So my husband believes anything a doctor says. So I have to start my fight all over again with him when a NON LLMD wants to DX me with something other than Lyme. I have to start all over explaining to him the controversy.
So please help me, maybe if he hears it from a bunch of other people he will get it.
Is Alan Steere our friend? Or our enemy? Is he helping Lyme patients, or hurting them?
What is Post Lyme Syndrome? And is that really what we all have?
How long does a person need treatment who has been infected since at least 2004 and now how over 50 different symptoms?
Does lyme that was treated for only 2 months with no improvements actually just turn into fibromyalgia?
And how accurate is the testing, specifically a PCR (or anything) through LabCorp?
Below are my igenex results, I have low Vit D, low CD57, and a host of symptoms. I got bit by a "spider" in 2004 and had a bulls eye rash. If you were me, would you believe the Lyme has been treated and now I just have Fibro?
Please people everyone answer this...I want to be able to show my husband tons and tons of responses so he can see now why I was ready to run out of this doctors office, after I punched him in the face (no no I didn't, but I wanted to).
Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
Maybe if your husband could watch UOS it would help. I know that went a long ways in educating mine.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
It's so hard being sick, then dealing with resistence on top of that. It's hard when you don't have full support under your own roof. I feel for you.
Here are some thoughts: - Have him see Under Our Skin for sure!! (if he saw it, see it again) - Have him read Cure Unknown - Have him read Dr. Burrascano's guidelines. - stay away from docs who are not Lyme Literate (we all know they are basing their knowledge on what the IDSA says, and we all know the IDSA refuses to look at the full body of science that supports Lyme and it's treatment. Because of their conflicts of interest, they are racing to the finish line to come up with a vaccine that fits only a narrowly defined description, yet of course it will be marketed to the masses and will NEVER work, but tons of money will be made. Sad and scary truth.
Ask him to please please take the time to do these things so he has some really good Lyme background on which to base his opinions. Tell him you really need him on this.
Ticks are in the spider family. The bullseye confirms Lyme. You were lucky to get that. Most people don't. I think just about all of fibro is Lyme induced. Just my opinion. Most of us on this site have been given the erroneous fibro diagnosis (I was).
Best to you, Tammy
Posts: 2238 | From East Coast | Registered: Jul 2010
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posted
Is Alan Steere our friend? Or our enemy? Is he helping Lyme patients, or hurting them? He is NOT our friend. Definitely our enemy! He is hurting Lyme patients around the world.
What is Post Lyme Syndrome? And is that really what we all have? There is no such thing as PLS...it's all in Mr. Steere's head! We have chronic Lyme.
How long does a person need treatment who has been infected since at least 2004 and now how over 50 different symptoms? We don't know. It could take 2 or 3 yrs.
Does lyme that was treated for only 2 months with no improvements actually just turn into fibromyalgia? NO. Your clueless dr could CALL it that since he doesn't believe in Chronic Lyme. Some of us were diagnosed with FM, but it's really untreated Lyme.
And how accurate is the testing, specifically a PCR (or anything) through LabCorp? Labcorp is pretty lame. It works out OK for some... misses a lot of cases.
Below are my igenex results, I have low Vit D, low CD57, and a host of symptoms. I got bit by a "spider" in 2004 and had a bulls eye rash. If you were me, would you believe the Lyme has been treated and now I just have Fibro? ABSOLUTELY NOT!!! I was dxd with FM 30 yrs ago and now I am well from LYME treatment.
Please people everyone answer this...I want to be able to show my husband tons and tons of responses so he can see now why I was ready to run out of this doctors office, after I punched him in the face (no no I didn't, but I wanted to). I'd love to punch him myself!
-------------------- Igenex IgM (+) 31 ++ 39 IND 41 + 83-93 IND
--Plenty positive for me!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
There is no such thing as Post Lyme syndrome. Period. You may have "Fibro" but the root cause is lyme. If you CD-57 is low, that proves you still have it. Lyme is the only thing that affects the CD-57.
I see you are form the southeast. I believe one of the good docs from Under Our Skin is now in South Carolina. He is good.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
You won't be taking him to the grave with you if you don't treat... Do what you have to do!
-------------------- 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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posted
I agree completely with everything Lymetoo said.
Fibromyalgia is a group of symptoms. They are caused by Lyme, but mainstream ducks don't want to admit that, or are ignorant and really do not know the cause. I have heard it called a "trash can" diagnosis that they give you when they don't know what it is but don't want to say so.
It is possible that fibromyalgia symptoms could also be caused by other stealth infections.
A bullseye rash from your "spider" bite is diagnostic for Lyme all by itself. Nothing but Lyme causes that rash. If you have it, you have Lyme. You don't need a blood test.
My family got a lot more understanding after I got them to watch the Under Our Skin DVD with me and we talked about it, and a couple of them read Cure Unknown.
After watching the video, they told me they were glad I kept persisting for months, insisting I had Lyme and looking for an LLMD (who is 3 states away, doesn't take insurance, and I had to ask anonymously for the "secret list," so they thought he sounded suspect). They were glad I went to him and got properly diagnosed and got on the right treatment.
Try taking your husband to your LLMD with you, and maybe his respect for doctors will transfer, and he'll accept the LLMD's explanation.
If they don't come around at the beginning, they may when they finally see you getting better. The problem is that you get worse first, and then you have lots of ups and downs for a long time, and every time you have a down, the person concerned about you says, "Are you sure you're on the right treatment? Maybe you should try another doctor."
They may mean well, but don't listen to them. Don't go to any doctor for anything unless that doctor is Lyme literate. Well, okay, we all have to sometimes, but you may have to refrain from telling that doctor that you have Lyme and are being treated for it with long term antibiotics. I met someone who had several nonLyme doctors throw her out of their offices and refuse to see her (for nonLyme matters) as soon as she told them the truth about what drugs she was on and why.
"Post Lyme syndrome" is a political term, not a medical one. There is no such disease. It is not like "fibromyalgia," which is at least a legitimate name for a set of symptoms, even if applied to patients incorrectly.
Telling you that your Lyme "turned into" fibromyalgia is like telling someone, if their migraine medicine doesn't get rid of their migraine, that they now have a "headache" instead. Um, yeah.
I think it's apparent to you what symptoms you're having, and what you need to know is what is causing them, and how to get better so they will go away. Since you have a treatable disease, don't let anyone tell you that you have some unknown thing or things that just randomly occurred for no reason--all at once--and have no cause or cure, so you just have to live with them.
It is also NOT in your head. You are not imagining, faking or causing your own symptoms. You might or might not have depression or other emotional symptoms, but those are CAUSED BY Lyme. Lyme is CAUSED BY a bacteria, not by mental problems. So an anti-depressant that doctors may try to foist on you could help depression if you have it, but would do nothing for the other 49 Lyme symptoms you have.
My Mom once told me, when I burst into tears at her dinner table for no apparent reason, that I should stop getting so upset and "making myself sick." I told her that FIRST I got sick, and THEN I got upset. And some of the depression, anxiety, fear, anger, etc. we have is an entirely reasonable reaction to being desperately sick while no one will help us or even believe us. The rest of it is a physical symptom of the disease messing with our hormones or brain chemistry. We are NOT crazy.
I hope your husband comes around and gives you the support you need. Hostility or lack of support from family members makes it SO much harder to recover from this illness.
Also, look elsewhere on Lymenet for a moving post from "Lymedad," who finally understood about his daughter's illness and then apologized on this board for the way he had treated her before that. Maybe your husband would be swayed by another disbelieving male relative's experience.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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posted
Your husband needs to be educated. Start with the fact that the researcher who discovered the Lyme disease bacteria, Willy Burgdorer, (and Alan Steere is probably still mad that he didn't discover it - he was going down the virus path) is a believer in persistent infections NOT Post Lyme Syndrome. And that the Lyme bacteria is the most complicated bacteria known. It is able to evade the immune system, hide in tissues and morph into various forms.
My experience with doctors who don't know how to treat Lyme is that they either honestly say that they don't from the beginning OR others will order a ton of tests to find something else, give you drugs to cover the symptoms and later drop you. Very, very expensive, time consuming, possibly dangerous AND you are still sick.
If your husband wants you better, he will not go against you from getting treatment from a good LLMD who follows ILADs practices. It may take a long time but in the end he will have YOU back!
Posts: 472 | From New Jersey | Registered: Dec 2007
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posted
In two months, I still couldn't walk without help. After three years, I am completely well. Completely, 100% well. I did not do all abx therapy, I did a year's worth of alternative treatment at the end.
The proof is in that people like me have gotten well. I had fibromyalgia, gluten intolerance, and CFS. All are gone.
The individual doctors don't have bad intent that's why they make so much sense. The problem is that they're trusting the higher ups who have a vested interest in Lyme not being chronic.
There are people who wrote the treatment guidelines who have patents on bacteria parts and vaccines that only work if Lyme is a two week problem, they don't work on chronic Lyme. So, if chronic Lyme exists, they are due to not make the billions that they could make if it's a short term problem.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
You guys rock. We need a like button...LOL
-------------------- 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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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
Littlebit27, it looks like all your questions have been answered, so, this note/post is for your husband.
I'm going to try and be nice...I've been sick for 3 years now, a lot shorter time than many people here. I'm not complaining, I've never had any help and or support from anyone, not even my wife. This (Lymenet.org) is my lifeline. As you know, the members here on this site are great, and are here for us (7 days a week - 24 hours a day).
I gave up trying to explain Lyme Disease and Co-infections a long time ago, just don't have the energy to waste anymore.
Dear Mr. husband of Littlebit27...Your wife is very SICK and you need to support her, NOW. IT SHOULD'NT MATTER WHY SHE IS SICK, BUT THAT SHE IS SICK AND NEEDS YOUR SUPPORT!!!
If you don't feel she needs all the support and love in her life right now, then, I'll give here my number and I'll support her over the phone. You need to setup and be a man, the more she gets upset, the sicker she'll get.
People that have never been this sick with a disease that's almost impossible to cure will ``never understand''. Listen, your wife just needs your support and a shoulder to cry on once in a while, that's not asking for much.
Remember your wedding day> YOU spoke words of everlasting promises to your wife - (The promise of commitment) (in SICKNESS and in health, to love and to cherish, 'til death do us part).
Do some research on the disease, it's real, and she needs your support to get better!
Don't give up Littlebit27, we are all here for you anytime you need us... I'm hoping your husband comes around, but if he doesn't don't get upset, just keep trying to get better.
PM Anytime Steve
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
He has seen UOS but I'm going to try to get him to watch again as soon as we have some free time to do so.
I think he is starting to get the picture a little better.
It is so hard trying to explain this to someone who has never experienced it. It's horrible and words can not describe what it feels like. The pain is like nothing else, and I've had 3 kids, two of them with no medicine whatsoever.
It's to explain to someone who has never had Lyme the pain I go through walking from my living room to my kitchen (which isn't far). It's hard to explain how my neck feels like it's going to break in two everytime I turn it. Or how my ankles and legs feel like I'm wallking on broken bones.
This non LLMD was talking like he knew something really important, that Alan Steere was the expert. HA. So my husband believed him.
I was so happy that I was taking him to my appt with me and he was finally going to see what it is really like and it all blew up in my face.
Hopefully the next "LLMD" appt I make will be better.
I made a list of 14 questions to ask all potential LLMD offices and I'm going to ask each and every one of them. i don't care how mad they get at me, I'm not wasting any more energy on stupid ducks.
I've been sick since this happened, before I had a little runny nose, now it won't stop running and my head is all congested. I hate stress.
Thanks everyone for your suggestions and kind words. I did read my husband all of these responses.
BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
Hi littlebit27 -
My husband and I were both diagnosed (at different times by different doctors) with Fibromyalgia. We pursued every possible treatment we could find for years, and continued to decline in health.
We finally gave up, and resigned ourselves to living with our debilitating symptoms, doing the best we could with diet, supplements, and natural medicine. (We couldn't really exercise any more.)
When we stopped looking for answers, we started doubting ourselves and each other. My husband was under the impression that if we pretended everything was fine, it would be fine. He resorted to offering advice for how I should manage my health:
"You need to exercise more...You just need a new sleep doctor...You have PTSD...You should see a therapist...etc."
I finally had a breakdown on my 39th birthday. We never fight, but we FOUGHT. I told him I refused to turn 40 still feeling the way I'd felt for the last 15 years. He was thinking we were going to start our family! And I was falling apart! I couldn't pretend any more.
He gave me a condescending, "Well, what are YOU going to do about it?"
I told him I was going to spend the entire year ruling in and out everything I could think of, because that's something no doctor would bother to do. And I was starting with Lyme.
I was diagnosed and in treatment within a month. He was diagnosed and in treatment (with the LLND I'd picked after interviewing several LL doctors) the following month.
We are now in year three of treatment. Our health is vastly improved. Our marriage has never been better.
Keep standing up for yourself. I hope he comes around when he sees you getting well. Even if he doesn't, you keep moving forward. Get your health back.
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