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What do you guys think about what my physician had to say?

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Posted 2/18/2014 3:40 PM (GMT 0)
Man oh man, It's totally clear how bad our health system in the U.S really is? I am seeing a LLMD in a few weeks, and I'm going to drop my physicians for now, but I thought I would share with you guys this. My doctor said this, based on my symptoms and having a positive p.41 ban d that my band was for sure a false positive, and said that the testing through Igenex is unreliable because they have a abnormal amounts of positives. She then said she thought my problems are neurological and that I need to see a neurologist. Despite the fact that I'm a young 22 year old male, I have a clean MRI of my head, and out of both sides of family, there's only one person with a neurological problem, and it's my aunt with mythenia gravis, and she's only a half Aunt, which I feel puts my chances of having something like that pretty low.. For some reason, I feel like I should totally skip seeing a neurologist .. and just go straight to the LLMD. What's with this horrible direction from doctors?
Posted 2/18/2014 3:48 PM (GMT 0)
I also had a positive IGenex, with many bands. The LLMD I saw in Dec '13 also said it was fals neg and that IGeneX has a lot of those. She wouldn't even offer me a clinical dx, but she did say I was 'only depressed,' and that if I took Celexa, "all your symptoms would go away." Really? Hmmmm. I no longer see her.

I would see the nerologist IF insurance pays for it, otherwise, I wouldn't bother. Just go with the LLMD you have scheduled. If you are dealing with many/some neurological issues, then the LD is probably in your Central Nervous System. I do not know if this would show up with any tests a neurologist would do.

Crazy, isn't it? All this back and forth, no you don't have Lyme although you have a positive test, but not from the labs that these quack Dr's believe are accurate.

A positive IGeneX is indeed a positive Lyme dx.

Hang in there, keep moving forward, and try to take this one day at a time, and sometimes, one second at a time.

This great group is here for you!
Posted 2/18/2014 3:56 PM (GMT 0)
I wouldn't even bother with the Neuro unless they are Lyme literate, I mean why put yourself through the extra aggravation?

When doc's say these "crazy" things, it's usually because of one of two things - either they are holding the "party line" (CDC/IDSA), or they are just quoting the books that they learned from and some rumors that they have heard from other docs.

Igenex does have an unusual amount of positives!!! They are a tick & tick-borne disease testing lab!!! They don't do all the other testing, so of course they have a high amount of positives coming from there - not to mention that since they are a tick-borne disease lab, they have discovered the best mediums to test with, test for the most strains of the Lyme bacteria (although it's still only 4 or 5 of them), know how to read the tests properly and how to handle all the equipment properly for the most accurate testing.

Crazy, but if one realizes that regular docs are not only very uncomfortable with this set of infections, but are scared of those who know more about their infections than the docs do - it begins to make some kind of crazy sense too.
Posted 2/18/2014 5:55 PM (GMT 0)
I would skip the neurologist as well unless they are an LLMD. they are about meds and testing...lumbar puncture, EEGs, balance testing, MRAs, and you have already had an MRI. My neuro has thrown so many meds at me to control symptoms and has looked under most rocks to find the cause, but is clueless when it comes to Lyme. Prior to learning about the importance of LLMDs, I also saw a second Neurologist that was supposed to be " a Lyme specialist" at the very prestigious Columbia Univ in NYC. Another dead end that was costly in $ and more importantly time and more testing blah!! The only thing I have learned from the 13 docs and 6 months of searching for answers (prior to my LLMD) is that just about every illness under the sun was ruled out and the only one left standing is Lyme. So I'm confident I found the culprit even though the docs are less than enthusiastic about my dx.
Good luck with your treatment.
Dawn
Posted 2/18/2014 6:25 PM (GMT 0)
What a coincidence, my nonLLMD told me almost the exact same thing. They dont really believe in chronic lyme and think that if you have 2 weeks of abx you are healed. I skipped the neuro.
Posted 2/18/2014 7:57 PM (GMT 0)
John Red, If you have insurance, I would recommend that you see a Neurologist just so that you can get an MRI done of your head. It will be great to have this for comparison as you battle the infection. Oftentimes, people will see lesions in the brain as well as impact to the blood vessels. If your infection worsens, it would be great if you had this MRI for comparison down the road.
Posted 2/18/2014 8:26 PM (GMT 0)
My nonLLMD told me after a CD57 and IGenex test and consulting with an LLMD she would not treat me if I have lyme (worried about treatment harm and her license and yet she has drug me along for 5 years down all these other paths trying to figure out what is wrong, ruled out just about everything but would test me for years until last October, one month after being terminated from my 20 yr career). If you have the MRI already not sure about further neurologist visits, your call. You sound like a sharp cookie. Sad you are having to experience what we have all been enduring, I wish the situation were different for all of us. We are being abused by the medical system because they dont want to face what they dont understand or wont take the time and effort to understand. I am so angry we all are going through this. People think we are crazy and yet you read the stories here and other than symptoms varying by person a bit we say virtually the same thing, we dont know each other, this is not group think, this is our real life experiences and we are being cast aside!!! You are very smart and young, hoping you get better soon.

As a percent of the population why cant we get erad and helped, what do we need to do differently to help the doctors that help us and to get the word out? I know there are so many afflicted, how do we increase visiability.
Posted 2/18/2014 9:02 PM (GMT 0)
I naively saw a neurologist who also basically said I was crazy. He too did not believe in lyme disease after initial treatment etc. I laid down on the table he tapped here and there and announced I was fine.

Lucky for me my PCP thought I had a brain tumor so had already ordered an MRI which I had in my possession. So at least I had that prior to be shuttled out the door of the neuro's office (HMO).

Fool that I am I saw another neuro (HMO) who seemed to understand lyme and gave me the name of Dr.s who knew more....they were the Westchester county non ilds doctors who do not believe in long term lyme! needless to say after I googled them I realized there was no point in seeing them.

Finding a good neuro guy is hard, although some who specialize in MS sometimes understand the connection with lyme. At least one that I know of in NY.

LLMD is the only way to go.
Posted 2/19/2014 3:19 AM (GMT 0)
Ive been doing a lot of research on band 41 lately. Even though its technically only indicative of an exposure to a broad range of flagellum, it really needs to be handled far differently if you ask me.

In all of the CDC control groups it was the single most common band found in all of the confirmed Lymies. It was also the most common band to appear in the first stages of Lyme. Due to this and knowing how time-sensitive and incurable this disease can be, a doctor needs to immediate suspect Lyme and treat it aggressively.

If I saw this band as a doctor, my patient would immediately be on precautionary ABXs until it could be confirmed that they didnt have Lyme.
Posted 2/19/2014 3:29 AM (GMT 0)
I am not a confirmed lymie, just suspected , but I did have an IND 41 on IgM and positive 41 on IgG. Had other pos and INFections but did not add up to confirmed positive.
Posted 2/19/2014 9:23 PM (GMT 0)
I'm wondering, if I was Probably infected years ago, if that's the case, why am I showing positive for p.41 Igm which is recent infection?
Posted 2/19/2014 10:14 PM (GMT 0)
Remember the tests are looking at antibodies, so your immune system could be tackling the infection anew once again, thus creating an IgM response. This is actually much more common that is realized by most.

Vcast said:
"In all of the CDC control groups it was the single most common band found in all of the confirmed Lymies. It was also the most common band to appear in the first stages of Lyme. Due to this and knowing how time-sensitive and incurable this disease can be, a doctor needs to immediate suspect Lyme and treat it aggressively.

If I saw this band as a doctor, my patient would immediately be on precautionary ABXs until it could be confirmed that they didnt have Lyme.

AGREED!!! Even though there is no test that will prove that a person doesn't have Lyme, I would still agree!!

Back before the CDC actually backed the IDSA, on their website it actually said that Lyme was a clinical diagnosis with the tests to be used to hopefully confirm the clinical diagnosis - instead of the other way around. This is the way any LLMD worth seeing will treat - at least IMHO.
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