Help with Lyme Treatment Decision

[Todd36]

Hello everyone,

Well, I FINALLY got my Western Blot back and the results are mixed.  According to my IgM, I had three indeterminate marks for three double starred bands, and according to my IgG, I am positive for Lyme using IGeneX standards b/c I have two double starred bands that are positive and one indeterminate double starred band (I presume you are all familiar with the jargon, right?).  On the IgM, marker 41kDa has three positive signs next to it, suggesting I have definitely been exposed to a spirochete, which is the class in which Borrelia burgdorferi falls under.  To that end, according to IGeneX standards I am positive for Lyme on the IgG but indeterminate for the IgM, and I am negative for both if using CDC standards.  My CD57 was 42 cells/micro liters, which, depending on whose CD57 range you use, is either below the average range or on the lower end of average.  My doctor suggested I start a three month course of antibiotics.  Given my test results would you have another Western Blot test performed, or go with the antibiotics?  I’m a little apprehensive on taking antibiotics for such a long period of time.

What antibiotics are you currently being treated with?  My doctor wants to use some aggressive kind that I'd have to get injected 2-3 times per week for three months.  Does that sound familiar to anyone?  I've read doxycycline is generally the antibiotic of choice.  In your opinion, how effective is doxycycline?

Thanks in advance for your help!

Rgds,
Todd

[Todd36]

thanks again for your comments.  i appreciate everyone's help.  i'll keep you posted on my progress.

thx,
todd

[jason80]

I'm in the same dilemma as you. By Igenex, I tested CDC positive for IGM and CDC negative for IGG. By CDC standards (key note), the assumption of Lyme is probably false positive unless the IGG is positive, so I retested and got fairly similar results a couple of months later (i.e., still negative overall for Lyme by CDC criteria). Then I tested by a different lab and got CDC negative for both IGM and IGG several months later.  My ID was quick to point out that 50% of the population tests positively for 41 band because it isn't very specific unfortunately, so that is just one more inaccuracy of this test.

BTW, I also tested 42 for CD57, so collectively with my IGM positive by Igenex, the LLMD thinks I have Lyme.  

I can appreciate you want to do the retest. In my case, it didnt' help clarify much because I realized that the testing is not very accurate to begin with.  I sort of wish I had retested my CD57 because I'm very curious how consistent that is. I've had plenty of other blood work that got a scary result of a signficant health problem only to be repeated to be normal.

I tested positively/high for certain viruses that tend to cause CFIDS so you might consider this in parallel with anything else you're doing.

Good luck.

[JackieCalifornia]

The antimalarial is probably for the Babesia.  I took atovaquone (brand name:  Mepron) for that, and it worked all right.  Babesia is a tricky one and hard to kill, apparently.  After I was done with a regular course of atovaquone, I still tested positive for Babesia, but it seems gone now after my third round of abx.

I read that some people have nausea with it, but I never did, and neither did a friend of mine.  It's bright yellow and kind of slimy, but I found the faster I got it down the hatch, the better.  I didn't mind the taste or texture at all.

[Stephen898]

A few weeks ago it really had me wondering what was going on. A few symptoms that I thought were gone came back. Doxy seemed to have crossed BBB better than other abx's. My ringing was pretty intense. Neck got really stiff and my head was rockin. Like you said it has taken about a month. I guess were getting better.

[patsy10]

My experience is just like yours with doxy.  Took me a month to get over the worsening of symtoms.

[Stephen898]

My Igenex test was CDC positive. I have never doubted my diagnosis. I had an infected deer tick bite and developed classic symptoms of Lyme.

I started out with Ceftin for 5mos which was effective. My LLMD just switched me to Doxy in February. About three days after starting it my symptoms worsened. Its four weeks later and I am still climbing out of it. In my opinion it is the most aggressive Abx that I have used. It is rough on your stomach i have to eat plenty of food. It does make you nauseated. I found that out last week, i had to step out on my front porch and let it go. Didn't eat enough food. Watch the sun. Your skin can get burnt in minutes learned that the hard way to.

[wonko]

My doctor thinks that my worst residual symptoms are from Babesia, and that if it has survived the 3 month of oral antibiotics, then antimalarials may be the next thing to try.

I've also heard the theories that patsy10 describes.

I am concerned about the side effects, but I want to do everything I can to rid myself of these infections and symptoms.

[patsy10]

The lyme doctor I saw would not prescribe doxy from April until the fall due to the sunburn issue.

My friend's doctor put her on the anti-malarial drug plaquenil.  It's supposed to help with the cystic form of lyme by helping the other antibiotics to get into the cell wall or something to that effect.

[Todd36]

thank you all very much for your feedback.  

patsy10,
I believe the injected antibiotic my dr is proposing to use is called bicillin and it's supposed to be pretty hardcore.  Getting injections 2 to 3 times per week is really high maintenance, and I'm not sure how well it will work into my schedule.  I'm not allowed to inject myself and my wife won't do it, so that means I'd have to visit my lyme dr two to three times per week, and she's located 30 minutes away!!  I'm going to see if i can try an oral antibiotic first.  The only problem I have with doxy is the sun exposure limitations, especially since summer is around the corner.  I guess i could take it and just stay out the direct sunlight for three months.

Wonko,
Great suggestion to locate other Lyme patients my dr has treated.  I doubt she'll disclose that sort of information, so it might be difficult, but it doesn't hurt to ask.  Why is your doctor putting you on antimalarial meds?  Those are nasty drugs and I would avoid them if possible.  you will get really sick from them and your ears will likely ring like crazy!!  I'm only familiar with the antimalarial med called fanzidar, which works great for malaria but it's strong stuff.

Thanks again everyone!

Best,
Todd

[wonko]

While my CD57 was normal (~100), my Igenex results were similar:

IgG 39 + 41 +++, IgM 41 +.  Everything else was -.  So my results are also CDC negative, but IgG positive by Igenex standards.  I also have a positive test for Batonella and a clinically-based Babesia diagnosis.

I don't have any experience with injecting antibiotics.

I pulse (take different pills different days) minocycline, azithromycin, and bactrim.  During a recent phone consult, my LLMD alluded to adding an antimalerial next month.  The range of antibiotics is to target both Lyme and the co-infections, as there is not a single antibiotic that will work on them all.  The pulsing is supposedly to try and "confuse" the infections.  Not all doctors do it or agree on its usefulness.  

I'm not sure I can say that any one antibiotic worked the best for me.  I added them one at a time to my regimen, and had different Herxes from each.  I feel as though I needed the combination to get as far as I have, and am eager to take the next step in April.  

With any treatment for any illness, you and your doctor need to weigh the risks against the potential benefits.  I am very pleased so far (3 months) into my antibiotic treatment.  I haven't had adverse reactions to the medications, just Herx reactions (which I think are unavoidable and part of healing).

Have you met or do you know any Lyme patients who have been treated by your doctor?  It put my mind at ease somewhat to find others seeing the same doctor who were very pleased with their treatment.  However, that may not be as easy for you since you are not in an endemic area.  

[patsy10]

It sounds positive to me.  Your CD 57 is also quite low.  I'm just wondering why you can't start with orals.  Your doctor should be able to give you a reason for the injections. The injections are stronger and work faster though.  If lyme is indeed present you might have a really bad herx reaction.  Is the injection bicillin?

Three months is not a long time for treatment.

Regarding doxy, for me this drug worked better than any of them.  Supposedly it is good for an early case of lyme.  I have read that for later lyme it needs to be in higher doses.  Personally, I don't know how anyone's stomach can handle bigger doses.

[Hope75]

I am by no means an expert, having just received news of my positive ELISA.  However, I have poured over the internet and question doctor friends of mine and also questioning a very concretely diagnosed Lyme friend.  My GP put me on oral doxy for 10 days.  I think that is the minimum treatment you could possibly do and from what I've read, is really weak and to be used for the newly infected.  I think he is just throwing me a bandaid, so I will shut up, because he didn't seem thrilled to have to address the positive ELISA.  I've had neuro symptoms for over 2 yrs, so I think i should have more aggressive antibiotic therapy, if my Western Blot comes back similar to yours.  I am all for it.  Kill those bugs.  The side effects of long term antibiotics are mostly/usually tolerable and your treatment could be adjusted according to how well you do - I would think.  I'm not a doc, but that's how I would look at it and I just want treatment to lessen my chronic pain and fatigue, so I am somewhat desperate.  I hope you can come to a comfortable decision for you and keep the forum posted on your progress.  That's my two cents as a novice at Lyme:)

[ginak]

It sounds like we have the same test results. However, I have more IND bands than I do +, but on both the IGG and the IGM, I have 2 + next to band 41. Even though I have both NEGATIVE results on the IGG and IGM test by CDC and Igenix standards, My LLMD considers any IND band to be reactive and therefore discussed treatment plans with me today. Before I start on the doxy, she put me on a series of herbal supplements because she told me that it could possibly decrease the herxing affects. She told me that with a CD57 of 44, I was definitely dealing with chronic lyme despite the test results. To be honest, I don't know what to think. I have a ton of neuro symptoms that have been going on for 8 months. I am going to give her treatment plan a try because at this point, I have nothing to lose.