posted
So I spoke to my llmd last night and she decided I did not need treatment for lyme. She said to stop the doxy and deal with the RA symptoms and the anxiety issues. I did the igenex immuglobin test recently and it revealed igm positive on bands 31 and 41. She said " I was exposed to lyme, not sure if its active or not". Can someone please please tell me what this means? She said " it is only an antibody test". What is she telling me, do I have lyme disease or not?
My cd57 was 74 well within the normal range she said.
I am sick, I feel sick, and now I do not know what I have. Either I have it or not?
Thanks for any replies.
Posts: 468 | From boston, ma | Registered: Feb 2018
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posted
I also had a recent mri of my brain and it revealed white spots., many more than last year. It said "small vessel disease". Does anyone know what this means. My llmd said it could be from high blood pressure, diabetes, etc. So confused.
Posts: 468 | From boston, ma | Registered: Feb 2018
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You ask: "Can someone please please tell me what this means?"
This means you need to find a real LLMD for a real assessment of your health and one who - if warranted - has flexibility and control in the way they approach treatment plans.
This doctor to whom you refer to in so many posts over the past few months - this is not, not, not a LLMD. You keep relying on her advice and several of us here keep pointing out the various red flags that signal she is not at all a true LLMD.
She may have been in the past when she helped your daughter get better - years ago. But nothing - absolutely nothing you have posted in many months indicate that she still is. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- White spots that show on brain MRI can absolutely be due to lyme disease. Often, when treated - properly with a proper & true ILADS educated LLMD - these white spots may diminish.
RA is often misdiagnosed or caused by lyme, one of lyme's coinfections or other chronic stealth infections (of which a real LLMD would be aware and know how to proceed with specific approaches).
Addressing lyme (& whatever other infections might be on board) can often diminish symptoms, ramifications of the condition at least to some degree, often to a good degree, indeed.
Any treatment for RA in a person who has lyme should be coordinated with an ILADS educated LLMD or LL ND.
I'm sorry that for whatever reasons you feel you are stuck with this doctor. Until you get unstuck, you will not be getting proper advice.
If there is no other way, there is still some other way. You have to find true expertise - somehow, somewhere, some way. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Have you connected with all the local ILADS "minded" lyme support groups within a reasonable radius to you?
Be sure to connect so that your treatment options (and support methods) might be brought to light. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
lindadanis
Please listen to your body AND to Keebler.
Your 31 band is Lyme specific AND your symptoms are Lyme specific. This should tell you that you need Lyme treatment.
Anxiety is horrible. With treatment, it will be greatly diminished or disappear. A ILADS LLMD would start you on a protocol immediiately. I so want you to start feeling better 💚
Posts: 2977 | From Florida | Registered: Nov 2016
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posted
This particular doctor recently went to the ILADS meeting saw pictures of her there so I cannot figure out why she is not treating me. She said " you can take the doxy if you want but its up to you". I guess I will look for someone else because she also told me to start taking care of the RA which meant methatrate, sorry I misspelled that, it is that chemo med used for treating RA. thanks for the input.
Posts: 468 | From boston, ma | Registered: Feb 2018
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l. terrible anxiety 2. light sensitivity and dry eyes blurred vision 3. terrible Charlie horses in calves everynight 4. brain fog blamed on Ativan use 5. confusion/ra symptoms, high RA titers 6. sweating, cold/hot all day long 7. breathing issues/almost panicky 8. muscles hurt
Posts: 468 | From boston, ma | Registered: Feb 2018
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posted
12. biggest symptom of all: off balance, feel like I'm drunk but never drink, tipping over, not dizziness.
how do I find another lyme doctor in my area please. I cannot drive far which is a huge problem for me and no family help.
Posts: 468 | From boston, ma | Registered: Feb 2018
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You say: "This particular doctor recently went to the ILADS meeting saw pictures of her there." (end quote)
That was then. This is now. Even if she attended an ILADS event "recently" she is most certainly not following the guidelines for YOU.
She may not be able to due to pressure from her boss, insurance, the complexity of your case, or she may not agree with ILADS or whatever.
The fact remains that you are not receiving proper care & consideration. Not by a long shot.
I remain firm in my thought about that.
Yet, not to make less of the fact that you require a different and "real" LLMD or LL ND to guide you,
also consider that you may still be weaning off of a particularly difficult Rx that can also intensify / magnify / royally screw up many lyme, coinfections' symptoms.
Also any other drugs or OTC items you may be taking -- be sure to read from various sources about the side-effects and consider that potential mixed bag that could be making this all so much worse.
There is hope. But if you keep going to this same doctor and expect different results, it's just not going to work in your favor. It's just not. You need a better doctor. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
thank you very much Keebler, I totally agree with you. I was fine until last year, woke up sick and has never been the same since. She was treating me with doxy 200 mg. daily and mepron for babesia, but my babesia testing recently indicated it was within normal range. I will start looking elsewhere. She was at this years ILads meeting but you are right, that doesn't mean anything. I know Keebler I am sick and I know I need to start treatment. Should I continue with the doxy since I still have some on hand until I find someone else new. I am not starting any new meds for the RA as I am already on plaquinal and will remain on that for now. Thank you again so much.
Posts: 468 | From boston, ma | Registered: Feb 2018
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Reading is very hard when posts are all scrunched tight. Please put in some space breaks for future posts.
No one can advise you on specific medication or doses. doxy 200 mg. daily is not what's advised by ILADS, never has been.
That dose, though, is not up to the guidelines though it may help in some ways (yet can create the environment for lyme spirochettes to go into hiding / the cystic form.
You also have to consider how your body handles any Rx . . . & have the proper liver / kidney support in place. Proper food, rest.
It may be that if you just do some basics with your treatment and focus on taking excellent care with delicious nutrition and brush up sleep, etc. that your body might help you out better.
I also don't know how the plaquinal affects all this. It does have some anti-microbial action I just am not up on what. See what kinds of infections it covers.
Ultimately, you have to make the decision about what you take and dose with the best expert advice in person / articles / books / lectures that you can find together with how you feel with said Rx.
Seems strange to stop treating babesia until you feel all better from all those symptoms for good while. No treatment - no treatment change - for any tick-borne infection can be based solely on any one test. They are not that reliable.
There is no "normal range" for babesia. If it shows on a test, you have it. Treat it.
But you can still have it with a negative test. It may also fluctuate.
A little bit of babesia is not acceptable. But language here and descriptions can be murky. Study up on this.
Even if mepron might bring relief to stop, I would hope that you would be continuing some kind of action.
Do you have Dr. H's book?
Also see ILADS for the treatment guidelines - as a basic template, though, each person's treatment will vary.
If you are still weaning off an Rx that causes you rough symptoms, be sure you have the proper support around that.
Take care - and I hope you can pace yourself for the upcoming Thanksgiving. Pacing your activity level is key. And be sure to add in some enjoyment always. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
what is that and why would I have it? No never been tested or treated for it, not sure what it is?
Posts: 468 | From boston, ma | Registered: Feb 2018
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posted
Anyone who has EVER had antibiotics for ANYTHING is likely to have it, not to mention that Lyme itself suppresses the immune system, leaving the person wide open to a compromised gut.
Antibiotics kill off the GOOD bacteria .. then you are left with candida. Read above.
It will make you feel dizzy and "drunk."
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
Lymetoo. I have not been on that much antibiotics, I was on doxy for about two months total and mepron for about two months, that's it. Could such a short term on these med still cause this?
Posts: 468 | From boston, ma | Registered: Feb 2018
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