the ground in all lines and sometimes couldn't get up. Standing still is god awful painful. A CM saw me in tears the one day and told me to ask for a GAC pass. It helped a lot when I needed it and knew I wouldn't be able to stand. For some reason, walking is ok - but standing still is excruciating.

This disease has changed my life. I'm 39 and extremely active and look completely healthy. It really messes with your mind bc you feel like you should be able to do everything and then this joint pain makes you want to crawl into bed and die. Have your brother see an Infectious Disease doctor that specializes in Lyme. They can be very helpful. I can't imagine this is how my life will be forever. I can't believe I'll never ski again - but now I'm so afraid that I don't even want to go.

Depression is a big part with some people. There are tons of Lyme support groups. Maybe that will help him. Best of luck, I really hope he can find some help.
 
"Chronic lyme disease" as a disease entity does not exist. Untreated lyme disease exists but once it is treated effectively, the infection no longer exists. There is a condition known as "neurologic lyme disease" that is an encephalitis, but it is extremely rare and is only diagnosed by a spinal tap. Here is the beginning of an article that may be useful. The entire article is very interesting and easy to read. The Attorney General, Richard Blumenthal, sued the IDSA for their scientific stand against these so called "lyme disease practitioners who peddle quackery at the expense and suffering of patients who almost always are suffering from some other undiagnosed ailment. It was suspected that he "knew" someone who claimed to have chronic lyme disease. The IDSA did not back down however but were forced to review the data and yet came up with the exact same conclusion.
Current Concepts
A Critical Appraisal of “Chronic Lyme Disease”
Henry M. Feder, Jr., M.D., Barbara J.B. Johnson, Ph.D., Susan O’Connell, M.D., Eugene D. Shapiro, M.D., Allen C. Steere, M.D., Gary P. Wormser, M.D., and the Ad Hoc International Lyme Disease Group*
Lyme disease, the most common tick-borne infection in the north- ern hemisphere, is a serious public health problem. In North America, it is caused exclusively by Borrelia burgdorferi sensu stricto (hereafter referred to as B. burgdorferi), whereas in Europe it is caused by B. afzelii, B. garinii, B. burgdorferi, and occasionally by other species of borrelia.1
This complex infection has a number of objective manifestations, including a char-
acteristic skin lesion called erythema migrans (the most common presentation of
early Lyme disease), certain neurologic and cardiac manifestations, and pauciarticu-
lar arthritis (the most common presentation of late Lyme disease), all of which usu-
2
1422
ally respond well to conventional antibiotic therapy. Despite resolution of the objec- tive manifestations of infection after antibiotic treatment, a minority of patients have fatigue, musculoskeletal pain, difficulties with concentration or short-term memory, or all of these symptoms. In this article, we refer to these usually mild and self-limiting subjective symptoms as “post–Lyme disease symptoms,” and if they last longer than 6 months, we call them “post–Lyme disease syndrome.”
The word “chronic” has been applied to Lyme disease in a wide variety of contexts and is sometimes used interchangeably with the preferred term “late Lyme disease.” For example, in Europe, certain late neurologic manifestations of previously untreated or inadequately treated infection, such as borrelial encephalomyelitis or long-standing meningitis, have been referred to as “chronic neuroborreliosis” (Table 1).1-3 In the United States, reports have described untreated patients with recurrent or persistent arthritis that lasts for up to several years, presumably because of active infection.4 The focus of this review, however, is not the objective manifestations of late Lyme disease but rather the imprecisely defined condition referred to as “chronic Lyme disease.” This term is used by a small number of practitioners (often self-designated as “Lyme-literate physicians”) to describe patients whom they believe have persistent B. burgdorferi infection, a condition they suggest requires long-term antibiotic treat- ment and may even be incurable.5 Although chronic Lyme disease clearly encom- passes post–Lyme disease syndrome, it also includes a broad array of illnesses or symptom complexes for which there is no reproducible or convincing scientific evi- dence of any relationship to B. burgdorferi infection. Chronic Lyme disease is used in North America and increasingly in Europe as a diagnosis for patients with persistent pain, neurocognitive symptoms, fatigue, or all of these symptoms, with or without clinical or serologic evidence of previous early or late Lyme disease.
http://www.nejm.org/doi/pdf/10.1056/NEJMra072023
 
The Attorney General, Richard Blumenthal, sued the IDSA for their scientific stand against these so called "lyme disease practitioners who peddle quackery at the expense and suffering of patients who almost always are suffering from some other undiagnosed ailment.
http://www.nejm.org/doi/pdf/10.1056/NEJMra072023

Thanks for the info. Now I know I am not going to vote for Blumenthal. I don't think it is a coincidence that at 5 my son had sore knees, was diagnosed with lyme, treated and still has sore knees at 8.
 


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