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Bad pain and finially getting some help

Feb 05, 2016 7:53 PM

Lately things have been rough and that is why you haven't been seeing me days at a time. The Fibromyalgia has really been hurting me all over for the past few weeks and my pain meds haven't been working much. I asked the doctor to fill out the form for my free lyrica and she said she will mail it back to me but it has been a month and she still hasn't done it. I could really use a new source of relief as my insurance won't pay for it.

But the good thing is a finially found a doctor who has agreed that my problem does look like I have a problem with a parasite and he is doing some testing. I didn't even need to show him the pictures. He believed me. He said I dont present like someone who is delusional. In my reading it said most doctors accuse people with a parasite as being delusional. My primary care doctor wouldn't help me because he said I hadn't left the country. But I told him the CDC is showing their is a rise of new cases in the US with people who move in from other countries that don't have the best of conditions and if they work in food service, they can spread it. This is not a prejudicial statement, just what they said. Plus the they said it could spread from uncooked pork plus a carrier together to give you a whole body infection which is what my symptoms are like. He ran that test on me. But he said if the test came back negative, he will look at the pictures and then go from there. This is such a relief after having my doctors refusing to help me.

Feb 05, 2016 9:21 PM

That's great!! I'm so happy for you! It's so important to find a doctor you can really rely on. I wish it was easier to do that!
I hope you get treatment soon and get whatever it is out!!!!

Feb 06, 2016 12:28 AM

Please keep updating. I am hoping the parasite problem is resolved as soon as possible. I was worried when I read your earlier post about it. Take care and all the best.

Feb 06, 2016 2:28 AM

Dear Profiler, I wish to send you a hug the kind that gives you support without hurting you. I hope that the fibro pain decreases itself soon. I understand that it can be with you for long periods. It is exhausting. I am proud of you for advocating for yourself and getting a second thought about the parasite concern. Take care. Beets.

Feb 06, 2016 3:21 AM

I will be interested to hear how this pans out for you! Good luck

Feb 06, 2016 6:49 AM

I hope the best outcome on this issue for you. I'm so sorry you are in so much pain.

Feb 06, 2016 9:00 AM

I hope your pain levels out and the doctor can determine quickly if it's the parasite.

Feb 06, 2016 9:50 AM

Profiler, after all the agony that you have been going through with this parasite, I can't tell you how ecstatic I am for you that you finally found a doctor that knows you're having a problem and you're NOT delusional. Also that he is going to go ahead and test you further if the test comes back negative. Sounds like this guy is going to figure it out and eradicate you of these heinous parasites.. I'm so happy for you that I wish I could jump up and down for you (I'm doing it in my mind.. Does that count?) I'm sooooooo happy for you my dear friend. Sending lots of love, giant {{{{Hugs}}}} and prayers that they figure it out quick and get those things out of you forever!! 💕🙏🏻🌻😊

Feb 06, 2016 10:28 AM

I get pain free with cannabis. But i have to track dosing for it to work everyday. But my pain is mine and i hope you get better and let me know i will help with data on cannabis useage

Feb 06, 2016 10:43 AM

I'm so glad you found an understanding doctor, thank goodness! I hope you get answers from the testing, and that treatment begins asap.

Feb 06, 2016 12:49 PM

Finally a doctor with compassion empathy and a brain! You hit the lottery my friend. (Sad that this is not the normal we sll deserve quality care)I am very happy for you. I hope your parasite will soon be a bad memory. I think of you often and always hope the best for you.

Feb 07, 2016 1:05 PM

Thank you all for your empathy. It means a lot to me. I really try not to think about it. I do a pretty good job about it but I know it is there and no one wants anything in them especially when you can see them come out from time to time. Real small but magnified on my cell phone. It is very clear on my cell phone. You can actually see the hooks. There is something really wierd that happens to me though that I can't rap my head around and the doctor can't understand. He has never heard of it before. My parasite comes out of my skin. I have a picture of it but then it goes back in and there is no sore or opening. The skin looks normal. Plus, I have had 3 cuts over the past year. I have a video and pictures showing them look like the skin just instantly closing up and looking healed and then like five minutes later opening up again. It is really scary to me because I have never heard of that before. It sounds like something sci fi. But there has to be some type of explanation. Again thanks guys. I just hope they figure this out.

Feb 09, 2016 12:10 AM

When do the tests come back? I just keep checking in and see if you posted more about your condition and if it is improving. I hope so. Continued well wishes your way.

Feb 09, 2016 7:38 AM

Profiler, checking in to find out how things are going. I hope that you are getting some answers. It'd be interesting to see what those little buggers look like so you know what to look for. I hope your pain levels have decreased or the doc was able to give you something that works. As always, sending you lots of love, big {{Hugs}} and prayers that all is going well for you. 💕🙏🏻🌻

Feb 09, 2016 7:13 PM

Profiler, I'm so glad you have the support of this new doc. I oppose & pray he can identify the parasites quickly and treat it. I think about you every time they mention this new Zika virus. My hubby said Hawaii has a problem with dengue fever right now. With so many international travelers it's much easier for things to spread. Please keep us posted. I'm praying and trusting God's going to let this doctor find out what it is. Hugs!!🙂🙏💕🌼

Feb 10, 2016 9:24 PM

I got one test bact that I was sure was going to be positive. My symptoms were exactly like that and I felt inside sores just like it. But it came back negative. I was very disappointed because I was sure that is what it was. The strangest thing happened to me the other day, a part of my skin on my stomach changed the other day. It was like a line that raised like a hive then it turned blue. Then on on end, it developed a hole that was the length of an inch. And I don't know if I can call it a worm, but this thing came out of me that I think was alive. It moved and went up. It was black and looked tape. 2 of them came out a half an inch each. It came out like 3/4 of an inch then turned clear. Tape that is clear. Then I started hitting my stomach because I got scared and it turned into a liquid. But the liquid moved back into the hole and then the hole closed and the skin returned to normal. It is scary because it does not seem like that should be possible. I don't think I should be able to have a hole in my stomach on minute and then five minutes later the skin is closed. It just looks like I have an old scar. And it always happens in the same place. At least I have a good video of this happening. Before I just had picture but now I started doing videos recently. This should really help my cause. I have been getting scared lately because every now and then, I feel them around my neck. It usually starts off with tickling feeling around my neck. It never feels like crawling. But I can feel a difference. If I run the shower over my neck for a while, they will back off. It just scares me because I worry about them squeezing. But overall, I usually don't worry a lot about this. I have had to wait a year and a half to finially find a doctor who will listen. And he just ran a couple of test the other day. No we are going to decide where to go on my next appointment. But he said I do not act like a person with delusions. They made me feel good after my main doctor accused me of that. There main thing was unless I traveled, I can't have a parasite. The new doctor said that is not true.

Well I will keep you updated on what I find out. My next appointment is a week away. Thanks for asking guys. It is nice to know somebody cares. My brother and sister in law think I am crazy but they have never wanted to see the pictures. Take care and best wishes to all

Feb 11, 2016 12:21 AM

That is very scary. Do you have any pets? Have you had pets growing up or gone to a petting zoo? I hope the next Dr visit proves more fruitful and with the video proof it should help.I have lived in Malaysia and they always told me not to let my son walk barefoot because he can get worms that way. Also I think I remember them talking about tooth worms also. I did read in a traditional book that black seed oil kills worms if you rub it on your stomach but I can't remember if you heat it or mix it with something else for it to work. My friend has the book. Anyway healing thoughts your way.

Feb 11, 2016 5:17 AM

That is scary and no one would want to go through this. Then to be called delusional by docs and family makes it very lonely for you. So glad you found a doc who is working with you. I prayed for you.

Feb 11, 2016 1:25 PM

Thanks donamel for your prayer. Lit has been very lonely. What is sad is I have the video but it takes time for the whole process to start and finish. Maybe like seven and eight minutes.. They don't have the time for that or tell you they that that that they don't. Have time. Best wishes to you. For a lighter pain rain day.

Feb 14, 2016 8:44 PM

Profiler, indeed it is apparent to me you have a parasite.. They are difficult to diagnose, it has to be something specific they are testing for... Try contacting an infectious med doctor. They will be more skilled and experienced in these types of cases. I believe you..I have seen some things in ICU that would be considered crazy! And it was usually parasitic! So in the meanwhile, I know it is scary, and you are doing excellent documentation! Keep it up. Bring the doc your notes and pictures.. And no, you don't have to travel outside of the US to acquire some of these pesky little things! Please hang in there and hollar at me in the fire circle when you can. Love and Blessings, Terri

Feb 19, 2016 4:01 AM

Thanks Terri, what you said was very comforting to me. It is nice to hear someone's kindness on this matter because I don't get it from the doctors and I don't tell a lot of people because it sounds weird ad I think they will think I am crazy. I thought I was safe telling my family but that did not work out well for me. So thanks for your kind words.

Feb 19, 2016 4:17 AM

I've seen enough monsters inside me to know what you're describing is not only totally possible, but somewhat common. All it takes is interaction with unwashed produce from outside the country, or being scratched by a feral kitten, or something. It doesn't take much to get a parasite. sending positive vibes your way and hoping they kill those little creatures soon.

Feb 19, 2016 8:00 AM

Hr his is one reason I don't eat pork other then they are smart and cute, there has been more parasites in pork that don't die when cooked, our gov. Doesn't like to tell the truth about it, check out how your meat lived and died, yes worms filth and pain... much of our piano is also from the street and emotional hormones left in the meat.... it happens when pushed to slaughter house.. yes true ... our grand parents meat was not stressed just FOOD for thought .... blessed morning

Feb 19, 2016 8:01 AM

Ha piano is pain sorry phone miscorrects me

Feb 21, 2016 7:52 AM

Yes, I done a lot of reading on the subject to know what you are talking about is true. But it doesn't appear to be a tapeworm like a originally thought at first. I don't know what it is going on the appearance. I just know it has to be something living for it to make holes and to come out and go back in. Beat wishes to you.

Feb 21, 2016 9:33 AM

Profiler, when you mentioned the thing that looked like tape, it made me think of a disease that is very strange and sometimes has these strange "threads" that can be different colors (or clear) and they come out and move. It's really weird and I've seen video of it as well as read articles. It's called Morgellan's (spelling?) and you should look it up. I'd really be interested in seeing these things if you felt comfortable enough, you could text me the picture or video. (If not, I completely understand and hope that you don't feel like I've overstepped my bounds). Thinking of you and praying that the doctor you're working with finds the answers you so desperately need to eradicate this miserable problem. You're always in my thoughts and prayers my friend.. 💕🙏🏻🌻

Feb 21, 2016 10:08 AM

Profiler, blessed your heart! I had hoped that your new doc would have found some answers by now. I know you are suffering, but please don't stay away. We're all here to help and support you through this. I'm staying positive that you will get an answer and a treatment to bring you relief from this, and soon. In Jesus's name I pray and claim this for you!! Hugs, love, & supporting prayers for you dear friend! 🙂💕🙏🌼

Feb 21, 2016 10:40 AM

Always, I don't mind but give me a week or two. I am ordering a special lens for my iPhone camera so that I can take better pictures. My pictures sometimes come out blurry so I am ordering a better lens for close up and then I will send you a link to the pictures I have. Thanks for your concern. The thing about the video, sometimes you have to watch for a while. It can be slow coming out and you have to watch the details like it moves slowly sometimes so you have to make mental markers of where things were before. But then they will stop and turn turn clear and you see this elevated pile of skin. Then if I pat on my stomach it will return to the normal way it use to be. It recedes. I had the perfect video but I didn't stop it right and I lost it. It showed like a huge mass of the whatever it is. I don't even know if you can call it a worm anymore since it turns clear. The morgollons, they said it was a skin disease and was partly delusional thinking you have parasites crawling all over you. I don't feel like I have things crawling all over me. Occasionally I feel them. Mostly I feel the sores inside and the pain from them. I do feel and can move what feels like a worm and when I bother it it feels like it moves. It feels long inside. I am not going crazy over this. I don't; talk about it every day. I don't scratch and itch. I just have a couple places where they come out. I do think that when this infection first hit me, I knew it. It was like 2 years ago. Or 2 and a half years ago. I have been in pain for a long time. Going on 17 years. But 2 and a half years ago, I was hit with the worst pain I have ever been in. It came in episodes. It was all over. It was like I had the flu. Every thing hurt and I felt like I had a high fever and I was cold. It could be a hot summer day and I would be cold. I would run fevers. Since then, I have run a regular low grade fever. Between 99.9 to 100.7. But I would lay on my bed awake with this intense fatigue and pain and I couldn't sleep. I couldn't watch tv which was right in front of me. I would just lay there and stare for like four hours. It seemed like the time passed rather quickly. That is how intense my mind was out and my staring was. That is when I think my body was reacting to an infection.

Feb 21, 2016 11:51 AM

Profiler, I remember well when this nightmare began for you. All those things just popping up on your upper body and the horrendous pain they have caused you. I don't know why parasitic infections are so difficult to diagnose and treat. I guess because there are just so many of them. I can't imagine having to feel these things inside and not know what they are. I'm glad though, that this doctor is going to got the extra mile to find out what is going on. He does know that you definitely have some kind of parasite, it's a matter of narrowing it down and then getting rid of it. I pray for you that the process goes a bit more quickly so you don't have to worry about it any more. You're a great guy, Profiler, I wish nothing but the very best for you. 💕🙏🏻🌻

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