richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
I just don't know what to do at this point. 10 month into abx treatment, including Babesia treatment and now Bart treatment, and I think I am worse than when I started.
The depression and the thoughts of not continuing get stronger all the time. I just can't escape the pain. I took a handful of Aleve and itr did nothing. Why?
I noticed I was wetting better for a good while, but have since gone down hill. Life is no longer a joy and instead is nothing but hell. My personality has changed a well.
My LLMD can't figure what is going on. They felt I should be just abut better by now. I am on the verge of giving up and going to a pain management center. I think I need morphine or something strong.
The doctor said part of the problem is that these infections kick off other health problem that may become the new source of pain and discomfort long after the infection is gone.
I am starting to wonder why this is all happening and what is causing what.
Thye think the infection caused my MGUS and they are thinking this is very common in Lyme patients and a reason many are not getting well - must treat the MGUS.
-------------------- 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
Approaching my one year mark myself. I always wonder if I got aggressive treatment if I'd still be in the boat. Well you're not alone.
Posts: 743 | From New York | Registered: Apr 2009
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Richedie,
Has your doctor treated you with any antiparasitics for parasites and worms? Has he considered these as co-infections?
I didn't start getting well until I went after these pathogens. I was on antibiotics for 4 yrs.
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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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
no, what meds?????
-------------------- 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
No, you are certainly not alone. I am approaching my 1 yr mark and no changes.
Posts: 847 | From upstateNY | Registered: Dec 2007
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
I'm sorry you're so down. Lyme treatment takes a long time unfortunately. Most times it takes longer than just 1 year of treatment.
I'm almost at the 2-year mark... I have good and bad days.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
Richie, have you tried any meds with better Blood Brain Barrier and CNS penetration? Minocycline, or IV Rocephin or similar?
The majority of success stories I have read about (in forums, books, and medical studies) have taken an average of 2 years to start turning the corner. Many people I have read about said that they almost gave up because they weren't feeling any better for a year or more, and yet they decided to stick with it for that extra year or however long, and started coming out the other side.
This bug takes a heck of a lot longer to treat than most others - it has a ridiculously long reproductive cycle, comparatively, and is adept at evading treatment. But if you stick to it, you can outwait the b***ards.
The Lyme organism has a much longer reproductive cycle than other bacteria. When the spirochete reproduces, as in other bacteria, they are susceptible to antibiotics. The antibiotic treatment length for bacterial infections is generally determined by how many reproductive cycles are needed to be treated for the organism in question to finally be put into submission or to be eradicated.
As a general example:
Lyme bacteria takes an average of 8-12 hours to complete a reproductive cycle (in vitro - in vivo could be longer, especially in patients on any anti-Lyme regimens), compared to many bacteria which produce a new generation every 20 minutes.
If you extrapolate the numbers, say you are given 2 weeks of penicillin for Strep throat to kill it off effectively. To treat for the same number of reproductive cycles of Lyme would take about 1.5 years (about 504 days) of constant (effective) antibiotics.
This theoretical treatment length also does not account for the complexities and difficulties of the Lyme pathogen, as Lyme is a far more biologically complex and intelligent organism than Streptococcus or any other bacterium, as far as I have read. Some of these complexities include:
antibiotic evasion, efflux-pump(s) (which push out the antibiotics), immune system evasion, sequestering in deep tissues, CNS, and Brain, which are very difficult to reach with antibiotics, cystic and L-forms, intracellular forms, biofilms, potentiation of virulence via co-infections, and genetic mutations,
among other factors, which all demand even more thorough treatment and tenacity. Lyme takes a long time to treat, bottom line.
You might want to try reading through the success stories threads - they can be very helpful in gauging how long it generally took people to reach remission from Lyme Disease and co-infections:
posted
I just reached the 5 month mark. It's tough, but I'm still hopeful.
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
18 months here and while some early improvement, still unable to drive and mostly homebound. But I was undiagnosed for 18 years!
I intend to get out of this and you will too, keep the faith!
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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posted
I agree with the parasite comment. I've had HUGE parasite problems and am still battling them. I think parasites are a continual battle until our immune systems are fully recovered.
I took Humaworm, two rounds, getting ready for third round.
I found enula was the biggest help with this, also hits babs.
Other good ones that help with parasites - triphala, uva ursi, plant tannins, oregano oil. I will take parasite herbs as continually as possible.
Be sure you're getting probiotics to build up the good stuff.
Try a Hulda Clark liver cleanse and coffee enemas. I've gotten more energy from both of those. They seem to take off a bit of the toxin load.
Try to move every day .... exercise as possible, hopefully for an hour (even if it's light stretching and a short walk). This keeps the lymph flowing.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
I'm at my 2 year mark of being diagnosed.
Since then I have found out that I have Bartonella,Babesia,Mycoplasma and Addisons Disease.
The Addisons Disease I just recently found out that the Lyme damaged my Pituitary Gland and thats what caused it.
I am on agressive treatment... I DON'T have any good days. In pain everyday 24/7.
Or as I call it "cruise control"....
I just take one day at a time. There is no quick fix for this disease or any miracle pill. It takes a long time to get better.
Also I found out that along with ABX, supplements are much needed....
Best Wishes!!
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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posted
I just passed 1 year too. Some days are better, some are worse, but most are the same.
My LLMD told me when I started in May 2008 that I'd probably be off abx by the coming Christmas, or at least on a maintenance dose. Didn't work out that way. After some initial improvements I've just plateaued and then started this roller coaster that seems to run in cycles. I take the cycles to be herxes and that reminds me that I'm doing the right thing by sticking it out.
I suggest you start keeping detailed track of your symptoms. It can be hard to see improvements over the months.
Also... make sure your addressing things from all angles. Pharma, herbal and dietary. NO single approach is enough.
richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
I do keep keep detailed track of symptoms and that just shows me even more how i am now going down hill.
For the lonigest time my feet were feeling more and more normal and the bad days were fewer, then suddenly the arm continued getting worse and spreading and the foot is as bad as ever and does not let up.
Everyday after I eat lunch I sweat terribly for a while. Just mentioning because I just ate lunch.
My doctor and her patients I have talked to all said it takes about a year to get better.
-------------------- 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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beths
Frequent Contributor (1K+ posts)
Member # 18864
posted
Hang in there. My first year I was so sick. I should mention I started treatment 3 months after bite. Around 18 months I turned the corner..went back to work part time. I feel much better..have some even normal days! Some really bad "patches", but then I come thru the other side. I don't think it's a straight up hill improvement..many dips.
Hang in there, treat yourself well, you will get there.
Posts: 1276 | From maryland | Registered: Jan 2009
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posted
Find "Lyme Tracker" post and print out his chart - you can modify the symptoms to fit your own. It's really a very good chart. I have always said "I need to chart5 these symptoms" but never did.
Agree that it is important - should help your LLMD rx the best abx.
I hope you start feeling improvement soon!
-p
Posts: 641 | From So. CA | Registered: May 2008
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
The problem is, I won't be able to afford much treatment beyond one year. We can't do it, our daughter's school is getting expensive and healthcare costs keep rising.
Right now, my parents are helping us bur can't expect them tp cover the doctor visits for years. Maybe I'll have to go herbal.
Either way, I have to find pain reief, I can't take the pain any longer. The closer I get to one year treatment, more and more friends and relatives say it is in my head and ignore 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
bump
-------------------- 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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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
Riche -
I don't know much about MGUS, so if you could please explain a bit for me what you know, and what your Doctor(s) told you, I would be grateful.
I am confused, because all of the reading I have done on MGUS said that it is not treated, but can be indicative of need for further investigation of a cause if the patient has suspicious symptoms, which is rare in MGUS.
If in your case, the Lyme is causing MGUS, which does appear to be a possibility in many cases, then you would be treating the Lyme as the causative agent of that test finding.
The literature I read (though it wasn't exhaustive by any means) said that an MGUS is not normally indicative of anything wrong (it was termed as a "normal finding"), but that it does require monitoring because some people (less than 20%) with MGUS can go on to develop multiple myeloma, etc.
So, I guess I am confused as to what your Doctor plans to treat your MGUS with.
As for pain, many of us here would not respond to over-the-counter pain medicines. I am on Vicodin, others are on stronger pain medicine, to help them get through the day and have some quality of life. I would not be able to leave my bed, or stop from crying, if I had no pain medicine - I am in absurd levels of pain.
As it is I take just enough to be able to get out of bed on a good day, and sit at my computer desk. Sometimes I leave the house and stay in the car at the grocery, etc. It affords me a level of hope and sanity.
Chronic pain can be a huge factor in becoming discouraged with treatment and can cause depression. It is not humane to leave a patient in pain, especially chronically, in my humble opinion. It really must be treated if at all possible, so that you can have some hope, some quality of life, and also so that your body is not harmed from the constant state of pain. It can actually cause damage.
Can you possibly see a pain specialist, or get a script for a generic pain medicine from your PCP or LLMD? It might really help you through your treatment.
Also, are you addressing detox? This can be another major factor as to whether your treatment is effective as possible. If you are not easing (supporting) the detox process, or addressing other possible areas of toxins (diet, etc), it can really increase your pain and other symptoms.
richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
Thanks,
All I know is more MGUS researchers are saying it is triggered by infection or virus. In fact one oncologist I talked to said if people with Lyme were tested for MGUS, they would be shocked at just how many have this as well!
The fear is that even if the infection is taken care of, the MGUs can spiral out of control once started, regardless of whether the underlying cause is gone or not.
I am supposed to keep seeing a hematologist to keep an eye on my numbers but I don't care any more. I hate doctors. The last doctor I will see is my current LLMD.
Every doctor I have seen in my area in PA treated me terribly telling me this can't be Lyme. the heck with them. I'll take my chances.
MGUS is one of those conditions like Lyme. Everyone who has it tells me they have symptoms of pain and tingling, yet the doctors deny! Doctors look at you like you are crazy if you say you have pain with MGUS. Yet, all the support groups say otherwise.
My doctors also tell me that my elbow surgery could have started the MGUS! That is when my hell began, after surgery.
I had elbow surgery for tingling in my hand and then two weeks later my hell began. My LLMD thinks the surgery was for nothing and that swelling in the elbow was causing the pinched nerve symptom.
I am starting to wonder if I even have an infection even though I had three positive Babesia tests from Igenex.
My LLMD does not see a reason to treat MGUS as people with MGUS just have to go about life. An oncologist I saw wanted me on steroids to supress my immune system to get the MGUS symptoms.
This was weird, because he said MGUS never causes symptoms yet he wanted to treat just to see if it helped.
My doc only wants me taking over the counter. I took 6 Aleve this morning with no effect.
The good pain specialists in my area do not take insurance and it is already tight trying to afford the LLMD. Detox? My doctor and I agree, eating well is good enough. Detox is over rated!
-------------------- 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
Hey Richie, your neighbor here in NJ again.
Two years, my friend, two years.
For me, 14 mos 400 mgs doxy DAILY; then 10 mos 300 mgs MINO DAILY.
Now I pulse mino first week each month.
It took that long - two years. Tho I did get much better from my worst, along the way, so I had encouraging signs.
But - TWO YEARS - and I can't say it's totally gone even now - just a million times better, I have my life TOTALLY back now - and that any symptoms are quite liveable for me. Now I get the feeling that the tail end of this is going to just be the LD petering out -
onthemend
Posts: 314 | From east coast | Registered: Oct 2007
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Maybe you need to revisit Babesia treatment? It looks like you've done some but are currently off. Babesia symptoms can come back quickly.
Posts: 984 | From San Diego | Registered: Nov 2006
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
quote:Originally posted by onthemend: Hey Richie, your neighbor here in NJ again.
Two years, my friend, two years.
For me, 14 mos 400 mgs doxy DAILY; then 10 mos 300 mgs MINO DAILY.
Now I pulse mino first week each month.
It took that long - two years. Tho I did get much better from my worst, along the way, so I had encouraging signs.
But - TWO YEARS - and I can't say it's totally gone even now - just a million times better, I have my life TOTALLY back now - and that any symptoms are quite liveable for me. Now I get the feeling that the tail end of this is going to just be the LD petering out -
onthemend
Do you still have the terrible pain????? That is the killer for me!
I saw my doctor today and my Babesia test came back positive again!
-------------------- 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
bump
-------------------- 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 just hit the one year mark as well....I was hopeful too that by this time I would have more improvement.
I'm not sure what to do either...in some ways I feel better...some ways a lot worse.
Posts: 345 | From East Coast | Registered: Apr 2008
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
quote:Originally posted by Nexis: Richiedie,
Which Babesia test was positive? The Microti or Duncani?
I forget, I'll have to double check at home. Babesia FISH was positive too.
-------------------- 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'm so sorry to hear you are having such a hard time.
-------------------- Take care -kelly --------------- Posts: 330 | From TX | Registered: Mar 2009
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
There is a pain management place near me and the guy is well versed in Lyme disease and even has patients he treats for Lyme with abx. However, the first appointment alone is $400 and I already pay a boat load for my LLMD. My LLMD only gives me herbs for pain.
-------------------- 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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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Hi~ If you are not getting better with lyme/co-infections treatment, please consider getting tested for HHV-6, Chlamydia pneumonia, EBV and enterovirus.
HHV-6 is best tested for at Focus Diagnostics lab. Enterovirus at ARUP lab.
The others it doesn't matter so much, but I use Focus lab.
The symptoms are the same as lyme, but the pathogens need treatments other than lyme treatment.
If you aren't getting better, get checked out for these other things!
A friend of mine is almost well, I am doing the best since I got sick (5 years ago). I'm not well yet, but I am hopeful that I am moving in the right direction.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
Hey, at one year of treatment I was just so-so. At 18 months of treatment I was a little better.
I just completed working a full school year (teacher.) Last August I wasn't sure I could make it the week.
Progress is so slow. I did have a few short-lived relapses, too.
Hang in there.
CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
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