Tuesday, February 10, 2009

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.


PJ said...

The political mess with Lyme is just crazy -- I had a positive CDC and my disability insurance said that even a positive CDC doesn't indicate that I have Lyme b/c late stage Lyme doesn't exist; it merely means I was exposed at some point ... of course that's there way of saying "if we believe you're not sick we won't have to pay you any money!"

I've heard about the Live Cell and have been wanting to have it done - but haven't found anyone in my area who does it.

Jennifer said...

I don't know any other doctor that does it other than the one that comes to my LLMD's office. And in fact, she used to not come to his office.

My doctor had a patient fly elsewhere for help. When another physician helped her, she flew back & gave all this information to my LLMD.

The other guy that helped her put the patient in touch with a doctor that does the Live Cell. This doctor actually travels with her machine, but I think only on the East Coast. Before I did the treatment I was doing, I talked to the patient and she told me about the microscope doctor. I was able to have it done once. Now my doctor has this lady come to his office every other month. Pretty cool huh? We're thinking about having it done again when she comes back.

Stacie said...

I came across your blog while searching for a LLMD and was wondering how you found a LLMD? It seems very hard to find one since their contact information isn't displayed for everyone to see. I tested negative for the antibodies for Lyme, however, I feel like it would be worthwhile to see a LLMD because my symptoms are spot on with Lyme Disease. I had some exposure to ticks in May before moving from Virginia to Texas (although I do not recall being bit). Since then it has all been down hill. My email address is stacieorvin@gmail.com. Thank you! Any advise would be greatly appreciated.

Jennifer said...

Hi Stacie, I am not sure if you're going to see this - but I found my LLMD by contacting my local NC Lyme Disease Foundation to find a LLMD in my state. However, you can contact www.ILADS.com and they will give you recommendation.

If you are still in Texas, contact Lyme Leader Belinda


She can point you in the right direction.

Tell her Jennifer of USLA sent you> :)