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Posted by seekhelp (Member # 15067) on :
 
I'm really starting to question all my Lyme/Babesia diagnosis and wondering if the meds really have positive impact or this is just random symptoms popping up that would anyway regardless of what med, if any, I take.

I just feel fatigued beyond belief many days, especially for certain hours ina day. EVERY day I wake up, it's a chore to feel awake and start the day. It doesn't matter if I go to bed @ 10 PM, 12 AM, 2 AM. All is the same and I usually need to sleep until 8:30 - 9:00 AM. Mu quality of life and lack of endurance is a joke.

I've been on Mepron/Zithromax now for 14 days (2 tsp / 1,000 mg daily). I was off this for 14 days beforehand due to elevated liver enzyme). Prior to that, I was on it for 7-10 more days so this makes it 20 days or so on Babesia treatment.

I have high IgG titers for WA-1, not Microti. CD-57 has ranged between 30 at lowest to 71 at highest. Now, my latest reading is 42. It went down 29 points from 3 months ago.

I feel like I'm chasing my own shadow. This invisible enemy called TBDs. Yeah, my Igenex WB in Feb-09 showed: 23-25+++, 31+, 34+, 41 IND, 58+ and the IgG showed 23-25 IND, 31 IND, 34 IND, 41++, 45+, 58+, 83-93+. Babesia WA-1 titer is 1:1,024 through LabCorp.

I've treated since Aug-08 and see no end in sight. I've dumped tons of money to LLMDs, integrative doctors, and other non-traditional practicioners. It makes me ill thinking about it.

Maybe this is just Fibro or CFS and I'm a damn fool believing all I read. There's always one sure thing. Overdo something and I feel horrid for days afterwards. WHy bother really?

I don't think this stuff is beatable honestly. My EBV titers are always high. ASO titers high. Mildly below normal IgG Subclass 1 Ab levels.

Shouldn't I feel SOMETHING positive on Babesia treatment AND consistent improvement if in fact the Dx was ever right to begin with?
 

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Posted by seekhelp (Member # 15067) on :
 
Also, my latest testing showed terrible tesosterone numbers. Normal total T is 280-800. Mine was 240. Free T should've been 8.7-25.1. Mine was 7.2. Sometimes I wonder if this is the real cause of my low energy moreso than this Lyme/Babesia chase. Lots of people are running miles and miles like JamesNYC even with Babesia so it can't be that bad.
 

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Posted by Keebler (Member # 12673) on :
 
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You've treated about 16 months now. And, yes, it's a very rough ride that no one should have to go through.

Remember the park ranger in the documentary "Under Our Skin"?

He only saw real improvement AFTER he completed his third year on treatment. Today, he is still doing very well.

It can be a long road but to settle into accepting "just CFS or fibromyalgia" can give you a death sentence basically as those are usually caused by chronic stealth infections. Unless the infections are addressed and reconciled, a lifetime of this would be in store rather than a year or two more.

No treatment makes anyone feel better until the infection(s) decrease significantly.

Liver support, too, no matter how good can only do so much to protect both from toxic infections and the meds. Much fatigue is due to the stress and damage on the liver. That take time to get better.

You might check to see if you have the best liver support plan in place. You might also reassess your entire nutritional supplement plan.

ADRENAL Support may be just the ticket to help support you through treatment.

And, you might consider another overall approach to treatment, say a strong allicin protocol or rife but to give up and accept a dx of "just CFS or fibro" could bring you a bagful of shattered dreams.

This really can get better. You might chance plans but don't accept the the trash can diagnoses that most doctors would want you to so that you'd be miserable and grasping for drugs that would only mildly help symptoms for the rest of your life.

There are various ways to beat infection. Ignoring it brings harsh consequences. Rethinking your plan can be good - what about attention to biofilms/ cyst forms / etc.

The coinfections really seem to make the difference, too. Be sure not to underestimate their power and stick with taking them down.

If one way is not working, try another. Just don't give up.
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Posted by sixgoofykids (Member # 11141) on :
 
It's most likely the worn out adrenals that make it hard to wake up in the morning. There's not a whole lot you can do because the illness drains the adrenals. Waking up refreshed in the morning was one of the last things to come back for me (also GI problems hung around a while).

I was severely ill and got well. It CAN be done. This IS beatable. I KNEW I would beat it from the beginning, not that I didn't have doubts and denial going through treatment, because I did.

Keep fighting. Keep reading and learning. Go with treatments that resonate with you. I found the ones I thought would do the most did the most. It was like my body let me know what I needed by my hunches of what would work.
 

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Posted by street129 (Member # 23472) on :
 
Im Taking T3,from a compound pharmacy,
milk thistle, and adernal support for my LIVER....

but im still feeling like how seekhelp is feeling,

i haven't seen a llmd yet tho.

I don't know if my symtoms are from the doxy, or what, but im basically bedridden at this point.
 

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Posted by TF (Member # 14183) on :
 
A male friend of mine was diagnosed with lyme, babs, and bart. The babs and lyme were treated first. Eventually, he got rid of babs.

He had no quality of life with the babs. He could barely walk, suffered air hunger, etc. Very, very similar to the way you described your condition.

Now that the babs is gone, he pretty much has a normal life. He is having difficulty getting rid of his bart and is still treating lyme. But, he is back doing things like spear fishing and other sports. Basically, he can do whatever he wants now.

So, one person's case of babs can be mild while another person's case is totally debilitating. That's the message I want to give you.

Also, I would say don't add together your two episodes of treating babs. Your first episode was very short and so probably could not do anything significant against your germ load. So, just consider that you have been treating babs for 2 weeks. Anticipate that you won't feel better for a few months.

I believe it would be very rare for a person to feel improvement after just 2 weeks of babs treatment.

Just tell yourself to stay the course. Take a long view.
 

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Posted by catskillmamala (Member # 12536) on :
 
I did mepron for 5 months and my daughter did it for 22 months. Babs is hard to eradicate, but we were able to knock it back.

And yes I felt yucky the whole time and doubted whether my babs fish test even meant anything.

Don't forget that mepron causes depression. You can search for "mepron blues" in the forums to see how much has been posted on this topic. Don't get discouraged.

I did a total of 2 years of abx, supplements and rife and I'm now MUCH much better.
 

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Posted by seekhelp (Member # 15067) on :
 
Thanks for the reply. Yes, Keebler I sure do remember the park ranger. However, I remember he also saw the most famous LLMD ever and was treated 10x more aggressively than anyone I know that sees the doc(s) I do. I hold little hope my results will ever compare to his just for that reason alone. Didn't he have IV Abx administered through a chest port for YEARS?

I'm very much looking into adrenal issues as we speak and am waiting on results of a saliva hormone panel testing 4x throughout the day. My morning blood cortisol was always normal, but my 24 hr urine cortisol was always low normal range. I am quite sure my adrenals have been blasted due to this ordeal. Even if I discover abnormalities, finding ccrrect Tx will be very hard.

Sadly, it's a race against the clock with money going fast. I just shelled out $250 for a month supply of Mepron today. I'm praying this Dx is correct and what I'm doing is useful. This cost was only for a 2 tsp daily dose too and eventually I'm guessing i need 3-4 tsp daily based on my weight.

Lastly, the most i'll get is 3 months of Babs treatment through my ID doc. I guess it's better than my LLMD who believed it was taken care of in 10-20 days.

THanks TF for the reassurement. I hope I follow your friend's path and see improvement. I hate the quality of my life now and yawning 100s of times a day and sometimes an hour. I use a BiPAP machine too and it's like a kick in the face to see no help with it after a year and a half.

All day each day my eyes/nose pour liquid, I'm yawning, my stomach muscles feel so tight when moving, back/neck muscles tight making breathing difficult. I feel like a 100 lb dumbbell never leaves me.

If I have to do this 22 months Catskillmala, consider me toast. Affording 22 months of this yellow goo is absurd at my cost. Furthermore, ever finding a doc who believes it needs to be treated for 22 months is near impossible. I see one of the most respected LLMDs in the country from testimonials here and he seems to believe Babesia is a pretty easy bug based on the Tx protocols Rxed. 22 months of WHAT made you better? How do you really know as you did rife too? With multiple modalties, who knows what really did the magic?

I also vaguely remember a few here saying if you don't see marked improvement in 2 weeks, most likely you're going nowhere with the drug.
 

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Posted by coltman (Member # 21272) on :
 
Sorry to hear that about your trouble

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consider me toast. Affording 22 months of this yellow goo is absurd at my cost. Furthermore, ever finding a doc who believes it needs to be treated for 22 months is near impossible

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I feel like I'm chasing my own shadow. This invisible enemy called TBDs. Yeah, my Igenex WB in Feb-09 showed: 23-25+++, 31+, 34+, 41 IND, 58+ and the IgG showed 23-25 IND, 31 IND, 34 IND, 41++, 45+, 58+, 83-93+. Babesia WA-1 titer is 1:1,024 through LabCorp.

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Also, my latest testing showed terrible tesosterone numbers. Normal total T is 280-800. Mine was 240.

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My T is junk too ( 260). I had my T up in summer but I didnt feel improvement - everything was still crap , I only really felt better after course of doxy in august. I will try to get my T back now and see if it helps now
 

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Posted by seekhelp (Member # 15067) on :
 
I begged my ID doc for Biaxin as I did better on this - MUCH more than Zithromax. He refused and said it's not intracellular and useless against Babesia if paired with Mepron. No amount of arguing would help.

I can never take Ketek. I took it for 2 days and my eyesight deteriorated so bad I couldn't read anything. Scary. it's a listed side effect of the med.

Coltman, that's very disappointing to hear improving your T numbers didn't yield health improvements. Are your adrenal tests in normal range?

I can't possibly get an ID doc to Rx 4 tsp of Mepron. My LLMD wasn't into high dosing one bit either. We're really forced to pay the big bucks to the NY LLMD shotgunners if that's what's needed to see improvement.

I'll probably add ART in a week or two to see if that has impact. My ID doc knows NOTHING about ART, Enula, or other Babeia herbals. One thing that has resonated with me is a poster stating ART alone is enough to beat Babesia WA-1 per Dr. J (CT). He's the most respected doc in the world so that's making me wonder if this is enough.
 

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Posted by coltman (Member # 21272) on :
 

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Coltman, that's very disappointing to hear improving your T numbers didn't yield health improvements. Are your adrenal tests in normal range?

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I can't possibly get an ID doc to Rx 4 tsp of Mepron. My LLMD wasn't into high dosing one bit either. We're really forced to pay the big bucks to the NY LLMD shotgunners if that's what's needed to see improvement.

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One thing that has resonated with me is a poster stating ART alone is enough to beat Babesia WA-1 per Dr. J (CT). He's the most respected doc in the world so that's making me wonder if this is enough.

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Artemisinin? Yeah that looks like good stuff. Check out if you can combine it with current treatment

But again I think doing all other things are important too ( such as sauna - dont overdo it , but its kick *** detox and overall helper)
 

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Posted by Hopeful2010 (Member # 22958) on :
 
I can relate seekhelp. I'm not giving up but I do understand what you are feeling. All of this medicine has taken a tole on my body and my body is telling me that I may need to take a break. I haven't even treated Babesia yet and my body is fried from all of this medicine.

I don't want to sound like a pessimist but the ranger in the film was treated shortly after he was bitten. He actually kept the tick and was able to take pictures of the rash. I think that is why he had a better chance at beating it.
 

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Posted by CherylSue (Member # 13077) on :
 
Seekhelp,

I know you and I went to the same LLMD at one point. That doc helped me somewhat in 2 years. However, I went to a local doc who treats lyme and viruses. She gave me Isocort for my adrenals and found I had high titers of EBV and myco pneu. going on as well. She is treating everything at one time. She doesn't believe in this one at a time business.

I am 85-90% better from 15% initially. Treating adrenals was the key for me. I have been working frull time for the past 16 months after being on disability for the two years prior.

It takes a long, long time to feel better. Sorry to say, but that's the truth. You have some good advice posted above. Print it and read it regularly.

Good luck!
 

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Posted by seekhelp (Member # 15067) on :
 
Wow CherySue, that's incredible. I'm done with the one at a time stuff. I made up my mind recently. it's a losing proposition and money I could use for better purposes. I've read your type of story one too many times. I hope your improved health continues indefinitely.

So many docs have fear of treating things and it's a detriment to the patient long-term. One year or five years to get better is just fine with some docs, but the patient is left in destitude and their life savings gone. It saddens me.

Yeah Hopeful2010, that park ranger had the scenario we all hope ... history of rash, knowing what's wrong, high possibility of exposure due to career, endemic area. It's a little easier to tell yourself you're Dx is correct when it's as obvious as a 800 lb gorilla in a room.
 

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Posted by Lemon-Lyme (Member # 19229) on :
 
For adrenal and testosterone issues, have you seen an endocrinologist? If you consider those separate issues, a decent endo should treat.

I had lowish testosterone at one point, still in normal range, but lower than optimal. And somehow it increased the next time I tested, (only change I added was grapeseed extract). So it's worth getting testosterone retested, especially early in the morning.

I sympathize with lack of progress. I've been treating for less time (about 8 months or so) and have some tiny improvement, but basically whatever improvement I've had occurred during the first 2-3 months of treatment, and I've leveled off since then. But I recently tested positive for Bart, which hasn't been treated yet, so that may be the cause.

According to my ILADS doc, he expects to see a certain level of improvement for Lyme after 6-8 months or so of antibiotics, and if not, then he revisits other causes. But in your case, it would seemingly be Babesia causing your woes. Hopefully if you stick with your Babesia treatment things will improve.
 

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Posted by seekhelp (Member # 15067) on :
 
Lemon-Lyme, endos are useless for the most part, unless you have adrenal failure. THey don't believe in the oh-so popular adrenal fatigue Dx here. Low T is considered a joke in most younger males as well and they cite the risks of prostate cancer repeatedly and refuse to treat.

I too hope Babesia is the missing link. Sometimes, I'm not sure if I needed to stay on meds that caused head pressure, anxiety, etc. since they may have been killing bugs and I wound have come out the other side better. My LLMDs always took the road of less resistance and said just stop. There were not risk takers in any way. This of course can be good too, but it's a tough call.

Sadly, both my LLMDs should've seen Babesia from DAY ONE. Only through my research and insistence could I get one to test for WA-1. THey knew I visited the West Coast at times and got very ill there. it kind of irks me to drop thousands and have to discover that maybe 16+ months of treatment were in vain. I had many signs, but it never ever was treated expeditiously and never was any seriousness. I respect my ID doc for taking the initiative to attack it. I hear over and over here you can't beat Lyme w/o beating Babesia. Geez.
 

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Posted by pab (Member # 904) on :
 
Seek,

What is the longest, continuous time period you have been on any individual antibiotic?
 

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Posted by seekhelp (Member # 15067) on :
 
4-5 months. Only combo therapy ever was Biaxin/Ceftin. For sure, the most used drug was mono Zithromax, then Biaxin. Some Ceftin, Tiny bit of Doxy, tad of Clindamycin, Quinine, Omnicef, Plaquenil, and Rifampin anfd Bactrim (for a whole 3 days each). None of the second list was used for more than 20 days.

Low dose Malarone (1 tablet a day) for a month. My first LLMD believed Babesia was killed with three days of Malarone, but I pursuaded the doc to treat for a month.

I've been on something since Aug-08 with the exception of one 30-day break, 20 day break and 14 day break.
 

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Posted by Lymeorsomething (Member # 16359) on :
 
Bands 31 and 34 usually point toward longstanding lyme from what I've read. You may want to try a more lyme centered regimen. I plan to do this too after I take an abx break and try a T3 only protocol.

I don't like mixing too many protocols anymore...too many variables...impossible to know what is doing what.
 

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Posted by Lemon-Lyme (Member # 19229) on :
 
Sort of odd the choices of antibiotics there. Well... moreso the fact you didn't spend very long on most of them and there are so many. Why so short a time and why so many switches between them?

My doc doesn't like the multiple protocol type of thing, as Lymeorsomething mentioned just now. He likes one thing at a time, to see if it works or not... and if not, then he moves onto something else. But he usually recommends at least 3-4 months on any single antibiotic to see if it does anything.

And from what I've read, and what my doc told me, Zithro is sort of a lousy drug against Lyme -- at least it is as a mono treatment. I think my doc called it a 3rd tier drug against Lyme.

And has Bart been ruled out (no heel pain/leg symptoms)?
 

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Posted by seekhelp (Member # 15067) on :
 
Few to any Bart symptoms. Well, I guess anyone can find a few if you look hard enough. Every single Bart test has been negative every time. My LLMD changes drugs every single month automatically. It's a set process I think.

My first LLMD really thought oral Zithromax was the best drug ever for Lyme. Maybe for some, but NOT for me.

I have some issues tolerating drugs. Maybe the infection load was/is high, but I think I have some detox issues not addressed adequately. it's not proven or tested for. My docs said since it can't be changed, it's not worth looking at. I know others here have vastly different thoughts.
 

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Posted by Lymeorsomething (Member # 16359) on :
 
Seek, I agree with you though that low T is probably not the cause of your issues but merely a symptom. One study I've read indicated that men with low T rarely have symptoms.

I had my T at a perfect ratio with E2 over the summer and it did next to nothing as far as improvement.

However, I feel thyroid function is key. You need a stable body temp for good enzyme function.
 

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Posted by lymednva (Member # 9098) on :
 
Seek, Babs WA-1 is very difficult to treat. I was on Mepron and biaxin for a year and then relapsed when I stopped treating it. Now I'm back on it again, with zith for several months and now back to biaxin.

One of the symptoms of Babs is extreme fatigue, supposedly more so than Lyme. It sounds to me like you really need to consider a different LLMD who will treat with more than one med at a time. Mono therapy usually isn't enough, especially for those of us who are chronic.
 

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Posted by btmb03 (Member # 18394) on :
 
Seek - I do think Art would be a great adjunct therapy. Just PM me for more info if you wish.
 

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Posted by coltman (Member # 21272) on :
 

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part, unless you have adrenal failure. THey don't believe in the oh-so popular adrenal fatigue Dx here. Low T is considered a joke in most younger males as well and they cite the risks of prostate cancer repeatedly and refuse to treat.

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Seeing Metallic Blue's recent post about some having the compassion of a tack hammer also makes me weary. He's the most thorough patient on Planet Earth. I can't imagine anyone here being able to summarize even 50% of what he writes for docs.

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