What does my test mean? And...feeling worse after starting meds..!

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tpup
New Member


Date Joined Jul 2009
Total Posts : 16
   Posted 8/6/2009 5:02 AM (GMT -6)   
I only had a conversation with our doc's nurse confirming positive test results. Started Ceftin a week ago (was allergic to Doxy) and I feel pretty bad - worse, almost - my only symptom before this was pretty bad fatigue, feeling run down, nausea and some light headedness. Now those symptoms feel worse since I started treatment. I feel like I have congenital heart disease or something, I am SO tired. I want my energy back!!
 
I do plan on seeking out a Lyme specialist in my area (Northern VA). Even though we supposedly "caught it early", I worry that the 21 day treatment prescribed won't be enough.
 
Was wondering if someone can help interpret what this all means?
 
Rocky Mtn Spotted Fever - Negative
IGG, M Western Blot - Bands that were positive or "Present" were IgM P41, IgM P23, and Lyme IgM WB Interp. is "POSITIVE".
 
Also says: Positive in 5 of the following: "Borrelia-specific bands: 18, 23, 28, 30, 39, 41, 45, 58, 66 and 93. Then "Positive in 2 of the following bands: 23, 39, 41
 
I am also deficient in Vitamin D (moderate).
 
So do I have a "certain" type of Lyme? Is being positive in "5 bands" pretty bad??
 
Would love any insight on the above. Thank you!

JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 8/6/2009 5:36 AM (GMT -6)   
You are positive for Lyme disease according to the CDC. You may be feeling worse due to a herxheimer reaction.... but keep a close eye on everything since you were allergic to doxy. Read the "newcomer" threads at the top of the posts for more information. And, if anything gets worse please contact your doctor.

Hope this helps.
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has.  - Margaret Meade
06/00- I begin to fall apart, 08/01-LD +, 10/01- Igenex and CDC LD positive, 10/02-LD +, 11/03-LD +, 10/07-Bartonella +, CD57=3, koseri IgA +, Morganella +, motgani +,Rocky Mountain Spotted Fever +, Typhus +, Klebsiella pneumonia +, Proteus miabilis +, Citrobacter i IgA +, Hafnia alvai IgA +, NKC4 +, Interleukin 4 (IL4) +, IL8, Immunobillin (IM01) +. 
Rx's 06/15/09: Wellbutrin 300, Paxil 60, Xanax 5, Acidophilus, Lyrica 600, Levaquin 500, Diflucan, Invanz IV, possibly Gammaglobulin, Flagyl, HBOT  
"How much more can I take?", songhttp://www.youtube.com/watch?v=5gHiR1xeOSs


ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 8/6/2009 6:31 AM (GMT -6)   

Hi tpup.  What dose of Ceftin are you taking?  I don't know if you saw my reply to your other post at http://www.healingwell.com/community/default.aspx?f=30&m=1552463 but three weeks of treatment is not long enough even if an infection is caught within two weeks of getting bitten.

Which lab did your Western Blot?  It is important to be tested by a Lyme lab such as IgeneX in Palo Alto, CA.  Labs such as Quest and LabCorp do not list two of the Lyme-specific bands that IgeneX does (bands 31 and 34).  Your test is positive.  It is very important to be tested for all the co-infections mentioned in the other post.  Many people who have Lyme are co-infected, and it may affect treatment choice and progress.

Below is the breakdown of the Western Blot bands:

9 cross-reactive for Borrellia
12 specific for Bb
18 unknown
20 cross-reactive for Borrellia
21 unknown
22 specific for Bb, probably really the 23/25 band
23-25 outer surface protein C (OspC), specific for Bb
28 unknown
30 unknown; probably an outer surface protein; common in European and
one California strain
31 outer surface protein A (OspA), specific for Bb
34 outer surface protein B (OspB); specific for Bb
35 specific for Bb
37 specific for Bb
38 cross-reactive for Bb
39 is a major protein of Bb flagellin; specific for Bb
41 flagellin protein of all spirochetes; this is usually the first to appear after a Bb infection and is specific for all Borrellia
45 cross-reactive for all Borellia 
50 cross-reactive for all Borrellia
55 cross-reactive for all Borrellia
57 cross-reactive for all Borrellia
58 unknown but may be a heat-shock Bb protein
60 cross reactive for all Borrellia
66 cross-reactive for all Borrelia, common in all bacteria
83 specific antigen for the Lyme bacterium, probably a cytoplasmic membrane
93 unknown, probably the same protein in band 83, just migrates differently in some patients

The IgM tests for a more recent infection and the IgG a longer standing one.  Band 41 is often the first to show, and bands 23 and 39 are Lyme specific bands.   

It is not unusual to feel worse before feeling better when getting treated for Lyme.  Be aware of the Jarisch-Herxheimer Reaction (herx).  Often when people who have Lyme take antibiotics, their symptoms get worse or they get new ones.  When the antibiotics kill the bacteria, toxins are released making them feel worse.  It can be scary when it happens, but it is a sign the antibiotics are working.  This is probably why you feel worse.   During treatment, it is important to document your symptoms daily.  One way to do this is to list the main symptoms you have with a numerical rating of their severity from 1-10.  Over time when you review this, you can see when your herxes occur and how you are responding to the meds.

I recommend getting an appointment with a Lyme doctor as soon as you can so you can get properly treated.  Many of them are booked, so you may want to make an appointment soon.  If the one you want to see is booked, ask to be notified of any cancellations so you may get in earlier.


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 8/6/2009 8:14 AM (GMT -6)   
tpup,

Look up herxheimer reaction. When you have Lyme Disease and get put on Antibiotics, your symptoms get worse because the bacteria are dying off and releasing toxins in your body. You will feel worse before you feel better. It's a good thing it was caught early. Also, keep an eye out for an allergic reaction, just like Jelaine said, since you were allergic to Doxy.

I'm curious....what actually happened when you took doxy?

Having 5 bands positive is great. It's not great that you have Lyme, but it's great that the test was reliable enough to pick it up. Most of us have Lyme and test negative, so you are lucky in that aspect.

Being low in Vitamin D usually comes with Lyme Disease. You may also want to get your B-12 levels checked too.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum

Post Edited (CajunGrl) : 8/6/2009 9:02:22 AM (GMT-6)


tpup
New Member


Date Joined Jul 2009
Total Posts : 16
   Posted 8/6/2009 8:53 AM (GMT -6)   

I am taking 500 mg of Ceftin, twice daily. I am also taking acidopholus (live, refrigerated) an hour after.

After I took the first Doxy, I got very itchy (face, ears, eyes). Itchy during the night - kept me up. By morning, felt awful - very itchy scalp and ears, felt foggy in the head, heavy chest and slightly tight throat. Symptoms went away upon taking 1 Benadryl. Doc said stop the Doxy and put me on Ceftin.


Post Edited (tpup) : 8/6/2009 8:57:09 AM (GMT-6)


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 8/6/2009 9:05 AM (GMT -6)   
tpup,

Okay, I thought that maybe you were herxing and didn't know what it was but that does sound like an allergic reaction. Yikes!

As for acidophilus, try taking it 2 hours after taking your ceftin dose. This will help to make sure some good bacteria are being put back in your body.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 8/6/2009 12:10 PM (GMT -6)   
tpup, if i am reading you WB right. you have the same as mine. it show IgM 23 & 41 positive. mine was done at LabCorp. and then turned it in to the CDC and health dept in my area. so do not be surprised if they give you a call at some point, like i was.LOL

i wish you all the best in finding a LLMD. to better insure that others can give you the best info. you may want to change your setting to show your email addy.
   RD
 
still looking for answers.
 
Remember that advice is free, its your choice what you do with it.  :)


ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 8/6/2009 6:38 PM (GMT -6)   

tpup, according to Dr. Burrascano's treatment guidlines (many Lyme doctors follow them) the recommended dose of Ceftin is 2000 mg daily.  It is important to get the proper treatment.

Is your appointment with a Lyme doctor soon?  If you need a recommendation, feel free to email me.

 
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