HealingWell
Search Close Search
☰

2nd LLMD Appointment confused and depressed leaving the office

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 5/19/2015 6:54 PM (GMT 0)
I was hoping for good news today going into my second LLMD appointment, being told I just have lyme and the current meds and herbs I was taking would be ok and stay on the same plan but it wasnt the case at all.
My Igenex is negative on the paper but he thinks I have lyme due to the fact of one postive band and the fact that 3 bands were inconclusive meaning there was bacteria present but not enough for a positive but enough present for not a full negative whatever that means. here are the results.

41KDA. ++ I dont get why there were two pluses next to this
31KDA. IND
39KDA. IND
83-93 KDA. IND.........He said the IND means there is presence of the bacteria strain but not enough for a positive and not low enough for a negative so im like *** does that mean IF i didnt have lyme wouldnt it not show up at all like why would any of it show up and thats why he says hes convinced I have lyme.
My bartonella was negative but based on my symptoms and how i get random scratch marks hes certain I have that as well. ALSO I tested positive high for Unreaplasma bacteria infection whatever that means and My epstein barr virus levels were also high , which he said is because my body is weak trying to fight the other bacteria.
I am so confused based on all this and upset that I have this other bacteria infection and that i have another EBV relapse.
Now besides the doxy and tinidzole and countless herbs iv been taking he prescribed me RIFAMPIN and FAMCICOVIR as well along with even more herbs. I literally have 16 different things I have to take each day now which scares me

and to top it all off which is really crushing me and making me hopeless is iv been out of work due to my lack of energy and symptoms since I work construction I have no income and all of these bills that keep building up and I feel im going to ruin my credit and life from this , still havent got anything from disability. Im behind on all my bills and they keep coming and IDK what im going to do, Its hard to not want to give up from everything I learned today


OH YEAH AND I ALMOST FORGOT I FOUND OUT I HAVE SOME GENE DEFECT WHICH MAKES IT HARDER FOR YOU BODY TO FIGHT INFECTIONS AND DETOX PROPERLY ...AWESOME

Post Edited (myeezy24) : 5/19/2015 1:13:22 PM (GMT-6)

Posted 5/19/2015 7:38 PM (GMT 0)
I'm so sorry, Myeezy. I so wish this wasn't so common.

Here are links to see what you can get some help with on the meds that you are taking - sorry, they don't cover any of the herbs, but if you can get help with some of the other things, maybe it won't be so hard to afford the herbs:

www.goodrx.com/

-------------------------------------------------------------------------

www.lduc.org/lyme-disease-resources

-------------------------------------------------------------------------

/prescriptionhope.com/

-------------------------------------------------------------------------

/www.rxhope.com/about.aspx

-------------------------------------------------------------------------

www.pparx.org
-------------------------------------------------------------------------

www.needymeds.org

-------------------------------------------------------------------------

www.healingwell.com/community/default.aspx?f=30&m=2958427&p=1

-------------------------------------------------------------------------

www.gooddaysfromcdf.org/for-patients/patient-assistance/

-------------------------------------------------------------------------

lymedisease.org/news/touchedbylyme/lyme-financial-destruction.html

-------------------------------------------------------------------------

lymeunderground.com/survival-tactics-getting-by-on-a-limited-budget/

-------------------------------------------------------------------------

lyme.kaiserpapers.org/financial-assistance.html

-------------------------------------------------------------------------

lymedisease.org/news/touchedbylyme/needy-meds.html

-------------------------------------------------------------------------

www.lduc.org/lyme-disease-resources

-----------------------------------------------------------------------


As for your test results, the more plus signs beside it, the stronger the reaction - so on bad 41 you had a very strong reaction. The most is 3 plus signs and you had two.

And it sounds like you have a really good doc!! What he said about the test results is true!! IND means that there was a reaction and that the person has the infection when it's on Borrelia specific bands - like yours are.

Co-infections like Bartonella are actually quite common. It's actually unusual to only have Lyme disease.

And is it possible that you meant "unreaplasma"? If so, it's a Mycoplasma, which is also fairly common with Lyme infections. It's really good that you know and are addressing all of these infections so that you can heal and get on with your life.

Try to not let this overwhelm you though - remember all things start off with the smallest of steps - even long journeys!

Also, have you ever considered using Care Credit? It's a credit card with low interest rates only for health care costs. In case you are interested: www.carecredit.com/faqs/

Check to see if your state has temporary disability also. You might be able to get on there sooner.
Posted 5/19/2015 8:11 PM (GMT 0)
thanks traveler and yeah i meant to say unreaplasma, i looked online and it says that its transmitted during sex my doctor said it can be from food , water or anything, nothing about being related to lyme , so im really confused there and im trying to stay positive and calm its just been a very overwhelming and stressful day for me
Posted 5/19/2015 8:39 PM (GMT 0)
I think most of us here can relate to having an overwhelming and stressful day!! Hang in there!!

Break everything down into "bite sized" pieces - treatment - detox - supplements. Then start asking us questions!! We will help as much as we can.

And many find out they have gene mutations that make it hard to detox, so you're not alone there either. There are things you can do. Find out what gene mutations you have and let us know and we can point you in the right direction if your doc hasn't yet, or help clear up any questions or confusion over what your doc said.

One step at a time - you'll get there.
Posted 5/19/2015 8:50 PM (GMT 0)
Myeezy- I know it is overwhelming, but part of that is because you have a really good doctor. It took me many visits with my doctor to find out I have all that you have. Each appointment resulted in another test and another step closer to the correct treatment for me. For you, your doc got all of the tests up front. Also, if the gene mutation you have is the MTHFR the treatment is really simple. Just a little cheep pill 2 X per day.

It seems like you are in really good hands. I hope you start to feel better soon!
Posted 5/19/2015 9:48 PM (GMT 0)
about the ind bands. Regulators require that Igenex and other labs use a control in their testing protocol. If your antibody reaction strength is less than the control reaction strength most labs would say it is a negative and leave it at that. It is important to remember that Lyme suppresses the immune system so lots of people who have lyme will have a weak response or no response at all. Igenex uses ind to let you know if there was a reaction even though it technically fails into the negative against the control. This is important because your body wouldn't react unless there was some prior exposure.
Posted 5/19/2015 11:45 PM (GMT 0)
Gregkdc is right. The WB measures antibody response, not bacterial load. An IND indicates poor immune response, a problem caused by the infection(s) itself. Immune suppression can also be caused by the presence of bartonella and babesia infections.
Posted 5/20/2015 12:14 AM (GMT 0)
Dancingbear* on the gene thing i 4got , i should of wrote everything down at my appointment ill have to ask for a copy of my bloodwork tuesday when i go for treatment , but what is that thing you mentioned you can take twice a day if it is that... thanks everyone for the replies im trying to calm myself down..... i wonder if one of these new herbs or meds he gave me is for this gene problem i have, he told me so much stuff i 4got what everything is for im just taking everything basically because he told me 2, i picked up like 7 new things today to take...

Also he wanted to do more thyroid testing today while i was there to make sure it wasnt be affected by whats going on with me
Posted 5/20/2015 12:22 AM (GMT 0)
Why not just list all the meds and supplements you were given when you are up to it and let us help you figure out what is for what? We've helped others before, and everyone is generally very careful to not give wrong information.
Posted 5/20/2015 12:54 AM (GMT 0)
ok traveler heres the stuff he gave me today thats new for me.
Antibiotics : RIFAMPIN 150MG and FAMCICLOVIR 500 mg , there is a 3rd new one i got to get later this week that was more money idk what it is yet.

He also gave me
1. Integrative therapy Lavender oil,
2.Xymogen: OptiMag 125 Blend ...idk what it is contains Malic Acid and Magnesium Malate and Magnesium Lysinate.
3.Pure Encapsulations ADR Formula : contains a ton of herbs too many to type
4.Pure Encapsulations NAC : contains n-acetyl-l-cyseine 600mg and asorbyl palmitate

I am still on all the other herbs and two other antibiotics and probiotics he gave me from my 1st appointment 5 weeks ago.
Posted 5/20/2015 1:03 AM (GMT 0)
The Rifampin is an antibiotic to target the bartonella.
The magnesium can help your muscles - do you have sore muscles, or twitching?
N-Acetyl Cysteine - good for the nerves, also good for the liver.

Can't help you with the rest.
Posted 5/20/2015 1:12 AM (GMT 0)
girlie thanks and yeah i have twitching
Posted 5/20/2015 1:33 AM (GMT 0)
another question i have travler is 41KDA. ++ I dont get why there were two pluses next to this
31KDA. IND
39KDA. IND
83-93 KDA. IND are all these specific just to lyme? or other co infections or could these be cross infections of my EBV virus
Posted 5/20/2015 1:35 AM (GMT 0)
Myeezy my ND mentioned that actually having more plus signs beside the band is a good thing, it means your immune system is battling hard and may just need some help with anti biotics etc. When your immune system is supressed so much that is when you get little response
Posted 5/20/2015 2:21 AM (GMT 0)
31, 39 and 83-93 don't cross react. They are Lyme specific. Band 41 could cross react with other issues. However, it seems to be one of the first bands to show up with Lyme.

Having an IND should be considered positive. It's like being sort of pregnant. Either you are or you are not. It is very likely you have Lyme based on your results. Dr. H says one Lyme specific band is enough.

I'm sorry you had a rough day! Hang in there.
Posted 5/20/2015 2:31 AM (GMT 0)
thanks and lymie girl that literally made me laugh out loud reading your analogy either you are or you arnt haha
Posted 5/20/2015 3:54 AM (GMT 0)
I am loving your doc, myeezy24! Kudos for you finding him and making such huge progress so quickly, like others have mentioned. AND for finding this forum. You will get so much support here.

Btw, the Famciclovir is an antiviral for the high EBV titers.

p
Posted 5/20/2015 2:05 PM (GMT 0)
thanks
Posted 5/20/2015 5:37 PM (GMT 0)
Looks like those questions were answered!! Yay!! So if you have more, please let us know.

And I agree, sounds like you have a wonderful, well educated doc!! Congrats!!
Posted 5/21/2015 2:55 PM (GMT 0)
hi Myeezy,
No herbs can give you the MTHFR gene mutation. One of your parents gave that to you. The mutation stops or hinders your body of processing folic acid into foliate. Foliate has hundreds of operations in your body. One of the main ones is detoxing. What my doctor has me taking is foliate and it has made a difference for me. You may want to ask your doctor what you are taking to treat your mutation.
Posted 5/21/2015 5:19 PM (GMT 0)
hmm i gotta ask exactly what one it is dancinbear becuz when he said gene mutation i freaked out and i dont remember what one it is he just said it means my body has trouble detoxing so i think its the one you mentioned and Im on a prescribed vitamin thats folic acid b6 and b12 so maybe that helps the gene?? is that what your talking about?
Posted 5/21/2015 7:14 PM (GMT 0)
I think that sounds right. It is the main one that they test for. It is pretty common with Lymies. Not a big deal to treat. Try to remember MTHFR (Monday, Thursday Friday) That's how I remember it.
Posted 5/21/2015 9:59 PM (GMT 0)
so taking folic acid so help your body detox since you said the gene means its harder for your body to use it for detoxing? or do u have to take other supplements to detox to help out this gene defect
Posted 5/22/2015 3:46 AM (GMT 0)
Myeezy24 you sound really similar, almost eerily so, in your symptoms to my own case. Just want to say, I refer to the MTHFR gene mutation as the mother****er gene...that seems to be an appropriate way to remember the name!! I take a rx for it called podiapn (although perhaps there are other better things to do when you have that mutation?)

Hang in there! I too was totally overwhelmed at first. The more you can take time to educate yourself, the more calm you may feel. At the same time, you really are fortunate that your doctor seems to be addressing all relevant points. So you can place your trust in a great doctor and follow his/her recommendations, even when you don't really understand the diagnoses or treatments.

I find these 2 books really helpful: Why can't I get better? By Horowitz and singleton's the Lyme disease solution.

You are not alone in this and you are about to make great progress toward your recovery!!!
Posted 5/22/2015 2:53 PM (GMT 0)
Hi again, So the MTHFR gene makes it hard for your body to turn folic acid into foliate. Taking folic acid (I think) can make it worse or at least not better. It builds up because you body is blocking the path way to turn it into what you need, foliate. You should not take folic acid, you should take foliate. (per your doctor).

Hope that helps.
✚ New Topic ✚ Reply
12