Hi everyone...I have tested serum positive for lyme and over 10 coinfections including babesia, HHV6, epstein barr, RMSF and ehrlichia. My LLMD also suspects I have bart because of major neuro issues and streaks/rashes that come and go that look like "classic bart" to him. My question is this-with so many coinfections, what do I hit on first? Is there a kind of "rule" with these illnesses that you should treat one particular coinfection first, or do you just hit on whatever?
My LLMD is thinking that perhaps we should hit bart when I start IV abx for lyme which will be in about 3 weeks..He is thinking bart because my neuro issues are so severe. I have taken rifampin before though and it gave me lots of side effects but I had no real diminishment of symptoms...Im just so confused as to how to proceed and was looking for any guidance...Thanks in advance. Jess.
Posted by TF (Member # 14183) on :
Generally, the lyme doctors start out by treating lyme and the coinfection that is bothering you the worst.
Some start out treating lyme, babs, and bart all at once.
Many would put you on doxy in the beginning as it treats ehrlichia and lyme. Plus they would add meds for the worst coinfection.
Actually, you should not need guidance from fellow patients. Your lyme doctor should be determining the treatment plan.
Posted by jessicabooklover (Member # 39427) on :
TF-...I am looking for people's imput because I think other's experiences are valuable and help me make my decisions. I trust my LLMD but he also is a but baffled as to how to proceed and we work in collaboration, so it is important for me to do my own investigation. Thanks. Jess.
Posted by TF (Member # 14183) on :
If your doctor is a bit baffled, that is not a good sign.
You want a doctor who has had many, many cases like yours and knows exactly how to proceed. The patient should not be making the treatment decisions since the patient is not a lyme doctor.
The doctor's expertise is the key to getting rid of this horrendous disease.
It is not pleasant to tell you this, but it is true. So, if you have not done so already, it is time to start looking for a much better doctor.
Posted by Garden (Member # 31671) on :
I have to echo TF: your doctor should not be confused.
When I left my last practioner - who meant very, very well, and knew more than many - it was because I felt like I was directing the treatment. I seriously thought about traveling to an ILADS conference so I could tell her what I thought my next steps should be.
It is much, much better to work with someone who actually knows what they're doing.
Posted by jessicabooklover (Member # 39427) on :
My LLMD knows what he is doing it's just that I simply don't respond to meds the way the vast majority of his patients have, and it is baffling to him. To be honest, I am friends with a former LLMD who was once president of ILADS and even he is puzzled at my case. It is the most complex and involved that he has come across as well.
I think we need to be our own advocates and such with this illness. One of my dearest friends always says "we have to be our own drs" in some ways with this illness and I agree. Perhaps we just have different approaches but I cannot rely on any dr to "know all" in a case like mine. Hence, my appreciation for a site like this where I can gather info and others' experiences.
I appreciate the advice, Garden and TF. I hope for a healthy future soon, whether it be with this llmd or another. Jess.
Posted by Catgirl (Member # 31149) on :
If your doc is who I think it is (you posted positively on another post), then I used to see him. Although he is very nice and knowledgeable, my gut told me to leave him, even though some people really like him. Although I'm grateful for his treatment (got me to a certain point) I am glad I moved on. I know I made the right decision. That said, my doc thinks highly of him.
I know someone who absolutely loved your doc until she eventually realized that somewhere along the line, she was slowly deteriorating. She eventually moved on and was glad she did.
I've had several lyme docs. Whenever I switched docs, I tried not to bad mouth the last doc. Each time I switched docs, the next doc found something else. Looking back, I made improvement with every doc I saw.
I understand why you are looking for answers. I'm always looking for them too. Respectfully, maybe it's time to consider finding someone new with a fresh perspective.
Posted by jessicabooklover (Member # 39427) on :
catgirl, I will PM you about my doc and see if we are talking about the same person. Thanks. Jess.
Posted by Ellen101 (Member # 35432) on :
I know for myself I need a doctor that I feel I can have some "conversation" with about my treatment plan. My LLNP has frequently asked my opinion as to how I feel about doing this vs that etc. She has asked me what my most bothersome symptom is in order to help guide my treatment.
While I feel yes the doctor needs to know how to proceed there needs to be an ongoing conversation between the doctor and patient in order to come up with the best treatment plan.
At times she has suggested a protocol that I either did not feel comfortable in doing or had other reasons as to why I wanted to stay away from a particular med. She has always respected my opinion/decisions and I feel that is important as well.
Posted by jessicabooklover (Member # 39427) on :
Ellen-THANK YOU! I could not agree more. I like my dr precisely because he doesn't pretend to have all the ansers but at the same time is tireless in his search to try to help me, and he makes me feel like a collaborator in my treatment. Jess.
Posted by lax mom (Member # 38743) on :
I have had both type of LLMDs: an empathic collaborator and a Lyme expert drill sargeant.
In my case, I needed a collaborator because my body doesn't respond to meds/supps normally. I am soooo sensitive, I have to take baby doses of meds.
I am grateful for the expertise of both of them.
Each one teased out different diagnoses and different pieces of the puzzle. Now, I am able to take those jumbled up puzzle pieces to a Lyme practitioner who is a combination of the 2 types of Drs...hopefully, I will start making progress.
Posted by jessicabooklover (Member # 39427) on :
Lax mom-I am really sensitive to meds too, and my llmd understands that. He is incredibly smart and empathetic. I feel lucky to have him. We had a few issues of miscommunication in the beginning and we worked it out and now we have a really great collaborative relationship. I hope we both make progress soon . Jess.
Posted by mlg (Member # 35383) on :
I agree with you Jess. I think there needs to be some collaboration. One of my LLMD's was ranked by many as #1 in my area, with high regards, but I was a difficult case. And it seems that they are just starting to understand Parasites such as Proto (FL1953) and how to treat. And that perhaps they need to treat parasites first and then co-infection or lyme. And sometimes you need input from people that have gotten better. But if you feel and see a deterioration then you need a second opinion.
Posted by Kudzuslipper (Member # 31915) on :
Jess, how long have you been treating? Was there a medication that you improved on? Perhaps that can give you a clue as what to go after first this time around?
Posted by jessicabooklover (Member # 39427) on :
Hi kudzu-well, I dont' count the treatment that I had before my current LLMD because it was so truncated and inadequate, so I would say around 11 months. However, I have not had consistent treatment for all that time because of the fact that I developed a life threatening case of c diff in the spring and thus was off all lyme meds for many months.
I saw my LLMD and we had a long talk and the plan is to put me on IV abx in a few weeks once my weight goes up to 85 lbs or more. Thanks for all the support, btw. You have been really gracious to me, both on the board and in PMs and it is appreciated. Jess.
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. Jess.