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CarlaB

The Lyme Disease Thread

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Cici,

I don't have lyme so don't post on here much. Just wanted to let you know that Carla is on vacation and won't be back for a few weeks. Sherry or some others will hopefully see this and be able to tell you what to expect.

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OK, so I got a stack of lab test results from my doctor, and as I read them, it looks like I've tested positive for Lyme. I'm seeing the doctor on Tuesday, so I can talk to her then. But I thought I'd run this past you folks to make sure I'm reading it right.

First, there is a test from IGeneX for "IFA, B Burgdorferi" which says "1:80 Titer" and the range says anything equal to or greater than 1:80 is positive.

Then there is a "Lyme IgG western Blot" that is positive at bands 34, 41 and 58 kDa. And a "Lyme IgM Westen Blot" that is negative at all the bands.

Finally, there is a "celiac disease-57" on which I scored a 54. There was a letter with the test that said anything under 60 is positive for Lyme, and that people who are cured of their infection should be over 180.

I was also positive for EBV, HHV-6, HSV-2 and mycoplasma pneumoniae viruses.

Everything else was normal.

So am I reading this correctly? Does it sound like I have Lyme disease? If so, what can I expect with respect to treatment?

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Hi Tommy.

With you CD57 test being that low, it sounds like lyme. You don't have a lot of positive bands, but since you post positive of other things it may be that it's suppressed (in hiding). Of the 3 bands you posted as positive on the IgG, 34 is specific for lyme.

I'm not an expert though and I don't have lyme. Just check here on my lyme friends.

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Thanks, Andrea!

A little more info: On the IgG test, the legend says that 2 or more bands is considered positive. next to the 58 kDa band, my doctor wrote a note (her handwriting is terrible!) that says "suspect co-infection".

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First, there is a test from IGeneX for "IFA, B Burgdorferi" which says "1:80 Titer" and the range says anything equal to or greater than 1:80 is positive.

The IFA is not 100% specific for Lyme Disease...so this test alone cant confirm the disease. My results were 1:160. I live near Igenex so went and talked with the lab director a couple years ago when I got all my results in. The way he explained the IFA was that it is a "collection" of antibodies. The test has a sensitivity of 100% but it is only about 82% specific for Borrelia.

It means that it is entirely possible for other infections to make this test come back positive.....including the viruses that you do have. It is more specific for Lyme then it is for the other infections...however, any one of those viruses could cause the test to be positive...even without having Lyme.

Then there is a "Lyme IgG western Blot" that is positive at bands 34, 41 and 58 kDa. And a "Lyme IgM Westen Blot" that is negative at all the bands.

The 34 band is specific for Lyme (39 is the most specific). According to IgeneX standards this would be a positive test because 34 and 41 are both critical bands. In most cases of infection IgG indicates past infection...and IgM would indicate current infection. With Lyme Disease either one can indicate current infection.

Finally, there is a "CD57" on which I scored a 54. There was a letter with the test that said anything under 60 is positive for Lyme, and that people who are cured of their infection should be over 180.

This suggests active infection which would require treatment. The CD57 is not a "proven" test....however, it can be very helpful in making the diagnosis. My personal opinion is that this is a valuable test.

I was also positive for EBV, HHV-6, HSV-2 and mycoplasma pneumoniae viruses.

These infections are common in patients with Lyme Disease. I have not ever heard of any person with chronic Lyme who doesnt also have additional infections.

So am I reading this correctly? Does it sound like I have Lyme disease? If so, what can I expect with respect to treatment?

Yes, it does appear that you have Lyme. My advice would be to see an LLMD who covers all aspects of the disease....including checking for heavy metals and other issues. You should also be tested for co-infections as the majority of people with Lyme also have additional infections transmitted from a tick bite (babesia, bartonella, RMSF, Erhlichia).

Do you have an LLMD?

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Thank you, Rachel.

I feel pretty confident about my doctor. She is a specialist in CFIDS and she has lots of experience with Lyme disease. She was at least smart enough to test me for Lyme. The biggest downside is that she's 3 hours away. I have an appt with her on Tuesday, so I'll know more then.

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Tommy and Cici, congratulations on finding an answer .... you are now on your way to being well. :) I see Rachel and Andrea have answered your questions well. I agree that band 34 is specific for Lyme. IgG CAN but does NOT always indicate a past infection. If you have symptoms, it definitely indicated CURRENT infection. I was IgG positive myself, and clearly have Lyme. I tell you this so you don't accept someone saying you used to have it .... you have proof that you were exposed, and any symptoms indicate you are sick.

CiCi, there are many manifestations of Lyme. I'm in Germany with 5 other Lymies, and we all five have different presentations.

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Thanks for all of your replies.

As I mentioned in my original post, I have an appt with my doctor on Tuesday, but in the meantime I've been doing as much research as I can. I found a paper by a Dr. Burrascano that seems to be one of the leading summaries. What can I expect for the first 2-3 months of treatment? It sounds like large doses of antibiotics for long periods of time is the core treatment. Can anyone give me an idea of what I might expect? There's quite a bit of mention of IV antibiotics; have any of you used them? How does that work?

tia!

(and feel free to call me 'Pesky Tommy' with all these questions of mine!)

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Hi Tommy,

Yes large doses of ABX plus herbs to support the body and enhance treatment. Hopefully you'll be screened for other things, such as metal toxicity.

Are you celiac as well? A low carb diet is good too, lyme feeds on the carbs.

Be prepared for what we all call a "herx" from the term herxheimer. The spirochete borrelia gives off toxins when it dies, so cycles of flu like response to treatment is to be expected. It is not fun!

Also be prepared to not see a lot of improvement for awhile. Depends on your situation. It took me 8 months on abx to start to see improvement, but I did have some clear herxes from the beginning which kept the doctor willing to keep treating to see what would happen.

IV is not usually done first. I've had it, for a few weeks. Often a PICC line is put in so that they don't have to stick you every time. I think I had a daily dose if I remember right. It is very hard on the gut flora. You have to balance treatment to not allow yeasts and fungi to take over. I was also on antifungals for a long time, with monitoring of liver enzymes regularly.

Sherry

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Thanks for the info, Sherry. My doctor's appointment is later today -- I'm getting kinda anxious!

Yes, I definitely have celiac disease (and so does my sister), and have been hanging around in the celiac disease forums for about 3 years -- I've just never had any cause to wander over here to the lymies thread! I've been gluten-free for almost 2.5 years and gotten much better. I started getting sick more than 10 years ago, and my gut issues have pretty much resolved. I still have huge problems with sleeping and fatigue, as well as severe allergies to everything (which started suddenly 10 years ago), stiff joints, itchy skin and excessive thirst. So lyme disease would explain a lot, including what triggered my celiac disease.

That first round of blood tests included tests for fungi, parasites, vitamin/mineral deficiencies, food allergies and neurotoxins. I'll ask my doctor about the heavy metals.

Also, I went to some of the lyme disease sites to look for info on LLMDs, and they all referred me to. . . . my current doctor. So she seems to be the go-to person out here on the Frozen Tundra.

Thanks for all of the support. I appreciate it!

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I had my follow-up appt this morning. He said my lyme test was one of the most positive he's ever seen. He changed my digestive enzyme and probiotic, plus gave me some new supplements (in addition to the 12 I'm already on) and 4 new prescriptions. He also told me to eat 1 inch of fat-free pringles every day to help detox. I thought that was very interesting. My diet is based on my immunolab results and adding in some specific carbohydrate principles. He did tell me that I have to do all of this for at least a year.

I'm a little overwhelmed at this point.

I have never tested positive for celiac, but have allergies to wheat, rye, oat, etc, so am on a gluten-free diet anyway.

Cici

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Tommy, we'll look forward to your update. You and I are in the the same boat, both celiac and lyme. My lyme was diagnosed 7 years before the celiac though. Sleeping issues are very common with lyme as are the joint symptoms. People have tons of symptoms--after you start treatment you'll know more about what is related. After you get started on your regimen, maybe we can give you some ideas about sleeping that have helped some of us.

Cici, I am assuming you've started abx? You may want to keep a symptom record for awhile to help your doctor track the effectiveness of the meds. You may have a herx--some do as soon as 2-3 days on meds. After that they tend to be cyclic. That detox method sounds yummy :) but not for me on the SCD!

It is overwhelming, especially when you herx! Be kind to yourself! One thing about feeling miserable in response to the meds...after you are through that, you may have a period of feeling a lot better. (Though that might not come right at first). Eventually you'll just KNOW that you are on the right track.

Sherry

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Well, I went to see my doctor today, as sure enough I've got lyme disease.

At least she isn't messing around -- she gave me a 25 page protocol she uses for treating lyme. I have prescriptions for 3 antibiotics (doxycycline, flagyl and ceftin), as well as nystatin. She also gave me B12 -- I'm supposed to give myself a shot every other day. Plus the usual supplements: multivitamin, Vitamin C, Mg, fish oil, DHEA, probiotics and digestive enzymes. The only supplement I haven't heard of before is called "Adapt 232" -- it's an adrenal support supplement. Oh, an a prescription sinus rinse.

I'm feeling pretty overwhelmed right now, too. Blech!

CC: I may be wrong about this, but don't Pringles chips all contain wheat?

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Tommy, sounds like a good treatment beginning. Doxy gave me a lot of nausea, and eventually sun sensitivity but it is a good abx for lyme. Hope you do well. Ceftin worked very well for me. Flagyl is rough but is very good for getting at the cyst form. Do you take flagyl every day? I hope you can get a break. My DH and I used to joke that I was "flagyl-ating" every week on the two days I took it because I would be fatigued and achy and upset to my stomach.

Hang in there. Let us know how you respond. If you and Cici start to herx, let us know. There are some detox things we have found helpful and maybe we can make suggestions.

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Mftnchn has been giving great answers. :)

Tommy, I recommend (I'm not doctor ;) ) that you start on one med at a time and wait at least a few days to see how you react to it before you start the next. You are on a powerful, aggressive combo, which is great, but give yourself time to ease into it. I had to take Prilosec with the doxy .... doryx is another form of doxy that is easier on the stomach, so if you have trouble, you might ask to try it. Take doxy with a meal, not just a small snack.

STAY OUT OF THE SUN!!! I got sunburned through my car windows while driving!!! It's good that it's getting darker out, it's an easier time to take doxy. I had to wear gloves to drive, #30 and I'd still get sunburned through the car windows on my hands.

I'm glad both of you discovered this and have started treatment. :)

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I was fine on doxy for awhile, and then very suddenly started getting sunburn--and oh my, it was bad. It took me by surprise.

I agree taking it on a full stomach, even so, I just had nagging nausea on it. I was able to cope with small snacks and just enduring.

The powerful regimen is good because it takes the lyme by surprise and it doesn't have a chance to hide away.

Sherry

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I had my follow-up appt this morning. He said my lyme test was one of the most positive he's ever seen. He changed my digestive enzyme and probiotic, plus gave me some new supplements (in addition to the 12 I'm already on) and 4 new prescriptions. He also told me to eat 1 inch of fat-free pringles every day to help detox. I thought that was very interesting. My diet is based on my immunolab results and adding in some specific carbohydrate principles. He did tell me that I have to do all of this for at least a year.

I'm a little overwhelmed at this point.

I have never tested positive for celiac, but have allergies to wheat, rye, oat, etc, so am on a gluten-free diet anyway.

Cici

Sorry to butt in here folks but I was fascinated by that one. How can Pringles, even fat-free which are high-carb and salt and have added 'stuff' possibly help the body detox????

Yuk - they always take the 'roof of my mouth' off and leave it feeling horrible.

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Sorry to butt in here folks but I was fascinated by that one. How can Pringles, even fat-free which are high-carb and salt and have added 'stuff' possibly help the body detox????

I found that interesting as well .... I have heard that potatoes help detox by absorbing toxins .... but to leave the skins on.

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It is the Olestra in the Pringles to help detox. I was surprised by that as part of my treatment, as well, but I like chips, so I'm good with it. :)

I have Rx for Nystatin, Plaquenil, Cerefolyn, and something else - starts with an M. I did 3 IV treatments of zithromax last week, as a response to my horrible immune levels in my gut, but I think I may have had the die off symptoms from that. What should I expect in terms of herx?

I appreciate all the help and advise from everyone!

Cici

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I picked up the following information about Olestra, Cici. I'm struggling to figure out why your doc thinks it is good for detox!

Olestra is a fat-based substitute for conventional fats. FDA approved olestra on Jan. 24, 1996, for use in certain snack foods. The agency requires all products containing olestra to be labeled with specific health information.

Procter & Gamble Co. developed olestra, which it is marketing under the trade name Olean.

Because of its unique chemical composition, olestra adds no fat or calories to food. Potato chips, crackers, tortilla chips, or other snacks made with olestra will be lower in fat and calories than snacks made with traditional fats.

Olestra may cause abdominal cramping and loose stools in some individuals, and it inhibits the body's absorption of certain fat-soluble vitamins and nutrients. FDA is requiring Procter & Gamble and other manufacturers who use olestra to label all foods made with olestra and to add essential vitamins--vitamins A, D, E, and K--to olestra.

As a condition of approval, Procter & Gamble will conduct studies to monitor consumption as well as studies on olestra's long-term effects. FDA will formally review these studies in a public meeting of the Foods Advisory Committee within 30 months from the date of olestra's approval.

The following labeling statement will be on all products made with olestra: "This Product Contains Olestra. Olestra may cause abdominal cramping and loose stools. Olestra inhibits the absorption of some vitamins and other nutrients. Vitamins A, D, E, and K have been added."

Like all food additives, olestra's safety was the primary focus of FDA evaluation. For olestra, the safety evaluation focused not only on its toxicity, but also on the product's effects on the absorption of nutrients and on the gastrointestinal system.

Studies of olestra indicated it may cause intestinal cramps, more frequent bowel movements, and loose stools in some individuals. These gastrointestinal effects do not have medical consequences. The required labeling will give consumers needed information to discontinue the product if appropriate.

Clinical testing also indicated that olestra absorbs fat-soluble vitamins (vitamins A, D, E and K) from foods eaten at the same time as olestra-containing products. Studies also demonstrated that replacing these essential nutrients in olestra-containing snacks compensates for this effect. This information will also be included in the product labeling.

In addition to inhibiting the absorption of essential vitamins, olestra reduces the absorption of carotenoids--nutrients found in carrots, sweet potatoes, green leaf vegetables, and some animal tissue. The company's postmarketing monitoring of olestra consumption levels and additional studies will provide FDA with further information about olestra's effects on the absorption of carotenoids. The role of carotenoids in human health is not fully understood, and FDA is continuing to monitor all available scientific research on it.

In addressing these questions, FDA evaluated more than 150,000 pages of data on olestra, drawn from more than 150 studies. Procter & Gamble submitted these data in its original 1987 food additive petition and in several subsequent amendments.

In addition, FDA sought advice from outside experts through its Food Advisory Committee. A special working group of the committee met in public in November 1995 to review and discuss the safety questions about olestra. The working group evaluated data presented by FDA, the company, and organizations and individuals both opposing and supporting olestra's approval. A clear majority of the working group agreed that all major safety issues had been identified and addressed by the FDA review, and that the data provided reasonable certainty that the proposed use of olestra would be safe. A majority of the full Food Advisory Committee reaffirmed that judgment.

http://www.cfsan.fda.gov/~dms/qa-adf8.html

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Tommy, I recommend (I'm not doctor ;) ) that you start on one med at a time and wait at least a few days to see how you react to it before you start the next. You are on a powerful, aggressive combo, which is great, but give yourself time to ease into it. I had to take Prilosec with the doxy .... doryx is another form of doxy that is easier on the stomach, so if you have trouble, you might ask to try it. Take doxy with a meal, not just a small snack.

Thanks, not-Dr. Carla!

I didn't get into all the details in my post, but my doctor gave me a protocol to follow, where I start with one drug, build up the dosage, and cycle the different antibiotics. So I won't be taking a big mouthful of all three at the same time. She literally gave me a chart which shows what pills to take each day, and what time of day (rising, bkfst, lunch, dinner, bedtime) to take each drug and each supplement. She said to take all the abxs with food, and I'm not supposed to take certain supplements with the drugs, etc. So it sounds like most of what she said is consistent with the experience of you and the other posters.

Oh, and BTW, I'm up in Minnesota, so I don't expect to even SEE the sun until next April . . . .

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Something interesting happened today, and I thought you might enjoy hearing about it.

I filled my prescriptions earlier today. My doctor had told me that when I did so, a pharmacist would come out and try to talk me out of taking all these pills. I was supposed to insist on the drugs and tell them my doctor had discussed them with me thoroughly.

It took a while, but when they finally called my name at the pharmacy, sure enough there was a pharmacist at the counter instead of the woman who had been handing out all the other prescriptions. So I prepared for battle.

But instead of being negative, she said, "Do you mind if I ask -- is this for lyme disease?"

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