posted
I'm getting really desperate with this situation, it feels like a dead-end whatever I try.
It is obvious that my detoxification just doesnt work because I cant take either chemical or natural abx without severe consequences and problems. I think what happens when I take them is that they start killing the bugs but the body cant handle the toxins produced by the those bugs > liver cant get rid of them > more toxins in the bloodstream > toxins go to the brain and wherever they want > symptoms get only worse. I took a test which showed that I have severe problem with glutatione production, in fact it seems that my body produces it very little because the whole GSTM-1 gene is missing.
Last summer I tried several times a couple of macrolides (Biaxin, Roxy) and I got so bad symptoms even with minimal dosages that I simply had to stop them soon after starting them. Now please understand that I'm not talking about some mild discomfort or herx but so bad symptoms that you really want to end your life. In my case those symptoms were: constant torturous, excruciating burning pain all over the body and crushing depression/anxiety/going mad feelings.
Some days ago I tried a natural abx as an injection and that causes the very same thing. Even taking the stuff orally now seems to have the same result. I must be overloaded with the toxins.
I already tried Nanotek chitosan but it made it worse. Chlorella also makes me very sick. Any ideas what could I try next? Are some of you in a similar situation?
Thanks
-------------------- Please dont suggest "ask your LLMD" because we dont have them here in this country... I just have to count on you fellow patients. Posts: 246 | From Finland | Registered: Dec 2006
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Rianna
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posted
I would suggest getting the 5-part HLA inherited gene marker test from LabCorp (test 012542)This 5-part HLA test is able to determine how well you can remove the dangerous biotoxins.
Then perhaps see if you can consult with Dr S by phone as an international patient as this is his specialist subject - he states: No one should be treated with antibiotics unless it is known how able they are at removing Lyme's biotoxins. Further, one often hears that the treatment for those who have biotoxin damage is simply the use of cholestyramine, an old cholesterol medication with broad biotoxins binding abilities. Unfortunately, in reality, by the time most patients with the 15-6-51 pattern or the 16-5-51 pattern get to my office, they have had these biotoxins disrupting many body systems and my interventions need to be equally as complete, after these individuals are physically repaired from biotoxin damage, they then require very tailored and carefully paced Lyme treatment along with treatment for their co-infections.
treepatrol
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posted
What are the types of antibiotics you have tryed?
Have you tryed any anti virals first?
You must have some sort of coinfection that is causing the burning sensations when on abx's?
I know my herxs are terrible most people on here would have went to the hospital in the beginning I felt so bad that herx cycle was continual. My best advise is lots of water and sweat if you can ? And get b12 shots they have really helped reduce my pain level? Why not sure but i think its helping body deal with toxins.
I also take magnesium,cq10,complex b vitamin,daily vitamin.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
tdtid
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posted
I have to agree with Rianna. I was having a horrid horrid time with the detoxing no matter what I tried. My LLMD ran some testing and found I had certain genetic markers that meant I was just one of the "lucky ones?????" that can't detox the way most people can.
My body just couldn't do it. But as far as recommending what you CAN do, my doctor said it is totally dependant on which markers show up. I've always known I run towards constipation, but didn't realize until this marker test, just how much we had to focus on that angle so I'm now doing colonics, coffee enema's and taking occasional laxatives.
I don't like it at all, but my test came back pretty bad as far as what other options I could even use. So see if you can get the test done and atleast then you will know what you are up against.
I thought something was definitely wrong with me becuase I would read all the detoxing info on here and wonder why I was getting sicker and sicker. The test explained a lot.
Good luck and let us know how it goes.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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Maybe it would be helpful if you fixed that organ with whatever method available prior to trying the next ABX (pharma or natural).
There is a lot of useful info on detoxing your liver in Dr.Sandra Cabot's book.
You might also want to try herbs for the liver. I can tell you from personal experience, if taken in sufficient quantity, they can open up your body's elimination pathways noticeably.
Posts: 655 | From USA | Registered: Sep 2007
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treepatrol
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Liver,Kidneys,sweating skin,and sinus's.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
David95928
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posted
This may not be helpful at all as I tolerate antibiotics well. However, I consistently feel better when I use a sauna frequently, preferably daily, and receive a deep massage at least every other week. Both of these activities tend to remove toxins and are also pleasant. Dave
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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klutzo
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Dear Barton, I have the same problem with toxins. My holistic doc and my TCM doc both said that from their testing of me, they think it is my major problem in fact, and is causing most of my symptoms, rather than the Lyme itself.
In fact, they feel it preceeded my Lyme, and made me susceptible to it in the first place. I am a "canary in the coal mine", a life long walking toxic dump site for all the chemicals, pollutants, etc. of modern society, so it's no wonder I became sick.
Both docs felt herxing to the point of releasing too many of these toxins was far more harmful to me than not doing so, and felt I should take it much slower. Of course, they are both biased, believing terrain to be more important than germs in determining illness.
Vitamin C is the cheapest way to raise gluathione, but can upset many delicate stomachs, and is not absorbed orally beyond a certain point (about 160 mgs. daily for most people), a fact many supplement sellers do not disclose, for obvious reasons. Vit. C IV's have risks, and I know of one person who died and one who is on dialysis as a result of them.
You can raise both glutathione and growth hormone dramatically by taking 600 mgs. NAC daily, along with 2-5 grams (as tolerated)* of L-glutamine powder mixed in water on an empty stomach each morning. Wait 30 mins. before eating. It can also help heal the stomach lining, if you have any problems there like I do.
*When you reach the dose of L-Glutamine that is more than you personally need, it converts to Glutamate in your brain. This will make the problem worse and you will feel awful, very foggy, nauseated, anorexic and flu-like. You do NOT want this.
Back down to 1/2 gram below that dose until the bad feelings stop to avoid this problem. You only want to replace the amount of glutamine you are deficient in. For me ,the correct dose of L-glutamine turned out to be 3 grams daily.
I also found that raising the dosage of chlorella VERY slowly made it possible for me to use it, whereas it made me deathly ill when I took it the way most people do. It took about 3 months to work up to the normal dosage.
The Dr. S recommended by Rianna above is very near where I live, and while he knows a lot about HLA genotypes and toxins, you may have to sell your first born child to afford him. If you have plenty of cash, I agree it may be a great idea to consult him.
However, he is outrageously expensive and charges $9 per minute for phone consults, the length of which he reserves the right to determine, and they are all quite long. In your case, you would also have the International Long Distance rates to deal with.
I do not see Dr. S. This info came to me from a Lyme friend with toxin problems verified by HLA testing, who saw him for a short time, then switched to a regular LLMD (Dr. S. is a Psychiatrist), since she did not want to go bankrupt. She also felt he was primarily interested in research, not people.
Have I totally solved this toxin problem? Heck no! Along with the L-glutamine, I also had to adjust the dosage of my herbal ABX (Samento) downward to fit my personal tolerance for toxin elimination.
Even the makers of Samento say you should not herx! They say dosage should be adjusted to one drop below one's personal herxing level, because herxing causes organ damage.
At least I can function this way, and though I may be removing toxins far slower than others, it's better than nothing. Just my opinions, and I know others will disagree.
I have another Lyme friend with the toxin problem, verified by the HLA tests, who is doing the methylation protocol to try and fix it so she can eliminate toxins normally, though I admit I don't understand how that would work. You may want to look into it....
Best of luck to you,
Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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posted
Thanks for all the responses. Some questions and comments:
This LabCorp test is very interesting and important. Does anyone know if it can be ordered internationally and do I need a doctor to order it? Have you maybe done it Rianna?
Treepatrol, I have tried only macrolide antibiotic, Biaxin which made me very sick and Rulid (roxithromycin) which made me supersick. I havent tried any anti-virals.
Yes I might have a co-infection, according to some biomeridian tests I have bartonella, erlichia and maybe mycoplasma, too. But doesnt borrelia cause this kind of burning too? I have takent those vitamins and minerals, tried some b12 shots too, without much benefit.
Yep liver is the major detox organ but if the problem is genetic (like I have) it cant be fixed. Liver either produces enough glutathione or not. I might be wrong but thats how I understand it anyway. I have taken milk thistle for a year.
David do you use a regular sauna? I have one in my apartment but havent noticed much difference. Havent tried infrared sauna yet though.
Thanks again
-------------------- Please dont suggest "ask your LLMD" because we dont have them here in this country... I just have to count on you fellow patients. Posts: 246 | From Finland | Registered: Dec 2006
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posted
Thanks for this info Klutzo. Well I guess I can forget about that testing then, a disabled person hardly can afford such a thing.
NAC seems to make my symptoms worse (burning skin especially) but that l-glutamine is new thing to me. I might try that.
I have tried chlorella maybe a couple of times, took 5 pills or so and they made me ache all over. Did you start with 1 pill only?
I suppose you dont tolerate any chemical abx either then?
-------------------- Please dont suggest "ask your LLMD" because we dont have them here in this country... I just have to count on you fellow patients. Posts: 246 | From Finland | Registered: Dec 2006
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CaliforniaLyme
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posted
The detox stuff was not even in existance on the older Lyme boards and people still got well. In my experience it has been a trend in treatment and people got better before it came along. It is not a universal thing with Lyme treatment, on many boards that are Lyme related it will never even come up. Please don't flame me peoples, this is my true experience. This is not to say it doesn't help some people a lot!! It is to say some people may not need it at all, because I know full remission people before it became trendy who never did it and got well just fine.
Sincerely, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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David95928
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Barton, I just use the sauna at my health club. My massage therapist is very strong and always massages toward the heart. Afterward, he encourages me to drink plenty of water.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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SForsgren
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quote:Originally posted by CaliforniaLyme: The detox stuff was not even in existance on the older Lyme boards and people still got well. In my experience it has been a trend in treatment and people got better before it came along. It is not a universal thing with Lyme treatment, on many boards that are Lyme related it will never even come up. Please don't flame me peoples, this is my true experience. This is not to say it doesn't help some people a lot!! It is to say some people may not need it at all, because I know full remission people before it became trendy who never did it and got well just fine.
Sincerely, Sarah
The work of Dr. S. from biotoxin.info is pretty solid around the need for detoxification.
BTW, ~25% of people have mold or Lyme genotypes that make them poor detoxifiers.
So, likely then and now, 25% of the population has a significant need to incorporate detoxification and binding interventions for biotoxins. If you happen to be in the 75% that don't have these mutations, recovery may be less difficult.
Note: My speculation is that of the chronically ill people with LD, the 25% is much higher (ie. population vs. chronic Lyme disease patients).
Note: Metal detox is a different topic and my opinion is that many more than 25% need that.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
Same experience here too -- my body seems to be rejecting my efforts to detox. Like I just vomited up the milk thistle attempt this week. Seems the only thing I have passed so far is to sit in a bath with Epsom salts and sweat.
Posts: 13116 | From San Francisco | Registered: May 2006
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SForsgren
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posted
BTW, for certain genetic types, Epsom salt baths can be absolutely the wrong thing to do.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
A Biomeridian machine is not foolproof in diagnosing Lyme and co-infections. You almost assuredly have Lyme if you have the others.
Trying to use detoxifiers to get well without killing the infections is like trying to shovel the snow off of your driveway when it's still snowing. The infections are producing toxins continually.
Even if you have to go slow with antibiotics, I believe that it is the way to go. Just set goals for yourself to increase them to effective levels at a tolerable rate, even though it will be difficult.
A portable steam sauna is affordable ($200-$300) and effective for helping with detox. Every 4 days is enough. Kirkman makes a good transdermal glutathione cream that will help too. Exercise is a must for detox. Get a cheap rebounder or treadmill and do it everyday. Diet is another key element for detox. Cooked and raw veggies will give you good nutrition and help to clear toxins out of your colon.
It's also just as important to stay away from foods that will contribute to your toxic load like alcohol, candy, chocolates, deserts (ice cream too).
-------------------- You're only a failure when you stop trying. Posts: 945 | From U.S | Registered: Oct 2004
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CherylSue
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How I can relate to herxing and detox! Both my LLMD and my naturopath doctor say that is a problem with me that keeps me from feeling better.
Nutramedix burbur does help. ProBoost does help. Hot tubs work. I just joined a health club for one month so I can use their sauna, whirlpool, and pool. Sweating does help.
Thanks ScottF for mentioning that some people cannot tolerate Epsom Salt baths. I took one once and felt just awful. I could barely get out of the tub. Bentonite Clay footbaths make me feel ill, too.
CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
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Clarissa
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posted
Rianna's right on the money as far as my experience has gone.
Get the LabCorp test done and see if you have those genetic markers. I'm one of the 25% "lucky" ones...yup...and guess what, BOTH my parents have it, too. 15-6-51. That gene will be the death of me.
I've been on Cholestyramine for 4 mos and am s-l-o-w-l-y getting better. The progress is being slowed down because I'm also treating Bart at the same time.
tdtid
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Member # 10276
posted
My husband and I both have lyme as do two of our children. My husband can eat anything, he has never done ANYTHING to detox and just takes his abx and carries on.
On the other hand, I am on the most strict yeast diet I could ever be on, I can't detox no matter what I do and even though my liver lab work reads that it's in normal range, I was tested and came up extremely positive for that genetic aspect of not being able to detox like a "normal person".
So although I do believe that many can get better without doing a thing, there are some that have a different make up or chemistry that takes it totally out of our control.
I'm not even saying that is your problem Barton, but I do know that in my case, until we started taking steps to find out what avenues I COULD respond to, I was going deeper and deeper into a hole.
Just my own two cents. It depends on each individual but I think what Rianna is trying to say is that there IS a test to check this when things aren't progressing the way they should. I do know it's a small percent that test positive, but if you are one of them...it does make a difference.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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klutzo
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Hi Barton, To answer your questions to me:
1. I started with one tablet of chlorella every other day for a whole week, then went to one tab a day for about three weeks, then I added one more tab at another time of day for a whole week, then added a third one at another time of day, backing down if I got sick or alternating every other day until I felt I could raise it again. I eventually worked up to 5 tabs, 3 times per day.
2. I had bad reactions to several ABX, so I had skin testing done by an Allergist to make sure it was not herxing, and it was confirmed that I am allergic to all classes of ABX except fluroquinolones.
Lyme altered my immune system, making me strongly Th2 dominant, and I was "allergic to everything" by the time I was corectly dx'd four yrs. ago.
I've been sick for 22 years, and have had zero conventional ABX. In some ways, I seem to be much worse off than many people here, but in other areas, I seem to be doing much better than many people on ABX. We are all different, that's for sure.
For example, I can do a 70 minute workout including weight lifting and aerobics 3 X weekly with no problem at all. I could do it even more often, but don't have time. I worked up to this even more slowly than with the chlorella.
On the other hand, for an example of the bad stuff, I have a heart rhythm problem that has made me afraid to drive anymore in case it happens while I am driving, since I have a 30% chance of blacking out if it happens. In Florida, where you must drive to do anything at all, this has made me almost totally housebound.
Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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klutzo
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Cathy or Rianna, Do either of you know how much Dr. S is charging to see him now to get the test ordered? How much does he charge for the genetic testing?
I would love to know if my TCM doc is right that toxin excretion is my biggest problem, but the prices I heard from someone I know who went to Dr. S. were totally out of reach for someone on disabilty like me.
Thanks in advance for the info, Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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lymeHerx001
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Barton same thing happened to me. Terrible burning and suicidal thoughts and vertigo!!!!!!!!
I stuck through a little bit and then pulsed them and then I was doing a sauna when my sinuses got ruined in the sauna!!!!!!
Now I have chronic vertigo and dry sinuses from the antibiotics and toxins. SUCKS.
Im taking chlorella now.
Posts: 2905 | From New England | Registered: Sep 2004
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sparkle7
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posted
If the doctor in FL suggests Cholestyramine for people who have "bad" genetic markers - why pay a hung amount of $$ to see him (or even bother with the tests if you can't afford it - we know who we are). That's pretty standard for absorbing toxins. Have you tried that, Barton?
I have been in pain for 10 years. I take oxycontin & vicodin to survive (I actually hate taking drugs but it's very hard to deal with chronic pain). So, this is how Lyme has affected me. I found that if I get a vigorous massage, I end up in bed for 3 days. Saunas also produce pain for me but I try to do them anyway since I think it is killing the spirochetes. I haven't been able to "work out" for probably over 7 years. Way too much pain. I do try to walk & do light stuff.
It's funny how it effects us all differently... I'm probably one of the people who can't detox well. So, we have to find alternatives.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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Rianna
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[QUOTE]Originally posted by klutzo: [QB] Cathy or Rianna, Do either of you know how much Dr. S is charging to see him now to get the test ordered? How much does he charge for the genetic testing?
You do not need to go to Dr S for this test as your LLMD can get this run from Labcorp and then you can be treated accordingly - Perhaps call Dr S office to see his charges if you need his guidance.
Rianna
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posted
[QUOTE]Originally posted by sparkle7: [QB] If the doctor in FL suggests Cholestyramine for people who have "bad" genetic markers - why pay a hung amount of $$ to see him
My understanding is you may not only need Cholestyramine, you may need to implement additional nutracuticals depending on what shows in your tests.
BARTONFINK: I am unsure how you send blood to the US from your country, here we fedex overnight to the lab - peraps give labcorp a call and get there advice
minoucat
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posted
I thought I knew a lot about detox, but I've found out that I don't, and no one really does.
The liver detox/metals/toxin absorption stuff mentioned above is valid, but for many people it's a small part of the story.
A Lymie friend had done "all" the detox stuff -- colonics, massive amounts of classic liver and heavy metals detox, including DMPS, glutathione, chlorella, cholestyramine, and so on.
In despair, she recently began working with a ND who looks at much finer (cellular) levels of detox using the kind of genetic testing pioneered by Amy Yasko.
According to these and some other tests, she was extremely high in sulfur and ammonia, and very low in vitamin B and iodine (which she had been supplementing with for years).
Her ND feels (based on the results of the genetic tests) that her body is unable to process out sulfur and ammonia at the cellular level and that she has other problems with the methylation cycle. Because of this the MSM, glutathione, and methylcobalamine she'd been faithfully taking were the worst possible things for her.
These problems, inherent but intensified by LD, probably have exacerbated her difficulties in processing and eliminating abx, and also in eliminating toxins produced by LD/Co and candida.
Having spent years and years on the LD treadmill without significant improvement, she was skeptical but desperate and followed the ND's plan: low protein diet (for a short period, to reduce ammonia production), low sulfur diet (part of which was to eliminate high sulfur foods like garlic and onion), switch to hydroxy B12, do clay baths, chlorella under specific circumstances, and some other stuff.
She has liver detox problems too, but her ND felt that until she dealt with the other, more basic cellular-level stuff, addressing the liver detox issues would not lead to noticeable improvement.
Her LLMD is keeping her treatment at a minimum until she's through with the initial detox, and is working with the ND to find out what kind of treatment she can tolerate long term.
For the record, she has tried abx and rife with limited success -- the die off, and possibly reaction to the meds themselves, have been too much for her.
You never can tell with LD -- many of us have had those mysterious times of improvement that fade away like fog -- but so far, after 3 months, it's going extremely well for her. Much better than she had hoped for, certainly. If this continues we'll be pretty sure it's the new protocol that's doing it.
She's feeling much more clear headed and energetic than she has in many years, and I was really impressed by the changes in her the last time I saw her.
My point isn't that everyone should immediately go on low-sulfur, ammonia-eliminating protocol.
It's that we THINK we know a lot more than we actually do. We're only beginning to know how the body works at a cellular level when it's healthy, let alone how it works and what is disrupted by a disease like LD.
It's unlikely that anyone on this board has exhausted all the detox protocols; it's much more likely that what you need is still out there for you, if you can find it.
clairenotes
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posted
It has been my feeling for a long time that we are only scratching the surface of possibilities for detox. This discussion has become a nice confirmation of that intuition.
What is new and interesting is that the detox approach may have to be as individual as our lyme killing regimens.
The main difficulty in this case may be in finding the MD or ND who can help in Finland. Perhaps there might be a practitioner in the states who could provide a referral?
Claire
Posts: 1111 | From Colorado | Registered: Oct 2006
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map1131
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posted
Barton, I was the exact same way 3-4 yrs ago. My body couldn't wouldn't detox, abx or anything else I tried to make it do it.
Finally I was introduced to my Russian massage lady that still works on me today. In fact I have an appt in 20 minutes.
This must be short until I get home to finish. Two words for now......lympth drainage.
Be back later.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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Clarissa
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Ironically, I have worse "herxes" after taking the cholestyramine while ridding the biotoxins tha I do with abx herxes.
The abx herxes are totally different so it truly feels like there are two separate "die-offs" going on.
I definitely think the biotoxin theory plays a role in my relapse. My mother, who was also diagnosed with the biotoxin gene started CSM last week.
She's already feeling better! Unbelievable, huh? I have to tend with the Bart so my recovery is taking a detour but she's clear of the Lyme and has no co-infections so she's just ridding herself of the biotoxins.
She said she can, literally feel them being pulled out of in her old Lyme symptom areas: Her left eye, her front right leg, her brain, etc. She's very optimistic and said she didn't realize how badly she felt until she started feeling better.
Sound familiar? lol
She was treated for Lyme almost a decade ago so imagine how long those biotoxins have had to penetrate her tissues?
CherylSue
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posted
My LLMD Dr. C suggest I take Alli for fat soluble toxins. I read the side effects on the package, and it was quite daunting. I will have to give up all fats or else will be running to the bathroom all the time.
Anyone have experience with Alli?
CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
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sparkle7
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posted
Is there any possibility that we aren't really herxing from the Lyme dying but are just having difficulty with the abx or some other reason?
I hope this isn't a dumb question but it did cross my mind. Some people mention that thet have various viruses, etc. Maybe the abx are killing off something other than just the Lyme.
My pain level kept going up even after I stopped taking abx. I have no idea if it's a herx or something else. It's been going on for at least a month.
I have had other situations when they say "you get worse before you get better" - like if you go on Guaifenesin or a candida free diet. I've heard that alot in the natropathic community for various illnesses.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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Rianna
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Any product that will create lipolysis will enable you to desperse the fat from the cell (this is where the toxins can sit)- Alli is not the only way of dispersing fat you can do the obvious weightloss but you can also have 'Electrolipolysis' which is a treatment/machine that stmmulates this process in your body.
Here is a little bit about this process
Electrolipolysis - offers pain-free slimming with the use of self-adhesive electrodes without creating muscle contraction or discomfort by using low voltage currents through non-invasive skin electrodes. The electro-stimulation goes on inside the actual fat cells where triglycerides are changed to free fatty acids so that they can be excreted in tissue fluid and further transported to the lymph vessels. This substance travels out of the fat cells into the lymphatic system and is then excreted by the kidneys as urine.
The Electrolipolysis treatment machine would then use mechanical Lymph Drainage - his makes it possible to drain fluid accumulations in the lymph system without using manual treatment. Lymph drainage is very necessary to the electrolipolysis treatment for getting rid of the free fatty acids.
There are also many people who have problems with the accumulation of fluids in their calves, thighs and arms (oedema) and require lymph drainage. Many overweight people also have poorly functioninglymphatic systems and the problem of sluggish lymph drainage is solved using self-affixing electrodes without pain or discomfort.
A fat cell can increase in volume 400 times. The result is that fat cells compress the vessels in such a way that circulation is greatly reduced. This prevents the normal transport of oxygen and nourishment to the cells and carbon-dioxide and waste products from the cells.
This reduction in circulation causes accumulations of fluid and fat which stagnate in problem areas giving an `orange peel' effect know as cellulite.Electrolipolysis therapy reduces the fat cells so that circulation becomes normalised.
Clarissa
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posted
Sparkle:
Based on my family's experience with Lyme, Bart, Babesia and Candida, going off abx "too early" can cause a lot of pain.
Theory: You're killing spirochetes with the abx, (also building up some yeast) and then yank off the abx before killing is completed.
The spirochetes start partying because they're free to punish you again and/or the Candida symptoms start to kick in punish you for taking the abx in the first place.
OR, like with me, I had the undiagnosed coinfection AND the biotoxin gene so two things were left untreated after my Lyme treatment seemed successful so eventually I relapsed.
This is in laymen terms. If I'm wrong, someone please articulate what you think...but this was the pattern in my family.
Example: My mother was on biaxin/plaquenil combo for a year for Lyme, then went off and was still sick. Her LLMD instructed her togo back on for a few months, then go off and if her symptoms came back, to back on...or to pulse. After 18 mos, she was finally better and did not relapse.
Fast forward 10 years and she has some mild lingering symptoms, got re-tested and she has the biotoxin gene. She started Cholestyramine protocol and is already improving after 2 weeks.
This might be a good question for WildCondor or Tincup but I know there is an explanation for why going off abx too early can keep you sick.
quote:Originally posted by sparkle7: Is there any possibility that we aren't really herxing from the Lyme dying but are just having difficulty with the abx or some other reason?
I hope this isn't a dumb question but it did cross my mind. Some people mention that thet have various viruses, etc. Maybe the abx are killing off something other than just the Lyme.
I feel exactly the same way and no it's not a dumb question.
Since so little is actually known about lyme and how the bacteria works, everything you hear/read or see is assumptions or speculations.
I personally feel that herxing is a little bit of a hoax. I think taking triple doeses of 3-4 diff abx at a time is not a herx, but a toxic overload from meds.
Put any high amount of meds in the body and anyone will feel horrible. When people feel terrible after chemo, why don't they call it herxing?! Because it's not!
I said this is another post, but will say it again, when you take abx for an bacterial infections (lets say sinusitis or bronchitis) one tends to feel better right away, so why doesn't this happen with lyme?!
Yes with chemo one feels worse before better, but bacteria is not cancer.
tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Klutzo,
As with Rianna, I had my genetic testing by a different doctor than Dr. S. My LLMD did it when I was not responding the way he had expected at a certain point.
So I'm sorry that I can't help you as far as what Dr. S charges. But as Rianna said, many doctors are opened to running this test through Labcorp for you and then I imagine it's the cost of whatever the lab is charging.
I don't recall the cost, but know it wasn't anything that made me "CRINGE".
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
You guys can go do a search on here and read Gigi posts about the fact she never experienced the herx stuff that we all talk about. Gigi also did abx, but never in continuence therapy.
Dr K experience with lyme patients treat every single one of his patients according to what their ART and body needs and in what order the body and immune system can handle. Nobody knows like your own body, mind and spirit, how it wants to slowly eliminate lyme & company.
Go back and read about Gigi and her husband that was in a wheel chair. It wasn't a fast voodoo, you are healed experience. It was 5 years I believe of many things and I believe it was even longer for her husband.
She didn't HERX because her body, mind and spirit and Dr K didn't want to do it that way. If someone reading this believes I'm crazy, move on.
If you wonder if Gigi and her husband and Dr K might know what they are doing??? Do a search on some keywords from Gigi.
PS: Sparkle7, to answer you question in your last post. In my honest opinion and experience.....my answer to your post is YES.
All of us are different and dealing with different lyme & company. What works for me and my & company, might not be what is good for your & company. Sparkle7, I did see a muscle testing chiro doc for 2 yrs in Louisville, Ky. He helped me greatly, but he didn't cure me. He was disabled and worked out of his home.
I haven't been to this chiro in 14 months. I will not get into this publicly. I'm looking for a ART practioneer in my city. I found a name from lymenet member in another part of KY. It's on my list of things to do to interview this ART doc to see if he might help me.
If he's a voodoo phoney, God willing I will know.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
I have had this same question burning in my mind recently.
I am going to get the LabCorp genetic marker test done next month, but I already know it's going to tell me I am one of the oh-so-lucky ones predisposed to be unable to rid myself of toxins.
I have tried so many different detox protocols: chlorella, vitamin C, colonics, intestinal cleanses, and the list goes on.
My clue as to why none of this is working is that none of my inflammation receded in the least. I gained 60 pounds in 4 months when I got sick, and I did not lose any weight trying these things.
This is the type of weight gain that Shoemaker and Schaller refer to in their articles as being nearly impossible to lose.
Since the body is unable to get rid of toxins, one of its favorite places to store it is in fat. Oh yay.
But here's where things have changed for me recently. I refused to believe that cholystyramine is my only option for disposing of toxins. I really felt that there has to be another way, even with the haplotypes that say otherwise.
My focus shifted from "detoxing" to reducing inflammation. A bit of semantics I suppose, since both can be considered detoxing.
Here's what I did and what seems in the short run to be working for me. I feel that it is working because I am losing weight. I don't know how much weight yet, because I don't own a scale, but I can see it in my face, people have commented on it, and my clothes are looser and I can fit into clothes I couldn't fit into before.
I am not ready to shout from the rooftops that this really works, since it is still early days, but I am encouraged by what I've seen so far.
1. 20 minutes of Yoga a day. I have to mention this because it has helped reduce inflammation. Also, yoga helps release Growth Hormone, which people who are very sick with Lyme have a hard time producing.
2. This one seems to have given me the best success so far. Awhile back I read a book called Your Body's Many Cries for Water, by a doctor Batmanghelij. I thought I was drinking enough water, but what I didn't realize is that my body was not utilizing the water.
Now we all know how great water is for flushing out the system, but the method described in this book took it to a whole new level. The principle is simple -- drink water and combine it with enough salt so that the water basically turns into a liquid that has the same viscosity as your bodily fluids and can therefore be much better absorbed and used by the cells to flush out toxins.
There's more benefit to this than I mentioned, but there is a lot of info and that's the basics. The recipe I used was to drink half my body weight in ounces each day, and 1/4 teaspoon of good, natural, unrefined sea salt with every quart of water drunk.
Within just a few days of starting this, my insomnia went away, and within a few weeks my fingers stopped swelling up (as much) when I exercised. My urine now comes out dark yellow which means that I am excreting toxins.
I suspect that using this method is really helping me detox. I'v only been doing it for a few weeks, and seen and felt lots of benefits.
3. I re-read this great book called Mastering Leptin, by Byron J. Richards. There is a chapter in the book on "Fibromyalgia", but was incredibly helpful (I just substituted "Lyme" every time I saw Fibro mentioned).
I should back up here and say that my focus has now narrowed down to focusing on my lymphatic system and how to kick start it, since the lymph system is so much involved with immunity and toxin disposal.
I suspect that if I get my lymph up and working, this will really help me detox/reduce inflammation even though I (most likely) have the genetic handicap.
OK, back to the book. One of the ways they (in the book and in their practice) help people with sluggish, sludgy lymph systems is to use a supplement called arabinogalactan. Say it with me three times fast .
Arabinogalactins are found in elderberry and ecinacea, but the type they use are found in the heartwood of pine or larch trees. Arabinomajiggys apparently stimulate the immune system by waking up those sleepy macrophages, our friendly and helpful white blood cells that help with cleanup of debris and other junk as well as pathogens.
I have been taking 2 pills of this twice a day. It seems to be working, but again, I haven't been doing it very long and also since I started taking them at the same time I started doing the water thing, I can't really say which is working (although intuitively I feel they both are working).
I have also ordered, though have not started taking, a supplement that contains quercetin and curcumin, which both apparently turn of NF-Kappa B.
NF-Kappa B is activated in the body when cellular stress occurs. It can get hijacked and start working against the body by creating inflammation.
I am one of those people whose body cannot tolerate a lot of supplements, even if they are really good. I have tried so may of them (I have a giant plastic bin just full of bottles), but the nice thing is I have been able to tolerate the arabinogablahblah stuff very well.
This is why I don't take a lot of stuff. It just makes my inflammation worse because it overloads the body. I am surmising that this, too, might be one of the hallmarks of those who have the genetic type that can't detox.
So I am going to keep on with my plan and see if it keeps working to help me detox and de-inflammationify. Heh - I just made that word up!
I was going to keep this all to myself until I had been doing this longer to have more solid evidence, but I thought I would mention it here since the question was asked.
Cheers,
Alison
--------------------
The obscure we see eventually. The completely obvious, it seems, takes longer. --- Edward R. Murrow Posts: 923 | From California | Registered: Aug 2005
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Interesting & complicated!!!
I just have a feeling that the herx thing isn't really explaining what is going on.
I know some of you do well with abx & I was completely open to it but it just got to a point where I felt it was doing damage. I didn't want to force myself to keep taking them despite the ill effects. My bowels & intestines are in pretty good shape. I didn't want to screw up something that was actually working well for me.
We don't even know if abx actually do kill ALL the spirochetes or if it's the spirochetes that are continuing to make us ill. I read in one study that you can still have pain even after the spirochetes are all dead. There's just no way to get an accurate reading of what is going on during the process. So, to say just stick with the course with abx & deal with the damage later is kind of counter-productive. Especially, if we know some of us can't detox.
Keep the good info flowing! We need to figure this out as individuals & every bit of info can be of use.
I think the lymph info is very useful, too. I found a rebounder someone was throwing away, recently. I'm trying it out...
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
Great info for which I have been desperate.
Any more ideas?
Posts: 233 | From United States | Registered: Oct 2006
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Sparkle, wow I'm thankful I only gained 30 lbs within the first 3 months of lyme & company and abx treatment. I have lost 20 lbs of it since I nixed the abx road and started the alternative road.
I credit my naturopath for making me realize how important water is to the body. One year later I realized how dehydrated my body was when I went for my first visit with muscle testing chiro doc.
I thought I was drinking enough. I wasn't. He had me doing 1 1/2 gallons a day for about 6 mths daily three years ago. Now I only do a gallon a day.
I too dropped weight as the body realized it didn't need to store it because I was going to give it the water it needed. I even did periods of distilled water when I was over toxic and trying to help my body detox.
Distilled water worked for me. I found doing a gallon a day during for 3-5 days during herxing period helped my body mop up the bad guys.
Many on this site say distilled water will also take out much needed minerals from body. I believe that is true also. You need to use outstanding minerals in between this detoxing/distilled water periods.
I found Mt Capra Goat Whey a great way to replenish my body of great nutrients, trace minerals and minerals. I used this goat whey mixed in filtered tap water and treated it like an evening tea. I find this powder form to be tasty as a tea.
Sparkle, good job on your post. The body does store fat around the middle torso to protect itself early on from lyme & company. Many posters have wrote how they are so heavy in the middle of their body at the waistline.
I wonder if the liver, intestines, kidneys, gall bladder, spleen all try to protect themselves against this MEAN enemy???????
My last 10 lbs is going to come off in '08. Hopefully I will be able to use that mini trampoline that is holding the wall up behind me. I'd really like to join that Walker's group on the General thread. Tutu, hiker, please encourage me.
I've tried yoga, walking and mini trampoline in the last 5 yrs. My knees objected and my body would get fatigued. I know Dr B is right and that exercise it key to getting well again.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
This just got brought up at my last appt. so I don't know much.
I mentioned that I think I may have a problem with mold. The doctor said that a percentage of people have a glitch which makes it hard for them to clear mold and lyme toxins out.
He said the problem is at the point where the liver has processed it, but something goes wrong (fuzzy here) with it getting picked up in the intestines.
Since I take piles of supps and meds all day long, cholyresteramine(sp) is on hold for now. I guess it has to be taken often and apart from meds, etc. What he wants me to try is to take in plenty of soluable fiber. It picks up the toxins on it's way thru the intestines.
He said oatmeal and apples are perfect. I'm gluten intolerant, so the oatmeal is out for me. I do make muffins with coconut flour, which is almost entirely soluable fiber.
I posted a question on this board about whether I should eat the fiber apart from the abx. I know it means water soluable, but it looks like when it gets into the intestines, more than just water is absorbed.
Next appt. I may find out more. Maybe the soluable fiber is a stopgap measure, rather than a long term answer.
Posts: 552 | From New Mexico, USA | Registered: May 2007
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I am popping over from the Immune Support board to join in this discussion. Nobody is writing me on my thread over there, and it's a relief to talk about this subject with others who are dealing with it.
I have CFS, and I feel like I must surely have some neurotoxins of some kind. I'd like to expel them.
I am in the exact same boat as you are, Alison. I know there must be something besides cholestyramine that would do that same thing without the side effects.
Last week, I drank part of a "Promise Active Supershot" which contains plant sterols. They are supposed to be the natural equivalent to cholestyramine.
But unfortunately, they have the same side effects! Argh. They made me feel great for about three hours. Then, incredible constipation, and days later, my teeth feel weak and I seem to be low in progesterone.
I'm not willing to risk my teeth to get well. They are a vulnerable area for me.
So thank you a lot for sharing your doctor's suggestion of soluble fiber, Daisys. I am going to try that! It's worth a try, at least.
Do you all talk about Rich Van Konynenburg's simplified methylation protocol on this board? He took Dr. Amy Yasko's ideas and boiled them down to an easy-to-follow plan. I've been doing it for nine months now, and I really like it. It's helping me to gradually detox in a supportive way.
I think soluble fiber might be a perfect complement to the simplified methylation protocol. It would help move out the toxins that methylating better stirs up.
Forebearance
Posts: 2 | From Nebraska | Registered: Jan 2008
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