How do you all feel about Western Blots?

New Topic Post Reply Printable Version
29 posts in this thread.
Viewing Page :
 1  2 
[ << Previous Thread | Next Thread >> ]

Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 6/3/2009 10:26 AM (GMT -7)   
Do you agree that any positive/IND Lyme specific bands are truly an indicator that you have the disease? Do they warrant treatment?
 
I was on Doxy for one month w/o a herx. Then I gave up. I didn't handle changing my whole lifestyle for something that 'might' be wrong with me.
 
How does everyone feel about test results from Igenex?
 
On IGG, I have 39 IND 41 +++ and 58 +
On IGM, 30 + 39 IND 41 IND
 
I also have white matter lesions in my brain. (Almost all of my symtoms are neurological)
 

JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 6/3/2009 11:52 AM (GMT -7)   
Jendays247 said...
I didn't handle changing my whole lifestyle for something that 'might' be wrong with me.
I don't understand this statement.  My life style came to a grinding halt in October 2002.  I had "relapsed" and tested positive for Lyme disease AGAIN.  I couldn't climb the stairs.  I just stood there and screamed and cried until my husband "walked" me up the stairs.  I told him then, "I can't go through this again."  And I have been "going through it" ever since.

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- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3, possibly just tested positive for koseri IgA, Morganella motgani,Rocky Mountain Spotted Fever (RMSF - yay! another acronym), Typhus Fever, Klebsiella pneumonia, Proteus miabilis, Citrobacter i IgA, Hafnia alvai IgA, NKC4, Interleukin 4 (IL4), IL8, Immunobillin (IM01). 
Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Acidophilus, Lyrica 600mg
"How much more can I take?", songhttp://www.youtube.com/watch?v=5gHiR1xeOSs


Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 6/3/2009 11:54 AM (GMT -7)   
When I started treatment, I was pretty my stuck in my house. I wasn't nearly as sick then as I am now, and I felt like treatment was putting too many restrictions on me - more restrictions than my disease. I didn't want that, so I gave up. I didn't see results so I just said forget it - I'll have fun while I still can.
http://www.myspace.com/399827188


ktp812
Veteran Member


Date Joined Jul 2007
Total Posts : 715
   Posted 6/3/2009 12:21 PM (GMT -7)   
Your entire WB is almost identical to mine IGG (41+++, 39 IND, 34 IND) IGM ( 23-25 IND, 39 IND 41 IND) and I still am not sure I have Lyme...I did have a positive Bartonella titer though.
Doing the abx have not put any restrictions of my lifestyle. When I had the Picc it did but after being sick for 3 years (at the time) I was willing to do anything.
 
My sister had only a positive 41 and a well known LLMD in Mass told her no way was that an indication of Lyme. I think we all have to make our own choice of whether to treat or not especially when our tests are not totally positive or negative...I have been on abx for over two years and don't have much improvement. Fatigue is still my worse problem...not just tiredness but total body exhaustion very debilitating.

RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 6/3/2009 12:44 PM (GMT -7)   
my WB showed only 41 positive IgG but IgM 41 & 23. 3 Dr. all say i am positive for lyme, 2 stated i show positive for new exposer the nuero and the ID.but with them saying i have this they havent seen fit to treat me yet.btw i have not been bit by a tick in at lest 3 yrs now. so this is something to think about. this disease has many faces to it and do anything it wants. just my 2 cents
   RD
                                                                                                                 
 
still looking for answers
 


Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 6/3/2009 1:53 PM (GMT -7)   
KTP~

You haven't seen any improvement at all? What meds are you on? What symptoms do you have?

Do you have an LLMD that says you have Lyme? I can't imagine only contracting Bartonella and not Lyme.
http://www.myspace.com/399827188


ktp812
Veteran Member


Date Joined Jul 2007
Total Posts : 715
   Posted 6/3/2009 2:22 PM (GMT -7)   
Yes, my LLMD says I have Lyme and Bart. I had dramatic improvement for 4 months last year on the combo of Rocephin, Rifampin, Malarone and Plaquenil but when I had to come off IV due to gallbladder problems I totally have relapsed. It took almost a year but I am back to square one. I have been on bicillin injections and orals all this time but nothing seems to be working at all now. I have been on at least 8 or 9 different abx in total.
 
I am not convinced I have Lyme only because nothing has worked before or after the Rocephin. I was recently on Rocephin for another 3 months and this time it did NOTHING. I have no clue with whatever is wrong with me. I have been sick for almost 5 years with major fatigue my worse..I became sick overnight and haven't been the same since.
 
I can't understand why the doctors are clueless as to what is wrong here. I have been to many and they all have a different answer. I even sent my records to Mayo and they said that some cases are never solved and that Lyme is way overdiagnosed. I don't think I will be going out there.
 
I still am not sure what I have...maybe the testing I just had done will show something.

Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 6/3/2009 3:29 PM (GMT -7)   
But you saw such improvement on the first combo, wouldn't that give you some hope that what you have IS Lyme/Bart and maybe if you didn't have the GB problems, it would have kept getting better?
http://www.myspace.com/399827188


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 6/3/2009 3:39 PM (GMT -7)   
Ktp,

I also agree that if you did show some improvement, that you do have Lyme Disease. If not, you wouldn't have gotten better at all. Maybe you need to get aggressive again with your treatment.
2003 symptoms started
2007 Diagnosed with Lyme. Didn't start treatment.
2008 symptoms came back with a vengence.
2009 Diagnosed with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Biaxin 250mg to start,Mepron,Ultram,Thyro Complex 60mg,Probiotics and supplements


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 6/3/2009 3:42 PM (GMT -7)   
Jennifer,

You can have Bartonella without having Lyme Disease. You can get it from a cat scratch. In fact, I remember being scratched real bad by a cat on my shoulder and feeling real achy and flu-like after. I had forgot all about that incident. I used to rescue stray cats and I think one of them was infected.
2003 symptoms started
2007 Diagnosed with Lyme. Didn't start treatment.
2008 symptoms came back with a vengence.
2009 Diagnosed with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Biaxin 250mg to start,Mepron,Ultram,Thyro Complex 60mg,Probiotics and supplements

Post Edited (CajunGrl) : 6/3/2009 5:34:45 PM (GMT-6)


ktp812
Veteran Member


Date Joined Jul 2007
Total Posts : 715
   Posted 6/3/2009 4:12 PM (GMT -7)   
I did get better on that combo but then when the doctor tried it again I had no improvement at all...and it was 8 months later. I do wish I could have stayed on but had to have my gall bladder out so the doc decided to pull my line.
I am thinking maybe I only have Bart since I live in the Northeast and I heard the ticks around here have more Bart than Lyme.
I guess I will know once I start treatment again or maybe not...who knows with this disease

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 6/3/2009 4:36 PM (GMT -7)   
Ktp,

I wish you luck with your next treatment. I hope it works for you this time around.
2003 symptoms started
2007 Diagnosed with Lyme. Didn't start treatment.
2008 symptoms came back with a vengence.
2009 Diagnosed with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Biaxin 250mg to start,Mepron,Ultram,Thyro Complex 60mg,Probiotics and supplements


ktp812
Veteran Member


Date Joined Jul 2007
Total Posts : 715
   Posted 6/3/2009 6:22 PM (GMT -7)   
Thanks...I wish you luck with your treatment also

Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 6/3/2009 7:24 PM (GMT -7)   
Yes I just realized that Bart is the same as Cat Scratch Disease. Sorry.
http://www.myspace.com/399827188


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 6/3/2009 7:28 PM (GMT -7)   
That's okay Jennifer. How are you feeling today?
2003 symptoms started
2007 Diagnosed with Lyme. Didn't start treatment.
2008 symptoms came back with a vengence.
2009 Diagnosed with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Biaxin 250mg to start,Mepron,Ultram,Thyro Complex 60mg,Probiotics and supplements


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 6/3/2009 7:35 PM (GMT -7)   
Most LLMD's look more at symptoms and history than the WB, because of the lousy accuracy of the tests. However, even the presence of 1 Lyme-specific band on IgG OR IgM is significant and should at least be looked at by an LLMD or LLND in my opinion. Band 41 is not Lyme-specific, but is often the first and only band that people with Lyme show positive because their immune system is so beaten back by this disease.

The "bottom line" is to treat the patient, not the test results, and see what happens. If medications don't work, try herbal treatments and/or homeopathy and/or chinese medicine and/or acupuncture etc.... in other words, don't give up looking for something that improves your health.

This is just my very humble opinion...
-Razzle
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, Pancytopenia, chronic malabsorption/malnutrition, etc.; G-Tube; Currently TPN-dependent.
Meds:  Zofran, Pulmicort, Heparin (to flush PICC line), Claritin, Colloidal Silver (used topically), IV Milk Thistle, probiotics.


+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 6/3/2009 8:29 PM (GMT -7)   
In several pieces I've read about the WB (Dr. Burr might have been one?), I've read that there are people who test negative sero, but who, after a certain amount of abx/treatment, then begin showing positive. The reason being that a lot of peoples' immune systems are so shot that no antibodies show on a sero test. But then after a certain amount of time on Abx, the immune system has been kicked back into action and this is the time more antibodies show up on the test.

This seems to make sense. So maybe LLMDs should do another WB after a month or so of abx and see if they get more positives? I understand that the diagnosis should be mostly clinical, and I agree. Except perhaps in cases where the person may facing other grave diagnoses if Lyme is ruled out.

Question regarding long term abx, and/or returning to abx at a later date, as someone posted above. Isn't there the risk and/or liklihood or chance of the bacteria building up an immunity to the abx? Isn't that what happens w/ too much penicillin?
Lyme in NC in 1971? Suspect TBI: Fully engorged tick followed by high fever and tonsillitis. Follwed by , lumps on neck,  chronic tonsillits w/ constant low grade to recurring high (104) fevers, severe unexplained neck stiffness and acute neck pain.   Followed by tonsillectomy, urinary tract infections, miscarriage, appendicitis while pregant, chronic severe back pain. Followed by depression, mild anxiety, mitral valve prolapse, and hypglycemia.  What was this??
 
Bit again couple of times, lyme suspect bite Mother's Day 2007. Bite, symptoms, lyme specific antibodies on the most lyme specific band of all = 39 IgG.  Still awaiting appt w/ LLMD.


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 6/3/2009 8:36 PM (GMT -7)   
Yes, there is a chance of antibiotic resistance, especially if someone starts and stops the same abx repeatedly. But most of the ILADS physicians haven't seen enough resistance to cease recommending long-term abx treatment.

In my opinion, in order for Lyme treatment to be successful, I think it is necessary to not only kill the bugs with some kind of antibiotic medication and/or herbs (and/or RIFE, UV, ozone, hydrogen peroxide, etc.), but also to build up the body's immune system so it can join in the battle.
-Razzle
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, Pancytopenia, chronic malabsorption/malnutrition, etc.; G-Tube; Currently TPN-dependent.
Meds:  Zofran, Pulmicort, Heparin (to flush PICC line), Claritin, Colloidal Silver (used topically), IV Milk Thistle, probiotics.


+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 6/3/2009 8:40 PM (GMT -7)   
Razzle, I am understanding you to say that there is less chance of abx resistence & immunity w/ continuous abx, as opposed to on and off treatment w/ the same abx?
Lyme in NC in 1971? Suspect TBI: Fully engorged tick followed by high fever and tonsillitis. Follwed by , lumps on neck,  chronic tonsillits w/ constant low grade to recurring high (104) fevers, severe unexplained neck stiffness and acute neck pain.   Followed by tonsillectomy, urinary tract infections, miscarriage, appendicitis while pregant, chronic severe back pain. Followed by depression, mild anxiety, mitral valve prolapse, and hypglycemia.  What was this??
 
Bit again couple of times, lyme suspect bite Mother's Day 2007. Bite, symptoms, lyme specific antibodies on the most lyme specific band of all = 39 IgG.  Still awaiting appt w/ LLMD.


Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 6/3/2009 8:48 PM (GMT -7)   
My worry about the immune system is this:

I am on Low Dose Naltrexone - it is an immune system modulator that I started taking when I was first being checked out for MS. Basically, if your immune system is over or underactive, it puts it into place, AND it suppsedly stimulated your t cells by 300%. My lifelong allergy to cats and dogs disappeared shortly after starting LDN, and I RARELY get sick (cold/flu/whatever). Still...I have all this neuro stuff...which is yet another thing to make me think I don't have Lyme. I must have a kick ass immune system from taking the LDN because I can't tell you the last time I even had a cough or sore throat or runny nose.

Do youguys get sick easily? Do you think it's possible to have Lyme and still steer clear of the common cold simply with vitamins and supplements? What is my deal?!
http://www.myspace.com/399827188


+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 6/3/2009 8:57 PM (GMT -7)   
Yeah, Jendays, I have steered clear of the common cold for probably 15-20 yrs w/ vites. I generally take 1000 mg of C, 3X day, and garlic  gel capsules twice per day (along w/ other supplements)

then, at the first INKLING of a cold coming on, I begin megadosing the C (1000 mg every hour or 2), along w/ getting to bed early. Works every time for me. But every person's body is different. What has been working for me, might not work for everyone else. But there is sure no harm in trying this!


Lyme in NC in 1971? Suspect TBI: Fully engorged tick followed by high fever and tonsillitis. Follwed by , lumps on neck,  chronic tonsillits w/ constant low grade to recurring high (104) fevers, severe unexplained neck stiffness and acute neck pain.   Followed by tonsillectomy, urinary tract infections, miscarriage, appendicitis while pregant, chronic severe back pain. Followed by depression, mild anxiety, mitral valve prolapse, and hypglycemia.  What was this??
 
Bit again couple of times, lyme suspect bite Mother's Day 2007. Bite, symptoms, lyme specific antibodies on the most lyme specific band of all = 39 IgG.  Still awaiting appt w/ LLMD.


ktp812
Veteran Member


Date Joined Jul 2007
Total Posts : 715
   Posted 6/4/2009 4:50 AM (GMT -7)   
I am suppose to start LDN in a few weeks and heard it causes insomnia..I already have trouble sleeping. I know some people take it in the morning to avoid this problem. I am going to do some more reading on it. I have adrenal insufficiency and hypothyroid due to infection so I am hoping this will help. I never have colds, flu etc..maybe been sick once in the past 5 years with a cold.
 
I have had 3 WB done and each time I had less bands show. In fact the last one I had in October 2008 only showed band 41 IND on the IGG and IGM and I had been on abx for almost 2 years at that time.  That was  the test that convinced me that particular band doesn't mean much at least in my opinion for me. So it will be interesting to see what the Lyme Dot urine test shows.
 
As for the abx I have never been on the mino/rifampin combination. If that one doesn't do anything then he wants to try zithro/rifampin which is another combo I have never taken. Even though I have been on many abx there are many different ones I haven't had at the same time. I would hope my LLMD knows best!

Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 6/4/2009 9:52 AM (GMT -7)   
KTP-

I think I had trouble sleeping the first night I was on LDN and I put myself on it by ordering it online before I found an actual doctor to prescribe it...and I started myself at only 1mg. I slowly worked up to the regular dosage of 4.5mg, and that's what I've been taking for about 3 years. I found a doctor to prescribe it to me after being on it for about 6 months on my own. I have never had a problem sleeping, and I take it anywhere from 12-2AM (whenever I'm about to fall asleep).

I wouldn't suggest taking LDN in the morning. Are you educated about how it works? It works with the circadian rhythm of your body. Your body naturally produces endorphins between 2 and 4 AM, and when you take the LDN before bed, it blocks this production, thus increasing it the next day through compensation (that's why people report feelings of general well being, decreased depression, etc). I think LDN has stopped working for me. A few people suggested taking it for 3 weeks and stopping for 1 week so this didn't happen, but I was too afraid I'd have an exacerbation, so I've never been without it for one day.

It did get rid of most of my allergies, and I do believe it has helped me...I'm just not sure how much it's helping now.

I definitely have faith you'll see improvements with it!
http://www.myspace.com/399827188


ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 6/4/2009 10:07 AM (GMT -7)   

Hi Jendays247.  One month of treatment is not even long enough for a new infection.  It can take time to recover from Lyme.

Many Lyme doctors use IgeneX for testing.  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 (sometimes people with Lyme who have this band positive also have the co-infection Ehrlichiosis)
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 shows a more recent infection and the IgG shows a longer standing one.  Band 41 is often the first to show.  Bands 31 and 39 are Lyme specific bands.  I think your results are significant.  Since they were done so long ago, they likely would be different now.

Some people with Lyme have MS-type brain lesions.  I think it would be a good ideat to be evaluated for the co-infections and start back on treatment.


ktp812
Veteran Member


Date Joined Jul 2007
Total Posts : 715
   Posted 6/4/2009 10:24 AM (GMT -7)   
I will take the LDN at night. My husband is a pharmacist and told me I should take it when I go to bed like the doctor told me to do.
I don't start it for another couple weeks. Doctor wants me to start the Rifampin and Mino a week apart so I don't think it will be until the end of June..
I am starting off on a  really low dose since sleeping is one of my main problems. My doctor did explain to me how it works and I went to the LDN website and read up on it.
I will keep you posted on how I do!
New Topic Post Reply Printable Version
29 posts in this thread.
Viewing Page :
 1  2 
Forum Information
Currently it is Friday, November 24, 2017 6:29 AM (GMT -7)
There are a total of 2,897,389 posts in 318,010 threads.
View Active Threads


Who's Online
This forum has 157580 registered members. Please welcome our newest member, Beth Louise.
244 Guest(s), 3 Registered Member(s) are currently online.  Details
TotesMagotes, straydog, lapilot


About Us | Advertise | Donate
Newsletter | Privacy Policy & Disclaimer
Follow HealingWell.com on Facebook Follow HealingWell.com on Twitter Follow HealingWell.com on Pinterest
©1996-2017 HealingWell.com LLC  All Rights Reserved.