Hello Everyone I'm a newbie a friend of mine Carol just told me about this site and suggested I make a posting of my 17 yr old daughters symptoms and see what everyone here thought or could suggest to help. My daughter has been in and out of the hospital for the past 4 months. She had agonising pain in her feet. "Burning Feet Syndrome" they tried using morphine, dilauded, fentanyl, nuerontin, amitriptiline, prednizone...and none of these things help with her pain. They cannot find the reason for her pain. She has a chronic cough as well as severe muscle deteriation. They think the muscle deteriation is from the prednizone. She has lost 35 lbs, for 2 months she was unable to walk. She still has pain in her feet but not as severe as in the beginning. They tested for lyme disease..and it came back negative. Does anyone here have any suggestions? Any help would be greatly appreciated!
Posted by Lymetoo (Member # 743) on :
Well, I'd definitely ask for more testing. The best lab for Lyme testing is Igenex Labs in CA. Her symptoms COULD be from Lyme or other tick borne illnesses. It would be best to test for them all.
Lyme Disease Symptoms List 1. Unexplained fevers, sweats, chills, or flushing 2. Unexplained weight change--loss or gain 3. Fatigue, tiredness, poor stamina 4. Unexplained hair loss 5. Swollen glands: list areas____ 6. Sore throat 7. Testicular pain/pelvic pain 8. Unexplained menstrual irregularity 9. Unexplained milk production: breast pain 10.Irritable bladder or bladder dysfunction 11.Sexual dysfunction or loss of libido 12.Upset stomach 13.Change in bowel function-constipation, diarrhea 14.Chest pain or rib soreness 15.Shortness of breath, cough 16.Heart palpitations, pulse skips, heart block 17.Any history of a heart murmur or valve prolapse? 18.Joint pain or swelling: list joints_____________ 19.Stiffness of the joints, neck, or back 20.Muscle pain or cramps 21.Twitching of the face or other muscles 22.Headache 23.Neck creeks and cracks, neck stiffness, neck pain 24.Tingling, numbness, burning or stabbing sensations, shooting pains 25.Facial paralysis (Bell's Palsy) 26.Eyes/Vision: double, blurry, increased floaters, light sensitivity 27.Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity 28.lncreased motion sickness, vertigo, poor balance 29.Lightheadedness, wooziness 30.Tremor 31.Confusion, difficulty in thinking 32.Diffculty with concentration, reading 33.Forgetfuiness, poor short term memory 34.Disorientation: getting lost, going to wrong places 35.Difficulty with speech or writing 36.Mood swings, irritability, depression 37.Disturbed sleep-too much, too little, early awakening 38.Exaggerated symptoms or worse hangover from alcohol
REASONS WHY A SERONEGATIVE TEST RESULT MIGHT OCCUR 1. Recent infection before immune response 2. Antibodies are in immune complexes 3. Spirochete encapsulated by host tissue (i.e. lymphocytic cell walls) 4. Spirochetes are deep in host tissue 5. Only blebs in body fluid; no whole organisms needed for PCR 6. No spirochetes in body fluid on day of test 7. Genetic heterogeneity (300 strains in U.S.) 8. Antigenic variability 9. Surface antigens change with temperature 10.Utilization of host protease instead of microbial protease 11.Spirochete in dormancy phase 12.Recent antibiotic treatment 13.Recent anti-inflammatory treatment 14.Concomitant infection with babesia may cause immunosuppression 15.Other causes of immunosuppression 16.Lab with poor technical capability for Lyme disease 17.Lab tests not standardized for late stage disease 18.Lab tests labeled "for investigational use only" 19.CDC criteria is epidemiological, not a diagnostic criteria
i had lyme and was treated and it is mostly in remission until i get stressed either physically or emotionally.
i was hurt-i'm a teacher and was breaking up a fight and twisted both knees which already had arthritis and was battered all over my body. i limped for a few days and one morning woke up with incredible burning pain in my feet. one was worse than the other. my brother had to drive from far away to take me to a doc appt-a podiatrist i already went to for other things. he dx that it was nerve pain from the strain/sprain of the fight and from limping and used a combination of whirlpool, taping and other stuff. maybe ultrasound...i had to go every 2-3 days for awhile but he got me better and it has not come back. don' t know if this will help-if you get a podiatrist and need my docs name for a consult i will give it to you. good luck
Posted by Jillybean (Member # 8071) on :
I'm not sure I can answer any questions for you, but I was diagnosed with chronic/neuro-Lyme about 8 months ago. I was on IV meds for about 4 months until I developed what they are calling peripheral neuropathy in my feet.
The burning and pain is unlike any pain I have ever experienced. I am now under the care of a neurologist, and he is still running more tests.
Although the dose has to keep being increased, I have had alot of success with Lyrica (it is specifically for neuropathic pain). You have to take it for a while for it to work effectively. He also has me on Pamelor at night time, which is an anti-depressant, but has been found effective for neuropathic pain also.
I think the neuro is leaning towards this being caused from the Lyme, he even did a spinal tap, which of course came up negative for Lyme (approximately 80% of them do).
I wish you much success in finding an answer I wish I could have been more help, I certainly understand her pain. Jill
Posted by lymeHerx001 (Member # 6215) on :
yesyes yes,
this has been a major complaint past 3 years. BAD BURNING!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Cant stress enough. Worse with foods and exercise, never had this before
Posted by Shae (Member # 9442) on :
When she took antibiotics for her cough...her pain got worse even severe...when it had started to disapate. The dr's had us stop the antibiotics. This happened twice
Posted by Shae (Member # 9442) on :
Thank you all for responding...It has been a horrible 4 months and still no answers. She has been tested for everything you could think of. We started off with a podiatrist..then and orthopedic dr, then a rhuematoid dr...then a nuerologist. Shae was on nuerontin 3600 mlgs which is also an anti depressant that is known to help with nerve pain but in her case, it didnt work. Neither did amitriptiline. So she was wheened off of those. The critical care dr at the hospital she was staying in, suggested an experimental procedure, where he gave her epidorals into her calves which were hooked up to cathedars attached to pumps she wore in a fanny pack. They releived her pain from a constant 24/7 10 on the pain scale to a 7 or 8 which at the time was a huge relief. She was in such bad shape from having such severe pain, they literally didnt think she would survive. She hadnt slept in 2 months, and had lost 35lbs. And had lost the ability to walk due to pain and atrophy. They finally added clonidine to her medications which she took every 6 hours and then 3 at night to sleep. Keep in mind she was already on 180mlgs fentanyl patch 6 mlgs of dilauded every 3 hours 3600 mlgs of nuerontin.
Posted by Michelle M (Member # 7200) on :
My goodness, Shae. So sorry to hear this. The antibiotics making things worse is surely a lyme clue, however.
1. What lyme test did they run? If it was an ELISA (the usual initial test), they're worthless.
2. Insist on a western blot from IGeneX -- http://www.igenex.com -- do not let the doctor talk you into any other lab. ONLY use IGENEX, a lab in California. Please do this. Have IgG and IgM tests done for lyme. It's the very best lab, specialising in tickborne diseases.
3. What are her other symptoms, besides weight loss, cough and burning feet? Does she have any of the other symptoms on the list?
Considering her condition, I would look seriously into lyme. And until you go to THIS extent as outlined above, and even seek out a lyme literate doctor to see her, you haven't really ruled out lyme. Which by the way does cause burning feet. Mine used to feel like I was walking on hot coals. I can't imagine it not relenting. The poor girl.
Please let us know and good luck...
Michelle
Posted by Shae (Member # 9442) on :
Thank you Michelle My friend Carol B has given me the name of her doctor who I plan to call first thing Monday morning, it may be awhile before Shae can get in to see her, I am goin to see her regular pediatrician thursday about her chronic cough, I will ask her to do a lyme disease test and sent it to the lab you and carol recommend
Shae's list of symptoms 1] flushing & unexplained fevers 2] none until the burning feet started, then she lost 35lbs in 3 weeks 3] for about a yr before the onset of the pain she was tested for chronic fatigue syndrome, she seemed to become severely fatigued and have flu like symptoms that would appear n disappear within days 4] none 5] on and off in the neck area 6] constant checks for strep throat, but always negative...diagnosed with tonsilitis ALOT also sore throats that would last a day or two then disappear 7]NA 8] no 9] no 10] no 11] N/A 12] we were told she more then likely had irritable bowel syndrome, when she started having alot of stomach aches about a yr prior to all this 13] same as above 14] she had alot of chest pains and had heart tests done, which showed she had a healthy normal heart 15] she now has a chronic cough 16] she has complained of feeling like her heart was doing flips or racing...but again tests showed no problems with her heart 17] no 18] since this alot of ankle swelling and pain 19] she was taken to the emergency room last summer because she woke up with severe pain in her neck, she couldnt move it they said it was a severe muscle cramp and in a few days it went away 20] yes 21] none 22] she was diagnosed with migraine headaches a few years ago 23]same as # 19 24] these symptoms started around 4 months ago 25] no 26] light sensitivity, and blurred vision...we sent her last summer for her annual eye test and found she was in desperate need of eyeglasses a overwhelming difference from just 6 month prior eye exam 27] ringing in the ears 28] alot of nausia and care sickness 29] now she has alot of dizzines and lightheadedness...but it could be from all the medications she's on and the ones she is withdrawling from 30] no 31] when she is fatigued or stressed 32] again when tired or stressed 33] ^ 34] no 35] she writes extremely slow 36] depression but that is more recent 37] she has had alot of problems sleeping in the past year, we contributed it to stress, grades...tests...she is a perfectionist and worries alot 38] doesnt drink
Posted by fatigued15 (Member # 6437) on :
So sorry to hear about your daughter. What happened when she was put on Prednisone?
I sent you a private message so check your box.
Posted by TerryK (Member # 8552) on :
I would suggest that you don't even bother being tested for tick borne illness by anyone except a LLMD (Lyme Literate MD). The tests are highly unreliable and you can have negative results even from IgeneX and still have lyme or co-infections. The only one who can tell you if lyme is a possibility in your daughter's case is a good LLMD.
Many LLMD's test for an array of health problems since so many of us with lyme have many problems. I would look for one who will run a chronic fatigue panel, immune system tests, allergies, metal toxicity etc.. Go to the seeking doctor's part of this website and find someone who is recommended by other patients.
I am not a doctor but in my opinion, you will only get the run around by mainstream allopathic doctors because they don't understand lyme disease or other illnesses with similar symptoms.
I wish you and your daughter the best.
BTW - I have burning feet too. Probably not as bad as your daughter from the sounds of it but I've had them for a long time with undiagnosed lyme disease. I spend a lot of time "outside" my body because that is the only way I can deal with the pain. It is a mental state of mind that is helpful, at least for me. You might see if some sort of self hypnosis techniques might be helpful for her in dealing with the pain. Terry
Posted by Lymetoo (Member # 743) on :
I would get the testing done by an LLMD also. It is very important how the blood is handled at the time it is taken, how and when it is shipped to the lab, etc.
Your poor daughter has ALOT of Lyme symptoms. Make sure she is also tested and TREATED for babesia. The heart stuff sounds more like babesia, which she could have in addition to the Lyme.
Posted by Lymetoo (Member # 743) on :
The following signs/symptoms may be present in those infected with Babesiosis: Fatigue* Arthralgias* Myalgia* Drenching sweats* Headaches* Emotional lability* Depression* Dark urine* Splenomegaly* Dizziness* Nausea and vomiting* Cough* Dyspnea* Fever* Chills* Hepatosplenomegaly* Jaundice* Malaise* Shortness of breath* Bleeding tendencies, bruising* Thrombocytopenia* Hemoglobinuria* Hyperesthesia* Pulmonary edema* Encephalopathy* Low to normal range leukocyte counts* Possible elevated levels of dehydrogenase, bilirubin, transaminase* Anorexia* Approximately 25%- 66% of Babesia patients are known to be co-infected with Lyme disease. These symptoms may continue for long periods of time, decrease, then return. A low Babesiosis titer (IgG) often indicates a chronic infection. An acute or current infection may show a higher reading on the IgM test initially. There are over 100 species of Babesia in the United States but only ONE or TWO species are currently checked by commercial labs.
Posted by Aniek (Member # 5374) on :
Shae,
Is the burning pain your daughter has muscle pain? Some people have burning skin, and others have burning of the muscles themselves.
I have pain in the muscles of my feet. I find that wearing elastic ankle supports, they look like ace bandages but you slip them on, help reduce the pain. I wear a size that is small enough that it feels tight without being painful.
For muscle pain in general, I had great success with taking Flexeril. It's a muscle relaxer. I take it every night and it is the only way I'm not in constant pain.
I worked with a pain specialist who is in Bethesda, MD. I stopped seeing him because he wouldn't believe I had Lyme and insisted on a fibromyalgia diagnosis. But he was the first person to take my pain seriously and I really do owe the pain control to him. Send me a personal message if you want his info.
Posted by Shae (Member # 9442) on :
The pain in shae's feet is nuerological pain. Thats the one thing we are sure of.
Posted by Aniek (Member # 5374) on :
Some of my foot pain is referred pain. It is pain from nerves, but the direct cause is that muscles in my hip area are so tight that they compress the sciatic nerve. Myofascial release helps this, along with the Flexeril I take.
I did try Neurontin, but I couldn't get too a high enough dose because it made me too tired in combination with the Flexeril.
Posted by lymie tony z (Member # 5130) on :
Here's a couple of things I used to alleviate my burning foot pain when it was more severe...
I think it distressing that the best the ducks can come up with is "burning foot syndrome"
A more accurate description would be "Raynauds" which lyme is mimicking...
I actually used icewater foot soaks to numb out the nerves that caused the pain...I would need to do three or four a night...before I would get any long lasting relief to permit sleep.
I also got a tens machine and placed the terminal pads on a couple accupressure points on the feet as well as just putting them on the soles of my feet.
I also gained some relief from using the electrodes criss crossed on my lower back...this interrupts the pain signal to and from the brain/spinal collumn.
I got some relief from caudal blocks which were given to me for excruciating ridiculating hip pain after my first total knee replacement.
All that neurontin and ammitryptiline never helped...neither did gabapentin or topiromate...or effexeril...and etc's
I still get burning feet at night...not nearly as hot or painful and I can tolerate this symptom.
Good luck...you may want to try flagyl...the funny thing about flagyl is that it can cause neuropathy...but if she already has neuropathy pain the flagyl may reduce the pain...
It did in my case anywho......zman
Posted by lymemomtooo (Member # 5396) on :
Shae, good luck..You are embarking on a bumpy journey but maybe the one to find the most help..
Remember with the abx problem, what has been said..It is a pretty good barometer of one of these diseases or another neurotoxin..The reaction may have been a herxheimer..It indicates a reaction from the meds and the die off of bacteria.
It can happen often with these diseases and sometimes, you may become worse while under treatment..Do not let it get too much worse without contacting a DR
Also you may have a dilemma with the steroids..They tend to suppress the immune system or the immune response and to fight lyme disease you really need as much of it to work as possible.
You have received some wonderful advise from Carol and those that have responded..
As a mother I know your pain and pray something soon turns a corner..lymemomtooo
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