posted
i am recently dx by IgeneX for Burgdorferi & Babesia.. i have few questions but first here are the facts:
- Positive IFA Lyme tests from IgeneX (Burgdorferi & Babesia) - Positive HHV1, HHV6, EBV, Mycoplasma, - Positive Coxsackie B (Type 3 & 4), Echovirus 6, 11, 30 - Abnormal CD-57 Test (scored 32 on scale 60-360) - Equivocal Lyme C6 (Mar07... Drs said it was a false-positive)
my CFIDS Dr took me off Doxy (only on 3 days) and put me on Valtrex (3g Daily, began 7/27). i have 2 LLMD's (but one went on vacation prior to seeing results), so i hired LLMD#2. meanwhile LLMD#1 referred me to CFIDS specialist (saw him 7/27). LLMD#2 offered the following Abx Mepron, Zithromax, Rocephin (iv)), when i finish with Valtrex. i'm seeing LLMD#1 & CFIDS Dr this week and i want to have as much info as possible.
my insur offers all of the meds so that's not an issue. i just want to get the most powerful meds for aggressive treatment. i'm an athlete (5' - 10", 165 lbs) and can tolerate just about any of the side effects that may be in store. i just don't want to suffer with this illness for the rest of my life.
1. what's the best treatment available for each?
2. which should i treat first?
3. what the best anti-parasitic drug available?
4. what's the maximum daily dosage?
5. is iv better than tablets, capsules, pills?
6. should i take anti-viral, antibiotic or anti-parasitic simultaneously or separately?
i'm feeling much better now that i'm on Valtrex. CFIDS Dr said it would be better to treat viruses first so that Abx would do its job. now that Babesia is confirmed, just want opinions by fellow lymies as what to do next (i trust you folks more than i do Drs!). any advice is greatly appreciated, thanks. -- sonicbmx [email protected]
-------------------- "The hell with Drs.. we have each other!" My story began here:
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
SONIC*)!*)!
Welcome my fellow CAian*)!*)!
****1. what's the best treatment available for each?
Re Babesiosis some treatments work better for others. Malarone may be better at treating WA1 Babs 9the kind we have here in CA) than it is at treating Microti because it is better at malaria with a liver stage and WA1 is thought to perhaps have a liver stage, sequester deeper in tissue, than Microti. The LLMD Richard H found in a study with his patients that Artemisia and Mepron works better than either alone. I was on Mepron for 2 years, Art for the last 1 of that.
Sounds like you have a good LLMD*)!!
****2. which should i treat first?
Co infections or whatever is presenting most vividly are often treated first. Ther eis a theory that Babs should always be treated before Lyme and most LLMDs follow that.
**********3. what the best anti-parasitic drug available?
no clue- never used them.
********4. what's the maximum daily dosage?
Of what- the above- again, no clue- sorry*!!
******5. is iv better than tablets, capsules, pills?
IV is more powerful and has better penetration into the body into tissue BUT BUT BUT IV has risks the biggest of course being DEATH so it should never be employed unless-
* the person has very very very neuro Lyme * a range of orals has been tried without success * a quick severe progression is happening which may result in death
*******6. should i take anti-viral, antibiotic or anti-parasitic simultaneously or separately?
Talk to your doc or pharmacist*)!*)!
Anyway, welcome, welcome, welcome, I hope you know re the study in 2003 which showed that CA has MUCH more Lyme than previously believed- 17.8% in adult Ixodes Pacificus ticks in my county, Santa CRuz.
There is an online statewide group called californialyme (not run by me, I had my name first but heck, it's all good*)! at yahoo.com and I don't know the closest support group to you but they are in the support group section of this board!!!!!!!!!!!!!!!!!!!!!!!!!!
Very much welcome, Sincerely, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
p.s. There is also quinine & clindamycin for Babs but that has a lot of physically annoying side effects and is rarely used- also the cheapest which is Lariam but can have psychosis as a side effect so many docs have also stopped using that- so mainly Mepron or Malarone get used- and Artemisia which is a great herbal adjunctive therapy employed by the Chinese for centuries against malaria (but do not EVER overdose even by a little because although VERY safe at rec'd dosages at overdose it can cause irreversible brainstem damage).
Take care & welcome again*)!!!!!!!!!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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bettyg
Unregistered
posted
welcome sonic to our lyme board; you will learn alot and get the needed support when needed.
i'm sending you a private message, pm, with 62 pages of newbie links, advise, symptoms, tests, disability, much more, and TREEPATROL'S archive of over 1000 sites of good lyme info!
in there is Dr. B's long-term antibiotics 05 lyme treatment guidelines link.
also is ILADS treatment guidelines link...
to find your pm, go to above left hand posts, under HELLO your name by flashing light or my profile.
in future, what you typed here would be best in MEDICAL as 75% of members go there only and don't visit general so you'd get more replies there.
when you're down needing support, come here.
best wishes! we'll all give you the best info we can.
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posted
It sounds like you are in good hands. You want to treat the babs before the borrelia or at the same time as the borrelia, which is what I'm doing.
The best treatment? It varies from person to person. IV works better for some, orals for others.
If you are athletic, you might consider what effects a PICC line will have on your exercise program. I think exercise is important for recovery for those who are able to do it. Though you will most likely need to change your method ... you don't want to push yourself as you're healing. For example, I lift weights and do cardio (elliptical, 30 min.), but on days I feel fatigued, I skip the cardio because I need that energy for healing. When I was at my sickest, I went for months with no cardio and started back at it slowly. I'm still not back to where I was before.
I've been on Mepron (2 tsp. twice daily, which is high dose, and I'm small - 5'8", 126 pounds), Biaxin, and Artemisia for babesia. I'm also on Amoxy (7500 mg!!)/Probenecid and Plaquenil for Lyme. Nystatin to avoid yeast problems. Cholestyramine to absorb toxins.
After 8 months of continual treatment (pulsing the Artemisia - 3 mos. on, 1 month rest), we are pretty sure the babs is gone. I'm currently still on the babs meds, but will switch to Malarone, which my LLMD says is weaker than Mepron, to be certain it's gone. The rest of the meds will remain the same.
Are you talking about parasites in the GI tract? I'm taking uva ursi, plant tannins, and oregano oil for intestinal problems. Also lots of probiotics (VSL#3, Ultra Flora, and Theralac).
While your going through treatment, diet, detoxing, exercising, fresh air, sunshine, adequate rest, proper supplementation, etc. will all contribute to how well you heal. Don't think of the meds as the cure ... it's everything together that is going to make you get better.
I've gone from 15% in January to 80% now.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Welcome Sonic!
Great advice above. Glad you have a positive diagnosis and good docs.
Here's something very important:
Get a bottle of Theralac..at the website by the same name. You want to stay ahead of the yeast curve BIG time. Take one a day at bedtime, a couple hours away from recent abx dosage. Yeast can make the most stalwart miserable, trust me! Theralac is the best there is for a lot of us. (No, I have no ties to them.)
Good luck and go get em!!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
thank you all for responding! sorry for the late resonse.. i've been overwhelmed with all the research, reading & writing - it's a never ending fulltime job. i have many more questions and will post them in MEDICAL.. see you there i hope!
-------------------- "The hell with Drs.. we have each other!" My story began here:
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