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Lyme Disease Message Board


Lyme Disease Board Index


I correspond with people from all over who have Lyme Disease and other tickborne illnesses. Lyme Disease is known as the great imitator because its symptoms mimic those of many other diseases. Many people who have Lyme, were first diagnosed with Fibromyalgia, Chronic Fatigue Syndrome, MS, ALS or other diseases. They suffered for years and then found out that they have Lyme Disease. Like the other diseases mentioned, tickborne illnesses are extremely debilitating on many levels. Prompt and proper treatment greatly reduces the possibility of long-term complications; however, many people go undiagnosed for long periods of time and the disease becomes very chronic. I am hoping this post may help.

Lyme Disease is a multi-system bacterial infection caused from the bite of an infected tick. It is the second fastest-growing infectious disease in the United States after AIDS. This is very significant, yet little is being done to educate people about its seriousness and prevalence. Many people who are bitten do not know it because ticks are tiny and they inject a numbing agent so you cannot feel them. Lyme Disease is difficult to diagnose because no test is completely reliable. As a result, it is grossly underreported. Many people have it and do not know it. Often, doctors falsely believe that Lyme exists only in the northeast, when in fact it has been reported in every state.

Below is a Lyme Disease symptom list:

SYMPTOM CHECK LIST

Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Headache
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Tremor
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol


Ticks can also transmit several serious co-infections:

--Babesiosis is similar to malaria. It is caused by a protozoa that invades, infects and kills the red blood cells. Symptoms include chills, sweats, fatigue, headache, weakness, muscle aches and pains, dizziness and heart palpitations.

--Ehrlichiosis is an infection caused by a rickettsiae (a bacterial parasite) that invades and infects the white blood cells. There are two types of Ehrlichiosis--HME and HGE. Symptoms include fever, malaise, headaches, chills, sweating, severe muscle aches and pains, nonproductive cough, abdominal pain, nausea, vomiting, and diarrhea.

--Bartonella is also known as cat scratch fever and has recently been attributed to tick transmission

Many people who have Lyme Disease have one or more of the co-infections. These illnesses are treatable with high-dose antibiotics. It is very important to see a knowledgeable doctor because many doctors do not understand these illnesses and treat them with outdated protocols. A bullseye rash is a definite sign of Lyme Disease, but only about 50% of people who have Lyme ever get a rash. If you get a rash, it is a good idea to photograph it for documentation. Place something near it, like a coin or ruler, before photographing to give it size definition. That way you have evidence of it if needed later. Here are a couple of sites where you can see some, not all, examples of Lyme rashes:
[url="http://www.lyme.org/gallery/rashes.html"]http://www.lyme.org/gallery/rashes.html[/url]
[url="http://www.dis.strath.ac.uk/vie/LymeEU/images_medical.html"]http://www.dis.strath.ac.uk/vie/LymeEU/images_medical.html[/url]


The best defense against Lyme Disease and other tick-borne infections is prevention and education. There is a wonderful tick repellent you can buy for your clothing at Wal-Mart in the sporting goods section for about $5.00. It is called Repel Perma One. You spray your clothes and let them dry at least 2 hours before wearing (read the label entirely). If a tick even walks on them, it will die instantly. This is for your clothing only. It will last for up to two weeks or through five washings. You will still need a repellant for your skin. Research to determine which products are safe and best for children.

Wearing light-colored clothing allows ticks to be seen easier. Realize that ticks can be as small as the period at the end of this sentence. Long sleeve shirts and long pants with clothes tucked in properly, reduce the amount of skin exposed. Also wear a hat. When coming inside after outdoor activity, remove your clothes promptly and wash and dry them at the hottest temperatures possible. Check for ticks on yourself, your children, and your pets--including under arms, behind knees, behind ears, on scalp, bellybutton etc.

If you find a tick, the only safe way to remove it is with tweezers only. Bring tweezers as close to where it is attached to skin as possible, and grasp its mouthparts. Pull the tick straight back. Do not burn it with a match, do not put Vaseline or alcohol on it, and do not remove it with your fingers. Any of these methods will increase your risk of infection. Save it in a Ziploc bag, it can be tested for disease at IgeneX lab in Palo Alto, CA.

I highly recommend the book "Everything You Need To Know About Lyme Disease" by Karen Vanderhoof-Forschner. It gives a lot of information on the disease, symptoms, treatments, tick identification and prevention, managing your property etc. Most bookstores can order it if it is not in stock or you can buy it on-line.



[This message has been edited by moderator1 (edited 04-04-2002).]
Ticker, I live in NY. Back in about Oct. last year I found what looked like some sort of tick. I had this bump that I was scratching for a while and when I actually looked at it, it looked like a tick - black with some legs (sounds gross). I pulled it out along with some skin - it left like a pit in my skin. Unfortunately, I did not save it.

Since about November I have all these symptoms. I hurt my neck one day raking leaves and thats what started it all (have long history of neck pain). Shortly after I developed weakness in my legs with burning and tingling, which I thought was from muscle relaxers I was taking for my neck so I stopped taking them but did not go away. Long story - trying to make this short: went to orthopedist who sent me to nuerologist and both doctors did a whole bunch of tests and found nothing. Up until now I did not even think of Lyme disease but when I remembered the tick I saw my regular doctor for bloodtest. Came out negative. Now I am highly frustrated! :mad:

Finally an MRI showed a herniated disc in my neck but doctors were very reluctant to think it would cause symptoms in my legs. Eventually one doctor said it was possible and I had surgery.

Meanwhile weakness is back with tingling and burning. Also I get pain behind my knees and on top of feet, pelvic pain where like my thigh meets hip. I also have sore throats constantly - more often than not and a lot of other symptoms on your list.

On top of all this, I was diagnosed with Epstein-Barr virus back in August (which could explain the sore throats)and because of extreme tiredness, dr. said I probably had CFS.

Do you think I should be tested further for Lyme Disease? I heard the simple bloodtest I got was not very reliable. I just don't feel like my doctor has gotten to the bottom of this. At first I was sure it was neck related but now I just don't know. Am I going crazy? I just want to know what this pain and weakness is so I can deal with it. I'm only 36 years old but feel like I'm 80.

Any advice or info would be appreciated.
Thanks, Renee

[This message has been edited by Renee016 (edited 05-08-2003).]
I'm so glad to have found this discussion thread, but I'm not sure where to start. I'm posting here about my Mom, who is 71 years old, and was just diagnosed with Lyme Disease. I should give you a brief history (the great imitator, for sure!)

Several months ago, she ended up in the hospital with severe flu-like symptoms (i.e. fever, vomiting, the works...) After much testing, she was found to be anemic, dehydrated, and having two gallstones. Until they could get her feeling better, however, they didn't want to do surgery. While on IV fluids, she started swelling very quickly and ended up in intensive care. Some days later, after she stabilized, and after giving her a blood transfusion (helping the anemia), she was considered strong enough to perform surgery to remove her gall bladder. At that point, they thought it was the source of all her ills. But, it was only the beginning. (FYI, before she went to the hospital, she had a fall due to her leg being weak, and to use her words, the leg "wouldn't hold her weight." And, during that hospital stay, she started complaining about a numbness on the top of her left shin bone, with pain in her groin area.) To shorten this story, she went home to recover from surgery, which she did well.

But, the pain got worse and worse in her leg. It became very severe, and it moved to other areas (groin, back, hip, etc.) She was referred to a neurosurgeon, who said her pain wasn't jiving with her MRI. The disc associated with the pain she felt was fine. They found on a neck MRI, however, that she had 3 herniated discs, which COULD've been causing the pain, but he wasn't sure. So, my poor 71 year old mother had a second surgery in less than 30 days to fuse one of her discs in her neck (only the worst one was the culprit, her neurosurgeon thought.)

Again, she healed well. Now, I've had back surgery, and the pain I experienced in my leg, all the way down to my feet, was almost instantly better after surgery. I mean, the surgical pain was there, but the awful pain that put me under the knife was gone. Not so for Mom. She did get some relief when they put her on steroids while recovering in the hospital, but that has been the only time she's had any relief since this rollercoaster ride began.

Jump forward to today... she is on several different meds that have changed a bunch due to possible complications with her other ailments (diabetes, high blood pressure, etc.) But in a nutshell, she has to take some kind of pain medication every 4 hours or so to keep the pain "broken". If we go over that, she's crying (which is so not in her character!) We're talking Percoset, Oxycontin, earlier on she had a morphine patch, 600 mgs Ibuprofen, which she can't take now because of possible kidney complications... yada yada yada... She's having depression and anxiety symptoms now, which is so painful for all of us to witness. She complains about her skin not feeling right, especially in her left leg. It's like it's hypersensitive. She wants me to rub it for her, but just touching her skin becomes unbearable. She has problems with blankets just lying on her skin. She’s wearing pajama pants that are size 3XL, not because she’s large, but she can’t bear to have anything constrict her stomach. She’s experiencing lots of weird stuff like that – too numerous to mention here.

She tested positive for Lyme titers (I can't remember their technical name), and she's been on Doxycycline. Her neurosurgeon broke the news to her this way.... at her follow-up appt after neck surgery, as she’s sitting in a wheel chair in tears from the pain, he says to her, "I have good news for you... you have Lyme Disease." I guess he meant it's good news because she didn't need low back surgery too, but this is anything but good news. He told me later that if it were his family member, he would have her on Doxycycline at least 3 months, but he only prescribed her for 6 weeks, as this is “beyond the scope of neurosurgery.” Who knows how long she’s had it, as she never had any rash that anyone can remember (just to complicate things.)

Her primary care physician did a follow up test, and found the titers to be decreasing. But, she is still suffering so awfully. I called him today to tell him this, and he wants to wait until next week before he refers her to someone in pain management, just because she is “responding well to the treatment.” Based on what?? The titer reading? Who cares about the reading if she’s still in so much agony!?! He mentioned an infectious disease doctor, but said he/she would do the same things he is doing.

After reading some of the posts here, I’m wondering if she has secondary infections… But, wouldn’t they be treated with the same antibiotic as the Lyme? And, I asked about IV antibiotics, but her doctor told me that’s only when there’s heart involvement, which I guess, she doesn’t have. But, I’m not even sure if they’ve done tests on her heart…

What should I do for her at this point? Should I post my verbose message somewhere else??? I just feel so helpless to do anything for her. I look at pictures of my Mom six months ago, helping me with my 10 month old (now 16 mo old) daughter – she was such an active, happy woman; loving to play with her newest grandchild. She's been reduced to a suffering, miserable, barely existing person - losing weight, and hating her life. Just recounting this has brought tears to my eyes. Where do we go from here????
[QUOTE=ticker]Bringing this thread to the top.[/QUOTE]

This is interesting for me you see I was bitten by something when I was on holiday in Florida last summer (I'm from the UK) I thought it was the usual mosquito bites which I always, always get no matter what but a week after I got home I got up one morning to find the bite sites inflamed again and there was that bullseye rash there. I had 4 bites like this.

I'm currently having my bloods tested for thyroid, iron, folate and hormones (I thought it could be premature menopause as there is a family history) and I didn't think to say to my doc. I had been down to see him but he wasn't there it was a locum that saw me, saw the rash and said if it didn't go away to go back. My GP probably still doesn't know anything about it.

I've got a lot of the symptoms described here and had a particularly bad episode of chest pain that I've never experienced before, it felt like a heart attack at the time.

I think I'll mention it to him when I go back for the results.

Thanks for putting this up. :)
Dear Ticker: I have been reviewing the Lymes Disease information and have not been able to find a connection between LD and an enlarged liver. My husband has been suffering from joint pain, muscle weakness and severe pain in his shoulders. He has several of the symptons but does not remember being bitten. We have a cottage in Clarion County, Pa., he cuts the grass, hunts and walks in the woods. He is just beginning to be diagnosed (last week) and one of the blood test ordered was for Rhumatoid. My daughter-in-law suggested we research LD. Any comment or suggestion would be welcome. Thanks in advance. pvh10
First, i would like to thank TICKER for taking the time to get so much important information out there to people. I can see a number of people have already benefited from it. Lyme is truly 'the great imitator'. I have known so many people who have been misdiagnosed with MS and a host of other autoimmune diseases before finding out they had Lyme. Please read Tickers symptom list. If you have any of them, please seek THE PROPER TYPE OF DOCTOR. My personal suggestion is to start with an infectious disease specialist and get tested not only for Lyme but the co-infections on Tickers list as well. If positive, u can stay with them, but preferably seek a Lyme Specialist if one is near you. Also, make sure you're on the medicine LONG enough-big mistake that many docs make. A few weeks usually doesn't cut it.

I originally went to my regular doctor (GP) in 2002 with many of the symptoms listed (minus the rash). He finally diagnosed me with Lyme & treated me with doxycycline for 3 weeks (ideally, it should be at least 4-6 weeks). I was re-tested, and told I was fine. I went home & thought nothing more of it.

A year later (after never feeling 100%), I was severe again, and went to a specialist. He got the lab results from my other doc and said the titers had still been high enough that I should have continued the doxy. I still had it all that time! And who's to think the doc we go to for everything wouldn't know what they're talking about? Why wouldn't they refer you to a specialist? But they can't know everything and that's why there are specialists out there for diseases like this. Because of my new doc, I also found out I had Ehrlichiosis & Bartonella. I have talked to more than a few people that experienced the same thing so [I]please seek proper medical attention[/I].

I had been treated with numerous anti-biotics with little success until I got the IV (Rocephin), which I did for 8 weeks. After the Rochephin i felt SO much better (Monicarenea, I would highly recommend the IV if nothing else is working, i know people who have had lasting success with this). Unfortunately, after 6 mo., I have relapsed. My doc is coming up empty on ideas after 2 months of oral anti-biotic treatment with no success. I am at my wits end right now, suffering from neck and back pain, headaches, fatigue, joint pain, and depression. I am not responding to anti-biotics anymore (which happens from taking them too long, not that we have much of a choice). If anyone has any input, let me know...and i'll keep you posted if I have success. I am in the process of trying to find a good Lyme specialist in my area, Northwest NJ (warren cty.)

One last interesting tidbit from a Newsweek article last week; a woman who suffered from Lyme 11 yrs, went to a Dr. Katz in Orange, CT . She had Lyme 5 yrs before it was diagnosed & 6 yrs of failed antibiotic treatment. This doctor used an experimental regimen of intravenous immunoglobulins (naturally occuring antibodies) to tame her overactive immune system & within a month she felt better. I'll have to run that past the doc.

Sorry this is so long, but as far as I'm concerned, the more info. we share and the better informed we become, the bigger the benefit. Let me know if you have any Q's and Good luck all!





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