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Tested positive for Lyme and Lupus.
It seems I received a double whammy. I have suffered for too many years with joint pain, fatigue, edema andf other symptoms. I had Rheumatic Fever when I was 15. I am now 58. I have been to a cardiologist and discovered that I have High BP and a minor backwash in a heart valve. My edema was considered to be idiopathic at one time. My new MD finally tested me for Lupus and Lyme. Guess what. Both came back positive. This was 15 months aqo. Several tests later and I am still postive.
My problem, is after all of this time, I wonder how long have I had either condition. Also how can I attribute which symptoms to which condition.
My problem, is after all of this time, I wonder how long have I had either condition. Also how can I attribute which symptoms to which condition.
I just tried to post a partial answer but it doesn't show up on the screen. Maybe I'll just do some very short answers and then expand on them tomorrow when I'm at a better connection. The brief answer I tried to post was: telling you lyme has flipped into an autoimmune response to a cured case of lyme is something trained lyme doc may well not do. The autoimmune diagnosis is something docs who don't understand lyme very well seem to be inclined toward. I'm not medically trained,so these are just general comments that you cannot rely on except as some additional points of view that may encourage you to continue seeking additional medical advice.
The 8 mos of doxy may have succeeded in killing or suppressing lyme or another disease carried by the same ticks, called 'coinfections.'. Some coinfections are treatable with doxy but others are not. The doxy may have acted against a lyme infection you might have had and/or a coinfection.
Additionally, the bad reactions of feeling ill when you start taking other antibiotics may be a die-off reaction from the abx killing an infection susceptible to doxy. That is a good thing, but if the reaction is too strong, it's obviously bad for you and needs to be re-thought by your doc. First however instead of scattershot antibiotics, a careful history and physical with appropriate tests based on you symptoms seems a good idea to discuss w a qualified MD. History then test then diagnosis then treatment is a better approach than treatment before tests, history, or diagnosis. If your docs have tested you for coinfections based on your symptoms,then they should share and discuss the results with you. If they have not, then I would ask why.
Swollen knees are often a hallmark of lyme; even the stubbornest docs usually agree with that point.
As to insurance, many of us pay out of pocket and file for reimbursement from our insurance companies. Sometimes they pay, sometimes they don't. The question then becomes how much you are willing or able to spend to try to get well. I personally don't let the insurance coverage dictate what treatment I will seek. It's a personal choice.
My most important suggestion would be to find a so-called lyme literate MD aka LLMD, meaning a doc who looks beyond the current narrow view of lyme diagnosis ans treatment as held by many docs including infectious disease docs.
Sorry this is a bit disjointed, trying to type on a cell phone keyboard. Best wishes to you --
The 8 mos of doxy may have succeeded in killing or suppressing lyme or another disease carried by the same ticks, called 'coinfections.'. Some coinfections are treatable with doxy but others are not. The doxy may have acted against a lyme infection you might have had and/or a coinfection.
Additionally, the bad reactions of feeling ill when you start taking other antibiotics may be a die-off reaction from the abx killing an infection susceptible to doxy. That is a good thing, but if the reaction is too strong, it's obviously bad for you and needs to be re-thought by your doc. First however instead of scattershot antibiotics, a careful history and physical with appropriate tests based on you symptoms seems a good idea to discuss w a qualified MD. History then test then diagnosis then treatment is a better approach than treatment before tests, history, or diagnosis. If your docs have tested you for coinfections based on your symptoms,then they should share and discuss the results with you. If they have not, then I would ask why.
Swollen knees are often a hallmark of lyme; even the stubbornest docs usually agree with that point.
As to insurance, many of us pay out of pocket and file for reimbursement from our insurance companies. Sometimes they pay, sometimes they don't. The question then becomes how much you are willing or able to spend to try to get well. I personally don't let the insurance coverage dictate what treatment I will seek. It's a personal choice.
My most important suggestion would be to find a so-called lyme literate MD aka LLMD, meaning a doc who looks beyond the current narrow view of lyme diagnosis ans treatment as held by many docs including infectious disease docs.
Sorry this is a bit disjointed, trying to type on a cell phone keyboard. Best wishes to you --
I had one positive Lyme test, and one neg. one.
One of my doctors thinks that I have Lyme that has gone auto-immune because my SED rate and ANA's are high. My other doctor thinks I am in the early stages of Lupus. I am lost, upset, confused, and don't know who to trust.
I was on Doxy for 8 months. I felt significantly better the first month, then I started getting symptoms back. They tried a few more antibiotics on me, and the side-effects were horrible. They were unbearable. I was dizzy and felt ill constantly. Finally, I gave up. I even went off Doxy, and I have not gotten any worse since going off it. However, I am not getting better either. My quality of life is decent, but I am so worried because I am only 34 and have a 3 year old and a 6 year old that need me.
I get a rash on my chest, waves of extreme fatique, joint and ligament pain (when my kids pull on my, it hurts like crazy) I have swelling all over especially around my wrists and behind my knees. It is not water retention it is actual swelling. I get numbness and tingling occasionally on half of my face and eyeball, stiff neck (that comes and goes) and is usually comes with a headache. Lymph nodes swell up too (though not that often).
My knees get so swollen (both of the backs of my knees) that sometimes I get red bruises there too. The swelling has been there for 6 months consistanly, but sometimes gets a little worse than norm. It does not get better with elevation or bed-rest. One doctor told me that the swelling behind my knees was actually swollen lymph nodes, one said bakers-cysts, but 2 after that disagreed that it could be bakers-cysts since they are on both knees. My doctor also said it is not water-retention that it is inflammation.
I have an appt. at UCLA with a auto-immune specialist in Dec.(waited 6 months to get this appt.)
What other types of doctors should I be seeing. Infectious disease doctor?
For the record, doctors that are specifically Lyme doctors usually do not take any ins. I got treatment for 8 months and did tons of vitamins, herbs, etc. I can not afford this treatment just in case I have Lyme. It cost my family a fortune. Plus, their is no way to track if it is really working or helping me. The doctors just say, maybe you have this co-infection, lets try xxx antibiotic, or maybe its this, lets try xxx this one. Or maybe you need to do IV treatments, lets try it. Well... ins. does not cover most of it, and it feels like everyone is guessing. Meanwhile, the antibiotics (except for the Doxy) were making me so sick, it felt far worse that whatever disease I have! Not to mention, if it is Lupus, treating me for Lyme could be aggravating it.
One of my doctors thinks that I have Lyme that has gone auto-immune because my SED rate and ANA's are high. My other doctor thinks I am in the early stages of Lupus. I am lost, upset, confused, and don't know who to trust.
I was on Doxy for 8 months. I felt significantly better the first month, then I started getting symptoms back. They tried a few more antibiotics on me, and the side-effects were horrible. They were unbearable. I was dizzy and felt ill constantly. Finally, I gave up. I even went off Doxy, and I have not gotten any worse since going off it. However, I am not getting better either. My quality of life is decent, but I am so worried because I am only 34 and have a 3 year old and a 6 year old that need me.
I get a rash on my chest, waves of extreme fatique, joint and ligament pain (when my kids pull on my, it hurts like crazy) I have swelling all over especially around my wrists and behind my knees. It is not water retention it is actual swelling. I get numbness and tingling occasionally on half of my face and eyeball, stiff neck (that comes and goes) and is usually comes with a headache. Lymph nodes swell up too (though not that often).
My knees get so swollen (both of the backs of my knees) that sometimes I get red bruises there too. The swelling has been there for 6 months consistanly, but sometimes gets a little worse than norm. It does not get better with elevation or bed-rest. One doctor told me that the swelling behind my knees was actually swollen lymph nodes, one said bakers-cysts, but 2 after that disagreed that it could be bakers-cysts since they are on both knees. My doctor also said it is not water-retention that it is inflammation.
I have an appt. at UCLA with a auto-immune specialist in Dec.(waited 6 months to get this appt.)
What other types of doctors should I be seeing. Infectious disease doctor?
For the record, doctors that are specifically Lyme doctors usually do not take any ins. I got treatment for 8 months and did tons of vitamins, herbs, etc. I can not afford this treatment just in case I have Lyme. It cost my family a fortune. Plus, their is no way to track if it is really working or helping me. The doctors just say, maybe you have this co-infection, lets try xxx antibiotic, or maybe its this, lets try xxx this one. Or maybe you need to do IV treatments, lets try it. Well... ins. does not cover most of it, and it feels like everyone is guessing. Meanwhile, the antibiotics (except for the Doxy) were making me so sick, it felt far worse that whatever disease I have! Not to mention, if it is Lupus, treating me for Lyme could be aggravating it.
As noted above, the treatments for Lyme and lupus are disparate. In lupus, an overactive immune system needs to be controlled, whereas in Lyme, the immune system needs to kick into overdrive to fight an infection.
I 2nd patsy10's comment, I've also read ppl who had positive ANA from Lyme. I never did. I did have a high SED rate and a butterfly rash that looked like lupus, but it was Lyme.
Hopefully your docs can really back up and build confidence in the diagnosis before starting treatment, as lupus treatment with steroid would be devastating for Lyme.
I 2nd patsy10's comment, I've also read ppl who had positive ANA from Lyme. I never did. I did have a high SED rate and a butterfly rash that looked like lupus, but it was Lyme.
Hopefully your docs can really back up and build confidence in the diagnosis before starting treatment, as lupus treatment with steroid would be devastating for Lyme.
Oh my goodness!! Lupus AND Lyme disease!! I have been going through trying to be diagnosed and the top runners have always been Lupus and Lyme. The treatments are quiet contredictive arent they??!! Was it just a normal lyme titer that you did or did you go through a nucluear lab like IGeneX? And what lupus tests were positive. Because lyme disease can become an autoimmune and give out a positive ANA. I dont know about the other tests and which ones can get compermissed. Just make sure you dont start lupus treatment with out being 100% positive that its not just Lyme disease. My LLMD told me that if you have had active lyme for long enough it can be very very simalar to Lupus, as far as symptoms AND tests go.
i wish you the best of luck! And keep me informed.
i wish you the best of luck! And keep me informed.
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