posted
Hi All, I have had lyme prob since 2004...misdiagnosed as fibro until 2009 or 10...and have been treating since then (also mcs now). I am really panicking bc I need to get back to work or school or something...Im sure you all understand. I stopped working about 1.5 yrs ago bc the stress or toxic people and toxic chemical exposures were making me so much worse and my employer did not follow the law with real accommodations.
Anyway, there were a few periods where i was doing decent around 80% and over the past year and more recently have been worse at about %60ish. I have been off antibiotics for a year+ (was on for about 2.5 years) due to bowel intolerance and was doing well for a while. I went back to my dr and he wants to suddenly put me back on them now... I just dont know if that is the right decision or if I should try a different dr or approach at this point... Should I try to go a more natural route? I am panicking bc I feel like my treatment has been stalled for the past year and im suddenly doing worse.
Recently I have been seeing a TCM dr and on a restrictive diet (caffeine, dairy, sugar, gluten, nightshade free). I thought I was doing ok...but some bad pain has slowly been returning....
I feel like I am just off track and looking for some realistic options to finish off my treatment... Any suggestions... can anyone commiserate? I am just in a bad place about this... not to mention I think all my friends and family are just sick and tired of my illness and treat me like some type of leper... anyone understand?
Posts: 109 | From North East | Registered: Mar 2011
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posted
High Lassie27. I am new to this myself, although I may have harboured things for decades. My symptoms come and go - mainly rashes and broken back syndrome with no injury or medical reason. no rheumatology tests are positive, except scleroderma. no history of rheumatology from either parents.
I think that trying to use antibiotics alone will cause more issues - both from the pathogens and the strain they cause on our normal flora which support all of our daily life systems.
I think it is very important to try to maintain a healthy balance with many supplements. These supplements should also include biolfilm disrupters, detoxers, and anti-pathogens. While you take antibiotics, these supplements help to keep the other bad things down.
read the pages at that web site, and look at the supplements they have categorized in links down the left of the page.
-------------------- * Posts: 74 | From Bowie, Maryland | Registered: Aug 2014
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- It does not sound like your TCM doctor is an ILADS educated LL ND (or similar). If not, I would change. Even the best ND (or similar) just cannot have the expertise required for someone with lyme.
And, even if they say they know all about lyme, they may think they do - but are fooling themselves. I've been there. So, I figure out this after repeated failures:
- When considering herbal / nutritional / adjunct methods, because lyme is so very complex & unique, as are possible coinfections:
if at all possible - because each person & each case is different - it's best to consult with an ILADS-educated LL ND (lyme literate naturopathic doctor) (or similar) 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, and has completed the ILADS Physician Training Program (see: www.ilads.org )
so they really know all they can about the science of lyme . . . how lyme (& other TBD) act and what we can do about that in various ways.
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.
Herbal Safety considerations & reference books; etc.
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 with links to articles, books, methods . . .
BODY WORK methods / links (and why anyone who works on your spine MUST be LL to the degree they at least know to never suddenly twist neck or spine. Never. Ever. And that we should never be advised to do neck / head / shoulder stands.) -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- Now, that is not to say if you should do a more "natural route" as you ask. I've never had access to a LLMD and the LL NDs came very late to my area -- I'm not sure one can say it's this way or that but what works. A blend, usually is best.
But if this is not treated ASSERTIVELY you could be dancing around for much longer. Antibiotics can be balanced to be better tolerated. But, for tolerance issues, you might really want to explore RIFE as you weigh options.
TF who posts here says that once she found an excellent LLMD who treated ASSERTIVELY (who does include support methods), she found good solid lasting remission in about a year -- after spending several years with other, otherwise seemingly adequate LLMDs -- but they just were not as on target as she needed.
But tolerance issues are to be considered as to what is best for your body. Often the right kind of liver / kidney support or other supplements can help solve that issue.
RIFE is also a good consideration. See the RIFE thread in the links set above.
Bottom line, if what you have been doing is not working, reassessment / change seems most logical.
Sadly, though, (and cruel considering the practicalities) . . . do NOT rush things on your timeline. This will take as long as it takes. And it can take years, even if we've already clocked in years.
That dictate to our body to be this way or that way by this or that time can really set us up for self hate. Sure did for me.
I just hope you can find the best DIRECT approach and guidance available to you, as well as ways to make this all work out.
With MCS, be sure to be assessed for methylation / MTHFR (Google those terms with "Amy Lasko") -
[ 09-02-2014, 02:23 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
There have been many positive results using Rife frequency treatments. My wife is not cured, as she still has a small amount of Lyme left, but coinfections appear to be gone.
The Rife thread here is not very active but feel free to use it if you decide to go that route.
It is one of the few long term treatment options you can use yourself, without the side effects of other treatments.
When antibiotics don't get you where you need to be, it is a good backup plan.
Dan
Posts: 2919 | From Minnesota | Registered: Aug 2006
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Ellen101
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posted
Can you explain your symptoms a bit more? Pain where? I know for me cutting out all gluten, soy, dairy, grains as well as starch made a huge difference.
Posts: 1748 | From United States | Registered: Dec 2011
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posted
As a long-term Lyme patient, I am convinced that there are times when aggressive antibiotic treatment is necessary. This disease is bacteria based and if you have other co-infections, you may need to amp up the anti'bs until you feel better. When youlearn more about how spyrochete bacteria live and thrive in the body, that makes sense. If I were in your shoes--and I've been where you are many times--I would get back on an antibiotic that you can tolerate, perhaps IV or IM injections. Discuss with your doctor. In addition to this, gut health is imperative and I use different probiotics and diet/nutrition to support my immune system, as well as my colon--especially if you are taking antibiotics long term. I firmly believe that an integrative approach to treating this disease, especially in the 'late stage' or chronic form that you have, takes 100% discipline to a whole-body life style; nutrition, supplements, anti'bs, exercise, rest, etc. You know all that, I'm sure. You might also check out this website: lowdosenaltrexone.org. Many LLMDs recommend this therapy to their patients. I has helped me feel a lot better. More importantly, it is giving tremendous immune system support to my body--and REALLY important--to my brain. Ultimately, untreated Lyme disease becomes a neurological disease and you don't want that. Best of luck to you, and a hug.
Posts: 11 | From Washington | Registered: Aug 2014
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- CanyonLady,
Many here can't read large blocks of solid type. It's best to have paragraphs of 3-4 lines or less so that more may read and reply.
That's about 5-6 lines in the edit mode but you can go back after posting to adjust it.
You'd go into the edit mode, click onto the tiny paper & pencil over the post and just add in white space (breathing room for the eyes).
As well, a new paragraph for each thought or question is helpful not just for our cognitive "breathing room" and keeping it all straight -- but so each point gets its due or answer. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- Posted by CanyonLady:
As a long-term Lyme patient, I am convinced that there are times when aggressive antibiotic treatment is necessary.
This disease is bacteria based and if you have other co-infections, you may need to amp up the anti'bs until you feel better.
When you learn more about how spirochete bacteria live and thrive in the body, that makes sense. If I were in your shoes--and I've been where you are many times--I would get back on an antibiotic that you can tolerate, perhaps IV or IM injections. Discuss with your doctor.
In addition to this, gut health is imperative and I use different probiotics and diet/nutrition to support my immune system, as well as my colon--especially if you are taking antibiotics long term.
I firmly believe that an integrative approach to treating this disease, especially in the 'late stage' or chronic form that you have, takes 100% discipline to a whole-body life style; nutrition, supplements, anti'bs, exercise, rest, etc. You know all that, I'm sure.
You might also check out this website: lowdosenaltrexone.org.
Many LLMDs recommend this therapy to their patients. I has helped me feel a lot better. More importantly, it is giving tremendous immune system support to my body--and REALLY important--to my brain. Ultimately, untreated Lyme disease becomes a neurological disease and you don't want that.
Best of luck to you, and a hug.
[end post by CanyonLady in Washington]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Judie
Frequent Contributor (1K+ posts)
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posted
TCM did not work for me. I needed to go back to antibiotics. I seriously backslid doing TCM and wouldn't be in the mess I'm in if I had done antibiotics. You don't have to do orals.
You can do things like IM bicillin (intermuscular penicillin) or IM rocephin. That will bypass the stomach. Some doctors do IV, which also bypasses the stomach and gets the medication directly into you.
It's worth looking at other options.
Posts: 2839 | From California | Registered: Jul 2012
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Keebler
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posted
- Never as a substitute for direct treatment of lyme / TBD (whatever path that might take whether, abx, &/or herbals, &/ rife / biophoton, etc.),
If you explore LDN, low dose naltrexone, as an adjunct support it's best to read the various threads here of those who use / or have tried this.
Some do very well. And it is most certainly worth looking into. Some do not, though. Some really do not (sadly, I was in that set).
It's hard to know why there is such a vast difference in outcomes (even with all being educated about it and the careful incremental starting steps)
but it seems clear that if there are adverse effects early on, it's best to just stop. I've not read of it getting better for anyone who had a terrible start. Some hints may be in the discussion thread, although, individual differences still vary widely.
Still, if it's just a little rough, that would be worth holding on for it to work out. It's good to know how to prepare, etc. Starting very low and slow with exact measurements.
In the "search" mode, check both in medical and general forms, in the SUBJECT line for both terms:
quote: Can you explain your symptoms a bit more? Pain where? I know for me cutting out all gluten, soy, dairy, grains as well as starch made a huge difference.
- That was my question. I think you WERE on the right track with your diet changes and avoiding antibiotics.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Hi Lassie27...
If you are looking for a treatment that is both anti-microbial and also is supportive, healing and restorative to the body, I'd like to suggest that you read this thread about mild hyperbaric:
Toward the end of the thread you can read accounts of other people's progress...
Posts: 1880 | From Earth | Registered: Jul 2013
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glm1111
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Member # 16556
posted
Parasites are an often overlooked co-infection of Lyme disease even by LLMDs. Google parasite symptoms and check out the PARASITE WARRIORS SUPPORT THREAD.
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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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Dan mentions the rife thread. Detail in this set:
Both Hyperbaric Oxygen & Parasite considerations are also mentioned in discuss above. In addition to the HBO link posted above. . . Inside of the set above, see the "How to Find a LL ND" and see detail about both of those are in that thread.
As for dietary influences, more detail below, especially see: HIDDEN SOURCES OF GLUTEN
Gluten; Dairy; GMO detail, too. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Kudzuslipper
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Member # 31915
posted
Hi Lassie, I had similar situation as you... treated for 2 years, got to about 80/85% --my gut gave out. got progessively worse over a year (my symptoms are mostly fibromyalgia type pain) but refused to get back on abx...I finally did... I was on for about 3 months... I responded much quicker, fewer, less intense herxes.
In my head, it has helped me to accept that, treatment may be ongoing... I may have to do a few months of abx here and there... there are worse things.
I believe there are people who do get 100% better... and we should never stop looking for the cure... but you can lose a lot of life searching for answers and going from dr. to dr.
was it an llmd who treated you for 2.5 years? is that when you were feeling better? I would listen. you can always go off if your gut acts up again.
I am now feeling about 89% better. I feel it is a juggling act of abx, diet, refueling what's missing from fighting so long (like vit d3 and magnesium and omega 3's) and also, some sort of recognition that 80/90% may be as good as it gets-- and figure out how to live your life as best you can from there. sometimes accepting, allows us to move ahead.
Posts: 1728 | From USA | Registered: May 2011
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Haley
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posted
Seems like a fairly common scenario, unfortunately. I always ended up back on antibiotics, but I do think I needed less as time went on.
I started mHBOT as of yesterday. I truly believe that this may turn things around, but it is too soon to say. Phoiph posted the link if you are interested.
The oxygen works like a medicine. I mean, you do need a prescription for it, so it is different than just taking another herb. It's fairly potent, but there are no side effects and no toxic feeling.
Posts: 2232 | From USA | Registered: Aug 2009
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Ellen101
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posted
quote:Originally posted by Kudzuslipper: I believe there are people who do get 100% better... and we should never stop looking for the cure... but you can lose a lot of life searching for answers and going from dr. to dr.
I am now feeling about 89% better. I feel it is a juggling act of abx, diet, refueling what's missing from fighting so long (like vit d3 and magnesium and omega 3's) and also, some sort of recognition that 80/90% may be as good as it gets-- and figure out how to live your life as best you can from there. sometimes accepting, allows us to move ahead.
Very well said Kudzuslipper! It's also important to remember that there are many without lyme that do not feel 100%. Age, fluctuating or declining hormones, stress etc can make anyone feel poorly. At some point it is important to look beyond lyme. I can't help but wonder if the symptom list in Horowitz's book while doing alot of good, may have done some harm..I don't think there is one symptom not listed. That list would have everyone thinking they have lyme.
Posts: 1748 | From United States | Registered: Dec 2011
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surprise
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Member # 34987
posted
I find the exact opposite about Dr. H's book, he lists many other things (thyroid, gut, hormones, etc.) to look at and test! Quite the opposite of 'it's all lyme'
Yes Kudz, excellent post. The crux of acceptance/ vs. fight for better health.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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