richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
I decided after three years of treatment I am going to call it quits if not better by next summer. I will just have to live with the horrible pain and other symptoms. Nothing can be done at this point, I guess.
I hear mixed things about the Cowden protocol. My nutritionist said the best I can do is really just eat a very clean diet, lots and lots of raw veggies, juicing, exercise and herbs as I can afford.....or maybe try the Cowden protocol.
I might also investigate chemotherapy since I have MGUS and may also investigate medication for Ankylosing Spondilitis since I have that which is probably from the infections.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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I completely understand your wanting to stop treatment; it's difficult and frustrating, especially after everything you've been through.
When I saw your post, I felt I had to tell you that I stopped treatment a few months ago.
I stopped my meds, stopped coming to lymnet, stopped even thinking about lyme disease and co-infections.
At first, it was okay. Then my symptoms began creeping back.
Now I'm back where I started, and I'm dreading getting back on the meds.
There are people on this forum who were treatment for 4+ years, then they started getting better, and now they are fine.
If you can possibly handle it, even for one more year, I think you should stick with it.
One more year of struggling is surely worth feeling better for the rest of your life.
I hope you don't think I'm belittling your struggle, because I'm really not. I just hate to see you give up after everything you've been through the past couple of years.
-------------------- Take care -kelly --------------- Posts: 330 | From TX | Registered: Mar 2009
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posted
Invested in a rife machine 3 months ago and quit antibiotics. Now mixing it with buhner protocol and doing better than ever. Paired with a smart diet, of course.
Prescription Meds are not the final word and in many cases I see they just make people worse (they did me).
Don't give up hope man, the alternatives do actually work.
Posts: 501 | From Cleveland Ohio | Registered: Apr 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- So you only love yourself so much and then you're not worth care any longer? Please say it isn't so. Sure hope not.
Don't give up. For some, it takes 4 years or more. Find what else can help you carry on as along as your body needs you, whatever that takes. I think your nutritionist is not very well educated about chronic stealth infections. Sure, good food is vital but, in order too fight "stealth" infections, we have to be more persistent.
We have to take care of ourselves our entire lives. We have to eat and drink and sleep every single day. Going the extra mile at times is just part of what we need. If you need to find new support methods:
Topic: How to find an ILADS-educated LL ND (naturopathic doctor), L.Ac. (acupuncturist), etc.
Includes how to find an ILADS-educated LL ND, a L.Ac. (Acupuncturist), a doctor of Oriental Medicine (O.M.D.), or a doctor of Ayurvedic Medicine (D.Ay.), certified herbalists or nutritionists, etc. DO, DC
Includes many professional links, articles and books on complementary / integrative methods - & RIFE links.
BODY WORK links are also included. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
But you don't understand....symptoms will not come creeping back. They never went away! I have gotten worse in my three years of treatment...not better! My nutritionist thinks it is because the ABX destroy the gut and the immune system so she said I should get off of them and stay off!
she says my immune system will only get weaker on abx.
I have had a Rife machine for over a year and that does nothing. I have buhner herbs and nothing.
My nutritionist is educated about chronic stealth infections. She has gotten lots of people well from Lyme and coinfections including herself. She cured herself with a raw diet and tons of quality enzyme supps.
She is also seeing lots of people get well on Cowden. All I know is I am not going to stop....I just think I will be done with pharmaceuticals and will only use naturals ways.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Abx are not the only way. All along the way, have you been able to be on liver support? If not, it's harder. If so, perhaps it was not the right kind or level of support, etc.
I'm not saying how to carry on but just that you don't have to give up on yourself or your dreams for a good life. There are many ways to achieve that. And many combinations and rotations, too, to go after the CAUSE while supporting the body.
Stealth infections are complex. Complex methods are required to banish them.
If you have trouble with abx, chemotherapy is sure not going to be easier. And if it does not specifically target lyme or whatever other infections, it can just be more work for your liver -- and your liver is needed by your immune system.
Rather than trust your life to a nutritionist who is not lyme literate, perhaps help can be found by a consult with an ILADS-educated LL ND. And/or consider RIFE. Rife links are over the ND link posted above.
I understand the need to escape from reality, really I do. So, rather than declare a date to give up, maybe an information vacation is needed.
I know I just plopped down a bunch of links but, maybe it would be good to take an information vacation for a couple weeks. Then approach it from a quieter angle, trying to sense what direction your body may be leaning.
When we leave all the noise outside and give ourselves space to just "be" our bodies can communicate with us more clearly.
To be clear, though, an "information vacation" does not mean we can drop all good self-care habits. But, to break boredom, there are likely still fabulous flavors from many healthful foods that we have yet to explore. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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tick battler
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posted
richedie,
Please look into alternative treatment options...the Cowden herbs are working wonders for us after the abx stopped working. We live 10 minutes away from you and probably have similar strains of bacteria. My husband had 3 years of abx with little progress and is doing a bit better now on Samento, Cumanda, Burbur, Enula and GSE. (You need to take all of these at once.) I believe my kids have cleared their lyme. We are still cleaning up their bodies from candida and parasites and healing their guts from the abx.
We are also looking at the EMF angle, which I feel is a big part of my husband's insomnia, ear ringing and headaches...We have been turning his bedroom fuses off at night and his ear ringing is diminishing. EMF's can be a big issue once you get sick with lyme. I also now turn off my children's fuses after testing their body voltage where they sleep (which was quite high). Listen to Dr. K's lecture on this which Gigi posted a month ago.
Rife is another option if you do it aggressively. Stop by the Vitamin shop in Gateway mall and ask for Franco...you can try his machine for free.
Giving up with lyme doesn't get you anywhere...you can get better if you look at every angle. You are already doing the diet piece, which is the most difficult part for many. You just have to be open to other treatment options. I now feel that the abx are not the best treatment option, based on what I have seen with my family. They can work for some but I think the herbs actually work better. The herbs are curing my family.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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lululymemom
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Member # 26405
posted
You should try the Byron White Formulas... He claims success with them and they do seem to have an impact on symptoms. I'm gonna go this route before abx.
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
My nutritionist is educated about chronic stealth infections. she is lyme literate. She has gotten lots of people well from Lyme and coinfections including herself. She cured herself with a raw diet and tons of quality enzyme supps. She works out of my LLMD's office and she knows Dr. B personally. If not her, I can't imagine finding an ILADS-educated LL ND to be any easier.
She is also seeing lots of people get well on Cowden. All I know is I am not going to stop....I just think I will be done with pharmaceuticals and will only use naturals ways.
why I have I not seen improvment in 2.5 years?
My oncologist feels the bugs are gone and now the issue is the MGUS which is causing my symptoms. He has had great luck with chemo.
I know the liver is needed by the immune system but so is the gut. It starts in the gut and abx destroy the gut, weakening immunity.
Rife was a joke for me.
tick battler, yes...Franco is a good guy. Is his Rife machine any better than my $600 machine? Does Franco offer any herbal protocols for Lyme?
Problem is I have no idea what is causing what these days....Lyme, Bart, Babs, AS, MGUS, WHAT! I want to scream and cry.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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Bugg
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Member # 8095
posted
Richedie-
This is the same decision I faced after 3 1/3 years of treatment with oral, IV abx, and HBOT.....It was so tough to relinquish the abx but I felt like I just wasn't making any progress on them in terms of "curing" the infection.....
This is such a personal and difficult decision....
For what it's worth, I completely agree with you that long-term abx plus the inflammation of the disease rob our bodies of essential nutrients/minerals in ways that we just don't have the clinical data/studies to show us (because they haven't been done on long-term abx and inflammation in the chronically ill)....
The inflammation is JUST HORRIBLE....I feel MUCH BETTER after stopping the abx....But DID NOT, REPEAT DID NOT feel better until I started replenishing key minerals/nutrients in higher doses....For me, my body needed at least 5,000 IUs a day of Vitamin D coupled with 1200mg a day of calcium with magnesium throughout the day (MagTabSR)...
Others such as myself and Sixgoofykids have also felt better taking whey (which helps with the inflammation)..
It was not an overnight fix and took some time (MANY MONTHS)to replenish these before I started to feel better....Just yesterday, I spent 5 hours walking through the mall and shopping....Two years ago I could barely walk down the isle of a grocery store....
Some have chosen certain maintenance abx to help them....I seem to recall minocyclene is used by many on the roadback.org site to help modulate inflammation (acts on TNF)....
Anyway, good luck with your decision either way....I wish I had the magic answer for everyone on this board....If getting off the abx and working with your nutritionist doesn't help, you can always go back on them....
I wish you well....
Posts: 1155 | From Southeast | Registered: Oct 2005
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Hambone
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posted
I know Eva Sapi through a friend, and she said she sees the most improvement with people with the Cowden Protocol. That's how she got well.
That's the route I'm taking after I give abx a fair try.
I wonder...can you do both simultaneously?
Posts: 1142 | From South | Registered: Dec 2010
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posted
You've tried the raw diet for a while. Why not try to go paleo for a change ? The body generates it's own natural antibiotics when you're in ketosis.
You could also try some anti-viral supplements to go with the antibiotics. I suspect a lot of people's cases are complicated by multiple factors.
Posts: 330 | From Colorado, USA | Registered: Nov 2008
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richedie
Frequent Contributor (1K+ posts)
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posted
Who's going Paleo? Me. I hate eating meat. I eat a fe times a week it but it very unpleasant at times for me. I have tried Paleo before and felt sluggish all the time. Hated it. Who tried raw? Not me...
There is no such thing as a maintenance dose of abx for me because they don't work, period!
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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posted
I am in the same situation, Richedie. 4+ years on antibiotics and several regimens for Lyme and co-infections. Prolonged herx reactions to most combinations, but never actually getting any better.
I have the bad detox gene, and Celiac and Hemochromatosis, but I am still expecting to recover.
I started treating for KPU/PKU 5 months ago, even though my lab test was just borderline.....I had enough in my history to warrant a treatment trial ( chronic lyme, Lead poisoning, detox problems )
Things are starting to improve !!!!!! I am not just going by subjective feelings, but my labs are improving too ! I think I have never been able to detox because of the KPU issue. The protocol helps to open up the detox pathways again, plus a myriad of other things.
I have just hit the 5 years on abx. I talked with my LLMD yesterday. I am going to continue KPU protocol , stop abx and do the Byron White herbals, and do Diflucan 100mg/day to take care of yeast.
For many people who seem to hit a wall with Lyme treatment, KPU is a key issue....please check it out.
Posts: 250 | From canada | Registered: Oct 2007
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
quote:Originally posted by ninjaphire: If you want to try an antiviral regimen, here's mine.
3 times daily Olive Leaf extract 500mg Oil of Oregano 300mg Egcg 200mg
Remember, start slow. Plus, some lecithin might be good for your liver.
What about eggs ? 3 eggs/day might not be a bad idea.
3 eggs a day? I sometimes eat a dozen! LOL I eat a lot!!!!!
I take tones of Olive Leaf extract and Oil of Oregano.
I never herx, period!
What are the Byron White herbals????????? Who has gotten better on them? I can't order those myself I am sure.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I feel for you. If you are close to tick battler maybe you should check out her protocol which is not abx. She is much better and her family is recovering too.
I do believe another doctor might be helpful as this one seems to have given you a hopeless attitude. You were not talking about going natural at first. You were talking about suffering and never getting better. That is alarming to all of us. We need to be fighters and we are all on your side- no one is going to let you surrender.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
Byron White herbals I am on A-Bab and A-Bart. Also KPU Core. Be sure to get tested if u have not. www.bioresourceinc.com See Byron White on left read ALL info. I am slowly having positives.
Posts: 905 | From Santa Cruz,Calif | Registered: Aug 2005
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
Don't quit!
Aren't you the workout enthusiast?
And you were a powerlifter before coming down with Lyme?
According to Dr B and Dr S you have a GREAT chance at overcoming Lyme. Keep at it and do your research.
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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Tammy N.
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Member # 26835
posted
Something is missing from your picture. But "what" is the big question. I really feel for you.
I'm wondering if part of it can be a detoxing issue. Have you looked into KPU?
I would look more into Dr. K's approach. Maybe you can find a practitioner near you that has been to some of Dr. K's classes and follows his protocols.
Best to you, Tammy
Posts: 2238 | From East Coast | Registered: Jul 2010
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
Sorry to make it sound like I am giving up. I meant more in terms of the abx route. My nutritionist is really hoping I try a different route.
I am considering outing together my own herbal protocol based on Bhuner, Cowden or something.
Being diagnosed with AS and MGUS does not make this any easier.
Tickbattler, The nutritionist who owns that Gateway store, he carries quite a few great products. Maybe he would be willing to help me put together a good herbal protocol.
A friend of mine after many years of being sick has finally started to see improvement after years. He sees Dr. C. In PA and she seems great. She gas him on way more herbals than me! But he eats pretty bad, doesn't avoid white flour or cakes and things. He said he ate perfectly for three years and it got Jim nowhere so he is back a typical American diet. Unfortunate.
One of his big symptoms has been spine pain and that is what I sm now starting to experience and that is what really started to get me all gloomy. What next? Speaking of back pain....it has put an end to me working out. I stopped working 6 days ago. I used to be big into weight lifting and bodybuilding but disease has stolen that.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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tick battler
Frequent Contributor (1K+ posts)
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posted
richedie, Why not make it easy and try the protocol my practitioner uses? With the help of her EDS machine, she claims she gets rid of Lyme in everyone she sees. I didn't believe her at first but now I do. I can give you the dosages. You can run it by your nutritionist.
We can see it working both through EDS testing and by observation. My kids have all tested NEGATIVE for lyme and all coinfections after 8 months on the herbals. I feel much better as well and I have only been on this protocol for 6 months.
My practioner is not taking new patients now but there is a woman in Dillsburg who does herbs and who uses EDS testing (I think) that I believe 17 hens sees...you might see how she likes her and what protocol she is using.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
Can I do the herbals while on abx? I told my dic I would hang in ther till next summer.
Would you mind sending me a PM?
What is EDS?
Thanks!!!
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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posted
I took many herbs when on abx under the direction of my LLMD, so yes, they can be taken together.
Stopping abx is not the same as giving up. I don't believe abx are the only way. They certainly got me out of the hole, but alternatives are what got me well.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Remember to Smile
Unregistered
posted
quote:Originally posted by Bugg: I completely agree with you that long-term abx plus the inflammation of the disease rob our bodies of essential nutrients/minerals in ways that we just don't have the clinical data/studies to show us (because they haven't been done on long-term abx and inflammation in the chronically ill)....
The inflammation is JUST HORRIBLE....I feel MUCH BETTER after stopping the abx....But DID NOT, REPEAT DID NOT feel better until I started replenishing key minerals/nutrients in higher doses....For me, my body needed at least 5,000 IUs a day of Vitamin D coupled with 1200mg a day of calcium with magnesium throughout the day (MagTabSR)...
Yes, a sound plant-based diet and nutritional support are key to achieving and maintaining health.
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When you stop antibiotics, it may be worth taking anti-fungals for a while. Though some mainstream doctors like to make fun of it, systemic candidiasis is no joke!
In your signature, I see no indications that you are on anti-fungals. Are you on them? If so, maybe you can ask your doctor about continuing them after stopping antibiotics.
Diflucan is probably best. Severe systemic candidiasis can mimic all the symptoms of Lyme disease. Really.
Since you have had no improvement with antibiotics after 3 years, I fully support your decision to stop taking antibiotics. How can they be doing you any good?
It's cult-like how others here are trying to convince you to keep taking them. I don't get it.
Ignore the noise here, and make your own calls. It's your health. Follow your intuition.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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posted
I don't want to weigh in one way or the other on whether to quit antibiotics. That is your personal choice. However just wanted to say: DO NOT GIVE UP!!!! Giving up is not an option.
Posts: 366 | From Louisville KY. | Registered: Nov 2003
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
I had to quit abx, I'm scared cause I'm so unstable, but trying the herbal route. Bart is vicious. Feel what you have to do, but keep doing. One day we'll be glad we kept doing.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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posted
I'm with you......I'm done with Antibiotics.....My Lyme Neurologist told me 6 years ago that there was nothing more that could be done for me.....I should have listened to him then .....I have spend so much money and quality of life time being sicker on antibiotics and trying different treatments that I am not going to chase that dream anymore!.....We are just making the drug companies and the doctors richer.....I am going to live the rest of my life accepting what I have and am going to try to make the best of each moment without any more medical problems added on to my already Chronic Late Stage Lyme Disease of the Central Nervous System that was Diagnosed in 2002......Good Luck to you....
Posts: 59 | From NH, USA | Registered: Oct 2004
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
My doc is not a BIG fan of Diflucan. She said studies are showing some bad side effects, etc. However, she had me on it for two weeks and I think my anger and anxiety were less. I might ask for more.
Only other anti-fungals I do are food, parastroy and oil of oregano, plus Nystatin.
I understand candida can mimic these other infections but why would it mimic the exact same symptoms I have had from day one, arm pain, hips, back and foot? Maybe because those are weakened areas already? My pain never migrates.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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Sorry you are feeling discouraged. One thing I see you have not tried is IV antibiotics. Some people need the extra boost they get from IV.
Hubby is doing the best he has in 10 years. I honestly did not expect such a positive response from IV Rocephin. Back in 2003 it was the first antibiotic hubby did. At that time he had maybe a 25% improvement that started going away within a week.
The difference this time in my opinion is the aggressive bart and babs treatment he had in the intervening years.
The first 4 years hubby was in treatment he took many breaks from antibiotics. We either had problems with docs or didn't have the funds to do continuous treatment. Over the years hubby has done many herbs -- both on their own and also while on antibiotics.
Have you tried systemic enzymes -- wobenzym, lumbrokinase or something like heparin to thin the blood?
Another possibility might be essential oils. Or something like bee venom ointment.
The two tinctures that hubby did the best on were stephania and cryptolepis. Did not try combining them, but have read where Buhner does suggest that. Both will definitely cross the blood brain barrier if the dose is high enough.
Not sure if LCD (Lumbar cervical decompression) is counterindicated with AS or not. Those treatments were lifesavers for hubby when he had a bulging disc. But be careful some practitioners are better than others.
If they don't know how to code the claims so that it is covered by insurance then find another doc -- those are the ones in it for the money only. And they don't need to have the big expensive DX 9000 to do this procedure.
Have you been checked for osteoporosis? That could cause bone pain. Hubby has severe osteoporosis -- we found out after a chiropractor cracked one of his ribs. He did do the once a year injection with the drug Reclast last year and plans to do that again this year. Since then he has a hard time keeping his blood calcium in the normal range so I am hopeful this means he is building bone. Insurance only pays for a bone density test every 2 years so won't have a new test done for another year.
I would not hesitate to stop antibiotics and try something else. It is your body and your life. Reading these boards it doesn't take long to discover that there is no one right treatment.
The best advice I can give is within reason test for various pathogens -- including viruses and parasites -- and treat everything you know is wrong. And try to maintain a positive attitude.
Good luck.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Richedie, I'm sorry the abx haven't worked for you. I hope the Cowden protocol is able to help you. It certainly is worth a shot!
Tickbattler--I wish we lived closer to PA and your practitioner was taking new patients--I'd bring my daughter in a heartbeat!
In the meantime, am tired of my child using abx and not really progressing any longer so have been trying Buhner for the past few months but am seriously thinking of incorporating some Cowden.
Posts: 648 | From northeast | Registered: Feb 2009
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karenl
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Member # 17753
posted
If you are not getting better you do not have the exact diagnosis. Are you treated for parasites, tested for cpn and heliobacter pylori,negative strep, stap aureus... They all might be in the picture in addition to lyme.
Posts: 1834 | From US | Registered: Oct 2008
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
My insurance would only cover about a month on IV and I do not have a current positive for Lyme. My doc thinks the only issues I have now are Bart and Babs.
I took wobenzym for a while but they are expenisive!
I tried bee venom ointment.
I am taking Alinia and herbs for parasites.
Was not tested for tested for cpn and heliobacter pylori,negative strep, stap aureus...
Lumbar cervical decompression did nothing for me.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
How long till noticed a difference on these herbs?
quote:Originally posted by tick battler: richedie,
Please look into alternative treatment options...the Cowden herbs are working wonders for us after the abx stopped working. We live 10 minutes away from you and probably have similar strains of bacteria. My husband had 3 years of abx with little progress and is doing a bit better now on Samento, Cumanda, Burbur, Enula and GSE. (You need to take all of these at once.) I believe my kids have cleared their lyme. We are still cleaning up their bodies from candida and parasites and healing their guts from the abx.
We are also looking at the EMF angle, which I feel is a big part of my husband's insomnia, ear ringing and headaches...We have been turning his bedroom fuses off at night and his ear ringing is diminishing. EMF's can be a big issue once you get sick with lyme. I also now turn off my children's fuses after testing their body voltage where they sleep (which was quite high). Listen to Dr. K's lecture on this which Gigi posted a month ago.
Rife is another option if you do it aggressively. Stop by the Vitamin shop in Gateway mall and ask for Franco...you can try his machine for free.
Giving up with lyme doesn't get you anywhere...you can get better if you look at every angle. You are already doing the diet piece, which is the most difficult part for many. You just have to be open to other treatment options. I now feel that the abx are not the best treatment option, based on what I have seen with my family. They can work for some but I think the herbs actually work better. The herbs are curing my family.
tickbattler
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richedie
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tick battler???
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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tick battler
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It may be 3 months before you notice a difference, but since I think you mentioned your nutritionist does EDS testing, she can gauge whether you are truly making progress. That type of testing is what helped me stay the course on the herbs with my children. It may take a year on this protocol.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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tick battler
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My husband just told me that he thinks the protocol is working. He just went for a run and said that he actually didn't dread it. He feels like going for a run. He has been on this protocol for 4 months.
He was on 3 years of abx before this and didn't feel this way. Running was torture.
The only other variable is that for the past month we have turned off the fuses at night where he sleeps. That may be helping as well.
richedie
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How do you turn off your fuses? You mean you turn evrything off by the breakers? That is interesting! Do you keep your heat off and all lights too?
My nutritionist is saying 6-8 months on the Cowden tends to do it.
Why no Artemisinin?
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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posted
what is MGUS? any idea what causes it?
Posts: 723 | From Montreal | Registered: Oct 2010
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momlyme
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quote:Originally posted by Shahbah: what is MGUS? any idea what causes it?
I am wondering the same thing.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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seekhelp
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This article says MGUS is harmless for the most part:
I know nothing more about it though. Just tossing this out.
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momlyme
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Thanks seek -
MGUS = Monoclonal gammopathy of undetermined significance
Now... can the Mayo Clinic be trusted? I think not.
Who knows something about this. I find the name intriguing. When are they planning to determine the significance? Will they rename the syndrome then?
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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posted
fff this is nonesense! undertimined significance?!!!!!! My God, they should be ashamed to put such a name...and then pretend it's harmless? How do yhey know if they don't even know what it is?...
Posts: 723 | From Montreal | Registered: Oct 2010
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momlyme
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richedie - what do you know about MGUS?
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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richedie
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quote:Originally posted by seekhelp: This article says MGUS is harmless for the most part:
I know nothing more about it though. Just tossing this out.
And there are thousands of articles that say Lyme disease is minor.
I have seen doctors who told me that MGUS can cause all of my symptoms and so can Ankylosing Spondilitis which I was also diagnosed with. All a result a the infections? Possible! The number one theory for MGUS is an undiagnosed infection.
My doc at Fox Chase in Philly says he has other people with MGUS....but were never tested for Lyme, etc. Many of them get better with cell targetted chemo.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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springshowers
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I so hate to hear the stories of people sick for years and feeling worse or never better after years of treatment. This was me too. And this was me for near 10 years. The first 5 was because I did not realize what I had at all and was told FMS and CFS nnd treated symptoms only. The next 5 were treatment after treatment and I ALWAYS felt worse and herxed forever and never got better on ANYTHING> I tried so many things.
In hindsight. Not until I got very aggressive in treatments and detox did I start to make progress. Funny thing I decided to throw in the towel too but not until I sold everything and mortgaged everything I had.. and I gathered up every dime I had and used credit too.. and I gave myself a six month window to find aggressive integrative treatment. And Inclusive off detox detox detox.
In hindsight. I see how I was so overloaded with neurotoxins there was NO way I could "Feel" better even if I was doing the right treatments. All that work prior this for nothing really. So upon finding that balance and doing nothing but treatments and detox for six months every minute of the day I had that I was capable. I began to improve. It was like finding that place where the tub will now drain faster than the tub fills up.
Prior the tub was filling faster and all I did was be on overflow constantly.
Then with all the supportive treatments and aggressive killing of bugs and detoxing at the same time the drain started to be faster and faster and the filling slowed down.
Now I am able to do and take treatments if I want that I never considered before ever. Its like I unclogged the drain. I am not fully better. But I surely am not bedridden anymore and can do things I have not been able to do in so many years.
Still working on things but the thing is now I can work on them.
I Hope this logic might make sense to you and maybe you can apply it to your situation and or others here who get stuck in that grind and NEVER Ever feel better or STAY Feeling worse even when they try to treat this disease.
I surely know how it feels and I can not believe now that I endured that for a decade!!!!!
What suffering and unnecessary !! Now that I can look back it makes me sad. > But also I hope the story helps someone and you can find the right path to getting that same thing done.
We are all different but at the same time quite a bit alike. I notice a certain group of us who have the problem of not improving and not feeling better after treatment and even staying worse after a herx that just stays and stays forever.
That group seems to all end up at the same discussion of detox and also the balance of treatment and detox.
I can not believe that i am saying it took aggressiveness to help me because at one point I would NEVER have known. I was barely able to take tiny bits of abx or if I took the prescribed amount i felt so much worse I thought I was dying. IT was so touch and go and I was so stuck there.
Anyway....
Take good care.. and sometimes is not what we are taking or doing but "how" it is being done that can make all the difference.
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posted
Spring, please share with us your detox regimen, ie sauna, milke thistle, epsom salt baths, etc.
-------------------- LAXlover Posts: 371 | From Northern Baltimore Area | Registered: Apr 2010
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richedie
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My only symptoms are pain. I feel energetic, strong, etc....just hellish pain that was there from day one and still is there! Never, ever goes away!
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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richedie
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Even though I am in hellish pain right now....feels like my left arm has been beaten with a bat and nurned, shoulder pain, back pain, foot pain.....even if I don't get better, I will go in the face of pain next summer and get back into a full on bodybuilding program, lots of protein powder, creatine, heavy, heavy weights and work toward my dream of entering a bodybuilding competition (Master's Class). Sick or not, this thing will not get in my way!
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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richedie
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My doctor said she thinks I am done with Babesia. That was last year...after almost two years on mepron. Well...the last three weeks have been filled w ith lots of night sweats.
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richedie
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tick battler....
your mailbox is full!
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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phyl6648
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richidie, I haven't even gotten started and want to give up on abx.. My body won't tolerate them no matter what my doc says. I am trying antioxidants, aloe vera drink, vitamins/minerals and essentials amino acids.
Been sick over 11 yrs was dx with cfs/fm but had lab work done over 2 months ago, did a lyme western blot and 2 bands were positive. IgG 41 and Igm 23..
Not sure what will happen but sick and tired of worrying over the abx...
Good luck to you and keep us posted.
Posts: 1058 | From VA | Registered: Oct 2010
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D Bergy
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One thing I would try, just because it has no down side, and some of your symptoms sound almost autoimmune related, such as Ankylosing Spondylitis, is Low Dose Naltrexone.
Maybe, given the chance, you immune system could take care of whatever is causing your pain. It almost does not sounds like Lyme at this point.
Maybe one of the hundreds of other infections that are too numerous to try single out, are causing problem.
I use LDN as a Crohn' treatment, and it is used for virtually any autoimmune disease, or condition in which a stronger immune system is needed.
If your pain is Arthritis related, LDN is used with Alpha Lipoic Acid, and has been pretty effective in this application.
Dr. Burt Berkson is the expert in this area.
LDN is virtually risk free, which is why I use it myself.
Dan
Posts: 2919 | From Minnesota | Registered: Aug 2006
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richedie
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San,
My Psychiatrist said she is willing to get me LDN. What does it do? Does she need to use a special pharmacy???
Thanks!
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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momlyme
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richedie - are you taking any antioxidants?
I was diagnosed with chronic reactive arthritis when I was 23. I went from being an auto mechanic to not being able to take out the trash.
I was afraid I would never have children because I was in so much pain I was afraid I would not be able to lift my own baby.
I went back to college. I studied chemistry & nutrition... determined to find an answer to my pain.
Over a period of 3 years, I tried countless nutritional supplements that were on the market and supposed to give pain relief.
What I would do is research the toxicity level and then ramp up to a saturation dosage. I would go 5-7 days at the highest dose I could possibly take.
I kept trying different supplements until I found the one that works for me.
For me it's grape seed extract. For you, it may be something different. I hope you find your something. I know that constant pain can be maddening.
I still take it to this day. I only take a maintenance dose and it keeps me pain free and drug free. I have to keep bottles of it in every room, car, golf bag & pocket book... because when the pain hits... I need a pill. But it's natural, no side effects.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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D Bergy
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LDN just boosts your immune system. Some of us just do not have a properly operating immune system for some reason.
I would use one of the approved LDN compounding pharmacies on the lowdosenaltrexone.org site.
I use "The Compounder" in Aurora Illinois. "Skips Pharmacy" in Boca Raton Florida is another good one to use. They are a little cheaper also.
It is often compounded wrong, if you use any old pharmacy.
I guess my philosophy is, if you can't identify what pathogen is causing you trouble, arm the immune system. It knows, but maybe just doesn't have the oomph to kill it. It may not solve all problems, but it very well could make a substantial difference over time.
It really is about the safest drug in the world.
Dan
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