Warnings about Lyme Disease

[hotcoffee]

Several months ago I was diagnosed with Lyme Disease. I had been complaining of a multitude of the various symptoms of Lyme Disease for years. I had blood tests, CAT scans, neurological tests, MRIs, Utrasound, and more. When I finally got to the doctor who diagnosed the Lyme I was starting to have some drooping on the left side of my face, the muscles in my face were twitching from time to time, I was falling down [nose first] for no reason, suffering with tennitas, migrane headaches, and I was simply sick and exhausted all the time.

I have seen numerous posts on SOMD Online warning about the misdiagnosis of Lyme Disease. I've also seen some complaints about the significant number of Lyme patients in Southern Maryland. Today yet another site was posted to the Lyme Discussion thread.

It's time we discussed this again.

My husband says that he doubts I would have ever been diagnosed with Lyme Disease if I didn't have good insurance. I have to agree with him for two reasons.

1. The second and third stages of Lyme have so many symptoms that are common in aging. alzheimers and arthritis are good examples of common diseases usually attributed to aging.
   
2. Testing and treating for Lyme Disease is extremely expensive.
   I read somewhere that the treatment of Lyme Disease can cost the insurance company as much as $100,000.00 per patient. In my case [cosidering all the tests with normal range results] the combined cost over the years may be well into the $200,000.00 range. That cost could have been reduced significantly if the doctors had looked at the whole picture instead of stopping after each test.

Are there case histories of doctors who over medicate and [IMHO] experiment with their patients? Probably... But... should that tie the hands of our doctor who makes the diagnosis based on the overall clinical picture, including medical history and physical findings, keep up with the latest guidelines, follow his patients progress carefully, and care for the patient to the best of his ability?

For those of you who wonder now if I really have lyme... my test came back absolutely, positively, not doubt about it... positive for lyme... and when this round of antibiotics is done... I should feel much much better.

 

[crickett55]

thanks you for posting this. i think so often people are misdiagnosed and the docs want to blame it on something else or give the patients meds for psycological diagnosis instead. my daughter has been tested several times but has always come back negative. still she has almost all the symptoms. what other testing is what finally led to your diagnosis. she's had all the xrays, MRI's, and labs?

Several months ago I was diagnosed with Lyme Disease. I had been complaining of a multitude of the various symptoms of Lyme Disease for years. I had blood tests, CAT scans, neurological tests, MRIs, Utrasound, and more. When I finally got to the doctor who diagnosed the Lyme I was starting to have some drooping on the left side of my face, the muscles in my face were twitching from time to time, I was falling down [nose first] for no reason, suffering with tennitas, migrane headaches, and I was simply sick and exhausted all the time.

I have seen numerous posts on SOMD Online warning about the misdiagnosis of Lyme Disease. I've also seen some complaints about the significant number of Lyme patients in Southern Maryland. Today yet another site was posted to the Lyme Discussion thread.

It's time we discussed this again.

My husband says that he doubts I would have ever been diagnosed with Lyme Disease if I didn't have good insurance. I have to agree with him for two reasons.

1. The second and third stages of Lyme have so many symptoms that are common in aging. alzheimers and arthritis are good examples of common diseases usually attributed to aging.
   
2. Testing and treating for Lyme Disease is extremely expensive.
   I read somewhere that the treatment of Lyme Disease can cost the insurance company as much as $100,000.00 per patient. In my case [cosidering all the tests with normal range results] the combined cost over the years may be well into the $200,000.00 range. That cost could have been reduced significantly if the doctors had looked at the whole picture instead of stopping after each test.

Are there case histories of doctors who over medicate and [IMHO] experiment with their patients? Probably... But... should that tie the hands of our doctor who makes the diagnosis based on the overall clinical picture, including medical history and physical findings, keep up with the latest guidelines, follow his patients progress carefully, and care for the patient to the best of his ability?

For those of you who wonder now if I really have lyme... my test came back absolutely, positively, not doubt about it... positive for lyme... and when this round of antibiotics is done... I should feel much much better.

 

[royhobie]

Lyme disease is a huge problem in Southern Maryland. If you can't afford medical treatment by a local doctor, please contact the local health department for assistance. Do not let it go if you believe you have it. The tick that causes Lyme is very small and hard to see. Put some bird seed out, (limited amount) to attract some birds. Once various types of birds arrive, they will hang around and check the ground throughout your area for additional food. If you take the time, you can actually watch them do this. While searching, the birds will find ticks and other bugs to eat, greatly reducing your chance of Lyme disease. Putting Cutter on your ankles helps and try to stay away from trees with low branches. If you already have it, or you suspect you do, seek treatment immediately. Good luck.

 

[hotcoffee]

thanks you for posting this. i think so often people are misdiagnosed and the docs want to blame it on something else or give the patients meds for psycological diagnosis instead. my daughter has been tested several times but has always come back negative. still she has almost all the symptoms. what other testing is what finally led to your diagnosis. she's had all the xrays, MRI's, and labs?

A couple comments on testing....

• I don't think I was ever tested for Lyme by the other doctors.
• My doctor [the one that found the Lyme diagnosis] looked at all the symptoms, took a thorough family history, did a thorough physical exam and studied all the past test results
• Once my doctor saw the possible Lyme diagnosis, he started me on the antibiotics and ran a test.
• The Lyme responds to the antibiotics and shows itself

My doctor says that he's not a Lyme Doctor. He's a doctor with a lot of Lyme patients.

If I hadn't had the insurance to get all the tests, and if I couldn't afford to keep harping on my own behalf, I would still be getting sicker by the day.

Lyme disease is a huge problem in Southern Maryland. If you can't afford medical treatment by a local doctor, please contact the local health department for assistance. Do not let it go if you believe you have it. The tick that causes Lyme is very small and hard to see. Put some bird seed out, (limited amount) to attract some birds. Once various types of birds arrive, they will hang around and check the ground throughout your area for additional food. If you take the time, you can actually watch them do this. While searching, the birds will find ticks and other bugs to eat, greatly reducing your chance of Lyme disease. Putting Cutter on your ankles helps and try to stay away from trees with low branches. If you already have it, or you suspect you do, seek treatment immediately. Good luck.

This is good advice.

These ticks are really really really tiny. If you care for bushes and plants that deer relish, it might be a good idea to take a good hot shower and have someone check you for ticks after working in the garden.

 

[Lenny]

A couple comments on testing....

• I don't think I was ever tested for Lyme by the other doctors.
• My doctor [the one that found the Lyme diagnosis] looked at all the symptoms, took a thorough family history, did a thorough physical exam and studied all the past test results
• Once my doctor saw the possible Lyme diagnosis, he started me on the antibiotics and ran a test.
• The Lyme responds to the antibiotics and shows itself

My doctor says that he's not a Lyme Doctor. He's a doctor with a lot of Lyme patients.

If I hadn't had the insurance to get all the tests, and if I couldn't afford to keep harping on my own behalf, I would still be getting sicker by the day.



This is good advice.

These ticks are really really really tiny. If you care for bushes and plants that deer relish, it might be a good idea to take a good hot shower and have someone check you for ticks after working in the garden.

The ixodes tick is about the size of a period on a printed page (not enlarged, granny-is-going-blind page).

 

[hotcoffee]

The ixodes tick is about the size of a period on a printed page (not enlarged, granny-is-going-blind page).

Have you heard this song? Maybe more people would be gardening

On the other hand.... who would think such a tiny thing could cause such big problems.

 

[devinej]

I do wonder what percentage of people in SOMD have Lyme disease (and know it) vs. who don't.
I work outside with horses, have all my life spent a lot of time where ticks are, can't tell you how many ticks i pull off myself every summer. not to mention off the horses and dogs.
Other than the bullseye rash, what's the first sign that you should try to get tested and how do you convince the doc to do the test?
Its so easy to get the veterinarian to test your dog or horse, get them treated with doxycycline. why the heck is it so hard for people? Maybe i'll just get my vet to test me...lol
PS: how do i get brad paisley to check me for ticks?

 

[Jameo]

I do wonder what percentage of people in SOMD have Lyme disease (and know it) vs. who don't.
I work outside with horses, have all my life spent a lot of time where ticks are, can't tell you how many ticks i pull off myself every summer. not to mention off the horses and dogs.
Other than the bullseye rash, what's the first sign that you should try to get tested and how do you convince the doc to do the test?
Its so easy to get the veterinarian to test your dog or horse, get them treated with doxycycline. why the heck is it so hard for people? Maybe i'll just get my vet to test me...lol
PS: how do i get brad paisley to check me for ticks?

Most don't get the rash, or don't notice it. I never did.

 

[ICit]

I tested poss. for Rocky Mt. Spotted Fever... and so did my friend!
My Lyme titer is neg :shrug:

My Doc had no prob doing the tests for me due to some of the symptoms.... (I had treated myself already LOL)

 

[hotcoffee]

I do wonder what percentage of people in SOMD have Lyme disease (and know it) vs. who don't.
I work outside with horses, have all my life spent a lot of time where ticks are, can't tell you how many ticks i pull off myself every summer. not to mention off the horses and dogs.
Other than the bullseye rash, what's the first sign that you should try to get tested and how do you convince the doc to do the test?
Its so easy to get the veterinarian to test your dog or horse, get them treated with doxycycline. why the heck is it so hard for people? Maybe i'll just get my vet to test me...lol
PS: how do i get brad paisley to check me for ticks?

This is a pretty good site.... it speaks in plain language anyway....

When I saw this picture just now... I pinpointed the place and time I got bit. As a matter of fact... I know for a fact I have been bitten 3 years in a row. It happened in my back yard and it happened when I was gardening. I thought it was a spider bite. I got bit on my left hand each time. Each time my hand swelled too.

Apparently there are a few of these on the tube.

 

[ThundeRChunkY]

Several months ago I was diagnosed with Lyme Disease. I had been complaining of a multitude of the various symptoms of Lyme Disease for years. I had blood tests, CAT scans, neurological tests, MRIs, Utrasound, and more. When I finally got to the doctor who diagnosed the Lyme I was starting to have some drooping on the left side of my face, the muscles in my face were twitching from time to time, I was falling down [nose first] for no reason, suffering with tennitas, migrane headaches, and I was simply sick and exhausted all the time.

I have seen numerous posts on SOMD Online warning about the misdiagnosis of Lyme Disease. I've also seen some complaints about the significant number of Lyme patients in Southern Maryland. Today yet another site was posted to the Lyme Discussion thread.

It's time we discussed this again.

My husband says that he doubts I would have ever been diagnosed with Lyme Disease if I didn't have good insurance. I have to agree with him for two reasons.

1. The second and third stages of Lyme have so many symptoms that are common in aging. alzheimers and arthritis are good examples of common diseases usually attributed to aging.
   
2. Testing and treating for Lyme Disease is extremely expensive.
   I read somewhere that the treatment of Lyme Disease can cost the insurance company as much as $100,000.00 per patient. In my case [cosidering all the tests with normal range results] the combined cost over the years may be well into the $200,000.00 range. That cost could have been reduced significantly if the doctors had looked at the whole picture instead of stopping after each test.

Are there case histories of doctors who over medicate and [IMHO] experiment with their patients? Probably... But... should that tie the hands of our doctor who makes the diagnosis based on the overall clinical picture, including medical history and physical findings, keep up with the latest guidelines, follow his patients progress carefully, and care for the patient to the best of his ability?

For those of you who wonder now if I really have lyme... my test came back absolutely, positively, not doubt about it... positive for lyme... and when this round of antibiotics is done... I should feel much much better.

I have a few questions. I've never really gave it much thought before but I came across this post and I hope for a reply!

I was diagnosed with Lyme Disease when I was 15. I took antibiotics via PICC line for a month or so and was out of school but my mother passed away and did NOT want to be home during the day. I had the PICC line removed shortly after and they said I was good to go and just needed to follow up with my specialist. Well all things considered my mother was the one taking care of me and that never happened. So now I come to my questions/concerns. I never had a follow up. If they said I didn't need to take antibiotics anymore is it really that big of a deal, you think? When I was diagnosed the only symptom I had was excessive tiredness/insomnia. A few years ago I started getting migraine/migraine like headaches. I've never had them before but just thought it was genetics catching up with me since they run in the family. Also my knees ache so badly sometimes and that started around the same time as the migraines from what I can remember. I mean like I'll be sitting Indian style on my bed for a hot second and go to move or stand up and feel 8- years old cause I can't stretch my legs out right away! I'm still tired a LOT and I always blame that on my battles with depression. For example the other day I went to bed around 3am woke up at 1pm DEAD tired and took a nap almost immediately and woke back up around 3:30pm.

I was told when I was diagnosed with Lyme Disease that most of the symptoms never go away. So my question is... do you ever have any flair ups? Was I misinformed? I know I should go to the Dr. but I'm 22 almost 23 now, I have no insurance, and wouldn't have a clue where to start. I would just like some information from a fellow Lyme Disease diagnosee!

 

[DecemberGal]

I have a few questions. I've never really gave it much thought before but I came across this post and I hope for a reply!

I was diagnosed with Lyme Disease when I was 15. I took antibiotics via PICC line for a month or so and was out of school but my mother passed away and did NOT want to be home during the day. I had the PICC line removed shortly after and they said I was good to go and just needed to follow up with my specialist. Well all things considered my mother was the one taking care of me and that never happened. So now I come to my questions/concerns. I never had a follow up. If they said I didn't need to take antibiotics anymore is it really that big of a deal, you think? When I was diagnosed the only symptom I had was excessive tiredness/insomnia. A few years ago I started getting migraine/migraine like headaches. I've never had them before but just thought it was genetics catching up with me since they run in the family. Also my knees ache so badly sometimes and that started around the same time as the migraines from what I can remember. I mean like I'll be sitting Indian style on my bed for a hot second and go to move or stand up and feel 8- years old cause I can't stretch my legs out right away! I'm still tired a LOT and I always blame that on my battles with depression. For example the other day I went to bed around 3am woke up at 1pm DEAD tired and took a nap almost immediately and woke back up around 3:30pm.

I was told when I was diagnosed with Lyme Disease that most of the symptoms never go away. So my question is... do you ever have any flair ups? Was I misinformed? I know I should go to the Dr. but I'm 22 almost 23 now, I have no insurance, and wouldn't have a clue where to start. I would just like some information from a fellow Lyme Disease diagnosee!

Hello,
I have Lyme and have been undergoing treatment for a year. As far as my research has shown me the doctors are uncertain as to whether it can ever be cured. It is possible that like cancer it only goes into remission. They have discovered that the bacteria hides from antibiotics and changes form.
There are also the co-infections that can come with lyme. These can hinder the treatment for lyme from being effective. After being on anti-biotics for a year the doctor put me on a treatment for a co-infection and it has really been helping. I feel better than I have in a year. I am suppose to finish this treatment next week and hopefully just maintain with natural treatments to support my immune system.
As for the issue with not having insurance, some doctors might work out a payment plan for you. If you want to send me a private message I could give you a couple of places to check into.
I hope that this helps. I'm sorry you are having to deal with this. There are a couple of discussions on here concerning lyme that may help you also.
God Bless,
Kathy

 

[hotcoffee]

I have a few questions. I've never really gave it much thought before but I came across this post and I hope for a reply!

I was diagnosed with Lyme Disease when I was 15. I took antibiotics via PICC line for a month or so and was out of school but my mother passed away and did NOT want to be home during the day. I had the PICC line removed shortly after and they said I was good to go and just needed to follow up with my specialist. Well all things considered my mother was the one taking care of me and that never happened. So now I come to my questions/concerns. I never had a follow up. If they said I didn't need to take antibiotics anymore is it really that big of a deal, you think? When I was diagnosed the only symptom I had was excessive tiredness/insomnia. A few years ago I started getting migraine/migraine like headaches. I've never had them before but just thought it was genetics catching up with me since they run in the family. Also my knees ache so badly sometimes and that started around the same time as the migraines from what I can remember. I mean like I'll be sitting Indian style on my bed for a hot second and go to move or stand up and feel 8- years old cause I can't stretch my legs out right away! I'm still tired a LOT and I always blame that on my battles with depression. For example the other day I went to bed around 3am woke up at 1pm DEAD tired and took a nap almost immediately and woke back up around 3:30pm.

I was told when I was diagnosed with Lyme Disease that most of the symptoms never go away. So my question is... do you ever have any flair ups? Was I misinformed? I know I should go to the Dr. but I'm 22 almost 23 now, I have no insurance, and wouldn't have a clue where to start. I would just like some information from a fellow Lyme Disease diagnosee!

Sorry about the lapse. I really was hoping that I could report that Lyme can be cured. I guess if you catch it in time, take the right antibiotice immediately... before the toxins have a chance to make themselves at home.... then I guess it can be cured.

Once you get to the point where you need the pic line or central line for infusion therapy.... it's probably too late to get rid of it....

I had my central line inserted in November 2009. It was removed April 2010 nearly 5 months to the day.... and I had to get infusions 2 X a day every day for that period. My ability to fight off infection at that point was ZERO.... my B12 and D were whiped out.... but when the central line came out I was feeling so much better.... I really thought I was cured.

About 2 weeks ago the symptoms started coming back....

Exhaustion
Aching in the joints
Shooting Random Pains
Headach
Blurring in the eyes
Spots in the eyes
Short term memory loss
Attention Deficite
Mood Swings
Starving for oxygen
Weight Gain
The face twitching hasn't returned [hoping that one is gone]
My heart is still beating regularly [hoping that one is cured]

Nope.... once the bug makes itself at home.... it's apparently very very very difficult to evict....

I hope you are feeling a little better today.... hang in there .... find a great lyme doctor.... stick with the plan....

Sorry to hear about your mom....

Here's a link to the best support group I found.

I'll watch this site to see if you have any other questions.... welcome to anti-bambi land.... Oh and thumper can be a carrier too!

 

[ThundeRChunkY]

Thank you for the replies. It helps a lot to have support. I guess my first plan of action is to get tested again. I don't know if it would matter but it's a start. If anyone knows of any decent Lyme disease doctors in the area that would be tons of help. Apparently the internet is useless when it comes to LD! Go figure! I was thinking about just going to a regular doctor to be tested but then there are some doctors that think LD is just ridiculous so it would be a waste of money to go... Then there are doctors that could possibly blow it out of proportion and shake the change out of my pockets so to speak. I'm paranoid. I don't even know if that's caused by LD! But I know I am! lol. It's hard to differentiate between LD symptoms and just normal for me. Is that bad? I've always thought I was "crazy" in some way or another. There have been nights that I've kept my BF up at night crying cause I "just want to be normal and not feel like I'm a crazy." It's horrible. Reading about this post made me think about things so much more. I started getting migraines and knee pain around the same time. I've always been a night person but actual insomnia started around that time as well. Believe it or not I'm praying that my LD has come back. With everything that is wrong with me I feel like it could be something worse or even worse... just a bunch of things wrong with me.

I tend to ramble ... esp. at 4am. Thanks for reading/replying if you did/do!

 

[lisa8439]

I honestly think that in the coming years, lyme will become more of an epidemic. I am sure that many people in this area have it and don't even know, since the symptoms are so vague that most people chalk it up to something else and doctors don't even have lyme on their radar. Add that to the fact that a good number of people that have lyme test negative for it and you have a lot of sick people walking around out there.

I've been doing quite a bit of research on lyme - I have lyme myself. First tested positive about 10 years ago (after having been diagnosed with a brain tumor, MS, lupus, you name it...) and I was treated with IV antibiotics back then. After I gave birth the symptoms started creeping back - and fast forward about 6 years and I feel like I was never even treated. I had been tested for lyme about 4 years ago when the symptoms started again, that test was negative and I was sent on my way with a rheumatoid arthritis dx - then I was tested again last winter and the test came back positive. I KNOW that I wasn't bitten again by a tick - so the disease must be more auto-immune in nature like other posters have said. I believe that once you have lyme (and it gets past the initial stage) then you are a lymie for life. You never get rid of it. Yes, that is sobering news for lymies - but it is so important to know so you can adjust your life accordingly. I have a picc line in again right now - and I am in my 30's and will likely have a third line, maybe even a fourth, in my lifetime. Ticks suck...

Hotcoffee we have the same doctor - I am very thankful that I found him - even after my positive lyme test in December my previous doctor gave me 2 weeks of abx and told me I would be fine. I knew otherwise but he wouldn't listen... because apparently the CDC knows my body better than I do. Thank goodness there are doctors out there who *listen* instead of just following a textbook.

 

[LauraWeston]

Dr. Cafferty's Office

Hello!
I hope you all are feeling better soon! Sorry you have to go through all that. Could anyone please tell me if Dr. Cafferty is seeing patients, and if he has gotten rid of that crazy office manager? I think her name was Stephanie. I use to see Dr. Cafferty, (not Lyme related), but left after listening to his office manager curse and carry on each time. My two boys(then both under 5), received an early education of 4- letter words there in the waiting room. I remember the patients use to all look at each other with incredulous looks every time she screamed at someone on the telephone, or called someone an ugly name- such as Crazy F****** B****! One man was thinking about trying to sell popcorn in the waiting room as part of her side show. She also talked to Dr. C himself like he was dirt on her floor. After our 3rd visit of witnessing her shameful behavior, we finally left. It is a shame as he is a good doctor, and seems like a caring person. I really do need to have one of my children tested for Lyme though, and understand he is very good with Lyme patients and would like to try and go back. We all also need a regular family doc. If that crazy woman is still there, I would rather find a different doctor. I don't mind a long drive if need be. Any suggestions? Really, I hope you all will get well once and for all. Hugs, Sue

 

[ShyGirl]

Dr. Cafferty's girlfriend no longer works in the office.

I recently heard that they are asking patients to be nice to the staff.

 

[bresamil]

Dr. Cafferty's girlfriend no longer works in the office.

I recently heard that they are asking patients to be nice to the staff.

she's his wife. i'm surprised she's gone.

 

[Gripper]

For all my fellow lyme sufferers, I have set-up a facebook page - please go there and share your online resources, book recommendations and stories of treatment. I hope it can become an online support group for those who cannot make it to the group in Calvert.

Southern Maryland Lyme - Community | Facebook

 

[Roman]

Dr Cafferty

she's his wife. i'm surprised she's gone.

Stephanie is his Wife, but I heard she works from home now, although..she makes frequent stops to the Office for various reasons. Don't let that stop you from going there, because he is a GOOD Doctor, and is very compassionate to LD Patients, and his other Patients as well.