Difficult decision to make for treatment
 

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.

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.

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.

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

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.

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. :hug:
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....:Head-Spin:

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.

Read the old posts from LizaJane about Lyme disease testing, about how to get a proper test and how bad the standard tests are for detecting Lyme. And the importance of having a Lyme literate MD. She is the one who convinced me to get a proper test. Otherwise I would have gone to the Infectious Disease doctor that my GP tried to send me to and I would have fallen through the cracks. Infectious Disease doctors are clueless about Lyme as is most of the medical community.

Have you noticed a huge improvement after the lyme treatment?

I think it was 41 and 66 but only igg (not igm)

I would recommend the test from Igenex. It is more sensitive. They are a tick specialty lab.

I haven't noticed a huge improvement yet but I believe I have been sick for more than 40 years. It takes a long time to treat chronic Lyme. I haven't been on treatment long enough yet plus you have to take different antibiotics to kill all the different forms of Lyme. I have only taken a couple so far. I have noticed some improvement, yes. It is better than no treatment at all. There has been some improvement in the neuropathy and my jaw feels better. Plus I have yet to treat the co-infections that usually come along with Lyme.

If you do have Lyme, the doxycycline causes some of the Lyme spirochetes to change form into cyst form. They do that to evade antibiotics. When you stop antibiotics, they change back into spirochetes and re-infect you. You have to take a cyst buster like Flagyl or tindamax or grapefruit seed extract in addition to the doxy.

I would be worth getting the Igenex test just to rule out Lyme so you don't have to worry about it.

Hi Healthgirl
Im a bit confused. You say your going to a functional md who is treating you for mycotoxins with cholestyramine. What is that and how did you find out that you have this? And what is Giardia? Do your Doctor(s) think these "infections or viruses" are causing your neuropathy?
Thought I would chime in on the Lymes...I still can not get some kind of accurate Dx for my sfn..My Rheumatologist did bldwork, she said 3 bands came back showing lymes (I think thats how she means it). She said 3 "infected" bands are not considered lymes , I would have to have 5 bands for the CDC to consider treatment for lymes. I also have one sightly low Subclass 3 IGg. She wants to retest me in 3-6 mos. Does any of this make any sense to you?
I'm sorry your feeling overwhelmed, I know that feeling all to well.

I'm sorry but that is incorrect. Read the book "Cure Unknown" by Pam Weintraub and "Why Can't I Get Better" by Richard Horowitz. Also go to lymenet.org. They can explain it a lot better than I can. What 3 bands were reactive?

Also, my peripheral neuropathy is quite severe. One of the numbers on my skin bunch biopsy was 0.9. It is going to take a long time to grow back those nerves, if at all. I am not sure if the damage was permanent but at least I can keep it from getting worse.

I am very confusing and confused too.;)
As I still have not found the cause for my neuropathy, I haven't given up and every once in a while, I make an appointment to see a new specialist with my test results and what ever research I can present. I originally went to a lyme dr who wanted to aggressively treat me for bartonella but I was very scared to take so many drugs. Then my kids and I started having an identical vascular rash and it became clear that they also were affected by whatever got to me. Thank God there symptoms are more mild than mine, but they are disturbing and no doctor knows what to do.
I became less convinced of the lyme and thought more along the lines of toxic exposure. Either way-something got to us and I can't give up.
I went to a functional md (knowing) that they usually diagnose mycotoxin or lyme. I did happen to find mold in my old house and being that we are all affected, it made sense to go with the treatment especially because it is very safe and short term. (Cholsestyramine for about a month to "bind to mycotoxins". That's the theory anyway. I am 3 weeks in and have no improvement. In the mean time, I went to a gastrointestinal md and showed him 2 old case reports of people who developed PN from giardia. He thought it would be very worth while to take Flagyl for 10 days to see if it would cure me. I am terrified of this drug however due to the fact that it actually induces PN with in the first few days of taking it for some people.
So that's where I am.

Studies have shown that you can actually pass Lyme & co's on to your children in the womb. Whole families often have Lyme. I know the feeling about being leery of taking so many medications. I am not thrilled about it either. However, I do not want to continue to get sicker.

Dear Heathgirl,

I think you know the score.... Marlene said it first and best....you all can be tested for giardia, and should be, before the prescription of a potentially neurotoxic antibiotic.

There are a wealth of articles on Flagyl causing irreversable PN, including from relatively short-term low doses, in children as well as adults.

I'm doctor-shopping now, sick as I am, because I'm trying to assemble a smart team who understands my disorder. Part of this is the continual search for a possible underlying disorder.....so I think your desire for treatment and your hesitancy about this doc is very justified. The last thing we need is iatrogenic exacerbation of our symptoms.

Best of luck....especially if you must gather multiple stool samples for the three of you!

Sylvie

Thank you for your response onebeed. I'm not sure how to read this lab report. I will try to write what I think is most telling..

lyme serology, serum, reactive cutoff *0.157
lyme serology serum, borderline cutoff 0.124
Lyme serology serum , Interp. Non Reactive
lyme western blot # 2
lyme western blot, IgM serum (a) Indetermin
lyme western blot, IgM bands (Kda), ser *41
lyme western blot , IgG serum (a) Indetermin
lyme western blot, IgG Bands(Kda), ser *18.28
lyme western blot serum comment lyme western

This is what is listed under Immunology/Infectious Disease. Rhuemy says I have 3 "Reactive bands"..as she said I would need (5) to be treated for lymes. Note: I never had any symptoms or rashes since before or after I developed this nasty sfn.. Now I'm more confused :confused:
I will check out the (2) books you mentioned. Ty!!
Sorry if I hi-jacked your thread Healthgirl.

Onebeed, I'm Sorry your PN is severe. My numbers on my skin punch biopsy, according to the Neuro, were "mild" ... My pain and symptoms are anything but mild!..
Lft Calf 4.70
Lft thigh 12.44
No amyloid is detected by the congo red stain.
No evidence of vasculitis or other histological abnormalities
It is good to read you say "It is going to take a long time to grow back nerves"..It's the closest thing to reading something positive.

I can actually explain this in a general sense.

The current Lyme test that you get in your doctor's office was constructed to be very narrow. Why? because it was designed and used for and in a research setting, which means that it was designed in a restrained way so it wouldn't accidentally pull people into the study who don't have cases of Lyme.

What does this mean? In an attempt to not accidentally pull in people who don't have Lyme, they are inherently missing cases of Lyme. This test is accurate 50% of the time - this an average of 3 institutions/publications that looked at the accuracy of the Elisa test. It's really all where they decide to draw the diagnostic line for any given condition in medicine and they didn't do a very good job with this topic.

How does this happen? It's a very circular logic. The Infectious Disease docs study people with positive western blots and an EM (bullseye) rash. They don't include symptoms outside that narrow criteria. So the people who don't test positive on the Western Blot and don't have a EM rash are not included in these studies. It all goes in this tight nit circle and many of us are standing outside, looking in at this and are shaking our heads. This is so maddening. The broad based studies that would include many of us who have neuropathy and other so called non-traditional Lyme symptoms have not been done. There is not much money or research in this area of medicine.

How does this work? These tests do not directly test for Lyme. They test for your immune system's response to Lyme, so in that sense they are very indirect. You can have a negative Elisa/Western Blot if your immune system is compromised. Some people will have that first negative test, then receive antibiotic treatment and their second test will come up positive because their immune system was able to regroup and reactivate to this bug. If their antibodies are tied up due to the high antigen load and there is nothing left to float around in the serum, they will get that negative result on the Western Blot.

What does this Elisa test work best for? Acute, stereotypical Lyme infections. If you have one of those, fantastic. You will probably be treated promptly and recover quickly.

If you are on this message board, you have some type of neuropathy. And if you are really trying to figure out if Lyme played a part in your neuropathy, you already fall outside of that tight nit, narrow criteria and that typical Elisa/Western Blot test you get at your doctor's office will likely be negative, even if you might have Lyme. That is why it is important to use a different test to truly rule Lyme in or out........the pros and cons of alternative tests are a whole other can of worms.

These are great books for people interested, but they might be a little bit intense for some. I will try to link to some podcasts with both of these authors so people can listen to the cliff note versions. But it will have to happen on another day; gotta get back to my work laptop....the joy's of working from home mean that you are always working. :(

Dr. Horowitz posted a link to this horrifying story on his Facebook page. A man with Lyme was misdiagnosed with ALS. His response to a course of antibiotics for strep throat was the clue as to the true problem.

http://www.nbc12.com/story/31177866/...ally-had-lyme#

_____

I don't think these books are too intense. They helped me make an informed decision about where to go for testing and treatment. I find it tragic when I read about so many people being told by their doctors they don't have Lyme when they are lighting up two or three bands on their western blots. People are on here looking for answers. They usually don't listen when you tell them their doctors are misinformed. Getting enough information can help.

Lymes & confused
 

Onebeed , do you mean two or three bands on western blots like what I wrote in my post? My Rhuemy said I had 3 "infected" bands but the Center for Disease Control says you have to have 5 bands to be treated for Lymes, she came right out and said I do not have Lymes Disease. I suffer with SFN , lots of painful sensations. I do not think I ever had any Lymes symptoms from the very beginning. I'm so confused. I believe my doctor(s) are not sure and confused too.

I sent you a private message.

Ty I sent you a PM too. I hope you see it. Im not sure if Im doing it correctly.

Podcast
 

Dr. Richard Horowitz on Lyme Ninja Radio podcast:

http://lymeninja.com/richard-horowitz/


Pamela Weintraub on the Katina Makris podcast:

https://katinamakris.wordpress.com/2...ght-radio-911/