posted
After nearly 3 years of oral abx that have seemingly had no effect (other than some bouts with yeast and fungus) I am going to try 3 months of IV Rocephin.
I am pretty worried about the yeast issue since I've felt its effects when I was on high doses of Ceftin.
To combat this my plan is to take 1 VSL #3 or a Theralac pill each day probably with some pearls, some Kefir, and some saccharomyces boulardi.
Does this seem to be about the best I can do in terms of pro-biotics? When I take the VSL I sometimes have a slight belly ache so I'm guessing no more than 1 of these per day. Do people recommend others? Quantities? I've heard that varying brands is a good way to use these.
My doctor wants me to do the daily IV along with Ursodiol, with Diflucan at the ready if the yeast gets to be a problem.
I don't live on a Lyme diet. I've tried and felt absolutely no effect and decided that I shouldn't have to be miserable every time I sit down to a meal. I will probably resume my low-sugar diet during the IV so that I don't feed the yeast what they want.
The Lyme symptoms that I experience daily are low-back arthritis (visible on MRI) and connective tissue in the knee pain. When I get active, the other parts of my body that do the work complain. Muscles tear and cramp and are sore for days. Other things like headaches come and go on no particular schedule or for no cause that I've been able to identify. Even my fatigue seems less now than a year or two ago (perhaps the orals did do something...)
My concern is that I'm really in a post-Lyme situation here where my immune system is in dysregulation (I've got the dreaded HLA DR4 haplotype) so the arthritis is something I've read that I'm going to have a harder time shaking even though others say "baloney".
So without a lot to observe in the way of "am I getting better" but the likely annoyance of yeast problems I wonder if anyone has some advice to give me that will allow me safely use this IV med without regrets that it made my situation worse.
posted
I think you are light on the probiotics. Your two brand choices are good but up the dosage.
I originally took (2) VSL#3 caps a day and before too long was up to 4 to 6 capsules a day to help keep BM's more solid.
Then I switch over to VSL#3 DS strength (its actually cheaper if your RX plan covers it) and changed a bargan brand Sacchromyses B. to Florastor
I've been on IV Rocephin for 13 months with good improvements.
I see from your closing line you were bit in 11/05 with symptoms in 6/08. I was similar with tick removed July 05 and developed EM Rash, did 30 days 200mg Doxy and was announced cured by my PCP.
Symptons were dormant (or slowly creeping) till March 2008 when the serious neuro pains and joint stiffness started.
Have you done any treatment for Babs? Maybe that's holding you back from any Lyme improvements.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- OLIVE LEAF EXTRACT before even starting abx (antibiotics) is best. Of course, even once on abx, OLE can be a fabulous help.
It totally prevented any problem with candida the last time I took abx for a 2 month stretch. And, considering my history with candida and abx, this was marvelous. I do think taking OLE for a few days before even starting the abx might have made the most difference.
You may need Diflucan Rx to get it tamed down and then maybe can rely on the OLE. Diflucan can be hard on the liver but it's a primo anti-candida Rx. Still, if OLE can work for you that is safest.
BERBERINE � LINKS SET -
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Keebler
Honored Contributor (25K+ posts)
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- When considering herbal / nutritional / adjunct methods:
if at all possible - because each person & each case is different - it's best to consult with an ILADS-educated LL (lyme literate) doctor who has completed four years of post-graduate medical education in the field of herbal and nutritional medicine -
- and someone who is current with ILADS' research & presentations, past and present.
Many LL NDs incorporate antibiotics (depending upon the licensing laws in their state). Some LLMDs and LL NDs have good working relationships.
When possible, it's great to have both a LLMD and LL ND and even better when they have a long-standing professional relationship.
Integrative / Holistic M.D., etc. (Be aware that those in this category can have various levels of formal herbal &/or nutritional education, perhaps even just a short course. Do ask first.)
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 from all corners of medicine;
knowing which supplements have direct impact, which are only support and which are both.
You can compare and contrast many approaches.
BASIC HERBAL EDUCATIONAL & SAFETY links,
BODY WORK links with safety tailored to lyme patients,
LOW HEAT INFRARED SAUNA detail,
BIONIC 880 (& PE-1) links, and
RIFE links. -
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Keebler
Honored Contributor (25K+ posts)
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posted
- You say:
"My concern is that I'm really in a post-Lyme situation here where my immune system is in dysregulation (I've got the dreaded HLA DR4 haplotype)
so the arthritis is something I've read that I'm going to have a harder time shaking even though others say "baloney". (end quote)
I say "baloney" - I have the same HLA DR4 and have that same concern but I do not belive in "post-lyme syndrome" as I think it's still untreated, undertreated, not YET properly or adequatedly treated (this can take years and many different methods and lots of patience) . . .
or other concerns that go along for the ride.
The recent ILADS conference had one LLMD or LL ND in a presentation address this very question, saying that it may be harder for the "dreaded HLA DR4 haplotype" but they felt it should not be called "the dreaded . . ." that they knew of some with it who did reach a good solid remission.
Now, about IMMUNE SUPPORT - that is important. Certain medical mushrooms (see a LL ND) and LDN - Low Dose Naltrexone Rx have been helpful for many.
It's important to never "boost" as a push but the right kind of support by someone who is very much LL. Lyme can "flip" certain functions of the immune system, so a LL doctor is required anytime immune enhancing support is employed. -
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Keebler
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posted
- To be sure as many bases as possible are covered:
Diagnosing Lyme Disease (&/or whatever else is going on)
Other tick-borne infections and other chronic stealth infections - as well as certain conditions that can hold us back - are discussed here. -
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Keebler
Honored Contributor (25K+ posts)
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posted
- To help the body better tolerate and respond to treatment:
posted
Thanks for your replies and links. I'll up the probiotics and get the OLE.
I am actually doing some treatment for Babs this week before the IV which will be installed next week. I'll be on Zithromax + mepron.
As far the "underground" nature of my LD. I got bitten by a tick in 2005 that I sent to a lab and it was found positive for Bb. The local drs I went to refused me antibiotics despite my plea (in retrospect I should have lied and said I had a rash that had gone away & some fever which is my advice for anyone bitten by a deer tick) but I decided to wait to see if I developed some symptoms and chill out. Over a year later I had migraine headache (first in my life). Then 6 months later started getting a migraine every 5 or 6 weeks. The same doc gave me Immitrex (not the kind of guy to check the record and think about possible causes). But it wasn't until 2008 that I woke up one day with both knees having stabbing pains when I bent down. From there on, its been more of these kinds of problems along with some classics like lymph gland swelling, and fatigue. So maybe that initial bite introduced pathogens that laid low for a long time (I've got a strong immune system and was in great health) or maybe I got another bite in 2008. Either way, no rash, no fever, no flu-like symptoms. Some days I wonder if I really have LD. Others I'm certain I have it. That's why this IV thing makes me nervous. The amount of drugs I've taken if I don't actually have this disease.... ( Of course, the other explanations have been pursued and proved false)
Anyway,
My interpretation of post-Lyme (with respect to my case) is that the spirochetes have been killed and that what I'm now dealing with is something that doesn't require abx. Immune system dysregulation with inflammation being generated like crazy even after the bugs are killed is the only thing I've read about that seems to match my experience. Did the LDN for a year. Just quit a few weeks ago and don't notice a change.
In 3 years of oral abx I might have had a Herx once? I eventually stopped them for 8 months and noticed no onset of problems as long as I didn't do a ton physical activity. More evidence that the 'chetes are dead? The heavy physical activity is what seems to bring on the problems with torn or damaged connective tissue, muscle aches, joint stiffness, that can go on for weeks before subsiding.
I'd love to know why they can't take a tissue sample from a knee and find some spirochetes in it.
Everything you thought you knew about cyst busters is wrong . . . Eva Sapi . . .
Doxycycline worked according to plan. Doxy inhibits protein synthesis - it kills bacteria, including Lyme, by action within the cytoplasm, inhibiting the manufacture of proteins required for the bacteria's survival.
Doxy and others are commonly referred to as intracellular antibiotics.
Spirochete loads decreased by about 90% while cyst levels increased by 200% - just as expected. . . .
. . . Amoxicillin killed 90% of spirochete forms - OK, but -- it also killed 68% of the cystic forms!
Amoxicillin and other cell wall drugs are not cyst busters - only specific anti-parasite drugs kill cysts - or so we thought.
Well let�s think again for a second: what are cysts? . . . .
- Full blog entry at link above.
--------------------------
Copyright law does prevents full access, however, you may find more about this somewhere else, just use "Advanced Google Search" for the title, etc.
Download PDF (315.4 KB) is $40.00
However, you can see a one-page Fulltext Preview here. Clink onto that preview page and then print. But you will need a powerful magnifying glass to read it.
Neither at the site nor in the print mode was I able to enlarge the type.
Journal of Neuroinflammation 2008, 5:40 doi:10.1186/1742-2094-5-40
Persisting atypical and cystic forms of Borrelia burgdorferi and local inflammation in Lyme neuroborreliosis
Judith Miklossy1*, Sandor Kasas2, Anne D Zurn3, Sherman McCall4, Sheng Yu1 and Patrick L McGeer1
� 2008 Miklossy et al; licensee BioMed Central Ltd. -
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Keebler
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Member # 12673
posted
- Bottom line: hopefully you have one of the very best LL doctors who is way ahead of the curve with his or her education in this area of chronic stealth infections - and how that relates to YOUR body. -
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Keebler
Honored Contributor (25K+ posts)
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posted
- I understand your concerns regarding Rx. You might also want to consider Rife.
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