posted
I've been on practically every abx (besides Bicillin shots/IV Rocephin) without full recovery. I feel like I'm pumping my body full of these drugs only to maintain a level of "health" (which isn't truly health) just to get through the day.
I recently had a scare and was in the ER for right sided abdominal pain. Nothing much came of it, though my WBC was slightly elevated and my Total Protein very slightly elevated as well, but Liver Enzymes and everything else checked out okay, so I hope my liver is okay for now. I just wonder what harm the abx are doing to my body.
Honestly, what do you do when you've put so many toxins into your body but you are not cured? Continue to let the Lyme kill you or let the abx kill you? What's worse?
I am just looking for support, advice, alternative remedies that aren't hard on the liver. I'm not sure of Samento is even an option anymore? Perhaps I'm just one who will never be cured. I just don't know that I can live with that. I am young - I want to see my children grow up. I want to be healthy and happy, but I don't know how to obtain this goal.
I've been with my LLMD since 2003, but haven't discussed any alternatives to abx.
Being off the abx for just 2 weeks has brought back eye pain, back pain, headaches, hairloss and a signficant increase in fasciculations.
I'm dealing with severe health anxiety and panic attacks.
So just what can you do? What else is there that will work? Is it really possible to live on abx and not destroy your entire body? Possible to live with Lyme Disease and not be wheelchair bound? And if just ONE of the dozen doctors I saw actually listened to me and cared enough to not throw wastebasket diagnosis at me, I wouldn't be in this hell.
So with all that rambling...if alternative meds have worked for you, I'd love to hear from you. Cleanses? Detox? Anything. I am also wondering if I have Candida overgrowth. Is that something easily tested for? I truly appreciate any input.
Posts: 144 | From Marysville, Ohio | Registered: Apr 2003
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posted
Side pain: When I have pain in the right side, I think it is due to billiary duct blockage. My gall bladder tests clear, so after searching through Google University, this is what I surmised.
When it happens, I take epsom salts in a glass of water. For me, it leads to great relief.
Candida test: I had my Candida tested at Great Smokies labs when they were still Great Smokies. I think they are named Geneva now. Very good test.
Once I tested positive, I started on ThreeLac. I absolutely love it, and it actually tastes good. Kind of like a pixie stick for adults.
Not sure what may work for you, but worth looking into.
Good luck; I'll be thinking of you.
Posts: 636 | From Saratoga County, NY | Registered: Apr 2008
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posted
Thanks mazou. The right sided pain is gone now, but it was scary and thought I was dying of liver failure (again, health anxiety rearing it's ugly head). They did think it was a ruptured ovarian cyst, but that still didn't explain the upper right side pain.
Myco - My LLMD (not sure how much info I can give, but dr J in PA) tested me for Bartonella because I asked for it, through just Labcorp, and said it was negative and felt that was enough not to treat it. I haven't been on drugs to specifically treat anything but the Lyme.
Posts: 144 | From Marysville, Ohio | Registered: Apr 2003
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Parasites and worms are a MAJOR part of Lyme disease. Antibiotics will not get rid of them. Check out
I did not start healing until I started to treat the parasites. Don't ignore this,
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
Thank you Gael. I have been wanting to do a parasite cleanse, but never sure of which one to do. I have MANY symptoms of parasites. I will check out your links.
Posts: 144 | From Marysville, Ohio | Registered: Apr 2003
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posted
What worked for me - I did abx for 20 months and would maintain a certain level of health. I described myself as being 90% .... but that was not taking into account that I didn't get up and become active until about noon, or that I had terrible insomnia and took many sleep drugs.
When I got off abx, I'd crash.
My recent treatments that have worked - Bionic 880, Hulda Clark liver cleanse, kyrptopyrroluria/pyroluria treatment, and parasite cleanses. I am now feeling close to 100% well.
With your anxiety and panic attacks, I'd look into pyroluria. Dr. K has found 80% of Lyme patients have it. www.drrandy.org
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Thanks so much for your replies! I will certainly look into that. I have never heard of pyroluria. I'm interested in learning more.
Posts: 144 | From Marysville, Ohio | Registered: Apr 2003
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
mvilas,
If you do parasite cleanses, keep in mind that it you have to be persistent and one parasite cleanse is not nearly enough. You might want to check "other cleanses" at Humaworm because they have a series of herbs to follow.
Hulda Clark is also something you might want to look into as well. My, asthma, anxiety and allergies have all dissappeared with treating parasites.
Check out the" Parasites and Lyme" thread that sparkle7 started, lots of very good info.
Good luck, Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
Hi, I agree with Six, I just tested high positive about 2 mo ago for Pyroluria, it has a lot to do with not being able to detox right and more. I have had horrible anxiety for yrs along with many other symptoms. The MD web addy Six posted is my md.Click on article's. Look for A breakthrough in helping chronically ill patients. Also do a search here on Pyroluria,KPU or Kryptopyroluria. I wish I had known yrs ago that I have this. Hope this helps,hang in there. Joyce
Posts: 905 | From Santa Cruz,Calif | Registered: Aug 2005
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posted
Test for heavy metals, the comprehensive lyme doctors usually say it's impossible to get rid of lyme if you have mercury poisoning, probably true for other metals such as lead too. I know Rosner's book mentions this. My llmd basically says if he has a patient that isn't improving and finds they have heavy metal poisoning that once he addresses the metals he will start to see improvement.
Posts: 499 | From Indiana | Registered: Oct 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Pryorka, if this is true, why do so many well-known LLMDs not test for metals or do it many months into treatment?
I'm guessing it's to save the patient $$$, but it sure is not if you are correct in the long run!
I was tested by holistic docs with hair tests and unprovoked urine testing.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
What is done for heavy metals poisoning?
Posts: 2541 | From Northeast | Registered: Jan 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Chelation Laura - either orals or VERY expensive IV.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
Did you ever have an ART test? Can give you new ideas. I am on Dr. Z's chinese herbs, also gall I and very good for liver coptis.You need it. I need to stay on the herbs, but tolerate them very well and no toxicity. Teeth, root canals?
Posts: 1834 | From US | Registered: Oct 2008
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posted
Start chelating mercury if you want to get better. CLearly antibiotics will never cure you if you haven't gotten better in 6 years. You're climbing up the wrong tree in regards to treatment. Lower your toxic load and you'll slowly get better.
Posts: 80 | From Canada | Registered: Mar 2009
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bettyg
Unregistered
posted
just stopping by to give you some moral support; others have done the rest with their good advise.
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posted
I have done lots of chelation. But if u have Pyroluria the body cannot get rid of them.Once on the protocal the body starts dumping heavy metals and other toxins that have been stuck.
Posts: 905 | From Santa Cruz,Calif | Registered: Aug 2005
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ukcarry
Frequent Contributor (1K+ posts)
Member # 18147
posted
Do you take anything specific to bind this increased load of metals and other toxins due to the KPU protocol?
D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
If detox is a problem, I think you have to find an effective method to solve this problem before any treatment can help much. I do not know much about detoxing but other do.
Frequency treatment with a Rife type device can help considerably. The only liver stress would come from dead bacteria which cannot be avoided.
The reason we have stuck with it, is because it works and it is one of the few treatments you can use for years if needed. There is no known side effects from this method, although it is experimental.
Just one option you may want to consider.
Good luck.
Dan
Posts: 2919 | From Minnesota | Registered: Aug 2006
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Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
Have you looked into supplementing (without being on the abx) NAC to increase glutathione, methyl-B-12, pyridoxal 5-phosphate (B-6), and magnesium, and zinc....All help remove the toxins...Then you might want to take a binding agent such as charcoal to assist with the elimination....
I would be extremely surprised if your glutathione levels weren't low after all of those years of abx, especially if you took any pain medication in conjunction with the abx....
I, too, am not well after many years on IV and oral abx (and doing HBOT)....I've had to start very slowly with the detox as it may, at first, increase your achiness and fatigue....
I've noticed already, though, that my diffuse muscle pain is much better...
Luvs2ride has some great posts on detox....
Posts: 1155 | From Southeast | Registered: Oct 2005
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
I'm with D Bergy - Rife machines are very effective. I've been using mine for Lyme and did my first parasite frequencies yesterday. Please look into it!
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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ping
Frequent Contributor (1K+ posts)
Member # 6974
posted
mvilas - Don't throw in the towel yet! I was on abx steady for over 5 years and almost 2 more years on and off. Have been off abx for a number of months now.
Take a look at the post "Allergie Immune Germany" here in Medical Questions. This might help you eliminate some problems. I'm very excited about this therapy and have ordered my test kit and can't wait to get started. Only after A.I. will I begin with the other tx's: Humaworm, Humacleanses, chelation.
Check it out, read the posts and the links to the materials. Good luck in whatever you do.
ping "We are more than containers for Lyme"
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
mvikas,
You've gotten a lot of good advice here. I used to drive myself crazy with should I do this or that, what vitamins do I need, should I get almagams removed etc, etc,etc....
I got clear direction from the powers that be to "Stay Focused and Keep It Simple" Interpretation...Get rid of the Parasites and worms and pathogens from the largest to smallest. They are also responsible for holding onto the metals.
I am 90% better and getting better everyday. The Parasites are protecting the bacteria and when you get rid of those, the other co-infect are easier to get rid of. You might want to look into finding a good ND (naturopathic doctor) who is familiar with Lyme disease.
Just my 2 cents. Hope You find your way back to health, I know you can,
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
I just ordered ThreeLac on line and started my Candida killing diet I've lost 10 lbs in 3 weeks. when I eat suger I feel it the next day. I don't get the cracks in the corners of my mouth since I quit eating wheat breads and sugar.Main thing is you have to walk or workout every day even if you have to push yourself. Good luck Mvilas keep fighting this with diet and excercise.
Posts: 5 | From Wisconsin | Registered: Feb 2009
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posted
Hey seekhelp I know my llmd didn't test for metals at the beginning because he likes to kill off as much of the infection as he can and get the toxins from that detoxed out before addressing the metals along with the infection that's left protected by metals. I guess if the infection load is too high it'll be really hard to detox. But most of the llmds I know of all address metals at some point except for one in the carolinas... for some reason he doesn't and I know a patient of his that's been in treatment with him for 7 years and had no improvement, but she lived with a mouthful (about 12) amalgams for 30 years before she had them taken out two years ago and wasn't able to move for nearly a week after having them removed. She also had a DMPS IV once that nearly killed her(mobilized so much mercury) so she's scared of doing chelation. So I'm guessing mercury is her problem but her doctor won't address it. People as toxic as she is need to start out at very low doses. None of that overly expensive high dose IV stuff.
That's just a story for an example.
Posts: 499 | From Indiana | Registered: Oct 2007
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posted
Hi Carry, Yes, I am taking lots of binders. Chlorella,Apple pectin.Chitosan,French green clay,charcoal and Xeneplex glutathion,organic coffee and small bit of EDTA supositories.They are quite expensive but do give me relief. When I used them before KPU protocalthey made me sicker,now they help. What a blessing. I alternate. Also I do coffee enemas,foot baths.
[ 06-09-2009, 06:25 PM: Message edited by: Healing in Santa Cruz ]
Posts: 905 | From Santa Cruz,Calif | Registered: Aug 2005
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quote:Originally posted by karenl: Did you ever have an ART test? Can give you new ideas. I am on Dr. Z's chinese herbs, also gall I and very good for liver coptis.You need it. I need to stay on the herbs, but tolerate them very well and no toxicity. Teeth, root canals?
Hi. I have not had an "ART" test, though I'm not even sure what that is! I will look into these herbs as well. Everything is so very overwhelming. It's hard to dig and try everything, you know? Sometimes I want to pretend that it doesn't exist, but that's impossible with the daily pain.
When I was very young I had three fillings, all of which are amalgam. I have asked my dentist about these and of course they always 'poo poo' the removal of them. I understand it takes a specialist to properly remove them w/o doing even more harm. I have yet to find one, though I did do some research a few years back, but ended up at a dead end.
Posts: 144 | From Marysville, Ohio | Registered: Apr 2003
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posted
Again, thanks to all of you for your replies. My anxiety is flaring just by reading everything because it is so hard for me to retain this info and know exactly what I should do. There is a doctor in the central Ohio area that does some major blood testing as well as hair tests that most doctors don't do. I don't know how well she knows Lyme Disease, but I think I just might give her a shot. She seems to have helped my MIL with some of her issues as well as other people.
You know what - this whole abdominal pain (plus one day of vomiting and nausea for a week) all started after consuming far too much sugar. I had eaten (seriously indulged due to horrid cravings) candy for a couple days prior and then became really ill. I wonder if the two are linked.
As I stated before, my LLMD is not into alternatives at all. It's all abx, all the way.
Posts: 144 | From Marysville, Ohio | Registered: Apr 2003
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posted
Lyme ED - yes, gas and bloating. No, LLMD has not tested for candida, but I will be getting it done. I'm making an appt. with a local MD who does alternative medicine, so hopefully she can help me figure out some of the other stuff going on.
I do have a stock pile of diflucan to use as needed, but worried about the effects of that on the liver as well. Seems like everything is a lose-lose situation. It's really disheartening.
When I had initially indulged, I just assumed it was the citric acid that did me in and caused gastro symptoms. I am talking a load of sugar too. I've cut out all sugar, I'm off abx, and I'm currently doing one parasite cleanse. Hopefully this will help a little while I wait for appt's.
Thanks for all of the help. I'm saving links and will be reading when I can. It's just so darn overwhelming. So much information to be had, yet my mind can't handle it!
Posts: 144 | From Marysville, Ohio | Registered: Apr 2003
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
boy, what i wouldn't give to have dilfucan on hand....
i'd start doing 200 per day. that's also the schardt protocol.
might want to look that up and see if it helps. also good for yeast.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
Why did you not try IV Rocephin or the Bicillin shots? Do you have any allergies to some abx?
Those turned out to be 2 of the only 3 things that have ever helped me. Although, with my experience with the bicillin, it seems more like a crutch to hold up your progress. I had some symptoms get better while I was already recovered enough to have a part time job. The bicillin shots boosted my energy and made my joints stop burning.
Then I lost almost all progress I have made because of a crazy bout of stress causing bad luck. I am back on the bicillin shots, but am not doing any better at all.
posted
Treat for yeast and parasites and see how you feel. If that doesn't help, consider the Rife machine.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I'm not a doctor but co-infections look like a very likely problem in your case. Testing is not accurate and cannot be relied on to rule out co-infections. They need to be evaluated and treated clinically.
Your immediate relapse points to co-infections from what I've been told. Borrelia is slow growing and one does not typically relapse immediately after going off abx but not so with co-infections.
I tested negative for bart and babs. To my surprise, I developed the long red streaks on doxy. I had many improvements on treatment for babesia despite a negative test.
Please get to an LLMD who will evaluate and treat you clinically for co-infections.
I agree with others, amalgams, yeast and parasites are important as is detox but from everything I've read and heard, you will not get well if you have untreated co-infections. Also, you may want to ensure that you don't have on-going exposure to mold. Mold + lyme is very bad for some people.
Start reading and looking for information on co-infections. Time and time again you will notice that people do not get well until co-infections are treated, postive tests or not. They can be hard to get rid of - as hard as lyme disease itself.
Hang in there. You can get well. Start looking for an LLMD who will work on co-infections. They can keep you sick and keep your immune system depressed so that you can't get rid of lyme. There are many, including viruses.
Consider adding someone to your team who is an expert in detoxification. Some people can't get rid of borrelia toxins very well. They will also keep you feeling very sick. Look into Dr. S's work on biotoxins. http://www.biotoxin.info/ Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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quote:Originally posted by Skyler: Why did you not try IV Rocephin or the Bicillin shots? Do you have any allergies to some abx?
Those turned out to be 2 of the only 3 things that have ever helped me. Although, with my experience with the bicillin, it seems more like a crutch to hold up your progress. I had some symptoms get better while I was already recovered enough to have a part time job. The bicillin shots boosted my energy and made my joints stop burning.
Then I lost almost all progress I have made because of a crazy bout of stress causing bad luck. I am back on the bicillin shots, but am not doing any better at all.
Why? Because it's never really been discussed. I think I may have mentioned Bicillin at one point and he said that Ins. normally won't cover it. I don't know how expensive it is, but at this point...I'd try about anything that is safe enough for my body.
I sound like a broken record I'm sure, but I don't even know where to start. How can that be? I've had this terrible disease for close to 9 years (not diagnosed until 2003) yet I feel that I'm right back at square one. I feel like I need to start from scratch again. I used to read here a lot but it just became so overwhelming that I'd just sit and stare at the screen for hours. I know that the my concentration has been effected greatly.
I need to schedule with my LLMD soon and let him know my frustrations and how horrible I've been feeling. The last appt. was cancelled since I was in the ER with the abdominal pain, then the following week back in the ER with the panic attacks and severe anxiety.
Detox is my step number one. Getting some additional testing will be number two. I know that so many of you have done this and have gone through terrible times and gotten better -- I just feel so beaten down and defeated right now. Time to get back up. Thanks again for the support and input.
Sorry for not responding to all pm's yet!
Posts: 144 | From Marysville, Ohio | Registered: Apr 2003
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