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» LymeNet Flash » Questions and Discussion » Medical Questions » These are not my feet...these are not my hands...Update, link to photos...

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Author Topic: These are not my feet...these are not my hands...Update, link to photos...
Melanie Reber
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I am SO tired of this persisting EDEMA!

I've dealt with it all through my 6 years of treatment, but it always comes and goes just like everything else.

Recently, it is staying put and increasing. I've never had it going up my legs and in my knees or in my hands before now, and I just feel so bloated and yuck!

I already do what I can OTC for this, like diuretic foods, lots of water, raising my legs, etc. I have already checked all meds that I am on, and none mention edema as a side effect.

Does anyone have any suggestions or new insights for these body parts that are NOT mine?

Thanks so much in advance,
M

[ 04-13-2009, 08:52 PM: Message edited by: Melanie Reber ]

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TadichGrill
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Red root tincture. You can google it or read about it in Healing Lyme by Stephen Buhner. You can buy it in a tincture or in tab form. I have a friend who is a herbalist who makes her own by digging up the root and mixing it with organic grape alcohol. I plan to try hers tomorrow.

Red root helps to clear the lymph and it does wonders for my kidneys.

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bettyg
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mel, you sound like my late dad who had GOUT, uric acid, bad and effected all those areas.

prednisone he'd be put on! he too was UNDIAGNOSED LYME for 80 years.

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Melanie Reber
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Good morning TadichGrill and Betty,

Thank you both for the replies, I do appreciate you! Tad, That sounds like something that I will most likely look into - Thank you!

Betty, yes, I have had gout symptoms in the past, but seem to have gotten past them. However, this has intrigued me enough to do some further research... and it may actually answer an unknown symptom that I have been experiencing for a few years now.

My right leg, the same one that did exhibit gout-like symptoms, has turned into what I call 'my dead leg'. I asked my former LLMD to examine it at my last apt. with him 2 years ago. And on examination, he proclaimed that he felt 'granular tissue'. Of course...he had no explanation or recommendation.

After reading more on gout and learning that it can cause tophus tissue (granules of uric acid deposits in the surrounding soft tissue)...I am now wondering IF this is related to my 'dead leg'? very interesting, indeed - THANK YOU!

I have made an extra doc apt. for next week so we can move forward on these mystery symptoms a bit faster. I'll be sure to take in information about this for her review. [Smile]

Melanie

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Melanie Reber
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Alright...

so overnight I have gained 6 pounds of extra fluid. And now am sporting a fever of 101.3 (my 'normal' is 97.ish)

My legs and arms actually hurt, like the skin and muscle are tearing. Is that even possible?

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glm1111
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Melanie,

Anything going on in your colon? Like constipation, mucus etc. Water retention can be a symptom of parasites.

Please check out

www.humaworm.com

and go to the symptom list. Remember the old saying, "Disease Starts In The Colin"

Gael

--------------------
PARASITES/WORMS ARE NOW
RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS*

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Parisa
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Time to go to Urgent Care? I know it's a waste of time but you might need to go to rule out some things. Especially if the fever persists.
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Melanie Reber
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Thanks Gael,

Actually my plumbing is working fine...and while I don't make a habit of inspecting what appears, I have not noticed any unusual changes.

Yes, I am sure that I have parasites. Babesia of course, and something else that has yet to be determined is causing painful abdominal cysts.

I did do part of a course of Humaworm last summer. Just couldn't finish it for some reason.

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Melanie Reber
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Thanks Parisa,

I know you mean well...but I am NOT going to any ER or Urgent care ever again! It is a waste of time and money for me. I just need to try to get this swelling under control, and the fever and the coughing and then, I will be fine.

I found some Lasix and took that, but then thought I might take some Tylenol too to knock down the temp, but it interacts with the Lasix... so, maybe I just need to lay down with a cold washcloth for a bit?

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feelfit
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Melanie,

Yeesh, I would be kinda concerned about that 6 pounds overnight.....Parisa has a pretty good idea....please follow through.

Feelfit

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Melanie Reber
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I understand the concern...truly I do. I would say the same to anyone else. BUT, you have to understand I have no insurance and I have had horrid experiences with ERs.

Maybe its the meds?

Mepron
Zith
Plaquenil
Elavil
Intal
SIngular
Albuterol

But I always do a thorough check with all meds and can't find edema as any side effect?

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micul
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Well, besides drinking plenty of good quality water, I think that exercise is one of the best remedies for resolving edema. It helps to prevent it in the first place when done regularly.

Walking and biking are good. I would also suggest using a rebounder as well. You could probably pick a used one up for $10 on www.craigslist.com They are great for getting the lymph system moving.

Edema Link

--------------------
You're only a failure when you stop trying.

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Melanie Reber
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My doc does not want me to raise my heartrate...it is already tachy. So any exercise that increases the rate is out for now. I've been trying to do some stretching yoga, but that is about all I am allowed. Thanks for the link Micul. I'll look it over now.
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Carol in PA
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Did the edema get worse with any new meds you started?

One reason for the edema might be the lymph is not draining as well.
The rebounder is supposed to be very good for this.

Carol

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Melanie Reber
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I just began these meds in the last 2 weeks, so it could be? However, I am prone to edema, but this is ridiculous! I even have swollen bags under my eyes for Goodness sake.

Yes, I know I have issues with detoxing. And I actually don't feel too bad on the new meds,,,just these few problems.

Carol, I am not supposed to exercise right now...at all.

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Alv
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ohhh this sounds like bart...to me..that causes edema...every time I go back on HH and treat bart I start shrinking...

Also my hands and finger do not swollow up....I do not see anything that really hit bart in your case...yes azithr but if you have an activated bart from head to toe...I doubt it

ALSO bart loves to cause issues with the BLADER besides lyme...

I have treated bart for more than 19 months...still love to come and I go after it every time.By the way -bart causes bags under eyes....PUFFY eyes..also besides your lymphatis system and Filiary worm that can go with it also..this of all this and how many much have you treated any of this.

Oh by the way 101 BART causes that fever...is raising its ugly head and your body is trying to tell you about that ..filiary worms do not cause fever...all symtoms can be bart with or without the rest but FOR ME -direct to BART .

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Carol in PA
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If the heart cannot pump strongly enough, you may get edema of the lower extremities.

You'd also be likely to have a "wet" cough, as the blood would back up in the lungs.

Also, if the kidneys were not working well, you may have edema.

The elevated temperature may be due to an infection?

I'm "thinking out loud" here.

Carol

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Melanie Reber
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Hey Alv,
Yes, my Bart IS flaring badly right now (new striations, etc.) and we will address it again after we get the Babs back under control. I did Bart treatment for a very long time a few years ago...IV Lev and many orals and thought I had it beat...guess I was wrong.

Either that...

or I was reinfected which is a strong possibility as my Cat is a carrier and got himself into a flea infestation when we moved here. All heck broke loose with him after that.

Yes carol, I am a bit concerned about the lingering cough even with three asthma meds on board. I also have back right flank pain.

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gwenb
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I have a big imbalance between sodium and potassium, which I find causes edema. Cutting out high sodium, acidic, sugary and high starch food makes a tremendous difference. You also need to supplement with potassium naturally, as it could cause heart problems otherwise.

Fresh fruits and veggies are the way to go - especially mangos, dandelion greens, parsley, dried apricots etc which are all high in potassium. I find when I go on a fruit/vegetable cleanse I will lose 7-10 pounds of water in 3 days. Works like a charm every time.

Gwen

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Melanie Reber
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That is very interesting Gwen, because I just read in Mucil's link above...

"Salt causes body to retain water, so avoid salty food. Eat food that has low carbohydrate in it, because carbohydrate has more water content. Eat protein and fat rich food. Avoid fruits and vegetables because they increase the fluid level in the body. Eat low-sodium diet because medicines will be ineffective if you eat high-sodium diet."

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Alv
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waiting to treat bart...WRONG

You need to put yourself right now on HH capsules.

LEVAQUIN did not kill it for me...I have been 19 months ( and over 12 months I did 3 of levaquin ) ..it comes back.

Depends on how long you have had it.I would JUMP right now ON HH capsules...otherwise you are going to be in trouble.

I have been down this road for many times.Chase BABS family -BART CAME UP OVER NIGHT.My entire body face lips every thing was twitching.No KIDDING.

Than WHEN BART Goes down ..babs Protozoa strains GO CRAZY.Goes in circle until you really get this down and no body knows how many times...it cane take many time treatment until the IMMUNE takes over.

By the way you can also add right NOW RIZOLS MY that has artemisin oil in it and can help with babs..is your choice...

It works on bart very well..and you need to increase the dosage over 60 drops total per day .

If the striations are comming out -THAT SCREAMING BART.You blood is cloged right now..to much die off and another one reproducing WAY FAST.

No joke with it but get to RIZOL MY or HH and try to detox..to keep up with the DIE OFF.

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TadichGrill
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I had a friend that did lots of Levaquin and thought they licked bart and so did their LLMD yet their bart returned with no cat or fleas around.
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bettyg
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quote:
Originally posted by Melanie Reber:

My doc does not want me to raise my heartrate...it is already tachy.

you mentioned darkness under eyes; allergist said that was caused by ALLERGIES the other day...


mel, when you mentioned 6 lbs. overnight; it was my dad all over again! in 2 days he gained 20 lbs. of FLUID AROUND THE HEART/LUNG area.

they used lasix i believe and were taking fluids out of him as fast as could be.

perhaps the RNs we have here could better describe what was done; been many years ago, and with my neuro lyme of 39 years .. i'm lucky to remember that much.

good luck. any type of a FREE CLINIC in your area? we have one locally; once a week it's open.

our local clinic now is open from 5-9 pm for those families who can't take time off from work, or for emergencies vs. high $$$ of ERS.

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Tincup
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If this was anyone else I would say...

If you aren't going to the ER or walk in clinic... and you should....

Then stop all meds till you see the doctor.

Take some ibuprofen after stopping the meds to try and reduce the fever, swelling and pain.

But then I am not a doctor and I ain't your momma... and I ain't the boss of you.

So I can only HOPE you will do the right thing, you block head you!

But we do love you!

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Melanie Reber
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Oh TC, You know I love you and respect your wisdom...

But, I just can't stop meds AGAIN! I have stopped and started so many times already in the last 2 1/2 months. If I keep doing that, I will never progress.

The swelling has gone down a tad overnight and my temp is down to 99.8.

I realize that all my answers here sound like I am only blocking all the wonderful suggestions, and I really am not trying to do that. I so appreciate each of you and your input!

I'll put in another call to the doc today...I just hate to be a pest with a new doc. Perhaps they can get me in sooner than next Friday.

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lymemomtooo
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Melanie, Good luck. This sounds a tab bit scary to me.

I always have to deal with bladder and kidney issues so always am fighting some fluid. Have been on the pricy meds from the urologist and still am not where normal should be..

But when I take some B vitamins there is magic.

Also my lymie fights TBD's and diabetes and they feed on each other. Last year she was in respiratory distress and also had a major heart issue and was in ICU for 3 days..The diabetes ended up being the worse player but a potassium deficiency was right behind..

Also my mother deals with congestive heart failure. Currently we are doing battle. Along with lasix, she is to get her feet up..HIGH...

The rebounder is a good idea. You do not have to do if fast or attempt to get your heart rate up..Just walk in place on it for a minute at a time and go slow. It might be helpful.

Detox is important. You know that.. Fresh lemon in water..

Get well Mel...lmt

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TerryK
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Hi Mel,

Mepron has angioedema and cough listed as side effects so I would look at that first.
http://us.gsk.com/products/assets/us_mepron.pdf

Angioedema can be serious since your throat can swell closed. Swelling in the face, hands and feet is not unusual with angioedema.

I don't know if this is what is happening to you but if you develop difficulty breathing then it may well be an emergency.
http://www.nlm.nih.gov/medlineplus/ency/article/000846.htm

Medications used to treat angioedema include:

Antihistamines
Anti-inflammatory medicines (corticosteroids)
Cimetidine (Tagamet)
Epinephrine
Terbutaline (a bronchodilator)
If the person has trouble breathing, seek immediate medical help.

Please have anti-histamines available as that would be very helpful in an emergency.


You might consider going off the mepron if your situation gets any worse.

I avoid ibuprofen because it can cause more edema. Overall severe edema has been one of my worst symptoms. Mine comes and then fluctuates for days or weeks but usually does not go.

My weight gain fluctuates between 3-7 lbs in one day. Only once I actually gained 13 lbs in one day. Yes, your tissues can hurt when you gain a lot of fluid. Several doctors have mentioned that my tissues are friable and tear easily. Even my gum tissue as noted by several dentists.

I was studied for edema and orthostatic hypotension at a research hospital in of all places, NY. This was decades before I knew I had lyme. They called it "idiopathic". In other words, they couldn't figure out what it was. My mother and both of my sisters have it too and of course they are sick like I am - with lyme and co-infection symptoms.

Hope you feel better very soon. Please let us know how you are doing. We worry....

Terry

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njlymemom
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Melanie, scary symptoms. Cough is a side effect of mepron.

what TerryK suggests about the antihistimines sounds like good advice.

i know how you feel about the ER...at least call the doctor

hope something works soon for you...best wishes

--------------------
This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.


The shortest way to do many things is to do only one thing at a time.

cb

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TerryK
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Forgot to mention that fever is also listed as a side effect of mepron.

Terry

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Melanie Reber
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Yes, I just saw that Terry. Thank you so much. I am still reading through this, but have to put it aside for now to do some work.

I'll try to come back in a few hours to reply to the rest of you... but know that I am very appreciative!!!

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Tincup
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You can't change the wind, but you can adjust the sail.

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Melanie Reber
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Thanks so Much LM2, I'm so sorry that you are currently dealing will illness in all three generations. That must be difficult. My doc actually wanted me to take B6 and B complex but I fail to remember them. I'll set them out now. Thanks also for the slow rebounder suggestion. I actually did purchase one a few years ago but was too ill to use it so gave it away to a friend. [Smile]

Terry, I finally finished reading the Mepron PDF, and yes, it does mention many of my current issues as a side effect, so... I am just going to pass all of this off as Mepron madness. THANK YOU! I'm so sorry that edema plagues you too.

Thank you NJmom, yes, I do have some dissolving Benedril strips from my IM Bicillin days handy just in case. Although, if there was an emergency- one can NOT get the package open!

Oh TC...what can I say? You know me better than I know myself at times. THANK YOU for always being here for me.

So... the edema has subsided somewhat (3 pounds worth), although I am still rather puffy everywhere, I feel much less explosive. The fever is down as well to 99.

Thanks so much to each of you. Your combined experiences are truly invaluable! M

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Pinelady
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Melanie how are your thyroid levels?

I wish I could send you some before and after pics of my husband.

He was over 300lbs and half of that was fluid.

I did a search and found a lot of people on Mepron have to replace thyroid.

Why I do not know. But something that could save you a lot of symptoms if it is contributing to the fluid.

--------------------
Suspected Lyme 07 Test neg One band migrating in IgG region
unable to identify.Igenex Jan.09IFA titer 1:40 IND
IgM neg pos
31 +++ 34 IND 39 IND 41 IND 83-93 +
DX:Neuroborreliosis

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Truthfinder
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Gosh, Melanie - I just did a quick Google search of 'Singulair edema' and Singulair CAN cause severe peripheral adema and angioedema...... I'm not sure it is common but it does happen! People have talked about it on blogs/forums, as well....

So, you may have TWO culprits working against you as far as meds go!

Hope this helps....

--------------------
Tracy
.... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�.

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maps
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Hi, sorry no input just gathering information, what are hh capsules.

Having a little bit of same problem.

regards
maps

--------------------
1999 CFS, 2002 CMV Myco pneumonia
1 year antibiotics on and off
2002 EBV, 2009 Positive Igenex Borellia and Babesia, Brain mri severe white matter disease
Monoclonal Gammopathy. On and off antibiotics since sept. March 9 started iv antibiotics

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Melanie Reber
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Hi Pinelady, Actually my thyroid IS messed up with high reverse T3. I am supposed to be taking meds, but am waiting for the adrenal results first. This is most certainly something I want to discuss at my upcoming apt...THANK YOU!

Hey Truthfinder, Wow...thanks so much for looking that up! It is actually past time for my Singular dose. I will certainly discuss that too with my doc on Friday!

Alv, sorry I didn't mean to skip over your reply...I just missed it somehow yesterday. While I so appreciate your input with your experiences... and with all due respect... I am not sure it is wise to ask anyone to change their protocol. You really don't have my entire medical history or clinical picture.

And while I AM taking your suggestions into consideration, and sgree with you on the very insidious nature of Babs and Bart when combined... I have to trust MY doc to work with me to come up with a plan that we both feel comfortable with.

There are reasons for what we are trying to do... the Babs symptoms far outweigh the Bart ones, and we both feel that we need to address those first. Yes, this may change... but for now, that is the plan.

Please don't misunderstand me... I am very appreciative of your comments, I only wanted to explain WHY we are doing what we are.

TadichGrill, yes Bart is one wicked bug!

Maps, I'm so sorry you are having this issue too. I do hope you can get it resolved soon. From what I understand... HH capsules are one of the herbs that Stephen Bruhner (sp) recommends. Perhaps Alv will come back to add more info for you?

Betty, Thanks so much for the suggestion of a free clinic. I really don't think there is one here, although I have seen a large van type thing parked in the local market lot every now and then. Yes, I do have severe ongoing allergies. The really odd thing is that after a year or more of having allergy attacks every few weeks and almost weekly toward the end... since I began ABX at the end of January, I have not had one attack! Things are definitely strange around here. [Wink]

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Alv
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HI Melanie!
I am here to share my opinion and I hope that people do not get me wrong and they need to change the meds.

I for instance was in HH again UP TO 20 pills a day to reduce myself the edema.

It was BART that was comming back and still have it in my exstremity ( feet , hands) and some a little left in the brain.

AGAIN nothing touched my bart like HH capsuels..But not all have been chasing this BUG as I do.( I am still dealing with protozoas) but when BART wakes up seems like everything gets worst...VISION , hearing ( etc) I have had a VERY HIGH load of bart comparing to others.

I doubt that bart goes away and I treated it for 19 months and still chase it now.I need this just for a couple of weeks.It came back after 4 months.Yes is lower but in 2 weeks started spreading very very fast and I do not want to let it get a hold of me.So I am chasing it while I need to do other treatments.

So my daughter.She was on cleanisng and she had parasites cleansers and many binders ( artemisin was in there ) and was no reason for her to gained 15 pounds in 24 hrs 1 month ago .She had stoped BART treatment 5 months ago.

Guess what ..while she was after some protozoas for 2 months ( rizol gama also) and parasites cleansing ...BART SHOWED UP OVERNIGHT.

There is no need for anybody to follow me .I am just sharing.HER TEST ( diferent kind, ART , biotensor , homepathic , and confirmed by rife bart frequencies ) SHOWED BART showed UP SO QUICLY .She had to use RIFE and OTHER things first but was FAST ...and to make sure we controll it put her on HH.She needed from 0 capsules to 15 HH right away.

Too much of coincidence...than the pufenes droped on her .EVEN her friends at school told her what hapened to HER THAT SHE GOT SO PUFFY over just a weekend !!!

48 hrs later she puffines left..so a few pounds...SO again I am sharing and make awarenes that this COULD be a reason but at the end YOU HAVe to make the decisions with your DOCTOR!!!

BECAUSE of my Eksperince ..MY LLMD is offering everybody HH as I have tried them and MY DAUGHTER had the chance to SHUT up BART in 3 months AS I PUT her IN HH last year ( 20 of them in day) while my LLMD put her in ANTIBIOTICS.

This antibiotics could not KILL MY BART for 16 months _HH put me in REMISSION in 3 months( and I have used them all -and in very high dosages CRAZY DOSAGES -that NONE HAS EKSPERIENCED HERE.

BUT you gota be brave to take that HIGH amount so with ARTEMISIN zhangs pill.I have been UP TO 15 a day to hit BABS strain.Now I am dealing with protozoas that need difernt treatment.

AGAIN I am just sharing my opinion as I followed a diferent direction on treating this and I have seen faster result than OTHERS( my llmd HAD to call me to find what else I WAS TAKING ) so can be used BY OTHERS .HH WORK ON BART BIG TIME .You do not need to change your protocoll...just add a few capsules..to not let it GO CRAZY while you treating others...but again is your decision and your doctors opinion .

MY DOCTORS ( all of them ) take my opinion in consideration and they follow my patterns ( you gotta be a very well patient to make the doctor use his full potency also ) .I have done my work more than regular patient.

So again I am trying to HELP and NOT FORCE anybody to use what I used !

For me is easier not to share but I thought I might be helping as I have been in too many trials and errors and I would offer the most honest best oinion that I have to others.I can not see people suffering any more as I have suffered enough myself.Hope you do not get my message WRONG!!!

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Melanie Reber
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"So again I am trying to HELP and NOT FORCE anybody to use what I used !

For me is easier not to share but I thought I might be helping as I have been in too many trials and errors and I would offer the most honest best oinion that I have to others.I can not see people suffering any more as I have suffered enough myself.Hope you do not get my message WRONG!!!"

Hey Alv,
yes, I understand that you are sharing your opinion based on your experience. And that is great! I am very appreciative and I am sure others are too!

Please, do not stop sharing...this is how we all learn. My only concern was that we need to make sure we don't self-medicate when we are trying to work WITH our LLMDs. It should always be a collaborative effort, otherwise, we may undermine what they feel is the best course for us.

Believe me, I have had to be my own doc MANY times for many years. It is so very taxing and confusing to try to do that while you are ill. But many have to.

I am finally in a place where I trust and have a very good working relationship with a very good doc, and it is so nice to be able to trust again.

I will ask about HH...who knows, perhaps she will think that is an excellent idea? [Smile]

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Melanie Reber
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Well... here is an update for those of you who have been concerned and so helpful.

The edema is down to where I can actually see my ankles again, and it doesn't hurt any longer! My hands are still quite puffy and I still feel bloated, but that is OK as long as there is no pain.

My fever persists, spiking several times a day. Currently at 99.4... but that isn't as bad as it was either, so I'm happy.

The cough too has decreased some. My current resting heartrate is around 80 (half what it was at my last doc apt.) And the flank pain has lessened. All good news!

But... I have now broken out with sores all along my neck, ears and hairline. These are NOT blemishes. There are dozens of them. My restroom time has increased significantly. SO much for that 'plumbing is fine' statement above. And though I realize that these asthma meds can increase tremor symptoms... I am now channeling Catherine Hepburn. [Smile]

I'm supposed to add in Artemisinin tomorrow. While I have taken this in the past, it really put me under really fast.

Soooo, while most things seem to be heading back to 'normal', others are not. I'm thinking that I am really doing some major killing, but am also just having difficulty eliminating the bad boys. Any feedback on that theory?

Thanks again in advance,
Melanie

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Parisa
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Glad to hear you are doing better. Are the sores painful or itchy?
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Melanie Reber
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Hi Parisa, No, they are not painful or itchy really. Not at all painful like the oral ulcers I developed a month ago.
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Hi,

what are HH Capsules? Thanks

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Melanie Reber
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Thanks for that information Tosho. I will have to read it more carefully when I am a bit less tired.

To Life, here is a link I found to Dr. Zang's site:
http://www.sinomedresearch.org/

Specifically re: HH:
HH Capsule: Used in combination with the Allicin capsule. This capsule has wide spectrum antimicrobial effects and can be used safely for long term treatments. HH is also anti-fungal and can reduce the risk of Candida infection from long term anti-microbial use.
http://www.steveclarknd.com/LymeDisease.htm

I'm sure there is better info out there, but because i am unfamiliar with this, I am not sure where.

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MY3BOYS
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well, you seem to present one very interesting, difficult clinical picture.

ok- one at a time- tyroid. decreased function common wiht lyme, thus low body temp. tyroid replacement effective to up body temp. when body temp goes up to "norm" ranges then possibility to run fever is improved. fever is body inate way of killing bacteria. cook em and kill em. so, running temp may be good thing for you?? just theory

b-12- pls dont just pull out of cabinet but take them as recommended by doc, esp with cardio issues.

edema- 6 lb in 1 day is VERY concerning. add hx of tachycardia and this screams congestive heart failure.

edema increasing to include eyes (peri-orbital) raises concerns for heart/lung/kidney function

would be good idea to keep daily weight log for next MD appt.

add light compression hose with edema going down to help control it. have MD insruct in what level of compression she feels is best to help decrease edema to lower extremities- ongoing

pls talk to dr before d/c multiple meds, then can be hard to know the culprit if rx related or just due to detox issues- which sounds very possible

another tip for temp- take lukewarm bath. will pull the body heat from you to decrease temp. you will be cold feeling but is effective.

may need to have the cardio issues re-evaluated with this kind of edema onset

--------------------
i am not a Dr. any info is only for education, suggestion or to think/research. please do not mis-intuprest as diagnostic or prescriptive, only trying to help. **

dx in 08:lyme, rmsf, bart, babs, and m.pneumonia.

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treepatrol
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I would stop the Mepron for sure it caused drug induced fevers in me after 3.5 months and Plaquenil is about the same stop both Missy.
In a few days to a week you should feel better anyway thats what I would do.
Get a b12 shot to and take complex b take the acidophilis.Good luck sweety

--------------------
Do unto others as you would have them do unto you.
Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.

Newbie Links

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lymemomtooo
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Melanie, you need to have the sores checked out but it could be as you suggest, the bugs trying to escape.

Once my lymie took some supplements from a homeopathic dr and she got tons of cysts or boil like eruptions around her neck and back. Mostly in the upper back..She freaked and stopped all of the new meds but I think they were killing the bad boys and throwing them out.

Get some fresh lemons and squeeze them into every glass or water. I think chlorella is also good. Gigi once had posted a lot about detoxing and how to get rid of neuro toxins. If I ever find it, I will forward it along.

And the van is probably from the local hospital or medical outreach for those who don't have insurance..

There is one that used to come to our community center but now goes elsewhere. It didn't have enough volume here.

You could probably call the local health dept..or hospital..or even social services to check on it..

Good luck and glad things are better. Also remember to take gatorade or something like that to replace any electrolytes you may be loosing from the frequent potty breaks..lmt

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Melanie Reber
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I put up some photos.

Sorry, it was hard to get them of myself with shaky hands... but I think you can see some of the things I am describing now.

http://lymememorial.org/Melanie_4_09.htm

[ 04-13-2009, 08:53 PM: Message edited by: Melanie Reber ]

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Dear Melanie,

I hope these lines find you doing better today. Thanks so much for the article on HH capsules.

Much Love, Roz

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Melanie Reber
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My 3boys, Thank you so much for taking the time to reply with such thoughtful information. Yes...thyroid is skewed.

No, I won't just start doing any Bs...I have specific ones from my doc. Sublingual B6 and Bcomplex...I just keep forgetting to take them.

Yes, CHF is a very big concern to me as there is a huge family history of death from CHF at young ages on my father's side. I have been to the ER twice already (on doc's advice) with similar symptoms. My rates were off on the EKG so I had an echo, and all it showed was arrhythmia. My current doc wants to see those results.

No, I have no intention of discontinuing meds at this time. I see her on Friday...so I only have a few more days to hang in here.

Hey there Tree-hugger! I haven't seen you for so long. I do hope you are doing well? Thank you for your reply... it is always appreciated!

Thanks so much LM2, I'll try to drink some Emergen-C today that I already have on hand.

You are most welcome To Life. I'm sorry I don't have any better info for you, but I'm sure that if you do a search on this board, many posts will come up re: HH.

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Melanie Reber
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Soooo, the fever is back and the sores are spreading into my scalp now ~sigh~

Has anyone experienced this strange symptom?
And if so... would you mind enlightening me, please? Link to photos is above.

They look remarkably like the sores that sprang up with a Shingles episode last summer, but these do not hurt and they do not blister...they just scab over after a day or so.

(sorry to be such a pest)

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hshbmom
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I hope you finished your taxes! lol
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ticked-offinNc
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My thoughts are with you Melanie. I hope you are doing much better today
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Alv
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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

http://www.quantumbalancing.com/news/frequencies_if.htm

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.


I think you need to read THIS!
http://www.personalconsult.com/articles/whylymetreatmentsfail.html

[ 04-15-2009, 11:16 AM: Message edited by: Alv ]

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lymemomtooo
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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

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jklynd
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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

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Melanie Reber
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I updated the photos.
http://lymememorial.org/Melanie_4_09.htm

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.

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Tincup
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Well I just ate some good catfish with the local town cop down on the boondocks.

So I feel better.

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Hi Melanie,

My Lyme MD believes I have AMA as well. Your hands look exactly like mine.

I have been in treatment for Bart and Lyme the last 2 years. I am treating Lyme and parasites right now.

On your Igenex test I was wondering if you have a plus on the 30 band?

I just want you to know I am not what I should be, but I am doing much better.

Tincup had some really great links about this a couple weeks back. I am not very knowledgeable on the commuter to find it.

Much Love, Roz xoxo

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Article of Photos

http://dermis.multimedica.de/dermisroot/en/35111/diagnose.htm

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glm1111
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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.

Check out www.lymephotos.com


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*

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5dana8
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so sorry Mel [Frown] Heard lemon juice was a good natural directic.
(((healing hugs)))

--------------------
5dana8

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Melanie Reber
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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.)

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Tincup
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Glad to see you are a bit better. That's so nice!

But the big question is... what we all want to know...

Can you boogie woogie woogie all night long?

[lol]

Good luck tomorrow... and....

Don't forget the tea, bumble bee.

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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TickSick
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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.

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minoucat
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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.)



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Tincup
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Well?

How did it go slick?

You ok?

[Big Grin]

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Melanie Reber
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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. [Smile] 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. [Smile] 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

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Melanie Reber
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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! [Smile] 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! [Smile]

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. [Smile] 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! [Smile]

Thanks so much again to each of you. I'm feeling very hopeful now.

Melanie

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Tincup
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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.

I will be sure to send you photos.

Sincerely,

Your former doctor

[lol]

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www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Tincup
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Yeah...

My brain left about an hour ago. WHAT? You could TELL?

That dumpster diving isn't what it is cracked up to be.

Or maybe it was the brussel sprouts, popcorn and strawberries I ate today?

[Big Grin]

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Melanie Reber
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[Razz]
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FuzzySlippers
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Hey Mellie,

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

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Melanie Reber
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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. [Smile]

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

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