posted
Hello all. After a great response from another member here I was able to meet with a lyme friendly MD where I live. She is willing to do antibiotic treatments, but unsure of the route to go. We suspect a Babesia co-infection because of symptoms, but I also have some bartonella symptoms. My most troubling symptom is the breathing trouble.
I am currently taking Doxy 100mg's twice a day. About a week into a 4 week course. What doses are good for the Zithromax?
I read Dr. Burrascano's recommendation of 750 on the Mepron, but he offered no dosing advice for the zithromax.
What doses are good for the Zithromax?
Anyone have history with breathing troubles and had success with this combo?
Is taking these with Doxy a good idea or am I asking for system overload?
posted
Thanks for the reply Geneal. I had thought that Doxy was incompatible with the other meds. I hate the thought of treating with the doxy for weeks and then treating the Babesia (assuming I have a co-infection). The air hunger has me freaked about some manifesting ARDS situation and I seem to have more co-infection symptoms than Lyme....I think.
My Doc is Lyme friendly, not Lyme literate. I am trying to find a doctor that maybe she can refer to for advice.
Funny you mention ear ringing with the ABX, I actually have terrible ear ringing since I got sick.
So what do you suggest? Treat the Babesia and then the Lyme, or vice-versa?
Speaking of that, do you know of any lab test that can accurately identify if I so have a Babesia co-infection?
Thanks much!
Brian
Posts: 14 | From Oregon | Registered: Feb 2008
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Well there are many known strains of babesia....and even Igenex
Only tests for two strains. My Fish was negative for babesia from Igenex,
Yet based on my symptoms (all of them), my LLMD diagnosed me with babesia.
Biaxin hits Lyme too....
Many of our meds cross over...meaning they can treat more than one thing.
Mepron is good for mycoplasma too.
You need to find a LLMD....
I started on doxy to lower my bacterial load.
Then right into babesia therapy (3 months) then bartonella tx,
Then babesia (again) then Lyme.....and now babesia again.
I've been treating for 18 months now. I hope I am at least half way there.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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daise
Unregistered
posted
Hi Briquewest,
I'm sorry you have Lyme.
It's very important that you get an LLMD (Lyme-literte MD) who is an ILADS physician. (www.ilads.org)
If the LLMD is in another state or whatever, your current MD, perhaps, can administer the Lyme treatment program that you need in particular, that comes from your LLMD. Every Lyme patient is different!
You have Lyme + co-infections and that is complicated to treat.
posted
Thanks for your replies everyone. I know I need a LLMD, but there is only one in my area and with this illness I cannot afford her. She doesn't take insurance. I am going to be asking my doctor to see if she can consult with her.
My doc is only lyme friendly, willing to do what it takes, but not well versed in treatment. I would be satisfied for the time being if I could treat the breathing struggles first, somedays it feels like my lungs are going to just fail and others it is not too bad.
She does want to do a CD57 but I do not think that will show co-infection. She is sending that test to Labcorps.
You mentioned Biaxin as also hitting Lyme, Geneal. Do you happen to know if it can be used in conjunction with Mepron?
Any and all advice about meds is appreciated.
Posts: 14 | From Oregon | Registered: Feb 2008
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mbroderick
Frequent Contributor (1K+ posts)
Member # 5220
posted
Why don't you contact Oregon Support Groups to see if they are aware of any other LLMD's in the state. Many people travel quite a distance to get medical care for Lyme. You could be in for big problems without someone very knowledgeable in treatment protocols.
It's doubtful that any LLMD's will provide advise on your treatment without having seen you. It wouldn't be ethical on their part to do that.
Also, try the Lyme Disease Association website. It allows you to search for doctors by entering your zip code - and also allows you to specify ILADS membership.
posted
Thanks Mbroderick for the advice and the link. I have used the referral page and it was unable to return anyone close to me. There was a doctor in Seattle I could travel to, but they do not take my insurance and 400 dollars for a visit is beyond my means financially.
I did locate my current friendly doctor through a local support group, they also put me in touch with a Naturopath Doctor that treats Lyme patients around here. Unfortunately, the Naturopath is pretty expensive too.
The other two doctors that used to provide care here no longer practice here.
If I had the means I would travel to Seattle or California, but want to do and ability to do are two different things.
Thanks for the input though!
Posts: 14 | From Oregon | Registered: Feb 2008
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daise
Unregistered
posted
Briquewest,
Mbroderick said, "It's doubtful that any LLMD's will provide advise on your treatment without having seen you. It wouldn't be ethical on their part to do that."
That's not true.
Some do, some don't. Consulting between a patient's local MD and an out-of-the-area specialist is fairly common in the medical field. Sure--in a perfect world, getting in front of a specialist is best.
But this is not a perfect world. For example, you have stated twice that you can't afford in-person visits with an LLMD. You're poor. Many with Lyme are or became poor.
Perhaps your LLMD would accept a consulting fee paid for by your insurance, when your meds and tests are covered by insurance through your local MD. Can't hurt to ask.
Hang-in there, OK? Especially for poor people, getting appropriate Lyme treatment takes time and there are hurdles, all the while you are hurting and stressed.
Do you qualify for state Medicaid? I'm not saying that's best, just consider it, according to your situation, your good local MD, and whether your insurance company will actually pay for consulting, in-person visits, and meds, etc.
Every state is different, but can you then choose your medicaid insurance company? Do they accept your local gem of a doctor?
On into the future, with a disability diagnosis, perhaps you can win Social Security Disability (SSDI.) That is another big hurdle for many with Lyme and it usually takes 2-3 years.
With that, you would, sooner or later, be eligible for Medicare (For Lymies, I suggest choosing a Medicare Advantage Plan.)
Or, if you are without any income right now, you could apply for SSI with Social Security. That's not much for a monthly benefit, but it's something. You usually then get state Medicaid in a few months. You can apply for SSDI at the same time.
Your local MD sounds like a gem because he or she is willing to get a CD57 test.
[A CD57 test is run when you've had signs and symptoms for a year or more. It is a test of how worn-down your immune system has become and is specific to Lyme. No, it doesn't test co-infections. Yes: LabCorp Lab in Dallas TX is the only one recommended.]
I tested negative three times by western blot, however I did test positive by the CD57 and that is the only reason insurance paid.
You wanted information on Lyme meds. For an initiation into what Lyme antibiotics are all about, see www.ilads.org, click "Treatment Guidelines" on the left menu and you'll get Dr. Burrascano's 33 pages of tips for 2005, and lots of other goodies. (But Ketek has since had warnings.)
However, rely on an LLMD who is also an ILADS physician. That's because some LLMD's want to sell you the moon.
I suggest you type a list of EVERY sign and symptom and give a copy to all docs you see.
When you are prescribed any med, always read and keep the pharmacy literature close at hand.
To set-up a consultation (something MD offices are not always willing to do or want to do: it can take time) you might consider calling to get a nurse case manager (care coordinator) with your insurance company. They "manage" details and arrangements for complicated illnesses. Then again, maybe not: it depends on a lot of factors.
Are you or is your spouse a veteran ? Keep in mind for the future that there are some states with places for poor veterans to live that are low cost. PM me.
[The VA's nationwide, unwritten policy is that they do not properly diagnose nor properly treat Lyme disease.]
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