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» LymeNet Flash » Questions and Discussion » Medical Questions » Trying to decide on a direction for treatmnet and looking for some input...

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Author Topic: Trying to decide on a direction for treatmnet and looking for some input...
Melanie Reber
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Good morning all! It has been a long time since I have posted here. And I am feeling WAY out of the loop on current thoughts and trends on treatment.

The good news is that I have been doing relatively well healthwise for awhile now...

working very long hours, studying and testing for liscensure and just generally trying to live a somwhat 'normal' life again!

The not so great news is that with the year long added stress of doing all that and being completly off meds for about 7 months...

I am now experiencing a few returning symptoms and feel it is time to face the music of a return to medication.

I'm just not too sure what disease I need to medicate for and was hoping for a little insight from you guys.

So, the most prominent players making an encore appearance are:

muscle cramping
headaches
neuropathy
insomnia
drenching sweats
winged scapula
heat and cold intolerance
weight loss
and a general feeling of anxiousness

I know these could be from any one of the diseases I have been diagnosed with, but I am really hoping that this list might point to a specific direction to focus my treatment efforts?

Thanks so much in advance for any insights you may be willing to share!

My best,
Melanie

PS... and even if you don't have any answers- please feel free just to say hi! (I've missed you guys!)

Posts: 7052 | From Colorado | Registered: Mar 2003  |  IP: Logged | Report this post to a Moderator
Summer3
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Those sound a lot like my symptoms. I would focus on Babesia and Bartonella, but I'm not medically trained.

--------------------
http://www.lymepie.blogspot.com

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Pocono Lyme
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Hi Melanie.

My first thought was Babesia but my second thought was hormones? thyroid?
Possibly a combination.
I'm scheduled to see a BHRT doc in a couple of months and was surprised to see many of those on his symptom lists.

I don't know why I would be surprised as every symptom out there could be tickborne related.

Without seeing him, he was nice enough to look over my history and symptom list and labs and believes I need some replacement.

Good luck our lymenet friend.

--------------------
2 Corinthians 12:9-11


9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me.

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jackie51
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You did not mention daytime fatigue so I'm inclined to think this is not babesia. I'm thinking this is bartonella.

I am a proponent of the Byron White Formulas. Maybe you look into those. You will herx on the formula that hits on the infection you have.

Not a doctor, just another lyme survivor.

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Melanie Reber
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Thank you Summer, Pocono and Jackie!

I know that my hormones and thyroid have been way off in the past and I have wondered about 'that time of life' creeping up on me recently. It is just so difficult trying to distinguish what is actually going on or if it is really just a combination of several issues? And if so, what to tackle first?

I was sort of leaning toward Bart too after re-reading a few symptom lists... but normally I see a few stretch marks coming on with a relapse of Bart- not so this time.

However, my CNS is obviously stirred up, so perhaps Bart, perhaps a deep Borellia issue?

No, there isn't any (I've got to lay down RIGHT NOW) fatigue- but I am tired from not sleeping. I just can't turn off the nerves and the mind to stay asleep.

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nonna05
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just tried to PM box is full [hi]
Posts: 2563 | From Denver,CO | Registered: Aug 2011  |  IP: Logged | Report this post to a Moderator
Melanie Reber
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Oh yeah, sorry, I don't do the PM thing but you are welcome to email!

[email protected]

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glm1111
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Melanie,

Many here have discovered that what was keeping them chronically ill was the co-infection of parasites/worms.

Some are feeling much better taking Ivermectin and others like myself have treated with antiparasitic herbs such as Parastroy, Humaworm, Hanna Kroeger Wormwood, extra cloves etc. Treatment must be consistent. Google parasite symptoms.


I also use salt/c which is VERY effective against parasites, Lyme and cysts. Check out lymestrategies for the group doing salt/c.

I found that going after the parasites also was effective against the other co-infections. Do a search on here for parasites as well.

Good luck,

Gael

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

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nonna05
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M.R. Thanks,, also checked link...........
Just a thought, but you haven't been nature walking lately, have you?

I'd be anxious with players showing back up.

Sounds like your plate has been more than full ,also....
I pray it's an easy fix...nonna

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Melanie Reber
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Thanks Gael!

Nonna, well... I am a landscape designer, so my business is 'nature walking', but I have been extremely careful just where I choose to walk these days! I really do not think that I have been reinfected, but rather am experiencing a relapse. These symptoms are too familiar unfortunately. Thank you for the support and I will get back to your emails as soon as I can.

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Melanie Reber
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After doing a little more research- and trying to remember way back on my various symptoms and their associated diseases... I think I need to go after Bart again.

Are there any new thoughts on the most efective protocols these days?

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sixgoofykids
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The protocols seem to be basically the same, however, Byron White has some herbals that are new since you were here before. I think it's called a-bart for bartonella.

Otherwise it's Levaquin or Rifampin that seem to be being used still.

--------------------
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seibertneurolyme
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For bart actually the newest combo is factive and rifampin and some docs pulse in tindamax.

6 - 9 months on high dose rifampin (900 mg) plus factive daily finally got hubby a clean blood slide for bart and his seizure like spells went away for a couple of years. But he is most likely having a bart relaspse along with everything else right now. And of course he can't take rifampin with malarone and many of the other meds he is on right now. But he did add back the factive and it is helping a little.

Bea Seibert

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Marnie
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Hi Melanie...long time no see! Glad you got to the point where you could return to school!

Lots are still doing Rife, Photon therapy now too (infrared...energy transfer).

And of course, lots of abxs and various supplements.

From another sort of "natural" standpoint, if interested, PM me.

We now know Bb picks up another protein in the tick's saliva that is called p8 (besides SALP15). It inhibits mannose binding lectin which inhibits the lectin portion of the complement pathway.

I highly suspect p8 is AKT8.

So we don't fully cleave Bb's proteins.

We also now know for sure there are remaining proteins that lyme patients continually react to, hence the "autoimmune" part -> ongoing inflammation...brain as well as body.

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seibertneurolyme
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Melanie,

Here is a link to Buhner's most recent treatment protocol for bartonella.

http://buhnerhealinglyme.com/co-infections/most-aggressive-bartonella-treatment/

Hubby likes the sida acuta -- supposedly works on both bart and babs. In very symptomatic patients the dose is 1 teaspoon 3 times per day.

The l-arginine and ECGC can both be helpful as well. But start low and slow with either one. L-arginine used to be miraculous for hubby in improving brain blood flow but lately it just aggravates his swollen inflamed brain. And of course you cannot take that supplement if you have any of the herpes viruses.

The ECGC supposedly will kill babesia at a high dose. But again be careful. I think hubby increased it too fast a few weeks ago and he had major hemolysis which landed him in the ER.

Personally I think the protocol would be a good starting point but have little confidence in it actually erradicating a long standing bart infection.

And adding the herbs and supplements to meds is fine and should make for a more effective treatment in my opinion.

Bea Seibert

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sixgoofykids
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quote:
Originally posted by Marnie:
Photon therapy now too (infrared...energy transfer).

This is the one I used. [Smile]

--------------------
sixgoofykids.blogspot.com

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nonna05
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What is ECGC..

What to do with protein/AKT8 info of Marnie's??

I know she has huge info...I just don't get it
[dizzy]
For Melanie , Would this be one of those setback wait re-hit things Pam and Dr.B talk of??

Like the last few finaly reared their ugly heads and one last send off !!!!!!!!!!?????????????

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AuntyLynn
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I thought "drenching sweats" was babesia.
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seibertneurolyme
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Melanie,

The best testing for bartonella is from Galaxy Lab. Very expensive and must be off antibiotics for accurate test. They try to culture the bacteria and test for strains that none of the other labs test for. Pretty sure they are once again accepting human samples.

Cheaper testing that might show if bart is an issue would be a bloodslide from Clongen or from the F lab. But Clongen is cheaper. CLongen will send a test kit for $50 that includes the postpaid mailer to return the kit. Must call the lab as the test is a write-in and not listed on the lab requisition form found on their website. The Clongen bllod smear test itself is $195

Bea Seibert

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Melanie Reber
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Wow... you all are amazing! THANK YOU so very much for the information and suggestions!

I am trying to remember which Bart stain I was positive for w/out having to dig out all my old medical files... I'm pretty sure it was the 'cat scratch' strain- Bart H?

Which brings up another interesting point- my kitty Bob was also positive for it (bad flea infestation in CA) and underwent extensive treatment too. At that time we both got very ill with Bart and it took a very lengthy and aggresive Rx regimine to bring us back.

However, I remember reading then that kitties can continue to be carriers for a lifetime, so now I wonder... he did just have an awful 'relapse' of sorts himself and was found to be extremely hyperthyroid. Hs's been on meds for that the last few months and is doing MUCH better.

Sooo, did he reinfect me after all or am I just relapsing too independently? We have both been under extreme stress over the last year... hmmm.

Anyway, IV Lev, IV Clinda, IV Zith, doxy, mino, bactrim and flagyl (I'm sure there were others) were what did the trick for me then, but IV isn't an option now. I've not tried any of the herbs formulas.

Bea... do you know the cost of Galaxy? I wonder if it would be worth the $$$ to get an accurate picture BEFORE I restart Abx? I have been off everything since the end of Jan when I finished up 4 months of IM Bicillin.

"Nothing makes me JUMP more" -I so completely agree Manybites! I just didn't remember that until now! [Wink]

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nonna05
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Melanie.. did you get e-mail?
My computer isn't letting me know.
Thanks

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Marnie
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Melanie, a complete regualar work-up is in order, IMO.

Chest x-ray, complete CBC including fasting glucose levels and liver panel, mammogram, pap smear, B12 levels, folic acid level, as well as vitamin D levels and homocysteine levels. ALL of those for starters.

If you can talk your doc into it...thyroid scan and esp. liver ultrasound.

Google: liver bartonella

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Melanie Reber
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Hey Miss Marnie. So nice to 'see' you again! It looks like you are stil researching and adding a lot of valuable information here!

I did just have a pap and mammogram recently. Both results came back abnormal, so I was retested 4 months later- both came back fine the second time.

The fasting blood work at the time was only the standard CBC which is a pretty common approach for low level health insurance. Nothing was unusual on that testing.

Again, with a regular PCP, I doubt I would be able to talk them into any further testing that they did not feel was necessary- however, to be fair, I haven't tried because I thought everything was peachy keen!

I have noticed recently that my sub-cutaneous mystery nodules (Dercum's disease) are inflamed and painful again and my muscular-skeletal system is misbehaving- (recent long lasting Plantar F episode, bottoms of feet hurt for no apparent reason, deep aches in the hip and back with the return of a scapular protrusion (inflamed nerve).

Also, I know the endocrine system is upset- no feeling of hunger, wide awake at 2am, flushing, sub normal temps (96.7), fluctuating BP (high the first visit and then so low they could not get a reading), etc.

Come to think of it, the nervous system and respiratory system sort of suck too!

I'll take a look at the bart liver info...

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Melanie Reber
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Hmmm... I'm not really getting anywhere with the search terms 'liver bartonella' could you be a little more specific as to what I am looking for?
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Melanie Reber
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Up for Miss Marnie?

Bea, where is Galaxy located please?

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