I have lots of frustration with local Dr's because I am not a CDC reportable positive case of Lyme.
I am currently taking a break from abx because of GI/yeast issues. I have been off Bicillin for 4 weeks, Omnicef for 1 wk.
I had been on Bicillin for 7 months, omnicef for 4 months.
I know that if you test after a few weeks of being off the abx, you are more likely to get a positive result.
When would you suggest I retest?
Is there any supplements that would help bring out a positive result?
Are there any supplements I should be avoiding during this timeframe?
Posted by Keebler (Member # 12673) on :
- With symptoms, history, and that 23 (IGM), I don't think you need another lyme test; You need an educated doctor.
Even if you were a reportable CDC positive, the regular doctors would still not able to treat you - or would stop short and not even consider coinfections.
It's important to find an ILADS-educated LLMD or LL ND who is VERY lyme literate and literate in all the other infections and issues for anyone with chronic tick-borne infections.
The learning curve is very steep and the doctors who think they can (or should) just go by the CDC test criteria and the recipe book approach will do you a huge disservice.
There is a better test in the works now but you may not need another test at all. You need a doctor who knows what she or he is doing - and that includes treating your gut.
A good LLMD or LL ND will have all that detail for you. I could add many things about that but it would be disjointed. Others will surely add suggestions for gut repair.
Also, have you considered a RIFE machine? For many who can't tolerate abx, a rife machine has been of help.
For the gut, though, right now, Google:
DGL, chewable.
Anti-candida diet (rather than "grains" - seeds like Quinoa & Millet - and grasses like Wild Rice & BLACK Rice can be helpful, in moderation and they are gluten-free).
NYSTATIN and lots of PROBIOTICS (take hours apart and away from abx, too).
Good luck. -
Posted by Keebler (Member # 12673) on :
- I assume your doctor(s) have you on a GLUTEN-FREE Diet. But, just wanted to be sure. THAT, alone, can help the gut heal.
Most LLMDs strongly urge their patients to be gluten-free, even if they are not celiac or technically gluten sensitive. Gluten can really wreak the gut (and much more) for those with lyme.
Although each of the links below have the same title, each one is important to read as there may be something that the others missed. Even a mere TRACE of gluten can cause a train wreck. These links may help ensure that your efforts are successful:
5) Hidden Sources Of Gluten -
Posted by Laura_W (Member # 31491) on :
Keebler, Im trying on the diet. Yes I am taking probiotics. No I am not on Nystatin, Dr wasn't willing to prescribe it.
I'm so irritated with dr's right now its not funny!!!!
I'm a single mom of 2 kids. I can't work. I'm on medicaid. No family with money. My dr is only lyme friendly, he beleives in chronic lyme, and is trying to treat me. But, is not literate. Knows nothing of co-infections.
And no other Dr in the state will take my insurance according to MLDA, that is willing to treat chronic Lyme.
Posted by Lymetoo (Member # 743) on :
I think she is wanting less grief from regular doctors. But another test won't likely convince them either.
I would wait two weeks, then test. Do the blood draw on a Mon or Tues.
test #188 and 189
Posted by Laura_W (Member # 31491) on :
Oh, and part of the reason I'd like to retest. And hope to get CDC positive results.... is so that I can prove a point to the neurologist who basically thinks I'm wacko, and doesn't see me anymore.
He was the one who initially tested me for lyme. But said I didn't have it, because I wasn't CDC positive. I had to diagnose myself.
I'd like to be able to prove to him that he was wrong, and that he needs to educate himself more. Maybe just maybe make a difference for someone else some day.
Posted by Keebler (Member # 12673) on :
- There may be a low cost naturopathic or acupuncture clinic in your area. A N.D. or a L.Ac. can prescribe NYSTATIN.
If you can't easily find one, find the HIV groups in your area and call them, asking about low-cost or sliding fee naturopathic or acupuncture clinics.
Any one who treats HIV patients would be more likely to have the temperament to help lyme patients, though if you could find an ILADS-educated LL ND, that would be best. And some do have a sliding fee scale or maybe just a consult session for key issues.
I'm so sorry that your doctor in also candida ignorant.
More lyme tests can be hundreds of dollars. I'd save money for testing coinfections or for treatment from a doctor more educated in these matters.
A new lyme test will not make your current doctor any more intelligent. -
[ 10-31-2011, 04:55 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
�Sliding Fee� is the key term that (hopefully) will find you some good care, at least for gut support. After that, ask if they know of anyone who has experience treating chronic lyme.
In some states, Medicaid (NOT medicare) may cover some treatment by N.D.s or L.Ac.s for specific diagnoses -- PAIN being the most common one. Depression might also be another.
You might call both the N.D. and the L.Ac. state organization / administration office and ask about this. Their office staff should know. -
Posted by Keebler (Member # 12673) on :
- Laura,
I just saw your note about wanting to prove to the neurologist. Well, please pardon my roughness here but, until you are really much better, it's best just to let that go.
Even if you were to have a glowing positive test (which is as hard as getting a winning lottery ticket due to the CDC's stacking the deck against truth) . . . well, even then, he would say it's no big deal.
The professional neurology group for the U.S. has decided to walk hand-in-hand with the IDSA and CDC on matters of lyme. I don't see that changing anytime soon.
And, yes, it is wrong. Still, as hard as it is, and I know this has been hard for me, too - it will not serve you to try to prove anything to any doctor who is ignorant. It will just tear you down all the more.
[By the way, I've tried and tried. I use to never believe in the word "impossible" and thought that if I had professional articles, etc. and my positive test, that several different neurologists (and rheumatologists) who discounted me -
well, I thought it might matter to them. Nope, they still said I must be fantasizing all this and that there is no lyme in my state, etc.
This sort of thing happens all the time for lyme.
Don't set yourself up for more abuse. It IS abuse, by the way. And I do wonder if some of them don't have pathological abusive traits to so ignore all the real research and pleas for help. Stay away from abusers of all kinds.]
You can warn others away from those you've see who are inadequate (through your local support group). . . but it's probably best to proceed on a positive path toward your healing now. That will take all the energy you can muster.
It will take all you have to just walk in truth and power. Don't try to win over others right now. Just stay strong and sturdy on your path.
Like that (lime) green line for Fidelity financial plan with ads on TV during evening news programs. Stay on the green line. Picture it. It can be your friend, so to speak.
Good luck. -
Posted by Keebler (Member # 12673) on :
- OLE (Olive Leaf Extract) is a supplement that can really help the gut in many ways. It also has many good properties that help lyme patients. If you get this, start with just one a day, maybe first taking with lunch.
OLE can produce a bit of a herx. That is why staring slow is important. THIS really helped my gut issues tremendously (the Seagate brand is what I used).
You should also know that if your GP writes a letter suggesting certain supplements are important for you, the cost can count toward medical expenses and help with Food Stamp allotment. It's not a dollar to dollar trade at all, but it helps.
Fees for a N.D. or L.Ac. would also qualify if your G.P. says are necessary for your well-being.
Now, states may vary by law here but I'd ask at the N.D. and L.Ac. organizations first about this.
Also, do try to keep your GP on good terms as his help in some things is needed. If he is lyme friendly, he may welcome your finding someone with more experience and then just staying in the loop.
In the meantime: OLE --------------------------------
In a Q & A session this past weekend that ILADS streamed during their annual conference,
*** I heard Dr. B say that a person should be off ALL antibiotics for 4 full weeks prior to the test. ***
I assume that would also apply to being off all herbal supplements as well but you'd want to check. Non-herbal supplement may or may not be fine. -
Posted by Kudzuslipper (Member # 31915) on :
Oh gosh. I feel for you. Just once in my life I would like a crystal clear diagnosis to anything (well, knock on wood! I guess I don't want a really scary dx)
But that being said, an open minded PCP is anawesome resource. I assume they are the one willing to give you abx scripts? Also, when/if you do go to a llmd or llnd, if you have an ongoing relationship, they can help explain things and give their stamp of safety approval on anything the specialists might subscribe.
I am not sure the risk is worth it, but I have read that prednisone... Will allow the buggers to flourish.
Posted by Laura_W (Member # 31491) on :
Kudzuslipper.... I WILL NEVER TAKE ANY STERIODS AGAIN. A dose of steriods is what brought on many of my more symptoms. But thanks for your input.
Lymetoo... yes, I meant the normal dr's.
Keebler, wow! Thank you for all of your help!!
The dr that is treating my lyme has never discussed diet or supplements, I have only learned about them through this site.
OLE is something that I have definetly wondered about taking. I am currently taking GSE to help with the yeast.
I looked up the DGL chewable. Is there a brand that is better? Better tasting?
My bloating has finally decreased a bit. Today I woke up with 2 less inches on my waist!!!
I'm 5ft 5in tall 155lbs.... and I had a 41 inch waist because of the bloating. (just figured I'd give you a visual of my issue)
Also, Keebler thank you for finding specific sites for my state. Wow you really went above and beyond for me! thank you so much! I will look at the sites tomorrow.
I'm exhausted from taking the kids trick or treating.
thank you everyone for your responses!
Posted by Lymetoo (Member # 743) on :
I heard on the news today that licorice can drop your potassium levels significantly.
Posted by Laura_W (Member # 31491) on :
The dr I'm seeing is considered an LLMD, by the MLDA. However, he truly is only a nice man, with a big heart, who is trying to do what he can to help. He isn't actually literate. I sought him out as an LLMD, but found him to be more lyme aware than literate.
I am currently looking for a primary physician (I have a post about that struggle in general support...lol)
And of course, I'd love to find a true LLMD, as well as any other specialist that truly understand this disease. And of course, there is the money/insurance part that goes with that.
Thank you all for your input Posted by Laura_W (Member # 31491) on :
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