Was dx with lyme a month or so ago, went to see a very well known llmd in nyc. Their practice is very respected and I heard great things about them...but very very expensive. So I saw a "lyme friendly" doc today in my state, someone who had really good patient reviews. She said she didnt agree with the amt of antibiotics im on. 100 mg doxy 3x a day, and 500 mg zithro once a day.
She said the zithro can cause esophageal ulcers and heart problems. my blood pressure has been high the last two times ive had it checked.....140/90 I've never had high blood pressure in my life until now.
Im confused now, because the doc i saw today wants to lower my doxy dose, and take me off zithro in two weeks. Then start IV rocephin, she said if the oral antibiotics havent made a huge difference in six weeks, they prob won't and i need IV's.
This is totally not what the LLMD told me. Also the LLMD never said there could be serious complications from long term oral antibiotic use.
now what? any opinions/advice?
Posted by kidsgotlyme (Member # 23691) on :
The dosages that the LLMD have you on are not extremely high doses for a case of chronic lyme.
My daughter is on more doxy than you. There is always a risk associated with taking long term antibiotic usage.
You need to be on a really good probiotic, and a good liver protector. Support measures have to be in place when dealing with the high dosages of antibiotics that are required to combat this disease. You may need a medication for BP.
In the end, it has to be your decision as to which doctor you are more comfortable with. Have you seen the documentary entitled "Under Our Skin?" If not, then I would highly suggest that you get it.
I'm sure that someone else will come along with more info. This is an illness that required lots of self-study.
Posted by Carol in PA (Member # 5338) on :
quote:Originally posted by Jennifer70: my blood pressure has been high the last two times ive had it checked.....140/90 I've never had high blood pressure in my life until now.
It is possible that your blood pressure was high when it was measured at the doctor's office due to stress.
This is sometimes called "white coat syndrome" and I was surprised to find that I had it.
Next time you go, ask the nurse to check it again at the end of the visit, and compare that to the first measurement.
Also, many drugstores have blood pressure machines, and you can check your pressure when you're out and about.
Carol
Posted by BoxerMom (Member # 25251) on :
Uh-oh. Your Lyme friendly doc is going by the book - the book that has no chance of getting you well! She is misinformed about Lyme. I have been on oral abx for almost 3 years, and I am substantially better.
Did she mention treating co-infections? You must treat co-infections to recover.
And IV Rocephin is not a miracle. Some people need it and improve on it, but it shouldn't be an automatic "go to" after just six weeks of treatment. And IV Rocephin is much more risky than oral abx.
These infections will cause more damage than a closely monitored abx protocol. Sure, there are risks in any therapy, but untreated or undertreated Lyme is way, way riskier than abx!
I would go back to that LLMD if I were you.
Posted by Lymeorsomething (Member # 16359) on :
So she says in the same breath that you're on too many orals (you're not) yet she has no problem putting you on IV. That doesn't make too much sense.
Orals work too. They just have to be high enough and diverse enough to kill all lyme forms.
I'm not sure either doc is that good. I did not like the well-known LLMD that I saw in NYC.
Good luck.
Posted by lululymemom (Member # 26405) on :
I know first hand that Zith can cause heart problems. If there is any concern I would not use this drug.
Posted by chiquita incognita (Member # 30381) on :
I have read a few drug studies on www.pubmed and attended physician's lectures who have talked about this topic. And read lots of articles. Based on what I myself found ( major discrepancy between AMerican drug studies and European ones) plus the information from several docs and articles I have read...I have come to realize that unfortunately, drug side effects are under-reported, on purpose too.
I say this because....
One drug (not for lyme, no worries) I researched on www.pubmed.gov was said to cause leukemia as "side effect". About 4 American studies said what a fine drug it is and that the "occasional" side effect of leukemia was not a worry. European studies were vociferous, and I am quoting word for word, not using words of my own:
"This is an extremely dangerous drug. USe it only as a last resort, when operations are contra-indicated. THe side effects of leukemia are widely under-reported". I had looked up 6 European studies from Italy, England and Germany. ALl concurred.
Why the discrepancy between American and European reports?
A nurse practitioner told me that (her exact words) "many American drug studies are done in the pockets of the pharmaceutical companies".
While people with more experience than I have with abx for lyme may be right that higher dosages are indicated, I would suggest that it's extremely prudent to be cautious and skeptical about drug side effects. If the lyme-friendly doc was concerned about esophageal cancer, she is trying to protect you.
Have you considered doing herbal antibiotic therapy alongside mainstream? Then the dosage of the meds could be cut down. YOu'd need expert guidance, someone who knows exactly how to target the correct co-infections involved with just the right herb, and how to adjust dosages, etc. My LLMD is well known and is such a person FYI.
Posted by Jennifer70 (Member # 30280) on :
Thanks everyone. I'm just going to pray about which way to go, and do some research on IV rocephin, havent researched it much yet because I really didn't think I'd be going that route. I will try taking my bp at the drug store and see if it was just nerves.
I mentioned to the lyme friendly doc that the reason I was on both zithro and doxy (she didnt understand why both?) was because of co-infections. She didnt get it, I tested negative for co-infections through igenex. I just explained that since i've had it over five years, they might not show up in my bloodwork.
The thing is, the lyme friendly infectious disease specialist is so inexpensive to go to. Im a little taken aback at what LLMD's charge.
I understand they have to pay their bills...but it seems so unfair to people suffering, many that cant work and have no insurance. Im a little angry about it.
Chiquita, not sure where u live but can u send me the name of your doctor? Maybe if they are close enough to where i live i can go to them.
Posted by lululymemom (Member # 26405) on :
It does seem very unfair, that many of those who got better had access to many resources including financial. They were able to see some of the best doctors and pay for some of the best treatments.
You have every right to be angry about it, there is no fairness in that. If doctors truly cared about people suffering they would try to make it more affordable.
Posted by seibertneurolyme (Member # 6416) on :
jennifer,
If the doc thinks just because the IGeneX test did not show coinfections that you don't have them then she is not as experienced as she needs to be.
The odds are that you do have at least one coinfection and it could easily be a strain of babesia or bartonella that is not tested for.
My personal opinion is that the easiest way to prove whether or not you have some strain of bart or BLO is to do a Clongen bloodslide -- at only $100 it is worth the cost. The lab may not be able to tell you the strain of bacteria but if they see it then you know to treat for it. All strains of bart are treated with the same meds -- but only 2 of twentysome strains can be tested for by most labs.
Bea Seibert
Posted by sutherngrl (Member # 16270) on :
If the doc says you should feel better in just 6 weeks, that is a red flag. Many do not feel better for months to years of treatment.
I did not see improvement until a year and a half of treatment. 6 weeks is nothing regarding lyme treatment.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Lymeorsomething: So she says in the same breath that you're on too many orals (you're not) yet she has no problem putting you on IV. That doesn't make too much sense.
Orals work too. They just have to be high enough and diverse enough to kill all lyme forms.
I'm not sure either doc is that good. I did not like the well-known LLMD that I saw in NYC.