I have been ill for over three years and in treatment for over 2.5 years. Three different LLMDS, orals the entire time, currently have my second PICC line infusing IV meds along with orals.
Currently with the famous Dr. H in NY. In my phone consult with them earlier this morning, they now have pulled me off ALL antibiotics, due to lack of improvement (I have been on IV meds for 4 months so far this go-round). I am keeping the PICC line in, though, in case they need to reinstitute IV meds in the near future. They want to focus heavily on detox over the next 2-4 weeks...IV glutathione daily (although I have been doing it twice weekly for the past three months, with no improvement), Pekana drawing formulas, Welchol, etc.
My biggest problems are brain-related...severe brain fog, short and long term memory problems, brain "shocks" (or whatever the heck they are) EVERY SINGLE NIGHT when trying to fall asleep for the past three years, etc. I've never really ever had much joint pain and/or fatigue. They seem to think that detox may be my problem. I'm not so sure that I agree. Although, I have to admit, I never really focused all that much on detox (just occasional lemon water, welchol, etc. over several months during the past three years...)quite honestly, it seems like a lot of snake oil to me. After all, if you have bugs in your house, you spray them with Raid to kill them, you don't offer them song and dance to get rid of them!
Question for you guys...has anyone been ill for as long as I have, with severe brain issues, where detox proved to be the ticket to wellness/remission for you, when years of antibiotics did not do much?
Like I said earlier, I am REALLY skeptical of this whole thing...and would love to hear even a few folks where it has worked. Honestly, I am REALLY afraid to go off of the meds to opt solely for some detox protocol of herbs, etc.
Thanks in advance for your comments!
~tri
Posted by seekhelp (Member # 15067) on :
I'm not sure on the detox issue. I'm sure some will say yes, some no. Like I said in a previous post, I really feel you may be barking up the wrong tree and chasing the wrong thing. I am NOT a doctor of course.
I would take heed to what Gael has said many, many, many times: parasites. When you swing the same tool and it doesn't work, time to see what new tools exist. I personally don't believe most infections could wirhstand the multitude of drugs you threw at it. It's more likely whatever is the culprit laughts because the drugs used have no effect on them.
All that said, I'm sure good detoxing protocols don't hurt. Best of luck.
Posted by Maya12 (Member # 36392) on :
Hey tri , have you ever been tested for kpu or heavy metals or treated either? Those along with parasites ?
My llnd says you can not get better without treating heavy metals and parasites.
The heavy metals protect everything and encourage yeast.
My aunt who has had Lyme for over 30 years has made great improvements with just chelation over 1.5 yrs and is now just treating Lyme with lazer treatments and truly says she is better than she has ever been
I will be starting chelation in feb myself
Posted by cozynana (Member # 34270) on :
I would say that detox has saved my life. Also would say that treating parasites was a biggie. Getting everything you can to get ick out your body.
Posted by cozynana (Member # 34270) on :
I would say that detox has saved my life. Also would say that treating parasites was a biggie. Getting everything you can to get ick out your body.
Posted by RC1 (Member # 31923) on :
Detox is huge, especially if you cannot detox Lyme or Mold. I have the bad genes for both.
My biggest improvements came after I started Cholestrymine (CSM). I also feel that if we didn't get rid of the mold in my house I wouldn't have been able to keep the gains that I made.
I am on abx and have been while I was doing CSM. I have had a number of relapses of a of the infections. Right now I have a Lyme relapse, but it doesn't even compare to when I had active Lyme without CSM.
I just switched to Welchol from CSM, it is way easier because it's pills. This is the stuff right here, either or. If you are off abx it will be easy for you to do the 6 caps a day.
Best to you
Posted by hopeful4 (Member # 8486) on :
There is so much at interplay with Lyme and cos. I also had severe brain fog and cognitive problems. What helped the most for me at the time was eliminating candida, and taking CSM (Cholestyramine).
I noticed improvement rather soon, however, it did not fully "cure" the brain problems. Continued treatment with ABX and supportive therapies like supplements and dietary changes also played a role.
In addition, fatigue and tired brain issues continued to plague me. Recently I have gone to a higher, better level of functioning by addressing MTHFR genetic mutation (helps with detoxing), and low dose of Cortef to support my adrenals. It's made a big difference for the better.
Hang in there, it takes awhile. Best wishes for your health.
Posted by glm1111 (Member # 16556) on :
I may have read the wrong info as to what Dr. said this at the recent ILADS conference, (thought it was Dr.H.).
This Dr. was stating that the NUMBER 1 co-infection is PARASITES!! Can't understand why this is being ignored by even the so called best LLMDs.
At this juncture, I think it's inexcusable. I treated for 4 yrs with abx including 6 mos of IV Rocephin and was still sick.
If you want to get well and stop spinning your wheels, look into treating for parasites and maybe even find a Dr. that is trained by Dr. K. and does ART testing.
ALL the detox in the world does no good if you still have an active parasite infection.
Gael
Posted by MichaelTampa (Member # 24868) on :
Of course detox works if that's what you need. Many of us need that. It's not going to be the sole answer if you need more (such as parasite treatments). Curious why the doc would try more of the same thing that hasn't been working.
Posted by lax mom (Member # 38743) on :
Detoxing isn't snake oil.
I am a person who genetically cannot detox. That's what the 4-3-53 means- I cannot detox mold and Lyme toxins.
You are detoxing your body, not detoxing for the bug's benefit.
Detoxing will make it where you can better tolerate treatment.
You can't keep piling on the meds, kill and kill and kill the bugs and just leave everything in your body and expect to get well.
Maybe you feel so badly because you haven't been focusing enough on detox.
I wouldn't be here either if I didn't detox.
I am low in Glutathione in the cells (Labs proved it) so, Glutathione helps me immensely.
I know their office only does IV, but I am currently doing nebulized Glut 2-3x daily and it helps my brain more than anything. (My LLNP says it's because there is no blood brain barrier in the nose).
P.S. Their "flare protocol", is a list of detox methods.
Gael: Yes he stated that parasites are the #1 co, but unfortunately they still rely on testing to treat.
Posted by glm1111 (Member # 16556) on :
If he was the dr that made that statement and has a patient not responding to tx with abx, it is beyond my comprehension that he wouldn't try antiparasitics even with a negative test. We all know about negative Lyme results, and it's the same for parasite testing.
Myself and several others on the board have tested negative for parasites over the years and were LOADED with parasites. I don't get it!
P. S.
If you're not killing the right bugs or parasites, there is nothing to detox because you are just dealing with active infections that you have to kill.
Don't get me wrong, I am all for detoxing, but you have to have something to detox whether it's bb, parasites, fungus, molds etc.
Gael
Posted by MichaelTampa (Member # 24868) on :
quote:Originally posted by lax mom: Gael: Yes he stated that parasites are the #1 co, but unfortunately they still rely on testing to treat.
Uggh!
Posted by MichaelTampa (Member # 24868) on :
quote:Originally posted by glm1111: If you're not killing the right bugs or parasites, there is nothing to detox because you are just dealing with active infections that you have to kill.
Don't get me wrong, I am all for detoxing, but you have to have something to detox whether it's bb, parasites, fungus, molds etc.
Gael
I don't think this is quite right. I believe the bugs make neurotoxins just as part of their life processes, and some of the illness is our body's reaction to these neurotoxins. And then of course there are the heavy metals. Certainly, there will be MORE to detox once the killing begins, but working on this can help, even if one is caught in the duldrums of not really treating the actual bugs/infection.
Posted by glm1111 (Member # 16556) on :
Well, okay Michael, I hear what your saying, but I really doubt that just detoxing neurotoxins is gonna make you well. How do I know? I use to detox a lot, not really getting anywhere until I started going after the infections.
Again, I am not saying not to detox, but you have a lot more to detox when the pathogens are dying, otherwise, they are just circulating and reproducing. To each his own I guess.
Gael
Posted by RC1 (Member # 31923) on :
I have lived this the same way you have lived parasites. It might not make you well, but it gave me an extra 30% or so.
Not that I am denying the parasite thing, I have 2 boxes of Parastroy just waiting to go to war I just don't have enough time in the day between abx, supplements, probiotics, and Welchol to start it.
Posted by lax mom (Member # 38743) on :
quote:Originally posted by glm1111: If he was the dr that made that statement and has a patient not responding to tx with abx, it is beyond my comprehension that he wouldn't try antiparasitics even with a negative test. We all know about negative Lyme results, and it's the same for parasite testing.
Gael: I was in that same boat, not getting better, etc. I told them that I had parasites after my Humaworm experiment. I was told to have the Metametrix GI effects stool analysis done.
I didn't waste my money.
I think we have to be grateful for the expertise this Dr provides. Then we need to be our own advocate and have an additional provider (ex. ND or ART practitioner) to take care of the parasites, etc.
Posted by MannaMe (Member # 33330) on :
My husband is rifing for babesia.
This afternoon he felt really miserable.
After a foot detox he felt better - felt it helps clear out the toxins.
Posted by Linnada (Member # 24302) on :
I agree with Maya, you have to focus on detox in order to get well. It is NOT snake oil.
I took years of antibiotics even with your current doctor with only some improvement.
I focused on this among other things and it's finally getting me well.
I found an integrative clinic and I treated for parasites and fungal sinusitis.
These are the things I also did for detox in conjuction with those treatments: colonics, enemas, dry skin brushing, gallbladder flushes, saunas, microsilica, coffee enemas, green smoothies, and I'm getting ready to start an intestinal cleanse.
I am at 90% right now and everyday gets better.
Posted by Maya12 (Member # 36392) on :
Hey guys do you do this detox while off meds or while on them?
Posted by lax mom (Member # 38743) on :
Maya: I detox while on meds and when taking an antibiotic break.
Posted by MichaelTampa (Member # 24868) on :
quote:Originally posted by glm1111: Well, okay Michael, I hear what your saying, but I really doubt that just detoxing neurotoxins is gonna make you well. How do I know? I use to detox a lot, not really getting anywhere until I started going after the infections.
Again, I am not saying not to detox, but you have a lot more to detox when the pathogens are dying, otherwise, they are just circulating and reproducing. To each his own I guess.
Gael
I agree with you, JUST detoxing isn't going to be close to enough with these chronic infections.
Posted by annxyzz (Member # 20404) on :
I hate to sound negative, but taking "binders" has never made me feel one bit better . This is just my experience . Also , I agree with tackling parasites. If you take oodles of ABX and are still sick ( or other drugs like mepron ) then it does seem to reason that you are not attacking the REAL enemy that plagues you . I close with the assertion that I do not know much, but I do not theink most doctors know much about lyme either .
Posted by Catgirl (Member # 31149) on :
Gael, this doc is in NY. They are pushed against the wall (it's not their fault). The medical board hit all the NY docs recently. They have strict regulations on what they can and cannot treat. They are even limited on certain tests (they cannot order them).
People who live in NY can help to change this. Our president said it best (recently). Congress doesn't know what you want or will fight for until you tell them. All it takes is an email to let them and your state legislators know how you feel. The more, the better. It's the only way things are going to change, IMO. Emails are so easy.
Posted by glm1111 (Member # 16556) on :
Oh wow, that's ashame for ALL concerned! Understandable why they won't treat without a positive test.
Wonder if they would still be liable if they advised their patients to try some alternatives for parasites such as herbs or salt/c?
Gael
Posted by Maya12 (Member # 36392) on :
well this is very intersting , i was just talking with my aunt who has had lyme for 30 years and has been treating with an llnd for the past 2 years,
this llnd seems to follow klinghardt and i think knows him and he has had her doing just heavy metal detox and parasite treatment for the last 2 years.
she has not yet even treated for lyme or cos and says she is better than she has been ever
so if it was the lyme and cos making her so sick than how come she is so much better with only parasite treatment and heavy metal chelation
this really makes me think for those of us only getting worse on abx that we really aren't reating the right disease at all.
just some food for thought
Posted by Catgirl (Member # 31149) on :
Maya, I've had lyme for most of my life. I didn't even recognize it. I just thought I was tired from a days work. Most docs and patients would miss the subtle symptoms. It grew ever so slowly in me and wasn't even a recognizable problem to me until I was bit many more times. So you can see how it's easy to miss. I think it can turn into auto immune if left untreated though.
Parasite treatment hits babs too. Babesia is not something to ignore. Maybe your aunt doesn't have babs, or maybe the parasite treatment helped to some extent (dunno)? I think anyone would feel better without metal or parasites in them. Dr. K is ahead of the pack here, IMO.
Posted by Catgirl (Member # 31149) on :
Gael, I just tell them what I'm doing (taking) each time I go in (required). They've never had a problem with anything I've taken. They're great in that they have the mentality that they learn more from their patients than anywhere else. I don't know about suggesting things though (liability).
Posted by glm1111 (Member # 16556) on :
That's great to hear, but what about someone who doesn't have a clue that they may be infected with parasites? They may be liable, don't know, but it's an omission that can be life threatening if left untreated.
Not only that, they and other LLMD's are tx with many abx that are targeting the wrong infections and ultimately depressing the immune system. It's a conundrum for sure, not to mention scary. (sigh)
Gael
Posted by triathletelymie (Member # 26456) on :
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I just don't have enough time in the day between abx, supplements, probiotics, and Welchol to start it.