posted
Hi, it's been exactly a year since I was diagnosed with Lyme and Ehrlichiosis and began treatment. Nothing, I mean NOTHING has worked. No herxes, no nothing. I've just slowly been getting worse. WHY is nothing working? This is incredibly distressing and I'm filled with despair!
My symptoms:
Head-related problems:
Constant "woozy" feeling
Daily migrating headaches (not migraines)
Head pressure
Head stabbing sensations
Twitching/Fasciculations: Everywhere in the body
Vibrations: Mostly in the calves
Malaise: Often and very, very bad
Very occasional brief pains: Throughout body
Treatment for the past 12 months consisted of:
Doxycycline
IV Ceftriaxone (12 weeks)
Tindamax
Flagyl
Minocycline
Rifampin
Biaxin
Bicillan shots
Mepron
Obviously not all of this was taken at the same time. I switched LLMDs 3 months ago and thus far he hasn't been able to help either. I think he wants to treat me for candida via IV for the next line of attack.
I have no idea how long I've been carrying this disease. I'd say at least 3 years. Then in August 2008, things really got bad and I spent the next 6 months seeking a diagnosis.
I don't know what to do. Should I give up on antibiotics completely and look into other possibilities like Rife? Going at this alone is making me incredibly nervous. I just want to see at least 5% improvement...something!
What a horrible, horrible nightmare. It's incredibly hard to get through each day, let alone each hour and minute. I can't bear to think that I won't get better. This absolute hell.
I appreciate any thoughts you might have. Thank you...
IGM 31 IND 41+ 83-93 IND
Posts: 57 | From Florida | Registered: Jan 2009
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Keep treating! In the "Under Our Skin" video the ranger says it was after the 3rd year of treatment before he started to see improvement.
That keeps me going!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I don't want to make you feel depressed, but I feel the same way when each anniversary comes around. I'm almost a decade into treatment, and I've tried all the options that ILADS physicians use. I'm still as sick as I was. However, the Babesia therapy has suppressed (or potentially killed) the infection. I've also discovered a few drugs that reduce symptoms but do not do so enough to allow me to be fully functional or to even go outside enough.
Don't quit though, ever. Take it to the bitter end, even if you never win.
You are in the very early stages of treatment, so my feelings and story don't apply to yours. My case was extremely complex, with multiple co-infections and other factors (Like steroids), contributing to the lack of recovery.
I will find an answer, but it's going to take some extreme experimental measures.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
sutherngrl, yes, I remember the ranger in the movie. I wonder if he was treated intravenously the whole time...
METALLlC BLUE, your story is disheartening to say the least. I've read some of your other posts and I'm amazed by your perseverance. I suppose you've already tried Rife and the Bionic 880? One option always on the table is that stem cell treatment in India (that is, if you can afford it).
But at what point should one walk away from antibiotics and look into other options? I know they're some who don't respond to antibiotics at all but this doesn't seem to be the norm, at least not what I've read on this board.
Posts: 57 | From Florida | Registered: Jan 2009
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Earprints,
Well, just to let ya know that you're not alone, I'll chime in here..I'm 28 months into treatment and am no better, perhaps worse than when I first started treatment.
Like you, I've 2 very positive WB's (9) bands IgM, (3) IgG. Also babesia WA-1 positive, CPN positive...bartonella clinically.
To be fair, my first 1 1/2 years of treatment were gross undertreatment...children's doses.
I have been on IV tx 3 times (not always what it's hyped up to be).
Currrently on IV Invanz and oral Alinia and I am feeling some 'shifts'...still cannot drive, homebound (most of the time).
There are actually many here that are in this situation, we just tend to stop posting about it so much.....
Don't give up. The trick is finding your magic rx.....ever thought of suggesting Bactrim Ds to your doctor? Combined with Biaxin or something else?
best, feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote:Originally posted by earprints: sutherngrl, yes, I remember the ranger in the movie. I wonder if he was treated intravenously the whole time...
METALLlC BLUE, your story is disheartening to say the least. I've read some of your other posts and I'm amazed by your perseverance. I suppose you've already tried Rife and the Bionic 880? One option always on the table is that stem cell treatment in India (that is, if you can afford it).
But at what point should one walk away from antibiotics and look into other options? I know they're some who don't respond to antibiotics at all but this doesn't seem to be the norm, at least not what I've read on this board.
I have not done Rife or the Bionic yet. I am trying very hard to start the Bionic, but gathering the necessary tools is proving difficult. The U.S. Government is not very compassionate about gaining access to "live" infectious diseases, including borrelia burdorferi spirochettes. I need a number of tools that I must get from Mexico.
The point at which one walks away is after they've tried all of them, or at least all classes of those which have proven to be the best of each class. It also should be noted that the best combinations should be used, not just the class. One drug from one class, such as Zithromax may be superior when combined with Tindamax or Malarone, while another like Biaxen may not. Vancomycin may be effective where Biaxen and Zithromax fail even while in strong combinations.
So, it can take many years. By my estimates, if the patient is highly aggressive, it should take no more than 4 - 5 years to explore all that the best LLMD's have to offer for drug therapies -- that is "maximum."
If a patient is giving monotherapy, this is a big flashing red light, especially if they haven't improved within 2 years.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
Have you been checked for other co-infections ie mycoplasma, cpn, strep etc?
I feel the same as you. I have been in treatment for just over a year now and not really seeing improvement. I have very very high levels of strep bacteria in my body which my LLMD and I both think is my biggest problem right now.
Despite being on abx for the last year the strep hasn't gone down. I really think that is what is standing in my way of making progress. So my LLMD has decided to focus mostly on the strep now. Hopefully we can find something to get rid of it.
Anyhow...that is why I asked about any other co-infections because they can really hinder progress. For me the strep seems to be holding up the show.
I really hope you start to see some sort of progress. Believe me...I know how frustrating it is!
Take Care! Pam
-------------------- Sick since 10/2001. Tested CDC positive for Lyme 10/2008 through Quest and Igenex. Started treatment 1/2009 with LLMD. Lyme, Erichilosis, Chlamydophila Pneumoniae, Q Fever, Strep Syndrome and probably a few others I am forgetting. Posts: 451 | From Virginia | Registered: Feb 2009
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Pam, I am very interested in what your doctor has given you for the strep.
When I first went to my LLMD I had systemic strep. That was 2 years ago. I don't think we ever tested it again because he said all the zith I took for 4 months straight would have cleared it.
posted
Sutherngrl...I would definitely get rechecked! There are plenty of people who have strep despite antibiotic treatment for lyme.
I do have a hard time tolerating abx so that makes things complicated.
I was on Omnicef for quite a while.
We also tried zithromax with the Omnicef but the zith lowered my potassium too much despite prescription potassium.
I have also been on doxycycline. I am still on that.
I tried Rifampin in combo with the doxy but couldn't tolerate the rifampin.
We haven't done penicillin because last time I took it (15 years ago) I was allergic. I may ask if we can give that a shot though to see if I am still allergic or if I really even was allergic before.
My LLMD is considering trying clindamycin but she is really hesitating to do that since C. diff can be a big problem with that and I have had C. diff before.
I have also been taking a homeopathic for strep as well.
All this and the strep is still out of control. I know other people who have had much more in the way of antibiotics who still had a problem with the strep. I know some people have mentioned being on penicillin for a long time and still having strep.
I would definitely ask to have it checked again. Some doctors don't realize how drug resistant some of this strep can be.
Take Care! Pam
-------------------- Sick since 10/2001. Tested CDC positive for Lyme 10/2008 through Quest and Igenex. Started treatment 1/2009 with LLMD. Lyme, Erichilosis, Chlamydophila Pneumoniae, Q Fever, Strep Syndrome and probably a few others I am forgetting. Posts: 451 | From Virginia | Registered: Feb 2009
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posted
Feelfit - I will definitely bring up Bactrim. Down the road, I might have to try a different IV antibiotic like Invanz. I've never heard of Alinia.
METALLlC BLUE - I hope you're able to start the Bionic soon...
The combos I've taken so far have been: Doxycycline Doxycycline, IV Ceftriaxone Doxycycline, IV Ceftriaxone, Tindamax Doxycycline, IV Ceftriaxone, Flagyl Doxycycline (much higher dosage) Minocycline Zithromax Zithromax, Rifampin Rifampin Biaxin, Mepron, Bicillan
So I was treated with monotherapy for some of that time which probably wasn't beneficial. What other combos should I try?
Pam08 - Actually, I forgot that I also tested positive for an old infection of Mycoplasma Pneumonia (IGG.) Same for EBV. I tested negative for CPN. Strep is definitely something I need to look into. I have my monthly visit with my LLMD tomorrow morning and I'll bring this up to him. It's strange, it seems that my infections are all `old' so it's hard to tell whether Mycoplasma, for instance, is causing my symptoms or not.
Posts: 57 | From Florida | Registered: Jan 2009
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posted
Earprints, There's so much to say and we all try to give our best advice but the truth is we are all different .My wonderful llmd told me once you could line up 10 patients , they would most likely have different symptoms, and so each would require a different treatment. You will have many ups and downs, things will work then stop working, just make sure you have the best Dr. you can find, who keeps up on everything, LISTENS to you and treats accordingly and is also willing to work with you if you want to try and explore naturals, eastern meds, . I always run my latest suggestion by my Dr. .
His answer is if it works go for it, if not stop. I was 15 to 20 yrs. undiagnosed,{ your supposedly garden variety hypochondriac,} til I got diagnosed. It took a minimum of 3 years before I had any quality of life. I lost every and almost quit so many times. Right now I'm down again, but I have experienced remission, it was wonderful while it lasted.
Forget about your old ways of doing things you are in the fight of your life. Sorry I can't be more upbeat, It ain't pretty. People here are very helpful. Use them. It helps them too. God Bless Jasek
Posts: 161 | From midwest | Registered: Jul 2007
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posted
If I was in your position I would be adding in herbs. Especially the Buhner herbs -- if you buy powdered herbs by the pound and use a capsule machine it can be a cheap and effective way to boost the antibiotics.
Hubby has done IV Rocepin and IV Primaxin, but he herxed from the Buhner herbs -- especially the andrographis. Especially if you have never taken many herbs before start with much lower doses than listed in the book. Just one capsule per day of one herb to start and go from there.
I would also try adding in monlaurin or lauricidin for viral issues. An adaptogen such as eleuthero or andrographis or rhodiola could also improve adrenal and immune function.
I know there are patients who don't herx much, but it is just hard for me to relate to since hubby used to herx with every dose of antibiotics for the first 6 years or so of treatment. But now finally after he got rid of the babesia he can take multiple drug and herb combos and treat multiple infections at the same time.
If you can afford it I would also get a blood slide from either F lab or Clongen -- you may have babesia or bartonella that needs much more aggressive treatment.
This is not medical advice, just my opinion based on hubby's experiences.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Treating for parasites and worms using antiparasitics is imperative if you want to get well.
They are a co-infection of lyme disease and have been greatly ignored. Check out
Burgdorfer found Adult Filarial Worms in the ticks he dissected.
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
Jasek - Thank you for your message. It is, indeed, the "fight of our lives." I hope you don't have to wait too long to send this dreadful disease into remission again.
seibertneurolyme - Yes, herbs. I haven't really used them yet. I read 'Healing Lyme' and it's definitely something to try. I have to bring it up to my LLMD. I wonder if going on an herbal protocol would conflict with antibiotics.
I was on Monolaurin for months. It didn't do anything for me. My new LLMD has me on Amantadine to help wipe out any viruses I might have.
I feel like all these pills I'm taking are just placebos! Not even Naltrexone is working, the supposed immune wonder drug.
Is the blood slide test the most conclusive test there is for Babs and Bart?
glm1111 - I went to Jetti Katz tropical diseases lab in Manhattan a couple of months ago to look for parasites. Nothing was found at all. Nevertheless, I'm thinking of trying Humaworm which a lot people on this board seem to be talking about.
Posts: 57 | From Florida | Registered: Jan 2009
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Perhaps you should also consider getting tested for various pathogens: HHV-6, EBV, Cpn, and enteroviruses. I have been treated for a number of these pathogens, and March was my best month in years! Am I well? No....but much better than I used to be...certainly functional...driving, housework, even some yardwork (which was hard to consider before)...almost done with writing a book...feeling like life is more enjoyable...
posted
timaca - I was tested for a lot of viruses including the ones you mentioned. So far, only EBV showed up. How were you treated for these viruses?
I just saw my LLMD this morning. He's now got me on IV Vitamin C twice a week to boost my immune system. We'll see what happens...
Posts: 57 | From Florida | Registered: Jan 2009
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
It's important that ARUP lab is used for enterovirus...other labs don't catch it as well.
With EBV, here's some info on what might be considered a chronic infection:
posted
I'm going into my 4th year and I've also experienced nothing and have continued getting worse.
I am on my 3rd LLMD and have been undertreated by all until last November when I was allowed 3 months of IV Rocephin.
Since I didn't improve in that time, he is allowing me to have IV Doxy and I have been on that for two weeks. No change yet.
If this doesn't work, he says he can't help me anymore. I have already traveled way out of state (2nd LLMD) to get help, but that was low level abx, 1 at a time.
I have irreparable damage. I am full of arthritis, my neuropathy gets worse all the time and my brain function keeps getting worse.
I have lupus, lost my gallbladder, had seizures, have Raynaud's, full-body pain, fatigue, etc, etc. If I ever do get better, what to hope for now?
I get to keep the arthritis which is destroying my spine, knees, hands, wrists, feet. But I would like it to stop growing.
I get to keep the neuropathy, but would like it to stop growing. Just having the neuropathy is a horrible thing. It is so painful and difficult to deal with.
I get to keep the lupus, right? Full-body pain and fatigue go away? I want my brain back - REALLY bad. And the rest?
So, I understand what you are going through because I am going through the same and I don't know quite where to turn since I'm sure my current LLMD won't let me be on this for long.
I've tried to read what others have written here and I only understand about 1/2 of it. There is no way I could keep track of all of this now. How to know what is the right thing to do? I can't waste any more time on taking another bad step.
Sorry about whining but I am lost. I am a difficult case and I am hearing that no one in my state can treat difficult cases.
I have to go east but our financial situation is very bad. We're lucky we still have a house. And I am supposed to put my family through more hardship to get what? Is it even worth it at this point?
Posts: 45 | From Grand Rapids, MI | Registered: Aug 2007
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
lucecaboose~ Have you been tested for HHV-6, EBV, Cpn, enteroviruses, and other tick borne pathogens? You've had a lot of antibiotics (4 years), so perhaps it is not a bacterial infection you are battling.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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