Please Help - I'm at a loss - Lyme Disease Message Board

Sandpuff · 03-18-2007, 09:52 AM

I have posted in many sites and several replies have been to get checked for Lyme. I'm so frustrated at this point I don't want to go to another doctor & just live with it. But it makes things hard for my family, not just me, and so then I feel I should try to do something about it. I'm 34 with 2 kids & I don't ever want to go anywhere fun because of how I feel and it breaks my heart. Here's what's going on:

1. fatigue - my worst symptom
2. swollen glands
3. low-grade fever (my temp runs about 97.5-97.9 normally and last week it hit 100 and stayed in the 99's for 6 days.)
4. 9 years ago had spinal myoclonus diagnosed at mayo clinic - this is jerking of my trunk that would make my head and shoulders jerk forward really hard, doesn't happen much now.
5. Muscles have been cramping in my abdomen and now the muscles on my right rib cage area feel constantly tight.
6. Have lost some weight even though I eat like a horse - 5'8'' and 121 pounds currently.
7. Sometimes so cold when I lay down at night will wear 2 sweatshirts and have 5 blankets on me while my husband lays there in a t-shirt. Then I wake up drenched with sweat & chilled in the middle of the night.
8. Toenails turn blue if I'm even a little cold
9. Chest pain
10. Body is stiff & sore when I get up somedays and my feet ache & my knee hurts sometimes (I always thought this was from all the years of competing in track in college, but now I'm wondering)
11. Eyes are dry and I drink water constantly. Will get up in the night and drink a 32 ounce glass and have to drink as soon as I get up in the morning, hence I spend large amounts of time in the bathroom

I could probably go on but I don't know what's relevant and what isn't. I'm so sick of feeling bad I could scream. I have a wonderful life and can only enjoy it a small percentage of the time because the rest of the time I am struggling to get necessary things taken care of.

I had a severe unexplained illness when I was 21 where my temp got over 105 and my family thought I was going to die. I lost 15 pounds in a couple of weeks and was never the same since. I also had mono twice - once at 11 and once at 19.

Sorry this is a book. I'm just frustrated and fed-up this morning and don't know who to turn to.

Michelle

ticker · 03-18-2007, 10:42 AM

Hi Sandpuff, welcome to the board!

I am sorry you have been so sick, I know it is frustrating. Below is a Lyme symptom list. You can have any combination of symptoms.

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

When Lyme disease is a possibility, it is very important to see a knowledge- doctor. Many doctors do not understand Lyme and treat with outdated protocols. No test is completley reliable, and results can vary by lab.

Besides Lyme, ticks can transmit several co-infections including Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. It is estimated that 60% of people who have Lyme are co-infected. It may affect treatment choice and progress. It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA.

The closest knowledgeable doctor to NE that I know of is in Springfield, MO. If you would like the name, let me know.

To me your sympotms sound like they could be from Lyme and Babesiosis, which is similar to malaria. The co-infection Babesiosis can cause night sweats, fevers, chills and many of the other sympotms you describe.

It is also important to learn as much as possible. I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses. He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. I also recommend the book "Everything You Need To Know About Lyme Disease (2nd edition)" by Karen Vanderhoof-Forschner.

I think you are on the right track. Hang in there okay? Good help is available.

Lebnin · 03-18-2007, 12:21 PM

Hi Sandpuff, Like Ticker says "hang in there" I think someone on this site can let you know of a lyme doctor in your area. I know you are frustrated going to doctors but you know yourself better than anyone else. If you believe there is something wrong THERE IS. I thought all my sudden joint pain was from years of working out but after taking antibiotics I noticed the pain was disappearing. I was seeing a sinus specialist after 3.5 years of other problems and seeing other specialist. She put me on antibiotics to get rid of a sinus infection. The infection never went away however, I noticed after 8 months of various antibiotics my joint problems and severe fatigue was disappearing. Anyway, have you ever been on any antibiotics since you've been sick? If so,how long of a stretch and how did it make you feel ? After finding this site I looked for a lyme doctor in this area. If you go online and look up lyme disease you will notice the controversies around the testing done for lyme. I tested negative twice until I found the Lyme specialist. Please contnue your search to get well, Take Care

Aquaticgirl · 03-18-2007, 12:33 PM

I think that your symptoms could be from Lyme Disease.

Have you ever been checked for Sleep Apnea? It kind of sounds to me like that, too.

ktp812 · 03-18-2007, 12:45 PM

Sandpuff

I know how you are feeling. I have many of the same symptoms as you including fatigue being the worse for me. I was sent off to neurologists and a sleep specialist. It is hard to explain that the fatigue is not a sleepy feeling but more of an total body exhaustion. Luckily the sleep doctor understood and said no need for a sleep study nor did I have apnea. Finally I found a LLMD who I actually went to for my chronic fatigue. I had no idea I could have Lyme but that is what it was after the blood test. I also have severe adrenal problems and hypothyroid. He knew exactly what I meant when I explained my symptoms and did the proper testing.
My life has been on hold for over two years now but I am confident I am on the right track with the antibiotics and adrenal medication. I know it isn't going to turn around overnight since I was sick for so long but I am hopefull. I would definately have the thyroid tested and the adrenals(using saliva). I honestly had no idea what was wrong with me and never even thought of these tests. Good luck. There is great information on this site.
Kim PS-adrenals and thyroid were a result from the Lyme