posted
I went and saw the somewhat literate lyme doc today for my second visit.
I am currently on 2 bicillin shots weekly (done on same day)
1st off... doctor seemed surprised almost shocked that I'm not feeling better.... that I actually felt worse last week. I stopped explaining all of my symptoms that were worse, and even minimized some... weird vibe from him.
My mom was present for this visit and thought the same about his reaction.
2nd thing of issue... I brought up co-infections. I wanted to know about diagnosing and treating coinfections. He stated that the bicillin being a penicillin would take care of most of them.
So, then I asked what about bart and babs? He said what? I said what about bartonella like organisms and babesiosa.
Oh, he says. Well Lets keep going with the bicillin and if it doesn't clear things or some major symptom of those come up then we can address it. You seem pretty knowledable, he says.
So, I'm not so happy...I should have brought a list of symptoms I guess for him... because I have almost every one on the bart lists, and many for babs.
A couple of the things I had discussed with him about symptoms this last week, which made me remember about having for at least the last 13 years was pain on the soles of my feet in the am (was extreme in previous years, but last week started again but was mild) and in previous years extreme air hunger (yawning).
I thought those would have been clues to him of some of symptoms of bart/babs... ( I had already given a 3 page typed list of sypmtoms categorized for the guy) Which had lots of symptoms on it for both.
I'm frustrated.... Should I be????
The positive with this doc is that my insurance covers him. But, he is only willing to treat even the lyme with bicillin.... no other meds in combo... I asked.
On a positive note for the visit today, I picked my mom up 1/3 of the way there. So she drove 4 out of the 6 hours. Which made the trip alot easier. And the doc gave us next weeks bicillin to inject at home.
My question is should I ride this out for awhile since my insurance covers this doctor? Or should I be looking for a better doc? There is a better doc an hour closer to me than this guy, but he doesn't take insurance....
I'm just wondering if I am doing good by just getting the bicillin shots.... am I causing more harm than good?
What happens if in 6 months I change docs and go for a different protocol... will having been on just bicillin make it more difficult to treat?
I know no one here is a doc.... but, my doc is not all that knowledgable (or at least appears that way) so I would appreciate any and all advise/comments
-------------------- 10/10 EIA 1.4+, 41 (IGG), 23 (IGM) Bitten over 20 years ago. Currently not treating, looking for a Dr who will work with my insurance lol.
More muscular, cognitive, nerve issues than joints. Facial droop and blurred vision. Posts: 323 | From Michigan | Registered: Apr 2011
| IP: Logged |
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Of course I am not a doctor, but I have never heard of just treating with bicillin shots. That doesn't sound right to me.
If the other doctor is more knowledgable, I would go to him. You might be able to file your insurance and get at least some of it reinbursed after each appt. You might also be able to space appts out further so as to save money. It is something to check in to.
Posts: 4035 | From Mississippi | Registered: Jul 2008
| IP: Logged |
chiquita incognita
Unregistered
posted
I don't have a "pat" answer since I am taking herbs and not antibiotics. So I can't suggest which doc would be better.
Just as consideration though, if it does end up that you think the other doc would be more helpful, here is something to weigh in the balance:
Health is wealth.
Again no advice given here, only something to weigh in the balance before you make your own decision.
And does it all have to be black and white? So you necessarily have to switch docs completley? Maybe the local/better/more expensive doc can be consulted for a second opinion, on a one-time basis? Or even occasionally for ongoing, intermittent advice, and to confer with the doc who is paid by your insurance....only an idea...
Then you can decide whether or not it's wise to switch.
Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
You need to be able to truthfully discuss your symptoms with your doctor and not minimize them. This is an important part of treatment.
Regarding co-infections, this doctor told you that Bicillin shots "would take care of most of them." This is not true.
In my opinion, it is better to see the more knowledgeable doctor as soon as possible. Yes it may be more expensive, but you will be getting better treatment earlier which will save you money in the long run.
Posts: 4681 | Registered: Oct 2000
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Laura, by just being on the bicillin, you will not get rid of the bart and babs symptoms. So, decide how much they bother you. If they are major, then you want to get to a doc who treats these diseases.
Since this guy really is not a lyme doc, I would start looking for a better doc. Be sure the guy you are thinking of will treat for coinfections and will use high dose combos of meds to kill the lyme. At least find out how long a wait there is to get an appt with him.
The longer you delay getting to a great lyme doc, the longer you will be treating this disease. That's just how it is. I wasted 2 years with a lesser doc who took insurance. He cost me practically nothing, but here I was continually taking his meds for 2 years, and I had gotten to a certain level of wellness and that was it. I was stuck. I could never stop the meds without getting as sick as I was at the start.
That's because he didn't treat coinfections and didn't use more than one med for lyme. He was just like your current doctor.
If you don't treat all coinfections, you can never get rid of lyme either.
Also, you begin to have more and more problems with yeast infections in your mouth and intestines the longer you are on the lyme antibiotics because they destroy the normal flora in your gut. Then, you have to treat for both lyme and yeast and be extremely strict on your diet from then on out. Not fun! No sugar, no bread, no pasta, nothing made from flour, no fruit, no cereal, no rice, no potatoes, etc. Just eating meat and non-starchy vegetables. No life!
If I had it to do over again, I would go directly to the best lyme doctor around and get rid of this disease as quickly as possible. I feel I wasted 2 years with my "one med no cos" doc.
According to your account, the only thing in your current doc's favor is that he is cheap. Of course it is very frustrating to experience what you experienced at this appointment. Who wants to be talking with a doc who says, "What?" when you ask about bart and babs and can't recognize that you have these diseases when it is staring him in the face.
My lyme doc who was like yours believed coinfections were rare, as in they are never a problem. I found that out when I switched doctors. My new doc told me this! He said he had tried to tell my old doc that this wasn't right, but the guy just would not listen!
You are not causing more harm than good by getting just the bicillin shots. However, after a number of months of this treatment, you are just treading water. You will not get better and better on this one med. You will get some improvement and then stop, just like I did on my one med.
When you switch to a better doc, having been on just bicillin will not make your lyme more difficult to treat.
When I left my "one med no cos" doc and switched to the doc who cured me, he asked about my prior treatment. When I told him I had just been on this one med for about 2 years, he said, "Congratuations. You have succeeded in converting all of your lyme into the cyst form."
So, that goes for you also.
Then, my new, very good lyme doc tested me through Igenex for all coinfections (ehrlichia, babs, and bart) and I found out I had babs and bart. At that first appt, he also had me stop my one med for one week. That was to get the lyme out of the cyst form. Then, he had me take 2 lyme meds--one that kills the cyst form (flagyl, in my case) and one that kills the spirochete.
When I took these 2 meds, I got my first herx. The lyme had no way to escape the medication. If it tried to go into the cyst form, the flagyl killed it, if it stayed in the spirochete form, the other med killed it. That's how I got rid of lyme in 2 months time!
Over the 7 years I have been helping people find the good lyme docs and get rid of their disease, I have concluded that the el cheapo way very, very rarely works. To get rid of this disease, you have to pay a doc with a lot of expertise. Then, it won't take long at all.
As long as you muck around with these semi-literate lyme docs, you will just make a little progress. Some folks don't leave these cheap, insurance-taking doctors until they begin to get worse. It can and does happen. Just wanted to let you know that.
So, do you want to be well now or later? That is really the question you need to answer. You already know this guy can't do it for you. If there is any way possible, go to a very good lyme doctor.
The doc is the key to getting rid of this disease. Can't emphasize that enough. The doc is the key.
In April, it was 6 years since I completed my lyme treatment and I am still symptom free, enjoying my life. I have the same life I had before lyme disease.
I went undiagnosed for at least 10 years. I finally got so sick that lyme stole 5 years of my life--I had no life those last 5 years.
I and all my friends got well going to doctors who follow the Burrascano lyme treatment guidelines. So, I suggest you find out if the other doc you are considering follows these guidelines.
Here are a few points from Burrascano:
You must attack both the regular and cyst (or other) form of lyme simultaneously--requires 2 different antibiotics to do so.
You must test the patient for all co-infections and other physical ailments (thyroid, etc.) and treat everything the person has.
You must treat all co-infections (including mycoplasma, etc.) or the patient will not get well.
You must use Igenex for most of these tests--they are a tick-borne disease speciality lab in Calif.
You must use very high doses of antibiotics to kill the diseases (batericidal doses).
You must give the patient supplements, probiotics, herbs such as artimesinin if babs is suspected, and require adherence to rules such as low carb diet, no alcohol, no smoking, rest, and exercise as the patient is able to do it.
You must treat at least 2 months after all symptoms have disappeared (if sick at least 1 year).
These are just a few of the important points you will see in the guidelines. You want a doc who does EVERYTHING Burrascano says to do. He treated lyme for over 25 years, and compiled what he learned so that other docs could benefit from it. Read it in his Guidelines.
I suggest you call the lyme support groups in your state or nearby states (see Support Groups on left side of page) and ask them about the doctor you are considering. Ask if he follows Burrascano, for example. Ask if he has cured a number of people.
If they ask what you mean when you say you want a doc who follows Burrascano, say "I want a doc who will treat me with high dose combinations of antibiotics like what Burrascano recommends, and one who will test me through Igenex for all coinfections, treat me for cos based on a clinical diagnosis (regardless of the coinfection test results), gives the Burrascano recommended supplements, and knows how to treat intestinal yeast."
Getting rid of this disease is a lot more than taking meds. It is also taking supplements, eating the right diet, and doing the Burrascano recommended exercise program (1 hour of weight lifting every other day).
After a few months of treatment by my Burrascano doc, he told me I would NEVER get well unless I did the required exercise program. I was shocked. The 2 Burrascano type docs I recommend to people tell that to all their patients.
The weightlifting drives the meds deeper into your muscles and other parts of the body where lyme likes to hang out. It also boosts your immune system. All exercise lowers your immune system at first, so all exercise is not equal.
There is much to learn. Study the guidelines and decide for yourself what you believe about what it takes to get rid of lyme disease.
I wish you the best.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
posted
Maybe the local/better/more expensive doc can be consulted for a second opinion, on a one-time basis?
Good point CI
TF, Thanks for such a thoughtful reply. I have been reading that link to Dr. B's guidelines... and finally got a new printer hooked up last night and printed it.
I had gotten the name of this doc from the michigan lyme association... but, was told that he was new to lyme... that they only knew of him treating a few patients....but knew that he was the only one in the state that took my insurance. And we figured it was worth trying. So now I have tried.... and both times I have seen him am not impressed.
I appreciate you sharing your experiences.
Not fun! No sugar, no bread, no pasta, nothing made from flour, no fruit, no cereal, no rice, no potatoes, etc. Just eating meat and non-starchy vegetables. No life! IS NOT SOMETHING THAT I WANT TO HAVE TO DEAL WITH!
I had read about the excercise... and needing it to be weight lifting... no aerobic exercise. But, hadn't understood that the weight lifting helped drive the medication into the muscles where it needs to be.
I found it very useful to have it spelled out to me as to what exactly to ask for in a dr when you said: "I want a doc who will treat me with high dose combinations of antibiotics like what Burrascano recommends, and one who will test me through Igenex for all coinfections, treat me for cos based on a clinical diagnosis (regardless of the coinfection test results), gives the Burrascano recommended supplements, and knows how to treat intestinal yeast."
This month is the month where I can change insurance plans... I am trying to see if a different type might reimburse for some expenses. But, it seems like I am going to have to bite the bullet and make an appointment with another doc
-------------------- 10/10 EIA 1.4+, 41 (IGG), 23 (IGM) Bitten over 20 years ago. Currently not treating, looking for a Dr who will work with my insurance lol.
More muscular, cognitive, nerve issues than joints. Facial droop and blurred vision. Posts: 323 | From Michigan | Registered: Apr 2011
| IP: Logged |
posted
Laura, If you can switch insurance plans try to go with a PPO. Unlike most HMO's they allow you to see docs outside of their preferred network. Keep in mind the benefits will typically be reduced somewhat for an out of network provider. In my case the insurance pays 70% for an out of network doc and does have an out of pocket maximum.
So they pay 70% until the out of pocket maximum has been reached then cover at 100%. Make sure you research your available plans so you don't get stuck with in network coverage only.
You can also check your existing policy and may find they do in fact cover you for the other doc. Many good lyme docs do not take insurance so they are not bound by the too often ridiculous policies or treatment guidelines.
My current LLMD does not take insurance but gives me an itemized bill to send for reimbursement which is then paid at the out of network rate. I was going to an LLMD that took insurance and was fully aware of coinfections. While this was convenient I soon found out that while he would give me the appropriate (correct) abx for what we were treating, it was much lower doses than burrascano recommends.
On a number of occasions he asked if the insurance company was questioning the continuing antibiotics. I understood why he would ask and never gave it much thought until I spoke to him about Babs treatment. When he looked at me and said that Babs was hard to treat then dropped the subject it became clear he was afraid of the insurance company as the typical meds for this are extremely expensive.
This is truly a shame because this doc understands lyme and co's and is genuinely concerned about his patients. Now fast forward and my current LLMD jumped on the Babs right from the start. In her mind you will just go around in circles until you get Babs under control. We are also hitting lyme at the same time.
Now if you read the Burrascano guidelines it says you must hit Bart first (I am also blessed with that mess) and while my current doc knows him personally and actually studied under him she insists the Babs be taken care of first.
You will find folks on here who prefer the low dose abx and have cleared the bugs using this method. You will also find that some have cleared everything going the natural route with herbs and such. At this point as you begin your journey you must decide what treatment you are seeking, lower doses for longer, massive doses for hopefully a shorter time frame, the natural route, or a combination.
Once that is clear in your mind then you need to find that appropriate LLMD or naturalist. Insurance coverage is a bonus but more importantly you absolutely need to find someone that treats all coninfections as well as lyme and will keep an eye on other issues such as yeast as mentioned in the other posts.
I am not trying to confuse you, just make you aware of the options. You need to feel comfortable with your particular treament before you can get better as a positive hopefull attitude goes quite a long way.
Good Luck to you and hang in there.
-------------------- If you play at the beach, expect to get some sand in your shorts Posts: 223 | From central pa | Registered: May 2010
| IP: Logged |
-------------------- 10/10 EIA 1.4+, 41 (IGG), 23 (IGM) Bitten over 20 years ago. Currently not treating, looking for a Dr who will work with my insurance lol.
More muscular, cognitive, nerve issues than joints. Facial droop and blurred vision. Posts: 323 | From Michigan | Registered: Apr 2011
| IP: Logged |
posted
I've posted in seeking a doc. for information on Dr L in MI. Also wanting info on Dr. M in Keego Harbor
-------------------- 10/10 EIA 1.4+, 41 (IGG), 23 (IGM) Bitten over 20 years ago. Currently not treating, looking for a Dr who will work with my insurance lol.
More muscular, cognitive, nerve issues than joints. Facial droop and blurred vision. Posts: 323 | From Michigan | Registered: Apr 2011
| IP: Logged |
posted
From my experience there are really no good llmd in MI. You may want to look into going out of state. This is just my experience.
Posts: 323 | From Michigan | Registered: Sep 2006
| IP: Logged |
posted
Hey Laura I sent you info back on 4-21-11 about DrM in Keego Harbor, Dr L in Saginaw, and Dr B in Warren. I think you read this PM. But not so sure after reading this post.
Your doc you saw today was it one of these three?
-------------------- HERX is a Four Letter Word! Posts: 716 | From If you're going through hell, keep going......Winston Churchill | Registered: Apr 2007
| IP: Logged |
posted
Yes, I read your PM. I was going to go to Dr. M in Keego Harbor but he stopped taking my insurance.
So I went a different route. The doc I saw is not any of those he was new to treating lyme, but took my insurance...
Now although I may continue with this dr in the interim... I am looking at the others now.
I will PM you.
-------------------- 10/10 EIA 1.4+, 41 (IGG), 23 (IGM) Bitten over 20 years ago. Currently not treating, looking for a Dr who will work with my insurance lol.
More muscular, cognitive, nerve issues than joints. Facial droop and blurred vision. Posts: 323 | From Michigan | Registered: Apr 2011
| IP: Logged |
I have been on only one abx, omnicef for five months by a well known LLMD in NYC. He added zithromax for two months and stopped it when I had bad hearing issues. He gave me rifampin but I had a horrible reaction after the second pill and he stopped it immediately.
When he told me to take a break from all abx for five days to get the rifampin and die off out of system I called them back the next week. Althought it was three weeks to feel somewhat normal again after the reaction, he said to stay on just omnicef for now since I was feeling so much better.
Dr R told me that omnicef is an excellent abx for killing lyme and preventing it from replicating and changing into cyst form. I see him again in two weeks and wondering if I am going on a second abx ever again. I am negative for co infections through igenex so unsure about those either.
I take many natural supps and b12 injections all of which seem to be helping my neuro lyme a lot but I still have leg muscle and joint pain only when I try to get up or move around..not laying still?
Looks like we are in the same boat right now. My doc does not take insurance is crazy expensive (now 1000 first visit and 550 for every visit after) and all he does is ask me if each symptom I had feels any better at each visit.
I am as confused as you are at this point.I started just taking my life back and going out each day, eating a bit more normally and was feeling much better. I still get fatigued in the afternoon to the point where I need to sleep. I am not sure what to do anymore either?
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
| IP: Logged |
posted
annier I have many nutrient deficiencies. I am also on B-12 shots... and supplements
From what I have learned only being on one antibiotic won't kill this disease.
I am looking for a new doctor. But, I can't afford someone that expensive either.
I'm new to this, so not a great one to give advise... but good luck! I know the frustration, the fatigue, the brain fog, and many many more symptoms
hugs
-------------------- 10/10 EIA 1.4+, 41 (IGG), 23 (IGM) Bitten over 20 years ago. Currently not treating, looking for a Dr who will work with my insurance lol.
More muscular, cognitive, nerve issues than joints. Facial droop and blurred vision. Posts: 323 | From Michigan | Registered: Apr 2011
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[confused]](graemlins/confused.gif)
![[Smile]](smile.gif)
Printer-friendly view of this topic