Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
I'm on day 19 of my 28 days of doxycycline treatment for a bulls-eye rash.
Is it too late to start a cyst buster?
I've seen recommendations for grapefruit seed extract and bromelain.
Does anyone know the dosage and if they should be taken with or without food?
I got horribly ill from a grapefruit seed nasal spray and I'm very allergic person (I don't know if I'll be able to tolerate bromelain.
Any other suggestions for natural cyst busters???
Thanks!
Posts: 2839 | From California | Registered: Jul 2012
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Dosage for GSE is 3 capsules twice daily. You can take it with food and your antibiotics. Take it away from your probiotics.
If you get sick from GSE nasal spray I don't know if you should take it orally. That might be risky. You could try a very low dose. Possibly part of a capsule and see how you do. Take some benadryl with it.
That is the only natural herbal cyst buster that I know of.
Posts: 5237 | From here | Registered: Nov 2007
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Summer3
Frequent Contributor (1K+ posts)
Member # 35286
posted
I take bromelain, but for joint pain and to help me eat. I take 1000mg 2-3 times per day. I have not heard of it as a cyst buster.
I don't feel any effects from GSE even though I would prefer to use something natural for cysts.
Do you think you will seek a LLMD when your 28 days runs out? Many believe that even in the early stages it's best to attack all three forms by using a combo of doxy, zith or biaxin and flagyl.
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
"Do you think you will seek a LLMD when your 28 days runs out?"
I believe the issue is finding an LLMD doc who has time to see me. I've been going back and forth with phone messages to one that's booked up, but he's the best I've found so far.
I know that time is of the essence because this is still early.
I have to self-treat in the meantime.
It's the last week of doxycycline. I just read that you can't take grapefruit seed extract if you're on a blood thinner. I have high blood pressure and don't know if it will conflict with my treatment for that. Ugh.
Posts: 2839 | From California | Registered: Jul 2012
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posted
Judie, just asking.How much Doxy a day are you taking,and is your rash gone.Mine was gone in about 12 days after takng 400mg per day of Doxy.
-------------------- nn Posts: 103 | From Northen Neck Va | Registered: Jun 2012
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
I'm taking 100 mg, twice a day. The rash went down pretty fast (not red and angry) in a just a few days after starting the doxy. There's still a very small area that looks more like an allergic reaction (bumpy) around the border, than the smoothness of the original rash.
I've been herxing really bad on this dose of doxy (my body is very sensitive).
I would like to go up on the daily dose, but I've wound up in the hospital because of toxic exposure several years ago and am scared to push the dose per day any higher.
Posts: 2839 | From California | Registered: Jul 2012
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posted
Thanks for responding,it seems that Doxy knocks the Lyme out very well if you start it at an early stage ,but of course now is when it gets complicated.Studies say that Doxy turns some of the Lyme into cyst form in a culture dish,but my question is,do you get those same percentage results inside the human body.Also,what is the percentage of cyst form kill in the human body,when you take cyst busting abx,s.When do you know when to stop taking abx's and be sure you have a hundred percent kill.Doxy kicked my butt,but supposedly the cyst busting abx's are even harder on you than Doxy..Some here say,abx's are not for them,others swear by them.The same goes for natural remedies.I, like you, can be sensitive to meds,I had an allergic reaction to blood pressure med that almost killed me.I just don't feel comfortable pumping all this crap into my body when the science is not clear enough yet.All I know is that I took a good amount of Doxy at an early stage, to the point where it made me sick ,my rash is gone,my blood tests are negative,I feel fine now,I'm done.Of course I will try to listen to my body the best I can for symptom return.I think you have to be careful of overkill to the point where you can do more harm to yourself then good.
-------------------- nn Posts: 103 | From Northen Neck Va | Registered: Jun 2012
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Nnecker, you might want to doublespace your responses (hard on the eyes). You can edit this by using the icon with the pencil above your post.
People with lyme often have difficulty reading single spaces (they will pass your responses by).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
Hey Nnecker,
Thanks for you response and understanding. I'm sending you a PM.
Posts: 2839 | From California | Registered: Jul 2012
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lightfoot
Frequent Contributor (5K+ posts)
Member # 2536
posted
A couple important points:
1.) The rash will go away with or without ABX (antibiotics).
2.) Symptoms can also recede without ABX only to surface in days, weeks, months or even years.
3.) A bulls eye rash is unequivocal. It is undisputed. You have Lyme.
4.) Negative blood tests mean nothing. There is no way of testing to assure that you do not have Lyme at any stage.
5.) Treating a new infection with ABX is your best chance of kicking it. Thirty days is NOT enough.
So, that is the science.
Here on the forum you can see a discussion of whether to use ABX or alternatives. Trust me. Those conversations are between those of us with CHRONIC Lyme. Those are the folks who didn't have the opportunity to treat the infection when it was new as yours is. You are very lucky to have had the bulls eye!!! Most people never have that warning.
The LLMD who finally helped me get started on treatment told me this, "Any problems caused by ABX are completely paled when compared to the damage that Lyme will do". At that time....I didn't want 'to put all that junk into my body'. Interestingly he also uses alternatives. He is right. Look around you.
An LLMD is your best chance to meet your questions and needs. Perhaps you can explain to the staff by phone of your precarious position right now. Good luck!!!
PS Changing the title of your post will serve to get more responses regarding your current situation. NEW BITE will get you some responses that address this now.
-------------------- Healing Smiles.....lightfoot Posts: 7228 | From CO | Registered: May 2002
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lightfoot
Frequent Contributor (5K+ posts)
Member # 2536
posted
up
-------------------- Healing Smiles.....lightfoot Posts: 7228 | From CO | Registered: May 2002
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posted
Lightfoot as far as my statement the science is not clear,look at what TF posted about their being rash only strains of Lyme,and when it comes to existence of biofilms of Bb here is what Dr MacDonald,an associate researcher of Dr Sapi said to a poster on Lymenet Europe who was questioning the validity of his research.Dr MacDonald said on Feb 8,2012 "MY EVIDENCE ABOVE DOSE NOT YET PROVE THE EXISTENCE OF BIOFILMS OF BORRELIA BURGDORFERI.AT THIS TIME THERE IS NO PUBLISHED PEER REVIEWED PAPER TO ENDORSE THE EXISTENCE OF BORRELIA BIOFILMS.So that is science from a scientist researching Lyme.You can do what you want.Me,I am not going to OD myself on abx,s and God knows what ground up weeds some people take, when a Lyme research scientist says something like that.
-------------------- nn Posts: 103 | From Northen Neck Va | Registered: Jun 2012
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AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
Dr. Alan McDonald released a statement in 2012?
I heard he has "Alzheimers!"
or... is this another Dr. McDonald?
Posts: 1432 | From New Jersey | Registered: Jan 2012
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AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
You may want to ask your doc about this:
Study Shows Tinidazole should be First Drug of Choice for Lyme
May 2011 study (Tinidazole more effective than Doxycycline)
I have no other info about this drug, so with your allergies ...?
Posts: 1432 | From New Jersey | Registered: Jan 2012
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
Hi Nnecker:
You have to decide what to believe. There are two sides to the controversy and Dr. M's work on cysts is one of the points the IDSA will not admit to as it would be a large crack in their position on there NOT being persistent lyme.
It is not only Dr. S who has done work on spirochetes and cysts. You can actually see some on youtube, the cameras / pictures have gotten that good.
Dr. M originally theorized based upon syphilis research as that spirochete was known to form cysts in harsh environments. He was the first with an electron microscope.
Dr. S has a better microscope but her work is with the test tub versus human.
The evidence slowly mounts against the IDSA but they have dug in their heels. They have also blocked papers contrary to their opinions.
I did have the chance to go to a UNH presentation by with Dr. S and her research students work. Quite impressive and it validated Dr. M's work on cysts and bio films.
Good luck
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Dr. Alan MacDonald is better. He's going to be a presenter for the autumn ILADS conference this year.
I called ILADS when I saw the speaker line up and they said "he is doing very well." That is excellent news, indeed.
He was not diagnosed with alzheimer's but rather with a degree of dementia not so much as dx but symptom (as was stated at the end of the DVD "Under Our Skin" documentary), which can have many causes - and can have a turn around when the cause is properly discovered and treated.
lightfoot
Frequent Contributor (5K+ posts)
Member # 2536
posted
I am in the dark as to how the quote below relates to a new bite. Someone, please enlighten me.
quote:Dr MacDonald said on Feb 8,2012 "MY EVIDENCE ABOVE DOSE NOT YET PROVE THE EXISTENCE OF BIOFILMS OF BORRELIA BURGDORFERI.AT THIS TIME THERE IS NO PUBLISHED PEER REVIEWED PAPER TO ENDORSE THE EXISTENCE OF BORRELIA BIOFILMS.
-------------------- Healing Smiles.....lightfoot Posts: 7228 | From CO | Registered: May 2002
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posted
All I am saying is before you put some ground up tree bark or some high dose biofilm busting abx inside of you,that could have a bad side effect,you might want to have a research scientist admit that they have proven they even exist,let alone know what they can do inside a human body.As far as how it relates to a new bite a lot of people on here say you need to take cyst busting abx's for it.
-------------------- nn Posts: 103 | From Northen Neck Va | Registered: Jun 2012
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lightfoot
Frequent Contributor (5K+ posts)
Member # 2536
posted
An important point in this discussion is:
biofilms and cysts are two different entities.
The cyst form of Bb has been observed and documented.
Biofilms are a different kettle of fish.
-------------------- Healing Smiles.....lightfoot Posts: 7228 | From CO | Registered: May 2002
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
nnecker .welcome...see you're pretty new here.
trying to read thread, but as stated above, most of us have a hard time reading lots of black on white lines close together
so did Dr. Mac......have Lyme symptom's and that's what is better?
Auntylynn..you don't see that med as most of the protocol/s here...Reason??/
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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posted
nonna I will try to make this short as I can. A poster disputed Dr Mac and his colleague DR Sapi's research on a thread at Lymenet europe, and said they where responsible for unproven and potentially harmful quack remedies,claiming to be cystbusters and biofilm disolvers all based on their unproven hypothesis. Dr Mac replied by giving the poster his six beliefs why biofilms are PLAUSIBLE and then states, "My beliefs and the evidence dose not prove the existence of biofilms. My medical practice has never involved prescriptions for therapy of any type.I do not have any knowledge about so called cystbusters" Now you got people on here taking all this crazy stuff based on his research when A)he has no knowledge about what your taking for biofilms/cyst form, and whether they work or not, and B)he wont even admit that he has proven that what you are taking all that crazy stuff for even exists.I am just trying to tell people to be careful about what and why they are putting this stuff in their bodies when there is no good science to back up whether it works or not.
-------------------- nn Posts: 103 | From Northen Neck Va | Registered: Jun 2012
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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
nnecker and Judy,
Chronic lyme is real. Scientist have treated dogs that were infected with lyme, the dogs would get well, the antibiotics were withdrawn, and the dogs gradually got sick again. When the dogs were sacrificed and autopsies were done, lyme was found in their bodies.
Also, I have been bitten four times with Lyme, and three of the four rashes return, at the bite site, when I stop treatment. Yes, and the rash gets large and spreads. (I am hoping the more aggressive treatment I am taking when kick it in the butt.)
So, whether it is cysts, or biofilms, or just a very smart bug that knows how to survive no matter what, it is very hard to kill.
You don't want Chronic Lyme. It can be a nightmare.
And I was treated at the time of the bite with the usual 100 mg. doxy twice per day for 10 to 28 days.
A good read on all this is "Cure Unknown" by Pamela Weintraub. There is a website for this, and I think you can read the book on the website.
Posts: 1358 | From Midwest | Registered: Apr 2009
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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
And, believe me I don't like taking antibiotics, have always had more faith in the natural approach. But, I have decided to do all that I can to get this under control.
If the bugger can't be totally killed, one of the keys to controlling it seems to be keeping inflammation down, and keep the body's Ph balanced.
Posts: 1358 | From Midwest | Registered: Apr 2009
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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
Natural cyst busters
(If using GSE, start really slow, since the nasal spray made you ill.)
I read some where that burbur is good.
You might check out www.buhnerhealinglyme.com He has a good approach to treating lyme. You can even email him, and he will answer you for free. Sometimes he answers immediately, sometimes you might have to wait awhile if he is traveling.
Also, the Cowden protocal addresses lyme and I believe uses cyst busting herbs.
Hopefully the dose you used has worked. Sometimes, that's all people need when first bitten, but for some of us it wasn't enough. It wasn't for me.
Posts: 1358 | From Midwest | Registered: Apr 2009
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posted
I see that Buhners Herbs is having a red tag sale on cyst busters and bio film dissolvers this week.I cant wait to get mine in the mail so I can start doing some busting and dissolving as soon as possible.
-------------------- nn Posts: 103 | From Northen Neck Va | Registered: Jun 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- nnecker,
Buhner does not sell any supplements. Never has and probably never will.
Since I know Buhner has no "Red Tag Sale" might your post be sarcasm? -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Yes it was sarcasm.I looked at the link given and there was a coupon there that says Buhner,s herbs,10 percent off all Lyme herbs.If I mistook that it was him selling it,then I apologize for it.
-------------------- nn Posts: 103 | From Northen Neck Va | Registered: Jun 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- That's good to know.
1st Chinese Herbs is letting us know (with a note on Buhner's site not just about herbs he suggests but also other herbs that various LL NDs suggest for lyme) that they are helping us out a bit.
1st Chinese Herbs is an excellent company supplying top quality herbs at fair prices.
A ten percent discount is very nice of them. Use "lyme" as the discount code at checkout. Not sure of any time limit but talk to a customer service person for clarification as time moves along.
1st Chinese Herbs -
Posts: 48021 | From Tree House | Registered: Jul 2007
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
Judie, I think it would behoove you to see an LLMD to evaluate whether 30 days kicked your Lyme out and to consider testing for co-infections, which as I understand it can be one of the major reasons that early treatment can fail.
But of course, the issue is getting into one quickly enough. One idea is to find an integrative medicine doctor who, while not an LLMD, is Lyme-friendly and can help you in the interim. I did that early on and still see her - she has been a great supplement to the care I get from an LLMD.
You also might be able to convince an urgent care doctor to give you another 30 days. Are there any symptoms at all you could point to? I have found they are freer with the abx than primary docs.
Posts: 1737 | From Virginia | Registered: Aug 2011
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- Nice info! I think the main reason they give doxy first is in case the patient also has RMSF or ehrlichia. Those can be deadly if not treated in a timely fashion.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Grapefruit seed extract is a powerful in vitro agent against motile and cystic forms of Borrelia burgdorferi sensu lato.
Brorson O, Brorson SH.
Abstract not at this site. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I could not (and copyright law does prevent this), 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. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- NOT about Borrelia, however, this may be of interest. An ILADS researcher would be best to discuss the definition of "cysticidal" in this context and if that meshes with the context for Borrelia b.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Your LLMD should be directing your individualized treatment.
It's great to have the web to learn more but you don't have to figure it all out yourself. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
Wow, thanks for all the info. It looks like I have a lot of reading to do.
Posts: 2839 | From California | Registered: Jul 2012
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posted
Keebler,Dr Barthold talks about non- cultlvable spirochetes from tissue.What ever that is.But my question is, if you can't culture these cysts in living tissue,how do you know that a cystbusting drug is killing them?If Dr Barthold is saying non-cultlvable spirochetes are cysts(which I don't know)then it is obvious that what happens in the test tube dose not always happen in living tissue based on Dr Brorson's study. http://www.ncbi.nlm.nih.gov/pubmed/9266264 in which he cultured cysts in a non serum medium and then cultured them back to mobile spirochetes in serum medium.If Dr Barthold is saying you can't do that in living tissue, then it would not be far fetched to say that all the studies on cystbusting drugs in the test tube might not work in living tissue either.In any case,LLMD,s,or anybody, dose not know for sure if these cystbusting drugs work or not.
-------------------- nn Posts: 103 | From Northen Neck Va | Registered: Jun 2012
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Necker said.. "... if you can't culture these cysts in living tissue,how do you know that a cystbusting drug is killing them?"
As the science evolves questions like this will hopefully be answered using the best tools we have available.
In the meantime, if it feels good, do it. Or not do it, and get worse perhaps?
Someone had to take the chance and eat that first tomato that was thought for years by everyone to be poisonous, or drink that first sip of cow's milk- now that took courage- or eat that first raw clam. Did they not drink the cow's milk because they didn't know using scientific proof that it contained calcium?
It is the patient's choice to be able to work up a protocol for themselves based on their doctor's best judgement and the best scientific literature available.
Example- we just had a Mars landing and many things could have gone wrong. Do we NOT have a Mars landing because we don't already know what is there or what will happen? No.
Bottom line...
We must explore and research more to find all the answers available in the Universe.
Or we could do what the IDSA would probably like for us to do, which is sit in the dark dungeon, suffer immensely and do nothing to help ourselves until they can prove or not prove a reasonable theory.
Life, in my opinion, is too short to wait on them to finally see the light and/or get the millions of dollars they think are needed to do their own limited research based on their own faulty testing, and then published in their own favorite journals.
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