posted
has anyone ever gotten large lumps under their skin?
we work for a school and do not work during the summer. when we came back to work, we revealed our diagnoses to eachother. she said she was diagnosed with Lupus even though the tests came back negative.
i speculated at this point that she may have been mis-diagnosed with Lupus since a lot of our symptoms were the same. but then last week she showed me these large areas of lumps (that's the best way i can describe them) on her arms and chest. they are not discolored at all, just raised areas, like her arm is, well, lumpy.
has anyone ever heard of something like this with lyme?
Posts: 95 | From IL | Registered: Jun 2010
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posted
problems proof reading today! if you couldn't tell, this was between me and a co-worker with similar symptoms....
sorry for any confusion!!
Posts: 95 | From IL | Registered: Jun 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- My belly is loaded with lumps, about the size of small marbles. At times, they swell and hurt terribly. Antioxidants help to reduce the pain.
I just don't give it much though as I have so many other matters of greater importance. Over the years, doctors have said they are from fibromyalgia and I just say "yeah" - never did any doctor seem to be concerned, not to say I wouldn't like to know more but I just don't have the energy to look into this further (and I've no LLMD anymore).
Anyone dx with lupus should be assessed by a LLMD. I'll post a set of links for your friend.
However, I think she should also consult some other specialists about those lumps. This may or may not be lyme or lyme related.
Could be lymph node blockages - or a number of other things. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- LLMD = Lyme Literate MD, one who is "ILADS-educated" so to speak. Many LLMDs also suggest nutritional support, along with treatment.
LL ND = Lyme Literate ND (naturopathic physician), also best if ILADS-educated. Some have completed the ILADS physician's training program. In some states, NDs can prescribe antibiotics. Most LL NDs do suggest antibiotics along with support supplements.
ILADS = International Lyme and Associated Diseases Society
TBD = tick borne disease. There are many tick-borne infections and lyme rarely travels alone.
STEALTH Infection = hidden, sneaky, potentially fatal but still devastating even if it takes a slow approach. Not easy to find with normal tests. Special labs often do a better job with testing.
Lyme is just one of many chronic stealth infections. Stealth means able to evade the immune system and detection with testing - but also able to act in sneaky ways to achieve destruction.
- In the menu to the left of their home page, you can order DVDs of past ILADS seminars. You might also be able to borrow some from your local lyme support group.
This are invaluable to understanding how these infections work. And, none of this is taught in medical schools. None.
(27) REASONS WHY A SERONEGATIVE TEST RESULT MIGHT OCCUR
============================
TESTING
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
MAKING THE MOST OF YOUR LLMD VISIT -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Steroids are commonly used to treat Lupus. I had been misdiagnosed as having lupus (years before I was positive for 3 tick-borne infections and 3 other chronic stealth infections).
Steroid treatment before the lyme diagnosis nearly killed me.
Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses
16th edition, Copyright October, 2008
Joseph J. Burrascano
Excerpts:
P. 4:
. . . More severe illness also results from other causes of weakened defenses, such as from severe stress, immunosuppressant medications, and severe intercurrent illnesses.
This is why steroids and other immunosuppressive medications are absolutely contraindicated in Lyme. This also includes intraarticular steroids. . . .
From page 12:
. . . More evidence has accumulated indicating the severe detrimental effects of the concurrent use of immunosuppressants including steroids in the patient with active B. burgdorferi infection.
Never give steroids or any other immunosuppressant to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result, especially if given for anything greater than a short course.
If immunosuppressive therapy is absolutely necessary, then potent antibiotic treatment should begin at least 48 hours prior to the immunosuppressants. . . .
Page 20:
. . . and absolutely no immunosuppressants, even local doses of steroids (intra-articular injections, for example). . . .
. . . "Steroid Disaster" is a term coined by the pioneer of Lyme Treatment . . .
Corticosteroids are immune suppressants, the last thing a Lyme patient needs is to lower immunity.
Can you imagine, your body trying hard to fight off the spirochete bacteria and suddenly and immunosuppressants is introduced, "freezing" your immune system, rendering it unable to battle, giving great advantage now to the Lyme bacteria to spread and go wherever it wants .
Corticosteroids can last in the body for months, usually around 6 months. In many bacterial infections such as LD, damage can be done.
Many Lyme patients (such as myself) triggered LD with cortisone shots, pills, inhalers, etc. I can tell you, it is a nightmare I wouldn't wish on my worst enemy.
It is imperative to NEVER take corticosteroid for pain if you know you have a bacterial infection.
Some bacterial infections are so severe that a shot of cortisone could kill you, although that would be unlikely with Lyme, but rule of thumb, bacterial infections and immunosuppressants do not mix! . . .
. . . Dr. Burrascano makes it clear in his treatment guidelines that steroid treatment is detrimental, these are excerpts from his guidelines:
"More evidence has accumulated indicating the severe detrimental effects of the concurrent use of immunosuppressants including steroids in the patient with active B. burgdorferi infection.
Never give steroids or any other immunosuppressant to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result, especially if given for anything greater than a short course.
If immunosuppressive therapy is absolutely necessary, then potent antibiotic treatment should begin at least 48 hours prior to the immunosuppressants.
The severity of the clinical illness is directly proportional to the spirochete load, the duration of infection, and the presence of co-infections. These factors also are proportional to the intensity and duration of treatment needed for recovery.
More severe illness also results from other causes of weakened defenses, such as from severe stress, immunosuppressants medications, and severe intercurrent illnesses.
This is why steroids and other immunosuppressants medications are absolutely contraindicated in Lyme. This also includes intra-articular steroids."
An easy explanation. Your immune system are the "soldiers" of your body constantly standing by to attack any foreign invader.
When an immunosuppressant is used, it is like killing off or knocking out most of your "soldiers", now your body is open to all foreign invasion and while your immune system is knocked out, those invaders can go anywhere, your heart, liver, brain - everywhere.
- full article at link above.
=========================
[poster's note below]
Low Dose Cortef to help adrenal repair:
However, temporary use of very LOW (sub-clinical) dose hydrocortisone (Cortef) has been used as the last resort for lyme patients close to adrenal failure.
The adrenals (and the entire endocrine system) really takes a hit with lyme. Adrenal failure can become fatal so, if nothing else is working, Cortef can be a life-saver - or prevent a patient from reaching a critical stage.
Under the care of a LLMD, this can give the adrenals enough of a rest in order to start healing. However, usually adrenal support measures known as adaptogens are first tried. For most, adaptogen support is enough (along with good self-care).
Those include Eleutherococcus senticosus, Ashwagandha, Cordyceps or Rhodiola (starting slowing with a low dose as that can be too stimulating for some patients -- and too much stimulation is damaging to adrenals). -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
i'll have to ask her if they're painful, she didn't mention that they were. they are large, probably a few inches in diameter. they just appeared out of nowhere and her doctor doesn't even know what to do. she's wingin' it basically and sending her from one specialist to another.
i've been hesitant to suggest that she see an LLMD because i don't want to seem pushy or a know it all but i'm worried about her. i was thinking of suggesting that her dr. run an igenex lyme test and see what that says. it couldn't hurt...
i don't know the extent of the medications that she has been on but do know that she's been on topical and oral hormones for the adrenals. she also had a vit D def. that did not improve with supplements (mine did). i'm not sure what changed over the summer though after getting the lupus diagnosis.
thanks for all the info that you provided! i didn't know about not using steroids if you have lyme. i was given singulair and an inhaler (proventil) for shortness of breath, coughing, etc. those are ok right? i'm so glad that you're ok!
Posts: 95 | From IL | Registered: Jun 2010
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posted
update: she says the one on her abdomen is painful, the ones on her arm are not. i talked with her about getting an igenex test and she kinda shrugged me off.
she went to see a rhuemetologist monday, had a sleep study done monday night and a 2nd opinion rhuem. on tuesday. both the dr.s agree that she has secondary lupus to severe inflammation caused by FMS. they also said she only sleeps 19 min of REM sleep per night. the lupus symptoms are flaring because the FMS is so bad according to her dr.s. also she is still vitamin deficient and anemic, has problems with her heart, lungs, and adrenals.
i still don't know what to make of this diagnosis but i can't force her to get the igenex tests done. anyone have any advise or literature that i can print and give to her specifically about FMS or Lupus actually being misdiagnosed Lyme?
unfortunately she just won't go on my word alone...
Posts: 95 | From IL | Registered: Jun 2010
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
If she has Borrelia-she could also have many hiding co-infections.
She must know Lupus and FMS are just syndromes of unknown origin that just use drugs to keep down inflammation.
While not doing a thing for the cause.... Here is a couple articles.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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