sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Thank you Tracy, I greatly appreciate your prayers. I will have my first IV Iron treatment tomorrow. I'm kinda excited, hoping it really helps and is worth the effort.
It's difficult for me to get showered, dressed, and ready to leave the house. Right now I just go out for doctor appts. It all causes too much pain with the back fractures and the effort makes me feel sicker. I should get my MRI results this week.
Bea, thank you for sharing about your husband's experience. I'm so sorry to hear that he is in the hospital again. I hope that things will turn around for him soon too.
I have a gut feeling that my anemia is truly connected to Babesia or an unknown parasite. If you step back and look at the situation through my LLMD's eyes, you can see why he can't immediately chalk it up to Babesia. I do test positive for Babesia. I've had "aggressive" long term treatment and I'm currently on Malarone, Septra DS, and Cryptolepis.
My doc wouldn't be a good doc if he didn't rule out other causes of the anemia since it has gotten so severe. I understand that. Hopefully I have simple iron deficiency anemia. Maybe caused by Babesia. Maybe complicated by malabsorbtion/inadequate nutrition since I've been struggling with the GI symptom (gastroparesis/vomiting) too.
Posts: 5237 | From here | Registered: Nov 2007
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I'm really behind on what's been going on. I'll have to read back and catch up. I'm so terribly sorry you are going through so much!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Pug, I don't think that I'm having an allergic reaction to my medications because my eosinophils were elevated long before I started taking any medications or supplements. They have not gone away when stopping and changing medicines either.
Unfortunately I will probably have to stay on antibiotics for the rest of my life. This is due to my immune deficiency. My immunologist says that this is common for patients like me. We need antibiotics to treat active infections (like Lyme and Co's for me) and to prevent new infections.
Switching and stopping antibiotics is scary experience. If the new med or protocol is not effective I can get sick very quickly with fevers and relapse symptoms. These symptoms are so serious that I've been sent to the ER for possible sepsis. I don't like that.
I agree with Poppy, Pug you are incredibly blessed to have been able to stop the antibiotics and your immune system has kept the infections in check. I guess that emphasizes how individual we are and why no one treatment is right for everyone.
Jwall, and JJ29 thank you for the encouragement and prayers. I'm so glad to hear that the Iron has helped you.
Nonna, your LLMD can order the tests to check for low iron. When my red blood cells, hemoglobin, and hematocrit were coming back seriously low my LLMD ran the extra tests. I don't have my labs sitting in front of me right now to tell you the names. They were low normal and I was started on oral iron.
Manybites, thank you also for sharing your experience with me. I'm sorry that you have been through so much. I agree with your advice, supplements alone can only work as Band-Aids for symptoms. I need to treat the infections to really get rid of the symptoms. I've been working with my doctor to do this. It's a constant challenge as one infection seems to quiet down another roars to the forefront.
Thank you everyone so much for all your encouragement, advice, and prayers. You really do help me get through every day. I couldn't get through all this alone.
Posts: 5237 | From here | Registered: Nov 2007
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
sammy, I am so glad that you have had two good dr experiences lately, after all the horrible ones. I pray that the iron shots will help.
You know, they say the Fry bug, I forget the exact name (protozoa myx___??) can cause the same symptoms as babs. But different treatments are used, such as long-term Ivermectin, and I forget what else. That is one thought.
The other thought is another kind of parasite that you could have gotten abroad---or even from a tick. When you are ready to pursue it, I would ask John F. to talk to Dr. ___ (I'm having a lyme moment, and can't remember his name!).
I am thinking of you all the time, and have been meaning to call. xoxo
Posts: 3771 | From around | Registered: Mar 2008
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posted
My immune system has not kept things in check. My immune system has gone haywire, and my autoimmune tests are sky high. But I am better than I was on antibiotics. That does not mean, by any means, that I am well.
I can no longer take most medications anyway. For bone issues similar to yours, I just tried Forteo at a top specialist office, had a horrible reaction, went to another MD for desensitization, which did not work.
I have family members with severe health problems as well, who also were harmed by antibiotics, and have immune deficiencies on testing.
I only wanted to say that what I thought was a relapse of Lyme etc. when I first went off antibiotics, turned out to be a sort of withdrawal. It can be worth a try to go off and wait a couple of weeks to see what happens.
We were also told to say on antibiotics for life. But as time went on, we found that many of our longest lasting problems have been caused by meds.
Posts: 108 | From US | Registered: Apr 2012
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posted
Will pray really hard!
Posts: 84 | From New Jersey | Registered: Aug 2010
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Autoimmune markers are common in chronic infectious disease. Those who are fortunate enough to have succeeded in treatment, to the point of not needing meds generally have these autoimmune signs disappear.
I think that harm from meds for chronic lyme is debatable, and could easily be mistaken as a cause of subsequent problems. It would certainly be hard to untangle from ongoing infection issues. But everyone has the right to decide for themselves how much medicine they want to take. However, across the board statements that will confuse other patients should be avoided, because it may influence them, and their situation may be quite different.
Posts: 2888 | From USA | Registered: Mar 2004
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Here, here! I agree with poppy. I would love not to have to take these meds, however . . I was so sick without them, and they were the only thing that helped after years of doing natural tx only---rife, herbs, ozone, etc., etc. Eventually, I hope to not need them. JUst wanted to second what poppy said.
Posts: 3771 | From around | Registered: Mar 2008
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posted
My comments were about my own experience and no more "across the board" than other comments on this forum. If people are confused by differences of opinion, that is probably a good thing: better decisions are made by hearing a diversity of opinion.
There are some who feel that Lyme cannot really be addressed by antibiotics, at least for those with a genetic susceptibility to "intractable" Lyme based on autoimmunity.
I take Plaquenil to keep my immune system calmer. I avoid certain foods to keep inflammation down. I do Tai Chi. At some point antibiotics were not helping but were harming. I was a victim of the orthodoxy on this site and want to share my experience with others as much as those who benefited from treatment might.
p.s. black floaters are extremely common, especially after a certain age, and reflect problems with attachment of the vitreous gel in the back of the eye; gradually the brain becomes accustomed to them and you no longer see them
Posts: 108 | From US | Registered: Apr 2012
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posted
sammy, Have you or your doctor considered there may be a connection between your GI issues and your anemia? I don't want to seem to be attempting to diagnose you on the internet, I just see some compelling correlations, and wonder if they've been investigated.
For instance, cobalamine deficiency can occur in patients with chronic atrophic gastritis, nutritional deficiency, diverticuli of the small intestine, Crohn's disease, and/or GI surgery.
Intrinsic factor, a protein normally secreted by the parietal cells of the gastric mucosa, is required for cobalamine absorption.
If either IF or cobalamine is not present in sufficient amounts, a type of megaloblastic anemia develops. The exact type depends on the underlying cause.
Gi manifestations of cobalamine deficiency include sore tongue, anorexia, nausea, vomiting, and abdominal pain. You see what I mean about correlations between anemia and GI problems?
With cobalamine deficiency-related anemia, neuromuscular manifestations are also usually present, and can include weakness, parathesias of the feet and hands, reduced vibratory and position senses, ataxia, muscle weakness, and impaired thought processes.
It is important to know if both IF and cobalamine are present in adequate amounts, because without IF, dietary cobalamine cannot be absorbed by the body.
I could write pages more about other possible types of anemia, their causes, and how to diagnose them, but as I said, my purpose is not to attempt to diagnose you. I just want to make sure the doctors who should be diagnosing you are looking in all the right places, since your case seems unusually complex.
Besides the hemoglobin and hematocrit numbers in your CBC, doctors need to look at the RDW or MCV to determine average size of RBCs, and the MCHC to determine hemoglobin concentration.
Serum cobalamine and folate levels should also be measured. If there is reason to suspect lack of IF production, there is a diagnostic procedure called the Schilling test that can be done.
Hope you find some helpful answers and start to feel better soon! I'm continuing to pray for you.
Posts: 962 | From Charleston | Registered: Jan 2002
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