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Hi,
I am CDC positive for Lyme and recently tested positive for Lupus. I’m still wondering if they are really related.
I did heavy doses of antibiotics for Lyme and it left me too sick to function. Ever since I went on Doxy only (100mg daily), my symptoms are pretty well controlled. What prompted the Lupus testing was new rashes coming out when outdoors. It’s not a doxy rash – I have that on my hands, so I know what it looks like. The new rash isn’t painful and doesn’t itch. I started to increase my Doxy dose by 50mg every other day. Ever since doing that I have had increased tingling in my hands, heart palpitations, and head to toe nerve pain. My sleep is disrupted now too.
I notice many people on here that list their meds are pulsing low doses of doxy or mino. Has anyone had this same experience when they increased their dose? I’m not sure if this is a herx from Lyme, or a Lupus flare. I know no one here can diagnose anything, I’m just looking for other people’s experiences since I am so new to Lupus.
Thanks!
@York wrote:
I am CDC positive for Lyme and recently tested positive for Lupus. I’m still wondering if they are really related.
I did heavy doses of antibiotics for Lyme and it left me too sick to function. Ever since I went on Doxy only (100mg daily), my symptoms are pretty well controlled. What prompted the Lupus testing was new rashes coming out when outdoors. It’s not a doxy rash – I have that on my hands, so I know what it looks like. The new rash isn’t painful and doesn’t itch. I started to increase my Doxy dose by 50mg every other day. Ever since doing that I have had increased tingling in my hands, heart palpitations, and head to toe nerve pain. My sleep is disrupted now too.
I notice many people on here that list their meds are pulsing low doses of doxy or mino. Has anyone had this same experience when they increased their dose? I’m not sure if this is a herx from Lyme, or a Lupus flare. I know no one here can diagnose anything, I’m just looking for other people’s experiences since I am so new to Lupus.
Hi York,
So nice to meet you and just sorry you had to seek us out! 😉
Yes, Lyme can mimic and trigger all kinds of “autoimmune” diseases…in my case, RA. In the case of others here, mixed connective tissue disease, lupus, scleroderma, dermatomyositis/polymyositis, etc, etc, etc. These spirochetes drill everywhere, hijack our own defenses and even switch on genes. This video explains it well:
http://envita.com/sections/disease/lyme/default.aspx
The high dose, combination therapy used for Lyme and other tickborne coinfections can be very hard to tolerate, especially for extremely hypersensitive lupies. The connection you’ve made to feeling worse as you increase your dose is pretty commensurate with herxing….any change in dose or abx can do this and it’s taken as a good sign that the abx are reaching their intended target. However, there has to be some quality of life and too much herxing can be counterproductive, as intolerable inflammation levels can increase bound immune complexes, cause a back-up in detoxification and prevent the abx getting into tissues. Lupies, in particular, need to take a cautious approach, while also doing what they can to ensure they are getting adequate coverage for all their infections.
The symptoms you’re describing seem neurological in nature, which is also pretty classic for Lyme…the peripheral tingling and radicular-type nerve pain…along with heart palps. I’ve experienced same and know what you’re going through.
Were you diagnosed with any other coinfections? Can you share what abx combos you’ve been on to date/for how long? Do you take probiotics to protect your gut?
If you’d like to add a signature line that appears each time you post, this helps others to respond…e.g. diagnosis, disease duration, meds, supps, etc. You can do this easily by clicking on the Control Panel at the top of the page, then selecting the Profile tab and then clicking on the “edit signature” box. Hope that helps.
It’s late here but, off the top of my head, I can think of one other Lymie here who has presented with “lupus-like” symptoms – Fergie, up in Canada. I hope he sees your post and can chime in for you.
It sounds rather glib to say this, but you’re so “fortunate” to have discovered you had Lyme and tested CDC positive…so many rheumatic patients don’t discover this till much later and even more sensitive IGeneX testing can leave one scratching one’s head. If one manages to make the connection to infectious causes early on like this, can avoid immune-suppressive meds and feels better on abx therapy…this is win-win-win situation!
Welcome to the group! 🙂
Thank you for your reply!
Unfortunately, I’m too familiar with herxing 🙄 and this didn’t really seem like what I have felt in the past. I am on a strict gluten free diet, ample probiotics and detox often.
In the last few months I’ve also had unexplained fevers. I’m curious as to how many people on here have both Lyme & Lupus and I’m wondering if the positive Anti-ds-DNA could really be from Lyme. My Dr is willing to work with me and I seem to feel better on a low, steady dose. Whenever I try to increase, the symptoms I mentioned in my last post show up.
I think Lyme has been an issue for years – but it wasn’t found until 2009. Out of all the meds I have been on, I feel best when on Doxy, but if I increase, I don’t feel well anymore.
I’m trying to decide if I should increase and push through it, or just continue on with what makes me feel best? I know the Lyme isn’t gone – and I read so many relapse stories – so it makes me think I should keep on as is??
How did you all decide what to do?? All thoughts are welcomed. I have my follow up appt in a couple of weeks and need to try to find some direction to talk to him about.
Hello York,
I am a fellow Lymie who’s had an autoimmune marker as you can see in my signature line. I am not familiar with Lupus, but the symptoms you describe sound like what I experienced when I went from a monotherapy (minocycline) after 8 months to a more aggressive doxy/rifampin combination, plus two rounds of subsequent IV abx. Lyme is neurotoxic, especially when abx are killing it, so your nerve symptoms and sleeplessness do sound highly suspicious of a herx and/or toxic overload.
Following up on Maz’s question about coinfections, Lyme ticks almost ALWAYS carry multiple infectious agents, so experienced Lyme literate doctors (LLMDs) know to investigate that possibility. Testing is not great for most, so often it is a clinical diagnosis. As a note, fevers are often associated with Babesia, which is very common with Lyme and difficult to detect.
The best advice I ever got on this board was to get myself to an experienced LLMD. Is your doctor one? If not I would HIGHLY recommend switching to one. Not only do they knpw treatment options, but they can calibrate them to your own unique system and monitor response. In my own case, I worked for about a year with a very open minded medical professional who unfortunately was just not experienced in Lyme. We jointly decided on the minocycline (didn’t know enough to use multiple abx), but when I began to get worse after 8 months, and aggressive alternatives were tried, neither of us had the experience to tell what was a herx, a setback, an autoimmune “flareup”, or emergence of a coinfection. (Turned out to be a combination of the first and last).
Now I’m with a highly experienced LLMD and the difference is literally like night and day. I’m feeling like my normal self again. The doctor (one of the best in the field) told me that autoimmune markers and symptoms are indeed an effect of Lyme/coinfections that he typically sees abate or disappear with appropriate treatment. So don’t be discouraged!
Folks on this board can help you locate an LLMD in your area if you’d like
Good luck!
@York wrote:
In the last few months I’ve also had unexplained fevers. I’m curious as to how many people on here have both Lyme & Lupus and I’m wondering if the positive Anti-ds-DNA could really be from Lyme. My Dr is willing to work with me and I seem to feel better on a low, steady dose. Whenever I try to increase, the symptoms I mentioned in my last post show up.
I’m trying to decide if I should increase and push through it, or just continue on with what makes me feel best? I know the Lyme isn’t gone – and I read so many relapse stories – so it makes me think I should keep on as is??
How did you all decide what to do?? All thoughts are welcomed. I have my follow up appt in a couple of weeks and need to try to find some direction to talk to him about.
Hi York,
Unfortunately, the feeling of unwellness when increasing the dose goes along with the territory. In the case of rheumatics with an inflammatory component to their disease – particularly lupies – hypersensitivity can be an issue. In effect, this is herxing, but it is a case of too much toxin building up in the body and re-circulating. I have a transcript of a talk given by Dr. Brown that explains this phenomenon in detail if you’d like a copy? Also, there is info on the main site here that explains the hypersensitive state:
https://www.roadback.org/index.cfm?fuseaction=studies.display&display_id=184#Anchor-The-14210
Lupies just have to go much lower and slow in many cases with anti-microbial therapy.
The reason I asked what other abx you’d been on to date – combos/doses – is because untreated coinfections can be a real problem, delaying progress on treatment for Lyme. E.g. the “unexplained fevers” might be associated with babesiosis. This is a relapsing/remitting febrile coinfection of Lyme, as you may already be well aware, but if inadequately treated can recur and slow down progress. It took several rounds of therapy for babesiosis for me to break through that barrier, but I took a really aggressive approach last year with Mepron/azithromycin and, while it set me back a bit with my RA, it seemed to open the door for my Lyme treatment to be more effective since. I also don’t have the debilitating fevers, sweats, chills, migraines, etc that I had before.
Are you working with a really experienced LLMD, York? This can make all the difference. My LLMD has brought a number of Lupus patients to remission with abx therapy…I remember him telling me that in one case, it took 5 years for one of his patients. I think she relapsed once, but has not been back to him since re-gaining her remission.
It can be a very difficult decision to decide whether or not to continue treating aggressively or if one has actually treated aggressively enough for the “Lyme mix” of infections. And, it can be a difficult decision as to whether to forge ahead and suffer herxing or to just relax back into a low dose protocol that maintains some semblance of peace from the disease state. Thing is, if you’re getting “unexplained fevers” still, then something is still brewing in the background…my best fellow patient guess is that wretched babesiosis, but a good LLMD would know.
I was in the same dilemma as you, as my first year on heavy Lyme protocols was really rough. I did reach the 50% improved mark but the increasing hypersensitivity was hard to manage. I relaxed back into low dose protocols and reached remission on low dose minocycline and azithromycin within 10 months, but by 16 months suffered from drug-induced lupus and had to switch to doxy. I didn’t do as well on doxy and the babesiosis then decided to rear it’s ugly head. Having treated the babesiosis aggressively now, I’m better able to tolerate the higher doses needed for Lyme and I’m back on track again. I figure it won’t be long now till I’m able to revert back to a low dose AP-style treatment.
I hope you can figure this out for yourself, York. I know I couldn’t have done it without my great doc supporting me, though. Please stay in touch and let us know what you decide and how you get on over time. I hope others will also chime in with their experiences for you.
PS…HMom just kindly posted above mine – our posts must have crossed in the post. I think we must be thinking alike as we both pretty much said the same thing. 🙂 Just didn’t want you to miss her post as mine came later. Thanks, HMom!
Thank you both for your informative replies!
I have had two different LLMD’s now and I also have a local immunologist. Interesting thoughts about babesia. Neither of my LLMD’s felt that Bart or Babesia was an issue but Erlichia was. My immunologist felt that the fevers were a sign of Lupus?
I should have also mentioned that the fevers started right around the time myco p showed up.
I have been on high dose Doxy with Zith and Plaquenil and that didn’t go well. Doxy was removed after 3 months and Ceftin was added – that didn’t go well either. When we backed down on the doses, I still experienced herxing, but it was at least tolerable then.
It just seems like the more we dig and test, the more things show up that Dr’s just say that it’s all related. I also have found that if I put 10 Dr’s in one room, I’ll get 12 different opinions. 🙂
I have several friends with Lyme as well and we all have different LLMD’s and it’s amazing how different everyone’s protocol is and their Dr’s thoughts are!
Thank you for sharing your experiences with me.
York,
When I saw you mention fevers, my first thought was babesiosis also. Do you have rib cage pain, chills, shortness of breath, joint pain (that can be Lyme also). I second the idea of making sure that your LLMD or LLMDs in your case are on the ball. I know it can be exhausting to move from doctor to doctor. If it’s just a matter of not hitting on the right combo, then stick with them but if they are quick to discount co-infections I would start looking around.
As far as the lupus, many lupus patients are sensitive to drugs. It can be very helpful to have testing done to find out if you have issues metabolizing drugs that way you won’t be blaming symptoms on herxing, etc. when it’s actually a reaction to the drug. Check out Great Smokies lab (I think it is now Genova Diagnostics). There used to be some good posts here about the particular tests but I haven’t located them perhaps they are only accessible on the old board.
Hi Parisa,
Thank you for your reply. I will definitely check out those labs. I appreciate the info.
I have never had rib pain, shortness of breath and very rarely had joint pain. Only in the beginning when I first started treatment but it was mild.
I have been fortunate in that my symptoms have always been mild, until I began antibiotics for Lyme.
Thank you all again for your replies.
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