posted
I need some perspective from everyone. What do you think about my situation and does anyone out there know of a lyme patient that's been able to stay extremely active?
I'm not trying to brag or anything, but to put it into context, when I say active I mean like last Saturday I ran a 1/2 marathon and then biked 20 miles on Sunday. My totals for May were 82 miles of running and 127 of biking. I also swam a little while on vacation. Granted, this is about half of what I was doing before I got sick, but I've stopped comparing. I only mention it so that you know where I'm coming from.
I'm asking because my LLMD seems stumped with the disconnect between my symptoms and my ability to exercise. He's thrown several types of oral abx at me -- Doxy, Mino, Zith, Plaq, Mepron, Rif, Cynd -- and I have moved up notch or two in overall wellness, but they've done nothing for my CNS symptoms. If anything they are worse than when I started treatment just over a year ago.
The main issues still being: Horrible brain fog, increased tingling in hands/feet, strange muscle tightness on one side, anxiety, depression, floaters, stuffy ears/hearing, occasional twitching.
The things that have improved: 1: Sleep -- My daily symptom charts say it's averaging around a 2 on a scale of 1-10 (10 being up all night w/o sleep). I'm now getting consecutive nights of uninterrupted sleep. 2: Fatigue -- It's still just over a 3 on the 1-10 scale (10 being completely wrecked and in bed all day), but very manageable. At it's worse it's like I pulled an all-nighter. I just feel sleepy.
That's about it.
My LLMD says that the only time he's seen cases like mine is when Bart was the culprit. He says that Babs and Lyme usually kick you in the butt if you try to do too much. He suspects Bart because I rarely experience any payback from exercise. After I ran the 1/2 marathon I took a nap for 1 1/2 hours and felt pretty slow, but not much slower than I would have after a race of that distance before getting sick. The rest of the week was fine too.
I got my Bart results back from Fry the other week with a positive picture of... something (you can see it here on my blog). This is what's led my LLMD to jump on the Bart wagon. I'm currently on Rif, Mino, Zith, Mepron and Diflucan for this.
What do you folks think? I'm completely fed up with the whole process and starting to lose confidence in my LLMD. He's one of the best and knows his stuff, but I can see it in his face that he's reaching for a solution.
One last thing... I know some of you may think that I should cut back on the exercise -- and perhaps I should tone it down a notch. However, every doctor I've talked to (with a clue about Lyme) says that it's cool as long as I don't crash afterwards or have any joint inflammation or pain. Which I don't... nor have I ever in the whole span of my illness. I'm very careful about not overtaxing my body and as a coach and long time runner know how to look out for the signs of overtraining.
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I'm not expert, but if anything, Bart sounds possible based on my readings. Your ability to exercise like that w/o payback is mind boggling to me, but good for you.
If you don't pay for it, I'd do it too. Nothing wrong with keeping yourself in tip top physical shape. I don't see any Levaquin/Cipro/HH in your past Tx plan. I know that's a scary proposition given your career though.
The fact you've been able to do so much physically and Igenix Dxed Bb via WB makes me wonder again....
Sometimes LLMDs may just be wrong. Don't discount this. Many on this board believe their word is the end all in a Dx. I don't.
I'll let others chime in on the meaning of the blood smear. From Fry?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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quote:Originally posted by seekhelp: The fact you've been able to do so much physically and Igenix Dxed Bb via WB makes me wonder again....
Seek... what do you mean by that? What does it make you wonder about?
It's all mind boggling to me too. Of the 20 or so people that I've personally talked to, the only one who's been able to be this active is a cyclist. We have similar stories, but I think he had a more straightforward case (if there is such a thing).
I think your exercise may be keeping your physical symptoms at bay...I would keep it up!
I am pretty much like you with regard to exercise...it doesn't seem to bother me, and I actually feel much better when I do it. My aches and pains literally vanish. I have probably had lyme/coinfections for 20 years but have been an athlete my entire life. One LLMD told me that's why I've kept it at bay.
My worst symptoms came after my two pregnancies when I hadn't been able to exercise for a long time. They gradually got better over time as I gained my strength back. I definitely believe I have bart based on the symptoms I had at that time.
I still have a few symptoms however (mostly occasional headache), and am trying to decide what to do with regard to treatment. I am very busy trying to cure my 3 children and husband and am a bit frightened to stir things up until I can get everyone else under control!
Just curious, who is your LLMD? My pm box isn't working but you can e-mail me at [email protected].
I think you probably either haven't treated long enough with the drugs you are on or haven't taken the right drug. I know from seeing my children improve, the head stuff takes much longer than the rest. You have made many improvements...you may just have to be patient. That's what I have to tell myself with this horrible disease.
linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
We've had a similar experience with my teenage son. He is fairly high-functioning, not like you, but can keep up with most daily activities without crashing. In fact, he is in denial about even being sick.
He has anxiety, depression, tremors, poor memory, and focus, really struggles with schoolwork. He gets very frustrated with not being able to follow through.
His sleep patterns are a lot like yours... awful until he started meds, rifampin and bactrim, for bartonella a few weeks ago, as well as hydroxizine and melatonin for sleep.
He sleeps better now, usually about 12 hours per night, not great sleep but more of it.
He has a double-positive lyme test (Igenix), cd-57 of 45, got into a bunch of seed ticks at camp a few years ago, and got three EM rashes on one ankle and one on the other. Pediatrician put him on 2 weeks doxy.
I have also been diagnosed pos. and gave birth to him after getting sick.
Our llmd, also highly-respected, seems puzzled, says he doesn't seem 'sick enough' to have lyme. His symptoms are also cognitive in nature. So he is leaning more to bartonella infection.
I can't get past all the tests and his being born with it.
Llmd hasn't ruled out lyme and says it could be a mild case. My son doesn't 'fit the mold', so we are all wondering.
Even though his sleep has improved some, his cognitive symptoms have not yet. I still think he has lyme and bartonella, we'll see what the llmd says at our appt. on Monday.
I can see why you want to keep up your exercise, especially if you can without feeling bad. I remember those days fondly!
We will continue with our llmd, until we run out of options. He knows a heck of a lot more than we do. So we'll put our faith in him for now.
We hope you find the answers you are looking for, we know how you feel. So many unanswered questions with this disease. Take care and keep us posted.
Linky
Posts: 2607 | From Hooterville | Registered: Apr 2009
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You might want to drop a few bucks on the Fry Labs smear. Your description sounds a lot like mine, and the Fry smear showed me with some "moderate hemobartonella / mycoplasma." (to go with the Bb and Babesia) Since then it has been called "toxiplasmosis-like" or whatever on the board. Knowing is half the battle, right. Well it has not been that helpful to me, but I continue to push on and I see you are too.
Seek, no need to wonder. We all have different presentations. I have positive labs for all the above. I did a 13-hour mountain bike race solo last month with a CD57 of 20. While I am slower than I used to be, I can still move. For me, the depression slows me down more than pain. I find motivation to be the challenge.
The brain is where I am suffering the most. I cannot see more than 6 minutes into the future. I am a urban planner, so work is close to impossible.
Chronic, I have considered just not discussing the extent to whch I exercise with the LLMD. I do not feel like I received a fair evaluation from a couple docs, good ones, because I included exercise on the chart.
FOr example I heard, "you can't have babesia; you would be too sick to do what you do."
-------------------- enjoy the day.
-jmb Posts: 208 | From Maryland | Registered: Dec 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I simply meant I always wonder about Igenix's WB because Lyme is usually so cripplng, but people's functionality ranges all over the board. Your presence of symptoms is confirming something is very wrong though, but it makes you wonder if Bb is the issue. I'm no doctor.
As the other poster said and I believe too, your physical conditioning may be what is stopping Bb from disbling you.
I can't prove it, but my gut feel is I got Bb in 1996 after EBV and never knew. I lost 100+ lbs then and was a big workout person. NOTHING like you at all, but I worked out 6 days a week, lots of cardio, strength training, etc. I eventually beat out the symptoms (more suppressed 75%+ of them) for 10 years.
In late '07, all hell broke loose. I'm completely out of shape now, different person. I still rode by bike 15 miles or so 4-5x a week for years when I couldn't walk anymore due to weak legs.
This is a mysterious disease, but all would be so much easier if some smart person would just invent a test to actually prove Bb in tissue, blood, etc. It's absurd it's undetectable after 30 yrs of research.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
jmb... How are you, man? I'm totally ignorant on the types of tests that I just had done at Fry, but wasn't it a smear? Check it here -- http://tinyurl.com/onjkkz. Do you mean I should get something else? It says "suggestive of hemobartonella or mycoplasma" which is the same as yours, I assume.
I just stumbled onto the toxoplasmosis thing recently after trying to read about BLO. Still trying to wrap my head around it.
Your symptoms sound the same as mine. I pop a Welbutrin daily now. Helps.
seekhelp... my Igenex, while not off the charts, was pretty positive. See my bands here -- http://tinyurl.com/kwxolr (scroll down)
Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Hey CT,
While I can't help you, I just wanted to say I admire you and your blog. I used to be a runner before Lyme, and have run in little increments, did a 5K in 2002 when I was feeling better.
I plan to exercise again when my body will begin tolerating it more.
I've read that Babesia is one that causes a lot of fatigue symptoms. My brother has Lyme and he started exercising more after he got sick and no one could figure it out. He hasn't had fatigue symptoms. He has a lot of vision problems though and some weakness/tingling.
Also, there are different strains of Lyme and they do different things in the body. Like someone else said, maybe the exercise is helping. I am sure you have a pretty good diet too!
Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
quote: The main issues still being: Horrible brain fog, increased tingling in hands/feet, strange muscle tightness on one side, anxiety, depression, floaters, stuffy ears/hearing, occasional twitching.
Low magnesium may be the cause of some of these symptoms. (twitching, muscle tightness, anxiety, depression)
Fish oil would reduce inflammation and help some of the symptoms. (brain fog, anxiety, depression, ears)
The tingling in hands and feet may be the beginning of neuropathy. Supplement with a good B complex sublingual vitamin.
Beta glucans would help increase the activity of the white cells to phage bacteria. Cat's claw would do this too.
Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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posted
Carol, I didn't list all my supplements, but in response to your comments I currently take Magnesium - 500mg x 2 (in a multivitamin). Should I do more?
I'm off and on with the fish oil, but didn't notice any change when on it.
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
CT, Do you realize we have almost the exact same Western Blot? Pretty freaky huh? But our symptoms are very different. Mine I would say if it even matters is slightly more positive than yours.
This disease is so strange how we all are affected differently.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
From my family's experience, I believe your LLMD is on the right track by treating Lyme and Bartonella. But it is unusual that you can be so physically active with Tick-Borne Diseases.
My grandson, who is 17, got both diseases at age 7 but was not diagnosed until 12. He has almost finished treatment for Lyme and Bartonella by the best Lyme Pediatrician.
Symptoms were mainly neurological and big changes in vision. Through it all, he has continued to play sports every semester - football, soccer, LaCross, basketball. His doctor said to let him play if he feels like it and has no problems. It raises the core body temperature and increases the oxygen in the body...both things the Lyme bacteria do not like. I'm not sure about Bart.
Lyme does not have to be so crippling. It can range from extremely mild to debilitating disease. That's one reason it's so complicated. It can be different in each person, though many of the same symptoms exist. My grandson has never looked or acted like he was sick.
In my case, Lyme has been relatively mild compared to so many other people. I've had Lyme since the late 1970s or early '80s. No diagnosis until 1992 in NJ. Also have Babesia and Bartonella diagnosed in 2001 and 2002.
Don't give up on your treatment. I've been told the CNS symptoms are the most difficult to treat because the Blood Brain Barrier tries to keep foreign substances, like antibiotics, out of the brain.
If these diseases are present, they'll get you sooner or later. Stopping treatment now will only mean treatment will be more difficult when you have to go back to it later.
It could be called a "medical marathon."
Posts: 4638 | From South Carolina | Registered: Mar 2001
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Chronic, I'm actually very active as well...exercise, f/t work, grad school....despite very difficult fatigue, floaters, twitching, and endocrine issues.
People assume you're fine when you can push like this but that is not the case. I do these things to keep my sanity but have not had a normal social life since getting sick, and this is primarily due to consistent fatigue issues (unrelieved by exercise or rest)...
I do some weights and some running regularly. I had to give up competitive tennis though for now as that is too demanding on the body.
I'm wondering if I have the same doc as you. Bart was suspected for me too. Can you pm your docs name?
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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posted
chronoc, your nice JPEG is the smear of which I spoke.The coinfections, to me, seem to be the norm not the exception. I am starting to think one means all, and that LLMDs should throw the abx sink at all patients of tick borne illness from the start of treatment.
I am doin alright but am not close to fine. I am a little bit stuck, and it looks like I will have to chase Bart too. I am not a fan of Levaq. I took it for one week, and I was a different person. I was insane. Now I wonder because I never had the elbow and rib pain before the Levaq, and then I read some wild **** on the web on the extreme side effects of the floros.
So I think I will be rotating over to riamp/plaq in a week or so. I have been considering a number of races just to keep me motivated. On the side I am takin the 2-year old up to the Wall tomorrow for the Philadelphia Classic. I keep tellin him that not all bikes are "dad's bike."
Thanks for the Wellbutrin recommendation. I hate to add another med, but what is one more at this point...
-------------------- enjoy the day.
-jmb Posts: 208 | From Maryland | Registered: Dec 2008
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posted
cHRONIC, ALSO. cONGRATs on the half. From experience I know it must have been a bitter sweet time for you. I hope you continue to focus on the sweet.
If you are like me, you tell youself slow is fine, and participation is a gift. But when it is all said and done, slow is still slow. Then I think, "if I liked slow, I would never have started to run/ride in the first place." Then I think, "focus on the sweet, focus on the sweet."
Or silly. Like can you imagine if UCI sampled our blood? The machines would explode, and the lab techs would wear space suits...
-------------------- enjoy the day.
-jmb Posts: 208 | From Maryland | Registered: Dec 2008
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tickbattler
Unregistered
posted
Like cbb said, lyme is not always crippling. And in some cases, it can be mostly psychiatric. There are so many different presentations.
I believe much of the population is walking around with it and probably has some mild symptoms that they attribute to something else.
One of my 5 year old boys who has tested positive for babs duncani, bart hensalea and lyme has always been very, very active. His worst symptoms are hyperactivity and aggressive behavior.
He has had terrible insomnia but that went away after about 5 to 6 months of treatment. Most of his physical symptoms are gone now except sunlight sensitivity and headache, which comes and goes.
He has been in treatment for a year now and we are still battling the manic and oppositional behavior. He also recently started having OCD behavior. We are still treating for babs and bart and lyme. The LLMD said that he could also have mycoplasma but the rifampin would be getting at that.
Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Chronic,
My opinion from your description? Mind you I am not a doctor, just another late stage CNS lymie
Sometimes I think that only IV for at least 4 months of something like rocephin, which has the best brain-blood barrier penetration, will reach the most CNS buggers.
You started treatment just over a year ago? That is a relatively short-time for the symptoms you describe, if using oral abx, in my experience. I have used only oral and IM abx (bicillin for over half a year), and had my best results after 2 years of treatment!
Are your oral abx at high enough a dosage? Late stage CNS lyme can require high dose oral abx (the Dr. B guidelines) or IV.
Great that you can work out and exercise that much! That does not seem inconsistent to me with late stage lyme, which is "the great imitator" and can manifest in different ways in different people.....
Posts: 2557 | From home | Registered: Aug 2006
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
CT~ We've corresponded before...but have you looked at HHV-6, EBV, enterovirus?
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
I have had Lyme most of my life and was highly functioning for years and years. There were a couple times I suffered chronic fatigue type symptoms when I was under a lot of stress, but those self-resolved in a few months .... and exercise was part of what helped .... also sunshine and eating right, which I'm sure you do.
I did end up crashing and becoming a typical lyme patient who just can't get out of bed. I kept up with as much exercise as I could handle, even if it only meant a very short walk.
So, I say keep the exercise up and see if you can come to some sort of balance with the Lyme/bart. I would treat and see if you can reduce the symptoms and at least stay on some kind of maintenance protocol. I am about to the point of maintenance myself.
Good work!
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Chronic, hang in there. Be impressed with yourself for all that you can still do. My symptoms are nearly exactly yours, with CNS symptoms dominating, but I've also had exercise recovery problems where I can't sleep after days of hard exercise (and "hard" is becoming relative!). You once suggested d-ribose - how and when do you take it?
Also, any movement on the IV front? I know you were considering and waiting on insurance.
JMB, can so relate to your statement that "if you are like me, you tell youself slow is fine, and participation is a gift. But when it is all said and done, slow is still slow." Frustrating!! Enjoy bike race day here in Philly!
Lynne
-------------------- Increasingly ill over past 10 yrs; treating since October '08. Posts: 180 | From Philadelphia, PA | Registered: Oct 2008
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
chronic, hate to say it. but youre lucky!
I cant work out at all, and I used to love it. ITs been this way for 5-6 years
Posts: 2905 | From New England | Registered: Sep 2004
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
You might want to suggest to your LLMD that he should treat you for Parasites and Worms. They play a MAJOR part in Lyme. Check out
-------------------- 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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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
I am sort of a similar presentation to yours. I can exercise and don't get wiped out with fatigue. My symptoms are mostly the same ones you describe. I chased bartonella for a year with Rif+Zith+doxy+Levaquin.
I switched LLMDs recently and he said that babesia holds the immune system hostage so without treating that you can't get the others. Also he said that all of us have all coinfections, including CPN and mycoplasma, viruses and mold, and we must treat accordinlyg. Also, most Lyme patients just plain old need IV. His program is 5-6 months IV at the get-go.
Have you treated babesia for enough time?
Posts: 3528 | From US | Registered: Apr 2007
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Also, in my situation, he told me that we could chase bart and Lyme together, which I had done for 2 years, but that if I didn't go after babesia I wouldn't really improve. He said that babesia is "wing man" to Lyme, makes it worse, upregulates it.
So maybe your symptoms are really bart, but you can't get it fully bc the other two are not subdued.
Also, have you checked your immune system function (IGM?IGG?IGA?). Those can indicate if you need stronger immune support. I am starting LDN soon.
Posts: 3528 | From US | Registered: Apr 2007
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posted
when i was working out, felt better, used that for endorphine release due to pain ...and yes my dr's thought i was odd. but when i would hurt bad, then hit the gym. hour of high impact, cardio i enjoyed and got pain under control for few hrs then able to sleep
when my neuro stuff hit me, i was blasted with it. woke up one day unable to stand up in shower, walking into walls, ,etc.
when stopped working out bc of above my condition spiraled down, fast.
IV rocphin is helping with my neruo stuff. have been on it since feb. and plan is to keep going.
tx babs for 4 mo. now starting 2nd mo. of bart tx with cipro.
mag. is HUGE for me. i take the slow-mag as Dr B recommends and does make diff. for muscle pain, spasms, twitching,etc
lyme dr gonna try IV mag, prob. getting ins. to approve it.
also- was told to use sam-e, and actyl cistine (?) at high does for neruo. does make diff.
i am off/on with fish oil, but gonna stick with on. seeing improvement and want to keep it up.
i am going to gym again- just yoga for now. baby steps!!
for you: supplements for neuro and IV abt to brain. keep moving as long as you can!!
-------------------- i am not a Dr. any info is only for education, suggestion or to think/research. please do not mis-intuprest as diagnostic or prescriptive, only trying to help. **
dx in 08:lyme, rmsf, bart, babs, and m.pneumonia. Posts: 422 | From TX | Registered: Oct 2008
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posted
I was just in a major backbending yoga class today thinking how amazing it is that there is no overdoing it for me in terms of exercise.
If I can do it, I'm okay. Sometimes I can do 20% of a class, usually it is about 50%. Today it was about 95%. If I start the classes with an inversion, like a headstand or handstand or arm balance, the rest of the class is easier.
I think it is because inversions can balance the CNS.
The CNS stuff has been/is the major symptom of mine for many, many years, progressing over the past 2 years.
I can do a full back bend, no problem, but I fall over in a simple balance pose.
So, when I'm teaching, I keep things harder, rather than easier. Makes no sense. Wish I had something to offer. My LLMD thinks we aren't tackling the Bart hard enough.
Not even sure what co-infects I have. Just did an igenex panel for my congenital son. Hope that will shed some light on it.
Keep running. I'll keep doing backbends. Maybe we will have some sort of revelation.
Posts: 564 | From Tick Hell | Registered: Oct 2008
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posted
Good luck. Would love to hear what you find out. I have been the same way as you for a long time now. Makes people think that I am fine, but all the while I am in my own personal mental hell.
I am reacting to flagyl, which makes me think that mine is lyme and not just bartonealla. I have been on rifampin and zith for 9 months. The flagyl has been the thing that has really kicked my butt and I have herxed the worst and seen the most progress.
I have only been treated with orals. Keep wondering if IV would be helpful, but my doctor won't entertain it.
I am herxing right now, but was still able to do a long hike and run twice in the middle of it.
Good luck. Let us know what you figure out.
Kathy
-------------------- Severe neurological problems. Probably sick for years. Became chronically sick in Aug 2007. Undiagnosed for another 15 months. Started treatment for lyme and bart Sept. 2008. Improving, but very slowly. Posts: 515 | From washington dc | Registered: Aug 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Try Factive, remove Zithromax, Mepron, add Plaquenil, Malarone. That'll kill the little *******s. If that doesn't work and you've never done IV, it might be worthwhile down the road. Run another Igenex test to see whether you're still showing IGM positive.
These are some ideas. Pulse the Factive. It's that or Levaquin, and I'd avoid that with the newer Quinolone (factive).
These are just suggestions. Also, confirm whether Rifampin can be done with Factive. I don't recall whether it can.
One more thing, if you just started the new routine in your signature: Mino, Rif, Zith, etc -- give that plenty of time, at least a couple months. Babesia treatment should be at least 5 months minimum.
Hopefully I didn't forget anything, and make sure to confirm contrindications. I only know Zith and Factive are a no-go.
-------------------- 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
My doc also has me going on a 5 day test run of Factive & Mino. Will see what it nets!
MB, you sound pretty confident with Factive.
Did you experience some positive results or something?
[ 06-16-2009, 10:47 AM: Message edited by: Flyinpiker ]
Posts: 101 | From Living in the Now | Registered: Mar 2009
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METALLlC BLUE
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Member # 6628
posted
Well the Factive is just the logical step unless Levaquin or Bactrim are still on the table. Factive is the least likely of the three to cause problems based on reports that I've seen. I'm only on my second 5 day cycle of Factive. In total I've done 8 days worth which isn't long enough in my opinion.
-------------------- 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.
ping
Frequent Contributor (1K+ posts)
Member # 6974
posted
quote:Originally posted by Chronic Triathlete: What do you folks think? I'm completely fed up with the whole process and starting to lose confidence in my LLMD. He's one of the best and knows his stuff, but I can see it in his face that he's reaching for a solution.
Chronic Tri, don't be upset at your LLMD. There are NO EXPERTS at treating these illnesses because it's so different, case by case. In fact, it sounds like your doc is really taxing his skills to help you stay on your feet.
The flip side of your situation is that with the kind of neuro sx's you're reporting, it might be very possible that someday soon the crash will come. If and when that happens, you want your LLMD to pull as many rabbits out of his hat as possible.
I have no idea which individual infection is wearing on you the most; it's likely a combination. Don't give up on your LLMD.
ping "We are more than containers for Lyme"
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
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I am pretty much the same as you. I get no reprocussions from excercise and I have been fairly active most of the time throughout. I also tested pos for Bart and I seem to only respond to Bart drugs. In fact I respond dramatically to levaquin, Mino and Rifampin.
I also suffer terrible floaters and eye inflammation which clears up mostly within 24 hours of levaquin or high dose rifampin + Mino.
I would never have gotten well without the Bart drugs. Its a ***** to get rid of too. I recommend trying levaquin before Factive. Factive is hardcore even for me. I will do another couple of months back on the Levaquin before using Factive again. It knocked me on my ***. Take care. Neil
-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Posts: 648 | From Ireland | Registered: Jan 2007
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Have you tried Ivermectin and albendozole? Just curious. I have no problems thinking about the
recent posts here on the subject of Filarias I just
don't know when it would be best to try it. If microfilaria are as hard to find as Bb it might be something to search? Or treat? I don't know.
-------------------- 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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Clarissa
Frequent Contributor (1K+ posts)
Member # 4715
posted
Hi there,
I know we have the same LLMD. I've been declared in remission of BB, Bart, Babs and Candida since Nov 08. I can exercise until the cows come home but I still have some depression and anxiety.
Now, in my particular situation, I'm almost positive this is situational depression because my parents' married for 45-years are going through a horrific divorce.
That being said, I still feel that my brain still has patterns of negative thinking, depression and anxiety which I am adressing with a therapist (LLMD's suggestion) with a program called Cognitive Behavioral Therapy.
How are you with detoxing? Our LLMD like Nano Tek Chitisan but I found cholestyramine to be my ace in the hole. Even now, when I'm around mold or feel toxic, I still take it even after taking super high doses of it for over a year.
Mold & Biotoxins can cause many symptoms and they should not be ignored.
Our LLMD doesn't 100% buy the concept of the biotoxin gene (which I have), however, he had no problem in believing MY belief of its benefits and gave me an RX for the CSM.
Has he hit you up for Mesosilver yet? That was interesting for me because after being declared in remission, I actually herxed on Meso (mildly). It hits ALL foreign pathogens and does a good clean up and can also be used as maintenance to avoid any crashes.
So, my 2 suggestions would be to ask our LLMD about cholestyramine and Mesosilver.
I think the exercise helps tremendously but don't be an overachiever until you get these other things at bay!
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Mine I would say if it even matters is slightly more positive than yours. 
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