My youngest was recently diagnosed with this. Her haptoglobin level is low. This can be caused by minocycline and omnicef which she's been on previously. It can be also hereditary or autoimmune, which is highly unlikely based on labwork. It can also be caused by tick-borne illness (yeah, the fun never ends).
She has been off abx for awhile and the haptoglobin test was repeated. It is worse. So I am thinking this low level is due too the damn tbds. We have a followup appt with the hematologist next week.
At the first appt he said that it wasn't "bad enough" to warrant treatment. I asked what the treatment would be if it became "bad enough". He said "steroids". I looked at him and said that just ain't gonna happen.
I've since read that babesia can cause this. She was treated for this 2 years ago and we thought it was resolved.
Has anyone had experience with this? Thanks in advance.
Posted by kitty9309 (Member # 19945) on :
How bad is the anemia? Hemoglobin? Hematocrit? Ferritin?
Posted by jwall (Member # 22999) on :
My haptoglobin results were very low as well. My lyme Dr. said it is from babesia. Do not use steroids. Doc said it will resolve with treatment. Hope she feels better soon.
Posted by GiGi (Member # 259) on :
Look into DNA dysregulations caused by wheat, etc. www.allergie-immun.de (click on English) It is at the base of many problems that are easily corrected if you choose not to ignore it.
Good luck and take care.
Posted by Keebler (Member # 12673) on :
- In addition to the Allergie-Immun link to the main site itself that GiGi just posted above, here's a link to the ongoing discussion thread here at LymeNet:
Int J Parasitol. 2008 Sep;38(11):1219-37. Epub 2008 Mar 20.
BABESIOSIS: RECENT INSIGHTS INTO AN ANCIENT DISEASE.
Hunfeld KP, Hildebrandt A, Gray JS.
Institute of Medical Microbiology & Infection Control, Hospital of the Johann Wolfgang Goethe-University Frankfurt am Main, Department of Serology and Molecular Diagnostics,
Ever since the discovery of parasitic inclusions in erythrocytes of cattle in Romania by Victor Babes at the end of the 19th century, newly recognised babesial pathogens continue to emerge around the world and the substantial public health impact of babesiosis on livestock and man is ongoing.
Babesia are transmitted by ixodid ticks and infection of the host causes a host-mediated pathology and erythrocyte lysis, resulting in anemia, hyperbilirubinuria, hemoglobinuria . . . .
========================
Not much detail regarding anemia, but shows that babesia can be chronic, and that's not been common knowledge until recently:
HOW TO FIND A LYME LITERATE NATUROPATHIC DOCTOR (N.D.)
Includes how to find an ILADS-educated LL ND, an Acupuncturist, a doctor of Oriental Medicine (O.M.D.), or a doctor of Ayurvedic Medicine (D.Ay.), certified herbalists or nutritionists, etc. -
[ 09-18-2010, 03:14 PM: Message edited by: Keebler ]
Posted by 17hens (Member # 23747) on :
My friend's son has been treated for lyme for over a year without improvement.
About 4 months ago he woke up with bart rashes across his back. Now he's being treated for Bart.
He also has severe anemia, which is why I'm thinking he has babs too.
I'll see if I can contact my friend and get more information for you.
Posted by Keebler (Member # 12673) on :
Anemia and Celiac Disease - by Nancy Lapid - September 10, 2009
Excerpt:
ANEMIA OF CHRONIC DISEASE
While iron-deficiency anemia is a well-known consequence of celiac disease, researchers at Columbia University first reported in 2006 that patients with newly diagnosed celiac disease have an "unexpectedly high prevalence of anemia not due solely to iron deficiency."
Specifically, roughly 12% of their anemic patients had a form known as "anemia of chronic disease."
This type, sometimes referred to as ``anemia of chronic inflammation,'' is typically seen in patients with long-standing infectious, inflammatory, or malignant diseases. In these conditions, the immune system's response to the inflammation can interfere with the body's production of red blood cells.
INTENSE INFLAMMATORY RESPONSE -
Because people with celiac disease who eat gluten have an intense inflammatory response in their intestines, it's not surprising that anemia of chronic disease could develop. A later study from Italy showed that patients with untreated celiac disease can have both forms at the same time: iron-deficiency anemia, and anemia of chronic disease.
In light of the intense inflammatory response, caused by all these tick borne infections - with or without celiac - antioxidants such as Turmeric may be very helpful to lessen inflammation.
I found Stinging Nettle to be very helpful in correcting anemia for me years ago. My ND suggested that and it really worked.
Stinging Nettle, in addition to being full of key nutrients, also helps to lower the Cytokine reaction, thereby reducing inflammation.
. . . Stinging nettle leaf is bitter in taste and cooling in action. It cleanses the blood. Nettle seed nourishes and removes toxins from the kidneys. . . .
* Nettle leaf extracts reduce inflammation, in part, by suppressing the release of inflammatory cytokines. They do this by blocking a chemical inducer known as NF-KappaB, which alters gene expresion. This may be one explanation for the beneficial efffects this herb has exhibited in rheumatoid arthritis (Riehemann et al., 1999).
* One set of in vitro experiments on live blood using extracts of stinging nettle leaf exhibited its ability to slow down the inflammatory cytokine response caused by endotoxins.
In the same experiments, when there was no endotoxin present, the nettle leaf actually stimulated an immune response. Researchers believed these results could explain the positive effects of this extract in the treatment of rheumatic diseases (Obertreis B et al., 1996).
- Full chapter at link above.
From ``The One Earth Herbal Sourcebook'' (Tillotson, et.al.)
And this has me reminded about what Marnie has posted regarding anti-inflammatory action of
OmegaBrite - easily found through Google. -
Posted by seekhelp (Member # 15067) on :
Keebler, any chance AI Therapy could be your miracle? Ever consider it at some point.
Posted by AlanaSuzanne (Member # 25882) on :
Wow, thank you so much for all the replies.
Her hemoglobin, hematocrit, ferritin levels are normal. But her WBCs have ranged from low to low-normal for over a year and there seems to be no relation to the wbc level and abx.
And not to worry, I am determined that steroids will not be part of her treatment.
In doing some research, I saw that bartonella can cause this as well. She tests negative for this, but has been clinically diagnosed based on severe abdominal pain and mesenteric adenitis. Bactrim will likely be the next step (rifampin caused the herx from hell). Then again babesia can cause hemolytic anemia so I wonder if that has been eradicated from her system and needs to be retreated.
She has never had a rash of any kind.
I've read about porphyria and honestly don't completely understand it but because of the hemolytic anemia and the abdominal pain, it should be explored further. She also has had severe ear infections and ear surgeries beginning in toddlerhood, which is a little unusual.
We had her tested for celiac and it was negative. We tried to go gluten free anyway for a few days and saw no difference. But I know you should really try this for a month at least. So maybe that's another thing to revisit.
And the allergie-immune...well I don't really understand that either. I read a bunch of posts on the thread. But it does seem like something worth trying.
Thank you all so much for your replies. This is a lot to digest.
And Keebler, when are you going to become a LLMD???
Posted by mjbucuk (Member # 843) on :
My son had hemolytic anemia this past summer. I wondered what caused his... but he did have a titer for the virus B19 which also can cause this type of anemia. The hematologist has my son taking folic acid.
Posted by Keebler (Member # 12673) on :
- Alana,
I'm a bit of an imposter. On my third glass of protein powder today because I can't stand up long enough to make any real food. Not a good idea.
I get caught up with computer and then too exhausted to function. I really need to just unplug this thing but keep thinking it will help me think if I can solve one or two puzzles.
Hey, I can copy and paste but that does not mean I've read it all - or understand it, either. But I do see connections and remember what my porphyria doctor told me.
I also had very severe anemia, and may again as my palms are so very pale - so I needed to review all this again for myself.
Hope you get answers and see some success. -
Posted by AlanaSuzanne (Member # 25882) on :
mj thanks for this info. Never heard of virus b19. Is there a specific test for that? How bad are his labs?
Is your hematolgist a LLMD? Ours is "lyme friendly/semi-knowledgable" His response when he saw her history was "oh wow she has lyme's" so my impression was that he had seen it in his practice.
Did the folic acid reverse or improve your son's anemia?
Posted by AlanaSuzanne (Member # 25882) on :
Keebler pls edit that post. You are not an imposter whatsoever. You are a wealth of knowledge.
I am sorry you can't stand up long enough to make yourself a meal. But think about it....despite that and despite your exhaustion you still are able to help so many here.
We can all copy and paste, but you do so much more than that. Don't under-estimate what you have done here. No one does what you do.
Thanks so much for all your help on this and other things. I hope you get answers too.
Posted by seibertneurolyme (Member # 6416) on :
Steve never had his haptoglobin levels tested.
His anemia showed up as low RBC, low hemoglobin and low hematocrit. For him the drug Factive raised all of these levels to normal and also raised his low WBC to normal. His other indication of destruction of RBC was elevated bilirubin which went to normal also.
All these markers were out for a year or longer and then have stayed pretty much in normal range for the last year after he took the first round of factive back in 2009.
Bea Seibert
Posted by AlanaSuzanne (Member # 25882) on :
Bea, I have been leary about factive b/c it's a floroquinolone. That said, if I thought it would help I'd consider it.
But my daughter's rbc, hematocrit, hemoglobin, bilirubin levels have thankfully thus far always been normal. Would be curious to know what Steve's (hubby?) haptoglobin level is. I had never even heard of of this til a few weeks ago.
I know you have posted about BLO and I am very interested in that b/c she has tested negative for the other bart tests eventhough she has been clinically dx'ed.
Posted by GiGi (Member # 259) on :
Standard medical tests do not reveal DNA dysregulation caused by food allergies, or for that matter, other allergies. There is a vast difference between energetic testing which is fairly new to most doctors and biochemical testing.
Posted by LightAtTheEnd (Member # 24065) on :
I have recently had symptoms which could be caused by hemolytic anemia, but have not been diagnosed with it, so I'm not positive that is what it is. I know nothing about haptoglobin, so I apologize if my example is unrelated to your daughter's problem.
I have had air hunger, dizziness/feeling faint, muscle exhaustion on exertion, an increase in migraines, and a few other issues. It has been much better the past week than the week before, even though I hadn't made changes to my treatment yet. I don't know why it got worse and then better.
I have simultaneously developed lipomas (benign fatty tumors), which might not be related, though I can't help thinking that it's all connected somehow. That is not listed as a symptom of low B-12, though, and little is known about it.
Hemolytic anemia and serious neurological symptoms can be caused by low B-12 (and iron can be normal). Of course, they can be caused by many other causes, too.
My Lyme doctor tested my blood and said that my B-12 is low because I am not absorbing it properly. He said that is often caused in people with Lyme because they are developing gluten intolerance, and strongly recommended that I get tested for it, and/or switch to a gluten free diet right now.
My local doctor told me that Metformin, which I have been on for many years, has been found in recent studies to cause poor absorption of B-12, so she took me off of it and put me on B-12 supplements, but said the oral ones may not work to increase my level, and I might need shots instead. Either way, I don't think my level will increase until my body starts absorbing it better.
There is still the possibility that my recent symptoms could have something to do with a hidden coinfection, but I don't have any obvious symptoms that can only come from babesia or bartonella, so I want to take care of these other 2 issues first and see how much that helps.
I would skip the steroids, try a gluten free diet, check her B-12 and other nutrients, consider possible coinfections, and look at all the drugs she's on and their possible side effects.
Good luck. If I manage to fix mine, I will let people know what worked.
Posted by pingpong (Member # 13706) on :
FWIW,
Abstract below suggests that cysteine intake may be a contibuting cause?
Title: Hemolytic activity of Borrelia burgdorferi. Authors: Williams LR, Austin FE Source: Infect Immun 1992 Aug;60(8):3224-30 Organization: Department of Microbiology and Immunology School of Medicine University of Louisville Kentucky 40292.
Abstract: Zones of beta-hemolysis occurred around colonies of Borrelia burgdorferi grown on Barbour-Stoenner-Kelly medium containing agarose and horse blood. Blood plates were inoculated with either the infective strain Sh-2-82 or noninfective strain B-31 in an overlay and incubated in a candle jar. Both strains of B. burgdorferi displayed beta-hemolysis after 1 to 2 weeks of incubation. The hemolytic activity diffused out from the borrelial colonies, eventually resulting in lysis of the entire blood plate. Hemolysis was most pronounced with horse blood and was less intense with bovine, sheep, and rabbit blood. Hemolysis was enhanced by hot-cold incubation, which is typical of phospholipase-like activities in other bacteria. Further characterization of the borrelial hemolysin by using a spectrophotometric assay revealed its presence in the supernatant fluids of stationary-phase cultures. Detection of the borrelial hemolytic activity was dependent on activation of the hemolysin by the reducing agent cysteine. This study provides the first evidence of hemolytic activity associated with B. burgdorferi.
Unique ID: 92347995
Posted by bigstan (Member # 11699) on :
Yep that's me. Have had it now since I became ill 4 years ago. Low haptoglobin. Currently my Haptoglobin is 8 normal 43-212 mg/dl.
When the illness first started I had slightly higher then normal Hemoglobin, and Hematocrit.
So the doctors were thinking PV (Polycythemia Vera)but I didn't have the JAK2 mutation gene.
I also had two seperate total blood volme studys using Chromium-51 radionuclide, and also I-125 labled RISA. These are nuclear radioactive isotope's. Blood was withdrawn injected with this material and re-injected back into my body. These isotopes tag the RBC's and they are actualy able to count them.
My RBC's were in normal range so no PV. They had a level of 1 POIK (rbc's size/shape).
I have been to three Hematologists specialists. No answer's from any of them. My Hg and Hematocrit have been back in the normal range for a couple years now. However the haptoglobin is always really low.
Yes it can be also hereditary or autoimmune, but like your daughter the labs don't back it up. A low level of haptoglobin in the bloodstream is a sign of hemolytic anemia. But I have gotten nowhere trying to find out the scource other then tbd's and co-infections.
Here is a link to 90 different causes of low Haptoglobin: Hope it works.
I believe the Hematologist won't be able to help you. Just my opinion but if he/she is able to shed some light I'd like to here about it also.
I also have low Immunglobulins. Maybe have your daughter tested for the Igg Subclasses to see if there low.
The past month I've been treating with Mepron/Zith for Babesiosis and Bart. I didn't have a positive test for either.
I have a 14 week standing order at the labs and one of the tests my doctor is repeating weekly is Haptoglobin to see if it comes up with treatment. I start that this week.
Hope I helped you can PM me anytime.
Posted by AlanaSuzanne (Member # 25882) on :
Light, have your haptoglobin level checked if you think it could be a cause of your symptoms. I never even heard of this til a few weeks back. Your air hunger could be a sign of babesia. The dizziness could be from POTS. And the other symptoms, well who the heck knows? Lipomas, like you said to my knowledge are just benign fatty tissue.
Never heard of metformin. What is that used for?
My daughter's B12 and iron have always been normal. The stuff she's on wouldn't cause this problem.
And yeah, if I get this fixed, I'll let everyone know as well.
Posted by AlanaSuzanne (Member # 25882) on :
Ping, that article suggests (unless I am totally dense which is very possible) that b. burgdorferi can be a cause of hemolytic anemia. I came across other articles that suggested the same thing. Z
From what I've been reading over the past few days, Lyme, Bart and Babesia can all cause hemolytic anemia. Thanks for the article.
Posted by AlanaSuzanne (Member # 25882) on :
Bigstan, I guess it's good that this was discovered when you first became ill, but then again not really because it still hasn't been resolved.
My daughter's haptoglobin about 5 weeks ago was in the high 30s but a couple weeks later dropped several points. She's been sick since 2008 so I have no idea what it was before.
Never heard of PV, JAK2, Chromium-51 radionuclide, or I-125 labled RISA. I learn something new here everyday.
What I do know is that her reticulocyte count is normal which apparently is a good thing. But these other tests you mention are something I will be asking about at the next visit to the hematologist.
I don't believe I'll get too far with the hematologist either. He seems to be just as puzzled as I am. But he is lyme-friendly and respects the LLMD who referred her to him.
After endless hours of research, the only thing I can see as a cause of this low haptoglobin level is TBD. My daughter has been tested upside down and sideways for autoimmune issues and none of the other causes in the link you provided (thanks for that) are relevant to her.
Like you, she does have abnormalities in her IgG subclasses, so I was pursuing the avenue of Primary Immune Deficiency as well, but the abnormalities are not severe or extensive enough to consider treatment with IVIG.
My daughter was treated for babesia at the very beginning with zith/mepron and her symptoms subsided.
She has been using herbals for bart recently but we will now have to ramp that up.
Your post was very helpful. Thank you very much. You can PM me as well.
Posted by AlanaSuzanne (Member # 25882) on :
FYI:
IMPORTANT FOR ANYONE DX'ED WITH HEMOLYTIC ANEMIA:
We were informed by LLMD that taking Bactrim would be disastrous for someone with hemolytic anemia. Bactrim was to be the next step for treating Bartonella.
Posted by daniel (Member # 22201) on :
hey,
i had heamolytic anemia too befor i got really sick.. it kicked me 1-2 times a months.. i was suddenly yellowish/pale (in summer!!!) .. you get the yellow color when too many red blood cells are destroyed at once. now i havent that symptom anymore.
Posted by jwall (Member # 22999) on :
Is septra the same as bactrim?
I am not sure if I have hemolytic anemia, but my haptoglobin was low - 24. LLMD said it points to babesia infection. I am treating babesia now with IV clindamycin, mepron, and arteminisin. I am also on oral septra, flagyl...and IV merrem for lyme. Can't remember if he said septra is for babs too??
Why is bactrim disastrous??
Posted by kitty9309 (Member # 19945) on :
Septra is Bactrim.
Posted by AlanaSuzanne (Member # 25882) on :
Daniel, glad to hear the anemia went away.
Jwall, A side effect of Bactrim is actually hemolytic anemia. Your haptoglobin is really low. I'd call your LLMD.
Posted by jwall (Member # 22999) on :
Thanks, I will let him know. Those were my results before starting treatment, so I don't want septra to make it go even lower.
Posted by LightAtTheEnd (Member # 24065) on :
Metformin helps regulate blood sugar and is used for diabetes, polycystic ovarian syndrome, and any other condition involving insulin resistance. It is also called glucophage and has been around for a long time. I believe it is considered one of the safer drugs for diabetes, or was until these studies about low B-12 came out.
Posted by pingpong (Member # 13706) on :
AlanSuzanne,
Your welcome.
Yes, borrelia is associated with hemolytic anemia,as the authors find.
According to this abstract, cysteine activates hemolysin; hence the latter destroys red blood cells.
Since I have chronic borreliosis,I would therefore infer that, if I took cysteine, I would either cause hemolytic anemia, thereby, or, exacerbate an existing hemolytic anemia; a healthy person may not otherwise develop a hemolytic anemia. Furthermore, for myself, at least, I would extend this precaution to N-acetyl-cysteine(NAC).
Posted by jwall (Member # 22999) on :
Is hemolytic anemia the same thing as having low haptoglobin??
I am taking NAC. Should I not be??
My LLMD did not make a big deal of this...to me at least - just said we treat the infection, it will get better.
I guess I'm going to have to ask more questions about this next month when I see him.
Posted by hadlyme (Member # 6364) on :
Just got my new lab reports today and I'm anemic.
Also, I give myself B12 shots every 3 weeks.
And... my ALT was elevated. (so today tests for hepatitis just to rule things out)
RBC low, Hemoglobin Low, Hematocrit Low... and Monocytes High!!
Always something new with this disease.
I have Babs/Bart...
Posted by AlanaSuzanne (Member # 25882) on :
jwall, my daughter was dx'ed with hemolytic anemia just based on the haptoglobin level. Her hematocrit, hemoglobin, reticulyte (can never spell that one) and Coombs test are all normal.
Bigstan posted a link to all the causes of low haptoglobin. I can't believe the number of meds and disorders that can cause this. I would doublecheck anything -- meds and supplements to see if it affects haptoglobin.
hadlyme, ain't that the truth--always something new with these dds. I would definately explore your labs further with your LLMD. Did the LLMD check your haptoglobin level? BTW, B12 shots every 3 weeks doesn't seem like much but then again I'm not a doc.
ping, I am not familiar with cysteine or hemolysin. So now of course I will have to look into both (learning something new every day I agree that if there is something that can cause hemolytic anemia it's wise to avoid it.
The LLMD said bactrim would be "disastrous" to treat the bartonella given the hemolytic anemia and the hematologist said IVIG would be "disastrous" to treat the lyme (Igenex positive again despite treatment) given the hemolytic anemia. I asked about the IVIG because so many abx can cause this type of anemia and I wanted to explore other options. So for the time being it's herbals and supplements. Trying to find abx that treat lyme and bart but do not cause/contribute to hemolytic anemia is a challenge.
Maybe you can elaborate a little on the NAC for jwall.
Posted by AlanaSuzanne (Member # 25882) on :
Another thing, IMO it would be wise to get a recommendation for a hematologist from your LLMD if you have abnormalities like these. I have found that some docs who are technically not LLMDs realize how serious lyme/cos are. Though this probably depends on the area where you live.
Posted by TX Lyme Mom (Member # 3162) on :
quote:Originally posted by AlanaSuzanne:
We had her tested for celiac and it was negative. We tried to go gluten free anyway for a few days and saw no difference. But I know you should really try this for a month at least. So maybe that's another thing to revisit.
The blood tests for celiac are NOT always accurate, especially for someone who has either IgG sub-class deficiencies or an IgA deficiency, since the celiac tests are based on IgG and IgA. This happened with our daughter who does have true celiac (ie, the genetic type). That's how I'm aware of it.
There is another lab you need to know about which specializes in testing for celiac based on stool testing and also a cheek swab test for the genetic component -- not blood testing.
Lab testing is a much better way to go than simply trying to do a gluten free diet because there is so much "hidden" gluten in our food nowadays and even a minor unsuspected exposure to gluten in someone who is exquisitely sensitive to it can confuse the symptom picture for several days afterwards.
I'm so thankful that we were able to nail down our daughter's true celiac diagnosis in this way or else we would have thought that she was relapsing from Lyme because the symptoms of what I like to call "neuro-celiac" and "neuro-Lyme" are so similar that it can be extremely confusing. The symptoms are not limited to GI symptoms, believe me!!
These symptoms of celiac are the same classic symptoms of neuro-Lyme, but they respond beautifully to a strict -- and I mean 100% strict -- limitation of all hidden sources of gluten in the diet, and that's the big catch. Even a minor trace of "hidden" gluten is enough to throw things off for several days, or even longer.
If it turns out to be celiac, then you'll need to learn to recognize all of the hidden sources of gluten in order to be successful with a gluten free diet. There are scores of celiac websites and forums on the internet which can provide reliable answers to your questions about celiac. In other words, I would not rule out celiac merely on the basis of one negative blood test for it.
Here's something else that you need to appreciate and that is the possibility that Bb can be one of many "triggers" for activating latent celiac. By that I mean in a person who is genetically predisposed to celiac -- and this is 40% of the American population(!) -- then the role of Lyme disease can be a predisposing factor in triggering celiac. So the odds are rather high that your child's hemolytic anemia is indeed related to an underlying celiac condition afterall.
This was the case for our daughter also so I'm speaking from the voice of experience here. The good news is that she is fully recovered now from both late-stage, chronic Lyme disease and also from an undiagnosed celiac condition after having been ill since early childhood, a total of nearly 4 decades.
She has been antibiotic free and symptom free for nearly two full years now, and her long-standing anemia is gone also. Oh Yes, and she was also diagnosed with all three tick-borne coinfections that you are dealing with -- Lyme, Babesia and Bartonella -- and also a similar, long-standing hemolytic anemia diagnosis, too. (They didn't do the fancy new type of "hapto-something" testing that your post mentions, but they had other ways to diagnose hemolytic anemia back then.)
It seems like a miracle to us that after so many long lost years and against so many incredible odds that she has achieved normalcy at long last and that she enjoys a normal, healthy lifestyle now. I'm saying this to inspire you NOT to overlook the possibility that celiac could indeed be a major factor in your child's diagnostic profile and symptom picture and NOT to rely on one possibly "false-negative" blood test for celiac.
Also once again, let me emphasize NOT to rely on a trial of a gluten free diet either!! The low-tech, low-cost dietary approach works just fine for folks who are not exquisitly sensitive to gluten, but a GF dietary trial will mislead you terribly if true (ie, genetic) celiac is indeed your child's problem. Voice of experience speaking here, so please heed this warning and do not dismiss it lightly, I beg you.
It will spare you a lot of time and expense in the long run to take advantage of the specialized lab testing that is available. (The most cost-effective test offered by Enterolab is their $300 panel, which includes both the genetic cheek swab test and also the stool test for gluten, which is the very first test panel in the column on the left side of the page at the link above.)
Send me a PM if you need anymore specific information because it's often easier to discuss things privately one-on-one (or by phone) whenever they are as complicated as your child's situation is than it is to try to do so in an open forum like this.
Posted by Gace24 (Member # 2652) on :
Hi, This is a little out there but there is a disease called PNH, Paroxsymal Nocturnal Hemoglobinuria, it is a genetic mutation involving red blood cells. It is rare, not hereditary.
Your daughter does have some symptoms, low haptoglobin, low WBC and abdominal pain. Just google PNH.
Like I said it is unlikely, but thought maybe you would like to check it out. I am an infusion nurse and have seen this once, so that is how come I know about it. Grace
Posted by Lymetoo (Member # 743) on :
TXLymeMom is SO RIGHT!!! (and congratulations, mom on helping your daughter get well!)
Go to www.celiac.com for a list of forbidden and "OK" ingredients found in canned goods, salad dressings, etc. It is essential that you eliminate ALL sources of gluten.
I once tried the diet for a month and got no relief. Years later I was told what TXLM just told you. I became more knowledgeable and then did the diet again.. SUCCESS in just a few weeks!
It can take as long as two years to get the full benefit of a gluten free diet.
You will be protecting her from thyroid disease, diabetes, and neurolgoical symptoms by finding out the real score here.
Celiac.com also has a great discussion board so you can ask questions.
Posted by GiGi (Member # 259) on :
Wheat/gluten/grain "allergies" = aka as dysregulations of the autonomic nervous system can be corrected permanently, as can many others such as damaging "allergies"to toxic chemicals and heavy metals.
Take care.
Posted by AlanaSuzanne (Member # 25882) on :
txlymemom, you are an inspiration to me and I thank you so very much for this information. I really appreciate hearing from a mom like you who has "been there, done that" for 4 decades!!
Wow, I can't even imagine what you've been through. My family has been through hell. Yours must have gone through hell a few times over.
I am happy to hear that your daughter is finally able to enjoy her life after such a long struggle. I am crying now as I read and respond to your post. It touches my heart when you speak about lost years and incredible odds. And I can surely understand how it seems like a miracle.
I will order the enterolab tests for her. Thank you again from the bottom of my heart.
Posted by AlanaSuzanne (Member # 25882) on :
Grace, Thank you so much for this information. I never heard of PNH. I will check it out...low haptoglobin, low wbc, abdominal pain...her major issues.
Unlikely but not impossible...I like hearing from nurses. They've seen so much. Thank you.
Posted by AlanaSuzanne (Member # 25882) on :
Lymetoo, thanks for posting this. I do need to find out what the story is with gluten.
If gluten is the problem, then yeah, OMG....
Gluten is in practically everything and folks need to get educated. My cousin told me going gluten-free isn't all that difficult so that gives me hope if we have to go down that road.
Posted by AlanaSuzanne (Member # 25882) on :
Gigi, thank you for the link. I am a little overwhelmed by allergie-immune. But I know it's something I need to look into further.
![[Smile]](smile.gif)
I agree that if there is something that can cause hemolytic anemia it's wise to avoid it.