I went through a huge denial stage yesterday after seeing my acupuncturist and her telling me everyone she knows on antibiotics for lyme disease hasn't been cured, and that she was against the antibiotics.
She told me some patients of hers have "decided they don't have lyme disease." She was very polite and careful with me. I had to pry out the information. She is a kind doctor. But I wanted her opinion.
Now, I respect her, have been seeing her for years, and she travels the world helping people. I know she doesn't know much about the disease at all. But, regardless, it shook me up a bit.
Went home convinced I was wrong and the clinical diagnosis for Babs was wrong too. I was taking medicine for nothing. It had to be something else.
Need your support.
Here are my symptoms: IBS since 1983 (when I lived in Mass.) Lactose intollerance. Heart palps. Miscarriages/preeclampsia, son on the autistic spectrum PMS Fibromyaliga (diagnosis) Generalized Anxiety Racing heart with excercise dyslexia (did I spell that right?) Word retrieval problems Right eye twitch Blurry vision in left eye (had to get glasses) Shortness of breath Anemic in June (iron pills helped) Brain Fog Loss of initiative Easily irritated, mood swings, etc. Muscle twitches, spasms, etc. Stinging, burning, stabbing pains in back, shoulders & neck Sensitivity to light, noise, smells, touch Chemical sensitivity Vivid nightmares Gluten triggers pain Clumsiness, drop things, run over curbs (fun!) Loss of libido Tingling inside nose cavity Stiffness upon waking Cold hands and feet Sensitive to temperature changes (comfortable around 70 in winter, 75 in summer) Worse symptoms in the fall & early winter Pins and needles in hands/feet at times Weight gain Short term memory issues Generalized weakness Hand tremors (rarely) Tired by noon each day
I know, I know.
I still think maybe it could be something else. I know that sounds crazy.
Maybe I don't want it to be lyme disease and I would rather the pain I experience on the meds be a reaction to the medication rather than hexing. How can I even tell the difference?
I am being treated for Babs (Zithro/Mepron) At first Mepron wasn't too bad, but now I hate the Mepron; I feel like I have the flu and chest pain the entire time I'm on it. I'm down to 1/4 teaspoon to tolerate the pain. Zithro makes me achy and tired.
I did the Western Blot at Igenex - get results Friday - but I know they don't mean much if negative. The doctor did a bunch of other tests too, for parasites, lupus, etc.
Can you offer some of your experiences when you first found out you "might" have lyme disease and coinfections?
At first I was happy; there was finally a cure for my fibromyalgia, that was how I felt until I researched, only to discover there was no magic cure.
I'm reading all I can online and in books. Many of the threads at lymenet have benefited me greatly. THANK YOU
I had to retire 7 years ago from Fibromyalgia/CFS; I used to be a school teacher. Now, I am raising three boys (with my husband) while taking the med's, and it is sooo hard. I couldn't do anything today after noon, but sit and read. (but I am thankful I can read)
I'm on a low glycemic, blood type A diet. That's extremely hard too. Mourning my foods. No sugar, no corn, no potatoe, etc. I used to think gluten-free was hard. I am also a vegetarian (eat fish and eggs) & now I read about Marshall protocol and mercury toxins and think, great, what am I going to eat.
Doing lots of supplements, detox, etc.
Thank you for reading all of this. Any comments, connections, appreciated. I wish there was a local support group in my area.
Sincerely, Marcelle
[ 28. November 2007, 12:37 PM: Message edited by: marcelle ]
Posted by Keebler (Member # 12673) on :
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It takes courage to face this. Many doctors - of many types - don't have the courage or the energy for this. We have to, though.
If you got the tests from Igenex and a doctor put you on Mepron, the doctor most likely did s/he highly suspects babesia.
The L.Ac. who said everyone she knew with this did not improve with abx - well, then SHE probably did not provide the kind of educated support that she could have to have helped that work. Especially if she does not believe this really exists.
I assume you saw an LLMD. Anyone who comments here would need to know if you are are or are not seeing an LLMD and if you can continue.
I am all for natural medicine, and have used much. Some to avoid harsh medicines, but mostly as I had not access to a LLMD. Natural medicines have helped a lot, but not nearly enough. For many, they are very supportive and can help protect the liver, GI, etc.
I have been told my many well meaning NDs or L.Ac. that lyme is no big deal and you just have to get the body stronger. Yeah, I have to get my body stronger, but many just use supportive herbs and not antimicrobial ones, or ones that specifically target the specific infections. that is key whatever path you take.
If ANY doctor does not see the big picture, run . . .run . . run . . . I don't care how nice they are. You need an expert in every part of your treatment. I cannot emphasize this enough.
You have to have effective medicine (whichever type you choose). It has to be strong enough and at the dose recommended for the time prescribed. Support measures are fine, but you have to have the solid antimicrobial base.
It's also important to understand the particular life cycle and course of the particular infections and the effects on the body (liver, adrenals, etc.)
I do hope you are seeing an LLMD and will be able to continue.
Do not even let another kind of doctor get close to you unless they are recommended by your LLMD's office, or that other - complementary to LLMD - doctor really understand the scope of TBD. That's just my advice after trying to work with many over the years, nice, but prefering to stay in their own denial of how serious this is.
EDITED TO ADD: Part of this is my venting. I am burned out.
Of course, if any health professional is interested in learning, share the ILADS site, books by Buhner, Zhang or whomever. It's exhausting learning all this for our own understanding and I think that we should not have to be the teachers, too.
However, as others say, if we don't share, then who will ? If one doctor out of ten actually does go to ILADS' site or read a few articles, that is a good thing. Just be clear on expectations - they won't become an expert overnight in TBD, but they do have lots of other knowledge that we don't, of course. But in my own experience, I have found that even with tons of other info. a doctor may have, TBDs have totally changed just about everything about how my body works. And few doctors then are equiped to function in that foreign landscape.
====
another thought. more protein may be needed for you to process toxins. that's a topic for more energy than I have right now.
an egg has just 6 grams. One serving of fish about 15. We need about 60 -75 grams a day, depending upon weight. Vegetables dont' come close on the protein charts to fish and animal proteins.
be sure you get WILD fish - salmon is best. There is some chart on the amount of mercury in fish somewhere. Wild is better than farm raised for many reasons. Organic food as best you can, otherwise. If you have a Trader Joe's near you, they have great frozen WILD salmon, and wild canned, too. Better prices than elsewhere.
if your kidneys are fine, you might want to see about adding muscle meats cooked to tenderness in soups, etc. People who are dealing with illness also require more protein, if their kidneys are in good shape.
Protein powders might help, but they are not whole foods.
Whey protein powders seem to help many here, though. It helps get the glutathione going. and that helps your body detox better. as you know, lyme is a very toxic deal.
now - all that I said about natural medicine - my experience has been with those uninformed about lyme and TBD.
there are a couple very good books on TBD and natural medinces if you choose to explore those. search: lyme + Buhner or Zhang at www.amazon.com Google them, too.
Trust yourself and follow your very best experts in this. Good luck. Others will come along soon with good support.
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[ 28. November 2007, 05:31 PM: Message edited by: Keebler ]
Posted by kitkat32 (Member # 9682) on :
So sorry your dealing with this.
Are you seeing an LLMD? I would trust his/her opinion more than the acupuncturist. Only because no one is more educated on Lyme than your LLMD.
I was getting acupuncture for several months. The woman I was seeing kept telling me the same thing about abx. I finally asked her...how many patients do you know personally who have lyme and have failed with treatment? Her answer was 3...including me.
I truly believe she was trying to help me but she didn't have the experience with this disease. I told her I really liked her treatments but I am sticking with my abx treatment. Now I just go to her when I have a really bad headache or other aches and pains.
I hope this helps.
Take care, kit
Posted by hillaryb (Member # 10049) on :
Agree with everything else that's been said, and just want to add a few notes about why your acupuncturist is so anti-antibiotics. As I understand it, long-term abx go against the philosophy of acupuncture, because acupuncture is about supporting the body, and antibiotics are all about killing things in the body.
I've been seeing an acupuncturist for years, well before I finally got my Lyme diagnosis. After I got my positive western blot, my acupuncturist was totally supportive of going to an LLMD for 1-2 months of abx. However, she's not thrilled that I'm on long-term abx, and she always gives me hard questions to ask my LLMD, especially since my improvement has been so slow. She continues to work on all of the support issues (adrenals, liver etc.).
Through treating me, she's really read up on Lyme, getting the Townsehend Report on Lyme, and reading about alternative protocols such as Buhner and Cowden. As she has become more Lyme aware, she's suggested that some of her long-term patients who haven't improved get tested for Lyme. It turns out she has several patients with Lyme! She now treats them for what she can (esp. detox stuff) and refers them to LLMDs when their body is ready for abx.
Anyway, the point of this story is that thinking can change, and perhaps if your acupuncturist learns more about Lyme she's see a different picture. I also wonder if how many of her other patients who "failed" on abx had underlying issues that weren't addressed--co-infections, mold, heavy metals all can affect treatment.
To me, the ideal situation is to see a LLMD and a naturopath or holistic doctor so you get both the antibiotics and a supportive and detoxing protocol. You may have to test for things like h-pylori, parasites, heavy metals that all could be contributing to your issues.
You've been sick a long time. Wellness will not come easy, and it will be slow. But stick with it! Good luck!!!
Posted by kam (Member # 3410) on :
RE: your acupuncturist. I think she needs to attend an ILADS conference. Perhaps you could let her know.
Or she could sign up as a member of ILADS and talk with other health professionals.
Then, she could make a better decision.
RE: Being in denial. I still have times when I go through denial but I usually read something or hear something that helps me get back on track.
Posted by marcelle (Member # 13815) on :
Thank you very much for the time you took in replies. Yes, I am seeing a LLMD, although he is new to treating with antibiotics as he previously used alternative treatments. He used to travel to Africa in the Peace Corps to treat Malaria. And he is only 40 minutes away from me - plus I have to pay up front, but he will bill my insurance. I felt fortunate to find him.
Keebler: thank you for your input. I will look into more protein. I haven't eaten meat (except chicken broth in soups, etc) since 1985. Might look into boneless chicken chunks, might be able to down that. Thanks so much for your input about protein. I hadn't thought of the value of protein in the healing process, yet. I love Trader Joes! Will look into wild salmon. Will look into other books too; I don't have those ones yet.
KitKat32: Good point about asking your acupunturist how many patients she knew on abx. Thank you for your input.
hillaryb: That's great about your acupuncturist learning more about the disease. I get my test results back Friday, including about 12 tests, such as parasites, hormones, thyroid, etc. Our next testing will most likely be heavy metals.
Thanks to all. Have a good day.
Posted by marcelle (Member # 13815) on :
Thanks Kam.
Posted by ldfighter (Member # 9405) on :
I had an experience similar to hilaryb. Saw an acupuncturist who didn't seem to approve of long-term abx and was skeptical of the lyme diagnosis at first. But she was very skilled and professional, kept her opinions to herself and focused on helping me, so I stuck with it.
Over time she saw me herxing and getting better with various abx regimens, and eventually came to feel that I was on the right track. When I got babesia treatment and my pulses got much stronger, she said whatever you're doing, keep doing it! She became very pro-LLMD.
Also, I too was resistant when I first got the diagnosis after having the CFS/fibro label for a while. It's perfectly natural. What changed my mind were the undeniable herxes and then response to treatment. I learned that you don't need to believe in abx treatment for it to work.
Lyme bacteria do incredibly complex things to the body and mind, something few healers understand whether they're conventional or holistic. If you have lyme you need to hit it at the root with anti-microbials of some kind. Trust your intuition as you go along. Best wishes!
Posted by bettyg (Member # 6147) on :
hi marcelle,
just in case i didn't send you my overwhelming NEWBIE PACKAGE of info, please send me a PM, private message.
it's the 2 people standing together by envelope icon and ask me to send it to you ok since you LOVE READING! you'll be busy for months since treepatrol's archive of over 1000 links of good lyme info are in there too!!
you mentioned sensitivity to your eyes, be sure to do a FIND for NOIR SUNGLASSES in my info! that's NO INFRA RED sunglasses plus they keep out 2 other things as well. all the info is in my detailed info there.
I WOULDN'T BE WITHOUT THEM. on really sunny days, even with my darkest shade of tinted RX lenses, and my wraparound noir sunglasses, the sun is to hard on my yet!
when i read your symptoms, i couldn't believe how many identical ones we have!
are you getting SSDI, ss disability insurance benefits? the last 25 pages of my lengthy newbie package has details galore on how to WIN, 1ST STEP, 1ST TIME!!
yes, i was in denial when i received this diagnosis! i hadn't really heard of it before, but i felt it beat an early alzheimer's diagnosis! little did i know then how LONG OF A CONTINUOUS BATTLE this is going to be after 38 years now! Posted by marcelle (Member # 13815) on :
ldfighter - Thank you. The words "It's perfectly natural" helped me a lot. And, yes, I need to trust my intuition. Keep fighting. Thanks.
bettyg - Yes, you sent me newbie packet on my first post. Thank you. I read a lot of it, plus I did searches on lymenet too.
Great tip about sunglasses. I am going on a big family trip to Maui next week (our first big trip ever) and I need to get a pair of glasses this week, especially because I am on Zith. Can I purchase them in a regular store?
I have been on STRS (teacher's disability) for several years - that was a battle I faced 7 years ago when I was disabled by Fibro. Glad that war is over. Teachers don't pay into state disability. I hope you are starting to get better - sorry to hear you too have a full menu of symptoms.
- Marcelle
*Anyone have tips on traveling? It's not great timing, but we've been planning this trip since February. Diet tips? etc. Maybe I'll post a support question on that.
Posted by marcelle (Member # 13815) on :
Copied from duplicate post:
Marcelle,
Just for another perspective: it was my acupuncturist who first suggested Lyme Disease to me after treating me for about a month.
When I initially asked her about the doses of abx I was taking, she said: these are brutal bacterial diseases. If you were in China, chances are they'd suggest antibiotics to you, in combination with their herbs.
And now, I'm not only seeing the light at the end of the tunnel, I'm walking in it.
Initially, I was glad when I found out exactly what was wrong with me...and then I started reading about Lyme. Yikes! -------------------------------------------------------------------------------- Posts: 2102 | From: Pa | Registered: May 2005 | IP: Logged
marcelle Flash Member Member # 13815
posted 27 November, 2007 09:30 PM -------------------------------------------------------------------------------- Thank you for your post. Hearing that helps. I am glad you are walking in the light. Marcelle -------------------------------------------------------------------------------- Posts: 27 | From: Lincoln, CA | Registered: Nov 2007 | IP: Logged
Lymetoo Frequent Contributor Member # 743
posted 28 November, 2007 12:57 AM -------------------------------------------------------------------------------- Marcelle...Read my story below. Sounds like yours!
I do remember the denial for months on end. But as I began to improve and I kept reading about Lyme, I knew I was on the right track.
I am also gluten intolerant. Sucks, huh!?
-------------------- Do not take this as medical advice. I am not a doctor, but I DID stay at a Holiday Inn Express!
posted 28 November, 2007 11:42 AM -------------------------------------------------------------------------------- ---------------------------------------------------- Posts: 27 | From: Lincoln, CA | Registered: Nov 2007 | IP: Logged
marcelle Flash Member Member # 13815
posted 28 November, 2007 11:43 AM -------------------------------------------------------------------------------- Hi Lymetoo, I remember reading your story when I first was looking around lymenet and noticed how our stories are alike. I hate to think I will be in this much pain for two years; I am so sorry you had to go through that.
I taught for 10 years.
I am glad to know you are doing better now.
Thanks for the note back. (noticed I have two of the same thread going - wasn't sure what to do about that)
Talk to you again soon, Marcelle -------------------------------------------------------------------------------- Posts: 27 | From: Lincoln, CA | Registered: Nov 2007 | IP: Logged
Lymetoo Frequent Contributor Member # 743
posted 28 November, 2007 11:50 AM -------------------------------------------------------------------------------- Not that it's important to eliminate the other thread...but this is how you edit:
Click on the "pencil/pad" icon next to the date of the thread you want to edit or delete.
When it opens, you'll see in the upper left-hand corner a box with "delete" next to it. Click on the box and then "submit" or whatever it says at the bottom.
That's it!!
If you want to edit out a word or something, click on the pencil/pad and then go into the text of what you wrote and use your cursor to edit.
-------------------- Do not take this as medical advice. I am not a doctor, but I DID stay at a Holiday Inn Express!
--------------------------------------------------------------------------------
Posted by map1131 (Member # 2022) on :
marcelle, what lyme? Why in the world would you think lyme? I'm just kidding. You do have a typical list of symptoms from people who have been thru this ordeal.
Think of teaching this acupunctists a few things about lyme & company so she will start to recognize symptoms in other patients. The real true story on this illness is not widely known. Of course be careful how you educate because sometimes they put on ear plugs if you try to tell them something unfamiliar.
I did acupuncture about 6 yrs ago for about 4 mths. The guy I used left and went to China for further studying. I'd love to find someone like him again.
Something I taught my young acupuncture was...when you go into a forest for a nature walk and are driving home and you look down and see deer ticks crawling all over you.....you get off at the nearest exit with a hotel & swimming pool. You then jump in and use your hands to wash away all the ticks and get out and do a complete tick check at home. You then call your MD dad and get script for doxy to take immediately, just in case.
True story. The only thing is now I think of the poor people that went swimming in that pool and maybe pick up a bad tick.
Pam
Posted by TheCrimeOfLyme (Member # 4019) on :
It does take alot of courage to battle lyme disease, first and foremost, believing you have something that is not readily seen on an MRI, MRA, etc.
I've been there, I've done that. I've gone through the "It CAN'T" be lyme, to "it can't be lyme anymore", to "Yeah yeah ok its lyme, great".
And, I have been told by some very astute doctors that of COURSE it is not lyme disease.
But its the doctors out there, the ones that take the times to listen to your SYMPTOMS and not demand that they get a positive ANYTHING in their face out of our bodies that i really have to put the most faith in.
I've had so much medical testing done, I should be radioactive by now, if I'm not. In fact, I should glow in the dark.
My timeline: 2002- I have something very serious that is going to kill me if I don't find out what it is.
2003- I have lyme. Ok , thats very serious and it could kill me, thank god for medication.
2003 - few months later - REALLY? I'm STILL sick on these antibiotics? Give me a break!
2004- I have lyme or lyme has me. Seems to be holding on... but not so much as before. I have my brain back. Thank god.
2005- Smart azzed me. Lyme is all gone. Bye lyme. Even though I still have symptoms. Oh well.
2006- that stiff neck, headache, fatigue, jaw pain, sleep apnea- all OTHER things. Medical fishing ensues.
2007- Still doing medical fishing. Had MRI's, MRA's, IAC, CT scans, blood work, yada yada yada. Still sick, must still be lyme.
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thank you for your input. I will look into more protein. I haven't eaten meat (except chicken broth in soups, etc) since 1985. Might look into boneless chicken chunks, might be able to down that. Thanks so much for your input about protein. I hadn't thought of the value of protein in the healing process, yet. I love Trader Joes! ![[Razz]](tongue.gif)
Will look into wild salmon. Will look into other books too; I don't have those ones yet. ![[group hug]](graemlins/grouphug.gif)
Thanks to all. Have a good day.
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