posted
My wife has been on IV meds for the last 18mths, Vanco,Cefotaxamine,Primaxim,and now Penicillin G.
Her worst syptoms are these "spells" her bodys stiffens up, muscles twitch and severe neuro pain.
When they occur, Xanax does help to relief some of the symptoms but they take a heavy toll on her.
She has had almost every test know to man, no abnormal results and the spells have been almost daily for the last 6 months.
She is also now on a low does of Mepron. I am wondering if it isn't Bartonella and if the Mepron/Zithromax IV might not be the way to go to get some relief??
We feel very discouraged and almost running out of options, our LLMD is very good but last appointment he asked us if we had any ideas why she wasn't improving?? I wish we knew!!
Any ideas on anything that might help with the seizure like spells?
Posts: 52 | From Illinois | Registered: Nov 2009
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Keebler
Honored Contributor (25K+ posts)
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posted
- I'm so sorry to hear this. Seizures have educated me a lot over the years.
But, I'm just too tired to detail what has helped me. With leaf blowers coming down the parking lot, I have to go hide under the bed for an hour or so.
Right now best helpers: MAGNESIUM & FISH OIL. HOLY BASIL (herb).
Be sure NO ADDITIVES - at all - in any foods. Avoid even "natural flavors" as they are chemicals and can be MSG.
NO GLUTEN.
NO ADDED Glutamate or Glutamic acid
AVOID ALL FLUORESCENT LIGHTS (use only the old fashioned incandescent bulbs)
MOLD EXPOSURE? CHEMICALS? New furnishings?
Go scent-free through the house.
I'll be back later. Hopefully, others will reply, too. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- Managed to find a set of links for you: ------------------------------------
Identifying Environmental Illness and Mold Exposure in Patients with Persistent Lyme Disease.
Lisa L. Nagy, MD Video $15.
(She is NOT A LLMD, however, she understands the kind of toxicity issues faced by many with lyme. She did not have lyme but overcame very serious MCS. She spoke at the recent ILADS conference.
It's a great presentation to see. The DVD can be ordered. Great detail about toxicity issues also here:
If you have a GAS FURNACE or STOVE: call a professional to check the lines and all connectors.
Air flush home at least twice a day, a full flush, especially on top levels.
Use Exhaust Fan on stove top just before turning burner on and again just before turning off. Open window when at all possible, too, when stove is on. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- HEAVY METALS? Not sure what her tests show on that but most with lyme also have heavy metal burden that continues throughout treatment.
Specific action is needed as most of the typical supplements cannot address this.
If her LLMD is not well versed in heavy metals treatment or has no referral for that, you might ask your local support group leader and members for suggestions.
===============================
As for possible seizure activity not showing on any of the tests. That is often the case. EEGs miss a lot, especially if deep brain - or if from toxicity issues (that part is my estimation).
As anyone can have a seizure from too many toxins, I'm thinking that those kinds of seizures may not be coming from a place in the brain (though certainly the brain is affected).
- a QEEG is often better than an EEG at finding the kind of seizures that those with chronic fatigue-causing illness encounter.
This is because the fatigue (caused by infection, heavy metals, etc.) causes slow brain waves with spikes -- and that can set up a person for seizures.
Most neurologists just don't accept slow brain wave activity as important. But Myra Preston, Ph.D. has shown that it is, indeed.
And so has my brain. On repeated EEGs that failed and the 3 QEEGs that found the seizure site that sparked from a sensory startle (in my case).
These 3 QEEGs were each done by different professionals over 2 years' time. All the same result. But medical doctors just don't accept this.
QEEGs are not Uusually covered by insurance and usually not done by neurologists. Some psychologists, audiologists, naturopathic doctors use QEEG.
Sure was in my case. Still, there's a lot to sort out and her body is telling her (and you) that something is going on. Now to figure out the way past it.
I'd suggest start searching for: Myra+Preston, QEEG . . . but I just checked and her site is under construction. Other sources I'm not so clear about but she's top notch and has trained several around the country.
Adrenal dysfunction goes hand-in-hand with lyme and out-of-whack adrenals can cause seizures. Even if not, seizures are a terrible strain on the whole endocrine system. What helps:
Now, if you are not already running screaming to the woods, please know that this can get better.
I feel badly for posting so much but I have spent years having to figure this out for myself. I've made a good deal of headway but, ultimately, your wife may need a better doctor.
Even with as much as I've posted, it's important to know that even the best neurologist in the world does not know all there is about the brain (but, sadly, so many think they do and fail to keep learning).
My guess would be the liver, kidney, skin (as organs of detoxification) are just overwhelmed from infection & treatment.
You mentioned she just started penicillin. Might this be an allergy of sorts?
Even meds that one is used to can cause allergies at later times.
If the meds take too much of a toll, you might consider a RIFE MACHINE.
But, it may be something more simple that can be addressed - like GLUTEN. Maybe changing a few things will be the ticket. Hope so.
I better let you go now. I meant to transition here and offer some lightness. I hope you can all relax somewhat tonight and have some good diversion and healthy escape. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- Promise, last one:
If her LLMD has not yet offered her a Glutathione IV, now might be the time. That can help the liver so much better and faster than most other kinds of liver support.
I've never had one but, for many, it helps right away.
IV MAGNESIUM, TAURINE, certain B Vitamins can also help get stores up more quickly.
Not sure if glutathione can be mixed with other ingredients or not. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I think you are correct to suspect bartonella. It does not sound like she has had much treatment for that.
IV zith can be helpful for lyme, but personally I don't think it is all that great for bart.
The best bart meds are the fluroquinolones -- cipro, levaquin or factive. And the best combo is to add rifampin to one of the 3 above meds.
The problem is that generally rifampin and mepron can't be taken together. The rifampin lowers the blood levels of mepron and many other meds.
Important question -- did the spells lessen or were they present while on primaxin? Personally for hubby that med seemed to somewhat control bart seizure-like activity in much the same way that IV rocephin did. Rocephin is supposedly bacteriostatic for bart but not bacteriocidal.
If you want to go the herbal route -- Buhner has been posting a lot of bart info in the last few months. He suggests sida acuta or cryptolepis plus arginine and some other things.
The arginine has been very helpful for hubby. But you can't take that amino acid if you have any of the herpes viruses. The dose hubby takes is 1500 mg 3 times per day on an empty stomach. It dilates blood vessels.
All of Keebler's suggestions are great -- but most of the nutritional supplements are used to control symptoms and what is equally important is to treat the infection.
But if your wife is having seizure-like activity -- even if not true seizures -- then that will depelete many of the nutrients plus the brain needs them to heal. Also "kindling" is a very real issue -- the brain gets into a certain pattern or habit if you will and over time it takes less and less stimulus to cause seizure like activity.
Hubby is off all seizure meds and his bloodslides have not shown bart for about 1 1/2 years. But it took 2 1/2 years of specific bart treatment (about 6 months was very aggressive) to get those results. Hubby had seizure-like spells multiple times daily for about the first 8 years he was sick -- so there is hope for your wife.
I thought I had read that some LLMD's think that vanco treats bart? Hubby only ever had a few doses of that in the hospital so I can't say how he responded to that med.
Can't tell from your comments how long your wife was on each med and at what point these seizure-like spells started. I think the sequence of meds and changes of symptoms needs to be very carefully analyzed to see if that will yield any clues.
Also another important question -- has your wife done any cyst busters -- tindamax or flagyl?
Has your wife had a brain SPECT scan? If not then I would suggest getting one done at Columbia Presbyterian Hospital in New York City. I can't imagine that test being normal. If it is normal then I think something has definitely been missed diagnosis wise. Note -- it is very very important where such a test is done -- can't stress that enough.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
Dr. C. says - Tics may be related to HME (Ehrlichia), Bartonella, Borrelia, or heavy metals. Seizures may be related to HME or Bartonella.
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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Keebler
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posted
- I'm so glad others are speaking to the infection-connection regarding certain Rx.
That's just not my fort� but it's so very important. I was hoping those pieces would come from those more experienced in that area. -
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Summer3
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posted
I agree about the glutathione. I had some fainting spells that my doctor believed may have actually been mild seizures (one occurred while I was in the office).
I started glutathione and they immediately stopped and so far have not returned. They occurred while I was having liver enzyme issues and I was told that sometimes liver issues can cause "head symptoms" like these.
The IV glutathione (which was mixed with other vitamins and components) lowered my liver enzymes very quickly when other methods were not working and they were continuing to rise. It may be worth a shot if you are able to get it.
posted
Can't write much, but wanted to tell you that for me, the need for detox has been hugely related to seizure activity. Huge. I'm sorry you and your wife are going through this -- I know how trying it can be.
I would encourage you to go very heavy on the detox. This is something many LLMDs do not adequately inform patients about. But, it's hugely important.
Magnesium may be helpful at all for support.
Posts: 232 | From Oregon | Registered: May 2010
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posted
Had a conf call with the Dr and he indicated that seizures are very common with his patients and recommended the following:
Stop IV penicillin G, and Mepron
Move to IV Rifampin and try a few doeses of IV gluthanione.
I have felt for a very long time that the DETOX is such a problem for her and I have some difficulty getting her to to take any more pills. Most days she is bed ridden and only functional for 3-4 hours.
I have found a topical magnesium spray (found in a post on this site) to try. Are there any other good topical detox products?
Posts: 52 | From Illinois | Registered: Nov 2009
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tickled1
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posted
Burbur and Parsley drops from Nutramedix mixed in small amount of water.
I also hear Pekana drops are good.
Posts: 2541 | From Northeast | Registered: Jan 2008
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posted
UPDATE: So my wife has been off all meds for the last 4 day and has felt a bit beter than in the past.
Her spells were 3-4 day and now 1-2, she was acutally able to go out to dinner and a movie yesterday.
My gut just tells me to take some more time off the meds and really focus on detoxing! Give the body a chance to recover.
I don't think we will lose much ground since it is a slow growing bacteria.
This is such a difficult thing to fully understand and what the right course of action really is!
Posts: 52 | From Illinois | Registered: Nov 2009
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posted
Dr started her on IV Rifampin 150mg BID, and on day 3 horrible herx, severe pain, weakness and swelling in the abdomen. She now doesn't have the will to continue to work thru it and has asked to discontinue the Rifampin now.
I am going to try and work with her PC doctor to get her the gluthanoine and possibly IV magnesium to see if we can build her strenght back to take another run at the Rifampin in 30 days or so and just now foucus on DETOX.
She is losing hope, which I think is very dangerous and I have to admit, after 2 years of IV meds, we are not that much improved from when we started and I am not as optimistic as I once was.
Posts: 52 | From Illinois | Registered: Nov 2009
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Keebler
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posted
- tmcm,
I am so very sorry to hear this for your wife, and for yourself.
For myself, andrographis helped the most to curtail seizures. But, it's not for everyone as some can get worse with it. It just is so very nice for me, though, not the entire golden ticket.
Though, probably, a better bet: ALLICIN CAPSULES (Zhang protocol).
Will post links for Buhner, and Zhang. Two different protocols that I think are the next logical step.
I did very well with the allicin protocol (but just did not have funds to continue).
or RIFE MACHINE (liver support is still vital with rife treatments) -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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Links to many articles and books by holistic-minded LL doctors of various degrees who all have this basic approach in common:
Understanding of the importance of addressing the infection(s) fully head-on with specific measures;
Knowing that support supplements are important, but NEVER enough alone. And knowing which supplements have direct impact, which are only support and which are both.
You can compare and contrast many approaches.
BASIC HERBAL EDUCATIONAL links, and
BODY WORK links with safety tailored to lyme patients,
RIFE links,
BIONIC 880 (& PE-1) links, and
LOW HEAT INFRARED SAUNA detail. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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Revised 2011 - hardcover or e-book (reduced price for "ebook")
THE RIFE HANDBOOK OF FREQUENCY THERAPY
with a Holistic Health Primer
- by Nenah Sylver, PhD
DVD is also available of author�s presentation at the Rife Conference. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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nonna05
Frequent Contributor (1K+ posts)
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posted
I'll go back and read everbody else's post in a while..but for now
Magnesium shots in deep butt muscle X's 3 a week maybe more...and
I remember Mandy from UOS movie, saying in a different interview something about her's ,and help for it. . does she have a site???? .
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Magnesium alone in a shot is very painful.
To keep the magnesium shots from burning, and so painfully so, ADD B-12 to the syringe.
The magnesium & B-12 shots really helped me. 1cc magnesium & 1 cc B-12.
Nonna,
Pretty sure Mandy from UOS does not have a site but you could search through the home page for UOS. -
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