phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Well, what now? Went back to the doc last week for 6 months ck.. Got all results back and the only thing that is showing up is the IgM 23 sitll positive.
The doctor told me that abx doesn't seem to be helpful with positive band 23.. What to do?
Oh, my ANA is still elevated, all other test normal..
She just doesn't know what to do but suggested I go to some university facility to see if we can get answers..
So confused..
Posts: 1058 | From VA | Registered: Oct 2010
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
The Western Blot is not a good tool to use to determine if one needs continuing treatment once a diagnosis is made. The bands can easily change over a short period of time. I've never heard anything like what you mention about band 23.
Is your doctor an ILADS member? Do you still have symptoms?
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
All I had was IGM 23 show on my first two tests. Started abx and it since has disappeared and two IgG's have shown their face. I'm not sure which two. I didn't ask. Doc told me that until there is NOTHING showing I'll be treated. That and a cd-57 at 180 or above. I'm at 64 now. Up from 51. I was also informed IGM 23 is Lyme specific. I ditto Texas TuTu.
Posts: 31 | From texas | Registered: Jul 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Is this doctor ILADS-educated?
Sure does not sound like it, especially if wanting to farm your case out to just any "university facility". Most are superbly ignorant of lyme.
You also don't need repeat testing.
For a doctor to give up at just 6-months is probably not at all a real lyme literate doctor. Lyme can take years to treat.
Have you been on combination treatment, along with liver support and antioxidants that can help reduce inflammation? Has your protocol mirrored - in some ways - that of Dr. B? -
Posts: 48021 | From Tree House | Registered: Jul 2007
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phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
I was seeing a LLMD and she and my PA are working together and they are both puzzled as to what to do. According to Igenex my Igm was negative..and one positive Igg 41 .. The standard western blot only 23 igm was positive and igg no positive..
My LLMD has treated me for a year but hasn't had any success tolerating abx except for clindamycin which gives me horrible depression and weakness.. Not sure if this is a herx or side effect.
They feel more is going on other than lyme .. I think I have had ever test there is and tried so many treatments that have failed or let me say the side effects were to bad.
Both doctors feel at this point abx are not helping and I am so confused. Seems we are going in circles. Guess its me but my body will only tolerate small doses ..
That is what I am doing at this time, on my own, taking abx , small dose which is causing horrible depression and weakness..
I can no longer afford the LLMD .. The PA is very honest as she doesn't know how to treat lyme, but feels the Lyme has caused or is related to other illness such as lupus.
I am so sick and tired of the docs I see not knowing and nothing working. Probably had lyme since child hood and not much can be done.. says the LLMD...
I feel I am on my own once again.. tks.
Will a small dose of clindamycin cause horrible depression and weakness to the point I can barley make it to the bathroom.. I have to function so do better without meds than with them..Yes, I have addressed this with both docs and they say we aren't sure as everyone is different..
I honestly don't know where to turn.. Yes have tried many supplements.. Not sure about the Rife machine.. At my age will probably never be well..
Lyme symptoms for 15 yrs or longer.. worse the past 3 .. been in treatment over a yr..
Tks.
[ 11-23-2011, 06:50 AM: Message edited by: phyl6648 ]
Posts: 1058 | From VA | Registered: Oct 2010
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
phyl- I'm sorry you are having such a terrible time of it. Your doctor does not sound like an ILADS educated LLMD and that is what you need.
Detox methods are key for some of us. I was unable to take abx for most of my life and thought I would never be able to tolerate abx. My LLMD knew what to do to help me with the die-off and while it was difficult, I could finally take abx.
I had lyme for decades and was very ill when I started treatment and for the first few years of treatment. Without a doubt, I would not have been able to tolerate abx if my LLMD had not known about all the testing and detox treatment necessary to get me through the first few years.
HLA genetic testing, liver function and methylation testing all helped my doctor figure out what to do to help me. You also need to make sure that you don't have a fungus infection, tick borne co-infections or parasites to deal with.
Have you had testing or clinical evaluation for the many co-infections that go along with lyme? Have you had treatment for any co-infections? It's seems rare that a person only has one infection. Have you had viral testing?
I didn't start to see real progress for several years. Not unusual for someone who has been sick for years.
Don't give up. You just need to get into the hands of someone who knows what they are doing.
Edited to add: Lyme and many of the co-infections require a clinical diagnosis. Testing can be negative despite lyme and co-infections being pressent. If your doctor is basing treatment decisions soley on Western Blot testing then they are not experienced enough to get you well.
Terry I'm not a doctor
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
Just wanted to give you my experience - I was only 23+ on IGM - only symptom was severe joint pain - finally got to an LLMD who believed that I had Lyme; its been 4 weeks on the heavy antibiotics - Doxy; zithro and flagyl and I am about 95% better -- mine definitely reacted to abx's !! But I was treated within 4 months of having rash, so that helps too.
Posts: 22 | From North Carolina | Registered: Oct 2011
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phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Drew, thanks for your input. Yes, I know I need a good doctor but unable to afford one now after depleting my savings on the LLMD I was seeing.
I honestly don't know what to do. My PA said she would study, read and ask and would listen to any advice I had but gee, I need a good doctor..
Yes, I was tested for co-infections etc. Yes, I do have EBV virus , tested for candida, all allergies, other test I don't have a clue what they are but all were ok.
I do not have the joint pain ,more like sinus/ear and balance problems and when I over do I have horrible bone pain.
So what to do?? Learn to live with it, I guess..
Posts: 1058 | From VA | Registered: Oct 2010
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
phy - you can try to learn to live with it but in my case my condition declined until I was unable to do much and was so sick and miserable that it was not worth living. I believe my sister died of lyme after 10 years of being bedridden with "fibromyalgia". This illness is not something that one can learn to live with in my experience.
Not everyone who claims to be an LLMD is an LLMD. In my opinion. your best chance of getting well is to get to a recommended (from other patients) LLMD who is ILADS educated.
We took money out of our retirement so I could get treatment. We borrowed money against our house. I know some don't have that option though and my heart goes out to those who can't get treatment.
If you can't afford an LLMD then you will need to become very well educated about lyme disease. Getting a copy of all your test results and acquainting yourself with the issues that may keep a person with lyme from getting well will be imperative. Stick around here, search the archives, learn from others. Don't give up!!
As far as co-infections - EBV is seen in most lyme patients from what I've been told. I was thinking more about bartonella, babesia, Ehrlichiosis (HGE and HME), parvo b19, Rocky Mountain spotted fever, mycoplasma, Powassan encephalitis, tularemia the Fry bug and there are more...
Drew - There has been much written about these issues and you can find a lot of info by searching the archives.
This thread will get you started - check for some of my posts in order to learn where to look for information about the various issues.
You may also want to look at the KPU issue that many lyme patients need to deal with. Do a google search on KPU and lyme and you will find some articles. This will explain a little about it. http://tinyurl.com/7wk4st8
posted
I sure wouldn't give up. Rife would probably be a good thing for you. You can get a good machine for less than $500. Mine is now 6 yrs old.
or you could try Buhner herbs
Don't give up!! I got well and you can too!
(it took 4 yrs)
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Tks. everyone for your support. I am a mess trying to decide what to do.. I am not giving up but can't do this with out a doctor. Or don't think I can.
Terry, all my co-infections test were neg. thru Igenex.. Bart, babs etc...
No joint pain, do have muscle and bone pain if I over do .. Like I said the ear, sinus and balance problems are what puts me to bed. When I have those my anxiety / depression is so bad..
Going to Dr. search and see if there is one near me, haven't been there lately. I would love to find one that accepts medicare...I know probably impossibe.. My doc here will give me all the abx I need for as long but she isn't sure what to give... Haven't had any luck with abx because I can't take them long enough due to Esoph. issues..plus other things..
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Lymetoo, never tried it.. was tested for yeast was negative.. any natural yeast remedies? May ask my PA and give it a try.. tks.
Posts: 1058 | From VA | Registered: Oct 2010
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Hambone
Frequent Contributor (1K+ posts)
Member # 29535
posted
quote:Originally posted by Lymetoo: Maybe it's yeast in your sinuses and ears?
Or mold. Have you been tested and checked your home for hidden mold?
Feelfit posted a link yesterday that is very interesting. Make sure to scroll down and read it all the way through.
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
My first test showed only band 23, and I saw one of the most famous LLDs. He explained it didn't matter the number of bands, but that they were Lyme specific,and that this was A VERY lyme specific band. He went on to treat me and I did get much better for about five months.
I did crash after, and later tests showed more bands...but never did he ever indicate I would not get better because I had Band 23!!! My oldest son also had just 23 and 41 and he is perfectly well now.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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quote:Originally posted by phyl6648: Lymetoo, never tried it.. was tested for yeast was negative.. any natural yeast remedies? May ask my PA and give it a try.. tks.
- I would never trust the test, really. You can try olive leaf extract or GSE, oregano oil, etc.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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