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Author Topic: POLL - Helping each other - Thank you!
steve1906
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***
***
***I was asked to add/delete some lines, so the line numbers are different.

THIS POLL IS FOR HELPING EACH OTHER

COPY & PASTE THIS DATA

Fell free to add comments at the end of this poll – thanks for taking the time!

Lyme/co-infections

1- How did you find out you had Lyme?

2- How many medical professionals did you see to before getting diagnosed with Lyme/tick-borne disease?

3- How long did it take you to get diagnosed?

4- Are you only treating Lyme, or are you also treating co-infections, and if so, which ones? If you know.

5- Are you still sick?

6- Are you better or worse since you got sick – Give %?

7- How many years ago did your symptoms start?

8- Did you/do you treat with
antibiotics/alternatives/herbals?
Please describe what's been helpful/not helpful.

9- Do you have an LLMD/Other?

10- What would you do different if you knew what you know today?

11- List of best sources for price-competitive supplements/immune support products?

12- Most helpful websites & Books

***Comments Please: List any comments you think will help others.

[ 09-13-2014, 11:05 AM: Message edited by: steve1906 ]

--------------------
Everything I say is just my opinion!

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steve1906
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How did you find out you had Lyme?
Research – All doctors said no till I tested positive – local Lab

How many medical professionals did you see to before getting diagnosed with Lyme/tick-borne disease?
23-26 - Doctors

How long did it take you to get diagnosed?
3 - years – Tested positive Lyme/only at a LOCAL LAB.

Are you still sick?
Yes

Are you better or worse since you got sick – Give %?
Yes – about 75% better – some days/weeks are much worse than others

How many years ago did your symptoms start?
Devastating symptoms started about (9) years ago 2006

Did you treat with antibiotics/alternatives/herbals?
Yes antibiotics – And tried many different alternatives/herbals

Do you have an LLMD/Other?
Had one LLMD for about (3) years – And one Alternative medicine Doc
Protocols?
(3) Three years on and off antibiotics – antibiotics stopped working after about (7/8) months – tried many different alternatives/herbals and still doing so - integrative medicine doctor (Treating the Whole Person) – Acupuncture

What would you do different if you knew what you know today?
Start treating with antibiotics right away – the sooner the better. Most LLMD’s have a long waiting list - I would start treatment before my appointment.

Comments – And any Alternatives that may have helped you
For me - (Exercise and Diet) are a must. When I stop either one of these, I go to a very dark place.

Heating my body helps with symptoms – I use a Steam-Room. The more active I am, the better I feel.

Steve

--------------------
Everything I say is just my opinion!

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Robin123
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1) A nurse online told me, and then I tested positive.

2) Probably 100, counting doctors, and chiropractors, all kinds of body workers many times over.

3) 25 years

4) Dealing with only Lyme

5) still ill

6) Better - 50%

7) 33 years ago

8) yes antibiotics, many alternatives, not herbs (allergic to many). Initially treated with oral clindamycin around the clock; stopped all fibro pain in a week's time. Lasted 5 years, although clindamycin seems to treat other infections still. Now treating with turmeric. Also other anti-inflams like mangosteen juice, noni juice, grapeseed extract. Also Vit D drops to boost Vit D count. Armour thyroid made me feel present again.

9) yes, LLMD

10) I don't think I would have done anything different once I found out about Lyme - the treatment just went as it did.

But if I go back to the beginning, then to know a tick bite means something, and that "throwing" remedies at our fibromyalgia bodies and then stopping to go onto the next experiment - I wouldn't have stopped any remedy had I known we were treating an infection.

12) Lyme_aid_buhner is a good discussion site - I'm not doing the herbs, but the discussions are good for those not able to take antibiotics.

Comments: sometimes people not in the Lyme community have told me what to do. Like the dercum's community knew what to do about lipomas (drink noni juice and take grapeseed extract) and my chiropractor told me about drinking mangosteen juice for my eyes.

[ 09-13-2014, 08:10 PM: Message edited by: Robin123 ]

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hiker53
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1- How did you find out you had Lyme?

A friend suggested I might have it as I had similar symptoms to someone she knew

2- How many medical professionals did you see to before getting diagnosed with Lyme/tick-borne disease?

over 20 my gynecologist is the one who had me tested

3- How long did it take you to get diagnosed?

19 months

4- Are you still sick?

yes, but I think it is parasitic worms

5- Are you better or worse since you got sick – Give %?

better--80%-85%

6- How many years ago did your symptoms start?

11, but a MD thinks I had the Lyme longer, but it did not manifest symptoms.

7- Did you treat with antibiotics/alternatives/herbals?

1 year antibiotics, some herbals, mainly alternative

8- Do you have an LLMD/Other?

I did have LLMD for several years, but gave up as I saw no improvement with them. Antibiotic really trashed my body--lost 30 pounds etc.

9- Protocols?

a) antibiotics--oral and I.V.
b) salt/C
c) herbs
d) rife
e) photon therapy
f) energy healing

10- What would you do different if you knew what you know today?

I would treat for parasites sooner and use energy healing sooner

11- List of best sources for price-competitive supplements/immune support products?

quite a wide variety--depends on the product

12- Most helpful websites & Books--I learned a lot here at lymenet

13- Alternatives that may have helped you?

definitely photon therapy and energy healing

***Comments Please: Never get a flu shot. I had recovered from my initial symptoms after 6 months not even knowing I had Lyme.

Got my first and only flu shot which immediately brought back the initial symptoms and some worse ones.

Alternative therapies of photons and energy healing have worked wonders for me.

Keep exercising if you can.

My faith in God has saved my life and given me hope.

Hiker53

--------------------
Hiker53

"God is light. In Him there is no
darkness." 1John 1:5

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Razzle
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1- How did you find out you had Lyme?

A Naturopath I was consulting about immune deficiency had a hunch and did an IGeneX test on me, which came back IGX positive but not CDC positive.

After some online research, I finally realized this was the first diagnosis that actually fit with my symptoms and health history.

2- How many medical professionals did you see to before getting diagnosed with Lyme/tick-borne disease?

More than 100 doctors, naturopathic practitioners, etc.

3- How long did it take you to get diagnosed?

Over 30 years.

4- Are you only treating Lyme, or are you also treating co-infections, and if so, which ones? If you know.

Lyme, Bartonella (clinical dx only; tests negative), and we don't know which other coinfections (Fry Labs negative for everything they can test for except Lyme; IGeneX negative for Anaplasma & Ehrlichia).

I have labwork consistent with Anaplasma (low WBC & RBC, w/ intermittent Pancytopenia), and have been experiencing symptoms more recently that may indicate Babesia, but could just be the Bartonella + Lyme.

I test negative for EBV & CMV. I think I remember a positive HHV6, but not sure.


5- Are you still sick?

Yes.

6- Are you better or worse since you got sick – Give %?

1000% worse. Symptoms started gradually and I have progressively gotten sicker and sicker.

7- How many years ago did your symptoms start?

Approx. 37 years.

8- Did you treat with antibiotics/alternatives/herbals?

All of the above.

9- Do you have an LLMD/Other?

I currently see a LLND.

10- Protocols?

Tried Buhner, failed (severe herx/allergic reaction to Japanese Knotweed; took about 3 1/2 years to mostly recover from it, but never have been back to being as well as I was before starting the knotweed).

Tried various antibiotics, but no lasting help.

Am trying now a Ray Tube machine, homeopathy, essential oils, and will be (carefully) adding some herbs soon.

11- What would you do different if you knew what you know today?

I would have gotten diagnosed a LOT sooner, used homeopathy and herbs to get/stay well (when I was still healthy enough to handle aggressive treatment), and probably would be healthy and working today.

12- List of best sources for price-competitive supplements/immune support products?

Local practitioners & Vitacost.com

13- Most helpful websites & Books

Websites:
http://LymeNet.org - esp. the Flash Forums
http://ilads.org
http://BetterHealthGuy.com
http://LymeDisease.org
http://thehumansideoflyme.net/viewarticle.php?aid=62 (Bell's Palsy of the Gut)

Books:
Cure Unknown - Pamela Weintraub
Healing Lyme - S. H. Buhner
The Homeopathic Treatment of Lyme Disease - Peter Alex

14- Alternatives that may have helped you?

Methylation stuff - if I didn't know about that, I'd probably be dead (my reactions to sulfites have become anaphylactoid; without knowing about methylation, I would not know how to counter a reaction effectively without damaging my immune system further).

Homeopathy - if I hadn't been blessed with an outstanding Homeopathic physician when I was a teen, I probably would have died. I also use homeopathy to help manage some Lyme symptoms, and am working with a practitioner who uses sublingual homeopathic preparations to help the body's immune system cope with the chronic infections (Lyme, etc.) & toxins from the infections (such as ammonia).

Essential Oils - I use some essential oils to help with many things. Mostly, with combating allergens and mold in my environment, helping to support my immune system, and now also helping to control neurological symptoms of Lyme/co's (seizure-like episodes, motion sickness, etc.).

Herbs - there are some herbs that I use to make life more comfortable, such as Fenugreek, Nettles, Andrographis, Elderberry, Yucca Root, etc.

Ray Tube Machine - wonderful for detoxing, and also have herxed much more significantly than from medications when running programs for Lyme and h. pylori.

Magnets - Magnetic mattress 'cured' me of bedwetting and helped me have the energy and stamina to graduate from college and get a decent job (before RSD/Bart.+Lyme got to be too much).

Vitamin B12 - Diagnosed with severe deficiency (pernicious anemia) after I'd been on a nearly 100% vegan diet for ~10 years; discovered since that I cannot absorb B12 orally/sublingually. The methyl-B12 shots make a huge difference for me because of methylation issues.

My Faith keeps me going, along with support from this group and my family.

Comments:

Interesting survey [Smile]

[ 09-14-2014, 08:45 AM: Message edited by: Razzle ]

--------------------
-Razzle
Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs.

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rowingmom
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1- How did you find out you had Lyme?

I figured out our 10 year old daughter was suffering from PANS/PANDAS, likely caused by lyme by researching on the internet. The ACN PAN/PANDAS/Lyme forum specifically.

2- How many medical professionals did you see to before getting diagnosed with Lyme/tick-borne disease?

We saw 4. Our PCP said that our daughter's symptoms were caused by her not wanting to attend school. He Rx'd Ritalin for her ADHD and Klonopin for her Tourette's and told me she needed a good spanking. He did nothing but run a basic blood profile. Later when I showed him our Igenex WB results for IND lyme-specific bands and positive bartonella, he refused to believe that the tests were credible. He refused treatment.

Our pediatrician at least tested for autoimmune responses. ANA was positive, but all other tests were negative. She was stymied.

Our pediatric psychologist dx'ed Asperger's, Tourette's, Sensory Processing Disorder and ADHD. She suggested that PANDAS might be the culprit (as symptoms would flare with strep infections), but assured me that IVIG, the only known treatment for it, was unavailable to us in Ontario, Canada.

I then found the LLMD that was to take us through abx treatment for bartonella which resolved all symptoms by approximately 80%.

3- How long did it take you to get diagnosed?

Because our daughter was born with symptoms, it took us approx. 10 years to figure out why she had responded negatively to vaccinations and was diagnosed with the above illnesses.

4- Are you still sick?

At this time our daughter is asymptomatic, but we continue with low dose herbal (bartonella/babesia) treatment.

5- Are you better or worse since you got sick – Give %?

99% better

6- How many years ago did your symptoms start?

Our daughter's neurological symptoms started at birth, but it wasn't until she was 10 that her physical pain symptoms began.

7- Did you treat with antibiotics/alternatives/herbals?

She was treated for 2 years by our wonderful LLMD with multiple combination antibiotics for bartonella. After weaning abx I continued on my own with Buhner's bartonella protocol because I was not satisfied that the infection was resolved. After 8 months of Buhner's full herbal bartonella treatment I added some herbs from the babesia protocol. This has brought our daughter to remission.

8- Do you have an LLMD/Other?

I continue herbal treatment with full consultation of Julie McIntyre, Stephen Buhner's associate. We have not been back to our LLMD since Nov 2013.

9- Protocols?

Stephen Buhner's full bartonella and babesia protocols (minus l-arginine because I can't rule out viral involvement).

10- What would you do different if you knew what you know today?

If I knew then what I know today, I would have chosen to treat with Buhner's protocols in the beginning. I was not sure of myself and needed the assurance of our LLMD to teach me that mainstream medicine is not the "be all end all" that it claims to be.

11- List of best sources for price-competitive supplements/immune support products?

Swanson: Activated B Complex for MTHFR deletions,

1stChineseHerbs: Japanese knotweed and houttuynia powdered herbs, cordyceps powder

WoodLandEssence: Sida acuta, Japanese knotweed, bidens, red root, CSA tinctures

OrangeNaturals: organic turmeric, hawthorne, ginger, milk thistle tinctures

Nature's Way: GreenBlack Walnut Hulls, Astragalus

ColdFX: American ginseng extract

Ascentia NutraSea Cod Liver Oil

Culturelle, Align, ReNewLife, AOR Probiotic3, PrescriptAssist Soil Based Probiotics, Mutaflor

12- Most helpful websites & Books

Lymenet.org, HealingWell Lyme Forum, ACN PANS/PANDAS/Lyme forum, BetterHealthGuy.com, lyme-morgellons.com, HealthyHomeEconomist, PerfectHealthDiet, MarksDailyApple, Mercola, GreenMedInfo

Stephen Buhner's books:

Herbal Antivirals: Natural Remedies for Emerging & Resistant Viral Infections

Herbal Antibiotics, 2nd Edition: Natural Alternatives for Treating Drug-resistant Bacteria

Healing Lyme Disease Coinfections: Complementary and Holistic Treatments for Bartonella and Mycoplasma

And looking forward to:
Natural Treatments for Lyme Coinfections: Anaplasma, Babesia, and Ehrlichia

Dr. David Jernigan's "Beating Lyme Disease, 2nd Edition". It seems a little out there, but properly treating lyme and coinfections requires a paradigm shift. His detox protocols are very good.

13- Alternatives that may have helped you?

Cilantro (2 drops 3x daily) and diatomaceous earth helped us to recover from EMF sensitivity.

Comments: I have taken out vaccine exemptions for both of our children.

Our gut microbiome is being destroyed by glyphosate, making adjuvants and metals in vaccines all the more toxic. Because a good percentage of our immune system is housed in the gut, glyphosate is also destroying our immune systems.

http://articles.mercola.com/sites/articles/archive/2014/05/08/heavy-metals-glyphosate-health-effects.aspx

http://nhrighttoknowgmo.org/BreakingNews/Glyphosate_II_Samsel-Seneff.pdf

http://www.mdpi.com/1099-4300/15/4/1416

http://www.greenmedinfo.com/blog/vaccine-injury-biological-plausibility-microbial-predisposition

[ 09-13-2014, 11:54 AM: Message edited by: rowingmom ]

--------------------
13 yo DX PANS/Tourette's/Asperger's/ADHD treated for Igenex positive bartonella/IND lyme with 2 years of abx treatment. Weaned off abx April 2013 at 80% improvement. Continuing with Buhner bartonella/babesia protocols. Aug 2014 99% improvement.

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GretaM
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1- How did you find out you had Lyme?

After seeing a neurologist for partial paralysis, crippling head pain, speech slurring and coordination issues (dx was migraine), my mom strongly suggested seeing a local ND. We went over my health history, and did some more neuro tests, and he suggested trying abx to see if some symptoms would abate.

2- How many medical professionals did you see to before getting diagnosed with Lyme/tick-borne disease?

32 medical doctors, 16 specialist and numerous alternative practitioners.

3- How long did it take you to get diagnosed?

If I include the first EM rash, it took 12 years.
If I include full neuro symptoms to the time I saw my LL, 4 months.

4- Are you only treating Lyme, or are you also treating co-infections, and if so, which ones? If you know.

Lyme, bartonella, babesia, mycoplasma, anaplasma, EBV, CMV, HHV6, RMSF, blood protozoa, intestinal parasites, systemic fungal infection

5- Are you still sick?

Yes, but getting better every day

6- Are you better or worse since you got sick – Give %?

I am 50-65 percent better

7- How many years ago did your symptoms start?

11

8- Did you/do you treat with
antibiotics/alternatives/herbals?
Please describe what's been helpful/not helpful.

Helpful- IV Rocephin, Tinidazole, Spronox, Alinia, Doxycycline, Minocycline, Rifampin, CSA Tincture, Diamox, chlorella, activated charcoal, diecetomous earth, high dose probiotics (400 billion cfu plus daily)

Not helpful-Biaxin, Mepron, Zithromax, Byron White herbals, methylation defect supplements, stephania, teasel root,


9- Do you have an LLMD/Other?

Yes, the best doc in Canada

10- What would you do different if you knew what you know today?

I would have not spent the money on the Byron Whites. There's approx. $600 of them sitting on my counter and they just don't work.

11- List of best sources for price-competitive supplements/immune support products?

Can't say, but one can PM me for more info.

12- Most helpful websites & Books

Lymenet, Buhner's books because they describe the nature of the bacteria.

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D Bergy
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Lyme/co-infections

1- How did you find out you had Lyme?

Wife has Lyme. Never tested positive but I knew what Lyme Disease was. Bit by Deer Tick. Brought tick in to doctor. Doctor said he didn't think she had Lyme in spite of bullseye rash, spontaneous Arthritis and several other obvious symptoms. Got second opinion, same result. Gave up on doctors at that point.

2- How many medical professionals did you see to before getting diagnosed with Lyme/tick-borne disease?

Never diagnosed by doctor.

3- How long did it take you to get diagnosed?

Never diagnosed by doctor.

4- Are you only treating Lyme, or are you also treating co-infections, and if so, which ones? If you know.

Lyme, Babesia, Bart, Brucella. Lyme is all that is left now. Possibly some Brucella.

5- Are you still sick?

No.

6- Are you better or worse since you got sick – Give %?

100% with occasional Lyme treatment.

7- How many years ago did your symptoms start?

9 years ago.

8- Did you/do you treat with
antibiotics/alternatives/herbals?
Please describe what's been helpful/not helpful.

Initially Samento & Cumanda. Quickly switched to Rife frequency treatments. Tried MMS for a while. Stomach couldn't take that or any oral treatment very long. Stomach would give out.

9- Do you have an LLMD/Other?

No doctor of any kind.

10- What would you do different if you knew what you know today?

Treat with MMS immediately, along with frequency treatments. Not waste time with doctors.

11- List of best sources for price-competitive supplements/immune support products?

Swansons. Dr Mercola.

12 Most helpful books & websites.

Rife forum, Lymenet, Rifing Lyme Facebook site, several other sites.

Where there is a will, there's a way. I have managed to put two chronic diseases at rest using frequency treatments. Everyone should make it a point to learn what can be done with this treatment method. It's too important not to.

Dan

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lymie_in_md
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1- How did you find out you had Lyme?
... From a Dentist/Physician, he use ART and he sent me for an Electro Dermal Screening a biofeedback device it corroborated his diagnosis. He's treated many with lyme, he mostly treats cancer patients. I recently got bitten again, this time the western blot was positive and had a clinical diagnosis.

2- How many medical professionals did you see to before getting diagnosed with Lyme/tick-borne disease?
... About 10, on the second time 1

3- How long did it take you to get diagnosed?
... The physician who uncovered it believed I had it as a teenager about 40 plus years, second time 15 days

4- Are you only treating Lyme, or are you also treating co-infections, and if so, which ones? If you know.
... I treat what I what I now test for, I've had lyme and bartonella -- I treat everything though

5- Are you still sick?
... No from the first bout and no from the second

6- Are you better or worse since you got sick – Give %?
... 100% better

7- How many years ago did your symptoms start?
... 8 years

8- Did you/do you treat with
antibiotics/alternatives/herbals?
Please describe what's been helpful/not helpful.
... first time with herbals, photons, zappers, homeopathy, meditation

9- Do you have an LLMD/Other?
... I personally don't bother with them. The dentist physician treated my TMJ, metals and amalgams.

10- What would you do different if you knew what you know today?
... Start with photons sooner, know better how to use herbals, and start using a biotensor much sooner. I would have gotten a rife machine which I never did.

11- List of best sources for price-competitive supplements/immune support products?
... Nature, if you know the plants you can create your own tinctures,

12- Most helpful websites & Books
... Website in general -- there is just a slew of information, just got to be asking questions to look for the answers. I like lymenet for info, I learned alot here

I'm probably like Dan and some others who have gotten well. How do we create a fool proof protocol that doesn't break the bank, but gets our lymie sisters and brothers well. And how do we inform llmds.

--------------------
Bob

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Lymedin2010
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1- How did you find out you had Lyme?

Bit in 1995 & I had it for years. In 2010 had a few symptoms that indicated I would have problems & by 2011 it was life threatening. I suspected Lyme based upon few people around me that got bit & I started asking questions. I found out that many around me were bit & I knew it had to be Lyme.


2- How many medical professionals did you see to before getting diagnosed with Lyme/tick-borne disease?

5 doctors/hospitals in rapid succesion 2 months time & a LLMD rapidly saw me & diagnosed me based upon symptoms.

3- How long did it take you to get diagnosed?

Since bite 15 years since bite & 16 years to the point where I was chronically sick.

4- Are you only treating Lyme, or are you also treating co-infections, and if so, which ones? If you know.

Clinical babs, bart & lyme. High EBV & Myco tieters.

5- Are you still sick?

Yup

6- Are you better or worse since you got sick – Give %?

Worst. I was 90-95% better after the first 3-4 weeks of IV Rocephin & it was a life saver & then just got worst with IV Rocephin & developed stroke like symptoms. LLMD did not lsiten at the time said you have to get worst to get better, but I was developing new Lyme symptoms that let me know it was Lyme, rather than just wondering. Now I am only at 40-50% with many symptoms.

7- How many years ago did your symptoms start?
Headaches & tiredness started 6-7 years after bite & grew gradually. Most likely I must have been unknowingly bit again.

8- Did you/do you treat with
antibiotics/alternatives/herbals?
Please describe what's been helpful/not helpful.

In the beginning ABX mostly & then with herbs & ABX.

Most helpful: IV Rocephin, Doxy, Bacillin shots, Penicillin VK, Cryptolepsis, A-Babs, Liver protect, & charcoal/detox.

9- Do you have an LLMD/Other?
On my 2nd LLMD now.

10- What would you do different if you knew what you know today?

I would have stopped ABX treatment at the 3-4 week mark & concentrated on immune support, sleep, diet, & exercise. Who knows where I would end up though, anyone's guess.

11- List of best sources for price-competitive supplements/immune support products?

Online hunting, no one place that has it all.

12- Most helpful websites & Books

Cure Unknown
Why can't I get better
Under Our Skin 1 & 2
Lymenet, facebook, twitter, youtube, healingwell.com


If a LLMD is not helping you & you are getting worst, then just move on. Just because they are LLMD does not mean they know it all & it is all guess work. It helps to exchange info & hear from other Lymies.

Most important thing for Lymies & prior to ABX or herbs:
-Sleep
-Nutrition/diet
-Less stress & overworked

Even if you are taking the best ABX & herbs, if you are not engaged in the above it can all be useless. This all depends though on what stage of the infection you are in & things can escalate quickly from not doing so bad to worst.

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johnny_broadway
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1- How did you find out you had Lyme? I starting having a lot of cognitive symptoms (brain fog, couldn't concentrate, loss of interest, etc), tingling on forehead and scalp, mild psychosis, derealization, and lack of energy.

2- How many medical professionals did you see to before getting diagnosed with Lyme/tick-borne disease? I saw a few psychologists/psychiatrists before finally being referred to a local non-LLMD who actually diagnosed me after doing an Igenix test after I told them I knew I had something else wrong with me.

3- How long did it take you to get diagnosed? 8 years.

4- Are you only treating Lyme, or are you also treating co-infections, and if so, which ones? If you know. Really only Lyme so far, but no Oral AB have helped me in the past. Alternative treatments have also proved pretty fruitless for me thus far. Dietary changes helped a little.

5- Are you still sick? Yes. Slightly better than I was, but still struggle every day with no energy and cognitive problems.

6- Are you better or worse since you got sick – Give %? 15% better.

7- How many years ago did your symptoms start? 16 years when I was around 14 years old.

8- Did you/do you treat with antibiotics/alternatives/herbals? Please describe what's been helpful/not helpful. I've tried treating with all the usual oral antibiotics initially. Also alternative treatments including heavy metal chelation, mercury removal at wisdom tooth sites, IVB therapy, GcMAF, hydrogen peroxide IV's, Salt+C protocol, many, many supplements and therapies when seeing Dr. K, and have changed my diet drastically. Nothing has had any lasting effect besides minor improvement from dietary changes. All of the symptoms I initially had I still have. My next step is to try IV AB which hopefully can provide some relief since I have a more neurological manifestation of LD.

9- Do you have an LLMD/Other? I've been through many, but yes I started seeing a new one a month ago.

10- What would you do different if you knew what you know today? There have been times throughout the journey where I have essentially "given up" without really being cognizant of it. I would have stopped focusing so much on my Lyme and tried to focus on Christ and living instead. Also, when I began I placed my health in the hands of the doctors. After years of treatment, I've (somewhat cynically) learned that nobody really cares about your health and that you're your only advocate. If you aren't an active participant in your own health, no one else will be either.

11- List of best sources for price-competitive supplements/immune support products? I usually find my supplements for decent prices and free shipping on Amazon.

12- Most helpful websites & Books "Why Can't I Get Better" by Horowitz was an okay one that gave me ideas for other things to test.

Posts: 30 | From Las Vegas | Registered: Mar 2008  |  IP: Logged | Report this post to a Moderator
kimmie
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Member # 25547

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- How did you find out you had Lyme?

Positive western blot and symptoms

2- How many medical professionals did you see to before getting diagnosed with Lyme/tick-borne disease? 10-15

3- How long did it take you to get diagnosed? 4 months

4- Are you only treating Lyme, or are you also treating co-infections, and if so, which ones? If you know. treating multiple pathogens

5- Are you still sick? no

6- Are you better or worse since you got sick – Give %? 90-95% better

7- How many years ago did your symptoms start? 5 years ago

8- Did you/do you treat with
antibiotics/alternatives/herbals?
Please describe what's been helpful/not helpful.

6 months IV antibiotics until gut went out than switched to alternatives
most helpfl: photons, ozone, cellfood, chlorine dioxide/MMS, systemic enzymes, MSM/sulphur

9- Do you have an LLMD/Other?

see her once a year for follow up. I treat myself based on my research

10- What would you do different if you knew what you know today?

pulse antibiotics instead of taking daily and be open minded towards alternative treatments sooner. Started antimicrobials like collidal silver or herbals while waiting to see MD

11- List of best sources for price-competitive supplements/immune support products?

Iherb.com

12- Most helpful websites & Books:

websites: lymenet, cancertutor.com

Books: "flood your body with oxygen" by Ed McCabe, "Cancer step outside the box"
currently ready "Healing the autism"by Kerri rivera and learning about chlorine dioxide

Posts: 747 | From Utah | Registered: Apr 2010  |  IP: Logged | Report this post to a Moderator
Brussels
Frequent Contributor (5K+ posts)
Member # 13480

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1- How did you find out you had Lyme?
EM rash. Then declared cured.

My lyme disease started after being declared 'cured' by the local doc. I knew it was lyme by a borderline Westernblot. Before abx, it was positive.

2- How many medical professionals did you see to before getting diagnosed with Lyme/tick-borne disease?
17 exactly.

3- How long did it take you to get diagnosed?

Immediately with the rash.
When I fell sick, it was about 9 months.

4- Are you only treating Lyme, or are you also treating co-infections, and if so, which ones? If you know.

No treatment anymore for the last 5 years.

5- Are you still sick?

My teeth are sick now.

6- Are you better or worse since you got sick – Give %?

Much better. I almost died when I first fell sick with lyme.

7- How many years ago did your symptoms start?

9 years ago.

8- Did you/do you treat with
antibiotics/alternatives/herbals?
Please describe what's been helpful/not helpful.

Abx a bit: a bit helpful, but far from enough.

Loads of herbals like Buhner, Chinese herbs, dr. K's and dr. C tinctures: helpful, but I kept relapsing.

Then homeopathic stuff, loads, in all types of mixtures or alone: very helpful. I did it with herbs.

At last, I found photons and nosodes: it literally put borrelia dormant.

9- Do you have an LLMD/Other?
Dr. K's followers.

10- What would you do different if you knew what you know today?
I would have avoided all abx, as they messed with my gut. I would take it only if I found nothing else.

I wouldn't have taken salt/C: too aggressive.

I would start with photons + nosodes directly, then support the organs with homeopathy and herbs, plus tapping, probiotics, supplements.

Then try to treat the left overs: coinfections, teeth, heavy metals, whatever remains as problems.

11- List of best sources for price-competitive supplements/immune support products?
At the time I was treating: 1st Chinese herbs was great. Homeopathy is usually very inexpensive: Sanum, Heel, and non-brand stuff that can be bought all over here in Europe.

Posts: 6199 | From Brussels | Registered: Oct 2007  |  IP: Logged | Report this post to a Moderator
Andie333
Frequent Contributor (1K+ posts)
Member # 7370

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1- How did you find out you had Lyme?

It was my acupuncturist who told me.


2- How many medical professionals did you see to before getting diagnosed with Lyme/tick-borne disease?

At least 16.

3- How long did it take you to get diagnosed?

6 years, but prior to that I'd been undertreated for a tick bite and rash 10 years earlier.

4- Are you only treating Lyme, or are you also treating co-infections, and if so, which ones? If you know.

Bartonella as well as Lyme.

5- Are you still sick?

Yes.

6- Are you better or worse since you got sick – Give %?

I'm thankfully much better--about 80 to 85% better.

7- How many years ago did your symptoms start?

14 years ago.

8- Did you/do you treat with
antibiotics/alternatives/herbals?
Please describe what's been helpful/not helpful.

After unsuccessfully trying to get off antibiotics, I now treat with high dose antibiotics as well as supplements. Using Teasel Root as an antibacterial did NOT work for me at all. My bacterial count skyrocketed again during that time.

9- Do you have an LLMD/Other?

I see a Lyme specialist in NY. Also get acupuncture and shiatsu.


10- What would you do different if you knew what you know today?

I would have paid out of pocket to get extended IV antibiotics.

11- List of best sources for price-competitive supplements/immune support products?

I shop around, often Vitamin Shop specials and Amazon prime.

12- Most helpful websites & Books

Lymenet. FB pages.

Posts: 2549 | From never never land | Registered: May 2005  |  IP: Logged | Report this post to a Moderator
   

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