The Lyme Disease Thread

[AndreaB]

Hi Bob! I didn't realize you had so many limitations as you haven't posted that on the OMG thread.

I don't have lyme but I hope you guys don't mind if I hang around.

[Mtndog]

Hi Bob- Welcome! I had "tennis elbow" (uhm? I don't play tennis) so badly i couldn't use JUST my right hand to hold anything even remotely heavy (like a skillet). It started in january and strangely enough....first thing to just COMPLETELY disappear since I started the abx.

Good luck with the testing!

Andrea- You can hang around but NO LYME FOR YOU!

[CarlaB]

Andrea, you are our cheerleader! How could we get through a herx or even a blood test without you? Or remember our doctor appts????

Bob, be sure that if you get tested for Lyme that your doctor uses IGeneX. Don't be surprised if your doctor brushes off the idea ... but insist on it! I also didn't know you were having unresolved issues ... I hope you get to the bottom of them soon.

Most of my joint pains have also disappeared early in treatment. It's only when I'm herxing that I have them now.

[CarlaB]

Thanks for your story, Bev!

Okay, I'll post about treatment ...

I found out that a friend of mine had just been diagnosed, so I called and asked her who she was seeing for treatment. It's a doctor in NY ... I actually made the appt. before I got my test results back.

I got my test results back and my doctor here told me I didn't have it even though the test was positive.

I finally got to see Dr. H on Jan. 20th. He asks how I'm doing on a % scale -- 0 being dead, 100 being perfect. I told him I was 15%.

He also diagnosed me with babesia because of the night sweats, heart palpitations, and air hunger.

I started on anti-protozoals for the babs and abx for the borrelia (Lyme). Immediately I started feeling about 20-25%. About every 24 days I have a herx ... in the beginning the herxing wasn't much different from "normal" bad ... but now I notice a significant difference.

My first herxes left me unable to walk without assistance. Sometimes even the Lyme would cause that, too.

One of the scariest times for me was when I went to the grocery and got so disoriented that I had to call my husband on my cell phone ... he told me to buy what was on my list, check out, and go home ... yes, I needed those simple instructions. That happened right before treatment, and from then on until I was a couple months into treatment I never left the house alone.

Borrelia exists in three forms, spirochete, cell-wall deficient, and cyst. My LLMD treats all three forms at once ... not all LLMD's do it this way.

A big concern is fungus/mold. It's very easy to get an overgrowth of yeast being on so many meds for so long. I take Nystatin to prevent problems and keep to a sugar/yeast/alcohol-free diet.

My LLMD is holistic ... he says if he could treat Lyme naturally, he would. He does have an herbal protocol, but he said I would need to get my bacterial load lowered before it would be effective for me.

He has me on a lot of supplements for various things -- probiotics to keep up the good bacteria in my GI tract, immune-building herbs, vitamins, minerals.

Right now I am also chelating heavy metals. It's very common for a Lyme patient to be heavy metal toxic. I'm on a gentle protocol because my metal load was low since I've been through this before. I am feeling better since starting this treatment.

I also recently found out that my bacterial balance in my intestines is off -- lots of bad bacteria and NONE of some of the good stuff. This is most likely what has been causing my GI problems for the past four years. My doc changed one of my abx temporarily to take care of this problem and has me on VSL#3, a VERY strong probiotic.

I do many things to aid in detoxing. I have a far-infrared sauna that I use about 5 times per week. I also do coffee enemas (yeah, gross, but Google them, they've made a HUGE difference!!!). I drink lemon or lime squeezed into water ... and I drink a lot of water. I've recently started taking undenatured whey several times per day. All these things have helped me.

Other things I'm doing to heal is exercise, plenty of rest, and eating right. Dr. B's guidelines say exercise is essential to healing from Lyme. It's important in the beginning when the stamina is low to do strength training rather than cardio. I lift weights. I recently added 20 minutes of cardio IF I'm up to it that day. I go to the gym whether I "feel" like it or not ... I actually never feel like it!

I have blood work done monthly to be sure that all my levels, including liver enzymes, are within range.

Last month I told my doctor I was 70% and this month, I'll say 75%. I'm about 60% today, and I'm just getting to the last part of my herx.

[mftnchn]

Great to see you all here and read your stories. Andrea, we NEED a cheerleader!

One more thing about lyme as I understand it: There are various strains of borrelia and the other co-infections. This could explain the variation in symptoms. At least one of the co-infections is a protozoan I believe. So "lyme disease" may refer to a cluster of illnesses caused by a group of infections.

I don't seem to have much predictability to when I herx, except a few times a major one a month after starting something different. It does follow the meds though. (Like when taking penicillin shots early on, flu like symptoms the second third and fourth day after the shot). Now it follows the pulsing of the Flagyl I take.

[Cruiser Bob]

Hi Bob- Welcome! I had "tennis elbow" (uhm? I don't play tennis) so badly i couldn't use JUST my right hand to hold anything even remotely heavy (like a skillet). It started in january and strangely enough....first thing to just COMPLETELY disappear since I started the abx.

Good luck with the testing!

Andrea- You can hang around but NO LYME FOR YOU!

I'm surviving right now with the TENS machine, Requip, Halcion & Ambien. Just waiting about a week for GI & MRI results, then I'll move on to the next step, whatever that might be. At least the scopes showed that my insides "look" good for 45. My buddy of 20+ years and I were talking the other day - we figured I'm at about 70% (maybe) of what the "normal" me functions like. It just plain old sucks no matter how you slice it, except I eat like a pig and stay skinny . Bob

[CarlaB]

I know what you're saying ... my teenage daughter and hubby have to be crazy with me eating all the time (with no appetite, it's just because I need to take meds and they force feed me), while they both have to watch their weight.

I think it's good that you are on the ball enough that you've "only" gotten down to 70% ... I know it seems low ... that's about where I am, and it's frustrating. Once you figure out what it is, I bet you'll rebound fast.

I'm 44 ... it would be easy to blame 70% on age ... but I KNOW better.

What's a TENS machine?

[Cruiser Bob]

I just figured out the Avatar stuff too - that's me.

TENS = Transcutaneous Electrical Nerve Stimulator, or electric current to mask the pain sensors. It's a $39 machine, but the pads are expensive. For now, I can actually sit at the computer and/or drive without too much pain sensation it's only a short term mask and way better than taking more drugs.

Bob

[Guest micah]

You are very welcome. Are you diagnosed with celiac or just considering that possibility?

I am just considering the possibility...after 9 years of being very sick and getting absolutely no help from doctors, I'm striking out on my own to find out how to get better. So far I've found quite a bit of improvement from going gluten and egg free for about 3 weeks. Still hoping for more improvement though.

Thanks for the info on this thread Carla.

Micah

[mftnchn]

Bob, that's a great pix. Bob and Carla--70% is pretty good, and that's a great shift from 15% Carla. It took me a lot longer those first months of treatment. I think I am 50-70% this past two weeks. Was 30-50% for most of June. ABX are really helping.

Micah, I am glad the diet helps. Have you been strict gluten free?

I am trying to tease out for myself what is celiac and what is lyme related, or something else. Seems like it is a lot of guess and trial and error.

Here's just a couple more thoughts:

I'd be sure you are totally gluten free because some celiacs so super sensitive to the most minute amount even cross contamination and in personal care products. Sometimes more symptoms clear when you are strict enough.

Then there can be other food sensitivities. My allergist said the grains are the most notorious for cross-reacting. So you could try a week or two grain free and see what happens. Dietary trial is far more accurate than blood, stool, skin testing.

The other thing is that a lot of us have candida problems, so cutting sugar and taking probiotics could help.

Keep us posted!

[little d]

I have sixteen symptoms listed

donna

[Guest micah]

Bob, that's a great pix. Bob and Carla--70% is pretty good, and that's a great shift from 15% Carla. It took me a lot longer those first months of treatment. I think I am 50-70% this past two weeks. Was 30-50% for most of June. ABX are really helping.

Micah, I am glad the diet helps. Have you been strict gluten free?

I am trying to tease out for myself what is celiac and what is lyme related, or something else. Seems like it is a lot of guess and trial and error.

Here's just a couple more thoughts:

I'd be sure you are totally gluten free because some celiacs so super sensitive to the most minute amount even cross contamination and in personal care products. Sometimes more symptoms clear when you are strict enough.

Then there can be other food sensitivities. My allergist said the grains are the most notorious for cross-reacting. So you could try a week or two grain free and see what happens. Dietary trial is far more accurate than blood, stool, skin testing.

The other thing is that a lot of us have candida problems, so cutting sugar and taking probiotics could help.

Keep us posted!

As far as I know I'm being strict, except for I didn't replace all of my pans, just cleaned them real well. I'm not Dr. Pepper-free , which is my weakness - I'm sure all the stuff in that can't be very good, but it's my favorite thing - lots of sugar though. My only grains are rice and corn. Perhaps I need to cut out those? Probiotics are in yogurt right? Is that enough? At least now I know for sure that gluten is part of the answer for me because I can't believe how the brain fog has lifted and these other weird symptoms of tingling and tremors seem somewhat better - for the first time in 9 years I have a little control yay! I still can't stand or walk very well, but hopeful. I've always been the smallest one in my family and never gain weight. Thanks for the suggestions - do you think I need to replace my pans? - they are steel except for my one teflon-type coated one.

Lyme has been one other thing I have suspected - my doc put me on 6 weeks of doxycycline once for pansinusitis and towards the end I started to feel some improvement in some of my ongoing symptoms and the weakness, but he wouldn't continue past 6 weeks and I quickly got worse again when I stopped the antibiotics.

Micah

[dlp252]

Yeah, I can't do any grains, not even rice or corn. Sugar is bad too...feeds all sorts of stuff.

[CarlaB]

I have sixteen symptoms listed

donna

This is not directed to Donna in particular, but I wanted to mention, there is a LOT of overlap of Lyme and celiac symptoms. In fact, candida and heavy metal toxicity, too. So, if you have some of the symptoms, it's a possibility to explore, but it's not a diagnosis. I don't think anyone is taking it as one, but I wanted to point out there are other health problems with similar symptoms.

I'm not Dr. Pepper-free , which is my weakness

Candida has a lot of similar symptoms ... plus, sugar feeds Lyme. Artificial sweetners are very bad ... I'd try to find something else to drink. What about Propel to help you transition. It only has 2 grams of sugar per serving but still is quite sweet. It's not ideal, but it's a heck of a lot better than Dr. Pepper.

Lyme has been one other thing I have suspected - my doc put me on 6 weeks of doxycycline once for pansinusitis and towards the end I started to feel some improvement in some of my ongoing symptoms and the weakness, but he wouldn't continue past 6 weeks and I quickly got worse again when I stopped the antibiotics.

I would definately suspect Lyme because of this.

[CarlaB]

Bob and Carla--70% is pretty good, and that's a great shift from 15% Carla. It took me a lot longer those first months of treatment. I think I am 50-70% this past two weeks. Was

Yes, I'm really happy about the 70%. I'm herxing right now and am about 50%, so that's a HUGE improvement! I'm glad you are improving, too.

I am thinking that because I had my amalgams out 16 years ago and chelated, that I don't have as many complicating factors to getting better. I have a little heavy metal toxicity and we are chelating right now.

I also was aware of proper detoxification for the past 16 years, which I think helps because my body is capable of getting rid of the bad stuff. I've been using my far-infrared sauna since before I was diagnoses, as well.

It's funny, much of my day is focused on healing -- exercise, sauna, coffee enemas, etc. Plus, the regimen of supplements, meds, probiotics, chelators, etc. I also try to go on long walks after dinner.

It's not just getting rid of bugs, it's getting healthy.

[Guest micah]

You said somewhere that lyme is a "clinical diagnosis." I'm wondering, what is it in the blood test that suggests lyme? Is it not just a positive or negative test? Is it possible to have a negative test and the doctor still diagnose lyme?

Micah

[AndreaB]

Micah,

I don't have lyme but from what I understand is you can have negative WB's and still have lyme and have it diagnosed as a clinical diagnosis.

[CarlaB]

You said somewhere that lyme is a "clinical diagnosis." I'm wondering, what is it in the blood test that suggests lyme? Is it not just a positive or negative test? Is it possible to have a negative test and the doctor still diagnose lyme?

Micah

The blood test is a Western Blot. If you have one done, it needs to be done by IGeneX.

There are several bands they check ... both IgG and IgM. The tests require interpretation because some bands are Lyme specific and some are not.

Some people who are very sick with Lyme will have negative tests because their immune system is too tied up to have antibodies show up on the test.

Many (probably most) doctors don't really know how to read the Western Blot, so it's important to take it to an LLMD.

[Guest micah]

Okay, thanks....now this may sound dumb, but who interprets the WB - my doctor or IGENX?

Micah

[mftnchn]

As I understand it, the reason lyme is a clinical diagnosis is that the blood tests are still not totally reliable. So you need an LLMD and he looks at your history, symptoms, testing, and response to treatment to confirm the diagnosis.

[CarlaB]

Yes, as Sherry said, you need an LLMD to interpret. You can post your results here and we can tell you what they mean, but you need an LLMD for diagnosis.

[Guest micah]

Would you mind if I ask how much money it costs? I am disabled and on medicaid which doesn't give me lots of options - and if my doc doesn't use that lab and I take the kit in to him, I would think I would have to pay for it myself - which I'm willing to do, but do you have a ballpark of the cost? I have been sick so long and without any support from doctors (they ruled out the obvious things but then dx me with CFS which is meaningless), I'm just taking my health into my own hands as much as I can and I think I at least need to know what I DON'T have, if that is possible. It has taken me 9 years to even come up with ideas of what could be wrong. It has been so hard having this invisible thing disabling me and I don't even know how to fight it.

Thanks,

Micah

[CarlaB]

Micah, I do not know if Medicaide will reimburse you for the lab expense. You do have to pay up front.

The cost is $190 for the two Western Blots. There are other tests that you can get, but the essential ones are the two Western Blots (yes, it has to be both, they test for different things).

If you yourself cannot afford it, maybe there is someone else who is willing to pay for it for you. If you've been disabled this long, I think there's a good chance Lyme could be what's wrong.

There is a message board on Open Original Shared Link ... there might be someone there who knows about IGeneX and medicaide.

Keep us posted!!

[Guest micah]

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

[mftnchn]

That's really hard, Micah. I think it would be worth seeing if there is an LLMD in your area, and then discuss the financial issues with him. Hopefully he could have some options that would not be so costly.

There are a number of auxiliary issues to treating the lyme, not just antibiotics. So from my experience, I'd say that finding a good doctor is a key.

I am glad to hear that the gluten free is helping you, and hope that you will soon find more answers.

Just one more thought, there is a thread here on the forum of celiacs with mostly neurological symptoms. Have you seen that thread?