posted
In LLMD world some say above 60 is a good/normal number.
Higher numbers (in a sick patient) indicate that the issue is related to something other than Lyme (ie: Coinfections)
My LLMD personally likes so see a CD57 @ 100 before all treatment for Lyme is stopped, he said it reduces the relapse rate, in his practice.
85 is a good number, I think.
I'd focus on Coinfections, if it were me.
Best of luck!
Posts: 371 | From CT | Registered: Jun 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Yes, I've been told 200 + is where I should be. I've been treating Lyme for 6 years, but I continue to struggle quite a bit. I'm functioning at only around 35-40% almost all the time. Dr. D, my doctor here in Massachusetts, simply said I didn't need the Igenex testing, Fry or CD-57. However, I went against his advice and got all three. The Igenex IgM is lit up bright, with 9-10 bands. The IgG had 4 bands. The co-infection panel for Igenex was all negative. The Fry labs results have not come back yet.
I am 95% certain I have undiagnosed Bartonella, with potential Babesia. I have begun treating with Bactrim briefly, and noted significant worsening of symptoms on the 7th day, and then improvement on the 9th day. The 10th I was even better, but had to stop the medication as a result of sun-burn like skin, both painful to touch and red, though I'd not been in the sun.
I got the Bactrim from a friend so I could perform a subjective experiment. I had a violent Herxheimer reaction that lowered my function to 20%. I couldn't walk, I was practically unable to breath. I continued to persist through it though. I've had Herxheimer reactions and still have them when I start new medicines, but I'd never had one cause debilitating headache, fatigue, pain to this degree. I had "nerve" pain, which I almost never have with Tetracycline or any of the other "Lyme" antibiotics I use.
Any further information is helpful. Can you tell me about any of the other numbers?
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
I agree with your assertion you have a co-infection, with a high CD57 number like that.
A person who is functioning at 35/40% (from Lyme) would be expected to have a lower number (like 20-30), I would think. Yet, no test is perfect.
Will your doctor treat co-infections?
The other numbers are blood counts--WBC, Lymphocytes, Neutrophils, etc. Yours look good.
Best of luck!
Posts: 371 | From CT | Registered: Jun 2008
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METALLlC BLUE
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Member # 6628
posted
Dr. D won't treat co-infections, however, I convinced him to try something new. Since Biaxen and Plaquenil, and Zithromax and Amantadine, as well as Tetracycline, IV Vanco, Oral Penicilin, have failed to improve my health significantly, I told him we should use Rifampin and Minocycline. He was ambivalent, but I told him we should give it 6-8 months.
He said "Ok, and said that he wanted me to use the Amantadine with it." I said I'd do that.
So, I'm going to try to kill two birds with one stone. Also, if my number is so high and my numbers so normal, why was my Igenex Western Blot IgM so brightly positive but my IGG was only mild to moderate with 4 bands.
The only time my health ever improved much was in 2005 after IV Vanco, when as a result of Sepsis from the PICC, the hospital gave me IV Levaquin and Bactrim, and then I had to go home and take oral Levaquin and Bactrim for two weeks.
A short time after the use of the Bactrim and Levaquin my health "drastically" improved. I was functioning around 45-50% consistently. That doesn't sound like much, but that's extremely good for me.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
quote:Originally posted by METALLlC BLUE: Dr. D won't treat co-infections, however, I convinced him to try something new. Since Biaxen and Plaquenil, and Zithromax and Amantadine, as well as Tetracycline, IV Vanco, Oral Penicilin, have failed to improve my health significantly, I told him we should use Rifampin and Minocycline. He was ambivalent, but I told him we should give it 6-8 months.
He said "Ok, and said that he wanted me to use the Amantadine with it." I said I'd do that.
So, I'm going to try to kill two birds with one stone. Also, if my number is so high and my numbers so normal, why was my Igenex Western Blot IgM so brightly positive but my IGG was only mild to moderate with 4 bands.
The only time my health ever improved much was in 2005 after IV Vanco, when as a result of Sepsis from the PICC, the hospital gave me IV Levaquin and Bactrim, and then I had to go home and take oral Levaquin and Bactrim for two weeks.
A short time after the use of the Bactrim and Levaquin my health "drastically" improved. I was functioning around 45-50% consistently. That doesn't sound like much, but that's extremely good for me.
I agree with you. I was going to say Doxycycline + Rifampin for Bartonella, but I guess Minocycline would work too, Minocycline stays in the blood much longer, and is more powerful. *Titrate it slowly, as always.
I don't know, it isn't my place....But, if it were me, I'd get a second opinion (meaning, switch doctors....)
Posts: 371 | From CT | Registered: Jun 2008
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
I, too, would not stick with an LLMD if s/he does not treat co-infections. That doesn't sound like a LLMD to me, actually. Co-infections are a huge problem with lyme disease. There's no way a LLMD would ignore them or refuse to treat them.
I find that quite odd.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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posted
Yeah you need to find another doctor. The first supposed LLMD I saw just told me I didn't have lyme (since my CD-57 was at 356) and tested me for coinfections which came up negative....but the key was he only tested me for babesia microti.. turned out I had another species of babesia the whole time.
Sounds like you have bart though, just my guess. I don't think there is a test that can find most of the bart species right now either.
Posts: 499 | From Indiana | Registered: Oct 2007
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Personally, I think you'd be doing better than 30-40% if you were treating coinfections. If you have babs, you need to get it treated. My LLMD treats bart/babs/Lyme all at the same time.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Does anyone know if low dose cortisol would throw this test off?
I'm getting it soon. I know cortisol can influence the immune system negatively but wasn't sure if cortisol use would produce a false reading (maybe at higher doses of cortisol).
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
My opinion.....
I'd say that yes, lyme is a factor. The CD-57 is low.
From what you are describing, with the Levaquin, I'd also agree that BLO is a DEFINITE suspect.
I'd shoot for 3-5 months of Levaquin, along with something to address Lyme, personally. The Rifampin IS considered an alternative for BLO (but it seems not as good) if the Levaquin isn't possible.
Hopefully what you're planning to try might make a positive difference for you. I really hope it helps you.
How would your LLMD feel about possibly adding in some of Dr.Zhang's artemisinin, in case there's an undetected Babs at play too?
Did you have any Babs Sx? Both Babs & Bart (BLO) can impact the immune Sx. I would DEFINITELY suspect BLO, though.
That's my 2 cents, FWIW.
Lymeorsomething- STEROIDS?!!!
You might benefit from Zhang's book on Lyme. I just read it. He has some herbs that he recommends for taming overactive immune response that don't have the same potential for detrimental effects that the steroids do.
I'm sorry I can't remember which herbs do what yet. I haven't read it three times yet.
I believe Stephen Harrod Buhner also has herbs that he recommends instead of steroids, in his book.
I do like the fact that Zhang is an MD, as well as a DCM, though. I found the book very interesting.
Good luck to both of you. Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote: My opinion.....
I'd say that yes, lyme is a factor. The CD-57 is low.
From what you are describing, with the Levaquin, I'd also agree that BLO is a DEFINITE suspect.
I'd shoot for 3-5 months of Levaquin, along with something to address Lyme, personally. The Rifampin IS considered an alternative for BLO (but it seems not as good) if the Levaquin isn't possible.
Levaquin is out of the question at the moment, as I don't have a consistent supply that I can access. However, I do have a plan.
quote: Hopefully what you're planning to try might make a positive difference for you. I really hope it helps you.
Here is my plan:
I ordered 3 Zhang herbs to begin, which I'll combine with the Rifampin, Minocycline, Amantadine.
2 Months Supply of Artemisia (Fights Babesia, Can Stand Alone) 2 Months Supply Of Coptis (Fights Lyme and Bartonella) 2 Months Supply Of HH (Fights Lyme And Bartonella)
I'm going to include 30mins to 60 mins of Cardiovascular exercise wearing heavy sweat pants and a sweat shirt daily.
So, those are currently my big guns. I have to figure out what my dose is going to be for each drug though. I told the Doctor I wanted
300 x 2 Rifampin 200 x 2 Minocycline (Start off with just 100 x 2) 100 x 2 Amantadine
If I can do all three, I can attack every single infection comprehensively. Dr. Zhang's Art does --not-- require an added antibiotic combination nor Mepron or Malarone. The Art alone, in this particular formula can be used as a standalone and perform very well.
The last supplements are the cheap yet important ones
Grapefruit Seed Extract Liquid, Nutribiotics ALIVE, Source Natural's Multivitamin ALA (Generic is fine, going with NSI) NAC (Generic is fine too) Nutrimedix Samento
Then, to finish off the Lyme, an EMEM3D2 Rife Machine. I'll do that after I've taken time off all the treatments, when I'm symptom free hopefully, and start throwing the last punches.
quote: How would your LLMD feel about possibly adding in some of Dr.Zhang's artemisinin, in case there's an undetected Babs at play too?
He would tell me not to waste my time. I'm going to do it regardless.
quote: Did you have any Babs Sx? Both Babs & Bart (BLO) can impact the immune Sx. I would DEFINITELY suspect BLO, though.
All testing has been negative for co-infections. I'm waiting for the Fry Labs smear to come back.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
DANG Mike!!! Talk about a plan?!!!
I know exactly how you're feeling right now because I'm in the same darn place.
I'm on Biaxin, goint to get "PICCed on" tomorrow so I can start Rocephin. While I've been waiting for the PICC, I've started Dr.Z's Artemisinin, Copmine and Allicin (P!U!!!). I took the HH and Cordyceps with them but ended up with my head too scrambled so I stopped them for now.
I also went back & ordered the Circulation P, Puerin & A1#3. To try to combat the MS stuff & the "chicken-wire" rash thing, while treating.
He recommends the Allicin & Circ-P along with the Artemisinin for Babesia. My LLMD told me he also recommended the Copmine (with) for the more stubborn Babesia.
The Allicin is also good for combatting the fungals while on ABX. His R-5081, I believe contains Samento among many other herbs.
Let's give 'em heck, Mike!!!! I'm not taking this lying down any more!
I sure hope I'll still be able to post after a couple of weeks of playing around with all this stuff.
I'm "going in" anyway because I'm NOT going down without a good fight!!!
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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bettyg
Unregistered
posted
hi mike,
why would dr. put you on AMANDYDINE??
my husband is on it for extreme rolling hand tremors. they increased it to 3 pills a day and TERRIBLE SIDE EFFECTS!!
hallucinations; talking all night long in sleep; and extremely moody/temper outbreaks ...
he stopped it after telling me about the 2 little boys sitting on our basement steps for 1 week!!!
mike's dr. is an infectious dr. who is lyme literate...
lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
betty from what I understand Amantadine is used to increase Natural Killer cells.
BTW I didnt see that count in the lab work perhaps I am missing something?
Amantadine also increases Dopamine. Schitzophrenics also have an abnormally high rate of Dopamine in certain sections of their brains which cause halucinations.
Perhaps this is why your hubby is experiencing side effects?
Im speaking generally here. I dont know the full details without google. Lymbrain thank-you....
Posts: 2905 | From New England | Registered: Sep 2004
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You stated "A short time after the use of the Bactrim and Levaquin my health "drastically" improved. I was functioning around 45-50% consistently."
I'm no doc, but doesn't that scream to you Bartonella?
Even after you told your doc how much you improved on this abx he still won't treat you? Can you convince him?
Is another LLMD an option for you?
Sorry I can't help you w/ the tests results but I will tell you my CD-57 was low ( 15) in the begining of this @#%$'in mess. The doc I now see doesn't do that test. I will tell you I'm doing much better these days.
-------------------- Stella Marie Posts: 694 | From US | Registered: Apr 2005
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Sounds like you have put a lot of research into your plan. Wish you luck, but not really sure your combo will do the trick.
Hubby is on many of the same things you will be taking -- he was more or less stabilized until he increased his Zithromax from 300 mg 3 times per week to 600 mg 3 times per week. The last week has been pretty rough with the return of many symptoms.
Would definitely suggest only adding 1 thing at a time and increasing all meds gradually.
Hubby has been on Amantadine at 100 mg twice daily for about 5 years -- doesn't do much for his tremors but supposedly works on the Borna virus we think he got from a tick.
If you have never taken Minocycline then be sure to go slow on that one. Hubby takes 100 mg 3 times per week. He also takes the HH -- one capsule 3 times per day.
Hubby is planning to increase the Rifampin from 300 mg daily to 600 mg daily over the next 2 months. I plan to increase his dose by 75 mg every 10 days. Hope he can stick to the plan.
Would definitely add in the Circ P or Vitalzym or something for hypercoagulation. If you are successful in killing off the Bart or BLO don't be surprised if your RBC goes down.
Your CBC looks pretty good. The other number to watch is the RDW -- if you have Babs that number could start increasing while treating the Bart.
Good luck and keep us posted.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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bettyg
Unregistered
posted
lymeherx,
thanks for yur comments on amandatine; hubby is on it for his parkinson's and tremors.
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Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
This is what my LLMD gave me regarding CD57
Test interpretation:
Patients who do not have Lyme have counts above 180
180 is normal
Above 60 Lyme activity indicates improvement and treatment response
0-60 Chronic Lyme disease or relapse
Below 20 Severe illness
Borrelia (Lyme) is the only organism known at this time to suppress the CD57
A decrease in the CD57 lymphocyte subset is an important marker of chronic LD, it is used to help determine how active the Lyme infection is, how well the treatment is working and whether, after treatment ends, a relapse is likely to occur.
Posts: 1172 | From UK | Registered: Jan 2007
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote:DANG Mike!!! Talk about a plan?!!! [lol]
I plan on getting more brutal too as I can financial afford the costs. Some of Dr Z's other treatment suggestions would be optimal to add, but all I've included is the brute force treatments. I figure the exercise and Amantadine will get the drugs deep into tissues.
quote: I know exactly how you're feeling right now because I'm in the same darn place. [Big Grin]
I'm on Biaxin, goint to get "PICCed on" tomorrow so I can start Rocephin. While I've been waiting for the PICC, I've started Dr.Z's Artemisinin, Copmine and Allicin (P!U!!!). I took the HH and Cordyceps with them but ended up with my head too scrambled so I stopped them for now.
Yeah, you have to start slow, it takes time to get up to full routine. I expect it to take me a month or two.
quote: I also went back & ordered the Circulation P, Puerin & A1#3. To try to combat the MS stuff & the "chicken-wire" rash thing, while treating.
That's exactly what you should do, with those types of symptoms. I don't have any of that, and I'm pretty sure circulation is good. I think I've lowered the load to the point where my hands and feet aren't cold, where blood flow is moderate.
I would like to add the CP, but just can't justify the cost.
quote: He recommends the Allicin & Circ-P along with the Artemisinin for Babesia. My LLMD told me he also recommended the Copmine (with) for the more stubborn Babesia.
Yes, that's what he recommends. I'm throwing the Kitchen Sink at it by going right to the Coptis, and Artimesia. Any particular reason Dr. Z doesn't use HH when treating Babesia? I know it has no effect on it, but why would it be discontinued?
quote: The Allicin is also good for combatting the fungals while on ABX. His R-5081, I believe contains Samento among many other herbs.
Exactly. That's why I'm going for the kill with the GSE and Samento together with the NAC, and ALA. His stuff is really good, but I had to choose my weapons based on cost over the long term -- what could I afford every single month consistently? So that's how I came up with this plan.
We're going to rape this infection.
quote: Let's give 'em heck, Mike!!!! I'm not taking this lying down any more! [cussing]
I sure hope I'll still be able to post after a couple of weeks of playing around with all this stuff. [dizzy] [Wink]
I'm "going in" anyway because I'm NOT going down without a good fight!!!
Kick their *** , seabass. haha
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote: mike, why would dr. put you on AMANDYDINE?? my husband is on it for extreme rolling hand tremors. they increased it to 3 pills a day and TERRIBLE SIDE EFFECTS!!
Dr. Burascanno recommends Anantadine or Plaquenil with intracellular antibiotics usually, like Biaxen, Zithromax, Rifampin etc. That's why Dr. D is doing that. I told him it wasn't necessary, but he said "Just do it for me, to...make sure these get deeper." and so I said "Fine" -- I figure he was willing to bend a lot and listened to my suggestions of Rifampin and Minocycline.
Think about it, getting Dr. D to use Rifampin and Minocycline is like watching the second coming of Christ. It's just not something that happens everyday!
He also -- in-spite of everyone's claims -- wants me to go right to the IV again. He wants to use IV Vancomycin, and Oral Ceftin.
I told him "No way man. But....if it comes to it and I have no choice after I've done things my way for awhile, I'll consider a port-a-cath and the Vanco again."
See, I don't think Lyme is the primary cause of my symptoms right now. I think it "is" a problem, but my CD-57 is 85 now, and while most of my numbers are in the normal range, most of them are low, inspite of eat well, exercising, and all the things I do.
That screams Co-infection, the response to Bactrim? Screams Bartonella. The horrendous Night-Sweats? Could be Babesia, I'll know more soon hopefully.
IV Vanco and Ceftin "are not" going to help me in those areas!
quote: mike's dr. is an infectious dr. who is lyme literate...
Yeah, it's hard to accept, but Dr. D is Lyme Literate, he's just not getting the second half of the equation the "and associated diseases" -- you know like ILADS. I personally think it's a matter of politics. I feel like he's not aggressive because he's under the gun. I believe, just like Pamela stated in Cure Unknown, that the only reason he's aggressive with me now is because he knows me well, he knows I didn't sue his *** the last time I was on IV Vanco and got Line Sepsis and he didn't return my calls for a week while hospitalized.
The fact is, he can't be there with over 10,000 active patients. He simply can't monitor the complexity of individualized plans, so he stays soft with the Tetracyclines and Biaxen/Plaquenil plans.
Good guy, good doctor -- but he's not the best resource if you can financially start somewhere else. I do still recommend him. He's a fantastic place to get the ball rolling and to not get ripped off. You can get a diagnosis started there, you can get disability paperwork rolling. He'll often easily diagnose Fibromyalgia and chronic Fatigue secondary to Chronic Lyme Disease, thus allowing insurance and disability coverage, even if the CLD is dismissed by insurance companies.
The big warning however is: You have to know something about tick-born illness before walking in the door, because you aren't going to get an education with him. You'll get bare-bones introduction to Lyme alone and long term antibiotic therapy. You will not be tested, so you need to understand Igenex testing and other lab testing on your own, or through here at Lymenet.
So I try to inform people that if they start with him, make sure to move onto a second opinion with someone who is specialized in both co-infections and individualized treatments.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote: Hey there Metallic,
You stated "A short time after the use of the Bactrim and Levaquin my health "drastically" improved. I was functioning around 45-50% consistently."
I'm no doc, but doesn't that scream to you Bartonella?
Absolutely. I'm nearly 100% positive it's Bartonella I'm dealing with. I'm covered in stretch marks, so I never associated them with Bartonella. As a bodybuilder, and as a patient who was given extensive steroids earlier in my life, I couldn't differentiate skin abnormalities, but today when I look, I'm covered in bruises, scars, stretch marks -- all types of skin damage, many of which are signs of Bartonella. Skin rashes constantly.
quote: Even after you told your doc how much you improved on this abx he still won't treat you? Can you convince him?
I convinced him to do Rifampin, Minocycline and Amantadine.
Those -- if I get the dose I want -- will help significantly with both the Lyme and Bartonella, as well as potential tick-born infections I'm unaware of. Combined with the Zhang herbs, the added supplements, the routine is a knock out.
The Rife machine will be the double punch. If I have to return to a different drug, I'll throw some of my supply of Levaquin. If anyone wants to send me their Levaquin supply that's left over, PM me here. I have a month or so supply. I need another 2-3 months worth.
quote: Is another LLMD an option for you?
Yes, I've spoken with 4-5 others. Dr. H in NY said "Bartonella." -- when I explained the case. He's not my LLMD, but I see him because my girlfriend sees him. I spoke to another Dr. H here in MA, in Western MA -- she was a second opinion. It was not a good second opinion beyond confirming Lyme Disease as a diagnosis. Later, Western Blot testing confirmed both of their diagnosis as correct. That's terrific and all, but when you tell me co-infections aren't a problem, and I've seen "two" then, I was at a loss. So it took me awhile to get a grip and to start doing my own experiements. I hate subjective testing, but I had to do it. Hence the Bactrim test trial.
quote: Sorry I can't help you w/ the tests results but I will tell you my CD-57 was low ( 15) in the begining of this @#%$'in mess. The doc I now see doesn't do that test. I will tell you I'm doing much better these days.
S'ok, I'm pretty sure it's saying what I've known for awhile. Immunity is suppressed, and Lyme is active, but it's not the primary player at the moment. I know Lyme is a problem because I "just" tested with Igenex about two weeks ago, and my Igm had about 8-9 bands.
And 85 tells me, I'm stable enough with Lyme that I'm not dying or bedridden from it, which would make sure given my experience.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote: Mike,
Sounds like you have put a lot of research into your plan. Wish you luck, but not really sure your combo will do the trick.
It's subject to change. If I had the financial resources there are a couple things I'd add. I'd love to use VSL #3. If my father comes through on the one hundred dollars he said he'd put towards my treatment, I can afford the Circulation P and VSL #3.
quote: Hubby is on many of the same things you will be taking -- he was more or less stabilized until he increased his Zithromax from 300 mg 3 times per week to 600 mg 3 times per week. The last week has been pretty rough with the return of many symptoms.
I'm sorry to hear that he's struggling. I really hope the guy feels better.
quote: Would definitely suggest only adding 1 thing at a time and increasing all meds gradually.
Absolutely. I began ALA and NAC recently. So now I'm on the Multivitamin, and those two. In a couple weeks I'll begin the next one, which will likely be GSE or Artemisia.
quote: Hubby has been on Amantadine at 100 mg twice daily for about 5 years -- doesn't do much for his tremors but supposedly works on the Borna virus we think he got from a tick.
I personally think it's near worthless, but, I could be wrong, so I let Dr. D include it. I've never heard of a progress made with it in combination.
quote: If you have never taken Minocycline then be sure to go slow on that one. Hubby takes 100 mg 3 times per week. He also takes the HH -- one capsule 3 times per day.
Yeah, I've been warned about dizzyness and neurological/cognitive symptoms. I'll begin with 50 mg per day probably.
quote: Hubby is planning to increase the Rifampin from 300 mg daily to 600 mg daily over the next 2 months. I plan to increase his dose by 75 mg every 10 days. Hope he can stick to the plan.
He'll do well I think. You're throwing everything at this thing!
quote: Would definitely add in the Circ P or Vitalzym or something for hypercoagulation. If you are successful in killing off the Bart or BLO don't be surprised if your RBC goes down.
My platlets are actually low, and I exercise for an hour each day doing cardivasular exercise. This is the reason I didn't include the Circulation P. I really want to add it, but financially I'm at the end of my strap unless my father pulls through.
It's hard living off 1000 dollars a month, with rent of 600, a car, and utilities and food. Pulling out of pocket treatment out of my *** is killing me.
quote: Your CBC looks pretty good. The other number to watch is the RDW -- if you have Babs that number could start increasing while treating the Bart.
Good luck and keep us posted.
Bea Seibert
Bea, thank you so much for your advice. If there is anything you're adamant about, what would you say is most critical, that I'm not doing? If I can squeeze by God's grace one more thing, what should it be?
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Everyone thus far, thank you for the additional advice. It's useful for other people too I think to see what's being done. Getting indepth details on these tests is so important.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
Don't really have any more specific suggestions at this time. Think it depends a lot on how symptoms evolve while treating the Bart or BLO. I do think if you have Babs that will become evident if the treatment for Bart is effective -- the more Bart that is killed then the more Babs symptoms will emerge in my opinion if that is also present.
Hubby did one month of Levaquin at 250 mg and then 4 months at 500 mg before starting his current protocol which includes Bactrim, Minocycline, Rifampin, Zithromax and Alinia plus HH and numerous other herbs and supplements.
He never had problems with heart palpitations until he started the Zithromax. Pretty sure that is working on the Bart primarily. Actually increasing the Rifampin by 75 mg (up to 375 mg now) seems to have calmed the palpitations.
His primary symptoms have always been neurological and gastrointestinal. Every change in meds causes some sort of symptom flare for him.
I do plan on adding in something else to hubby's regimen in a month or two after he gets up to dose on the Rifampin and Alinia. Haven't decided if it will be Olive Leaf extract or Stephania root or possibly andrographis. I am skeptical that his current regimen will be sufficient to knock out the Bart or BLO or whatever it is.
Kidney function is one issue you need to be concerned about while on multiple meds. I added nettle leaf tincture to hubby's herbal tea and he thinks that is helpful.
Hubby's CD57 was 49 when tested in February. But this didn't surprise me as his WBC has been slightly low for the last year or two. It fluctuates between around 4.0 and 4.5 I think you have to look at both the CD57 and WBC together. If the overall WBC is low then it seems logical that the CD57 might also be a little low as well.
Hubby just started cordyceps to improve immune function. Not sure if this will help or not. Reishi mushroom supplements used to be helpful but stopped working after a year or two. In my opinion if his WBC starts improving that will be a sign that the Bart treatment is actually working.
Good luck and keep us posted.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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One more thing. Don't know if you do any protein drinks or not. If you do then I would suggest you check the glutamine content. Glutatmine seems to be one of the amino acids that Bart loves -- one of the reasons it causes so many G.I. symptoms probably.
I posted a medical abstract about this a year or two ago.
I personally have little confidence in grapefruit seed extract. Hubby was taking this at the time he got sick. But he was also taking glutamine powder for gastritis. Maybe they canceled each other out?
His first of 6 endoscopies over the last 7 years showed chronic gastritis and his stomach was uniformly red from top to bottom. Of course the gastroenterologist had no explanation.
This is not medical advice, just my opinion based on hubby's experiences.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Zhangs protocal doesn't have you Taking things in that order. HH is in the second phase. I've heard that he will do a phone consult if you are taking his herbs. I strongly advise that you call him or check his protocol.
My Naturapath as well as Zhang believes that we need to treat the coinfections in order to effectively treat our Lyme.
I start on phase two next week.
HH is very strong.
Gail
-------------------- Gail Posts: 234 | From Sterling, Ma | Registered: Jan 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Gail, The Dr. Zhang's protocol is different from the order of herbs I'm going to be using. I read his book. I'm not following the Zhang protocol as prescribed in the book, because I've already extensively treated Lyme Disease, and I'll be using Rifampin and Minocycline in combination with this treatment, on top of a proton pump inhibitor and Amantadine.
I sent you a PM giving you the information on his protocol. Hope that clarifies things.
I received my results from Fry Labs. The results are not surprising to me.
Result:
Few Coccobacilli adhernt to erythrocytes. This is suggestive of Hemobartonella or Mycoplasma spp."
The conclusion I've drawn is simple. I have BLO. It's clear as day. I responded to Bactrim, partial response to Tetracycline, I'd used Levaquin previously, again, good response (But I was using Bactrim at the same time).
I'm going to perform a second subjective experiment using Levaquin shortly. I'll do another 2 week course.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote: Metallic,
Don't really have any more specific suggestions at this time. Think it depends a lot on how symptoms evolve while treating the Bart or BLO. I do think if you have Babs that will become evident if the treatment for Bart is effective -- the more Bart that is killed then the more Babs symptoms will emerge in my opinion if that is also present.
When treating, I note that I recover extremely quickly. Bactrim, Levaquin -- within 2 weeks I feel much better. However, I haven't differentiated the Levaquin. I'm going to use it by itself, to figure out what's going on.
quote: Hubby did one month of Levaquin at 250 mg and then 4 months at 500 mg before starting his current protocol which includes Bactrim, Minocycline, Rifampin, Zithromax and Alinia plus HH and numerous other herbs and supplements.
Bactrim I had huge results. I had zero results with Zithromax. We'll see what happens with the Minocycline and Rifampin treatment. The herbs should work well.
quote: He never had problems with heart palpitations until he started the Zithromax. Pretty sure that is working on the Bart primarily. Actually increasing the Rifampin by 75 mg (up to 375 mg now) seems to have calmed the palpitations.
I used to have a lot of heart palpitations. I had them while using Bactrim, and Tetracycline.
quote: His primary symptoms have always been neurological and gastrointestinal. Every change in meds causes some sort of symptom flare for him.
That's exactly my problem. Inflammatory Bowel Disease (Crohn's Disease), irritable bowel, gastritis, severe reflux disease.
quote: I do plan on adding in something else to hubby's regimen in a month or two after he gets up to dose on the Rifampin and Alinia. Haven't decided if it will be Olive Leaf extract or Stephania root or possibly andrographis. I am skeptical that his current regimen will be sufficient to knock out the Bart or BLO or whatever it is.
Dr. H in NY believes strongly in Olive Leaf Extract for viral aspects of co-infection. Just an FYI that might be of value.
quote: Kidney function is one issue you need to be concerned about while on multiple meds. I added nettle leaf tincture to hubby's herbal tea and he thinks that is helpful.
I've done well in that area, fortunately.
quote: Hubby's CD57 was 49 when tested in February. But this didn't surprise me as his WBC has been slightly low for the last year or two. It fluctuates between around 4.0 and 4.5 I think you have to look at both the CD57 and WBC together. If the overall WBC is low then it seems logical that the CD57 might also be a little low as well.
Yeah, my WBC has always been "mild" on the low end of the range. And with a CD-57 of 85.
quote: Hubby just started cordyceps to improve immune function. Not sure if this will help or not. Reishi mushroom supplements used to be helpful but stopped working after a year or two. In my opinion if his WBC starts improving that will be a sign that the Bart treatment is actually working.
Yeah, I think immune stimulants will be effective later in treatment. Right now I'm concerned about reactions (autoimmune like responses), so I'm going slow.
quote: One more thing. Don't know if you do any protein drinks or not. If you do then I would suggest you check the glutamine content. Glutatmine seems to be one of the amino acids that Bart loves -- one of the reasons it causes so many G.I. symptoms probably.
I haven't had any pain or difficulties using the protein supplements, but I've noticed no difference in symptom patterns in taking it or not. I've been on and off it for years.
quote: I posted a medical abstract about this a year or two ago.
I personally have little confidence in grapefruit seed extract. Hubby was taking this at the time he got sick. But he was also taking glutamine powder for gastritis. Maybe they canceled each other out?
Did you ever see the Brorson experiment with the GSE? If it has value in Lyme, which I suspect it does, it likely has something to do with the Brorson papers. I really don't know though.
quote: His first of 6 endoscopies over the last 7 years showed chronic gastritis and his stomach was uniformly red from top to bottom. Of course the gastroenterologist had no explanation.
I had the same problem, with multiple colonoscopies and endoscopies. His case sounds an awful lot like mine.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
Hair loss Shooting Pains Neck and joint pain Fatigue Hypersensitivity Sound sensitivity Light Sensitivity
---------------------------
The rest of my symptoms are moderate, low or entirely resolved. Here was the progression of my disease status from the beginning, until new symptoms stopped occuring. Here is a summary of my experience, and then the list of symptoms in order of appearance.
I grew up in E. Longmeadow MA. I camped and visited the beach areas of Westerly RI, and southern CT Old Lyme as a young child. I was active in exploring the woodland areas. In 1987, Age 9 after coming home from Westerly RI, I fell ill, with joint pain, flu-like symptoms, muscle pains, and severe pain in my legs which caused debilitation. No rash was seen, nor do I remember one, but I wasn't looking for one.
Age 9 - 14: After the initial flu-like symptoms, I experienced sporadic chronic fatigue and serious depression. The flu-like fever and pain disappeared. Vision disturbances increased, including: seeing stars, losing my vision a few times, light sensitivity, drowsiness as well as cognitive deficits in memory and other areas.
Age 14 - 17: Prior symptoms increased considerably. New symptoms including: suicidal thoughts, mania, depression, fatigue, pain, visual problems, nightmares, as well as systemic pain through my muscles, internal organs, and especially my digestive system. Physical exertion during sports would cause black-outs.
Age 17 - 21: I developed bleeding from the rectum, severe abdominal pain, nausea, stomach cramping, heart palpitations as well as multiple chemical sensitivities. If I ate anything that contained sugar/refined simple carbohydrates, dairy especially Milk the symptoms would increase significantly. I had become allergic to almost all foods and began to no longer eat. Motor coordination increasingly deteriorated, muscles weakness became profound. I experienced exhaustion, numbness, headaches, and finally full blown chronic fatigue, hair loss, chronic muscle and joint pain, serious psychiatric problems and light and sound sensitivity.
Age 22 - 29: Every week between 12/99 and 04/00 I noticed about 5-10lbs being lost. I was 205lbs and then 125lbs in 4 months. I was diagnosed with a lot of ailments, but this was the first ``physical'' diagnosis that the physicians could see. Crohn's Disease, Acid Reflux were diagnosed. Once diagnosed with Lyme, at age 24, I began improving inconsistently after 4-6 months, and then relapse continued throughout the course of treatment thru the present. Periods of improvement have increased from a week or two during 2002, a day here, a day there, to about 2-3 weeks in 2003. In 2004, symptoms continued to be difficult, but around 1 month, if added up, I felt around 40% functional. 2005, IV antibiotic therapy lasted 4 weeks, and I improved for about 3 months. In 2006, again, I was improving for 2-3 months. At my worst, I was 5% functional. 65% is the best I've felt, but only briefly.
Symptoms History
* 1987 - Unexplained flu symptoms: fevers, sweats, chills * * 1987 - Swollen glands * * 1987 - Difficulty with concentration or reading * 1987 - Forgetfulness, poor short term memory * 1987 - Joint pain or swelling * * 1987 - Muscle pain or cramps * 1987 - Memory impairment or loss "brain fog " * 1987 - Dyslexia and word-finding problems * 1987 - Attention deficit/hyperactivity disorder * 1987 - Anxiety * 1988 - Nightmares * * 1988 - Sore throat * * 1988 - Fatigue, tiredness, debilitating * 1988 - Confusion, difficulty in thinking * 1988 - Visual/spatial processing impairment trouble finding things, getting lost, bumping into things * 1988 - Slowed processing of information * 1989 - Sleep Disorders, insomnia, waking up constantly. * 1990 - Violent behavior, irritability * 1990 - Rage attacks/impulse dyscontrol * * 1990 - Lightheadedness, wooziness, difficulty walking * 1990 - Tremor * 1991 - Depression * 1991 - Antisocial behavior * 1992 - Exaggerated symptoms & hangover from alcohol * 1992 - Twitching of the face or other muscles * 1992 - Headaches * * 1992 - Blackouts/Fainting * * 1992 - Tingling, numbness, burning, stabbing sensations * 1992 - Heart murmur, valve prolapse, pulse skips, * * 1992 - Stiffness and cracking of the joints, neck, or back * 1992 - Eyes: double, loss, blurry, pain, increased floaters * 1992 - Ears/hearing: buzzing, ringing, ear pain * 1992 - Dizziness, poor balance. * 1992 - Sexual dysfunction or loss of libido * * 1993 - Unexplained weight change * 1993 - Shortness of breath, cough, * * 1993 - Change in bowel function constipation, diarrhea * * 1994 - Obsessive compulsive disorder OCD * 1995 - Abdominal Pain, Acid Reflux, Nausea * 1995 - Rapid mood swings that mimicked bipolarity * 1996 - Disorientation: Getting lost, going to wrong places * 1996 - Excessively itchy skin * * 1996 - Hands and/or bottom of feet ache * 1996 - Blood sugar changes * * 1996 - Photophobia * 1996 - Phonophobia * 1996 - Upset acidic stomach and nausea * 1996 - Chest pain or rib soreness * 1997 - Unexplained hair loss * 1998 - Cold hands/feet, Clammy * 1998 - Night sweats * 1999 - Transient muscle pain which jumps around the body * 1999 - Extreme weight loss 80lbs in 4 months * * 2000 - Sleep Paralysis * * 2000 - Testicular pain * * 2000 - Crohn's Disease * 2000 - Irritable bladder or bladder dysfunction * * 2000 - Panic attacks * * 2000 - Facial paralysis, drooping eye lids Bell's palsy *
Blood Testing
********Many of these tests I've had "over and over" again, so I've only listed those which I felt reflected abnormalities over the long term.********
Quest Lab WB: IgG 41kDp Positive
Quest Lab SED ........................................1 Range 0-15 Antigliadin IgG .........................49H Range 0-19 Antigliadin IgG 4........................29 Range 81-463 RDW ....................................14.4 Range 11-15 EOS ................................. 0 Range 0-5 BASO ......................................O Range 0-3 ATYP L ....................................0 Range 0-5 BUN ........................................24 Range 7-25 Absolute Eosinophil .....................0 Range 15-550 Absolute Basophil Count ..............0 Range 0-200 Absolute Atypical Lymphocytes .....0 Range 0-200
Epstein Bar EBV-VCA IgG 2.2 Range 1.1 > EBNA Antibody 4.6 Range >1.0
Heavy Metal Blood
Arsenic <3 Range <23 Mercury 4 Range <=10 Lead <2 Range 0-25
HLA-DR Class DNA Typing
HLA-DRB1 07 DR7 HLA-DRB1 09 DR9
Albumin of .............................3.1 Low Visceral Protein Malnutrition Alk Phos ...............................122 High Amylase ............................... 119 High Prealb ................................. 16 Low EOS .................................... 0 Low 0-5 BASO ................................... 0Low Range 0-2 Monos ..................................12 High Range 0-12 RBC ................................. 5.6 Range 4.5-5.5 High MPV ..................................11.7 Range 7-11 High WBC .........................................High End of Range Sed Rate .................................3 0-15 Low end of range
WBC .................................17.6 H Range 4.8-10.8 RBC .................................3.7 L Range 4.5-5.5 HGB .................................10.2 L Range 13-17 HCT................................. 31.6 Range 40-51 RDW .................................15.7 Range 11.15 PLT .................................121 L Range 130-400 MPV ..............................11.5 H Range 7-11 Mono ..................................13 Range 0-12 Neut .................................88 H Range 41-85 Band .................................27 H Range 0-4 Lymph .................................1 L Range 15-48 Sed Rage ..........................27 H Range 0-15
NA................................. .132 L Range 133-145 K ...................................3.4 L Range 2.5-5.2 CL .................................111 H Range 96-108 Co2 .................................21.3 Range 21-32 BUN ....................................5 Range 5-25 MG ..................................1.8 Range 1.8-2.4 CRP .................................16.23 Range .08 - .80
7-8 Upper and Lower G.I. scopes Inflammation of Ileium, Adjacent Colon, Rectum, with Perianal Fistual, and severe eroision of the upper stomach Reflux and Gastritis
Lower G.I. Barium: Inflammatory disease of the terminal ileium.
Comprehensive Stool Analysis: Low N-buytrate, extremely low levels of lactobaccilli and Bifidobacteria. High levels of Citrobacter freundii, High levels of Klebsiella. Extremely high levels of Candida Albican. Dysbiosis was severely evelevated suggesting extreme alteration of gut bacteria.
CT scan of abdomen: mild muscosal thickening of lower bowel Cecum, Right Colon and Transverse Ileium
Physical Examinations:
Significant Trigger points on large and small joints. Multiple trigger points along back, chest and arms suggestive of Fibromyalgia Hyperreflexia of the major joints Snellen Test: Right Eye 20/25, Left Eye 20/20, Both Eyes 20/20 Mild to Moderate Photophobia and Phonophobia
Neuropsychiatric Evaluation:
Significant problems with visual short term memory, considered in the range of mild impairment. Auditory recall appears borderline level of functioning. Visual tracking and letter number sequencing average to low average range. Results indicate Memory difficulties consistent with right temporal lobe impairment of the Brain SPECT. Diagnosis: Major Depressive Disorder, recurrent, severe, Chronic Lyme Disease. Problem areas include social environment, educational, occupational, economic, and access to health care. Current Global Assessment of functioning, Score 40. Highest GAF in past year: 40
Ritalin SR 20mg - ...................................No Response Lithium -............................................... No Response Prozac - ...............................................No Response Disiprimine - ...........................................No Response Eskalith 400mg x 2 - ................................No Response Norpromine 100mg po t.i.d - ......................No Response Imuran - ................................................Poor Response Cefotan - ..............................................Fair Response Percocet - .............................................Fair Response Proctofoam - .........................................Poor Response Nitroglycerin - ........................................Poor Response Lorazepam 1mg x 1, then 2mg x 1 - ............Great Response Protonix 40mg x 1 - .................................Great Response Nexium 40mg x 1 - ...................................Great Response Sulindac 150mg x 1 - ................................No Response Roxicet 5/325 - .......................................Fair Response Trovan - ................................................Great Response Metronizdazol 250mg - ..............................No Response Zithromax 250mg and 500mg - ....................No Response Prednisone 10mg, raised to 80mg in total over time. Initial Fair Response, Then Debilitating Poor Response and Relapse. Azathioprine - .........................................No Response Cipro 250mg -......................................... No Response Prilosec - ...............................................Great Response Asacol 3,600mg per day -.......................... No Response Tuberculine S ...........................................No Response Methotrexate - ........................................No Response Paxil 20mg - .............................................Poor Response, Induced Panic Attacks Remicade 3 infusions 300mg - .....................No Response Morphine 15mg - .......................................Fair Response Zoloft 50mg - ..........................................Poor Response - Induced Panic Attacks Demerol - ...............................................Great Response Removed All Pain Pentasa 1,000mg x 4 - ..............................Good Response Reglan 5mg po a.c. - .................................Great Response Tylenol 650mg - ........................................Fair Response Aspirin 625mg - .........................................Fair Response Droperidol - ..............................................Poor Response Prevacid 30mg - ........................................No Response Ambien 10mg - ..........................................Poor Response Amitripyine 25mg x 1 - ................................No Response Compazine 10mg every 8hr, .........................Great Response Tetracycline 750mg x 2 then 1,000mg x 2 - ....Good Response, Relapsed Biaxen Clarithromycin 500mg x 2 - ..............No Response Plaquenil 200mg x 2 - ..................................No Response Tramadol 50mg as needed, ..........................Good Response Oxycondone 5mg through 325mg every 4hr, ....Great Response Lidocaine 2% gel, ......................................Great Response Phenergran 12.5mg po 4-6hr as needed - .......Great Response Penicillin VK 1000mg x 2 - ............................Good Response, Relapsed IV Vancomycin 1gram through 1.250gram -..... Good Response, Relapsed Lamictal 100-300mg - .................................Good Response Bupropion 100mg -300mg - ...........................Fair Response Sonata 10mg - ...........................................Poor Response Trazadone 50mg - .......................................Poor Response Lunesta 2mg - ............................................Poor Response Hydroxzine HCL 25mg - ................................Great Response Ranitidine 150mg x 1 - .................................No Response IV Levaquin - .............................................Great Response, Relapsed Zantac 150mg x 2 -.................................... No Response Sulfameth Trimethoprim Bactrim 800/160 x 2 - Great Response, Relapsed Darvacet - Induced Panic Attakcs Hydrocortison Cream 2.5 Propoxyphene 100WAPAP650 1 or 4 every 4h. Good Response, Relapse
Antibiotics & Support:
8 Weeks Arithrymycin Zithromax -- No Response 24 Months Weeks Plaquenil -- .......No Response 48 Months Tetracycline -- ......... Good Response, then Relapsed 4 1/2 Weeks IV Vancomycin & Oral Penicillin -- .Good Response, Then Relapsed 24 Months Clarithromycin Biaxen -- No Response 2 1/2 Weeks Sulfameth Trimethoprim Bactrim -- Great Response - Relapsed 2 1/2 Weeks Levaquin IV - ...........Great Response - Relapsed 2 1/2 Weeks Oral Levaquin - .........Great Response - Relapsed
Herbal/Alternative
8 Weeks 4 Life Transfer Factor Plus Great Response, Relapsed Nutrimedix Samento - ....Strong Herx, Relapsed Nutrimedix Burbur -- ....Fair Response, Relapsed Nutrimedix Banderol --...Good Herx, Relapsed Nebulized Glutathione -- Strong Herx, Relapsed
I've taken a lot more herbal supplements but the results were of no noticeable value in clinical response.
Summary The BLO Dr. Burrascano talks about at length is the same Hemortonella/Mycoplasma we're seeing on these tests. No, we do not know what it is. It is a near species. It "does" respond to antibiotics, and can be -- in some cases put into a remission, or in-fact cured in some instances based on Dr. Burrascano's presentations and claims
It is not Mycoplasma, nor Bartonella H or Q as traditionally understood. However, when testing, the genus of Bartonella shows a reaction far more often than Mycoplasma, though the reaction of both is inadequate, with at best 30% accuracy. It is likely Mycoplasma is a co-infection that coincides rather than is the BLO we're seeing, though possible two separate bacteria, both appearing to look the same, could be one of the Bartonella Genus, and one of the Mycoplasma Genus. It is certainly not Bartonella H or Q though nor any commonly know Mycoplasma.
Patients testing postive for Mycoplasma or Bartonella via antibodies is "not" a parameter for this new species showing on the slides, though cross-over reactions may be present, given it could be two separate bacterium appearing as one in the visual field, or....one alone.
Experience via LLMD's points that anti-malarial drugs "do not" work on this BLO bacterium.
Clindamycin is debateable entirely, given some patients with this see no results at all, while others do. It could be matter of strains, two different bacteria, or -- something entirely unrelated, another co-infection outside the realm of this discussion of BLO (Hemobartonella/Mycoplasma spp)
BLO and Lyme Disease are present in my case. Treatment response indicates the Tetracyclines (, Tetra,), as well as Bactrim, Levaquin, Vancomycin in combination or included in a treatment regimen staggard may be of significant value. Lyme Disease seems to "always" be present when BLO is present, indicating that the infection alone may not cause disease, unless immunity is compromised as a consequence of Chronic Lyme Disease with Bb. Herbal therapies with impact the immune system by stimulation exaggerate symptoms (Herx) and or signifcantly improve symptoms temporarily. These may be of value when combined with appropriate antibiotic treatment.
Macrolide antibiotics actually decrease the treatment value of antibiotics which do work on BLO, but when used alone, or via IV, the Macrolides of Zithromax, and Biaxen have no value on this infection.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
Your panel looks alright to me, except some of your numbers are on the low side of normal.
I agree with what some others have said, based upon your results, lyme may be just a minor problem for you now, compared to any coinfections you may have.
Given that, I agree with what some others have said, if your doctor is not open, at all, to treating you for any coinfections you may have, then you really need to find one who is and will.
Last time I saw my LLMD, he actually told me he was beginning to believe treating coinfections is more concerning than treating lyme, as far as his patients getting well and quicker, but only time would tell.
That led me to think he's going to start treating his patients for coinfections more aggressively than for lyme, to see if they will actually get any better and faster.
I really like your treatment plan.
I'm thinking about following a similar one soon.
I'm already taking the following:
600mg/day Rifampin (bartonella treatment)
750mg/day Tetracycline (slowly trying to increase to a maximum of 1,500mg/day, as tolerated) (lyme treatment)
Taking HH, as an additional bartonella treatment, will hopefully, help me to completely get rid of it.
I likely have babesia, especially since I have really bad nightsweats, although I've never been treated for it. I think it's time though, especially since I haven't seen much improvement, with just treating lyme and bartonella. I believe Zhang's artemisia is a good choice, since it can be taken as a stand alone treatment and hopefully, I'll be able to tolerate it easier than prescription treatments.
I feel like I really need to be taking a cyst buster, especially considering how long I've had lyme, plus I don't want to keep pushing it into the cystic form, with any antibiotics I take, without trying to do something about it. I tried taking a sliver of Flagyl once, which caused me to have a lot of neuropathy, thus I can't tolerate taking it. I ended up not being able to get out of bed for several days, from the horrible herx it caused me, which indicated to me I have a lot of the cystic form. I believe Nutribiotic's extract is a good choice, which I can ease into more, and hopefully, I'll be able to tolerate it easier than prescription medications.
I think that's a good place for me to start and is an effective way for me to target all three infections at once, including the cystic form of lyme.
I can always tweak it, as needed.
What do you think?
I feel like I need to take an additional antibiotic, besides Tetracycline, which will target whatever form of lyme it doesn't. I don't know what form it targets though, which means I don't know what form I'm not targeting. Can you tell me what those forms are, as well as what antibiotics I could consider taking? What do you think about me doing that?
All opinions are welcome.
Of course, I will certainly inform my LLMD of my intentions and definitely won't embark upon any of them, unless I receive his absolute approval.
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Jennie, your plan seems appropriate. You may consider adding Minocycline on top of the Tetracycline and Rifampin. They work differently, and together that would be a useful combination with the other things you're using.
I think you'd be covered pretty well. Just make sure you use a probiotic. VSL #3 would be good. I'd just use 1 capsule per day to conserve money.
This battle plan is mildly expensive, but not earth shattering, which makes it a good plan I feel. You could follow the standard Zhang protocol if you want, following the Babesia treatment protocol first, which is:
Art Allicin Circulation P
Take for 40-80 days.
Switch to Standard protocl
Allicin HH Circulation P
6-12 months and possibly adding or exchanging some of those three herbs with others, depending on your response around 6 months.
This guy's website -- he's an LLND (Naturopathic), but he's very skilled. He explains the Zhang protocol.
Thank you very much for all of the information and suggestions!
They've definitely given me some more things to think about, as far as deciding what plan I want to follow.
I hope your plan goes very well for you!
Love, Light, & Health, Jennie
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
If you buy Zhang's book ($20, I think, from his website) and read it, you can schedule a free 15 minute consultation with him.
They send a form to fill out (prior to the call), with the book.
I haven't scheduled one yet. I'm still trying to figure out what questions I need to have answered.
(that wasn't for you MB, I can tell you've already done your homework. )
BTW- I've read-re-read & re-read the book again and, for reasons that escape me, I'm now taking the Artemesiae, HH and Copmine in addition to my Biaxin & Rocephin.
I like your ABX combo much better than mine though. I'd much rather bash the BLO right now, but I figure I can do the HH until I can re-address this with my LLMD.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
AliG, that's a decent routine. Yeah I've read Dr. Zhang's book twice and referenced it about 2-3 times.
I just received my prescriptions today. So here is what I currently have. I'm not saying I'm taking the Levaquin, but I have some.
55 days of Levaquin (I can get another 45 days I think)
NSI NAC
Allergy Research NAC
NSI ALA
100mg x 2 Minocycline
300mg x 2 Rifampin
1,000 mg x 2 of Pentasa (For intestinal Inflamation -- not steroid)
Lamictal 150mg x 2 (For mood swings/stabilizer)
Bupropion(Wellbutrin) 200mg x 1
HH Capsules 1 x 3 -- I bought two months worth, but will continue for 12 months
Coptis 1 x 2 (Again, bought 2 months, will continue for 6-12 months)
Artemsia 1 x 2 (2 months, continue for 80 days like Zhang says)
ALIVE Multivitamin (2 Tablets)
Nutribiotics GSE drops.
Amantadine 100mg x 2 (Antiviral, and helps Rifampin and Minocycline penetrate even deeper into cells)
This is a brutal routine. I've confirmed by reading all the research, and hundreds of patient reports. All of these supplements work, but they ALA and NAC take a long time to do their work, as they're very gentle. For a heavier detox of Heavy Metals, the Xmogen Chelex 2-4 capsules every 3rd night will do a fine job if taken for 3-6 months. I'll do that later.
These are all confirmed supplements. The NAC, ALA, GSE, and ALIVE are dirt cheap. About 15 dollars a month for all of them (Since each container lasts 3-4 months)
I also managed to get my hands on 90 days of Zithromax that I'll keep safe, as well as 90 days of Amantadine, I have another week or two of Bactrim. I can get another supply of Bactrim. It has come to my attention from someone that the possiblity of a herxheimer reaction could have caused the sun-burn skin like effect, as well as the redness. I was watching out for Steven Johnson Syndrome, that's why I discontinued the experiment, however -- I may be able to recontinue it if necessary.
The key is to avoid any unnecessary drugs, so the Levaquin, and Bactrim are sidelines, as is the Zithromax. I also have some Penicilin left over, which is useless in treating BLO and Lyme when used alone.
I have an ungodly amount of Tetracycline on hand, probably about 6 months worth.
I have a good back-up supply of drugs, should anything happen.
I have a friend really pushing Cholestepure (I think that's the right spelling, by Pure Encapsulation). It works well for detoxification and Herxheimer reactions. Dr. H in Newton MA prescribes it.
I'm considering it in the future. My Rife machine is waiting as well. My friend is pushing that too, telling me I can start it, even while on the antibiotics. He feels it's ok because I'll be on the GSE (Cyst killing)
I'm hesitant to begin the Rife or Cholestapure, Levaquin and a number of things at this point. It will take awhile just to get into the routine since it's such a strong one.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
metallic, I checked out Zhang and Steve Clark's website. Is the Zhang protocol only effective for recent infections? Neither of them comment on the success or this program if one has had LD a long time.
Posts: 3528 | From US | Registered: Apr 2007
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
In Chronic Lyme Disease, both physicians have noted that using only the herbal treatment along (Zhang's), that 60% fully recover in about 12 months time. 20% see improvements, but may remain symptomatic to some degrees, and 20% see no progress.
This is why it's important to combine the protocol down the road with appropriate antibiotic therapies or other supportive therapies (Even herbal) to entirely wipe out co-infections and whatever other diseases that may be present.
Do your homework when mixing herbs and medications. Make sure you understand the pathways in which these excite or inhibit, so you don't cause problems with therapy levels in the blood or body.
Detoxification, Heavy Metal, and other factors need to be dealt with separately.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
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