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CarlaB

The Lyme Disease Thread

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TS, that's GREAT! About two weeks.

Sarah, if you're not sick, there's really no need to treat. Lyme diagnosis is clinical -- symptoms plus blood tests to support diagnosis.

If you have no symptoms, there is no need to treat a disease your immune system is handling on its own. Besides, treatment at this stage is for remission as you can never be sure you get all the bacteria out once its established. You treat until you are symptom free for two months .... if you are already symptom free, what's the point?

But, be sure to read the symptoms, you may have more than you realize! With few symptoms, you can treat for a shorter length of time ... my daughter is only looking at a few months of treatment while I'm looking at a few years.

On the other hand, you had the bullseye rash, so you have been exposed ... so eat right, get lots of rest, exercise, and avoid stress. I know, avoid stress ... all four times my Lyme has become active were under times of great stress! Had I known, we would have made different decisions than we did.

You might also want to take a good multiple vitamin/minerals to be sure your body is getting what it needs. Plus, natural antibiotics like garlic, etc.

For most of the time I have had this I have been healthy by doing these things. It's best of course to read up on this on your own as well ... I'm not a doctor :)

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If you have no symptoms, there is no need to treat a disease your immune system is handling on its own. Besides, treatment at this stage is for remission as you can never be sure you get all the bacteria out once its established. You treat until you are symptom free for two months .... if you are already symptom free, what's the point?

But, be sure to read the symptoms, you may have more than you realize! With few symptoms, you can treat for a shorter length of time ... my daughter is only looking at a few months of treatment while I'm looking at a few years.

Ah, now this really helps clear up a couple things I was still confused about! I couldn't figure out if you can be cured of Lyme or not. So that's more of a possibility if you catch it early? And this all makes sense to me. If, at this late date, there's no way to be sure that treatment would get rid of it completely, then there seems to be no point in it when I'm not sick.

But I will look over the symptom list again, more closely this time. I can certainly make an effort to eat better, there is definitely room for improvement in that area. :lol:

I do take a good gluten-free multivitamin- actually I take prenatals, and have since I was pregnant with my youngest. I became anemic with that pregnancy, and had a very hard time getting my iron levels back up. So I stayed on prenatals to help with that. (With the extra iron, my levels stay normal.)

I have been on an above average number of antibiotics in my life- I wonder if that has helped me out??? The antibiotics were for: multiple strep infections every year for years (never had my tonsils out because we moved a lot, and every time we told a new doc that the last doc recommended a tonsilectomy soon, the new doc would say, well let's wait and see if I can fix it :rolleyes: ) multiple bouts of pneumonia, and most recently, ear infections and chronic sinus infections.

The longest I've been on an antibiotic was about two years ago, for a particularly bad bout of pneumonia. I was on several different antibiotics, including Omnicef, Augmentin, Levaquin, and Bioxin, for a total of about 5 weeks. Doc discussed IV antibiotics at one point, but I couldn't afford it. Bioxin was the last one I took, and I quit taking it because it made me sick and throw up all the time. The pneumonia was almost gone at that point anyway.

Anyhoo, I'll look over the symptom list again, and probably post here again. I know you're not a Dr, but you've had a lot of experience and I value your opinion! :D I've been trying to do some reading, there's tons of good links on LymeNet, but it's a little overwhelming!

Thanks again Carla!

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Sarah, yes, no point in treating if NO symptoms, but if you have a FEW symptoms, apparently there is. At least that's my LLMD's take on it.

I was talking to the PA about whether a person like my son, who only has a stiff neck and a constant need to clear his throat, would be treated with a positive test. She said yes because it's easier to get rid of when it's not as bad of an infection.

This kind of contradicts the fact that if you've had it a while you will working for remission of symptoms rather than cure, however, even with few symptoms, I guess you're not really in remission.

Levaquin is used for treating a Bartonella coinfection (I'm on it now for a three month round), and Omnicef is one of the drugs used for treating Lyme.

Repeated infections can be a symptom.

It's a hard call ... I'd look over the symptom list carefully. :) There are herbal protocols as well ... those you can do on your own. When I'm done with abx, I plan on staying on herbs to prevent relapse. Cowden is the protocol my LLMD prefers.

www.canlyme.com has good articles, too.

To be totally honest, if I had minimal symptoms but knew I had been exposed, I'd have gone on an herbal protocol as a preventive measure and to hopefully take care of the symptoms I was having. If I had known what was wrong before getting really ill, that is what I would have done because I know I could have prevented this flare up if I knew what I was fighting.

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Hmm... One thing that bothers me, going over this symptom list, is I'm seeing a few that have cropped up suddenly, and recently- like within the past few months. There's also a few that have been around for a long time. Ok, I'm just going to lay it out there for your opinion. :( A little embarassing. But some of these are very common, and then a couple are less common. The question is what do they add up to.

#6 Headache, mild or severe-- Yeeeah... Probably more than the average person, but a lot of my headaches are from sinus trouble.

#11 Stiff or painful neck-- This has been bad for the past couple months, but I've always been one of those annoying people that's always popping and cracking their neck.

#14 Sore throat, clearing throat a lot, phlegm-- This has been for a looong time. It's not totally continual, but I clear my throat more than anyone I know.

#24 Diarrhea

#25 Constipation-- For years, I've bounced between D and C. This has leveled out a lot since I went gluten-free.

#28 Bone pain, joint pain or swelling-- This began in July, starting with my right knee. Doc said it's probably bursitis due to lots of gardening. Gradually, my left knee began to do the same thing- pain and swelling, and in the past few weeks my left elbow has joined the fun. This symptom concerns me a bit. I was also diagnosed with degenerative disc disease when I was 18, and have had multiple herniated discs (seen in MRI) which seem to heal and then re-rupture every so often.

#29 Shortness of breath, can't get full/satisfying breath, cough-- I do get out of breath easily, and this has worsened this year. Might just be from being out of shape, which I am.

#33 Night sweats or unexplained chills-- I freeze at night, when hubby and kids feel fine. This has been only for the past five years or so.

#36 Tremors or unexplained shaking-- This is a weird one I used to get when I was a teen, only when trying to go to sleep. It'd come and go. Hasn't happened in many years.

#45 Unusual depression-- Not sure what this means, what depression is usual?? I have had problems with depression since teen years, am a poster child for postpartum depression, and am currently on Effexor.

#49 Too much sleep, or insomnia

#50 Difficulty falling or staying asleep-- I often have a hard time sleeping at night, and a hard time staying awake during the day. Probably due to the fact that Ezra has always been a bad sleeper, and it's become habit.

#60 Loss of sex drive-- :ph34r: Probably due to medication.

#66 Extreme fatigue-- I am tired a lot, but again, I don't sleep well at night, and I do have two little kids.

#69 Continual infections (sinus, kidney, eye, etc.)-- Yep.

Well, that's all of them, I think. More than I thought. And if you actually read through all that, I'm massively impressed ;)

I'm very interested in the herbal treatments you mentioned, and I'm going to try to find some info on the Cowden protocol.

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Carla has given some good advice. I'm not on antibiotics yet. At this point I've had lyme for several years and have got a lot of OTHER stuff going on, like mold exposure, heavy metals, etc. I AM taking some herbal stuff specifically for the lyme, which I think is helping. I have a team of doctors who are trying to give my body the supplemental support it needs to fight the lyme, but I think they are also trying to take some layers of burden off my body, but getting rid of some of this other stuff first...at this point it's hard to tell what symptoms are caused by what because they overlap so much. I've got (or have ahd) about 47 off that list of 75 symptoms!

Ridge...your history sounds a lot like mine. I was on antibiotics for a period of about 3.5 years for multiple chronic sinus infections. The strength of the antibiotics was increased regularly until at the end of that cycle I was taking 4,000mg of augmentin a day! No joke. I'd get a new infection just about a week or so after I'd finish a round of antibiotics/prednisone. I DO think that the high doses of antibiotics helped with the lyme a bit somehow. One time they put me on zithromax and one time I was on levaquin, which are both used to treat co-infections. I think that helped too.

My best estimate is that I contracted Lyme in 1995. My symptoms were very mild though...a flu like illness, then repeated bouts of bronchitis, but not too close together to start putting it together, but eventually, the infections kept getting worse and much closer together and turned into sinus issues mostly.

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I would get checked out by an LLMD, Sarah. That is quite a list of symptoms ... you have probably been like me and had so many of them for so long you just assume everyone feels this way!

I could have written a very similar symptom list a little more than four years ago when this all started to get worse. It took me four years to figure out what it was, then I started getting treated. As that four years went on, I got more and more symptoms till I had over 40 of them on the list. :o

I would susptect both Lyme and Babesia. Babesia causes night sweats and air hunger. So, as you're researching, include babs ...

Prior to four years ago, I could have only listed maybe four symptoms at the most .... that is when I would have given herbs a chance ... but at the point you are at, I would see an LLMD. It certainly wouldn't hurt to get tested, and if you have it, get treated before you would describe yourself as seriously ill. :) ... especially since they're creeping up within the last few months.

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My sense is that it is worth a full assessment. Besides the lyme, the heavy metals seem to be another factor. At least be sure these are okay, as this may ultimately overcome your system if you are not getting rid of them.

If it was me I would pursue it. I had 17 years of joint and muscle pain, which had a huge impact on my life--the energy I had to give my family and to participate in activities. I know now that all of this could have been prevented with adequate treatment. I did seek treatment just didn't get the answer I should have. With treatment I not only got over the pain, but fatigue improved a lot as well as brain fog and positive wellbeing. Much of that I had accepted as just "life."

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Hi.

Most of my symptoms exploded when I got pregnant with my first, and when I had some severe stressful issues in my life.

I pretty much was asymptomatic up until this time.

I played in the woods alot and my dog always seem to get ticks on her.

I estimate I have had at least 45 of the symptoms on the list, many neurological.

One of the most severe symptoms that has never gone away is the severe head and neck pain. At first I thought was from my severe TMJ, but have been in splint therapy and still the pain is unbearable at times.

I too have had many rounds of abx for sinus infections and eventually had sinus surgery which didn't keep them from coming. It wasn't until I had been on a candida diet that the sinuses cleared up. If I cheat at all it comes back.

I hope this helps some with piecing the puzzle together.

TS

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TS are you wearing a 24/7 splint? I wore one for months, and now have braces. NO MORE PAIN!! :) It works.

When I had few symptoms, every time I got pregnant I would flare. The flare would end when the baby was born. I really think stress can trigger the Lyme to become active.

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Hi Carla.

Yes I wear a hard splint 24/7. I can't touch my back teeth. This is my 3rd splint and hopefully my last. I've had TMJ for over 20 years that started when I had braces in my teen years.

It got so bad It locked shut and I was in severe pain. I went to a wonderful TMJ Dr. in Ohio and he unlocked my jaw.

Unfortunatly my discs are flat as pancakes and totally dislocated.

I actually just started prolotherapy injections in my TMJ, and the pain is greatly reduced.

I am really trying to avoid braces. I don't want anymore metal in my mouth.

My fibromyalgia symtoms (and now possibly Lyme) always flared when I was pregnant too, but never subsided after delivering. It seems to just have gotten steadily worse.

I've been on the candida diet for almost 2 years now.

Much of the fibro symptoms have gone away, I'm sleeping a bit better, sinus problems gone, but those darn mental symptoms, adrenal symptoms and that neck and buttock pain just keep getting worse.

This is why I'm pursuing the Lyme and detoxing the metals as safely as I can.

I'll keep you all posted.

TS

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I called my Holistic Alternative Dr. to see if my IGenX Lyme test was in as it had been like 20 days sence IGenX received it. I was real nervous.

The receptionist said it's good news I was negative. I said, could I pick up a copy and she said they were closing at noon so I said I'd be there in 10 minutes. Whoa I was shaking all the way there because I know from this thread and what all of you with Lyme said about CDC standards and such, I would have to have a LLMD determine if it was really neg or positive.

Here it is.... I think it's positive but I'm not 100% on the specific bands. I will be relieved either way as I can focus on Heavy Metal toxicity or pursue a Lyme treatment.

Thanks.

IGENEX IGM Result-Positive

CDC/NYS Negative

18kDa. -

22kDa. -

**23-25 kDa. IND

28kDa. -

30kDa. -

**31kDa. ++

**34kDa. -

**39kDa. IND

**41kDa. ++

45kDa. -

58kDa. -

66kDa. +

73 kDa. -

**83-93 +

IGENEX-IGG-Result NEGATIVE

CDC/NYS-RESULT NEGATIVE

18 kDa -

22 kDa. -

**23-25 kDa. -

28 kDa. -

30 kDa. -

**31 kDa. IND

**34 kDa. IND

**39 kDa. -

**41 kDa. ++

45 kDa. -

58 kDa. +

66 kDa -

73 kDa. -

**83-93 kDa. -

I anxiously await any feedback on this test. I also need to review this thread as I forgot just about everything.

And of coarse I will have a million questions later.

Thanks,

TS

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Hi TS, somehow I missed this most recent post.

When they wean you off the splint, they need to do something to make your back teeth grow together ... they can cut off the back part of the splint, then the back two teeth will grow longer. Right now my back teeth are longer than the rest .... I'm at the point where I no longer wear a mouthpiece because my back teeth hold my jaw where it needs to be .... the longer teeth keep the separation that the splint created. The other teeth will now grow to fill in the gaps.

I had such a bad bite that they had to use braces otherwise my teeth would have pulled my jaw back out of place. I had a lot of wearing on my bone. I've also had TMJ trouble since I was a teen.

At this point, my bite is very comfortable. I no longer grind my teeth and there is no more pain. My jaw never cracks anymore either ... it used to crack thousands of times per day ... any time I moved my mouth. The bone damage is still there, of course.

I didn't have any trouble with metals with the braces and even chelated with them on. They don't create a mercury problem. I don't like having the metal, but it was the lesser of two evils ... better to get my jaw fixed and have to chelate again (which I did not need to do), than to deal with the pain of the TMJ.

I'm anxiously awaiting the posting of your IGeneX results. :)

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Oh, there they are!!

According to IGeneX, they are positive! See where it says, "IGeneX positive, CDC negative"?

I'll post some info on what the bands mean in a minute. Band 31 is one of the most specific for Lyme.

Here --

18: An outer surface protein.

22: Possibly a variant of outer surface protein C.

23-25: Outer surface protein C (osp C).

28: An outer surface protein.

30: Possibly a variant of outer surface protein A.

31: Outer surface protein A (osp A). 34: Outer surface protein B (osp B ).

37: Unknown, but it is in the medical literature that it is a borrelia-associated antibody. Other labs consider it significant.

39: Unknown what this antigen is, but based on research at the National Institute of Health (NIH), other Borrelia (such as Borrelia recurrentis that causes relapsing fever), do not even have the genetics to code for the 39 kDa antigen, much less produce it. It is the most specific antibody for borreliosis of all.

41: Flagella or tail. This is how Borrelia burgdorferi moves around, by moving the flagella. Many bacteria have flagella. This is the most common borreliosis antibody.

45: Heat shock protein. This helps the bacteria survive fever. The only bacteria in the world that does not have heat shock proteins is Treponema pallidum, the cause of syphilis.

58: Heat shock protein.

66: Heat shock protein. This is the second most common borrelia antibody.

73: Heat shock protein.

83: This is the DNA or genetic material of Borrelia burgdorferi. It is the same thing as the 93, based upon the medical literature. But laboratories vary in assigning significance to the 83 versus the 93.

93: The DNA or genetic material of Borrelia burgdorferi.

In my clinical experience, if a patient has symptoms suspicious for borreliosis, and has one or more of the following bands, there is a very high probability the patient has borreliosis.

These bands are 18, 22, 23-25, 28, 30, 31, 34, 37, 39, 41, 83, and 93.

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My Goodness! Cannot even the alternative Drs. read the IGenex diagnosis and CLEARLY see it is POSITIVE????????

It does not take a rocket scientist to read POSITIVE. I thought it was positive too but wasn't going to come to conclusions until I've heard from the people who live with this.

Thanks Carla.

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:lol: Yeah, if he's already going against the medical profession and doing alternative treatments, you would think he would also figure out how to read a Lyme test!!

Mine was CDC positive, and my alternative doctor told me I didn't have it despite the positive test. :huh:

Welcome! You're one of those who live with it now. I'm happy that you have an answer and can get to feeling better .... not that you have Lyme, but that you have an answer. :)

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Adding my agreement that your test is positive!! Wow! Now you know what you're fighting at least.

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A quick question here about Lyme expenses.

We are having to choose new insurance. My question is how much should I expect to pay out of pocket for treatment? per year?

Would treatment be covered with a indemnity plan where I have like a 2500 dollar deductable before they cover in full? not sure if this question makes sense?

I guess what I'm asking is will it cost more than 2500 the first year?

Does a LLMD have the ability to diagnose?

So confused with all this.

FYI, I will most likely be seeing Dr. P in NY does anyone here use him/her?

Thanks,

Laurie

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A quick question here about Lyme expenses.

We are having to choose new insurance. My question is how much should I expect to pay out of pocket for treatment? per year?

Would treatment be covered with a indemnity plan where I have like a 2500 dollar deductable before they cover in full? not sure if this question makes sense?

I guess what I'm asking is will it cost more than 2500 the first year?

Does a LLMD have the ability to diagnose?

So confused with all this.

FYI, I will most likely be seeing Dr. P in NY does anyone here use him/her?

Thanks,

Laurie

Most LLMDs are considered "out of network". They do that on purpose so that they are not controlled by the insurance companies. My insurance plan at work pays for 70% of out of network charges. So 70% of my costs for the doctor's appointments are covered. I pay the 30%. That's after I satisfy whatever deductible I have. Last year my deductibles were $500 for in network and $1,000 for out of network, so I'd have to pay all of that out of my pocket. Most insurances cover at least a portion of any prescribed meds. What is probably almost never covered would be any supplements the doctor would put you on. Those can add up. My supplements are my single most costly item I think.

Some of the labwork is covered 100%, some not. All of my Igenix western blot tests were covered.

Because the doctor is out of network, I have to pay him up front, then submit the claim to my insurance company for reimbursement.

Your LLMD will be able to diagnose...they are medical doctors and are able to prescribe and diagnose just about anything any other MD would.

I know Carla's doctor is in NY but not sure if that is him. I'm in California so can't help you with that.

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I see Dr. H in NY.

I haven't turned in my LLMD bills, one reason is, it was more important to have my prescriptions covered when I was on Mepron as it alone was $2200 per month! I was afraid they would stop paying if they knew the diagnosis. My meds did not require preauthorization.

Now, I haven't done it because I've been sick for so long that I'm behind on so much .... I just haven't gotten to it. My deductable is $1000 and this year I have had three appts .... just isn't worth my time for the little bit I'd get from going to all the trouble.

I know I have a friend who has had hers all covered.

My phone consults would not be covered anyway .... they are $125-240 depending on the length .... my actual visits are expensive. I can't think of what the cost is because I always buy supplements when I'm there and my daughter sees him, too, so it's high.

LLMD's are doctors and do diagnose .... they do a differential diagnosis so if it's something else, they will find it. Honestly, my LLMD was the FIRST doctor to do a differential diagnosis on me!!!

If you have three appts per year at $600 per appt (which would be high for the follow ups), it's STILL not $2500!! Phone consultations are not covered at all. Just be sure you have good prescription coverage, I think that is the MOST important thing by far!

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Hello everyone :D

I need advice from the Lyme experts--a person that my husband works with has Lyme-related questions, and is having trouble finding good info--even on the web.

Could any of you point me to a good resource?

Thanks!

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Thanks, Carla--I figured you'd know the best sites. :)

You're welcome.

The ILADS website is probably the most important website .... it's the doctor's organization. There are diagnostic and treatment guidelines there that should be read by anyone who thinks Lyme is a possibility .... both the ILADS version and the Dr. B version.

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