bartonella treatment - depressing

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nefferdun
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Date Joined Feb 2008
Total Posts : 900
   Posted 10/14/2009 8:41 PM (GMT -6)   
Got tendonitis when I took levaquin. When I tried rifampin it caused dizziness the first time and brought back the pain from the tendonitis the second time. I have been taking herbs including large amounts off HH-2. I seem to have reached the peak of recovery, not getting anywhere any more and starting to slide backwards. Is there another drug I could try to help boost the effects of the herbs? One that does not have so many side effects?
The herbs are very expensive and I cannot afford to take them forever especially if they don't even work. This is what I am now taking: It's crazy
10 HH2 for bartonella
1000 mg grapefruit seed extract for cyst form of lyme
1500 TOA free cat's claw for lyme
4800 mg andrographis for bartonella and lyme
300 mg alpha lipoic acid - antioxidant
1000 mg acetyl L Carnitine - energy
100 mg CoQ10 - circulation and brain
200 mg nattokinase and lactoferrin - for bio film
Quercitin, vitamin C and bromelian for inflammation
100 mg hyaluronic acid for dry eyes
B100 and 1000 mg magnesium
special formula of minerals etc for healing
now and then add Cumanda

Just swallowing that much %$#@# is enough to make you sick. And it doesn't even kill it because it keeps coming back. Depressing.
I think part of my depression with this is the cost is not even tax deductable - non of the medical bills are and that is where most of our spare money is going. I don't know why these herbs should be so expensive - or any of the treatment, especially since none of it is effective.

CajunGrl
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Date Joined Mar 2009
Total Posts : 4717
   Posted 10/14/2009 9:28 PM (GMT -6)   
nefferdun,

That's terrible. I'm so sorry the herbs are not working right. I wish I knew of something else that could help you. I'm hoping someone comes along soon to give you some advice. I too am about to start Levaquin for Bart and am kinda scared.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


nefferdun
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Date Joined Feb 2008
Total Posts : 900
   Posted 10/15/2009 6:36 AM (GMT -6)   
Thanks CajunGrl, I woke up this morning so dizzy I could not walk. I don't know what to think. There are times I feel almost well and have hope I am recovering and then I plunge. This stuff really does seem to be incurable. As I just added andrographis to my arsenal, I quit it to see if I am having a reaction to it. The first time I took andrographis I felt like I had a really bad urinary tract infection. I even went to the doctor. Bartonella causes this urge to go but I also had pain from it. Perhaps it is killing off more than I can handle. Hard to say.

I would be very cautious on levaquin. One doctor will not give it to his patients because he says they all get tendonitis. It can quickly do permanent damage. It is also very expensive. If you get any muscle pain, not just joint pain, stop immediately. And don't exercise as you can rupture a tendon very suddenly. You may also experience emotional herxing from it which is pretty powerful. But it does kill the bart, that is for sure. I felt much better in just a couple of weeks until the tendonitis happened. I never had physical herxing symptoms except I had insomnia on levaquin. The best thing for that is Zhang's HerbSom. It works as well as a chemical drug.
Have you tried Rifampin? I wish I could tolerate it. After levaquin I could not tolerate any abx - at least none that I tried. Every time I called the LLMD to tell him what was happening it cost between 1 and 2 hundred dollars for his telephone consultation not including the new drug, so I just gave up on him helping me.
I read there is a LLMD in Spokane and maybe I will see her.

It is weird that most books focus on borellia with only small paragraphs devoted to the co-infections.
It is hard to find information about bartonella treatment.

Nicky D
Regular Member


Date Joined Jun 2009
Total Posts : 361
   Posted 10/15/2009 1:12 PM (GMT -6)   
Hi nefferdun,

I would have replied earlier, but I know noting about most of the supplements you are on, and the list kind of intimidated me.

I originally took Bactrim and Biaxin (for both Lyme and bartonella), but I am now taking Bactrim and Rifampin for bartonella. I just started this recently, so I just feel worse right now...but I should know in a month if it's helping. I am also on grapefruit seed extract- and holy cow does that stuff ever work for me!

I'm on Ceftin for Lyme, and an anti-fungal partially for lyme, partially for yeast-prevention. I take a bunch of B vitamin complexes (they're actually marketed for CFS patients) and an anti-oxidant (for Fibro patients) and quercetin. I am also on a natural anti-depressant (5-HTP), and thyroid medication.

I agree with you that talking too many pills can be tough! I could be taking a whole lot more stuff (my naturopath could literally list 100's of things that could help me), but if I have too many pills to take, I get stressed out just trying to remember them all, or I just forget to take them. I take about 29 pills a day....and I swear, sometimes I subconsciously make myself forget about the ones I don't like (like the GSE)!

My LLMD would have included Levaquin in my combo, except I already have major tendon problems, so he is avoiding it. If you are active, I think you should be very careful. When I first started looking for reasons for my symptoms, one of the first things I got asked was if I'd taken Levaquin or Ciprofloxen.

Anyway, I see that you say you can't tolerate antibiotics. Have you considered looking for a lyme-literate naturopath? There are a bunch out there, and they can give you a treatment plan that doesn't involved antibiotics. If you told them you were on a budget, they will probably be able to ensure you get the best stuff for your money- I know that is what the naturopath I used to see did.

Bartonella isn't as common a co-infection as babesia, so maybe that's why there isn't as much info on it?

Nicky

Willowrose
Veteran Member


Date Joined Oct 2009
Total Posts : 699
   Posted 10/15/2009 2:15 PM (GMT -6)   
Nicky - I am interested the treatment you are taking for bartonella. I have two strains of bartonella and also babesia along with lyme. Since I'm new to all of this my LLMD is treating the babesia first, then we'll go after the bartonella. I'm glad to know about what seems to work and what doesn't. I'm wondering if it is okay to take grapefruit seed extract with mepron, azithromycin, and artemisinin, or if I should wait until we're treating the bartonella to start it. Any ideas?

Rose
I have Lyme; it doesn't have me.


Nicky D
Regular Member


Date Joined Jun 2009
Total Posts : 361
   Posted 10/15/2009 5:33 PM (GMT -6)   
Hi Rose,

1st- I don't know what strain of bartonella I have. I know their are two, but I didn't do any testing, so I could have either or both.

The grapefruit seed extract is actually more for lyme (in cyst form) than bartonella. I know it isn't good to take it with Doxycycline. I have taken it with Biaxin, Bactrim, Ceftin and Rifampin, so I know that is ok. I also know you can take it with artemisinin. I don't know about Meprom or Azithromycin- but your LLMD should. grapefuit seed extract is a commonly-used treatment for the cyst-form of Lyme, so most LLMD's know about it.

Also- while you could start GSE now, because it treats Lyme and not bartonella, I would still ask your Dr. You don't want to give yourself too much to handle at once. The antibiotic equivalent of grapefruit seed extract is usually flagyl, if you've heard of it.

nefferdun
Veteran Member


Date Joined Feb 2008
Total Posts : 900
   Posted 10/15/2009 5:44 PM (GMT -6)   
I am starting to feel less dizzy so I hope it was the andrographis that I was reacting to. I read online that dizziness is a rare side effect in some people. It was pretty bad and my stomach also hurt. Fingers crossed I won't wake up with it tomorrow. Someone who came over may have exposed me to H1H1 as they were recovering from it. I would rather face that than bartonella taking over again.

Nicky, I think I am taking 36 pills a day. I have 4 daily pill containers that I divide them into. That way I don't forget anything. I have been doing this since I quit the abx in March. After reading Schaller's book on bartonella I got the impression the only way you can knock this out with herbs is to take a huge amount of them.
I have rifampin, biaxen and plaqenil but can't take them.

I guess I am more emotional than usual as I just found out one of my cat's has a fatal disease.

Willowrose
Veteran Member


Date Joined Oct 2009
Total Posts : 699
   Posted 10/15/2009 10:40 PM (GMT -6)   
Nicky D.

Thank you for explaining that. I will ask my LLMD. It's good to know that there are things I can do to help myself fight this along with pharmaceutical drugs.

Rose
I have Lyme; it doesn't have me.


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 10/15/2009 11:45 PM (GMT -6)   
nefferdun,

Thanks for the heads up on Levaquin. The bad thing is that I already have muscle pain so I'm not sure I would know if it was hurting me. I've taken Levaquin alot in the past. The last time I took it, I could barely move or extend my arm all the way. I'm not sure if that was a herx or not but I do know that I felt so much worse on it. It's never done that to me before. I am pretty anxious to get back on knowing what I will go through. I was supposed to already have started it. Blah! lol.

Btw, I'm glad you're feeling better.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


pcpc
Regular Member


Date Joined Feb 2009
Total Posts : 214
   Posted 10/16/2009 6:19 AM (GMT -6)   
Hey Nefferdum, sorry you are still struggling. I made good progress with using IV Claforan. Did 3-4 months of it and become functional.

I am now doing Dr J (SC) protocol eith Clindamycin & Zithro IV pulsed 3 days a week ... Also pulsing Artem, Mepron, and Bactrim.. It is so great to be off antibiotics most days and ever 2 weeks off for 10 days.

I am mostly symptom free. Lamictal solved my mood swings and Lyrica helps sleep and shoulder pain.

Like you shoulder pain persists and I just had a repeat MRI.

You may want to consider moving to IV
Grew up on Cape Cod with Lyme... (TB aged 12 so did 2 yrs antibiotics as a kid). Weak immune system lifelong-self diagnosed Lyme 2003. Treated successfully with Cowden herbs until rebit 2007. Babs, Bart and Lyme treatments- currently using IV Clindamycin/Azithromycin and oral Mepron, Bactrim and Flagy- pulsed therapy.


nefferdun
Veteran Member


Date Joined Feb 2008
Total Posts : 900
   Posted 10/16/2009 7:57 AM (GMT -6)   
Thanks pcpc, I do not think there is any doctor here that can give me the IV. I had to travel over 500 miles to see an LLMD last time. I read there is one closer but she is homeopathic.

When I was first diagnosed I had insomnia, urinary irritation, shin pain, muscle twitching, headache, hot flashes, depression, confusion and no motivation for anything. Within weeks of taking levaquin I was setting goals again but I could only use levaquin 5 weeks. I stayed level on the herbs. I continued to do things. I had no shin pain, urinary problems, hot flashes, headache. I was just touchy, more irritable than usual. I also continue to have marble like nodules that hurt under my skin, lumps along my shin bone, swelling around my ankles and other skin indications of bart that never went away. But my skin discoloring - pea size brown spots and hypopigmentation - improved a lot. It seemed like the treatment was very slowly working and I thought I just needed to up the dose. As the HH was very expensive I couldn't afford to increase the dose until the HH-2 came out. That was when the symptoms came back and I decided I was herxing so cut back. For two months the symptoms lingered without resolution. So I am afraid that HH cannot cure bartonella like Zhang and Schaller say it can. I think it can just arrest it for a while and then it loses it's effectiveness.
I ran out of HH twice and while waiting for the order to come I took large amounts of Cumanda, which Schaller and Cowden say cures bartonella. The last time is when my symptoms started back up again.
If it was/is herxing it seems there would be some resolution and improvement. I will probably up the dose to the highest level recommended and see what happens before I give up on it. When I am sure it is not working I need to see someone else, start over.

Recently I read about the bio films with bartonella and started protocol for that which is why I am now up to 36 pills a day. I am not as sick as many people but I am not well or even getting there. It is like holding on to a life preserver still out at sea.

CajunGrl, if you are still following this, I would not take the levaquin as it seems to worsen muscle pain and injury. Maybe try the human formula of equine leg magic I am taking. I can sleep much better, not so much aching at night, knock on wood.

Post Edited (nefferdun) : 10/16/2009 8:01:28 AM (GMT-6)

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