posted
In my 3rd month of treatment, getting no where fast. decided to go to Rheumotolgist just incase. According to him:
1. Lyme is rare in Ohio, very unlikely to get
2. If you dont get a rash, you dont have lyme
3. the dot-blot assay is NOT FDA approved, there for I dont have lyme, (even though the test was positive).
4. Migranines and neck pain are not symptoms of lyme.
I am not even sure why I bothered.. Now it makes me second guess my LLMD... Posts: 75 | From NE Ohio | Registered: Mar 2010
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joalo
Frequent Contributor (1K+ posts)
Member # 12752
posted
1. Wrong.
2. Wrong.
3. Wrong.
4. wrong.
Enough said.
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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i saw an internal medicine doctor recently and he said "oh, you cann't have lyme disease. we don't have that here!" yet didn't even ask what states i have been to! also, we DO have it here. it's EVERYWHERE!!! ticks jump from deer to deer and person to person. people take trips and bring them home with them. to imagine that these ticks stay in one place and they haven't spread to other areas over the course of 40 years is absurd!
i know it's exhausting and expensive to keep going from doctor to doctor, but i would definitely drop this one!
Posts: 220 | From Kansas | Registered: Mar 2010
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posted
thanks for the support.. I only went to him because I haven't gotten much better in the past 3 months, most of my symptoms have gotten worse actually. My family is very worried that there might be something besides the lyme going on.
I figured I'd give it one last shot. The Rhuemi did a ton of blood work (in addition to all the blood I've already had done) so, we'll see..
I tested negative on the lyme blood test and positive on the dot-blot assay (3 day urine), Rhuemi told me that if the blood is negative you dont have lyme, simple as that.
I asked him about the urine test and he said it is not FDA approved, I said so are you telling me that mine was a false positive? He said, it's not FDA approved. I asked him how the lyme antiboties or whatever got in my urine, he just said it's not FDA approved.
I had terrible migraines and neck pain and within the first week of starting abx, they mostly went away and the neck pain is better. He said that it was just a coincidence
I then proceeded to tick him off even more by saying, so you feel comfortable telling me I have fibro, with NO test and I dont have any tender points. But even with multiple symptoms of lyme and a positive urine test I dont have lyme? Yep, I dont have lyme (according to him)
He said that I can go on getting treatment for lyme and I wont get any better. He said that if I go back to him in 6 months, and I am better he will eat his words..
He was educated in another country so I kinda hoped he would have a more open point of view. Guess not..
Posts: 75 | From NE Ohio | Registered: Mar 2010
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posted
it took me three years to find a doctor that would even consider lyme. I was repeatedly given the "its all in your head" diagnosis and symptoms progressively got worse to the point of being bed ridden.been on abx for 6 months and felt terrible from the herxing - looks like this is gonna be a long drawn out horrible ordeal - hard to be strong - I pray every day for strength - absolutely go with your LLMD they are all the hope we've got.
posted
By the way, I've had tons of blood tests at Labcorp and quest, ordered by doctors in Los Angeles. Also blood work at UCLA. Many, many of these test results have a disclaimer saying they're not FDA approved.
I don't really understand it....prior to all of this, I would have thought ANY licensed blood test had FDA approval, but it's not the case.
I wonder if every test your doctor orders is going to be labeled as FDA-approved. I doubt it will. In my experience, it's common.
Posts: 322 | From Venice, CA | Registered: Sep 2008
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quote:Originally posted by Geneal: [QB] M.D. behind one's name does not equate to intelligence necessarily.
It could also stand for Mad Cow disease.
AHHHH!!! So THAT'S it!!!
PS to cityroam. It is expected that you would feel worse after 3 months of treatment. You are herxing to the hills. That may continue for quite awhile.
I can't think of many things worse than Lyme myself.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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posted
"so you feel comfortable telling me I have fibro, with NO test and I dont have any tender points. But even with multiple symptoms of lyme and a positive urine test I dont have lyme?"
Which one makes more sense to you? I think you answered your own question. This doctor's conclusion was not logical and is not correct.
Whether the FDA has approved or disapproved or has never heard of a test, that says nothing about the results of that test.
If you have Lyme symptoms, and then you have a Lyme test that comes out positive, then you have Lyme. If you have Lyme symptoms and your Lyme test is negative, you can still have Lyme. If you have no symptoms at all, you probably don't have Lyme, but there is no way to prove that except the absence of symptoms.
If you have Lyme and your treatment is working, you are very likely to feel worse during the first few months from the "herx" reaction--toxins released when the bacteria die off. That is usually a sign to confirm your suspicion that you have Lyme.
Unfortunately, it can make doctors and relatives doubt you more, because they say, "Why aren't you getting any better then?" And you start to think that too, and wonder if they are right.
But if you stick with your treatment longer, you will eventually start to see signs of improvement.
One of the things typical of Lyme disease is that the symptoms move around your body and change over time, and come and go.
Another issue is that different people have different coinfections and opportunistic viruses or other issues that can cause them different symptoms than somebody else. You both may have the Lyme bacteria in your system but it may look like a different disease.
Don't let people make you doubt your own logic and your own experience. Hang in there with your treatment, and find a good LLMD as soon as possible if you are not already seeing one. Don't waste your time and money with other doctors who won't be able to help you.
-------------------- 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
To be honest, I am not sure what blood test I had done. I guess western blot. Here are the results:
Lyme Total Ab less than 0.91 f 0.00-0.90 Lyme Ab Interp 1 negative Lyme Ab Interp 2 deleted result Lyme Ab Igm less than 0.91 0.00-0.90 Lyme IgM Interp 1 Negative Lyme IgM Interp 2 deleted result
I dont know which lab it was done at but I know it was NOT Ingenex.
This disease has really jumbled my mind and when I have 2 dr's (pcp & Rheumi) tellling me that I don't have lyme I start to second guess everything.
I am not taking any meds for pain, inflammation, sleep deprivation, anxiety etc so I am sure it only adds to the mental drain.
The Rheumi called on friday to tell me my test for Sjogren was positive, but he said it is probably a false positive so he ordered another test to make sure. The results wont be back till next week. I dont have the typical symptoms of it, dry mouth or dry eyes so I dont expect the test to come back positive.
Posts: 75 | From NE Ohio | Registered: Mar 2010
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posted
UUUUGGGGGHHHH, I just want to pull my hair out! The Rheumi called me today to tell me that I tested positive for Sjogren's, they had me do additional test to make sure, and the SS-B came back positive. (SS-A negative)
He says he doesnt really know what is causing the positive SS-B but maybe it has nothing to do with what I have now (not sure what that means) or it could be a precurser to something coming down the road or low grade lupus.
He still says I dont have lyme and he doesnt want to treat me for anything while I am treating for lyme.
I asked him if I were to get treatment from him what would he do. He said he would give me plaqunil (whatever) and see how I am feeling in 2-3 months. If at that time I am not better he'd try something else.. Sounds like to me he is doing the same thing the lyme dr is doing.. Hit and miss..
Posts: 75 | From NE Ohio | Registered: Mar 2010
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Tricky Tickey
Frequent Contributor (1K+ posts)
Member # 26546
posted
Good grief!!!! Is this guy for real, or what? This is sounding more & more like some wildly delusional doc with grandiose ideas who doesn't mind testing the doo-doo out of you, over & over...oh, it's not accurate...let's test again though. Duh. So now you are positive for something & he doesn't know why. Honey, RUN, don't walk to an exit. This just doesn't sound logical. Go with your gut instinct. If it doesn't sound quite right or it doesn't feel quite right, it probablly isn't right, period. I'd love to hear more about this good ole doc. He'd make a great case study!
I hope I don't sound too maniacal myself. Please don't get angry at my rant, I'm just going thru a bit myself! I know this was really sarcastic, but I just spit it out.
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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quote:Originally posted by cityroam1: [QB] The Rheumi called me today to tell me that I tested positive for Sjogren's, they had me do additional test to make sure, and the SS-B came back positive. (SS-A negative)
LYME is probably causing the Sjogren's. I have it too!!
Rheumies are clueless!! Have you been to www.roadback.org yet? They are former and some current RA patients who treat "RA"* with antibiotics.
* or is it really LYME?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
we still have a lot of education to do with most docs. so disappointing.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
So you're standing there in front of the doctor, obviously ill (with Lyme, for which you're being treated), and he runs his favorite tests on you, which come back positive,
and then he tells you that you can't have whatever you tested positive for, or if you do, that your obvious illness is not what made the test come out positive, and the Lyme, which you supposedly don't have, is not causing any of it? And probably it just means that you're about to get sick with something else in the future for no apparent reason?
Therefore the obvious thing to do is to give you NO treatment?
But if he did treat you, he would give you Plaquenil? Which is used for malaria, lupus, and RA, and is commonly given to Lyme patients too? Although you supposedly don't have any of those things?
Sheesh. My head is spinning.
Besides questioning this guy's medical knowledge, it makes me question his connection to rationality.
FYI, Lyme also can cause and/or imitate lupus as well as Sjogren's, RA and other things.
I understand the pressure from family, who say, "You've been on the LLMD's treatment for several months and you're not getting better--in fact, you're worse. Therefore you must need a different doctor."
This attitude is at least logical and shows concern for your welfare, unlike your rheumie's attitude.
Your family just doesn't understand how Lyme or its treatment and recovery work, or why most doctors, except LLMD's, don't know anything about it.
Perhaps if they watched the DVD "Under Our Skin" with you or read the book Cure Unknown by Pamela Weintraub, they would understand it better.
After watching the video with me, my family told me they were glad I persisted in insisting that I had Lyme disease and finding an LLMD, now that they believe that's exactly what I need to do to get better.
-------------------- 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
I went to the LLMD yesterday for my 4 month check up. He agreed that Lyme can cause autoimmune disorders, but he couldnt say what the positive SS-B really means either. I dont have the symptoms of primary Sjogrens (dry eyes or mouth) so what the heck is it.
He switched abx again and said if by the end of July I am not feeling better he might add some steriods to get my swelling/inflammation under control. He said typically he wouldnt give steriods but in my case it might be worth it. As long as I am taking abx. Also he might add an anti-viral because some how I have an active flare of EBV.
Somehow I thought this would be a quick and easy fix, boy was I wrong.
Posts: 75 | From NE Ohio | Registered: Mar 2010
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
Cityroam - At 4 months of treatment, I still felt like crap! My LL doc wanted to order a ton more tests - blood clotting, genetic profiles of detox pathways, hormones, other stuff I can't even remember. All out-of-pocket, of course.
They were fine ideas, actually quite good, but I declined. I knew I just hadn't been in treatment long enough to see a difference. 4 months of treatment is the equivalent of sticking your toe in the water! You have a long way to go. (Sorry for the reality check, but it's true.)
The fact that you are feeling worse is a GOOD sign. (Another sad reality.) Microbes are dying and creating more inflammation and more symptoms. But that is the goal, to get rid of the infection.
Do not suffer needlessly. Many require pain meds. Most Lyme patients I know are doing well on Gabapentin, 100 mg, 4x/day. But it's different for everyone.
Post here (in Medical Questions) for advice on steroids. Giving a Lyme patient steroids is only for serious emergencies (like in the hospital, with a life-threatening inflammatory cascade in progress).
I know this sucks, because you feel so awful, but you must educate yourself and be your own advocate. Letting doctors diagnose and prescribe willy-nilly is dangerous for you. (I know. It's their jobs. But they don't do them well with us.)
If you have a good Lyme doc, ask for her/his opinion on why you are a candidate for steroids. Think about the response. Some of us take very low dose cortisone (Cortef) for adrenal support, but never an amount that would treat systemic inflammation. That would wreck your immune system and seriously impair your progress.
As for the EBV, most of us have that as well. I chose not to treat mine with antivirals. I just continued treating my Lyme until my immune system could take on the EBV.
You are in for a long haul, but you can get better.
Something to keep in mind about doctor visits - the more desperate you seem, the less the "standard" medical system will take you seriously. It's stupid, but true. They will write you off as "emotional" or "depressed." (And those are the good words!)
In Lyme, the more desperate you seem, the more labs and meds the doctor will throw at you. You have to be completely honest about your symptoms to get the best treatment. If you say "I'm in so much pain I want to die," your doctor will likely try anything to help you. Even steroids, knowing they can be dangerous.
If you say "My pain is a 7 on a scale of 1 to 10, and it sucks but I can function," your doc will be much more relaxed and rational.
Many Lyme patients have told me they feel they get the best treatment when they are less emotional at their visits. I'm not saying you can't have your feelings around this disease (because it really sucks), but that you may want to keep them out of the doctor's office, to some degree.
posted
Stop going to this doctor, he doesn't know what he is talking about regarding lymes disease.
Posts: 41 | From astoria, new york | Registered: Feb 2010
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posted
Unfortunately this is similar to what I went through. Both bites were in Ohio.
My rheumy and PCP are in same office and told me that the IGenex test had been "mis-interpreted". Well, three other doctors and an administrator at IGenex - I know they are wrong. Interesting enough after canceling/postponing several follow up visits, neither of them said a word about Lyme at my last visit. Hmmm...
Keep reading posts on sites like this and research as much as you can. Stay strong.
Also, I felt worse at first and herxed with Flagyl, but seem to be feeling better. Hope it lasts...
Posts: 31 | From Southwestern Ohio | Registered: Feb 2010
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posted
MY LLND said if you feel better or worse it is good...no change at all is not good.
Sometimes there are toxic impediments for the tx to work or even genetic. Which can be detected.
This "md' sounds incompetent plain and simple. I echo all the learn and read here and stick with your LLMD.
They are rare enough and a lifeline of help and hope.
but i will be fair to say that wihtin the context of my own care history nearly all helped some but some also harmed in their ignorance. Steroids! Yikes!
-------------------- Not everything in life that can be counted counts and not every thing that counts can be counted...Albert Einstein Posts: 208 | From Northeast | Registered: Aug 2010
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
I hope when you feel better that you go back and watch him "eat his words".
And I'd like to come along. We all would like to come along and watch!
When I feel better (and I'm gettin' there) I plan on going back to the Rheum duck I saw and watch him eat his words.
I had a tick and a bull's eye and he said I didn't have lyme. I had lupus. Hmmmm, lupus from a tick? Wow, what a smart duck after all!
But they need to know how many people they've wronged and how will they know unless we tell them?!!!
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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posted
Why in the world would he order tests just to not put any stock in them because theyre not FDA approved?? Why bother?? M.O.N.E.Y. Hes a stinkin fruitloop.
Posts: 624 | From Oklahoma | Registered: Jun 2010
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