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Sequence of events...sound typical?

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Posted 8/14/2009 1:12 AM (GMT 0)
Okay, so as my signature states...I started treatment in June. I did a Flagyl pulse immediately along with the Biaxin. No change. One month later, on my second Flagyl pulse, I noticed great improvement about three days after finishing the Flagyl. Some of the improvements lasted almost one month; others subsided slowly over the following two weeks. I had to stop Biaxin due to heart problems and could not jump right on anything else due to stomach problems.

Just before completely stopping the Biaxin, I slowed down a bit due to the stomach issues. I was taking one a day instead of two on occasion...and there was one or two days where I didn't take anything because the GI problems were so bad that I thought I would just throw up the medications anyway. During this time, according to my treatment/symptom log, I notice that my symptoms began to vary in intensity, some balance issues surfaced again which had been gone for almost two weeks...some other strange neuro stuff came up and would go away randomly. I finally completely ended the Biaxin and the balance stuff became worse within two days...I started 3000mg of Amoxil which I only took three doses of because of the severe stomach pain it gave me. So, I decided that just because I couldn't tolerate the Amoxil, I would still continue the Flagyl pulse. The usual things came up...slurred speech, muscle 'weirdness', etc...but by day 6 of the pulse, I felt exactly how I did before I started treatment in June. My balance is now TERRIBLE once again...muscle weakness has returned...the only thing I can say is not completely terrible is the fog.

I am now on day 3 without any medications at all...and I really just feel terrible. It is almost like I am herxing but I'm not on anything! I have read that Flagyl alone will not do anything but break up cysts. It will not kill the spirochetes that have been freed from the cyst form. So maybe I really messed things up by letting a bunch of bacteria run rampant in my body when they could stayed quiet and calm up in their little ball!

What I'm wondering is...does this sound typical of lyme treatment/symptom relief/return of symptoms/etc?

Part of me says yes because I saw great improvement for a few days after that second Flagyl pulse...and another part of me wonders if it would have just happened anyhow.

You all know I am skeptical of this diagnosis. During those few days I thought...wow...this must really be what's wrong...and the treatment is working! And now that I am down again, I am questioning everything.

I know that I cannot stop. I know I have to keep going even if it's just to see what happens. We all know the result of doing nothing, so when I think about that...I know I have to keep fighting. I'm currently trying to get my stomach back into shape so I can try meds again. I have calls in to find out if my PICC can be covered...even though I'm so nervous about the gall bladder issues that come along with IV Rocephin. I found myself saying earlier...is the possibility of losing an organ really worth the possibility of some symptom relief? LOL. I hope the Actigall works and I will not have to get my GB removed like many have.

Okay, I'm rambling...but if you've read this and have any insight...feel free to share. I do hope I get to a point where I can tolerate the Amoxil again and long enough to try it throughout my next Flagyl pulse so I can see if I can kill anything and get any relief.

Thanks a lot,

Jen

Posted 8/14/2009 5:17 AM (GMT 0)
jen, did you ever do a WB test? i'm curious.. if you did, how many bands were positive on the IGM?
Posted 8/14/2009 8:38 AM (GMT 0)
Hi Jen,

I'm sorry you are suffering. I know that drug treatments are very popular but some people cannot tolerate them or are/become allergic to them. If you get tired of trying the meds, you could try some natural treatments and find a good naturopath to work with an llmd willing to do both styles of treatment. Maybe you need more support for your body to be able to tolerate the meds. Everyone is different and maybe you would get a better response using some other methods. My daughter and I hoped for a "quick fix" with western style meds, but our bodies could not handle it and we had to stop doing most of the "western" drugs. There was no point killing ourselves before we killed the "germs". Natural methods are not a quick fix, but for us, it was the only choice we felt we had left. We have not found the "magic bullet" but we keep trying. It is a long, slow road to treat this rotten group of "germs" so we continue to pray that "they" will find some real CURES soon.

I hope the docs can figure out how to help you soon. Wishing you all the best, bablymers mom
Posted 8/14/2009 1:29 PM (GMT 0)
Hi Jen,

I can't help you with the progression of events, since I know even less than you there! But I can understand doubting the diagnosis. If you saw my first post here, you'll know that I wasn't sure I had Lyme either. It's a tough one, because the tests are so innacurate, and the symptoms so vague.

I would do the same thing you would, except backwards. On bad days, I would think maybe I did have Lyme, but on good days, I'd start to doubt everything I felt on the bad days. What I had to do was realize the ups and downs were just further proof of Lyme.

Of course, it's not as easy as that sounds. I still have days where I worry it isn't Lyme. But I'm going to keep treating unless I find proof that it isn't Lyme. 2.5 months is not a very long treatment time for Lyme, especially when you've had stomach problems that make your treatment inconsistent. Stick with it, and I really think you'll have results.
Posted 8/14/2009 4:50 PM (GMT 0)
James...my WB results are as follows:

IGM:
30+
39 IND
41 IND

IGG:
39 IND
41 +++
58+

I had this test done after almost three years of being sick...so I would think the IGG would be the better test to look at.

Nicky,

I hadn't had ONE good day in almost FIVE YEARS. Of course, things were easier a year ago, two years ago, etc, than they are now...but after the second pulse of Flagyl and Biaxin combo...I felt how I felt probably two years ago. Even my anxiety lessened.

My stomach is so messed up...I'm taking probiotics and today I woke up again this morning with stomach problems. I can't seem to get regular...perhaps I need to eat even MORE yogurt!
Posted 8/14/2009 6:08 PM (GMT 0)
jen,

how many + does it take to be at a positive with the CDC? i'm confused.. if you have 1 + band, doesn't that mean POSITIVE? i have one band on 30 also. if the igm is about a recent infection, does that mean that the igg means nothing.. i'm confused on how the igm and igg work, i know igg is past infections, but can that be herpes? mono? or is this only tested for bacteria? no doctor has explained this well to me..

i would think that the igm is pretty good..
Posted 8/14/2009 6:27 PM (GMT 0)
i am IgM positive and IgG negative. but i was infected i believe in NJ. 2000 to 2002. so you would thing i would show up as IgG positive, meaning old infection. it was explained to me that even if its a old infection it can show up as a new one many yrs latter.

and Jen you have some lyme specific bands 30 and 58, from all i have read.

i wish you well soon and hope this helps.

¤°´¯BIG.¤*¨*¤(¯`´¯)¤*¨*¤.Hugs¯`°¤.
Posted 8/14/2009 6:31 PM (GMT 0)
Hi

To explain about IgG and IgM bands.

IgM- this shows up for recent infections, but it will also show up for chronic Lyme, because as the spirochetes change the protein structure on their outsides, your body thinks its a new infection.

IgG- this shows long term/chronic infections. For chronic Lyme, you usually have many more IgG postives than IgM. Herpers or Mono will not show up here, because the WB is looking for specific things. Certain bands (like 41) CAN cross-react, but only with Gum disease and syphilis. So if you don't have syphillis or gum disease, and band 41 is positive, it means Lyme.

CDC positive and Igenex positive and LLMD positive are all different. The CDC only looks at 10 of the bands (and they are totally arbitrary), and I think you need 5 positives. Igenex positive is different...it says on the test, I don't remember right now. But it's not as rigorou.s

And because you can be sero-negative, but have Lyme, most LLMD's will treat negative tests. My LLMD says that he'd consider 2 bands to be positive and 100% definitive of Lyme, but he's treating me even though I only have 1 postive and 1 IND.

Jen Days- your IgG is almost identicall to mine, except for band 58. I would think that it strongly points to Lyme.

I have a detailed explanation somewhere...I'll try to dig it up
Posted 8/14/2009 6:43 PM (GMT 0)
Ok. I couldn't find it on my PC, but I googled it, and I have a link.

http://www.mdjunction.com/lyme-disease/articles/dr-cs--western-blot-explanation---lyme-facts
Posted 8/14/2009 9:36 PM (GMT 0)
Nicky,

Thanks for the explanation. My LLMD explained it to me years ago but it's hard to remember it all.
Posted 8/14/2009 9:53 PM (GMT 0)
so how serious is just 1 positive band on the IGG? will it always be positive? i guess i had lyme for years then, and never knew it until i got sick. wow!!
Posted 8/15/2009 12:13 AM (GMT 0)
James...there is great controversy when it comes to tests 'always' being one way or another...I don't think anyone will tell you that once you feel better, your positive bands will disappear. I'm sure it happens...but the bottom line is that lyme is much more a clinical diagnosis than anything else.

Like Nicky said, some LLMDs treat regardless of test results. My doctor just told me at my last visit that he had a man come in with NO positive bands, started treatment because the doctor believed it was lyme, got better, and THEN had positive bands appear. This can be due to immune function, or as stated above, the spirochete changing form in the body. They are evasive little things and can hide from labs and bodies. It is that precise ability that allows them to survive and attack for so long.
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