posted
Hi, New here and posting for my daughter. She's 24 and was diagnosed with Lyme at the end of the summer (no positive test, but lots of tick bites from hiking in July).
She was put on a month of doxy, did better, then was off for 3 weeks and started suffering joint pain, joints "cracking and popping", fatigue, etc. She went back on Doxy and is finishing up another 4 week course.
She has been getting worse for the past two weeks. Her doctor put her on gabapentin as well for nerve pain, which (maybe along with the doxy) seemed to help briefly, but now she is getting worse daily and can barely walk.
She has an appt with a Lyme dr (naturopath) in two weeks and her regular dr says it is post-lyme syndrome and there is nothing more they can do. She is trying to hang in there until her appt with the naturopath but she is suffering so much.
She eats very clean, loves to hike and do yoga. Currently she is taking:
"Morning: Doxy and that probiotic without food.. then one hour later: i take almost 500mg of alleve.. and 1 tylenol extra strength (500mg) and 1 gabopentin 300mg and glucosaime
Afternoon: the probiotic i don't take with doxy.. two tylenol extra strength (usually need for pain during work).. another 300mg gabopentin.. curcumin Morning and night are the same doses/medications"
Would anyone have any advice at this point?? Any input would be much appreciated!
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(breaking up the post for easier reading for many here)
posted
OP I'm so sorry for your beautiful daughter-- her life will never be the same but don't give up hope. The same exact thing happened to me at age 34!! And I was treated immediately-- so this "catch it early and cure it" thing is lying BS for me. I now have chronic Lyme with massive OspA arthritis.
A cyst is a hardened "turtle shell" that contains 12 more viable baby spirochetes!!!... Cysts are viable for up to 18 months, according to amazing scientific peer review research by the Brorson cousins in Norway.
So--- when you take doxy, you are CAUSING the live lyme spirochetes to go dormant into cysts with 12 more babies each-- each planning on living the good life inside you--- after the Doxy is withdrawn!
This is why you get a reduction in arthritis symptoms while you are on Doxy-- the live spirochetes go dormant .
BUT---This is also why the symptoms return with a vengeance once you go off Doxy--- because you now have up to TWELVE TIMES more spirochetes in your body--- and you are sicker than when you started treatment!!
So... whats the solution?
Grapefruit seed extract(GSE) is proven scientifically to kill cysts. A prescription medicine that also kills cysts is Flagyl--- the Burrascano protocol which is proven to work. The Flagyl (or Tinidazole) must be taken at the SAME time as the antibiotic (Amoxicillin) so that a person does not get a huge increase in cysts. She must take this combo until she has no more symptoms ---and then for two months after.
PM Keebler for the Burrascano protocol. I am not a medical doctor is this is not medical advice, just my personal observations, and Keebler's knowledge.
Good luck OP and I am sorry about your daughter... and believe me--- I am also a Doxy and Amoxicillin failure because I did not address cystic forms at the time.. You do need to address cystic forms-- either with prescriptions or with herbals.
God bless you and good luck. Ill pray for your lovely daughter who should not be suffering at age 24.
Posts: 696 | From New York | Registered: Aug 2006
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posted
Oh one last thing-- (I am not a doctor is this is not medical advice)
My arthritis (lyme arthralgia) has substantially cleared up in the past few days (I can walk down the stairs now!!) since I went on the following herbals-- I don't know which one of the herbals has cleared the arthritis and I don't know if this many herbs is even safe, but something among these is definitely working for me and I was so tired of being a cripple that I tried the following:
Neem (1 capsule 3 times a day- antiparasite, antispirochete);
Licorice Root Tea with Manuka Honey (or a licorice root capsule--Licorice is a toxin binder and contains saponins which kill spirochetes, Manuka is anti bacterial ),
Burdock root tincture (30 drops in soda water once a day-- anti biofilm was once used as a cure for syphilis, another spirochete);
Mangosteen juice (2 ounces mixed with soda water once a day-- contains xanthones which kill spirochetes;
Sarsaparilla (50 drops mixed with Soda water- 1-3 times a day-- contains saponins which kill spirochetes, also binds endotoxins),
Pomegranate Juice (1 glass- anti biofilm),
Grapefruit Seed Extract (15 drops in water 2 or 3 times a day-- anti cyst, spirochete and biofilm)
Monolaurin (coconut) (1 scoop 3 times per day- anti spirochete, cyst and biofilm)
Cilantro tincture with Chlorella and green drink(one per day-- detoxifies mercury and aluminum, alkalinizes blood);
Turmeric anti inflammatory, antimicrobial,
N-Acetyl Cystine (anti biofilm, )
Bromelain and Boluoke or other proteolytic enzyme 1 times a day-- antibiofilm, anticyst.
Most of the above are available at Vitamin Shop except Cilantro tincture which you can get online, but which must be taken with chlorella.
Personally I suspect that what is helping with the arthritis is the Licorice root tea and or capsule-- which apparently binds the botulinum-like endotoxin produced by Lyme which makes us feel so bad.
OR it could be the Mangosteen juice which have spirochete killing xanthones-- but this is just a hunch.
Good luck healing.
Posts: 696 | From New York | Registered: Aug 2006
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posted
What herbals address cyst forms? According to nutrihacker I should avoid grapefruit (23&me results) so assuming that means avoid GSE too?
Posts: 85 | From United States | Registered: Jun 2015
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"Morning: Doxy and that probiotic without food.. then one hour later: i take almost 500mg of alleve.. and 1 tylenol extra strength (500mg) and 1 gabopentin 300mg and glucosaime
Afternoon: the probiotic i don't take with doxy.. two tylenol extra strength (usually need for pain during work).. another 300mg gabopentin.. curcumin Morning and night are the same doses/medications"
- She's taking doxy WITHOUT food?? Her stomach will crash and burn very soon. I know the med instructions say without food, but whoever wrote that has never taken doxy long term. I'm surprised she is not throwing up.
I always took doxy in the MIDDLE of a FULL meal. Do not lie down for 45-60 min after taking it.
Take probiotics at least two hours away from antibiotics as they cancel each other out.
Yes, flagyl is recommended, but it can also be a very dangerous drug. Make sure to watch for any nerve damage as it can become permanent.
I know some doctors recommend taking ibuprofen with Tylenol, but I personally would not attempt it. It will adversely affect the liver and you will not like the result.
I took Tylenol below the recommended dosages for a year and a half and my liver is a mess. Now I can't take it at all.
She might be better off taking the curcumin three times a day and leaving off the Tylenol. I always take the curcumin with food also.
She absolutely MUST FIND an LLMD right away. She cannot go on like this without expert help.
quote:Originally posted by nyclymedout: What herbals address cyst forms? According to nutrihacker I should avoid grapefruit (23&me results) so assuming that means avoid GSE too?
Hi nyc-- I haven't taken the 23&me test yet (its up to $199 from $99 now drats!) -- but I know that I have a methylation problem since both SAMe and the methyl B with L-5-MTHF work incredibly well for me. I also respond very well to MSM.
So as far as the grapefruit GSE you will have to trust nutrihacker.
I don't seem to have any bad effects at all from the Grapefruit Seed Extract-- and I actually enjoy the bitter taste in soda water--- its kind of like quinine-- another herb used to treat Malaria in British India... (the brits were not stupid...they took their quinine with gin...)
As far as other herbs that are proven in vitro to kill cysts, I think the chinese herb Skullcap (baicelein?) has been studied and proven to be effective against borrelia cysts by the Rath Institute:
"In vitro evaluation of antibacterial activity of phytochemicals and micronutrients against Borrelia burgdorferi and Borrelia garinii," by Goc A1, Niedzwiecki A1, Rath M1. LINK: http://www.ncbi.nlm.nih.gov/pubmed/26457476
Skullcap rarely can cause an elevation in liver enzymes though, if taken with Valerian. ( I bought some Skullcap tincture, but will only take it when I discontinue every thing else, and will only pulse it for a short time-- like two weeks. Its available at Vitamin Shoppe.
The only other proven cyst busters I know of are Flagyl and one other prescription one that I have forgotten the name of.
Good luck with the grapefruit/GSE
Posts: 696 | From New York | Registered: Aug 2006
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posted
Thanks a lot for the background guys. My GP suggested Amox, Doxy, and Plaquenil. No way I want to do Plaquenil because of vision issues and it being in the quinolone family.
LLMD suggested Bicillin shots weekly plus Zithromax along with several herbs such as semento and a few others. Want to ensure I'm hitting cysts as well.
Posts: 85 | From United States | Registered: Jun 2015
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
That post lyme stuff is baloney. It is just undertreated lyme.
Good to get to a LLMD or ND, if that suits you.
Posts: 2888 | From USA | Registered: Mar 2004
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WPinVA
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posted
She definitely needs an LLMD! In Mass, there must be a local Lyme support group where she could get advice on local doctors. Also, detox is very important.
Posts: 1737 | From Virginia | Registered: Aug 2011
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posted
Taking turmeric everyday is relieving my joint and muscle pain. I get it in bulk at the health food store and dip 00-size capsules into it, take a couple a day.
I see a chiropractor for joint subluxation pain alleviation. It's a temporary fix.
About the barely can walk part, if it's anything to do with spasming muscles, she needs to be taking magnesium. I also stretched all my muscles out in the pool over 9 months time and got myself walking again - ie, blood flow in, waste products out. That was before I found out I had Lyme.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Hi, thank you guys so much for the info so far. She is scheduled to see a naturopath who came highly recommended for lyme at the end of the month. She's been trying to get in somewhere sooner because she's so miserable. I wondered about magnesium, but I've read conflicting things... lyme bacteria deplete mag, but because they use it it can make symptoms worse.
I will also tell her to make sure to take the doxy with food. I didn't know she was taking it on an empty stomach until I asked. I got two types of probiotics for her, one is Saccaromyces Boulardii, which is a probiotic yeast that can be taken WITH antibiotics and then a regular probiotic that she takes away from the abx.
I just can't believe she's in this much pain while on doxy... I was hoping it was just a herx, but it's been about a week at this level of pain and getting worse. Posts: 10 | From Massachusetts | Registered: Jun 2013
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poppy
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Member # 5355
posted
There are some people who think we should starve out the spirochetes, but this is not possible. Lyme people need to replace what is being used by these unwelcome guests, or suffer because we need it too. They are parasites in that they need to get these things from us while they are living in us.
So, magnesium should be taken definitely. Some forms are more bioavailable than others and that is what you want--it kicks in faster. That goes for some other things too. But there are restrictions....such as sugar and carbs. Reduce those because they feed candida, which can get out of hand when a person is on antibiotics. Candida=yeast infection.
Posts: 2888 | From USA | Registered: Mar 2004
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poppy
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posted
And NO ALCOHOL!
Posts: 2888 | From USA | Registered: Mar 2004
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poppy
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posted
Have you read the Burrascano sticky at the top of this forum? If not, that should be done pronto. It is better than any advice from patients.
quote:Originally posted by Robin123: Taking turmeric everyday is relieving my joint and muscle pain. I get it in bulk at the health food store and dip 00-size capsules into it, take a couple a day.
I see a chiropractor for joint subluxation pain alleviation. It's a temporary fix.
About the barely can walk part, if it's anything to do with spasming muscles, she needs to be taking magnesium. I also stretched all my muscles out in the pool over 9 months time and got myself walking again - ie, blood flow in, waste products out. That was before I found out I had Lyme.
Yes Robin-- the scientific evidence supports your experience, and Curcumin also kills a spirochete known as Treponema Denticola. ( I take it every day but unfortunately for me, it did not help my arthritis) From what I have heard, it is better absorbed with black pepper from some reason.
Curcumin (the active compound in the spice Turmeric) is also--- SURPISE, SURPRISE--- anti spirochaetal and anti-biofilm formation-- at low blood concentrations, which is good!!
See its effects on the spirochete TREPONEMA DENTICOLA in the peer review study below....
LINK: http://www.ncbi.nlm.nih.gov/pubmed/26447754 ------------------------------------------------------ "Antibacterial Activity of Curcumin Against Periodontopathic Bacteria", by Izui S1, Sekine S1, Maeda K1, Kuboniwa M1, Takada A1, Amano A1, Nagata H1.
Abstract BACKGROUND: Curcumin is a polyphenol extracted from root of turmeric, and known to possess multifunctional properties, including antibacterial activity. Although previous studies have investigated the effects of curcumin on microorganisms, available knowledge on the effects of curcumin on periodontopathic bacteria is still limited. In this study, we investigated the antibacterial effect of curcumin on periodontopathic bacteria, particularly Porphyromonas gingivalis. METHODS: Representative periodontopathic bacteria were cultured in media with and without various curcumin concentrations, and the optical density at 600 nm was measured for 60 hours. The inhibitory effect of curcumin on P. gingivalis Arg- and Lys-specific proteinases (RGP and KGP, respectively) activities were assessed using spectrofluorophotometric assay. Analysis of biofilm formation by P. gingivalis with or without Streptococcus gordonii was conducted using confocal laser scanning microscopy (CLSM). RESULTS: Curcumin inhibited the growth of P. gingivalis, Prevotella intermedia, Fusobacterium nucleatum, and Treponema denticola in a dose-dependent manner. Bacterial growth was suppressed almost completely at very low concentrations of curcumin. On the other hand, 100 μg/mL of curcumin did not suppress the growth of Aggregatibacter actinomycetemcomitans. It also demonstrated inhibitory effects against RGP and KGP activities in a dose-dependent manner. CLSM revealed that curcumin suppressed P. gingivalis homotypic and P. gingivalis-S. gordonii heterotypic biofilm formation in a dose-dependent manner. A concentration of 20 μg/mL of curcumin inhibited these P. gingivalis biofilm formations by more than 80%. CONCLUSION: Curcumin possesses antibacterial activity against periodontopathic bacteria, and may be a potent agent for preventing periodontal diseases. KEYWORDS: Biofilms; Curcumin; Periodontal diseases; Porphyromonas gingivalis
Posts: 696 | From New York | Registered: Aug 2006
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Since you mentioned that she was bitten in July 2015 and that you are new to Lyme--- you are at least getting on top of it quickly!
Off hand, I noticed that you joined the forum in June 2013---
----- two years prior to when your daughter was bitten--- so you must have had another family member with Lyme, or you yourself were bitten and you are not quite so new to Lyme?
Sorry-- just a silly observation..
How has the treatment for that person worked out so far?
Hope your healing progresses well.
Posts: 696 | From New York | Registered: Aug 2006
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posted
Yes, I did join a couple years ago when a friend in CT was having some odd symptoms. I thought it worth looking into, but she never pursued it with a lyme dr and her symptoms (mostly) resolved. I still have my suspicions, though.
I am surprised at how quickly my daughter became so sick after treatment with doxy follwing being bitten in July. My guess is that there is at least one coinfection going as well, of course. And since she was bitten by multiple ticks, can multiple infected ticks cause a worse case of lyme?
quote:Originally posted by WakeUp: Monarch-cat (New to Lyme)-
Good luck with your daughter's healing.
Since you mentioned that she was bitten in July 2015 and that you are new to Lyme--- you are at least getting on top of it quickly!
Off hand, I noticed that you joined the forum in June 2013---
----- two years prior to when your daughter was bitten--- so you must have had another family member with Lyme, or you yourself were bitten and you are not quite so new to Lyme?
Sorry-- just a silly observation..
How has the treatment for that person worked out so far?
Hope your healing progresses well.
Posts: 10 | From Massachusetts | Registered: Jun 2013
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posted
The "after doxy" effect happened to me exactly. Dr. Eva Sapi's chart shows a dramatic increase in cysts with doxy!
This is exactly why the Chronic Lyme Denialists must be exposed and dismissed by mainstream science-- they are actually harming hundreds of thousands of people like me and your daughter--- by denying the existence of cysts and biofilm, and teaching other doctors that its "just post Lyme syndrome." They are also discouraging research on cysts and biofilm, while focusing mostly on research on ticks
They have not kept up with the massive level of science on lyme cysts and biofilm--- and sadly we must no longer financially support the LDA until they prohibit such dinosaurs from speaking at their educational conferences. These people are directly hurting us----- in so many ways.... and I hope the LDA will explain their presence at the conference to we-- the patients who have suffered so much.
I hope the LDA will also continue to finance Dr. Sapi in 2015-16. And I wish that they would give that Cytoviva microscope back to Dr. MacDonald, and also give him the large grant he (and we) so richly deserves..
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