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Old 09-22-2007, 06:15 PM   #1
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JP76 HB User
Treatment for Chronic Lyme?

Hi - I have had many symptoms for years and was originally diagnosed with fibromyalgia. After a recent Western Blot showed positive reactions on bands 18, 23, 66 (igg) and 39 (igm), I am now being diagnosed with Lyme. My blood is being sent to Igenex and then I will begin treatment with a specialist.

I am wondering what my treatment will consist of and how I will likely feel long-term.

I am currently a student pursuing an education in Nursing and I am wondering if this is unrealistic do to my diagnosis.

Thank you for your time and help!

 
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Old 09-22-2007, 08:09 PM   #2
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bigstan HB User
Re: Treatment for Chronic Lyme?

Hello JP76, Welcome to the board. You will get some relief chatting with others in the same boat as yourself. To answer your post Lyme effects every individual in different ways. Depending on how long the person has had Lyme, or if the Lyme has penetrated the neurological/brain barrier. The neurological symptoms usually happen in advanced cases or chronic Lyme like myself. I was recently diagnosed this past June. I have been sick from what I can remember since January 06. I currently have a picc line in my arm so I'm able to do home infusion with antibiotics. This is because the Lyme is causing me neurological problems and oral antibiotics won't help fight the bacteria. In your case I noticed that you had a Western Blot (IgM) test. I am curious who did the testing? You can't go wrong with IgeneX they are one of the best labs testing for Lyme. On the Western Blot test, the tests are done in two separate studies. These are the Western Blot (IgM), and Western Blot (IgG). The difference being is that the (IgM) as in your case, is a test for short term infections. Usually 6 weeks or under the body starts to produce antibodies. The (IgG) tests for long standing infections. IgeneX will do these tests on the #6050 panel plus other testing. Just curious if you have the (IgG) results or if they were ever done. I guess one way to look at it is that you are positive in the short term infection. Treatment may help you right away to eradicate this pest. More then likely on oral antibiotics. If you have a long standing positive test, your doctor might consider the IV antibiotics.

As far as your schooling and long term diagnosis. Again it depends on how far the disease has progressed. In my case I have been unable to work this past year. I have brain cognitive problems, dizziness, ringing in my hearing, and some skipped heart beats. There are times it really feels like I am in a different reality. People call it brain fog. I work in the legal profession and this disease has made it impossible to do my job correctly. So you may have difficulty when you are studying, or staying focused in your activities.
One thing to look out for is the Jarisch- Herxheimer" reaction. This is when the antibiotics kill off the bacteria. The dying bacteria release toxins into your bloodstream. The human body can't get rid of these toxins fast enough which causes an increase in your symptoms. You should do research on the web to get more info.

Well good luck in your future. If you post your results from IgeneX, somone will help you on the board in reading them.

 
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Old 09-22-2007, 08:59 PM   #3
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lymesgal HB User
Re: Treatment for Chronic Lyme?

Wow, Big Stan, thanks for all the information! I really had no idea what IgM and IgG meant, I've never heard anyone explain it so well..
I'm sorry to hear you have chronic/neurological lyme, I know how hard life can be. I have it myself. I suspect I've had it for 7 yrs. or more and have been treated with abx for 2 yrs. It's not working for me. I can barely function with all the brain fog. It's difficult sometimes having a normal conversation with someone because I will forget what I'm talking about and it is so embarassing. I will stop mid-sentence and have no idea what I am saying, I have such a fog come over me. People have no idea that it's lyme so they just think I'm 'dingy'. Yes and I am a blonde! That doesn't help, ha.

I have a question for you...if abx can't get into the neurological system to kill the bacteria, then how does it ever cross that 'barrier'? Does the abx eventually break thru? Does a picc line break thru that barrier? It just doesn't make sense to me...if it's neurological it seems everyone who has it should be on a picc line so it can break that barrier?..My LLMD has never mentioned it.

I am going to see my LLMD in Oct. I hope he changes up my protocol because the Biaxin and Plaqueni that I have been taking doesn't seem to be doing any good. Have you ever taken the biaxin and plaq. combo? I just think my body/lyme is too use to it, I've been on this protocol for about 8 months.

How are you feeling since you've been on the picc line? I hope you are feeling better. How long will you be on a picc line?

Sorry for all the questions! I hope you are having a good weekend!

 
Old 09-22-2007, 10:29 PM   #4
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bigstan HB User
Re: Treatment for Chronic Lyme?

Hi Lymesgal, Let me explain it further. There are antibiotics that can't cross the brain barrier to kill Lyme. Most of the oral antibiotics. Although I hear that massive doses of Amoxicillin will do it. My LLMD said that's about the only oral that will. Once Lyme gets into the neurological system, you usually need to be put on an antibiotic that crosses the brain barrier. Most are antibiotics in the IV form. Here is a list of antibiotics that cross the BBB orals and IV. Not all of these are used to treat Lyme:

OFLOXACIN (racemic mixture) a fluoroquinolone

RIFAMPIN lipophilic ----------------- (all rifamycins)

METRONIDAZOLE (Flagyl)- lipophilic [used against Bb cysts]

COTRIMOXAZOLE (Bactrim) a sulfa drug -- (all
Sulfamides)


SPARFLOXACIN (Zagam) a fluoroquinolone

Ketek —from what I’ve read, crosses the BBB only weakly. Macrolide family, 4th generation,

LEVOFLOXACIN (L isomer of Ofloxacin) a fluoroquinolone

DOXYCYCLINE (vibramycin) a tetracycline type-lipophilic.

MINOCYCLINE-a Tetracycline

GREPAFLOXACIN-

AMOXICILLIN- a penicillin type, passes BBB only weakly

Bicillin — a penicillin, passes bbb only weakly if at all; there’s some disagreement among pharacologists about this.

BIAXIN-a macrolide-passes BBB weakly

ZITHROMAX- a macrlide-passes BBB weakly

ERYTHROMYCIN a macrolide---passes BBB, but not as well as other antibiotics.

Tinidazole (Tindamax)— a 2005 drug ref says: Tinidazole is distributed into virtually all tissues and body fluids and also crosses the blood-brain barrier. [used against Bb cysts]

Quinolones

Generation III cephalosporins

I am currently on IV Rocephin (Ceftriaxone) which is a cephalosporin, 4 grams daily. I have not been on any other antibiotic to fight Lyme yet. Although my LLMD already told me he is going to try different meds to confuse the bacteria. He is going to put me on a cyst buster like Flagyl in addition to the Rocephin.

It is very possible there may be more cures or remissions when a "cyst buster" is added to rocephin. It would make sense. This has just recently become common treatment. So will see. I'm knew to this but have learned a lot. I am only 5 weeks into my picc line. I have know idea at this time how long I will have to have it. I had a very strong herx reaction in the past week which actually made me head to the ER once again.

Please ask your doctor to consider putting you on a picc and IV antibiotics. If you have been sick for seven years that's longer then myself and I would think that IV antibiotics would be the way to go. I'm not a doctor so there may be a reason your doctor hasn't done this. You said that you are seeing an LLMD which is good. They are more aggressive in treatment then regular MD's.

Let me know how it goes.

 
Old 09-23-2007, 05:12 AM   #5
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JP76 HB User
Re: Treatment for Chronic Lyme?

Bigstan, thank you for taking so much time to help me. It seems I still have a lot to learn, especially about the treatment. My symptoms began 12 years ago after a mysterious ringed sore on my ankle. Following this I came down with flu like symptoms and was told by the hospital ER I had a virus. I have not been the same since and my symptoms have changed and worsened over the years.

My doctor said chronic lyme is even more difficult, so I suppose with a lab test from ******* showing 4 total positive bands is good. IGG was positive for bands 18, 23 and 66. IGM was positive on band 39.

Tomorrow I send my blood off to Igenex so I can eventually begin treatment.

My symptoms range from cognitive, neuro and physical. I just have a fear of never being well. I have been pursuing an education in nursing in spite of this fear, hoping one day things will turn around. Maybe I need to give up my dream to stay focused on my own health, I don't know....

I will keep you posted and THANK YOU, again!!

Last edited by JP76; 09-23-2007 at 05:21 AM.

 
Old 09-24-2007, 01:25 AM   #6
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bigstan HB User
Re: Treatment for Chronic Lyme?

Hi again JP76, Here is a breakdown of the Western Blot bands. Posted on this site from a wonderfull lady by the name of Ticker. Find your bands. From what I see you have a case of Lyme disease. Remember that no Lyme test is accurate there are always false negatives and false positives. Lyme is a very smart bacteria that likes to play hide and seek in your system. If its hiding in your organs or elsewhere it might not be active or traceable in your bloodstream. I hear that sometimes after a course of antibiotics, testing is more accurate. But again nothing is concrete.


Below is the breakdown of the Western Blot. The IgM tests for a more recent infection and the IgG a longer standing one.

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

Band 41 is often the first to show, and his are positive. Bands 31, 34, and 39are Lyme specific bands and his are either postive of IND

 
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amoxicillin, bactrim, biaxin, doxycycline, erythromycin, flagyl, metronidazole, minocycline, ofloxacin, penicillin, tetracycline, zithromax



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