Lyme Disease Community
Not Lyme now?
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This forum is for questions and support regarding What Causes Lyme Disease, Diagnosing Lyme Disease, and Joint Pain. Topics for discussion also include Living with Lyme Disease, Babesia, Bartonella, Rocky Mountain Spotted Fever, Anaplasmosis, other Tick Borne Diseases, Nervous System issues, Prevention, Risk Factors, Skin Disorders, Symptoms and Treatments

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Not Lyme now?

Ufff, ok so I went to the only lyme treating doctor in my town and he is an infectious disease doc. He says that even tho my test results were IGM/CDC positive and IGG WB positive and CDC IGG negitive (only missing one positive band to be CDC positive) I may not have an active infection of Lyme disease and my symptoms may be from something else, of course he didn't have any idea what else it could be. :(
He said that because my IGM was so positive and my symptoms suggest a more chronic stage of Lyme, and I lived in an area of outbreaks, the antibodies that I have could be from getting exposed to the infection rather than actually having it. :(
I know he does go by CDC criteria but I was looking at it and I dont really have any of the MAIN symptoms of Chronic lyme disease. I have all of the additional. Plus he said that the symptoms that I have in my extremities, if I had lyme that there would be nerve damage, and my EMG was completely normal.
He also said that for my amount of neurological symptoms my EEG should have had disturbances and mine was within normal limits. He also pointed out that while I have severe joint pain in my elbows knees and hips, there is no swelling and I should have swelling but I dont just pain.

My neurologist says it's not in my brain, there is nothing neurological going on. My LLMD says that my results point to a chronic case of lyme. My ID doc says its something else. And my primary care doc can't find anything wrong!
Now what??

The ID doc ordered another lyme test but it's not through IGENEX it's just through what ever lab they send it to. And last time we did this, the test got sent to a generic lab in phoenix and it took 24 hours. I am going to make sure that THAT doesn't happen again. He said that if the test is about the same he will start me on 28 days of IV pennicilin and if it's negative then it's not lyme. :( UFF what else could it be.

Another strange thing is that my periods have always been super heavy and very inconsistant, lasting from 7-9 days. Sometimes I'd skip a month or it would be 2 wks in between. Accompanied by very bad cramps.
since my symptoms started in april, my periods have been right on the day and very light minimal cramping and only 2-3 days long. But unlike before I emotionally PMS really bad now. Anyone heard of this? Maybe not with lyme but with any similar problems?

I think my plan now is to get the other lyme test done, see a rhematologist ( I haven't seen one before) and maybe a hormonal doctor( dont know what they are called) and a immune system doc (everything in my genes points to a autoimmune disorder, plus my little sister has many of the same symptoms as me. This may be just sympathy or it's real. The same sister also shares with me basilar migraines and dry skin, adnoid (adenoid) problems, we are way shorter that anyone else in the family, both sensitive to heat. It just seems too much to be coincodince since I have 2 other sisters and neither of them have any of theses problems.) Also have another MRI for MS. Maybe we shouldn't rule that out yet. And I would like to get with that LLMD again to see her take on what the ID thought.

Any suggestions?
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7 Comments Post a Comment
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237053_tn?1258832026
Wow.  I don't even know where to begin.  First, ID doctors are known for underdiagnosing lyme.  They don't know ****.  You are CDC positive and you are showing clinical symptoms!  You should be being treated ASAP in my opinion.  It's a no brainer!  Not every person who has chronic/ late stage lyme will test POS on the IGG (which is more diagnostic of late stage).
Do the other lyme test, but don't throw your CDC Ignex out the door!  I still think you need to see an LLMD.  They would diagnose you and treat you.
And I think the fact that all your tests have been NEG/NORMAL makes it even more likely it's lyme.
I do think it would be a good idea to see a RHEUM and ENDOCRINOLOGY (hormone dr) to rule out other conditions.  
Did you see a civilian ID or was it a base dr?
I'm sorry you are going through this.  It seems that EVERYONE who has lyme goes through the same thing.  It's tough, but you have to take your health in your own hands and keep pushing.

Keep us informed.

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237053_tn?1258832026
OH and the joint thing...not all lyme patients have swollen joints... just pain... it just varies...
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Avatar_f_tn
I agree with skarey ... seeing an LLMD very soon is probably the best thing you can do, if indeed you do have Lyme.  

Because being an LLMD is not a qualification, any dr can say they are one and can say they treat Lyme, but the drs and the treatment plans are all over the place.  Try the ILADS dot org website for a referral.

And don't be discouraged -- or rather, accept that you are discouraged, on top of being sick, and know that's it is part of the deal.  We have all of us virtually without exception gotten the runaround in one way or another.  

The more time passes, the harder it is to treat Lyme.  Keep plowing ahead.
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Avatar_f_tn
I've never heard that you "must" have swelling to have Lyme, or a normal EEG is proof that it is not Lyme.  Wierd.  As an aside, the ID dr. I saw with my CDC positive IGm test (remember, IGm shows active infection) swore up and down that it was "probably a false pos" and whilst he was saying this to me, he was writing on a post it note "IV Ceftriaxone for at least two weeks" and handed it to my husband.  He kept saying "any dr. can do this for you." And then he left the room.  

ID drs do not want to deal with Lyme. They just don't.  I love it when they say "it isn't Lyme, it's something else", but they really never pin down what that "something else" is, do they.

Have you had coinfections testing, done through Igenex?  Bartonella and Babesiosis came with my Lyme.  They like to travel in groups.  I agree with the above ladies.  Find a dr. that will help you with your Lyme.  
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280418_tn?1306329510
AGREE AGREE!  LLMD you go, girl.  The ID is not going to "let" you have it, period.  He doesn't want you to have it.  My results were CDC positive IgM CDC negative IgG also.  I have burning neuropathy - terrible pain.  I went to Johns Hopkins and got a skin biopsy to diagnose small fiber neuropathy b/c all my EMGs would come back normal.  Well, the test came back "normal number of nerve cells, but with excessive segmenting and fraying:  Overall, normal biopsy."  To me, that's not normal AND the pain I have is not normal, so what is all the talk about "excessive segmenting and fraying"?????  I also asked them to run a Lyme test b/c I kept thinking back to having those ticks in my scalp 20yrs ago.  They did.  Never said any of it was abnormal.

I called and asked for a copy of my records from Johns Hopkins and they sent a portion of them.  All normal, except, POSITIVE ELISA FOR B. BURGDEFORI.  It was not followed by a page about a western blot.  I called and faxed and groveled until I got my WB back - "negative".  No bands, no nothing.  They never gave me specifics on the WB, even though I asked and threatened with legaleeze that it was my right.

On that note - parts of your records will get lost, they will lie, they will convince themselves, whatever it takes so that they don't have to risk their license and, God forbid, honor the hypocratic oath they took as docs.  (sorry, a little bitter here).

My point is, do not take his word for it and you are NOT alone.  We've been through this too.  Expect it and then when they actually listen - you'll be pleasantly surprised!  I have doubted and wondered and all but researched myself into a frenzy over this and I keep coming back to Lyme or stress.  The only "abnormal" tests I have are for Lyme.  I can't even deny this fact.  Yes, I'm stressed, but it makes symptoms of any disease/illness worse, so I can't quite pin it on that.  I have friends and family that don't believe it, but I'm over that - it's my body.

Take care and be vigilant.  Get to an LLMD and don't waste your time.  If the LLMD says no way, then you can write Lyme off.  (maybe - lol)
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904511_tn?1251223333
Thank you all for your responses. I know this about the ID and if your results dont scream lyme with a live tick and rash they dont want to consider it. I did a whole bunch more research and this is what I think...
The IgM antibodies are for an acute infection, these are the antibodies that are created in the first stage and few months of the disease. I know that the number of these go down as the disease progresses and they are also harder to find. Is it true tho that if you were bit several years before hand, these antibodies could still be in your system and hiding? I also read that the IgM antibodies are mainly in large quantities with the new and active infection and can also be found in high quantities in an existing reactivated infection.
The IgG antibodies are the ones you see once the infection has been going on for some time or if you have had an exposure to the infection.
So in recap, if I got bit by a tick with Borrelia burgdorferi several years ago, and my body was either to fight it off or it hid, so when i went through that really hard time before April, the infection came back and the IgM antibodies were reproduced in high quanities and the IgG antibodies were the ones that were here all along. So it WOULD make sense that if the lyme reactivated itself and reinvaded I WOULD have a larger number of IgM antibodies....correct? Pointing to a new infection while my symptoms have progressed to a chronic or late stage of Lyme. Which would make the ID doc lean towards something else.
Wow I am actually impressed with myself for understanding this, makes it less scary.

Now, if the new lyme titer is reliable, and if my condition is like I said above, the results should be about the same. If the test is reliable and I do have something other than lyme and i have just been exposed to Bb, what would my results show...to me it seems that with the results only a month apart they would still be the same.

I have not been tested for coinfections, I brought this up to him but he said I showed none of the symptoms of them so I didn't need to.

I have gotten the referal list from iLads but the struggle is to work around my insurance with my primary care doc to get it covered. Plus they are all in California.

Thats good to know about the joints. I keep watching them closely to make sure I dont have any swelling. I'm scared of arthritis.

Skarey: I did you ever go to an endocrinologist? If so what did they test you for? Is there anything that they has suspected rather than Lyme?

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Avatar_f_tn
This is what I figured would happen as I posted to you on another thread.  The doctor you saw does not seem to be lyme literate to me based on what you posted.
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