My LLMD Appt

I saw my Dr on February 7, 2009. This is the appointment in which my PICC line was pulled. I found out lots of things that are disheartening, but also left with hope as always.

The reason I have not wanted to post exactly what I am getting on this blog or any other public forum is for political reasons. Some doctors do not believe that Chronic Lyme exists. Some doctors do. Some doctors that do believe in Chronic Lyme believe in strictly Antibiotic treatments and others believe that there are some alternate methods of treatment. I have a doctor that believes in BOTH methods. The more he learns about Lyme & treatment the more he believes in an alternative path of treatment.

In September, I had a live blood analysis done. I have never asked about other patients that have had this done. However in my appointment on Saturday, my doctor mentioned that the doctor that does this Live Blood Cell Microscope now comes to his office every other month. He now clears his day for these appointments so he can see exactly what is going on with his patient's blood cells.

He said in January there were 5 patients that had this Live Cell done. Three of those patients used the treatment like I used. This Experimental Alternative treatment. Two of the patients used regular antibiotics. Apparently two months prior, they both had about the same amount of borrelia in all three forms of bacterial (L shape, spiral shape & cyst shape). Well in January (IF I am understand correctly) .. the 3 patients that did the alternative method ... there were VERY FEW Cyst forms and their spiral loads had decreased dramatically. The two patients that had done antibiotic therapy .... had LOTS OF CYSTS and lots of the other types too.

What does this have to do with MY appointment you ask? Well, I just found out that my doctor is having difficulty getting the alternative therapy. The doctor that invented this along with another physician in Texas are in trouble with the medical board in Texas because they have been using this treatment. The doctor that invented this & the doctor in Texas have had very high success rates with this treatment. I do not know the whole break down of the situation, but either way it is making it difficult for doctors to get this treatment.

As it was, the compouding pharmacy that made this drug wouldn't send it to North Carolina. So my doctor had to order it through another doctor who would sent it to the few patients he had on this protocol. Well now that doctor has closed his office making it impossible for my doctor to get his hands on these treatments.

THIS TREATMENT HAS SAVED MY LIFE!!!!! I am so upset that not only will I not be able to finish this treatment, but that others that have just begun this treatment won't have access to it either. This is why I was so not wanting to talk about it b/c it's so controversial that if anyone got wind of it .. it would be unavailable. I'm frustrated b/c it's gotten me so far.

So what is in my future? For now, we will stop (obviously we have to b/c he has no more of this drug in his office) and will look at an alternative to use. First in a couple of weeks, I will do the MSA test. This is the test that looks at my "energy" and decides which supplements balance in my body and which things I do not need. It has also correctly identified that I had heavy metals, bartonella, babesia, parasites, candida, and borrelia before any tests picked up on it.

I will not be on any Antibiotics. We are going to be working on getting rid of the damage that was caused by Lyme Disease. I will also start on some fiber to get some of this mess out of my colon (how loverly).

As long as things go as planned, I will not have another IV for 6 months. Our plan for now is for me to start on this stuff called OSR. I don't really quite understand it, but from what I do gather it helps the body make Glutathione. With that, it will help my body detox from Heavy Metals and maybe other things (my guess). Then in 6 months, I will have another IV Chelation Challenge. By that time, my veins should have healed from the PICC line and it will have been well over a year since my veins were accessed by IV other than the PICC.

If my metals have decreased, we know that what we're doing is working. IF my metals have increased or stayed the same, we will know that what we're doing is not working. It will be determined at that point whether more IV Chelations are needed. Of course at that time I am guessing if it is determined that I *do* need more of those ... OR I'm backsliding and am needing IV treatments and my vein access is not great ... another PICC will be discussed, but we're both hopeful that will not be needed.

Also I am going to get another Western Blot test just to see how my bands line up (I really want a CDC positive to SHOVE in my regular physician's face).

So that's all for now.

Jennifer's Lyme Life

**Updated** May 8, 2009
For those of you that are just learning about my Journey, go to these old blogs to see how far I've come.

My Diagnosis
My Therapy
A day in the life of a treatment
My PICC Line Story Part 1
My PICC Line Story Part 2
Grey's PICC Line Story
November 15, 2008 Update
Mercury Toxicity (My Mercury test came back negative)
Aluminum Toxicity
PICC Line Removal
Two weeks post PICC
Two year anniversary plus supplements
March 15, 2009 Update
Post PICC Pics
Conflicted Lymie
CDC Positive Test Results
Ups and down of Lyme

There ya go. The most important health blogs all in one place! Enjoy reading if you've not read them before.

5 months ago

I've had my PICC line for five months today. I thought my PICC and I would only be together for a month or two. I've been to the hospital with it once and had several prescriptions written for it to be x-rayed. Fortunately I only had to go back to Rex the one time and they "fixed" the problem.

I am hoping to be able to end this PICC by my birthday, but who knows what God has in store. It's in January that I go for the Chelation Challenge. If my Chelation challenge shows that I have a lot of heavy metals, then I will need vein access more often than a regular IV can give. If my Chelation Challenge shows that I only have a little bit or no heavy metal toxicity, then I can give up my PICC.

I am content with either option as long as Priscilla the PICC stays happy. :)

*lost track of time* said 4 months originally, but DUH July 17 to December 17th is 5 months. (You might be a lymie if)

*tomorrow begins my 3 day post on Love.

Chelation Challenge

Essentially what I will have done in January is a test and a treatment at the same time. I will sit down in the same chairs that I have my other treatments done. They will attach two specific drugs to my PICC line (should I still have it ... if I don't have it, then they'll do a regular IV). The first one will run in and then they'll switch out the medications and the 2nd one will run.

Then I will have to pee in a huge jug for the next 6 hours. Essentially what the medication does is bind to heavy metals. Then when I go to the bathroom, it will go out with my urine. Then I will shake this huge jug and pour a little bit out in a specimen cup for sending out for testing. Upon receiving the results to this test will determine my treatment plan from there.

I can't have this chelation challenge until I increase my minerals. This drug will bind to minerals as well so I will need to increase my minerals before so that I won't be deficient after the challenge. I will also likely have to have an IV of minerals a week or two before the challenge though I wasn't quite clear with that information.

Mercury Toxicity

For a while now, we have thought there was some Heavy Metals in my body. It showed up in my live cell analysis and my MSA test. So I decided to do a little research on Mercury Toxicity to see what symptoms were. I wanted to know what are the chances that this has been going on just as long as Lyme Disease.

Mercury Poisoning causes problems in the

Central Nervous System -- which includes anxiousness, loss of memory, lethargy, tremors, numbness of hands & feet --- and other symptoms too

Head Neck and Oral Cavity Disorders -- bleeding gums, excess saliva, bad breath, metallic taste, sores in the mouth, ringing in ears, and other symptoms

Gastrointestinal Problems -- food sensitivities, cramps, other GI complaints, diahrea and/or constipation and other symptoms

Cardiovascular Disorders -- abnormal heart rhythm, EKG findings, elevated tiglycerides, elevated cholestoral, abnormal blood pressures, all unexplained.

Immunlogic --repeated infections, viral, fungal, mycobacteria, candida and other yeast infections, cancer, autoimmune disorders, arthritis, Lupus, MS, ALS, hypothroidism, and other problems.

Systemic Effects -- chronic headaches, allergies, dermatitis, thyroid problems, subnormal body tempeture, cold and clammy skin, excess sweating, sensory symptoms including pain, numbness, anemia, kidney disease, adrenal disease, fatigue, loss of appetite with or without weight loss, and others.

I decided to bold all the issues I've had trouble with that may or may not be Lyme Disease related. The problems that I still have currently are italicized.