posted
I was just diagnosed with Lyme a few days ago, after having gone to the Dr. for nearly a year with many symptoms that are affecting my life!
Mostly extreme fatigue on and off, and a feeling like I'm always coming down with something, but never really do.
Dizzyness, foggy brain, really sore muscles in neck, shoulders, headaches all the time, jaw pain, feeling of unsteadyness sometimes, etc. the list goes on.
I was told I had anxiety issues and too much stress causing all this, but the Dr. ran a Lymes test when she ran a a few others the last time I was in because I wasn't getting any better, and it just came back positive.
I don't understand how these tests work and I can't believe I'd have Lymes!
I asked her if this could be a mistake since my son was first tested positive and then the Western Blot was negative.
He actually had a tick bite that was red for several days plus had been dealing with fevers, headaches, body aches, neck pain off and on for quite some time.
I looked at my test results today, and it seems I had my test sent to CA for an IFA which I tested positive for antibody titers at 1:80.
The IGM is Positive from IGENEX but negative for CDC. My Igm results are: 18+ 23-25 IND 31+ 34+ 41+
My IGG was Negative both IGENEX and CDC: 41+++ 34 & 39 IND.
I don't see how this could be positive for Lymes when I don't have 5 or more positive and hardly any positive on the IGG test at all.
I'm wondering if I should also have my son retested though because his test was done at Mayo, where they test only a few bands?
Even though his initial test was positive he got a negative Blot from Mayo with only 41+ on his IGG and none positive on his IGM.
Yet he has more symptoms indicative of Lymes than I do!?? Anyone have any input??
[ 15. March 2008, 06:55 PM: Message edited by: along151 ]
Posts: 8 | From MN | Registered: Mar 2008
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posted
I forgot to say that my perscription is Doxycyclene 200 mg 2x per day. Is that about the norm? I'm supposed to go back in for another blood test in 3 weeks, but keep taking the meds for 6 weeks.
Posts: 8 | From MN | Registered: Mar 2008
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Please get tested for viruses too.... See viral testing here at lymenet.
posted
You might want to research microwave sickness, too (see my signature below).
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tailz
Unregistered
posted
You might want to research microwave sickness, too (see my signature below).
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Welcome to the board. You do not need 5 bands to be positive. The 5 bands were set up by the CDC to be used to track the number of Lyme cases. It was never meant for diagnosis and should not be used for diagnosis.
If your son has symptoms, then yes, I would get him tested through Igenex.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
Along 151, Your symptoms sound identical to my symptoms and I was just diagnosed 3 weeks ago with Lyme....
I tested postive for the IgM antibody and negative for the IgG.
I have been on this board the whole time learning as much as I can. Everyone is very helpful when you have questions.
My first med regimen was Doxycycline 100mg BID but I have since seen a NP who treats Lyme and have been put on the Doxy and Biaxin combo for 2 months.....
You are welcome to private message me as well since you are new to this, we may have some of the same questions.
I wish you luck.... take care!
Posts: 27 | From Florida | Registered: Mar 2008
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
Read Dr. C.'s explanation of the western blot here in medical and you will see that you have lyme specific bands that are positive. Dr. J. says if you have band 18, you have lyme.
the newbie links have great information.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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posted
Thanks for the replies, I'm not liking this diagnosis and am just skeptical or maybe trying to find any excuse for it to NOT be lyme and be something else.
I guess I just don't want to beleive it's true. . . .
I am going to take my son in on Monday and see if I can talk her into getting his Western Blot redone at the same place mine was done.
I've read that the one at Mayo is not a good test, since he did show positive on the initial screening already.
He's been having periodic fevers accompanied by headache, neck pain, chills, and complains he hurts everywhere in his joints and muscles.
He was just diagnosed with an autoimmune disease and has both a neutrophil antibody and an antineutron antibody (ANA) that has no explanation.
I sure hope Lyme is not positive on him, but I think I had better check into this!
Thanks for all your replies, it's going to be a lot of reading for me to figure all of this out!
[ 15. March 2008, 06:56 PM: Message edited by: along151 ]
Posts: 8 | From MN | Registered: Mar 2008
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Nobody wants to have Lyme...
I just wanted an answer to what was causing me to feel like I was dying...slowly.
For your info....I had a Quest lab Western Blot done.
Only positive band was IgM 23.
However, remember always that Lyme is a clinical diagnosis.
The blood work is only supportive of symptoms.
If you have symptoms and that Western Blot...run don't walk to the
Nearest Lyme Literate Medical Doctor...and take your son with you.
He sounds highly suspicious of Lyme especially if he had a positive
Elisa and those symptoms.
Sorry you need to come here and join our club.
Consider that now you know what is wrong with you, you can go after it.
Also note that according to my LLMD the fewer bands present
Usually the sicker you are. The bands are measuring your immune
System's response to Lyme. More bands mean your immune system is trying to fight.
Less....well you are one sick puppy.
Hang in there. It isn't a pleasant journey, but it order to get to the
Other side, you have to go through it.
If you are not sure about a LLMD, please post in the Seeking Doctors section.
Please let us know if we can be of any help...
BTW, how old is your son?
My 4 and 6 year olds have been diagnosed and are being treated too.
Along with my husband and myself and 11/12 neighbors!
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Lyme testing is poor at best. Viral infection and lyme infection give identical symptoms...the symptoms that you describe. You want to get tested for both and see what is most likely.
Apparently, viral infections can give false positive IgM western blots for lyme.
So, since you've had more bands on the IgM and few on the IgG...and you've been sick for some time, you should get tested for viruses too.
You need to figure out what your sick with prior to treatment, or you will end up with the wrong treatment.
Do the reading above as I've suggested.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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I started to get worried when he kept getting fevers all the time.
After checking his medical records, I noticed his WBC was always low, like in the 3.4 - 4.0 range.
Then with the fevers came the headaches, aches, pains, muscle soreness etc.
I demanded he get tested for something as I knew those low WBC were something to look into.
He tested positive for ANA (antineutron antibodies) which is basically a lupus test.
At this point is WBC was down to 2.1
Dr. says kids dont' get lupus so they sent me to an rhumatologist who said it's not JLA.
They then did more work up and his lymes came back positive, but then had a neg WB from mayo so they ruled lyme out.
He then was referred to an oncologist who tested further and found another antibody, an antineutrophil that was attacking his WBC.
So she diagnosed him with autoimmune neutropenia.
But, I'm not quite satisified because the symptoms he's having are not following the autoimmune disorder at all!
That disease makes him very suseptable to infections like colds, flue, sinus, skin infections, etc. anything that takes WBC to fight.
In fact he's in bed right now because he has a headache, he says his neck feels broken and he hurts everywhere and feels sick.
This has been going on for months and months I can't even remember quite for sure when it started, but I do not think it's from autoimmune neutropenia.
In fact his last blood test, his WBC was 13! The highest it's ever been. And the test before that was 11, so it has been good.
These symptoms he has right now and has been having though are making me think I need to have them retest his lyme.
Is there any other parents on here that have kids with lyme that can tell me what their symptoms are and when they started and how they progressed??
Thanks so much for all the help.
Posts: 8 | From MN | Registered: Mar 2008
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bettyg
Unregistered
posted
quote:Originally posted by along151:
My son is 7 years old.
Is there any other parents on here that have kids with lyme that can tell me what their symptoms are and when they started and how they progressed?
151, i'm not a parent with lyme but will give you the list of symptoms that our wonderful member, geneal, compiled below this.
since you want parents input, may i suggest you edit your post: newbie parents wants to compare symptoms w/your child.
to edit, click paper/pencil icon to right of your name, which opens up subject line and body text. make changes or however you wish to word this.
go to lower left hand corner, mark box for all replies to come to you, and click EDIT SEND; done! good luck.
i'll send you the children's symptoms list before i forget.
2nd thought, did you receive my newbie package either last night or today? IT'S ALL IN THERE, and it has a table of contents now for easier finding things....
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If your son had a known tick bite, a rash, and was elisa positive, plus the symptoms the you described, then it is very likely that he does have lyme.
I understand your reluctance to accept this dieagnosis, but delaying treatment only allows the infection to progress further and become harder to treat.
As to symptoms for kids, the transient, short term flair ups are typical of lyme.
Everything that you listed for your son can be associated with lyme, and it is possible that other symptoms are present as well, that your child is too young to recognize, understand or explain.
For example, my son, age 5 at time of diagnosis, did not know what a headache was, so he couldn't tell us that he was having them. Only after seeing that he was out of sorts, then asking him body part by body part what was hurting, was he able to say that it was his head.
I would strongly recommend that you find a lyme literate doc (LLMD) for yourself and your son, and have him tested again via IGENIX.
I wish you the best, kp
Posts: 394 | From tinton falls nj | Registered: Jul 2007
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Dear Along,
Your bands leave little doubt that you have lyme.
NOTHING else in the world cross reacts with band 31. NOTHING!!! Only borrelia burgdorferi (the bacteria that causes lyme disease.)
If you'd been tested at a crappy lab (like your son was), you would never have seen most of those bands -- at least bands 31 and 34 would have been noticeably absent, and likely many of the others due to poor quality control.
You are only a HAIR away from CDC positive - that IND means if it had been a shade darker you'd be CDC positive. But again, that doesn't matter, you're positive enough.
NOW, all that aside, HOLD THE MAYO.
Find an LLMD.
Mayo will never get you or your son or anyone else better from lyme disease. They're famous (or INfamous) for their inability to deal with it. Do a search on here for it.
They wouldn't find lyme if it was staring them in the face. In fact, they'll look for ways to DISprove lyme, as we've seen in the case of your son. When it should be clear from his positive ELISA (a miracle in itself) and his clinical presentation. Lyme is supposed to be a clinical diagnosis. They are not supposed to put their efforts into DISproving a positive ELISA and positive presentation, particularly in a child whose mother is positive.
SHEESH.
PUH-lease find an LLMD. It will save you both a lifetime of misery!! We kid you not! Mayo is great for people with OTHER diseases, but AWFUL for lyme.
Good luck. Keep reading and learning!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
Amen to everything Michelle said.
If your son had a positive Elisa, then it really doesn't matter if he had a positive Western Blot. It's very lucky he even had a positive Elisa.
Especially since you said in your post that he had red around the bite.
-------------------- 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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