seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
This may seem like an odd thread, but I wanted to put something out there. I have not been on the forum much lately.
I am just so frustrated by my situation and literally have 'paralyzed' myself from treating anything. I feel so irritated that I don't know what's ailing me anymore. I have not taken an antibiotic for almost 5 months.
I still feel poorly most days. Some days are better than others. Do I feel a whole lot different from when I was on antibiotics? Not so much honestly. However, my ability to drive is even worse. Worse panic symptoms.
I just feel like there's no way out. I have seen so many docs over the last 4 years that I literally confused myself. I lost faith in all opinions. I expended big money/time and resources (rides from friends, wife, etc.).
In the end, I still am completely clueless about the cause of my problems and how to best treat. I could truly believe 500 different things...
- Mold exposure - Babesia - Lyme - Yeast - Anxiety - Heavy Metals - EMF - Bartonella - Eosinophilic Esophagitis (have it) - EBV - Strep - CCSVI - One of the endless autonomic nervous disorders Lymetwister always states - Fungal issues - Digestive issues - Gallbladder - Acanthamoeba - told this MANY times - Other parasites - Roundworm - Tapeworm - Mitochondrial problems - Arnold Chiari Malformation - Just plain being fat - SO MANY OTHER THINGS SUGGESTED
I am so fearful of taking pills I just don't do it. My wife gets so mad at me that I do nothing. I truly do want to get better and function again. I work part-time from home when able. I'm not lazy. I just have a fear of pills I can't understand.
Has anyone been in this situation? If so, how did you overcome it? Maybe I'm just mentally messed up. This is NOT how I always was. I never questioned things so much. I just don't understand the cycles of my symptoms. They are so irrational one cannot tie anything.
Every day my eyes are completely swollen. My stomach has had bad pressure on the left side under my ribs. Bad chills. Cough. Horrid fatigue for a few days where I'm yawning 300+ times a DAY then 2 days later it all lifts. Terrible head squeezing, brain fog. Muscles get tight as a board. Spine feel compressed. Suddenly it releases some. Bad headaches. Terrible pains in arms, frontal part of head. Blood pressure shoots up to 170/100+ instantly. Heart feels like it pounds, especially after eating. What the hell?
My eyes are so puffed up I have trouble seeing well. Watering ALL the time. It's like the cytokine storm of the century. ZERO EXERCISE tolerance.
What have I learned after four years? This will NEVER EVER EVER EVER go away on it's own. I will never be able to drive with it. I will never be normal with it. It will kill me likely due to a secondary cause such as blood pressure problems or sedentary lifestyle as I can't do any exercise w/o severe payback.
I have cabinets of supplements and Rx meds. Every day I look at them, but don't take them. My wife thinks I like the life I have of not working or not much responsibility. It's my WORST NIGHTMARE for real. I have always been a go-getter, excelled at my previous career, successful, etc. Being couped in the house is the worst torture. Add to it the flurry of symptoms while inside and it really is intolerable.
My Mother was recently diagnosed with a rare form of pulmonary hypertension. It's genetic. Now I'm wondering if my cardiologist is just plain out of it and missed this on me. I have ALL the symptoms. The only way they caught it on my Mother was a cardiac cath based on a very astout cardiologist's suspicion.
If you were me, what would you do? See a psychiatrist for help on how to cope? The issue is they will do everything in their power to convince me NOT to take Lyme treatment drugs, right? Real productive. I can't afford to pay for endless 'Lyme-Literate' physicians anymore. It cost too much.
Sorry for the long message. I still have never taken combination antibiotics outside of the combo of Biaxin/Ceftin once or twice. With so many illnesses, they say after five years, things sometimes improve. Don't think it's happening for me. Literally every hardcore drug I've taken has caused big reactions. I don't tolerate things well at all.
Then I think to myself IF my house is making me ill, I'm done for. No way out of that one.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
I've noticed your absence and I've missed you. I'm sorry you are feeling paralyzed in your treatment.
From what I've read here and seen in Lyme patients in my life, when people get to this point, they need to go "low and slow" with antibiotics and herbs. Herxing sets them back terribly.
I've seen people who were intolerant of meds make progress this way. Sometimes the starting dose is like 1/8 of a Flagyl every other day. They build up SLOWLY, adding in another abx or an herb when they are stable on the first one.
They also stay on supplements that address detox abnormalities, like methylation defects and such.
You are going to be in this game for a long time, so slow progress beats no progress.
Razzle on this board has had success with this method, and she was in terrible shape. And feeling hopeless. She is now making progress and feeling hopeful about recovery.
And please remember that treatment often takes the form of "two steps forward, one step back." There are ALWAYS setbacks. But you rally and keep going.
I think you can recover, at least to the point of a functional life again.
Mild detox strategies have helped people get "unstuck." That would be another place to start.
Just don't start with too much. Go slow. Be the tortoise in this race.
I know others will show up with ideas and encouragement.
posted
Pulmonary Hypertension can be a symptom of Scleroderma also which of course lyme can trigger.
Posts: 871 | From orange county, ca. | Registered: Jan 2006
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
I am very new to this board and to what this disease can be seekhelp. I am very sorry to hear how you are feeling and BoxerMom has some great info and input.
Being very new to this, I've only been having major neuro symptoms for about 3 months now (probably bitten in late april?? no sign of rash or anything) and am feeling just like you. I am sitting here googling every kind of doctor/treatment what do I have kind of thing.
It is extremely frustrating that there is not just one simple diagnosis and treatment...and I am very sorry to hear about what you are going through.
I think if you feel certain things aren't working for you, you know yourself best, but this seems to be one nasty bug so who knows. If you thing it might be something the cardio missed maybe find another one?
I know money and trying to figure anything and everything out is tough but you have to keep going until something is resolved. It is very tough to do but its the only thing we all have is to keep finding out what is wrong and finding ways to treat it.
I do hope you find some answers and treatments that work for you and if you wouldnt mind passing them along...I'm at the point you are and not sure what to do anymore...and I'm on the short end of the spectrum! what the!
Again, hope all goes well and keep pushing...it HAS to work out one day...
Posts: 183 | From ... | Registered: Oct 2011
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Thanks everyone. I wouldn't be the least bit surprised if my Mother and Father has Lyme and has no idea. They will not consider it. My Mother is a very, very kind and a great person, but not one to listen to theories. She believes conventional doctors and I know thinks my road to Lyme treatment seems weird. I don't bother telling her to pursue it because it'll never happen.
Sorry gagamooppop (tough one to spell - lol) you're in this boat. I have tried a lot of drugs over the years like Malarone, some Mepron, Daraprim, few courses of Coartem and more w/o lasting impact. My test results showed sky high IgG titers of Babesia WA-1 before (1:2,048). NOTHING dented it and no doctor I've seen seems to concur it's this treatment resistant. I'd be lying if I said my treatment was hardcore and long though. I was on 4 Malarones for 4-6 weeks. Some Mepron, but NOWHERE near the big dog doses Dr. B states.
The only drug that ever got me any better to a degree was Clindamycin. It was then pulled immediately. I was on a 10-day course for an elevated ASO titer. Oh, my first course of Coartem had terrible side effects and then temporary gains. 14 days later all gone.
Of course I'm speculating because like I said my symptoms jump constantly and cycle consistently. I never go 4 days w/o a bad pick-up in symptoms. Very demoralizing.
Unfortunately soon it will not matter if I get better as I will have lost all my money. THis disease has torn apart my life, made my marriage rough, and now my young daughter is having problems. Nothing can make up for the damage done and the years lost. I just don't want to live in a cardboard box in 3-4 years.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
Hi seekhelp! I've been taking a siesta from this forum (and others) a long while too. I'm really sorry you're in this state.
I can say I've had the panic of indecision and confusion and loss of faith in the process you described.
It seems like even if Lyme patients as a whole didn't have neurological issues from this/these diseases, the muck of controversial chronic illness and treatment would drive us into apoplexy. Then you add inability to make executive decisions (part of neuro-Lyme for many) and it makes it into a carnival hall of mirrors.
The only way I've been able to make any progress myself is as BoxerMom said, low and slow. I was so absurdly sick that any more than that could have killed me. I'm still taking far less than most people on antibiotics/antimalarials here, and yet still seeing improvements, though very gradually.
If you could have the heart to try again, maybe you could try something like Ceftin at smaller doses for a while, while doing a Lyme detox tea (I have a good recipe I've been drinking for years), and see how that treats you over several months.
One thing I would not hesitate to look into though is the thing you mentioned about the pressure on the left lower side of your ribs. I'm not certain but I think this might be one of the symptoms of spleen enlargement. If you haven't already, you should get that checked ASAP whether you take any more meds or supplements or not.
If you've ever had stomach ulcer trouble or gastric/GI problems, you should also get checked out for that. I'm not a doctor, just sharing things I've run into that I noticed can sometimes be important signals.
In short, after checking your current state out, maybe you could try the slow and steady marathon approach, ramping up slowly, while using a few supportive methods.
It would be less likely to hurt you than full-dose multi-meds, and might have some improvement over time. Patience might be your best ally with this approach, so hold onto it. Maybe with this plan you wouldn't feel like you were in total Limbo.
You have my good thoughts. I really hope that you can have some clarity and hope, and that you can try again. Feel free to contact me if you would like to discuss any of this, or if you would like my Lyme Detox/Stomach Tea recipe(s).
posted
I'm now realizing perhaps I should have made a better screen name but really when coming to this site first I figured, eh I won't be coming here much so why not make something crazy up...oohh welll.
Seekhelp..have you gone the natural route by any means? When first looking into LLMD's and ND's I kind of just made a phone call to set appointments and the first one that called back I went to...just so happened to be the ND so I went to her and she was significantly cheaper.
The LLMD did eventually call back and it was $1200! I'm sure they are curing people left and right but for me that was a bit too much and am going the natural route for now b/c it is a bit more affordable.
Again, not coming from much of a background here but just trying to give out any advice I have. Perhaps this is the big hill you have to get over before you can start getting better and its the most challenging one. Something always works out somehow and I hope financially things start getting better.
Any luck with working from home?
Posts: 183 | From ... | Registered: Oct 2011
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James1979
Unregistered
posted
Not all LLMDs are $1200 for the first appointment. It sounds like you found a popular one. Mine was "only" $600 for the first appointment, $250 for subsequent.
Ha! "Only $600!" I never thought I'd say those words.
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posted
I know you tested positive for Babesai Duncani. Have you tried mepron? From reading posts here you have to be aggressive with it. In between the coartem you should still be on babs treatment. Have you tried any forms of art?
IMO, you probably not have treated the lyme good either.
From reading your posts throughout the years, it seems like stop treatment when you herx. Can't you back off then restart again? You also need to work on your fear of pills. I don't like to take them either, but if they are going to help you get better it is worth it.
I really hope you find your answers.
Posts: 323 | From Michigan | Registered: Sep 2006
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phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Seekhelp, You sound just like me.. I am afraid of pills.I could have written your post myself.
The drugs I did take didn't work. I am at a lost as what to do. I too tried clindamycin in small dose and it was the only drug that I could tolerate. I didn't know it was taken off the market.. WHY?
I wish I was of some help but wanted you to know you are not alone. I too have so much anxiety ..
Please keep in touch..
Posts: 1058 | From VA | Registered: Oct 2010
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posted
Seek, I had that terrible pain under the left rib, too. In fact, my lowest rib is no longer attached as it should be (verified by a doctor). The only thing I found to help was the Pekana detox. On their site they have a spleen remedy. They recommend it be taken with two other remedies, and I took all three.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
Any treatment is doomed for failure until you make sure and rule out or in KPU/HPU.
Do this test on the website www.hputest.nl - it is free - over 70% of people afflicted with Lyme have a KPU problem. It is either lyme-induced or inherited.
A very famous doctor who recently passed away treated schizophrenics successfully in a way that dealt at the same time with KPU. He was not aware of that at the time - I read about him many years ago and when Dr. K. figured out that KPU was a major problem for the majority of Lyme people, he got in touch with Dr. Abraham Hoffer who was going to be a speaker at one of Dr. K.'s conferences. Sadly he passed away shortly before that could take place.
Unless you are able to release one of our greatest toxin problems - the heavy metals - it is very difficult to get totally well and stay well. Pathogens thrive in toxic bodies = low perfusion - low oxygen = that is where bugs like to hang out.
quote:Originally posted by GiGi: Any treatment is doomed for failure until you make sure and rule out or in KPU/HPU.
Agreed. I did this. I thought it would be a lifelong treatment for me because I appear to fit the profile for genetic KPU, but it was not. I just needed a couple years of it, now just supplement more "normal" amounts of zinc.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
I empathize so strongly about your fear of meds, and of treatment.
I have become so anxiety ridden about taking meds and the bad affects (mostly digestive issues) that I have from it, that I a so scared to take them.
I was at my LLMD yesterday, and although I'm on biaxin, Levequin and malorone, they want to put me on a host of other meds such as bactrum in addition and and an additional herb for babesia.
They think I've become resistant to the meds I take, which I mostly tolerate.
My anxiety is sky high, and I'm also homebound due to severe vertigo. They wanted to put me on atntidepressand/anxiety, which I refused because I am already taking too many pills.
It
-------------------- RI Posts: 440 | From New York | Registered: Sep 2005
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posted
Seek, it is "good" to hear from you. I can understand your reluctance to take pills.
After three plus years of high dose combo abx treatment - the last nine months with IV - I am not afraid of the meds. I just don't see much improvement, or much at all at this point. (Except Tigacil - which I know makes me want to puke and sleep.)
And while physically I feel much better than when I started treatment; mentally I am pure stupid. And it keeps getting worse. So I struggle just to remember to take pills.
It is hard to remember not just because I am stupid though. I am tired of it all. And based on your post it sounds like you are more tired than I am.
And full of doubt. I am planning to work on the gut (in three weeks when I expect the PICC will come out) with a just a few natural supps. And see how it goes.
I can't tell you which direction to go, but I can relate to you and wish you (us) the best.
-------------------- enjoy the day.
-jmb Posts: 208 | From Maryland | Registered: Dec 2008
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I am glad you are back. I am much more fearful of the alternative of not taking the pills than the pills themselves. For me, the alternative of letting this disease go unchecked was insanity.
Recently I got to a place that I needed a break. My eyes are swelling too but I was on drugs every day for over two years without any break. I think my kidneys are overwhelmed right now.
When you are treating babesia duncani it is really rough for months. It seemed to me that I was making no progress but then I realized that I was actually better. I had backslides though that I just couldn't understand and it really scarred me because I thought I would never recover.
All of a sudden it was pretty much gone. Not completely, but under control. No dizziness, no air hunger, no headaches, no depression or anxiety and my thinking is better. I just have the lack of stamina now.
What came out was borrelia that had been buried two years and bart - but that is mild.
You might need some psych meds to help you tolerate the treatment. I remember how hard it hit you and you would always quit because it was just too much.
You could also take a smaller amount, like Boxer Mom suggested. Ramp your way up slowly. Babesia is so horrible, I hate to see you suffer forever.
I did malarone with 6 rounds of coartem. The mepron and malarone was a crawl but the coartem seemed to give me a boost every time. I did not take breaks between the drugs - went from malarone one day to coartem the next. You do have to take a break from zithro though.
I understand the way you feel about the supplements. I have a closet full of them and have completely lost faith in them too. I really think when you are as sick as you are (and I was) that you need antimalarials and antibiotics to get it under control.
I am taking supplements half heartedly right now because I am on an abx break. I am a lot better. There is hope, so hang in there and don't give up fighting.
I hope you will get back on something.
By the way I met someone who allowed her husband to slip away with babesia. He was refusing treatment. She told me she did not know how much longer she could take care of him because he could not stand up or bath himself.
It was really irritating to me that she took such a weak stance. I told my husband this disease affects us mentally and he had better not ever allow me to get into such a horrible state without forcing me to get help.
Your wife loves you and needs you to get help. Listen to her.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
GiGi, I failed the HPU quiz miserably. Have TONS of these symptoms/issues. It's something no LLMD/doc I've seen ever addressed/tested for. It really makes me think. I'm wondering if my young daughter has it too.
Great ideas/points everyone. I do agree not treating and never making any improvements is not an option really. My biggest issue is I keep trying to balance my life working part-time from home if able. When I was treating, I had days where I was out of commission often. Not all, but many. I desperately need to bring this money in and keep visibility at my job. They have done for me what very few employers ever would given my health issues.
I have a feeling there is no middle point. It's either all of nothing. Treat aggressively or never see the light. Low-dose monotherapy never helped except for some Biaxin. Never a cure, never major improvement though.
Hearing some of these Babesia horror stories is making me second guess my approach to not treating, which is good. I can easily see how one can wind up wheelchair bound. I feel so weak some days I get scared. Legs get like LEAD.
I don't think low and slow is my answer. I tried it..doesn't work. I'm a big guy too so low for me relative to other's low is probably miniscule.
My other terrible issue is my daughter has had her share of issues lately and if I get too ill on treatment, I'm a world of hurt to take care of her or pick her up from school. Very scary.
This disease has me by the b@@@s.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
SEEK, I am here to offer hope as I am not a doc so I can not give medical advice. This time last year I was in a state of total unwellness,could not think straight,could not walk well,anxiety fear and the deepest despair I never imagined existed and so many other horrible symptoms. I sit here writing this and I am so thankful for being almost 100% well. I think that maybe take a break,reassess,and start anew in a couple weeks. Try the herbal route if you have not already,Byron White worked for me. I will put you on my prayer list, please dont lose hope. At one point I gave in and put it in Gods hands and it was at that point that I stopped "fighting" and started getting better. I know it takes some a very long time to achieve wellness and I never thought I was going to get back to my oldself. Guess what?...I have!
Posts: 342 | From northern california | Registered: Dec 2010
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posted
do you take any Benzo meds? if so you might want to look at it and make sure your not in tolerance with drawl
-------------------- LSG Scott Posts: 513 | From Boston, Cape Cod, Mass | Registered: Aug 2009
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
LSG, nope never touched a benzo, anti-depressant or any of the mind altering drugs. That's not it.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
ok seek, good glad to hear it i know for some people who have them in play and the benzo tolorance picked up where the Lyme left off, i hope you find your magic bullet soon
-------------------- LSG Scott Posts: 513 | From Boston, Cape Cod, Mass | Registered: Aug 2009
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posted
Seek, I have been taking zoloft with good results for years.I think it played a significant piece of my wellness puzzle.
Posts: 342 | From northern california | Registered: Dec 2010
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
It sounds you have active babesia. Target the babesia first, as people do get one step up when babesia goes dormant. Babesia made my legs like steel-heavy, it made me depressed, extremely foggy, confused, letargic...
Riamet /coartem hit my butt too, but it is not a single bullet treatment. I was though sure I had babesia as I improved like day - night after it. And relapsed later, of course.
So target the babesia, with cryptolepsis or other natural herbs first like full artemisia annua. You can do teas, decoctions, with herbs instead of pills. I loved artemisia annua decoctions!! It was very strong too, and I prefered that to artemisinin.
But do cleansing, as babesia for me was the MOST TOXIC pathogen I ever dealt in my life. when it dies, it pours extreme toxic stuff, at least, that is how it felt. More than with candida or borrelia!!
My throat was blocked to take pills too, it's a lyme symptom for many people.
And I guess that things that are inside the pills, like magnesium stearate or the material of the capsules can be very bad themselves. So your body may be saying, stop with these poisonous stuff! Who knows?
I would try the tea /decoction approach. Or the tinctures, like bear garlic.
I think you are very toxic too, it sounds. Or it is the babesia. Or both and still other infections.
The KPU is good idea, but it will hit your butt!!! It needs to be done with guidance, I believe.
Since my babesia went dormant, the heavy leg sydrome never returned to be as bad. And my mood improved A LOT!!!!
I was fortunate to find practioners charging 'correctly', about 80-120 euros an hour. So I could visit them without much problems. They are considered expensive for here, though, but still nothing compared to these crazy US fees!!
And plus, the medical insurance took part of the fees for medical doctors and I paid only about 15 euros for an hour for my lyme doctor. The dollar is low today, it would make about 20 dollars / hour!
At your place, I would try energetic tests. With the puzzle reaching impossible proportions as it is, with lyme disease, we need more help than mere trial and error. Energetic tests help guiding there.
Without lyme, I would never have tried energetic tests. It was lyme who PUSHED me to try, because of the astronomic size of the puzzle to be solved. I never regreted it, it became one of the most important tools of guidance (even though it is not 100% sure).
Good luck!
Posts: 6199 | From Brussels | Registered: Oct 2007
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
seek,
I still think your house has elevated mold - enough to cause all these symptoms.
But also you have not done the full parasite protocol.
HPU might be an issue, I have not enough education about HPU.
As long as you have just a bit of mold your sensitised ( MCS) body is not able to tolerate any other treatment, so your body does not accept more meds and die-off. For mold there is a test online.
Posts: 1834 | From US | Registered: Oct 2008
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posted
have you got your stomach checked? I mean seriously checked, there could could be sth there that could cause all your sx.
Posts: 723 | From Montreal | Registered: Oct 2010
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Seek, I am so sorry to hear that you've not been doing well. Please don't give up hope. Keep searching, keep trying, do whatever you can. There's got to be a way for you to get better.
Wish I had more practical advice for you but I haven't found a way to make myself well yet either.
Hang in there friend
Posts: 5237 | From here | Registered: Nov 2007
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
have you tried a session with rife?/This is such an awful disease. Sixgoofykids,can you explain the hpu/kpu/ thing.... My docs. are noe going to go after babs. and I don't and can't waste the time or money......I've had the pain upper left side, I call sleen area,...ct said ok ,dr,asked to re-read it... RA doc thinks it's a rib healing. LLMD think it's a swollen sleen. But why wouldn't that show up? This seems to go with subjects of posts. Thanks, Nonna...
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
have you tried a session with rife?/This is such an awful disease. Sixgoofykids,can you explain the hpu/kpu/ thing.... My docs. are noe going to go after babs. and I don't and can't waste the time or money......I've had the pain upper left side, I call sleen area,...ct said ok ,dr,asked to re-read it... RA doc thinks it's a rib healing. LLMD think it's a swollen sleen. But why wouldn't that show up? This seems to go with subjects of posts. Thanks, Nonna...
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
have you tried a session with rife?/This is such an awful disease. Sixgoofykids,can you explain the hpu/kpu/ thing.... My docs. are noe going to go after babs. and I don't and can't waste the time or money......I've had the pain upper left side, I call sleen area,...ct said ok ,dr,asked to re-read it... RA doc thinks it's a rib healing. LLMD think it's a swollen sleen. But why wouldn't that show up? This seems to go with subjects of posts. Thanks, Nonna...
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
have you tried a session with rife?/This is such an awful disease. Sixgoofykids,can you explain the hpu/kpu/ thing.... My docs. are noe going to go after babs. and I don't and can't waste the time or money......I've had the pain upper left side, I call sleen area,...ct said ok ,dr,asked to re-read it... RA doc thinks it's a rib healing. LLMD think it's a swollen sleen. But why wouldn't that show up? This seems to go with subjects of posts. Thanks, Nonna...
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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posted
You are not alone here. I could have wrote this post. I sent you a very long private message.
Posts: 267 | From South | Registered: Oct 2011
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I think you ought to see the same cardiologist your mother is seeing, just to clear up that possibility.
Sometimes we just can't do the drugs any more and need to try something else. There is rife, which I know nothing about. And there is the PE1, which I also know nothing about =but am getting.
In the meantime get some herbs, like crytolepis, stephania, heparin, A-Babs -
How is your diet? Stay away from food that makes your body acidic - eat more plant based ; not red meat, sugar or processed refined food.
Endorphins are good for the immune system. Try meditation, deep massage or the drug low dose naltrexone. LDN is also very good for depression.
Get netflix and order comedies - "laughter is the best medicine". Hard to do in the pits of babesiosis but it will help.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
Have you considered accupuncture? I find it helps a lot and is less expensive. For the anxiety and depression it is useful to use meds ot relax and sleep and let your body heal. If you are in a state of crisis that is hard on the body. Try thonine-its OTC can get at iherb, whole foods, MoMs any where. help with mood, not addictive. Try some of the holy basil teas by Tulsi- Keep trying things that make you feel better, baths, sleep, light music. None of us know what will work, we only know after we have been there. I am struggling with what next too. I think lots of us are. Be strong, breath deeply.
momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
Mold + Metals(HPU) = BIG TROUBLE!!!
The two together are terrible. We did some HPU treatment before we discovered the mold in our home. We moved out 7 months ago... detoxed mold and are going back to HPU treatment... while taking Buhner herbs for Lyme + coinfections.
Seek, more likely, you have a number of issues all going on at once.
When you say you are "fearful of taking pills" do you mean antibiotics or supplements or both?
I would think not being able to take any pills would make recovery very difficult.
Have you made any decisions?
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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