posted
Hello everyone again. I am still waiting to see the doctor I go the 5th however, I am going stir crazy with tons of questions.
I got my results back and I am looking at them and my western blot says lyme antibody screen 2.52
However my IGG and my IGM are all negative non reactive. How can this be.
Do I not have lyme do I have some other freaking diseases. I know I don't have HIV I was already tested for that twice and I have been married to the same man for 7 years. and the one before that 13 years. What the hell! LOL
It not lupus came back negative, check for syphilis nope, RA nope,
I just want to feel better, I am so tried of being tried and hurting all the time, and not remembering things.
The other thing is I don't understand lyme at all How am suppose to explain this to my husband and kids when I don't understand it.
If it is lyme how will I know what treatment is right for me? I am so scared and worried I am going to open up a can of worms when I start treatment and make my self worse.
I only say this with treatment because I don't trust doctors anymore. Not after all of this
WOW I don't even know where I start and where I end anymore. well I hope someone can help me out because I can't stand this not knowing or understand this anymore.
Posts: 52 | From Ohio | Registered: Oct 2013
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Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
Hi Hurting. I know how much you are hurting. We have all been there. If the other things you mention are negative. You most likely have Lyme.
Is your appointment on the 5th with a llmd (Lyme literate md) or just your primary care? I believe a Lyme literate dr would treat your symptoms along with negative other tests. But a GP might put more weight on the WB.
Every one here will tell you to get an LlMD. But in the mean time, if in your heart you think Lyme fits. Consider negotiating with your PC. Tell them, you know the tests are iffy if you have had Lyme for longer than a few weeks, and that you would like to do an abx challenge to see if you Herx and then retest to see if the abx stirred things up so that the standard WB registers. Or order the Igenix Kit and ask your dr. To draw the blood.
My pcp treated me on a hunch and one band. I herxed big time and that was proof enough for her. I then found a Llmd. But a good Pcp can be a great ally. Just do a little homework and ask for a specific abx. Print out Dr. B's treatment guideline to give to them and flag the page with dosages. (Most importantly don't accept 100 mg of doxycycline twice a day, the common dose.. It could make you feel better but actually be causing the buggers to turn into cysts)
I'm sorry, I don't recall your other posts. But if you have been feeling this way for a while, treatment could be long and hard. But knowing this helps. You will likely feel worse before you feel better. I believe that is one of the most important reasons for a llmd... They can help you through what is a good bad, and what is cause to change treatment.
Hang in there. This is a positive but scary time. You may very well know now why you feel so bad. It's not easy. But you will feel better.
Posts: 1728 | From USA | Registered: May 2011
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posted
The Western Blot can come back negative if you had it done through regular labs like Quest or Lab Corp. Their testing is not as sensitive as Igenex. They do not even test for ALL possible bands.
Lyme testing only checks for one or two strains and there are HUNDREDS of strains out there.
If you had a positive ELISA test you can take that to the bank because the ELISA is known for false NEGATIVES.
Hang in there and make sure you have a well-respected LLMD lined up.
and PS... get a test through Igenex. It will cost you about $250.
As for talking to your family about it, BECOME INFORMED! Start here:
posted
Thanks Lymeetoo, I will some how have to come up with the money for Igenex.
What test do I need to get from them, I have read on some sites they ask what test you want.
I know I have lesion on my brain so it is either MS or Lyme, Since my titer came back 2.52 I would say I have lyme
I camp and fish all the time so I am sure this is what it is, I don't want it to be,
but if is I want to know how to take care of myself.
Posts: 52 | From Ohio | Registered: Oct 2013
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Kudzuslipper
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posted
Hurting, most infectious disease doctors adhere to some antiquated guidelines. I believe your appt. may confuse you more. If your pcp is open I would ask to start abx with them. Cancel the infectious disease dr. And find a good llmd.
My pcp believes in azythromycin as a first line abx. Please bring dr.b's guidelines to your dr. 2 years is a long time. But I had it for 2 decades and yet I am feeling much better after treatment.
Llmd's are key, please post in finding to be referred to someone. But pcp's especially open minded integrative pcp's are often more willing to work with you than other specialists like infectious disease drs.
Posts: 1728 | From USA | Registered: May 2011
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Kudzuslipper
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posted
I just wanted to give you the link to Dr. B's guidelines.
It can be a hard reading. But look at the treatment guidelines and print a copy and give it to your dr.
Some here may think it odd that I am wanting you to engage your pcp. I just feel if lyme is ever going to be really battled it is going to pcp's on the front line. And to be clear, I do think you need an llmd. But your pcp knows you better and can be an ally in a very confusing time.
Posts: 1728 | From USA | Registered: May 2011
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
Yeah-bad news going to infec dis doc I think igenex is covered by ins There is a good llmd in no missouri Can u go to our seeking a doc
Good luck-really sounds like lyme
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
Is it possible to herx without taking anything.
I guess what I am trying to say is can these things die off and cause extreme pain before hand.
I had extreme pain in my head and stiff neck for a month with very sore feet
ten felt better for 2 weeks, then I was so tried again for 2 weeks
I get really bad back pain every couple off weeks but then it calms down.
at these times I have to take more medicine.
I eat a lot of garlic and drink lots of water. When I use salt it has always been sea salt.
Dos this have anything to do with it, or are these just normal things I have been going through..
Please don't think I am crazy. Trying to figure all of this out. I hate not knowing my own body anymore
Posts: 52 | From Ohio | Registered: Oct 2013
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posted
I'm not sure what you mean by "these things."
You are bound to have a terrible case of candida/yeast if all you eat is cereal and fruit.
You absolutely cannot continue that diet when you get on antibiotics.
I agree with the others to skip the inf disease dr apptm. Even if this Dr is willing to treat, you will only be treated for a maximum of 4 wks. Then you will be back to square one.
He/she will also not use Igenex and that is what you need.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Catgirl
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posted
I would ditch the ID doc if I were you. They don't have enough training on chronic lyme. They are following an old and out-of-date format for not only treating lyme, but identifying it as well. I saw the top one in our state. What a disappointment that was. You will be wasting your time and money seeing one. Try to find and ILADS doc (LLMD--lyme literate MD). They are cutting edge.
You can go to www.lymediseaseassociation.org and they will email you some names. You can also post here in seeking or go to ILADS.org.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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lpkayak
Honored Contributor (10K+ posts)
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posted
Your sx sound more and more like lyme
Coming and going is common
Garlic could make u herx...but pain also comes with infec
Recently others have complained about above link to lda not giving up to date info
Please go to our seeking a doc forym here for help...i think someone from ky or pa may have an llmd for u
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Catgirl
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posted
quote:Originally posted by hurtinginoio: What dose are you suppose to take (doxycycline) ?? also what foods are we suppose to eat
I hear no sugars no dairy no this or that. I crave sweets. I eat basically only cereal and fruit. No appetite.
I have so many question? I am so Scared.
Don't be scared. I was scared when I finally figured out I had lyme too. It's the acceptance process as well. We have all been there and done that. It's a long slow battle worth fighting, IMO. You can do it!
I forgot to mention this in my post last night. A lyme literate MD, or NP, or DO will usually prescribe 400mg of doxy (200 2x a day). Doxy must be taken with s.boullardi or patients can get C diff (something you don't want).
Start taking probiotics now. They will help. Once you are on abx, you slowly want to work up to a dose that works for you. For me, it was 450 billion per day. You cannot start out that high though.
My lyme literate doc had me on too low a dose 36 billion. IMO, especially women should be on minimum 200 billion per day. You have to start slow though, and now would be an excellent time since you are not yet on abx. The abx destroyed my gut, gave me yeast, and my gut hasn't been the same since.
Also, seriously, an ID doc will tell you it's all in your head (a waste of time). They will run a bunch of tests and dismiss any possibility of chronic lyme. They simply are not trained to treat chronic lyme because a: they are using a faulty test (the correct test to get is IgeneX, and no ID doc will order it), and b: they haven't been trained by ILADS, so they have no clue that clinical symptoms are the proper diagnosis for lyme. ILADs docs know WAY more than any doc who does follow ILADS guidelines.
Many of us drive or fly out of state to find an ILADS doc. It's worth it.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Kudzuslipper
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posted
Catgirl, do you really mean 400 mg of doxy twice a day? Or 400 total?
I agree though hurting with Catgirl. The best thing you can do is rally, research and not be scared. You just need to take the steps, and it will get better. But do your own research too. Forums are just that, forums for ideas and experiences... But everyone is different and every treatment is different.
Posts: 1728 | From USA | Registered: May 2011
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Catgirl
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posted
Sorry, my lyme brain... I just went back and edited it. It's 400 total per day. Thanks for catching it Kudzuslipper! :)
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
Hi, it has been a long weekend celebrated my granddaughter 3 birthday
finally, she turn 3 September 27 and I was just able to give her a party this weekend,
it was the 1st available one. Thank god she to young t realize
Ok, as for being scared, I am scared of the unknown.
I have accepted lyme, but not knowing what is going to happen. Not knowing the right steps to take or who to trust.
The infectious docI see tomorrow I am gong to go. I promise my PCP I would. I did find out he knows about lyme,
SO the question is how much does he know and what is his outlook on I.
I will be honest I don't know what to even ask him. I so confused, lost, scared, I do not trust anyone in the medical field. \ I trust my family doc, but not like I ue to I even question him now.
Ok as for the probiotics, which kind should I take, I don't have any stomach trouble yet,
however I am constipated( TMI)I eat yogurt I think I forget to mention that before in my other form.
If I sound confusing tonight I am sorry I have been feeling really weird and kind of sick for 2 days. my head huts and the fatigue is horrible.
I have this soft spot on the base of my head on the right side
it is causing a serve headache I have gotten this before but it has never become soft in form
It is stressing me out a little. my neck is stiff but not a bad as it was in September thank god.
Are there any question I should ask this doctor tomorrow?? I have to start some where..
Posts: 52 | From Ohio | Registered: Oct 2013
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
I'm sorry you have to deal with the confusing world of Lyme.
It's hard to question the Drs. They are supposed to know what they're talking about, especially Infectious Disease Drs.
I think all of us have mourned the loss of a sense of security when we realize that you cannot trust the Drs and have to be your own advocate. It truly feels like the rug was pulled out from under you at a time when you are too sick and weak to fight.
I know I had given the Infectious Disease Dr chance after chance after chance. I wanted to believe what he was telling me was the truth.
However, I ended up sicker because of their ignorance. I ended up with a more entrenched infection that I am still fighting.
We are all here to support you. Yes, we know how this story ends because it's like the Groundhog's day movie. However, you have to realize that you need an LLMD in your own time.
When you are finally ready for one, just know that Ohio has some really good ones.
P.S. Magnesium Glycinate at night is very helpful for constipation.
Once you are on antibiotics, Florastor is a must. I took Florastor and VSL3. Now I take Florastor and Theralac.
posted
Yes I watch it. I just wonder myself do I have it.
What else could cause my titer on the western blot for lyme test o be so high.
Why such doubt now.
I am so ready to say the heck with everything and just forget.
I am so tried of fighting anymore. I have been the one determine going from doctor to doctor and not giving up pushing for Dx.
Trying to make them listen to me that there was something wrong was a 2 year process.
I just don't have the strength to fight no more. I need a GOOD; NO a wonder companionate doctor now..
Posts: 52 | From Ohio | Registered: Oct 2013
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
You're going to the wrong Drs. LLMD's don't simply check for Lyme. It's never solely Lyme. At my first appt, which lasted 3 HOURS, the Dr took 40 vials of blood to find out what the heck was wrong with me.
That's why they do not accept insurance. If they did, their hands would be tied and they would only order a CBC and maybe a thyroid test and say you're fine.
If you want to find out what's wrong, make an appt with one of the LLMD's near you. You're lucky. Many of us don't have one even in the same state and travel very far and wait months for the 1st appt.
I went to an LLMD as a shot in the dark. I knew I had a positive Ehrlichia test, but that's all I had to go on. Well, I had soooo much wrong with me it all made sense why I felt sooo sick. It wasn't all in my head.
Same thing with my husband. I didn't know what was wrong with him and neither did all the Drs and specialists in surrounding states. I took him to my Lyme Dr just to rule out Lyme. Turns out, he was positive, and after a year of treatment, he is well and back working. He would be dead if we had listened to the regular Drs who had him on steroids assuming it was all "auto-immune".
I know it sucks beyond belief to have to figure this out on your own.
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