Topic: Bactrim not making me feel so good anymore :(
Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
Unbearable rash. (First one in 2 years) Aches and pains are back, even in my feet... Tried to ignore all this for a week... Rash exploding on friday was the final straw.
Herx after a month? Yeast? Too many drugs in my system?
No matter how long I've gone through this I still can't figure out what is what. Or what to do.
Sigh, it's my bday too.,.
Posts: 1728 | From USA | Registered: May 2011
| IP: Logged |
GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
OH NO! KUDZU! That sounds terrible.
Does benadryl help the rash?
I am worried it's an allergy to the bactrim.
And on your birthday too!
Poor kudzu!
Happy Birthday though! Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
| IP: Logged |
Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
It could be an allergic reaction. I would consult your doctor, not something to fool around with.
I know we share some of the same issues, multiple food allergies and med and supps sensitivities. These are all usually due to leaky gut. Unfortunately antibiotics are just adding to the problem.
Posts: 1748 | From United States | Registered: Dec 2011
| IP: Logged |
Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
Thanks Greta. It's nothing like what you've been go through lately...
I stopped taking bactrim last night... Continuing the doxy cause that has helped the rash in the past... Not sure it will help this time since I've been on it.
I took Epsom bath...drinking lots of water... Taking Urtica and Apis.... Everything that's worked in the past... But doesn't seem to be working now.
Sigh... I liked feeling well... The downs are so much worse after the ups!
Posts: 1728 | From USA | Registered: May 2011
| IP: Logged |
Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
Thanks Ellen.
Posts: 1728 | From USA | Registered: May 2011
| IP: Logged |
Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
Actually though, my gut has never been better than on bactrim!
Rash has spread. To the other leg now.
Posts: 1728 | From USA | Registered: May 2011
| IP: Logged |
surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Oh, I'm sorry to hear this.
My last go around w/ antibiotics was Bactrim and flagyl, and I threw my gut out: yeast overload, constipation, started getting stomach attacks.
Discontinued the drugs and felt much better, but getting the yeast under control has not been easy- radical diet change, found I couldn't tolerate grains and dairy.
Today, my stomach's pretty flat- first time in weeks. And I'm eating a lot.
So....rash could be fungal?
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
| IP: Logged |
surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Also wanted to add: I had been having swelling in thumb joint area and pain in my hands-
after diet change and yeast control, all pain gone consistently 100%
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
| IP: Logged |
Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
quote:Originally posted by Kudzuslipper: Actually though, my gut has never been better than on bactrim!
Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
Hi surprise. Glad to hear you are doing so well. I'm trying on the grain free, low carb, sugar free. Not 100 %, but better than I have been.
Posts: 1728 | From USA | Registered: May 2011
| IP: Logged |
BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
What an Unhappy Birthday present!
Can you describe the rash? Look, locations, direction of spread.
What is your status re: Rocky Mountain Spotted fever? Most of us are never tested. It would respond to the Doxy.
posted
Definitely discontinue is my vote. I think Bactrim can be connected to Stevens-Johnson syndrome. When I was on it, my LLMD gave me a warning to watch for a rash and discontinue immediately if I noticed one.
Can you get in touch with your doctor today, or do you have to wait until Monday?
Terrible birthday present. I hope you can enjoy the rest of your day!
Posts: 447 | From Vermont | Registered: Jan 2011
| IP: Logged |
It is beginning on the right leg as well, but it started as a tiny spot on my arm before I started the Bactrim
My history of these rashes goes back 25 years. First rash started as a tiny spot on my leg and spread to both legs ands arms... As one patch clears another emerges right next to the original. And sometimes just pops up elsewhere.
But they are mostly on the same place on my thighs and inside ofy arms starting behind my elbows. They are incredibly itchy. And usually last 2 months or more...dermatologist have called it chronic hives. Cellular memory. An allergic reaction to an allergic reaction. Have ruled out a reaction to detergent or lotion... Many many many years ago, a wise dr. suspected Lyme and put me on doxy, only to take me off once the test came back negative.
But that is when I learned it responded to Doxy. where as prednisone (in the past before Lyme Dx) would just surpress it and make it show up elsewhere, sadly it does not respond to doxy if I have been on it too often.
i Thought I found a culprit with red dye, (i noticed they came after a period of extended sudafed and ibuprophen for headaches) I now get my sudafed compounded.
The llmd thought Lyme or Bart (with an allergic response) When I first herxed 2 .5 years ago, I got a bad one, along with feeling like I was 100. But since then I have only had tiny spots occaissionally and they did not last long. I was multiple abx for 18 months.
I had been off abx for 10 months when I just started up again in Late October.
I have never been tested for rmsp. But I just checked out the Picts... And it doesn't looking that.
But I am allergic so most skin things look angry and hot.
Sorry for the novel. Maybe it will help you guys help me with detective work.
But right now I am thinking allergic reaction... Cause I felt so good at first on the bactrim, and I should know that allergens can make you feel euphoric at first. But I've been on a month, wouldn't I have reacted sooner?
Oh, and I stopped the bactrim last night... Think I should stop the doxy too? I will call my dr tomorrow... But lets face it... Gets would be a best guess too. Even skin specialists are confounded by my rashes. They all think they know, till the tests, biopsies, and usual treatments fail.
Posts: 1728 | From USA | Registered: May 2011
| IP: Logged |
posted
With allergic reaction you can react any time and the intensity can NEVER be predicted even though you think you know the pattern over months or years of dealing with an allergy for your capacity to deal with an allergic reaction can change.
not to scare you but I saw a rash about like this on a patient who was on triple antibiotics by IV for pericarditis. I decided she was having an allergic reaction due to its blotchiness, and locations not common to candida. I turned the IVs off and notified the doctor and charted on it.
Two days later I return to work and they had restated the IVs a few hours previously. They told me she had candida not an allergic reaction. I saw her up walking around in her room getting ready for bed at the beginning of my shift. Two hours later she was found dead. The same rash was there, blotchy, all over her back and sides.. She was a good friend of my mother in law's.
You never know how an allergic reaction will go and a misdiagnosis can be fatal. I know that the doctor I notified never came into see her. He relied on some stupid nurse.
Rashes will sometimes come up when the liver is very stressed and these rashes may not necessarily be an allergic reaction... just a reaction to toxicity. De-stress your liver and start again but keep medicine at hand to deal with an allergy. Benedryl 50mg may help enough to get to a hospital if you need to go. If you have a true allergy that encompases large areas of skin, you have lots of hives, if you have airway problems, you should carry an Epi Pen. If requested most docs will give you one, better safe than sorry.
Coffee enemas are what works for me to detox the liver.
[ 12-15-2013, 10:43 PM: Message edited by: Carmen ]
Posts: 803 | From USA | Registered: Oct 2013
| IP: Logged |
posted
Oh painful. This is unbearable. I get this, not solid red but more splotchy from getting too hot while sleeping,sitting in the sun or in hot water
but cold makes it go away. It would be terrible for this to be nonstop. I would go mad, or madder. My husband had a horrible rash years ago
after pulling english ivy.He is an avid gardener and never had a problem before but somehow he
developed an allergy to that out of the blue.I get this if I take sulfa drugs.
I hope you get some relief soon. This is miserable for you.
Posts: 294 | From southwest mi | Registered: Dec 2012
| IP: Logged |
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
That looks like a freakin' allergic reaction to a medication.
I have a mast cell disorder and when I react to something, I look like that.
I've had that from a drug reaction. Also some drugs make you photosensitive (you can get a rash like that from brief sun exposure). Bactrim AND Doxy can cause this.
I had a rash like that rage for over a month from a brief, photosensitive reaction to meds.
I'm horribly allergic to sulfa (and about 6 other antibiotics). Bactrim is a sulfa med.
I've HAD rashes like that cover my whole body (amoxicillin now makes me look like that).
I've also tested positive for Rocky Mountain Spotted Fever too.
I HIGHLY suggest taking an antihistamine if you aren't allergic (I'm actually allergic to most of the them).
What worked for me last time is making a STRONG tea of stinging nettles with some dandelion root (boiling for a couple minutes in a BIG covered pot and letting it sit covered for several hours).
Drink the liquid several times a day away from food. For me, it's THE BEST antihistamine.
Strain into a big pitcher and keep in the fridge.
Also, fresh aloe helped, directly from the plant (or food grade without chemical preservatives). Good luck!
Posts: 2839 | From California | Registered: Jul 2012
| IP: Logged |
GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Kudzu! It looks terrible! I am so sorry you are going through this!
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
| IP: Logged |
Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
Thank you Everyone! I am also allergic to benedryl! This one really shocks drs and allergists. I take a script called periactin helps with the itch.
I wonder if it is and has always been a drug reaction? Or as you said Carmen my liver protesting... It's so hard to tell which comes first the symptoms or the reaction... Meaning, is whatever it is I have (yes, I sometimes doubt I really have Lyme and co) flaring? SoI take one (or 2 or 5 ) too many Tylenol and my compounded sudafed... And then any other drug or allergen just tips the scales... Or am I really allergic to what ever it is that tips the scales?
I will say though my CBC never show a liver problem.
Judie, I am taking homeopathic Urtica which is stinging nettles... I discovered over a long weekend out of desperation once that this helped. Does not seem to be helping right now though.
Oh, and I do have an epi pen.... I have never used it though... But just refilled it this year just in case.
Posts: 1728 | From USA | Registered: May 2011
| IP: Logged |
BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
That does look allergic. Mast cell disorders are part of our illness. I went through a horribly allergic phase.
That thing you said about euphoria really hit home for me. The last time I took Bactrim, I had a week of radical mood swings (euphoria, extreme rage, back again...) before breaking out in mouth blisters.
I am allergic to sulfa for sure. Was probably headed for SJS.
Glad you stopped the Bactrim.
Hope you can find something to enjoy on your birthday.
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
Drug allergies suck.
I'm allergic to benadryl too. Benadryl is also hard on the liver.
I get stinging nettles and dandelion root (the bulk herbs) from the health food store to make the tea. I found it works better than anything the drugs did for me. Homeopathic meds don't help me much with allergies, except sinusin for my nose.
Good luck.
Posts: 2839 | From California | Registered: Jul 2012
| IP: Logged |
Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
Judie, Boxer, who helps you Dx a mast cell disorder? What are the tests? And how does having a Dx help treat?
I went through a plethora of specialists in the early years of these rashes, I am not eager to re-engage. It's so frustrating with no specific answers... Or even more frustrating no advise on how to deal with it other than "deal with it." I don't need a specialist to tell me I need to " deal with it."
Judie, do you have seasonal allergies? I am hesitant to try herbs because of severe hay fever, tree and grass allergies. Curious if you have these too and still find relief from nettle and dandelion?
Posts: 1728 | From USA | Registered: May 2011
| IP: Logged |
posted
A CBC will not show liver stress until things are quite serious, but dark field live blood microscopy will, when the detox is not sufficient it shows in the blood.
An allergic reaction really like a poisoning. Your body reacting wildly to something that it cant handle. If all your metabolic pathways are not functioning correctly a generally benign substance reacts like a toxin.... but we all know already that antibiotics are not benign.
Mitigating the situatin with antihistamines is fine for an acute reaction but how long will one do this to themselves?
and if the liver is stressed adding tylenol is like adding fuel to the fire.
Posts: 803 | From USA | Registered: Oct 2013
| IP: Logged |
BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
Quercetin (the flavonoid) is a very strong mast cell inhibitor.
WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
Yes, I agree, this sounds like a reaction/allergy to the Bactrim, NOT a herx. Bactrim is known for rashes. Google bactrim and rash and you'll get lots of hits. I would NOT go back on it or any other sulfa med.
It's good that you caught this early.
With mine, I basically had a choice to either take steroids (I refused) or let it go away on its own (nothing else that I tried worked). It took months but it did go away.
Posts: 1737 | From Virginia | Registered: Aug 2011
| IP: Logged |
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
For mast cells, there are some specialists that I know of. One travels to California from Washington.
Some toxicologist know about it and treat it. I have had 5 docs tell me I have this (a dermatologist, an allergist, an infectious disease doc, etc....). I just have some very tell tale signs.
One easy test just see if something is going on is doing a blood test for your total IgE level. Mine is crazy high. Any doc can run that.
Some docs can also take a tissue sample of your rash.
I don't do well with ragweed and couple other herbs/plants. I'm fine with most though.
I've done a ton of allergy patch testing and just avoid my triggers.
I remember going through a period where I was scared to try anything. I got so ill that I decided to try stuff anyway. Fear wasn't helping me.
I've had some pretty bad reactions to stuff, but I've also found things that work for me. I just do one thing at a time until I know how I'm reacting.
I monitor my body carefully for rashes and swelling. I stop immediately if something isn't working for me.
Quercitin did nothing for me. I was actually taking neuroprotek (a high quality quercitin) when I had my last drug reaction. It did NOTHING to help.
That's when I increased my nettles. It was either that or take steroids (which is what's given to mast cell problems, or zyrtec, which I'm allergic to).
Cromelyn is another mast cell drug (and another allergy for me).
Steroids gave me permanent eye damage. No thanks...
You may also have drug resistant genes.
All this discussion made me look at a GI panel from genova.
I have a drug resistant gene to a whole class of antibiotics.
Posts: 2839 | From California | Registered: Jul 2012
| IP: Logged |
Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
I'm so tired. I really thought treating Lyme and co got rid of these. It's spread. Now it's between my legs which is impossible cause it rubs.
If I go to a dermatologist... She will just biopsy and tell me it's non specific inflammation or inflammation like that of a bug bite or drug reaction... But no info on how to make it go away. (And she'll tell me it's from legs rubbing together even though it didn't start there....Uhhg...)
My Dr. will just look at me like "you poor thing" but maybe will do the IgE test. But it will be high. I'm allergic to everything. Patch tests were bigger than they had ever seem, tested for 100 foods, allergic to 95 of them. Although before this happened I was feeling like I was less reactive to everyday things than I have ever been. I was rash free for 2 years.
Maybe I should just go on prednisone. Both my sisters have lupus (really) and both have been in long term remission from a year of low dose. And my dad had a not quite diagnosable auto immune disease.
I so hate me right now. I'm crawling out of my skin. i'm achy again, What a difference a month makes.
But thank you for the info Judie. I really appreciate it. But one more question, would it take a month to show a reaction?
Posts: 1728 | From USA | Registered: May 2011
| IP: Logged |
surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Oh Kudz, I'm so sorry. Sending you good thoughts-----
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
| IP: Logged |
Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
as predicted dermatologist wasn't much help. looked like a oversensitivity reaction to either drugs or food or anything else...
She very nicely, told me, that there are two camps in chronic lyme... one that believes that there are still active ketes...and one that believes that what remains has initiated a inflammation response to everything...
she asked me to ask my dr. about an extremely low dose of doxy... a non antibacterial dose, but an anti inflammatory dose of 20 mg 2 x per day... dose they use for gum disease and rosecea.
She also had lyme disease and didn't feel well after treatment... she says "she went rogue" after consulting with and ID dr who told her further treating would not help... so after doing her own research... she did this low dose herself for 6 months or so.... she felt better for a long time so then she stopped.
has anyone done anything like this?
she said it was not a yeast rash... didn't look like parasites...wanted me to get my eosinophils checked to confirm her suspicion.
she didn't think this looked like a mast cell rash...
she said I am in experimental territory now...
as I said...why bother going to dr's.
Posts: 1728 | From USA | Registered: May 2011
| IP: Logged |
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
"would it take a month to show a reaction?"
For me, a rash can start out as a small dot. Then over the next couple months just grow and cover my body. It can be slow moving or very fast.
It's like my cells get activated and just start activating the ones next to it.
For a drug reaction, it usually comes on pretty fast, like over the course of a couple days.
My friend takes low-dose doxy for rosacea. It helps, the doc just had her go up because now she has Lyme too (and it's looking like she might have been infected around the time the rosacea started when she traces her history).
They use to give me steroid cream for the rashes. Steroids stay in the body a looooooong time. 6 months after using a cream, I developed a rare eye condition called central serous choroidopathy. I now have PERMANENT eye damage from mild steroids. This is swelling of the retina.
This was BEFORE Lyme. I just caution anyone about even mild steroids. It does more damage than you can imagine when it goes wrong.
I can't even imagine what it would do to me now.
"she said I am in experimental territory now...
as I said...why bother going to dr's"
Gosh, she sounds sympathetic, but out of ideas.
Maybe try a different doctor if you have the energy.
I had to figure out the stinging nettles tea on my own. It sucks that we have to be our own experts because the experts don't know what to do.
I think I saw 4 Lyme docs until I found what worked for me.
Good luck.
Posts: 2839 | From California | Registered: Jul 2012
| IP: Logged |
Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
The low dose she is referring to is similar to the protocol on The Road Back Foundation.
Posts: 1748 | From United States | Registered: Dec 2011
| IP: Logged |
Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
Judie, that's what happens to me! I have had a small itchy dot on my arm since August it would come and go. It is one of the things that made my pcp want me to back on abx ( along with increased inflammation markers, and headaches, and muscle pain) it went away and then it popped up on my legs. It stayed pretty inconsequential until I sprayed a hydrocortisone spray on it. Then it went crazy.
Ellen, she is suggesting lower than the road back.,. Although I think they only do 3 days a week so maybe it is the same.
Beginning to wonder which came first the allergies of the Lyme? And what to do now? Maybe I just go back to status quo...maybe it is allergies, fibromyalgia, and nonspecific auto immune... You can't keep chasing perfection.., although I felt pretty darn good for a month.
Have there been any new discoveries to treat allergies? Not so sure about NAET...
Pretty down I guess.
Posts: 1728 | From USA | Registered: May 2011
| IP: Logged |
GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Oh my Kudzu
That is terrible.
Although there is something the dermo said to you that is BS.
She had lyme and an ID doc suggested further treatment. ? Was she seeing Dr. D?
I don't believe for a second, that an ID doc suggested further treatment. (unless it was Dr. D)
I am sorry but I have spoke to so many lyme patients, and ID docs are public enemy #1. (Excepting Dr. D)
Do you think she was placating you? Or did she strike you as being a sincere lyme patient?
Does your rash sting when you bathe or get water on it? Does it feel raw?
Does each red spot feel raised, more inflamed that the lighter skin around it?
The picture example you used, and the above symptoms and terrible itching, were what several dermos misdiagnosed as guttate psoriasis. I had it on 90% at the worst, and then spots on my legs and upper arms and torso for 12 years total.
It went away with doxy tinidazole and biaxin.
It appeared after my EM in 2001.
So please do not feel discouraged. If 12 years of rash can go away, yours can too.
The itchiness is a pain, I feel for you.
I spent 300$ month on steroid cream, tar baths, UVB lamps-all a waste. You name the steroid cream ointment I've used it. They work at first, and then don't.
Please please please don't give up.
What if it truly is a sulfa allergy? They are common. And this allergy to the sulfa triggered your immune system and the rash.
I feel so badly for you. Rashes demoralize. I don't know how a rash yields so much power, but it does.
Please don't be discouraged.
I am hopping in my transporter to pop down to see you. Channing Tatum movies, sea salt caramel chocolates, and cinnamon buns! On the way!
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
| IP: Logged |
Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
Greta,thanks for the encouragement ... Yumm on the sea salt chocolates... Come on down. Transporter receiver on stand by!
But Correction, no, The ID doctor read her the riot act... no more abx. She did the low dose on her own!
I have never been on those three abx at the same time, and as you know, to scared to try tindi. But I was on biaxin for a long time (with amantidine) .. And then ceftin, Cipro with a flagyl pulse for 8 months! I did 18 months of non stop abx... Alternating, zyth, biaxin, ceftin, adding in Cipro and flagy, always GSE too...Added doxy often whenever I got a rash. So I feel I've done so much. But I did not have a full blown rash ( just little spots) for the entire time I was on abx.
I admit I stopped cold a year ago when my gut have out...
I have had these rashes off and on for 25 years! There is nothing like an itch to make you feel totally unsettled and not comfortable in your own skin.
Can we add a few Russell Crowe movies in the mix?
Posts: 1728 | From USA | Registered: May 2011
| IP: Logged |
GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Russell Crowe! Oh goodness yes! Always have time to watch Russel Crowe! And ever since Lawless, I'mve carried a torch for Tom Hardy too...so we might have to watch Lawless again.
Haha! OK good, I stand corrected! I'm glad my faith in ID docs (excluding Dr. D of course), has been restored to it's rightful amount. Zero.
Well good for that dermo you saw to do her own thing.
Aww man...I'm so sorry you've had that rash for 25 years! You are so right. Itchiness and heat, it just wears a person down.
I didn't realize all the combo meds you took previously. Wow! No wonder when you started abx again you really didn't want to.
I am so proud of you for your previous lyme battle. You really went in hard! 120%!
WHATEVER treatment option you choose for your body and this rash...I got your back, Kudzu! I'm behind you 100% !
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
| IP: Logged |
GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Well, me and Russell Crowe
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
| IP: Logged |
WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
Kudzu - We are in a similar place - I too have allergic reactions popping up all over the place. I'm off all meds, on a very limited diet and extremely frustrated.
In answer to your question "would it take a month to pop up?" It sure could. Mine took longer. I was on Bactrim for months, no problems, and it actually helped a lot. Then a small rash on my arm, which I originally didn't think much of. It was there for at least a few weeks until it worsened and spread.
I'm so sorry the derm wasn't any help. I still would avoid Bactrim for now. The timing and your propensity to allergies seem too suspicious.
Posts: 1737 | From Virginia | Registered: Aug 2011
| IP: Logged |
surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
What about glutathione? Is there any way you can get a series of IV glutathione?
I think if I were you right now, this is what I'd try. My thought.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
| IP: Logged |
GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Ooh Surprise! That is a great idea! Glut might help for sure!
Kudzu-how are you feeling today? Any better? Any less itchy?
Thinking of you and Sending hugs your way.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
| IP: Logged |
Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
Hi all: well... I'm not gonna say it... Don't want to jinx myself... Lets just say doxy, and a lot of water and no more bactrim, seems to be working.
Saw my PCP yesterday... She had a novel idea. Stop EVERYTHING! (After the doxy and except my vit d cause I'm so low) no supps, no fish oil, no abx, nothing. Just my essential drugs(cymbalta, ambien, Claritin) I would say she was a ilads crazy, but she is the one initiated my return to abx. She herself stayed on abx for 8 years with Lyme til she had no bands. She watched me treat and encouraged me to stay the heavy abx course for almost 2 years...
I'm to focus on my low carb eating, and just see how my body is handling things now that my kete load is down... She said, my last 2 WBs were the first to show only one 41 past infection band. (I was treated extensively on Igenix multi bands, but she has been following progress with lab corp which has always only showed both IGM and IGE 41 bands) and my cd57 is going up too...
She said I can always try abx again if I am not feeling well... But she feels I am feeding my allergic reactions right now, and that I should give my body a chance to operate on its own with good anti inflammatory nutrition and nothing else... And see.
It made a lot of sense to me... I am working with a physical therapist on an excersise program...I am eating better, not perfect, but this may be the push I need on that. The abx didn't cause an identifiable Herx this time... Just a reaction...
Maybe it's time to let go and just do the best I can.
Posts: 1728 | From USA | Registered: May 2011
| IP: Logged |
GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Hi Kudzu!
Thanks for the update. I was worried about you and digging through my lyme books regarding rashes.
Coffee in one hand, Dr. H's book in the other, and a cat on either side of me.
Found a tidbit here and was going to ask you which bands you were still positive for on your WB.
"borrelia burgdorferi sensu stricto is the primary form of Bb found in the US. B31 strain.
Lipoproteins on the spirochetes surface are known to be proinflamatory, but more than 8% of the genetic coding of B31 is devoted to these lipoprotein surfaces.
Lipoprotein attracts neutrophils to the spirochetes and are fifty to FIVE hundred fold more active at inducing inflammatory cytokines than other common bacteria."
Now here is where my ears twitched...
"the body's production of Bb antibodies. These may target the 41 kDa flagella, and other surface proteins such as Osp A, (in an attempt to disable the bacteria)
BUT may cross react with antigens on the surface of our own nerves and organs, which are structurally similar.
This process is called, "molecular mimicry", and immune reactions against such shared antigens could play a role in the chronic manifestations of borreliosis, including pain"
Dr. H's new book, pg. 420-421
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
| IP: Logged |
GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Now what I interpreted this as is: (and I may be WAY out to lunch...only one coffee in so far)
If you were infected with B31, your body had a tendency towards more inflammation that if it was infected with other strains.
Your body saw the spirochetes moving around like the little bast#*P? that they are and sent full armies of neutrophils to fight them.
System wide inflammation and pain increased.
let's say your body, and the combo abx you used erradicated B31.
BUT with this molecular mimicry business, your body still "sees" flagellates or weird surface proteins on your organs, so it still produces antibodies to 41kDa on your WB.
So the pain in your feet, the rash on your skin...what if it is your body misinterpretting your own cells for the lipoproteins/surface proteins of B31 spirochetes?
Anyways, this is the interesting tidbit I found so far in the digging.
I think you made the right choice with your PCP to stop everything and see how it goes.
I may be lambbasted for this comment from others on here...gulp...here goes...
I may do the same if I feel that my problems are no longer infection based, but my immune system doing an auto-immunity thing instead.
Gulp.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
| IP: Logged |
Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
I love you Greta! how do you do that? I am so impressed with your research! I am so unable to grasp this stuff!
I will have to go back and check my igenix for band 31. I know my OSP A was off the charts. and thank you for the Dr. H. page numbers.
so here's the big question--- how do i get my body to stop fighting imaginary lipoproteins/surface proteins? (and of course we know I have a lot of 'lipo")
as for you... you need to listen to your body... but you've only been treating for less than a year right? I was no longer herxing, and had plateued over several protocols... and my gut gave out which made it a priority. Just saying, don't do anything hasty!
Posts: 1728 | From USA | Registered: May 2011
| IP: Logged |
Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
nope, no band 31 for me. my bands were 39, 41, 83-93 both igm and igg. however, this was not considered a positive test even for Iginix
but at the same time i did the Igenix... I also did a "My Immune Id" from pharmasan labs...
my DbpA (not OspAwas off the charts... and this is what it says about that.
DbpA: Deocrin-binding protein A (dbpA) allows spirochete to bind to extracellular matrix of host cells... DbpA also has the ability to bind to glycosaminoglycans. these proteins are not essential for infection but allow the spirochete to maximize colonization in tissues, especially joints and skin.
sounds like me! no one ever went over those test results with me...not sure what any of it means... Lab notes said could not definitely say I had lyme, LLMD said I did.
also was high on VisE-1, P100, not so high on OspC or DbpB...
[ 12-19-2013, 04:52 PM: Message edited by: Kudzuslipper ]
Posts: 1728 | From USA | Registered: May 2011
| IP: Logged |
Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
Kudzu I think she gave you excellent advice. I know for me getting off antibiotics and doing the diet 100% made a huge difference. Unfortunately you may still be causing inflammation with some of the foods you are eating which in turn will cause your symptoms.
Posts: 1748 | From United States | Registered: Dec 2011
| IP: Logged |
Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
Kudzu I think she gave you excellent advice. I know for me getting off antibiotics and doing the diet 100% made a huge difference. Unfortunately you may still be causing inflammation with some of the foods you are eating which in turn will cause your symptoms.
Posts: 1748 | From United States | Registered: Dec 2011
| IP: Logged |
Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
Kudzu I think she gave you excellent advice. I know for me getting off antibiotics and doing the diet 100% made a huge difference. Unfortunately you may still be causing inflammation with some of the foods you are eating which in turn will cause your symptoms.
Posts: 1748 | From United States | Registered: Dec 2011
| IP: Logged |
GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Aww! Thanks Kudzu You're so sweet.
How do you feel? Do you feel better since stopping abx?
I am interested in those tests you had. I want to look them up tomorrow ro see what they mean.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
| 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/