Phsinvent- ?s for you

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seeingstars
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Date Joined Apr 2008
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   Posted 1/3/2009 3:24 PM (GMT -6)   
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.

seeingstars
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Date Joined Apr 2008
Total Posts : 266
   Posted 1/5/2009 10:52 AM (GMT -6)   
I am on biaxin, doxy, and plaquinil and it is working ok. I still have some major flare ups. I am going to ask my doc for a switch from doxy to mino.

I also wanted to ask how you pulsed your meds. Specifically the macrolides.

If you are willing to share.

thanks in advance

phsinvent
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Date Joined Aug 2006
Total Posts : 1155
   Posted 1/6/2009 5:08 PM (GMT -6)   

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.  


seeingstars
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Date Joined Apr 2008
Total Posts : 266
   Posted 1/6/2009 5:30 PM (GMT -6)   
At this point I am not worried about the lyme. I don't think I've got babs. I was on mepron and zithro for at least 3 months and I just kept getting worse. No improvement. I agree with you about oral zithro. That was like taking a placebo for me. I believe I am dealing with bart. I have had papules and the red pin dots after the shower.

My flare ups: I feel like VERY tiny sticks start moving around in my spine. I'll get a spine bone or two that hurts like heck. My neck up into my head feels like it is swelling up. I can feel the "sticks" start to move around on the sides of my head. I get horrible headaches and often feel like I've got the flu when the stuff flares. I am asking about roxy because I've read it crosses the blood brain barrier better and MOST of my symptoms are CNS related. I have just finished a day of my shins hurting like someone kicked them.

I have had muscle pain but that is not as present as my daily headache and head pressure and insomnia.

Night sweats- When I started the combo I'm on now (2 months now) I had night sweats off and on for about 2 weeks. I had a low grade temp off and on for about the first month of this treatment. I also had night sweats when I was on IV doxy and Iv zithro. I did Iv cipro and didn't seem to get better.

I know testing is a laugh but the infect. disease doc tested me thru quest for the top 2 bart strands -neg and the top 2 babs strands - neg. According to him- just dealing with lyme. We know that's not correct. If I go off meds I am in trouble just days afterwards.

I don't think was a very organized post but this is what I was capable at the time. Any more thoughts?

seeingstars
Regular Member


Date Joined Apr 2008
Total Posts : 266
   Posted 1/7/2009 10:54 AM (GMT -6)   
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.

phsinvent
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Date Joined Aug 2006
Total Posts : 1155
   Posted 1/7/2009 4:37 PM (GMT -6)   
I wouldn't go for the various brands. If you are purchasing Roxithromycin on edrugone then go for SM pharma. I did that stuff for about a year straight. No problems. If you decide to try bactrim. Order the Roche brand bactrim. Just email edrugone with the items you want and they can send you a paypal invoice. If you are familiar with paypal, it is the most secure way to pay. All of your financial information is kept from them. I use www.drugdelivery.ca for all other meds. I only used edrugone for thiamphenicol, roxithromycin and bactrim. And yes, roxithromycin crosses the blood brain barrier better than the other macrolides. It is not a miracle but a helpful tool in this journey.
 
You may not agree but your struggle is pointing more towards babesia. Plaquenil is a very mild antimalarial and biaxin is slightly antimalarial. This could explain why your sweats came out in the first 2 weeks on your recent combo. They are suppressing it to a degree. If playing detective and looking for babesia without tests. The 3 and 4th night rule is a good test. Most babs herxes are on the 3rd or 4th night. When you take something that targets it pretty good, you get a rather pronounced sweat on that night.
 
This is what i'd try. Roxithromycin, Bactrim, Artmenisin. Start them all at once and note what happens on the 3rd and 4th night. I'm not saying these will cure babesia. But this will be a nice indicator of what you have going on. Babesia is not always eradicated with mepron/zithromax alone. Ask many of those on this board. I've seen some do 8-12 months of the mepron/zith and no babesia eradication. I think this has some to do with different strains. Sometimes the mepron/zith combo requires the addition of bactrim and artmenisin. And sometimes babesia requires other things such as Riamet, tafenoquine, chloroquine, quinine, clindamycin, nitazoxanide, etaquine, etc.
 
Doxycycline is also a mild antimalarial too. Just how much it affects babesia, we dont' really know. There is way more than 2-3 species of babesia that most labs including igenex test for. We are talking about 15 or more that we know of.
 
Also, a very small percent experience strange red skin rashes on bactrim. I haven't known anyone to have this problem but just keep an eye out for it.  
 
Bart or a new blo type organism is another story and roxy/bactrim could keep it suppressed while you go after babesia again. For all you know, you may just be battling lyme and babesia.
 
Again, these are all just ideas i'm throwing out. You can take which ever route you want.

Post Edited (phsinvent) : 1/7/2009 3:42:12 PM (GMT-7)


seeingstars
Regular Member


Date Joined Apr 2008
Total Posts : 266
   Posted 1/7/2009 5:34 PM (GMT -6)   
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

__________________________________________


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

phsinvent
Veteran Member


Date Joined Aug 2006
Total Posts : 1155
   Posted 1/7/2009 6:49 PM (GMT -6)   

Also keep in mind. Most of those bart symptoms listed are also lyme symptoms. Your sweats are the biggest indicator. They should lead you in the right direction. And your babs treatment was wayyyy too short. I myself loved Biaxin/plaquenil/doxy for bartonella. Roxy and bactm was good for bart too. Rifampin would only give you temporary relief because you really are almost out of options. So if you think it is bart, then why would biaxin/plaquenil and doxy not get you to a symptom free state? And why wasn't the IV cipro so special? And why did doxy, mepron, plaquenil, biaixin cause an increase in night sweats followed by less sweating and daytime fever? You need to ask yourself this. I honestly think you could be missing something. Actually something is missing because you have gone after bart and lyme but kind of neglected possible babesia. Did you ever try artmenisin. I'm sure this conversation will repeat itself down the road after you try rifampin, minocycline and levaquin. I think that route may be a dead end.

One last thing. When you did mepron zithromax. You claimed that you went downhill. Well think of this theory. We all know zithromax is pretty much worthless against lyme. And mepron isn't an antibiotic. Do you think the backslide could of been lyme gaining the upper hand but you were thinking you don't have babesia. It was like two things were happening at once.   

Oh well. i'm ranting. I'll shut up

seeingstars
Regular Member


Date Joined Apr 2008
Total Posts : 266
   Posted 1/7/2009 7:17 PM (GMT -6)   
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
Regular Member


Date Joined Apr 2008
Total Posts : 266
   Posted 1/7/2009 8:24 PM (GMT -6)   
Oops- I am mistaken. I have only been on plaquenil for a month now. My doc had me add it after I was on doxy and Biaxin for a month. Sorry, you weren't given all the info. I was just getting ready to renew the plaq and realized it's only been a month.

snake1979
Regular Member


Date Joined Apr 2008
Total Posts : 282
   Posted 1/8/2009 9:57 AM (GMT -6)   
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.

needshelp
Regular Member


Date Joined Aug 2008
Total Posts : 225
   Posted 1/8/2009 10:10 AM (GMT -6)   
Mind if I join in on this discussion?  I'm on Biaxin and Doxy.  Seems like a good conbo for me with the exception of terrible thrush.  Unforutnately, I've recently had a set back.  Could this be due to co-infections?  I get tested next week. 

seeingstars
Regular Member


Date Joined Apr 2008
Total Posts : 266
   Posted 1/8/2009 11:44 AM (GMT -6)   
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
Regular Member


Date Joined Aug 2008
Total Posts : 225
   Posted 1/8/2009 5:07 PM (GMT -6)   
Seeingstars,

I've been on doxy for 4-5 months and added Biaxin two months ago. I have had terrible neck pain the last week or so along with some muscle/joint pain in my legs and arms. I also had a couple night sweats (without fever) two weeks ago and some on and off foot 'burning' pain. Not sure if I have bart or babs? Should know in 3 weeks. Does Doxy/Biaxin kill off bart?

One thing about Lyme is that it never seems to end. Every time I think I'm turning the corner I start to crash.

Gotta run....I think the bill collectors are calling me again.

seeingstars
Regular Member


Date Joined Apr 2008
Total Posts : 266
   Posted 1/8/2009 7:04 PM (GMT -6)   
needshelp-

what lab are you trusting with a diagnosis?

needshelp
Regular Member


Date Joined Aug 2008
Total Posts : 225
   Posted 1/8/2009 7:55 PM (GMT -6)   

Seeingstars,

I don't know.  My LLMD gave me a sheet (prescription) with the test he wants.  I was going to have my blood drawn at an outpatient center next Monday and have them send it out to the appropriate labs.  Are testing for the co-infections bad (i.e.  not reliable like lyme)?


seeingstars
Regular Member


Date Joined Apr 2008
Total Posts : 266
   Posted 1/9/2009 9:17 AM (GMT -6)   
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.
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