posted
No go find an LLMD lol. 99.9% of regular MD's are detrimental IF you have lyme. I can say this after a year of bouncing around them and almost broke from the bills.
If they had it their way I'd be hopped up on big SSRI's. Good thing I ran from them.
Posts: 501 | From Cleveland Ohio | Registered: Apr 2009
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lymeHerx001
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posted
I have an LLMD. My mother sugested her saying she was good with Lyme from a friend.
She knew NOTHING!!!!!!!!!
She said she didnt think I was sick, maybee with AIDS or Hep C.
Are you serious?
Posts: 2905 | From New England | Registered: Sep 2004
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seekhelp
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posted
I'm doubtful the original poster would say he/she did regardless on a public forum!!
I'm NOT saying this is the case, just stating the obvious.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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lymeHerx001
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posted
quote:Originally posted by c3mom: [QB] Herx, She looked at you and said AIDS? WOW she sounds great! And here I thought you needed a test for that kinda stuff. LOL
By the way, how can you tell the difference between AIDS and Hep C by looking at someone?
How frustrating. I'm always entertained by wise words of the learned Ducks.
I was thinking the same thing. If it were true, then I would have had to have sex when I was 13 when I first got sick. That DIDNT happen.
What a jerk, maybee a well meaning one, but a jerk none the less. I feel depressed and let down.
Im not even energetic enough for sex. And she kept asking me if I drank.
I told her the last beer I had was in 2004 and it made me suicidal.
Posts: 2905 | From New England | Registered: Sep 2004
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lymeHerx001
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posted
quote:Originally posted by losferwrds: [QB] Did you give her a history of iv drug use or anal sex?
I don't understand why she would come to an aids conclusion.
Thats very odd.
No and NO!
Thats the truth. How rediculous. Im a man with long hair, maybee I look like a AIDS patient on IV drugs. WTF.
Posts: 2905 | From New England | Registered: Sep 2004
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lymeHerx001
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posted
This is how the world looks at us?
I had a feeling she was looking at me like I was just crazy the whole time.
And when she asked me "why did he dianose Lyme if you didnt have a rash."
I almost fell over!!!!!!!!!
Posts: 2905 | From New England | Registered: Sep 2004
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seekhelp
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posted
As Keebler always says, we can continue to pay money to ignorant people or move on...I'll choose the latter. There's a lot of the first category unfortunately and you never know until you meet them. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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lymeHerx001
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posted
so I shouldnt take the hep c and aids test.
Im upset that insurance payed her $200 for this bs.
Posts: 2905 | From New England | Registered: Sep 2004
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posted
You said the sentance "She looked at me like I was crazy".
Yep. I've heard and seen it too.
I've read so many posts when in "Search" and even now.
Hate that look. Oh, if only they spent one week, one day with what we feel how different "that look would be",
I'm going to Oz to look for a brain. Sheesh.
Sorry that happened. Prayers for you. Scarecrow here.
Posts: 145 | From Paris, Tn. | Registered: Dec 2008
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Keebler
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posted
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losferwrds,
My mother died of HIV/Aids in 1984. She was not a drug user and her sexual choices did not put her in a high risk group.
HIV/AIDS is a very real problem and some very nice people can acquire it in a variety of ways.
Blood transfusions are just one way that many good people have contracted HIV and regardless of the kind of sex, sharing love between two people (whomever or however) should not kill them.
Depending upon one's exposure (and that is not always certain if a partner is not honest), It may a good idea to be tested for HIV.
And Hep. C can be very slow growing, so it may not surface for many years after exposure.
But, you don't have to go back to the ID doctor for either of those tests. Other doctors can handle that. Your LLMD can handle that, and you should pose the question there first.
As for borderline diabetes, that often goes with lyme and co. but there are ways to work with that through diet and even gentle exercise.
Bottom line: lyme takes a very long time to treat in many cases. No doctor can make a quick miracle out of lyme.
None of this is easy but it is important for you (not your mother, but you) to have confidence in your LLMD. Perhaps your mother would be interested in WHY you selected your LLMD. She might enjoy learning more and becoming a better support to you.
Still, if the confidence is not there with your LLMD or you think you need a different approach, there are many other good doctors who are ILADS educated but may have something new to offer you.
First, I encourage you to be open and honest with your LLMD regarding your expectations, questions and chances of altering treatment for better results. If we just walk away, we take from them the chance to explore further or to teach us what we need to know to hold on.
You might ask about rife or changing some of the support measures.
posted
Mind if I jump in here? Ironically when I found the two embedded ticks (don't I have all the luck) I was in headed for a surgical prep room, about to have surgery (the minor version) for a spinal stenosis.
Anyway, until it was found, I was bounced about by docs who saw "nothing" because that's what they were looking for.
I was diagnosed with "fibromyalgia" because they could diagnose my leg weakness and explain it away with no expensive tests.
Again, I wonder if some are rewarded and threatened by HMOs conversely depending on whether they cost or saved them $money$.
Now, I bring my mom or husband to all appointments.
1) They can verify any subjective symptoms.
2) They help me remember anything I need to bring up and what the doctor says as well.
I have no idea if my advice is helpful, but know that I care and want to help.
I have been telling everyone who doesn't know the truth about Lyme, now that I've learned because of all of you. Thank~You
-------------------- "SEVEN LYME FACTS THAT COULD HAVE SAVED ME" VISIT ME AT:
posted
There is something to be said for having someone come with you to doctor's appointments.
One, doctors realize that someone is concerned about the condition and tend to take the patient more seriously.
Two, there is a witness to what is happening and they tend to have better behavior.
Also, it helps to have someone else to help remember everything.
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lymeHerx001
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posted
wow Parisa, my Mother wanted to come with me, but I was embarrased.
So Keebler, youre saying it might be a good idea to test for HIV and Hep C?
I know my LLMD would laugh at that If I asked him.
But this woman doctor none the less sounds very clue less.
Posts: 2905 | From New England | Registered: Sep 2004
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Hoosiers51
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posted
HIV and Hep C are things that (from my perception) a lot of doctors will want to test for in anyone who is chronically ill. It would be irresponsible of them not to check that out given our vague symptoms.
If your insurance is covering the testing, I don't see why not. Someone doesn't have to fit the unfortunate stereotypes to have one of those diseases.
Over the course of being chronically ill I have been tested for HIV a couple times by doctors. It is not like I lead a reckless lifestyle, but doctors have to rule these things out.
Sorry if she was a duck regardless though....
Honestly though, everyone should know their HIV status, even someone who has only had one or two partners should know. You need to know in case you get pregnant, donate blood or an organ, etc.
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Keebler
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posted
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First, are you a teenager just starting out it life? If so, maybe that is not necessary.
Keebler
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posted
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While ID doctors usually know very little about lyme, they do see more Hep. C. and, just maybe, the ID doctor's suggestion about that might be something you ask your LLMD about.
Seems strange she would first suggest it and then say she didn't think anything was wrong.
No doctor should ever laugh at this kinds of questions.
Viral hepatitis, especially hepatitis C, is currently the most prevalent infectious disease in the U.S. It is estimated that more than 4.5 million Americans have been infected with hepatitis C and more than 30,000 new cases are diagnosed each year.
Most common diagnosis methods are:
* ELISA assay to detect Hepatitis C antibody
* HCV RNA C PCR test
* Liver enzymes
* Liver biopsy shows chronic inflammation
Hepatitis C genotype. Six genotypes are present around the world. Most Americans have genotype 1 infection, which has lower response rates to Interferon based treatments.
Hepatitis C is an insidious and stealthy virus that mutates while hiding within liver and other organ cells, making it very difficult for the body's immune system to eradicate it.
Additionally, hepatitis C tends to progress slowly over many years , resulting in as many as 74% to 85% of infected patients having few noticeable symptoms until they reach an advanced chronic stage.
Hepatitis C results in 8,000 to 10,000 deaths annually. It is also the leading cause for liver transplants in the U.S. Without effective treatment, this figure is expected to triple within the next 10 to 20 years.
As the disease progresses, blood tests indicate elevated liver enzyme levels (ALT, AST), which are indicative of liver damage and inflammation. As the course of the disease gradually disrupts crucial liver functions, it progresses to cirrhosis in about 15%-25% of patients.
A small percentage among these cases may progress to hepatocellular carcinoma, a type of primary liver cancer.
Although the severity of hepatitis C is much less than HIV infection, four times as many people are infected with HCV than HIV. The course of disease progression can take several decades, which allows considerable time for proper treatment and disease management.
Proper treatment, lifestyle, diet, abstinence from alcohol and stress management are key factors in mitigating disease progression.
lymeHerx001
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posted
no ,not a teenager but sick since the beginning of my teens. Never promiscuous.
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lymeHerx001
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well, I think I will take the tests for the hell of it.
For some reason the AIDS test scares me! I mean, are there false positives with AIDS?
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lymeHerx001
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Also I think that If I have AIDS I would be DEAD!
But youre right its just another think thats important to test for.
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Keebler
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Personal care items such as razors, toothbrushes, cuticle scissors, and other manicuring or pedicuring equipment can easily be contaminated with blood. Sharing such items can potentially lead to exposure to HCV.
Appropriate caution should be taken regarding any medical condition which results in bleeding such as canker sores, cold sores, and immediately after flossing.
HCV is not spread through casual contact such as hugging, kissing, or sharing eating or cooking utensils.[19]
lymeHerx001
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posted
thanks, Keebler.
What really disturbed me about this woman was that she was adament that mycoplasma doesnt cause chronic disease and that me testing positive 8 times for M. Pnemoniae didnt mean anything other then Im cross reacting.
Well if thats the case, then it should be the same for every test. Every test cross reacts with every other one.
Posts: 2905 | From New England | Registered: Sep 2004
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Keebler
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posted
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Well, she's never read the work of primo researcher Garth Nicholson in the area of mycoplasma.
MariaA
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posted
I had almost the same experience when I first saw a duck for what I pretty much knew was Lyme (I'd been bitten by a tick, got an atypical rash, come down with an insane flu a week later, and had arthritis and horrible fatigue 6 weeks later).
He started down a 'weight loss, night sweats' line of questioning, which I quickly recognized was an HIV line of questioning. Then he finally closed the door to the waiting room, which had been open the whole time, and stammered out 'have you been having safe se..se..se...x?'. The old ******* couldn't even say the word "sex".
I hope I gave him a withering enough glare for what I was feeling.
Then he pronounced something along the lines that 'well, it's not Lyme , but it might be leukemia, or cancer, or AIDS'. REALLY.
The background to this is that I'm quite thin, and had a couple of tattoos. This was near NYC where a) Rockland County is endemic for Lyme and b) there are tons and tons of people with tattoos. I realized that in his horrible world-view, he must have thought I was a drug-addicted prostitute because of the tattoos. Ugh.
I had already educated myself on the Lyme symptoms, and I knew a bit about health, so I was pretty sure I didn't have leukemia, but I knew that many other patients would have been terrified to hear this flippant dismissal of their symptoms , with no evidence whatsoever for my having any of those other diseases and plenty of evidence for having Lyme.
I think I ended up testing CDC positive out of all that.
-------------------- Symptom Free!!! Thank you all!!!!
springshowers
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posted
Duck or No Duck it does not hurt to go ahead and rule out things with tests.
My adopted son had to go to the hospital and they ran a full panel of various thing because of the seriousness of what he was exhibiting at the time.
i would never have known he had Hep C if it were not for testing panels and now we know.
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Pinelady
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posted
lymeherx01 I have Lyme and I was almost dead. It
was effecting every bodily function I have,
including my heart. I found some things that worked
to calm it down until I could get on the
antibiotics while waiting to get in to LLMD. I am
a lot better now but because of my experience
very scared for people who are not there yet. I
think anything is possible in testing with Bb.
Igenex helped me get here.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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lymeHerx001
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posted
Maria, you tested CDC positive for what?
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dmc
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posted
a prominant LLMD tests all his new patients for Hep.C. (just to make sure)
That is a scary bug since apparently it can live on objects for a few days...(doorknobs, counters etc.)
Posts: 2675 | From ct, usa | Registered: Jan 2004
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MariaA
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posted
Lyme, of course- not "leukemia, or AIDS" or whatever else the dang duck claimed I might have "except Lyme". I dont' remember a huge amount about my testing but I think I argued with him to give me a Western Blot right away, and unbelievably he caved.
testing for Hep is never a bad idea. I had a friend with fatigue symptoms (and pain I think) that completely resembled Lyme and turned out to just be due to elevated liver enzymes instead, caused by something else she was taking. She got the liver readings normalized and all her 'lyme' symptoms disappeared. I can only imagine what it'd be like to have both Lyme and something else.
-------------------- Symptom Free!!! Thank you all!!!!
lymeHerx001
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posted
I cant believe I was never tested for HEP. I have to check my records.
Anyway, do you think I should give this duck more money from insurace?
It kills me to think that shes getting 100-200$ while I make about $300 a week!
I feel like such a sucker, or loser..... Im in stitches over this.
Posts: 2905 | From New England | Registered: Sep 2004
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disturbedme
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posted
I don't get it? How can she say she doesn't think you're sick or have any disease if she thinks you have either AIDS or Hep C? Both of those are diseases and both of them can make someone very sick!!!
I'd say it wouldn't get hurt to get tested for both, just to see.
Even if you know you have lyme, it doesn't hurt to make sure these other things come back negative, ya know?
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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lymeHerx001
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posted
Because she cant explain the burning in my feet. She cant explain my dietary restrictions (I told her I can only eat mean and vegetables)
She had nothing to say about the vertigo or chemical sensitivity.
Im just worried about a false positive.
She thinks that the mycoplasma infection is a false positive or its cross reacting.
Im just sick of going for blood work to prove that Im sick and theres something wrong.
Also she doesnt belive in taking anti biotics at all for chronic mycoplasma or Lyme.
Im kinda worried that I gave her my doctors name, as much as Im frustrated with him, he is very nice and caring and I dont want to see him shut down.
I do believe my LLMD helps people where ducks fail!
Posts: 2905 | From New England | Registered: Sep 2004
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Keebler
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posted
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Don't hire any professional who is not up to good standards.
Get your LLMD to run the Hep C test. Or your PCP. You do not need to go back to a doctor who is so incomplete.
It perplexes me why you would even consider going back to a doctor with whom you have so many reservations and she is not accepting of what you are facing.
Now, it's good she suggested a Hep C test, but it does not take a rocket scientist to figure that one out. Read up on it, though, to be sure the correct tests are done.
And, still, you are dealing with lyme. You know that already. So, even if the ID doctor tests you, regardless of the outcome, she is looking at you like a freak.
Why hire someone to abuse you? It's not worth the drama and such interactions really distracts your energy from the task at hand.
----------
Since I don't like blanket judgments:
I do want to say that not all ID doctors are the IDSA puppets. Most are; but not all. Some are smart and dedicated and some are just beginning to understand the web of deceit that the IDSA has woven regarding tick-borne disease.
So, sometimes, giving an ID doctor a chance can be a good thing - IF some homework has been done to learn about their skills - IF you know up front that they understand much more about lyme than the IDSA "allows" and - IF you know that they are familiar with the ILADS research.
That is a rare combination in an ID doctor, but there are a few out there who deserve not to be painted with the same brush.
However, when there are obvious conflicts, for whatever reason, it is usually best to find a doctor who has your trust and respect.
We have neither time nor energy to keep getting beaten up over and over again. We can't change how some doctors practice but we sure don't have to hire them as our experts if they are not one.
Hoosiers51
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posted
You don't have to go back to her!
If you still want to get the testing done so that it's not just "one more thing" you need to ask the LLMD about, just get it done.....then you can call the office in a couple weeks to ask for the results.
Sorry, I know testing for these things can be nerve-wracking, because you think to yourself, "what if it IS positive? How would I have gotten it?" even if, based on your lifestyle, it is very unlikely.
I'm just of the mindset that getting this testing is nothing to be ashamed about nowadays, as opposed to in the past when people were even less informed....I was recently pregnant (ended in miscarriage), and they ordered that testing for me without even asking how many partners I had had, etc.
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lymeHerx001
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Keebler thats a good question. I think deep down I feel guilty about this and that I have to suffer in order to prove it to "them."
I swear I had a HEP test once. And my last IGINEX test a couple years ago my LLMD said that lyme wasnt really a factor any more and he keeps saying mycoplasma.
Levaquin DOES hit me and make me herx and then feel better for a little while.
I do think that I am dealing with some sort of bacterial agent, why else would abx make me feel that different.
I just feel like she is shooting in the dark. She didnt understand that I have been sick for a VERY LONG TIME!!!!!!!!
And that its very serious for me. I think she looked at me like a drug addict or alcoholic.
She asked me, do you drink about 3 times. I told her last beer I had made me suicidal. She couldnt believe that!!
Then she kept saying, you smoke, do drugs... no no no. NEVER????
You really think Im gonna tell her everything I smoked. ITS IRRELEVANT> If I were in Colorado things might be different.
But here in the nutmeg state everyone is so prissy and condescening, they want to label me a druggie or a loon, its much easier.
I have never went to a doctor looking for anything other then RELIEF!!!!!!!!
There are people with fibromyalgia who take oxycodone, im not one of those. I took a percocet once and it made me flush in the face and made me hot.
It did not take away my pain.
It seems like she is looking at me like I just got sick last week or month.
She cant admit. I DONT KNOW GO SOMEWHERE ELSE.
She wants the MONEY@!!!!!!!!!!!!!!!!!!
Posts: 2905 | From New England | Registered: Sep 2004
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posted
I got tested (without knowing) for HIV and Hep when I first was really sick and seeing my doctor. She just did it to absolutely rule those things out. It's not uncommon as Hoosiers said for anyone as sick as us.
But, I am curious to know what in your symptoms made the doctor say HIV or Hepatitis C? It just doesn't make sense.
disturbedme
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posted
I wish it wasn't so hard for people with positives to believe their results and to not think it's a mistake or believe it's a false positive.
What about the people who have lyme but never get a positive ever? It's so much harder for us, I think, because we are so extremely ill and yet we don't know FOR SURE if lyme is what we have. And so we are treated for it but we are going blindly into it not knowing for sure.
It's sick, but I'd LOVE to get a positive on a lyme test just once so I'd know for SURE. With an entirely negative test, it does not rule out lyme whatsoever. But it also doesn't totally rule it IN either...
If you have a positive, you have lyme. Plain and simple. Mycoplasma does not cross-react with *ALL* or even very many (I think maybe one or two at the most) of the lyme bands... and depending on what bands you had positive, that totally rules out that doctor's theories.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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sutherngrl
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posted
disturbe, it's not sick to want a positive Lyme test. I pray for one all the time so I will know for sure and won't always question the diagnosis. Without a positive, the question of whether it is lyme or not is always there. That is one of the reasons why I hate this disease. I want validation for my suffering.
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lymeHerx001
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posted
8 times positive for mycoplasma pnemoniae IGG and IGM.
Is she a MORON??????????
She thinks that the test is wrong. So it must be AIDS or HEP C.
I also read the you can have HEP C and show no symptoms.
The only thing that I can think of as far as contamination is taking a needle in my teens, putting it to a flame or alcohol and then popping cystic acne with it. I know it sounds gross, but I have some dermatilomania (mild skin picking, acne mostlly on my body).
I dont look disfigured or abnormal at all from it.
Never did IV drugs or blood transfusion.
Posts: 2905 | From New England | Registered: Sep 2004
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lymeHerx001
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you know what, Im starting to change my mind.
I took 20 mg of levaquin today and felt a world of difference.
My skin was in less pain and my head was more clear, and I had more energy.
To think that the levaquin is not hitting anything and that my 8 positive mycoplasma test results mean that they are cross reacting is just ludicrous!
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Pinelady
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posted
Igenex asks for no antibiotic for at least 2 weeks prior to draw. But a antibiotic challenge is great idea.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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lymeHerx001
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posted
Antibiotic challenge?
BTW im still on the fence of whether or not to get these tests.
I mean if she believes 8 times + myco is a FALSE POSITIVE. Then who is to say that If I test + for HIV or HEP C that this to will be a false positive.
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lymeHerx001
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posted
Ok, I think Im gonna tell them to test me for everything but HIV.
I dont want the mental devistation should I have a false positive.
If I had full blown AIDS wouldnt my CD4+T cells be low?
I just would rather not know. Ive been sick since 13 and this is an insult. If I do, then so be it, let me die.
I dont want to give the ducks more power with a false positive test. I was never promisuous and never did IV drugs, so my risk is nil to none. Unless of course I contaced it through kissing. But then again I dont even have herpes virus.
I do test positive for parvo virus and mycoplasma. And for her not to believe that mycoplasma pnemoniae can bring about a chronic illness, well she is misinformed at best.
Posts: 2905 | From New England | Registered: Sep 2004
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lymeHerx001
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posted
ONE MORE POINT!!!!!!!!!!!!!!!!!
She didnt seem to believe in the herxheimer at all!!!!!!!!!!!!!!!!!!!!
I told her that after 3 days of BIAXIN I felt like someone broke my kneecaps. She pretended like she didnt hear it.
Posts: 2905 | From New England | Registered: Sep 2004
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Keebler
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posted
-
Two and Three posts up it sounds like you are going to go back to this doctor for testing.
Why are you not planning to go elsewhere if this doctor upsets you so much? The stress and drama of that is really detrimental to your body even beginning to get into a healing mode.
There are many other doctors who can run these tests without the high emotional price tag you have with this doctor. There are many who will treat patients with respect. Go to one of them.
lymeHerx001
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posted
Keebler you have to be the most emotionally sound person on this board and stand for the voice of reason.
I dont know why, I have been jerked around so much that I dont know which way is up anymore!
I would just like to have the test results for insulin ressistance and HEP C at least.
But your right, I dont have to see her. I felt that she was stigmitizing me the second I walked through the door. "How can I help you today."
As If I had a sore throat! Please. Keebler you know me better then any doctor could just from experiencing everyones stories on this board and reading through these posts of these desperatelly chronically sick people like myself.
Thank-you for that.
I feel as If I need to prove this woman something, but you know what, like my father said, no matter what I do I will not change her mind. She has been practicing medicine for a long time and what will I gain by even getting a glimmer of understanding from her?
Nothing but wasted time.
Posts: 2905 | From New England | Registered: Sep 2004
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lymeHerx001
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posted
Allright Keebler, you got me. Im going to cancel my appointment.
I should have known that when she asked me what medications I take and I told her just the ones I take to sleep which were Ambien, Xanax and Benadryll she gasped.
This woman is just used to treating normal fully functioning adults who happen to get sick, not a complex illness like mine or anyone else on this board.
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