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Immune Mystery
I need help finding out what is wrong with me. I have been to several doctors over the past 9 months and nobody has been able to figure out what is wrong. All the doctors agree there is something definately wrong, but have not figured it out. I have literally had dozens of tests. Two main symptoms are painfull exessive swelling of multiple joints to the point of immobility, knee, big toes, ankles. Intestinal issues are loose stools, diarrhea, anal fissures(past), abdominal pain, gerd, mouth ulcers. As well i have fatigue, and experience very bad unexplained muscle pain in the arm, legs, and back. calf muscles extending to achiles tendon being the worst. I have been told that i DO NOT HAVE: crohns, lyme, lupus, celiac, behcets. I am really scared of this condition, not knowing what it is is making things worse. Most recent doctor treating me believes i may have lyme and has sent a western blot off, with no posetive elisia. She also believes that my immune system may be reacting to some sort of insult in my body, and that i may have some form of IBD. Any ideas, suggestions, advice would be greatly appreciated. I can provide a list of all diagnostic tests and procedures if necessary
I will probably message you within the next few days with more specific questions about your journey with Lyme. I am really tired tonight, lol. I can't think of the right questions. I want to talk more about the diagnostic tests you and your husband had.
Thank you, both of you for the long posts on Lyme Disease. I have been seeing a lyme specialist out of Maryland since the start of the summer but my treatments have been tricky due to complications. I spoke with my Lyme doctor today who finally got my Igenex results back, which were equivocal... so something showed up but not enough to call it posetive. I will be repeating these tests in a few week. I have already been put on medication for Babesia, which my doctor thought i probably had. My lyme doctor is also going to run more bloodwork related to immune diseases, repeat my ana, sed rates, and blood counts... she will be looking into any other tests that may help with the diagnosis. She still suspects Lyme strongly but she believes that the lyme bacteria may have triggered something else. Immune disease runs in my family slightly. I have done extensive research into Lyme, ive read all the books, read every bit of the websites, ive read dr. burascono's treatment guide, ive seen Under Our Skin. My gut tells me this is either definately Lyme, or definately Lupus. I have been going on these forums trying to get Lupus' patients opinions and such because I really believe that in alot of these cases patients know more about the disease than doctors do. It is scary for me to let somebody (my doctor) treat me with such strong anti-biotics simply because if i don't have Lyme, the antibiotics are going to worsen the condition of my immune system with no benefit. After we repeat my ana, sed rate etc. my Lyme doctor is going to put me on intramuscular antibiotic injections to see what happens. Another thing that makes me suspect lyme strongly is that when i start the antibiotics i get 5x sicker immediately, this is known as a Herxiemer reaction in Lyme patients. I have also scheduled another appointment with a rheumatologist whom i saw twice about 7 months ago.
One last thing. I read that you are having mental disturbances. We have that too. Short term, long memory problems. You feel like your getting Alzheimer's. We also suffer from vision problems and much more.
If you go to LymeNet.org you can search for a lyme literate doctor of lyme specialist. Some take insurance and some do not.
No matter what anyone tells you, you do not have to have a bulls eye rash to have lyme disease.
You should also watch the movie Under Our Skin. It is a documentary about lyme disease, how it's epidemic, misdiagnosed, has very poor reliable testing and pretty much ignored by the medical society. My husband, myself and my son are on a long road of antibiotics, supplements, and a low glycemic, high fiber diet to get rid of this disease.
I went to a rheumatologist for my condition and was told I have fibromyalgia and an elevated rheumatoid factor almost 2 years ago. My rheumatologist wanted to put me on anti-depressants, pain medication and auto-immune suppressants so I wouldn't get rheumatoid arthritis. I don't have rheumatoid arthritis to this day and have controlled my pain through diet and supplements. Steroids and auto-immune suppressants will destroy your only chance of surviving this disease. They will lower your immunity and the virus will take over. You should start helping your immune system fight the disease by taking supplements that support your immune system and adrenals. Doing this has helped us quite a bit. Good Luck to you. It is a long journey.
If you go to LymeNet.org you can search for a lyme literate doctor of lyme specialist. Some take insurance and some do not.
No matter what anyone tells you, you do not have to have a bulls eye rash to have lyme disease.
You should also watch the movie Under Our Skin. It is a documentary about lyme disease, how it's epidemic, misdiagnosed, has very poor reliable testing and pretty much ignored by the medical society. My husband, myself and my son are on a long road of antibiotics, supplements, and a low glycemic, high fiber diet to get rid of this disease.
I went to a rheumatologist for my condition and was told I have fibromyalgia and an elevated rheumatoid factor almost 2 years ago. My rheumatologist wanted to put me on anti-depressants, pain medication and auto-immune suppressants so I wouldn't get rheumatoid arthritis. I don't have rheumatoid arthritis to this day and have controlled my pain through diet and supplements. Steroids and auto-immune suppressants will destroy your only chance of surviving this disease. They will lower your immunity and the virus will take over. You should start helping your immune system fight the disease by taking supplements that support your immune system and adrenals. Doing this has helped us quite a bit. Good Luck to you. It is a long journey.
I read your post and wanted to see if I could help. My husband has a very similar condition as you. He is 45,5'6", 150bls., eats very healthy and is very athletic. He suffers with a blister like rash on his fingers that come and go, IBS, hair loss on head, arms and lower legs, joint pain in knee and shoulder, lower back pain, muscle twitching and cramps, headaches, neck stiffness and pain, mouth sores, rash on abdomen that comes and goes (haven't seen it for a while), chronic fatigue ( can never sleep enough), restless sleep, tight muscles, muscle weakness, muscle pain, soles of feet have pain, vision is one eye went bad over night, at times a rapid heart rate and more. We went to an endocrinologist and he was tested and found to be pre diabetic with hypoglycemia. The doctor also said that his good cholesterol was below normal and his bad was above normal. Along with him having this condition I (his wife) and his son (19) also have similar problems. We all suffer from blood sugar issues, cholesterol issues and poss. thyroid issues. The thyroid blood levels were all high normal and we all suffer with symptoms of a thyroid problem. Our endocrinologist recommended that we all get checked for lyme disease and any co-infections. We went to a lyme specialist and got tested. Our results came back inconclusive and my husband showed signs of having been exposed to lyme. We were all put on antibiotics (doxycycline) for a month. We will then get retested to see if we have positive results for lyme or co-infections. We have been on the antibiotics for a week and already see mild improvement. Lyme disease along with it's co-infections is what you should definitely be looking into. These bacteria effect everyone so differently and they mimic so many other illnesses. They run havoc on the endocrine system setting you up for low thyroid, blood sugar problems, digestion problems and adrenal fatigue. One test you should have done is a 3 hr. glucose test with insulin draw every hour. My husband is now able to control his diarrhea by not ingesting any sugar and only eating small amount of complex carbs. He can also not eat dairy unless lactose free (in moderation), some fruits or pasta. The diarrhea has something to do with the digestion of sugar. If you need any help you can message me.
Sorry for taking so long. Our family goes camping in October. I'm back now.
When I look at your symptoms, I see so many lupus symptoms. I know with myself, the symtpoms were not all screeming at first. Well, the joint pain and fatigue was. But like the rash was not. I think it was because I felt soooo bad that I didn't go outside. When I spent time in the sun prior to my ANA being tested is when things became very evident.
Here is a list of symptoms for tick borne illnesses: I will try to send the symptoms of lupus on a different post. (I'm on the wrong computer)
Lyme:
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
Bartonellosis:
Common symptoms of bartonellosis include:
___Fatigue (often with agitation, unlike Lyme disease, which is more exhaustion)
___Low grade fevers, especially morning and/or late afternoon, often associated with feelings of "coming down with the flu or a virus"
___Sweats, often morning or late afternoon (sometimes at night) - often described as "thick" or "sticky" in nature
___Headaches, especially frontal (often confused with sinus) or on top of head
___Eye symptoms including episodes of blurred vision, red eyes, dry eyes
___Ringing in the ears (tinnitus) and sometimes hearing problems (decreased or even increased sensitivity - so-called hyperacusis)
___Sore throats (recurring)
___Swollen glands, especially neck and under arms
___Anxiety and worry attacks; others perceive as "very anxious"
___Episodes of confusion and disorientation that are usually transient (and very scary); often can be seizure-like in nature
___Poor sleep (especially difficulty falling asleep); poor sleep quality
___Joint pain and stiffness (often both Left and Right sides as opposed to Lyme which is often on one side only with pain and stiffness that changes locations)
___Muscle pains especially the calves; may be twitching and cramping also
___Foot pain, more in the morning involving the heels or soles of the feet (sometimes misdiagnosed as plantar fasciitis)
___Nerve irritation symptoms which can be described as burning, vibrating, numb, shooting, etc.
___Tremors and/or muscle twitching
___Heart palpitations and strange chest pains
___Episodes of breathlessness
___Strange rashes recurring on the body often, red stretch marks, and peculiar tender lumps and nodules along the sides of the legs or arms, spider veins
___Gastrointestinal symptoms, abdominal pain and acid reflux
___Shin bone pain and tenderness
Bartonella is a bacterium that causes illness, the most commonly known of which is a disease called "Cat Scratch Fever." Thousands of known cases of Bartonella occur in the U.S. each Year, with the vast majority of known cases due to bites from fleas that infest cats or infected dogs (may also occur directly from bites and scratches from infected dogs or cats). Bartonella can also be transmitted by ticks that transmit Lyme Disease. In fact, in a study published recently, deer ticks from New Jersey had a higher prevalence of Bartonella organisms than of Lyme organisms.
It is unclear whether the organism that we see transmitted along with Lyme disease is actually a Bartonella species (such as B. henselae or B. quintana) or is "Bartonella-Like Organism" (BLO) that is yet to be fully identified. While BLO has features similar to organisms in the Bartonella family, it also has features slimiar to the Mycoplasma and the Francisella (causes tularemia) families.
_________________
Babesiosis
As with other co-infections, there is a lot of overlap of symptoms between Lyme disease and Babesiosis. An accumulation of the following signs and symptoms probably warrant testing and/or treatment of Babesiosis:
___Chills
___Fatigue and often excessive sleepiness
___High fever at onset of illness
___Night sweats that are often drenching and profuse
___Severe muscle pains, especially the large muscles of the legs (quads, buttocks, etc.)
___Neurological symptoms often described as "dizzy, tipsy, and spaciness," similar to a sensation of "floating" or "walking off the top of a mountain onto a cloud"
___Depression
___Episodes of breathlessness, "air hunger", and/or cough
___Decreased appetite and/or nausea
___Spleen and/or liver enlargement
___Abnormal labs (low white blood count, low platelet counts, mild elevation of liver enzymes, and elevated sed rate)
___Headaches (migraine-like, persistent, and especially involving the back of the head and upper neck areas)
___Joint pain (more common with Lyme and Bartonella)
___Anxiety/panic (more common with Bartonella)
___Lymph gland swelling (more common with Bartonella and Lyme)
When I look at your symptoms, I see so many lupus symptoms. I know with myself, the symtpoms were not all screeming at first. Well, the joint pain and fatigue was. But like the rash was not. I think it was because I felt soooo bad that I didn't go outside. When I spent time in the sun prior to my ANA being tested is when things became very evident.
Here is a list of symptoms for tick borne illnesses: I will try to send the symptoms of lupus on a different post. (I'm on the wrong computer)
Lyme:
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
Bartonellosis:
Common symptoms of bartonellosis include:
___Fatigue (often with agitation, unlike Lyme disease, which is more exhaustion)
___Low grade fevers, especially morning and/or late afternoon, often associated with feelings of "coming down with the flu or a virus"
___Sweats, often morning or late afternoon (sometimes at night) - often described as "thick" or "sticky" in nature
___Headaches, especially frontal (often confused with sinus) or on top of head
___Eye symptoms including episodes of blurred vision, red eyes, dry eyes
___Ringing in the ears (tinnitus) and sometimes hearing problems (decreased or even increased sensitivity - so-called hyperacusis)
___Sore throats (recurring)
___Swollen glands, especially neck and under arms
___Anxiety and worry attacks; others perceive as "very anxious"
___Episodes of confusion and disorientation that are usually transient (and very scary); often can be seizure-like in nature
___Poor sleep (especially difficulty falling asleep); poor sleep quality
___Joint pain and stiffness (often both Left and Right sides as opposed to Lyme which is often on one side only with pain and stiffness that changes locations)
___Muscle pains especially the calves; may be twitching and cramping also
___Foot pain, more in the morning involving the heels or soles of the feet (sometimes misdiagnosed as plantar fasciitis)
___Nerve irritation symptoms which can be described as burning, vibrating, numb, shooting, etc.
___Tremors and/or muscle twitching
___Heart palpitations and strange chest pains
___Episodes of breathlessness
___Strange rashes recurring on the body often, red stretch marks, and peculiar tender lumps and nodules along the sides of the legs or arms, spider veins
___Gastrointestinal symptoms, abdominal pain and acid reflux
___Shin bone pain and tenderness
Bartonella is a bacterium that causes illness, the most commonly known of which is a disease called "Cat Scratch Fever." Thousands of known cases of Bartonella occur in the U.S. each Year, with the vast majority of known cases due to bites from fleas that infest cats or infected dogs (may also occur directly from bites and scratches from infected dogs or cats). Bartonella can also be transmitted by ticks that transmit Lyme Disease. In fact, in a study published recently, deer ticks from New Jersey had a higher prevalence of Bartonella organisms than of Lyme organisms.
It is unclear whether the organism that we see transmitted along with Lyme disease is actually a Bartonella species (such as B. henselae or B. quintana) or is "Bartonella-Like Organism" (BLO) that is yet to be fully identified. While BLO has features similar to organisms in the Bartonella family, it also has features slimiar to the Mycoplasma and the Francisella (causes tularemia) families.
_________________
Babesiosis
As with other co-infections, there is a lot of overlap of symptoms between Lyme disease and Babesiosis. An accumulation of the following signs and symptoms probably warrant testing and/or treatment of Babesiosis:
___Chills
___Fatigue and often excessive sleepiness
___High fever at onset of illness
___Night sweats that are often drenching and profuse
___Severe muscle pains, especially the large muscles of the legs (quads, buttocks, etc.)
___Neurological symptoms often described as "dizzy, tipsy, and spaciness," similar to a sensation of "floating" or "walking off the top of a mountain onto a cloud"
___Depression
___Episodes of breathlessness, "air hunger", and/or cough
___Decreased appetite and/or nausea
___Spleen and/or liver enlargement
___Abnormal labs (low white blood count, low platelet counts, mild elevation of liver enzymes, and elevated sed rate)
___Headaches (migraine-like, persistent, and especially involving the back of the head and upper neck areas)
___Joint pain (more common with Lyme and Bartonella)
___Anxiety/panic (more common with Bartonella)
___Lymph gland swelling (more common with Bartonella and Lyme)
thank you, i checked that out. unfortunately that doesnt really sound like me. there are some of my symptoms on that list but it excludes some of my main ones also. ive found that i can look up almost any immune issue and find some of my symptoms on every problem, disease, condition. my most recent doctor who i thought was going to be a big help has refused to release my last set of tests results to me and i do not know why. i am really upset and angry because i am comming out of a month long remission. after 10 months, i was almost symptom free for a whole month, that changed 2 weeks ago though. i have contacted the UPENN hospital and requested an appointment with one of their rheumatologist specialists, i am starting to have mental disturbances that are concerning me. thank you so much for all of your help, suggestions and your prayers. good luck to you in life. =)
-Danica
-Danica
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