I am torn on what to do so I will ask for advice. I do have an appt with an LLMD in 6 weeks for suspected Lyme disease.
I also have been under the care of my family doc for 'anxiety' and just went for a follow up appt. My first since November.
A little back ground.., In November my MD did test for Lyme and I am equiv. with ELISA but neg with western blot-only band 41igm reactive. So doc said I was negative.
After talking and getting advice here, I made appt with LLMD.
Back to my question, as I said I went for a follow up regarding stress and anxiety last week. I brought up my test results and my Doctor said she has worked with infectious disease doctors and is willing to treat me based on my sx's & the epidemic area I live in.
Although she will only treat for a month, it will take me up to my appt with the LLMD than I can continue with them.
I told her I had an appt and would wait but now I am wondering if I should just start with my family doc. Is there any reason why that wouldn't be a good idea?
Obviously I am just learning about all of this so please don't think I'm 'stupid' for asking! I just want to do the right thing.
My family doc said what's important is getting me healthy -I love her!- so I know I can call her today and she would call in a script. All your opinions are appreciated!
Thanks Soooo much! Peyjad
[ 01-04-2010, 02:28 PM: Message edited by: Peyjad ]
Posts: 93 | From PA | Registered: Nov 2009
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posted
IMO I would take the abx from the PCP until you get into the LLMD. You can also use herbs/supplements to help while you wait.
Posts: 476 | From Columbus, Ohio | Registered: Aug 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Ditto.
Be sure to take probiotics and I would also take Olive Leaf Extract as that has helped me ward off candida (systemic yeast) infections from abx (antibiotics). Probiotics are great but have never been enough for me.
Olive Leaf extract is a great support for lyme treatment and it also has some application in the use of malaria, so it MAY be helpful if babesia is involved (as babesia is similar to malaria in some ways).
LIVER SUPPORT, too, is absolutely essential before you begin antibiotics so as to protect your liver not just from more lyme toxins during die-off but also protect your liver from the abx while they can do their job.
Milk Thistle is the most common liver support/protection suggested by LLMDs
Can you get Igenex tests first for coinfections?
Do you have the list of treatment protocols - and support supplement lists, too? Burrascano's is the most well know but there are a few others that, while generally they suggest the same thing, there are few differences to consider.
Green Tea is great to add as it will help the abx work better. You can consider allicin (garlic), too.
Magnesium and fish oil can help decrease the "herx" die-off effect that can increase symptoms. Water, rest, good food, etc.
Good luck - and Take care. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I took Doxycycline for 6 weeks until I got to my 1st LLMD apt. It also might be advisable to abstain from all sugar, alchohol, caffeine, and carbs/gluten, if you don't already. I too have the weird anxiety issues. Do you do deep breathing exercises? Working with non lyme literate docs is super frustrating even if they don't outright mock you! I say take doxy if you can get it but I'm not sure about other abxs. Not all are right for lyme.
Posts: 702 | From North Eastern USA | Registered: Dec 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
I have taken this alone at times and also during treatment with doxycycline. A LLMD who specializes in Chinese Medicine said it's okay to take together.
Olive Leaf formula - the scute in it can also help clear out toxins:
My ND (naturopathic doctor) recommended MYROLEA B. Most naturopathic doctors and acupuncturists know about the Seven Forest formulas.
Myrolea-B (White Tiger) is a simple formulation of highly concentrated extracts from four Chinese herbs and one Western herb.
The Chinese herbs include forsythia and lonicera, two of the key ingredients of Ilex 15 (and the main antiviral ingredients of Yin Qiao Jie Du Pian), thus boosting the dosage of these essential ingredients.
Myrolea-B also contains the antiviral agents scute (huangqin) and terminalia (hezi) - [ note first link above for terminalia]
The Western herb in this formulation is olive leaf, which is one of the primary anti-viral herbs derived from the European tradition.
SHUANGHUANGLIAN: Potent Anti-Infection Combination of Lonicera, Forsythia, and Scute
- by Subhuti Dharmananda, Ph.D., Director, Institute for Traditional Medicine - 2003
Shuanghuanglian (SHL for short) is a modern formula that was devised in the 1960s to treat a variety of infections. It is comprised of the alcohol-water extracts of three herbs: lonicera (shuanghua, often called jinyinhua), scute (huangqin), and forsythia (lianqiao). . . .
. . . One of the early preparations of the SHL was a tablet made of equal proportions of the extracts of each herb. This was used to treat leptospirosis, a disorder caused by a spirochete bacteria, related to the organism that causes Lyme disease.
Leptospirosis causes initial symptoms of fever and chills, headache, and muscle ache (especially in the shoulders); these are consistent with "flu-like" symptoms described for the onset of many acute infections.
In a 1971 report, the formula was described as being made in 500 mg tablets derived from 3.7 grams of the crude herbs, and being administered in doses of 10-15 tablets (thus, equivalent to the extract of 37-55 grams of herbs) every 6 hours (1), a very high dosage.
. . . Recently, Shuanghuanglian has been applied successfully to treatment of Coxsackie B3,
. . . The general indications for SHL . . . are "relieving the exterior syndrome, clearing away heat and toxic material," and its indications are "treatment of fever, cough, and sore throat that arise from wind-heat syndrome."
It is said to have "a good action in treating upper respiratory tract infection, tonsillitis, laryngopharyngitis, pneumonia, acute enteritis, viral dysentery, etc., when caused by virus or bacterial infection."
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I would! It puts you six weeks ahead!
Also, band 41 does represent some kind of spirochetal bacterial infection, so no reason not to treat it.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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I have been taking since November magnesium, fish oil, daily vit, vitamin c, super b complex and calcium w/ d. I am also taking lexapro for anxiety.
I was getting bad with my anxiousness. I would worry extremely bad and that would make my symptoms worse so I chose to take the lexapro and am glad I did. I still worry sometimes but not fixate on it like I did.
I do have Dr. B's guidelines but have a few questions. I know why we can't have sugar, because of yeast and Lyme bugs love it right? Is this a permanent thing or just during abx treatment?
What about milks? I drink it in hot tea and noticed it has sugar. I was drinking 2-3 tsp (I know...eeek!) but got myself off that and now only use a small amount of stevia or nothing at all...yea for me!
I do drink caffeinated hot tea (5 or 6 cups a day...its my moms english coming out in me) but know I shouldn't, is this just because of sleep issues? Right now I still sleep perfectly fine thankfully.
Can I have a any sugar or carbs or is it literally zero grams? It's so hard to find things to eat with Zero grams in them.
Lastly, where can I get the suppliments I don't already have? Places like walmart? I do have 'probiotic formula acidophyllis' is this ok? Most of my suppliments are 'nature made'. Does brand matter?
Sorry to ask so many questions but as you all know, my mind is in a million places here trying to make sense of all this. I truly appreciate all your help!
Posts: 93 | From PA | Registered: Nov 2009
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Chuck, maybe I am mistaken, but it is my understanding that only spirochetal infections have flagellans; this is the way they move. It doesn't have to neccessarily be Lyme, there are other spirochetal bacteria besides lyme, like syphilis, etc.
Now I am confused! Gotta do some research on this.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
Many bacteria other than spirochetes have flagella, this is how they are motile.
However, I was under the impression that band 41 was only from a spirochete, whether it is Syphillis, Lyme, Leptospira or dental spirochetes and maybe a few more spirichetal organisms.
Off to do more research on band 41...
Posts: 819 | From East Coast | Registered: Apr 2009
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posted
Keebler, can you please enlighten me a little more specifically on how/amount of olive leaf to use? I just discovered a new crack in the corner of my mouth (early Candida again) and can NOT go off abx because I go into immediate kidney infection in under 48 hours. I got critically ill last time.
I'm also interested in Liver support, but can anyone tell me how to know I'm avoiding doing any harm? I'm swithing to theralac very soon. I know and understand probiotics, but don't much know how to safely use other holistic products. I know there's a better word, but I don't remember it. I keep losing my words.
Thanks for your help. Suz
-------------------- "SEVEN LYME FACTS THAT COULD HAVE SAVED ME" VISIT ME AT:
"Bacterial flagellum is not unique to spirochetes. Of ≈320 non-lyme blood samples tested around 140 (forget the exact number) tested positive for band 41. Other Bb bands showed up in the ones and twos."
I had no idea there were so many bacterial flagella. So, if I tested positive for band 41 alone, it is nonspecific to lyme. Is that correct?
When you stated that other Bb bands showed up in the ones and twos, were you referring to other Bb bacteria specific bands only having one or two cross-reactions with different bacteria?
Sounds like you have an inside track on this information. Can you please help me to understand why I have suspected lyme with these results, and only band 41 positive?
IGM 41+++ 31, 39 IND
IGG 41++ 23-25 and 39 IND
Then Dr. H. had me run the 31 epitope, and it was positive. It wasn't even positive on the 31 band, run originally three weeks before.
Any insight would be appreciated... nancy
Just started a new thread on this topic, so as not to hijack this thread.
[ 01-05-2010, 11:21 AM: Message edited by: nspiker ]
Posts: 964 | From san diego | Registered: Oct 2009
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I am getting my abx! Will start doxy tomorrow! Yea!
Could anyone answer my questions about sugar, dairy, caffiene and carbs (or point me to the literature for it) before I start the abx please?
I really appreciate all the help!
Posts: 93 | From PA | Registered: Nov 2009
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Do not do any dairy products or your probioticss within a couple of hours of taking doxy. Dairy will make the doxy less effective. You should eat when you take doxy though or it will really hurt your stomach.
I cannot do caffiene. Many lyme patients cannot do caffiene. It makes us more anxious, sends us into overdive, etc,. There is a medical explanation for this, but I can't explain it, maybe someone else will come along with that.
I actually do eat carbs and feel that carbs are necessary. Its best to eat good carbs and avoid the bad ones.
Stay away from pure sugar especially if you are prone to yeast issues.
Good luck with your treatment!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Spiker, it's Lyme.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
Peyjad, I cut out caffeine months before getting diagnosed because I noticed it made me more anxious. Even if you didn't have lyme, I think a doc would recommend cutting out the caf simply because it's a stimulant. My CNS is so overwhelmed all the time it doesn't need more stimulation. As for carbs, people seem to have different opinions here. I feel like I'll do anything to get better, what's a few carbs? If you research non-gluten/celiac diet it'll list carbs that I think are better for you such as quinoa and brown rice. The gluten feeds the yeast as does sugar. I have a hypoglycemia problem so it helps--I used to get shakey, woozy, and panicy if I didn't eat in time or if the last meal was just a sweet carb. Probiotics--I use Culturelle. You should buy it out of a refrigerator. You can order it online at Emerson Ecologics. They send it overnight in ice pack things. I take 3 a day: mid am, mid afternoon, and at bed. Sutherngrl is right. Don't take the Doxy with calcium, magnesium, zinc, etc. Read the drug info page from the pharmacy for a complete list. It also says not to lie down for a half hour after taking it and keep outof the sun. If you're lactose intolerant the dairy is a different issue. I developed an allergy to peanuts in the past month after eating them all my life so keep watch on developing sensitivities. Lastly read food labels and no alchohol. Get plenty of rest if you can. Good luck!
Posts: 702 | From North Eastern USA | Registered: Dec 2009
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
peyjad, do the doxy up until 10-14 days prior to LLMD visit, then stop doxy. This will be enough time for the lyme antibodies to be out & stirred up.
Taking the doxy for 3-4 weeks will be enough to help stir the pot.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I would call and ask LLMD if you have to stop taking antibiotics before testing. My Lyme doc tested me while taking antibiotics and thats when I had specific bands show up.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Did anyone answer your question about where to buy supplements?
My eyes went a little wacky reading all the posts, so I may have missed it.
For a quick supplement start - I like to order mine from vitacost.com - they have good prices usually.
(Not affiliated, just a happy customer.)
Hope you feel better and better!
Stay hydrated!
When I started treatment with my PCP before getting into the LLMD, I ended up dehydrated needing IV fluids - ugh, not good.
Learned the hard way that dehydration makes one feel even worse.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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posted
thanks everyone... I called my llmd to schedule appt for my children (I think I got this while preg with first child ) and mentioned family doc prescribed doxy.
They are leaving it up to me since my appt is in 6 weeks but they prefer I don't stop once I start abx sooooo I guess I'll wait for two weeks than start, gives me time to get all my supps I guess!
Anyway my son is complaint of heel, knee and shin pain and my daughter has developmental delay and sz disorder so unfortunately I think I'm on to something here.
Thanks for all the advice, don't know what I'd do without it!
Posts: 93 | From PA | Registered: Nov 2009
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