lymebytes
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posted
I am wondering if you or someone you know has been on abx longer than 3.5 years and aren't well yet. I have been in awful pain and many other symptoms for 4 years w/little change really and have treated on abx 3.5years.
If anything brain fog, internal tremors have appeared in the last 2 years - I first had "only" excruciating pain..psych symptoms came later...all are brutal.
A friend of mine who has had LD 20 years (with hardly NO treatment and well now) said I should be MUCH better by now after treating "so long" on abx and if I am not improving I should quit abx. She made me feel like a freak for treating so long and still feeling so horrible.
I have read about many people who take 7, 8 or more years on abx to get better.
What is the longest you or someone you know took to get well in treatment or show significant improvement?
posted
Are you treating Lyme only? Did you take cyst busters? I think everyone with a Lyme diagnosis also has other infections. Bartonella, babesia etc. Have you treated for any of these?
Posts: 383 | From Ar | Registered: May 2007
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lymebytes
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posted
Yes, co-infections are treated and gone, made small difference. I am being re-tested for the 10th time for Babs. It always comes back negative.
BoxerMom
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posted
Have you tested for XMRV? I know of a woman who treated for 14 years with all the well-known Lyme docs with no substantial improvement. Recently tested positive for XMRV.
posted
Testing for coinfections is not good. I never tested positive for coinfections except by ART. Remember to go by symptoms. Even coinfections are a clinical diagnosis.
My babesia and bartonella tests were always negative, but I clearly had them both judging by my response to medication.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Melanie Reber
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posted
Six makes an excellent point. Hopefully, your doc will treat based on symptoms and response to meds.
I have been in treatment now for 7+ years, off and on. Have hope... I feel better now than I have in ages. Working 45-50 hrs and trying to get back to a productive life.
Perhaps you just haven't hit on the right med combination yet or haven't stayed with it quite long enough?
glm1111
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Member # 16556
posted
I was on antibiotics for 4 yrs and didn't start making any progress until I started tx for parasites and worms. They play a HUGE part in Lyme disease. Check out
This is what came pouring out if me after I started treating with antiparasitics and salt/c.
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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lymebytes
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posted
Thanks for responses. One (well known) LLMd I have seen, goes strictly by the test results from Igenex. Another I have seen, with not as much experience goes by symptoms. Both I think are at somewhat of a loss for the lack of improvement, even though neither have actually said it, you can see it when I talk to them.
I have been wondering A LOT about parasitic infection lately.
One test that has never been negative is Lyme.
I have had a hard time with high dose abx because the pain levels for me are intolerable, but I have still done my share and just don't get why I don't see real, lasting progress. Like I said, I do wonder about parasites or even babesia.
Melanie - if you see this..I know you did Bicillin not long ago, is that what helped you? I am on Bicillin now, it has a weird effect, making some symptoms better and other worse, like cognitive sx get much worse.
merrygirl
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posted
It took a good 8 months of bicillin for me to notice a change. 14 months of bicillin I stopped, I am currently awaiting my xmrv test results
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lymebytes
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posted
Merrygirl, same thing w/my son - it took many months before he noticed improvement on Bicillin, he is currently well now. I remember for months he said, "this is not working" - but I urged him to go on, knowing it can take time. Although his symptoms were different than mine, I credit Bicillin for getting him well. I have done them before, but only lasted 4months on them and some things changed, not a lot. But I know I didn't give it enough time. This time I hope I can do them 6months to a year.
Afte 14 months when you stopped, did you notice significant improvement?
XMRV - I have been reading about, but don't know a lot about it. It is viral??? What can they do to treat it? What symptoms does it cause? Any websites to read more, I googled, but only found little info on wiki. I am going to try again. This is something neither LLMd has ever mentioned. So I am going to ask definitely.
Haley
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posted
Lymebytes have you done any treatment for Babesia at all?
I don't even know what my test results are on my Babesia but when I started Mepron I felt that it made a huge difference for whatever reason. It's still too soon to say if it will be the one variable that will make the difference.
If you are only treating bacteria, you may want to try something that hits the protozoans. Parasites would be included in that group.
Also you may want to test for a virus if you have not already done that.
Keep us posted.
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lymebytes
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posted
Haley, No - I haven't. Although very interestingly, when I did 6 weeks of Artemisinin I felt my best. Then out of nowhere the herx from hell (I guess) started - all I know is I felt like I declined rapidly at week 6 and felt like I was setback badly. I acquired new symptoms from that round of Art that was last summer, I still have now. Just what I needed more symptoms.
But I can't shake how good Art made me feel..for awhile, then absolutely felt like a brutal setback. So I stopped.
Extensive viral testing was done 3 years ago - many were positive. A retest about a year later showed many of the titers had dropped significantly, most IgM's at normal. I still take Valtrex - which I know is what really helped that.
Other tests that were negative, chlamydia, mycoplasma, giardia, toxoplasmosis and quite a few others.
But as far as symptoms, if I had to narrow it down big time, bouts of horrible brain fog (includes feelings of insanity, anxiety, weakness, warm skin, nausea) and excruciating peripheral neruopathy plague me - still suffering a lot. Definitely not "living" life at all, struggling through each day miserably.
Dekrator48
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posted
lymebytes,
I think the treatment that makes the most sense under the cicumstances is a nice long course of Mepron, Zithromax, Artemesia and perhaps egcg (active ingredient in green tea extract, decaf).
Can you speak to your LLMD about it soon?
Dr B says in his paper that tests are insensitive and problematic. He says there are at least 13 species of Babesia, perhaps as many as 24, yet we only have tests for 2.
He also says that Babesia will make Lyme treatments less effective.
It does not make sense to depend on a Babesia test, just like we cannot depend on a lyme test.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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lymebytes
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posted
Thanks. I am all too familiar with Dr. B guidelines and I have thought time and time again how he says lyme tx is less effective if you have babs. I really have wondered even though (3 total) LLMd's are insistant I don't have it.
One of them would be willing to treat me for it if I insisted. At this point there is nothing to lose that I am aware of.
It has worried me that Igenex only tests for 2 strains - I have wondered if I have some other strain they don't test for.
I also have Dr. S book on Babesia, I need to read it.
This thread is really making me wonder if Babs is holding up progress. Now to convince the LLMd's. I just don't even have the major "classic" symptoms of Babesia, but I am going to let them know I am tired of suffering we need to at least try something else.
BoxerMom
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posted
XMRV is a rodent retrovirus. The host is the mouse that gets bit by the tick that bites the person and gives her Lyme that lives in the house that Jack built. Haha.
XMRV hit the news last fall when it was implicated as a possible causative factor in Chronic Fatigue Syndrome. Gee, I wonder what the other causative factor could be?
There is only one lab that does reliable XMRV testing, but I hear it's accurate. Treatment would be anti-retrovirals, like HIV drugs. That's why this is so important. It's a class of drugs we don't take!
I'll add to this thread this evening with some links on XMRV.
lymebytes
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posted
Boxermom, really very interesting. I don't live near deer and completely believe I was bitten in a nearby field that is over run with mice. So I know the ticks (that are in plain site) feed on them.
I just found what seems to be a very informative site about it...tell me what you think. It tells which lab to get tested at as well and has a link: http://www.wpinstitute.org/xmrv/xmrv_qa.html
I hope you find an answer and make better strides toward recovery soon.
Posts: 702 | From North Eastern USA | Registered: Dec 2009
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Melanie Reber
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posted
Yes, I am still doing Bicillin 3 times per week. At this stage in the game, it has helped me tremendously. You need to also be on a cyst buster with Bicillin. Could be what is causing your cognitive syx to flair? flare? hmmm... long day. Posts: 7052 | From Colorado | Registered: Mar 2003
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lymebytes
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posted
Melanie, I am so happy Bicillin is really helping. How long were you on it before you noticed it was helping?
Problem w/cyst busting is the intolerable nerve pain that is literally in every part of my body. I tried and OMG, the nerve pain nearly sent me over the edge.
I think I probably would have made strides if only the nerve pain wasn't so insanely high...I can't tolerate treatment, I simply cannot... it has been a nightmare, awful and that is an understatement. There is no more room for more pain.
The only way I know of to "cyst bust" is to stop abx for awhile.
All the comments seem to indicate everyone had signifcantly progressed at the point I am at.
I am seriously thinking about seeing mainstream MD's again and seeing if I have been completely misdidagnosed or maybe it turned into something else, MS?
It blows me away that not one person here seems to have not progressed. So everyone is progressing it seems? The responses have made me really wonder if I should get more testing. It has been years since I saw a mainstream Md, maybe a fresh perspective is needed.
map1131
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Member # 2022
posted
Interesting info about the mouse conection to XMRV. My illness started in '98 when we purchased a lake home that we discovered was filled with mouse droppings.
Mouse droppings were so thick that they clogged my vacuum after cleaning 1 1/2 rooms in this house. I used a Rainbow vacuum cleaner, which operates with water used as filtration system.
I dumped mouse poop and dirty water for two days. I test highly positive for many viruses and bacterial on that list.
The CFS and fibro symptoms are the ones I just can't seem to shake after all these years and treatments.
Interesting indeed!!!!!!
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
lymebytes - I don't have much to add since I am so new to all of this.
My son tested negative for Babesia yet our LLMD insisted on treating him for it, he did have the air hunger and light night sweats.
He has been treated with Mefloquine ( Larium ) and is on Artemisinin, he has never taken the mepron that I hear so much about yet he is now symtom free from the Babesia.
Anyway I will be thinking of you and hoping you finally find some relief from your suffering.
Stay strong.
Posts: 448 | From minnesota | Registered: Feb 2010
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BoxerMom
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posted
Lymebytes and Map1131 - Yes, WPI is the group that performed the research on CFS patients. I remember the 67% and 95% findings. And VIP is the lab.
I don't see anything on the site about the rodent connection, but my husband is a biologist and as soon as the news about XMRV came out, he knew what it was.
I also didn't see anything about treatment, other than the possibility of clinical trials. Are anti-retroviral drugs approved to treat XMRV? I'm guessing not yet.
Lymebytes - it's interesting to me that you had improvement, then a huge setback, after Artemisinin. My husband has always tested negative for Babesia, but chose to treat when he hit a plateau in Lyme treatment. He developed symptoms that were new to him, mostly nausea and a sense of being off-balance. He also has nerve pain, but not nearly as severe as what you describe.
He chose to treat Babs based on his Fry blood smear, which he felt resembled some of the smears in the Dr. S Babesia ebook. He has just started Mepron, Malarone and Allinia. Lots of sweating. Leg weakness. Nausea. No more dizziness.
Here's a monkey for your wrench: Artemisinin treats parasites other than Babesia. Here's a bit from Wikipedia (not the best source, but a place to start):
Serendipitous discovery was made in China while searching for novel anthelmintics for schistosomiasis. Artemisinin was effective against schistosomes, the human blood flukes, which are the second most prevalent parasitic infections, after malaria. Artemisinin and its derivatives are all potent anthelmintics.[13] They are later found to possess a broad spectrum of activity against a wide range of trematodes including Schistosoma japonicum, S. mansoni, S. haematobium, Clonorchis sinensis, Fasciola hepatica and Opisthorchis viverrini. Clinical trials are also successfully conducted in Africa among patients with schistosomiasis.[14] A randomized, double-blind placebo-controlled trial also revealed the efficacy against schistosome infection in Cote d'Ivoire[15] and China.[16]
Maybe parasite testing in your future?
Do not give up. I think you can recover your health. I would go for Babesia and parasites before XMRV, especially if there is no approved treatment yet. I really think you have an infection that hasn't been found that is preventing successful Lyme treatment.
BoxerMom
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posted
I wanted to add one more thing: Artemisinin is an excellent addition to Babesia/parasite treatment, but because of its rapid clearance from the bloodstream, it is not often a cure on its own. You need sustained blood levels to kill off a high pathogen load. Possible explanation for your Art improvement followed by crash?
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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map1131
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posted
Dekarator48, thanks. I remember I was wearing rubber gloves. But in them days I wouldn't of thought twice about inhaling toxins.
Things came on slowly after that major clean up (that I remember). Spring '99, the attack and a dozen bites that I thought were chiggers, later realized what a nymph tick was.
So began the illness from he!!
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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Bugg
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posted
Hi there-
I' don't mean to be a "simpleton" about my response but are you sure you're not suffering from either magnesium deficiency or glutathione deficiency?
I'm not sure what you're doing to keep up your magnesium levels or what you're doing to keep up your glutathione levels ( whey protein or NAC)...
It's just that your cognitive symptoms remind me a lot of someone who's suffering from magnesium deficiency.
Don't forget, many antibiotics deplete magnesium from the body....
lymebytes
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Member # 11830
posted
Bugg, I take magnesium in fairly large doses every day. Glutathione ...not sure.
About the mouse discussion. I have been exposed to mice invading our garage and their droppings all the time. Right before I got sick I remember cleaning up a mouses mess. But I was also into animal rescue, who knows?
We have another one now that I can't catch in any trap. I actually love all animals even mice, but dear God I want this one out of my garage and cannot get the darn thing..tried everything. I am "exposed" once again to mouse droppings in the garage. Great.
ukcarry
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posted
Lymebytes, I wasn't on antibiotics for anything like as long as you, but didn't notice any improvement, just increasing intolerance of some of them.
Mepron and Zithro for 5 months didn't help me either.
I really don't think I believe that everyone gets better on one particular treatment [including abx], irrespective of time on it, although obviously the choice and combinations of abx will make a difference.
By the way, Stephen Buhner believes that, is Artimisin is going to work for someone, it will normally do so onthe first [one month] course, although some people appear to like pulsing it at high doses.
It probably is worth asking your LLMD to treat you for coinfections and have a longterm plan for other, non-abx, approaches if that doesn't help.
posted
Oh my gosh,reading about Hantavirus and mouse droppings is making me really nervous!
Just last week I discovered that a mouse(or rat) had taken over my garden shed for the winter.
Droppings and pee all over my countertop and previous year's garden plans, etc.
I thought nothing of picking stuff up to clean it off.
I also swept like a mad woman and there was dust flying all over the place.
Worse yet, my son was hanging around off and on as I was doing this.
Worried now.
Posts: 423 | From Upstate NY | Registered: May 2009
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lymeladyinNY
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Treating with mepron/zith/art made me feel alive again. I did not improve much and had many extremes while I was with an LLMD who did not address babesia (for 4 long years!).
My new LLMD is aggressively treating babs and it's made a huge, huge difference for me.
I'm still not out of the woods, but there are far more quality days now than I ever had before.
Unfortunately, if I go off treatment for a week - boom - the babs symptoms return with a vengeance. My doctor says sometimes babs just becomes a part of you and it's about impossible to get rid of it in some people. He thinks I may be one of those types of patients.
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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CD57
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posted
Suggest adding nattokinase and lumbrokinase to break up biofilms. This is HUGE.
As I recall you have not experimented too much with long term babs treatment or many different kinds of abx that may help you -- Rifampin, etc. (Not knocking you, just my recollect from our conversations). This may be why you have not progressed as you would like. Babs is a gatekeeper infection.
Also as Six and a few others said testing SUCKS and I can't believe that Dr S is still going by Igenex results.
What does GMA say?
Posts: 3528 | From US | Registered: Apr 2007
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CD57
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posted
Another suggestion -- why not consider sending your blood as a research sample to the NC State Vet Lab for bartonella spp? You have to be off abx for 2-4 weeks though. They have apparently identified new strains?
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