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04/05/2011 09:33 AM

Confused Lyme/Bartonella Treatment Regimen. Help!

tiredreadytodie
Posts: 17
New Member

Guys I am studying like crazy in massive pain with CNS problems. I have to start taking drugs...but I am confused.

I don't see how you can try to eliminate these two at the same time as rifampin limits the other drugs you can take.

I assume I go after Bart/BLO first?

I definitely have Bart/BLO not sure about Lyme (edit maybe HBO? what's that all about. My cat was the most likely vector for me).

Symptoms:

- CNS problems (weak subluxing joints, random twitches, numbness in hands/feet when waking. Especially ring and pink fingers)

- low red blood cells

- bouts of rage

- sore souls and outside of calfs

- always bilateral pain

- muscle knots (called "coconuts" by the Massage girls)

- stiff neck

- headaches base of skull

- bloated guts/bells palsey of the gut (really sucks) etc.

Anyone else get inner ear pains? (edit)Also, ear lymphoma (The ear lobe gets a painful cyst inside)? Just got my pediatric records back in the states and the original infection in 1979 was infected TMs, conjunctivitis and mucus! That ear lobe thing has come back on and off many times!

Can the connective tissue/hypermobility problems in the joints just be from this Bart thing or is that lyme as well?

Anyways, I'm back in Asia from my trip to US and I don't have a Dr. so I have to do this my self. So please help with duration and dosage of drugs.

FYI, 37 yrs old and have had this hell for 30 years. 6ft and only 145lbs due to this whole CNS bells palsey of the gut ordeal and massive food intolerances.

I was going to do 1) Doxycycline 100 mg 6 times per day. Maybe start at 400mg and work up to 600mg after a week?

2) Rifampin...please recommend dosage.

How long do I do this for, 1 year?

I can buy fasigyn and flagyl but don't know if you should take with rifampin it is contraindicated? Are these good cyst busters or is plaquinel the best?

What else should I take with those 2 drugs?

I did DNA of stool/urine and also have 4 times the normal level of yeast (anti yeast protocol I guess was not working!) and the dreaded taxonomy unknown (probably mold but who knows).

I think I saw someone went to that Bartonella Dr. in Maryland. What is that guys Bart protocol? Seems to be the best.

Also, since my guts don't work well, absorption, reflux etc...isn't it better to do IV's in my case since the CNS infection is effecting digestion capabilities? Also I guess oral minocycline is better than doxy in my case?

I can probably get someone to do this and it is not expensive...but I REALLY HAVE TO KNOW WHAT TO TELL THEM. How long, what amount, etc.

Sorry for the incoherence...I'm a mess. Look forward to the responses. I'm ready to start ASAP.

...also been taking fluconozole for a week but I guess I have to stop that with Rifampin. An HIV Dr. said you can take together but have to adjust dosage????

Also acquired Herpes (the basic kind, forget if 1 or 2) at age 30. I saw someone was also taking valtrex on their regimin. Do I need to take that? I never get outbreaks as I don't eat high arginine foods so I don't really think this is a problem...but who knows...I guess they all combine or something.

Post edited by: tiredreadytodie, at: 04/08/2011 09:40 PM

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04/05/2011 09:44 AM
TaraT
TaraT  
Posts: 4164
VIP Member

most lyme docs will give doxy to be taken twice a day at 100 mgs each. You should take it until your symptoms have been GONE for atleast 2 months in a row.

There are also some naturals you can do. Samento and banderol has been shown in scientific study to be more effective than doxycycline alone for lyme and bart at the same time.

There is also a product called A-bart that some of our members are using with success...This is supposed to target bart and BLO with precision.

Be careful not to hit it too hard all at once or you can actually hurt yourself with the toxins from die off...herxing can KILL you if its severe...

You must have a good detox plan on hand like drinking lots of water with natural lemon...hot baths and antioxidants...

Take supplements like milk thistle to help the liver detox as the liver catches those toxins when the lyme and bart die off...

I hope this helps a little. You can google those products.. There are other protocols that you can find online like Cowden protocol etc..

Im sure someone here on this forum can help you with info. if they have used those natural protocols..

Weŕe here for you....


04/05/2011 10:11 AM
tiredreadytodie
Posts: 17
New Member

Thanks. From what I read though you have to get over 500mg of Doxy to get the CNS infections and also rifampin works well too I guess. Hell, I'm almost dead right now because I cant eat so not to worried about herxing Wink

I saved my life with chinese medicine, diet and naturals 7 years ago...but its definitely not working now. Got the milk thistle already? How much do you take?


04/05/2011 10:20 AM
TaraT
TaraT  
Posts: 4164
VIP Member

milk thistle is great stuff...but it does interact with some meds..so read up on it. THere is an article here on this site that someone posted that you might be able to find.

The last bottle I bought is 175mgs each and I take three... I started out taking 1000 mgs a day...and I washed out a TON of liver flukes and biliary stones...I DIDNT EVEN KNOW I HAD

I only knew that my liver was very swollen and painful.. THen I was able to take those samples to my doc and get treated...

But yes that is some GOOD stuff....Switching up meds sometimes gets the immune system going again.

The cns blood brain barrier is hard to penetrate..but we have to do it to get better....Knowledge is power.

Keep on posting..Iĺl be following your progress...May good health be yours one day really soon dear friend!


04/05/2011 11:06 AM
fabajenna

Hey there-

Sorry you are having so many problems..

I can't give you any advice on the antibiotics, I don't take any, but I can tell you what will help with other things..

C-Bioflavanoids are great for the Herpes..600 mg daily..

Black walnut and pau d' arco are good for parasites..

Dandelion and as Tara said, milk thistle, are good for the liver while taking your meds/supplements.

Fish oil, Inosatol, and B vitamins will help you with the CNS symptoms..

Be careful treating yourself please..it would be best if you did find a llmd to work with..

Until then, we are here to offer you any support and give our non-professional advice as we're not doctors..but we definitely care.

Welcome to our family! Smile

peace


04/05/2011 11:41 AM
waxby
waxbyPosts: 4811
VIP Member

~~~Hello tired,hello TT,

~~~200mg a day doxy is bacteriostatic,limits/slows it's growth.400mg a day is bacteriocidal,kills it.Minimum of 400mg@day is generally accepted.

~~~Start with doxy and continue until it loses effectiveness.Then switch to mino which is about 4-5xs more effective and penetrable.However if doxy is effective then use it first so you have something to swich up to as lyme is a long hard battle and requires alternating abx as different abx lose effectiveness.

~~~I'm taking azithromycin for bart with mino and IM rocephin and HBOT and Meyers' IV.

I'm not supposed to say what my doses are but if you research you will find generally accepted/effective doses.

~~~My Dr does not think I am strong enough to start Rifampin yet.

~~~Lyme cannot be treated alone.It is a complex disease.It knocks your whole body/mind/spirit out of sight.You need to reballance your whole being.

~~~It IS important to realize that each of our needs,and symptoms,are unique and require our careful and discerning,educated,well read,attention.

~~~And there is no magic cure or magic DR. or magic clinic.And there are a lot of "snake oils" and "snake oil salesmen" out there so be cautious!

~~~Some find relief or remission from conventional/pharmeceuticals alone or naturals/alternatives such as herbs etc alone or a combination of any.

~~~We each have our own combination lock/code/puzzle/conundrum/mystery to figure out.

~~~Here is another of the main issues with Lyme Dis-ease...

~~~If you do not see a Lyme Literate Dr(LLDr),and your tests APPEAR negative,(or positive) they may treat you for whatever symptoms that your symptomology SEEMS to fit.

~~~And in most cases,if you are or are not being treated for the actual culprit,Lyme Disease,the phantom treatments for mocking symptoms will do almost nothing or nothing at all or even cause more problems,and even damage,such as being treated for MS,which Lyme mocks, with steroids etc that will only intensify the Lyme invasion and wreak additional havoc inside of you and on your life.

~~~Some have even been prescribed surgery,by a non-LLDr for a Lyme mocking "phantom" problem and the surgery,in most cases,failed.

~~~Lyme dis-ease can mock 300 dis-eases and exhibit hundreds of symptoms!

~~~However it remains important to carefully rule out other possible problems.

~~~But,let a LLDr do this to save you many middle steps.

~~~If you are working with,WORKING WITH(as in not blindly following) a Dr,hopefully a LLDr,Lyme Literate Dr,OR only with yourself as your healer if you so choose for your own reasons,pay careful attention to your reactions to each potential remedy.

~~~If the reactions are too intense,and you are monitoring and comparing them to possible alergic response,and having carefully ruled out adverse alergic response,as many reactions are the "herx", try trimming down dosages to 1/2 or 1/4,even as much as 1/8 the dosage in some cases,to find your personal,more tollerable,not overly agressive,therapeutic dosage,and "ramp-up" slowly and carefully.

`````````````````````````````````````````

~~~There is a general consensus to get a superior diet in order.

~~~That is,no junk.Every one with any sense whatsoever knows what that is.This means no sugary sodas or even diet ones or any carbonated dead beverages.Pure junk! No processed sugar either.No empty calories!

~~~Only nutritiously dense foods in a wide variety of the rainbow such as fresh sprouts,purple and green cabbage and mixed greens salads,mixed berries,etc.

~~~Mostly if not all vegetarian.Mostly if not all raw-fresh unheated fruits and vegetables are raw.Little to no dairy.Cut out gluten if you happen to be gluten intolerant as many Lyme Patients are.

~~~Eat whole grains and brown and wild rice blends,quinoa,amaranth,buckwheat,etc.Raw nuts and seeds(raw,so as not to destroy living enzymes and essential fatty acids) such as walnuts,almonds,pumpkin and sunflower seeds.Beans.

~~~Cooled down to warm(under 110 degrees) with some almond milk and a couple of ice cubes etc(not hot,so as not to destroy living enzymes in raw honey and raw choc if added.)You should be able to hold your finger in it and just feel the warmth,not hot...Green tea,red(rooibos)tea etc,almond milk,etc,raw honey,raw cocoa powder.Yum!

~~~You could vigorously stir into the warm mix a Tablespoonful or two of some organic chia seed and drink it through a straw,unless you want a chia pet mustache!You could also vigorously stir in some brown rice protein powder(from "NutriBiotic"Wink and brewers yeast(from "Lewis Labs"-no this is not the yeast that contributes to yeast-growth problems,and is very nutricious and a tasty brand.) And also some raw maca powder.I make a mixture in equal amounts of brown rice protein powder,raw maca powder,and brewers yeast and use a couple of tablespoons of this mixture in my breakfast tea.

~~~Plenty of water,some with fresh lemon.

~~~Go to a healthfood store and get a sprouting kit and make your own mixed sprouts at home in your kitchen.

~~~Try 2 Tablspoons brocolli,2T funugreek 10T(5oz) mung sprouting seeds in a half gallon sprouting jar.In three to five days,depending on the temperature,Winter or Summer,and poof,nutriciously dense food.

~~~They'll keep for a week in the fridge in airtight container.Leave uncovered overnight in fridge the first night to chill and breath out initial condensate and then cover and leave covered.Don't rinse on last day to keep on dry side to keep longer in fridge.Start a new batch some days before they run out to keep a constant supply for sandwiches,salads,etc.Add it to a big mixed greens salad.

~~~Omega 3 fatty acids and fiber rich seeds such as chia(whole or ground) and freshly ground flax-freshly ground flax as the omegas become unstable after some time after being ground, and flax is undigestable whole.Unheated so as not to destroy vital omega fatty acids and living enzymes.

~~~I use 2 tablespoonsful of whole organic flax seed and grind it fresh in a coffee grinder each time I use it.I stir this vigorously into 16 ounces,or more,of tepid water 30 minutes before some meals and before bed.I continue to drink more water in between meals away from food for better digestion and elimination.Drinking liquids with meals only dilutes your food not allowing it to digest more properly.

~~~Drinking this flax/water mixture gives it a jump ahead of meals in order to capture more bile and transport it out of the body, so it is not recycled back into your body,as is what happens to the bile, thus ushering the bile's excess cholesterol and toxic load out of the body.Your body will readily produce more fresh unpolluted bile.

~~~Flax(as well as chia) also contains essential omega 3s and 6s in a healthy proportion of 3 times more 3s than 6s.Most diets contain way too many 6s than 3s.Corn oil has 46 x more 6s than 3s,very bad.Olive oil has a ratio of 3-6s to 13-3s,very good.We tend to get way more 6s than 3s,not good. Your body will convert these essential fatty acids into necessary DHA and EPA.(See Wikepedia omega 3 fatty acid.)

~~~Organic every thing as much as possible.

~~~No harmful habbits such as smoking etc, or alcohol,which is very bad for many Lyme patients.

~~~Just as an example,out of hundreds of potential remedies,presently I'm doing MMS,for eleven months now,and in alternating days,frequencies,amounts, and combinations,

~~~teasel,samento,venus fly trap,banderol,

~~~smilax,japanese knotweed/resveratrol,andrographis,"Buhner's Herbs from his book "Healing Lyme"

~~~Dandelion and parsley extracts,mangosteen extract,olive leaf extract,grapefruit seed extract,bromelain,systemic enzymes,nattokinase,Graviola,Sangre de Drago,Jatoba(these three are South American rainforest herbs)

~~~vits,mins,supps,baking soda,superior diet.And for about a year now every 2nd,3rd,or 4th day,week,or month of minocycline.

~~~However,for now,(formerly) I am only doing the MMS and at one to three drops one to three times a day,even skipping a day or more as I am very ill and for many years, and I think I am doing too much too soon for my level of infection.

~~~And now(presently) doing HBOT,Hyperbaric Oxygen Treatment,IM Rocephin,Minocycline,Azithromycin,MMS,Myers' Cocktail IV,Medical/pharmeceutical grade supps,vits.nono/coloidal silver.

~~~Your symptoms will change,come and go,see-saw,roller coaster,scare you,tickle you,nauseate you,turn you shapes,colors,and sizes,make you laugh,make you cry.Hold tight.This is some Amusement Park!

~~~This forum is your refuge.We "get" you. USE IT!

~~~And remember,"this is a marathon and not a sprint." Be the turtle,not the hare.Moving too quickly could be potentially harmful.

~~~Chronic,persistent Lyme Dis-ease can take a very long time to diminish towards remission.It must be approached carefully,systematically,persistently,patiently...

~~~And...Never give up!

```````~~~in my straight jacket~~~out on a limb~~~lookin like a cocoon~~~hangin by a thread~~~waitin for a butterfly~~~under the moon~~~Lovey-Dovey,Mitchell~~~


04/05/2011 12:27 PM
TaraT
TaraT  
Posts: 4164
VIP Member

Thank you for posting this waxby. This is such great info! We really do need eachother..

This round table is valuable.

Love you!


04/05/2011 12:49 PM
ten1988
ten1988  
Posts: 745
Member

Rifampin 300MG first week, then upped to 600 MG after first week also combined with a macrolide such as azithromycin (500MG) will treat bartonella thats what im doing. Even 300MG of rifampin should be okay if used for a good duration of time but it has to be combined with another drug, best choice would be the azithromycin.

Also could try adding the herb Houttuynia from nutramedix as its very effective against resistant strains of Bartonella. Im doing this protocol and feeling quite a bit better, my bart symptoms are way down after about 3 weeks.

If you add in the Houttuynia, start at a low dose for 6 days such as 10 drops, then 1 day off. Then jump your dose up a little for 6 more days 1 day off then keep doing that until you feel you have reached the max dosage and stay on that but once you reach that dont take any days off just stay on max dose for a couple months at least. My max dosage is about 60 drops 1x per day.


04/05/2011 01:45 PM
wlkthlne
wlkthlne  
Posts: 1844
Senior Member

Hey Tired...Many here have answered you very well..I have found this to help me greatly..and it's a heavy hitter for what your topic says..Lyme and Bart..

Doxy and Rif combo....PM me for abx dose

After a few months...and still have some symptoms..

then...A-bart..

then....HH....

catsclaw..when you must go off abx becuse of your liver check every month says cool off a bit....

liver check is a must on abx...a must..

Hope you can find a LLMD in Asia???

Detox improtant along with diet! NO SUGAR!

This has worked great for me..but everyone is so different...

Can you hook up with someone..even if not a LLMD????

You need to be very careful when you self-treat..

I am so lucky(and I know it) to have a good Doctor..

you take care..get well,

wlk--


04/05/2011 03:13 PM
neska
 
Posts: 2089
Senior Member

i will be on levaquin starting tomorrow for four weeks. i hope that will get me started to feeling better with this bartonella.
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