Topic: why am i still sick after 6 years of treatment??
chroniclymie
Unregistered
posted
why can't we kill these damm bugs. after six years of abx treatment i am now back where i started and can not even walk. when are the going to find help for us chronic people, this really sucks???
trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
docdave, I'm sorry things are so rotten. Since I can't remember... have you addressed all the possible co-infections?
Personally I'm hoping that finally treating Babs that I had from the beginning may be key to making decent progress.
I hope you find something that helps.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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chroniclymie
Unregistered
posted
tested 3 times for coinfections, even did malaria smear for babs and others everything negative. by the way ,when the doctor orders a smear he must specify that it gets read by a hematologist or patholgist and not by the Culter machine as most slides are read. It must be read by a human.
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You said you were tested for coinfections. However, that was not the question.
The question is have you been treated for coinfections? Many LLMD's now treat for many coinfections regardless of test results. Testing here is as bad if not worse than Lyme testing.
Babesia slides only find what is in the bloodstream -- babs has adhesion factors which help it stick to the capillaries -- it is not floating around in the bloodstream to be found on a slide.
Also "bartonella-like" organisms -- no test exists as they don't even have an official name yet.
Can make a huge difference if you have an untreated coinfection.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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TheCrimeOfLyme
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Member # 4019
posted
Coinfections?
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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posted
Has it been 6 years of abx *without any breaks*?
You might consider the approach being advanced at marshallprotocol.com
The MP says it is very difficult to cure infections like Lyme unless you 1) limit vitamin D intake plus light exposure, 2) use pulsed abx doses, and 3) stay on abx continuously for at least 18 months. These items are frequently overlooked in more conventional Lyme treatments. Perhaps it explains your lack of success so far.
Posts: 727 | From USA | Registered: Mar 2006
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5dana8
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Member # 7935
posted
hey Chronivlymie
I am sorry you are still sick and having problems.
Not sure of the all the reasons we can't get rid of all the bugs but think the goal is to reduce the germ load and keep it down.
Lyme is a tough ba@^@rd to beat but it can be beat with the right combination of meds and addressing the co-infections. The test for the co's are as inaccurate as the test for lyme.There are so many strains of babs for example and only blood tests for a couple of them.
I got alot better when I treated my babs and bart even though I did not test positive for bart. Although had all the symptoms.
It took me 6 months IV and 2 years of oral intensive treatments. I mean 3 years non- stop of different abx combinations. And yes the flagel and tindamx worked for me.
I have to say the combination of supps and herbs did also help along with detox methods.
Not sure I will ever be able to use the word "cured" with chronic lyme as I have been sick 20 years but I am much better than when I started.
Herxed like a dog almost the whole time and did want to give up many times along the way but glad I didn't.
Not trying to blow sunhine here but to share how my journey has gone.
In the beginning I would say I was as sick as it gets and didn't think I would ever get to this point.
I still have a ways to go but my quality of life is getting better and I try to never lose hope.
Where there is life there is hope.
Hoping you can find a way back to a quality of life.
Hang in there
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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posted
I completely agree that treating for co-infections is the way to go... especially after such a treatment failure as you describe. The testing is basically useless -- I'd ask for treatment based on symptoms.
Personally, I'd also be wondering about more obscure co-infections -- mycoplasma, stealth viruses, etc. Some folks do really well on antivirals. Have you addressed other confounding issues such as food allergies? Have you tried alternative treamtents, like Rife machines?
What are you doing to build up your immune system???? Are you addressing the ways in which lyme depletes the body, and taking supplements to correct that? ( I swear that is a big part of why I'm feeling so much better these days!) Do you detox along with treatment????
I'm not a doctor, but those are questions I'd be asking if I were in your shoes.
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Because this pathogen...and mycoplasm...do NOT have a LPS cell wall... ALL other pathogens do.
Bb and mycoplasm are UNIQUE.
They use cholesterol (and zinc)...technically speaking Bb has a cell wall, mycoplasm a cell membrane.
We have to hit them from a different angle.
Lower the cholesterol. INactivate HMG CoA reductase WHILE simultaneously INactivating PFK.
Yea it can be done. It's not gonna happen overnight.
It took my sis 3 years of nonstop abx. (along with nutrient supps) to figure out they don't work for this pathogen. You name the abx., she was on it...many multiple times...including the "big guns".
What are abx. and our own antibodies supposed to do when our system is attacked by a bacteria?
Either destroy the cell wall or prevent it from forming in the first place, right?
Well...let's prevent it from forming in the first place.
Now...cell wall deficient. Osmotic pressure changes and/or ultrasound will "finish the job".
This is nothing new...it is the basis of:
"How to lyse a gram negative pathogen"...college notes I found on the internet awhile back.
Bb makes a nice "home" for friends (co-infections)...lots of sugar, fibin to cloak, etc.
IMO, gotta get him first.
When you are ready to explore the alternative paths...
Abx. modulate the immune response..you might FEEL better, but...
Okay...Humira ($$$) to block TNF alpha. Yup, you'll feel better. Weigh that with increased risk of TB and cancer. Next: Foxamax 'cause you have osteoporosis beginning...well, it INCREASES TNF alpha and CRP. Okay...those aren't working so let's ADD to those ($$$)...Mexotrexate which DECREASES already low choline. Now you have major lymphadema and your joints are crippling a lot.
Ready to find another way? We gotta do it...being "forced" to give up longterm abx.
Why do they give one of the cheapest, oldest abx. in the marketplace for the shortest length of time to treat lyme?
Because they know it doesn't work. "Appease them."
The "mindset" is: bacterial infection = antibiotics.
Not THIS bacteria! Once again...very unique!
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
Hi Doc Dave!
I would agree with the coinfection theory. If you are not testing positive to anything, a trial can be done on whatever coinfection best matches your symptoms.
Sometimes, just as with Lyme, the coinfections will only test positive once your immune system has gotten a boost. Once some of the infection is killed off, your immune system is then able to find and recognize it, only then making antibodies.
posted
I have tested negative for coinfections three times. On the experience / advice of others on this site, I talked to me LLMD about treating it. Based upon the symptoms, I started babs treatment -- mepron, biaxin -- and it is making a big difference. I am still very sick, with symptoms that come and go, get better and worse, but I can tell I have babs bcs babs symptoms, particularly profound fatigue / malaise, have gotten better.
So document your symptoms and see a good LLMD. For me the symptoms were profound malaise, sweats, shaking chills, mental fatigue and memory. These have all gotten better -- altho I am also continuing Lyme tx ceftin and flagyl -- so I see progress altho some days I would say who knows what isgoing to happen long term.
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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Jill E.
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Member # 9121
posted
Have you done the Comprehensive Chronic Fatigue Syndrome panels through MDL Labs? It checks for various herpes viruses, Epstein-Barr, Chlamydia Pneumoniae, Mycoplasmas, etc. that obviously can activate in those with challenged immune systems.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Vitamin D raises for several reasons.
1. It protects us from cancer.
2. Vitamin D increases Mg absorption and phosphate absorption.
Your Mg and P levels are low...along with a lot of other imbalances.
Your body is trying to fight.
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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posted
I'm curious as to what abx regimen you've been treated with, as well. I read posts here where some people have been treated only w/one oral abx, like doxycycline, or mino, or tetra. Unfortunately, we don't have an accepted set protocol for this illness yet, so abx therapies are really varied.
I have to agree w/5Dana8, though. I think treatment requires multiple abx at a time. I started w/Bicillin LA 1.2mu weekly plus Ketek 400mg BID. After about 7mos, Ketek switched to tinidazole.
Along the way, I've given myself heat treatments and ozone sauna treatments. I'm considering adding Rife at some time.
I think you have to hit Bb from every direction you can, including alternative therapies. Don't leave any stone unturned.
Be prepared to go through some bad herxes. After one prolonged heat treatment, I could barely walk for almost a month. Every joint in my body ached. I thought I was going to be a cripple for the rest of my life. But I finally started feeling better, and now I'm better than ever.
Tinidazole has helped immensely as well. I'm convinced that if you don't treat w/a cyst buster at some point, you'll never have a chance to get completely well. We have to get rid of those cysts.
I'm sorry it's taken such a long time, and you're still not feeling well. But if you think you haven't been agressive enough with your treatment in the past, you might consider doing more in the future to fight it.
Good Luck,
Patti
Posts: 449 | From Pasadena, CA, usa | Registered: Aug 2005
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AZURE WISH
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Member # 804
posted
If you have been on abx for 6 yrs striaght, I would definetely consider coinfections.
If you have not taken time away from the abx due to complications of one kind or another and you are progressively getting worse - I would probaly find another llmd - especially if he didnt address (and when I say address I mean treat) the coinfections.
Just cuz ya test negative doesnt mean you dont have it.
Foggy
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Member # 1584
posted
Ditto, co-infects & Metals made a big difference for me.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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SForsgren
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Member # 7686
posted
Have you cleaned up:
1) Coinfections 2) Parasites 3) Heavy metals
These are key and antibiotics alone will not lead to recovery from Lyme disease for most people. There are many layers and one has to have a broad focus.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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luvs2ride
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Member # 8090
posted
chroniclymie
I know you have said before that you have a mouthful of metals and that you do not believe they have a thing to do with your illness.
All the same, since you are not responding to conventional treatment, what can it hurt you to clear out these other things that so many doctors say can cause you trouble?
Please don't leave any stone unturned.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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Foggy
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Member # 1584
posted
The metals in the mouth are just part of it. Vocational exposure or even via ingestion is very relevent.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
1. ALL pathogens (bacteria, protozoans, viruses, fungi) are parasites. They take our nutrients or enzymes which come FROM nutrients. They live off of US.
2. Co-infections are an ongoing problem. Bb makes a nice "home" for them. We are exposed to pathogens every second everywhere...countertops, toilet seats, you name it. This will be an ongoing battle UNTIL we rid the system of Bb...the leader of the pack.
3. We are supposed to get rid of the dangerous metals...and we normally do...via bile salts. Rid the dangerous metals? Once again...ongoing exposure. Aluminum is everywhere as is mercury. We must have a healthy liver where bile is made. In lyme, the liver is greatly impacted due to a choline deficiency and ethanol from the fermentation of sugar, etc. We must restore the health of the liver...choline, phosphorus, vitamin E to protect.
4. Bb is UNIQUE. It does NOT have a LPS layer. We have to put the brakes on cholesterol and sugar simultaneously. Antibiotics do NOT do this.
5. 3 years...4 years...5 years...6 years of continuous abx. and not well? That should be a "red flag"...stop and think. Either the antibiotics are not working OR did work and you are now "autoimmune"...still pumping out acidic TNF alpha which further depletes minerals which triggers more TNF alpha... Your body still thinks it is "under attack" because many nutrient levels have taken a big hit. Restoring those levels takes TIME.
So...continue abx. which DO "downregulate" TNF alpha (one acid will downregulate another), but if you STAY too acidic this will eventually lead to DNA damage, cancer.
6. We are supposed to be slightly alkaline. Cancer ONLY happens in an acidic environment.
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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posted
I forgot to mention that in addition to my abx and occasional alternative treatments, I also take the herb andrographis as recommended by Buhner's book.
I try to do anything I can to kill Bb. FYI, I DO inform my LLNP of anything I do, so she's aware and can give her input. Unless she has a problem with it, I do it.
Patti
Posts: 449 | From Pasadena, CA, usa | Registered: Aug 2005
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chroniclymie
Unregistered
posted
Dx in 2000 with high elisa 6.2 and western blot with 9 positve bands. coinfections negative 4 times, heavy metals negative 4 times,rare and exotic diseases negative twice. iv rocephin twice 2000 for 2 months and 2003 for 3 months. po zithromax on and off during these periods along with flagyl, vfend,diflucan. 2006 zithromax no longer effective went to ketek and flagyl, go sick then went to iv claforan for 2 months in march, felt better but insurance refused to pay any longer. returned to zithromax , bad reaction then doxy, bad reaction now this week on flagyl only tommorrow to start zithromax again maybe with small secondary dose of doxy.
i have the unique opportunity of having a llmd that treats me on my terms and fully understands that i know more about lyme than 80% of the people and doctors in the country. these mixing of meds is hopefully going to fingd a regime to treat long term chronic lyme with my body as a guinea pig.Also taking acyclovir for viruses and mycoplasms i did have 2 very good years that i was able to get out of bed and actually play tournament quality tennis, so, i am hoping the future will clear out again.
SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
The odds of negative coinfections are near zero - or possibly zero. Babesia alone may be 70% or higher. You can't continue to rule things out if you are not well unless you have done something to address them. If you do what you've always done, you will get what you've always got.
Negative heavy metals test may be even more concerning. It may mean that your body is not releasing the metals. When testing autistic kids for example, the big challenges are usually the ones that don't show the metals. They are there, just not being released by the body.
I also hear nothing here about what you have done to address parasites. They hold the smaller bugs. You kill the smaller bugs -> they come right back.
It sounds to me like your focus has been too narrowly focused on Lyme and antibiotics and is not a well-rounded plan of attack....
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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JimBoB
Unregistered
posted
I agree with Scott.
Less abx, MORE alternatives. Abx become just about useless after awhile. Try the Hot and Cold method.
If you are not TOO prideful, try Stephen Buhner's Protocol. At least you should FEEL better on his protocol. But don't stray too far from it. Don't listen to too many who say they tried this and tried that and it helped.
I did, and got into trouble. Fortunately things are getting better again. BUT it is scarey to all of a sudden start feeling real bad, and not know why.
You also have to be careful that you are not taking things that are canceling out one another. I have done some of that too.
And some CAN take one thing, but not another, which might be just the opposite of someone else.
Michelle M
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Member # 7200
posted
Dear Doc Dave,
After all these years...
And all these antibiotics...
Will you at least consider a trial of Mepron/Zith/Artemisinin?
I'd bet my hat it will knock you on your butt.
I'm with these other guys here.
When there's a failure to improve, MOST LLMD's are going to look to co-infections, regardless of negative tests. Because tests are not ironclad. Would you feel better if I found a reference showing that babesia testing is not always accurate? (I have one somewhere.)
Please do a trial. You owe it to yourself.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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SForsgren
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Member # 7686
posted
Agree Michelle. Worth trying. Either way, will provide more information.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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quote:Originally posted by Michelle M: Dear Doc Dave,
After all these years...
And all these antibiotics...
Will you at least consider a trial of Mepron/Zith/Artemisinin?
I'd bet my hat it will knock you on your butt.
I'm with these other guys here.
When there's a failure to improve, MOST LLMD's are going to look to co-infections, regardless of negative tests. Because tests are not ironclad. Would you feel better if I found a reference showing that babesia testing is not always accurate? (I have one somewhere.)
Please do a trial. You owe it to yourself.
Michelle
Amen.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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I hope you don't mind my saying this, but from your description, it sounds like your treatment lacked some continuity and/or consistency.
2 months on Rocephin twice in 2000 and later another 3 mos on Rocephin in 2003? P.O. abx "off and on"?
Do you think it's possible that when you "got sick" on Ketek and Flagyl, that you really might have been herxing? You definitely feel worse when you're herxing, but even when I was feeling my worst, I kept taking my abx.
I know of two other pts who were on IV Rocephin for a year straight. They're much improved, from what their father told me, and are now on orals only.
I've been on abx continuously since last September (Ketek started Sept '05, Bicillin LA since last October). Ketek switched to tinidazole May 06. I don't think we're going to get rid of this infection by continually giving them "breaks" from abx therapy. I'm much better than I was last year, and have started seeing much more dramatic improvement in the last month or two.
Just my opinion.
Patti
Posts: 449 | From Pasadena, CA, usa | Registered: Aug 2005
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quote:Originally posted by psano: Do you think it's possible that when you "got sick" on Ketek and Flagyl, that you really might have been herxing? You definitely feel worse when you're herxing, but even when I was feeling my worst, I kept taking my abx.
My thoughts exactly.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
I'm following this thread mainly because I know that some of the experts on the board (to whom I owe a world of thanks!) will chime in with things I never even thought about --
I'm very much a believer in the multiple-infection theory of lyme -- that is why I have been hitting it with everything I can tolerate -- abx and herbs/supplements for immune support, anti-viral activity, detox.
Babs treatment has made a HUGE difference in how I feel -- (I tested negative for it, btw, but symptoms indicated otherwise)
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
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