Hi everyone- My name is Tara and I'm turning 23 yrs old next week. I have been having strange symptoms for the last 2 1/2 to 3 yrs and have been diagnosed with lyme disease. However, I was on the antibiotics (IV rocephin) for 5 weeks and needed my gallbladder removed as one of the side effects. In the meantime, about 1 1/2 month ago, I had been having severe pain in my jaw radiating up to my ear which I had seen an ear nose and throat specialist that said it was neurological and referred me to a neurologist. My neurologist said that I had levido reticularis, trigeminal neuralgia and some hyperreflexia I believe. He did not repeat my MRI of the whole spine (all 3 levels) and brain which I had just had back in July since it was all negative, but sent me for a spinal tap and some more blood work instead. He said he did not believe I had lymes disease but rather an underlying autoimmune disorder. The spinal tap came back positive for oligoclonal bands and a high IgG Index level. He has not diagnosed me with MS but thinks it is definately and possibility now. I am really afraid because I know alot about this disease since I am an MRI tech and see the effects quite frequently on alot of patients. I am also really nervous now because my symptoms never stop, I always develope new symptoms meaning I might have the primary progressive form of the disease which I hear is more disabling and being so young and in my prime, this is very nerve reckening. I believe the lyme titers were all negative and that this doctor was just treating me based on my symptoms since I have looked at the labs myself. However, my LLMD (lime doc) wants me to continue forward with treatment even though it caused me unneccisary surgery and says that lymes mimics MS. I was wondering if any of you know if oligoclonal bands are positive in lymes? My western blot and elisa were both negative according to an infectious disease specialist and immunologist. I am really confused and scared at this point. Can MS be diagnosed through a spinal tap culture alone and somewhat abnormal neurological exam? I thought there had to be 2 seperate attacks and a number of plaques or lesions seen on the MRI for MS to be diagnosed according to criteria?
My symptoms are as follows: heat intolerance, muscle twitches all over my body, frequent urination, levido reticularis (mottled skin), fatigue, shortness of breath, skin changes, raynauds phenomenon (blue fingernail tips), butterfly rash when exposed to light/and or heat, rashes all over my body, low grade fever, feeling constantly warm/flushed in the heat, trigeminal neuralgia, hyperreflexia, lhermittes sign, and recently a new symptom (within the last 5-6 months) is numbness and tingling in my legs upon walking/exercising. However, all the other symptoms have been present for 2 1/2 years (no remitting stages.)
I've had an extensive workup. I had seen a neurologist when 3 months into the onset of this all for the muscle twitches and he ordered a nerve conduction study test and emg which were normal. He did not feel it necessary that I had an MRI because he said I had a normal neurological exam and no evidence of weakness or numbness. However, being a student at the time in radiology, I convinced my friends to run a brain scan which was negative according to them. (which as a tech, you can see plaques on the flair images of the brain.) I have had repetative MRI's done by my coworkers at work (all normal) according to us of my brain and all levels of my spine however my immunologist laughed at me when I told him I had performed these test on myself and ordered a "legit" MRI of the whole spine and brain which was negative. I saw a rheumotologist and she was convinced I had lupus or some other connective tissue disorder. She did the complete lab workup (over 30 blood samples) for scleroderma, lupus, mixed connective tissue disorder, dermatomyositis, RA, just to name a few. All my results were again normal. I went to see an endocrinologist and he did not find anything, I saw an allergist and an infectious disease doc who ran there workup which everything was normal. I then went to see the immunologist who found clamydia pneumoniae (walking pneumonia) NOT an STD and gave me oral antibiotics for a few months to cure this infection. I must of picked it up in the hospital or something.
I am scheduled to see the neuro again in mid november of this month so I am really anxious to see what he has to say. He does not believe its lyme, and does not feel it is necessary to continue with treatment especially after my unexpected side effects of surgery. Thanks for listening.
I started having my symptoms when I was 26... Iam now 29.. I had a positive western blot test 2 of them and my neurologist told me it was a false positive.. I also had a spinal tap and had bands show up.. my neurologist told me it wasnt lyme.. I went to 3 I.D. doctors who told me there is no way it was lyme despite all the bloodwork saying it was.. my ruemotologist told me I had lupus... My ENT told me I had vestibular neuitius... My immuno told me i had a virus but they didnt know which one.. and about 15+ doctors and specialist and weeks in the hospital... came up with "its all in my head"... my symptoms were... head pressure, neck pain, jaw pain, tingles, chills, numbness, brain fog, lightheaded, off balance, dizzy, low blood pressure, low body temp... Thank God I found a great LLMD and have a PICC now and take a bunch of oral antibiotics... I feel alot better... I guess the reason for all this is I wish doctors could get on the same page for once... Its really annoying...
I would go back to see Dr. Raxlen. I know you saw him before and the trip is inconvenient but I think he is the right doctor for your situation. Stick with him and give him another chance. See him directly instead of Carolyn until you are on top of it.
Your symptoms sound like Lyme and or co infections.
Five weeks of Rocepin is very little treatment. If that is all you had, I would feel even more confident. Even after the IV treatment, it crucial to continue with orals. I'm surprised you were not on a PICC for 12 to 16 weeks.
The skin problems, rashes, fevers and many other symptoms are strong clues this is bacterial or protozoal.
I read your response on the other board but I'll respond here as we are discussing lyme. I understand what you said about your LLMD not taking ins, as the majority do not. They get hasseled from ins co about treating lyme long term. I don't like paying out of pocket but I understand their position. I do submit my receipts and get some reimbursement.
There is a LLMD in Boston and Falmouth. He may take ins. He is not always recommended and I think one reason is because he does not treat co-infections. There are some people on this board and others who have gotten better under his care. Most people do have to travel distances to LLMDs. If the choice is to see a closer LLMD or no LLMD at all, I would look up Dr Donata.
Maybe you can start a thread asking about him and get some feedback of others experience with him.
thanks guys- I am definately going to see another infectious disease doc who specializes in lyme who takes insurance around here for a second opinion.... i was only treated for 5 whole weeks on antibiotics and I do understand that this can be a tough bacteria to eradicate out of the body. I am keeping the PICC line in until my doctors straighten things out and figure out what is actually going on here. However, I thought that with the presence of oligoclonal bands in the CSF that it rules out lyme as a disease. Anyways, I will keep posting after I see this other doctor on Nov 16. I am bringing all of my lab work to her and she can try to make sense of this mess!
I am sorry you have been so sick. I know it is frustrating.
I do not know anything about the oligoclonal bands or the IgG index level, but some people who have Lyme were first diagnosed with other diseases including CFS, Fibromyalgia, MS, and ALS. I am not surprised the neurologist does not think you have Lyme. Many doctors are not open to this diagnosis.
Which lab did your Lyme testing? Do you have copies of your results? Are you currently being treated?
No Lyme test is completely reliable, and results can vary by lab. Some people who have Lyme test negative. On the Western Blot, the CDC requires a large number of bands to show for it to be considered positive yet many people who have Lyme do not have this many bands show. Lyme doctors often focus on which bands show, some are specific for Lyme.
What do your rashes look like?
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
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
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
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
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. Often infectious disease doctors are not the best to see for tick-borne illnesses unless they specialize in them.
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. Have you been tested for these? In my non-medical opinion, some of your symptoms sound like Babesiosis to me.
Did you see Dr. Raxlen? He comes highly recommended. I definitely would not recommend the doctor in Boston.
I can understand your pain and confusion. I too was considered for MS for months and I was afraid of primary progressive because the symptoms were progressing so fast. Like you, ALL my tests were negative (including WB)- Drs thought maybe all in my head. Until I saw an LLMD. A naturopath I go to specializes in both MS and Lyme. He says people should be happy when they get an MS diagnosis over Lyme because Lyme progresses much faster and the doctors know how to treat MS to slow down the symptoms. As you know, PPMS is only 5% so chances are, you do not have it (but you could be one the of unlucky ones).
If I were you, I'd go back to Raxlan, if you can. I see Dr D in MA. I agree lots of people have been helped by him but also have my concerns. I am giving him a chance for about 9 months. If nothing changes, I will move on but it will have to be with someone not covered and that scares me. So far, I have only gotten worse, not better. It has only been 3 months though.
Hang in there- do all you can to be sure of your diagnosis. You are probably aware the the treatment for MS hurts Lyme and vice-versa. Have you checked Dr. Burrascano's Lyme symptomo list? It may help you differentiate. One thing I think is a big differentiator is over- sensitivity to alcohol. I know people on the MS board that have it but frankly, I wonder if they really have Lyme. None of the MS docs I spoke to thought that was an MS thing but it is very common in Lyme.