posted
Got my Igenex results today. Negative by CDC standards. LLMD says can start ABX if I choose to. Any advice on my results are appreciated. Here thay are:
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years. Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG."
And this:
"83: This is the DNA or genetic material of Borrelia burgdorferi. It is the same thing as the 93, based upon the medical literature. But laboratories vary in assigning significance to the 83 versus the 93.
93: The DNA or genetic material of Borrelia burgdorferi. In my clinical experience, if a patient has symptoms suspicious for borreliosis, and has one or more of the following bands, there is a very high probability the patient has borreliosis.
These bands are 18, 22, 23-25, 28, 30, 31, 34, 37, 39, 41, 83, and 93. This is true regardless of whether it is IgG or IgM.. "
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
You need to be tested for coinfections to round out the picture but there does seem to be evidence of Bb infection in the test results.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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Thanks for the replies! I'll check out the links. I appreciate your quick response. I will probably call my LLMD on Monday to go ahead and start the ABX. It's definitly worth a try.
I think they tested me for co-infections. They took 26 vials of blood from me 6 wks ago. When she went over all of the results, my brain fog set in, so I cant remember a lot of what she said. Guess I'll ask them to fax me all of my results on Monday.
She also suggested 4 other specialists to explore other possibilities. BUT, I'm so drained from going from DR to DR that I just dont know if I want to. I think I'm going to try the ABX first and just see what happens.
Thanks, again, so much for the advice!!! Have a great day!!!
Posts: 28 | From NC | Registered: Mar 2006
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BostonLyme2005
Unregistered
posted
Hi,
You have some bands that suggest exposure to Lyme......... Get yourself tested for co-infections, I did this week.......... You'll call your LLMD on Monday???
"Don't Put Off Until Tomorrow What You Can Do Today"! Call Friday and have them call you in some meds TOMORROW!
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
NEVER trust the doctor to keep and interpret your labs entirely. ALWAYS get copies of all of them. I cannot count the number of times a single doctor misinterpreted a test. Be well
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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I have to wait until Monday to call the LLMD (actually she is an LLNP) because they are closed tomorrow for Good Friday/Easter. I left their office at closing, so I was rushed out at the end. She went out of the office to write out some suggestions for me and said she would be back to answer more of my questions. BUT, she didnt come back in, her nurse did and sent me to checkout. I only had time to get a quick copy of the Igenex results. So, I'll have to ask them to fax me the rest of the results on Monday. I'll find out then, too, if she tested me for co-infections. But, any future appts I make w/her will be in the morning and NOT near closing time.
Waiting over the long weekend will be a challenge. Especially since I had to wait 6 weeks for my Igenex results. I'm tired of being a patient patient!! But, I'll sit tight and try and wait, no other choice.
BTW, my sister (she has Lyme) told me that if your specimen sits at the lab over the weekend it can weaken it and cause a false negative result. I had my lab taken on a Thursday, Igenex received on Friday, but didnt begin to look at it until Monday. So, 5 days, roughly, before it was processed. Anyone hear about specimen weakening over a few days and causing a false negative?
Thanks again everyone!! All of you are such helpful wonderful people!!!
Posts: 28 | From NC | Registered: Mar 2006
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posted
That's a good idea, thanks! I think I will call Igenex and ask them. They might tell me it's ok to sit a few days either way because they dont want to look bad. So, not sure if they will give me an objective opinion, but it's worth a try. Thanks for the suggestion!!
Posts: 28 | From NC | Registered: Mar 2006
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bettyg
Unregistered
posted
Tiff, ask them to FAX your MD results and follow-up with a written copy. Mine were lost until I pursued after 4.5 wks.
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posted
Well, I called my LLNP yesterday, and of course, they wont let you talk to anyone except the triage (sp?) voice mail. And, of course, no returned call yet and no meds called in to the pharmacy. They never return calls, in my experience.
The LLMD is almost impossible to see, so I have to see one of the LLNP's. She is fairly new to the clinic, from what I understand. So, I'm wondering if maybe I should get a 2nd opinion. It doesnt seem like she wants me to be treated for Lyme. She seemed more like she was trying to talk me out of treatment. She said i could try the treatment but it would "get worse before it gets better". I know this. She just acted like she didnt want to give me the ABX. And she didnt. So, now that I decided to take them, I cant get a call back from the office. (I do like her tho, she seems like a very nice person. She just doesnt seem too into getting to the root of my problem. Instead she wants me to see 4 different types of specialists. Crazy!)
Should I just try to see the LLMD at that clinic instead??? Any suggestions on what I should do??? Thank you!
Posts: 28 | From NC | Registered: Mar 2006
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Usually specialists are used to rule out other things. Depends a lot on your symptoms etc whether this is a waste of time and money.
You could have other health problems besides Lyme and tickborne illnesses.
It is your choice whether or not you see the specialists -- some docs send you to a specialist just to get rid of you. Others send you to get a 2nd opinion or to rule out something serious like heart disease.
If the doc is not willing to discuss why she wants you to see the specialists then I would be concerned. Also, many tests can be ordered by an LLMD or PCP and then you only go to see the specialist if your test results are abnormal.
You are just going to have to go with your gut feeling on this. You have to be able to trust your doc and get your questions answered.
If you have access to a FAX machine, fax the doc a note and ask for copies of records and that scripts be called in. I have found that usually you get a better response to a written request than to a phone call.
Good luck.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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quote:Originally posted by seibertneurolyme: If you have access to a FAX machine, fax the doc a note and ask for copies of records and that scripts be called in. I have found that usually you get a better response to a written request than to a phone call.
[/QB]
An excellent suggestion. That way they have it in writing that you asked for abx.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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She wants me to see an OB/GYN and a Reproductive Endocrinologist, both to rule out polycystic ovarian syndrome.
Also wants me to see a headache specialist to be treated for "hormone headaches" which I dont even have. I have a daily tension type headache, 24/7, for over 12 years, so, I know my headaches are not "hormone headaches" they are no where near the symptoms I've researched on it.
Also wants me to go to a sleep clinic. She wont let up that I may snore. Believe me, my husband would let me know if I snored. But she also wants to see if I actually do have restless leg syndrome.
Oh, and I forgot she also wants to send me to a Rheumatologist (sp?) to help with joint pain.
She also mentioned at my first appt with her that maybe I should see a Neurologist to see if I have a neurologic disease that would be causing a lot of my problems. BUT, I've been to a few Neuros thanks to my daily headaches, and no one ever mentioned this as a possibility.
I dont know, I'm just tired of DR's right now. I'm tired of not getting anywhere with any of them after 12 yrs of trying.
Maybe God just made my body a lemon. Do you think God would switch it for a new one under the Lemon Law??? Posts: 28 | From NC | Registered: Mar 2006
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posted
P.S. Great idea you suggested on faxing my request. I never would have thought of that! I will definitly try that!! Thanks again!! Posts: 28 | From NC | Registered: Mar 2006
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