On thing I have noticed in my 2.5 years of treatment, I don't seem to respond to anything! I never really notice a herx to medication other than maybe after this recent treatment with Rifampin. Maybe it is just a rough period?
Anyway, I notice that nothing seems to cause a reaction or change in my body. I recall when I bought bee venom and went through the tube in less than a week like it was nothing. No reaction or anything!
I just received a bottle of BioPure Quintessence which is supposed to be a strong mix of Bhuner herbs. I am supposed to start with 1 drop a day for four days and build from there. I took 10 frops the first day, and doubt I will notice anything. I bet I could down the entire bottle and nothing!
Anytime I have gotten pain pills, does nothing. I tried vicodin and the first few doses made me feel loopy but no pain killing. I then took 2 or 3 at once and no reastion at all....as if I only drank some water!
I am fairly used to it by now, nothing seems to make a dent in my system.
[ 11-11-2010, 08:12 AM: Message edited by: richedie ]
Posted by lou (Member # 81) on :
But does it help your symptoms? Are you saying it doesn't help or you don't herx?
Posted by richedie (Member # 14689) on :
never seem to get better....
Posted by seekhelp (Member # 15067) on :
Could you not really have TBIs?
Posted by Wolfed Out (Member # 23727) on :
TBI = Traumatic Brain Injury?
I don't really know, buddy. But, I'm think more recently that the view of Lyme disease being multi-dimensional is true.
I can see your list of hard antibiotics. If you haven't made any progress on them, have you tried anything in the direction of Fungal, Parasitic, or Candida?
How well are you detoxing, and do you exercise?
Posted by seekhelp (Member # 15067) on :
TBI - tick born illness
Posted by TerryK (Member # 8552) on :
The fact that you don't get much if any benefit from pain meds may indicate that you have a problem processing drugs.
Have you talked to your lyme doctor about it? Do you respond to any drugs or herbs for other treatments?
Seems like you may have a fast metabolism from what you wrote in another thread awhile back. Maybe that has something to do with it?
Terry I'm not a doctor
Posted by METALLlC BLUE (Member # 6628) on :
Are you using any type of steroids?
Posted by richedie (Member # 14689) on :
Why would my doctor give me steroids when I am fighting infections, of course I am not on steroids.
Yes, I have a very, very fast metabolism. Only thing my doctor had me on outside of abx, was Nystatin for candida. Have not worked on parasites. I am tempted to try another doctor with another approach. There is a doctor near me who only treats with diflucan. Maybe that works.
There are a few more docs near me who are more comprehensive with testing for nutirtional deficiencies, etc.
TBI? Well, I saw about 25-30 others doctors who ruled out what they could. I DO have MGUS as many people with chronic infections have. My oncologist said he sees these symptoms in people with MGUS and might suggest cell targeted chemotherapy.
I did have swallowing problems that went away and air hunger.....
My doctor thinks my biggest problem is bartonella and I have only been on rifampin for two months so maybe I need to be patient.
Maybe Bikram Yoga could cure me. Been hearing great things.
I have thae same foot pain and arm pain as when started. I exercise often.
I don't believe in detox other than exercise and food.
Posted by bcb1200 (Member # 25745) on :
What are your symptoms?
Posted by wgshuckers (Member # 27869) on :
I know what you mean Rich. I feel the same way. My symptoms wax and wane no matter what stage I'm at in meds and herbs. I just can't tell what's a herx and what's just a flare.
Posted by TerryK (Member # 8552) on :
I'm very sorry that you don't feel better.
Perhaps a place to begin is to get blood levels of a few of the abx that you are taking to see if they are in the target range?
You might want to check out the table of contents to see if anything looks helpful here: http://tinyurl.com/28qdaoq
cytochrome P450 and chapter 7 "Factors Affecting drug metabolism" look like they might be useful.
Rich wrote: I don't believe in detox other than exercise and food.
If not making progress, you might re-think this belief or at least try a few things to see if it makes any difference in the way you feel. Dr. S. (Mold warriors) says that you may never feel well if you are a certain genetic type (~25-33% of the population) who cannot make the antibodies to get rid of borrelia toxins.
I have had the testing and I have it and I can attest to the fact that I feel much better when on binders.
Methylation cycle disorders likely impair glutathione production. You need glutathion for detoxification.
Wishing you the best.
Terry I'm not a doctor
Posted by richedie (Member # 14689) on :
Hi Terry,
After seeing a few nutritionists and some other specialists, they claim detox is bogus other than the usual, eat lots of fruits and vegetables, exercise, drink lots of water and maybe sweating via a dry sauna.
However, if you have any products you recoemmend, I will try. any binders, etc????
I too wonder if this detox stuff is bogus. Tough to tell honestly.
Posted by sixgoofykids (Member # 11141) on :
Detox helped me immensely!! Hulda Clark liver cleanses were a HUGE part of what I did after returning from Germany. Also Dr. Natura cleanses, and other detox methods we've talked about on here. Maybe it's bogus to people who are semi-healthy, but Lyme is a very toxic illness and we have to do extra to move out all those toxins.
Anyway, I was going to comment on Quintessence .... I was taking MUCH higher than the dosage on the bottle when I took it. I can't remember what the dosage was, but it was several droppers full.
If you have the problem Terry mentions, you will need something like cholestyramine. Other good binders are chlorella and zeolite. Also charcoal and bentonite clay.
I had more benefit from glutathione. Since I didn't have glutathione IV's available to me, I used the "poor man's gluathione" - whey protein to drink, and coffee enemas. Even my LLMD was supportive on the coffee enemas and actually mentioned them to my friend as being helpful to MANY of his patients. He mentioned this to her when she seemed to not be getting better.
Posted by dsiebenh (Member # 5353) on :
Just to let you know my experience... I was infected for 15 years before Lyme dx. For the first 6 months of treatment I had no reaction at all to any abx. It was various combos of Omnicef, Zithromax and one other abx. LLMD wanted me on IVs, I thought it was premature and wanted Marshall Protocol, with its low dose approach.
Though I think MP was harmful in the long run, one thing it DID do is provoke a "normal" herx. After 1.5 years I could only tolerate 250mg of Zithromax every 10 days, and I was suffering a lot.
By contrast, my initial LLMD had me on 1 gram of Zithromax every day, PLUS another antibiotic, with no reaction at all.
There is plenty bad stuff to say about MP, but it definitely got me on track for normal herxes and apparently "normal" disease visibility.
It may be that, for whatever reason, your immune system does not recognize the invader.
Posted by Misfit (Member # 26270) on :
Maybe you have a leaky gut that's keeping you from absorbing the meds? Just throwing something out there...
Posted by kday (Member # 22234) on :
quote:Originally posted by seekhelp: I too wonder if this detox stuff is bogus. Tough to tell honestly.
Uhhhh... no
You can attempt to detox, and you can detox.
There is a difference. And if you detox like me, it's extremely easy to tell.
And going back to the OP. If you don't feel anything from massive antibiotics and you aren't feeling better, I don't think you have tick-borne disease. Seems that people around here are too afraid to say that.
That's not to say you aren't sick, but you may be chasing after the wrong thing. Maybe something like Diflucan would help you at this point.
Posted by glm1111 (Member # 16556) on :
Richie,
Maybe trying some antiparasitic herbs could help you. They are inexpensive but very effective. It would be interesting to see if you respond and or herx from them. It's worth a try.
Gael
Posted by onbam (Member # 23758) on :
I didn't improve for a year and a half...then I spent three months on Mepron/Zith and, 5 months after that, nearly got to remission.
I notice babs is the things you haven't treated for...
Posted by Hoosiers51 (Member # 15759) on :
Don't know if this was mentioned above, but check out Low Dose Naltrexone.
I don't feel that I was really a "responder" until I started it. I really believe it is crucial for some.
You could have an immunologist run the tests to see if you have IgG deficiency, in which case you could get IVIG. There are other signs of IGG deficiency though, so maybe you would have to have those to merit doing the testing (like problems with infections in childhood)....not sure.
I consider LDN to be the poor-man's IVIG. Not saying one replaces the other, just saying that they do similar things, which is help a poopy immune system.
Another thing to check out is Transfer Factor for boosting immune response. I can't testify if it's worth the money or not, so I don't heartily recommend it like I do LDN.
The final option coming to my mind would be that you don't have infections contributing to your illness, and there is some other kind of problem like sleep issues, autoimmune, etc etc.
Posted by Hoosiers51 (Member # 15759) on :
Also, when my LLMD thought that GI malabsorption was one of my problems, he told me to take all my medications with food, even if the bottle says not to.
Take it for what it's worth (not medical advice in your specific case). But I think his theory was that my body had a better shot at absorping everything if it was also digesting food.
Posted by Hoosiers51 (Member # 15759) on :
I am NOT an expert at this....
....but I would think in your situation, the way you describe it, your body could be "over-detoxing" things, not under-detoxing. (again, not medical advice)
Because normally, those of us that are toxic and need more detox feel worse on the antibiotics, not "feel nothing."
You could try taking the meds with food if you haven't, but other than that, I'd bet it's either your immune system is wonky, or you ARE killing and you are just a fabulous detoxer so you don't know it (but you'd think you'd see symptom improvement by now), or you just don't have the infections active.
Posted by TerryK (Member # 8552) on :
rich, After re-reading your post and looking at some of your posts in the archives I still don't have a really good idea of the testing you've done or if you are seeing an ILADS trained LLMD.
I'll just throw out some thoughts
If you were responding to other drugs but not drugs specific to lyme and associated infections I would think that lyme was likely not your problem however that is not exactly the case from what I've been able to gather.
I'm referring to these comments: "Anytime I have gotten pain pills, does nothing. I tried vicodin and the first few doses made me feel loopy but no pain killing. I then took 2 or 3 at once and no reastion at all....as if I only drank some water!
I am fairly used to it by now, nothing seems to make a dent in my system."
I would want to know if I was able to get a theraputic blood level of meds in my system. Seems like it would be useful to have your ability to metabolize drugs evaluated. Your progress may be slow or non-existent due to non-theraputic levels of drugs.
Rich wrote: I did have swallowing problems that went away and air hunger.....
I think you said you have been in treatment for a few years? I had been sick for decades and was very sick. It took me several years to notice much improvement. My swallowing problem was one of the few symptoms that improved in the first few years of treatment.
I think you were saying that the air hunger and swallowing problems can be symptoms of MGUS. Not surprising if MGUS is caused by infection. MGUS seems to indicate that you have infection but which one? Are there infections that have been linked to MGUS? If so, I'd look carefully at those.
I tried to go back and look at your lyme test results but all I could find was that you had all negative results through quest. I don't think they report individual bands so that is not very helpful. Later you said you were getting more testing but I couldn't find test results. Did you ever have any bands specific to borrelia?
I see you had a positive chylamidia p result. Have you checked cpnhelp.org to see if you fit better with that infection?
Is your doctor ILADS trained? Have you been tested for viruses? How about testing for heavy metals since they are listed in ILADS guidelines as mimicking lyme and are to be included in a differential diagnosis?
I looked at the link you gave for detox. I have found that ground vegetables + lemon (with just a little rind) and lime in a base of green and white tea helps the hissing in my ears which I associate with toxins.
There are many different types of detox depending on your specific problems. It would be hard to know which type of detox if any might work for you since I'm not sure of your history and all your symptoms + seems like you might not get a lot of benefit if you are having problems metaboliizing drugs/herbs. If you want to try detox perhaps the ground vegetables (likely work as a binder), coffee enema, FIR sauna might be useful? They are the few that probably don't need a lot of metabolizing in order to help.
Personally, at this point I would concentrate on making sure I can appropriately metabolize drugs/herbs. If you haven't already, I'd find an ILADS trained LLMD who is known for being very thourough with differential diagnosis and who will clinically diagnose and treat possible infections.
You might not have hit your infection with the right drug yet so if you find that you are metabolizing drugs appropriately, I'd start looking at other drugs and adding detox along with testing for viruses, heavy metals and anything else that looks like it fits.
All that said, I'm not a doctor and I don't know all the details of your case but I wanted to offer suggestions based on what I know of your situation.
I understand your frustration. Many in my family are sick and I'm trying to pin down exactly what is causing it. I have several significant borrelia bands but my 2 sisters, my mom and by brother who are all sick with similar symptoms have negative tests (testing doesn't show all bands for everyone though). Are they truly negative or false negative? They did not get treatment and my sister who is 15 months older than I am just died after 10+ years of suffering. The last few years were horrible.
What is the real answer? I don't know. I do know that I wasted years on treatments that yielded only partial results and I got sicker. I would get aggressive in looking for answers if I felt dissatisfied with my progress.
Best wishes for answers and faster progress Terry
Posted by richedie (Member # 14689) on :
quote:Originally posted by glm1111: Richie,
Maybe trying some antiparasitic herbs could help you. They are inexpensive but very effective. It would be interesting to see if you respond and or herx from them. It's worth a try.
Gael
Hi Gael,
Which ones?????
Posted by richedie (Member # 14689) on :
So which anti parrastic herbs to try???????????
Immunologist? In the last 3 years I could not find an Immunologist anywhere in the Philadelphia area! None!
I have MGUS pretty bad so if I am not feeling better by summer I am having my oncologist give me chemotherapy.
Terry, I see an ILADS trained LLMD in Baltimore who knows Dr. B very well and trained under him.
My oncologist says just about any infection or virus can kick of MGUS and he said he would bet many Lyme patients have MGUS. I am not so sure I believe in the Igenex tests any longer because a friend of mine was tested and had a positive FISH test as did his wife. His wife had no symptoms at all.
My doc says it's important to take Rifampin on an empty stomach.
Me? My Igenex Lyme was positive IGG and negative IGM but my doctor thinks it was positive due to all the indeterminant bands. My Fish test for Babs was positive the three times I took it.
Posted by glm1111 (Member # 16556) on :
The antiparasitic herbs I have done are
Humaworm,
Hulda Clark,
Hanna Kroeger
and am currently doing Parastroy. I liked them all, Humaworm suggests doing their herbs for 30 days with a 90 day break and doing their in between herbs.
I found that the in between herbs were not strong enough and taking a break was a big mistake. Buhner says that the parasites do not become resistant to the herbs which I found out on my own.
Parastroy says to take them for 6 mos with a one month break which I find to be working. I buy them at Vitacost and 1 kit is $12. I usually order 2 at a time. Anyway, I think it might be beneficial for you to try. I know how frustrating this disease can be.
Gael
Posted by richedie (Member # 14689) on :
Gail, is it better to order Humaworm or try the Parastroy???? I'll try whatever...
Maybe I should try Bikram Yoga as they claim to cure all Lyme symptoms.
Maybe its my diet. I eat a lot of food and lots of carbs. Examples of some of what I had today, three large salads, huge bowl of organic gluten free slow cooked oatmeal, organic red skin potatoes with organic eggs and turkey bacon, one apple, orange, lots of veggies, Chinese food for lunch, chicken, brocolli, spinach, grilled chicken and teryaki, string beans. Tonight I made pancakes from almond flour, organic oats, flax seed, protein powder, cinnamon and some organic raw honey. Lots of filtered water too!
Posted by glm1111 (Member # 16556) on :
Sorry Rich, I got sidetracked with something. Humaworm and Hulda Clark seem to be the most expensive however, the herbs in the Parastroy are the same quality and I like the fact that they have HCL and enzymes included.
Rich, I am looking at your diet and wondering if you eat that much because you are a big guy or are you that hungry? Don't think your diet is causing the symptoms and pain you have described.
Don't know anything about the Yoga, but will look it up. I would definitely try the Parastroy. Just remember that one month is not enough and in order to see results you have to stay on them for a while.
Keep us posted,
Gael
Posted by richedie (Member # 14689) on :
Gael,
I will order the Parastroy. I will order a few boxes and mention to my doctor.
I am 6'3" and a little over 200 lbs. All of my life I have been very active and have had a fast metabolism and being into bodybuilding, and pushing myself in the gym definitely adds to my appetite.
Maybe I should look into the liver cleanses as well.
Posted by nefferdun (Member # 20157) on :
I have found when I treat one infections with others remaining unrecognized, it allows those untreated infections to take over.
So if you are only treating one thing at a time, like bartonella, it could allow the babs or lyme to take over. That could be one reason you do not fee better.
Also lyme is constantly changing it's outer protein coat so your immune system does recognize it as a pathogen to attack. It is said to make itself a "moving target". That could be another reason.
From what I understand Diflucan is effective against lyme driving it out of the cyst form so it can then be destroyed by another drug. I don't believe it is effective against co-infections.
You might try something to boost your immune system like LDN or IV glutathione.
But if you have not made progress you probably need to see another LLMD, one that has treated a lot of patients successfully over a long period of time. In other words, one of the icons on the cutting edge of treatment.
Don't get too discourage. Just make a change.
Posted by glm1111 (Member # 16556) on :
Richie,
Good luck with the Parastroy. I really hope you get some results. Drink plenty of water with it. Let us know how you do,
Gael
Posted by Tammy N. (Member # 26835) on :
Just another thought to toss into the mix.....
Check out article below on KPU. Apparently it has been key in Dr. K's ability to finally help his patients. I've only heard good things.....
I am meeting with my doc next week, and will insist that I get tested.
Wishing you well, Tammy
** edited out doctor's name **
[ 11-14-2010, 02:23 PM: Message edited by: sixgoofykids ]
Posted by FYRECRACKER (Member # 28568) on :
quote:Originally posted by kday:
quote:Originally posted by seekhelp: I too wonder if this detox stuff is bogus. Tough to tell honestly.
Uhhhh... no
You can attempt to detox, and you can detox.
There is a difference. And if you detox like me, it's extremely easy to tell.
And going back to the OP. If you don't feel anything from massive antibiotics and you aren't feeling better, I don't think you have tick-borne disease. Seems that people around here are too afraid to say that.
That's not to say you aren't sick, but you may be chasing after the wrong thing. Maybe something like Diflucan would help you at this point.
I agree that detox is important. Yes, there are bogus products and plans out there to detox that I don't buy into. You have to change your diet and add the right supplements.
Not sure if it would help you and of course everyone's systems are different. I was put on 10 days of diflucan before ever being put on abx, followed by 2 weeks of betonite and chlorella. I added psyllium seed powder to the mix because i believe that helps things move better.
I tell you what, I felt AMAZING on Diflucan. I had enough energy to work 36 hours in a week and not feel like crap. If you haven't given Diflucan a try.. maybe try a few days of it?
Posted by Hoosiers51 (Member # 15759) on :
If you type "Philadelphia immunologist" into Google, a bunch come up.
Or, if you don't want to see another doctor, just have your LLMD check your IgG subclasses. You probably don't need to see an immunologist anyways. It is more of a "rule out" thing. But I would rule out IgG subclass problems.
Otherwise, take Low Dose Naltrexone if you don't already. Your LLMD can prescribe it. You need to have it called into a compounding pharmacy. www.lowdosenaltrexone.org for info, doses, etc.
I don't understand why people are telling you to detox, because you are saying you aren't responding to the meds in any way. That means you are probably a good detoxer. Even healthy people will normally feel worse on meds. So the fact that you feel nothing different means your body is handling what you are doing fine, and the treatment is just not working for some reason.
Posted by sammy (Member # 13952) on :
richedie, I find your post very interesting. I also do not respond to some meds like others do. This has been a problem when I've needed anesthetics and analgesics. I seem to process them too quickly and need much higher doses before I feel any of the theraputic effects.
Because of this I've had to have tests and procedures done without meds because the doctors were afraid to give higher than normal doses. I seem to tolerate antibiotics well but have always wondered if I might also process them too quickly.
It scares me to think that someday I might need major surgery and the meds might not work. Doctors think I'm exaggerating and don't believe me until they administer meds and see that I am truly awake and aware.
I never thought to tell my LLMD any of this. He will probably think that I'm silly. I don't know what kind of tests can be done to find out more.
This is probably a genetic problem. I remember a medical study (wish I had kept it) done a couple years ago that showed a certain percentage of fair skinned people with blue eyes and light blond hair (no brown strands) need higher doses of anesthetics and analgesics. It also reported that if those fair, blue eye, blond people had any red strands in their hair that they were even more likely to have these problems. This study stood out in my mind because I have those physical characteristics. Maybe I didn't keep it because I didn't want it to be true.
Posted by wtl (Member # 19883) on :
I am marking down this thread to read later. It sounds very much like my wife's case that nothing has worked.
Posted by richedie (Member # 14689) on :
The first LLMD I saw put me on Diflucan. I stayed on it for three months and noticed nothing. When looking for an Immunologist in the Philly area, the best I found were asthma and allergy experts. My doc didn't seem to interested in the KPU thing. I'll mention again. So what exactly is Low Dose Naltrexone? Why do I need it? How do I ask my doctor for it?
I believe I said earlier, I did notice I got a little worse on Rifampin, BUT I have had long stretches of bad times before so who knows.
I must respond to something. I mean I have had multiple surgeries and I never had issues with anesthesia. I also was able to get my Vit. D levels up taking Vitamin D supplements. When I first took Vicadin, I felt high as a kite, then again for a few times after but eventually built a tolerance to where taking more than the recoemmended does, did nothing.
But herxing? Not sure I notice.
All I know is my feet are still on fire, especially the soles, my upper back kills me and my left arm hurts like heck, even to the touch! Posted by keltyl (Member # 14050) on :
Need to come back to this post, but ditto for me too richedie.
Posted by richedie (Member # 14689) on :
So I am not alone.
Posted by wtl (Member # 19883) on :
quote:Originally posted by Hoosiers51: I don't understand why people are telling you to detox, because you are saying you aren't responding to the meds in any way. That means you are probably a good detoxer. Even healthy people will normally feel worse on meds. So the fact that you feel nothing different means your body is handling what you are doing fine, and the treatment is just not working for some reason.
Hoosiers - that's an interesting point. By the same logic, do you think if one does not respond to meds, one is unlikely to have detox issue, therefore, no problem with toxic and heavy metals? That certainly is not the case for my wife. She does not respond to any antibiotic so far, and she does test for multiple heavy metals. Confusing as hell..
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