posted
LIVE AROUND HUNTINGTON/RONKONKOMA/ISLIP/SMITHTOWN LONG ISLAND SUFFOLK COUNTY NY
Yes, had mentioned not my first post. I called some doctors on list - I can barely make it through the list thank YOU to you and sici though. I appreciate it but since not having luck with Dr. C. or Dr. R yet, figured I would ask again for help - and update the strange symptoms I am not sure if anyone else with Lyme experiences.
Hi - I am having all of the norm symptoms of Lyme plus neuro Lyme - some for 4 years and then in June 08 after 2 spinal fusions, I started getting much more and worse symptoms including all neuro ones 8 months post surgery.
Not sure why I really never get any replies - I try to leave all info people request - makes long but I am trying to space right and make it the way everyone wants it - I would love some help please.
I really do not feel well and would love some help to even get through the next day. I am not yet diagnosed but have been tested for EVERYTHING ELSE and nothing matches all of my symptoms like Lyme does.
I need help, a doctor, treatment and I really need it soon - please. It is a long post - and I may repeat myself & not use complete sentences. I am sorry - my mind is not working right. and I am sorry but I need help and I have no idea where to get it.
I have gotten doctor list from member on here which is appreciated and am waiting for 2 drs to call or not call - which is frustrating to not just be able to make an appt because I really need to get in soon.
My recent western blot came back negative - do not have test report yet. ID dr had tested for babesiosis before testing for Lyme so not in connection to Lyme somehow - peripheral smear and that was negative.
However, I have identical symptoms and more to every list I have ever seen and am getting hopeless - tons of doctors over 4 years and over last 8 months alone. No doctors seem to put it all together.
I feel that I got Lyme 4 years or so ago, then a year later had sudden onset osteoarthritis to my spine from the bacteria spreading to the weaker parts of my spine and then after the spinal surgeries, 8 months ago, that trauma to my body made the infection much worse - causing neuro symptoms.
About 4 years ago, lost all my energy after trip upstate and to PA - like a different person, tired, fatigue, felt unwell all of the time.
A year later my low back started to get very stiff. little while after I had an overnight attack, essentially on my spine with fever, swelling, weakness of legs, radicular pain, etc. Hospital handled it poorly and failed to test for infections high SED/ESR rate.
I became disabled overnight. Edemas in thoracic spine & severe bone loss. Similar to osteomyelitic changes but with absense of spinal tap or bone biopsy, infection could not be confirmed.
Two years later, 2 spinal taps were normal and bone biopsy did not have enough bone specimen to tell if infection had caused sudden severe onset of osteoarthritis in a 28 year old.
I am getting worse. I am almost losing all of my hair, my neck skin is getting very thin and if pulled taut when I hold my head to the side or up, it is like you can see the layer of skin or cells, or fat under my top layer of skin.
It looks like lumpy flat stuff is under my skin - must be some loss of collagen or skin layers. I have soft fleshy swellings around my wrists, ankles, sometimes my toe and finger joints, slow healing cuts, my neck under my chin was swollen (not hypothyroid though maybe seronegative hypothyroid from Lyme like I had read can happen) - something is wrong with my skin and hair bad!!
I had livedo reticularis everywhere and tons of angiomas appear all over in matter of months. I also get telangiectases especially when hot - after shower or working out badly - look like little red bursted blood vessels all over.
I was in the sun for 10 minutes one day and got a bright red fluorescent rash on my upper chest and arms - it kind of scarred my skin that strange strange burn. Now, I get those little red bursted vessels there. My face skin is much thinner can see blue veins around my mouth and nose areas.
So, I think this could be the start of Acrodermatitis Chronica Atrophicans. Derm doctors have said like nothing - oh too much sun (never in sun) or aging (overnight?)
Something is wrong - I can see the curve into my jaw bone in the back - because the skin is so thin - it feels strange. Jaw lymph nodes have pain a lot and sensations.
HAS ANYONE HAD THIS HAPPEN BEFORE GETTING ACA? It is possible I have had Lyme for 4 years undiagnosed and that these spinal surgeries threw it into overdrive.
I have read trauma can do that to a person infected with Lyme. Also, I read in British Columbia, Lyme can cause severe sudden painful, disabling osteoarthritis in some people. The bacteria can go to spots already weaker in the body. I have had the neg recent western blot and 1 or 2 past negative blots.
But I have every symptoms. I am scared, out of doctors to see and hopeless - really.
Can anyone help me with the name of 1 doctor in Suffolk County - or Nassau county NY but not the city, that you know knows how to test beyond western blot and treat and test for all co infections. I am scared to pick a dr out of that list. If this is chronic Lyme and now neuro Lyme, I cannot wait any longer - I am going to lose all of my hair at 31 and my skin is going to start wrinkling off my body and these things may never be reversible.
These doctors do not know anything - I have seen a ton. I am waiting to hear back from a Dr. L at Stonybrook out here that may know how to test beyond blot and a Dr. Ru out in east NY that I have heard mixed info about but who sounds well educated on Lyme.
If someone can let me know who to see - before it is too late. I feel like they will only figure out what is wrong with me when I am dead. I am sorry for the long post - I do NOT know what to do. PLEASE HELP -
have you gone through this - do you know about this weird skin rippling under the top layer of skin, seeing like lumpy skin through top layer - thinning skin, skin starting to wrinkle?
Everywhere I had the livedo, now I have some soft swellings - outer ankles wrists, toes, fingers, under chin, stomach - now my knees are swelling too - and now in those spots on extensors of skin, skin is starting to atrophy like. I get this weird red eruption
I would say that moves around my body whenever. All of a sudden I will get a very itchy red area on wrist or leg - red before itching and then it will just go away - goes to finger area, inner arm, ankle - it is like something is moving around my skin.
I am hallucinating, having horrible head pains and dents appearing in my skull, sensations and more.
I know you are all leary of giving out doctors but I need ONE great doctor please!! One you know 100% in Suffolk County or Nassau county NY that will help me and soon.
I feel like I am dying over here dreading the next batch of symptoms to start again or for new ones to start. I am terrified and need help. I cannot live like this anymore - getting worse. I thought the surgeries would fix my back but apparently not -
I am still in the pain I was in before surgery. So, something else is causing this pain- the 2 fusions went fine. Something else is like in my skin and blood and won't stop attacking my body.
PLEASE I BEG YOU TO HELP ME AND LET ME KNOW IF YOU HAVE HEARD OF THESE WEIRD SKIN SYMPTOMS. I HAVE READ THE SYMPTOMS AND ALL OTHER INFO FROM DIAGNOSTIC HINTS AND GUIDELINES AND MORE -
I know my other symptoms are consistent with Lyme but other than ACA which is complicated to read about how they describe the changes in the skin - I have not read your skin gets thin and you can see under it or about swellings in joints - like puffy weird soft fleshy swellings around outer ankle and wrists - under chin.
I just read all this under ACA. I am so scared. please help.
I tried to make this as readable as possible - I do not feel well.
I hope someone can help me. I feel like things are crawling on my head and down my back and under my skin all day -
I cannot take it anymore. I feel like I am going to lose my mind. Best of health and wishes to all of you.
[ 08-31-2009, 02:06 AM: Message edited by: karmaa55 ]
Posts: 9 | From SUFFOLK COUNTY LONG ISLAND NY NEAR ISLIP & HUNTINGTON, PATCHOGUE, RONKONKOMA | Registered: Aug 2009
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bettyg
Unregistered
posted
karma,
great job on your spacing, etc. so we neuros could read it, and welcome.
please go back up and DELETE DRS. LAST NAMES; YOU CAN SHOW THEIR LAST INITIAL AND STATE ONLY
just click on pencil, 3rd box to right of your post above, which opens up subject and text areas.
please copy this entire thing when you are done, and post in SEEKING DR.
show the LARGEST CITY NAMES in the 2 counties you mentioned; our lists are set up by CITY NAME NOT county names....
subject: need llmd in ....... or ...... in new york
paste it there
go to lower left hand corner and mark box so you receive all replies ok.
if you post over there NOW, i'll help you still tonight since i'm just getting online ok!! ***********************************************
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bettyg
Unregistered
posted
i see you posted 10 days ago and sici..... replied; i sent you 1 name tonight....
THAT'S ALL THE NAMES THERE ARE!~ ------------------------------
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and go to their Doctor Referral page. They might have some other names.
Or try to get into NYC if you at all can. You're in such bad shape, you have to go where ever it is reasonable!
Good luck,
James
Posts: 872 | From New York City | Registered: Jun 2008
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IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
I wish I could help you. I think a lot of your symptoms possibly point to Lyme.
I have hair loss, and a long, strange dent in my skull that came from nowhere... I only noticed it a couple months ago.
I get a red itching area on the upper part of my finger... it turns red and itches and gets a little puffy and then goes away. On the other hand I get little itchy bumps that come up along one finger. It goes away in a few days and leaves dry skin patch in it's place.
I don't know much about the thin skin... mine isn't as bad as yours. But from the time I was a teen my face has had really thin skin and you could see the blood vessles around my mouth very easily.
I know you don't have a diagnosis or have seen an LLMD yet, but possibly you can at least start a Salt/C protocol or something?
*hugs* hang in there
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
The bone loss makes me wonder about your pituitary gland too.
Infections, injury, etc. can cause your pituitary gland not to function.
If you can, make an appointment with an endocrinologist.
Low hormone levels, especially HGH can overlap with Lyme symptoms.
Let us know how you're doing.
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6161 | From Columbus, GA | Registered: Jul 2004
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
The swelling, thin skin, wrinkles, livedo and patchy eczema you describe sound very similar to what I experience. Some photos: http://lymememorial.org/Melanie_4_09.htm
You state that you have had negative Western Blot tests. Were they done at IgeneX labs? Could you post the results, please?
Posts: 7052 | From Colorado | Registered: Mar 2003
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posted
My daughter and I both were well until we had neck fusions. BAM!!! It woke up Lyme.
We were involved in a car accident years before but x-rays didn't show extensive neck damage yet we suffered years of immense pain so we thought surgery was our answer. Wrong.
After my first fusion I became acutely ill and did not heal, it had to be repeated a year later and both recoveries were awful.
My daughter did better with her surgery but she had youth to her credit but still came down sick afterwards with lyme.
We have both been through the skin atrophy, edema, acne, scalp itching, and wore out joints.
I have Psoriatic Arthritis and Ankylosing Spondylitis. Hers is more Rheumatoid.
My daughter is on ABX and doing well. I'm waiting to see how my rheumatologist treats lyme since I am on Enbrel and other meds.
If you don't have pain meds or are allergic to them ask your doctor for some phenergan belly-jelly, it may help you through the rough times or sleep at night. It has been a lifesaver for me.
Don't give up hope, tomorrow could be a much better day. We'll pray that it is, karmaa55.
{{Blessings}} Lady
Posts: 245 | From Texas | Registered: Jul 2009
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posted
You are right about surgery being a trauma that can trigger Lyme flare-ups that were previously dormant. That happened to me after I had four orthopedic surgeries in one year (spine, shoulder, shoulder again, wrist).
My neuro Lyme took off like a rocket after the surgeries. My feeling is that surgery on a person with Lyme is like disturbing a hornet's nest. Chances are you had spirochete biofilm colonies in the joints operated on. All the cutting and digging caused the dormant spirochetes to
mobilize and run rampant. And to make matters worse, Borrelia LOVES scar tissue, so they hang out in your post-op surgical scars,
causing alot of post-op stiffness.
Itching is also a major Lyme symptom.
I also have what I believe are two Acrodermatitis Chronica Atrophicans lesions on my leg. Very thin skin where you can see the blood vessels.
My sister, who just got a positive Lyme IgG from IGENEX has major skin-crawling sensations, altho I do not, except for occasionally inside my ear.
Your symptoms scream LYME to me. Hope you get hooked-up with a good Lyme doc.
I'm in CT. If you want to travel to Bpt, CT, send me a private message and I'll give you the name of my doc. His fees are reasonable and he follows Burrascano protocols.
Hang in there. Help is on the way!!!!!
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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![[Smile]](smile.gif)
- I am having all of the norm symptoms of Lyme plus neuro Lyme - some for 4 years and then in June 08 after 2 spinal fusions, I started getting much more and worse symptoms including all neuro ones 8 months post surgery. ![[confused]](graemlins/confused.gif)
![[loco]](graemlins/loco.gif)
Best of health and wishes to all of you.
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