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Posted 10/17/2017 2:06 AM (GMT 0)
Hello all,

I am new to these forums having just begun antibiotic / detox protocol under the direction of LLMD. I received my Igenex test results this morning:

Western Blot IgM

IGX: Negative
CDC/NYC: Negative

39 IND
41 ++
66 +

Western Blot IgG

IGX: Negative
CDC/NYC: Negative

41++

I have no medical training and lack the understanding of how Lyme hides itself or how the tests are often unreliable. My LLMD was certain I had Lyme from the time of my first appointment simply from the fact that I previously lived in the Albany, NY, area, was bitten by a tick, and developed an EM rash. At this point, I am simply trusting in the wisdom of the LLMD and following the treatment protocol. I do have misgivings about the whole thing. For starters, I simply just don't feel satisfied with the diagnosis, as I'm not convinced the LLMD is herself convinced. A lot of talk about possible dental cavitations and biotoxin illness (I've had quite a lot of dental work done in the past including root canals, extractions, and metal fillings). What really strains the whole situation is the LLMD is direct selling me on a line of natural products that she takes commission on. These are supposedly necessary to take for detox purposes in addition to the prescribed antibiotics (Doxy and Plaquenil). My lack of understanding Lyme in general + the test results + being marketed to by the LLMD - all has me second guessing the diagnosis and treatment.

As a newcomer, I'd be grateful for any thoughts or observations you might be willing to share. Thanks to each and every one of you who contribute your time and effort in building this community. I'm glad I made the decision to join.

With every hope for the future,

LymeLex
Posted 10/17/2017 2:36 AM (GMT 0)
Hi lymelex - welcome!

Sorry you have lyme, but glad you found your way here.

I'm pressed for time right now, but wanted to say that an EM rash is diagnostic for lyme disease. It DOES NOT matter if you test negative on the Igenex test.

I can't comment on the products your LLMD is selling. I do know how that makes you feel though, is my LLND wants me to take what he has in his office, as well...and it gets really expensive.
Posted 10/17/2017 2:50 AM (GMT 0)
Some suppliments are certainly justified, a good llmd can/may run tests for adrenals, thyroid, among others, as well as routine blood work. Many suppliments they sell are for your specific needs. Sometimes, though, you can find adequate suppliments elsewhere.

We are glad you found us.

And yes, sorry, you have Lyme. Testing is horribly inaccurate. A good llmd will diagose and treat on clinical symptoms. Testing is helpful if you can pull a positive result for insurance purposes for Lyme and co infections.
Posted 10/17/2017 3:08 PM (GMT 0)
Nothing can give you an EM rash except lyme disease. Sorry, but that is a positive sign for lyme disease and testing is very unreliable, no matter what lab you use.

My doc wanted me to buy and take some vitamins from his office. I was sick and didn't want to argue, so I bought the first bottle. I got home and checked the ingredients and found the same thing at many other online stores and a lot less expensive.

My second LLMD wanted me to buy his tinctures from him. It was Beyond Balance and was a herbal protocol. I bought those and was extremely impressed. I could not find a product that was the same online. My doc's office said they did not make any profit on selling it.

So, you kinda have to test out what they are selling to see if it is what works for you.

Lyme treatment is one heck of a lot of trial and error. You try something and see if it works and if it doesn't you move onto the next thing.

Glad you joined us. If you have some time, reading the New to Lyme thread at the top of the page has a ton of information in it.
Posted 10/17/2017 3:28 PM (GMT 0)
Thanks everyone for the helpful comments and kind words of welcome. It is interesting to me that a lot of the LLMDs sell their own products. Naively, I guess I expected more uniformity among ILADS LLMDs as far as what they prescribe, but each case also seems to be so unique in the presentation of symptoms, possible co-infections, etc - there are a lot of moving parts. Other than the high costs of all this in getting started on treatment, on the plus side I am oddly excited about taking two antibiotics at the same time, I guess in the hope that I might actually start killing some of these invaders! I would be curious to know of anyone's experience taking Doxy + Plaquenil, as it seems that the latter isn't very often prescribed...
Posted 10/17/2017 5:08 PM (GMT 0)
lymelex, my best advice is for you to learn about detoxing, if you haven't already.

Here is a great article on it:

www.tiredoflyme.com/detox-methods.html
Posted 10/17/2017 9:31 PM (GMT 0)
Welcome
Posted 10/17/2017 10:03 PM (GMT 0)
lymelex,

Welcome and so sorry you have Lyme. I just wanted to chime in with agreement with what others have said. I totally relate to what Peteza said. I understand your misgivings.

I went to a functional MD a year ago in search for answers for the increasingly worsening symptoms I was having after getting no answers or help from conventional doctors. That was my first experience seeing an alternative MD. She wanted me to have all kinds of tests, some of which insurance did not cover, and wanted me to take the supplements that she sold. She explained that she didn't make profits for selling them and the reason she wanted me to take those was because the training she had indicated those products were found to be successful based on patients lab tests.

Doctors want to have confidence that what they direct patients to do is likely to work and also not likely to cause harm. There's no way they (or we) can know how every brand of every product stacks up against each other, as they are not all tested. There are some sites that do provide that data but only on what they've actually tested. I found one of those sites the other day - labdoor. I was surprised to see some of the supplements I'm using were found to be unsafe or ineffective and I thought I was using reputable brands.

If you have serious misgivings or don't respond well to any of the products, let your doctor know. A good doctor will want their patients to understand what they're doing and feel comfortable with the treatment prescribed.
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