Pixie-Positive for Lyme and Addison's Disease

[pixiesmommy]

Today was our big LLMD appt- the results of Pixie's Western Blot test. She was positive on a lot of bands (Why do I always post late at night when I don't have the paperwork right here with me??)- something like 6 of them, and indeterminate on almost all the rest. Even the doctor seemed taken aback that there were so many positives on her. We're starting out on 125mg Amoxicillin 3x/day.

 

She had also done the adrenal cortex saliva test (along with me) and her results were clearly Addison's disease. She has basically no adrenal function whatsoever. She'll be on cortisol also 3x/day for this.

 

The only other things we are doing right now are Zyflamend for her back pain, oral high-dose vitamin C (to tolerance) and supposed to be trying to get a FARR infrared sauna installed in our home for the two of us.

 

My results are still negative- even with the additional testing he ran. We're still thinking mine might be so chronic it isn't going to show up yet, but I'm so allergic to antibiotics that we (myself and the dr) are hesitant to try to draw it out through abx treatment. He also stated that he is not convinced that abx are the "cure" for Lyme like people make them out to be. I'm supposed to start high doses of oral C and IV vitamin C as well. I'm not on abx at all and may not ever be, sounds like.

 

So here we are. PANDAS dx a little over a year ago (late Aug/early Sept 2009, and hdIVIG Sept 10/11, 2009, and now a positive Lyme dx Dec 2010. Hopefully we are slowly getting answers and making progress toward healing.

[Suzan]

Wow, amazing news (amazing in an OMG way). Lyme and Addisons! OK, well, now you have this information and can move forward even more. It is great that you have your diets so cleaned up which will only help with lyme treatment.

 

I don't have much time but wanted to recommend this book to you in case you have not read it yet. If you can't take abx, the protocol might help you and might even let you see if you herx, maybe draw out a positive (if you have lyme).

 

http://www.amazon.com/Healing-Lyme-Prevention-Borreliosis-Coinfections/dp/0970869630/ref=sr_1_1?ie=UTF8&s=books&qid=1293540475&sr=8-1

 

I am taking abx and doing the core protocol at the same time.

 

Susan

Edited December 28, 2010 by Suzan

[Suzan]

and supposed to be trying to get a FARR infrared sauna installed in our home for the two of us.

 

Do you know which FAR Sauna you are going to buy? I think I'm buying the portable one today (it's the only one I can afford).

[sf_mom]

Wow..... hopefully with the most recent diagnoses you'll see true healing for Pixie. Have they checked for co-infections yet?

 

They are currently working on getting my adrenal's functioning properly as well. I am taking two supplements that really seem to help called ATP Fuel and Adrenal Essence. I've also been taking herbs for Bartonella provocation and they are kicking my butt so don't under estimate their strength. I start a product called A-Bart this morning in addition too Bar-1..... I'll keep you posted on how it goes but definitely feeling the effects from Bar-1 alone.

 

Wishing you all the best for further healing.

 

-Wendy

Edited December 28, 2010 by SF Mom

[MichaelTampa]

There are a lot of non-abx treatments out there. They can certainly help. I think most who are successful with lyme treatment use both abx and a variety of other techniques together. The sense I get is that most cases are just too difficult without pulling out all the stops. Of course, there are exceptions, and everyone is different. I will also second the Buhner book Susan recommended. Here is another book that is excellent.

 

http://www.wellsphere.com/lyme-disease-article/insights-into-lyme-disease-treatment-thirteen-lyme-literate-health-care-practitioners-share-their-healing-strategies/764193

 

I really would recommend these books for anyone working on lyme disease, as I think alternate treatments beyond abx can help a lot, and for many will be necessary for the success they need.

 

Other non-abx ideas:

- there are Byron White herbal formulas as well, I am about to try, don't have them yet, some find them excellent (A-Bart that Wendy mentions is one of them)

- oxygen treatments (hyperbaric more costly and more effective), oxygen concentrator cheaper and helpful

- rife machine (some find useful, others not as much)

- acupuncture, massage, light non-aerobic exercise all good to keep things moving (don't overstress with exercise)

- high-dose niacin is a "natural" antibiotic, such as 3000mg per day, have to work up to avoid extremely painful niacin flushes

- electrical grounding during sleep (only if you know what you're doing, please don't electricute yourself)

- heavy metal detox of some form necessary, with abx or without, FIR sauna can help, Allergie-Immun treatments from Germany are excellent to help get this going, be sure to add binders to help eliminate them rather than moving them around

- addressing parasites/worms and/or mold issues also can be very important for some, bear in mind, standard parasite/worm testing technology is worse than lyme testing, not worth the time, I have had good luck with some herbs and avoiding onions/garlic/mustard which feed the worms

 

The picture of someone with adrenal insufficiency to the point of being diagnosed with Addison's disease, negative lyme test results, and believed to be allergic to abx, all fits well into a picture of someone with lyme but just too sick to show it in the tests. Unless your adrenals have been permanently destroyed from your condition, they could recover function if you are able to get the lyme treated. Also, I have heard there are many stories out there where people think they are allergic to antibiotics, but they really are just overwhelmed with infection, and the reaction seen as allergic is actually the Herxeimer reaction. That may not be the case with you, but it sure fits with the adrenal insufficiency and negative test results. Perhaps if you start slow with the non-abx treatments, and work up, you might eventually be able to tolerate the abx.

 

Best of luck getting going with all this!

 

Michael

[sf_mom]

I was also wondering if they ever tested CD57 for you and if they were low?

 

-Wendy

[norcalmom]

Hi pIxie's mom. Wow. I was just looking up Addison's because I was curious about it (and bcs I have a couple of the symptoms, which I already knew). IT did say that chronic infection (esspecially fungal) can bring it on, as well as T.B..I forget what else.

 

I did notice that the tests for it are all blood tests (as well as an ultrasound of the glands to determine the extent of damage the disease may have caused). You indicated that you had taken a saliva test. Sometimes I wonder if one condition may cause false pos or negative on a different test. Persoanlly, given the severity of an addison's dx and drugs to treat it, I'd see an endocrinologist for a second opinion, and/or do some more testing. (maybe you already have?)

 

Wishing you the best in your recovery - sounds like you are making great strides!

[pixiesmommy]

I'm battling a terrible upper respiratory (flu?) thing right now, so bear with me if I am not clear, or short with my wording.

 

-Not sure which sauna yet, but looking into it and hopefully can get one soon. We really need a two person since Pix won't go in alone (assuming we can get her in there at all... /sigh)

 

-Calling Monday to a ped endocrinologist to see if we can get her in ASAP to run additional testing about the Addison's/adrenal stuff. I don't want to start dosing her with cortisol until I really educate myself, and I have read that the saliva testing can be questionable. Really, really stinks to have to put her through more appointments and more testing, but she is being a good sport so far. I don't know what I will do if they want to do an adrenal challenge on her (looks like there are some injections involved) because I don't want anything else put INTO her, especially an injection. So hard to know who and what to trust!!!!

 

-Not sure about the CD57- I think they did that one and it was low for both of us. There was one test for immune function (this is the one, if I am remembering correctly) that was 60 for the lowest and I was 60 and Pixie was 22. I'll have to check the paperwork though to be sure if that is the one you're asking about.

 

-Abx allergies- I'm anaphylactic to most of them. I can take Azith, but it and Cipro are the only 2 oral abx I can take without having a severe reaction. I was on abx for most of my childhood (probably saved me from PANDAS, but I have severe and lifelong candidiasis issues stemming from them) for acute and chronic sinusitis. I didn't get the sinusitis until after one particularly bad tick bite, BUT I did have repeated strep infections prior to that tick bite. Again, which came first?

 

If we have congenital Lyme, then who knows how far back it goes. There are so many similarities in the health issues of my family members (particularly if you trace the maternal side back)- leaky gut and all that goes with that like eczema and psoriasis, some (I would say mild to moderate) psychiatric issues, thyroid issues, arthritis, chronic infections.... really makes you wonder.

 

More later when I am more clear-headed and have paperwork in front of me!! I promise!

[Fixit]

Wow, amazing news (amazing in an OMG way). Lyme and Addisons! OK, well, now you have this information and can move forward even more. It is great that you have your diets so cleaned up which will only help with lyme treatment.

 

I don't have much time but wanted to recommend this book to you in case you have not read it yet. If you can't take abx, the protocol might help you and might even let you see if you herx, maybe draw out a positive (if you have lyme).

 

http://www.amazon.com/Healing-Lyme-Prevention-Borreliosis-Coinfections/dp/0970869630/ref=sr_1_1?ie=UTF8&s=books&qid=1293540475&sr=8-1

 

I am taking abx and doing the core protocol at the same time.

 

Susan

 

i almost made an appointment to see the author..he's a DO and is in TN...

any thoughts on that or recommendations

[Suzan]

i almost made an appointment to see the author..he's a DO and is in TN...

any thoughts on that or recommendations

 

Oh I didn't know he saw patients. I think he really knows his stuff and he came highly recommended (his book and protocol anyway). Sounds like an interesting appt, you'd probably learn a lot. What else are you doing as far as treatment (I'm sorry I can't remember tonight).

 

Susan

[pixiesmommy]

I was getting ready to update, but since this is back at the top, I will just put it here. Pixie actually has been out of school 2 days this week with extreme fatigue/mania, some growling (tic?) during play, short-temper, and just looking anxious, as well as back and knee pain, headache, sleep issues and white pimples along the side of her cheeks. All of this tells me she has strep again. I'm up against a wall at this point with the strep or lyme or whatever the heck is going on.

 

I wrote this in a PM earlier and felt like I should just cut and paste it here too:

 

I wish I had better news for you, but we haven't made any progress with the Lyme treatment.

 

We did a bunch of expensive out-of-pocket testing (blood, urine, saliva) that all came back pretty questionable for both myself and Pixie. Pixie got a bunch of positives and double-positives on her Western Blot, however.

 

She is on high doses abx (Amox 250mg) 3x/day now to treat the Lyme (for 3 months and then supposed to re-test,I assume with the Western Blot again) but she has strep again even on this dose. (We came to the Lyme board from the PANDAS board.)

 

She and I are both supposed to be taking high doses of vitamin C (to tolerance) each day orally, but we can't tolerate more than 1 tsp. without being in the bathroom all day. The doctor won't see us again until we do a urine test for mold, which is $250/each. I am supposed to be going for 6 IV vitamin C sessions with him, but a friend of mine with cancer who is also very knowledgeable about these things (she has cancer, she cured her son of autism, and is a chiro who treats PANDAS kids...) said that that is really scary and to ask a lot of questions. The dr just brushed me off, so I'm really freaked out. Also, they take CASH ONLY for any IVs they do, which I think is shady and weird. (The insurance said it's totally covered, but I'm dubious- we've had them say that before and then deny us for something totally irrational like a nurse administering instead of a doctor himself or some other such coding, etc nonsense.)

 

So right now we are just stumped. We're rapidly running out of money. The tests are so expensive that we aren't going to be able to do any treatment once we figure out what is going on.

 

Oh, also, he ordered Saliva tests for cortisol to see if we had adrenal fatigue. Pixie's was pretty flat-lined, so he said Addison's and prescribed cortisol 3x/day. We went for a second opinion yesterday to a ped endocrinologist and he said that is not the test to do for Addison's, it is the test for Cushings (producing too much) and you have to repeat it at least 3x for Cushings, even. So now we have to do blood-work for Addison's with him.

 

My head just spins, you know? Nothing is easy about this. No one can just say Yes, you have this, or No, you don't and then start treating you and tell you what kind of $$ you might spend or what kind of time-line you might be looking at. It all feels like one big secret. I'm just really down in the dumps about it all. We've invested a lot so far, and I realize it takes time, but we are going NOWHERE right now.

 

 

What I really want is for someone to be honest with me and say, yes if you do have Lyme then here is something of the protocol and here is something of the expense. When I talk expense with this doctor, he just looks at us like we have 3 heads and says he doesn't do the billing. The billing person looks at us with pity and says she doesn't know either. How can they NOT know? When I go to the chiro to do alternative therapy there, they know EXACTLY- on the computer- immediately- what my benefits are, how much I have left, what all the codes are, etc.

 

I'm ready to tear my hair out, can you tell?

[Fixit]

I was getting ready to update, but since this is back at the top, I will just put it here. Pixie actually has been out of school 2 days this week with extreme fatigue/mania, some growling (tic?) during play, short-temper, and just looking anxious, as well as back and knee pain, headache, sleep issues and white pimples along the side of her cheeks. All of this tells me she has strep again. I'm up against a wall at this point with the strep or lyme or whatever the heck is going on.

 

I wrote this in a PM earlier and felt like I should just cut and paste it here too:

 

I wish I had better news for you, but we haven't made any progress with the Lyme treatment.

 

We did a bunch of expensive out-of-pocket testing (blood, urine, saliva) that all came back pretty questionable for both myself and Pixie. Pixie got a bunch of positives and double-positives on her Western Blot, however.

 

She is on high doses abx (Amox 250mg) 3x/day now to treat the Lyme (for 3 months and then supposed to re-test,I assume with the Western Blot again) but she has strep again even on this dose. (We came to the Lyme board from the PANDAS board.)

 

She and I are both supposed to be taking high doses of vitamin C (to tolerance) each day orally, but we can't tolerate more than 1 tsp. without being in the bathroom all day. The doctor won't see us again until we do a urine test for mold, which is $250/each. I am supposed to be going for 6 IV vitamin C sessions with him, but a friend of mine with cancer who is also very knowledgeable about these things (she has cancer, she cured her son of autism, and is a chiro who treats PANDAS kids...) said that that is really scary and to ask a lot of questions. The dr just brushed me off, so I'm really freaked out. Also, they take CASH ONLY for any IVs they do, which I think is shady and weird. (The insurance said it's totally covered, but I'm dubious- we've had them say that before and then deny us for something totally irrational like a nurse administering instead of a doctor himself or some other such coding, etc nonsense.)

 

So right now we are just stumped. We're rapidly running out of money. The tests are so expensive that we aren't going to be able to do any treatment once we figure out what is going on.

 

Oh, also, he ordered Saliva tests for cortisol to see if we had adrenal fatigue. Pixie's was pretty flat-lined, so he said Addison's and prescribed cortisol 3x/day. We went for a second opinion yesterday to a ped endocrinologist and he said that is not the test to do for Addison's, it is the test for Cushings (producing too much) and you have to repeat it at least 3x for Cushings, even. So now we have to do blood-work for Addison's with him.

 

My head just spins, you know? Nothing is easy about this. No one can just say Yes, you have this, or No, you don't and then start treating you and tell you what kind of $$ you might spend or what kind of time-line you might be looking at. It all feels like one big secret. I'm just really down in the dumps about it all. We've invested a lot so far, and I realize it takes time, but we are going NOWHERE right now.

 

 

What I really want is for someone to be honest with me and say, yes if you do have Lyme then here is something of the protocol and here is something of the expense. When I talk expense with this doctor, he just looks at us like we have 3 heads and says he doesn't do the billing. The billing person looks at us with pity and says she doesn't know either. How can they NOT know? When I go to the chiro to do alternative therapy there, they know EXACTLY- on the computer- immediately- what my benefits are, how much I have left, what all the codes are, etc.

 

I'm ready to tear my hair out, can you tell?

 

real quick...maybe she is herxing..someone else might be to answer that...

we are doing hd vit c..i will say that if can get a form of absorbic in a capusle...that seems to give less digetion problems for me than the straight powder form...you would think it would be the same once the capsule dissentigrates(sp)..but it isn't...

i am ready for bed but i can pm some stuff i have somewhere on vit c..tomorrow

[Fixit]

i almost made an appointment to see the author..he's a DO and is in TN...

any thoughts on that or recommendations

 

Oh I didn't know he saw patients. I think he really knows his stuff and he came highly recommended (his book and protocol anyway). Sounds like an interesting appt, you'd probably learn a lot. What else are you doing as far as treatment (I'm sorry I can't remember tonight).

 

Susan

 

now you are making me wonder if i have the right guy....he looks like keanu reeves(sp)?

Edited January 13, 2011 by Fixit

[Suzan]

now you are making me wonder if i have the right guy....he looks like keanu reeves(sp)?

 

LOL, I'll have to go look. You probably have the right guy, I just have a super poor memory right now! I looked up DO and that's a great sounding practice. If I find out more I"ll post again.

 

Susan

[justinekno]

I recently had my cortisol levels checked (along with other thryoid testing) by our integrative MD. This was done through a blood test where I had to fast after midnight and have blood taken at 8:00AM and then go back at 4:00PM (I could eat in between this time) and have blood taken again. My cortisol AM levels were low amd the PM ones were normal. My dr said that your cortisol levels are like a gas tank where they should be full in the morning and slowly go down throughout the course of the day. She asked if I was overly tired in the morning, which I am. She says that this suggests I am not getting enough good sleep and she said I could try Melatonin but she first suggested yoga since I have noticed that I sleep better when I exercise daily. So far - so good There was no mention of any kind of "medication" being needed.

 

Also, just to give you an idea of our experience with our LLMD, he is very sensitive to costs and will check a test for insurance coverage before sending us on our way to have it done. He hasn't ordered a ton of tests (although we came to his office with so many lab results that he didn't really need to!) but he has been very up front about the costs. I think any good dr should be sensitive to money issues, especially in this economic climate.

 

 

Oh, also, he ordered Saliva tests for cortisol to see if we had adrenal fatigue. Pixie's was pretty flat-lined, so he said Addison's and prescribed cortisol 3x/day. We went for a second opinion yesterday to a ped endocrinologist and he said that is not the test to do for Addison's, it is the test for Cushings (producing too much) and you have to repeat it at least 3x for Cushings, even. So now we have to do blood-work for Addison's with him.