posted
My thoughts are with you Melanie. I hope you are doing much better today
Posts: 261 | From Piedmont | Registered: May 2008
| IP: Logged |
Alv
Unregistered
posted
Melanie! I am chiming in again!
In my eksperince Edema comes with bart ( activated ) and the pimples around the fronthead around your neck even in the chest right in the middle and the belly button pain ( very weird pain ) has to do with the activated of RICKETSIA( in my case TYPHY).
Bartonella is also a ricketsia ..read GOGGLE.HH and MINO might be an option to help you here.( agan I am just sharing my opinion from my own eksperince -and I do not recomend ANYONE to treat ON my opinion -please ask your doctor).
I treated RMSF but seems that I have another Wolhynia_fever that somehow helps the filiary worms to survive.Filiary worms ( present on ticks) also cause bloackages of the lymphatic system .
I am not a doctor I am just sharing with you what I have found and could feet in your case .My bart finally is under controll and edema is gone but the pimples EXACTLY as your are still there.I react tremendously on filiary worms frequencies and THE RICKETSIA.
Found a study of correliation and the presence of both when you find one of those.
Hope you read between lines.MINO and HH have helped me BEFORE.Treating Filiary worms is another THING( if you have adults they will reproduce) but mino will treat them as well ( do some more search on filiary worms as present on ticks and how they efect lymphatic systmem) .
Cleaning the parasites should be MORE in my opinion important than treating LYME.It is the first step and JUST one ROUND of Humaworm would do nothing( well will help) .I have been 3 years non stop and now I can say I am almost DONE!
Maintanace will be part of the rest of my life at least 2 times a year.Cleaning your COLON, parasites, kidney and liver should be your priority to continue any further the antibiotics route.HERBS will help to reduce many other things that WE DO NOT EVEN have a name YET .
I have done other type of treatments so far.If you can find a RIFE and test with the frequencies
For what I mentioned it will save you so much frustration.
And if you find somebody to test you many things I am afraid that you will find more than you think you have.ALL of us that chase that route FOUND this to be true!!!!!
The list GOT longer and longer and is not JUST LYME or one or two infections in it.Hope you can find somebody that does chase Dr K metods to keep testing you .
Finding what else is in there and knowing more about your body is going to help you finding the right protocoll that FITS your NEEDS .
If you do not cover them all they will take turns and you might be not covering them in the protocoll or continue to take somthing that is not needed for the moment ( as your bug is not the most activated one at that time ) and you will feel worst instead of getting better.
My bart is hanging now only at my hands and my feets ( have had them all my life swolled up ) .Every time that used to flare I have had trouble with my shoes that will change a size.
Also some of the PIMPLES might be detoxing but in my case are consistant with both bugs and detox.
lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Melanie, I hope you are better. I do not know about the bumps..My lymies were more like boils. I think the support group leader has had some of this with Bart.
If you find out about the hands and eye issues, let me know. I have them..Well and many years of age more than you so mine may be age related. lmt
Posts: 2360 | From SE PA | Registered: Mar 2004
| IP: Logged |
posted
Melanie, Had tried a few minutes ago to PM you.Got the reply "Mailbox Full". If you get a chance,PM me. I have some info that may or may not apply to you..Joe
Posts: 249 | From Northern NJ | Registered: Jul 2005
| IP: Logged |
Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
I'm so sorry, I just can't reply to everyone right now... I am actually pretty upset and frightened. I just noticed that my hand knuckles are turning colors. This only happened in the last hour.
We are pretty certain this is ACA. And if so, it is progressing rapidly. I'll try to confirm the diagnosis at my appt. tomorrow.
Posts: 7052 | From Colorado | Registered: Mar 2003
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Well I just ate some good catfish with the local town cop down on the boondocks.
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Melanie,
I have/had the sores on scalp. Alv is correct about the parasites and Filarial Worms. My hands looked exactly like and much worse than yours.
They are much better as I am getting rid of the parasites. Underneath the scabs are parasites. These parasites and worms are sitting in the small intestine and migrate to the scalp and the lymphatic system.
Burgdorfer found Filarial worms in the ticks. I have had EXACTLY what is in these pictures come out of me. People with Lyme are full of parasites/worms,
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
| IP: Logged |
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
so sorry Mel Heard lemon juice was a good natural directic. (((healing hugs)))
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
| IP: Logged |
Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
I just want to say a huge thank you to each of you! I honestly have no idea what I would do without all of the help provided here.
Although physically, I still feel like I am falling apart... mentally, I am much better now. I've just finished preparing info for my apt. in the morning, and you have all provided such excellent reference material to use.
After so many years of dealing with TBDs... I still get disturbed when new stuff occurs. So, thank you for helping me with this, and a very special thanks to my friend and mentor, TC.
I don't have it in me right now to reply individually, but will update tomorrow.
Much love and appreciation, Melanie
(PS...I can always be reached through the memorial web email if my box is full here.)
Posts: 7052 | From Colorado | Registered: Mar 2003
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Glad to see you are a bit better. That's so nice!
But the big question is... what we all want to know...
posted
The pictures of your feet and mine are remarkably similar. I'm beset with very bad edema also. It's awful. Haven't worn a skirt or dress the last few years, as a result.
My ankles and lower legs are badly discolored usually with brownish blotches, as well as being swollen like yours. (I'm on coumadin, so that issue may be related to the medication).
I'm so sorry you're having such trouble. If you discover a a resolution to this problem, please share your findings.
All very best wishes.
Posts: 45 | From Northeast | Registered: May 2001
| IP: Logged |
minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
Melanie, one of our LD group members has the rash, tremors, and fever, but no edema. Her docs feel these sx are is definitely caused by bartonella (she also has babesia and Bb).
In the research I've read (mostly vet papers on cats and dogs), edema (particularly pulmonary and optical) is associated with bartonella. But there are a lot of reasons for edema, so that's in the FWIW department.
I have to keep refighting bartonella, too, although my physical sx have not been as severe as yours. I'm see-sawing between bart problems (for me, major brain fog) and lyme problems (for me, major brain fog). Let no one say I'm inconsistant...
I know one from the other based on the meds that work for me.
I did the whole Zhang protocol, including HH, and while it worked for a while (several months) it wasn't the final answer. What has worked has been changing meds regularly and adding in various supportive supplements-- which seem to have a will of their own when it comes to deciding if they want to help me out or not.
For recovering from the edema -- I've found lymphatic drainage very helpful when your body can't get its own lymph system to work properly, along with detox protocols like green clay, apple pectin, and charcoal.
Make sure you work with someone who's properly trained (someone who took classes, rather than someone who read a book on it once) and who will go slow, because manual lymphatic drainage can really move toxic stuff around and you can end up feeling really ill if it's not done carefully.
So sorry you're going through such a hard and scary time -- and this must be the busy season for you, no? I can't help thinking that there might be a connection between the time of year and this occurance -- spring allergies? stress? intestinal parasite mating season?
(One of our local group members has a wide variety of confirmed intestinal parasites. She is having some amazing results with her intestinal parasite treatment, but she's definitely feeling worse now than she was a month ago although she's been on the treatment for a while).
Thinking of you and wishing you the best.
-------------------- ********************* RECIDITE, PLEBES! Gero rem imperialem! (Stand aside plebians! I am on imperial business.)
Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Well, it was very rushed at the appointment today. I only had 30 minutes to go over everything... or to TRY to go over everything, and of course, that didn't happen.
I was having an asthmatic episode in the office, so the doctor was the most concerned about my respiratory stuff. She wants me to go to a Pulmonary specialist... but that isn't going to happen.
My blood pressure was 150/100 and pulse was 120. My tremors were so bad that I could barely touch my own nose...much less her finger. My throat is angry red, but my lungs sound clear! Very good news!
I have also gained another 5 pounds in fluid overnight. Just when things were starting to go back to normal.
Anyway, we didn't even have time to discuss the increasing cramps or the other 100 symptoms on my list. She did think that my painful cysts were most likely the same as what fibromyalgia patients get, but she didnt even feel them, so, I'm not too sure about that.
My adrenal test results did come in, but we didn't have time to discuss that either. I did get a copy and they are pretty skewed, although I am not sure what to make of them just yet.
So, I have new prescriptions to fill for the asthma stuff and sleeping stuff. She wants my ER records from 2006 when I pretty much presented with the same symptoms.
She said she was well versed on ACA, but we didn't even get to talk about treating that except that I may need to do the IM Bicillin plan again... when I can afford it.
I did tell her that I feel my Bart symptoms are flaring now... but she feels that the Babs still needs more work. So, I get next week off of Mepron and then go another month before my next apt.
I'm a little frustrated, but that could well be the 3 week herx talking. I know I can't expect the doctor to spend more time than allocated on me, and she was running late already. I did keep her overtime on my last 2 appointments, so I can't be too disappointed at today's time table. I do think she is a wonderful LLMD.
So that is all I have to report for now. I'm really exhausted and am going to lay down for awhile. Thanks so much to each of you! I'll come back a bit later to reply more specifically.
Melanie
Posts: 7052 | From Colorado | Registered: Mar 2003
| IP: Logged |
Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
So, now that I have had time to reflect on everything and go over my adrenal results... I realize that my LLMD did exactly as she should have.
She addressed the most acute issue first... which was me having an asthma attack! She did a thorough exam of my lungs, and got right to business asking questions about the asthma so she could prescribe what was needed.
Just because I wasn't worried about it, didn't mean that it should not have been taken care of right there and then. She is SO good!
Anyway, I think my adrenal results explain a great deal of my current issues. The 4 Free Cortisol levels are all pretty elevated, both of the Insulin tests and the Total Salivary SIgA are depressed. The Gliandin Ab SIgA is borderline. The only things that are normal are the DHEA and the Progesterone.
So, what all that means is that I am making way too much Cortisol which is the 'adrenaline of the fight or flight syndrome'. This is what is most likely revving up my pulse and blood pressure, breaking down my muscle tissue, suppressing my immune system and causing the horrid insomnia.
It is also what is most likely causing my tremors and sudden crashes in the afternoons where I just have to stop and lay down. The low insulin begins to create a hypoglycemic reaction, and because I do not really eat unless I have to take meds (I'm supposed to be 'grazing')... my blood sugars are most likely not too happy. (Thank you TC for helping me to figure this out!)
I also remembered that she DID say the thing about the cysts being like Fibro cysts. After reviewing MY notes... that is exactly where I found my information on Dercum's Disease... on a Fibro site! She IS good!
She also said the Lasix wouldn't help my type of Edema... whatever that means. But because I do have edema pretty regularly, this really wasn't a huge concern for today.
So, after reflecting on all the we DID discuss, and figuring out the adrenal results and taking a 2 hour nap... I am a pretty happy camper right now!
Miss Minou, Thank you for your input, I always value it so much! Yes, the Bart stuff is acting up and we will have to go after that one soon. I honestly feel that my cat Bob and I keep giving back and forth to each other, as he is getting sick again too. So, it is back to the vet for him and back on Doxy. Maybe this time will take care of it.
Yes, I actually had a lymph massage once while in Costa Rica. BIG mistake! I was so bad after that it took a very long time to recover! Major toxin overload and I was already in a particularly toxic place. So, I tend to shy away from that suggestion, although I do realize that with a trained person who I could actually communicate with, I might have a better reaction.
Yes, this IS the busy season, and I have not been able to work much in the last three months. Thank Heavens I have an incredibly supporting team that I work with. They let me do most of it from home on my own schedule as much or as little as I want. Who could possibly ask for more? BTW, today was the final inspection for a project I have been working on for almost a year, and we passed! YIPPEE! Talk about stress reduction right there! Love and miss you.
TickSick, I am so sorry to know that you are dealing with this too. Yes, as soon as I find out, if I ever do, I will certainly share that information. Take care of you!
Miss Dana, I haven't seen you in so long. Thank you for reminding me to drink lemon water. I do tend to forget the basics at times. Hope you are well?
Hey Gael, yes, I am certain that many of us are dealing with so many things yet to even be named. Thank you for your input and I do hope your issues clear soon.
Hi Roz, that was a great link for more images, Thank you so much! I'm also sorry to know that you are dealing with this as well. I think it effects many more of us than suspected. I looked over both of my WB results and in 2003, I showed an indefinite IgM on 30. But in 2006, it was negative. So, I suppose that if you subscribe to the notion that all indefinites are actually positive, then the answer would be yes. Do you have a theory about band 30 and ACA? If so, I would love to hear it.
jklynd, I did get your email, but am afraid I am very backed up in reading emails right now. But I do appreciate you contacting me and will get back to you soon, OK?
LM2, I still think the eyes and hands are ACA related. Can't really prove it yet, but am determined to get to the bottom of this.
Ticked, thank you so much for the kind thoughts!
Alv, I am listening, I promise... all in good time. And thank you for sharing, I do appreciate your experience!
hshbmom, YES, I actually got then done a day early this year! That was another stress inducer until finished!
Thanks so much again to each of you. I'm feeling very hopeful now.
Melanie
Posts: 7052 | From Colorado | Registered: Mar 2003
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
That's weird. I just got a fax from your doctor!
(If I keep laughing this hard I am going to choke on those cashews.)
Yes, I got a fax from YOUR doctor! I DID!!!
The doc said to pass this note along to you.
Dear Melanie,
It was nice seeing you today, however, I'm afraid I am going to have to cancel your next scheduled appointment.
After seeing you today, I closed the office and went to town and purchased a pair of boots and a wilderness outfit so I could go on a hunting trip.
Can you please tell TC exactly where you were when you were bitten by that tick so she can let me know?
I am going to not only kill that stinking tick, but all its little tick family and friends too!
When I have bagged it, I plan to take it to the taxidermist and have it mounted.
Ok, after looking at your photos, here's what I think:
You and I were separated at birth.
I have NEVER come across anyone else with the same skin issues on the hands. And these problems surfaced for me when I got ill with Lyme, et. al.
I also have a severe case of Raynaud's Phenomenon where my hands (and sometimes feet) turn all kinds of colors from pink, to lobster red, to white, to blue, to purple.
I also have Livedo Reticularis, that all over the body mottled looking rash underneath the skin.
LLMD's have said Bart, Bart, Bart.
I've also got edema issues. They definitely got worse when off Bart treatment. I honestly don't know how much is from Lyme/Babs or whatever else tick borne might be going on is contributing to all this.
I've gotten so I don't think about it much because I have so many other symptoms that make me feel so sick and in severe pain.
But I am always reminded of my damn hands whenever I see a doctor. My sleep doctor grabbed my hands recently in wonder. So did the Gyn and the primary care doc and even the dentist.
I can't get out much, but when I do, I invariably will have people rush up to me at the pharmacy for instance and ask me if I was alright, grabbing my hands and say, "Do you need a medic? Here, sit down!" lol
That snakeskin look on the hands and feet is impossible to get rid of for me. No amount of exfoliation with sea salt scrubs and moisturizing gets rid of it for me.
It can feel demoralizing sometimes. The worst was when a few years ago, I decided I wanted to stop in a jewelry store with my husband and try on rings and bracelets -- just to try and feel normal for a change and pretend I wasn't sick.
'Course there was no intention on buying a thing because Lyme and being sick sucks up money -- who has money for jewelry with Lyme? lol
But, I went to the counter and asked to try on the first thing I saw -- a beautiful bracelet. The lady asked for my hand so she could put it on and she recoiled at the site of my red/purple hands. "Oh my God! Your hands are SO red! Are you sick?!! Do you feel alright!" all of these exclamations were made at the top of her voice.
To which everyone else in the store turned their heads to look at me and my hands. Needless to say, I burst into tears and walked out of the store.
So much for pretending to be normal. lol
I've also got the ugliest feet on the planet. The bottoms of my feet are so rough and calloused and nothing gets rid of it either. I'm convinced that the same thing that is causing my other skin issues is what's causing the foot problem.
Interestingly, when I went on a 3 week course of Alinia to give it a try, the bottoms of my feet peeled off in sheets and the skin there looked normal for the first time in years. I had to stop Alinia though because I developed allergic-type skin reactions to it. But I theorized that perhaps the Alinia was getting rid of a ride-along parasite or something. Who knows?
I've been tested up the whazoo and done various treatments for parasites anyway.
It gets really tiresome trying to play detective, I know.
Oh, another thing that will send me into an edema episode is yeast overgrowth. I have systemic candida and if I get behind with antifungals, I'm guaranteed a whopping poundage gain.
And my adrenal glands are quite broken and for me, that has contributed to stodgy appearance and edema.
Anyway, for the edema and inflammation, I'm taking systemic enzymes. It's sort of temporary band-aid therapy until I can somehow get a resolution. I use Repair Guard by Perque, Inflammaquell by Researched Nutritionals, and also an additional Quercitin/Bromelain combo from Whole Foods. All at docs suggestion.
Resuming Bactrim and Mepron/Zith to target Bart/Babs has helped with some of the extra swelling so far. But I feel like the broad side of a barn.
On the Cortisol issue, just thought I'd mention -- my doc suggested trying something called Cortisol Manager. It's an herbal blend designed to help stabilize cortisol levels. I haven't tried it yet for fear of a possible magnolia allergy. Even though I have low cortisol and am taking Cortef, this product can still be used to try and stabilize. I know it's used for folks with too high Cortisol.
Anyway, sorry to be so long-winded. I just got kind of excited seeing someone else with such similar hand issues.
Hugs, Fuzzy
Posts: 503 | From Maryland | Registered: Oct 2007
| IP: Logged |
Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Oh Fuzzy, my heart so goes out to you. I am very sorry that people have been so oblivious about your feelings when reacting to your hands.
Yes, it does get tiresome playing detective. At times I am just bone weary of the whole thing. AT those times, I allow myself to feel sorry for myself a day or two, but then I get weary of that as well.
Thank you so much for sharing such intimate details of your journey and also for the great suggestions of how you have dealt with things. Take good care of you. M
Posts: 7052 | From Colorado | Registered: Mar 2003
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Big Grin]](biggrin.gif)
![[Frown]](frown.gif)
Heard lemon juice was a good natural directic.![[lol]](graemlins/lol.gif)
![[Smile]](smile.gif)
My throat is angry red, but my lungs sound clear! Very good news!
![[Razz]](tongue.gif)
Printer-friendly view of this topic