lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Can't take antibiotics anymore because after 7 years of treatment, I got drug induced lupus. Trying to get the lupus into remission. Taking no prescriptions right now.
Need help.
Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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UP.....
Posts: 273 | From Banks of the Hudson | Registered: Nov 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
What are your symptoms of drug induced lupus, and do you test positive for lupus?
The reason I ask, is because I became ill 3 years ago after taking a medication and once I stopped it I never have been well since. Treated for LD for one year with no improvements. Now my LLMD thinks I may have drug induced autoimmune disorder. He actually calls it drug induced Immunological disorder.
I don't test positive for lupus, but I have symptoms which are actually the same as LD. I have an appointment with an Immunologist to see if he thinks the same thing as my LLMD.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Forgot to mention that I am on plaquenil right now for the autoimmune issue.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
I am 80-90% better since I started salt/c and antiparasitic herbs. Parasites and worms are a MAJOR part of lyme disease.
I was on antibiotics for 4 yrs and only started to make progress when I started treating for parasites. You may want to look into alternatives,
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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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
have you tried the buhner protocol?
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
Low Dose Naltrexone will help with the Lupus if it is caused by an autoimmune deficiency. It will also help with Lyme, so you get a double benefit.
Dan
Posts: 2919 | From Minnesota | Registered: Aug 2006
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lymie_in_md
Frequent Contributor (1K+ posts)
Member # 14197
posted
I'm about 95 to 100%, using many different things where I can't describe it simply. However, making sure the mouth and teeth are in good shape is paramount. If you energetically test for it, triphala is excellent in my opinion for beating back some of the parasites and to break up biofilm. I've done MMS for a good while and that in combination with LEDs seems to do a great job of killing lyme. Freeze dried garlic as well. You should pulse killing so you take time to detoxify with plenty of binders and teas oriented toward kidney support. You'll know when to detox, if you feel a bit more ill in the process. You'll have to get a sense of when to change from kill mode to detox mode.
On detox, glutathione suppositories are very helpful. Along with binders, a combination of citrus pectin from fresh lemons and apple pectin. Activated charcoal is very useful as well, zeolite too. There is plenty of information about binders here.
Lots of hot baths with sea salt and epsom salt.
Then there is the ammonia that accumulates from killing candida. In itself makes us sicker. There are ammino acids like l-arginine, l-citrulline, and l-ornithine to remove some of the ammonia.
Celery seed tea is something to drink in the morning to reduce acids in the kidneys and bladder.
Hope this helps....
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
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posted
I got off abx last Oct and crashed. I went to Germany for Bionic 880 treatment and saw significant improvement. Now I use the Bionic 880, exercise, sunshine, good food, juice, and some herbs. I am 95-100% now.
I like the triphala that Bob mentions. I am currently taking Humaworm. I also like the Buhner herbs and regularly take resveratrol.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
The problem is that when you make a post like this it is hard to get the real truth as the people that have recovered have left the site.
I have PM'd and talked with some of them over the years but once you get your health back and get your real life back you tend to move on from lyme boards.
Posts: 805 | From Utopia | Registered: Feb 2006
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Bob & Six,
Which Triphala do you use?....I just googled it and am not sure,
Thanks,
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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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
Plaquenil is a babesia medication and it works for some people with lupus ( they probably have babesia).Read about the side effects, it can be dangerous for your eyes. I like Dr.Z's products sinomedresearch.org.
Posts: 1834 | From US | Registered: Oct 2008
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bettyg
Unregistered
posted
bob, can you break up that one really LONG paragraph so us neuros can read? i really like reading about those who are getting into REMISSION, and provide HOPE for the rest of us. thanks.
just click pencil to right of your name in that post to open up and make it into many short paragraphs and double spacing it .... big thanks
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
lymewreck did you do diflucan with your antibiotics and how long?
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I cannot use abx anymore after a bad reaction to levaquin which left me sensitive to any kind of chemical. So I am using large amounts of herbs. Currently it is my 28 day cycle which always corresponds with the full moon (Sunday). I have a mild headache and muscle twitching in one arm, both of which come and go- and a little depression, but not bad as before.
I also have bartonella and I see some improvement in those symptoms. I could not wear socks for a long time as they hurt my shins. Now I don't notice as much problem with them. I would say I am at least staying my ground with the herbs but I use a very large amount - about 4 times the doses recommended.
I take 12 HH capsules (Zhang recommends 3) for the bart - and it should probably be 15. I take 1000mg TOA free cat's claw (samento) for lyme. Also 1000 mg grapefruit seed extract for cyst form of lyme. 70 drops Cumanda - should be more.
Reserveratrol, quercetin, magnesium, B vitamins etc for immune support. I eat no sugar or red meat and I drink primarily decaf green tea. Currently I am trying to lose weight as toxins are stored in the fat and I believe the herbs will be more effective if I am not carrying extra pounds.
-------------------- 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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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Karen, not everyone with Lupus has babesia. That has not been proven. Lupus is an illness where your own body attacks itself.
Plaquenil is not dangerous to your eyes if you keep them checked. It is a very rare side affect and can be caught before any damage is done if you see your eye doctor regularly.
The only improvement I have had during a whole year of treatment was while on Malarone and Plaquenil.
Just as it is possible that some people with autoimmune disorders could actually have LD, it is also possible that some people with LD may actually have autoimmune disorders.
I have been on both ends of this. The only relief I have gotten was treating for autoimmune. Since many times we can't prove either with testing; how can anyone say with certainty whether they have LD or an autoimmune reaction?
I was a lymie through and through, but for me the hard fact is I only improved with autoimmune treatment.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Let me see if I can respond to everyone at once. It is now almost midnight here in Switzerland. Tomorrow my oldest daughter graduates from High School. I'm very emotional. She is studying pre-med in college. She has lyme too, as do her two sisters.
Lupus and babs are two different things. You only have to have ONE lupus flare to know this. AFter 7 years of babs treatment, I came to know lupus. Wouldn't wish that on anyone. When you point to all your lymph nodes blind folded, your stomach feels like rot, and your chest feels like it has been put through the meat grinder, you know something is very wrong. And when the onselt of a new set of symptoms like this coincides with lupus blood work, very specific blood work, for the first time in your life, you know...
I was always on diflucan or sporonax with my meds, always took probiotics. Have been on plaquenil for 6 years and never had an eye problem, until the lupus cluster of symptoms popped up. Now I can't read road signs until I am under them.
Yes, you can be treated for 7 years and not cured. I have had trouble with one antibiotic after another. It's been a long journey.
I was tested for lupus almost once a year since the beginning of my treatment. Never tested positive, and never had the lupus symptoms either, until the bottom fell out 6 weeks ago and I realized I had drug induced lupus. When I stop the drug, the lupus symptoms disappear, but if I take one tiny bit of an antiobitc pill, I'm going down with lupus.
Without the antibiotic pills, there is no lupus, but the lyme/babs creeps in really quickly.
Went for a far infrared sauna for the first time in my life on Monday, and I had a lupus flare.
Not a lyme flare,...lupus. YOU can know the difference.
I know that every time I say I have drug induced lupus for the rest of my life in this forum someone will say that it is probably all lyme, and I'll have to explain this again. I am well versed in lyme, have seen Dr. H. in New York, Dr. P in Connecticut, Dr. J in North Carolina, and three other llmd ....yadda yadda yadda
I am not sure what the Buhner protocol calls for, and when I went to Dr. Zang's website, I found it not user friendly.
I looked at the website for www.lowdosenaltrexone.org and did not see lupus as something to use it for. I did see MS listed, but not lupus. If you have lupus and you up your immune system, like this drug does, it causes more immune system attacking of yourself. Not sure how this drug would help me, but would love it if it did.
I don't know if I hit every discussion point. I'm falling asleep at the computer, so I hope I don't sound blunt.
Must sleep.
Mary
P.S. Thanks :-)
Posts: 1032 | From North Carolina | Registered: Aug 2003
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D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
Systemic Lupus. Forth from the bottom in the second row.
Your assumption as to what causes the symptoms of the disease are probably not correct. LDN does boost and or correct the immune response.
Your body is likely responding to a pathogen, but not one your immune system is able to kill. It causes a cycle of damaging inflammation and tissue destruction with no benefit.
When you boost the immune response, the immune system has the killing ability given back. The pathogen is dealt with as it would in a normal person. The inflammation subsides as the problem is resolved.
Dan
Posts: 2919 | From Minnesota | Registered: Aug 2006
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
I give up. I don't think I'll mention lupus again on this board. It's amazing how we hate doctors that don't validate the evidence we put right in front of them....tests, symptoms, cause and effect...
But we do that to each other here. My momma didn't raise no dumb bunny.
Dan...you think I "assume" something.
REALLY NOW!
With an autoimmune response, you need to calm the immune system, not boost it.
God, I should send you the article I have been working on regarding chronic lyme disease and the world of lyme politics.
I've been around here for awhile. I'm not new to this. Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Lymewreck, I have had similar problems as you, or at least it sounds so. And my LLMD thinks I may have an autoimmune reaction going on also. This doesn't mean he has ruled out LD. I think what some people have a hard time accepting is that you can have more than just Lyme going on.
I think the LDN has the affect of balancing out the immune system, whether it is undereacting or overreacting. This is why it works on so many different types of illnesses.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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ping
Frequent Contributor (1K+ posts)
Member # 6974
posted
quote:Originally posted by lymewreck36: Yes, you can be treated for 7 years and not cured. I have had trouble with one antibiotic after another. It's been a long journey.
lymewreck36 - Yes, you most certainly can be in tx for 7 years or much longer and as the lady in the UOS film said, "It's been a horrible journey".
I presented with Mino induced Lupus a few years ago and had to back completely off abx for a year, then told to start again. (I'm not suggesting you do this.) During that year, my Lyme sx's cleared and now I'm stuck with what they're calling "permanent immune system damage" because of the many years of LD and the mega doses abx tx. (400mg+ Mino per day and Flagyl )
Best to you in your "journey" and please keep posting.
ping "We are more than containers for Lyme (or Lupus)"
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
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D Bergy
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posted
It was not my intention to offend you. I just have investigated this for a few years now and have personal experience using LDN. I did not come up with this off the top of my head, and this is not a completely new theory.
I could be wrong. I am never 100% certain of anything. I am going by the results of most all of the autoimmune diseases, including MS in which a boosting of the immune system should make the disease much worse than before LDN use.
Since it does not make the various diseases worse, the theory cannot be correct. Or, it is true, it would have to be a massive placebo effect that is unprecidented.
It is also more probable that a pathogen is responsible, since this is almost always the case for most diseases.
I am also going on my own results using LDN for Crohn's which is also thought to be an over active immune system that attacks normal bacteria in the intestinal tract.
If that was true, I would be in rough shape, but the fact is I am symptom free.
That is why I feel the over active immune system theory is not correct. It is possible that the immune system is not working properly. Either way, LDN helps 75% of the time. That is better odds than most treatments.
Dan
Posts: 2919 | From Minnesota | Registered: Aug 2006
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http://www.anti-agingmd.com/dhea.html#TOP An article about DHEA, which seems like it would be a good idea for many to supplement and it mentions lupus. (My LLMD tested me for DHEA and I tested low, so she gave me supplements.)
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I pray I don't have to treat 7 years. I don't think I could do that. That's so long. I'm sorry you're going through so much. I hope rife may help.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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lymewreck36
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Member # 4395
posted
Thank you so much guys. If there is such a thing on hell on earth, I think it cold be lyme/lupus.
I just got back from my oldest daughter's high school graduation.
I must sleep, and will write more and respond to the posts here.
I'm sorry for all of you who are suffering too.
I'm sure I would go completely mad if I didn't have this forum to turn to. Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Thank you so much guys. If there is such a thing on hell on earth, I think it cold be lyme/lupus.
I just got back from my oldest daughter's high school graduation.
I must sleep, and will write more and respond to the posts here.
I'm sorry for all of you who are suffering too.
I'm sure I would go completely mad if I didn't have this forum to turn to. Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Thank you so much guys. If there is such a thing on hell on earth, I think it could be lyme/lupus.
I just got back from my oldest daughter's high school graduation.
I must sleep, and will write more and respond to the posts here.
I'm sorry for all of you who are suffering too.
I'm sure I would go completely mad if I didn't have this forum to turn to. Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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quote:Originally posted by lymewreck36: I give up. I don't think I'll mention lupus again on this board. It's amazing how we hate doctors that don't validate the evidence we put right in front of them....tests, symptoms, cause and effect...
But we do that to each other here. My momma didn't raise no dumb bunny.
Dan...you think I "assume" something.
REALLY NOW!
With an autoimmune response, you need to calm the immune system, not boost it.
God, I should send you the article I have been working on regarding chronic lyme disease and the world of lyme politics.
I've been around here for awhile. I'm not new to this. Mary
You would think that naltrexone would harm autoimmune problems then right? But infact it's been shown to help with almost every autoimmune problem out there. It has never been proven that autoimmune problems are from an over-active immune system -- but rather a DYSREGULATED immune system. Naltrexone fixes that.
Posts: 80 | From Canada | Registered: Mar 2009
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
O.K. I see a doctor a week drom Thursday, and will mention Naltrexone. Now, Swiss doctors are VERY reluctant to prescribe medication. YOu can be on your death bed and they'll bring you a tylenol, or good quality water to drink!
I will also be phoning my llmd in the U.S. and will discuss this as well.
The only thing that I take offense to is someone they know my body's experience better than I do, my blood work, my experience with lyme in contrast to a new set of "lupus" related symtpoms.
Today, I woke up with the beginnings of skin sores all over my chest.
Could this be lupus, or could it be a die off from salt/C protocol I have been on for almost a week?
Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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I have had each and every thought mentioned as well as search the theories and treatments.
I did show lupus symptoms several years before lyme was found, so don't know what came first.
did 1 1/2 years of lyme treatment and co-infection treatments until in remission. Never had babs.
After remission, was hoping lupus would go away...but it has not.
This is leading me toward thinking it is drug induced for me. Most likely steroid creams or antibiotics as a kid. Cannot be sure.
I have decided to experiment, and go off plaquinel several months ago, to try the AI therapy.
Plaquenel remains deep in the tissues I have read...even years after going off. so I"m hoping to even get the plaquenel out with the AI therapy. I had only been on plaquenel for 4 months or so. It was ok, no problem, just tired of taking drugs.
Especially as I was told by my llmd, that some need it a lifetime! I"ve always been a natural type gal, before lyme and co, and this just doesn't set well with me.
If there's a chance of clearing the auto immune problem with lupus antibodies, I will try it, before resigning myself to a lifetime of plaquenel. Which I will resort to if I need to!
I am doing nothing else but AI, except an occasional detox supplement or tea. Just letting it go to see what happens naturally. This is risky, and I'm not promoting it...I just feel lead to try it.
My lupus was never very severe in symptoms when found. My reg. practitioner found it in blood work. I had been feeling very healthy, with off and on minor set backs with it. Mostly just annoying symptoms that come and gon the sun.
I have been having flairs of lupus symptoms that come and go, and change. Like the rashes on the knuckles, and joints when in the sun, and dark, molted feet, eye sensitivity to sun, fatigue in the sun, weak wrists, and loss of muscle mass, like something is actively eating my muscles.
These are not severe and debilitating symptoms, but non the less, are definatly lupus! I never had the mylar rash on the face, but during my pregancy, I did develop the pregnancy mask, which I think may be related.
I do feel the AI therapy is working for regulating my body, and do notice lots of positive things unrelated to lupus symptoms, but not sure yet if lupus will stop and my immune system regulate.
That is the big question...can AI clear Lupus and other autoimmune dysfunctions?....and I will post if this happens.
The risk with lupus, is that internal organ damage can occur without treatment, including heart, and kidney without any signs. But I feel I needed to get off all meds...especially if I think the drugs caused it in the first place.
I am learning about how dysregulations occur, and believe in my heart that it is from chemicals, drugs, and pathogens, mainly ingested or injected, that effect our intestinal /stomach area, where the immune system lies.
I also feel that we can pass these to unborn children. I do not think bb is the only problem.
Those that treat bb long enough usually come to the same conclusion... Diagnosed with bb , for me was the catalyst to educate myself , get treatment, and begin finding out what my other problems are.
We shouldn't argue, what comes first, but realize it's a tangeled set of things, and learn from each other.
I would love to keep up with those of you with lupus and compare notes as we all progress.
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Shosty
Unregistered
posted
My daughter and I both have been diagnosed with lupus, after treatment for Lyme. I was on antibiotics for 6 yersr, but, luckily, our daughter was only on for a little more than one year.
Autoimmunity does not mean an overactive immune system, but rather, one that is turned against one's own body. Suppressing immune function w/meds is intended to suppress that "self-attacking" quality of the immune system, and does not mean that the immune system originally was overrevved, but that it was misdirected.
Lymewreck and ping, did you have positive blood work in addition to ANA?
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