posted
I've been reading what many of you have to say and try to treat myself as many of you have done but I'm not getting anywhere. I'm really not sure how to get batter anymore.
I've had this illness for so long, treated since 1989 and have gotten so much worse over that past couple of years. It's really scaring me.
I have Babs/lyme/mycoplasma and probably others I don't know of. My Babs seems to be the worst. i've been treating it for over a year now with no results. Been on malarone, zithro, mepron, cumunda, samento.
The problem I mainly have is anything i take I herx immediately and spiral downhill fast. It puts me in such a weekend state, I just get sicker.
I'm trying to stay on the KPU vits. I have to say, the niacin seems to help the most. I've only been on this for a few weeks. My Babs is way out of control, I tried the parasite herbs and yeast cleansing. Everything I try I get a major reaction to. I become suicidal (but not going to do it) at the drop of a hat.
I try to build myself up with the best diet i can,
I know with my recent move from NY to AZ the stress of it all is a contributing factor.
I started Medsonix 3 weeks ago.
I'm not sure where to go from here. I know I have to treat all the parasites, yeast, kpu, babs, lyme,etc. But I can't take the herxs anymmore. I can't take feeling like I want to kill myself.
I do take detox herbs as well as charcoal, betonite clay,glutothoine, on and on. I'm scared. i can't go on this way. i have to see some kind of improvement and i haven't for some time now. I'm afraid my body is breaking down. Back in January when i was only slightly worse I did feel like my organs were shutting down.
I do have hope with the Medsonix treatments but I know i have to do something in the mean time. I used to be on low dose naltrexone a couple of years back. My body doesn't even feel right with this anymore. It flares eveything up too much so my llmmd took me off of it.
I know this is alot ot ask of all of you, but do you have any ideas for me that will give me hope?
Donna
Posts: 140 | From Phoenix AZ | Registered: Jan 2011
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Donna,
I was struggling with anxiety, depression and hopelessness late last year and found homeopathic medicine to be very helpful for this. I am no longer hopeless or depressed. The remedy I took is called Aurum Arsenicum (gold arsenate) and was recommended in the book, "The Homeopathic Treatment of Lyme Disease" by Peter Alex.
The anxiety was starting to kick up again this summer, but then I started taking GABA (an amino acid that is used in the brain as a calming neurotransmitter) and the anxiety has really calmed down, and the GABA helps me sleep in addition.
I hope this helps. Take care,
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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Thanks Razzle - haven't tried those. Both sound good. Right now I take l-tyrosine, l-theanine, b6 niacin, 5-HTP, all for anxiety and depression when needed. Sometimes nothing works and I find myself crying and crying. I hate it.
Has either of these remedies helped you in serious crisis? During crisis I get so bad, I'm having a real problem dealing with it anymore.
Posts: 140 | From Phoenix AZ | Registered: Jan 2011
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glm1111
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posted
Please look into treating for parasites/worms. Dr.K. treats all of his patents first for parasites.
Also consider the salt/c protocol as well,and visit lymestrategies for more insight on this protocol. After 4 yrs of abx, this is what turned things around for me and saved my life.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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momindeep
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I wonder if you are just plain toxic from all the die-off and your detox regiment isn't keeping up.
Not only is die-off toxic, but so are meds.
My daughter really struggled when we hit things hard with her...struggled severely...to the burning point.
She ended up not tolerating abxs anymore, like being allergic to them...so had to switch over to plants/herbs...I believe her body rejected abxs because of being toxic...heck, her body rejected any perscription...I believe abxs didn't help her much because she was so toxic...just my opinion here.
The last protocol she is/was on did not do that to her...yes, she would herx, but it didn't just about kill her like before.
And she was a lot like you, when she herxed on abxs, it was like she would never recover from it at all.
Her mental health was in the crapper too.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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glm111 I got the salt/c and wormwood combination from Kroger herbs. it has black walnut leaf, wormwood, quassia and male fern root. I got this because I saw someone here talking about it.
Now if i go on this stuff is it going to make me crazy? Am i going to get herxs just like abx? My problem is - the herxs make me so sick I can't get out of it and I keep getting sicker.
Last week I took 100mg diflucan and then again 3 days later. OMG I thought I was going to die,they crying, the suicide thoughts, OMG. I used to be able to take this with no problem.
momindeep - I do agree with you about the abx but I have tried to get off the zithro and malarone several times only to take a nose dive, and bad. I think what i am taking right now is just maintaining me, barely. I do feel like my body just can't take the abx anymore though.
I've had this for so long and I really think I was re-bitten by a worse strain of Babs about 2 yrs ago. I have been so bad since then.
I also think my mind and body are rejecting the herxs. Does this make sense? It's like I can't take it anymore and i know I have to.
I guess I', going to have to take all of the stuff slowly. Back in Jan I went aggressive with the treatment. Lots of abx, herbs, etc for babs and lyme. i was so sick. That's when i felt like my organs were shutting down. I also had visual hallucinations, bp went really high, you name it. UG. I feel like I am still feeling the damage from that.
May I ask - what was the last protocol your daughter was on? Just curious cause i know it's herbal.
Posts: 140 | From Phoenix AZ | Registered: Jan 2011
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Razzle
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posted
quote:Originally posted by darwinsdream: Thanks Razzle - haven't tried those. Both sound good. Right now I take l-tyrosine, l-theanine, b6 niacin, 5-HTP, all for anxiety and depression when needed. Sometimes nothing works and I find myself crying and crying. I hate it.
Has either of these remedies helped you in serious crisis? During crisis I get so bad, I'm having a real problem dealing with it anymore.
I wasn't in crisis with the depression, but it did take about 2 weeks of taking the homeopathy daily for me to notice a difference. A different potency may take effect more quickly - you might want to see if you can find a homeopathic physician or naturopath who uses homeopathy.
The GABA works within a couple days for the anxiety for me, and all I take is half a capsule (each capsule has 750mg, so I'm taking about 370mg/day). It might work more quickly with a larger dose, but I don't know for sure.
Another idea is Bach Floral Remedies. Rescue Remedy may be excellent for combating herxing - it helps with shock and acute injury, and deals really well with emotional stuff like emotional shock and trauma. Herxing is a kind of trauma for the body and the brain, so perhaps this may help. I get the Rescue Remedy for Kids to avoid the alcohol; and I use a drop on each temple and each wrist (rub it in so it doesn't drip or run) as needed. I get Rescue Remedy at a local health food store; it can also be ordered online - I think Vitacost.com or Supersup.com have it... (no financial connections with these websites/companies). I know Rescue Remedy can help in a crisis - it can help calm and soothe the overwhelming nature of being in a crisis.
I hope this helps...take care,
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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posted
In my opinion, the one thing I see missing is treatment for bart or BLO or mycoplasma. Many times when treating babesia other intracellular pathogens come out.
2007 was a horrible year for hubby -- first time we tried somewhat aggressive babs treatment. Bart was still very much of a problem. So we ended up treating bart aggressively for 2 1/2 years and now that it is gone hubby is tolerating very aggressive babs treatment better -- still not easy, but the neuro symptoms are so much more controllable.
The easiest thing that would actually treat both bart and babs -- don't think it will get rid of either but it is a good place to start-- would be the herbal tincture cryptolepis from Woodland Essence.
You will need to start slow and work up to high doses or add in other meds or herbs to get on top of things as you go along. By high doses I mean up to 5 droppers 3 times daily. You could also try stephania tincture -- both of these do cross the blood brain barrier especially if the dose is high enough.
It sounds to me like your problem is more one of high infectious load rather than strictly a detox issue.
If you have never taken rifampin then I think that will be needed to treat bart or BLO, but again start very slowly at 50 mg or less.
If you had access and could afford it then I think IV antibiotics would help calm your brain -- especially rocephin and maybe in combo with zithromax.
This is not medical advice, just my opinion based on hubby's experiences. 4 or 5 years of monotherapy got us nowhere, but when he started treating bart, babs and lyme all at the same time with combos of multiple low dose meds and herbs we actually started seeing real progress.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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glm1111
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posted
Since you are so sensitive, if you start the salt/c or herbs step into them very lightly.
I started with 1/4 tsp se salt and 1/4 tsp of vit c powder in a large glass of water,and sipped it slowly. You might even want to start with an 1/8 of a tsp.
The same with the herbs...start very small. You can open the capsules and mix them in some applesauce.
Starting with only one capsule. Ramping up slowly can be very helpful and less scary. Sorry, you are having such a rough time.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
Thanks Bea, Yea, I do think alot of what I am experiencing is a high infectious load. I do know i need to go really slow or i can't detox properly. God, what a mess.
My llmd said she won't put me on Rifampin because I'm in AZ and there's too much sun. I do know everytime I get on more multiple meds i herx so bad. That's what happened in january. I know my body needs it, but at the same time I just can't handle it anymore.
I do have the cryptolepsis at home and I guess I'll just have to bite the bullet and go on it - slowly.I've never heartd of the stephania tincture, but I will look into it.I also find boneset tea to be helpful.
I guess one of my biggest problems is still going to be the deep depression the herxs cause. I feel like I've been traumatized too many times. It's like I;m damned if I do and damned if I don't.
My funds are getting low so I really need to be choosy. Doing the Medsonix is expensive also, but I do think it will help...eventually.
Razzle - I am going to get the Gabba - having another weapon will be good. I already have the rescue remedy - yea it does work pretty good but doesn't have a lasting affect for me.
Thank you ladies, for helping me. You're really a life saver! I feel like i get so much more here than even my doctor. I go to the one in NY and his name starts with an H and ends with a Z. They don't even bring up KPU or parasites. There is just so much more to Lyme now than there ever was. I've been at it a long time and it just keeps on getting more and more complicated every year. Grrrrrrrrrrrrrrr
Donna
Posts: 140 | From Phoenix AZ | Registered: Jan 2011
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posted
Gail-thanks for the recipe and the advice to go slow. Yea, this makes sense. I need to feel safe without the suicide thoughts. Even though I'm not going to do that, it's just too awful to even think about it.
Posts: 140 | From Phoenix AZ | Registered: Jan 2011
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
I'm with Bea. Your infection load sounds very high.
When you say you've been treating Babs for one year with no results, what do you mean? If you are herxing, those are results.
If you are herxing more than you can handle, you need to back down on med dosages and increase the detoxing.
I spent my first year of treatment, for Lyme and Babs, on pediatric doses of multiple antibiotics. I herxed my face off! Depression, crying, suicidal. Profound exhaustion. Totally brain-dead. The works.
But I made enormous progress. Now, I can handle adult doses of antibiotics, plus antimicrobial herbs. I could not tolerate herbs with my antibiotics during my first year of treatment. It increased my herxing too much.
Have you been consistent with treatment, or have you stopped and started many times?
I've developed both yeast and C.diff in response to over 3 years of oral antibiotics. I've needed more antibiotic breaks than usual in the past year. These breaks have always resulted in pretty big relapses.
I don't know the mechanism, but it feels like these microbes become more aggressive when they feel threatened. I can hit a symptom-free week in which I feel absolutely wonderful, but if I have to stop my antibiotics for over 2 weeks, my symptoms come roaring back.
It was not like this in the first years of treatment.
I've decided that I need to stay on my antibiotics, with minimal or no breaks until I'm symptom-free for many months. And I need to be vigilant about keeping the yeast and C.diff under control so I can stay on antibiotics.
The members who are similar in response to you have found that they can treat and make progress if they start with tiny doses of antibiotics, and only increase when the herxing slows down. If 100mg of Diflucan is too much for you, maybe you need to start with 25mg.
Pulsing also seems to help those who herx too violently. They take antibiotics maybe 3 days/week.
If you feel like your organs are "shutting down," I think that is because of infection. I've had MAJOR herxes, but I've never felt like my organs are shutting down. I feel my worst when my microbes are reproducing unchecked (meaning not on antibiotics).
The whole key to Lyme is figuring out what works for you, and then sticking with it. Yes, it's lots of trial and error, but once you find your path, lots of stress is alleviated. When you hit a bump in the road, you fix it, then just get back on track.
I worry about people who think they need high doses of antibiotics for treatment to be effective. The effective dose is what works for you. And as your pathogen load comes down, you will need to increase dosing. But that can take years.
I don't know much about Medsonix, but I hope it works for you. If you feel you need something in between, why don't you start a post for the "low and slow" group, to see what's working for them?
I don't necessarily mean monotherapy. I do think you need to hit more than one infection at a time. But you need dosages that you can tolerate.
And always ramp up. I'm in year 4 of treatment, but I always ramp up when I'm on multiple meds. I usually add a new med every 3-4 days, until I'm on the full program.
If you are super-sensitive, you may need to add a new med every 10 days. Don't freak out. You will find what works for you.
Thanks for your reply. You really put so much into it and I really appreciate that!
I think where part of the confusion comes in is - I'm in the 22 year of my treatment with hardly ever a moment without abx.
I have been alot more well in the past. Actually this is probably my 2 - 3rd year of babs treatment.All the rest of the years were mainly Lyme as that were the way things were done back then.Maybe you're right. maybe I have been herxing all along. In some ways i feel I am and other ways if I go off for a day or 2 i really crash.
I have never stopped treatment for more than a week - ever.Mostly abx. I have been on only herbals and they did work for a while, but not anymore.
I think you all are right - and thanks for pointing it out - I probably do have a high infectious load. What ever my last bite was - was a doozey. It sent me over the edge after so many years already in treatment.
The time I had when i felt like my kidneys were shutting down i was in severe herx and was taking multiple high doses of abx. i'm still not happy with the doc for doing this to me and not happy with myself for allowing it.My body couldn't handle it. I've been going to the same doc for years and he should have known my body couldn't handle it either.
I have managed to manage my illness for 20 years. Some times it was hard, others not so hard.It's mostly been the last 2 years i am having the most trouble. I do think I have become super sensitive both physically and mentally. That is part of my problem.
Listening to all of your ideas have helped me to re-evaluate my treatment. So, i do hope I can figure out a new plan.I'm sorry if i upset anyone talking about suicidal feelings. I know many here have had the same and it's not what anyone wants to hear. believe me, I'm a fighter or i wouldn't have lasted 22 years with this.
I'm gonna have to try out a few different ways, like I have been. i just haven't found the best way for me yet. And by this I mean a more comfortable way to get by.
Now there's parasites, KPU, higher doses, lower doses, yeast, etc.Back in the early days we took mega doses of abx. I know i have to treat them all now . I just have to figure out how without going into a deep depression. I've been there too many times during my illness. There's got to be a better way at least not to have to feel that, much of the time.
I have a higher power. I've just been feeling more weak lately than i would like. i'm sure alot has to do with adjusting to the move and other problems i am facing. Stress sure plays a big role in our recovery.That i do know for sure.
I don't mean to sound like my journey is any harder than anyone elses. You all have given me alot of support, and I thank you for that. I guess i'm going through more turmoil about this lately. Time to let go and let God and make a better plan.
I used to rely more on my llmd and I have recently lost alot of faith in him also. I used to have alot more money to spend on lyme and that is not the case anymore. After 22 years with me and my daughter having Lyme I'm pretty tapped out. This is also a scary place to be.I feel like my options are getting less.
Time for me to regroup. Time for me to take it one day at a time. Time for me to let go of my recovery a bit. I feel like I am on a clock since money is running out. I will find it. I will find a way.No matter what I will be o.k. I have to keep telling myself that.
Thanks again for helping me. You guys are the best!
Posts: 140 | From Phoenix AZ | Registered: Jan 2011
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posted
Have you read Stephen Buhner's book, Healing Lyme? He discusses herbal protocols for Lyme and co's.
Posts: 13117 | From San Francisco | Registered: May 2006
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
I would give you my daughter's protocol, but it is suited just for her. I am sorry...we utilize energy medicine along with her LLMD, so it fits her particulars.
Hope you can get to the bottom of this...it took a decade to get my daughter well...but we know so much more these days, thatdefinately is in our favor.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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posted
You mentioned that you crash within a week or two of stopping antibiotics. That points to bartonella or possibly babesia as main issues rather than lyme.
SAM-e is probably one of the best supplements that hubby uses for mental health. He takes 400 mg daily, but if he is having a really bad day I have him double the dose.
He never had much luck with oral gaba but takes passion flower tincture which increases gaba. He uses Natures Answer brand and gets the 2 ounce bottles from Vita Cost. This is what he uses for sleep. He takes 5 or 6 droppers full and adds a couple of droppers of kava and 1 dropper of hops. It is a lot of herbs, but he seems to need the higher doses.
It is hard to say with hubby, but I do think babesia makes him more depressed and moody than bartonella. Bartonella I think made him more angry and nervous/agitated. Both infections can defintely affect you psychologically.
The stephania tincture is also from Woodland Essence. When hubby was on higher doses of cryptolepis and later on stephania the company gave him a 10% discount if he ordered multiple 8 ounce bottles of herbs. You could try calling and asking for a discount if the herbs seem to help.
Good luck.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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I can understand your frustration, as you have been at this for too many years. You've sought out, who I would consider one of the very best, if not the best doctor treating today.
Are you in the Yahoo support group in AZ.? I say this because there are a few very experienced lymies like yourself, (springshowers and hadlyme) One of them also used to see Dr. H. in NY. and recovered, then had a relapse.
My recommendation is to seek out the very best, most experienced practitioner who does muscle or energy testing. This illness is about finding out what works for you and YOUR body. After treating for so many years, seeking out a practitioner will only corroborate your own intuition. You can test to see what drugs work, and what don't, and at what dose.
You may have an overgrowth of candida, and that could be why you aren't handling the antibiotics and reacting so severely to diflucan.
I hope that you find a treatment path that gets you back to feeling good and on the road to recovery....
Posts: 964 | From san diego | Registered: Oct 2009
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posted
Robin - thanks for reminding me of Buhner's book - yea I really have to get that one.
Bea - I have heard of good results with Sam-E. That's one I haven't tried. For bedtime I take 50mg trazadone,, 1/2 flexerol, .5 ativan - puts me right out for the night - LOL
Baileypup- I have gone to a doc who treated me with muscle testing and yes it was helpful. My h will do it on me when I'm in a crisis to figure out the new plan. And - yes, I forgot - Lyme brain.LOL Also, good thinking about the over growth of yeast.. I think you're right. I'll check into the yahoo group. I'm usually here, so I need to spread my wings a bit more.
I've been taking alot of notes. The notes are making more sense to me. Before i went to be I started the cryptolepsis - 2 drops. Woke this morning feeling it. Heads o.k. though - good thing. I'm going to have hubby do some muscle testing today. This will help me make a plan.
I really think my brain was on overload to sort it all out. Thanks for helping me do that.
Posts: 140 | From Phoenix AZ | Registered: Jan 2011
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karenl
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posted
Did not read your post - but people who posted your sentence later on all found parasites. Just statistics.
Posts: 1834 | From US | Registered: Oct 2008
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posted
Thanks I agree. I think I have another long road ahead of me. I'm sure I have all kinds of problems. I;m just gonna have to take it slow.
Posts: 140 | From Phoenix AZ | Registered: Jan 2011
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posted
So, I started adding some herbs to the mix.
Went back on Boneset tea -helps with pain, sweats, chills, stimulates immune system.
Went on Red Root tincture - took 20 drops last night - lymph system stimulant and tonic. Anti-inflamatory for liver and spleen - clearing and draining.
Samento - but i started that last night.
2 drops cryptolepsis
Woke up this morning herxing - lots of detox today
Posts: 140 | From Phoenix AZ | Registered: Jan 2011
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annxyzz
Frequent Contributor (1K+ posts)
Member # 20404
posted
I did not get far with drugs. I have improved significantly with: rife emem machine grapefruit seed extract drops Artemesia annua ( herb Pharm)
These have REALLY helped !
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Depression is very much babesia but it seems like you should have had some improvement by now unless you are experiencing another infection as well. It takes a high dose of mepron/malarone to affect babesia duncani.
Bartonella causes irritation/rage. Do you have any symptoms of Bart: sore feet, painful shins, muscle cramps in buttocks or thighs, need to urinate frequently, feelings of depersonaization?
I found Coartem helpful and the malarone seemed to be more effective afterwards. I did six rounds of it a few weeks apart. At times I felt nearly normal. You might also try pulsing Artemix which is a mixture of artemesinin, artesunate and artemether (the second "drug" in Coartem).
I just started LDN and it seems to be helpful. But if you have bart, I would be afraid it would really set off the insomnia (why I never took it before). You could try it again at a very small dose. I am doing 1.5 mg. One of the research doctors at Penn state says it is ok to take it in the morning if it bothers your sleep. This drug is very tranquilizing for me. I feel calmer and happier with a much higher stress tolerance. It boost endorphin production.
For detox Alpha Lipoic Acid is really good. You can also take the amino acids that are precursors to glutathione; L Methionine and Acetyl L Cysteine. Better yet, you could ask for IV glutathione. Dr. B says he has seen it give relief in minutes.
I think it is a good idea to get your vitamin D levels checked because it is so important to immune function and some people cannot manufacture it in their skin.
I have lost confidence in herbal remedies. I am going to a new LLND next month that I know is big on herbs and maybe she knows what she is doing. I sure hope so.
I hope you find a new approach - the missing piece to the puzzle, be that an infection you are missing, detox, or ways to strengthen your immune system.
-------------------- 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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sparkle7
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posted
I don't know much about the drugs but start slow with any anti-parasite herbs. I "herxed" much more profoundly from the anti-parasite herbs than any drug I took.
At first - I could only tolerate 1 Parastroy cap (of each) a day. I had to ramp it up very slowly. I got really sick from any anti-parasite herb or combo - even Nutramedix Cumanda...
For me the herx was increased pain. It did pass but it's come back again & I'm going through it once again. I felt alot better but I stopped the herbs for about a month & I'm back to square one.
I think it depends on what you have to treat first. We're all different. I think the energetic testing is a good idea if you can find someone good. Or maybe try learning to dowse for yourself...? It helps me.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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