Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Treat the Lyme; if the Lupus goes away, then you have your answer.
All LLMD's I've seen have said my Lupus is Lyme...
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
I agree with Razzle. Lyme and cos cause autoimmunity. It almost doesn't matter what label you give it, you just need to treat things comprehensively (not easy tho).
I'm leary of rheumatologists. If they give a lupus diagnosis, the are likely to recommmend immuno-suppressant drugs. A big no-no for Lymies.
Posts: 2238 | From East Coast | Registered: Jul 2010
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posted
The way my LLMD's put it to me is that I have "Lupus tendencies." I think this means the Lyme is causing Lupus.
-------------------- You name it, I've got it. Full-time medical anomaly. Posts: 432 | From Southeast | Registered: Aug 2011
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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
If you think about it.... a lot of the different pathogens we carry (lyme, babs, etc), these bugs go intra-cellular. Then the immune system responds in an effort to attack these bugs, but they are within our own cells, so the immune system ends up attacking part of itself.... and there you have it....autoimmunity.
Posts: 2238 | From East Coast | Registered: Jul 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Why are you seeing an ID doctor?
You need an ILADS-educated LL MD. ID doctors are not.
While lyme is not the only chronic stealth infection that can cause or contribute heavily to "autoimmune" problems, it's essential that you have someone trained not just in lyme but also other tick-borne and other chronic stealth infections.
An ILADS LLMD or LL ND is the place to begin. See TIMACA's thread here for OTHER stealth infections that many LLMDs consider, too.
OFTEN, those with lyme are misdiagnosed and when the lyme (and other coinfectoins, and nutrient deficiencies are) is addressed, there are many misdiagnoses that fall away.
What ILADS is & WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Often, when "autoimmune" conditions have been misdiagnosed by non-LL doctors, steroids may be prescribed. This can be absolute and long-lasting disaster for anyone with a chronic stealth infection.
Topic: what do STEROIDS actually do to those with lyme? -
Posts: 48021 | From Tree House | Registered: Jul 2007
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
Keebler: I'm seeing an ID Dr for the sepsis that hospitalized me. My LLMD told me to follow their advice and then get back on my Lyme treatment.
I'm grasping at straws now because I had the best of the best ILADS Dr and got worse and worse and worse.
I just started having Skype appts with a Dr K practitioner, but have to wait until the sepsis is gone, with no signs of it returning, before I can start their protocol.
My former LLMD was always trying to prevent me from going auto-immune...I just figured maybe I already went there since the antibiotics did nothing to help.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Perplexed as to why you see an ID doctor but also as to why you'd consider going to a Rheumatologist. They are just as IDSA closed-minded about lyme and ignorant as ID doctors (with the very rare exception).
Again, you need to find a doctor with the education, intelligence and experience regarding lyme, other tick-borne, other stealth infections
AND how to support the immune system, the liver, the adrenals and the nervous systems. Support is key, too.
THAT says it all. But you need a better doctor if someone looks at you, hears your symptoms, your history, sees this list and then still wants to ship you off to a Rheumatologist.
Oy, Vey!
Whoever helped you sort out those diagnoses - are they no longer on your team?
About the Mold, you may need to address that first (remediation, treatment, support). -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
lax mom - that's great that you will be skyping with a Dr. K practitioner!! I think that is the best path by far, imo.
Best to you!
Posts: 2238 | From East Coast | Registered: Jul 2010
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
Keebler: my LLMD wouldn't touch the sepsis issue.
Glad you posted that. My eyes must have missed it. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
Keebler: the diagnosis were sorted out here and there bit by bit by 2 LLMD's. The current Dr K practitioner is taking Mold VERY seriously, since she found it on my DNA swab sample. Scary.
She is going to treat the viruses, mold, detox issues first (oh, I forgot, parasites too)...so I feel like I'm in good hands, as soon as I can get the sepsis to be a distant memory.
My former LLMD (top notch) ignored my detox issues and kept piling on the abx. I had to make a change.
I just long for my life back...so it's easy to be a sheep and just go where the hospital Dr's tell you to go.
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
Pocono Lyme: When I took Mino in April, I felt great. Then my tests came back and I was switched to Septra, Zith, then Bicillin and went downhill.
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Lax, I am so sorry to hear this happened to you (sucks). But I think you are on the right path. I feel like it's really positive to change directions with another approach to healing lyme, or even switching docs, especially for those of us who are either stuck at a certain level, or go down hill.
I am a firm believer that toxins and parasites hold us all back. Unfortunately, I'm not sure very many ILADS docs are actually getting that we really do need to incorporate at least some of Dr K's methodologies into standard lyme treatment.
I relate it to how important it is to incorporate abx with herbs. The herbs really do make a difference. At least we can work on the parasites on our own, even if most of them are clueless about them, IMO.
I also feel like most of them are trying to find the answers on their own. The lyme specialists do share information at the annual ILADS conference, but I wonder about some of them---meaning, does alternative stuff actually get in their brains, or are they too much into allopathic medicine, or stuck on the protocols they are used to administering?
As far as you going down hill after you switched to septra, zith then bicillin, were you still on septra when you went down hill?
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
I forgot to add that I would be concerned about pursuing a lupus diagnosis. I agree with others here. Treat the lyme first.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
My ANA test is negative after 12 years of positive results and a lupus diagnosis. It took about two years of treating Lyme with an ILADS doctor to get out of the autoimmune state.
I don't believe I ever had lupus. I treated it with plaquenil at high doses for years. I think that is why Lyme never got me down. I think that is why out of the three of us, my babesia was more in check.
I would say treat the Lyme but throw plaquenil in there. It did wonders for my fatigue and aching joints. I tried stopping it and all the pain came back.
Take care,
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
Catgirl: yes, I was on all 3, Septra, Zith, Bicillin LA.
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Bactrim sent me down hill. I think Septra is similar. I herxed hard every time I went on it. I couldn't take it and had to go off of it.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
I couldn't read all the posts, but I had a lupus dx long before a positive Lyme test.
I was on prednisone for a long time for the lupus. Now since I started Lyme and co tx, I don't have the lupus symptoms.
In my case, it is Lyme not lupus. But, still, you should get it checked by a rheumy; that is what I'd do anyway.
My lupus never fit the dx 100%; for example, I would have a high ANA and other lupus markers, but when they biopsied
my rash, they couldn't fnd the lupus.
I am praying you feel better and get needed answers very soon.
Posts: 331 | From West Coast | Registered: Jan 2012
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Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
My sister has lupus, + skin biopsy, + blood tests, does not have lyme, as far as she knows.
Posts: 1748 | From United States | Registered: Dec 2011
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posted
Lyme can trigger autoimmunity in some, especially those with the genetic allele HLA-DR4. There are Lyme MD's (LLMD's) who have written about this autoimmune tendency in reaction to a Lyme infection, as being behind many of the "intractable" cases.
As my LLMD said, "what the he-- is lupus anyway?" !!
The disagreement in the Lyme wars seems to be about whether the autoimmunity goes away when the infection is treated, or not. I personally no longer believe my Lyme can be cured, and I believe my Lyme-induced autoimmune illness is here to stay, as is that of other family members.I now choose to call it lupus.
In that sense, I may sound like Steere and company, but only after many years of Lyme treatment. And many of the LLMD's I respect have written about this.
I had positive Lyme tests and 6 years of meds. My ANA has been extremely high and I had a skin biopsy that showed autoimmunity but not classic lupus, maybe dermatomyositis, they really did not have a definitive answer, but it is considered indicative of lupus by MD's. I cannot go in the sun without getting really really sick.
Who knows? Who cares about labels? We just really need more research. I compare this situation to the situation with rheumatic fever and strep. A few genetically predisposed people get rheumatic fever, which is an autoimmune reaction to strep. They actually need to be on antibiotics for life if they get it. As we all know, everyone with strep goes on antibiotics to protect those few who would get rheumatic fever if they did not take the meds initially.
I get upset by the orthodoxy on this forum sometimes. The real answer here is "noone knows." It is possible that a person will come on here with true lupus, or serious autoimmunity, and not seek care, but instead just treat Lyme.That might be dangerous. We need to be open to all possibilities.
The good thing is that Plaquenil treats both lupus and tick borne issues.
Some other things to consider: mino and tetracycline and doxy can actually induce temporary lupus. Sulfa drugs greatly exacerbate lupus. So meds for Lyme could cause real problems: that is what happened to me and my daughter. In fact, tetracycline caused psychosis for her. The LLMD said this was Lyme being stirred up but in retrospect, I think it was a lupus flare from the meds. I deeply regret believing the Lyme orthodoxy and not taking her off sooner: and it was me, finally, who did take her off. Her ANA was sky high and her anti DNA was too, definite lupus.
One other thing to consider is cross reactivity of testing. Syphilis causes positive lupus tests, so Lyme probably can too. Every medical person knows that a positive ANA can be a result of "infection." On the other hand, lupus can cause a false positive Lyme Elisa test. Also, I did a lot of research and found that some of the Western Blot bands may react to lupus (23, and some other, I forget).
I would go to a rheumatologist. It doesn't hurt. You don't have to take steroids, or they may not even be prescribed. Find a rheumie who is Lyme literate, or see one who isn't and take from him or her what you can. I will say that both my daughter and I experience miracles with short term steroids, and we both had positive Lyme tests years ago.
Bottom line for my family is that we no longer take antibiotics (as I said, I took them for 6 years). I feel better off them, but am really not well. I accept what I have to in terms of issues, and do things like Tai Chi, consult alternative modalities when I can afford them, and make sure I rest and don't overextend. It is what it is.
I love my rheumatologist. She knows the whole family. Rheumatologists are used to mysteries and don't really try to pin diagnoses down. I don't see an LLMD anymore. I really don't know what to think, and I don't think anyone else on here really knows what the answer is, either.
Posts: 108 | From US | Registered: Apr 2012
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posted
not everything is Lyme - it is so easy to fall into that mindset once you have Lyme and so difficult and confusing when you have to sort things out for yourself when you feel sick.
At least you have doctors working with you, exploring the possibilities.
I have learned the hard way to remember this when yet one more thing goes wrong: it is not always Lyme!
Posts: 424 | From Connecticut, USA | Registered: Nov 2003
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