posted
Hey, I've read your several post on thebody.com. I have a question for you, my story seems little bit confusing.
I met a call girl, and I had unprotected oral sex ( I've received ) and protected sex and little bit of foreplay. In between I actually don't know during the foreplay if my penis came in contact with her vagina or not. But several days latter, I came down with a pretty bad flu and had really bad abdominal pains along with pain in urination. My doctor gave me azithromyizn to clear the infection, it work well. 2 weeks later I tested for Gonorrhea and Chlamydia & Syphilis, results was negative. At 4 weeks, I tested for HIV 1 - Elisa, it was neg. On week 8 I was sick again, from there on my lymph nodes started hurting in groin, neck, & armpit area along with constant mucus drainage and allergies. I've never had allergies before. A week later, I was diagnosis with prostate infection, I was on Ofloxin antibiotics to clear the infection. I went had and did a 8 week Elisa HIV 1 test, results negative. I was constant sick all the time for next few months. I tested again for HIV 1 at 3 and 5 months, result was negative. Many people have say that I can not have HIV, but to this day, almost a year later I am still suffering from, constant sickness, pain in lymph nodes all the time (its on and off pain that comes and goes, last about 10 - 30 seconds), fatigue, weakness, constant mucus drainage, when I swallow I feel like swollening lot of cough and thrush, also when I breath I feel week , get headaches & feel like throwing up, and I also feel so bad of feeling in the middle of my stomach. I feel bad right below the chest , in the middle before the upper abdominal are connected. Also I get sharp pains in ribs, stomach and around kidneys sometimes. Its on and off pain.. My last test for HIV 1 was at 5 months. I've also did ultra sound, negative result, did all the test to see if my Urinary Tract is normal, everything is normal, here and there I will get prostate infection. I did get that from this girl. I am only 20 never had any problem.
Also tingling in fingers, eye pain, pain on the wriest, ankle pain, pain on the bottom of my foot, fatigue, photophoba, mouth ulcer, upset stomach and much more.
Welcome to Lymenet. Hope we can help point you in the right direction. It sounds like you need answers now.
Sorry you are suffering so long with no real answers. Your story is difficult to read because I have a son who is 20 years old. I couldn't bear to think of him as sick as you are.
Your situation is very complex, but only a Lyme Literate Medical Doctor (LLMD) can tell you if you have Lyme Disease.
He will base his diagnosis on a physical examination & thorough history.
He will eventually order Western Blot testing for Lyme, but there is no universal Lyme Test that is 100% accurate. He will not use the test to diagnose you.
You must forget about the test. Some of the sickest folks have what appears to be a "negative test". Forget about not having a Bullseye rash & don't worry about not remembering a tick bite.
What matters is that you have serious symptoms and it is totally up to you to take action & find an LLMD.
If it is Lyme, only then will you start to regain your health through an LLMD. Do not let any more DOCS dismiss you as a TEST RESULT.
You deserve to know if you have Lyme Disease, so please do not wait another week or another month to find a "real" LLMD. The clock's running.
You also must learn if you have other tick borne infections such as Babesia, Erlichiosis, or Bartonella. Some of these infections are silent. Also, the symptoms overlap much of the time with Lyme. This is all so complicated.
Just so you'll know, it appears there are some fake LLMDs on the loose. They proclaim to treat Lyme, but sometimes the patient knows more about the complexities of the disease than the DOC.
What results is inadequate treatment which leads to a more severe case & it becomes much harder to eradicate-----a colossal waste of energy & money.
Lyme affects every organ in the body much like syphillis. So who better to understand if this is truly Lyme or something else? The folks on this board know what Lyme can steal from you------your future.
You're much too young to sacrifice your life to please the medical establishment. We all had to eventually say "enough of regular DOCS" and make the effort to find a real LLMD.
You must take charge of your health now. Use all your precious energy & funds to find an LLMD.
Sorry, we are not allowed to post physician names on the board, but here are 3 ways to find an LLMD:
Go to the front page of FLASH DISCUSSION & you'll see the heading, "Seeking a Doctor." Enter your request & tell them what area of the country you're located in & someone will privately e-mail you names of LLMDs that are closest to you.
Or, you can go to heading, "Support Group" at the left of screen & click on the ones from your state. Contact them via e-mail.
Or, you can click on the icon "Lyme Disease Association, Inc." at the left margin of your screen. Click on Doctor Referral or call them at 888-366-6611.
If you prefer e-mail, then contact Kim Uffleman at the LDA;
However, your LLMD will ask you far more questions than are on that list. They do a neurological exam to see if your cranial nerves are affected. Listen, a good LLMD knows their stuff.
I'm truly concerned about you. These symptoms will not just go away. They're telling you to go get help. You don't want this stuff going to the brain. It's very hard to kill the bacteria there.
Nothing about this will be easy, but you have to follow-thru.
Let us know how things go. Remember-----Lyme Disease-----it's not what you think it is. Take Care, Jan
[This message has been edited by RECIPEGIRL (edited 11 August 2004).]
Posts: 602 | From Burleson, Texas, USA | Registered: Jul 2004
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posted
u may have syphillis... syphillis and lyme share a lot of the same characteristic symptoms. they are both for one thing spirochetes. u may wanna be tested again for syphillis.
Posts: 255 | From Greenville, NC, USA | Registered: Oct 2003
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
After reading your post one thing seemed to stick out a little. The fact that you have had a number of antibiotics and no mention of probiotics. Most mainstream medicine docs don't prescribe probiotics because mainstream medicine has no prescription for them...only health food stores. Some of your problems may be caused by a yeast problem that has never been addressed. You may also try a test for candida...which is common out there. The above advice is very good stuff...especially about Dr. Burascano...at least when you read his protocol it will answer some of your questions and give you some good advice on probiotics and supplements you need to be considering.
Good luck and God Bless...........the zman
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Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
I'm very sorry to hear about what you are going through.
It sounds to me like you have a very typical case of Reiter's Syndrome. Reiter's Syndrome is considered a type of Spondylitis. Spondylitis is arthritis of the spine.
Reiter's Syndrome is a reaction to an infection. It is also known as Reactive Arthritis. It is more common in men, and most known as a reaction to STD's including chlamydia. However, it can also result from food poisoning--I have it because of a salmonella infection.
I've posted some links beloe for you. The first is to a web site on Spondylitis, and the second is the page from that site on Reiters Syndrome/Reactive Arthritis.
I think you will find it answers many of your questions. Particularly eye pain, pain on the bottom of the foot, ankle pain, mouth ulcer, pain in urination, etc.
Reiter's sometimes goes away on its own, and it sometimes recurs multiple times or becomes chronic. Traditionally, doctors simply treat the symptoms. But there are some doctors out there who will use antibiotics because they believe there is a current infection causing the symptoms. Personally, I'm giving the second type of doctor a try, because it doesn't make sense not to try.
You have been given important advice from everyone. I'm so glad others are helping you. They're all correct------it could be any of the things mentioned & perhaps even all of those things together.
You've asked about HIV----I commend you for getting tested & it's good to rule that out.
I know next to nothing about that. Sorry, I wish I could help you out a little more on that. Perhaps others will stop by who've worked in public health & know something about its onset & can help.
My amateur opinion is your symptoms came on so fast & severe, that I've always thought HIV either lies dormant or evolves slowly. I really don't know.
Aniek gave you a goldmine of information. If you decide to see a rheumatologist (arthritis doctor) get to the best. You don't need any test left unrun. You need their experience & expertise.
I'd print out your symptoms from the post & all the tests you've had & give it to the rheumatologist. (Double-space it though or they won't read it.)
He'll get the picture of the agony you've been dealing with & the disappointment of no answers. Maybe he'll work a little harder on getting you well.
You've got to find the root cause of your problems & it sounds like you're on your way.
We know you don't feel well & will be busy going to the Doctor, but sometime let us know how you are doing. We'll be watching the board.
Everyone wants you to get well NOW. You have so much life ahead of you. You never know what wonderful things await you. Take Care, Jan
[This message has been edited by RECIPEGIRL (edited 11 August 2004).]
Posts: 602 | From Burleson, Texas, USA | Registered: Jul 2004
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Lishs mom
Frequent Contributor (1K+ posts)
Member # 2344
posted
It could be HIV, lyme or syphillis easily. If I were you I would get a "Western Blot" for each of those. The screening test "ELISA" is not accurate enough. Syphillis, like Lyme is a great immitator, and has an uncanny way of escaping the immune system, which also means your immune system is not building antibodies against it. That said, antibody tests (ELISA, or WB) may be negative while still positive bacteria in your body.
Now that said, you mentioned you have also had problems with Thrush. Thrush, also known as candida, can also cause all the symptoms you have stated. This is a fungal infection, and may be seconady to your initial infection. The use of antibiotics if not supported with probiotics can lead to a systemic fungal infection with Candida.
Have you been checked for heavy metals? This too can cause some issues. In your case it does not sound likely, but it could be you had something which was treated successfully, but your body at the same time was inundated with heavy metal. Lastly, not to sound morbid, is anyone who has access to you upset with you? Arsenic causes the same type of reaction.
I agree get the western blots for syphillis. There is a study on the lymenet that I was reading about syphillis that states that the tests aren't always accurate. It was saying a newer more sensitive test was used to identify about 50% of people who had previously tested negative.
Syphillis is supposed to be a clinical dx as well as lyme. But of course this is often ignored from what I gather. I would visit a sexual health clinic if you havent' already and tell them what you did and that you felt fine before the encounter. There are other things out there that are not as common that are std's that you don't hear about everyday, so a sexual health clinic would be best.
Also, get the mouth sores cultured for syphillis, they can do this.
posted
I have been to 10 different doctors and told them what I am going trought, they keep telling me that its nothing. I even been to Infection Disease Doc who says I dont have anything, I told him check me, he says he dont think so and boom they kick me out by saying, your fine. ----
I was tested for Syphills at 3 months, is that not accurate ? EVen if I did have any STD type I been on so many antibiotics like
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Ben,
What you are going through is very difficult. It shows a lot of personal strength that you are researching yourself and searching for an answer. I know it's hard, but I think it will bring you to an answer faster.
RECIPEGIRL mentioned that HIV often lies dormant. That is true. It is uncommon for HIV to progress to AIDS so quickly.
Many of us here have gone through years of doctors saying they don't know, or that it is nothing. I had a doctor once tell me that I needed to find somebody who thinks outside of the box. There are doctors who like simple cases, and there are doctors who love to problem solve. You need the problem solving kind. Ask your doctor if he/she knows any doctors like that.
If you haven't done so yet, please look at the links I sent you. You do have a lot of symptoms of Reiter's, and if I were you, I'd print information out and bring it with me to the doctor. Reiter's is a rare condition that some doctors may have never seen and therefore don't know how to diagnose. But the foot pain, eye pain and mouth sores are definite signs.
Also, I really hate to say this, but some doctors treat STD patients differently. It's by no means ok, but it's true. You may want to find a doctor who specializes in HIV or go to an STD clinic where you may be treated with more respect when you tell your story.
You are also very young. I felt intimidated going to doctors and questioning their diagnosis (or lack of) when I was 27. Have you taken any older adults with you to the doctor? I don't know if your parents know, or if there is another family member or friend. Sometimes age alone makes a difference in the respect you get from a doctor.
I hope these comments help. Remember you are doing the right thing in not taking nothing for an answer.
-Aniek
Posts: 4711 | From Washington, DC | Registered: Mar 2004
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lymiecanuck
Unregistered
posted
Hi,
I don't want to scare you but that's what I read and with all the testing I have through dealing with lyme and other health issues before I knew I had lyme, I find all testing to be a hit or miss type thing.
So many people on this board go through lots and lots of testing to find out what's up with their bodies, and so many times tests come back negative or different than last time. We keep telling the doctors we don't feel good and kept being told, the tests show there is nothing wrong. Are we all nuts?? NO! Obviously, testing isn't all it's cracked up to be.
I met someone whose test for a pap smear came back negative. but cause of pain her doctor had the sense to do a physical check and she had cervical cancer with tumors doubling in size by the week, but any doctor will tell you these tests are very accurate.
Ask for the western blots for syphillis, I checked and they are "MHA-TP", "FTA-ABS", write them down and take them with you as most doctors don't test for these unless the elisa comes back positive, this is the same with lyme in ignorant heartless countries like Canada, they do the same thing with West Nile, by the way. I think it is there way of dealing with public heatlh crisis, not only with lyme but any disease that may cause public outcry and fear. The lower the numbers the calmer the people and lots of people save money and the disabilty and insurance companies save thousands not having to pay to people who can't get diagnosis.
I don't know if you have syphillis as what I read, it takes time to feel sick, not right away, but who knows, the doctors obviously don't know much as you are learning. I wouldn't take any chances with it, as you are not and get the western blots, try not to be on abx when you do it.
A natropath would be a good idea to build up your system and learn to detox and get on a good probiotic.
Try to relax, as stress makes all illness worse, and try not to worry so much, I know it's hard, but try.
posted
No, my parents do not know, but my friend who told me to do this, does know.
If I do end up getting HIV, thats what I think it is, I dont know what I will do , its not good to live with HIV.
This was my first time, I made a mistake and I dont whanna be the unlucky person who gets HIV or any bad disease from one act, i was not educated, I am dum, but I shouldnt punished this bad.
I will call my doc and get all the STD check tomorrow, I will let you know the results.
I hope its not HIV or anything serious.
I will print everything everybody told me and I will take it to my doctor and let him or her know whats going on.
I hope things work out. I don't see you mention hepatitis c or b. I would check for these if you haven't already. Don't beat yourself up about this, you're not the first kid to do something like this and you won't be the last. Just be more careful in the future and maybe only have relations with people you know and trust, so you don't worry so much about getting HIV.
The last thing I would imply is that this is stress, since we hear so much about that from doctors, but stress makes everything worse, so try to reduce some stress while waiting for all the results.
posted
Sometimes the only thing you can do is to freak out on some of these doctors and demand they test you for everything under the sun. Ive had cancer and doctors told me I was fine till finally 3 years later I demanded a CAT scan or MRI. Then finally they found the tumor!!! No one knows you better than you, and doctors always want to pass your illness off as "nothing". Dont stand for that CRAP! I wish you the best, hang in there.
Posts: 232 | From kennett square, PA USA | Registered: Aug 2004
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Lishs mom
Frequent Contributor (1K+ posts)
Member # 2344
posted
quote:Originally posted by w4lmfff: Just cant tell parents.
My oldest son did some really dumb things when he was your age. He was both ashamed and embarrased to talk to us. He floundered around for about a year, and finally decided to talk to us about it.
He was shocked...we didnt yell, scream, cuss and cry. We helped him through a very very tough time in his life.
He told me later he wished he had come to us in the beginning...he expected at the least a lecture.
When kids grow up, and leave home...parents expect them to make some dumb mistakes. Thats PART of growing up. Parents also shift from being a "mom and dad" figure, to being more of a friend figure. One who listens and offers advise and is there.
Not all parents do this, but remember they may have some good advise and be able to help out. And since your 20, you have the option of "taking or leaving" the advise they give with "no hard feelings".
Consider breaking it to them, they may be more helpful that you realize.
posted
Thank you so much for letting me know whats going on. No I can not tell my parents, they are old fashion, they will kill me.
Today I saw my doc, and explaine everything to him about lyme disease he says no, he dont know and says it could be stress.
I demand him to do test for me.
Following test will be done: HSV 1 & 2 , HIV 1 & 2 and CBC and Liver Test & CD 4 Test.
I did do a test for Hep B & C at 3.5 months, it was neg.
If my results are Neg for HIV than, I will go to another doctor and tell him my syptomes without telling him what I did, becuase if HIV and STD are normal than why worry about it ? Am I right or wrong ?
But I do know that there is something wrong with me, and all the information and help I got from this board, I thank each and one of you, I will let you know what the results are, but in meanwhile, I HOpe god is on my side and saves me, just one time.
I hope everything is ok. Also I am going to contact Lisa who email me says she knows some docotrs about LYme disease, I am going to get another opinion on this. I will keep everybody posted.
Lishs mom
Frequent Contributor (1K+ posts)
Member # 2344
posted
I am not surprised the doc said no to lyme.
Its medical negligence for him to NOT TEST you for lyme disease.
Please either see a lyme literate doctor, or writed down every symptom, and then demand a test for lyme or for the doctor to sign that sheet of paper refusing you a test.
Lyme is a clinical diagnosis. Demand a Western Blot, then if he refuses, take that signed sheet of paper and copy it, and send it to the medical board saying he refuses to consider this when all else shows normal, and request an investigation!
I don't think anyone on this board is shocked at the diagnosis of "Stress."
That's code for: Gee, your case might take some extra work so let's scoot you on out of the office. Sorry to say, but that is one way they get rid of patients they're not interested in.
He absolutely knows something is wrong with you....they're such great actors.
Lishs Mom gave you excellent advice. Try that. Just having your symptoms typed up will be an immense help for that hard-to-find doctor who truly wants to help you.
Also, don't forget to research those sites Aniek gave you. She may just be right.
It sounds like your diagnosis will be a diagnosis of exclusion. You'll have to be checked for several things & keep ruling things out & seeing different DOCS & an LLMD.
This is the hardest time right now because you're trying to hold those DOCS feet to the fire & force them to get real. But now, you have knowledge on your side.
You must persevere until you get answers. Believe me, it will be worth it in the end.
One "Top?" rheumatologist in Dallas even yelled at my husband at my LAST visit & I'm the patient.
Don't settle for anything less than the truth.
There is a post here called: New Poll: What is the most outrageous thing a Doc has said to you. I think hundreds replied. (I'll try to send it to the top for you.)
What these patients were put through was a travesty. How can you denigrate a sick person?
Don't give up. I think I've seen close to 50 doctors-----none of them liked me. They wanted me to go away.
Just knowing ahead of time of what to expect from some DOCs can give you a bit of reassurance. It's like lowering your expectations----but only temporarily.
It's an unfair struggle for you, but you must be relentless. Take Care, Jan
Posts: 602 | From Burleson, Texas, USA | Registered: Jul 2004
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posted
I wont give up,I am waiting for LISA To call me back with a good LLMD doctor where I live, but also I am scared about the Insurance Comapany. I have Blue shield PPO, do you think that my insurance company will get mad and stop paying becuase i am visiting so many doctors.
Also can anyone recommend me what type of doctor I should see ? If my results are normal, than I can rule STD out except herpes I got. But Oh well.
Than I can move on to focus on what can cause all the problems. I will go with LLMD doc onces I find out whos in my area.
Its gotta be something, you know, I never felt this bad in my life ever.
One doc told me stress can cause pain in your lymph nodes, yea k & another says allergies can do it. What a lame excuse they come up with.
you know what, most doc dont konw ****. All they know is medicine. On What Meds to put people on, they dont even know what symptomes are related to .
I am seening another doc on the 23rd. No mores Infection DIsease doc, they are the laziest doc ever.
You've asked about "BC/BS PPO refusing to provide coverage for so many DOC visits...."
I don't think they can do that because you have a contract with them. You really have to know what the policy does cover though.
Maybe someone with BC coverage will visit the post.
Did anyone prescribe an anti-viral Med for herpes? Someone on this board takes a good one because our immune systems are so low.
I'll have to look up the name of that tomorrow for you.
There are natural things that are anti-viral for herpes from the health food store like: Lysine amino acid capsules.
I don't want to get you bogged down in all that right know, but when your immune system is back up & running strong again, perhaps your herpes will go into remission.
I used my insurance to see many kinds of doctors like rheumatologist (arthritis) & neurologist who ran an MRI & infectious disease.
You'll have to figure out which DOCS would be applicable to your symptoms & what test you want run.
I tried to rule out everything I could think of before going to the LLMD so we'd already have routine thrings completely checked out.
If you decide on a rheumatologist for reactive arthritis------be sure, like Aniek said, to select the kind of Doc who will treat it. If you don't have it, he can rule it out.
It's a shame, but you'll have to tell him up front you want to be checked specifically for reactive arthritis.
A person develops a reactive arthritis from toxins in the body that bacteria are producing. Try not to let the word "arthritis" throw you off track.
Your immune system is trying to deal with those toxins.
I don't have your post in front of me, but if you haven't had the hepatitis B & C test run, do that. Any PCP can run that.
I don't know if scheduling appointments will work out like that for you. You can always go ahead & see the LLMD first.
The LLMD may recommend going to a specific doctor for certain tests so your insurance will pay for it. And then return to the LLMD with the results.
Sorry, I can't tell you exactly what's right for you. But I'm so glad Lisa is helping you.
Sometimes with an LLMD, the insurance will go ahead & pay for lab work & prescriptions, just not the doctor's visit fee.
If that's the case, explain the situation to the LLMD face-to-face (not the nurse) & perhaps you can pay less because you'll pay cash that day.
You're dealing with so many unknowns right now. Perhaps others will stop by for suggestions.
You can always post a new subject matter for specific questions, too.
Or tomorrow, if you want to send your original post to the top of the question list to get more replies, then-------post a reply to yourself. Type in "to the top" or make another question for everyone.
Aniek was right about taking someone with you to the DOC visit. Even if this person is not a lot older than you, it's good to have a witness.
They can stand up for you. The DOC will see immediately that it's two against one.
Keep asking questions. I hope you get more definitive answers from others soon.
Take one thing at a time & it will work out. It's a process. Take Care, Jan
Posts: 602 | From Burleson, Texas, USA | Registered: Jul 2004
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posted
did you only test for syphillis etc at 2 weeks post infection??????? that is too early, not enough time to make antibodies..... I think you are more likely to have that than lyme...get enother test!!! but it does not matter, treatment is the same... you had many antibiotics...but neither of them was for a long time continuously.....It might have killed some bugs off..that is why you initially got better...but they came back when antibiotics were no longer in your system... I hope you get some answers soon
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