Husband Still So Sick After 6 Mos of Lymes --- Please Help
Hi all ... please help. My husband got bit May 1st and had the bullseye rash and was dx with Lymes and received the doxy antibiotic 3 different times. Unfortunately, my husband 6 months to now is still so very very sick to his stomach and has missed so much work. He has every symptom as most of you. We've been to so many drs, as I am hoping for him to receive a few antibiotics together, as I've heared they've helped many. Anyway, now, since from being on the doxy, his lyme titer shows negative so no one will give him the 2 antibiotics together and says he just has to live with it.
My question to you all is do you know of any reputable drs in the Frederick, Maryland area and also how long can he be this sick ... it's heartbreaking and so discouraging as I feel he's slipping away.
Re: Husband Still So Sick After 6 Mos of Lymes --- Please Help
Hi Somany-
I am really sorry to hear your husband is not well. His experience of the medical community with this disease is so typical! It is so frustrating! Here are a couple names I've seen in your area.
Dr. K. Singleton in Towson, MD is highly recommended. I have also seen Dr. Mark Garzon in DC's name on this board.
Most Lyme patients do get better- hopefully your hubby will stop slipping away as soon as you see a good LLMD.
Re: Husband Still So Sick After 6 Mos of Lymes --- Please Help
Hi SoManyFeelings, welcome to the board!
I am sorry your husband is sick. What dose of Doxy did he take? How long was he treated each time? It is possible he was not treated long enough and/or aggressively enough initially.
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
It is very important to see a kowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. No test is completely reliable, and results can vary by lab. It is my understanding that the ELISA or titer is the least reliable test and the one most doctors run first.
Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Many 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. Has he ever been tested for these?
Dr. Kenneth Singelton in Towson does come highly recommended. I recently heard some not so good things about Dr. Garzon, so I would not recommend him. There is also a doctor in Timonium who is supposed to be knowledgeable, but I don't if it she is. If you would like her name, let me know.
Be aware of the Jarisch-Herxheimer Reaction (herx). Often, when people who have Lyme take antibiotics, their symptoms become worse or they get new ones. When the antibiotics kill the bacteria, toxins are released making them feel sicker. It can be very scary when it happens, but it is a good sign the antibiotics are working. Although it can vary individually, many people experience this at the beginning of treatment and every three to four weeks.
During treatment, it is a good idea to document your husband's symptoms daily. One way to do this is to list the three main symptoms he has each day and a numerical rating of their severity, from 1-10. Over time when you review this, you can see when his herxes occur and how he is responding to the meds.
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 (on-line). 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.
Hang in there okay? Good help is avaiable. Your husband is lucky to have your support.