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Posted 9/24/2014 4:38 PM (GMT 0)

Hello,

 

So I am not sure how to feel about my visit with a new LLMD I saw. I drove 3 hours one way to see him because there aren’t a lot of LLMDs in my state. So in the exam he looks at the positive IgeneX test, he listened to some of my symptoms and looked at my MRI report. He tells me that this is definitely severe Neuro-Lyme and we need to get me started on IV abx ASAP. He was adamant about this. He then has be go do a test so he can get a better idea of what will work for me. This test was the same type of thing I have been through before and to be honest I am a skeptic of its legitimacy. It is a bio-energetic feedback machine. http://www.devicewatch.org/reports/zyto/overview.shtml . You basically put your hand on this thing that looks like a mouse and is hooked to a computer. It then sends signals out and measures your response. This then tells the doc what drugs/herbs will work for you. Well the results of that test came back with a Bartonella supplement and nothing about Lyme. So I buy the Bart supplement (which was on site because he basically has a whole store in the office) and go on my way because the doc wanted to go over my bio-feedback results and formulate a plan. So when the doc calls me back later that day he says he wants me to take an antifungal, the bart stuff, and some stuff for energy I was already taking. The antifungal was becasue I ahve been on oral ABX so long. He tells me that I may have CCSVI which is a condition (which may or may not even exist) that is associated with MS. He then tells me in a few weeks he is going to put me on cholesterol meds. So… Ummm… Yeah. Now I am even more confused than when I started.

 

So I really have to wonder at this point if there is any validity to this bio-energetic stuff. I feel like it is pseudoscience but this guy apparently believes in it as well as the first supposed LLMD I saw almost a year ago. The first LLMD said the reading said I have MS but it didn’t pick up the Bart or say anything about herbs. I just wonder how a doc can be so sure of a DX by looking at the tests and symptoms and then change his mind based on a 5 minute test with my hand on a mouse like device. Seems crazy to me.

Posted 9/24/2014 4:52 PM (GMT 0)
Akkami - I haven't heard of that machine...so can't comment on that. But, I would be skeptical, too. But, it's not costing you anything, correct? It was used as a diagnosis, not a treatment?
What is CCSVI? Does it sound plausible that you have that?

Maybe after a while on the bart supplement you will feel an improvement. So, have you stopped antibiotics?
Posted 9/24/2014 4:52 PM (GMT 0)
I'm sorry Akkami! That stinks! It is always good to have confidence in your practitioner, especially with lyme. I think, like anything else - it depends on the person as far as the biofeedback etc, what works for one, will not work for another.

My ND uses biofeedback, not exactly the same - hers is more on par with the Asyra machine and uses acupuncture points to test things but same principle. And so far I would say about 90% accurate based on blood work that she didn't have access to and the remedies that worked for me.

I really hope though that this doctor may have a plan that sounds reasonable to you and more importantly...that works! Please let us know how it goes!

~beth
Posted 9/24/2014 4:55 PM (GMT 0)
Is CCSVI - what some of the MS patients have been diagnosed with? And wasn't there a treatment for it that was controversial? - to open up the veins so more blood flow to and from the brain happens/

Can't remember
Posted 9/24/2014 5:02 PM (GMT 0)
Thanks everyone,

Girlie- CCSVI is a condition where the blood doesn't flow from the brain to the heart correctly. It is being debated is it is an actual condition and if so how to treat it. So I guess it's possible I have it in the sense that it is possible that I have MS. CCSVI is associated almost exclusivly with MS. Honestly as time goe son and my symptoms becasue more MS like, I am of the mind that is IS MS and the Lyme was just the kickstarter for it.

Opugirl- that is really amazing to me that the method is accurate for you. I now have 2 people using that method basically telling me I have MS. So... I guess I have MS. Neat. Only problem is the neurologists won't diagnose me with MS becasue of all my other symptoms. So I am stuck getting worse and worse every day. Not to mention the last nero I saw said if it is MS it is the progressive kind for which there is no treatment. He still didn't DX me though.
Posted 9/24/2014 5:03 PM (GMT 0)
Yes Girlie it is contreversal for sure. Might casue more harm than good.
Posted 9/24/2014 5:11 PM (GMT 0)
Akkami - If there are additional symptoms to the MS, isn't is plausible that you have lyme, as well...or maybe it's lyme induced MS. There are some Dr.'s who believe that MS is from lyme.

If I were you, I would treat for lyme - you have such strong reaction with the antibodies showing on your Igenex test results.

At least if you treat the lyme, you will eventually have relief from some of your symptoms.

Re: MS - there are clinical trials with stem cells going on currently..and it's very promising there could be not only a treatment to stop progression, but also repair the damage.
Don't lose hope, Akkami - keep fighting.
Posted 9/24/2014 5:21 PM (GMT 0)
Thanks everyone. I think Im spent though.
Posted 9/24/2014 5:22 PM (GMT 0)
I have had bio energetic testing done too. According to my provider I have severe food allergies ( which I don't seem to have), a protozoa problem and severe nutrient deficiencies at the cellular level, and heavy metal toxicity. Supposedly, I'm supposed to address these issues first before I can move on. I went back about a month later and retested with the same results. I'm sorta stuck because this provider won't let me move in with anything else until these results clear.

If by cholesterol meds he is referring to Cholystramine, that is ok. It's a toxin binder.
Posted 9/24/2014 5:31 PM (GMT 0)
Akkami - do you have anyone close to you that you can talk to? Anyone for support?
If not, are there any support groups near you?
Honestly...it's been my experience over the years that Dr's don't "know it all". I say this, not just because of my Lyme disease experiences, but because of experiences with the rest of my family members. They're not God...they don't know everything.
Sometimes what they tell you can be discouraging and result in you giving up...please don't do that.

For example: My husband was in a car accident in 2003 - had bad back pain...told it was soft tissue damage - one year later now has chronic pain - mid back...was told by three different Dr.'s including an orthopedic surgeon that he would not get any better, in fact he would get arthritis and get worse. He just ignored them.

Another year later (2005) - his back pain was gone. All he did was exercise and bought an inversion table.
He thinks it was nerve damage...and it just took two years to heal.

Sorry for being long-winded...but just wanted to give you an example that the body can heal and sometimes the Dr's prognosis can do more harm than good. Please, please don't give up!!
Posted 9/24/2014 5:33 PM (GMT 0)
Louise-

WELCHOL (colesevelam hydrochloride) is a non-absorbed, polymeric, lipid-lowering and glucose-lowering agent intended for oral administration. Colesevelam hydrochloride is a high-capacity bile acid-binding molecule.

Posted 9/24/2014 5:35 PM (GMT 0)
I was thinking the cholesterol meds might be Cholystramine too. It is used with more and more frequency as a binder in Lyme disease treatments, even though it was developed for binding to cholesterol.

Lyme induced MS is a real thing - but you can heal from it too, but treating the Lyme disease. Since MS specialists are telling you that it's not MS because of the extra symptoms, then I would stick with Lyme infection and get it treated in whatever manner you choose.

If you want to go to other LLMD's for consults, keep asking around for more names - don't give up on yourself!! You deserve healing too, you just may have a few extra hurdles to get over.

If I would have given up - and I almost did - after I had been to a really good LLMD, been an abx failure, then had all my local docs turn their backs on me, I never would have experience healing either - I got seriously disgusted and became basically an activist for Lyme, but I didn't completely give up.

Hang in there!! Take some time to accept this and either go back or move on to someone that can help you!
Posted 9/24/2014 5:37 PM (GMT 0)
Akkami have you had your house tested for mold? If not then I highly recommend it! If you live in a moldy house you will not get better. As Louise said Cholestyramine is a great binder for anything that is fat soluble which is mold, pesticides, benzene, toluene, lyme toxins, etc. etc. and you want that so that is good. I know someone who does the Zyto but I myself am not so sure about it either. It's just one of those things who knows? Have you looked around for just a strictly alternative dr.? While they may not be a Lyme expert they will offer alternative therapies like vitamin C and glutathione IVs which are extremely beneficial. They may even give you a very good and reliable opinion of your new LLMD. Just a thought. Hope you can find help soon. So sorry you are suffering so much!
Posted 9/24/2014 5:45 PM (GMT 0)
Thank you Girlie. I actually have an amazing support system. My family is great, my wife helps me do things I can't do anymore and I have 2 nurses from previous doctors that send me thexts to check up on me. Not to mention everyone here on the forum. I know there are prople going through this alone out there. I know I am lucky in that regard. Unfortunately my mind has always been facts and science. I am not spititual or religious. I think if I was this process might be easier becasue I'd have something to hope for. So the science has failed me so far and the facts are constantly being disputed. All the while I am getting worse and worse. The left side of my body will be useless in a few months at the current rate of decline. So I hear what you are saying and understand that it is important to ahve a positive outlook.... I am trying.. I really am. It's just not the way my brain works.
Posted 9/24/2014 5:56 PM (GMT 0)
Akkami - Nice you have several people in your life that are supporting you!
I'm not sure if you need to be religious or spiritual to realize that the Dr.'s don't know everything and sometimes when they don't know...they diagnose with what it could possibly be rather than admit they don't know.

Also, Lyme can attack any of the body systems...and is known to produce plaque on the brain similar to MS. (you already know this)

Things can turn around. I had a brain scan for MS because back in October/November my legs (both sides) got weak and I had tremors in my legs and arms, along with vibrations. This was all before treating. It actually subsided on it's own. The tremors stopped, and my legs got stronger. They aren't as strong as they should be, but I can put enough force on the brake pedal again and drive safely. I am exercising daily now...and am getting stronger.

I know how you feel...I was convinced I had MS or ALS...the fear overtook me...I was a mess...but I'm still here and I am better now than I was last October.

Keep fighting!
Posted 9/24/2014 6:00 PM (GMT 0)
I think welchol and cholysteramine are similar. I'm not sure which one is better for lyme.

I think you have to trust your instinct and forge a healing path for yourself. Bart is speculated to be responsible for heavy Neuro symptoms. So maybe you are on a good path.
Posted 9/24/2014 6:28 PM (GMT 0)
Thanks everyone. I'm going to go ahead and do waht he says. Why not right? If it doesn't work it doesn't work. I just hope it doesn't make me worse is all.
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