The Lyme Disease Thread

[CarlaB]

I'm glad you're in the process of getting answers. I'm sorry you're on Prednisone. If you do have Lyme, it drives it further into the tissue. I've never been on steroids, so I don't know how to answer that question.

I think it's a good idea to see someone while your in Maine. Many LLMD's will only make you come out there a few times a year and will work with phone consults. I have to fly to see mine. It is not unusual. I know there are even people who fly from Europe to see my LLMD.

There is no one in CO. There used to be, but he had to close his office as he was too ill to keep working.

Unfortunately, you will most likely get worse before you get better. Some people go on short-term disability while they start treatment so that they can get their job back later. I would suggest doing some preliminary work looking into that just in case since you're dependent on the Prednisone and you will have to get off it. Plus, we all feel worse when we start treatment, but then we get better. I am 90% functional today with about 2 days per month of feeling sick, but not as sick as I was before.

I would also suggest "Under Our Skin." I just watched it last night. Incredible. It explains it all ... the controversy in the medical field, how patients are overlooked, how sick we get, how sick treatment makes us, then the hope of how we will be once we get better. www.underourskin.com

Welcome to the thread. Please keep us posted on your lab results. Be sure to get a copy of them!

[susieg-1]

I'm waiting for my lab req from IgeneX and should get it Monday or Tuesday. I lived in Maine for the summer of 2004. I now live in western Colorado. I started having many of the symptoms listed for Lyme soon after getting here. It wasn't till the last 6 weeks that I have developed debilitating joint pain and was placed on prednisone. I now know prednisone is contraindicated, but what can I do till I receive my results? I tried to come off the steroid a few days ago which landed me in the emergency room. We have no LLMDs in our area. I already had planned a trip back to Maine(my home state) to visit family on 7/17/08. I have noticed several LLMDs in that area and thought I could schedule an appointment while in Maine. I would probably end up going to a closer LLMD down the road. I can almost say 99.99% I have Lyme, although I don't remember my tick bite. I can't afford to be off work too long. So how should I proceed? Any suggestions would be appreciated.

I NEED TO GET BETTER I FEEL LIKE I'M GOING TO DIE NEARLY EVERYDAY LATELY.

I am so sorry that you are going through so much pain. I have been there and remember times when getting into a car would be so painful that I would sit and just cry it out before being able to drive away. I can only offer this, avoiding all sugar seemed to help me with the joint pain, including no carbs, fruit at all.

[susieg-1]

Susie, Omnicef with probenecid (keeps it in the blood longer), or another one from that class of drugs.

That can be taken with a macrolide (zith and biaxin) because the macrolide goes after another form of the bacteria.

Plus, Plaquenil, which makes the macrolide work better and goes after the cyst (dormant) form.

I would recommend printing out Dr. B's guidelines because it has a comprehensive list of what meds are good. The above is just an example of how my own treatment has gone.

Lyme is resistant, needs combinations of various abx, and the abx combos need to be changed around. You might want to keep seeing your PCP, but also see an LLMD every few months so that you have someone with experience helping with your case.

Your PCP might also be willing to join ILADS and learn so much more about treating Lyme.

You might want to get a copy of Under Our Skin (www.underourskin.com). It's REALLY good. In the movie they show a doctor saying a woman's gut problems are due to the Lyme weakening her immune system and parasites taking over in her intestines because of the weakened state of the immune system. That rang a few bells for me .... I have seen expelled parasites as I have gotten better. Ewww. Gluten problems are talked about on Lymenet quite frequently.

Carla,

Right now I am taking erythromycin with doxxy, I know it may not help with lyme but there may be other infections I have developed along with lyme that erythro may target. My Dr intended for me to switch from doxxy because of constipation issues but I am taking them together, 1000 mg of erythro and 400 mg doxxy.

I printed Dr B's 33 page guidelines to take to my PCP today along with ILADS guidelines. I will probably be calling LLMD back soon for another appt as I now know my PCP will work with him regarding my treatment. I just have to wait as my fiance needs to take a month off to have 3 hernias repaired and I don't want him to put it off any longer and don't want him stressing over finances.

I am feeling good right now so am taking it one day at a time.

I tell everyone I have Lyme and everyone has the same response "How did you get that?" Local awareness is obviously poor!

Glad you continue to help others through this forum as I never would have suspected Lyme if not for you!! Thank you!

[susieg-1]

Susie, Omnicef with probenecid (keeps it in the blood longer), or another one from that class of drugs.

That can be taken with a macrolide (zith and biaxin) because the macrolide goes after another form of the bacteria.

Plus, Plaquenil, which makes the macrolide work better and goes after the cyst (dormant) form.

I would recommend printing out Dr. B's guidelines because it has a comprehensive list of what meds are good. The above is just an example of how my own treatment has gone.

Lyme is resistant, needs combinations of various abx, and the abx combos need to be changed around. You might want to keep seeing your PCP, but also see an LLMD every few months so that you have someone with experience helping with your case.

Your PCP might also be willing to join ILADS and learn so much more about treating Lyme.

You might want to get a copy of Under Our Skin (www.underourskin.com). It's REALLY good. In the movie they show a doctor saying a woman's gut problems are due to the Lyme weakening her immune system and parasites taking over in her intestines because of the weakened state of the immune system. That rang a few bells for me .... I have seen expelled parasites as I have gotten better. Ewww. Gluten problems are talked about on Lymenet quite frequently.

I wonder if I should do another round of Humaworm? I have thought about it over the past few days and wonder if it is a good idea. I have also seen what I thought may be expelled parasites double Eww!

[CarlaB]

Susie, I'm glad you're feeling good. Doxy is a good drug, so I can see why you are putting off the LLMD until your fiance has surgery. Don't stress over the surgery, he'll do fine and feel better when he's done. Both of my boys had hernia operations when they were babies.

I did two rounds of Humaworm. I see parasites from the Enula as well. Take something like chlorella if you take something for parasites. Parasites can release toxins.

[Rachel--24]

I now know prednisone is contraindicated, but what can I do till I receive my results? I tried to come off the steroid a few days ago which landed me in the emergency room.

Did you try to go off of it cold turkey?? I think with prednisone you have to taper off slowly. I was on it for a very short time....only one week....but I still had to taper off of it.

[souzahanson]

I desperately need a LLMD in or near Colorado. I've reached out on a lyme specific forum with no return posts.

Can anyone help me out

[CarlaB]

Did you post on Lymenet? Someone there should be able to help you.

There used to be an LLMD in CO but he had to retire due to his health.

[susieg-1]

Susie, I'm glad you're feeling good. Doxy is a good drug, so I can see why you are putting off the LLMD until your fiance has surgery. Don't stress over the surgery, he'll do fine and feel better when he's done. Both of my boys had hernia operations when they were babies.

I did two rounds of Humaworm. I see parasites from the Enula as well. Take something like chlorella if you take something for parasites. Parasites can release toxins.

Carla,

I am feeling better everyday now, Is it possible to have Herx every couple of days? I will have most of the day pain free with brain working well then experience some inflamation and some other symptom like jaw pain for a couple of hours then feel good again. Some days I will have mild cold symptoms that don't last, or a short stint of irratability, or skin eruption. I think these episodes are from die-off of lyme bacteria, but not like what I read a true herx to be.

Thanks for the encouragement re: hernia. At least comp will pick up costs and provide some financial compensation but not the amount that we are used to with a regular paycheck. I am currently working on cutting monthly expenses by calling vendors to try to get reduced rates on things like sattelite and internet services and will be consolidating car and homeowners insurances for reductions.

I actually have another job interview for a part-time office manager for a code enforcement officer at a small township on Monday. The last part-time job I did not keep as the boss was a little too "out there" for me. Hope this works out as I could use a distraction and of course extra cash would be great, plus with fiance home after surgery I won't need child care for the rest of the summer.

I am still very interested in starting my own home based gluten-free baking business but do not want to take on this much stress right now as my focus needs to be improving my health. It is a hard decision as this is the season to start such a business in my area.

Is there any issue with taking Humaworm with doxxy? What is the reason for chlorella? Detox?

I hope all is well with you and your family and hope someday to meet in person. I had the pleasure of meeting truthseeker a few weeks ago and feel I have a new friend for life now

[CarlaB]

I hope we can meet, too. I don't remember where you are in NY, but I will be in Hyde Park on Aug. 12

I took Humaworm with abx ... not at the same time of day, but when I was taking them. I have never heard of a interaction.

Chlorella is for detox.

I would say your symptoms are just still coming and going. I had that for several months, then I would have a major flare up every 24 days. I'm glad you're continuing to improve. YAY!

I hope you get that job and that it's a good one.

[Morejoy123]

Hi Everyone,

I'm new to this forum, but this topic is *exactly* what I need. I'd like to know for those who have a tick-borne disease and celiac as well how common it is to have numerous food intolerances? And what is causing it and does it get better?? And what kind of doc are you using that is good with dealing with the whole big picture??

See conclusion at end: I don't know if I have had chronic Babesiosis all this time or is it caused by the Celiac or...??? I'm about to lose my mind trying to figure this out, and I think my very good MD/homeopath doc is as well. He was shocked when I was just in to see him and very ill again with additional food intolerances as well.

I've not been diagnosed with celiac but I can't eat wheat or gluten, and my sister was just diagnosed with celiac (She had no gastro symptoms but was about to be diagnosed with MS when they figured it out finally.) I don't have gastro symptoms either when I eat wheat/gluten. I get all-over body pain and fatigue. I just received my genetic results for Celiac from Prometheus. I don't think my primary care doc knows how to interpret this, she just sent me the results in the mail with no phone call. Antibodies okay, not a surprise, but Genotype is High risk. My sis was just diagnosed with celiac which led me to do this testing. My son's gastro doc is having him tested, so that' how I knew to use Prometheus. His comment was that if you are not on gluten-containing diet but have genotype, he would diagnose celiac.

Try to make a long story short:

Became very ill about 5-6 years ago with all-over body pain. Sudden onset (like a fleet of trucks, couldn't move, walk or do anything without excruciating pain) at the end of physical therapy for a neck issue. I had been doing great and problem was just about resolved. I had muscle pain, fatigue, and brain fog for about 2 years. The pain was so bad that I was in pain 24/7 although I took pain meds. I was diagnosed with fibromyalgia and told by doc and specialist there was nothing they could do.

The pain worsened and I didn't want to go with heavy duty opiates, so I put out a call through a local group newsletter for a pain specialist. Could only find those who dealt with cancer. Acquaintance called with info on an M.D./homeopath doctor who had helped her with long term difficult issue. I went and he found all kinds of stuff that we worked on for a year or two. The first to treat was babesiosis (a tick-borne disease often found with Lyme). At that time I didn't even know what a big deal it was. He also worked to get the metals out of my body, get my adrenal system working again, Epstein-Barr, etc. And he diagnosed intolerance to wheat, gluten, corn and some other things. At the beginning of treatment, I could actually feel the pain leaving my body and after about a month I was pain free but still very fatigued.

At that point I wasn't well-read on Celiac, it didn't enter my mind. I just followed the diet. Finally last summer I started feeling like a real person again with a decent level of energy. But come about November I was hit with one serious illness after another: H-Pylori and parasites which caused gastro bleeding and bleeding ulcer, flu, whooping cough... Sick about 6 months overall. It was crazy. Then in January my food intolerances also went crazy. The major additions to no wheat/gluten/corn/pork/and more were dairy/soy/eggs/yeast/vinegar/tomato/chocolate but the list was much longer.

We thought things would settle down after my body had time to recover, so we scheduled a six-month check, and I stayed on the "I can't eat anything diet" very faithfully. I lost a full clothes size of weight. In midJune of this year, I started to again experience unexplained muscle pain. Went to doc about 3 weeks later (4 weeks ago), and I have babesiosis again (!) and even more food intolerances--major ones are beef/potato.

So I was supposed to be getting better, but I'm much worse. I'm one week into the abx and supplements for the babesiosis and new diet (plus herxing all week). But my head is spinning. I can eat so few things now that it's unbelievable. And I don't know what to think. Did I have under-the-radar babesiosis all this time that harmed my immune system? It can be in so few red cells that it is not detected. Or is it caused by Celiac? Or both or something else?

Any comments, suggestions, ideas are very welcome. The money we spend for my health and special food is a killer--we have no insurance. So I don't want to run here and there to this doc and that if I can avoid it. I'm waiting to hear about a possible LLMD in my area, but I'm VERY interested to hear what kind of docs you have found that may do the best job at understanding and dealing with the whole picture. Having my doc who has helped me so much look amazed and want to send me to a sleep clinic was not a good thing. Although he was able to diagnose and treat my babesiosis, which was a huge blessing, he is not an LLMD. I just got the book on Babesios by Dr. Schaller (an LLMD), and I'm not sure that we continued treatment for it long enough... ...

This is really long. Thanks for reading. I'll stop there.

Carol

[dlp252]

Hi Carol! Welcome...saw your post over at OMG and came looking for this one, lol. I don't know if I can answer all your questions, but I can address some of them.

I'm new to this forum, but this topic is *exactly* what I need. I'd like to know for those who have a tick-borne disease and celiac as well how common it is to have numerous food intolerances? And what is causing it and does it get better?? And what kind of doc are you using that is good with dealing with the whole big picture??

I think it's pretty common to have numerous intolerances. I personally don't think the lyme directly causes that, but I do think that it does affect other body systems that allow it to happen. I've several people both who've addressed the lyme aggressively and those who haven't who have seen an improvement in the intolerances. I have seen some improvement even though I haven't taken aggressive treatment for lyme. I've been using herbal stuff only so far. In my case I think I relieved enough of the strain on the body systems for my body to start doing what it should. I still can't eat gluten or casein, but some of the other things have cleared up.

I felt like I was going around in circles until I started seeing a lyme literate medical doctor (LLMD). He tested me for all kinds of things including mold toxicity, heavy metals, lyme, essential elements, etc. He is the first doctor who really took EVERYTHING into account in forming a plan for me.

So I was supposed to be getting better, but I'm much worse. I'm one week into the abx and supplements for the babesiosis and new diet (plus herxing all week). But my head is spinning. I can eat so few things now that it's unbelievable. And I don't know what to think. Did I have under-the-radar babesiosis all this time that harmed my immune system? It can be in so few red cells that it is not detected. Or is it caused by Celiac? Or both or something else?

It's probably both. How was he testing for babs? Do you know what lab they used or was it muscle testing?

I'm waiting to hear about a possible LLMD in my area, but I'm VERY interested to hear what kind of docs you have found that may do the best job at understanding and dealing with the whole picture. Having my doc who has helped me so much look amazed and want to send me to a sleep clinic was not a good thing. Although he was able to diagnose and treat my babesiosis, which was a huge blessing, he is not an LLMD. I just got the book on Babesios by Dr. Schaller (an LLMD), and I'm not sure that we continued treatment for it long enough... ...

Yes, that's one of the problems with most doctors who are not LLMD...they don't treat long enough. In addition to my LLMD I also see an integrated medical team consisting of physical therapist, internist, chiropractor and nutritionist and a more alternative practitioner. I've also had muscle testing done (A.R.T.) which seems to be the most accurate so far...it was what first found the lyme, which was later confirmed via blood testing by my LLMD.

[Morejoy123]

Hi Donna,

I think it's pretty common to have numerous intolerances. snip

I still can't eat gluten or casein, but some of the other things have cleared up.

When I first found this doctor I had been very ill for two years. Lived in pain even with pain meds, unable to do anything physical, only left the house once a week, which I paid for dearly. My doc and specialist said that was it, that was my life. But this doc figured it all out. He found numerous food intolerances but some did clear up as he treated me. Gluten, wheat, and corn were keepers. Then last year I was sick nonstop with so much and the food intolerances went crazy again. Sigh.

I felt like I was going around in circles until I started seeing a lyme literate medical doctor (LLMD). He tested me for all kinds of things including mold toxicity, heavy metals, lyme, essential elements, etc. He is the first doctor who really took EVERYTHING into account in forming a plan for me.

You know that is what this doc has done for me. And I do really really appreciate it. It was like peeling an onion. He took care of the metals, pesticides, adrenal issue, etc. I was a mess. It's just that I've never gotten my energy back and every time I'm on the threshold of health I get really sick again.

Until today I thought an LLMD was going to be a magic pill I guess. I actually saw him today because I've developed an insanely itchy rash. I discussed my other concerns with him, found out he IS an LLMD. Nothing like keeping that very quiet--but I understand why. I gave him the book that just came out on Babesia in which Dr. Schaller gathered the top 4 protocols and the latest info all in one spot, and some other stuff. He knew everything I asked him about. had great answers to my questions. Seems very up on it all. And it's pretty fantastic that he is immediately willing to check out this new book. I'm always amazed how humble he is. But he is not educational by nature, so I just didn't know that he did all of this. And I'm so tired of being tired and sick. Sigh.

It's probably both. How was he testing for babs? Do you know what lab they used or was it muscle testing?

He uses a special diagnostic machine called an MSA, sorry forget what that stands for. I know many would not like that, but it is amazing what this machine does. He has found that the machine is as good and even better than the current blood testing. The best part is that with the machine you are testing for everything--food intolerances, systems health, metals, etc., and every bacteria, protozoa, parasite, etc. all with one testing session. He treated the babs for 4 weeks and stopped when the machine indicated it was gone. And I have been pain-free until now. He agreed that babs could be like malaria and hide and then cause a relapse but we just don't know yet if it does that. Meanwhile he said since I was pain-free it definitely wasn't active and so not the cause of tiredness and other stuff.

He also tests for all the co-infections. Has dealt with my parasites, etc. So I don't know. I go back in 2 weeks to see how the current treatment is doing against Babs this time. So we'll talk more then. Once the Babs is gone I'd just really like to find an answer for the energy issue and getting sick with everything!!! He had said 2 weeks ago that after all we've done I should be better and since I don't sleep well he wanted to send me to a sleep clinic.

So I have Celiac just confirmed through genetic testing, massive numbers of food intolerances, the Babs and lots of pain right now, I get sick constantly, and on the side I have hormone issues that I was holding off dealing with. I guess I was hoping for one solid cause that could be FIXED. I didn't want to run to a sleep clinic, get hornome testing, and do all these bits and pieces of this and that if there was one underlying cause.

Today I'm thinking perhaps I just need to accept that I'm not healthy but be glad for the health I have and keep doing the best I can. Yes? Sigh. I'm tired of not being able to go and do with friends and not being able to go out in the evening. It starts feeling quite isolating. Usually I stay very upbeat, after all I could still be sitting on the couch all day, but I guess it's getting to me.

Carol

j

[mftnchn]

Just curious, how your celiac was confirmed through genetics (I think it is only a genetic predisposition--that you "could" have celiac)..

Regarding sleep, I am not sure I would go to a sleep clinic. My sleep issues have been hormonal and metabolic, and maybe infection related. If you are celiac, you could have some profound imbalances/deficiencies, all that can cause symptoms.

Both lyme and celiac can be profoundly upsetting to the body systems, and it just takes time and a very good doctor to help you back to health.

Sherry

[CarlaB]

Hi Carol,

So your LLMD thinks you have babesia but not Lyme? I believe most who have babs also have Lyme .... I don't know the statistics to quote you though.

I have been on babs treatment for 18 months straight, and though I feel much better, I still have symptoms so am still treating. Yes, it could be babs all this time, and I would suspect Lyme as well.

Lyme weakens the immune system. A healthy person who gets babs and not Lyme would heal, but the Lyme makes it so you can't fight off the babs, thus it becomes chronic.

Also, with the Lyme weakening the immune system, it enables you to have all kinds of GI issues as your body can't fight off the bacteria/parasites/etc. I was severely sensitive to gluten in the beginning, and in fact, though that was the only food that made me sick in minute amounts, eating anything would make me feel sick (I lived on smoothies).

As I have been healing, all my GI issues have resolved including my gluten intolerance. I did not have a celiac gene and did not test positive for celiac disease.

How do you know your doctor is an LLMD? Not all LLMD's are equal ... you might post on LN under seeking doctors and ask something like, "Dr. X in OH" Then ask if anyone knows anything about him.

Unfortunately, there is no magic bullet for Lyme, but a good LLMD can help you restore your health. I started out mostly bedridden (about 15% of normal) and am about 90% most of the time today.

[Morejoy123]

Just curious, how your celiac was confirmed through genetics (I think it is only a genetic predisposition--that you "could" have celiac)..

I could have phrased that better. The reason why the genetic disposition is confirmation for me is that I'm gluten intolerant and I have the gene, so the assumption is that I have celiac. I cannot go back on gluten to test any other way.

Both lyme and celiac can be profoundly upsetting to the body systems, and it just takes time and a very good doctor to help you back to health.

Right. I do understand that. I've been "getting better" for several years now. But I just can't "get there." This past year I ended up being seriously ill for months, one thing after another. Now I have babs again!! I feel like I'm clear back at square one.

I guess I was hoping for a magic answer that's not going to be there.

Carol

[Morejoy123]

Lyme weakens the immune system. A healthy person who gets babs and not Lyme would heal, but the Lyme makes it so you can't fight off the babs, thus it becomes chronic.

Also, with the Lyme weakening the immune system, it enables you to have all kinds of GI issues as your body can't fight off the bacteria/parasites/etc. I was severely sensitive to gluten in the beginning, and in fact, though that was the only food that made me sick in minute amounts, eating anything would make me feel sick (I lived on smoothies).

Carla,

I don't know very much about Lyme because I focused my reading on Babs. This is a very interesting comment *because!!* that is exactly what got me so sick last year. It started with a horrible bacteria similar to EColi--it devastated my entire digestive tract. Then I got parasites, then H-Pylor, then a bleeding ulcer. Of course at that point I had probably had about zero immune system and even though I had a flu shot I ended up with the flu and then whooping cough which was going around over here. I thought I'd never get better.

My doctor is an LLMD because he says he is. Which fact I didn't know until this week when I went in with all my print outs and new Babs book and questions. I have to say that if it wasn't for him I would never have gotten off the couch and would be on serious pain med by now. It got so bad I couldn't take it any longer with just Tramadol. He's done a phenomenal job of treating my whole health.

I was frustrated after my last visit--and I've probably said this--because he said after all we've done, I should be better than I am. That's when he started talking sleep clinic.

I think I'll start talking Lyme. I see him in 2 weeks. I'll see if he is willing to consider that possibility even though it is not showing up. If not, I'll definitely find a different doc. If so, I'll probably stick it out with him, but I need to think that through.

Meanwhile, I had to take a med break on the Babs med due to an allergic reaction to something, so I hope it's not too bad when I go back on them. I already had my week of herxing.

Carol

[CarlaB]

Hi Carol,

Just wanted to check in to see how your appt went and how you're doing.

[Morejoy123]

Hi Carla,

Thank you so much for thinking of me. I've read and read about Lyme since last posting.

Thank you for your comment about all LLMD's not being equal. It may have been clear to you when I posted, but it's now clear to me that my M.D./alternative doc may call himself an LLMD, but he is not. He is not at all up on the latest research.

I did keep the appointment anyway as my goal was to leave with a prescription to get started on doxy. He had me on zith for the last month and it didn't help at all and, in addition to the daily itching, now that I'm off of it, I can see other problems gone that it was causing. I wanted to do something helpful the next month. I found a true LLMD--after lots more research-- but my appointment is not till end of August.

By the time I went to the appointment, after enormous amounts of reading, it was very clear to me that I have Lyme in addition to Babs and whatever. Amazingly his machine showed it also for the first time ever, so he did give me a doxy script.

He wanted me to take only 100mg BID, but all the literature says 200 mg BID. I asked him if I could. He said all but two of his patients got sick on the higher dose, but if that was what I wanted it was okay with him. So I'm working up to it. Started with 200mg/day last Friday. Today added a third pill, total 300mg/day. So far so good--it was this a.m. that I took the 200.

Meanwhile, a week ago I took my IGenex kit to my regular doc, and asked her if she would okay the testing. I should have results back on 4 comprehensive panels in a couple days. I know there's lots of false negatives, but I just had to try before all the abx kicked in.

So I've been very busy, and, unfortunately, having more bad days than good. My latest step is to schedule an appointment with a chiropractic doctor who does naturopath, homeopath, BioMeridian... I have two good friends who have seen him for quite some time. The price is reasonable, and I'd like the help with whole body, immune support, and gastro issues/food intolerances!! I see him next Monday.

So my LLMD is Dr. S in Hermitage. If you have any comments on that, they are welcome. I tried to find tons of info before choosing. I considered Dr. H in Hyde Park and several good docs by Philly. Dr. S has 20 years of experience, is involved with ILADS, uses conventional and alternative..., so since he is closest to me, the choice was made. It's probably a 4-hour drive, but the others I'd have to fly.

Thanks again,

Carol

[CarlaB]

It's good to hear from you, and I'm glad you pushed for the higher dose. Of course his patients felt worse on the higher dose ... it's killing the Lyme and causing a herx!

I don't know much about the docs in PA .... I fly to NY as you know. If you post under seeking doctors at LN you can ask if anyone there knows and can PM you. All docs have positive and negative comments, so you might as well go see for yourself.

Keep in touch!

[Stevs]

Hi, there. My name is Steve. I have many of the symptoms listed and was wondering where can I go to get thet testing from the LLMD to be tested for lyme, celiac and possibly the mold to? What is the cost of these tests? Does the insurance cover this?

Thanks, been sick to long.

Steve

[Morejoy123]

Hi Steve,

I'm new to this form as well. That would be a lot of testing to get all at once.

For Celia, I would go to the Main Forum and choose "Pre-Diagnosis, Testing, & Symptoms" and post there. There is also a thread on Doctors.

For Lyme, here is info from the front page of lymeinfo.net

Great Lyme Disease Links:

The following items will take you offsite. The first link is a must read introduction to Lyme disease diagnosis, treatment and prevention. It also provides information on babesiosis, ehrlichiosis, bartonella and rocky mountain spotted fever. The next 2 links are from a professional medical organization, the International Lyme and Associated Diseases Society.

Lyme Disease and associated tick-borne diseases: The Basics

ILADS Lyme Disease Basic Information

ILADS Lyme Disease Medical Guidelines

For more info and help on doctors, see Lame Advertisement

And, mold, I don't know anything at all about.

Carol

[CarlaB]

Hi Steve,

Sorry, I didn't see this post.

If you go to Lame Advertisement and post under seeking doctors, someone can send you the number to an LLMD. A good LLMD will do lots of testing for a differential diagnosis. Mine actually routinely tests for celiac disease. Nonetheless, if you go to one who doesn't, you can always ask him to do that testing.

I wasn't tested for mold, but I know others who have been.

Good luck, keep us posted, okay?

[dlp252]

Sorry, I didn't see this post either...just had foot surgery and have been sporadically on the boards.

My LLMD did a BUNCH of testing. He drew 7 vials of blood, and in addition to the lyme testing, did test for mold, tested my essential elements and metals, among a host of other things. I good LLMD will do the differential diagnosis as Carla mentioned. Mine wanted to rule out a bunch of stuff so he tested for a bunch of stuff. Unfortunately, I had all of it, lol. I was lucky to have a doctor referred from someone I knew on the boards, but the folks on lymnet will be able to give you one in or close to your location.

The initial appointment with my LLMD was fairly expensive, but he spent a LOT of time with me, and actually LISTENED to ALL of my symptoms instead of cutting me off like most doctors do (I think the appointment lasted between 1 and 1.5 hours!). Just the office visit was around $350 (some LLMDs are more), and the main followup appointment (to get results) was around $150. Office visits after that around $100 I think. The testing was probably an additional $400 (altogether). The western blots were around $200 for me, and the other tests combined were another $200 or so. Some of that testing was paid for by my insurance. I think the western blots were covered 100% by my insurance, and some of the other bloodwork was as well.

Most LLMDs are not "in network" so you would have to pay up front, and then submit a bill to your insurance company if you choose to do so. I submit mine because my insurance will cover 70% of out of network office visits. Some people don't want to submit these bills for various reasons.

[dreamingthought]

thank you so much for posting this topic. The information I found here lead me to ask my arthritis doc to test me for lyme.

I was diagnosed 2 days ago. I would have never suspected it because I never got a rash, never saw a tick, haven't been in the mountains recently, and live in a low risk area.

here are the symptoms I had:

Headaches - migranes 20

Twitching of facial or other muscles

Facial paralysis (Bell's Palsy) - age 23

Stiff or painful neck - age 26 and 28

Jaw pain or stiffness - now

Sore throat, clearing throat a lot, phlegm ( flem ), hoarseness, runny nose - chronically since age 23

Ringing in one or both ears - for a brief period a month or two ago

Constipation - for years now

Upset stomach (nausea or pain) - for years

Stiffness of joints, back, neck, tennis elbow - flair up at age 20, age 26 and now, age 28... the worst so far

Muscle pain or cramps, (Fibromyalgia) - now

Shortness of breath, can't get full/satisfying breath, cough

Chest pain or rib soreness - recently

Night sweats or unexplained chills - many times over the years

Heart palpitations or extra beats - always felt like I did, never had it checked though

Fatigue, Chronic Fatigue Syndrome - always fatigued

Mood swings, irritability, bi-polar disorder - yup

Panic attacks, anxiety

Memory loss (short or long term) - on occasson

Confusion, difficulty in thinking

Difficulty with concentration or reading

Extreme fatigue

Swollen glands/lymph nodes

Continual infections (sinus, kidney, eye, etc.) - sinus and throat

Symptoms seem to change, come and go

Pain migrates (moves) to different body parts

Early on, experienced a "flu-like" illness, after which you have not since felt well.

Increased effect from alcohol and possible worse hangover

that's 29 of the symtoms....