LymeNet Home LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Tick Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Menu

LymeNet on Facebook

LymeNet on Twitter




The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

LymeNet Flash Discussion
Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet 2020 fund drive


The Lyme Disease Network is a non-profit organization funded by individual donations.

LymeNet Flash Post New Topic  New Poll  Post A Reply
my profile | directory login | register | search | faq | forum home

  next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » Medical Questions » Am I The Only One Not Recieving Any Treatment?

 - UBBFriend: Email this page to someone!    
Author Topic: Am I The Only One Not Recieving Any Treatment?
phyl6648
Frequent Contributor (1K+ posts)
Member # 28522

Icon 1 posted      Profile for phyl6648     Send New Private Message       Edit/Delete Post   Reply With Quote 
As of now the ABX I have tried I have had bad reactions. My doctor has me back on vitamins /supplements.. plus an anxiety med. That is the only treatment I am getting.

He feels abx are of no help for chronic lyme. I have tried to find a lyme friendly doctor close by, given up on finding a LLMD that I can afford or travel to.

Feel so lost I don't know what to do, pretend I don't have this disease and wait till it gets me..I am thinking on trying herbs on my own. Forget doctors till I can find one that will take me seriously.. I really thought I had a good doctor. He also lowered my anxiety meds in amount and dosage.. Highly discouraged.

tks,
phyl

Posts: 1058 | From VA | Registered: Oct 2010  |  IP: Logged | Report this post to a Moderator
one4islands
LymeNet Contributor
Member # 28187

Icon 1 posted      Profile for one4islands     Send New Private Message       Edit/Delete Post   Reply With Quote 
Sending you a PM.
Posts: 412 | From Virginia | Registered: Sep 2010  |  IP: Logged | Report this post to a Moderator
smckibben
Member
Member # 27878

Icon 1 posted      Profile for smckibben     Send New Private Message       Edit/Delete Post   Reply With Quote 
Phyl, I thought having a reaction to abx (herxing) was supposed to be a good thing. When the abx start killing the lyme bacteria, the toxin levels in your body will cause the symptoms to become worse. These symptoms will go away as you get better.

It will be a year in March since I first had Lyme symptoms. I am just now on IV antibiotics at home with a PICC line. I'll be on this treatment for 6-8 wks, maybe more. Sure hope it works. Good luck to you.

Posts: 18 | From Indiana | Registered: Aug 2010  |  IP: Logged | Report this post to a Moderator
Hambone
Frequent Contributor (1K+ posts)
Member # 29535

Icon 1 posted      Profile for Hambone     Send New Private Message       Edit/Delete Post   Reply With Quote 
quote:
Originally posted by phyl6648:
He also lowered my anxiety meds in amount and dosage.. Highly discouraged.

This alone is going to make you feel even worse if you've been taking them a long time and are physically dependent.

You could possibly be in what is called tolerance withdrawal from benzos. Your brain needs more than what it is getting and you are in a constant state of withdrawal even though you are still taking the drug.

That will make you feel like death warmed over all by itself with increased anxiety.

You may have a double whammy going on with Lyme and benzo tolerance. This happened to me. Nothing short of hell on earth.

Google benzo tolerance or withdrawal and see the similarities with Lyme symptoms.

I am so sorry you are hurting [Frown]

Posts: 1142 | From South | Registered: Dec 2010  |  IP: Logged | Report this post to a Moderator
TF
Frequent Contributor (5K+ posts)
Member # 14183

Icon 1 posted      Profile for TF     Send New Private Message       Edit/Delete Post   Reply With Quote 
I'm in Maryland which is not that far from you. Please let me know where you are in Virginia.

There are some doctors that may not be far from you and won't cost you that much. One takes insurance.

Posts: 9931 | From Maryland | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
phyl6648
Frequent Contributor (1K+ posts)
Member # 28522

Icon 1 posted      Profile for phyl6648     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thanks, the ABX is not a herx reaciton but an allergic reaction.. which I had before knowing I had lyme.

Hambone, I have enough xanax saved that I had not used so for now I have enough to take my regular doses that I have been taking for 8 years but will have to discuss this with him. No, other doctor here will give xanax, can you believe that. They push the antidepressants but no anti-anxiety.. If it wasn't for xanax I would be in the mental ward..

TF, I am in SW VA near the NC line..I have lymephobia or agoraphobia as I am so afraid to travel and go to strange places.. Going to a doctor here I get all anxious that is why they think its all in my head, well it is, its bugs...

I so appreciate each of you as I have no other support. My family will never get it.
Well, if I didn't have the darn disease, neither would I..

Hugs,
phyl

Posts: 1058 | From VA | Registered: Oct 2010  |  IP: Logged | Report this post to a Moderator
Hambone
Frequent Contributor (1K+ posts)
Member # 29535

Icon 1 posted      Profile for Hambone     Send New Private Message       Edit/Delete Post   Reply With Quote 
Have you seen this video? She healed from 18 years of Lyme naturally. She couldn't handle antibiotics.

http://www.naturalnews.tv/v.asp?v=48B2719E75E7528DB40F903188663F9C


I think you have two things going on. Lyme and benzo tolerance. Benzos can cause agoraphobia, too. The anxiety that benzo tolerance brings is beyond brutal. You might want to see about using a longer acting benzo besides xanax while you are dealing with the Lyme. Xanax has such a short half life compared to some others, and in between doses you can technically be in withdrawal, which is just miserable.

Posts: 1142 | From South | Registered: Dec 2010  |  IP: Logged | Report this post to a Moderator
TerryK
Frequent Contributor (5K+ posts)
Member # 8552

Icon 1 posted      Profile for TerryK     Send New Private Message       Edit/Delete Post   Reply With Quote 
phyl wrote:
the ABX is not a herx reaciton but an allergic reaction..

It would be very unusual to be allergic to all the abx that can be used to treat lyme. There are quite a few to choose from.

For years I thought I was allergic to just about every abx there was. Keflex was the only one I could take. Turns out it is one of the few that has no effect on the bacteria that causes lyme.

You can have a blood test to see if you are allergic. You may need to add binders to your protocol in order to tolerate killing borrelia.

edited to add:
You may want to consider that your reaction to abx may be partially caused by porphyria. Xanax is used to help porphyria. Do a search here in the archives for more information on porphyria.

Terry
I'm not a doctor

Posts: 6282 | From Oregon | Registered: Jan 2006  |  IP: Logged | Report this post to a Moderator
momlyme
Frequent Contributor (1K+ posts)
Member # 27775

Icon 1 posted      Profile for momlyme     Send New Private Message       Edit/Delete Post   Reply With Quote 
Hambone - great video! I like it!

I'm going to check out her blog. And I gave her my vote! [Smile]

--------------------
May health be with you!

Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began.

Posts: 2007 | From NY/VT Border | Registered: Aug 2010  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-
Hambone,

yes, that is a wonderful video. I added that link and her blog to the "ND Thread" linked below.

It would be great if you posted that in its own thread, too, so she gets more votes.

I can sure tell she is better - partly because of her hair style and ability to concentrate and be very articulate with the long cascade of hair near her face. I have not been able to tolerate my hair for years and long for the day when I can tolerate the sensory stimulation of longer hair.

I look forward to seeing her blog at

www.spirochicks.com
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-
phyl,

this has been posted several times for you and you may have copied it to your research file - but since all but one of the herbal protocols that ALIX mentioned are in this thread - here's that link again.

And I will search out the additional protocol or line that I've not heard of yet. (I think she said Health & Direction). If anyone has that detail, please add to the "ND Thread" below. Thanks.

=====================================

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/2/13964?

Topic: How to find an ILADS-educated lyme literate (LL) professionals in these areas:

Naturopathic doctor (ND); Acupuncturist (L. Ac.), a doctor of Oriental Medicine (O.M.D.), or a doctor of Ayurvedic Medicine (D.Ay.), certified herbalists or nutritionists, . . .

Includes many professional links, articles and books on complementary / integrative methods - & RIFE links -- all by LL authors.

Also included are basic links explaining the principles of herbal medicine.

BODY WORK considerations (geared to lyme patients) are discussed; with links.
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-
TerryK mentioned Porphyria. Those with porphyria often have severe reactions to medications.

Xanax (alprazolam) is listed as an unsafe drug for porphyria (see: www.psyweb.com/Drughtm/DrughtmAdv/jsp/AdvXanax.jsp ).

Although, with porphyria, often comes a toxicity that causes anxiety that certainly needs to be addressed and that is first done by avoiding Rx that use the Cytochrome P-450 liver detox pathway -- or when they are required - to balance out with specific liver support.

More about all that here:
-----------------------------

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/91842?

PORPHYRIA

Includes links from GiGi, Dr. K, and others about KPU / HPU (mauve factor) . . .

& links from TerryK regarding METHYLATION issues
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
lululymemom
Frequent Contributor (1K+ posts)
Member # 26405

Icon 1 posted      Profile for lululymemom     Send New Private Message       Edit/Delete Post   Reply With Quote 
Great video, Hambone... I feel exactly as she does about natural treatments..

--------------------
IGM 41 IND, 83-93+ IGG 31 IND,34 IND, 41++, 58+, 83-93 IND

31 Epitope test neg.

Bartonella henselae 1:100

Posts: 2027 | From British Columbia | Registered: Jun 2010  |  IP: Logged | Report this post to a Moderator
TerryK
Frequent Contributor (5K+ posts)
Member # 8552

Icon 1 posted      Profile for TerryK     Send New Private Message       Edit/Delete Post   Reply With Quote 
I was not aware of the warnings when I posted this or I would have included them. Thanks for making us aware Keebler.

Benzodiazapine Drugs are shown as antiporphyrinic drugs in a protocol developed by Dr. Stratton of Vanderbilt University.

Here is the info:

http://www.cpnhelp.org/secondaryporphyria

Excerpted from: THERAPY OF CHRONIC CHLAMYDIAL INFECTIONS INCLUDING THEIR ASSOCIATED PORPHYRIA AND VITAMIN B12 DEFICIENCY: SEVENTH VERSION

Charles W. Stratton, MD William M. Mitchell, MD PhD Vanderbilt University School of Medicine Nashville, Tennessee 37232

"Antiporphyrinic Drugs 9. Benzodiazapine Drugs The specific benzodiazapine drugs used depends, in part, on the symptoms. For example, if panic attacks are the problem, xanax (0.5 mg three or four times per day) can be used."

a users comment about porphyria and xanax
http://www.cpnhelp.org/question_about_porphyria_


The American Porphyria database states:
BENZODIAZEPINES Alprazolam Xanax OK?

They define OK? to be:
OK? = probably safe for prolonged use by individuals with an acute porphyria, based on evidence that is either inconsistent or insufficient to be conclusive

This is also included in the entry.

www.drugs-porphyria.org: Probably Not

Porphyrinogenic web.uct.ac.za/depts/porphyria/: Use with Caution

www.uq.edu.au/porphyria/: Unsafe in cell culture Mainly metab by CYP3A4, but does not transactivate pregnane X receptor (USP DI Drug Info. for the Health Care Pro. - 26th Ed; Williams DA. Drug metabolism. In: Foye's Principles of Medicinal Chemistry, ed. Lemke T and Williams DA. Baltimore, Williams & Wilkins, 6th ed., 2007; Curr Drug Metrab 7:375,2006) Patient report: Safe

I'm no expert but it looks like the safety of xanax is inconclusive in those who have porphyria. I would exercise caution.

Terry
I'm not a doctor

Posts: 6282 | From Oregon | Registered: Jan 2006  |  IP: Logged | Report this post to a Moderator
annier1071
LymeNet Contributor
Member # 28977

Icon 1 posted      Profile for annier1071     Send New Private Message       Edit/Delete Post   Reply With Quote 
I am on xanax for ten years for vertigo. My LLMD now wants me to take it four times a day to stop the nerve endings in my head from vibrating due to the inflammation.

Before seeing the LLMD, I had started to wean off of the xanax. It is not difficult but takes a long time. 1/4 less ONLY for two weeks at a time brings no withdrawal. The doctor can help you with stopping the meds but only when you are feeling better!

I had it drilled into me by four doctors already that it makes no sense to stop xanax for the vertigo when it helps. They stated you have an illness that requires the medication now and that it what it is for. I have to admit, I still do not take it four times a day like he said. I had already weaned to two a day and have been fine that way.

I never had agoraphobia either. Always ran aroudn working and driving all over until lyme. That was the sign that somethign was wrong. I was taking my vertigo xanax twice a day but started feeling nervous our of nowhere, train, driving etc. I finally found out it was neuro lyme and it is getting better. I try to get out as often as possible now (snowed in here in NY).

Don't fear your medication is what my LLMD (who is also a psychiatrist) says. It is when you want more and more and highter doses that you start having a problem. I have never needed that and made sure that I stayed on track with it.
Hope this helps you a bit.

--------------------
Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin.

Posts: 788 | From New york..queens | Registered: Nov 2010  |  IP: Logged | Report this post to a Moderator
phyl6648
Frequent Contributor (1K+ posts)
Member # 28522

Icon 1 posted      Profile for phyl6648     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thanks Annier, the xanax was given to me for vertigo also as vertigo was on of my first symptoms. In fact the ENT first prescribed them to me.. My dose is 1/2 mg three times a day and four if needed but he has cut me back to 1/2 mg twice a day . I think I need the three a day . I have never increased my dose and have taken them over 8 years.

Its the only drug that helps my weird head sensations. I have no intentions of stopping .It keeps the vertigo away or helps it not last as long or come as often. I was always active , traveling , working etc. till this darn disease.
I know its the lyme that is causing the anxiety.

Now how or what to do for the lyme?? What treatment are you on for lyme? I have some doxy I may try again, had to stop because of esoph. and stomach problems. I went back to the doc because of the problem and that is when he told me the abx wouldn't help chronic lyme.. Oh, dear...

phyl

Posts: 1058 | From VA | Registered: Oct 2010  |  IP: Logged | Report this post to a Moderator
lymegal23
LymeNet Contributor
Member # 28573

Icon 1 posted      Profile for lymegal23     Send New Private Message       Edit/Delete Post   Reply With Quote 
He told you antibiotics wont help chronic lyme? what. is he an LLMD. thats nuts. thats peoples first type of treatment is usually antibiotics. then if they cant handle it or arent doing well on it they can use different alternatives. but to say that abx wont help chronic lyme as a general statement is ludicrous
Posts: 995 | From somewhere out there | Registered: Oct 2010  |  IP: Logged | Report this post to a Moderator
glm1111
Frequent Contributor (5K+ posts)
Member # 16556

Icon 1 posted      Profile for glm1111     Send New Private Message       Edit/Delete Post   Reply With Quote 
Antiparasitic herbs and the salt/c protocol helped me the most with my chronic Lyme. This is a possibility you might want to consider.

You can do a search on here under parasites and salt/c. Also check out lymestrategies. Good forum for a lot of integrative protocols.

Gael

--------------------
PARASITES/WORMS ARE NOW
RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS*

Posts: 6418 | From philadelphia pa | Registered: Jul 2008  |  IP: Logged | Report this post to a Moderator
lymie_in_md
Frequent Contributor (1K+ posts)
Member # 14197

Icon 1 posted      Profile for lymie_in_md     Send New Private Message       Edit/Delete Post   Reply With Quote 
I couldn't do ABX and it didn't take me 18 years to do it. If I knew what I know now, I could have done it less then a year. Instead it took me two years. I've not only gotten well, I'm better then when I first noticed symptoms. So keep your chin up, hope and optimism is part of getting well.

--------------------
Bob

Posts: 2148 | From Maryland | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
   

Quick Reply
Message:

HTML is not enabled.
UBB Code is enabled.

Instant Graemlins
   


Post New Topic  New Poll  Post A Reply Close Topic   Feature Topic   Move Topic   Delete Topic next oldest topic   next newest topic
 - Printer-friendly view of this topic
Hop To:


Contact Us | LymeNet home page | Privacy Statement

Powered by UBB.classic™ 6.7.3


The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:

The Lyme Disease Network of New Jersey
907 Pebble Creek Court, Pennington, NJ 08534 USA


| Flash Discussion | Support Groups | On-Line Library
Legal Resources | Medical Abstracts | Newsletter | Books
Pictures | Site Search | Links | Help/Questions
About LymeNet | Contact Us

© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to Terms and Conditions.