lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Hi folks. Been quite a while since I posted. I've been fighting tick diseases for decades now. Years ago, would never have thunk it!
My body has rejected one medication after another with adverse reactions. In the beginning, I could take all the heavy hitters, but as the years went on, I had to quit this or that, so that now, my protocol is a list of many things, none of them at therapeutic doses but working in some synergy to keep me alive. Without quality of life.
I was on gamma globulin IV until my immunologist retired and I had to find a new doc. New doc defines use of gamma globulin therapy much narrower, so I have not been able to get it again. And probably shouldn't considering the new adverse reaction. (auto immune drug induced?)
Here is it. About two months ago I started to present with a rash. No matter how hard I tried to find it spoken of on the internet, could not find it, until some mention of something similar in "drug induced psoriasis" seemed a partial match. And the discussion I found said that of the drugs reported to cause this, anti-malarials were among them.
The "rash" is little bumps all over patches of my skin, perfectly separated little bumps like on the skin of a strawberry, but bumps, not dips. And they are nestled in this dry, scaly patch of skin. So if you run your hands over it, you feel the bumps and the hard skin.
But there is not itch at all or pain in these areas. They are not swollen or read either, nor do they ooze. Just bumps and dry skin.
They tend to mostly cover flank areas, down my sides, around my ears, sides of thighs and lower legs, with other random patches everywhere, and I mean everywhere.
I tried dropping one medication after another and then adding it back in to figure out what the culprit was, and it appears to be anti-malarials. But since my babesia is the infection that is most affecting me, to the point of possibly killing me, I can't drop them.
Of course going to the doctor is terrifying as they might say drop all anti-malarials, which would do me in.
Yes, there are many specifics behind this story which would take many pages to explain/defend, so please understand that I've been doing this for 20 years, I'm on the Board of the North Carolina Lyme Disease Foundation, and I'm an activist, so I already know the many protocols, the llmds and all that stuff.
I've done heavy detox over the years, hyperthermia in Germany, biophoton in Germany, glutithione in the U.S. and vitamin I.V.'s.
I really need to know if anyone else out there has experienced this and conquered it without having to drop all medications. And if you conquer it, how long did it take to dissipate and disappear?
Even my lips are "chapped" because of this skin stuff.
Hoping for some answers, or just any kind of support while I go through this.
Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Forgot to mention, about 20 percent of my hair fell out at the same time.
Posts: 1032 | From North Carolina | Registered: Aug 2003
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hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
I do not have babesia, but have you tried herbs?
Perhaps look at Stephen Buhner's book or the Cowden protocol.
I did not do well with any antibiotics nor did I do well with anti-parasitic herbs.
Biophoton therapy helped me some and then I found a good energy healer.
I am not well, yet, but gaining ground.
Also, Lymetoo has posted a lot about MCAS (mast cell activated syndrome)--changing diet. I don't know a lot about it, but you might look into that, as well.
Blessings to you.
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8880 | From Illinois | Registered: Aug 2004
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lymewreck36
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Member # 4395
posted
Thank you hiker53. Will look into it. Rash is now surrounding my head and face. Hair falling out. My eye feels "vulnerable." Going nuts.
Posts: 1032 | From North Carolina | Registered: Aug 2003
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
O.K. Looked over the MCAS and definitely don't have that. Also, dropping an anti-malarial causes an immediate reduction in the skin rash. I just can't stay off and live. What to do.
Posts: 1032 | From North Carolina | Registered: Aug 2003
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
lymewreck36, I am sorry you are dealing with this. The rash sounds horrible.
Which anti-malarial are you taking? Have you tried the others? Have you tried A-Bab? I could never tolerate it, but maybe it could help. It does have to be ordered by a doctor though.
Posts: 4681 | Registered: Oct 2000
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
I have tried every anti-malarial out there. Mepron with zith and/or biaxin, malerone, plaquenil, Lariam plus Cleocin, Alinia, Buhner tinctures, artimisinin, all parasite drugs and herbals, Mimosa Pudica, ..if I left something off, it was an accident. And I've tried these in all kinds of combinations and alone. My body just says no to getting well, no to further treatments. Only the grave is left. But I have three daughters with tick infections that need me.
Posts: 1032 | From North Carolina | Registered: Aug 2003
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Oh, yes I've done all the A-Babs products. I see no solutions.
Posts: 1032 | From North Carolina | Registered: Aug 2003
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posted
your mailbox is full....
Posts: 477 | From Pennsylvania | Registered: Nov 2015
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
Have you stopped it long enough for the rash to clear and then restarted it?
What about seeing an allergist to see if you can be desensitized to the antimalarial? I believe this can be done for certain medications.
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Cannot drop medication at all. one day is it.
Posts: 1032 | From North Carolina | Registered: Aug 2003
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Bartonella causes a rash in some people exactly like you describe.
aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
I ended up getting a rash that looked very similar to ringworm. I also developed cracks and sore dry skin on the sides of my mouth.
I'd get this monthly. Went to a dermatologist and was diagnosed with fixed drug eruption. It was caused by one of my antibiotics that I'd taken before with no problems.
Must have reached a threshold and my body could no longer tolerate this one particular RX.
I had to stop the RX.
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6138 | From Columbus, GA | Registered: Jul 2004
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Thanks guys. My situation sounds similar to Alaska Lone Wolf. Continued feedback is welcome.
Posts: 1032 | From North Carolina | Registered: Aug 2003
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
The Mast Cell thingy does not seem to be a dead ringer for me, but I'll bring it up to my doctor tomorrow.
Posts: 1032 | From North Carolina | Registered: Aug 2003
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
I'm sorry you have to go through all that.
Babesia is hell, but drug reaction is hell as well.
I don't know what to say, but what I've seen here is that antimicrobials stop working when microbes find secure places in the body to hide.
You know, a point with an accident, or a weakened part (old infections), or simply a blocked organ due to toxins...
The only way out is either acupuncture to 'open' those places, so that whatever herbs you are taking come inside, or even your macrophages or immune cells go well inside these damaged places.
It looks like fiction, but acupuncture has been practiced for 4- 5,000 years in China, and they still continue using it today, despite use of Western drugs.
The only problem is that there will be loads of trial and error until you find those blocked points, which could be problematic (as you can't live one day without antimicrobials, which I totally understand).
That is why I keep saying to people: I have no clue how you guys get rid of infections without energy testing. I'm totally blind without it.
Finding hiding places for chronic infections is somewhat easy with energy testing (in my personal opinion). It takes a bit more time to find what is blocking though.
Then when that is found, babesiosis require very specific tuned treatment, as it is so intelligent to hide and come back again, probably due to pleomorphism (in my opinion).
So you got a double problem: they know how to hide (dr. K spoke about that in this last webinar about lyme) and even when you finally open the hiding places, they will require a very specific sequence of treatment, that varies from infection to infection, person to person.
So how to find those variables? The only way for me was through energy testing it DAILY, until babesia gave up.
it looks a crazy description, I know, but that is how I experience babesiosis twice. It was my worst lyme infection, very hard to treat.
That is why I don't see how someone can find the way out a bad babesiosis infection without energy testing:
... it would have taken me my whole life to find all these acupuncture combinations and that multiple herbal/ drug sequence of treatments,
....and I don't think a lifetime would be enough to finally hit the good combination...
Another point that may block healing is psycho blockades. I never believed it until I was treated for a specific blockade, and suddenly, herbs that did not work started working.
All dr. K's followers will swear they see that happening all the time. And only after living that experience, you actually can believe.
The treatment is so simple (by psycho kinesiology), but the problem again is to find the exact reason why your mind may be blocking healing...
Posts: 6199 | From Brussels | Registered: Oct 2007
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quote:Originally posted by lymewreck36: Thanks guys. My situation sounds similar to Alaska Lone Wolf. Continued feedback is welcome.
- She has MCAS also.
I've had years of reacting to meds .. happens constantly. That's a pretty big sign of possible MCAD.
Then there are the rashes....
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
I'm stating some obvious things, so bear with me. Are you doing a lot of detox? If I were you I'd do daily coffee enemas and whatever else you can tolerate.
Are you doing a lot for Candida, ie, a LOT of high-dose probiotics, like Visbiome, or Visbiome Extra Strength?
Visbiome is the replacement for VSL #3, which is no longer what it was. The Extra Strength is the rx version, which is double-strength. I thought of this, because of the cracks at the corner of your mouth and the chapped lips, both of which are symptoms of Candida and lack of good bacteria.
Granted, these may be only a part of the problem, but they are important.
Many others have good ideas & suggestions here. Brussels is right about the testing issue (and other things, too, of course). There is a small learning curve there, but not really so hard. Look up the O-ring test, which is easy.
IV artesunate is one idea for Babesia. Dr. K uses it, I believe. Do you have a central line? If not, you could use peripheral lines. I don’t know if you have a doctor willing to rx it. Nor do I know if you could tolerate it.
Please keep us updated. I hope that you can find the answer promptly.
Posts: 3771 | From around | Registered: Mar 2008
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
Just wanted to chime in that once off the offending RX I've never had the ringworm type rash again or dry cracked corners of the mouth. Definitely fixed drug eruption for me.
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6138 | From Columbus, GA | Registered: Jul 2004
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