Phsinvent- ?s for you

I was wondering if you liked roxithromycin a lot better than biaxin and how you came up with 600mg a day?

Also, you mentioned in another post you had horrible insomnia at one point, but didn't say how you dealt with it.

It would be a tough decision if i had to choose between Roxithromycin and Clarithromycin(biaxin). They both served well for me. It mainly depends on what you are trying to target. Roxithromycin combined with Bactrim for increased MIC values, did great in keeping the babesia sweating and muscle symptoms at bay. Roxy/Bactrim is also a good combo for lyme. Either one of them alone has a slight effect on lyme but even greater when combined. Outside of being an antibiotic, roxithromycin has some good antimalarial properties. So combined with other antimalarials such as artmenisin, mepron or bactrim for babesia is a good idea. I felt it did better as an add on to mepron versus zithromax or biaxin. Zithromax oral proved to be the most worthless abx i've taken. Not to say that the zithromax IV form doesn't have good results though.  

I know a few others who are using roxithromycin and biaxin. I think they alternate the two every other week.

What do these flare ups consist of? How long have you been doing this combo of plaquenil, biaxin, doxy? Any minor night sweats, depression or muscle fatigue/pain? If so, you may be missing babesia. If not, plaquenil does take a few months to get full benefit.

I had horrible insomnia for the first 2 months on biaxin. At the time i thought i was a side effect but now when i look back it was clearly a herx and takes time to subside. Similar herxes are felt with rifampin. I think the only way around it for me without narcotics or herbal sleep remedies was to nap during the day, anytime i was tired.

Biaxin/Amoxicillin is another great lyme combo to try.  

Minocycline may do some good, you never know until you try it. It does indeed have a dizziness side effect. I found that side effect never resolved so i eventually dropped it. I still choose doxy over minocycline. Doxy did well but only when combined with one or two other good abx such as the macrolides.

The cephalosporins are a different and more complicated story.  

I also wanted to ask you: when you ordered your drugs (I know which websites you chose) did you watch for specific drug companies or did it matter who manufactured them? I noticed some just say various????? Also did you just use your credit card? I have read some people had fraudulent charges on their cards a few months later.

Your right I don't agree about the main struggle being babs. But I do value your opinion and your previous experience. Thank you so much for your time. I hope in the future you will be available for more questions. I am so glad you are doing SO well. The reason why I don't believe it's babs is from the previous post:

SamplerSharon



Posted 4/11/2008 4:08 PM (GMT -7) Quote This Post
Hi folks, I thought I'd post this here on the Forum. An LLMD gave me this list a few months ago.

Hope it helps some of you.

SamplerS/FuzzySlippers

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BARTONELLOSIS

Common symptoms of bartonellosis include:

___Fatigue (often with agitation, unlike Lyme disease, which is more exhaustion)

___Low grade fevers, especially morning and/or late afternoon, often associated with feelings of "coming down with the flu or a virus"

___Sweats, often morning or late afternoon (sometimes at night) - often described as "thick" or "sticky" in nature

___Headaches, especially frontal (often confused with sinus) or on top of head

___Eye symptoms including episodes of blurred vision, red eyes, dry eyes

___Ringing in the ears (tinnitus) and sometimes hearing problems (decreased or even increased sensitivity - so-called hyperacusis)

___Sore throats (recurring)

___Swollen glands, especially neck and under arms

___Anxiety and worry attacks; others perceive as "very anxious"

___Episodes of confusion and disorientation that are usually transient (and very scary); often can be seizure-like in nature

___Poor sleep (especially difficulty falling asleep); poor sleep quality

___Joint pain and stiffness (often both Left and Right sides as opposed to Lyme which is often on one side only with pain and stiffness that changes locations)

___Muscle pains especially the calves; may be twitching and cramping also

___Foot pain, more in the morning involving the heels or soles of the feet (sometimes misdiagnosed as plantar fasciitis)

___Nerve irritation symptoms which can be described as burning, vibrating, numb, shooting, etc.

___Tremors and/or muscle twitching

___Heart palpitations and strange chest pains

___Episodes of breathlessness

___Strange rashes recurring on the body often, red stretch marks, and peculiar tender lumps and nodules along the sides of the legs or arms, spider veins

___Gastrointestinal symptoms, abdominal pain and acid reflux

___Shin bone pain and tenderness

Bartonella is a bacterium that causes illness, the most commonly known of which is a disease called "Cat Scratch Fever." Thousands of known cases of Bartonella occur in the U.S. each Year, with the vast majority of known cases due to bites from fleas that infest cats or infected dogs (may also occur directly from bites and scratches from infected dogs or cats). Bartonella can also be transmitted by ticks that transmit Lyme Disease. In fact, in a study published recently, deer ticks from New Jersey had a higher prevalence of Bartonella organisms than of Lyme organisms.

It is unclear whether the organism that we see transmitted along with Lyme disease is actually a Bartonella species (such as B. henselae or B. quintana) or is "Bartonella-Like Organism" (BLO) that is yet to be fully identified. While BLO has features similar to organisms in the Bartonella family, it also has features slimiar to the Mycoplasma and the Francisella (causes tularemia) families.

_________________


BABESIOSIS

As with other co-infections, there is a lot of overlap of symptoms between Lyme disease and Babesiosis. An accumulation of the following signs and symptoms probably warrant testing and/or treatment of Babesiosis:

___Chills

___Fatigue and often excessive sleepiness

___High fever at onset of illness

___Night sweats that are often drenching and profuse

___Severe muscle pains, especially the large muscles of the legs (quads, buttocks, etc.)

___Neurological symptoms often described as "dizzy, tipsy, and spaciness," similar to a sensation of "floating" or "walking off the top of a mountain onto a cloud"

___Depression

___Episodes of breathlessness, "air hunger", and/or cough

___Decreased appetite and/or nausea

___Spleen and/or liver enlargement

___Abnormal labs (low white blood count, low platelet counts, mild elevation of liver enzymes, and elevated sed rate)

___Headaches (migraine-like, persistent, and especially involving the back of the head and upper neck areas)

___Joint pain (more common with Lyme and Bartonella)

___anxiety/panic (more common with Bartonella)

___Lymph gland swelling (more common with Bartonella and Lyme)


I've had all but about 2 of the bart symptoms and only about 4 of the babs only symptoms. I've had the last 3 listed under babs it states they are more common with lyme and bart.

Thanks so much

Thank you for more thoughts on this.

I never took mepron with anything but zithro. And did not get the sweats when starting this. I've been on biaxin/plaquenil and doxy for only two months. And have seen huge improvements but still have these flares. Which I am only guessing but have to do with vasculitis or something where the untouched bart starts to reproduce. Or the VEGF that the crap releases and then I have swelling because of the widened blood vessels.

Oh yeah I want to ask opinions of this- other than HH what would knock those bio films which I think are a big culprit.

I've skimmed Dr. Schaller's new bart book and he states that he took on patients who were on full Levaquin or Cipro and he saw no decrease in bart in them. He goes to say later on that zith or biaxin and augmentin XR have helped.

Thanks in advance for any input.

Seeingstars:

Not to interject on the subject...but I would listen to Phinsvent on how to treat the Babesia.  If you dont get the Babesia knocked out, you will not get better.  I think what he is trying to say is that you need to hit it from all directions.  I would try the Roxi, Bactrim and Artemesia. 

There is a new report of a new Bartonella species - http://www.sciencedaily.com/releases/2009/01/090106145006.htm

As we have so many new emerging infections, especially Bartonella spp., we need to treat what we can...with what we can.  First of all Lyme can probably be cured with Long term antibiotics (1 Year +).  Secondly, many people on this site and others are getting rid Babesia, but you have to hit it from all angles like Phinsvent mentions.  Last, Bartonella is not getting cured and because of the nature of the infection who knows when.  Many infectious researchers are finding this creature and dont know what to do.  Some Vets are able to culture it, but why doesnt respond to the typical antibiotics?  Many Vets, Vet assistants and hundreds of thousands of people are suffering from all of these infections...but Bartonella spp.  is the one no one get a hold of.  We know how to treat Lyme, Babesia is getting more difficult, because of the new species...but Clongen Labs is able to get a correct diagnosis and is trying to find what drugs work against the new strains, but the Bartonella spp. is tough.  Everyone is trying to use Gentamicin and a lot of new drugs, but people relapse.  It is crazy that people are starting to use the aminoglycosides.  There are so many side effects and because the drug is only effective against the spp. when it comes out of the cell...it makes this drug useless. 

I would listen to Phinsvent and use his protocol.  He has helped me with my protocol and he has tried every drug out there and knows what works.

Snake and Needshelp-

I am very glad you both offered your ideas. I think this website has helped so many people that anything we discuss can be used by anyone. All posters: Please feel free to add anything. I specifically titled it for phsinvent because I was interested in his knowledge on roxy and hoped it would catch his attention when he visited the site.

needshelp- I hate to hear that you are having a setback. How long have you been on Biaxin and doxy? Do you think it could just be a big herx? I do believe this combo (I have added plaquenil just a month ago) is doing something good. I was on it for a month and 1/2 when I had a huge flair up and thought I was getting worse. Now that I am thru it I can tell it's working at this time. Are you sure it's thrush? I thought I had a horrible yeast infection in my throat and my doc looked and said he saw nothing. My mouth felt hairy and I had a horrible sore throat. Liquid nystatin did nothing for it. It got way better when I was put on IV doxy and IV zith. which one might say helps combat bart to an extent. Bart will leave you with sore throat and I've read other people had weird sensations in their mouths. But since you are on a drug combo I think works on bart maybe it is just thrush. I just like to offer other ideas and keep an open mind to an extent.

needshelp-

what lab are you trusting with a diagnosis?

needshelp-

I'd guess your llmd is using labcorp or quest. I know quest only tests for 2 of the many bart strands. And babs is the same problem. So if you have one of those strands you'd probably test positive. Probability is not on your side tho. I think the most accurate tests are the ones that look at your blood under slides.

Plus if you were taking doxy and biaxin I don't know how that might affect the test. I think titers should still be there tho. But like I said, if it is an IgM IgG test they only are capable of detecting a few strands.

Also, (just my conspiracy theory) I know bart shuts down your immune system, so if you've had it for awhile you might not show titers anyway.