posted
Sorry to hear Judie - my thoughts and prayers are with you that this resolves quickly so you can get treatment.
Posts: 118 | From New England | Registered: Apr 2013
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posted
Oh Judie. Hang in there. This damn disease.
-------------------- "Yeah, I miss me too." Posts: 234 | From NY originally registered in 2008 | Registered: Nov 2012
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Catgirl
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posted
I am so sorry to hear this. I never got the meds early either. I remember getting bit one time (bit many times) and I became allergic to everything overnight.
Your doc is right, it needs to calm down (it will). Supporting your body right now will only help. Have you tried benadryl for the itching? It helped me when I went undiagnosed. I think zyrtec helped me too. Hang in there Judie. :)
-------------------- --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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Rumigirl
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posted
What about some Cortef to help in the situation, too? Ask your LLND about that. It can help enormously without doing damage to you that prednisone can. Prednisone is not bio-identical, and is 4 times stronger than Cortef.
Also, other adrenal support would help. And, yes, Benedryl.
sorry you are going through it.
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Keebler
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posted
- Editing after re-reading first post. Oh, I seen you also have a LLND (and prednisone was suggested - and without covering the lyme ? Is that an ILADS educated LL ND?). Sorry to hear that the expertise does not seem to be in your corner right now. Are there other choices?
Judie,
Can you see a LL ND (naturopathic doctor)? I think that would be the best thing. The LL NP is not educated in herbal medicine and there are likely some things that can help to calm this down and offer some relief, even if apart from lyme treatment herbs.
I also think a good LL ND could design an overall treatment path for you that won't leave lyme out of the picture entirely for any length of time.
A LL ND will have a better knowledge base for what you need right now, considering herbal components.
And a LLMD would likely have a better knowledge base than a LL NP - if you can find one also exceptionally well versed in support methods, of course.
Hope there is some way you can find a LL doctor better suited for your needs.
Take care -
[ 09-17-2013, 02:40 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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GOTU KOLA - Informational Links Set -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- You say you are on a "detox protocol" among other things. Sometimes (often, actually) such can be far too strong. I tend toward suggesting a balanced liver / kidney support rather than strong "detox protocols" that can push the body too much. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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What about doing everything else you can, to give your body some support during this time?
For example, do anti-inflammatories? Mangosteen juice, noni juice, grapeseed extract capsules, bromelain and papain? And the one that works really well for me, turmeric powder?
What about taking other supplements, like mg, Vit D Drops, Vit C, omega-3s, etc?
Posts: 13116 | From San Francisco | Registered: May 2006
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Judie
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posted
"Your doc is right, it needs to calm down (it will)"
Thanks Catgirl, I really needed to hear that.
I had a similar thing happen to me that happened to you. After the first infection, my body went nuts. I was reacting even worse to stuff I was typically allergic to and even reacting when I didn't have external triggers which was new and baffling (I believe it was from an internal reaction to the lyme or something like that). It was so strange and it happened right around the same time as the bulls-eye rash.
Currently, parts where the first hives appeared are clearing, but new hives are appearing in areas that were okay before. I just hope the older places that are now clearing don't flair up again.
It's like this dang thing needs to go over every inch of my body before it goes away, like an army marching around it.
I'm horribly allergic to benadryl (I go into convulsions) and zyrtec (I break out in worse rashes). No drugs or new herbs even for the hives.
As for the prednisone, I think the concern is because my neck is swelled up. I've had it almost swell shut before from a bad drug reaction. I think the swelling is so bad all over, it's gone into the zone of steroids as the suggestion, but I'm still not going to do it.
I can just use nettles and aloe, that's all I can tolerate.
I just need to ride this through. Sleep last night was awful.
Hey Robin - I already take vit C, vit D, bromelain and Omega-3s, so nothing to add there. The others suggested I'm either allergic to or haven't tried and can't risk another reaction right now.
The LLNP is also a doctor of Chinese Medicine. I was making so much progress with her til this reinfection and drug allergy happened.
She already looked at the detox protocol and what I'm on is really gentle, she was firm about not doing a heavy detox.
I'm just such a physical mess. It's just so scary when stuff so out of control happens.
My LLNP trained under 2 people who are ILADS trained. She's all I can afford right now. Money is low. She's generally pretty good though. I don't have the energy or funds to bring someone new on board.
posted
Hi Judie- I don't know if you tried this already but sitting in an apple cider vinegar bath can sometimes really, really help hives.
Just be careful because of your sensitivities (unless you know you are able to tolerate it well) and try a little spot of your skin to see if it helps the itching and inflammation. Also see if you can take apple cider vinegar in water internally.
I'm so sorry you are having such a hard time. Posts: 428 | From Midwest | Registered: Dec 2012
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Judie
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posted
"I think you need to begin your search for a good Rife machine."
Hey Lymetoo - I was just thinking about that. I have a friend who uses one for her Lyme, I think it's time to give her a call.
She live pretty far and I probably won't be able to see her til sometime next week.
Hey Daynise - Thanks for your good wishes. I just started putting apple cider vinegar on my salads. Yum!
Posts: 2839 | From California | Registered: Jul 2012
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Keebler
Honored Contributor (25K+ posts)
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posted
- With more detail added, I do agree that your doctor does sound well educated for your case. And, even the best doctor does not have all the magic keys, so to speak.
I see now with the concern about throat swelling the suggestion of prednisone as that would certainly put this into the emergency-only use category.
When you see your friend, if you will be where her rife machine is, could you use it for the frequency of 10K (10,000). That is not lyme specific but just a calming frequency to soothe inflammation.
Topic: RIFE Machine - Reference LINKS -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Judie
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posted
Thank you Keebler! That's really helpful.
I remembered that my friend had a list of frequencies posted next to the machine for infections, but nothing for calming was listed.
Posts: 2839 | From California | Registered: Jul 2012
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Keebler
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posted
- 10K is "required" "exit frequency" for every single rife session - to calm inflammation. It can be used alone, and every day if it helps.
Good luck to you. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Exactly. I use it at the end of every session. Your friend probably does too.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Annie C
Frequent Contributor (1K+ posts)
Member # 14
posted
I've been being treated for Lyme for 14 years. I moved to a health nut town. All homeopathic for the most part. Not me the town. And after 3 psych wards with on two years. Last March I felt like I might have turned the corner.
And bam a tick bite in March and 2 more on the same day June 17. One had the classic rash and I have pictures of it and each day I never know what's going to happen.
Don't let fear get you. But I'm not one to say that. I'm in fear every day. Major panic and anxiety and vertigo and headaches. And the rash with the Abx.
I think all 30,000 plus members need to rally together all in one place. Maybe in the parking lot of the CDC. In fact I've never seen 1 of them on TV. All the Dr shows and news shows say """"Today The CDC Says Blah Blah Blah Blah"""""!!!!!!
Safety In numbers is what I remember.
Take care. We are all blessed to have such a wonderful place to go online here. And Each and Every One of Us Understand.
-------------------- May God Bless you every day. And Never say never and do not give up no matter what. We need you to help others. Posts: 1288 | From Tetons Wyoming | Registered: Oct 2000
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Judie
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posted
Hey Annie,
Wow! I visited your town last year! I think we live in mirror towns. LOL
I love the Dragon Lady tea I got there.
Gosh, I'm sooooo sorry you're going through a similar thing.
Yes, this all seems very scary. I'm doing my best, but it's difficult.
D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
No suggestions as you already have received a lot of good advice. Just wanted to assure you that this will pass and you will beat the Lyme back again, as you have before.
Knowing what works for you concerning treatment is half the battle. You will get through this and will have better days ahead. Set backs are a normal part of the process and will be over come.
Best regards.
Dan
Posts: 2919 | From Minnesota | Registered: Aug 2006
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Judie
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posted
Thanks Dan! It's good to be reminded that setbacks are part of the process.
Posts: 2839 | From California | Registered: Jul 2012
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Judie
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posted
I spoke to my friend who has a Rife machine and it turns out she has 2 machines.
She's going to loan me one (come over, set it up and everything).
While I'm thrilled, I'm also in dread.
My husband HATES stuff like homeopathy and Rife machines. He believes they're scams.
Any suggestions on how to tell my husband about this????
I have no hope in convincing him about results, I won't even try. I just need some way to communicate that it's worth it for me to do (and it's free, the price tag will appeal to him).
He does his best to be understanding, but I know this is outside the box for him.
Posts: 2839 | From California | Registered: Jul 2012
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posted
Just DO IT... and let him wonder. Nothing ventured, nothing gained.
Tell him there is plenty of science when it comes to Rife.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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GretaM
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posted
I find the people who are well most of the time are the ones who are the most skeptical.
Tell him, the price is right. He can see how much you suffer with hives, surely he wants you to be better.
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D Bergy
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posted
You really can't convince anyone that something of this nature is effective. They have to come about it in there own way.
I was pretty convinced frequency treatments were wishful thinking, but I had enough curiosity to research it exhaustively.
Royal Rife had so many other solid accomplishments other than his frequency method, it was difficult to believe that he had this one accomplishment that was a complete fraud.
He designed an optical microscope that could see viruses.
He was an accomplished marksman.
He worked on radar systems for the Navy.
He was employed by Henry Timken the owner of Timkin bearing company which still operates today. He developed an X-Ray system that dramatically reduced faulty bearings from the final product.
Rife designed and built a 2,700 HP motor for Henry Timkens and piloted the boat that set a 100 mile speed record averaging 87 miles an hour. That may not seem like a real big deal but he built the motor in 1915. I do not know of any motor of that vintage that could produce amything close to that amount of horse power. As a result of his being so far ahead of everyone else in this he held the record until 1975.
Does he sound like a scammer? How do you hold a sixty year record for anything unless you are way ahead of your time?
These are some of the things that told me, this guy knew his stuff.
There are lots of phoney stuff associated with his name by people who try cash in on his work, but Rife himself never made a claim he could not back up.
Dan
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Judie
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posted
Thanks so much for your feedback.
That's really great info about Rife.
I'm not even going to try to change my husband's mind (it would be a battle not worth it for either of us).
"The price is right" sounds good and my friend is doing something generous is good too. I don't think my husband can get mad at those things.
I just have to find a place for the machine. Maybe have her set it up when he's not around.
Greta, that's so true. My husband is loving, but very opinionated. He's very healthy and never goes to the doc. I know a lot this is just beyond him, but he does want the best for me. Thanks for the reminder.
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Keebler
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posted
- Be sure to get Rosner's book first. Hope this works out for you. Book link is here:
LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too. -
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randibear
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posted
Hummppp...is your husband related to mine???
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Judie
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posted
"Hummppp...is your husband related to mine???"
Hey Randibear - Sometimes I see your posts and I'm convinced that our husbands are part of the same family.
I'm just waiting to run into you at a reunion!
Keebler - As always, thanks for your wealth of knowledge.
Posts: 2839 | From California | Registered: Jul 2012
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ukcarry
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posted
Good luck, Judie. I had terrible hives after an antibiotic trio combo containing Rifampin and Tinidazole (also Azithro, but I think I can tolerate that). Mine were fierce, but did die down faster than yours seem to be: I had a bowl full of a water and Apple cider vonegar mix and constantly covered myself with it in the short-term.
Good luck and hope you will find the rifing helpful.
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Catgirl
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posted
Judie, this might help: Pantethine works for all cases where prednesone is normally prescribed, and much safer (below).
-------------------- --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
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posted
Update - Fresh aloe is saving me from going totally bonkers with discomfort. I'm putting a leaf in the fridge over night to use. The poor plant has barely any leaves left.
My legs are still very swollen with pain but the skin is barely weeping today with is huge.
ukcarry - Oh dear. Yes, this rash in unbelievable. It grew so fast. It's still going strong, but at least some of the burning parts aren't burning anymore.
When I slept last night, I wasn't woken up in the middle of the night with my neck having burning/itchy inflammation which is a big improvement.
It's like a fever burning through my skin, maybe it'll help fight off the this new Lyme infection (thinking on the bright side, I have no idea if that makes sense).
Catgirl - The top link doesn't open for me, but I think I found the site.
Have you taken pantethine before?
I started taking B5 a month ago. It's suppose to feed the adrenals and my test showed low on that.
Pantethine actually sounds better than B5 from the quick search I did on google.
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Catgirl
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Catgirl
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posted
For some reason when I copy and paste it drops the lower case dash - in between the spaces.
Oh well, this is from the link above:
...
And from another source comes another connection -- from Dr. Robert Atkins' newsletter: Dr. Atkins is writing about Pantethine which he prescribes to his Crohn's Disease and Colitis patients, with acknowledgement to Dr. Melvin Werbach for Dr. Werbach's study that demonstrated that people with colitis have markedly decreased Coenzyme A activity if the mucosal surface of their colons, even when the blood levels of pantothenic acid are normal. Dr. Atkins concluded, based on his success with these patients of his, that Pantethine bypasses the block in converting Vitamin B5 (Pantothenic Acid) to Coenzyme A. But also, that Pantethine is a growth factor for lactobacillus bulgaricus and bifidobacterium that we know help control yeast overgrowth (and Dr. Cooter also speaks of it in his book). Candida, according to antibody studies done at the Atkins Center, is involved in more than 80 percent of all cases of Crohn's and Colitis.
And for autoimmune problems, Dr. Atkins states, " For all conditions that a doctor might prescribe prednisone -- allergies, asthma, rheumatoid arthritis, psoriasis, lupus, and olther autoimmune diseases, pantethine can be safely, effectively substituted. I routinely use it for all of those conditions on hundreds of my patients, and it's valuable in weaning them off steroidal drugs, or certainly in allowing a lower dose....
By upping body levels of a body enzyme, pantethine counteracts brain fog, certain allergic sensitivities, and some consequences of alcoholism. (And here it is --) ... In people with candidiasis, the enzyme fights off a toxic byproduct called acetaldehyde, which is thought to cause brain fog, often-suffered but rarely diagnosed.... Acetaldehyde also is suspected of being responsible for some symptoms of alcoholism, including alcoholic heart muscle disease. The pantethine-stimulated enzyme also detoxifies formaldehyde, an all too frequent offender for chemically sensitive individuals."
In summary, Dr. Atkins is saying that Pantethine, without toxic consequences, can reduce cholesterol, counuteract oxidation, stimulate the growth of friendly bacteria, and fight allergies, inflammation, autoimmune disruptions, and alcoholism.
In case you wondered, Dr. Cooter and Dr. Schmtt suggest 300 micrograms of Molybdenum in three divided doses per day, and further suggests staying on it for at least 4 months.. Dr. Atkins suggests 450 to 900 miligrams daily of Pantethine with an equal amount of Pantethenic Acid.
-------------------- --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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Kudzuslipper
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posted
Judie, I am so sorry for you. I have had rashes like you describe for 25 years. Knock on wood,I have had only one bad one since first being on abx for Lyme 3 years ago. But I thought I would share the things that helped most over the years.
many years ago when i was treated for a lyme before they told me it wasn't really positive (makes me want to scream) I discovered that doxycycline made the rashes disappear in days... Prednisone would suppress it and make it move to another location like you say... Benedryl made it worse ( But doxy cured the rash (now of course I wonder if it made it revert to cyst form). But otherwise these rashes would morph and spread for two months. I don't know if your doc might let you try doxy. It is a powerful ant inflammatory that works in the skin. (But do stay out of the sun.)
For relief... Gold bond powder. For me a hot shower (may not be good for you) followed by the powder would keep from scratching myself to pieces for 4 hrs.
A great antihistamine is periactin (prescription)
Once during my Lyme treatment, I went against everyone's advice and accepted a cortisone shot in my foot. Next day... I had one of these rashes spread instantly all over my body I was desperate! This was the first rash in a year... And it was a long weekend. I went to whole foods and searched for anything that would help... I came home with a book on homeopathy and two Boiron viles.... One of Urtica Urens. The other Apis. The book said take Urtica if no relief in 15 minutes take Apis. I don't know that I followed the instructions exactly.... But I continued alternating both. Within two days the rash was gone! It certainly can't hurt. Since then whenever I get a tiny spec that feels like it could become a rash, I take the 5 pellets of Urtica and I have not had a full blown rash since doing this. I know it sounds crazy but it works for me.
Catgirl, that pantethine sounds amazing.... I
[ 09-20-2013, 10:44 PM: Message edited by: Kudzuslipper ]
Posts: 1728 | From USA | Registered: May 2011
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Judie
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posted
Okay, crazy red rashes are now not crazy red and burning, just plain ol'rashes now.
BUT
Now I'm feeling feverish and chilly at the same time. I'm starting to sweat and I'm soooooo dizzy.
I don't know if this is Lyme, babesia or what.
Any ideas?
I didn't have babesia before and don't know if this is that or the freakin' Lyme coming back.
I've been having nightmares and feel like crying all the time.
Posts: 2839 | From California | Registered: Jul 2012
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Judie
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posted
I had really bad night sweats last night. My neck and armpit hurt like crazy (I have some swollen lymph nodes) and I generally feel under the weather.
I have a headache and my ears and nose feel stuffed.
Does anyone know if this is a coinfection or just Lyme?
Posts: 2839 | From California | Registered: Jul 2012
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posted
My first thoughts are that it sounds like you might be detoxing (but still fighting) from the rash- since the intensity is down, your lymphs are swollen/hurting, and you are sweating.
An epsom salt bath might help draw some of that out faster if you can tolerate it
On the dizzyness- you could be dehydrated since your body's been fighting so hard for so long- lemon, real salt, stevia in water helps me with dehydration and I've seen other people say that coconut water can help that too
I hope you feel better soon Posts: 428 | From Midwest | Registered: Dec 2012
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