Doctor says no to Lyme

When I was confused I took this test. lymeontario.com/wp-content/uploads/2015/03/Horowitz-Questionnaire.pdf

It convinced me that I should pursue lyme as the culprit for my lack of health.

How about taking this test and seeing what you come up with.

I am so sorry about dealing with doctors. I am not a super fan of most of them. Although I do have one that is my friend and one that is my favorite doctor in the world. So, not all of them are turkey butts.

Let me know how you do on the test.

When you feel better, take that test again. Make a copy of it so you can give it to your doctor.

When we are bit by a tick we get a whole salad bowl of "stuff." They don't just have lyme in them. They are blood suckers and without blood they do not survive. So just imagine how much "guck" could have been deposited into you. Icky thought.

Lyme can show our weaknesses. For me, it was my heart. I got high blood pressure and a pulse that was so very high.

Maybe lyme brought out viruses that were lying dormant? With lyme, I do believe anything is possible.

How to continue??? Print out that test and really discuss this with your parents. They have known you all your life and want the best for you. Ask them what they would do. Tell them you want to get well and need their advice. Honestly I don't think you will get better loving advice than from your parents. Just my opinion.

I did talk to my mom, but to be honest, they really aren't the greatest parents. They want quick, easy answers (I guess I do too), but when it isn't going right, they resort to getting angry at/blaming me.

My mom thinks I should see a gastroenterologist, as was suggested, but I'm not sure what the chances are that this is gastro-related; I have diarrhea, but no bowel pain etc.

To be honest, I don't think the other doctor is all that passionate about Lyme. He's an oncologist who does 'freelance' medical work and flies in from another state. The original doctor by law now has to pass all his cases on to other doctors for treatment, since he got in trouble. Given the oncologist is a specialist, he is allowed to prescribe certain antibiotics that the other doctor isn't.

I said to the oncologist that the Lyme tests aren't reliable and he told me practices "science, not black magic". I asked him what happens if I test negative for Yersinia and Coxsackie and he said, well then there's nothing to treat .. but I know there are more viruses than that.

outscruff said...
I think the original doctor -- who is no longer allowed to treat -- is good. His hands are just tied. Both doctors, however, said I definitely have some kind of pathogen wreaking havoc -- the supervising doctor said it is probably a complex mix of bacterial and viral; but the difficult part is working out what exactly ..

I am so sorry you are caught up in this vortex. Not understanding how to diagnose lyme & co doesn't make you a bad doctor or uncaring--but it does make you a bad fit for someone who needs treatment for lyme & co. You need to get yourself to another lyme specialist who is confident and experienced in making the clinical diagnosis that is necessary for this type of pathogenic illness.

- The tests are 50% accurate, at best. Lyme specialists know this and understand how the background for why the tests are often falsely negative and how to "work around" these results to get the most information out of the tests; most others in the medical profession do not.

- Lyme specialists know what else that is in your personal history and exposure to ticks in order to understand your personal risk level in order to augment a proper diagnosis; most others in the medical profession have none of these skills.

- Lyme specialists understand how to interpret your specific symptomology as clues to which pathogens are challenging your system and how to narrow down which possible coinfections and other pathogen loads are overloading your immune system (yes, you likely also have other viral loads, too) and how the pathogens might be manifesting themselves and causing stress on your body systems; most others in the medical profession simply don't have the experience to effectively understand the nuances of all of this.

And not all lyme specialists are created equally. From what we see here on the forum, there are a handful of excellent Lyme specialists and a handful of professionals who want to become one or think becoming one is a simple thing (or a lucrative thing), and then there is everyone else in-between. The truth of this journey for us Lymees is also that we are generally able to rely on our LLMDs for 50% of our care--it's really up to us to fill in the balance. There is just too little known about Lyme, no consistent treatment "givens" and too many unique complexities in each of our individual cases.

We can help you find someone else - I'm not sure if you've done this yet but you can post a new thread with "Looking for and LLMD/ND in ____."

Hope this is helpful!

-p

Krimpet said...
Is there anyway you can skype with a doctor? Many are doing this now. It just seems as though your options locally may be minimal.

I just don't think I can afford it, unfortunately. And I would still have to find a local doctor to agree to prescribing the abx.

Traveler did get well on herbs.

I did too.

Pirouette said...
I think trying Buhner's would be great for you and I know a lot of people do the protocol mostly on their own. But it seems like you still are in the discovery phase of understanding which pathogens you're up against. This doesn't necessarily mean you have to have an MD support for that but just wanted to suggest that there are a few stages before starting any protocol.

Have you seen Jernigan's symptom list? This might help you target what your symptoms might be associated with as well as what might be your dominant infection.
www.healingwell.com/community/default.aspx?f=30&m=3033860

What the symptom questionnaire doesn't include are the various viral or fungal issues that might also be present.

And before starting, it's critical to do two things - make sure your gut health is optimal - since nearly everything we're doing for our protocols we're ingesting and if we have problems absorbing/digesting, the protocols won't do much. And also to devise a solid detox protocol and get it going so that you'll be ready for any herxing and to minimize the impact of it.

Hope this is helpful - through some Q&A we might also be able to help you narrow down what to target.

-p

Thanks, I'll check through that symptom list.

Are there any herbs that might target bacteria as well as potential viruses?

outscruff said...
What are peoples' opinions on the Byron White formulas?

I am aware of members who take Byron White formulas and the consensus seems to be that they are very strong. Some people can't get past a small number of drops even when taking a particular formula for many months.

I suggest you do two things to get information about the formulas:

Use the forum search feature with the words "Byron White" to find previous threads.

Start your own thread titled something like "Byron White formulas - requesting input".

Most forms of treatment can get expensive and that's why I resorted to making my own tinctures.