Hello everyone, I am new to this website but I’ve been suffering with lyme disease for the last three years. My CD 57 number was 33. My question today is whether or not anyone else has been suffering from boils, abscesses or carbuncles? The boils and carbuncles didn’t really alarm me when they first started. But since I started a low dose long-term antibiotic therapy I have been plagued with large abscesses. Is this just me, or is anyone else out there having these issues? Any thoughts would be appreciated. Thank you so much for your time.
I am sorry to hear what you are going through with the abscesses and boils. I have not had any of those things. Do you have any other side effects from abx? Has your doctor seen the abscesses and boils? I hope that they clear up for you and do not cause too much trouble. How long have you been taking abx? Did the boils show up immediately upon your taking them?
Dear Slmo,
I am not having many side effects with the current antibiotics that I am on. Just a general yucky feeling in my stomach and in my head. I currently do not have a Lyme literate general practitioner. He always sends me to the emergency room to have them taken care of. My new neurologist is extremely hard to get into see. When I called them about this situation they told me they could not give me any appointments sooner than the one I already had scheduled for November. I have been dealing with abscesses recently. The boils and carbuncles I had were during the beginning of my treatment two years ago. As far as how long I have been taking abx, on and off since my diagnosis. It started with a two-week course of doxycycline, and then a four week course of doxycycline, and then a month of intervenous ceftriaxone finishing on May 1, 2013. And then nothing until three months ago when I got my new neurologist. I could barely speak, stuttered and got stuck on words a lot, tipped over when I close my eyes, and have a funny gate in my walk. I had these things in the beginning when I was first diagnosed, they went away during my first rounds of aBX, The symptoms have come back slowly over the last year or so. And now that I’m back on antibiotics they are getting a lot better. I am on these antibiotics for a six-month course. With three months left of my treatment.
Thank you for your response, it is nice to finally talk to someone.
Thank you for the information. I did go on to the doctor referral site for Lyme literate doctors and was given three names of those closest to my area. On Monday I’m going to make a few calls and see what I can find out. And maybe make an appointment with one just to see what it’s like to have a doctor who is actually versed in my disease.
I am so sorry to hear that you have all of these other medical issues in addition to limes disease. I’m not that well medically versed, and I’m not sure what most of your issues are. But was wondering, are they all autoimmune diseases? And if so do you feel that they were all brought on by an original diagnosis of Lyme ? I find myself really struggling with is it part of my lime disease or is it something new.
Thank you for the reply and for sharing some of your story. I am sorry to hear that it is a struggle for you to get into specialists etc. I completely understand having to deal with that! Sounds like you have had a long journey with lyme and I am glad that you have abx which are making you feel better. It is a good thing that you do not have too many adverse affects...though I understand how miserable it is to feel crappy all the time. I have been pulsing abx for almost two years now. There is mild improvement but not enough for me to function normally. When I first started treatment I was like you- stuttering a lot, could not walk, vertigo. all those things have died down a little bit but I am still in a lot of pain and still cannot stand up straight. My lyme doc switches my protocol about every three months so it is a roller coaster ride dealing with this.
After the next three months of your treatment are you going to be reassessed for lyme such as with the CD57 test or an Igenex test? I hope that one of your doctors is willing to go the long haul with you/lyme...my lyme doc said it could take years of abx before I see improvement and so far she is right!
I am glad the doctor referral generated a few options for you. Please let us know if you find someone who can help. I found my lyme doc through a social worker who was on the referral list I got from the same generator. So even if you do not need a social worker or mental health person, if there is one on the list they might be able to tell you about a lyme doc in your area.
You mention struggling with the idea of whether you are having health issues because of lyme or something else. I completely understand that feeling and ask my GP all the time 'how do we know if something else is wrong' because she only focuses on my fibromyalgia diagnosis (lyme doc and GP are different and have different opinions). It is a frustrating ride to not be sure, but I think you are on the right track to find a lyme doc and start sifting through anything you are having trouble with. A good lyme doc will consider all possibilities as well as lyme.
I am not exactly sure what testing my new neurologist will ask for when my six months of this ABX are up. My infectious disease specialist asks for bloodwork every time I see him about every three months. I am just now getting to the point where my memory is a bit better. Before these anabiotic’s I had no short-term memory. Which made it very difficult to look into or research anything. But I have faith, he is the first doctor to prescribe me long-term anti-biotics. And stated, like your protocol, that I may have to switch antibiotics several times before this treatment is effective.
We are all on one long strange journey. At least we have each other.
Indeed, this is one long strange journey! I am glad we have each other as well, and always love to learn how my fellow lymies are doing, and what doctors say to do. So is your infectious disease specialist acknowledging lyme disease? My GP wants me to go to an ID specialist but I am afraid they will go by the IDSA guidelines and tell me I am crazy, that its all in my head and not lyme.
My doctor switches up my meds to try and attack the lyme from different angles with varying abx and varying intervals of when I take them....if your neurologist is aware of that method he is far ahead of many doctors! I can't say for sure if it is the best thing to do...but I don't think that anyone knows the best way to treat this. Especially because everybody is different. What kind of tests does your ID specialist do every couple of months?
Thank you for the insights, David. It is very tough to swallow that we may never know exactly what is going on. One of my doctors also told me once to not ask 'why' because sometimes there are no answers and it will just drive us crazy. At first I was annoyed with his advice because I still wanted to know what was going on...but over time I learned that he is right. We are all just doing the best we can to figure this out. Thank goodness for the open-minded doctors who do not shoot us down but rather try and learn the 'what is going on' as much as possibly can be done.
I’m not sure, I will have to look thru my files. Sorry for the long delay, I’ve been suffering from a bout of migraines, one after another after another. Finally coming out of the cycle .
I agree Freemanellis. A lyme literate doc takes some of the pressure off because they believe us and do not make us out to be crazy. I saw mine the other day and she reminded me to have hope and joy in life. I appreciate that our lyme docs are actually doing something to help us heal.
This is something I have seen work first hand for one young man who suffered terrible carbunkles. Though you may need antibiotics, and to use antibacterial soaps, this was 'the charm for him' Though they mention orange oil, he just started eating oranges, several a day. His mom told me the oranges had worked so well, he never got another!
The book, Today's Herbal Health by Louise Tenney suggests Black Walnut, hulls and leaves, or eucalyptus oil,HOWEVER, please know that I"m not a medical professional. I suggest you google these items with their properties and check with your Dr to make sure they will not interfere with his treatment or other conditions or meds!
I agree pharmacists can be very helpful dkel. I have built a relationship with mine and ask questions when needed to check on drug interactions. I am glad yours caught the connection with grapefruit!
Thank you for the info. I think oranges are a great place to start. I love oranges. So that’s a simple one. Even if it doesn’t work it’ll be delicious and I’ll get my vitamin C for the winter.
Michelle
SK said:
Hi Freemanellis,
This is something I have seen work first hand for one young man who suffered terrible carbunkles. Though you may need antibiotics, and to use antibacterial soaps, this was ‘the charm for him’ Though they mention orange oil, he just started eating oranges, several a day. His mom told me the oranges had worked so well, he never got another!
The book, Today’s Herbal Health by Louise Tenney suggests Black Walnut, hulls and leaves, or eucalyptus oil,HOWEVER, please know that I"m not a medical professional. I suggest you google these items with their properties and check with your Dr to make sure they will not interfere with his treatment or other conditions or meds!
BTW, the oil of the citrus is in the rind, here is how to make a citrus 'twist', They are showing lemon as this the standard bartenders 'twist', but few realize how good an orange twist is in a glass of iced tea or even a vodka martini! It's great in almost any beverage, and good source of the 'orange oil'. When you actually twist the rind, you will see, smell, and taste the sweetest part of citrus.