posted
I'm sorry all. I wrote a big long post and deleted it because it was too depressing and no one wants to hear it.
I'm laying here dying. Bedridden. Too sick to even watch TV. I don't understand why no one can help me. My chest is so full of inflammation. I'm bedridden. Sicker every day. Nothing helps. I thought I may be herxing by I don't think so anymore. I seem to just be writing sicker everyday like always.
I just want to talk to someone who can understand. I think this may be my last chance at getting treatment right.
My kids love me so much. If they didn't need their dada, I'd wish for death. How miserable, I can't even wish for death because I love my kids too much.
I'm sorry. Death seems inevitable. Only God can save me. I don't understand. I don't understand why nothing I've tried for a year now has worked. I could walk this time last year. Not anymore. I can barely breathe. I don't understand why nothing works.
This took all that I have to write. I'll suffer for this little task, but I'm so lonely and no one understands.
I'm sorry all. I wish I had the strength to get to know all of you better. Thank you for what you do here.
Posts: 748 | From Texas | Registered: Feb 2015
| IP: Logged |
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
Sam...you mention chest and it makes mw wonder about mold. Has anyone checked that. I can end you links to support groups and special docs. Regular docs dont catch it
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
| IP: Logged |
posted
I think I've been checked for mold by an ND, but I don't think that's it.
Its definitely inflammation, and whatever is causing it, Cefzil is the only thing that has ever seemed to somewhat hit it. Do cephalosporins kill mold? I really don't know much about mold.
But my heart *burns* with every beat. Like beating against sandpaper. It's scraping up against the inflammation just making it grow.
As far as relief, Toradol is the only drug that's come close to giving even a little relief. My heart and all inside my chest just feels so scarred up now.
Posts: 748 | From Texas | Registered: Feb 2015
| IP: Logged |
Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
That sounds like endocarditis.
Sam...don't die. Get up and go to the ER. Describe your heart symptoms. Don't tell them the Lyme stuff. Tell them you think you're having a heart attack. They can do a bedside EKG within ten minutes.
I know doctors don't listen to us. I know how hopeless and lost I feel and I've only been really sick for a year. But if you are in pain, you think your chest is inflamed and your heart hurts, you have every reason to go to the hospital to make sure at least that you're NOT dying.
Ten minutes. Any ER. Please go. It's the only way to know for sure.
Posts: 2057 | From Florida | Registered: Feb 2015
| IP: Logged |
posted
Thanks Jordana, I've done that though. Twice actually, a month ago. They thought it was pericarditis based on what I was saying, but they did an echo and it was "normal".
But my mitral valve and aortic valve are thickened mildly now, and they weren't 6 months ago. Also my aorta has "diffuse plaque" now, and I didn't 6 months ago (or a year ago). I think they're seeing inflammation in my aorta and it just looks like plaque on ultrasound.
I actually have a 12-lead EKG at home that sends readings to a cardiologist whenever I take one. Results always come back in 5 minutes. It's normal. Always normal.
I really do appreciate your concern Jordana, very much. I wish someone could see this and help fix it.
Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
That's AWESOME that you have that at your house. The chances of your untimely death are probably pretty low if you have that -- I didn't even know you could do that, lol.
Sam -- the thing about the heart muscle is that it's made of cells like any other thing in our bodies. One thing that happens with illness -- especially viral illness, is that the cytokine cascades tend to make cells resistant to nutrition.
Mitral valve prolapse and such can sometimes be stopped or reversed by supplemental thiamine/b1. I don't think taking b1 will reverse all your symptoms or make you feel less sick but it's a good protective strategy for your heart.
If you have the energy for it, you could also look into the benefits of supplemental b2. B2, along with some other nutrients, directly nourish mitochondria and the need for it increases immensely in disease states. You could be taking a great multiple vitamin and still be deficient in b2 if you are sick.
Heart problems are acquired through viruses, hardly ever through bacteria. I don't know what your treatment protocol is like but maybe also look into antiviral strategies. That's another protective measure you can take and those typically don't cause "herxes." They also take a long time; a year or more of consistent beating back of viral loads.
Just some thoughts. You're not going to die. It's horrible to hear bad news about your heart, I know, but realize that cardiac medicine is probably the most advanced and scrutinized allopathic specialty in the US.
Also -- your heart CAN regenerate, unlike some other organs in your body. Alleviation of viruses and therapeutic nutrition can change the game pretty fast.
Posts: 2057 | From Florida | Registered: Feb 2015
| IP: Logged |
me
Frequent Contributor (1K+ posts)
Member # 45475
posted
Do you have a LLMD? If so, what does he or she say? Are you pleased with the LLMD if you have one?
I feel for you. I know where you are. Hoping you feel better very soon.
Posts: 1431 | From USA | Registered: Mar 2015
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Just reading this post and knowing no other information, I think you are herxing. You were herxing about a week ago, so my thought is that it is still going on.
What did you do about the herxing?
Did you stop the meds? Did you use Glutathione IV to help clear you up? Aka-seltzer Gold? Green tea? Anything?
If not, I am leaning towards herxing as a possible cause of your misery. Herxes can last weeks to months and inflammation can skyrocket during that time. I know I am herxing because I get depressed and whiney and wimpy, not like me normally. I cry over everything too!
Please call your LLMD tomorrow and report this situation. He/she may want you to stop meds for a while till you feel better.
And I hope you do feel better soon! I've been there, and you are right, it is a "want to die" situation. Fact is, the Lord didn't want you to (at least me he didn't) so I am still around many years later. And thankfully so.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Sam, has anyone mentioned Chondritis (inflammation of chest wall) to you? It has affected a number of Lyme patients. Just something to consider.
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Yes, Sam, it could very well be costochondritis. Many lyme patients get this.
Burrascano lists it as a lyme symptom this way:
"Chest wall pain or ribs sore" (page 10)
It is exactly what you are feeling--inflammation in the chest wall. It is actually in the cartilage that connects your ribs to your sternum (breastbone). That's why it hurts to breathe, etc. See these links for more info:
So, it is lyme inflaming your rib joints, basically. Hopefully, good lyme treatment will get rid of it. It is painful.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
posted
Thanks all. I've read everything you've all written, I appreciate it all. Everything's so overwhelming.
This isn't chostrocondroitis. This is more surrounding my heart, hurting with every beat. Imagine rubbing sandpaper harshly against your skin, how it would scrape and burn. That's exactly what my heart feels like with every beat. Horrible scratching and very heated. To enormous proportions now. And scarred now too.
Breathing hurts because when my lungs are full my heart is pushed even harder against whatever is scratching it. Holding my breath is the worst.
This grows everyday whether I take abx or not. Stopping doesn't hurt or help. I've tried that before. It's been growing for a long long time.
I'm not sure if I was really herxing last week or not. My eyes get blurry when I herx. They did seem blurrier last week but are back to normal blurry now.
I've seen four LLMDs hoping one could figure out how to help my chest. None of them have ever seen anything like it.
I can't even bathe hardly anymore. My whole body burns horrifically. I can't even read a book to my kids. I'm that sick. My "vascular tone" is so messed up that taking neurontin relaxes my blood vessels and then my heart pounds to compensate, and then the scratching is even more horrific.
Sorry to be a downer. Hopefully for the sake of my kids, the Lord will keep me around too. Some days I'm convinced He will, other days I just don't know. I do know I won't live unless He turns this around. It'll be all Him.
Jordana, good to know about the heart. I'm pretty sure I've built up a lot of scar tissue around it now though. My primary doc (not llmd) believes that too. I'm not sure if the body could ever adjust to scar tissue. At this point I think there's some permanent damage in there. It started feeling scarred a couple of months ago I'd guess.
Sorry to complain. But this is beyond horrific now. Hopefully these abx will help. But I've been saying that for a year now. I'll see I guess. Maybe I just haven't found "the one"??? But how long does that take?
This is why I sometimes wonder if I have Lyme, because a year later nothing has worked. And I only had 1 sure herx, if it was even a herx. Sure seemed like one. Altogether an infection still seems to make the most sense though.
So sorry to write all this. I do have hope, even though it doesn't sound like it, but I'm a realist too. I look at things as they are. If this is going to kill me, I'd rather not ignore that fact. I'd rather prepare for it the best I can. God can always turn things around in the blink of an eye. I pray that He does. I've seen Him do it before. It's just not happening yet.
Thanks everybody, sorry again. I really appreciate all of you.
Posts: 748 | From Texas | Registered: Feb 2015
| IP: Logged |
Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
It sounds unbelievably awful.
Since you've have your heart checked ad infinitum and no one has too many answers for you there I'm going to take a wild stab in the dark and go another direction:
I've had this condition. It is outrageously, unbelievably painful and it is really often missed since it is a rare manifestation of both viral and autoimmune conditions.
It's not fatal but it doesn't matter because it's too excruciating and alarming to even bother to care. No one who's had pleurisy will deny they were thinking about The End.
Neurontin probably would not help with this. You'd want anti-inflammatories, heat compresses, and straight painkillers like oxycodone.
Scar tissue is only a problem if it builds up in a place that interferes with function. The heart is a muscle -- scarred muscle can heal with time and proper nutrition.
For the rest of the burning look into b vitamin therapy. It sounds like a pretty nasty case of POTS.
These are just suggestions but I hope there's something here that will help.
Posts: 2057 | From Florida | Registered: Feb 2015
| IP: Logged |
I'm going to take another tack here - anti-inflammational supplements.
I take capsules of turmeric - one in the am and one in the pm, although I don't think anyone can OD on it. It's a great anti-inflammatory supplement and reduces my tissue and joint pain, for me. Can't say what it's going to do for anyone else, but thought I'd mention it.
I drink mangosteen juice for my eyes, but it also affected my sinuses, my intestines, my gums, so who's to say what this anti-inflammatory juice can do for others.
I have taken noni juice and grapeseed extract capsules, also both profoundly anti-inflammatory.
I'm only suggesting all this as another experiment, in case you need to take down inflammation in your body. I don't know, I'm not a doctor, but I know by now that anti-inflams are good for us to try.
Posts: 13171 | From San Francisco | Registered: May 2006
| IP: Logged |
Have your doctors considered (chronic) pulmonary embolism? It causes a pain that is described as 'rubbing sandpaper', similar to the pain caused by pleuritis. It is very difficult to diagnose. Have you had a CT-scan of the chest?
I read in one of your former posts that your doctor proposed a new protocol. Have you followed his advise? Has the pain increased after starting/changing one of those meds? Perhaps it's a good idea to check the leaflets of the meds you are currently taking for side-effects. If you need help with that, let me know.
Don't lose hope. I have gone as deep as you. I know how it feels. But I am recovering against all odds. Have faith that things will get better.
Keep fighting!
Notti
Posts: 109 | From The Netherlands | Registered: May 2014
| IP: Logged |
dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
Keep fighting, Sam! You are right. Your children need you.
Would IV ABX be a possibility for you? Whenever the heart is involved, from what I know, most LLMD's believe that IV ABX are necessary.
Praying that God will give you the strength and courage to get through this awful nightmare and things will get better for you.
Posts: 2387 | From New England | Registered: Aug 2011
| IP: Logged |
posted
My doc and I have talked about pleurisy, but I think we said I should feel scratching when I inhale and exhale if I had pleurisy. This is constant scratching with every heartbeat even without breathing in or out. Just extra scratching with every beat when my lungs are full.
I really believe it's pericarditis. I read about one guy who had to have a stress echo to see his. I've never had a stress echo.
There are people who have to have their pericardium removed because it becomes too scarred.
I do take some ant-inflamnatories, but more probably wouldn't hurt.
I've had CTAs looking for pulmonary embolisms. They don't see any. I've started taking Levaquin, Bactrim, Plaquenil, and Amoxil, but the pain has been growing daily for a long time. It doesn't seem to be related to any new med.
My doc said if we don't see improvement in 6 weeks that we're gonna try something IV again. But when I had a PICC before it made my chest pain tremendously worse. I know the insides of my blood vessels are irritated, and that PICC rubbing against them made it worse. I couldn't take it and had it pulled after a week. They replaced it with a midline which was great, no pain.
Thank you all so much. I really appreciate everything. I just don't know what the answer is. I really hope the Levaquin does some good. I hate the quinolones, I know they're dangerous, but at this point I didn't have a choice anymore. Two weeks in and I'm not floxed yet, thankfully. Just the same ol stuff I always have getting worse as usual.
Posts: 748 | From Texas | Registered: Feb 2015
| IP: Logged |
Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Has anyone tried prednisone for you at all?
It's terrible for Lyme I know and should never be mixed with Levaquin, but usually for extremely painful inflammation it's first line.
Posts: 2057 | From Florida | Registered: Feb 2015
| IP: Logged |
posted
Yeah, prednisone is what set this infection loose in the first place. I was fairly healthy, took prednisone (to reduce prostate inflammation from prostatitis), then next thing I knew I was in the hospital. Haven't been back to work since.
Before I had figured this out, I took dexamethasone since we thought I probably had something autoimmune. I went down fast on that.
Posts: 748 | From Texas | Registered: Feb 2015
| IP: Logged |
WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
If you call your LLMD, would he consider resuming IV meds now? You could always go in and get some shots - and mix that with your orals. You don't have to have a line put in to get some IVs. It doesn't seem right to wait 6 weeks.
Another thought since you mentioned prednisone - have you had your cortisol level checked?
Have you ever tried an inhaler? Sometimes it's hard to differentiate pain from the heart with pain from the lungs, at least for me.
I am so sorry you are suffering so much. I can hear how badly you want to be there for your kids. I will never forget how the worst part of being bedridden was not being able to do anything for or with my kids.. and how even reading them a story was somehow excruciating.
On the bright side, I also hear the determination in your posts to get better for the sake of your kids. I think that will go a long way.
Posts: 1737 | From Virginia | Registered: Aug 2011
| IP: Logged |
posted
Thanks, WPinVA. It's so nice to hear from people who understand.
I don't think he'd do IV until we have given the Levaquin a chance. If it works that's great. You just never know.
I haven't checked cortisol in a while, but I have a 24-hour collection kit sitting on my nightstand that I need to do.
I've tried an inhaler, no luck. I mainly tried it to please a doctor. I've had some breathing issues most of my life, but this is a lot different than lung issues.
I am very determined to get well for my kids. I just hope something works soon. I can't keep getting sicker forever.
Posts: 748 | From Texas | Registered: Feb 2015
| IP: Logged |
WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
Hey if you do the cortisol test, I'll do the heavy metal urine test that has been sitting here on a shelf for MONTHS. Deal?
Posts: 1737 | From Virginia | Registered: Aug 2011
| IP: Logged |
I hope you get some answers soon, Sam. I guess also it would be most helpful if the doctors can figure out what's going on with your body too -
Posts: 13171 | From San Francisco | Registered: May 2006
| IP: Logged |
posted
Ok, my heart is so inflamed today, I feel like I'm drowning, this just gets worse. The pressure and scraping pain is beyond unbelievable. I can't breathe, my O2 even dropped to 87 for a moment last night. I probably shouldn't be on here, I should probably be in an ER. But they never help... The inflammation is killing me. And I've had sooo much radiation...
But no one in my family ever believes me, and they say "it's just Lyme, you're supposed to feel like you're dying." Not like this. My heart is having a tremendously hard time beating through the inflammation that surrounds it.
Father God, please help me and help me to live. Show me what to do to get through this and get well.
Posts: 748 | From Texas | Registered: Feb 2015
| IP: Logged |
posted
It's weird that a cardiologist couldn't tell you what's going on with your heart, if something's going on with it. Have you really asked them for any and all cardiological tests?
Posts: 13171 | From San Francisco | Registered: May 2006
| IP: Logged |
dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
So sorry for your nightmare, Sam. I hope you got to the hospital.
Posts: 2387 | From New England | Registered: Aug 2011
| IP: Logged |
posted
Praying for you as I write this and hoping you're feeling better.
PM sent with a couple of names of "Lyme-friendly" Cardiologists. Maybe your LLMD can consult with them to help you? It's worth a try.
Posts: 9020 | From Illinois | Registered: May 2006
| IP: Logged |
Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Praying for you too Sam.
You are not alone. When we're isolated by suffering we always think there is no one there. But there is someone there, lots of people, who love you, always.
Posts: 2057 | From Florida | Registered: Feb 2015
| IP: Logged |
posted
Yeah, I've seen many doctors. Four LLMDs. None of them know what's wrong with my chest.
The only cardiac test I haven't had is a stress echo. I've had everything else, although mostly six months to a year ago. An abdominal aortic ultrasound is showing plaque throughout it now that wasn't there six months ago, but my GP says plaque doesn't build that fast.
I think this disease is eating my aorta along with my other blood vessels and the inflammation just looks like plaque on an ultrasound. My GP has thought I have vasculitis ever since the beginning, and that is where bartonella and Brucella like to live... RMSF too I believe. I tested positive for Brucella and RMSF.
Thanks so much for the tips and prayers all. I really appreciate them all.
Posts: 748 | From Texas | Registered: Feb 2015
| IP: Logged |
WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
Four LLMDS... you are working so hard at this and it sucks that they're not able to help. Is there any way you could travel to see one of the best LLMDs?
I still haven't done that heavy metal test yet...
Posts: 1737 | From Virginia | Registered: Aug 2011
| IP: Logged |
posted
I still haven't done The adrenal stress test yet either . I've seen Dr. J in MD, and I have an appointment with Dr. C in MO coming up in a couple of months. I tried Dr. H and he's not taking new patients. Is there another one that you think I should try?
Your right, I'm working very hard at this. It's so frustrating to have only seen a very minimal, very short-lived improvement only once this year. I keep thinking maybe I'm just not being compliant enough or something, but I'm trying so hard to be.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I keep reading your posts over and over. You are taking a lot of harsh medications, combo's not typically studied for long term effects. Anyhow...
And I keep seeing HERX in the words and the symptoms.
Burning, that raw feeling when nerves are too toxic, inflammation, pressure, scraping, scratching, blurry eyes, weakness, depression, anxiety, etc.
My suggestion is to locally get the echo and other test and if all clear- if it were me- I'd stop all meds for 6 weeks and let the inflammation subside and the toxins get cleared.
I'd also have some MTHFR testing done if you haven't.
What you are doing isn't working. It is making you worse. Time for a change.
We all want you to feel better and we are hoping it happens and praying it does too.
posted
SickSam - keep calling Dr. C's office (every day if need be) to see if they have any cancellations or a wait list. Patients have gotten in sooner by doing this.
Posts: 9020 | From Illinois | Registered: May 2006
| IP: Logged |
posted
Tincup, I took basically nothing for a month starting near the end of November (???) or so. Nothing changed. Same symptoms continued to progress even without abx. So the meds don't seem to be making me worse or better. I keep getting worse daily without them.
I do have the MTHFR mutation. I take stuff for it, it's never seemed to help.
Hopingandpraying, they did call me with some cancellations, but I just don't know if I should try to see him any sooner or not. I just don't know. I've seen Dr. J in MD, he seems to want and try to get me on ivig. But he said that 6 months ago too. He seems to forget what he's said from appointment to appointment.
I was excited when my vision went blurry a couple of weeks ago. I was sure I was herxing. The only time I knew for sure I was herxing, that was a big part of it. But my vision isn't blurry anymore (well, just normal blurry now).
I appreciate all the support. I've tried so hard. I feel like it's my fault I keep getting sicker, like I haven't done something right or something. I don't know, I just can't figure this out. I even tried mHBOT but my chest can't tolerate the added pressure. I just don't know...
Posts: 748 | From Texas | Registered: Feb 2015
| IP: Logged |
steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
In the shape you're in why wouldn't you want to see the doc sooner, I would!!!
Hope you feel better soon...
Steve
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
At the risk I am sounding as if I am arguing... and please know I'm not, I'm just very concerned...
You said... "I do have the MTHFR mutation. I take stuff for it, it's never seemed to help."
BINGO!!!
You can't possibly "do" what others can who do not have the mutation. You are in a special boat here, one we know very little about and one the doctors know even less about. What helps one person can be a near-death experience for another.
Example- Long time member here finally got well- lots of fighting hard and discipline on her part- and as happen, she drifted away from LN because she was getting her old life back.
One day about a year later I got a call from her- totally depressed, tears, very upset. After a LONG time of things going well, suddenly she was horrible and didn't know why.
We went over everything she was doing and it sounded to her like it should all be the right thing. After pressing the issue I learned she had recently started taking Vitamin D. Nothing else was new.
I told her to immediately stop the Vitamin D and she hemmed and hawed, but finally agreed. Two weeks later she called back and was totally fine. Her total misery was caused by something as stupid as taking Vitamin D.
And she didn't even have the mutation. With the mutation your Frosted Flakes in the morning could be causing you problems where Tony Tiger and I do just fine eating them. We just don't know.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Everything you are doing that SHOULD help and does help others, may be doing nothing for you, or like now, it can be making you worse.
Obviously, what you are taking for the MTHFR isn't working. Are you still taking it? I wouldn't. That right there could be the culprit.
Next, you may not be able to handle the antibiotics, either one of them, or all of them. It is impossible to tell which one (or several) might be causing a problem because you are taking so many.
And then there is the case of the magnesium, probiotics or Vitamin D that we see quite often where some just can't take that stuff and don't know that one supposedly simple substance is causing them to be wickedly sick.
Plus, my bet is you may be taking the typical doses of meds. Most (nearly all) people with a MTHFR mutation can't do that without severe consequences.
I've even approached doctors in the past and told them what is going on with their own patients, patients who wouldn't say something to them. Those docs NOW have switched their protocols to accommodate this situation.
Example, some can herx like crazy on 1/2 teaspoon of Mepron three days a week, so badly they must back off for a month.
It's like a sink full of dirty dishes and toxic water. If you keep putting more dirty dishes in there, the sink will not be able to hold all of that garbage and eventually the dirty water will spill out onto the floor. You must first drain all of the toxic water out before adding more dishes in the sink.
This could take months to accomplish, not just 2 or 3 days, 4 weeks, or 6 weeks. You judge it by how you feel.
You are not alone. For decades we've had this sub-set of chronic lyme patients with this serious problem. They felt like sissy wimps because they couldn't do what their doctor said to do or what others here were doing.
They pretty much suffered in silence, too scared of losing their doctor if they complained or deviated from the protocol.
Most of them are dead now because they kept pushing it. Some were put in mental hospitals. We had a lot of suicides that we now know were probably those with the MTHFR mutation.
Please think over what I've said. We want you around for a LONG, LONG time. And it can get better. OK?
posted
Steve, I just don't know if abandoning the docs I'm seeing now for a new doc is the best idea. I've already seen 4 LLMDs in a year and I'm not sure adding a 5th one right now is the best option. Might be, I just don't know.
Tincup, you don't sound like you're arguing at all! I appreciate all the help.
See, I've tried that too though. I've taken different supplements for MTHFR. I've stopped all MTHFR supplements. I've tried them again. Nothing happens either way.
It's so frustrating knowing that I CAN get better and not knowing how to do it. I started taking just one Bactrim a day in November 2014 and I could walk again! Just ONE little pill a day and I was 50% better or so. I didn't herx, just got better within 3 weeks. I didn't know I had Lyme at the time. I know I'm running out of time, this is overtaking me.
When I started Bactrim, I was near the end of a dexamethasone prescription that was taking me down fast. I still wonder if taking Bactrim with a steroid at first made any difference for the better.
And I herxed so bad when I first took Cefzil. That should be Lyme it was killing according to all the treatment models. Cefzil is the only abx that ever seemed to break up this inflammation in my chest a little bit. I could easily tell I was herxing. I wish I could feel that again so that I'd know I was doing some good.
Sorry I'm going on and on. I want to get this right so badly. Don't worry, suicide isn't an option. My kids need me too bad. If I go down, it won't be at my own hand.
The doc I see close to me is great. If I change something he told me to do, I just tell him why and he doesn't get upset. Like I can't take Benadryl, but most of his patients do. Claritin is another one I can't take. All the stuff I'm on now doesn't seem to be doing anything good or bad though. I feel the same with or without it.
Posts: 748 | From Texas | Registered: Feb 2015
| IP: Logged |
Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Listen, you know what?
You are doing EVERYTHING you can. You have crossed all the ts, dotted all the i's, have backup from heart docs and LLMDs and the correct supplements for your detox profile.
You are DOING IT, you're kicking Lyme. You don't know if it's not working, in fact I guarantee you it's working, on something. You can't take Levaquin and have it do nothing; I'm more worried about the longterm effects afterwards for less gain than you hoped.
If you've got Bart every one of those breaths you're taking is killing those bastards that are ruining your life.
The moments must be absolutely excruciating. I know that if you've seen 4 LLMDs -- if any of them knew a better way to do this then they would tell you.
You can do this. If you go South the hospital and what sounds like a sizeable medical team is waiting for you.
What this is, is you are freaking miserable. You should be better. You should be there for your kids. You should leap out of bed tomorrow whole.
One day that will happen. I swear it will.
Just not today.Today you made it through so there can be tomorrow. What you're doing about this today is everything you possibly can, and committing to the treatment you've been given. With four LLMDs I know you're sure it's the right thing to be doing now.
So just live through it. You've made it through more than half the month on that stuff.
You can do it. When you're done you're going to wake up one morning and leap out of bed whole.
It's true, believe it.
Posts: 2057 | From Florida | Registered: Feb 2015
| IP: Logged |
Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Just had a thought.
I've got MTHFR too; the A129C. The gist of the problem is low glutathione.
Just consider...maybe a coffee enema? This ramps up glutathione FAST especially if you have the precursors to make it. It's another way around the MTHFR detox problem in tossing off intracellular debris.
I know you're miserable but maybe if you tried it at a half or quarter dose it might give you some relief. I've tried these before and I was reading about them again today. My experience of them was just a sense of internal pressure and toxicity, leaving, better breathing -- relief.
Just a thought.
Posts: 2057 | From Florida | Registered: Feb 2015
| IP: Logged |
posted
Do you know what your eosinophil count is? Eosinophilia can lead to pericardial disease.
Cefzil is a second generation cephalosporin. I'm not sure whether it's a good choice for Lyme at all. Third generation cephalosporins are better, in general.
Have you considered going back to what worked for you: just the Bactrim and that's it?
Posts: 109 | From The Netherlands | Registered: May 2014
| IP: Logged |
momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
Cannabis oil maybe?
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey Sam,
So glad you are taking my comments in the spirit in which they were given. Thank you. And we now have another important clue from your last post.
You said.. "I started taking just one Bactrim a day in November 2014 and I could walk again! Just ONE little pill a day and I was 50% better or so."
With MTHFR that makes perfect sense! The LESS the better. That was what YOUR body was able to handle.
Example- I took one doxy a day for almost two years and was able to work after being flat out disabled for several years. If I took two doxy, it was too much. We didn't know why back then, but that was MY body's dose.
Then I was bitten again several times, so all that went out the window. BUT, my point is, the less the better. YOU have experienced that.
I've been on herxes that didn't quit for months at a time, even after totally stopping everything, as have others.
Just more food for thought. It is good you keep thinking this out and posting. There will be a way to get you feeling better, but it will come from outside the box. Keep trying!! We are with you on it!
posted
Thank you everyone. I really appreciate all this help so much.
Jordana, I've thought about coffee enemas. I really don't know how to do that though. :/ I tried researching it a while back but I was having a hard time figuring it out. Does your body absorb caffine? I was concerned about that too.
My eosinophil count is normal. It doesn't seem like many people use Cefzil, but boy, it sure hit something in a big way in me. Wish I could find another antibiotic I could say that about.
Bactrim doesn't seem to do anything at all anymore by itself. Actually I had doubled Bactrim before starting Cefzil. Nothing at all happened. Then I added Cefzil on top of it and big things happened.
Momindeep, I have really considered cannabis oil. I've never touched anything like that in my life. Not even alcohol. I guess I'd have to move somewhere where it's legal and try and figure that out. I dunno.
Tincup, don't thank me, I need to thank you! I definitely have experienced what you're talking about. Like 300 mg of neurontin is enough to really make me unable to walk a straight line very well, whereas most people take a lot more than that from what I'm told. But I'm not sure that's what's happening now with these meds. Maybe, but I'm not sure.
At one point I was on bactrim, rifampin, Zithromax, malarone, and one other thing I believe. It was fine. And after that I took 400mg of doxy per day. Same thing, no problem at all. I was taking Cefzil with it too and it wasn't having the same effect as before. I took 4g of Rocephin per day, same thing. I tolerated it easily but I continued my steady decline. That's how I feel on this stuff too, it just doesn't feel like it's an overload of medicine. Maybe it is though...
The first time I tried Cefzil, it was an overload, I could tell easily. But this feels like I'm going down at the same rate I was before I started abx back up. I just don't know. Wish my eyes would go blurry again so that I could be confident that this stuff was dying.
Thank you all so much for your help. I appreciate every one of you. I'm really thinking about trying to move up my appt. with Dr. C. His paperwork makes him seem like a super-organized guy. That's what I need. A super-organized plan that I can feel confident following. I'm so sick though. I don't know how I'd make it through the trip, or sit upright in his waiting room...
Posts: 748 | From Texas | Registered: Feb 2015
| IP: Logged |
Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
You will.
You will do it. You will sit upright in that waiting room and you will fight for your life and your kids and your future and theirs.
You just have to decide something, which is this: You are not dying, you are just sick and you feel like HELL.
You are not dying. You are sick.
You are not dying, but you are sick. That is why you'll be sitting in that waiting room.
You are not dying, so stop dying. Stop it right now. You are not going to die; your choice is whether to be a sick, debilitated alive person or a well and vibrant person.
Those are the only two choices. So you're going to go, you're going to get help, and you will get better.
You have no other option Sam. You're stuck getting better as far as I've been able to reason this out.
Posts: 2057 | From Florida | Registered: Feb 2015
| IP: Logged |
I just hate to waste a trip and effort if there's nothing new he can offer me that my doctors haven't already offered. I mean, the guy I see close to me now was called to the White House when Bush had Lyme. He's treated diseases in foreign countries and says nothing he has seen around the world compares to the complexity of Lyme.
He's a smart guy, but maybe his protocols just aren't right for my body. I figure I should be able to tell pretty soon if I need to try someone else. But if levaquin doesn't work he wants to put a port in, and that's kinda a big deal and I guess it's harder to change doctors once you're in a commitment like that.
I'll definitely sit in someone's waiting room. Well, more like I will hunch over, but I'm gonna keep fighting.
Posts: 748 | From Texas | Registered: Feb 2015
| IP: Logged |
Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Oh, well.
None of these protocols are right for our bodies. I had one guy tell me to obtain zithromax from mexico and ingest six thousand milligrams a day for sixty days.
Oh, right, I thought. I'll just do that and see if the stain on the wall that used to be me is able to regenerate into a coherent life form.
Basically the treatment for Lyme is chemotherapy; it's a hideous experience, no one yet has been able to find a way to navigate around that fact.
Watch, in 15 years, just the time it took for the x-files to go off and back on the air, there's going to be some amazing Lyme discovery that's going to piss us all off and make us wonder WHY we had to go through all this.
For now, though, this is what we've got. Just pick the guy you trust the most and trust he's offering you the best of what he knows.
If George Bush's Lyme doctor told me I needed a port, I'd believe him.
Posts: 2057 | From Florida | Registered: Feb 2015
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[group hug]](graemlins/grouphug.gif)
![[Frown]](frown.gif)
![[Smile]](smile.gif)
Printer-friendly view of this topic