Topic: Those who have successfuly treated Babs Duncani, need advice. Fresh out of Hospital
lymetwister
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posted
Spent 5 days in PCU for crazy Tachycardia, Postural, but not Orthostatic (BP ok). IDSA Dr. from hospital was sold on Babs as I have Pos. IGG from Labcorp and pos. PCR from Igenix.
Many of you will say I'm crazy, but I'm trying Steroids in order to treat for a month and then will taper off. The terrible head pressure and emotional lability is a bit better, but I'm full dose Mepron again x 6 days with Z-max and Artiminisin. I want to hit this from every direction.
Still have lots of head symptoms, just more tolerable by about 30% if I had to guess.
I'm also back on IV Rocephin 2gm/day and a new PICC line.
In addition, I'm trying to fix some Hormonal problems. Testosterone was in the dirt again. Dopamine and Serotonin are low, so I added L-Tyrosine and 5-HTP.
I'm still waking up with horrible tremors (Internal). Now that I'm 6 days in, it seems the fatigue, yet wired and tired is hitting a bit harder.
I still keep getting so short of breath doing nothing at times and at other times, I can be walking around and NOT be out of breath. It does feel as if I'm in a flair today. I don't want to take Xanax or the like b/c of the Sedation I already have. I know I just have to try and push through this, but curious if it's so normal to feel this awful. Nevertheless, I'm out of here in about an hour to take kids school shopping.
I don't have flu symptoms and my body temp is much better with the current treatment.
I'm back on Androgel for the Testosterone issue.
Not sure what else I can be doing. It's funny b/c the Steroids are suppose to give energy, but I feel like I have none. My dose is 40mg 2 x day of Prednisone. I have wanted to try this for a long time and held off b/c of the negatives from everyone else, but it does seem to be helping with the intolerable head pressure and other crazy pains in the head.
That bouncing up and down feeling is back in full swing, so I'm sold that this is def. a Babs symptom. HR is under control without the use of heart beta blockers.
Appreciate your feedback...
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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nefferdun
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Yes, you guessed right. I think you are crazy for taking steroids. Completely counterproductive. Makes no sense to me at all and I think it is a serious mistake.
Of course the steroids are not boosting your energy. You have babesia! Steroids will send the infection into overdrive.
Perhaps try LDN instead - low dose naltrexone. It produces more endorphins to boost and regulate your immune system. It will help with tremors (used in MS) and pain if you have it. It will reduce inflammation and help with mood. I am getting it myself tomorrow.
Try googling LDN. It is extremely interesting. For years doctors have given steroids for autoimmune diseases and inflammation believing the immune system was over zealous and needed to be calmed. Now they are discovering just the opposite is true. When the immune system is out of wack, boosting it helps to regulate itself better.
Having dealt with disease for so many years, we are stressed to the max. This makes us low on endorphins and weakens the immune system. LDN has helped patients with AIDS, MS, ALS, Crohn's, cancer, and lyme.
I would tell you to try Coartem but with tachycardia that is not a good idea. I just finished my fifth round and feel well today. I know this is temporary but it is a moment to savor.
-------------------- 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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karenl
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The steroids can be your end - they will work over a whole year and suppress your immune system.
Internal vibrating is parasites and now you add steroids so they can duplicate even better. You will have a very rough time. Sorry for your kids.
Posts: 1834 | From US | Registered: Oct 2008
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sutherngrl
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I have been treating lyme for 3 years and 3 months. After the first year, I stopped temporarily and took steroids. Long story!
Anyway, I noticed that after the steroids, when I went back on antibiotics, that I finally began to improve. Don't know if the steroids triggered something to work right or not. The negative is that after that, is when the mental side started to deteriorate.
Once I started getting well physically, I started falling apart mentally. I guess I can't say for sure how the steroids effected me, but I am just giving my experience.
I would never condone the use of steroids with LD. I took them because I thought something else was wrong with me at the time, but then figured out that it was lyme for sure. I finally got a positive lyme test to confirm it.
Why are you taking the steroids?
Posts: 4035 | From Mississippi | Registered: Jul 2008
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lymetwister
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Ok, so I expected to hear the Steroid responses. I will discuss the Cortem with my LLMD.
I would appreciate other responses perhaps without the Steroid comments. I am well aware of others experiences, however, I do believe I need them and I do believe they are helping for the time being.
I won't be on them for much more then a month. The goal is to turn off the immune response as the Cytokine Storm is just way too much. I am no where as bad as I was prior to this last hospitalization. Too much Cytokine release= Encephalitis / Encephalopathy = Emotional stuff, brain swelling sensations, etc.
Thanks again everyone....
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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Sammi
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Did your Lyme doctor prescribe the steroids? If not, does he/she know you are taking them?
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lymetwister
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YES Sammi.... It was his idea...
We have discussed this for some time now. It's a last ditch effort to treat the Brain symptoms so that I can continue on the Mepron, Artiminisin, etc.
This is a personalized plan for me.. We all have this differently, so what doesn't help one may help another.
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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Sammi
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lymetwister, I wish you the best.
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blinkie
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posted
have you tried cryptolepsis?
Posts: 1104 | From N.California | Registered: Jan 2008
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karenl
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I think your diagnosis is wrong and you need to start at the beginning.
Mold, parasites, viruses...you are too fixed on one thing and not getting anywhere. This is just my personal experience, if you are not getting better you treat the wrong thing.
Sure you also have a big babesia problem but it is not the main problem. At least it does not respond to treatment as long as another thing is not fixed.
Posts: 1834 | From US | Registered: Oct 2008
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lpkayak
Honored Contributor (10K+ posts)
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posted
well- i didnt read it all but i know that over the years many times llmds have told me certain short term use of steroids is ok and often necessary
i know first hand of pred right away making bells palsy go away
i think there are times when it is ok-a month is short term
anyway-good luck. most of what was written i cant understand cuz having a bad day
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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kgg
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posted
IMHO, if you are on antibiotics then you don't have to worry about the steroids. The greatest danger is when there is no antibiotic coverage.
Hope you feel better soon! Karen
Posts: 1685 | From Maine | Registered: Jun 2004
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tick battler
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posted
I would ask your LLMD if you can add grapefruit seed extract - work up slowly to 10 to 15 drops twice daily in water/juice. The brand we like is Agrisept-L by Nutridiem. It is what helped us overcome babesia when over a year of Mepron/zith/artemisinin could not.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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lymetwister
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quote:I think your diagnosis is wrong and you need to start at the beginning.
Mold, parasites, viruses...you are too fixed on one thing and not getting anywhere. This is just my personal experience, if you are not getting better you treat the wrong thing.
Sure you also have a big babesia problem but it is not the main problem. At least it does not respond to treatment as long as another thing is not fixed.
Karenl,
I don't know how to take your post as it is written in fact pretty much. I would ask how you come to the conclusion that I am not properly diagnosed.
I have been tested for everything one can have with Lyme and I have 4 Dr.'s. One is an IDSA Dr. who knows Chronic Lyme, one is an LLMD, who has established a great name for himself in getting people back from the dead, another is a Toxicologist, who is incredible with all of this (treating Lyme & Co., Methylation, KPU, etc.), and lastly, an Integrative Dr. that helps with me trying to keep my body in balance.
On top of that, I am an RN x 20 years and have spent 2 1/2 years researching this stuff on my own. I have ran every possible Lab test, scan, etc. on myself to rule out anything and everything.
If you have followed me on here, you might notice that my lack of progress has to do with Stop/Start/Stop/Start because of the probably 40 or more Encaphalitis scenarios I have gotten myself into by pushing through treatment to reduce bacterial load.
When I stop, it has been spinning wheels as the bacteria just grows back and the Brain Herxing has been for nothing. My current approach appears viable and thus far, I have tolerated 6 days of the treatment I outlined above with the addition of some homeopathy above. I woke up this a.m. for the first time in a long time with my Pillow drenched from sweat. Other than lacking the sweats, I was told from the get go, with a LLMD that I only used a few times, that Babs was my biggest problem and I was "Loaded". I have been told this by many other Dr.'s and Lymies all along.
So, how you come to your conclusions is beyond me. I only write this back to you in order to caution you with your words so that you don't confuse someone else or get them off course. Your own personal experience is nothing more than that and we each have our own. Please remember this when you comment to others.
Everyone hear means well, and this is why I post from time to time and ask for opinions, experiences, etc. Conjecture is one thing, and you didn't offend me, so you know. Again, I would just caution the way you word things to others in the future and nothing personal.
Thanks to everyone else who has commented. I do feel like I am really hitting the Babs now. Some of it is quite uncomfortable, but NO ENCEPHALITIS / ENCEPHALOPATHY so far. The Steroids are working !
Will update everyone as I think this could be big for many of you who have to Stop/Start because of unbearable Head Stuff. The Steroid No/No may be a little overplayed and may be necessary for 10-15% of people here that don't/won't try it b/c of all the downplay they have gotten.
Just something to think about. Hope your all fairing well. :-)
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seekhelp
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Gary, if it works, it's worth it. Like you, I never tolerate hardcore treatment because the head pressure/sensations are unbearable. Sometimes there is NO choice. Good luck.
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lymetwister
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Seek, have you ever considered what I'm doing ? Might be worth a shot. I'm telling you that I am having lots of symptoms still, but they are more tolerable.
I'm not walking around feeling like my head is going to explode. Even the head pains are better.
I feel very off balance and some weird misfiring all over in the head that changes with body position. That bouncing around sensation is really exacerbated, but I think it means I'm hitting it.
I'm sweating indoors with the AC on high, which is new for me.
My mood is better overall.
Your one of the ones that I would put in the 10% group.
I'm taking Prednisone 40mg 2 x day. I think I put that above.
Gary
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sammy
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Hey Gary, I just wanted to wish you the best of luck.
I'm glad that this treatment seems to be helping and that you've found something that you can tolerate. I look forward to hearing more of your improvements soon
Babesia is something that I continue to struggle with despite extensive treatment. If I could find a way to reduce the symptoms and get rid of the infection I'd be so thrilled.
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Catgirl
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It's my understanding (new Burrascano dvd or Under Our skin--can't remember which one had the info) that steroids can cause permanent damage and are to be avoided by lyme patients at all costs.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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jackie51
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Glad to see you are getting a handle on the babesia.
Do you have lyme? If you don't, then I would guess the steroids would be okay. I've always thought that steroids were a risk, but if you're willing and you're under appropriate care, then by all means, do what works.
Me? No way Jose. But, I'm not you.
Good luck.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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I probably have not talked about it too much, but hubby was on 30 mg of cortef and took about 6 months or so to taper that down to his current dose of 5 mg. His LLMD put him on it 3 years ago I think when he ended up in the ER and hospital -- too tired to remember exactly right now what it was that triggered that particular crash.
Anyway, hubby has had no obvious negative effects from that treatment. He was on low dose (100 mg) mino and low dose Zithro (300 mg) most of that time as far as I remember. Since you are on Rocephin which is much more powerful than the meds hubby was on I really don''t think the steroids will be a problem -- but your dose is pretty high as I am sure you are aware.
My suggestion would be to check into using either low dose Benicar or low dose lyrica -- one or the other might help with the head pressure.
I am somewhat concerned about the use of 5 HTP. Yes, you need serotonin, but if you have brain inflammation it is most likely being diverted and converted into quinolinic acid which is a neurotoxin.
The way around this is to take resveratrol (Japanese knotweed source) per Buhner. I have mentioned this many times in the past. Hubby did have a bloodtest once years ago which showed elevated quinolinic acid -- this was after he got sick but before he had been diagnosed with lyme. MetaMetrix did the test, but I am sure there are other labs which offer this test.
Hubby just got back from an appointment with a new LLMD. Not sure exactly what to make of the new plan to treat his babs. It is definitely an approach he has not tried before. Will post that info in a separate thread.
I do agree that babesia requires some sort of ongoing continued extended treatment. A few days or a few weeks of meds here and there is just not going to get you anywhere. I think it is worth taking a few risks if needed so that you can get the meds into you.
We wasted several years because hubby did not have a team who would prescribe adequate symptom control meds so he could do high dose antibiotics or anti malaria meds. Even now the neurologists can't really explain his dystonia or muscle rigors or freezing up spells or whatever label you want to put on his episodes.
If your docs agree you have encephalitis then at least that is something they more or less understand and should be willing to prescribe symptom control meds as needed. And that doesn't make you a weak person -- it just means you are sick and your body is overwhelmed and doesn't react in normal ways to stimuli.
Good luck with the current treatment plan. I really think that if you can gets the babs load down then you can move on to treating the lyme and ehrlichia and bartonella or whichever other coinfections are still active. I do think hubby finally got rid of his bartonella or BLO or mycoplasma or whatever it was -- and it was only after getting rid of that one infection that he has been able to tolerate the aggressive meds he is taking for babesia.
In your case the babesia may be the "KING BUG" as hubby says and treating that will be the key to getting you on the path to recovery.
Good luck.
Bea Seibert
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nefferdun
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Treating babesia cleared up my mind. The only major symptom left right now is breathlessness when I exert myself and bouts of air hunger when I am flaring. Otherwise I am doing very well.
You need to get the babesia under control and that takes time. THere are other ways to address the inflammation in your body and brain. There is IV glutathione which will do more to detox than anything else. Dr. B reports many people experience relief in minutes of starting the IV.
Like I said LDN is very good for inflammation and is now being used instead of immune suppressing drugs for autoimmune diseases. It is old school the think the body's immune system has gone haywire and needs to be calmed down. They have discovered just the opposite is true. You need MORE support for the immune system to help regulate it.
-------------------- 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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