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mindful67
New Member


Date Joined Oct 2017
Total Posts : 8
   Posted 10/8/2017 11:14 PM (GMT -6)   
Hi,

I've just joined the group. Thank you for this forum... After 1.5 years of suffering with primarily psychiatric symptoms (totally out of my character), emptying my savings to see what seems like 100s of allopathic and alternative healthcare practitioners, and a virtual stopping to my once vital, vibrant, and non-stop lifestyle, 2 LLMD's have just diagnosed me with Lyme/Bartonella. I am in denial--though I know something has been amiss for this entire period.

It began with Interstitial Cystistis out of nowhere, progressed to severe panic, depression and suicidal thoughts (I LOVE LIFE!!!), to cognitive issues (loss of words-and I'm paid to speak for a living as a professor and corporate exec), deterioriting handwriting, memory issues, joint pain and inflammation, lower back pain (could be from yoga smile, and hopelessness.

I did take the Igenix tests. Results as follows: IgM;+ for band 31, I for 39, + for 41, ++ for 58 and + for 66.
IgG: I for 31, ++ for 41. Any insights?

I started, begrudgedly, xithro yesterday--horrible stomach effects--upping to 500 mg tomorrow, to be followed by Rifampin next week. Have only done natural/holsitic remedies for nearly all little ailments prior. Was also put on about 10 supplements and asked to get more bloodword and brain MRI.

I thought I just had mid-life crisis and hormonal imbalance! So, any feedback would be SOOO appreciated. I feel totally overwhelemed and frightened that I have become a "sick" person and won't get my life back.

Healing and light to all,

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 26428
   Posted 10/8/2017 11:40 PM (GMT -6)   
Hi mindful67 - welcome to our community!

Sorry you have Lyme Disease...but am glad you found your way here.

your Igenex IgM confirms the diagnosis. ( + on band 31 and 41 for Igm)

Rarely band 31 can be from something other than lyme -eg EBV
Did the results say IND ? (that is because it is thought that band 31 can cross-react with EBV, so Igenex offers the Epitope test to confirm band 31 is indeed from lyme)

Is your Rifampin dosage 300 mg twice daily...or 600 mg once daily?
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

mindful67
New Member


Date Joined Oct 2017
Total Posts : 8
   Posted 10/9/2017 12:19 AM (GMT -6)   
Thank you so much for the prompt response, Girlie! Excuse the typos. I am a bit bleary eyed. The 31 was + on the igM and I on the igG. So, in your opinion, I have it? 150 mg 2x daily for rifampin to begin next week in addition to the xithro. I told doc about my sensitive stomach. What is EBV, by the way?

I trust that you are feeling well and healing!!! I fully expect healing with the antibiotics if my stomach can hold out. I am also doing supplements and praying that I do not experience worsening of symptoms (Herz?) as I have much work, travel, school, and an imminent residential move. 🙏 But I am so eager to rid my system of the bacteria, assuming there, from the 🐜🐜! How do people function, work, travel, workout and live life while undergoing treatment? (Mostly rhetorical....).

Have a peaceful night. Thank you again.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 26428
   Posted 10/9/2017 12:36 AM (GMT -6)   
Forgot to mention that Interstitial Cystitis is seen quite often as a symptom.

Yes, those test results back up the LLMD's clinical diagnosis.

Eventually will you be upping the Rifampin to 300 mg twice daily? Total of 600 mg is the dose for Bartonella treatment. (But, your LLMD may be starting you off lower and raising after a couple of weeks)

EBV is Epstein Barr Virus -it is the virus that causes mono.

Well, I have reduced my symptom load...but still not well. Have a few stubborn symptoms that are still bad that prevent me from working...and engaging fully in life.
I don't work ... wasn't/isn't possible for me.

To help with lessening the herx symptoms...I suggest you start detoxing a.s.a.p.
Start with drinking lots of water - minimum 8 glasses daily...
Take liver support (eg. Milk Thistle extract)
Take probiotics daily for gut health.

Then you can start adding in a new detox method every few days..until you are doing multiple methods daily.

Some ideas:
- warm epsom salt baths
- dry brushing your skin prior to baths
- squeeze fresh lemon juice into some of your drinking water
- light exercise - even just a short walk...or stretching, yoga
- Take a binder: eg Activated charcoal (This must be taken a couple hours away from antibiotics, food, supplements.)
- Take a supplement for brain detox: Jernigan's Neuro-Anti-tox II - CNS/PNS OR Nutramedix Pinella.

Keep reading....posting...ask any questions you have..that's what we're here for.

This is a great group of people - lots of knowledge and support here.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

mindful67
New Member


Date Joined Oct 2017
Total Posts : 8
   Posted 10/11/2017 9:44 PM (GMT -6)   
Hi,

I sooo need support right now (what's best way to post to whole group)? I haven't yet started the Rifampin. Doc switched me to Minocycline from Xithro today due to stomach issues. I have one doc saying it's Bartonella and prescribing the combo of Minocycline (2x day) and then adding the Rifampin (2x day) next week. The other I saw said it's not Bartonella, but just Lyme, and was adamant that this treatment protocol won't address the Lyme. I'm so confused and upset. Who do you listen to?

I'm also wondering about psychiatric symptoms from either/both--do they go away with antibiotics or necessitate an anti-D as well? I feel like a pill popper and have only prior done all holistic remedies.

New symptom of teeth pain/sensitivity... In my head?

This is so debilitating. I would love to hear about success stories and full healing. Anyone?

Thank you.....

TxBart
Regular Member


Date Joined Jun 2017
Total Posts : 41
   Posted 10/11/2017 10:14 PM (GMT -6)   
Teeth pain/sensitivity is not in your head. I'm primarily a bart sufferer and jaw, teeth and sinus sensitivity/pressure was a daily issue for months; along with vision, central veritgo, head pressure, tinnitus and other neuro symptoms. It's been getting better with treatment.

I have not tried antibiotics, so I can't really help you on that front. But I will say it's highly doubtful you only have Lyme. It's a lonely bacteria that likes to bring at least one bacterial/parasitic/fungal friend along for the party. I've met someone who tested positive (CDC approved test to boot) for bb, bart, babs, ehrlichia, and one of the plasmas. That's some unfortunate luck. All this to say, I'd lean toward the doctor saying you have bart, too.

There are success stories on the forum. Do a search for "Lyme success story" at the top of the page. Hopefully some of those will give you some hope.

mindful67
New Member


Date Joined Oct 2017
Total Posts : 8
   Posted 10/11/2017 10:38 PM (GMT -6)   
I'm so sorry for your suffering, TxBart. I'm also thrilled to hear you are getting better with treatment. What are you using? Herbal treatments? Other?

Thanks kindly for the feedback and advice. I truly needed it.

Have a good night.

TxBart
Regular Member


Date Joined Jun 2017
Total Posts : 41
   Posted 10/12/2017 6:37 AM (GMT -6)   
I'm doing Beyond Balance herbs, the typical vitamins, supplements and diet, IV ozone, UVLRx, NIR sauna, acupuncture, and daily detox. I have tried a couple of EWOT sessions, but I discontinued those in favor of ozone. In the next month or so I'll be trying a low level laser something or other to help repair any tissue damage in my neck and lower back.

The only thing I've tried that in itself has set me back is LDN. Within 10 minutes of taking it my tinnitus increased tenfold and has not returned back to pre-LDN levels (I quit taking it about a week ago). My head pressure has also increased in frequency.

Believe me, I question my treatment choices every time I have a bad day. I so want it to be like the flu, where it's a steady positive healing process, but...It's definitely a roller coaster ride. Luckily, I think I've modified the track to not have anymore loops (must go knock on wood).

mindful67
New Member


Date Joined Oct 2017
Total Posts : 8
   Posted 10/12/2017 4:43 PM (GMT -6)   
I’m not tolerating the antibiotics... Stomach issues. Doc wants to do IV?! Daily. Seems crazy. Says I’m too chronic for herbs. Who has healed with herbs? I’m not definitive for Bartonella but being treated for treating for that and Lyme.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 26428
   Posted 10/12/2017 4:58 PM (GMT -6)   
Stomach issues is one reason that a LLMD will suggest IV's over oral abx.

Many people - with chronic disease do heal using herbals.

What antibiotics have you tried? Some are easier on the stomach than others.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

goshawk
Veteran Member


Date Joined Sep 2016
Total Posts : 1084
   Posted 10/12/2017 5:43 PM (GMT -6)   
Hi MIndful67,
Welcome to our forum, I can tell you that if you keep treating, try to do your best at detoxing and building your immune system up there is a very good chance that you will get better.

I have been treating for just over a year and yes there have been many ups and downs. There have been times were I really struggled with the thoughts of if I would get better or not.

There also were times were I was just plain sad, fearful and feeling alone with these infections.

This forum has helped me through it all, and even if I wasn't posting a question, just reading other posts can be very helpful at times, especially at our darkest moments.

Then there is the best part, we can all help each other here. Maybe we don't always have all the answers but we can offer support and a shoulder to lean on.

I just want you to know that I am about 93% better after a year of treatment. I am still slowly improving and I believe it will just take some more time, but I will get there.

I always remind myself that I had these infections for quite some time without being properly diagnosed so I just have to keep focusing on moving forward and getting to the finish line.

It takes time and many adjustments but we will get there.

Take care and I wish you the best of healing, Jo
Forum moderator

Hoagie
Regular Member


Date Joined Jul 2017
Total Posts : 235
   Posted 10/12/2017 6:10 PM (GMT -6)   
mindful67 said...
I’m not tolerating the antibiotics... Stomach issues. Doc wants to do IV?! Daily. Seems crazy. Says I’m too chronic for herbs. Who has healed with herbs? I’m not definitive for Bartonella but being treated for treating for that and Lyme.
There are plenty who have healed on herbs alone. It would be my preferred route, however, I need some heroic therapy as I have some swelling on the brain that I believe needs abx to knock down before going strictly herbal.

Good luck to you and hope your treatment goes well.

BTW, it's great that you at least know what's going on with you. Think of all the poor souls out there struggling with these symptoms only to be constantly misdiagnosed. I thought I had MS until I read that Lyme mimics MS and I remembered getting bit by a tick last Spring... Things could always be worse
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