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Will any1 help me? Nerves Damage, Pathogen, Autoimmune, Cancer, Chronic EBV,
Please anyone someone help I am lsing my medical coverage soon and need some answers. I went from being 160 lbs to 115 and have had 5 oral surgeries, before I have another one I need answers please!
I lived in a rural community and four years ago, I had a dental filling done imroperly, yes a dental filling started a snowball thats a avalnche. Failed root canal, cyst improperly removed, with no antibiotics at the time. Then Avelox, shot of Rochephin, then 72 hrs later horrible fever and sickness, treated with collidial silver. I trusted the wrong Dr. now, 5 oral surgeries later, am in need of another one. Bone graft in the jawbone and being told I need a major jaw reconstruction. I will give the cliff notes version. Been through many specialties and have so many issues I'll tell you what I can remember.
Have had PICC lines and I.v meds. Envanz (emitriptin)? Vorcanazole, rocephin 14 days piggy back, EVERY class of oral antibiotics except Vincya. Also, I have a neighbor who is VERY ill worse than me cancer survivor. She rcv. Vincaymycin for supposed "endocardidtis" Both of us are being jerked around, pushed off, left for dead. WE HAVN'T DIED, THANK GOD I AM ON A Mission.
SO, currently I have diagnosed with and suffer from:
atypical Trigeminal nuralgia, Cronic EBV, Kidney Issues (recently) following a, VERY HIGH IGM level, amenima (that has come and gone,for myself and my friend) TMJ ( previous), damage to 5 cranial nerves, optic neuropathy, was told possible endocardidits, taccychardia, Celiac disease, had to have endometrial biopsy? a to why, shortness of breath, Unilateral edema, yes, been told its impossible foot and handswole up like a balloon, pain and swelling in lymphs, tingling and numbness in limbs, extreme fatigue, doccumented heptomegly of liver and spleen, um...sweilling of the face and neck, frequent puss like lesions in my throat( cultured not strep, bacterial and viral negative) dizzyness, falling out, damage to heart valves, many negative tests but no answers. I can NOT gain weight, night sweats, intermitten fevers, weight loss of over 30 lbs, with no sucess of weight gain regardless of nutition good and bad. Black eye ( on the side of my face that has issues) cronic sinuisitis, cysts on breast, ovaries( friend) kidney myself, abnormal high and low blood pressure., memory loss, loss peferal vision, demylenizaion of optic nerve, hemifascial spasms, memrory loss, loss of congative abaility, suspected stroke, small superficial blood clot, B-12 deficency, HPV ( stage 1 ) colpo, cleared ?, Bone biopsy of one extracted tooth site reflected empty osseous lucuane, surrounded by granulation tissue, Pereferal blood smear results: anemia orgion uncertain, favors decreased bone marrow production...dru/toxin exposure/infection/neoplasia, nutritional deficiecny( i have great nutrtiton and take suppliments) chronic disease...wbc unremarkable, rbc has minimal anisopokiliocytosis w/ occasional elliptocytes, teardrop and polychromatic cells. Positive Mirobiology in mouth!! Also, in other pts in area C. freundii clpx Gram Negativie Bacilli Strep Pneumo. Suggested by microbiologist
Pepto strep.....anerobic bacteria Actincomycosis Isrealei, Atypical T.B.
osteophytosis on nfectious disease dr report, COXSACKIE A7-IGG high A-9 high a 16 high A 24 high, M PNEUMONIAE IGG ABS HIGH
COXSACKIE A7 IGG HIGH
COX............. A9 IGG HIGH
COX..............A16 IGG HIGH
COX..............A 24 HIGH
IGM'S NORMAL
M Pneumoniae IGG ABS huge high
M Pneumoniae IgM ABs minimal high
Negatives:
HIV, Hep A B C, Major General Oncology, nothing on blood cultures, Nuclear medicine, Normal TSH, 1 positive homonogenous ANA, other negatives, Herpes STD neg. Some fungalcultures, Rheumatoid Negthen slight positive,Esr usually low/normal, CRP usuallly low one or two normal, RPR non reactive, COXSAKIE IGM Neg quite a few more.......NO DR CAN TELL ME WHATS UP?
I am young, sickly, and am desperate for help
May be more can not think well please anyone can you help?
I lived in a rural community and four years ago, I had a dental filling done imroperly, yes a dental filling started a snowball thats a avalnche. Failed root canal, cyst improperly removed, with no antibiotics at the time. Then Avelox, shot of Rochephin, then 72 hrs later horrible fever and sickness, treated with collidial silver. I trusted the wrong Dr. now, 5 oral surgeries later, am in need of another one. Bone graft in the jawbone and being told I need a major jaw reconstruction. I will give the cliff notes version. Been through many specialties and have so many issues I'll tell you what I can remember.
Have had PICC lines and I.v meds. Envanz (emitriptin)? Vorcanazole, rocephin 14 days piggy back, EVERY class of oral antibiotics except Vincya. Also, I have a neighbor who is VERY ill worse than me cancer survivor. She rcv. Vincaymycin for supposed "endocardidtis" Both of us are being jerked around, pushed off, left for dead. WE HAVN'T DIED, THANK GOD I AM ON A Mission.
SO, currently I have diagnosed with and suffer from:
atypical Trigeminal nuralgia, Cronic EBV, Kidney Issues (recently) following a, VERY HIGH IGM level, amenima (that has come and gone,for myself and my friend) TMJ ( previous), damage to 5 cranial nerves, optic neuropathy, was told possible endocardidits, taccychardia, Celiac disease, had to have endometrial biopsy? a to why, shortness of breath, Unilateral edema, yes, been told its impossible foot and handswole up like a balloon, pain and swelling in lymphs, tingling and numbness in limbs, extreme fatigue, doccumented heptomegly of liver and spleen, um...sweilling of the face and neck, frequent puss like lesions in my throat( cultured not strep, bacterial and viral negative) dizzyness, falling out, damage to heart valves, many negative tests but no answers. I can NOT gain weight, night sweats, intermitten fevers, weight loss of over 30 lbs, with no sucess of weight gain regardless of nutition good and bad. Black eye ( on the side of my face that has issues) cronic sinuisitis, cysts on breast, ovaries( friend) kidney myself, abnormal high and low blood pressure., memory loss, loss peferal vision, demylenizaion of optic nerve, hemifascial spasms, memrory loss, loss of congative abaility, suspected stroke, small superficial blood clot, B-12 deficency, HPV ( stage 1 ) colpo, cleared ?, Bone biopsy of one extracted tooth site reflected empty osseous lucuane, surrounded by granulation tissue, Pereferal blood smear results: anemia orgion uncertain, favors decreased bone marrow production...dru/toxin exposure/infection/neoplasia, nutritional deficiecny( i have great nutrtiton and take suppliments) chronic disease...wbc unremarkable, rbc has minimal anisopokiliocytosis w/ occasional elliptocytes, teardrop and polychromatic cells. Positive Mirobiology in mouth!! Also, in other pts in area C. freundii clpx Gram Negativie Bacilli Strep Pneumo. Suggested by microbiologist
Pepto strep.....anerobic bacteria Actincomycosis Isrealei, Atypical T.B.
osteophytosis on nfectious disease dr report, COXSACKIE A7-IGG high A-9 high a 16 high A 24 high, M PNEUMONIAE IGG ABS HIGH
COXSACKIE A7 IGG HIGH
COX............. A9 IGG HIGH
COX..............A16 IGG HIGH
COX..............A 24 HIGH
IGM'S NORMAL
M Pneumoniae IGG ABS huge high
M Pneumoniae IgM ABs minimal high
Negatives:
HIV, Hep A B C, Major General Oncology, nothing on blood cultures, Nuclear medicine, Normal TSH, 1 positive homonogenous ANA, other negatives, Herpes STD neg. Some fungalcultures, Rheumatoid Negthen slight positive,Esr usually low/normal, CRP usuallly low one or two normal, RPR non reactive, COXSAKIE IGM Neg quite a few more.......NO DR CAN TELL ME WHATS UP?
I am young, sickly, and am desperate for help
May be more can not think well please anyone can you help?
You are very welcome! I'm blessed to be of help!
Do you have COBRA coverage you could apply for? (See private message)
Do you have COBRA coverage you could apply for? (See private message)
WOW thanks that really does help as I have to sit down and discuss my file with the hospital. I am on a govt. care program, due to the fact that I lost my job with insurance and the state I live in is re-structuring the healthcare. I can not thank you enough for the organization suggestions. Will reply with more specifics to your ? tomorrow WOW Thank you very mucho!
Part three response:
A. Since you have chronic Epstein-Barr virus, have they looked for other reasons for chronic sickness and also, since you have much fatigue, have you been evaluated to see if you have chronic fatigue syndrome?
B. With the very high IGM, did they determine the source of infection and what was infected... noticed you later list normal IGMs- so the infection treated was successfully eliminated, is that correct? How have your kidneys been affected specifically?
C. Has a hematologist been diligent to follow up with you, given your multiple issues? Are they treating your various anemias and if so, how?
D. With your celiac disease, which can lead to nutritional deficiencies with decreased absorption in your GI tract, have you been treating it with strict dietary measures?
E. Have you been told what type of tachycardia you have? Is your shortness of breath coming in association with your rapid heart rate? Did you know that iron deficiency can cause rapid heart rate, shortness of breath, and dizziness? Did you know that your catecholamines may be kicking in to high gear (epinephrine and norepinephrine), speeding up your heart rate to try to raise your blood pressure prevent you from passing out?
A. Since you have chronic Epstein-Barr virus, have they looked for other reasons for chronic sickness and also, since you have much fatigue, have you been evaluated to see if you have chronic fatigue syndrome?
B. With the very high IGM, did they determine the source of infection and what was infected... noticed you later list normal IGMs- so the infection treated was successfully eliminated, is that correct? How have your kidneys been affected specifically?
C. Has a hematologist been diligent to follow up with you, given your multiple issues? Are they treating your various anemias and if so, how?
D. With your celiac disease, which can lead to nutritional deficiencies with decreased absorption in your GI tract, have you been treating it with strict dietary measures?
E. Have you been told what type of tachycardia you have? Is your shortness of breath coming in association with your rapid heart rate? Did you know that iron deficiency can cause rapid heart rate, shortness of breath, and dizziness? Did you know that your catecholamines may be kicking in to high gear (epinephrine and norepinephrine), speeding up your heart rate to try to raise your blood pressure prevent you from passing out?
Who is telling you you need major jaw reconstruction? Is it a doctor you trust?
Have you been hunting for another oral and maxillofacial surgeon?
Have you been told your atypical trigeminal neuralgia has to do with your TMJ and jaw bone issues?
Are you taking medication for the the nerve pain in your face?
To be continued...
With all the jaw surgeries you've already had, did you lose any of the weight because your diet was restricted by pain and mouth opening?
Was the damage to five cranial nerves and optic neuropathy caused by your jaw surgeries?
Have you been hunting for another oral and maxillofacial surgeon?
Have you been told your atypical trigeminal neuralgia has to do with your TMJ and jaw bone issues?
Are you taking medication for the the nerve pain in your face?
To be continued...
With all the jaw surgeries you've already had, did you lose any of the weight because your diet was restricted by pain and mouth opening?
Was the damage to five cranial nerves and optic neuropathy caused by your jaw surgeries?
I'm sorry you've had a very difficult time of it physically with so many problems.
First goal would be to try to get your medical insurance situation squared away- why is your coverage about to end?
Secondly, you need to organize on paper if you haven't already:
Each diagnosis- put the priority ones you want to be addressed first at the top of your list.
On another page, put a list of problems that have already been addressed and outline how they were addressed.
On a third page, list all surgeries you have had in chronological order.
On a forth page, list all current medications you are on and beneath that, list all medications you are allergic to and what reaction you had.
Doctors have limited time as you've likely often experienced, so being organized with your medical history is important. Limiting each appointment to two or three issues would also probably be wise for their focus.
To be continued...
First goal would be to try to get your medical insurance situation squared away- why is your coverage about to end?
Secondly, you need to organize on paper if you haven't already:
Each diagnosis- put the priority ones you want to be addressed first at the top of your list.
On another page, put a list of problems that have already been addressed and outline how they were addressed.
On a third page, list all surgeries you have had in chronological order.
On a forth page, list all current medications you are on and beneath that, list all medications you are allergic to and what reaction you had.
Doctors have limited time as you've likely often experienced, so being organized with your medical history is important. Limiting each appointment to two or three issues would also probably be wise for their focus.
To be continued...
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