LymeNet Flash: need some help

This is topic need some help in forum Medical Questions at LymeNet Flash.

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Posted by wenan (Member # 10993) on :

This may be lengthy as I am new and I believe my

other post to Medical didn't go through. Today

has been a really rough day for me, actually the

last couple. In a nutshell, I have had an

indeterminate Igenex test which was done about 2

months ago. I have candida and mercury and

had/have hashimoto's thyroiditis up until the

spring of last year when I had a thyroid storm, my

levels went nuts, I became very agitated, bowel

issues, etc. My blood levels for thyroid came

back to normal by end of May when I had a stomach

flu and from that point on I started to get sicker

and sicker. My first doctor said I was in denial,

I was depressed and put me on lexapro. I had flu

symptoms, nausea, anxiety, my gyn put me on some

adrenal support (she felt I had adrenal

insufficiency) and cortef (a steroid), which

helped a lot. I very slowly started to recover

but not nearly to what I was. I went to many

doctors and got many tests. Neurotransmitters are

low, metals (positive), candida (positive), and I

also have some bacteria. All quest lab tests have

been negative for lyme. Co infections showed

exposures but currently no infection. My current

doctor I feel good about. I am on a special diet

for candida, working on detoxing the mercury, and

trying to build up my immune system. Also, my

liver results showed that my phase one is too fast

and phase two is too slow which explains two

allergic reactions to antibiotics this summer and

fall which sent me to the hospital. I tend to

react to very small doses of meds and supplements.

There is so much more to say but I don't know what

to do at this point. My doc agrees I probably

have lyme but she can't treat me with antibiotics

due to the liver. I just ordered the book

treating lyme naturally (or something like that).

Has anyone tried a voice print or allery

alternatives?

I am worried that I will never get well. I had to

leave my job. I have had some good days recently

but lately sleeping is an issue, pain in the tail

bone, exhaustion - how should I be talking to my

doctor? Any advice or thoughts on any of this?

Thanks so much for being there.

Posted by Lymetoo (Member # 743) on :

Here is one of your previous posts. Maybe it got pushed back to page 2 and you didn't see it??

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=050991

The way I see it is that you really should get a Western Blot by Igenex labs. Quest is AWFUL for Lyme testing. It's no wonder that the test came back negative.

Also....Do you have an LLMD?? A dr who is used to treating Lyme patients. That is essential!!!

Yes, you CAN get well. It will take time, but first you need a definitive diagnosis before you can proceed.

Posted by Lymetoo (Member # 743) on :

Here is another of your posts.

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=051023

If you come back days later, your post will likely be on page 2, 3, 4, or higher.

Go to the bottom of the page and click on "2" for page 2, etc.

Posted by TerryK (Member # 8552) on :

I'm sorry you are having a hard time. You are not alone. Others will be along with more info but in the meantime...

quote:
Co infections showed

exposures but currently no infection.

If you test positive for co-infections - even showing as past infections, the chances are greater that you have lyme as well. It has been proven that some people can be sero-negative and yet still have lyme disease. As I'm sure you've heard the tests are not accurate.

My understanding is that the co-infection testing is just as unreliable (many false negatives) so you may well have an active co-infection.

You haven't said if you are seeing an LLMD (Lyme literate MD) or not? If not, I would strongly urge you to find one. Perhaps you can get one to work with your current doctor since you are happy with them and they seem to be helpful and open to lyme.

To find an LLMD, go to the seeking doctor's section of this website and ask for references. Make sure the doctor is a member of ILADS. Those are the only doctors that I would trust to direct treatment when it comes to tick borne infections.

It sounds like you are doing some good things to get your health back on track. Personally, I'd get the candida under control and get the liver functioning ASAP and get myself on abx along with alternatives. Lyme and co's are tough and if that is what you have, you will need everything available to you in order to get better.
Terry
I'm not a doctor, these are just my personal views.

Posted by seibertneurolyme (Member # 6416) on :

It sounds like you are seeing an ACAM doctor. It is good that you have been tested for many things. The mercury issue is very controversial.

Before hubby was diagnosed with Lyme and coinfections he had many of the tests you have had -- spent thousands of dollars and about 2 1/2 years treating hormones, neurotransmitters, G.I. parasites etc.

The parasite treatment was beneficial, but the other issues could not ever be corrected regardless of how many supplements he took. Once he started Lyme treatment the other treatments have been more helpful, but he is still struggling to keep things balanced.

In my opinion, if you have Lyme and coinfections those need to be your top priorities.

If I had it to do over again, and the book Healing Lyme was available, I would try that treatment first before I attempted antibiotics. The reason I say this is because the herxheimer reactions can be very severe and unless you live in the same town as your doc it is very difficult to adjust doses of antibioitcs. Some docs are easier to work with than others.

If you decide to go the herbal route then I would advise going slow. Add one herb at a time and instead of starting at 3 pills a day start at 1 pill a day. It is better to go slow and steady than to overdo and totally crash.

Once you get up to 6 or 9 pills on the "Core protocol" of supplements you should know if it is helping or not. And I think you will have a very good idea of whether or not you have Lyme.

At that point you could add in antibiotics as insurance to make sure you really are getting rid of the bugs. Many people do both antibiotics and herbs at the same time.

I think the Lyme protocol in the book is very helpful -- not quite convinced that the coinfection treatments work as well as antibiotic treatments.

From what you say about your testing I think you probably do have Lyme and also some coinfections.

If you decide to try the herbal route there are many people here or on other support groups who can help you get through this.

Good luck.

Bea Seibert

Posted by Robin123 (Member # 9197) on :

If you decide to try the herbal route, there is an active email site discussing the Buhner herbs at [email protected]

Posted by 5dana8 (Member # 7935) on :

Hi Wenan

sorry you have been so sick and going threw such a rough time. It may feel like you never will get better but in time with the right treatment you will, so hang in there.

You have gotton some top notch advice so not much more I can say. I wanted just to add -since you mentioned not being able to do abx at the moment due to liver problems-

maybe you might want to have your liver checked if you try Buhner's Healing lyme herbal route. Not many, but some people have experienced liver problems with the herbs. Sorry I can't remember which herb it was ay the moment.

Good luck to you [group hug]

Dana