The Lyme Disease Thread

[CarlaB]

Micah, I agree with Sherry, there are a lot of other issues -- coinfections, metals, etc. -- that need to be addressed. The best thing would be to see if there's an LLMD who will work with you.

However, if there's not, it's not hopeless. You can try the herbal protocol in the book Healing Lyme by Buhner. My LLMD believes that you need abx to lower the bacterial load prior to going on an herbal protocol, but if it's all you have right now ... I'm sure it would help.

About Enterolab vs. Lyme testing -- you already know you feel better off gluten, so the Enterolab test will only support what you already know. You don't know about Lyme, so I think I'd chose the Lyme test.

You can post your results here or on Lymenet. We can help explain what they mean.

The problem you may have with your doctor is that the CDC has a criteria that they use for tracking purposes only ... the problem is, most doctors also use that strict criteria for diagnosis. You might have tests that clearly show you have been exposed, yet they still may fall short of the CDC criteria.

Also, many of the sickest have completely negative results. This is because it's an antibody test and when you have Lyme really bad for a really long time, these tests might not find any antibodies.

[Clark Bent as Stupor-Man]

Thanks,

I actually have a little bit to spend on this...I'm carefully trying to weigh where I'll get the best information for my money. I'm trying to decide if I need to get any or all of the tests at Enterolab or if I should just trust the dietary response. I know I am at least intolerant to gluten now (whether it is celiac or not I don't know), and I think egg, but unsure of anything else so far. I may be barking up the wrong tree, but at least I have a tree to bark up now! I'm starting to have hope - and I haven't had that for a long time. I'm like a pioneer! This may take me a little time because I'm thinking I've got to get an appt with my doctor to ask him if I can bring the kit to him - at least I won't have to pay for the doctor's visit then. I probably won't be able to go to a LLMD though so I would have to figure out the interpretation process. My doctor is a nice person and I think I might could convince him to treat me with longer term antibiotics if I had a test that would back me up somehow. I don't know if I'm chasing an impossible dream here though. I'll check out that website. It's hard having to become my own doctor and I don't even get a degree out of all of my research! LOL

I would sure appreciate any advice.

Thanks so much,

Micah

I think you can get medicaid to cover the Igenex test but I'm not positive... my sister has either medicare or medicaid (whichever one they would give to someone in their 20s who is disabled) and I think the test was covered after providing ICD-9 diagnosis codes... my mom might have also made some phonecalls to the insurance reps, but I think she was able to get it covered..

as for what testing to get from a monetary standpoint, I would personally recommend getting the Igenex test and not getting the Enterolab test... even if you are able to get the Igenex test covered, I would still recommend against the Enterolab test for your situation and just go with dietary response so that you can allocate that money elsewhere... I would save that money for supplements, other testing if needed, doctors' visits, and meds... even with some of this being covered by your insurance, you may still pay out of pocket a fair share, at the very least, for all supplements..

[Guest micah]

Wow thanks all so much! I think I have a place to start now. I really appreciate the advice.

Micah

[CarlaB]

Micah, please keep us posted!

Charlie, how are you doing these days?

[Canadian Karen]

Scott asked me to start a separate thread on Lyme Disease a few months ago, but I didn't because quite honestly, I was too sick. I could post, but I wasn't up to being creative enough to start a thread. After 6 months of treatment, I'm finally up to the task.

I get at least one PM per week from someone on this message board wanting to know more about Lyme Disease, so I thought it was time to have a place to post these questions ... not because I don't want to answer them, but because the questions are always the same ... so I thought more people could benefit from a thread whereas only one person is benefitting from a PM. (Still feel free to PM me about it if you prefer).

One thing I want to say up front is, there is no known connection between celiac disease and Lyme Disease.

So, why is it discussed here so much? One reason is that both diseases are common and underdiagnosed. They have similar symptoms, in fact, my LLMD (Lyme literate MD) tests everyone for celiac to rule it out in his differential diagnosis.

Another reason is that it is very common for someone with Lyme to also be gluten intolerant.

I know it's easiest for me to read posts that are broken up, so my next post will be a symptom list.

This was on our news yesterday, I thought it would be of interest:

Open Original Shared Link

[CarlaB]

Thank you for the article, Karen, it was very interesting.

Lyme Disease is also under-reported in the US. I contracted it 35 years ago in a "no risk" area. The doctor who tested me, even with a CDC positive test, still told me I did not have it and did not report it. I know of three other people who got Lyme in the same area I did! It's still listed as "no risk".

Columbia University just opened a Lyme research center ... hopefully, this will help the chronic form of the disease be more recognized.

[CarlaB]

I'm reading an article on Lyme and found this interesting. Open Original Shared Link

Since most antibiotics can only kill bacteria when they are dividing, a slow doubling time means less lethal exposure to antibiotics. Most bacteria are killed in 10-14 days of antibiotic. To get the same amount of lethal exposure during new cell wall formation of a Lyme spirochete, the antibiotic would have to be present 24 hours a day for 1 year and six months!

It explains the need for long-term abx treatment.

[dlp252]

I printed that article yesterday but haven't had a chance to read it yet!

All I can say is so far, lol!

[Guest micah]

I just read about a LLMD within driving distance and I'm hoping it is okay to ask you guys some questions you've probably heard before.

Here goes:

How do I tell if this isn't a scam? On his website he is selling an awful lot of supplements. I don't mean to be a skeptic, but I don't want to waste my money and don't want to be told I have lyme just because it makes money for someone.

Does anyone ever go to these doctors and get a negative result? I hope I don't offend anyone with my questions. I don't mean to sound negative, it's just that I do know of some scamming done to a friend of my sister's in the health field - a guy sold her a bunch of expensive "treatments" and she ended up spending her life savings and died anyway. It was really sad. Please tell me how you can tell the good guys from the bad ones....

Believe it or not, I found a tick on me a couple of months ago and I was in horror because now I know what they can do to you. I recently watched a bunch of kids go off to camp and one girl said, "Don't worry about the ticks, I can get 'em off of you, I pull tons of 'em off me every year at camp,"

Micah

[mftnchn]

Micah,

I think you are asking really good questions. Maybe Carla knows if there is a way to check with people on the lyme forum. That might be a place to start.

My doctor sells supplements as well, however, it isn't a bit advertising thing, its for the benefit of the patients. There are some of the supplements that are only sold through doctors, (like Thorne for instance) and some of these are better strengths or more allergy free or more reliable brands, etc.

It is possible that you could call and ask the office to help you understand what type of approach he takes and how he tests for lyme, and what other types of screenings that he does. Also perhaps ask what type of treatment approach he uses.

[chrissy]

i have not read through all of this thread, yet. i have/ had about 35-37 of the symptoms on the list (some of them seem to be repeats---just worded differently) i also remember a tick bite---but it was a LONG time ago. do any of you know of a doctor anywhere near me that would check for this? i live in southern idaho, far away from everything.

[CarlaB]

I think you are asking really good questions. Maybe Carla knows if there is a way to check with people on the lyme forum. That might be a place to start.

This is what I would suggest. Go to Open Original Shared Link and post under seeking doctors. Don't use the doctor's whole name, just say, "Has anyone heard of Dr. X in such and such a state."

You want to go to an ILADS doctor.

My doctor sells supplements as well, however, it isn't a bit advertising thing, its for the benefit of the patients. There are some of the supplements that are only sold through doctors, (like Thorne for instance) and some of these are better strengths or more allergy free or more reliable brands, etc.

Same with my LLMD. I buy the supplements through him for a couple reasons. One, they are pharmaceutical strenght and quality. Two, if he makes some money off the supplements, he will have it next time he needs to defend his medical license! Unfortunately, these guys are constantly under attack by the medical boards. Although doctors agree that tuberculosis is to be treated with long-term abx, they don't know how Lyme should be treated. You can read about the debate on Open Original Shared Link under FAQ's.

There are blood tests for Lyme. If you have Lyme specific bands come back on your Western Blot, there is only one place you could have gotten it, from being exposed to Lyme Disease. Exposure, does not necessarily mean illness ... but exposure plus symptoms plus response to treatment means you have it. So, it's not like some vague illness that they're treating you for ... this one can be quantified.

These are good questions, btw.

i have not read through all of this thread, yet. i have/ had about 35-37 of the symptoms on the list (some of them seem to be repeats---just worded differently) i also remember a tick bite---but it was a LONG time ago. do any of you know of a doctor anywhere near me that would check for this? i live in southern idaho, far away from everything.

My tick bites were about 35 years ago and I lived much of my life with minor symptoms.

Post on Open Original Shared Link under seeking doctors to find a doctor nearest you. Some of us have to travel ... I fly to NY to see mine.

[kevieb]

carla, i think it was about 35 years ago for me, too.

[dlp252]

I just wanted to add my .02 cents on the supplements thing. My doctor carries supplements in his office, both ones that he makes and some commercially available brands. I've never been given a sales pitch of any kind to buy HIS brands, or to even buy from him. He DOES have me on a bunch of supplements...some of which he carried and some of which he didn't. He mentioned that they had some of them there, but he left it up to me as to where I wanted to get them. I agree with Carla though, I do buy from him sometimes because for one it's convenient, and two he carries really good brands that are near pharmaceutical grade in strength and quality.

[Janeti]

I was wondering if anyone knows the symptoms of intestinal Candida. I am convinced that I have it after several months of tetracycline. Every so often, my mouth feels sore, I get waves of drowsiness, and my bathrooms habits are strange. Is this celiacs, the lymes, I never can figure out what from with so many things going on. I went to see my dr, he gave me a script for a ova & parasite stool test. Will this show if I have candida?? It seems every morning I wake up to new symptoms. This morning I woke up with very sore neck muscles, but in the front of my neck, whats this now??? I am so tired of the crummy way I feel, can anybody help me?

[CarlaB]

kevieb, so you have Lyme, too?

Janet, do you take probiotics? My stool test did not test for candida, but it did show some bacterial issues ... lots of the bad stuff and none of the good.

My LLMD has me on a strict no sugar, no yeast, no alcohol diet. I take Ultra Flora, Theralac, and VSL#3 for probiotics. I do not have a candida overgrowth.

Have you been tested for heavy metals? Many Lyme patients also have a heavy metal problem. I've been feeling a lot of improvement since getting the metals treated as well.

It does get complicated .... this type of chronic illness is definately not simple to treat ... it has lots of things adding to it -- I have heavy metals, gluten intolerance, bacterial dysbiosis of the GI tract, Lyme Disease and babesia!

BTW, I still have strange bathroom habits. I've narrowed it down to the amoxy ... the side effect of many of these abx is diarrhea ... my pharmacist had the attitude that he'd be surprised if I didn't have it! It's good to tell your doctor about it though, you want to be sure it's not a C.Diff. problem.

How long have you been being treated for Lyme?

I'd definately be on an anti-candida diet and taking probiotics. If you think you have candida, maybe your doctor will prescribe some Nystatin. I'm on it as a preventative ... it's a benign anti-fungal drug. The symptoms are similar to those of Lyme and celiac, so it will be hard to differentiate where they're coming from. Do you have vaginal yeast? Do you have a white tongue? Those are the things my LLMD is always asking about.

[Janeti]

Yes, I have had several vaginal yeast infections along the way. I didn't take any probiotics with the abx cause the label says not to if there are intestinal issues. Being that my gut had to heal from all the damage of celiacs, I thought maybe I shouldn't take it. I feel like everythings such a mess. For the past 2 days my stomach has been gurgling like crazy, not sure whats going on with it. Every day is a new adventure with my body, and I' not having fun I had sores in my mouth, I think that my ph is off. How do you know if the candida is beginning to clear up?

[mftnchn]

Janeti, I would agree about the concern for candida or yeast overgrowth. If you have been on tetracycline several months, with no attention to the yeast side it sure seems a definite possibility.

Can you handle yogurt? If so, that is a natural probiotic.

I have been on antifungals (lamisil mainly) all along with my antibiotics, and my doc says I need to be on it for 6 months after finishing antibiotics, so I really haven't been off it at all since 2000. This plus watching sugar, carbs, and probiotics seems to keep me from having too much trouble.

The other thing is that some antibiotics are harder on the good bacteria in the gut than others, so my doctors has tweaked my meds around with that in mind.

I totally concur about how confusing it all is, especially with there is overlap of symptoms between metal toxicity, candida, celiac, and lyme (and other autoimmune disorders, too).

My doc also treats me for metal toxicity, candida, and lyme. He is also adding a couple of other things since I discovered the gluten intolerance.

[Janeti]

Janeti, I would agree about the concern for candida or yeast overgrowth. If you have been on tetracycline several months, with no attention to the yeast side it sure seems a definite possibility.

Can you handle yogurt? If so, that is a natural probiotic.

I have been on antifungals (lamisil mainly) all along with my antibiotics, and my doc says I need to be on it for 6 months after finishing antibiotics, so I really haven't been off it at all since 2000. This plus watching sugar, carbs, and probiotics seems to keep me from having too much trouble.

The other thing is that some antibiotics are harder on the good bacteria in the gut than others, so my doctors has tweaked my meds around with that in mind.

I totally concur about how confusing it all is, especially with there is overlap of symptoms between metal toxicity, candida, celiac, and lyme (and other autoimmune disorders, too).

My doc also treats me for metal toxicity, candida, and lyme. He is also adding a couple of other things since I discovered the gluten intolerance.

First , I need to ask why have you been on abx for such a long time? I live on Long Island, and I think it is almost impossible to find a knowlegeable dr. I have hashimotos, along with several thyroid nodules. So the endo(who by the way is suppose to be the best around) doubled my synthroid because it was supposed to shrink them, sent me into hypertention. I feel like I can't trust any of them. I have started eating Activa, several months ago, I couldn't tolerate milk products, but now it's ok. I also ordered threelac. Have you heard of it? I feel like, I need to take care of me, with the help of this wonderful website When all my symptoms came crashing down on me, my stomach on fire(sure, just trying to get some toast down) and the rib pain, and not to be gross, but seeing all that I ate in the bowl(wasn't absorbing anything anymore). The GI dr did the endoscopy and said, yes your stomach is very inflamed. Ok, did I need him to tell me that????? So you are very lucky to have drs that are able to treat you. I just don't understand why there are good days, then suddenly crummy days. It kind of scares me, being that I have been so sick...I don't ever want to feel that way again, know what I mean? Janet

[mftnchn]

The issue has been getting on top of the lyme enough that my immune system can take over the fight. I suspect that the underlying celiac has complicated that process. For several years, each time I tried to get off antibiotics my symptoms would return right away. Finally I was able able work my way off abx after using cat's claw for a couple of years. However, about a month after going gluten-free this year, the lyme recurred.

Yes I have been blessed with good doctors.

I think each of us has to take our journey step by step, trying what seems best for us. I hope you find some answers.

[CarlaB]

I thought that probiotics were supposed to help stomach issues ... I know some people learn after taking them that they cannot tolerate them.

I take Theralac, Ultra Flora, and VSL#3. I have heard of Threelac, but don't know much about it.

As mentioned before, avoiding sugar and simple carbs is essential to treating candida.

LLMD's treat Lyme Disease with long-term abx, which is why we've been on them for a long time. I'm sure you heard of the guy with tuberculosis who flew on an airplane ... he's being treated for two years with abx for his tuberculosis.

Most doctors will not treat Lyme long term ... they say you just have to live with the effects of the disease ... I chose to see a guy who will treat me until I'm healed ... and I am getting significantly better under his care.

You can learn a lot about this from Open Original Shared Link. My LLMD is the president elect of ILADS and is north of NYC. He is VERY good ... I travel from Ohio to see him. He is an internal medicine doctor and is very comprehensive with his care.

[kevieb]

carla-----i guess the way i typed that made it sound like i know i have lyme. i have not been tested, but because i have so many unexplained symptoms that fit lyme disease, i'd really like to find a doctor that will test me without giving the whole story of how it is probably not likely that i have it because........i just want a doctor to humour me and run the test.

[CarlaB]

carla-----i guess the way i typed that made it sound like i know i have lyme. i have not been tested, but because i have so many unexplained symptoms that fit lyme disease, i'd really like to find a doctor that will test me without giving the whole story of how it is probably not likely that i have it because........i just want a doctor to humour me and run the test.

I completely understand! My doctor did humor me and run the test that I had the lab send directly to me. Even when it was positive, she told me I didnt have it.

I would find an llmd for testing. It can have a false negative or a low positive, like my daughter had. My daughter is responding to treatment though a non llmd would not have considered her history or her symptoms.

[Cruiser Bob]

Well, my blood went off to Igenex yesterday. $245 for W-Blot basic screening, plus blood draw.

The endoscopy/colo were inconclusive. He only noted that I have some monor irritation at the bottom of the esphogus. I don't have any respect for this GI Doc though - after his PA totally mixed up my medical conditions and they wouldn't fix my medical records.

My shoulder pain is Tendinosis = age/wear/tear. Interesting that the pain is so intense though. At least the Orthopedic was quite willing to see me through a Lyme test.

Now, I need to find a LLMD. (Donna??) I'm in South Lake Tahoe for now, but will be back in Oregon come October. I'll go over to Lyme.net and see what I can find too.

We'll see. I'd like to think we are eliminating the Lyme possibility Bob

[CarlaB]

YAY on getting the test done! I, too, hope you are merely ruling it out, but if you do have it, you do need an LLMD.

Keep us posted!