Avatar universal

Healthy Baby Born and Symptoms are back

Just dropping in. I am happy to announce On August 10th I had a healthy baby girl born at 8lbs 6 oz. It was a fast and easy delivery and well deserved as i had hyperemesis (severe nausea and vomiting the whole 9 months). The trade off was that I had no more migraines and no more joint pain. I had my breastmilk tested and it was negative for Lymes and so was the baby girl. Yay! I decided to BF, but just had an unfortunate diagnosis of a condition called Parsonage Turner Syndrome and I have extreme pain and limited use of my left arm. I now have to take meds and can't breastfeed. I know it is for the better as I have to be able to take care of my children.
Crazy enough my LLMD said he had one other Lymes postpartum patient who came down with the same rare disorder after giving birth. My neurologist thinks the DTAP vaccine I had in the hospital played a role, but it could be Lymes related so I have to go in for many tests to find out.

Will start taking flagyl after I am done with neurontin and corticosteroids. Flagyl seem to keep my symptoms under control the most.
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1763947 tn?1334055319
Congrats on your healthy baby, my births were days long so having it easy is so wonderful.
I have been told many times that any type of stress, having a baby is a stress to your body, can bring up or bring back symptoms. I hope not but let us know how you are doing.
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Avatar universal
Yes, it is a rollercoaster! I am starting to become afraid that my friends think I am a hyperchondriac. My husband can clearly see it for himself so he is very supportive thank God, but I am gettin so frustrated with this. So I get all my tests and daughters tested through Igenenix. They got the Western blot testing. They also do cord blood testing.
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1554647 tn?1316827220
Congratulations on the birth of your baby! I am thrilled to hear that she tested negative to lyme disease.  May I ask what test you had done? I would like to have my children tested.  

I am also sorry to hear about your recent diagnosis.  The rollercoaster seems endless at times.
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Avatar universal
Thanks for your note -- yes, I'm doing quite well -- yippee!

About autoimmune aspects of Lyme, that is something I have read that the infectious disease docs think when they see long-lasting cases of Lyme that don't respond completely to a few weeks of antibiotics -- since the nonLLMDs believe Lyme is easily cured, the only answer must be ... autoimmunity!

And therefore steroids to suppress the immune system from reacting to a disease that is theoretically no longer there seems to be a reasonable response.  Otherwise, the nonLLMDs would have a hard time explaining continued symptoms:  either Lyme isn't cured and so longer treatment is needed, OR Lyme has been cured so it must be the immune system over reacting to an infection that isn't there any longer.  That dodge doesn't make sense to me.  The most logical explanation is:  the disease has not been  cured yet.

I have read others post here and elsewhere that post-pregnancy, as the body starts to wind down from being on super-alert during pregnancy, then ailments that were suppressed by high levels of pregnancy hormones suddenly come back with a vengeance.  And maybe that's where you are right now.  And that vaccination may well be irritating your body, too, as you note.

As the medical abstract above says:  "Parsonage-Turner syndrome, also known as acute brachial neuritis or neuralgic amyotrophy, can be caused by various infectious agents."  Infectious agents ... which would include Lyme.  All the buzzing and twitching nerve symptoms that we Lyme patients get is Lyme irritating the nerves, and the abstract above is written to point out that PT syndrome can be *caused* by Lyme.  And that's not autoimmunity at work.

Best wishes, let us know how you do!!

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Avatar universal
It so nice to hear from you again. I hope you are doing well. That is very good information you sent me. PTS is sounds very rare, but I am not surprised it occurs in Lyme patients. It seems we are plagued with autoimmune problems. The pain is right at the site where I got my injection, but I have a feeling both Lymes and vaccine played a role.  It's was a shock for me as my recovery from childbirth went very well and then this crazy thing happened to me. It's so unfair.
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Avatar universal
PS  I found the following post on another Lyme website just now, and thought it might be of interest:

"I found this older post of mine and thought I'd add my update since I see a few others have seen this post this year and have other Parsonage Turner/Brachial Neuritis experiences. I was diagnosed with lyme, positive Igenex (negative CDC) test and I have been on treatment for 7 months now (three stage antiboitics and also buhners herbs). My arm is still weak but I have full range of motion back and my pain is gone. My lyme symptoms which became very bad are much better but I still have a lot to work on. It seems like each time I switch antibiotics, my arm gets weaker for a while so it's connected for sure."
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Avatar universal
Many many congratulations on the birth of your daughter!  *Thrilled* for you!  8 lbs 6 and an easy delivery -- whew!  

I had never heard of Parsonage Turner Syndrome, so googled it and came up with this abstract from a medical journal in 2009.  The article affirmatively links the Syndrome to Lyme disease, so you are not alone.  

Joint Bone Spine. 2009 Mar;76(2):202-4. Epub 2009 Jan 14.
Parsonage-Turner syndrome revealing Lyme borreliosis.
Wendling D, Sevrin P, Bouchaud-Chabot A, Chabroux A, Toussirot E, Bardin T, Michel F.

Service de Rhumatologie, CHU Jean Minjoz, et EA 3186 Agents Pathogènes et Inflammation Université de Franche-Comté, Boulevard Fleming, 25030 Besançon, France. [email protected]

Parsonage-Turner syndrome, also known as acute brachial neuritis or neuralgic amyotrophy, can be caused by various infectious agents. We report on four patients who experienced Parsonage-Turner syndrome as the first manifestation of Lyme disease. The clinical picture was typical, with acute shoulder pain followed rapidly by weakness and wasting of the shoulder girdle muscles. Electrophysiological testing showed denervation. A single patient reported erythema chronicum migrans after a tick bite. Examination of the cerebrospinal fluid showed lymphocytosis and protein elevation in 3 patients. Serological tests for Lyme disease were positive in the serum in all 4 patients and in the cerebrospinal fluid in 2 patients. Antibiotic therapy ensured a favorable outcome in all 4 cases. Two patients achieved a full recovery within 6 months. Parsonage-Turner syndrome should be added to the list of manifestations of neuroborreliosis. Serological tests for Lyme disease should be performed routinely in patients with Parsonage-Turner syndrome.

    [PubMed - indexed for MEDLINE]
You mention being given steroids for the PT Syndrome.  Is your Lyme doc on board with that?  From what I understand, steroids are contraindicated in someone with Lyme disease, because it suppresses the immune system, which needs to up and running full bore to fight Lyme.

The abstract above says "Antibiotic therapy ensured a favorable outcome in all 4 cases."  It is not clear if that means favorable outcome of Lyme or of PT Syndrome, but since the write up is about PT Syndrome, I would take it to be that ..... but I would check with my Lyme doc before you take steroids at all.  It may be the lesser of evils, but nonLLMDs just don't think about those things.

Again, congratulations!  Keep us posted.
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