I saw my LLMD yesterday and he felt that after four months of treatment, I should be doing better than I am. I'm still bordering on bedridden, still can't climb stairs on my own and basically feel like CRAP.
As we talked, he feels that my problem could be that I'm in that 30 percent that have some genotype something or other that makes it hard for my body to detox, no matter what I do. So he's running lots of lab work, with a focus on this HLA-Genotype test.
I was wondering if anyone is familar with any of this, since I'm not sure I've found anything about it here. For detoxing in these four months, I've been doing the green teas, lemon water, lots of plain water, chlorella, milk thistle, saunas, steam baths, hot tubs.... and most recently, the professional colonics.
I'm at a loss as to what else to do. He's had me stop my cipro and stay on just the minocycline and Zhang.
The lab work won't be back for 2 to 3 weeks so I'm in waiting mode, but wondering if this is familar to anyone and what I can be doing to get out of this hole while I wait for more lab work to return.
Thanks for any and all suggestions.
Cathy
Posted by Beverly (Member # 1271) on :
Hi tdtid,
I'm sorry you are having a difficult time.
My son and I have not had any of that type of specific testing to my knowledge, but we both have had a very hard time trying to detox. One product that helped my son and I was a herbal supplment called Liver Tone.
It sounds like you have a wonderful doctor and you are doing all the right things, maybe it will just take you a little longer to see results? I wish I could be more helpful.
I hope you feel better soon.
Posted by Jill E. (Member # 9121) on :
The genetic issue is covered in the book Mold Warriors and also there was an article in the recent issue of Public Health alert. PM me if you need more info.
This is an issue I keep bringing up with my LLMD because it concerns me greatly. Detoxing of even the mildest form makes me very sick. I can't even touch chlorella, spirulina, any of that. Even the detox foot pads made me sick.
That's great that you are having the HLA tests.Maybe you need to reduce the amount of detoxing - you might be overwhelming your body's ability to remove toxins. You're doing a lot at once.
Jill
Posted by SForsgren (Member # 7686) on :
Get the book Mold Warriors and read it. It covers HLA and biotoxin illnesses expertly. I have heard it said that the neurotoxins may cause 15 times the symptoms as the bugs themselves. It is an important part of treatment to have appropriate binders on board to help with the neurotoxins.
Posted by mississippilyme (Member # 11205) on :
Hello Cathy,
I am sorry you are sick. I hope you will soon find the help you need to start feeling better.
I initially took activated charcoal with extra virgin olive oil to bind the toxins and carry them out the intestines. I also used unpasteurized honey with apple cider vinegar.
This made me feel somewhat better. My LLMD suggested Detox Max Plus, this gets rid of the metal toxins. I felt a drastic difference after using this the first time.
I know everyone is different and react differently to treatments. This is what worked for me. I also had been bed ridden for over a year. This was the first time I felt like getting up and stopped throwing up.
Those toxins can really make you sick. I think I was more sick from the toxins than my borreliosis.
You continue searching for the thing that helps you with detoxing and I'm sure you will find the start to recovery and a more meaningful life.
I pray you get some relief soon. I know this is hard.
Sherry Posted by tdtid (Member # 10276) on :
Thank you all for your imput. Jill, I did PM you and noticed that you and Steve are both on the same path and respect both of your opinions.
As far as what my plan of action is, is to wait to get the test results and then my LLMD said he would be adding some new meds depending on the results. I think one started with a Q but figured I'd worry about it when he gets the results.
Basically I was writing to find out if anyone had even heard of such a thing and I guess I got my answer since it's mentioned in this "Mold Warrier". Thanks for the paths and support.
Cathy
Posted by Health (Member # 6034) on :
Hello,
Please let me know what your LLMD finds out with you. I have not heard of people having a genetic problem with detoxing.
This sounds like me. I heard though or read that some have a high germ load, and have to go slow. If this is the case, maybe that is you?
Do you have MCS, Multiple Chemical Sensitivity? I have this.
How long have you had lyme? I know others who have had lyme as long as I, and can tolerate high dose antibiotics and handle the detoxing. I cannot,
if the detox is too high, I get worse, and worse.
ALSO, I had to start off with 1/3 a cap a day of the Babesia treatment, the Clindamycin and quinine. I worked my way up to the higher dosage.
Could it be that it is just because some of us have a high germ load and have had lyme a long time? I dont know. I am herxing, I am always herxing, maybe
this is it, maybe I have a genetic problem with detoxing, I will look into this, hope I can hear back from you.
Please let me know,
Thanks,
Trish
Posted by Jill E. (Member # 9121) on :
Hi Cathy,
I just PMd a reply, but forgot to mention that the brand name for cholestyramine is Questran, so that's probably the Q name you were seeking. It's an old-fashioned cholesterol medication that is being used by some Lyme/mold practitioners to bind the neurotoxins and help remove them from the GI tract.
Jill
Posted by tdtid (Member # 10276) on :
Trish,
I hadn't heard of this type of problem with detoxing although I THOUGHT I had read these boards pretty consistently since my diagnosis four months ago. But apparently there are others that are aware of it, so it will be interesting to see what my LLMD comes up with on it.
I know he has done others since he talked about the results coming back with several pages and everything looked like just a bunch of letters and numbers, but that it took him a long time to figure out how to even read the results, but now that he's done so many, he can do it quite quickly.
As far as how long I had been misdiagnosed, it was four years, but that was the time frame that things started getting crazy enough that I actually went to a doctor. In hindsight, I had symptoms that I could find all sorts of excuses for to not need a doctor.
In regards to MCS, I have never officially been diagnosed with it, but had so many reactions and problems with medications they used to try to mask problems before the diagnosis and have been through allergy tests saying all these things I was allergic to, but no, never been called "MCS" per se.
I'll make sure I post when I get my results and what I find out.
Jill, yes, actually that med sounds like it HAS to be the one that stuck in my brain. It makes sense. So since you are on it, are you saying it's probably going to take more than just that? I honestly didn't take it all that seriously when my LLMD started talking about it since it was just testing he wanted to do and heck, I'm USE to all these negative results after five years...so didn't take everything in.
But I figured I would find info on it on lymenet when I got home, but didn't do well with a search, which is why I wondered if it was something many have been through. Time will tell.
Thanks again for all the information and I'll keep it posted.
Cathy
Posted by Jill E. (Member # 9121) on :
Hi Cathy,
I just contacted you privately, but if you search for Cholestyramine, you might find some topics about it.
The Mold Warriors protocol uses cholestyramine, Actos (a diabetes drug but it's to try to prevent the herx-like immune system reaction from the cholestyramine) and maybe some other things. I didn't use the Actos because my internist and I felt it would drop my blood sugar too much. I've had to ramp up slowly on cholestyramine and I'm not taking it as many times a day as I need to.
When you read Mold Warriors, it will talk about MSH-deficient people (it's all very complex), and my symptoms are much like that. Yet the MSH medication is not available in the U.S. due to FDA non-approval. So it's not like there is a perfect solution to genetic issues.
But I have emailed with some Lyme patients who have improved on cholestyramine, and others who have gotten worse.
Cholestyramine comes in either the formulation with sugar or with artificial sweetener. I just found out it can be compounded without sweeteners or dye. I need to get a prescription to try it that way - I think it might reduce the headache I get from it.
Anyway, the whole purpose of cholestyramine is to try to bind neurotoxins (whether from Lyme, mold or other sources) and get them out of the body.
Many Lyme patients use chlorella, chitosan, apple pectin, psyllium, bentonite, and other supplements for this. I can't tolerate chlorella.
Jill
Posted by Littlesprout (Member # 7406) on :
RE: MCS - this may be the icing on the cake. What is around you house, like flooring, etc. I just had to remove my Pergo floors (very toxic), had oil base paint in kitchen, and fiberglass front door. No wonder I couldn't get over the lyme. Also, you may have a genetic detox problem. Genomics test is good test to see if you have a problem. Also if you don't sweat, that is a big sign of MCS/detox problems Good Luck
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