Topic: not feeling too great. which doc should i call?
merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
Ok so i am pretty complicated. Lyme for 4 years this month. 25 weeks pregnant. Lots of medical issues and on lots of meds.
I have been ordered to bedrest 2 weeks ago. Around the same time, i started getting really bad hot flashes, like burning up with a bad fever, sweats then freezing and cold. Then i am getting awful burning feet like a bart symptom. That has progressed to awful neuropathy shooting up my legs.
Its a combination of being tickled, shocked and creepy crawlies. Its awful. It makes me have restless legs. The only other time i got these bad eg pains was when i stopped my pain meds cold turkey when i found out i was preg. The withdrawls were awful.
I did cut my pain meds down a few weeks ago, but these symptoms didnt happen immediately so i dont think its that. I have had chronic fevers for 4 years but my temp has been decent since getting preg. My temp was 99.6 an hour ago which is my usual low fever.
Have become anemic and i started blood thinners around the time this started. my eyes are burning and i just feel pretty bad. Just had thyroid done and babesia m. Through quest, both normal. I am also diabetic on 2 insulins and my sugar has been a bit high the last few days, but my gut says uts not related.
I am on bicillin and zith. No changes to that. I will find out my cbc results tomorrow.
My worry is that MAYBE i got bitten again by a tick. The only reason i think its possible is because my indoor only cat junped up on my bed a few days ago and had a slightly engorged nymph deer tick on his head. Now this cat never goes out so the piece of crap tick must have hitched a ride on another animal or person.
No other ticks were found on anyone. I have no bites or rashes, but never have.
I just dont know which doc i should talk to. My pcp, llmd, perinatologist , .ob or pain doc? my gut says pcp. I think he would be best at looking at the whole big picture. He is excellent and he is also an id doc and he is the one who found my lyme originally.
My problem is that i worry he will want to run another lyme test through quest. While i did come back cdc pos originally at Quest, other quest lyme tests have only been one band pos or completely neg. I am already catching big time grief from all my docs except my llmd about being on abx while preg. If and when my yme test comes back neg, i would expect an even bigger problem, and worry ins will not cover abx.
I also dont think there would be much.that anyone could do for a new bite because i am limited to what i can take during pregnancy. I know no doctor will just treat for babesia without a pos test while i am preg. I have had fancy fish tests in the past and all are neg.
So who would you guys call if it were you? Btw, my peri nd ob dont think i.should be treating for lyme.
Ughhhh. So confused
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Sammi
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Member # 110
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merrygirl, I am sorry you have so much going on and that your symptoms are so severe.
My vote would be to call the Lyme doc, especially since you feel it is possible you may have been bitten again.
Do you have regular herxes? Do you think you are herxing now?
I hope things settle down and that you feel better soon.
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momindeep
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merrygirl, I have been thinking about you. So sorry things are tough. I am with Sammi and say call the LLMD.
Pregnancy is hard on some when they don't have other issues, so I cannot imagine how you feel...I give you a lot of credit.
Let us know what happens and I will be praying for you to get some concrete answers.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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payne
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can you call both ?
-------------------- TULAREMIA/rabbit fever ? Posts: 1931 | From mid-michigan | Registered: Jun 2010
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merrygirl
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Thanks. I dont think i really have the monthly herx. I had a herx when i switched from omnicef to bicillin a few months ago. This doesnt fit into my usual pattern. I am surprised to see so many things happening at once. But i am wondering if the blood thinner is making it so lyme is killed easier?
My blood is normally dark and thick like molasses. But i noticed a change when checking my.blood sugar. It looked.watery, thin and bright red. All my docs blew it off when i told them of the change. But i was so fatigued i couldnt lift my arms to brush my hair. So i thought i was anemic.
Turns out i was , dumb docs dont listen to me! Grrrr. So i added iron to my routine. Should know tomorrow what my cbc is up to tomorrow.
If thats not enough, i have to start progesterone injections tomorrow. Now i am worried the added hormone is going to make my lyme go ballistic. But i have to take the shots because the shot Helps keep you pregnant when your high risk for preterm labor. If i dont take them, my baby could be born early and thats no good.
So as you can see its a big mess. But i could wake up fine tomorrow. Ugh. My gut is telling me part of the puzzle is missing. My gut says it is tbi related, and i wonder about babesia. Confusing . Thanks for your imput.
Posts: 3905 | From USA | Registered: May 2007
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merrygirl
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Hi. Thanks for thinking of me!
I could call everyone of thats what i want to do. I am just so sick of going to appointments. I have 3 alone this week for ob stuff. Its very hard to go anywhere because we had 2 cars and my hubbys died, so now he uses my suv to get to work 6 days a week. So i have to rent a car or borrow a car , or hubby could get a ride from a co worker. Plus i am really supposed to be taking it easy! My main goal is to cook this baby to atbleast 36 weeks, maybe 38.
I dont know. I appreciate everyones input.
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Carol in PA
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posted
The burning feet and the neuropathic pain in your legs may be due to low B12. I am getting some relief from this with Now Foods, Instant Energy B12, which is sublingual.
Blood thinners can increase the effectiveness of antibiotics. If that is happening, some of the symptoms may be due to increased herx.
[ 05-20-2011, 06:00 AM: Message edited by: Carol in PA ]
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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posted
Symptoms sound a lot like babesia to me, but the anemia could simply be from the pregnancy.
You said you tested for babesia microti -- but what about babesia duncani? Hubby had never been tested for that until he had been sick 10 years and was totally shocked when the titer came back at 1:2048 since he never has antibodies to much of anything.
Personally I would get a blood slide done from Clongen. And if at all possible I would get your finger stuck and have the blood taken that way rather than a regular blood draw from the vein. Just have the lab person wear gloves and keep squeezing until they get enough blood. I think the price may have gone up -- may be $195. Just call the lab and ask as it is not listed on their requisition form.
Hubby recently had the FISH test from IGeneX done and it was negative. But his Clongen bloodslide did find some unknown protozoa. Tests were done about a week apart because we had to wait for one of the kits to come in the mail.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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merrygirl
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Hmmm that is interesting bea. I will look into that. I wonder.what the treatment would be if it was an unknown.
Carol thanks for your info too! I was taking b12 inj before getting preg. But i was told not to take them while preg byvllmd. Maybe a quick blood test would be good. But i think i have some sublingual b12 around here.
Posts: 3905 | From USA | Registered: May 2007
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posted
I was thinking it sounded like babesia, too. I found that tonic water helped with babs symptoms when I needed a little extra.
Also, foot pain can be from sluggish lymph flow, which you could have from bedrest. Buhner suggests red root for that. I don't know if you can take it or not. Or maybe just be sure to move around even though you're lying down.
Restless legs can be caused by anemia. There is a product by Hylands for restless legs. I use the one called Restful Legs and it works great. There is another one with a similar name that has quinine in it, which could even be better for you. It's homeopathic.
Not getting your b12 could also be a factor.
It's probably a bunch of different things .... these are just guesses .... I hope you get relief soon!!
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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lululymemom
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I hope you get some relief from your symptoms. You seem to be on several meds. Being pregnant, all those meds do not come without side effects. Maybe you could list what they are...
One reason some LLMD's use heparin therapy is that it helps the abx get deeper into the cells. So YES, you would herx more and harder while on them.
The only thing is that I THOUGHT regular blood thinners like coumadin (for example) did NOT have that effect like heparin did. Heparin works on the fibrinogen. Clearing fibrinogen will enable the abx to get into the cells.
Speak to your LLMD about that .. as well as the dr who prescribed the blood thinner.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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merrygirl
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the blood thinner is lovenox.. the doc that rxd it is a perinatologist. She really doesnt know anything about chronic lyme. We just avoid the subject at this point. Too many other things going on to keep her busy.
I dont really want to post all my meds for the world to see... but this is one of the recent additions
Posts: 3905 | From USA | Registered: May 2007
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merrygirl
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Member # 12041
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Oh and its an injection 2x a day. You are supposed to get serious bruising at the injection sites, but i really havent. Just a couple small ones. I have only been awake an hour and i THINK i feel a bit better than yesterday. But its early.
I start the progesterone today and i am nervous. I pray it keeps me from having a preemie and i pray it doesnt make me sick. The stuff is super expensive, about $900 a dose. Ins denied the brand name stuff, but i did get approved for a compounded version. I guess i should be greatful my copay was only $150 for 4 injections.
I found it odd (although i was not surprised) that my ins co didnt want to approve the injections. Although expensive at $5000 a month, you think that they would rather pay that than $100,000 + for a premature baby. But thats the logical way to think!
Posts: 3905 | From USA | Registered: May 2007
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merrygirl
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Oh, and the ob wouldnt let me just inject myself without going into the office to prove i know what i am doing! It makes me laugh because besides be a critical care vet tech ( i used to put in central lines for crying out loud) i have given myself ivs, bicillin for like 20 months total, mag, b12, lovenox, and insulin. I think i can handle another im injection.
I suppose they have to make sure but i tried to explain that if my husband and i can handle bicilin everything else pales in comparrison! I got the reply " whats bicillin?" and my favorite " wrll this medicine is thick" haha obviously you have never seen bicillin....lol
Sorry now i am rambling. I am pretty lonely these days. Thanks for listening.
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