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» LymeNet Flash » Questions and Discussion » Medical Questions » Need second choice

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Author Topic: Need second choice
amyb
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first i want to thank everyone again and again..this site and all your advice really helps me.

so i am just seeing a regular doctor only because i have no insurance and no money. he is willing to let me decide on the treatment and length, although im SURE a LLMD would be better this is my best route for now. anyway my REAL question is i can not afford iv treatment so i am on 400mg of doxy a day. my doctor wants me to do another oral but i am allergic to amoxy. not sure which other oral abx is good for lyme?


Posts: 362 | From west chester, pa | Registered: Apr 2004  |  IP: Logged | Report this post to a Moderator
Lymetoo
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I vote for minocycline or Biaxin [or Zithromax]. The mino would be the cheapest.
Just my opinion....I am not a dr!


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oops!
Lymetutu

[This message has been edited by Lymetoo (edited 18 April 2004).]


Posts: 96239 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
TX Lyme Mom
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amyb,
This is difficult because anything we might suggest is too close to "practicing medicine without a license". Therefore, the best thing we can suggest to you is to print out a copy of Dr. B's Treatment Guidelines from the ILADS website.

What I can tell you, however, is that LymeToo's answer appears incorrect to me. Minocycline (Minocin) is an advanced form of doxycycline, so it doesn't make sense to combine them both. Either she misread your statement, or else I'm misreading her response.


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kaos
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I don't know what other antibiotic to suggest with doxy, but I would ask the doc about going to 600mgs of doxy.

[This message has been edited by kaos (edited 17 April 2004).]


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WildCondor
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Have you been tested for co-infections??

How about a doxycycline increase and adding Zithromax or Biaxin to it? Ask your doctor okay.

------------------
Lyme Disease Help
http://www.wildcondor.com


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Lymetoo
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quote:
Originally posted by TX Lyme Mom:

What I can tell you, however, is that LymeToo's answer appears incorrect to me. Minocycline (Minocin) is an advanced form of doxycycline, so it doesn't make sense to combine them both. Either she misread your statement, or else I'm misreading her response.



You know, TXLM....after I posted that, I wondered "Isn't doxy very similar to mino???" OK....forget what I said.

amy....finding an LLMD does not mean it has to be expensive...nor does it mean that you would have to have an IV.

The best bet would be to print out a copy of Dr B's guidelines for your dr.

Dr. Joseph J. Burrascano's Guidelines http://www.ilads.org/burrascano_1102.htm


------------------
oops!
Lymetutu


Posts: 96239 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
TX Lyme Mom
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amyb,
There are some very patient-friendly LLMDs in your state who are conscious of the cost and try to keep costs to a bare minimum. However, proper testing first, prior to starting treatment, is very important.

If you absolutely cannot afford the testing, and can prove that you are truly indigent, then there are usually ways which can be found to obtain proper laboratory testing for you at a reduced cost.

Post a request for a referral to an LLMD in our special Forum for Seeking A Doctor and explain your economic situation. I'm confident that folks here can help you find an LLMD who won't bankrupt you.

Besides, you are likely to save $$ in the long run because you won't be wasting valuable time &/or $$ with a do-it-yourself hit-or-miss approach, by trying to help your PCP try to figure out how to prescribe for you.

The more complex your case is, the more you need an experienced LLMD, preferably one who is a member of ILADS. Some of them do have rather long waiting lists, though, so perhaps what you could do in the meantime, while waiting for an opening, is to find out what testing this doctor would request and ask your PCP to order the lab tests for you.

By doing so, you would have a better "baseline" for later. It's too bad that you started antibiotic treatment already without having been tested. Later, you might also need to be tested for the Co-infections, but if your economic situation is dire, then that can wait until later, after you've been tested for Borrelia first.

I'm suggesting this because I did a search of your previous posts and discovered that you had not been tested, or if so, then this fact was not clearly stated in your other post.


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liz28
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I take omnicef in place of rocephin, and it seems to work just as well. I also found that minocycline was the best of all abx, but the side effects were too intense.

The minocycline seemed like it would have done the job on its own if I'd been able to continue taking it. The omnicef needs other abx to back it up (in my case, flagyl and zithromax), and even then, is not enough without a lot of herbs and supplements. But for me, it was the only alternative to rocephin--ceftin just didn't cut it.


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TX Lyme Mom
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amyb,
Is there any chance that you might qualify for the patient assistant (needy meds) program? It's federally mandated, you know, so all drug companies are required to participate. However, each drug company drafts its own application forms, and some require various documents for proof of income status, but others do not.

You might want to look into it. What you do is first do a search to find out what drug company makes the antibiotic you need and then next you look at their website and hunt for information on "patient assistance", which is the term used for these programs.

After that, you just download the info and ask your doctor to sign off on it. You might be able to qualify for some antibiotics but not for others, depending on how each drug company interprets the guidelines, but usually if you are low income, you can get almost whatever you need this way.

Even some LLMDs are not totally familiar with these programs, so it takes a lot of resourcefulness on the patient's part to come up with the request forms. It's well worth the trouble to look into it, because often the cheapest antibiotics just don't cut it for advanced LD, unfortunately.

PS - I also forgot to mention earlier that a lot of folks think they are allergic to penicillin, but only about 20% are proven to have a true penicillin allergy when tested. Probably, a lot of what folks thought was an allergic reaction to penicillin was really an unrecognized Herxheimer. However, considering the life-threatening severity of a true penicillin allergic reaction, this is something you want to be careful with.

For years, we had avoided penicillin because of a reaction to penicillin, but now it's no longer a problem we've found, after being careful to start out with a very low trial dose at first and keep Benadryl on hand and be ready to head to the ER at the first sign of any sign of trouble breathing or chest tightness or slight wheezing because those symptoms can get out of control quickly. It would be better to be safe than sorry.

I've heard of folks actually driving to a hospital parking lot and sitting outside in the car for an hour or so, while swallowing a trial dose of a suspicious medication, just in case of an unexpected bad reaction. They always ended up driving themselves back home afterwards, without ever having to enter the ER. Be sure someone goes with you though who can send for help, just in case you get into sudden trouble and aren't able to make it out of the car and into the ER by yourself.

[This message has been edited by TX Lyme Mom (edited 23 April 2004).]


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amyb
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TX Lyme Mom,

Thank you....i was tested in 1995. that was positive. i was treat 3 weeks after test...thats when the hosiptal decided to call me..see they said it was a spider bite and put me on steroids for 2 weeks...i just got more and more sick so I called the hospital and they were like oh yeah your test was positive..anyway 6 months of biaxin after that..i was fine until this SEPT and then symptoms of lyme came back..so that is why i did not get tested this time..i have a doctor after 6 months of lookin that will treat me on symptoms..i am going to call a LLMD i got a list for one in PA..should i test or NOT test for co-infections yet??? i have been on and off abx since Sept.

amy


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TX Lyme Mom
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amyb,
YOu were posting while I was posting. Thus, I'll have to come back later to try to answer your last question, unless someone else beats me to the draw, because I'm being interrupted right now and won't be back at the computer for a while.

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Lymetoo
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quote:
Originally posted by amyb:
should i test or NOT test for co-infections yet??? i have been on and off abx since Sept.



It would be best to test for babesiosis and bartonella for sure. you've probably had enough Biaxin to kill out the ehrlichia if you had it.

If you have babs, you need to treat it early in your treatment program. Otherwise you cannot get well from the Lyme.

MANY people test negative or borderline for babesiosis, but it's wise to be treated anyway! If you respond with a herx, then you know you have it! It happened to me and I'm still fighting the babs after 3+ yrs.

------------------
oops!
Lymetutu


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skeezixdoc
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someone mentioned Rocephin. You said you're allergic to Amoxicillin I think. If you get a real bad reaction I would steer clear of Rocephin, there's a 10-15% chance of being allergic to Rocephin if you're allergic to penicillins.
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amyb
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skeezixdoc

thanks for the heads up...the last thing i need is an allergic reaction on top of everything else.

amy


Posts: 362 | From west chester, pa | Registered: Apr 2004  |  IP: Logged | Report this post to a Moderator
   

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