LymeNet Home LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Tick Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Menu

LymeNet on Facebook

LymeNet on Twitter

The Lyme Disease Network receives a commission from for each purchase originating from this site.

When purchasing from, please
click here first.

Thank you.

LymeNet Flash Discussion
Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet 2020 fund drive

The Lyme Disease Network is a non-profit organization funded by individual donations.

LymeNet Flash Post New Topic  New Poll  Post A Reply
my profile | directory login | register | search | faq | forum home

  next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » Medical Questions » Tincup -- Summary you requested

 - UBBFriend: Email this page to someone!    
Author Topic: Tincup -- Summary you requested
Frequent Contributor (5K+ posts)
Member # 6416

Icon 3 posted      Profile for seibertneurolyme     Send New Private Message       Edit/Delete Post   Reply With Quote 
Will try to be brief but hit the high points!

Mid 1999 -- My husband Steve developed Parkinsonian tremor with nausea/vomiting/dry heaves -- Initial diagnosis was chronic gastritis and anxiety/depression -- Tried about 30 meds for GI, neuro and psych symptoms -- Only effective meds were Benadryl at 400 mg daily and oral Ativan at 3 mg

Early 2000 -- Correct diagnosis of heavy metal/mercury toxicity. Also treated for GI parasites. Replaced dental fillings and did chelation with IV DMPS (specific for mercury) and some Bear Garlic, Cilantro and D-penicillamine.

September 2000 -- Mercury test now normal and symptoms 90 percent improved. Fatigue and occasional tremor only symptoms left. Off Benadryl and down to 1/2 mg Ativan.

Christmas 2000 -- Felt like he had the flu and continued to feel run down for next couple of months. GI and neuro symptoms returned as bad as ever.

January - mid February 2001 -- Tried Benadryl and Ativan at previous doses and more frequent chelation treatments (weekly instead of monthly) -- Mercury retested and again normal but neither drugs nor chelation worked this time.

February 14, 2001 -- Left work on long-term disability and have not returned to work. Have never had a rash. Took inventory of raw lumber stacks at Bassett Furniture Co. in Martinsville, VA (near North Carolina / Virginia line) end of September, 2000 -- most likely tick exposure. Lumber is shipped to the plant from all over the US.

April 2001 -- Search for diagnosis is on in earnest. Total of 60 plus physicians seen in 11 different states over next 4 years. Tried probably over 100 different meds for GI, psych and neuro symptoms. Favorite diagnosis was chronic anxiety/depression.

April 2001 -- Chronic gastritis per endoscopy -- entire stomach uniformly red and inflamed

Fall 2001 -- Treated for GI parasites with very strong Nigerian herbal formula -- GI symptoms greatly improved (endoscopy 12/01 much better but still chronic gastritis)-- loss of consciousness episodes began -- later determined to be adrenal fatigue.

November 2001 -- MRI shows 2 or 3 white matter hperintensities -- previous MRI March 2001 only showed 1

June 2002 -- Finally a diagnosis -- Lyme test positive from Bowen. Also positive Babesia slide from Bowen.

Traveled to Kansas to try herbal route -- Borrelogen from Dr Jernigan in Wichita. No antibiotics up to this point. Didn't really know anything about Lyme, but thought herbs would be easier on his stomach which we had worked so hard to heal.

Very bad herx! 1st big mistake was continuing to take herbs even at a reduced dose while herxing so severely -- Symptoms kept getting worse and worse and after 2 months ended up in Kansas University Hospital where he remained unconscious for 15 hours one day. Elevated protein found during spinal tap but hospital doctors did not believe Lyme diagnosis.

Also had a positive Lyme PCR from Igenex and a positive recombinant antigen Lyme test from MDL before hospitalization.

Seizure-like episodes and myoclonus and sensitivities to noise and light began during this time frame. Some EEG's abnormal -- some mild slowing in left frontal lobe -- but not epilepsy.

September 2002 - late November 2002 -- Left hospital and traveled to Indianapolis, IN. to work with ACAM physician.

Daily nutritional IV's plus many hydrogen peroxide IV's, 12 blood ozone treatments, and 2 UVB light treatments.

Slight improvement in GI and neuro symtoms. Psych symptoms much improved with amino acids. Loss of consciousness symptoms much improved with very low dose Cortef (5 mg daily) and Florinef (an antidiuretic) -- both for adrenal support.

October 2002 -- Installed PICC line. Have had PICC line in continuously since this date - replacing as needed

Late November 2002 -- Stopped nutritional IV's and started first antibiotic -- 50 mg IV Rocephin. Worked up to 125 mg 3 times a week. Tried one IPT (Insulin Potentiation Therapy) treatment with 125 mg IV Rocephin. 2nd big mistake.

Symptoms kept getting worse and worse for one week -- finally transported to hospital from Dr's IV room when he passed out and could not be revived. Once again hospital Drs did not believe Lyme diagnosis -- their diagnosis was pseudo-seizures.

New symptoms from this time forward were severe sleep apnea and a cough.

December 2002 -- Started using IV Ativan daily PRN to stop severe shaking/seizure-like episodes. This still continues.

December 2002 -- Started using IV push Glutathione at home -- This continues. Generally 500 - 1000 mg daily.

January 2003 - October 2003 -- Tried very small doses of oral Ceftin and Doxycycline for several 1 - 2 week periods. Some slight improvement in neuro symptoms.

February 2003 -- Chest CT showed bilateral hilar adenopathy -- Histoplasmosis test negative. Retested every 6 months with some additional nodules detected over time but etiology unknown.

April 2003 -- 2nd positive recombinant antigen test for Lyme from MDL

August 2003 -- MRI now shows "several" white matter hyperintensities including 1 in a new area of brain plus mild brain atrophy -- (shrinkage)

August 2003 -- Began IV Vitamin C drips at home - 25 grams 1 or 2 times weekly. This continues

October 2003 -- Appt with Dr K in Connecticut (Lyme neurologist) -- Diagnosed Lyme and prescribed 2 months of IV Rocephin at 2000 mg daily.

Mid November 2003 - mid February 2004 -- Completed 120 grams of IV Rocephin. 1st real improvement -- neuro symptoms improved at least 50 percent but had only one really good week before starting to backslide.

Mid February - mid March 2004 -- Tried Placquenil and Zithromax for a couple of weeks but insurance would not approve high dose Zithromax. Switched to Biaxin and Placquenil for a couple more weeks but could not tolerate GI side effects.

Elevated blood ammonia detected after IV Rocephin treatment (symptoms of hepatic encephalopathy -- mostly confusion and gait ataxia -- from time to time until Levaquin resolved this issue).

May 2004 -- Appt with Dr B on Long Island -- Plan was to treat Bartonella (diagnosed on a clinical basis) for 1 month with Levaquin.
This was done in June. Next step was to use Mepron for Babesia (treated based on positive Bowen test from June of 2002)

June 2004 - late May 2005 -- Took artemesinin for Babs.

June 2004 -- Began IV magnesium drips at home based on reco from Dr B. This continues. Various amounts 1 or 2 times weekly -- usually 2 - 3 grams 1 time per week.

July 2004 -- After 10 days on Mepron and Zithromax broke out in a full body red rash and had fluid retention of 10 pounds. Dr B relied on diagnosis of medication allergy made by primary care physician. Stopped Mepron but continued Zithromax at low dose.

August 2004 -- 2nd appt with Dr B on Long Island. Wanted to do 2 additional months of Levaquin for Bartonella based on current medical literature.Did this mid August - mid October but as far as we could tell Levaquin did not do anything positive to improve symptoms.

October 2004 -- 4 hour appt with Dr Patricia Kane -- lots of changes to nutritional supplements. Very very informative!

Mid October - mid December -- Switched to Doxy for Lyme and Lariam for Babesia -- could not tolerate psych side effects of Lariam so stopped it but continued Doxy at low dose.

November 2004 -- Diagnosed with costochondritis (inflammation where ribs connect to the sternum) -- this continues to flare up from time to time

November 2004 - December 2004 -- Did Kane protocol with IV phosphatidyl choline and IV Glutathione. Used total of 75 vials IV choline -- much less than recommendation of 2 - 3 vials 3 times daily 4 or 5 days per week (reco = 24 - 45 vials weekly!) Reco based on fatty acid test. Think this helped some but cost is prohibitive.

December 2004 -- Appt with Dr C in Missouri -- Plan was to treat Babs then Bart then Lyme. 1st tried Flagyl for a couple of weeks -- could only tolerate 1/4 pill due to neuro side effects. Flagyl did stop sweats.

January 2005 -- Within a week of starting Clindamycin developed severe diarrhea which lasted 3 weeks -- stopped meds and of course colonoscopy was normal. By trial and error found that Olive Leaf extract would work to keep GI bacteria in balance.

Late January - late May 2005 -- Clindamycin/quinine/amoxycillin protocol for babs. 1st two months neuro symptoms improved at least 50 percent and cough went away(actually felt even better than improvement on IV Rocephin) but gradual downhill slide during last two months -- sweats started coming back while on this drug combo. Treated for 4 months based on prior recommendation of Dr B that Babs requires 4 -6 months of continuous treatment.

June 2005 -- moved on to Rifampin for Bart. Worst herx since herbs in Kansas. Total of 12 Rifampin pills in 10 days. Waited about a week and switched to Cipro for last 5 days per Dr C.

And that's the short version of Steve's story.

Primary symptoms from beginning of illness to current are:

GI (nausea at least 50 percent of time daily for most of last 4 years/some vomiting/dry heaves during seizure-like episodes),

neuro (tremors/myoclonus/seizure-like episodes/loss of consciousness/freezing up or in my words transient quadriplegia).

Other symptoms which are more variable are light and sound sensitivities and sweats and cough. Steve has not had any significant joint pain or swelling.

In my opinion if Steve were to stop all tick-borne treatment he would end up in a psych ward again within a month or two due to the severe tremors driving him crazy and loss of sleep.

We tried stopping all nutritional supplements once or twice during the last 4 years and seizure-like episodes became more severe and loss of consciousness episodes more frequent.

Cognitive symptoms were much improved initially on Rifampin and moods are as stable as they ever can be given the severity of symptoms. I have to tell him 10 times a day that he will get better if he can just be patient a little longer !

The truth of the matter is that if we could find a LLMD who would be willing to hospitalize Steve and could provide enough symptom relief so he could tolerate full dose meds (preferably IV) I am still confident he can beat this and even make a dramatic recovery.

Or a 2nd alternative would be to prove by tests that he actually has Lyme, Babesia and Bartonella. Steve is still not fully convinced that he doesn't have some other progressive neurological disease such as MS, Parkinson's or ALS. I believe in the tick-borne diagnoses myself because from everything else I have read nothing else comes close to explaining all his symptoms.

The big dilemma is what to treat next -- Babs, Bart or Lyme. And should we consult yet another neurologist or LLMD ???

Thanks in advance to anyone who reads this and has any suggestions.

I had one doctor (not an LLMD) get really mad at me when I told him that with Steve I had learned to question everything! I believe that inquiring minds like those found on this website are what it will take to make some real breakthroughs in diagnosis and treatment of tick-borne diseases.

One of our favorite Dr comments and its actually in writing is "A strange man with a strange presentation." That Dr was so right for so many wrong reasons !!!

Bea Seibert

[This message has been edited by seibertneurolyme (edited 19 June 2005).]

Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004  |  IP: Logged | Report this post to a Moderator
Troup Brazelton
LymeNet Contributor
Member # 6297

Icon 1 posted      Profile for Troup Brazelton     Send New Private Message       Edit/Delete Post   Reply With Quote 
You may have covered this and I missed it, but has Steven tried to replace stuff like magnisum(sp) or tryed to remove toxins by taking some of the more popular drugs for reducing cholestreol? I also missed where he was taking any Acidophilus
Posts: 219 | From Aubur,Al. USA | Registered: Oct 2004  |  IP: Logged | Report this post to a Moderator
Frequent Contributor (1K+ posts)
Member # 4851

Icon 1 posted      Profile for riversinger   Author's Homepage     Send New Private Message       Edit/Delete Post   Reply With Quote 
I see now why not to try Flagyl again. What about trying Tinidazole instead of Flagyl? It has less neurotoxicity in some people, and will also treat cyst form of Lyme, as well as Babesia when combined with Zithromax. Sounds like he had some response to Zithromax, if you could get insurance to pay. The Tinidazole can be pulsed to reduce the side effects.

Sonoma County Lyme Support
[email protected]

Posts: 2142 | From California | Registered: Nov 2003  |  IP: Logged | Report this post to a Moderator
Honored Contributor (10K+ posts)
Member # 5829

Icon 10 posted      Profile for Tincup         Edit/Delete Post   Reply With Quote 
Well good morning to you! You have been busy!

You certainly know how to make a girl's head spin with all this information! I DO appreciate the effort to make the time line and hit the highlights. Good work.

What follows will be my scattered thoughts on this and that because there is no way I can write or talk out an organized bunch of things right now. I hope you can follow and take each item in context and consider them as part of the big picture.

I will number them.. not due to importance.. but to help me keep MY thoughts flowing.

1. I am not a doctor.. we all know that.. but just for the record I will say it. I wouldn't even BEGIN to think I could carry Dr. B's or Dr. C's socks when it comes to this topic. I can only go by personal experience and what I have seen after dealing with at least 45,000 patients questions, requests, postings, etc. The following are my opinions only.

2. Of all the folks I have had the pleasure to chat with.. and assist if possible.. the first most common question I get is..

"Where can I find a doctor?"

The second thing people ask for help with is the medication doses and problems of not being able to tolerate the doses they are prescribed. I have publically stated many times I can NOT take the "normal" doses most folks are considering doing.. or ARE doing. I get too sick... be it sensitivity, herxing, having multiple infections, or having many LONG term infections, whatever.

At this point.. I REFUSE to go through the horrible stuff like I see happen all the time here and have been through.... the ER, hosp admits, make me wanna die stuff... etc.

Been there, done that... still sick.

If I were your husband.. I would BEG for an alternate diagnosis at this point... and perhaps that is where he is mentally?? In my mind.. ANTHING would be better than living with the horrible stuff he goes through with antibiotics at the high doses and without.

Plus.. he probably feels his choices now are not great. My guess is he feels he should either take the doses prescribed to kill, kill, kill .. or take nothing.

There IS a 3rd choice... not that I am ready to give up on the other two quite yet.

They are now prescribing low dose antibiotic therapy for a number of conditions... Altzheimers, MS, acne, etc.. and people seem to do well on them... and improve... and have a decent quality of life.

Yes.. you might have problems with side effects.. but nothing I have seen compares to the HORRIBLE stuff he is going through... and MANY others do with what he is trying to take.

The drug I see that the most people have trouble taking is Flagyl.

The second is Rifampin.

The third is clindy/quinine/etc combo.

The fourth is zithromax.

The fifth is a combo of three drugs of any kind.

The next is Mepron.

It appears these are the drugs he was trying first at fairly high doses.... and with a long term infection.. or THREE or more infections, actually... this is a HARD row to hoe. In MY opinion.. with an already weakened system from the diseases and mercury, etc.. having him on these heavy drugs is going to slam him badly.

3. I also must mention.. I am NOT living with the idea I am going to be able to totally "cure" my tick borne diseases after 18 years of not being able to. It took the world out of me to come to that conclusion.. you'll never know.. but I had to look at the facts and decide if I was going to medicate myself to the point of having MORE major problems (including death).. or try to control the illness and do my best to have a decent quality of life.

The ups and downs were too hard to manage.. physically, mentally, emotionally, and even financially... so I am on a protocol that addresses the infections and keeps them under wraps as best as possible.. but in turn doesn't kill me in the process.

I don't know what to call it.. but it is kinda like addressing the symptoms as they appear with the drug of choice. Kinda like the ducks do.. but instead of using a mess of drugs to COVER UP symptoms.. I use antibiotics to address them.

Example.. bladder gets nasty.. maybe Cipro or Bactrim?? I find I don't need lots of it.. just a month or two and I am not having the problem.

General icky all over... doxy works well.

Babesiosis symptoms.. Mepron low dose works well.

I do not do all at the same time.. more of a month to 6 weeks or so here with one.. a month or two break or longer .. then as another problem pops up.. I address it with a month or two of whatever I have found worked best for that problem.


This has been critized by folks because some believe... by not getting in there and killing everything hard and fast.. and taking low doses now like I do.. I will let only the strong bacteria survive.

Anyhow.. I have never seen any written medical proof that this happens in a person with multiple tick borne infections.. however.. it could. I want you to know that IS a possibility though.

For me and many others... the bacteria still party on after many years... WITH the heavy doses- on and off.. and without them. Soooooooo.. unless a magic fairy wanders by with nothing to do and grants me three wishes.. I am stuck.. plain and simple.

As time goes by.. I see more and more folks in that same position.. chronic Lyme. Dr. B has a catagory for people like us... and these are his words.

"Unfortunately, not all patients with chronic Lyme disease will fully recover and treatment may not eradicate the active Borrelia infection. Such individuals may have to be maintained on open-ended, ongoing antibiotic therapy, for they repeatedly relapse after antibiotics are stopped.
Maintenance antibiotic therapy is thus mandatory."

I am not positive your hussband falls in that category.. but I do know the road he is on isn't making him happy or getting him well.

I HOPE Dr. B will address this special group of folks in the next set of guidelines coming out. But as we are all learning.. it takes time to research, write it up, and share it. I have the advantage of not having to follow the rules when I blurt out my opinions. LLMD's have to be very careful before they share any info.

4. Most of the symptoms I see on your list point 1st to Babesiosis. It also seems by reviewing your list that his best improvement came within the first 2 months of treating Babesiosis.

I am concerned that he is so unstable now though.

Let me go re-read something you wrote... back shortly. Also going to grab a quick bite for breakfast and take my meds.

Posts: 20300 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
Honored Contributor (10K+ posts)
Member # 5829

Icon 10 posted      Profile for Tincup         Edit/Delete Post   Reply With Quote 
Sorry.. have to go to doctors.. appt. time changed suddenly.... just found out.

Back later..

Posts: 20300 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
Frequent Contributor (1K+ posts)
Member # 5831

Icon 1 posted      Profile for oxygenbabe     Send New Private Message       Edit/Delete Post   Reply With Quote 
How about buying a portable home hyperbaric oxygen chamber? And finding a doctor to give him IV glutathione drips daily; and/or the Kane protocol.

Also, a low glutatamate diet. IV magnesium and anything else that will quiet down upregulated NMDA receptors.

I think these will help him alot. Email me if you want more info.

Posts: 2276 | From united states | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
Honored Contributor (10K+ posts)
Member # 5829

Icon 10 posted      Profile for Tincup         Edit/Delete Post   Reply With Quote 
Sorry for delay... just found out this afternoon I have to leave town in the morning... and we had a viewing to deal with tonight.

And.. my reading glasses.. the ONLY ones I have.. broke this evening and can't be fixed... they need to be replaced with new ones. I have them balanced on my face so I can see the board to type.

So.. short and sweet... and trust me.. I have fretted over what to do here all yesterday and today. It's more thinking than I have done in a long time... and I want so much to help.

Basically I would think starting back at square one would be what I would do in this case.. knowing what I know now.

Pick the meds that worked best.. pick the disease most prominent (Babesiosis is my guess).. and first take a break.. and then go ahead... and go SLOW!

As I drove to the doctors today.. I was thinking..

What if we found ourselves suddenly transported somehow.. against our will.. to the top of a mountain?

And what if.. to survive, we had to get to the valley below?

Our first instinct is to jump and hurry down there .. but that isn't the best way in many cases.

Slow and steady ... one foot after the other.. and resting as needed... would get us to our goal without causing MORE damage.

I don't think you will find any doctors better than the ones you have seen at this point. You can certainly continue to look... but too many cooks spoil the broth, don't ya know.

I would think stopping ALL non-essential meds and supplements long enough to clean up the body would be a good place to start.

Then.. and I STILL am concerned about YEAST here...

Then.. I would do ONE LOW DOSE medication for a short while to see if he stabilizes. The goal would be to level out the ups and downs and make him comfortable.

Doxycycline is my thought here because it will attack ALL infections. My thought is NO MORE than 200 mg a day.. and if that is too hard after the first week is over.. lower it until it isn't too much.

THEN.. after the body levels out.. start treating the Babesiosis... LOW dose.. VERY low. Chances are the herx-like reaction will be wicked.. fever, headaches, crummy feeling really bad. So go VERY low and slow so treatment won't have to be stopped.

The yeast MUST be addressed. Basic stuff only.. no fancy mixtures or supplements.

Milk thistle for the liver is good but if not taken regularly so far.. it will need to be started VERY slowly.

Decaf green tea... flavored to like-ability... is good.

Oxygen to assist the body might also be a help.. but FIRST things FIRST.

It is always nice to treat everything wrong.. but we need to deal with the infections directly first.. I would think.

If you add more than that.. it is impossible to say what is working.. what isn't.. and what is causing problems... and what you are wasting money on.

Yes.. you can keep trying this and that.. but it appears you have done that already to try your best.. bless your hearts.. but unfortunately, he is not much better.

When the body freaks out.. it is telling us NO. We need to listen and not try to force it to comply.

Some "bodies" just can't take the heavy load of anything... and I find MANY here can't. Plus we are using meds that were NEVER intended to be used as long or in such a dose as we use them.

It may take a month or two to settle things out... but after that.. a goal should be worked for at a slow pace so there is a quality of life while looking for more lasting improvement.

I wish I had a perfect answer for you both. But truth is.. I doubt anyone does. It isn't.. as you well know.. a "one size fits all" situation. Much of it is trial and error.

I think .. no doubt.. it is Lyme and coinfections... and who knows what else. Since we are not aware of all the coinfections that could be affecting any of us.. it is a "listen to your body" kind of disease at this point.

If you do something and it helps.. good. If not.. stop.

Half the fun of doing something should be the trip there.

Continuing to be miserable just to try and attain a goal is a waste of precious time.

I will check back when I return.. a week? Two? Not sure.

I hope this gives you some things to consider.. and most of all.. please know... we will continue to try to help in any way possible.

And we want you to feel better.. BOTH of you.. real soon.

PS. Dr. B in Colemar, PA has worked with a large number of folks with Parkinson's like symptoms.. and Lou Gehrigs patients. You may consider consulting with him as he is sort of taking on some hard cases and having success. Just a thought.


I am NOT a doctor.. and none of the above is medical advise. It is simply opinions and suggestions.

Now didn't that sound official?

If you get the choice to sit it out or dance...

Posts: 20300 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
Frequent Contributor (1K+ posts)
Member # 5831

Icon 1 posted      Profile for oxygenbabe     Send New Private Message       Edit/Delete Post   Reply With Quote 
Tincup you seem basically right but I would add that some people seem to get crazily upregulated glutamate pathways, very sensitive to glutamate. Rocephin downregulates that and is one reason apart from killing slyme that you can see improvement, and quick relapse upon withdrawing it. Glutamate is associated with seizures in autistic kids and is certainly asssociated with ALS so I am just assuming (perhaps incorrectly) its associated here. I was just watching a DVD of a conference about that so they use curcumin, theanine, pycnogenol, and I forget what else to downregulate glutamate in natural ways. Plus curcumin downregulates the inflammatory MMP's that lyme upregulates.

HBO therapy will suppress most of the bugs, reset system to parasympathetic, calm it down, help the whole body function since it is falling apart.

Glutathione/libostabil from Patricia Kane, I can't decide what I think but she does report extraodinary results in neuro disorders of all kinds including parkinsons and ALS. She is I assumed biased in her reporting but if even half of what she says is true its worth it to go to her or a doctor using this stuff.

Sometimes the body is just destroyed by the insults of bugs and toxins, cell membranes get totally screwed up, receptors and pathways in the brain also.

Gaba can get messed up...gaba drugs might help as we know klonipin is used in mycolonus from lyme.

I just think this person sounds like they're living in a body gone haywire so the above approaches can repair the massive damage, oxygen will help suppress the bugs, then decide what anti infectives to use.

I just spoke with a woman today who had RSD all over, so bad she couldn't stand, for 6 months, she threatened suicide to her doctor and parents. Then googled "RSD cures" and found out about hyperbaric and bought a home chamber. Went in 3 hours a day (!!!), 3 times a day in other words, for many months. Within six months could walk, drive, no problem. 18 months later she feels no pain, does her hbo 3-4 times a week. Hbo is a good biological response modifier in mysterious overall systemic-gone-crazy type symptoms.

Posts: 2276 | From united states | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
Frequent Contributor (5K+ posts)
Member # 6416

Icon 1 posted      Profile for seibertneurolyme     Send New Private Message       Edit/Delete Post   Reply With Quote 
Tincup and Oxygen Babe,

I went back and edited my already long message to include some of the adjunctive therapies we have tried (not just antibiotics).

Sometime soon I will post Steve's very long list of nutritional supplements to see what everyone thinks.


Hyperbaric is not an option for 2 reasons. 1st Steve tried it once in July 2001 when symptoms were very bad -- after 20 minutes they had to stop because the shaking got worse and he started having dry heaves. Being trapped in a very small space while constantly trying to throw up is an experience he definitely doesn't want to repeat.

This was 11 months before the Lyme diagnosis. The nurses told us that the only patients who got worse initially with hyperbaric before they got better were LYME patients.

Of course Steve had already been tested once for Lyme and had a negative Western Blot and Elisa so the neurologist did not pursue it and we didn't know enough to know to ask for a different test. At that time I was trying to find out everything I could about tremors and very few references can be found to lyme and tremors.

What a waste of 11 months !!!

We can't afford hyperbaric treatments even if Steve was willing to try again and we were told by Dr B in Long Island that it takes an awful lot of treatments -- I can't remember the number.

A lot of the other things you said require some more study on my part.

The part about the glutamate receptors is very interesting. I know that Steve can't take glutamine which the body turns into glutamate or glutamic acid when he has a leaky gut. I remember that one of these 2 was elevated on one of the amino acid tests Steve had sometime in the past.

Dr Kane is very opinionated but she does seem to know what she is talking about. The thing that really impressed us was that she had actually reviewed the couple hundred pages of Steve's medical records we sent prior to his appointment. Also she gave us her personal e-mail address and answers messages.

Klonipin did not help Steve's tremors -- this was before he developed myoclonus as well. He couldn't take the anger and irritability caused by this med -- much worse than with the IV Ativan which is also supposed to work on GABA. I can't understand why GABA supplements don't work but they don't.

I know that there are several Canadian Lyme patients who take turmeric (curcumin). Knew this helped with inflammation but had no idea there was a connection to glutamate.

Bea Seibert

[This message has been edited by seibertneurolyme (edited 19 June 2005).]

Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004  |  IP: Logged | Report this post to a Moderator
Frequent Contributor (1K+ posts)
Member # 2364

Icon 1 posted      Profile for lla2     Send New Private Message       Edit/Delete Post   Reply With Quote 
also babesia patients get much worse with extra oxygen like hyperbaric chambers, as babesia are aerobic, and feed on o2 in our red blood cells, so hyperbaric is bad for babs unless you know you don't have it, i'd stay away from that!

have yoiu thogyht of coinfections?

just rambling..


Posts: 4713 | From saunderstown, ri Usa | Registered: Apr 2002  |  IP: Logged | Report this post to a Moderator
LymeNet Contributor
Member # 3858

Icon 1 posted      Profile for orion   Author's Homepage     Send New Private Message       Edit/Delete Post   Reply With Quote 
I am SO sorry for you and your husband's trials in all this.

My daughter was very very ill with Lyme and Bart -- took 7 months for diagnosis, recognized by a Lyme patient, not one of the 20+ doctors we took her to.

We did 4 months of hyperbaric -- no immediate benefits but 2 months later she did better, enough to stagger to school for a few months, then she spiraled down again.

What put her back on her feet was ozone steam therapy -- your body is in a steam tent and you are steaming from the neck down in an O3 environment, not O2. I've got LD too and it also put me back on my feet. Both of us have been off abx for nearly a year.

She just finished 11th grade and it's the first year of high school that she was there the whole year. She's doing great.

It's cheap (about 5-600$), can't hurt you, and good for everybody (not just Lymies).

Yesterday I had lunch with a former researcher with the NIH -- one of the things that kept coming up in the conversation about this bug is that it HATES oxygen.

She says that the reason it does not travel in the blood very much is because the blood is too oxygenated!

They can't grow it in the labs like they do other bugs. They HAVE to grow it in an oxygen-DEPRIVED environment.

Knowing my and my daughter's story and what got us back on our feet, she says it makes scientific sense as she is very clear about how deadly oxygen is to borrelia.

I'm sure ozone steam therapy isn't going to work for everyone, but in my house it's worked for two out of two and cost less than two bottles of zithromax.



Posts: 245 | From Tickafornia | Registered: Apr 2003  |  IP: Logged | Report this post to a Moderator
Linda LD
Frequent Contributor (1K+ posts)
Member # 6663

Icon 1 posted      Profile for Linda LD     Send New Private Message       Edit/Delete Post   Reply With Quote 

Do you have a web site for one?


Posts: 1171 | From Knoxville, TN US | Registered: Dec 2004  |  IP: Logged | Report this post to a Moderator
Frequent Contributor (5K+ posts)
Member # 259

Icon 1 posted      Profile for GiGi         Edit/Delete Post   Reply With Quote 
Bea, I have your e-mail and will respond privately. Right now, to me it is shouting loud and clear - teeth. With ten gold crowns that you mentioned on another thread and a history of heavy metal toxicity - that's where I would look. Has your husband been treated for aluminum toxicity? Parkinson's symptoms - and alu needs to be treated differently than other heavy metals. His wisdom teeth sites checked? Root canals? Cavitations checked by an expert oral surgeon - not a biological dentist? Usually they are not able to see it. Was he tested with ART or a good form of kinesiology?

Mercury levels "normal" following a challenge urine test means little. There is no test that tells what is left in the body of any mercury and where it is. That can only be done with ART direct resonance testing.

Dr. C. is a very capable doctor, but heavy metals are not her expertise and she is not a medical doctor, though I respect her greatly for what she does in her specific area.

Take care.

Posts: 9834 | From Washington State | Registered: Oct 2000  |  IP: Logged | Report this post to a Moderator
Frequent Contributor (5K+ posts)
Member # 6416

Icon 1 posted      Profile for seibertneurolyme     Send New Private Message       Edit/Delete Post   Reply With Quote 

A couple of items need clarifying. My hubby had all his mercury amalgams replaced. He now has 10 porcelain crowns and 6 porcelain fillings. He has never had gold teeth although the dental work cost an arm and a leg!

Funny you should mention aluminum. This originally showed as elevated on a hair test and is what got us to looking into heavy metals to begin with. This never showed up as elevated on any additional tests. We tried the amino acid glycine supplements for a couple of months just in case but I don't think it helped any with symptoms as far as I remember.

He has not had a cavitat test although that has been suggested. He has no root canals and had his wisdom teeth taken out years ago. He had a different specialized dental x-ray but I forget what it was called. It was normal so we did not do the cavitat -- we didn't think we could afford it.

I think you meant Dr K instead of Dr C. Yes I know she is not a medical Dr, but she does have personal experience with mercury toxicity. Her son had a stroke at age 18 months I think and another one at age 18. Her theory is that she passed mercury to him in vitro and that caused his strokes. He has fully recovered I believe although I don't know what all treatments he had for mercury.

Will talk to you by phone if possible.

Bea Seibert

Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004  |  IP: Logged | Report this post to a Moderator
Frequent Contributor (5K+ posts)
Member # 259

Icon 1 posted      Profile for GiGi         Edit/Delete Post   Reply With Quote 
Bea, am answering just in generalities also for whoever else is interested:

Mercury fillings out years ago does not necessarily mean the mercury has left the body from the various compartments where it had settled. Over the lifetime of the fillings, mercury vaporizes out of the fillings into other body areas, the closest the brain. It can take years under the best guidance to help it out, depending.

My husband also had his wisdom teeth removed more than 40 years ago. The wisdom teeth sites were still filled 40 years later with infection, becoming an immense body burden, until they were surgically cleaned out. Only several months later did he start to improve and was able to walk again!

I posted an article here by Dr. C.H., the best oral surgeon for this kind of thing, wherein he refers to the "Teeth of Woe" - rather than wisdom teeth. It makes no difference whether they are still in the mouth or not -they often are a holding tank for toxins - usually the removal was done incompletely and the patient suffers for the rest of his/her life.

We also resisted and fought this for a couple of years before we did anything about it. We are not wealthy, but thrifty and live on social security and our savings from our working years - I worked 40 years full time, raised children, my husband over fifty years. It did not come easy.

Dr. B.K. is not known for her expertise in general heavy metal detox and related problems. She is excellent in her specific field and has done wonders in that. I have attended many conferences with both Dr. K's together. They complement each other well, but are very different in their approach. Dr. B.K. also does not do Autonomic Response Testing (ART) and that changes the practice totally and really is the key to all.

Aluminum - lab tests are not conclusive if the body is not letting it go! That happens for a variety of reasons and ruling it out if your husband still has such severe symptoms is probably not a good idea. Heavy metal lab tests and hair tests need to be interpreted in context with everything else.
Because a lab test does not bring forth any, again does not mean it is not still in the body.

This is what makes heavy metals and everything around them so tricky. Often as other problems are addressed, all of a sudden a nest of metals pops up somewhere. I have seen it happen so many times with myself and with my husband and everyone else that I have followed in the treatment. It is always a subject for discussion at any seminar or conference.

Notice working environment - has your husband been treated for all the nasty chemicals and formaldehyde?

Have you considered electromagnetic exposures at home and removed all that has an influence inside the house. Do you live near microwave towers? Geopathic stress?

There are so many aspects to consider to do it right and to become symptomfree!

Take care.

P.S. You may have been referring to a panoramic dental x-ray. Very few normal dentists can read the x-ray properly. That has been the experience all around me. It takes a good oral surgeon to read it and identify most problems, tooth by tooth. I don't think it costs as much as Cavitat. Pretty sure on that, because that's
how we got all the details to make a decision.

[This message has been edited by GiGi (edited 21 June 2005).]

Posts: 9834 | From Washington State | Registered: Oct 2000  |  IP: Logged | Report this post to a Moderator

Quick Reply

HTML is not enabled.
UBB Code is enabled.

Instant Graemlins

Post New Topic  New Poll  Post A Reply Close Topic   Feature Topic   Move Topic   Delete Topic next oldest topic   next newest topic
 - Printer-friendly view of this topic
Hop To:

Contact Us | LymeNet home page | Privacy Statement

© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to the Terms and Conditions.

Powered by UBB.classic™ 6.7.3

The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:

The Lyme Disease Network of New Jersey
907 Pebble Creek Court, Pennington, NJ 08534 USA

| Flash Discussion | Support Groups | On-Line Library
Legal Resources | Medical Abstracts | Newsletter | Books
Pictures | Site Search | Links | Help/Questions
About LymeNet | Contact Us

© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to Terms and Conditions.