posted
Sorry this is so long.....I hope nobody has gone through this, but if someone has, I would appreciate any advice.
Symptoms:
In Oct 2007 I noticed bumps on my thighs.
Some were red while others were white.
They both sort of looked like maybe my pants had rubbed against my thighs and either irritated the skin or the hair follicles.
By the end of Nov 07, the ``bumps'' had turned to painful, itchy, lesions where some appeared deep and un-healing, and some were scabbing somewhat which of course would cause those to stick to whatever I was wearing.
By mid Dec numerous lesions were on both of my thighs, stomach, neck, face, and both forearms with my lips fully inflamed.
A few lesions were noticed on my ankles, top of feet, top of toes, top of fingers, in the cuticles on both hands, one ear lobe, both shins, both elbows, and the back of my neck.
My medical condition:
In Sept 2003 I had a gastric bypass, went from 310 lbs. to 180 lbs. and things were great.
Then in June 2006 I had emergency small bowel resection surgery resulting in 60% of the small intestines being removed due to adhesions (scar tissue formations) and then I lost more weight to 165 lbs.
The remaining small intestines are still configured in the gastric bypass formation.
Then in June 2007 I had to have a blood transfusion and then iron by I.V. infusions for 2 months as my hemoglobin count had gotten down to 6 (it should have been between 12.5 and 15.5).
In October 2007 the bumps (then changed into sores or lesions) on my thighs showed up, they then spread to various areas of my body and they hurt.
I am now down to 140 lbs., can't sleep, can't stay focused, I have no energy and my life has been a living hell since then.
Test done:
Since June 2007, I have had monthly blood work drawn to keep tabs on my numbers and all areas have shown to be in the normal ranges except for two: ``White Blood Cell Count'' which has stayed in the high ranges around 12.9 (s/b 3.80 - 10.80) ever since the bowel resection was done, and the ``Absolute Neutrophils'' has been in the high ranges around 10,965 (s/b 1,500 - 7,800)
What the doctors have said/prescribed:
Oct 07 my main doctor said he had no idea what the bumps were, prescribed a steroid ointment to apply 3 times daily. No improvement.
Nov 07 The lesions spread up my body and my lips were raw, inflamed, scabbing, and would bleed if I licked my lips, the doctor thought it was Herpes (I've had "cold sores" before, I thought at this point he was just guessing), he prescribed Valtrex pills and some Herpes ointment for lips. No improvement.
Dec 07 I went back to my doctor as the lesions seemed worse to me and weren't healing, labs all looked fine except for the continuous elevated white blood cell count and elevated Absolute Neutrophils, he sent me to a dermatologist.
The dermatologist took a ``punch biopsy'' of one lesion which was a new one appearing just that morning. Lab results said ``possible insect bite/reaction''.
In Feb 2008 Dermatologist prescribed ``Cephalexin'' 500mg 3 times daily and ``Triamcinolone/Sarna 1:2'' ointment to apply to all skin areas 3 times daily.
I am still on this antibiotic and using the ointment.
He ruled out lice, scabies, eczema, psoriasis, Lyme disease (test results said negative), allergies, etc......He said he is not sure what the lesions are being caused by.
Mar 08 I was sent to an Infectious Disease Specialist, labs with him were negative for HIV, Hepatitis A, B, & C, rheumatoid arthritis, etc...
This Doctor felt the skins lesions were due to the small bowel resection causing a mal-absorption of nutrients and vitamins, specifically the ``B'' vitamins.
He suggested I take "extra" vitamins.
Current situation:
I am still taking the Cephalexin 3 time per day, using the Triamcinolone/Sarna ointment 4-5 times each day, and I am taking 5 times the normal recommended daily amounts for all ``B'' vitamins and take 5 multi-vitamins so my body will at least absorb some of them.
Since increasing the vitamins the majority of the lesions are slowly healing now; a few new small ones have appeared, however, about ten of them are still not healing.
Yesterday I decided I could not take the pain of one of the lesions which is on my wrist.
No matter what ointments I used, or alcohol or hydrogen peroxide, it just wouldn't stop hurting.
I used tweezers to dig into the lesion, removed a small partial scab, and all kinds of nasty looking stuff came out, not any puss, but lots of blood, and it hurt like hell, and when I was done removing this stuff, the pain was gone and the bleeding had stopped.
When I was cleaning up from this ``home surgery'' on my wrist, I noticed what looked like some of the spots of blood would ``jump''.
I used the tweezers to poke at the stuff that came out of the lesion and anything that wasn't stuck to the napkins would ``jump'' across the napkin.
I used a magnifying glass to look closer but I couldn't determine if the ``jumping'' things were bugs or not.
There aren't any legs or antennae visible. When I poured hydrogen peroxide on them, the bubbled and made the red blood disappear leaving what looked like pieces of tissue.
What could the "jumping" tissues be? It is possibly Lyme disease with co-infection?
I feel the numerous doctors I have seen don't know what they are doing if they can't figure this out after so many months so I am trying to "find the cure" on my own. Any help is very appreciated !!!
posted
This is interesting to me. My wife has had an unexplained itchy, bumpy back, legs and arms for about 5 months now. She too has been to a derm and gotten two biopsies. She was given steroid cream as well as oral steroids, which did help. Her non-LLMD derm told her that it may be a manifestation of strep. Our LLMD does not know what to make of it either. She started taking Amoxy for her suspected Lyme and it has improved the skin issue a bit, but not enough to make it go away completely.
Skin issues and Lyme, by my little research, seem to be an area where not enough is known. Many people with Lyme have weird derm manifestations, but again, it's my understanding that derm issues and Lyme are poorly understood.
Keflex is generally a good ABX for many derm infections, but may not be the best choice should this actually be a manifestation of Lyme. You may not see much improvement in the derm issues if it is due to Lyme while on Keflex. Just my two cents though.
Keep us posted.
BT
Posts: 299 | From New Hampshire | Registered: Jul 2007
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Do some reading on Celiac. I know that about 40% of celiacs have derm manifestations.
bt
Posts: 299 | From New Hampshire | Registered: Jul 2007
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klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
Please do a search here or on Google for MORGELLONS Disease. This is thought to be a coinfection with Lyme and it sounds like it may fit your symptoms.
I am truly sorry for what you are going through. You have my heartfelt prayers for some relief.
Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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Clarissa
Frequent Contributor (1K+ posts)
Member # 4715
posted
So sorry for your horrific ordeal.
It's sounding a little Bart-like to me so you may want to do a search for Bart rashes.
I'm sorry that's not very helpful but you're in my thoughts and I hope you discover what it is much sooner than later!!
I agree with Eyebob that skin issues are still a very murky area when it comes to Lyme and co.
I would also endorse Klutzo's suggestion to do a search on Morgellons. Even if this is not what your lesions are, the information will probably be helpful.
Also do a search on Lymenet for posts by a member named JWF. He and his wife successfully dealt with Morgellons via a combination of antibiotics and a number of herbs, supplements, and topicals. His posts were of tremendous help to my husband, whose TBI included some nasty skin problems.
Although this may sound ridiculous, one of the things that JWF recommended that helped my husband tremendously was a peppermint enzyme spray that you can get from Safesolutionsinc.com. It is marketed as a cleaner, but you can use it topically. It is totally natural, and it smells great. You buy it concentrated and then dilute it. Spraying this on his skin several times a day really seemed to help with my husband's skin lesions. They were not the ones you describe, but were fairly consistent with some of the descriptions of Morgellons (i.e., emitting fiber-like structures).
Dermatologists and ID doctors are not going to have a clue about this. You need to find a LLMD. I see that you're in FL, so you probably have some resources closer to home, but I believe there is a LLNP in San Francisco, GS, who specializes in Morgellons. Perhaps others on the board know more about this?
Please keep us posted!!! Take care.
Viva
Posts: 532 | From southeast US | Registered: Oct 2005
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posted
sounds like morgellons to me too. do a google search on it, maybe you can find some info on it and some people who have it. beware of "miracle cures" of anyone selling anything.
the vitamin deficiencies could play a role too. with gastric bypass, it could be difficult to absorb vitamins, thats one of the complications, and that weakens your immune system and you come down with all sorts of things healthy people dont get. find a good protein supplement too, with all the vitamins in it you need.
Posts: 615 | From maryland | Registered: Oct 2007
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The way you describe your lesions is a close match to one of the many manifesta- tions of Morgellons. My wife and I fought this condition and Lyme disease for 1 1/2 years before resolving both with herbs.
There are at least a couple of Morgel- lons groups in Florida that may provide some help. Also, you can contact the NMO- http://www.thenmo.org , and the Morgellons Research Foundation- http://www.morgellons.org/index.html for more information.
Unfortunately there is very little hope of any help from dermatologists and even less from IDSA physicians- both of whom are in denial about chronic Lyme disease and Morgellons.
Our herbal approach also worked for my mother-in-law, in short order, but that was probably due to catching it early.
Blue Skies......John
Posts: 134 | From North Carolina | Registered: Sep 2004
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