Mystery Illness And Pain In Florida, I Need Help!

Updated

Since i was 16 I have been suffering from some type of condition or illness that I have not been able to get any answers for, and every year the pain and symptoms have gotten worse. It started after a camping trip i took in Central FL near Lake Wales. When i was driving back i noticed a rash completely covering my right leg but not foot or thigh just calve. I thought nothing of it because it neither itched nor hurt. I went to sleep and woke up to notice the rash was gone from my leg and i was relieved but then i went to take a shower and discovered the rash had moved to my stomach and ab region. Again weird but no pain or anything. It went away the next day.

Then two or three weeks later i got really sick and all my lymph node is swelled on the upper half of my body and i had sharp stomach pain and headaches and fatigue. Went to urgent care and they said it was just an infection and gave me a round of antibiotics. That cleared up and i felt better a week and a half later, but then i started having extreme anxiety and panic attacks. And especially after I smoked marijuana (which I had to quit because after smoking i would get extreme anxiety, panic and even stomach and chest pain) which i thought was weird. I also started to get hungry a lot and begin to have cravings for meat. The first symptoms were stabbing pains in stomach. Felt like 1000 ants were biting my abs at the same time, also extreme fatigue, and horrible migraines. These symptoms persisted, but after a year the biting sensation was gone but the sharp stabbing pain was still there and worse.

And then every year things would get worse and maybe I would have a new symptom. I'm 33 now and it is so bad that unless I take a half a xanax at least a day my pain is at a constant 7-8 and flares of 9 and 10 and I'm bed ridden without the xanax cause the pain is just horrible. I also take one Dilaudid per day for the pain. But I'm self medicating and I hate it. I only take one xanax a day tops, and also only one Dilaudid per day because I don't want to become dependent. But even that only gets my pain to a bearable 4 or 5 and the symptoms and pain are driving me crazy.

Please help this uninsured desperate fool because I just want answers and to be treated properly and to stop self medicating!

Symptoms: Stomach pains/cramps, loss of appetite, sharp flaring pains all over body, extreme bone pain, chest bone pain and tenderness, joint pain/swelling, extreme muscle spasms all over body, spinal spasms so bad they can wake me, extreme migraines, eye pain, ear pain, jaw pain, extreme fatigue/lethargy, cramps and muscles or bones lock sometimes, anxiety and mood swings, toxic feeling, even have spasms and pain in groin area and privates, depression (Probably because of all the pain). I know it has nothing to do with drugs or withdrawals because first two years I didn't self medicate at all and remained at home for basically the whole 2 years isolating myself from everything and everyone because I was scared and didn't feel right, but still had symptoms and they were getting worse.

Then recently I was incarcerated for 6 months completely sober and could barely function or get out of bed, and during and after the symptoms got even more severe - and that is why I'm basically bed ridden now without my meds, and even that just gets me to a functional 4 on the pain scale. But getting a doctor or treatment in prison takes forever and they only checked for Lyme, and when that was clear they treated me like s*** and said to get out and exercise and it's probably just all in my head. And now I have no insurance and I'm stuck. When I go to the ER they do basic diagnostics and x-rays and basically treat me like a drug seeker even though I tell them I want no drugs and am honest about my self medicating, and I tell them I just want a damn answer.

But their diagnostics come back and nothing emergent shows so they release me feeling no better. My white blood cell count always comes back elevated though, and has since I went on that camping trip. Please help me. I don't know what to do, who to talk to, where to go. I'm 33 and I have had to move back home because it's just to hard to live alone and I hate being a burden on my elderly parents. I should be taking care of them not them supporting and taking care of me.

Ohhhh, another symptom I forgot to mention is memory problems. I have two degrees in computers and I can barely remember anything I learned. Forget names sometimes, places and I fog up sometimes and go blank like a computer that is frozen and then a few seconds later I'm back like i rebooted. It's the weirdest feeling. Please anything you can offer will help. Doctors names in South FL, resources, how I can get insurance or get proper medical help free or really anything. I just want and know I need help. Thank you for reading this and being so patient. Have a great day and may your beliefs protect you from all that would ail you or cause you harm. God bless!

19 Replies

Earliest Newest Votes
1

Bump! Can someone pls read this and reply. Really need help.

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2

Encephalitis, Rabies, West Nile?? Florida is the land of diseases and you must have caught something there. I'd contact professionals in that area and see if they have any resources or clues for you

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3

I would first check the services of DHS and go from there. They have a list of resources to help you with. I'm not sure about getting you free medical insurance, but this last few yrs, there was an expansion of Medicaid, and you should have been able to access that with no income open to you. Now it might be harder, if not impossible. But there are places I'm sure of no cost to you, once you can tap into them. If you have something "possibly infectious", DHS would send you for medical care.

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4

Firstly if your white count is elevated it's biological not in your head. Might want to get tested for parasites. Tropical disease specialist might be the ticket. Might want to research medical sites or call the CDC and see if they have any info or leads who to talk to or see.

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5

I know someone that had Lyme. There are over 100 strains of Lyme and they only test for a couple. After a couple of years, he finally found a doctor that thought he had Lyme even though the test always came back negative. The doctor put him on a high antibiotic regiment and he finally started to fill better. He was in so much pain he would do anything. It took along time but he did get better. He's back to lifting. Be encouraged.

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6

Without insurance I have no idea of how to get a proper diagnosis. It actually sounds like a parasite to me. I am not a doctor. Too bad Dr House is only on TV.

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7

I would have to definitely agree about the parasites!! Knew of something similar she went on a cruise ate the food there and then started suffering minor symptoms shortly after and it became progressively worse 2 years later. It's a process of elimination I'm sad to say. Spinal tap, stool culture, and blood cultures. You definitely have something going on. However, physical stress due to pain can bring upon a myriad of other health problems. Infectious disease has to act, as required by law- regardless of insurance status. Did you see a Doctor Who will be thorough and run the above mentioned test and do the other suggestions that were mentioned previously from the other responses then just trying to be patient and wait for the results. My prayers are with you!!!!

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8

Also, lymph nodes are swollen because it's the body's response to infection, hence elevated white blood cell count. So your body is trying to fight off something which isn't viral.

Your groin is hurting because you have lymph nodes there as well they are located in your neck and your arms and in your groin area. Try to stick with drinking bottled water if possible and let me know if by any chance they gave you medicine by the name of Cipro and Flagyl Those are used to fight parasites. I hope this helps.

Was this helpful? 2
9

I agree with EDDY... A doctor familiar with Florida and all the critters in the water down there. Some are multi celled organisms and others are single cell. The migrating irritated skin could be either but I would start with the single cell culprits based on the skin symptoms but a medical professional would know more than me. CDC and infectious disease control as Cheyena mentioned.

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10

Try a vascular specialist. Sounds like you have more than one thing. I would also ask them to test for parasites if the vascular issues come back negative. Have you also tried an endocrinologist? Family member had pain all summer, and it ended up to be blocked arteries in the abdomen.It took a long time to find, as the arteries did not show up in the ultrasound as they were almost 100 percent blocked.

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11

Get checked for leukemia! Asap! My dad had all those same symptoms and his Dr ignored him! 3 years later a Dr at the VA listened and he's now getting treatment. Sounds like CLL OR SLL. Please find do a new dr! Apply for Insirance thru your state offices. I'm concerned. Best wishes and keep me posted.

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12

Lyme disease mate . Look for a doctor that will test you for it . Don't stop till you get one.

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13

Look into Morgellons your symptoms sound a lot like mine! Go on u tube you will find morgellons it's hell !
Wish you luck

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14

Try drinking a Boatload of TEA see if you get any relief and look into reverse osmosis

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15

Hi Jonathan,

I'm not a doctor and don't claim to be but, I have had a few friends with your symptoms etc. I live in the Northeast. I'm from Connecticut where Lyme, unfortunately is a common first thought of when out in nature, getting the rash and all the other symptoms. Along with that I have learned of other Lyme type illnesses that took a very long time for my friend's husband to get diagnosed. He had babysiosis, he was given the proper medications, time to recover and is perfectly fine now. I listed below a couple links for you to check out. Keep reading even if it doesn't mention your exact symptoms. A couple of these have a list of similar parasitic illnesses that are all related. Hope this helps in some way. Keep us posted. Good Luck!

columbia-lyme.org/patients/tbd_babesia.html

cdc.gov/parasites/babesiosis/gen_info/faqs.html

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16

OMG GUYS THANKS FOR ALL OF THE CONCERN AND ESPECIALLY FOR BELIEVING ME. Because that really means a lot because for so many years people telling you it's all in your head and buck up chap and be a man. I was an all star football player and played a whole game after I broke my arm in the 5th play of the first quarter and still made 3 sacks and 21 tackles. So I can take pain and dish it out but this pain just absolutely floors me and it's internal so if anyone knows and I'm sure a lot if not most off you do, internal pain hurts a lot more and comes with the added benefit of making one feel absolutely powerless and that feeling is debilitating. Thank you guys. So what steps should I take first? Contact the CDC, go to ER or try to get Medicaid? I would go to a doc office but they all require payment upfront and that route is blocked with my monetary issues atm, lol. Just want to do this right. And my lymph nodes are no longer swollen, they were only swollen for a short period but I am sure the pain in those areas is from my nodes. You guys are awesome though and I am a lucky to have found this place. Thank you!

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17

Start by calling your county health dept. They should point you in the right direction.

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18

While this is very common in Florida you would want to contact the County in Florida as you were just visiting. Self medicating with Dilaudid is ridiculous, this is a medicine invited by Germany 100 years ago and is used for battle wounds and Cancer. You can go into a public free clinic or contact the CDC. Search online for similar complaints in the area

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19

Have you been checked for Lupus or some other autoimmune disease

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