posted
Hi everyone, I am desperate for any help...
Was diagnosed in 2014 with late stage along with many co-infections. I likely had lyme in the 1980s when I was treated for severe chronic fatigue syndrome. I did not have any skin issues then but was very ill and on disability.
This seemingly 2nd go around with lyme started with a large rash on my left shoulder. That left in a week and I was left with pustules, other weird finger ulcers, sores; some on rest of body.
This was diagnosed as psoriasis; derm MD did not help. After about 3 yrs of these painful ulcers, I started getting 4-6 yearly episodes of larger ulcers appearing out of nowhere and taking as long as 4 months to heal. Again, MDs not helpful at all either with diagnose or treatment!
Six weeks ago I developed that same shldr skin thingy that then spread over the course of 2 weeks to upper back, neck, ears, face. Awaiting biopsy results. This current skin thing UNLIKE the previous ones as this is MUCH WORSE, BURNS (not Stevens Johnmson)....all I can do is put ice and manuka honey on bad spots and suit in bed!!!
My limited research goes back to either parasites or a rare derm condition that late stagers get, BUT MAINLY IN EUROPE) called ACA (acrodermatitis chronica atrophicans). I know treatment is similar in terms of getting rid of the primary organism causing all the damage. But, my question to anyone out there is:
1) is it possible someone in the US has ACA and could I be tested for that strain(caused by a strain of B. found in Europe)? 2) isn't it important for me to KNOW if I have ACA at this time (as it can be quite severe) and what to expect in the future? Just do not think, nor does my LLND think it is straight psoriasis. It has followed a certain course over the past 6 yrs. with a definite worsening. Shouldn't I know what it could be before starting treatment???
My last oral abx treatment was concluded Feb. 2015.
Sorry for long post but do not who else to turn to! The literature also indicates that even LLMDs know very little about skin issues as a result of late stage.
I am not convinced it is ACA but my sx sure point to it. There is a good summary of ACA on Medscape. Of course I am tempted to contact one of the US docs who co-authored. Thank you all for any input into helping me solve this.
...............................................
(Breaking up a couple paragraphs for easier reading for many here)
[ 08-05-2015, 09:58 AM: Message edited by: Robin123 ]
Posts: 12 | From San Francisco area | Registered: Jul 2015
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posted
I have NO idea if this matters in your situation - when I had psoriasis on my knees, elbows and by my ears, I drank oxygenated water and the psoriasis disappeared. The water was procured from Mexico.
Perhaps play around with oxygen intake as an experiment? Like try drinking some foodgrade hydrogen peroxide, or consider other forms of oxygen intake. Again, I'm saying I have no idea what will work for you.
Posts: 13116 | From San Francisco | Registered: May 2006
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
I am confused. you said you have pustules and such, but the photos for acrodermatitis chronica atrophicans all look more like 'cigarette skin'. I have had that for years and it was getting pretty bad prior to treatment.
now it is much better. I am supposedly 'cured'. who knows.
the wrinkly, saggy, papery, flaky skin started on my feet/ankles/calves, and eventually was working up my entire body. when it got to my face I was in a panic! treament for all my diseases , etc., plus using olive squalane oil have really helped.
my mother was never dx with tick disease (yet!) but I am sure she has it. she has had skin leasions all over that itch like mad. not sure if it's related to ticks, but probably I think
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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posted
I have bad bad ACA. I dont know if I picked up my Lyme in one of my trips to Europe or they just dont know what theyre talking about when it comes to Lyme variants in America. Regardless, one of my massive symptoms. You should have seen the skin on me, and especially in places near my foot, ankle, etc. It thins your skin, makes it dark and pigmented, and it covers whole sections of your body. One of my hallmarks of success on antibiotic regimens for me is the Acrodermatitis going away.
Posts: 173 | From USA | Registered: Aug 2015
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here are some of the photos of my strange skin condition...any help on diagnosis appreciated! Thank you.
Posts: 12 | From San Francisco area | Registered: Jul 2015
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
I see you're in SF. A doctor of Chinese medicine helped me with my skin when I was there. It was awful (rashes from head to toe).
Don't see Dr. Y... in The Sunset. Terrible bedside and not knowledgeable in other problems like lyme and floxing.
There are some excellent doctors of oriental medicine in SF though who helped me way more than a regular MD. There are some good NDs too.
Good luck!
Posts: 2839 | From California | Registered: Jul 2012
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bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
I empathise as i have always had hs .i have been itching fierce since rifing mycoplasm..its no fun One duc said psoriasis is caused by hpv.
..i also heard that morgellons was mycoplasm and lyme complex...may i ask why you had stiches?.. have you tried coconut oil with essential oils..maybe lavender ...or borax mix.
my black little seed looking things have been coming out with bee venom and h202.. i would find relief then go for root cause...demodex ,myco,hpv or even shingles like just ideas ...i hope you find relief soon
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey Gotta dance- love that name!
Sure looks like ACA and Lyme related skin manifestations to me.
I'd like you to check out the Morgellons photos shared below too. Some of your pics are almost dead ringers for Morgellons.
ACA and Lyme in general have MANY different skin presentations and they are connecting more and more to Lyme all the time. Yours look very familiar.
I put this pdf on the Maryland Lyme website after researching and following the topic for a long time. The pictures may surprise you. ALL Lyme related. (Link too long- so I did a "tiny" on it.)
In Europe- and yes, ACA is here, very much so- years ago they used a penicillin based antibiotic to treat it successfully. Often still do.
Lyme ACA does indicate, and is the only true indicator, of the presence of chronic Lyme disease. (True in the sense even the idiot doctors know ACA means chronic infection.)
Patients in the USA with the ACA have used IV rocephin with some success and penicillin also. Watching this appear and following the patients while treating suggests the penicillin worked the best for most.
BUT, even if treated it may eventually come back and you may not totally clear it up. In my opinion, you should be treated to stop the progression and prevent it from becoming worse.
As the ACA progresses it can cause open and painful ulcers in the skin, as well as nerve, muscle and bone damage underneath the visible skin manifestations.
So yes, in my opinion, it really should be treated.
Hope the above helps you on your way to better health!
posted
Google Dermnet Photos. It gives an alphabetical list of dermatological rashes that you might want to have a look at.
Posts: 653 | From Northern Virginia | Registered: Oct 2014
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posted
Gottadance, have you considered Neem oil compresses or a mixture of essential oils?
Niaouli, Vetiver, Heliochrysum and Frankincense essential oils are anti-inflammatory, antiseptic, astringent, analgesic, bactericidal, cicatrisant and/or vulnerary.
Add essential oils to Apricot Kernal Oil or Grapeseed oil mixed (3 to 1) with Evening Primrose oil. Very healing carrier oils for sensitive imbalanced skin.
These essential oils are potent so creating a solution of 1 part essential oil combination to 10 parts carrier oil mixture is a common formulation.
quote:Originally posted by Tincup: Hey Gotta dance- love that name!
Sure looks like ACA and Lyme related skin manifestations to me.
I'd like you to check out the Morgellons photos shared below too. Some of your pics are almost dead ringers for Morgellons.
ACA and Lyme in general have MANY different skin presentations and they are connecting more and more to Lyme all the time. Yours look very familiar.
I put this pdf on the Maryland Lyme website after researching and following the topic for a long time. The pictures may surprise you. ALL Lyme related. (Link too long- so I did a "tiny" on it.)
In Europe- and yes, ACA is here, very much so- years ago they used a penicillin based antibiotic to treat it successfully. Often still do.
Lyme ACA does indicate, and is the only true indicator, of the presence of chronic Lyme disease. (True in the sense even the idiot doctors know ACA means chronic infection.)
Patients in the USA with the ACA have used IV rocephin with some success and penicillin also. Watching this appear and following the patients while treating suggests the penicillin worked the best for most.
BUT, even if treated it may eventually come back and you may not totally clear it up. In my opinion, you should be treated to stop the progression and prevent it from becoming worse.
As the ACA progresses it can cause open and painful ulcers in the skin, as well as nerve, muscle and bone damage underneath the visible skin manifestations.
So yes, in my opinion, it really should be treated.
Hope the above helps you on your way to better health!
Posts: 12 | From San Francisco area | Registered: Jul 2015
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Tincup, do you know of any DOCS WHO DO DIAGNOSE ACA? That is what I need mostly now as you said, a correct diagnose is key to correct treatment! Thanks.
Posts: 12 | From San Francisco area | Registered: Jul 2015
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posted
I would "gladly" try the abx that would likely help ACA as you stated, Tincup, but without a CORRECT DIAGNOSIS I can not go forward!
Posts: 12 | From San Francisco area | Registered: Jul 2015
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posted
of course, I have yet another useless appt with yet another "world renowned dermatologist" this time at Stanford. I know, why go?? All the emdical literature in the world will not make them recognize chronic lyme!
Posts: 12 | From San Francisco area | Registered: Jul 2015
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posted
sorry for venting but this is just about been the end of me...can I sue all the world renowned docs i have seen IF AND WHEN ACA IS DIAGNOSED?
Can i at least sue them for laughing at me when i brought in the ACA info and saying chronic lyme does not exist??
Or, can i simply sue them for just about throwing me to the curb as i still do not have a diagnosis (that makes sense). This is NOT contact dermatitis!!!
Posts: 12 | From San Francisco area | Registered: Jul 2015
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posted
Gottadance, dermatologists won't help... no matter how world renowned they are. This is deeper and systemic from the pics you shared.
If your LLND is not considering you have ACA (there have been cases in US!), have he/she been able to rule out morgellons, parasitic infections and/or an overlapping of conditions?
Example: Lyme + Mycoplasma + parasite infection + underlying autoimmune conditions resulted in bad skin infections and a severe case of psoriasial arthritis in my husband's brother. It wasn't until the Mycoplasma and parasite infection were addressed, then Lyme brought under control that his skin started healing.
Some Traditional Chinese Medicine and essential oils were what finally what helped my bro-in-law because autoimmune conditions were worsened by abx for him.
There's a LLMD in Berkeley practicing Functional Medicine that may be able to help you. I can PM you the name if you like. He thoroughly tests for all kinds of conditions and considers different avenues.
Posts: 114 | From California | Registered: Jan 2016
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TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
GottaDance, Don't overlook Morgellon's Disease which is a dermatological condition which has been proven to be related to Lyme disease. (Medscape link to follow, later -- 2nd link below.)
First though, take a look at the photos on this Morgellon's website -- and take plenty of time to read everything that you can on this website:
I'm being interrupted so this is all I have time for right now, but these two links should be enough to keep you busy for quite a while.
Posts: 4563 | From TX | Registered: Sep 2002
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
I would consider getting blood tests for parasites. Do you have problems with your eyes?
Posts: 2232 | From USA | Registered: Aug 2009
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posted
thanks again to all who responded. yes, have severe photophobia along with reduced reading ability due to sudden blurriness.
Blymey, i will pm you for that docs contact info in Berkeley.
Posts: 12 | From San Francisco area | Registered: Jul 2015
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- gottadance:
by "photophobia" do you mean light sensitivity ?
(as a phobia is - sadly - a hypochondria / psychosomatic or "mind-pretend" label that is wrongly tossed at many patients by doctors who don't understand it's a real physiological / neurological matter - and it can also involve the kidneys & liver).
I just prefer to never have the term "phobia" connected to any of my light or sound sensitivity (hyperacusis) - it can really send the wrong signal to others who don't understand.
Light sensitivity often goes with lyme / TBD and magnesium deficiency. NYSTAGMUS is often also involved and that can result from toxicity in the body.
ANTIOXIDANTS can be helpful such as Mangosteeen, Berberine, Bilberry or others that are also in the Liver support category.
Though not about lyme, this holistic doctor's site and his book are excellent:
Book & website: THE EYE CARE REVOLUTION - by Robert Abel, Jr. M.D. (Ophthalmologist)
Though not at all about lyme, this is one of the best reference resources on my bookshelf that has wonderful chapters, many graciously available through their website.
The ONE EARTH HERBAL SOURCEBOOK (Tillotson, et.al.)
He is a doctor of Ayurvedic Medicine; She a doctor of Oriental Medicine and Acupuncturist. The third co-author is a doctor of optometry, the author of the EYE book above. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- LIVER STRESS can also cause all kinds of skin trouble. Be sure support is well rounded:
- check ingredient safety on all kinds of personal care and household products
Look out for: methyllisothiazolinone - it's even in some "natural" soaps, even Seventh Generation. Best to avoid. When I switched to Better Life "Dish It Out" instead, a rash on my hands go much better.
Also switched out my Avalon bath gel that had harsh ingredients I had not been aware of with ACURE (mint is fairly calm scent. Their unscented smells awful, though).
I found the above on Md Junction and if you Google: colloidal silver Bartonella rash, I think you can pull up another Md Junction post about someone who used that on her rash.
Posts: 653 | From Northern Virginia | Registered: Oct 2014
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Gotta said... "I would "gladly" try the abx that would likely help ACA as you stated, Tincup, but without a CORRECT DIAGNOSIS I can not go forward!"
Let's see, how many years did I survive without a LLMD and without a correct diagnosis? More than I'd like to count! I had no choice than to move forward on my own, which is something you may be stuck doing too.
My point, you don't have to have a politically or medically correct diagnosis in a corrupt world. Figure out what works and do it.
The time you spend looking for someone with a brain attached, with the slim to no choices, the worse the condition can get.
Treat the patient, not the test. At this point it doesn't matter what it is, but it does need to be addressed. Once the science and doctors catch up, then you'll know.
Tincup, I know i need to do something ASAP. What is the abx treatment for ACA? How much penicillin or other abx, how long, etc??? I hate guessing here too but I guess I have too. That is why I want to find a doc familiar with ACA here in USA.
Posts: 12 | From San Francisco area | Registered: Jul 2015
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posted
Gottadance, maybe you can print off information on ACA and take it to your doctor. I hope penicillin fixes the rash. I'm wondering if the underlying cause of the rash could be Bartonella. Do you have other Bartonella symptoms?
I have recently developed a few reddish bumps. I have other Bartonella symptoms - bottoms of feet with swollen insoles, too many (new) blood vessels around my ankles, hypo-pigmentation spot on my leg.
I'm going to take more Resveratrol and a couple of other herbs that hit Bartonella. I'm just posting this in case you have any of the same symptoms. Good luck.
Posts: 653 | From Northern Virginia | Registered: Oct 2014
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posted
Hi, I had been developing a rash that spread beneath the bandaid which I believe from the pictures, might be what your rash was doing. I just wanted to let you know that after trying several things which were not successful over the long term, I started taking Echinacea which I had at home which is 2500 mg per capsule and putting Desiten cream (not ointment)
on the pustules whenever they itched and my pustules and rash are almost gone. Of course everyone is different and this might not be the remedy for everyone but it worked for me. I've also increased my intake of Japanese Knotweed since I have Bart symptoms.
Posts: 653 | From Northern Virginia | Registered: Oct 2014
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posted
Just read through this tonite - looks like you're in the SF area, so I'm pming you -
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
I found also important to look at your diet. Why not try a clean-organic well balanced diet for 2-4 weeks. Possibly a cleanse while eating a good diet. It helped me with a few big Lyme associated problems. They all but disappeared after my first strict cleanse ( pls note I also had gone through a very aggressive abx routine- saved my life. Try the diet and or cleanse. You may find some relief.
Posts: 4 | From New York | Registered: Feb 2014
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