[Healthgirl]

As some of you know I have been going to a functional md who is treating me for mycotoxins with cholestyramine. I am taking an extremely low dose. I'm not having any bad effects, but don't seem to be having any good ones either.

This morning I went to a gastroenterologist and presented my neuropathy case, copper deficiency, anemia, and malabsorption.
I showed him the photos of my vascular rash, and the ones of my daughters that we started getting in the sun last year. Also about the kids on and off diarrhea. He agrees that it is pretty clear that some type of exposure has cause this (as does my local neurologist, and functional md).
He said there are some strange things that can happen from mold and not to rule that out.
I showed him the 2 case reports of the peripheral neuropathy caused by Giardia and he thinks I should stop the cholestyramine and do 10 days of Flagyl.
I am terrified of taking this, but he said if we do have a parasite, it will not go away with out treatment and that people can have Giardia for years.
He also was curious about lyme and other tick born stuff that could have gotten us. I told him I did 3 weeks of doxycycline in the beginning when they thought it was lyme and that it had no effect. At this point I don't know what is left besides troubleshooting with drugs. I don't want to live life this way unless I have to.
Any and all advice or information is welcome.

[Marlene]

Have they done stool tests on you and the family? I think i would first look for specific parasites and it may take more than one stool test to account for their life cycle.

Then depending on the result, my approach would be to do herbal treatments before a drug.

[onebeed]

Three weeks of doxycycline for Lyme is not enough.

[Healthgirl]

Originally Posted by onebeed

Three weeks of doxycycline for Lyme is not enough.

My lyme test was negative. Just two positive igg strands showed up and the infectious disease dr wanted to try the doxy just as a protective measure in case it was an undetectable strain. He said I should have had a big improvement by the end of 3 weeks (which I didn't at all).

Also, being that my 2 daughters developed the livedo reticularis rash with in weeks of me getting it, I started to give up on the lyme idea because that would have meant that we had all been bitten with in a similar time frame and thought the chances of that were pretty slim. I don't know what to think anymore. Some pathogen or toxin obviously got into us and I don't know what to do. Doctors are too busy to try to put this puzzle together.

[heb1212]

Originally Posted by Healthgirl

My lyme test was negative. Just two positive igg strands showed up and the infectious disease dr wanted to try the doxy just as a protective measure in case it was an undetectable strain. He said I should have had a big improvement by the end of 3 weeks (which I didn't at all).

Also, being that my 2 daughters developed the livedo reticularis rash with in weeks of me getting it, I started to give up on the lyme idea because that would have meant that we had all been bitten with in a similar time frame and thought the chances of that were pretty slim. I don't know what to think anymore. Some pathogen or toxin obviously got into us and I don't know what to do. Doctors are too busy to try to put this puzzle together.

Health girl... Have you and your girls been tested for parvo virus b19? And not just the igg and ohm, but the DNA. It can cause levido, neuropathy, severe muscle fibro type pain, gastrointestinal upset... You name it. It was the cause of the onset of my many health problems. There's no treatment for it.

[madisongrrl]

Originally Posted by Healthgirl

He said I should have had a big improvement by the end of 3 weeks (which I didn't at all).

I would say it's not a big improvement, but I definitely had a noticeable reduction of burning after 2 weeks of doxy.

[Healthgirl]

Originally Posted by heb1212

Health girl... Have you and your girls been tested for parvo virus b19? And not just the igg and ohm, but the DNA. It can cause levido, neuropathy, severe muscle fibro type pain, gastrointestinal upset... You name it. It was the cause of the onset of my many health problems. There's no treatment for it.

I know they had it when they were younger. It was a pretty easy virus. They had the slapped cheek, and my son had the lacy arm rash for a month with no other symptoms. The symptoms were very mild like a cold and gone very quickly.

[madisongrrl]

Originally Posted by Healthgirl

He said there are some strange things that can happen from mold and not to rule that out.
I showed him the 2 case reports of the peripheral neuropathy caused by Giardia and he thinks I should stop the cholestyramine and do 10 days of Flagyl.
I am terrified of taking this, but he said if we do have a parasite, it will not go away with out treatment and that people can have Giardia for years..

I guess if I were in your shoes, I'd just have them treat for Giardia. And if it's another parasite besides Giardia, hopefully the Flagyl makes a noticeable impact. You are getting closer to answers, even if it doesn't feel like it.

I did not take any tests for parasites, they are just assuming I have some and are treating with Ivermectin.

[Healthgirl]

Originally Posted by madisongrrl

I guess if I were in your shoes, I'd just have them treat for Giardia. And if it's another parasite besides Giardia, hopefully the Flagyl makes a noticeable impact. You are getting closer to answers, even if it doesn't feel like it.

I did not take any tests for parasites, they are just assuming I have some and are treating with Ivermectin.

You are so brave.
It's like trouble shooting with heavy duty drugs that can wipeout what defenses we have left to see if they can kill the bad boys.

I am so overwhelmed. As you know there are so very many antibiotics, antifungals, anti parasitic, and antiviral drugs out there. It's not like one thing will cover all bases and on top of that.... some things require 10 days, 2 weeks, or months to work and if you stop it too soon it won't be enough to wipe it out and I don't know what else to do....

[onebeed]

Originally Posted by Healthgirl

My lyme test was negative. Just two positive igg strands showed up and the infectious disease dr wanted to try the doxy just as a protective measure in case it was an undetectable strain. He said I should have had a big improvement by the end of 3 weeks (which I didn't at all).

Also, being that my 2 daughters developed the livedo reticularis rash with in weeks of me getting it, I started to give up on the lyme idea because that would have meant that we had all been bitten with in a similar time frame and thought the chances of that were pretty slim. I don't know what to think anymore. Some pathogen or toxin obviously got into us and I don't know what to do. Doctors are too busy to try to put this puzzle together.

Did you have the Western Blot test? Which bands were positive?

Per my LLMD, if you have any of these bands positive, he considers it positive for Lyme (quoted from my doctor):

"In my clinical experience, if a patient has symptoms suspicious for borreliosis, and has one or more of the following bands, there is a very high probability the patient has borreliosis.

These bands are 18, 22, 23-25, 28, 30, 31, 34, 37, 39, 41, 83, and 93.

[---- from DR C's update from 2005 ---
----The significant antibodies, in my opinion, are the 18, 23-25, 28, 30, 31, 34, 39, 58, 66 and 93.----]"

If you had any of these bands positive, I would strongly advise getting an LLMD.