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Old 12-29-2006, 04:35 PM   #1
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Lyme relapse questions

Hi All

Thanks in advance for any thoughts you might have and thanks for bearing with this "brief" history.

I got Lyme Disease in 1999 (then a 35 yr old male) but didn't know it of course. Typical initial symptoms which meant nothing to me (flu & cracking neck). As things got worse my main Lyme Disease symptoms were neurological and cardiac in nature. Symptoms kept getting worse, went to a GP. First possible dx was ALS. Very worried. Sent to Neuro to rule out ALS. Not likely ALS & not MS, possible Fibromyalgia, Chronic Fatigue Syndrome along with some minor Peripheral Neuropathy. After several visits to this neurologist I got the definite impression that the only thing that would happen is treatment of symptoms and no way of getting at or knowing the root cause since all test results were negative. So it was off to another Dr.

By now feeling quite bad, neuro and cardiac symptoms very prominant. Referred to a cardiologist and a different neurologist. 24 hour heart monitor test results looked almost like one solid 8 hour block of "incidents" while sleeping. Given heart meds on the spot. By now I had stopped trusting the Dr's 100% and started researching on my own. I mentioned Lyme to Cardiologist and he said they don't have it where he was from originally (Texas). 2 minutes on Google proved him wrong. He's either uninformed, a BS'er or both which didn't exactly impress me. I wasn't about to have a go with the heart meds with all the possible side effects so I decided not to take them. I suspected Lyme but first Lyme test (ELISA) at first neuro was negative. New GP was more open to Lyme as possible dx. Sent to new neuro. I was prepared this time. History and symptoms all on 2+ single spaced printed pages. Neuro's assistant said, "Impressive", but did read it. Neuro "doesn't believe in Chronic Lyme diagnosis" (that's a direct quote). Hypochondriasis was his dx. I was just happy to get a dx, none of this just treating the symptoms garbage anymore... little did I know. He left it to my GP to explain what exactly hypochondriasis is. I just about blew a gasket right in the Dr's office. She agreed that I should have the newer Lyme tests done but all LLMD's I knew about then were out of my area, so she couldn't refer me and my insurance wouldn't have covered it anyway.

So I decided to "anty up" and took my chance with a full work up done by an LLMD in Hyde Park, NY. My nearly $2K "ticket" was a winner - 2.5 years of no diagnosis was over. Lyme Disease by both IGenex and CDC standards. HGE positive, HME and Babesia negative. By some incredible coincidence I called and found out my tests results right around 9:03am on Sept 11, 2001 which makes that day exceptionally memorable for me to say the least. I thought it was good news that I now knew what I had and I felt that I could now, finally, be on my way to getting better. The LLMD was accomodating of the long distance I was from him and he and my local GP worked well together for me. Long story short, I felt like it had been beaten after nearly 2.5 years of various antibiotic regimens.

I felt fine with no cardiac symptoms and only the occasional muscle twitch or early awakening for the next couple of years or so; generally just chalking them up to: it happens. Then a few months ago (Sept.) I started getting some symptoms back with new ones I hadn't experienced before. I was thinking it might be Lyme again but wasn't sure because I was having these new symptoms that I didn't remember having the first time around. I went back to my local GP who is now quite Lyme Literate. Starts me on Doxy (really seemed to help the most the first time) & Zithromax with the IGenex tests to be done the next week. IGenex comes back negative. IgM Western Blot bands 28, 30, 34, 66 are + while 31, 39, 83-93 are IND. IgG Western Blot band 41 is + while 23-25, 31, 39 are IND.

So finally the questions.

Is it unusual to have a Lyme relapse after feeling fine for 2+ years?

If a relapse occurs is it normal to have different symptoms during the relapse?

My first IGenex test results had 6 +'s and was positive for Lyme. This one has a lot of IND's and is negative for Lyme. Is having that many IND's typical of a relapse?

Thanks again.

 
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Old 12-29-2006, 07:20 PM   #2
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Re: Lyme relapse questions

Hi Crazy Tom. I am sorry you have been through so much and are sick again. When you stopped treatment, had you been symptom free for at least two months?

It is possible you were not treated long enough, and it is possible you were re-infected. I suggest you get tested for all the co-infections: Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. It is estimated that 60% of people who have Lyme are co-infected. Sometimes people test negative intially and positive later on. If you were re-infected, you may have gotten co-infected then. IgeneX tests for all the co-infections except Mycoplasma. MDL in NJ is a lab some Lyme doctors use to test for this.

Below is the breakdown of the Western Blot:

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

I believe the IgM tests for a more recent infection and the IgG a longer standing one. Band 41 is often the first to show, and your is positive. Bands 23-25, 31, 34, and 39 are Lyme specific bands and your are either positive or IND. I think this is significant. Many people who have Lyme do not test positive by CDC standards, which require several bands to be present. Many Lyme doctors focus on which bands are positive, some are specific for Lyme.

To me it sounds like you need further treatment. You also need to be tested for all the co-infections. Will you be returning to the Lyme doctor? Did you see Dr. H. ?

 
Old 12-30-2006, 07:59 PM   #3
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Re: Lyme relapse questions

> When you stopped treatment, had you been symptom free for at least two months?

I don't remember exactly now. I'm fairly sure I was on antibiotics for another month at least, after feeling completely well but I'm not sure about two months.

> It is possible you were not treated long enough, and it is possible you were re-infected.

I'm nearly 100% positive I got it from a tick on my dog. My dog came back with ticks after staying at a "doggy day care" while we were on vacation. We saw them and removed them but obviously not all of them. My dog has been gone for almost 2 years now. My highest risk behavior for catching Lyme disease again would be mowing the lawn. I'm just not around animals or non-paved surfaces that much any more. I honestly can't believe it's a re-infection. I can't imagine where it could have happened again.

> I suggest you get tested for all the co-infections: Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma.

I did get tested for Babesia when the IGenex test was done. I'll find out if any other co-infections where tested for. Thank you for that advice.

> To me it sounds like you need further treatment.

I'm still being treated with antibiotics (since September).

> You also need to be tested for all the co-infections.

Thanks. I'll be finding out exactly what was tested for in Sept.

> Will you be returning to the Lyme doctor? Did you see Dr. H. ?

It was Dr. H the first time but I haven't seen him this time. My local doctor is now quite Lyme literate.

Thanks for all your answers. I do have another question. When my Lyme symptoms started up again it was some minor twitching, tingling and tremors (minor compared to the first time) with the new symptom of breathing problems. I know breathing problems are a symptom of Lyme disease, are they also a symptom of any of the co-infections?

Thank you again for you reply.

 
Old 12-31-2006, 06:24 AM   #4
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Re: Lyme relapse questions

Hi CrazyTom. What antibiotics are you taking? Make sure they are in the recommended dose range for Lyme. You can compare it to the recommendation in Dr. Joseph Burrascano's treatment guidelines.

I believe that Babesiosis, Mycoplasma, and the Ehrlichiosis co-infections can cause breathing problems. Many of the symptoms of all infections can overlap making it hard to tell which symptoms are from which infection.

 
Old 12-31-2006, 04:31 PM   #5
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Re: Lyme relapse questions

Thanks again for replying ticker.

I'm taking two 100 mg Doxycyline twice a day and one 500 mg Azithromycin once a day.

Thanks for the info about Dr. Burrascano's treatment guidelines. I don't think I saw that the last time I had Lyme. I did a quick look though.

I have been taking all the required vitamins for the last few years except for the Co-Q10.

Does anyone know why not to get the Omega's through Flax seed oil? I've been grinding a tablespoon of flax seeds daily for about a year or so now.

Thanks again for all the info.

Have an enjoyable vacation ticker.

 
Old 12-31-2006, 05:52 PM   #6
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Re: Lyme relapse questions

Hi CrazyTom. Thanks for the well wishes!

You may need more agressive treatment. I don't know anything about Flax Seed oil. Make sure you take all vitamins and acidophilus at least two hours apart from the antibiotics.

 
Old 01-13-2007, 06:39 AM   #7
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Re: Lyme relapse questions

Thanks Ticker

My doctor recently switched me to 500 mg Clarithromycin (generic for Biaxin) twice a day and I'm still on the 200 mg Doxycylin twice a day.

I didn't mention originally but I also take 1 fluconozole a day and I have been trying ThreeLac which is an anti-candida supplement along with probiotics. The last time I went through the antibiotics treatments I had terrible candida even though I was on Nystatin and pro-biotics but this time it is being kept at bay fairly well - so far after 4 1/2 months on the anti-biotics.

I do take the vitamins mid-way between morning antibiotics and night antibiotics.

I have to admit, I have probably been taking my probiotics about 1 hour to 1.5 hours after the antibiotics. I didn't know the 2 hour figure. I thought I remember being told (or possibly reading) "at least 1/2 hour after the antibiotics". Thanks for the info, I will try to get closer to 2 hours.

Is that 2 after hours each time you take antibiotics? I have been taking the probiotics once a day, at the end of the day.

Thanks again.

 
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